I Was Diagnosed Autistic at 37 - This Is My Story

A checklist of symptoms and how they finally added up.

Jun 07, 2021

All my life, I’ve felt different. Weird, bewildered, unfeminine. I’ve watched from the sidelines and waited to understand how to join in. I’ve worried and fretted over rules other people seem to know instinctively. I’ve literally sweated over things other people barely notice.

And all my life people have insisted there’s nothing wrong with me.

You just need to try harder!

Go easy on yourself!

Have more confidence!

And so I struggled along. Getting bashed about by obstacles no one else could see. Dusting myself off and trying all over again the next day.

Except for when I couldn’t. Because I was exhausted.

Early last year, I had one of these episodes of exhaustion. Anxiety so strong I couldn’t manage my responsibilities and was forced to ask for help.

After months of searching for the reason why I was struggling to cope. After requesting and insisting and pleading and complaining, I was finally given a diagnosis that made sense.

It turns out I am Autistic.

Here are some of the specific things I struggled with, that finally led me to this answer.

Social phobia

When I was a kid, I was afraid whenever the phone rang. My stomach churned, and I felt sick.

What if it’s my best friend? I thought.

“Chel, it’s Lexi!” Mum would shout. And I’d slink to the phone, with a feeling in my stomach.

Lexi always made me call back, so my mum paid instead of hers. I felt this was unfair, but didn’t know how to say so without Lexi calling me a wimp. And so, heart racing, I would press the button and dial her number surreptitiously, praying that Mum wouldn’t notice.

That’s my earliest memory of social anxiety, and probably the most innocent example of how easily I could be manipulated. As I got older, my social anxiety got worse. I didn’t know how to say no. I had no internal boundaries. And so I constantly felt unsafe.

By thirteen, I’d found alcohol to help me manage the uncomfortable feelings, but I couldn’t be drunk the whole time. Mostly I had to go to school sober, and that was torture.

How could I learn anything when there were people everywhere? Not even nice people. Scary, mean people. I turned into one of them. I strode through corridors with my shoulders back, not making eye contact. Hiding in the middle of the pretty, popular girls, I prayed nobody would talk to me.

In French, I was so afraid of being picked on in class, that I stopped attending. Mme. Oiseau refused to recognize my lack of eye contact or the way my face turned red. She picked on me relentlessly, as though I were as capable as anyone else. Deep down, I knew I wasn’t, and I felt ashamed.

Eventually, I started to walk home before the lesson. The first time I realized there was nobody there to stop me, I felt such relief.

Alcohol abuse

University promised freedom but delivered new anguish. Now I was surrounded by people I longed to talk to, but I could only interact with them when drinking. Alcohol unlocked the confident, funny and irreverent side of me.

But like school, university took place in the day, and so I had to do it sober (bo-ring!). Many days I missed because I was hungover. Or because I simply didn’t have the strength to overcome the social anxiety the bus ride, journey and seminars, etc. triggered.

Around nineteen, I went to see the doctor.

“I think I have social phobia,” I said quietly, years of strength behind each word.

“You just need to have more belief in yourself,” he said. “Healthy women like you just need more confidence!”

He said I could try anti-depressants, but was uncertain they would work, and so I left empty-handed. Maybe I was overreacting as he thought. His pep talk gave me the self-belief I needed for about… 20 minutes. Until I had to be around people again, and I found that the pressure of company took away my ability to think.

Unless I used alcohol to loosen up, and that provided me with different problems.

Avoidance strategies

I continued with my avoidance strategies. I couldn’t go anywhere busy or with bright lights, which meant the indoor, daytime world was off-limits. By graduation, I had accepted the sad fact that I’d never have an interesting job or find someone who loved me because I was too weird. Some kind of alien freak. To take the edge off my failure to thrive, I drank. And I told no one. Beer removed my awareness of my troubles, and naturally, I worshipped it. But it made my problems worse, too.

By 33, my issues had gotten so much more pronounced that I was forced to get sober. This helped a lot, and I was now at least heading in a direction.

But still, something wasn’t right. I experimented with anxiety medication and anti-depressants and beta-blockers. I meditated and repeated affirmations and visited the doctor for the umpteenth time. I googled my symptoms and filled out an ADHD assessment.

And then, FINALLY, last month, I got an answer.

Symptom checklist

A friend introduced me to a Special Educational Needs Teacher friend of hers called Doris*. She allowed me to send her a series of (pretty weird on reflection) emails, explaining my specific issues.

Walking and talking with a friend, I will be too tuned into the chat to keep track of where I’m going or the appointments I have in the afternoon. The conversation will take all of my brainpower so there’s nothing left over to keep track of anything else.
I get lost every time I go somewhere new, and even sometimes in places that I’ve been hundreds of times. Like my hometown. For real.
I get exhausted, and it seems out of kilter with what I’ve done. I have to rest a lot because my nervous system feels like it’s going to force my head to explode like a soft egg.
I drank to ‘help’ with this, but drinking made my mental health worse, and even though I’m now four years sober, life often still feels unbearably overwhelming. I cannot keep up.
I ruminate before, during and after socialising checking for mistakes and ways to improve in future. Being with people is mostly the opposite of relaxing for me.

After reading all this, Doris asked if I knew much about Autism.

“It presents very differently in girls and women,” she explained. “And so it often goes under the radar. Females with high cognitive function become so good at masking, that their Autism can be hard to spot.”

On hearing about masking, I felt a thrill of recognition. All my life, I’ve observed the other girls, tried to act like them, and, generally, come up short.

Doris continued: “Some of what you are talking about sounds like you’re having some difficulties with executive functioning.”

Here’s a definition, in case you need it.

“Executive function is a set of mental skills that include working memory, flexible thinking, and self-control. We use these skills every day to learn, work, and manage daily life. Trouble with executive function can make it hard to focus, follow directions, and handle emotions, among other things.” — Understood

Learning about executive functioning difficulties, I felt my internal world sigh with relief. This explained why I found so many different things difficult!

My education into Autism began. Particularly Asperger’s Syndrome (a term no longer in use clinically and for good reason), and how it presents in women. And I related.

I related so much.

Assessment

The NHS waiting list for an Autism assessment was years long, and so I looked for an affordable private practice. My hyper-focus had kicked in, and I was obsessed. Could I really be autistic? Was that why life had been so hard? Was I actually disabled?

I found a place that let me pay in installments, where the diagnosis would be recognized by my work/the NHS, if necessary. The fee was 850 Euros, and I agreed to pay 100 Euros a month.

A few days later, I met a wonderful, gentle psychologist, who explained that we would have a series of conversations and see if my experiences mapped onto the Autism Spectrum profile.

Within two weeks, I had a formal diagnosis. “We would have been talking about Asperger’s if that terminology were still in use,” the clinical psychologist said.

I TOLD YOU THERE WAS SOMETHING WRONG WITH ME!

Post-diagnosis

After the initial exhilaration of finding an answer, I felt a lot of sadness. How might life have been if I’d had more support? How different might my relationships have been? Would I have wasted less time numbing myself with alcohol?

I feel proud of myself too. I’ve succeeded in various ways, despite feeling confused and overwhelmed almost constantly. I’ve felt seriously out of my depth in every period of my life, and yet somehow I’ve survived!

The process of getting sober taught me that it is possible to improve your life. Quitting booze was hard and messy but it was worth it. I hope this period, following diagnosis, will be similar.

As my lovely psychologist told me after my diagnosis: “It’s about feeling empowered to move forward in a positive way.”

By accepting my limitations and taking them more seriously, I can build a life that works to my strengths. I write these articles to spread the hope that you can too.

*Names have been changed to protect the wonderful.

News

I’m starting an autistic agony aunt column and I need your most pressing questions! I promise to keep your identity anonymous and to find answers from the most informed professionals if I have no idea what to recommend. Relationship, family, work, whatever you are struggling with, hit reply or ask in the comments. I will do my utmost to help you with wise and nurturing advice.

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