Life on the Spectrum

I sometimes say that I am in favour of treatment and therapy for the symptoms of autism, but I am not in favour of a cure. I know that there are many people who are in favour of a cure for autism, and this is my attempt to meet them halfway. You see, I am not a parent. I do not know what it like to have a child, either autistic or non-autistic, so I do not have a personal understanding of how the parent of an autistic child feels about curing their child. So I try to suggest that maybe if we could treat the symptoms, that would make the child in question be happier and healthier and then maybe we wouldn’t need a cure. I also think that therapy would be beneficial for autistic adults too, to help us find ways to have fewer meltdowns, ways to help us make more friends, ways to help us develop better motor skills.

Sometimes people compare us to the Deaf community. In the Deaf community there are people who have cochlear implants and people who do not. They have a choice, and they have made it. However, there are parents who get cochlear implants for their children while those children are very small and do not have a choice. To most non-Deaf people, it’s a no-brainer. Who would choose to remain deaf if they had a choice? Who would want their child to be deaf? I can’t answer those questions, as I am not Deaf, but there are some Deaf adults who choose to not have cochlear implants and who, if they had children, might not want their children to have them until the children are old enough to choose for themselves. They want to expose their children to Deaf culture, to the Deaf community. (Just an FYI: I capitalize “Deaf” when talking about Deaf culture and the people who follow it; I use lowercase “deaf” when talking about merely the inability to hear.)

I know a Deaf woman who has chosen for the time being to not get a cochlear implant. Right now she is entitled to an ASL interpreter or a captioner (a person who sits with her and types on a laptop computer so that she knows what other people are saying) in certain situations, such as medical appointments or when going to school, under human rights laws. However, she expressed a concern that with the increasing number of people getting cochlear implants, one day someone will simply say to her, “You don’t need an interpreter. Go get a cochlear implant if you want to know what people are saying,” and that her right to have an interpreter/captioner will end because she wouldn’t need one if she had the implant.

This comparison to the Deaf community is behind some of my “cure” fears. I fear that if one day autism is cured, children will not have the right to choose to not be cured, because governments will simply stop paying for autism therapy because “there’s a cure, so your child doesn’t need therapy,” or because their parents, believing sincerely that a cure is what is best for their child (and I can’t completely fault them for that) will have them cured without asking the child what he or she wants. Again, I can’t totally blame them. If a child is autistic and non-verbal, how can you ask them, especially if they are too young to use an assistive device?

I’ve been told that deaf people can turn off cochlear implants. You can’t turn off a cure for autism.

I do not know how a cure for autism would affect me if there were one. As I’ve said before, I don’t know where “I” end and “autism” begins, or if there even is such a place. I don’t know what I would be like without autism, and I don’t know if I really want to know. Maybe I’d be better at eye contact, or maybe not, since I’ve not been making eye contact for 40-some-odd years and am simply not used to making it. Maybe my hearing would be less sensitive. Maybe wool sweaters wouldn’t bother me as much. Maybe I’d enjoy parties more, or maybe not. I’m sure I’d still be an introvert, but maybe I wouldn’t worry as much that my social skills wouldn’t be up to the task of making small talk at a party.

When it comes to social skills, even if my autism disappeared overnight, that wouldn’t mean that my social skills would improve overnight. I’d still have to learn them.

Ideally, though, I’d prefer it if there were effective (and accessible and affordable) therapies and treatments that could help treat the “bad” stuff — meltdowns, sensory issues, eye contact difficulties, communication problems, inability to speak, executive function disorders, motor skills problems and yes, social skills problems — without taking away autism itself, because as I said, I’m used to being autistic and it makes me nervous to think about not being that way.

When it comes to children, it’s harder. On the one hand, I don’t want them to suffer from sensory overload or run into traffic because they have no sense of danger or be unable to communicate until they’re old enough to type on a computer or be ostracized at school due to their autism. On the other hand, I want them to grow up to be gloriously, brilliantly autistic — not brilliant in spite of their autism, but along with their autism or even because of it — without having someone mess with their brains in an irrevocable manner.

I’m not saying that all geniuses are autistic or that all autistics are geniuses (I’m certainly not), and we certainly can’t just go dig up Einstein or Mozart to prove they were on the spectrum. I just don’t want to deny someone the chance to grow up to be a Mozart or an Einstein because their autism was cured at a young age and that changed their brain in such a way that they they no longer have those “genius” characteristics.

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Comments on: "Yes, it’s the “autism cure” subject again" (1)

  1. The worst of my son’s symptoms are treated, but having said that he has a lot more going on with him than autism alone (as has probably become apparent to you over the period of time we’ve come to know each other). One of my “symptoms” (chemical depression) is also being treated.

    I still don’t want a cure though. Neither my son nor myself would be who we are if our autism were to be “taken” from us, and that’s a dreadful thought.

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