My Autistic Son is Not a Political Pawn
Here's the good news and the bad news; autism has become a "hot issue" in the presidential campaign. Bad news because our ranks have grown to a full 1% of the American population and counting. Good news because the crisis this epidemic poses to our society at large is, at last, apparent to our government. At least it is to our politicians.
In tonight's debate, John McCain twice vaunted autism as one of the issues he would advocate if President. In fact, he held it up as one of the primary credentials of his running mate; Sarah Palin is the aunt of a child with autism (as well as the mother of a son with Down's syndrome). But here's the hitch. Being related to a special needs child does not automatically guarantee that a candidate will offer the best policies to meet that's child's needs. Any more than being a woman automatically assures that candidate will advocate women's rights. Any more than does running with one on a ticket.
When Governor Palin made her acceptance speech at the Republican National Convention this summer, I watched with rapt attention. When she looked into the camera and promised that those of us with special needs children would have a friend in the White House, I felt she was looking directly at me. I was moved to tears. But this is not a moment for sentimentality. Any more than when my son was diagnosed. Then, as now, I put my own emotional response on hold, in order to best analyze the problem, as well as the solutions. My son depended upon it. He still does.
McCain claims his regime will support research for a cure. Yet he also wants to freeze government spending. He claims he will advocate for families. Yet his health care policy offers a $5000 tax deduction, which Americans can put towards purchasing coverage. Any parent with a child on the spectrum knows just how little $5000 buys you. Services to support my son's development (outside of, and in addition to, tuition at publicly funded Special Ed day programs) easily runs past $90,000 per year. Thank God that California state-funded regional center services have absorbed the lion's share of those costs. But, as everyone knows, California is now bankrupt. Those services have been frozen. Children and parents are floundering. McCain proclaims to be a "Federalist." As often as possible, he would have individual states determine the welfare of their denizens versus Washington D.C.. If ever there were a time for the federal government to rise to the occasion of serving the needs of our people, it is this national epidemic. Twelve years ago, the rate was one in 10,000. Today (according to the NEH), it is 1 in 150. States cannot, and should not, be expected to sustain the demands this crisis presents.
Tonight, Senator Obama told us that every autism advocate he has met, stresses the urgent need to increase funding for medical research. He was right to tell the American people that this essential work will cost money. As a former board member of Cure Autism Now foundation, one of the first parent driven organizations to fund and grow bonafide, university based research, I attest to that. Piece meal tax rebates will not cover health costs for our families, as they contend with this lifelong neurological disability. Tonight, John McCain told us that Governor Palin "knows more about autism than any other American I know." Perhaps he should get out more.
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Then stop bringing him up for your own political movement! Sarah, you should be ashamed of yourself and McCain should be ashamed of pulling "Joe the (non) Plumber" into his political dirty arena. You folks amaze me. You pull these political stunts and then want to blame Obama and his supporters for your backfires. You orchestrate and use human beings as political tools for your own ambition.
People are not going to be fooled, not this time!
Obama/Biden 08'
Thank you for this page. Links to sites that support Autism Research and support would be great on this page as well. I like the new www.causec
http://www
Yea, politician are ignorant fools. However, a Democrat is more likely to help those of us with autistic children than any Republican. Republican's solve all problem via tax cuts and reduced government. Democrats are at least willing to add government programs. As a father of a son diagnosed with ASD, I know the cost. McCain has no clue.
We need change. I haven't seen a single thing that makes me believe that McCain will bring a sweeping change over Bush. Nothing... Palin is a joke.
damned right he is NOT a political pawn.I know a little about autism.Reg
The Palin baby already needs early intervention. They start Down Syndrome babies in programs as early as three months. In infant stimulation. The way this poor baby gets tossed around, I suppose he gets some stimulation, but it does not appear anything that is especially directed to him. He is an ornament, and it is very sad for this little baby. Right now is when he needs some special time to help him with his development.
I'm not an expert, but I think you are right about this.
Well, I AM an expert and you're wrong.
Intervention with "babies WITH Down Syndrome" (please note) before the age of 6 months involves massaging the baby, working the muscles (gently) to counteract hypotonia (when it exists, it doesn't always), caressing the cheeks and lips to strengthen mouth muscles. It also involves letting the baby interact with other people, get social, visual, tactile and auditory stimulation - all of which Trig Palin appears to be getting.
You know, there are families of people with Down Syndrome who post on here. Most of the parents of people with Down Syndrome I know are Democrats.
You can criticize Palin for plenty of things, but her mothering skills with Trig are sound and are an excellent example to other parents who might be unaccepting of their infant with DS.
As her sister (with whom I assume she is close) has a low-functioning teenage son with autism, I presume Palin is also extremely familiar with issues touching on autism, possibly more so than with Down Syndrome as Trig is so young.
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Laws, federal and state laws, are already on the books mandating the right kinds of educational interventions for children with autism through age 21 through the Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act. Likewise, insurance discrimination -- giving separate, non equal treatment coverage to a whole class of people based solely upon their disability (autism) is already prohibited by the Americans with Disabilities Act as well as Section 504, yet many states allow this discrimination.
In the grand scheme of things, helping the most kids with the known and scientifically proven effective treatments we have available NOW -- such as Applied Behavior Analysis and all of its sub categories such as Precision Teaching, Verbal Behavior, Direct Instruction, etc. -- is by far both the most cost effective and expedient way to reach children now -- not down the road in some indefinite time period.
While everyone should of course be encouraging research into the causes and cures for autism, we need to get busy now, with the tools we already have now: teaching these kids effectively and getting them appropriate therapy NOW.
For that to happen, we do not need money. WE NEED ENFORCEMENT OF EXISTING LAWS.
Money being needed for research into the cause or cure is a huge need. But we need to remember that correcting/helping or ameliorating causes and cures will most likely help 1) those not yet born; and 2) the youngest kids diagnosed with autism. Certainly while it is true that most kids can be helped, most experts and parents seem to agree that those are young have the best chance of being "cured" or otherwise losing the label of an autism spectrum disorder.
So what about those that already have an ASD, but may not be "cured" completely? What do we do for this group? Is not this group of kids -- kids that are now the ages of about 5 and up -- the most populated, over all the kids under say about age 5?
What is needed the most to help this group is enforcement of existing special education law, and an end put to discriminatory insurance policies. In many states, for example, it is perfectly legal for an insurance company to deny coverage for treatments known and scientifically proven to vastly improve an autistic child, adolescent or adult's learning, socialization and adaptive functioning, which translates to a shot at an independent and satisfying life.
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Today it's kids with autism, yesterday it was Joe the plumber, and the day before that it was pro-Americans. McCain/Palin like to pretend they are talking to people who are in her words "the fabric of this country". The fact of the matter is that everyday people can see through this and we're not buying it. So leave the children with autism, the plumbers, and the animals of the world out of this.
This commentary expresses well what many parents of children with autism know to be very true. As a parent of a child with autism, accessing and paying for healthcare services is very difficult. Depending on the state you live in, your access to healthcare for your child with autism can vary greatly. Our family is lucky to live in the state of Pennsylvania where children of autism are covered by Medical Assistance. Both medical and behavioral services are covered.
In addition, our state recently passed a law requiring insurance companies to pay for up to $36,000 per year for autism services. In many states, health insurers can simply deny services (i.e. OT, Speech) to a child with autism - many times saying they don’t cover “developmental conditions”.
It is easy to throw out the word “autism” at a debate without truly knowing what it means for children and their families. It is insulting that McCain would go one step further by actually telling people that Palin is his great source for information on autism. It is obvious to me, a parent, that his healthcare plan will do little if anything to help families touched by autism.
I am writing again, because I just read some of the other comments here...Sar
As the parent of a four year old cancer patient who is showing signs of Autism I can relate in some ways. I have attended about as many funerals for children under the age of ten that I can possiby handle. Yet you go on. One step and one day at a time. The fact is, our children are our miracles. Where would we be without them? I too cringed when John McCain made that ill advised off the cuff statement about how SP knew more about special needs children than anyone he knew.(and I'm a McCain supporter!) It was an obvious gaffe that belied his lack of understanding. But really, no one can possibly understand unless they have walked through what you have, or I have, or any of the thousands of families who have stood by feeling helpless as their children suffer.
Seems like Palin doesnt know what is wrong with her baby (THAT SHE HID FROM EVERYONE TILL THE NINETH MOMTH? WHY DID SHE DO THAT?) he is down sydrome not austic...I have an austic grandson, cute as a bear, and very smart..he is 4 years old..and he is not DOWN SYNDROM!..
Color me dumb. Until McCain uttered autism in relation to Sarah Palin's son I never realized that those with Down's Syndrome were Autistic.
Just for the record:
If you study the history of special needs legislation, you will find that nearly all of it, back to IDEA, PL 94-142, (TITLE I—AMENDMENTS TO THE INDI- VIDUALS WITH DISABILITIES EDU- CATION ACT) was written and supported by Democrats. Republicans, for the most part, have been opposed to the legislation for special needs kids.
Palin stated that she would make this a project of hers.
It's all well and good to vote McCain/Palin for whatever reasons.
It's a free country and all eligibles get a vote and that's fine.
BUT to say you'd vote the McCain/Palin ticket because you believe Palin's presence will increase even one single program in one single county of the U.S. is incredibly naive and I can't believe anyone who has dealt with special needs for more than six months or a year could possibly think there's a correlation at all.
For Positive, (Safe) Change and the Good Of America
VOTE: Obama/Biden 2008
My grandson is autistic. The disruption this has caused in the family is tremendous. He's four now, will be five in December. My son has taken a night job at lower pay and his wife has a day job, thus permitting them to be there for him 24/7. They are in way over their heads.
For Palin to claim authority on autism is an insult to any family struggling with this disability. Further, I fail to see how she can be an effective public servant and at the same time care for her down's syndrome baby effectively. I realize that down's is not the same, but i'll wager the intensity of the problem does not differ that much. My recommendation to Ms Palin? Give up your political career and devote some time to your family. After then, I'll listen when you talk about family values. Talk's cheap.
Frankly, it disturbs me the way she hands that baby around from family member to family member like a sack of potatoes when she's on stage.....
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