Life on the Spectrum

The headline reads “Federal Government Appoints New Autism Spectrum Disorder Working Group.” The aims of this group are “information sharing and research, early detection, diagnosis and treatment, and ways to support Canadian families affected by ASD.” Notice that it says “families affected,” not “autistic people.”

The members of this group are scientists, researchers, and heads or board members of various autism groups such as Autism Canada, Autism Speaks, Canadian Autism Spectrum Disorder Alliance and Autism Nova Scotia. There are no representatives from Autistic Self-Advocacy Network or other groups that represent autistic people ourselves rather than parents. In fact, there are no autistic people in this autism working group.

This is, sadly, not unusual. Autistic people are very seldom consulted by any government agency or autism service organization when they are making plans for us, if they actually are making plans for us and not just for autistic children. I have Tweeted to the federal minister responsible for this working group, the hon. Rona Ambrose, and I have left a comment on her announcement on her Facebook page, but I haven’t heard anything in response, probably because she, like everyone else in the federal government, is currently preoccupied with the upcoming election in October.

I don’t object to early detection of autism, nor do I object to support to families. However, I think there are many more goals that an autism working group could have rather than just support for families or just early detection and treatment. For example, how about working on the fact that the vast majority of autistic adults are unemployed and live in poverty? How about the fact that there are almost no support services for autistic adults once we leave our family homes? How about the fact that most so-called autism service agencies have no autistic people on their boards of directors?

If they want to work on diagnosis, how about creating and funding diagnostic services for those who were not diagnosed as children? There are many, many undiagnosed autistic adults out there who are unable to find anyone able or willing to assess an adult, and if they can find someone, they can’t pay for the assessment because the province they live in does not fund such services for adults.

The announcement about the working group is here. I encourage autistic adults living in Canada to contact the group and Minister Ambrose. Suggest what you would like to see addressed by this working group. Challenge the minister to add autistic self-advocates to the group. Her e-mail address is rona.ambrose@parl.gc.ca. Her website is ronaambrose.com. Her twitter is @RonaAmbrose. There is also contact information for the group at the link above.

I am planning to go on a trip in a few weeks. This has, as is usual with me, kicked my anxiety into overdrive. I am in my 40s, and I have never been on an airplane in my life. Everything I have heard about airport security being suspicious of anyone who acts nervous in the slightest way has made me seek out information and tips for traveling while autistic. What are airports like in terms of sensory input? Will it bother airport security if I have trouble making eye contact? Do I have to let them touch me? What if my auditory processing issues make me miss the announcement for my flight?

There is almost no information available for adult autistics when it comes to travel. Do a Google search for “flying” or “traveling” and “autism” or “Asperger’s,” and you’ll find “tips for autistic travelers and their families,” and “flying with your Asperger’s child” and “information for families of children with special needs.” It’s even worse for non-Americans, because most of the information that is available makes reference to the TSA and the Americans with Disabilities Act, which are not relevant if you’re not traveling to or in the U.S.

Guess what. Autistic people travel. We go on holidays just like non-autistic people (those who can afford to do so, at least). We travel to autism conferences and/or to conferences related to our special interests. Some autistic people travel on business. There are autistic people who are in demand as speakers and lecturers who have to fly to the places they give their lectures. So why is there so little information? I can only guess that it’s because if an autistic adult is able to travel on his or her own, he or she must be considered to be “high functioning” and therefore assumed to not need help. I was even told that there is information for children and not adults because adults, being adults, don’t need any help with such routine, everyday things as getting on an airplane.

Fortunately, I was able to find help from a fellow Aspergian person who has experience with air travel, and some help from Westjet airline. The answers to my questions were as follows:

“What are airports like in terms of sensory input?” I was told I should bring my earplugs, because airports are noisy places, but not to use them unless absolutely necessary so that I can hear the security agents speak to me and so that I can hear when my flight is called.

” Will it bother airport security if I have trouble making eye contact?” It might, but if I explain to them that I am autistic they will probably understand. If I am able to do so, though, I should try to make eye contact. It’s a big thing to demand of an autistic person, but it may be necessary.

“Do I have to let them touch me?”  Because I am flying within Canada and not internationally, I probably won’t be patted down as long as I do not have anything metallic on my body. I should make sure that I don’t wear an underwire bra.

“What if my auditory processing issues make me miss the announcement for my flight?” If I identify myself as a person with a disability, I should be permitted to bring a person with me into the terminal who can listen for me. On the airplane, I can request written copies of in-flight announcements, like the safety briefing.

I’ve been told it’s a good idea to have some handouts about autism ready to give to people who may have questions.

My chosen airline, Westjet, has a lot of information and support available for customers with disabilities, and I will contact them a few days before my flight to touch base and find out if there is anything they can do to make my trip easier for me.

My biggest anxiety now is actually booking my flight and making it to the airport. Whenever something causes me anxiety, I actively avoid doing it, even if it’s something positive. My trip makes me nervous, so I’m still putting off buying my plane ticket. I’d better do it soon, because I have already paid for a three-day sightseeing package at my destination.

Once I return from my trip, I hope to have more information available for my fellow autistic travelers to help others who have the same questions I have.

As I said in a previous post, I don’t think we need any more autism awareness. One of the things we do need is autism acceptance. What is autism acceptance, though? What does it look like?

Autism acceptance means not trying to make an autistic person act like a typical person. It means allowing us to have our stims, as long as they’re not hurting us or anyone else, and allowing us to avoid making eye contact if it’s difficult.

Autism acceptance means not saying, “I love my child but I hate his/her autism.” It means accepting your child, autism and all.

Autism acceptance means making accommodation for our sensory needs and allowing us to wear earmuffs or headphones in noisy environments, turning off the fluorescent lights, allowing us to wear comfortable clothes instead of expecting us to wear ties or frilly blouses or, heaven forbid, pantyhose.

Autism acceptance means accepting our desire to not be cured. It means not seeing us as broken or defective or needing to be fixed.

Autism acceptance means using autism-first language when referring to an autistic person rather than insisting on person-first language if that is what the autistic person uses. It means accepting our self-identification as autistic people and not insisting that “you are not your autism” or “you are a person before you are autistic.”

Autism acceptance means acknowledging the existence of autistic adults and not limiting your autism “awareness” to children. It means accepting autistic adults into your autism organizations, and it means funding programs and services that benefit autistic adults as well as autistic children.

Autism acceptance means listening to autistic people when we talk about our lived experience of autism rather than ignoring us in favour of autism “experts” and autism parents (except for autism parents who are themselves autistic, of course.) This includes listening to people who use assistive communication devices instead of dismissing them for being “low-functioning.”

Autism acceptance means accepting autistic people regardless of so-called functioning labels. It means not dismissing the opinions and contributions of autistic people for either being too high-functioning — “you can write a blog post so therefore you are too high-functioning to understand what life is like for my child” — or too low-functioning — “you are low-functioning so you can’t possibly understand what I’m talking about.” In fact, autism acceptance should mean not using artificial functioning labels at all.

Autism acceptance means accepting autistic people as we are, and not how you think we should be or how you want us to be.

April 2 is worldwide Autism Awareness Day, but I don’t think we need any more autism awareness. I am pretty sure that most, if not all, of the developed world is already aware of autism. What we need more of is autism acceptance, autism inclusion and autism education.

Most people are aware of autism, but unless they are on the spectrum or have friends or family members members on the spectrum, few of them know anything about autism. They probably think all of us are like Rainman, or like Sheldon on the Big Bang Theory.

I was diagnosed with autism about ten years ago, but I spent many years before that trying to find a professional who could properly assess and diagnose me. I first went to my GP. I asked him, “Who in Victoria can do autism assessments? I believe I have Asperger Syndrome.” My doctor said, “But you’re too intelligent for that.” Maybe my doctor was aware of autism, but he definitely didn’t know much about it.

I went to a psychologist and asked him if he could do an autism assessment. He read out the DSM-IV description of Asperger Syndrome and proceeded to inform me, after he’d spoken to me for a grand total of 15 minutes, that I didn’t fit the criteria, and that any social skills problems I had were my parents’ fault. Then he told me that I couldn’t be autistic because I’m a girl, and girls aren’t autistic. This person is a professional, but he sure doesn’t know much about autism. I guess he’s never heard of Temple Grandin.

A while back I was out with some friends and I happened to meet a woman who works with autistic children. “I’m autistic,” I told her. “I have Asperger Syndrome.” The woman saw that I was with some friends and said, “You’re too social to have Asperger Syndrome.” If this person knew more about autism, she would know that people with Asperger Syndrome or autism are perfectly capable of having friends.

I own many t-shirts with sayings on them about autism. One day I was in the grocery store and a woman asked if she could read my shirt. After she read it, she asked: “Who do you know that has autism?” I told her that I’m autistic. She said: “You don’t look autistic.” What does that mean? What does autism look like? I’m autistic and even I can’t tell just from looking whether another person is autistic. I am guessing that this woman is aware of autism but doesn’t know much about it, or she would know that there is no such thing as “looking” autistic.

These kinds of attitudes are common. I’m sure many of you have experienced them to with yourselves or your autistic friends or family members. There are so-called professionals saying that women aren’t autistic, that we don’t have friends or that we can’t be on the spectrum if we’re smart. This is why we need more autism education.

If you find that you want more autism education, please get your education from an autistic person. There are many blogs, websites and Facebook pages written by autistic people, as well as many books. Once we have more autism education, then I hope that will lead to more autism inclusion and autism acceptance.

Often when I tell a person that I am autistic, they immediately ask if I have Asperger’s. Sometimes people tell me that I am not really autistic; I merely have Asperger’s.

One of the most common questions on the various autism or Asperger groups I belong to on Facebook is: “What’s the difference between autism and Asperger’s Syndrome? Is there a difference?” I would say that on paper, there is a difference; in reality, not so much.

On paper, before the changes in the latest edition of the DSM, the difference between autism and Asperger’s was speech. People who had delayed speech in childhood were usually diagnosed autistic; those who had normal or early speech were usually diagnosed Asperger. I say “usually” because this is not always the case. I know one person who had early speech in childhood who was diagnosed with autism. She is very defensive about this because most people assume she has Asperger’s (I imagine these are the people who see autism as requiring some sort of intellectual disability) and may even argue with her about it. I also know one woman who was convinced she had Asperger’s and who was given a diagnosis of autism.

This is one of the reasons I say that in reality, there is no difference between autism and Asperger’s. When I was first diagnosed with Asperger’s, I sought out online support groups because, at the time, I didn’t know any other Aspies in real life. I found most groups had a mixture of those diagnosed autistic and those diagnosed Asperger’s, and while there were, of course, differences among people (because no two people are exactly alike), there were no significant differences between those with one diagnosis and those with the other diagnosis. I also found I had just as much in common with those diagnosed autistic as I did with my fellow Aspergians.

Many people were concerned about losing their diagnosis of Asperger’s when the DSM folded it into autism spectrum disorder. I personally prefer not having a distinction between the two, because Asperger’s has always been considered to be a condition on the autism spectrum. Some people do not consider Asperger’s to be the same as autism and have even argued for it to be a distinct diagnosis, but seeing all that I have in common with people with the autism diagnosis, and knowing that my friend who showed what are normally considered symptoms of Asperger’s was diagnosed with autism, is enough to convince me that Asperger’s and autism are really not different at all.

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.

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