I have a confession. Sometimes things get on top of me and I feel sorry for myself. I think ‘why me?’ ‘It’s not fair’.
This doesn’t happen often because I AM NOT A VICTIM. I refuse to see myself as that.
In my late teens, experiencing my first romantic relationships, I confided my horrible upbringing, the violence I both witnessed and was subjected to by my parents. But I didn’t want pity. I saw myself as a SURVIVOR. I saw myself as strong. I did well at school. I earned my own money. I had friends I loved and trusted. I wore my past like a medal, proof I made it out ok.
What I didn’t appreciate at the time was how badly my upbringing had affected me. The constant judgement and rejection. The conditional love of a mother who both needed and resented me. Living each day with fear somersaulting in my belly. The weight of responsibility I felt towards my siblings. The strange mix of loathing and pity I felt towards my father.
These things didn’t make me a survivor. They made me angry, so angry. I wore an invisible suit of armour but I didn’t realise it. I scared people, I pushed them away before they could hurt me. I had one female school friend who I knew I could genuinely trust, and school teachers who gave me more security and validation than my parents ever did. But for the most part I was entirely alone, lost in the chaos of my own head.
So yeah, these things didn’t make me a survivor. They made me VULNERABLE.
Since my Autism diagnosis at 42, I have read, watched, listened to and discussed everything I possibly can about Autism. I’ve worked so hard to marry up my lived experienced with current research and best practice because it has allowed me to know myself in a way I never did before.
Imagine at 42, after a lifetime questioning who and why you are, knowing you are different, being told you are inadequate. Imagine suddenly being giving the rule book to your brain, the instruction manual. That’s what it was like for me. It was bloody brilliant!!
Suddenly everything from my past and present made sense, I wasn’t mad, bad, weird, horrible, difficult, selfish….I was just a different type of human being, who experienced the world through a different lens. And that was ok. Sweet relief it was ok. I had permission to make choices and lifestyle changes that protected my mental and physical health. I started to accept myself. Even like myself.
Of course there were those (ignorant, arrogant, blinkered souls) who viewed my Autism as an excuse, an inconvenience, something I needed to change about myself.
But the people that mattered, that bothered to really know me and love me; they made the effort to understand my world and the world of my sons. We grew stronger and closer.
Yet still, I was vulnerable. I have been plagued with mental health issues my whole life culminating in my Bipolar 2 diagnosis four years ago. That suit of armour I wore turned out to be paper thin, easily torn, dissolved to pulp by rain. I break so easily. Even with almost a year of trauma therapy and psychiatric medication I was scarily vulnerable to the judgement of others. And I needed to know why. I couldn’t just accept that this was my lot. And I especially didn’t want my sons to struggle with their mental health like I have.
So I did what I do best and I researched and researched and researched some more. And I came across some work by Autistica, the UK’s leading Autism research charity. They have been looking at why Autistic people are so much more vulnerable to mental health issues.
Now I already knew that my Autistic neurology predisposed me to poor mental health. In fact 80% Autistic adults experience mental health issues versus 25% of the general population. But I couldn’t accept the idea that my neurology was to blame.
What the research also showed is that Autistic people suffer more negative life events. My reaction? ‘Tell me about it!!!’ Seriously, anyone who looked at my life on paper would probably say ‘wow, she’s been pretty unlucky!!’ But it’s easy to focus on the negatives and I’m not a negative person, so I decided to compare my good life events with the bad…
What’s interesting is that a medical professional would consider me an Autistic with ‘good outcomes’. This is because I tick many of the boxes of neurotypical expectations for success. In a stable relationship? Tick. Employed? Tick. Children? Tick. Home owner? Tick.
But then you look at the negative life events and you start to see why my armour is so thin. Why I break so easily. Abusive childhood. Bullied at school. Divorced. Losing our sweet first son Pablo. Chronic diseases- breast cancer and blood clotting disorder. Estrangement from my birth family.
These things would be tough for any person to experience but especially tough for a sensitive and highly vulnerable Autistic person who grew up in a hostile and unsafe environment.
Armed with this information I started to explore the relationship between my differently wired brain and the negative life events I had experienced. And what I learned was so powerful.
You see the cognitive and sensory differences of the Autistic brain don’t CAUSE poor mental health. But these differences coupled with negative life events form a dangerous cocktail. Together these things DO lead to mental health issues.
Is it our fault that we are more vulnerable to negative life events?
NO IT IS NOT! But we experience these events MORE INTENSELY.
We find it HARDER TO COPE and HARDER TO RECOVER.
We BLAME OURSELVES because so often we are told it’s our fault for not coping better.
How many times have you told another human…?
Pull yourself together!
Move on!
Get over it!
Or maybe you’ve said:
Stop crying!
You’re so sensitive!
You need to change!
I’m not judging by the way. Im sure I’ve made similar unhelpful comments when weary and frustrated. The problem is, to an Autistic person this type of commentary only serves to undermine our self esteem; it tells us that our NATURAL REACTIONS ARE WRONG. That our feelings are wrong. That who we are, is wrong.
What is happening in these situations is INVALIDATION. Invalidation creates trauma. Invalidation is the breeding ground for early mental health issues. Invalidation drives Autistic masking. It makes us say yes when we mean no. It makes us constantly apologise (I am always saying sorry!) It makes us beat ourselves up for not meeting our own impossible standards.
The worrying thing is, invalidation isn’t always deliberate. Whilst it is the tool of the bully and the manipulator, it can also be done without meaning to. Because you are tired or frustrated. You want a quick solution. An end to the drama. You want the Autistic person in your life to cope better, to fit in. You think you can talk them into being more ‘normal’. Yet all you’re doing is showing them that their differences are bad, that they’re not good enough.
I could go on and on but I keep reminding myself this is a blog not a book and in subsequent posts I promise to explore:
⁃ which of our cognitive and sensory differences make us more vulnerable and why
⁃ how to improve our resilience and coping strategies by understanding these cognitive and sensory differences better
⁃ Exploring tools that can help us grow and improve the skills we have in these areas
What I want you to take away from todays writing is this…
Our differently wired brains (cognitive and sensory differences) PLUS negative life events = poor mental health
Negative life events PLUS invalidation (deliberate or not) = poor mental health
But poor mental health is NOT a given. It won’t happen to every Autistic person. It doesn’t NEED to happen to the 80% as the statistics suggest.
Instead of thinking ‘How can I protect my Autistic relatives’ mental health?’ think ‘How can I help them pursue emotional well-being?’ Let that become your mantra.
⁃ Protect them from the invalidation of others.
⁃ Advocate for adjustments that meet their cognitive and sensory needs.
⁃ Support them through negative life events gently and at their own pace.
⁃ Learn what makes them feel good about themselves, and do it! This is usually linked to their special interests.
For me, when I start to feel overloaded, when I start to feel sorry for myself, I get out in the fresh air, amongst nature, and I look for the small things. The details. The proof of magic. Recently my husband and I had a rare afternoon off from parenting and despite the freezing winds, he agreed to take me beach combing.
I photographed seagulls being battered by the waves. I rummaged through seaweed to uncover a piece of coral, a dried up jellyfish, a sea worn piece of driftwood. The pinks and blues on the inside of a crab shell. My husband and I held hands as we walked along. These are the small things that ground me. That bring me back to feeling calm and safe.
In years gone by we’d have sat on the beach with a bottle of vodka and some takeaway noodles, chatting and giggling. These are happy memories. And this would cheer up. But I’d feel terrible the next day, hungover. And we’d be bickering a few days later, the alcohol impacting our mood and our sleep.
The way I cope now is much calmer and kinder on both of us. It suits my needs as an Autistic person. We still chat and giggle but I’m a cheaper and less volatile date!
I am on a lifelong mission to achieve and sustain emotional well-being. This is just the start. See you for my next blog post 🙂
Nothing But The Truth 
Something I think is far too overlooked when it comes to autistic mental health, or for that matter, any disability populations’ mental health, is the effect ableism has on us. The constant discrimination, devaluation, invalidation, exclusion, etc. etc. Some of which you touch on in this blog post. Yes, there are some aspects of being autistic that make us more prone to experience negative things, or have a harder time dealing with things don’t, or can shake off (sensory issues anyone?!) but those things would be so much easier to handle if our families, our teachers, our societies were more accepting of them, and taught us how to self-regulate during or after them, and/or how to compensate for those that can be compensated for! (And so many other things. It’s a big topic. so I’ll stop here.)
But, at least society is finally accepting that we do have emotions, and that we are susceptible to the same mental health issues as anyone else! Not too long ago it was thought we couldn’t be affected by emotional stresses because we were too ‘broken’ to even have emotions! (Because autistics have a tendency to express emotions in ways NTs don’t know how to see, or interpret.) So I suppose progress is something to be glad of, even if so much more needs to be made before the NT world catches up to what those of us with lived experience of autism already know! (Though some of us have had to suppress this knowledge so much, for so long, we’re not aware that we know it.)
LikeLike
Hi Kim. Thanks for reading my blog 🥰 I absolutely agree with you. So much of my trauma is a result of others judging me, misunderstanding me, holding me accountable for things I don’t agree with or don’t want to do because they are bad for me. It’s incredibly lonely feeling judged and even though I tell myself they are wrong and they don’t understand me, I am left full of self loathing and self doubt.
I thought my diagnosis would help my birth family understand me and help them be more empathic. In fact their attitude was to treat it like a joke and ask me how I was going to change to fit in with them better.
NT oppression is very real but the more we speak up the more likely we are to be heard.
LikeLiked by 1 person
You have my sympathy and compassion for what you’ve gone through and are going through. It’s hard when we live among people who think we don’t deserve to exist as who we are, and that we need to become someone else. It takes a lot of support from others like us and from professionals who ‘get it’ to even begin to change those feelings of unworthiness. It can be done, but it sure ain’t easy!! Getting involved in autism self-advocacy, and the disability rights movement in general was an absolute game-changer for me! It sounds like it has been for you as well.
I’m sorry your birth family has decided to be awful. Some people just refuse to act like decent human beings. I hope you can limit your exposure to them. You don’t need that kind of negativity.
Every time I get discouraged about NT attitudes towards us, I have to keep reminding myself that at least our voices are now being heard. At least they now admit we even *have* voices! So much has changed in the last 20-30 years!! It’s an agonizingly slow change, and sometimes I find myself upset about that, but it is changing.
LikeLiked by 1 person