IACC in California Today
Today, a daylong “town hall” meeting of the Interagency Autism Coordinating Committee (IACC) is being held at the UC Davis Cancer Center, as reported in the May 2nd Sacramento Bee. (Previous meetings of the IACC this year and last year have been held in Washington, D.C.) The meeting offers a chance to express one’s views about what direction the government should take with research about autism. While research is linked with notions of “treatment” and “cure,” I’m with Connie Lapin of Northridge, whose 40-year-old son has autism, and who sees the meeting as a chance to “talk about the long-term consequences of the diagnosis.”
She said it’s a conversation many parents don’t want to have because they believe their child can be cured of the disorder well before they enter adulthood.
“I would be the first person in line for a cure or recovery,” she said. “But what that does to a family is takes away their planning and their vision of what is really possible, even if it isn’t perfect.”
Lapin said she would like the federal government to fund research into the kinds of accommodations that are most helpful to people of all ages with autism.
“This focus on cure and evidence-based treatment is making us lose our way in terms of long-term care and life-span issues,” she said. “The person who has these challenges is still a person with the same needs as you and I.”
“Losing our way” about the “long-term care and life-span issues”: What Lapin says rings true. There’s ample evidence for this in the attention and discussion and energy devoted to a possible “cause” of autism, as if figuring out what causes autism and a cure for it are the most important issues. They may be to some, but it’s those long-term life-span issues about what will Charlie do when he finishes school? where will he live as an adult? that become more and more real to a parent, as she sees her son grow so tall that he looks her in the eye, and as she sits beside him at dinner and reminds him to cut his hamburger with a knife and pours on the ketchup, and nudges him to wipe his mouth.
Yes, it’s not going to be easy; yes, some significant resources will be needed to help Charlie and other autistic kids who will need lifelong care and support. As Kathleen Seidel writes in her most recent post about vaccine injury litigation, Mercury Fades: Sykes v. Bayer Dismissed:
There is no question that disabled individuals and those who support them need practical, respectful support in many life domains………….Whether Dominion Resources [operator of a coal-burning power plant in Richmond, Virginia], Bayer Corporation, GlaxoSmithKline, or any other deep-pocketed corporate entity should be obligated to compensate parents for the life-long support of their autistic children is quite another question.
Monday I’m going to a symposium about one of those issues, employment for autistic adults. (Here’s a video about disabled employees working for Walgreens.) I’m very eager to hear the speakers —service providers, policymakers, others—have to say about challenges and barriers, and about what sorts of training and teaching (of potential disabled employees and of potential employers) is necessary. At Charlie’s Friday IEP meeting, it was noted that the middle school program becomes gradually more pre-vocational and I wonder what kinds of jobs Charlie might be able to do that no one has thought of yet.
And for myself, by focusing on the day to day experience of life with Charlie, and by thinking of what he needs to learn to live a good life, I feel I’m beginning to see the outlines of a map that will lead us all into the future.
Tags: adults, asd, asperger, autism, autism blog, disabilities blog, employment, Family, family blog, jobs, Parenting, pdd-nos, us davis, walgreensRelated Stories
POSTED IN: Adulthood, California, Cause, Science, Work
25 opinions for IACC in California Today
Laura
May 3, 2008 at 9:31 am
personally, I’m pinning my hopes on the private, not the public, sector to advance on education and vocational training.
Kristina Chew, PhD
May 3, 2008 at 9:48 am
I still hope the public sector can move forward, certainly in education.
I’m starting to ask relatives to find out if the companies they work for employ disabled workers and how.
Bonnie Sayers
May 3, 2008 at 11:16 am
This is the place my sister who is blind and disabled has worked for many years (she is 40). This is in Flemington, NJ. I remember when I worked at Merck in Whitehouse Station back in 1994/95 that they employed CEA workers for the gift shop.
http://www.ceaemployment.com/
My sister went to the Midland School in the 70s. I think they are in North Branch.
I just read about a story being worked on in the LA TImes on families being denied health insurance benefits for ABA. They are looking for CA families to contribute.
Kristina Chew, PhD
May 3, 2008 at 11:21 am
@Bonnie Sayers,
thanks for noting about that story. I’ve met other families whose children attended Midlands, too.
Phil Schwarz
May 3, 2008 at 1:19 pm
I think that we need to get our autism organizations to invest in coordinated employer-education campaigns. The barriers standing between autistic people who have marketable skills and jobs and career paths which will leverage them are all changeable, if the insight and will is there.
(By the way: “autistic people who have marketable skills” most definitely includes people considered “low functioning” as well as those considered “high functioning”. In this and the coming decades, it will include your Charlie, my Jeremy, Jypsy’s Alex, Harold’s Conor, and many others.)
They’re not on the employers’ radar because they can’t clear one or more of the hurdles presently in place, that can be demonstrated to be unnecessary or replaceable with alternatives — ranging from the interview process, to social expectations of managers and coworkers, to workplace environmental conditions. All of these need to be scrutinized, and we need to make the status quo more costly to business than to remove the barriers. This is what was done, and is still being done, to remove barriers that have been historically in the way of other groups within society seeking full access to employment: racial, ethnic, and religious minorities, women, gays.
It’s always a matter of meeting halfway: the individual needs the training and practice to control what is not prohibitively cost-ineffective for him or her to control (and we’re aware of that side of the equation as a society, judging from the proliferation of behavioral and social-skills programs for autistic people), but the *employer* also needs to be made aware of, and made to implement, changes to *reduce* what is necessary for the individual to expend energy and bandwidth to compensate for. *That* side of the equation needs better articulation, and that is what autism organizations should be doing, instead of endlessly chasing causes and cures.
H6
May 3, 2008 at 2:45 pm
“instead of endlessly chasing causes and cures.”
If parents are to unify on issues like improving job prospects for the autistic, it probably doesn’t help to mock the ones who want to know the “cause” and possible “treatment.” They’re reasonable people deserving of respect. They’re not the enemy.
Kristina Chew, PhD
May 3, 2008 at 3:12 pm
Creating job prospects, working on housing and highly trained staff, making sure that autistic adults are integrated in the community and able to develope their talents and abilities—-in such areas as sports and athletics, music, art—–
Proponents of the need to find causes and cures tend to talk about autism as “treatable” as it if is something that a child could be cured from—-this creates the false impression that autism is not a lifelong condition, as it is.
thanks for the suggestions, Phil, very helpful in preparation for Monday’s symposium.
H6
May 3, 2008 at 3:47 pm
If people who are interested in “causes and cures” are creating “false impressions,” then I guess they’re up to no good.
Are scientists engaged in trying to find “causes and cures” for autism also creating “false impressions?” Is funding them a big mistake?
It seems like there are two autism paradigms here talking past each other acrimoniously. Neither one seems to respect the other very much.
Seems like one paradigm wants more funding for “causes and cures” research and the other wants to put an end to the whole effort. They even want there to be less talk about “causes and cures.”
In AIDS there were two paradigms and one paradigm successfully shut the other one up politically by labeling their opponents “denialists.”
Anyone questioning the AIDS orthodoxy risked being labeled an “AIDS denialist.” It will be interesting to see if that happens here.
Which group will be the “autism denialists?”
Regan
May 3, 2008 at 4:33 pm
Phil Schwarz-
Thank you. That was very well said.
H6
May 3, 2008 at 5:35 pm
This sounds like some scientists are still looking for “causes and cures” with some interesting findings:
http://www.ageofautism.com/2008/04/my-funny-virolo.html
Ms. Clark
May 3, 2008 at 10:21 pm
I was at the Town Hall meeting today. There were three other neurodiversity-leaning advocates there, too. Plus they had Dena Gassner who is associated with ASA (if I recall) who was on the afternoon panel. And there was one 50 year old woman with Asperger’s from Sacramento who doesn’t do much with the Internet, but got the announcement of the Town Hall through a email newsletter.
The promotion materials all but said, “This is only for parents. Autistic Self advocates stay home.” I complained to the reporter from the Sacramento Bee that she didn’t indicate that autistic adults were invited, too. It’s not surprising that only one autistic adult showed up (besides 4 of us who are basically active in online advocacy and Dena Gassner.) Oh, and a young man from UCD with Asperger’s who didn’t identify himself as being on the spectrum in his statements, but he did say he graduated from the “help group” which is basically a big special ed school system somehow allied with UCLA.
From the “other team.” All the “parents” on the morning panel were into DAN! (Lynn Mielke is a DAN! doc) and all plainly blamed vaccines for their child’s autism. Apparently, this was a criteria for being on that panel. Then in the afternoon there was Rick Rollens, who really isn’t much into adult issues and his son is 17, he of course, blames vaccines for his son’s autism.
Rick took time out from his busy schedule of hyping the non-existent epidemic to insult me directly. I’m honored.
Dr. Chez did a good job of putting the DAN! hype from the panelists and the audience squarely in it’s place. Lyndelle Redwood said very little, but it seems that she got her agenda fulfilled because when she restated what the audience members had said were their concerns, she stated things that seemed to be HER concerns that were not mentioned from audience members. Though many of the DAN! talking points were mentioned by the audience, Lyndelle seemed to have added her own thoughts. Now maybe that’s considered fair, I don’t know, it looked phony to me, because she was supposed to be listing “research goals that the public members and other panelists had stated”.
Her friend, Jim Moody, a lawyer and fellow member of SAFE MINDS was there.
Lenny and his lieutenant (Heather King) from the EoHam list were there. Lenny seemed very intent on getting a photo of me for some reason.
Lee Grossman was there and tried to push the epidemic while decrying the lack of services for autistic adults. Several people used the term tsunami and tidal wave. Rick Rollens seemed particularly gratified by that.
There were several MIND docs in the audience and Isaac Pessah was on the panel. He made a kind of cryptic statement about getting antiseptic products out of the home or something odd like that, as if he thought they were causing autism. He generally decried bad chemicals and said they needed to be studied. Oh, and Dr. Sally Rogers and Dr. Randi Hagerman said some really interesting, mostly positive things and they were on the morning panel.
Kristina Chew, PhD
May 3, 2008 at 10:33 pm
I would say, quite an honor.
Bonnie Sayers
May 3, 2008 at 11:21 pm
Wow those terms are certainly melodramatic. I will keep my eyes open on my CA groups to see what Rick Rollens shares, although usually I do not pay attention.
Ms. Clark
May 3, 2008 at 11:22 pm
:-) I hope you are never honored in quite that way.
It was interesting because there was no time limit, so it was different than your experience in giving a comment at the IACC.
Because the comments weren’t pre-screened, there were a lot of the parents talked about things that were not on topic, even some of the panelists talked about things that were not on topic. They seemed to just want a place to air their feelings and there was a lot of talk about funding services. Well, the IACC isn’t going to fund a study about how to get funding for services (i.e. they aren’t going to study how to shake funding loose from the gov’t for something other than research.) There was probably a half hour or more taken up with discussions on how “the gov’t” needs to fund services.
You could see how some of the purportedly NT parents had the same problem I have, knowing when to stop talking and keeping on topic.
There were some surprisingly great comments from parents and professionals who weren’t there to push the DAN! agenda but who weren’t what we think of as “ND,” either. There was a mom like blogger “mom26kids” who has 6 kids (she looked way too young and attractive to have had 6 kids) and 5 of them were autistic, the other child has ADHD. She was very much like Jeanette, very positive. While the panel was totally comprised of white, white and white people (except one doctor with a heavy Spanish accent who looked and sounded like she was probably from Spain, though maybe she’s from Central or South America), there were some ethnic people in the audience. There were several women who were probably Chinese (based on their names) and there were at least two women from India (based on their names and accents). I think I saw one African American person, which is pretty sad since the location was smack dab in the middle of neighborhoods that are mainly populated with African American people.
It’s sad that autism orgs are so overwhelmingly white and represent the viewpoint of upper-middle-class Anglo culture to a great extent.
Kristina Chew, PhD
May 3, 2008 at 11:37 pm
I kind of got a smaller honor when I was “accosted” after the meeting by “someone.”
There was some talk about “service delivery” at the Nov. IACC. Lee Grossman made similar points as you report.
Have noticed the “non-color” quotient at a lot of panels and conferences—certainly among the speakers.
H6
May 3, 2008 at 11:56 pm
“There was a mom like blogger “mom26kids” who has 6 kids (she looked way too young and attractive to have had 6 kids) and 5 of them were autistic, the other child has ADHD.”
Maybe I’m new to this, but am I alone in doing a double take here? Is this a one-family epidemic? A so-called cluster? Seems like the CDC should be studying this family in depth if this story is true.
That family should be on the cover of
Time and Newsweek.
Ms. Clark
May 3, 2008 at 11:56 pm
The woman who accosted you wasn’t there today, though the guy who is her love interest was. I don’t suppose she would have liked what I had to say. I mentioned Suzanne Wright in one of my comments and how she said she wanted the planet to be free of autism in her lifetime. I took exception to that. I suppose the woman who got upset with you would have felt she needed to defend Suzanne Wright. :-)
Ms. Clark
May 4, 2008 at 12:04 am
The beautiful blonde mom (with beautiful, long, pale-blonde hair in waves) who seemed to be too pretty and young to have 6 kids made the point that her autistic kids were all born autistic. She said they started screaming at birth and hadn’t stopped or words to that effect. She didn’t say it like she was a martyr, though, she was funny and kind. A lot like Jeanette. She made some other amusing comments.
Her main point was that she and her family were an obvious case of genetic autism (gasp) and she encouraged the IACC to use families like hers (large multiplex families) to find the genes that have caused autism in their families, with the assumption that the same genes could be found in other families with fewer children.
She’d make a very pretty cover-girl (mom) for Newsweek and I’d trust her not to say awful things about her kids in an interview. :-) She was prettier than Jenny McDumbell, more of a natural beauty, in my opinion, and radiating love for her kids.
I didn’t get her name from her name tag. I thought it started with an S and someone else said they thought it started with a K. (That narrows it down!)
H6
May 4, 2008 at 12:35 am
The fact that five of her children are autistic may also point to some environmental factor they were all exposed to. Maybe the mother passed HHV-6 onto them. That certainly seems to be a factor of some importance in autism. Who knows? Let the scientists take a look. Check their genes. Test them for HHV-6. Let the data do the talking.
As I try to picture her life and her family I’m having trouble believing that it is real. But nobody would lie about such a thing, would they?
Do people out there know of other families with that many autistic children?
I’m sure some are also wondering why she kept having children if they were turning out to be autistic. She would need an army of help I would think.
Bonnie Sayers
May 4, 2008 at 12:50 am
There is a family with five kids (O’Donnells) that was on Good Morning America and then the family with all six (Kirtons) of their kids and they have a website (autismbites.com) and were on morning shows too.
http://abcnews.go.com/GMA/OnCall/story?id=4245377&page=1
http://abcnews.go.com/GMA/MedicalMinute/story?id=1040687&page=1
With the long time it takes to get a diagnosis I remember reading of the family with six saying they got the first dx after all the kids were born.
I think there was also a family on Extreme Makeover Home Edition that had several kids, cannot remember.
I do know that for a long time I did not know of any other families with more than one kid on the spectrum. Mine are almost 12 and 13, so the dxs were in 98 and 99 (six months apart) Now it seems much more common for more than one in the family.
We are members of AGRE - kids father is paranoid schizophrenic and Alzheimers is in my family genes. I have heard in my yahoo groups about many families where one of the parents has eczema, allergies or asthma. I have all three. Plus I was pregnant with both my kids in NJ, worked at Merck when pregnant with first one, smoked during first pregnancy and drank well water in both. My sister is blind from a brain tumor, my Great grandmother had elephantitis (one fat and oneskinny leg) my aunt was born with one arm, my brother had spinal meningitis at 2 years of age and I was born a preemie (3 lbs) in 1960 and my mom had toxemia and we both got last rites in hospital and emergency baptism for me. I turned 48 last month. My 13 year old was treated at 3 mos for spinal meningitis but did not really have it, they could not do the spinal tap since he was chubby so they treated him as if he had it. My other son was born almost 12 pounds and he is nonverbal.
Kristina Chew, PhD
May 4, 2008 at 1:13 am
Regarding the Utah family with 6 kids—-this is their website:
http://www.autismbites.com/
Three of the children were diagnosed with autism only after the other three had been diagnosed, I think.
Have heard of many families with two or three children, not that they themselves call autism “genetic”……
Am sure (hoping) it’s not the last we’ve heard from the mom at the IACC with 6 autistic kids!
Ms. Clark
May 4, 2008 at 4:06 am
Jeanette’s family is the one that was on GMA and they also are the family from Extreme Makeover Home Edition.
I hope the mom from the IACC meeting reads this and comments here because she has fans now. :-) though with 6 kids (probably pretty young ones because she looked pretty young) she might not have much time to be reading blogs.
If you want to talk about judging books by their covers, me and one other of the “evil ND” who went to this meeting thought by looking at her that she was a mercury mom, before she got a chance to talk.
There was a mom there who wanted the IACC to study Lyme Induced Autism and a mom who swore that accupuncture had helped her son stop yelling in the classroom and she also swore by magic water drops (homeopathy).
As you might guess, even though “mitochondria” was not really on anyone’s radar for previous IACC meetings, at this one it was a popular buzz word.
Kristina Chew, PhD
May 4, 2008 at 10:16 am
So it really was a “town hall” sort of meeting—-comments from the audience were definitely limited to pre-approved presentations at the DC meetings.
An email discussion list I’m on publicized something about a lyme disease conference—-I guess they’ll be more notices about mitochondria now too.
H6
May 4, 2008 at 11:51 am
It might actually be helpful to the understanding of autism if there is more research on mitochondria.
Given that some cases of both autism and Chronic Fatigue Syndrome seem to involve HHV-6 raises the question of whether the same kind of mitochondrial dysfunction one sees in CFS can be seen in autism. And is it caused by HHV-6?
That seems worthy of scientific investigation.
Someone needs to do a controlled study of autistic children who are given anti-HHV-6 medications.
If they improve, that might cause a major shift in the autism paradigm. It might provide more evidence that immune system dysfunction is a major part of autism.
Bonnie Sayers
May 6, 2008 at 12:08 am
I read today from a google alert the following
Desert News, Salt Lake City, T
Lightening family’s load
Published: Sunday, May 4, 2008 12:30 a.m. MDT
“Kelly Peterson carries a bag of soil as Arc of Utah, University of Utah Health Care and Lowe’s team to remodel the Kirton family’s home in Murray on Saturday. All six of the Kirton children have been diagnosed with autism disorder. “
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