Life on the Spectrum

Archive for February, 2013

Myths About Autism Addressed by an Autistic Person

I just read an article called “Top Ten Myths About Autism From Moms Who Know.” When I saw that, I wondered: why from moms? Why not have an actual autistic person address myths? Someone commented that they’d like to see an autistic adult write a blog post about the myths, so here I am.

Myth #1: Moms of kids on the spectrum are “refrigerator moms.” Wow, are people still reading Bettleheim? There are all kinds of parents, just like there are all kinds of autistic people (kids and adults). Some mothers are affectionate. Some aren’t. This applies whether the children are autistic or not. A mother withholding affection from her child might cause the child to have emotional problems, but it doesn’t lead to neurological differences.

Myth #2 Autistic children people have no empathy. This is a very dangerous myth that has led to mass murderers being labelled as autistic. The problem isn’t a lack of empathy. The problem is that we don’t express empathy the same way non-autistic people do. I personally refrain from saying, “I know how you feel,” because I don’t always know how another person feels unless they tell me. One day a friend called me to inform me that one of her family members had died. I said, “Oh, I’m sorry,” and my friend laughed and said, “I’m not sorry [that her family member was dead.]” This is why these days I wait to hear what the other person is saying about how they feel before I try to express sympathy or empathy.

Myth #3 Autistic kids people need to be taught (or forced) to make eye contact. I literally cannot talk to someone and make eye contact with them at the same time. I have an automatic response of averting my gaze when I talk to someone. I don’t do it consciously. I have to consciously force myself to at least look in the person’s direction so that it appears I’m making eye contact.

When it comes to kids, I’d tell them why people expect them to make eye contact and explain that some people might think you’re dishonest if you don’t. Then I’d work with them to practise ways to at least appear that you’re making eye contact with other people.

I was once forced to participate in an eye-contact exercise. It was a “hot or cold” game in which an object was hidden in the room and I had to use eye contact to tell the person looking for it whether he was “hot” or “cold.” By the time I was done I was exhausted, shaking and sweating, my anxiety levels were through the roof, and I had a headache. Some people on the spectrum can make eye contact, but many of us can’t. Forcing us to do so doesn’t help.

Myth #4 Kids People on the autism spectrum are just like Rain Man.

Did you know that the person the movie Rainman was based on was not, in fact, autistic? His name was Kim Peek. Go look him up in Wikipedia if you’re so inclined.

The character of Raymond Babbitt had some autistic traits, such as being very attached to his routines and having meltdowns when those routines were disrupted. He insisted on watching the same TV show at the same time every day. When I was a kid, I “had” to watch the same shows every day, and I learned to tell time by learning where the hands were on the clock when my shows were one. If I didn’t get to watch my show, I’d have a meltdown.

However, not all autistics are savants, and not all savants are autistic. Most autistic people do not have savant abilities. Some do. Daniel Tammett, author of the book Born on a Blue Day, is one. But savants are not common. Rainman has made people think that we’re all savants, and I’ve had people ask me, “What’s your special ability?” when they find out I’m autistic.

Myth #5 Non-speaking autistics always have an intellectual disability. In other words, they’re retarded. There are many non-verbal autistics who can communicate through writing or typing. Some have written books. Many are considered to have intellectual disabilities when they are young, but once they learn to read and write, they are able to dispel this notion. I am acquainted with one non-verbal autistic who is a university student.

Myth #6 Autistic children people can’t stand to be touched. Wow, tell that to my friends. Seriously, I’m a hugger. But you know what? I like warning. I like to be prepared for someone to touch me. If someone touches me without warning, even if it’s my boyfriend, I cringe. I once spent a day working with someone who touched me every time she spoke to me, just a casual hand on my arm or shoulder, and at the end of the day I felt like I had bruises up and down my arms.

Touch has a big sensory impact. For some people on the spectrum, it’s too overwhelming. Others, myself included, like a bit of warning before being touched or hugged. That’s probably where this myth comes from. But this isn’t the case for everyone, and there are many autistic people, kids and adults, who enjoy hugging and other forms of touch. But I’d suggest that if you meet an autistic person, you ask before touching or hugging them.

Myth #7 There is an autism epidemic. No, there isn’t. Autism is not a disease, and it’s not contagious. Therefore, there cannot be an epidemic. Yes, there are more kids (and even adults) being diagnosed than before. It’s not all due to the awareness of Asperger’s or awareness that autism is a spectrum. Many kids who are diagnosed autistic today would have been diagnosed with something else 20, 30 or 40 years ago — ADHD or “hyperactivity”; mental retardation; mental illness; or my favourite, “childhood psychopathy.” That is what autistic children used to be diagnosed with.

Myth #8 Autistic kids people have no sense of humour. I like jokes, just maybe not as much as the next person. As I will often say, “I like jokes when they’re funny,” or “I have a sense of humour, but that is not funny.” This usually applies to a cruel “joke” that is aimed at a racial or sexual minority, or women, or disabled people.

My Aspie friends and I laugh a lot when we’re together. At a gathering we had a few nights ago, we were trading puns about cows. Other times we’ve laughed at the incongruity of a bunch of supposed anti-social people having a social gathering. There is a comedy troupe made up of people with Asperger’s, called Asperger’s Are Us.

I will admit that I dislike sitcoms. In my opinion, sitcoms are about stupid people who do stupid things. But I love Monty Python’s Flying Circus.

9. Autistic children people don’t feel love. If this were true, I wouldn’t love my boyfriend. I wouldn’t love my family. I wouldn’t love my cats. Autistic people would never get married, never have partners. Jerry and Mary Newport are two autistic people who fell in love and got married.

Temple Grandin says that she has no interest in or concept of romantic love, but she loves her family.

Myth #10 Autistic children people are mentally retarded. See the myth above about non-verbal autistic people. Just as autism is a spectrum, intelligence is a spectrum. There are people on the autism spectrum who are geniuses. There are people on the autism spectrum who have intellectual disabilities. Everyone else, probably most people, falls somewhere in-between.

It may not be possible to judge the intelligence of everyone on the autism spectrum. We may not do well on conventional IQ tests. When I was tested, the psychologist informed me that he wasn’t going to tell me my IQ, because the number did not reflect my true intellectual abilities. (I suspect that meant I scored relatively low.) The reason for this is that my “verbal” intelligence far outstripped my “non-verbal” intelligence. My verbal intelligence score was in the top 2 percent of the population, while my non-verbal intelligence score was in the bottom 40 percent. This is why I call myself a word nerd.

Many autistic people, especially those with language difficulties, score low on intelligence tests that are highly verbal. Many intelligence tests have cultural biases. One teacher gave an autistic person a test that asked, “What would you ask a friend who says he’s getting married?” The autistic person said he would ask, “What kind of cake are you having?” The teacher said that was the wrong answer. How can there be a “right” answer to that question? There are tests for non-verbal intelligence that are seldom used.

There are many stereotypes when it comes to autism. When a newspaper reporter called me up to ask if he could do a story about the group that I run for autistic and Aspie people, he asked if he could meet our “caregivers.” He asked if we had “workers” that we saw every day. I told him that we were too busy going to work or school to have “workers” that we saw every day.

The best way to bust myths about autistic people is to talk to actual autistic people. If you don’t know any, then read things written by autistic people — not about us, but by us. There are many autism blogs out there, but make sure you read blogs that are by autistic people rather than by parents. (You can read blogs by parents, too, but they don’t give an autistic person’s point of view the way blogs written by autistic people do.)

You know what? I’d love it if the Mythbusters did a special on busting autism myths. Maybe we should write to Adam and Jamie and ask them.

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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.