Life on the Spectrum

Being Called a Burden

In addition to Asperger’s, I have lived with type 1 diabetes for most of my life. It was not something I chose, nor something I caused. It was caused by an autoimmune reaction to a childhood virus, not by obesity or inactivity or too much sugar or playing video games or any of the other supposed causes of diabetes.

People with diabetes and also people with autism spectrum disorders are often referred to as a “burden” — a burden on the health care system, a burden on the economy, a burden on the school system, a burden on taxpayers, etc. I don’t like being referred to as a burden, and I am sure other people don’t either.

When it comes to diabetes, proper health care and effective diabetes treatments and control can lessen the expense of diabetes to the health care system and to the persons with diabetes. With proper care by both doctors and the diabetic people themselves, people with diabetes suffer fewer complications and spend less time in hospital. Not only that, but people with well-controlled diabetes actually have fewer sick days and miss less work than people who don’t have diabetes.

When it comes to autism, I recently saw an article entitled “The epidemiology and global burden of autism spectrum disorders.” (You can read the abstract here.) There’s that “b” word again. The study that this article is about treats autism as a disease (hence the word “epidemiology”) and talks about how to estimate “the global burden of ASDs.”

Interestingly, the conclusion was that autism spectrum disorders “account for substantial health loss across the lifespan.” Since autism is not a physical illness as we understand illness, I would suggest that this means autistic people are not getting the health care we need. I have personally found that doctors do not take me seriously when I try to tell them about how I am feeling with regard to pain I experience (both physical and mental) and they accuse me of exaggerating and looking for sympathy. This then makes me reluctant to tell them about any health problems I have, and therefore these problems don’t get treated. I have also heard that many people with intellectual disabilities don’t get the care they need due to difficulty communicating with doctors. This could especially be a problem for non-verbal people, especially since doctors make more money by seeing more people, and they may not want to spend the extra time necessary to communicate effectively with a non-verbal person, who may be typing out their answers or requests on a computerized device, or an intellectually disabled person.

While I didn’t see it mentioned in the abstract, another “burden” of autism is the cost of government financial benefits paid to autistic people who are unemployed. Many autistic people can work and want to work. Autistic people can be some of the most dedicated and hard-working employees an employer could have. Yet there is an extremely high unemployment rate among autistic people because employers don’t want to hire us or don’t want to make any accommodations (like giving written instructions instead of verbal, or vice versa; providing a quiet environment; allowing an autistic employee to wear sunglasses, earplugs or headphones; allowing the employee to do the job a little differently or take a little longer as long as the job gets done and doesn’t hold up overall production.)

Another reason for employment problems is that autistic people often just don’t interview well due to our differences in and difficulties with communication. Job interview questions are often about hypothetical situations — “what would you do if/when” — and many autistic people just aren’t good with hypothetical situations. We tend to be more concrete than our non-autistic peers. (Not all of us, by any means, but many of us.) Another common question is “Tell me about a time when….” The problem here is that an autistic person could try to find a situation that literally matches the question and may not be able to find one, or maybe they just haven’t been in such a situation, literally or not. In fact, not having a situation to describe to the interview probably isn’t exclusively an autism problem.

Another conclusion of the study was that “epidemiological” data about autism (I wish they’d just said “prevalence” of autism) is necessary so that governments can plan for educational, housing and financial support services. I support this conclusion and think it is good that governments have an accurate picture of how many autistic people will need these services. However, I have two quibbles. One is that just because people need the services does not mean they will get the services (services to people with disabilities in general are being cut left, right and centre in most countries), and the other is that we don’t need to use language like “burden” to provide this information.

My own conclusion is that first of all, people need to stop using the word “burden” to describe those of us who have physical, mental or neurological conditions. Next, in order to help us achieve our potential and not have to rely on government benefits, we need proper health care so that those who are capable of working are physically healthy enough to work. Then we need to work on ways of getting jobs without having to endure the typical job interview. Finally, when we actually have jobs, we need proper accommodations from employers so that we can keep those jobs.

That is how to stop us being “burdens.”

In my previous blog post, “Fourteen Things Not to Say to an Autistic Adult,” I said that using either autism-first language or person-first language is, or should be, a personal choice. There are some situations in which a particular version is required; for example, many disability service organizations require their employees to use person-first language. Outside of that, though, which one to use — “autistic person” versus “person with autism” — is up to the individual person.

Many people in the autism community use autism-first language, and some autism organizations encourage the use of identity-first language and discourage person-first language. As a representative of the Autism Self-Advocacy Network said, “being autistic is part of who we are. If I cannot be without autism, I cannot be with it either.”

One of the reasons I’ve been given for rejecting identity-first language is the idea that somehow, identifying as autistic means that autism is my entire identity. One commenter on the post said that saying “autistic” means that autism defines them. I say that I’m a feminist, that I’m a Christian, that I’m a woman and that I’m Canadian, to name just a few things. None of those things is my entire identity, and people don’t usually accuse me of defining myself by those terms, so I don’t know why saying that I am autistic suddenly means that is my entire identity. People say, “I am American,” “I am Canadian,” “I am French,” etc., and nobody tells them, “No, you must say, ‘I am a person with Americanness,’ or ‘I am a person with Frenchness,’” or tell them to stop making their nationality be their entire identity.

Another argument against identifying as autistic is that “you are not your autism,” and that I have to separate myself from my autism. However, I do not consider my autism to be a separate thing. It’s not like I can pack it away in a box and bring it out when I choose. It’s always there, whether I want it to be or not. Most of the time I am fine with it being there, but sometimes it can cause problems, such as when I am in a noisy environment.

One person said that using “autistic” is patronising. I have never considered it to be so, and if it is patronising it is only because the non-autistic world has made it such, including a few uses of the word in pop culture as an insult.

I do not consider autism to be a bad or a negative thing, and using person-first language makes it seem so. We use person-first to describe bad things. “He is a person with a brain injury.” “She has cancer.” “They are children with diabetes.” Yet we use expressions like, “He is nice,” and, “She is good,” and “They are charitable,” not, “She is a person with niceness,” or, “He has goodness,” or, “They are persons with charity.”

In addition to the arguments in favour of person-first language, there were also comments insisting that there should not be a choice in using person-first versus identity-first, as if we should force everybody to use autism-first language. In fact, one commenter said that it bothers them less to be threatened with murder than it does to hear person-first language. While I dislike using person-first when talking about autism, it doesn’t bother me nearly that much.

What bothers me is that some people want to take the choice away from us, whether it is the choice to use “person” first or “autism” first. Some people have a very strong preference for one or the other, while other people use both terms interchangeably. I find it a little irritating when I see or hear “people with autism” or “so and so has autism,” but I know that I don’t like being told what language to use, so I try not to pressure other people when it comes to the language they use.

I’m pretty sure that I am not going to convince anyone to change what terms they use, but I hope people will not try to take that choice away from us. If I want to the right to use the terms I prefer, then I must allow people the right as well, even if I disagree with them.

Last night somebody shared an article on Facebook. The article was called “Things never to say to parents of a child with autism.” A comment on the article asked why there wasn’t one about things not to say to an autistic adult. I decided to write that article. It’s based on not only my experience, but also the experiences of my autistic friends.

1) “You don’t look autistic.”

My response to this would be something along the lines of what Gloria Steinem said when people told her she “looked good for 50.” She said, “This is what 50 looks like.” I say, “This is what autism looks like.” However, what I’d like to say is: “I don’t look autistic, and you don’t look ignorant. I guess we’re both wrong.”

I don’t know what people who say this mean when they say I don’t look autistic. What does autism look like? If I looked at any of my autistic friends, I wouldn’t be able to say, “This person looks autistic,” if I didn’t already know they were.

Sometimes people will say, “But you look so normal.” I don’t know if that’s meant to be a compliment or not. To this I say that I am normal.

2) “You can’t be autistic because…”

This could be, “You can’t be autistic because you can talk,” “You can’t be autistic because you have friends,” “You can’t be autistic because you have a job,” or “You can’t be autistic because you are married.”

Autism is a spectrum. There are many variations among autistic people. Some are non-verbal, while others are what is known as hyperlexic, meaning they talk a lot and have large vocabularies. Some autistic people have jobs, and some don’t. Most autistic people have friends, and those that don’t usually want to have friends. Some autistic people are married, and some are not. There’s probably as wide a variation among autistic people as there is in the non-autistic population.

3) “Don’t call yourself autistic. You’re a person with autism. You must use person-first language.”

I call myself an autistic person. Many in the autism community prefer to use autism-first language. As Ari Ne’eman said, “When I go on a trip I don’t forget to pack my autism.” I’ve written blog posts before about why I prefer autism-first language. However, it is a personal preference. Some prefer to use person-first language, and others don’t. All of us would prefer to not be told what to call ourselves, especially by people who aren’t autistic.

4) “Are you like Rainman?”

Rainman was a fictional character in the movie of the same name. Rainman was portrayed as an autistic man with savant skills (savant skills are considered to be exceptional abilities by people with intellectual disabilities in the areas of “rapid calculation, art, memory, or musical ability,” according to Wikipedia.) He was based on an actual person with savant skills, Kim Peek, but Kim Peek was not autistic himself.

Most autistic people are not savants. Some are, like Daniel Tammett, author of Born on a Blue Day, but they are the exception, not the norm. Not all autistic people are savants, and not all savants are autistic.

5) “You’re autistic? Does that mean you’re retarded?”

First of all, let’s not use the “r” word. It may have once had a clinical meaning, but these days it’s used primarily as an insult. Second, does being autistic mean a person has an intellectual disability? Not always. As I said before, autism is a spectrum. There is a lot of variation among people on that spectrum. Some people have intellectual gifts, while others have intellectual disabilities. Most of us fall somewhere between those two. Many autistic people have normal to above-average IQs and have learning disabilities at the same time, which may mask their true abilities. Finally, many of us simply don’t learn the same way as non-autistic people, and we may have trouble with an educational environment that is not set up for people like us. That can cause us to be labelled as “retarded” or “disabled” when we’re not.

6) “You’re too intelligent to be autistic.”

Again, there is much variation among people on the autism spectrum. Some of us have low IQs, some of us have superior IQs, and most of us fall somewhere in between. Intelligence is not a diagnostic criterion for autism.

7) “You’re not autistic. You just have Asperger’s.”

Asperger’s Syndrome is a condition that is on the autism spectrum. The latest version of the DSM, the diagnostic manual for mental disorders, has done away with the Asperger diagnosis in favour of simply using “autism spectrum disorder.”

8) “You must be high-functioning.”

Functioning labels are not useful. They are an artificial means of trying to classify people into rigid and discrete categories. Nobody is 100 percent “high-functioning” or 100 percent “low-functioning.” Some people can change their “functioning” levels within the space of a few hours depending on their energy levels or the environment they’re in. To paraphrase Laura Tisoncik, when you’re labelled low-functioning your abilities are ignored, and when you’re labelled high-functioning your needs are ignored. There are no specific, definable criteria for what is “high” and what is “low” functioning.

9) “I know an autistic person, and you don’t act like he or she does.”

What I would like to say: “I know a neurotypical [non-autistic] person, and you don’t act like he or she does.” Again, I bring up the words “spectrum” and “variation.” When you’ve met one autistic person, you’ve met one autistic person.

10) “You don’t act like you’re autistic.”

There are two possible answers to that. One is that I am acting like an autistic person, and this is how this particular autistic person acts. Again with the spectrum and the variety of people within it.

Another answer, though, could be that I am currently expending all my energy to specifically not act like an autistic person. I could be at work or in some other situation in which it is important to act a certain way — not stimming, not talking about my special interest, trying hard to make eye contact — and I am currently doing my “mimicking the neurotypicals” act. When I am alone or in a more autism-friendly environment, them I will probably act more autistic.

11) “You’re just saying you have Asperger’s to get away with being rude.”

I’ve had that accusation levelled at me, as have many of my friends. Oddly, it is often levelled at us when we are NOT being rude. I’ve heard that there are people who say they have Asperger’s as an excuse for being rude, but I’ve never encountered any of these people. If you read the comments for any YouTube video or news article online, you’ll encounter plenty of rude people who don’t claim to have Asperger’s at all.

Generally, I’ve found that if a person who has Asperger’s does accidentally offend someone, they are genuinely sorry for it. An Aspergian person may use Asperger’s as an explanation for rudeness but not an excuse, the difference being that the person using it as an explanation will apologize and try to learn from the experience so that they don’t do it again, while the person using it as an excuse will refuse to take responsibility, won’t apologize and won’t care if they do it again.

12) “My friend’s/neighbour’s/second cousin twice removed’s child had autism, but they put him on a special diet and he got better.”

Some autistic people have food allergies, sensitivities or intolerance. Some are sensitive/allergic to gluten. Some are sensitive/allergic to dairy. Some are sensitive/allergic to other foods or ingredients in the food. In those cases, their behaviour improves once they stop eating the foods that make them sick. That doesn’t mean they are no longer autistic. It just means they are feeling better than they were when they were ingesting substances that made them sick.

In other cases, parents put their child on a gluten-free/dairy-free diet because they’ve been told that all autistic children should go on that diet. Their child is in therapy at the same time, and if the parent sees an improvement they may credit the diet for it rather than the therapy.

13) “You can get over it. It’s just in your head. It’s not physical.”

This is often said to people suffering from depression or anxiety as well as to autistic people. Apparently when something is in your head, other people think it somehow isn’t real, hence the saying, “It’s all in your head.”

Autism causes neurobiological differences in the brain. There are actual physical differences in the brains of autistic people, so it actually is physical.

Certainly, the right kind of therapy and support can help autistic people, but that doesn’t mean we are “over” our autism. We can learn to manage our symptoms, but autism is always there.

14) “You seem so normal!” “I can’t believe you have autism!” “You are doing really well, so you must be so proud of yourself.”

What can I say to these? Am I proud of myself? Yes, I am proud of myself for my accomplishments — getting a university degree, keeping the same job for 12 years, buying a house, maintaining a long-term relationship. However, as I said in response to the first item on the list, autistic people can and do achieve all of those things. “You seem normal!” That is because I AM normal. “I can’t believe you have autism!” Well, believe it. Autistic people can accomplish many things that were once believed to be impossible for us, and we will keep on achieving them.

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.

Follow

Get every new post delivered to your Inbox.

Join 1,773 other followers