Statement to the Interagency Autism Coordinating Committee
My name is Kristina Chew and I am an Assistant Professor of Classics at Saint Peter’s College in Jersey City, New Jersey. I am the mother of Charlie Fisher, who is 10 1/2 years old and who has autism. I write a weblog about autism, Autism Vox, that attracts some 4000 visitors a day from around the world, from autistic adults and parents of autistic children, to doctors and teachers and journalists, and many more members of the public.
According to some autism organizations, parent advocates, and the media, it is most important to find the causes of autism and to find treatments for autism. But finding out whether or not there is something in vaccines or in the environment that is causing autism is only one among many concerns in the autism community. Families with autistic children and autistic persons have other issues than what we hear about on Oprah and Larry King and from Jenny McCarthy. Families also want to know about education, about schools, about daycare and afterschool care for autistic children. They want to know how integrate autistic children not only into classrooms, but into all aspects of every day life in a community. They want to teach their children to be as independent as possible so that their children can learn how to get jobs, take care of themselves, and lead fulfilling lives.
We need research to find out what are the best educational methods to teach autistic children to communicate, to interact with others, and simply to learn. We need to figure out what are the best types of school environments that autistic children can learn in and how best to train teachers and therapists, and also how to maintain autism programs over time. I know that it is possible to create a high-quality education for autistic children in the public schools; my son attends a public school program that some autism experts say is as good as the best autism schools in the country. Further, we need research to find out how to prepare autistic children to get and keep jobs and to live as independently as possible, and how to best integrate autistic persons into our communities. Films such as Autism is a World and The Key of G show how autistic adults, even with severe disabilities, can live as full-fledged members of a community. Books such as Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker and Reasonable People: A Memoir of Autism and Adoption by Ralph Savarese also provide perspectives about autism than you will hear in the mass media.
Autistic adults tell me that they want to have their voices heard and their experiences about life with autism understood. Other perspectives about autism can be found in the words of autistic adults like Ari Ne’eman, the President of the Autistic Self-Advocacy Network and a college student studying politics and economics, and like Kassiane Alexandra Sibley, who can be heard speaking at a conference on autism and advocacy at Fordham University in October of 2006. Rather than focusing so much on preventing and curing autism, we need to turn our attention on how to make the world better for autistic persons, through education, jobs, and understanding, by listening to the full range of voices and perspectives on life with autism.
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POSTED IN: Autism Organizations, Disability Rights, Education, Legislation, Politics, Treatment
24 opinions for Statement to the Interagency Autism Coordinating Committee
RAJ
Nov 30, 2007 at 5:55 pm
People can walk and chew gum at the same time. There is far more tax payer funded money spent on education of autistic children in one year than will ever be spent on finding cures and prevention in anyones lifetime by NIH funding into causation and experimental treatments. The costs of educating autistic children in New Jersey is astronomical and is paid for primarily by property taxes that fund local school district education.
I don’t understand your complaint.
Kev2
Nov 30, 2007 at 6:14 pm
I appreciate you posting the Fordham University conference link. It was indeed good to see Kassiane speak.
Autismville
Nov 30, 2007 at 6:37 pm
I’m so glad you were able to make your comments. You have gift for getting your point across in a very effective, non-threatening way. Master of the reasonable tone you are …
“Rather than focusing so much on preventing and curing autism, we need to turn our attention on how to make the world better for autistic persons, through education, jobs, and understanding, by listening to the full range of voices and perspectives on life with autism.”
This is where we differ ever so slightly. I’m greedy! I want even more research into cause(s) and cure(s). I also completely agree that we need to make the world better for autistic persons now as you so eloquently stated…
I guess we should just bake a bigger pie. Must start digging for that elusive recipe. :)
Kristina Chew, PhD
Nov 30, 2007 at 8:19 pm
More and more, as kids get older and they learn and grow and we love them, however and whatever their diagnosis, I think our focus hones in more and more on the same questions. It was an honor to be present at the meeting; heading back to NJ now where (as RAJ) notes, property taxes can be quite high.
One member of the IACC did note in passing that a group of special ed teachers in Maryland said they did not know what to do with students with autism.
kyra
Nov 30, 2007 at 8:54 pm
amen, sister.
Another Voice
Nov 30, 2007 at 9:06 pm
Kristina,
Nicely put, as usual you packed a lot into a small space.
Beth
Nov 30, 2007 at 10:14 pm
Well said, Kristina.
Autism (and related conditions like Asperger’s) are very complex and the sound bites that average people hear don’t begin to explain this condition, never mind how to help people who have it achieve success in life.
Hopefully, your words will help open up some doors for discussion.
It’s Not Whether You Win or Lose…….
Dec 1, 2007 at 1:29 am
[…] that vaccines “can cause the disorder,” a number of Grossman’s comments on at the IACC meeting on November 30th were about services, especially for autistic […]
Kristina Chew, PhD
Dec 1, 2007 at 10:22 am
With the benefit of hindsight and more sleep — I should have put something into the statement referencing the subjects of mainstreaming and inclusion and the use of padded rooms and restraints. We need research into better methods and practices for these. The research talked about takes the focus of being preventative; it was about preventing autism in children who aren’t yet born, one could say.
Regan
Dec 1, 2007 at 11:28 am
I think that there is quite a bit of research that exists already on restraint and isolationary timeouts. The piece that is missing is widespread transfer of the findings to practical and ethical application in applied settings such as schools so that they are not applied incorrectly or capriciously, and that other less restrictive and probably more appropriate strategies are applied before those come into play. Not to mention that according to law there are things called FBAs and behavior plans that are supposed to be involved.
That is the reality check on research–application and enforcement of regulations.
Kristina Chew, PhD
Dec 1, 2007 at 11:34 am
Would research be needed on how to implement those findings? On the need to look into how consistently FBAs are done and on follow-up and procedures?
Regan
Dec 1, 2007 at 11:47 am
That might be useful.
Transfer of technology from research to practical application is often a problem, in many areas of education. Often times it boils down to rules and regulations, and even then there is the additional step of enforcement, reporting violations and sometimes court cases to force adherence to regulation.
And yes, it’s too often found that people don’t apply findings and go with misunderstandings, misinterpretations or their gut instinct.
Regan
Dec 1, 2007 at 11:55 am
Also my apology Kristina.
I’m a little sleep deprived myself :-), I missed the key word that you included…”practice”.
Yep, agreed.
Kristina Chew, PhD
Dec 1, 2007 at 12:00 pm
Sleep deprivation is rule rather than the exception around here (so coffee is a constant……)! Because the CAA is directed towards research, I was wondering about research regarding “delivery of services” and about how to better teach teachers and therapists to in turn teach children to manage difficult behaviors. Regan, there’s a listserv for the IACC that you can sign up for—-they are going to be asking for the public’s input on how to use the CAA funds and they really want to know what people think is needed (I’ll be posting a link to this).
Regan
Dec 1, 2007 at 12:09 pm
Thanks–I’d appreciate knowing how to communicate with the committee members. I know other people who would also be.
Really, thanks.
Back from the IACC Meeting
Dec 1, 2007 at 12:53 pm
[…] the Boston-based Autism Consortium—followed, and then statements from the public (including mine, statements by two mothers of autistic children, Kathy Neas of Easter Seals, Ari Ne’eman of […]
Kristina Chew, PhD
Dec 1, 2007 at 1:08 pm
Here’s the website for the NIH’s autism listserv—updates will be sent out about how to send in input about the IACC’s strategic plan.
Sarah
Dec 1, 2007 at 2:33 pm
“I want even more research into cause(s) and cure(s).”
The “cure” mentality does no favors for autistic people. All it does is tell them (us) that they’re in need of “fixing.” Making a better world for autistic people now and searching for a cure are incompatible goals. I also tend to think that those who hope for a cure are entertaining a pipe dream. Autism is a complex condition which shades every aspect of an autistic person’s experience. I don’t believe the science to make an autistic person normal exists or will exist for a very long time. I also do not think that such technology–which would fundamentally change who people are–even should exist.
Daisy
Dec 1, 2007 at 11:14 pm
Thank you for speaking up, Kristina. Your advocacy puts the priorities in the right order.
Regan
Dec 2, 2007 at 12:27 am
Just as an FYI, I think the link to the NIH-autism listserv is (temporarily) not working.
I tried the direct link from this blog, went through the main portal (which had the same link) and even typed it manually.
Each time–Object not found! error.
I sent an email to the webmaster. I might suggest that others who are stuck when trying to access the subscription/archives, do so too.
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Sharron
Jan 17, 2008 at 9:19 pm
As a mother of a 10 year old autisitc son, and Autism Lifestyle Coach. I agree with most of the statements about needing more funding for other issues that affect families with Autism. My husband and I homeschool our son becasue the schools here in Colorado aren’t capable of handling the various types of autistic children in a classroom along with children who can’t read or speak English.
Everysince we started Homeschooling the Signs and Symptoms of Austim have decrease. Teachers are not equipped to handle autistic children in a regular classroom setting. We should not ask this of teachers . We as adults are only setting up our children for failure in schools and classrooms that are not prepared and properly trained to deal with ASD. When you get a chance please visit my website http://www.informparents.com
J. Albertson
Apr 9, 2008 at 3:10 pm
A question- not an opionion.
I’m a teacher and am doing research on autistic populations. Can you please tell me what percent (roughly) of autistic adults in the US are able to keep a paying job over a lenghty period of time?
Thanks so much.
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