Running With, Not Against, Autism
I’m not a NASCAR fan and so have not had much to say about this weekend’s Autism Speaks 400 NASCAR Nextel Cup race which has been postponed due to rain. When I think about autism and race cars, my thoughts turn to the 50 or so Hot Wheels many relatives and friends bought for Charlie and that I put into the special collector’s case my parents bought Charlie. Charlie played with maybe two of the cars (this was when he was 4 - 6 years old) usually by lining them up bumper to bumper and looking at them while I tried to simulate race, crashes, etc.. When it comes to cars, Charlie’s preferences has always been for The Real Thing—-the green or black cars in the driveway that can take him somewhere.
I look back on those days with hindsight and think, there’s more than one way to play with cars……..and it’s not the end of the world if Charlie does not play with them “appropriately.” There is more than one way to be “appropriate.” And sometimes Charlie just needed more time to start to do things: We got him a solid plastic scooter when he was 5 years old and he mostly stood by it and sang the song that Po the red Teletubby did on one of the shows (the scooter, if you may remember, was Po’s “favorite thing”). We modeled scooter riding, tried to show him how to hold the handlebars and move his legs; stationery scooter, and Charlie, remained. Jim and I concluded, scooter riding is not an essential learning skill. It was a happy surprise for me when, last fall on a visit to Charlie in his classroom, I saw him get up from his desk, ask his instructor “Can I have scooter?”, get on one, and glide off down the hallway. He has his own now and the driveway is the perfect place to glide and ride.
I used to think we were, metaphorically, running some race—against autism, against Charlie getting older; I used to think that we needed to hurry hurry hurry. That, if Charlie did not reach certain milestones by a certain age we had failed. That, we had not done enough, had not tried enough. It is not unusual to hear the argument made that “we have to do everything for these kids when they are young, when there is this brief window of opportunity, or the cost to society will backrupt us.”
You can read this kind of statement in the June 3rd San Antonio Express News about Texas lawmakers reviving House Bill 1919. The Texas Association of Business wants to see the bills vetoed because of an amendment that “changes the definition of autism from a mental illness to a neurobiological illness” and also requires insurance companies to cover treatment for 3-5 year old children. (If the bill passes, treatments that could be provided by insurance include applied behavioral analysis, a tested approach for treating autism, and such services as behavior management, speech therapy, physical therapy and occupational therapy.) Supporters says that the bill “will give families hope, save some from bankruptcy and reduce long-term costs for taxpayers.” I am with the families here, but I think the point needs to be made, that providing treatment for children is about a lot more than money and costs. It is about getting autistic children the services they need because they need them, because they more than deserve them—-as the six autistic children of the Kirtons in Utah most definitely do.
The Kirtons are honest about how hard it is to raise their six children. After Robin Kirton once said in the presence of an Early Intervention worker last fall that “the family’s Murray home [was] so dirty that some days she was tempted to ‘burn the whole thing down and start over,’” the state’s Division of Child and Family Services appeared in an hour. All six children were placed at the Christmas Box House for two weeks. Three of the Kirton children had been diagnosed with autism at that time; afterwards, a juvenile court judge ordered that the other three be evaluated, and they too were found to be autistic. And yet, learning their children’s diagnoses “also helped the family in certain ways, [Robin Kirton] said. ‘For one, it helped make sense of all the stress.’” She notes: “‘If I had, say, six normal kids or less kids that were normal, that would be easy for me. God knew I was up for the challenge, so he made it.’”
Watching Charlie tonight runing back and forth to the couch (intermixed with grabbing a tortilla chip from a bag or giving me a hug from behind or casting himself stomachdown on the cushions) I am reminded: When you’re a parent raising autistic children, it really is not about how fast you run, but how well you run the race.
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POSTED IN: Charlisms, Insurance, Legal Issues, Money, Politics, Toys, Treatment
7 opinions for Running With, Not Against, Autism
Jennifer
Jun 3, 2007 at 7:32 pm
(Coming out of hibernation here, now that I’m finally catching up on the end-of-year teaching things!)
While I understand the “hurry, hurry, hurry” sentiment, I thought I’d share a couple of things. One is that my program specialist has mentioned several times that kids seem to have multiple “aha” moments in the junior high years.
She says it’s as though as their bodies mature, all the things we’ve been trying to shove into their brains (if you recall, I teach grades 4 - 6) for years finally gels.
The second is that I once heard a speaker from the Down Syndrome Educational Trust in England say that her daughter, who left high school with minimal reading and writing skills, had more “aha” moments as she moved out into the real world as saw practial applications for things like reading and math.
(Such as buying your own groceries or dinner at Subway and reading about Walt Disney’s trains or programming your TiVo, if you’re my brother. :-))
I don’t think people ever stop learning, myself. So while I understand the feeling, I think the better comparison is marathon rather than sprint. :-)
VAB
Jun 3, 2007 at 11:58 pm
Well said, Kristina. The thing is, no matter who you are, it’s all about how you run the race. Happy runners tend to make it to the places they want to get to, or make it to other places that hadn’t been in their plans but at which they are nonetheless happy to arrive at. And no matter where you do or do not go, if you are happy on the way, that’s is all you can really hope for. The image you painted of Charlie running around the house is a happy one. There you go. You did it.
And, Jennifer, what you say makes perfect sense, too. Even among NT people, the times at which learning occurs is a mixed bag. Among neurologically exceptional people, it is even more likely that this going to be the case.
AJ
Jun 4, 2007 at 5:58 pm
Having a “been-there-done-that-still-going-through-it” moment, Kristina….
There are times I look at Ely (who infrequently plays with toys “appropriately”), and then I think to myself, “Who determines what is appropriate? Is it the toy manufacturer? Her teacher? Her SLP? Me???” (No, not me….I’m still learning!) When she’s lining up eight or ten little teeny (all different)Dora dolls along the edge of the table, my heart has been known to sink a little. But then I see her tap-tap-tapping them up the steps of a little teeny slide, and she’s babbling nonstop and laughing, and I figure out that they are TAKING TURNS going down the slide. At those times, I can’t help but think….appropriate. A year ago (with a year less of preschool), the scene would just look like Dora boot-camp.
As for HB 1919 (as a resident of Texas), the debate rages here….the fairness (or un-) of ending coverage at age 5 (both of my ASD kids would not qualify), as well as the fact that (if I understood correctly), the bill was amended to remove ABA coverage. Of course, everything can be taken back a step…extended coverage, say to age 18, would be great. ABA coverage would be great (though we do not participate). But first, Texas has got to provide an incentive to attract the professionals who can provide the therapies, as well as attract the students to study to become professionals. There has to be a grass-roots commitment to take care of these children, adolescents, and young adults…and that commitment is sorely lacking in this state.
In keeping with your statement about “running the race well”, I’m with you. Might I add, “and remember to keep your eyes open at all times”! (That’s a reminder to myself…)
AJ
Robin Kirton
Jun 5, 2007 at 12:36 pm
Kristina,
Thank you for your kind words and for putting some of our article on your blog here. I really like your comment today about running the race, doesn’t matter how fast you run, but how well you run the race. Amen! I constantly have to remind myself of this because otherwise I’d lose sight of what’s most important and what really matters. I absolutely KNOW in my heart that all children are a gift from God, and especially our special needs children. I believe that they are so darn special that their purpose in being here on this earth to help the rest of us be better.
Love,
Robin Kirton
Autism Services: What might insurance cover?
Jun 6, 2007 at 6:35 pm
[…] to provide some autism services; Autism Bulletin has a map showing which states (lawmakers in Texas recently passed such a bill). Today in the New York Times writer David Leonhardt comments on the […]
whatamess
Jun 27, 2007 at 2:05 am
I’m sorry that so many seem to be optimistic about such a bill…I honestly believe most of it is a disgrace and a slap in the face to children with autism. This bill is nothing more than the governments way to save money, while making it seem like they care about children with autism…
Here is a letter a wrote…
Although I applaud you for taking the time to introduce this bill, I cannot quite understand where this truly benefits the children. In your website it also states it will benefit adults diagnosed with autism. How will this be if it is inteded ONLY for children 3-5? Is it that children who are not diagnosed early are not worthy of the same treatment? Can you please explain to me why “cancer” or “diabetes” coverage for insurance companies is not limited to the first 20 years of a person’s life? Honestly, who cares if a 60 year old dies of cancer…they’re old anyway…isn’t that correct? They do not deserve the same treatment as a 10 year old, since the 10 year old has a healthier body and therefore, a better chance of recuperating…
I know this sounds harsh, and again, I am thankful that at least the state of Texas feels that “some children” are worthy of being covered by insurance…it’s just too bad that the state can finally admit this is not a a psychological disease, yet at the same time decide who is “worthy of receiving treatment”.
If I have misunderstood you or the governor of Texas, I welcome your position…as it stands, I’m not sure I agree with the bill.
In the press release from Rick Perry, he basically discussed how much Texas would save in tax dollars…which means, he’s ok with passing this bill and putting the financial burden on the insurance companies, so that he can save some tax dollars…not so that he can take care of children in the state of Texas.
Maybe someday the state of Texas will say that some people are worthy of diabetes treatment, but others are not, especially the way some cultures eat less than healthy food…it is a shameful day when people applaud such legislature.
Autism in the Family
Oct 5, 2008 at 12:40 pm
[…] (dated January 28th) in MLive.com describes the family and each daughter. The Kirton family have six children and all are autistic. “Autism X 6,” a documentary about the Utah family, recently aired […]
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