'The Language Of Identity' in Autism Matters...(or) Autism Culture 101
THE LANGUAGE OF IDENTITY, OR “I AM NOT AN AUTISM PARENT”
Before reading the rest of my commentary, my suggestion is to first click on the link and read the author's very worthwhile and important comments; an 'autistic parent' who 'parents' her children who differently have their own individual characteristics reflecting the autism spectrum.
Now that you've had the chance to read what Michelle has to say....
From her excellent commentary I think, maybe, the most important and valuable includes....
"I am not an “autism parent”. I am a parent.
I do not parent autism. I parent my children.
Some of my children have sensory sensitivities, some have sleep challenges, some have difficulty in social situations, some need support with looking after themselves, some need help with emotional regulation. I meet each of their individual needs to the best of my ability, no matter what they are.
I am not a “parent with autism”. I am an autistic parent. I don’t carry autism with me as an added extra. It is part of who I am. I experience sensory, communication, sleep and executive function challenges.
I am strong, persistent, and compassionate. Being autistic adds strength to the way I parent."
Clinicians, BCBAs, psychologists, teachers et al must similarly come to understand and recognize that they do not and cannot ‘treat autism;’ that there are not and that they do not have ANY magical interventions that will make the autism go away or, in any way, become ‘cured.’ A child who has been correctly diagnosed as autistic will remain autistic.
And that's OK.
We should not be 'combating autism' since that infers being at 'war' with people; with individuality and with families. Autism is not a disease. Autism is not a mental health or neurological illness but a different way of being. For many, autism is differently functional. Others may may need additional and differently targeted support/instruction; environmental intervention and individualized understanding.
Despite having provided clinical services for going on 40 years - which means I've seen a great many children and adults on the autism spectrum (among many others) - each person and family I see is new. While I can tell you things I've done, I can't ever tell you what I am going to do until I've met and gotten to know an individual and their world. In fact, I think this is a very reason I'm still so engaged.
Those who immediately offer 'complex' explanations for basic child related behavior before or after barely knowing the child but based only on an awareness that a given child is 'autistic' should instantly raise multiple red flags.
Besides violating the basic behavioral analytic principle of Parsimony, such explanations are simultaneously most often wrong and reiterations of autism stereotypes but with a clinical facade. Any intervention; behavioral, instructional, 'sensory' or otherwise which continues interminably not only Is. Not. Working....but has more likely become directly counterproductive for and interfering to the individual.
I think it very important to absolutely understand and integrate the view and unique understanding offered in Michelle's writing; “Some of my children have sensory sensitivities, some have sleep challenges, some have difficulty in social situations, some need support with looking after themselves, some need help with emotional regulation. I meet each of their individual needs to the best of my ability, no matter what they are...,"
Clinical, educational and related resources who continue to hold onto and pursue the ‘politically correct’ but individually and therapeutically invalid side of the autism diagnosis; those who think they can ‘fix’ autism with pseudosciences and other magic connected more to autism stereotypes than either clinical efficacy or, most importantly, real people with autism – those who won’t (can't) understand what this author is saying – would probably be much more helpful by referring/guiding children and families who do need additional supports and more individualized services somewhere else.