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In Her Own Words: Living With Autism
As told to Debra Wood, RN
Sandra first suspected something was wrong with her son Mike when he was 18 months old. A year later, she learned that he had autism. The New Jersey mom and health-care professional shares her story.
What was your first sign that something was wrong? What symptoms did you notice?
I became concerned about his language development. He was not saying many words. The pediatrician said not to worry, since Mike was a preemie and a boy. And boys talk later. At the 2-year milestone visit, I brought it up again and received the same response. Then the caregivers at day care began pointing out behavior issues that concerned them. For instance, he would refuse to sit in a circle with the other children or attend to what was going on.
What was the diagnosis experience like?
It was a difficult process. The pediatrician finally sent Mike for a hearing evaluation. That came back normal. Then we went to a speech pathologist who said, "This child needs to see a neurologist." The pediatrician still told me everything was fine and refused the referral. But I insisted. The neurologist talked to my husband and I, then looked at my son for two minutes and said, "He has autism." The doctor told us to expect Mike to need special education for the rest of his life. He gave us a list of five organizations to call if we had any questions.
What was your initial and then longer-term reaction to the diagnosis?
I was devastated. My heart was shattered. I'd describe it as deep despair, only with the hope you can do something and it will get better. I don't know that time fixes that. But I've gotten used to feeling these feelings. They don't go away. We've gone through all the emotions-acceptance, denial, grief. You constantly circle through them. Losses occur over and over again, every time the child doesn't get to do the things his peers are doing.
How do you manage autism?
There is no treatment. Mike stayed in day care until he was three. He now attends a school that has special classes for neurologically impaired children. He receives speech therapy to help with expressive language. And he gets oral motor therapy to increase muscle strength and improve his ability to form words. He tries to tell me words and attempts to communicate. But his efforts are thwarted, because his mouth doesn't say what his brain wants it to say. We work on the pragmatic use of language, language for a purpose, rather than repeating words. And my son takes medications to control some of the symptoms.
Did you have to make any lifestyle or dietary changes in response to autism?
Yes. All children like routines and want to know what to expect. This need is heightened in autism. These children don't understand the social cues that go into a situation. So routine and structure help a lot. We stick to routines for going to bed, getting ready for school, coming home. Everything. When we go less structured, like on vacation, we bring along a picture schedule. It may have a photo of a park and a pool. That way he knows we are going to a park and then to swim. We work on transitioning from one activity to another. For instance, when he has to go to physical therapy, I tell him we will leave in one minute, to give him time to finish what he is doing. It takes a consistent effort. If we say something, we have to follow through and do something about it. There has to be a consequence, if he doesn't do what is asked. I took behavioral therapy training at the Center for Outreach and Services for the Autism Community (COSAC). I've learned to find things that motivate him and catch him being good. I reward the smallest behaviors to reinforce them.
Did you seek any type of emotional support?
Shortly after the diagnosis, I went for personal counseling through my company's employee assistance program. It was good to talk to somebody about it. You want them to fix it, but that doesn't happen. I went again about a year later when I was having difficulty with the behaviors. The counselor reassured me but couldn't help me feel better. It is what it is. I've attended support groups. They help some. And I learn from talking with other parents.
Does autism have any impact on your family?
It has a tremendous impact. We constantly struggle with the disability. It affects our family's ability to communicate and socialize, and to do the things typical families do so freely.
What advice would you give to anyone living with autism?
Understand that every child is different. And do what makes sense for you and your child. You need to get connected, like at COSAC, even if you don't have time to volunteer.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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