Becoming Neurodivergent: being diagnosed with dyslexia, ADHD and Autism in my 40s!

Edit: since writing this post back in 2022, I’ve qualified as a counsellor and therapist who specialises in working with ADHD counselling clients as well as Autistic counselling clients. If you’re looking for a therapist as someone who’s neurodivergent, get in touch. The following is a reflection of my experience of finding out I am dyslexic, ADHD and autistic.

There is a scene in Fight Club where Jack, the narrator, realises that Tyler Durden is him. Tyler Durden is a hallucinated projection from Jack’s psyche and this realisation leads him to understand that everything that he thought Tyler had done was actually done by him. We see a flashback sequence where he witnesses a whole host of significant events in the first person, having previously experienced them as though someone else was responsible.

This flashback sequence feels a little bit like my current experience with neurodivergence. The past few years have involved recontextualizing myself and my life experiences repeatedly. I was diagnosed with Dyslexia and ADHD aged 40, and then I received an Autism diagnosis aged 41.

This new understanding of myself has meant viewing everything I know about myself through a different lens. That’s been empowering in some ways, but incredibly sad and challenging in others.

graphic with: This new understanding of myself has meant viewing everything I know about myself through a different lens.

This month is Autism awareness month, so it feels like a good time to share some thoughts. Whenever I talk about my experience publically, people ask how I got to this point. I’m also aware that other people talking about their own experiences played a huge part in my many lightbulb moments that made me realise I was ADHD and Autistic.

A huge caveat: I am just one person and neurodivergent people are not a monolotih

This is entirely written from my personal perspective. That perspective is from someone who didn’t have a clue that they were ADHD 18 months ago, and only realised they were Autistic a matter of months ago. This context is important. I do not speak for the wider neurodivergent community. I have not even scratched the surface in terms of my own learning around social-justice and disability, and have very little knowledge around social-justice issues when it specifically comes to neurodivergence. I definitely plan to rectify this, but at this stage I am trying to understand and integrate my own experience.

My own experience is very specific and unique to me. Experiences around symptoms, presentation, struggles, support needs, access to support, access to diagnosis etc are vast and varied. While I have been able to obtain a diagnosis, self-diagnosis is valid and necessary. I have shared some resources at the bottom of the page, if you’re on this journey and want to find out more.

graphic with My own experience is very specific and unique to me. Experiences around symptoms, presentation, struggles, support needs, access to support, access to diagnosis etc are vast and varied.

I also acknowledge that intersectionality impacts every aspect of experience. I am white, able-bodied, able to work, and able to advocate for myself in the medical system to a degree. That is not to say I haven’t struggled. I have. It has been and continues to be hard, but I am cushioned from some of the impact of my struggles because of the privilege I hold in the world.

My journey to get an ADHD, Dyslexia and Autism diagnosis

I’ve known I was probably dyslexic since my 20s. A university tutor told me they suspected dyslexia, but I dropped out before I could get tested. I did go back to higher education, but it was via distance learning and no one ever mentioned it again, so I cracked on, ignoring my underlying frustration with the things I struggled with.

In 2021, my 40th year of life, I went back to uni to study counseling. I’d had a fair amount of therapy prior to this, due to mental health struggles, and the profound effect it had on me made me want to dig deeper, and also to help others. I connected with the dyslexia team at my university and asked for an assessment. That coincided with a whole bunch of ADHD related content regularly popping up on my TikTok for-you-page (it’s not just about silly dances and lip-synching you know!). Those content creators talking about their experience of ADHD literally changed my understanding of myself, and I am so grateful to every human who shares their struggles so that other people can benefit.

During my dyslexia assessment, the educational psychologist also screened for ADHD and confirmed that I was ADHD combined type. The NHS wouldn’t accept an educational psychologist diagnosis, so I contacted my GP and started the process of getting a formal diagnosis. I was told it was likely to be a wait of at least a year under the NHS, but I came across another TikTok that talked about being referred under the NHS Right to Choose to Psychiatry UK. It took about six months to get from referral to being prescribed medication, via the NHS Right to Choose and Psychiatry UK. I was really lucky, as referrals via this route have snowballed, and the waiting list for the initial assessment is currently around 6 months.

Following my ADHD and dyslexia diagnosis, and further exploration of Neurodivergence (more TikTokers are owed thanks here!), I came to realise that the ADHD diagnosis didn’t entirely explain everything. The more I unmasked (I’ll talk more about this below) my ADHD, the more Autistic I felt. Statistics around ADHD and Autism suggest high rates of comorbidity between the two (from 30 - 70% from what I’ve read). I got to the point, based on observation of myself, and repeatedly taking the Autism Quotient test, that I was sure that I almost certainly fell within those statistics. I made an appointment with my GP and I waited. In the meantime, a family member received an Autism diagnosis which was further evidence for my suspicions, as Autism can affect people in the same family. In the end I decided to pursue a private diagnosis. I realise how incredibly privileged I am to be able to do this. I had my assessment and I was told that I am Autistic.

My lived experience as someone with dyslexia, ADHD and autism

It’s hard to know much or little to include here. I have lists and lists and lists of experiences that I wrote down pre-diagnosis, because ADHD people love to hyperfocus on things, and Autistic people hyperfocus on their special interests. I came into the process of getting diagnosed fully armed with as much information as possible, while still doubting myself at every turn. I’ve also experienced mental health struggles from a young age and my mental health is largely well managed now, but it’s taken a lot of work to get here.

graphic with I came into the process of getting diagnosed fully armed with as much information as possible, while still doubting myself at every turn. I’ve also experienced mental health struggles from a young age and my mental health is largely well

I am classed as “high functioning” a label which is problematic in a myriad of ways. Based on outward appearances, people assume I’ve got my shit together, that I’m resilient and that I cope with life’s challenges. In some ways that’s not wrong; I’ve been fairly successful professionally, and I am viewed, I think, as being competent, intelligent, and grounded. I see myself as those things too, but the world is designed for neurotypical people, and presenting in a way that is acceptable in a neurotypical world comes at a cost.

graphic with I am classed as “high functioning” a label which is problematic in a myriad of ways.

Spoon theory gives a really good explanation of this. Imagine everything you do throughout the day requires spoons. Something that takes ½ a spoon for a neurotypical person might take 3 spoons for someone with ADHD or ASD. Let’s look at taking a shower as an example. A neurotypical person might see taking a shower as a one step process, but my brain analyses every single step.

Where is my towel? Is the heating on? Have I allowed enough time for this activity? What would happen if I didn’t do it? Ok, I need to start the process of having a shower now. No really, I need to start. Why can’t I start?! Will I be ok with the sensory stimulation that comes from being clothed then being unclothed? Will I be ok with the sensory stimulation that comes from being dry then getting under the water? Will I be ok with the sensory stimulation that comes from getting out from under the water into the air? Ok what steps do I need to take to wash myself? And my hair? And all the while I’m playing music through my bluetooth speaker, because being in the shower is mentally understimulating, but sensory overstimulating… And then there’s the conditioned urge to internalise every aspect of this process, to appear ‘normal’, because other people don’t get it. Even something as simple as taking a shower is exhausting. And the amount of spoons it takes to shower is significantly affected by how tired I am, where I am in my menstrual cycle, and my current emotional state.

That’s just one example, that links to just a few very distinct aspects of my experience. Just existing comes with a whole host of struggles, from executive function issues, to sensory processing issues, to communication confusion. Many of my neurotypical-appearing behaviours in the world are learned, orchestrated, and rehearsed. If you check the NHS website’s autism symptom list and ADHD symptom list, I experience pretty much all of them to some degree, yet no one in my life realised (not even me!). This is, I suspect, partly because I have learned to mask so well, and partly because neurodivergence profiles, even when being diagnosed as an adult, are based on research carried out on male children.

Why I sought a diagnosis for my ADHD, autism and dyslexia

A number of people have asked me why it was important to me to seek a diagnosis, and my answer is this: when you’ve spent your whole life gaslighting yourself about your own lived experience, a diagnosis forms the basis for better self-awareness, and also self advocacy. Under a medicalised health model, diagnosis is necessary if you want to access support and/or medication. I am currently taking medication and it really helps with some (but not all) of my ADHD symptoms, and I receive academic support through my university.

graphic with A number of people have asked me why it was important to me to seek a diagnosis, and my answer is this: when you’ve spent your whole life gaslighting yourself about your own lived experience, a diagnosis forms the basis for better self-a

I had a period of feeling grief following my diagnosis, because I wonder what my life would have been life if I could have put support structures in place early on. If I’d been able to take medication for my ADHD earlier in life, what might have been different? If I’d been able to advocate for myself and my needs earlier in life, might it have been easier? I also believe that, in the words of Mark Nepo, “accepting what we’re given is a practice in being present to everything beyond us, that lets us become intimate with the nature of life.” I am ADHD, I am autistic, I am dyslexic and I am learning what that means for me.

graphic with in the words of Mark Nepo, “accepting what we’re given is a practice in being present to everything beyond us, that lets us become intimate with the nature of life.” I am ADHD, I am autistic, I am dyslexic and I am learning what that mea

I’ve shared a video below with some thoughts about disability and the way it’s viewed, from Autism researcher Jac den Houting. Jac is autistic and their work investigates structural and systemic inequities in autism research. As they say in the video, “I’m disabled. I’m not disabled by my Autism, I’m disabled by my environment”.

Finally, you’ll find some resources at the bottom of the page for anyone exploring autism or adhd.

Resources for ADHD and autism exploration

Tests

Autism spectrum quotient test - a self-administered questionnaire used to measure autistic traits in adults (age 16+) with IQ in the normal range (IQ >=80).
RAADS-R test - a self-report questionnaire designed to identify adult autistics who “escape diagnosis” due to a subclinical level presentation.
ADHD self report scale test

Resources

ADDitude Magazine
Neuromancers Magazine and community
Embrace Autism