New Research, New Books, and New Hopes
It has not even been two full months into 2007 (a year of great significance for me as, come May 15th, my son Charlie will be 10 years old) and—in the wake of new research studies—some new paths to understanding autism are emerging. On February 8th, the CDC announced new figures for the prevalence rate of autism in the US, which is now 1 in 150. While this was not news to many—a prevalence rate of 1 in 100 has been reported in such places as the UK and in Sweden—the widely publicized lower figure—and in particular New Jersey’s rate of 1 in 94—was a catalyst for many asking “why” and “what do we do” (in New Jersey, six autism bills are being presented to the State Assembly this week). It is possible that autism can be diagnosed even in very young children and that there is a “very early autism phenotype,” according to research in the January 2007 Journal of Autism and Developmental Disorders; early autism diagnosis was also the subject of 60 minutes last night (you can watch the video on the 60 minutes website). Yesterday saw the publication in Nature Genetics of a new study on the genetic causes of autism: As much as 90% of autism may have a genetic basis.
Some conclusions that can be derived from all this are:
- There are more autistic persons than we had commonly thought.
- Autism can be identified and diagnosed at a much younger age than previously.
- Autism is genetic in origin.
I have been writing recently about autism myths, such as that between vaccines and autism and mercury and autism, as well as the notion that there is an epidemic of autism (such as has been proclaimed, in alarmist fashion, in full-page ads in national newspapers). These latest research studies paint a much more complex and nuanced picture of the causes of autism and, indeed, of what autism is, just as recently published autism books do; they strive to see our children not as chemically-damaged victims of human-made error, but as the whole persons they are.
There was autism in my family before Charlie: I believe my grandfather, who was a University of California-Berkeley trained civil engineer and a bridge inspector for the state of California (and who emigrated from China), had Asperger’s syndrome. My grandfather was original, and complicated, and insistent on things large (building his own house from the bricks up) and small (making his children eat whole grains and green vegetables before anyone did). This was who he was, and no one—until now—had a name for what I believe he had; for what made him brilliant, and yet very, immovably, set in his ways. It is not just that Charlie has, I think, “bridges in the blood“: He has autism in the blood, and I do not think he is alone in this. I am not surprised that we detected “something not right” in a very young Charlie: at 10 months, at 6 months, at 3 months.
I just did not know what to call it.
And, rather than cautioning against early detection and diagnosis about autism as potentially striking unnecessary fear and worry into parents of a very young child, I think we can take a page or several from the newest autism books and think about all a life with autism has to offer us. It will not be an easy life; it will be full of much that is unexpected; it will be rich in simple rewards and real surprises.
Autism is here to stay and we can start right now to say that a life with autism can be a good life indeed. As one autism mother commented recently:
I have changed entirely since discovering my son’s autism. Some friends have fallen by the wayside but have to say I am so glad this happened because the people I have met because of him has put back my faith in the human race.
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POSTED IN: Autism Lit, Books, Genetics, Health, Medicine, Neuroscience, Science
14 opinions for New Research, New Books, and New Hopes
Joe
Feb 19, 2007 at 5:12 pm
ABC’s Extreme Makeover made last night (2/18) an autism “doubleheader.” I also thought it was more interesting than the 60 minutes piece.
Kristina Chew, PhD
Feb 19, 2007 at 5:23 pm
What did you think about the “extreme makeover”>—-along with the genetic study news, it was quite a day.
Joe
Feb 19, 2007 at 5:33 pm
Met Mom26children’s family. Five of the six kids on the “spectrum,” and all across the sprectrum too. Two with “classic” autism, one with AS, and two with (I think) PDD-NOS.
Also learned about the Adaptive Sports Center (www.adaptivesports.org), which is where ABC sent the family while the house was razed/built.
Daisy
Feb 19, 2007 at 6:27 pm
I’d love to see the Extreme Makeover episode — if it re-runs, please spread the word.
Club 166
Feb 20, 2007 at 1:04 am
All I could think of when they showed up with their 50 people and signature megaphone shouting “Good morning O’Donnell family (or whatever their name is)” is if that were my family my kid would be screaming because of the sensory overload.
Also, Buddy Boy would never be able to watch the demolition of the old house. He had troubles for days when we had a stump ground down next to the house.
Kristina Chew, PhD
Feb 20, 2007 at 1:10 am
It was tough enough on Charlie when we went past his favorite restaurant and saw them taking out the chairs and tables and equipment (it was closing)…….
Autism Vox » The TV-autism theory, again
Feb 20, 2007 at 2:18 am
[…] If my previous post looked ahead to “new research, new books, and new hopes in our understanding of autism, this one takes a step back. […]
Rochelle
Feb 20, 2007 at 12:03 pm
I Tivo’ed Extreme Makeover Home Edition and watched it last night looking for the usual rhetoric of blame, shame, martyrdom, cures, and regret for my research. But, there wasn’t too much of that going on. Granted there was some–one decorator refers to the house as able to enable the youngest non-verbal son to be able to talk. She says something to the effect that the house will “get this boy talking. I just know it.” And, I’ve never really liked the program considering the producers’ preferences toward helping the most disabled of children. You might remember the ABC memo that circulated a couple months ago. http://www.msnbc.msn.com/id/12100098/
However, what resonated with me the most was that the show underscored the financial strain many families with disabled children face. Although the father worked two jobs so that the mother could stay at home to take care of the children, the O’Donnell family’s home was days away from foreclosure. The show raised the money through a benefit concert and donations to pay the house off. (Of course, don’t we all wish Extreme Makeover could pay off our mortgages.)
Perhaps I’m a little too cynical to find much comfort in the fact that a national broadcasting station would have to hit up neighbors and community members to donate money for the family. I was also a little disappointed with the “bootstraps” approach to the financial strain the family faced. The show continued to underscore how hard the father worked to provide for the children: “They are doing the best that they can” but it’s just not enough. I think if the producers had attempted to illustrate that the O’Donnell’s financial situation wasn’t a reflection of how hard Mr. O’Donnell was or wasn’t working but illustrated the few recourses available to them, the program might’ve been more effective to me.
No matter how hard we struggle to swim to shore, it’s almost impossible if your ankles are tethered together.
Julia
Feb 23, 2007 at 10:28 pm
Daisy, if you e-mail Kristina and ask her for an e-mail address of mine, I can see about taping off the DVR and mailing you a tape. (I’d need the address to send it to, is all!)
Kristina Chew, PhD
Feb 24, 2007 at 12:32 pm
Rochelle: That memo was a little more than revealing about they think “extreme” means—-the show itself needs a makeover.
Jeanette
Feb 25, 2007 at 4:59 pm
What they showed on the Extreme Makeover edition of my family’s show was not even 1/100 of the experience my children had. The producers and the design team were nothing but wonderful.
The show changed our lives for the better. They did not exploit us one time and showed our children nothing but respect and dignity.
I wish I had all of the hundreds of hours of footage they did not show.
The instructors at the Adaptive Sports Center in Colorado will be forever in our hearts. They were extraordinary in their dealings with our family. We love them all like family.
I also watched the show last Sunday with 70 members of our family and friends. It was hard to watch, but we believe they did a great job.
Jeanette
Rochelle
Feb 25, 2007 at 7:56 pm
Jeanette–
Can I ask you to elaborate a little more for me? What was “hard to watch”? I’m not trying to pry, but it’s not too often that I can ask someone directly about this experience. Just interested in your thoughts on the experience.
Like I noted earlier, there is often a rhetoric of blame that accompanies autism related television programming. But, the show specifically addressed your response to the “why did you have all these children” questions. And, I appreciated your televised response.
Still, I believe the show more convincingly illustrated the economic hardships faced by families with disabled children. Perhaps with more understanding and compassion, families like ours wouldn’t be so “extreme” or requiring an “extreme” home makeover.
Jeanette
Feb 26, 2007 at 2:00 am
Rochelle, It was hard to watch because I orgininally wanted to watch it alone. When I found that was not an option, I was a little worried of how EMHE would portray our family…
The producers and everyone were never anything but professional and amazing. Especially with our children.
They did not elaborate on why we had hardships…my husband lost his job last year. I also had a daycare and had to close when our youngest was born. So, we had a wonderful income until things, beyond our control, happened.
I have been questioned so much about the amount of children we have and why….
We were going to stop at 4…God had other plans. I was on low-dose birth control pills with the last 2 and breast feeding. I do not know what else I have to say about that.
Kiernan was a twin and we lost the other baby. I also had a miscarriage between Deirdre and Erin…8 children would not have phased us. We have much love to give.
Autism has never defined our children or our family.
We were chosen because of a dear friend and neighbor of ours. He saw we had a need and he was tenacious in his endeavor to get us this new home. I thank GOD for Stan every night.
I can answer any question any person wants me to. It will depend on whether or not you are open to my answers. I am not going to try to persuade you into liking or disliking the answers I give. This is who we are.
I will just say that we were never treated with anything but respect and dignity by any person of the EMHE crew…from the sound man, the gaffer, etc…we were treated like royalty. I love them all for that.
Bonnie Sayers
May 5, 2008 at 2:17 pm
I watched Extreme Makeover: Home Edition last nite and the family getting the house had two biological kids that they said were probably high functioning, but that seemed to be the only time they mentioned autism. This family fosters and then adopts kids and they found out from a lead test of one kid that the house and yard had lead all over the place.
How is this possible in 2008 that a family with kids does not know to check lead in the house? Think that has anything to do with the two kids possibly being HFA? I saw the kids and they did seem like they were on the spectrum to me.
I could see the 14 year old holding his head when he went into his room, probably sensory overload.
I was really stunned to see how clueless these people were fostering kids and then no agency seemed to even check out their home.
They also did not say if they tossed everything out from the house due to the lead and did not mention any resources to check for lead in a home. I was disappointed in this episode.
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