Autism and Politics: We're On The Island of Misfit Toys

There's been a lot of talk about disabilities on the Presidential campaign trail. Sarah Palin has been presented by the McCain campaign as an expert in disabilities by virtue of the fact that she has an infant with Down Syndrome and a nephew with autism. The Obama campaign has put out statements regarding the Senator's commitment to disability issues and correlated that to having a staff member with a child with autism.

Well aren't we just in the news, autism Moms and Dads? Big whoop, I say. Newsflash, autism is to the disability world what cervelles de veau is to a snooty, French restaurant menu. Sure, it's French food, but it ain't Chateaubriand, no one quite knows what to make of it, and very few people order it. (I'll digress from my topic for a moment to share the origin of my cervelles de veau reference. As a senior in college, when autism was still 1 in 10,000 if I may date myself, my boyfriend and I went to dinner at one of New York's finest restaurants, La Cote Basque, which closed in 2004. I've no idea why we decided to go so fancy. Perhaps because he had his dad's credit card. Anyway, I used my best high school French and ordered the cervelles de veau, knowing that veau meant veal. God bless the waiter who asked me, "Miss, have you enjoyed calves brains in the past?" I blanched and ordered something else, I don't even remember what -- I'd have taken the frogs' legs over the calves brains!) OK, back on track now.

Yukon Cornelius, the silver and gold metal prospector from Rudolph the Red Nosed Reindeer, sums Hermie the dentist's and Rudolph's plight on The Island of Misfit Toys like this, "Why even among misfits you're misfits!" because they aren't toys. That's how it feels have to children with autism. We never quite fit into any disability, teaching or medical model other than those created just for autism.

Until recently, many people with autism did not qualify for basic state level services through departments of developmental disabilities because their IQ's were too high to meet the "mental retardation" criteria by which departments provide services. And yet, some of these folks could not hold a job or live independently. Massachusetts, a liberal state with excellent services for people with disabilities, only added an autism division three years ago to address the fact that many people with autism were falling through the cracks.

Take a look at health insurance. If you've a child with Down Syndrome, your insurance will cover the myriad medical issues you're likely to face, including heart surgeries. You've probably seen that states are just now adding mandates for services to cover people with autism. And they are spotty at best. It's an uphill battle to get even basic speech and occupational therapy and even harder to get ABA therapy within the confines of health insurance, let alone actual medical treatment.

Autism isn't a physical disability whereby the hurdles are a function of access or mobility.

Tiptoe into the iceberg called "causation" with me for a moment. If you've a child with Cystic Fibrosis or Muscular Dystrophy or any number of genetically identifiable or medically diagnosable diseases, as a parent you take stock of the situation and act in concert with the entire medical establishment to help your child, knowing that the disability was a fait accompli over which you had no control. If you've a child with autism, you may have watched your typically developing toddler stop speaking, develop GI problems, start flapping his arms and float ever further away from you emotionally, like a cork in a current you can't control. This alone is a stark difference between autism and other disabilities.

As my colleague at Age of Autism Dan Olmsted keeps reminding us, autism is a new disability and the numbers have exploded in the last two decades. That means our children were not destined for a life of disability. Their disability was probably the result of causes we (or someone) could have controlled, including vaccinations and environmental pollution. Here's an analogy (I know, I know, there she goes with the analogies.) If you're the parent of a child who runs into the street and is hit and killed by a car, you're devastated. But if your child is knocked off his tricycle by a drunk driver who runs up onto the sidewalk where you were peacefully minding your own business and tending to your child who had on a helmet, arm pads and knee pads, you feel another level of devastation and even anger. You'd done everything you thought you could to protect your child, and yet somehow you end up wondering if you pushed your child into the car's path.

Many of us in the autism world are particularly concerned about the state of vaccine safety and parental choice, including the availability of medical, religious and philosophical vaccine exemptions. This does not make us "anti-vaccine." I'd liken us to the parents who started MADD in response to drunk driving. MADD didn't say, "We need prohibition! Outlaw liquor for everyone!" It fought for better laws, more understanding of the ramifications of drunk driving and measurable changes to the definition of drunk driving (blood alcohol levels) to increase safety for the general population. That's what we want in the context of the vaccine safety and parental choice debate.

So while it's encouraging to hear the word "autism" included in the political discussion, both campaigns need to know that we don't fit easily into their Santa Claus sacks of promises.

Comments

[vmeyer]

With the 2008 presidential election only days away, I seriously hope that Autism advocacy groups get to and remind voters that days before Sara Palin promised families children with a disabilites huge financial support, John McCain (the supposed leader of the ticket) promised a "spending freeze" until the budget is balanced. I would like to believe her, but I do not. Autism advocacy folks have a strong voice - and they vote.


.

[LizzieDK]

I have been very hesitant to jump in on the politics of Autism. I think everyone needs to do their research and vote for the person they believe will do the best job for this country and their family. And as a parent of 2 ASD boys I want the same things as most ASD parents...more funding for THE RIGHT research and more of THE RIGHT services and of course Healthcare coverage for the treatments that work. I doubt that either candidates will accomplish all of this. They can (and probably do) both make promises that they either cannot, will not and/or do not plan to keep . It is really hard for me to understand why everyone has such an issue with Sarah Palin. If you scroll down you will see what she managed to accomplish in Alaska for SPED. She has a child with special needs and a nephew with autism - and from every report she is quite close to her sister. So does this make her an "expert" probably not, but she does have the most personal experience of the 4 candidates, and she has a PROVEN track record for special education funding. Which is more than the other 3 can say. She has a sister who's likely to have her ear, and a child that will show her first hand the struggles we face (not exactly but still). I have to say it is hard for me to put "promises" ahead of history/record.

[dlk24]

As the Mother of a 20 year old son with a very high IQ but with a spectrum disorder that no one can see, I loved reading this article. We've spent many thousands of dollars over the years, battled with the public school system did we eventually pulled our son. Maybe someone will finally do something about his inequity, but I doubt Sarah Palin and John McCain are the people to do it.

[linwessels]

Love the MADD analogy, Kim. Right on the mark!

[chapnalli]

"Many of us in the autism world are particularly concerned about the state of vaccine safety and parental choice, including the availability of medical, religious and philosophical vaccine exemptions. This does not make us "anti-vaccine." I'd liken us to the parents who started MADD in response to drunk driving. MADD didn't say, "We need prohibition! Outlaw liquor for everyone!" It fought for better laws, more understanding of the ramifications of drunk driving and measurable changes to the definition of drunk driving (blood alcohol levels) to increase safety for the general population. That's what we want in the context of the vaccine safety and parental choice debate."

Kim-AWESOME POST! And the above paragraph is brilliant, this is the message that needs to be heard!

[nhokkanen]

For BlackJAC, a news flash -- Science and politics are intertwined. Read the critiques by former and current editors of medical journals NEJM or JAMA, such as Angell, Kassirer, and DeAngelis. Pharma funding is corrupting research. As long as vaccines remain profitable, they will continue to be exculpated for the neurological and immunological damage mislabeled "autism." This despite thousands and thousands of vaccine injury reports to VAERS, the VSD, the NVICP and the Federal Autism Omnibus Proceedings.

[BlackJAC]

So the reason someone can't get their own unaffiliated third-party lab to look into this problem is because they're obligated to get the money from the people who are making the stuff being investigated in the first place? Louis Pasteur and Jonas Salk must be spinning in their graves right now.

[cblakey]

Once again, Kim, you've hit the nail on the head with your usual humor and eloquence. And was was the defect in the doll again? I'll give you 5 bucks if you can tell me!

[Kim Stagliano - Huffpost Blogger]

Oh my gosh, you've got me! And I did not cheat and look it up. Let's see, the train had square wheels. The water gun shot out jelly. The fish swam. The cowboy rode an ostrich (my favorite.) The Jack in the box was named Charlie. The doll... "I don't have any tears left to cry." Um, she was a transvestite? Keep your $5 but please tell me!

K

[Kim Stagliano - Huffpost Blogger]

The bird swam! I meant the bird. Duh!

[DesertFlame]

Not only do we need to fight to have Autism treatment covered by insurance, but we also need to ensure that those people who are privately insured are not dropped from their insurance company for seeking Autism treatment. My husband is self employed so we have to buy our own health insurance, which unlike employee sponsored plans, we can be dropped from if they feel just cause.

[BlackJAC]

Can we please end the self-righteous politicized posturing on this matter and just let the scientists work the problem?

[CraigWilloughby]

Sure, when we can get self-righteous members of the Church of the Immaculate Vaccination to quit being rude to anyone who has a difference of opinion. We'll stop it when we can get doctors who aren't wh#$&s for the pHARMa-scum (tm) to do independent studies on a vaccinated vs. unvaccinated population. We'll stop when people and doctors start LISTENING to us instead of calling us idiots, ridiculing, bullying, attacking, and dismissing our legitimate concerns.

Does that answer your question?

[robbie44]

My job is babysitting an autistic child full time and from my experince ive found it to be far more rewarding than difficult,but difficult it is........­..........­....good looking out!

[Kim Stagliano - Huffpost Blogger]

Robbie - that's so nice to hear that you find the job rewarding. We depend on good people to help us with our children. Every day there are horror stories in the news about teachers and aides and other "professionals" abusing our kids. Autism can mean very difficult behaviors. And so many people just aren't trained well enough or have the patience to work with this population.

You don't happen to live in Ct, do you? Are you available Saturday evening? Mark and I sure could use a night out! ;)

Kim

[momuv2]

Thank you so much for this blog. My Autistic son is 19 years old and I am yet finding my way on what I need to do for him. All children are different so my son is a "misfit among the misfits". I had to leave my career behind to take care of him and now work at home making half of my salary from 17 years ago. I'm a single mom with a second child who is highly gifted that requires a different kind of special need, but no disability. They are quite the duo.

I have fought with the Federal gov, State gove, local education systems, insurance companies, doctors, child suppport services, dentist, psychologist, pharmacist, lawyers, advocacy groups, behavorist, case managers, churches, child care, family, friends etc...... This lifestyle is a labrynth of decisions that require nerves of steel and incredible instinct. The constant changes regarding all the above mention is why it is so hard to get a real grip on things. If you make the mistake of using last years info or someone elses experience, you may mess your kid up and can't reverse the bad decision. That is an incredible amount of responsibility to have for someone else especially without the right tools. It's all very complicated.

I love my son and daughter so much I have committed my life to insuring the quality of their life at all cost and the cost is high.

Thank you again for this blog.

[JustMom]

Island of Misfit Toys is our theme for our Christmas tree, every year. We have felt this way for a long time. We embrace it as we have no choice. Your article makes perfect sense but we have a child who endures autism.

[lisasigismondi]

This covers more than my tired ASD mom brain can handle. Palin has no idea yet what she is in for - and she probably has fabulous insurance coverage - and she probably has held her autistic nephew at arms length or else she would have more intelligent things to say about it other than - I AM YOUR ADVOCATE. No matter which way I turn politically, i am screwed financially. 2 ASD sons, no therapy or biomed covered. Prescription for Risperdal - covered. Antipsychotic for 7 year olds are fabulous.

Instead, I did biomed - my 7 year old is now 8. He never was given drugs to control behaviors - and he has lost mysteriously his diagnosis. My kid is fixed - merely quirky, instead of out of control - all out of pocket - thousands of dollars. But Risperdal is the only thing that would have been covered. It's a freaking crime and I worry about the kids that didn't get the right help. ADHD drugs anyone?

"Island of misfit toys" has always been a favorite of mine and now is for my kids as well. With 2 ASD kids, no wonder. My eldest may not techinically be ASD today - but he remembers what it feels like.

[typicalpol]

Thanks Kim

The Island of Misfits toys analogy touched something in me. I had thought that before when going to one of my son's classes at school and thought about how the autistic kids seemed alienated in their own island (room) and none of the other kids wanted to play with them.

I would add that frog legs aren't bad.

[Jen4Obama]

I feel personally offended whenever I hear McCain or Palin say that she knows what it's like to have a child with special needs, and/or that she knows more about Autism than anybody else does (summed up from the 3rd debate, not his exact words).

Until Governor Palin has sat in on the myriad of IEP meetings, doctors appointments, counseling and psych appointments, medication consultations with pediatricians, social services evaluations, etc. that I have for two prepubescent autistic boys, then she can't ever speak for me on what it's like to have a child with special needs.

She won't find out until her son is older just how much is involved in caring for one of these precious kids, and given her income and status in society I doubt she'll ever have it as hard as some of us do.

Also, given her record with funding for special needs, she has no right to speak on behalf of parents like us who have been dealt this hand and have been struggling with it for years.

[linwessels]

Governor Palin's Record Of Supporting Those With Special Needs

"And as governor, I've succeeded in securing additional funding and assistance for students with special needs. By 2011, I will have tripled the funding available to these students." -- Governor Sarah Palin, 10/24/08

Governor Palin Has A Proven Record Of Commitment To Special Needs Children:

Governor Palin Has Increased Funding For Special Needs Education. Overall funding for Special Needs students has increased every year since Sarah Palin entered office, from $219 million in 2007 to a projected $276 million in 2009. Breakdown below:

· FY07: $219,358,041

· FY08: $220,420,268

· FY09: $275,827,909

On March 28, 2008, Governor Palin Signed Legislation That Will Nearly Triple Per-Pupil Funding Over Three Years For Special Needs Students With High-Cost Requirements. Per-pupil breakdown below:

· FY08: $26,900

· FY09: $49,320

· FY10: $61,380

· FY11: $73,840

Governor Palin Has Directed State Funds To Other Special Needs Programs. This funding includes $500,000 for diagnostic services for autistic children and $250,000 for training in early autism intervention in her FY2009 budget.

The Executive Director Of The Association Of Alaska School Boards Called The New Funding Palin Fought For A "Historic Event." "Carl Rose, the executive director of the Association of Alaska School Boards, praised the changes in funding for rural schools and students with special needs as a 'historic event,' and said the finance overhaul would bring more stability to district budgets." ("Alaska Legislators Overhaul Funding," Education Week, 4/30/08)

[amdachel]

Kim,
I was struck by your remarks about the position of autism in the world of disabilities. Why aren't we moving mountains to help these kids develop to their fullest potential? I've seen three stories in the news in the last two weeks about kids with autism being subjected to real abuse in school. In Waltham, MA, the Daily News Tribune reported about parents of six autistic students who have brought charges against a teacher because she "allegedly engaged in finger-bending and forceful pushing and shoving that caused bruises, cuts, a bleeding lip and limping."
http://www.dailynewstribune.com/state/x1197760881/Teacher-of-autistic-children-in-Randolph-under-fire
In New Britain, CT, parents of two students accused a teacher of "locking an autistic 6-year-old boy in a dark closet, pouring water down a student's nose until the student choked and tying a child to a chair and screaming in his ear."
http://www.newbritainherald.com/site/news.cfm?newsid=20176046&BRD=1641&PAG=461&dept_id=10109&rfi=6
Finally, a story out all over FL told about a middle school student with autism who was tased by police. The school called in the authorities because the boy refused to leave the bathroom. When the officer approached the young student, he reacted with a blow that broke the policeman's hand.
http://www.tampabays10.com/news/watercooler/story.aspx?storyid=92464&catid=58
It seems we're a society unable to deal with autism.
Anne McElroy Dachel
Media Editor: AGE OF AUTISM