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.
Follow Kim Stagliano on Twitter: www.twitter.com/KimStagliano
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Kim-AWESOME POST! And the above paragraph is brilliant, this is the message that needs to be heard!
K
Does that answer your question?
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
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.
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.
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.
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.
"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)
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