Asperger’s Syndrome – The Pardox of Social Impairment and Profound Social Disconnectedness

The intricate labyrinth of this paradox exists within the assumption that a social impairment in and of itself, however that is defined and experienced in each individual (AS) life is tantamount to social disconnectedness

Gregory B. Yates, in his writing, “A Topological Theory of Autism,” explains that the three founders of “autism”, Eugen Bleuler, Leo Kanner, and Hans Asperger, “clearly saw other features of autism as secondary to social disconnectedness.” and emphasizes that this disconnectedness “…is the central, eponymous feature of autism it is the primary feature…”- “it is social disconnectedness that most defines autism…”

The degree to which there are differences, generally, between autism and Asperger’s Syndrome (AS), more specifically, in terms of this social disconnectedness varies greatly with each individual. It has been my experience that the manifestation of this social impairment and social disconnectedness also varies greatly between those with more classic forms of autism as opposed to those with Asperger’s Syndrome (AS). Even within those with AS the extent to which this paradoxical synergetic syndrome is present depends upon many individual factors including age of diagnosis, intervention, support, counselling and general educational intervention.

I experience this social disconnectedness, as an adult with Asperger’s Syndrome (AS), in ways that I imagine are more difficult for me and others like me than they may be for those with more classic autism. It is the awareness that one has with AS that often brings with it a more painful lack of connection. Many, like myself, with AS, to varying degrees, have strong desires to try to be as social as we can. This is, however, coalesced with what is an equally strong aversion to being social.

This paradox of simultaneously desiring and feeling aversion to social connectedness is born out of a lifetime of difficult and painful experiences in the social realm coupled with a lack of understanding and difficulty in truly being able to feel a sense of joining in what others are experiencing as a shared experience.

I am keenly aware, in the social realm, that while I have learned to do many things that one is supposed to do from all accounts and appearances I do not experience them in the same way that neuro-typicals (NTs) do. There is still this feeling of not totally understanding the feeling experience of the shared social experience. This reality is accompanied by the anxiety and the stress (overload to my system) that much of this activity produces within me. To state it outright and forthrightly, I do not derive joy from anything social.

My experience of joy is very much a by myself internalized proposition. Knowing this can be, at times, a source of frustration and pain. Even when I am social I am not really totally there. It’s difficult to explain this but as Yates explains, “Autistic people live like Tantalus*, with the fluent social interaction of others suspended before their eyes, out of reach.” I can relate to this. To try to actually join in and feel a shared experience socially is like reaching for forbidden fruit that moves ever so slightly back every time I reach up and forward toward it. I have been in many a social situation where I do just end up observing because the social interaction of others is suspended out there before me and for me is out of reach in terms of experiencing it the way that others appear to be and report experiencing shared meaningful times that fill them up. Trying to socialize, which I don’t mind in small doses, despite the pain of it all, for me is so stressful most of the time that unlike my NT friends empties me out leaving me just wanting to retreat back into my own world.

The fact that most NT’s describe socializing as being a “filling up” experience that adds something to them and I know that it is the opposite for me, I don’t see this as needing to be defined as anything else aside from a profound difference after its recognition.

Yates continues with the assertion that, “Social disconnectedness is the horse of autism: Secondary features are baggage in its cart.”

Not everything about this social disconnectedness is experienced as baggage. That said, I think it would be highly negating if I were to say that this disconnectedness doesn’t in fact leave an adult with AS with some baggage. It does.

The most difficult aspect of this baggage, which I’m sure varies with each adult with AS, though having, no doubt, some common themes, is that we are left to fend for ourselves with it. There are (with rare exceptions) no services for adults with Asperger’s Syndrome.

In my own experience, the mental health issues and co-morbid issues that can exist with AS and its incumbent or subsequent baggage, are not effectively being dealt with by traditional Mental Health delivery systems. While there are some therapists who will assist adults with AS they are not accessible to those without the funds and even then they are rare as most, if not all resources are currently focused on children with autism and/or Asperger’s Syndrome.

Today’s children are going to be tomorrow’s adults. The baggage that they will encounter as adults will still be sitting here, as is mine and that of other adults with AS. I continue to not understand the lack of services for adults and for those who are transitioning from adolescents to adulthood with all its more complicated issues.

I must stress here too that not all that AS brings to my life is about baggage. In the arena of social disconnectedness and trying to navigate the world of social beings however, yes, I have some baggage that I am continually aware of, working through, and trying to come to terms with. In this area, this baggage does impinge upon my self-acceptance, still, though I’m getting through that more now too. This is the reality of a paradox that adults with AS must not only live with but wrestle with in order to not be left feeling less than. This is why I stress that we are differently abled as opposed to the common societal stereotypical assessment that we are just disabled

Yates also asserts, “While some secondary features of autism are unpleasant, in a social world one autistic trait is truly devastating. That is autism’s defining characteristic itself – social disconnectedness.

I have found this trait quite devastating. While I continue to make progress in terms of what I have learned about mapping my social efforts I continue to find them often as painful as they are anything else. I am still in the process of dealing with this fact. The fact that I have to live with a high degree of social disconnectedness that I have enough insight about to feel saddened by at times. It is here, I have learned, that my self-acceptance depends upon my ability to continue to learn and grow in my ability to use compensatory strategies to meet my needs in the adult arena of relating.

Yates states that, “Autistic people vary in their desire for social interaction. However, even those who do not desire social contact can be devastated by its lack, for thriving in human society depends on social ability.”

I agree totally with Yates here. I have known other adults with Asperger’s Syndrome. I’ve seen vast differences between them and myself in many respects. I’ve also noticed that there are numerous and vast differences between men and women with Asperger’s as well. (More on this in an up-coming article)

I have been devastated by “its lack”. The lack of socialization in my life. By what remains (or certainly feels like) despite my best and most fervent efforts to socialize, relate, and be available in my primary relationship, a feeling of disconnectedness that often brings me back to a familiar pain that like a brick wall sitting between me and the world of social ability, has and continues to affect my thriving in the way in which most people define and value thriving

All is not lost here however. I am a great believer that even when diagnosed with AS in adulthood, as I was at the age of 40, we can make progress. I have learned a great deal. I continue to learn to compensate and to let those closest to me know what I need in order to be able to build bridges to them and have them build meaningful relational bridges to me.

I also believe that despite not experiencing a kind of social ability that clearly indicates thriving to our human society, I am thriving and will continue to build upon this thriving in my own way as defined by my own understanding, needs, wants, and my continued dedication to straddle what is at times a very unforgiving philosophical paradox.

What is defined as social impairment, again, can be construed as disabled or contrastingly as differently abled. One must take to task the notion that we are all supposed to be the same or that we all must have the same values and capacity in the social realm.

Having Asperger’s and knowing it should be a gateway to understanding not some societally imposed label that implies lack and that sees that lack pathologized.

It is my hope and my intention the more I come to understand my Asperger reality and the more I write about it that my readers will come to appreciate the differences that manifest in many ways that are the indicators of difference in brain functioning. That NT brain wiring is not superior to the brain wiring of those with Asperger’s and visa versa. This is all about difference and more specifically, acceptance of that difference and allowing each group of people to live as they must and flourish as they will.

To this end, coming out of this most basic difference in social ability and social connectedness or defined disconnectedness it is my hope that the system and parents of children with AS will stop believing and insisting on trying to normalize the autism/asperger’s out of their children. We are born the way we are for good reason. Let society expand its definition and understanding of worth, and change itself, and stop requiring that those of us on the autistic spectrum change or have to fit the NT mold in order to matter, to be functional, and to be able. We are very gifted and talented in our own ways. Who we are needs to be “good enough”. It needs to be “good enough” firstly to parents, secondly to society and equally to each adult diagnosed and left to fend for themselves, with Asperger’s, in adulthood.

We need bridges of understanding to and from each other. We do not need to be the same. We are all okay as we are, differences and all.

© A.J. Mahari – All rights reserved.

• Tantalus – (Greek mythology) a wicked king and son of Zeus; condemned in Hades to stand in water that receded when he tried to drink and beneath fruit that receded when he reached for it. (Source: www.dictionary.com )

Career Success For Adults With Asperger’s – Coaching Tips For Teamwork

It seems like everyone is worried about the economy right now. And for adults with Asperger’s, career issues can be especially challenging. But opportunity arises in times of change, and you can use the advantages of Asperger’s to build your career and ensure future job security.

Asperger’s Syndrome is a condition that carries strengths and weaknesses. For career success, the key is to know your own strengths and weaknesses, and use them to your advantage. What are some of the strengths of Asperger’s? In many cases, those with Asperger’s are logical, technically proficient, straightforward, hardworking, reliable and honest. All the traits that today’s more streamlined and cost conscious businesses need!

What about the challenges of Asperger’s Syndrome? According to Tony Attwood, in The Complete Guide to Asperger’s Syndrome, (2007, Jessica Kingsley Publishers) adults with Asperger’s may struggle with, among other things, teamwork, managing others, organization, conflicts, and coping with change. In this article, I give some tips for how to minimize the challenges of teamwork by emphasizing your strengths. Look for future articles on other challenges.

Challenge:Teamwork Issues

Suppose you’ve been assigned a group project, and it’s not going well. Think about the objective of the team here. The point is to get the job done. This is what you’re good at! Focus your energy on completing the job, even if it means doing more than your share, or trying other people’s ideas even when you know that yours are better.

While it may seem like the team isn’t being fair or that others aren’t doing their share, it rarely pays to go complaining to management. They’ve got bigger problems right now, and your boss is probably hoping that the project will get done without having to spend management resources on it. Make it your goal to be a part of a winning team. Trust that management will eventually notice who’s getting the work done, and who is just coasting along on the efforts of others. Your Asperger’s strengths give you a strong advantage here. Focus on the work, and leave the political maneuvering to the people who aren’t doing their share. Your company can’t afford to carry dead weight, so they’ll be paying attention to results, and who achieved them.

Coaching for Asperger’s Tip for Teamwork:

Complaining about teammates may get you labeled as a whiner or troublemaker. Adults with Asperger’s struggle with reading social signals, so it pays to get an impartial opinion from someone else. Make a pact with yourself that you will always get a second opinion before you discuss the problems of your group with anyone else at the office. Don’t complain to your boss without a second opinion!

Who to ask? Someone you can trust completely, preferably from outside the company, such as a spouse, close friend, former colleague, or mentor. Lay out what’s going on, ask for your advisor’s opinion on the people issues specifically, and listen to that opinion. Social skills aren’t your strength, that’s why you’re seeking advice. If you’re not sure who to trust, you might consider hiring a coach who is not part of the company, and who will be bound by ethics to keep your conversation confidential.

Where Can Adults With Autism or Asperger’s Find Friends?

OK, we all know that adults with autism or Asperger’s syndrome have trouble making friends – and if you are an adult with Asperger’s, this is probably sounding pretty familiar by now! But let’s now talk about ways to solve all of the problems of building friendships.

Yes, it is hard to make friends if you are an adult with Asperger’s syndrome. Yes, it’s lonely. But there ARE things that can help. There are organizations that can help; and tools and strategies that can help. Let’s talk about some of them.

Local Asperger’s Support Groups

The first line of defense, so to speak, for adults wanting to make friends should be Asperger’s groups and organizations dedicated to such things. This is because Aspies will tend to get along better with other Aspies as a general rule. It is wonderful to meet other people who think the same way you do, act the same way you do, talk the same way, and just generally understand you. Now, there is diversity in the Aspie population just like in the rest of the world. You won’t automatically get along with every Aspie in the world, but you do have a much, much better chance. You can find someone who shares your interests, someone who wants to “be” and interact in the same way that you want to.

Many of these organizations run support groups for adults with Asperger’s; some can put you in touch with others with Asperger’s syndrome.

Find a Group in Your City

Many cities have their own Asperger’s groups and meet­ings. These are definitely worth finding. Washington, DC, for example has a very large group called “Asperger Adults of Greater Washington,” or AAGW. It has almost forty people come to meetings every month. Most groups are not nearly that big. They meet in one corner of a tea cafe once a month. At the beginning, they have social time for their members to talk with each other-then they sometimes have a speaker or a discussion topic, and more free form social time at the end.

Every group for Aspies is run differently. Some focus on just free time for conversation, some are all speakers, some discussion based, some are more therapy oriented. Some only have as few as 4 members; others, like AAGW, could have as many as forty.

The wonderful thing about these groups is people are usu­ally very nonjudgmental. You can feel safe there, safe to be yourself. If you fidget a lot and can’t look anyone in the eyes, no one will care. If you talk about trains all day, they will understand. If you have too much anxiety to talk but just want to sit and listen, they will be glad to have you there. Whatever your level of functioning and way of being in the world, at an Aspie group you will be greeted sincerely. Most people are very friendly, although of course it depends on the person and group; and you will feel welcome. You will recognize yourself in others. You will feel less alone.

The OASIS website maintains a great list of local support groups in all fifty states. A lot of these are for parents but there are some for adults with Asperger’s syndrome too.

Also, try using Google to find local groups, or email a national Asperger’s email group to ask if anyone there knows of local groups (Examples are grasp.org groups, ASAN at autisticadvocacy.org, Autistic Daily living Yahoo group, etc.)

National Asperger’s Advocacy Groups

In addition to all the local groups, there are a few national or regional Asperger’s organizations that run support groups for adults with Asperger’s. These are all very useful groups to know about.

GRASP, or the Global and Regional Autistic Self Advocacy Network, runs support groups for adults in several dif­ferent states but focuses on the New York City region. Their current list of support groups include locations in California, Colorado, Iowa, Illinois, Michigan, New Mexico, Pennsylvania, Virginia, New York and more. There are several based in the New York City area.

ASAN, or the Autistic Self Advocacy Network, runs groups in several different states as well. These are run by people on the autism spectrum and are often focused more on political issues (such as advocating for rights for people on the spectrum, and how to work to reduce the number of negative messages about people with autism in the media, how to educate people about autism spectrum disorders, etc.).

ASAN’s website talks more about the goals of the organization. It was started by two young men in their 20s, both with Asperger’s. One was just starting college, one in grad school; both with a vision to create an organization for people with autism spectrum disorders; An organization run by people who had the same disorder in order to create a welcoming place of support and also to create an organization that would fight for the rights of people on the spectrum.

A third organization is the Asperger’s Association of New England, or AANE. They provide support groups in most of the six New England states. They are based in Boston, and have several groups in that area. They have social ac­tivity groups, where members go to various places together (bowling, out to dinner, to see a lecture), as well as support groups and social skills groups. A full listing of groups can be found at aane.org.

A great website to find support organizations and support groups which lists groups broken down by U.S. state is: aspergersyndrome.org

The listing of support organizations here is extensive. While these listings are not necessarily all oriented for adults, with a little work, you can likely find a support group that will meet your needs.

How Else Can Adults with Asperger’s Find Friends?

It’s useful to meet other adults with Asperger’s, but sometimes you just want to be able to make friends with the people around you. How can you accomplish that? How can you develop more friendships in your life?

Work on your social skills

One option is always to get counseling to help work on your social skills. A good counselor can tell you where you’re going wrong and work with you to help change the weak areas. They can identify those areas in which you need help, and model proper social skills. They can role model with you what to do and say in social situations. By working with a skilled therapist, you can be more aware of the way you come across, and gain more friends with your new, improved skills.

Seek out people you are compatible with!

But you still need a place to meet the right people. All the social skills in the world aren’t going to help you get along with just anyone. People have very different personalities, interests, and communication styles. You need to meet people who are compatible with you.

But how do I do that, you ask? Well, look around you. Decide what you have an interest in. If you like to read, join a book club. In the process of discussing the Great Gatsby, you just might stumble upon a kindred soul. Like to swim? Join a swimming club. Many Aspies make friends much better when they are DOING something with a person instead of just talking to them. They need something constructive to do while being with a person; that way the focus is on the activity instead of the conversation.

If you like history and World War II, join a historical preservation group. Maybe you can get involved in Civil War reenactments.

If you’re into sports at all, join a sports club; non-competitive sports are probably more likely to spur friendships than competitive, but you never know. If you like to sing, join a choir. If you like to write, find a writing group. The list is endless. The important thing is to match your skills and interests to a group of like-minded people. You might still have social skill issues, but you’ll have a common interest with these people and be much more likely to develop friendships. Just be patient and know that developing friendships takes time; it doesn’t happen overnight. Go slow and try not to rush things. Trying to rush into things will put pressure on the other person and make them much more likely to end the burgeoning friendship prematurely. It is hard to wait, yes, but worth it in the end.

Eight Places to Find Potential Friends

1. Intellectual interest groups

Book clubs, political discussion groups, moral and ethical discussion groups such as Socrates Cafe, MENSA are all good places to look.

2. Athletic Pursuits

Look into local groups for soccer, basketball, swimming, or any sport that you have an interest in.

3. Creative Activities

Arts and crafts, photography, painting, writing, and other creative arts; people meet to share work, discuss technique, or engage in said art during group time with others.

4. Religious Organizations

Churches and synagogues can be great places to meet others. Often they hold their own discussion groups, choirs and activities.

5. University Groups

If you have a college or university near you, they may hold special interest groups that are open to the public that you could join.

6. Science and Technology

Do you like computers? Science fiction? Medicine? Find like-minded people in a group dedicated to these topics.

7. Your Workplace

Sometimes you can find like-minded people in your workplace, or at least people to go out to a baseball game with. A lot of times this doesn’t happen, but it can occasionally.

8. Activity Groups

People might meet to play board games, chess, Scrabble, go hiking, or do any manner of activity together.

While it may be difficult for an adult with autism or Asperger’s syndrome to easily make friends, it is possible with a little thought and energy.