Tuesday, May 28, 2013

Asperger's and the Human Essence

Most individual's whose thought processes have been formed in a Western cultural tradition would agree that there is some essence of 'human-ness' that every human contains.  This essence, often called the human spirit, is something that transcends disabilities, intellect, and race or gender. It is often looked at as something sacred or invaluable in both religious and humanistic schools of thought. If we acknowledge these ideas about the human essence, then an interesting question presents itself:
    In individuals with Asperger's, is the Asperger's part of them an essential part of the human essence, or does it take away from the human essence?

    This question is at the heart of many debates in the Asperger's community. It goes back to a search for exactly what Asperger's and Autism are, and aren't, as well as the discussion of whether it is a disability in the classic sense or not. Sadly, this is not as straightforward of a question as it would seem to be. Many authors and even experts seem to misunderstand autism, and many obvious features of autism are ignored in most research. I believe that much of these problems can be traced to three related issues:
    • Autism research is usually conducted by neuro-typical people with little regard for the opinions of autistics on the experience of autism.
    • The primary researchers doing autism research are psychologists and neuro-scientists whose training has prepared them to see what is not normal as a 'disability.' If the research was conducted in a more anthropological way, then maybe the cultural side of Asperger's would be distinguished from the disabilities.
    • Most of the research focuses on low-functioning autistic children. I believe that this is because to a person schooled and interested in studying disabilities, that this group is far more interesting than the adults with very high functioning Asperger's that are hardly as disabled as they are different.

    All these problems prevent the widespread understanding of what autism both is, and isn't. This leads to much frustration, lost time and talent, and even depression for the individual with Asperger's. Because many autistic people are respectful and try to listen to their elders and experts, many autistic people waste years of their lives trying to follow ill-thought advice. Ultimately, autistic people often realize to late that you cannot shove a square peg into a round whole without ruining the beautiful shape of the original peg. Sadly, for me and many other autistic people, the feeling of being a square peg or a black sheep is all too familiar.

    What Asperger's is and is not

    With that background, let’s be clear about what autism isn’t. It isn’t a mental illness, it isn’t a personality, and it isn’t a talent. It isn’t a lack of emotion, or lack of empathy or some kind of anti-social tendency. Autism isn’t purely just a disorder or just a disability either. Autism is something deeper. While an autistic person is often disabled in some area, say in reading body language, they are often extremely talented in some form of symbolic language or art.

    Personally, I think that while autism might be broadly considered a disability by the mental health community, it is a much, much, deeper part of the person than that. Most high functioning Aspie's that I know have no desire to be "normal" or neurotypical. They do not suffer inside from Asperger's like sufferers of mental illness do. They instead suffer when others do not understand them and discriminate against them. The suffering of Asperger's is in the interaction of the person with Asperger's, and the rest of the population. This is not unlike the suffering of someone from a cultural minority. I think that the person with Asperger's can be dealt with and helped in many of the same ways that any minority group can be helped. By understanding that Asperger's is a part of the person in a sense not unlike culture, we avoid many of the pitfalls that people connected to the Asperger's world often fall into.

    Asperger's is not a culture however; we don't choose to have Asperger's, and we cannot choose to change our identity away from Asperger's to another identity. In fact, the whole idea of Asperger's being like a culture is maybe a worthy allegory but it is not the underlying reality at all. While using culture as a comparison to Asperger's may be helpful, other allegories work just as well, maybe better. Culture is to much an exterior part of the person to be like Asperger's; the reality is it is a deeper part of us, maybe like our sexuality. Even when I do traditionally feminine tasks, I do them in a masculine way because I am a man. Even when a gay man is married to a woman, he still seems gay. In this way sexuality is a deep part of us in a way that is impossible to change. I believe that Asperger's is likewise a deep part of us.

    Another allegory that is fitting here is someone who is a true artist. We all know that for artists and musicians, their music and art is a part of their very person. Anyone that has ever known an artist knows that if you took the music away from a musician, that a part of that musician's very person would cease to be.

    I think that when we speak of sexuality, or the part of a person that is a musician, that these parts of the person are deeper than personality; autism is the same way. I think that for these traits, the best analogy is the type of operating system that a particular computer runs. Just as some computers run Mac, some Windows, and some Linux, it seems that some people's operating systems are male, some artistic, some female, and some autistic. As such, I believe (as do many others) that autism is connected intimately with the person-hood of the individual with autism. While personality differences between people often account for how two people perceiving the same thing might react differently. Autistic people perceive the world in a fundamentally different way than neuro-typical people, corresponding to a much deeper reality than personality. I’ve met introverted and extroverted autistic's, and in general, I think that the autistic person doesn’t have any one prevailing personality once you get to know them. While the expression of these personalities is affected by the underlying ‘Operating System’ of the autistic mind, the personality is unchanged.

    As I said before, autism is connected intimately with the person-hood of the individual with autism. As such, to ‘cure’ my autism would erase me. I don’t want to be cured, and I think that it is misguided to want a cure. To want to ‘cure’ the autistic is to tell them that they as a person are defective in the very conscious being that is them. While I do not think that it is wrong to say that a person has a disability in the physical body they inhabit, it is deeply hurtful to infer that a person is defective in the conscious human essence that is them. Autism is deeply a part of this essence in a deeper way than even personality is. It is only once you understand this that one can really understand and begin to work with autism.

    Imagine someone suggesting that musicians needed curing of their music?


    Asperger's, Autism, and high functioning autism affect the person that is diagnosed with them at a much deeper level than a disease affects a sufferer. Asperger's is a part of the very human that carries it, and just as we would never talk of curing a musician of their music, so similarly, talk of curing the AS person of their Asperger's is less than helpful.

    Understanding that personhood and Asperger's are connected should help the people both with it to accept themselves and also should change the way that loved ones, family, professional caregivers, and others understand autism. This realization has been critical to how I view myself, and has been healing and the greatest blessing to me. 


    1. I think AS versus NT is similar to gender differences: it is part of makes us who we are, but is not the WHOLE of who we are!

    2. Some people think that Autism as a whole is not a disability. One story I've read that think counteracts that, is in Sue Dengate's book "Fed Up" she writes about a young woman with autism and epilepsy who became much more "normal" with a change of diet..... and the effects included a reduction of her previous uncanny ability with numbers..... I think that showed that although her autism wasn't caused by the wrong diet, the effects were exacerbated, and that improvement in her phsyical health meant reduction of her autism, including the "good" aspect!