Webchat with Steve Silberman, author of Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently - Monday 16 November, 9-10pm

[RachelMumsnet]

Following the enthusiastic response to this guest blog, we’ve invited Steve Silberman to join us for a webchat on Monday, 16 November between 9 and 10pm.

His book Neurotribes: The legacy of autism and how to think smarter about people who think differently is a New York Times bestseller, and has just won the 2015 Samuel Johnson Prize for non-fiction. In the book he unearths the secret history of autism and finds surprising answers to the crucial question of why the number of diagnoses has soared in recent years. One review says: “To read NeuroTribes is to realize how much autistic people have enriched the scope of human knowledge and diversity, and how impoverished the world would be without them”.

Find out more about the book on Steve Silberman’s website and come and put your questions to Steve on Monday evening, 9pm.

Really thoughtful and thought-provoking posts Mr Silberman. I understand Puddock asking about the disclosure of an AS diagnosis. At recent meeting with teaching staff at my dc middle school, dh. and I were asked to consider the implications for our son of we pursued a diagnosis for him. As it is thought he is a bright child and has potential to do well at school and a diagnosis of AS may impede him and limit his options as an adult. This was from SEN support staff.

I agree the People with AS should be in control when it comes to disclosure I he everyone can one day feel 'safe' being open.

@PhilPhilConnors

I'd like to know your opinion about masking. My 10 yr old manages to hold everything in during a school day, so his teachers think we are making things up. Once home he is always angry, and needs help to calm down, often we can't and he has violent meltdowns. I know he's not the only child who does this, I'm told it's fairly common amongst autistic people. There are plenty of documents about this (on the NAS website, Dr Luke Beardon's blog for eg), but so many professionals (including ASD diagnostic teams, support workers and teachers) who simply do not believe it happens. What can parents of maskers do to help their children in school, when no-one is willing to support them?

Thank you. Loved the book :)

Thanks, PhilPhilConnors, this is a hugely important point. In America, we call masking "passing," and YES, it really takes a lot out of autistic people -- much more than most NTs realize. My autistic friends hate it when people tell them, meaning to compliment them, "You're autistic?! I'd never know it! You seem perfectly normal to me!" Gentle readers, please don't ever say that to an autistic person :)

I think masking or passing is an even bigger problem for girls and women. Rudy Simone's book "Aspergirls" contains many stories of the emotional cost of hiding one's autism. It takes cognitive resources away from more important tasks. Society must learn to recognize that even so-called high-functioning people (a term I generally avoid because it underestimates their challenges) have to struggle to get by in a world without adequate accommodations.

Unfortunately our hour is up, but what an interesting and insightful webchat this has been. Thank you so much Steve for answering so many questions so thoroughly, and congratulations for winning the Samuel Johnson Prize with NeuroTribes. Thanks to everyone too for joining us and for your excellent questions.

You can read Steve Silberman's guest post "We need to stop looking for a 'cause' for autism" here

In the course of your research for NeuroTribes, have you come across the Son-Rise program for autism? Your take?

@redalertalpha

How fluid do you think differing diagnoses are such as Aspergers/high functioning autism, autism & ADHD. It still seems in the UK from our experience, paediatricians use the old style questionnaire to determine diagnosis which very much seems to focus on the traits of Autism such as being non-verbal, low social interactions, eating habits etc rather than the complexities of rigid behaviour & sensory seeking behaviour. Do you think this should change?

Thanks, redalertalpha. I think one of the great myths of autism is that someone's "position" on the spectrum is not fluid. It can even seem to change day to day! ("Some days are more autistic than others," Carol Greenburg the autistic mother of an autistic boy once told me).

The diagnostic subcategories are useful in some ways, but they obscure a lot of human experience. Where they help an autistic person and their family access needed services, I'm in favor of them. But yes, they're an artificial construct in some ways, "carving Nature at the joints" as they say.

That seems a very compassionate way of looking at things Steve - "have to struggle to get by in a world without adequate accommodations"
Very true I think, for almost all SN and neurodiversity, maybe difference of all kinds?

Thank you so much for all the great questions! I feel rather badly that I got to answer only a few of them. But I really, really appreciate such a warm welcome from the Mumsnet community. Best wishes to you all.

A question from a friend:

'Are you aware of Elaine N. Aron's book 'The Highly Sensitive Person'; and, if so, might you see such a type as borderline ASD/NT? Neither 'autism' nor 'Asperger's' feature in the book's index, but the blurb on the back cover describes the 'HSP'type as 'born with a heightened sensitivity (e.g. overwhelmed by bright lights and noise) ... often gifted with great intelligence, intuition and imagination, but there are drawbacks. Frequently they come across as aloof, shy or moody and suffer from low self-esteem because they find it hard to express themselves in a society dominated by excess and stress.'

There seems currently to be a trend on the part of 'therapists' of a Jungian or New Age persuasion to identify new categories of person according to clusters of behavioural characteristics (e.g. 'Indigo Children' with their unusually adult-like behaviour). - Given the variety and range of intensity of trait manifestation, do you think that, in these so-called new types which have been identified, we might actually be looking at various groups of people on the autistic spectrum?

Sorry, I'll start that again: My point is: because these contemporary therapists are not trained in recognising autistic traits in their specificity, variety and range of intensity, may they not simply be observing ASD types without knowing it? - Or, may they - like Leo Kanner - in their keenness to take credit for their 'discovery', be turning a blind eye to the similarity between their alleged new 'natural entities' and those people who are on a previously recognised and researched neuro-cerebral spectrum? '

I don't suppose it will get answered but never mind...

Thank you for answering my question. I'll follow up on the books you recommended. Hope your book does well (I've asked for it for Christmas.)

Thank you Steve for answering my question! That's a very helpful answer :)

OJ guess your question was too late :( but I have read 2 of Aron's books, (H.S. Person and H.S. Child) and the same thought had certainly occurred to me. I have just been diagnosed with Asperger's but found it very useful nonetheless - I'd already realised I was probably on the spectrum by then, but it was good to read about my issues being actually quite normal for a lot of people (something which was echoed in my assessment - the specialist said "for somebody on the autistic spectrum, you're actually totally normal!" :o).

I read the one about children because of my DD - I think it describes her well, and even the specialist who diagnosed me (but had lots of information about my children as part of the assessment) said that it sounds like she may well be on the spectrum herself but is 'borderline' and may end up getting a diagnosis as an adult, like I have.

Hi, I wondered if you had any thoughts or advice on PDA (Pathological Demand Avoidance)? We are only just beginning our journey but this seems to describe our 7 year old DD.

PhilPhilConnors - masking appears to be one of the features of this type of autism and although we haven't yet sought a diagnosis I know we will find it difficult as our daughter also 'saves it all up for home' and appears absolutely fine at school or in company. Deep breath.

Thanks for the answer, and for the further reading suggestions. Will add them to my list.

And, thanks for highlighting autism in all it's shapes and forms.