13/02/2022
Spectrumy offers lived experience and her journey from child to adulthood.
Empowering ❣️
Content warning: violent intrusive thoughts.
Buckle up, it's a long one!! (You know when I say that, it's long 🤣🤣)
Six years ago next month I was diagnosed with autism.
Aside from marrying my other half and having the children, no single day has changed my life more.
Six years ago when I was diagnosed, things were really tough. I realised I am autistic a year into my second breakdown. I didn't have words for any of what was happening to me, I didn't have medication, I didn't trust the NHS mental health profession. The only diagnosis I had at that time was Emotionally Unstable Personality Disorder (also known as Borderline Personality Disorder). That explained nothing about why I was having obsessive crushing thoughts about the end of the world so intense I wanted to kill both myself and my son. And why I had experienced various obsessive thoughts and worries about that and all kinds of other things from illnesses to childbirth to my sexuality to whether my romantic relationships were right, and why I experienced compulsions to stick a knife in my eye and throw myself into oncoming traffic.
Six years ago, my eldest (who was 2 at the time) and I would get up and the day would stretch ahead of me completely terrifyingly full of my thoughts. Getting out and about was the thing that had always helped me with my mental health but little one was struggling too, his mum was seriously ill and he'd just moved from the only place he'd ever known, and we couldn't get out and about easily - if you've ever had a struggling toddler you know what I mean!! So he was not in a good way and neither of us had any support with anything and he lived on the couch watching the TV or his ipad and I would sit with him and cuddle him and try to survive my thoughts.
I was reaching out to my GP and mental health professionals trying to get help but it felt like nobody was listening. I don't display crisis behaviour. I'm calm and I'm rational when I'm talking to professionals, even when I'm having a breakdown. That's my autism. So none of the professionals I was reaching out to 'got' how serious things were.
And then I realised I am autistic and was diagnosed, surprisingly quickly for the NHS.
And the change wasn't immediate.
But a little while after I was diagnosed, I was reading a book about autistic people and I read about OCD.
I thought I knew OCD, it was all checking and rituals. I don't have that.
But here I was reading about my experience and reading that OCD is more common in autistic people.
This gave me the words I needed to describe my experiences, and I went to the GP and described what was happening to me and that I thought it was OCD.
She agreed.
And I was diagnosed shortly afterwards, with OCD, and medicated with an antipsychotic and an antidepressant targeted for OCD.
And it's been gradual, but things have got better and better since then.
I still struggle with the OCD thoughts. When my youngest was one, I started to have very specific thoughts that I'm going to die in a particular horrific way. I have them every day. It's been four years, and it's exhausting. But with the medication, they are kept under control. They no longer dominate.
One of the biggest changes in recent years has been in our eldest. He's gone from a kid who had emotions out of control to... taking life in his stride. Communicating things with us. He's much less volatile, much calmer.
I have worked at repairing our relationship. I know he bears scars from what he's been through, and I felt awful about that for the longest time, but the changes I see in him delight and encourage me.
Six years ago when I was diagnosed, my social life looked like what you would stereotypically expect for an autistic person. I was struggling socially. I had been very hurt by various relationships in my life, as is pretty typical for people with autism diagnoses, and I was very untrusting and lacking in confidence. I didn't believe anyone would want to know me and these beliefs had stopped me even investing in my close family relationships. I struggled to reach out and trust new people.
Over the last few years, I've really tried to work on my confidence. I put myself in new and unfamiliar situations, I take risks, I try to talk to people, I work at things, and slowly but surely my confidence has increased.
Thanks to my page, I've worked at how I handle criticism. It's always been a real trigger for me and led me to blow up (a lot of autistics/ADHDers experience this and I believe this is because we experience more correction, particularly as children). But it's getting less triggering. I'm able to stay calm and listen to people better.
And as my confidence has increased, my social skills have improved, naturally. My medication helps a lot with that too. Without my crushing obsessive thoughts I'm a lot less intense to communicate with / find communicating a lot easier! (Still intense though 🤣)
To be diagnosed with autism you have to be significantly impaired by your traits. I really take issue with this. I'm much less impaired than I was six years ago. If I went for a diagnosis now, I would quite probably not get one, because I wouldn't be considered to fit this criteria.
I am still autistic.
But by what I think is the true definition of autism, not the way we traditionally view autism.
My thinking is autistic. My brain is ALWAYS on the go, and I think about things very intensely. I see connections between things. I prefer writing to speaking. My sensory experiences are different - I have hypersensitive senses of touch, hearing and interoception, I don't like particular textures in foods, and I have a hyposensitive sense of smell. I am a very committed person with great focus for the things my brain wants to focus on (other things... no chance!). When I think about something, I really think about it and I don't stop until I have a new understanding of it. I'm never going to like a big party where I don't know anyone. I prefer quieter spaces, and structured activities. I like deep chats. I have different reactions to medication. I find unexpected difficulties overwhelming because it's a lot for my brain to process.
I don't think I have social or behavioural differences. The traditional understanding of autism is deeply flawed. I am having a more intense life experience.
Of course that CAN make for different social or behavioural experiences. And sometimes I am different socially, BECAUSE I am having this different experience of the world. That's not a bad thing. It can be a good thing.
But my different experience doesn't necessitate social differences.
And this is how we are missing tons of autistic people.
Not just adults, but children too.
Because we are looking for behavioural and social differences.
And it's not about that at all.
And this is why autism rates haven't increased. Only autism diagnoses have - as criteria around diagnoses reach towards the truth of autism.
People having a different life experience have always existed.
I am autistic because my brain works faster and more intensely, it takes in more information and is always processing and interpreting.
We only see autistic people in distress. The diagnostic guidelines are built around autistic people being in distress. We should not tolerate that as the benchmark, the norm, for autistics.
What about when we're not in distress?
What if my parents had been happily married? What if we'd stayed in the house we'd grown up in and I'd stayed with the children I grew up with for secondary school? What if I stayed good friends with my early childhood best friends and didn't experience serious bullying and ostracism?
Would I ever have developed OCD?
Would I ever have had a breakdown?
Would I ever have been diagnosed with autism?
Would I ever have fit the diagnostic criteria?
I would still have been autistic.
Or.
What if the diagnostic criteria changed and I was picked up young?
What if I'd grown up with the self understanding I have now?
What if I'd had the self confidence that's grown over the past 6 years earlier in life?
What could my life have looked like now?
In either of those situations might I never have developed serious problems with my social skills?
I would still have been autistic.
The thing is, it's very hard for a child's brain - for anyone's brain - to develop skills, social or otherwise, while it's in active trauma.
That's why traumatised children experience developmental delay.
I don't want my life to have been any different than it was. Any different and I might not have my other half and the kids and our pooch. And I might not appreciate the things I have as I do.
But it makes me think.
How many autistic people are out there?
What is the true picture of autism?
Experts might say I am misdiagnosed, that it was always the trauma.
I think I'm autistic. My genetics say I'm autistic. I'm also diagnosed with OCD and ADHD, and that alone massively raises my chance of being autistic.
I think we are missing how often autism and trauma go hand in hand and how much of an autistic person's difficulties trauma might often account for.
Being diagnosed with autism is one of the most best things that's ever happened to me.
I'm happier, I'm more confident, I'm more fulfilled, all thanks to my diagnosis. I feel valid as a person. I learnt about the strengths of my brain. I started writing about autism and people resonated. I went back to uni and I started working with autistic children. I worked on myself. I meet people with similar life experiences to me because we share a neurology. Life feels rich, meaningful, and vivid. Because of my diagnosis.
I love being autistic. It's been far from the biggest struggle in my life. It gives me strengths, resourcefulness, I use to tackle and understand my challenges, like my OCD.
I don't like to talk of it as a superpower. I have challenges with being autistic. I think I have OCD because of the particular way my autistic brain and trauma combine. But, I would never change it. It makes me me. I know how to work with my brain. And I like it.
Those are my thoughts about being autistic, six years on.
(Pic description: white woman with hair in ponytail and yellow cardigan smiling at the camera in close up selfie.)
