I believe in autism. I believe that so many families battle autism like warriors. I believe autism can be masked and I believe that autism can be hidden.
I do not think autism can be cured and question that it should be.
Autism makes a person unique just as my curly hair makes me Kerri. I have Bridget in a lot of therapies. A lot. She is in an integrated classroom, receives a variation of ABA/discrete trial for 16 hours in school and then goes to her second home the Pedi Center. At the Pedi Center she receives weekly speech, occupational and physical therapy.
Bridget works REALLY hard at being Bridget.
With all the therapy I subject Bridget to she thrives. Yet I know the work will not cure her. It simply cannot. Not just autism but her intellectual disability, her SPD, etc… all get more manageable with therapy and increase her potential.
Yet it will not cure her.
I cannot prescribe to the belief that children are “cured” or “out grow” autism. That is like saying I outgrew the love of M&M’s. Not going to happen. Autism is not cancer. It does not go into remission. It can not be cut out like a tumor. What I believe is that children conform to society. If they are repeatedly told not to pick their nose, eventually they stop.
A child with autism doesn’t just stop having autism. They learn to conform into what society (and their families) perceive as normal or acceptable “quirks” if they have the ability. People want to conform. They want to be part of the in-crowd, they want to be skinny or athletic or insert your self-esteem issue here. Why would a person with autism be any different?
Last month Unstrange Mind wrote their perspective of Applied Behavior Analysis (ABA) therapies. ABA is the most common treatment/therapy for children with autism. My unqualified (and untrained) explanation is that the therapist (and parent) works to figure out what the person desires and uses that desire as a tool to correct unwanted behavior. For example, Bridget loves Sofia the First. She will “work” for a sticker. If they want her to complete her work a promise of the sticker elicits the behavior/task they want her to perform. There are a lot of positive and negative stories regarding it’s use, dependent on your view. As Unstrange mind objectively wrote, Bridget may feel: I have to look at my mother and say I love you or I don’t get Sofia. I feel: she said I love you!
There are huge benefits of ABA therapy. People become safer, they learn not to put their hand on a hot stove because they will be burnt. The person has not been cured they have adapted their behavior that seems perfectly normal to them to what society deems appropriate.
Basically they are not touching the hot stove.
They still want to, though.
I understand a parent looking at ASD and thinking NO. I want it gone like cancer. Cut it out, eradicate it. That their child is battling ASD. I get it. I’m lucky with Bridget. Oh so lucky compared to some. What Bridget struggles with is so different than the child in the seat next to her. Yet she struggles.
No therapy is going to take away her feeling of wanting to pull her hair when frustrated. All it has done is redirect her from banging her head on the floor. She still has the want. That has not changed. It did not disappear, it was not cured.
In learning more about ABA therapies, I find I am torn between knowing the therapies help Bridget conform to society and letting Bridget be Bridget.
Curing her autism means I would be changing who Bridget is as a person. That stubbornness in not wanting to comply, that is also the trait that has made her work so hard to jump. The need to have her bed made just so, that makes her room the cleanest in the house. The arm flapping in excitement, allows her to express her joy that her words cannot. Some of her autistic characteristics also makes for a better person. The person who cannot lie. The person who does not see nuances tends to see through bullshit. They see patterns where we see chaos. The hyper-focus may allow her to become expert on whatever subject she may be interested.
These are the good parts of her autism. Sure there are bad ones: head banging, violent outbursts, inability to communicate, unable to leave the room until it looks just-so and the list goes on. Yet both the good and the bad makes a Bridget with autism who she is underneath. Just as not having autism, being too short or too tall, being a person from Albania, having dyslexia or having to wear glasses makes you who you are.
To me, trying to cure her autism would be like trying to cure her red hair. I could do it, I could cover it up, I could dye it or I could cut her hair off. No matter what I chose to do, Bridget would still have red hair underneath it all.
Just like autism.