Saturday 12 November 2022

Autism and trauma

This week I have been thinking a lot about trauma, more specifically I suppose looking at trauma through the lens of an autistic mother to autistic teens.

I don’t personally think that being autistic in itself is traumatic but living in a world that is confusing and sees your autistic behaviours as a problem to be fixed … can be traumatic.

Masking your true self to fit in every day … can be traumatic.

Muting your needs to appease others … can be traumatic.

Being labelled as naughty or awkward … can be traumatic.

Not having your sensory needs met every day … can be traumatic.

Ignoring our to need self-regulate for fear of people's ignorance and judgement … can be traumatic.

People who don’t understand you and change the rules and goalposts not realising the knock in effect that may have… can be traumatic.

Feeling like your different from everyone else … can be traumatic.

Appeasing others constantly… can be traumatic. Having a different way of communicating from everyone else and not being understood … can be traumatic.

Trying to fit in … can be traumatic.

Not processing information in the same way as everyone else and struggling to follow the teacher's instructions in class … can be traumatic.

Getting up every day and leaving your safe space at home to go to school where you are bombarded by overwhelming sights, smells, busy corridors and constant interactions. Not to mention peers that may target us because we’re different and that makes us vulnerable … can be traumatic.

Not being able to communicate how you feel… can be traumatic 

Not being accepted or embraced for who we are … can be traumatic.

Being ashamed or feeling stigmatised by our diagnosis … can be traumatic.

Not knowing why we feel like we’re not the same as everyone else… can be traumatic.

Being vulnerable … can be traumatic.

Going to school for some autistic young people can become so traumatic that even the mention of putting on their school uniform can trigger the trauma response of panic and fear.

So as autistic individuals struggling with trauma, we have taken steps to protect ourselves from all the dangers to our nervous system or we will overload and shut down completely.

We take control where we can, and we cocoon ourselves in things that keep us safe.

We stay in our comfy pjs and can't leave our bedroom’s. We can’t cope with anything else other than total safety and comfort.

We cause conflict or become aggressive to hide our vulnerabilities and anxiety.

We shut ourselves down and isolate ourselves from the world.

If we have to get in the car, we won’t put our shoes on because then we know we won’t be able to get out of the car at the other end of the journey with no shoes on.

We can’t distinguish loud noise from quite noises because volume in our ears feels like l been turned up to max.

The lights are brighter, smells are smellier, and clothes are scratchier.

Our stomachs feel like they are upside down on a rollercoaster so we can’t eat and lose our appetite.

The inner dialogue that lives in our brains won’t stop reminding us of all the things we have done wrong that day, all the ways in which other people think we are a failure, and all the dangers we have to face tomorrow so we can’t sleep.

And there is no way we can talk to people about how we feel because we don’t feel safe enough to trust them with seeing the real us and having to face that rejection or judgement, and besides all that how do we even being to explain all this to someone, where do we begin?

How do I find the words to explain something that we’re not even sure of myself as the rational part of my brain has packed up and gone on holiday at the time when I need it the most. So, I can’t make decisions or process my thoughts right now and I am impulsive or avoidant because my amygdala has squatters' rights in my headspace and is controlling my reactions.

Sometimes such is the extent of the trauma that we can’t speak at all, and silence descends on us like a thief in the darkness. You see the trauma of our environment and negative experiences can trap us in a state of fear and self-protection. But it’s not all bad, there is always light in the darkness.

Things can always get better. We can always recover.

But it takes time and patience for recovery.

It takes understanding and empathy from others for recovery.

It takes accommodations and acceptance for recovery.

It takes genuine authentic care for recovery.

It takes being seen and heard for who we are for recovery.

It takes embracing us for who really we are for recovery.

It takes seeing us, hearing us and respecting us for recovery.

Our autism isn’t the cause of our trauma, our environments and experiences are the cause. We do not need to change; we do not need to be fixed or pretend to be something we’re not.

The world around us and the people around us need to change. They need to take the time to learn about autism and to live a day in our shoes, to see things from our perspective in order to drive the understanding and acceptance that autistic individuals are so desperately crying out for. 

With some out of the box thinking, a change of perspective and sprinkle of care and patience we can try to make the world less traumatic in the first place.


Saturday 18 June 2022

The time is right

Hi folks 

I have been somewhat distant on here for a while. In time as I process things in my own way, I am sure that I will be able to share more of that’s happened.

This post has been drafted for so long I never felt ready to press share, until now. Writing is how I have learned to process my thoughts over the years, it is how I process my feelings and express myself. But this, this one thing I couldn’t write about for what has felt like an eternity.

Last year I received a formal diagnosis myself.  I found out at the age of 42 that I am autistic. And today, Autistic Pride Day 2022, I finally feel proud to say it out loud. 

I have supported two of my children through the diagnostic process learn to love themselves. We all face different challenges and have different strengths, yet we all share one common thread. How can that be? How can we all be so different yet share the same label? That question along with many others is for another time, another day.

For many years I didn’t see autism in myself, I think looking back now that’s because I had a very narrow view of what autism looked like. And I hid my struggles. I masked and pushed my differences deep down into my belly where they could cause no trouble to anyone (except to me). I was diagnosed with mental health issues and told at times that I had a lot to cope with, so my breakdowns and poor mental health were understandable and just a fact of life. 

Those closest to me in the world already know, and to them it has made no difference. Their love and acceptance have helped me process the news and helped me to feel ready to share this out loud today. But some who read this today may be very surprised. And that’s OK, if I didn't know for all these years, then how could they? All that shows is just how much there is still to do in terms of raising awareness around what it actually means to be autistic, especially for women like me.

And right now, I am not ready to have to explain the ins and outs of my diagnosis to those who may react in that way. And nor should I have to. It isn't my responsibility to persuade anyone of the basis of my diagnosis or have to answer any doubts and disbelief people may have. The adult diagnostic process is a long and detailed clinical assessment that people have to wait years for and often it only comes after years and years of misdiagnosis and trauma. 

The assessment is carried out by clinical psychologists and highly trained professionals who know their stuff. The reason for seeking a diagnosis (especially at my age) is complex and very personal to the individual. It can be hard for people to understand why after all these years I felt the need to be formally diagnosed. But for people like me we have often spent our whole lives feeling broken, different and out of step with the rest of the world and that can be a horrible place to find yourself, believe me. 

So please, no judgements are welcome here, I don’t seek sympathy nor any well-meaning comments about how well I have hidden it, or how you can’t believe it as have always seemed so ‘normal’.

Please believe me, as well intentioned your comments may actually be they will serve me little use and would only go to show a lack of understanding and empathy for others like me.

You see for every person who read this and think “she can’t be autistic,” there will be many more that have hidden away their true selves from the world in the same way that I have for all these years. And they may take some comfort from seeing someone like them say the words out loud to light the way forward for them. I know I have when I have seen other late diagnosed women braving the world with their diagnosis. 

My challenges and difficulties have been so hidden and private all my life that the thought of talking about them openly (especially with people who know me well) feels rather daunting. It’s not that I am ashamed of being autistic… far from it, it is just a process that I have to go though, I guess. But I do not need to share with the world the things I have struggled with so privately all my life to prove to them the reason I sought diagnosis. One day, when I feel ready, I am sure I will write about aspects of my life as a means of advocacy and raising awareness. But I am not yet ready for that. 

You see the whole assessment process left me feeling raw and exposed, as I opened up about things, I have buried deep within me. And the process of peeling back of those layers is hard. It tears open old wounds that never healed.

As proud as I am, discovering your true self is hard. Taking the lifelong mask off is hard. 

I have watched famous women talk about their diagnosis with a feeling of envy over the last few months and I couldn’t understand how they talked about it with such ease … so openly, I wished I could share just a fraction of their bravery. I feel like I have carried around this secret since last year and I had no way of sharing it. My words were muted by anxiety and my emotions numbed the fear of letting go of any control I had.

Processing an autism diagnosis is a very long, complex process and I am only just coming to terms with this. I am learning to face my inner struggles in my own way privately, never mind having to justify my diagnosis to others who don’t understand anything about late diagnosed autistic women, I simply haven’t been ready for that. 

A few months ago, my mum told to me that I am different now somehow, lighter, somethings changed for the better she said. “I think it’s since you got your diagnosis.” It was like a lightbulb moment for me as I have felt this change inside of me but didn’t think others could see it. But it radiates from within me, and I have no control. The relief I felt of it all finally making sense. The hidden me learning to slowly peep out from behind the shadows, and to be brave enough to screw what anyone else may think of it all. To say out loud when something is worrying me. To rest when I feel burnout. To turn out the lights when I feel overwhelmed. To lose myself in hours of study. To say no sometimes. Small acts of self-advocacy and bravery each day are enabling me to be my true self, instead of pretending that I am OK when in fact my insides are writhing in the pain of pretence.

I recently went for a job interview (for a job I really wanted) and I had to decide whether or not to tell them about my autism. But I was brave and bold as I see my autism in fact as a strength in many ways that actually would help me in the role. I was scared they would see it as a flaw. But I got the job. They accepted me and wanted me just the way I was. The autistic me. No mask, no pretence, no hiding. And it made me realise that I can be my true self and not be scared anymore. For me, the road to happiness is going to be found by following the route of authenticity. 

Saying this out loud is the first step. I have had to accept my diagnosis in order to process it as I have always fiercely encouraged my teens to embrace their differences. So, I now have to learn to practice what I preach and for me this is how I move down the path of self-acceptance. 

I need to learn to forgive who I have been and see my previous failures and challenges through a different lens. I wasn't weak, or flaky, snobbish or straight faced. I was autistic. 

I need to accept who I am now and speak up for myself more. Make the accommodations I need, and learn to set some boundaries to protect my own mental health.

And I will embrace and love who I am to become … a proud autistic middle aged menopausal woman!