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Posts from the ‘Asperger’s’ Category

Persevering With Autism Advocacy

Sometimes I feel like giving up.

On autism I mean.

Sometimes I feel like going back in time and not getting an assessment and not having this thing (which isn’t actually a thing at all but people think it’s a thing) that others think they can use against me.

In fact I feel I have given up a bit.

I wanted to be an autism advocate. And I’m not succeeding.

I wanted to say “You’ve got us all wrong.”
I wanted to say “Look if I can get an expert to say I have Aspergers – and look at me with my empathy and motherliness and clean washing and good hygiene and life-loving spirit and GSOH and no outward physical signs- then maybe it’s a lot more complicated and misunderstood than you thought!”
But I noticed that suddenly everyone was talking to me about autism in an ugly way. As if it couldn’t hurt me. They hadn’t changed their views about autism, no, weirdly they changed their views about me. I am still surprised daily at this. How did I somehow change?
I noticed people began to assume I was the unreasonable one in an argument when before they wouldn’t have been so quick to judge. People changed what they thought I could understand or was capable of. What the actual fuck?!

I felt no longer equal. I felt I became an alien.

I also felt that people who might perhaps themselves be autistic were afraid, and instead of thinking “Well if Rachel’s okay and not ashamed then maybe I should look into my own neurology because it’s clearly nothing to be afraid of” they were actually happier putting me into a box with a label and remembering what they’d read about this bad thing (that’s not actually a thing or bad) and not who I actually was. Or who they were. Worryingly I don’t think people realise they are being so derogatory or that it matters.

I’m still, quite frankly, gobsmacked at the things kind, loving people say about autistic people. I’m still stunned into silence on a daily basis at the categorising and the language used by otherwise caring, sweet people who have drawn a line they know they shouldn’t cross concerning what they shouldn’t say or assume for fear of offence and yet somehow autism slipped over and they can say offensive things about autism. I am offended daily. Properly hurt.

I feel I’ve been repeating myself for over four years and not getting heard.

I know one person, ONE PERSON, who admits they fit into most of the stereotypes about autism (Hello if you’re reading this!) The rest of those I know don’t think they do, and I don’t think they do either. And even then no one fits ALL the stereotypes. It isn’t possible. None of us are the same. I thought I’d made that clear but it’s not getting through. We didn’t come off a conveyor belt. But even those who do come closer to the old, offensive text book descriptions deserve better language, better respect and space for them to tell you how it is – not the other way round.

“Autistic people do …”
“Autistic people can’t do …”

Stop it.

Autism is part of a person’s personality, part of a whole. If you take away autism you leave a shell, a zombie. When you insult autism, you insult a human being. Being autistic isn’t about being plugged into a list of disorders from a nasty book that are external to a better self. You can’t unplug us and cure us. It’s about a plethora of nuances that make the person you love the person you love.

You non-auties – I don’t want to remove your insane love of gravy or your passion for sport or your habit of slinging your coat over the banister when you walk in the door or that little whistling thing you do when you’re nervous. And the things that society does that make things difficult for you? I want society to adapt, not you. And when you’re not coping with a situation I want to take you out of that situation not insist you try harder. I don’t want to unplug your nuances that are unique to you.

There’s nothing we ALL do. Nothing. Not one thing. There’s nothing we all can’t do either. Nothing. Not one thing. (Well apart from all the things that are in fact impossible.)

I feel like going back in time, sitting in a room with my psychologist and this time laughing and joking and asking her about her family and not helping her at all.
I feel like making direct eye contact and smiling and keeping my hands still (I can do this for hours if I need to) and choosing different stories from my childhood this time. I can do what all the undiagnosed autistics do. Reject. Pretend. Deny. Retain the privilege to offend.

I feel like waiting for my assessor to deliver her opinion that I may have a few traits but it’s probably just anxiety and that I am in fact not autistic.
Because I could do that. I could.
(Apart from the going back in time thing.)

But I won’t deny. I will continue with my solidarity. I will continue to hope respect will improve considerably. I will continue to hope everyone will catch up. I will continue to be more patient, understanding and forgiving than people will ever realise because they’re too busy looking through the wrong lens to notice how often I am forgiving them.

Sorry.

I don’t know where to start. I really don’t know where to start.

I don’t know where things begin so where do I pick up from?

So I’ll start with reasons:

Anxiety, childhood and adult traumas, being misunderstood and misjudged, being bullied, mystery stomach pains, mystery exhaustion, anxiety exhaustion, insomnia exhaustion, social exhaustion, overstimulation exhaustion, hormonal problems, problems with executive functioning (in my case this means never knowing what order to do things in or how long they will take), untapped and unexplored creative yearnings, a feeling of wanting badly to fit but knowing I never will, a need to find solitude and space beyond the realms of what others consider “normal”, an intense hypersensitivity to everything going on around me, extreme empathy which means I literally suffer with people as well as feeling sympathy for them, low self-esteem, fear. In more recent years pain from hyper-mobility causing me to use my muscles badly. Uncommon reactions to foods, medicines and other stimuli. Massive emotions that cause me to feel hurt, heartbroken, moved, ecstatic, frightened, offended and traumatised and also highly amused and deeply in love and overpowered by music more easily than most. (I have to stop myself bursting into tears about the big feels of life literally every day. Often just because a sound is beautiful or something happens just at the right time). Absolute terror at any prospect of conflict. Fear of phone calls, fear of unexpected events or visitors, fear of losing people. Massive, massive, massive fear of losing friendships – so massive I don’t fall into friendships easily. Inconsolable sadness and frustration if misunderstood. Crushing pain in my chest and around my rib cage and back as if my heart is hurting lasting days if someone upsets me or misunderstands me. Socialising replay and fallout where I am kept awake by reruns of everyone I’ve talked to that day and then knackered while I try to recover.

That’s just a few things off the top of my head!

So why these reasons?

Because I’m fed up. And I’m sure some people are fed up too.

I just want to get on with my life. I don’t want to keep shrinking my world because people think I’m someone I’m not or I’ve said or implied something I haven’t just because I’m an individual and don’t always have the social energy to explain myself. I’m fed up with feeling people expect me to do life differently from the way I’m doing it and not just loving me for who I am. I am so tired of being afraid. So tired.

I don’t want help, guidance, counselling, drugs, advice, tips, or pressure to conform. I just want to get on with my big feels life and not be judged.

So, my point:

I’m sorry.

I’m sorry if you don’t “get” me. I’m sorry if you misunderstand me, I’m sorry if you think I’ve offended you or not measured up to your ideas of how I should fit into your world. I am genuinely, truly sorry if you don’t think much of me. I’m sorry you can’t see beyond what you think I am based on the way I held myself the last time you saw me or what you think I thought based on my silence the last time you tried to interact with me, or the way my words entered your brain in a different way from the way they left my brain and you didn’t stop to think that it’s not me you should be blaming. I’m sorry if you read my self-preservation as hostility or rudeness.

I’m sorry that because I’m not like you you think I must be faulty or bad or bad-hearted or in need of some kind of fixing.

I’m sorry. I am sorry.

I don’t want a world that is shrunk to tiny because I can’t muster the energy to act for your sakes every day. And yet that’s where I find myself.

I don’t want to keep thinking “Who the heck am I?” because I’m this to you, that to her, the other to him and neglectful to myself. Acting every day in different ways is pretty shattering.

I’m clever. I have a degree. I’ve studied a vast array of subjects. I’m great at research. I fix what needs fixing, I patch what needs patching, I find help for things I think are a fault and learn to love what I know is not a fault but simply my individuality. I had to be very brave and consider others’ feelings from a very young age and I’ve lived this way ever since. I’m always looking at how others are feeling and wondering what I can do and feeling part of you as if we are all joined in some way. I will literally be happier if you are happy and beside myself with worry if you are not.

I don’t expect you to research me. I don’t expect you to completely understand. What I did expect was for people to just realise and accept they simply don’t fully understand me and that was fine – they just shouldn’t judge.

An “Oh! You’re not like me?! Hell, that’s just fine” kind of acceptance would be great.

But people don’t always just accept. They don’t even know they’re not accepting. They look for ways to adjust me regularly because there’s comfort in familiarity and sometimes I don’t always do all your familiar stuff like you’d like me to. Deep down you find it hard to think it’s okay. You know you do.

I’d love it if you could try though.

Do you know how hard I’ve been trying all my life?

This isn’t a call for pity or sympathy. Nor is it navel-gazing, self-indulgence. It’s more of an outward-looking study of human behaviour around those who are not fully understood, and it’s an apology that I can’t not give a flying fig and move on or ignore or just be happy to hate the way some can because I love people and I can’t cope with bad feeling.

I give lots of figs.

So why am I sorry?

I’m sorry that’s it’s not my fault and that there’s nothing I can do about it. I’m sorry that I’m surprisingly happy with the way I am and you’re not so much. No really – I know you think I’m breaking some kind of unwritten rules that don’t actually exist. I know. I feel it. I feel it very well. I am tuned into little adjustments in your approval that you’re probably not even registering yourself. But subconsciously you’re point-scoring me a heck of a lot of minuses. I’m sorry that I have to shrink away from so many of you so often because being misunderstood is so physically difficult as well as so emotionally devastating. I’m sorry that my way of demonstrating caring is different sometimes from your way of demonstrating caring and that you can’t always see that both ways are acceptable. I’m doing big cares in ways you haven’t even thought of and you don’t know you’re breaking masses of my social rules and I’m not even mentioning it or holding it against you.

I’m sorry because there is so much more potential for all of us to be more joined by empathy and yet… and yet…

Well. I’m just sorry I am. Because I feel we’re all missing out.

Identifying and coping with being not autistic (or having Nonautism Disorder)

(Rachel is a normal, healthy autistic who has been working with Nonautistic sufferers all her life)

Non-autism Disability is a triad of impairments involving three or more of the following disorders:

1. Muted sensory awareness: Where the sufferer has a defective or lessened sense of smell, touch, hearing or visual awareness. Their palate might also be muted meaning they eat too much. Being defective in sound and vision abilities means they are often unaware of everything going on around them and miss out a lot on life. Sometimes they barely notice a touch or a flickering light as if they are not fully switched on to life.

2. Low Awareness Disorder: People inflicted with Nonautism Disability are often not taking in their surroundings enough and block out or ignore lots of detail. Although frustrating to live with people like this (friends, partners and families often report how they find their nonautistic family members hard work), people with nonautism can be very useful to us in the workplace as they achieve tasks with a devil-may-care attitude to their surroundings. It can be distressing, though, to watch them missing out on life.

3. Sleep Easy Disorder. Laboratory studies on sufferers of Nonautism Disorder show a common condition afflicting many subjects. They often find it too easy to “get over” stuff and unfortunately can fall asleep before examining what has gone wrong. This can be problematic for loved ones who might be distressed by their lack of interest in others’ feelings when their nonautistic companions don’t seem bothered about getting to the bottom of things.

4. “That’ll do” Disorder. People with Nonautism Disorder can plough through tasks like a machine. Their coldness and ability to detach themselves from deep emotions or distractions with ease means they ignore butterflies when gardening, never stop to dream when cleaning and always do things in a robot like order that may seem almost nonhuman to normal autistic people. You might often find a person with Nonautism Disorder has done exactly what they set out to do and finished on time which can be quite unsettling and unrealistic.

5. People with Nonautism Disorder have a Be Like Us Disability which makes them very samey. They often greet each other with the expression “Hi. How are you? I’m good.” – rarely deviating into lengthy sentences about the intricacies of life, and seem bewildered by those who do. They can often be found in groups staring blankly at anyone who is not like them.

6. Oversocialising Disorder. Nonautism Disability means the brain is defective at keeping the mouth from chatting. Idle chit-chat and gossip and pointless accounts about TV programmes or celebrities come pouring out. Family members often report their distress at the way their loved ones can’t control this Disability and have set up support groups to talk about them behind their backs. It’s possible that the Forced to Fit movement may be helpful in this area.

7. Deep Caring Deficit. Experts believe nonautistics simply don’t have the capacity to care enough. But they can be taught to mask this and can learn sets of pretences to help them fit. When forced to repeat “Wow!”, “Did you hear that!”, “Isn’t that beautiful”, in small rooms for days on end, some patients can become really quite convincing and often be mistaken for having normal healthy, easily distracted, autistic minds.

Recent studies are beginning to show evidence that this pretence might be exhausting though and never become natural to them but the jury is still out on that so the Forced to Fit movement still continues. Nonautistic Awareness Day has been set up to raise money for the founder members’ stable block and holidays.

There are text books and TV characters that accurately depict all non-autistic people. If you want to know more about how all non-autistic people behave then look no further than Lorraine Kelly. Non autism is mostly a female trait with more than 99 percent of non autistics being just like Lorraine Kelly. Some nonautistics are more disabled but just like her most are likely to spend a lot of time sitting on sofas chatting, making small talk and asking people questions about their lives.

Nonautistics are often funny without realising it and it’s good to laugh at fictional nonautistic characters in films and point out how we are better than them.

The debate continues on whether we should call people with Nonautism “A Person with Nonautism” or “A Nonautism Person”. Many family members say their loved ones – although difficult to live with – are still a person first and foremost despite their disability, and so they prefer to say they are a Person with nonautism and hope that one day a cure can be found and their nonautism removed. Normal Autistic people have first choice in this of course and must decide what to call people with Nonautism because we are the ones who write the studies and text books and tolerate the Nonautism affliction in others.

If you feel you or a loved one is suffering from Nonautism Disorder contact your General Practioner who may or may not know enough to help you, may or may not agree with you and may or may not put you on a long waiting list to be clinically assessed with the guarantee of an uncertain outcome and uncertain support. Don’t worry though. We’ve watched Lorraine Kelly and we all know exactly what you are all like.

What is Autism?: Extremes of Normal Humanness. (Do The Maths)

Today I’m wearing tumble-dried knickers. Tumble drying knicker elastic changes the feel of it significantly enough for me to spend the whole day being aware of it touching my skin. As underwear ages it becomes more and more uncomfortable and I have to throw it away. You can’t spend your life being distracted by knickers! 

I am an adult autistic. We can manage these nuances and not speak of them. You won’t know what other “feels” I’m dealing with generally. But if I wasn’t able to control what I have to do to make my life more bearable you may very know all about it! Autistic people put up with a lot before they cry out in discomfort. 

Autism has been in the news again recently. This time because a celebrity couple discovered their twins are autistic. With clickbait headlines about grief and despair rolling through social media, I avoided reading or watching any of it. I saw other people’s comments and decided I didn’t have the emotional energy to deal with just how crap it would make me feel and how much fight it would take to recover. And, to be honest, you never completely recover from derogatory language. The ways the outside world talks about autism hurt and offend me and other autistics deeply and yet no one asks us, they ask the non-autistic “experts” who don’t know – those who rarely, if ever, speak for us. Judgement and inference from observation and text books are not the same as direct experience. 
We often feel as if you think we are locked in a room with a one way mirror and it’s okay to observe and speak about us like this because we are somehow other or elsewhere. We are not. We are here, among you, part of you, your words insult us. 

It is assumed autism is based on a system of things gone wrong. It isn’t. 

The negativity, the focus on disorder, on words like “illness” (wrong!), “disease” (wrong!) and on the parents (oh, please…) is all too familiar and I can’t cope with anymore of that right now. 

When people think of “severe autism” they are often thinking of those who have a severe mental or intellectual disability alongside autism; those whose learning age never reaches above that of a young child, those who may always struggle to communicate or be understood. Severe mental/intellectual disability is not autism. It is sometimes a comorbid condition but it also exists outside of autism. It’s important to see that these are conditions that can be separated. 

 I would be devastated beyond words if anyone in my family grieves about me being autistic. My diagnosis saved my life and my sanity. I love how it removes all the other labels that didn’t fit and describes me instead as someone who’s been coping with too much for too long. In fact there are many people I wish had been around a bit longer to receive the news and hadn’t disappeared from my life thinking I was [insert alternative negative labels here]… 

FACTS: 

Children inherit autism from their parents. To be autistic means that one or both of your parents is autistic themselves or carries enough autistic traits of their own to pass them on to you through their genes. This could be the irritating stuff such as aversions to bright lights and noises; the (potentially!) manageable (though often misunderstood) stuff such as social exhaustion; the disorders such as anxiety; and the good stuff such as attention to detail and ability to hyper focus and get things done. In fact, many parents of autistic children aren’t aware that they themselves are also autistic because they only see the extremes of their child’s struggles and can’t see the other stuff. It’s a big old complicated spectrum and worth getting to know about properly from autistic people for the sake of autistic people. And not just one or two. 

We are all extremely different. 

Understanding and accepting which traits an autistic person has most strongly, and accepting and adapting for them is how to live with autism. 

It’s the same for anyone. All humans. Each individual part of me that my assessor used to make up a picture of autism is something other non-autistic humans can relate to. I know other people who relate to my anxiety or my social exhaustion or my distress at sensory overload or my habit for getting lost in a task or managing time badly or struggling with poor executive function. Other non-autistics have traits that are on the spectrum which I don’t have. I’m not obsessive about a special interest and yet I know non-autistic people who are, I am not funny about sitting in the same seat in a familiar place and yet I know non-autistic people who are, I’m not frightened of change and yet I know non-autistics who are. I don’t have a problem with sarcasm and yet I know non autistic people who struggle to recognise it. 

There is no stereotypical autistic or stereotypical non autistic.    

And, importantly: 

It’s not autism in itself that’s painful.  

It’s an extreme of any of the less manageable traits that’s painful, it’s lack of understanding and facilitation that’s painful. It’s often lack of preparation or willingness to change and absorb new ways of thinking by people who are imposing upon autistic people that is most painful. 

Switching your thoughts to “Oh heck – I can see now how that really bothers you, exhausts you, repulses you, I must try to avoid over-exposing you to those triggers” is like medicine to an autistic person. It’s something I instinctively do for my loved ones even though they don’t have autistic diagnoses. 

Don’t try to make people fit and then grieve when they don’t. 

Autism is about maths. It’s about adding up the different ways life affects a person, adding up the intensity of each of those traits, and if the figure is a high one then they are autistic. One autistic person’s life could be entirely different from another’s because the traits that add up to make them autistic and the intensity can be completely different. It’s the same with all humans. It’s not about a disease or a malfunction – and for thousands like me it’s not about a disorder (I have anxiety disorder and sensory processing disorder within my spectrum of autistic traits but being autistic itself is not a disorder). 

It’s about some extremes of normal humanness. 

I prefer to think of autism as a collection of nuances – including some disorders – that can be individually present in all humans. Sensory processing disorder – when any or all of the senses can respond to stimuli in an extreme or intense way and cause distress or feelings of being overwhelmed can be present in autism but it is not exclusively an autistic disorder. Non autistics can suffer with it. Social anxiety disorder can be a problem for autistics and non autistics alike. Social anxiety can also not be a problem for some autistics who display little anxiety when socialising.  

This doesn’t make autism on a line with autistic one end and non autistic the other. You can’t be in the middle and be a bit autistic. It’s more like a 3D Venn Diagram where all our behaviours, traits, nuances and struggles are in bubbles and if enough of them overlap then we are autistic. 

We are the ones with the highest numbers of overlaps, we are the ones with the biggest number of struggles coping with social norms, we are the ones most bothered by rules that don’t apply to us, we are the ones coping with the extra feels. We are the ones who are quietly and not so quietly often very uncomfortable. 

And we are not locked in or locked out, we are in the same room. 

Deal with it. 

Don’t grieve it. 

I Am Autism

I am all your fears multiplied 

I am all your senses intensified 

I am all your blinding lights in agonising magnification 

I am all your irritations quadrupled 
I am all your needs made life or death 
I am all your demons emboldened 

I am all your plans unstuck
I am all your sleep disturbed
I am all your time stolen 

I am a constant storm 
I am too much wind, too much rain
I am too cold, too hot, too buffeted  

I am “look at this”, “look at that”, eye for detail, nose for detail, “food’s gone bad” 

I am your calm denied
I am honesty at all costs
I am fairness at all times 

I am all your conversations distracted 
I am your tiredest morning every morning
I am at once too much and not enough 

I lock you in when you are out and release you when you are in 
I am too full of noise and too quiet 
I am not so much different as more 

I am the warrior within; the inner strength you cannot see
I am a desperate thirst for knowledge, for proof, for fact

I am all you are always 
I am never apart from you

I am the wild stallion you tried to make cart horse  

Let me run and you will see 

I am Autism 

Flat on the Mat

I’m tired from things I had to do – that you didn’t make me – you were just being you.

I’m all used up from pushing so hard – to get there, to be there, to go the nine yards.

Again and again the pull of the norm; the done thing, tradition, weathering each storm.

No one knowing how unnatural it felt to never have nothing but what’s in my head.

So quiet now is needed more than before to make up for years of locking its door.

Taking what’s needed like a famine starved hound and taking extra while hitting the ground.

How long can I lie here? Can it please be forever?

I don’t want to be like That again ever –

That busy and shaky and buzzy and tired, and hopelessly desperate because I’m not wired

Like you and like them and the ones who set rules. Who mingle in parties and offices and schools.

Applaud me for trying, for getting a first on how to behave though it made me feel worse.

But please understand it took more than too much and I’m not even me now it sapped me such

That here I am begging: “I can’t carry on but I can’t even tell you because it feels so wrong – To crave that much quiet and empty and slow.
And will you understand?
I really don’t know.”

One Thing Only

I went for physiotherapy this morning. The outcome was good (well, better than expected). The physiotherapist is lovely, and I know her well enough to not be too daunted by the mysteries of what to expect. My husband drove me and picked me up and the journey was only 10 minutes. Yet I am exhausted. It took over the whole of today and I’m still replaying and relaying the experience. I worried about it overnight, worried about what I would say, what I would wear, about someone else seeing and touching my body. I am exhausted from socialising and from talking about myself – I find it really hard to take up people’s time and for the time to just be about me. I struggled to get back to normal and complete the rest of the day, to cope with work and parenting and this evening’s mealtime. I just wanted to go to bed at midday and say ‘I’ve dealt with something today!’ And yet to anyone else this is just an appointment amongst many in their diary – get over it. But every other conversation and decision for the whole of the rest of today has been an immense strain and had me close to shutting down. I even said to my husband ‘I’m not sure I can talk to anyone else today.’ 

This is me. One thing dominates and continues to dominate until it is over and I have recovered.  Good or bad. I do my best to keep going but the need to recharge is not a choice. It is a need. It’s how it is. 

Life in The Wind Tunnel

I don’t mean to be self-indulgent but I feel this needs to be said. It’s something I keep not saying completely but it’s so huge. 

As 7th April is my 3-year autismaversary and represents the culmination of 3 years of deep thought, realisation and listening to others who deserve a darned site more understanding, I need to say something apparently simple and maybe obvious but incredibly important: 
When you’re autistic, you don’t have a choice about what bothers you.

Life blares at you and glares at you. Some things torment unbearably and create uncontrollable inner turmoil but you are told to “suck it up”, to “just don’t let it bother you”, that “it’ll soon pass” and other unhelpful crap. Or told to look at things from others’ perspectives when that’s all you’ve been doing all your whole bloody life long. More sympathetic people give you well-meaning hints about mindfulness, about coping, about letting go or about what works for them. Mostly about not being you. 

But. A lot of autistic people instictively know how they will feel safer and less tormented. They will have a safe activity, a safe sound, a safe place that they will escape to or attempt to escape to. We effect habits to release ourselves often without knowing we are doing it. 

My safe space is my mindfulness, is my coping, is my letting go. I’m clever enough to have worked this out, worked on it and solved many of my life’s coping problems, and gradually created a personalised fix for overload and anxious thoughts. It is what works perfectly for me and my inbuilt feeling of needing to escape, and it brings the greatest peace, joy and healing. It’s my pills, my alcohol, my sweet tea, my hug, my long hot bath, my counselling session, my night out with the girls, my retail therapy and my big long scream at the world all rolled into one. I know how to fix myself, I know how to keep going, I know how to find calm and peace and I am so so happy that I have found self-acceptance and a way to be me, safely and naturally. 

And breathe… 

But if my safe space and time in it is interrupted, I am distraught as if I am being denied oxygen. I literally breathe in short shallow breaths. My heart beats too fast in an attempt to cope. I am massively affected. 

I don’t choose to be massively affected by having my safe space invaded, I don’t choose to be completely beside myself and panicky. I don’t have a choice. I need a safe space and I need peace. When it’s compromised I can’t cope. It’s like cutting off my oxygen. Really. This one’s not something to meditate through. 

I’m not like everybody else. I am highly highly tuned to everything around me. I need somewhere where I can tune out from humans and society and tune into nature and wildlife. Autistics need their thing – whatever that is – that they can tune into like an empty engine being hooked up to fuel, like a dry desert lying in heavy rains. Like a starving baby being reunited with its mother. Each one of us is different and needs a different thing, but we need something that lets us out of the constraints of a non-autistic society. 

It’s as important as air and water, and without this I suffer from Safe Space Famine and become agitated. 

Something is giving me palpitations right now, it’s making me feel unsafe, invaded and rather rattled. There’s nothing I can do about it and no one I can complain to. I’m lost and alone and pacing and wondering if this will be the time I fall. 

It’s the story of my life. 

Coming down from a bad couple of hours one day this week, when everything began to feel more lucid again – in fact, perhaps the height of lucidity as everything fell back into place and the latest storm cleared – I explained being me to my husband:
‘It’s like having vertigo and having to spend your whole life always living on the edge of a cliff. Always terrified. I know where I will be safer and suffer less. I want to be safer and suffer less but I’m not allowed to move away from the edge and be calm.’ 

And while I see this as an abnormality in my brain if you like, I want to accept it and live with it. I’m not going to change so I need my environment to change. I need to be allowed to move away from the edge instead of fighting vertigo or learning new climbing techniques on top of everything else I battle and absorb and internalise. It’s as if I accept me but life around me doesn’t. 

I said it might be difficult to understand if it’s not something you feel yourself but he said it explained very well what he saw me going through on a regular basis. I think he is beginning to see that getting away from the edge is the best and the fairest thing. 

Of course he can’t completely understand. The kind of chronic anxiety, sensory onslaught and inability to filter things out that I suffer from is not easy for most people to really process. And the needs I have are not easy for most people to understand: 

No sudden noises, no surprises, no practical jokes, no telephones ringing, no unexpected visitors, no unexpected noises or voices when I’m alone. No repetitive or constant noises that overwhelm or compete with other sounds. 

No throwing me into situations I haven’t prepared for. 

No invading my safe space. 

Space invaders not welcome. 
Autistic people need to be allowed to choose their safe thing, their survival technique, their way to live just as everyone else chooses not to live in a wind tunnel being pelted with rocks with heavy artillery noise firing around them all the time. 

“Hey just get a stronger hair tie and wear a suit of armour and some ear defenders! Suck it up! Learn to live with it!”  

No. Get the hell out of the wind tunnel.  

Am I making any sense? 

As if I Shouldn’t be this Way 

My head is fine – I checked: it’s good.
I tapped – knock, knock: knock, knock on wood.
I wondered what you thought was ailing:
Too honest? too thoughtful? too dreamy? too feeling?

I made a list. What is the worst?
How am I wrong? What should come first?
Too Not Like Everybody Else, but how?
In subtle ways that hardly show.

Fitting this world while I’m told I’m not.
A puzzle piece, apparently, not finding a slot.
You’re puzzled by me and you think it’s a shame.
But it’s just your brain not getting my brain.

Language chosen to hurt and label.
To create a discourse: ‘You are not able’.
Words not chosen with thought or care
Problems invented that are not there.

‘Don’t be like you, be like me,’ you say
As if I shouldn’t be this way.
But this way is me. Work harder to like it.
Instead of teaching me to fight it.

Take your “Disorder”, your “Disability”,
Stick it up your arse. Don’t apply it to me.
Years of burn-out now ensue.
From thinking I should be like you.

I own my mind, my thoughts, my brain.
No two humans should be the same.
When space and light and peace are mine,
I really couldn’t be feeling more fine.

A blend of individuality that makes up me.
I only see fault with society.
Don’t bother that you can’t make me fit
That there is my problem. That really is it.

Surviving this negativity is quite a feat.
So
Knock knock.
See? – I’m whole and complete.

Autism awareness month (April) is upon us again. For hundreds of thousands of autistics – particularly we adults who are able to “own” our own autism and do not have to suffer at the hands of well-meaning (and not so well-meaning) non-autistic “experts”, the Autism Speaks awareness campaign is a harmful and insulting campaign with unpalatable ideas of a cure, and focusses on insulting and distressing notions of faults and fixes rather than the education and acceptance that society needs.

Please don’t be “autism aware”. Please don’t “Light it up blue”. If you do, you clearly still have A LOT to learn. Please educate yourself with the words of autistic people themselves. We are all different and we have a lot of experience to pass on.

Twenty (ish) Reasons Why I can’t Possibly be Autistic*

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  1. I’m not a boy
  2. I’m not a child
  3. I can and do empathise
  4. I’m not a genius in any field
  5. I don’t have a savant talent
  6. I like people
  7. I don’t rock, flap, jump or visibly stim
  8. I don’t have obvious meltdowns
  9. I shower and wash my hair every day
  10. I don’t have an obsession with space like the boy I knew at primary school
  11. I like fashion and think about what I wear
  12. I have brought up 3 children
  13. I don’t hit people
  14. I could talk and communicate at a very young age
  15. I’m not fussy about food and I love strong flavours
  16. I understand sarcasm and don’t take everything literally
  17. I am perfectly capable of accepting other people have a different point of view based on their experiences (even though I often wish they wouldn’t!)
  18. I love hugs
  19. I love hugs
  20. I love hugs

Hug me

(Make sure you’ve washed first)

Okay now leave me alone for a while 😜

What are yours?

*and yet I am

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