Recently at work we had some disagreements about an issue. In the end we realized that some of the disagreement was because we were using terms that we thought meant the same thing to everyone in the conversation. As it turned the two sides of the argument were using a different definition. Both definitions could be found in the literature, it just depended where you looked. We realized we had to step back and review the definitions in the literature and restart the discussion with the awareness of the different definitions. To facilitate conversations we agreed on the terminology and what it meant collectively. It required one side to compromise and agree that yes the word means something different to the other side. In order to end the arguments we needed to all start from the same definition.
In the autism community there is constant discussion, bickering, and hurt feelings over this word. Sometimes there are huge fights over this word. Cure as defined in the Merriam Webster dictionary means:
: recovery from a disease <his cure was complete>; also : remission of signs or symptoms of a disease especially during a prolonged period of observation <a clinical cure> <5-year cure of cancer>—compare arrest2: a drug, treatment, regimen, or other agency that cures a disease <quinine is a cure for malaria>3: a course or period of treatment; especially : one designed to interrupt an addiction or compulsive habit or to improve general health <take a cure for alcoholism> <an annual cure at a spa>
Autism Speaks uses the word “cure” in many of their literature and say they are researching for a cure. Based on some of the research Autism Speaks has funded I am pretty sure that Autism Speaks truly means cure as defined in the dictionary. Since on their website they even go further to say they want to prevent autism. This is not a post about the evils of Autism Speaks. There are many posts that have already taken that on just a couple of my favs are here or here. Some people defend Autism Speaks because they provide valuable information to families, they are out there spreading awareness, etc. I get that because back not so long ago I was involved with Autism Speaks. Why? Because when my son was first diagnosed that was the organization that was in my face. When I went to events they talked about wanting to help autistics. They seemed to be very caring parents at the events that just wanted to help their kids.
I opine that most (some are in jail for not) parents just want to the best for their kids. Every parent of autistics I have interacted with all come across as caring for their kids. But then one of them will “vent” by saying they hate autism or that autism sucks. Or an autistic tweets one version or another of how they don’t need a cure. The other side responds. I have recently asked a parent if they really wanted a cure or if they just wanted certain behaviors gone. They asked if there was a difference. Yes there sure is!! I have wondered for a while how many others don’t see the difference.
To me (based on above definition) cure means to treat/alleviate all of the symptoms of a “disease”. So much of that makes me bristle. I don’t feel I have a disease. If you are starting to think that is because I am high-functioning- don’t please just go read my previous post on acceptance. Let’s look at my son since he is professionally diagnosed and has more recently had severe “behaviors”. I think as parents we sometimes focus on the behaviors. Sure when your kid (my son) is smearing poop on the wall, refusing to do school work, flipping desks over at school, yelling at you, staying up half the night, you just want those behaviors to end. In the moment of exhaustion they (me) aren’t thinking well autism also makes my child a great musician, a brilliant mathematician and able to someday do something wonderful like develop the Theory of Relativity (not my kid but I don’t know yet what he will do ).
When someone says I want a cure I think some people are just meaning that they want the behaviors to stop. Behaviors are a way of communication. Again let’s look at my son. He is a pattern thinker and he also has extreme sensory issues. As mentioned this makes him a great mathematician and a brilliant musician. However the same super sonic hearing & desire for patterns made him hide under tables at restaurants or in the cafeteria at school. (in case you didn’t know school cafeterias are chaotic and noisy). When forced to go to the cafeteria or even worse gym he would act out. Instead of “curing” his sensory issues we worked on his ability to recognize what was causing his meltdown. He has learned to remove himself from the situation or advocate for himself. He has also learned to control his emotions so that he doesn’t blow up. He still has super sonic hearing, loves routines, thinks in patterns, and looks at the world differently than others. We helped him work through what was causing the behavior.
This took work on all of our parts. We still have work to do. He makes improvements every day on his own timeline. I don’t want a cure for him. Yes I want him to be happy in his life. I want peace and happiness as well. The only way to get there is to work on behaviors and to work on acceptance. Flipping desks would never be accepted but maybe if they had realized and listened to his needs to begin with he wouldn’t have flipped the desk. In fact I know that for sure because I told the teacher exactly what triggered it and how they did the exact opposite of what I told them to do. I was told he needed to learn to deal with stuff better. An 11 year old autistic needs to learn to deal with things better, well duh he is 11, why don’t you meet him half way.
That’s what autistic adults are told as well. We need to deal better and not be so sensitive to the word cure. Autistics are literal. When you say we need a cure we have the definition in our mind. To us it reads as you want all our autistic traits gone. I wouldn’t know how to all of a sudden be a different person. Sure I have sensory issues so I shop accordingly. I am nervous about the social part of the formal event coming up but I have gotten better over the years. I like my hello kitty lunch box. I like having “scary” memory, it drove me nuts when I was sick and had memory loss of events. I was told I had “normal” memory- it was awful!!! I would not want to be like that all the time. I like being my unique, interesting, scary “memory” self. And now that my son is away from the judgement from teachers and other kids he is finally happy being himself too.
“Preventing” autism means that you would prevent me from being born. When Autism Speaks and other parents talk about how it is a disease that needs prevented or cured it sends the wrong message into the community. For better explanation of that see this post here (warning for shock value but I totally agree that these messages affect how autistics are treated) Some autistics said that post went too far. I don’t know- if all of these people are saying it is a horrible disease well why wouldn’t that lead to negative outcomes for me, my son, your kid, or whoever you know (or maybe don’t know because they blend in so well).
I’ve seen parents say anyone who speaks positively about autism is just painting an inaccurate picture of rainbows and unicorns. My son wasn’t painting rainbows with his poop and I sure am not painting rainbows for new parents. But hell yes I want parents to know that their kid is happy and that the best way to help their kid is to advocate for acceptance and help their kid with working through their struggles to the best of their ability. An autistic child may not live up to your expectations when you want them to but they may also exceed your expectations when you least expect it.
I want to call a truce. I want us all to agree that the word cure and prevention means what they mean. Don’t use it to mean you want to help your child with certain behaviors. If all you mean is that you want to advocate for your child, that you want them to be happy, that you want to help them work through issues and behaviors then say that!!!
Please, let’s get the message into the community. Treatment & supports – yes. Cure & prevention – hell no!!