What it's like to be diagnosed as Autistic when you have ADHD

I wasn't prepared for how overwhelming it would be to be diagnosed with autism. I thought it would just confirm what I already knew, and wouldn't make much difference to my life.

I was wrong - it's rollercoaster. Here goes:

1) Relief

I was extremely lucky I cancelled my 'in-and-out' assessment and instead opted for Autistic Girl's in-depth analysis. This took longer, making my ADHD brain hurt, and was more expensive, but it was worth it. Right from the first free screening call I had with Dr Becky Quicke , lightbulb moments have been going off.

I completed 3 online assessments, finding that I was extremely monotropic, alexithymic, and had extraordinarily high rates of masking.

Then I wrote 39 pages of information, shocked at how much there was to say. I had a family member fill in an optional form about my childhood, which they basically answered 'normal, as far as I recall' to all of the questions. I felt the waves of Rejection Sensitive Dysphoria arrive, doubting whether I was just making it all up.

Then I waited for the assessment. During this time, I told a couple of people in my life. Their responses were the same: I couldn't possibly be autistic. Why did I want a label? Why did I get an assessment? What did I hope to get out of it?

I couldn't answer them, frustrated at the invalidation of people who were supposed to know me responding in the ways that I roll my eyes at everyday hearing about from others. I threw myself into making the Neuro-Affirmative course, creating frameworks for validating others' experiences that at least strangers might want to aspire to.

I then had a one of the most validating conversations I've ever had in a 3 hour call with Harriet Richardson . It felt more like talking to a friend than a clinical assessment, for a condition with diagnostic criteria based on little boys. I finished it almost certain that I was indeed autistic.

However, then the anxiety kicked in. What if I had just made it all up? What if it was just trauma? What if I had said too much - or too little? At the same time, bizarrely, I was asked to write for national newspapers about it. I became extremely anxious about the comments that would declare me jumping on a bandwagon.

On the day I found out, I obviously had a BBC Radio interview. I couldn't figure out how to handle this situation and the potential of potentially being wrong, having a meltdown. Obviously, I turned up and masked: all fine.

I needn't have worried. After a yoga class that afternoon I was doing one of my least favourite activities, drying my hair, when I found out that I was indeed autistic. I wasn't quite sure how to process this information, walking out of the gym a different person to the one who went in.

Most of all, I felt a sense of relief that I wasn't wrong. For years I had self-identified as autistic, and to be told otherwise would spark off a whole lot of uncertainty.

2) Anger

I wasn't expecting to feel so angry. I was angry because I felt like I couldn't talk to anyone about it. I was angry because I suddenly had a hyper-awareness of my vulnerability throughout my life, and a new lens for the trauma I'd experienced.

I was angry that I didn't get help sooner. I was angry at the world for being so neurotypical. I was angry at the people in my life for not noticing. I was angry at the systems that meant most women with ADHD would be unable to access an autism assessment like I had been able to do, paying for the privilege or facing years long waiting lists.

I felt years of repressed anger at the people who had hurt me, who had taken advantage of my vulnerability. All the situations I'd written off as somehow my fault for being 'stupid' or misunderstanding, when I'd been so misunderstood.

But most of all, I was furious at myself. I suddenly realised how my entire life had been a lie. How I had lied to everybody I knew, including myself. How of course other people, including my own therapist, thought I couldn't be autistic. I was really, really good at hiding it. I was just a shape-shifter, who adapted depending on the context required, meeting the needs of everybody but myself.

My ADHD had put me into so many situations over the years with zero regard to the harm I faced, a pure reaction to the autism that was screaming at it not to. It was like a light had been switched on, showing me how obvious the autism was all along, driving my every single move and interaction, my ADHD resisting against it.

I was angry that I didn't, and couldn't, protect myself better. I was angry at how vulnerable I was, am, and always have been - without even realising it. I was angry at how difficult it is to have ADHD and autism, a brain that is quite literally at war with itself, and not to know it for so many years.

I was angry at the complicated structures that surrounded every single interaction I had without even realising I was doing it. I finally understood what people meant by 'masking' on a literal level: my entire life was a mask. I was also irrationally annoyed that my surname was Maskell- literally a mask.

3) Withdrawal

My first instinct was to withdraw. I didn't know who I was anymore, and I didn't want to talk to anyone about it. I didn't want to hear how I wasn't autistic, or answer any questions.

I couldn't bear to put myself in any situations that were outside of my control, suddenly realising how utterly overwhelming I found it to speak at all. I didn't trust myself to see or talk to anybody without mentioning autism, and I didn't want any more misunderstandings. It was overwhelming my brain, all I could think about. I didn't want to mask anymore.

So I denied all invitations, and cancelled all of my plans, hiding at home for days on end. I started reassessing all of my relationships, questioning whether I was being taken advantage of and not realising it.

I didn't want to give anybody the chance to invalidate my experiences, which meant talking to essentially nobody. The Rejection Sensitive Dysphoria had kicked in to remind me how of when I needed help, how truly alone I was. I realised how my entire life had felt like living in a bubble that nobody else could see, every interaction causing so much energy.

However, the assessment had made me see how painfully bad I am at asking for help when I need it. How even as a child, if I was in pain or had a traumatic experience, I told nobody. I didn't see the point. What could they do? What would I even say?

4) Validation

Things changed when a friend in Australia messaged to see how my assessment had gone. She had ADHD herself, so I thought that she might get it. I told her, and she called me immediately. She said, 'I love you SO, SO MUCH darling - ADHD, Autism, whatever it is - you are still YOU no matter what, and that is a brilliant, wonderful human. How do you feel?'

The joy and acceptance and love in her voice that came across the phone made me feel like there was at least one human in the world who knew me, even if I no longer seemed to know myself. If I could take her response and insert it into the brains of everybody else in the world, it would be a much happier place.

Shortly afterwards, I realised that I'd forgotten her 60th birthday a couple of weeks earlier. I felt so guilty and terrible, but she told me not to worry about it at all. She got it! She said our relationship transcended things like remembering dates and birthdays. It made me want to cry to think that there were people out there who didn't see these things as important either in relationships. That they should be about accepting somebody exactly as they are, not whether they can remember a date.

I couldn't sleep, my brain feeling like it was going to explode as usually ignored memories shot around it. I couldn't stop thinking about how this explained everything. I had experienced nothing like this after my ADHD diagnosis, I'd largely ignored it and tried to figure out the medication.

However, I couldn't stop thinking about autism, my brain trying to make sense of it all. I couldn't stop picking apart ADHD and autism and trauma, trying to figure out what came first. So I wrote.

5) Hyperfocus

A few days later, I had written around 120 pages of a book - essentially, what is my AuDHD-ography. My entire life is sitting in front of me, waiting to be combed through and analysed and understood.

I could not stop writing. I was highly aware of how unhealthy this was, writing from 6am to 12am for days on end. I just woke up and wrote, my brain finally quiet. I remembered things I'd long forgotten, like my hobby of being pushed around in a recycling bin, and hands slamming the top down to 'teach me a lesson'. I remembered how I'd slide down the bannisters and climb up doorframes, talk to animals and obsessively make paper birds.

I realised how this energy had been squashed deep inside me, internalised by a society that said I should be quiet and popular and good, whilst constantly telling me I wasn't enough.

For many years, I have been obsessed with trying to remember what 'happened to me', convinced I that I must have experienced some terrible trauma I'd forgotten due to my intense anxieties around things like white vans and loud noises.

As I wrote, I realised that I'd heard on the radio about a kidnapper of a girl my age who used a white van and took it literally, believing that I was next. I realised that I did experience some terrible trauma as a result of being forced into environments that made my skin feel like it was on fire everyday, like school. I experienced trauma from people who stopped talking to me for reasons that I couldn't and still don't understand. From people who made me do things I didn't want to do, completely ignoring any of my boundaries or attempts to say no.

So I simply lost the ability to say no, saying yes instead as a way to feel like it was all my choice. I could see how this mindset had almost killed me, leaving me burned out after university and unable to see any future. It was overwhelming to see how things had changed in the last few years - how I'd gone from hopeless to helping others. From desperately applying for any job that would have me (and being rejected from them all) to training some of the biggest companies in the world.

All from being able to create my own version of reality by being self-employed, where there was no expectations to be anything other than myself.

6) Grief & Sadness

Then I had the final feedback call for my assessment. I thought this was so wonderful, something every single assessor should do instead of leaving people hanging. However, it was also very sad to acknowledge my current reality.

Hearing somebody else tell me how vulnerable I was made it feel real. Hearing how I really needed to focus on self-advocacy made me realise how much of my efforts and energy are put into helping others.

I learned about 'monotropic splits', the experience of intense pain when being distracted from my intense singular focus. This is because the focus is like a spotlight, cutting my sense off, so when I'm pulled back into reality, everything hits at once. More memories clicked into place, of becoming furious with someone who'd distracted me, of struggling in an office with so many distractions.

I was told how my ADHD serves as a distraction in itself. How when I am 'in the zone', my ADHD brain is searching for distractions. It hit me again of how I have a brain determined to live at opposite extremes.

Finally, I heard how this was just the start of my journey. How burnout can commonly hit after a diagnosis of autism. How the sensory experiences may be even more heightened. I thought back to this morning, dragging myself to the shop, where it felt so noisy that it was painful to even be outside.

I was told that I should definitely have lots of support around me, and directed to some resources to share with my friends and family. I felt extremely sad at this, because I couldn't even picture how I would send it to them, let alone believe that they'd actually care or read it.

We spoke about how it can be more helpful to tell people in advance so they have time to process, and I realised how my ADHD brain had just slipped it casually into conversations with people, like a casual update of what I'd been upto on the weekend. Then, how the autism part had reacted so badly when they didn't meet my subconscious expectations, how they hadn't read the memo, done the course, or made the effort - but I hadn't necessarily asked them to.

Afterwards, I sat on the sofa alone, feeling numb. This was to be expected, given that I have Alexithymia, emotional blindness. I couldn't immerse myself back into writing, no words coming out. I felt like I 'should' do something - call someone, tell someone, anything. I remembered seeing photos of autism diagnosis celebration cakes online and decided to order myself a solitary slice of choc-a-lot cake from Nando's to commemorate this moment with myself.

The Nando's arrived 45 minutes later as I sat on the sofa zoned out, the doorbell jarring my senses like someone had clapped a cymbal in front of my ears. I wondered if this was going to be how I'd experience my senses from now on. When I opened the package, I found there was no cake. They'd forgotten it. The irony was not lost on me, despite being autistic.

7) Acceptance

Eventually, I picked the laptop back up, and wrote this. I am pretty certain that I haven't skipped the endless stages of processing this diagnosis, and scared about what the future holds, but hopeful, too.

Right now, I am processing it all, but I am accepting a new lens of who I am. I am accepting that the autism and ADHD can be exhausting and overwhelming, but pretty magical and powerful too. I am accepting that my life is going to always be difficult, but at least now I know why.

The waves of intensity have hit me so hard that for the first time since I can remember, I have asked for help. I just asked someone to cover a meeting for me, a simple request, but it seemed like the biggest thing in the world to realise my own exhaustion and actually act upon it, instead of pushing myself through like always.

I am accepting that people are who they are, and that we are all doing the best with what we have available to us. I am accepting that this is an invitation to figure out the complexities of this brain of mine and figure out how it works.

Most of all, I am accepting just how strong I am, in surviving this all by myself for so long, not having had the words to describe what I wanted or needed throughout my life. I hope that understanding this will help me to accept that it's okay to ask for, and to accept help - however that looks.

Join our new ADHD Works 'Processing Neurodivergence' group therapeutic sessions led by Polly Miskiewicz for us to navigate this together (upon request from me ??). It involves 4 x weekly sessions, starting on Monday 18 November at 6pm: https://lnkd.in/eJu26P4J

Join the ADHD Coaching course in November here.