Life on the Spectrum

Posts tagged ‘Asperger’s’

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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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.

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.

Why listen to autistic adults?

In hanging around the autism blogosphere I’ve noticed a large disconnect between autistic adults and the parents of autistic children. There seems to be very little discussion among those of us who are adults, who have grown up with autism, and the parents of the children who are currently growing up with autism and will one day become autistic adults.

I don’t know if this is because (1) the parents hope their children will be cured of autism before they become autistic adults; (2) because we adults talk about the difficulties and hardships we faced, and this distresses the parents who don’t want their children to face the same hardships; or (3) because many of us adults have accepted our autism and don’t want to be cured, while the parents are still hoping for a cure for their children.

I don’t want to go into the whole “cure” debate here, but I do want to address the second point here: that we autistic adults talk about the hardships we’ve faced, and this distresses the parents, who don’t want their children to face the same hardships.

This, to me, is the biggest reason why parents should listen to autistic adults: because we’ve been there. We’ve been there, done that, and bought the t-shirt. Most of all, we’ve survived and come out, hopefully stronger and wiser. We can tell parents, and older kids, what we’ve learned. We can say, “This is what worked for me in this situation. Maybe it will work for you too.” If there isn’t a solution, at least we can say, “I survived, and so will you.”

I Don’t Hate Autism

I don’t hate autism.

I know that there are parents who hate their children’s autism. I do not know what it is like to be a parent of a neurotypical child, never mind an autistic child. But I do know what it is like to be an autistic person, and I do not hate my autism.

I do find sometimes find autism to be frustrating and annoying. I don’t like some of the problems it presents. I don’t like having hypersensitive hearing, for example. Yet there are some ways that having hypersensitive hearing helps me in job as a transcriber. I can hear things that others can’t.

Autism is a part of me. It is inseparable from who I am as a person. There are, of course, other facets of me; I love cats, I love to read, and I love to write. It’s a bit of a stretch to say I love my autism, but as I said, it is part of myself, and I do not want to hate myself.

If I’d been given a choice as a kid to be autistic or be neurotypical, I imagine I’d have chosen to be neurotypical. I wouldn’t have chosen to be something that meant I never had friends, that meant that I was bullied, that meant that I was an outcast among my peers. As an adult, however, I would not give up being autistic. I would not give up the talents and abilities I have that I believe came from being autistic.

I have long believed that many of the problems that we have as autistic people come from the world around us. The world is usually set up for the majority, and the majority is neurotypical or at least non-autistic. This is why there are so many fluorescent lights and uncomfortable clothes and loud noises everywhere you go. If there were more autistic people, then people wouldn’t be expected to wear such uncomfortable things as ties or pantyhose. No one would make wool sweaters or constricting clothing. Labels wouldn’t stick out of the back of shirts. Everyone would wear what was comfortable for them and other people wouldn’t judge them for it.

I have never understood the love that some people have for volume. I don’t know why the volume dials on most music players enable you to turn the volume so high. I fully believe that the current generation and those to come will have hearing damage long before they hit their senior years, and it will be caused by listening to music turned to incredibly high volumes while wearing headphones or earbuds.

I often wonder why concerts must be so loud. I realize that the back rows need to be able to hear, but I don’t think the people on the next block over need to be able to hear. I’ve come out of concerts with my hearing temporarily decreased, and everything sounds muffled. I feel sorry for the band members who are up on stage performing next to the giant speakers. Is there such a thing as an Aspie rock musician? Oh, yes, there is one. His name is Gary Numan.

One positive thing I think that autism has given me is the freedom to stop caring what other people think. I’ve realized that what is most important is what I think. This doesn’t mean, as some people believe, that I don’t care if I hurt people. This is not what I mean at all. What I mean is that I am not going to worry about “looking stupid.” If I want to dance in the supermarket, then I will dance in the supermarket. If I want to talk baby talk to my cats when we’re at the vet’s office, then I will talk baby talk to my cats when we’re at the vet’s office.

I am autistic. Autism is part of me. It is neither all good nor all bad. It has positive aspects and negative aspects. I can’t pick and choose which parts of autism I will keep and which parts I will discard. I have to keep the whole package.

Scratchy Sweater Syndrome

One of the difficulties in diagnosing developmental problems like Asperger’s is that while there are symptoms listed in the DSM, they aren’t really very concrete. They can be terribly vague, and very much open to interpretation.

Take sensory problems as an example. Perhaps a child dislikes scratchy sweaters. Well hell, who likes scratchy sweaters? you might ask. Is there a disorder called “scratchy sweater syndrome”? Of course not. I’m sure there are people who will rush their child off to a doctor or a child psychologist at any little sign or symptom; the drawback of increased awareness of disorders like Asperger’s or other sensory or developmental disorders is that there are people who, like hypochondriacs, will suddenly start fearing that they or their child have a disorder (is there hypochondria by proxy?). Or a well-meaning professional with a little bit of training will become like the medical student diagnosing him or herself and everyone around them with every disease in the medical textbook. This child dislikes his or her sweater? He/she must have a sensory disorder! I know that when I first became aware of Asperger’s, I wanted to diagnose everyone around me with it.

This is when the parent, or teacher, or psychologist has to determine whether a child disliking a scratchy sweater is simply a normal child who has a normal dislike for scratchy clothes, or whether there is something more. Does the child have other clothing sensitivities? Is he constantly pulling at his clothes because he finds them uncomfortable? Is he so picky about what he is willing to wear that getting him dressed to go to school can trigger a complete meltdown?

There are skeptics, however. There are people who will say something like, “If the child is that badly behaved that he’ll throw a tantrum over a scratchy sweater, then there’s nothing wrong with him; there’s something wrong with the parents. Just make him wear the damn sweater already.” Or they will point out that disliking a scratchy sweater is, generally, pretty darn normal for both kids and adults, so how can that possibly be part of a sensory or developmental disorder?

I heard things like this often when I was growing up. Not the bad parenting part, but the “make her wear the sweater already” part. I hated a lot of the clothes that I was forced to wear as a kid. My mother wanted me to “look like like a girl” and I was forced to wear blouses with annoying lacy collars, dresses made of horridly uncomfortable polyester fabric (hey, it was the seventies), and nylon stockings.

Oh, how I hated nylon stockings. But girls didn’t wear trousers to go to church. Not in my family, anyway. I loved summertime because I was allowed to wear skirts without stockings. I loved the freedom of bare legs.

Clothes weren’t my only sensitivity, though. My biggest sensitivity was noise. I had, and still do have, hypersensitive hearing. To make things worse, I lived with two extremely hard-of-hearing parents. This did not help me learn voice modulation, something Aspies already have trouble with. I had to almost yell to be heard in my house, and both my parents talked loudly. I still get told not to yell when I think I’m talking in a normal voice.

Strangely, in such a noisy house, I had to learn to be quiet, because my dad worked shift work. When he worked the graveyard shift, everything had to have the volume turned right down, and it was very hard for me to make the change from “always loud” to “always quiet.” I was never very good at it. Sometimes I think I was born loud. It’s that voice-modulation thing again.

The common refrain heard around the living room when the TV was on was “Turn it up!” I don’t think my mother even bothered to wait to hear how loud it was. As soon as the TV was turned on, my mother would say “Turn it up!” I never could sleep late in the morning. My parents would turn on the “Broadcast news” channel (a text crawl of the day’s top news stories) with the volume turned up to their normal TV-watching level, even though the only sound from that channel was extremely annoying elevator music. That music was background noise for their morning — they didn’t even notice it — and it was impossible for me, the one with hyper hearing, to tune it out.

But just like the kid is supposed to wear the scratchy sweater no matter how much he dislikes it, I was (and still am) expected to put up with noise. If my next-door neighbour has his stereo on too loudly for my liking, I’m supposed to tune it out. (I cannot tune out stereos. It is impossible for me.) If I go to a parade and the local radio station is handing out noisemakers to the children lining the street, I’m supposed to just accept it. If I go to the library and kids are playing video games and yelling out their score to their friend on the other side of the library every five minutes, I’m supposed to think of it as “happy noise.”

I’ve been driven out of stores by the in-store music. If I dare to complain, I’m told that “It’s great music!” and this is apparently supposed to make me like it. I sometimes wonder how much money music stores lose not from people downloading music, but from people who go into the stores intending to buy something, but leaving because they couldn’t stand the in-store music. I know I’d much rather shop online than shop in a store where I’m being pummeled by rap music.

Today I went into a store intending to purchase two DVDs (they were having a two-for-$20 special) and an iPod case. Instead I bought nothing, because I was driven out by the loud, pounding rap music being played in the store.

But I am expected to put up with it. No one else has a problem with it (wanna bet?), so how could I possibly have a problem with it?

Back to the scratchy sweater. Probably nine times out of ten, the kid who hates the scratchy sweater is just a kid who hates a scratchy sweater. There’s no need to send him (or her) to a doctor to try to diagnose him or her with a disorder of “scratchy sweater syndrome.” But one time out of ten, it’s not just the scratchy sweater. It’s the scratchy sweater on top of a whole lot of other things that can add up to a child (or an adult) with some form of sensory and/or developmental problem.

Regardless, I personally think that no one, Asperger or neurotypical, should be forced to wear scratchy sweaters.