The Lived Experience of Autism

Background: In the past few years we have begun to speak of “autisms” as we describe a range of conditions that include symptoms clinicians deem autistic.  At the same time, the interpretative latitude for the words used to describe autism has broadened enormously.

Objectives: One result of  broadening is an increase in the identified autistic population.  As this has unfolded, biological studies show that we have identifiable differences, and more of us are loosely bound together by a group of shared biomarkers. Some possible biomarkers are de novo – and those tend to accompany the gravest disability.  That leaves a large number of us – me included – whose impairments are less severe.  We are the ones who inherit our difference from our parents, and pass it on to our children.

Methods: Hans Asperger recognized this family clustering when he described our population in 1938. Perhaps we are a lost tribe of history, now being identified and brought together by genetics and brain imaging studies.  Behavioral observations were the first clue, and biomarker tests prove the case. What does this mean for science and society today?

Results: If autism touches 1% of our population there are more than three million autistic Americans.  That’s a big population, one that until recently has had no voice. But that is changing, and it’s important for scientists to work with us as we begin to speak out and assert ourselves. While it’s true that autism delivers crushing disability to many, it also delivers extraordinary gifts to others.  Many of us live with both gifts and disability.  However, the medical and educational communities – indeed, most of society – tend to see us as broken.  We are evaluated by the ways in which we are less than typical people. What about seeing the ways in which we are more? As functional as I seem to you now, I have lived my whole life with this double-edged sword of autism – gift and disability – with the disability largely invisible to everyone but me.   I isolated myself through my blindness, society rejected me for the inappropriate behaviors they didn’t understand, and I felt like a failure. Yet today I see I am a success. 

Conclusions: Cancer is a disease to be cured.  Smallpox is a scourge to be eradicated.  Autism is neither.  We must embrace a more balanced view.  We need to find a balance between the extreme views of cause, accommodation, and cure that divide our community. The  nature of our population is emerging and the goal of autism science should be to maximize our success and remediate our disability. There is a great risk that the young people who are emerging as spokespersons for the autistic identity and neurodiversity movements will reject autism science if we do not recognize and embrace the complexity and range of the experience of being autistic. Scientists must understand and appreciate our gifts, and relieve our suffering. We have a great challenge and a great opportunity, together.