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Strategic Plan Question 4: Which Treatments and Interventions Will Help?

Respondent 2

K. MacDonald

a. What has been learned about the issues covered in this chapter in the past year?
The IACC seems to have extremely few committee members who seem to understand the biomedical treatments that parents are having so much success with. Why are there no Defeat Autism Now (DAN) doctors on this committee?! This makes no sense not to involve the most successful practitioners, especially when the public isn't given equal representation on the committee.

b. What are the remaining gaps in the subject area covered by this chapter?
Mainstream doctors and biomedical specialists (i.e., Defeat Autism Now (DAN) doctors) need to be in better communication and share ideas openly. Mainstream doctors currently seem to have little to offer other than some behavioral programs (often not available, depending on where you live) or off-label use of medications that usually don't work. On the other hand, many parents are getting great results with treatments like: dietary interventions, supplements, methyl B-12 shots (or nasal sprays), hyperbaric oxygen therapy (HBOT), and chelation, etc. As a parent who went the "mainstream route" for seven years before turning to the more alternative approach of the DAN doctors, I can say there is no comparison. I got absolutely NOWHERE with the mainstream approach, yet had almost miraculous results with the DAN approach. As a healthcare professional myself, I have to wonder what has happened to our medical integrity? Why are we not only avoiding researching treatments that seem to be helping many, but actively attacking those brave doctors who are truly trying to help? It makes no sense!

Respondent 3

b. What are the remaining gaps in the subject area covered by this chapter?
There is so little good research regarding effective treatments and interventions. Studies need to be done that have large numbers of participants receiving equal number of hours of intervention, each a different type, so that we can compare "apples to apples." Also, more unbiased studies regarding dietary, medication and biomedical treatments need to be pursued.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
The only treatment that can cure autism is chelation therapy with alpha-lipoic acid. I hope a brigade of marines with autistic kids learn that you have been lying about this and they [threatening language redacted]. That's what you [profane language redacted] deserve.

Respondent 5

Gail Elbek
Child Health Advocates

a. What has been learned about the issues covered in this chapter in the past year?
Research into developmental soy endocrine-disruptor causation of autism and mental illness remains IACC-disregarded.

b. What are the remaining gaps in the subject area covered by this chapter?
The most urgently important gap remaining in IACC investigative research of ASD are the hundreds of published studies all confirming soy-endocrine-disruptor causation of extensive developmental neurological as well as physiological irreversible damage to fetus, infants, and children exposed.

Respondent 6

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

a. What has been learned about the issues covered in this chapter in the past year?
Developmental language disorder is the core handicap of children with autism.

b. What are the remaining gaps in the subject area covered by this chapter?
Teach children to hear syllabic stress and boundaries between syllables and words. Engage researchers with interests in hearing disorders and development of novel hearing aids.

Respondent 7

a. What has been learned about the issues covered in this chapter in the past year?
Further evidence has accumulated that reinforces the involvement of immune-related factors in ASD. It is clear that immune-related molecules are upregulated in the brain and cerebral spinal fluid (CSF) in autism, and that there are abnormalities in the peripheral immune system as well. These findings should be further validated in detail in human studies as well as in animal models with face and construct validity, such as the maternal infection model. There are also many indications of gastrointestinal (GI) problems in ASD and these require further validation as well as exploration in relevant animal models.

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
Looks good :)

Respondent 9

Susan Lin
American Occupational Therapy Association

a. What has been learned about the issues covered in this chapter in the past year?
The American Occupational Therapy Association (AOTA) strongly supports the aspirational goal pertaining to Question 4 to develop interventions that are effective for reducing both core and associated symptoms, for building adaptive skills, and for maximizing quality of life and health for people with an ASD. Occupational therapy practitioners work with individuals and their families to improve adaptive skills and daily functioning (e.g., basic and instrumental activities of daily living), reduce problem behaviors, and increase their quality of life and health via performance of meaningful occupations, adhering to healthy routines and habits, and participating in communities. The AOTA recently created an Occupational Therapy Research Agenda, which identifies intervention research as one of the most important priorities (Rogers, et al., in press). Therefore, we praise the IACC for recognizing the need to "test [the] safety and efficacy of at least five widely used interventions that have not been rigorously studied for use in ASD," including sensory integration. We recommend replacing the term sensory integration with the phrase occupational therapy using a sensory integrative approach for two reasons. First, occupational therapists use a variety of theories and approaches to evaluate and treat an individual within the contexts of family and varied environments. Occupational therapy's ultimate goal is to promote a client's ability to perform daily occupations and meaningfully participate in society. Modifying the environment because of the individual's sensory needs or sensitivities and teaching individuals how to perform activities of daily living (e.g., brushing teeth, getting lunch in the cafeteria) are some of the important interventions that individuals with an ASD need in order to perform their daily occupations as independently as possible but may not be considered specific sensory integration therapy. While it is important to study sensory integration as both a theory and approach to intervention, we advocate for a slightly broader perspective so that other occupational therapy interventions could be considered as well. Secondly, the term "sensory integration" can be misinterpreted; some understand it as a neuroscience term and still others interpret it as any intervention utilizing a sensory component, as in sensory-motor stimulation. Sensory integration is a practice theory about brain-behavior relationships, with principles stemming from neuroscience and occupational therapy (Lane & Schaaf, 2010). Therefore, when reviewing studies and proposals about sensory integration, it is critical to have clear parameters and definitions about the sensory integration protocol. For example, several occupational therapists have developed a fidelity measure to determine if the intervention meets the essential tenets of sensory integration therapy, as defined by Dr. Jean Ayres (Parham, et al., in press; Parham, et al., 2007). The AOTA also strongly supports IACC's call for research to "improve functioning and quality of life for people with an ASD across the lifespan, including older children, adolescents, and adults with an ASD." Parents want their children to participate with their peers, so understanding and addressing behaviors that promote participation in social events or settings is a family priority. One of the outcomes of occupational therapy using a sensory integrative approach is that parents better understand their children's behaviors. Occupational therapists can help identify why children will not wear certain clothing or why they act out in public settings, and collaborate with parents to identify potential solutions. Being able to take their children to grocery stores, restaurants, shows, or sporting events could decrease some parental stress and increase community integration. Finally, the AOTA is pleased to see that family functioning is emphasized as an outcome in "two multisite randomized controlled trials of comprehensive early intervention." Since occupational therapy is identified as a primary service provider in early intervention programs under Part C of the Individuals with Disabilities Education Act (IDEA), we recognize the importance of providing support, education, resources to families. In order to improve outcomes of young children with an ASD, family context, culture, and their environments must be considered.

Respondent 10

Andrea Payne

a. What has been learned about the issues covered in this chapter in the past year?
Our son is in occupational therapy (OT) for sensory integration, speech therapy, sensory motor social skills groups and music therapy. We also use behavior modification and applied behavior analysis (ABA) practices. We also use various medications for the coexisting conditions. We use a variety of communication forms. Music therapy focuses on the skills from other therapies, but has shown to be effective with our son in ways that traditional therapies were not. Music is processed in different portions of the brain than language, and therefore accesses pathways that we previously could not connect - even with his language skills.

b. What are the remaining gaps in the subject area covered by this chapter?
It's a puzzle. It's about finding the areas that affect the child the most and ways to provide interventions that will teach them the life skills that are lacking. It's about putting together the pieces and understanding that the picture of our children will never be seamless. It's about understanding that in seven years he's going to want to work a job and drive a car and he's not going to have any chance of doing that if at 9 he can't maintain eye contact or look both ways before dashing into the street after the shiny penny across the way. These kids do not get this by natural occurrence like most of us - they have to be given it. It's imperative. It's life defining.

Respondent 13

Rebecca Kotter

b. What are the remaining gaps in the subject area covered by this chapter?
Please investigate approaches beyond traditional applied behavior analysis (ABA). ABA methods can be very helpful in teaching routines, such as teeth-brushing and shoe-tying, but did little to aid in teaching our child genuine empathy and social awareness. In fact, I believe ABA teaching methods contributed to our son's rigidity and need for completely static structure, since ABA strategies are often very predictable and static. Please investigate other strategies, particularly interventions that can be carried out by family members rather than relying on professionals. What day-to-day interventions can families use to help their child with ASD? Also, please investigate the use of sign language rather than picture communication. We found picture communication to lack in spontaneity (child must find the set of pictures, flip through the book, locate picture, bring picture...it hardly seemed worth it to communicate). Sign language has been very spontaneous and user-friendly for us. Yet we constantly run into speech-language pathologists and other professionals who discourage the use of signing because the signing audience is smaller. Professionals should help families find interventions that work for them rather than using their personal bias to guide treatment.

Respondent 14

Kim

a. What has been learned about the issues covered in this chapter in the past year?
Temporary use of mild to moderate skin shock therapy (much like a transcutaneous electrical nerve stimulation (TENS) unit type deal) should be reconsidered as an ADJUNCT to behavioral/medical therapies dealing with severe self-injury among autistics. Too many self-abusive autistics are suffering from ineffective therapies that repeatedly fail to address serious self-injury. Temporary, well supervised skin shock therapies actually teach self-control and are often less harmful than Geodon, Haldol, Thorazine, in long run.... Of course low doses of pharmaceuticals plus acute EMERGENCY use of skin shock therapy is another option and should be considered. We have come too far now to ignore that skin shock therapy does indeed help some autistics who CAN'T stop hitting themselves, and it's a good emergency intervention for when all other therapies fail. It could be prescribed when needed just like injections of Seroquel are given when a person has an extreme meltdown. Ideally, the skin shock therapy should be used as a medically prescribed emergency rescue assistive technology device for extreme self-injury likely to cause immediate bodily injury if NOT quickly stopped. It would be marketed as if a TENS unit, in the way that the public needs to UNDERSTAND that when the autistic person get so worked up, they simply can't stop mutilating themselves, so this is an emergency use of medical device to protect them. Education should assuage the naysayers who are largely ignorant of this rare population. Skin shock therapy should also be developed so it can be discreetly worn as a bracelet or watch like device, so that when it's needed to deliver the therapeutic skin shock therapy during emergency meltdowns that can't be otherwise stopped with less aversive means, you can use it. Keep in mind sometimes you can't even get an emergency intramuscular (IM) medication into a 6'2" autistic man who weighs 240 lbs and who is slamming his head into concrete. It takes five people to control him. When skin shock therapy is used, it brings fast control, so the medications can then be administered.

Respondent 15

George

a. What has been learned about the issues covered in this chapter in the past year?
Nothing new, to be honest. You have not mentioned any new treatment models that may be looked at but report old applied behavior analyst (ABA) studies that may not be appropriate for all age groups (0-3 years old). If everyone is going to get hung up on evidence-based practice (EBP) we never may see other types of treatment. Look, if ABA was so successful we would see it being used to successfully in treatment in other diseases/disorders (reading, writing, stuttering, etc.). You all seem to be going in a circular fashion which keeps going back to ABA. Look ABA is more powerful when combined with a program like the Developmental, Individual Difference, Relationship-based DIR/Floortime Model. The most powerful variable to the treatment is "pairing" therapist with child. As a wonderful psychologist once told me, "the right chemistry between therapist and patient" and the treatment approach may be secondary. Removing the art from treatment may come back and haunt us in the future. As far as "the golden rule" in ABA research being used, I don't recall? As with human immunodeficiency virus (HIV), I think we are better off using a cocktail approach in treatment. Please let's be real - 20-40 hours of ABA therapy for 0-3 year-olds. Pull this in a little, please guys. Most of the children I work with can not handle it and some of these ABA teachers are lacking experience and credentials. Now we are going to use aides to ABA teachers, GOOD LORD!

b. What are the remaining gaps in the subject area covered by this chapter?
You are not looking at other approaches that may deserve mentioning?

Respondent 16

Family Voices-NJ

a. What has been learned about the issues covered in this chapter in the past year?
We also highly recommend expanding on the National Research Council's "Educating Children with Autism" at www.nap.edu This link exits the Interagency Autism Coordinating Committee Web site which was clinically researched interventions proven effective in the treatment of autism thus far. Due to the high use of alternative interventions, we would recommend the use of the National Institutes of Health's research of the National Center for Complementary and Alternative Medicine found at http://nccam.nih.gov.

b. What are the remaining gaps in the subject area covered by this chapter?
1.) We agree that some adaptive technologies are helpful but also suggest the use of "total communication" using sign language and speech simultaneously prior to using facilitated communication. While we agree that applied behavior analysis (ABA) has been researched as proven effective, we are concerned with the lack of standardization for qualifications of behaviorists, and believe a more eclectic approach (e.g., combined ABA/Developmental, Individual-Difference, Relationship-Based model (DIR/Floortime) or Miller Method) as most effective. We would suggest the addition of social skills as an intervention to be researched because this will aid in successful transition to adult life. We are deeply concerned that challenging behaviors often result in the inappropriate use of aversive interventions, restraints, and seclusion which are harmful to children with autism. We urge the IACC to address this. Further, positive behavior supports must be utilized as the preventive and intervention method of choice. We recognize also that no medication has been U.S. Food and Drug Administration (FDA) approved for autism but again caution against "chemical restraint" and recommend that any prescriptions, if needed, be used in conjunction with other therapy. 2.) We strongly support treatment of coexisting medical and especially psychiatric conditions, as there remains a "de-linking" of services between the developmental disabilities and mental health communities despite the high occurrence.

Respondent 17

Roseann Schaaf
Thomas Jefferson University

a. What has been learned about the issues covered in this chapter in the past year?
We now know that occupational therapy using a sensory integration approach is among the most requested services by parents of children with autism spectrum disorders (Mandell, et al., 2005; Green, et al., 2006), and although the preliminary data on this intervention is promising (Schaaf, 2010, as cited in Volkmar, et al., 2010), there is a paucity of large-scale randomized controlled trials.

b. What are the remaining gaps in the subject area covered by this chapter?
Intervention that incorporates the principles of sensory integration is one of the most requested services by parents of children with autism spectrum disorders (Mandell, et al., 2005; Green, et al., 2006). National Institutes of Health (NIH) funded studies are needed to establish the safety and efficacy of the sensory integration approach for individuals with autism spectrum disorders. Occupational therapy scientists need to be included in this work as this intervention is firmly seated within the domain of occupational therapy and utilizes professional standards established by the occupational therapy profession. This will assure that the intervention is in keeping with the central principles of the approach, that the manualized protocol is utilized (Schaaf, Blanche, Mailloux, et al., 2010), and that the tools developed to test its fidelity are utilized accurately (Parham, et al., 2010). Although several grants have been submitted to the NIH over the past seven years to study this intervention, they are often scrutinized harshly by individuals bias against this approach, and thus, there has been limited funding to study this highly utilized intervention. We have a responsibility to support this research to provide guidance to parents and educators about its efficacy and effectiveness.

Respondent 18

Holly Masclans

a. What has been learned about the issues covered in this chapter in the past year?
This area is an embarrassment to the American people. Nothing the committee has uncovered has helped my children or any autistic children I know. The committee should be ashamed of itself.

b. What are the remaining gaps in the subject area covered by this chapter?
What can be done to repair the amygdala? What kind of therapy works? Cognitive behavior therapy? Acupuncture? Medication? What therapy do veterans with brain damage receive? How about stroke patients? Will any of these therapies help our children? We have done many biomedical interventions with our children. Such as chelation, diet, hyperbaric oxygen therapy (HBOT) and they have definitely improved their overall health. However there is the brain damage!!! Do my children need more HBOT? What educational therapies work? Neurofeedback, Tomatis method, interactive metronome therapy, Fast ForWord, Brain Gym, neurodevelopmental exercises. None of these therapies are covered by insurance. Unless their effectiveness can be documented they are unaffordable for most families with children suffering from autism. Is the therapy that author of "Look Me in the Eye," John Elder Robinson, receives at the TMS lab at Boston's Beth Israel Deaconess Medical Center being investigated for younger children?

Respondent 20

a. What has been learned about the issues covered in this chapter in the past year?
Treatments and Interventions would revolve around prevention of the depletion of glutathione, and failing that, interventions that would tend to raise glutathione levels. Obviously, elimination of the use of acetaminophen in infants would be an immediate first step. Additionally, use of antifungal medications and use of probiotics to restore the healthy gastrointestinal (GI) tract flora would likely be efficacious. Multiple methods of restoring glutathione would include administration of the glutathione precursor, N-acetylcysteine. Glutathione is poorly absorbed by the GI tract so it might be administered topically, or intravenously or intramuscular infusion. B vitamins are also required for the transformation of methionine into cysteine and then into glutathione.

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
There seems to be incredible hostility to all forms of treatment except applied behavior analysis. The Autism Research Institute (ARI) has a database of over 20,000 parent-rated treatments, yet the most promising among these (methyl B-12, chelation, special diets, food allergy treatment, and melatonin) have not been extensively studied.

b. What are the remaining gaps in the subject area covered by this chapter?
I would like to see extensive research on kids who have recovered. What treatments did they use? Why were certain treatments effective? Why were others not effective? Why do some kids recover and others do not? There seems to be almost no interest among researchers with respect to recovered kids. I believe kids who have recovered are documented on the Autism Research Institute (ARI) website. I would also like to see research into treatment for older kids, adolescents, and adults. Once my son hit puberty, the only treatments we were ever offered were drugs. Most drugs just made him worse. It seems that after the "early intervention" window has closed, the medical and educational communities just give up on autistic kids.

Respondent 23

Age of Autism

b. What are the remaining gaps in the subject area covered by this chapter?
I personally know dozens and dozens of top doctors providing biomedical treatment for autistic children. As a teacher, I work with autistic children. One severely affected 16 year old girl I see several times a week was completely nonverbal until she underwent chelation at age 7. Within two weeks she began to talk for the first time! There are thousands of parents who have seen remarkable improvement and even recovery from autism with therapies like diet, supplements, chelation, and hyperbaric oxygen treatment. How hard would it be to study the children who've been helped by these treatments? The big questions for me concern the relevance of the IACC. How long will the IACC have nothing to report to Congress? How long will the IACC fund studies that give us no real answers? How long will IACC ignore the children?

Respondent 24

Ray Gallup

b. What are the remaining gaps in the subject area covered by this chapter?
The autoimmune/gastro link and vaccine link to the ASD epidemic. Figures from the U.S. Department of Education as well as from the U.S. Social Security Administration (SSA) show there is an epidemic and I am tracking that. [personally identifiable information redacted]

Respondent 25

Maria Durci

b. What are the remaining gaps in the subject area covered by this chapter?
The efficacy of a gluten-free, casein-free diet, allergen avoidance, and supplementation has many anecdotal reports touting their effectiveness. It is time for well-run studies to put the science behind this. At the least follow families already committed to pursuing these interventions and monitor the changes that occur in their children physically, educationally, & behaviorally including changes in sensory issues, speech and language, gut health, aggression, allergic symptoms, nutritional levels, neurology, etc. Thousands of parents can't be making this up. Look carefully at recovered children and recovering children, please.

Respondent 26

b. What are the remaining gaps in the subject area covered by this chapter?
I recently learned that there are barely any studies being done on adults with ASDs. There is very little grant money available to study this population. We are the guinea pigs in this area. My Asperger's son is 21 years old. He has made tremendous progress in the last three years. But without evidence-based interventions to call upon, oftentimes we feel like we are flying blind. The focus needs to shift from all studies focusing on the deficit areas to ones that look at what supports work throughout the lifespan. And I assume those supports will change as the person with ASD ages. I don't need a cure. What my son needs are supports and programs that work and will allow him to live a full self-determined life.

Respondent 27

b. What are the remaining gaps in the subject area covered by this chapter?
1.) The gluten-free, casein-free, soy-free diet as an approach to treat gluten/casein intolerances as neurological illness of immunological basis. Research in detection beyond celiac disease or milk allergy in ASD. Checking of toxic (lead/cadmium/aluminum/mercury/arsenic/others) and essential elements (zinc/calcium/magnesium/others) in blood, hair, urine, fecal stool during a gluten-free, casein-free, soy-free diet without selenium or amino acids supplementation to detect imbalances in transport systems of toxic/essential elements with time on diet. The best procedure to follow if toxic elements in abnormal concentrations are demonstrated to be present. Research in adequate testing and treatment for ASD; 2.) the role of metabolic/mitochondrial/gastrointestinal (GI)/immune support and the changes that metabolic/mitochondrial/GI/immune treatment brings to the health of autistic children with metabolic/mitochondrial/GI/immune problems properly tested and diagnosed; 3.) the importance of dietary, antifungal, antibacterial and GI/nutritional support treatment (combined) in the well-being of autistic children when proper combination testing demonstrates the need of; 4.) the importance of antiviral treatment when the testing demonstrates concomitant medical problems with viruses (herpes, ribonucleic acid (RNA) viruses, etc.). Analysis of the role of streptococcus infection in autistic biochemistry and physiology. Lyme disease and ASD. Impact of neurotrophic infectious agents in ASD. Analysis of the better treatment for these concomitant medical conditions in autistic people individually in these cases; 5.) the development of a screening protocol (involving the GI, immune, liver/kidney/glutathione status and xenobiotics management, nutritional/metabolic status, dietary) in parallel to the ASD diagnosis with the Diagnostic Statistical Manual, 4th Edition (DSM-IV) involving the testing that can detect the concomitant medical conditions to ASD that today can remain undetected/undiagnosed/untreated because of the current paradigm. Please note that my emphasis is in the Treatment of the concomitant medical problems and Not in a "Cure for ASD" per se but with the goal of life quality for autistic children/teens/adults. Impact in the short-/long-term in the well-being/language/communication/independence of autistic people of the proper treatment-or not--of these conditions. Impact of the proper medical treatment of concomitant medical problems plus a rational educational approach based on the development of strengths and supporting weaknesses related to individual. Opinion of autistic people of all ages--as much as possible--treated with these approaches on the topic; 6.) the role of common medication used in ASD (attention-deficit hyperactivity disorder (ADHD) medication, neuroleptics, antipsychotic, etc.) in the well-being of autistic people of all ages. Impact in the long time range for children and in the well-being of teens and adults in the spectrum. Problems with secondary effects. Opinion of the families of autistic children/teens/adults in the perception of well-being of autistic children/teens/adults, behaviors and communication. Opinion of autistic adults/teens on all these topics.

Respondent 28

J. Fenech

a. What has been learned about the issues covered in this chapter in the past year?
Alternative medicine is a misnomer. Our bodies are supposed to be able to heal themselves. More drugs is not the answer. We need to stop the mantra of "better living through chemistry." Western medicine needs to look at EVERYTHING and open their minds to other medicine that has been around a heckuvalot longer. Just because it is not a drug does not mean it should be ignored. Better living through chemistry? Is that all that western medicine has become - better chemists? Look at the state of our children's health. Not a good track record for western medicine.

Respondent 31

American Psychological Association

b. What are the remaining gaps in the subject area covered by this chapter?
We support the IACC's plan to support clinical research that will focus on effectiveness research and also comparison trials. While randomized controlled trials are needed to evaluate the effectiveness of medication in controlling challenging behavior, it is critical that this type of inquiry also address the effectiveness of common interventions such as positive behavior support (PBS), separately and in combination with medications. PBS has been demonstrated effective in preventing and addressing challenging behavior yet there is a dearth of research examining its use with and without psychopharmacological interventions. Many interventions for ASD are comprehensive, time-intensive, and extremely costly. Service costs and cost-benefit analyses should be a more standard component of evaluation studies. While there is some recognition that many children with ASD rely on education-based services, there is no mention of studying school-based strategies specifically. Many families lack resources, both financial and time, to secure private services. Moreover, parents often must spend considerable time advocating, researching, and supporting their child with ASD alongside maintaining the household and caring for other children, leaving little time for doctors' visits, extracurricular activities, etc. In short, there are children who must rely on what they can get during the school day.

Respondent 32

b. What are the remaining gaps in the subject area covered by this chapter?
I would request that further research be conducted in the area of teaching nonverbal or minimally verbal autistics to read and write/type as a way to communicate. There has been a focus on the usage of sign language or Picture Exchange Communication System (PECS) for this group with varying degrees of success. There is some anecdotal evidence that some low-functioning children with autism are hyperlexic. For some nonverbal individuals the use of the keyboard has been the means of allowing them to communicate and participate in educational settings when prior to their usage of keyboard skills they were thought to have low IQs. We need more research and an understanding of how the ability to read and write at normal levels coexists with an inability to communicate verbally and we need a sound educational method developed to teach reading and writing/typing to these nonverbal individuals. Many of these individuals are assumed to not have the ability to learn these skills since verbal development typically precedes the ability to read and write. These assumptions may be incorrect and the teaching of reading and writing/typing should be considered as an alternative form of communication for these individuals. Of particular interest we would like the educational strategies outlined in the manual for the Rapid Prompting Method to be thoroughly analyzed. These strategies are targeted toward the population who seem to make limited progress with applied behavior analysis (ABA).

Respondent 35

Marc Rosen

b. What are the remaining gaps in the subject area covered by this chapter?
Insufficient funding of self-determination services.

Respondent 38

Audrey Smerbeck

b. What are the remaining gaps in the subject area covered by this chapter?
"Methods of measuring changes in ASD core symptoms" is listed as one of the goals. This is important, but it may also be important to measure changes in important quality-of-life related domains that may or may not depend on altering the ASD itself, such as depression or employment. I see nothing listed about eliciting the treatment-related values or beliefs of adolescents and adults with ASD. Before pursuing a plan to validate or debunk a treatment, its acceptability to the target population should be studied. Examine the efficacy of traditional one-to-one psychotherapy for adolescents and adults with ASD, both for improving core symptoms and for improving co-morbid problems. Examine the degree to which community counselors have knowledge of ASDs and effective treatment practices.

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

b. What are the remaining gaps in the subject area covered by this chapter?
Evidence-based comparative effectiveness research that identifies effective treatments is needed. While there are many early-stage efficacy investigations available that provide preliminary support for the efficacy of speech-language pathology interventions to improve speech, language, and social communication, much more research is needed. In particular, group design studies directly comparing the effectiveness of different approaches using randomly assigned, matched control samples with sufficient sample sizes, and adequate statistical power are needed. To date, the evidence is inconclusive regarding whether any one approach is more effective than another. There also needs to be greater emphasis placed on subgroups within the ASD population and the responsiveness of these subgroups to various treatment approaches. Comparative effectiveness research should clarify our understanding of the effectiveness of different intervention approaches, especially with respect to which approaches provide the most meaningful communication and social interaction outcomes for young children with autism. Given that the core features of ASD entail impairments of social communication and language use, the discipline of speech-language pathology has much to contribute to future research evaluating the comparative effectiveness of approaches to treating social, communication, and cognitive impairments in ASD. Research also is required to determine how common practice in screening, assessment, and treatment is affected by state and local regulation and state interpretation of federal guidelines. The American Speech-Language Hearing Association (ASHA) suggests inserting the word communication into the following Short-Term Objective: B. Test safety and efficacy of at least five widely used interventions (e.g., nutrition, medications, assisted technologies, sensory integration, communication, medical procedures) that have not been rigorously studied for use in ASD by 2012. IACC recommended budget: $27,800,000 over five years. Regarding the following objective: Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011. ASHA suggests that these trials be directed to evaluating the comparative effectiveness of approaches to treating speech-language, social, communication, and cognitive impairments in ASD. Examination of the impact of changes in frequency, intensity, and duration of treatment is a critical issue to be included in these trials. Although they do talk about frequency/intensity and duration studies it is not linked specifically to speech language pathology (SLP), social communication and cognitive impairments as above. ASHA suggests adding the following objective: By 2012, conduct three randomized controlled trials to test the efficacy and/or effectiveness of interventions to treat speech, language, social communication, and cognitive impairments for school-aged and/or adolescent persons with ASD, evaluating the comparative effectiveness of approaches in ASD. Examination of the impact of changes in frequency, intensity, and duration of treatment is a critical issue to be included in these trials.

Respondent 40

b. What are the remaining gaps in the subject area covered by this chapter?
Study the kids who have recovered from ASDs. What treatments did they use? The Autism Research Institute would be a good place to start since they have stories of kids who have recovered.

Respondent 43

Michael Framson

a. What has been learned about the issues covered in this chapter in the past year?
Biomedical (Biomed)

Respondent 45

b. What are the remaining gaps in the subject area covered by this chapter?
If a retrovirus is involved, antiretrovirals might be an avenue for research. The retroviral link needs to be substantiated and investigated with enthusiasm. Why is polymerase chain reaction (PCR) unable to detect xenotropic murine leukemia virus-related virus (XMRV) unless the patient sample is cultured and stimulated? Is it that the viral genome shifts to take advantage of the dysfunctional RNASL cell line or because of some novel translation/transcription? It is important to think of the viral genome not as a strand of deoxyribonucleic acid (DNA), but as a probability cloud. The mutation rate during transcription is not an error rate, but a decompression ratio.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
Most treatments have never been tested and are faith-based instead of evidence-based. Many are damaging.

b. What are the remaining gaps in the subject area covered by this chapter?
Adaptive communication technology needs to get much better. 'Box Speak' needs to be organized according to intrinsic sense, not imitation of standard language. Much more emphasis on functional language and activities.

Respondent 48

Jason Bourret, Ph.D., BCBA-D
NECC

a. What has been learned about the issues covered in this chapter in the past year?
My name is Jason Bourret and I am a doctoral-level Board Certified Behavior Analyst (BCBA) currently serving on the Board of Editors of the Journal of Applied Behavior Analysis and answering this request for information (RFI) on behalf of the New England Center for Children (NECC). NECC appreciates the opportunity to respond to this RFI and commends the IACC on their continued work on this Strategic Plan for autism spectrum disorder (ASD) research. Question 4 of the plan is most relevant to our work and research and our response to the RFI is specifically with regard to Question 4. The Strategic Plan notes that, although there are procedures that have been shown to be effective in teaching and treating behavior problems in individuals diagnosed with autism, methods designed to identify which treatment will be effective with any given child are lacking. In the past year, there have been several advances in the development of methods for empirically assessing and selecting appropriate interventions within the field of applied behavior analysis (ABA). Most generally, this research might be broken into two overarching areas: Research on methods for identifying which problem behavior treatments will be effective with particular individuals and research on methods for individualizing teaching strategies to meet the needs of individual learners. Methods for empirically selecting and validating effective treatment for problem behavior have existed for over 25 years (Hanley, Iwata, & McCord, 2003). These assessments involve an empirical demonstration of the function of the problem behavior (i.e., whether it serves some sort of communicative function for the individual, is self-stimulatory in nature, etc.) and have been shown to identify effective, individualized treatment in hundreds of published studies (Hanley, Iwata, & McCord). In the past year, further significant advances have been made in refining these assessments. Methods have been developed to explore in more detail the role of attention and escape from demands in maintaining problem behavior (Call, Pabico, & Lomas, 2009; McGinnis, Houchins-Juarez, McDaniel, & Kennedy, 2010; Rodriguez, Thompson, & Baynham, 2010; Roscoe, Rooker, Pence, & Longworth, 2009), assess the role of various antecedents in causing problem behavior (Dolezal & Kurtz, 2010; Kuhn, Hardesty, & Luczynski, 2009), help allow the identification of preferences without inducing tantrums or other problem behavior (Kang, Lang, O'Reilly, Davis, Rispoli, & Chan, 2010), address behavior problems that are particularly challenging to assess (Bachmeyer, Piazza, Fredrick, Reed, Rivas, & Kadey, 2009; Contrucci Kuhn, & Triggs, 2009; Barnoy, Najdowski, Tarbox, Wilke, & Nollet, 2009; Herscovitch, Roscoe, Libby, Bourret, & Ahearn, 2009; Lang, et al., 2010), assess complex hierarchies of problem behavior (Shabani, Carr, & Petursdottir, 2009), and assess patterns of perseveration (Kuhn, Hardesty, & Sweeney, 2009). Assessments for identifying effective teaching approaches for particular individuals have not been as thoroughly researched. However, in the past year research has demonstrated methods for empirically identifying student preferences for different teaching approaches (Heal, Hanley, & Layer, 2009; Luczynski, & Hanley, 2009), preferences for various activities (Daly, Well, Swanger-Gagne, Carr, Kunz, & Taylor, 2009), and the effects of including choice as part of teaching procedures (Schmidt, Hanley, & Layer, 2009). Bachmeyer, M. H., Piazza, C. C., Fredrick, L. D., Reed, G. K., Rivas, K. D., & Kadey, H. J. (2009). Functional analysis and treatment of multiply controlled inappropriate mealtime behavior. Journal of Applied Behavior Analysis, 42, 641-658. Barnoy, E. L., Najdowski, A. C., Tarbox, J., Wilke, A. E., & Nollet, M. D. (2009). Evaluation of a multicomponent intervention for diurnal bruxism in a young child with autism. Journal of Applied Behavior Analysis, 42, 845-848. Call, N. A., Pabico, R. S., & Lomas, J. E. (2009). Use of latency to problem behavior to evaluate demands for inclusion in functional analyses. Journal of Applied Behavior Analysis, 42, 723-728. Contrucci Kuhn, S. A., & Triggs, S. (2009). Analysis of social variables when an initial functional analysis indicates automatic reinforcement as the maintaining variable for self-injurious behavior. Journal of Applied Behavior Analysis, 42, 679-683. Daly, E. J., Well, N. J., Swanger-Gagne, M. S., Carr, J. E., Kunz, G. M., & Taylor, A. M. (2009). Evaluation of the multiple-stimulus without replacement stimulus preference assessment method using activities as stimulus events. Journal of Applied Behavior Analysis, 42, 563-574. Dolezal, D. N., & Kurtz, P. F. (2010). Evaluation of combined-antecendent variables on functional analysis results and treatment of problem behavior in a school setting. Journal of Applied Behavior Analysis, 43, 309-314. Hanley, G. P., Iwata, B. A., & McCord, B. E. (2003). Functional analysis of problem behavior: A review. Journal of Applied Behavior Analysis, 36, 147-185. Heal, N. A., Hanley, G. P., & Layer, S. A. (2009). An evaluation of the relative efficacy of and children's preferences for teaching strategies that differ in amount of teacher directedness. Journal of Applied Behavior Analysis, 42, 123-144. Herscovitch, B., Roscoe, E. M., Libby, M. E., Bourret, J. C., & Ahearn, W. H. (2009). A procedure for identifying precursors to problem behavior. Journal of Applied Behavior Analysis, 42, 697-702. Kang, S., Lang, R. B., O'Reilly, M. F., Davis, T. N., Rispoli, M. J., & Chan, J. M. (2010). Challenging behavior during preference assessments: An empirical analysis and practical recommendations. Journal of Applied Behavior Analysis, 43, 137-141. Kuhn, D. E., Hardesty, S. L., & Sweeney, N. M. (2009). Assessment and treatment of excessive straightening and destructive behavior in an adolescent with autism. Journal of Applied Behavior Analysis, 42, 355-360. Kuhn, D. E., Hardesty, S. L., & Luczynski, K. (2009). Further evaluation of antecedent social events during functional analysis. Journal of Applied Behavior Analysis, 42, 349-353. Lang, R. B., Davis, T. N., O'Reilly, M. F., Machalicek, W., Rispoly, M. J., Sigafoos, J., Lancioni, G., & Regester, A. (2010). Functional analysis and treatment of elopement across two school settings. Journal of Applied Behavior Analysis, 43, 113-118. Luczynski, K. C., & Hanley, G. P. (2009). Do children prefer contingencies? An evaluation of the efficacy of and preference for contingent versus noncontingent social reinforcement during play. Journal of Applied Behavior Analysis, 42, 511-525. McGinnis, M. A., Houchins-Juarez, N., McDaniel, J. L., & Kennedy, C. H. (2010). Abolishing and establishing operation analyses of social attention as positive reinforcement for problem behavior. Journal of Applied Behavior Analysis, 43, 119-123. Rodriguez, N. M., Thompson, R. H., & Baynham, T. Y (2010). A method for assessing the relative effects of attention and escape on noncompliance. Journal of Applied Behavior Analysis, 43, 143-147. Roscoe, E. M., Rooker, G. W., Pence, S. T., & Longworth, L. J. (2009). Assessing the utility of a demand assessment for functional analysis. Journal of Applied Behavior Analysis, 42, 819-825. Schmidt, A. C., Hanley, G. P., & Layer, S. A. (2009). A further analysis of the value of choosing: Controlling for illusory discriminative stimuli and evaluating the effects of less-preferred items. Journal of Applied Behavior Analysis, 42, 711-716. Shabani, D. B., Carr, J. E., & Petursdottir, A. I. (2009). A laboratory model for studying response-class hierarchies. Journal of Applied Behavior Analysis, 42, 105-121. Winborn-Kemmerer, L., Ringdahl, J. E., Wacker, D. P., & Kitsukawa, K. (2009). A demonstration of individual preference for novel mands during functional communication training. Journal of Applied Behavior Analysis, 42, 185-189.

b. What are the remaining gaps in the subject area covered by this chapter?
Although the IACC recognizes the need for assessments to identify which treatments will be effective for particular individuals, the Strategic Plan does not currently call for research that will result in the development and refinement of these methods. We urge the IACC to include research on assessments using empirical evidence to inform selection of treatments and curricula for specific individuals as an explicit focus under Question 4. Additionally, we urge the IACC to call for the inclusion of representation from the field of applied behavior analysis at the workshop in Objective E.

Respondent 54

Rebecca Estepp
SafeMinds

a. What has been learned about the issues covered in this chapter in the past year?
Per the Autism Research Institute parent ratings of treatment usefulness (n = 27,000), the five top-rated interventions are chelation therapy, supplemental methyl B-12, specific carbohydrate diet, food allergy treatment, and melatonin (http://www.autism.com/pdf/providers/ParentRatings2009.pdf This link exits the Interagency Autism Coordinating Committee Web site). These interventions should be investigated. Clinicians report a variety of co-occurring medical conditions, including metabolic abnormalities, oxidative stress, mitochondrial dysfunction, body burdens of heavy metals, gastrointestinal dysfunction and pathology (constipation, diarrhea, ulcerative colitis, esophagitis, and malabsorption), dietary allergies, and immune abnormalities. They report that appropriate identification and treatment of these underlying medical abnormalities often results in improved behavior and in some instances a loss of ASD diagnosis. Investigations into the incidence of these conditions and into best treatment practices represent a critical unmet need. ASD heterogeneity must be considered when designing clinical trials. It is essential not to apply treatments across the broad spectrum but instead to identify subgroups of those who have documented medical histories or laboratory data indicating they are likely responders. It is necessary to develop multifaceted treatment modalities (as opposed to single-treatment designs) due to the complexity of medical comorbidities. Treatment of just one condition might not be as successful as treatment of several co-occurring conditions. Clinical trial methodologies must be developed that can accurately assess effectiveness of complex regimens. Recent research documented low cholesterol in an ASD subset and a clinical trial is underway regarding cholesterol supplementation. It has been the experience of clinicians that those with ASD suffer with a wide range of nutritional deficiencies and metabolic abnormalities. Hypocholesterolemia is merely one of numerous metabolic abnormalities frequently found in ASD and most likely arises from a more upstream pathology. Some clinicians postulate an inability to adequately digest as a consequence of mucosal inflammation and villous destruction resulting in deficiencies of the various enzyme populations residing in the brush border of the villi. Nutritional deficiencies should be fully evaluated to better understand underlying pathology (versus symptom resolution) to identify the most effective treatment regime.

b. What are the remaining gaps in the subject area covered by this chapter?
Short-term objective 2 that addresses co-occurring medical conditions in ASD should target conditions arising from altered/impaired immune, metabolic, and gastrointestinal function. Short-term goal C involving assessments of safety and efficacy of five widely used interventions should target those reported by parents as being most effective, such as chelation therapy (or therapy aimed at increasing glutathione and promoting detoxification pathways), supplemental methyl B-12, specific carbohydrate diet, food allergy treatment, and melatonin. Clinical trials should consider heterogeneity and subgroup based on historical or laboratory data indicating potential for benefit from the proposed treatment or intervention. Clinical trial methodologies that can assess effectiveness of multiple treatment regimens should be employed.

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Please note that respondent numbers are not sequential due to the fact that some respondents did not provide an answer to each question or sub-question. Some respondents indicated that they wished to have their name and/or affiliation be associated with their response, and in those cases, the information is provided at the top of the response.

Typographical and spelling errors have been corrected and abbreviations lengthened to facilitate searching the document. Every effort was made to avoid altering the meaning of the comments. Responses that referenced an individual respondent's earlier responses (e.g. "See above.") and did not contain additional information were omitted to make this working document more concise. Profane, abusive and/or threatening language, and personally identifiable information have been redacted.

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