Autism and my road of discovery

Today is supposed to be a 'reboot' day, but I can't settle and find myself mentally fidgeting.

I've been mulling over how to approach something without needing to tell people individually. After some hit and miss encounters, I decided to write this blog for LionHeart. So here's the thing...

I am autistic. 

This is something I've always been but, like many, had fallen under the radar. In fact, my road of discovery didn't start until last October (at the age of 32), when I completely fell apart.

There was the emotional overload of the Covid pandemic, during which I was made redundant, an ongoing neighbourly dispute which had led to police involvement, and our home being turned upside down for a long-awaited renovation project.

It had all become too much and I pretty much ceased functioning properly. I just about kept it together for work but, looking back at my data for those couple of months, it was obvious I'd taken a big hit. I was having almost daily panic attacks, not really sleeping and veering between not eating because I was so anxious or completely comfort eating.

I couldn't get on the underground without panicking, I couldn't stand near full height windows without my knees giving out, and meetings - even with the loveliest colleagues and clients I knew - became fraught with the risk of me hyperventilating.

'My anxiety levels were spiralling'

When Covid first hit the UK, I was one of many to be furloughed and later made redundant. I didn't work for seven months and then got a job in a charming start up. At the time I concluded another blog for LionHeart saying I'd found my place, but the reality was it wasn't a very good fit and I left after six months.

I've been with my current company for 15 months and this time can genuinely say I'm very happy where I am. But, somehow, it was like my mind didn't get that memo and I found my anxiety levels spiralling.

I got help (and am still getting help). I was advised that I was burnt out and had pretty much no resilience left. However, unlike previous attempts at handling my anxiety symptoms, a psychologist I was seeing asked me a series of questions about my thoughts and feelings towards social encounters and sensory exposures. She paused, and said, "You must be wondering why I've gone down this random line of enquiry."

I nodded and then she said something that would completely change my outlook on my life.

 "Jen, have you ever considered that you might be autistic?"

Honestly, while I had always felt out of step with people around me, I really hadn't.

After the session I started researching and used some recognised platforms to complete online questionnaires, which kept coming back with the same result - that I could indeed be autistic.  

I then started researching female autism, because it turns out, women have a tendency to be diagnosed later in life, because female autism does not share all the same traits as male autism. Where autistic boys (some, not all) are more recognised for having massive emotional meltdowns, or being socially unaware with an obsession for trains (see Sheldon stereotype in the Big Bang Theory), autistic girls would often be introverted and a bit awkward, but still try to fit in with social conventions, therefore not draw the same levels of attention.

This is known as masking, which is where autistic people learn how to interact with neurotypicals by learning 'cues', practising conversations and actively thinking about body language and eye contact.

The answer I'd been missing?

I decided to pursue testing; outwardly saying it was worth ruling out autism, but inwardly hoping this was the answer I'd been missing all this time.

It wasn't an easy process.

I started by contacting a GP, and had my first insight into why women tend to be diagnosed later in life. Despite explaining a psychologist had advised getting tested, the doctor asked me why I thought I might be autistic.

As an autistic person, this completely threw me as I had thought 'because the psychologist advised me to' would be enough by way of explanation. Fumbling around for some words, all I could really come up with was I was very introverted, don't like bright lights and socks seams are unbearable.

He then asked whether I was educated, whether I had a job, and whether I was in a relationship, and on the basis I said yes to all three he concluded in two minutes of speaking to me that I was not autistic.

He then ended by saying, even if I was, would I really want a label that could affect my employability in future? I came out feeling devastated, and like a complete idiot.

After a few days and some reassurance from people who knew better - and know me better - I decided to look into going private, finding a psychologist through the National Autistic Society who had experience in diagnosing autism in women.

In our initial call she explained that the diagnostic criteria is very restrictive and that sometimes she'd seen people she would consider to be on the spectrum who don't fit all of the criteria and therefore couldn't have a full diagnosis. But she said going through the process often still helped them understand themselves better and learn ways to manage life to fit their needs. I decided to go for it, despite still feeling knocked by the previous experience.

The assessment process was intense, involving a lot of questionnaires and 4.5 hours' worth of interview time via video link. I came off the first 2-hour session and fell asleep for a further 2 hours because I was so mentally drained.

After this, there were further questionnaires, a second assessment and a feedback session alongside my parents, providing corroborating anecdotal evidence from my younger years.

'My diagnosis has been, mostly, life affirming'

The psychologist's conclusion was that I met the criteria required for a full diagnosis of autism, with a recommendation to consider a follow up assessment for ADHD, as it turns out I share a lot of traits with the inattentive ADHD model.

The realisation that I am autistic, or neurodivergent, has for the most part been life affirming.

I recognise where I struggle and how that's affected me in the past. Somehow, it's helped me to start forgiving myself for feelings of embarrassment and failure with this fresh knowledge that I genuinely couldn't have helped it.

It's also made me proud of what I have achieved in my life - despite being 'wired' differently. I struggle to say it, but I am good at what I do, and I have progressed because of this, and I still intend to go further and be better.

But a late diagnosis is also tinged with a sadness of what could have been, if I'd known sooner: would I have done better at school, would I still be suffering the same bouts of extreme anxiety? Maybe I could have had support and developed better coping mechanisms than simply 'masking', which research shows to have an immensely detrimental effect on a person's mental health.  

I must acknowledge that I'm incredibly lucky to have been able to go privately for my assessment, with NHS waiting lists currently around 3-5 years. I'm even more grateful to my employer for fully supporting the process, even funding a significant proportion of the cost involved.

It's still early days for me and I guess I'll be working things out for a while. But, as someone very dear me has said, I can finally stop fighting, and just be me - and I think this has so much potential. 

Jen Hobart MRICS is an associate building surveyor, APC counsellor and RICS chairperson. Having had support from LionHeart, she became one of our mental health and APC ambassadors, saying: "I had to overcome challenges during my career and APC due to my long standing anxiety disorder and I hope that by sharing my experience I am helping to create a more open, safe environment for those who are struggling."

Find out more about how LionHeart is supporting neurodiversity in the workplace