Life on the Spectrum

Posts tagged ‘Aspie’

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!

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.