Over the last few ‘Letters...’ I have questioned, in different ways, the validity of many aspects of both ‘professionalism’ and also consensually agreed ideas of what it means to be normal. There is a reason for this, one that is particularly valid when constructing an overview of the ways in which both individuals with autism and their families are perceived and treated.
Anyone who falls into this group will know only too well that ‘assessment’ becomes an ongoing feature of life with autism. In itself, this is theoretically a good thing as it is impossible to evaluate progress, or lack of it, without assessment and it is an essential tool in planning and implementing learning structures and strategies. But...there is a problem, an invisible and unacknowledged problem. Parents, however, are often acutely aware of what this problem is but are often not confident enough to articulate it.
The problem is that ‘assessments’ look at the child and often at parents and family too, but never at the professionals who are an integral, and enormously influential, part of the autistic child’s daily experience. Let me illustrate this with some examples from our own experience.
When my son was younger we were referred by our GP to a psychologist who was described to us as a specialist in autism. We had to drive some distance for our appointments with her which were held in a drab room containing little but piled up desks and chairs. There was absolutely nothing there to engage a seven year-old autistic child.
I had requested a 9am appointment on this particular occasion because we had previously been kept waiting for ages each time we had gone to see her, which was a recipe for stressful disaster where my son was concerned. Although the logistics of getting him organised and driving the twenty-five miles to the clinic were not easy we arrived bang on time. And then we waited...and waited.... in the drab room amidst the piles of desks and chairs with nothing to do.
My son became increasingly bored (as did I) and he kept making strenuous efforts to leave. I made increasingly manic efforts to entertain him.
Forty minutes later the psychologist’s car pulled up beneath the window with someone in the passenger seat. In full view of us they continued an animated conversation before getting out and entering the building. She then stopped for a chat with other members of staff before finally entering the room, nearly an hour late.
My son glared at her as she sat down because he knew from experience that we were now in for a period of protracted blathering, which meant even longer shut in the drab room with the piled up furniture. He walked over to her and head-butted her arm, not hard, but his expression conveyed the meaning of his gesture. I would have liked to have done the same myself but, not being autistic, I wouldn’t have got away with it.
A few years later I accessed all my son’s medical and educational records under the Freedom of Information Act. This woman’s record of this specific encounter stated that my son was beginning to display aggressive behaviour and she feared he was no longer under my control. At no time had this been stated to me but this opinion had been disseminated to other professionals. Both her own conduct and the environment we were in were entirely invisible in this ‘assessment’ .
I do not need to point out that opinions such as this can carry frighteningly powerful weight because of the assumed status and objectivity of the assessor.
On another occasion when he was younger still we were referred to a therapist who wanted to bring a video camera into our living room to record his behaviours for assessment. I explained patiently and I thought clearly to her how, because of the severity of his autism, he was terrified both of cameras and of strangers in our home and that the combination of these two would terrify him. On this occasion I was defined as an anxious mother who was overly nervous of being filmed.
I could go on...and on, and on because our lives are littered with such incidents, as I know are those of many other parents and children. Like the Dublin mother I heard from whose autistic son was having sleeping problems. He was the youngest of five so she was an experienced mum whose older children had no problems whatsoever. She had been allotted a ‘sleep specialist’ to help her establish a good bedtime routine. The sleep specialist unfortunately worked a normal working day and so turned up to do a dummy run with this child in the early evening. He, predictably, did not take well to being pyjama'd and tucked up by tea-time and so it is not difficult to see how skewed any subsequent analysis of his behaviour would be, a fact which left his competent mother boiling with anger but afraid to speak up for fear of negative labelling.
Psychologists, teachers, therapists and any other professionals that have contact with our children cannot remain behind this Harry-Potteresque cloak of invisibility. Assessments of our children will be neither valid nor fully professional until they are fully holistic. This means including all the relevant variables, including the role and performance of any professional involved and giving parents an equal opportunity to voice their perspectives without fear of repercussions or negative labelling.
Professional invisibility is a dynamic that must be addressed if assessment is to be either accurate or meaningful...........
Gaia Charis, April, 2010.