Adult Autism and Program Leadership: Yes, It’s a Big Deal.

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

The dust has begun to settle a little bit from a recent incident at an IEP meeting where a student’s family member attacked my ability to direct the ACAT transition program based on my autism. This is the original post and a fantastic response from Sonia Boué. My executive director, board of directors and the school district officials have treated this incident with the seriousness it deserves and I am going to trust the process for now as it moves toward a resolution.

A person involved recently told me that they had noticed how “comfortable” I seemed discussing my autism with the families of students, but they had not understood why it was a “big deal” until this incident. I appreciated these comments because they seem to hint at a recognition of the complexity of the very personal and delicate decision to disclose. But there is more to it than just that, and yes, it is a “big deal”.

I try hard to appear comfortable when I discuss my neurology openly with strangers. Appearing comfortable is practiced. Publicly disclosing either my autism or dyslexia always feels scary. It is not comfortable for me unless I am discussing it with other neurodiverse people. It is however extremely important for me to openly discuss it. It is a big deal that there are too few neurodiverse people in leadership positions in special education and there are far too many people who call themselves “experts” speaking about our neurology, which they clearly know little about. I’ve sat through too many IEP meetings listening to these “experts” get it insultingly wrong.

The day after the family member attacked me; I turned on the evening news and saw mass murderer, Elliot Rodger described first and foremost as having “Suffered from Asperger’s”. This of course is the prevailing view of intellectual and developmental disability in our society; burdensome, tragic, even dangerous. These views negatively affect each and every program participant we are meant to serve. Our ableist society fails to honestly understand neurological differences or to presume our competence. And it fails to acknowledge the existence of the negative neuro-normative constructs which permeate our special education system or how damaging and unsafe those constructs are. For me, being open about my neurology means speaking up to counter the overwhelming amount of misinformation which exists about our neurodiversity; even though that leaves me personally vulnerable.

I believe many special education professionals and caregivers have a firm intellectual and empathetic understanding of neurodiverse experiences. However my understanding is actual and visceral. My experience is lived, constant and valuable. The education and provider systems tend to focus on deficits and can overlook, or fail to even understand in the first place, the incredible ways in which neurodiverse individuals adapt to living in an often unfriendly neurotypical world. As much as anything, my role as an openly neurodiverse program director is to bear witness to astonishing ways our program participants adapt, grow and succeed;  and to bear witness as well to the struggles and pure originality to each individual life; this recognition is indeed a big deal at the deepest, living and breathing level of every neurodiverse individual.

Autism and my specific neurological wiring shapes and colors my life experiences. Growing up and living in a neuro-normative world has often been isolating and traumatic; my difference has been shamed. But it is just these kinds experiences which connect me to our program participants in a profound, intuitive and meaningful way. These experiences are the force which drives me to create programs which honor and respect the unique lives and voices of intellectually and developmentally disabled adults. And yes, this is for me, for us, a very big deal.

[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

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