Monday, September 8, 2014

Should I stop calling autism a disability?

In recently months I have received three messages from people with autism asking me to stop calling autism a disability or a handicap. I’ve also been told by more than a couple parents that they would not change their child and take their autism from them if they were given the opportunity. I cannot even wrap my mind around it. My son, Tate, is 12 but functions at an intellect of about age 7.

When Tate was diagnosed I never would have dreamed there were people out there who would not mourn their child’s future the way I did when my son was diagnosed. I accept that my son has autism but I cannot rejoice in it. Autism has created obstacles and barriers that we are constantly trying to break down or find our way around. My son suffers because of his autism. He cannot communicate with us well and is often frustrated because we do not understand what he is trying to say to us.

We have done a lot of therapy to help our son and have seen great improvement in his level of functioning. I’ve since seen a tee shirt mocking the therapy we did. The quote was, “I survived ABA therapy.” My son survived it as well and without it he would have been lower functioning than he is now. 

The premise of some is that autism is not a disability but just another culture or race of people. I don’t buy into it at all. I see what the doctors at Children’s Mercy see: a neurological disorder, a disability.  

I admire Temple Grandin. A. Lot. I mean- I’m a huge fan. She says she would not flip a switch and change herself is if she could. I do not doubt her. I’m even happy for her. However, I still see autism as a disability. She had to overcome a lot of things. MOST of the people that I know in the autism community would flip that switch in a heartbeat. MOST of the people that I know with autism are not going to function at the level that Temple Grandin does.

I wonder if the people who ask me to stop calling autism a disability have ever put themselves in the shoes of someone with severe autism, or in the shoes of their caregivers. Possibly they cannot. Possibly they cannot because their empathy skills are limited or their theory of mind is almost nonexistent. Kids with autism often have self-injurious behaviors. Many are nonverbal, and do not understand their surroundings. Many are a danger to themselves. Many have to wear diapers. Many never learn to read or count. How can that NOT be a disability? The definition of a handicap is “a condition that markedly restricts a person's ability to function physically, mentally, or socially.” Sounds like autism to me.

Seen the news lately? There have been several children with autism who have wandered away and been found in bodies of water. Their mothers probably would have “flipped that switch” and eliminated their children’s autism if there had been one.

Tate, age 12
I’m not unhappy. I'm not bitter because my son was born with autism. When I'm counting my blessings though, I do not count autism. I do count Tate! We make the best of things; and we are enjoying a nice life. My son is considered high functioning. However, he DOES have a disability. While this family counts our blessings and understands we are one of the lucky ones, we still know that Tate is very limited in his abilities and his future will include a caregiver. I call that “being handicapped” and I do not believe it is anything to be ashamed of or embarrassed about. It is what it is. 

I wrote a similar post "Celebrate Autism?" in 2013.

Also by this author: "15 Truths of Parenting Special Needs Kids."

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  1. ABA is Skinnerian conditioning bordering on torture.

    My daughter's best friend, C, is on the spectrum and in the same Montessori kindy as my girl.

    If my girl wants to spend all day in the play kitchen and skip snack because she's not hungry, it's considered a personal preference.

    If C wants to spend all day in the kitchen / skip snack, he's considered non-compliant.

    The ABA. Oh, the ABA. Poor C is subjected to hours of it at school each day

    All I will say about that is if you tried to make my kid sit in a chair abs touch her nose in exchange for a skittle, she'd probably do it a few times and wander off when she got bored. Force her to do it 20x more? Try to stop her leaving before she does so? Epic tantrum. She might even shove you out of the way.

    C's a sweet kid and his aggression, as far as I can tell, is warranted -- and worsens by ABA.

    1. Wow. I will let my son's therapist and his team know that we are not using research based best practice therapy but only torture. I will also make sure my son knows that the progress he has made and the skills he has acquired should be forgotten because we have upset one of my readers by using ABA. My son does not have aggression and never has. He enjoyed the discrete trial and the rewards, although we did not use Skittles. He does not like them. Based on my first hand experience and your second hand experience through your child's friend I definitely think you know more about this subject than I do. I will take all your advice into consideration.

      Why are you reading? Based on the two harsh comments you have made I cannot imagine that you want to keep visiting this blog. Lisa

  2. Technically I do not think of it as a disability. I refuse to even think it exists. No one really knows what it actually is so how can they just invent it. I find it an insult in a way. Everyone has symptoms in some sort of a way. Therefore I think it is more "a different personality. You can't just label people because of behaviour.

    I think with Tate he is just developing at his own pace. He is just a boy who just needs extra support with understanding this world. We all needed that. Tate just needs more

    1. That´s stupid, forgive me, I don´t usually use insults in the comment section, I think that´s just primitive, but I could not find a better adjective. As a matter of fact, you CAN label people by their behaviors, that´s acutally the basis of psychology. How do you think they label psycopaths, sociopaths, etc? So, "invisible", mental handicaps suddenly don´t exist? Under your logic, depression, anxiety, and so many many others don´t exist... How am I supposed to find help if my depression or anxiety are just a product of my imagination? So yeah, stupid.

  3. You should be allowed to feel and say whatever it is you want. You aren't going around telling people to stop calling "housework" HOUSEPLAY because you may like doing it. Everyone just needs to beat to their own drummer and stop forcing THEIR beliefs and will on others (who never ASKED them in the first place)!

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  5. My grandson is on the spectrum and I thank you for your blog. Very helpful information! My grandson is an amazing and sweet little boy and he is developing but with very delayed speech and some other behavior issues. But he is living a happy life BUT I agree that Autism can be considered a disability depending on where a child falls on the spectrum. According to definition of "disability" I would say more times that not it fits the description. If I had a choice, my grandson would not be autistic but I love him the same. I love him, not the autism.

    1. This is how I feel too. I was told today by an adult with autism who is very offended by my blog, that autism and the person cannot be seen as two different things so if I do not like the autism then I do not like my son. ARGH! It is so frustrating that some do not understand that autism is a disability that my son has, like epilepsy or blindness or any other disability.