“I Heard a Rumor That You Have Asperger’s. Are You Even Capable of Running This Program?” An Encounter with Ableism.

I’m not naive. I understand the personal risk that comes from being open about my autism. I thought about it for a long time before I decided to make my diagnoses public. I understand that being openly autistic makes me vulnerable to ignorance and even cruelty.

I direct an Adult Transition Program called ACAT, which I designed, and an Adult Day Program called ACT. I have worked with transition age intellectually and developmentally disabled adults for over 10 years. I am all too familiar with negative attitudes society holds toward our population; our capabilities are undervalued; our voices are ignored and dismissed; our lives are viewed as burdensome and tragic. I choose to be open about my autism, to be an advocate, because I believe that it is absolutely essential for me to challenge these negative attitudes which are not only wrong, but harmful as well.

Apparently not everyone got the word. Yesterday at an IEP meeting, the sister of one of our students was ranting on about her displeasure with the program. She leaned across the table, raised her voice to me and spat out “I heard rumors that you have Asperger’s; are you even capable of running this program!?” I was outraged. Then she repeated, “I heard rumors that you have Asperger’s!” Anger rushed through me and my access to words locked up. I think I told her that it was none of her business and if she insisted along this line, the IEP meeting was over. My staff, Eric worked to diffuse and redirect the conversation. I was grateful for him. I know he was angry too. The rest of the table said nothing. Maybe they were stunned that a family member of an intellectually disabled young man would question my capability based on my disability. Maybe they were filled with shame. Maybe they were indifferent. I don’t know. I do know I felt unsafe.

As I walked home later that evening with thousands of thoughts and emotion racing around my head, something occurred to me; something important. It is easy and justifiable to focus anger on the ignorance of the family member and her nakedly cruel ableist words. Not only is her brother disabled, but she also works as a special education speech specialist. I have a profound sense of disgust for her. But I thought of the others at the table, all neurotypical and their collective silence.

Being open and public about your neurodiversity takes courage and certainly more courage then the others at the IEP table showed. I’m reminded how “experts” try to speak for us all the time, but when it come time for them to stand up for us, they fall silent. If my capabilities had been questioned because of my gender or my sexuality would there still be silence?

The best part of being an Autistic Advocate is presenting the positive side of neurodiversity, but there is another side to this as well, a scary side, which must be acknowledged. So as my hurt and anger slowly dissipate, I publicly wear my wounds. I don’t want people to speak for me, but I wonder, when this happens next time to any of us, who will stand up.

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[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].

 

26 Responses to “I Heard a Rumor That You Have Asperger’s. Are You Even Capable of Running This Program?” An Encounter with Ableism.

  1. PK says:

    I won’t speak for you, but I WILL speak with you. Thank you for your hard work, courage, and dedication to making the world a better place for our family and friends.

  2. sonnolenta says:

    This is an excellent post. I’ve been struggling lately with some mixed feelings after being criticized about being public about being autistic in relation to my career. Your writing just helped me to feel more in control of owning my decision to BE public about it. I feel that it is important for me, in the same way it is for you– to be an advocate and help to change perceptions. It is scary to go public. Thank you for helping me.

    • acatalacosta says:

      For the most part the experience has been positive, but yesterday was a stark reminder of the personal, emotional and even professional danger of being open about your neurodiversity. It takes a ton of courage to do what you do. Every autistic blogger, every autistic voice brings me strength and hope.

  3. raspycricket says:

    Thank you for speaking up about this – I know this was an all around dreadful experience for you, but change does not come from people keeping silent about injustice. My heart goes out to you and to the student whose family member holds such ableist attitudes.

  4. anonymous says:

    Been there.

    Which is why this comment is anonymous.

    I had to make the decision to go someplace else and not disclose this time.

    Because you’re right. Our special education community is frighteningly uncomfortable about supporting disability among our ranks.

    • acatalacosta says:

      It took me nearly a year to decide disclose and public about autism. I knew there was the possibility of this. In fact in the back of my mind I thought of this family specifically. t is important for me that the special education systems confronts this, whatever the eventual outcome. But I completely respect and support each individual’s choice to disclose. I’m really sorry that you went through this as well. It’s pretty painful. Thank you for taking the time to comment.

  5. Rosanna says:

    Yes, it is very sad and I can relate. I am a 41 year old woman diagnosed with Aspergers last year at age 40. I’m also the parent of a young child with autism. I naively shared my Aspergers diagnosis with other autism parents and was immediately given the cold shoulder by many, and leaders of various support groups and organizations are often condescending or dismissive. So, really, I didn’t accomplish anything by “coming out.”

    • acatalacosta says:

      I’m sorry to hear about your experiences. It is so frustrating. I draw a great deal of strength from the autism community online, but it can be kind of scary out in the world. I’m on your side.

    • PK says:

      I’m sorry , Rosanna. As a parent of a cold on the spectrum, I really don’t understand this attitude that some autism parents have. I want you to know that you are appreciated. If you are looking for supportive online communities, visit Adiaryofamom.wordpress.com. As they are wonderful. Also, parenting autistic children with love and acceptance on Facebook is strongly autistic safe. Sending warm thoughts your way.

    • outoutout says:

      Another Autistic parent here, and unfortunately I can relate, too. I no longer associate with the local Autism groups because they’ve made it clear there’s no place for someone like me in their little ‘club’.
      If I may say so, I don’t think your ‘coming out’ was meaningless. In a way, people like us are the trailblazers, making inroads so that the next generation of ASD folks (including our kids) will have an easier time. One of the most important things we can do is show them we’re not ashamed of who we are. Anyone who rejects us for our diagnosis was never an ally to begin with.

  6. V Martin says:

    I’m sorry that you had this terrible experience and it’s scary that someone who has that kind of job would have that kind of thinking and would attack you with such words.

    Just some thoughts about your colleagues: in an organization where the relationships are very formal, it is generally expected that a boss will defend an employee that is attacked, because he is accountable for the work performance of its team. When it’s the boss that is attacked, employees can feel uncertain if they are at liberty to intervene and who’s responsibility it is (unless it’s a physical attack where the men will be expected to take the lead in defending the attacked person).

    I have been in situations where a big boss (or a customer in an other instance) made a sexually demeaning comment toward a woman colleague. When it was the team leader that was the victim of the comment, nobody said anything. I didn’t meant that we agreed, we were stunned, uncertain what to do toward the person making the comment that was in authority and all felt victims of that remark.

    I don’t know your team, so I can only speculate that they found the comment of the lady ridiculous, that they were profoundly uncomfortable in the situation, uncertain what to do and they were wishing that the meeting would close as fast as possible.

    • acatalacosta says:

      I think you make a good point. My staff member who was there redirected the conversation away after some stunned silence. I don’t think anyone at that table knew how to deal with that situation. I hope to get us all to think about this, because the silence for whatever reason was as unacceptable as the ableist comments of the sister. I want us all to learn from this and maybe we can make the world a little better for the next generation of neurodiverse people.

    • Âûnty Jack says:

      I am an Assistant Principal and also have an Autism dx. When I conduct meetings we a
      start with a statement about meeting protocols. In a situation like that, and it has happened to me too, I can reqest that the statement is rephrased according to the meeting norms. That gives others the permission to contributr towards a restorativve statement and clearly demonstrates the limits of professional discussion.

      • acatalacosta says:

        Thank you for your comment. The first thing I asked for in future meetings is a code of conduct. IEP meetings can be so emotional and having a clear set of expectations can help keep folks on task. I like the way you handle the situation. It is smart!

  7. Tamara says:

    Wow. The misdirected frustration of the sister is inappropriate at best, but totally inexcusable in her vitriolic comments. If she had stopped to think, she would agree that there is no one more qualified to run this program than you. But she didn’t think.

    I don’t mean to minimize your pain in any way, but I sat and thought for a while “what would I have said?” and words fall me. Had I been sitting at that table, I too may have been silent. Not because I didn’t want to have your back, but because I would have been so shocked by her comments. Because there is no rational response to her irrational remarks. And then, because sometimes it’s smarter to fight utter stupidity with silence than to try to reason with it.

    Keep doing what you’re doing, you rock. I feel sorry for her, because she’s . . . Just . . . wow.

  8. slugbugz says:

    I am sorry that this was hurtful and that you had to experience that. How wonderful for your students that you are able to share your experiences as a young person transitioning into the adult world. The students and their families are lucky to have you as an advocate.

  9. Jen says:

    I hope and pray that my 15-year-old son will be able to have whatever career he chooses and never feel threatened by the ignorance of others. I am grateful for your “blazing the trail” for him and so many others.

    • acatalacosta says:

      Thank you Jen. There are many strong Autistic voices out there who are confronting the dominate ableist narrative. It is your son’s right to be in the world exactly as he is and to be proud of who he is.

  10. Thank you so much for sharing.
    This rings true to my experience, as a lot of the worst ableism I’ve experienced has been from those whose jobs were based on helping me and people like me. The first time I was ever called “a SPED” it was by my friend’s mom, who was a special education aide. Another time, I was told by a high school special education teacher that the colleges I was applying to may be “too good for me. ” I think there’s a myth that autistic people aren’t capable of adult jobs, and it’s really, really harmful.

  11. Caelie says:

    Please keep speaking up — the overwhelming majority of folks on the spectrum are lovely, non-violent, non-danger-to-others people. The world NEEDS to know/see/accept this!

    • acatalacosta says:

      Thank you Caelie. You are right most of the folks I know on the spectrum are sweet and gentle people. And the person who attacked me was NT. We will raise our voices and drown out those who frame our lives as burdensome,tragic, dangerous, or incapable.

  12. Emma says:

    Hi, I have noticed a distinct decrease in my employability since becoming open about my Aspergers, which I find odd as I work with spectrum kids in school, something I am privileged to know a lot about as I am both a very experienced teacher (over 15 years) and on the spectrum myself. When I do staff training, teachers are amazed by how different the experience of school can be for kids on the spectrum from those who are not, they gain this understanding because I can share things from my life and the lives of kids I have worked with from an insider perspective. Aspergers may be all pervasive but it is why I am excellent at my chosen career, I am good because of not in spite of. I am sad that you experienced such ignorance and bigotry, it never ceases to amaze me how some people deny the potential and skills in any people who are different. Congrats on your program and I hope you continue to be able to make a huge difference in the lives of your students and day program clients for a long time.

    • acatalacosta says:

      Thank you for you comments Emma. What a great gift to have your voice, understanding and perspective. The special education and service provider systems need more neurodiverse folks in leadership positions. For me, autism is difficult because it constantly butts up against neuro-normative walls of misunderstanding and indifference. I agree with you, Asperger’s is why I’m good at this job.

  13. Pingback: Adult Autism and Program Leadership: Yes, It’s a Big Deal. | ACAT: Ala Costa Adult Transition Program

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