Autism: Really Wanted the Help

05 May

It has been four months since my last appointment, and is another two months until my next. From the struggles I am having with it, however, I am beginning to understand that going to see her does not in fact help. I really hoped it would.

When I first went to her, I was full of anxiety… panic even. But she acknowledged that she did believe I had Asperger’s, and gave me the diagnosis. She told me she would help. She heard me express my past troubles with medication, and decided to try something else, and start on a very low dose. It was hard to go and talk to her. It was hard to talk. But I was thankful that someone had finally heard me.

Then at my next appointment, she heard me again – and though I didn’t ask for it, and though it terrified me, she took me off of work and put me on medical leave. It was something that had to be done, and if she hadn’t seen that, I would have fallen apart at work and lost my job anyway. It could have been so much worse.

I needed to not work. In fact, I really needed to not work all of my adult life – and school in my teen years? That was bad, too. I needed to not be working, and really if they think about it, people should be amazed that I held on as long and as well as I did (even if it looked like failure to them) instead of being disappointed that I couldn’t keep going forever. But they don’t see inside of me, and none of them knew – not really. Hardly at all.

So it was good that I went to her. Because I did, I was finally seen. I was diagnosed. The multiple challenges were put into words so maybe people could know, even if they couldn’t understand, that the very act of living is often overwhelming for me – and working on top of that? Impossible to keep up.

At least they could know.


And she referred me to my therapist – and though I believe I am very frustrating to her (since she gives all kinds of good ideas – which I have already tried, and found not to work; or hadn’t tried, but can’t seem to figure out how to work with them, or…) I really do believe she not only hears me, but remembers me, and cares. I also think that though she is not Autistic herself, she really understands what she is talking about.

I don’t visit my therapist anymore – but that is because she saw how anxious I was, how hard it was to talk, and how much better I am at communicating through writing – so I email her instead. See? She understands.

The doctor tried. But she doesn’t understand Autism – so she tried to treat with medication. I did very much hope that she would find something that would work (and not make me sick) but the more she tried, the more obvious it became to all of us that my body just can’t handle such things.

Even then she said she would continue to help me, though I could not take medication – but she seemed to be lost on how to do that.

My next appointments became harder and harder – and in fact, she tried to stop them altogether. “I don’t think we need to book another appointment,” she said, “if you are having trouble, you can call.”

Ummm – no I can’t! Phones, remember?

So I told her I wouldn’t call – not even if I needed to, and she booked the next appointment six months later. And each appointment became harder.

At the last, her suggestion was that I find work… it didn’t make sense – she took me off work because my anxiety was so severe. I did get diagnosed. My assessment and paperwork was enough to get me long term disability without question, and several other types of support (which I haven’t figured out how to use yet – I think I need support to figure out how to use the supports, but I don’t have that.)

Yet nothing has reduced my anxiety, save not having to work (and even then I struggle a whole lot of the time – as you might get from reading my blog.) So how can her solution to my struggles be to take me away from the only thing that has helped?

And the truth is, she doesn’t seem to remember me. She doesn’t seem to know me. She doesn’t understand.

So for months I have been upset about that suggestion, and the fact that she dismissed the positive things I was doing in my life (like learning Spanish, playing the keyboard, studying Latin and Grammar, and writing my blog, and…) For months I struggled even to get back into several of the things she ignored, and some I have never been able to return to. For months after that visit, I struggled with really bad depression.

To be honest, that appointment made me suicidal for a while – I mean, if nothing I do that makes me feel good has any value – and the only way to make my life worthwhile would be to find work, which caused me such anxiety that I don’t want to live – what is the point of living?

It took me a long time to settle back into a good routine after that. Is it any wonder I am terrified to return for my next appointment?

I think next time, when she says she doesn’t need to book another appointment, I will agree – and really hope that isn’t reflected as me refusing help, so I lose the few supports I do have. I mean, I really, really did want her to be able to help me.


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One response to “Autism: Really Wanted the Help

  1. threekidsandi

    May 5, 2017 at 5:45 pm

    Maybe you could show her this post instead.

    Liked by 1 person


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