I have already said this several times over the last couple of years, but many of us on the spectrum need support in some way to be able to live relatively independently. To some it may appear like we can live independently without any “real problems” and this is in some way, I guess, true. In some way, however, it’s completely and utterly wrong.
Once, not long ago, I was at a small family gathering; my mother, my uncle and his girlfriend and me. We talked about my grandmother. She was without a doubt like me, but because they didn’t have a clue about Asperger’s or Autism Spectrum Disorder when she was a kid, my grandmother had never been officially diagnosed.
My uncle and his girlfriend argued that my grandmother could not possibly have had Asperger’s because people like that can live perfectly fine independently – it was implied that someone like me didn’t need the same level of support as my grandmother had. It made me so frustrated because they were wrong. I do need support, but yes, it may not always look like it.
I felt almost embarrassed because I felt I had to be completely clear about the fact that people like me definitely need support and some of us need a lot of it – myself included. Obviously we don’t need the same level of support all the time, we have good periods and bad periods just like everyone else.
It is, however, terribly embarrassing to talk about. It’s not that I am embarrassed I need help, it is that it is not enough to simply say that I need help. It’s never enough. I have to express myself in such pathetic ways for people to even begin to understand and that, I feel, is embarrassing. I hate that it is not enough to just be open and honest about who I am and what I need, I have to freaking whine and complain about it for people to understand that I am serious.
I had therapy with Mr. Flower, if you remember, a while back. He got a new job and he could therefore no longer help me. He called and give me the news, which was both kind and annoying at the same time. I hate talking on the phone. It was nice of him to warn me, but it was such a big surprise I was annoyed as well. Surprises are quite bad for me.
We had talked a lot about whether or not to extend my therapy and had decided together on a plan. I was so happy because the therapy was helping me, for the very first time, and the plan was one I believed in. I am changing my life more dramatically than I have ever done before and we had planned to continue the therapy now, right when I need the support the most.
It was not to be, but he had at least promised to make sure that the next person to handle my therapy would be one suited for me and that he would make sure he/she would be properly prepared to deal with my case. I believed him. Maybe I was naïve.
Over the last couple of months, while I applied for culinary school and was accepted, I have been constantly communicating with the centre in charge of my therapy. I have been contacted repeatedly on the phone by people who clearly knew nothing about my case, some assumed I had never had therapy there at all. Every time I had to explain the same things and every time they would promise not to make the same mistakes again.
It was many little things, like I’d ask them not to contact me by phone, but by e-mail. They would promise to do so only to call again soon after. To me, those little things however, they can break me completely. In early December my future therapist called me. I’ll call her Miss Donut, because she kept going in circles when she talked. Miss Donut called because she wanted to schedule a new meeting since I had cancelled our first two meetings.
I had called to cancel (because cancellations are only done by phone, of course. Annoying, but acceptable) and had explained that I had influenza. I had asked to re-schedule some time in January 2021, but had asked to not decide on any dates until I knew my schedule at the culinary school. I explained how afraid I was to change my life like this and also, how important it was for me to get help during the change. They promised that we could wait until some time in January with scheduling the therapy and that they would make sure my future therapist, Miss Donut, was told about all of it.
Miss Donut did know about it when she called, but she kept insisting that she needed to put me on her schedule if I wanted help. She didn’t listen when I told her I couldn’t handle the pressure of deciding on specific times and dates for therapy before I knew my schedule at school.
You may not understand why this is important to me. This last month has been increasingly difficult for me. I have never made changes to my life like I am doing now. I am so very bad with social interaction and soon I have to start all over; new school, new courses, new teachers, new people all around me, new area, new everything. Only my home stays the same.
I am struggling to keep it together, constantly telling myself that this is a good change and that I can get through it without breaking.
My filter is stretched thin, however, and it doesn’t take much to break me right now. My senses are more sensitive than usual, I have difficulties eating and struggle to get enough water every day and I can’t sleep at night. These, along with several others, are all “normal” symptoms of change. I always feel like this when things are changing around me.
I know I can get through it if I take good care of myself and not planning when to start therapy was something I needed to not feel worse. Therapy isn’t easy for me, I need to be mentally prepared before I go. I need to be ready to open up. If I set a date, I can’t just change it if I don’t feel up to it. I prepare myself from the moment I know the time and date. I have to do that to handle it.
That’s the reason I needed Miss Donut to understand that I couldn’t possible set a date for therapy yet, because I didn’t know my schedule at school. I was terrified my therapy would somehow collide with starting school and force me to chose between the two. It would be a choice I would not be able to make. It would very possibly be a choice that would break me.
You see, I don’t know how I’ll feel when I start school, but I do know this; I will be fighting to get through it. It’s a lot of change all at once. Miss Donut simply didn’t care or didn’t understand when I told her these facts. She insisted and in the end I accepted a time and date for our first meeting, simply because I could not continue talking to her without a major panic attack/ meltdown.
I have been so worried about whether or not I had to cancel, that it has made this period of change a lot worse than it needed to be. I said yes in part because I was afraid of losing the little access to help that I have. I need help, as I told you in the beginning of this post, and getting help is a fight in itself. I didn’t want to have to go through the years of fighting it took for me to get the help that I am getting now.
The problem is, the help I am getting now isn’t the same as I was getting when Mr. Flower was working there. I was hoping Miss Donut would be helpful too, but neither the centre nor Miss Donut have actually been helping me these last months. At this moment in time I need support more than ever before, but the help I am currently getting is worse than no help at all.
I suddenly realised that it is not the first time. This has happened many times before in my life. I have accepted help that was more damaging than it was good simply because I was afraid of losing access to help – not the help itself.
It’s not just people in an official capacity, sometimes friends or family try to help. They almost never understand the support I need, however, and often end up making things worse.
It’s like they hear what I say, then completely disregards that, and do whatever they themselves think I need. I then accept their misguided help in part to be polite, but in part also because I am afraid they’ll start thinking I don’t need help at all and then won’t help me when I truly need it.
I am grateful to get help, but you know what? I don’t think it makes any sense that I continue to accept help that only makes life worse because I hope to get the help that I need, but know I’ll never get.
Miss Donut called me this morning because she needed to cancel the meeting due to Covid-19 restrictions. I had expected that, but it produced a meltdown. I completely broke down while on the phone with her and cried and had a panic attack. That made her understand a little.
Months. I have spent months talking to these people explaining the same things over and over again and all it took was a panic attack and suddenly they understand. Why do I have to break down for people to understand? Why are my words not enough? Why do you always have to push me so far that I cannot bear it?
Now, all of a sudden, the things that were “impossible” before became possible. I get to start my therapy when I am ready and thus, I decided to give Miss Donut a second chance.
Before she called I had made the decision to call the centre and decline any further therapy. I somehow finally understood that accepting the wrong help is worse than not getting any help at all. You know why?
Because I deserve better. You do too. We all do.
The wrong help only makes life even more of a struggle. I can’t help but wonder if I actually won’t need as much support in the future as I do now, if I stop accepting the wrong help. The idea almost makes me laugh.
It’s very possible, though. The amount of anxiety and stress that accepting the wrong kind of help has given me over the years is impossible to describe or explain. More often than not does that kind of help eventually lead me to meltdowns. The physical effects of a meltdown lasts for days after.
The reason I decided to give Miss Donut a second chance is because I know I need help. It needs to be the right kind of help, however, and if it doesn’t work out with Miss Donut, I will leave. I won’t accept the wrong kind of help.
Don’t get me wrong, the right kind of help is not always comfortable or easy, but necessary. The wrong kind of help is unnecessary and makes life even more of a struggle.
I think, sometimes it can be hard to tell the difference between the two, but just having made the decision not to accept the wrong kind of help has already made me feel better about myself and my situation. I cannot do anything but try my best to sort through whatever support is offered to me in the future and refuse all the wrong kind of help. Hopefully, I will finally get the support I actually need, but even if I don’t, at least life will still be better than it was.
Now, a funny thing after I finished this post and so I’m uploading it quite a while after I wrote is. Miss Donut decided to cancel my therapy without talking to me because, apparently she felt it was better that I re-applied at some distant time in future when I was really ready.
Of course, she only proved to me that she was the wrong person to help me. Problem is, because she didn’t talk to me, she had no idea that I can’t re-apply. I spent two years trying to get funding for the therapy approved with my caseworker, because I don’t have money to pay for the therapy. Now, I lost the funding and can’t re-apply for the funding – it could only be extended.
I guess, technically she’s right. I can apply to get the therapy again, but since I can’t pay for it I can’t get therapy at their centre anymore. Even if I were to stop my therapy there, I wish I had been asked if I was okay with it – especially since Miss Donut was the one talked me back into getting therapy at their centre.