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Hello, Pandora. What do you have in that box?
Yes, I am going to talk about…autism. The last time I did so I was inundated with people trying to convince me of the dangers of immunizations and their causal link to autism. I really, really, really don\’t want to go anywhere near that one.
No, I am not going to talk about the cause of autism; I am going to talk about my observation of the rise of the diagnosis of autism, and a plausible explanation for part, if not most of this fact. The thing that spurs me to write this post is a study by the CDC which was quoted in the NY Times:
The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders, by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.
The rise in numbers is cited as one of the main evidences for some external source – a new thing in our environment – that is causing this rise. The article, however, gives another clue:
The frequency of autism spectrum diagnoses has been increasing for decades, but researchers cannot agree on whether the trend is a result of heightened awareness, an expanding definition of the spectrum, an actual increase in incidence or some combination of those factors. Diagnosing the condition is not an exact science. Children “on the spectrum” vary widely in their abilities and symptoms, from mute and intellectually limited at one extreme to socially awkward at the other.
Children with such diagnoses often receive extensive state-financed support services — which some experts believe may have contributed to an increase in numbers.
That last sentence holds the golden ticket. What would make me think this? My experience.
I started practice in 1994, taking care of both adult and pediatric patients. At that time, autism was a sink-in-the stomach diagnosis. When I suspected autism in a child it felt the same as when I suspected cancer. The diagnosis of autism was as devastating as any diagnosis I could give, as it told many parents that their child would not ever be \”normal,\” requiring special education, visits to specialists, and a lifelong burden of care. It was a very, very big deal to diagnose a child with autism, so I didn\’t breathe the word unless I was certain of the diagnosis.
Fast forward to 2012, and an incredible change has occurred: the emergence of \”autism spectrum disorders,\” the most well-known of which is Asperger\’s syndrome. This syndrome was first described in 1944, but it wasn\’t until 1994 that it was formalized as a clinical syndrome (i.e. the big-wigs believed it was real and docs could bill for it). The emergence of these disorders made the diagnosis of autism much less scary, as many of these kids were quite functional. We would have just called them \”odd kids\” when I was young.
So why the sudden importance of a diagnosis that is basically \”sort-of autism?\” I remember when parents first came in asking me if their kids had Asperger\’s syndrome, and it took me a while to figure out why they wanted this diagnosis. The reason? To receive specialized services from the state. Teachers and parents both could get better schooling for these children who would have not thrived in the standard system, so both were motivated to want the diagnosis. What was once the equivalent of a diagnosis of cancer became a ticket to a better eduction and brighter future for the child.
Please note that I am not saying that this shift is wrong or that it is a bad thing. Early intervention does, in my opinion, help these kids immensely. I do believe it is good to taylor the education of kids to their needs, and a medical diagnosis is an easy way to accomplish this. But also note the 180-degree shift in the relationship of both parents and doctors to the diagnosis; it used to be a horrible thing, and now it is a very good thing to diagnose. I am diagnosing much more autism; but I believe this is not because I am seeing more of it, I simply have more motivation for the diagnosis and more latitude as to what that diagnosis entails.
Is this the whole reason for the increase in autism? I have no idea. I don\’t even know if my assessment that I am not seeing more autism is accurate. What I do know, however, is that a significant portion – the vast majority – of the increase in my practice is due to this change in attitude toward the diagnosis and the addition of the \”spectrum.\”
Again, I am NOT claiming anything about the validity of others\’ claims that environmental factors have a role in this. I am simply saying what I have observed and how I interpret that. I think any argument…Uh…discussion on autism has to take this into consideration.
Thanks, Pandora.
Hi Rob, I posted a link to this article at The Thinking Person’s Guide to Autism’s Facebook page. Folk often comment there rather than coming back here, so here you go:
http://www.facebook.com/thinkingpersonsguidetoautism/posts/213121325456241
I have met a number of autistic adults who were diagnosed in their 40s, 50s and even 60s. In other words, they struggled throughout most of their lives. For them, the diagnosis was a relief.
For those of us on the “spectrum” I personally feel that the testing and the guidelines are just that guidelines. Unfortunately there are no fast hard rules or tests that say yes or no… If it was a cancer diagnosis there is a clear cut line. My son is on the spectrum for a variety of reasons. I guess I am saying that if there are 16 questions on a test for autism and only 4 apply to you then you are 4/16 on the autism spectrum. If that is the only way to pinpoint a more accurate description of “on the spectrum”. As a parent of a non-verbal child with autism it is difficult to see him lumped in with children that are perfectly able to function in society with only taking a behavioral medication (say ADHD or OCD) . That seems like a misdiagnosis.
My 3 yr old was diagnosed with Autism early last year. We’ve had to fight for services through state funded programs. You’re right, it is the sinking of the stomach diagnosis. I think I cried the entire first weekend. yes, you can get programs, but it’s not as easy as it sounds. I don’t want people to think we pushed for a dignosis just to get better services. We got a diagnosis, wether we wanted it or not, because our child is non verbal, developmentally delayed, and can’t so far functionlike most kids. (And I wouldn’t trade him for anything in the wolrd!)
Danceomany – I am the mom of a kid on with Aspergers… at what you might call the “high” end – she is highly verbal and has an IQ over 140. Perfectly able to function? don’t think because she can speak and read and do geometry and discuss particle physics she is somehow not impaired. She bites her fingers and toes till they bleed. She has tantrums that last for more than an hour, at age 10. She eats only 5 or 6 food, none of them vegetables or unprocessed meats ( nuggets are OK… if they are the right kind. ) She can rarely make it through a school day without being sent to the principal – she is no longer in a public school because she truly didn’t function there, but because she is “able to access the curriculum” she was denied all services… She can not cross the street by herslef becuase she still does not comprehend that “look both ways” means with her eyes open, focusing on things coming at her, and where she is going, not on the ladybug on the curb, or the feel of the breeze from one direction… She can not bathe herslef reliably at age 10. Yes she takes medication. Without them, she is even less “functional” than this. She has cried herself to sleep more than one time, while hitting herslef in the face enough to have a black eye because she knows she is different and doesn’t get why the other girls don’t share any of her interests and don’t wnt to talk to her at lunch, or why things have to be so much harder for her every day.
I’m sure many of what we think are problems sound simple to you – but she is no more able to integrate into society like this than if she didn’t speak. I’m sorry if “lumping her in” with children like yours is problematic for you. For us, it seems only logical.
I didn’t see that comment belittling the struggle with Asperger’s, it was just bemoaning the fact that the two are different levels of need based on degree of disability (kind of the same logic that splits Asperger’s from the general population and gives them extra services). I certainly think it’s appropriate to offer extra services to kids with Asperger’s; the question is really whether the system can offer better individualized plans. Perhaps “perfectly function in society” is said out of frustration more than anything. I do know that as services like this are offered, more docs will actually be pressured into making the diagnosis in borderline cases, diluting the help that kids with significantly more need can get. I’ve seen kids with the label of “Asperger’s” who I really question. The line has to be clear.
One thing I’ve discovered over my journey of trying to get through an education with some serious neurological glitches (variously pegged as ADD, Asperger’s, LD, etc) is that oftentimes there ISN’T a clear line between those who definitely need services and those who might be able to get by without them. I was the kid who fell through the cracks because I had just enough intelligence to squeak by without failing and then fell on my face when I tried to go to college, which actually wasn’t a surprise to any of my former teachers. Then a got a dx (which is sometimes helpful and other times not), and was able to reach my true potential with a little bit of tweaking of the system and taking it at a lesser pace. Yes, our system has problems no doubt, but cognitive/developmental problems aren’t always cut and dry enough to make it a simple process for practitioners to decide who gets a dx and who doesn’t. But…if they have to pressure a doc into making a dx, that says more about the parents/school/powers that be than about the validity of a particular dx. I’ve certainly heard of cases where a dx was used in a fraudulent manner, so I can understand your hesitation. I’m sure I’d be slogging through that murkiness too had I been able to hack medical school.
Certainly a courageous post, as are most when Pandora’s box is opened. I was sent your post link by a pediatrician. She believes I am anti vaccination because I own a Direct to Consumer (wine ships direct from winery to your house) wine company called Cellar Angels and one of our charity partners (we donate 10% of net proceeds to a charity the consumer selects) is Generation Rescue. Similar to the perceived hesitancy you had in this post, we knew partnering with them and allowing our members to support them if they wish, was too a form of Pandora’s Box as GR is an apparent lightning rod of vitrolic comments (I’ve received electronic hate mail, been unliked on Facebook, unfollowed on Twitter and other ridiculous things). In all my research, video watching, interviews, etc., I’ve yet to see their “anti-vaccination” stance as many accuse. Rather, I see a very pro “parent education” stance. So please know I have no horse in this race so to speak as I help people gain access to highly prized wines, discounted for the benefit of charity.
You’ve accurately attributed several possible causes of the increase in autisim. There are undoubtedly more: diet, environment, prenatal stress, virtually anything it seems cannot be ruled out. For the parent I have unending empathy. I have met several and each is a miracle of compassion. The services available to them are few and even then “working the system” is often an unchartered process with infinite errors, poor execution and limited resources by the agencies even avaiable. There is no easy anwer. However, with the advent of ICD10 you will soon be able to diagnose well beyond the 299.00 as the autisim dx required beginning October 2013 is F84 and includes 884 Organic Disturbances & Mental Retardation as part of DRG v28.0. I also believe the push by parents to the Asperger’s Syndrome dx is understandably related to the dollars allocated to services provided by the state. Just as I also believe many of these new extensions of diagnoses available in ICD-10 will struggle as most insurance companies won’t reimburse (another Pandora’s Box). So what is a parent to do? What is a fantastic, caring, overwhlemed and under resourced family physician supposed to do? The odds are not in favor of either and unfortunately I see no near term change in this.
Lastly doctor, a state-of-the-art EMR system will allow you to immediately and with 100% accuracy know if you’ve seen a rise in the dx of autism patients through your practice. You may already have one, but the good ones are amazing. I wish you nothing but success and hope by opening this Pandora’s box you’re merely able to cast a light on a much greater challenge confronting us all regarding the treatment of this growing condition.
Cheers,
Martin Cody
To me (and on behalf of a few other current or former child-psych staffers with whom I’ve discussed this issue over the past 7-8 years), your remarks are well-considered, sensible, and – most important – sensitive to the needs of those affected by disorders in the autism spectrum. Having seen and documented some needs related to that spectrum – primarily, protection as needed for the individual so diagnosed, and support for the family/educators/caregivers – I’m deeply concerned about outcomes for all affected whose needs aren’t being met.
Like almost everyone else, I don’t have any answers. Psych-related healthcare and individualized education programs in general need both a ton of money and a deluge of dedicated staff. “From whence cometh my help?” Overall, things have come a long, long way since parents were told just to institutionalize children who deviated too much from the norm, so it seems there’s at least hope that advocacy and eventually funding will take another leap forward.
The hardest part: Like you, I’ve seen Asperger’s diagnoses that I seriously question – and have had some pressure to confirm a parent’s assessment when I felt the problem was something else altogether, even though I don’t yet have the credentials to diagnose anything. The lines can be so blurred here and can also overlap many times over. As an experienced clinician you know that, but those seeking help need to understand that an accurate assessment will be of greatest benefit over time, since there are plenty of voices already calling for more reduction of services in mental health and individualized education. Even well-intentioned tweaking of a diagnosis, if/when discovered, makes those voices more shrill, thus more effective in catching policymakers by the ear – and the cries of “we have no obligation” grow louder. Pandora’s box, definitely.
When we were going through the diagnosis process with our, now 20 year old, then 2 1/2 year old .. it was, as you said “sink in the stomach” diagnosis.Thankfully, blessedly, we had a family doctor who saw ALL diagnosis’ (whether medical, developmental or psychological) as starting places for therapies, treatments and finding the appropriate services that the child or adult may need. It wasn’t the story of the life yet to be lived, but merely a guide book of possibilities to find the best . possible outcome.
As I complete my degree in psychology and I start to deal with families who have to deal with these issues, I hope I’m able to offer the same kind of support and hope that that mentality brought to my family.
But it gives support to that last sentence you mentioned “Children with such diagnoses often receive extensive state-financed
support services — which some experts believe may have contributed to an
increase in numbers.” but those increased support services can, and often do, bring increased positive outcomes!
My wife and I have a meeting with the CSE at our daughter’s school tomorrow. She has been diagnosed with Aspergers, and has had an IEP for the last several years, which has covered OT, counseling, and test adaptations, but the school wants to declassify her because she hasn’t used OT or special ed services this year. They recommend moving to a 504 plan. She is very high functioning, but has sensory and social issues, and she’s moving from 8th grade to 9th in a much larger high school. We want to keep her IEP because she may very well need OT services again. We think the school wants to declassify her because the services are expensive.
That is the crux of your argument. Our daughter has nothing like full fledged autism, but she needs support, and we’re concerned she won’t get the same level of care if the school isn’t required to give it by an IEP.
Ugh. Politics and money.
I am glad you see what I am trying to say. I do think the resources should be there for kids who need it. My biggest beef is with the fact that educators and parents are trying to manipulate a clinical diagnosis for financial reasons. This isn’t the first time that has happened, but it is troubling as it does force me to consider non-clinical issues above the clinical realities of a condition. Given what the system is, I would recommend you fight for the IEP as much as possible.
I think this is a pretty fair assessment of why the category has exploded.
It’s kind of sad that our “standard” educational system has become so narrow and rigid that they have to throw anybody who can’t conform out for a medical label.