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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celebrate autism?

Tate, age 3

I just don’t get it when I hear a parent of a child with autism say they “celebrate” their autism. I have heard parents say, “I wouldn’t change anything about him.” What are they thinking? I’d change Tate in a heartbeat if I could and I have been doing everything I can since he was a toddler to minimize as many of the stereotypical behaviors of autism that I can. 

Here are my black and white thoughts…. If your child was paralyzed and you knew he’d be able to walk with a surgery or a special piece of equipment, would you say, “I accept his paralysis and will not seek help or a cure?” If your baby was born deaf, would you “celebrate” his deafness or would you seek a physician that was able to repair his ears and give him the ability to hear? There is no cure for autism but there are many ways to minimize the behaviors that will cause that child to miss out on opportunities. If you truly celebrate the child’s disability and accept it then would you be asking therapists for help, reading to find the latest research, and seeking the advice of specialists in the field of their disability? 

I met a parent many years ago that told me she had a son with autism and wouldn’t change him for anything. In the same conversation she told me about all the therapies and programs he was participating in. ???? Wait a minute? Didn’t you say, you wouldn’t change him? I’d do ANYTHING I could possibly do to give Tate a better life, a life free of autism. I’d let them take the brain from my own head and give it to him if it would mean he could live the rest of his life without autism. I do NOT celebrate autism. 

Does that mean I have less love for Tate than the parent who says they “celebrate” autism? I think not. I actually have a hard time believing that anyone really celebrates autism. I would believe they have come to ACCEPT autism, as I have, and what they celebrate is the love they have for their child. I love Tate with all my being but I HATE autism. Autism has stolen the REAL Tate from me. He will never become the person he should have been.  What? You think I have it backward? You say the Tate with autism is the impaired Tate. If he had been born blind and I found a doctor who could give him sight, would I have been wrong to do it? Would I have been a bad parent for not accepting the blindness and the “real” Tate? If a person has a life-long disability (deafness, blindness….) they learn to live with it and their parents accept it and they love that child, disabled or not. BUT, they give that child every opportunity available. They teach them sign language, how to read Braille, or anything else they need. I somehow doubt they ever celebrate the deafness or blindness. I do NOT celebrate autism. I do NOT celebrate his sensory issues and I try to help him overcome them. I do NOT celebrate his inability to communicate well and he gets lots of teaching and therapy. I do NOT celebrate his social deficits and we work on them constantly. I do NOT celebrate autism…. But I DO love Tate. Tate is a blessing to me. Autism is not a blessing for Tate or for me either. 

See this post for more about this topic: Is autism a disability?
And PLEASE, if you are an autism parent or a person with autism who feels very differently than this, read this post before you comment: What did I do to deserve this?  

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Dumb? Lazy? I Think Not.

As the whole family celebrated a college graduation at Freed Hardeman University this weekend, I was reminded of some of the things that Tate and Sydney will not be able to accomplish. At a reception for the graduates, I spoke briefly with the college president. I told him that our fourth child will be starting college in the fall of next year. Jokingly, I asked him if the fifth child would be able to attend FHU at a discount. It didn’t occur to me to even mention the sixth child or the seventh child to him. I have no real expectations or dreams of college for them. Am I giving up too easily or selling them short? Am I out of faith and hope? I don’t think so. My hopes and dreams for them are just different. I am only being realistic. I cannot afford to set the goals so high they are unachievable. My two youngest cannot keep up with their peers, through no fault of their own. We focus on learning to count coins and do simple addition and subtraction, while peers are learning about division. We focus on reading picture books and answering a few questions correctly, while peers are reading chapter books and taking much harder tests. We focus on social skills because they have to be taught systematically, and we hope and dream that some of these simple skills we are teaching will be mastered and retained. 

My oldest two have now graduated from college. They are going on to do great things. One is a minister and is very talented in the field of graphic design. One is working toward a career in the field of law. I have two who are working to become nurses and their goals are reasonable ones for them. I am very proud of them. But, am I any less proud of these two who cannot yet count change or read age appropriate literature? 

Who is it that works harder? Whose accomplishments are loftier? Is it my twenty-two year old who studied hard and graduated from college? Or was it my developmentally delayed eleven year old, who after months and months of practice, remembered to make eye contact while he told the joke he had been trying to memorize? Perhaps it was my nine year old with a learning disability who got one hundred percent on her spelling test? THOSE were amazing victories!

Tate cannot clean his room without someone helping him. It has to be broken down into small tasks and one-step directions. He cannot put his own laundry away unless it is given to him in very small amounts. Large tasks are just too overwhelming and impossible for him to tackle. Kids like Tate and Sydney are often thought of as “dumb” or even lazy. I can testify to the fact that neither of my developmentally delayed kids are dumb or lazy. They both work very hard and they both are smart. They just do not process information as quickly as we do, nor do they think the same way we do.  Recently I saw a quote that said something along these lines:  "Autism is not a processing error. Autism is a different operating system." That sums it up. 

As my heart swells with pride over the great accomplishments of my college graduates, I will also be appreciating the advances made by my youngest two children. Those gains might seem so insignificant to most people, but not to me. You see, I watch my two youngest work much harder to accomplish so much less. Almost everything comes harder to them. People with disabilities, making gains in spite of their handicaps, and overcoming their challenges daily are also worthy of celebrating. Celebrate with me.  

My two youngest, so easy to love.

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

Find me on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks!