The Social Consequences of a Diagnosis on the Autism Spectrum

Lois Holzman, PhD
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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.

 

 

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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.

          • That’s so interesting, Lois, I’d never considered that there are unequal opportunities to live creatively. I’m curious if you’d be willing to expand on that a bit.

            It’s my impression that everyone has the equal opportunity to live creatively, in that we are all inherently creative beings, so simply from the intention of doing so and following that process, we create that opportunity.

            Of course it would never occur to some people, this being a foreign concept to some.. But that’s really a matter of awakening to our spirit nature, to which, again, I feel everyone has the opportunity to do as they traverse life, so it would be more of a matter of personal choice and belief than actually not having opportunities to awaken. In fact, we usually encounter multiple opportunities in life to embrace and embody our creativity and learn our unique processes, regardless of what social norms dictate..

            But I’m very open to hearing how some would not have this opportunity. What could possibly stop us, once we’re awake to it? That’s tremendous personal power.

          • Thank you for the response, Lois.

            As to, “I think we’re touching upon a social inequality not recognized often enough—the unequal distribution of opportunities to live creatively instead of pseudo-scientifically.”

            I will agree it is unwise and inappropriate for our current society to pay doctors highly for making up “mental illnesses,” that have zero scientific validity. Then turn over a million little children into “bipolar” patients with the antidepressants and ADHD drugs, for profit.

            And today’s psychiatric industry’s recommended “cure” for the adverse reactions to the antidepressants and ADHD drugs, is to give these iatrogenically harmed children, plus the “autistic” children, drug cocktails medically known to create these symptoms:

            “memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”

            And these are the central symptoms of neuroleptic or poly pharmacy induced anticholinergic intoxication syndrome, not “bipolar,” nor the symptoms of “autism.” Drugs medically known to cause anticholinergic toxidrome include:

            “antihistamines, antipsychotics, antidepressants, and antiparkinsonian drugs[3] as well as atropine, benztropine, datura, and scopolamine.”

            Which are the same drug cocktails recommended to cure “bipolar.” And the neuroleptics are recommended for “autism.” And the psychiatrists call these drug induced symptoms “bipolar” or “schizophrenia” or “autism,” rather than confessing they are actually the drug induced, anticholinergic toxidrome.

            Yes, it is inappropriate, unwise, and unjust that our society refuses to pay those who are able to utilize both their left and right brain. And, instead, chooses to only pay those left brain only materialists, who claim to not know what they should know, based on having a medical education.

            Truly, it should not be an artist pointing out this medical evidence of the inappropriateness of today’s “bipolar” drug cocktail recommendations, and “autism” drug recommendations.

            I had an art teacher while in art school, actually break school policy and claim I had no potential, because a nemesis of hers claimed I had more potential than any student he’d ever taught. The head of the department, when confronted with this situation, did confess to me that the unethical professor was going through a hard time, since her child had just been diagnosed as “autistic.”

            I pray to God, even such a disrespectful and rule breaking professor, did not end up putting her “autistic” child on the neuroleptics.

            Lois, I hope you will consider addressing the impropriety, and known adverse drug reactions, of today’s neuroleptics / “autism” “wonder drugs.”

            And, yes, it would be nice if our society would start paying the artists / interior architects again some day, too. Refusing to do so, turns us into medical researchers able to point out “the dirty little secrets of the two original educated professions.”

            Thank you, Alex, for the compliments.

  3. I’ll share some of what I’ve observed, heard about and experienced, Alex, regarding lack of opportunity to exercise our creativity and, for some, to even have a sense that it is something we all have the capacity for. There’s the institutional level of of constraints on exercising our capacity to create. Schools are the number one culprit. Neighborhoods and communities in which there are few places and/or little time to do so are another. I’m sure you can think of others. Then there’s the dominant way we are socialized in our culture(s) to think about what creativity is—the product of individuals that are exceptional, the idea that some are creative and others are not. The squashing of dreams, the fear of looking silly…
    Is this helpful?

    • Ah, ok, I see what you’re talking about now–limited opportunities to be creative due to institutional oppression of our creative spirits. Yes, I agree with that, I experienced this myself going through the system, and even vocational rehabilitation, first as a client of this agency, and then a vocational rehabilitation counselor, for which I was eventually hired. They enjoyed creating their little empire, but they did indeed squash creativity in others (including me) in deeply stigmatizing ways. They felt really threatened by the individuality of others, they wanted sheeple on their staff, only, no disagreements, dissension, or discussion about it. Blech.

      I ended up winning a legal mediation against them, based on blatant discrimination, and they’re since closed due to loss of funding. What you say above was partly the reason that led up to all that, having to do with an arts program I was implementing.

      I’m long gone from the system and all that, and have been creating my own dreams for a while now, because this all taught me the value of standing in my truth regardless of social consequences. That was the most powerful experience I’ve ever had, and it led to complete transformation of my health, life, and consciousness, putting me directly on my creative (soul) path. Life has been fascinating ever since, to say the least.

      So yeah, I do get what you’re saying here, from my own experience. Thanks for clarifying.

      And yes, the public school systems are not exactly renowned for encouraging either creative thinking or being, and in fact, these can get kids into trouble for going against the norm, outside the box. Indeed, society aggressively discourages this via sabotage (squashing of dreams) and shaming (making others look silly).

      To me, that is institutional bullying, because these projections are insidious and can be rather harmful and traumatic, especially if one is vulnerable in the moment–either a developing child or someone recovering from disability, both dependent on positive mirroring from the environment, it is vital during these times.

      When I read, “living creatively” in your above comment, I wasn’t thinking about the environment and how it sabotages our efforts to create (which yes, in these toxic and oppressive environments, they certainly do). I interpreted this as living according to our own creative nature–our free will to choose our thoughts, focus, beliefs, and responses to the environment and events external to us, as opposed to attempting to apply someone else’s process and information to our own, which never works (square pegs in round holes), although that is what is expected in academic society, for one thing. To me, this is conforming to the norm, which is the opposite of living creatively, to my mind.

      When we live creatively, we explore our own spirits and get our own information, pertaining uniquely to us. No one else should have a say in this, we are our own beings. Even kids know their path, intuitively, if they are not derailed by sabotaging parenting, which, sadly, is all to often the case, from what I’ve seen.

      No matter who they are or with what unusual conditions they might be living, kids are not going to be what the adults want them to be, necessarily. They’re going to be their own people, whoever they are, and if they are not allowed to be, then it’s easy to predict a rough road ahead, until an awakening occurs to get people back to themselves.

      And to me, it seems that everyone has this particular choice: either to go along with society’s arbitrary rules based on research studies, what the professional ‘experts’ say, and what not (which I’d call living pseudo-scientifically); or to live by our own truth, regardless of what others say, think, believe, or how they judge.

      The latter takes great courage and fortitude because people who stand in their truth even when others are barking around them projecting shame or blame generate tremendous internal creative power, in that they are truly connected with their creative spirits–their TRUTH–rather than going along with others to avoid, as you say, feeling silly. When we live creatively, we don’t care what others think, that’s the power of it.

      Thank you so much, Lois, a lot of interesting things to sit with here. I think what you say is pivotal–why fix a person who is merely not like others? Let’s instead fix society so that it can accommodate diversity. That’s a lot of social healing waiting to happen.

      • Just to add one thing–I believe we find our true creative path when we connect with and honor our emotions. If we’ve been wounded, we can refine our emotional responses as we go along, that would be part of our healing, for the purpose of clarity among those communicating in society. Healing requires a high degree of permission to work through our repressed emotions, due to trauma, so it can get rather volatile, but I feel that can be very temporary, if we allow it, initially, trustingly, and safely.

        However, when we are cut off from our emotions (such as with psych drugs or through stigma, by being shamed for having passion in our emotional responses –which I find to be alive and interesting, not in the slightest off-putting as long as it is not demeaning to others, which unfortunately is often the case), then we are cut off from our heart, spirit, and feelings, so how on earth do we know in which direction to go?

        This is where we become unnecessarily dependent on others. Those that have a habit of shaming come from dysfunction and co-dependence, I have no doubt. That would be their shame and control issues to address and, hopefully, heal.

        So regardless of autism or any other label given to a distinctly different creative process, and what that might imply–mostly through stigma, I feel–every single one of us has feelings and emotions, which is what dictates our path in life, as we walk toward our grounding, inner peace, and joy.

        Artists are extremely connected to their emotions, which is how we create, that’s where it comes from. Assigning stigma and judgment to emotions is what screws up society, because when we judge or discourage full passionate emotions, we are denying our spirit. I can’t think of anything less mentally healthy and emotionally sound than that. To my mind, it’s rather sinister and sabotaging to judge our feelings and those of others, at least in the outcome.

        So indeed, if society were to start hearing and honoring emotions, creativity, and heart-based consciousness–as opposed to intellectual academic brain-centered consciousness–then perhaps artists and others who cherish their emotions will not be driven insane by an uptight non-permission based society.

        I believe this is where we can make a huge shift in social consciousness, for those that can tolerate such a shift. It’s hard work, but from experience, I’d say it is so well worth it, to awaken to our emotional journey. That is our most reliable reality, because we know what we feel, when we allow ourselves to actually feel. This is universal, so there is not stigma in this paradigm. We are all emotional beings, that is where we find life. Labels are easily dispensable, but people are not–at least, they shouldn’t be, and wouldn’t be, in a healthy society.

        • Absolutely agree, Alex, “Let’s instead fix society so that it can accommodate diversity.”

          I’m now working on a printing project with the children I work with, that inspired me to turn a backwards mosaic / Mondrian inspired depiction of the US flag into a forward facing American flag, that I think I should make into a bumper sticker, if it turns out looking good.

          With a reminder to “Love the mosaic that is America,” or something to that effect. Since this is a country which was founded originally, upon Christian – Judaeo ethics. But has been turned into a backwards thinking America, by today’s deceive, stigmatize and drug as many as possible psycho / pharmaceutical industries.

          “If the American people ever allow private banks to control the issue of their currency … the banks and corporations that will grow up around them will deprive the people of all property until their children wake up homeless on the continent their Fathers conquered….”

          Today’s psycho / pharmaceutical industries are among these evil “corporations,” aiding and abetting in the crimes of today’s fiscally irresponsible bankers, of whom Thomas Jefferson forewarned us. It’s time to end this “pathologization of humanity,” and break up today’s “too big to fail” banks, and “The issuing power should be taken from the banks and restored to the people, to whom it properly belongs.”

          The way our current society is structured, is the problem. I do so hope our government, the medical community and mainstream religions will wake up, and realize that espousing belief in made up “mental illnesses,” then torturing and murdering millions based upon such medical fictions, is just as unethical today, as it was in Nazi Germany.

          And, it does appear this anti-Semitic manifesto is the playbook being utilized by today’s fiscally irresponsible bankers and corporations. I do so hope to avoid a WWIII.

          http://www.biblebelievers.org.au/przion1.htm

          Are the “professionals,” who are blindly defaming, torturing, and murdering other human beings for profit, aware of this bigger picture? Artists are also wise enough to know they have to step back, and look at the bigger picture occasionally, rather than just dwell on the minutia. Divide and conquer is a well known war tactic, psychiatrists, and that’s how your DSM “bible” is being used, to divide, steal from, and conquer this nation. Please stop.

          • You made me think of one of my favorite quotes, Someone Else, by Marianne Williamson. I’ve posted it here a couple of times, and I think it’s relevant to what you are saying and often say.

            This feels sound to me in such a way that if each of us believed in ourselves to this degree, the world would HAVE to change, as it is the natural order of things to evolve, it is inevitable. I think this is a powerful and light-supported message that can become a widespread reality:

            “Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people will not feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It is not just in some of us; it is in everyone and as we let our own light shine, we unconsciously give others permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

          • Oh, and a big YES to this–

            “Artists are also wise enough to know they have to step back, and look at the bigger picture occasionally, rather than just dwell on the minutia.”

            What else can life be if not art, and we the creators of our own? There is no manual, really. We’re making it up as we go along, moment to moment, step by step. It’s good to have a broad perspective, to see the big picture as we go along–what I would call pure present time heart-mind alignment. Right on, SE.

  4. 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.

  6. 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.

  8. 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.