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"
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
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
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 ]