Getting Diagnosed with Autism as an Adult: the Process
I had known I was autistic for quite some time before I was diagnosed. As a child obviously I knew something was up because I often got into fights with people and found it hard to interact with other kids well without really ever understanding why. It was only when a counsellor I spoke to in 6th form brought it up that I decided to take myself seriously for once and I decided the following year that I’d seek a diagnosis.
Getting a diagnosis for autism as an adult can seem impossible, especially when your doctor doesn’t understand that adults can have autism. It’s also difficult to get diagnosed as a woman. This is because autism is commonly seen as a male condition, and we tend to judge people on characteristics exhibited by autistic males. Still, it is possible to get diagnosed. I was diagnosed in January of this year (age 20) and I was pretty sure it wasn’t going to happen.
Rambling over: here’s the process of getting a diagnosis. In the UK at least. I’ve interspersed this with my own experience.
1. Make a list of why you think you’re autistic
This is step is probably one of the most important. You need to convince your GP, who probably doesn’t know that much about autism, that it’s very likely that you have autism. Make a list of your autistic traits and actually physically write them down. Initially speaking to your GP can be nerve-wrecking so it can be easy for your mind to go blank. Try and use diagnostic criteria if you can and prepare explanations.
2. Speak to your GP
My GP was pretty useless in this regard so I did have to speak to another doctor at my surgery. It’s through your GP that you get referred for the assessment. I will admit that I had to speak to 3 doctors before I got referred. The first said she’d refer me but nothing happened. The second dismissed me immediately saying that I did well in school and that I’m not a child. The third was pretty nice and despite the fact that I scored a 4/10 in the quick assessment he gave me, he still decided to refer me. I should also point out that at this point, a mental health professional had written a letter to ask for a GP to refer me for an ASD (autism spectrum disorder) assessment. I’ll get into that in a bit.
It can be easy for your doctor to dismiss you so it’s so so so important to try and keep a strong offence. Tell them why getting this diagnosis is important to you and how autism affects your daily life.
After being referred, you should get a letter saying you’re on the waiting list. You can be waiting on that list for months and even a year. I believe I was on the waiting list for half a year or so.
3. Pre-Assessment Tests
I’m only going from my experience her with the clinic I was with. When my appointment date was set, I was given a letter and two questionnaires to fill out. These were give me an initial assessment and to form the basis of the first assessment. During the first assessment, I was asked to explain my answers in greater detail, so it might help to think about these in a bit of detail and maybe think of advantages.
4. The First Assessment
My first assessment, as I said earlier, was basically going through the questionnaire in a lot more detail and being asked further questions. You should bring someone who’s known you well for a long time. I had brought my friend with me who I’d been friends with since we were 3/4 and it did help but a parent is preferred. In fact, my assessor asked my mum to come on a separate day (because she couldn’t make my first appointment).
5. Follow-up Assessments
If there is not sufficient evidence of autism from the first assessment, you may be asked to come for follow-up assessments. This may involve doing certain tasks which can demonstrate your autistic traits. I didn’t do this so I’m not entirely clear what tasks they do but once I get more information, I’ll post it here.
6. Diagnosis and Consultation
When the decision has been made, you will be called in and the verdict will be given. If you are autistic, you will receive a report which you can use as evidence for any requirements you may need at work or school. You can also use this opportunity to ask questions and to find out ways you can help lessen your difficulties.
But I can’t get referred…
So that’s the process of getting a diagnosis. Of course it may not be so easy. For example, you may not be referred by your GP because they don’t understand the condition. In my case, after I had been rejected the second time for a referral, I gave up. Instead I went through the mental health system to help with the difficulties I was facing. I did CBT but it wasn’t very helpful for me (not that CBT can’t help autistic people) and was referred to secondary care. In order to decide the best therapy for me, I was given an assessment. To my surprise, after that assessment I received a letter that had the summary of the report of that assessment. It turned out I had been discharged and I was to see my GP to be referred for an ASD assessment. I brought that letter with me when I went to ask a GP for the 3rd time.
I’ve seen this quite a bit- women going through the mental health system, only to find out that they were autistic and no one had picked it up. Honestly, if you’ve been refused an assessment quite a few times and feel you’re running out of options, I’d recommend going through the mental health system. Explain your issues and ask for mental health help and someone along the way will pick it up. It’s what gave me confidence to ask a GP that last time and maybe you can learn some coping skills along the way.
While writing this, I came across this video by the National Autistic Society talking about diagnosis and I’d suggest giving it a watch. A lot of this post came from my own experience so it might be useful to gain another insight.
See you in the next one 🙂