Finding Out Your Child Has Asperger’s Syndrome

As is the case for many families, the walk my husband and I took to score a diagnosis for our son, Caleb, was long and winding. It began with a few noticed “quirks” around the age of two-and-a-half and finally ended at the age of six when we got our answer: Caleb has Asperger’s Syndrome (AS).

While our journey to find out “what” ended with a diagnosis, another expedition lay ahead – one that will last a lifetime as my husband and I continually work to understand our son. In this article I will discuss three important first steps for parents who have just received an Asperger’s diagnosis for their child. These steps will be a platform for your own voyage into parenting a child with AS.

Step One: Get to Know Asperger’s

The term Asperger’s Syndrome is not well known to the average American. This is partly because it is a “new” disorder, first recognized by the American Psychological Association in 1994. It is also because of people’s affinity for referring to the syndrome as high-functioning autism rather than its given name. No matter the reason for its relative obscurity, the first step in view AS and how it affects your child is to know the formal definition.

This step may seem a bit trivial – especially since you’ve already received a formal diagnosis from a professional – but understanding AS on a clinical basis can be of great assistance in your personal studies and in your attempts to relay your child’s behaviors and needs to the outside world.

According to the Diagnotic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; Copyright 1994, American Psychiatric Association), Asperger’s Syndrome is one of five pervasive developmental disorders, which also include Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Rett’s Disorder, and Childhood Disintegrative Disorder (CDD).

The DSM-IV classifies Asperger’s Syndrome as impairment in social interaction; restricted repetitive and stereotyped patterns of behaviors, interests, and activities; and impairment in social, occupational, or other areas of functioning.

An important part of the AS diagnosis is the lack of clinically-significant delays in language and cognitive development as well as the development of age-appropriate self-help skills and environmental curiosity. The lack of delay in these areas is noteworthy because it is a key factor in separating Asperger’s from autism. It’s also the reason that many children with AS are prone to misdiagnosis, often being diagnosed as having Attention Deficit Disorder (ADD) or Obsessive-Compulsive Disorder (OCD) or other neurological conditions before being properly diagnosed with AS.

Further Notes: Under the DSM-IV diagnosis, a child with AS shows impairment in at least two areas of social interaction, including the use of nonverbal behaviors; developing appropriate peer relationships; seeking to share enjoyment, interests, or achievements with others; and/or reciprocating socially or emotionally. Impairment in nonverbal behaviors is often seen as a lack of eye contact from the Aspergian, but can also be manifested as ineptitude with facial expressions and body postures and gestures.

Also shown in the DSM-IV, restricted repetitive and stereotyped patterns of behaviors, interests, and activities are shown in a preoccupation with one or more pattern of interest that is abnormal in intensity or focus; inflexibility with routines or rituals; repetitive motor mannerisms; and/or persistent preoccupation with parts of objects.

Step Two: Read

Once you are familiar with the clinical definition of Asperger Syndrome, you can inaugurate reading about the manifestations of the disorder. There are several great resources available, some written by professionals, others written by parents, and others still written by Aspergians themselves.

In my studies, I’ve found The OASIS Guide to Asperger Syndrome Completely Revised and Updated (Romanowski Bashe and Kirby; Copyright 2005, PAR Bookworks Ltd., and Barbara Kirby) to be one of the best resources available. This extraordinary tool does an outstanding job of breaking down AS and teaching you how to work with your child in areas needed to relieve them live a full and successful life. The OASIS Guide helped me put a name to many of my son’s behaviors (i.e., echolalia, and sensory and auditory integration problems) and to better understand their physiological and psychological basis. I highly recommend that you start with a copy of the OASIS Guide and use it as a tool for identifying your child’s particular symptoms; from there, you can more accurately find texts that delve even further into your child’s specific needs.

When you pick up your own copy of the OASIS Guide, you will immediately note its length (some 450 pages of in-depth information about Asperger’s). While you are reading through all of this important information, you may also wait on from a few “quick tips” on how to best work with your child. For this, I recommend Parenting a Child with Asperger Syndrome (Boyd; Copyright 2003, Brenda Boyd). This book includes 200 tips and strategies ranging from things to do for yourself (“Tip #5 Be realistic about tackling problems”) to building self esteem in your AS child to dealing with difficult moments. The books language (it was published in the UK and includes spelling differences) can sometimes catch your see, but the tips are sound and work well.

When building your Asperger’s library, don’t overlook those books written by people with AS, as they are a terrific tool in understanding what your child is going through, and will often times benefit in your parenting decisions fair as much as the scientifically-based resources. I found Look Me in the Eye: My Life with Asperger’s (Robison; Copyright 2007, John Elder Robison) to be just such a book.

Step Three: Find Support and Stay Connected

Finding out that your child has Asperger’s Syndrome is a bit of an emotional rollercoaster, the high-point being that you’ve finally found an answer to your questions, and the low-point being the realization that your child will never fully outgrow their fresh behaviors (some of which can be a bit troubling).

It’s important that you put together a support system to attend you through the entire process, including the everyday struggles of living with AS. A significant fragment of this network will be at least one person who has a child with AS, because while family and friends can be a wonderful shoulder to cry on, they cannot provide you with the tools you need to proceed forward. When your child has a meltdown because it’s raining and he can’t ride his bike as planned, your own mother will be there to rub your back – but a mother who has experienced this same scenario can help you through the situation and find ways to avoid another meltdown in the future.

Also, you will want to keep up-to-date on the medical, educational, and even political developments related to Asperger’s, which are happening every day. You may find, for example, that fresh medical research leads you to a new physical therapy technique that proves useful for your child. Likewise, you may find that your residence is involved in developing a law to require insurance coverage for AS-related medical services, and that you can support that law by phoning a state legislature or signing a petition.

Some wonderful resources for finding support and staying connected are:

Autism Speaks (autismspeaks.org) looks at all autism spectrum disorders, including Asperger’s Syndrome, and is involved in science, awareness, advocacy, and family services.

OASIS @ MAAP (aspergerssyndrome.org); OASIS stands for Online Asperger Syndrome Information and Support, and was founded by Barbara Kirby, one of the authors of the afore-mentioned OASIS Guide. Along with articles and educational resources, the OASIS @ MAAP Web site includes a database of local, national, and international support groups.

US Autism & Asperger Association (usautism.org) was developed for autism and Asperger’s education, support, and solutions.

Finally, a quick search of the Internet will most likely come up with local or regional organizations in your area, such as the Asperger’s Association of New England (aane.org, located just outside Boston). Many such organizations offer classes and meetings for parents/families of people with Asperger’s as well as for Aspergians themselves, and also work to obtain community of help for both.

Sources:

American Psychiatric Association, psych.org

BehaveNet® Clinical Capsule™, behavenet.com

The OASIS Guide to Asperger Syndrome Completely Revised and Updated, Romanowski Bashe and Kirby; Copyright 2005, PAR Bookworks Ltd., and Barbara Kirby

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