Sunday, August 09, 2009

Paranoid Parents

A lot of people lately have been saying that our society has been diagnosing too many minor developmental quirks as disabilities, that we're overpathologizing children. For the most part, I've been disagreeing vocally - after all, I'm a person who would not have been diagnosed as autistic in the past, but who has been helped by being diagnosed autistic. In large part because I've found my people, and the reason I feel so different from most people. And then there's the meltdowns, the sensory overload and the organizational issues, which have been helped by trying to accomodate my autism.
But in working as a volunteer expert on AllExperts.com, I've seen another side of it. This question is a good example - a mother of a sociable 2 year old who uses a few single words, and she thinks he might be autistic. Autistic! He's not even language delayed, and his language is the only area she's really concerned about. I've gotten several questions like that - parents worried that their 15 month olds aren't talking yet or their 2 year old don't talk very much, and they immediately jump to worrying about autism. I even had someone ask me if her 2 month old was autistic!
I started out thinking that if parents think their children are different, they probably are. Now, I understand exactly why so many doctors dismiss parents' concerns - because they really are overreacting! What is going on here? Clearly, something is wrong about parents scrutinizing tiny children so intensely for signs of something wrong!
This doesn't happen with gifted children, by the way. I get plenty of parents asking me if their children are gifted, because I'm an expert in giftedness as well as autism. Most of these parents are more towards the extreme of being uncertain about obviously gifted kids, such as a kid who was reciting the alphabet at 18 months. It's only when they think it's something bad that they overinterpret minor variations - when it's something good, they need to be told about the most obvious examples. I bet there are far more gifted kids whose parents don't think they're gifted than the other way around. The exact opposite is true for autism.

5 Comments:

Blogger Maya M said...

I think this is normal. Today's Western families are small, people have few opportunities to observe developing children, so new parents have little idea what typical development is like. At the same time, they are constantly told that if development isn't quite typical, they have to start therapies on day 1 or else windows of opportunity will close. It is of course true that some disabled children benefit from early therapies, but this droplet of truth has grown into a brainwashing fall.

1:43 AM  
Blogger Andrea Shettle, MSW said...

I think the problem of under diagnosis and over diagnosis exists in both directions.

On one hand, you have over-anxious parents pushing for a diagnosis where one maybe isn't really needed (or maybe one is, but not the specific label they're thinking of). And sometimes there are doctors ready to give out these diagnoses when maybe they aren't entirely appropriate. Perhaps because they think their diagnosis skills are so superior they only need 20-30 minutes to diagnose someone (without considering that a rapid diagnosis is not necessarily a sign of a more accurate or better diagnosis, just an impatient one). Or because the parents insist on finding something and they want to comply.

And then you have parents in denial, who never come to you or whoever else to ask questions because they're so convinced that all or most labels are just signs of over-anxious parents or careless specialists etc that they overlook obvious signs that something is different in their child. And there are professionals, too, who so adamantly insist that the mere act of diagnosis is automatically so bad and harmful that they just won't give a diagnostic label unless the condition in question drops a ton of bricks on their head and beats them with it.

Both over diagnosis and under diagnosis can be problematic, just in different ways. And just because some children may be over-diagnosed (ie, diagnosed with a label that isn't appropriate, or that over-reacts to normal variations in development etc) doesn't mean that there aren't ALSO, SIMULTANEOUSLY, OTHER children being UNDER diagnosed (ie, having real problems be overlooked or denied).

And ditto for vice versa: just because some children are being under diagnosed doesn't mean that there aren't ALSO, SIMULTANEOUSLY other children being over diagnosed.

What Maya M says also makes sense to me. 100+ years ago (and still today in some societies), parents were more likely to have grown up with younger siblings at home (having had larger families). And if they didn't have younger siblings (for example, because they might have been the "baby" of the family) they were still more likely to be living very close to most of their aunts, uncles, grandparents, cousins etc -- including perhaps younger cousins. Or at the very least, some of their friends might have had younger children. Not like today when parents grew up with far fewer siblings AND far fewer cousins AND fewer young neighbors and siblings of friends, etc.

And even on the small chance that you really did grow up without seeing a lot of models of typical childhood development, chances are your own parents would still be living close by when you started raising children of your own, so the grandparents could help soothe overanxious fears before they ever got to the doctor's, or else they could point out potential problems before the parents understood what they were looking at. Compared to today where parents are more likely to be living far away from where the grandparents live, so it's harder for the grandparents to pick up on things.

4:28 AM  
Blogger Roger Kulp said...

I wonder if part of the problem here,is there is "too much" autism awareness out there nowadays.I am sure someone may see this,and repost it in the comment section of another blog,but for good or bad,I was not diagnosed with formal "autism",until I was an adult.What I did have as a child,was a long list of comorbid diagnoses of developmental,motor, sensory,and learning disabilities,as well as a couple of behavioral,and psychiatric ones tossed in too.At one point, after the DSM III came out,I saw some especially bright doctor,who thought it would be wise to combine as much of this as I could,into an autism diagnosis.

You can't deny it is a good thing,that there are no more children anymore in this situation.

It was,what,the 1990s before most children were even considered to be evaluated for autism before they started school ?Before that most children didn't even begin to get any help before then,and most certainly were considered to be autistic,even if they were.Autism meant one thing,intellectual disability,and being nonverbal.If you weren't this,you usually couldnt get this diagnosis,or the right services.

11:43 AM  
Blogger Lindsay said...

I feel similarly conflicted about this, because I do share your belief that early identification of real differences and special needs can be very helpful.

I *WAS* diagnosed autistic early on, and it was a big help. But I think much of what you're running into on AllExperts isn't about trying to figure out what the child needs, or how hir mind and senses work, as much as it is anxiety about whether the child is normal. I think lots of people think of "health" or "normalcy" as being the absence of any of the items on some vast (and ever-expanding) list of Everything That Can Possibly Go Wrong --- so, rather than look to see if their child is thriving, they might instead look for signs of any of the umpteen billion subtle diseases and disorders in their child's manner or behavior.

Maya M, you raise a good point about small families --- one thing having more than one child tells you is that healthy children can differ pretty markedly from one another.

(I was the first of three, with my mother being second of three, and spent most of my childhood a block away from my grandparents. My mother was also a nurse, and had studied child development to an extent. She tells me she thought I was clearly different from birth, though the first time she raised that idea with the pediatrician he dismissed it).

Back to Ettina's points: I also think you're right about giftedness --- most people don't know much about child development, and tend to expect kids to be able to do more at younger ages than most kids can.

(My partner, at age two, was sitting on a train once with his mother. He was quietly reading a book. A woman walked past them and was astonished --- she said to my partner's mother "Do you know what that boy is doing?", to which his mother said, "Yeah, he's reading. So what?" The other woman was a teacher, so she knew how odd it was for a two-year-old to be reading, but my partner's mother thought nothing of it).

12:48 PM  
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10:01 PM  

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