Asperger Syndrome in Adulthood Does Diagnosis Matter?

Lynda Geller, Ph.D.
Clinical Director
Asperger Institute
A week does not go by when I do not receive a telephone or email inquiry from an adult who
wonders if he or she has Asperger Syndrome. It is not surprising that this idea is coming to
mind for many individuals. The media is more and more often covering stories about individuals
on the autism spectrum and we see many television shows with characters with Asperger
Syndrome. In addition, a frequent source for this question was that another family member,
usually a child, had received the diagnosis. Asperger Syndrome came into our diagnostic
nomenclature only in 1994, so most adults alive today were children when the diagnosis was
not known. If they had problems as children another explanation might have been considered
such as ADHD, learning disability, or conduct disorder. Now that more information is coming
into the public domain, these adults are reconsidering both their childhood past and their current
issues and wondering if Asperger Syndrome explains some important aspects of their being.
What advantages might there be for an adult to seek a diagnosis? I always ask individuals who
contact me what their reasons are and I have received quite varying responses. Some of the
most common include:
1.
Having difficulty with the social aspects of work and needing specific support in
that area.
Many individuals with Asperger Syndrome have work histories that include
seldom being chosen after an interview, being fired for reasons they do not understand,
not understanding basic elements of a job because they had trouble processing
instructions, and being very underemployed for their skill set. Solutions for these issues
might range from assessing processing problems and learning how to advocate for
oneself about these differences to having therapy that includes social autopsies of
difficult moments at work to obtaining a job coach who can understand and support
adults on the spectrum.
2.
Having difficulty with establishing or maintaining relationships. Individuals with
Asperger Syndrome typically have difficulty with relationships. Sometimes it is helpful
for a spouse to understand the origin of these difficulties to better accept and support a
partner. Sometimes the diagnosis helps children better understand a parent. For
individuals attempting to form relationships, therapy designed to support skill
development may be helpful if it is designed for individuals on the spectrum, but may not
be useful if it is simply generic psychotherapy.
3.
Struggling with the less structured life of a college student. Often high school
students with Asperger Syndrome are quite academically successful, yet find
themselves at sea in the much more self-directed and less structured life of college.
Disability offices frequently do not fully appreciate the obstacles that such students have
trying to function at college. Their difficulty with self-advocacy coupled with true
disabilities in organizational skills can lead to college failure of a potentially successful
student. Diagnosing Asperger Syndrome and examining specific co-occurring executive
function deficits can lead to the right kind of college support being designed.
4.
Understanding their child's Asperger Syndrome. As Asperger Syndrome has
genetic elements it is not uncommon for multiple family members to share the diagnosis
or, at least, display a number of similar traits. Many adults come to their own diagnosis
after their child has been diagnosed. Having a consultation about their own traits and
the experiences they had growing up can be therapeutic for them and helpful in
understanding their own child better.
5.
Eligibility for support services. Every state is different in the eligibility requirements to
receive services from the mental health and developmental disability systems (see the
policy research study at AspFi.org). In addition, eligibility for SSI, Medicare, or Medicaid
requires specific assessment and justification. For individuals who need a greater level
of support, attaining eligibility for these supports can be life saving. Often mature adults
with Asperger Syndrome are living with elderly parents without knowledge that they
could qualify for various support services. As their adult children seem very bright, and
may have advanced education, it does not occur to families that someone with Asperger
Syndrome can be eligible for significant supports to live more independently, be
employed, and receive needed therapies. Obtaining a diagnosis and life skills
assessment can be critical to obtaining needed support services.
6.
Finding a common bond with others. Many adults with Asperger Syndrome never
dreamed that there were so many others like themselves who have experienced similar
challenges and discrimination. In finding a support group, they may feel validated for the
first time in their lives. Obtaining a diagnosis of Asperger Syndrome may lead them to
others who can share their triumphs and defeats from a similar life perspective.
Obtaining a diagnosis can be a liberating, supportive, essential, critical, and defining
experience. Finding a professional who can guide one to appropriate avenues of intervention or
support is as important as the diagnosis itself. Professional s who say, "You have Asperger
Syndrome," but can offer little else are generally not useful for adults struggling with the
meaning of the potential diagnosis. Asperger Syndrome or autism support groups for
individuals or families typically can often refer adults who are wondering where to find an
appropriate diagnostician. Academic medical centers, university affiliated programs in
developmental disabilities, or autism and Asperger Syndrome centers can also be sources for
finding such specialists. Adults may chose to read "The Complete Guide to Asperger
Syndrome," by Tony Attwood as a first step to thinking about the appropriateness of the
diagnosis for themselves.
http://www.aboutourkids.org/articles/facing_life_autism_spectrum_disorders