One of the questions I am most frequently asked is what the process is like for getting an ASD diagnosis as an adult in the UK. On the contrary to most people I talk to, my own journey from undiagnosed to diagnosed as an adult was straightforward, albeit very slow. There are a few things you need: patience, persistence, self-awareness and knowledge, and a clear goal – what do you want the outcome to be? For most, the outcome they most desire is the official diagnosis. The first challenge is that generally in the UK there is a shortage of adult autism diagnosis and assessment services. The first step for most people must be a trip to their GP.
Make an appointment with your GP
If you’re anxious about this, ask a family member or friend to make it for you. It is also helpful for someone to accompany you to the appointment.
Before the GP appointment
This is where the skills, “self-awareness and knowledge” come in. Before you visit your GP, it is extremely helpful if you’ve researched ASD in advance and can match diagnostic traits with your own traits. Use the diagnostic criteria, such as from the DSM-5, and bullet point your own issues against it. Make a list. Take that sheet of paper with you to the GP.
The GP appointment
Your GP will most likely want to know why you think you have ASD and why you are asking about a diagnosis as an adult. Why now do you want a diagnosis, and not when you were younger? Show them your list that you have prepared. Tell them why you want the diagnosis. My own reasons included:
- Lots of research and reading over the last few years which I could relate to
- Having difficulty in the workplace communicating with colleagues and an explanation would make it easier for both myself and my colleagues
- The gateway to support that a diagnosis would bring. It means you’re eligible for ASD-specific CBT and counselling, etc.
- My own personal sense of closure why I lived my whole life feeling “different”
- Friends misunderstanding me when I don’t spend time with them outside of work and university, thinking I don’t like them, bringing a strain to our relationship
- Strained romantic relationships with frustration and confusion on both parts
It’s sensible to acknowledge that GPs are indeed general practitioners. This means they won’t necessarily know a lot about autism. Make it your job to make their job as easy as possible. Tell them what you want (to be referred for a diagnosis). A good GP will listen and oblige if they feel your concerns and reasons are valid.
The referral to an ASD diagnosis and assessment clinic
After your appointment with the GP, they will send a letter to your local or nearest ASD diagnosis and assessment clinic. This letter will describe your concerns from what you have told your GP at the appointment.
This is the hardest bit, in my opinion. You need to have patience and wait for the diagnosis clinic to write back to you.
If you don’t hear anything within a couple of months, I suggest telephoning or emailing the clinic to chase up. You must be persistent.
The paperwork and questionnaires
In the first instance, if I remember correctly, your paperwork from the diagnosis clinic will mostly include an enormous number of questionnaires for you to fill in and send back. These questionnaires are their “filter” I presume. Fill them out as honestly as possible and send them back. They are general questions relating to different aspects of autism. In the coming weeks and months, you will most likely receive more questionnaires. At some point you might also have a short telephone interview. At this stage, there is a lot more waiting on your part. And a lot more chasing up – on your part.
Eventually (I’d estimate between 9-18 months’ from the first GP appointment) you will receive a letter with details of your assessment. It should tell you exactly what to expect, such as:
- How long the assessment will last (typically 4-6 hours)
- The need to bring a family member or someone who has known you since you were a child
- How they will assess each of you (together and separately)
I brought my mother. Once we were there, the assessment was a smooth ride. We were on the ‘home run’, so to speak. Two psychologists gave us a brief overview of what the day would be like and then I had my assessment with a psychiatrist, that lasted about 4 hours (with breaks). He asked me lots and lots of questions about every aspect of my life, from child to now. He asked me some very personal questions, so be prepared for those too. In parallel, my mother had discussions with the two psychologists. She told me they asked her all about my childhood, with the purpose to identity any autistic traits when I was younger.
After the lunch break, we were seen together by a couple of psychiatrists (one was the consultant who had just assessed me). The “new” one wanted to know why it was so important for me to be diagnosed. My mum sat beside me and listened as I poured my heart out and she backed me up. I think the new psychiatrist had the final say, given the ‘evidence’ received from the other one. After about thirty minutes, I was informed that I did indeed have Asperger’s Syndrome. They hoped very much that now I had the diagnosis I would find it helpful and that my own life and social relationships would be better.
This was another long wait, full of chasing up by me. It took about a year to finally receive my diagnostic report in the post. But now that I have it, it’s kept safe at home in my medical records folder. My GP also has a copy. The assessment clinic sent them their own copy. A visual I did on the process:
I’d like to end on a positive and say that yes, it was worth it. My social relationships have improved. There is still strain in my romantic relationships but at least both of us know why and we know where to go if we need help (autism resources, rather than just…relationship resources). As an employee, I have felt much more comfortable at work. My managers have made necessary accommodations for me and, although I’ve never specifically told my co-workers I’m autistic, they probably know due to all my work with CHP. I hope they can now see why I’m a little peculiar or aloof sometimes. I hope they can see it’s not personal. I’d also like to say that all the medical professionals I’d had communication with (the GP, the psychiatrists, the psychologists, etc.) were all absolutely lovely, determined to help, and very receptive and open to listening. I hope you have as much luck as I did.