People think they know autism when they see it? NOT

Something that has been bothering me for a while is someone who visited my family a while back & spent maybe an hour or two. This person told another friend my daughter was not on spectrum. Now this person has never up till that day spent time with my daughter. As far as I know she knows nothing of kids on the high end of the spectrum. Every individual with Autism is unique.  No two diagnoses are the same.  Just like each person has a different personality, each person has a different level of Autism.  Yet she is an expert & is now telling others that I am making up my daughters autism?

 

Why would someone make that up?

If she were not on spectrum why do I have a 2 binders 3 inches thick full of reports, assessments and doctors reports about her disability?

How could I manage to get services from a school district & have her go to a special pre-school for mild to moderate autistic kids for two years?

Then have her in a similar classroom for kindergarten?

School districts are stingy about who they give services too and unless your child has a definite disability you do not get anything.

 

I guess this person’s argument was my PA did not look or act like she was autistic.

 

So I ask you:

  1. What does an autistic kid” look” or “act” like?
  2. Can they never behave and seem “normal”?
    1. From what I remember on this day PA was stimming really bad. This person had made mention she was “just hyper.” Really? I have never seen an NT child stim because they were hyper.

 

My daughter can usually behave for company fairly well.  Really the only clues would be her stimming. Even with company she can manage some eye contact for short period of time. People who do not understand autism may think she is “normal” maybe just a little high-strung. However unless you see her on a regular basis spend a little time with her, maybe encounter her in an unfamiliar setting you will not see what we see & deal with.

 

What I would like to say to someone; who either does not believe me or doubts how it really affects us; is unless you have walked in my shoes, spent the time to get to know my girls & family; unless you have spent more than an hour or two and seen PA at her best, worst & everything in between, you have no right judging me or making a call on my child’s diagnosis.

 

In case you are curious her official diagnosis is PDD-NOS (pervasive developmental disorder not other wise specified) with SPD (sensory processing disorder), severe food aversions, epilepsy, hypertonia & chronic constipation & GI distress. PDD-NOS is on spectrum. This diagnosis may be on the high end of spectrum but it is still ON SPECTRUM.

 

Judge not, lest ye be judged.

  • http://gretchenleary.com Gretchen Leary

    It can be hard for people to believe things they can not see and to rationalize that they have it harder than someone else. It’s more natural than the other way around. Lots of people have told me I seem “nothing like someone with Aspergers” but when I simply ask who they know with it, they have one person to compare at best usually and its often a Hollywood created character. I don’t get it either. I think people have a tendency to judge without knowing it. Sorry you went through this. It’s natural to want to protect your child and your integrity- have you spoken to the person in question. Is it possible that the version you received was misinterpreted? Hang in there.

    • http://danidawn danidawn

      I have not spoken with this person yet, but she voiced her opinion with me about my daughter before and I thought I had made her understand. This came from a good friend with SN kids & she was shocked to hear this other person saying this about me. I decided to make it look like it could be anyone because in reality this has happened before but this is the first time I was able to write it out. You are right in what you said unless people are around it they really will not understand, but darn it I wish they would not be so judgmental.

      • http://gretchenleary.com Gretchen Leary

        Me too. Sorry for the typo in my original comment. It was supposed to say “…easier than someone else” not “harder” I confused my thought mid sentence there. Well, I would try to not let it bother you if you can. If it were me, I would probably gently pull them aside and explain that what was said was hurtful and judge mental but I am not a good source of friendship advice to say the least. Hugs!

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