Life on the Spectrum

Posts tagged ‘Asperger’

Autistic person speaking

November 1 is Autistic Speaking Day, also known as Autistic Communication Day (because not all autistic people speak the way we normally understand the concept of speaking.) This is a day for autistic people to speak, literally or figuratively, for ourselves instead of sitting back and letting organizations like Autism Speaks try to speak for us and about us. Autism Speaks has no autistic people on its board of directors, so they’re not doing a very good job of speaking for autistic people.

When I was wondering what to write about today, I happened upon a series of posts that a blogger called Neurodivergent K wrote for Autistic Speaking Day. They’re about a situation she encountered at Autreat, the autism convention that happens in the United States every year. If you’re interested in what she has to say, you can go to http://timetolisten.blogspot.ca/ and read her series of “Autistics Speaking Day: truth to power” posts.

I had an experience at an autism conference that was similar to hers, though less serious. K’s experience had to do with auditory sensitivity, but hers was more serious as she has epilepsy that can be triggered by sensory overload, and she had a number of people try to tell her that she was wrong to complain about the situation that almost caused her to have a seizure.

I went to an autism convention in October. It was planned by an autistic person for autistic people. However, not all the people involved were autistic. One person who presented at the conference works with autistic people, so I assumed he was familiar with the types of sensory sensitivity autistic people have. To be generous to him, I will assume that he is unused to making his presentations to autistic people and instead makes them to non-autistic, non-sensory-sensitive people.

There was one day during the convention when this particular person was scheduled to give a presentation from two o’clock to three o’clock. I had seen snippets of his presentation during the convention already, and I knew that they contained very loud, pounding rock music. In fact, his presentation seemed to be one long rock music video. So I decided to take an extra-long lunch that day and sit on the waterfront where it was peaceful (it was a grey, cloudy day so not many people were around the waterfront) and I was in familiar surroundings of ocean and mountains. I’d already had problems that day as a few people had brought children to the morning presentations, and there wasn’t much for the children to do so they had become bored and disruptive (note that I am not blaming the parents, who had been assured that children were welcome; children were welcome, but there wasn’t anything for them to do), which had disturbed me and made it difficult for me to enjoy the morning session. That was why I had decided to head down to the waterfront in the first place. Ocean and mountains are my touchstones.

At three o’clock I arrived back at the place where the presentations were being held, but I could tell even before I went inside that the music was still going. So I walked back up to my motel, ate a granola bar and checked my e-mail before returning to the centre. Unfortunately, the presentation was still happening, even though it had been scheduled to end at three. When I objected to the music and pointed out that the presentation was supposed to be over, the director of the convention said that they had started late and suggested I go for a walk if the music bothered me.

Wait a minute. I’m autistic. The person making the presentation with the loud music is not. Shouldn’t the needs of an autistic person at an autism conference be paramount?

No one could tell me when the presentation was supposed to end, so I was reluctant to go for a walk in case I missed the delegate meeting that was scheduled to come after. I sat down, figuring it had to be over soon since it was already half an hour overtime. But it didn’t end. It didn’t end for another hour. I tried my best to tolerate it. I put my hands over my ears, but there’s only so long that anyone can do that, and soon I was sitting in my chair, rocking back and forth with my hands over my ears close to bursting into tears.

The odd thing is that no one else complained and no one seemed to care that I was in distress. Surely other autistic people have noise sensitivities, I thought. But no, everyone just sat and watched the video presentation. Before long the presenter started to speak, but the music was still going and made it impossible to hear him. Even worse, he was speaking through an interpreter who wasn’t completely familiar with the language he was interpreting.

Eventually someone suggested that the music be turned down, and the music did get turned down, but not by much. It went from “wall-shaking volume” to “dull roar.” I used earplugs, but unfortunately, as someone with extreme hearing sensitivity, I’ve used earplugs more than half my life, and I’m almost completely immune to their effects. All they do is make it difficult to hold conversations. They don’t block out anything that’s not speech.

The noisy music presentation finally ended 90 minutes after it had originally been scheduled to end. We had the delegate meeting, but unfortunately the children were still there and still disruptive. I picked up my bag and announced that I was completely fed up and was leaving. Fortunately someone agreed to take the children into another room to entertain them, otherwise I’d have completely missed the delegate meeting that I wanted to attend.

Unfortunately, I have not encountered a lot of sympathy or support for my experience. No one else who attended seems to be bothered by noise the way that I am bothered by noise. I still can’t understand how anyone who is holding an autism conference, whether it’s the one I attended or the one Neurodivergent K attended, can not comprehend that some autistic people have noise sensitivity and that we have a right to have our sensory sensitivities accommodated at autism conferences.

I may not attend this conference next year. I was hoping to go to the one that Neurodivergent K attended, but because of their lack of support for auditory sensitivity, I may not go to that one, either. I am very unhappy that there are autism conferences that do not accommodate hearing sensitivity and I am beginning to think I may never be able to attend any autism conferences at all.

Purple Aspie Celebrates 1000 Ausome Things #Autism Positivity 2013

What is positive about autism? What is awesome (ausome) about autism?

I thought about this a lot last night when I was trying to work out what to write for the autism positivity flash blog. At first I thought I would write about myself, but I couldn’t think of anything about me that is awesome. I’ve had people tell me that I’m an awesome writer, editor, cat mom, and autism/Asperger advocate. But I could be any of those things without being autistic.

I could write about the positive things that I find come along with being autistic. I could write about how my being very auditory-oriented helps me to write dialogue when I write fiction. I could write about how being extremely detail-oriented makes me a good editor. I could write about how my auditory hypersensitivity makes me good at transcription.

I have decided, however, to write about what I find to be one of the most ausome things about autism, and that is the autism community and the ausome people in that community.

In the eight years since I was diagnosed autistic — and the eight years before that, when I was looking for a diagnosis — I have met many ausome people. In that time I’ve also worked to bring people together, to help autistic people meet and support and learn from each other through my Asperger Meetup Group and my participation in the ANCA Naturally Autistic organization. After I attended the Naturally Autistic Awards, Convention and Festival last year I made dozens of new friends from all over the world.

I belong to many online autism communities where people post questions and ask for help and information, and there are always autistic people and parents of autistic children who are willing to give help and advice to those who ask for it.

There are many people in the larger autistic community who work hard to change people’s attitudes about autism from negativity to positivity. There are self-advocacy organizations and parent organizations. There are probably more than a thousand ausome autistic people who are working to make the world a more positive place for us, and I am just one of them. I guess that makes me ausome too.

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!

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.

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.

Stop hating

A few days ago I was asked whether I loved autism or hated autism. I said that I don’t hate autism, and I don’t love autism. The person who asked me this question then asked what I might say to someone who hated autism, especially their child’s autism or their own autism.

My reply was that autism doesn’t care if you hate it. Autism isn’t a person. Autism doesn’t have feelings, and it’s not going to go away just because you hate it.

Hating autism isn’t productive. I can certainly understand being frustrated by autism, being annoyed by autism, being tired of autism. I can understand how frustrating it can be when autism prevents you from doing something or makes it difficult to do something that non-autistic people find easy to do.

However, I believe that hatred is poison. Hatred is not productive. Hatred doesn’t hurt autism, but it may hurt the person doing the hating, and even worse, it may hurt an autistic child. You see, a child isn’t going to understand that it’s the autism being hated. The child will think that he or she is the one being hated.

I have always said that autism is an integral part of a person, that there is no separating the person from the autism or the autism from the person. If you hate autism, then you are hating something that is a part of a person’s identity. If I hate autism, then I am hating a part of myself, and I don’t want to hate a part of myself. If I had an autistic child and hated the child’s autism, then I would be hating part of who my child is.

I won’t tell people to not get frustrated or angry or just plain fed up with the effects of autism on themselves or their children. I will ask them to stop hating. Stop using the energy for hatred and turn it to something more productive, like working with an autism therapist on the things that make you frustrated, angry and fed up.

I also think it’s okay to vent. Venting is a way of letting off some of that negative energy, especially if you vent to people who understand. That’s one way in which the internet is helpful to autistic people and to parents of autistic kids. We can find others in similar situations and vent to them, and they will understand.

So please, don’t hate autism. I’m autistic, and I don’t want you to hate me. Don’t make your children think you hate them, either.