First, this is my story. This is not prescriptive for anyone else.
Second, I generally try to be quite vague but I have seen so many people judging themselves for having similar emotions and experiences to me, and I want them to know that they are not alone. This is a journey.
Thirdly, I got a letter last week to say they might be able to do an online (video) assessment because Covid19, but they don’t know when that will be, and so I don’t have an official diagnosis. I also might not get one. Because intelligent woman who can use big words and so on.
A few years back, I became really depressed and overwhelmed. As in, I was ready to walk away from all of it, convinced I was never going to be able to be good enough, or be able to get my daughter the support she needed. I honestly thought that my family would be better off if I just left, because that way they might get proper help, instead of me just screwing everything up all the time.
I somehow ended up reaching out to various agencies for help. A few weeks later, when I was feeling marginally better, a case worker from somewhere sat with me in the garden and asked me what was going on. She listened as I spoke. And then offered me a parenting course.
“I don’t need a parenting course. I need actual support. I know how to parent my daughter. It just takes more energy than I have.”
They closed the case because I didn’t appear to be in distress and had refused all offers of help. Apparently. I asked what they meant because I had said all the things. They said that I didn’t sound upset enough.
Thing was, I had been genuinely upset. I was deeply, deeply distressed and found it incredibly difficult to tell this stranger this hard truth, because I was admitting to being an absolute failure. (Or so it felt.) I couldn’t have sounded more upset if I tried because that was what my very very upset sounded like.
It’s not the first time that my tone, or lack thereof, has got me into trouble. Nor was it the last. I was very frustrated because in my mind, ibhave followed all the steps, and been dismissed. I found out about a local autism charity that supports parents of autistic kids, and figured they might be able to help me out.
I’m very bad at asking for help, and so I was really really nervous. I sat twisting myself up in my chair, and playing with my fidget toy (the one I bought for Little Person but had stolen for myself). I finally allowed my mind to go down a path that I had refused to consider for all these years.
I mean, sure, I had autistic traits. But like, not enough for an actual diagnosis. I mean, I had studied developmental psychology for my Master’s degree. Surely somebody would have spotted it, if it was a thing. (The answer to that is, there’s a reason I was so exhausted on the days I had to go into uni. Masking is a thing that some autistic people do.) I couldn’t have autism. I am, you know, articulate. (Except when I freeze up and can’t say a word, but let’s not think about that.)
The lady that spoke to me was very kind. She said that quite often the parents of autistic children realise that they are autistic when they have to start fighting for support for their autistic child.
“Yeah, but I don’t think I have enough traits for an actual diagnosis” I said.
“I’m not a psychologist, so I can’t say for certain but I do think we have a lot to work with.”
And she started asking me weird questions. About being hungry or thirsty or a picky eater (no, no, I only eat hot food, except ice cream). Having conversations (tricky), people getting cross and I didn’t know why (often), pain threshold (high), sense of social justice (well, obviously. Doesn’t everyone?)
So I walked into that meeting afraid and frustrated. And I walked out realising that if I was autistic, then that would explain why my super upset didn’t look super upset. (They asked if I was upset in the meeting. “Yes.” “You don’t sound it. But we believe you.”) That obviously this was a problem, because that made it more difficult to get my family’s needs met. That maybe my communication difficulties were a little more of a difficulty than I had previously thought.
And so we put me on a waiting list. And I went through a rollercoaster ride of emotions.
Because on the one hand, so many things were starting to make sense. But on the other hand, how had I missed this my whole life? Because the more I scratched the itch of “okay, but maybe you are autistic”, the more I realised that there are so many ways that I experience and understand the world that are different to the default. And this mattered because it meant I could stop trying to make myself measure up to an impossible standard. The reason I couldn’t do all the things was I never meant to be able to do all the things.
But also, I have this weird thing were I can spot patterns and trends, sometimes quite deep and embedded patterns. And to me they are blindingly obvious so I can sometimes get a little frustrated that other people can’t see it. Being able to let go of that frustration because I finally understand the difference, and that people aren’t trying to wind me up or be deliberately obtuse, helped my mental health a great deal.
When I’m at home now, I don’t try to make myself fit into the idea I have in my head of what a person in my roles in life should be. I dance with my dog and sit with my feet tucked underneath me. I have fidget toys and noise cancelling headphones. I have dungarees and fluffy socks and a new approach to housework.
And somewhere in the middle of all of this, I have gone from hopeless to a deep seated happiness. I’m still working through the ramifications of things, the ins and outs of how to best understand which bits of my life are impacted by the autism, but I give myself space now to explore these ideas. I don’t shut myself down and try to fit in. Yes, there are days that are hard, there are times when I think that I won’t ever be able to work it out enough. But I’m finding out that autistic Rox is creative, and growing, has friends, and a focus.
I wouldn’t want to be any other way, to be honest.