Chicken or Egg: What’s Behind the Increase in Autism?
Dr. Antonio Hardan, the director of the autism clinic at Stanford’s Lucile Packard Children’s Hospital, says this in a July 9th ABC Local (Bay Area) report about increases in autism diagnoses throughout the region:
“If you are diagnosed with autism you will get more services from the county from regional centers than if you just have an attention deficit hyperactivity disorder or depression.”
90 percent of Bay Area schools reported a rise in children with autism between 2005 and 2007, with Santa Clara County having nearly eight autistic kids per 1,000 students—-note that this figure is not about an actual increase in the number of children diagnosed with autism, but in the number of autistic children reported by school systems. Washington University professor Paul Shattuck has found that the number of children with an autism spectrum disorder diagnosis increased at the same time as the number of children receiving diagnoses of mental retardation and learning disabilities decreased (here is the study in the 2006 Pediatrics).
In my own experience, I’ve heard more than a few parents talking about getting an autism diagnosis rather than one for Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), as an autism diagnosis is more “severe” and can lead to more services. Since Charlie was diagnosed with autism in July of 1999—-nearly nine years ago—I seem to have heard fewer parents saying that their child has PDD-NOS. I’ve rather heard references to “mild autism,” “classic autism,” “severe autism”—-terms that can seem precise to a user, but which still need qualifications.
Johanna Jaeger, whose 14-year-old son Alex is autistic, is also quoted about what is behind the increase in the ABC Local report:
“Parents don’t make this stuff up to say, ‘oh gosh, I can’t wait to get into that system.’……….You know it’s not a club that most parents look forward to joining.”
It’s a sort of chicken and egg question, perhaps, whether or not you think the increase in autism is due to “something” specific that can be pointed to, something external and in the environment—-or whether it’s because of our being able to better detect and diagnose autism, significant changes in the diagnostic criteria for autism, the steady rise in public awareness about autism, and the increase in services, schools, therapies for autism (and college students).
It seems that everyone with a young child is concerned about detecting “signs of autism.” Certainly I’ve noted parents of toddlers in the wading pool taking a good look and listen to Charlie and then glancing back at their own child (and looking visibly relieved at times; so it goes). With more tests being developed to look for autism in infants, more children may be diagnosed or be put in the “possibly maybe wait and see” category. And if your child is autistic, parents so often find that a diagnosis — a label — can seem just a bunch of letters, some of which might provide more services than others.
35 years ago, the only reason we went to San Jose was to visit a now-defunct amusement park, Frontier Village (think bears in overalls with corncob pipes). San Jose meant farmlands and orchards and dusty streets, not “high-tech corridor.” I didn’t know anyone with autism or what autism is. I wasn’t looking: Was anyone then?
Tags: asd, asperger, autism, autism blog, Cause, cdc, Diagnosis, disabilities blog, disability, Environment, Epidemic, Family, family blog, Health, mercury, Parenting, pdd-nos, Science, stanford, VaccinesRelated Stories
POSTED IN: California, Diagnosis, Education, Epidemic
20 opinions for Chicken or Egg: What’s Behind the Increase in Autism?
Paul Bradford
Jul 10, 2008 at 11:27 am
Kristina,
Very interesting post. My daughter has PDD-NOS which in Pennsylvania equals Autism. I was a bit alarmed at how easy it was to get the Developmental Pediatrician to “give” us that diagnosis.
another question I have is where does SPD (Sensory Processing Disorder) relate to autism. Grace (my daughter) has trouble processing certain inputs.
Karen
Jul 10, 2008 at 11:33 am
My son was dx’ed w/ PDD:NOS (he’s 7) just a few months ago. I’d known since he was about 2.5 that he was probably on the spectrum; having the dx just helps me explain things to people. It was a relief in a way getting the dx. I’m grateful that I get services for him based on his need and not his dx.
I grew up about 5 minutes from Frontier Village! :-)
Hannah Zimmerman
Jul 10, 2008 at 11:35 am
That is an interesting post. There is actually an article in the Pitch right now about one of the best school districts in Missouri abandoning its autistic students. It is pretty interesting to anyone who has dealt with autistic children. Here is a link if you want to check it out…http://www.pitch.com.
Rose
Jul 10, 2008 at 12:27 pm
I am in a most bitter mood today, and apologize. The reason why autism is being recognized is because in a service economy, there is money in it. It’s a “cash cow”, so to speak.
I warned you…
Paul Bradford
Jul 10, 2008 at 1:12 pm
Rose: I can see that. In anything, once it becomes “political” lobbyists, and lawyers come out of nowhere supporting “the cure” because hey.. if there’s a cure, there must be something causing it like global warming, vaccines, or contaminated foods, and thus someone to sue. i’m not in a mood… this is just how I am. :-D
Kristina Chew, PhD
Jul 10, 2008 at 1:27 pm
@Rose, Can you say “moo”……
@Paul Bradford, interesting—-was there a different diagnosis that your pediatrician thought might better suit your daughter (if I may ask)? There are a lot of overlaps with Sensory Processing Disorder and autism and finding more about sensory needs and how to address them has been very helpful with my son. I wrote about SPD here:
http://www.autismvox.com/sensible-accommodations-for-sensory-issues/
http://www.autismvox.com/the-phantom-menace/
@Hannah Zimmerman, thank you, and for the comment about the article on a previous post.
@Karen, that’s great you could get the right services, even without a diagnosis (did he have a different one)? I had a felt pennant with the overall-wearing bear — also remember Knott’s Berry Farm!
Paul Bradford
Jul 10, 2008 at 1:40 pm
@Kristina - I guess What I mean about the Dx was most of the characteristics that she has seem to be centered around sensory processing.
So here’s one of major non-autistic traits that we see:
She is ultra social. she just finished kindergarten and I think she must know every child in our schools name, because she’s greeted them at one time or another.
anyhow. I’ve been reading autismvox for about 2 weeks now and I’ve found a lot of good info in the stuff you blog about.
liquid zeolite
Jul 10, 2008 at 2:33 pm
Common sense suggests that there were autistic people 30 years ago, common sense also suggests not to the extent we have today. How much of an increase? Who knows. It also makes sense as Kristina said that kids who 10 years ago would have been diagnosed with another ailment are today being diagnosed with autism because of the service and money angle.
The more I continue to learn about Autism the more worried I am that money isn’t going to be available in 20 plus years to care for those more seriously afflicted. I feel too much money is being wasted on milder “behavior” cases that will suck the system dry for those who really need the money in the future. Then history will repeat itself (30 yrs ago when metal hospitals closed and severely mentally retarded adults kicked to the curb and left to fend for themselves) I hope not but given the facts (economic future forecasts) I don’t see how we can prevent a train wreck for the severely needy in the future.
Regan
Jul 10, 2008 at 2:56 pm
Mike,
I can’t believe I am saying this, because I halfway expect you to segue into a sales pitch, but I appreciate you considering the future needs of those who may be quite dependent on availability of decent public services.
I am old enough to vividly recall some of the fallout of program closures. Some of the facilities were truly horrific, but one issue was that the alternative replacements were not sufficiently developed or planned for. In my home state, kicked to the curb was a pretty good description. The bottom line that never seems to change is $$ and political dependencies.
Emily
Jul 10, 2008 at 3:02 pm
I think there are several reasons that it seems like there’s “more” autism:
1. transference of what would have been an MR dx to autism (TH would probably be one of these, at least in part);
2. less inclination to keep these kids “under wraps,” greater willingness to “go public” and require appropriate services and accommodations; and
3. recognition of symptoms and signs as being on the spectrum that existed before but weren’t recognized as such.
I’ve personally never met a child or adult who was diagnosed as being on the spectrum who wasn’t. The people I know are pretty clear-cut cases. That’s purely anecdotal, but in other words…in a district where people move because of the autism services it provides, I don’t run into people who just “get” the dx for reasons other than its being the genuine, accurate dx.
MomtoJBG
Jul 10, 2008 at 4:52 pm
I used to be squarely in the camp of “the increase is due to more diagnosing, not more actual cases”.
Living in this area of Texas (near tons of air pollution, and near Johnson Space Center), I personally believe there are many more cases of true autism than I could ever have imagined twenty years ago. Now, is this due to pollution, or our proximity to NASA, or some other mysterious cause?
All I know is that my sons, and an amazing number of their local peers, are “classically” autistic, not just labelled autistic to get more services.
Kristina Chew, PhD
Jul 10, 2008 at 7:25 pm
@Mike, the reference to the needs of adults with many needs is appreciated—nonetheless, I don’t know about “milder ‘behavior’ cases” taking away funding from those with “more” and “more severe needs.” As Asperger’s middle schooler who needs an aide to stay focused and stay in his neighborhood school has needs that are no less, for sure, than my son’s.
@MomtoJBG, pollution brought by NASA????…..mysteries continue….
@Paul Bradford, thanks for reading!
I think I’d read that some autistic girls don’t get diagnosed will later because they indeed are social and it’s other factors that point to an ASD diagnosis. Did you see the Nightline show on autism in girls earlier this year?
Sensory issues have seemed more and more apparent in Charlie as he’s gotten older. He’s becoming amazingly sensitive to sounds and has always been very attuned to texture, taste and smells.
My friend MothersVox does not post so much but she’s had a very interesting time figuring out what her daughter’s “actual” diagnosis is.
Regan
Jul 10, 2008 at 7:52 pm
Anecdote alert.
I have an acquaintance whose son was diagnosed with autism at a relatively late age of 4. Although he could have accessed more services he had some questions about the diagnosis and at considerable personal expense took his son out of area to one of the nation’s more expert diagnostic clinics for a several day diagnostic panel, because he said he was more interested in seeing whether this was accurate, and if it was, well okay. The assessment there was that the initial diagnosis was incorrect, and what was more correct based on observation and assessment was semantic-pragmatic language disorder. Fast forward two years, the family solely educationally targeted those specific deficit areas and his son is no longer on an IEP and was fully included at grade level. Now, if I did not know the back story, I honestly couldn’t tell him from any other 8 year old kid.
I really have no idea what “classical autism” is compared to something else. If I had to compare, Eleanor had far more visible deficit areas than the majority of classmates in her autism classroom, a few who seemed to be pretty typical until particular events, at which point they clearly stood out. I have not recently had her reevaluated so I don’t know if the original diagnosis would hold or be classified as an intellectual disability. I also have no real perspective on what her diagnosis would have been in the past given a particular DSM.
We have many, many children diagnosed in our state, but also a different and broader criteria than in the majority of states; the incidence rate reflects that. Looking at distribution, I noted once that the urban areas and especially those closest to our diagnostic centers had a higher rate than the rest of the state.
A couple of years ago I noted that the diagnosis rate and autism classification of another state seemed to have made a significant reduction in counts. I asked a special ed administrator there what he attributed this change to, expecting some feedback about success of early intervention–without much pause he stated that the state budget for special education services had taken a major cut in some categories and that had dampened some enthusiasm for diagnosis of autism and was spurring shifting of students to other categories.
Just anecdote. Clearly more children are being diagnosed than at the time Eleanor was.
MomtoJBG
Jul 10, 2008 at 10:54 pm
My earlier comment was very rushed (as this one will be, too!). By mentioning our proximity to NASA, I meant to say that I do think there’s a strong genetic element to autism. Among my husband’s colleagues there are many who fit the old “broader autism phenotype”.
I also believe that some environmental factors must be intensifying those genetic tendencies.
Joeymom
Jul 11, 2008 at 12:21 am
We are painfully aware that even ten years ago, Joey would probably have been considered mentally retarded and what that would have meant for him, and still means for children labeled “mentally retarded.”
PDD-NOS is autism, just as Asperger’s is autism, Rhett’s is autism…
I also have a son with Sensory processing disorder. I can definitely say it is markedly different from autism. The social issues, motor issues, and communication issues that my SPD child does NOT have makes a clear distinction between him and his brother. When sensory issues are recognized and addressed, Andy is fully functional and independent. Joey needs far more support, needs to be taught things that Andy “picks up.” SPD is not an “autism lite.” Instead, it is something many autistic people have, but non-autistic people can also have, just like some kids with autism have seizures, but not all kids with seizures are autistic.
Karen
Jul 11, 2008 at 12:22 pm
Kristina: Pete was undiagnosed until this past April, but he always got the services he needed. Our district, even with the dx, still gives him services based on “autistic-like behavior.” His dx didn’t change our services at all — but could get him help from the regional center in the future if need be.
I absolutely remember Knotts Berry Farm! How about Marine World when it was in Redwood City?
Kristina Chew, PhD
Jul 11, 2008 at 12:36 pm
Interesting—-Charlie started off with a diagnosis (we were then living in St. Paul and the public schools evaluated him) and that’s been the one constant in our many moves.
Been to that Marine World (and splashed by the killer whales) many a time!
LC
Jul 11, 2008 at 12:52 pm
My son has Fetal Alcohol Syndrome with all the “classic” symptoms of autism. FAS has physical traits but Fetal Alcohol Effect (FAE) doesn’t. Both effect the brain development and cause neurological discorders. I was able to get an FAS diagnosis is because my son was adopted. It’s easier for the doctor to tell me that than to a birth mother.
I wonder how many children who are affected by FAE that are not diagnosed but instead they get grouped in the autistic category.
I think it is irresponsible for doctors to tell a pregnant woman that it’s OK to have a glass of wine as each person can be effected differently by alcohol. Even the smallest amount of alcohol could be harming to the child.
Kristina Chew, PhD
Jul 11, 2008 at 12:58 pm
@LC, There was a report last year about FAS and autism.
Hope your son is doing well —-
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