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].

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

  1. Somebody should orobably point out that the notion that Elliot Rodger was autistic (spectrum, Asperger’s, what have you) has been debunked – thr very idea that a loner brimming with misogynistic hate and anger was probably autistic, among his family and the therapist who got it wrong, seems to have a lot to do with inaccurate stereotypes. i know Rodger is not the focua here, just wanted to flesh that out since you were just talking about the media there.
    thanks for a gteat article!

    • acatalacosta says:

      Thank you and you make a great point. Hearing Rodger described as “suffering from Asperger’s” on the news the night after this verbal attack by the family member infuriated me even further and it is why I mention it in the post. That total lack of understanding of autistic folks is, in and of itself, why it is a big deal to be open about being on the spectrum.

  2. Thank you for this and the previous post. More than anyone else I follow online, yours is an eloquent and practical voice for adults on the autism spectrum. My 28 year old son is beginning to advocate for himself and his challenge is not just finding the words but getting ahead of the scariness of disclosure. I know he’ll find strength in your words to find his own.

    You’ve made me realize that a lack of neurodiverse leadership in the social service agencies who support adults on the autism spectrum to find meaningful employment creates a neurotypical influence that “We know what’s best” in terms of how disclosure should be handled with prospective employers. That needs to change. I’m better equipped as a parent advocate because of what you’ve written.

    • acatalacosta says:

      Thank you for your kind words Kathy. It was clear to me early on that not only does the provider system lack neuro diverse leadership, it is filled too many people in leadership positions drawing their power from assuming they are the experts and speaking for us. These are not easy systems to change in any context. When you disclose, you are in conflict with theses systems and that is hard and scary. It takes time. I took baby steps at 28; time and practice coupled with love and support works wonders!

  3. Your observations and insights are critical if a community conversation is to take place. I can’t thank you enough for being farther along this journey so that folks coming up behind you can be guided by your wise words. As a parent, I’ve spent 10 years feeling like there was no one in authority speaking for my son and others his age. (I wish you lived in my neighborhood. 🙂 )

  4. Thank you for being openly disabled n a disability-related field. You are a good example for younger people who want to do something similar.

    • acatalacosta says:

      Thank you for your kind words Larkin. Being in the NT world is difficult for us and we need constant courage. I have absolute faith in the courage and beauty of young neurodiverse people.

  5. Great article. I will be coming back to read more of your work.

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