Updated: Mar 23
My journey to late diagnosis of ADHD and Autism, AKA one of the best things to ever happen to me!
What's wrong with me?
For my whole life I felt there was something wrong with me. On the surface, I got on with things and tried to push down this pervasive feeling of wrongness, but, if you scratched the surface of Mary just a little bit, below you would have found, a very sad, ashamed and struggling woman that no amount of therapists, self development (or self-medication) seemed to be helping.
I never knew why I found life so hard; I had no explanation so I internalised the blame as shame. The only explanation I could devise for my struggles was that I was in some way deficient and hopeless. Since early childhood, I had no help with my struggles and had no framework with which to understand them. By the age of 17 (and perhaps even earlier) I had debilitating depression and anxiety, and was dissociating myself from the overwhelm and childhood trauma with binge-drinking and other harmful distractions.
Some people might think that being labelled with Attention Deficit Hyperactive Disorder (ADHD) and Autism is a sad or negative thing, after all, there can be much stigma and misunderstanding that can come with the labels. Why then do I consider my dual diagnoses one of the best things that has ever happened to me? Well, neurodivergent people understand that we are 'different' not 'worse'. We are proud of who we are and realise that in being given a label nothing essential about who we are has changed. I am exactly the same Mary post-diagnosis as I have been my whole life, only now I understand and accept myself a whole lot better.
I mean, is the problem with us anyway? If society was set up for the minority (neurodiverse people), we wouldn't have an issue; life would be pretty breezy, but of course society is not set up for us, it is set up for the majority. That is ok, but it does mean people with ASD and/or ADHD need help, supports and adjustments to do well!
A pretty standard response when telling a fellow neurodivergent of your diagnosis is 'congratulations!' They whole-heartedly celebrate with you, figuratively popping the champagne to welcome you to the fold. There are some pretty great things about being diagnosed with ADHD or autism - it allows you to connect with 'like-minded' people (pardon the pun), gives you tons of self awareness (and self-forgiveness) and allows you to start setting up the strategies and supports you need to function with the same level of success as all your neurotyp friends out there.
Finally getting diagnosed with ADHD
Before diagnosis, I tried really hard at life but to not much avail. I was getting by, but I spent a lot of my life deeply unwell and unhappy. I worked extremely hard to turn this around, dedicating my life to self-development and soul searching. - I didn't find many answers. Finally, when I was 34 I was thrown a fricken bone, and a huge piece of the puzzle dropped in.
While I was researching and searching for answers to why my daughter Pearl was having some developmental difficulties, I stumbled across a description of 'ADHD'. Although Pearl also did a good job at hiding her struggles, it was evident that there were things she just wasn't 'getting' at the same rate as other children and I was feeling really frustrated and confused by some of her 'naughty' behaviours. I also noticed her growing confusion, shame and anxiety - akin to what I felt as a child.
While reading about ADHD online with the intention of trying to understand Pearl - shock, horror, the description sounded strangely fitting to me also! How could this be when me and my daughter were so different? She was extraverted, I was introverted. She was rough and tumble and I was quiet and thoughtful, but nevertheless there were a barrel of signs listed there in black and white that I couldn't deny, and they applied to us both! I began to ask - could both me AND my daughter have undiagnosed ADHD? Around the same time, my holistic counsellor (and one of my all-time besties) Jasmine, was diagnosed with ADHD and recognised the signs in me. She was the first person in my life to pick up on it despite years of going to various therapists!
After getting my head around the shock of the idea and the label (" I am a professional organiser with ADHD?!"), I began researching the somewhat complex process of how get diagnosed. About a year later, my daughter and I saw respective specialists, and surprise surprise, were both diagnosed with combined type ADHD ( the inattentive & hyperactive subset of ADHD). Suddenly my life made sense; I now understood why I had always felt that I wasn't quite right. This feeling had affected my sense of self and safety in the world and led to unconscious 'masking' - the determined effort to hide my struggles and deficits, and pretend that I was coasting along just fine. I didn't want anyone to know how hard I found life and keeping up with them, lest I be exposed as a fraud and as a hopeless person, so I hid my struggles from the world.
Post diagnosis, I know I am not a hopeless person, in fact I am quite the opposite, I am amazing ("praise emoji"). As a child and through every difficult life transition, I learned to function 'successfully' with out any specific supports or self-awareness to get me by. And I had everyone fooled (well I thought I did); I was very good at pretending I was winning at life - points for trying! What a relief to know there is nothing 'wrong' with me, my brain just functions differently to the average brain - I am neurodivergent! No biggie, just time to unpack 34 years of grief and shame, and rewrite every story my ego had formed to protect my identity ("shrug emoji").
My autism diagnosis
As I continued along my journey of self-discovery, I was urged by many people, including my neurodivergent peers and clients, Pearl's paediatrician and my psychologist to look into the possibility that Pearl and I are both also on the spectrum i.e have Autism Spectrum Disorder (ASD). I had a lot of resistance to this to begin with, due to the fact that while ADHD is seen as a 'condition', autism is often seen as severe developmental disability (and it certainly can be) and all the negative societal connotations that go with that. However there are also positives to an autism diagnosis; services like schools, workplaces and governments are more likely to take your challenges seriously and provide you with the supports you need to get by. For me, being diagnosed was firstly about self acceptance and enlightenment but as the mask fell further away, and I was able to be more honest with myself, I realised I was really struggling without any disability supports in my life.
Also, after I had addressed my more severe ADHD symptoms better (such as impulsivity and hyperactivity), I had noticed other challenges that were not so clearly explained by a ADHD diagnosis. Things like my need for order and predictability, the social challenges of my younger years, difficulties maintaining an active social life or travelling, trouble listening to people talk about topics that didn't wildly interest me and making small talk, my tendency to harp on in detail about my own interests, my extreme sensory issues, my stellar organising abilities, obsessive-compulsive tendencies and rigidity towards having things just 'so'.
So, just a matter of months ago we took the plunge - Pearl and I went through the massive process of being assessed for autism. Pearl was assessed on a Wednesday evening and me, the following morning, meaning I took part in over 7 hours of interviews over a 24 hour period! The process was emotionally, mentally and financially draining, involving much evidence gathering by experts, most of my emergency savings and the rehashing of a lot of childhood trauma and suppressed memories. However, undergoing assessment was one of the best decisions I have ever made....
The diagnostic team confirmed that 'yes' I was 'very autistic' with a smile at my disbelief. After being in denial about myself for so long, it was hard to be 'real' and unmask during the assessment process and tell people all the things about myself I had kept hidden (along with a high level of self-denial at times). There was also the fear that I wouldn't be taken seriously because for my whole life, my struggles had been ignored, denied or explained away with hurtful labels like 'lazy', 'spacey', 'oversensitive' and 'naughty'. No one realised that my periods of extreme withdrawal into my own world, shyness, emotional overwhelm and highly thoughtful, imaginative and insightful nature pointed to ASD. Lack of awareness of the signs of autism, particularly in girls (who are often better at masking and mimicking neurotypical behaviours) meant that I had flown under the radar.
The Pros and Cons
Being neurodivergent has its strengths and weaknesses. I am a a profuse thinker, seeing the world and its connections in a unique and multifaceted way. I can see layers and complexities that not everyone notices and pull them together into a bigger picture. I am authentic and honest and don't have the ability to 'artifice' how I feel or think, I am highly empathetic and intuitive (yes a lot of autistics are despite the stereotype!) and I have an entrepreneurial mindset, driven by a deep sense of social justice. Neurodivergent people are often fearless change makers and I believe we are here to shake things up (just think of Greta Thurnberg, Grace Tame & Hannah Gadsby for example).
However, neurodiversity also comes with its struggles - I find it hard to concentrate unless I am hyperfocused, my brain is overactive, constantly distracted, impulsive and easily bored, I suffer or have at some point suffered from chronic insomnia, pre-menstrual dysphoric disorder, anxiety, depression, leaky gut and rejection sensitivity dysphoria. I compulsively interrupt people when they speak, have difficulty remembering and tracking dates, need to use my fingers to add up (dyscalculia), I get brain fog, sensory overwhelm and suffer from angry meltdowns as a result, just to list a few of my struggles.
While I am really good at things some others might find challenging like writing this blog and being a strategic thinker (me so smart), ironically, I am often overwhelmed and paralysed by everyday mundane tasks that most people just get on with without a thought (me so dumb lol).
I can't do as much as the average person, and I get confused, overwhelmed and burned out if I try.
Onwards and upwards
To tell you the truth, I am still processing the autism diagnosis and I don't completely know what it means for me yet, and how much I need or want to wear the label. This is the first time I have directly owned the label or spoken publicly about my journey. However the knowledge that I am autistic has so far been only beneficial. It is helping me learn even more about myself, seek formal supports for myself and my daughter and connect with beautiful communities. I am open minded as to where this awareness that 'Mary is autistic' might take me going forward.
On the other side of diagnosis, I finally comprehend and see myself. I have spent significant time grieving and reframing my entire life and identity (more on that another time), and replacing them with better stories. From doing the work, a deep love and appreciation for myself has been born.
I am grateful and proud of all I had been able to survive and achieve without any specific supports, resources or knowledge. I have developed some impressive coping strategies and skills to 'hack' my executive functioning and I now help dozens of clients to live their best life through my work as a Professional Organiser.
I have healed on a deep emotional and spiritual level and am coming back deeper to my essence with every day - rediscovering my creativity, hope and gifts and sharing them more and more with the world.
My story (or something very similar) is also the story of countless other neurodivergent adults who also flew under the radar as kids and never got the gift of diagnosis until mid to late adulthood. Missed diagnosis is particularly common for girls who don't always display the typical 'boy-like' signs of ADHD and autism like disruptive behaviour and difficulty acting 'appropriately' in social or educational settings (because they are better at 'masking' their difference and internalising their struggles). However our understanding of neurodiversity is thankfully changing as we learn about the different ways in which it can present in individuals. This is why we are seeing so many people pop up and announce 'I am autistic' or 'I have ADHD' and it is a good thing! The more we can understand ourselves, the more likely we are to be happy and healthy and reach our potential.
The more people who are shining their unique light and talents, rather than wasting away with chronic illness and defeat because they don't have any help or understanding of their struggles, the better.
Let's embrace each other's differences and support each other to thrive within them - they can be a massive gift to society. If we celebrate and reframe neurodiversity as some kind of wonderful, then we will also value more people and allow them to shine their uniqueness out into the world. The world will be better for it.