Dispelling some myths about autism

by Kalen

This presentation was given by Kalen, a woman with an autism spectrum disorder, at the 2000 AGM of the NAS Cheshire Branch. Kalen is available to speak at other group meetings. If you would like to get in touch with her, or comment on this presentation, please contact her by email at autism@paradox.freeserve.co.uk.

Introduction

Hi. I go by Kalen, which is not my real name, but it's the name I have used online for the past three years and I am working on a book, so I wanted the association to be easy.

I have a daughter who is what I call "severely normal" very interactive, friendly, expressive, social. It's difficult, but I've learned to accept her as she is despite her social dependency. :) My daughter and I moved to the UK from Canada in March of this year to be with my partner who has Asperger Syndrome. We are probably more understanding of each other because we're both autistic, but that doesn't mean he's not annoying.

I was diagnosed with Autistic Disorder in 1998 at the age of 23. I was previously identified as having specific learning disabilities, which would likely fit the British definition of dyspraxia, when I was 12. I have reason to believe I was diagnosed autistic when I was very young, but I have been unable to confirm this.

I have been asked to say a bit about myself and also to try to dispel some myths about autism.

Myth #1: Autism can be caused by bad parenting

I'm sure everyone here knows better, but it bears repeating: parents do not cause autism. It is neurological, not psychological. If bad parenting caused autism, there would be a lot more autistics.  

Myth #2: High-functioning and low-functioning autism are completely different things

I have been told that as a high functioning autistic, able to express myself, I know nothing about what it's like to be really autistic. I started out quite severe and non-verbal, but "moved along the spectrum". A very recent study shows that there is no difference between Asperger Syndrome and autism other than IQ. The core deficits are the same; it's only the presentation that is different.  

Myth #3: All autistics are the same

Sometimes people know about one or more autistic people and believe that everything they say applies to all of us. Aside from the fact that we share a few traits, and some experiences as a direct result of those traits, we are as individual as anyone else.  From the assumption that we are all the same come a number of other myths:  

a) All autistics think in pictures. (Thanks to Temple Grandin, author of 'Thinking in pictures and other reports from my life with autism'.) While visual thinking may be more common in autistics than in the general population, it is certainly neither universal nor exclusive. I've also found that it is very common among dyslexics and others. I, for one, don't think in pictures.  

b) All sensory issues are hypersensitivities to touch or sound. Sensory issues can also be hyposensitivities, where nothing gets in unless it is very loud or painful; synaesthesia, where one sense is perceived as another; or sometimes extreme fluctuations. They can affect any sense including proprioceptive (sense of one's body in space), and vestibular (movement). I am mostly hyposensitive with a few specific hypersensitivities.  

c) All autistics have "special skills" or savant abilities. Savant skills appear in about 10% of autistic people. This is thousands of times higher than the general population, but still the exception rather than the rule. I had some savant abilities when I was little, but they faded as I learned to communicate. Savant skills are not "useless" as they are sometimes made out to be. I know at least two autistics who have used their savant abilities in employment situations.  

Myth #4: Autistics have very limited abilities and potential

Specifically:  

a) Autistics can't talk. Well that's news to me. :)  In part because of the myth that autistics can't talk, my autism was largely ignored from the time I learned to speak, at about age 6, onward. I know some definitely autistic people who learned to speak very early.  

b) Autistic people have severe learning difficulties. Autistic people appear to have a full range of intelligence. My own IQ has varied over 100 points. When I was young, my parents were told that I was retarded and any abilities I did show were "meaningless splinter skills". Later, all my problems were written off as part of being gifted. IQ testing is not a useful measure for autistic people, if anyone.  On a related note, autistic people do tend to have more than the normal difference between our skills and deficits. Ability or inability in one area should not be considered indicative of overall ability or applied to any other area.  

c) Autistics can't form relationships. My parents were told I would never love anyone. That would come as news to my partner and my daughter. Even very severe autistics can form bonds, show affection, and have concern for the feelings of others.  

Myth #5: There is a normal person trapped inside an "autistic shell"

Then, the theory goes, a "cure" would release the "real person" who is trapped inside the autism, trying to get out. Autism is pervasive. It affects how I think, feel, perceive, process, comprehend, react, and interact. It's not possible to change all that and be left with me. To wish away the autism, is to wish the autistic person were someone else.  

Myth #6: Autism, especially low-functioning autism, is entirely negative

I have quite clear memories of how I was as a non-verbal child, but it is impossible to express with words. I can say for certain that I didn't experience it as negative. It wasn't overwhelmingly frightening, dark, or lonely to me. Sometimes it was frightening or confusing, but overall my experiences just "were" - unjudged and unanalysed.  

Some aspects of autism may be good or bad depending only on how they are perceived. For example, hyperfocussing is a problem if you're hyperfocusing on your feet and miss the traffic light change. On the other hand, hyperfocusing is a great skill for working on intensive projects. This trait is particularly well suited to freelancers and computer work. 

 I would never argue that autism is all good or merely a difference. I do find that my autism is disabling. However, that doesn't mean that it is all bad or that I want to be cured. I may not be altogether happy with who I am, but that doesn't mean I want to be someone else.   

Myth #7: Obsessions, self-stimulation, rituals etc. should be stopped

These behaviours are necessary to the autistic person and usually harmless. Self-stimulation releases tension and regulates sensory input. I notice a direct correlation between increases in my self-stim behaviours and decreases in my self-injury. I don't think this is coincidental. I don't see any reason to modify stims that merely appear "odd" in someone who will appear obviously odd anyway.

For the higher functioning autistics who may want to blend in, then sometimes modification is desirable. The main factor in deciding what to try to change is whether the behaviours which are causing a problem for the autistic person.  Obsessions are an inherent part of autism, and while they can be annoying to others, are also usually harmless.

In some cases, obsessive interests can lead to successful careers. My partner is now a computer programmer after a life long obsession with computers. Obsessive-Compulsive Disorder commonly occurs with autism, but is a separate issue.  Of course, seriously socially unacceptable (more than just annoying or weird), harmful, or illegal behaviours are exceptions to this.  

Myth #8: Playground teasing is harmless

Some people believe they should allow children to be bullied because it will "toughen them up", they need to learn to act normal, they brought it on themselves (by acting weird), or, simply, "kids will be kids".  Teasing may or may not affect the more oblivious autistics.When I was little I had very little awareness of other people, let alone whether those people were teasing me. As my awareness increased, I also became increasingly aware of teasing and the social ostracism I was victim to. In early adolescence, things were so bad that I was seriously depressed and suicidal. I also started injuring myself, something I hadn't done much of since early childhood.  Teasing and bullying should NOT be ignored, they are NOT harmless, and can have very serious consequences.  

Myth #9: Autistic people need and want the same things normal people do

Many people try to judge the lives of autistic people by their own standards. They determine that if they would not be happy with the autistic person's life then he or she must also be unhappy. Autistics may make unusual choices of social life, leisure, and entertainment. I've heard of people grieving for their autistic relatives' inability to go to dances, parties, or other social functions without considering that not everyone enjoys such things.  

When I was little, I was happier playing with carpet fluff than riding my bike. I prefer to make patterns out of lego than build buildings or vehicles. These activities may seem odd, but they are harmless. Play is play and it should be fun.  

Normal people seem to put a great deal of emphasis on independence, despite the fact that they are much more socially dependent than I am. I have lived independently now for most of the last 7 years. I really don't think total independence is all it's made out to be. The best living situations I've had were when I had more practical support and was more "dependent". When my practical needs were taken care of, I had more energy to devote to the things I wanted to do, rather than just surviving.  

It is important to consider an autistic person's quality of life from their perspective. Imposing normal values on someone who probably does not share those values is not productive.  

Myth #10: Autism is a childhood disorder

That one's easy: Autistics grow up. Autistic children become autistic adults. People who continue to learn and grow and develop as anyone else does, and perhaps a bit more. Autistic adults, especially those too high functioning for group homes or sheltered workshops, are woefully under-serviced.  

Myth #11: People with "mild" autism can, and should, act normal

There is no such thing as "mild autism". No matter how high functioning we are, a great deal of effort is going into coping. Some people have called Asperger Syndrome "nerd disorder" as a way of minimising it. There is a fine line between "normal but odd" and "very high functioning autistic". My personal opinion is that the line is where the traits become disabling.  I have a very good "guest mode" where I can appear quite normal; however, being forced to sustain guest mode for an extended period can, and has, lead to a serious breakdown. My ability to behave near normally at times has led others to believe that I can do it all the time and if I don't then I am lazy, unmotivated, manipulative, and deliberately annoying. No one expects a tightrope walker to do it all the time. I try to remind myself that I am a high functioning autistic not a low functioning normal person as others would have me believe.  

Myth #12: Being high-functioning is better and easier than being low-functioning

When I was little, I had no awareness or desire to communicate, and therefore no frustration about being unable to do so. In fact, I sometimes say that my greatest regret in life is learning to talk. It took away my magic and mystical nonverbal world. It's something I miss greatly and can never have back.  The parents I know who have children at different points on the spectrum almost invariably say that the lower functioning children are happier.  

With communication, it was not the inability to communicate which was difficult, but when my desire to express myself was greater than my ability to do so. This is the same in other areas. My difficulties themselves don't cause me as much problem as the difference between my desire to perform and my ability. For me, it was easier being oblivious and "low functioning" than to be in my current "high functioning" state where I am aware of what I am not. 

N.B. The views in this section are offered as the personal views of the contributor. This account should not be read a generalisation of others' situations and does not necessarily reflect the views of the National Autistic Society.