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The Call to Advocacy for Your Child with Autism

Accepting your child's autism diagnosis

The Call to Advocacy for Your Child with Autism

Accepting that your child has autism takes courage and a strong dose of faith — the ability to believe that the four-year-old who is completely nonverbal today will one day learn to communicate.

Based on my personal and professional experience, I can tell you with certainty, you will be amazed at the progress your child makes. I have watched nonverbal children blossom into conversationalists and uncoordinated children participate in Olympic games. You must learn to walk a fine line, to be as realistic and as flexible as possible. Keep in mind that some of the greatest success stories in history took a lot longer than expected. Don't ever give up on your child. Don't be deterred for a minute if he is not acquiring a skill as quickly as you would hope. It's to be expected.

As a parent, you will gradually make the shift from accepting the diagnosis to "living with autism." This means being able to adjust to the child who refuses to get on the school bus; unclogging your sink ten times in one week after your child has stuffed it with every imaginable object, including small plastic toys; leaving your sister's wedding early because your child can't tolerate the noise from the band; and packing extra clothes for every outing because your child can't resist jumping into any water he sees.

The good news is that a child with autism is constantly changing. Many of their early behaviors evolve or disappear entirely as they receive interventions and the environment around them changes. Children with autism have many strengths and unique characteristics. Parents must learn to identify and cultivate those traits in their children, while guarding their exceptional vulnerabilities. This challenging task is best addressed by mastering the skills of advocacy.

Becoming an advocate for your child

Becoming an advocate will never change the condition, but it can utterly change your perspective and that of everyone you come in contact with. As you gradually release the dreams you had for your child before the diagnosis, you will move through the difficult stages of grief toward the calm of acceptance. Then you will be ready to take on the new role that this diagnosis asks of you.

"We need you," Jim Sinclair said in his plea to parents. "Your world is not very open to us, and we won't make it without your strong support. . . . Take a look at your autistic child again and . . . [t]hink to yourself:

"?This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind. . . . It needs someone to care for it, to teach it, to interpret and to advocate for it. And . . . that job is mine if I want it.'"

As the mother of an autistic child, I know how much this new job asks of a parent. I have felt for myself what a blow this diagnosis can be. Despite my deep, unqualified love for my son, it has literally forced me to find a new strength inside.

Learning how to advocate for my son has been the biggest challenge of my life. But now Marty is ten years old. In the years since his diagnosis, I've spoken with hundreds of parents who have children with special needs. It's been a wonderful opportunity for me to help. Along the way, I've become a recognized expert myself.

As a result of standing up for my own child and standing up for the children of my clients, I know exactly what it takes. I can clearly describe the road ahead — pointing out many of the pitfalls and showing you how to avoid them, explaining definitively what works and what doesn't.

Because I was so frustrated myself at the lack of clear information when I needed it most, you will be given concrete tools for navigating the laws, institutions and decision makers that so greatly affect your child's life. In the very next chapter, "Advocacy 101," you'll be introduced to the skills you need to become a powerful advocate for your child.

If I can move from anguish to advocacy, so can you. It isn't easy, but I'm going to show you how. Now let's roll up our sleeves and get down to business.

Where to begin as an advocate

Putting It into Action

1. Start a journal to track all of the milestones your child reaches. This will make you more aware of his progress and help you gain a better appreciation for the wonderful growth that is possible for him.
2. Write down your feelings in relation to having a child with autism. Don't be afraid to acknowledge feelings of sadness, hopelessness and even despair. But if you find that your journal entries are primarily focused on feelings of sorrow, consider talking with someone you trust, such as a friend, minister or a professional counselor.
3. Write a list of all of the wonderful things you love about your child, such as her smile, her pretty white teeth, her curly hair and her dimples. Review this list when you are feeling sad. Simply reflecting on your child's positive attributes will induce a state of happiness.
4. Plan a family meeting with your immediate and close extended family members. Talk about the diagnosis and your feelings. This is a safe environment, and talking about what's going on with your child will help you begin to move from anguish to advocacy.
5. Imagine your own "nation," in the tradition of Laura Krueger Crawford. Define your own language and rituals. Make a game of it that the entire family can join in. Let siblings and other relatives take turns creating new words and activities that exist in the land of your family.