I have a long history of promoting the “different does not necessarily mean defective” position. This is how I approach characteristics that make me different or abnormal but do not, in and of themselves, compromise my ability to lead a full and meaningful life. Left-handedness is one such characteristic; intersexuality is another; autism is a third. All of these are things that may bring me into some degree of conflict with my physical or social environment, but they don’t bring me into conflict with me.
Other characteristics, such as cataplexy or fibromyalgia, do interfere with my ability to function in ways that are important to me. They prevent me from achieving my own goals. And they don’t give anything back in the personalmeaning department to justify what they take away in lost productivity, pain, and incapacitation. This is my personal criterion for thinking about whether I would want to be
changed or “cured.”
I think one issue that tends to confuse this question is the tendency for people to pick out one characteristic (that might not even be an essential feature of autism in the first place) and proclaim that this one characteristic is autism. For example, autistic authors such as Sean Barron and Donna Williams report many negative experiences that seem to relate more to obsessive-compulsive disorder (OCD) than to autism. (The contents of the obsessions and compulsions are decidedly autistic in nature, but the way they take over people’s lives are more characteristic of OCD.) OCD causes people to be imprisoned by thoughts and behaviors that they find distressing but are unable to control. Who would not want to be free of this situation? It is a fact that autistic people are at elevated risk of also having OCD. But people can be autistic without having OCD; and in autistic people who have OCD as well, if the OCD is successfully treated, the person is still autistic. Autism is not synonymous with OCD.
Similarly, Donna Williams has frequently identified autism in terms of inability to process one’s own emotions. Certainly the experiences she describes seem inherently distressing, and certainly it is understandable that a person having such experiences would want very much to change them. But again, people can be autistic without having emotion-processing difficulties; and in autistic people who do have these difficulties, if the emotional misfirings and overfirings can be brought under control (by special diets, biofeedback and relaxation training, medication, etc.), the person is still autistic. It is helpful to distinguish between the core, essential features of autism–the person’s own, internally consistent but other- than-normal ways of experiencing communication, interaction, and perceptions of the environment–and some common but not essential peripheral features or features of separate conditions occurring along with autism.
In my own experience, sensory sensitivities can be painful and can prevent enjoyment of some aspects of normal social involvement–but I gain so much beauty and meaning from the way my senses work! My hearing is oversensitive and this is bothersome at times, but I wouldn’t change it because I don’t want to lose the colors of voices and the tactility of music. My vision is not just oversensitive but is scrambled and difficult to use. I would be cautiously interested in exploring therapies to enable me to have more functional use of my vision. The reason for caution was illustrated a couple of years ago when I tried wearing Irlen lenses. After an adjustment period, I found that the tinted lenses did indeed make certain utilitarian visual tasks
easier–but they also messed up my hearing. I couldn’t see sounds anymore. I came up with the compromise solution of getting the tinted lenses put in flip-up frames, so I could have them flipped down when I needed efficient vision to do mundane things, and flip them up out of the way when I wanted to focus on something personally meaningful
without being distracted. This still seems to me like it would be the best solution, but unfortunately the flip-up frames are not sturdy enough to withstand being used by a person with my motor planning problems. After the fourth or fifth time that I broke them, I decided it wasn’t worth the hassle anymore. For me, it is more adaptive to find ways to compensate for my poor visual processing than to sacrifice meaning in perception by wearing the lenses all the time.
The role of professionals should be to help people use their natural processes to learn and grow. This might meant helping people develop strategies for dealing with sensory oversensitivities: using earplugs or colored lenses, adapting clothing to accommodate tactile sensitivities, providing opportunities for deep pressure or vestibular stimulation, etc. It might mean teaching self-monitoring and self-management of behavior and emotions. Probably it always means learning and teaching translation skills to enable people with different communication systems to communicate with each other.
There is no inherent conflict between accepting and working with autism on one hand, and promoting increased skill development on the other. It is the role of all teachers, counselors, and therapists to promote growth and learning. For professionals working with autistic people, the important issue is that autistic people should be assisted in growing and developing into more capable autistic people, not pushed to become like non-autistic people.
The question of “fitting in” is often brought up by non-autistic people who think autistic people must suffer as a result of being different, merely because they would be unhappy if they could not fit in. One of the core features of autism could be described as an absence of fitting-in instincts. Asking autistic people to fit in just for the sake of fitting in is imposing an alien and incomprehensible structure on our lives.
I take the view instead that autistic people, like all people, need to be taught to behave in such a way that they do not intrude on other people’s boundaries. If a student is displaying behavior that actively interferes with other people (such as unwelcome touching, taking things that belong to others, making noises when people are trying to
concentrate, flipping lights on and off when other people in the room find it distressing), then it is appropriate to intervene, regardless of whether the student is autistic or not. But if a student is engaging in behavior that is merely weird but doesn’t affect anyone else (such as rocking, flapping, or spending free time sorting and lining up his/her
own belongings instead of playing with other children), and if the behavior is not distressing to the student (as it would be in OCD, in which the person wants to stop the behavior but isn’t able to control it), then this is the student’s own business and not a matter for professionals to interfere with.
Autistic people might benefit from having NT social behavior explicitly explained to us so we can make
informed choices as to whether or not we wish to learn certain behaviors. We do not benefit from being constantly told that our ways of doing things are wrong and that we must learn to do the same things NTs do.
If professionals are to help autistic people to live and grow as autistic people, part of this work needs to be with parents and schools and with the larger community. Just as autistic people need to learn that we can do weird things but we can’t intrude on other people, other people need to learn that it’s OK for autistic people to do harmless weird things. Professionals can educate the community and promote tolerance and understanding. We can help parents and other family members, school personnel, and others who deal directly with autistic people to understand how autistic people might experience and learn things. To me, one of the most exciting things we can do is help autistic people and non-autistic people learn to understand each other, and find ways to work together in an atmosphere of mutual respect.
Copyright (c) 1998 Jim Sinclair