People from the Highlands describe the impact that getting diagnosed as autistic in adulthood had on their lives
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It is estimated that over a million people in the UK are autistic – but there are still stark differences within that number.
Most people who are diagnosed as autistic, for example, will receive that diagnosis as a child.
Last year though, research in England suggested that around 180,000 people aged 20 or above received an autism diagnosis, which still leave the majority of adults with autism without a formal diagnosis.
Having that clarity confirmed by a medical professional can be life-changing.
Support, though, can be minimal. There is still a relative lack of understanding in how to identify autism in adults compared to children, which at least partially contributes to the proportion of undiagnosed people suspected to be out there.
It can at times be left to groups like the Autism Rights Group Highland (ARGH) to facilitate courses that help people adjust to their diagnosis.
Funded by the Scottish Government, their “Welcome to the Autistic Community” course is open to people aged 18 and above who have been diagnosed within the last five years, and focuses on what it means to be autistic living in a society geared towards neurotypical people – including things like accessing benefits, understanding legal rights and autistic history and empowerment among other topics.
To get to that point, though, people can go through a long period of struggle and confusion.
One such example is Lewis, who says he pursued a diagnosis after decades of failed attempts at getting help from GPs and mental health services.
Lewis remembers feeling strong anxiety going as far back as playgroup and primary school, and says he struggled to make friends. That was not a major problem for him, though, until going to university and being unable to face attending classes until he dropped out.
Things took another turn for the worse when he was 25, suffering his first autistic burnout that left him practically unable to move or communicate – at that point being diagnosed with anxiety and depression, but not autism.
Recovering well enough to return to work, professional life was filled with regular issues that Lewis now recognises as smaller burnouts.
Eventually he would become a lecturer, and the relationships he built with autistic students planted the seed in his mind that he may be more similar to them than he realised.
“I had always wanted to do the job and was motivated by being able to prevent the poor experience that I had as a student,” he said.
“After I suffered another burnout, I began considering autism at this point, and began seeing a private psychiatrist who specialised in autism diagnosis so that I could try and figure it out, this was £100 an hour so was unsustainable but kept going into the start of the pandemic.
“Then, all expectations were dropped. I was treating myself as if I was autistic and everything became better. I began to learn about autistic peoples stories and that they were successful, normally looking people – people I may even look up to.
“I was working with large numbers of autistic students, and I seemed to relate well to them and have similar experience. It became clear this is not what others were experiencing, so I pushed my GP to refer me and got put on the waiting list.
“About two years later I was seen and went in for an assessment where they told me I was indeed autistic.
“Now I know what has been wrong with me my whole life, I can actually advocate for myself. My whole life I have been told I was wrong when I communicated pain, intense suffering, discomfort and confusion, but now I know it is real and most importantly what triggers it.
“Up until diagnosis I was essentially playing a bit part in someone else’s life, now I can – mostly – do what works for me and makes me happy.
“This was the big problem with a diagnosis of depression. The advice is to push yourself, do new things, meet new people – this is awful advice when you are in burnout. You need rest.
“I had initially dismissed the suggestion of autism as I had only ever seen severely autistic people. I had not considered there were people with symptoms of autism that didn’t also have a learning disability, but I now know this is the majority.”
Another who received a different diagnosis before finding they had autism is Mike Stringer.
Mr Stringer (45) had received a bipolar disorder diagnosis, but it never quite felt like a full explanation of what he was feeling.
In his case, the so-called lightbulb moment came when snippets of a conversation he had while applying for jobs at the citizen’s advice bureau kept coming back to him with increasing relevance.
He, too, can look back on moments in his life with regret now that he can attribute them to autism, be says he is a happier person having gone through the diagnostic process.
“I didn’t realise that I maybe autistic until about five years ago,” Mr Stringer explained.
“I started to research, finding everything I could about autism through videos and blogs. I would get the guy, who is now my friend, to tell me more about his work colleagues who he suspected were autistic and the pieces started to fit, but in the end I had overwhelmed myself and thought ‘I’m not like any of these people’.
“I needed answers, though, for all the coincidental mishaps that had plagued my life everything going the opposite way of how I intended.
“It does bring a tear to my eye remembering all the failures of my past. This is something that plays on the mind a lot, who is right: the voice in my head or me? The only way of knowing for sure was to get a diagnosis.
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“I was told there would be a two-year waiting period, which I believe is longer now. Every step put doubt in my mind as no health professional until then had believed what I had been trying to explain to them.
“For a long time I was depressed. In fact, most of my life there was something hanging over me, like there was something wrong with the world.
“Getting diagnosed and realising I was born autistic took a while to sink in, but it helped me realise triggers that I didn’t even know were there and helped me respond in a more positive manner instead of overreacting or having a meltdown.
“I am a much happier person now. I never thought those days would end – in fact sometimes I catch myself chuckling at how unhappy I was and that in return makes me smile more.
“I have a sense of achievement that I didn’t give in. You will always find someone who will listen but persevere and you will find someone who understands.”
SJ Groenewegen took a slightly different path to realising they were autistic.
In their case, the pieces began to fit when working on their novel, ‘The Disinformation War’, of which the main character was an undiagnosed autistic young adult.
It was only when reading Elle McNicoll’s ‘A Kind of Spark’ that it really clicked though, and they were fortunate enough to be able to go down the route of private treatment to get a formal diagnosis – mainly for peace of mind.
“Looking back over my life, the question has popped up a few times but I usually found some way of dismissing it,” they said.
“Then, during 2021 when I was working on major structural edits to my novel, a few factors coalesced into a realisation that maybe I was autistic.
“Too many things I read while researching chimed with me, but I still resisted the idea. I eventually wanted to pursue a diagnosis for peace of mind, and I thought it might be useful to have the ‘bit of paper’ just in case.
“Back in 2021 with the ongoing Covid-19 crisis, I took one look at the potential waiting list at NHS Highland and saw that was not an option for me. I looked online and found a service that I could afford – I am very aware of the privilege I have in being able to take this option.
“I liked that it was a service set up for adults, was queer-friendly, and framed things in as positive way as possible given the diagnostic criteria they have to follow are focused on deficits. I then found ARGH and signed up for their post-diagnostic course, which was incredibly helpful.
“Looking back, I realise just how much stress I was accumulating in my body that was caused by my being autistic and struggling through.
“However, parts of work that I was great at were exactly because my skillset was part of being autistic – understanding complex patterns and a keen sense of justice.
“I now write science fiction novels, and science fiction is a place that has attracted a lot of autistic and other neurodivergent people which makes it easier to navigate the vagaries of publishing. I also have the incredible support network of ARGH and similar autistic groups. Being able to take part in campaigns to make life better for autistic people is important to me.
“I’m also happier to be myself more, but it’s an ongoing journey.”
