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Comments from Request for Information NOT-MH-08-016, Priorities for the IACC Services Subcommittee for Autism Spectrum Disorders (ASD)

Comments have been redacted for Personally Identifiable Information

From: [redacted personally identifying information]
Sent: Tuesday, August 19, 2008 9:51 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00001] NOT-MH-08-016
  1. Research for treatments, particularly occupational therapy (e.g., interventions targeted at motor planning), that are common practice but have little empirical support.
  2. Barriers to early diagnosis. Here are some examples:
    1. Focusing on children without language delay (e.g., Asperger’s Disorder). On the one hand, these children have better prognosis but they are identified later because the absence of a language delay makes it more difficult to diagnose during the critical years of social development.
    2. Mandatory screening for autism among all children referred for services in the public school system. Currently, it is in the schools’ best interest NOT to give a diagnosis of autism as this creates a greater financial burden for the district. Parents incorrectly assume that the school experts who are evaluating and treating their child would give their child the most appropriate diagnosis when in fact there is a disincentive for that to happen. This is why many parents do not get an independent assessment despite receiving a summary of a law stating that it is their right. For example, in our school district, parents are told that children from 3–5 years of age are auto–matically given a diagnosis of “developmental delay” because it is too early to diagnose. Obviously, this impedes a parent’s understanding of the seriousness of a disorder such as autism and may present a barrier for the parent in advocating for services appropriate for ASD within the school system, and attaining services outside the school system.
    3. Assisting families with young ASD children in accepting a diagnosis and understanding the ramifications of receiving early intervention vs. hoping their child will grow out of it.
    4. Educating professionals who have contact with young children (e.g., pediatricians and daycare workers) about the signs forASD.

Thank you for doing this important work!

[redacted personally identifying information]


[redacted personally identifying information]
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From: [redacted personally identifying information]
Sent: Tuesday, August 19, 2008 12:47 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00002] your request for info from about ASD survey

I have a 6 year old daughter with ASD the high priority issue for us is both early intervention and everyone one the spectrum getting services. I live in DE and we have a program and public school for children with Autism. The problem here is if your child isn't accepted into the school then they don't receive services such as ABA, sensory testing and therapies, and ABLLS testing and follow up education that works for them.

I hope this is what you was looking for in your survey. If you have any questions please ask. Thank you!


[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, August 19, 2008 1:17 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00003] NOT-MH-08-016

Thank you for the opportunity to offer input and ideas regarding support of people with ASD.

I am the mother of an 18 year old son with Aspergers, ADHD and Bipolar. As parents, we have been overwhelmed with decisions, heartbreak for our child, determination, devastation and helplessness from the day of diagnosis. And all through this my beautiful son has managed to still have a loving heart and desires to live on his own one day. As I am sure you know......our greatest fear is what will happen to our wonderful son when we are no longer here to take care of him.

Problems started in daycare and by 1st grade he was in full blown depression. Daily incidents at school, emotional upsets, medication trials and aggressively advocating for my child became a way of life. Dr. after Dr. saw him and we tried medication after medication. Expenses were huge. We paid for private schools until they would no longer except him due to behaviorial problems. We then turned to public school and he floundered there for years. He was in and out of a theraputic mental hospital many times when he became uncontrollable. No one knew exactly what was wrong and the side effects of his medications became huge problems. To this day we have to keep a lock on our refrigerator and pantry because some of his meds give him a huge appetite. His education suffered greatly, socially even now he is an outcast.....and our family has been torn and disfunctional for years. He has been the target of hatred and bullying both verbally and physically all his years in public school. I learned enough by his 3rd year in public school to get aggressive, demand his rights to an appropriate education and to seek consequences for those who have chosen to harrass him, hurt him or bully him.

I had to demand modifications and follow up on every thing in school – some teachers helped, some could have cared less about him. They were too busy teaching the “gifted and talented”. I once had a 6 hr ARD where I was told no one knew he was on meds....even with page after page of written documentation in his file. He is in high school now and I thank God for the few caring Special Ed directors and teachers that have my son’s back and will go to any length to see that he is treated fairly and has the support he needs – he is starting his senior year this year. His meds seem to be working for him, for now. He has made progress in school, and is maturing. He is like any other young man......he desires friends, a social life, maybe even a girlfiend in the future. The big question is.......what will the future hold for him ? He can't just sit at home day after day for the rest of his life.

It is our hope he will be able to hold a job in the future. He quite possibly could live on his own with supervison. Taking his meds everyday and safety issues are the biggest concerns we have for him. He deserves a chance to grow emotionally, have friends, and feel accomplished and proud.

There must be affordable self – contained residential communties with loving and caring support available for individuals like my son. Where they can work on social skills, have a job within the community right where they are living, with no transportation issues. A place where he can learn, grow, worship and play. There are plenty of private communties that cost thousands of dollars a year and are financially out of reach for parents like us – and rest assured, there are hundreds of thousands of us out here. Good solid communities built with the disabled individuals needs at the center of concern are needed desperately.

What little Social Security benefits, HCS or CLASS they get should be applicable for their residential needs. They should have their choice on where they want to live and work and should not be told they can't live in a certain community.

We have a wonderful community an hour away called New Danville that is being built with all these supports in place for our wonderful son. We were thrilled. We put him on the waiting list......you must be 22. Now we just found out that the Texas Dept of Aging and Disablilities has made a ruling that these individuals cannot use their SS benefits to pay for their residential needs in this communiy. In other words, only the rich can afford this kind of wonderful community being built.

Please NIMH........fix this monumental problem. Individuals like our son deserve a choice of where they want to live and have a good life within a protected and loving environment. And parents like us deserve the piece of mind we so desperately have sought all these years for our son.

Many blessings to you

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, August 19, 2008 4:39 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00004] NOT-MH-08-016

Hello: this email is in response to the Request for Information (RFI): Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD)

The New Hampshire Commission on Autism Spectrum Disorders published its findings and recommendations in May 2008. The Commission identified six key areas needing attention, including:

Infrastructure: The State of NH will provide leadership to ensure that at all levels–local, regional and state–services for individuals with ASD are provided in the most timely, collaborative, and effective manner possible.This includes developing and supporting a service infrastructure that is multi – disciplinary, person – centered, and easily accessed by children and adults with ASD and their families.

Early Identification and Timely Access to Diagnosis and Treatment: All NH children will be screened for ASD before age two. All children suspected of having ASD will be referred immediately for early supports and services and undergo a diagnostic evaluation within 45 days. All children with a diagnosis of ASD will have begun a robust program of evidence–based intervention and treatment within 45 days of diagnosis.

Successful Transition to Adulthood: All NH students and young adults with ASD will be given the opportunities and supports needed to make a successful transition to adulthood and to be engaged and contributing members of their community.

Safety: All providers of emergency services will be aware of the sensory, behavioral and social differences of individuals with ASD and how to appropriate accommodate their needs.

Professional Development: Expand evidence–based, high quality pre–service and in–service professional development, technical assistance, and mentoring opportunities to ensure that NH has a workforce that is capable and confident in its ability to support individuals with ASD to be fully included in all aspects of their community.

Funding: Funds from multiple sources–public and private, federal and state–will be brought together to ensure that NH can develop and sustain the infrastructure, workforce, and knowledge–base necessary to meet the public health challenges of ASD, and that the individuals served by this system receive medically necessary treatment(s) and the ongoing support needed to live a productive life of their own choosing.

The Commission’s Report can be found online at: http://www.dhhs.state.nh.us/DHHS/BDS/default.htm.

Best regards,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, November 18, 2008 4:55 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00005] suggested research

Professor Dr. Minshew in the University of Pittsburgh has been doing FMRI studies of autistic people. She established a ceiling IQ after a few years because the FMRI patterns of the brains of people above IQ 120 or so produced different patterns in response to solving puzzles. The majority population of course needed study. However, research into those above 120 would be a good project for many things that it might reveal.

It would give graduate students good dissertation projects.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, August 19, 2008 8:41 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00006] RFI: priorities for IACC

I am the father of [redacted personally identifying information], a 9–year-old boy with autism. He is bright and healthy, and interacts well with familiar people. His most significant challenges are in the areas of joint attention and marked delays in language use.

I give some details to our case history below, but the executive summary of my feedback for the IACC is this:

  • even where a school district is doing everything required of it under law, there is a gap between services needed and services provided
  • parents by and large try to be advocates for their children, but don’t have the resources or expertise to drag services out of potential providers (Regional Centers, school districts, HMOs) all of which have tight budgets, which leads to an unhelpful adversarial relationship
  • there is a lot of research, and there are a lot of therapies, but it remains supremely difficult to deter-mine which therapies are best suited for a particular child
  • public awareness and advocacy for these children has improved markedly in the last decade, and with number of affected children approaching 1% of the population, very few people are untouched by Autism, but public resources fall far short of being in proportion to the breadth of this disorder

[redacted personally identifying information] is enrolled in a competent special education program through our local school district (Saddleback Valley USD, http://www.svusd.org) which tries to meet his needs within an increasingly impacted budget. He is also tracked by the Regional Center of Orange County, http://www.rcocdd.com/ but the services they offer seldom seem to line up with [redacted personally identifying information]’s or our family’s needs. Our HMO (Kaiser) has consistently denied our requests for therapy. We live on a modest middle–class income and cannot afford the thousands or tens of thousands of dollars private therapists would cost.

As a devoted and well–educated parent, my principal frustrations are getting services, and determining what my son needs.

He was diagnosed by an expert in the field (Dr. [redacted doctor–patient information]) at around 18 months. He was enrolled at the Regional Center, and received broad, intensive, and appropriate therapies (speech, physical, occupational) until he turned age 3. He made excellent progress. At that point, under California law, he became the responsibility of the school district, and – without detracting from [redacted personally identifying information] trained, dedicated, and compassionate teachers, and an administration which is scrupulous about meeting the terms of applicable laws (including ADA)–from a parent’s point of view, the services he has received for the last six years are a pale and feeble contrast to the professional third–party services he received through RCOC. Some parents resort to lawyers to compel services and the school district spends a hugely disproportionate share of its limited resources in response. Parents who don’t like that kind of manipulation are left shortchanged.

This ties into my second frustration. ASD is a spectrum disorder. Different children have widely different needs. There is an abundance of potential therapies, but only some are proven by research, and nobody, NOBODY seems to be able to look at our child, and say “yes, this is a case where therapy X has been shown to be effective.” I read as much as I can, I attend seminars as I am able to, and I work closely with my son in the home setting, but I really don’t know what I’m doing. When the school district does its best to say “ here are some reasonable goals for [redacted personally identifying information], in light of his past performance” all we can do is accept them. We are not able to independently say, “on the other hand, this is demonstrably what [redacted personally identifying information] needs, and therefore you must provide it.” The school district knows the law, and they have a team of experts which generates a mound of paperwork to prove they’re abiding by it, but as a parent I’m left thinking is that all? [redacted personally identifying information] is a smart little boy, but after six years with the school district, there seems to be less and less hope that he’ll make the kind of progress that will allow him any kind of independent life, and something is wrong with this picture.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, August 19, 2008 11:35 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00007] NOT-MH-08-016

It is indefensible that use of extremely dangerous physical restraints and seclusion unless there is some direct and immediate threat of serious injury to a client or stsaff is prohibited in institutions, residential placements and the like, but is not prohibited when the very same kids with autism are in schools.

I have been receiving contacts from parents of kids with autism from all over the country re how their kids have been physically harmed, and in some cases subsequently professionally diagnosed with PTSD as a result of school physical abuse via restraints and seclusion. Examination of state laws, regulations and practices shows that for all intents and purposes, kids with autism have no protections against these documented abusive practices in schools and are thus, ironically, safer when institutionalized than when they return to, or remain in their home communities.

To start, it is imperative that the federal goverment require reporting of each and every single incident of school use of restraints and, separately, seclusion, as well as reporting of injuries sustained by children when these are used. At this time, the anecdotal reports are legion, but since there is no single repository for reports, nor any mandate for such reports, the full extent of the abuse is unknown. What is known is that numerous instances in which kids have been harmed have not been reported to any authority with jurisdiction to collect the information and then seek some solution.

I am informed, and believe, that USDOE has fought for years to insure that the federal laws which protect persons with disabilities, including autism, are not applied to schools. It is time that this position, overt or covert, be confronted and reversed. It is also imperative that the fiction that school use of restraints and seclusion involves only issues of FAPE (free appropriate public education) and not issues of what is clearly abuse.

To be blunt, the American education and special education industries have neither the knowledge nor the skills to competently manage or modify behavioral problems of children with autism. As a result, staff are allowed to do whatever comes naturally. In institutions, this type of situation has long been found to lead to abuse, irrespective of the name used for the conduct – it is time that the standards for institutions are applied, uniformly, to schools.

To put it another way, a kid who is killed due to prone restraint is dead, and it doesn’t matter whether the prone restraint leading to death was done in an institution, a residential facility or a school. I am quite afraid of what will happen when young children with autism who have been abused in this fashion grow to middle school age and older. Parents report to me that their kids are starting to fight back. It is inevitable that we will start having significant numbers of serious physical injury and deaths as a result.

One would hope that the situation could be dealt with in a humane fashion before this happens.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 8:39 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00008] NOT-MH-08-016

I would recommend research regarding the “Rapid Prompting Method” developed by Soma Mukhopadhyay. There are examples of very dramatic increases in autistic individual’s ability to communicate through Rapid Prompting, but I do not believe the method has been evaluated through more formal research methods. A very small number of students with whom I am familiar who have been introduced to RPM have gone on to show thinking and communication abilities far above those they were able to demonstrate prior to RPM.

[redacted personally identifying information] School Psychologist

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 10:36 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00009] Autism

For those concerned:

I feel that programs to cover all people with autism at all ages need to be provided and that estimates of those who will reach adulthood must be designed so that insurance, government agencies, and parents understand the dire consequences we face if these programs are not planned and implemented!

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 11:09 AM
To: IACC Services (NIH/NIMH); IACC Services (NIH/NIMH)
Subject: [Comment 00010] NOT-MH-08-016

A well–done, independent study of vaccinated vs. unvaccinated populations (with all health outcomes studied) needs to be performed.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 11:22 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00011] NOT-MH-08-016,

As a Mom with a 7 year old Autistic son, here is our list of S.O.S.:

  1. Assistance with CAPD (central auditory processing disorder). This disorder impedes the child’s ability to LEARN. They are unable to process incoming verbal information correctly. This disorder is “not recognized” by the school districts as an “educational need.” Our son has been taught the TEKS for kindergarten for 2 years but has yet to mastered those TEKS, and still tests in the low to mid kindergarten level. Without help in this area, he will struggle his entire life to learn. Keep in mind his cognitive abilities are in the average to high average range. His cognitive abilities continue to rise, but his achievement continues to drastically drop year after year.
  2. Intensive early intervention with fine and gross motor skills. Without assistance in these two areas, children struggle throughout their entire school life with many difficulties, especially in the written language area.
  3. Intensive early intervention with oral defensiveness and speech therapy. A child who cannot express his needs captipultes him into a “behavioral problem” child. They ONLY way a child can communicate their needs when they are nonverbal is through their hands. If they have the ability to verbally express their needs, then the inappropriate behavior disappears. If more people would treat the “cause” and not the “behavior,” these children would flourish early in life and begin life in a more positive direction.
  4. Be a part of the solution and not a part of the problem. Most parents cannot afford the intensive treatment for these children, but get caught between the insurance companies and school districts battle over who is responsible for providing help to these kids. If they are lucky enough to get SOME help early on through insurance coverage, when they start school, they then get caught up in the battle between NCLB and school districts battle over what services will be afforded to these children. Right now NCLB mandates that school district pay for these services and the school districts are refusing to provide the necessary services until they are properly funded by NCLB. Who looses – – our children and the future of America. These children need a concrete outlet to acquire the services they are desperately in need of without cost to the parents who cannot afford to seek out such help.

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 12:32 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00012] RIF: NOT-MH-08-016, Comments related to the Combating Autism act

Submitting comments on RFI: NOT-MH-08-016

I am writing as a parent of an autistic child. I would like to see the NIH⁄government establish a Children with Autism Trust fund. The fund would provide autistic children and their familes access to free services including therapy, dietary and nutritional treatments, family counseling, behavioral therapy, educational assistance and recreational opportunities (ex: swimming lessons etc..) .

These services should be free and easily available via a voucher for the families so they could choose where to go for services. Money from the trust could also be used to provide grants for schools, communities, special needs advocacy groups and camps. Grant money could also to educate⁄train law enforcement professionals and teachers on autism and for outreach and education to the general public.

Parents of autistic children have tremendous stress due to the emotional and financial burden of raising an autistic child. Establishing a Children with Autism Trust fund would ensure that every child effected by autism is getting the care and services they need in the long term so that parents don’t have to worry about the future or going into debt.

Thank you,

[redacted personally identifying information]
parent of a 4 year old boy with autism

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 3:48 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00013] NOT-MH-08-016

– – On Wed, 8/20/08, [redacted personally identifying information] wrote:

From: [redacted personally identifying information]
Subject: Autism Community Needs
To: iaccservices@mail.nih.gov
Date: Wednesday, August 20, 2008, 3:45 PM

Where can I begin?

Dental:

When our children have to go to a cleaning, many with sensory defensive issues must be sedated. This costs families a lot of money (for example, hundreds of dollars in co– –pays) –even when they have cavities, or must have teeth pulled, many children with autism must be sedated. A dental trust fund, or locally–implemented grant program would be very helpful for famlies facing autism. Even training programs for dentists who serve the autism community (maybe a certification that can be earned) would be helfpul.

Educational:

There should be an outreach campaign on the biomedical interventions that have helped families facing autism in reducing the symptoms of autism. For example, giving cod liver oil helps some children regain eye contact. This works, and families should have access to this type of information. Perhaps reaching out to www.autism.com, or telling families about special diets that have worked for so many of our families facing autism.

Respite:

Families facing autism sometimes have extraordinary issues in finding and affording appropriate respite care so that they can get the rest they need to address the extreme conditions they sometimes find themselves in. For example, many children with autism have sleep disorders (sleep very little), while others are extremely violent, and still others require and demand intensive attention to learn and maintain their safety. Often, extended family members are in denial and/or do not know how or want to help, and as a result, the immediate family of a child with autism gets no rest, and with the pressures of affording expensive cognitive, behavioral, and medical therapies, breaks apart. Our children deserve better than this. The divorce rate (reported to be approximately 80 percent) in the autism community is unacceptable.

Community:

There should be centers in each community where families can get the therapeutic, rehabilitational, and respite care they need all in one place. There should be educational resources for families, and perhaps an ombudsman to guide people through the maze of resources available through local and state sources.

This is only the beginning. I believe there should be regional roundtables to query the autism community that would address specific needs that vary by existing resources.

Thank you.

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 5:19 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00014] NOT-MH-08-016

Early identification is crucial. I wish my son had been diagnosed at age 5 rather than 14, so much suffering would not have occurred.

I feel another important issue should be the care and help of high functioning ASD youth when they transition into college or work. This is a crucial issue as mental health issues develop at this time in their lives and they are most at risk of being institutionalized or imprisoned especially if their parents are unable or unwilling to help. I have noticed transition college’s websites on the internet in certain states. This would be a fantastic idea especially if the government would require one in every state. There are thousands of extremely talented individuals that just can’t live on their own but are capable of and are doing very high tech computer work. My son is 22 and at age 19 he was qualified to work on [redacted private information] issues. There is no chance of him being able to get a job outside the family business doing this. Where are the older autistic’s? They just seem to disappear after high school.

Another thing that the state of Indiana is doing is requiring insurance companies to treat autism as a medical issue. This has been a lifesaver for us. We are starting with a therapist to see if social issues can be improved for a young adult (I hope so) so early social intervention is vital.

Are autistic’s included in the federal disabilities act? They should be if they are not.

Public awareness is important also, I love the way that autism is not hidden but put right out in the open. The more that people understand it, the more they may be willing to put up with an autistic persons idiosyncrasies.

Also, there is little to no help in rural area in identification and treatment.

Thank-you,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 6:51 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00015] RE: NOT-MH-08-016,
Attachments: NOT.doc

Please see attached response.

Thank you

[redacted personally identifying information]

Those who never try, never fail. And those who never fail, never learn morbidanderson

NOT-MH-08-016,

According to the Center for Disease Control and Prevention (CDC), Autism affects an estimated 1 in 150 people of which 1 in 94 are boys. There is an annual increase of 10%–17% in this disability category and an estimated 560,000 children between the ages of 0 and 21 in America are on the autism spectrum. Over the person‘s lifetime there is an average of $3.2 million dollars spent (Centers for Disease Control and Prevention, 2007). Early, intensive, and specific intervention has a direct impact on the prognosis or outcomes for individuals on the autism spectrum. This could significantly reduce the cost of meeting the lifetime needs for this population.

Preliminary reports from the National Autism Center‘s National Standards Project indicate that current research fails to meet the criteria for evidenced based best practices and further research is needed in evidenced based treatment approaches (National Standards Project Report on Autism Interventions, 2008). More than any other disability category parents, educators, and caregivers are continually searching for “what works” for children on the autism spectrum (Scheuermann and Webber, 2002). Scheuermann and Webber (2002) contend that too often educators are charged with providing educational programs to students on the autism spectrum without sufficient background and training to provide effective intervention.

In light of the increasing numbers of students being diagnosed with an Autism Spectrum Disorder (ASD) and the need for intensive intervention with evidence based treatment approaches, it is important that institutions of higher education rethink and revise coursework in teacher preparation programs. Teacher education programs must equip pre–service teachers with the necessary skills to adequately serve students on the autism spectrum and to provide courses for in–service teachers to increase competencies. It is important we make funds available to prepare teachers and conduct research on the effects of teacher preparation on the delivery of evidenced based programs and the subsequent impact on student achievement and success.

Centers for Disease Control and Prevention. Prevalence of ASD–Autism and Developmental Disabilities, Monitoring Network, Six Sites, US, 2000. Morbidity and Mortality Weekly Report. February 9, 2007. Vol 56 (SS–1).

Pennsylvania Training and Assistance Network. National Standards Project Report on Autism Interventions Web Cast. April 16, 2008. http://www.pattan.k12.pa.us

Scheuermann, B. & Webber, J. (2002). Autism: Teaching does make a difference. Toronto, Canada: Wadsworth Group.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 20, 2008 11:17 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00016] NOT-MH-08-016

To Whom It May Concern:

As the aunt of three-year-old autistic twins, I thank you for this opportunity to provide input about crucial supports for people with Autism Spectrum Disorders and their families. One area of need is nutrition for children and adults with ASD.

My nephews are extremely picky eaters, as are many people with ASD, and their parents and I worry about their nutrition. My sister spends an inordinate amount of her scarce time and energy searching for things they will eat, and ensuring that those things are on hand wherever they go. The boys consume enough calories to grow, but their diet has very little variety. When they each rejected breaded chicken patties, which had been a mainstay, my sister struggled for months to find a substitute for each of them (since their tastes differ).

When I read an eloquent blog posting by an adult with ASD, and the many comments posted by people with ASD and their parents, I realized that eating properly is a lifelong issue for many (or most?) people with ASD. The article is at http://thiswayoflife.org/blog/?cat=38

Issues include:

  • eating at regular intervals;
  • eating appropriate quantities of foods (neither too much nor too few);
  • difficulty finding foods whose textures are tolerable; and
  • managing the psychomotor tasks of eating.

It is also clear that for many people, few supports exist except for friends and family who step in and help.

What supports might help? Others know better than I, but here are some ideas:

  • Guidance for parents about how to establish good eating as a habit, and to help the child develop responsibility for his/her own eating routine;
  • Support groups or networks, in person or online, specifically about issues of eating and ASD, where people with ASD and their friends and family can share strategies, lists of foods to try, etc.
  • Inclusion of best practices around eating in the training and guidelines for social workers, teachers, group-home staff, doctors, and other professional care givers for those with ASD.
  • Nutritionists on teams of care givers and care managers for people with ASD.

Guidelines and best practices for professionals should include:

  • asking a person with ASD in detail about what, when, and how much they eat, rather than asking in broad terms;
  • supporting each person with ASD in taking as much responsibility for their own eating as that individual can handle, and prompting or assisting the person with what they cannot (yet) handle;
  • not assuming that normal- or over-weight individuals with ASD are receiving proper nutrition; and
  • putting effort into finding many varied foods that a particular individual with ASD finds palatable.

Thank you very much for gathering this information from the public. I look forward to seeing the ideas implemented!

Yours truly,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, August 21, 2008 8:41 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00017] Autism services

As the parent of a 24 year old with PDD-NOS I am finding a real lack of services for adults who are higher functioning. My son lives on his own and has friends he made from the VIP program [redacted personally identifying information]. However the young men would very much like to meet girls , and there is no social networking group for his age and level of disability. There is also no online service I could find.

His roommate has Asbergers and is much more verbal. He has had a number of dates from online dating sites but as soon as the girls meet him they make an excuse not to see him again.

There are a number of agencies that have services for the more severely disabled, but there is a real lack for the higher functioning young adults.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, August 21, 2008 10:09 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00018] NOT-MH-08-016

As a family physician who cares for people with ASD and a parent of a child with autism the priorities I see are:

  1. What models of health care service delivery for people (especially adults) with autism are effective? What additional resources are required to coordinate care, obtain a history and implement health care plans effectively?
  2. What are the most cost effective ways of delivering high quality medical care to adults with developmental disabilities including autism? What are the key components of a health care service delivery system? (e.g. Health Care providers and caregivers trained in what and how? Sophisticated information systems shared across interdisciplinary team members? Smaller patient panel sizes? Additional staff such as care coordinators and behaviorists? Multidisciplinary models?)
  3. What training do physicians need in order to care for adults with autism and what curricular models are effective?
  4. How can screening for autism be implemented in a family medicine practice? (CHAT is easy to administer, but has low specificity so it generates a lot of false positive referrals and we don’t have enough specialists to process those, Ages and Stages doesn’t screen well for autism)
  5. Is a doctor’s office the best place to screen the population for autism and other developmental disabilities (Unlikely as there isn’t a good way to observe peer interaction and kids act very atypically in doctor’s offices as they anticipate shots and other uncomfortable procedures. They are also bored and confined to a small, not particularly kid–friendly room. Developmental problems that would be apparent watching a kid on a playground or doing an art project with peers might be very hard to detect in a doctor’ s office as they clutch their mother and get suddenly shy? Is there a better model for screening the population than using physicians and doctor’ s offices to do it?)
  6. What are the long term effects of psychotropic medications, especially risperidone in people with autism?
  7. What screening and observation screening tools for caregivers are most effective for detecting a possible change in behavior or function that could signal a medical problem that requires medical evaluation? What are the prerequisites (literacy, language skills, length of time knowing the person with autism, etc.) are required to implement the screening and observation tool.
  8. What percentage of adults with autism are on behavior modifying medications? Are they benefitting from them? Are antipsychotic medications being used as non-specific sedation for “challenging behavior” because we haven’t developed and funded appropriate housing and vocational services that address the sensory, social, executive function and behavioral needs of adults with autism? How many adults with autism now have metabolic complications from antipsychotic medications? How many of the adults who have metabolic complications from antipsychotics have caregivers and doctors who can work with them to provide the care they need once they develop metabolic complications from their medications? In our attempt to find a cheap alternative for intensive behavioral support, are we just creating a generation of autistic adults who are too stiff and sedated to do much and who have diabetes?
  9. What are the most effective ways to deliver behavioral services to adults with autism? How much do they cost and what are the prerequisite skill sets needed to implement a behavior plan effectively? (e.g. can people who make $10/hr implement a behavior plan or do adults with autism need direct caregivers with more education and training?)
  10. How many adults with autism are receiving medical and dental care? Is the care they are receiving effective in improving or maintaining function? Providing easy access to behavioral health and mental health services? Well coordinated? Provided by trained clinicians who have access to the full range of specialty services?
  11. What is happening to the health and quality of life of people with autism (and other developmental disabilities) living with parents or family members who are over age 60?
  12. HIPPA is a punitive law that transfers responsibility for managing access to confidential medical information from doctors to patients and greatly restricts a doctor’s ability to communicate freely with all members of an interdisciplinary team especially teams that include unpaid and unlicensed staff. What has been the consequence of this law on people with communication disorders and intellectual disabilities (e.g. those who are at highest need for well coordinated care and who do not have the mental or physical capacity to fill out dozens of consent forms)?
  13. Informed consent requires sophisticated communication and intellectual skills that many people with intellectual disabilities do not possess. However, the vast majority of adults with autism and DD who do not have mental capacity to make medical decisions are unconserved. In other words the law assigns the right to make informed consent decisions to people who do not have the mental capacity to do so. Has this been effective in protecting the rights of people with DD/ID and providing adequate access to medical care?
  14. Current law does not allow any form of brief physical restraint for medical procedures. Although this legal policy may protect people with DD/ID from abuse, has it been effective in protecting people with DD/ID from neglect and has it allowed adequate access to medical care?
  15. What medical problems do people with autism develop as they age?

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, August 21, 2008 10:30 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00019] NOT-MH-08-016

Hello. I am a licensed psychologist in New York and [redacted personally identifying information] for a large nonprofit organization that works with individuals with disabilities. I recruit, train and supervise preschool special education teachers in a program model that uses methods and principles of applied behavior analysis (ABA). A chronic problem I face is recruiting teachers who have ABA experience but who lack the master's in special education required by the New York State Department of Education (NYSDOE). More commonly, the people I want to hire have a bachelor's and master's in psychology from colleges that emphasize ABA. Other states (Massachusetts, Florida) seem to be much farther along than New York in figuring out how to hire teachers with psychology backgrounds rather than teachers with special education backgrounds. I would like to see the NYSDOE update the certification requirements for teachers to include an alternative ABA/psychology track. I am happy to talk further on this subject.

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, August 21, 2008 2:34 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00020] Questions on support and services

I am responding to an email I received asking for people to forward questions on support and services to this location.

My son is autistic and has now developed OCD. My insurance will cover all OCD related issues but if autism is mentioned at all it will not be covered.

Also, I am unable to get life insurance on my son. As far as I am aware there is no link between autism and early death, so why will life insurance companies not cover an autistic child?

Thank you,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, August 21, 2008 3:01 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00021] NOT-MH-08-016

I Impact of Prior Research on Educational Programming for students with ASD.

As a special education administrator and school psychologist working directly with ASD students across the age spans, I believe that research has greatly expanded our knowledge regarding Best Practices for early intervention of students with ASD within the public school system.

Our district and SELPA have been able to utilize this knowledge to create a continuum of special education services that span across preschool and elementary programming that have proven to be highly effective in maximizing the learning abilities of these students.

Of particular success has been our district’s/SELPA’s ability to utilize a Transdisciplinary, consultative approach to educating these children, allowing for a remarkable success rate within the general education setting.

The wealth of research regarding effective educational interventions to address the unique communication, socialization and sensory needs of these young children have provided a solid foundation for the development of effective educational programming within the school systems who have access to the resources created by such research.

II Priority of for Future Research on Educational Programming for Students with ASD

I believe a priority for Future Research is how to develop programming that addresses the social and prevocational/vocational development of students with ASD as they transition into high school and adult transition programs.

Within the High School:
It has been my experience that the intensified social and prevocational demands of high school drastically impact the mental health needs of these students. Anxiety and Depression top the list of mental health concerns with ASD. Research on how best to coordinate interagency services and provide mental health supports to these students is vital in maintaining the ability of these students to remain within Less Restrictive Educational Settings.

Within the Transition Programs
The vocational needs of students with ASD require specialized programming to maximize future employment success. Research on how best to create successful transition programs for these students is vital.

From: [redacted personally identifying information]
Sent: Thursday, August 21, 2008 4:38 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00022] NOT-MH-08-016
Attachments: 1446969143-Interagency Autism Coordinating Committee Services Subcommittee For ASD.doc

Here are my thoughts.........

[redacted personally identifying information]

Interagency Autism Coordinating Committee Services Subcommittee for ASD

My husband and I have 3 sons. The youngest is moderately/severely autistic. Were do I begin? The needs are so very great and in every area too. I will try to cover each of the areas you listed on your announcement.

Education Services – in our area were severely lacking (really non–existent) when our son was young enough to derive the most benefit from them. This is somewhat improved now, however, there is still a great ‘reluctance’ on the part of the school district and intermediate unit to provide evidence based services. Actually, I don‘t believe they even understand what that means. Their lack of response to the problem is causing lifelong setbacks for children with the most significant needs. This will translate into mega costs in the future when the government will end up supporting these children for the rest of their lives. Our son turned 18 this summer. He is capable of gaining and even maintaining skills, however, this responsibility has fallen almost entirely upon my husband and myself due to the above reasons. Currently, he is still in his local middle school where he towers above his classmates, shaves, and is becoming very frustrated with the immature goals they set for him such as making marks on a paper with a crayon. This is a waste of precious time and it‘s wrong. He needs to learn to communicate, develop leisure skills, job skills, life skills, and many things. He has no functional reading or math skills and cannot write his name yet and is just now becoming verbal! This age group (young adults and adults) is being ignored. Both groups can still make and maintain gains. School programs and home programs need to coordinate with each other so they don‘t waste time working against each other.

One suggestion I have for ‘education’ is that today‘s graduating teachers NEEDto be trained in Applied Behavior Analysis. Without this training, they are inadvertently reinforcing inappropriate and sometimes dangerous behaviors!

School districts should be made to utilize the services of Board Certified Behavior Analysts. The government could save billions in the future simply by reimbursing school districts for this service while the children are in school. Students, families and the school programs would realize Mega gains.

Health and Medical Services – Again it is a continuous fight to get anyone to investigate anything except for acute care needs such as colds, ear infections, etc. Many of these kids have underlying medical problems which when alleviated decreases some of the problem behaviors. We need a standard medical testing protocol to use to screen for these problems. Of course, a scientifically proven treatment and CURE would be wonderful. Desperate parents fall victim to charlatans and waste thousandsofdollars on snake oil treatments.

Housing –Safe housing needs to be developed so that people with autism can live as independently as possible utilizing the support of highly trained people that can continue to teach them well into adulthood.

Transitions/Employment –Again, this requires skilled planning and training by Board Certified Behavior Analysts. It should begin well before the age required in IEP‘s because, often it isn‘t addressed even at that point.

Community Inclusion/Safety –Board Certified Behavior Analysts are qualified to develop these types of programs.

Finances/Estate Planning/Guardianship –all major concerns. We fear what will happen to our son when we are gone. Additionally, our two older sons will shoulder this burden unless something can be done NOW. Besides our afflicted son‘s life being destroyed by autism, our lives have been destroyed by it. We fear the next generation of caregivers (who are bound by a sense of family and duty) will have their family lives destroyed too. God forbid they could possibly have a child of their own with this devastating disease if the causes are not found very, very soon.

From: [redacted personally identifying information]
Sent: Thursday, August 21, 2008 4:54 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00023] RFI identifier, NOT-MH-08-016

I am the parent of a child diagnosed with Autism. [redacted personally identifying information] is 19. I feel I do have ASD as well. I am undiagnosed. Our family has always said [redacted personally identifying information] is a mirror of me. [redacted personally identifying information] walked with her class last June as part of her graduation, but she still we remain attached to the school. School was a nightmare because they said she was “academically not qualified”. They never took into account the functionality piece. I had problems ever since she was finally diagnosed at 17. I always knew there was something wrong. Back in 91 she was diagnosed as Neurologically Impaired. We would be willing to go to University of WA should studies be needed. We are now having a hard time working with the schools for transition services. She is in CT now and I know that they have no problems providing services after that PJetal lawsuit. We do have a horrible time in WA getting services for transition. Parents are having to not only learn the Federal law, we are required to "know" it. The reason for this is that the school is always trying to slide as much as possible.

I have been pretty successful in the computer field. When I got to be a programmer, I felt stress more and wasn't able to preform to what my supervisor deemed successful. I know I could only do as good as I thought. I think for me the least stressful the job, the better. I was a great cashier because..it was like a script. I could greet the people after a while..look them in the eye.. and say have a nice day. My fingers worked like majic on the cash register (they were manual key at the time) and I could count back change. The most stress there was balancing at the end of the day and when I realized I counted the change back, I could catch any mistakes there...it became routine. I have a lap band and cannot eat right for it. So I have alot of vomiting episodes. I had friends when I lived in CT, but I finally met one here (after 10 years) who has a son with ASD. I moved to WA after I met my husband on the internet.

If you need further information from me or information on my daugher, I have guardianship, please email me. We would be willing to go to University of WA should studies be needed.

[redacted personally identifying information]

It’s only a deal if it’s where you want to go. Find your travel deal here.

From: [redacted personally identifying information]
Sent: Thursday, August 21, 2008 11:49 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00024] NOT-MH-08-016

Education services:
Because every child is different, matching a child up to the most effective educational system is difficult. There is no universal solution that will be best for every child with autism.

The best approach would enable a child to transition smoothly from a more/less structured environment to a less/more structured environment, quickly, in accordance with the needs of the child, without penalty. (Penalties include more than 10 hours of paperwork, expensive doctor/specialist recommendations, wasted time justifying why a child needs to be moved to an administrator who couldn’t pick the child out of a lineup – in other words, penalties of wasted time and money that obstruct the child’s progress to a better learning experience.)

Health/medical services:
We have 2 HAPs and Medicaid. None covers therapies that work. From a lifespan point-of-view, if HAP/insurance companies covered effective therapies, this would be a non–issue. My boys would have had a chance to live independent lives, had insurance covered appropriate therapies.

Eventually the boys will end up with Medicaid only, and my daughter will have to play the Medicaid game when I pass away. I guess a good guide to the Medicaid system would be the most beneficial to us, in the long run.

Housing:
We will need good group homes for one, maybe both, of my sons. Locating a good group home, and getting put on the at least 2 years waiting lists, will become our priority.

Transitions/Employment:
Properly trained, my boys would work well. Like many autistic kids, they love to work. I don’t know how to find them a job that they would be good, though.

Community Inclusion:
I don’t foresee a future where special needs adults will ever be included.

Safety:
Safety is a big deal. My boys still don’t understand why a street or parking lot is dangerous. They don’t understand. I don’t know how to increase their comprehension. I wish that there were a police database that I could register my boys on, so that, in a worst case scenario, the police can recognize my boys and deal with them appropriately.

Finances:
Help to pay for the group home would be appreciated, whether in the form of a health care account that would be non–taxable or a even a tax credit. Really, anything would be helpful.

Guardianship/Estate planning:
We did our best with our will. We established a trust for one of our 2 boys with autism, but administration of the trust will be hard for the guardian. At some point the brunt of the care will be on her shoulders, and I don't know how to soften the blow.

My personal high–priority issue is to get the boys as much effective therapy as possible, now, so they will be in the best possible situation later. Unfortunately, since we are not made of money and can’t afford the therapies the boys need, and in our state insurances don’t pay, it looks like a group home for one boy, and ...I am not sure about the other. Some kind of assisted living.

[redacted personally identifying information]’s mom

It’s only a deal if it’s where you want to go. Find your travel deal here.

From: [redacted personally identifying information]
Sent: Friday, August 22, 2008 8:59 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00025] NOT-MH-08-016

Hello Azik Schwechter,

My name is [redacted personally identifying information] and I am a Pa licensed psychologists and a Board Certified Behavior Analyst. I am writing in response to your request for inquiries. Personally, I believe that autism services need to have more randomized control efficacy and effectiveness trials comparing different treatments for autism to one another, as well as comparing differ service delivery models such as home based versus center based services.

I believe with so much variation and so much unknown about treatment, IACC should set up multisite treatment comparisons similar to those performed by NIDA for drug and alcohol research. Indeed, since in many staes the services are already funded, it would appear easy to begin a process for evaluating effectiveness.

Thank you for your interest,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, August 22, 2008 12:02 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00026] NOT-MH-08-016

Hello, my name is [redacted personally identifying information], and I’m mom to 7 year old [redacted personally identifying information]. We’re from [redacted personally identifying information], Louisiana.

One educational service that I believe is important for students with autism is the use of motor–sensory integration to help youngsters regain self– regulation and increase focus. Temple University’s April, 2008 study results show that 91% of children in their study pool showed less stereotypical mannerisms and increased ability to key–in to education after engaging in weeks of sensory integration. See the article here by Pfeiffer and Koenig: http://www.temple.edu/newsroom/2007_2008/04/stories/aota.htm

While older data suggests that the preponderance of individuals with autism are cognitively impaired (excepting, perhaps Asbergers), we know that these standardized tests drill directly into the heart of our children’s disability. The students’ inability to easily process directions or requests; the social deficits (answer the questions so you make your teacher happy); and their frequently co–morbid attention deficits all horribly skew intelligence metrics. Roughly 78% of children with autism also show clear signs of sensory processing disorder that impacts their attention levels (Miller, Schoen, Coll, et al, February 2005).

I believe that many autistics are significantly more intelligent – and educable – than the public school systems give warrant to. Inattentiveness is the proverbial bushel basket covering the light within. Removing distraction makes it more possible for students with autism to learn and consequently become productive members of society.

Certainly, stimulant medications, behavioral intervention plans, modifications to curriculum, and other factors are helpful. But data is now pointing to the fact that sensory integration – specifically large scale vestibular and proprioceptive activities – helps not only autistics, but students with ADHD as well.

My belief in the benefits of sensory integration are solid enough that I have gotten approval from my son’s school district to donate and build sensory playgrounds at four local public schools. I am NOT writing to solicit donations from Autism Speaks! I am writing to share the fruits of research into sensory processing disorders, into safety guidelines, and the fact that we have funded a custom engineered sensory yard that will break ground next month. Perhaps this idea will spread.

We utilized “sensory attributes” analysis to choose equipment that would provide all proprioceptive and vestibular stimulation possible. Each special needs child at our public school has a written sensory diet, and this “KidSense” yard will fulfill every one of their needs. The stations alternate calming and revving activities, and are each enclosed within a “green room” of plantings to further buffer stimulation levels. The yard is placed close to classrooms, so that children get the sensory break they need to regain self–regulation, then get back inside the classroom to immediately harness that focus. The entire premise is education through recreation. We are building playgrounds that are grounds for learning. Please take a peek at [redacted personally identifying information] website below. [redacted personally identifying information] model is available to you free, no strings, nothing. If I can help 25 thousand kids instead of just 1 thousand in [redacted personally identifying information]’s school system, then that is my son’s legacy in life. It is for him that I built this and for him that I dream. [redacted personally identifying information]

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, August 22, 2008 12:32 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00027] RFI identifier

To whom it may concern:

I have tried all treatments out there, including ABA and OT, speech etc. The ONLY thing that has helped my child is Biomedical Intervention, and a complete halt of vaccinations. Chelation, special diets and supplements, as well as HBOT were the key! None of this is covered by insurance. This should be first and foremeost, as parents are losing their homes to recover their children. Those of us who watched our children disappear after vaccinations (my son’s reaction was instant, and not reported to VAERS) demand vaccine research. We are not a fringe group, as there are thousands of us. We are your scientific evidence.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, August 22, 2008 3:36 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00028] RFI identifier, NOT-MH-08-016

To the IACC Services Subcommittee:

Thank you for the opportunity to provide comments on the recently drafted strategic plan for ASD research, and feedback about high-priority questions. I have 2 positive comments to make about the plan, and 1 high-priority question.

First, I believe the strategic plan captures our greatest challenge with the following statement from page 17:

For all of these interventions, there is a range of improvement, with some individuals making profound gains and others showing little response. We do not know how to predict which individuals will benefit from any of the available treatments.

This statement is evidence that the committee realizes the importance of identifying potentially relevant characteristics of individuals with ASD within the context of their environments (family, home, school, medical, childcare, work, leisure, and other community variables) in order to begin to make reliable predictions about intervention outcomes for individuals.

Second, with regard to the description of proposed RCTs of comprehensive interventions on p. 20, it is encouraging to see “family functioning” included as an intervention target. I believe family functioning and specifically “building or strengthening family capacity” should be addressed across research projects proposed throughout the strategic plan. The cost of intervention cannot be measured only in dollars, but also the impact it has on the family.

An urgent priority for all of us, families and practitioners alike, is reconciliation between current recommendations regarding intensity of intervention, especially for young children with ASD, and the commitment of resources available to provide them. Is the committee addressing this issue across proposed intervention research projects?

Again, thank you for the opportunity for input.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, August 22, 2008 4:27 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00029] NOT-MH-08-016

OK , I Take this seriously .I hope you will also. I many years into the study of Autism. I am a Parent, A father , 57 . My youngest daughter 22, has been autistic all her life . Not until she was 18 and graduated from High School did I seek help . I was , and still am, appalled that all the systems of service that speak so eloquently to this problem in children can just turn their collective backs on our kids later . The research and the dollars go to education and universities . I don’t want to “cure “autism”. I want the systems funded by our tax dollars to support people like my daughter who have neurological deficits that make it difficult to navigate the world successfully . With my help she has graduated from college with a degree in grafic art .This past summer completed a 10 week internship program in NYC at [redacted personally identifying information]. Last summer she did the same at a local advertizing agency. She is talented . But not skilled at social awareness or at finding her way in a competitive world without support. What do I want ? I want this recognition . Simple. Then, build a structure of support around this understanding . The present system is CRISIS driven and I don't want crisis . I want mutual understanding .This is a spectrum disorder and no two people are going to present with exactly the same symtoms. The cause of autism may have many faces , including drugs mandated by Federal agencies. Don't run from this knowledge , investigate it . My experience should find me hopeful . I truly wish I was . And while I am grateful to so many people , I know we have just begun . And this is a fight . I fought and countless other parents fight to advocate for their children who will become adults who often cannot advocate for themselves. Please help us .

From: [redacted personally identifying information]
Sent: Friday, August 22, 2008 5:55 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00030] Autism Help

We need ABA therapy & Biomedical Interventions covered by Medicaid & insurance! We need more respite & Attendant care for those of us who chose to work from home to be with our kids. Help us help our kids to recover! It is possible!

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Saturday, August 23, 2008 10:41 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00031] NOT-MH-08-016

To whom it may concern,

As a mother of a 5–year–old son with Autism, I have several concerns regarding the medical and educational services he receives. Please understand, these are not complaints, merely concerns for the overall well–being of my son.

First, although my son’s direct medical care staff are very kind and understanding of his little “oddities”, many specialists in the medical field are not. For example, my son also has asthma and has been hospitalized for this a few times. Primarily, the first responder personnel, though thorough, were not prepared to deal with a child who has sensory issues. Second, the ER staff were also ill–equipped to address the sensory issues of my son. Finally, the specialists, such as respiratory therapist, the person drawing blood, etc were not prepared to work with a child with Autism. Of course, it is unrealistic to assume every member of a medical staff should be educated on the characteristic of those with ASD, but more in-service and/or preservice training is needed to increase awareness.

Second, as doctoral candidate, earning a PhD in Special Education, I have concern for the educational programs offered for students with “ high functioning autism”. In my region, there are educational programs for children with severe ASD and for those need additional academic support. Unfortunately, what is missing are programs designed to keep these students in general education settings for academics and social activities, but pulled out for sensory activities as needed. For example, my son is academically on grade level and is very social. However, due to his sensory issues we do not feel he will be able to handle all day, general education Kindergarten. Unfortunately, aside from a self-contained setting, or a inclusion setting in which he would be pulled out for academics, there is no other option.

Thank you for your time and for your assistance,

[redacted personally identifying information]

“There is nothing permanent except change.” – –Heraclitus

From: [redacted personally identifying information]
Sent: Sunday, August 24, 2008 11:02 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00032] NOT-MIH-O-016 - Autism Input
Attachments: NIMH-September2008-ASDconcerns.lst.doc

See Attached

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NOT - MH-08-016
Contact: [redacted personally identifying information]
Background: Mom of two young daughters with ASD (ages 6 and 3)

Education Concerns:

  • Minimal resources touted as appropriate under IDEA (ie: National Studies funded in part by US Dept of Education state ASD kids need school at least 5 days a week, 25 hours per week, year round). School District only offers ½ day Kindergarten and up to 8 hours of preschool 4 days a week. School District operates on a traditional 9 month schedule leaving us with little if any services during the summer.
  • Related Services such as speech therapy, occupational therapy and social skills training are generally offered 1x a week for a short amount of time (ie:15 minutes). These services are also performed by unqualified staff such as teachers and aides rather than actual therapists.
  • ABA not always offered. When offered it is extremely limited (minutes per day not hours) and provided by school staff who may not be trained or received minimal training from District employee that attended one day training seminar.
  • School District testing performed by non–qualified staff (ie: special education teacher rather than audiologist or school psychologist). Test scores misrepresented and/or over inflated to avoid providing additional services.
  • Failure to identify all suspected disabilities as required by IDEA in order to avoid providing additional services. Below is a list of examples:
    1. 6 year old exhibited significant sensory processing issues at age 2 and the District documented such in her education records. However, Occupational Therapy services not provided until 18 months later and only after we requested such.
    2. 6 year old exhibits extreme anxiety in new and unpredictable school situations. School District proposes 15 minutes of social skills training weekly. Private Neuropsychological testing diagnoses Anxiety Disorder and recommends more intense services including 1:1 counseling.
    3. 3 year old was not progressing sufficiently despite 2 years of Early Intervention. We suspected cognitive and/or other disability but the District claimed no problems beyond Autism. Child tested privately and found to have Complex Partial Seizure Disorder. Skills began improving dramatically once anti–seizure medication in place.
  • No accountability under IDEA for non–compliance. State IDEA Complaints filed but State Office of Education refuses to provide decision with findings of facts and conclusions for all allegations as required by IDEA. We filed complaint against the State with Office of Civil Rights (OCR) at US Dept of Education. They claim no jurisdiction with IDEA issues and refers to Office of Special Ed Programs (OSEP) at US Dept of Education. OSEP acknowledges jurisdiction with IDEA but refuses to investigate individual complaints and/or enforce compliance.
  • Parents are made to feel burdensome when actively advocating for appropriate services and compliance with IDEA requirements

Medical Concerns:

  • Health Insurance does not recognize Autism appropriately and is allowed to deny appropriate services such as ABA and Sensory Integration as not medically necessary.
From: [redacted personally identifying information]
Sent: Sunday, August 24, 2008 4:26 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00033] IACC Priorities

Just a check list of some specific things that often get overlooked. (I am coming from MO if that helps you to decipher my perspective)

Out of School Time Support Solutions

  • Full year school-ESY is no where near enough for a severe child
  • ASD specific trained staff to provide before and after school care either on property at the districts or at a community location
  • ASD specific location for before and after school care – seonsory appropriate, activity appropriate etc.
  • community integration opportunities in these settings-peer role models much better state childcare subsidies for kids in ASD spectrum easier access to 1:1 Before – After-Off child care – if the child’s needs are such wider income qualifying ranges for state subsidized childcare

Family improvement opportunities

  • supported by quality before and after school care – allows both parents to work
  • family counseling specific to autism - counselors who have knowledge of ASDs–85% divorce rate! Higher divorce–higher likelihood of institutionalization
  • respite availability – used to be covered by county boards of services and by dept of MH but budget cuts and legislation have removed almost entirely from MO. Best practices – I've heard – is one weekend a month plus the before and after school care
  • no help in respite and before⁄after⁄out of school will result in more institutionalization. Supporting In Home is far more cost effective than $50–75k annually for institutional support – for the rest of their life once they enter in most cases
  • family training on Discrete Trial teaching, Positive behavior intervention and dietary intervention options

Financial support –

  • many families are financially very strapped due to one parent not being able to work – school calls often and asks that their kids be picked up or the child ends up on Homebound indefinitely (not legalbut it does happen) because the school doesn't understand the basic principles of caring for and educating and child with asd some helpful options
    • before and after school care – REQUIRED BY LAW– right now it is “ required to be tried ” by OCR/ADA at the school or it’s entities but they are not required to keep them in the program or change the existing program to accomodate them–generally get expelled due to lack of staff skill to support safely and⁄or behaviors
    • parent incentives to return to school in order to work in the social services field or work there now if they are qualified
    • forebarance on existing student loans for the parent at least untill their child turns 18 and/or the child is in an appropriate program
    • more quality and varied community integration and supported living for post high school
    • more quality support by designated agencies such as VR to appropriately support kids in the ASD spectrum in higher learning including on line degrees (MO does not allow VR to support on–line school at this time.)
  • ability for families to save funds to pay for emergencies or buy a car with cash as opposed to keeping – some helpful options them so poor (in order to recieve ssi and MC) that they end up taking out high interest loans and credit cards instead. If families can go to work they can pay off cards, stay out of debt, prepare for the future of the parent, prepare for the future of the child, pay off old student loans and pay their fair share of taxes.

Overall, a little extra support now will reduce the number of under 21 kids that would likely be institutionalized and maybe keep them from ever having to be.

Schools

Requirement for schools to activly work with their local PTI – Parent training and information Center. Invite them to present parent training on property. Invite them to set up at building events. Require the school to send a letter to ALL families stating that if the parent thinks the child needs extra education help but they aren’t sure how to discuss with the school the parent can call the PTI. Contact info and description of the PTI included in personal mailing. They are required to publish other letters⁄postings re: AYP⁄NCLB⁄Child find. This would be very similar. Most families DO NOT know that PTI’s exist. Although they are required to exist no one is required to tell people about them.

Child find –

Schools should be required to have families participate in the portion of Child Find called Review of Existing Data. Right now they can make the decision to evaluate or not without parent input.

An additional qualifying educational category (or expansion on Autism) should be Asperger’s⁄PDD⁄HF Autism – specific to communication skills impact on the entire education⁄functional⁄life experience not just specific to academics. Often times the child should qualify for this specific reason (under ASD or OHI) but the school is reluctant to do so for fear of being accused of over identification. This factor alone could ruin a person’s ability to access needed education and support in regards to Transition to real life. Who cares how well they function academically if they can never get access to a real job due to lack of any social skills. yes, it could be covered under a 504 and should be by law but that doesn't mean it will happen. Most schools totally ignore their responsability under 504’s and the parent doesn’t knwo they exist much less how to get one enforced. Any reason we can’t ask for an IEP specific to social skills and transition. The EDUCATION that ASD is effecting is LIFE and FUNCTIONAL – that is still education. PLAAFP–Present Level of Academic Acheivement and Functional Performance-is the new name for Present level, for good reason that will serve these students well.

So much more to say about schools but I don’t have that much time.

If any of this didn’t make it to the right place please kindly forward. Any further questions feel free to contact me. Also, if there will be public hearings of any kind related to this I would like to participate.

[redacted personally identifying information]
full time advocate⁄parent educator
Mom to [redacted personally identifying information]– 9 yo low language and considered moderate to severe asd
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Sunday, August 24, 2008 4:28 PM
Cc: IACC Services (NIH/NIMH)
Subject: [Comment 00034] NOT-MH-08-016

Just a check list of some specific things that often get overlooked. (I am coming from MO if that helps you to decipher my perspective)

Out of School Time Support Solutions

  • Full year school–ESY is no where near enough for a severe child
  • ASD specific trained staff to provide before and after school care either on property at the districts or at a community location
  • ASD specific location for before and after school care – seonsory appropriate, activity appropriate etc.
  • community integration opportunities in these settings-peer role models much better state childcare subsidies for kids in ASD spectrum easier access to 1:1 Before – After-Off child care – if the child’s needs are such wider income qualifying ranges for state subsidized childcare

Family improvement opportunities

  • supported by quality before and after school care – allows both parents to work
  • family counseling specific to autism - counselors who have knowledge of ASDs–85% divorce rate! Higher divorce–higher likelihood of institutionalization
  • respite availability – used to be covered by county boards of services and by dept of MH but budget cuts and legislation have removed almost entirely from MO. Best practices – I've heard – is one weekend a month plus the before and after school care
  • no help in respite and before⁄after⁄out of school will result in more institutionalization. Supporting In Home is far more cost effective than $50–75k annually for institutional support – for the rest of their life once they enter in most cases
  • family training on Discrete Trial teaching, Positive behavior intervention and dietary intervention options

Financial support –

  • many families are financially very strapped due to one parent not being able to work – school calls often and asks that their kids be picked up or the child ends up on Homebound indefinitely (not legalbut it does happen) because the school doesn't understand the basic principles of caring for and educating and child with asd some helpful options
    • before and after school care – REQUIRED BY LAW– right now it is “ required to be tried ” by OCR/ADA at the school or it’s entities but they are not required to keep them in the program or change the existing program to accomodate them–generally get expelled due to lack of staff skill to support safely and/or behaviors
    • parent incentives to return to school in order to work in the social services field or work there now if they are qualified
    • forebarance on existing student loans for the parent at least untill their child turns 18 and/or the child is in an appropriate program
    • more quality and varied community integration and supported living for post high school
    • more quality support by designated agencies such as VR to appropriately support kids in the ASD spectrum in higher learning including on line degrees (MO does not allow VR to support on–line school at this time.)
  • ability for families to save funds to pay for emergencies or buy a car with cash as opposed to keeping – some helpful options them so poor (in order to recieve ssi and MC) that they end up taking out high interest loans and credit cards instead. If families can go to work they can pay off cards, stay out of debt, prepare for the future of the parent, prepare for the future of the child, pay off old student loans and pay their fair share of taxes.

Overall, a little extra support now will reduce the number of under 21 kids that would likely be institutionalized and maybe keep them from ever having to be.

Schools

Requirement for schools to activly work with their local PTI – Parent training and information Center. Invite them to present parent training on property. Invite them to set up at building events. Require the school to send a letter to ALL families stating that if the parent thinks the child needs extra education help but they aren't sure how to discuss with the school the parent can call the PTI. Contact info and description of the PTI included in personal mailing. They are required to publish other letters⁄postings re: AYP⁄NCLB⁄Child find. This would be very similar. Most families DO NOT know that PTI’s exist. Although they are required to exist no one is required to tell people about them.

Child find –

Schools should be required to have families participate in the portion of Child Find called Review of Existing Data. Right now they can make the decision to evaluate or not without parent input.

An additional qualifying educational category (or expansion on Autism) should be Asperger’s⁄PDD⁄HF Autism – specific to communication skills impact on the entire education⁄functional⁄life experience not just specific to academics. Often times the child should qualify for this specific reason (under ASD or OHI) but the school is reluctant to do so for fear of being accused of over identification. This factor alone could ruin a person’s ability to access needed education and support in regards to Transition to real life. Who cares how well they function academically if they can never get access to a real job due to lack of any social skills. yes, it could be covered under a 504 and should be by law but that doesn’t mean it will happen. Most schools totally ignore their responsability under 504’s and the parent doesn’t knwo they exist much less how to get one enforced. Any reason we can't ask for an IEP specific to social skills and transition. The EDUCATION that ASD is effecting is LIFE and FUNCTIONAL – that is still education. PLAAFP–Present Level of Academic Acheivement and Functional Performance–is the new name for Present level, for good reason that will serve these students well.

So much more to say about schools but I don't have that much time.

If any of this didn’t make it to the right place please kindly forward. Any further questions feel free to contact me. Also, if there will be public hearings of any kind related to this I would like to participate.

[redacted personally identifying information]
full time advocate/parent educator
Mom to [redacted personally identifying information]– 9 yo low language and considered moderate to severe asd
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Monday, August 25, 2008 8:45 AM
Cc: IACC Services (NIH/NIMH)
Subject: [Comment 00035] NOT-MH-08-016

It has been difficult to find social skills groups for my 14 year old son who has PDD-NOS. Most groups are for very young children or specify Asberger's level. Social and communication skills are high priority for a successful transition to jobs in the community and for friendship development. [redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Monday, August 25, 2008 10:03 AM
Cc: IACC Services (NIH/NIMH)
Subject: [Comment 00036] NOT-MH-08-016 Autism Spectrum Disorders

Autism and Autism Spectrum Disorders are developmental disorders with many features of mental illness. At the local, public system level, both developmental disability and mental health organizations are frequently, and appropriately, involved in providing services. There is often confusion, however, about where responsibility lies for overall case management and treatment planning. The result is that no single agency takes responsibility for developing a single treatment plan; coordinating the array of services necessary; communicating with family members; etc. For a disorder as complex, longstanding, and challenging to treat as Autism, it is essential that a single point of responsibility (especially in public systems) be established to develop a treatment plan, and coordinate the various elements of service.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, August 26, 2008 1:04 PM
Cc: IACC Services (NIH/NIMH)
Subject: [Comment 00037] NOT-MH-08-016

Hello,

My son is 5 years old and was diagnosed on the ASD spectrum at 2 ½ years old. His biggest issues are expressive speech, sensory, diet and social interaction with others. Here is a wish list from our family for support and services that would are needed for our son.

We need to have more social play groups that teach him how to interact with other peers and show appropriate play skills.

We need groups that are run by specialists that offer physical and occupational therapy through music, movement and sensory experiences.

We need dietician run programs within the schools to focus on the sensory and practical needs and behaviors of these children. (My son can’t have gluten and some kids have other specialized diets that directly affect their behaviors)

We need the pediatric community to combine with the DAN doctors to treat Autism as both a neurological and gastrointestinal disease that requires a full body outlook. (if our children have physical pain or reactions from food, environmental toxins, yeast build–up etc. they are not in the proper state to be using the behavioral services and improving.

We need more in home services for ABA, OT, speech and PT to bring what is shown in school into the household for generalization that these children can’t do on there own.

We need year round services that include ABA, OT, PT and Speech and typical peer interaction options without having to jump through hoops with an IEP meeting. ALL CHILDREN REGRESS!!!!

We need video modeling programs to show the skills to the children who are visually focused.

We need in merge an awareness program into the school curriculum to show typical children how and why the ASD children interpret the world around them to avoid the bullying and ignorance when they get older.

We need increased insurance bills that include the DAN doctors and testing for the physical symptoms above and beyond the neurological ones.

We need a new vaccination schedule and prescreening for children to target the ones whose immune systems can’t excrete heavy metals and toxins on their own and can’t handle the overload in their immune system.

We need family support both financially and socially for the parents to avoid the 80%+ divorce rates for ASD parents.

We need typical teachers to be aware of how to deal with the ASD children outside of the special needs classrooms. WE need the typical children to be mentored with an ASD child to make connections and bonds between the two worlds.

These are just a few of my wishes for a better world for my son.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, August 26, 2008 8:15 PM
Cc: IACC Services (NIH/NIMH)
Subject: [Comment 00038] NOT-MH-08-016

As my grandchild is fast approaching puberty, it would be very helpful to have a training seminar of some kind to instruct the main caretaker how to handle the problems associated with this stage.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 27, 2008 12:35 AM
Cc: IACC Services (NIH/NIMH)
Subject: [Comment 00039] RFI identifier, NOT-MH-08-016

Concerning this autism survey –

One of the main concerns I have as a parent of a child on the Autism Spectrum is that many of the school’s certified teachers, aides, and non-certified teaching personnel do not have any training in dealing with special education issues or autism specifically. When I ask in ARD for the aides at least to receive training, I am told it is really none of my concern; their supervising special ed teacher says she supervises their work and trains them on the job....with her being pulled in so many directions, that is simply not enough. I would like to see a mandated amount of classroom hours of training for anyone having to work in classrooms with disabled children. Just because someone is “ seasoned” in working as an aide (the word used by the sped teacher) doesn't mean they know what they are doing!

Thanks.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 27, 2008 12:01 PM
Cc: IACC Services (NIH/NIMH)
Subject: [Comment 00040] NOT-MH-08-016

Please see [redacted personally identifying information] special report at http://www.coachmike.net/special_report.php which highlights the need for the federal government to give fair employment opportunities to people with disabilities including autism.

[redacted personally identifying information]

See what people are saying about Windows Live. Check out featured posts. Check It Out!

From: [redacted personally identifying information]
Sent: August 27, 2008 2:00 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00041] FI identifier, NOT-MH-08-016

Dear NIH,

It is my opinion, as both an attorney and as the mother of a young boy with autism that more funding should be allocated to direct legal services for families who have a dispute with their school districts over their child’s education.

In my own son’s education, I was forced to sue our school district just to secure a very basic education for me. The school district was using outmoded systems which marginalized and excluded children with autism, rather than include and educate them using techniques based on scientifically based research. Moreover, children from underserved communities, such as non– English speaking populations, are often ignored and segregated and families often do not have resources to challenge their children’s educational placements, or the lack of accommodations and services.

Under the Individuals with Disabilities Education Act, children with autism have certain rights, which include the right to a free and appropriate public education. Unfortunately, due to its complexity, failure of state and federal enforcement, and the expense of pursuing the rights granted therein, the legal protections under this federal statute rarely reach the vulnerable children it intends to protect.

Therefore, more funding for direct legal services, law school clinics, and advocacy organizations is absolutely critical.

Please feel free to contact me if you have any questions.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, August 28, 2008 9:05 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00042] On Autism

From my research on neurological illness,of which Autism, is one, there are many things that must be observed. Prenatal care, and education: a woman considering pregnancy should be informed and educated with all recourse’s available, not just the beliefs of government run agencies. Peer to peer would would, and across the board, what ever the finances, there is no excuse for the rise in autism figures as we see in this 21 century. I am speaking preventive medicine for all.

Until a child is observed and tested for sensitivity, not one vaccine should be given. A “cookie cutter” approach to vaccination is dangerous, very dangerous.

Vaccines themselves need an overhaul. There are un necessary ingredients, neurotoxins that are lethal, and no human being should be subjected to these, least of all a 6lb infant. Error on the side of caution, unless there are unlimited tax dollars to fiance autism and other neurological diseases, that could be eliminated largely by diet and education. Children born today do need an instruction booklet, as our planet becomes more polluted, our bodies of water with increasing amount’s of Mercury, which is toxic at 1 billionth of a percent. I factory laden areas, such as New Jersey, the numbers are glaring high in autism fatalities. It does not take rocket science to grasp of what is occurring to our children, further deteriorating the family unit.

Study of the brain/gut connection, Candida, sugar, preservatives, additives, and vaccines, are these more important than the health and well being of our children? I say “ NO” as do many of my friends who are aware of this grave situation.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, August 28, 2008 9:41 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00043] NOT-MH-08-016

Issues of critical importance for persons on the autism spectrum across the lifespan:

  • Vocational training and supports, including support for finding and keeping competitive employment
  • Identifying what kinds of supports are most effective in supporting persons with autism to find and retain skilled employment
  • Providing effective social skills training in educational and on-the-job settings, including research to identify what methods of teaching social skills are most effective for persons on the autism spectrum
  • Respite care for parents
  • Insurance coverage for autism–related occupational and behavioral therapy
  • Eliminating the waiting period for autism Medicaid waivers
  • Supported living services for adults on the autism spectrum
  • Increased access to regional autism resource centers in smaller cities and rural areas

[redacted personally identifying information]
Parent of two young adults on the autism spectrum and leader of a support group for parents of children
and adults on the autism spectrum.

From: [redacted personally identifying information]
Sent: Thursday, August 28, 2008 11:42 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00044] NOT-MH-08-016

Since the basic etiologic issue in autism spectrum disorders (Autism and its milder form, Asperger’s Disorder) is an abnormal rate and sequencing of brain development, research efforts must be focused on elucidating the factors that direct brain growth (turning on, off, coordinating, and modulating development of the brain.) These blueprints for development most likely reside in micro RNA or other RNA factors as yet undiscovered. (The rational for this is given in [redacted personally identifying information], “Understanding the Nature of Autism and Asperger’s Disorder J. Kingsley pub 2006) I firmly believe that futther DNA surveys will not identify the basic “blueprint” or genetic programing abnormality which produces the irregular brain development characteristic of these disorders.

Respectfully submitted

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, August 29, 2008 7:05 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00045] Autism survey

Hello and thank you for your time and interest on such an overwhelming matter.,

My son, [redacted personally identifying information], is 14. As a preschooler he had ABA which I feel was a huge help to him. If ABA was covered by health insurance school systems may not feel so “crunched” for funds. Those who did not have health insurance could be helped by the school system.

As an adolescent [redacted personally identifying information] could have benefited from an aide in the room at school (elementary). He did have an aide in Middle school however, the time was limited to core classes. and they weren't trained for dealing with children with Autism. I had to constantly remind the schools that his autism did not go away because (ex.) he was in gym rather than science.

[redacted personally identifying information] is now in High School and has been involved for two years with a social skills group at school and outside of school. Social skills groups have been very helpful for him because he has difficulty taking what he learns and applying it to the outside world. Another words, school deals with school issues and the outside program deals with life issues such as jobs, girls, anger issues and so on. However, I pay for the Social Skills class outside of school and it is financially difficult to keep doing it.

As for his future, I do worry about how I will afford college for him if he goes because it may take him longer than the average student. He will no longer be on an IEP and will still need educational services to get thru college. Without it he will get discouraged and quit. I am concerned for planning and paying for his future.

These are few things that come to mind quickly. Basically, I feel many of these issues come down to money.

–  I feel health insurance companies need to start helping families.
–  there needs to be more “qualified” professionals helping these kids
–  more financial help is needed

I feel my son is doing well because I have stayed on top of his care. Parents need to be advocates and active with their childs disability.

thank you

[redacted personally identifying information]

From: [redactedpersonally identifying information]
Sent: Friday, August 29, 2008 10:17 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00046] RFI identifier, NOT-MH-08-016 Response to Autism Strategic Plan

Dear Dr. Schwechter:

Thank you for the opportunity to respond to the draft Autism Strategic Plan by the Interagency Autism Coordinating Committee.

Having participated in the early stages of the draft plan, including the Ballston meeting in January, I was surprised by the lack of emphasis on animal and cellular model systems to investigate the biological causes of autism, as well as model systems for evaluating treatments. While mention was made in four places, there was only one brief Objective, on page 20:

“Standardize and validate three model systems (e.g. cellular and⁄or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions by 2012.”

Restricting the goals to three model systems will not even begin to address the many compelling hypotheses about the causes of autism. A large number of candidate genes will need to be evaluated in animal models. Hypotheses about immune dysfunctions, environmental toxins, etc. will require independent model systems. Three will not be anywhere near sufficient to discover and evaluate proposed treatments. Treatments for distinct endophenotypes in autism will require a variety of model systems for preclinical testing.

A simple fix for this serious problem is to change the word “three” to “multiple”, to read “Standardize and validate multiple model systems that replicate…” If a number needs to be stated, then “at least 20 robust model systems by the year 2012” might be appropriate.

NIH and private foundations are right to focus on clinical studies and address immediate needs of families with autistic individuals. However, NIH must be the primary source of funding for basic research to discover the true biological causes of autism(s). Parent advocacy foundations have a much harder time in funding basic research. The mission of NIH is on bench to bedside research, particularly the use of animal and cellular model systems for basic research. Please correct this unfortunate lack of emphasis in the Autism Strategic Plan.

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, August 29, 2008 2:24 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00047] NOT-MH-08-016 Prioities

Prioities:

  1. transitions
  2. employment
  3. housing
  4. guardianship
  5. health and medical services (including dental),
  6. older adults
  7. community inclusion
  8. education services
  9. safety
  10. finances
  11. estate planning

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, August 29, 2008 5:23 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00048] NOT-MH-08-016,

I am responding your inquiry regarding high priority questions and issues for the ASD populations.

My priority is for educational research regarding early intervention methodology, tools schools and providers can use to match needs with learning profiles and projected responses to intervention options; addressing core symptoms for those identified as at risk for autism particularly joint attention, sharing of emotion and affect and methodology from the Developmental philosophy, Relationship Development Intervention, etc. using strong evidence based research is needed.

Research identifying the role of Least Restrictive Environment in young children with autism compared to the need for an individualized one to one intervention and how they complement each other would help address professional and parent questions about how to proceed with these two models. It is difficult to determine what is needed (in the child’s profile, learning characteristics, awareness level, imitation skills) to determine who benefits from peer exposure when so much direct instruction is needed to address those early social-communication skills.

Educational assessment tools that help identify educational needs of this population before age three, three to five, and school age as well as the secondary transitioning students would support improved services. Existing medical diagnostic tools are not appropriate to determine learning needs in an educational setting.

Educational or therapy issues related to decreasing the restricted range of interests of thinking and behavior, as well as obsessive compulsive treatment strategies is also needed. The perfectionistic thinking of some of those with autism and Asperger’s Disorder is often missing from educational or therapeutic resources. Medication options available are often not enough and cognitive strategies are needed that will challenge even those with less than typical IQ performances.

Having direction in the field that applies to competencies and experiences for diagnosticians, whether they are developmental pediatricians, psychiatrists, psychologists, etc. will help address confidence in accuracy of early diagnoses across providers to decrease poor consistency from provider to provider, often delaying opportunities for early intervention.

The need for secondary transition assessment tools, particularly for decision making skills, thinking skills, and problem solving for Asperger’s Disorders would be welcome additions to the meager offerings at this time. In addition, scientifically based research that verifies curriculum content, sequence of skills, and generalization guidelines is sorely needed.

Life span issues regarding adult resources for job supports, living supports, and use of community resources with friends is also needed.

There are not enough financial supports for families living with ASD that need in home services, access to medical evaluations, and supports for after school and week-end care, including crisis care options.

Thanks for this opportunity to provide initial feedback to your committee.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Saturday, August 30, 2008 1:47 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00049] Priorties

WHAT services are in place for kids who ‘Age Out of the system?’

WHY do parents learn ‘too late’ that they need to investigate and apply for Group Home environments for children who ‘age out?’

WHY aren’t parents made aware that in order to assure a placement that they must apply ‘years’ in advance?

WHY are there SO FEW supportive group home environments in place for these adults?

WHY are there so FEW resources for residential schooling options for Autistic Children (Aspergers) who have behavior problems associated with Autism? . . .

WHY aren’t these schooling options, in public or private schools, geared to ‘different’ behavior problems? i.e. impulse control or anger management, etc.? [Honestly, I KNOW the answer. I teach an elective.

In my opinion, this is [redacted inflammatory language] and doesn’t comply with the spirit of the law.

WHY do school systems ‘ assume′ that these cryptic IEPs for children with Autism are relevant, understandable, and easily implemented in a ‘regular’ class environment?

WHY can’t school systems who are supposedly ’trained’ in working with children with Autism TAKE THE TIME to individually talk to the teachers of these kids to give them strategies BEFORE the child is enrolled in the class. These students have UNIQUE needs to feel they belong. After all, a student who is Autistic on the higher end of the spectrum ALREADY knows he is different! He already is apprehensive about being in a new, unfamiliar environment. WHY are school systems so ‘scared’ about “ identifying students” for legal protection that they IGNORE the value of a teacher KNOWING about how they can successfully integrate this great kid into their class?

When you receive an IEP (not involving Autistic children) that says cryptic [redacted inflammatory language] like:

Needs a Word Processor for written Assignment Needs a calculator Needs to be placed at the front of the class Needs extra time for tests Requires (in High School, no less) a DAILY behavior report. (Aside: GREAT when you have 5 classes with 22-29 students, you REALLY NEED THIS as an addition to your attempt to provide meaningful instruction).
May need test to be administered orally
Needs copy of notes given by teacher (sometimes in 16 point)

Copy of Texts available to have at home (when you may only have a classroom set)

When frustrated, should be taken outside of the classroom and asked ‘why’ he⁄she felt frustrated. Work to find ways to ‘assist’ the child in accepting rules and regulations of the classroom environment in a positive way. (Yes, this student’s ‘special situation’ should take precedent over the progress of the ‘whole.’) If not, you will be reprimanded by Administration for not following the IEP.

Needs all handouts in 16 point
Needs Large Print version of text (Contact Assn. of Blind) BELIEVE ME, these are just a FEW IEP accommodations I get each year. Generally 30 or more.

Want more info?

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Saturday, August 30, 2008 10:38 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00050] NOT-MH-08-016

Research is desperately needed to address the aggravating medical problems of those with autism, and on developing resources that can be readily “exported” to schools and agencies with little experience in management, particularly behavioral management and educational management.

Severe and low–functioning autism is under–addressed by all levels with most programming and support directed at the ‘easier’ population. Although nothing is anticipated from any research initiatives in terms of supports and services for this group it would at least be useful to document the stresses, lack of supports, and consequent family disruption, career dislocation and resultant under–productivity that results form the failure of services to provide support.

From: [redacted personally identifying information]
Sent: Saturday, August 30, 2008 9:53 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00051] NOT-MH-08-016

As a pediatrcian in the largest private pediatric group in Western Massachusetts, and the second largest in the state, I treat many children who with autistic spectrum disorders.

With the increased awareness of these disorders, and the use of screening tools like the M–CHAT, we are diagnosing children at a younger age, and getting services for these kids up to the age of three years is getting easier. However, after the age of three, when federally mandated early intervention services cease, there is a great degree of difficulty getting therapy for these children through the public schools. There is a lack of applied behavioral analysis trained therapists at all ages. And there is a serious lack of mental health providers who are trained to help these children and their families.

There is a local grass roots community agency that provides support and resources for children with autism and their families, but I was dismayed to find that they were offfering seminars that spread the misguided assertions that autism was caused by the MMR vaccine and thimerosol. There needs to be more education, especially for agencies like this, and for families, that counters these myths that are so prevalent in the media.

At the same time, families, and physicians, are left on their own in sorting through the wide range of information and services having to do with complementary and alternative (CAM) therapies for autism. Some parents have sworn that dietary changes, and treatment of food allergies through non traditional blood tests (usually through food avoidance) has helped their children's symptoms; I have witnessed some of these beneficial changes myself. There should be better ways of keeping up with new treatments- medical, behavioral, nutritional, and so on.

For the children with more serious degrees of autism, especially combined with significant cognitive delays, there are fewer resources for children and their families locally and even regionally: The Ladders program, for example, at Mass. General Hospital, which was suggested as a regional resource, has apparently ceased to exist.

Despite these problems, I have enjoyed working with children with ASD, and their families, and have seen the significant progress many of these children make, with the programs and resources that are out there.

Thank you for the opportunity to provide my input.

– – [redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Sunday, August 31, 2008 10:10 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00052] NOT-MH-08-016

To Whomever It May Concern:

Since greater than 75% of untreated children with an autism spectrum diagnosis (ASD) diagnosis have, upon screening by urine porphyrin profile analysis (UPPA; a validated indicator test for mercury poisoning), been found to be mercury poisoned to some degree, ALL children with a diagnosis of any ASD should be screened by a validated UPPA test (LabCorp, Laboratoire Phillipe Auguste, or Metametrix) for evidence of mercury poisoning and/or mercury and/or other heavy-metal poisoning.

Supporting References:

  1. Nataf R, et al. Poryphyrinuria in childhood autistic disorder: implications for environmental toxicity.Toxicol Appl Pharmacol 2006; 214: 99–108.
  2. Geier DA, Geier MR. A prospective assessment of porphyrins in autistic disorders: a potential marker for heavy metal exposure Neurotox Res 2006; 10:57–64.
  3. Geier DA, Geier MR. A prospective study of mercurytoxicity biomarkers in autistic spectrum disorders.
  4. J Toxicol Environ Health A. 2007 Oct; 70(20):1723–1730.
  5. Austin DW, Shandley K. An Investigation of Porphyrinuria in Australian Children with Autism. J Toxicology and Environmental Health, Part A 2008; 71: 1349–1351.

Other areas where the screening of those with an ASD diagnosis should be considered are:

  1. Hormone abnormalities,
  2. Gastrointestinal co-morbidities, and
  3. Transsulfuration biomarkers.

Hopefully, if these scrrenings were routinely performed, doctors might have a better understanding of how to treat each screened child in a manner that would, to the extent possible, assist in the healing of that child.

Respectfully,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Sunday, August 31, 2008 11:34 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00053] RFI identifier, NOT-MH-08-016

Hi, I am [redacted personally identifying information]. I have an 8 yr.old son, [redacted personally identifying information]. He has ADHD⁄Aspergers syndrome. The thing that we have been having the most problems with is getting him an advocate to come down to help with IEP’ s. This time we were able to get one thru teleconferencing. And it is very hard to get the schools to get it threw their heads how bad he needs help with social skills. They say they understand, but with the way they talk about it they really don’t. And my son and I’m sure others kids suffer from it. Would help if they could get someone to talk to the employees at all the schools to get them to understand about it. And to give the kids in schools information that will help the kids with Autism are going thru. Thank You

[redacted personally identifying information]

http://poetry.com/contest/poetrycontest.asp?suite=A93801&sak=P7383604

From: [redacted personally identifying information]
Sent: Monday, September 01, 2008 9:40 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00054] NOT-MH-08-016

Our daughter is 30 years old. She was not diagnosed as PDD–NOS until she was 16 years old, so therefore, the educational system had already failed her completely. It is interesting to note that what I had tried to ask the educational system to do with her is exactly what the systems are now finding should have been done. [redacted personally identifying information] has never been a person that could be "taught" one on one as all educators insisted had to be the way. She has always learned peripherally and along with her “ steel trap” memory, could have been educated much better. However, that is all water under the bridge; we are now battling a much larger battle in her life.

[redacted personally identifying information] is on the MR Waiver in the state of Iowa. She has been diagnosed with an IQ of approximately 52. She has been in a sheltered workshop since graduating from high school at the age of 20. She is one of TENCO’s hardest and reliable worker. However, because she has been taught strong work ethics, she is capable of making more than half of the minimum wage, so therefore, there is no vocational rehabilitation funding available for her and our county has to pay for her days at TENCO 100% out of their pocket. With all the drug and alcohol rehab that is being spent from the mental health budget at our county level, those people like my daughter are becoming more and more victims of cuts in services. In fact, the county has been threatening to cut [redacted personally identifying information] from 5 days a week down to 2 or 3 days a week. This will be absolutely devastating to [redacted personally identifying information]. This is her JOB and she treats it as such. She has made a lot of progress by being at Tenco with regard to her verbal outbursts and ability to stay on task.

Also, the funding for her HCBS services is being cut and they want anything that a worker does with [redacted personally identifying information] to be billed under respite services. I do NOT agree with this. They say that the worker cannot sit down at the kitchen table and work with making correct money change and telling time on a non digital clock because it is considered academic and therefore if I want them to do this it was to be considered respite. I am sorry, but I feel this is the type of issues that would make her more independent. They also feel that for the worker to take [redacted personally identifying information] swimming in a non-handicapped environment is also respite and not a social skill issue. [redacted personally identifying information] has always been like a sponge, soaking up her environment and become like it. Therefore, we have always treated her as a "normal" person and never kept her out of the public’ s eye. This has made her a very socialable person and she is capable of carrying on appropriate conversations with any age group. The CPI thinks she should only be with her handicapped peers to socialize.

I have omitted the part that [redacted personally identifying information] also still lives at home with us, her parents. We feel that there is definitely no appropriate housing in Fairfield because she would need 24 hour supervision because of medical and mental issues. Therefore, I feel that what is spent on her is less than would be spent if she were living elsewhere.

At the age of 18 [redacted personally identifying information] had both of her hip joints totally replaced (at the same time). She has been very fortunate in the fact that they are as good as they day they were put in. She is also troubled with UTI’s on a regular basis, inverse psoriasis and because of a very high narrow pallet and extremely large tongue has dental issues. When the Medicare Part D came into effect for [redacted personally identifying information], it certainly was a real blow to us and the government. Since [redacted personally identifying information] is “retarded” and still living at home, her father’s employer’s insurance covered her with BCBS. Therefore, they paid first and Medicare and Medicaid came in after that to pay any differences. However, the Medicare Part D would not allow her to get drugs for the $1.00 and $3.00 price that she was entitled to since she had the BCBS. They insisted that she had to pay the co–payments of $10.00, $20.00 or $30.00 depending on the drug. I asked why they couldn't pick up the difference between our co pays and the amount she was entitled to pay. There immediate reply was that she was not allowed to have 2 drug coverages. We were not asking that we be allowed to make money off the situation, just that she should not have to pay more than the $1.00 and $3.00. So therefore, we had to drop her from the BCBS coverage and so now the government has to pay 100% for all her medical needs. Does that seem sensible to you?

It is hard for me to put into words on paper how I feel about the system that is in place; and how it has cared for [redacted personally identifying information]. Hopefully this emails will give you some idea as to how we feel the system is working for our daughter.

Thank you.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, September 02, 2008 6:51 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00055] RFI NOT-MH-08-016

As the parents of a child with autism, we would like to see more supports and services for adults with autism and severe behavior issues. Since many of the children with moderate and severe autism will not be able to live independently, there must be services and residential options for adults. The current system is not ready for the tsunami of children with autism whom will be reaching adulthood in the not too distant future.

Also, more research in to drug interventions to ameliorate behavioral symptoms of autism would be very helpful.

From: [redacted personally identifying information]
Sent: Tuesday, September 02, 2008 9:57 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00056] NOT-MH-08-016

Dear NIH,

We are a nonprofit all volunteer organization that specializes with the special needs community. The Pocono Equestrian Center has in the past and currently had an extremely high success rate with our autistic community. Our services to the community involve: Therapeutic Riding, Animal Assisted Therapy, Reading Group, Youth Group, Transitions into the Community, and Emotional⁄Behavioral Support programming. The statistics in Pennsylvania of Autistic individuals is overwhelming. Our therapeutic center would like to have a relationship with NIH to expand services and help more people and families with ASD…

Our therapeutic riding program as well as the others are unique compared to other centers. We try to involve the entire family as much as possible. (As long as it assists in the individuals therapy) The Pocono Equestrian Center would like to add licensed professionals to our staff so our center becomes the FIRST COMPLETE therapy center using horses under one roof. Think about it..Parents won’t have to travel another 30 minutes to go to Occupational Therapy after Physical Therapy. It will be all under one roof.

Please do understand we are new to the federal scene so please do allow us time to get you the information you need if you are interested in funding our services.

Thank you

[redacted personally identifying information]

All Proceeds benefit The Pocono Equestrian Center, which is registered with the PA Bureau of Charitable Organizations, is a 501(c)(3) non-profit organization. The official registration and financial information of The Pocono Equestrian Center may be obtained from the Pennsylvania Department of State by calling toll free, within Pennsylvania, [redacted personally identifying information]

The information contained in this message may be CONFIDENTIAL and is for the intended addressee only. Any unauthorized use, dissemination of the information, or copying of this message is prohibited. If you are not the intended addressee, please notify the sender immediately and delete this message.

From: [redacted personally identifying information]
Sent: Wednesday, September 03, 2008 12:10 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00057] NOT-MH-08-016

As an educator and provider of child care services to children on the autism spectrum, I believe further research is imperative on two points:

  1. The impact of assessing children on the spectrum according to education standards developed for the regular education population. This practice, which focuses heavily on linguistic skills, fails to provide teachers with useful information; creates despair and hopelessness among parents who in many cases are presented with scores for their children assessed as “ below basic” across the board; and contributes to a sense of “abilism” among society, which is a disservice to children living with autism.
  2. Further research to explore and potentially support the use and effectiveness of social stories for working with children on the spectrum.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, September 02, 2008 8:08 PM
To: Schwechter, Azik (NIH/NIMH) [C]
Subject: [Comment 00058] FW: NOT-MH-08-016

Hi

As the parent of a 13 year old with autism, I would submit the following as issues of great importance.

First and foremost, safety. How to keep a child safe with in a home setting. Many children with autism bolt or wander. This is often accompanied by an aggressive behavior. How do you keep the child and caregiver safe? How do you set up a home so that bolting can be prevented? Often, these behaviors are sporadic. As the child grows larger, it is all but impossible to single handedly keep them contained in the safety of the house. Still, the behaviors are not frequent enough to warrant placement outside the home. Bolting can mean running down a driveway into a street without notice of any danger.

Secondly, the autistic population is growing older. How do you deal with the issues that puberty presents.

Lastly and again along the same theme, behavioral strategies for older, larger kids.

Thanks you.

[redacted personally identifying information]

Get the MapQuest Toolbar. Directions, Traffic, Gas Prices & More!

From: [redacted personally identifying information]
Sent: Wednesday, September 03, 2008 2:42 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00059] NOT-MH-08-016
Attachments: NOT-NIH-08-016 request for information.doc

Please accept this attachment as my response to the request for information as per identifier NOT-MH-08-01

[redacted personally identifying information]

The following items express what I deem as high priority issues for developing adequate supports for individuals with autism spectrum disorders:

  • Despite the existence of an entity defining the core knowledge, skills and abilities necessary for practicing behavior analysis (Behavior Analyst Certification Board) and subsequent voluntary certification, many public school districts and other agencies providing educational services to students with autism still fail to endorse this certification. How do we ensure that competent and highly qualified professionals are delivering appropriate educational services to learners with ASD?
  • With continued efforts toward full inclusion of learners with ASD, there exists a strong need for mechanisms to support these individuals in a manner that ensures their continued educational growth consistent with recognized outcomes. However, many school districts do not have adequate or appropriate supports in place to ensure these outcomes, and fall back on the legal stance of meeting a “minimum level of educational progress”.
  • Further, when public schools cannot support learners with ASD, they turn to private facilities specializing in educating them. However, to my knowledge, no policies regarding the qualifications of individuals working within these institutions exist, nor are there any accountability mechanisms in place to ensure that these students are actually receiving quality educations. Although federal legislation has given birth to alternate assessments for special needs learners, are these assessments adequate to meet these needs on a statewide level?
  • New Jersey has an enormous waiting list for services geared towards adults with ASD. There have been many discussions about providing support services in these clients’ homes and in the community where they are aimed to transition. However, we do not have a series of systematic mechanisms to provide competent and evidence-based supports to these individuals.
  • The age of filing for guardianship is currently 18. The legal and administrative processes can take from 3–6 months in some cases. During this period, clients of legal age can encounter any number of difficulties. Clearly, a need exists to re-examine these laws in the best interest of these individuals.

[redacted personally identifying information]
September 3, 2008

From: [redacted personally identifying information]
Sent: Thursday, September 04, 2008 8:16 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00060] NOT-MH-08-016

Here's my input on the"Request for Information (RFI): Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD)":

I’m studying to be a special education teacher whose focus will be working with kids with ASDs and a really obvious, but seriously neglected, if never mentioned previously, way to help people with autism spectrum disorders (and those who are blind⁄visually impaired, too, as a bonus) would be to research, fund, and act on this suggestion: like a sign language interpreter would allow people who are deaf to communicate with those who are hearing, why not create a “ body language⁄facial expression” interpreter positions to interpret the nonverbal cues on behalf of those 1–2 million Americans who are living with autism now as children, teens, and adults who also have theory of the mind deficits? This is key since the nonverbal deficits found in autism impact life in many ways (safety issues, communication misunderstandings, emergency situations) and that something like 80% of all communication is nonverbal so people with autism, if they are lucky, are only getting 20% of the message. People with autism should have this support in place if making life better for those living with it is our nation’ s goal.

Knowing that groups like Autism Speaks have tons of money available to them, and the power this group has, they could fund this perhaps. Or the government could use the funds designated for the Combating Autism Act of 2006 for this urgent support to be created.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 05, 2008 9:48 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00061] NOT-MH-08-016

To Whom It May Concern:

My name is [redacted personally identifying information] and I am an adult on the higher end of the autism spectrum in his mid twenties. I am writing this message in response to a call for input about high priority issues related to autism. I would like to suggest that NIH consider funding a long term, longitudinal study, about ASDs and the aging process. To my knowledge very little work has been done in this field, primarily because much of the resources are directed towards studying children. Yet, as we know, ASDs do not magically disappear when one hits the age of majority and autistic or neurotypical (NT) all people age and decline. There are some valuable questions that I believe need to be answered: Is the life span of an autistic person longer or shorter than NTs? Do autistic people have a higher risk of senile dementia than their NT counterparts? Do the issues that autistic people have with spacial and hand eye coordination lead to an increased level of accidents as they age? Are elderly autistic adults able to have a high quality of life despite lacking social connections or having a difficult time making them? Do their support systems need to change as they grow older, and if so, how? These do not necessarily have to be the the only questions such a study could ask but could be a start.

I realize many of these concerns are the concerns of a high functioning person, in fact I doubt that a low functioning person or their family would be concerned about issues related to retirement. However, I do have these disabilities and feel that I would be entering uncharted waters as I go down this inevitable path. Likewise, I believe that there could be some equally valid questions that could be asked about my low functioning cousins: their care takers will also age, have their own families they also need to take care of, and eventually pass away, how are they able to cope with such a radical change in their lives especially if they are at an advanced age? Also, what is their quality of life as they advance in years?

Thank you for taking the time to consider my concerns. The fact is that aging process of autistic persons is a giant mystery and it would be extremely advantageous for the autism community to have some answers in this regard so that all persons can have the quality of life they deserve, and enjoy the fruits of their life, as they gain in years and not have to suffer before death.

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 05, 2008 1:36 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00062] NOT-MH-08-016

As an adult with an ASD, I am very interested in the work you are doing, and very disappointed by your group’s services subcommitee’s request for comments:

‘The first request comes from the group’s services subcommittee, which wants to know what educators, service providers and families “consider to be high–priority issues and concerns surrounding services and supports for children, youth and adults with autism spectrum disorder.” ’

From the perspective of a person with an ASD, the highest–priority issue and concern surrounding services and supports is my need for the assumption of competence. Your group’s request, by soliciting commentary from everyone except the people who actually have an ASD, reeks of the assumption of incompetence.

While I am quite articulate and literate, I regularly interact with autistic adults who are much less so. Nevertheless, I have found even people, who have grave difficulty with punctuation and grammar, can make their needs and values known. Even people who lack verbal or written communication can make their likes and dislikes known.

One of the most salient points of PDDs is their pervasiveness. That pervasiveness has a profound impact on my boundaries, values and needs. I regularly have my boundaries and values dismissed and invalidated, which invalidates me as a human being. I often find the values of educators, service providers and families alien and perverse. Why would you seek their viewpoints out to impose alien and perverse values upon me?

While I don’t think you should ignore the needs and values of educators, service providers and families, neither do I think you should ignore the needs and values of autistics ourselves.

Cheers,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 05, 2008 2:13 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00063] NOT-MH-08-016

registration for conference call on Sept. 15 at 9:30 AM

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 05, 2008 5:21 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00064] NOT-MH-08-016

I would like to provide input for your RFI. I am a Navy wife and mother of three beautiful children. My husband is active duty military [redacted personally identifying information] in the United States Navy and we are stationed at [redacted personally identifying information], California.

In May 2007, I took my young daughter through Early Intervention services through [redacted personally identifying information] Regional Center and discovered that 2 of my 3 children were probably on the spectrum of Autism. The last year and a half have been nothing short of a fight for our family… for our children.

We took our diagnosis to the local school district and were denied services for our son despite more than 15 pages of recommendations and accommodations for our child from the diagnosing doctor. The school told us that Asperger Disorder was not a qualifying condition for Special Education. After 8 months of disagreements with the district and a host of educational, privacy and civil rights law violations, we hired an attorney. Since March 2008, my husband and I have almost emptied our retirement savings (more than $60,000) in a legal fight to protect our son’s educational rights and to hold a school district accountable.

We can’t afford to pay for all of the therapies and treatments recommended for our son… and local school districts admittedly know very little about ASD’s, so children in this region of the state are at a clear disadvantage.

We continue to fight for both of our kids with educators who are not highly trained and who know very little about Autism Spectrum Disorders.

[redacted personally identifying information] California is behind the rest of the country when it comes to Autism education, service implementation and support systems for parents of children on the spectrum.

Respectfull submitted,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Monday, September 08, 2008 12:52 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00065] NOT-MH-08-016: Nevada Autism Training and Technical Assistance Center response to IACC
Attachments: IACC Services.doc

To whom it may concern:

I have attached the Nevada Autism Training and Technical Assistance Center’s response to the IACC RFI. Our office eagerly awaits the publication of the IACC’s work in November.

Regards,

[redacted personally identifying information]
Autism Training and Technical Assistance Center
[redacted personally identifying information]

Priorities for the IACC Services Subcommittee for ASD

  1. Early identification, diagnosis and treatment of ASD
    1. Early Intervention Service systems should train multidisciplinary teams (MDT) to work with families to diagnose ASDs. Currently many children with ASD are made eligible under the generic Developmental Delay category. This serves to mask the true incidence of ASDs in the birth to three population, confuses many parents who have concerns about the possibility their child has an ASD, and gives an impression that Early Interventionist may not be qualified to serve children with ASD. When MDTs do make children eligible with a finding of ASD, families may need to seek additional evaluation outside the Early Intervention Service system in order to receive a diagnosis of ASD. A diagnosis is often needed to access other services for a child with ASD. Communities typically have too few professional services available to diagnose ASDs and families often wait many months or years to obtain a diagnosis. Early Intervention MDTs are often in the best position to provide a diagnosis of ASD in as much as early intervention professionals have extended periods of time to observe the child across familiar and unfamiliar people and settings. An evaluation leading to a finding of ASD eligibility is not significantly different from an evaluation leading to a diagnosis of ASD. Most MDTs have professionals whose scope of practice allows for diagnosis of ASDs. Alternatively, the findings from an MDT evaluation can be communicated a child’s primary care physician.
    2. Coordination of services across Early Intervention and Early Childhood Special Education programs should allow for continuity of services up to age six. Transitions from Early Intervention Services to Early Childhood Special Education services often lead to discontinuity of services that are difficult for the child with ASD and his family. Also, the two service delivery systems are often competing for the same small pool of professionals who have the training and experience to serve children and families living with ASD. Families and systems should be better served in communities where services coordinated for children birth to six years of age.
  2. Comprehensive service delivery models that incorporate a number approaches to the treatment of ASD in young children birth to age six should be developed and researched. Currently, families typically build their own service delivery system over time without any coordination across the various service delivery systems with whom they interact. A comprehensive approach would bring together current best practices of 1 to 1 instruction, small group and classroom models of instruction. There should be a mix of skills training, relationship–based training, sensory integration/processing treatment methods and pharmacological/ nutritional and dietary approaches to the management of common ASD medical symptoms. Parent training to assist families in understanding characteristics of ASD and Positive Behavior Supports to address behavior challenges common in ASD need to be part of a comprehensive system of services to children and families living with ASD.
From: [redacted personally identifying information]
Sent: Tuesday, September 09, 2008 4:16 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00066] NOT-MH-08-016
Attachments: NOT-MH-08-016.pdf

Attached is my one-page submission for the IACC Services Plan.

Sincerely,

[redacted personally identifying information]

Funding life–time supports and services for developmentally disabled people
[redacted personally indentifying information]

I have been struggling for 25 years now with the post–age–21 problems of my son who will be 46 years old on September 18. The burden and grief of autism (or PDD) only gets worse.

SUGGESTION: Long–term care insurance should be required for every child born in the USA, just the way automobile insurance is required for every car and driver. Insurance companies do know how to figure out how many uninsured drivers are out there, and they could do the same for children whose parents might evade a mandatory insurance law. Insurance is the American alternative to socialism and communism – and Social Security also should be privatized, for the same reason no one would want automobile insurance to be provided by the federal government. [redacted personally indentifying information] first proposed this 8 years ago on [redacted personally indentifying information].

Estate planners appear at every conference on autism, and I have been approached by people proposing that I join a group of families who pool resources for life–long care. I do not have sufficient assets to be able to join such a group. Autism has severely hindered my employment opportunities despite my education and long experience. My son is reliant upon the current public system, which stinks.

WHAT WE ARE DEALING WITH NOW: My son lives in a group home, but he will no doubt end up in prison after I am gone. He has served several prison sentences already – for unauthorized use of an automobile, assault and battery with a dangerous weapon (the car), and most recently for open and gross lewdness (at the upscale [redacted personally indentifying information] Hotel in [redacted personally indentifying information], where he went to take a shower at the swimming pool).

What happened? The director of the group home restricted him to the house (a locked–door residence) on suspicion that he was smoking inside the house. So, my son packed clothes and his medications for a 2–day vacation from the house. It's summertime. How horrible to be restricted to a grubby group home. He had been reading a library book about John Kennedy, and said, “I just had to go see [redacted personally indentifying information]” He planned to stay at the Lutheran Church homeless shelter in [redacted personally indentifying information], “But they don’t have showers there.”

My son is high-functioning. We thought he had completely recovered from the diagnosis of “mild” cerebral palsy we were given when he was 21 months of age. He started going downhill during his teens, and missed graduating from high school by just a few months.

He should be able to get a GED, and he certainly is capable of doing useful work, but the group home does nothing to help him achieve any meaningful goals, and I am despised for trying to make suggestions. I have much more to say, but am at the end of my one–page submission…

From: [redacted personally identifying information]
Sent: Tuesday, September 09, 2008 12:00 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00067] FW: RFI-IACC
Attachments: Interagency Autism-Members Responses (3)rev.docx; Interagency Autism-Members Responses (3)rev.pdf

From: [redacted personally identifying information]
Sent: Monday, September 08, 2008 8:29 PM
To: 'iaccservices@mail.nih.gov'
Cc: [redacted personally identifying information]
Subject: RFI-IACC

Thank you so much for the opportunity for our members to provide input for consideration. We have attached members’ responses in two different formats. Please feel free to contact us if you need additional information. We are also committed to providing supports with individuals with ASD, specifically for individuals with Aspergers and PDD, nos. Again, thank you for this opportunity.

[redacted personally identifying information]
The Coffeehouse Center of Bucks County
[redacted personally identifying information]

RFI- Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD) 8-27-08

The Coffeehouse Center of Bucks County is a new social skills program started for individuals diagnosed with Aspergers Disorder/Pervasive Developmental Disorder. There are twenty one members, 13 males and 8 females. Members of the Coffeehouse Center are in some area of transitioning- school to work, school to college, school to living on own, etc. The ages of the member are between 18 and 26 years of age. Eleven members of the Coffeehouse were present when staff posed the request for information from the Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for ASD.

Members of the Coffeehouse recommendations include but are not limited to:

  • Customize and Individualize Plans for each person.
  • Enhance and build on strengths and not just what has worked in the past for students with Intellectual Developmental Disabilities (IDD).
  • Provide more time in school for test taking and learning– don’t just rush through concepts.
  • Provide more one to one individual attention through development of student peer mentorship program.
  • Continue to include school services until the age of 21 years.
  • Expand insurance eligibility for young adults even if they are not attending college.
  • Make individuals and families aware of services and supports for individuals diagnosed with Aspergers D/O, PDD, NOS. Make individuals and families aware of all options available.
  • Increase supports for individuals with ASD going to college.
  • Provide increased supports and services for job readiness.
  • Include learning the fundamentals of day to day financial management as part of transitioning from high school e.g., banking skills, how to transfer money, etc…
From: [redacted personally identifying information]
Sent: Tuesday, September 09, 2008 3:07 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00068] High Priority issues facing individuals with Autism

There are many issues that face individuals with Autism but I feel the two most pressing issues that need immediate attention are listed below.

  • Lack of adolescent care facilities. In San Diego and Imperial County many families are struggling to care for their adolescent children. Adolescence is a struggle for most normally developing children but for children with Autism it can be devastating. In seems to escalate severe behavioral issues to a point that parents are unable to safely care for their children at home. I recently went through this with my own son and found out that immediate support is not there. There should be local crisis centers to assist for the short term and transition programs in place to find appropriate residential care facilities once out of the crisis center. Funding for these residential facilities should be based on the child’s needs and be staffed with a trained team that can deal with difficult behavioral issues.
  • More quality transition programs for individuals with Autism. High schools and Non Public Agencies should have systems in place to transition individuals with Autism into adult day programs. There needs to be more quality adult day programs that service children with Autism.

Please feel free to call me if you have any questions.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, September 09, 20083:43 PM
To: IACC Services (NIH/NIMH); IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00069] RFIs: Draft Strategic Plan for ASD (NOT-MH-08-021 ) & Priorities (NOT-MH-08-016)

Dear Interagency Autism Coordinating Committee:

I am pleased to provide the following feedback based on your RFIs (NOT–MH–08–021 & NOT–MH–08–016).

A few years ago, my son had daily ADHD incidents and dyslexia. At first, we followed the officially accepted treatments. The results were disappointing; however, when I found alternative treatments that use the same techniques [redacted personally identifying information] used in [redacted personally identifying information] profession to remove capacity bottlenecks in large computers, [redacted personally identifying information] achieved breakthrough results for those conditions. His last ADHD incident was nearly two years ago. Today, we have a very different, normal child.

Intrigued by these experiences and the lack of interest by officials and scientists, [redacted personally identifying information] began [redacted personally identifying information] private research initiative. An initial finding was that there are many indicators of good to breakthrough treatment results (particularly for dyslexia). Strangely enough, this doesn’t appear to be seen within the scientific community. It leads to the following questions: (A) Why is this not being noticed? (B) Why doesn’t desperately–needed research get off the ground? As I hope to make clear below, the answers to these questions are highly relevant to ASD.

For somebody familiar with capacity management, here is one issue that relates to the phenomenon of capacity bottlenecks: Whenever an architect designs a complex system such as a new airport terminal, a skyscraper, or computer, there must be a lot of attention paid to avoiding capacity bottlenecks. Otherwise the system may/will not work properly. We typically experience the consequences of a bottleneck in a traffic jam, such as where three lanes reduce to two. The consequence is a queue. Strangely enough, when it comes to what some consider to be the most complex system we know of (the brain), this phenomenon doesn’t appear to get attention.

For example, at the International Meeting for Autism Research (IMFAR 2008) I attended, I did not come across a single remark suggesting capacity bottlenecks had been considered. Moreover, capacity management techniques are well known. Yet to this day, I haven’t come across any references suggesting the consideration of capacity management techniques for treating mental disorders. More information is available from the paper “Hypothesis: Capacity bottlenecks cause mental conditions and disorders” [1]. With this, a first answer for question (A) emerges: There is an obvious knowledge, experience and research gap of critical importance.

In addition to the capacity bottleneck hypothesis, [redacted personally identifying information] research initiative involves an information management model. The model outlines – in theory and based on fundamental architectural criteria as seen in the brain – how, at the neuron level, information management could happen inside the brain. By adding bottlenecks to it, the model also explains how bottlenecks in different locations lead to different symptoms – symptoms that are associated with dyslexia, ADHD, autism, etc. Based on this [redacted personally identifying information] proposing how, in theory, certain autism symptoms could develop at the neuron level [2]. [redacted personally identifying information] author [redacted personally indentifying information] is a specialist in autism.

Regarding the relevance of the model, I would like to note that it is developed and published to a level of detail that it can be programmed. In a next step, its relevance needs to be confirmed. Then simulations must be done – for example, simulating autism symptoms. The model has been presented to scientists with various backgrounds in brain research. So far, nobody has pointed to any reasons why the model would not provide a reasonable explanation as to how the brain processes information and how symptoms develop.

The immediate challenges are to get [redacted personally identifying information] published, funding approved and research started. The obstacles, however, seem insurmountable. But that is no surprise; it is common for anything considerably different from the general line of thinking. In this case, the capacity bottleneck theory and the model address the brain as a single, complex dynamic system. The approach also assumes that in a complex dynamic system, there may be no exact answers. On the other hand, brain research is highly fragmented, and it appears there is a strong focus on finding exact answers. As a consequence, the model and the capacity bottleneck theory don’t fit into a research discipline. Yet another major obstacle is procedural requirements, whether for research funding or acceptance for publication.

Of course, [redacted personally identifying information] biased on this topic, and it is only a theory at this time. But is it that simple? The fact is that at IMFAR2008, some 750 oral and poster presentations took place. Moreover, 15,000 abstracts are submitted each year to the annual conferences of the Society of Neuroscience. This gives an indication of the number of research projects done each year (which must be much higher). Despite this enormous number of projects, breakthrough understandings of the brain and of autism have not been achieved. This alone gives reason to argue that the breakthroughs may come from unexpected places, and that breakthroughs may look extremely different from where research is focused today.

Moreover, I see that there is mention of the biological basis of ASD in the strategy paper. But what about the information management basis of ASD? This by itself is an enormous area for causing all sorts of abnormalities. Today, this area seems to be too challenging to address. I disagree. Ref. [2] [redacted pending information].

The main point I hoped to make through the examples above is this: There is a realistic possibility that the breakthroughs will come from unexpected places and will not fit into today’s thinking. In today’s environment, however, extremely few people can be expected to go through the enormous challenge of overcoming what appear to them as insurmountable obstacles. Consequently, the new research strategy should make absolutely sure obstacles that prevent breakthroughs from taking place are removed.

With deeply embedded procedures, protocols, working practices, etc., this is no easy task. The straight–forward solution would be to extend the existing strategy to contain a space specifically for innovative and even radically different proposals. Ideally, the only thing that matters in this space should be reasonable indicators of breakthrough potential (with or without scientific background). As long as health risks from proposed treatments are equal to or lower than those from existing treatments, any other requirements should be low priority. What is also needed is proactive support. This means that one top priority should be on funding and providing supporting structures (inclusive mentoring) for such proposals. Why not make one–third of the budget available for this purpose?

Most importantly, as a father who has experienced firsthand how a breakthrough treatment made a dramatic difference in our family, I urgently appeal to the IACC to support and ensure the creation of an environment that enables breakthroughs to surface and become available as soon as possible. Of course, I’d be happy to answer any questions and provide additional information.

Kind regards,

[redacted personally identifying information]

References

[1] E. Oetringer and M. Fitzgerald: Hypothesis: Capacity bottlenecks cause mental conditions and disorders. Bioscience Hypotheses, doi:10.1016/j.bihy.2008.02.002

[2] [redacted pending information] Submitted

From: [redacted personally identifying information]
Sent: Tuesday, September 09, 2008 6:42 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00070] NOT-MH-08-016 IACC services subcommittee RFI

Dear people,

below are a few points I would like considered in by the services subcommittee.

  1. I would like to see a greater emphasis on services for adults and older adults with autism. I feel this is an under-represented area, especially given that most people will spend the majority of their lives as adults. Further, by the time research results come back, many of the children of today will be at or nearing adulthood. Lastly, it is highly likely that the majority of people with autism are adults, although unidentified or misidentified.
  2. I would like to see efforts on educational programs for young children for whom ABA is not effective. At least ½ do not meet the criteria for “best outcomes”, and it is critical to (a) determine the best approaches for them and (b) identify quickly which children should be treated under a different program.
  3. While related to the above statement, it is important to determine outcome measures for success other than strictly intelligence. Programs such as ABA may be the best for children who do not show the dramatic gains that are observed in some others. Just because they don’t exhibit those gains doesn't mean that an intensive program with 1:1 is not the best or most appropriate for them.
  4. The previous roadmap discussed insurance to help cover autism therapies. There has been much effort on the state–by–state level to improve autism coverage by insurance. As noted in the roadmap, the ERISA rules provide large companies a loophole to avoid these state laws. A nationwide strategy for insurance coverage is needed to make sure that those with insurance plans governed by ERISA (as well as medicaid) have appropriate coverage for needed autism services.
  5. There was a very good comment made at the IACC Town Hall meeting in Sacramento on the need for good dental services and care for people with autism. I think this is another under–represented area. One possibility to explore is the use of plaque rinses. Some of the stronger ones will stain teeth if used constantly, but could be useful part of the time (there is one study that shows using 1 week a month will reduce bacteria sufficiently).
  6. some school systems have been partnering with insurance providers to supply autism specific services in the schools (I believe Huntington Beach California is an example). This sort of partnership should be encouraged, especially as long as IDEA is underfunded.
  7. It would be good to see how much effect the underfunding of IDEA has on the education of children with autism. Due to the high costs of autism–specific educational services and the lack of funding, it is possible that many children are unfortunately not receiving appropriate levels of services. This may have long-term costs, both financial and personal, which should be addressed.
  8. Services/supports for “high functioning”adults and children are lacking. Intelligence is relatively easy to quantify, but the challenges for people on the higher end of the spectrum can be quite high. More effort should be applied to (a) Identifying and (b) supporting people with “high functioning” autism.

I thank you for your time,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, September 09, 2008 11:56 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00071] RFI NOT-MH-08-016
Attachments: ASAT IACC RFI letter08.doc

Dear IACC members:

Please find attached a statement from the Association for Science in Autism Treatment (ASAT) in respond to RFI NOT–MH–08–016. Please be in touch if we can support you further or discuss this information.

Very best,

[redacted personally identifying information]

This electronic message transmission may contain information from [redacted personally identifying information] that is confidential. The information is intended solely for the recipient and use by any other party is not authorized. If you are not the intended recipient, be aware that any disclosure, copying, distribution or use of the contents of this information is prohibited. If you have received this electronic transmission in error, please notify me immediately by telephone [redacted personally identifying information]. Thank you.

September 9, 2008

Interagency Autism Coordinating Committee (IACC)
Office of Autism Research Coordination – NIMH
6001 Executive Boulevard, Room 8203, MSC 9669
Bethesda, MD 20892–9669

Dear IACC Members,

The Association for Science in Autism Treatment (ASAT) is a nonprofit organization with the mission of informing the public about science–based autism treatments and to increase access to effective intervention for those affected by autism spectrum disorders. As such, we are interested in responding to your request on high priority areas and concerns for the autism community.

A central concern for individuals with ASD and their families surrounds identifying and accessing effective education and treatment. The large number of ineffective methods that are publicized is of great concern as it creates confusion for consumers since evidence does not support the vast number of purported claims. This is directly in line with [redacted personally identifying information] mission, and thus we offer our support and guidance in providing the most up to date information. Multidisciplinary, state task forces (e.g., New York State Department of Health, Maine Administrators of Services for Children with Disabilities) who have comprehensively reviewed the autism treatment literature and the U.S. Surgeon General‘s report on autism unanimously found overwhelming and clear evidence that Applied Behavior Analysis (ABA) is the most effective autism intervention, and went so far as to recommend it as a primary treatment modality. Hundreds of research articles in peer-reviewed journals also substantiate the effectiveness of ABA as a treatment for this population. This is important to underscore, since mention of these sources and their findings is often omitted from reports and assertions of effectiveness in autism intervention. While it is true that there exists insufficient or no empirical evidence to support the majority of the treatments put forth to address autism, ABA has a lengthy empirical backing of solid evidence.

Though not an easy or inexpensive approach, and certainly not a cure for autism, ABA deserves better review and accurate representation. Also noteworthy is that ABA has been shown to increase independence, offering a cost savings over a lifetime of care. More effort is required to see ABA better embraced in educational settings and applied to adolescents and adults with ASD. The first step is to provide research–based information that leads to real hope.

Regards,
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, September 10, 2008 11:05 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00072] your request for autism responses

Hello, I am a high functioning autistic male who wants a cure for autism. I am responding to your requests for information by September 19 as per your request. I was wondering if the lauren Mottron lab receives funding by the NIMH and under the combating autism act? If so I believe their funding should be discontinued as they have at least one person who undermines the nobel effort to find a cure for autism. This person writes essay implying that people who want to cure autism are intolerant bigots. Also there is an autism researcher named Morton Gernsbacher who wrote an essay, autistics need acceptance and not cure and makes unfounded statements that severely autistic people have made great contributions to the arts and sciences. I was hoping that her funding would also be discontinued and that she will no longer be allowed to peer review scientific articles that have been funded under the combating autism act.

Also, I believe that Mark Blaxill’s and Lynne Redwood’s membership on the IACC should be discontinued as these two cling to the disproven hypothesis that thimerosal causes autism and will only impede advances into finding a cure for this disorder, much thanks

[redacted personally identifying information] autistic

Psssst…Have you heard the news? There’s a new fashion blog, plus the latest fall trends and hair styles at StyleList.com.

From: [redacted personally identifying information]
Sent: Wednesday, September 10, 2008 3:32 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00073] NOT-MH-08-016

I am the parent of a 20 year old young man with autism. I appreciate your request for input.

Our son is very smart in some ways, but very immature emotionally and socially. He comes across as weird rather than disabled. The concern of our family right now is that our son is unable to attend college full time and has been unable to find employment. He is taking one college course at a time, which is what he is able to handle successfully. Because his IQ is in the normal range, we have been told he does not qualify for any supports through our county or SSI. He is willing to work, and wants to work, but given his social difficulties and stress levels, I am not sure he would be able to work full time.

For now, my husband and I can support him. We worry about the future when we are no longer here. In most ways our son is a success story - with a lot of early intervention, special education, and private therapy he graduated with his high school class, can carry on a conversation and in high school was able to attend regular classes with support and graduated with his class. On the other hand, he is unable to drive; he is still fairly fragile in terms of staying on an even keel emotionally throughout the day; understanding the social implications of situations; and being able to control his OCD and impulsive behavior. These difficulties that are directly related to his autism continue to plague him and set him apart from his peers.

He is too high–functioning for a sheltered workshop (even if he could attend, which he can’t because there is no funding stream) and yet he is not normal enough to go to school full time or work like his peers. I know that there are many families in the same boat. It would be nice to know that this area of need is being investigated. Could people with an autism spectrum diagnosis and an IQ in the average range get MA? Right now they do not qualify in our county, but most insurance companies will deny them any health insurance because of their diagnosis. We have been told that we would have to purchase “high risk” insurance for him for individuals who are otherwise uninsurable. I wouldn’t mind him working part–time if he could get health insurance.

My highest priorities would be:
employment
health care
education
housing
transportation

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, September 10, 2008 7:09 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00074] NOT-MH-08-016
Attachments: IACC Sep RFI Ltr.doc

Attached please find comments from the Association for Behavioral Health and Wellness on your notice number: NOT–MH–08–016

Please confirm receipt of this email.

Thank you,

[redacted personally identifying information]

September 10, 2008

I am writing on behalf of the Association for Behavioral Health and Wellness (ABHW) – formerly the American Managed Behavioral Healthcare Association in response to your request for information about what we consider to be high–priority issues and concerns surrounding services and supports for children, youth, and adults with ASD. ABHW is an association of the nation‘s leading behavioral health and wellness companies. ABHW members cover over 147 million people across the country in both the public and private sectors.

Research areas of direct relevancy to ABHW are furthering the science around effective assessment of deficits and the linkage to evidence based interventions that are effective; we agree that intervention research should focus on the mode of delivery, intensity, duration and dose as well as unique characteristics of the individuals with ASD in an effort to develop more personalized interventions, treatments, and services. There are so many ambiguities around the current array of therapeutic interventions for Autism Spectrum Disorders. We are most interested in the IACC prioritizing the following:

  1. additional research focused on behavioral therapies, such as Applied Behavior Analysis (ABA), including randomized controlled trials and trials that compare ABA to other techniques;
  2. research and clinical trails targeted at determining the efficacy of other conventional antipsychotics for improving the behavioral symptoms in young children with autism and clinical trials to determine which current instruments could be adapted for use or to use the research findings from the clinical trails to develop a specific instrument to be used by providers to measure changes in the core symptoms;
  3. research aimed at the assessing methods of treating co-existing medical or psychiatric conditions and assessing how the methods affect ASD symptoms and severity;
  4. identification of neurobiologically based markers that are linked to critical deficits;
  5. identification of assessment processes that are feasible in a real world clinical setting that should be targeted for proven effective interventions;
  6. continued accumulation of sound evidence that links an effective intervention to neurobiological deficits and the co–morbid behaviors that appear as part of the spectrum of the disorder;
  7. establishment of a process for the weighting of evidence to support decisions around the most effective choice of interventions; and,
  8. continue to fund processes for centralized vehicles for the gathering, interpretation and dissemination of research findings. We also would like to see the establishment of a centralized clinical data base for reporting of research findings that is easily accessible to consumers, providers of care and health systems. See below for more detail.

Additionally, we recommend the creation of strategies to improve the availability and access to ABA services for individuals with autism by increasing the number of ABA providers who may provide consulting, training, behavioral plan development and supervision of ABA tutors. We also recommend that education is offered to psychiatrists and psychologist to become trained to supervise specialists and tutors and that national standards be established for an ABA tutor–equivalent provider class. In this same vein we recommend the establishment of minimum requirements for licensure/regulation of ABA providers, including specialists and tutors, to provide consistency on a national basis.

We would like to see the merger of databases that house data from healthcare, education and social services administration to facilitate the study of whether early diagnosis, entry to services, and type of intervention affects the course of ASD over a lifetime. We also believe it is necessary to establish a national registry with centralized information that would allow us to look at treatment and outcomes from an understandable and comparable data source. Researchers, major providers of care, consumers, and insurance companies should be consulted as to what the data template should look like for this registry.

Thank you for this opportunity to provide input to the IACC.

Sincerely,
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, September 11, 2008 4:49 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00075] NOT-MH-08-016

[redacted personally identifying information]

Dr. Dr. Schwechter,

Please accept my sincere thanks for opening up this avenue to any interested parties to provide input on potential research topics regarding Autism.

After spending literally hundreds of hours researching the medical side of the autistic condition, I have come to believe that the controversial vaccine issue is only the tip of the iceberg of infections, viruses, bacteria and toxins at play in our children’s bodies. It does seem that the complexity of the situation necessitates that many things are working together to wreak havoc. Typically, medical and laboratory studies do not look at synergies and it seems to me, based on what I’ve read about how parents have recovered a child from the spectrum, that attacking many things at once is the only way.

I do believe it is very worthwhile investigating the role of viruses, particularly Herpes family viruses, in the health of the mothers of multiple children on the spectrum and their children. I believe this is also true for bacteria. Some research lately has looked specifically at Bartonella, Babesia and co-infections with Lyme. Also consider the strength of certain fungi that can impact a person’s health in a systemic way (note AIDS patients typically become overgrown with yeast) however this may be a side effect of a weakened/skewed immune system rather than the cause. The role of toxins, particularly mercury should be considered in conjunction with these viruses and bacteria and how they might be utilized by the pathogens in some undiscovered way. The role of biofilms must not be overlooked as some nasty bacteria are able to chain themselves and protect themselves from treatment and perhaps detection. All of this may work together to affect neurological development when an undeveloped or permeable Blood Brain Barrier allows certain substances and pathogens to enter the brain.

This issue appears seriously complex in most cases and looks, by every account I have read from parents on multiple email groups and from personal contact and books (as well as lab tests), to have components of heavy metals, viruses, bacteria, and fungus. If all parties would like to vindicate vaccines from doing damage to children (assuming that there is some public that still holds vaccines accountable, and in my opinion does have merit), we must understand what is going on these children’s immune systems prior to receiving vaccines, when the tipping point might actually be reached.

In summary, some ideas I believe worth pursuing:

  1. children that have recovered – what works to remove symptoms (before and after lab tests)
  2. infections in mother (subclinical) passed on to child
  3. relations between viruses and metals, bacteria and viruses, bacteria and metals
  4. biofilms
  5. Blood Brain Barrier integrity

I believe it would be important to accept that some of these viruses may be difficult to detect by mainstream methods and that the study should involve experts, particularly those doctors who have been on the cutting edge helping children on the spectrum, and solicit their inputs. Additionally, it is VERY important to keep pharmaceutical companies and its avatars out of the program studies. When the outcome of a study is predetermined, it is a huge waste of money, as you know.

Thank you again for the opportunity to provide input.

Regards,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 12, 2008 1:03 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00076] Specific Research Ideas i.e. Autism
  1. Use MELISA Medica foundation metal hypersensitivity blood testing as a biomarker for potential indication for chelation? Many autistic children have metal hypersensitivity. My understanding is that when trace metals combine with myelin in the brain the immune system can create antibodies to the myelin/trace metal complex. I am finding hypersensitivity to inorganic mercury and arsenic so far in my practice which is devoted to assessment of medical and environmental contributors to autism in children.
  2. A Physicist/cell biologist should research the Beemer 3000 as a tool for acute meltdowns in autistic children. I have heard some amazing anecdotal stories of very good results as a maintenance tool and as a tool for acute episodes of tantrums for example on planes. Research in Europe and elsewhere shows an effect on oxidative stress and improved microcirculation.This tool uses electromagnetic fields to effect body physiology.

I can facilitate contacts in these 2 areas if necessary.

Best Regards, Dr. [redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Sunday, September 14, 2008 3:12 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00077] Inquiring on input?

Hello,

My name is [redacted personally identifying information], Indiana. My son, [redacted personally identifying information] has Severe Autism, he is 15 yrs., and 5’10” weight is 268lbs. My husband and I would like to know what exactly do you need answered? Do you want a separate email for each of the 6 Q.? Would you like an answer for all in one email ? I am sure, I can help you some way.

Sincerely,

[redacted personally identifying information]

No virus found in this outgoing message.
Checked by AVG - http://www.avg.com
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Monday, September 15, 2008 9:32 AM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00078] RFI NOT-MH-08-016
Attachments: Magellan Response to NIMH RFI docversion2.doc

Good morning:

On behalf of Magellan Health Services, thank you for the opportunity to provide comments on NIMH’s Request for Information regarding the issues surrounding services and support to individuals with Autism Spectrum Disorders (ASD). Attached, please find Magellan’s comments for your review and consideration.

Thank you,

[redacted personally identifying information]

***Confidentiality Notice***This electronic message transmission contains information belonging to Magellan Health Services that is solely for the recipient named above and which may be confidential or privileged. MAGELLAN HEALTH SERVICES EXPRESSLY PRESERVES AND ASSERTS ALL PRIVILEGES AND IMMUNITIES APPLICABLE TO THIS TRANSMISSION. If you are not the intended recipient, be aware that any disclosure, copying, distribution or use of this communication is STRICTLY PROHIBITED. If you have received this electronic transmission in error, please notify us by telephone at [redacted personally identifying information]. Thank you.

Magellan's Input to the National Institute of Mental Health (NIMH) Request for Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD)
RFI, NOT-MH-08-016

Magellan Health Services, Inc. (Magellan) welcomes the opportunity to respond to NIMH’s Request for Priorities regarding the high priorities and issues surrounding services and support to individuals with Autism Spectrum Disorders (ASD). Magellan, the nation’s leading manager of behavioral health and substance abuse services, currently offers assistance focused on the unique needs of this population to individuals with ASD and their families through a network of approximately 60,000 behavioral health providers. The variety, intensity, and comprehensive nature of services needed by individuals with ASD – –as well as professional involvement from various disciplines – – requires coordination, experience and a comprehensive approach that is goal oriented and sensitive both to the individual and the family.

Magellan‘s program includes comprehensive, coordinated care to children with ASD and their families by coordinating care with pediatricians and developmental specialists for evaluation and diagnosis, Early Intervention Services for ages 0 – 3, and pediatric specialists who treat children with ASD for medical issues. Magellan refers to behavioral health providers to address behavioral issues such as aggressive or self–injurious behavior and non–compliance and for high functioning individuals with ASD for behavioral therapy sessions to promote improved function and address co–morbidities.

Magellan would like to offer the following input related to the medical services provided to individuals with ASD.

Medical Services –

Magellan supports NIMH‘s goal of identifying children with or at risk for ASD with appropriate interventions, including funding research opportunities to develop screening instruments and approaches for use in community settings to identify individuals who require diagnostic evaluation and to develop sensitive clinical diagnostic tools for diagnosing ASD in widely diverse populations, including underrepresented racial and ethnic groups, females, and younger and older age groups.

Magellan also supports NIMH‘s goal of developing interventions that are effective for reducing both core and associated medical symptoms, building adaptive skills, and preventing the disabilities associated with ASD. Magellan supports large scale studies that compare interventions and combinations of interventions to identify what works best for which individuals. Magellan supports the use of randomized controlled trials that address co-occurring medical conditions associated with ASD. Magellan is particularly interested in research opportunities that assess methods of treating co–existing medical or psychiatric conditions and assessing how such methods affect ASD symptoms and severity.

From: [redacted personally identifying information]
Sent: Monday, September 15, 2008 10:20 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00079] NOT-MH-08-016

Dear IACC members,

I’ve addressed each of the areas mentioned in the RFI on services. Much can be done to fund research for the following areas, which will impact autistic individuals throughout the lifespan, rather than focusing narrowly on causes and cures, which comprises the bulk of the current research funding.

Education:

Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address implementation so that teachers, students, parents, and other education professionals are up–to–date and have access to information, training, technological resources such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding.Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care.Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure for other types of housing is unavailable or underutilized. Research needs to include cost–effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.

Transitions:

Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have nowhere to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling. Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community–based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people, throughout the lifespan, and in different situations, needs to be undertaken. Areas to focus on are keeping people on the autism spectrum safe if they have a tendency to wander, or do not understand dangerous situations. Education of parents, professionals, first responders, and autistic people should be undertaken, and the best methods for ensuring safety should be addressed by research in this area. Sometimes autistic people can appear unusual in behavior, which will attract attention from law enforcement and other personnel.Training for professionals in aspects of autistic behavior that might not be understood is a crucial area to address in order to promote the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems.Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken. Research into the effect of common medications, including for non–autistic–related health problems such as diabetes, should be undertaken. Because of the possibility of extrapyramidal or paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community–based participatory research can be invaluable in determining the best ways to access health and other care.

Finances:

Across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one–size–fits–all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in planning an estate, especially for individuals who may need ongoing care throughout life. Autistic adults also may need assistance with estate planning. Research leading to the development of estate planning tools that can assist families and autistic individuals in making sound decisions should be initiated.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Monday, September 15, 2008 1:21 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00080] RFI re: autism

I have a 14 yr. old daughter with autism and intractable epilepsy and global apraxia. She is non–verbal. I have many concerns about her adult life:

  1. a COMMUNITY GROUP HOME. While my county ([redacted personally identifying information], MD) has group homes for disabled adults, none of them are geared towards adults with autism. The waiting list to get in a home is very long. The homes service adults who are MR and/or have varied disabilities. Many people with autism have co–morbid disabilities, making them quite complicated Staff who run and maintain the homes are not trained in how to help adults with autism specifically. Adults with autism often need different accom–modations than other adults in group homes: more structure and routine, perhaps less going out in the community (I know other people push for community involvement, but many people with autism are overwhelmed/confused/overstimulated by public places), specific diets, etc. I do not know where my daughter will live when my husband and I can no longer care for her. This frightens me a great deal, and it frightens her as well.
  2. MONEY TO SUPPORT HER THE REST OF HER LIFE Government benefits keep people with disabilities in poverty. Please tell me how my husband and I are supposed to save for our retirement and for her entire life, as well? Because her epilepsy is intractable, I am unable to work, so my family lives off of one income. We have a son to send through to college in a few years. I actually hope I out–live my daughter.
  3. HEALTHCARE FOR ADULTS WITH AUTISM that is affordable to them. They need places to go where health practitioners (dentists as well) are able to work well with people with autism. An example of a future need for my daughter’s healthcare: This fall she needs to have dental cleaning, x–rays and fillings under general anesthesia as an out–patient at the local hospital. The dentist says she will need to have this done every 2–3 years, as she is unable to tolerate having her teeth brushed very often. (It’s a red–letter day when she is seizure–free and her teeth can be brushed twice in one day.)
  4. FINDING STAFF TO WORK IN THE GROUP HOMES Pay is horrid and turnover is frequent.

Thank you for reading this. I appreciate the chance to give input!

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Monday, September 15, 2008 3:00 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00081] IACC NOT-MH-08-016

Please note my remarks for feedback:

  1. It is to medical, strategies are addressed but not accurate
  2. Bibliography missing basic authors on stragies on autism– – –only medical, need someone who is more familiar with educational strategies to do more research– –no Journal of Applied Behavior Analysis studies sited yet general referenced in Section IV.
  3. WHAT ABOUT THE EDUCATIONAL JOURNALS… How come a group with 45 experts in the room were unfamiliar with some of the sites and were wondering where are the key studies?
  4. Referenced PECS on page 17, yet no Bondy and Frost in bibliography, this is a trademark product, it is NOT a visual representation tool. SECTION IV needs ALOT of work as the information is misleading and not totally correct. This section should be redone.
  5. RCT studies using random samples most likely cannot be completed since autism is a syndrome, however large studies could be done through sampling individuals with similiar needs.
  6. What about the validity and repetitive studies that are conducted through single subject design, yes, they are not RCT however, many of the strategies do work with people with autism.
  7. WHAT IS DESCRIBED AS ABA IS NOT ABA, that is discrete trial training which is only one type of ABA– – –there are hundreds. To name it as such is a discredit to ABA. pg. 17

I believe the IACC Strategic Plan is a great place to start but boy is it missing some key component especially when discussing strategies yet the information provided in Section IV is not totally correct and key educational components and cites are missing.

Sincerely,

[redacted personally identifying information]
20 years in the field of autism

[redacted personally identifying information]

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From: [redacted personally identifying information]
Sent: Monday, September 15, 2008 10:49 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00082] Autism Issues

I am a person on the autism spectrum. Therefore, I would like to respond to your RFA.

I believe that the Americans With Disabilities Act (ADA) is at best a paper tiger with respect to hidden handicaps, such as autism. I think laws need to address issues such as autism directly without the burden of proof on the part of the autistic.

I believe that one of the biggest issues facing the autistic community today is lack of education on the part of the neurotypical community concerning autism. While the best and the brightest in many areas are often autistic, companies like mine are constantly looking for people with excelent social skills, and are looking for ways where ones weaknesses are highlighed as training opportunities. I believe that this discriminates against autistic people in that we will never develop anything close to excelent social skills, and while corroboration is often encouraged, the needs of people who cannot function in that environment are ignored, or perhaps worse let go because of performance issues.

Instead of constantly looking for a cure for autism, we need to figure out a way for these brilliant people to contribute to the society in which we live and provide the environment and support they need in order to do so.

[redacted personally identifying information]

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From: [redacted personally identifying information]
Sent: Monday, September 15, 2008 11:58 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00083] Notice Number: NOT-MH-08-016

To summarize what I think would be useful would be the things I mentioned on providing a diagnosis. (this very affirming and helpful act of doing a diagnosis is a pre–requisite by many in order to feel they qualify for any kind of aid). I think having transitional planning is an urgent need for many. A lot of the times, there’s little that can be done for an adult who has been with parents for their whole life until a late age (sometimes 40s and 50s) and suddenly, when family tragedy happens, there’s little to no care options available except perhaps a retirement home/early retirement due to disability. Often, that’s not even available but such services could be adapted to provide that level of need perhaps.

Job coaching and occupational therapy might be useful for some recently diagnosed/undiagnosed adults who are still coping with a job or perhaps getting a new job more suitable for them as their current job might be horrifically stressful and unsuitable. Career counselling is perhaps a need like any other as well but may require extra care that is cognizant of our challenges and the typical responses by potential employers.

From: [redacted personally identifying information]
Sent: Tuesday, September 16, 2008 11:29 AM
To: IACC Services (NIH/NIMH); IACC Services (NIH/NIMH)
Subject: [Comment 00084] coments on IACC autism draft
Attachments: Dear IACC.doc

Dear IACC, I wish to comment on the draft strategic plan for autism. Please note the attachment. Kindly confirm the receipt of this document.

Regards,

[redacted personally identifying information]


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September 16, 2008

I was on the phone for the entire April 21st IACC Strategic Planning Session. I have read the IACC Strategic Plan for Autism Spectrum Disorder Research. I wish to comment on the draft.

I have been involved in the field of autism research as [redacted personally identifying information] for about 15 years. [redacted personally identifying information] the National Alliance for Autism Research and [redacted personally identifying information] its SAB’s. [redacted personally identifying information] a major supporter of the Autism Genome Project (AGP), as well as other scientific and community based projects. [redacted personally identifying information] the Yale Child Study Center.

I want to complement the committee on the creation of this very impressive document. Itis by far the most comprehensive and well articulated strategic plan for autism that I have seen. Undoubtedly, it could not have been done without the hard work and collaboration of many people.

I know that dollar numbers have yet to be attached to the research priorities. The committee’s intention to enhance accountability by using SMART is admirable. However, throughout the discussions on April 21st and this draft there is no mention of the potential “impact factor” of each of the priorities. Aspiration goals are noble, and while the pace of discovery may be unpredictable, there may be more objective measures or parameters that can be established that can help to prioritize your funding. This may be particularly true of translational projects. I do believe that if your committee spent some time trying to evaluate the impact of success in each area prior to your final budget, that you may have an enhanced method to prioritize your spending. The vote by the committee members on April 21st has limited value in the absence of the discussion of the impact on the autism community of obtaining success in a given area.

In response to your request on comments for priorities, I would like to point out an enormous unanswered question: How many adults are there with autism? [redacted personally identifying information] a local ARC [redacted personally identifying information] have speculated that as many as 25% of residents currently classified as mentally retarded, are actually on the autism spectrum. I think that attempts to quantify this number will have an enormous impact on the allocation and direction of research.

I think that a higher priority needs to be given to detailing the strategic plan for federal resources to promote best practices for adolescences and adults as they transition out of IDEA supported placements. A “Quality of Life Rating Scale” would help guide parents and professionals on best practices for adult living as well empower parents to develop programs with more progressive and cost–effective methods.

Employment concepts are also underrepresented. NIH. should consider enlisting the corporate sector as a partner in job initiatives with a particular interest in monitoring mental health support.

Finally, I think that the strategic plan should include measuring and enhancing the neural plasticity and adaptive brain reorganization of adolescents and adults with ASD. The current document emphasizes early intervention. But research from traumatic brain injury cases shows that the brain can be retrained even in later years. I would like to see research opportunities that incorporate training protocols successfully used with traumatic brain injuries adapted for adolescents and adults with autism.

Respectfully submitted,
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, September 16, 2008 4:20 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00085] IACC comments

Good Afternoon.

I am [redacted personally identifying information] a parent of a young man who lives with autism and also carries a dx of significant MR. My son fits at the low to moderate range of the autism spectrum. I realize that quantifying autism is not terribly politically correct but I need for you to hear from this end of the spectrum. Our children are not looking at college or even independent living options but they do deserve a good quality of life and can be productive and meaningful members of society. If only there were supports and help for them.

To put this is simple terms I thought I would number them. The needs are as follows:

  1. Day programs that are centerbased but have the ability for routine and frequent work and recreational activities during the day. Many families whose children function at the lower end of the spectrum say that they need something that allows for time to do some kind of work, probably volunteer work in a setting that works for that individual and also fun activities during the day.
  2. Respite services that look more like “senior center bus trips” or activities that occur on the weekends and involvetypical peer volunteers so that a bond in the community could be fostered. Using faith based organizations to once a month offer an activity with a group coming alongside as support and friends would be wonderful. Something more typical than say special olympics but with supports from professionals as needed.
  3. Flexibility in spending and supports for activities.
  4. Inclusion in typical community service groups. There needs to be someone who will make those introductions and support the person in joining and helping organizations like Lions, Elks, Volunteer Fire Companies, Church groups… So that individuals can be known and have activities available LIKE EVERYONE ELSE.
  5. Support for job sharing and a way around the civil service requirements to work in county and state government offices. A way to fund through a consulting base for individuals with disabilities to be hired to do some basic work on a part time basis that supports the organizations and agencies that support them.

That is all for now. Thank you for this opportunity to have input. Please don’t hesitate to contact me at this e–mail address if there are any questions or comments.

Respectfully submitted

[redacted personally identifying information]

Success comes when people view each other as invaluable resources working towards a common goal

From: [redacted personally identifying information]
Sent: Tuesday, September 16, 2008 6:38 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00086] ME AND ASPERGER'S SYNDROME

Hi, there,

My name is [redacted personally identifying information]. I’m a 40 year old man with lots of questions about my illness. I’m uncertain wheather or not I have this Asperger’s Syndrome, I have never been tested for it. I’m very isolated and my social skills are a problem. I’ve been told I’m very intelligent. I would really like to know if I am indeed dealing with this disorder.

Thank you,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Tuesday, September 16, 2008 9:35 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00087] Autism

I am the mother of a young adult with autism, about to transition to adult services. I want the “powers that be” to support Community Integrated Living. I want them to support the Illinois Blueprint for System Redesign, a 7 year plan to turn around the situation in Illinois. I want them to stop supporting mainly large institutions and have the money follow the person for supports in the community. I want these community homes to house 1 person per bedroom and no more than 3 to share a bathroom. I don’t say to close all of the institutions or 16 bed ICDF’s (I think that is what they are called) as there are probably some people who want that type of placement, but it should be a CHOICE. I want them to agree to pay a decent living wage to the workers who support our individuals so that more people of a better caliber will take the jobs. I want them to stop trying to always balance the budget on the backs of our persons with disabilities just because they are defenseless. I want them to set the standard where they would want it if their child were going to be “in the system”.

Thank you.

From: [redacted personally identifying information]
Sent: Wednesday, September 17, 2008 2:34 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00088] I heard you were looking for input from ASD people.

Hi.

I am an Aspie living in Arizona. I heard that you were looking for input as far as what issues concern us the most. I happen to be someone who does not exactly believe in hiding or passing as normal, which makes my greatest concern safety. The reasons are:

  1. I tend to think and interact with this world in a very unique way, which sometimes leads people to question my motives and tend to feel very uncomfortable around me. I have foud that the people around me are not able to fully understand my thoughts no matter how hard I try to express them, or my actions no matter how hard I try to explain them. I cannot count the number of times that someone has complained that I make them feel weird or come right up to me and accused me of something, usually sexual in nature. This had led me not to put any faith in anyone's assessment of my character and has led me to question how safe I can be in social and work settings.
  2. I tend to ave my actions misunderstood as being sexual in nature. People around me see the fact that I interact with people differently and sometimes just assume the worst. On the one hand when I stay quiet I get people wondering why I’m so silent and when I just try to be friendly I am viewed as being over th top, making people wonder why I am so sexually aggressive when that was not my intent at all. While theones that stay quiet don’t really bother me, there are going to be others that don’t, ad can nearly cause a fight.
  3. About every three to six months I end up with someone getting really weirded out and upset with me, turning sometimes aggressive. While this does not turn into physical fights, it will involve yelling and screaming at hysterical levels and I will feel sure that the person will hurt me if given a chance. One of my coworkers, for example, admitted that he would have beat the snot out of me if not for the fact he would get in trouble. I have had others watch me in person, studying me like they think they will need to pounce, and once in a while I've had someone that has.

When all is said and done, these factors all make me very wary of whoever I am around. By that, I don’t just mean friends, but also coworkers, strangers, etc. This has led me to another belief that the mere mention of it sometimes scares people, but that I do practice, and that is putting their names into search engines and looking them up online. I feel that I have to use any measure at my disposal to know whether or not I can be safe around anyone, even if that means seeing if they have posted weird or threatening things online.

I feel that the only way to take care of this is to educate people. I honestly think that when they understand ASD’s, how that makes an individual think, how and why we react to the world the way we do, how we actually show our emotions, and why we can get jaded and scared towards people in general people will start to be less likely to view me as a threat. I can only really start to feel safe around them when they stop treating me as a threat and start to realize that I’m a human being that just makes mistakes.

Thank you, btw, for asking for our input.

See how Windows connects the people, information, and fun that are part of your life. See Now

From: [redacted personally identifying information]
Sent: Wednesday, September 17, 2008 12:44 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00089] NOT-MH-08-016
Attachments: Identified Need ASD .doc

Please find attached a response to the Request for Information for the Interagency Autism Coordinating Committee. The high priority issue is the need to expand the use of evidence–based diagnostic instruments by experienced clinicians to clinical settings in rural and underserved areas. This is submitted by the Virginia Leadership Education in Neurodevelopmental Disabilities Program (Va–LEND) at Virginia Commonwealth University.

Thank you,

[redacted personally identifying information]
[redacted personally identifying information]


Confidential –PLEASE NOTE: This communication may contain information that is legally protected from unauthorized disclosure. If you are not the intended recipient, please note that any dissemination, distribution or copying of this communication is strictly prohibited. If you have received this message in error, you should notify the sender immediately by telephone or by return email and delete this message from your computer. Thank you for your cooperation.

Identified Need: Expanding the use of evidence-based diagnostic instruments by experienced clinicians to clinical settings in rural and underserved areas is an important priority. Early identification has been recognized as an important step in optimizing outcome for children with ASDs (Bridgemohan, 2007). The CDC, working with the American Academy of Pediatrics (AAP), initiated the “Learn the Signs – Act Early” campaign and promotes improved surveillance and screening for ASD through initiatives such as ALARM: Autism is prevalent; Listen to parents; Act early; Refer; and Monitor. Data indicate that there is a six-month interval between the onset of parental concerns and seeking professional help, and a 13-month interval between first-documented evaluation and diagnosis on average (Howlin & Asgharian, 1999; Wiggins, Baio, Rice, 2006). Factors such as less severe symptoms, lack of continuity of care, hearing loss, pain hypersensitivity, rural residence, cultural differences, and lower socioeconomic status may be associated with further delayed diagnosis (Mandell et al, 2005).

The American Academy of Pediatrics (AAP) recently published two clinical reports, “Identification and Evaluation of Children with ASDs” (Johnson, & Myers, 2007) and “Management of Children with ASDs” (Myers & Johnson, 2007) which are expected to be used widely in the pediatric community. The first report included an AAP Recommended Surveillance/Screening Algorithm that identified risk factors (4 questions) for autism and recommended that, if >2 risk factors are present in a child > 18 months, providers should administer an ASD-specific screening tool.

Autism-specific screening tools that incorporate the core symptoms of ASD and have been evaluated in large populations of children include the Modified Checklist for Autism in Toddlers (M-CHAT; Robins, Fein, Barton, Green, 2001) for children 16 to 30 months of age, The Pervasive Developmental Disorders Screening Test II (PDDST-II) for children starting at 18 months, and the Social Communication Questionnaire (SCQ), formerly known as the Autism Screening Questionnaire, for children >4 years (Dumont-Mathieu et al, 2005). While these tools have received increasing use in research and clinical contexts, concern continues that existing screening instruments may not be adequate, particularly in settings serving culturally diverse populations (Wallis & Pinto-Martin, 2008). States are participating in AAP and ABCD (Assuring Better Child Health and Development) initiatives to increase screening.

While some have commented that a broader functional/developmental approach is needed in screening, treatment and research (Greenspan et al, 2008), implementation of the AAP algorithm is likely to produce a substantially increased number of toddlers who are referred for comprehensive ASD evaluations. If the results of toddler screening are positive (i.e., suggestive of an ASD) the AAP guideline directs the clinician to refer the child for a comprehensive ASD evaluation. Such a comprehensive evaluation is a clinical process. The literature has repeatedly affirmed the principle that the best diagnostic tools are effective only when they are used and interpreted by experienced clinicians (e.g., Reaven, Hepburn, & Ross, 2008). Nonetheless, recent years have seen the development and widespread utilization of several diagnostic assessment instruments for evaluating the possible presence of an ASD in children.

Foremost among these instruments have been the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). The ADOS (Lord et al, 2000) is a semi-structured play assessment designed to elicit behaviors that are important to the diagnosis of ASDs. The ADOS requires a skilled examiner to initiate a hierarchy of planned social contexts. The ADI-R (Lord et al, 1994) is a standardized caregiver interview designed to elicit information for the differential diagnosis of PDDs. The ADOS and ADI-R have demonstrated adequate validity and reliability. The item scores are summed in the areas of communication, social interaction, and restricted, repetitive behavior. Information on the age at onset is also gathered. Expanding the use of these evidence-based tools to rural and underserved settings is an important priority.

  • Bridgemohan, Carolyn. (2007). UptoDate in Pediatrics.
  • Dumont-Mathieu, T, Fein, D (2005). MRDDRR 11:253
  • Greenspan, SI, Brazelton TB, Cordero, J, Solomon, R, Bauman, ML, Robinson R, Shanker, S, Breinbauer, C (2008) Pediatrics 121:828.
  • Howlin, P, Asgharian, A. (1999) Dev Med Child Neurol 41:834.
  • Johnson, CP, Myers, SM, and the Council on Children with Disabilities. (2007). Pediatrics 120:1183.
  • Lord, C., Risi, S., Lambrecht, L., Cook, E.H., Leventhal, B., et al. (2000). J Autism and Dev Disorders, 30, 205-223.
  • Lord, C., Rutter, M., & Le Couteur, A.L. (1994). J Autism and Dev Disorders, 24, 659-685.
  • Mandell, DS, Novak, MM, Zubritsky, CD. (2005). Pediatrics 116:1480.
  • Reaven, J.A., Hepburn, S.L., & Ross, R.G. (2008). Clin Child Psyc and Psyc, 13, 81-94.
  • Robins, D.L., Fein, D., Barton, M.L., Green, J.A., (2001).J Autism and DevDisorders, 31, 131-144.
  • Wiggins, LD, Baio, J, Rice, C. (2006). J Dev Behav Pediatr 27: S79.
From: [redacted personally identifying information]
Sent: Wednesday, September 17, 2008 3:09 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00090] Request for Information - Comments on RFI
Attachments: Comments on RFI 2 Future Research_09132008.doc

RE: Request for Information (RFI): Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD)

To Whom It May Concern:

I am writing in response to the IACC‘s request for input regarding high–priority issues and specific research initiatives to support individuals living with ASD. Please find my comments attached. If you should have any questions, please contact me at [redacted personally identifying information] or by email.

Sincerely,

[redacted personally identifying information]
Bureau of Autism Services l Office of Developmental Programs
Department of Public Welfare

[redacted personally identifying information]
www.autisminpa.org
www.dpw.state.pa.us

  1. It is critical that we gain an understanding of the scope of need for appropriate supports in adults living with autism spectrum disorder (ASD). By determining the incidence of individuals with ASD falling into the categories below, states can more adequately assess the gravity of the problem, and the extent to which new programs are needed.
    1. Research Opportunities:
      1. Determine the incidence of adults with ASD, by state and across the country, who are:
        1. Receiving Medical Assistance (MA)
        2. Receiving Social Security Income (SSI) and/or Social Security Disability Income (SSDI)
        3. Receiving public assistance
        4. Living in public housing
        5. In Home and Community-Based MA Waivers (developmental disability, mental retardation/intellectualdisability, mental health, other)
        6. In mental health programs (e.g., group homes, community programming, individual/group therapy, etc.)
        7. Receiving vocational rehabilitation services
        8. Living in psychiatric hospitals
        9. Living with and/or supported by a parent or parents, or other family member/caregiver
          1. Age and health status of caregiver
          2. Status of future planning for individual with ASD
        10. Unemployed
        11. High School or college graduates
          1. If earning a college degree, are they currently employed?
        12. Homeless
        13. Involved in the criminal justice system
  2. In order to design appropriate supports for adults with ASD, it is necessary that we look at the factors currently contributing to positive outcomes.
    1. Research Opportunities:
      1. Assess factors associated with successful community integration in adults over 21 years with ASD
        1. Positive outcomes may be defined as, or include the following:
          a) Employed
          b) Living independently or with some support
          c) Decrease in # of hospitalizations
          d) Increase in functional skills (e.g., use of public transportation, preparing meals, communicating wants/needs, social skills, etc.)
          e) Improved quality of life
          f) Decrease in caregiver stress
        2. Factors contributing to/inhibiting success may include the following:
          a) Local, state, federal programs
          b) Staff characteristics
          c) Family characteristics
          d) Severity of symptoms
          e) Comorbidity issues
          f) Geographic location
          g) Level of education (individual with ASD)
          h) Family support (i.e., counseling, respite care, access to information)
From: [redacted personally identifying information]
Sent: Wednesday, September 17, 2008 3:26 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00091] NOT-MH-08-016
Attachments: Crisis Prevention Institute Comment NOT-MH-08-016.doc

Dear Dr. Schwechter:

Please accept the attached on the behalf of [redacted personally identifying information] of Research and Development here at the Crisis Prevention Institute. Thank you and your Subcommittee for allowing for public input on the Subcommittee’s research priorities in the upcoming years.

If you or the subcommittee have any questions or you would like further clarification on the comments we have provided on the attached letter, do not hesitate to contact me directly. I can be reached by phone at [redacted personally identifying information] or by return email to [redacted personally identifying information].

Sincerely,

[redacted personally identifying information]
Crisis Prevention Institute, Inc.
[redacted personally identifying information]
www.crisisprevention.com

“To be angry is easy. But to be angry at the right person, at the right time, for the right reason, with the right amount of anger, is not easy.” Aristotle

The content of this communication may be confidential and proprietary. If you have received this message by mistake, are not the intended recipient or are not an agent responsible for delivering it to the intended recipient, please inform the sender of the error by email reply, and delete it from your system. You may not retain, copy, or disseminate this message, or disclose its contents to anyone without the express written consent of the author. Thank you.

[redacted personally identifying information]
Crisis Prevention Institute, Inc.
[redacted personally identifying information]@crisisprevention.com
September 17, 2008
Office of Autism Research Coordination
National Institute of Mental Health
[redacted personally identifying information]

Dear Dr. Schwechter:

On behalf of the Crisis Prevention Institute (CPI), I commend the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD) on its efforts to advance research for individuals affected by ASD. It is with keen interest that I respond on CPI’s behalf to the recent draft of the Subcommittee’s strategic plan, dated August 15, 2008, given that many of the professional staff who work directly in support of individuals affected by ASD turn to CPI to learn crisis management skills. These professionals come from a variety of settings, frequently providing direct and daily care to individuals with ASD and their families.

I am encouraged by the Subcommittee’s efforts to include research on Community Integration for people with ASD. Given that the diagnostic rate for individuals with ASD is estimated at 1 in every 150, it is likely that nearly everyone within a given community will be in contact with someone on the spectrum. Having been made aware of a paucity of training available for people throughout a community with less frequent contact with individuals affected by ASD, CPI has developed an instructional seminar intended to provide information on how to recognize, relate and respond to a person with ASD. These professionals include: emergency responders, educators, police, librarians, retail associates, dentists, or anyone who will provide some sort of common service to individuals with ASD in their community.

Our expertise in developing training has focused on programs designed for delivery to staff providing direct care, education, and services to individuals with ASD. The research base for training programs for staff is still emerging, and, as such, we ask that the Subcommittee’s research priorities be expanded or clarified to include interventions designed as such. Quantitative and qualitative research designs examining quality of care indicators, as well as topics such as staff confidence before and after training, have been effectively used to help gauge the effectiveness of such training implementations. We are also aware of the increasing value in research producing practice-based evidence and ask that the Subcommittee invite these designs as well.

Any questions members of the Subcommittee might have concerning interventions intended to implement training for professionals who frequently – or only occasionally – provide services for individuals with ASD can be directed to me through my associate, [redacted personally identifying information]. He can be reached by phone at [redacted personally identifying information] or by email at [redacted personally identifying information]. Once again, I commend you and your Subcommittee on its excellent work to help provide for better outcomes for individuals with ASD.

Sincerely,

/s/

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, September 17, 2008 7:31 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00092] Autism Utah- NOT-MH-08-016
Attachments: ACU [redacted personally identifying information

The Autism Council of Utah is an independent Council working to foster collaboration, communication, and learning among families and agencies, Our aim is to promote access to resources and responsible information for individuals of all ages who have, or are affected by autism, or related conditions. The Council will accomplish this by supporting statewide partnerships to collaborate on special projects, research and training.

Subject: NOT-MH-08-016

The Autism Council of Utah (ACU) has been working diligently since 2005 to establish an effective organization that can benefit Utah’s families and agencies. The ACU envelopes a coalition of families, educators, researchers, clinicians and government officials and has served in advisory and policy making roles in a variety of private and governmental initiatives including Utah’s interagency Utah Autism Initiative. Eight committees were designed to fulfill the mission of the Council. The committees cover adult services, recognition and events, government affairs, research, resources and awareness, services, school based issues, and training. Priorities are determined by committee input and are across all ages of ASD’s.

  • Early identification and intervention resources. Many families have had trouble getting the diagnosis at an early age. The “wait and see” approach denies toddlers of important early interventions. Once the diagnosis is made, autism specific resources can be hard to find. Parents need easily accessible information and resources.
  • Pre–school services for children with autism. There are over 300 children with autism on the Wasatch Front on a waiting list for pre–school services. These services are specific, individualized and intensive programs for autism. These programs need to be duplicated throughout the State with increased funding.
  • Autism specific programs for school aged individuals. Although special education is in place in public schools, more specific programs relating to autism need to be implemented. Programs relating to autism require small ratios and trained professionals making them costly for special education.
  • Service providers, agencies, and organizations servicing families affected by autism need to be properly trained.
  • Transition programs need to be in place for every major age transition; i.e. youth, young adults, and adults. Services should include education and training, and coordination of services provided by both private and State agencies to individuals with autism and their families.
  • Adult services including housing, supported employment, vocational rehabilitation, day programs, medical home, etc.
  • Respite for families of individuals with autism. Many caregivers are in great need of time to complete personal responsibilities and to get a rest from the tasks of caring for a disabled person. Respite can save a family from needing more extensive services.
  • Healthcare reform. Medicaid is a lifeline for some individuals and must be sustained and protected as an avenue for many with disabilities to access health care. It is important that autism screening, diagnosis and intervention services be available in health care plans.
  • Research must continue to determine future State plans regarding funding programs, and services needed to address the needs of individuals and families affected by autism.
From: [redacted personally identifying information]
Sent: Wednesday, September 17, 2008 9:08 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00093] NOT-MH-08-016
Attachments: RFI statement [redacted personally identifying information]

To whom it concerns,

please see the attached RFI submission as to what I believe to be a high priority for NIH autism research and funding.

thank you,

[redacted personally identifying information]
– –

The medical home is a model of delivering primary care that is accessible, continuous, comprehensive, family–centered, coordinated, compassionate, and culturally effective care. This model is supported by the ACP, AAFP, AOA and AAP. Previous research demonstrated that only a quarter of children with autism receive care meeting medical home standards compared to almost half of children with other special health care needs.1

Primary care clinics play an important role in the care of children with autism. On average, primary care providers care for at least ten patients with autism.2 Children with autism visit their physicians more frequently and have increased rates of co-morbid medical conditions, developmental delays, and mental health and behavioral concerns.3 Primary care providers are called on to guide parents through a growing and shifting array of medical sub–specialty care, psychopharmacologic and behavioral interventions, educational and rehabilitation therapies, and complementary and alternative medicine (CAM) treatments.4 A medical home can enhance the health and quality of life of children with special needs through comprehensive and coordinated care.5

Parents of children with autism report that their children are significantly less likely to have medical home care compared to parents of children with other special health care needs.1 In other studies, parents of children with autism expressed dissatisfaction with their physicians’ abilities to care for their children.6 Primary care models are often not adequately structured to provide comprehensive care for children with complex healthcare needs, such as those with autism, often leading to fragmented and inadequate care.7 In data from [redacted personally identifying information] national physician survey, primary care physicians reported that primary care for children with autism in the United States needs improvement. Additionally, physicians reported significantly lower self–perceived competency in caring for children with autism and a significantly greater desire for autism education, both compared to children with chronic and complex conditions and other neurodevelopmental disorders.8

I believe efforts should focus on innovative models of coordination and reimbursement for primary care of children with autism. Such models are needed, particularly to meet the complex needs and high medical costs of the vast number of children with autism. In another article [redacted personally identifying information], proposed solutions included care teams and specialty medical homes that collaborate with primary care physicians.9

  1. Brachlow AE, Ness KK, McPheeters ML, Gurney JG. Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children’s Health. Arch Pediatr Adolesc Med 2007;161(4):399–405.
  2. Dosreis S, Weiner CL, Johnson L, Newschaffer CJ. Autism spectrum disorder screening and management practices among general pediatric providers. J Dev Behav Pediatr 2006;27(;2 Suppl):S88–94.
  3. Gurney JG, McPheeters ML, Davis MM. Parental report of health conditions and health care use among children with and without autism: National Survey of Children's Health. Archives of Pediatric and Adolescent Medicine In Press: 2006.
  4. Myers SM, Johnson CP. Management of children with autism spectrum disorders. Pediatrics 2007;120(5):1162–82.
  5. American Academy of Pediatrics. Policy Statement: the medical home. Pediatrics 2002;110(1 Pt 1):184–6.
  6. Liptak GS, Orlando M, Yingling JT, Theurer-Kaufman KL, Malay DP, Tompkins LA, et al. Satisfaction with primary health care received by families of children with developmental disabilities. J Pediatr Health Care 2006;20(4):245-52.
  7. Cooley WC. Redefining primary pediatric care for children with special health care needs: the primary care medical home. Curr Opin Pediatr 2004;16(6):689–92.
  8. [redacted pending information] pending.
  9. Kelly A, Golnik A, Cady R. A Medical Home Center: Specializing in the Care of Children with Special Health Care Needs of High Intensity. Matern Child Health J 2007.
From: [redacted personally identifying information]
Sent: Wednesday, September 17, 2008 9:11 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00094] Autism RFI

I was asked to answer these questions by [redacted personally identifying information]

  • Can you tell us what specific challenges you faced as a high school student with ASD in relation to your education?
    I needed things explained concretely and they never were. As a result I often screwed up, and was blamed for it. I would have loved to get my work assigned at the beginning of the year, as in college, so I would have had time to complete it at my own pace.
  • What type of supports did you find the most helpful?
    I had no supports at all as I was undiagnosed at the time
  • What was the least helpful?
    Self-esteem-based education
  • What kind of supports do you wish you had or that you think would be helpful to a high school student with ASD?
    Teachers trained in the concept of being concrete. Teachers not blaming me for ANYTHING as I never intentionally broke the rules and lived in fear of being blamed every day. Getting work assigned at the beginning of the year, rather than every day.
  • .
  • What goals did you have about further education and a career when you were still in high school?
    I wanted to be a singer.
  • Did you have any concerns/fears about not being able to achieve these goals in relation to symptoms of your ASD?
    Never. I was largely unaware of the impact it would have on my employability.
  • Did having ASD influence your choices in regard to pursuing college and a career?
    No
  • How much education do you currently have?
    B.A.
  • What specific challenges have you had as a college student in relation to your ASD?
    I had no idea that networking was so important for finding work. I had heard it, but never believed it. I never talked to any professor outside of class and, as such, my education was much less useful in getting me a job.
  • Have you had any paid jobs, if so what were they?What difficulties did you experience with this job(s) and if so do you see any of the difficulties as being related to your ASD? The most recent application of this statement is when I worked at the hardware store and was blamed for following the letter of the law as opposed to the spirit of the law. I did as I was told, and no more, as I did not know what else needed doing. I also received literally no training, as my bosses assumed I would just pick up whatever knowledge I‘d need. This was the exact wrong way to work with me. I never revealed my symptoms as I expected they would find an excuse to fire me, and all of my co–workers would make fun of me. I also wanted to get through it without assistance which, in hindsight, was not the best idea. I eventually quit after my supervisor chewed me out for a variety of complaints I had done my best with. Working in corporate retail was easier as they don‘t care as much how good your work is, as long as they don‘t hear any complaints, and customers in large stores don‘t bother to complain as much as ones in small family–owned businesses. Working with autistic teenagers is still the best job I‘ve ever had and the one I was best at. There, my AS was a huge asset.
  • What are your career goals?
    Psychology research, followed by either teaching psych. or working with aspies on a psychological level.
  • Again, what if any concerns do you have about your choices due to your ASD?
    I am concerned about the autistic research being done currently, as I am opposed to much of it. I am also learning to network, which is very difficult for me as an aspie, despite its necessity to getting research jobs.
  • How do you see a vocational rehabilitation counselor as being able to assist someone with ASD achieve employment?
    Hopefully they can find places that will require intense focus, methodical work, and concrete analysis. They can probably help those of us whose parents didn't work at the career center figure out what‘s needed during interviews.
  • Are you familiar with what DVR refers to as supported employment or job coaching?
    Nope.
  • Are there specific types of jobs or careers that you think are well suited to persons with ASD?
    Science. Math. Computers. Video games. Architecture. Industrial Design. Working with autistic children or adults. Patent office. Banking. Data entry. Film or music criticism.
  • Do you have any thoughts about jobs that may not be well suited?
    Politics. Film. Marketing. Management. Business. Sports.
  • Is there any specific advice that you would like to give to our audience in regards to assisting someone with ASD achieve successful employment?
    Just like with anyone else, it‘s about pulling out their strengths, making them aware of their weaknesses, and then helping them find ways to overcome the obstacles they face in finding employment. These obstacles vary from person to person. But the most important thing I can say is that autistic people can apply their talents equally well to things typically considered “easy,” like sorting mail, or things considered “difficult,” like computer programming. If their interests suit the job, they will rise to the occasion and perform at either the low or high level the work requires.

I would also like to add that a really good idea is to create dorm-like community buildings for people with AS to run themselves. We could help one another, and hopefully learn a lot more about independence this way.

If you have any questions I would love to answer them.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 1:14 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00095] NOT-MH-08-016
Attachments: NOT-MH-08-016[redacted personally identifying information.rtf

To the member of the IACC:

My name is [redacted personally identifying information]. I am an Assistant Professor of Classics in [redacted personally identifying information] New Jersey and write a [redacted personally identifying information] weblog [redacted personally identifying information]. I am the mother of an 11–year–old autistic boy, [redacted personally identifying information].

I wish to submit the following statement about services for autistic individuals in response to the Request for Information (RFI): Priorities for the IACC Services Subcommittee for Autism Spectrum Disorders (ASD). I have submitted my statement both in the body of the email and as an attachment (RTF format).


Just as best practices for the education of autistic children have been developed and are being implemented today, with positive results (I know; my now 11–year–old autistic son, [redacted personally identifying information], benefited from intense Early Intervention and continues to thrive in a public school program specifically geared to autistic children), so must best practices for services for autistic individuals throughout the lifespan be created and implemented. Further, services and supports for autistic adults must be maintained with adequate financial resources and staff and carers need to be supported and properly trained.

Among the services and supports that are necessary to enable [redacted personally identifying information] and autistic individuals to attain their potential and to lead fulfilling lives that enable them to make a positive and real contribution to society:

  1. Job training and job support via job coaches; job opportunities from a variety of employers;
  2. Transition planning between the end of school and into a job or other program;
  3. Housing in the community and supported living environments;
  4. Continued education for disabled adults and community inclusion;
  5. Leisure and recreational activities and programs for disabled adults who may significant difficulties with social interaction, yet still desire and need such;
  6. Health care for autistic adults, including dental care and specialists able to understand the different ways in which autistic individuals communicate their physical and other needs;
  7. Assistance for individuals and their families with finances, guardianship and estate planning/ special needs trust planning.

Just as there is a “spectrum” of autism, so do autistic individuals have different and varying needs for services and supports. My son, for instance, will required support throughout his life and will not be able to live independently. Nonetheless, I am confident that he can and will work. It is further imperative that employers be given incentives to hire and keep autistic employees.

In providing these services, properly and professionally trained staff and therapists are essential. There have been numerous reports in the media about autistic children and autistic adults who are abused, injured, and– – –in some cases– – –killed by workers. All staff need to be provided with appropriate training in such areas as crisis management; they also need to receive sufficient instruction in understanding how to communicate with autistic adults who may have minimal or no language and impaired communication and social skills. And, staff need to be provided with consistent and regular training and support to assist them in their work.

Education does not stop when an autistic individual stops ending school at the age of 21. Many autistic children– – –my son included– – –are able to do and learn more as they get older and mature, and providing them with the best possible services and supports throughout the lifespan can make a huge and life–changing difference. We can‘t give up on our autistic individuals at any age; we can assist them in achieving their full potential and making a difference.


Thank you very much.

Sincerely,
[redacted personally identifying information]


[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 8:26 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00096] NOT-MH-08-016
Attachments: interagency for autism council.doc

Interagency Autism Coordinating Council,

attached is my letter of concerns for our children on the Autism spectrum. Thank you for letting us have a voice.

[redacted personally identifying information]

Stay up to date on your PC, the Web, and your mobile phone with Windows Live. See Now

September 18, 2008
RFI- NOT-MH-08-016

Interagency Autism Coordinating Committee,

I am writing about concerns that many families are having with wrap around services and the duties of the T.S.S. While we all know that their main responsibility is dealing with behaviors and transferring skills, I don’t understand why they are not allowed to help with bathroom duties. It is a fact that many of our children on the autism spectrum have potty training problems, wiping difficulties and dressing difficulties. Many are not potty trained until they are school aged. As our children reach beyond the “normal age” for potty training, many daycares and after school programs are refusing to deal with the bathroom issues of cleaning up accidents, wiping behinds and helping with dressing. Our children still need the TSS worker to be with our children in these programs but yet no one is willing to help with the bathroom issues. Going to the bathroom can certainly be a behavioral issue for our children and teaching a child the many steps to toileting; pulling down pants, wiping, flushing, re dressing, washing hands, are all part of transferring skills to the child, for a very important life skill.

My other concern about bathroom issues is the need for family bathrooms. Many of our child care providers are women who are caring for young teenagers and adult men. As a mom with a son on the spectrum, I can’t even let my son alone in a hallway so I can use the women’s bathroom myself. Family bathrooms need to be a priority!

My final issue is the fact that our schools are not training aides how to work effectively with a child on the spectrum. Aides are put in classrooms and are expected to do math, reading and writing programs with no training. Many programs have specific teaching methods and specific language but aides are just given books and told, “here, do this with the child”. They get no training of ABA and don’t understand concepts of first work and then preferred activity. Our aides are thrown into situations where they don’t understand different teaching methods and approaches to teaching our children. My son had 5 different aides (not including substitutes) in his classroom in one year.

Thank you for your time and consideration and giving families a voice.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 2:50 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00097] Azik Schwechte-[redacted personally identifying information].doc
Attachments: Azik Schwechte-[redacted personally identifying information].doc

Dr. Schwecter–

Attached please find the comments of the Utah Division of Services for People with Disabilities in regard to the request for information NOT–MH–08_016 issued by the NIMH Interagency Autism Coordinating Committee regarding service priorities for autism services.

Please do not hesitate to contact me if you have questions regarding the materials I herein furnish.

Best,

[redacted personally identifying information]

Utah Community Supports Waiver
Division of Services for People with Disabilities
Utah Department of Human Services

Azik Schwechter, Ph.D. Office of Autism Research Coordination in re: NOT-MH-08-016

Dear Dr. Schwechter,

The Utah Division of Services for People with Disabilities is Utah’s statutorily authorized agency for the provision of services to Utahns of all ages suffering from autism, and their families. The Division currently provides care for approximately 650 individuals diagnosed with an autism spectrum disorder through the services made available under Utah’s Medicaid §1915 (c) HCBS Utah Community Supports Waiver for Individuals with Intellectual Disabilities and Related Conditions (UCSW) while another 350 Utahns linger waiting to receive services.

Of note is the fact that, of those waiting to receive services, over 75% are children. Recent epidemiological studies conducted in Utah taking advantage of Utah’s superb Utah Registry of Autism and Developmental Disabilities (URADD ) have suggested an explosive increase in the incidence and prevalence of autism amongst children in Utah, and studies indicate that the incidence of autism amongst young males in Utah may be the highest in the nation.

The Division has maintained a keen interest in both the epidemiology as well as the evidence based practice research as it relates to autism and is very committed to exploring solutions to avert a looming public health crisis as young Utahns with autism mature beyond the years in which any hope can be held for successful remissive interventions, and they wind up taxing the resources of their families as well as the public health system for the remainder of their lives. We therefore, believe that efforts to develop an enhanced capacity for reliable and unhindered pediatric diagnoses of autism and related disorders along with an array of effective interventions in this critical period of 0–3 years of age during which studies suggest that hope can be held for remission to allow fully participative life spans, are imperative and desperately needed.

Recognizing that all may not succeed through the application of these efforts, the Division also believes in developing a system of care that enables braiding the funding for services for early intervention under Part C with school–based, longer term services under Part B and with §1915 HCBS funds to permit a comprehensive array of remissive, rehabilitative as well as habilitative services over the life spans of individuals suffering from this grave disorder. We also believe that providing support to families in their dedication and travails in sharing their lives with their loved ones suffering from autism is best served by family preservation efforts, particularly liberalized rules for the provision of vital respite and family preservation supports.

[redacted personally identifying information]

Our Mission is to Promote Opportunities and Provide Supports for Persons with Disabilities to Lead Self–Determined Lives
[redacted personally identifying information]
www.health.utah.gov.

From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 2:55 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00098] letter for the IACC re: NOT-MH-08-016
Attachments: Children with Special Health Care Needs 2RFI.pdf; Utah Autism Initiative 2RFI.pdf

Attached please find two letters for the IACC review.

The first letter is from the Children with Special Health care Needs Bureau at the Utah Department of Health.The second letter is from the Utah Autism Initiative Committee. I appreciate the opportunity to submit these letters.

Thank you,

[redacted personally identifying information]

September 17, 2008 Azik Schwechter, Ph.D Office of Autism Research Coordination in re: NOT-MH-08-016

[redacted personally identifying information] Azik Schwechter, Ph.D Office of Autism Research Coordination in re: NOR-MH-08-016

Dear Dr. AZik Schwechter,

Children with Autism Spectrum Disorders (ASD) and their families are facing limited services in Utah. The prevalence of ASD in Utah was the 3rd highest of the 14 states involved in the CDC study released in February of 2007, a prevalence of 1 in 133 children.

Children with Special Health Care Needs (CSHCN) is a bureau within the Utah Department of Health (UDOH). CSHCN sees one of its many roles as providing education and training to medical homes in the early recognition and appropriate referral for those with developmental delays and specifically, those with an ASD. Additionally, CSHCN houses Utah’s Early Intervention Program and offers clinics designed to establish the correct diagnosis so that appropriate services are received.

  • Early Intervention/Baby Watch is a federal and state funded program which provides in-home developmental services and care coordination to all moderately/severely delayed children in Utah from birth to age three. UDOH contracts with 15 local providers throughout Utah to provide early intervention services. As many children are not yet diagnosed with an ASD by age three, early intervention services often focus on functional delays rather than specific diagnoses. The number of children receiving early intervention services in Utah continues to grow. The monthly average case load served was 3600 in FY07. In FY08, the caseload increased by 10% to an average of 4000 per month. The limited funding presents serious challenges to meet the needs of children with ASD.
  • Child Developmental Clinic and our Satellite Clinics in 9 locations throughout Utah provide a multidiscipline, diagnostic evaluation and care coordination to children with developmental delays. In 2007, 16% of those seen in these clinics were diagnosed with an ASD. Once these children are diagnosed, they face limited interventions and services.
  • CSHCN recently received a three year HRSA grant for ASD. Building on the Utah State ASD Plan, we will be working closely with Utah State University and the University of Utah, using the expertise of our CSHCN Medical Home Program, to provide ASD training, education and support to medical and dental homes throughout Utah.

With continued flat funding of the MCH Block Grant, expanding our efforts to keep pace with the increasing population of children with ASD will be challenging.

[redacted personally identifying information]
www.health.utah.gov.

Dear Dr. Schwechter,

Utah Autism Initiative (UAI) is a multi–agency committee which was created by the Executive Director of the Utah Department of Health (UDOH) in early 2007. The tasks of the UAI is to improve awareness of ASD services in all major state agencies by identifying all current services for individuals with ASD funded with state and federal dollars, determine the gaps in these services and make recommendations to the legislature for future services.

Membership of the UAI consists of representatives from the UDOH, the Department of Human Services (DHS), and Utah State office of Education (USOE), Vocational Rehabilitation, Utah Registry for Autism and Developmental Disabilities (URADD), and parent advocates.

  • A matrix of these services was created. An abbreviated version has been included.
  • A subcommittee, chaired by the former Director of Utah’s Medicaid program, was formed to create fiscally responsible recommendations. Five recommendations were developed and presented to the UAI committee for prioritization. The top two recommendations were:
    • Funding for an ASD service/program expert and a family facilitator to oversee further efforts made within state agencies to both improve services and minimize the existing gaps in current services. This recommendation has been submitted as a building block to the Executive Director of the UDOH for consideration.
    • Development of a state plan to establish a system of care to permit the braiding of two of existing service delivery systems funded by Medicaid. This recommendation proposes using the existing infrastructure of public schools for after school skill building services, provided by the local mental health centers. For Medicaid enrollees, payment would come from Medicaid. For those not eligible for medicaid, a sliding fee schedule would be offered, which would be funded with state and other outside funding. The details of this recommendation would be one of the first tasks of the ASD service/program specialist listed above.

The creation of this UAI committee has been instrumental in establishing communication between our state agencies. This communication will be key as we move forward with our efforts to improve ASD services in Utah.

[redacted personally identifying information]

www.health.utah.gov.

From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 4:59 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00099] RFI- NOT-MH-08-016- IACC Priorities

On behalf of the Association of Regional Center Agencies (ARCA), I would like to thank you for the opportunity to provide input concerning the priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders. ARCA advocates and coordinates services on behalf of Californians with developmental disabilities through the 21 non–profit regional centers. Regional centers provide intake, assessment and purchase services for persons with mental retardation, epilepsy, cerebral palsy, autism and other similar disabilities. In 1971, autism was added to the state‘s Lanterman Developmental Disabilities Services Act. Eligibility through the regional center system includes persons with full spectrum autism, individuals with other forms of ASD are eligible for services if their needs constitute a substantial disability. The California regional center system serves approximately 200,000 persons as of December of 2007, of which almost 37,000, or 19% of the caseload, includes persons with autism.

In 1997, the Department of Developmental Services began its Autism Spectrum Disorders Initiative, which included the development of Best Practices for Designing and Delivery of Effective Programs for Persons with ASD; the establishment of the Director‘s Advisory Committee on ASD; the development of the ASD Best Practices Guidelines for Screening, Diagnosis, and Assessment; the launch ofthe ASD Learning Collaborative; and the completion of two reports on the incidence of autism in CA. In2005, the California Legislature passed Senate Concurrent Resolution 51, authorizing the California Legislative Blue Ribbon Commission on Autism to study and investigate issues related to autism. The Commission established a statewide forum and extensive stakeholder process and task force structure to obtain input from families and other key partners. The Commission‘s findings and recommendations serve as a roadmap to address significant gaps. The Commission completed its Report in September of 2007. The Commission‘s recommendations resulted in the introduction of legislation, including: early detection (SB 527); regional center–school district collaboration (SB 1475); ASD as a public health crisis (SB 1364); private health insurance coverage (SB 1563); public education (AB 2302 & AB 131); housing (SB 1175); and police officer training (SB 1532). Assembly Bill 2302, which enables an expanded number of qualified teachers to educate students with ASD, has been signed into law and the other bills have been passed by the legislature and are awaiting action by the Governor.

California has been serving large numbers of individuals with autism for some time, and many of these individuals have already, or are in the process of, transitioning out of the school system and into the adult service system. With the increasing numbers of young adults and adults with autism there has been little research or coordinated efforts to identify and implement successful strategies to support these young adults as they transition into adulthood. ARCA recommends that the IACC include in their priorities a focus on identifying and meeting the changing needs of adults with autism throughout their lifespan.

Thank you for the opportunity to comment, ARCA would like to offer its support and assistance to the IACC as it carries out its mission.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 5:27 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00100] NOT-MH-08-016 RFI Identifier
Importance: High
Expires: Tuesday, March 17, 2009, 2:00 AM
Attachments: UPC Response to Federal RFI.pdf

Attached is our response to the RFI: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD).
Notice Number: NOT–MH–08–016
Response Due Date: September 19, 2008
Issued by the National Institute of Mental Health (NIMH)

Thank you,

[redacted personally identifying information]
Utah Parent Center
[redacted personally identifying information]

CONFIDENTIAL
This Utah Parent Center message is meant for the exclusive use of the intended recipient and may contain information that is privileged, confidential or legally exempt from disclosure. If you have received this message in error, please notify the sender immediately by e–mail or by telephone at [redacted personally identifying information] and delete message.

[redacted personally identifying information] Website: www.utahparentcenter.org NOT-MH-08-016 Azik Schwechter, Ph.D., Office of Autism Research Coordination

Dear Dr. Schwechter, Children, families, schools, and communities across Utah are being impacted significantly by the increasing number of individuals being diagnosed with challenges related to autism spectrum disorders (ASD). Statistically, the incidence of ASD in Utah is the third highest in the nation with 1 in 133 children. Within this statistic, more than 1 in 79 Utah boys born in 1994 have an ASD, a rate of incidence amongst young males that may be the highest in the nation. Autism is the fastest-growing developmental disability in Utah with a rate 20 times higher than 20 years ago reflecting an average annual growth rate of 20% from 1993 to 2003. Utah has the highest rate of autism with loss of skills in the nation. These data are staggering.

Included in the categories of disability served by the Utah Parent Center (UPC or Center) are Autism Spectrum Disorders (ASD). In December of 2003, the UPC established the Autism Information Resources at the Utah Parent Center to insure that a resource related to ASD would be available to the community. Over the period of the past four years, the number of calls to the UPC for assistance has been 3 or 4 to 1 from individuals requesting information, training or support related to individuals with autism. These calls reflect complex issues for families living with autism and the challenges they present to service systems as the incidence of autism has increased.

A child’s autism diagnosis affects every member of the family in different ways. Parents must now place their primary focus on helping their child with ASD. The needs of the child with ASD complicate familial relationships putting increased strain on the marriage, with siblings, on work, finances, as well as personal relationships and responsibilities. Parents now have to shift much of their resources, time, and money towards providing treatment and interventions and to the coordination of medical, educational, and community supports for their child, to the exclusion of other priorities.

Services and supports to address the needs described are essential to preserve the viability of families to insure the success and well–being of individuals with autism. Utah parents/families believe that effective, research–based early intervention services are vital and urgently needed. We also believe in the importance of long term services and supports provided through a coordinated, comprehensive array of services to address life–long needs of individuals with ASD and their caregivers. Family preservation initiatives, parent training, information, supports, and the availability of respite services are critically needed.

The UPC is a private, nonprofit, parent-run organization with more than 25 years of experience in providing effective statewide parent–to–parent and family–to–family information, referral, training, and peer support to parents of children and youth with disabilities. The UPC is Utah’s federally funded Parent Training and Information (PTI) Center under grant #H328M070035 from the U.S. Dept. of Education, OSEP and also receives federal funding from HRSA/MCH Bureau under grant #H84MC07996 to support Family Professional Partnerships for CSHCN.

[redacted personally identifying information]
Utah Parent Center
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 8:33 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00101] NOT-MH-08-016
Attachments: NOT-MHI-08-016.doc

NOT–MHI–08–016

The following two issues should be examined.

  1. Adult Diagnosis.
    As direct care workers will tell you, older adults living in congregate care often exhibit autistic traits, regardless of their diagnosis of record. It is possible that they have acquired autistic mannerisms from peers living in the same environment, or long term medication use has affected speech and general affect, but it is also possible that they were misdiagnosed, or undiagnosed many years ago, and the mis–diagnosis has remained. Adults who are in their late 30?s now would have likely been diagnosed as children before DSM III, which included the first diagnosis of ASD, was published. In practice once a diagnosis is made, it rarely changes. Group home providers are not motivated to re-examine a diagnosis, and for many older adults there are no advocates.
    An adaptation of ADOS or similar instrument, designed for working with low functioning individuals with ASD could be used to re–visit the diagnosis of a cross–section of older adults living in mixed diagnosis congregate care facilities. Such a study would require people trained in the use of such an instrument, or re–trained to work with adults, and would require access to the older population, most of whom have relatives or agencies as guardians.Such a study might shed light on the prevalence of low functioning ASD in the older population, and give us insight in to how to provide more appropriate treatments and environments, and increase the well being of the individuals themselves. It would also shed light on the prevalence of narrowly diagnosed ASD, and how the apparent prevalence may have varied due to diagnostic substitution, lack of initial diagnostic criteria for ASD, and changes in professional knowledge.
  2. Klinefelter Syndrome. (KS)
    Young men diagnosed with KS show personality traits such as shyness, social awkwardness and difficulty with language. Before being correctly diagnosed many had been labeled as having high functioning ASD or Asperger? s. If suspected, KS is readily diagnosable, and there are available treatments, but it may easily remain undiagnosed in young men, especially if presenting initially with socialization troubles. A study of a sample of young men diagnosed with HF ASD or AS who are then screened for KS might ? eliminate? a cause of ASD.

[redacted personally identifying information]
Parent Advocate, graduate student at [redacted personally identifying information].

From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 10:40 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00102] IACC RFI comments
Attachments: IACC 9.19.doc

The below one–page comments are attached as well.

Dear Committee members: Thank you for this opportunity to submit these comments to you. I am the parent of a 9–year–old with an autism spectrum diagnosis, as well as a university professor who has developed a subspecialty in disability studies. I am writing as a full-fledged supporter of the Autistic Self–Advocacy Network and its positions. I am writing to ask you to reverse the trend of skewing funding toward genetic research and research into treatments and interventions. I believe the IACC‘s top priority needs to be earmarking funds for research into services and supports instead.

I would like to see dramatically increased funding for research into all of the main areas of supports and services identified by ASAN: education, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.

First and foremost, I would like to see more studies that assess current levels of supports and services within the public education system, particularly where implementation is concerned. My second biggest priority is research that will help health care professionals interact knowledgeably with autistic patients/ clients.

Next, I would like to see more funding for research that will help adults on the spectrum realize their right to life, liberty, and the pursuit of happiness. Research into housing alternatives (including cost—effectiveness measures), transition options, and employment opportunities (including components such as accommodations, training, and career counseling–but also research that will help employers interact knowledgeably with autistic employees) must be pursued more substantially if any of these adults are to be able to live as full and fulfilling a life as they wish.

I would further like to see more community–based participatory research geared towards community inclusion and research that will help professionals such law enforcement officers and first responders interact knowledgeably with autistic people. I would further like to see more community–based participatory research focused upon older adults, who are often vulnerable to health and housing crises. Finally, I would like to see this emphasis on a comprehensive research agenda across the lifespan also include studies that contribute to our understanding of how issues associated with guardianship, estate planning, and finances impact the ability of autistic adults to live a long and safe life.

In conclusion, please help our country avoid the looming social disaster that awaits if we do not begin to address the needs of all Americans with autism spectrum diagnoses. Community–based participatory research that illuminates the delivery of services and supports is much more urgently needed than genetic research and research into treatments and interventions. Thank you for your time and consideration.

Sincerely,

[redacted personally identifying information]

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From: [redacted personally identifying information]
Sent: Thursday, September 18, 2008 11:15 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00103] Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD)
Attachments: ASD questions and issues.odt

Attached you will find a complied response from the the Capital Clubhouse in [redacted personally identifying information] WA. The 1st page is our agreed upon responses, a list of issues that we consider to be high priority for our ASD affected members and their families. The other pages which I will let you decide whether to read or not is a personal testimony from the member that compiled the answers, outlining her experiences with ASD and the effects it has had on both her own life and that of her most severely affected son. The members all agreed that for illustration purposes this kind of testimony would be an invaluable tool for your committee.

High Priority questions and issues for individuals with ASD and their families

A Response From Capital Clubhouse [redacted personally identifying information]

*RESEARCH–ASD numbers are soaring and comparatively speaking the research being done on techniques and therapies to help Autistics recover is pathetic. ASD may not be life threatening, but it severely impacts the quality of life for those affected and their families. Too many times those who are affected are either exploited for national recognition or money, or simply left in the dust and ignored. Therefore, it is most distressing that despite the evidence that recovery or prevention is possible, the few facilities that are doing the research that could lead to a greater mainstream acceptance of the techniques that work are so crippled by lack of funding. The answers are out there–let’s make the road to recovery accessible to more people who need answers and find the answers that are still missing!

*AWARENESS–The ignorance of the general public (as well as some “providers”) of the complexities of the ASD community and its issues is staggering. Limited awareness of what ASD is and the wide range of individuals who qualify as being on the spectrum has led to stereotypes that are so ingrained in our society that people don’t even realize that that the stereotype is a stereotype, which is especially frustrating when the people who are judging by that stereotype are professionals who are supposed to be supplying a helpful service or helping a family or individual to locate a service or even supposed to be helping reach a diagnosis. It makes the difficult job of getting a diagnosis, helpful services, or needed resources even harder for a community that is generally stressed nearly to the breaking point to begin with because of the difficulties caused by the disorder itself.

In addition, there needs to be more awareness in the professional arena of what is actually available to people with ASD and their families–There is nothing more frustrating than to find out too late about a helpful service or resource that hasn’t been suggested to you because the person you were relying on to help you find such resources (social worker, case manager, etc.) didn’t know about it!

*RECOVERY SUPPORT–Recovery is a long and difficult lifelong road for any diagnosis. Support programs can be a lifesaver. The availability of funds for programs that help individuals with ASD and their families through emotional support, education, and assistance with locating resources and services is an important piece of making recovery possible and sustainable (i.e.: Clubhouses, Family Support groups like TACA, and [redacted personally identifying information] social/therapeutic programs like [redacted personally identifying information] Wyatt’s House Foundation or Parent to Parent). The catch is that these programs really need to be set up to be run by consumers and their families, otherwise you run the risk of having well meaning people with no personal experience with the spectrum trying to run things based on the stereotype and out-dated ideals rather than the reality (“Autism Speaks” being on one of the most recognized and published offenders).

*MEDICAL–For those seeking access to the road to recovery from ASD, this is a HUGE issue. It’s often a huge fight to get a correct diagnosis as too many doctors are quick to jump to the easy answer and stop there rather than going through the steps to get it right. Once a diagnosis is reached, there is an overwhelming and counter productive tendency of many doctors to then turn on the parents and try to find a way to blame the disorder on them whether there is evidence of actual misdeeds on their part or not, which can lead to legal issues that only complicate the issue. Often this is the beginning of issues with agencies such as Child Protective Services who tend to exasperate the issue rather than helping anything. The tendency is to ignore the fact that the only productive reason to look at the cause of the autism symptoms in the individual is to help locate the most effective treatment. Instead emphasis is too heavily laid on what should have been done to prevent the disorder–which doesn’t help the patient at all. But that is just the beginning, largely because of the lack of research and the refusal of mainstream doctors to even discuss many of the treatments out there. A diagnosis is just the first step in a long uphill struggle to find a treatment that is effective for the individual in question, and find a way to be able to afford to make that treatment happen. There is no shortage of mainstream doctors that refuse to acknowledge and /or refer patients to newer, but more effective treatments, and insurance companies who refuse to help pay for these treatments when the patients or families find them. The financial burden of trying to help these individuals recover from ASD without the support of their doctors and medical insurance providers is regrettably more than many individuals and families can take.

*FUTURE IMPACT–A MAJOR area of concern for this community is what happens to an individual with ASD after the caregivers that they have depended on all their lives pass away or for whatever reason are unable to continue to provide care. If recovery can be achieved and sustained, and then a support system can be established to help the individual stay maintained, the future is something that can be managed, hopefully with minimal difficulty. Unfortunately, all too often individuals with ASD never reach a level of recovery that allows this end result and with no real idea how to manage or who to turn to for support they end up dumped unceremoniously into group homes, mental hospitals, or prisons where half–hearted attempts (at best) are made to help them maintain the status quo or they slip through the cracks and end up homeless and alone.

*A Personal Testimony

Some of the clubhouse members who I conferred with in compiling this felt it would be more effective to share a personal story that touched on these issues in order to illustrate their effects and since I was already putting together this compiled response I volunteered to add my own story.

I am self–diagnosed and community confirmed individual with Asperger–s Syndrome. I am one of the lucky individuals that was able to learn to deal with my disorder with limited amounts of external assistance, though I do still have to work hard at a lot of social and physical things that many typical people don’t even think about. My symptoms are relatively mild compared to the stereo–typical “Aspie’ and as such were never linked together to earn me an official diagnosis. My symptoms were always attributed to other things–my social ineptitude was attributed to the fact that I had a bladder disorder and was “shy” (when in reality, I really didn’t care what anyone thought about it and was actually pretty confused as to why anyone thought I should care), my inability to ever really know what to do with my hands I funneled into activities that kept my hands busy so that it generally went unnoticed, my unusual speech pattern was explained away because it was still clear and understandable and closely resembled my father’s. I never really felt like I belonged anywhere except at home and even that seemed questionable sometimes.

When I grew up and got married I ended up with a wonderful man that I love with all my heart who shares many of my symptoms though I don’t think I will ever get him to admit that there may be a diagnosis for him as well. We were drawn to each other because we do understand each other so well and because our similarities made us both feel as though we belonged together. As with me, when we started having kids and they started showing symptoms of ASD, we recognized the things they were doing from our own childhoods and gave it very little thought as that seemed “normal” to us. It wasn’t until our youngest was born that we started taking note of any of our children’s behaviors.

My youngest son, who I will refer to by his nickname, [redacted personally identifying information], is by far the most severely effected of my children, but the onset of the symptoms that actually were a problem were slow in presenting themselves. The symptoms that pushed me to begin looking for answers didn’t begin until he was almost 2 years old. Over the course of about 6 months, [redacted personally identifying information] went from a talkative, active, and developmentally above average 18 month old to an active, physically typical, but almost totally non–verbal 2 year old with an obsession with taking off on his own, which needless to say is a very scary combination. When I first went to his regular doctor with my concerns, she was initially less than concerned, telling me that it was probably just a phase and that I should just take a watch and see approach for a few months. Then, CPS got involved because he had began letting himself out of the house and had been found by a neighbor who not knowing us had called the police. Within four months, I went back to the doctor because I had seen NO improvement.

The doctor’s initial reaction was checking his hearing–maybe he had some hearing loss from the ear infection that he had over the past winter. So I scheduled the next possible appointment I could with a local audiologist–2 months out. [redacted personally identifying information] was far from cooperative with the testing, but even so we were able to determine that his hearing was at least in the lower end of the normal range. At this point, very frustrated and worried, I called my mother to vent and brainstorm. My mother, who had just started working as an assistant to the speech pathologist for the school district that I grew up in, told me to call my local school district and ask about an early childhood assessment. After about a month of phone tag and dead ends I was finally connected with [redacted personally identifying information] a local parent support group that jointly runs the early childhood program in the [redacted personally identifying information] area. They sent a representative out to do a quick initial consultation and assessment and within a couple of weeks [redacted personally identifying information] was enrolled in the local birth to 3yr program, which provided evaluations of his current development level, regular OT and Speech therapy sessions, a weekly classroom style playgroup, and a weekly parent support group meeting.

I returned to the regular Dr. to figure out the next step and she suggested that we wait and see how the therapies went. We went through the school year in the birth to 3yr program with limited success managing to get his vocabulary up to a whole 15 words. The progress was slow and limited at best. Meanwhile, my frustration and the stress of trying to balance [redacted personally identifying information]’s needs with those of my other children (at this point ages 9, 8 and 4) and the demands of trying to run my household had driven me into a constant state of depression, and I began doing individual counseling sessions with [redacted personally identifying information]. My husband, who was working a dead end, barely more than minimum wage job for often more than 50 hr/wk just to keep our family’s bills paid had little time and energy to help and it often seemed that the counseling that was more trouble than it was worth because it was just one more thing on my list to juggle.

Come time for [redacted personally identifying information]'s 3yr check up there was very little progress to report to her. At this point, his doctor finally suggested that we take [redacted personally identifying information] to a Neurologist. Our consultation with this specialist was disappointing. Several of the parents from the parent support group that I was still attending had told me that they thought that [redacted personally identifying information] was on the ASD spectrum, so I brought this possibility up during this appointment and was told that the neurologist did not see enough indicators to warrant that diagnosis. So, [redacted personally identifying information] was subjected to a series of blood tests and a (sedated) CAT scan. All of the blood work came back normal–by this time I was beginning to hate the word “normal”. But when the results of the CAT scan came back, we were told that there were indicators of seizure activity and the neurologist wanted to do an EEG as a follow–up.

So, we did an EEG (non-sedated)–it was a horrific experience. [redacted personally identifying information] was not cooperative at all, and I basically had to wrap him up like a swaddled baby, arms help fast to his sides by the blanket, and do my best to hold him as still as possible for nearly an hour. My arms and shoulders ached for nearly a week afterward. When the results came back we were once again disappointed-the results were inconclusive and now the neurologist wanted to do a 48 hr videotaped EEG. We talked him down to a 24 hr session, but agreed to give it a try. Meanwhile, [redacted personally identifying information]’s symptoms were getting worse and it was becoming harder and harder to keep him safe, because while little to no progress was being made on his ability to communicate, he was still learning to manipulate his environment (doors, windows, locks, etc.) like a typically developing child and he was beginning to master the fine art of diversion in order to divert my attention so that he could take off unnoticed. For example, he would go down to my bedroom while I was talking to one of his siblings in the living room, pull things off of the hangers in my closet, spread my make-up around the room and tear my bed apart and when I heard the noise he was making and came in to scold him, he would watch to make sure that I was going to clean the mess up and then run down the hall and use the furniture to defeat the locks on the front door and take off.

As a result, this time period was marked by more visits from CPS workers who would come in, take a look at the safety measures that we had instated in view of his latest escape and then say “You need to do more.” And we would respond, “What should we try?” But the only responses we ever got to that question was either a blank stare and a shrug, or (and this one really made me angry) one social worker told me that I should ignore my other kids and focus on [redacted personally identifying information] 24 hrs a day.

It was shortly after one of these visits, about 1 month before the 24 hr EEG that I found myself talking to my mother in law and realized that with everything that was going on, we had somehow neglected to inform her of what was going on with [redacted personally identifying information], not too surprising as I have a better relationship with her than my husband does and I rarely had time to talk to anyone on the phone. So, I gave her a quick summary of the situation, [redacted personally identifying information]’s behaviors, and the leading theories on what was going on with him on a medical level. To my surprise she then informed me that her mother’s sister had been an epileptic and that she must have forgotten to tell my husband about it because that particular aunt had died of complications caused by one of her seizures before he had been born. So, now we had more probable reason to believe that epilepsy was indeed the culprit for [redacted personally identifying information]. We went into the 24 hr EEG hopeful that we were finally on the right track for a diagnosis.

By now, [redacted personally identifying information] was 3 yrs old and being transferred from the birth to 3 yr program into a developmental, inclusion focused half–day preschool. But he still was not talking anywhere near the level where he had been at age 18 months. Shortly after the school year began we went in to get the results of the 24 hr EEG-once again the results were inconclusive, but the neurologist finally believed that he had enough indicators to recommend that [redacted personally identifying information] be screened for ASD by a Behavioralist. He referred us to one that he was associated with in [redacted personally identifying information].

So, I called the recommended office and was informed by a helpful receptionist that yes, she could send me the paperwork needed to even get an appointment with the doctor, but it would take a minimum of 3 months after they received the paperwork for them to process the request, and then, IF he was then accepted as a patient they would contact us to set up an appointment, which would be a minimum of 3 months out from THAT point, so even if we were able to return the paperwork immediately, we were looking at approximately 6 months minimum before we could get him seen. That, of course, didn’t happen. We received the packet of paperwork which actually consisted of 2 separate packets, one to be filled out by his dad and I and one to be filled out by his school. The packet to be filled out by us was done within a week and consisted mostly of questions about his medical and family history and other vital statistics. The packet we sent to the school, asking for information on common classroom behavior and recent assessment levels, was not returned for over 2 months, but we finally got it back and sent it in. Four months after sending the paperwork in, I got impatient and called the Behavioralist’s office again. Turned out they hadn’t called us yet, because they had had to contact [redacted personally identifying information]’s school again because the school’s part of the paperwork was incomplete and they were still waiting for the missing pieces of that part of the paperwork! There was nothing that I could do but wait.

[redacted personally identifying information] finished the school year and a decision was made to move him for his second year of preschool to a different school in the district into a program that was more intensive, all day/4days/wk, with more staff coverage and less students and where all of the kids had similar communication issues and so that communication was able to be a core part of the core classroom curriculum. Half–way through the summer, my husband lost his job and we were forced to apply for welfare in order to pay our bills while he searched for a new job. As part of the program, all the adults in the household are generally expected to participate in full time work search activities, but with everything that was going on I asked for special consideration due to the extra care required by [redacted personally identifying information]’s problems. In consideration of the request, a visiting nurse from the health department was sent to our home to assess the situation. During her visit was the very first time that DDD services were ever even mentioned to me as a possible resource. The visiting nurse spent 2 hours with us and in her report to the welfare department she recommended that I not be required to participate in job search at all until the school year began, and then only at a maximum of 20 hrs/wk.

One week before the next school year began, we finally received a call from the Behavioralist’s office confirming that [redacted personally identifying information]had been accepted as a patient, but the earliest that they could see him was the end of November–over one year after I first contacted them. At about the same time I sent in the paperwork for DDD.

In early November, [redacted personally identifying information] got away from us again and CPS decided that they needed to get more aggressively involved. They removed him from school and placed him in a foster home in a small outlying area town in the county. My husband and I fought the decision and were able to successfully argue that CPS had done nothing to this point to aid our family in anyway in order to prevent his removal. (During the hearing the social worker admitted that she had not suggested DDD services to us during any of her previous visits with our family because she had not been aware of the program.) He was returned to us 2 wks later–just in time for the long awaited appointment with the Behavioralist. [redacted personally identifying information] was diagnosed with Autism during that 1st visit, prescribed a nightly dose of melatonin to assist with regulating his sleeping pattern, which had been minimal since his birth, and it was explained to us that while Autism would now be considered to be his primary diagnosis, we should continue the exploration of the epilepsy aspect as that was a likely culprit of his regressions, especially with a family history of the seizure disorder.

It wasn’t until after his diagnosis that I began to do research into ASD and began to realize that my entire immediate family (myself, my husband, and our 4 children) all had symptoms of the spectrum and that many of the things that we had always accepted as normal behavior were actually warning signs. We began working with an Autism specialist that one of our lawyers located for us, [redacted personally identifying information], who we were really excited about because of her personal experiences as not only a mother of an Autistic child but also the sister and main caregiver of an adult Autistic man and a licensed speech pathologist. She assisted us with setting up schedules in our household that relieved some of the strain on me and increased the available supervision of [redacted personally identifying information] during the most difficult hours of our normal day, trained myself, my husband, some close friends, my mother and my other children in the basic principals of the ABA program that she was using with him and oversaw a program of constant ABA therapy sessions on the evenings and weekends one of which she ran herself. Under this intensive program, combined with his return to his full day program at school, he finally began to make some real, measurable progress for the first time in years. In January, CPS dropped the case altogether. Unfortunately, that’s when things began to fall apart.

We were having trouble coming up with the money to pay [redacted personally identifying information], a bill of over $300 per month which amounted to about 1/5 of my husband’s wages. So [redacted personally identifying information] had to, for financial reasons of her own, stop working with us (we were on a waiting list to get assistance with this bill through DDD, but the list is years long). Without [redacted personally identifying information] help, we began to have scheduling issues and then my husband’s work schedule got changed so that he was no longer available to help me on the weekends and I couldn’t get any other adult coverage, so I began relying on my older children (now 12, 11 and 7) to help me out with watching him while I cooked meals on the weekends, because I had no one else to turn to and they were willing to help. I insisted on them working as a team for this purpose in the hopes that such teamwork would prevent any one child from being left responsible for [redacted personally identifying information] and prayed that it would be enough since I really saw no other recourse. Unfortunately, I was wrong, and in early March he got away again, this time being found 2 blocks from our home on the other side of a busy, 4 lane street at the McDonald’s. CPS jumped at the chance to get involved. Once again [redacted personally identifying information] was removed from our home and his school and he almost immediately began to regress. Within 2 months, his verbal skills were once again almost non–existent and he began to lose his social skills as well. The longer he remained in foster care the more withdrawn he became–which is one common symptom of Autism that he had never really displayed before.

To date, [redacted personally identifying information] is still in foster care and we are working to get CPS to agree to a reunification plan. But the worst part is that the small window of opportunity, according to most experts on the subject, to actually make significant progress toward developing his verbal skills is quickly disappearing and the agency that is supposed to be protecting his interests doesn’t seem to care. What is my son’s future going to look like? I am frightened to even consider the possibilities. I just pray that somehow we will be able to get him home and making progress again before it’s too late.

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 6:41 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00104] Comment on IACC Talking Points

Health and Medical Services:

I would like more understanding and education of doctors/anesthesiologists regarding the necessity of anesthesia for ‘routine’ medical procedures that people not on the spectrum are not given. My 5 year–old son has HFA and multiple medical issues. He has a GJ feeding tube which must be changed a couple of times each year with the aid of x–ray. Due to his sensory difficulties and anxiety, he must be sedated for the tube replacement. The last time his tube was changed, the radiologist heavily questioned the need for anesthesia. He understood only after I explained in detail the trauma and after–effects of what my son‘s experience was without aid of sedation.

Older Adults

I am a self–diagnosed person with AS, upon the realization of my son‘s HFA diagnosis. I am old enough and have enough life experience to ‘play normal” when it is needed, but I still have deficits in verbal comprehension skills, and the like. We have community support groups for our kids on the spectrum, but find it hard to find support groups offline for the parents who invariably are affected by their neurologic status. We need more parent groups focused on how to cope with their own ASD.

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 8:27 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00105] NOT-MH-08-016

[redacted personally identifying information]

I am a family member of an autistic person and someone who identifies with the disability community. I am writing in response to the Request for Information regarding priorities for IACC‘s Services Subcommittee for Autism Spectrum Disorders.

[redacted personally identifying information] the National Youth Leadership Network, a national youth–led, youth–run, non–profit organization dedicated to the advancement of young disabled people. Again and again, our autistic members have expressed a need for more development and information around the area of youth transition. Many young people finish high school level programs and age out of services, leaving them with no where to turn. We have also found that many of our young people are interested in attending post-secondary educational institutions but are not give enough information or resources to allow them to transition into this environment.

Members of our organization have also stressed to me the importance of research into housing alternatives, specifically those with the spirit of the Community Choice Act, a bill that promotes community–living for disabled people able and interested in living in the community. Recent cost–benefit analyses have illustrated that community–supported living is cost effective. In addition to the high number of autistic people living on the streets, many our members have friends and community members who are living in residential centers and desire to live in the community. This is an issue important to many of us.

It is my hope that the committee takes public comments from autistic people with great authority as they have the lived experience and are the experts in determining these priorities. I can be contacted at [redacted personally identifying information] or [redacted personally identifying information] if there is a need for more information.

Submitted respectfully on September 13, 2008, [redacted personally identifying information]

– –

[redacted personally identifying information]

“Sometimes, I feel discriminated against, but it does not make me angry. It merely astonishes me. How can any deny themselves the pleasure of my company? It‘s beyond me.”

– Zora Neale Hurston

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:10 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00106] Autism Services

Hello– –

I want to comment on services for the autistic community. I am an autistic college student in a long-term relationship with another autistic college student. I thank you for providing the opportunity to voice our thoughts.

In terms of research, I would like to see more studies done which explore practical concerns such as how we learn best, what kinds of supports and technology help us to live with less anxiety, etc. I think it‘s especially important that autistic adults be part of the process in deciding which research projects to fund, and that more research be specifically focused on autistic adults. Too often in the autism world, it feels as though we don't exist once we get past the age of 12 or so. A lot of medical and genetic research is not as useful, in my opinion, as the kind of research I just talked about.

I also think that it‘s very, very important to pay more attention to what services autistic adults need. I‘d like to see more done so that assistive communication devices and sensory integration supports (such as weighted blankets) are more readily available to all autistic people, regardless of age or socio–economic status. We need more services to help us with employment. So many of us are unemployed or struggle to find appropriate work, when we are in fact very capable. More assistance with regards to housing, education, mental health, and transitional supports are also very important. Thank you.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:08 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00107] RFI Identifier NOT-MH-08-016
Attachments:: MX-7000N_20080919_092154.pdf

Attached is the response of Family Network on Disabilities of Florida to Request For Information.

Thank you.

[redacted personally identifying information]
Family Network on Disabilities of Florida, Inc.
[redacted personally identifying information]
www.fndfl.org

[redacted personally identifying information] website: www.fndfl.org [redacted personally identifying information] Response of Family Network on Disabilities of Florida to Request For Information

Family Network on Disabilities of Florida has held Parent Training and Information center grants (PTI’s) through the U.S. Department of Education for more than 20 years. The issues we see as being most important in this area are:

  1. Addressing issues of racial and ethnic disparity in the diagnosis and/or treatment of autism. Developing neutral tools and educating medical and education professionals about this issue is very much needed. While overidentification of minority children with disabilities is an issue of great concern, misidentification of minority children with the wrong disability – or failure to properly identify them in the first place as having a disability – is also of great concern.
  2. Access to providers, including in rural areas. Effective strategies to improve access to providers of services to those on the autism spectrum is crucial. In many areas of the country, providers, including medical professionals, simply are not available. Families are forced to travel for many hours to obtain these services, if they can obtain them at all. The use of e–medicine and other promising strategies should be fully explored. Even if providers are available, their services may be priced out of the range of many families.
  3. Independent Living. Inclusion of Independent Living concepts and principles and all this entails as developed in the disability community over the last several decades is vital for the success of the activities envisioned by the draft Strategic Plan. This is particularly true with regard to adults and the two community-based interventions specified under “Long Term Objectives” on page 25 of the Draft Strategic Plan dated August 15, 2008.
  4. Outreach to adults with autism and their families. While we recognize the importance and promise of early intervention, we feel that it is crucial that adults on the autism spectrum and their families not be left behind. Many are unaware of the research, developments, and advancements in understanding autism spectrum disorders that have been made over the last 10 – 15 years. Reaching out to them in effective ways with this information to allow them to reach informed decisions regarding their future is very important, in our opinion.
  5. Inclusion of self-advocates. Meaningful and effective inclusion of self–advocates on the autism spectrum is essential in all of the activities and proposed research. We are happy to see the inclusion of a self–advocate on the IACC. We urge that, throughout the contemplated activities suggested by the Strategic Plan, self–advocates be involved in numbers and ways that insure that their input is at the core of all results.
From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:11 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00108] Missouri

NOT–MH–08–016

In Missouri we are needing increased educational services for children with autism and other mental health disorders. There are so many children who get moved to homebound services due to their mental health condition. I would rather see these children get services in special schools if they are not able to be maintained in the regular school based supports. I know there are districts who are trying to make things better but there is a general lack of services

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:15 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00109] Missouri
Attachments:: MX-7000N_20080919_102005.pdf

Attached is the response of [redacted personally identifying information] Member, Family Network [redacted personally identifying information] to Request For Information.

Thank you.

[redacted personally identifying information]
Family Network on Disabilities of Florida, Inc.
[redacted personally identifying information]
www.fndfl.org

Family Network on Disabilities of Florida, Inc. [redacted personally identifying information] website: www.fndfl.org [redacted personally identifying information] Response of [redacted personally identifying information] Member, [redacted personally identifying information]

Education Concerns:

  1. Lack of understanding about what autism Is– teachers, staff, students.
  2. Teachers teaching children with Autism without any specific training.
  3. Children not being taught to their potential. Just because they are not capable in one area does not mean they are lacking in every area.
  4. Discipline Issues – restraints, seclusion, etc.
  5. Develop a peer mentoring program. Autism is also a social disorder in which children have issues socializing, which is a major component of education

Medical Concerns:

  1. Late diagnosis. Pediatricians should be taught that “wait and see” is a bad approach to take. Many parents will tell you their pediatrician delayed referrals.
  2. Autism rates have sky rocketed in the last decade; yet, many pediatricians still have the mind set from 20 years ago. Early diagnosis and intervention is key to a child meeting his/her full potential.
  3. I would like to see pediatricians look into “root causes” of common medical symptoms of autism, such as diarrhea, constipation, random fevers, etc. Many of these things are just said to be symptoms of autism, but are treatable medical conditions.
  4. Refresher courses in ASD symptoms would benefit Pediatricians and Family Practice Medical Workers alike. It is important to include Nurse Practitioners, since they are the ones who typically spend the most time with the child.

Early Intervention Concerns:

  1. Lack of Coverage through insurance coverage
  2. Not enough providers for therapies
  3. Coverage for multiple therapies. Every child responds differently to different treatment – some will need 40 hours of ABA and some may need PT, OT, ST at a higher rate.
From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:17 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00110] RFI Identifier NOT-MH-08-016
Attachments:: MX-7000N_20080919_102021.pdf

Attached is the Response of [redacted personally identifying information] Member, Family Network [redacted personally identifying information] to Request For Information.

Thank you.

[redacted personally identifying information]
Family Network on Disabilities of Florida, Inc.
[redacted personally identifying information]
www.fndfl.org

Family Network on Disabilities of Florida, Inc. [redacted personally identifying information] website: www.fndfl.org [redacted personally identifying information]

Response of [redacted personally identifying information], Member [redacted personally identifying information]

  1. Education. (a) educate all school employees who interact with a person with ASD about autism and techniques to provide a quality education the person deserves; (b) provide information on how to set up peer mentoring programs in each school for all ASD students regardless of if they are mainstreamed or not. interaction with students of the same age can be beneficial for the ASD student, as well as for the regular education student; (c) create a method of information sharing within each school district and ultimately among the school systems within the state so educators and parents can benefit from each other's knowledge, instead of relying on one school to be the sole source of information re: education of the ASD child; and (d) provide more funding for services in education.
  2. Health Insurance Coverage for individuals with ASD to include speech & language therapy, occupational therapy, Applied Behavioral Analysis, music therapy, art therapy and other therapies that may help improve skills the individual needs.
  3. Early Identification of ASD in children so they are able to take advantage of the IDEA Part C and that the benefit of therapies that can have a positive impact on the child’s development.
  4. Availability and Access of quality housing for persons with ASD.
  5. Creation of well funded Autism Centers within each state in order to provide information and support to the ASD community.
  6. Availability and Access to various therapies and specialists that specialize in providing services, including biomedical interventions, to persons with ASD, including persons who live in rural areas. Persons with ASD can have medical conditions that can cause health issues that affect the brain, immune system and gut.
  7. The facilitation of Marriage Counseling for couples here a spouse has ASD, as well as for parents of children with ASD. Preservation of the family unit is the key to the developmental success of a person with ASD. National Autism Association has created a network of counselors nationwide and offers grants to provide marriage counseling to couples parenting child(ren) with ASD. www.nationalautismassociation.org
  8. Expand Project Lifesaver to EVERY COUNTY in the United States through grants or discounts. It can be used help track persons with ASD, as well as others suffering from neurological disorders who can become lost. www.nationalautismassociation.orq.
  9. Facilitating the development of support networks in the communities for persons with ASD and their families. In many cases, families are outcast from society by the very nature of the disorder. Setting up support networks to promote active parental involvement in their child’s interventions and education which allows for the exchange of information regarding services and treatment responses is important. The same network should also be developed for persons with autism.
From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:27 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00111] RFI Identifier NOT-MH-08-016
Attachments:: MX-7000N_20080919_112534.pdf

Attached is the Response of [redacted personally identifying information] Florida PIRC of FND.

Thank you.

[redacted personally identifying information]
Family Network on Disabilities of Florida, Inc.
[redacted personally identifying information]
www.fndfl.org

Family Network on Disabilities of Florida, Inc. [redacted personally identifying information] website: www.fndfl.org [redacted personally identifying information]

Response of [redacted personally identifying information] of FND

  1. Awareness. Although Autism has received much press coverage and notoriety in recent years, the pediatricians in our medical system are still very archaic in how they handle the diagnosis of a child on the spectrum. Mandated training and guidelines on diagnosing a child/adolescent on the Autism Spectrum for pediatricians would be most helpful in early intervention, which has been proven to be crucial in treatment. All community based agencies and first responders should receive sensitivity trainings on how to interact with persons who have autism.
  2. Early Intervention. It may be advantageous for parents to sign a release at the time of their child’s diagnosis, enabling other agencies to contact them. Several months and way too much time passes before parents begin to navigate through the system. Even then, taking the appropriate steps can take up to six months on average before parents find appropriate services or treatment for their children. This lapse in time is crucial. Perhaps, agencies can create an internal data base with the medical profession that allows easy access to contact these parents and assist them by advising them of the services and options available.
  3. Education. In recent years, the need for services such as Occupational Therapy, Speech and Language Therapy, Physical Therapy, Behavioral Therapy and specialized instruction has increased. The need for providers has increased, and the demand for assistive technology has increased. The aid from other agencies such as Vocational Rehabilitation, etc., has increased, but the funding allocated for students with Autism remains the same or has decreased. This has left many students with Autism without appropriate services. As a result, there is a large number of students with Autism that have become homebound students,
  4. Day Care Providers. There is a large population of parents of children severely affected by Autism that are left without jobs and are forced to rely on public benefits as a result of having to stay home and care for their own children. If a child with Autism exhibits behaviors that may be construed to either endanger themselves or other children, the daycare reserves the right to refuse to provide services. There are no options or recourse for working parents. There is an urgent need for the requirement of daycare centers to have their staff receive specialized training on caring for children with autism. The strains on the parents are disastrous.
  5. Counseling/ Emergency Hotline. There are many parents that are homebound caring for their children/ or adult son or daughter, severely affected by Autism. There is an urgent need for crisis response and care for any person caring for an individual or child with autism who may have thoughts of hurting themselves or the child/individual with Autism.
From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:34 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00112] My Thoughts and Ideas For Funding Research
Attachments:: High Priority Issues Mark 2.doc

To Whom It May Concern,

It has recently come to my attention that you are interested in hearing from concerned parties about their thoughts and ideas regarding high priority issues concerning autism. As a person on the autism spectrum, as well as a professional, I would like to explain what I believe to be the most important current issues concerning autism. Education, transitional services, community inclusion and employment rank highly on my list. Another issue that is of great importance to me is the difference in effectiveness when comparing two prevalent models: treatment/ medical practice and support/ service delivery. How research is funded and implemented when considering these two models is also a concern.

Education is an important part of someone‘s life but when given challenges a natural progression through school is not often accomplished. For someone with autism this could mean being held back for a year or being sent to a special education classroom because they are too much of a behavioral problem. This can lead to stunted developmental pattern, because they are not educated with the other non-disabled students. Examining current supports with an eye to expanding or improving those services would be helpful. Every school does it differently. The same child with specific needs might receive inclusive instruction in school A but be sent to a segregated sight if attending school B. Not all parents or professional educators are equally trained, nor do they share a common philosophy.

This nicely segues into transitional services. A person can only stay so long in school and life after school can be scary. While transition is difficult for everyone, it is especially frightening for someone with autism. People tend to forget that people with autism get older. Most services being provided today are delivered to young children. The sooner that you can start working with someone on the challenges of autism the better, but this ignores a large population who have aged out of school. These young adults and parents have limited choices. Research aimed at the challenges and needs of this population is as important as sharing best practices and knowledge with young adults, their parents and human service professionals.

Some people with autism have difficulty integrating into the community after school is done. Some go on to college or work but face real challenges. Are the Difficulties due to lack of knowledge or social skills or pervasive discrimination? Would funding research into what helps and what hurts the transition process be helpful?

I don‘t know the figures for employment rates among those who are autistic, but there are issues one faces in the world of work. People with autism may need career counseling help with job searching, accommodations, on the job support, and positive employers who recognize and value their talents.

I am very interested in the differences and comparisons between treatment/medical practice and support/service effectiveness and how the research is funded and implemented. Over 150 million dollars is being spent to research autism spectrum disorders. Of this money, most of it is being spent on a treatment/medical agenda that looks at finding the biological nature, cure, and effective treatment.. In my opinion this is a waste of resources. You can research and research all you want about autism but until you start looking at the supports a person needs, incorporate the research already completed, and deliver services it is a waste of money. Each day more and more children, and adults, are being diagnosed with autism spectrum disorders and the services in place are either outdated or non existent. With the proper directed funding, research can and should switch the focus. Instead of trying to “fix us”, research how supports can help us live and function in our communities. How a person lives his or her is much more important than the latest research study that might give clues as to which genes cause autism.

[redacted personally identifying information]
Peer Advocate/ Community Integration Advocate
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:30 AM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00113] NOT-MH-08-016

One big area that there‘s a need for is services for high functioning autistic adults (:not just ‘social skills training’). A study ‘PubMed ID 11039855’ found that only 50% of teens with Asperger Syndrome were independent in self care and only 5% were independent in decisions about self–care. This is the highest functioning subtype, with normal to gifted IQ and no language delays. And it‘s reasonable to assume someone who is not independent in self care or decisions about self care in adolescence will still be having difficulty in that area in adulthood.

Very often, people like us are ineligible for services, because people assume someone who speaks well and has a high IQ couldn‘t have difficulty with self–care. If services are given, they are generally designed with the assumption that the person receiving services can't be a good judge of what services are needed – an assumption that might be warranted for those with no effective way of communicating their needs (though every effort should be made to provide them with as much meaningful imput as possible) but is very inappropriate for someone as verbal and intelligent as many high functioning autistic people are. For people who, like me, have a strong need for control over their own lives, this is especially problematic.

There should also be more counseling for autistic people and their families rooted in the idea that autism is not a disease that must be defeated at all cost, but rather a fact of life that does not bar the autistic person from living a full and happy life. This need is made clear by the tragic death of Katie McCarron, whose mother could not accept that her daughter was autistic and killed her as a result. Not all parents choose such a drastic solution, but studies show that parents of autistic children show higher stress levels than parents of children with other conditions such as Down Syndrome (PubMed ID 17947286).

[redacted personally identifying information]

I have a webpage at [redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 12:06 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00114] NOT-MH-08-016
Attachments: NOT-MH-08-016.pdf

Here is the letter as per [redacted personally identifying information]

[redacted personally identifying information]
Utah State Office of Education
[redacted personally identifying information]

September 18, 2008

To: Combating Autism Act, Interagency Autism Coordinating Committee

Re: Request for Information, Autism Spectrum Disorders NOT-MH-08-016

The Utah State Office of Education appreciates the opportunity to provide input regarding issues surrounding educating students with autism. Utah currently has 537,995 pupils enrolled in public schools with 2,625 students who have been identified as meeting the eligibility criteria for the autism education classification. The number of students with autism in Utah public schools has increased significantly over the past 10 years. Under the Individuals with Disabilities Education Act, eligible students, ages 3–21 must receive appropriate and individualized education services that meet their unique education needs. High–priority issues in delivering an appropriate education are as follows:

  1. Early identification and intervention. Young children have better educational outcomes if they are identified and have received early intervention before they enter preschool programs at the age of three. Research and initiatives that assist professionals in identifying young children with autism are needed.
  2. Intensive intervention. Utah educators have found that many students with autism need an intense level of instruction in order to make educational progress. Local education authorities are not compelled to employ a specific methodology but they are compelled to meet the student’s individual education needs. Questions arise and answers are needed regarding cost effective and appropriate methods of delivering instruction.
  3. Family involvement. Students make better educational progress when parents and families are involved. The stress of day–to–day coping on parents and siblings of a child with autism can negatively impact the effectiveness of parenting and structure in the home. Initiatives to assist parents in providing and maintaining a calm home environment are needed.
  4. Specialized training. Educators need specialized training in order to provide effective instruction for students with autism. Students with autism have been found to react differently than other students with disabilities to well–known teaching strategies such as consequence contingencies, incidental teaching, reinforcement, verbal instruction, and generalization techniques. Training initiatives and research identifying effective instructional strategies are needed.

The Utah State Office of Education values the collaboration and coordination efforts that reach across state agencies to create seamless services for individuals with ASD. Thank you for your interest in students with autism.

Sincerely,

[redacted personally identifying information]
Utah State Office of Education
[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 12:11 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00115] IACC RFI comments re services Strategic Plan

For consideration by IACC members re services and supports Strategic Plan:

Here is another article about ASD and girls to help identify ASD in girls more reliably instead of, as women who identified themselves as autistic have told in self–advocate listservs, misdiagnosing with psychiatric illnesses and consequently administering inappropriate treatments. Mistrust of any clinical professional can develop as a result of misdiagnosis and inappropriate treatment. That mistrust compounds the ASD symptoms and makes future treatment services and supports harder to deliver and less effective.

http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/7616555.stm (Autism ‘may be missed in girls.’)

Also medications have side effects and people with neurological issues like ASD can be more sensitive to medications. Please direct as much money to studying non–medication treatments like nutrition supplementation, behavioral and cognitive rehabilitation, and developing systems for referrals to mutual peer-support networks of people living with ASD sharing experiences, successes and failures. Examples of mutual peer–support networks include internet listservs, blogs, and autistic–led gatherings such as Autism Network International's Autreat. Independently of ANI a replication of Autreat has happened in the UK called Autscape for people who are unable to travel to the USA to attend Autreat.

Please have studies of services and supports include how people with ASD are helped in other countries than the USA such as the UK and in Australia. Please include a study of how vocational rehab agencies in each state do their own evaluations of people, as well as integrating prior evaluations into development of individual plans for trying to help people with ASD find and retain jobs. One way to improve VR services would be to allow and encourage counselors to seek continuing education, such as attending conferences including ones organized by and for people with ASD such as Autreat or Autscape, to learn of new developments in disability research particularly involving more precise identification of individuals that can lead to better service outcomes. The ‘state of the states’ assessment the Strategic Plan refers to in question 5 (where can I turn for services) should include differences in state VR programs and how they are funded, administered and overseen. Inclusion of state VR comparisons would allow replication of what services and methodologies work and elimination of what doesn‘t for best use of public money.

[redacted personally identifying information]

  • self-identified and medically–confirmed, as an adult, person with AS (Asperger's Syndrome) a developmental disability that can lead to psychiatric symptoms
  • co–occurring diagnosis of depression that was only access point to rehab services enabling me to find and keep a job. State I reside in, Maryland, doesn't provide developmental disability services for people not presenting as mentally retarded/intellectually disabled. Maryland provides most rehab service funds to developmental disability services not psychiatric rehab services.

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From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 12:28 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00116] NOT-MH-08-016
Attachments: NIH IACC Roadmap priorities submission2.doc

Please find a submission for RFI NOT-MH-08-016 attached here from the Ivymount School in Rockville, Maryland (www.Ivymount.org)

[redacted personally identifying information]

Submission for RFI: NOT–MH–08–016 Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD)

September 19, 2008

The Ivymount School in Rockville, Maryland works with students across the autism spectrum, with four programs supporting the wide range of needs represented in this population. The Autism Program provides ABA based interventions to 43 students. The Multiple Learning Needs Programs provides services to 106 students with a wide range of disabilities, at least 50% of whom are on the autism spectrum. The Model Asperger Program serves 21 students with normal to above average intelligence with social learning challenges. Last, the Post High School Program works with 43 students ages 18–21 to develop life skills and vocational training.

As the IACC Roadmap identifies, there is a critical need for evidence–based interventions. As educators working on the front lines, we have a pressing need for extending the research findings on theory of mind, executive function, and central coherence to the classroom. Making the leap from laboratory insight to intervention application is essential, and cannot often await large scale intervention studies. We propose IACC encourage more discussion and flow of information from the research community to educators, perhaps by publishing an educator–focused newsletter on latest finding, sponsoring conferences designed to bring researchers together with educators and lastly sponsoring research studies that are demonstrate how to integrate or extend the intervention into daily educational environments.

In addition, we need to foster greater communication among educators working with students with ASD’s. Educators attempting to implement innovative or novel interventions struggle to find like–minded educators. We propose that IACC facilitate communication among educators, through conferences, newsletters and listserves. Ideally a web page for autism educators only would be developed to allow teachers and administrators to share wisdom and disseminate information quickly.

A third area of challenge is supporting students with ASD’s in higher education. We must harness the unique intelligence and talents of students with ASD’s who have the cognitive abilities to go to college by supporting their unique learning needs in that environment. This should be part of any adult–transition supports that are developed under IACC auspices.

Last, we need to build the reservoir of people trained to work with students with ASD’s. This would be akin to the IACC Roadmap plan for promoting biomedical autism research; young people need to be identified, recruited and encouraged to work with this population. A possible starting point is developing internship and scholarship programs for young people who seek to work with students with ASD’s.

We, here The Ivymount School, have made supporting students with ASD–s the driving force behind our programs, and see the issues listed above as the next phase of priorities for educational initiatives and research areas to support students with autism spectrum disorders and professionals who have committed their time and attention this area.

Respectfully submitted,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 12:44 PM
To: IACC Services (NIH/NIMH)
Cc: IACC (NIH/NIMH)
Subject: [Comment 00117] IACC RFI NOT-MH-08-016

RE: NOT-MH-08-016

Dear IACC members:

Thank you for the opportunity for stakeholders to provide input into this RFI process. I am a dyslexic individual who is the parent of a spectrum individual.

Part of the IACC's expressed Vision Statement is to "accelerate and inspire research that will profoundly improve the health and well being of every individual on the autism spectrum...." To even begin to address attempting this goal, you must begin the process within your own organization [NIH/NIMH]; in which case you must stop the damaging language (diaper-wearing; burdensome; robbed of personhood) you persist in using about autistic individuals. Director Tom Insel needs to publicly apologize for his several disparaging comments toward autistic citizens as he has set a tone that is damaging. Most specifically, Director Insel should apologize for the overall doltishness of the following comment: "[Autism] really robs a child and a family of the personhood of this child." If the Director of the NIMH actually believes this about an entire group of oppressed individuals whom it is part of his job to help and protect, then he really needs to step down. [Note: Personhood reference: http://www.neurodiversity.com/autism_and_personhood.html ]

The IACC's Mission Statement states that the purpose of the Strategic Plan is "to focus, coordinate, and accelerate high quality research...in partnership with stakeholders to answer the urgent questions and needs of individuals on the autism spectrum and their families." First, the actual stakeholders need to be appropriately determined. Because right now it seems, from someone who attended the Sacramento Town Hall meeting; at least one phone conference meeting and read every word on-line the IACC has released, that the deck has been stacked in favor of those PARENTS who have an ANTI-VACCINE BIAS and have been leading the IACC, the NIMH and Director Insel around by the nose. Please! These .ORGs have had their say. They have diverted time and money to the detriment of all autistic citizens. Is there ONE PERSON in the NIH/NIMH who can stand up to them? Is there ONE PERSON in the NIH/NIMH ... within the IACC ... who can tell these pseudo-scientific, faux-charity groups that they've had their time on the stage; they've have had their say; their voices have been heard by all the top government scientists, but NOW we -- as a public entity -- need to let other voices, voices of the actual oppressed, be heard. IS this possible? Or does the NIH/NIMH/IACC need to keep placating the scare-mongers?

-->Ref: "So many moms have said to me..." http://www.autismvox.com/pressure-to-study-chelation/ --- Yes, I realize that the chelation trial was [finally!] canceled. Does Director Insel realize that the 'moms' reporting to him were self-selecting? Only those that had little care that he classified those on the spectrum as missing their person hood, plus his being a near-apologist for Lyn Redwood and Co. would have contacted him in the first place.

I understand that this particular RFI [016] concerns services and supports, which I will address below:

Education

Current education for those on the autistic spectrum is failing. We are in the second largest school district in the US -- [redacted personally identifying information]. My child was struck and hit by his teacher on more than one occasion .He was threatened with what is referred to as "jail" at his school if he informed his parents about his being hit. This his his school: http://www.thehelpgroup.org/index.php The jails are the isolation rooms they use as a form of punishment at this UCLA-affiliated, ABA-based school. We (his parents) were not told about the isolation rooms. There is a different standard used for regular kids vs. kids on the spectrum within the education system. This should be investigated and exposed by the IACC. The abuse in schools is very damaging to the mental health of autistic students and the current education set-up only exacerbates the situation. ABA is punitive based and it harms people. It should not be used in schools. Much advantage could be made of highly-skilled one-one-one tutoring which could be done at school or at home -- which ever is more comfortable for the autistic learner. Currently, I know of no school district that will allow this, yet it would be a viable answer to many spectrum-based education dilemmas. This kind of education, however, was common practice many years ago. The IEP system needs to be overhauled and each child's specific learning differences and emotional situation need to be address. Furthermore, much more access to technology and assistive communication devices need to be made available. As much learning as a student can do on-line -- regular ed and remedial -- should be made available for them to do at school and at home. The autistic learner should be made to have comfortable learning environment ... as defined by themselves ... not merely an IEP team.

Health and Medical Services

We have, unfortunately, encountered prejudice from the regular medical community. It seems there is one set of health standards for typical people and another for those one the spectrum. I have found bias and discrimination in this regard from various high-level health providers in the Los Angeles area, specifically at UCLA's Medical Center [redacted personally identifying information] is one area to be specific). They had very out-dated, antiquated way of viewing my spectrum child and said very biased things as if he could not hear them speak. They seemed to want to gauge his treatment for a wholly separate matter (growth hormone disorder) based on the the fact that he is autistic and would (in their minds) not need the same kind of long-range treatment as any other 'typical' child. It was appalling. That UCLA is the home of Ivar Lovaas is not to be missed; the man who wired the floors with electro-shock in attempts to teach autistic learners to read. This kind of biased treatment by mainstream medical providers turns out to be common as I have heard stories from others. Remembering that only few decades ago the mainstream medical community placed autistic citizens in institutions. So, many do not "see a future" for the kids when they see them as patients. This is akin to malpractice. (It's probably also what drove many straight into the offices of hucksters and charlatans).

The IACC must make very strong attempts at re-educating the mainstream medical community about those on the spectrum, otherwise autistic citizens will not have equal access to health care. Period. This means theIACC must absolutely stop all this dreadful talk about autistic citizens (including Director Insel's comments) and it must stop doing 'business' with those entities which promote hate speech against autistics -- such as SAFE MINDS [Ref: Heidi Roger, "Better Dead than Autistic" http://leftbrainrightbrain.co.uk/?p=1355 ]; Lobbyist Rick Rollens (who began the tirade against autistic citizens by creating the faux-epidemic as a means of generating funds for his clients) with his use of terms likening autistic individuals to train-wrecks and tsunamis; and even the ASA when asked in the Sacramento Town Hall Meeting to stop the use of such terms (empty shell; soulless; drain on society) dithered in the their response. In fact, all of the current autism organizations the IACC appear to be dealing with condone and practice (!) hate speech. Please, once and for all, make a firm stand against this abuse of civil rights. Without this, the IACC will essentially go nowhere toward really helping the autistic citizens of the United States.

I know I'm over a page by now. Let me slip in a brief statement about broadly expanding Counseling and Therapy (incl. Psychotherapy) Services to those on the spectrum -- available from highly-skilled and respectful counselors/therapists. Because autistic citizens are an oppressed group and often subject to abuse by law enforcement; educators; medical personnel; and all manner of abusive bigots, one needs to be mindful of things like PTSD in an already wonderfully sensitive, emotional (sometimes anxiety-wired) populace.

Respectfully submitted,

[redacted personally identifying information]

19 September 2008

Please read the Autism Hub !

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 3:02 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00118] NOT-MH-08-016
Attachments: NOT-MH-08-016-Reply.pdf

Please find attached our summary of high–priority issues facing ASD services. It is a PDF document. If you prefer a different format, please let me know,

Sincerely,

[redacted personally identifying information]

September 16, 2008

Dear Interagency Autism Coordinating Committee Members,

This page is in response to the Request for Information issued by the National Institutes of Health to pinpoint pressing problems and needs in relation to persons with autism.

We are a group of more than [redacted personally identifying information] school psychologists, special education teachers, therapists, parents of children with autism, and computer scientists from different school districts across the United States. Our group expertise encompasses decades of special education of children with autism, education of future teachers, and software development expertise to facilitate the children’s interaction with and integration in the community by augmenting communication and learning.

With a [redacted personally identifying information]–person strong action group, we summarized current pressing needs and potential solutions that should be addressed by the NIH:

ASSESSMENT NEEDS:

  1. Integration and streamlining of assessments per child. Currently, a child is assessed by different specialists, teachers, and therapists. Caregivers need an integrated view of all these results.
  2. Systematic and standardized integration of diagnostic measurements, follow–up measurements, and evaluation criteria across the country to facilitate epidemiological data collection, large–scale assessments of therapy impact and progress, and improved continuity in treatment when children move out of a district.
  3. Improved assessment of children with autism that includes tests that do not require verbal communication or pointing and assessment methods that allows tele–diagnosis.
  4. Balanced assessment that includes strengths and weaknesses so that therapy is not limited to fixing the problems but can also focus on building on strengths.
  5. Re–assessment after significant milestones or life events, because often, significant changes occur in short periods (e.g., puberty).
  6. A means to collect, store, and preserve data in the long term by therapists and teachers for therapy evaluations purposes and by parents for insurance, healthcare, and personal purposes. Sufficient attention need to be paid to privacy and easy–of–use.
  7. Potential Solutions
    • Dynamically adjusting testing methods optimized for the child’s mental and physical development stage that allow systematic diagnosis and data collection using metrics and standards and preservation of this data over time as a benchmark to evaluate progress and change.
    • Telemedicine and computer supported cooperative work for assessment, education, training, and caregiver support at a distance.
    • Mobile solutions that allow for data collection any time and any place.
    • Attention for and continued support of information technology in teacher education.

COMMUNICATION AND SOCIAL INTERACTION NEEDS

  1. Communication tools that allow natural communication and are accessible any time and any place.
  2. Social interaction tools to teach, strengthen, and reinforce interaction. They should progress with the users and be based on verified transition protocols to prepare the child to become a member of society.
  3. Potential Solutions
    • Group communication software and devices.
    • Environment–aware communication software and devices.
    • Adaptive and incremental or module based communication software that self–discovers training needs and strengths.

INFORMATION DISSEMINATION NEEDS

  1. Continuous and efficient information dissemination for therapists, teachers, and parents to learn about new initiatives (assessment tools, intervention tools).
  2. Decreasing the digital divide that separates different school districts and parents who belong to different socio–economically groups. Because of a lack of information, several free or otherwise achievable programs are unknown to many groups.
  3. Potential Solutions
    • An Internet-based clearinghouse of information on programs, support, tools, standards, etc.
    • Portable electronic health records that allow individualized privacy settings and can be shared, as appropriate, with caregivers and parents to exchange data, information, and resources.

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Wednesday, August 27, 2008 12:30 PM
To: Schwechter, Azik (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: RFI Priorities for Autism Spectrum Disorders

Dear Dr. Schwechter,

This email concerns the RFI due September 19th on Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD).We are a group of young information technology specialists who work closely with caregivers of children with autism. We have developed software that assists with communication. It is based on the principles of the Picture Exchange Communication System but uses PDAs and so has several advantages over a paper-based approach. We are also developing an online community for our participants. Our teachers and therapists work with children from all different socio–economic backgrounds. In our group, we have discussed several additional needs where technology could provide a solution, such as touch screens to facilitate self–managed progression through a daily schedule or for specific tasks, or more systematic data collection and evaluation of communication data in response to therapy styles, ...In response to this RFI, I plan to hold a conference call with our group. However, I wondered what the preferred information is that you are looking for: a list of problems, a list of potential solutions, focus on technology, ... .? I would also like to know if we will receive any feedback on our contribution or if there will be future interactions based on this. We are a unique, young, and energetic group with a good track record and we can make contributions to the autism–community (research and otherwise).

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 3:45 PM
To: [redacted personally identifying information]
Subject: [Comment 00119] communication regarding input on autism research

I am a mother of a child with autism spectrum disorders who regressed between 15 months and 18 months of age. His medical history prior to regression and loss of language included gastroesophageal reflux, frequent ear and upper respiratory infections in the first year. He was on antibiotics prophylactically for a year between ages 16 mos. to 27 mos. He exhibited a high fever, 105 the evening he received his MMR and DTap. He subsequently lost all language and regressed developmentally, prior to that developmental milestones had been age appropriate. Testing at 27 mos. indicated receptive speech was at 9 mos. level and expressive was at 6 mos. level.

He is 10 and has recently been diagnosed with a primary immune deficiency. At age 8 he suffered from RSV and developed a fever of 105. Interestingly, he is fully recovered from any autism symptoms during the presence of a high fever. I believe this may be due to potentiation in certain anti–inflammatory cytokines during the presence of fever. I am particularly interested in TNF–a, IL–6 , IL–10 and IL–2. Also, given the history of regression in some children with ASD and possible viral insult, I am interested in the potential role of anit–viral drugs for this sub–cohort. Having said that, the NIH and IACC needs to determine sub–cohorts of ASD and begin testing for variances.

Our son has responded very well to a special diet and supplements that support methylation. Testing of neopterines has indicated improvement in DNA damage.

Thank you,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 3:50 PM
To: IACC Services
Subject: [Comment 00120] NOT-MH-08-016: Response to IACC Request for Information
Attachments: RFI - IACC.doc

Attached please find a response to the request for information NOT–MH–08–016 from the IACC.

<<RFI – IACC.doc>>

Best regards,

[redacted personally identifying information]

LEGAL DISCLAIMER:
Any information contained in this e–mail, including attachments, is provided to the Governor‘s Task Force on Autism Spectrum Disorders membership and interested parties to be read at the discretion of the recipient. It does not necessarily represent the views of the Florida Department of Health, the Office of the Governor, or the Governor‘s Task Force on Autism Spectrum Disorders. Neither the Office of the Governor nor the Florida Department of Health warrant or represent the accuracy, completeness or the scientific validity of any information contained therein nor do any references to specific organizations, events, commercial products, processes or services constitute or imply endorsement or favoring by the Florida Department of Health, the Office of the Governor, or the Governor‘s Task Force on Autism Spectrum Disorders.

PLEASE NOTE:
Florida has very broad public records laws. Most written communications to or from state officials regarding state business are public records available to the public and media upon request. Your e–mail communications may therefore be subject to disclosure.

Response to IACC Request for Information: NOT-MH-08-016M

Ideas for Education Services

  • Require all current childcare providers, preschool providers, voluntary pre-kindergarten providers, and elementary school educators (through Grade 5) to take a basic, short (1 hour) introductory online course on autism spectrum disorders: signs and symptoms, recognition, discussion with parents, referrals, classroom inclusion, Individualized Education Plans, bullying and behavior. This requirement may be part of fulfilling a pre-existing continuing education requirement so as not to add total hours required.

Ideas for Health and Medical Services (Including Dental)

  • Require all health care professionals treating children through age 12 (approximately Grade 5) to take a basic, short (1 hour) overview online course on autism spectrum disorders: signs and symptoms, screening, discussion with parents, referral for evaluation/diagnosis by an interdisciplinary team, medical home concepts for ASD, and long-term strategy. This requirement may be part of fulfilling a pre-existing continuing medical/health professional education requirement so as not to add total hours required.
  • Explore incentives for early childhood health care professionals to adopt the American Academy of Pediatrics recommendation for autism-specific screening at 18- and 24-month well child visits in addition to traditional developmental assessments.
  • In order to retain qualified providers, explore the offering of incentives (e.g., loan forgiveness, state license reciprocity) for qualified health care professionals/dental professionals who pledge to have x% of their practice for the service of ASD, particularly if covered by Medicaid.

Ideas for Housing

  • Strategize ways to create local/community support and cost-share across families (e.g., local funding to support non-residential facility housing and empower families to manage housing costs at home when possible).

Ideas for Transitions

  • Provide transitional counseling group presentations for free or, if at a cost, include as a covered insurance/Medicaid cost. Would include information on coverage, transitional health care, loss of caretaker, jobs, transportation, finances, housing, estate planning.

Ideas for Employment

  • Provide employment presentations for free or, if at a cost, include as a covered insurance/Medicaid cost. Would include information on job search, identifying and utilizing skills, benefits, and job transition.

Ideas for Community Inclusion

  • Collaborate with schools, local organizations, faith-based organizations, to encourage one-on-one mentoring and “best buddies” or “big brothers/sisters” programs with individuals with ASD
  • Additional awareness campaigns focused on inclusion/understanding/support of individuals with ASD and their families as being “good for business,” “good for families,” and/or “good for the state/nation.” Collaborate with personal service providers (e.g., massage therapists) and local/chain businesses (e.g., babysitting services) to provide reduced-cost respite services.

Ideas for Safety

  • Require all currently-serving law enforcement officers, emergency responders, EMTs, fire fighters, etc. to take a basic, short introductory course on autism spectrum disorders: signs and symptoms, recognition, responses of persons with ASD to touch or commands, use of restraint, missing persons with ASD, drowning, safety issues and discussion with caretakers. This requirement may be part of fulfilling a pre-existing continuing education requirement.
  • A heightened Amber-Alert type system for missing individuals with ASD.
  • Review state and local enforcement of allowable ADA modifications to housing (e.g., fence height).

Ideas for Older Adults

  • Provide older adult transitional counseling group presentations for free or, if at a cost, include as a covered insurance/Medicaid/Medicare cost. Would include information on coverage, transitional health care, advanced directives, finances, housing options and modifications, and estate planning.

Ideas for Guardianship, Estate Planning, and Advanced Directives

  • At the state/national/federal level, collaborate with the law schools to encourage clinical credit programs in which the law student, working under the supervision of a licensed attorney, provides no cost/low cost guardianship and estate planning services to people with ASD and their families. This could be a portion of mandatory service hours in law schools requiring service for graduation (e.g., Harvard Law School).
  • At the national/federal level, collaborate with the American Bar Association to encourage a national pro bono service initiative for no cost/low cost guardianship and estate planning services to people with ASD and their families
  • At the state level, collaborate with the state bar association to encourage a national pro bono service initiative for no cost/low cost guardianship and estate planning services to people with ASD and their families

Ideas for Personal Finance

  • Collaborate with major insurance companies to encourage the offering of free/low insurance planning seminars geared toward to individuals with ASD and their families
  • Contact the Certified Financial Planner Board of Standards Inc. to explore ways of encourage the offering of free/low financial planning seminars geared toward to individuals with ASD and their families
From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 3:55 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00121] RFI identifier, NOT-MH-08-016

The challenge in autism research is to achieve the following sometimes conflicting goals:

  1. Attract the best and the brightest scientists to study ASD
  2. Fund them – that means not always utilizing past researchers to review new and innovative science. There is a well recognized “autism mafia” and whether real or not, many top scientists are not prepared to submit RO–1‘s or project grants if they feel they will not be reviewed objectively. I know that in my institution some of the best scientists have been discouraged by the quality of their reviews at NIH except during Project grants when no one funded in the field is reviewing the grants since they are also applicants.
  3. Balance the funding of research into etiology and treatment as well as high risk–high impact versus incremental research.
  4. Do not fund repetitive research into etiologies that are already over represented by negative studies – e.g. immunization with MMR even with political pressure.
  5. Do not have short grant writing windows that make it appear that grants are “wired” since no one could put together an outstanding grant in the time allotted before submission. As a clinician in this area, this is the most upsetting as the review process is clearly compromised since only people with “inside information” or already doing the work can actually apply. This eliminates a real competitive process which is the core of the grant process.
  6. Reach out for creative stake holders in creating the content and process for funding as old paradigms have clearly not be adequate to the research question. I am saying the same thing to families who I diagnose with a young child with ASD as I did 20–30 years ago. I have a sense that the science in this area is finally at a level to begin to answer questions about ASD, but only if we organize the funding to facilitate the highest quality research in all areas. We appear to be in about the same place the pediatric oncology was in the late 1970‘s as far as our ability to unravel the science and create novel interventions derived not from rumor but from real scientific findings through clinical trials.

[redacted personally identifying information]
Children's Hospital, Boston
[redacted personally identifying information]
Harvard Medical School

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 3:43 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00122] NOT-MH-08-016

Hi,

Things that people with autism and their families desperately need (I’m a caregiver for a nephew with autism. My sister is a single mother who desperately needs help):

  1. Child care, adult day care and respite care (My sister is a single mother, works 6 days a week, and cares for her disabled son 7 days a week There aren’t any after school programs, nearby, that she can afford. They all require that she pay additional money for an individual aid for my nephew. If she pays that, it negates what she would earn working those hours. A real “Catch 22” situation. The schools don’t provide after school care programs either, although most public schools do. My sister’s neighbor has after school care 5 days a week, from 3–6, for $125 per month. My sister has to pay a specially trained caregiver $25 an hour to watch her son. How fair is that? How do we get care on weekends or when she has a doctor’s appointment? Easy, Auntie has to take time off from work because their just isn’t anything else out there. I have to give up 3 weeks of my time every summer to watch him so my sister can work.)
  2. After school care, so that parents can work – differs from child care, adult day care and respite listed above. (What’s available now? Not much. And what is out there is either not suitable, i.e. many autistic people need one on one care and most after school programs don’t provide this, or at a very high cost, too high to cover and work at the same time)
  3. Summer camps, both day and overnight. Not many around. Not many that are “good” (do I have horror stories to tell about one we tried. One day I&ll write a book.)
  4. Athletic and extra curricular activities especially for autistic individuals (Cannot find even ONE place with a swimming pool available Monday–Friday between the hours of 3 to 6. Most of these children go to bed early, so evening pool hours just don’t work. Most of the YMCA’s and other pools cater to swim teams, swimming lessons, or swim practice or classes – no time or inclination to offer swim time after school.)
  5. Doctors, hospitals, nurses, dentists and orthodontists and opticians who are TRAINED to deal with autistic patients (had one doctor tell us that “don’t worry, autistic children don’t feel pain the way you and I do”, when my nephew cracked open a tooth. I don’t know many people who don’t feel pain when a nerve from a tooth is exposed.)
  6. Jobs, activities and meaningful events for adult autistic people – not just day care where they sit around a room and watch TV all day until they leave. Places with pools for exercise, that go on field trips, that have activities for them to do and enough aids to assist.
  7. Public awareness programs for police and other security personnel on how to handle someone who is autistic (we were literally separated from my nephew at a security checkpoint at Newark Airport, despite us pleading with them not to remove my 7 year old autistic nephew from us, to no avail. Try to explain to a 7 year old who doesn’t communicate why they have to search him at the airport? Now THAT was a fun trip!)
  8. General public awareness campaigns on autism. (i.e. no, he’s not just a brat, he has autism and is having a meltdown. We don’t know why because he cannot communicate that to us. So we just keep him and us safe until it’s over. The kind of information that the general public needs to know to help people from staring at us in supermarkets or McDonalds or other public areas. AND to inform them that autism and mental retardation are TWO different things.
  9. Facilities to handle all the unisex issues that come up, for example, more unisex restrooms, locker rooms, changing rooms and shower facilities so that I can actually bring my 11 year old nephew to the beach and then take him into a restroom. Right now, we end up using the ladies room, with stares and comments. Don’t know how much longer I can do this before someone calls the police on us for having a man in the ladies room.
  10. Insurance policies that cover therapy and respite care and other medical needs of these children and adults.
  11. SOME way of federal, state, county and local governments coordinating all the programs and aid available for these people. With the Internet, this shouldn’t be difficult to do. Just hotlink. All these agencies operate as if they were in a vacuum. Get together and let the parents know how to navigate all the different agencies. It took us 10 YEARS to get the NJ Commission for the Blind to consider giving any assistance to my nephew. This was after repeated inquiries and tests. Even though he had a vision disability since birth. Crazy stuff like that makes you just want to give up.
  12. More Group Homes and residential facilities for adults to live in once their parents and caregivers can no longer care for them. Group homes with qualified personnel. Group homes with athletic facilities available to these people.

Feel free to call or contact me about any of the above issues or ideas. I’d be glad to help in any way I can.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 4:13 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00123] RFI Indicator NOT-MH-08-016
Attachments: MX-7000N_20080919_155118.pdf

Attached is the Response of [redacted personally identifying information] FND.

Thank you.

[redacted personally identifying information]
Family Network on Disabilities of Florida, Inc.
[redacted personally identifying information]
www.fndfl.org

Family Network on Disabilities of Florida, Inc. [redacted personally identifying information] website: www.fndfl.org [redacted personally identifying information]

Response of [redacted personally identifying information] of FND

Education Services: While we've come a long way in special education services, we still clearly have a long way to go. One issue that is of particular concern is the tendency to push a curriculum heavy on classes such as "Life Skills Training" which, contrary to my belief that my son would be learning how to balance a checkbook and fill out job applications, turned out to be learning to wipe tables and mop floors. The school was shocked at my objection to having my son wipe tables. They thought I should be grateful he was learning a "skill". I fought for years for him to get both Algebra and Spanish. He never got either one. Both Algebra and a language are requirements for a standard diploma. We had to settle for him getting classes in the areas in which he's shown the most aptitude, Art and Computer. This is a student who, with the right training, could work animating films and make a nice living, thereby becoming self sufficient. Instead, my son and others like him are being encouraged to gel jobs mopping floors and folding napkins at the expense of academic instruction and continuing education. The students must have their individual needs accommodated in order to have the best possible post-school outcome. It’s as if they are sitting on a fence and being pushed into learning menial tasks and working at low wage jobs when they are capable of doing so much more. A friend who has a child with Autism in 11" grade asked to opt out of OJT (On the job training) due to her son losing 3 hours of Academics every day and was told, "That's what we're doing with all of them, where would he go?" This "herding" sort of practice is unacceptable and contrary to the individual Education our children should be receiving. It seems logical that if we could get this right, tailoring instruction so students can have the best possible outcome, that it would have a positive impact on the other 10 areas, by allowing more students to be contributing members of society, Unfortunately, I hear stories similar to my son's with disturbing regularity in my work educating parents how to best advocate for their children with disabilities.

Health and Medical services including Dental: All professionals need continuing education in their fields. It should be mandated that part of their CE, regardless of their field, will include training in serving persons with disabilities.

Housing: Funding will be needed to help with housing and training to foster inclusion in the community.

Transition: Job and life skills coaching are crucial in fostering independence for persons with ASD. Parents also need information on a variety of topics when children transition into adulthood. Including guardianship, accessing public benefits, and future and estate planning.

Employment: More training is needed in areas in which the individual has shown an aptitude. So many people with ASD can do so much more than they are being trained to do, as stated above.

Community Inclusion: Again, we've come a long way, but still have far to go. I see factions starting movements for private communities. Some insist a parent or guardian live onsite with residents, some don't. I've recently received several surveys regarding these communities. I can understand why some people feel that this is their best option. We hope that our son will be able to function with supports in the community without having to remove him from the general population so I focus my efforts there. Of course; we need to make sure funding is available for those much needed supports.

Safety: More training for emergency workers, med techs and law enforcement should be required. Again, this could be mandated as part of required Continuing Education.

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 4:23 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00124] Response to RFI , NOT-MH-08-016
Attachments: Response to RFI 091908.doc

Attached is the response from the Oklahoma HealthCare Authority. Please contact [redacted personally identifying information] or [redacted personally identifying information] for additional information.


DISCLAIMER – This e–mail message, including any attachments, is for the sole use of the intended recipient (s) and may contain confidential and privileged information.

If you are not the named addressee you should not disseminate, distribute or copy this e–mail. Please notify the sender immediately by e–mail if you have received this e–mail by mistake and delete this e–mail from your system.

The sender does not accept liability for any errors or omissions in the contents of this message, which arise as a result of e–mail transmission. If verification is required please request a hard–copy version.

In 2001-2002, a study group of the primary agencies and providers servicing people with autism in Oklahoma, representatives of higher education and parents of people with autism met for ten half-day meeting to identify needs and develop a plan for the population diagnosed with Autism Spectrum Disorder. Key findings were:

  1. The numbers and rates of people identified as having autism in Oklahoma are increasing.
  2. Early diagnosis and treatment are essential to effective care and treatment of people with autism.
  3. People with autism encompass diverse populations for whom no single model program can be described as the most appropriate.
  4. The Autism Working Group did not agree that a singe, residential site for people with autism is needed or beneficial.
  5. The various Oklahoma programs and agencies involved in providing services and support related to autism are not well coordinated and do not offer a seamless continuum over a person’s lifetime. A new workgroup is working to modify policies that will allow for compensation by Medicaid for BCBA, BCABA, instructional assistants in schools and a paraprofessional provider in the home.
  6. Oklahoma lacks sufficient, effective training and technical assistance for caregivers, service providers and programs serving people with autism. Currently one university in Oklahoma has begun to offer courses that would provide the education and training for persons to become a BCBA.
  7. People with autism encounter difficulties as a result of insufficient understanding of the associated behaviors among general service providers and emergency responders.
  8. Sufficient programs and services, including transition services, are not available in Oklahoma to adults (age 18 and over) with autism, especially those enabling each person to achieve his or her full potential as an adult and to be safe during a crisis.
  9. Too many unnecessary guardianships, resulting in a loss of rights, autonomy and self-esteem for those affected.
  10. When guardianship is needed, there are not always family members willing or able to serve resulting in a waiting list of individuals who need volunteer guardians.
  11. Many guardians have little knowledge of their role and responsibilities, both legal and ethical. Sharing of such knowledge with existing guardians is of paramount importance to insure that individuals are treated with respect by their guardians and the guardians are carrying out their responsibilities as required by law.

Specific initiatives to ASD;

  1. Autism Pilot Program: Purpose is to focus on strengthening the family’s capacity to support their child with autism and to help families build their natural support network. The program began Oct. 31, 2006, is self-directed by families using a financial management services to handle payroll, taxes, and vendor payments and has a capped service budget of $12,360 per year. Currently serving 30 families.
  2. Easter Seals Project—Autism Therapeutic Day School: School for ages 2-5 providing ABA services 20-40 hours per week. Program is for 49 weeks, offered all year, interacts with other intergenerational programs, offers speech and occupational therapy and serves 16 children at a time.
  3. Outreach Project from Autism Network and PEAK purpose is to address challenges within the current service systems including high intensity services in an inclusive model and to provide training for students, professionals, and families.
  4. Project PEAK developed a resource guide for families and professionals.
From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 4:21 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00125] NOT-MH-08-016
Attachments: RFI9_20_08 (3).doc

 

Date: September 19, 2008

To: RFI: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders

From: The Utah Registry of Autism and Developmental Disabilities [redacted personally identifying information]

Currently the Utah Registry of Autism and Developmental Disabilities is attempting to determine the prevalence of Autism Spectrum Disorders (ASD) and other developmental disabilities for children born in different years in our state. Additional funding would be requested for state surveillance systems to count the numbers of children with ASD at different ages, to map their geographic and site of service locations, to estimate their current service utilization and to estimate the long-term outcome and service needs of this growing population.

Surveillance systems provide a basic framework to address high-priority service related questions:

  • Is the number of children with ASD continuing to rise and by how much?
  • How many resources are needed to serve this population? (Therapies, trained teachers, diagnosticians, health care providers and related services).
  • What are the characteristics of children with ASD and how, when and where and when do they receive a diagnosis and treatment?
  • Are there risk factors that service providers can identify to improve early diagnosis and long-term treatment outcomes?
  • What are the costs of treatment over a life span?
  • What are the best indicators to measure treatment outcomes over a life-span?
  • What are strategies to improve cross agency collaboration and service delivery?

Your support of federal funding for state ASD surveillance systems in crucial for addressing ASD service needs in our communities.

Thank you for your consideration.

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 4:24 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00126] NOT-MH-08-016
Attachments: CA Blue Ribbon Closing the Gaps.pdf

To: IACC Services Subcommittee

We appreciate the opportunity to provide input about high–priority questions and issues surrounding services and supports to people with ASD of all ages. Based on our 10+ years of experience in advocating for the autism community and the recent development of a department for Family Services (click here), Autism Speaks is pleased to see the IACC devoting special attention and resources in the areas of services and support across the lifespan for individuals with ASD and their families. While research is critical in helping us understand the biology of autism, its causes and ways to prevent, treat and cure it in the future, it is tremendously important for our society to identify ways to improve the quality of life for those who suffer from autism today. With more than a million Americans living with ASD, it is paramount that these opportunities be addressed in an expeditious manner to mitigate the pain and suffering that most families affected by autism endure every day.

Autism Speaks has conducted a comprehensive review of the literature and researched various programs or initiatives that are currently underway across the country. It is our opinion that the work done by the California Legislative Blue Ribbon Commission on Autism represents some of the finest reviews of the gaps currently facing the autism community. Many, if not most, of the recommendations identified by the Commission pertain to services and supports. Rather than repeating or rewording the excellent work completed by the Commission and their three task forces during the past three years, we are including a one page summary called “Closing the Gaps – Improving Services & Increasing Opportunities”. For more detailed information about the Blue Ribbon Commission, please visit their site at http://senweb03.senate.ca.gov/autism/index.html. Nearly everything we would recommend for the Services Strategic Plan are included in this document.

In closing, we would like to offer our assistance in being an active participant in the development of future plans for autism services and supports. Autism Speaks is currently funding nearly $2 million a year in this area and we anticipate making an even larger investment in the future. Once again, we thank you for your commitment to improve the availability of services and supports for the autism population.

Very truly yours,

[redacted personally identifying information]

www.autismspeaks.org

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided in this email is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism.

THE CALIFORNIA LEGISLATIVE BLUE RIBBON COMMISSION ON AUTISM

[redacted personally identifying information]

Closing the Gaps ~ Improving Services & Increasing Opportunities

Overview & preliminary draft of the recommendations from the three Commission Task Forces:

  1. Public Education, Awareness, & Outreach
    • Providing effective public information, education and community outreach through a strategic multimedia campaign that is culturally competent and reaches a diverse audience.
    • Developing and promoting “One-Stop Systems” that would enable families to access and navigate complex systems of care for individuals with Autism Spectrum Disorders (ASD.)
    • Improving community-based supports for individuals with ASD.
    • Empowering families and caregivers with greater knowledge, supports, and advocacy.
  2. Early Identification & Intervention
    • Effectively screening for ASD using scientifically validated methods as part of routine well-baby visits.
    • Improving assessments, referrals and interventions for ASD.
    • Improving health plan coverage for ASD screening, diagnosis, assessments, interventions, and treatments.
  3. Comprehensive Services Across Systems of Care
    • Establishing statewide “best practices” for the diagnosis and intervention of ASD.
    • Defining the roles and responsibilities of regional centers, school districts, health plans, and other systems of care in providing services for ASD.
    • Improving the collaboration and integration of services between regional centers and school districts.
    • Establishing an integrated and seamless system of care from birth to age 5 years.
  4. Training & Professional Development of Service Providers
    • Providing multidisciplinary training teams with “Best-Practices” expertise.
    • Providing appropriate training, curriculum and supports to teachers and paraprofessionals.
    • Establishing access to validated best practices and providing ongoing training.
    • Establishing innovative approaches to professional development that include a major focus on meeting the needs of underserved communities.
  5. Helping Adults with ASD Live, Work, and Prosper in Inclusive Communities
    • Providing safe, secure, affordable housing with appropriate support systems such as transportation and appropriate social venues.
    • Expanding transitional services such as vocational training and post-high school education that will improve the opportunities for individuals with ASD to achieve and maintain meaningful employment.
    • Providing effective training and supports to police officers, first responders, and other public officials so as to enable them to deal appropriately and safely with individuals with ASD.
  6. Holding Systems Accountable for Delivering Services & Improving Outcomes
    • Identifying ASD as a key public health issue and establishing the infrastructure that is required to address the challenges of this problem.
    • Establishing a voluntary, comprehensive ASD registry.
    • Evaluating and considering ways to improve existing systems for conflict and dispute resolution.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 4:32 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00127] NOT-MH-08-016
Importance: High
Attachments: ASHA Comments - IACC RFI Autism Reseach 9-08.pdf

Attached in a PDF document are comments from ASHA to the Interagency Autism Coordinating Committee regarding high–priority questions and issues related to services and supports to individuals with autism spectrum disorders (ASD).

[redacted personally identifying information]
American Speech–Language–Hearing Association (ASHA)
[redacted personally identifying information]

[redacted personally identifying information]

September 19, 2008

The Interagency Autism Coordinating Committee NOT-MH-08-016 iaccservices@mail.nih.gov

Dear Committee:

The American Speech-Language-Hearing Association (ASHA) is pleased to have the opportunity to provide comments to the Interagency Autism Coordinating Committee (IACC) about high-priority questions and issues related to services and supports to individuals with autism spectrum disorders (ASD). ASHA is the professional, scientific, and credentialing association representing more than 130,000 speech-language pathologists, audiologists, and speech, language, and hearing scientists qualified to meet the needs of the estimated 49 million (1 in 6) children and adults in the United States with communication disorders, including those with ASD.

Whenever research involves a communication disorder, speech-language pathologists and audiologists have specific and unique education and expertise that enable them to make important scientific contributions. Difficulties with language and social communication are among the hallmark characteristics of children with ASD. More treatment efficacy and effectiveness studies related to indirect and direct intervention procedures are needed to help determine the most appropriate speech-language pathology and audiology services for children and adults with ASD. High quality, large scale studies can guide decisions about types of intervention, optimal settings, frequency, and intensity and can be used to evaluate outcomes and modify intervention strategies. Data can be used to determine subgroups and to help find the best matches between child and family characteristics, developmental levels, learning profiles, parental beliefs, cultural values, treatment philosophies, and strategies. Clinical practice research at different phases, including longitudinal studies, can inform short and long term outcomes for individuals with ASD. Careful attention to the science of dissemination also is critical to make certain that families and professionals are guided by scientifically based information.

ASHA is committed to advancing the knowledge base in prevention, early detection, identification, diagnosis, treatment, and rehabilitation of communication disorders. Ongoing research should deepen our understanding of the nature of ASD, of prognostic indicators, and of long-term outcomes; it also should fine-tune procedures and protocols used for assessment and intervention, as well as models of service delivery. We are dedicated to providing services that are based on the highest quality of evidence available to make effective communication, a human right, accessible and achievable for all.

We applaud the IACC’s efforts to identify specific research initiatives on ASD services and supports. Thank you for the opportunity to provide these comments, and we look forward to working with the IACC on its Strategic Plan for ASD research. If you need additional information, please contact [redacted personally identifying information].

Sincerely,

[redacted personally identifying information] www.asha.org [redacted personally identifying information]

Comments by the American Speech-Language-Hearing Association (ASHA)

Comments are based on ASHA policy documents, including Guidelines for Speech-Language Pathologists in Diagnosis, Assessment, and Treatment of Autism Spectrum Disorders Across the Life Span, available from www.asha.org/policy.

Given that the core features of ASD revolve around social communication and language use, the field of speech-language pathology should take a prominent role in future research on ASD. Many questions regarding communication issues such as language acquisition and loss, speech production, the development of social communication, and how to best integrate the use of augmentative and alternative communication (AAC) in individuals with ASD remain unanswered.

There is empirical support demonstrating the effectiveness of a range of approaches for enhancing communication skills of individuals with ASD along a continuum from behavioral to developmental. There are no group design studies directly comparing the effectiveness of different approaches using randomly assigned, matched control samples with sufficient sample sizes and adequate statistical power. Therefore, evidence that any one approach is more effective than another approach is not available to date. Investigations designed to compare the effectiveness of specific interventions and to identify variables that predict response to treatment would help determine whether particular individuals or subgroups would benefit from different intervention strategies.

Intervention research is not yet available to predict which specific intervention approaches or strategies work best with which individuals with ASD. However, it is generally acknowledged that no one approach is equally effective for all individuals with ASD, and not all individuals in outcome studies appear to benefit to the same degree. Single-subject treatment studies and group designs are needed to identify characteristics of individuals with ASD that predict response to specific treatments. For clinicians to determine whether an individual with ASD is benefiting from a particular treatment program or strategy, valid and reliable methods are needed to measure that individual’s progress. Research that could provide standardized protocols for reliably measuring the quality of social interaction is needed.

Research also is needed to provide methods, such as questionnaires, that could be used to validly examine the effects intervention on quality of life for individuals with ASD and their caregivers. As the status of most research related to intervention for individuals with ASD may be most accurately characterized as exploratory, it may be premature to invest in costly randomized controlled trials (RCTs) presently. There is much foundational research that needs to be done so that RCTs will become feasible in the future. For example, the development and testing of valid and reliable outcome measures is needed as well as studies that lead to well-described and replicable treatment approaches. Support for early stage research and feasibility studies is arguably the highest priority at this point in time so that future research will proliferate on a solid foundation.

Future research should devote more attention to the needs of culturally and linguistically diverse populations who have family members with ASD. Although research indicates that having families play a critical role in the intervention process is an important part of effective programs, research is not available yet to indicate which of these services and support strategies or what combination is most effective across culturally and linguistically diverse populations.

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 4:48 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00128] Response to NOT-MH-08-016

To the Honorable Members of the Services Subcommittee: I am a self–advocate and a member of the Autistic Self Advocacy Network. I am concerned about the high rates of unemployment and underemployment in the autistic population and would like to see more research into the causes and remedies.

One area that I believe needs to be addressed is career planning services. Although autistic youths often have very specific interests and skill sets, they sometimes have difficulty understanding how their interests and abilities would fit into the job market. As a result, they may not choose appropriate courses of study or may be unaware of apprenticeship programs from which they could benefit.

I would like to see funding provided for research studies to assess the effectiveness of various approaches to career planning for autistic high school students. Such approaches could include summer internships for autistic students, school–based vocational training programs, individual meetings with guidance counselors to evaluate skills and discuss career options, a semester course that provides information on careers in today’s economy, and career fairs. In addition, autistic students should be counseled regarding accommodations for their particular needs and how to ask for them. Follow–up studies should be conducted to determine the participants’ subsequent employment status and levels of job satisfaction.

Another part of the problem, regrettably, is employment discrimination. Autistic people often encounter prejudice in the workplace because of stereotypes and misunderstanding. More research into the extent of employer prejudice and effective approaches to combating it, such as developing informational resources to assist employers in making unbiased decisions and to advise autistic workers on understanding and asserting their rights, would be helpful.

Sincerely,

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 4:58 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00129] IACC Request for Information on Services & Support

Dear sir or madam,

I’m writing you today on behalf of my self and the many other autistics individuals of the United States in response to your request for the public’s comments on the IACC and NIMH polices on funding for autism related research. I do not doubt that you received many letter from many concerned parents pleading with you for support of one kind or another as well from many other individuals with concerns about the safety of vaccines (I’m sure you will be happy to know this not one of those letters). I’m writing you today on behalf of my self and the many other autistics individuals of the United States to give you list of research topics and services that will be useful to individuals with all forms of autism spectrum disorder. This letter will cover several different topics from education to employment and it is my hope that suggestion in this letter are helpful not just the good people of IACC and NIMH but all those who read it.

I would like to begin this list with education, Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address to implementation so that teachers, students, parents, and other education professionals are up–to–date and have access to information, training, technological resources such as AAC, and other resources.

Another issue of interest would be access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding. Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care. Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.

Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should also be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure or because other types of housing are unavailable or underutilized. Research needs to include cost–effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.

One epically important topic is Transition of autistic students from secondary education to either higher educational institution or the work force. Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have no where to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place. Employment though is perhaps the single most important point of this entire letter if should take anything away from this pleas let be the ideas that employment for autistic adults is sorely needed resource and that Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling.

Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.

Inclusion in the community is another important issue that needs to be addressed. Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community–based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.

The issues of older adults should also be addressed. Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems. Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken.

Research into the effect of common medications, including for non–autistic–related health problems such as diabetes, should be undertaken. Because of the possibility of paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community–based participatory research can be invaluable in determining the best ways to access health and other care.

Money is major issue for all in the autism community; across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.

Guardianship is key issue for many individuals with “classic” or “Low functioning” autism. Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one–size–fits–all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.

I appreciate you taking the time to read this letter and my apologies if I seem to ramble on in place. It is my hope that we can continue to work together in future to create a better place in society for all autistic individuals.

Thank you for your time
[redacted personally identifying information]
Learning Effectiveness Program
University of Denver

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 4:57 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00130] RFI NOT-MH-08-016
Attachments: RFI Response.pdf

Good afternoon,

Please accept the attached document, submitted on behalf of Ohio’s Interagency Work Group on Autism, in response to the Request for Information for priorities for the IACC’s Services Subcommittee for Autism Spectrum Disorders.

Thank you–

[redacted personally identifying information]

Ohio Department of MR/DD
Office of Children and Family Supports
[redacted personally identifying information]

The mission of ODMRDD is continuous improvement of the quality of life for Ohio citizens with developmental disabilities and their families.

All or part of this electronic mail transmission may contain confidential information. If you are not the intended recipient, you are hereby notified that any retention or dissemination of this information is strictly prohibited. If you have received this e–mail in error, please notify [redacted personally identifying information] and delete all copies of this e–mail from your system.

NOT-MH-08-016 Request for Information: Priorities for the IACC Services Subcommittee for Autism Spectrum Disorders

Submitted by: Ohio’s Interagency Work Group on Autism

Under the leadership of the Ohio Department of Mental Retardation and Developmental Disabilities, an Interagency Work Group (IWG) on Autism was convened in January 2008. This Work Group, comprised of representatives from the Governor’s office and cabinet agencies, works to assure that Ohio’s plan to serve individuals with autism is effective, broad-based, and an integral part of the State’s efforts for all individuals with developmental disabilities. Ohio’s Interagency Work Group on Autism submits the following high priority issues for the IACC’s consideration:

Early and effective identification

  • Build standards of practice for early developmental screening within the medical community for early identification of autism, and effective referral to services and supports within local communities

Evidence-based intervention models for children

"Over the past decade, the science related to developing and identifying “evidence-based practices and programs” has improved—however the science related to implementing these programs with fidelity and good outcomes for consumers lags far behind. As a field, we have discovered that all the paper in file cabinets plus all the manuals on the shelves do not equal real world transformation of human service systems through innovative practice. While paperwork and manuals do represent what is known about effective interventions, these tools are not being used effectively to achieve behavioral health outcomes for children, families, and adults nationally. Clearly, state and national policies aimed at improving human services require more effective and efficient methods to translate policy mandates for effective programs into the actions that will realize them." National Implementation Research Network

  • Research effective intervention/treatment models that can be supported and sustained through the state and local service delivery systems that are high quality, yet affordable and cost effective
  • Develop strategies to build systems of care that incorporate a focus on the community and natural settings, the importance of wraparound services, and the use of multi-disciplinary, team based, clinically supervised evidence-based services for children
  • Identify promising practices related to integrating treatment models (ex. ABA for intensity, PLAY for socialization) and how one moves through a truly integrated continuum of interventions (ex. intensive behavioral intervention, developmental skill building, socialization and communication, physical development) with studies to demonstrate how data informs treatment phases throughout the lifespan
  • Identify mechanisms to expand or manage treatment capacity issues

Social Skills training

  • Develop standards to support the infusion of social skills training, beginning at the stage of early intervention, into existing educational and service provision practices
Unified individual program plans

  • Develop individualized program plans for individuals that unify all services and supports that are paid and unpaid, beyond Medicaid (this includes guidance on how to best structure such plans where all needed services are noted, so for example, it is clear that Medicaid HCBS services are not supplanting IDEIA services)
  • Develop blended and braided financial mechanisms to remove silo-based barriers to effective, highly integrated, and timely interventions

Transition support from school to work or higher education

  • Create support models for both employees and employers within the work environment to assure successful transition, and sustain employment
  • Identify supportive approaches to assure successful transition from high school to institutions of higher learning

Regional models of service delivery

  • Build effective regionalization and partnerships to reach those areas of the state that are underserved, and close the disparity of services and supports among regions of the state

Support for families and caregivers

  • Provide quality information to families to assist them in choosing and accessing intervention and treatment options that are effective, affordable, and supported through valid research
  • Create options that include comprehensive individualized advance crisis response planning and capacity
From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 5:15 PM
To: IACC Services (NIH/NIMH)
Cc: [redacted personally identifying information]
Subject: [Comment 00131] NOT-MH-08-016
Attachments: NIMHRFI.doc

please see attached document

[redacted personally identifying information]

This electronic transmission may contain information that is privileged, confidential and exempt from disclosure under applicable law. If you are not the intended recipient, please notify me immediately as use of this information is strictly prohibited.

Being a parent of a child with autism requires one balance a heavy emotional load with the necessity of sorting through the abundance of information shared by professionals, parents as well as plastered across the airwaves and internet. Making sense of educational service delivery options and goodness of fit for each child is another often overwhelming process, yet also where the greatest implications for the child’s outcomes are seen. Countless studies have shown that a child’s potential is vastly impacted by the quantity and quality of their educational services, and a lack of appropriate therapists and teachers can mean lifelong impact not only for the child, but for the family as a whole.

Providers at Boston Medical Center’s Pediatric Assessment Clinic (PAC) are fortunate to see a patient population across all socio-economic and racial lines. We know that all of our parents, despite finances, struggle. However, for those patients who come from low-income, non-English speaking, culturally diverse, urban environments, the systems and obstructions to quality service providers are all the much greater. Urban schools tend to have a limited supply of therapists, special education teachers and aides, and are forced to employ professionals who are untrained in teaching methods specific to autism.

Training initiatives that are targeted to educate young professionals that provide incentives like tuition remission and encourage them once trained to stay and work in the public sphere rather than join the more lucrative private sector could be key solutions to breaking down some of these barriers. Training initiatives that target culturally and linguistically diverse students will allow education to reach those who are as of yet, left outside of Free and Appropriate Public Education.

Children with autism should not be deprived the cost of high quality education due to economic and racial disparities. High-quality education should be made accessible and affordable, regardless of the cost.

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 5:51 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00132] RFI# NOT-MH-08-016
Attachments: RFI # NOT-MH-08-016.doc

Please find attached a response to RFI # NOT–MH–08–016.

Sincerely,

[redacted personally identifying information]
New England Center for Children
[redacted personally identifying information]

Response to RFI # NOT-MH-08-016

The National Institute of Mental Health at the NIH has been given the responsibility of providing direction for autism-related programs and has done an outstanding job in outlining the areas of research needs and has established networks for information exchange among our top autism researchers. However, the children and families currently affected by autism may not benefit from these endeavors any time soon. The committee has noted that there is a lack of adequately trained providers of services to individuals diagnosed with autism spectrum disorders and a lack of education, training, and support for families and professionals providing services. This prevents a significant number of individuals diagnosed with autism from receiving effective interventions. Attention must be directed toward making effective, empirically-validated educational and treatment methodologies readily available to individuals diagnosed with autism. While there is no question that further research is necessary to compare and develop the most cost-effective service delivery models, there is sufficiently sound scientific research showing that there are effective ways of helping those affected by autism now.

Applied Behavior Analysis has been shown to be an effective means of teaching persons with autism communication skills, social and play skills, as well as more traditional academic and pre-academic skills. Behavior analysts have also developed numerous effective intervention strategies for repetitive behavior and other more severe problem behavior such as self-injury and aggression. Nine group design studies support this approach as a general model of service delivery and there are over 800 studies demonstrating effective educational or clinical gains for specific behavioral deficits and excesses of persons with autism through behavior analytic techniques. However, implementation of sophisticated behavioral treatment requires highly trained teachers and therapists.

Our recommendation to the Services Subcommittee of the IACC is that research be supported that investigates methods of training teachers and caregivers to implement empirically-validated teaching and treatment procedures. A critical component of this research should include demonstration that the care providers, teachers and parents, acquire the necessary skills to effectively teach children. It should also include verification that the caregiver’s use of these procedures produces clinically important change for the individuals being served. In addition, we recommend that research be supported that involves the development and empirical examination of comprehensive curricula for teaching individuals diagnosed with autism. This is a substantial task and a database of this sort must include flexibility in the teaching procedures to meet the varying needs of persons with autism. The development and validation of said curricula, perhaps as a part of a demonstration project, should be a prerequisite for large-scale dissemination of teaching technology and we feel this is a top priority.

Sincerely,

[redacted personally identifying information] New England Center for Children [redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 7:28 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00133] More research for girls / women

Hello, I am 32 year old mother who has AS, as does my 8 year old son. I wasn’t diagnosed until a few months ago. My daughter is 6 and she shows many signs of AS as well. She is currently being assessed, and this is what worries me. No one would have dreamed that I had AS. I hid it too well. My life has been very difficult and I attribute that to the lack of knowledge about AS in females.

The proof is in the numbers when it comes to the amount of boys who are diagnosed as opposed to girls. Early intervention would have helped me so much had someone realized what I was going through. As I go through a possible diagnosis with my daughter, I feel that I will need to walk the interviewer through the diagnosis of a female. I had to do this with my psychologist, but I didn’t mind. So please, call me or e–mail if you want more insight. I have experienced about every aspect of the AS or ASD experience. I want to be involved.

[redacted personally identifying information]

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 7:43 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00134] NOT-MH-08-016: . IACC Services RFI . re: IACC Services RFI

[redacted personally identifying information]

Dear IACC Services Subcommittee,

Information that is meant for autistic adults must be delivered in a way that is accessible for them. This might mean building in a way for autistic adults to get help with filling out the form, preferably one that doesn’t require face to face interaction with a stranger in a building that is difficult to navigate. Barriers are placed for autistic people in such a way that they can not access the help they need. This is inhumane in the same way as it would be inhumane to require a paraplegic to hoist himself up a few flights of stairs with his arms in order to apply for help related to his inability to walk.

To repeat: Information that is meant for autistic adults must be delivered in a way that is accessible for them. This might mean building in a way for autistic adults to get help with filling out the form, preferably one that doesn’t require face to face interaction with a stranger in a building that is difficult to navigate. Barriers are placed for autistic people in such a way that they can not access the help they need. This is inhumane in the same way as it would be inhumane to require a paraplegic to hoist himself up a few flights of stairs with his arms in order to apply for help related to his inability to walk.

Again, remember: Information that is meant for autistic adults must be delivered in a way that is accessible for them. This might mean building in a way for autistic adults to get help with filling out the form, preferably one that doesn’t require face to face interaction with a stranger in a building that is difficult to navigate. Barriers are placed for autistic people in such a way that they can not access the help they need. This is inhumane in the same way as it would be inhumane to require a paraplegic to hoist himself up a few flights of stairs with his arms in order to apply for help related to his inability to walk.

Once more: Information that is meant for autistic adults must be delivered in a way that is accessible for them. This might mean building in a way for autistic adults to get help with filling out the form, preferably one that doesn’t require face to face interaction with a stranger in a building that is difficult to navigate. Barriers are placed for autistic people in such a way that they can not access the help they need. This is inhumane in the same way as it would be inhumane to require a paraplegic to hoist himself up a few flights of stairs with his arms in order to apply for help related to his inability to walk.

In case the IACC missed it: Information that is meant for autistic adults must be delivered in a way that is accessible for them. This might mean building in a way for autistic adults to get help with filling out the form, preferably one that doesn't require face to face interaction with a stranger in a building that is difficult to navigate. Barriers are placed for autistic people in such a way that they can not access the help they need. This is inhumane in the same way as it would be inhumane to require a paraplegic to hoist himself up a few flights of stairs with his arms in order to apply for help related to his inability to walk.

Let’s not forget: Information that is meant for autistic adults must be delivered in a way that is accessible for them. This might mean building in a way for autistic adults to get help with filling out the form, preferably one that doesn't require face to face interaction with a stranger in a building that is difficult to navigate. Barriers are placed for autistic people in such a way that they can not access the help they need. This is inhumane in the same way as it would be inhumane to require a paraplegic to hoist himself up a few flights of stairs with his arms in order to apply for help related to his inability to walk.

Resources need to be accessible for autistic people: Information that is meant for autistic adults must be delivered in a way that is accessible for them. This might mean building in a way for autistic adults to get help with filling out the form, preferably one that doesn’t require face to face interaction with a stranger in a building that is difficult to navigate. Barriers are placed for autistic people in such a way that they can not access the help they need. This is inhumane in the same way as it would be inhumane to require a paraplegic to hoist himself up a few flights of stairs with his arms in order to apply for help related to his inability to walk.

Autistic people are parents. It is vital the this be clearly understood. Parents of autistic people are frequently autistic people themselves, so any information aimed at "parents" also needs to be accessible to autistic people. Or: Information that is meant for autistic adults must be delivered in a way that is accessible for them. This might mean building in a way for autistic adults to get help with filling out the form, preferably one that doesn't require face to face interaction with a stranger in a building that is difficult to navigate. Barriers are placed for autistic people in such a way that they can not access the help they need. This is inhumane in the same way as it would be inhumane to require a paraplegic to hoist himself up a few flights of stairs with his arms in order to apply for help related to his inability to walk.

Things that seem easy for others might be impossibly difficult for autistic people. The best way to deliver help to autistic adults needs to be researched and documented and used.

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 9:53 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00135] NOT-MH-08-016: IACC Services RFI . re: IACC Services RFI

[redacted personally identifying information]

Dear IACC Services Subcommittee,

I am an autistic adult with an autistic child in public special needs preschool. My son has formerly been in a full inclusion preschool. I would like to see studies done to determine whether the public schools services are meeting the needs of autistic children. I would like to know that when new therapies are available that my sons teachers have the training and knowledge and tools to give him the best learning experience. Lights sounds and environment can be overwhelming at times. I would like to see studies that determined the best environment for autistic people so that their experience can be a pleasurable one, that they enjoy being in. This way they can get the most from their school experience.

I would like to see research into how to help autistic adults who may have difficulties applying for for services that may help us like health care. For me simply picking up the phone to make an appointment can be difficult. I have insurance but for someone who does not, it would be very difficult I imagine to take the necessary steps to to receive medical dental or mental heath services. I would like to see research into how people on the autistic spectrum can be housed, if we were in need of housing assistance, other than in large residential settings.

I would like to see studies on how best to help autistic people once we are no longer are school age and move into adulthood. It would be nice if there was something in place already, as we continue on to higher education or independant living, that would accomadate our diverse needs for assistance.

I would like to see studies that would help people on the spectrum find meaningful careers, what accommodations might help incorporate us into the workforce. Information obtained from research designed to diagnose or treat autism could be used to educate employers and job counselors on the specific strengths and abilities that autistic people have. This might help overcome some of the pre–conceived ideas that potential employers may have when considering us for employment.

I believe that safety is a concern for many people on the spectrum. I would like to see studies on how best to educate the professionals like, teachers, police, firemen, and other EMT’s on how to ensure the safety of those who may not understand danger,get lost,or be unable to communicate their needs.

I would really like to see research in how to help many of the autistic adults who may remain undiagnosed. Some could be in institutions with other diagnoses. Some could be in prisons. Some could be in homeless shelters or on the streets. Some may have problems with alcohol or substance abuse. I would love to see a study that tried to reach these people and provide them with treatment and services.

I would like to see a study to determine if common medications to treat illnesses may effect autistic people differently then typical people. It is possible that common medications may have adverse reactions to some people on the spectrum.

I think it is important to that a study looks into the financial needs of families with autistic children and adults on the spectrum. How families and individuals will pay for the cost of treatment, interventions, medications, and therapies. Help for us to manage our finances pay our taxes, plan for the future, or set up an estate for our children.

Finally, I think it is important to study guardianship. Many people on the spectrum are high functioning and may only need a little help in this regard. Others will need more help. I don’t know how much help my son would need when one day I am no longer around to help him. Guardianship needs to be determined based on each individual. Research into this should employ the assistance of autistic adults to help establish ethical guidelines.

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 10:02 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00136] NOT-MH-08-016

Autism needs to be reclassified as a medical condition rather than a mental health condition. Primary health care providers including pediatricians should be directed if not required to do a full panel of lab testing any time a child is showing developmental delays. These tests should include: blood and urine amino acids, organic acids. Blood metabolic panel, full CBC, fatty acids, lactic acid, pyruvate, and complete hormone panel. Urine should include porphyrins. Physicians should be required to provide information regarding autism treatments as conducted through Autism Research Institute, National Autism Association, and Defeat Autism Now! There should be higher insurance payouts ($400 annual payment, $150 payment up to 11 times per year) from both private and government to those who have certification from the American Medical Autism Board so clinicians don't go broke trying to provide health care to those with autism.

Those found to have autism should automatically be able to receive medicaid services for family incomes of less than $100,000, regardless of state individual qualifications. In addition, private and government insurance should provide mandatory 40hr/wk ABA payment high enough for providers to afford to receive. Private and government insurances should also provide up to 4 hrs/wk of speech, 3 hrs/wk of occupational/physical therapy, as well as up to 2 hrs/wk of feeding therapy.

Educationally, any government school should be required to offer up to 30hrs/wk of ABA services simply from an autism diagnosis, not only after parents have sued for years. School systems giving certificates of completion to any student with autism should be financially penalized for failing to educate the student to the level of obtaining a general education diploma.

Finally Federal Vaccine Court should be required to hear a case/issue a ruling within 36 months of family filing with vaccine court. It should not have to take 10–12 years to get a ruling.

Thank you,

[redacted personally identifying information]

It is a common experience that a problem difficult at night is resolved in the morning after the committee of sleep has worked on it.” – – John Steinbeck

From: [redacted personally identifying information]
Sent: Friday, September 19, 2008 11:31 PM
To: IACC Services (NIH/NIMH)
Subject: [Comment 00137] Input to RFI on Supports and Services

My name is [redacted personally identifying information]. I am an Asperger adult and the father of an autistic son and a daughter in the broader autism phenotype.[redacted personally identifying information] 4 autism organizations: [redacted personally identifying information] the Asperger’s Association of New England (“AANE”, http://www.aane.org), [redacted personally identifying information] the Autism National Committee (“AutCom”, http://www.autcom.org), [redacted personally identifying information] chapter of the Autism Society of America (“ASA”, http://www.autism–society.org), and[redacted personally identifying information] Autism Network International (“ANI”, http://www.ani.ac).

My involvement with AutCom leads me to the first item I think needs the IACC’s attention: better access to augmentive and alternative communication (AAC). Since its inception in 1990, AutCom has historically focused on the human and civil rights of the most severely handicapped autistic people, and on their access to communication. Many in the AutCom membership, [redacted personally identifying information] are AAC users. I have seen first–hand how critical to quality of life the establishment of a reliable, extensible, and respected medium of expressive communication is. With it, doors open to education, community inclusion, employment, and management of one's own life. Without it, one is vulnerable to so many pitfalls: from inferior medical care, to abuse, to maladaptive behavior engaged in when no other alternative exists to stop or mitigate something undesirable, and consequences thereof.

There is too much red tape, not enough funding, and not enough training of providers, teachers, caseworkers, employers, and others who could and should be involved in the distribution, consumer training, and provision of AAC devices to individuals and families. AAC devices need to be made more affordable. The bureaucratic obstacles holding the volume of the AAC device market to such small levels that market forces do not effectively lower prices need to be removed.

The second item I think the IACC needs to tackle is employment. The degree of unemployment, and *underemployment* among adults on the autism spectrum – – something I see far too much of in the population served by the AANE – – is unacceptable. We need to fund and staff programs that go beyond merely helping people get hired. Those programs need to work *with employers* – – HR and senior management – – to make changes in corporate culture, diversity sensitivity, and the workplace environment that remove the obstacles that trip people on the autism spectrum up after they are hired, and prevent them from retaining and advancing in their employment.

The Catch–22 in which many adults on the spectrum find themselves with respect to health insurance, when considering employment options, needs to be addressed. SSI and SSDI regulations that govern eligibility for Medicaid and Medicare as healthcare insurers are far too limiting. Too many adults on the spectrum cannot move off of public assistance into entry–level employment because doing so will cause them to lose this source of health insurance, without adequate replacement by the employer.

Another thing I want to bring to the IACC–s attention is the need for alternatives to guardianship as it is generally currently defined. Current formulations result in a blanket rendering of the individual under guardianship ineligible for far too many facets of adult life, and permanently so, with a heavy legal burden of proof in order to get rescinded later in life. Young adults on the spectrum may need to provide their family or support people with access to medical records blocked by HIPAA, and access to educational records blocked by FERPA; they may need to have protection from entering into legal contracts without review by family or support people. Records access can be provided with powers–of–attorney, but a recognized legal instrument that mandates cosignature on contracts, with clear and unencumbered means for later recission by agreement of the cosigning trustee(s), is needed. Such a set of instruments, executed in lieu of guardianship, would leave important functions of adult life – – such as voting, driving, etc. – – unencumbered.

Finally, I want the IACC to address issues in law enforcement as it relates to individuals on the spectrum. Law enforcement and first responders need better training in working with the wide spectrum of autistic individuals? verbal and nonverbal. Judges and prosecutors need better training in understanding the factors which may lead young adults on the spectrum, in particular, into unintentional violation of laws carrying inflexible consequences far too harsh for the circumstances (for example, anti–terrorism and anti–child–pornography laws).



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