women and aspergers

Diagnosis of Asperger’s Syndrome In Adulthood

More adults are being diagnosed with Asperger’s Syndrome. More adults are finding out they have Asperger’s in some part likely due to the explosion of information about it on the internet. For some adults, however, they are getting diagnosed with AS after they have a child who gets diagnosed with AS.

An issue that comes up over and over for many adults is why should I bother to seek a diagnosis at my age?

It’s a good and fair question to which there isn’t really any one correct answer or globally compelling reason to seek an official diagnosis.

There are many adults who know that they have Asperger’s Syndrome(AS) inherently after reading information on line or in a book or hearing about the experiences of someone else with Asperger’s. Many do not need or ever seek an official diagnosis.

There is a growing movement within the on-line AS community that supports self-diagnosis based upon peer acknowledgment or validation. This peer acknowledgment and/or validation takes place when an adult who believe they have AS talks (emails, chats) with others who have AS and the commonality of experience becomes irrefutably obvious.

I have experienced both, actually. I have experienced being told I didn’t have Asperger’s Syndrome, then an actual diagnosis, and then further to this I have experienced more peer validation from taking to other adult Aspies who mirrored so much of my life experience and how I have felt through it and as the result of it. Should one way of knowing that I have AS be more important than the other? I’m not so sure.

I believe that many people these days are coming to understand many things about themselves via the internet as well as books. However, online one can do much more than just read information. There are email lists, message boards, and places to actually chat that facilitate the coming together of Aspies who might not otherwise ever cross each other’s paths and learn from one another.

If you can seek a diagnosis because you have coverage for the assessment or you can afford to, then of course, it makes perfect sense to do so. If, however, you can’t access services either due to lack of insurance coverage or trained professionals in your area, I believe that what you know about yourself is more often accurate than not.

The reality of seeking out a professional assessment and diagnosis, for women with Asperger’s Syndrome, is even more complicated and difficult than that of men. Most of the diagnostic criteria have been built upon clinician’s experience of making diagnoses primarily of males. Women with Asperger’s do not necessarily present in the same ways that most men do. It is not uncommon that women are misdiagnosed and sent way more often than there male counterparts into the Mental Health System. Mental Health Systems are not designed whatsoever to facilitate the kind of support someone with AS requires.

Coming to the knowledge that one has AS or being diagnosed with it officially in adulthood does present different challenges than those who find out in their childhoods have to face.

Children these days are benefiting from more and more intervention to teach them how to strengthen certain areas where some skills are lacking. They are being “trained” in how to think and behave like Neuro-Typicals. Some people believe this is a positive thing. I’m sure in some ways it can have positive benefits. However, there are many who wonder about the effectiveness of this approach and also feel that by trying to change so much about a youngster with AS there is not the acceptance level for those who are on the autistic spectrum that there needs to be and should be.

There are definitely challenges to being an adult Aspie. Some can be painful or frustrating and isolating for sure. However, while I might wish there were a few more skills I was taught as a child to manage relating, for example, when I was younger, there is a lot about me that I would feel very sad about having had changed. A lot of who I am has been shaped and molded to some degree by the fact that I have AS. Some of that is not as positive as the rest but I strongly believe that the more I find my way in life, my way, the better off I am.

I am glad that I was diagnosed. I am glad that I know and understand and continue to learn more about what having Asperger’s means in my life and in my relating to the world. Knowing this has increased my ability to love myself and accept myself for who I am and to stop comparing myself endlessly and unfavourably to others.

To this end then, knowing that one has AS is useful information and can be very important in terms of helping an adult with AS learn to make necessary adjustments to cope with the rest of the world and to relate to it in ways that make a little more sense to it.

So, seeking a diagnosis regardless of age for any adult is likely worth it. However, there is almost equal value in knowing what you know about yourself. Through sharing your experiences and difficulties with others on line you can truly learn to assess for yourself if you fit the AS profile or not. If you are a female, however, please look for other women with AS to talk to and read up on how AS can look and be different for females.

Knowledge is power and this applies to understanding ourselves better. If you can get formally diagnosed it’s a good idea. Knowing that you have AS and learning to understand that and the way that it impacts your relating, relationships, and overall functioning and way of relating to the world in general is a very valuable thing that can only add to your self-acceptance and self-understanding in time, in ways that will enable you to find more peace and contentment in life.

© Ms. A.J. Mahari 2004 – addition February 2009 – all rights reserved.


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.

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:

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.

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
writes Catherine Faherty in an article entitled
Asperger’s Syndrome in Women: A Different Set of Challenges?

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.