April is for Autism

My wife works with children who have autism.  She’s worked in this field for a number of years now and loves it.  She started out at a summer camp and then moved into what is called Applied Behavior Analysis and therapy.  She started out at a line therapist, working directly with the kids for multiple hours a week.

Now, she’s moved into a supervision position where she works with the therapists who work with the kids.  She helps keep their programs up-to-date and makes sure that the kids are benefiting from these therapy sessions.

Applied Behavior Analysis (ABA) is the leading form of therapy for individuals with autism.  This form of therapy can help people communicate their needs and wants when they were previously non-verbal.  It helps people learn to read, write, dress themselves, use the bathroom on their own, etc.  It’s life-changing.

It’s also not covered by every insurance company in every state and can be very expensive if people can’t afford it.  The non-profit Erin works for currently does fundraising every year to provide these services to families who can’t afford them so that they can reach and help as many kids as possible.

When it comes to autism, I usually look to her for the community’s feelings on particular subjects, and she does not like Autism Speaks.

Autism Speaks is another non-profit that funnels a lot of money into looking for a cure for autism.  They are the group behind the “Light it Up Blue” day.  They picked blue because autism is diagnosed more often in males than it is in females, so the blue represents boys.

And while that is a peeve of Erin’s, the worst part is that she absolutely hates the fact that they are researching a cure for autism and never listen to the actual autism community and people with autism when they say that working towards a cure is NOT the answer.

People with autism aren’t broken.  They aren’t sick. They don’t need to be fixed or cured.

They need love and acceptance.  They need help communicating their needs, but that doesn’t mean their inherently wrong.

One of the things that I learned in my education career is that language matters.  How you say things has an effect on those around you.

When I was first starting out as a teacher, and we would talk about genetic traits, illnesses, or disorders, I would say things like, “You either have sickle cell anemia, or you are normal.”

I would say things like, “A person can have this gene and have albinism, or they can have a different gene and be normal.”

And I learned very quickly that the word “normal” is extremely offensive and inappropriate in any community that is different.

My brother has learning disabilities.  He has moya moya, slurred speech, and other things that impact his daily life.

I would not refer to him as anything but normal.  His normal is his every day life.  Yes, he has some cognitive problems, but he’s had them since birth and it’s his normal.  I have students who have autism, and that is their normal.

Normal implies that there is something that is not normal and therefore bad.

Instead of saying normal, we need to start saying things like, “neurotypical,” “typical,” or “healthy.”

Typical implies common.  The opposite of typical is atypical, which implies uncommon.  There are typical symptoms of autism, and there are atypical symptoms of autism.  It’s not as harsh a term as “normal.”

Sometimes, I slip up, and I will say normal where I meant to say healthy or typical, and it’s generally only a problem when you are talking in the context of a person with X,Y,or Z versus someone without X,Y,or Z.

Generally, as a person with generalized anxiety, a brother who has learning disabilities, a wife who works with children who have autism, and two adopted kids on the way (one of which has experienced some pretty horrible trauma), I avoid the use of the word normal all together.

No one is normal, remember?  We’re all unique.  We’re all capable humans with a capacity for love.  We all feel pain when someone says we aren’t normal or implies that we aren’t normal.

April is for Autism Awareness, but I’m ready to move past just basic awareness and move into a place of acceptance and understanding.  Are you?

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Posted on April 4, 2016, in Life and tagged , , , , , , , . Bookmark the permalink. 2 Comments.

  1. I wanted a really touching ad for iPads, about a boy with autism, I thought it would be a sad excuse to make money but it’s not. It’s tells his story about how he had no way to communicate until he found an app on an iPad that allowed him to have a voice. If you haven’t seen it, I recommend it.

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