Autism acceptance week

This week has been autism acceptance week.

Note I say acceptance and not awareness. It may be the autistic brain way of looking at things but most of us prefer this wording.

At the top of my road there's a sign on a garden gate saying "caution disabled child playing here. Autism awareness". This is why we don't like this wording! It makes it sound like we are something to be wary of. Everytime I see that sign I wonder if that child is accepted by their parents or not. 

By 2024 we all know autistic people are around. We all know some people are different. It's not a case of 'being aware we exist'. It's a case of accepting us.

Autism acceptance to me means truly allowing me and other autistic people to be are authentic selves. 

Awareness is I know you might have a meltdown because the lights are too bright and it's too noisy, but not doing anything to help this. Acceptance is offering to turn the lights and music down.

Awareness is I know you don't like eye contact, but I'm still going to call you rude for not doing it. Acceptance is allowing me to stim and look out the window while talking to you and knowing that is just me and is the way I am much more comfortable to have a conversation.

Awareness is knowing autistic people might need more time but still getting frustrated at waiting. Acceptance is being patient and calm while we take the time we need.

Awareness is knowing we might have special interests or regress but still laughing at the grown adult cuddling a soft toy in public. Acceptance is not even batting a eyelid at this, because what does it bother you.

Awareness is listening when I say I can have situational mutism but shouting at me when it happens and demanding I talk and must be doing it on purpose. Acceptance is offering other ways to communicate and understanding I need to be silent because I am overwhelmed.

Awareness is yes I know you're autistic but I'm not going to change anything to make this horrible world slightly more bearable for you. Acceptance is just that. Accepting us and wanting to make a difference for us. 

Awareness is thinking because you know I am autistic that means you should treat me like I am stupid or a child. Acceptance is knowing I am an autistic adult with complex needs but also many strengths. 

It's not enough to be aware. Accept us. We are human too just with a different way of thinking.

Time to start my healing journey (tw death, grief)

Sometimes my mum speaks through, me call me crazy (I know I am) but its a comfort to me.

20 years ago I left you when you needed me so much. And I'm sorry. A little 12 year old girl struggling to fit in in the world and understand who she is really needs her mum. I'm so proud of you Becky you have grown up into a beautiful woman despite the difficulties you've faced. I'm still here with you everyday because I am a part of you. In your heart. As long as your heart keeps beating. I live on in you.

I know you hurt. You hurt far too much for anyone to hurt. I want to tell you that 20 years is long enough to grieve. I know you miss me, I know you love me, I know you'll never replace me. You need to stop punishing yourself for carrying on with life without me. I give you permission to be happy and enjoy life. 

I know that's not easy for you so I'm sending you an angel to help you along the way. 20 years after I took my last breath, they will take their first. A little puppy, a soul mate and a baby all in one. They know how much you are hurting and they know their mission to make you genuinely smile again. 

Crying and feeling shame for being excited and happy right now as its the week of mums anniversary and usually I don't let myself be happy for the whole of February. (Complex grief, never really grieved for 20 years sucks!).

Last year I started a hyperfixation / special interest on getting my own dog, doing so much research and settled on the perfect breed a small ish one that would fit in a flat. I started working out all the things I need to do to make my flat dog safe. I do have my own garden but it isn't secure so that's a big job needing doing.

The breed I settled on was a Cavapoo. When I was in crisis house in January I found a breeder in Barnsley not too far away that is very reputable and does so much more than any other I've seen. I asked when she may next have a litter and she said Peggy is due 24/2/2024. Mum's 20th anniversary is 22/2/2024. The above, words from my mum just washed over me and I instantly knew this was meant to be. I also found out my trauma therapy (many many traumas unfortunately but I am hoping to look at the complex grief). Is hopefully going to start in April, these pupppies will be able to come home end of April. Another it's meant to be! Puppy therapy after therapy!

I filled in the application form and was accepted and told I was first on the list for these puppies. It helped me get through that crisis, someone thinks I am good enough to look after a little puppy. I am not a useless waste of space after all. 

Its new to me the feeling of moving on and being happy. It won't be easy after 20 years. But I truly believe this is my turning point and start of my healing journey. 

An angel sent from my mum in dog form to show me she agrees. The shame on being happy this time of year creeps in and I remind myself mummy wants me to be happy. Too excited about the puppies being born but also absolutely devastated and can't stop crying because I miss my mum and 20 years just feel too much to bear.

Its a complex mess in my head and people don't understand why I answer the question "how are you?" With "I don't know".

Unmasked and where do I belong?

Sometimes my brain just thinks in kind of poetry. Not the best, not perfect counted out lines. But lines, rhymes and rhythm. It's strange it's always been there. I've started trying to capture them when they happen to record my thoughts and quirky brains ways of thinking. 

Two pieces that are linked in a way that I have done recently. Unmasked me is struggling to find where I belong in this world. 

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For 30 years I wore a mask,
So firmly pressed against me skin,
Even I didn't know it wasn't the real me,
That it was hiding within.
For 30 years I hid in shame,
For 30 years I studied others and worked to be the same,
For 30 years if it slipped slightly,
I would pick it up and make sure it was on more tightly.

It is no wonder then with life's battles and traumas,
My mental health suffered and I drifted further.
Into a darkness that I couldn't control,
Into a pit of horrors deep in my soul.

"I think you're autistic, you don't have to wear that mask,
Be the real you its okay" it's such a hard task!
When you don't know you're wearing it how can you take it off?
Scared to discover what lies underneath.
Be brave, be you that's all you can do,
Don't be afraid to let the authentic you shine through.

Slowly but surely I grew and I grew, Into the autistic person I always was,
Just me not pretending to be you.
The relief and the comfort of not fighting my quirks,
My mental health so much better it really works.

Others still wear their mask, Others still want to hide,
But I can't put that back on, it doesn't fit now besides.
One day you will feel safe to be the real you too,
One day you will discover its okay to be your truth.

I am the true me, quirks and all,
I am happier and healthier since I let that mask fall.

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Where do I belong? Where is my place to call home?

Too "mental" to fit in with the autistic community,

Too autistic to fit in with my peers with BPD.

Too high functioning to fit in with some, not functioning enough for others.

Unable to work because of the way this debilitates me, but I "don't look sick" I look able.

Too articulate and chatty to be taken seriously, when I'm overwhelmed and completely nonverbal.

Not this or that,

Not anything really,

Neither here nor there,

Just nowhere.

Do I have a place in this world that I do belong?

I haven't found it yet, where is my home?

The end of the world: how a change/unknown feels for an autistic

My world is slowly crashing down around me.

My hopes of recovery are falling away from me.

My needs to use unhealthy coping mechanisms are getting stronger, day by day, hour by hour, minute by minute.

My heart physically hurts.

The tears won't fall to get out the feeling.

Just numbness and dread fills my insides.

I can't voice verbally how this feels so I write in the hopes it will make some sense.

I have no control over my life.

I am a puppet controlled by some external being.

I am an alien pretending to be human.

My favourite hoodie somehow feels itchy.

My mouth feels gross even though I just brushed my teeth.

My world is wrong and I no longer belong.

To you it's a small inconvenience.

To me it is the end of the world.

Who am I?

 I feel like I've lost myself. No I feel like I never really knew who I was.

I try to be with others expect me to be. But that isn't the real me.

So who am I? Who is the real me? 

After 30 years of masking my quirky personality and real me how do I find her?

How do I know what is real me? I have no idea. 

Society's ideas for is to fit in to be accepted is so toxic. I've masked so much I don't know where the real me even is.

Someone likes me and I crave company and to be accepted so much that I latch on like a little puppy dog, just happy to be included and wanted. I have ended up in situations I didn't want to be in, doing things I would never do because of this at different parts in my life. None of them are me, they are the me the person who I'm attached to wants me to be.

I'm numb. I'm burnout. I'm a shadow. Not a real person.

How do I find her? The real me?

Celebrities are people too

This is deliberately written in an ambiguous way. No one is named who I am referring to. Because I know people won't change. I know these words will be relevant again and again in coming years. Being autistic means you don't always follow the crowd just because the crowd says so, if we don't understand why the crowd does A we do B and don't worry about being the odd one out. We also focus on small details rather than the big picture. Which means I look at things different to neurotypical people. You may read this and think "but still they did this and need to pay for it" the big picture. My points and feelings around it are small details I have noticed that have significance.

So I say it below and I will say it again I do not agree with what this person did. I do not think we should forgive and forget. I know it was wrong. I just want to share the thoughts from the way my autistic brain sees what's happening now. 

Imagine the worst thing you've ever done. 

Imagine you're biggest mistake. 

We all make them we are all human.

Imagine that thing you've never told anyone or possibly told a couple of people ever. 

Now imagine when you tell those people suddenly the whole world knows. 

The whole world has an opinion on what you've done. 

People you thought were true friends publicly display their hate for you because they don't want to associate with you anymore and would rather save their own skin.

The mistake you made years ago has meant you've lost your job and will never work again in the industry you love.

I've just read an interview that brought me close to tears.

Autistic people unfortunately have far far too much empathy it hurts. 

In no way do I agree with what he has done.

But he has seriously hurt enough.

The "blackness and sadness and regret and remorse and guilt", you feel when you make a mistake is nothing compared to this. Your biggest mistake isn't all over the news every day with everyone on the planet having an opinion.

When a celebrity publicly asks "do you want me to die?". It's time for us to call it, enough is enough.

Have we learnt nothing from past mistakes? 

No one deserves this.

Suicide is real. 

Those unrelenting feelings of being a horrible person that everyone hates and would prefer to be dead are real. 

Enough now. Leave this human alone.

Or the same people that pour out hate today will be tomorrow saying how much they loved him and didn't want him to commit suicide. 

He needs to hear that today.

When he is telling the world that is where he is at.

He is at the end of what he can survive.

Everyone that commented and spoke words against this person will have contributed to his death if the worst should happen. 

Again I will ask, have we learnt nothing.

We are all only human.

Today, I am done

I'm drained.

I'm tired.

I'm exhausted.  

I'm sick of this. 

I'm done with being let down yet again.

I'm done with people making changes.

I'm done with others having control over my life.

I'm done with the physical pain I feel.

I'm done trying when I always fail.

I'm done fighting in a world that doesn't care.

I'm done speaking words that are ignored.

Tomorrow I will rise again, but for today I am done.