“To review the concept of identity means to sketch its history… ‘Identity’ and ‘identity crisis’ have in popular and scientific usage become terms which alternatively circumscribe something so large and so seemingly self-evident that to deman a definition would almost seem petty… The quotation marks are as important as the term they bracket: everybody has heard of ‘identity crisis’ and it arouses a mixture of curiosity, mirth, and discomfort which yet promises, by the very play on the word ‘crisis’, not to be something quite as fatal as it sounds… It may be a good thing that the word ‘crisis’ no longer connotes impending catastrophe, which at one time seemed to be an obstacle to the understanding of the term. It is now being accepted as designating a necessary turning point, a crucial moment, when development must move one way or another, marshaling resources of growth, recovery and further differentiation. This proves applicable to many situations: a crisis in individual development or in the emergence of a new elite, in the therapy of an individual or in the tensions of rapid historical change.” – Erik Erikson (1968) Prologue to ‘Identity: Youth and Crisis’
Autism is a disorder of the modern world. First identified in 1912 by Eugene Bleuler, father of schizophrenia, it has undergone a stunning transformation in it’s almost 100 years of existence. The autism identity of yesterday bears no resemblance to the autism identity we know today. And our understanding and response to it has paradigmatically changed as each decade of its existence passes by.
It has been said that the increasing rates of autism have pushed us into a crisis situation, that autism is an epidemic sweeping the world. However, I propose that it is the Autism Identity which is facing the crisis; as our thinking about autism has become so fragmented – dividing support, resources, funding and research in a culture war between advocates.
On the one hand, there are those who believe that autism is not a mental health issue, rather, it is a biomedical/environmental one, and should be treated accordingly until it is cured. The culprits for the biomedical condition known as autism are vaccinations, processed foods, and vitamin deficiencies.
On the other hand, there are those who believe that autism is a condition that manifests in the brain and is the result of genetic influences on the brain’s development. Although this school still offers a biomedical explanation of autism, it is markedly different in its approach to understanding autism.
On yet another hand (or let’s say the foot), there are those who think we are wasting our time and resources looking for a cure that doesn’t exist. That people with autism fundamentally aren’t different from other humans in their basic needs and deserve equality of opportunity.
On the toe of that foot is yet another perspective that places the autistic mind and condition as being one of higher cognitive capacity than the non-autistic mind… perhaps providing a clue to the next phase of human evolution.
The origins, causes, and implications of autism have been debated and disputed since its identification in the early twentieth century. With diagnosis rates increasing at an exponential level in the past ten years, many say that we are facing an Autism Crisis. But in many ways, this crisis of autism has been exacerbated by the Autism Identity Crisis, which (as all identity crises do) is preventing us from advancing our own development and understanding of autism… what it is, where it comes from, why it’s here and what it means.
This timeline/essay/blog takes a page from Erikson’s Theory of Identity Crisis and “sketches the history of it” with the hope that the Autism Identity Crisis is “accepted as designating a necessary turning point, a crucial moment, when development must move one way or another, marshalling resources of growth, recovery and further differentiation.”
1943 – Leo Kanner wrote a paper called, Autistic Disturbance of Affective Contact, describing the autistic condition and creating the basis of the current psychological characterizations of Autism.
1944 - Hans Asperger wrote of Autistic Psychopathy in Childhood, however the subjects of his study had language development, whereas in Kanner’s Autism study, the children observed did not.
1950 – a landmark book on child psychology was published by Erik Erikson called Childhood and Society. Erikson was a student of Freud (I think he was banging Freud’s daughter) except he believed that sociality rather than sexuality, was the key to childhood development. In chapter 5 of Childhood and Society, Erikson writes of “Jean” a girl with “infantile schizophrenia” calling the condition a state of Early Ego Failure possibly caused by lack “maternal rejection” (though he indicates that this is debatable). When you read about Jean you can’t help but to notice that she is autistic… definitely…
1965 – Bernard Rimland, father of an autistic child and rejector of the Freudian view of autism, wrote Infantile Autism. Rimland was certain that autism had biological foundations, not psychological ones and dedicated his career to finding those biological foundations. Rimland’s case was so compelling that Leo Kanner himself, a proponent of the psychological basis of autism, wrote the forward to Rimland’s book, and conceded that autism was, most likely, a neurological condition rather than one induced by “refrigerator mothers”.
1967 – another Freudian, Bruno Bettelheim published The Empty Fortress: Infantile Autism and the Birth of the Self. Bettelheim’s book, which upheld the status quo version of autism, continued to fuel the scientific, psycho-social view of autism as being caused by maternal rejection.
1967 – was also the year that Rimland established the Autism Research Institute and starting compiling a database of over 40,000 case studies of autism from 60 different countries. He also started advocating for more biomedical research and treatments.
1985 – the article Does the autistic child have a ‘theory of mind’ by Simon Baron-Cohen, Alan Leslie and Uta Frith was published. Keeping in with the psychological school of thought, but shifting away from a Freudian school and into Piaget’s realm. It was the Theory of Mind (ToM) approach which first opened the door to the possibility of autism as being tied to the cognitive capacity of people to empathize with the other, or understand that the other had a unique perspective of their own.
1986 – a voice emerged for the autistic people like never before. Dr. Temple Grandin, who was condemned with the label of autism in the 1950s, published Emergence: Labeled Autistic, a first hand account of her life and experiences growing up. It was an inspirational story of a brilliant woman who managed to overcome her label and find a space for herself in society.
1988 – Autism infected the hearts and minds of everyone through the production of the movie Rain Man. Dustin Hoffman’s portrayal of autistic savant Kim Peek won him the academy award. And almost overnight, the majority of North Americans were exposed to autism. It is worth noting that Bernard Rimland played a key consulting role on the movie.
Then everything changed in the Nineties.
In the 1990’s Rimland started cautioning about the increase in autism rates across America and sounding alarm bells about the correlations between these rates, and mercury levels in vaccinations. Facing many barriers and criticisms of his research, Rimland took his fight to parents, and appealed to them for support and resources. Through this advocacy, the group Defeat Autism Now emerged.
With the promises of treatments and cures for autism, the DAN network grew with the increasing diagnosis rates. Parents felt as though they had been abandoned by the institutional health care system, and institutional health care system was unable to adapt to the numbers of autistic children they were seeing coming through their offices.
Behavioural therapy was proving to be most effective in dealing with autism. Based on the principles of conditioning and controlling the environment, preschools and classrooms were able to meagerly integrate the increasing numbers of autistic children into their curriculum’s. Behavioural therapy was believed to be so effective, that parents started advocating for intensive (and expensive) behavioural programs, to be covered by the health care system.
This was a difficult situation for the health care system to deal with. As behavioural therapy is not considered medical intervention, rather a psychological intervention… the health care system did not quite know how to handle it.
Alongside the fight for behavioural intervention and therapy, the DAN group was conducting research on the autism-vaccine connection. Here, the focus of therapy was not to integrate autism into the community, it was to eliminate it all together. Autism, as it was presented by DAN and similar parent advocacy and research organizations in America, was a debilitating disease caused by vaccination injury.
People began cashing in on the notion that autism could be treated and cured through vitamins and diet and special oxygen chambers, as parents, desperate to cure their children, started handing over their money and their lives to it.
In the late 1990’s and early millennium, the “first voice” perspective, as first demonstrated in the mid-80’s by Temple Grandin, began to emerge. More people who were living with autism and who had voices to talk about their own fates and futures were writing books, and talking about their perspective, and asking for acceptance of their condition… The notion of an autistic culture was being born as early as anti-vaccination movement, but it was up against a louder, stronger culture of frustrated parents and beautiful celebrities, whose autistic children had shattered their dreams of the perfect white picket family.
Meanwhile, in the UK, ToM researcher, and Autism Research Centre Director Simon Baron-Cohen was expanding his theories on autism and began making a link between autism and the male-brain. In 2003 he published The Essential Difference: Men, Women and the Extreme Male Brain, a book which proposed that autism was an extreme manifestation of a highly systemizing (male) brain. The ToM school of thought considers the neurological foundations of autism, how the autistic brain works in processing the world, but does little to offer a cause or cure to it. Rather, it is presented as a “type” of brain which processes the world in this extremely male way.
As money poured into the pockets of researchers trying to find the cause of and cure for autism, another key organization emerged. The Autistic Self-Advocacy Network was very recently founded by Ari Ne’eman, a young man on the spectrum, which overtly called the idea of “curing autism” into question.
The ASAN was “created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum.” Much in the same way Mr. Rimland created the Autism Research Institute back in 1967, to combat the public perception of autism as a “refrigerator mother’s syndrome”, Mr. Ne’eman is possibly taking the formation of Autism Identity to the next level.
Today there are many theories and studies about autism, and all seems to be dichotomized around a mind vs. body debate. Herein lies the crux of the Autism Identity Crisis.
Autism is either a disease induced by environmental factors, or it is embedded in our genetic code. Autism is either a physical condition, or a cognitive one…. The mind-body split of our understanding of autism has created an important and damaging split of expertise.
It is easily understood why the attitudes of parents of autistic children not willing to accept that autism as genetic component, corresponds to a desire to rid their child of the autism curse. There is no doubt that for these families, autism is a curse which prevents them from participating as “normal” families do. Autism is a curse which means that their children will not grow up with the same cultural values. Autism is a curse of difference and abnormality. If you hold the view that autism is this curse, it is hard to believe that it was your own DNA which caused it. If autism is genetic, and autism is a curse, then you have cursed your children with your faulty genes.
It is also easily understood why so much research money is poured into the promise of a cure for autism. Autism presents the system… all of the systems… with problems related to outdated and ineffective policy and operation.
These two things feed into one another, and they spiral and swirl around in a reflexive feedback loop while they both fail miserably at addressing the educational and social needs of autistic people.
There is an autism crisis, but it has nothing to do with the increasing numbers of diagnosis… it has to do with our response to it, and the development of our understanding of it. It has to do with our inability to honestly and objectively get to the real answer about autism, partially because it is so complex, but mainly because we are afraid of what it is ultimately going to tell us about ourselves and our society.
I will close with part of the excerpt I began with, but this time, adapted (bolded text):
“To review the concept of autism means to sketch its history… ‘Autism‘ and ‘autism crisis’ have in popular and scientific usage become terms which alternatively circumscribe something so complex and so seemingly self-evident that to demand a classification would almost seem petty… The quotation marks are as important as the term they bracket: everybody has heard of the ‘autism crisis’ and it arouses a mixture of curiousity, mirth, and discomfort which yet promises, by the very play on the word ‘crisis’, not to be something quite as fatal as it sounds… I hope we will see the day that the word ‘autism‘ no longer connotes impending catastrophe, which at one time seemed to be an obstacle to the understanding of the term. And that the ‘autism crisis’ is accepted as designating a necessary turning point, a crucial moment, when our understanding of it must move one way or another, marshalling resources of growth, recovery and further differentiation. This proves applicable to many situations: a crisis in individual development or in the emergence of a new elite, in the therapy of an individual or in the tensions of rapid historical change.”




