Women on the Spectrum RAWRing for Quality of Life

Singing for Freedom, Bending the Bars of the ASD Cage

Happiness.  Who doesn’t want more of that?  The goal on this page is to highlight issues of quality of life for ASD women, so guess what? Happiness is a big part of this picture–according to research.  More than that, I’m learning my personal feeling that we’re a broody lot is also backed up by scientific research.  Not going to bore you all with lots of science quotes, but the article and abstract links are here in case your inner science geek is RAWRing.  Upshot is, there are numbers, statistics and objective scientific findings that say what you already know:  autistics are a lot more likely to be unhappy (depressed) than people who aren’t autistic.

Depressing, right?

Eh, not so much.  See, Science has to first prove there is a problem before she can set about a solution.  We’re on our way, friends, take heart in that.  In the meantime, I’ve been trawling the net looking for tips on how to be happy.  There are lots of similar lists out there:  don’t worry, let the past go, forgive, enjoy your friends, get out and live life to the fullest.

All sound advice, and usually a lot easier to take if you aren’t on the spectrum.  I’ve spent months contemplating this problem, knowing that my personhood demands certain social needs be met, and that my autism demands avoiding situations that will overtax stressed physical systems.  Sometimes the two opposing needs have caged me; at those times my loneliness is greatest.  Still, I know that the low-stimulus cage I’ve placed around myself is my own.  I made it.  I need it to function at my best.  Sometimes it’s a narrow thing between keeping functional and keeping happy–and there are consequences to cheating either.

Getting out and among people, I usually come away physically and emotionally battered–and unable to speak.  I love being around people, sharing experiences and laughing–that’s good for every human’s soul, to feel good in community with others.  We are social animals, and we need each other.  Yet, the pain and recovery from those experiences can sometimes overshadow the benefits of companionship.  For me, filling those social needs means a sacrifice of functionality.  It’s tempting to claim we don’t have those needs; it’s tempting to ignore them or disconnect from the desire for community altogether.  This cages us as much as trying to live a full, “normal” life, painfully going through the gyrations of seeming neurotypical (NT).

This, I think, is why we have such a challenging time with happiness.  We are caged by our bodies, and their need for processing time, settling time, stim time, reflection and recovery.  Yet, we may also e caged by the belief that if we can simply conform, we can get out and do everything NTs do without consequence–in the name of living life to the fullest.  Both ways of navigating life are cages, robbing us of our humanity or robbing us of our individual needs.  Even when trying to find balance between these two approaches, it’s very easy to miscalculate.  Sometimes I misstep, and end up huddled in a ball in the shower–either because I tried to go to a networking event after five hours of giving lectures or because I turned down so much social interaction that I haven’t spoken to a single person (who actually cares about me) in weeks.

Being practical, logical sorts who are often disconnected from our hearts, I think we see the loss of functionality more clearly than the loss of community.  Feelings of belonging are basic needs, like eating, drinking and sleeping.  Who can forget Wilson from the movie Castaway?  (Was I the only one who cried when Wilson got washed away?)  Deep loneliness, being separated from loved ones is something that resonates to the core of many of us.  Sometimes finding a reason to survive is just as simple as having someone around to share your experience.

This isn’t meant to be a downer of a post, really, although I fear some may see it that way.  I had a brush with some deep loneliness this week, but instead of feeling futile and self-chastising about it, I started to realize that I had constructed that result on my own–by neglecting my social needs in favor of functional needs for too many days in a row.  It took the sting out of the feeling, and got me thinking of better ways to balance my life between these two goals, for happiness means honestly paying attention to both.

In other words, being alone this week wasn’t something I should blame on being a loser or a dork or…being different from most of the other people in my life.  It was simply a miscalculation, and I can put it back on track the same way I can put my diet back on track in January after a long season of too many holiday treats.  It may take time.  It may be difficult.  Ultimately, though, it’s up to me to settle in my current cage, or bend the bars and get out.

Sure, when I get to feeling this way, there are moments when I wish to be free of the constraints my ASD places on me, but then I realize how lucky I am to work in such a unique way. I wouldn’t trade me for the world.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill for the caged bird
sings of freedom

                       -Maya Angelou, I Know Why the Caged Bird Sings (excerpt)

To me, freedom is happiness, and living a full life that is balanced somewhere between physical, emotional and mental needs.  It’s a tough spot to find, and I know I may never dial in on it completely, but sometimes happiness is in striving rather than attaining.  Sometimes working at it is just “good enough”.  And I’m okay with that.

What about you?  What cages do you struggle with?  What helps you find happiness?

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3 thoughts on “Singing for Freedom, Bending the Bars of the ASD Cage

  1. “To me, freedom is happiness, and living a full life that is balanced somewhere between physical, emotional and mental needs.”

    Yes, that is a “tough spot to find” and not just for those with ASD issues.

    Don’t you love the serendipity of what life brings you sometimes? My recent post was also about happiness…and how to figure out how to help my daughter, who has few communication skills, communicate what happiness means for her. I also just watched a clip of Wilson floating away in Castaway and cried anew.

    My answer is similar to yours; for me, a balance is needed, a balance between inner and outer lives, nature and the demands of the “real” world. I have to give myself time to get back on track every few weeks after I have allowed those “real world” demands to overtake my needs. This week I am seeing few people, writing, reading and working in the garden. Next week I’m back to the meetings, my family, my daughter and the outside world.

    Thanks for sharing your thoughts. I want so much to help my daughter have a better quality of life. And I struggle often with giving myself the time to make mine better as well.


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