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Autistic, Not Autistic… who is the expert here

July 18, 2013

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I was on a bit of a high after Evie’s diagnosis came back as not autistic.   It was a relief. It was a huge guilt trip lifted off my shoulders.  I SHOULDN’T have put her in speech. I SHOULDN’T have put her in therapy.  She’s fine. I did ok. I made the right choices.   She come so far with no help.

I sent out e mails to my various support groups asking if other people had this type of thing happen.  What did it mean? How can the experts give the same test within a year and yield different results?  How could they have been wrong the first time?  I had so much stress and worry and for what?

And the emails I got back angered me.  E mails about how difficult high functioning girls are to diagnose.  E mails about how unlikely it is that my daughter ‘got better’ all by herself with no therapy within a year. ‘It doesn’t happen’ they say.   They all seemed to say the experts were wrong.  The second time.  That Evie is indeed on the spectrum.

And you wrestle with the ‘truth’. I mean, come on, get a blood test going already, doctors!  I want a scientific way to figure out if this is autism or not.  Enough with these tests that give you different results.

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I remember after the new diagnosis and thinking back to all the signs of her baby days.  The things that I said ‘I knew it’.  Those memories and moments weren’t gone. How could they point to autism and now… point to nothing.  Evie’s development WASN’T normal.   And I knew deep down. In that place that you don’t like to admit things.  That when the lady asked me ‘is this typical behavior for her?’ and I nodded my head and said emphatically yes! that I was lying.  These diagnosing things.. I know if you don’t have to go through this you don’t get it but its like a test.  Its like sitting there when your 3 year old takes a spelling test nobody asked her to study for.   You can’t help. You have to sit there and watch them pick apart your baby. Try to stick her in a box somewhere between normal and ‘needs an enormous amount of therapy for the rest of her life’. Ok not really but that’s how you see it when you’re sitting there waiting and watching.

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I’ve sat through so many of these tests that I knew exactly what the test people were looking for. I knew they were pushing her to hand flap. I knew they were pushing her to put things in her mouth and stim off certain things.  And I felt triumphant when she didn’t’ respond.   But what happened in that room. It was like a miracle or something. Because she didn’t display ‘typical’ behavior for Evie. And I lied.

While we were at the beach, Evie got so flappy she was 100x worse than Rett.  Constantly flapping her hands.  From happiness, from anxiousness.  All the time.  Things in her mouth constantly.  Making her little humming noises, acting like a puppy, ignoring other children and having little interest in them.

And you know what, I don’t care. I lied.  I probably screwed up her diagnosis. Maybe it will come back to haunt me.  Maybe not. The way I see it, if she can fool the test maybe she isn’t doing that badly regardless of what the issue is.

When I came back I contacted the lady that is helping me complete the deeming waiver and she told me that I can just ignore it. As long as I have a diagnosis, I can use that eval for 3 years.   I can still get help for her.  Then she saw their diagnosis write up and told me I can ‘maybe’ get help for her. Because she isn’t really delayed enough.  So we’ll see.  I can still get Champions for Children if she gets denied.

Evie is somewhere between a princess and a super hero.   Of that, I’m 100% certain.

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2 Comments leave one →
  1. July 18, 2013 5:07 pm

    God, I wish there is a blood test to definitely say yes or no. There’s just too many variables in diagnosing, depends on the day the child’s having…the one diagnosing…the parent’s feedback. There’s too many grey areas for the children who are not obviously autistic. Even with Dylan, some professionals say they don’t believe he has or he will be declassified and some say he is definitely on the spectrum. His speech path said he is not “autistic” but he is on the spectrum – what does that even mean??

    But it’s not clear even to me as his mom. Last night he started toe walking around, he hasn’t done that in forever. Of course, I panic. Then there are days that he is super social with others, talking clearly and getting his points across that I doubt the diagnosis.

    So again, I too wish there was a blood test that can say 100 percent if a child has autism or not.

  2. July 18, 2013 6:19 pm

    My older sister still doesn’t believe that the twins, Alanna especially, are autistic. She believes it for Travis, but is still in denial about the twins. And in the past two months, Alanna has started communicating with sign language, and has figured out the magic of eye contact in getting what she wants. I have to remind myself that girls tend to figure out the social stuff faster than boys, but that the autism is still there, and she should continue to have supports in place for dealing with it.

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