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.

 

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!

Learning to let her go

Why hello there folks! Long-time no see. It’s been well over 18 months since I last did an update. How the heck are you all, surviving, I hope? Well, we just have to don't we!  

I’m not even sure if I still even have people out there interested anymore in anything I have to say, but I have been thinking for a while now that I was feeling the urge to get back to blogging once again. 

It’s been a bonkers time for all of us, and for me writing had always been a bit of an outlet for my inner crazy. But as my son grew older, I became acutely away that our stories were so intertwined that I didn’t want to inadvertently over share what was essentially his private moments too for all the world to see, without his permission as he got older. So, I kept my crazy within. 

Plus, I was pretty ill for quite a while and had lots of ops last year. So, it all just got pushed to the back of my mind and life took over. I couldn’t even remember how to access my blog page I had neglected it so much. 

But my son (so is now not so little...he’s 16!) asked me last week why I wasn’t writing anymore as he flicked through my book that he had found on the shelf, and when I explained my reasons, he kinda looked at me puzzled and said, “well that’s daft, I don’t mind mum you should write if It helped people.” 

Next thing I knew he tidied up my neglected blog page and announced that it was ready again. Just like that. 

So that was it, and here I am at half 4 in the am... this seems to be the time my body likes to wake me up and implant nonsense in my head so I can’t get back to sleep!

And I thought well why not? Maybe no one will read it anymore anyway. But the process of getting my thoughts down on paper really helped me in the past so, why not? Here I am. 

However, after that long intro tonight, while I lay here to the hum of my husband's breathing (well snoring) it's not my son playing on my mind in these ungodly hours of the day... it’s my daughter. 

You see off to uni in less than 48 hours, she’s the first one of my babies to leave home, and I’m menopausal! Oh, and there’s that small matter of us being in the middle of a global pandemic.

Enough said! 

I had no preconceived ideas of how I was gonna feel as the time approached when I had to send my baby off into the world and learn to let her go. Everyone says it a sign that you have done your job as a parent well. Raised a happy, healthy child who is now ready to go off into the world to find her own life. 

And I get all that, I feel such immense pride. She is going to love every second of it, and if she doesn’t, I will always be here for her. I tell myself this fact on a loop every day to calm my nerves. Because I can’t stop these internal pangs that I have no control of from bubbling to the surface. 

The IKEA shop has been done, later today we tackle her food and toiletries shop and tonight she wants a hot bath and a takeaway. All the practicalities are in place. I am counting down the hours ‘til I have to drop her off and walk away with a sense of overwhelming love and excitement and sheer bloody dread as I know I will blubber like a loon. 

I will miss her so very much. I can already feel the ache of not having her around. These last few years I have had to adjust to the sleepless late nights worrying where she was, cope as her friends rightly became the centre of her world, and her needing me less and less. It takes some practice, and I didn’t always get it right. But I can’t believe how quickly the time has gone. 

We drop our kids off on the first day of school with no notion of how fast this day will come around. Those first day feelings of anxiety and pride never truly go away, in fact they amplify even louder at times like these. My children are not mine to keep and protect by my side forever. The time has come. 

I have to learn to let her go. 

I will cry, I have cried. But I know I will adjust. She is so ready to live her own life now and for that I am so grateful. Grateful that she is able to leave me, as hard as that may be for me. Because the truth is my son may never be able to do that. 

But today I can’t let my mind go to that place. Each and every one of my children have so much to offer the world in their own different ways and I am trying to learn to embrace the challenges that come as my children become adults with their own lives and futures ahead of them, whatever that maybe I will be here on the sidelines cheering them on. 

And for my daughter that means leaving home and heading off to uni to a world full of adventures. 

If you’re kids are little, hug them, because believe me this day has come around so quickly that I am struggling to catch up. I wish I could pause time, but I can’t. This has to happen, and I have to wave her off to live her own life. 

Pride, love, anxiety, hope, joy, excitement, worry and sadness. These words don’t even begin to cover the range of emotions I feel right now. But we can’t stop time, tomorrow will always come no matter what. Sitting here worrying isn’t gonna help me keep her little. She will always need me I know that. I need my own mum and I’m in my 40s. 

So now I need to try and sleep. We have a busy few days ahead. Maybe now I have that off my chest I can. We will see.

It is nice to be back folks, even if it’s 4 in the morning! I’ll be back soon I promise (once the blubbering has stopped) 

Mrs M xxx 

My Endo and me

My Endo and me....

“End-o-mi-tri-o-sis?" What's that then!? People say.

It is my secret companion. "My Endo." Not my friend, not welcome, but here non-the less. 

Invisible, silent and hidden from view. No one saw it coming, not even me

My Endo piles on the pain when I’m most vulnerable, when I’m tired or run down. When I have a million things to do.

My Endo changes the rules of the game at its whim.... Taking a disliking to certain foods because it can and flaring up for days on end for no explicable reason. 

My Endo likes to take away my enjoyment of life. Reducing this (almost) 40 year old woman to a fetal ball curled up on the sofa, with a hot water bottle strapped to her tummy unable to move.

My Endo has silently spread, unwelcome and uninvited through my body like a parasite. 

Covering my ovaries, womb, uterus and bowels in adhesions and cysts. Coating my insides like glue. Leaving me exhausted and too tired to sleep some nights.

My Endo likes to attack when I least expect it, always keeping me on my toes and ready for the next battle. It’s halting my ability to dance the night away at my best friend's wedding, and it didn’t want me to join in the family fun on Christmas Day. Instead forcing me to admit defeat and surrender into my pyjamas whilst everyone else had fun around me. 

You see My Endo demands my attention and doesn’t care what I have planned.

My Endo taunts me to rebel. Bending my willpower and determination not to give in to its demands. But some day I have to wave the white flag of defeat, when I just can’t take the pain anymore. And so my life goes on hold until My Endo says so. 

My Endo makes intimacy with my husband hard, due to the pain it likes to inflict on me at times. And it can become a cruel master of my body. Taking away my control and freedoms.

My Endo is unknown by most and has earned the nickname "mums tummy pain” by my kids. It’s easier that way, as most people have never even heard of Endo.

So it becomes my burden to carry. But my families sadness is clear to see as they watch me in pain, frustrated that they can’t help or make this unwelcome guest leave our house. 

And now unfortunately My Endo has become hospital appointments, blood tests and surgery. Stitches, drips and hobbling to the toilet holding my stomach bandages in place.  

So I'm sorry My Endo, but you can't be my secret companion anymore, because people need to know about what a debilitating disease you are.

And sadly I can’t show you the door and get rid of my unwelcome guest. But I can keep you at bay, by facing the surgery and having the treatments to keep you better under control.

I can’t be embarrassed of you anymore! 

So this year, when my body is recovered enough from surgery for me to start fighting back again, I will use my new found passion for running to let people know about you, my Endo. 

We will pound the streets in our trainers to stamp out the misery you cause. We will fundraise for better awareness of Endometriosis.

And I will use my love of writing to tell my story if I can.... as I am sure it’s the same story that many 1000's of women and girls who have suffered in silence for too long now share in common with me. And I will not be silenced by my secret anymore.

We are told  as women not to talk about our monthly cycles. To hide our sanitary products and pop painkillers to numb the pain. It’s private and hidden, behind closed doors. But too many women suffer in silence thinking they have to put up with the pain and excessive bleeding because it’s just part of being a woman. 

Well it’s not. 

It’s taken years of repeated visits to the GP, misdiagnosis and endless tests to get to where I am now. And that’s wrong. 

So, My Endo, I did not want you to invade my body. And quite frankly I wish you would do one! But you’re now part of me now whether I like it or not. 

But you need to know that I am in control of me from now on. There may be days that you win, but I will always bounce back. I will not let you swallow me up. I will take it a day at a time. And I will enjoy the days that you are absent.

So up yours Endo! 
Mrs M X 

Sorry folks I am out of lemonade

Hi folks

I just thought I would pop on to give you all a quick update of where we're at.

I was intending my next post to be entitled 'life gives you lemons you make lemonade', but right now I'm feeling more like a squeezed out, dried up bitter old lime than a refreshing glass of lemonade... so that one will have to wait for another time I'm afraid!


The house is silent, and the rain is drumming against the window. Its blumin' freezing and dark and I'm waiting for the coffee hit to kick in...it hasn't yet happened so I'm off to make myself another cup...

Back now.

So, its currently 3.30 in the morning and sleep evades me yet again. I am beginning to look like the walking dead, no amount of concealer is gonna hide these bags under my eyes. (So please excuse any typos you may spot as you read this!)

I am still battling on to get my son the education he is entitled to. My quest has now broadened to legal advice, complaint letters and all things negative. I really don't like having to go down this route, but I feel like we have been backed into a corner with no choice really.  Dealing with this crap just slowly wears you down doesn't it, and it's hard to stay positive when all you seem to face is brick walls in your way.

I'm not sleeping, and my mind and body now feels like a bloody washing machine stuck on a never-ending spin cycle, which won't be helping me feel any better about it all because I'm just so bloody tired. It really is exhausting. Every day is filled with emails flying this way and that, phone calls and therapy. And then when all that settles down and I try and sleep my mind kicks in with all the things I have yet to do, the frustration at the whole situation and the worry of how things will develop.

And all the while still dealing with daily life. A Teenager going through GCSE'S and the incredible stress she is under. The cooking and cleaning and ever-growing pile of laundry. A dyslexic daughter who is struggling at school and feels like she won't ever achieve anything. Bills to pay and trying to launch a new business venture all at the same time.

Trying to keep focused on what I am eating because I don't want to undo all the hard work, I put in last year losing all that weight when really all I want to do is eat my weight in chocolate and crisps and hide from the world under a blanket watching Netflix.

We are also really lucky to have been referred to the disability social care team (I managed to get the referral done myself ... at my own request) but even that adds another layer of worry to my saturated brain even though I bloody wanted it in the first place and know we need it!! Irrational stupid things like... I have to make sure the house is clean and hovered when the social worker comes, what will they think of my parenting, and there are far more people out there that need more help than we do so I don't want to waste their time.

Crazy isn't it the way we over think and over worry everything.

So right now, folks I'm really sorry that it isn't refreshing uplifting lemonade that I'm pouring out to you all today. And the last thing you probably need is to hear me whining. So, I will shut up now. I have moaned now far too much for anyone's liking.

Maybe after a decent night sleep (ha ha wishful thinking) I may be able to squeeze out a few drops of the good stuff for you next time.

Because there is a lot of good stuff.

I have some amazing people that are fighting my son's corner with me and amazing family and friends that are keeping me propped up. And my son's mental health has improved drastically these last 7 months he has been off school. So, I have to focus on that and take each day, heck each hour as it comes! Because there is a lot to be thankful for. I will keep fighting.

So, I will be back soon to let you know how things are progressing, please keep your fingers and toes crossed for us all.

Take care folks
With much love
Mrs M xx