Being Diagnosed with Asperger’s Syndrome as an adult

A.J. Mahari, is a woman who was diagnosed with Asperger's Syndrome in adulthood. She writes about Asperger's Syndrome from her own life experience, with among other things, a particular focus on Asperger's in adulthood and Asperger's in females.

Finally
adults are being diagnosed with Asperger’s Syndrome as it becomes much
more understood. There is still a gap in professional services between
Developmental Disorders and Mental Health Disorders. These health care
systems are planets that orbit each other but fail to acknowledge their
overlapping universe. The result is a lot of
pain and misunderstanding for too many adults, and maybe more women
than men.

By Barbara L. Kirby, Founder of the OASIS Web site writes:

“Asperger
Syndrome or (Asperger's Disorder) is a neurobiological disorder named
for a Viennese physician, Hans Asperger, who in 1944 published a paper
which described a pattern of behaviors in several young boys who had
normal intelligence and language development, but who also exhibited
autistic-like behaviors and marked deficiencies in social and
communication skills. In spite of the publication of his paper in the
1940's, it wasn't until 1994 that Asperger Syndrome was added to the
DSM IV and only in the past few years has AS been recognized by
professionals and parents."

To read more about Asperger’s Syndrome you can visit my website's
Message Forum and also for the DSM-IV definition you can go to What Is Asperger’s Syndrome.

Asperger’s Syndrome is still diagnosed way more often in males than it is in females.

“According
to Tony Attwood and other professionals in the field, women with high
functioning autism and Aspergers may be an underdiagnosed population.
If this is true, some of the reasons may be attributed to gender
differences.” writes Catherine Faherty in an article entitled
Asperger’s Syndrome in Women: A Different Set of Challenges?

In
recent years, Asperger’s Syndrome is being recognized and diagnosed in
adults and not just in children. Many adults who have been misdiagnosed
with a host of psychiatric labels are finally being recognized as
having this developmental disorder. While AS is not a psychiatric
disorder, it can cause issues to arise that create other
types of challenges that then threaten the overall mental health of the
adult with AS.

Given
the reluctance of many professionals to recognize Asperger’s in adults
many adults have suffered needlessly. There still is a gap between the
Mental Health delivery system and the Developmental Disorders delivery
system where there should be a healthy over-lap so that adults who were
misdiagnosed with a host of psychiatric issues until their AS was
recognized and diagnosed have some recourse to work through the damage
that is done when one is misdiagnosed and not properly treated. In many
areas of the world, there is still a lack of professional counselors to
help adults with this diagnosis and the challenges that they face in
their lives.

The
greatest sources of damage for adult Aspies who are diagnosed only
after nightmare involvement with Mental Health Systems results from the
false-hope given, the inappropriate, unhelpful and often damaging
medication that they are saddled with, the unrealistic expectations
placed upon them for change along with the pathologizing of what is for
“normal” for those with AS. Unlike many mental health disorders,
Asperger’s with its etiology in physiology is more intractable than
disorders based in the emotional realm psychologically.

Kicking
around in the mental health system, as many adult Aspies have, can and
does do its own type of damage and has for many adults only added
insult to injury. Most adults who are diagnosed with AS, no matter what
process they have to work through in understanding and self-acceptance,
find the diagnosis a meaningful revelation in their lives. Substantial
enough in scope, is this diagnosis, that it can mean the difference
between a life of self-recrimination, self-loathing, self-hatred,
isolation, alienation,
or an increased understanding of self that enables those diagnosed with
AS to make much more sense out of their lives and experiences.

This
leads to a much greater chance for self-acceptance, self-worth,
self-love and esteem. With this insight and understanding as to why
socialization, communication and relating are often so challenging
adults with AS can learn to “join in”, learn to feel less alienated as
they learn new and different coping strategies that allow them to
compensate for the areas in relating that can make
life very difficult and lonely.

Inherent
in each of most of us is a desire to love and be loved. Connection is
just as vital for an adult with Asperger’s as it is for those who are
Neuro-Typical (NT) and don’t have Asperger’s. It may not look the same
as most NT’s desire for, or ways of, connecting. Those with Asperger’s
also have a wide range of emotions. What is substantially different
from the feelings of NT’s is the compromised ability to express those
emotions.

The
parents of children diagnosed with Asperger’s now, are able to find
support and services for their kids that can teach the Aspie Kids a lot
of skills and compensatory strategies that most adult Aspies have not
had a chance to learn or have any support around.

To
come to a diagnosis of Asperger’s Syndrome in adulthood, as I did, at
the age of 40, can initially be both a relief and a nightmare. The
relief, as I experienced it, had all to do with finally understanding
so much about all that was so difficult and painful in my life.

The
nightmare was the process it took to integrate how much I had suffered
without an understanding of why I had been so alone (always felt
different) most of my life and why trying to relate to others or be
social was extremely difficult most of the time, if not impossible, for
me at other times.

Without
any understanding of what was really behind most of my relational
difficulties I was left to feel, time and time again, like I was “less
than”, like a failure. I experienced this as being “unlikable and
unlovable” Feeling this way lead me to feel very alienated. I had spent
most of my life frantically searching for what was “wrong” with me. My
family, peers, and society at large gave me endless messages that I was
not okay.

Not
understanding this very pervasive aspect of myself left me unable to
really understand who I was. Without this knowledge of my “self” I was
lost and in a great deal of pain for much of my first 40 years of life.
Not knowing why I was the way I was, the way that I am, still, caused
me to try to be whatever others told me I “should” be. This was
torture. This is the epitome of being lost. I was alienated from my
very self by the expectations and judgments of others.

My
lack of being “what others expected me to be” along with my lack of
knowing what others have always expected that I “should” know based
upon my age or intelligence was literally crazy-making.

I will be sharing a lot more of my personal experience here in future articles.

I
am still in the process of evolving as I continue to attempt to reach
the kind of self-acceptance that allows for consistent hope and
optimism and a meaningful personal peace.

© Ms. A.J. Mahari February 2004 with additions February 6, 2009 –
All rights reserved.