Autism: a brief introduction

November last year I was invited to give a short talk at Bishop Grosseteste University, to a PGCE cohort, describing my lived experience of autism. As Darkside begins a new project dedicated to autistic women, I thought it might be a good idea to share the transcript of that talk.

It combined research and experience into a compelling narrative that I hope challenges the prevailing social construct of autism as ‘impairment.’ A construct written by those in transference of their own failings in empathy and theory of mind, and a construct that fails catastrophically to actually effect positive change in the lives of autistic people.

Slide 1

I’ve been doing a lot of research in preparation for this talk.  And these are the words that I’ve come across when reading about autism.  These are the words that you’ll have come across when reading about autism.  These are the words that professionals use to define autism to the general public.

Slide 2

What about these words?  Here’s some back story.

In 2014 I rented space in a gym and started Darkside Training, women-only strength and powerlifting gym.  These are some of the reviews that I received in those first few months of coaching. Five years later, this year in fact, I was diagnosed with autism.

Autism is defined as a triad of impairments.  Deficits in imagination, social communication and social interaction.  Professionals have taken the prevailing social constructs, defined them as normal and labelled difference as deficit.  Difference as impairment.  Difference as lesser than.

Slide 3

Neurotypical simply means neurologically typical, so in other words ‘normal.’

This was written by an autistic woman, she has a website devoted to the study of the neurobiologically typical, including a diagnostic scale if you’d like to measure your neurotypical traits.  In her website the world is turned upside down with autism the prevailing social construct and NTs (neurotypicals) the poor, pitied unfortunate.  Now this illustrates quite nicely not only the autistic capacity for sarcasm, but also the absurdity and malleability of accepted social structure. 

Autism is framed from the perspective of neurotypical observation and understanding, so conventional wisdom assumes that those with autism desire the same social constructs as neurotypicals and are simply deficient in their ability to obtain them. Neurotypicals observe behaviours and construct theories and ignore completely the necessary truth in autistic reality and perception.

Slide 4

This is the Sally-Anne Test.  Meet Sally, meet Anne.  Sally puts her ball in the basket and leaves the room.  Anne moves the ball from the basket to her box.  When Sally comes back, where will she look for the ball?

This is called a false belief test and has been used, particularly by Simon Baron-Cohen, a supposed ‘specialist’ in autism research, to ‘prove’ that autistic people do not have theory of mind – theory of mind is the ability to understand that other people have their own thoughts, values and beliefs.  Autistic people will often say that Sally will look in the box, rather than the basket, for her ball.

I have issue with the presumptions of this test, particularly with regard to its validity – are they measuring what they think they’re measuring?  Firstly, they’re using imaginative play with children who do not voluntarily engage in imaginative play and then the syntactic form of the questions posed by the test is some of the most complex in the English language.  So that when autistic and deaf children are given a false belief test administered visually rather than verbally, they score higher than non-autistic hearing children.

Simon Baron-Cohen has then described ToM as a core component of humanity that is impaired in autistic people.  I am less human than he is.  He posits that by lacking ToM autistic people must then lack empathy, a dangerous position when empathy is also considered an essential human trait.

He is also responsible for the ‘extreme male brain’ hypothesis, deciding that systemising is a biologically based male trait and empathising is a biologically based female trait, which is still, dangerously, impacting on the diagnosis of women with autism.  Because if women are biologically programmed towards empathy, which autistic people are deficient in, then how can women be autistic?

Simon Baron-Cohen has a lot to answer for. 

I have studied theory of mind for 31 years.  I have observed, learned and understood enough to pass as normal since my twenties.  The converse cannot be said to be true however.  Other people have not observed, learned or understood my behaviour enough to pass as autistic.  The thought would never even occur to them. 

Slide 5

I love this quote, from Olga Bogdashina, because it illustrates perfectly the dichotomy of perception.

And actually, if we’re going to use theory of mind as a concept, then we have to recognise that if autistic people don’t have theory of neurotypical mind then neurotypicals certainly don’t have theory of autistic mind.

Autism professionals don’t have theory of autism parent mind and autism parents don’t have theory of autism professional mind. 

None of us understand each other. 

And instead of using that lack of understanding to imply a lack of humanity, how about we use it to marvel at the complexity and multiplicity of human experience?

Slide 6

Let’s look at executive function, the ability to manage ourselves and lives, to plan and carry out tasks.  I have excellent executive function.  I manage 11 coaches and 200 women training in over 50 sessions each week.  I organise large events and write successful grant proposals.  I know what’s happening every hour of every day in that gym and I manage it well.

Then in September, as I attempted to integrate into university life, my executive function declined, dramatically, I struggled to focus, to finish tasks, to remember sequences.  And it took weeks out of this environment for that to come back. 

It wasn’t just the time or task commitment of university, because I’ve worked 70/80 hour weeks for the last 5 years, that’s entrepreneurship.  My decline in executive function wasn’t just about time, or lack thereof.

Ogawa et al., studied chronic stress in children with and without autism.  ASD – autism spectrum disorder and TD – typically developing.  They used strands of hair to test for cortisol, stress levels, as hair will show a long term impact, not affected by acute situations.  They found that children with autism had higher levels of chronic stress than those without, and that that chronic stress impacted on the autistic children’s spatial working memory, an aspect of executive function.

This chronic stress arose from the environment that those children were placed within, and its effects on executive function suggest that executive function deficits are not an inherent biological trait of autism.

And so those autistic people who do struggle with executive function, is it a side effect of attempting to fit into a society that clearly isn’t interested in autistic perception?  What would happen if those autistic people had the freedom to create their own environment?  Moderate their own sensory input?  Set their own  appropriate boundaries?

Because much of an autistic’s life is spent suffering through unnecessary sensory overload, navigating ambiguous social contexts and enduring the ignorance and ambivalence of those who apparently, have the empathy that we do not.

Slide 7

This all culminates in some serious social and organisational harm.

In the general population it is men who are at the highest risk of suicide, they accounted for ¾ of UK deaths by suicide in 2018, and suicide is the most common cause of death for men aged 20 – 49.

In the autistic population however, women are at most risk.  Women with autism are 13 times more likely to die by suicide than their non-autistic counterparts.  Not just think about, not attempt, but actually die.  Women with autism are 13 times more likely to DIE by suicide.

And particularly relevant for us as teachers, children with autism are 28 times more likely to think about or attempt suicide, 28 times more likely.

And even when we removed actual autism diagnoses from the research population, elevated autistic traits are still associated with suicide attempts.

Slide 8

It’s only very recently, that researchers have tried to find out why autistic people are at such a high risk.

Non-suicidal self injury is fairly self explanatory, let’s talk camouflaging.

Slide 9

In order to engage in camouflaging, you must have insight into your own behaviours, how these may be negatively perceived by others, and then have a strong motivation to adapt your social behaviour to be accepted. 

Now, does this sound like someone with social deficits? 

Would a socially deficient person be able to understand how their behaviour is observed by others and then change that behaviour in order to fit in?  How can a person who lacks theory of mind understand that they are being negatively perceived?  How can a person without empathy be socially motivated to perform acceptable behaviour?

To accept that autistic people camouflage, you have to then question the prevailing theoretical models of autism.

But of course, constantly hiding who you are has its downsides.  Anxiety, depression, loss of identity, self-hatred.

This camouflaging is particularly dangerous for women.  The ratio of autism diagnoses in men and women is currently around 3:1, 3 men for every 1 woman.  However, this is for autism as a whole spectrum.  When we remove intellectual disability and focus only on high functioning autism, studies are suggesting that the ratio is closer to 9:1.  9 men for every 1 woman.

If I went to the doctor with my prevailing symptoms of generalised anxiety, depression, disassociation, hypersensitivity and social anxiety, I’d be prescribed propranolol or citalopram.  Not referred for an autism assessment.  How many of those missing women in the diagnostic ratios have been misdiagnosed with psychiatric conditions?

Slide 10

And then when we try to explain how we’re actually feeling, no one is actually listening.  This is a quote from a participant in the first research article here, when talking with a therapist. The therapist expected her to react in the same way as a neurotypical person, even knowing that she was autistic.  The therapist could not step outside of their own experience in order to empathise with their patient’s experience.  So who has theory of mind now?

This over-reactive sensory perception I think is key to autistic experience.  Certainly in my experience.  The majority of observable social, communication and executive function deficits can be traced back to sensory overload.  Repetitive behaviour and adherence to routines is an anxiety response due to the stress of sensory overload.  And we’re just starting to see research showing the relationship between autism and PTSD (post traumatic stress disorder) as exposure to sensory overload for extended periods of time constitutes actual physiological and psychological trauma to the autistic person. 

This PTSD link could also explain the autistic lack of episodic memory (our autobiographical memory) which is often, rather offensively, viewed as lack of self awareness or self reflection. 

And it could explain anxiety that is more akin to the adrenaline fight, flight or freeze response.  A physical manifestation of panic and trauma.

Put a neurotypical person in a war zone, and they may come back to normal life with observable autistic traits.  Maybe normal life is a war zone for the autistic person. 

Slide 11

We each have a social imperative to effect meaningful change in our communities.  To support, empower and understand the differences that make us uniquely human.  There is no longer any excuse for wilful ignorance, or arrogant misinterpretation.

I also showed an excerpt from the video below, as its depiction of sensory overload via augmented video is actually quite accurate.

Questions or comments? Feel free to drop me a message xx

North Midlands Powerlifting Championships, 15th April 2017

What a fantastic day!!  7 of our ladies attended the North Midlands Powerlifting Championships on the Saturday, for 3 of them it was their very first time!

We started with Claire, Lisa, Holly Cl. and Krystyna in the first group.  Holly was going for her British qualifying total and achieved it with plenty to spare, finishing with a 75kg squat, 35kg bench and double bodyweight 105kg deadlift, very impressive Holly!  For Claire and Lisa it was their first comp and they did so well.  Claire squatted 70kg, benched 35kg and deadlifted 85kg whilst Lisa finished on a 65kg squat, brilliant 40kg bench and 82.5kg deadlift :).  Krystyna was focused and fast with 70kg for her squat, lovely 45kg bench and 85kg deadlift!!

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In the second group Rachael was another first timer, so strong with a 90kg squat, 42.5kg bench and massive 120kg deadlift!  Brigette with the awesome blue hair squatted 82.5kg, benched 37.5kg and deadlifted a milestone 100kg and Holly Co. finished with 102.5kg on her squat, 55kg bench and 15kg comp PB deadlift of 135kg :).

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It takes a lot of courage to step up onto that platform and I am so impressed and proud of each and every one of you <3.

Photo credits to Chris Bradbury and Bob Willmington.  Our senior coach Beth did a fantastic job in the warm up room and thank you to all the Darkside ladies who came down to support, it means a lot :).  Thanks to Marc Giles and his fabulous Horncastle team who have organised and delivered another excellent comp.  Next one is August, can’t wait!

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A Different Approach

It’s that time of year, again, when we get bombarded with ‘body transformations,’ ‘cleanses,’ ‘diet tricks’ and ‘boot camps’ that will enable us to lose 10kg in 10 days and love ourselves again because we’re skinny.

Last year, it made it me angry.  This year, I’m just tired.  I’m tired of the same propaganda spewed by the fitness industry that makes an unfathomable amount of money from women hating themselves.  I’m tired of the malicious marketing that encourages women believe that fitness models and bikini competitors are at the peak of health and beauty.  I’m tired of the focus on a random set of appearance criteria instead of strength and performance.

In a culture that idolises the concept of ‘go hard or go home,’ sometimes it’s best to just go home.  ‘Sweat is fat crying’ is not only biologically impossible but rather disturbing because both dietary and body fat are necessary and important to our health and wellbeing.  The only time we should ‘think of the calories this season’ is in how they can nourish our body and be awesomely delicious.

Memes that praise and admire vomiting in the gym are not ok – this kind of ‘beasting’ simply induces muscle soreness, which tells us nothing other than you’ve done something different, and can actually be counterproductive to progress.

Labelling certain foods as ‘guilt-free’ is absurd – some foods are more nutrient dense than others but they all play their part in the enjoyment life.

Tying self worth to random (and largely unhealthy) standards of physical beauty is a sure way to be forever unhappy with yourself.

Food is amazing.  Moving your body in a way that you enjoy is amazing.  Get strong, have fun and feel the #calorielove.

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North Midlands Powerlifting Championships – November 2016

Well, that was a day!  Darkside took 22 women to their local powerlifting championships on the 19th November 2016, 14 of whom were first timers.  Incredibly impressed with their determination, focus and strength.

The morning started with Evie, hitting some fab new squat and bench PBs with a 60kg squat, 37.5kg bench and 70kg deadlift, well done!  Holly C. got comp PBs across the board with a 65kg squat, 32.5kg bench (finally!) and huge 95kg deadlift.  Leah, her very first comp, was completely unphased squatting 82.5kg, benching 45kg and deadlifting 92.5kg, very strong.  Beth went an unprecedented 8/9 with fab comp PBs, 87.5kg squat, 45kg bench and 117.5kg deadlift!

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In the second group we had 4 new competitors.  Sarah K. narrowly missed out on her qualifying total for the British Masters, but still squatted a fast 60kg, benched 47.5kg and deadlifted a solid 115kg.  Faye hit 75kg for her squat, big 42.5kg bench and 90kg deadlift.  Laura M. squatted 77.5kg, benched a beautiful 45kg and deadlifted 95g and Carrie made her qualifying total for the British Masters with an 85kg squat, 47.5kg bench and 115kg deadlift, well done!!  Nikki S. made some awesome new comp PBs, 70kg squat, 35kg bench and 87.5kg deadlift!

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7 new lifters in the third group, but well supported by our experienced ladies.  Poppy hit a great 60kg squat, 37.5kg bench and 80kg deadlift, Brigette squatted 75kg, benched 35kg and deadlifted a fast 82.5kg, Dawn’s squat reached a beautiful 77.5kg, along with a 40kg bench and 97.5kg deadlift, Katie F. squatted 80kg, benched a solid 32.5kg and deadlifted 105kg and Nicky H. made her qualifying total for the British Masters with an 82.5kg squat, 52.5kg bench and huge 120kg deadlift!

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Fran squatted a focused 87.5kg, benched 42.5kg and deadlifted 115kg, very focused and solid and whilst Jodi failed her first squat due to nerves she rallied beautifully and finished with a fantastic 90kg, along with a 52.5kg bench and 115kg deadlift!  Carla, Emma H. and Magdalena all made brilliant comp PBs with Carla squatting her milestone 100kg, benching 42.5kg and deadlifting 125kg, Emma also got her milestone 100kg squat with a lovely 50kg bench and 135kg deadlift and Magdalena squatted 125kg, benched 57.5kg and deadlifted an amazing 150kg, qualifying for the Senior British!

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Our final group was Clare, Katie N. and Laura Ma.  Clare made her qualifying total for the British Masters with a 100kg deadlift, 45kg bench and 112.5kg deadlift, all comp PBs as well!  Katie and Laura were first timers with Katie squatting 85kg, benching 50kg and deadlifting a fab 120kg and Laura hitting 92.5kg on her squat with a 40kg bench and 105kg deadlift!

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Huge thanks to Laura C. who tirelessly ran the warm up room with speed and focus and to our group ‘mothers’ who helped the newbies and made sure everyone was in the right place at the right time!  We had an awesome army of Darksiders helping to load and spot for the warm ups and yelling for us on the platform.  Thank you Marc Giles and your Horncastle team for putting on another organised and brilliantly run competition.

All photo credits to Chris Bradbury, thank you!

I never fail to be impressed by the Darkside lifters, you are a community, a family and you support each-other like nothing I have ever seen.  Laughter, hugs and cake.  And a whole lot of strength.

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Food

IMG_20151115_144126As we head through the Christmas season, we’re bombarded with countless new diets, weight-loss plans and ‘body transformations.’ Ripped bodies are everywhere, and they’re seemingly happy and healthy and whatever product they’re selling at extortionate prices was essential to their success. This is the fitness and weight-loss industry and 99% of what they’re selling us a lie.

If a company requires us to buy their product to get healthy then they’re likely more interested in their own profit than our health. If a ‘body transformation’ participant lost 50 pounds in 28 days then they’re probably either lyinIMG_20151102_212805g or they did it in an unhealthy manner. If a particular weight loss plan puts you on 1200 calories or less per day, with no carbs or no fats or some other hyper-restrictive, arbitrary nonsense, then it’s not sustainable and it’s certainly not healthy.

As you can probably tell, this stuff makes me just a little annoyed. Because the entire industry is only profitable if women (and men too) dislike themselves. We’re fat, ugly, lazy, gluttonous, unworthy. These messages are internalised in a disturbingly prolific way and no matter how feminist or body positive we believe ourselves to be, it is incredibly difficult to erase 50 odd years of social conditioning in self-hatred and dissatisfaction.

We need to stop assigning moral value to food, certain foods are more nutrient dense than others but that does not IMG_20151227_173019make them ‘good’ or ‘bad,’ it simply makes them a choice. If you can tolerate gluten then it is not evil, small amounts of sugar within a diet full of vegetables and protein is absolutely fine and carbs can be eaten at any time of the day that works best for you.

There is no need to use exercise as punishment for eating ‘bad’ food and guilt has no place in nutrition. None.

Eating disordered behaviour has almost become the norm, from restriction to binging and the emotional fallout that comes with it and it’s time for it to stop. Eat the food that makes you feel good and perform well. There is no one way that works for everyone so find what works for you and above all, whatever you’re eating, enjoy it.

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‘Fitspiration.’

WP_20150514_004[1]If you’ve been following my FB page you may have noticed that, other than the odd bit of feminist literature, I don’t share the standard ‘motivational’ pictures or memes that you will often see in fitness and weight lifting pages.

My reasons for this are very simple.

These collections of images are generally termed as ‘fitspiration’ and assigned the verbs of motivational and inspiring.  They depict women with visible muscles and very little fat mass posing in a sexually suggestive manner.  Whilst I am not by any means belittling the dedication and work that goes into creating such a physique, I would like to make the point that, yet again, instead of celebrating the achievements and performances of women, we are celebrating their ability to get other people sexually aroused.

It is one thing to take a photograph of a lean and muscular woman who is proud of what she has achieved physically, it is another to take a photograph of her posed arse in a thong.

And then photoshop it bigger, smoother, glossier.

This is porn.

It is not motivational or inspiring, it is simply depressing.WP_20150513_005[1]

We all judge people based on their attractiveness, it is an innate, evolutionary instinct that allows us to pass the best genes onto our progeny.  This does not mean that we, women or men, should be judged solely on this single variable.  We are all multi-faceted individuals and women have fought and suffered and died in order that society recognise this basic fact.

Fitspiration and many media portrayals of women (think music videos) propagate a value system based upon allure rather than performance and create a sense of cognitive dissonance that we don’t live up to this physical ‘ideal.’  Whether we believe that it is ideal or not.

So no, you will not find this kind of imagery on my page.  What you will find, however, are pictures of women who are as diverse as they are brilliant.  Women who are awe-inspiring because they conquered their fears and achieved their goals.

That is what Darkside is about.  That is what you will find on my page.

Strength.  Power.  Community.

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