Interagency Autism Coordinating Committee logo


Main content area.

Strategic Plan Question 5: Where Can I Turn for Services?



Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. Gaps and underrepresented research areas.
Where can we turn? Who will pay for lifelong care? Actuarial scientists from Social Security should be included in the IACC panel of agency experts. Actuarial scientists may be more aggressive at seeking environmental causes of the increased prevalence of autism. They might bring a new perspective on what kind of research could more quickly lead to prevention. Another way to involve actuarial scientists would be to require long-term-care insurance be purchased by parents of every child born. This should take priority over banking of umbilical cord blood. Banking of umbilical cord blood is dangerous, because it may prevent full natural transition from fetal to neonatal respiration. Placental blood is respiratory blood and by nature's plan should be transferred to the capillaries surrounding the alveoli. Otherwise blood may be drained from the brain for the more immediate needs of the pulmonary system.

b. New opportunities.
Housing and food are basic human needs, and our capitalistic democratic society is clearly failing to ensure these needs are met for everyone. Financial bailouts for mortgage lenders are the disgrace of the current American system. The right to private ownership should not be denied to those fortunate enough to be able to accrue sufficient assets to provide for their own needs. However, we need socialism to the extent required to provide for those who are disabled and unable to survive without assistance. I suggested to my legislators that rather than bail-out banks, they should give the money to Marriott Hotels to build enough Residence Inn Hotels to ensure housing for everyone. I am sure entrepreneurs at Marriott would know how to take the money, build the hotels, and eventually make a profit by encouraging those they housed to work toward shared ownership of their homes–providing jobs as housekeepers, cooks, maintenance, grounds keepers, etc. Please look into this.

c. Research priorities.
Put the $16,700,000 and $7,000,000 proposed in the Strategic Plan for evidence based services and effective interventions in community settings up for bid. Encourage companies like Marriott to consider what opportunities this might provide for them. Encourage partnerships between companies like Marriott and current community service providers, like Vinfen in Massachusetts. Put out a bid for real and thoughtful new strategies. In the following section on what the future holds, you state that little is known about autism spectrum in the criminal justice system. I work in the Massachusetts Department of Correction, and know that statistics can be gathered. First, autism and Asperger spectrum disorders can clearly be seen as part of a wider spectrum of developmental disability. Further, many physical problems like gastro-intestinal disorders, asthma, and diabetes are clearly evident to direct care-givers. Note also: Incarceration is the costliest kind of long-term care.

Respondent 0016

a. Gaps and underrepresented research areas.
Microboards (small board of directors) are excellent ways for people to get to know my son and bridge relationships out in the community.

c. Research priorities.
Communication support good employment support good support for connecting people with autism to the community through education, employment, volunteering, recreation. Helping them define and live out a good life. Its not complicated. It takes care.

Respondent 0022

a. Gaps and underrepresented research areas.
For many there are no services at all - no good education, no respite, no doctors willing to manage the individual, no dental care, no adult care options and a government attitude that basically says community care means no care.

b. New opportunities.
Actual services are needed, there is plenty of research showing the need for services. There is not really any need to document the failure of care any further. Put the money into care.

c. Research priorities.
Prioritize giving care not "researching" the need for care and then not providing any.

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
The Autism Mercury Yahoo group.

Respondent 0024

a. Gaps and underrepresented research areas.
Unfortunately our state of New Jersey is unable to provide services for many of those in need, including day programs, transportation and housing.

b. New opportunities.
The states must partner with parents who are willing to meet them halfway to provide residential services for their adult children.

c. Research priorities.
The NJ Division of Developmental Disabilities must be investigated and overhauled because it does not work. Case managers do not answer their phones and requests are ignored. In most cases, parents need to have a lawyer to help them get services and even then there is a fight.

Respondent 0029

a. Gaps and underrepresented research areas.
What is the workforce need for trained direct care staff to care for adults with autism? What are the best methods for training and supervising staff to care for adults with autism? What services are available for adolescents and adults to help them lead meaningful lives?

c. Research priorities.
There is too little research into services for adolescents and adults. Too much emphasis on early intervention to the detriment of all other age groups.

Respondent 0031

a. Gaps and underrepresented research areas.
There are no effective laws that require services for adults with autism. If the laws are in effect then they are not enforced. Service providers will not provide care unless an adult qualifies for Medicaid. If someone has just a little too much money then they can't get any help at all, no matter how disabled they are.

Respondent 0035

a. Gaps and underrepresented research areas.
Research needs to be done on the quality of services provided by ALL people working with autistic children. A rating should be given to the service providers based on quality of service using parental report, monitoring of methodology - data collection, number of hours provided, etc.

b. New opportunities.
Develop a rating system similar to how restaurants are rated using health inspectors so that parents know what service providers provide quality services

c. Research priorities.
It is extremely important that parents have a way of knowing which service providers provide quality effective services and which service providers do not. This will help raise the quality of services provided by service providers and help parents find the most effective service. Time is of the essence and parents should not be wasting their time with poor service providers

Respondent 0037

a. Gaps and underrepresented research areas.
Your kidding right. I have to lie and my Dr. have to lie so that my two boys can get speech therapy. Everything else comes out of my wallet house 401k and everything I sell.

b. New opportunities.
How about covering it with insurance.

Respondent 0042

c. Research priorities.
There are areas where there are no services at all. There are services who are staffed by people who do not understand autism. There needs to be more services offered for people of every age on the spectrum. They need to be better quality services too. It would be my recommendation that this and the following question should be priorities over prevention research (and anything about vaccines as well).

Respondent 0046

a. Gaps and underrepresented research areas.
There seems to be many places to turn for help now. I see parents that are in denial though and do not turn for help when they should.

b. New opportunities.
There are Developmental Screenings now, which lead to receiving services earlier.

Respondent 0047

a. Gaps and underrepresented research areas.
Remove the pharmaceutical companies and insurance companies from the pockets of the government agencies that are supposed to be safeguarding the public from abuses.

b. New opportunities.
Acknowledge the "experts" as being on the payroll of the manufacturers of the vaccines and drugs that are being touted as the salvation of man, and realize that they are offering a skewed viewpoint.

c. Research priorities.
See above.

Respondent 0049

a. Gaps and underrepresented research areas.
Parent groups and advocacy organizations like the Association for Retarded Citizens. Parents new to autism need to know where they can find resources and support. For each new family, the process starts from scratch and wastes valuable time.

Respondent 0052

a. Gaps and underrepresented research areas.
There are resources out there, but often they are hard to access, or under- publicized. Many people that don't work with the disabled community or know someone who does have no idea where to start looking. Most people know about SSI or DSHS for example, but have no idea that both have programs designed to work with the Autistic community and so they struggle on without those supports. Few people ever remember hearing of the RSN either although anyone in the social services should know that that is terrific resource for locating appropriate services in your area. Second only to this is the availability low-cost of treatments for families who can't afford the thousands that are often required (and with our current economy there are more families in that category than ever before). Also there is a huge gap in available supervisory care (i.e. daycare) for ASD kids between 13 and 18, especially for lower functioning kids.

b. New opportunities.
In my opinion the greatest needs in this section are centered on being able to connect families that need it with the services available, but one of the biggest hurdles to that is the misinformation and lack of information that is made available from large (especially governmental) groups. In addition, treatments (be it therapeutical, nutritional, medical, financial or supportive) need to be more VISIBLE, accessible and affordable.

c. Research priorities.
Early treatment is the goal, so the priority here needs to be visibility and accessibility- How can we ultimately connect more families with the services that they need.

Respondent 0054

a. Gaps and underrepresented research areas.
Don't know.

b. New opportunities.
Get a job training program for adolescents on the spectrum and young adult

c. Research priorities.
don't allow Stephen Shore to serve on the IACC and don't allow him and John Robison to review research for publically funded grants.

Respondent 0055

a. Gaps and underrepresented research areas.
towns, counties and states do not share effective models of service delivery, or know where to look outside their own systems. At one extreme you have complete institutionalization /company store services run by agencies that are keen to maintain their operating revenue, at the other money follows the person driven services that empower the individual but may not provide guidance. What works? how to tell the people who implement delivery of services?

b. New opportunities.
Needs- Surging demographic/living longer, old service delivery methods will be financially unsustainable. Applied research in to best practices, and then initiation of financial incentives to follow them medical need - what is the general health care status of people with ASD? What ails them, what is obscured by our focus on their "condition"?

c. Research priorities.
Look at the population themselves, not so much the parents of younger children, but the adults with the disability as well. Ask them, if they can respond, help to find them if they are in congregate care settings they have lived in without being diagnosed.

Respondent 0059

a. Gaps and underrepresented research areas.
The numbers of those that are being hurt by vaccine goes up - there is going to have to be answers. To get those answers Tom Insel needs to resign since he is connected to the vaccine industry. I expect the federal government and this agency to do your best in not hindering the citizens of this great country in the pursuit their happiness. Giving them autoimmune diseases stops dreams, and their pursuit of happiness.

b. New opportunities.
*All doctors need to know how to treat ASD not as a mental disorder but a medical disorder. *Families that have severe disabled child need to be able to have a safe place for them. *Asperger's and PDD-NOS, needs very good support systems, SSI should be there to catch them in case they fall, and be there while they are struggling to make it. Right now even that is being grudgingly and slowly offered, most times refused. *Tom Insel and his brothers never had to worry about sheltered workshops, they got to follow their dreams and interest. Neither did any of them have to worry that their drivers license would be taken from them if the neurologist was slow about getting his approval to the transportation department. Neither do they have to take a pill twice a day to keep from having seizures, or be on a special diet to help with their seizures or health. Neither do they have to worry about money to pay for a neurologist since Richard sold off his share of the hib for 4 million.

c. Research priorities.
*Stop wasting resources and do an HONEST study that vaccines are the cause of the rise of autism. I have observed the cause and effect of vaccine injuries to three of my family members, I am just average - if it happened to me then it is happening to everybody else with autism. That would be 1 out of 150 or is it 1 out of 100 by now. In England it is reported to be 1 out of 66. * To train Medical doctors about the medical facts of autism. They need more information to be able to treat and to recognize potential vaccine injuries. Depakote for seizures is dangerous to autistic, yet many neurologists don't know it. It causes l-carnitine, and it would be nice to know if most autistic's l-carnitine levels are low to begin with? Just like Jett Travolta! Low carb diets should also be taught to physicians too. *Titers should be used more, *AND GET RID OF TOM INSEL.

Respondent 0063

a. Gaps and underrepresented research areas.
The government can not mandate this nor run it. What they CAN do is insure that there is support and monies available so the healthcare community will lead the charge in providing services. I live in Northwest Ohio. There is NO help in locating services. What we do find we have to drive at least 40 minutes to reach it.

Respondent 0074

a. Gaps and underrepresented research areas.
Good question. Where I live (Louisiana) there are NO publicly funded services. I have two graduated students doing ABA with my son, paid for out of pocket. All medical interventions paid for out of pocket.

Respondent 0075

a. Gaps and underrepresented research areas.
Services, to date, are usually based on misunderstood behavior, capabilities, and needs. Society and many businesses can benefit from, and pay well, highly specialized employees, with a drive to systematically produce accurate product, that fits well in its application. People living on the autism spectrum can often behave near normally and perform very well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately. Consequently, per the Life Needs hierarchy, we need to promote better understanding and performance of the positive aspects of autism, whereupon the drain of secondary problems will fade. An un-frustrated, un-apprehensive, and vigorous person with rare skills can cope considerably better with life. This translates into significantly less services and external resources required, and the person will likely have their own resources to pay for what they need, fostering a more independent life.

b. New opportunities.
An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills can usually cope considerably better with life than a person forced to emulate what he is not. Develop appropriate education requirements for highly specialized people. This means if they are able to advance themselves requiring them to go through what they don't need is wasteful. This also means, what they can't use, don't try to force them to use it. An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills, can usually be able to care for themselves and contribute to our economy.

c. Research priorities.
The Medical Psychological Academic Community Claiming Concern With Autism can learn a great deal from the communicative adults who have been trying to inform them of their error for a minimum of 40 years. An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills, can usually cope considerably better with life than a person forced to emulate what he is not. Referring to the hierarchy of Life Needs, (Refer to the works of Abraham Maslow) specifically fitted to autistic life, we find that training social skills is secondary to a positive Esteem-of-Self-and-Capability. i.e. A spartanly-brief statement, if you do not believe that yourself is useful-needed-wanted, there is little point trying to be or do what you can't. You turn defensively inward. Following the very name of autism. Conversely, if you know you are useful-needed-wanted, there is plenty of awareness and willingness to behave more normally.

Respondent 0077

a. Gaps and underrepresented research areas.
With the new health care initiative how will we make sure that any service options are effective and covered? How do we encourage independent or semi-independent autistic spectrum adults to seek access to these services?

b. New opportunities.
Research into the effectiveness of community groups run by persons on the autism spectrum by and for them, such as the Asperger Adults of Greater Washington (http://aagw.net This link exits the Interagency Autism Coordinating Committee Web site), with their issues.

c. Research priorities.
#1. Encouraging adults to take advantage of services.

Respondent 0095

a. Gaps and underrepresented research areas.
This is a huge problem. There needs to be a federally-run program in each State that is a clearinghouse for services, healthcare, respite, etc... Community Mental Health agencies are just not equipped to handle this.

b. New opportunities.
Look at some of the private and nonprofit groups.

Respondent 0102

a. Gaps and underrepresented research areas.
Again - it's the parents who have taken the lead on this, not the government agencies who should be helping these kids. So please direct parents to organizations like Generation Rescue, Talk About Curing Autism (TACA), Unlocking Autism, SafeMinds (Sensible Action For Ending Mercury-Induced Neurological Disorders), Autism One, the Autism Research Institute, and there are many more. These organizations were founded by parents and researchers who dare to challenge the status quo, and because they have, thousands and thousands of children have been saved from vaccine-induced autism - and some of those who were already injured by vaccines have recovered.

Respondent 0105

a. Gaps and underrepresented research areas.
The limited number of services available nowadays for persons with ASD, are largely ineffective, as the persons running them are not fully informed about ASD. Despite the plethora of research results gathered so far, there remains a huge gap between the research community and the rest of the population dealing with such persons on a daily basis (Hospitals, ER, doctors, nurses, educators, counselors, caregivers, psychologists, priests, police officers, lawyers, judges, etc.). IEPs who attempt to squeeze the child with autism to fit in, group speech therapies disregard the need for a one-to-one approach for many such children. Most of the population ignores the hidden strengths of persons with ASD, considering them as being somewhat aloof, within their bell shape glass; nothing could be further from the truth. After graduation from High School, there is virtual no support on hand and adults with autism struggle not only to survive but they also regress.

b. New opportunities.
If a special setting is not put in place and research results not put to use for the service of the autism community, then, sad to say, this research will be worthless for persons with ASD and their families. It would only serve to further the curriculum vitae of the researchers involved. Time is crucial and the key word in the pressing autism research. Another key word is Education of the population on what autism is about. Many family dramas, including suicide attempts are affecting adults with autism, as a result of wrong decision made by persons unaware of autism and lack of the lack of specialized and specific services. What is all the effort and money for school services worth, if afterwards an adult person with autism ends his life as a result of wrong evaluations, judges' decisions, police arrests, etc.

c. Research priorities.
It is not only the person with ASD that is in need of services, but also their family. The family in question is usually single-mother family, a father in denial, alienated or absent, as their autistic trait, prevents them from understanding or feeling any compassion for any person with ASD, even if that person is their own child, etc. More studies are needed to look closely at the family dramas, where the treatment, education, therapies and well-being of the person with ASD seriously deteriorate.

Respondent 0116

a. Gaps and underrepresented research areas.
Insurance companies should cover therapies that help children, including behavior therapy.

c. Research priorities.
Insurance companies should cover therapies that help children, including behavior therapy.

Respondent 0125

a. Gaps and underrepresented research areas.
I think the online resource guide available through Autism Speaks is pretty comprehensive and user-friendly. Rather than re-invent the wheel, the NIH and Medicare could urge service providers and state agencies to make sure their information is up to date in the database.

Respondent 0131

a. Gaps and underrepresented research areas.
There is a need for research in the area of surveillance of qualified professionals providing services to determine the background, training and credentials of individuals providing treatment to those with ASD and to determine the nature of the services that are currently being provided. What services are being delivered and by whom. There is a need for research that investigates the common practices in screening, assessment and treatment and how those practices are impacted by state and local interpretation of federal guidelines.

b. New opportunities.
Intervention research is not yet available to predict which specific intervention approaches or strategies work best with which individuals with ASD. No one approach is equally effective for all individuals with ASD, and not all individuals in outcome studies have benefited to the same degree. Larger group design treatment studies are needed to identify characteristics of individuals with ASD that predict response to treatment. For clinicians to determine whether an individual is benefiting from a particular treatment program or strategy, measurement of that individual's progress using systematic methods, such as in single-subject research design, is also recommended. . It will also be important to support the development of sensitive outcome measures that can be used for both single-subject and larger group designs.

c. Research priorities.
Research should be prioritized that characterizes current ASD diagnostic and service utilization patterns in community settings, examine the relationship between the likelihood of diagnosis and the services available for individuals with ASD, and that also evaluates the effectiveness of these services and intervention outcomes. The development of outcome measures and means of monitoring progress longitudinally should also be considered a high priority. ASHA believes that these priorities are necessary to accomplish in order to address the goal of determining the efficacy and effectiveness of various approaches to treatment and is therefore foundational to other research initiatives.

Respondent 0133

a. Gaps and underrepresented research areas.
The benefits of Early Intervention and the risks of "wait and see."

c. Research priorities.
Use parent information and wealth of knowledge as a jumping off point, not an aside. Gather all outcome studies for early identification. Look at good working models, ask the people who have to implement services and who receive them, NOT the researchers, and start from there. Much of ASD research is "top down" it needs to be "bottom up"

Respondent 0136

a. Gaps and underrepresented research areas.
The church. There are those who are well-acquainted with many of the issues surrounding this dilemma who have been praying and waiting patiently to assist.

Respondent 0141

a. Gaps and underrepresented research areas.
What I see missing is the involvement of people with ASD in researching efficacy of services. How will you know if a service is successful without asking the people it serves? For example, there may be services which appear to be successful but aren't really meeting the needs of the people. Instead of assuming what Autistic people need and want, ask them. That's the most effective way to begin.

Respondent 0148

a. Gaps and underrepresented research areas.
Services need to be more available to the broadest range of populations. As stated in answers to Questions 1-4 above, early screening and treatment approaches need to be more firmly established. Then, the critical personnel across all professional and paraprofessional occupations who are most in contact with families in every type of locale should be trained in these methods. The training models should be assessed for their effectiveness as measured by greater identification of and intervention with at risk infants and toddlers.

b. New opportunities.
Not enough opportunities presently as stated just above. However, more and more disciplines are aware and eager to better discern non-medical symptoms that threaten young children. Clinical pilot studies seem there for any funded competent investigator.

c. Research priorities.
Stated just above

Respondent 0149

a. Gaps and underrepresented research areas.
I didn't see anything mentioned here about the need for family support. My sister is a single mother (widow) raising a disabled child alone. How many families (statistically) of children with autism are single parents? Where do they turn for assistance such as respite care? What kind of respite care is available? (not much in her county in New Jersey, and what is available is a stay at a hotel with a stranger - not a great place to put a child who cannot communicate). What states, and what counties within that state offer special services? Has this ever been studied and compared?

b. New opportunities.
How about training people to deal more effectively with ASD? People like police, postal workers, EMT workers, nurses, doctors, dentists? Try finding an orthodontist willing to treat a child with ASD. We certainly haven't been able to find one. How about training ER doctors? One ER doctor told us not to worry about my nephew's cracked tooth because children with ASD don't feel pain the way "we" do. How crazy was that? Don't they teach doctors anything in medical school about ASD and how to treat patients who have ASD and who cannot effectively communicate? We had to train my nephew to "blow out the birthday candles" in order for the doctor to listen to his lungs. And I don't have a medical degree. Give me a break. The doctors, nurses, dentists, etc...are not being trained how to deal with ASD patients. I don't see that listed in Section V.

Respondent 0151

a. Gaps and underrepresented research areas.
The how to is not well published. How do I get my children registered for TEACH services? Why does it take so long? How do I get my children registered to receive CAP services? Why does it take so long (if ever)? How do you assist families to cope with the crushing blow that their child or children have ASD? How do you support families to deal with the ongoing daily struggles?

b. New opportunities.
Better funding for services such that all those in need have access and quickly. This should be considered for inclusion in the no child left behind program.

c. Research priorities.
Improve access to psychological services, provide a better consolidation of all the possible treatments, whether proven yet or not (so noted), hold insurance companies accountable for treatments that are proving effective (with input from the Doctor if necessary that it is effective and required).

Respondent 0153

a. Gaps and underrepresented research areas.
Better communicate the effects and experience of ultrasound in the womb, and its possible link to autism.

b. New opportunities.
Look to produce and promulgate information on a possible link between ultrasound events and ASD.

c. Research priorities.
More highly prioritize publicizing a possible link between ultrasound events and PDD.

Respondent 0157

a. Gaps and underrepresented research areas.
A national database of providers certified in treatment of autism would be helpful. A certification/accreditation program would be valuable. Providers and programs could then demonstrate that they have appropriate skills to assess, diagnosis, and treat pervasive developmental disorders.

Respondent 0161

a. Gaps and underrepresented research areas.
Don't research where to get services. Research how in the hell I'm supposed to PAY for these services. Services are useless if insurance companies aren't required to cover them.

Respondent 0168

a. Gaps and underrepresented research areas.
There needs to be a focus on how the service system can be simplified and coordinated in a more manageable way. So, for research purposes, get feedback from people who are living in different models now. For example, the state of NC seems to have a more "friendly" and accessible state-wide autism service model. Is this true and does this reduce the stress on families and provide more opportunities for people with autism? If so, there should be a model suggested for states to adapt.

b. New opportunities.
Help people find the resources on what works without each parent group having to recreate it over and over.

c. Research priorities.
The "State of the States" should be a living web-based resource accessible from the IACC website that can help people understand the service system and resources in their state and local areas.

Respondent 0173

c. Research priorities.
Where are the supports for those on the spectrum that are able to undertake post-secondary academic education?

Respondent 0176

a. Gaps and underrepresented research areas.
As the parent of a child with ASD, I state with profound sadness that few services actually exist for my son, and those that would truly help him, I cannot afford. Although my experience with Early Intervention was outstanding, receiving family-centered, home-based therapies 3X weekly, the services my son has received through the school system (which my son entered at age 3 when he was no longer eligible for Early Intervention due to the cut-off age for services in my state) have been far less than adequate. Moreover, I am convinced that the services my son receives at school are ONLY designed to help him be successful in the school setting, NOT designed to help him become successful as a functional, independent member of society. School does not appear to be designed or intended for therapeutic rehabilitation including functional communication skills of increasing sophistication. Tragically, and despite sustained effort to the contrary, I have watched his social skills decrease.

b. New opportunities.
Children with ASD have intense social-cognitive deficits that make the most seemingly benign social settings very complex even for (and perhaps especially for) children who can speak. Their invisible disability presents tremendous disadvantage when entering any social situation, and especially when entering situations that are new, unfamiliar, or very complex. Every movement from one area to another can be counted as a transition, even when the people are familiar (such as reading books in a classroom, then putting them away to play a game). Every transition requires a battery of complex, coordinated skills of varying difficulty for children with ASD. Structure and visual schedules help, but they have their limitations as a child ages. Research regarding decoding the complexities of social environments, whether a grocery store, a classroom, an airport, or a wedding, will uncover best-practices for helping children with ASD develop self-help skills to last a lifetime.

c. Research priorities.
First, research the difficulties experienced by children, youth and adults with ASD pertaining to social situations. Deeply understand the nature of how their brains interpret and categorize such situations. Know how and why transitions appear to be confusing and/or confrontational for them. Second, assist them in understanding and interpreting choices in a situation. Teach them to ask for help and/or how to understand and advocate for their needs. Develop and use best-practices for assisting them in decoding social situations without heavy reliance on visual schedules or prior exposure. Help them generalize a set of skills that uses decoding to gain independence and social success in all social settings. Arrange the context of this teaching and understanding to be inculcated daily to students with ASD. Third, offer parents the ongoing assistance of a professional who will come to the home and assist when the child is "stuck" and needs assistance to move forward.

Respondent 0181

a. Gaps and underrepresented research areas.
V. Where Can I Turn for Services? Again, we highly recommend consulting Educating Children with Autism, mentioned above, and strongly support the IACC's lifespan approach on evidence based practices. We also recommend using an abbreviated version of the Autism Speaks 100 Day Kit found in English/Spanish at http://www.autismspeaks.org/community/family_services/100_day_kit.php This link exits the Interagency Autism Coordinating Committee Web site. At 81 pages, we think this is too overwhelming for parents of newly diagnosed children.

Respondent 0184

a. Gaps and underrepresented research areas.
The assumption behind the IACC Subcommittee hearing in St. Charles, IL on July 23 seemed to be that services included only treatments that would specifically aid those on the autism spectrum. In my experience working with doctors, parents, and others dealing with ASD, I am struck by how much help parents need negotiating the confusing welter of regulations, authorities, and rules in order to try to get help. Thus, I think a desideratum of the first order is to have professional advocates (not necessarily attorneys), who have undergone training to know about how to access services for families affected with ASD. It is hard enough to manage the services when you know what you are doing. If you are suddenly "hit" with news of your child's affliction, you can be overwhelmed. It would be of great help if the IACC would support ombudsman or advocate training (education, medical, insurance, legal) to aid families when they have the daunting task of facing confusing systems.

Respondent 0187

a. Gaps and underrepresented research areas.
For nonverbal ASDs there are very few services available, other than generalized respite care and therapies which are tailored to higher functioning ASDs. Again, research on nonverbal ASDs is needed, to develop standardized testing to assess cognitive development and to adapt treatments and therapies to address the needs of this understudied group. Not meaning any disrespect, this question is in some sense 'irrelevant' because without any definitive research to measure and define the nonverbal ASD individual, services other than basic care are not specific enough to help the individual or their family and caregivers, therapists and doctors.

b. New opportunities.
Research and develop standardized testing to measure cognition in nonverbal autistics. Research and develop therapies that address the functioning and challenges of nonverbal autistics so that effective treatments and interventions and services can be provided. Please include more nonverbal subjects in your research. No research has been done on this group. This is a critical area that is missing from the autism research 'road map'.

c. Research priorities.
Prioritizing the research objective in section V: Include nonverbal autistics in research, as no one in this group is included at this time. Do research to find ways to measure cognition in nonverbal autistics. Do research to develop therapies that are needs-specific to nonverbal autistics. In this way real services and programs can be developed.

Respondent 0190

a. Gaps and underrepresented research areas.
Advancing research on models for state, regional and local interagency collaboration should be supported and valued as a means to further the efforts of improved coordination of services that support individuals with ASD and their families. We applaud the focus on State of the States, as we have much to learn from one another. The result of shared expertise and knowledge among and between agencies allows for a more comprehensive approach when assisting families who are navigating multiple systems that are the gate keepers for services, funding, knowledge, and access to the community. To this end, Ohio, has convened an Interagency Work Group on Autism comprised of reps from the Gov.'s office and multiple state agencies, to improve cross system communication, sharing of information, and work 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.

b. New opportunities.
Ohio is engaged in multiple efforts that support IACC's proposed research on State of the States. OCALI, in partnership with NATTAP through ASA, and NASDSE, initiated the national Community of Practice in ASD which provides opportunities for stakeholders of all system levels to contribute to national issues, bringing together a powerful and informed voice to affect policy and programs.--- Sponsored in part by NASDSE, NATTAP, ASA, and the National Professional Development Center for ASD, OCALI will host the 3rd annual State Team Forum in conjunction with their national conference. This forum brings together state-level, cross-agency representatives to conduct an individual and collective state review of current policy, services and supports. This informal assessment surfaces common issues that guides the work of the state teams.--- Ohio is poised to continue leading this high-quality, evidence based, and cost effective annual state of the state review through this ongoing work

Respondent 0194

a. Gaps and underrepresented research areas.
It is crucial to identify barriers to the adoption and implementation of evidence based services at the community-level, and potential ways to address them. For example, exploring disparities in access and utilization of services by inner city minorities will help us understand how local differences translate into the quality of care received and the outcomes for children, adults, and their families affected by autism. Just as we can learn from health disparities in minority or underserved populations in the US, similar benefits can be gleaned from international development efforts. In addition to exploring how differences in capacity and health systems impact practice and outcome, the inclusion of cultural factors can inform how best to help similar minority and underserved groups in the United States.

b. New opportunities.
Multi-site clinical and research networks with access to large samples of well-characterized patients with ASD will allow rigorous comparison of the effectiveness of different treatment strategies. These networks can also serve as platforms for dissemination of scientific insight, practice guidelines, and empirically-derived treatment strategies (i.e. clinical trials, etc.). It is important for the NIH to invest in infrastructure to leverage the existing networks for comparative effectiveness studies and dissemination of best practices resulting from these efforts. Most of the autism clinical and research networks mentioned above involve academic hospitals or medical centers. While they play an important role in research and knowledge dissemination, they are unlikely to meet all the service-related needs of the community. For instance, rural communities require more local expertise and access. Research is needed to develop community-based, cost-effective solutions.

c. Research priorities.
Outcomes of transition services for young adults with ASD are very poor and under-researched. Howe et al (2004) surveyed 68 adults with autism with IQ greater than 50, and found that the majority had outcomes that were rated as poor or very poor. Research is needed to better understand which transition services lead to the best outcomes.

Respondent 0199

a. Gaps and underrepresented research areas.
There are very few programs for nonspeaking autistics in our community.

b. New opportunities.
Proper placement in adult programs after age 21 and the school is no longer providing services

Respondent 0200

a. Gaps and underrepresented research areas.
Speech therapy does not work. We tried and so did the therapist and so did my grandson. We need more.

Respondent 0202

a. Gaps and underrepresented research areas.
THERE ARE NO SERVICES TO HELP MY SON IN KY, he has dyspraxia (no one has a clue what to do)

Respondent 0210

a. Gaps and underrepresented research areas.
Research is needed as to how to perform effective transition planning (along with the research as to the services required post-secondary education).

c. Research priorities.
There is a crisis in terms of adults on the spectrum who are not receiving services. We need research on the kinds of services adults need and their effectiveness in enabling them to reach independence. A specific research project as relates to adults should be funded. State by State assessment MUST include adult services.

Respondent 0213

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now.

b. New opportunities.
This population is increasing in size and there have been advances in available technologies to implement.

c. Research priorities.
Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research

Respondent 0222

a. Gaps and underrepresented research areas.
Information about services is almost non existent in rural areas.

b. New opportunities.
More research into how to provide services across the board in both urban and rural areas. And provide services to all individuals equally.

Respondent 0224

a. Gaps and underrepresented research areas.
There aren't enough research projects requesting low-functioning participants. My son has been denied participation in every trial I have tried to get him in because of this. How can you say you're researching autism, when you exclude 20% of autistics? The nonverbal don't need interventions, medicine, and hope? They need more help than anyone, yet there is nothing for them.

b. New opportunities.
Develop projects designed to teach the nonverbal leisure skills.

c. Research priorities.
Boredom is the leading cause of why nonverbal children are lost and hurt. They have no way to entertain themselves. Saving lives should be a priority.

Respondent 0235

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating autistic people have few places to turn for all types of services. Especially if they are older than 12 yrs or GASP 18!

b. New opportunities.
What services would help teenagers and young adults who are nonverbal and low-communicating?

c. Research priorities.
What is available for Adult services for nonverbal and low-communicating?

Respondent 0236

a. Gaps and underrepresented research areas.
This is a huge area of need!! we have inadequate services beginning with diagnosis. All early intervention should include a family approach, supporting the family, teaching families how to work with their children, this would aid in acceptance. Until our families are supported properly they will continue to be vulnerable to the quacks who are earning thousands and thousands off of our families! It is very difficult to accept that your child is autistic for life if you are not getting the support and services you need!

b. New opportunities.
We need a demographic study... who is providing the best services, where, etc. models of best practices. a lifespan approach!

c. Research priorities.
At this point the least amount of research happening is for the adult population. start with adults and work backwards! Once you have a service delivery model that provides good adult services you are bound to also be meeting the needs of children!

Respondent 0240

a. Gaps and underrepresented research areas.
What happens after high school. We need more programs to help socialize adults.

Respondent 0244

a. Gaps and underrepresented research areas.
No additional comments...

b. New opportunities.
Identify an autism coordinator from each area or State that can navigate insurance payers and identify services that are available to the recipient with ASD. Attach a link to each state for this purpose...if possible.

c. Research priorities.
No additional comments...

Respondent 0246

a. Gaps and underrepresented research areas.
individuals, privately paid, as parents are able to find them and pay for them is the current mode of practice schools do not address these schools largely do not know how to handle kids with autism, and abuse them!

b. New opportunities.
Have clinics set up, with standards of care Paid for by insurance, or with government assistance, so all can be treated

c. Research priorities.
Early treatment produce best results If not treated, there is a tsunami of autism hitting our country, with no slowdown in sight... which will bankrupt all services, all of society

Respondent 0251

a. Gaps and underrepresented research areas.
there is no central information source.

b. New opportunities.
expanded awareness

c. Research priorities.
finding an impartial source of information

Respondent 0259

a. Gaps and underrepresented research areas.
We need to get psychiatrists who understand medicating the Autistic child on board with insurance companies. I called every psychiatrist in a 45 mile radius on our insurance plan and none knew how to medicate for self-injurious behaviors. Pretty sad. Parents must have better access to those who do know how to help our kids.

Respondent 0262

c. Research priorities.
These are all noble goals; I hope some success can be achieved in provision of state services in time to help my child.

Respondent 0268

a. Gaps and underrepresented research areas.
I would turn to those who have experienced what I have talked about on some level. People like myself who experienced and continually questioned the phenomena along with some individuals with Asperger's syndrome who may be able to give needed input. I would also engage scientists with some understanding of quantum mechanics who have understanding of nonlinear thought, the subconscious and universal field of thought.

b. New opportunities.
Right now there aren't any services that adequately address the needs of these individuals. Until we evolve our current thinking, strategies to meet the needs of these unique souls will remain rudimentary.

c. Research priorities.
CALL ME: [redacted personally identifying information] I WILL SHOW YOU SOME VIDEOS! I WILL ANSWER YOUR QUESTIONS! I WILL DO WHATEVER I CAN TO ASSIST!

Respondent 0269

c. Research priorities.
We live in PA and there is no quality respite available.

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who do are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0276

a. Gaps and underrepresented research areas.
Again, much more research is needed about individuals with limited or no language skills and those with more challenging behaviors.

Respondent 0279

a. Gaps and underrepresented research areas.
Please start including nonverbal and low-communicating people in research NOW! This represents about 50% of the autism community. My daughter is "High functioning" because she speaks. However, she does not COMMUNICATE beyond the rote questions and answers she has been taught. Once they get past that she reverts to either repeating the same questions or says "I like this day" or "How are you doing?". She cannot build relationships, get good health care, shop appropriately, etc, etc, etc. Research into what really works for these individuals, and then funding to get the appropriate care out to them is needed NOW.

b. New opportunities.
There is a very large population of young adults who were before the current educational advances and are struggling. They are too old for the programs which are helpful to the younger generation, but they can learn if we could get appropriate programs set up for them. The funding to pay for the programs is available to many of us through Home Based Medicaid Waiver So - please extend communication/speech research into the adult world to see if we can't save this group that is floundering. In the long run money should be saved if we could get these adults able to function in the working world and become contributing members of society. Thank you.

Respondent 0281

a. Gaps and underrepresented research areas.
It is important for parents and professional to know that there are many therapies that can help individuals that are nonverbal. Communication is foundational. If someone has no way to communicate then access to opportunities are extremely limited. It is important that methods that provide access to technology and AAC devices like Facilitated Communication be made available to everyone. It is very important that people who are nonverbal have the opportunity to try all kinds of technology and AAC devices. However, there is so much focus on becoming verbal that kids who are nonverbal are left behind...they then resort to behaviors to get their needs met. Technology training and AAC is vital and more professionals and parents need training.

b. New opportunities.
Looking at therapies like Facilitated Communication, Masgutova Method, Neurologic Music Therapy, The HANDLE approach, Feldenkrais, craniosacral therapy. Parents need to know that these therapies are available and can impact the success and access to communication for their nonverbal children.

c. Research priorities.
Because Communication is the foundation for all other things. A priority needs to be in developing alternative communication access for kids who are nonverbal. While being verbal is a goal....one should not remain silent while these skills are being developed. Parents of nonverbal kids often feel that there is little to no hope for their children because such an emphasis is placed on being verbal. We need change the emphasis to the development of communication skills in general...no matter its form. No child should arrive at age 3 or 4 without an AAC device if needed. Waiting, hoping and wanting speech is all fine and good...but communication is more important that verbal speech...it allows access to full inclusion in education.

Respondent 0294

a. Gaps and underrepresented research areas.
The NIMH should start working on this NOW.

b. New opportunities.
Contact the families of autistic who are submitting responses to this questionnaire/ submission form. They'll have plenty to say.

c. Research priorities.
Put this need into this year's research priorities.

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0298

a. Gaps and underrepresented research areas.
Adult services will be needed for low-functioning nonverbal children as they reach adulthood.

Respondent 0306

a. Gaps and underrepresented research areas.
You need to spread far and wide that DAN doc's are making great headway in helping these kids. Also need insurance companies required to pay for treatment, and facilities around the country offering ABA.

Respondent 0307

a. Gaps and underrepresented research areas.
Services? What services? The only diagnosis that health insurance companies can deny services for is autism. They have to provide coverage for cancer, heart disease, schizophrenia as well as almost every psychiatric condition under the sun. But my husband's health policy clearly stated in "conditions not covered" section that they do not cover any treatment related to a diagnosis of autism. HOW CAN THAT BE ALLOWED TO HAPPEN. And don't tell me that it is the responsibility of the schools - my child has a medical diagnosis (which you think is a psychiatric disorder) and the school is not able to treat my child. Should we have children with cancer or bipolar or schizophrenia be treated at schools?

c. Research priorities.
Prove that ABA and other biomedical treatments work and require ALL insurance companies to pay for services related to autism. The surgeon general has already come out with a statement that ABA is an effective treatment in autistic individuals. Can't be that hard to do.

Respondent 0309

a. Gaps and underrepresented research areas.
WHY ARE SHORT TERM OBJECTIVES over 3-5 years??? We need services now! Our children are diagnosed NOW!

b. New opportunities.
School districts need to look into better models. There are too many children on the Autism Spectrum to continue to use the same methods!

c. Research priorities.
BEHAVIOR, BEHAVIOR, BEHAVIOR!!!!!!!

Respondent 0312

a. Gaps and underrepresented research areas.
Where is Autism Speaks?

b. New opportunities.
Where are experts in medical problems- Why are there SO many psychiatrists? Why this ancient worldview as autism as a form of mental illness, rather than the complex disease it truly is. How to get help for kids w/ compromised immune problems and severe allergies

c. Research priorities.
IACC really needs input from the autism community here, not only Tom Insel's colleagues, but organizations that represent thousands of families who answer these questions every day. Include DAN!, NAA, TACA, Autism Speaks

Respondent 0318

a. Gaps and underrepresented research areas.
In your research opportunities (bullet point 3) it states you are looking for cost effectiveness studies of interventions and services for people with ASD across the lifespan. I propose researching RDI as the average cost of a year of RDI cost approximately 6,500.00- 8,000.00 per year.

b. New opportunities.
In response to this statement: "Research can also define the cost-effectiveness of evidence based practices and thereby provide the data needed by various payers and policymakers." I would like to comment that RDI is not only cost effective but also evidence based. RDI is based on developmental research.

c. Research priorities.
Prioritize bullet point number 1 under long term objectives. Test both the efficacy and cost effectiveness of the RDI program within this study.

Respondent 0321

a. Gaps and underrepresented research areas.
Urgent review of present Vaccine Court policies and procedures to regain the "spirit" in which the Vaccine Court was first created...which was to make compensation for a vaccine injured child...quickly and fairly...certainly not the "adversarial" court that exists today...where USD Dept of Justice lawyers and all the powerful influence and resources they have...are opposed by families whose finances are, in the vast majority of cases...destroyed caring for their vaccine injured child.

Respondent 0322

a. Gaps and underrepresented research areas.
SINCE THE DAMAGE IS THE RESULT OF FEDERALLY APPROVED VACCINES, FULL FEDERAL FUNDING OF STATE PROGRAMS, INCLUDING SCHOOL DISTRICT SPECIAL EDUCATION FUNDING FOR SPECIAL AUTISM EDUCATION PROGRAMS, SHOULD BE REQUIRED.

b. New opportunities.
SINCE THE DAMAGE IS THE RESULT OF FEDERALLY APPROVED VACCINES, FULL FEDERAL FUNDING OF STATE PROGRAMS, INCLUDING SCHOOL DISTRICT SPECIAL EDUCATION FUNDING FOR SPECIAL AUTISM EDUCATION PROGRAMS, SHOULD BE REQUIRED.

c. Research priorities.
SINCE THE DAMAGE IS THE RESULT OF FEDERALLY APPROVED VACCINES, FULL FEDERAL FUNDING OF STATE PROGRAMS, INCLUDING SCHOOL DISTRICT SPECIAL EDUCATION FUNDING FOR SPECIAL AUTISM EDUCATION PROGRAMS, SHOULD BE REQUIRED.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0333

a. Gaps and underrepresented research areas.
You tell me. Seriously, I need to know.

Respondent 0337

a. Gaps and underrepresented research areas.
- Why do some parents prefer to ignore their children's ASD diagnosis by not looking for any therapy? - How can current cognitive therapies be implemented throughout school districts in a way that makes economic sense to them? - What are the outcomes of therapies that include the parents compared to those that require very little of their involvement? - What's the effectiveness of providing psychological support to parents of ASDs?

Respondent 0340

a. Gaps and underrepresented research areas.
The financial impact of autism on the family is underrepresented.

b. New opportunities.
We should perform a study on the financial impact on families and how it could be alleviated.

c. Research priorities.
The long-term objective for "four evidence based services" should be replaced with "those services most highly endorsed by parents and caregivers."

Respondent 0345

a. Gaps and underrepresented research areas.
- We parents need more services for our children - respite care and adult services! - money is needed for job training and adult housing (safe).

Respondent 0347

a. Gaps and underrepresented research areas.
Don't even get me started on this topic. There are so few people and groups who want to work with the nonverbal autistic it isn't even funny. Many organizations and schools will work with special needs individuals, but as soon as you tell them that your child is nonverbal...you are dropped from consideration. Do not forget the nonverbal. Find services who no only want to work with autistic individuals but the nonverbal ones too.

Respondent 0353

a. Gaps and underrepresented research areas.
Physicians who medically treat autism, allowing children to make the most use of their educational and other therapies and have the most chance of social and communication improvements and eventual gainful employment.

Respondent 0356

a. Gaps and underrepresented research areas.
Developing solid information for families so we can compare one area to another. We live in a mobile society. It is a real conundrum for families if they are offered an opportunity in another state. There is no document to compare the services. Being able to analyze what services are where could help develop better services.

Respondent 0360

a. Gaps and underrepresented research areas.
Certainly not to the FDA, CDC or AARP! Only those brave doctors who are following the DAN treatment protocol and RECOVERING children are truly serving families living with autism

b. New opportunities.
Listen to the DAN doctors. Follow their lead and see that autism truly is treatable.

c. Research priorities.
FUND the vaccine research that was originally voted for!

Respondent 0363

a. Gaps and underrepresented research areas.
We should be able to turn to our insurance companies! In every state. This committee should be pushing for health coverage for all affected with Autism. Research how many families are bankrupt and unable to access the proven help that all children need and deserve.

Respondent 0364

a. Gaps and underrepresented research areas.
Biomedical services that offered now should receive much more representation.

Respondent 0366

a. Gaps and underrepresented research areas.
Parents should first turn to the AAP to provide standards that include testing for food allergies and intolerances, candida, clostridia, vitamin deficiencies, mineral deficiancies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

b. New opportunities.
Parents should first turn to the AAP to provide standards that include testing for food allergies and intolerances, candida, clostridia, vitamin deficiencies, mineral deficiancies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

c. Research priorities.
Parents should first turn to the AAP to provide standards that include testing for food allergies and intolerances, candida, clostridia, vitamin deficiencies, mineral deficiencies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

Respondent 0368

a. Gaps and underrepresented research areas.
Often the problem here is not finding services or treatments, but paying for them. We have spent hundreds of thousands of dollars out of our own pockets on our son. None of the treatments we have tried have been covered by insurance. .

c. Research priorities.
However, it might be useful to research what kinds of services are available in different parts of the country -- and how much they cost. It would be useful to research possible ways to pay for services for autistic children and adults. It would be useful to research how long the waiting lists are and develop ways to reduce waiting time.

Respondent 0374

a. Gaps and underrepresented research areas.
I request that the IACC continue to highlight the crucial need for more research into services (as noted in Section V) and into how we can enable individuals on the autism spectrum to be educated in and to live in the community (as noted in Section VI).

Respondent 0375

a. Gaps and underrepresented research areas.
We need more research for Autism because the sooner you get to these Children they will get the help they need. I know this because my son was able to learn words 6,000 words at age 25 on a Lightwriter and understood what they meant. He is a different Person since he's been able to communicate. He needed research and programs that believed he was capable of being more than 2 year old. Just because they can't talk also doesn't mean they are incapable of feeling like every other person in the United States do. Parents are not educators But autism throws them into this title. We need help! My son has learned something new every day since he's gotten Lightwriter so why can't researchers help people that don't have a voice. Children as well as adults can learn if given the chance.

b. New opportunities.
The need for better understanding how to train children with no speech that actually works would be a big help to advance any person with autism at any age. What will work? There are so limited services for autism in our area that mostly it has been my job. In my mind I've got Jim pretty far on my own so It would be so nice to have help to bring my son so much farther than he's already come.

c. Research priorities.
They need to believe that this can help a nonverbal person. If you do nothing Now what will be the alternative down the road? With so many new cases being brought into this world, now is the time to do research so there won't be near as many nonverbal adults left to fend for their selves. That terrifies me. Not only for my son but for every person who is nonverbal out there. Oh I also believe we could use more parent input into what they think that can work. I want to go on and be one of the ones that can say I helped my son live the best life he could and work with people like him.

Respondent 0376

a. Gaps and underrepresented research areas.
Well, don't turn to Autism Speaks for any help, they suck the money out of communities.

Respondent 0379

a. Gaps and underrepresented research areas.
The vaccinated/unvaccinated study.

b. New opportunities.
The vaccinated/unvaccinated study.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0385

a. Gaps and underrepresented research areas.
Agencies need to work together. There is no 'one size fits all treatment' for kids. Some ABA aspects may be necessary to help a child succeed in a classroom environment, but there are quality of life aspects of RDI or DIR that are more important. Parents hope they pick the best treatment option for their child and then have to switch if it's not the right fit. Agencies need to meet the child and help determine the best approach or perhaps a multitude of approaches. Additionally, the minimum state requirements for senior and line therapists are woefully inadequate. They often do not require them to work specifically with kids and speaking from first hand experience, I have had Senior therapists in my home at $50 per hour whose knowledge of ASD was not even close to that of myself or wife. It's a disservice to the families. Fortunately, there are also many excellent therapists out there. Just not enough of them.

b. New opportunities.
More funding needs to be put towards Relationship Development Intervention (RDI) as a treatment option. Especially for individuals with so-called 'high functioning ASD' though that is a misnomer as often kids with good verbal skills are labeled high-functioning, though they can have many challenges well beyond the ability to talk.

Respondent 0388

a. Gaps and underrepresented research areas.
Better coordination of services and informing parents of the available services and how to obtain them. Care Coordination!

Respondent 0392

a. Gaps and underrepresented research areas.
As a divorced and thus single parent of a nonverbal or lower functioning autistic daughter, my son's and my life has revolved around taking care of her and ensuring she is cared for, a daunting task without outside assistance. She is 15 now and there are no after-school care programs for her. I have been forced to work part-time for several years in order to care for her after school. The Medicaid waiver is not useful in that I have had to locate helpers myself. They aren't always reliable nor know about the complexity involved in helping an autistic individuals. Often they simply expect to just sit and have little interaction with my child. Programs for the less communicative and nonverbal or truly autistic need to be funded and available. My daughter has a right to be part of the community and be amongst other children/young adults, not isolated in the home a lot or kept by me, her 54-yr old mom who, by the way, has no savings or retirement now!

b. New opportunities.
Recreational and or day care programs for special needs children would be useful regionally. The Medicaid waiver providers are not responsive to the needs of the child or the parent in my experiences with them in Louisiana, Arkansas or West Virginia. It took me 2 yrs to get the Medicaid waiver approved even. I feel that an autistic nonverbal child such as my daughter of 15 would be better served in a small structured environment at day care type centers or programs in communities. You see elderly adult day care centers, drug abuse recovery centers, Alzheimer's centers, why not Autism centers since it is supposedly much more prevalent today and many would benefit. Most areas have very little services available period. You are really at a loss if you don't live in a semi-urban area.

c. Research priorities.
Training of caregivers or providers of services to autistic individuals who are considered Lower functioning on the autism spectrum, such as my daughter, should be addressed. According to the Autism Society of America, most individuals with autism DO function at a lower level, or have lower IQs and the higher functioning autistic individuals such as those with Aspberger's are not as common, yet seemingly there are more programs and services available to the more communicative autistic individuals. As an enlightened society, we need to really address the needs and best interests for those who cannot communicate their needs. Government programs should be funded for helping these individuals.

Respondent 0396

a. Gaps and underrepresented research areas.
Right now family have very few places to turn. Practitioners who work with children often do not feel competent to serve this population. There is little within the big agencies other than ABA. Family have no where to turn if they wish to have a choice of approaches.

b. New opportunities.
Education of the therapeutic community about the variety of approaches that exist. Pediatricians need help as they are often gatekeepers. They cannot make this diagnosis in a 15 minute visit. Developmental psychologists are under-educated in the area of ASD and under utilized for treatment planning.

c. Research priorities.
Less emphasis on top-down, skill-based, and compliance-based approaches to autism. Helping families to establish good emotional ties to their developmentally- fragile youngsters.

Respondent 0403

a. Gaps and underrepresented research areas.
None

b. New opportunities.
Look into highly trained professional.

c. Research priorities.
None

Respondent 0408

a. Gaps and underrepresented research areas.
There are not enough doctors capable of diagnosing ASD. There are not enough therapists doing OT, Speech, and ABA. There are not enough bio-med docs (doctors, not chiropractors). Researching where to turn for services is a joke! I was told there would be 6 MONTH waiting list to have my daughter diagnosed. I was told I could have 3 hours of ABA a week (out of pocket, not covered by insurance) when the recommended amount is 20-40 hours. I was told the waiting list to see a biomed doc was 2 YEARS... I KNEW where to turn for services, they just were too busy for us. ASD is inundating our systems. Spend your money fixing the ASD, not the system.

Respondent 0409

a. Gaps and underrepresented research areas.
Research needs to assist Speech Therapist in identifying options for the nonverbal and low-communicating individuals. SLPs in the school districts claim, "I can't help him, he can't talk!" Are you kidding me? He needs to communicate. Who takes responsibility for these individuals to communicate?!

b. New opportunities.
There needs to be research utilizing new computer technology. Touch screens, keyboards, mouse, and especially software could make a huge difference in the nonverbal individual.

c. Research priorities.
Speech and Language Therapies.

Respondent 0411

a. Gaps and underrepresented research areas.
There is much corruption with ASDs. Please read http://www.valleysnafu.com/eibt.htm. (IACC Note: URL is not valid.) You will see many documents that will explain some of the corruption that is occurring. School districts and regional centers routinely lie to parents...especially if their children with ASD are lower-functioning. School districts have deep pockets to pay for attorneys with our tax money and parents do not have the financial resources to fight. Consequently, children are being warehoused in special-day classrooms doomed to a future of dependence on the system.

Respondent 0420

a. Gaps and underrepresented research areas.
Mother's put their pediatricians on a pedestal and worship them like god. This is sad because pediatricians admit that they do not know anything about autism. I'm constantly shocked and reminded of how I was treated when I pleaded for help because my child quit talking and quit advancing like he was. They actually ignore it all and don't want to break the bad news. Often, mothers have to find out when they send the kids to preschool.

Respondent 0422

a. Gaps and underrepresented research areas.
My daughter was born in 1990 at the beginning of the expansion of autism diagnoses. Every place I went to for help, she was the first autistic person they had seen. We started early, when she was three, but there was no effective help and still hasn't been to this day. She is now 19. I believe she could have learned and been integrated into regular classes, she is bright enough. But it does take time and patience. The school systems did not have a clue. I don't blame them. They have enormous financial and administrative issues. I taught her a lot, but I had to work. She is happy and adjusted at home, but is essentially nonverbal. Where do I go?

b. New opportunities.
Language development research. Visual learning. Computer learning techniques for language development.

Respondent 0427

a. Gaps and underrepresented research areas.
Where can I turn for services, where ever I can afford services....? My parents pay for ABA from their retirement. Our kids are injected with shots, but so many kids are rejected because there families can't afford services or help. Autism comes with a big price tag.

Respondent 0430

a. Gaps and underrepresented research areas.
The topics misrepresented are the very real medical problems associated with autism. Is autism a neurological condition or a medical condition with neurological manifestations? Until you really answer this question you are spinning your wheels.

b. New opportunities.
Treatment research should focus on behavioral and biomedical interventions actually in use throughout the community.

c. Research priorities.
Study the treatments already being used in the autism community. Objective unbiased fearless research is a must. You must not be afraid of what you are going to find or leave any stone unturned. 1:100 children in not acceptable. It is within the power of this committee to save the next generation of children. It also seems that you have the power to throw them under the bus. Which will it be?

Respondent 0432

a. Gaps and underrepresented research areas.
We don't need research on this we need to actually fund treatments. Right now private insurance companies are allowed to specifically exclude research based behavioral interventions and no federally funded research is being done on biomedical interventions that are actually helping kids. Therefore, insurance companies are not covering those either.

Respondent 0437

a. Gaps and underrepresented research areas.
Connections Center/RDI Parent Education Program is the most powerful parent education tool I have found for my families.

b. New opportunities.
Connections Center/RDI Parent Education Program is the most powerful parent education tool I have found for my families.

c. Research priorities.
Dynamic Parent Education designed to educate parents about the core deficits of autism and how to remediate them at home. See Connections Center, RDI.

Respondent 0440

a. Gaps and underrepresented research areas.
Do autistic individuals receive adequate care and treatment from the medical profession for non-AS related concerns? What can be done to improve this? What can we do to improve recognition and handling of autistic individuals by police and other public safety officials? Does the information available to parents promote a mindset that is healthy for them and for their child? How about the information available to the public? What can we do to address the needs of autistics and their families without promoting an attitude of disproportionate negativity or increasing stigma?

c. Research priorities.
This section is massively under-prioritized. It is, quite frankly, shameful that so much time and energy is devoted into identify what interventions can help and yet so little into ensuring that people have access to these interventions and services. All the knowledge in the world addressing what services work is of little use if services aren't available or no one knows where to find them. This section should be of high, if not highest priority to the IACC, not the lowest.

Respondent 0445

a. Gaps and underrepresented research areas.
help parents find resources to help them open more government money

Respondent 0454

a. Gaps and underrepresented research areas.
Adult services (supported employment, housing, continuing education and rehabilitative services are nonexistent in many areas). Insurance coverage is very inadequate (they routinely deny autism treatment and therapies).

c. Research priorities.
Mandating insurance coverage for autism treatment and therapies. researching and publishing a blue print for best practices in services for adults with autism.

Respondent 0455

a. Gaps and underrepresented research areas.
There needs to be more guidance from the NIH and the American Society of Pediatrics.

Respondent 0459

a. Gaps and underrepresented research areas.
I think that services such as accommodations in the workplaces and schools should be funded. There should also be less funding of abusive programs such as ABA and PBS. Both have not been scientifically proven to be helpful. In fact, some would say that they are abusive.

b. New opportunities.
I think that autistic adults and children should be invited to talk about their experiences with ABA and PBS and the effect it has had on them. Research should also be done on accommodations given and asked for in the workplace and school and then have measures implemented so that they will be easier to obtain.

c. Research priorities.
This should be a very high priority because these measures could affect the futures of thousands of autistic people positively and has the potential to increase productivity in the workplace.

Respondent 0461

a. Gaps and underrepresented research areas.
DAN Doctors,

c. Research priorities.
finding places for group homes, jobs for the soon to be adult population. Also continuing education beyond 21 for those in the population who can learn.

Respondent 0472

a. Gaps and underrepresented research areas.
Again, the IACC has chosen to ignore adult issues--when adult services is quite arguable the area which needs the most improvement. Almost nothing other than institutional living and Social Security disability checks is available for autistic adults. We need services which examine how we might better gain and retain employment, quality housing, and other services which we might need to improve the quality of our lives. There is a need for these services right now. Almost all autistic people will, G-d willing, spend the majority of our lives as adults. The IACC needs to pay according attention to this portion of the lifespan.

b. New opportunities.
Again, when considering "early intervention services," we need to ask what constitutes a successful outcome. An autistic child who can "pass" for normal is not necessarily a success story. In fact, that child may be unhappy because he or she is forced to constantly behave as though he/she is not autistic. We should recalibrate our measuring sticks to value happiness and quality of life, as perceived by autistic people, as the true measure of the efficacy of autism services.

c. Research priorities.
Research which focuses on services that can allow people to live in community, non-segregated settings is vital. Institutional settings are extremely detrimental to autistic people, and we as a society need to make sure that fewer people (including autistic people) are living in them.

Respondent 0473

a. Gaps and underrepresented research areas.
Develop an autism-treatment network similar to that used for childhood cancers (where 97% of children are participating in a clinical trial and all receive similar standards of care) Develop treatment plan based on empiric data derived from large-scale treatment trials and systematic analyses of recovered cases and those with optimal outcome. The plan would be individualized based on demonstrated predictors of response to individual therapies (particularly biomedical treatments directed towards core symptoms).

Respondent 0474

b. New opportunities.
There is a continuing need for the development and dissemination of comprehensive curricula for teaching individuals diagnosed with autism. We suggest that the IACC promote research on the evaluation of teaching procedures and the production of a comprehensive curriculum of teaching procedures for individuals diagnosed with autism. We also suggest that the IACC promote examinations of methods of training caregivers to implement effective teaching procedures with individuals diagnosed with autism.

Respondent 0476

a. Gaps and underrepresented research areas.
Services, to date, are usually based on misunderstood behavior, capabilities, and needs. Society and many businesses can benefit from, and pay well, highly specialized employees, with a drive to systematically produce accurate product, that fits well in its application. People living on the autism spectrum can often behave near normally and perform very well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately. Consequently, per the Life Needs hierarchy, we need to promote better understanding and performance of the positive aspects of autism, whereupon the drain of secondary problems will fade. An un-frustrated, un-apprehensive, and vigorous person with rare skills can cope considerably better with life. This translates into significantly less services and external resources required, and the person will likely have their own resources to pay for what they need, fostering a more independent life.

b. New opportunities.
An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills can usually cope considerably better with life than a person forced to emulate what he is not. Develop appropriate education requirements for highly specialized people. This means if they are able to advance themselves requiring them to go through what they don't need is wasteful. This also means, what they can't use, don't try to force them to use it. An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills, can usually be able to care for themselves and contribute to our economy.

c. Research priorities.
M... can learn a great deal from the communicative adults who have been trying to inform them of their error for a minimum of 40 years. An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills, can usually cope considerably better with life than a person forced to emulate what he is not. Referring to the hierarchy of Life Needs, (Refer to the works of Abraham Maslow) specifically fitted to autistic life, we find that training social skills is secondary to a positive Esteem-of-Self-and-Capability. i.e. A spartanly-brief statement, if you do not believe that yourself is useful-needed-wanted, there is little point trying to be or do what you can't. You turn defensively inward. Following the very name of autism. Conversely, if you know you are useful-needed-wanted, there is plenty of awareness and willingness to behave more normally.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
Florida Medicaid, within The Agency for Health Care Administration, oversees services provided to approximately 2,965 children 5 years of age and under diagnosed with either Down Syndrome or ASD. Of the children served, 1,438 are diagnosed with ASD only, while 1,527 are diagnosed with Down Syndrome (Medicaid claims data SFY 2006-2007). Medicaid pays about $20 million per year for Medicaid state plan occupational, physical and speech therapies for 8,073 children 20 years of age and under diagnosed with ASD and/or Down Syndrome. Medicaid's Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program is a comprehensive and preventive child health service that implements sections 1902(a)(43) , 1905(a)(4)(B) and 1905(r) of the Social Security Act.

b. New opportunities.
EPSDT in Florida is known as the Child Health Check-Up (CHCUP) program. Medicaid reimburses for Child Health Check-Ups for eligible Medicaid recipients under age 21 and children from age 1 through 4 who are enrolled in the MediKids program. The EPSDT benefit includes screening services, as well as diagnostic and treatment services. Screening services are required in four areas: medical, vision, dental, and hearing. Other EPSDT services include vision services, including diagnosis, treatment, and eyeglasses; dental services, including relief of pain and infections, restoration of teeth, and maintenance of dental health; and hearing services, including diagnosis, treatment, and hearing aids. While the EPSDT benefit is important to all children, it has been especially beneficial to the children with disabilities enrolled in Medicaid. For these children, Medicaid, through EPSDT, provides more comprehensive coverage than the typical commercial insurance plan and increases access to ne

c. Research priorities.
As part of Senate Bill 2654, the 2008 Florida legislature also passed law which requires health insurance plans to cover the autism spectrum disorder and protects those with autism from denial of insurance coverage. The bill contains authority to seek provisions for establishment of a compact with all insurers, HMOs and self insurers to provide therapy services to patients with autism spectrum disorders. Should the insurers not agree and comply with the compact then an insurance mandate will become effective. The bill also allows $36,000 per year and a lifetime cap of $200,000 in insurance coverage for habilitative therapies for children identified as autistic by age eight.

Respondent 0481

a. Gaps and underrepresented research areas.
More research is needed on how community services and supports can help Autistics to obtain employment, including studies of how to educate employers on inclusion of people with disabilities in the workplace and how to assist employers in developing effective programs. Too often, Autistic people end up unemployed not because of inability to work, but because of prejudice and ignorance on the part of employers, as well as lack of transportation and other problems that could be remedied by better community supports and services. These issues would be most effectively studied together, instead of looking at them in isolation.

b. New opportunities.
I am pleased to see that the IACC is supporting the use of a participatory action model whereby Autistic citizens can work with their families and communities as partners in research that can in turn inform policy. This will go a long way toward addressing the concerns and meeting the needs of the Autistic population. Those who are most affected by research in a particular area should always be empowered to have meaningful input with regard to it.

c. Research priorities.
Cost-effectiveness studies of community-based services and supports should consider not just how to reduce the cost of services, but also the benefits to both individuals and society when Autistic people are empowered to engage in productive work and to contribute as taxpayers. Research such as the Ganz study that claims to state the cost of the existence of a minority population is unethical and offensive. As Tyler Cowen pointed out in his recent book, there would never be a study purporting to calculate the cost to society of each member of a racial minority group. Autistics deserve the same respect.

Respondent 0484

a. Gaps and underrepresented research areas.
Very few agencies have services to meet the needs of individuals with Autism. Person Centered Planning Clinics is a good start, as well as positive behavior support clinics and community resources that understand Autism. Currently there aren't any and until we create positive and welcoming environments people with autism will not be led to come out of the shadows for services.

c. Research priorities.
Volunteer, self-help non-profit organizations that help individuals of all ages with autism spectrum disorders must be nurtured and developed. Self-advocacy skills, organizational and leadership skills are particularly difficult for individuals with autism spectrum disorders to develop because of the complex learning and social disabilities that usually characterize the population. However, this effort is absolutely critical since these skills are essential for lifelong success. Voluntary community supports are foundational for democracies throughout the world. Scientific studies of human polity have discovered that the nonprofit sector must be an equal counter balancer to the power of government and business in order for a particular human society to be a healthy democracy.

Respondent 0485

a. Gaps and underrepresented research areas.
Go to Age of Autism and read and hear from other parents when the services are absent in the autism communities. Its the only way that some parents get the help they need when everything else fails

Respondent 0488

a. Gaps and underrepresented research areas.
Funding streams are missing. Some classrooms have staff paid by many different agencies, which really affects the ability to work as a team. I'd love to see research looking at how this affects service provision. Also, there is a tremendous turnover of staff due to emotional exhaustion. This contributes to unavailability of services. Consider studying what contributes to staff longevity.

Respondent 0493

a. Gaps and underrepresented research areas.
Parents of the children suffering. Not a Dr. since the people charged with guarding our children's health have these things to say. "American Academy of Pediatrics 80% surveyed 2/2009 we don't want to go to DAN conferences and investigate nutritional support or biomedical interventions quite frankly if the parents don't want to put the children on drugs to control the behaviors we rather not see them. Don't waste valuable billing time discussing the merits of vaccines with parents if they don't want to vaccinate or want to alter the schedule dismiss them from the practice and report them to the state department of health for medical neglect of their children. Again talk with the people who live it and have a vested interest not in profits or kick backs or patent royalties but in HELPING THE CHILDREN.

b. New opportunities.
ASK THE PARENTS THIS MEDICAL COMMUNITY HAS SOLD OUT TO BIG PHARMA

Respondent 0494

a. Gaps and underrepresented research areas.
The government services available in my state are a JOKE. Services paid for with cash are great. The ISD's are a bigger joke. So, more money out of pocket for private school. The best place for information starts with other autism parents. Research the parents.

Respondent 0501

a. Gaps and underrepresented research areas.
Research how attitude and acceptance of autism effects the outcome of treatment methodologies and quality of life.

b. New opportunities.
Research the benefits of supportive services (occupational therapy, speech therapy, physical therapy) and how they can be coordinated with other approaches.

c. Research priorities.
Prioritize services that improve quality of life, not just target "normality" as their goal.

Respondent 0502

c. Research priorities.
Currently parents of newly diagnosed autistic children don't know where to go or what to do. Pediatricians don't even have advice! Must be a place to go, a source of information for families. Many families wander toward "fringe" treatments and services out of desperation.

Respondent 0506

a. Gaps and underrepresented research areas.
Applying chronic care model elements to ASD including the use of registries, standards, patient/family information, community agency involvement, monitoring and follow up. Another area that's underrepresented is treatment of individuals in families in rural and underserved areas.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
1. Services through the Maryland State Dept. of Developmental Disabilities Assoc. has not been successful. They have a waiting list. This organization hires private companies to encourage adults to focus on getting to work -- to become taxpayers! They are not interested in what the person with ASD wants to do with their life in relation to college. And, some of these students are interested in pursuing a career in the area of their obsession. All have abilities and talents and need time to hone in on them. 2. The Governor's Youth Transition Program is focused on getting the student with ASD to work immediately. They don\'t care about being creative in thinking of ways to support the student in obtaining their goals. 3. The colleges are on the cutting edge of trying to understand ASD and provide supports but they are limited. Stigma still exists whereby some employees have the attitude that if the person w/ASD can't communicate effectively then they shouldn't be in college

b. New opportunities.
1. Financial support- all areas of life! 2. Health Insurance whereby a person can have Medical Assistance pay their private insurance premium and everyone wins! 3. Public and private supports based on person/families needs - respite, teaching daily activities of living, financial needs, assistance in obtaining food/clothing/shelter, etc. 4. Education - colleges who are equipped to support and nurture this population. 5. Housing - finding a place with supports.

c. Research priorities.
Those who have the most needs, then age.

Respondent 0509

a. Gaps and underrepresented research areas.
Include biomedical treatments as services to be studied.

b. New opportunities.
Include biomedical treatments as services to be studied.

c. Research priorities.
Include biomedical treatments as services to be studied.

Respondent 0510

a. Gaps and underrepresented research areas.
How can I afford these services?

b. New opportunities.
More local and free access!

Respondent 0512

b. New opportunities.
There should be a comprehensive guide for children and adults with autism of the available services and programs for each state. ABA (applied behavioral analysis) therapy should be readily available as part of early intervention programs.

Respondent 0514

a. Gaps and underrepresented research areas.
LOL, Services, what services? Autism DOES NOT NEED BABYSITTERS. . . . . . it goes without saying that nothing behavior works. Nothing in our health care or government system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . or create a federal law to pay for DAN doctor treatments This is biologically caused. Do the non vaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

b. New opportunities.
LOL, Services, what services? Autism DOES NOT NEED BABYSITTERS. . . . . . it goes without saying that nothing behavior works. Nothing in our health care or government system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . or create a federal law to pay for DAN doctor treatments This is biologically caused. Do the non vaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.
c. Research priorities.

LOL, Services, what services? Autism DOES NOT NEED BABYSITTERS. . . . . . it goes without saying that nothing behavior works. Nothing in our health care or government system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . or create a federal law to pay for DAN doctor treatments This is biologically caused. Do the non vaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

Respondent 0521

a. Gaps and underrepresented research areas.
the lack of services for low and nonverbal and low verbal people with autism. The lack of "one stop shopping" wherein the various biopsychosocial and even spiritual resources are not well integrated

b. New opportunities.
the low and nonverbal subtype of people with autism merit appropriate services. Examining bias among educational, medical and social services for these people should be studied from an anthropological view

c. Research priorities.
The archaic culture of education, treatment and intervention leaves low and nonverbal children with autism without adequate resources

Respondent 0524

a. Gaps and underrepresented research areas.
I'd love to see more funding for schools that use methods besides ABA. Also, it's essential that we have services for individuals with ASD after they turn 18. We need jobs programs and assisted living support. We need safe living situations for nonverbal autistic adults who cannot defend themselves or discuss what is happening to them.

Return to top of page

Please note that all comments are provided in their original form and in their entirety with the following exceptions: 1) Spelling errors were corrected and abbreviations changed to full length words to facilitate readability and text searching and 2) profane language was redacted. Respondent numbers in the RFI are not sequential due to test cases (technical staff and others submitting dummy data to test the system, which took up a respondent number each time) and unsubmitted responses (did not hit "submit" button, despite automated reminders to do so) that were logged into the system. Also, some respondents did not provide answers to every question or subquestion. Blank responses were not posted. The comments posted reflect the opinions of members of the public who responded to the RFI. These comments are not endorsed by and do not represent the views of the Federal government.

The responses to the IACC RFI are organized by Strategic Plan question. All of the responses to each question and sub question (Parts a, b, and c where applicable) are grouped together to allow the reader to easily review all material submitted in response to each question. When reviewing the responses, it may be helpful to understand that responses were submitted sequentially. Comments such as "previous" or "see above" sometimes refer to parts a or b of a person's response for the same Strategic Plan question, but in other cases refer to parts of a response to an earlier Strategic Plan question. In the case of the latter, the earlier comment referenced can be located by navigating to the Strategic Plan question indicated and then finding the respondent number associated with the comment of interest. Similarly, respondents sometimes referenced readers to previous responses by listing a specific question number (e.g. See IIIc). These materials can be located by navigating to the question listed and locating the respondent number of interest.

Return to top of page


HHS Home | Contacting IACC | Accessibility | Privacy Policy | FOIA | Disclaimer | USA.gov | IACC Webmaster

U.S. Department of Health & Human Services • 200 Independence Avenue, S.W. • Washington, D.C. 20201