Hello World! Anyone out there?…

I feel like I should start this page with some great insight, some clever words, something meaningful. The truth is though, that I am working towards gaining those things myself, and this blog is going to be my documenting my thoughts and feelings along the way, muddling through. I do so hope it can be a place for us to muddle through together!

Introductions then! My name is Emma and I’m 35 years old.

I was diagnosed with Autism and ADHD just over a year ago, after a lifetime of looking for answers to why I feel the way I feel, and think the way I think. I have had several answers given over the years, each of which was a clue to, but not the whole picture. The ‘usual suspects’ such as anorexia, depression, stress, social anxiety disorder, Post Traumatic Stress Disorder (PTSD), as well as physical conditions such as Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitus (M.E.), Irritable Bowel Syndrome (IBS) and Fibromyalgia.

For those of you in the know, you will hopefully know what I mean when I say basically I’m a Spoonie! For those of you that don’t know what I mean, please google the Spoon Theory by Christine Miserando. I would love to tell her how her theory made my life so much easier, in the way of explaining how these conditions affect me. If you plan to be a regular here you might hear me refer to spoons a lot!

My daughter was diagnosed with Autism at the age of 3, after us suspecting as much from around the time she was 18 months old. She is now nearly ten, and in the years between, I read about Autism every day. One day, browsing through articles on my facebook feed, I came across one on undiagnosed Autistic women, and it was a revelation to me. This led to my eventual diagnosis.

So across the years I’ve felt a bit of a failure if I’m honest. That’s probably sugar-coating it! I felt like I was working my ass off while everyone breezed certain things, and yet I still couldn’t keep up. Having the diagnosis of Autism and ADHD has freed me a little, and I’m working on understanding why I find certain things so hard and giving myself a bit more kindness – the same as I would hope to show someone else struggling in these ways. I’m sure I’m not alone when I say I’m my own worst enemy, my own harshest critic.

I’m still adjusting to being ‘officially Autistic’. As in, I obviously have been Autistic my entire life, but I didn’t know it yet, and neither did anyone else.  I’m fully immersed in the Autistic community as a parent/carer, but I’m still finding my place there as an Autistic individual. I hope that statement makes sense – it’s hard to articulate that exactly right.

I’ve always loved writing. It is something that just seems to come naturally to me, I love the feel of the words, and at times it feels like magic the way they just stream out. On a perfect day, when the words flow freely and effortlessly, it feels an enormous sense of relief, of unburdening. I’ve strayed away from writing in the years since my daughter was born though, first through sheer exhaustion, then through a deep depression where I felt I had nothing to say, nothing valid to contribute. In more recent times, I have begun to turn to my old friend again, rediscovering myself as a person, outside of ‘Mummy’. But I have done so quietly, and anonymously. These times of social media, and trolling, and the way it seems impossible not to offend someone somehow no matter how carefully your  words are considered, or how well they are intended, have made me terrified to ‘put myself out there’.

But back in October I started a new adventure. I joined University and began studying for a Masters degree in Autism and Related Conditions.

Wow. What a revelation to me it has been. A safe place, to learn and discuss and hopefully make positive change in the world. It has made me remember I do have something to say, a lot to say, and the words bubble out constantly, seemingly unrestrainable.

I have met people who have very kindly told me that hearing my experience has helped them, which was incredibly empowering to me. It made me feel that I could be brave. That if somehow by finally verbalising and advocating for myself, I can help others do the same, even one person, it is worth any negatives that may come my way.

So when asked, I wrote a blog entry for the University, about Autism, and me, and studying with Autism. I was pretty scared of putting it out there, but excited too. I was incredibly happy to receive messages of support, and encouragement, and acceptance.

So that’s how I am here now, rambling on in the hopes that my words will connect with someone out there. That they will resonate with someone that needs to hear them. I’m still scared stiff but growing a little braver every day.

Emma x

 

Midnight Analogies (unapologetic and unfiltered – I’ll regret this in the morning)

Imagine you began life on an treadmill. Like this thing is constant and it’s move, move, move. The pace is continually unforgiving – it takes all your breath just to keep up. Meanwhile there are people walking next to you like ‘hey how’s your day? look what I’m up to!’ – and you want to be like them, you want to achieve those things too. But it’s so hard achieving anything when you are just trying to keep up with the treadmill. There are even times when the treadmill speeds up even higher, or raises the incline, and anything you have managed to hold onto while somehow keeping up just crashes down. You’re panting and gasping and aching and furiously trying to keep going, all the while people next to you strolling along casually like ‘dude, what’s your issue, just shape up’. But they aren’t on this treadmill, they aren’t even on a slower treadmill, hell they are out for a Sunday meander!
When you try and point out to people that you are on the treadmill, they are all like – ‘Heck I don’t see any treadmill, what’s wrong with you? You are obviously crazy / want attention / lazy / a pathological liar / drama queen / useless *insert description of choice
You start to wonder – Heck am I even really on a treadmill here? I mean I see the treadmill, I feel the treadmill – but logically who is more likely to be wrong – me, one person, or the whole entire rest of the world? This treadmill must be a figment of my imagination. I must be insane or broken or damaged. I mean I don’t feel like that’s it, but I must be. Right?! (*world echoes back RIGHT!)
There are times when you’ve run so hard for so long and the incline is rising and the pace is quickening and you’ve dropped everything you managed to make and sustain and you are just so goddamn tired. I mean utterly beat. And you’re insane anyway right? Or lazy? Or useless? So why are you trying so hard? And you thwack down into that treadmill like a brick, you knock all your senses loose and you are just spent. You can’t get back up. Heck you couldn’t even manage the gentle wander all those other folks are up to right now – if that was even an option – let alone get back up and face the treadmill again. So you stay there, unable to function, face to the treadmill, hurting and burning and all the while the folks strolling past tut and nod and say ‘there she goes again, said she was a *see above descriptions*’. Despite all this after lying face down on the b*#*%d treadmill for an indeterminate amount of time you get back up and keep going, you even start catching up with those folks on the side for a while, gathering and sustaining and somehow pushing forward again. But that just confirms their suspicions even more – ‘Pff if she really was on this fantasy of a treadmill she would have fallen down sooner, she would have stayed down, she certainly would never have caught back up!’ And you’re thinking, begging inside, I did all this because you wanted me to, even though you never believed me, or saw the treadmill, or helped me up, and still I cannot win.
That’s how life feels a lot for me. Being Autistic and having ADHD. Without all the friendly cling on the party uninvited guests of co-existing conditions that drink all my alcohol and ruin my night! (Try running on a treadmill with those f*#$rs hanging off your back!).
I’m still on that treadmill, and lots of those people still cast their glances and judge me. I still judge myself. I’m terrified of slipping and falling and faceplanting that thing again. I worry that there’s only so many times I can get back up. I am sick and angry of the social obstacles that keep getting thrown in my (clumsy) path – jeez yeah that’s what I needed, hurdles thanks all (read *tories (#notalltories *maybe)
But I keep going, Because, no matter how hard I find it to believe, I’m not lazy, broken, insane *insert adjective here. I’m different. Diverse. And with understanding and acceptance of that I can make some changes. Make some adjustments. Imagine how much easier life would be with a cup holder on that treadmill. Hell, imagine that treadmill has an ipad dock! Imagine if there is some medication (ADHD/pain/antidepressants/antianxiety) that somehow slows the treadmill, lessens the incline.
I just need to believe my own senses, my own reality. I’m on a damn treadmill if you see it or not. I’m on the damn treadmill somehow keeping up (*mostly) shouting at passers by to see the damn treadmill, to see other people’s treadmills. I’m designing cup holders. I’m still here. One day you’ll all see the treadmill, which means you’ll see my daughter’s treadmill, and I hope that means she doesn’t have to run quite so damn hard.

Disabled people should not be treated as ‘Acceptable Sacrifices’ in the war against Covid-19.

In an awful few weeks for the entire world, in unprecedented times for all of us, those who are disabled, elderly, vulnerable have faced specific challenges.

Whether it is this letter from a Welsh GP surgery https://www.bbc.co.uk/news/uk-wales-52117814,   the use of the clinical frailty scale in granting treatment or even beds for those seriously ill, a move Mencap voiced concern over    https://www.mencap.org.uk/press-release/mencap-responds-deeply-troubling-new-nice-covid-19-guidance, or reports of those with lupus being denied medication in the US – while thanked for ‘their sacrifice’ https://themighty.com/2020/03/lupus-patient-denied-hydroxychloroquine-covid-19/ , or this mental health trust telling staff not to resuscitate due to lack of PPE     https://www.google.co.uk/amp/s/metro.co.uk/2020/03/30/mental-health-trust-tells-staff-not-resuscitate-patients-protective-gear-shortage-12480829/amp/ it feels more unsafe to be disabled than ever.

The disabled community is once again facing the same narrative – that we are side characters in this story, not protagonists, not set to play out the story arc, survive the challenge, but to be cast aside, saddening, maybe even heartrending, but nonetheless acceptable sacrifices in the war against this pandemic.

It is true that the virus that ravages the globe now does not discriminate. Young or old, healthy and fit or with underlying conditions, any of us can succumb, even if some of us are undoubtedly more vulnerable than others.

However, if things continue to escalate we will face the harshest choices, the most difficult decisions in who gets treatment and the ugly truth is it won’t be us.

Even though we may be more vulnerable to the disease, we are the ones least likely to be aided in our recovery, as the value of our lives will not add up, can not add up, to that of the fit and healthy.

This is not intended as a criticism for healthcare professionals who in battlefield conditions will have to face choices they would never ever wish to make, choices that they will bear the weight of in perpuity I am sure, should they not succumb to the virus they are on the frontlines fighting.

This is more an outpouring of sadness, of grief, as once again feeling that I cannot count on the world, for my worth is never enough. My many ailments have always branded me the target of ridicule, shame, guilt and hostility, by others or myself. Now, in the most dire of times, the most critical of situations I do not feel reassured, I feel ever more isolated and unseen.

I do not meet the score. I cannot beat the cut off. I am less worthy of life than others.

This is an unprecedented situation, something we have never experienced first hand before. But yet the message, the undercurrent is depressingly, achingly, familiar. You are not worthy.

Random Ramblings from a birthday girl…

So I started a thread on twitter today – and it took on a life of it’s own. Lots of the thoughts bouncing around my brain saw an opportunity and barged their way out!

It is raw and unedited and circuitous – but I’m going to share it anyway:

Today is all about catching up on emails, messages, writing, small tasks, general admin/scheduling.

It’s been busy lately – lots of intensive content production, so now a plan to catch up, organise, systemise before placing a lot of my focus on my dissertation.

I love my work and feel so privileged to be able to speak to such a wide variety of people about Autism.

I’ve engaged on a wide variety of topics – some of which I always felt drawn to and others that have been a slight curveball but all of which I have immensely enjoyed.

I can’t pretend I’m not hugely looking forward to spending time on my ‘priority passion’ which is Autism and healthcare. My dissertation is focusing on the pregnancy, birth, new motherhood experiences of Autistic women which is so important and so close to my heart.

I’m lucky enough to share that passion with another Autistic woman – Hayley Morgan who happens to be local & on the same MSc Autism – kismet! I am so looking forward to seeing both of our finished dissertations & hoping they drive forward our work on increasing understanding.

It feels there aren’t enough hours in the day lately & certainly never enough spoons 🥄 #spoonie but my hope is every little helps.

It’s frustrating the amount of blog posts/words rattling around my head desperate to get out, that my exhausted body/mind struggle to facilitate.

It’s hard to take time to rest, replenish and refresh, spend time with my family/friends when there is just SO MUCH TO DO – but I know self care is essential & I need to practice what I preach to others.

I guess my recent birthday has me in a particularly reflective mood.

I reached the ripe age of 37 on Thursday, carrying the knowledge that as I passed the median age of death of 36.7 for Autistic people, many others never will.

I could feel the stories, faces & grief of their loved ones as I went about my day. The ones that died so young.

So unnecessarily.

I held in my heart & mind the horror of the battles facing my own daughter, her friends, the children of my friends. The sheer stomach churning worry of the self harm and suicidal thoughts so many of them express, most not even hitting teen years yet.

I feel the overwhelming white hot, terrifying fury at the way they have to face a world that breaks them apart before they even have a chance to grow.

That takes all that makes them special & tells them to hide it, ‘normalise’ it & feel shame at who they are.

When who they are is beautiful, unique, caring, funny, inventive, mesmerising, precious little souls that have so much to give the world BECAUSE of who they are.

Teaching them to hide it instead of nurture it is sacrilege. Not just for them but for all of us.

Decades ago I faced all the same challenges. I went through the same cycle of breakdown, wanting to die, wishing I had never existed.

Decades later the pattern is repeating as though nothing has changed.

I see the awfulness play out in front of me & the helpnessness and horror I feel is insurmountable.

The dread of a nightmare where you are desperate to run but everything is slow motion and your legs won’t work…

The worst part is wondering if they will make it. Statistics say some of them won’t. It doesn’t bear imagining.

That’s why, exhausted, drained, emotional with a mind filled with fog, I keep fighting.

For the lives that can be saved. The minds that can be nurtured. The hearts that can be healed.

For some solace – if there is any to be found – for the families of those that cannot.

#ActuallyAutistic #AutisticsInAcademia #spoonie #ADHD #cfsme #fibro #chronicpain #Mentalhealth

Steel Core

I am disabled.

Every day

In huge ways

And little ways.

And you wouldn’t even think of them if you didn’t ‘know’ ways.

I’m also intelligent

Kind

Empathetic

And loved.

I have spent my life fighting

Inside my head and outside my home

With myself, with the system and everything in between.

I’m tired.

I’m frustrated.

I’m angry.

I’m also fuelled

Adamant

Determined.

Papering over the cracks as I go

A million rips a day

But I’m still here

And my voice is only getting louder.

Even when I feel it’s close to a whimper

There is a steel core that insists

No. Bellow, blast and blister

With your words and your actions

You must.

I am tired

And I want to give up

Sometimes a million times a day it seems

I feel I am breathing on borrowed time

Walking on shaking legs

Like I might collapse and sleep a thousand years

But no

I know I will not

This knowledge is ingrained

A call to arms

Even when I want to lay down my weapon

The pen calls me

I know I cannot

Even when I wish I could, would

Think I should

I will not

I am fire and ice

Storm and sea

And all you throw at me

Fuels me

I am not alone

Not any more

And this is how I can be sure

I will not

Admit defeat.

Give up give in

This is the war I can only win

Tomorrow, a year, ten years from now

It will happen some day, some how

For resilience is the other thing

This world this struggle has armed me with

The quiet voice at the end of the day

That somehow keeps the demons at bay

Even when they screech and claw and scratch the door

I will not humour them anymore

I will continue day after day

Searching for answers

Finding a way

With little steps and twisting roads

You can push back and you can goad

But I am persistent

And survival is in my blood

Thirty six years and I’m still here

I wonder if you would just disappear

If you were me and you lived my life

It makes me smile

The strength is there

I’m not going anywhere.

Autistic Recovery, Shutdown, Burnout and Disk Defragmentation

I often say that Autistic shutdown is a bit like disk defragmentation. Do you remember that maintenance tool computers had? It showed all the information and code that was mixed up, stored securely and safely but not organised properly.

Anyway it was lots and lots of tiny coloured boxes. I used to love watching it run. All the tiny boxes slowly grouping and categorising into familiar categories of blue, red and green. What was a mish mash of primary colour becoming a neat set of colours. It brought me a deep sense of joy and calm to think of all the organisation happening in the system.

Autistic shutdown, or even just that enhanced recovery time we need after socialising or other activities always makes me think of this. It’s like I’ve taken in all this information, a myriad of chaotic colours that needs to be sorted, made sense of.

I’m pretty good at retaining information, but sometimes accessing that information takes an immense amount of work – especially if I’ve been ‘ignoring my maintenance’. All those days I push through and ‘store up’ these essential maintenance tasks (we’ve all done it, remind me in 24 hrs, or 7 days, or at next startup right?!), the more bogged down, sluggish and prone to error my system becomes. I mean, if you have to sort through piles of paperwork to find one piece of information, that’s a lot harder than opening a filing cabinet and navigating to the relevant file!

If I don’t carry out my defragmentation regularly – i.e. spend the time processing, replaying, making sense of and organising all that information I’ve collected – then eventually my system will start to crash. I won’t be able to run essential programs, I might lose data, and eventually even getting my operating system to switch on and respond will become near impossible. That’s Autistic burnout, when you enter a shutdown so long and huge it becomes impossible to function for an extended length of time. It’s a very scary place to be in, because all of the data is in there rattling around, and the world keeps ‘pressing the keys’ trying to get a response, but you can’t successfully process it in or out. It’s like being lost in a sea of multicoloured boxes so vast and overwhelming you feel you may never sort them out.

Self care is necessary and vital for everyone. But things can reach critical levels faster and more catastrophically for Autistic people. Our emotional regulation and executive functioning often looks very different than that of non-autistic/neurotypical people. So our self care becomes an even more essential part of life, often for longer periods. We are often feeling and processing and experiencing so much so differently, in environments designed for the predominant neurotype, not ours.

So bear in mind when an Autistic person needs more ‘downtime’, more self care, can engage in less social or other activities than you might expect, these things aren’t acts of luxury or indulgence or ‘special treatment’. It’s ensuring we have all the time we need to sort our little coloured boxes, so we can run properly, efficiently. So we can have the best possible outcomes for us AND subsequently for the community and society we engage with.

Disclaimer: I like tech, but I’m sure far from being an expert – if this analogy is flawed please forgive me – I’m sure lots of people have a far far better understanding of operating systems and maintenance than I ever will. But hopefully my analogy makes sense, it’s just always felt that way to me.

Musings of Malaise

I wish I had a zero tolerance policy.

A ‘we don’t negotiate with terrorists’ policy.

Negotiation is all I have;

Held hostage in my body,

A prison of bones and flesh and pain,

I plead with every task I complete,

That it will not crash this train;

So much focus on fighting,

On overcoming all barriers,

We must fight and inspire and bulldoze on,

‘Disability warriors’;

But this illness doesn’t take kindly to battling,

To arm wrestling into submission,

It only feeds the flames of it’s fury,

The fuel a welcome addition;

The harder I fight,

The more it wins,

The more the vines constrict,

To escape I must give in,

Though it seems to contradict;

I must accept,

I must submit,

There is no strength, no skill, no wit,

That will allow me to win this war,

That’s not how this works, not by far;

I lie in my bed,

Hollow and weary,

As though the sparks of my existence have been quietened,

I lie in my bed,

Cold and dreary,

As though I have slowed, or the world has quickened;

My mind is foggy,

Yet still it knows,

This is not what it desires,

My body holds me,

As the pain grows,

And all of my fibres tire;

In desperation I promise, I beg,

I’ve learnt my lesson I swear,

I shouldn’t have pushed,

I shouldn’t have fought,

Just please don’t keep me here;

I’ve been here before,

It felt like forever,

Weak and empty and scared,

I’ve been here before,

I know it wasn’t clever,

Yet still I clawed til I bled;

I live in a world where my value it seems,

Lays in my productivity,

Theres no place for the broken, the flawed, the imperfect,

In this capitalist society;

I can take the fatigue,

The pain an old friend,

These trials I’ve grown somewhat used to,

My biggest enemy these days is me,

And the stigma I cant push through;

I’m not immune to the judgements of others,

To the questioning wondering why,

I do a good job with my outward disguise,

I don’t let this world see me cry;

No my pain is reserved, a private showing,

For those who love me the most,

A backhanded compliment, hard to take,

A front row seat while I become a ghost;

A ticket to fear, to share with mine,

Each time I do too much,

A seat to my inability to move,

To think, to eat, to touch;

It’s a lesson I’ve been taught many times,

Yet I never seem to learn,

I cannot fight with this illness of mine,

Play with fire and I burn;

It was easier for a while,

In some small ways I suppose,

I checked out of life, gave up the need,

To engage, to try, just froze;

Now I am alive, and gulping in,

This world, it never seems to be enough,

Theres so much to see, to taste, to learn,

That pacing myself is tough;

I’m angrier now than ever,

At being forced to live in this cage,

I’m outraged, infuriated, a supernova,

A sickened shell so full of rage;

I have so much I need to say,

Theres so much to be done,

But I if I fight too hard, too fast,

This war can never be won;

I must remember my simplest battles,

Are priority number one,

For if I fall at those everyday hurdles,

Then this soldier is done;

It’s difficult though,

So difficult,

To hold back, hold so much inside,

To live with the million sorrows,

Of a million dreams that have died;

My future will always look different,

To the average, I know this is true,

But maybe it can be so much more,

Different not less than you.

Despair, beauty and everything in between.

I feel your pain.

All of you. The posts on social media, the case studies, the tribunal rulings, the stories that filter back to me and the people I meet.

I know your pain.

I face it every day, the desire to tear down the world and rebuild it. To make it fair, and kind, and less difficult.

It is difficult. Existing every day in physical, mental, emotional pain and having that added to constantly by the barriers continually thrown in your path. I spend my life stumbling and struggling, each gasp of air only a momentary relief before the drowning begins again.

Lack of empathy. Hmm. I think maybe the government and the media are suffering from that. Not me. No, I have an excess of empathy, so deep and vast it threatens to engulf me. Mood swinging high and low from determined to make change to the deepest despair. I feel all the pain. So much of it. It feels like my very soul is weary from the sheer weight of it.

I grew up in deprivation, not just economically, but in so many other ways too. I have seen such sorrow and hardship that I carry with me every day. But so much of it was unnecessary, as it continues to be. Increasingly targeting and marginalising those most vulnerable while demonising us in the media.

Just over a year ago I watched a video of a young woman living alone. She was in inappropriate housing that could not meet her needs. She was forced to drag herself along the floor throughout her flat and struggle to haul herself onto her toilet with her arms. To stumble down flights of stairs that she had fallen down several times before. Found passed out by her neighbours. It haunts me. The degradation and despair. I can’t switch it off, no matter how I try. So many people in so much pain – in a modern civilised society? It’s not right.

I read a report yesterday that suggested austerity measures have led to 120,000 excess deaths and this number will climb to 200,000 by 2020. The authors likened it to economic murder.

The LeDeR Report makes harrowing reading, as do the many studies showing a huge disparity in healthcare for those with disabilities, and horrifying mortality gaps for those most vulnerable.

The UK has been found guilty of breaches by the UN.

Hate and hostility is being bred by design in this country. And it’s working.

People like me, we struggle to carry on daily. I have a complex profile of neurodevelopmental, physical, sensory needs.  Most people don’t see the effects of all of this.  I carefully plan and pace and engineer my life so that my most vulnerable state is never visible. My mental health is fragile, has been for as long as I can remember. Instead of support I face a constant battle. The tales I could tell you wouldn’t even believe because how can these things be happening in our modern world?  It is unfathomable.

I look around at this world of ours, and I see so much good, so much beauty. And I see all the ways it can be, is being ruined. Division seems to be the name of the game, and that doesn’t equal anything good for the majority of us. The sums only work for the 1%. We need to see through the algorithms and truly see each other. We need to connect and empathise and understand and grow – together. We need to see the humanity in each other and let go of our preconceptions. Search our souls for the truth and treat each other with kindness, compassion, and respect.

We are broken, but not destroyed. We are divided but we can unite. We are burdened, but we can be free. I have to believe that. After all, “Happiness can be found even in the darkest times if one only remembers to turn on the light”.

Autism Myth Busting!

As part of Autism awareness month, and our Festival of Autism, we have been releasing a series of blog posts. As well as being lucky enough to gather some fantastic perspectives from colleagues, I wanted to share a blog post of my own too that has been percolating for some time!

This blog post intends to good naturedly ‘bust’ some of the misconceptions Autistic individuals and their families often face on a daily basis. Bear in mind no one rule will apply to everyone – every Autistic person is different just as every other person is, so where I have used common examples presentation is generally unique to every individual despite any commonalities.

Myth 1 – “You don’t look autistic”

This is a phrase that is used a lot – but the truth is Autism is an invisible condition. Often people will use this phrase in relation to Autistic individuals who are verbally articulate, or who have become adept at ‘masking’ any functional impact. Some Autistic people have external behaviours such as stimming (self-stimulatory behaviours such as rocking or flapping) or a sensitivity to noise that means they often wear ear defenders, leading to people assuming they are Autistic, but equally Autistic people can have very subtle stims and their outward appearance doesn’t necessarily belie what is happening internally.

Myth 2 – Autistic people cannot/don’t make eye contact

Autistic people CAN make eye contact. Difficulty making eye contact is just one possible characteristic of Autism. Often Autistic people can ‘fake’ eye contact by looking at other points of the face which can be indistinguishable from true eye contact. Some Autistic people may also make overly intense eye contact which can be perceived as staring inappropriately.

Myth 3 – Far more males than females are Autistic

Whilst gender ratio estimates have been suggested as high as 16 males to 1 female, the generally accepted consensus for some time has been 4 males to 1 female. However, experts are increasingly coming to believe that the ratio is far closer than previously estimated, with Tony Attwood suggesting it is as close as 2 males to 1 female. There are many possible reasons for this – such as females being more likely to go undiagnosed or misdiagnosed, due to their differing presentation, a bias in the diagnostic and screening tools used in assessment, and the differing personality traits males and females have learnt in society that affect presentation, with girls often being more internal and males sometimes presenting more external behaviours.

Myth 4 – Autistic people lack empathy

Autistic people often say that actually they feel an excess of empathy, sometimes struggling to differentiate other peoples’ emotions from their own, finding others’ sadness overwhelming. The lack of empathy theory originates from Baron-Cohen’s research into Theory of Mind which suggested Autistic people were ‘unable to put themselves in someone else’s shoes’ or understand that others have inner worlds – thought processes and memories that differ from their own. While Autistic people may struggle to instinctively understand these things, they will often endeavour to understand others, and most definitely can show empathy for others’ experiences and emotions.

Myth 5 – Autistic people can’t be chatty/articulate

Autistic people may be non-verbal, but there are lots of Autistic people that can be extremely articulate and expressive. As mentioned ‘masking’ or ‘camouflaging’ can be very powerful in social situations. Some Autistic people are overly social, so they may be extremely talkative and interactive – again sometimes to the extreme.

Myth 5 – Autism means you are less intellectually able

Autism is not an intellectual disability, although some Autistic individuals may have an intellectual disability in addition to their Autism. There are many Autistic people that are extremely intelligent, achieving high levels of education such as PHDs.

Myth 6 – Autism is over-diagnosed – and used as an excuse for bad parenting

Truthfully, it can (and often is) incredibly difficult to get a diagnosis of Autism. Some families fight for several years to get an assessment. The assessment process is usually extremely thorough, with evidence obtained across settings and uniform assessment tools used to diagnose according to internationally defined criteria. This process is often carried out by a multi-disciplinary team comprised of several professionals of different disciplines, such as a paediatrician, occupational therapist and speech and language therapist. If anything, research suggests that Autism is currently underdiagnosed.

Myth 7 – you can grow out of Autism

Autism is a lifelong neurodevelopmental condition. You definitely cannot grow out of it although with the right support and interventions any associated difficulties may reduce over time. Bear in mind that functioning is fluid and may fluctuate over a person’s life cycle, in response to major life events, times of increased stress or change or even on a daily basis (if not even more frequently).

Myth 8 – Autism is caused by ‘cold parents’

This myth comes from the old theories of ‘Refrigerator Mothers/Refrigerator Parents’ that circulated in the 1950s. Leo Kanner and Bruno Bettleheim were instrumental in the creation and dissemination of this theory – but we know now that Autism is absolutely not caused or perpetuated by poor or cold parenting. While we do not know the exact origin of Autism, it is now widely believed to be an unknown combination of genetic and environmental factors.

Myth 9 – we didn’t have Autism in my day

Yes, we did! The difference is that people with Autism either were missed or misdiagnosed, leaving them without support, or in other cases some were institutionalised, meaning they were essentially segregated and ‘invisible’ to a large part of society. A lot of people are now being diagnosed late in life, with a famous example being Anthony Hopkins, who says he struggled in school and always felt different but didn’t know why, finally being diagnosed in his seventies.

Myth 10 – everyone is a ‘little bit autistic’

This isn’t true. While everyone may identify with some Autistic traits, they aren’t a little bit Autistic, anymore than someone who suggests that a single trait such as liking a clean home means they are a little bit OCD (Obsessive Compulsive Disorder). There are strict diagnostic criteria to be assessed as Autistic which means that individuals will have to show traits in several areas and that these traits must be pervasive and lifelong. It can belittle an Autistic person’s life experience to suggest that everyone is a little bit Autistic because of one or two ‘quirks’ that correlate with Autistic traits. With that being said, we welcome the empathy these shared experiences can provide – if it is not equated with having the same life experience we have.

Myth 11 – Autistic people are loners

While some Autistic people prefer their own company and like a lot of alone time, as they find social demands overwhelming, that doesn’t necessarily make them loners. A lot of us are extremely social and have good social networks, though we often need to time to recover from the effects of social interaction.

Myth 12 – Autistic people are more likely to commit a crime

Research shows that Autistic people are more likely to be the victims and witnesses of crime than offenders. While there are certain risk factors that can make involvement with the Criminal Justice System more likely in some cases, such as social naivety leading to the risk of exploitation, the vast majority of Autistic people are law abiding with some studies finding them no more likely or less likely to commit a crime than the general population.

Myth 13 – The Autism Spectrum is a line – low functioning to high functioning

Autism is far too complex and multi-faceted to be described by simple functioning labels. An individual may be articulate, intellectually able and have a good social network – but they may also be self-harming and/or struggling to function with simple everyday tasks. The rate of suicide attempts in the ‘high functioning’ Autistic population is up to 9 times higher than in the general population. Other Autistic people may be labelled low functioning if they have poor verbal skills and struggle academically, but they could also be more content and functional on a daily level in some ways. It all comes down to how you think about ‘what is functional?’.

Spiky profiles are a better description – intense areas of skill coupled with intense areas of need.

Myth 14 – Autism is a mental health condition

While Autism often occurs alongside mental health conditions such as anxiety, Autism is not itself a mental health condition. It is a complex neurodevelopmental condition that is lifelong. Autism is accepted in law to be a physical difference in the brain and many prefer to think of it as simply a different neurotype.

Myth 15 – Oh like Rainman?

Nope. While there are Autistic people with savant skills such as those portrayed by Dustin Hoffman in this famous role, such as Stephen Wiltshire who can memorise the New York skyline after a helicopter ride and draw it from memory, the vast majority of us are as varied as anyone else and don’t possess a genius level ‘special talent’ such as this. We have strengths and weaknesses just as anyone does and our IQs are just as varied.

Thank you for reading and I hope the post helped provide some useful answers to common misconceptions!

Evening Out Equations

I look down at the pills in my hand. Have I timed this dose perfectly?

As perfectly as I can?

Because tonight I am going to a ball. A ball where I will have some alcoholic drinks, socialise, and hopefully, dance a little.

So this dose is all important, because it will be my only dose until tomorrow.

Take it too late, and the concoction will still be in too strong an effect when that first sip of alcohol hits my lips. That could leave me messy and sleepy. It could even be dangerous given the not messing around here nature of the drugs I’m prescribed.

Take it too early, and all my pain relief will have evaporated before I begin, leaving me in agony, incredibly irritable, with a snowball’s chance in hell of dancing even a little.

I’m so looking forward to this, to a few drinks with friends. But my mind is running constant equations in the background. What will missing this dose mean for me. What will the hangover mean for me? Will I lose two or three days as a result? A week?

How bad will ‘the horrors’ be tomorrow morning? I’m not feeling too strong mentally lately, my stress has me living on a tightrope of emotion, will I cope with the inevitable plunge in mood a night off all my medication and on the depressant that is alcohol will bring?

Hours of fun divided by days of payback – trying to decide where my ratio lies.

I don’t NEED alcohol to have a good time. I often go out without it. But every now and then I just enjoy the feeling, the theatre of the cocktails or the salt tequila lemon and the camaraderie with my peers.

Tonight I have decided to ignore the equation and pay the price. I’m sure it will be worth it. I’ll probably still be sure tomorrow morning. Don’t ask me Monday though….

Poetry

I recently wrote a poem that I shared on my personal facebook page. It got a great reaction so I thought I would share it here – hope you like it!

You tell me ‘I don’t look autistic’ as though I’ve won a prize

When really you make it harder

For me to let go of all the lies

My pretence is successful

I can almost even ‘pass’

If you could see behind the curtain

You might understand the farce

My normalcy is faked

A cunning rehearsed role

It binds me and constrains me

Stealing pieces of my soul

I must be ‘mild’ you tell me

I don’t rock or flap or twirl

My stims are much more subtle

An elastic that I curl

High functioning right you ask me

As if you know what that might mean

It means I struggle on in silence

Hide my worries away, unseen

I don’t look autistic you promise

Little comfort that provides

Because no matter how well I hide it

I’m autistic on the inside.

Emma Durman 3-4-18