Life on the Spectrum

I don’t often watch sitcoms, but I keep hearing people tell me that I absolutely have to watch The Big Bang Theory because one of the characters, Sheldon Cooper, seems to be autistic. I decided to look up some quotes from Sheldon to find out more.

When Sheldon’s friend Leonard says to Sheldon, “It won’t kill us to meet new people,” Sheldon says that it could kill them, because they could meet a serial killer or somebody who is carrying an exotic disease.

When Sheldon hears the term “friends with benefits,” he says that it sounds like one of them should be providing the other with health insurance.

When asked how he feels about Facebook, Sheldon says that he’s a fan of anything that replaces human contact.

One time, Sheldon is working when there’s a knock at the door. Leonard asks, “Sheldon, would you like to get that?”

“Not particularly,” Sheldon replies.

“Sheldon, can you get that?”

“I could, if somebody asked me.”

“Sheldon, would you please get that?”

“Of course. I don’t know why you have to make it so complicated.”

The producers of The Big Bang Theory won’t say in the show that Sheldon is autistic, because people would not feel comfortable laughing at autism. Autism isn’t funny.

I disagree. I think autism can indeed be funny. I would prefer it ,though, if people were not laughing at me but laughing along with me when I see the funny side of autism.

Many of us autistic people take things literally. When you think about it, why don’t more people take things literally? Obviously, if you say, “It’s raining cats and dogs,” you don’t mean that small furry animals are literally falling from the sky, but why do we say that in the first place? It’s a silly thing to say!

I heard somebody say that they didn’t believe in flu shots, and they weren’t happy when I pointed out that it was very obvious that flu shots exist, because the pharmacy had a sign that said you could get flu shots there.

My partner asked me why I didn’t phone my mother on her birthday. I said “Because I sent her a card, and she told me that I don’t have to phone her if I send her a card.” My partner said, “She probably didn’t mean it that way.” I asked, “If she didn’t mean it, why did she say that?” He said, “Oh, this is an autism thing! You’re being literal!”

A friend of mine took her autistic son to the doctor because he had a cut that had become infected. The doctor wrote a prescription on a piece of paper, handed it to the autistic boy and said, “Put this on your cut twice a day.” The boy wanted to know how it would help him to put a piece of paper on his cut.

A common joke on autism pages on the Internet is “You know you’re autistic when…” For example, you know you’re autistic when you’re planning to go out, but you wait until none of your neighbours is outside before you do, because you hate to make small talk. You know you’re autistic when your grocery shopping takes twice as long as it does for other people because you’ll only walk down the aisles that don’t have people in them. You know you’re autistic when there’s a particular coffee shop you like to go to, you always sit at the same table, and there better not be anybody sitting at your table when you go there, because it will mess everything up. You know you’re autistic when you know the names of all the cats and dogs in the neighbourhood, but none of the people. You know you’re autistic when you read that a band that bills themselves as “the loudest rock band in the country” is going to be playing an outdoor concert in your city, and you decide that you should go out of town that day.

Sometimes humour can help me deal with people who have misconceptions about autism. I used to love to read Mad magazine’s “Snappy Answers to Stupid Questions.” I have made a list of what I call snappy answers to stupid things people say about autism.

Sometimes people will say that I am not really autistic, and that I am using autism as an excuse to be rude. If somebody says that to me, I’m going to ask them what their excuse is for being rude. If they say that I have to call myself a person with autism instead of an autistic person, I will respond by calling them a person with rudeness.

People will say to me, “You don’t look autistic.” If somebody says that to me, I will say, “And you don’t look ignorant, so I guess we’re both wrong.”

I have had people say that I am too intelligent to be autistic. That’s when I say, “And you are too intelligent to be so uninformed about autism.”

Autistic children can be funny and be self-advocates at the same time. When I was at a conference, I heard the story of an autistic boy who wanted to ride the school bus with all the other kids in his neighbourhood, but the school district had health and safety rules that said he had to take a taxi to school. Every day, he would watch the other kids get on the bus, and he would say “Bus.” His mother would take him to the taxi, and he would say, “No, bus.” One day, he finally got tired of the grownups not listening to him. When the taxi arrived at school, the taxi driver got out of the car to open up the door for his passenger. The boy then locked all the doors in the cab, locking the driver out. This was in the Yukon in winter time. The driver, the school teachers, and his mom all asked him to unlock the doors, and he continued to say, “No. Bus,” until they finally agreed that yes, he could ride the bus.

Finally, here is my favourite autism joke:

A man is flying in a hot air balloon, and he’s lost. He lowers himself over a field and calls to a someone in the field. “Can you tell me where I am and where I’m headed?”

“Sure. You’re at 41 degrees 2 minutes and 14 seconds North, 144 degrees 4 minutes and 19 seconds East; you’re at an altitude of 762 metres above sea level, and right now you’re hovering, but you were on a vector of 234 degrees at 12 metres per second.

“Amazing! Thanks! By the way, are you autistic?”

“I am! How did you know that?”

“Because everything you said is true, it’s much more detail than I need, and you told me in a way that’s no use to me at all.”

“Really. Well, are you a clinical psychologist?”

“I am, but how the heck did you know that?”

“You don’t know where you are. You don’t know where you’re going. You got where you are by blowing hot air. You put labels on people after asking a few questions, and you’re in exactly the same spot you were 5 minutes ago, but now, somehow, it’s my fault!”

Once upon a time, there were ads for Trix cereal in which a cartoon rabbit kept trying (and failing) to get his paws on some Trix. At the end of the ad, a child would announce, “Silly rabbit, Trix are for kids!” Sometimes I think the world of autism is like those ads, and autistic adults are treated like the silly rabbit.

A couple of years ago, the mother of an adult autistic son posted in an autism group on Facebook that I was a member of. The mom wanted to know how to find a girlfriend for her son. He already had a girlfriend, but Mom didn’t like her and wanted to find him another one.

“Why don’t you let him find his own girlfriend?” I asked.

I was immediately set upon by a number of “autism parents” who informed me that I must not know anything about autism, because if I did, I would know that it is impossible for autistic adults to find their own romantic partners without the assistance of their parents.

I informed them that I’d been in a romantic relationship for more than a decade (and had been in a number of relationships before that) and that my parents had not helped me pick any of my partners. Then I left the group.

This is, unfortunately, a common attitude among those who describe themselves as “autism moms” and “autism dads” who are not themselves autistic. They believe that those of us who are autistic adults have nothing to offer the parents of autistic children. This even extends to when these “children” are adults, as in the example above.

There have been many times that I’ve tried to offer my perspective on autism issues, only to be shot down by parents who declare that I am nothing like their child. My response to that is usually to say that of course I am nothing like their child now, as I am an adult, but I was a child once myself, and I had plenty in common with their child then. However, often the fact that I am able to participate in on line discussions is enough to make a parent declare that I am much too “high functioning” to give them advice about their child, even though they have never met me and have no idea how well I function in society.

All of us who are autistic adults were once autistic children. Even if we appear to “function” at a different level than a given autistic child, we still had, and may still have, many of the same issues as today’s autistic children, including some or all of the following: sensory issues; social skills problems; problems making and keeping friends; motor skills challenges that made it hard to participate in gym class or hold a pencil properly; and bullying. So why won’t parents listen to us?

I think one of the problems is that there are parents who disagree with autistic self-advocates on some fundamental issues, such as the idea of a cure. Parents who want their children to be cured won’t listen to an autistic adult who doesn’t want to be cured. Parents who insist on using person-first language may not listen to an autistic who insists identity-first language. Parents who consider autism to be a horrible curse that they must be rid of probably aren’t going to listen to autistic people who celebrate their autistic identity.

There are some parents who do listen to us. There are some parents who advise other parents to listen to us. I wish more of them would. I wish we could find more common ground. I hope that when today’s autistic children become autistic adults — and they will; there’s no doubt about that — they will find a world that has been made easier for them thanks to the efforts of today’s autistic adults.

Many (too many) autistic kids, and even autistic adults, are bullied. This is sadly the case in many schools and workplaces. Those who are different, who don’t fit in, are mercilessly picked on. Bullying leads to low self-esteem; poor self-confidence; bad grades; poor school and work attendance; long-term mental health issues, including PTSD; and, in some cases, suicide. I personally was bullied throughout my school years, as well as after school, at summer camp and even at vacation Bible school.

I was therefore astonished to discover an article published in the Autism Daily Newscast, written by Karen Kabaki-Sisto, entitled “Ten Perks Kids With Autism Get From Being Bullied.” Yes, according to this article, there are perks to being bullied! I just had to read the article to find out what these supposed perks are. Here is the article.

One of them is the opportunity for a school to promote autism awareness. This is actually a perk for the school more than for the autistic student, but shouldn’t a school already be aware of autism if there are autistic students in the school? I doubt the bullies care much about autism awareness, and more awareness of autism is not going to magically stop them from bullying autistic kids or any other kids.

Kids are supposed to gain skills from bullying. Being bullied will promote better verbal skills, according to this article, as kids learn how to respond to their bullies. From discussing this with others who have been bullied, I’ve learned that the  bullying is more likely to hinder a child’s verbal skills as they become so traumatized they talk less, or they are so afraid of being made fun of for what they say, they don’t say anything at all. I personally developed a stutter for a couple of years due to trauma.

Bullying is supposed to also help a child gain independence, survival skills and civil liberties, but the article doesn’t outline how exactly this is supposed to happen. I guess finding a quiet, deserted part of the school in which to hide from the bullies at lunchtime, as I did, is part of those survival skills. In a twisted way bullying did increase my independence, as it taught me that I couldn’t rely on anyone to help me, certainly not the school principal or vice-principal or any of the teachers or counsellors, so I had to depend only on myself. It definitely didn’t do anything for my civil liberties, though.

Bullying is supposed to help an autistic child make friends, as the non-autistic kids are supposed to help watch out for the bullied autistic kids, and this will lead to friendships. Perhaps this is a program held at some schools? I’ve never heard of it. But a friendship made this way is not a real friendship. It’s more of a job than anything else, and not a job that should be given to elementary school kids. It should be up to the adults to protect kids from bullies, not other kids.

Overall, the skills the autistic child supposedly learns from being bullied — self-reliance, communication skills, civil liberties, good citizenship, awareness of stranger danger, and survival skills — will all add up to improved self-esteem. Pardon my language, but I say bullshit. I lived through bullying from kindergarten through grade 10, and I came out of it with poor communication skills, little awareness of danger, marginal survival skills and horrendously low self-esteem. I went through multiple unhealthy “friendships” and relationships with abusive people, and I thought I deserved the abuse. It took me until I was in my 30s and diagnosed with autism to start to climb out of the abyss, with the help of counselling and life skills coaching.

I hope that this article is not read by any of the many bullies out there. I’m afraid they may take it as implicit permission to bully autistic kids.

A few weeks ago I wrote a post about travelling while autistic. I mentioned that there were many blogs and articles about helping autistic children while travelling, but very little about travel for autistic adults. I was planning on a trip to visit my cousin and also a trip to see the Rocky Mountains, and since I had never been on an airplane before, I was concerned about what to expect.

Happily, my airplane flight was uneventful, aside from my nervousness about being so high in the air. Here is what I learned.

I found that I preferred to have a paper boarding pass to having a virtual boarding pass on my phone, because I didn’t know where my phone stored the boarding pass, and when I wanted to kill time by browsing Twitter or Facebook I “lost” it and had to download it again. There are electronic kiosks where you can check in and print out your boarding pass.

There were many helpful people in both the Victoria airport and the Calgary airport who directed me to each place I had to go: the check-in for my flight, the baggage check, the security scan and the departure lounge.

I had to give up my Swiss army knife. I completely forgot I had it in my purse, and I didn’t want to go to all the trouble of returning to the baggage check and opening my suitcase, so I surrendered it. Now I wish I’d gone back to baggage check, but I didn’t want to risk being late for my flight.

I personally didn’t find the airport to be uncomfortably noisy. Your mileage may vary.

I had no trouble with my insulin or syringes. I had people ask what my Omnipod (insulin pump) was, but once I explained it, as well as my insulin and syringes, I had no trouble. I just told the security screeners, “I am a diabetic. I am carrying insulin and needles in my purse,” and, when asked, explained my Omnipod. I didn’t even have to offer proof of my diabetes or provide prescriptions for the insulin or needles. However, I took a domestic flight; an international flight could have different rules.

I didn’t have to worry about eye contact. I didn’t even have to take my shoes off. I walked right through the security gate with no beeps. I wore a sports bra with no metal on it, my Omnipod is made of plastic, and I guess the eyelets on my sneakers were either not metal or not enough metal to cause an alarm. Since I made it through the gate, I didn’t have to submit to any questions or further examination, though I know that there is always a possibility of being pulled aside for a check at random.

I also didn’t have to worry about my auditory processing difficulties making me miss my flight announcement. Once I was in the boarding lounge, my flight was announced in person by the Westjet agent and not from a loudspeaker, so I didn’t have any problems with garbled announcements. On my first flight I asked the agent for clarification so that I knew what was expected of me, and on the flight home I didn’t need to ask because it was the same routine.

Basically, my advice for my fellow autistic people would be to ask lots of questions when you are at the airport so that you know where you have to go for each step of the process, and if possible visit the airport ahead of time so that you know ahead of time where you have to go to. Try to pack light, because they will weigh your suitcase and charge you more if it exceeds a certain weight (I think it’s 50 pounds, but it may be 40.) If you don’t absolutely have to do so, don’t carry any liquids with you before you go through security; you can buy drinks — even Starbucks at some airports — after you go through security. Those who wear a bra should wear a sports bra. Wear slip-on shoes or light canvas ones; ideally, shoes without laces. You will be expected to put your carry on luggage and personal items on a conveyor belt to be x-rayed, and if you have a laptop you will be expected to open it. Don’t take any knives in your carry-on bag or purse. There will be a place to measure your carry-on bag to make sure it fits in the overhead compartment; I had to remove my e-reader and tablet to make the backpack fit, but I was able to carry those in my hands when I boarded the plane, and I just put them in the seat pocket when I was on the plane. If you have a purse, you will have to put it under the seat ahead of you when you are on the plane. If you are afraid of heights, don’t get a window seat, or, if you do, pull the shade down.

If there is something you don’t understand, there will be plenty of people at the airport that you can ask. I know that talking to strangers can be hard, so if you think you may have trouble, find out if you can take a disability support person with you. Contact the airport and/or the airline. I know that Westjet was able to find an employee with type 1 diabetes to answer my questions about my diabetes supplies, and they were able to find a person who has anxiety to help a passenger who suffered from anxiety, so they are good at supporting people with disabilities.

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.