Life on the Spectrum

Posts tagged ‘autism’

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!”

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Autistic person speaking

November 1 is Autistic Speaking Day, also known as Autistic Communication Day (because not all autistic people speak the way we normally understand the concept of speaking.) This is a day for autistic people to speak, literally or figuratively, for ourselves instead of sitting back and letting organizations like Autism Speaks try to speak for us and about us. Autism Speaks has no autistic people on its board of directors, so they’re not doing a very good job of speaking for autistic people.

When I was wondering what to write about today, I happened upon a series of posts that a blogger called Neurodivergent K wrote for Autistic Speaking Day. They’re about a situation she encountered at Autreat, the autism convention that happens in the United States every year. If you’re interested in what she has to say, you can go to http://timetolisten.blogspot.ca/ and read her series of “Autistics Speaking Day: truth to power” posts.

I had an experience at an autism conference that was similar to hers, though less serious. K’s experience had to do with auditory sensitivity, but hers was more serious as she has epilepsy that can be triggered by sensory overload, and she had a number of people try to tell her that she was wrong to complain about the situation that almost caused her to have a seizure.

I went to an autism convention in October. It was planned by an autistic person for autistic people. However, not all the people involved were autistic. One person who presented at the conference works with autistic people, so I assumed he was familiar with the types of sensory sensitivity autistic people have. To be generous to him, I will assume that he is unused to making his presentations to autistic people and instead makes them to non-autistic, non-sensory-sensitive people.

There was one day during the convention when this particular person was scheduled to give a presentation from two o’clock to three o’clock. I had seen snippets of his presentation during the convention already, and I knew that they contained very loud, pounding rock music. In fact, his presentation seemed to be one long rock music video. So I decided to take an extra-long lunch that day and sit on the waterfront where it was peaceful (it was a grey, cloudy day so not many people were around the waterfront) and I was in familiar surroundings of ocean and mountains. I’d already had problems that day as a few people had brought children to the morning presentations, and there wasn’t much for the children to do so they had become bored and disruptive (note that I am not blaming the parents, who had been assured that children were welcome; children were welcome, but there wasn’t anything for them to do), which had disturbed me and made it difficult for me to enjoy the morning session. That was why I had decided to head down to the waterfront in the first place. Ocean and mountains are my touchstones.

At three o’clock I arrived back at the place where the presentations were being held, but I could tell even before I went inside that the music was still going. So I walked back up to my motel, ate a granola bar and checked my e-mail before returning to the centre. Unfortunately, the presentation was still happening, even though it had been scheduled to end at three. When I objected to the music and pointed out that the presentation was supposed to be over, the director of the convention said that they had started late and suggested I go for a walk if the music bothered me.

Wait a minute. I’m autistic. The person making the presentation with the loud music is not. Shouldn’t the needs of an autistic person at an autism conference be paramount?

No one could tell me when the presentation was supposed to end, so I was reluctant to go for a walk in case I missed the delegate meeting that was scheduled to come after. I sat down, figuring it had to be over soon since it was already half an hour overtime. But it didn’t end. It didn’t end for another hour. I tried my best to tolerate it. I put my hands over my ears, but there’s only so long that anyone can do that, and soon I was sitting in my chair, rocking back and forth with my hands over my ears close to bursting into tears.

The odd thing is that no one else complained and no one seemed to care that I was in distress. Surely other autistic people have noise sensitivities, I thought. But no, everyone just sat and watched the video presentation. Before long the presenter started to speak, but the music was still going and made it impossible to hear him. Even worse, he was speaking through an interpreter who wasn’t completely familiar with the language he was interpreting.

Eventually someone suggested that the music be turned down, and the music did get turned down, but not by much. It went from “wall-shaking volume” to “dull roar.” I used earplugs, but unfortunately, as someone with extreme hearing sensitivity, I’ve used earplugs more than half my life, and I’m almost completely immune to their effects. All they do is make it difficult to hold conversations. They don’t block out anything that’s not speech.

The noisy music presentation finally ended 90 minutes after it had originally been scheduled to end. We had the delegate meeting, but unfortunately the children were still there and still disruptive. I picked up my bag and announced that I was completely fed up and was leaving. Fortunately someone agreed to take the children into another room to entertain them, otherwise I’d have completely missed the delegate meeting that I wanted to attend.

Unfortunately, I have not encountered a lot of sympathy or support for my experience. No one else who attended seems to be bothered by noise the way that I am bothered by noise. I still can’t understand how anyone who is holding an autism conference, whether it’s the one I attended or the one Neurodivergent K attended, can not comprehend that some autistic people have noise sensitivity and that we have a right to have our sensory sensitivities accommodated at autism conferences.

I may not attend this conference next year. I was hoping to go to the one that Neurodivergent K attended, but because of their lack of support for auditory sensitivity, I may not go to that one, either. I am very unhappy that there are autism conferences that do not accommodate hearing sensitivity and I am beginning to think I may never be able to attend any autism conferences at all.

Purple Aspie Celebrates 1000 Ausome Things #Autism Positivity 2013

What is positive about autism? What is awesome (ausome) about autism?

I thought about this a lot last night when I was trying to work out what to write for the autism positivity flash blog. At first I thought I would write about myself, but I couldn’t think of anything about me that is awesome. I’ve had people tell me that I’m an awesome writer, editor, cat mom, and autism/Asperger advocate. But I could be any of those things without being autistic.

I could write about the positive things that I find come along with being autistic. I could write about how my being very auditory-oriented helps me to write dialogue when I write fiction. I could write about how being extremely detail-oriented makes me a good editor. I could write about how my auditory hypersensitivity makes me good at transcription.

I have decided, however, to write about what I find to be one of the most ausome things about autism, and that is the autism community and the ausome people in that community.

In the eight years since I was diagnosed autistic — and the eight years before that, when I was looking for a diagnosis — I have met many ausome people. In that time I’ve also worked to bring people together, to help autistic people meet and support and learn from each other through my Asperger Meetup Group and my participation in the ANCA Naturally Autistic organization. After I attended the Naturally Autistic Awards, Convention and Festival last year I made dozens of new friends from all over the world.

I belong to many online autism communities where people post questions and ask for help and information, and there are always autistic people and parents of autistic children who are willing to give help and advice to those who ask for it.

There are many people in the larger autistic community who work hard to change people’s attitudes about autism from negativity to positivity. There are self-advocacy organizations and parent organizations. There are probably more than a thousand ausome autistic people who are working to make the world a more positive place for us, and I am just one of them. I guess that makes me ausome too.

What’s in a label?

Over the years that I’ve been dealing with Asperger’s, I have met some people who say that they do not want to have a “label”, or they do not want their child to have a “label.” They believe that labels are bad things and should be avoided.

Of course, there are some situations in which a person has to have a diagnosis and has to reveal that they have the label of Asperger’s/autism. These are situations in which a person might need accommodations at work or school, or they need to access certain services. But what about social situations? What about telling your co-workers? What if you have made a new friend and you’re hesitant about telling them?

Well, what is the purpose of a label? A label tells you what’s inside the package. Say you go to a store because you want to buy a TV. But when you get to the store, all you see are boxes — boxes with no labels. They’re all the same size and shape. How do you know which box contains TVs, which contain radios, which contain other furniture? You don’t, unless the boxes are labelled.

It’s the same with Asperger’s. While some of us are seen as “quirky” or “eccentric,” most people can’t tell just from outward appearance that someone has Asperger’s. Unlike the more severe forms of autism, it’s usually not obvious. So you don’t know what’s in the box without the label.

I choose to wear the Asperger label. I may not tell a person the moment I meet them that I have Asperger’s, but if I know I am going to be spending very much time with this person, then I probably will tell them — I’ll use the label — because I want them to know what’s inside. I want them to know that if I’m not making eye contact, it’s not because I’m being dishonest or evasive. If I accidentally say something that could be considered rude or insensitive, I’m not doing it intentionally. If I tell them I wish to avoid a place that is extremely busy and noisy, I want them to know why.

“But Purple Aspie,” some people have said to me, “if I tell people that I am autistic/have Asperger’s, then they will have preconceived notions of what autistic is, and they will treat me differently. They will treat me as disabled. They will not see me; they will see my label.”

This is where a person has to decide for themselves whether they wish to reveal their label or not, and when to reveal it. My suggestion is that unless you need specific accommodations for your autism/Asperger’s in a particular situation, you wait a little while to reveal it. Let people get to know you first. Then, when you tell them, they will already know you, and they will (I hope) know how to treat you. But you have to be willing to speak up for yourself. I know it’s hard; one Aspie told me that he is much better at advocating for other people than he is at doing it for himself. But you are the one who knows what you need; you are the one who knows how you wish to be treated. Sometimes you may just have to say, “I’m the same person I was before you read what was on the label.”

In the end, it’s up to each individual person whether or not he or she accepts the label or tells other people about it. I think labels have purpose, but we have to be careful how we use them. I’m reminded of the time my boyfriend got a brand-new label maker and went around sticking labels on everything in the house, including the cats. We should not be treating people that way, going around sticking labels on everyone willy-nilly. We should use labels where they are appropriate and useful, to help us understand what’s inside.

Yes, it’s the “autism cure” subject again

I sometimes say that I am in favour of treatment and therapy for the symptoms of autism, but I am not in favour of a cure. I know that there are many people who are in favour of a cure for autism, and this is my attempt to meet them halfway. You see, I am not a parent. I do not know what it like to have a child, either autistic or non-autistic, so I do not have a personal understanding of how the parent of an autistic child feels about curing their child. So I try to suggest that maybe if we could treat the symptoms, that would make the child in question be happier and healthier and then maybe we wouldn’t need a cure. I also think that therapy would be beneficial for autistic adults too, to help us find ways to have fewer meltdowns, ways to help us make more friends, ways to help us develop better motor skills.

Sometimes people compare us to the Deaf community. In the Deaf community there are people who have cochlear implants and people who do not. They have a choice, and they have made it. However, there are parents who get cochlear implants for their children while those children are very small and do not have a choice. To most non-Deaf people, it’s a no-brainer. Who would choose to remain deaf if they had a choice? Who would want their child to be deaf? I can’t answer those questions, as I am not Deaf, but there are some Deaf adults who choose to not have cochlear implants and who, if they had children, might not want their children to have them until the children are old enough to choose for themselves. They want to expose their children to Deaf culture, to the Deaf community. (Just an FYI: I capitalize “Deaf” when talking about Deaf culture and the people who follow it; I use lowercase “deaf” when talking about merely the inability to hear.)

I know a Deaf woman who has chosen for the time being to not get a cochlear implant. Right now she is entitled to an ASL interpreter or a captioner (a person who sits with her and types on a laptop computer so that she knows what other people are saying) in certain situations, such as medical appointments or when going to school, under human rights laws. However, she expressed a concern that with the increasing number of people getting cochlear implants, one day someone will simply say to her, “You don’t need an interpreter. Go get a cochlear implant if you want to know what people are saying,” and that her right to have an interpreter/captioner will end because she wouldn’t need one if she had the implant.

This comparison to the Deaf community is behind some of my “cure” fears. I fear that if one day autism is cured, children will not have the right to choose to not be cured, because governments will simply stop paying for autism therapy because “there’s a cure, so your child doesn’t need therapy,” or because their parents, believing sincerely that a cure is what is best for their child (and I can’t completely fault them for that) will have them cured without asking the child what he or she wants. Again, I can’t totally blame them. If a child is autistic and non-verbal, how can you ask them, especially if they are too young to use an assistive device?

I’ve been told that deaf people can turn off cochlear implants. You can’t turn off a cure for autism.

I do not know how a cure for autism would affect me if there were one. As I’ve said before, I don’t know where “I” end and “autism” begins, or if there even is such a place. I don’t know what I would be like without autism, and I don’t know if I really want to know. Maybe I’d be better at eye contact, or maybe not, since I’ve not been making eye contact for 40-some-odd years and am simply not used to making it. Maybe my hearing would be less sensitive. Maybe wool sweaters wouldn’t bother me as much. Maybe I’d enjoy parties more, or maybe not. I’m sure I’d still be an introvert, but maybe I wouldn’t worry as much that my social skills wouldn’t be up to the task of making small talk at a party.

When it comes to social skills, even if my autism disappeared overnight, that wouldn’t mean that my social skills would improve overnight. I’d still have to learn them.

Ideally, though, I’d prefer it if there were effective (and accessible and affordable) therapies and treatments that could help treat the “bad” stuff — meltdowns, sensory issues, eye contact difficulties, communication problems, inability to speak, executive function disorders, motor skills problems and yes, social skills problems — without taking away autism itself, because as I said, I’m used to being autistic and it makes me nervous to think about not being that way.

When it comes to children, it’s harder. On the one hand, I don’t want them to suffer from sensory overload or run into traffic because they have no sense of danger or be unable to communicate until they’re old enough to type on a computer or be ostracized at school due to their autism. On the other hand, I want them to grow up to be gloriously, brilliantly autistic — not brilliant in spite of their autism, but along with their autism or even because of it — without having someone mess with their brains in an irrevocable manner.

I’m not saying that all geniuses are autistic or that all autistics are geniuses (I’m certainly not), and we certainly can’t just go dig up Einstein or Mozart to prove they were on the spectrum. I just don’t want to deny someone the chance to grow up to be a Mozart or an Einstein because their autism was cured at a young age and that changed their brain in such a way that they they no longer have those “genius” characteristics.

Stop hating

A few days ago I was asked whether I loved autism or hated autism. I said that I don’t hate autism, and I don’t love autism. The person who asked me this question then asked what I might say to someone who hated autism, especially their child’s autism or their own autism.

My reply was that autism doesn’t care if you hate it. Autism isn’t a person. Autism doesn’t have feelings, and it’s not going to go away just because you hate it.

Hating autism isn’t productive. I can certainly understand being frustrated by autism, being annoyed by autism, being tired of autism. I can understand how frustrating it can be when autism prevents you from doing something or makes it difficult to do something that non-autistic people find easy to do.

However, I believe that hatred is poison. Hatred is not productive. Hatred doesn’t hurt autism, but it may hurt the person doing the hating, and even worse, it may hurt an autistic child. You see, a child isn’t going to understand that it’s the autism being hated. The child will think that he or she is the one being hated.

I have always said that autism is an integral part of a person, that there is no separating the person from the autism or the autism from the person. If you hate autism, then you are hating something that is a part of a person’s identity. If I hate autism, then I am hating a part of myself, and I don’t want to hate a part of myself. If I had an autistic child and hated the child’s autism, then I would be hating part of who my child is.

I won’t tell people to not get frustrated or angry or just plain fed up with the effects of autism on themselves or their children. I will ask them to stop hating. Stop using the energy for hatred and turn it to something more productive, like working with an autism therapist on the things that make you frustrated, angry and fed up.

I also think it’s okay to vent. Venting is a way of letting off some of that negative energy, especially if you vent to people who understand. That’s one way in which the internet is helpful to autistic people and to parents of autistic kids. We can find others in similar situations and vent to them, and they will understand.

So please, don’t hate autism. I’m autistic, and I don’t want you to hate me. Don’t make your children think you hate them, either.

Why listen to autistic adults?

In hanging around the autism blogosphere I’ve noticed a large disconnect between autistic adults and the parents of autistic children. There seems to be very little discussion among those of us who are adults, who have grown up with autism, and the parents of the children who are currently growing up with autism and will one day become autistic adults.

I don’t know if this is because (1) the parents hope their children will be cured of autism before they become autistic adults; (2) because we adults talk about the difficulties and hardships we faced, and this distresses the parents who don’t want their children to face the same hardships; or (3) because many of us adults have accepted our autism and don’t want to be cured, while the parents are still hoping for a cure for their children.

I don’t want to go into the whole “cure” debate here, but I do want to address the second point here: that we autistic adults talk about the hardships we’ve faced, and this distresses the parents, who don’t want their children to face the same hardships.

This, to me, is the biggest reason why parents should listen to autistic adults: because we’ve been there. We’ve been there, done that, and bought the t-shirt. Most of all, we’ve survived and come out, hopefully stronger and wiser. We can tell parents, and older kids, what we’ve learned. We can say, “This is what worked for me in this situation. Maybe it will work for you too.” If there isn’t a solution, at least we can say, “I survived, and so will you.”