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

Mar 5, 2019 12:00:00 AM


November 6, 2018, is the day my daughter was officially diagnosed with autism. That’s the day my world collapsed. For the first hour of her three-hour IEP meeting, I was doing OK. 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. 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. [pullquote position="right"]I just had an out-of-body experience and the whole thing felt surreal.[/pullquote] 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. The one thing I did right, was realize [pullquote]I was not emotionally or mentally in a place to have any real conversation about my daughter’s needs.[/pullquote] 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.

It Took Time for Me To Realize How Unprepared I Felt About Autism

After three months of time to reflect, I realized my inappropriate responses were coming from shock and feeling very unprepared. Learning about the differences between how “ neurotypical” and “ neurodiverse” people perceive the world and interact with it reminded me of the challenges of getting to know people cross-culturally. To me it feels like I did a transracial adoption and I know nothing about the child’s culture. It was like I thought I was adopting a Black child and got a Russian or Korean child instead! I was overwhelmed by how much I needed to learn about autism, in order to make sure my daughter knows, loves and is proud of who she is, even though she is different from her parents and sister. Like transracial adoptions, I wanted my daughter to be proud of who she is and I had no idea how to do that! I had so much to learn and I didn’t want her to suffer because of our lack of knowledge. I know, I know, giving your child love is important. We give her lots of love. But, like parents who adopt transracially, giving our kids love isn’t enough. I have to make sure she knows and is proud of who she is and that I know and surround her with all the support she needs. Which means being around people who aren’t me. And, I realized I didn’t know any of my daughter’s people. I didn’t know any people with autism. A few months into this journey, I would say I am better but still have a long way to go. I still am unable to talk to the school or our private doctor about her diagnosis. I have yet to enroll her in the supplemental therapies that she needs through our private insurance like occupational therapy, therapist, and speech therapy. I literally have not been able to return phone calls or send information needed to get my daughter services! And worse, I know better! Remember, I wrote a piece advising people on what to do in my situation! But I know I continue to struggle with deep sadness for my daughter, too.

There Is No Therapy To Outgrow Autism

I also had to acknowledge some mistaken beliefs I held. I believed that our experiences with early intervention had prepared me for whatever “special needs” my daughter would have. I also thought “special needs” and “early intervention” were the same for me emotionally as words like “disabled” and “autism.” They weren’t. I only recently even realized that in my heart I drew a distinction between terms like “special needs” and “early interventions” versus “disabled.” Having a child with “special needs” didn’t have the same emotional impact on me as having a child who is “autistic” or “disabled.” Learning that my 2-year-old daughter had a speech delay and sensory processing disorder did not seem as serious or as permanent as having a daughter with a disability like autism. Speech delay and sensory processing disorder was something she could, and would, outgrow. Thanks to speech therapy, my daughter’s speech has improved, but there isn’t a therapy for her to outgrow autism. I have been so emotionally overwhelmed that I have been paralyzed about getting my daughter the services she needs. Luckily, my husband and I put in a lot of work in the first four years of her life to get her services she needed, so my paralysis in moving forward isn’t damaging her. She is still receiving a lot of the necessary supports that we fought so hard to get her at school. [pullquote position="left"]The hard part isn’t with my daughter; it is with me.[/pullquote] I am trying to be kind to myself about my terrible reaction to her diagnosis. And, ironically, I think it makes me an even stronger advocate and support for Black parents and children with disabilities, because I am not perfect. Not even close! I’ve made mistakes and probably will continue to make mistakes. And I am committed to giving my child the best life possible, so I know I need to move past this, or learn to work in spite of my emotional feelings about her diagnosis, and work with my husband and providers, to be the best advocate my daughter needs. Now it is 2019 and it is time for me to move forward past my own sad feelings, and instead focus on healthy ways that I can help provide my daughter the best possible life.

ShaRhonda Knott-Dawson

ShaRhonda Knott-Dawson is the mother of two free-spirited, strong-willed girls and has a husband who should be appointed a saint for co-existing in the madness that is their life. She writes on politics, education, current events and social justice. She is also a taco enthusiast, a proud member of the Bey-hive, and truly believes that she will be receiving her letter from Hogwarts any day now.

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