Life on the Spectrum

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How I run an Asperger Meetup Group

Several years ago I attended a group for people with invisible disabilities. While not all of the members had Asperger’s, at least two others did, besides me, of course. When the group folded, one of the Aspie members, who had saved our e-mails, contacted me to invite me to a group he ran called the Asperger Meetup Group, run through the website Meetup.com. Meetup is a site where you can find groups formed around a common interest, or start your own.

I attended the first meeting with some nervousness, but I needn’t have worried. I was among my own people. Chris D., the fellow who ran the group, had told me how to find them, and once I did so I was completely comfortable with everyone in the group. We met at the local White Spot restaurant. This was in 2005.

Unfortunately, Meetup started charging a fee not long after. Chris couldn’t afford the fee on his disability pension, and he didn’t have a credit card, so the group had to disband. I tried to restart it and run it through Yahoo Groups, but Yahoo just didn’t have the tools that Meetup had. Still, I was determined to keep the group going somehow, because I enjoyed it and I knew other people did too.

Then one day I received a credit card offer in the mail. I didn’t think I qualified for any credit cards, but I figured it wouldn’t hurt anything to fill out the application and send it in. I did so, and to my surprise I received a credit card in the mail. I immediately used the card to restart the group on the Meetup site.

The reason I use the Meetup site, even though it costs me nearly $150 a year, is that it gives me all the tools I need to run the group. It keeps track of how many people RSVP to every meeting. It provides me with an e-mail list so that I can contact the group members without having to remember all their e-mail addresses. It also allows me to contact members individually, and it allows them to contact me. I can use the site to provide information about the group, where we’re meeting, and what the ground rules are (if any.) There is a discussion board as well. Also, group members can suggest their own ideas for meetings. The site provides me with pre-printed flyers, with tear-off tabs, that I can post to promote the group, and signs I can print out to put on the table in the restaurant where we meet to help new people locate us when they come in. I can add tags to the group description on the website to help people find us if they’re looking for groups about autism, asperger’s, autism spectrum disorder, etc.

So I was now in charge of the Victoria Asperger Meetup Group. For awhile, this was enough. I didn’t have to do anything other than make a reservation at White Spot once a month. Before long, though, I realized that not very many people were attending the meets, especially in the summer. For two or three years in a row I cancelled the meetings in July and August when I received no RSVPs.

I wanted to attract more people to the group, so I started placing announcements in local free papers — Monday magazine and the Coffee News. Membership started to pick up.

In 2008 a reporter for the Victoria Times-Colonist contacted me through the Meetup site. She had been thinking about doing a story about Meetup.com, and when she looked through the various groups that met in the Victoria area she found the Asperger group and wanted to learn more, not just about the group but about Asperger’s in general. It happened that the newspaper offices were in the same building where I was attending school, so it was easy to set up a meeting with the reporter. We talked for a couple of hours, and then she attended one of our meetings.

The newspaper story, titled “Aspies Find Fun Together,” was published at the end of October You can see it here: http://www.canada.com/victoriatimescolonist/news/life/story.html?id=b84444ce-68c7-43a9-aaad-d0079fb1b7b9&p=1 Soon my INBOX was filling up with messages from people who wanted to join the group. By the time the November meeting rolled around I had 25 RSVPs. Unfortunately I had put off making the restaurant reservation till the last minute because every time I thought I knew how many people were coming, more people sent in their RSVPs, so the restaurant staff were not very happy with me. I believe this may have been why they suddenly started to refuse to give me reservations for the monthly meetings. Every time I asked for a reservation they were conveniently all booked up for that night.

People have asked why I hold the meetings at a restaurant. There are a couple of reasons. The most simple one is that I usually go to the meetings immediately after I finish work, it’s suppertime, and I’m hungry. The other reason is that it gives people something to do. If people are eating, then they don’t have to sit around and stare at each other while wondering what to say. If a person has trouble coming up with something to talk about, he or she can just use the excuse “I’m eating, so I can’t talk right now.”

Since White Spot stopped giving us reservations we’ve met at a few different places, including pubs and other restaurants. For a while we met at a restaurant that had a meeting room we were able to use, but sadly that restaurant closed down, and I haven’t been able to find another one that has meeting rooms. There are a couple of pubs that have areas set off that are like meeting rooms, but pubs are noisy places and the food isn’t usually very good.

We now meet more than once a month. For years the meetings were monthly, but one member suggested having a mid-month “coffee” meet (rather than dinner) and that’s become a regular event.

Besides the dinner and coffee meets, we have also had meetings for going to movies, going for picnics at parks, and going to the haunted house at Halloween. Last fall four of us went on an “Aspie Road Trip” to the ANCA Naturally Autistic Awards and Convention.

I still do my best to promote the group, and our meetings now have at least 15 people each. We were featured on TV on Superbowl Sunday (unfortunately, at the same time as the half-time show, so I don’t know if many people saw us), and I’ve been on a couple of radio shows to talk about the group. I post online on Craigslist and Kijiji as well as in the local free papers.

If you want to run your own Aspie group and can’t afford Meetup.com, I suggest the following.

Decide on a day, time and place you want to meet. Then start looking for places to advertise. Craigslist.com and Kijiji.ca are good places. Contact the local papers; they often have calendars that you can submit events to. Create some flyers and ask to post one at your local library — all the branches, if you can — and local businesses. If there are any organizations for persons with disabilities in your town, ask if they can help spread the word. If your ISP provides web space, get yourself a book on basic HTML, or a web-page creation program, and make a website for your group. Talk up the meeting with everyone you know; you’ll be surprised at how many people have a friend or a family member who has Asperger’s or another autism spectrum disorder.

Be organized. Create an e-mail list for your group, but also save everyone’s e-mail address separately. Create a list of group members with names and contact information so that you know how to contact each person individually. It might also be helpful to include a brief description of the person, in case you’re like me and have trouble remembering names.

Decide how your meeting will be structured. Mine is very informal. We don’t have any kind of check-in or agenda, but many Aspies prefer something with more structure. Whatever you choose, be sure to inform people so that they’re not surprised by either the structure or lack of it.

It’s also helpful if you have someone you can “deputize” to conduct the meetings if you can’t be there or are delayed in getting there.

Good luck!

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Myths About Autism Addressed by an Autistic Person

I just read an article called “Top Ten Myths About Autism From Moms Who Know.” When I saw that, I wondered: why from moms? Why not have an actual autistic person address myths? Someone commented that they’d like to see an autistic adult write a blog post about the myths, so here I am.

Myth #1: Moms of kids on the spectrum are “refrigerator moms.” Wow, are people still reading Bettleheim? There are all kinds of parents, just like there are all kinds of autistic people (kids and adults). Some mothers are affectionate. Some aren’t. This applies whether the children are autistic or not. A mother withholding affection from her child might cause the child to have emotional problems, but it doesn’t lead to neurological differences.

Myth #2 Autistic children people have no empathy. This is a very dangerous myth that has led to mass murderers being labelled as autistic. The problem isn’t a lack of empathy. The problem is that we don’t express empathy the same way non-autistic people do. I personally refrain from saying, “I know how you feel,” because I don’t always know how another person feels unless they tell me. One day a friend called me to inform me that one of her family members had died. I said, “Oh, I’m sorry,” and my friend laughed and said, “I’m not sorry [that her family member was dead.]” This is why these days I wait to hear what the other person is saying about how they feel before I try to express sympathy or empathy.

Myth #3 Autistic kids people need to be taught (or forced) to make eye contact. I literally cannot talk to someone and make eye contact with them at the same time. I have an automatic response of averting my gaze when I talk to someone. I don’t do it consciously. I have to consciously force myself to at least look in the person’s direction so that it appears I’m making eye contact.

When it comes to kids, I’d tell them why people expect them to make eye contact and explain that some people might think you’re dishonest if you don’t. Then I’d work with them to practise ways to at least appear that you’re making eye contact with other people.

I was once forced to participate in an eye-contact exercise. It was a “hot or cold” game in which an object was hidden in the room and I had to use eye contact to tell the person looking for it whether he was “hot” or “cold.” By the time I was done I was exhausted, shaking and sweating, my anxiety levels were through the roof, and I had a headache. Some people on the spectrum can make eye contact, but many of us can’t. Forcing us to do so doesn’t help.

Myth #4 Kids People on the autism spectrum are just like Rain Man.

Did you know that the person the movie Rainman was based on was not, in fact, autistic? His name was Kim Peek. Go look him up in Wikipedia if you’re so inclined.

The character of Raymond Babbitt had some autistic traits, such as being very attached to his routines and having meltdowns when those routines were disrupted. He insisted on watching the same TV show at the same time every day. When I was a kid, I “had” to watch the same shows every day, and I learned to tell time by learning where the hands were on the clock when my shows were one. If I didn’t get to watch my show, I’d have a meltdown.

However, not all autistics are savants, and not all savants are autistic. Most autistic people do not have savant abilities. Some do. Daniel Tammett, author of the book Born on a Blue Day, is one. But savants are not common. Rainman has made people think that we’re all savants, and I’ve had people ask me, “What’s your special ability?” when they find out I’m autistic.

Myth #5 Non-speaking autistics always have an intellectual disability. In other words, they’re retarded. There are many non-verbal autistics who can communicate through writing or typing. Some have written books. Many are considered to have intellectual disabilities when they are young, but once they learn to read and write, they are able to dispel this notion. I am acquainted with one non-verbal autistic who is a university student.

Myth #6 Autistic children people can’t stand to be touched. Wow, tell that to my friends. Seriously, I’m a hugger. But you know what? I like warning. I like to be prepared for someone to touch me. If someone touches me without warning, even if it’s my boyfriend, I cringe. I once spent a day working with someone who touched me every time she spoke to me, just a casual hand on my arm or shoulder, and at the end of the day I felt like I had bruises up and down my arms.

Touch has a big sensory impact. For some people on the spectrum, it’s too overwhelming. Others, myself included, like a bit of warning before being touched or hugged. That’s probably where this myth comes from. But this isn’t the case for everyone, and there are many autistic people, kids and adults, who enjoy hugging and other forms of touch. But I’d suggest that if you meet an autistic person, you ask before touching or hugging them.

Myth #7 There is an autism epidemic. No, there isn’t. Autism is not a disease, and it’s not contagious. Therefore, there cannot be an epidemic. Yes, there are more kids (and even adults) being diagnosed than before. It’s not all due to the awareness of Asperger’s or awareness that autism is a spectrum. Many kids who are diagnosed autistic today would have been diagnosed with something else 20, 30 or 40 years ago — ADHD or “hyperactivity”; mental retardation; mental illness; or my favourite, “childhood psychopathy.” That is what autistic children used to be diagnosed with.

Myth #8 Autistic kids people have no sense of humour. I like jokes, just maybe not as much as the next person. As I will often say, “I like jokes when they’re funny,” or “I have a sense of humour, but that is not funny.” This usually applies to a cruel “joke” that is aimed at a racial or sexual minority, or women, or disabled people.

My Aspie friends and I laugh a lot when we’re together. At a gathering we had a few nights ago, we were trading puns about cows. Other times we’ve laughed at the incongruity of a bunch of supposed anti-social people having a social gathering. There is a comedy troupe made up of people with Asperger’s, called Asperger’s Are Us.

I will admit that I dislike sitcoms. In my opinion, sitcoms are about stupid people who do stupid things. But I love Monty Python’s Flying Circus.

9. Autistic children people don’t feel love. If this were true, I wouldn’t love my boyfriend. I wouldn’t love my family. I wouldn’t love my cats. Autistic people would never get married, never have partners. Jerry and Mary Newport are two autistic people who fell in love and got married.

Temple Grandin says that she has no interest in or concept of romantic love, but she loves her family.

Myth #10 Autistic children people are mentally retarded. See the myth above about non-verbal autistic people. Just as autism is a spectrum, intelligence is a spectrum. There are people on the autism spectrum who are geniuses. There are people on the autism spectrum who have intellectual disabilities. Everyone else, probably most people, falls somewhere in-between.

It may not be possible to judge the intelligence of everyone on the autism spectrum. We may not do well on conventional IQ tests. When I was tested, the psychologist informed me that he wasn’t going to tell me my IQ, because the number did not reflect my true intellectual abilities. (I suspect that meant I scored relatively low.) The reason for this is that my “verbal” intelligence far outstripped my “non-verbal” intelligence. My verbal intelligence score was in the top 2 percent of the population, while my non-verbal intelligence score was in the bottom 40 percent. This is why I call myself a word nerd.

Many autistic people, especially those with language difficulties, score low on intelligence tests that are highly verbal. Many intelligence tests have cultural biases. One teacher gave an autistic person a test that asked, “What would you ask a friend who says he’s getting married?” The autistic person said he would ask, “What kind of cake are you having?” The teacher said that was the wrong answer. How can there be a “right” answer to that question? There are tests for non-verbal intelligence that are seldom used.

There are many stereotypes when it comes to autism. When a newspaper reporter called me up to ask if he could do a story about the group that I run for autistic and Aspie people, he asked if he could meet our “caregivers.” He asked if we had “workers” that we saw every day. I told him that we were too busy going to work or school to have “workers” that we saw every day.

The best way to bust myths about autistic people is to talk to actual autistic people. If you don’t know any, then read things written by autistic people — not about us, but by us. There are many autism blogs out there, but make sure you read blogs that are by autistic people rather than by parents. (You can read blogs by parents, too, but they don’t give an autistic person’s point of view the way blogs written by autistic people do.)

You know what? I’d love it if the Mythbusters did a special on busting autism myths. Maybe we should write to Adam and Jamie and ask them.

What’s in a label?

Over the years that I’ve been dealing with Asperger’s, I have met some people who say that they do not want to have a “label”, or they do not want their child to have a “label.” They believe that labels are bad things and should be avoided.

Of course, there are some situations in which a person has to have a diagnosis and has to reveal that they have the label of Asperger’s/autism. These are situations in which a person might need accommodations at work or school, or they need to access certain services. But what about social situations? What about telling your co-workers? What if you have made a new friend and you’re hesitant about telling them?

Well, what is the purpose of a label? A label tells you what’s inside the package. Say you go to a store because you want to buy a TV. But when you get to the store, all you see are boxes — boxes with no labels. They’re all the same size and shape. How do you know which box contains TVs, which contain radios, which contain other furniture? You don’t, unless the boxes are labelled.

It’s the same with Asperger’s. While some of us are seen as “quirky” or “eccentric,” most people can’t tell just from outward appearance that someone has Asperger’s. Unlike the more severe forms of autism, it’s usually not obvious. So you don’t know what’s in the box without the label.

I choose to wear the Asperger label. I may not tell a person the moment I meet them that I have Asperger’s, but if I know I am going to be spending very much time with this person, then I probably will tell them — I’ll use the label — because I want them to know what’s inside. I want them to know that if I’m not making eye contact, it’s not because I’m being dishonest or evasive. If I accidentally say something that could be considered rude or insensitive, I’m not doing it intentionally. If I tell them I wish to avoid a place that is extremely busy and noisy, I want them to know why.

“But Purple Aspie,” some people have said to me, “if I tell people that I am autistic/have Asperger’s, then they will have preconceived notions of what autistic is, and they will treat me differently. They will treat me as disabled. They will not see me; they will see my label.”

This is where a person has to decide for themselves whether they wish to reveal their label or not, and when to reveal it. My suggestion is that unless you need specific accommodations for your autism/Asperger’s in a particular situation, you wait a little while to reveal it. Let people get to know you first. Then, when you tell them, they will already know you, and they will (I hope) know how to treat you. But you have to be willing to speak up for yourself. I know it’s hard; one Aspie told me that he is much better at advocating for other people than he is at doing it for himself. But you are the one who knows what you need; you are the one who knows how you wish to be treated. Sometimes you may just have to say, “I’m the same person I was before you read what was on the label.”

In the end, it’s up to each individual person whether or not he or she accepts the label or tells other people about it. I think labels have purpose, but we have to be careful how we use them. I’m reminded of the time my boyfriend got a brand-new label maker and went around sticking labels on everything in the house, including the cats. We should not be treating people that way, going around sticking labels on everyone willy-nilly. We should use labels where they are appropriate and useful, to help us understand what’s inside.

There is no such thing as a “voluntary” cure

I recently read a book by a woman with Asperger’s who said that she does not wish to be cured, but she would support the idea of a voluntary cure — that is, if a cure for autism were to be found, she would be in favour of the idea of curing people who wished to be cured.

The problem there is, there is no such thing as a “voluntary” cure.

if a cure became available, it would be given to autistic kids who are too young to make a choice for themselves. The “autism parents” I encounter online generally want their kids to be cured, and you can’t really blame them when you are aware of the challenges faced by autistic kids. Most parents want what they feel is best for their kids, and most parents sincerely believe that a cure is what’s best for their kids. Of course, younger children aren’t able to decide for themselves whether they want to be cured or not, and it’s unlikely that their parents would wait until they were old enough to decide.

The cure would probably be given to non-verbal adults who can’t speak for themselves or who are considered to not have the cognitive ability to decide for themselves whether or not they wish to be cured — the ones who are often called “low-functioning.” The problem is that this assessment of “low functioning” is based solely on observation rather than on a person’s actual cognitive abilities. Many autistic people are given this label simply because they can’t talk.

Of course, people will ask: “What’s wrong with curing low-functioning people?” It depends on what you consider to be low-functioning. Where do you draw the line? I never hear of “medium-functioning” or “moderate-functioning” autistic people. I hear only of high- and low-functioning. Where does “low-functioning” end and “high-functioning” begin? For many autistic adults who are considered high-functioning, their functioning level can change depending on things like fatigue, hunger/low blood sugar, stress, having their senses overwhelmed, etc. Also, as I said, if the cure is to be voluntary, then simply curing someone because they are considered “low-functioning” without their input is not exactly voluntary.

People who are accessing government services for themselves or their children for autism — for example, funding for intervention/therapy or help with life skills — would face having those services taken away because there is a cure available and therefore autistic people don’t need services anymore. When money is tight, as it always is, governments go on a cutting spree, and services to disabled people are almost always on the chopping block. So if you’re autistic, or your child is, and you want help, you’ll be told to go get yourself or your child cured because the government isn’t providing services anymore. They will probably say, in order to make you feel bad about asking for help, that they are going to spend the money on people for whom there is no cure — say, people with Down Syndrome, for example — and how could you not want these people to have services? Even such a thing as disability benefits would probably be contingent on going and getting cured.

Another concern I have about voluntary cures is the number of people who want a cure because they are depressed. They believe that autism is the cause of all their problems, and if they got rid of it, then everything would be sunshine, lollipops and rainbows. I’ve encountered male Aspies who want to be cured because they believe they will never have girlfriends as long as they have Asperger’s, and if they were cured then women would be apparently lining up at their doorsteps wanting to date them. My belief is that if an Aspie were cured, that doesn’t mean that they’re going to wake up with all their social skills and dating/relationship skills intact immediately, with no effort or work on their part. Even NTs have to learn social skills and relationship skills. They don’t just appear overnight. I know plenty of Aspies who have partners and plenty of NTs who do not. Also, depression might not go away simply because a person no longer has an autism spectrum disorder. I’m afraid that the person who wishes to be cured because they are depressed might find that things are not magically improved simply because they have been cured of autism, and then they could be even more depressed. They might discover that they actually liked the way they were before they were cured, but the cure is not likely to be reversible.

In my ideal Aspie world, we would not jump to the conclusion that an autistic person needs to be cured because they are depressed. Instead, we would treat the depression. We would not say a person needs to be cured because they have difficulty with social skills; instead, we would teach them social skills.

Some autistic people live in group homes or other assisted-living types of arrangements because they are unable to live independently. I’m sure that’s another reason given for wanting to cure autism. But what if the person is happy in their living situation? What if they don’t care whether or not they live independently? Why fix what isn’t broken?

There may be an autism cure one day. It may be called “voluntary.” But I doubt very much that it actually will be voluntary, at least not in the way that I understand the meaning of the word “voluntary.”

You don’t outgrow autism

Recent articles like this one (http://www.bbc.co.uk/news/health-21029593) state that children may “grow out” of autism.

I’d like to tell these people that I’m 44 years old, and I have not yet outgrown my autism.

Children (and adults) can lose symptoms. With proper therapy and education, autistic people can learn to behave in ways that are almost indistinguishable from non-autistic people. However, that does not mean they are no longer autistic, because autism is wired into the brain. They simply appear to not be autistic.

I think the difficulty comes in the diagnostic criteria. Right now there is no simple medical test that can prove that someone is autistic. The diagnosis is made by observing behaviour. When an autistic person no longer behaves in what is considered to be an autistic manner, then if you’re going by behaviour alone, that person wouldn’t be considered autistic.

I’m sure that most people who know me wouldn’t have any idea I’m on the autism spectrum if I didn’t tell them. I’ve had people tell me I’m too intelligent to be autistic. I’m too social to be autistic. I have too many friends to be autistic. I have a job, therefore I cannot be autistic. I have a boyfriend, therefore I cannot be autistic. All of these observations are based on outdated stereotypes of what autism is.

I compare my autism to my diabetes. If I test my blood sugar, inject my insulin, watch what I eat and get some exercise, I don’t show any symptoms of diabetes. Does this mean my diabetes has gone away? No, of course not. My pancreas still isn’t producing insulin. I don’t think anyone would ever say that I don’t have diabetes just because I’m not showing symptoms at a particular time. But diagnosis of diabetes is based on actual medical tests, and as I said, there is no one, single, infallible medical test for autism, and there won’t be unless brain imaging is done on enough people diagnosed with autism to show what exactly it is in the brain that causes a person to be autistic.

A person can stop having symptoms of autism, but I don’t think they can “outgrow” those symptoms. A child who received absolutely no therapy for their autism probably would not stop having symptoms just because they reached a certain age.

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.