Thoughts from Autist living in a neurotypical world

A thoughtful blog about how one autistic person (E Price) functions in a neurotypical world. It’s a 15 min read about various aspects of their life and gives a tiny glimpse into the compromises needed.

It starts:

“I’m an Autistic person with a pretty put-together looking life. I always make rent. I have money socked away in savings and investments. I juggle several teaching jobs and do statistical and methodological consulting work. I sometimes find time to write. I have a social life. Except for the occasional noticeable chest crumbs, I present as clean and well-dressed. I manage my stress. I sleep. I eat.

I don’t think I strike the average person as disabled at all. I get work done on time. I show up to things I say I’ll show up to. I don’t show much distress in public. I rarely ask for help. Because psychological disorders are often viewed through a lens of impairment, people might call into question whether I am neuroatypical at all.


Viewing disabilities — and mental disorders — through a lens of impaired functioning is very flawed. The fact that I am functioning does not mean I’m not impaired, or that functioning is not hard. That I can survive, day by day, does not mean that I am thriving, or that my life is as easy as it is for a neurotypical person. And the aspects of my life that are impaired are rarely visible to an outside eye.


We often don’t see a person at their lowest moments — when they are crying and nonverbal, or engaging in self harm, or refusing to eat, or isolating from everyone they love. We can’t always tell if someone is struggling to make it through the work day, or if their sleep and exercise habits have been disrupted. And we don’t know, from the outside, what a person has been forced to sacrifice in order to live a seemingly “functional life”.

A lot of us “function” because we have to.

A lot of disabled or mentally ill people are able to work a job, pay rent, and get by through an elaborate system of compromise and sacrifice. We may have abandoned career paths that were too demanding of our mental energy, or lost relationships that were too socially or emotionally taxing. ...”



“Even with all the immense, unfair advantages that life has given me, life as a neuroatypical person is hard. There are many careers paths I could never successfully follow, and workplaces I could never inhabit. Frustratingly, this is not due to a lack of interest, motivation, or skill, but because I’m not good at existing in a milieu where small talk, meetings, ambient noise, and social politics are abundant.”

A thoughtful read check it out here from E Price.


Autism, David Mitchell Guide

"“So how autistic is your son, exactly?” “Well, his sensory processing is pretty cyan these days. Speech-wise, he’s light magenta. A nice canary yellow when it comes to motor control and memory functions, mind you. Thanks for asking.”"

I've referred to the David Mitchell piece (see here)  previous in looking at his translation of Naoki Higashida's book.   It's worth re-examining in more detail, if you haven't as it is insightful and genuine.

“If you’ve met one person with autism, you’ve met one person with autism.”

"So what are we still getting wrong about autism, and how do we get it right? My answers form a kind of wishlist. First up, is that we stop assuming a communicative impairment denotes a cognitive one. Let’s be wary of assuming that behind autism’s speechlessness lies nothing, or nothing to speak of. Instead, let’s assume that we’re dealing with a mind as keen as our own, and act accordingly. Talk to the person. Don’t worry if there’s no evidence he or she understands. Maybe there is evidence, but you’re not recognising it as such. If the person is there, never discuss them as if they’re not, or as if they’re only there like the coat stand is there. If they don’t notice this courtesy, no harm is done; but if they do, then someone who is often treated as a part-object, part-human, total nuisance gets to feel like a real, valid, card-carrying member of society."

Naoki Higashida. Autistic Voice.

Naoki Higashida’s examination of his autistic world, its hopes  and hazards; its joys and tears; its insights and confusions; Naoki sheds a profound and revelatory light on the autistic mind.

Required reading for autism workers and those interested in the area. Everyone really. These two books The Reason I Jump (which I blog about here) and Fall Down 7 Times Get Up 8 by Naoki Higashida trans David Mitchell & Keiko Yoshida.

"“Why can’t I speak? How come I’m the only one who can’t do it? How I used to agonise over these questions as I watched the other kids doing all kinds of things effortlessly that I’d never be able to manage, not even if I spent my entire life trying.

Every time, I just wanted to break down and cry. I stuck with my regular primary school until fifth grade –age eleven –but it had become so physically and mentally exhausting by that point that I transferred to a school for children with special needs.

My feelings about the move were ambivalent, and remain so. In one sense, it felt like I was running away and, once there, it took me a whole four years before I found a path to my authentic self. On the other hand, until then I had never observed a class in a special needs context and I was surprised by the big differences between classes there and the education I had been used to. While I was conflicted about the ‘special needs’ label, the kindness I encountered from both teachers and students –unthinkable at my previous school –took the edge off my unhappiness. There, I was no longer a ‘problem case’ but just a regular student. Some students were more capable than me while others had more severe challenges, and for the first time I realised how many neuro-atypical children existed in the world.

The school for children with special needs afforded me the freedom to be what I was, but it became less a place to receive an education and more a place to think about my autism. Time passed without my really doing a great deal. The classes were, in theory, tailored to each student’s disability profile, but in practice the teachers had enough on their hands just handling the students’ routine requirements. Some students were ‘long termers’ who had been there since first grade, while others, like me, had transferred in from regular schools because it was thought they were better suited to a school designed for special needs.

Looking back, most of my classmates seemed to enjoy their days at school without any complaints, but I still wonder if they all believed that this was the place they truly belonged? That said, my new school was a place where neuroatypical students were at least free from bullying or ignorant tellings-off. The school taught me the importance of being able to accept assistance and of being respected and valued by others.

I learned that we all have a right to live as a human being should live, and that happiness is attainable whether we have a disability or not. I saw a future path leading first to a high school for students with special needs (to which my new school was attached) and then to a work-centre for people with disabilities. I resolved to increase the range of things I could do without assistance, to work at becoming as independent as possible and, to the best of my ability, to avoid inconveniencing others. I thought that any aspirations outside this future were unrealistic because I was now where I belonged. I consigned any memories of my previous primary school to ancient history.”

There’s more from the BBC on it being book of the week here.  There’s recent (July 2017) article from David Mitchell in the Guardian talkingabout autism and his wish list.

And I have written previously about Naoki’s first published book here.

Jonathan Meth. A conversation, one.

Elegant, flowing, beautiful hands. Chatting with Jonathan Meth, I was struck by how eloquent his hands were.

 

Social decorum crimped me and I felt I couldn’t interject to say - wow your hands wonderfully mesmerize me. Social media strips decorum, so I can say that now.

 

My writing threads go back to when Jonathan ran writernet which harks back almost 20 years ago now. Now, I’m stepping back into a writing practice or perhaps a playwright as a multi-disciplinary arts-investing person, a some time mingler - which I’m told is a form of covening. It’s amazing to re-connect and hear how artists’ work have developed.

 

Jonathan has kept an international network of artists through Fence, which seems to me an evolution from the dramaturgical work of writernet (I will split the post and write about Fence in another section). He has also developed a practice in disability arts - and our shared interest in autism crosses over here. There’s a lot to Jonathan’s practice.

 

Across time and space, we end up on a warm New York autumn evening drinking a bar tender’s choice of drink, 10 over years since we last met.

 

The disability practice is described in this 2015 Guardian article and on his own site here. What I took away is that there is a strong disability arts practice in various countries, often forging on with limited support, but creating a long history or astonishing art. Three of them are partnered in Crossing the Line (not to be confused with the project that Gideon Lester and others are involved with): Crossing The Line (EU) is a project of the co-operative partnership of 3 European theatre companies: all leaders in the field of working with learning disabled artists. The partners are Moomsteatern in Malmo, Sweden; Compagnie de L’Oiseau Mouche in Roubaix, France and Mind The Gap in Bradford, UK. Jonathan is project dramaturg, and is hoping to expand the partnership to many more countries.

We also intersect on Ambitious about Autism. This is an ABA led group in the UK on ASD special education needs; but Ambitious acknowledges that the tent is larger than ABA and so pushes forward across a range of ASD advocacy; as child-centric and child-led practise informs much of good SEN (and typical) practice today, whatever techniques you find that work (and research is still relatively poor).

 

Drawing this part together, it was apparent to me that Jonathan speaks many languages. The language of art in its many dialects, the language of SEN, the language of policy makers and funders.

 

It dawned on me, I speak several of these languages too, and that we need more of us in today’s word. More than ever.

 

Jonathan spoke of Isaiah Berlin’s Fox (after Greek poet Archilochus) who ‘know many little things’.  As Jonathan writes: “They react to challenge by drawing on a pattern of general, pragmatic understanding, often making mistakes but seldom committing themselves to a potentially catastrophic grand strategy.” As opposed to the hedgehog, which knows one big thing.   It reminded me of this Nassim Taleb conversation with philosopher Constantine Sandis  -  Taleb argues a cousin piece of thinking:

 

“I do not consider myself a hedgehog, but a fox: I warn against focusing (‘anchoring’) on a single possible rare event. Rather, be prepared for the fact that the next large surprise, technological or historical, will not resemble what you have in mind (big surprises are what some people call ‘unknown unknowns’). In other words, learn to be abstract, and think in second order effects rather than being anecdotal – which I show to be against human nature. And crucially, rare events in Extremistan are more consequential by their very nature: the once-every-hundred-year flood is more damaging than the 10 year one, and less frequent.”

 

Being open minded, being open to possibilities when they happen, intertwining chance - taking those chances  - those challenges are absorbing them to make you stronger (anti-fragile, even more than resilient)

 

Looping back to Spike, that chimes with some of what I hope for him, that we can expose him to enough small and varied challenges and opportunities that he find enough to think, and be, and to find purpose. It’s hard for Spike to do that within an institution. We will find a way.

 

This last few days in New York has felt a little like that - throwing out the the threads - listening - thinking - being - meeting: from the chance meetings (triggered by the Empty Space), the semi-chance meetings like Jonathan; the near misses (Gideon, I’m still hoping); the re-connections;

Mixed in with the latest in pharmaceutical, medical technology and consumer genetic thinking.

 

And, I am thankful for that. Part two of conversation here.

 

Time for more?  Here’s a short post on 5 things autism has taught me.  Here is   JK Rowling on the benefits of failure.