Education and Autism Advocacy
Whether or not Seung Hui Cho was autistic has been the dominant topic of discussion on autism blogs and on the internet this past week, even though it is not at all clear if he was ever formally diagnosed as autistic. As a result, an event that was actually about autism—-the April 18th and 19th Institute of Medicine (IOM) workshop on “Autism and the Environment: Challenges and Opportunities for Research”—-has yet to be widely discussed (Autism Diva throws a shoe or two at the IOM in her post)—-and I hope the workshop receives a wider response.
As journalist Arthur Allen writes in Autism, Mercury and the Anti-Merc Activists: Whose Conflicts? in the April 21st Huffington Post, the IOM workshop “was a time for discussion among scientists pursuing possible links, and a chance for some of the autism ‘advocacy’ community to press their research priorities on government and academic scientists”: Note the quotation marks around the word “advocacy” in this quote. As Allen points out, the advocacy of the parents of autistic children the IOM workshop was specifically focused on vaccines and mercury poisoning, and a purported link between these and autism. Parents who believe that their child became autistic as a result of a vaccine were both in the audience and speaking on one of the panels at the workshop: This latter category included Lyn Redwood and Mark Blaxill of Safe Minds, Laura Bono of the National Autism Association (NAA), and Sallie Bernard of Autism Speaks. Both Safe Minds and the NAA assert that autism is caused by mercury poisoning; while Autism Speaks is not so focused on mercury and autism, Bernard was the co-founded of Safe Minds).
“[S]ome of the individuals in these groups, especially in SafeMinds” are, as Allen writes, “disingenuous. They are playing at scientific seriousness while refusing to acknowledge the data”: In the face of the facts, some Safe Minds activists have continued to insist that there is an autism epidemic that is specifically caused by mercury in vaccines. Thimerasol was removed from the Hep B, HiB and DTP shots starting in 1999, but the prevalence rates for autism have continued to rise. Nonetheless, the same claims about mercury poisoning causing are still made by some autism “advocates” and Allen notes some further reasons for this:
Many of the people in the “mercury” camp (including SafeMinds’ Lyn Redwood, and NAA’s Laura Bono, both participants in the IOM workshop) are or were involved in lawsuits charging that their children were made autistic by mercury. And as Blaxill himself has pointed out (for example in a 2005 meeting at the CDC), you don’t have to have a financial conflict of interest to cling stubbornly to a flawed position. It’s enough to have too much professional pride, or to belong to a community of belief that will heckle or ostracize you if you step out of line (Blaxill, at the time, was talking about what he perceived as the pediatrics community’s unwillingness to face the fact that it had been poisoning kids for years). [my emphasis added]
After you’ve spent years shouting at the government, participating in flawed Congressional hearings, writing junky “investigational” books and reports, ginning up gigantic legal claims that cost the courts, the public, and the drug companies hundreds of millions of dollars, and spreading unfounded slander against government scientists on the Web, it’s pretty darn hard to step back and say, “Whoops, I was wrong.” I just wish I could find someone–anyone–willing to do that.
I wish the same.
I consider myself an autism advocate but my advocacy is not for the same reasons—not with the same agenda—as the parents mentioned above. Mercury did not cause my son Charlie to become autistic. Autism is not equivalent to mercury poisoning, whatever might be hypothesized as the source of the mercury. While all of us parents of autistic children are linked via countless experiences of raising our children—while we share more than much in common—-the autism advocacy of autism parents is not tantamount to campaigning against mercury in vaccines or, too, in finding biomedical causes for autism and biomedical treatments for our children.
Education is at the top of my agenda for autism advocacy. It seems too obvious to say that we need to education autistic children now; that we need to understand what educational methods and practices and other therapies can help our children to learn best; that we need to be well-versed in special education law. However well a child might do as a result of various biomedical treatments, every child still needs, still deserves, a quality education.
Another major component of my autism advocacy is “witness and hope”: These are the themes of the autism and advocacy conference that my husband Jim organized and that was held on the 27th of October last year at Fordham University in Manhattan. Jim is a professor of history and of religion at Fordham and, as he wrote, the conference featured
“the varieties of advocacy practiced with and by persons with autism, especially those forms of advocacy grounded in moral and religious traditions…….We hope to promote greater engagement with autism advocacy as an integral component of work for social justice.”
Autism advocacy can and does mean a lot more than claiming that autism is caused by mercury in vaccines. It is about self-advocacy. It is about acceptance. Whatever role the environment is found to play in the aetiology of autism, we have to help autistic children learn and grow to reach their full potential, and that is not going to happen by any biomedical treatment, any chelating agent, nutritional supplement, or device from a hyperbaric oxygen chamber to an infrared sauna.
Allen notes that “many of the scientists in this field and at the workshop table were drawn into it by the fact that they have autistic-spectrum children; that’s a bias, of sorts, but it’s also a strong motivation to find real causes and treatments of the disorder”; I would like to make clear my particular bias as regards my autism advocacy agenda. I am the mother of an autistic son. I am also “in the education business”: I am an assistant professor of Classics and an advisor to students about graduate school and special scholarships at a small college in Jersey City, New Jersey. I know from my own experiences in the classroom that, when one’s students are not learning classical Greek, it is my job as a teacher to figure out other methods to help them learn, just as Charlie’s teachers and therapists are forever brainstorming new ways to help him learn to read, to learn to type, to express himself. For the record, I am involved in no lawsuits concerning my son’s education. I take great professional pride in promoting education, for special needs children, for college and university students; education is lifelong (I keep encouraging my dad, who retired two years ago, finally to take those courses on archaeology and Mandarin Chinese that he has long been curious about).
Education is “the other autism e word,” it seems: Right now, it seems that the “environment” (if not “epidemic“) is more often referred to (consider what was talked about on Oprah’s autism show). You can’t go wrong with calling for the best education for autistic children and—as every parent of an autistic child knows—education for our kids can be a complicated and highly specialized matter, and that is why we need to advocate for it—-whether there is a workshop at a federal government about autism education, or not.
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POSTED IN: Cause, Education, Environment, Epidemic, Health, Legal Issues, Science, Vaccines
19 opinions for Education and Autism Advocacy
Shirley Sexton
Apr 22, 2007 at 1:11 pm
In regards to self-advocacy, I urge you to ask Congress to fully fund the Combating Autism Act and ask your member of Congress to cosponsor the Expanding the Promise for Individuals with Autism Act of 2007. We have provided tools on the Easter Seals Web site to simplify this process at: http://www.easterseals.com/site/PageServer?pagename=OPA_action_alerts
media frenzy
Apr 22, 2007 at 2:48 pm
… not until they change the name to “Combating Autism Bigotry Act” or something not filled with hate for autistics.
Lisa/Jedi
Apr 22, 2007 at 3:08 pm
I agree. Even though this act may eventually end up helping my autistic son, the words that are used- “Combating Autism”- are hurtful to him & to us as a family. I don’t need anyone “combating” my son or his autism. Life can be difficult enough as it is…
Kristina Chew, PhD
Apr 22, 2007 at 3:44 pm
The military language of the CAA’s name is worth mentioning in any communication with a member of Congress—–if one substitutes “autistic persons” for “autism,” the bill would be the Combating Autistic Persons Act. And advocacy for education is more about “expanding” the potential and all that’s great about our kids.
Andrew & Rayna Houvouras
Apr 22, 2007 at 7:16 pm
I couldn’t agree more. We deal with a disorder with one of our children: hemophilia. While we have submitted his blood & stats as part of a huge study to, hopefully, come up with a cure, we are always more immediately concerned with educating ourselves and others about this disorder, common ways to improve the quality of life, etc. Cures for cancers, hemophilia, autism are unlikely to occur in our lifetimes. My son is no different today than he was before his diagnoses. Our worries, though, are a few more and our actions are changed.
Kassiane
Apr 22, 2007 at 7:27 pm
My congresspeople know exactly what I think of the Autism Eugenics Act.
They know that I believe it makes good toilet paper as it is currently written. I told them (both Senator and Representative) this to their faces.
They’ve worked with an autistic adult (not me) for years. The response I got was more receptive than a form letter.
Moi ;)
Apr 22, 2007 at 9:16 pm
Ah, Kristina, you know why Education is avoided.
No one wants to fund Education. Doing it right costs too much money. It upsets the taxpayers. It would also make more obvious all the problems with that infamous unfunded sham, NCLB, and gee, does Fearless Leader need the public to see yet another of his blatant failures?
Of course, you know that Education is my soapbox as well. When I speak of services, I speak first and foremost of Educational services. I am not talking about ABA. ABA is not a good fit for all autistics. We need to get out of that mindset, and focus on educating parents on education, education advocacy and education law, and educating the teachers as to how to educate the children according to their needs.
My son is 14. He didn’t get appropriate services for the first 10 years of his life, but it wasn’t for lack of knowledge on My part. It was because the school district didn’t want to spend the money. Imagine what happens to the children of parents who DON’T know….
Moi ;)
Apr 22, 2007 at 9:19 pm
BTW When I say that we need to get out of “that mindset”, I am not speaking against ABA. It works great for some. IEPs are for Individual needs. So ABA should not be the first thing schools or the government thinks about when talking about educating our kids. Yet it is, because those who are advocating for more ABA generally are the loudest - right now, anyway.
Julie
Apr 23, 2007 at 11:35 am
Education in reference to autistic individuals seems to have been abandoned to discuss what caused it. It does not matter what caused it if we do nothing to help those who have it. We need to educate society the media and our autistic children. I am all for research and finding cures for things, but I do not believe that my daughter needs to be cured she needs to be educated so that she has more opportunities to be a contributing adult. I hear about the financial burden of education and life long care of people with autism. What about the cost of society to do nothing.
Moi ;)
Apr 23, 2007 at 1:06 pm
ITA, Julie. Partly those who do abandon the subject of education to that of cause are those who have children who are either not in school yet, or in elementary school. They are living in the now and not yet seeing the bigger picture, which is pretty normal.
So, just to play devil’s advocate….I am going to throw this out there.
Your child will ALWAYS have educational needs resulting from the autism. It will not matter what caused it, how much “curing” you can get done, how much language they attain.
My son is very high functioning and has been verbal since he was 5-6. He’s one of those on the edge, where he could succeed, or society could fail him. I never see him as failing, himself - because it’s not his responsibility to see that he gets the education he needs. That’s Ours - mine, the school’s and the gov’t. The education is his ticket to living on his own - or not.
It’s those last two - school and gov’t - that hold us back. Who do you think is changing the subject?
julie
Apr 23, 2007 at 3:02 pm
Absolutely, the schools and goverment are the institutions changing the subject to some extent. I live in New York State and there still is no protocal for children who fall on the spectrum but are diagnosed specifically with Aspberger or non verbal autistic. My daughter as well is high functioning and has been verbal since she was 1. That does not mean that she does not need services. I am fortunate because I worked with children who had disabilities in Michigan before I was married and also worked as an employment specialist for disabeled adults. I know that Rebekah will get the education that she needs because I know how to advocate for her. I find that a lot of parents do not have these skills and the schools are not passing out guidlines for them to follow. I am in the process of becoming certified as an advocate in New York. Maybe if parents were empowered to get the help they need for their children from the schools they would not be in such a ruch to try to “fix” them.
Autism Vox » Wishful Thinking: Searching for the Magic Bullet for Autism
Apr 24, 2007 at 2:19 am
[…] [Despite its title, this post is really a plug for education.] […]
Phil Schwarz
Apr 24, 2007 at 9:13 pm
Maybe, just maybe, if there were more adults on the spectrum in the governance of our major autism organizations, the great minds that gathered to draft and push through the Combating Autism Act would have thought of a less militaristic and disenfranchising title for the legislation.
Adults on the spectrum — their perspective and experience, their needs, their widely varying modalities of communication — are too valuable a resource for the “autism community” of parents, professionals, and clinicians to squander by continuing to alienate them. A title like “Combating Autism Act” does not help, even if the intentions are good. Remember that road to Hell.
Carla Wilking
Mar 23, 2008 at 12:51 am
Wow, Kristina, I am so glad I found people on here that have this thinking. I thought I was a nutcase. When my now 5 yos got placed in an AU pre-k which was part of an elementary school, I fell in love with the teacher when she said something in passing, “well this is the way they were made”. My child started the class seeming somewhat low functioning, but after two years of the class, he is now proving to be high-functioning. But now I am dealing with my school system. The elementary school we’re in isn’t in my zone or ‘assigned’ school, so next year they are saying my son needs to be sent to the school in my zone. My son always vocalized to some extent at home, but for all of last year my son spoke in a whisper at school. Well, September of this year he finally became comfortable enough to speak out and now his language is expanding DAILY! He’s socially blossoming (He gets integrated with typical pre-k kids located on the other side of a huge room with a divider many parts of his day). He’s academically zooming ahead. His teacher has been taking him to a regular ed K class that is structured similar to his and he was in his element…love learning new things. BUT NOW…they want to put this child in a place where he is sure to regress. Do you know what the chairman of the special ed division of our school system said??? “It will be hard, but they’ll get over it!!!!!” He loves his current school. He gets excited when he sees the administrators, his teachers, even his peers. Can anyone help give me suggestions and arguments or maybe legislation to keep him at his school? I applied for a transfer request, but I won’t know anything for a few weeks.
I LOVE what everyone here is saying. My child has made a ‘miracle’ change and I didn’t do anything to his diet, I didn’t give enzymes. He is RARELY going into his world because right now, his world is about learning. I and another parent each spoke for 3 minutes during public comment at a recent board meeting, urging the board to consider their policy and what the administration is doing. It was amuzing to see the flycatching they were doing with their mouths hanging open, speechless. In our town we think there’s a buddy system with the local papers too, because there were reporters there, but no ‘negative’ story was mentioned. Sorry this is long.
Feel free to email me anything. I’m new here, and new to advocacy, but you know what? It feels good!
Kristina Chew, PhD
Mar 23, 2008 at 1:49 am
@Carla,
I love that you wrote “his world is about learning”—this is just what I feel for my son. And what the chairman of the special division said—barely quotable!
What kind of class would they send him to in “your” zone? Can you observe it or have an outside evaluator observe it and his current placement, and report on the two placements—-and on why one is appropriate, while the other is lacking? (Assuming that it is.) I will be in touch soon about specific laws etc. Completely agree about advocacy—it is good and just the right thing to do! Very best wishes—-
Carla Wilking
Mar 23, 2008 at 12:01 pm
I spoke with the teacher of the class in my zone. There is an autism class for K-2, and an autism class for 3-5. So they are lumped together for one. Let me tell you about his current class set up first. His teacher is TEACCH trained. Her class, however, is not totally modeled after TEACCH. She believes that our world is not structured, so she teaches them in structure, but also teaches them how to cope without structure. Yes her room is colorful with distractions (but she knows how to keep them focussed!). Her class is most beneficial for higher functioning autism, but I call her a miracle worker for what she accomplishes in lower functioning kids. She has a frog swing in her classroom (my sons favorite and helpful for his SI needs). They go on field trips that are so good for them (Going to a nursing home and singing for the old folks and handing out valentine care packages with decorated tissue boxes), or going to a beauty school and letting the kids get a “make-over”. Her discipline works. (three squares pulled, then time-out). There’s magic in that I tell you!!! She made me some for home, and wow!
The teacher in my zone is more strictly TEACCH, little toys, white walls, etc.
There is a business club in our county and they host 3 events in the year, one of them a Christmas dinner (fancy-but with hotdogs & burgers) held for the special ed children in the county. Well, our family sat at a table besides the table with kids from “my zone”. There were a couple very disruptive, low-functioning. I was told that those kids were actually in my son’s class for prek, and when they left, they were nothing like that!
My main reason for not wanting him there though is because of the regression that is bound to happen for being in a place where EVERYTHING is different: building, people, students, schedules.
Thank you for any help you can give. There’s a TV news station that we’re thinking of giving a call to since the newspapers don’t like reporting negative things about the school system. THe news station isn’t in our county.
Blessings,
Kristina Chew, PhD
Mar 23, 2008 at 7:38 pm
@Carla,
The teacher’s combining of structure and flexibility sounds ideal. Could get an outside consultant to observe how your son does in the one setting and then to observe what the other is like? Do you have documentation from previous placements (that were, perhaps, more “rigid”) where he did not do as well?
I definitely know how you feel about regression from everything being different—am thinking that using documents with measurable gains on goals might be especially important in building a case for your son staying where he is. (Maybe the school district might try to say that it would be good for him to have a change so he doesn’t get so dependent on one teacher and classroom——just brainstorming here.)
Carla Wilking
Mar 24, 2008 at 7:19 am
The problem I have is that currently he is working at or above grade level, which wasn’t evident until about November or December. To start him in a new place, we’d have to re-train his emotional and social skills first then move on to academics. Whereas if he stayed, he can keep moving forward with academics. He is familiar now with both the K autistic and K regular ed teachers as he sees them every day.
I did have an incident of recently going to his OT appointment which was a new time and day, and he walked in and the waiting area was crowded (the rehab has ot, pt & speech). He saw another lady who has been a fill in because they are short an OT person. BUt my son saw her and not his regular OT, and he crammed himself into a corner of the room. I never see him do that. But I think he though he would have to see the substitute. But when he saw his own OT (who he adores) come out he felt better to get out of the corner.
We also know that because of the influence of his older brothers who like starwars that when my son gets near strangers, it rubs him the wrong way, and recently he’d wave his arms around as if he’s shooting or zapping or light-sabering. We’re working speedily on stopping him on those occasions where he blurt out “shoot them”. I can just imagine that being said in the new school and he get sent to the principals office maybe handcuffed away!
I am in the process of trying to de-clutter to be prepared to put our house on the market. THey say if I produce a listing with the intent to move to our school’s area, they’ll let him stay (a year is given to sell).
Kristina Chew, PhD
Mar 25, 2008 at 5:05 pm
@Carla,
I know even how you feel about moving your son—–we recently toured the middle school where Charlie will be for the next 2-3 years. He has been in the same school with some of the same aides, same SLP, OT, and APE teacher, for 2 years, and also with the same set of kids (with one who is new and happens to be—like Charlie and one other child in the room—-Asian; this seems to appeal to Charlie). The teachers are carefully managing a transition for the whole classroom and I hope some aides might continue—–as Charlie has gotten older, he is much more aware of the teachers and environment, physical space, etc. around him and therefore change has to be managed carefully.
Sighing over the thought of what a new principal might do on hearing your son say “shoot them”…..
It sounds like your son is making great progress where he is—-can you provide paperwork, progress reports etc. to show how much this relies on his current placement?
We’ve lived in a number of school districts in New Jersey, but we don’t have the rules about having to live in one “zone” or other—-Charlie’s placement has been determined by his needs, not by where in the town we live.
Again, it is possible to get your son evaluated by an outside evaluator, perhaps a neuropsychiatrist? That person needs to come and see your son in the current program and then see the program the district wants him go to. Then, the neuro. needs to write a report saying that the move would be detrimental and the current program is the most appropriate and the proposed placement is not.
Just to ask again: have you seen this new proposed placement? The district is required by law to let you see it.
Keep insisting that the current placement is appropriate and that you can document this.
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