TLDR (too long, didn’t read): Go to your GP.
Step 1: Work out why you want a diagnosis
Most people find that getting a formal diagnosis makes their life easier. Self-diagnosis is valid, but not recognised by everyone.
You might feel that a diagnosis will enable you to understand yourself. To know yourself. To be comfortable with who you are. A diagnosis can empower you to ask for what you need – at work, home, socially or anywhere else.
You might have been told that you shouldn’t pursue getting a diagnosis. Or that your reasons are silly. But it’s no-one else’s business but yours. You deserve the same access to diagnosis and support as everyone else.
Step 2: Prepare yourself
Getting a diagnosis isn’t easy for most people. The process could make you feel angry, frustrated, sad, anxious, exhausted and all kinds of other things.
I’m not telling you this to put you off. I’m telling you because I think forewarned is forearmed.
Prepare to be persistent and resilient, even though those things might not come naturally to you. Telling someone about your proposed journey can be very helpful here, as they can advise and encourage when things don’t go to plan.
Read lots of things about ADHD and autism. You can read books or social media posts, or my blog posts Am I autistic? and Do I have ADHD? You should also read the NICE guidance on autism and ADHD.
Step 3: Go to your GP
Go to your GP with a list of reasons why you think you might have ADHD and/or autism. The GP should refer you to a specialist for diagnosis. If they don’t, go to another GP.
You can also be referred by another medical professional. I was referred by my therapist.
The waiting lists are really long although they vary according to where you live. It could be 2 years.
If you want a private diagnosis, you can get a referral through your GP. Or you can find a private clinic near you, either by searching online, or asking for recommendations. Psychiatry UK is the biggest online provider but they’re massively busy and have a waiting list. Neuroclastic have a world-wide list of autism diagnosticians.
Step 4: The process
You will have to appear to be ADHD or autistic enough to get your diagnosis, which means for some people (I’m looking at you, adult women who appear to cope), you’re going to have to drop the mask. You might find that quite challenging, after all your years of trying to act normal, being told to stop fidgeting, and trying to suppress the urge to make weird sounds with your mouth.
You’ll probably have more than one appointment. You’ll be asked about your childhood and about your life now. You might have to do some tasks or exercises. I expect you’ll find the whole thing uncomfortable and possibly quite stressful.
After the sessions, you’ll be sent something or receive a phone call with your diagnosis. You will doubtlessly have many feelings at this point. Please be kind to yourself and seek support if you need it.
Remember, the point of this is for you to convince them you’re autistic or have ADHD, so please don’t downplay how difficult things are, or how crappy you feel sometimes.
After your diagnosis
There’s no set post-diagnosis path.
Some people tell family and friends. Some tell strangers. Some feel angry. Others feel relieved. For some people, it doesn’t make that much difference. For others, it changes their entire life. It’s all valid.
You might be offered post-diagnostic support. You don’t have to accept it but it could be useful. Learning coping strategies for your challenges, and how to harness your strengths, can be very empowering. For a lot of people, realising that a thing they do or feel is because of their ADHD/autism can be very enlightening.
You could join a community of people like you. There are lots of groups on Facebook, and Twitter has plenty of cool people too. Not all of them will be right for you. That’s OK. Your tribe is out there, and you don’t even have to join it if you don’t fancy it.
What if the diagnosis is wrong?
OK, I’m gonna level with you. In any job, there are people who suck, and ADHD/autism diagnosis is no different. The person diagnosing you might not be very good at it. They might be using outdated diagnostic criteria (which are geared towards white males). They may be unable to see beyond your mask. The process might not be suitable for someone like you.
Being told you’re not ADHD/autistic when you know – actually, you feel – that you are, is really hard. Especially for people like us. We’re so used to the “authorities” being correct that we tend to value their opinions more than our own.
If you don’t agree with your diagnosis, you have several options.
You can leave it. You can come back to it later or never.
You can file a complaint with the organisation. They should have a complaints process. If it’s NHS you can complain directly to the clinic or through PALS (Patient Advice and Liaison Services). You can find your local PALS by searching here.
And you can get a second opinion. After all, you would if it was something else, right? Getting a second opinion can be done together with your complaint. Something like “You suck, give me someone who knows what the f*** they’re doing” (you may wish to reword it). The alternative is going back to your GP and getting a new referral which will take ages.
You don’t need to wait for a diagnosis to make your life better. Here are some things you can do now:
- Connect with other people who understand what it’s like. You can do this through social media groups, real life (Meetup has some neurodiversity gatherings), support groups, etc. There are lots of ADHD communities online.
- Get some coping strategies. Some of those social media groups I mentioned have people sharing coping strategies, or you can develop your own, or you can get a coach.
- Get a coach. These cost money (£45 an hour minimum usually) but can be immensely helpful. If you have a job (self-employed or real), Access to Work can pay for your coach. Apply now, they’ve got an epic backlog.
- Join a coaching programme. These are more affordable than one-to-one coaching and are short term. You learn what you need then you can manage on your own. My personal recommendations for group coaching programmes are those run by Anna Granta, Jeremy Finck and Saskia Wenniger – I have worked with all of them and can vouch that they’re very good at what they do.
- Get mental health support, if you need it. If you’re ADHD and/or autistic and undiagnosed, you’re almost certainly going to have “issues”. Mental health help can be quicker to access than a diagnosis, and there are loads of avenues, from self-help, to NHS services, to charities, to private therapy.
Finally, be kind to yourself. And remember that you’re not alone.
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