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.

[stealtheatingtunnocks]

Have you got any advice for AS people about how to deal with their bemusing NT partners?

Every book about AS/NT couples, apart from the Field Guide to Earthlings: An autistic/Asperger view of neurotypical behavior is focussed on the NT person accommodating the AS person's needs - a marriage without reciprocation soon reduces the NT partner to a carers role and, personally speaking, the novelty of that wore off some time ago.

There's a desperate need in my house for a "Guide To Your NT Partner", which would help people like my DH learn skills like "how to remember birthdays", "how to hug without accidentally strangling your beloved", and "intimacy erodes unless you maintain it by doing x, y or z".

So, could you go and write one, please? Pretty please?

Oh, and, thanks for putting the Earthlings book on your website, I'd never have found it otherwise, and, in all honesty, it saved my marriage. I'd prefer your version, though.

[fuzzpig]

Brilliant!

I was diagnosed with ASC last week. I've hated myself for a long time for struggling with things that most people seem to take in their stride, and I am really trying now to see my difference in a positive light.

I'm waiting for the book at the library but there's a queue! :o

I'm hopefully going to be giving a talk next year about the benefits of thinking differently, and I'd like to talk about people on the spectrum who have changed the world!

So my question (which I guess may be answered in the book, so apologies if so as I've not read it yet!) is, when we talk about people throughout history with autism, how 'safe' is it to speculate over whether a particular person like Mozart or Tesla actually had autism when the diagnosis would not have been made at that time?

I don't mean that in an accusatory way of course :o but rather that from my own perspective, I felt very awkward about describing myself as having an ASC when I didn't have it diagnosed officially - even though I really knew I had, I just felt I couldn't say it for sure until a specialist had confirmed it.

Thanks :) and thanks also for writing this book - I am very excited to read it and I really think it will help me come to terms with my diagnosis.

[MarianneSolong]

I'd accept that diversity enriches the human race, and that people with autism have particular gifts.

Do you think that parents who have autism have particular gifts that they can pass on to their children, in terms of the way they bring them up?

I am the most 'neuro-typical' of three adult children. It seems almost certain that my father had high-functioning autism and my mother displays many autistic traits. For me there seem to be some obvious negatives. My parents found it very hard to understand me and communicate with me, to show physical and verbal warmth. To imagine what it might be like to be in my shoes.

Where are the positives, would you say?

[PhilPhilConnors]

Just marking my place for now, I've recently read this book and loved it.
I'll think of a question and add it later.

[MrsMolesworth]

My AS son has needed lots of help with socialisation. I am really bloody tired of him having to open books with the word 'disorder' plastered all over the front of them. He is different from the majority of his peers, but there is really nothing wrong with him. It's hard to build his confidence about this when he struggles to take this sort of thing in his stride. Any advice?

[Devilishpyjamas]

How much experience do you have with severe autism (by which I mean minimally/non verbal together with learning disabilities)?

[Devilishpyjamas]

And do you think we should be talking about autism or autisms?

[shazzarooney99]

What causes a child with autism to be violent? and whats the best way to deal with it?

[OneMoreForExtra]

My family, and DH's family, both have people close to us with pronounced autistic traits. I suspect that my father and 2 of his siblings, at least 4 of my cousins, and DH's mother and brother, would all be diagnosed with Aspergers if they were to consult a doctor about it. I have only discussed this with my mother, who after reading around the subject, agrees. Several of the people concerned are in their 70s and have probably never heard of Aspergers. Whether they would be diagnosed or not, the undeniable traits have had a big impact on my and DH's upbringing and ability to form relationships, and on both our parents marriages, and I think it's no coincidence that we ended up together. So far I've taken the view that it might be too painful and awkward to raise the possibility of ASD with any of my relations, who might feel attacked and defensive. I have two questions though:

Would you see any advantage in bringing up the subject with any of our relations?

Do you have any advice for the NT adult children of undiagnosed ASD parents in terms of re-wiring themselves for healthy partnerships?

[MerdeAlor]

I loved your book and am proud that the idea neurodiversity is getting the attention it deserves. When we challenge our perception of normal and welcome diversity as normal, society opens it eyes to new possibilities. It's so exciting.
I hope and beleive that my son, now 12 and with autism will grow up in a neurodiverse, accepting world.
I see that health care professionals and teachers in particular now need educating in neurodiversity. How would you recommend that happens?

[waitingforgodot]

I've not yet read the book (on my Christmas list). I want to ask same question as devilishpyjamas re severe autism

[Gumblebee]

Hi,

There appears to be significant comorbidity of mental illness in ASCs - what part do you think autistic people's experiences of lack of acceptance and history of being maltreated and misdiagnosed plays in this, and do you feel that with greater acceptance of neurodiverse people and accommodations for our differences, mental health in autistic people will improve? What more do you think mental health services can or should do to meet the needs of autistic people with mental health problems? The NHS appears to be ill-equipped to diagnose ASCs in the mentally ill or mental illness in ASCs, or to provide adequate treatment for autistic people with mental illness.

[AGnu]

My copy arrived this morning. I should have finished it before the webchat starts even with quite a busy weekend planned - the ability to hyper-focus is one of my many ASD traits! I'll probably be back with more questions...

One thing I would like to know... Is there any way to make the diagnostic process easier? I mentioned it to my GP ages ago & she told me I'd have to book an extra long appointment to come & "state [my] case" for a referral & acted like there was no point really anyway because the waiting list is a year long because of "so many people like me thinking they have it." I wasn't aware that ASD was the sort of thing to resolve itself in a few months! I'm the sort of person who has to be at death's door before I'll waste the GP's time so the thought of booking a double-length appt when she may not even refer me is way too much for my brain to handle. I'm coping with life, mostly... If coping includes not working, not leaving the house most days, only having 3/4 places I can go without needing DH to accompany me...! Would be nice to at least be able to explain to people why I feel unable to do things socially, without having to come up with some excuse. Would the GP be likely to accept a letter explaining things so I don't get tongue-tied & then maybe DH could talk to her for me? I get so anxious about not being accepted for who I really am that I can't bear the thought of the GP not believing me.

We've started the referral process with our 4yo so I'm hoping we can get a diagnosis for him & then I might be better placed to insist on a referral for me too!

[Almahart]

So pleased to hear this. I want to know about whether you think there are 'autisms' too and what you know about whether the debate on this is becoming more developed.

[Devilishpyjamas]

I think a question from the other thread was why wouldn't someone severely affected by their autism (whatever their functioning level) seek or desire a cure?

My son's autism is currently eating up his life. I suspect the reason it's so bad at the moment is to do with biology (& potentially treatable). I don't care how autistic he is, but I do care when his autism imprisons him & prevents him from being able to access his favourite activities & is likely to lead to him being removed from living in the family home.

Currently the only treatment on offer is strong brain rotting drugs (he's on risperidone & lorazepam - I don't like either - he had no drugs until he was 15 & a half & would have been removed from the family home without them) - why wouldn't we want more research? I'd do anything for him to have his life back. To be clear I am talking about his severely autistic life of 2 years ago where he could access activities & the world - despite his severe autism. That's all gone now - and I would support any research that aimed to understand why & treat. Why is that such a bad idea? Why wouldn't we want the chance of choices other than anti-psychotics & other strong side-effect riddled drugs? Why wouldn't we want something that might actually work?

[MummySparkle]

I second that it would be very useful for a book explaining to people with ASC how to deal with a NT partner. How to show them affection, in particular.

And also autism and Borderline Personality Disorder in girls. Traditionally autism has a higher diagnosis rate in boys and BPD is a predominantly female condition. However it seems to me that there are similarities between the two conditions. In particular the struggles with processing emotions and with maintaining relationships. I think that the two might be Being misdiagnosed and confused with each other. What are your thoughts on this?

I have a BPD diagnosis, however I am having an autism assessment on Monday. I have always thought that autism would make more sense

[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 :)

[PoppyAmex]

I second waitingforgodot and would be very interested in seeing answer to devilishpyjamas' question, regarding severe Autism.

[MrsMolesworth]

Do you know much about autism and fugue states? DS has never had the autistic tantrums and meltdowns that Devilish describes, although every single other AS child in our AS group has. Instead, he does into what the doctor called fugue states - deep inside himself, glassy eyed and very difficult to pull out to speak to him or get him to do anything. It feel quite mean to pull him out of them. He does this far less in his teens than he did at his primary school, but it does still happen when he's upset or stressed.

[Devilishpyjamas]

Mrsmolesworth - DS does that as well (had a phone call from school this week 'ds1 has been hitting his head, is glassy eyed & unresponsive - can we give pain killers?'. His retreat from the world started with a few months of being utterly withdrawn (at home lying staring at the walks for hours) & to be fair the brain rotter risperidone kicked him out of that immediately - we had our boy back. For 2 weeks. Then it stopped working & we slipped into being very unstable & frankly dangerous which has been the case for 8 or 9 months or whatever now.

I personally think the withdrawal & the explosions are all loss of control & anxiety driven, - ds1 often enters that glassy state after some sort of explosion, but he's not really with us & is not in control in either state.

The other thing to look at is catatonia. When ds1 had extended periods of withdrawal he was also catatonic in other ways (couldn't get out of the car - would take 40 mins, stuck at doorways, couldn't cross lines etc) - lorna wing (& a few others) have written about catatonia in autism (& that's why he was prescribed lorazepam although I'm not convinced he is catatonic now tbh & if he is he shouldn't be on risperidone but every attempt at withdrawal has had to be abandoned).

Sorry I know we're not meant to discuss on these sorts of threads but feel free to pm me.

My son definitely does not enjoy these states though - so it might be different in your son's case.

[Essaye]

Thank you for your time. My questions could be follow ups to Devilishpyjamas and Almhart about 'autisms' or Gumblebee and MerdeAlor about the future care of autistic people and their comorbid conditions. I see great hope in the children my autistic sons interact with. For example the care eldest son's classmates show him (rainbowsaretoobeautiful.blogspot.com/2015/11/the-hope-i-see-in-kind-acts-of-children.html) and the acceptance our younger son experiences at the playground (rainbowsaretoobeautiful.blogspot.com/2015/10/a-ray-of-sunshine.html). Our younger son is more severely affected by his autism, he is more obviously autistic particularly as he is non verbal. Our oldest son struggles more with his comorbid ADHD and anxiety, but could be mistaken as neurotypical to the untrained eye. I am as I say hopeful for their futures in our ever neuro diverse world (1 in 45?) but do you think in the future that there will still be greater acceptance of the autistic people who appear more 'normal' than those who aren't (and effectively giving some credit to Dr Hans Aspergers attempt to protect kids with autism)? And either way why do you think this or what evidence is there to back this opinion?

Many thanks.

[onlyoneboot]

I have 3 children with AS and while my son is happily himself and well supported at school (for now) my daughters both effectively masked then fell apart, unable to cope at high school. I now homeschool them with funding for online study from our LEA.

My question is what could/should schools be doing to better support smart, funny and creative girls like mine who are currently falling through the net leaving parents to repair the damage the school environment has done?

Thanks!

[sickofsocalledexperts]

It is great that your book is moving the autism debate higher up onto the agenda, and busting stereotypes. But two things I would ask: why does only a tiny part of your book cover the more severe end of the spectrum (with severe learning disability on top, like my beautiful boy) and also, why does the book cover only the historical aspect of ABA, and not the contemporary ABA which has been so crucial to teaching my son skills to improve his quality of life.

[Themodernuriahheep]

Two questions.

My partner is ASC. He is anxious about failure the whole time. Do ADs help?

How does one help the NT children if ASC parents to have a good relationship with them, and vice versa?