“You must be very high functioning,” she told me. Should I have taken that as a compliment? I didn’t say much, only that the diagnosis was Aspergers, yet even the next day my heart is racing as I think of it. High functioning doesn’t mean easier, I wanted to tell her, but we only had a couple of minutes. Plus it is likely she didn’t want to hear.
Maybe high functioning is easier on the parents. Maybe high functioning is easier on the schools. Maybe. I don’t deny that raising, or caring for, “low functioning” autistic people would be a strong challenge, but…
There are many things about being “high-functioning” that I feel are even harder than being “low-functioning.” Especially for the person who has to live with it.
Most of the people I have known who are low-functioning seem to be more content with themselves, and with other people. Overwhelmed? Yes. Quick to fall apart? Okay. Inflexible/unable to change or alter their course? I won’t deny it. But when they come through their (very real) struggle, it seems to me that they are able to move on.
Yes, they may have left a scene of destruction in their midst, and the people around them may be exhausted – but do they relive that moment of their weakness for years to come? Do they beat themselves up for how “broken” they are? Are they filled with fear and shame every time they go into public for the memory of failures of the past?
Perhaps they do, but I still don’t think being “high-functioning” is easier.
Her response, for example. I had a cousin and a brother who were both noticeably “handicapped.” No one blamed them for struggles in school (in fact, their education was build around their disabilities.) No one blamed them when they couldn’t get a job, or keep a job, or behaved or spoke awkwardly. No one expected more of them than they could give, and all they could give was seen as a blessing – not a failure.
Those same people who cheered them on, had expectations of me that I always failed to meet. Over and over again I failed these people I loved so much until I was so ashamed of my failure, I literally ran away across the country, so I wouldn’t feel that shame (though I carried it with me just the same.) It wasn’t even that they told me of their disappointment – only that I knew they expected so much of me, and no matter how hard I tried, I couldn’t meet it.
What they don’t realize about being “high-functioning” is that the disability is still so strong – only we can see that difference, and over time we learn to put all our effort into fitting it. But we never do fit in, and that pretense never becomes natural, and all of that effort to maintain that act is exhausting. And then above all of that, we continue to fail to meet their expectations, and it hurts so bad – and it fills us with fear, and shame, and doubt, and…
It all becomes too much, until we just can’t keep it up anymore. And they blame us for our failure. And we blame ourselves for that failure. And we feel it all – their disappointment, and our shame, and our knowledge that no matter how hard we try, and what we put into it, we can never succeed.
And maybe, just maybe, if they could see our struggle as they see the struggle of those who are “low-functioning” they wouldn’t be so quick to think it was easier. And maybe, instead of being disappointed at our failure to meet their expectations, they would cheer us on for trying so very hard to live in their world.
This woman has always been kind to me. I am sure she meant well. She has a disabled son… a low-functioning disabled son… and she cheers him on, as she should. She has also known me at work, and how I did there, and felt I was a good employee. So I understand that she doesn’t understand how very hard it is to be a high-functioning autistic person, or why I am no longer working, and have settled on disability (or why I won’t push my son to go out into the world that terrifies him, to overcome the fears that plague us both.)