Disability: Excuse or Explanation?

This is a fundamental question in my own life.

When faced with something that is challenging because of my autism, do I accept that it is not worth the trouble to do it or do I force myself through my difficulties to do it anyway?

Partly, of course, it depends what it is.  But what is my default?

Before I knew that I had Asperger’s, I worked very hard to keep up with my peers.  I pushed myself to do things out of my comfort zone.  My strong desire was to stay quietly at home, to not stretch, to not engage in the world.  I was all about self-improvement, though, and I saw others going out to make their fortune, as they used to say in adventure books.  I moved out of my parents’ house, out of the State, and forced myself to live independently.

I’m glad that I did.

However, there have been times that pushing myself beyond my comfort zone has resulted in pain and meltdown.  I have learned over the years what sorts of things trigger a meltdown in me.  I tend to avoid those stimuli.  Is that the right choice?  Should I be pushing myself to learn to deal with the aspects of life that I find particularly difficult?

I’ve already managed to get pretty good at passing for not autistic.  I can mimic small talk (and I feel a rush of pride when I do it well).  I can pretend to be outgoing for an hour or so at a time.

The temptation is huge, though, now that I do have a diagnosis, to give in to it.  To tell people that I’m just not going to pretend anymore. I want to be how I am and stop trying to imitate other people. It’s exhausting and I end up feeling like no one understands me or knows me.  I know that I’m capable of growing and making improvement, but presumably there is a cap to that. Does being able to fairly successfully pass for neuro-typical mean that I’m not autistic anymore?  Could I actually “out grow” it if I pushed hard enough? Do I want to? Is it my job to make myself “better” and as “normal” as I can?

If I had a diagnosis a few years ago, I might have given up sooner on finding a job that suited me. I hated so many of the jobs I tried,but I finally found a quirky company where my eccentricities do not hinder me.  I might not have found that if I had used Asperger’s as an excuse.

Should I be trying to “cure” myself? To do everything the way a “normal” person does because if I push myself hard enough, I can?

Should I accept that I am different and I do things differently and that’s okay? If I tell someone, this is difficult for me and I’ve chosen not to do it, they are likely to say behind my back that I make excuses and who do I think I am anyway.  Some people think I’m making it up or just being difficult.  I worry that people think I’m just trying to get out of something. I’m making an excuse and letting myself off the hook.

Here is a scenario to illustrate:

I went to the Rennaisance Faire with friends from work one Saturday.  Crowds of people tend to scare and overwhelm me and I usually limit my exposure to them. Another challenge at a Renn Faire is that I get lost remarkably easily, with no sense of direction or where I am.  Most of the time I try not to think about it because it’s terrifying if I face that most of my life I spend not knowing where I am or how to get home (thank goodness for my GPS!).

 

After a couple of hours, I needed to use the bathroom and my friends did not. They said they would meet me at the big stage.  Fear rose up in me. I didn’t want them to go.  I wanted to ask them to wait for me because I knew I would have a difficult time finding them and I might panic and have a meltdown. But I am an adult. I wanted to be a normal, grown-up person. I didn’t voice my fears, I didn’t tell them that there’s a reason why I didn’t want to get separated.  I didn’t give my explanation. How simple it would have been in that moment to say, “I have Asperger’s and I don’t want to be left alone.” But I didn’t want to make excuses and sound like a baby.

 

Predictably, when I got out of the bathroom, I couldn’t find them.  It took me a while to locate a stage at all, let alone a big one. I finally found the one I thought they meant, but the one I thought was the big one was not the same as the one they thought was the big one, apparently.  By this time, the panic and fear was just at the edge of my brain, threatening to take over.

 

I tried to call my friends, but the reception was bad and I didn’t get through.  I needed help at this point.  I needed someone else to take over with the decision making, as I was moments away from plopping down on the ground and sobbing my eyes out.  The trouble is: when you’re 29 years old, people are scared when they see you do this. They don’t help as they would if you were 6.

 

I focused on my breath, tried to keep the panic at bay. It worked.  There were tears leaking down my face, but I wasn’t collapsed on the ground.  I kept telling myself that it was going to be okay.  I fought my way through my fear.

 

My friend eventually found me and I had not given in to my instinct to panic.  Was that a good thing? Was it better that I fight hard to behave like a “normal” person or should I have asked for the help that I wanted? I seriously considered telling some person nearby that I was intellectually disabled just to get them to help me, even though it’s not true.

Is it better to give deference to my disability or to spend my life fighting against it? I think this is a question for everyone who has a disability, visible or invisible.  Do we spend our lives looking for a cure, hoping to fix it? Do we refuse to give even a consideration to a possible limitation we have?  Or do we live in a way that is comfortable to us, within the bounds of a disability?

I think I should have asked for help.  I think that I shouldn’t have to make myself stronger than I am comfortable being so no one sees my weakness.  In that scenario, if I had acknowledged my weakness ahead of time and asked for help from my friends, I could have avoided the later pain.

Why should I accept that a neruo-typical way of looking at the world is the better one?  I think that my unusual approach to problems is a value, not a problem.

I will always have meltdowns and things I just don’t deal well with.  I accept that. But I don’t withdraw from life because of them.  I get up the next day and continue the fight to live authentically as me.  I don’t need to make the negative side of my disability go away, I need to acknowledge that other people have a choice whether they want to accept me or not.  They can think I’m making excuses if they want, but I know what I’m comfortable with and when I’m feeling strong enough to push my boundaries.

Some days I will fight to expand my comfort zone and learn to deal with new things.  Other days I will need to self-soothe and withdraw from the world.  I will not feel bad for making a new choice that feels right for me each moment of each day. I have no long term answer. I think this is a question that we all have to wrestle with.

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