V
Adult Diagnosis
and the Aftermath

A number of recently published books cover the issue of child and adult diagnosis and disclosure issues comprehensively. Several of them are listed as references at the end of this article. Obtaining a competent, thorough evaluation and diagnosis for an Asperger Syndrome child is still very problematic. However, the number of professionals doing a competent job is growing, funded largely by the availability of research and insurance coverage for medical and psychological diagnoses. Obtaining intervention and treatment for Asperger Syndrome "as AS" is still very difficult. Intelligent providers know how to play the billing-codes game with insurance companies and other funding sources to obtain third party payment for vital services to children.

By the time they are diagnosed and given the Asperger Syndrome label, adults have differing opinions about its value. If an AS parent is open to his child's diagnosis and the child's diagnosis is made early, the AS parent can take advantage of all the excellent information and support available to AS children to understand more about himself and start to review his various role relationships to his partner, the rest of his children, and others. This would be the ideal scenario, but things rarely happen like this. However, an increasing number of AS parents do perform very public, "up-front me-to's". Such early disclosure to strangers can impart a degree of authenticity and depth of understanding to parent observations about their children.

Many professionally or self-diagnosed AS adults experience relief at finding a "label that fits". The label is more than just a tag. It may take an adult a longer time to "remake" his or her understanding of their past as well as their present, primarily because their lives are more complicated and involve many others at different levels compared to the lives of their children.

Adult diagnosis may suddenly bring interpersonal problems to the fore in AS/non-spectrum partner relationships that have bubbled just beneath the surface and now have a name.

Since autism is a spectrum condition, some AS individuals exhibit more of the traits identified in this article than others who are also "on the spectrum". Looking at the family, one might be able to observe trait behaviors ranging from slightest to the most impaired signs of ASD. Family members only slightly touched by autism may not exhibit enough traits or with severity qualifying them for a diagnosis, but they clearly belong to what is called "the autism phenotype".

Suddenly more sensitive to autistic spectrum disorder, parents, educators and professionals may look in vain for the elusive "line drawn in the sand" distinguishing between those who "are" and those who "aren't" autistic. There are scales and other instruments that track professional diagnosis of ASD with increasing reliability, but scales and questionnaires are not diagnostic instruments. In the hands of amateurs and others out to prove a point, they may wreak more damage than bring light into complicated evaluations. Despite many years of research, there remains no single diagnostic tool for Asperger Syndrome that is universally accepted by medical and psychological professionals with doctoral degrees authorized to clinically diagnose individuals.

One thing is certain, however. With more sophisticated knowledge about ASD's persons “just barely on the spectrum” are the ones who can most easily be forgotten, or be pressured into trying to be something they are not. When forced to be “normal”, the result is depression, anger, moodiness, rage, and other psychological problems.

Whether one should seek a diagnosis is an entirely personal decision, but it must be truly voluntary. When individuals are forced by circumstances or "ordered by a partner" or a person in authority to "seek a label or else…", the outcome is rarely positive. One should never arrive at the professional diagnostician's office angry and belligerent. No responsible professional should consider evaluating a person in such a state of mind. Coming into a diagnostician's office riding another person's agenda may guarantee that the diagnosed individual may resist or deny the diagnosis. Even if correctly labeled, the individual may tote this most recent experience up with the many he has experienced in the past: a sense that someone, not themselves, is calling the shots, is again continuing to control their life.

Asperger Syndrome is a "label" not lightly given, nor lightly viewed. Receiving the label has life-changing consequences. Individuals who seek the label are generally relieved at being given an officially sanctioned description of something many of them have known for a long time, but that didn't previously have a name they could relate to.

The Non-Curious and the Deniers

The later the diagnosis, the greater the likelihood of an individual denying the diagnosis, remaining uncurious or being actively resistant to information about AS.

The reasons for this phenomenon are many, but the dynamic is similar to those who receive any kind of life-changing diagnosis and remain in denial about it. For some individuals, advanced age allows them to take the stance of, "What good does knowing about it do, anyway? Leave me alone!" For younger individuals expressing the same sentiment, the psychological cost to them of undoing the way they've always thought of themselves is just too high. Holding on to such an attitude forces others in their lives into increasingly disjointed relationships with them, as their knowledge and understanding grows and the "denier's" doesn't.

One thing is known for certain. If the AS individual in a committed relationship continues to deny his diagnosis, the relationship has virtually no chance of surviving. (Aston 2002; Aston 2003)

Connection between Self-Determination and Adult Employment

Late adolescent and young adults can remain highly resistant to changing self-concepts that they've recently struggled so hard to carve out for themselves. If any forward progress is to be made in their lives including any reasonable prospect of becoming independent of others and being capable of managing complex adult relationships and responsibilities, they must either undergo a very painful process of "unlearning recent lessons" or remain infantile and dependent on their aging parents and caregivers for the rest of their lives. Unfortunately, many of them do just that. These young adults are already heavily dependent upon their parents. Their parent(s) are also invested in the idea of having to care for their adult children as long as they can. Any professional unaware of their Asperger Syndrome would conclude that they and their parents have serious unresolved separation issues.

Parents of these adult children often have unrealistic expectations and fears about their children and the world of work. Their distorted attitudes don't just start when their child reaches the age of 18. Vocational research has shown that by the time children reach the mental age of six, they have well-defined concepts about work. If the parent has defective or distorted attitudes about disability and employment, the child's outlook towards work reflects those ideas. Regardless of the person's later age, these ideas "stick". They make the adolescent resistant to the idea of hard work (starting with doing household chores and doing homework) because there is a defective connection in their mind between the idea of work, desert, and complex values involved in becoming an independent adult.

If the late adolescent or young adult is lucky enough to make the connection between his special interests and a paying future or a career, he may be able to live out his life in a highly varied and individualistic relationship to the world of work. These individuals often finish high school or complete their GED's. Many of them continue on into post-secondary education, often with very specific career targets in mind. The pulling power -- the hook between a developable narrow interest and the prospect of substantial competitive market employment and independence -- must be very strong for such individuals to succeed.

Some do. Many do not. Dreams about extending one's life interest into a way of supporting oneself in adulthood are tenuous threads often not strong enough to withstand the weight of real adult responsibilities. For the most part, AS individuals stuck in the type of mind-warp described above, do not succeed in becoming productive, competitive employment market employees.

Even for successful individuals, it is safe to say that there is no set of "ideal jobs" for persons with Asperger Syndrome. AS is one of the few cognitive disabilities where an essential fit must exist between the individual's unique and narrowly expressed interests and strengths and "a" particular job. Most AS individuals and their families cannot afford the kind of careful functional vocational evaluation needed to provide a given individual with even a limited range of career choices from which to choose.

Opinions offered by vocational experts tying their limited understanding of Asperger Syndrome and the number of "available jobs" in the economy often reflect their failure to understand the individualized character of the job-matching process and the amount of work it takes rehabilitation specialists and job developers to arrange for successful outcomes for persons with cognitive and developmental disorders.

Asperger Syndrome is a particularly difficult disorder to understand because little is known about "success" in placing individuals with this disorder into competitive employment. The few pilot programs that concentrated on employment services just for individuals with Asperger Syndrome have closed after running only several years at very high cost. The conclusion program evaluators have come to repeatedly is that even ideal candidates for these programs experience nearly one hundred percent long time retention failure due to the withdrawal of intense post-placement training and support services.

For families with the means to support them or for individuals been found eligible for categorical assistance as disabled adults, customized job development or uniquely dogged determination by care givers or community support professionals can help them find some type of personally meaningful employment in the workplace. Because they are autistic, succesful placement and retention -- way beyond Vocational Rehabilitation's statistical determination of sixty or ninety days -- must appeal to their self-interest, their circumscribed special interests, or it will fail. For individuals whose interests are singular, narrow or immature, having others "find a match" is possible only in a tiny number of cases.

For individuals without independent family means to support their interest in employment, Vocational Rehabilitation offers a possibility. However, individuals with mental illness and developmental disabilities consistently rank at the bottom of all successful public VR case closures and have done so for decades. Despite all of the information about Asperger Syndrome available over the past ten years, few VR professionals know anything about it. Even when they do, their success rate has been miserable. AS clients often end up being passed around to successive workers VR branch offices with managers' hopes that maybe the next counselor assignment "will stick." It doesn't. The outcome is the same: short-term, inappropriate placement based upon little understanding of the client's individual needs, then return of the client through the revolving door, this time to be assigned to the next worker. Eventually, the AS client gives up.

In the future, even when his mental attitude is more positive, the average AS adult who has been through such past "treatment" by the system will rarely give VR a second -- or more likely a fifth or sixth -- chance. The reason for his disinclination relates only partially to his past failed experiences. Even if he has a more positive mental outlook, the extent of his autistic cognitive impairment hasn't changed. It isn't only a positive outlook that would make the real difference. The only thing that will kick that difference over the top is patient professional cognitive-behavioral counseling that begins to unhook the hard-wired connections between attitudes and behavior that characterize Asperger Syndrome. Few individuals can afford such counselling on their own, and up to this point, no publicly funded Vocational Rehabilitation program has ever supported this type of personal work. Without a support system that does so, the AS individual is likely to remain stuck, mired in good intentions but without the cognitive tools to turn those good intentions into success on the job.

REFERENCES -  [ under construction ]

"We each have our own way of living in the world, together we are like a symphony.
Some are the melody, some are the rhythm, some are the harmony
               It all blends together, we are like a symphony, and each part is crucial.
We all contribute to the song of life."
...Sondra Williams

We might not always agree; but TOGETHER we will make a difference.