Life on the Spectrum

Archive for August, 2014

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.”

Person-first Language, Self-Identity and Personal Choice

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.

Fourteen Things Not to Say to an Autistic Adult

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.