Wednesday, 8 May 2013

Took Longer Than I Thought

For me to burst into tears after today's assessments.  We did this study for the greater good- to benefit autism research.  There was no "personal" benefit for our family other than some financial compensation, which, while nice, was not reason enough to endure the things we have throughout the SEED study.  I have been at it for about a year now with this study.  I have done about 4 phone interviews and filled out countless surveys and sent them in.  Today was the final step- assessments for Nathan and lab work for him, me and John.  The lab work was the least painful part to be completely honest. 

There were about 2 hours of assessments for Nate and about 3 hours of "interviews" for mommy.  Daddy stayed with Nate during the assessments, so I don't know for sure how he was acting while they were trying to work with him.  It seems that he had a very stimmy day and they couldn't get much out of him.  This isn't really surprising- most kids don't perform to their potential in unfamiliar environments, and this is especially true when the child has autism.  And these people, never having met Nate, do not know his particular "catch phrases" (things that get his attention) or the best way to approach things with them.  I am beginning to realize that standardized testing in children on the spectrum is a joke.  Isn't the whole point that it's a spectrum and that these kids do not respond in typical ways?  The typical testing isn't going to show what Nate can do.  Or that's what I tell myself, and what I need to believe, especially today.

The interview was BRUTAL.  I mean, "does Nate look at you when you walk in the room?" "how about other people he knows?" "how about strangers"  "how about when he was 16 months old?".  That is just a BRIEF sampling.  For three hours.  Does he jump?  Does he hop?  How is his gait when he runs?  Does he hold a spoon "appropriately?"  Well the food almost always ends up in his mouth.  Almost every social and developmental scenario you can think of was addressed.  My brain literally hurt when it was over.  And also, I was extremely depressed.

When they reviewed the results, we got the same sympathetic look as always before the examiner started.  I even told her, "hey it's ok, we're used to this by now."  Think again.  They assessed that Nate has regressed by 4 months since his last assessment 6 months ago.  I'm sorry, but I really don't think so.  I mean, I don't THINK so.  Then I start second guessing myself.  Is he doing worse?  Because saying he regressed 4 months in the last 6 actually indicates 10 months of loss if you see where I am going with that.  Because he should have gained 6 months in 6 months right?  But if they are saying he lost 4.....

I called my mommy- what else is a girl to do? She called bull pucky.  And I think I agree.  I think that the testing environment severely affects a child with autism, as does the identity of the tester.  I think that his teachers in his school know better when to persevere and when he truly can't do something.  And I need to try and keep that in mind.  This just left a really bad taste in my mouth....

The greater good is great, but our good is important too.  I am taking a break from "extra" assessments for my kids for awhile unless there is some true benefit for them- like therapy or a medicine.  This whole, "yep, your kid still has moderate to severe autism" thing really wears on you, you know? 

1 comment:

  1. I used to join a lot of studies. I believe in medical research, and living in Boston, there were lots of studies to join. But I then realized the same thing you did---that standardized tests on kids on the autistic spectrum are a joke. How in the world can someone who doesn't even know your child possibly in a short time get an accurate view of someone with quirky autistic traits? My older son, who was thought to be in the spectrum when he was young, was tested over and over and shown to be in the low normal IQ range. That's something I'd be thrilled if Janey showed, but I knew it wasn't the case for him. And next month he graduates as valedictorian from high school and is going to a very good college. I wish sometimes I could go back and say something to those testers.