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Summary of RFI Responses: Treatment
Need for Evidence Based Practices:
- Promising new interventions are not yet research based, making it difficult to find insurance coverage and agencies willing to help offset the cost. This disorder creates an immense emotional and financial strain on the families intensified by the lack of coverage of multiple promising new interventions. In addition, parents need to know if the treatments they chose are effective, so as to not waste valuable time on ineffective treatments.
- The question must be considered is it useful to spend large amounts of limited resources to study individual approaches to treatment (e.g., chelation, diet, hyperbaric, vitamins, etc.). These approaches seem almost infinite in number. How do you prioritize and pick the ones to study? There should be an increased focus on EBP via meta-analysis studies.
- Do research on the validity of many interventions and tools that have been purported to be useful in autism but have not had the benefit rigorous scientific evaluation. Even those programs which have been accepted as appropriate interventions have not had the benefit of publication in peer review journals. This paucity of evidence based treatment allows for very the few treatments which have minimal scientific evaluation to become a higher standard, determining treatments and costs as well as receiving coverage from health benefits organizations and endorsement from states and schools.
- Development of standards of care, based on best evidence, relating to typical evaluation, evaluation in the context of specific symptoms and phenotypic characteristics, methods of treatment (currently including mainly psychotropic medications), and management of co-existing conditions
- Development and testing of clinical practice tools to assist implementation of standards of care (including electronic medical record enhancements).
- Develop and disseminate a data management tool that can be shared with clinicians in order to collect and correlate phenotype information with treatment and outcome information. This would provide potential for pooling large amounts of data and may help determine which treatments are effective in which clinical subtypes.
- Need RCTs on the various "packaged" treatments that are out there comparing them to treatment as usual and to each others in order to answer the question of what treatments work best. Also need further work into what are the "active ingredients" in treatments that are efficacious. Included in this is what ingredients are most effective for which populations/subgroups of people with ASD.
- High priority should be given to well-controlled, objective evaluations of the efficacy of several interventions that are widely used and promoted, but for which there is limited scientific evidence. Ideally, those evaluations should be conducted by investigators other than the principal developers and promoters of the interventions.
- It is also important to do research on many interventions which may or may not have any benefit in autism but have become part of the subculture of Hope because there is little to be offered by the scientific community. Just as secretin had been evaluated in rigorous scientific studies and shown not to be effective, there are many other such treatments which are used with children with autism. These also need to be either proven or disproven in randomized clinical trials.
- Compare various treatment modalities "head to head" with similar groups, so that "best practices" can be tested, evaluated, and recommended with real understanding of various options.
- Conduct studies on effectiveness among meaningful subgroups, recognizing that certain interventions may work among some but not others and that complex, combined interventions and not single interventions may work best.
- It is critical that the research community stop going down the same old road and start looking at some techniques and treatments, even ones considered "fringe" or experimental, to either rule them out or find them viable.
- When is the optimum time for treatment to be initiated, and what should be its intensity?
- Consistent methods of measuring response to treatment beyond current psychobehavioral measures, including measures of functioning and quality of life
- More needs to be known about unproven bio-medical treatments for autism such as chelation therapy, hyperbaric oxygen therapy, vitamin therapy, etc. Parents are being misinformed and duped by quack medical practitioners.
- As effective treatments are still few and widely unavailable, investigation of treatments this is perhaps the most important target of research. This would include: novel treatment claims; review of current accepted treatments and targeting of those most likely to benefit and be cost effective; development of new treatments based on known and/or suspected genetic or phenotypic differences; longitudinal comparison of treatments, including center-based intensive behavioral treatments and community-based intensive behavioral treatments.
- Existing research needs to be reviewed and as a result of such review, research based treatment standards acceptable to insurers and school systems (or courts) need to be established.
- Research efforts should focus away from case studies to quasi-controlled studies and longitudinal work. Currently, we claim that improvements are seen with almost every "treatment" available but with absolutely no basis for determining what would constitute success. ASD behaviors cycle. Studies need to be long term. Parental data needs to be triangulated with school and other observation. We need some consensus for determining when we will call our treatments a success. Resources are limited and valuable time passes. With each marginally effective treatment implemented, we've potentially lost more than we have gained.
- We have few empirically validates studies demonstrating the actual effectiveness of approaches to treating ASD, and no studies on the relative effectiveness of the approaches and methods. And, if these are effective, is there a way to identify which individual and which behaviors or features would be best treated or addresses by any one or more of these approaches or interventions?
- What types of synergistic effects might be achieved by combining various treatment modalities in differing quantities? (E.g., does ABA become more or less effective if sensory integration is also used?)
- What treatments address the core deficits of ASD versus the symptoms of ASD?
- Investigate the treatment of ASD in girls, since autism treatment stories tend to discuss boys. Girls and boys are physiologically different so it would stand to reason that treatment targeted specifically to girls or specifically to girls may yield better results.
- Discriminate between placebo effect and natural maturation vs. true effect of medical treatment of concomitant medical conditions in ASD.
- Enhance characterization of medical conditions by adding science that investigates recovery and significant improvements of individuals with a previous PDD diagnosis.
- Research effectiveness of psychiatric drugs prescribed for patients with ASD, including anti-depressants, mood stabilizers, hypertensives (catapres), and atypical antipsychotics. Which populations benefit from which medications? For example, which medications are appropriate for hyperactive verbal children with high IQs and behavioral problems vs. non-verbal children who engage in self-stimulating behavior?
- Are there medications that target sensory overstimulation or understimulation that can improve the amount or quality of information a person is receiving through their sensory system? E.g., if you rev up the system of a person with a sensory-seeking profile with a stimulant, will that calm down their sensory seeking behavior and make them more available for learning?
- What are the current trends in prescribing psychoactive medication in adults with ASD and what symptoms are being targeted? Are the prescriptions effective or excessive?
- Emphasize a drug treatment to improve social awareness in autistic individuals. We can't expect a person with autism to be always able to respond to any new situation just by assessing what has been taught to them. Somehow we need to help their brain chemistry work better so they'll be able to function socially without having to make huge conscious efforts
- Study cytokine inhibitors, calcium channel blockers, other agents that improve vasodilation, and antiviral, antibacterial, and antifungal agents.
- Study subgroup response to medications. Currently, little is known about the effects of various medications (and other treatments) prescribed to specific symptoms. Yet, similar symptoms may have vastly different causes which are not immediately evident. Since many medications may actually have adverse effects and actually exacerbate problems, this is critical. A considerable variation in the dosage required is also known to exist, with individuals on the autism spectrum often needing considerably less or more than the standard dosages for the general population. Here, a great deal may be learned from current research in depression and ADD/ADHD.
- What are the long-term effects and safety of psychoactive medications -- especially Risperdal --in persons with ASD?
- Do more research on finding what medications work best to help reduce the OCD, aggressive and self-injurious behaviors displayed in children with autism.
- Do larger drug trials of medications that in theory may increase the cognitive abilities of ASD children (specifically Aricept, Testosterone, and Oxytocin).
- Investigate the effects of common medications used in ASD (ADHD medication, neuroleptics, antipsychotics, anxiolytics, stimulants, etc.) in the well-being of autistic people of all ages.
- ASD kids tend to be more sensitive to the dosing of dopaminergic meds. Stimulants are very effective but the therapeutic window is much smaller then in typical ADHD kids. Likewise, the partial agonist/antagonist qualities of aripiprazole (Abilify) seem to be better tolerated then risperidone (Risperdal). What is the strength of evidence for the use of centrally acting alpha agonists?
- Investigate the best procedure to follow if toxic elements in abnormal concentrations are demonstrated to be present; the importance of dietary, antifungal, antibacterial, and GI/ nutritional support treatment (combined) in the well-being of autistic children when proper combination testing demonstrates a need; the importance of antiviral treatment when testing demonstrates concomitant medical problems with viruses (herpes, RNA viruses, etc).
- Look at the highest-rated treatments on ARI, such as chelation and antifungals.
- Investigate the effectiveness of hyperbaric oxygen therapy on patients with autism, with respect to both cognitive and physical impairments.
- Can some definitive research disprove some of the bigger alternative treatments like chelation or special diets like gluten-free, casein-free? I would like to see proof one way or another that is reliable/without self-interest of some sort.
- Evaluate the usefulness of specific "biomedical" treatments, including chelation, special diets, and supplements, for various subgroups of autistic individuals.
- Study the use of the combination of non-marine DHA, methionine, B-12, and folic acid in pregnancy to prevent autism spectrum disorders. This is a real suggestion going around the internet.
- Do research on hyperbaric therapy, sacral-cranial massage, and other therapies falling under the DAN protocol.
- Determine which chelation chemicals/drugs do/don't remove metals from the brain and how important removal of metals from the brain is to reducing symptoms.
- There have been a few small studies suggesting that the gluten-free casein-free diet has an effect on IQ; my interpretation of this study is that 8 children should not represent the entire population of autism.
- Would Lactobacillus casei Shirota (LcS) improve gut function in children with autism?
- Investigate diet change (GFCF diet vs. organic and the effects on behaviors, socialization, communication).
- Investigate dietary supplements -- minerals, vitamins, omega-3s, DMG, glutathione, zinc, zeolite.
- Test efficacy of intravenous calcium EDTA, monitoring for excretions and evaluating symptoms.
- Evaluate efficacy of trichuris suis ova in alleviating gastrointestinal symptoms in ASD.
- Omega-3 fatty acids, vitamin B6, methylfolate, and tetrahydobiopterin, among other metabolic treatments, should be evaluated in a combination regiment rather than as individual agents. Evaluation via double-blinded, controlled clinical trials should remain the goal, but there should also be preliminary efficacy studies with less stringent criteria to make preliminary evaluations.
- It's widely known, from anecdotal reports and from a handful of studies that the amount and timing of sleep in children with autism is abnormal, yet hardly anyone seems to see this as the very significant clinical problem that it is.
- What are the optimum treatment protocols for individuals with autism spectrum disorders who experience significant difficulty sleeping?
- Research the effectiveness of behavior therapy in higher functioning children. For what ages and severity of symptoms are one-on-one applied behavioral analysis programs most beneficial, and when are inclusion and interaction with typical peers more beneficial?
- Peer-review controlled studies, and ideally double-blind controlled studies, are needed on ABA effectiveness. How many hours of ABA are required, and what ABA methodologies are effective in what circumstances.
- There is a critical need for research that thoroughly documents how ABA should be done in great detail and then develops ISO-9000 compliant procedures for the implementation of such a program with enough safeguards to ensure every child gets the right quantity and quality of ABA therapy.
- Study inappropriate Behavior Reduction (including, tantrums hair pulling, aggression, property destruction); functional assessment and analysis; increasing appropriate behavior (including self help); social interaction; academics such as reading and math; communication including vocal, sign language and other augmentative devices, and verbal behavior (directly teaching functional communication to individuals with no formal mode).
- Investigate the potential side effects of common autism treatments, most notably Applied Behavioral Analysis (ABA). Anecdotally, ABA has been suggested to cause serious problems in some children, such as perfectionism, rebellion, excessive compliance and anxiety disorders. It would be interesting to do a double-blind randomized study of ABA as opposed to other treatments or no treatment and compare average cortisol levels, heart rate, and other biological markers of stress in the children.
- For behavior-change treatments such as DIR/Floor Time and ABA, examining treatment fidelity in average treatment settings would be very helpful. To what extent does agency or private practitioner use of ABA use interventions in the same ways that researchers do?
- Do longitudinal comparison of treatments, including center-based intensive behavioral treatments and community-based intensive behavioral treatments.
- ABA and discrete trials therapies need to be compared to the more naturalistic, relationship-based therapies like RDI (relationship development intervention) and Floor Time.
- Have any large-scale studies on RDI been undertaken to study effectiveness? How does it compare to ABA in terms of effectiveness?
- What are the outcomes for children who receive sensory integration versus standard OT or no OT?
- Does occupational therapy help children with ASD's who often also have sensory processing issues?
- I think that the field of music therapy needs a closer look; since all the studies I've seen have primarily shown positive benefits with this treatment.
- Study the effects of sensory input on these children and how desensitizing the sensory system plays a role in the autonomic nervous systems "fight or flight."
- Support research into affect-based and sensory/motor/regulatory-based treatment approaches, and examine both differential effectiveness and sub-populations which can benefit from certain approaches.
- When considering undertaking research into a variety of modalities appropriately prescribed for children with ASD and associated disorders, I respectfully submit that chiropractic be included.
- Does modulation of hyper acute vision/hearing attenuate autisms' behavior traits?
- There needs to be research and study into the use of ECT (electroconvulsive therapy), TCMS (transcranial magnetic stimulation), DBS (deep brain stimulation), VNS (vagal nerve stimulation and other similar electrical and/or magnetic devices in the treatment of behavioral symptoms associated with autism spectrum disorder including depression, OCD, aggression and self-injurious behaviors. The existing literature is fragmentary and it is possible that some doctors using these techniques are avoiding making their work known because of the potential public outcry as to the use of techniques like ECT on the disabled population.
- There is good evidence that all autism cases can be improved by the use of neurofeedback (EEG and HEG biofeedback). Neurofeedback has several drawbacks, particularly in autism cases. 1. It's expensive, ranging in cost from $75 to $200 per half hour session, and usually requiring up to 200 sessions. 2. Motivating an autistic child to concentrate is difficult at best, and motivation is a major key to success. 3. It is difficult to attach the sensors to the head of an autistic child and to keep them relatively steady in signal level.
- How many psychotherapists are working with children with autism (not just HFA or Asperger's)? Can the principles of psychotherapy be applied to children with Autism?
- Study yoga and meditation as the treatments of choice for this condition
- Study the potential of gold salts being successful in the treatment of autism by reversing the binding of toxic metals (mercury) to cells. It was successful in treating the first child ever diagnosed with autism back in the 1940s. Perhaps this is an old trick that needs to be considered for use again
- Study the effect of EMF shielding or EMF-free environments as part of the treatment for people with ASD.
- Look at parental behaviors and how they can be supported to optimize outcome for infants or children at high risk for ASDs, much like cross fostering studies in both animal and human (schizophrenia) models are showing, for instance, how differences in communicative function in families are associated with later phenotypic evidence thought disorder or DSM 295 type diagnosis in persons with apparent high genotypic risk for schizophrenia
- What constitutes an effective curriculum for training parents/family members of children with ASD-i.e., equipping family members to be effective teachers of their children?
- How can developmental psychology and parenting practices of neurotypical children be adapted to the parenting of children with autism?
- What models of advocacy training for parents are most effective, especially in working with schools to obtain an appropriate schools program and to coordinate efforts in the home?
What are the best ways to work with families (especially families under stress -- poverty, single parents, etc., to help them work effectively with their children with ASD. What training methods work best; what adult learning principles apply; what methods of delivery are most effective (e.g. in home consultation, workshops, DVD's, written materials); parent support groups); what level of intensity is needed (hours per week?)
- Communication methods for people with autism who cannot speak, or who have difficulty applying speech for meaningful communication, remain tainted by the flawed, poorly approached, and poorly studied method of Facilitated Communication. That this method is flawed and allows false communications from some people with autism at some times, though, doesn't mean that it mightn't have contained a grain of truth. Indeed, there are indications that FC and similar typing methods work for many people with autism, a significant number of whom have progressed to undeniably independent typing. What's going on, behaviorally and neurally, in the people for whom such methods work? What elements of the methods are working, and what elements ought to be discarded?
- Developments in virtual reality and other computing technologies have great potential to translate the perceptual world into a pace and a number of channels that a person with autism is able to manage, and likewise to translate the communicative attempts of the person with autism into a language that the rest of us can notice and understand. The development of innovative technologies to support communication in people with autism should be a major initiative.
- Focus on interventions that focus heavily on areas of improving receptive and expressive language skills.
- There is a critical need for a path of progression needed for ASD kids to understand, process, and output language in a way that is effectiveness for them.
- How can we facilitate meaningful communication? Can the effects be minimized or reversed through therapy, diet, medication, a combination?
- Typical children learn an abstract concept like "tree" before they learn specifics like names of different types of trees. Would behavioral techniques applied to a developmental progression specifically designed for visual thinkers yield better results?
- What are the best strategies to teach nonverbal children with ASD to read?
- Communication technologies are vital for nonverbal autistics, as helping an autistic gain skill in alternative communication can give him/her the ability to advocate for themselves, and this in invaluable. Speech therapy is good for those who find use of it, such as I do, but some others expend so much energy when trying to use speech, that it has more downsides than benefits on mental health, and for such a person, an alternative communication method would be far better for the individual's health and needs.
- Any electronic/electromechanical devices that will aid ASD students in achieving a greater degree of independence-e.g. medication reminder/dispensers and electronic toileting assist devices.
- Identify/create assistive technology solutions, including open source software, that is accessible and affordable for individuals with ASD and their families to enhance communication, job skills, self-management skills, and social interaction.
- Limited funding is hindering the development of new AT solutions and studies to evaluate their effectiveness. Examples of AT solutions are video modeling, virtual peers and immersive virtual environments.
- Focus federal research on Augmentative and Assistive Communication (AAC) technology, positive behavioral supports, restraint reduction, adult supports, educational inclusion, REAL employment and independent living services and any and all possibilities for tangible improvements in our lives. If one-tenth of the attention and funding now focused on finding "cures" was put towards all of the promising possibilities in assistive communication technology, many people on the autism spectrum today viewed as "low-functioning" would be communicating successfully today.
- It is imperative that there be research on effective interventions for children under the age of three. With the American Academy of Pediatrics emphasis on screening at 18 and 24 months, we anticipate that many more toddlers will be identified yet there is precious little research on effective early intervention techniques for children in this age group. Most recommendations are based on research with older children. It's quite frightening to watch some of these intensities and methods being applied to such young children with no real evidence of their effectiveness
- Many research studies look at how large a number of intervention hours a child needs to make progress, but have any looked at how few hours a child needs to make progress? Considering children aged 0-3, the typical push for extremely intensive programs is not always beneficial.
- Testing, development, and implementation of improved strategies for early identification and initial treatment, especially in primary care settings
- What are minimal competencies/skills required for entry level personnel conducting hands-on treatment of children with autism?
- Evaluate the true efficacy of "early" versus "later" interventions of various types, so that parents can make intelligent decisions about appropriate treatments for very young children.
- There are numerous research questions to be answered related to instructional methods, intensity, frequency, developmental appropriateness and service delivery in natural settings for children under the age of three. Since a major goal for early intervention programs is to deliver quality, research-based, and fiscally responsible interventions to infants and toddlers, these programs are in need of quality, research-based, and fiscally responsible interventions that are designed specifically for infants and toddlers. The need for this information will only continue to grow as the average age of identification and diagnosis is lowered.
- More research on programs for very young children needs to be done as we are encouraging families to identify children earlier, but then we do not know what to offer them short of developmental speech or cognitive therapies which we recommend to any child with a developmental delay. Information and research on therapy and family training programs for these very young children is essential.
- The great majority of existing treatment research has been conducted in university or clinic settings under conditions that are carefully controlled. While necessary to ensure the validity of the findings, this results in the dismissal of findings by local school systems as impractical to implement in an inclusive public education. A line of research that specifically targets translation and application of clinic-based treatments to inclusive education settings is critical.
- Use science to investigate the effectiveness, or the outcomes, of programs currently in use for hundreds of thousands of public school students. Education is the "approved" treatment option for autism. We deserve to know which educational programs work and which ones do not work.
- I would like to see research funding being allocated to help develop successful inclusion programs.
- Analyze the best educational tools to support the strengths and to help with the weaknesses of autistic people. Require the inclusion in mainstreamed schools to be successful.
- What is the role of stereotypes about autism in the success of inclusion (in the case of other parents, the other children, school authorities)?
- How to educate non-autistic children and adults to prevent bullying and abuse and increase inclusion for autistic people. Too much focus is placed on preventing bullying and abuse by training autistic people in 'social skills', which (a) may not be sufficient for many autistics, and (b) places the onus on the victim rather than the perpetrator. For example, it's been found that describing the abnormal behavior of autism as uncontrollable and stating that autistic children need extra help learning did not have much effect on the child's attitudes towards an autistic child -- what does? As another example, when an obviously developmentally disabled adult is out in public with an assistant, how does the assistant's reaction to unusual or problematic behavior influence the attitudes of observers?
- What are the impacts of bullying, stress, anxiety, hyperactivity, and depression in school settings?
- Detect and develop of strengths and superior abilities in ASD. Study the potential application of these abilities in the different roles (jobs, education, society) to foster appreciation of autistic abilities in contributing to communities and society and to the well-being of the autistic person.
- More research in natural environments is needed. Children with autism can and do learn in group settings and do so without one-on-one instructional assistance. Too much emphasis on discrete trial programs and 1:1 instructional settings gives the impression to parents (and professionals) that success and achievement for students with ASD cannot and does not happen in the public school arena.
- There is a critical need for assessing attention skills in ASD kids. Techniques that really work need to be broadcast to help countless children and teachers out there struggling with this issue everyday. There are vast opportunity for improved outcomes if better research existed here.
- Study how long it takes to teach a skill and what it takes to teach that skill. The study could choose a set of skills at varying levels. The study should include analysis of the time (learning opportunities), teaching methods (how are the opportunities structured or presented), and environments (in a classroom with other students or pull out) across students at various levels. Start with the simply imitation skills and joint attention skills with the youngest ASD students to create a baseline and a strategic platform for studying higher level skills.
- Conduct more studies that will help schools follow treatments -- such as ABA and TEACH -- to provide guidance on how many hours to provide and how to provide treatments.
- Do children with ASD do better being educated primarily in inclusive settings or classrooms that have environments and methods designed specifically for ASD?
- Do social competence research, including the role of joint attention in social skills intervention, effective parameters of video modeling, effective models of peer training, effective methods of instruction to promote social survival, etc.
Update the National Research Council's 2001 Educating Children with Autism report so that it is more current and therefore maintains full credibility. Expand the scope of that report so that it includes information for older children and youth (ages 9 through adulthood). Dedicate some portion of research funding to disseminating this report in practitioner-friendly, teacher-friendly and family-friendly format to ensure some chance of it being applied in practice
- Evaluate the success of each social skills training curriculum in each state and in each county of each state, stratifying the evaluations by elementary, middle, and high school programs. (Highlight establishing separation in research of Aspergers/HFA vs. other ASD subtypes). Evaluate which states/counties received the best results so that this social skills training curriculum can be adopted across entire country as a requirement in IEP's for ASD public school students. Include a dollar value to adopt the most effective ASD social skills curriculum so advocates can use this figure to advocate for the needs of these children.
- Research about how to create and maintain daycare and afterschool programs for autistic children is needed. How can staff members be trained and supervised and supported (to avoid burn-out and a high turnover rate of workers)? How can such programs be funded for parents with limited financial resources?
- Research is needed into how schools and centers for autistic persons can train staff in methods of "crisis management" that emphasize non-violent techniques.
- Look at environmental influences on student's ability to attend and learn. A study could be designed which looked at different physical construction techniques (lighting, sound absorption, visual stimulation, etc.) in particular classrooms, and track which types of environments resulted in better attention of students to tasks and better retention of taught material.
- Look further into the beneficial aspects of art and music, both of which have been stripped from our public school systems over the last few decades. Children who do not think or communicate with their left brains do not fit in the public school system. Because of the high focus on test scores and No Child Left Behind, children with ADHD, Asperger's syndrome, and Autism Spectrum Disorders are being left WAY behind.
- I would love to see a study of a child from Kindergarten through 8th grade in a similar program with trained peers who move up with him to the next grade. If different children are selected each year, that would be up to 18 children in the school environment able to interact with the child. If the child's emotional well-being is met, could this translate to an acceleration of peer interactions, social skills and academic advances? Would such a program help alleviate the burden on the teacher who must deal with daily behavior issues and/or possibly downplay the need for full day one-on-one aides with the child?
- If I had cancer, I would not turn to a public school for care. I would seek out a doctor and expect proven treatment that would be effective for my condition. Why should autism be any different?
Interventions and Issues for Older Individuals with ASD
- High numbers of "high functioning" ASD students will soon be preparing to go to college, and there is a lack of information available regarding what their particular needs will be in college. There are a small number of colleges who in anticipation of this are developing specialized programs for students with ASD. Their needs are not as "simple" (not meant in any way to be minimizing) as the needs of students with other types of learning disabilities, and in many cases they will require more daily, hands-on supervision to be able to succeed in college. Most of these students won't have a problem getting into college, but whether they can get out successfully is another question. The more we can identify what they will need and what types of programs will help them be successful, the better. It would also be interesting to do a study on the upcoming generation of high-functioning students with ASD and how they fare in college and beyond compared to the previous generation of students with ASD who did not have the benefit of early intervention (if at all possible). This would give us insight into the effectiveness of early and later intervention programs, and possibly also highlight other types of interventions that might be needed to help kids develop skills that would mean less hands-on supervision in college.
- A very high percentage of autism studies are performed solely with very young participants. However there are highly effective interventions, such as cognitive and self-management strategies, which are only appropriate for teens and adults.
- Both medical and behavioral interventions that may be successful with young children do not seem to not work with older adolescents and young adults who have become more rigid, depressed, and hopeless and who have not learned how to deal effectively with ASD.
- An area of concern for our family is the quality of long-term care, especially acute care that may be needed due to aggression, limited verbal and safety skills, and medical issues. My son attacked me during a trip as a result of intensive pain from GI issues. This resulted in a call to emergency services and tranquilizers for a ten year old. Research into pain related issues and aggression and the acute care needed to care for both is critical.
- What are the factors within the educational transition of youth with autism spectrum disorders (ASD) ages 16-21 contributing to successful employment and community integration of individuals with ASD?
- Study successful inclusion in several jobs of autistic adults. Importance of the environment and capacitation/information about ASD and the individual attitudes in the final situation. Role/adequacy of a mentoring system.
- Longitudinal studies are needed to develop a clear picture of the trajectory of the disorder and to evaluate the ultimate outcomes for individuals with ASD. Such research could inform the development of systems of care and support for people with ASD across the lifespan.
- The entire service system for adults is in need of systematic review, documentation, and improvement. These systems include residential, vocational, recreational, and therapeutic (medical, behavioral, etc.) services. A review of these systems and their funding streams could lead to increased efficiency as we all prepare to address the needs of the growing and aging population of individuals diagnosed with autism spectrum disorders.
- Research should be devoted to how to transition teens with autism from being in the controlled environment of home and school to the independent environment of adulthood. How can these youth be prepared for the workforce? Are there types of minimally assisted living environments that can help them transition to independence?
- Adults with autism are in desperate need of help. There are programs to help them up until they become adults, but then they just drop off the face of the earth, so to speak.
- Which treatments lead to quality of life outcomes such as independent living, jobs, friendships, marriage and mental health?
- The assistance needs of autistic adults should be studied, particularly higher functioning autistic adults.
- There needs to be some longitudinal studies on people with autism extending past the age of 25. There is virtually no information on autistic adults; believe me, I've looked, and speaking as an autistic adult, I find this very perturbing. Perhaps a study showing how many autistic adults have gone to college/graduated would be appropriate in this case. Most of the current studies say that it is very rare, but I have known many people on the spectrum who have disproved this idea.
- An area of interest for me is the developing sub-culture of high-functioning autistics (including Asperger's Syndrome and various PDD-NOS's). I think that just like the deaf culture, this is also a valid culture that needs acceptance and recognition among neurotypicals (NTs).
- Although most attention focuses on children with autism spectrum conditions, there are a huge number of adults with autism spectrum conditions. Many of these are undiagnosed, in the case of Asperger syndrome, or misdiagnosed as mentally retarded or schizophrenic. Many of their parents are dead or will soon die, leaving them without vigorous advocates. Who will speak for these people? What difficulties will they face, medically and socially, as they enter old age?
- An investigation should be done of the prevalence of undiagnosed ASDs amongst older age groups. It would appear, to me, to be no different from that currently reported among children. Also, an investigation of the causative factors that lead older people with undiagnosed ASDs to deteriorate in social functionality. Research into means whereby an older aspie can be persuaded to (at least occasionally) re-don the mask of neurotypicality.
- How to use autistic traits instead of trying to reduce them? The best example is perseverative interests-Temple Grandin has made a living out of using her perseverative interest in animal behavior and livestock equipment, and all the famous undiagnosed people who've been suggested to be autistic, such as Einstein, all pursued careers in an area of intense interest to them. Other autistics traits could potentially also be used to the person's advantage.
- There is a large undiagnosed adult population, in the 35-70 age range, who should have been diagnosed as children. Is there any way to initiate a nationwide outreach and awareness program for these people?
- Many adults with an ASD are successful at living independently when they have appropriate supports. What "appropriate supports" consist of should be an area of research and information dispersal.
- What are the optimum treatment protocols for adults with ASD who have been victims of abuse or neglect?
- Research should be aimed at ameliorating and bringing about enhanced outcomes for adults with autism who have missed out on the advances in autism in the last decade, who have missed out on early intervention and who cannot benefit from preventive strategies.
- What are the factors associated with successful employment, in the community, for young adults with autism spectrum disorders, ages 21-35?
- We have also been combing the literature and community for good vocational assessment tools to be used with individuals with autism and have been told by many there really aren't any. This is an area that needs to be developed.
- What does it take to have success in habilitating a person with ASD? What is success? Do expectations, assumptions, and energies match what it takes to achieve success with a person who has ASD?
- What health problems do adults with ASD acquire as they age?
- What behavioral or non-pharmacologic strategies are most effective for managing socially inappropriate behavior in adults with ASD?
- Identify health care maintenance strategies with evidence documenting their effectiveness at ensuring proper dental and medical care for individuals with autism, particularly those who need supports for communication regarding their health care needs.
- I would like to see research into the beneficial aspects of ASDs. Some of the rare talents exhibited by those on the spectrum would give great insight into the working of the human brain.
- There should be more study into whether specific identified deficits in autistic people, such as social skill deficits, are truly deficits or are instead differences. For example, regarding social skills, anecdotal reports suggest that autistic individuals are much better at relating to other autistic people and may be "speaking another language" rather than truly deficient in social skills
- Typically, ASD children are "loners." My daughter is into all forms of computerized games, education, etc. She would struggle working in a public facility. However, sit her down at a computer and watch her excel. What resources does she have as she grows older to assist her in her college life?
- ASD children who have superior intelligence have the intelligence to figure out how to do "adult" or normal things, but not the common sense to know she should not do them. There seems to be limited information on the challenges of these children since they are so successful in school. However, they are not as successful in everyday life.
- Social development groups are critical to Aspie kids. The best ones either talk about specific experiences and "correct" situational behavior (Aspies learn these by rote, not intuition) or involve people in a project they build together where social skills can be practiced "behind the scenes".
- We are most interested in those treatments that best address what we consider to be the core deficits of autism, namely social impairment and lack of ability to think dynamically and flexibly. In our opinion, while the most popular treatment for autism, applied behavior analysis, is effective in imparting behavioral skills to autistic children, it may have shortcomings in effectively addressing these core deficits. There is a relatively new intervention, Relationship Development Intervention that claims to address these deficits; therefore, we would like more research conducted into this type of intervention and others like it. Unfortunately, the percentage of autistic people who go on to live what most of us consider to be meaningful lives -- i.e., establishing and maintaining friendships, holding meaningful jobs, and getting married -- is dismally low. It is of critical importance that therapies be developed that can assist them in achieving these goals.
- Study: (1) The well-being (physical and psychological) of autistic people in environments such as institutions/residences vs. home-based environment. (2) The requirements to home-based living, including proper medical treatment of physical and psychological conditions-(independent; independent with support, non-independent) to be successful in terms of happiness and well being of autistic people. (3) Impact of the attitude of the family in non-independent life. (4) Alternatives to institutionalization: requirements and implementation. (5) Opinion of the parents/siblings of autistic people. (6) Opinion of autistic teens/adults.
- How do autistic children/teens/adults see inclusion, society, research on their condition, and the actions of the medical profession related to ASD and family?
- Study the impact of a young child's ASD on the development of a positive attachment system between that child and his/her parents. Also, compile guidelines for educators and other clinicians about how to assist parents in establishing social and emotional ties with their disabled youngster.
- What are the long-term employment and community integration outcomes of children with ASD when coming from inclusive vs. segregated educational environments?
- Assess group dynamics and group cohesiveness in socialization groups for children with Autism. This should go beyond turn-taking and sharing. When do peers in a group become friends? What is the emotional result of never having friends for neurotypical children and how does this relate to children with autism?
- Is the anxiety to be treated as a part of the autism diagnosis or separately? While my son is doing extremely well in most environments, his level of anxiety with novel situations, foods, even television is extremely high.
- Isolation and loneliness are risk factors for chronic depression and substance abuse. Determine strategies to support and enable individuals with ASD to experience satisfying interpersonal relationships with co-workers, friends, and life partners.
- What are the social and emotional processing impairments that underlie the social deficits in ASD's; and once identified, can these deficits be effectively remediated?
Impact on Family and Caregivers
- What combination of information, planning and supports leads to successful counseling outcomes for families immediately after they receive their child's diagnosis of autism?
- Policy work directed at acceptability of residential during certain periods of a child or adult's life. The policy winds direct schools and Medicaid institutions away from short term (2-6 years) residential when in fact this may be the best approach to social and emotional growth, and brain growth, during a period of a child or adult's life.
- Also important is to address the new issues of families who have multiple members (parents, children) with autism spectrum disorders. How do such families manage?
- What resources are most effective in helping families -- respite workers, cash allocations, other?
- We need to better understand how having a child with autism impacts the family, including parents, siblings, and other family caregivers. Families bear the brunt of care and cost with respect to their family member with ASD. While this research is emerging, we know very little of the impact on families of color.
- The family of the autistic person needs to be studied: accommodation to the challenges of individual ASD, dynamics of education, shared time, parental and sibling's psychological and physical health, development of emotional connection, and understanding/acceptation of the condition. Strategies should be studied to deal (emotionally, medically, psychologically) with aggression /ADHD/anxiety/stress/seizures-epilepsy/other potentially life-threatening medical problems such as asthma (when present as concomitant to the ASD diagnosis) at a familial level.
- Assess the opinions of the families of autistic children/teens/adults regarding their perception of the well-being of autistic children/teens/adults, behaviors and communication.
- Gather the views of autistic adults of their lives, their independence, their choices, their problems at all levels during development, their families, and how they see their options and needs at medical, social, parental, and political levels. These can be compared with the views of autism from parents and siblings of the autistic person (children/teens/adults). Study the harmonization of all family's children's needs when there is an autistic child (or several) in the family. Look at the importance of parental attitudes and the importance of demonstrations of love, acceptation, and affection
- What is being done to understand the frustrations, concerns, and barriers that parents face in trying to get just the basic services for their family member? What are the patterns of adjustment that parents and families of persons with ASD go through in their daily efforts to get services, find some stability in service delivery, and feel that they have done what is needed?
- Research should be done to help design a new approach that offers parents individual profiling, resources and support that will help them deal with the overwhelming emotional overload they are dealing with. Many of these parents are sleep deprived, grief stricken, frustrated, depressed, with compromised physical and mental health status. Although they are relieved to receive in-home training, they are ill-equipped to maintain a home-based program or even comply with simplified behavior plans. If parents are successful, it may be at a cost. Marriages, finances, siblings suffer.
- Study the ethics of who speaks/decides about medical treatment of any kind that affects the life and well being of non- verbal, non-communicating or very difficult to communicate autistic people.
- How often are individuals with ASD treated without their consent (though with the consent of their parents or guardians).
- Community-use patterns should be considered in establishing research priorities. IAN data show which treatments garner the largest investment of time, energy, and money from families. While it is clear that research resources will prevent most unproven therapies on this list from being evaluated in clinical trials, some of the more prevalent therapies may merit consideration.
- Experimentation with different strategies of organizing care, including distribution of responsibilities between primary and subspecialty care and organizing initial evaluation services, referral to initial treatment services, and followup
- On a national level, how many children and adults with ASD are on waiting lists for home- and community-based services and, based on current estimates, what is the number of individuals with autism spectrum disorders projected to require services as adults over the next 25 years?
- We are beginning to see an expansion of funding for services and research on autism treatment interventions. The impact these efforts will have on available funding resources by the federal/state government, and managed care, is showing an increase, and needs further study and data to illuminate the facts about this great concern.
- Determine the legitimacy of the institutions and people involved in administering advice and treatments for our children. We may be devastated by what is happening to our children and appear to be vulnerable with a "deer in headlights" look, but please help parents avoid those who prey on our misfortune and who are only interested in emptying our pockets.
- How can the small, successful programs that typically reside within university settings be scaled to meet the needs of the thousands of individuals who could benefit from the protocols? How can these evidence-based protocols be implemented in the real world where providers can offer the empirically-validated best practices in a manner that enables families to access the services?
- Finance longitudinal research on the financial benefits to society when people with autism receive appropriate treatments. For example, it may be difficult for some decision-makers to justify a treatment protocol for a child with autism that costs $250,000 annually. However, if it is successfully demonstrated that the child would likely be able to live in a less restrictive setting for the balance of his or her life as a direct result of the treatment, thus saving millions of dollars that would have been spent to house the person in an institution, then public or private revenue sources could be created to pay for the treatment.
- Can anyone do research into why insurance companies won't pay for most of the treatments or evaluations the ASD kids like our need? And why the federal or state government won't step forward with dedicated funding to help these kids but instead pushes off responsibility without specific funding to local districts, which then pits parents against their special ed director, who is compelled to keep budget costs down, and pits already hurting ASD parents against other mainstream parents who want the budget money to go to their mainstream kids and resent any extra money divvied to ASD children?
- Document the intervention strategies and services currently funded by states to address the needs of individuals with ASD that meet the following characteristics (for example): (a) measure and record data documenting change with respect to individual outcomes related to personal, social, and employment goals, (b) identify and track individual health status and changes, (c) provide positive behavioral intervention and support in nonrestrictive community settings, (d) furnish services in a cost-effective manner, and (e) document reductions in the need for assistance over time.
- Do dissemination studies to get effective treatments into the hands of frontline providers and those who serve the largest numbers of people. Need good science and RCTs exploring the alternative medicine things that parents are using a lot of but currently have no evidence for or against them.
- Using a multi-state analysis, what are the individual outcomes and family stress and satisfaction rates for children served by Medicaid home- and community- based service (HCBS) waivers vs. those not receiving HCBS services? What are the individual outcomes and satisfaction rates and family stress and satisfaction rates for children and adults receiving services through self-directed HCBS service systems vs traditional provider directed HCBS systems? What are the acute health and behavioral health outcomes of individuals with autism spectrum disorders based on available health insurance coverage for speech therapy, occupational therapy, and intensive behavioral interventions?
Training of Providers:
- Based on successful rates of employment and community integration, what are the minimum and optimum training requirements for direct care staff serving adults with autism spectrum disorders in community-based service systems?
- Research cost-effective models of providing training and technical assistance to schools and community providers so they are using evidence-based and promising practices in educating and supporting people with ASD.
- We need research about how to train, fund, and support staff, job coaches, and therapists who will live with those autistic adults who require such supervision, and who will assist them at work and in their leisure time.
- Future research should also include advancing our knowledge base on how to best disseminate crisis prevention and training models to maximize client and staff safety as well as to minimize the potential for harm and abuse
- What kind of services will be provided to teenagers with autism transitioning into adulthood? What kind of support from non-pediatric doctors will they be able to receive? Will these doctors be trained with some kind of ASD information to handle these individuals? What kind of support services are given to local law enforcement to handle these individuals?
- What is the training of teachers and parents to face the challenges?
- How do service providers act and react to having a referral of a person with ASD? What are the expectations of providers in regard to a person with ASD and what do providers plan to do to help the person with ASD?
- Research should address physical, emotional, verbal, sexual, financial, and medical abuse in schools and by county and state staff and professionals.
Cost of Treatment:
- Analyze the long-term costs of not treating people with ASD in a comprehensive manner.
- Improve overall Medicaid waiver and other mechanisms, along the lines of mental health parity. The parity bills in place, and the way they articulate state-to-state and with insurance, are woefully inadequate and are pushing people toward bankruptcy, as we were in 2005.
- Accurately project and forecast the cost of treatment, research, and most importantly, the cost of delaying or doing nothing.
- Financing clinical services, recognizing overlap between some educational and medical services and need for complex multidisciplinary evaluation and treatment.
- I urge scientists to conduct services research on disparities in care across class, ethnic, and national communities. Research is needed to determine disparities in care and access to services, including educational programs, speech therapy, and occupational therapy, among others.
- Treatment availability in various regions of the country should be analyzed. Currently access to effective treatment generally depends on your bank account and your zip code. Accessibility is crucial.
- How can research decrease the racial and ethnic disparities between the age of diagnosis and access to treatment?
- To what extent are different populations represented in the key publicly and privately funded treatment programs? For example, in my state, the state provides intensive therapy services through the Medicaid waiver program, yet minorities and low income children may be underrepresented in receiving this program. What are the treatment disparities and what are the barriers to receiving treatment?
- How well do treatment programs work for families from different cultural and SES communities? For example, does 24 hours of intensive therapy in the home work for all families, or is this more difficult for low income families?
- Does lack of bilingual workers hinder the effectiveness of the treatment? Many of these programs do not have therapists that speak Spanish or other languages.
- Does symptom expression of autism vary by culture? For example in cultures that emphasize greater social interaction, do children with ASD adopt social behaviors in a different way than other cultures, or are the problems exacerbated at least from the perspective of the parents?
- Overall, research should shift from a focus on "damage" towards a focus on "plasticity", or what can be corrected or modified to achieve recovery or gain of function.
- With all of the work you will do compiling your research, it will fall on deaf ears. The people who can choose to provide these services live in a culture where refusal of service is the norm. Most families cannot afford $7K a month for 3 years. Frankly, while we had a hard time affording it financially, we knew we couldn't afford to miss the opportunity to change our son's quality of life. We were lucky we had a nest egg to break. What do you think happens to the children whose parents can't afford to fight the good fight?
- Restoring public confidence is beyond the scope of the IACC. I have also noticed, to my surprise, that families will cling to anecdotal reports of success over scientific evaluations of failure. Yet, to borrow a football metaphor: the best defense is a strong offense. Rather than spend resources on attempting to disprove questionable therapies, I would recommend that the IACC devote its treatment research resources to running large-scale clinical trials on the most promising interventions that address the most prevalent symptoms of autism.
- I am going to make a plea to your agency on behalf of ASD research and integrative biomedicine. . . . Diet is so huge in most cases of autism. Our kids little bodies are either full of toxins or deficient in certain minerals or vitamins that are needed for normal function. Utilizing biomedicine in a completely non invasive and fairly cost-effective manner, I believe that we could do some amazing damage to autism and its hold on so many families.
a.I am a 35-year-old man with Aspergers Syndrome. I feel uniquely qualified to speak my mind regarding RFI NOT-MH-08-103. I believe that the best (and only) treatments should be therapy, training and a good deal of public acceptance. Unless there is a comorbid condition such as depression, I am against biomedical treatments and especially against things such as chelation! I do not believe that ASDs are caused by heavy metal poisoning, or poisoning of any sort. I am happy that my own diagnosis came as the result of a work place rehabiliation. Aside from a series of short visits to a specialist, I avoided the mental health industry. My doctor was of the mind that an ASD is not a mental illness. I am in agreement. His statement was that it was a style of brain, and not damage at all. Depression seems common,though I wonder if has more to do with alienation that a neurological origin. The impression I get from the Aspergers/High Functioning Autism group I joined supports this. Most want acceptance, not a cure. I believe that the autism spectrum comes from genetic expression caused by environmental factors in the womb. Five generations in my family show strong signs of Aspergers Syndrome. Two of those generations were born prior to infantile vaccinations. My great grandmother was born prior to 1900, for example.
- Although I have a gifted-level IQ and am considered high functioning, I am not capable of living independently without services because of problems related to executive functioning and sensory processing, such as poor sense of time, difficulty cleaning, unawareness of hunger, difficulty preparing meals, inconsistent abilities, etc. Note that with some self-care activities, I am capable of doing them independently but with much more effort than usual, making it impractical or unfeasible to do them consistently enough to meet my own needs, or else I can do them only if not in the state where I'm likely to need to do them (for example, hunger makes preparing meals more difficult for me, and the hungrier I am the worse it gets-and I lack the planning skills to pre-prepare meals unless prompted). I belong to a yahoo group discussing this issue
- My son has Asperger's Syndrome, epilepsy, and developmental learning delays. He reads and writes at a first grade level, but can understand much more. He understands many high level concepts but has problems memorizing. He also has speech problems that make him hard to understand. He also cannot communicate very well when he is overwhelmed by events around him. He does not snap buttons or tie shoes, he just can't get it. He is 13. He angers easily and takes time to calm down once he is upset. I think that research needs to be done on the best way to give kids like my son a future where he can be successful even though he has these disabilities.
- I can't pretend to understand why mindfulness-the core point of yoga and meditative practice-should have done so much to alleviate my symptoms and relieve my condition, but I assure you, it has.
- If intensity of services early on helps change a growing brain for the better, shouldn't every student with ASD be given these services and shouldn't these services be supported whole-heartedly by the public and government? Everything we do early makes a difference. And do not give up on the children who are older either. As with any older child or adult, learning is a slower process. Keep working to give these people intensity of services so that they can learn job skills, earn a paycheck, live in an assisted living kind of situation, and not live in institutions isolated from the public. They need access to family and friends just like any other human being. They should not be separated from family, nor should people just be let out onto the street without help, intervention, or support.
- What are we going to do now with the children, like my daughter, who have been left behind or left out? I live in a rural area with limited resources, and we are running out of time to intervene to the degree necessary to ensure that we have done all that we can for her. I refuse to try the latest fad drug, diet, or voodoo on my daughter. She is not a guinea pig, she is a living, beloved human being who deserves treatments that have the same or better volume of sound, scientific data behind them as treatments designed for heart disease, diabetes, cancer and the like. I also do not have the funds to try everything. I am too poor to send her to private, specialized schools. I make too much money to qualify for any state or county services. I am stuck in the middle class with most Americans, trying to do the best for my children.
- I have a 26 year old son who has severe autism and is developmentally delayed. The biggest problem that we face is that once he graduated from high school, the only place that was available for him to work was the sheltered workshop that is run by our county, where he can only earn a piece-meal pay, which is never over $20 a week. Money is tight in this state. Also the governor and others in charge are more interested in the newly diagnosed children. We have been trying to get him into a home for the last 3 years but there is no place for him to go. He has seizures which are getting worse and his temper flare ups aren't getting any better. What is the IACC going to do to help parents of autistic adults like me? My biggest fear is that when I die he will have no where to go. Is there anything you can do to help my family and others that are in the same situation?
- Please help parents access biomedical treatments (which are helping recover children). The doctors' visits cost $500, tests $1200, supplements monthly $200 (or so). Then you have ongoing testing to measure levels! Parents are mortgaging their homes. Grandparents are mortgaging their homes as well to help pay. We are bankrupting families.
- Are you aware of the problem of restraint and seclusion in the public school system of children with Autism, ASD and other disabilities? Restraint and seclusion have no therapeutic value, contribute to human suffering, and have frequently resulted in severe emotional and physical harm, and even death. What kind of future will our children have if they continue to suffer physical and mental abuse at the hands of people that are suppose to be helping them. Our goal is to educate other parents, change laws to protect our children and reduce and ultimately eliminate the use of restraint and seclusion in the public school system on children with disabilities and focus on positive behavior supports and communication.
- It is hard to read everywhere that celebrities and folks who can afford it get their children all the hours that are needed of the therapies when most of us have to rely on our school districts. If I could afford to give my son those hours, believe me I would, so why should my son suffer because his mom/parents aren't rich?
- What effect, if any, does television have on shaping autism or actually helping it. Through videos my children have actually been more motivated to learn certain aspects, such as language. But I wonder what effects the TV fps flicker have on their brain.
- It has been my personal experience that some counties refuse to provide long-term care, or access to any supportive services if the individual with ASD is an adult and has an IQ over 70. Do individuals labeled "high functioning" because of intelligence actually achieve independence, and success without any adult support systems available to them? I believe the only way to access treatment would be to allow the young adult to "fail" to the point of needing mental health treatment, and having to be hospitalized in severe crisis.
- Put an end to the wasteful and hurtful continuance of spending time and money on shamanist and dangerous fix-it treatments such as chelation therapy, as well as (what should be) long-since closed cases such as the vaccine theory. There are more pressing needs, such as those millions who are without care, without housing, employment, or the diagnosis that could so change their lives for the better. We know that the proponents of these environmental causation theories are a loud minority, but these lobbyists do such a disservice to the millions of diagnosed children, adults, as well as to their loving, and therefore vulnerable families.
- A medical diagnosis is a construction not only of its biological roots but also of its societal context. As we strive to prevent and to cure autism, we must take care to avoid "curing" those abnormalities in autism that are not, in fact, disorders but that rather are simply different ways of perceiving and interacting with the world-capacities which in some regards exceed normal human capacities. The study of autism presents a grave danger of such an over-inclusive "cure" since autism arises in the confluence of so many independent or largely independent genetic and environmental factors-factors which, if they occur independently or in small numbers, may very well contribute to the individual's fitness and to the genetic, phenotypic, and societal diversity of the human population. In my view, the best cure for autism will be one that preserves autistic cognitive superiorities but which affords people with autism the communicative skills to share the fruits of these special cognitive skills in a social world. I firmly believe that such a cure will be possible, and I look forward to input from social scientists, historians of medicine, medical ethicists, and others in the broad field of science and technology studies which will keep us on the right path. Such input and study should be actively and formally solicited.
- I think the subject of empathy needs to be discussed. Those who say that people with autism are non-empathetic because of their lack of reaction or flat affect are assuming that there has to be an overt action associated with emotion to make it valid. I disagree. I think people on the spectrum are very capable of empathy and other emotions, but are perhaps just not as good as displaying them to other people. Have the researchers ever asked people about this? Of all the people I've talked to on the spectrum, almost all have told me that they can identify what others are feeling and can feel sympathy for them; however, they just don't necessarily show it. I don't think that the lack of showing emotion/empathy is the same thing as NOT having it.
- It is common for those on the spectrum to have a strong sense of egalitarianism, justice, and fair play. The world would be a better place if that were more common. I feel that we have something to contribute.