The Interagency Autism Coordinating Committee is a group representing government agencies that research autism and some segments of the autism community. It was reenacted as a result of the Combating Autism Act. The main product, if you will, of the IACC is the Strategic Plan, which lays out a suggested framework for the U.S. government’s autism research activities.
The main section of the Plan is divided into seven sections, framed around questions. I think it unfortunate that the questions are voiced as though they are posed by a parent. Be that as it may, here are the sections/questions:
1. When Should I Be Concerned?
2. How Can I Understand What Is Happening?
3. What Caused This To Happen And Can This Be Prevented?
4. Which Treatments And Interventions Will Help?
5. Where Can I Turn For Services?
6. What Does The Future Hold?
7. What other Infrastructure and Surveillance Needs Must be Met?
It is my belief, and that of many others, that the most important section is number 6: what does the future hold? This section covers research into understanding autistic adults. This is an area that has been woefully neglected in my opinion.
The goals below have a projected total budget of over US$50 million. I’d like to see a lot more. I’d like to see it now. But this is a good step forward.
Short-Term Objectives
1. New objective
Launch at least two studies to assess and characterize variation in the quality of life for adults on the ASD spectrum as it relates to characteristics of the service delivery system (e.g., safety, integrated employment, post-secondary educational opportunities, community inclusion, self-determination, relationships, and access to health services and community-based services) and determine best practices by 2012. IACC Recommended Budget: $5,000,000 over 3 years.
2. New objective
Evaluate at least one model, at the state and local level, in which existing programs to assist people with disabilities (e.g., Social Security Administration, Rehabilitation Services Administration) meet the needs of transitioning youth and adults with ASD by 2013. IACC Recommended Budget: $5,000,000 over 3 years.
3. New objective
Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, track outcomes, with consideration of ethical issues (insurance, employment, stigma) by 2015. IACC Recommended Budget: $8,400,000 over 5 years.
4. New objective
Conduct at least one study to measure and improve the quality of life-long supports being delivered in community settings to adults across the spectrum with ASD through provision of specialized training for direct care staff, parents, and legal guardians, including assessment and development of ASD-specific training, if necessary, by 2015. IACC Recommended Budget: $7,500,000 over 5 years.Long-Term Objectives
1. New objective
Develop at least two individualized community-based interventions that improve quality of life or health outcomes for the spectrum of adults with ASD by 2015. IACC Recommended Budget: $12,900,000 over 5 years.
2. New objective
Conduct one study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015. IACC Recommended Budget: $5,000,000 over 5 years.
3. New objective
Conduct comparative effectiveness research that includes a cost-effectiveness component to examine community-based interventions, services and supports to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2018. IACC Recommended Budget: $6,000,000 over 5 years.
4. New objective
Conduct implementation research to test the results from comparative effectiveness research in real-world settings including a cost-effectiveness component to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2023. IACC Recommended Budget: $4,000,000 over 5 years.
Left Brain Right Brain 
It’s about TIME!!! I’ve been harping on the complete and utter lack of services for adults on the spectrum for seven years!! There is so much potential in those on the spectrum! So much talent, intelligence, and skill that is wasted because there is no one there willing to help us learn how to use those skills in a work setting.
Teach us how to get along in a work enviorment. What is and is not appropriate when talking to your employer or your fellow employees. Interview skills is also a big area that would need some work. How to do things such as budgetting, cooking, cleaning, managing a checkbook. We can do all of these things, but if no one is willing to help us learn in a way we can understand, we will continue to sit behind closed doors and rot away.
We could do so much for the world if only given the chance and the little boost up. But there is nothing! It’s about time they took notice of it because we needed these services YESTERDAY!!
Theo, I agree with must of what you say, except:
Why do you believe that people on the Autism spectrum should have to conform to some socially-abelist “norm” ?
That idea stands TOTALLY and COMPLETELY rejected by me.
I am not going to waste the precious amounts of the LESSER cererebral blood flow (and energy) I have that makes me an artistis Autistic savant on running around unproductively trying to socially “please” (feed the dopamine-receptor social addictions) the other non-Autistic neurotype.
The best and highest use of my Autistic savant abilities is to draw, paint, and write — maybe be a lawyer and judge someday if I can ever get fairness, equality, and Justice. It takes ALL (100 %) of my available cerebral LESSER blood flow to use my Autistic savant talents and abilities to the best and highest use.
WHY would anyone be so utterly IGNORANT and ABSURD in an economic disaster like we are seeing in the U.S. and much of the rest of the World, WASTING 40 % more efficient Autistic brains — and run our economies at 40 % LESS than PEAK efficiency (by hiring Autistics for our talents, not to give Morphine-like feed-the-dopmine-social pleasantries-addiction of the other 40 % LESS efficient brain type ?
That’s ECONOMIC Suicide ! Not to mention an insane idea !!!
So your statement below, I TOTALLY REJECT because I think the non-Autistics need to learn to get along with Autism people, not the other way around.
I do not have the neurology to “keep up with the Joneses” of full-tilt social schedules, crowds, and too much background sensory input. AS you suggest I should have to — that is, be forced to conform my neurology in a way that is physically impossible for my brain cerebral blood flow (and also one that will exacerbate brain damage) ?
I agree with everything you said but NOT the below statement, which I have excised from your post:
“Teach us how to get along in a work enviorment. What is and is not appropriate when talking to your employer or your fellow employees. Interview skills is also a big area that would need some work.”
I do not agree that Autism spectrum people should have to do in-person interviews, and therefore the social-requirement of “interview skills” discriminates against Autism. I think jobs need to be restructured to *Fit the Autistic neurology* NOT “teach” us “to get along”-socially, and therefore I likewise reject as yet another social-requirement discriminating against Autism, the criteria of what is ‘neurotypically socially-appropriate.”
‘Neurotypically socially appropriate’ criteria cannot be used contrary to the Autism neurology in the same way stairs were used against people confined to wheelchairs.
In closing, I do not want to diiminish the significance of what you said in the rest of your post. Thx !
Sorry for the typos — I have synesthesia and really can only see to read in pictures. Some Internet print is not accessible, and I cant see to read letters and words very well unless they are symbols that look like pictures.
corr:
“I agree with must of what you say” = I agree with most of what you say
“that makes me an artistis Autistic savant on running around unproductively trying to socially “please” (feed the dopamine-receptor social addictions) the other non-Autistic neurotype.” = that makes me an artistic Autistic savant on running around unproductively trying to socially “please” (feed the dopamine-receptor social addictions) of the other non-Autistic neurotype.
“(by hiring Autistics for our talents, not to give Morphine-like feed-the-dopmine-social pleasantries-addiction of the other 40 % LESS efficient brain type ?” = (by hiring Autistics for our talents, not to give Morphine-like feed-the-dopmine-social pleasantries-addiction) of the other 40 % LESS efficient brain type ?
“AS you suggest I should have to” = As you suggest I should have to
My friends on FB say I should be able to get adult Autism help to get a proof reader to make sure my pictures Autistic savant art brain converts ALL of the pictures to letters when I am writing. Ha ha – I WISH. Where I live Good luck if the Talented people get any financial help for THAT help, that should NOT to too much to ask.
Where I do indeed agree with you on all that you have said, the reality of whether or not these things will come to be in my lifetime are highly in doubt. In the mean time, we need to cope. We need to be able to have jobs to provide for our selves. And yes, we need to know what it takes to get us hired to said jobs. Because unfortunately it is a nuero-typicals world still.
I do indeed advocate for the very things of which you speak. But I do not think that learning how to cope now with things as they are so we can be as independent as possible should be neglected either.
Do I think we should have to do these things and conform to thier standards, no. But is that the reality of the world now as it stands, yes. Until they are ready to accomodate us (and we must hit them and advocate hard and continue to promote awareness, acceptance, and how we are at our best, we must fight hard and take it to the streets, and I do sir, believe me, for seven long years I have been in the trenches) we must not allow thier system to keep us from reaching our full potential.
We should not be kept from the jobs we need because it’s a nuerotypical world. And until they listen, the alternative is to learn how to cope, and as we get these jobs, and more people work with us and see how valuable of an asset we are to the work force, perhaps then the very things you mention will start to be more talked about amongst employers. That has certainly been the way with mine.
By the way I resent you saying I try to keep up with the Joneses! You don’t even know me! I have never done anything of the kind! I do what I have to to SURVIVE! I’ve been on my own since the day I got out of highschool. And I may not like the system in place for hiring people, but when you are on your own and supporting yourself, you don’t get to be choosy as to what you will and will not accpet for an job application process.
You learn what you have to learn to get along in the world and be as independent as possible. I fight for a better day of all the things you mentioned. But I also think that the day is far off when those things will finally come to pass. We should keep on fighting for it yes.
But until that day comes, we need to know how to get jobs and interact with those around us in said job in the man time. Should they learn to accomodate and tollerate us? Absolutely!100000000000000% YES!!! Is that the world we live in now? No it is not.
And for autistics on thier own right now, who desperately need jobs and do not have the skills to deal with the application process as it is now have the right to services to teach them these skills so that they can get jobs and provide for themselves. SO that they can pay the bills and survive.
I DON”T BELIEVE THAT “people on the Autism spectrum should have to conform to some socially-abelist “norm” ?”!!!!!!!!!!!!!!!!! I know you di dnot mean to offend, but that really did affend me. And so did the keeping up with the Joneses! I don’t believe in that nonsense anymore than you do. SO please do not put words in my mouth. I wouldn’t do that to you!
I’m sorry to get so upset. But I wanted you to know how your words affected me. I am trying desperately to help people like us live in this world and have happy, sucessful lives! Helping those like us means more to me than my own existance. And that is why your comments cut me deep. Made it seem like I didn’t care, that I would rather serve the “norm” than help my own! That is the furthest thing from the truth.
I want to help people like us to be all that they can be in the world that is here now! Prepare for the world that is, demand for a better world.
This is a call for research to find out what will help autistic adults most.
I think that what this research will show (if it is done properly) is that the best way to help autistic adults is the same as the best way to help everyone else, by showing acceptance, protecting them from bullying, exploitation and abuse, and helping them contribute to society in the best ways that they can.
What we should do is try and ensure that this research is done properly and that the data collected is in a form that is useful in informing policy.
I think that means first doing a large (at least thousands) study of what autistic adults are doing now, what is working for them now, what is not working for them now, what changes can be made that will improve how life it working out for them.
Me again. I reread that post and realized I got over emotional, and did not read the last sentence of that post. My heart is to help, so I got upset that someone would think otherwise.
Also, what I said I believe was honestly misunderstood, and hopefully more more logical post before the emotional one clears that up. I apoligize for my behavior.
Theo, maybe before you name call about me, you should look at how YOUR words affected others.
Are you an Aspie, can over come the barriers and “make it work” for you ? Good for you.
I am NOT an Aspie. I am an Autistic savant, that means I CANNOT simply “buck up” and “make” the process in place “work” for me. My disabilities are too severe to overcome those barriers by simple will power.
I have lesser cerebral blood flow in the savant-making areas of my brain. This means I CANNOT use the job application forms and formats out there now. I CANNOT communicate with others unless it is in tweet format and sometimes on blogs. Definitely NOT if it is paper print, telephones, and in most cases, not in-person until and unless others are familiar with my neurological condition.
You can get yourself all riled up about how you have the ability to “serve the ‘norm,'” and goodie for you ! That is NOT possible for me. My brain function PREVENTS me from conforming to “the norm,” as much as Kim Peek / “Rainman” could not conform to the norm.
So, you need to get off your high horse and see how it is for those of us with a more severe form of Autism than you have.
I CANNOT get hired in jobs because I am not getting hte paperless-Internet tweet style formats I require to work. I cant work in sensory overload places, either. I cannot work without a flex-schedule. I have many ups and downs with my Autistic savant disability.
I CAN write a White House level U.S. Supreme Court petition with the Autism access accommodations I need and require. I CAN paint like DaVinci or Michaelangelo. I’ll bet I could even achieve an Oxford degree right now if I had the Autism access accommodations I need. Intellect is NOT the issue — Autism barriers are.
The jobs access in NOT there. There is no amount of “coping” to “get along in a job” that is possible. I have tried for 53 years, with possibly the highes Qualifications of any Autistic savant who has every lived. Taking a denialist stance does NOT change that inhumane fact.
How bad do those in the U.S. who want to keep the Autism spectrum people down want to PREVENT us from having a Quality of life ? Bad enough, US intel obstructed my Autistic savant artworks from reaching my PRIVATE FB News Feed page — PURE CENSORSHIP.
So, if yoou are going to get upset, at least why don’t you direct it to those who are oppressing our Autism spectrum neurotype, not another Autistic savant.
Thx.