The first time I met a parent who didn’t want to talk about her child’s autism was at Beth’s preschool. The parent had a child who was a year ahead of Beth in the 4-year-old classroom. Her child had some subtle and brief repetitive hand movements, seemed to zone out sometimes, and I noticed how he answered questions in a very factual way with memorized scripts. He didn’t need a full-time aid to go to school like my child did, but clearly he was on the spectrum and on the “high-functioning” end. So, I tried to talk to the mother. I opened up about my child’s autism and our home program and got back absolutely nothing in return. I was confused, but I still tried to talk to the mom as we waited in the hall to pick up our children. And then I just gave up because it was clear she didn’t want to acknowledge our children shared some similar traits, let alone use the “autism” word. This parent was part of the “I don’t want my kid labeled” crowd.
Fast forward to the end of the school year when I decided the therapy program we had wasn’t really working as I had hoped and we were Going It Alone (http://wp.me/p2OomI-3). We were at the end of the school year, I was about to say goodbye to her last therapist, and I was sitting watching my child struggle through the end of the year class production (songs, fingerplays, etc…all of which she could not do). At the end I could barely contain my tears of sorrow, and I look over at the mom of the boy who had autism and she didn’t want to admit it. She was high-fiving her husband and literally doing a fist pump. We locked eyes and she knew that while it was a great day for her because her child did well, it was not a great day for me. And then she looked away. I thought, good for you honey, you think you did something magical for your kid and you won some sort of game that he can pass? And, I admit, I thought, fuc* you. Thus began my struggle with the “high functioning” part of the spectrum.
For a long time I have struggled to accept that the high-functioning kids and my daughter really have the same condition. And I have had feelings of resentment and anger when some parents complain about their child’s problems, which quite frankly seemed minor compared to my child’s struggles. But I have been fortunate enough to spend time with parents of high-functioning kids and over time I have been able to gain empathy. Too advanced for the “autistic support” classrooms, the high-functioning kids are put with neurotypical children and somehow have to manage. I have personally witnessed high functioning kids trying desperately to interact with their neurotypical classmates, and I have seen them shunned by their peers because of their uniqueness. It is painful to watch, and I get where the parents are coming from now. So, I thought I had made significant strides towards acceptance of high-end of the spectrum. Until yesterday.
I was at the playground, helping my child stay alive (she likes to climb down parts of the play equipment that she should climb up and the last thing I need is a bad fall and an emergency room visit). I passed by a mom saying, “She has social issues and other issues but I don’t want her labeled. I mean, she will beat this thing, and then…” I got a flash of anger that took me back to the high-fiving “this is a game to win” mom back in Beth’s preschool. Here are thoughts that went through my head: Lady, you have no idea what a real diagnosis is, what autism is, this is not a MF game, your kid doesn’t have anything or else it would be obvious, and on and on. And then I took a deep breath. There are kids with high-functioning autism that really need help, so why am I so angry? What is the real issue here?
And then it hit me. For a mom to not want her kid labeled with autism means she does not accept my child. It means that autism is such a horrible thing to her that she would never want to even fathom giving her child such a label. Ouch, that hurts…it cuts me really deep. The mom’s inability to accept the autism label triggered an anger in me that is below the surface waiting to come out. The anger was too strong and out of proportion with the situation, which can mean only one thing in autism land. Grief of course (http://www.abilitypath.org/areas-of-development/delays–special-needs/states-of-grief.html). This is my issue, I own it, and I need to work through it. But at the same time, is it okay to say, “I don’t want my kid labeled” and treat autism like a game to beat instead of saying “My child has some challenges, but I don’t think it goes to the level of needing a diagnosis.” From my point of view, the former is discriminatory and it is hurtful. I work very hard to understand the high-functioning end of the spectrum and to squash down my own jealousy and resentment, so I expect that parents of kids on the high-functioning end should work to be respectful of my child who works very hard every day to make small gains, who could not pass in a typical class by any stretch of the imagination, and who most definitely has autism.