A hundred moments in autism - Reading Nuerotribes

Cherry

By Terrence Oblong

Mon, 23 Sep 2024
  • 539 reads
11 comments
 

The chaos of 190 newbie medical students descending to collect their theatre clogs cannot be described.  It’s freshers week meets large-scale Cinderella reenactment. 

 

I am one of the administrators of a clinical medicine course for just under 200 wannabe doctors.  I am responsible for organising the four-week induction course, which includes the collection the students’ theatre clogs, which they will need for their hospital placements starting the following week.    

 

There are a small number of breaks between lectures during which time the students are able to collect their clogs.  Although I have asked every student their shoe size in advance, it transpires that theatre-clog-size bears almost no relation to normal shoe size, so every student ends up trying on numerous clogs. I have a number of the admin staff to help, but it is full on for all of us.  Eventually the students leave for the next scheduled lecture and we have a break between clog collection.   

 

The rest of the staff who helped with the surge have returned to the office, while I stay, in case of stragglers.  

 

I have twenty minutes before clogstore opens, so I sit on the stage and read.  The book I have with me is Neurotribes. 

 

Neurotribes is the seminal book by Steve Silberman, which championed the idea that autistic people aren’t broken, just wired differently. The book, which won the Samuel Johnson Prize in 2015, changed the conversation around autism and popularised the idea that autistic people aren’t broken, just wired differently.  

 

Unlike previous books on autism, Neurotribes placed autistic people at the centre of the story and explored their viewpoint, not just their faults. His work examples such as environmental campaigner Greta Thurnberg to illustrate how an autist can achieve success not ‘in spite’ of their autism but because of it. 

 

I try not to be spotted, as this feels like a book for us, the autistic community, not for the medical professionals, not even medical trainees so new they haven’t got their clogs yet. 

Because the medical professionals have been a lot of trouble for our community, and frankly I want to keep my autism to myself thank you very much.   

Certificate 15
Biography
50 moments in autism
Autobiography

Comments

Submitted by Insertponceyfre... on

This is very interesting Terrence - have you been reading HarryC's pieces on autism lately? He did one just recently on a team he's in which gives lectures to medical students on autism.

 

Submitted by Terrence Oblong on

No I haven't, I will take a look

 

Submitted by HarryC on

Thank you for the heads-up! smiley

Submitted by Insertponceyfre... on

This is the one:

https://www.abctales.com/story/harryc/what-autism-brief-guide

 

Submitted by celticman on

I'll need to read neurotribes. 

 

Submitted by Terrence Oblong on

I wrote this shortly after the death of Steve Sibleman, at the age of just 66 - I followed him on Facebook and had read a post from him just the day before he died.

This is the New York Times Obituary:   https://www.nytimes.com/2024/09/05/science/steve-silberman-dead.html

 

Submitted by HarryC on

I only found out yesterday that Steve Silberman had died.  I was shocked as he was so young - and not much older than myself.  'Neurotribes' was the first book about autism I read after my diagnosis.  Great book.  I especially loved the first chapter on Henry Cavendish.  I think it was Silberman, too (as a gay man) who first likened attitudes to autism now to attitudes to homosexuality in the 1970s.

Interesting what you say about feeling this is a book for the autistic community, not medical professionals.  I have recommended it to the medical students at the uni in the workshops I run with them.  On that similar point, though, Katherine May has spoken about books on autism written by non-autistic people - especially the notorious 'To Siri With Love' by American author Judith Newman.  Here's a quote from Katherine's article:

'[Newman's] memoir of mothering an autistic son, To Siri with Love (2017), triggered waves of outrage from the autistic community, on account of a multitude of condescending and ill-informed remarks, from the author’s mockery of her son’s emergent sexuality to her breezy certainty that he’s a kind of empty vessel. At one point, she wonders aloud whether she should arrange for him to be sterilised. Newman’s response to the criticism was extremely telling. In a 2017 interview with an online magazine, she suggested that her stories were humorous, and that she assumed this meant that autistic people didn’t understand them. ‘This book wasn’t really written for an autistic audience,’ she said.

And yet the cover of To Siri with Love brims with praise for the author’s emotional intelligence, calling it ‘moving’, ‘touching’, ‘warm’ and ‘wise’, telling us that it ‘will make your heart brim, and then break it’. These are the words of a neurotypical society talking to itself, and praising its own ability to love the strange creature portrayed in this book. Here, we glimpse the space where discussions about autistic people take place: a closed shop, in which we are subjected to intrusive and patronising comment, while being explicitly excluded from the discourse ourselves.'

Submitted by Terrence Oblong on

Thanks for this Harry.  I saw a podcast recently where a medical professional was just looking round autistic's podcasts and dissing their reported experiences because they didn't fit with the psychologist's theories about autism.  

 

 

Submitted by HarryC on

Yes, I've experienced some of that.  When I was first referred to a psychiatrist to discuss the issue, he said to me 'You can't be autistic because you aren't flapping your hands and rocking in your chair.'  So again, it was using his 'understanding' based on what he'd read in the DSM.  This is what I keep bringing up to the students in the workshop: the DSM's descriptors are misleading, inaccurate... or just plain wrong!  On one occasion, one of them took it upon himself to read out a particular part of the DSM's description, then asked me how I responded to that.  I said, simply, "It's bollocks!"  A bit blunt - but then I did go on to explain why!

Katherine May's article is excellent.  Here's a link to it: https://aeon.co/essays/the-autistic-view-of-the-world-is-not-the-neurotypical-cliche

Submitted by Rhiannonw on

Learning how a 'neurotypical' person thinks can be useful though, and being understanding of their struggles to understand the autistic view and way of thinking.

Also, how to help those with severe autism. I very recently was with a family for the day who have a 6 year-old with such a condition. I was impressed with how calm they were as a family, and the warm contact that was there, even though still less than from their other child, and the way communication and speech was slowly emerging in the busy thoughts of the child with autism. Rhiannon

 

Submitted by HarryC on

Hi Rhiannon.  There's really only 'autism', which manifests differently in each individual - and, of course, those who have learning disabilities as well will struggle much more with the autism on top.  The 'low-functioning' and 'high-functioning' (i.e. 'mild' and 'severe') ideas of autism are now being challenged and overturned, and not before time.

I agree that it helps to learn about how neurotypicals think, too.  But the balance is hugely skewed, given how autistic people are still in quite a small minority in society.  About 1 in 68 now (the numbers are coming down as research and recognition advance).  So an autistic person in a situation where they are hugely outnumbered is still going to be regarded as 'wrong' or somehow 'dysfunctional'.  I've spent my life trying, and failing, to be 'neurotypical'.  It's been exhausting.  I think I do know how neurotypicals think.  But it still doesn't help when neurotypicals still refuse to accept that autism is a 'difference', not an 'impairment', 'disability,' 'dysfunction' and so on - just because it isn't the majority neurotype.  I don't like the 'neurotypical' vs 'neurodivergent' mindset - but I do understand why it's there.  As with any other societal grouping/segregation, the minority will always be the ones who have to work the hardest for acceptance and understanding.  Instead, we continue to get a lot of comments like 'Everyone's a bit autistic', or 'We all do that', which only tends to diminish, discredit or even trivialise the struggles that many of us have.  It doesn't surprise me in the least the the average life expectancy of an autistic person is 54, and the main cause of early death is suicide.