Three years ago, my Instagram feed began filling up with mental health content. I was quite vocal in sharing activism-related posts on social media, and with the intersectional stance I took, it was only natural that this kind of information made its way onto my explore page. As I interacted with the topic and shared awareness infographics, I noticed increasingly more posts about autism: common traits, relatable stories, even descriptions of how autism manifests itself in different types of people. In the process, I became curious about people’s experiences and soon realised that they very often matched my own. As I searched Instagram for more information, I became more convinced that, maybe, I too have autism.
Born This Way
Autism Spectrum Disorder (ASD) is defined by the National Autistic Society as being a lifelong developmental disability that affects how people communicate and interact with the world. Autism is something you are born with, and contrary to some people’s beliefs, it cannot be ‘cured.’ It’s also important to note that autism is a disability. Not all autistic people (myself included) choose to identify as disabled, but that doesn’t change the fact that ASD is an ‘impairment’ that has a “substantial” and “long-term” negative effect on your ability to do normal daily activities.’
You may have heard of autism referred to as ‘Asperger’s’; however, this term is no longer used. It was originally coined by a Nazi scientist who separated disabled people into categories during the Holocaust to decide who would be killed or kept alive. The autistic community has rejected the label, and people who previously received an Asperger’s diagnosis usually identify as having ASD/Autism instead.
Some ubiquitous characteristics of autistic people include struggling with social communication and interaction, displaying restrictive behaviour, sensitivity to sensory stimulation, and experiencing meltdowns and shutdowns. There is also a high comorbidity between autism and mental health issues such as anxiety, depression, and insomnia.
Research and You Will Find
I was still researching ASD when one of my closest friends told me they were trying to get an autism diagnosis. By this point, I’d shifted to looking at more reliable sources, things like the DSM-5 criteria and scientific journals. I told my friend my thoughts about myself and we agreed that we were both almost definitely autistic.
I was torn about labelling myself as autistic because what if I wasn’t? What if I was ‘just attention-seeking’? However, having someone close to me confirm my conviction was a huge relief. Autism answered many of my long-standing questions about myself. Problems I’ve had with friends and communication, all the times I got overwhelmed or struggled to speak, issues with food — finally it all made sense. I now understood why things were the way they were. At the time, understanding the cause of my behaviour was enough. I was managing well enough in my day-to-day life, and after gradually telling a few of my closest friends, I decided that I didn’t have to do anything else about my self-diagnosis.
Clarity and Confirmation
By the end of 2022, things became harder. There was much more pressure at school, my family was arguing, and my mental health was suffering. With much convincing from my friend, I drafted an email to my parents. I explained what autism was, and gave a list of as much evidence as I could think of to prove I may be autistic. Although not entirely convinced, they supported me and said we could look into it. But as soon as my mum spoke to my GP, she was told there was no point trying to get an assessment through the NHS. It can take well over a year to get an initial screening for young people in the UK. And once that first screening occurs, the assessment process can take just as long. By the time I would be able to receive a diagnosis, I would be over 18 and would need to be transferred to a different department — with even longer waiting times. We had two options: go private or don’t get a diagnosis.
Luckily, I was fortunate enough to be in a position where my parents could pay for a private ASD assessment. By April 2023, we received the results: I am autistic. Private assessment costs different amounts at different clinics, but generally, the full cost of a private diagnosis is somewhere between £1800 and £3500. This is a lot of money, but the costs are arguably justified. Late-diagnosed autistic people often struggle with anxiety and depression, often from or before the age of 14. Notably, 35 per cent of autistic adults have attempted suicide. Whilst an estimated 1 per cent (although it is likely higher) of the British population is autistic, 15 per cent of all those admitted to hospital for a suicide attempt are autistic.
Life-Saving Self-Diagnosis
Many people are unable to afford a private autism diagnosis, and for these people, self-diagnosis, whether temporary or permanent, can be life-saving.
When I received my diagnosis, I suddenly felt able to access the support I wanted and required. I had needed the support before, I just didn’t feel comfortable asking for it. My familial relationships greatly improved because my parents and sister could now understand me better. My mental health also benefitted significantly just from being able to tell my parents that I may have ASD. Most crucially, getting the ASD diagnosis meant I finally had an explanation if someone asked me why I was being ‘weird.’
The relief of being allowed to be myself was greater than I could ever have anticipated. Too often, autistic people don’t realise just how much energy it takes to hide their personalities, and how much of their happiness that consealment saps. They hide until that moment when they, at last, feel comfortable and safe enough in their environments to stop doing it.
Despite the clear benefits of self-diagnosis, some people remain sceptical. ‘Attention-seeking’ and ‘faking’ are frequently launched accusations. Whilst some people who self-diagnose are not autistic, 80 per cent of self-diagnoses remain accurate. Even if ASD isn’t the problem, people who self-diagnose as autistic may have other disorders or disabilities that share common traits with autism. In this case, self-diagnosis can give them access to the support they require.
Autism diagnoses are essential and can be life-changing for people with ASD. The downside is that those who need them often lack access to them. If someone you are close to tells you they suspect they might be autistic, trust them and listen to them. Your support means so much more than you realise.
If you think you may be autistic, visit https://www.autism.org.uk/ for more information and resources.
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