Friday, December 18, 2009

1 in 110

The CDC issued a statement today summarizing its current findings that the frequency of autism has increased 57% in the last 3-7 years. Almost 1% (1 in 110) of children have some form of autism. For boys the risk is even greater, 1 in 70. For those who claim we are just diagnosing autism more than we used to, the report addresses that question and finds that argument can not fully explain the dramatic increase. One of the key concerns is that children are still being diagnosed too late to benefit from early intervention therapies. The average age of diagnosis is 53 months. Ideally children should be diagnosed by 24 months to fully benefit from therapeutic strategies.

I'm sure I could go on and find other disorders and diseases to compare rates with, but:
  • I don't particularly want to get into an "us vs. them" stance here. It's not that I feel autism is more important than these other medical issues (Leukemia, after all can be fatal...)
  • I don't really want to make it into a numbers game.

I do have two objectives in mind in highlighting this news story:
  • First, although the rate of occurrence of autism is so high, by and large people do not realize how increasingly common it is. I recall having a conversation with a friend who is thinking about starting a family rather later than usual and one of her main concerns with the increase in Down Syndrome among mothers over the age of 35. When I pointed out the statistics of Down's being 1 in 800 versus autism being 1 in 150 (this was several months ago) she was surprised at the latter. Just remember 1%. Theoretically when looking at a group of 100 children, chances are one of them has some form of autism.
  • Second, although the rate of occurrence of autism is so high, most people do not know what it looks like or what it means. Part of this is because each person with autism is uniquely affected by the disorder, so our usual attempts to put people into neat little pigeon holes doesn't work very well. However, in my opinion the other reason we don't recognize it (and I think it leads to later diagnoses) is because we have over-simplified it a bit. Everyone knows "the signs": child doesn't smile, doesn't babble, doesn't interact, bangs head/flaps hands, etc. The truth is it doesn't always look like this. I like to look at four developmental areas related to autism:

1) Language delay, sometimes with echolalia – sometimes
language delay occurs for other reasons, but especially if it occurs with echolalia there is cause for concern. (Can be observed as early as 18 months)
2) Sensory integration – overly strong or weak reactions to visual, aural, oral, tactile, olfactory or movement stimulation, and/or difficulty manipulating one’s own body. (Can be observed as early as 2-10 months)
3) Perseverative Play – Playing with toys in strange ways and (sometimes) for long periods of time. Spinning, lining toys up, looking at things from a funny angle, banging or throwing. (Can be observed as early as 9 months)
4) Social interactions – Difficulty learning the invisible rules of social interaction. Please note that many people with autism enjoy being around other people, and in fact in some cases overly depend on the stimulation that attention from peers and authority figures provides. Just because they enjoy being around people does not mean that they understand easily how to interact with others, especially peers. Subtle complexities of sharing, waiting for a turn, using words to say what you want, and asking for help when a mistake or problem arises, must be explicitly taught and not just learned through the usual school of hard knocks. Most of this is hard to
observe until age 3-4 years when children begin to spend more time in social settings with peers unaided by parents.

In my opinion if a parent asks a doctor about any one of these areas of development, the doctor should ask about the other three, and if there is reason for the doctor to be concerned about two or more of these areas then a referal to a specialist should be written. In particular, the first three categories which are easier to see in a younger child should be highlighted in any developmental screening performed by a doctor.

Sadly, the increase in autism can be greatly misunderstood as well. I believe this article may be an example of this, but I'll let you be the judge.

This is a much longer post than usual, and I'm not sure I've even scratched the surface of what I wanted to say on the subject, but that number 1 in 110 is heavy on my mind. I hope by reading this you will also become more aware of the challenge we all face in that statistic.

1 comment:

Janet Ann Collins said...

This is a great post. One of the clearest descriptions of autism I've seen.


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