How to get an adult autism assessment in the UK

by | 6 Mar, 2021 | Assessment and diagnosis

I’ve had a few people messaging me lately to ask how to go about getting an adult autism assessment. I wrote an Insta post about my own experience a while ago, but here’s some more detail for those of you who are self diagnosed and looking to get a formal diagnosis.

The process will vary depending on where in the world you live; in many countries you will have to be assessed privately, and will need to pay for this. And sadly in some countries getting an adult diagnosis at all can be difficult (as I’ve found from talking to people living in Finland, the Carribean and some parts of the US) – but it can also be possible to find practitioners who are able to diagnose adults remotely. See the end of this post for signposts to further information.

I live in the UK, and was diagnosed by our NHS (National Health Service), so the process I know best is this one. It is also possible to be diagnosed privately in the UK, and I know of plenty of autistic adults who have gone down this route. Sometimes this decision is made because of difficulty getting their GP to support them; sometimes because NHS waiting lists are getting longer – in some parts of the country they are now three years or more – and they didn’t want to wait (and had the financial resources to go private).

Getting an assessment as an adult can be challenging for many reasons, and those of us who have been able to access one are privileged. If you’re not able to access an assessment where you live, or because of financial constraints, remember that self diagnosis is valid

How to get an adult autism assessment in the UK, via the NHS

The first step is to make an appointment with your GP. If you have one particular GP you know and trust, make an appointment with them – even if you have to wait a while. It can be daunting to discuss this formally with a doctor, when you may not have ever spoken these thoughts out loud to anyone, so it’s helpful if you can find someone you feel comfortable speaking with. You might also want to take someone with you to your appointment as emotional support or to advocate for you.

During the initial appointment, your GP will also have a chat with you and ask you why you think you’re autistic. It’s a good idea to go prepared with something written down (such as a list of your traits and experiences) that you can refer to if you go blank or find it hard to think/process on the spot. I didn’t do this, and I really struggled to articulate my answers, even though I’d spent years reading, researching and writing down my thoughts and experiences! Autistic people often find it difficult to put our thoughts into words, and you may find writing things down much easier.

Your GP may give you a short questionnaire to fill out (either there and then, or you might be asked to take it home). This is a standard questionnaire and is designed to pick up indicators that you might be autistic. Remember that your GP is a generalist and probably won’t know a lot about autism – especially in adults – so they’ll use this questionnaire to help guide them.

What to do if your GP is dismissive

If you’re unlucky, you might find that your GP is dismissive of you. This might be because they don’t know very much about autism, or that they have outdated, stereotypical ideas about what autism ‘looks’ like – or even believe that adults can’t be autistic. If you’re good at masking and ‘pass’ easily as neurotypical, your GP may be surprised by your self diagnosis, and might not be inclined to take you seriously. 

They may ask why you want a diagnosis. If you are good at masking, they may also tell you how little support you’ll be entitled to afterwards – implying that without access to support there is little point in getting a diagnosis at all (this is absolutely not the case – as my own experience, and every conversation I’ve had with autistic adults on my podcast, has told me). 

It may help you to have your answers to these questions prepared in advance (be honest of course, but have it ready so you’re not struggling to answer – I know I find it difficult thinking on the spot!). Be prepared to be put off. If that happens, try to insist that they at least have you fill in the pre diagnostic questionnaire (they should be able to print it out there and then).

If you get nowhere, you can ask for a second opinion / make an appointment with a different GP in your practice. You can also make a complaint if you are not able to get a GP to refer you.

What happens next

If your GP believes that you meet the criteria for assessment, based on your conversation and/or your questionnaire, you’ll be referred to your local mental health team. Waiting lists in the UK vary greatly (it’s a bit of a postcode lottery) and you might have to wait for two years or more between being referred and actually having your assessment. I was lucky; I had mine in 2016 and it took about eight months from GP appointment to diagnosis letter, but I know that as of August 2022, the waiting list in Wales is now two years.

If you’re unable to get a GP referral, or you don’t want to be on a waiting list for years (and you have the financial resources) you might choose to pay for a private assessment instead. However, if you’re intending to seek support following diagnosis, you may find that local service providers (such as social services) will not accept private diagnoses and will insist on you having an NHS diagnosis too.

Signposts to further information:

If you decide to pay privately for an autism assessment

If you are able to pay for a private autism assessment and decide to go down that route, I’ve compiled a list of organisations that might be able to help you here. This is not an exhaustive list; if you know of any organisation or link not mentioned, please do email me and I will add them.

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