Autism is one of five pervasive developmental disorders listed in the Diagnostic and Statistical Manual of Mental Disorders. It is characterized by significant impairments in communication and socialization, coupled with restricted and repetitive interests and activities. According to the Autism Society of Canada, it is estimated that one in 150 children in Canada is born with autism. Although there is no cure, intensive behavior-based interventions have been effective in reducing symptoms for many such children.
The Trauma and Attachment Report recently spoke with a parent of a child with autism and discussed her experience of raising a child with special needs.
Q: Can you describe the moment you were told your child has autism?
A: There were certain behaviors that haunted me, and I had suspected since he was about 18-20 months old that something wasn’t right, as there was a loss of language. He was diagnosed formally at 26 months and still, even though I had my suspicions, the first time I heard the autism diagnosis it was devastating. I felt it changed everything. As I heard the words, it was like hearing a loved one had died. The moment was foggy and the sound muffled. I felt like I was falling.
Q: How has having a child with autism affected relationships in your life with family and friends?
A: It has shown me the truth about myself and those around me. In a marriage, having an autistic child brings additional stresses to the equation. Having a child with a disability is like having a newborn for a very long time. With family I have had mixed experiences. My in-laws from India were in denial for a long time, they told us that there was nothing wrong with him and he would be fine. In regard to siblings, there have been some that have been extremely supportive and it has brought us closer together as parents. My older sister and I were not that close before, and she is now my biggest supporter.
Like many parents, I became reclusive right after the diagnosis. I think it was difficult to be around my friends’ typically developing children. I think some friends also didn’t know how to respond. It is a very painful process and I think it is different for everyone. I have had neighbours befriend me, I think, out of curiosity regarding my child. They asked a ton of questions to start, and stared at him constantly, as if he was an animal in a zoo. Then over a period of a few weeks they began avoiding me.
Q: What kind of coping strategies have you used and what things have helped the most?
A: Talking with other parents has been helpful. No matter how close a person is with their friends and family, no one really understands what this is like more than another parent going through the same thing. Joining a support group was the most helpful. I also see my therapist a few times a year. He specializes in working with families that have children with disabilities. For myself, I also enjoy hiking, backpacking in nature, and painting. I think it was important not to let go of, or stop doing the things that made me happy. I use these things as an outlet.
Q: Can you describe the greatest challenges you have faced since your child was diagnosed with autism?
A: I think the hardest challenge is knowing what direction to take in his treatment. I have always felt this pressure on my shoulders, in deciding what direction to go with academics, behavioral and biomedical interventions. The other challenge is this feeling of helplessness that occurs at times. My child used to have night terrors and I couldn’t comfort him. He didn’t even know I was there. I still have a difficult time in public settings at times because of his lack of awareness. When my son is acting strangely or has an incident in public, I get looks or comments from people. I feel as if I am being judged as a bad mom, but they have no idea that I work so much harder than average mothers.
Q: What have you gained from having a child with autism?
A: One of the biggest things that my son has given me is the opportunity to meet some of the most amazing people in our communities, especially the therapists that work with our children. I became a parent support group moderator. One of the things I do is regularly schedule events and adapt screenings for our children. It has been wonderful giving back to the community and helping other parents through the journey. Without my son’s disability I never would have had that opportunity.
Q: What have you had to give up, or let go of?
A: In the beginning, when you first find out that you have a child with a disability, you mourn the dreams you had for your child. You don’t know what your future or your child’s future is going to be like. You start from scratch, and over time, little by little, you get those dreams back again. My marriage had some problems before our son was diagnosed with autism. I think the additional stress of him being diagnosed brought it all to the surface. When I decided to leave my husband, I knew I was giving up the dream of having a typical child: I thought that no man would marry me again, and then I would be too old to have a child. It was the hardest thing to let go of. I love my little boy, but motherhood was not what I dreamed or expected it would be. I am happy to say that although I had given up that dream, it has come back into my life. I met an amazing man this past year, we are getting married in the fall and will be trying to have a baby immediately.
Q: How do you think your experiences compare to those of other parents who have a child with autism?
A: I learned very early not to compare when it came to this area of my life. It only brings pain to either yourself or another parent. Sometimes we are down a few notches, sometime up a few. Sometimes our kid will be the one singing right along in the school performance, and sometimes it will be our kid licking his hand with everyone watching. I think everyone’s experience is different, just as every child with autism is different.
Q: How have your feelings changed or evolved over time?
A: I think it was hardest in the beginning. Parents go through the same emotional process as dealing with death: denial, negotiating, anger, acceptance, and depression. There are times when you jump back and forth between them. I was surprised to experience envy during the process. I used to walk my dog at night in the neighborhood, walk past the homes of the other families, and count to myself the number of healthy children they had in each. Now I believe that everyone in life will experience their own challenges, just at different times and in different areas. Perhaps this was my test.
Q: How has hope been helpful to you?
A: I feel that it has been hope that has kept me from falling into a depression; I have been depressed before. It is very easy to lose hope by feeling overwhelmed by the different interventions that are available, or when you try a certain therapy and find that it doesn’t help. I recall in the beginning feeling overwhelmed and not knowing how I could help my child. But when I saw a therapist working with my son and getting him to talk, I thought, “I can do that!” It got me off my butt, literally. I had been staying up late at night watching old black and white movies. I started doing the same thing as the therapist. And that renewed my hope.
– Crystal Slanzi, Contributing Writer