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1. Today was my first #ActuallyAutistic assessment appointment with General Psychiatry services. The appointment didn't really go how I thought it would.
2. Bit of background - I'm 38, currently self-dx and have a dx son. I've been lurking on Twitter for a good year or so, following Autistic activists whose message resonates with me. I also work with autistic people and have done for a number of years.
3. Like many people, I initially learned about the deficit, medical model of autism. This form of autism also has a stereotypical, recognisable appearance. You know the one I mean - Rainman type stuff.
4. Male, young, non-speaking, white etc etc. Being a mixed race, round-assed, chatty woman, I never saw myself in this model.
5. All I knew is that a felt “different” in ways that I didn’t have the words to explain. I had problems where other people didn’t and people had problems where I didn’t.
6. I remember feeling my whole life like I’d missed a memo that everyone else had read, and that often made me feel scared and angry.
7. I’d go out of my way doing things to make myself feel safe – escaping into books, counting letters and patterns in words and sentences, repeating the same words or song lines over and over again and making rules, structures and rituals for myself: all in secret.
8. They helped a lot, but I still had angry outburst at home – mostly directed at my sister and mum. I felt like I was in trouble at home a lot – I was always accidentally breaking my parents’ lovely ornaments and guilt often came out as me storming off.
9. Eventually I learned to keep my anger inside, but it’s still there and I can’t always control when it comes out.
I mean there’s loads more but that’s for another day.
I mean there’s loads more but that’s for another day.
10. So, in 2016 I was sitting at my desk when a team member sent round an email about autism in women and girls. It was a collection of excerpts from books and articles (how I wish I had saved that email!) I read it, and I remember the room becoming blurry.
11. I had to discretely leave my desk and hide in the toilet until the room came into focus again. It. Was. Me. It described the parts that I put so much effort into hiding.
12. It described “Masking” – something I had never heard of before but instantly recognised as something I’d done since I was in primary school. I was hooked.
13. I spent the next couple of years researching. I learned about “stimming” and sensory differences. I learned about communication issues and emotional regulation challenges. I learned about Meltdowns. I learned about logical thinking and a strong sense of justice.
14. I learned about creativity, musicality and intuitiveness. I learned about attention to detail. And I found myself again and again and again.
15. So in 2019 I decided I was ready to pursue a diagnosis. I am lucky that I live in a place that I can do this for free if I am patient enough for the process. Why DX at 38? There are a few reasons:
16. - When my son was being assessed, on hearing a bit of my background, one of the consultants encouraged me to get a referral. This was a big validation for me, I felt seen.
17. - It would be great to have an answer that explains all my “weirdness” – in fact I am not weird! I’m a normal, autistic woman
18. (I use words like “weird” and “normal” with a pinch of salt, I know these terms are imaginary and nonsense. However, I crave a sense of belonging. Also I don’t use the term “woman” in an exclusionary way, that’s how I identify.)
19. - Along with belonging, I suppose I crave a sense of forgiveness. I’ve messed up in many, many ways and I carry a lot of guilt and shame. For some reason, the reason of “being a fallible human being” isn’t reason enough for me to forgive myself.
20. With this diagnosis I can make friends with some of my demons.
21. - As I’m getting older, I’m finding my tolerance for stuff decreasing. I get tired more easily. Although I miss my colleagues a lot, a year of WFH has shown me how much working in an office takes it out of me.
22. I’ve gone from constant headaches and painkiller popping to nearly no pain. I like the hubbub of an office, I like people’s sounds and smells but I guess my brain struggles with it. So I suppose a diagnosis now will give me bargaining power at work in the future if needed.
23. - Mostly, why the hell not? It’s my personal journey through this existence.
24. So, after my first set of paperwork got lost and waiting for one year and 2 months, I was amazed when that letter popped through my door inviting me to an appointment. I tried not to imagine what the appointment would be like too much.
25. I can really mess myself up by making a script and then feeling lost when the other person doesn’t follow it (you know, ‘cos they don’t know it’s there) so I tried to keep my mind clear. I really did try.
26. So, I was sitting by my phone at 10.30, waiting for my appointment time. The phone didn’t ring. I waited a bit more. I was just getting ready to call the switchboard when my phone rang at 10.42, asking me if I had received an invitation for a phone or video appointment.
27. When I said phone, I was told that I should have got a video invitation, and could I switch over? Honestly, I prefer video calling to phone calls, but this was a terrible start. I had prepared for a phone call. The arrangements were changing and the call was late to boot.
28. However, I logged onto the video call and we started talking. Sadly the quality was so poor that we had to use a phone call for audio and the video on my computer – again, not great.
29. So, the consultant asked me why I wanted this diagnosis. I spoke a bit about the reasons I wrote above. And how after learning more about autism away from a “deficit model” and how it affects women I felt I was ready to start the process. The consultant informed me that:
30. “There was no right or wrong time” (well, there is for me) and that “that there were no such things as autistic or ADHD traits, it’s more about being at extreme ends of things and if it causes problems in your environment”.
31. He also advised me that I should consider whether or not to get a diagnosis as it might be a “disadvantage” for me.
32. I know I said I tried not to script, but of course I did. The consultant had gone so spectacularly off-script and I was so caught off-guard that it didn’t even occur to me to ask what the heck he meant. Also, it can take a while for me to become aware of my emotions.
33. My thoughts are a high-speed train, my emotions are a mule. I didn’t know how I felt yet.
34. Also, I didn’t agree with him! My autism isn’t just about my problems, or my environment. My autism is part of me, it’s everywhere I go.
35. It’s there when I’m worrying the world is going to end because someone changed our plans with no notice, and it’s equally there when I’ve listened to a song with lots of bass at full volume for the 7th time, goose bumps and shivers and enraptured.
36. So I had quite a lot going on in my head, which stopped my brain from forming the question.
37. Then came questions like “tell me about your childhood” and “how are you with small talk” and “how were you with friends?” I get it – he’s looking for “evidence”, but it was only the “problems” and “bad” stories that he was interested in.
38. I feel bad for poor Young Laura, I gave her a good slagging this afternoon.
39. I did not answer these questions well. When my appointment letter said “phone appointment” I thought it would be more of a chat to explain the process to me. I didn’t think we’d go straight into diagnostic chat on the first call so I hadn’t prepared accordingly.
40. I had no script, I had no prompts, no important topics that I wanted to include. When he asked me “tell me about your special interests” I drew a blank because I didn’t know if he meant now, or all the ones I could remember.
41. (Also, some of my special interests aren’t exactly something you talk about over afternoon tea and I just couldn’t bring myself to tell them to a stranger).
42. So that was pretty much it. I was advised that it would be useful if I brought a loved one to the next meeting, but I should really think about the diagnosis.
43. Is it wrong that I was hoping for more? Maybe I’m being naïve I was hoping for a message like “I can imagine how long it’s taken you to get here – welcome!”
44. I kinda got the impression that I wasn’t “suffering enough” in the Dr’s eyes for a diagnosis, but he doesn’t know what I’ve been through to get here!
45. I felt that there were last minute changes that were outside of my control that affected my ability to talk about my experiences, so in many ways it was a bit of a wasted opportunity.
46. It’s very hard to spill your guts and deepest secrets to a stranger, and I failed to do that today. And I may only get one more shot.
47. Apologies for the long thread. This is my first thread so please be gentle with me. I'll let you know how the next appointment goes...
@AnnMemmott @commaficionado @lilririah @AutSciPerson @SNeurotypicals @autistictic - hope it's ok to tag, still learning the etiquette
