Getting an ASD diagnosis as an adult in the UK

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.

The wait

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.

The assessment

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.

The diagnosis

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.

The report

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:

getting an ASD diagnosis as an adult

the girl with the curly hair’s journey to getting an ASD diagnosis as an adult

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.

6 Responses to “Getting an ASD diagnosis as an adult in the UK”

  1. Niki Bradley

    Hi there
    Thanks so much for your help with my struggles.
    I wonder if you can tell me do you do an audio book in “The Girl with the Curly Hair” my husband doesn’t read but he does listen to audio books a lot. Thanks Niki

    Reply
  2. Emma Faulkner

    A year down the line and I’ve just been told I’m through to the next stage, which is a full assessment. Our PCT has a huge backlog. One of the questions I’ve been asked is why, as a 40-something successful woman, I need a diagnosis. Just knowing that I probably have Aspergers has already made such a huge difference. Getting an official diagnosis and more importantly the help and support that comes with that can only be a positive.

    Reply
  3. be a waterwolf

    This is fascinating, the way it is done in the UK. Here, it does not seem as though diagnosis centers (at least in the Great Lakes/Midwest area of US) are prevalent. However, I would say that 4-6 years is just around the neighborhood of what it took me, through working with a psychologist. There were some questionnaires/interviews with my mom, but, I found that I was too embarrassed, years back, to be completely honest in questionnaire with the more personal questions. To NTs, they likely would not seem so personal, but, I would gather that most on the spectrum, from what I have read, have a similar feeling of wanting privacy/not talking about body-related issues that I have. In any case, I was so lucky to have found a very smart, great person to work with. She had also given me a full evaluation, which is how I had met her. The non-verbal learning dis(order)/(ability) <- not sure if the two are different…tipped me off to wondering about falling somewhere on the spectrum. Anytime I brought it up, she never made me feel guilty like I have seen with other womens' experiences. (Although, from how you describe yours, Alis, it seems as though you felt you were treated with respect).
    In any case, the process in the UK, to me, seems a bit cold and scary, given I will not go near a GP. But, wow. I will say that it would sure be nice to really feel there was a consensus. There also is a very "official" tone the process has. I like the idea that a network of people worked on your case. However, I definitely am glad, personally, that I only dealt with one person who I like, and no GP! Still, I suppose fear of medical doctors maybe could be accommodated, in some way by maybe a meeting via Skype?
    Anyhow, I love this blog, and your work, and will be integrating it in with my own treatment. Thank you! -J.

    Reply
  4. Emily

    Hi, I’m about to go see my gp as my meds are being changed yet again as my anxiety and depression has got bad again. This is a battle I’ve had my whole life. Sometimes being ok, but never for long. I HATE socialising and my new relationship has made me realise how bad my ‘issues’ are – the thing is im happy on my own. I don’t want to meet lots of new people and sit and giggle about rubbish and talk about things that don’t interest me – but this is causing problems when it comes to my partner wanting me to come along to business events for his work. He doesn’t understand it and the cbt guy that we see says it’s social anxiety – and that I need to overcome it. I don’t get why – why can’t I be left to stay where I’m comfortable? My daughter has been diagnosed with Aspergers – she wasn’t diagnosed until the age of 14 and once we knew that’s what it was I totally understood her. We have so much in common with our likes/ dislikes, how we feel about situations and the things we worry about.
    I think I’ve got really down again lately because my eyes have been opened to how ‘different’ I feel with other people. I have a couple of close friends but I find I can only manage time with them when I feel comfortable. If some stupid thoughts or worries get in the way I just can’t do it.
    I’ve never managed to keep friends over the years and even as a kid. I remember a birthday party where 1 person was able to come out of about 10 that I invited. It hurts and I’ve always felt that people don’t like me – but now I’m wondering how much of that is me.
    I’m scared of going to ask the gp to get this looked into. Is this just my anxiety making this bigger in my head than it seems or isn’t there more to me than I thought. I just want answers. I need to know why I struggle so much.

    Reply
  5. greencat

    It may be regional variations, but the process was 6 months from seeing GP to seeing a psychiatrist. The psychiatrist checks for other conditions and then asks autism specific questions.

    Reply

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