The words over diagnosed have come up a lot the last few
days in regard to autism and when I see it I tend to feel a little opposition.
Many people will say autism is the new ADD or kids are getting diagnosed who
shouldn’t be. Some will even say some kids don’t deserve a diagnosis which one
of the strangest comments I have ever come across. These comments come from all
kinds of people and some are autism parents, some are not.
The
word autism came up out loud by our physician when Phillip was two. The word
autism came up in my mind months before that. I knew we had something happen to
our son and I also knew what it was but I didn’t say it out loud and neither did
anyone else. What I did was fight to get his attention, say his name repeatedly
without any kind of reaction, and watch him stop using his motor skills to do
simple tasks like eating with a spoon. I watched him go into meltdowns and consistently
wander off and I watched him stop doing the things he knew how to do before
those months hit. Leading us to the word
coming out of our physician’s mouth and the suggestion autism was present.
The first
time it was mentioned we had an advocate come to our home and although she
encouraged us to get a diagnosis we held off. We had that little thought that
he would come out of it and just bounce right back. Only what really happened was
the struggled became more powerful and progress didn’t happen at all. By
waiting we sat in limbo not totally understanding why but just avoiding what
was right in front of us. During that time I also made up my mind he was going
in for that diagnosis no matter who didn’t agree with me. I couldn’t do anything
for him and the forces around us were still handling difficult situations like
he was not autistic. Like he was just waiting to catch up or stubborn and would
come out of it.
Four
therapists for two hours tested him and they recorded it so when the testing was
over they could watch it again together and discuss his behaviors. Two hours
after that we had our diagnosis and went home. It was a hard day and a life
changing one but one thing I remember about that day was a bit of relief. Why
would I feel relieved to have an autism diagnosis? Because it gave us answers
and a way to get him what he needed to move forward. It also gave me a way to
help others understand him without the argument that he was just holding back.
It was real, it was on paper, it was verified, and it was clear. Now we could
tackle situations with autism in mind as we should have been before the word
was spoken.
When I
see comments that say over diagnosed, misdiagnosed, it’s the new ADD, and the
list goes on, I think about parents who are in the shoes we were in. I think about
a day I went into the bathroom and locked the door to sit on the floor and cry
my eyes out because I was pushing through days struggling to know what to do. I
was questioning my ability to parent and know my child and it hurt. It hurt
every time I tried to help him and no one could see he was in fact different
and it hurt when someone would say he just doesn’t feel like it because I knew
better. It hurt when people would talk to him and he didn’t know they were even
standing there and it hurt when he was screaming from being so overwhelmed he
was stuck in a frightening place in his mind. The daily struggle from not
having that answer was horrible to live with. No one wants to receive an autism
diagnosis and no one seeks that for their child. In fact many people put it off
because they don’t want it. It’s very surprising to me that some people refuse to
see that and send a message to parents stuck in limbo that they just need to
stay on the bathroom floor crying. When what they really need is someone to
pick them up and say, it’s ok. Your child is not the new ADD, part of some weird
trend, or a case of medical mistaken identity. What they just might need is to
hear your child has autism. Now let’s do things differently and cry less.
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