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.

Hello

I have yet to read the book (I plan to - it is on my christmas list!). I am NT (but dyspraxic I think) my mother is very likely AS and it explains alot about her struggles with depression and life in general. My ds and dd1 are both AS - though ds is not officially diagnosed we all know he is on the spectrum. His sister is struggling with going to school and has to be coaxed/ coerced to go in every morning - teachers are keen to reassure me she is 'happy' in school but it is hard to accept that when she is so unhappy about going. The male dominated media portrayal of AS is unhelpful in this I think. DD is not a maths savant or science geek though her language skills and reading/ creative writing is precocious.

DS is more like the stereotype and I am really starting to believe he gets more support at school (despite the fact he has no official diagnosis) because his struggles are better understood while dd is left floundering more, the way she communicates her anxiety is more subtle and depends on the audience. So I hope that the better understanding of AS in general - which books like "Neurotribes" promise - will in time provide the acceptance that there is a range of characteristics and a range of interventions needed for each autistic individual.

Is the gender bias examined in your book specifically?

Book is on my library list!

My son was diagnosed with Asperger Syndrome at just 5, he is now 7 and we have not yet talked to him about his diagnosis. He has some interventions at school to support him with interaction but they are not exclusively for children with diagnoses (although of course school are aware). He is sociable, anxious, and empathetic - not many people's stereotype of an autistic child, although those with more experience do recognize it.

He is of an age and a level of understanding now that I think it would be good to introduce him to the idea of autism, what it might mean for him, what prejudices people with autism might encounter, how to counter that, and so on. Can you recommend any strategies or resources to introduce the idea of being autistic to a child, and any dos and don'ts?

Also, what do you think about whether children and adults with less-obvious autism should disclose their diagnosis widely? While he's young and the decision is more mine, I have tended towards caution because of my own concerns that he might miss out or being prejudged by adults he encounters whose understanding of ASC may not be very strong, but when he's older I would want the decision to be his. I can certainly see the benefits of being out and proud, both to the individual and to people with autism as a whole.

This thread has already had an huge impact on me with the mention of autistic catatonia, which was completely new to me so thank you devilishpyjamas. Having watched my teenage son with Asperger's become increasingly disabled over the last year/18months, I have now discovered that his deterioration absolutely fits the picture of catatonia-like deterioration. I can't say it's a relief, but there is something in knowing it's a "thing" at least.

My question is that there seems to be disagreement over the relevance/effectiveness of medication for catatonia-like deterioration as opposed to full blown catatonic stupor? This mightn't really be the right place to ask this but any thoughts gratefully received as it is hard to feel positive about striving for neurodiversity when my DS can't walk through a doorway without freezing and currently takes anything up to an hour to put on a sock. It doesn't leave much time/mental energy for engaging with life.

Thanks,
synatlf

I think neuro diversity is fascinating and am very glad to see a gradually increasing acceptance and understanding around these differences.

I'm interested in how AS might relate to other neuro diversity such as attention deficit (AD(H)D) and dyslexia

As usual it's personal too as I think my DSis may have undiagnosed Aspergers - growing up it was always put down to being shy but I think she has challenges with social skills that go deeper than this. For myself I wonder about attention deficit - one main challenge is concentration and also motivation is an issue. My DM hasn't been that emotionally available but this could be due to issues with her own parents as well as just how things were for the generation growing up in war-time. Additionally we think DD may have dyslexia - but she's doing well at 16 and I feel she is a creative thinker.
Anyway interesting to think about how we all think and behave slightly differently.

Am probably most concerned with how I can support my DSis.

Do you think it can be beneficial to seek a diagnosis for Aspergers/AS in mid-life?

Synatlf (with apologies for it being the wrong thread) - but risperidone 'unstuck' my son (although it's not meant to - it can potentially make catatonia worse & imo it's a horrible horrible drug - they're only meant to prescribe it in the UK if there's a risk of serious injury). The drug of choice for catatonia is lorazepam. My son is on a small daily dose - the most useful effect I've noticed is it has controlled the severe nausea he was getting from risperidone - this is a major benefit for him btw. It also helps him sleep. He wasn't hugely catatonic when he was started on it though. Or he may not be catatonic in the true sense of the word. There are some facebook autism/catatonia groups btw.

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?

Hello Steve,

My husband was diagnosed with Asperger's Syndrome three years ago at the age of 51. It came as a relief to us both. An explanation for so much and as a couple, we embrace that neurodiversity and the strengths and challenges that come with it.

However, despite being truly gifted within his area of work, my husband will not 'out' himself as having this diagnosis.

What, do you believe, will have to change within families, community and society, in order for my husband to have the confidence - to be proud even, to say "My name is Stephen and I have Asperger's Syndrome!"? I long for him to have that freedom.

Thank you!

Hello everyone, thanks for joining us this evening and a very warm welcome to Steve Silberman. Over to you...

Hi, I read your book and loved it (and recently wrote you fanmail, too). One thing I wonder: what's your opinion on medicating autistic children? My kid is awesome, but he also struggles so much with out-of-control anger and frustration, and I am probably quicker than most parents would be to medicate him. He has been on moderate doses of several different meds since he was 5, including Risperdal. It's difficult for me to read the opinions of people who think that medications turn kids into "zombies" or that parents who medicate just want docile, obedient kids. All I want is for my son to be happy, and when he's screaming and breaking things, he isn't happy, either. Are psychiatric medications a good solution for autistic kids with anger problems? Are there other therapies or supports which might be more helpful?

@UrsulaMumsnet

Hello everyone, thanks for joining us this evening and a very warm welcome to Steve Silberman. Over to you...

Hello, everyone -- thanks for joining us! I'm very honored to talk with the Mumsnet community. I should say up front that my book is primarily a history of autism, focussing in particular on how views of people on the spectrum have changed radically over the decades. (Indeed, there was no recognition of the spectrum nature of autism by diagnostic guides like the DSM until the 1980s and 1990s.) I am not a clinician or medical professional and am not qualified to answer certain questions; I apologize in advance if I decline to answer a question you've asked. But here we go!

I've got your book waiting for me at home when I get there at the end if the week. Can't wait.

What's the most important thing you personally have learned from your voyage to the spectrum, history and treatment?

@pookel

Hi, I read your book and loved it (and recently wrote you fanmail, too). One thing I wonder: what's your opinion on medicating autistic children? My kid is awesome, but he also struggles so much with out-of-control anger and frustration, and I am probably quicker than most parents would be to medicate him. He has been on moderate doses of several different meds since he was 5, including Risperdal. It's difficult for me to read the opinions of people who think that medications turn kids into "zombies" or that parents who medicate just want docile, obedient kids. All I want is for my son to be happy, and when he's screaming and breaking things, he isn't happy, either. Are psychiatric medications a good solution for autistic kids with anger problems? Are there other therapies or supports which might be more helpful?

Thanks so much, pookel. I'm sorry if I didn't answer your fan mail I'm actually drowning in email but I very much appreciate your enthusiasm!

As I said above, I am not a clinician and am not qualified to answer questions about whether an individual child should be medicated. That said, I spoke with many parents who have widely differing views about the appropriateness and effectiveness of medication in individual cases. I would never presume to judge any of them. In my book, I write about Shannon Rosa's decision to give her son Risperdal when his behavior toward his sister became particularly challenging; I know that, like many parents, the Rosas have tried various drugs for Leo with variously good and bad effects. I think that any of the drugs in use for autism are still very much in the early stages. Better drugs, with fewer side effects, certainly need to be developed. But I know many autistic adults who take medications to manage their chronic anxiety and they seem to work for them. Alas, the only sweeping recommendation I can make is to find out what works for your child and you, keeping in mind that even difficult behaviors can be communication.

Hi I have not read the book (yet!) but I'm wondering what your thoughts are about coming out as autistic. My generally happy high functioning 11year old often gets called weirdo at school. Do you think explaining his condition publicly in front of the class will make his peers more accepting of him? We're worried it may back-fire and they may call him more names. A psychotherapist who works with him suggested we do this...
Considering he stigma that is still out there, do you think this is a good idea? Thank you

@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.

I love the "Field Guide to Earthlings." It's a hilarious witty and informative book, but I admit it's probably not the best source of practical advice for neurologically mixed marriages, as it were!

David Finch (davidfinchwriter.com) wrote a wonderful book about his own marriage to an NT partner called "The Journal of Best Practices." It's well worth reading for anyone in a "mixed marriage." I just called Finch, and he recommends "Marriage and Lasting Relationships (with Asperger Syndrome)" by Eva Mendes. He says it's very compassionate toward both people on the spectrum and NTs. Sounds like a good tip.

Hi! Your book is so inspiring. Given that ASD is now more widely diagnosed and HFA such as Asperger's has become more 'accepted', do you see a day when society stops drawing a line between types of brain and their operating systems? No more 'NTs and ASDs' -- just people with different abilities. For instance, in the physical sense we would never compare sporty people with non-sporty people and call it 'disability' or 'failure'. Thanks for the book!

Yeh, interesting idea TheDoor - whether we can ever see those operating systems as a complete spectrum, and whether that would be good to do? My feeling is it would show progress in our level of understanding and acceptance

@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.

Hey fuzzpig! I'm really glad you're coming to see your differences in a positive light. This is not blind optimism or making light of the profound challenges that autistic people and those who love them face every day, but it's very important that we don't view people on the spectrum through a relentlessly pathologizing lens while failing to appreciate their characteristic strengths. Appreciating strengths in autism often unlocks the key to success, whether in the classroom or in the workplace, and it certainly helps people on the spectrum and their families live happier, more confident lives.

You question the safety of speculating about the neurostatus of people like Mozart and Tesla. I try to be very, very, very conservative about this retrodiagnosing, because there's a danger about framing autism as a mere eccentricity, while losing track of the fact that it's a quite challenging disability for many people. If Mark Zuckerberg and Bill Gates "have autism," why would anyone need help and support? That's not good, and it trivializes the struggles that families and autistic people themselves go through.

At the same time, I do talk about a couple of people in my book who likely would have been diagnosable if the diagnosis had been available to adults, namely the 18th Century scientist Henry Cavendish, the 20th Century quantum physicist Paul Dirac, and the 20th Century ham radio entrepreneur Hugo Gernsback. NOTE: In each case, I didn't do the retrodiagnosing. Cavendish was retrodiagnosed by the late neurologist Oliver Sacks; Dirac by his very cautious biographer, Graham Farmelo, author of a great book called "The Strangest Man"; and Gernsback by his biographer, Gary Westfahl. In these cases, I felt I was on firm ground in speculating that these people were on the spectrum.

@TheDoor1

Hi! Your book is so inspiring. Given that ASD is now more widely diagnosed and HFA such as Asperger's has become more 'accepted', do you see a day when society stops drawing a line between types of brain and their operating systems? No more 'NTs and ASDs' -- just people with different abilities. For instance, in the physical sense we would never compare sporty people with non-sporty people and call it 'disability' or 'failure'. Thanks for the book!

Thanks, TheDoor1! I appreciate it.

I appreciate what you're saying, but I do think that there's nothing shameful or demeaning about framing autism as a "disability" -- and one that deserves support and accommodations that are now often sorely lacking. For so long, autism was considered a very rare form of mental illness caused by bad parenting, and that was a horrible misconception in multiple ways. One of the virtues of framing autism as a disability is that the disability rights movement has made important strides in recent years in challenging bad laws and social prejudice against disabled people. The same thing is starting to happen in autism.

@JugglingFromHereToThere

I think neuro diversity is fascinating and am very glad to see a gradually increasing acceptance and understanding around these differences.

I'm interested in how AS might relate to other neuro diversity such as attention deficit (AD(H)D) and dyslexia

As usual it's personal too as I think my DSis may have undiagnosed Aspergers - growing up it was always put down to being shy but I think she has challenges with social skills that go deeper than this. For myself I wonder about attention deficit - one main challenge is concentration and also motivation is an issue. My DM hasn't been that emotionally available but this could be due to issues with her own parents as well as just how things were for the generation growing up in war-time. Additionally we think DD may have dyslexia - but she's doing well at 16 and I feel she is a creative thinker.
Anyway interesting to think about how we all think and behave slightly differently.

Am probably most concerned with how I can support my DSis.

Do you think it can be beneficial to seek a diagnosis for Aspergers/AS in mid-life?

Thanks, Juggling! Judy Singer, the Australian sociology student and writer who coined the term "neurodiversity," definitely intended it to cover conditions like dyslexia and ADHD, and to serve as a bridge between those communities and the disability rights movement.

Singer hoped that the concept of honoring neurodiversity would spread through the disability rights community as a rallying cry, as phrases like “Black is beautiful,” “Gay is good,” and “Sisterhood is powerful” had helped mobilize mass movements in the 1960s and 1970s. “I was interested in the liberatory, activist aspects of it,” Singer explained to author Andrew Solomon in 2008, “to do for neurologically different people what feminism and gay rights had done for their constituencies.” In her undergraduate thesis at the University of Technology in Sydney, Odd People In, she claimed that the “hidden” constituency for a rebellion of the neurodivergent was much more vast than traditional estimates of autism prevalence would suggest:

Think back over all those “odd people out,” the people who “seem to come from another planet,” “march to a different drum.” They are the brainy but socially inept nerds at school, the pedants who defy all attempts to divert them from their special interests. Think of those people who hover frozen and blinking at the edges of conversations, unsure when to break in, seemingly operating on a different timescale from everyone else.

@puddock

Book is on my library list!

My son was diagnosed with Asperger Syndrome at just 5, he is now 7 and we have not yet talked to him about his diagnosis. He has some interventions at school to support him with interaction but they are not exclusively for children with diagnoses (although of course school are aware). He is sociable, anxious, and empathetic - not many people's stereotype of an autistic child, although those with more experience do recognize it.

He is of an age and a level of understanding now that I think it would be good to introduce him to the idea of autism, what it might mean for him, what prejudices people with autism might encounter, how to counter that, and so on. Can you recommend any strategies or resources to introduce the idea of being autistic to a child, and any dos and don'ts?

Also, what do you think about whether children and adults with less-obvious autism should disclose their diagnosis widely? While he's young and the decision is more mine, I have tended towards caution because of my own concerns that he might miss out or being prejudged by adults he encounters whose understanding of ASC may not be very strong, but when he's older I would want the decision to be his. I can certainly see the benefits of being out and proud, both to the individual and to people with autism as a whole.

Thanks, paddock. I recently compiled a list of books I recommend for both autistic and NT kids and teenagers to help them understand autism. You may find it useful:

www.readbrightly.com/inspiring-books-on-autism-for-kids-tweens-and-teens/?ref=4E5F45130FD7

It sounds like you have an excellent attitude toward your son's disclosure. Give him as much information as you can, and eventually it will be up to him.

@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?

Thanks, MrsMolesworth! It would be great to introduce your son to the world of great writing by autistic adults, which talks honestly about the challenges that autistic people face without pathologizing them. I have a list of recommended books by authors on the spectrum on my website (scroll down):

stevesilberman.com/resources/

Good luck!

Hi Steve,

Another question about autism in girls. My dd aged 12 has been recently diagnosed with HFA. When talking with professionals I still hear comments such as ' well, girls do get it, but, of course, it's rare' and was told by a psychiatrist that my dd was sociable, chatty and made good eye contact, therefore implying that she couldn't have the correct diagnosis. However, she is crippled by anxiety, plagued with intrusive thoughts and hasn't attended school for almost a year.

How can parents of girls or women with autism challenge these assumptions especially when they are made by professionals who are supposed to help us? Do you think that women struggle more as they are often maskers who attempt to hide their difficulties?

Thank you. Just waiting for my DM to read your book, then she's passing it on to me.

Thanks for your interesting answer Steve - I think the concept of neurodiversity has been very helpful generally - good to hear about the woman who first wrote about it.

Still difficult to know how I might help my DSis even if I feel a diagnosis could potentially help her. In some ways maybe it would have to come from her, though I guess a conversation about it could be possible at some point?

@Devilishpyjamas

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

Oooh, what would Devilishpyjamas look like?

It's important to remember that "autism" is basically a useful social construct (and sometimes not so useful). It's a description of a distinctive constellation of behavior that ranges incredibly widely. But it's not a reference to a biomarker or any other thing that exists outside of the autistic person's behavior.

That said, I think the evolving wisdom among researchers and clinicians is that there are many "autisms" underlying conditions, with probably widely differing etiological pathways (causes, if you will) that produce this distinctive and widely ranging constellation of behavior. I understand that parents of profoundly affected and intellectually disabled children often bristle at the notion that their child is on the same broad spectrum as, say, Temple Grandin. In my book, I write quite a bit about profoundly disabled autistic people, such as a 70 page chapter on a boy named Leo Rosa, who has very few words of expressive language and is occasionally self-injurious. I notice that some people seem to miss the profoundly disabled people in my book, though I talk about them in nearly every chapter. I wonder if it's because they're rarely quoted (though I do quote Leo), or if it's because people would rather talk about eccentric geniuses. But they're there.

Thanks for your response. I agree that a diagnosis (recognising a disability) helped get my son the protection and support he needed at school and in social situations.