New Project

Current project

Those of you who follow my blog know that my older brother is autistic, low functioning and nonverbal. On his 40th birthday I started a long-term photography project to try to figure out my relationship with him. It may be hard to believe, but I was never sure if my brother knew who I was. This of course is part and parcel of severe autism: aloneness and failure to recognize others as separate entities.

Over the years, I continued work on my photographic project about Michael and came to better understand him. Often, my understanding came by way of hindsight. The way it worked for me was to capture moments with my brother with my camera, come home, develop the film and inspect the results. It was very difficult for me to understand what was happening in the moment.

I assembled my photographs and, along with my recollections, family snapshots and input from my parents composed a narrative and photographic memoir about my relationship with Michael.

Impact on my parents

Michael was born only half a dozen years after the modern usage of the term ‘autism’ came into being. Leo Kanner wrote a paper in 1943 [1] describing a syndrome different than that of the low functioning children commonly seen at that time. In the parlance of the time, the low functioning individuals were known as ‘feeble minded’, ‘retarded’, ‘idiotic’ and ‘moronic’. Kanner’s seminal paper coined the term ‘infantile autism’ and hypothesized that it was different from schizophrenia, with which autistic traits of aloneness and concentration on self were previously associated.

New project

Having explored my relationship with my brother, I would like to explore the state of psychiatry and diagnosis during my brother’s childhood. By doing this, I will be able to better understand what my parents had to content with in terms of the medical and mental health support community.

I already know something about those times:

  • Shortly after Kanner’s paper was published, the family of the autistic child was blamed for his or her condition. The term ‘refrigerator mother’ was in common use well into the late 1960s at least.
  • Low functioning children were often warehoused in large mental institutions.
  • Very little support was available to families of low functioning children and to the children themselves.
  • Freudian psychoanalysis was in vogue.

Important resources

At present, I am gathering resources to study the social attitude toward people like my brother and the attitude of the medical community.

Among the resources I have identified are:

  • Inventing the Feeble Mind, by James W. Trent, Jr. [2]
  • Madness on the Couch, by Edward Dolnick [3]
  • The Willowbrook Wars, by David J. Rothman and Sheila M. Rothman [4]
  • Psychiatric Diagnosis, edited by Hagop S. Akiskal and William L. Webb [5]
  • The Child Who Never Grew, by Pearl S. Buck [6]
  • My Son’s Story, by John P. Frank [7]

I would deeply appreciate any additional information or resource that can detail the state of psychiatric care from the 1950s through the 1970s.

[1] Kanner L. Autistic disturbances of affective contact. Nervous Child 2, 217-250 (1943)

[2] Trent, J.W. Jr. Inventing the Feeble Mind. A History of Mental Retardation in the United States. Berkely: U. of California Press, 1995

[3] Dolnick, E. Madness on the Couch.Blaming the Victim in the Heyday of Psychoanalysis. New York: Simon & Schuster, 1998

[4] Rothman, D.J., Rothman, S.M. The Willowbrook Wars. A Decade of Struggle for Social Justice.New York: Harper & Row, 1984

[5] Akiskal, H.S., Webb, W.L. eds. Psychiatric Diagnosis. Exploration of Biological Predictors. New York: Spectrum Publications, 1978

[6] Buck, P.S. The Child Who Never Grew. New York: John Day, 1950

[7] Frank, J.P. My Son’s Story. New York: Alfred A. Knopf, 1952

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