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My Autism Assessment Journey

And why it was about the friends I made along the way

The author contemplating autism on a bus | Image by author

I had an autism assessment recently. It had been a long time coming.

Different

I’d always known I was different. For a long time I thought it was down to a difficult childhood. Nurture rather than nature.

I grew up in a council tower block (social housing in the UK). Neither of my parents worked. My dad had undiagnosed mental health issues and I wasn’t sent to school. Bills weren’t paid, there was no gas or electricity for long periods and I spent those years in a cold dark flat lit by candles. When I was seven I snuck out in the early hours of the morning to go on solo adventures.

That kind of childhood makes it difficult to separate psychological issues from neurological ones. Was I the way I was because of what had happened to me or was my brain wired differently?

I meandered through life and thought I was weird but that made sense — I’d grown up weird. So I didn’t fit in anywhere. There was only one of me. I was from another planet but abandoned on earth.

My parents separated when I was seven. My mum, sister and I left my dad. I was able to start school but had to change schools as we moved around between temporary accommodation. I’d missed a lot of school and was socially awkward, too. Precocious when speaking to teachers, referring to other kids as “the children.”

By my teens I had routine and stability but started skipping school. I felt uncomfortable and out of place. There was some bullying. So I spent most of my time in my inner world with my books and thoughts. Obsessively reading, coding or tinkering.

Around my late teens I heard mentions of autism, or ‘Asperger’s syndrome,’ a term common then but not used now. It is now all classified under Autism Spectrum Disorder because of Hans Asperger’s troubling Nazi associations.

Some of those mentions were directed at me but I didn’t take notice or look into it. As far as I was concerned my differences were unique and couldn’t be explained by some condition or disorder. I didn’t want something to be “wrong” with me. There was more stigma back then, too.

I also wanted to hold onto the resentment and anger at my childhood. That pain was my armour.

Regardless of whether I wanted to know about autism or not, I did have many, if not all, of the traits.

There were the obsessive interests. I could disappear into them for days, weeks or months. Hours each day, fixated and unmoving. Then there was my memory and recall, being able to memorise hundreds of sequential items and recite them back (like all the classic Doctor Who serials from 1963 to 1989) or the ability to see patterns and connections others missed, and make leaps of logic.

The social awkwardness remained. Problems maintaining eye contact, talking obsessively about my interests in great detail without noticing whether the listener was interested or not. Not being able to pick up on cues or body language.

And I made repetitive movements, like rocking back and forth or tapping my foot. I was also very stuck in my routines and would be distressed by unexpected changes.

Though typical, these were not exclusively autistic traits. But they were more pronounced when I was younger. I trained myself out of them later. Or rather, I was able to suppress and hide them better, especially as I became more self-conscious going into my twenties.

I decided to learn how to be more social. Or at least mimic being social.

Masking

I interrailed around Europe, staying in hostels. A city a week with every week being a reset. No consequences, I wouldn’t see the people I’d met again. So I could try out different personas, experimenting to find the right amount of eye contact or modulating my voice and gesticulating to better tell stories or jokes. I took what worked well in one place to the next. Like a stand-up comedian working up a routine. A script.

Being scripted is actually an autistic trait too. Preparing in advance. As is mirroring, observing and copying body language and mannerisms from others, which I also did. I was adopting the mannerisms and speech patterns of those I met. Learning to pass as “normal.”

I was learning to “mask.” Autistic masking is about putting on a performance to blend in. I got good at it. Months later when I returned, everyone wondered if I was still the same person who’d left months earlier. It seemed some other person had returned. One who was confident, funny and more at ease around people.

But I was still just as awkward and self-conscious. But now it was all better hidden.

Masking is a defense mechanism to fit in and be accepted. We go to surprising lengths to belong, have connection and community.

It is a form of people pleasing and comes at a cost: Always needing to be “on” and hypervigilant so no one notices what’s under the mask.

You spend additional energy to do what may come naturally to others. Or worse, over time, lose a sense of who you are without the mask. You many not be able to fully develop a genuine sense of self in the first place. Prioritising what might please others instead of your own needs can result in not really knowing who you are and what you want.

Masking becomes easier over time to the point that you stop noticing you’re doing it. But the extra energy cost is still there, as is the denial of self. The edges blur. Where does the mask end and where do you begin?

Which isn’t to say it’s always draining or negative. Like any activity you get good at, it can be enjoyable. It has been for me at times and I’ve been described as a “social butterfly” or even “bubbly.” But it’s not natural. Even a well practiced performance is still a performance. It can be difficult when tired or feeling low energy. Then the mask becomes heavy.

A continued toll can lead to burnout — autistic burnout. Leaving you depleted, lost, confused and overwhelmed. That can lead to social withdrawal, depression or worse.

I’ve been there a few times.

I didn’t know anything about autistic masking or related burnout until fairly recently. I’d always thought I was simply trying to fit in and finding it harder because of my childhood. I assumed race played a part too. I clung to an exclusively white crowd and there was another form of masking I did there.

Assessment

A few years ago I started seeing a new therapist and by the second session they gently mentioned I should consider an autism assessment. That was the first time in a while autism had come up for me.

Awareness had increased in the years since and I’d learned more too. Enough to know that autism seemed to describe my differences well. By this point I wasn’t worried about any stigma if it did turn out I was autistic. In fact I welcomed it. I’d mostly gotten a handle on my childhood trauma and was open to anything else that would increase my understanding of who I was.

I spoke to my GP and was placed on a NHS waiting list in 2021 while I was in a busy and fast paced job. Responsible for 50 people running critical national infrastructure during the pandemic. All preceded by years of pushing myself too hard and neglecting self-care. The environments and roles I’d been in also required a lot of masking

By 2022 it all caught up with me and burnout was inevitable. So I resigned and also came out of a long term relationship. A few months later I found myself packing up my rental flat and hitting the road on an open-ended trip around the world. I was leaving everything behind.

I had to be removed from the autism assessment waiting list.

On my travels I could let the mask down. That drew other autistic and neurodivergent people to me. Or me to them. Some double empathy at play — the resonance those whose brains are wired differently have with each other. It kept happening and I was encountering more and more autistic people. All of them more knowledgeable about autism than myself.

Had I found my people? Or had they been there all along?

Looking back on my life, at the environments I’d felt most comfortable in, it started to make sense. The tabletop roleplaying games shop, or the goth/alternative club I used to go to… it all fit. I was encountering the same kinds of ‘weirdos’ on my travels.

Upon my return to the UK I made getting an assessment a priority. I was convinced I was autistic and wanted certainty. I wrote about my journey leading up to that point titled with a rhetorical question, “Should I Get An Autism Assessment?” The answer was “yes,” of course.

I decided to go with a private provider this time rather than a referral through my GP. It would be faster and I was impatient.

I also put in a request for an ADHD assessment through the NHS Right to Choose framework. Something I wasn’t in a rush for. ADHD had come up in conversations on my travels and previously too. But autism was my priority.

For the autism assessment I would need an “observer”, someone who had known me since childhood ideally or at least a long time. I picked my best friend. We met when I was 15, in my first job washing pots. I could have gone with my mum or sister but there are complications and I wouldn’t have felt comfortable.

I completed a questionnaire with multiple choice questions about my past and present along with a safeguarding questionnaire.

After completing and sending those back a 90 minute video call with a psychologist was scheduled. This would form the core of the assessment and be followed by a 45 minute call with a psychiatrist. My best friend would be present for both, joining from his home.

The first session, the call with the psychologist, was an interview with scripted questions about my behaviours and experiences. First I was asked a question and then my friend was asked the same one, in relation to me. Hearing my best friend describe and talk about me was odd. I’d never experienced anything like it.

It was almost as if I wasn’t there. Hearing him describe me I realised that no matter how long or well someone knows me they will not know my inner world.

No one but me will.

I also realised that some of the characteristics, behaviours and preferences my friend was describing were things I’d adopted early on to impress him — so he would want to be my friend. Obviously, the friendship has evolved greatly over the many years since, but it was a sobering realisation.

Would we become friends if we only met now for the first time? Maybe. Maybe not. Time is as much a component of friendship as shared interests, values or attitudes.

The session finished. It had felt a lot like a box ticking exercise. Questions. Responses. Notes. Next.

The next session would be almost three weeks later. I got an email closer to the time:

“In most cases, our psychiatrist will tell you whether you meet the criteria for Autism by the end of your appointment.”

The expectation made me anxious. I hadn’t expected an answer so soon. At this point, I was already convinced that I was autistic. It would validate everything I’d come to believe about my experiences and challenges. And I would feel a more legitimate sense of belonging with the others I’d connected with in real life and online. It was becoming an essential part of the new identity I was building.

Not having had a sense of family or community growing up and the feeling of being from another planet made this more important. Especially returning from being on the road for 18 months and needing anchors again.

I’d overloaded the autism assessment with a lot of expectations around unmet needs!

Ironic, given that many had already accepted me as autistic regardless of the assessment outcome. And I’d also taken some online tests like the RAADS-R where I scored 161 out of 240, the autism threshold at 65. Or for alexithymia, which is the difficulty or inability to describe what you are feeling. Not lack of feelings, but hard to pin down what they are in the moment. Common among people on the autism spectrum and something I’d also struggled with. I scored 135 out of 185 on the alexithymia test, threshold at 113.

So a lot was pointing at this being a positive diagnosis after which I’d get my “badge.”

I went into the second session nervous. It was with the psychiatrist. 45 minutes, freeform and conversational, rather than an interview. My friend was also on this call. We discussed my past, present and mental health.

Then we reached the end of the call. There was no diagnosis.

The psychiatrist said they needed to confer with the psychologist. My case was complex and needed further analysis and deliberation before a diagnosis could be made.

I waited.

About a week later I got an email.

The verdict: inconclusive.

There were autistic traits but not enough to make an Autism Spectrum Disorder diagnosis. Developmental trauma was the complicating factor. For instance, did I spend hours sitting on the floor as a child making toys out of cardboard because I was autistic, or was it because I grew up in a cold dark flat without gas or electricity and wasn’t sent to school?

It seemed they couldn’t separate the neurological from the psychological.

They also said there were ADHD traits. Good thing I was already on a waiting list for an ADHD assessment.

This all left me frustrated. Denied and rejected. Who were these neurotypical (I assumed) people to withhold a diagnosis that had been plain and clear to other autistic people I’d met? Not to mention the various self-diagnosis tools and my own lived experience backing all this up.

There was a follow up call with the psychiatrist to discuss the outcome. I voiced concerns. How could they see past any masking I might be doing over a video call? Especially since I go into a sort of work mode on calls. I could hear myself going through stages of denial, anger and bargaining.

The psychiatrist acknowledged that the format may not have been suitable in my case, given the history of complex trauma. The FAQ on their site says they don’t take cases involving complex trauma, instead referring them to providers who can do face-to-face assessments. If they are able to screen for complex trauma in advance from the questionnaire that is. Which in my case they hadn’t been able to.

The psychiatrist echoed this and recommended I look into a face-to-face assessment over multiple days involving task completion and under observation. A format such as ADOS. Others I know in the autistic community have made similar recommendations.

I digested all this. I’d rushed through the process trying to get a badge and lost sight of what I had been trying to achieve. What this journey had been about. Why had I wanted this so badly?

Acceptance and belonging of course. My lifelong search to not feel like an outsider. An imposter.

I was increasingly reframing my life through the lens of autism and neurodivergence when talking to people and in my writing. But I kept looking over my shoulder — surely I couldn’t just go around calling myself autistic?

I’d been sharing this journey openly during the before, during and after my assessment with friends and wider online. I’d been seen and accepted by those I’d met on the road and those I’d connected with online. My existing friends, even those who didn’t fully understand, supported me. It didn’t matter to them whether I was autistic or not. I was still the same person they knew and cared about.

So if autistic people accepted me and my friends always would regardless of any of this, who was I actually looking for acceptance from?

From myself. I didn’t accept me. I was the one with the doubts, needing reassurance and validation. It wasn’t enough to have the evidence from self assessments or the acceptance of other autistic people. Not to mention my inner world and experiences matching everything I had learned about autism. I realised this was all enough. Even if I couldn’t fully fit the diagnostic model and methods of a particular provider.

I was autistic.

So it turns out the assessment had really been about the friends I’d made along the way. And self-acceptance.

With that, I realised I had all I needed. I had to go on this journey to understand that. So time and money well spent.

I will look into a thorough in-person assessment at some point in the future. More for a greater understanding of my autistic traits than for certainty or validation. I no longer need those.

I’ve arrived at a better understanding of myself, made new friends and found community. As one of the people in that community said:

“You’ve found your tribe.”

I have.

One part of my journey was over. Another was about to begin.

AuDHD

The ADHD assessment, which hadn’t been on my mind, would come through only weeks after the autism assessment finished. I would go into it without any expectations, unlike the autism assessment. I wasn’t looking to get anything out of it and was simply curious.

I was suddenly and unceremoniously diagnosed with ADHD at the end of the video call. No waiting. No deliberation. A reversal of what had happened with the autism assessment!

Then over the weeks and months the missing pieces of my life started falling into place and I would be faced with having to reprocess my whole life once again. A lot of my childhood and later struggles would be put into a new context.

Autism and ADHD. The portmanteau AuDHD covers this blend. Not distinctly autism nor ADHD but an amalgamation of the traits of both, manifesting and interacting in interesting ways.

I will cover the ADHD diagnosis and what it means for me, along with the many realisations I have had since, separately. And the trial of ADHD medication I was offered. The medication suppresses my ADHD and seems to bring my autistic traits to the surface in ways I have not experienced since my teens. So as I write this I am enjoying an “autistic renaissance.”

What better way to document my journey through autism than to be fully restored to my autistic self?

This may change depending on medication and dosage.

But that is all for another time. For now I’ll end by saying I now know which planet I am from: this one. There were others like me here all along. I was too busy hiding behind a mask to see them. Maybe they were too.

It’s good to put the mask down. I may use it again, now and then but I no longer need it.

Thank you for reading.