How do I get a diagnosis of autism?
Updated: Aug 29, 2019
One of the key questions that I see being asked by people new to the autistic community is "How do I go about getting a diagnosis?". The answer to this varies from country to country. In this post, I will describe my own experience of receiving a diagnosis as an adult in the UK and what I learned about the process along the way.
The first step of any diagnostic process is identifying the symptoms that you feel are the sign of the condition you suspect. If you are wondering if you may fit the diagnostic criteria for autism, take a look at the most up to date diagnostic manual you can find. Make a list of the symptoms that you feel fit you, and then note down examples from your day to day life. Take stock of what proportion of symptoms you feel you fit, and whether there are other diagnostic categories that may fit you better. There is a significant overlap between autism spectrum conditions and other diagnoses such as ADHD, dyspraxia and obsessive compulsive disorder, and these can often complicate diagnosis. Having one of these does not necessarily mean you are not autistic, it simply means that this other condition may obscure your autistic traits, which under the current system often makes it difficult to obtain a diagnosis of autism until this other condition is better regulated with treatment.
Once you have your list of symptoms and clear examples, it's time to visit a GP. Do your research where possible: does your local practice have any practitioners who specialize in the diagnosis of developmental conditions? Have any of the autistic people you know had positive experiences with a particular doctor? Is there a doctor who you feel knows you well and has previously taken your concerns seriously? Whilst these factors are not a guarantee, they are likely to improve your experiences, and may well be helpful in obtaining a more positive outcome.
It's important to note that it's much more difficult to obtain a diagnosis in adulthood, and many people stumble at the first hurdle due to being turned away by their GP. Know that this doesn't necessarily mean you are not autistic. It is becoming more and more recognized that current diagnostic procedures are not 100% accurate or effective, and that many people - particularly women, non-binary people and people who have high empathy - are prevented from receiving a diagnosis because the criteria focuses on the presentation of autism in cisgender and hetero-normative men. If you are turned away, do not despair. Regroup, re-read your list, reaffirm why you believe this warrants investigation, and try again with a different doctor. You are entitled to a further medical opinion, and asking for this does not make you pushy, difficult or histrionic. We all make mistakes, and GPs are no exception.
Some people also experience greater success by trying to access diagnosis through alternative routes. Some try private diagnosis, which is often faster but can be more expensive, and is not always recognized as a valid diagnosis by NHS practitioners. However, you can also access diagnosis through some mental health services. If you are currently under the care of a local mental health service, you can approach your care co-ordinator or other front-line practitioner to discuss the options available to you.
I was fortunate in my experience of the diagnostic process. My GP took me seriously, referred me to the correct service, and due to a cancellation I was seen within 2 weeks of referral. From start to finish, the process took about 6 weeks for me, which is almost unheard of under current UK service capacity. However, I feel that there are certain actions I took which may have improved this, and I want to share these in the hope that this might help others.
Firstly, I was very assertive and to the point in my initial appointment. I chose a GP I was comfortable with, and to whom I had demonstrated my cooperation and built a rapport with. I went in and kept things simple, and I was conscious of seeming calm and straightforward. I opened with a statement along the lines of: "I've wondered for a while if I might be autistic or have Asperger's Syndrome. I've always struggled socially despite my intelligence, and since moving into the workplace I've found these difficulties are having a much more noticeable impact. I think it's time I looked into this further so that I can access the support I need to help me understand and overcome these difficulties and continue working." I then listed the symptoms I felt I had, and provided the examples I had written down for each. I kept it as brief as possible, and tried not to over-argue the point. I probably spoke for about 3 minutes. She listened, nodded, and then said the words I had been hoping for. "Well, it sounds like you've thought this through. I'm happy to refer you, but please be aware I cant make any guarantees about the outcome, and that it might take a while." It was a huge relief! She thanked me for being clear and straightforward, and I had a real sense that approaching it in this way had encouraged her to respond in kind. So whilst it seems minor, it seemed to have a very positive impact on the outcome.
Secondly, I was very clear about my availability. As soon as I received my referral letter, I contacted the referral service and told them that I was happy to attend appointments on any day given 24 hours notice. I had primed my manager ahead of time and explained the importance of this. I understand that this is not possible for everyone, and I don't advocate putting your job at risk for the sake of a few weeks wait. However, I would urge anyone seeking diagnosis to make a note of the days you are free and the notice period you need for time off, and to contact your referral service to let them know. Be clear that you are happy to be contacted in the case of cancellation given the notice period you have specified. Again, there are no guarantees, but if you are someone with a lot of flexibility it could well help you to be seen faster.
Finally, be prepared to be vulnerable in your diagnostic session. The number of sessions and method of assessment will vary from service to service; be sure to get further detail from the diagnostic service on what the process is likely to entail and what the format and aim of each appointment will be. In my case, I only had one appointment. In this session, they took a developmental history, asking me in-depth questions about my childhood, adolescence and adulthood and how I had experienced my symptoms over time and responded to events in my life. It was hard to talk about, especially opening up about how lost I had felt socially throughout my life despite giving an outward impression of having it together. At a number of points I had the urge to clam up and gloss over difficulties, but I deliberately and consciously overrode this. It wasn't easy, but this deliberate choice to be vulnerable meant that my diagnostician got a full and accurate picture of my difficulties, in a way that previous professionals hadn't. I fully believe that dropping the mask made a huge difference to how easy the process was for me overall, and was why my autism was picked up on by this doctor where previous doctors, teachers and mental health workers who had only seen the mask did not recognize my symptoms. It's important to recognize that, whilst this mask has helped you to succeed socially so far, it is a coping strategy which obscures your symptoms, which is likely to make your diagnosis much harder. It takes a conscious effort to take it off, but allowing your difficulties to be seen clearly will help your clinician understand the effect your condition has on you.
In conclusion; be assertive, be clear, and be honest. This is your opportunity to explain why you think you're autistic. Do your research, and go in with an understanding of what they need from you in order to refer and diagnose you. And if you don't get the outcome you feel is appropriate, know your rights and be prepared to ask for a second opinion. I hope this week's article has offered an insight into what the diagnostic process looks like. If you have suggestions or questions of your own, drop a comment below!
Thanks for reading!