On Desperation

Filed Under (Activism) by Estee on 06-03-2009

It is no secret that I am going through a separation. In going through the process, I get to meet with more people who impute their thoughts and meaning about what it must be like to have an autistic child. I hear a lot of emapthy, sometimes sympathy, and it starts to make me uncomfortable. I mean, when Diane Sawyer interviewed Kristina Chew of Autism Vox and now Change.org, and said that joy is a way of masking sorrow, I was really upset with her.

We all have our own journey to take. In writing my book, I have to review old notes and diaries and come face-to-face with myself. I can see where the cracks may have begun to form in my life. If hindsight is 20/20, I can see clearly now.

There was definitely that “mama bear” in me — no one was going to discriminate against my child! Yet, there was also a great sense of isolation and aloneness in those early days. There was a great deal of misunderstanding. There was confusion on my part with the early messages about Adam’s autism in terms of how he played and what I should or should not be doing. There was a great deal of guilt and a heavy load of responsibility I felt upon me. In all of this confusion, I lost friends too. I don’t think they understood this journey I was on. When I became “Activist Mom,” I gained some friends, but also lost some and was called “too militant,” which only gave them greater reason to abandon me, instead of diggning deeper to discover what someone has to go through to become an activist. Activism does not have to be militant, so I want to reveal that it is disconcerting to hear the two as synonyms, and I think there is a huge gap in understanding the journey parents must go on that the “outside world” (meaning families with children without disabilities) simply do not understand.

As I look back on my early words when Adam was not quite two years old but just diagnosed, I was so distressed. I was turning 40 years old. I was being told that autism was “not a sprint but a marathon.” I had written that I felt like “a part of me had died.” I had written that I “envied other families with typical children who were able to talk to them easily about their experiences when Adam could not.” I was angry when people went up to Adam and gave me distressing looks or yelled in his face as if he could not hear them. I was pressured to accept the comparisons between an ADD child and an autistic child — and in many senses, I still think you cannot compare these experiences at all. People were trying hard to be my friend by making my family experience familiar through comparison. It’s an understandable thing to do because it is one’s segue to understanding and empathy. But really, there was no adequate comparison that could match my experience.

The truth of the matter is, I experienced the pain of having a child diagnosed with autism just as much as any other family. I have a written record of it on my desk right now. I can see how isolated I felt, how I didn’t get the support I really needed, and how I fought to stay afloat all by myself. There was no one out there to really support us without pitying us, and I resented that too. Pity was not going to get Adam included in the programs and schools he needed to be participating in.

Adam was my life buoy. Every time, even despite his anxiety issues and his cries, he smiled or made one small step forward, he pulled me back to him and to a new reality. I rebuilt my dreams and my expectations. Yes, I went through doubt and I walked through my own hell, but Adam pulled me out of it. My world shrank to Adam and I and then it exploded to a world of other friends — autistic people and other families — all thanks to Adam. It expanded to accept other people with disabilities in a way I had never done before. My world expanded so I could see things in an entirely different and new way. While I lost many friends, I also gained so many more. This is how life is supposed to work, I think. Life is meant to shatter expectations in order that we grow bigger and stronger and more open to many things.

Desperation morphs, you see. It is part of the journey. A valid part. And you just have to wade through it, just like I did then, and am doing now in the process of divorce. I now prefer to see it as “a part of me died” in order that I could become a more accepting and loving person. So, walk through hell with dignity and an open heart. I promise you will get through to the other side.


Post a comment

You must be logged in to post a comment.


About Me


I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.