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Published on July 13th, 2016 | from CAMH

Forty-year follow-up of a Clarke Institute client with autism: Partial treatment success?

By Dr. Stephen Kish, Senior Scientist and Head of the Human Brain Laboratory in the Research Imaging Centre

While skimming through the recent batch of CAMH research publications, I was hoping to find a success story showing that one of our clinical interventions was helpful.  I discovered an article along these lines – but in an unexpected twist, the results spanned more than 40 years. In a recent publication in The Journal of Autism Developmental Disorders, Dr. Christopher Webster and colleagues described their re-examination of a person with autism spectrum disorder, referred to as “Geoff,” more than 40 years after first receiving treatment. Geoff was initially treated at the age of six, at the Clarke Institute of Psychiatry, one of the founding hospitals of CAMH.

Although clinical decisions are not usually based on single subjects, sometimes case studies can illustrate a point in challenging cases such as this one.

The 2016 article referred to the original 1973 publication in the same journal, by Dr. Webster and colleagues from the Clarke Institute and University of Toronto, in which Geoff’s case was first described. The problem faced by the Clarke Institute team in 1973 was how to improve communication skills in the young boy — communication deficits being one of the core difficulties in persons with autism.

Geoff was 5 ½ when first referred to the Clarke, and a diagnosis of autistic syndrome was made. Geoff did not talk or respond to verbal communications, and he exhibited repetitive behaviours such as flapping his arms, jumping up and down, and making loud noises. He had frequent temper tantrums. A variety of behavioural interventions were attempted (speech training, following verbal commands and discriminating among objects), without success.  In the course of treatment, an examination of videotape recordings suggested that Geoff might have been responding to gestures of the therapists:  “When we said ‘stand up’ for example, we tended to raise our hands. It seemed that these movements prompted Geoff to respond,” the authors wrote.

Twelve weeks of sign language training, twice a week for hourly sessions, resulted in improved communication as Geoff responded accurately to signs, unlike his response to verbal cues. In addition, the authors wrote, “… Geoff [was] becoming more manageable and less inclined to exhibit  bizarre behaviors… One of the most encouraging aspects of the gestural training program was Geoff’s tendency to use gestures himself… Very often we found that we were the ones that failed to respond to his commands… Another encouraging aspect was that he followed sign directions from adults whom he had never seen before…”  Later, the team produced 35 mm “moving pictures” for schools aimed at helping nonverbal children with autism who could “not profit from speech-only training.”

The 40 year follow-up finds Geoff in a residential treatment centre in Ontario.  In this respect, the authors acknowledge that back in 1973 they “tended to underestimate the long-term services that many of these children, as they grow into adolescence and adulthood, do actually require”.  But they found that their intervention had endured. “Geoff has hung on to the signs taught to him early on… Geoff is able to verbalize many words… He also chooses at times to form short to moderate length sentences … His communications, both verbal and gestural, are constantly evolving to help him express his wishes, and he seems very excited when he has made clear his needs or wants and we have understood them.”

The authors admit that the merits and limitations of the use of sign language in autism are still today unresolved and that rigorous clinical trials are still needed to select the best treatment possibilities for children with autism.  They also acknowledge that “Geoff’s repertoire for signing and speech may be limited” but do feel that the sign language training begun 40 years ago “has helped him remain connected to the real world of people anxious for him to enjoy his life to the maximum extent possible.”

Indeed, adding to the evidence base on what is effective, at an early age and across the lifespan, is needed to continue to inform the delivery of therapy and services. Parents of children with autism have no doubt been closely following the recent press reports regarding the Ontario Ministry of Children and Youth Services’ attempts to provide the best services, with limited funds, to those affected by autism.

My hope is that results of ongoing research at CAMH in autism – for example, in genetics, brain imaging and brain stimulation – will identify a variety of new approaches  to better treat autism and improve  communication skills in this disorder for which the causes remain unknown. Researchers such as Dr. John Vincent and Dr. Peter Szatmari are investigating the genetic contributions to this disorder. Dr. Stephanie Ameis and Dr. Pablo Rusjean are exploring novel interventions such as brain stimulation, and using brain imaging to determine how it may affect the brain.

Image courtesy of the CAMH Archives

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