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Facing Your Child's Autism Diagnosis

Autism diagnosis: a turning point

Facing Your Child's Autism Diagnosis

Getting an accurate autism diagnosis is a turning point. In practical terms, it means that you can stop wondering what's wrong and start learning everything you need to know about your child's condition. Instead of searching for a way to make sense of unexpected quirks and inexplicable behavior, you finally have an explanation.

It should be a relief. But it can come as a shock.

I'm no stranger to hardship. You don't go from being raised by a disabled grandmother and a night-shift janitor, to a Harvard Law School honors graduate who runs a successful law firm in LA, without sweat and tears. After coming so far, I thought I could handle anything. Then I had an autistic child.

When I first learned my son's diagnosis, I couldn't even say the word "autism" without breaking down in tears. For months, I had put off going to a specialist for a diagnosis, hoping that whatever was happening with Marty would simply go away.

If I hadn't already had two daughters, I might have managed to stay in denial a little longer. But Marty was my third child. His two older sisters had given me models of what normal development for a two-year-old looked like. At this age, both Morgan and Michael had been speaking in complete sentences. Morgan had even potty trained herself by then. One day, she had simply declared she was ready to move on to "big girl" pants and refused to wear diapers anymore. Her older sister, Michael, was asking so many questions at this age that we were sure she was destined to be an attorney like her mom and dad.

Kindhearted friends reassured me. Boys always talk later than girls. If Marty preferred to play by himself and hoard a collection of plastic spoons and straws, maybe he was just independent and inventive. How I wanted to believe them! But in my heart, I knew that none of their assurances could explain what was happening with my son.

The initial shock

When my husband, Ernest, and I finally met with Dr. Diane Henderson, a developmental pediatrician, she told us gently that she suspected Marty had autism. This was her compassionate way of easing the blow. She recommended that we get a second opinion, but we didn't need to. I knew her diagnosis was right. But hearing it was a shock. As she described the condition, I sat in stunned silence, with the word "autism" playing over and over in my head. Minutes later, when I touched my face, I found it was covered with tears. When we left her office, I drove to a nearby parking lot, stopped the car and wept.

I was so afraid for my son — not only for what he might go through, but for how other people might treat him. It took months of love and support from many family members before I could share the diagnosis with anyone else. Right-brained pragmatist that he is, Ernest kept saying, "You might as well tell people he has autism. If they can't accept Marty, they can say good-bye to the Martins. We're a package deal." He kept encouraging me to be more open about it, but I wasn't ready.

"There's no need to call it autism . . ." I told myself. After all, I could truthfully say he was still getting tested and the doctors weren't quite sure about the true nature of his condition. Somehow the vagueness seemed to leave more room for hope.

Most of all, I didn't want to risk the horrible possibility that someone would hear the word "autism" and assume that Marty was doomed.

Like many parents, I also felt a profound sense of loss. We had not lost Marty, the boy we all loved and adored, but so many wonderful things we had hoped would be a part of his experience — going to school with his sisters, playing sports, taking a girl to the prom, attending college, starting a career — had been swept away with a single word.

It was far better — even crucial — to have a diagnosis. But as the implications began to sink in, my fear and resistance were gradually replaced with grief.

A healthy sense of grief

Grief is the appropriate response to loss. It's the emotional suffering you feel when something or someone you love is taken away.

It is natural for parents to mourn the news of their child's incurable disorder and the loss of the child they expected. You may associate grief with the deaths of loved ones (and such a loss does often cause intense grief). But grief can accompany the loss of:

• relationships
• friendships
• health
• cherished dreams
• employment
• attachments
• financial stability
• security

Decades ago, Elisabeth Kübler-Ross, MD, identified the stages of grief in her famous book On Death and Dying. Others have built on her work to give us insight into the ways we respond to tragedies in our lives. In coping with the diagnosis of autism, parents may experience many of these stages, in any order. In fact, it's common to have good days and bad--moving back and forth between them--as we struggle toward acceptance.

Stage One: Shock, Denial, Isolation
"My child doesn't have autism. He's just different."

In this stage, we protect ourselves by using denial and isolation as a buffer, to keep us from being overwhelmed by the full extent of this new reality. It is a survival instinct — the equivalent of putting our arms up to cover our face when something rushes toward us too quickly. It allows us to modulate our exposure, so we can take it in at our own pace.

Stage Two: Awareness and Emotional Release
"Is this my fault? Did I do something to cause my child to have autism?"

When we feel safe enough to acknowledge the reality, our emotions take over. We can feel anger and guilt. We may try to deflect those feelings by blaming someone else or even bargaining with God in exchange for a different outcome.

Stage Three: Depression
"Nothing will ever be the same. The future is grim."

Ultimately, we are left to face the reality. Our denial and isolation have bought us a little time to get used to the idea. We've had a chance to vent, but then a feeling of pain and hopelessness can sweep over us.

Stage Four: Acceptance
"Autism is a challenge, but we can cope with it together."

In this stage, we come to terms with reality. Our acceptance gives us enough relief that we can start to engage in social activities again. We're able to talk about the situation without as much pain and find a way to feel hopeful for the future.

Acceptance is the goal, but each of these stages is perfectly normal and healthy.

The most damaging response is to suppress these feelings or hold on to the grief too long. When a parent pushes away any fear, frustration, anger or resentment he may be feeling, those emotions can break out in other ways. Anxiety attacks, insomnia, weight fluctuations and chronic depression can indicate that a parent has been overwhelmed and is not making a fluid progression through the stages of grief. Consultation with a therapist or medical professional can help get things back on track.

It's important to honor your genuine feelings, whatever they are, and not try to make them into something you think you ought to feel. Everyone comes to terms with this diagnosis in their own way. My husband cried with me in the parking lot after we heard Marty's diagnosis, but after that he never looked back. He was ready to move with all deliberate speed to learn about the therapies and treatments, find appropriate programs and wade right into the autism information maze. I needed more time than that. You may too. But the truth is, the longer you spend in guilt and self-pity, the longer you delay the ability to vigorously help your child.

How advocacy can help

Use Advocacy to Alleviate Denial
Advocacy for your child with autism can help you move past denial more quickly. Directing your energy toward an issue, rather than away from it, can be so empowering that it motivates you to do even more.

1. Talk to someone you trust about what you are observing in your child. Find someone who will not try to persuade you to take a particular action, but will simply listen.
2. Journal your observations. Review what you write three or four times a week.
3. Make yourself familiar with the medical literature on autism and its many causes and symptoms.
4. Attend a workshop or seminar on the topic. Getting more information will help you have a better understanding. Visit a preschool or classroom with typical children. Seeing other children who are comparable in age will help you have a frame of reference for your child's behavior.

Get in the habit of asking what you can do, instead of ruminating or dwelling on your sense of frustration, anxiety or uncertainty. One of the finest skills an advocate can develop is the ability to act effectively despite those feelings. Cultivate this skill and you will become a powerful advocate for your child. As you practice you will also move toward acceptance.