Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism

We were reviewing her old goals and some of the new testing that the school had been doing with her. Then the moment came when we had to start new IEP goals.

I JUST HAD AN OUT-OF-BODY EXPERIENCE AND THE WHOLE THING FELT SURREAL.One of the million (maybe it was 10 but it felt like a million people) school people in the room said, “We are officially changing her diagnosis on her IEP to autism,” and that was my last clear memory. I just had an out-of-body experience and the whole thing felt surreal. I lost it and cried.

I would go easier on myself if I were an ordinary parent who had no prior understanding about children with disabilities. But the thing is, I had already been working hard as a disability advocate! I specialize in educating communities about young Black children with disabilities and de-stigmatizing disabilities with communities and families.

I had already had my breakdown. Seriously, my daughter had been receiving early intervention services since she was 2 years old! I had already been through the struggle to get her the early interventions and services she needed in school and at home. I had even completed a year-long intensive policy training to educate parents about federal and state legal protections for children with disabilities, and how to advocate for disability services, not just for their own children, but for all children with disabilities. I am now creating an organization specifically to help Black families advocate for their children with disabilities.

All that work represents almost four years of me researching, participating, fighting, learning and advocating for the rights of Black disabled children to full inclusion and to be treated as whole people.

I thought all that work meant that I was “better” now. I was supposed to be “over it.” I was supposed to be ready to accept my child with disabilities for exactly who she is. And, still, on that November day last fall, while sitting in the room with all the different educators, doctors and specialists, when I was faced with the words, “high-functioning autism and Aspergers,” I lost it.

My husband had to take over the talking. The room was spinning and I couldn’t focus on anything but the word “autism.” So, after the second hour, I asked to reschedule.

I definitely felt like I had failed as a parent and was a fraud as a disability advocate. I was supposed to be thinking about my daughter’s strengths and realizing autism is just one part of who she is. I definitely was not supposed to be sobbing and completely disassociating in a meeting.

I WAS NOT EMOTIONALLY OR MENTALLY IN A PLACE TO HAVE ANY REAL CONVERSATION ABOUT MY DAUGHTER’S NEEDS.The one thing I did right, was realize I was not emotionally or mentally in a place to have any real conversation about my daughter’s needs. So I asked for another meeting.

Then I went home and continued to handle things the wrong way.

I am most ashamed that I knew in my mind “the best way to handle a child’s autism diagnosis” and, with my own daughter, I still did everything “wrong.” Here’s what I did:

  1. I cried with anger.
  2. I got scared that her life was ruined. I feared she would never have real friendships or be able to have a real job or a real family.
  3. I labeled her and referred to her as “my autistic daughter” instead of using her name.
  4. I told her her brain was different from the rest of her family and friends! Then, I begin to ask her questions about “her different brain” with no context or developmentally appropriate guidelines. (As a side note, let me mention that there is an appalling shortage of books about autism for Black parents and children.)
  5. I treated her like she was broken and needed me to “fix” her.
  6. I made it about me instead of her.