The Social Consequences of a Diagnosis on the Autism Spectrum

Lois Holzman, PhD
21
214

It’s time to change how we think about and relate to people whose makeup is or appears to be different from the norm. Currently, the dominant way in research, practice and the general public is to think of what’s different—let’s say a biological or neurological difference—as the source of disability and difficulty, and to relate to and treat (in various ways) that biological or neurological difference. But there’s another way to go, and more and more researchers and practitioners are taking it.

That other way is to see the social consequences of “being different” as the major source of difficulty, and to focus help and treatment on that. Those who share this view believe that developmental challenges for people of difference are—and should be related to as—social, regardless of any biological or neurological characteristic. Many of them draw inspiration from the early 20th century Soviet psychologist Lev Vygotsky who wrote that the biggest obstacle facing blind, deaf and retarded people was the “secondary disability” they suffer by virtue of how everyone relates to them and how they learn to relate to themselves as inferior, different, special, less than, etc. Vygotsky insisted that helping these people develop satisfying lives and contribute to their families and communities required paying attention to “the social environment of development” (Vygotsky, 1993).

But with today’s interventions designed to change or “fix” individuals and the neurological functioning and behaviors that cause distress for themselves and others, the social is being forced out of the picture.

Can we turn this around? Among the growing number who believe we can is University of Georgia professor and Vygotskian researcher Peter Smagorinsky. He believes that research and practice to support people of difference needs to be focused on the secondary disability—the social obstacles—by changing the social setting in which the individual is considered to be abnormal, sick, disordered, or in other terms deficient. He has just completed an important book with several other authors whose work does just that—Creating Positive Social Updrafts through Play and Performance: Fostering Creativity and Community among Autism-Spectrum Youth (Palgrave Macmillan, forthcoming, 2016). The book is focused around children and adults diagnosed on the autism spectrum, because far too often the social settings they’re in are isolating and stigmatizing, reinforcing the disability and stunting intellectual and emotional growth. As the authors in Smagorinsky’s book make clear, it doesn’t have to be that way. Each chapter of Creating Positive Social Updrafts… describes programs and provides vivid examples of how people of difference can find and build communities (in particular, artistic and performance-based ones) in which their difference is not only respected but makes a contribution.

One of the chapters is written by my good friend, the talented therapist Christine LaCerva, director of the Social Therapy Group. She does multi-family group therapy in which she invites, challenges and supports children (some of whom have been diagnosed on the autism spectrum) and their families to play and perform with new ways of seeing, speaking, listening and being with each other. The families create improvised scenes and conversations in which, with LaCerva’s help, the children actively participate and contribute. What LaCerva is doing as a therapist is working with these families to change the social setting in which their children are considered abnormal, and in that process, the ‘abnormality’ is transformed—they recognize how our society’s focus on disability, specialness and diagnosis has been hindering them from doing “what’s natural.”

One area where hindering occurs is language and conversation. LaCerva notes that when parents do not talk normally to their autistic children they may, unwittingly, be creating a secondary disability.

People say to infants: “Say goodbye to grandma!” They don’t know what a “goodbye” is or a “grandma” is, but you’re relating to them as a member of your language and conversational community. But autistic children often are not related to as a member of a shared community, of a language community. They are related to as outsiders, which I believe reinforces the alienation of the child in relationship to others. The child quickly learns that he or she is “special.” In my experience, how autistic children are related to is about as important as the disability itself. Ways of being in the world called “autistic” are part of the human experience. It is vitally important that we relate to autistic “ways of being” as something we share as human beings (LaCerva and Helm, 2011).

As someone who has been inspired by Vygotsky (Holzman, 2009, 2014), and one of the few who, like Smagorinsky, have followed through on the implications of his socio-cultural understanding of difference, I believe that he has much to offer to those of us working to remake psychiatric care.

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References:

  1. Holzman. L. (2104). Vygotskian-izing psychotherapy. Mind, Culture and Activity, 21, 184-199.
  2. Holzman, L. (2009). Vygotsky at work and play. NY: Routledge.
  3. LaCerva, C. (forthcoming, 2016). Social therapy and family play. In P. Smagorinsky (Ed.), Constructing positive social updrafts through play and performance: Fostering creativity and community among autism-spectrum youth. NY: Palgrave Macmillan.
  4. LaCerva, C., & Helm, C. (2011). Social therapy with children with special needs and their families. In C. Lobman & B. O’Neill (Eds.), Play and Performance: Play and Culture Studies, Volume 11 (pp. 180- 200). Lanham, MD: University Press of America.
  5. Smagorinsky, P. (Ed.) (forthcoming, 2016). Creating positive social updrafts through play and performance: Fostering creativity and community among autism-spectrum youth. NY: Palgrave Macmillan.
  6. Smagorinsky, P. (2011) Confessions of a mad professor: An autoethnographic consideration of neuroatypicality, extranormativity, and education. Teachers College Record, Volume 113, Number 8, 1701–1732.
  7. Vygotsky, L. S. (1993). The collected works of L. S. Vygotsky, Volume 2, The fundamentals of defectology. NY: Plenum.

 

 

21 COMMENTS

  1. I believe there is a way in which we are all ‘different,’ that is our uniqueness. If, for whatever reason, we feel ashamed for our differences, then it is the shame which will cause us difficulties, not the fact that we are transparent and on our sleeve in our differences.

    Whereas a culture which celebrates diversity and which sees the brilliance in each and every individual, however it is embodied and expressed, then we would not feel shame, but rather confidence in how we are different than others. Our differences are our gifts.

    Daring to be different is what brings change, not being the same as everyone, for the sake of ‘safety.’ That is an illusion. The ‘norm’ as it is today in the mainstream, is not the norm of nature, it is the opposite, which is why we are in such chronic and expanding social distress. Abuse, oppression, stigma, discrimination, and marginalization are of the norm. Is that what we want people to conform to, to be accepted into the norm? I think not.

    There is a school of thought which teaches that those whose differences are inherently visible and which challenge social norms, and therefore making a person vulnerable to social stigma and marginalization (via shaming), are old souls who are here to teach understanding, diversity, universal compassion, and unconditional love to humanity. No doubt, we need these teachers, very badly.

    This teaching rings profoundly true to me.

    • “There is a school of thought which teaches that those who … challenge social norms, … are old souls who are here to teach understanding, diversity, universal compassion, and unconditional love to humanity. No doubt, we need these teachers, very badly.” I definitely agree, Alex, and this is basically 100% the opposite of today’s psychiatric industry’s theology.

      And I find it promising that creativity and the arts are finally starting to stop being demonized by the psychiatric industry, who believe fine artists / stay at home mothers / active volunteers are “w/o work” and “unemployed.” I’m quite certain the DSM was written by left brain only thinking, material world only believing, people. And it is theorized by some that:

      “it is the right hemisphere that is designed to play a leading role … ‘the right brain knows that it needs the left brain, the left brain doesn’t know what it doesn’t know.’”

      And those who believe in the DSM do seem to not know what they don’t know. In addition to being very delusional, since they believe in a “bible” of scientifically invalid “mental illnesses.” A medicalization of all human emotions, and a fairly accurate description of the “serious” iatrogenic illnesses created with the psychiatric drugs.

      I do so hope the psychiatric industry wakes up, and realizes how harmful, and scientifically stupid their current belief system truly is. It was immoral to make up “mental illnesses,” torture and murder millions based upon such medical fictions, during WWII. And it’s still immoral, albeit profitable.

      • I will mention, too, that those of us who have been wise enough to know that art is important for children, and have run art programs for children for years, can very easily pick out children who are being mis-medicated, just by looking at the children’s art work.

        However, I find it shameful that art teachers have to point out children on drug cocktails with major drug interactions, when the doctors should not be putting little children on drug cocktails with known major drug interactions in the first place.

        But the doctors are, because today’s “bipolar” drug cocktail recommendations, which include combining the antidepressants, antipsychotics, and benzos, drug classes with known major drug interactions. Major drug interactions which are already medically known to make a person “mad as a hatter,” via anticholinergic toxidrome.

        Today’s “bipolar” drug cocktail recommendations should be changed to something not already medically known to make children “psychotic.”

      • “…this [that those who challenge social norms simply from their way of being are society’s true teachers] is basically 100% the opposite of today’s psychiatric industry’s theology.”

        Yes, indeed. Which is why I’d call this a shift in paradigm and perspective. Aka, radical change. We could at least consider it. After all, we know that psychiatry is, BY NO MEANS, the path to healing, personal growth, and enlightenment, but more so, the road to chronic illness, disability, and total chaos.

        Perhaps we should think about a 180 pole shift at this point. Seems the wrong people are at the top, providing horrible examples for society. I think we need to muster up the collective courage to take this journey of social transformation.

        For example, I think you have the exact right idea, Someone Else, regarding art. You are one of the leaders of radical social change, to my mind, because you are tapped into truth, creativity and light, and you stand by that so elegantly, with passion. I believe this is what we crave, whether we know it consciously or not.

  2. As I see it, giving the label “autism” (or giving a label to any “mental illness”) should stop. This is because the diagnosis of mental illness is based entirely on doctor’s subjective evaluations (they use check-lists). There are no blood tests, tissue tests, X-rays or any of that – no objective tests at all. Diagnosis made this way also fails to meet the Virchowian standard of disease.
    So, do these “mental illnesses” even exist? It is the label that creates all the difficulties of stigma, etc. I think doctors should simply focus on treating symptoms of the patients (such as stress, worry, socializing issues, etc.) without assigning fancy names (labels) to various mental illnesses.

  3. Hi Lois – “This Bridge Called My Back” was a really important text for me in understanding the social construction of difference, wondering if it was an influence at all for you?
    Thanks for writing this – it’s always good to hear about more critical psychology / pedagogy. I think it’s also key to remember that disabled activists and survivors of institutions themselves contributed a lot of intellectual labor, created a lot of the theory around social models of disability, and that it wasn’t just the work of more-enlightened or more-progressive psychologists.

  4. When I was a child in the late 1980’s, I was diagnosed as autistic. Back then, many doctors still believed that autism was caused by refrigerator parents. The doctor’s prescription for me was speech and play therapy. My parents were prescribed sound, non-shaming, non-accusatory advice on how to better encourage me to express myself. Within 4 years, I no longer met the diagnostic criteria for autism. Though psychiatry later came close to foiling my second chance for a happy life, this common-sense approach to educating and caring for children DID prevent me from being seriously and permanently hurt by my clinicians during the earliest years of my life. It terrifies me to watch autistic children being cruelly and endlessly pathologized by cash-crazed doctors who don’t know what they’re doing, don’t intend to deal with the long-term consequences of their reckless actions, and don’t have the cojones to look bad, inept, or overworked parents in the eyes and say “Children this age learn most of what they know about the world from whomever is or should be caring for them. As his/her parents, your absence and/or presence in your child/children’s lives has been a top contributor to the environments that your child/children have accurately judged as being too unbearable for them to live in. I want to help you change these environments so that your child/children don’t lose the will to live.” Thank you, Dr. Holzman, for bringing autistic people into Mad in America’s ongoing discussion about the pathologization of humanity.