Life on the Spectrum

Archive for December, 2012

Yes, it’s the “autism cure” subject again

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.

Media coverage of autism and school shootings: why I care

News reports coming out of Connecticut the last two days have reported over and over again that the man who shot 20 children and 7 adults in an elementary school had Asperger’s Syndrome or another autism spectrum disorder. While they are not coming right out and saying “Autism caused him to do it,” the fact that they are reporting that he was autistic or had another “personality disorder” is enough to suggest a correlation, or even causation, as well as perpetuating the myth that autism is a mental illness or personality disorder. The information they are using comes from a brother who had not seen the man in years; his high school classmates, 20-year-olds who probably bullied the shooter when he was in school and are at the age when many people think it’s perfectly okay to call people “retards”; and a “police official” who must remain anonymous because he is not allowed to talk about the investigation. None of these people are qualified to make an autism diagnosis.

I have been sharing many of these news articles on my Facebook page and my Twitter feed (drop me a note in the comments if you wish to follow me in either place), along with the contact information for the news outlets that publish them. I’ve been writing letters to these news outlets asking them to stop promoting the idea that autistic people are mass murderers and encouraging my autistic friends to do the same. We seem to be having some effect; there have been a few articles coming out that say specifically that autistic people are generally law-abiding citizens who do not commit planned acts of violence, though the articles also say that we are more prone than the general population to “violent outbursts.” Of course, they don’t actually explain what causes these outbursts: sensory overload, difficulty in communicating with neurotypical people, being ostracized by our peers, frustration at not being able to get our needs met, etc.

Since I’ve been posting and writing about this media coverage of autism and violence, some people have asked me why I must focus so much on the man who did the shooting instead of on the children who were killed. Why don’t I think about all those little kids, or do something for the families who lost their loved ones, instead of spending so much time concentrating on news reports about the shooter? Why do I care so much more about the shooter than about his victims?

Let’s get this straight. I do not “care about” the shooter. What I care about is the media coverage of the shooter, their insistence on prying into every little facet of his life to try to find a reason or motivation for his actions, and their leaping on the mere suggestion he may have had an autism spectrum disorder. I care about the effects of this media speculation on autistic people and their families, on me and my friends.

This may sound callous, but the children are dead. Nothing I can do will bring them back. There is nothing I can do for them or for their families. The families live thousands of miles away from me. Some media outlets have published contact information for the school where the shooting happened, but I don’t wish to contact them. They don’t know me. I’m a stranger from a place in Canada they may not even have heard of. I don’t want to intrude upon what should be their private grief that is already being exploited by the media and curiosity seekers and, even worse, by the Westboro Baptist Church.

However, if any of those families have members who are on the autism spectrum, then maybe I am doing something for them, even if they will never hear about it. I am trying to counter the misinformation being spread about autism by the media. It’s not unlikely that at least one or two of those families have an autistic family member, with autism diagnoses being so common today. I am sure that those autistic people, children or adults, do not want to hear that they have something in common with the murderer who took one of their loved ones.

It is quite likely that there are autistic children in Sandy Hook School, some of whom are probably among the survivors. I’m sure they don’t want to hear that the gunman who terrorized them and killed their classmates had a condition that they also have. What if their non-autistic classmates hear that the shooter was autistic, and they know that their classmates are autistic? Autistic children are already bullied; this will just make the bullying worse.

I encourage all of my readers, if you are autistic or have family members or friends who are autistic, to keep an eye on media reports of the school shooting and whether they mention autism. If they do, then dig out their contact information and write to them. Tell them that you are autistic, or you have autistic friends or family members, and that you are not violent and not a mass murderer. If the articles mention the “violent outbursts”, take a moment to explain what causes those outbursts. Try to keep your letter short — most newspapers have a maximum word count — and to the point.

I wrote a letter to the National Post, of the national newspapers in Canada. It will be published on Tuesday. The e-mail informing me that it will be published said, “Thank you for your brave letter.” I hope that there will be many more brave letters coming from the autism community.

Thoughts on a School Shooting

This is not intended to be a post about gun control, religion, mental illness, video games, or violent television. It’s only tangentially about Asperger’s, in the sense that it is my reaction to a horrible event, and I have Asperger’s, so that will frame my reaction to it. I am also a Christian, so that will also frame my reaction.

This morning, in a small town in Connecticut, United States, as many as 20 children went to school today and didn’t come home. Six adults went to work this morning and didn’t come home. Someone took a gun, went to a school, and shot them — 20 children and six (or seven; the numbers keep changing) adults.

No one knows why. There is speculation, of course. Some people blame gun laws in the United States. Some blame violent video games or violent television. Some blame religion, or lack of it. Some may even blame autism or Asperger’s Syndrome. But the fact is, no one knows, and probably no one will ever know. There’s a line from a song that goes, “They can see no reasons, because there are no reasons.”

We don’t know whether stricter gun laws would have prevented this. We don’t know if the shooter had a mental illness. We don’t know whether or not he played video games or watched violent shows on TV.

When I hear about things like this, my first reaction is generally disbelief. I literally cannot wrap my mind around it. While I know intellectually that it happened, I just can’t comprehend that 20-some people were shot and killed by one person, and that most of them were children, and that these children had parents who sent them to school this morning as they do most mornings, with no worries that someone was going to go into the school and shoot them, and that all of the victims no doubt had loved ones waiting for them to come home from school or work as they do any other day, and now they won’t be coming home, ever.

I don’t have an overtly emotional reaction to news stories like this. Some people might say that this makes me unfeeling. But the fact is that I knew none of these people. I am not a parent, so I do not know what it feels like to be a parent who loses a child in this way or any other way. I am sad in the sense that I know that this is extremely painful for people, whether they are the survivors of the shooting, the loved ones of the dead people, or the emergency responders (many of whom probably have children themselves) who had to deal with so many dead children. I feel sorry for these people, but I do not feel any personal connection.

What I usually do when I hear stories about events like these is hug my cats. If I had human children, I’d probably want to hug them. But I don’t, so I hug my cats. Sometimes I listen to music. Often song lyrics come to mind, like the quote from “I Don’t Like Mondays,” or Mr. Mister’s song “Kyrie Eleison.”

Sometimes I post pictures or funny stories on Facebook just to take my mind away from the bad thing. I don’t think there is anything wrong with laughing at a joke or looking at a cute cat picture after a tragedy.

And I pray. I always pray. I pray for the people who lost loved ones, including the family of the shooter, because he is dead, too, and he probably had loved ones, regardless of what he did. It is not their fault. I pray for the people who survived and are now traumatized. I pray for the people who responded to the school and had to witness the aftermath, and for those who are tasked with investigating the shooting.

I have long identified with the character of Anya in Buffy the Vampire Slayer. This what Anya has to say about death, after Joyce, Buffy’s mother, dies:

“But I don’t understand. I don’t understand how this all happens. How we go through this. I mean I knew her, and then she’s, there’s just a body, and I don’t understand why she can’t just get back in it and not be dead anymore. It’s stupid. It’s mortal and stupid, and, and Xander crying and not talking, and I was having fruit punch and I thought, well, Joyce will never have any more fruit punch, ever. And she’ll never have eggs, or yawn, or brush her hair, not ever and no one will explain to me why.”

I think that is a very Aspie reaction.

Let’s not fight about guns or religion or video games or anything else. Let’s just acknowledge that a bad thing happened, and we don’t know why. I know that people will try to find reasons, because we want to know why. We think that if we know why, then maybe we can stop it from happening again. But let’s leave that up to whoever is investigating the shooting, and let’s not try to explain something that we will probably never, ever understand.