When your child is diagnosed

Diane Adreon, M.A.

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Autism is a scary word to many. When most people think of autism, they think of “classic autism” as portrayed in old movies and descriptions of children sitting alone in a corner rocking, and who frequently developed little language and had tremendous difficulty interacting with others and learning a wide range of skills.

The definition of autism has changed considerably and today the term covers a much broader group of individuals, including individuals with language and average to above-average intelligence. In the diagnostic manual used by doctors and psychologists in the United States, the Diagnostic and Statistical Manual of Mental Disorders-IV, Text Revision (DSM-IV, TR), what we often call autism spectrum disorders is technically under the umbrella diagnostic category of Pervasive Developmental Disorders (PDD).

As one might imagine, this is not a particular “popular” phrase either. However, it is an important phrase-because we need to recognize that an autism spectrum disorder significantly affects many aspects of functioning. The most common autistic spectrum disorders are Autistic Disorder (autism), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and Asperger’s Disorder. Sometimes doctors say that a child has PDD; however, PDD is not a specific diagnosis. In all likelihood it means that the doctor believes that the child has one of the pervasive developmental disorders.

Why Do Different Professionals Give My Child Different Labels?
It is common for parents to take their child to different professionals and receive different diagnoses. One doctor may say, “He doesn’t have autism. He has PDD-NOS.”

Another professional may say. It’s not autism or PDD-NOS, but rather – Asperger Syndrome.” There is little agreement among diagnosticians as to which label most appropriately describes a given child. So whether your child is technically diagnosed with Autistic Disorder, PDD-NOS, or Asperger’s Disorder (also often called Asperger Syndrome), it probably is not that important in terms of what you can do to help your child.

I Don’t Want Him Labeled
Receiving a diagnosis for their child can be upsetting to parents. However, learning that your child has an autism spectrum disorder (ASD) can be very helpful to you, your family, and your child. Many parents, who often have been searching for a long time to understand their child’s struggles, are relieved to finally have a diagnosis that makes sense.

Learning about ASD is the first step in helping you learn about your child and getting the necessary tools to serve as “conductor of you’re your child’s orchestra.’. It is through a partnership between parents and professionals that issues can be discussed from various viewpoints to help parents determine:

(1) What skills are most important for my child to work on? and

(2) What is the best use of our family’s’ financial and other resources (such as time) to help our child?

Another reason a label can be important is because it may allow you to access services. In some cases, children may be eligible for services if diagnosed with autism; but not if the diagnosis is PDD-NOS or Asperger’s Disorder. Because of these types of issues, it is a good idea for parents to keep all diagnostic records and then decide what would be useful in securing services for their child.

Areas of Impairment in ASD
In the United States, medical doctors and psychologists use the DSM- IV TR (Diagnostic & Statistical Manual of Mental Disorders-4th Edition, Text Revision) to classify developmental and psychiatric disorders. In the DSM-IV TR, individuals with ASD are described as having impairments in three primary areas: (a) social interaction; (b) communication; and (c) restricted range of interests, patterns, and behaviors.

Many children with ASD also have related difficulties. This often includes problems with attention, organization, emotional regulation, behavior, and motivation. Many children have intact or enhanced skills in certain areas, such as long-term rote memory and attention to details. Yet others have weaknesses in specific areas of learning. This might be in academic areas, such as reading comprehension, or in other areas of brain functioning, such as how quickly (or slowly) they process information.

Learning how your child functions across all of these areas can be very helpful in prioritizing goals and helping your child improve his skills.

“The Doctor Said My Child Is High Functioning. What does that mean?”
There is not a universally agreed-upon definition of high-functioning autism. In all likelihood, diagnostician says your child is “high functioning,” he or she means that your child has a significant amount of language and does not have mental retardation, along with the ASD. (An IQ of 70 or above is considered to be above the cut-off for mental retardation.)

Having a higher IQ probably means that your child has the potential to learn more skills than a child with a lower IQ, so it’s a good overall indicator that your child has the potential to improve significantly. The child who has developed considerably language is able to communicate his wants and needs more effectively than a child with less language. In most cases, the child with more language is also better able to understand what others are trying to communicate. This is also very important for lifelong success and well-being.

Unfortunately, having an autism spectrum disorder is not a mild problem. By definition, to be diagnosed with an ASD the child has to demonstrate significant impairment in functioning such as language, social skills, etc.

However, we have improved our ability to diagnose ASDs earlier and are rapidly expanding our knowledge of strategies that can help children with high-functioning autism. In all likelihood, this means that the outcomes for individuals with high-functioning autism are improving all the time.

What Are Some of the First Steps I Can Take to Help my Child?
*Take care of yourself and your relationships. By addressing your own emotional well-being and nurturing the important relationships in your life, you will assist your family in becoming more resilient. *Seek professional help, whether through faceto-face support groups, on-line support groups, or seeing a counselor or therapist. *Learn about ASD. There’s a tremendous amount of information available. It is difficult, however, to determine what information is most reputable. Seek out professionals you can trust to provide you with information as objectively as possible.

Diane Adreon, M.A. is Associate Director University of Miami/Nova Southeastern University Center for Autism & Related Disabilities and co-author of Asperger Syndrome and Adolescence: Practical Solutions for School Success

Courtesy of APPC