In the current move towards recognition of neurodiversity, diagnosis can almost be seen as a dirty word.
Why put a label on something that is simply an inherent part of someone? Should we also carry verification of our extrovert/introvert status, or perhaps of our IQ/EQ?
Why should there be such emphasis placed on this piece of paper stamped with the word ‘autism’?
Could there possibly be a positive aspect to the label or is it simply a stamp which the person is then almost branded with.
I have been absorbed by this question numerous times over my career, but had always come to the same conclusion, diagnosis is a double-edged sword. It is not something that anyone actively seeks without cause, however, without a diagnosis, public access to services is impossible. Not difficult, impossible. So, for families in many countries, the diagnostic process is a necessity, no question. But what if you are not relying on public services? What if you have the means to fund private therapy, is the diagnosis still a necessity at that point?
I have encountered families who have made the decision not to assess, but rather to assist their child to alleviate difficulties and promote their strengths. Without the diagnostic report, are professionals working blind? Can you assist the individual without that baseline measure?
The answer to that is simple, yes, of course we can. We look beyond a label and see a child, or adult, and identify ways in which we can increase skills and decrease difficulties.
At an autism seminar in Armagh, Northern Ireland, some years ago, this hypothesis was debated at length by the keynote speaker. He mused that diagnosis should not dictate treatment but rather the difficulties experienced by the individual. He said that instead of applying blanket autism interventions, we should see the individual, and treat their individual needs.
This was not the first time I had encountered this train of thought, but it did really stay with me. I had previously worked in an ABA (Applied Behaviour Analysis) school, and the consultant attached to the school frequently said that we were not here to treat autism, but rather to treat the individual. I understood what he meant then, but ABA was the only option, so when discussed outside of the confines of an ABA setting, more treatment avenues are opened, and a more holistic approach is achievable.
The diagnosis can often blind professionals into tunnel vision strategies, without wiggle room for expansion of approaches. In this respect the diagnosis can be a hindrance.
“…interventions are now vastly different on the whole than those of the 60’s, 70’s, 80’s and 90’s.”
There are many adults, diagnosed in their youth, who now write about their experiences of interventions as children. They actively campaign to acknowledge neurodiversity and bring a halt to said interventions. While I can completely understand their frustration and anger, I have to argue that interventions are now vastly different on the whole than those of the 60’s, 70’s, 80’s and 90’s.
Interventions were rooted in a medical or deficit model, and as such, focus was placed on the child, and the problems that needed to be “fixed”. No cognisance was payed to the environment around the child, the role others around them played in their development, and the quality of life of the individual.
Over the past twenty years we have seen a huge shift towards a holistic approach to intervention with person centred planning prioritised. Now I can almost hear you say, in what magical land is this holistic intervention approach available?
Unfortunately our support services in this country are somewhat of a lottery, and the quality of intervention available differs from county to county, and perhaps even from town to town. However, the fact remains that this is the model that we aspire to, regardless of funding available. I wonder if the adults of tomorrow would view that type of intervention as negatively, only time will tell.
Watching a recent documentary on BBC, Chris Packham: Asperger’s and Me, I was struck by one particular comment. Chris was only diagnosed in his forties and was contemplating the effect that intervention could have made to his life. He said “I’ve had to spend my life coming up with ways of coping with this condition by rigorously controlling my environment“. He was living withdrawn from the world in a quiet woods and spent his days with his dog. He had not been to a party in 10 years and had no desire to ever attend one again. Socialising is so uncomfortable for him, that he has actively withdrawn. If Chris had been diagnosed at a young age and experienced holistic interventions cognisant of his needs, with quality of life at the core of the planning, would he have spent so many years struggling for control, or would he still desire isolation? Would diagnosis and recognition have made an impact?
At another autism seminar a number of years ago, I had the pleasure to meet David Jordan, a lecturer of geology in DCU and graduate of UCD. He spoke about his experience of autism, and his diagnosis in his twenties. He spoke about never understanding social interaction, and how a field trip with a fellow student in his early college years was to change this. His friend taught him the art of conversation in a direct fashion and facilitated growth in his social interaction with this “intervention“. He spoke of how, on his eventual diagnosis, the realisation of why he had been socially reclusive had struck him.
With his diagnosis, came comprehension, acceptance of himself and a community to identify with. With this comprehension, he was driven to facilitate social interaction for other individuals with Asperger’s, and his “Aspie meet ups” were born. He presented with passion and confidence, and chatted with fellow presenters, eagerly entertaining us with stories of his past and present interests. I cannot help but think, knowing what I know about his life pre-diagnosis, that this would not have happened without the comprehension which his diagnosis brought. His diagnosis appeared to have enriched his quality of life no end.
I have encountered children who have had their diagnosis removed following intervention, and this always puzzled me. If a diagnosis is made, and we know that autism is an intrinsic part of the individual, how can we then remove it? Akin to painting a car a new colour, if the surface is scratched, the colour still remains. In the years that follow, new difficulties may present and without support, the individual may struggle to comprehend a way through.
“The word “recovery” makes me cringe”
The word “recovery” makes me cringe, but I know that many people speak of their child’s “recovery” from autism. A short term change, does not equate to a long term transformation into a different mind or altered being.
By putting an emphasis on recovery, we lose the individual, and all the unique perspective they can offer.
The emphasis needs to be placed on promotion of skills, alleviation of difficulties and quality of life.
“At the end of the day, disability is socially constructed”
Temple Grandin has offered so much insight into the world of autism, and her talks are not only fascinating but inspiring. One of her most famous quotes is “different not less“, and this is quoted so often in relation to neurodiversity. However, one of my favourite quotes is “If you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social yak yaks“.
Difference needs to be celebrated, and we need to push society to value difference and understand the ways in which the difference affects communication, sensory input and output, and social interaction, no matter how mild or debilitating.
At the end of the day, disability is socially constructed, and we have a responsibility to create an inclusive society for not only this generation, but for our children, their children and every generation to come.
Diagnosis can facilitate understanding, but we also need to be more cognisant of individual needs and simple acceptance of difference, regardless of pieces of paper, labels or diagnosis. Diagnosis should not define, but rather offer opportunity for growth and development.
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