REFLECTIONS AS A RESULT OF APAC (Aug ’13) ATTENDANCE
The following article by Lisa Risby is reproduced by kind permission of ATAC (Action for Tasmanian Autistic Children)
It is more than five months since I attended the APAC (Asia Pacific Autism Conference) in Adelaide. I needed processing time because, as a mother, I find autism conferences very emotionally draining. After this conference, however, I began to feel an incipient sense of guilt, why?
I’m a parent who, after my son’s diagnosis in 1997, researched the empirically based evidence on autism therapies and made a deliberate choice when my son James was three, to co-ordinate an intensive behavioural home based intervention program. We embraced this teaching method and tried to ensure consistency for James across all settings. I have always felt proud of the achievements that James has made socially, academically and emotionally since we started our ABA programme.
So why the guilt? On Day One of the Conference, I met two mothers whose young sons were following Floortime programs. I encouraged them as we swapped stories of our boys and examples of early progress. I wasn’t then, prepared, when they both recoiled in horror when I uttered the acronym “ABA”. The looks on their faces made me feel as though I had done something wrong and they went on to say that they would never contemplate “putting their child through” ABA.
On both Day One and Day Two, I listened to Dr Eric Courchesne from UCLA; his studies of the brains of children with ASD has found a certain pattern of growth which may ultimately lead to a blood test which could detect autistic brain development quite early so that intervention could begin as soon as
possible. Such a blood test to indicate ASD would mean autism is conceptualised as a medical condition which should make it easier to argue for funded interventions.
Also on Day Two I also listened to Professor Jacqueline Roberts from Griffith University who talked about the need for intervention to be early and intensive enough and later in
the conference, on the need for therapies to be evidence-based. (Prof Roberts also implied that there needed to be consistency too.)
On the evening of Day Two, I attended a play, “History of Autism”, performed and written by a theatre group comprised of high
functioning adults on the autism spectrum (Julian Jaensch, Director and the Company @ Ensemble). A series of monologues by the characters Dr Leo Kanner and Dr Hans Asperger introduced vignettes which showed the historical evolution of autism as a clinical diagnosis in the twentieth century.
The difficulties experienced by those on the spectrum undergoing different treatments, arising as a result of different perspectives of the causes of the condition at different times, were portrayed vividly and often poignantly. Particularly “chilling” for me was the scene showing psychiatrists and the “refrigerator mother” theory. In the Director’s Notes, Julian Jaensch writes that the play aims to show how “people on the Autism spectrum struggle for a voice and a sense of identity.” There was much to like, laugh at and cry about in “History of Autism” and the play managed to compress a lot of “history” into its dramatic form.
Two aspects of the play made me feel distinctly uncomfortable: one was its portrayal of Dr Ivar Lovaas and ABA. A blackly comedic scene with the punning title “Nobody Lovaas”, showed a 1960’s ABA therapy session involving electric shock as feedback for incorrect responses. It is true that Lovaas did initially use such aversives in the early development and refining of ABA as a methodology.
Current ABA practice, which focuses on positive reinforcement, was not depicted in the play. Furthermore, the phrase that I had focused on 17 years ago when searching for a therapy for James and reading reports of Lovaas’ Young Autism Project where nearly half of the children in the study group had
become “indistinguishable from their peers” as a result of ABA, was turned in the play into an insult to all those with ASD whose families or who themselves have wanted to undergo therapy and change.
The play moved on to address the second issue about which I am concerned: the pro-cure versus neuro-diversity debate which is
currently raging. Should ASD be seen as a medical condition which must be cured or should it be embraced as part of the richness of humanity and not therefore in need of interference or treatment?
This difference of opinion was a subtext of many of the presentations at the conference and was taken up most vociferously by Ari Ne’eman who advises President Obama and is President of the Autistic Self- Advocacy Network. After the performance I took a wrong turn in leaving the theatre. I came upon one of the young adult actors having a melt-down and being comforted by his mother. He clearly, was in need of some support.
I have no issue with very high functioning adults with ASD who self-advocate and express their individuality and identity. I am
concerned that this debate, which is arguably a false dichotomy, could become so divisive that the majority of individuals with ASD, who cannot articulate their needs nor fully perceive their difficulties and deficits, could miss out on the therapy, education and supports they require in order to fulfil their potential. If ASD is not viewed from a medical perspective, will individuals needing help miss out??
In the final scene of the play, set in 2085, “Dr Leo Kanner” says, “ … the main lesson is that whatever is discovered about autism in the future… is to always try to understand and appreciate the individual for who they are, because that’s the only way they will be able to show you their true strength.” I would go further and add that those with the highest needs, must be given the greatest support, particularly if they lack the insight
into what it is that they need most.
Michael Gillies Smith, the final speaker in the Closing Plenary session, pointed to a possible solution to the diversity/cure dilemma: the intensity of our own individual experience can blind us to the fact that we share a common humanity and it is this One-ness that we share which can activate fundamental connection, unity and growth.
Perhaps some high functioning people with ASD might think it is the right of those with
higher needs, communication deficits and social difficulties to remain un-changed, but as a mother who has done her best to help her own child learn and grow and change, I cannot agree. On further reflection, I do not feel guilty about the near seventeen years of behavioural intervention we have followed with James, as I have a happy, capable son, who enthusiastically participates in education, paid and voluntary work, plays two instruments well, has coped with international flights and foreign cultures, is lovingly involved in family life and has a strong and positive sense of self. James’ condition has not improved to the extent that he is “indistinguishable from his peers” but he fits into his community and family and he has enriched our lives so very much by his being here.
About the Author:
Lisa Risby (formerly Minchin) has a 19-year-old son with moderate ASD who has been following an ABA program for the past sixteen and a half years. Lisa served on the Committee of Autism Tasmania 1997-2000 and was a member of the Executive of Young Autism Support (YAST)/ABIT 1998-2005. She currently works as a support teacher in TasTAFE and is a Board Member of Association for Children with Disability(ACD) and has recently been appointed to the Tasmanian Carer Advisory Council.
