Meghan Ashburn & Jules Edwards – I will die on this Hill

Book review by Katie Munday (they / them)

[Trigger warning: talk on filicide, suicide and death.]

Book cover: cartoon illustrations of Meghan, a white person, with long blonde hair, thick framed glasses, wearing a black hoodie. They are stood back-to-back with a light-brown skin Jules, who is wearing a black low-cut t-shirt. They are against a green grass back drop, with a slither of light blue sky at the top. Yellow text reads: I will die on this Hill: Autistic adults, autism parents and the children who deserve a better world. Artwork by Nathan McConell (Growing Up Autie).

Written by Meghan Ashburn and Jules Edwards, I will die on this Hill looks at the struggle between Autistic people, ‘autism parents’ and the children who often get caught in the middle.

Meghan Ashburn (Not an Autism Mom) is an educational consultant, trainer and writer, passionate about helping schools create more inclusive and accessible environments for children.

Jules Edwards (Autistic, typing) is an Indigenous Autistic mother of Autistic children, passionate about sharing knowledge, healing trauma, and building community in alignment with her cultural values.

Nathan McConell (Growing Up Autie) illustrated the front cover and pictures of individual chapter writers.

The book collects brilliant reflections from some of the most important people in Autistic advocacy and activism including Kieran Rose, Kristy Forbes, Cole Sorenson and Danny Whitty. These are sprinkled throughout the book, between Meghan’s and Jules’ chapters, under headings such as ‘The Worst of Each other’, ‘Let’s get to Work’ and ‘Where do I fit in?’.

Meghan and Jules reflect on the division between Autistic activists and ‘autism mums’ through their own relationship which began with consistent and often strained (mis)communication. Through this persistent need to teach and learn with each other Meghan and Jules were unwittingly creating a template of how we can all work together to protect and champion the lives of Autistic children. So, they wrote a book about it!

There are too many good parts of this book to list but I wanted to highlight two particular favorite chapters of mine, Cara and Danny Whitty’s chapters. Cara wrote of how her ‘mother’ struggled with looking after her Neurodivergent children and how this ultimately ended with her killing her son, trying to kill her daughter and then herself. This chapter is a brave confirmation of the very real harm that Autistic people face, often from within our own families. Cara finishes her chapter by saying “if you ever feel like you can’t parent them [your children] safely, get help.” (p.172). There is no shame in needing or asking for help, parenting is beyond overwhelming and difficult and we all need support some times.

Danny Whitty’s chapter was just as eye-opening, he wrote about the pathology around autism and being non-speaking and how this “harms whole families, not just the Autistic individuals. It deprives them of the opportunity to fully know and love their Autistic family member. Which is a tragic loss.” (p.114). Unfortunately, ideas such as ‘curing’ Autistic people are often filtered down to parents who believe autism to be a big baddy taking over their children. This can be worse still for Autistic people who have different ways of communicating and do get their communication needs supported.

The writers throughout I will die on this Hill do not shy away from the interconnection of autism and trauma, they understand that being Autistic is another part of human diversity which comes with both unimaginable struggle and deep joy. Intersectionality is also reflected on throughout the book, especially Jules’ Ojibwe heritage and culture.

Key points and resources are at the end of each chapter. The book can be read in stages and would make a great reference book. I believe the book assumes some knowledge of the reader, despite this I would still very much suggest this as a go-to book for Autistic people and those who love and support us.

I saw myself reflected in these pages, from Morenike Giwa Onaiwu’s view of being Autistic as neither good or bad: just being, to Kimberly Collins’ experience of being shut-down or ignored in parent groups due to being Autistic. Autistic and non-Autistic experiences of activism and support groups are explored critically, appreciating that they are equal parts powerful, frustrating, intimate, bleak and empowering.

I will die on this Hill is an important – and sometimes difficult –  book to read. Meghan, Jules and the other writers look at our history of infighting and explore how this doesn’t help any of us. The writing is insightful, personal, intersectional and brutally honest. Hopefully, this book marks a rise in all of us working together against the real enemy of oppressive, racist and ableist systems which hold us down whilst asking us why we can’t do better.

“Our children think autistically, feel autistically and live autistically.”

Meghan Ashburn, p.118

Autistic theories of Autistic experience

Find here explainer videos about the two Autistic-derived theories of Autistic experience: Double empathy problem (Damian Milton), and Monotropism theory (Dinah Murray):

Double-empathy explainer video by Kieran Rose (The Autistic Advocate):

Monotropism explainer video by Kieran Rose (The Autistic Advocate):

Reviewed by young people, double empathy explained:

Screenshot of the webpage from Frontiers for Young Minds: “Double Empathy: Why Autistic People Are Often Misunderstood”

Aucademy discussion on the double empathy problem from theory (Damian Milton), to evidence it occurs, to evidence of why it occurs (Rachel Cullen):

Autistic April: Aucademy downloadable educational posters to share this April (& all year!)

Can you help Aucademy and #Autistic people this Autistic April (and all year actually!)?

Please print and/or share our education posters and ask your GP surgery; supermarkets; schools; universities; wellbeing centres; therapists; job centres; garden centres; councils; church; families; friends; daycare; nurseries; gyms – ANYONE AND ANYWHERE you can display them.

BLUE A3 POSTER: https://aucademy.co.uk/…/BLUE-A3-Aucademy-flyer-2.pdf.pdf

WHITE A3 POSTER: https://aucademy.co.uk/…/WHITE-A3-Aucademy-flyer.pdf.pdf

BLUE A4 POSTER: https://aucademy.co.uk/…/BLUE-A4-Aucademy-flyer-2022.pdf

WHITE A4 POSTER: https://aucademy.co.uk/…/WHITE-A4-Aucademy-flyer-2022.pdf

All four PDFs also found here: https://aucademy.co.uk/books/

#actuallyautistic#autismawareness#autismawarenessmonth#autismacceptance#AutismAcceptanceMonth#autisticpride#AutisticAcceptance#neurodiversity#nuerodivergent#neuroqueer#AutisticApril#aucademy#autisticinacademia

Picture of the PDF printable posters

Resources supporting preference, but importantly wellbeing properties, of identity-first language: we are Autistic

The use of identity-first language to describe our Autistic selves, or be described by non-autistic people, is not up for debate with non-autistic people. But time and again it is demanded that we Autistic people – not “people with autism spectrum disorder” – provide “evidence” for the use of identity-first over person-first language.

Even more frustratingly – angering even – is that professionals do not expect the same level of “evidence” for the use of person-first language when interacting with Autistic people.

And so, find some resources here to demonstrate both preference for identity-first language, but more importantly the psychologically protective properties of being an Autistic person, not a “person with autism [spectrum disorder]”.


FURTHER NOTES:

Some people around young Autistic people will say they asked their young person about their preference – to be referred to as an Autistic person, or a “person with autism [spectrum disorder]”, stating that they went with their young person’s preference for person-first language – or even that the young person didn’t care about it.

The above scenario is not an acceptable reason to ignore the politics of a young persons’ life. Absolutely language should not be forced on the minority in question – but that does not preclude you from learning about the importance – the psychological and political importance – of identity-first versus person-first language regarding yourself, your young person, the people in your care, in your class, in your employment.

And there is growing evidence that humanising us via identity-first language and the surrounding, far greater Autistic community and cultural narrative, actually improves psychological wellbeing of Autistic people – a population where the greatest cause of death is suicide. And so, any help our community can get to reduce early deaths and a life of prejudice and discrimination should be deeply and critically considered.

That you were taught that person-first language is what you should use is no longer an acceptable response when told otherwise. As Dr Nick Walker says: “Sentences that start “person-first language is what I was taught to use” should end with “but now I know better & will never use it again”.

Be the change you want to see, importantly, be the change we desperately need. Thank you.


These psychologically protective properties are somewhat demonstrated in Chris Bonnello of Autistic not Weird‘s latest survey with 11,212 respondents (7,491 of whom were Autistic, including non-speaking Autistic people), which demonstrated that those who identified as Autistic were more likely to like being Autistic, compared to those who considered themselves to be “people with autism”:

Chris Bonnello of Autistic not Weird‘s latest 2022 survey with 11,212 respondents (7,491 of whom were Autistic, including non-speaking Autistic people). These two tables show those who use identity-first language were more likely to like being Autistic than those who use person-first language.

Resources

ARTICLES/BLOGS:


SCREENSHOTS OF POLLS/SURVEYS:

Chris Bonnello of Autistic not Weird‘s latest 2022 survey with 11,212 respondents (7,491 of whom were Autistic, including non-speaking Autistic people). A marked increase from the 2018 survey (screenshot below) where 51.62% of Autistic people preferred identity-first language, compared with 76.16% of AUtistic people in 2022.

Screenshot of Autistic not Weird large survey 2018, showing 51.62% of Autistic respondents preferred Autistic person

As much as Aucademy detests autism $peaks, their poll with 16,151 votes backfired on them, as 69% voted for “I am Autistic” over “I have autism”

VIDEO SOURCES

YouTube video: Chloe Farahar: A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person)

YouTube video: The importance of Autistic language – what’s in a name?

YouTube video on the important difference between the abstract “autism” and tangible Autistic experience.

YouTube video: Chloe Farahar: Why we should be fighting *prejudice* toward Autistic people, not “autism stigma”

SHAREABLE INFOGRAPHICS



“neurology is not an accessory” by identityfirstautistic.org

Language for the bin (& what to use instead)!

Chloe’s short video on the importance of language – focusing on the identity first preference of Autistic people
In the binKeep, practice, and role model
Person with autism
On the spectrum
 Autism

Disease
Disorder
Illness
Mental illness
Problem
Issue
Deficit
Impairment
Pathological 
 
Challenging
 
 
Violent
 
 
Low functioning
High functioning
Severe/mild autism
 
 
Traits
Symptoms
Risk of autism
 
Cure
Treatment
Intervention
Strategies
 

Behaviour
 
 
Special interests
Autistic person
 
 

Neurodevelopmental difference
Neurodivergence
Difference
 
 
 

 
 
 
Challenged by e.g. the environment

 
Anxious; distressed; meltdown
 

Support need/s – and be specific
 
 
 

Experience/s; expression/s
 
 



(JUST AVOID) Improve wellbeing (not change autism)
 
 
Feelings/emotions – inner world
 

Specialisation/s

A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person)…

This video accompanies an invited article for University College London

Question: Is identifying with social groups beneficial to people’s health and wellbeing? Whilst marking undergrad essays on this question back in 2020 – my mind began to wander, as it is prone to do, to Autistic things. Although my PhD was in the field of social psychology – where I attempted to reduce mental health stigma with the neurodiversity narrative – I had become so engrossed in my little sliver of the field I forgot about other social psychological theories and approaches. I researched the references my students were citing and made a short Twitter thread of my thoughts regarding the psychologically important difference between being a “person with autism” and an Autistic person. The difference between belonging to a stigmatised group, and the social cure properties of strongly identifying with an Autistic identity…article continued here.

How do I Get my Child to…X?

Saturday 15th August 2020 – by Harry Thompson

It is no secret to my listeners, readers and friends that in my experience in working with PDA families, I have come to loathe one, simple question: “How do I get my child to X?” Now on the surface, this question may seem harmless and reasonable, but let me explain to you why I find it so bothersome, and why it could potentially be damaging.

PDA (which stands for “Pathological (horrible word)” Demand Avoidance is understood by most as an ‘anxiety-driven need to be in control’. A demand represents the venom which drips from the fangs of a viper. A demand is a dangerous agent that poses a direct threat to a PDA person’s sense of freedom – our most essential nutrient. When you are PDA, feeling free or in control takes precedence over anything else. If control or freedom are lost, the PDA person will resort to most anything to regain it. I describe the PDA person’s relationship to control and freedom as being comparable to that of a mother and her child, in the sense that it is maternal. Losing control can feel like losing something you need to protect and keep an eye on at all times.

 Asking the question “How do I get my child to X?” isn’t only indicative of the parent consciously or unconsciously trying to seize control from the child, but it also illustrates that there is an emotional and psychological gulf between the parent and their PDA child. Being PDA means that in order to cooperate with a person, we have to be on the same level as them. It is for this reason that establishing a rapport and presenting oneself as the child’s equal must be the go-to approach. Any attempts by an adult – the parent or teacher, et cetera – to impose upon the child an instruction, or authority in general, will be met with resistance. The PDA child is unable to cooperate with a person who has not yet earnt their trust. Furthermore, the idea of fixed roles – teacher, doctor, and even parent – can be perplexing. If an authority figure presents themselves as the child’s superior and keeps their role at the fore, this in effect conceals a person’s humanness. Who could possibly comply with a non-human presenting itself as your superior who wishes to steal your life-force?

 I also find the question “How do I get my child to do X?” problematic in the sense that it suggests there is little or no interest on the part of the parent in accessing or learning more about their PDA child’s world – which would be a preliminary stage in meeting the child on their level. This is an example of invalidating the child’s experience. The PDA child intuitively knows who is or isn’t on their level. It is my personal belief that this in part marks the inception of the positive or negative PDA social obsession – which is, for the record, part of the diagnostic criteria.

 For example, when I meet a new person, I instinctively start trying to work out whether or not there can be harmony between us. I am on the lookout for absentmindedness, limited capacity to understand autism, PDA and neurodiversity, and self-centredness. If either of these things exist, I am on high alert. I know I have to be on the same level as people in order to cooperate with them or form relationships with them, so if there exists an unbridgeable gulf between myself and another, I either want to find quick and efficient ways of reconciling my world with theirs, clown around and be silly, or just stay away completely.

 Despite everything I have said thus far, I am aware that sometimes parents phrase a question in such a way due to it being, say, a non-negotiable. Even still, there are alternatives to asking, “How do I get my child to X?” I often encourage parents to become entrepreneurial – to see themselves as selling a product. As opposed to being dictatorial – ordering their child to do something. My PDA law is inspiration over instruction – you cannot push us into anything, but we can be lured in.

 If a parent can neutrally convey or demonstrate the intrinsic value of an activity, ritual or practise, and so long as we are aware that doing something will not lead to loss of control or diminishing returns, there isn’t a reason why the thing can’t be done. Reciprocity isn’t only important in personal relationships; it’s also important when it comes to a PDA person’s activities too. If taking a step forward means that control is lost and no benefit reaped, then the activity itself is flawed and inherently demanding. When it comes to PDA, there has to be a compelling ‘what’s in it for me?’ factor. I always say that I don’t write books or blogs, I don’t give talks and I don’t make YouTube videos. I BECOME the article I am writing. I BECOME the talk I am giving, and I BECOME the YouTube video I am recording. I don’t DO anything – if I am doing something, this implies separation between myself and the thing I intend to do, leaving room for a demand to wiggle its way in. If I become the physical embodiment of the thing I intend to do, there is no separation, and thus the thing becomes possible, not because I do it but because I become it. This process can partly be described as a flow state – becoming so immersed in an activity that you become one with it.

It is important to note that this is not the same as offering a reward – reward and punishment systems never works for PDA, as remaining in control is the greatest reward of all. Rewards set and defined by parents for good behaviour are forms of extrinsic motivation, whereas a PDA child being drawn to something on the basis they have ascertained the thing’s intrinsic value is a form of intrinsic motivation – the only way a PDA child CAN be motivated.

 Instead of asking “how do I get my child to X?” perhaps some better questions would be “is X really that important?” “What is the true meaning of why we do X?” “Why does my child avoid X?” “What could it be about X that my child finds so unsafe?” These questions are less anxiety-provoking for me because they succeed in challenging the notion of X, and at no point does the child’s experience get invalidated, because there is a genuine desire to understand the child’s world, and not just an attempt to get them to comply.

Why we’re all weird, but nobody is ill

Blog post – Chloe

Prof Peter Kinderman , someone I have had the pleasure of meeting, is a kind and empathetic professor of Clinical Psychology at the University of Liverpool. His work seeks to address the real causes of psychological distress, placing the causes more accurately outside of a persons head and more firmly in social contexts.

This is particularly important when we consider the psychological distress many Autistic and neurodivergent people experience, where our neurodevelopmental difference is blamed for the psychological distress we experience, instead of placing the onus on the environment that led to the distress.

“Dr Peter Kinderman argues that mental emotional distress is not a sign of illness but a symptom of social causes and pressure. Depression, anxiety and even schizophrenia can be serious and debilitating experiences for people; but Dr Kinderman says the causes of these symptoms will not be found inside the brain but rather outside the person. Unemployment, bullying, child abuse, these are often the causes of mental distress – and the treatment he prescribes is for all of us to take greater social responsibility to address the situation…”

This quote was originally from a University of Liverpool podcast with Peter Kinderman, Episode 7: Is it really mental ‘illness’?, which sadly is no longer available, but you can listen to Peter here: https://getpodcast.com/podcast/the-wrong-kind-of-mad/episode-8-peter-kinderman-on-understanding-distress-without-pathologis_1c6a4ba21b

Autistic communication – no deficit

Blog post – Chloe

One of the most important pieces of research for the Autistic community, and to educate non-autistic people, demonstrates that Autistic people do not have deficits in social communication, but that there is a translation issue between Autistic and non-autistic people (known as the Double Empathy problem by Dr Damian Milton – an Autistic academic). This important piece of research by Dr Crompton shows that communication between Autistic people is stronger than between mixed neuro type groups – Autistic and non-autistic groups.

This has implications such as not placing the onus on Autistic people having a problem or deficit, and asking that non-autistic people work to learn the language and communication of Autistic people.

See here a short video explaining the study, and the video below of Jac den Houting discussing the double empathy problem, as well as the neurodiversity paradigm to replace the medical paradigm.