Friday, September 28, 2012

Aspergers and exhaustion

It is rather fitting that I don't have the energy to write a whole original blog post about exhaustion. I found this on the Asperger's Association of New England's web page. Quoting the following paragraphs because it makes so much sense. I may write some more about this, and about the huge role a supportive and knowledgeable therapist is playing in my life, helping me to understand this exhaustion.

How is it that some adults can present so well? Adults with Asperger Syndrome grew up before the diagnosis existed in the United States; it appeared in the DSM-IV in 1994. The diagnosis may not have existed but the adults did—and they needed to find ways to survive. The adults that I have met are survivors. (See Mark Goodman article I Am A Survivor). Without the neurology that supported an intuitive understanding of social behavior, many adults with AS learned to spend their time observing their environment and the people around them. They tried to make sense of the confounding behavior of their peers and tried to understand why people were always telling them, “You’re so smart, why can’t you just…(fill in the blank): go to a family function and behave (sensory, social and anxiety), complete this work assignment (executive function, processing speed), just do what’s asked of you (illogical, theory of mind), tell a therapist how you’re feeling (reliance on thinking more than feeling). Through observation and trial and error (after error), many managed to survive into adulthood. Some adults with AS develop an understanding of the world around them, a framework of how and where they fit or don’t, learn and apply skills and strategies to use in particular situations, anticipate and manage disturbing sensory input. Imagine how absolutely exhausting it is to do all of those things relying on cognition, not intuition. Nevertheless, after years of applying these skills and strategies, an adult with AS can look pretty good, maybe even “passing”—or almost passing—for NT (neurotypical).
So after years of practice and trying to fit or find a comfortable place in the world, some adults with AS have put together a life and many live with the worry that it could all come apart because of how precariously it is crafted. Working so hard to fit in, to understand or hide your neurology comes with a very high price tag. In addition to the exhaustion, mentioned before, there is often a huge overlay of depression and anxiety on top of the basic neurological condition of AS. It is depressing when there is no obvious place in the world where one belongs; when everyone else seems to know the rules by heart and you’ve never been given the manual. The repeated trial and failures to make friends, work, live independently, manage your own affairs and even succeed in therapy are constant reminders of being “less than;” it should be no surprise that these experiences so often lead to depression. Why not be anxious when “the world outside [your] door is scary”. It is unknown, unpredictable, full of people walking down the same sidewalk that you are, crowded MBTA trains, store clerks who may want to talk to you, sensory assaults and a myriad of things that are not within your control. With a lack of intuitive ability to generalize, every time you go out the front door is a new challenge. More or less neurotypical people do not have to think just to function somewhat comfortably in the world. Many adults with AS operate from a baseline of anxiety. Faced with the additional anxieties that come from living in an unpredictable world, an adult with AS who can look pretty good in one setting can fall apart in another.

Wednesday, September 26, 2012

You must be really high functioning

"You must be really high functioning!" and "I would never have guessed!" These are very common responses to me disclosing that I am on the autism spectrum. Because I am married, have children, run a  household, drive a car, buy groceries, read books, am intelligent and verbal - the autism must be a very small part of me, almost negligible. I realise that people sometimes see the above remarks as compliments. And I look 'normal' to them.

But I really do wish people would stop thinking in terms of high and low functioning. The more 'high functioning' people think you are, the less help you can expect, and the higher the possibility that your specific struggles will be seen as character deficits instead of part of your autism.

I must be highly functioning because I am fully verbal. Then why can I not share a fraction of the thoughts I have? I am constantly thinking, analysing, developing theories, studying, learning in my head. And when you ask me what I am thinking, I will most of the time lose my words. I have to put in a lot of effort sometimes to share my thoughts, and the words that I manage are so inadequate that it does not feel worth all the effort. Writing is easier than speaking, but even then it can take days to put the words on paper, and still they don't reflect the complexity and beauty of the thoughts I live with.

I must be high functioning because I can go into shops and buy what I and my family need. Then why do I only feel comfortable going into shops I know well? Why do I often cry and feel lost in shops where the layout is confusing and the procedures hard to understand? Why do the music and the voices of some people in the shops make me leave without buying anything? Why do I fear to the point of feeling sick going into shops where I have no idea what to expect?

I must be high functioning because I can run a household. Then why is my house always in a state of near chaos? Why are there bills not being paid on time? Why does it frustrate me that my family are not willing to eat the same dish for three weeks in a row? Why are there so many things I know I should do, but find so hard? Why is it so hard to start things, so hard to finish them, so hard to be patient when I am interrupted when I have managed to start something?

I must be high functioning because I can make small talk and have conversations. So why does social contact tire me out so much? Why do I still have to concentrate on tone of voice, body language, appropriate responses? Why do I try so hard to be accommodating, respectful and mindful of others, and still manage to offend, come over as disrespectful and difficult?

And why are people unaware of my struggles and frustration and exhaustion? It used to be that I cared about what others thought of me - I had to care to protect myself against ridicule and isolation and dislike. I have stopped caring so much. I accept and like myself now and the opinions of others cannot shake my belief in myself so violently any more. These days I keep my otherness hidden because I do not have the energy and motivation to explain. Because I don't trust the ability of others to understand. And because I don't want to place a burden on my family. I will keep on counting my many blessings and try to find ways to manage my frustration and tiredness.

So before people make remarks about functioning levels, it would be a good idea to stop for a moment and realise that they don't really know what goes on in others' lives, how they function and what their challenges are.

Sunday, September 2, 2012

Wrong reactions, valid reactions

OK, so I find it hard to read people. I find it hard to discern their intentions. I find it hard to identify the emotions they successfully hide and even deny.

I often feel hurt or confused after interactions with people. And because 'not knowing' does not sit well with me, I analyse. I think about what happened or did not happen, I try to fill in the blank spaces, I try to think of possible intentions, emotions and other signs I missed. And because I am aware of my lesser ability to read between the lines, it is important to me to give others the benefit of the doubt. This is mostly a private process, I am not inclined to rush out to find someone to go through the process with me.

But sometimes I have shared. And the reactions almost always started with a BUT. Suggestions that I am holding the wrong end of the stick. That I don't quite understand. That I have misread intentions. That people actually meant well. That I have to change my perceptions. That I should not feel hurt. That my reactions are wrong. My expectations too high. My emotions too strong. And sometimes this is followed by little 'lessons' about why people do things, say things, act in ways that I don't understand.

But I don't need this feedback any more. No, I can do it all by myself. Tell myself that I am overreacting, not understanding, wrong, immature. And I am tired of it. I need to feel good about myself, I need to trust my own views and opinions. I need to see my reactions and emotions as valid. I believe I have gained insights that are valuable and true. My reactions to the world and other people may sometimes be different and hard to explain, but that does not make them any less valid and real.

So where does this leave me? I don't know. Alone in my own head? Feels like that most of the time. But I do know that that is not healthy for me. I do need meaningful social contact and discussion. Which can be tricky, because …. go back to the first sentence!