This week, I am doing a three-part series on the subject of autism. In preparation, I have spent hours talking to experts, interviewing families, and reading the latest research on this subject. I’ve learned a lot. I’ve learned that autism is on the rise, and I’ve learned that we really don’t know why. I’ve learned that to some it is not PC to say “a child with autism”, and to others it is even more offensive to say “an autistic child”. I’ve learned that there are many treatment options available, but I’ve also learned that there is no silver bullet – no magic pill to make it going away.

Most importantly, I have learned that autism is a disorder of social relatedness. Ironically, an autistic child’s inability to socially connect effects the entire family’s ability to relate socially with the larger community. It is a disorder that is often packaged with isolation and discrimination.

As a child, I remember feeling very uncomfortable when Mrs. Martin’s class entered the lunchroom. Her students sat in the cafeteria at their “special” table with their “special” teacher. They looked different than the rest of us, and frankly, they acted a little weird. Even as a second grader, I knew they were different and almost instinctively, I wanted to stay clear.

Without question, children with autism and other disabilities are discriminated among their peers. Even with well-intentioned mainstreaming initiatives, these children remain socially isolated. However, it’s not only the children that are rejected, the parents also feel the impact of the social shun.

This form of discrimination exists for the same reason that all discrimination exists – fear. People fear what is different. It is as if the dissimilarity may be contagious and if they get to close, they may catch the affliction. As a result, they reject it or even worse, pretend it doesn’t exist. After all, it’s not polite to stare.

Like most minority populations, families with children with autism have to work harder to gain acceptance. Pamela Brice, mother of Chase, a seventeen-year-old boy living with Aspergers, shares some of her struggles raising a child that was different.

“At first we did not know the extent of his diagnosis. By the time he was in second grade, he was no longer invited to birthday parties or after school get-togethers. I felt so much heartache for my son. But, I also felt that I was not included in the group. I felt that people were judging me because my child was different. Even my best friend felt that I was unable to control my child.”

This isolation can cause depression and hardship within the family. As in the case of the Brice family, Chase’s behavior was unpredictable and challenging. Not wanting to make others uncomfortable or call attention to her or her son, Pamela would not reach out and attempt to include her family in community events. Instead, she would spend most of her time with her son, trying to manage his disability while offering some relief from the isolation he was experiencing at school. Pamela was lonely and depressed.

In addition, Pamela had to fight the school administration for additional services to assist her child. When he was finally accurately diagnosed, Chase was able to receive more appropriate assistance. However, it wasn’t until the Brice family had two children without disabilities that they felt more connected to the community.

Now that her son is seventeen and considering college, there are some things that she admits she would have done differently. She has advice for other families living with children with disabilities.

“I would tell people the diagnosis early on and explain it. When they are little, let people know what is going on. When other people hear and understand the diagnosis, it makes them feel more comfortable. They no longer assume that we are letting him jump on the couch all day.”

She goes on to say how important it is for the children as well as the adults to socialize. “Arrange play dates and let them know what is going on. It is good for other kids to also understand that children are different. You are not doing your child or yourself any favors by becoming isolated.”

Today, there are many services and resources available to families of autistic children. Pamela emphasizes the importance of getting plugged in early and often. Reaching out to other families struggling with autism is key for treatment and harmony within the home.

Pamela reminds families that having a child with autism is nothing to be ashamed of. “Hiding your child’s disabilities doesn’t hide it – everyone sees it. There is not point in pretending it doesn’t exist.” She encourages families to get connected early and be open with the diagnosis. The key to managing this form of discrimination is combating the ignorance with understanding. Being open with the diagnosis will eliminate the shame and allow for acceptance, tolerance and support to emerge.

Available Books:

Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability (Paperback)
by Robert A. Naseef (Author)

The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs (Hardcover)
by Denise Brodey (Author)

Strange Son (Hardcover)
by Portia Iversen (Author)