Reality of Asperger Diagnosis In Adulthood

© A.J. Mahari July 31, 2005

The reality of being diagnosed with AS in adulthood is that it is a very valuable opportunity to further discover who you are and why you are as you are. It is not something that you need to feel "less than" about at all.

The reality of AS in adulthood is that those of us with it are different in many ways from those who do not have AS. There is no need to judge that any further. The differences between adults with AS and those without AS needs to respected as such and we all need to work to understand each other. I do not believe that one way or the other of being in the world is better or more desirable. We are all as we are for very profound reasons with a purpose greater than anything we can try to attribute or judge or compare.

Firstly, if you are diagnosed with AS as a child there are some services, some support, and more often than not parental support. It is thought by many that being diagnosed as child and receiving “developmental intervention” very often helps children with AS to learn many needed coping skills over the course of several years.

If one is diagnosed in adulthood support or services are for the most non-existent. When one is an adult the degree to which one could, is expected not to, or even would want to rely upon parents of family is a limited and stressful dilemma.

Not to mention that for many diagnosed with AS as adults they are in relationships with significant others and many have children of their own.

When one is going through life not knowing he or she has Asperger’s Syndrome it can be very difficult. Knowing that you do have AS is difficult also. But I believe that knowledge is power.

And while Asperger’s Syndrome is not a mental health issue or mental illness, it is a developmental disorder with its roots in one’s biology (brain chemistry) it can significantly impact upon the lives of adults and their ability to relate and to have healthy successful adult relationships in many ways and the associated encountered difficulties often do cause the kind of difficulties that impact personality and do, in fact, call for some intervention with professional mental health care support. This is still almost impossible to find however.

So, we have more and more adults being diagnosed with Asperger’s Syndrome in their 30’s, 40’s and 50’s and once they are told of this there is no one to talk to about it professionally and no where to get support, further education and assistance. There is a wealth of information on line. There are plenty of lists upon which those with Asperger’s communicate their experiences and frustrations and those Neuro-typicals (NT’s) who are in relationship with them offer each other support and seek information as to how to best deal with the situations that arise in relationships when one partner has Asperger’s.

But actual real life (or even online therapy) that seeks to help those diagnosed as adults is still very much lacking. And when those who have been diagnosed as children reach adult age they fall into the great lacking abyss of no where to turn also. Not much is being done about this. I can’t figure out why.

What is needed is a greater understanding that while Asperger’s Syndrome is not a mental illness it can lead to many issues that make it quite the challenge to have a healthy personality, especially in the area of socializing and/or relating.

Most adults diagnosed with Asperger’s feel a wide-range of feelings associated with not only the diagnosis but the lack of anywhere to go to get help with it.

Feelings range from despair and grief, denial, feeling lost, feeling hopeless, to not understanding, initially the ramifications of this diagnosis. Many feel “other”, alienated, and that the message we receive from NT society is that we aren’t “normal” and that how we are in many situations or relationships isn’t okay.

Hearing that you have AS as an adult can feel very overwhelming and hopeless at the same time that you may feel, on a another level, tremendous relief because you will finally begin to understand why you have experienced so much of your life the ways that you have. You will also come to understand quite a bit about what has always left you feeling “out of it” socially and/or relationally and perhaps in some areas of communication as well.

You will begin to understand how your life has been affected by AS and how impacting your not knowing really has been. This can be a period of grief and of feeling like you are just stuck where you are, end of story.

Well, no, I don’t believe this has to be the case. Each one of diagnosed with Asperger’s Syndrome, especially in adulthood, has varied and differing experiences, levels of understanding and levels of ability.

What is crucial to know is that while there is not “cure” and most of us don’t really want to be cured anyway. There are ways that you can learn to compensate for all that you don’t quite do, get, want to do or experience in NT ways.

Being someone with Asperger's Syndrome is a different way of being in the world, more often than not, however, I don't believe it is something that needs to be fixed or cured. It needs, rather, to be much more understood. And we, as a world, need to learn a lot more about living with acceptance for all or our vast differences. If we can do this and accept and value our differences life would be so much better for so many. We "should" not have to be expected to all be the same or all communicate the same or even that we all need to want the same things out of life.

When I first found out I had Asperger’s at the age of 40 I thought it was a dead end. I thought my entire destiny had been tied to this up until that point even though I didn’t know why and that my entire destiny would always be ruled by having AS. I have come to find in the subsequent 7 years this is just not the case. Each of us with AS does have varying degrees of ability to cope with certain difficult aspects of Asperger’s. Even that said, though, we do have choices. The first and most crucial choice to make if you have just been diagnosed or you suspect that you or someone you love has Asperger’s is to educate yourself about all that it entails and means for you in your life.

While the DSM-IV lists Asperger’s Syndrome and lays out the landscape of challenge it is not a one-size-fits-all type of thing. Not every one of us is the same. We are not all affected by every trait. Some of us have more insight into certain aspects of what can be challenging for us in the NT world but we are not all alike. It is very important that you explore which traits fit for you and which traits don’t.

I have found much strength and much to celebrate about my individuality and uniqueness in and through being diagnosed with Asperger’s. There are traits that apply to me and traits that don’t.

Many of the strengths that I have, in life, are the blessings of having Asperger’s.

The main challenge when you are diagnosed as an adult is to work your way to understanding that you are NOT Asperger’s and that while it plays a role in your life it is not all that you are. To the extent that it can be somewhat defining of who you are, it is not something that can’t be worked with and that through compensatory strategies you can’t continue to improve areas of your life that are stressful and/or more challenging due to the very nature of what Asperger’s is and impacts in our lives.

It is important, however, that you not allow yourself to feel defective. You are not defective. You are different, likely in some very profound ways from many in your life. That’s it. No more, no less.

If you’ve just been diagnosed as an adult give yourself time to more fully understand it all. Read. Join an online support group. If you are in a relationship, try to help educate your significant other and your friends.

When educating yourself on line or by reading books remember to be very objective and to take what fits for you and leave the rest. We are not all the same by any means. We have many traits and propensities in common but we are not all the same.

Look for things that you can do (or employment) that best suits who you are and what your needs are. Once you come to some acceptance of your Asperger’s you can stop being a fish swimming up-stream with all the incumbent stress that creates.

Those of us with AS aren’t meant to be just like those NT’s who don’t have AS. We are different. The more we learn about ourselves and our AS the more we can come to the kind of acceptance that will assist us in finding ways to be fulfilled.

Being diagnosed with Asperger’s as and adult does mean that there isn’t much, if any, professional support in the way of counseling out there to help deal with all the challenges that we face. We have to be creative. We have to advocate for ourselves and each other wherever possible.

Initially, upon diagnosis, as an adult, you will feel a myriad of things. You may experience depression, deep grief, varying levels of frustration and feel alienated and/or lost. You may also very much feel relieved at finally having something to explore and understand that can to varying degrees help you to learn ways to better cope so that you can still achieve your goals in life and live a reasonably happy and productive life.

Be careful not to categorize every challenge or negative experience in your life as being the "fault" of the fact that you have Asperger's Syndrome. You are much more than just someone with AS, you are unique individual that has many other attributes and traits, skills, abilities, and challenges in life.

Give yourself time to learn more about AS and to explore what this means for you, individually, in your own life.

The reality of Asperger’s Syndrome in adulthood is that it a different way of being in the world. It is a gift. It has profound paradox with it that when more closely examined, understood, and valued can and will lead to self-acceptance and a life with rich meaning in whatever way that purpose is fulfilled and/or expressed.

d 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 2005

Next Article: Asperger Community?

as of September 26, 2005

Last up-dated September 3, 2006