Surviving the Holidays

It’s December, and for many people, that means it’s time to get ready for Christmas. The holiday season is in full swing. For many people, this is a fun and happy time. For some autistic people, though, it can be difficult.

Non-autistic people may not understand why their autistic friends or family members have a hard time at Christmas. This can cause difficulty if an autistic person doesn’t want to attend a particular holiday party or has a hard time at a family gathering. Let me try to explain some things that an autistic person might have trouble with at Christmas time.

First, many autistic people have routines. We like our routines. During the holiday period, routines tend to be disrupted. Those who have jobs will probably have at least a few days off between Christmas and New Year’s Day. While most people enjoy having time off work, it can be disruptive to somebody who likes their routine. Add to this the fact that many things we’re used to doing might be cancelled or have their dates and times changed. A coffee shop where you’re used to getting your morning coffee might be closed on Christmas Day. If you have friends you get together with on a regular basis, they might go out of town for a holiday, or they might have family coming to visit, and they may not be able to see you. Even a simple thing like always doing your grocery shopping on the same day of the week may not be possible if the store is closed that day, or the stores might be more crowded and busy than usual due to people doing their Christmas shopping, which triggers anxiety for many people. Having our routines disrupted can throw us completely off balance.

Then there is shopping. Online shopping has, fortunately, helped with this, but if you don’t have a credit card to do your shopping with, or the item you want isn’t available online, then you probably will have to brave the shopping mall. Shopping malls can be unpleasant to autistics at the best of times; they’re a hundred times worse during Christmas shopping season. They’re crowded, noisy, and hot. If you’ve bundled up for cold winter weather outside, you’ll be melting once you get into that crowded mall. As I said, crowds can be big triggers for people with anxiety, and that includes autistic people.

Holiday parties are traditional at this time of year, and many of us on the spectrum have trouble with them. Loud music, unfamiliar people, unfamiliar food, alcohol, and small talk combine to become an autistic’s worst nightmare. Autistic children may be expected to let unfamiliar relatives hug and kiss them. Autistic adults may feel obligated to sit and make awkward small talk with people they barely know. Someone who was diagnosed (or self-diagnosed) later in life may have a family that is unfamiliar with autism who may not accept the diagnosis. Family mealtimes may be awkward if the autistic person is on a special diet, for example gluten-free or casein-free, especially if the person has been on that diet for only a short time. Other autistics have trouble with certain food textures, which can be hard to explain to those who are not on the spectrum.

How can we make the holiday season easier?

We probably can’t do anything about businesses that are closed or friends who are travelling or having people visit them. We can’t change the atmosphere of a shopping mall. But there are things we can do.

First, find out who will be available during the holiday season if you need somebody to talk to. If you have an autistic friend or sympathetic non-autistic ally, talk to them before the stressful time starts and ask if they will be around to accept a phone call, a text message or an e-mail from you. Those who are out of town might be able to stay in touch by e-mail, but don’t pin all your hopes on it. If none of your local friends are available, talk your your online friends. For many of us, our online friends are indeed our “real” friends, and ideally there will be somebody around during the holiday season to lend some virtual support, even if they can’t be there in person.

If you have shopping to do, you may be able to do it online if you don’t have a credit card. Some online merchants accept PayPal or online debit/Interac, and many banks now offer prepaid “credit” cards that you can use to shop online without going into debt. If you absolutely have to shop in person, do it before the rush starts (before American Black Friday) if you can. If you can’t, try shopping early in the morning or late at night. Some locations of Wal-Mart stay open 24 hours a day in the holiday season, and it’s less likely to be busy in the middle of the night. If having somebody with you makes things easier, try to enlist a friend or supportive family member to go with you. See if you can identify a place in the shopping centre that is less crowded where you can go if you get overwhelmed. If you or the person you are shopping with has a vehicle, you could go sit in the vehicle to recover.

Holiday parties. Some people like them. Some don’t. If you’re one of the ones who doesn’t, it may be best to just skip them. If you can’t — for example, it’s a work-related party — then try to plan some survival strategies ahead of time. Don’t get drunk. One or two drinks to help you relax are okay, but alcohol can make you do stupid things, so keep a limit on how much you consume.

Find out if there’s a place you can escape to if the party gets to be too much, even if it’s just the bathroom. Offer to help prepare and/or clean up so you can hide out in the kitchen. Ask politely if the volume of the music can be turned down. Say that it makes it hard to talk if it’s too loud. (It’s the truth!) If you’re on a special diet and are worried that you won’t be able to find food that fits your diet, eat something ahead of time so that you’re not hungry, or find out if you can bring your own food.

Small talk is the bane of our autistic existence, but it has to be done. There are some safe topics for small talk, such as the weather, a local sports team, people’s pets and children, or job-related topics if it’s a work event. Start working on this before it gets to be holiday party time. Make mental notes (or if you can do it surreptitiously, notes on your phone or on a piece of paper) about the people you work with. Who has kids, and are they boys or girls? Who has a dog or a cat? Who went on a trip recently? Ask open-ended questions. Instead of, “Do you have any plans for the holiday?” ask something like, “What are your plans for the holiday?” A tip: talking about the other person is almost always welcome. If somebody is wearing a particular piece of jewelry or scarf or tie, complimenting them on it is a good ice-breaker.

When it comes to our families, sometimes we just have to deal with them. Don’t force kids to hug and kiss people they barely know. Don’t feel obligated to do it yourself. Small talk rules work on relatives too, as do compliments. If you’re on a special diet, ideally, your family will know. If they don’t, contact the host ahead of time and let them know.

If you think you may have to leave the party before it’s over, try arranging a signal with somebody who’s not at the party/family gathering so that they can call or text you and give you an excuse to leave.

Holidays are supposed to be happy times, but even non-autistic people have trouble with them. You’re not alone. I hope that we all have good holidays and a great new year.

What is Dyspraxia?

As I have said many times in this blog, I was diagnosed autistic (Asperger) as an adult. It wasn’t until some time later that I learned of the many conditions that can exist along with autism. One of them that I am quite sure I also have is dyspraxia.

Dyspraxia, also known as Developmental Coordination Disorder, is a condition that sometimes occurs along with autism. It is a common cause of executive function problems and may be mistaken for ADHD. Sometimes it is called “clumsy child syndrome” because motor skills problems that cause clumsiness are a common feature of dyspraxia.

Common features of dyspraxia are clumsiness, absent-mindedness, poor handwriting, difficulty following instructions, difficulty putting things into a sequence, and poor short-term memory. As with autism, dyspraxia/developmental coordination disorder is more often diagnosed in boys, possibly because it is more easily seen in sports when a child has difficulty kicking, throwing and/or catching a ball. While girls do play sports, difficulties in sports are more often attributed to such things as “throwing like a girl” than to a problem like dyspraxia. Kids with dyspraxia may be late for school, forget their books and their lunches, and have trouble following instructions in sequence such as “Take out your math book, read pages 9 and 10, and do questions 2 through 6 on page 11.”

When I was a child, I was sent to what was called “learning assistance” because I had difficulty holding a pencil and cutting with scissors. My printing and handwriting were always the bane of my teachers’ existence. I was constantly being told that I wasn’t holding my pencil or pen properly, and I could never draw a straight line, even with the help of a ruler. I still remember a grade 7 research project in which I struggled to copy, by hand, a picture from a book, only to have the teacher call it “the worst picture I have ever seen.”

Of course, gym class was a nightmare. I was the last in every race I ran. The one time I played goalie in a hockey game, I scored in my own goal. A game that was frequently requested by my classmates required everybody to stay on a course that had been laid out with floor mats in the gym, and I seldom was able to stay on the course for more than a few short minutes. I passed gym only because I did my best to get “participation” marks.

Outside school, I learned to ride a bike much later than my peers. I was constantly falling down and it seemed like my knees were always skinned. I stepped on people’s toes both literally and figuratively. My bedroom was something close to a disaster area. My clothes were always dirty and rumpled, no matter how often my mother washed or ironed them. I was late to everything. I probably broke quite a few dishes as well as toys. I remember when I got a job at a clothing store, and my father said, “Well, at least you can’t break clothes.” I sprained my ankle merely by trying to get out of bed to answer a ringing phone. (Thank goodness for cordless phones. I also broke a radio when I knocked it over in a hurry to get to a ringing phone that had jarred me out of bed.)

As an adult, dyspraxia has even caused me to have problems in romantic relationships. I was once “volunteered” by my then-girlfriend to help one of her friends paint a room. Of course, I did a terrible job. My girlfriend accused me of doing a bad job on purpose because I was jealous of her friend. Another time, she and I were at a concert and I tripped over the legs of a chair. Girlfriend confronted me afterwards, saying that she was tired of my “stumbling and bumbling around” and that I must be doing it to get attention. I don’t know what would make somebody try to get attention by tripping over things. I was already embarrassed by it, and having people pay attention to me simply made me more self-conscious, which made me even more likely to be clumsy.

Fortunately, dyspraxia hasn’t impacted my work life too much. Okay, my first job was working at McDonald’s, and that’s not the best place to be when you have dyspraxia. At least I knew enough about my abilities that I asked to not be assigned to work in the kitchen. I already suffered frequent burns from hot coffee and french fry racks. I didn’t trust myself around grills and deep fat fryers. I did, however, drop my fair share of burgers, and I could never get the hang of the lids for the coffee cups, especially at seven in the morning.

I have never been formally diagnosed with dyspraxia, but I am 99 percent sure that it is the cause of my difficulties. I do not have ADHD, and I don’t think I can blame autism for all of my problems. While I have the handwriting problems associated with dysgraphia, I don’t have the language difficulties. When I got my neuropsych evaluation that led to my autism diagnosis, some of the things that were included in the assessment were the fact that I was late to the appointment, that my clothes were wrinkled and food-stained and that I tripped on my way in.

As an adult, there are things I have learned to help myself cope with some of the difficulties that come along with my executive function problems. For example, when I have to be somewhere at a particular time, I find out what bus will get me there on time, and then I plan to catch the bus before that one, if not the one before that one. This is so that I won’t be late if I miss the bus. I also try to give myself extra time to catch a bus. For example, if leaving home at 9 a.m. will get me to the bus stop on time, I convince myself that I must leave at 8:45. (I usually wind up leaving between 8:50 and exactly 9.)

I always ask for written instructions, because I know I will mess up verbal instructions due not only to dyspraxia but also to my auditory processing difficulties. Written lists help in a lot of ways, such as listing every step I need to take to get somewhere, even if it seems obvious to other people. I type everything and avoid handwriting whenever possible. I own my home, so I no longer worry that I’ll get evicted for a messy apartment, but if I do need to clean I ask somebody to do it with me, because I know I won’t be able to do it by myself. I will end up either with one small part of the place spotless and the rest messy, or all of the house just a little bit cleaner than before.

There’s not a lot I can do about my absent-mindedness, as far as I know. Having a cell phone with a calendar on it and including every little detail on that calendar at least helps with remembering appointments and birthdays, though it doesn’t help me remember to take my lunch to work with me. My absent-mindedness even influenced my choice of insulin pump for my diabetes: I chose one that I don’t have to remove when I take a shower, because I know that I would forget to put it back on again.

Dyspraxia/developmental coordination disorder seems to be a little-known and not-well-understood “cousin” to autism. Motor skills difficulties are often included as part of an autism assessment, but they may not be caused by autism. They may be caused by dyspraxia. Absent-mindedness and poor executive function may not be caused by ADHD but by dyspraxia (or by both.) If you or your child is the one who trips over things, drops things, forgets things and/or messes things up, and if an evaluation is within your means, then it might be worth getting checked out. (One note, though; I found that having my flat feet fixed with orthotics has helped to reduce the tripping-over-things part somewhat.)

If your friend or your co-worker drops things, trips over things and bumps into things, their clumsiness may have an actual neurological cause. Please be patient with those of us whose bodies just don’t quite follow the brain’s instructions properly.

When do We Get to Speak for Ourselves?

November 1 is Autistics Speaking Day, also known as Autistic Communication Day, and my topic for the day is: “When do we get to speak for ourselves?” [Please note that I am using the word “speak” in this context to mean the same as “communicate.” I do not want to exclude those who communicate via other means.]

When you read about autism in the media, whom do you most often hear from? Do you read quotes from or see interviews with actual autistic people? Probably not, unless they are Temple Grandin. No, you most often hear from parents of autistic children (or sometimes autistic young adults) or you hear from autism “experts” — psychologists, psychiatrists and researchers. Even Temple Grandin’s mother is interviewed, even though we know that Temple is quite capable of communicating herself through speaking and writing. But the media is fixated on the perspective of parents.

There’s a fantastic blog post called “Person with Autism Manages to do Something.” (Read it here.) It satirizes the usual tone of articles about autism. A “person with autism” (never “an autistic person”) has managed to achieve something that is so surprising to the experts that the newspaper has written about it. They speak to Emily Expert, and they speak to “Joe Autie’s” mom, but never to Joe himself.

I recently saw a movie called “Life, Animated.” It’s a great movie about an autistic young man, but I was reluctant to see it. I was afraid it would portray autism as a tragedy. Happily, it didn’t do that. It was a truly inspiring movie. But at first I couldn’t shake off the negative feelings I had about it that made me not want to see it.

I finally realized why I had such a negative feeling about the movie without even seeing it. I had seen articles about it, and I had seen TV interviews with the filmmaker, and I had seen interviews with the father of the young man the movie was about, but I hadn’t (at the time) seen or heard anything from the subject of the movie himself. (I did later find a clip of Owen being interviewed on “The View,” and doing a great job, though one of the hosts does try to speak for him at one point.)

After reading yet another article that didn’t include Owen, the young man the movie is about, I posted a comment asking why there was no input from Owen in the article. The responses from other commenters said that autistic people can’t talk, and therefore can’t be interviewed. That we can’t speak or communicate (often described as our being locked in a prison) is a huge misconception about autistic people, and I’m afraid it’s one that is often used to deny us a chance to speak (or type or sign) for ourselves. People make judgments about us without even meeting us.

A couple of years ago, I contacted a local newspaper to suggest that they do a story about autism and talk to the members of the autism group that I organize. I got a response from a news reporter asking when he could arrange to talk to my parents and the parents or caregivers of other people in the group. I replied to him that my parents passed away in 2009 and 2013 and that I do not have a caregiver. I wish I had added, “and if I did live with my parents or a caregiver, I would still wish to speak for myself.”

The Problem with Being Labelled “High-Functioning.”

While I identify as autistic, my original diagnosis was “Asperger Syndrome.” Asperger Syndrome is usually identified as a “mild” or “high-functioning” form of autism. Many non-autistic people don’t understand why this is problematic. “Surely,” they say, “you would rather be high-functioning than low-functioning.”

In previous posts, I have described the problems with functioning labels: they divide the autism community, they try to fit people into neat little boxes that we really don’t fit into, and they make it sound as if those of us who get labelled as “high” functioning are somehow superior to those who are labelled “low” functioning. None of us is truly “high” or “low” functioning. We all have different abilities and different challenges.

There is also the perspective that those who are labelled as high-functioning don’t have problems. We’re sometimes seen as just being quirky or a little odd. It’s even become a popular trope of TV to have a character who appears (but is never identified) to have Asperger’s: they’re socially awkward (but in a “cute” way), they take things literally that are not meant to be taken literally, and they spout their knowledge of a particular pet subject, but in a way that advances the plot. They don’t get told to shut up or get ostracized from their peers.

In “real” life, as opposed to TV, even those who are labelled as so-called high-functioning autistics do have challenges. Our social difficulties aren’t seen as cute or quirky. Our specialized knowledge of a particular subject is seldom welcome at parties or used to catch a serial killer. We don’t have cool jobs as scientists or medical examiners or criminal profilers. Most of us are unemployed or underemployed. Many of us receive government financial assistance.

In general, autistic people are expected to do our best to “pass”. We are supposed to act as if we are not autistic. Not all of us can do this. Those who can do this find it can often backfire, because when we pass successfully, people forget that we are autistic (or they never knew it in the first place). Then, when an autistic difficulty suddenly manifests itself — saying something offensive unintentionally, misunderstanding what somebody said, assuming another person is being literal when they’re not — people don’t understand why we did it and think we did it on purpose or perhaps were trying to be funny. If we try to explain autism, we are accused of such things as “looking for sympathy” “exaggerating (our) problems” “making excuses for being rude” or simply “faking it.” What they don’t understand is that what we are faking is being non-autistic, not faking being autistic.

There have been times, probably too many to count, when I have tried to do what I think is the right thing in a situation, such as offer sympathy or encouragement to a person going through a hard time, only to find that I have still messed it up. If I try to show that I understand what a person is going through by saying that I went through the same thing myself, I am accused of being self-centred or making it all about me. When I think that I am offering support or encouragement by saying things I have heard others say, like “hang in there” or “take care of yourself”, I find that the person thinks I am trying to tell them what to do. When that happens, it’s no use saying that it’s because of the autism, because I will just be seen as making excuses.

To those who are autistic, I ask you to not label yourself as “high” or “low” functioning. Just say that you’re autistic. Don’t deny that you have challenges. For those who are not autistic, please don’t assume that an autistic person who can talk or can use a computer is automatically “high-functioning.” Please don’t use functioning labels. If somebody tells you that they made a social mistake due to autism, please don’t accuse them of using it as an excuse.

What’s So Funny About Autism?

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!”

Silly Rabbit, Autism is for Kids!

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.

There Are No Perks to Being Bullied

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.

Followup to “Autistic Adults travel, too”

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.

How Can You Have an Autism Working Group with No Autistic People in It?

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.

Autistic Adults Travel, Too!

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.