My Daughter's Autism Is Not a "Difference" — It's a Disability

And you shouldn't hate me for feeling that way.
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Publish date:
April 15, 2016
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Tags:
disabilities, autism, Spectrum, neurotypical privilege, autism awareness

April is Autism Awareness Month and as the mother of a child who is on the spectrum, my social media feed has recently been overrun with many perspectives about autism. The views range from what autism awareness means to why Autism Awareness Month either sucks or doesn't suck. There is, in my opinion, validity in many of these perspectives, and I do "light it up blue," because it's extremely important to talk about autism. This month is also an opportunity to talk about my experience raising a daughter on the spectrum.

Raising my daughter, who is now ten years old, and coming to terms with her diagnosis, has been an ongoing journey. It took years for me to understand and accept that her challenges may never resolve. I fully believed at the beginning that if we could just get her to talk, autism wouldn't be a problem for her.

We waited three long years from the date of her diagnosis to hear her utter her first word. When that finally happened, I really felt like things would start to get better. I don't mean to diminish the fact that my daughter was finally able to repeat words; it was and is a huge accomplishment for her. She worked and worked to gain that skill and she continues to build upon it. However, four years later, it is still a great challenge for her to use language meaningfully. Once in a while, she will make a spontaneous utterance that gives us an indication of what she wants, but, truthfully, those instances are few and far between.

We have tried to use augmentative devices to help her with her spontaneous communication, but she hasn't taken to them at all. One of the hardest things for me, as her mother, is to see her struggle through a meltdown and not be able to tell me what it is that she wants or what is bothering her. I know she is very intelligent. I have never doubted that for a minute. It's one of the many reasons that I have never become complacent about our journey.

She works so hard. Her teachers and therapists work so hard. We, as a family, try so hard. She has made great progress. That is undeniable. I am overjoyed when I think of how far she has come. At one point, she couldn't even bear to put shoes on or tie her hair. She has gotten over a lot of her sensory issues and that is tremendous. I am constantly and consistently amazed at all she can do. She can tie her shoes, she can eat with a fork, and she can roller skate. She is learning to dress herself and she is so good at cleaning up her toys. She can read simple books. She can do lots of things, things that she couldn't do before, and things that I wasn't sure she would ever do.

As she has gotten older though, it is very hard to see children that are her age and see where they are in their development. To me, ten years old looks like my daughter. Even though my son is only three years older than his sister, I don't think of the way that he was at ten. Maybe part of me has forgotten, but maybe part of me is trying to protect myself from really seeing where my daughter would have been, had she been neurotypical.

A lot of people try to talk up the "snowflake" perspective when they talk about autism— "Celebrate difference, not disability!" — and I buy into that way of thinking, but not completely. It's very important to recognize that for many people on the spectrum, their difference is a disability.

Like I said before, I can only speak to my experience. In my opinion, my daughter's diagnosis is most certainly a disability. I hope, with all of my heart, that one day that she will be able to communicate with language and not just memorize rote answers or repeats words and phrases. I hope that one day she will live independently. I hope that she will be able to work and earn her own money.I hope that she will mature beyond the age of seven, which is about where she is developmentally. All that I do with her is in furtherance of these goals.

I hope for all of these things. I also know that we can work towards these things, tirelessly, but we may never achieve them.

With each passing day, I feel my age more and more. I have become keenly aware that I'm not that young anymore.I have a friend whose daughter also has ASD and she always says, "I wish I could live just one day longer than her." I understand that completely. See, it's possible for parents like us to love our children, and believe in them, fiercely, and still feel that this diagnosis is a disability.

I think it's important to realize that while ASD children are on a difficult journey, their families are on a difficult journey themselves. I don't think any parent is fully prepared to expect that they will have a child with an illness or a disability. I know that I used to dream of what my little girl would be when she grew up, and believe me when I say that those dreams were pretty lofty. I have always loved my daughter as she is. I don't mourn for who she isn't. However, it has been a journey of acceptance for me. I have had to accept that because of her diagnosis, she does have limitations right now, and my job is to help her work towards getting past those limitations. Her challenges are real and they are hard and frightening. I am even more aware of her gender as she gets older. It is hard enough to be a woman in this world, but to be a woman with no voice? That thought alone shakes me to my very core.

When I wrote about the Wakefield film and Robert De Niro, the comments I received were mostly brutal. I was called a bad mother. People said they felt sorry for my daughter for having a mother like me. But why am I a bad mom? Because I worry about my daughter? Because I wish that she didn't have the challenges that she has because she's autistic? Because I wish that I knew why she has this diagnosis in the first place?

Because I wish there were a cure?

Walk a day in our shoes. When parents like me are told that we are wrong for viewing our children's diagnosis as a disability, it diminishes our journey, as a family. It is not easy coming to terms with the limitations and challenges that our children have. It is not easy finding the right therapies and teachers to help with those challenges as best as all of us can. It is not easy seeing our children struggle. When parents like me are finally able to accept that autism isn't just a difference, we are able to embrace the fact that we are going to have to work really hard to help our kids as much as we can.

Most mothers who have daughters worry about their safety. I not only worry about my daughter's safety, I worry that she has no voice to tell me that something's wrong. Tell me that I'm crazy for hoping that she'll be okay after her father and I aren't here. Promise me that money can solve everything. Promise me that my son won't resent me and his sister when she becomes his responsibility. Tell me that I'm wrong for worrying that despite my best efforts to get her all the help that I can, both now and in the future, that her challenges won't always get in her way.

Then tell me I'm a bad mom for thinking that her autism is a disability.