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Friday, October 17, 2014

"But there are so many programs out there!"

So often lately, I hear about a new great program for kids with autism.  Sometimes, I hear about it in the news, or someone tells me about it, or I dig it up with some research.  Often, I get very excited about the idea of the program, until I look at the fine print or try to apply, and then find that Janey isn't eligible.  This is not something that just affects Janey.  Autism covers a HUGE range of behaviors and abilities.  Saying that a program is for children on the autistic spectrum pretty much says nothing.  It's the fine print that figures out WHICH children the program is for.  But the general public would certainly be excused in thinking that any parent of an autistic child could pick and choose from tons of exciting opportunities.  

I want to emphasize I know how lucky I am to be living in the time and place I am.  There ARE opportunities for Janey.  She goes to a school program designed especially for children like her.  She gets speech therapy, occupational therapy, swimming lessons, music therapy and more---all at school.  She has a terrific teacher.  Last summer, she went to a camp that I can never, ever say enough about---Camp Fatima---a dream camp.  I am grateful for all the help Janey gets.  And many of the other programs we aren't eligible for, I might not want for Janey anyway.  But I just wanted to illustrate that just because you hear of a program for children with autism, it doesn't mean that ALL children with autism can participate.  Here's two examples---

The Boston Conservatory has a program that gives lessons in music instruments or voice to children on the autistic spectrum.  The program sounds incredible---read about it here--and I eagerly went to their FAQ page to see if Janey would be able to access it.  Well, this line stopped me cold "Yes, students must already possess basic proficiency (i.e. can play without hand over hand instruction) in their instrument" ,written as an answer to whether the children had to have prior experience.  So, basically, this wonderful program is available only to kids on the autistic spectrum who have already had lessons---kids high functioning enough to have been able to be taught the basics of their chosen music area already.  And they must have been able to do on in regular classes, as the page says this new program is the only of its kind in the country.  It also costs $1000, which isn't so much the issue---not that we have a thousand dollars lying around to spare, but if the program was open to Janey, I would brave hell or high water to find that money somehow.  But---it isn't.

And here's one where Janey was too HIGH functioning.  I heard about a study being conducted here in Boston to help children with autism acquire language, using new techniques (read about it here).  I registered to be considered for the program, and got a call yesterday from a very nice woman who told me all about the program, which sounded wonderful---very intensive and innovative.  I kind of had a suspicion here that Janey would not qualify, though.  The program is for children called "minimally verbal"  I would consider Janey to be minimally verbal, in that she doesn't talk except for simple requests or echolalia, with very rare exceptions, but I do know that that is much more verbal than many kids with autism (and I know how lucky I am that Janey does talk that much)  And indeed, once we were screened, the researcher told me that Janey has too much speech to be included in the study.  I respect that.  It's a scientific study, and she doesn't meet the guidelines.  But I still felt disappointed.  Seven years of speech therapy have not significantly improved Janey's speech, and I would love to have a chance to try something new to help expand her talking.

I could give a lot more examples here, but these two illustrate what I mean pretty well.  I know there are programs which Janey would be right for and other autistic children would not.  But for someone without knowledge of the nuances of autism, it might seem that there are far more opportunities out there than there really are.  That's why it's so crucial that organizations that support autism put their funds into DIRECT SERVICES---not some vague "awareness" campaign or research that might possible help some theoretical child 10 years in the future.  We need help NOW.

2 comments:

David Fee said...

I don't think private organizations could possibly afford to provide direct services. It would have to be organization with very deep pockets. Even research on autism at NIH is way down on the list of priorities. I heard this before as families get into a lifeboat mentality where they want to shove off those that are seen as draining limited resources. People really believe if one organization in particular went away they could divide up the "windfall" but it would a small payout like a class action lawsuit. The public really isn't going to see the problem until large numbers kids grow into adults and parents get too old to act as caregivers.

Angel The Alien said...

Even as an adult I am experiencing this type of thing... I have trouble doing things that typical adults can easily do, yet I don't qualify for many services and programs because I'm too "high functioning." Sometimes being "high functioning" is even harder because you have nobody looking out for you... people expect you to be fine, and to need nothing.