Wednesday, March 20, 2013

Low Functioning Autism and the 1 in 50

Low Functioning Autism (which is often abbreviated LFA) isn't a pretty term.  I guess there are others that can be used, like classic autism or Kanner's autism.  I've also heard non-verbal autism used as a synonym, but I don't like that, as Janey is low functioning but does speak, although not really often meaningfully.  LFA is also a hard term to find a definition of.  I was trying, just now, and couldn't find a hard and fast one.  Sometimes IQ seems to be the criteria used, with an IQ under a level I saw quoted as 80 in one place and 70 in another as the cut-off.  It seems like LFA is one of those things you know when you see.

And why am I thinking about this today?  Mainly because of the statistic of the day---that now it's said that one in 50 school children in the US have an autistic disorder.  Frankly, honestly, that statistic annoyed me.  It annoyed me because it seems it must use a hugely wide net when saying exactly what an autistic disorder is.  It just doesn't make sense.  Janey goes to a school that is an inclusion school, and each classroom has some children with disabilities.  Her school might be one of the rare ones where that one in 50 makes sense, for that reason.  But although of course I don't know official diagnoses of other kids, I can say just from being around the school that Janey is lower functioning than most any other kid with autism there, and that some of the kids I know are considered on the spectrum can do things that I doubt Janey will ever come close to doing---writing well, doing advanced math, talking in conversations---things like that.  Someone without knowledge of the huge range that autism encompasses will not understand that statistic.  They might think all kids with autism are what would be called high functioning, and think it's just a fashionable thing to have your child called, to get them a little extra help.  Or they might think all the kids are like Janey, in which case you would think there would be widespread alarm.  If one if 50 kids were like Janey---well, our special ed systems would be completely and totally overwhelmed.  All I can imagine that must be meant by the one in 50 statistic is that one in 50 children at some point in their life showed some autistic characteristics.  In fact, I'm pretty sure that somehow my older son, who has not been on an IEP for 8 years and who has already been accepted at 5 colleges, including Brandeis, is considered one of those 50.  The differences between Janey and him are so vast that to include both of them in that statistic makes the statistic pretty much meaningless.

I tried to find a statistic on how many children have LFA.  I couldn't.  I think that would be a very useful number for the government to have, in order to plan for the future.  Many of the kids in that 1 in 50 are not going to require lifetime care.  But the ones with LFA are, barring the extremely rare "cures" and miracles.  I think part of the reason there aren't more numbers and isn't more information out there about LFA is that it is far less studied than HFA.  It's hard to study Janey.  She's not going to answer your questions or cooperate with tests or refrain from freaking out if you want to do something like an MRI with her.  The one study I enrolled her in was a bit of a disaster, as when they tried to test her, the testers seems stunned by the reality of her.  They essentially gave up on testing her half way through.  I'm sure that's not an uncommon outcome.  It's a lot more interesting to test quirky verbal kids, I'm sure, than kids who scream and don't answer and aren't at all with the program.

Here's how I'd define LFA.  Please note this is only my own idea of a definition, not anything official!

Kids with LFA either don't speak or they speak mainly in echolalia or with simple, scripted requests.  They are not able to learn academically without a huge amount of help and support, and even with that, they will never be able to access a regular curriculum.  They require around the clock care, and must always be under supervision, as they do not understand basic safely protocol.  They have limited self-help skills.  They often have trouble regulating their emotions, and may cry or laugh for no obvious reason.  Their range of interests is very limited.  It is extremely unlikely they will ever be able to live on their own.

If that sounds pretty grim, well, it is.  I didn't sugarcoat it.  There is not room there for the good parts, although every child in the world, including those with LFA, has good parts!  But I think it's important, crucially important, for people to understand the challenges of being a family with a child with LFA.  Autism casts a wide net.  Today's statistic proves that.  But I'm starting to think having that wide a net is not serving the needs of those under the net.


mknecht24 said...

I hate the statistics because they don't seem to affect any change whatsoever. 1 in 50 should have us running for the hills in terror. I agree that the term "autism" is too broad. The symptoms are so varied from person to person that it doesn't make sense to call it by one name. I think the LFAs are swept to the side as hopeless cases or in the very least, minimally maintained. People want to hear about the Temple Grandins of the world. They don't want to think about the kids covered in "chocolate". haha I can hardly wait for Autism Awareness Month.

Mary Leonhardt said...

A really interesting aspect of the one in fifty study out. I don't think most people have thought of the problems that such a wide diagnose of spectrum disorders could cause for the low functioning kids.

I'm going to post a comment about your blog on mine, to help get the word out.

Sophie's Trains said...

I had a comment written but it got deleted for some reason.

I think the statistics are kind of ridiculous frankly. I remember when I was pregnant for the first time and read that for a woman over 40 (I wasn't about half that) the risk of Down's syndrome was 1 in 400. And it was considered a high risk. And now, the risk to any woman, no matter the age, to have an autistic child is 1 in 50? And no one is, as the first poster said, running for the hills?

On the other hand, in the playgroup I go to, the statistics seem pretty accurate. If that is because those moms are making more of an effort to socialize their kids or if that is the actual representation of society, I don't know.

I do agree that the spectrum is too broad to get a clear picture of what is really going on.