‘I Will Die on This Hill’ By Meghan Ashburn (Not An Autism Mom) & Jules Edwards (Autistic, Typing)

Another Literally Ausome Book Review

Anyway….

We have shared insights, advice, recommendations, opinions, ideas each time our backs have been up against the wall…. Could be walls in our houses, school walls, doctors hall walls & even our therapist clinic walls.

We also share warts & all even when our backs haven’t been up against anything. We haven’t had our backs up, wanted to back out, needed to back off or reassess & go literally just go back to the drawing board or to bed!

For nearly three years I’ve been educating myself, my friends, my family members & anyone who will listen (which is how Literally Ausome started) about Neurodiversity as a whole, at times focussing on Autism as I feel it’s the one condition that is most misunderstood, misrepresented & been the subject of much misinformation over the years. Moreso with the DSM-5’s removal of Asperger’s as a diagnoisable condition, leaving Autism as the overriding term, the whole ‘but they don’t look Autistic’ spawned & kept bloody multiplying.

So this is the topic that kept being brought up.

There has been this underlying tension between the likes of us ‘mums’ & #actuallyautistic adults in the community…. which tends to be ‘online, nevertheless, a community. It goes without saying, yet I’m being explicit here, I respect & value the Autistic community beyond words. Literally, if you will.

Sadly though, I’ve not always been a welcomed member of Autistic-led social media groups & organisations; because I am not Autistic. Neurodivergent, yes. Autistic, no.

I’ve tried my hardest to remain respectful, open-minded & to *really* listen to Autistic voices & their lived experience(s), because, well mainly because they’re human beings with every right to be heard & also because in order for me to raise my children in a Neuro-affirming way, the best way I can do this is by engaging with Autistic-led organisations & groups. There’s no way, ever, anywhere, at all, that I will ever know how it feels to be Autistic, because I am not. I can be understanding, compassionate & all the other words meaning this, but will still never truly know how it feels.

Oh, & a reminder, just like every person is different, so is every Autistic person. Can you believe this has needed to be literally spalled out????

Despite my good intentions, there’s always been an undercurrent of ‘unwelcome’ or ‘being schooled’ for using out-dated terminology & attacked over my words &/or inquiry & as a consequence, it’s not just that I’ve not been provided the information I so desperately wanted/needed at the time, I’ve felt unworthy of being included in the group at all. It’s like I’m a spectator who’s eagerly waiting to have something thrown my way, anything…. & I’m told by the players & everyone else at the arena to sit down, shut up & have a really good, hard think about who I’m really rooting for. (I know the answer….. I’m literally rooting for me. Point made & taken).

I’d already rejected the behaviour modification experts, models & groups, ABA related crap & never even considered the bullshit scientific research that spewed forth many versions of ‘cures’ & medicalised definitions of Autism.

At times I was portrayed or referred to as an ‘Autism mum/mom’ which I resented so much because I wasn’t one! I’d rejected those groups & agendas & their puzzles pieces before I’d even considered questioning my actual ‘theraputic experts’.

I wouldn’t have felt comfortable, in groups where Autistic children also had co-occurring intellectual disabilities. The discussions & topics in the group would not have been relevant to me, not to mention fucking insulting & insensitive to the group members if I bitched & complained about, for ONE example, the mainstream school system. ‘Yeah, so our kids are segregated. Piss off’.

My friends & I often commented, sure, complained too, that we simply didn’t fit anywhere.

Here we were educating everyone we knew, including parents of intellectually disabled Autistic children why we don’t use functioning levels anymore, while at the same time being publicly shamed in Autistic-led groups for asking a question using outdated terminology (in our defense it was provided to us by our therapists who were the ‘experts’ in our lives at the time) or because we asked a question riddled with PTSD triggers & trauma because we didn’t know yet what we didn’t know.

Our children’s diagnosis’s came with a gift with purchase of isolation, overwhelm & loneliness. And just when we think we’ve found our people, we get very quickly shoved back into a space where we feel useless & scared that we’re not going to adequately, & most importantly appropriately, support our kids.

And in comes our mates resentment & anger which does nothing for anyone, ever.

But still, my friends & I persisted.

We relied on each other, we shared, we cared, we tried & we advocated. We never gave up because that was never an option. (That’s not to say we never wanted to). At times it felt like, ‘near enough is good enough’ or ‘well, we may as well try cos we just don’t know’. But realistically it was more a case of the blind leading the fucking blind!

And we knew that we didn’t need to be. It was frustrating & often created this mental loop of confusion. And that shit takes up spoons we really need & spoons we often don’t have.

So, enough about me & my friends, because along came Meghan Ashburn & Jules Edwards. I’d like to call them my friends, but they have no idea who I am & that’s not really indicative of true friendship.

Anyway Meghan & Jules wrote a book called, ‘I Will Die on This Hill; Autistic Adults, Autism Parents, and the Children Who Deserve a Better World’.

From page one, I finally felt at home.

There was finally a place, that resonated with me beyond, well the paper it was printed on.

Someone(s) – cos it was more than one – read my thoughts & feelings & wrote a book.

There was no name calling, no public shaming & both ‘sides’ of the hill were given reminders, suggestions, home-truths & rules on how to live by. Not literal rules to live by but guidelines….. or maybe just painted road lines assisiing us to stay in our respective lanes, suggestions & recommendations on how to merge into oncoming traffic & assistance on how to exit safely. What was most incredible is that we all agreed that hook-turns are shit….

I highlighted this book as I did Heido Mavir’s ‘Your Child is Not Broken’, (@Education Otherwise Than At School – EOTAS Matters supporting SEN Families) but Meghan & Jules’s book has more pages so I used more pens. (Before you think this is litmus test for which book I loved more, don’t. Just stop those dumb thoughts. I love them BOTH as they tap into different areas of emotions & feelings. They BOTH had me at hello).

For anyone that’s ever felt the way I have, for not quite fitting into a place where we’ve been sent to or been suggested to us, READ THIS BOOK. Your brain & your heart will thank you.

In the meantime, I’m just going to thank Meghan & Jules for having the strength & courage to write this book & recommend everyone reading this review & felt even 1% of what I ever felt, to buy yourself a copy, get comfy, get your highlighters out & feel as though you’ve come home.

Aussies, grab your copy from here:https://www.amazon.com.au/Will-Die-This-Hill-Autistic/dp/1839971681/ref=sr_1_1?keywords=i+will+die+on+this+hill&qid=1676258602&sprefix=i+will+die%2Caps%2C222&sr=8-1

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