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Federal Autism Panel To Increase Focus On Services


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With an “overwhelming” volume of autism research being produced, a federal advisory panel says that significant strides are being made in understanding the disorder, but serious gaps persist.

In a report released this week, the Interagency Autism Coordinating Committee — a federal advisory panel comprised of government officials and members of the autism community — outlined progress made in the last two years. Specifically, the group highlighted new autism prevalence numbers, better information about co-occurring conditions like gastrointestinal issues and sleep problems as well as evidence that brain changes accompany behavioral improvements as some of the most remarkable advances.

“It is clear… that recent investments in ASD research and increasing coordination in the community are paying off,” said Thomas Insel, director of the National Institute of Mental Health and chair of the IACC, in a statement. “The volume of research is almost overwhelming, and new insights into areas such as brain circuitry, behavioral neuroscience, intervention approaches, genetics, immunology, environmental risk factors and services needs are creating opportunities to really change outcomes.”

However, the IACC acknowledged that it has not done enough to address autism services and indicated that the group is looking to increase its focus on that issue this year.

The report is the latest annual update to the IACC’s Strategic Plan for Autism Spectrum Disorders Research, which serves as a blueprint for federal priorities in addressing the developmental disorder. The panel focused on progress in seven areas — screening and diagnosis, the underlying biology of autism, risk factors, treatments and interventions, services, lifespan issues and surveillance and infrastructure.

During the two-year period, the IACC said that there were over 1,000 research papers published related to autism genetics or imaging. That’s more than three times the amount produced a decade prior.

Despite the progress noted, however, the panel indicated that much work remains. Far too little is known about autism in adults, the role that environmental factors play in development of the condition and what the impact will be of new criteria for autism in the forthcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, among other issues.

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Comments (8 Responses)

  1. Kiwismommy says:

    Find a cure and everything else is redundant! I know, then all the non-profits have no purpose, all the self-diagnosed and self-proclaimed autism advocates have no purpose, all the Autism organizations paying six figure incomes to staff have no reason to walk around oval tracks for eternity with never an advance to show for it, but we would get to return to intact families, healthy children, normal school budgets, and children that could grow up to live independently, have jobs, relationships, and not cost us billions in Social Security and Medicaire.

  2. fairlady68 says:

    Finally admitted: not enough known about autism in adults. All those kiddies do grow up after all.

  3. msw says:

    This committee is a joke. They have spent 10 years and still can’t find anything genetic. Hear this, autism is not genetic! We know mercury causes autism and we know chelation helps. The cover up continues, if we eliminate mercury from all vaccines, including the flu vaccine we would see autism and other neuro developmental disorders that affect 1 in every 6 children disappear. Oops, than we would have the proof! How can people sleep at night that know the truth and how sick the children are and do nothing?

  4. patm says:

    There are many adults with autism. I work with them! They are served by agencies for the intellectually and physically disabled, receive Social Security and Medicaid, and age out in most of the education programs at 21 although they really could use education even later than that to develop some more life skills and coping skills now that we know the brain doesn’t fully develop till age 25 or so. The ones I work with haven’t grown out of it, they are stuck living with a broken brain, and their families and society need to protect them, often from themselves, teach them as much as we can so they can have the best life they are able, and be patient with them.

  5. Tacitus says:

    It would be nice if this explosion in “research” were accompanied by maintenance of the same standards that such research is usually subjected to. Studies involving as few as a single person have been reported by this very website.

    I would like to see a new focus on “services.” Perhaps research on real education can be squeezed into there alongside the inevitable concessions made to the ABA-lobby.

  6. Val Stilwell, MSCS says:

    Our annual costs for ASD are around $126-$137 Billion- and in 10 years that number is scheduled to swell to $200-$400 billion! We have 500,000 youth with ASD transitioning out of school in that time. Most of the cost incurred is focused on adult services, are non medical and spent supporting adults with autism who can no longer live at home but need some sort of support structure. That being said, an example of societal impact translates to a mid size city can saving $4500 annually per person by training people with cognitive disabilities how to use public transportation.

    Following that, and highly unrecognized, is the notion that assistive technology can become a strong support tool for transition to adulthood by promoting independent living skills, self-determination, and even good work habits. Think of video modeling as guides that can be used and reused as many times as one may need – in the home, at school, and at work. This technology is not brand new but incorporating them into an individual’s learning system is. Our public school systems are swamped and undersupported for this critical need. Federal funding dollars should be all over the researchers in this field… for it will truly cost us in the long run if we don’t. And… our jails with bulge even more.

    Where can AT be quickly integrated for immediate levels of success? Start with personal organization/scheduling skills as early as possible – little to some is better than none.. and the more organized and individual is, the better. The foundation for any successful adult let alone an individual with cognitive disabilities is the ability to know how their day unfolds ahead of time with prompts and reminders to do the things on their schedule. This can be done even for those with little to no reading skills using pictures.

    We must embrace those who are leaders in this category of research and development, insist that this skill be incorporated early in an individual’s schooling. Think about it.. if an individual with cognitive disabilities can transition from school knowing and reminded when to take their garbage out, catch a bus, how to cook breakfast, take their medicines, and even socialize at a birthday party, then we’ve got possibilities that an individual can become more of a successful adult with greater degrees of independence which translates to lower costs for communities and more opportunities for those who need them most.

  7. ALMS says:

    To MSW: i agree with you 100% and i myself am a speech language pathologist. I myself have a son who is not on the spectrum but rides the fence. I myself take him to a holistic practicioner who does chelation, cranial sacral, acupuncture, etc etc. and have seen the difference it makes. We are creating bodies and brains that are a mess….this is our own societal doing. It makes it hard to do therapy when what you really want to say is “change your lifestyle and seek alternative health strategies”.

  8. TurboQueenofEvrythnginIL says:

    Thank you Scoop for serving special populations!

    Dear IACC, Thank you for recognizing the need to increase focus on adult services!!!

    From my perch, there is a radical need for services and intervention including provider training for transitioning adults and twenty-something’s. Loss of skills, learned helplessness, and severe behavior especially self-injurious is the result of programs that receive these individuals without efficient training and proper preparedness. I believe the problems are systemic and particularly detrimental to persons on the ASD spectrum (and their families) who are tragically so very vulnerable as they transition into adulthood and unchartered territories. Please also plan to address the problem of retention of trained personnel and burnout. This is me being brief…feel free to contact me, IACC.

    Sadly, I can describe this as a redundant occurrence for many individuals on the ASD spectrum that have ALWAYS been aged out of programs before an adequate level of expert knowledge had been obtained and implemented. Seriously, we can do better than this, and WE MUST UNITE IN RESPECT FOR ALL!!!!

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