Finding out I’m autistic in my 40s

It’s been a transformative year for me

Last spring I followed my newly-discovered intuition and enrolled on a coaching programme with One of Many. This spring, having completed the programme, I found myself adjusting to three new identities:

Certified coach (yay!)
New business owner (eek!)
Autistic woman (that was a surprise!)

I’ll write more in another post about the journey that led to my autism diagnosis. For now I want to share a little about what it means to me and why I’ve chosen to make it public.

Life as an undiagnosed autistic woman

I’ve spent most of my life feeling “different” without knowing why. In my teens and 20s I would look at anyone around me—in real-life or fiction—and wish I was them instead of me. Outwardly I was doing ok, but I found it hard to make friends. I constantly felt anxious, overwhelmed and exhausted.

Back then I often relied on music to shield me. Both from the world and from my own inner thoughts and feelings. I would panic if I couldn’t find my iPod as I was leaving the house. At the time I thought it was because I’d have to spend time alone with my thoughts, and that was scary. Now I know that my earbuds also helped reduce sensory overwhelm from the sounds and bustle of my commute.

(At that time I would also spend hours organising my music in iTunes. Which—as I keep saying to my husband lately—was probably a clue!)

Realising I might be autistic

As I’ve got older I’m much more comfortable with who I am. Lots of inner work in my 40s has hugely reduced my anxiety. In Autumn I went away for an empowering training week with my coaching cohort at One of Many. I left on a real high, feeling like I’d mostly conquered my demons. I was ready to take on the world!

The next day I happened to read an article by a woman who had recently been diagnosed as autistic. And I felt what I can only describe as an “oh!” through my whole body. So much of what she was saying resonated strongly with me. I suddenly saw myself with clarity. I realised that despite feeling much less anxious than I used to, seemingly minor things still often overwhelm me. And my mind still tends to go blank in any situation that calls for small talk.

In the past I might have ignored that whole body feeling, told myself not to be silly, and carried on with my life. But recently I’ve learned to pay close attention to those kinds of sensations. The times when it feels like my body knows something that my mind hasn’t caught up with yet. Because it turns out that my body always has valuable information to give me if I’m willing to pay attention.

Learning what autism actually is

When I first started wondering whether I might be autistic, I didn’t know much about autism. So I quickly dived deep into research. (That was probably another clue!)

I’ve learned that autistic people have brains that work differently from allistic (not autistic) brains. A commonly used explanation is that the two types of brain are running different software to do the same jobs. Just like Apple and Android phones appear to function in a similar way, but use different operating systems beneath the surface.

To get technical for a moment, an autism diagnosis will be given where:

There are differences (described as deficits) in:
- “Social communication and social interaction” (e.g. making eye contact, recognising and responding to emotions, the flow of conversation)
- “Restricted, repetitive patterns of behaviour, interests, or activities” (e.g. repetitive rituals, sensory differences, hand-flapping or other body movements, deep interest in a small number of topics);
The differences have been present since childhood; and
The differences have a tangible effect on “daily functioning”

How these differences show up in autistic people can vary widely. One person might have a strong aversion to certain textures, where another seeks them out. Or one autistic person might find it hard to empathise, where another has hyper-empathy. From the outside it might be hard to tell the difference. Especially when a hyper-empathic autistic person has learned over a lifetime to suppress their emotions. Or when a flood of emotion causes them to freeze.

Different brains are different!

When I was growing up in the 80s and 90s, no-one was really talking about personality differences. I assumed that everyone was having broadly the same experience as me. Whenever I was struggling—which was often—I wondered what was wrong with me.

Learning about introversion and extraversion in my mid-20s was a HUGE eye-opener, and made sense of a lot. Maybe all the other introverts just weren’t at the parties? That would explain why everyone there seemed to be enjoying themselves! Reading Susan Cain’s “Quiet” blew my mind. Suddenly I had an explanation for:

my quiet voice
why I find it easier to find my words when I’m writing than when I’m speaking
why I prefer to spend time with friends in ones or twos instead of larger groups
my preference (need) to spend a lot of time with no people around at all.

Learning the term Highly Sensitive Person as few years later was another step towards understanding myself. It turns out that some people are more sensitive to sensory input that others. That explains why I find busy or noisy environments harder to cope with than many other people. It’s not that I’m somehow weaker than them, I’m actually having a tangibly different experience from them.

Deep-diving into learning about neurodiversity has given me a new, and much more detailed, perspective. It makes so much sense that everyone’s brains work a little differently—that we’re not all having the same experience. And that’s why we all react in different ways to the same situations.

Learning to take care of myself

Younger me believed that all brains were broadly the same. I looked to other people to understand what I was “supposed” to be able to cope with. As a result, I would:

Agree to do too many holiday activities
Say yes to more work than I could manage
Plan too many things in a day or a weekend.

Then I would end up exhausted. In recent years that meant not being able to be fully present with my daughter. Often by the time her bedtime came round my brain was desperately seeking rest. Without understanding why, I’d find myself scrolling my phone in a bid to disengage. Or I’d get frustrated and snappy with her—turning into the dreaded Scary Mummy.

Since my diagnosis I feel much more confident in listening to my own limits. Instead of expecting to be able to keep up with other people, I’m learning how to look after myself properly:

I’m more likely to simply say “no, I can’t do that” if I know I’m in danger of over-scheduling.
When we have guests staying over I go to bed early instead of staying up to socialise. I’ve learned that I need that extra time to myself to unwind.
Earplugs help stop noisy environments draining my energy.
I deliberately take time out to rest after being with people, or spending time in a busy environment.

Becoming more aware of my impact on others

My diagnosis has given me clarity in other areas too. I have an explanation for some behaviours that I used to avoid thinking about due to shame. That means I can work with my reality and find ways to mitigate negative effects on other people.

Over-stimulation makes my voice comes out inaudibly quiet. In the past when someone couldn’t hear me I would try to push a louder voice out. But I’ve learned that I sound angry when I do that, even when I’m not. Now when it happens I can choose to either withdraw and rest, or to communicate in different ways. Which can look like choosing to text my husband even when he’s sitting right next to me.

Sometimes I sound rude or angry when I really don’t mean to. And my husband sometimes struggles with my bluntness. Now, if I’m about to say something I think might sound rude, I tell him my intention first to minimise misunderstandings.

Instead of staying in social situations when my social bucket is full to overflowing and I’m no longer able to take anything in, I choose to extract myself quickly and politely before I reach my limit. In the past I would have stayed in the situation and become increasingly overwhelmed and disengaged.

Why I’ve chosen to make my autism diagnosis public

I couldn’t stop smiling when the psychiatrist confirmed that I am autistic at the end of my assessment. I felt so validated. Finally I knew my lifelong experience of feeling different wasn’t just in my head.

Then I shared my news with a few people:

Some responded very positively or with curiosity.
Some shared that they knew or suspected that they were autistic too. It turns out we flock together!
Other people responded with confusion or scepticism.

Those last responses have left me feeling wary about being open about my diagnosis. There’s undeniably a stigma around autism, although increasing awareness does seem to be shifting that recently.

In my first draft at the top of this post I wrote “neurodivergent woman” instead of “autistic woman”. That label felt safer and less vulnerable. But it also feels like using it in this context would feed into the stigma.

And that’s exactly why I want to share this about myself. I believe that the more people who feel able to be open about their own autism, the less stigma there will be. As I have the privilege to be able to do this relatively risk-free it feels like it would go against my values to not be open about it. Also I’m terrible at keeping things secret when I find them interesting!

Other women sharing their own life experiences have hugely helped my process of self-discovery. That’s why I started this blog—I hope that sharing my own story will help others in turn.

My way forward—choosing to work with late-identified neurodivergent women in my business

Ultimately, although I do feel vulnerable sharing this information about myself, I’m excited about the next chapter in my life. I know moving forward armed with this knowledge is going to change my life in ways I can’t anticipate yet. I have no intention of letting my diagnosis limit me in any meaningful sense. Instead I intend to learn to work with my brain instead of against it, and I believe that will open up new and exciting possibilities for me!

I wanted to become a coach to help others overcome similar struggles to those I’ve been learning to overcome myself. Now I’ve realised that doing life as an undiagnosed autistic person is in large part responsible for those struggles.

I’m feeling strongly pulled to work with other autistic women in my coaching business, especially those who realised this about themselves later in life. More to come on that front soon!