VisionAware

My First Interaction with Autism

My first real job after graduating from college was teaching braille and remedial education to adults with visual impairments. One of my first students was an 18 year old girl who had had significant vision loss since birth. This sensory impairment seemed of little consequence compared with the other unusual behaviors she exhibited every day. She did the traditional “blindisms” rocking, rubbing her eyes, and holding her head in non-typical ways. Additionally, she did not converse, but made short monologs. She loved anything that started with “SP.” It took us more than a week to figure out the sp puzzle. Her “boyfriend’s” name was Spanish. Her favorite food was spaghetti, and her favorite musical group was the Spinners, etc. She was not the least bit interested in learning any of our adaptive skills. We had no term for her behaviors. Now I know she had ordinary autism.

The Autism Spectrum

My husband and I have a son who is blind and exhibited many of these same behaviors. He was 14 before anyone was willing to diagnose him with autism. A wide variety of neuropsychological and educational organizations refused to diagnose him with autism since he was blind. Today, autism is his primary diagnosis. Since 2000, both professionals and the general public have learned a great deal about autism. According to the Center for Disease Control One out of every 88 children is diagnosed with some autism spectrum disorder. This translates into over three million adults in this country who are somewhere on the autism spectrum. People often ask me, “why are there so many autistic people nowadays?” I answer that psychologists are much more likely to diagnose autism. People who once were identified as people with low IQ’s or as schizophrenic are now understood to be “on the autism spectrum.”

Identifying People with Autism

All disabilities are on some spectrum. I am totally blind and can do most everything except drive a car. There is a wide spectrum of visual impairments. Likewise, there is a great functional difference among people with autism or Asperger’s Syndrome. Most everyone would agree that Albert Einstein was on this spectrum. We used to call people like him, “Absent minded professors.” People who are brilliant but have poor social skills and don’t always remember to pay their bills, brush their teeth or remember where they put down their wallet may have Asperger’s. They are real gifts to our society. They are so focused on the art or science with which they are involved that everything else goes out of their mind.

People with autism may be less productive and may be very isolated. They often have areas of expertise such as vast knowledge of the Harry Potter stories or the ability to identify all the current and past whale species. Employers may not be willing to pay for these types of expertise. However, if a person with autism finds the right employment niche and has supportive coworkers he or she may be successful and happy in the job.

Concerns for People with Autism and Visual Impairments

We know a great deal now about how to help people on the spectrum succeed in work and relationships. I am concerned for the many adults with visual impairments who have never received any rehabilitation services related to their undiagnosed spectrum disorder. They like many folks in the past have been falsely determined to have low IQ’s. Since they exhibited “blindisms” which are very similar to self-stimulating behaviors of people with autism, they were assumed to be less intelligent than other people.

Lack of Support for Autism and Visual Impairments

One of the problems many families encounter is that there are very few on-going supports (daily living, housing, employment, etc.) for adults with visual impairments. On the other hand, since autism/Asperger’s is deemed a developmental disability, then these supports are available for adults on the autism spectrum. I believe with all my heart that thousands of adults with visual impairments could greatly benefit from receiving services from both the visual impairment and the spectrum disorder rehabilitation systems.

From my own personal experience my son, who is thirty one years old, never learned any mobility skills because none of the O&M instructors who worked with him had any training in working with adults with autism. He is smart enough to surf the internet, and play very sophisticated visual computer games, but cannot use a white cane to find his front door. He is not alone. He, like thousands of other people with both disabilities, has only received services related to his visual impairment. How much richer his life could be if just one of the professionals that have worked with him over the last three decades had understood how to work with both visual impairments and autism spectrum disorders.

What Can We Do?

What can we do to address this critical lack of cross-disability collaboration? Should vision rehabilitation teachers get more training on the autism spectrim? Should professionals that work with the developmental disability community learn more about visual impairments? What steps can be done to bring both groups together? One important first step for all of us is to learn more about autism. For more information, check out the Autism Society of America’s website.

Read about Blind Tom, an autistic musician.