My Road to Academia pt 1: The Road to my MSc
Aiming to be a clinical psychologist, in 2003 I became a class teacher at a school for children with profound and multiple learning difficulties, based in Enfield, London, UK. I ran a class of 9-10 children, between the ages of 8-10 and had the help of 4 full-time classroom assistants. The children had a variety of difficulties; all but one were non verbal and we were working on everything from eye-tracking, to be social skills such as being able to sit at a table – depending on the child’s ability level. I had a truly wonderful time. People would periodically congratulate me on doing such a ‘worthy’ job, but honestly? I loved it so much, it was self-serving enough that it never seemed appropriate to accept such praise.
However, during my time in the classroom, I was struck by 2 major observations:
(1) That children were often labelled as ‘autistic’ when they, in many, respects did not meet the full criteria for autism. One example was a girl, E, whom appeared at first glance to have ‘classic’ autism and show the triad of impairments: a lack of (and a lack of interest in) social relationships, a lack of social communication skills, and a rigidity of behavior, as exhibited by her repetitive playing behaviors. However, several times, as she got to know me, she would seek out contact with me, and seek out eye contact: very contrary to what one would expect in a case of autism.
So, I observed E more closely. E also suffered from ‘global delay’ and ‘pervasive personality disorder’, meaning that E had very limited intellectual abilities, and a tendency towards aggression. I wondered whether E did not want social relationships or whether she did not have the intellectual skills to seek them out – I concluded that it was some of both. I also watched her repetitive behaviors. In autism, we expect these behavior to be self-soothing. Current theory runs something along the lines of that they soothe the individual, and help them impose some sense of order on a world they do not understand. E was not self-soothing, E was clearly highly stimulated and highly interested in her repetition (for the record, she liked to speedily flick through the corner of a magazine over and over again). What was soothing to one child, was stimulating to one with a lower intellectual threshold.
It seemed to me that E was misdiagnosed for as ‘autistic’ 3 reasons: (1) E’s disorders had genuine symptom overlap (co-morbidity) with autism, possibly resulting from the organic origins of her disorders; (2) E was perceived as showing behaviors (self soothing) that were misperceived by the rater, likely due to their own expectations (rater bias); and (3) E showed features of different disorders, for very different reasons.
(2) The second observation came at parent’s evening. S was a lively, bubbly girl with Angelman’s syndrome. Angelman’s is characterized, in part, by intellectual disability so I was pleased to report to S’s Mum that S was doing very well, and had recently completed the task of ‘block stacking’. S’s Mum was also pleased at this progress and the evening went ahead well. At the end we chatted about the emotional and social health of S, and her Mum said that she had some concerns that S would come home, go up to her room and shut the door, put on a DVD and no longer want her family to sit with her – she wanted to be alone.
Initially, I reassured S’s Mum that this was quite normal for a girl entering her teenage years. Hormones affect many people the same way – and this was the classic teenage response. Hard for parents of children of all abilities, but a good step in development. After S’s Mum left, I could really think about what I had passed: here I was, talking about a girl stacking blocks one on top of the other. Here S’s Mum was talking about the same girl putting on a DVD and amusing herself in her room. Kind of world’s apart. I looked around my classroom: when did I give S the chance to display such ‘advanced’ behavior? All the toys were for babies / children under 5. When did I give S a chance to show me what she could do? Was S’s presentation – and her inability – just a factor of the environment that I (in the best of intention) had provided?
I was fascinated that in both E and S the presentation of quite genetically-originating disorders was so modified by the environment, and so skewed by the observer. I was fascinated by behaviors around the core of a disorder (e.g. E’s autistic behaviors when she did not have autism) and I wanted to know: how did genes, environments, and observers interact to create the picture of a child we treat in clinics?
I found no answers to my questions, but felt that this was vital puzzle, so I decided to return to academia to try to answer questions of gene-environment interplay and especially, how the environment could modify the genetic substrate of the individual, in the eyes of the perceiver.
Image credits: http://www.waverley-school.com/page/?title=School&pid=2