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Autism Heroes

Autism Heroes

Portraits of Families Meeting the Challenge

Barbara Firestone, Ph.D.
Forewords by Teddi Cole and Gary Cole and Catherine Lord, Ph.D.
Photographs by Joe Buissink

Hardback: £29.99 / $39.95

2007, 244mm x 279mm / 9.5in x 11in, 240pp
ISBN: 978-1-84310-837-5, BIC 2: VFJD AJCP

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Dignity
When her son Nick was diagnosed with high functioning autism, Pam Bentson knew that she would have to work hard to help him develop a sense of dignity in his life. In the third grade, for the first time, he looked at me and said, "Mom, I'm different." He had never said that before and it was hard for her to hear. She said to him, "I love you Nick. You are different. It is different for you, but that's okay, because I love you, and we will find the right place for you to fit." As Pam told me this story there were tears in her eyes.

I have met many families who have confronted numerous obstacles yet have found the pathways to dignity for their children. Parents with older children remember the misconceptions that prevailed for many years: the "Refrigerator Mom" theory or the idea that Raymond in Rain Man was the embodiment of what it meant to have autism. Can you imagine hearing this diagnosis and at the same time thinking that you as a parent were somehow responsible for your child's disability? Can you sense the frustration of finding very little reliable information about a subject of such importance? Can you feel the despair of the parents having such scant resources to rely upon while at the same time being told that the prognosis for your child was grim? Thankfully, the times are changing for this generation of children and for their families.

What does it mean to lead a dignified life? How do parents help their children navigate in a world that isn't always sensitive to individuals with differences? Families recount how insensitive, uninformed, and distancing the community can be. When children, who otherwise look normal, have disruptive or unusual behavioral problems in public, strangers can be very unforgiving. Frequently, onlookers attribute the child's behavioral problems to ineffective parenting or to the child being a "bad seed." They often stand to the side rather than help, their faces full of judgment rather than empathy. Some parents have told me that, although it's difficult for them to admit, they wished at times that if their child had to be disabled, that the disability had taken a more socially acceptable form. Some parents make the decision to fully participate in activities outside the home no matter what the cost; others modify what they will attempt; while others retreat, saying that it's easier to avoid being ostracized. And of late, parents are beginning to tell me that they sense a greater understanding in the community- a more "How can I help?" rather than "What kind of parent are you and what kind of child do you have?"

Lack of acceptance and tolerance by classmates and neighborhood peers can compound the isolation of already sensitive children. Rather than being a haven of learning and friendship, school can be a place of bullying, scapegoating, and despair for the child with ASDs. There are too many stories of the child who finds himself all alone or mercilessly taunted.

But there are also stories of the children who find acceptance and develop the skills to form positive social relationships in settings that are designed to meet their needs. One parent told me that one of the happiest days for them and their son was when he had "real" friends to invite to his bar mitzvah. This was in stark contrast to the past, when for birthday parties and other celebrations his parents would call upon their family and friends to send their children to fill in for the friends that their child simply didn't have.

The issues of dignity are larger than life when parents weigh the decision to disclose to their child that he or she has autism. They question whether this disclosure is helpful or harmful: is it a label that limits their child or a label that will enable them to better understand their differences? Will lack of disclosure help to protect their child from slings and arrows that could be aimed at them by uninformed or insensitive peers, family and friends? Many parents have made the decision to be public and this decision has opened up the pathway to dignity for many children.

Teddi Cole remembers this decision. "Now, we're okay with the diagnosis. When Mary was first diagnosed, people said to us, 'Don't use the A word.' But that's sort of treating it like the Scarlet Letter. It's not the Scarlet Letter. Gary and I made the decision early on; we've talked openly in our house about autism for as long as I can remember. Mary knows she has autism. She knows that she's had a harder time doing things socially than other kids. So we felt that to pretend, not to call it by its name, would in the long run be harder for her and harder for us."

Parents tell me that they work hard to try to understand their children's inner life and unique expression of life. They try to grasp how their children experience those close to them and the world around them. In so doing, they have achieved tremendous insights-it is very different from what they imagined in the beginning. Some parents try to connect with their child through their child's perspective; others work to help their child conform to the world as they know it; and others try to meet in the middle to find a place of dignity and acceptance for their child.

In this time of greater public awareness, barriers to dignity are beginning to be dismantled and bridges to public acceptance, understanding, and help are being built. The powerful stigma that for many decades has limited dignity for those with autism is beginning to recede. Now we are speaking more openly: there is no shame, there is nothing to hide. Dignity and difference are not incompatible.

All of us need feedback in our lives that tells us we are valued, that we are accepted and we are loved. Let us work to tear down the barriers to the dignity that these children and families deserve. It is an important movement that has been long overdue whose time has finally come.

Sample pages from Autism Heroes