I will continue to outline the research I did in order to prepare to ask my GP for a referral, but I am a little behind schedule, because I got a little overwhelmed by a busy day going through London, but I’m almost recovered (in the mean time, I’ve participated in the #therapymeans as part of #autismmeans HT conversation on twitter- I’m continuously happily surprised by finding this community of people who “get me”. I’m @hoistmeout).
For the time being, this is a post appointment dump (like my post therapy brain dumps, they are uneditorialised, not stylised, just regurgitation of what happened) of my GP appointment.
The night before, I slept very little. Logan, my very patient boyfriend, had mentioned a few of my traits and specific examples (I’ll elaborate more in a different post) and offered to go through the points that I wanted to make in the morning when I woke up. I am so grateful for this, and I benefited from this so much. I won’t gush too much here, but I am very lucky to have someone who is so encouraging, who knows me well enough to see my weirder traits even if I try to hide them, and helps me accept them as he does.
My mother drops me off near the GP surgery. As I walk, I rehearse my lines under my breath, I recall facts, numbers, statistics; this feels like a school exam.
I stare at the oranges and reds of a picture of a flower that I can see from the waiting room. Two strangers talk to each other, even though they’ve never met, and I have an urge to correct one of them who thinks that food poisoning can’t kill you, but as I try to figure out how to do this, the door opens, and-
This must be Dr P, the GP. She must’ve mistaken me as my mother, who has come in a few times recently worrying about my sister. My sister has recently been referred to CAMHS for suicidal ideation, gender dysphoria and self harm, and my mother and I think she might be on the spectrum.
I go in with two objectives:
- to get a referral for a new therapist
- to get a referral to autism diagnostic services
1. Referral for a new therapist
I realise that I’ve been silent for a few seconds too long and staring at Dr P’s black polka-dotted dress (I’m wearing one too, so I wonder if she’d noticed it and if black polka dot dresses give off a certain impression to people), when she asks ,”what can I do for you today?”.
I’m glad that T has written a letter, because it enables me to refer to it, when I say that I want two referrals, one for talking therapy, and one for-
“Well, we can get that one out-of-the-way first” Before I get to my second point, Dr P interrupts me. She gives me a number to call to talk to the local talking therapy services.
“uhh uhh um… thank you. I mean- yes. Well.” I’ve lost my flow because she’s interrupted my rehearsed script. I’m glad that I’ve created a mental decision tree as well as a rehearsed script, because I remember to ask/shout, “It isn’t automatically CBT is it? ummmm….”
She seems a little taken aback, but the letter from T mentions that I haven’t responded favourably to it in the past, and she reassures me that there are other kinds of talking therapies that they offer, but that I would need to call them to ask about it.
She asks me if I’ve had bad experiences of it, and I, umm and ahh, tell her, actually, that it brings me to my second point.
2. Referral to the specialist diagnostic services
“Is it possible to have a referral to get a diagnosis for autism spectrum disorder? I know there is a specialist diagnostic service in [name of close town]” I spiel off my script, without a breath, so she doesn’t have a chance to interrupt this time. “I did a lot of research [I open my box file, full of notes, full of research, from blogs, official government bodies, peer-reviewed journals, and charities, healthcare providers. (pictured below)], and umm uhh, yeah. please.”
Dr P: “If you could tell me about that, that would be good because I don’t know much about it. It’s something we normally diagnose in childhood.”
I am glad for my research now. At the top of my box-file, I have some things I have printed for her.
- a referral form for that specific diagnostic service (I googled “[my county name] county council autism diagnosis” and found the nearest diagnosis service near me. On their page, they had a referral form for the GP to fill in)
- this information sheet (the link is a pdf download) from The National Autistic Society(NAS).
As I hand them over, I ramble on about how I don’t know what would be useful to her, and about how I realise it’s not normal for patients to do this much research, that I have to confess that I looked over the NICE guidelines, that I studied neuroscience at university, so I had a lot of resources available to me. I let her know that I studied at her alma mater, in hope that it would convey that I wasn’t as stupid as I sounded then (no cohesive sentences, repeating myself, stuttering, fidgety flustering).
She asks me if I have finished my degree and graduated and what my plans are. I am already half-prepared for this, as “problems in obtaining or sustaining employment or education” is one of the possible criteria for a referral according to the NICE guidelines
“Well, you see, I didn’t. I had to interrupt my course, and leave early. Regarding my plans, I don’t really know, and this is part of the problem. I work part-time, in a shop for minimum wage, and I, uhh, I kind of have a difficulty with all of this.”
“What do you want to do?” Dr P gently asks.
“Well… I have no idea. I would like to work somewhere, I’d like to be able to earn a full-time salary somewhere. Well, this is part of the reason I came here, because… because…”
I am distracted by some prescription forms that are on her desk, but get back on track. I tell her that whatever I do, whether I take another qualification, or go to finish my degree, or even work in a corporation in an office, that I would like to ensure that I can have provisions from the outset, so I don’t waste people’s time or resources. I tell her about how I had support for depression in the last year that I was at university, from the disability support service, but that in order to take advantage of it, I got overwhelmed, and that it took so much out of me in order to request it in the first place. I described how I had to interrupt the course a few times and repeat years, because I couldn’t face lecture theatres. That meetings to help me were draining too, even if the support advisors were great, because social interactions, even appointments, like this doctor’s appointment, are difficult, that as I spoke, I felt like I may burst into tears at any moment, that I had rehearsed this interaction, even if it didn’t sound like it.
She asked me if I found things more difficult as an adult more than when I was a child. A cue for me to pull out the relatives questionnaire
from the AAA
She didn’t really read it, but I did flash it up (all highlighted and annotated – my mother filled it out for me the evening before), as I used it as a prop, to explain that it wasn’t really an issue when I was a child, my mother agrees that I was always “a bit different”, and that it’s a point of interest, this whole females on the spectrum thing, because often the autistic females who are verbal, and have no learning disabilities, are not referred as children, because they are often less “disruptive” in the classroom (which can be why boys are referred, or at least used to be the reason – now guidelines encourage health professionals to keep an eye out for signs in all infants so that early interventions can be administered). I’m starting to launch into the various works of researchers and clinicians who specialise in the female presentation of autism of Francesca Happe, of Judith Gould, and realise that I’ve been warned by Logan, by T, and by my mother about going off on this specific tangent.
“I’m so sorry, that wasn’t the question…. what was your question?”
Dr P: “Have things gotten harder for you as an adult?”
“Oh, uhh, yes, in the sense that things are not laid out in front of me anymore; there is no certainty. Not just in terms of career, or life plans (this is definitely something I struggle with – that there are no set structured pathways), but also in day-to-day life, the analysis paralysis, the difficulties I have with infinite choices in the mundane and trivial.” I think about the mental decision tree that I prepared for this appointment and how I am terrified unless I have thought about all the different scenarios, and possible outcomes, in everyday interactions etc.
I tell her about how other people have specifically told me that they agree that I am not very good at being a grown up. That I seem to be able to master specific skills (e.g. culinary skills, household skills, navigate around new places, picking up languages, etc), tick boxes of attainment (always having above average to full marks in academic grades, praise for papers that I write, a place at a good university), researching new information and gaining knowledge. But somehow, being “put together” for extended periods of time and to function even at a basic level, always seemed near impossible.
And it’s not through lack of trying! The university course was one way I tried to understand the human mind, but also my bulging bookshelves, and boxes of books that are about how to function as an adult, how to make conversation, not just the text books I had for academic neuroscience, but books on etiquette, classics like Dale Carnegie’s How to Win Friends and Influence People
, relationship self-help books, and books on body language that I’ve been reading since I was a pre-teen (which isn’t normal, apparently). That I used to observe conversations, eavesdrop stranger’s conversations, and repeat certain lines later, that I memorised lines and mannerisms from films and TV shows.
And still, it seems more difficult than it’s meant to be.
Dr P seems convinced. She tells me that she wasn’t aware that this diagnostic service nearby was available, and it’s useful to know, just in case other patients asked. She starts saying that she’s happy for me to fill in the form, and she can sign and send it off.
I panic and tell her that I have a problem with this – there is a set of screening statements that I have to indicate if they fit or not, at the front and I didn’t know how to answer. Logan went through them with me, to let me know how I appeared from his end, but I wanted to be sure that I was answering these correctly. I started my rant about how it is cruel irony that the statements are vague, and rely on you to compare how your mind operates to others’, considering that two of the major characteristics is an impaired theory of mind and extreme attention to detail. I’ve posted a photo below of the questions; if anyone else on the spectrum sees this, please tell me what you think about these statements.
She stops me and tells me that we will fill it in together. I tell her that I can answer “yes” to a certain degree, but I know that in certain situations they do not.
Dr P: “Do you find social situations confusing?”
I don’t understand what confusing means in this context, and I need a definition of social situations. Dr P circles “yes”, because constantly analysing the situation means that I don’t fully understand.
She gently talks to me and guides me through until I have ticked 9 out of 10 (“We don’t need to tick all of them.” She says. I think “that’s not the point though”. I don’t want to game the system, I just want to know, to confirm my hypothesis that I fit the profile).
We talk about why I want the diagnosis again, that I would like access to local services that could help me, special therapies that might help, or any entitlements in the workplace, so that I can actually become a contributing member of society. Even if these aren’t available, I can obviously do my own research and find self-help books and resources, but I would really like to have a confirmation that I am on the right path.
Dr P: “I think I’ll send a little letter as well, I just want to make sure I have a feel of things, are you on any medication?”
“I’m on escitalopram, 20mg”
“Do you think it’s helped at all? Was it originally prescribed for depression?”
I don’t know exactly how much it has helped, because I don’t know how much I can attribute to the medication. I tell her I definitely feel better than before I took it, but they did increase my dosage last December, because I was very depressed.
“Has anyone else considered, professionally, that you may fit the diagnosis?”
“Apart from my therapist, no.” I tell her about how we started looking deeper because my sister started struggling with her mental health recently and she fit more of the known signs as a child(the autistic savant-type that’s sometimes profiled in the media, the unusual manner of speaking, hyperlexia, meltdowns, inappropriate remarks, sensory sensitivities, unusual preferences in food), then Logan, had noted “darling, I don’t want to alarm you, but some of these sound a lot like you” when reading the details of the traits. That it was just another condition that I had to revise the main point for, to take an exam for university, that I was familiar with the DSM and ICD criteria, but it wasn’t until I started reading first hand accounts of autistic people on Twitter
, and other blogs, that I realised that they really did fit me.
We talked a little more about what I was doing with my life at the moment – I don’t know, and if I couldn’t go and finish my university degree – no, it’s something that has been a hard decision to make, that took a long time to make, and it’s not something I can do right now. That whilst it’s lovely that I’m living with my mother, that I’m being looked after, and fed, I feel like an absolute failure that I’ve gone back to living there, unemployed, at 26, when my peers have finished doctorates, getting married, having children, having successful careers. I want to, at least, have some semblance of independence, of my own space, doesn’t have to be luxurious, even the smallest of studio flats will do.
Dr P stops me to summarise that: I should call the talking therapy number, that I have a lot to sort out, but that I’m “on my way there”, that she’s going to send my referral form off.
I stare at her, again, a couple of seconds too long, before I realise that the appointment has ended.
“Take care of yourself,” I hear her say, as I grip the door handle on the way out. “And well done today.”