Autism cannot be cured

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.

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15 thoughts on “Autism cannot be cured

    1. firebailey Post author

      Thank you so much. I admit I have it much easier than most. I am not dealing with violence or destructive behavior. I hope that we never have to. But I cannot deny that ASD has shaped Bridget into who she is, just like her dimples.

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  1. Barb

    Have I ever shared with you my rather wacky theory that autism is nothing more than evolution? Evolving to be kinder, less judgmental, more honest, and not so self conscious…Not such a bad thing really.

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    1. firebailey Post author

      I think because this is how Bridget always was I have an easier time accepting autism as a part of her. A unique part. I do not, like so many, have that before and after child where it appears that ASD has kidnapped your child and put an impostor in their place.

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  3. Kristi Campbell - findingninee

    Great job, sweets. I personally believe in ABA but ONLY when it’s done correctly and I sadly think that most of the time, it’s not done fully. ABA is what made Tucker speak. But it was the type of ABA that HIS teacher did in his Preschool Autism Classroom, and not about flash cards and data sheets. Nope. It was really looking at WHY is he doing this? Crap I need to write a post about this – have been meaning to forever. But yup. No cure for autism. I think that’s how it’s supposed to be, personally. 🙂

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    1. firebailey Post author

      I think I am lucky, because Bridget’s team seems to work like Tuckers. For example they know she cannot handle repeating things 10 times so the therapy/trial is adapted to her frustration level. And for learning to talk, etc…yes it is phenomenal. But do we need them to be 100% compliant? And if so, how do I make my husband 100% compliant?

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  4. Emily Ladau (@emily_ladau)

    As someone who worries about the impact of ABA therapy, I understand where you’re coming from. I’m glad though, so glad, that you wrote about why autism need not be cured. This perspective is important and validating to the lives of disabled people.

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    1. firebailey Post author

      Thank you. I worried. A LOT. about posting this. But if we are going to shout that society has to accept our children regardless of their ability, I think as parents and educators and therapists have to as well. That we as a whole have to figure out a way to not change the child, but make sure they do not harm themselves. Obviously I am still walking that tightrope as Bridget has ABA and discrete trials. That she cannot communicate her feelings leaves me just hoping I am doing the right thing.

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  5. Sylvia

    I so understand what you are saying and agree that we should never try to change the essence of who our children are, nor would I ever even want to. I have to admit though, that I really wish I could eradicate Bethany’s violence, aggression, and behaviors that threaten to isolate her from society!

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    1. firebailey Post author

      I totally get that, the wanting to eradicate the aggressive behaviors. I hesitated to write this because I know what we go through with Bridget is not the norm. If there is a norm. In your case Bethany’s brain tumor changed her essence. In Bridget she has always (and will remain) be that way. So to change her, to make her stop sucking her finger (for example) doesn’t seem right to me. Yet, I want her to be accepted.

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