Daryl Hannah?

I'm writing this just after reading this article and a few others about Daryl Hannah (article).  It's my gut reaction, so it's not polished or heavily thought out, but I felt sort of compelled to write about this while it's fresh in my mind.

What was my reaction?  First, it was, well, sort of an anger. Not anger toward Daryl Hannah, but anger at how revelations like this change people's perspective of autism, and add to what much of the public already believes---that autistic people are very bright, that they have amazing abilities, that people can be autistic and you'd never, ever know it unless they told you, that girls and women with autism in particular are on the high end of the spectrum---things like that.  And all those things might be true, for a small percentage of people out there.

And then there's Janey, and the many children and adults with autism like her, the ones on the low end of the spectrum.  They don't get the press, because they don't grow up to be celebrities, they don't have astonishing abilities, they don't get "cured".  They have a serious, at times heartbreakingly serious, lifelong disability.  Maybe I am not using the politically correct terms here, but I am speaking from the heart.  With Janey's type of autism, you would not ever be able to star in movies, to live on your own, to be politically active, to have dated JFK Jr, to be Daryl Hannah.

I am not saying Daryl Hannah isn't or wasn't autistic.  I have no reason to think she is lying, and I don't think she is, as she sees it.  But this illustrates the problem with having one word for autism, for conditions that range from nearly invisible to kids like Janey, to kids lower functioning than Janey.  It leads, I think, to a lack of services.  If the public thinks that most people with autism are able to do the things that someone like Hannah can do, they aren't going to think they need the kind of help that Janey and the other Janeys out there need.  I think that's why it's so hard to get good respite, good sheltered housing, and good recreational opportunities.  If you think people with autism are all like the ones in the public eye, you'd be justified in thinking they don't need our help that much.

Part of my mission in writing this blog is to give a little bit of a voice for Janey, and other kids with low functioning autism.  They may not be celebrities, but they are worthy of our love, our attention and our help.

Why I blog

If you search for blogs about autism, you find a very lot of them.  However, what you don't seem to find is too many about truly low-functioning autism.  There are some, and of course kids with all kinds of autism do have traits in common, and there is no real set in stone dividing line between high, medium and low functioning autism.  But the fact is I haven't found a lot of blogs about kids that function at Janey's level.  And I think I know why, at least partly.  With LFA, the narrative can get stalled.  What Janey is doing now is very similar in a lot of ways to what Janey was doing a year ago, or two years ago.  She doesn't make huge breakthroughs.  And because of her LFA, we don't do a lot of other exciting things that would spice up a blog, like taking big trips or outings.  We aren't following a radical new treatment regiment.  Janey is not suddenly picking up her iPad and writing books, and I doubt she ever will, although of course it would be wonderful.  Janey is Janey, and that's what I write about.  So why?

Well, for three reasons. 

The first is that writing is my therapy.  I'd write about Janey even if no-one was ever going to read it.  That is evidenced in  the 20 or so diaries I have around the house, which I mostly wrote in high school and college, but some as adults.  I wrote for myself, because writing is how I process things.  The day Janey was diagnosed, I started this blog, and I think I did it in blog online form mostly because I can't even read my own handwriting any more, and I wanted to type a diary.  I'd heard about blogging, and I figured I'd try it.  I didn't tell much of anyone about the blog, and I didn't promote it except in very small ways.  Gradually, it started to get read, and now, it gets read a good deal, which is amazing and wonderful to me.  But I still write in it much for myself.  When I have a tough day with Janey, or a wonderful day, my first impulse is to write about it.  

The second reason---to give Janey a voice.  I hope someday Janey will have her own voice.  I certainly follow with interest news about other people with LFA finding a way to communicate.  But in all honestly, I don't think there is a huge hidden store of deep insights that will someday make up a beautifully written book inside Janey's head.  And my point here is that that doesn't make her life, her ideas, her communication, her voice ANY less valuable.  I don't want to give her a voice to prove that she somehow has hidden stores of miraculous insights.  I want to give her a voice in a way because she doesn't---because there are lots of kids and adults like Janey out there, and their lives are valid.  They have lives that people should be able to hear about.  People can learn from Janey.  They can get insights from stories about her life into what it's like to live with a disability that affects the mind, the emotions, the ability to learn.  They can see that she can be a delight, can be amazing, just by being her.  Hopefully, people will realize that a person's worth is not measured by IQ or future earning potential, but that we all have a value.

The third reason, and probably the most important---to support other parents, and to get support from them.  I don't know how I would have lived through the last 5 years had I not met other parents with girls like Janey, had I not realized that I wasn't the only one with a child like her, had I not gotten the hope that comes from hearing there is indeed a bit of light at the end of the tunnel.  I know there are girls (and boys, but there is less out there as a support for girl) being diagnosed with autism every day, and not all of them are like one misguided book about girls on the spectrum made them seem, very verbal with unlimited futures.  The media tends to focus on girls with autism that are misdiagnosed because they seem so "normal".  But I know there are a lot of girls like Janey, that will probably never pass for what society calls normal.  And there are a lot of parents that love those girls, but are starting out on a tough journey, one filled with crying and screaming and sleepless nights and frustration.  I want to tell them I know how it feels, and I also want to give them hope---not false hope that says "one day your child will be cured, if you do everything right!" but hope that you will still have wonderful moments with your girl, that she will bring you happiness, that one day you will have a time when you think "I wouldn't want her to be anyone else"  And then she will scream all night and you will lose \that feeling for a bit, but it will come back, here and there, and that's enough.  If I can give one parent that message when they need to hear it, that's enough too.

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.