Monday, September 21, 2009

The Autistic Mind: To Celebrate or Cure? (by Kate Altman)

(Note: the client described in this post gave permission; his name has been changed to protect his identity)

The other day, I was walking with a 14 year-old client, Bruce, who has Asperger’s syndrome (we take walks during sessions to get a little exercise). Mid-conversation, he suddenly stopped, pointed towards a passing car, and exclaimed, “I hate those bumper stickers!” Surprised by his outburst, I looked to where he was pointing and saw that the car featured a “cure autism” bumper sticker to the left of its license plate. I looked at Bruce quizzically, and he continued, “I’m so sick of hearing people talk about ‘curing’ and ‘fixing’ people with autism and Asperger’s. Don’t they know about neurodiversity? There is nothing wrong with us, nothing to be fixed. It makes me so angry!”

When I met Bruce a few years ago, he was a child who knew about his AS diagnosis, but never spoke of it and quickly changed the subject whenever I brought it up. When he learned that his idol, Albert Einstein, is often speculated to have had AS, Bruce’s interest was piqued and a sense of pride began to develop. Now, he boasts about his AS—he is thrilled to share cognitive features with Einstein and Bill Gates. Recently, I have noticed him making casual references to the neurodiversity movement and autism self-advocacy. Before my eyes, Bruce is blossoming into a self-aware young man who is proud of his differences and even pities us “neurotypicals” who don’t possess virtues like an intense ability to concentrate and the “black and white thinking” that helps him make sense of the world. Bruce once described his mind as being segmented into many rooms which are not connected, but in which everything is stored and accessible to him. He said it is because of these thousands of rooms that he never feels bored.

Learning about neurodiversity and viewing his AS as a neurological difference rather than a defect has helped Bruce to develop confidence, independence and the sense that he is special, even during the height of puberty and the mania that is middle school. I support neurodiversity, especially when I look at what the movement has done for Bruce. However, I can also appreciate that supporting a cure for autism is much more important to many parents than celebrating neurodiversity. After all, Bruce can speak for himself; he is also a straight-A student in his honors classes, performs in school plays and has friendships. Parents of kids with autism who don’t have language, avoid being touched, and will never live independently, face a much different and more desperate-feeling situation.

Some parents of children with autism oppose the neurodiversity movement, just as Bruce and other neurodiversity advocates oppose the “cure autism” movement. I would argue that there is room for both. We can support researchers as they look for better therapies to help individuals with autism live comfortably in this neurotypical world, while celebrating the beautiful minds that autism creates.


  1. Individuals living with autism can be helped in various ways to maximize their potential. If a person has difficuly in relationships they may need help whether they have autism or not. Autism is also often accompanied by other difficulties such as anxiety, depression, or certain associated physical ailments. Again, just as with neurotypical individuals who experience these difficulties, some type of treatment or even a cure could be indicated. Behaviors that are distracting or annoying to others such as flapping or licking furniture may also need attention to diminish them to a more functional or appropriate level. Because of the various symptoms associated with the autism spectrum, many individuals with autism may need more treatment than many neurotypicals if they desire to learn behaviors that will help them to keep a job, for example. In each case, we are helping the individual, as we help all individuals who come in for therapy, to improve the quality of their lives.

  2. As "Bruce" suggests, autism is a different and not necessarily a disordered way of being. However, there can be aspects of autism that are disordering. And it's those disordering aspects such as anxiety, depression, communication in some cases, biomedical, etc. that brings us all together to help people with autism lead fulfilling and productive lives to their greatest potential – with the differences inherent from having autism.

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  4. This is such an important issue. Is autism a puzzle to be solved or an individual to be embraced and loved? The balanced view that Cindy Ariel and I took as editors of "Voices from the Spectrum" is that autism is both depending on the individual's unique profile of strengths and weaknesses. The "disordering aspects" that Stephen Shore mentioned above must certainly be addressed vigorously.

    Still the interventions that help are best conducted within the family in which the child or adult is loved and nurtured. There is often the inconvenient grief for parents and siblings who mourn the loss of the child or sibling they hoped and longed for. On the other hand when these feelings are acknowledged, there are moments of great joy in the connections that occur in the very moments of living and loving an individual with autism.

    It takes time to heal this emotional wound. An excellent essay I often recommend to family members is "Don't Mourn for Us" by Jim Sinclair a man who has autism.

    As Jim wrote:

    "Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

    But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

    Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

    I invite you to look at our autism, and look at your grief, from our perspective:"

    Read the rest at

  5. The Center for Autism is again hosting the lecture series that in the past has offered information based in scientific study. Consider going, the lectures are free. Personally, I leave with a sense of hope, clarity, a thirst for knowing more, and the comfort of being in a room with people who also share a common goal: to be educated and aware of what is on the cutting edge of discovery that would benefit us all. So much that is shouted in prime time media... we have to sift through, questioning what is fact and what is what is fiction? Thank you again and again for this blog. Knowing I have a resource of reliable information is a huge comfort!

    A bumper sticker I once saw:
    Autism is not contagious. Ignorance is.
    Where is your source for reliable information?

    The loving Bubbie in the front row.
    Not the sage on the stage nor the guide on the side.