Experts by training and experts by experience

Ruth Connolly considers the difference in views between those who advocate for accepting people with autism for who they are, and those experts who advocate for interventions that seek to change people on the autism spectrum.

0
1224
  • I think of autism not as a disorder, but as a different way of being in the world.
  • I devoured books written by Donna Williams, Temple Grandin, Stephen Shore, Judy Endow, Catherine Alvarez and others. I learned about sensory processing difficulties, thinking in pictures, movement differences, paralysing anxieties, sensory stimulation, and the joy of total immersion in obsessional interests.
  • Many individuals have developed mental difficulties, such as anxiety disorders, resulting from their attempts to cope with the stresses of trying to fit in.
  • These days in Ireland we are reaping the benefits of organisations such as ASIAM who promote autism awareness.
  • We need to focus on strengths, as opposed to deficits.
  • Fundamentally, we must sit with the belief that there is no one correct approach. There is only the approach that is correct for a particular individual, at a given point in time and for a specific set of needs.

Many years ago, when I was a young Clinical Psychologist developing a professional interest in serving the autism community, one of the best pieces of advice that I received from my clinical supervisor was to think of autism not as a disorder, but as a different way of being in the world. I was advised to learn about autism, not just from an academic perspective, but also from autistic individuals who had written about their first-hand experiences. I devoured books written by Donna Williams, Temple Grandin, Stephen Shore, Judy Endow, Catherine Alvarez and others. I learned about sensory processing difficulties, thinking in pictures, movement differences, paralysing anxieties, the comforting and stress-reducing nature of sensory stimulation, and the joy of total immersion in obsessional interests. Most of all, I learned about a neurotypical world that was poorly adapted to meet the sensory and social needs of this population.

When I went on to work as part of an early intervention team, much of my clinical work involved providing diagnostic assessments for young children with autism. I went on to recommend these first-person narratives from autistic writers to the parents of the children whom I had diagnosed. I was hoping to promote an understanding and acceptance of autistic culture, and a perspective that interventions and supports should focus on adapting environments and developing coping strategies as opposed to an emphasis on ‘fixing’ the child.

These days, much of my work is with autistic individuals with comorbid intellectual disabilities and behaviours that society deems as challenging. Many of these individuals have developed mental difficulties, such as anxiety disorders, resulting from their attempts to cope with the stresses of trying to fit into social and physical environments that are not sufficiently flexible to meet their needs. My work typically involves setting up residential support arrangements with a team of staff who are sufficiently autism-aware and autism-accepting to allow each individual to achieve their best possible life.

While the theory and practice of positive behaviour support guides much of our work, we have learned that most successful outcomes are achieved when we can figure out how each individual’s autism affects their way of being in the world, and then we can adapt the social and physical environment accordingly.

From my early readings of books by autistic writers, I was struck by the heterogeneity of autism. Stephen Shore famously stated, “If you’ve met one person with autism, you’ve met one person with autism”. Through my professional training in clinical psychology, I learned the importance of focusing my assessments and interventions on the very specific strengths and needs of the individual in front of me.

These days in Ireland we are reaping the benefits of organisations such as ASIAM who promote autism awareness and acceptance by providing training and education sessions, as well as conferences, predominated by first-person accounts of what it is like to be autistic and how educational and occupational environments can be adapted to improve inclusion.

Since the broadening of the diagnostic criteria for autism and the inclusion of Asperger’s syndrome in DSM IV, there has been a significant and exponential increase in the numbers of individuals who have been diagnosed and who identify as being autistic. With DSM 5, even though the diagnosis of Asperger’s syndrome has been subsumed into the broader autism diagnosis, albeit with differing level of severity, this trend has continued. The most recent estimated prevalence rates of autism being reported by the CDC in the US are 1 in 68 children.

What I have noted of late is a growing movement on social media platforms, and elsewhere, of autistic individuals who are uniting in their efforts to inform and educate the neurotypical population. Media personalities such as the naturalist, Chris Packham, who identifies as having Asperger’s Syndrome, have emphasised the positive aspects of autism while expressing sincere concern about the potential impact of evidence-based autism interventions (e.g. discrete trial instruction based on applied behaviour analysis).

Of particular note is a growing movement on social media platforms, including twitter, tumblr and Facebook amongst others, led by individuals, some professionally-diagnosed and others self-diagnosed as autistic, who use the twitter hashtag “actually autistic” to signify that the post is written by an autistic person. While it is always helpful to read the views and opinions of autistic individuals, this collective sometimes purports to represent the entire autism community and often advances a radically anti-professional stance.

For parents and caregivers of individuals with autism seeking information, there can seem to be a great dichotomy of views and opinions, with academics and clinical professionals taking one perspective and autistic adults taking a contrary stance. Each side is strong in their convictions.

As Damien Milton, an autistic academic and father of an autistic son eloquently writes, “consensus in this field is about as likely as having a sustained political consensus between all political interest groups, from fascists to communists. The reason such a consensus is not possible, is because the debates are largely theoretical and ideological. Thus, there will not be any agreement regarding how to measure progress, or even if one can. The most important message here for parents and practitioners working with autistic children, is that there are no easy answers!”

The dialectic here, as I see it, is between acceptance and change. We need to accept each individual’s autism as an integral part of their being and acting in the world. We need to see the world from the autistic perspective. We need to focus on strengths, as opposed to deficits. We need to focus our efforts on changing social and physical environments to reduce stressors, as opposed to trying to change the autistic individual to ‘fit in’ to faulty environments.

We must find ways to better integrate the learning from experts by experience with that of experts by training.

Fundamentally, we must sit with the belief that there is no one correct approach. There is only the approach that is correct for a particular individual, at a given point in time and for a specific set of needs.

Recommended Reading

Des Roches Rosa, S., Byde Myers, L.D., Willingham, E. & Greenburg, C. Eds.(2011). Thinking Person’s Guide to Autism. Redwood, CA, Myers-Rosa Foundation.

Milton, Damien. (2014). So what exactly are autism interventions intervening with? Good Autism Practice, Vol. 15(2): 6-14.

Grandin, Temple. Thinking in Pictures. (2006). London, Bloomsbury.

Williams, Donna. (1996). Exposure Anxiety: The Invisible Cage of Involuntary Self Protection Responses. London, Jessica Kingsley.

Ruth ConnollyRuth Connolly is Principal Clinical Psychologist Manager with the Muiríosa Foundation based at Moore Abbey in Monasterevin, Co. Kildare. The Muiríosa Foundation is committed to designing individualised residential support arrangements for individuals with intellectual disability and autism who may also present with behaviours of concern and mental health diagnoses. Ruth is a committee member of the Psychological Society of Ireland’s Autistic Spectrum Disorder Special Interest Group.

LEAVE A REPLY

Please enter your comment!
Please enter your name here