Life on the Spectrum

Today when a child is diagnosed with autism, he or she is given therapy. However, there are many of us who were diagnosed later in life who do not have access to the kinds of therapy and programs that are the norm for children diagnosed with Asperger’s or autism.

What can we as autistic adults do to help ourselves learn social skills, learn to read body language, learn to make eye contact, and learn how to make friends? There are a few things I’ve done and things that some of my friends have done that have proven to be helpful. Not every person will find every thing to be useful, but here are a few suggestions.

I took lessons in American Sign Language one summer. American Sign Language would probably not be difficult for an autistic person who is visually oriented. I am an auditory learner, so I didn’t do as well learning ASL as I did learning French in high school. ASL is a very visual language, and, contrary to popular belief, it isn’t just signs. Deaf people who use ASL also rely on reading body language and facial expressions. Those are the “punctuation” of American Sign Language. So if you want to learn to read body language and facial expressions, ASL might help you do that. A caveat, however; if you use ASL you must make eye contact. It is very important when you are communicating with a Deaf person that you make eye contact with them.

For a few years I was a member of Toastmasters. Toastmasters is an international program that trains people in public speaking. Many people, whether they have autism or not, find public speaking to be intimidating. Toastmasters helps people get over the fear of public speaking by providing opportunities to speak first in the safe environment of a club meeting and providing gentle, supportive feedback on ways to improve. Toastmasters also teaches body language and gestures and encourages speakers to make eye contact with their audience. During my time in Toastmasters I worked through a manual on interpersonal communication that included a segment on making small talk, and I still use the things I learned from that manual.

I always wanted to take drama in high school, and while I was not able to do that I did take part in a few school plays. Acting can be beneficial to those of us on the autism spectrum. Acting is another area that can help a person learn how to use gestures and how to read body language, and it can also give a person skills that they can call on if they are uncertain of how to act in certain situations.

Martial arts training can be beneficial for some adults and children with autism. Martial arts teaches how to be aware of the body. I know personally that I have trouble perceiving where my body is in relation to the physical world around me; I spend too much time in my head. The technical term for this is proprioception, and my lack of this has meant that I walk into walls, trip over things that I do not see in time, and am just generally clumsy. Many of us on the autism spectrum have trouble with fine and gross motor skills, which can be helped with proper training in martial arts. Also, learning self-defence can come in handy for someone who is being bullied or threatened.

I don’t know if you can call making friends a skill, exactly, but it is something that many of us have trouble with. There aren’t any classes you can take that teach you how to make friends — at least, not that I’ve found. The same advice that works for people without autism can work for us: join things, take classes, and/or do volunteer work. It can be easier to make friends when you are working side-by-side with another person or people on a project, a job, a task, etc., whether it’s cleaning up a public park, learning about photography, singing in a choir or building model airplanes. There isn’t the pressure to be talking all the time, and you have something right there in front of you that you can talk about, so you don’t have to search for a safe topic of conversation.

Now, the one problem that can face many people is that many of the above suggestions cost money, and employment and earning an income can be tough for people with autism and Asperger’s, who are often unemployed or underemployed. I would encourage you to contact the local employment agencies in your area to find out what is available; some programs will even pay for their clients to take certain courses or programs if they can be proved to be beneficial. It is also worth asking people who run various programs if they have any provision for assisting people with disabilities and/or people with low incomes. (A lot of this can be done through e-mail and electronic communication if, like me, you suffer from anxiety when it comes to telephones and talking to strangers, or maybe you have a friend or family member who could help with this.) It might also be worth getting together with others and pooling your resources. You might be able to get a group discount.

Even if there is little to no therapy available for those of us diagnosed with autism or Asperger’s as adults, there are still beneficial programs and services that, even if they were not designed specifically with autism in mind, can still provide useful support for us. Take a look around in your community and see what’s out there. You might find something that will help you.

I have been a renter for the past ~25 years, and I had believed I would always be a renter, because my income has never been sufficient to buy an actual house. I have never had the desire to buy a condo because of my sensitive hearing. If I had a noisy neighbour, there would be no building manager to complain to. To me, almost any neighbour would be considered “noisy” as long as I could hear them on my side of the wall, and I can hear almost everything on the other side of the wall. So if I couldn’t buy a house, I figured I would just rent for the rest of my life.

In January of this year I got an unexpected eviction notice from my landlord. Normally this would fill me with anxiety, but I’d been through this situation before and I knew I’d paid my rent. In fact, I had proof of it from my bank. So I was annoyed rather than worried. I sorted it out with the landlord, but I was still annoyed because it turned out that the management office sends out the eviction notices automatically if the landlord does not deposit the rent into their bank account on the second day of the month. My landlord deposited my rent on January 3, so the computer sent out the notice on January 2. Because this was not the first time I’d received an unmerited eviction notice, it made me want to move to a new place.

A few days ago a friend suggested I look into mobile homes. That way I would have my own home, and while the neighbours would be close, they would not be on the other side of the wall.

I did a search on the web, and I found what looks to me like the perfect home. So I scheduled an appointment to take a look, and then I called a real estate agent. However, I got the husband of the agent, because the agent wasn’t in her office at the time. I have to wonder if the husband has Asperger tendencies himself, because he went off on what sounded like a script and would not let me get a word in until he was finished. He went in to a lot of unnecessary detail about the history of mobile home parks in my region that I did not need when all I wanted was an agent to represent me if I chose to buy this mobile home. This would make sense if he has Asperger’s.

I didn’t like that he told me I would not be able to find a place because I have cats, and he didn’t like that I told him I’d already chosen a place without consulting the agent first, so I decided not to choose that agent. Because of my phobia of telephones, however, I was afraid it would be difficult to find another agent.

For a usually detail-oriented Aspie, I don’t always do a good job of looking at details when I’m trying to decide whether to buy something. I tend to get stuck on the minor details instead of the important ones. In the case of the mobile home I looked at today, I became obsessed with how I would fit my furniture into it, because there are heating vents in the floor that might be covered by my couch or bookshelves, and I kept bringing it up over and over again. “Where will I put the wall unit? Should I get rid of it and just buy a TV stand? Where should I put the armchair? Maybe it would be better in the bedroom instead of the living room. Will I be able to fit both computers into the office or only one? Should I use the spare bedroom as an office instead?” Unlike the usual stereotype of autistic/Aspie people ‘thinking in pictures,’ I’m not a visual person, so I was unable to “see” how things would be arranged, and this bothered me.

This is why I take my partner with me when I have a major purchasing decision to make, whether it’s a new bicycle or, in this case, a mobile home. I made a list of questions to ask the agent showing me the home and went over them with him while my partner looked into every nook and cranny in all the rooms and asked questions about things I hadn’t thought of myself.

The process of buying a new home has stirred up a lot of anxiety for me. When my partner showed up five minutes later than I expected him today, I was anxious. When I didn’t see the road sign for the turnoff to the mobile home park right away, I got anxious. When I realized how much money I would be spending over and above the purchase price, I got extremely anxious, even though I can afford it. When I couldn’t see the house number on the mobile home (even though it was obvious that this was the right one, since the houses on either side had easily visible numbers) I got anxious. “What if I move in here and I get sick and have to call an ambulance? They won’t be able to find me!”

I’m pretty sure I did not make eye contact with the real estate agent the entire hour we were looking at the place. I don’t think he noticed; if he did, he didn’t say anything. I could not tell you what he looked like if I had to describe him.

I’m sure I will have a lot more anxiety before this process is through, and I’ll have a lot more details to get through. Fortunately, one thing I am good at is paperwork. I also may have found a real estate agent without having to make phone calls, because the one who showed me the mobile home gave me his card and told me to e-mail him and he can represent me, so that’s one load off my mind.

What is Autism?

What is autism? That’s a good question. There’s no real answer to it, because autism is different things to different people. To some, autism is a curse that must be eradicated. To others, it’s a variation in human evolution.

I can speak only for myself and what autism is to me.

Autism is a part of me. It is a part of me that most of the time is neither good nor bad but is simply there. I have blue eyes, I have blonde hair, and I am autistic. That’s just the way things are. As Lady Gaga would say, I was born this way.

There are times when autism can be annoying or frustrating. These are usually times when my sensory issues or social skills deficits get in the way of my doing something that I want to do. That doesn’t mean that autism is bad. It’s just that being autistic can be more challenging than being neurotypical.

There are times when autism can be rewarding and fulfilling. When I attend autism conferences and spend time with other neurodiverse people, I have an amazing time and come away enriched. When I can figure out a problem by thinking differently, I’m thrilled. When my sensitive hearing enables me to hear something that others have trouble with, it’s like I’m rewarded for being autistic.

What is autism? Autism is my friends. Autism is my community.

Autism is me.

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.

Accentuate the Positive

When a new person asks one of us Aspies to describe Asperger’s Syndrome, we usually say something about having difficulties with social skills. We may use words like “socially awkward” or “social disability” or “having problems in social situations.” We may mention sensory issues, like having hypersensitive hearing or not being able to wear certain fabrics or eat certain types of foods because of the texture. If we’re being really elaborate, we might also include motor skills difficulties or clumsiness.

Why don’t we ever talk about the positive things? Many of us are hyperlexic. That means we’re very good with words. We might have huge vocabularies. Many of us are good writers. There’s also a well-earned stereotype of Aspies being computer nerds. There are many Aspies who work in the computer industry. There are also lots of us in the more traditional sciences. Some of us are math geniuses.

Why don’t we ever say, when asked about Asperger’s, “It means I’m good with words. I have a huge vocabulary. I also have some problems with social skills and sensory issues.” Why do we always list the negatives and never the positives?

I’m sure if we focused only on the positives people wouldn’t understand what Asperger’s is. They wouldn’t comprehend the very real challenges that people with Asperger’s face in social situations or the problems that we have in environments that trigger our sensory defensiveness. No one is going to say that being a math genius or a computer nerd or a writer with a huge vocabulary is a disability. And of course, if you’re looking for help, you’re going to have to tell people why you need help.

I’m not saying we should deny that we have challenges. But why should our challenges be all we ever talk about? Why don’t we ever talk about the positives? Yes, I can be very awkward in social situations. I can also sit down and explain complex subjects in terms that are simple for everyday people to understand. Yes, I have such sensitive hearing that sounds that don’t bother other people can send me running from the room with my hands over my ears. I can also write some great stories and blog posts. Yes, I am clumsy enough to trip over thin air. I also happen to be a good speaker.

Let’s focus a bit more on the positives, shall we?

Celebrate the Differences

For my entire life I have been “different.” I have also been called odd, peculiar, weird, strange and other, less polite things.

When I was a kid, I didn’t want to be different. Far from it. I wanted nothing more than to fit in and be like everyone else, because that way more people would like me and I would have more friends. Most kids probably feel the same way, and feel it even more so in the teen years. It was a bit easier when I had friends who, even if they didn’t share my differences, at least accepted them and were friends with me regardless of, or because of, my differences.

For a long time I wondered what it was specifically that made me so different. Did my parents raise me differently from other kids’ parents? I was somewhat over-protected due to my having juvenile diabetes. Was it the fact that I liked girls just as much as I liked boys? I got called a “lezzie” fairly often. Was it my religion? At a high school reunion I was told that I had been seen as very prudish and religious by my classmates. Was it my intelligence and good grades? No, there were other kids who got better grades than I did. Was it my diabetes? Doubtful. Maybe it was none of those things.

When I found out about Asperger’s Syndrome in the mid-1990s things finally fell into place. I had the ah-hah moment. The lightbulb went on. This was why I was different. It didn’t fix the years I’d been an outcast for my differences, but at least it explained them, and I no longer felt like my differences had been my fault. There was nothing I could have done to change the fact that I had Asperger’s, and there would have been no treatment available to me when I was growing up.

While I hated being different when I was a kid, today I enjoy being different. I don’t want to be just like everyone else. I am comfortable with who I am and don’t want to change that. If everyone was alike, where would we be? For example, if everyone was scientifically gifted and spent all their time in the laboratory, who would build the houses, grow the crops, cook the food or mind the children? If everyone was extremely social and wanted to spend all their time around other people, then who would be willing to spend hours of their time alone coding computer programs or doing chemistry experiments or writing books?

I do wish it were easier for kids to be different and be celebrated for their differences. I wish parents would stop comparing their kids to other kids, whether it’s their siblings or their classmates. (I realize not all parents do that, but many do, and it’s an easy trap to fall into.) Maybe your child isn’t good at math like his older brother, but is good at writing. Instead of saying, “Why aren’t your math grades as good as Bobby’s?” why not say, “I like this story you wrote”? And instead of asking Bobby why his writing isn’t as good as his younger sibling’s, praise his math skills. (Obviously, if one of them is getting failing grades in math or writing, then they need help, but that still doesn’t mean you have to compare them to their siblings.)

I wish teachers and other people who work with children could teach them to respect each other’s differences and not try to make every child be the same as every other child. Too often, when a child is bullied for being different, adults say that the child would not be bullied if he or she would just stop being “different.” That’s like saying that gay kids wouldn’t be bullied if they stopped being gay. Neither is possible, and neither should be a requirement to stop being bullied. The bullies are the ones who are wrong, not the kids who are different. The problem is that to a lot of people, both kids and adults, “different” is still scary.

It’s good to have people who see things differently from the mainstream. A different point of view can be welcome. Someone who is an outsider can shake up a group that has become set in its ways. I’ve seen a quote in a few places that says that the death knell of any organization is the words, “But we’ve never done it that way before!”

Speaking of quotes, I’m going to end with this brilliant one from the write Audre Lorde, who was herself different (her parents were immigrants, she was a lesbian, and she was disabled). “It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.”

It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.

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.

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