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To Diagnose or Not to Diagnose?

There are two ways to study butterflies: chase them with nets and inspect their dead bodies, or sit quietly in a garden and watch them dance among the flowers. - NONGNUCH BASSHAM

This article is an excerpt from an article by Stine M. Levy, A FIRST-PERSON ACCOUNT OF THE QUANDARIES OF A PROFESSIONAL as found in “Focus on Autism and Other Developmental Disabilities” Volume 16, Number 1, Spring 2001, Pages 33-35

I’ve spent close to 30 years of my life working in many capacities with persons who fall on the autism spectrum. I started my professional career as a houseparent in a residential setting for children with autism. I have been a trainer of parents and teachers of such children, an educational and behavioral consultant, and a school psychologist completing diagnostic evaluations of children and adults with autism. The focus of this account will be on my role as a diagnostician. I’m finding that the more our understanding of the autism spectrum expands, the more I question what I am doing…

Although in my heart of hearts I know that a child or adult has Aspergers Syndrome, I ask myself whether it is helpful, in the long run, to identify the disorder. Often, in the short term, it seems to be. After all, the child or adult came to me because they needed help. I usually discuss the diagnosis first with the child’s parents. It was helpful for parents to recognize that there was nothing they had done to cause the child’s problems. Parents began to see their child, or even spouses in a different light. Instead of seeing behaviors as intentional or spiteful, they recognized them as constructive coping strategies in often very stressful situations. Instead of seeing their child as lazy and unmotivated, they saw him or her as struggling with pacing issues and the ability to prioritize, sequence, transfer knowledge, and do homework that was meaningless and redundant. In an attempt to help students and adults deal with everyday frustrations, I often ended up explaining Asperger Syndrome to them…

Many people, whether they are school age children or adults, who have experienced a fair amount of success in their life but also serious frustrations over problems in the social arena, are energized by a diagnosis. They feel that they have been given permission to let go of some of their worries and concerns and can now focus on what interests them the most. If these interests happen to have social value and, in addition, happen to coincide with their studies or profession, their confidence improves tremendously, which makes them significantly happier, better adjusted, and more productive people, which in turns improves their ability to make meaningful friends. This group creates the wonderful success stories we all enjoy hearing about.

However, people who have been struggling without much success in any aspect of their life often react very differently when given a diagnosis. Grateful to discover that their lack of success is not their fault, they devote their full time to learning more about the disorder. They begin to see each and every action and reaction as a symptom of autism or Asperger Syndrome. In fact, oftentimes their behaviors become increasingly unusual as they permit their autistic symptoms to “all hang out,” rather than repressing them or dealing with them as they had done before. In a sense, this group often becomes *more* autistic than they were before the diagnosis. As a result, they experience less success and more failure in life. Many people in this group quit their jobs, even though they were fully or marginally employed before a diagnosis, and apply for disability insurance instead. They often withdraw from relationships with neurotypicals that may have worked for them in the past. Instead, they seek out other people with the disorder, with whom they now feel more comfortable. There is nothing wrong in and of itself with this latter strategy; in fact, I have many times recommended such associations because they can be very positive and fulfilling. I have a lot of compassion for those who quit trying to function, because it is a natural reaction after struggling so hard and unsuccessfully with symptoms that were puzzling and not understood. However, I also have a concern about whether the diagnosis ended up having a positive or a negative influence on their life as a whole.

The last group of individuals, who may or may not have experienced a good measure of success, initially agree that Asperger Syndrome may describe their difficulties; however, they do not want to be singled out as different but want desperately to fit into and be accepted by the mainstream. These persons quickly come to resent hearing the term *Asperger Syndrome* applied to them, even though they may secretly acknowledge that it is an accurate diagnosis. They view the diagnosis only in terms of deficiencies and overlook the many positive characteristics that are associated with it. Those who are struggling with important aspects of their life, such as school, college, marriage, or employment, may be denying themselves the benefits that might come from a diagnosis, such as additional understanding and support from their peers, teachers, spouses, colleagues, and employers. For those who are satisfied with their successes, I fully understand their reluctance to cope with one more unnecessary hurdle in their lives.

A diagnosis is always very personal. There are no guidelines or requirements about when it should or should not be made available to others. As long as parents were in total control of the dissemination, the situation was fairly clear-cut. Where they deemed it to be helpful to their child, they used it freely; if they feared it wouldn’t help, they kept it under wraps. Once professionals started dealing with higher functioning persons, where control over the diagnosis often shifted to the person themselves, the impact of the diagnosis became much more complicated. There is no way I can predict whether or not a diagnosis will be helpful down the road when it clearly seems to be called for at the moment. And once I have made and shared a diagnosis, it is not possible to withdraw it when it no longer seems helpful…


Asperger, H. (1991). “Autistic psychopathy” in childhood. In U. Frith (Ed.), Autism and Asperger syndrome. Cambridge, UK: Cambridge University Press.
Attwood, T. (1998). Asperger’s syndrome: A guide for parents and professionals. London: Jessica Kingsley Publishers.
Gillberg, C. (1994). Diagnosis issues in Asperger syndrome. Paper presented at the 15th annual TEACCH conference, Chapel Hill, North Carolina.

This is Janet speaking, I believe that how a person reacts to a diagnosis of Asperger Syndrome depends on that person’s general personality make up. If the person is born an optimistic person, a “Glass is half full“- type person , then the way they this person deals with a diagnosis is going to be much different form the pessimistic person, the “Glass is half empty” -type person. Personally, I am a “Wow, look at this, someone put some water in this glass!” and I continue to amaze myself and others by doing the things that I have actually had the audacity and tenacity to accomplish. I do not accept other people limitations for myself.

"The only way of discovering the limits of the possible is to venture a little way past them into the impossible." -Arthur C Clarke's Second Law