There are many different paths to arriving at a professional autism diagnosis. Some people are already convinced of their autistic identity, and seeking a diagnosis is simply to validate and confirm what they pretty much already know about themselves. Others may go into the process much more uncertain, on the fence and perhaps confused by the potential overlap with other conditions. They may have done little research (and chosen to do this because they feel too much investigating could potentially bias their own perspective) and be very much relying on hearing a professional’s interpretation. For others still, a diagnosis is sprung on them and all of the associated processing has to take place in the period after. For me, it was a mix of the first and second scenarios. It was very much a case of growing realisation and commitment whilst going through the process itself. This wasn’t because of what I learnt from the professionals along the way (they didn’t say much I didn’t already know really), but because the reality of the situation spurred me to do increasing amounts of research, develop my self-understanding and to take the possibility increasingly seriously, until I reached a point within a few weeks of my diagnostic appointment where I was almost entirely certain and just needed that external confirmation to remove all doubt and make it official.
In this post (along with the next couple), I discuss my experiences along the autism diagnostic pathway. As with most things concerning autism, experiences are highly specific to the individual, in this case influenced by my age, personality (which affected how I went about it and responded) and where I live (diagnostic provisions are still quite variable, especially for adults). The diagnostic pathway varies considerably from person to person, place to place, so this is by no means a representative picture. It reflects the experience of a 20-something female living in a large city in the UK where there happens to be a specialist autism diagnostic service for adults. I count myself as having been very lucky with my experience, but unfortunately it’s all too common for people to face significant hurdles to getting a diagnosis, including lack of understanding and misdiagnoses (especially for females), expense, long waiting lists, miscommunications and general uncertainty or a complete lack of provisioning. Despite the potential difficulties, if you feel an autism diagnosis fits you and would be of benefit in your life, it’s you’re right to seek a diagnosis and it’s well worth trying (and keep on trying) for where it will hopefully lead, even if it takes years. I’d love to hear about other people’s thoughts and experiences around diagnosis in the comments below so we can gather a range of perspectives.
The diagnostic pathway
Stage 1: See your GP
My first step was to talk to my GP about autism… except for the fact I didn’t actually mention autism to her at all, yet still managed to get referred to where I needed to go. I was apprehensive about mentioning the A-word. It would have been the first time uttering my suspicions to any living being whatsoever (besides my cat). I was prepared to do it, but decided to start off in a more indirect way. I think I was interested in seeing whether the GP might think of and mention autism spontaneously in response to a couple of the things I was saying. I mainly talked about my significant and worsening noise sensitivities and a few physical health complaints all of which she seemed to take quite seriously. She asked me how I was feeling in myself, I said “fine”, but she didn’t waste time in referring me to the community mental health team (although I didn’t know this is where I’d been referred to at the time). It might seem a bit odd or annoying that autism is dealt with in a mental health setting. Even though lots of autistic people do have co-morbid mental health conditions, autism is not a mental health problem, but this is just how things are done, and where autism best fits in the way health services are currently structured. In hindsight, I think she mainly picked up on (and exaggerated) some changes in diet and weight that I’d experienced as this was mainly what the CMHT quizzed me about when I saw them.
My experience is perhaps a little different to most, in terms of being quite indirect, but I still managed to end up where I needed and wanted to be. There’d been no need to mention autism to progress to the next step, and being nervous about doing so meant I didn’t bring it up at this initial stage. However, I think it may have been good to mention it to the GP: it might have made things a little clearer and faster in the second stage (although it still ended up going remarkably smoothly for me). It’s also the case that indirect styles can suit autistic people who are feeling overwhelmed and perhaps going about it in this way made the whole thing less scary and was what actually enabled me to get through the initial stages of the process.
Quite a few undiagnosed autistic people (perhaps even the majority) are already involved in mental health services, and their first step would obviously be to mention autism to their psychiatrist/psychologist/therapist. Given my own experience, I can’t add much about the potential responses of non-specialist professionals. From what I’ve heard it seems to be quite variable, depending on each professional’s level of autism knowledge as well as their personality and how much time they actually have for listening to and seriously considering the concerns of the people they’re trying to help. Some may have an understanding of autism that extends to the adult and female-type presentations, including an awareness that superficial external appearances may not reflect internal experiences, others may be less well informed in this way. I’d recommend taking a page or two of clear, well-organised notes on why you think you might be autistic. It may also help to do a bit of research online – the advice on adult diagnosis from the National Autistic Society is a good place to start. Professionals – especially those you’ll encounter at the primary stage, who probably don’t know a huge amount about autism – should never dismiss your concerns and be willing to refer you onto specialists who know more. Just make sure you come prepared. Bring someone with you if you think it might help your case or communicate your concerns. And don’t give up if you hit road blocks.
Stage 2: Mental health services
After a 3 month wait, I met with a couple of community support workers to discuss the concerns I’d raised to the GP – none of which I’d specifically related to autism in any explicit way. I adopted the same approach as with the GP: I decided to wait and see (rather naively perhaps) what questions they might ask, their reactions, whether they might bring up autism of their own accord. At this stage, I was still very uncertain and overwhelmed by the whole thing. I couldn’t quite believe in myself that I might be autistic. It felt somehow quite absurd, even though it made a lot of sense whenever I thought about it logically which was why I was doing this. I also worried about being heavily questioned, laughed at or dismissed in some way. I didn’t want to be wrong about myself, or to have this potential explanation taken away from me. Also, I knew that mentioning autism to another human being (even a stranger) would suddenly make the whole thing so much more real, something existing in the real world and not just a possibility floating around in my head that I could pretend didn’t exist for a while if I wanted. So on the one hand, I feared that the possible explanation of autism might be taken away from me. On the other hand, I was worried about my potential autistic identity becoming and feeling very real through talking about it to people in real life. I wanted it to be real, at the same time I didn’t want it to be real. I think really I wanted it to be real, but was just scared.
Mainly I still had a LOT of doubt about my suspicions. This was mainly because my knowledge of autism was still not huge, far better than the average person, but nothing compared to where it is now and still could be in the future. This doubt would have been greatly alleviated if someone had mentioned autism to me organically, rather than having to bring it up myself. But this was a rather unrealistic thing to hope for and despite mentioning a few autism-related issues (sensory sensitivities, social issues), it didn’t happen. And so towards the very end of the appointment I brought up the possibility of autism up directly. There wasn’t time to discuss much in detail. The support workers asked a couple of follow-up questions (like whether I find it hard to connect with people, what it would mean to get a diagnosis), then time was up and they left it there and said they’d discuss it with the doctor. For whatever reason, at the time, I didn’t think it would amount to much. I think I also found it very hard to read their reaction – whether they were surprised, curious, convinced or whatever – to me they just seemed quite blank! So I was not much the wiser…
Stage 3: Specialist autism assessment service
I sort of forgot about the whole thing for a few weeks, until I got a letter in the post form the CMHT asking me to fill in the AQ-50. I completed the screening test, scoring about 38 and promptly sent it back to them. Then I received another letter saying I’d been referred to another CMHT, but I was unsure about why this was or to whom I’d been referred. It took another couple of months before I then heard from the new place I’d been referred to and I was completely shocked and scared, yet very excited, happy and grateful to realise it was a dedicated autism assessment service for adults. I’d had no idea up until that point that such I thing existed (and it hadn’t until only 3 years earlier). The letter invited me to attend a pre-diagnostic appointment in a months’ time.
I didn’t do a great deal of preparation for this appointment, at least not by my standards. I think I was still very much in a speculative stage, not entirely invested for some reason, and perhaps not fully considering what a diagnosis might mean for me. The specialist I saw started by asking me why I was seeking a diagnosis. (I don’t really get why professionals are in the habit of asking this – isn’t it self-evident that it’s because the person thinks they are autistic and if they think this it makes sense they’d want professional confirmation to know for sure?) I just said I’ve noticed quite a lot of autistic traits in myself and we launched into a discussion on these. I’d prepared a couple of pages listing my main autistic traits, which she seemed to find interesting. It helped to have the notes to hand as the specialist read through them then and there and asked me some clarifying questions about each point which gave the discussion structure. A big concern I had at this stage was that they preferred parents or other close relatives to be involved in order to help with the developmental history taking, but I was adamant that I preferred not to tell anybody at this time (I’ll explain more about this in the next post).
Again, I had difficulty reading the specialist for signs of whether she thought I might be on the spectrum or not. But in hindsight, I think it was fairly obvious she thought I was. She went away at one point and came back with a whole bunch of leaflets and asked if I wanted to be referred to a couple of autism advice/support services… a pretty clear indication really! Still, for some reason I didn’t pick up on this at the time or even in the weeks after. Perhaps I was still clouded my so much doubt and fear of having the explanation taken away that I wouldn’t let myself believe it until a professional explicitly said to me, “yes, you are autistic”. And so I spent the next 4 months being pretty anxious about the possibility of not receiving a diagnosis.
It was only after this pre-diagnostic appointment that things really started heating up for me. Whereas before, I’d been a bit hesitant, more or less going with the flow and adopting a “just see what happens” attitude, after seeing the specialist, I became a lot more invested in the process, and to quite an intense degree. I felt I really, really qualified for and wanted a diagnosis. I started doing a tonne of research which led me to make the shift from being around 50% certain, to 80% then about 95% in the weeks leading up to the diagnostic appointment. Next up, I’ll be discussing what I did and how I was feeling leading up to my diagnostic appointment, before doing a post dedicated to the actual assessment experience itself.