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Tuesday, January 22, 2013

Should I Get A Diagnosis For My Child With Developmental Delays?

From The Friendship Circle Blog

By Karen Wang
January 17, 2013

Do you know someone who isn’t sure whether or not to pursue a medical diagnosis for a developmentally delayed son or daughter?

According to the Centers for Disease Control, most children with autism are diagnosed after age 4. Certain other developmental and learning disabilities are usually not diagnosed until a child enters elementary school. These facts are puzzling, since it is well-established that early intervention leads to better outcomes for children with special needs.

But there are many reasons why parents and physicians choose to delay diagnosis, even when a young child is delayed and has difficulty adapting to everyday life.

Six reasons why parents will wait to have a child diagnosed:

1.) Normal range of behavior.
  • The reported symptoms may fit within the normal range of behavior and skills for that age.
2.) “Wait and see.”
  • I often heard this from my son’s pediatrician – he kept advising us to come back in 3 to 6 months to see if my son had made any progress. It was not a helpful approach in my older son’s case. However, my younger son was a late talker who began speaking in full sentences spontaneously at age 31 months.
3.) Insurance won’t cover the diagnosis or therapy.
  • In many states, insurance companies are not required to cover therapy for any type of developmental delay. A diagnosis like autism may actually prevent certain services from being covered. But in some states, a diagnosis will open the door to coverage of more services or home therapy programs.
4.) The child’s behavior may make an accurate diagnosis impossible.
  • This was the problem I had with my older son. It was clear from infancy that he had special needs, but he had panic attacks whenever we entered anything that looked like a doctor’s office. He also had a panic attack at his first evaluation for services in the public school system. It’s not possible to diagnose or evaluate a screaming child.
5.) “A diagnosis won’t change anything.”
  • It’s true that a diagnosis does not change who the person is. In cases of mild developmental delays, a child may not even be eligible for special services.
6.) “I don’t want her to be labeled.”
  • What most parents mean by this is that they do not want a child to be subject to the prejudices that are often held against people with special needs. But the fact is that a person doesn’t need a label to be subject to those prejudices – unexplained behaviors may have the same effect.

So when is the right time to identify a child’s disability?

1.) You’ve waited long enough.
  • You’ve already waited for a year, made some modifications at home, and haven’t seen a significant improvement in the areas that are of concern to you.
2.) You’re not sure what your child’s special needs are.
  • There are many different symptoms that don’t add up. In this situation, it is usually a good idea to see a developmental pediatrician, who can connect the dots between physical symptoms and behavioral patterns. Different disabilities require different treatments – for example, an anxiety disorder will not be treated the same as cerebral palsy, even though there is some overlap in the symptoms.
3.) You may be unaware of an underlying problem.
  • Some parents take a child to a developmental pediatrician for behavioral issues, and learn that the child has a nutritional deficiency or mild muscle weakness on one side of the body. Sometimes a child is unable to verbalize pain, which leads to unusual behaviors or an inability to participate in activities.
4.) Your child may become eligible for an intensive early intervention program.
  • My husband and I were wary of having our son diagnosed with autism, because we knew that his therapy would not be covered by insurance with that diagnosis. However, as soon as we brought his medical diagnostic report to the school district’s attention, our son was admitted to a specialized autism program. In that first year after his diagnosis, the school district provided over $100,000 worth of services to him, at no cost to us. Our son immediately began to make developmental progress.
5.) Your child’s special needs are affecting family relationships and friendships.
  • Caregiving is a stressful occupation. One thing that I appreciated greatly after my son’s diagnosis was the moral support of his team of teachers and therapists – they were always there for me when I had questions or needed guidance in my son’s day-to-day care.
  • An undiagnosed or untreated disability may also make it more difficult for a child to form friendships. A diagnosis makes it possible for a child’s peers to be educated about special needs and thus widen the family’s circle of support.
6.) Decisions must be made based on the child’s needs, not on the parent’s fears.
  • I’m not going to lie: the process of diagnosis is frightening. I vividly recall walking back to my car after one of my son’s appointments, feeling like I’d been punched hard in the gut. I could barely maintain my composure in front of my son that day. What kept me standing that day was the thought that I was the key to unlocking my son’s potential. I needed more information to help him – I needed an accurate medical diagnosis. I faced my own fears so that we could grow strong together.

About Karen Wang

Karen Wang is a Friendship Circle parent. She is a contributing author to the anthology My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities.

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