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Live webchat with author David Mitchell about autism, additional needs, parenting and This Is My Child: WEDNESDAY AUGUST 21 at 1pm(98 Posts)
We're delighted to say that best-selling author David Mitchell will be joining us for a webchat on Wednesday 21 August at 1pm to talk about our This Is My Child campaign, and his experience of parenting a child with autism.
David is the author of Cloud Atlas and The Thousand Autumns of Jacob de Zoet (which was the subject of an MN Bookclub chat a while back).
David and his wife Keiko Yoshida have a son who was diagnosed with autism five years ago. You can read David's accounts of his experiences with diagnosis, education and meeting his child's needs here and here.
David and Keiko have translated into English a book by Naoki Higashida called 'Reason I Jump'. Naoki was thirteen when he wrote the book, which describes his own experience of living with a severe form of autism.
Of Naoki's book, David says: 'For me, Naoki Higashida dissolves the lazy stereotype that people with autism are androids who don't feel. On the contrary, they feel everything, intensely. What's missing is the ability to communicate what they feel. Part of this is our fault - we're so busy being shocked, upset, irritated or looking the other way that we don't hear them. Shouldn't we learn how?'
And of This Is My Child, David says: 'I'm really honoured to be involved in this initiative of Mumsnet. When people don't understand the challenges our children face on an hourly basis, our children's lives are made needlessly tougher than they already are. Let's work out how to explain to the uninformed what's going on. Let's find a few extra grams of patience to put people straight. On the whole, people mean well and want to understand. Where the narrative about disability is wrong, let's correct it. Let's work to fling lazy language and false received wisdom into the skip of wrongheaded ideas. Let's use social media to embarrass public figures who think it's sophisticated to use the word 'autistic' as a synonym for 'recalcitrant' or 'isolated' or 'uncommunicative'. If they don't apologise, and mean it, let's mortify them. Disability is as personal and domestic as your skin and your kitchen, but it's also political. Politicians, and the people who advise them, take Mumsnet seriously. Let's mobilize. Let's bust some of these toxic myths.'
We hope you'll join us on Wednesday August 21 at 1pm to talk about autism, parenting, visible and invisible disabilities, and how we can all act together to make life a bit easier for parents caring for children with additional needs. If you can't join us on the day, do please use this thread to post up your questions.
Everyone who joins the discussion will be in with a chance of winning one of three free copies of 'Reason I Jump'.
Yes, all makes sense (we get verbal looping now - mainly about what's happening in the future).
And yes, although ds1 is to all intents and purposes just as severe as he ever was (still non-verbal, still compulsive, still lack of awareness of danger, still on p-levels, still finds noises etc hard to tolerate) and he still needs constant supervision he's also millions of times easier just because the constant patterning and impulsive dashing off has gone. DH is still a bit behind as he doesn't take ds1 out so much. So he still manages him in the way we used to have to. He panics if ds1 is more than a couple of steps away, and panics if there's an unexpected delay & is generally completely stressful to be around as he's constantly grabbing ds1. I keep telling him that you can explain to ds1 now and that he's not going to dash off in the way he did until very recently. He can actually be managed much more like an NT child now. He needs close supervision but I don't have to constantly think ahead over every detail, I can tell him something and then change my mind (!!). He might react badly if I mess up (such as driving him to the 'wrong' beach a few weeks ago), but he can calm himself - a year ago that would have been the rest of the day written off.
I am intrigued on which came first for ds1, the language or the relaxing of the need for fixed movement & patterns. I think from observation the language, although instinctively I would expect it to be the other way round.
I'd like to thank David and his wife Keiko for translating this book. It fascinating to hear the voice of a young teenager with autism.
My DD was diagnosed with ASD just before last Christmas; she is now four. She is verbal, but her language is functional. There is no history of autism in our immediate families, and it was a shock when her difficulties were first identified.
Since her diagnosis, I have been concentrating on the practical side of things; sorting statement, liaising with school and activities etc. All well and good, but reading Naoki's book has made me realise that I have been looking too much at what my DD can't/won't do; as opposed to what she is doing, and what she is communicating. I have much to learn.
Really enjoy your novels and am looking forward to reading your translation of Naoki's book. My ds is 6 years old and was diagnosed 2 years ago. He is generally a happy fellow but sometimes I feel at such a loss as to how to communicate with him. Particularly when he gets upset for no apparent reason. My wife and I sometimes obsess over whether we should try this special diet or that expensive therapy or read 50 other books on the topic. Reading all the other questions in this thread, I see the same kind of worry over and over. Do you have any advice for us stressed out parents?
David, thank you so much for translating Naoki's book, and also for your great article in the Guardian back in June. You put into perfect words the feelings of so many parents.
We are a French/Irish couple living in France, parents of an almost 4 year old autistic daughter, and I think your book would really bring an enormous help to French society. France is stuck decades behind when it comes to autism, psychoanalysis/"blaming the mother" is still very much present. We had to obtain our diagnosis in Ireland.
I am sure that this book, with your name and its Japanese insight, would help things move to a better direction, whether it is for families looking for better care and understanding, or "professionals" who need to update themselves asap.
I really hope it gets translated.
Thank you and best wishes for you, your wife and your son.
Thank you for translating this wonderful book. It was great to see such intelligence in a non verbal 13year old boy. I wouldn't be surprised to see many more children with unusual abilities.
Please could you let me know how Naoki is managing his depressive thoughts? and if so what has worked well for him?
Hi David. Thanks for coming on and doing a webchat.
I really like the MN campaign, and as a parent of non- SEN children, it's really made me stop and think and check if I'm being as helpful as possible. But I worry slightly that Mumsnet is preaching to the converted a bit. How do we reach the starers and the tutters and make them be a bit nicer?
Thanks for coming on to MN.
I've been moved by the This Is My Child campaign.
Can you tell us the one thing that we - the general public - could do to make parents of kids with additional needs' lives easier?
Hi David can I ask have you experienced the tutters and head shakers when out and about with your son and what has been your approach and what do you think the best approach is?
I have at times tried to educate, (ds was newly diagnosed) burst into tears (felt so vulnerable) and now because ds is 18 and it's obvious he has a disability I sometimes give them a piece of my mind which is sometimes very therapeutic.
Any tips or experiences you'd like to share?
Yes, Lucy's Story is a good book - and I know what you're about the distinction between 'realistic hope' and 'unrealistic hope' - the latter generates more grief.
Really glad to read about your son, who has the excellent sense to want you to drive him to Ireland. Apparently amphibious car-technology has come on in leaps and bounds recently.
More seriously, your funding question. I wish I had a cogent answer more helpful than the 'How about Not Buying that Submarine?'/'Tax the Bankers!'/'Why can't we just be more like Sweden?' kind of level. Yes, I would like more state money to be spent on kids with autism so that less state money has to be spent on them when they are adults - who could argue with that? Nobody, but the fact we are locked into annual budgets and electoral cycles means it ain't gonna happen. And yet, and yet. Social narratives do morph over time, 2013 UK is a pretty different place to 1983 UK, and we have to do what we can to ensure that future changes help people with autism and special needs and not harm them, and evolve a society where the act of spending x-many thousand quid spent by the state on a communication device for a kid who needs one is seen as a piece of common sense, perhaps like buying a decent hearing aid for a kid with hearing issues.
How? What does the 'do what we can' in that last para comprise exactly? Think, talk, act and vote. And in the meantime, we have to do what we can with the channels open to us now - lobbying and fundraising in the vast marketplace of good causes.
Still, on we go. You sound like a great parent. Good luck!
Briliant - I think The Reason I Jump is opening people's eyes to the idea that people with severe autism might actually be intelligent. Thank you for bringing it to the English speaking world. When my son was 5 I was given Lucy Blackman's book, Lucy's Story - it gave me hope (realistic hope as it happens), and I'm sure Naoki's book will do the same for many. I'd also love it to lead to a sensible discussion about FC (facilitated communication) and other forms of AAC (alternative and augmentative communication).
I have a severely autistic teenage son. He is non-verbal, but his life has changed enormously since an anonymous mumsnetter gave him a Vantage Lite communication aid just under 2 years ago. He can now communicate independently in sentences using his communication aid, his receptive language has rocketed, we can reason with him and he can argue with us (the most recent argument being last week when he wanted me to spend the next day driving to Ireland - no way!) At school he's made double the expected academic progress in the past year. Challenging behaviours have reduced dramatically with increased communication
And yet accessing these communication aids in the UK (and I would imagine Ireland) remains difficult. They are expensive pieces of equipment. Although I am sure that my son's aid will save many hundreds of thousands from his care bill over the years, this is not considered when applying for funding - it's just seen as an expense for health, social care and education to argue over (and refuse to fund).
So my question - does David have any ideas on how to increase access to funding these aids in a time of cost cutting? Should they be funded by the state, or should we be looking at alternatives? I spread the word about ds1's communication aid whilst knowing it will be out reach financially for most.
dear Sick Of,
Of course I don't know about your own son, but I think Naoki just got lucky when the autism cards were being dealt out - he has formidable autistic challenges in many areas, but behind his relative speechlessness he has the mental ability to catch thoughts, translate them into sentences, and then to pin them down via a keyboard.
Your question raises the kicker of 'severity'. His Japanese publisher describes his autism as 'severe', and when I see him on film, I'd agree with the diagnosis - but I've also learnt as result of the publicity I've done for JUMP that there's no common consensus on what 'severe' as opposed to 'medium-level' autism is. The severity of my own son's autism seems to fluctuate over time, and even during the course of a single day. When you're in the thick of it it sure feels severe, but then I read about hard-core cases of lashing out and faeces-smearing and I think I got off lightly. I'm wondering whether the severity spectrum idea from 'severe to mild' isn't a case of a metaphor that's handy in the short term but stops us from seeing things more clearly in the long term. i wonder if we shouldn't be thinking more in terms of 'parameters between which one person's autism ranges' than a single point on the spectrum where one person's autism can be handily located. Autism isn't 'flu.
anyway, best of luck. Your boy's lucky to have you.
"The Reason I jump" is just such an inspirational book and is really getting autism into the mainstream - even to the extent that our local branch of Waterstones is putting it right by the tills! But my question, as mum to a severely autistic boy myself, is how is it possible that Naoki is just so articulate and yet described as severely autistic also? Is it perhaps that my boy has learning difficulties on top, and Naoki doesn't?
No question but thank you for translating that book. Really helps to be more understanding and patient with ds who has autistic traits among other issues.
dear Oh Me Oh My,
Thanks, and long live understanding and patience, which are gifts that give back.
Good luck and I wish you the best,
The Radio 4 adaptation of The Reason I Jump was extraordinary - the sort of radio that makes you stop in your tracks. I can't thank you enough for reading your introductions so beautifully, and for somehow finding a child actor to read Naoki's words with such expression.
Radio at its absolute best. And a real eye-opener.
My only question is: please can you do more to raise awareness of these issues?
Dear Mrs Twgtwf,
I agree, Radio 4 did a great job, but I don't deserve any credit.
I can't imagine a UK with Radio 4.
Yes. I will do my best to raise awareness of autism, from a mixture of altruism and selfishness. The more people who have a decent understanding of what it's like to live in an autistic head, the better the life chances for my son.
Best of luck,
hi David. Haven't read "Reason Why I Jump" (yet!) but have read Ghostwriter, Cloud Atlas, Number9Dream & Thousand Summers.. over the years so am a fan & in awe of a chance to ask a question! Didn't realise your connection with autism either. I have a boy & a girl with aspergers syndrome - (my daughter has a mix of attention deficit disorder and aspergers). Both are highly intelligent & both have experienced difficulties in coping in mainstream school settings. My girl is now 13 and has utterely failed to "fit in". She is now school phobic and she suffered a breakdown just after Easter. So she is at home on anti-depressants receiving what little schooling I can give her (zilch really), and I am coming under pressure from the authorities to get her better so she can get back to school to be "educated" and "socialised". I am scared to send her back. Terrified actually. I think the education authorities should look to other ways of educating these children - eg virtual schooling - rather than forcing them into a setting where they feel so uncomfortable and stressed. Have you any thoughts
"The Reason I Jump" is an inspirational book and is giving me so much insight into ds 18 with autism. Thank you for translating it and getting it out there.
Looking forward to the webchat
You're very very welcome. My wife did the heavy lifting, she's the brains of the outfit. Good luck with ds 18.
Just want to say thank you for your book 'the reason I jump'. It arrived this morning and what ive read so far makes a lot of sense. I have two sons, both on the spectrum and both so different, but what ive read so far is helping me to understand them better.
Thanks, and I'm glad. There won't be a total overlap, of course - I think it may make more sense to talk about 'autisms' more than 'autism' - but if the book can help to re-remind us that an autistic mind is a subtler, richer and more thoughtful place than autistic behaviour sometimes suggests, then I feel the book is doing its job.
Good luck with your dynamic duo!
Hi David, I am a fan and it's good to have you on here.
I don't have experience of autism, but do have an adult cousin with moderate learning disabilities. I'm really glad you're getting behind this campaign - my cousin put up with a lot as a child. I also used to work at a charity for people with LD and autism, and know that there is a lot of prejudice and misunderstanding out there.
My question is.... if you could give one piece of advice to parents of a child with autism, what would it be?
Dear Pictures (and Saintly again):
you (both) make interesting points about how the inability to communicate seems to aggravate the rest of autism, and that how a few small hard-won gains in the communicative sphere pay big lovely dividends elsewhere, in self-management & self-injury for example.
It should always be a priority. The change in my own son once he mastered the phrase 'Can I have...' was just fab.
I have no crystal ball about anyone's future, but I've noticed how often my boy sorts things himself. We're so aware of the effort we have to make just to keep the show on the sometimes let alone to build a solitary railroad track across the empty vastnesses of autism (purple prose time, but hey what do you expect from a novelist?) that we forget that our even-more solitary ds/dd is also hard at work building the railroad from the other direction. They are working things out, manually creating systems that us neuro-typical bunch do automatically.
We shouldn't be so surprised when they surprise us.
But it's okay to be delighted!
good luck, and hear hear to what you say about Mumsnet.
I have just ordered this book, I have a son who also has severe autism, he spoke for the very first time at the age of 8 ( saintly once he was more able to ask/refuse things his behaviour calmed down hugely)
He can read, is perfectly capable of typing some obscure train station or location of toilets (his great loves in his life) into youtube, but is fully dependant on me for all aspects of personal care, he has a wheelchair when outside to keep him and others safe.
He has a wicked sense of humour and I adore him.
I do wonder though as he gets older will some of his less socially acceptable behaviours diminish and am curious as to what David thinks?
I'm really looking forward to reading this book and hopefully things will become clearer as to the inner makings of Naoki's thought processes.
Thank you so much to Mumsnet for this campaign, we do lead somewhat an isolated existence because of the lack of understanding from the community so any way to challenge disabalism has got to be a very very good thing!
Hello David and welcome to Mumsnet <waves to Ireland>.
Thanks so much for joining us. I see you've got cracking, so will let you get on. Thanks to everyone for their questions - keep them coming!
Hi David. My son Wilf is profoundly deaf and has aspergers syndrome. I find it very difficult as there is very little support for children like him. It seems to me that you either have a deaf child or an autistic child. If you have a child with both it's like you fall between both stools so to speak. I will order the book from the library and look forward to reading it.
I wish I could offer more help to you and Wilf than just observing that your situation sounds pretty tough and that the pair of you are heroes. My son is autistic, but his hearing is okay.
wishing you and Wilf the best, tho' by the sound of Wilf won the Brilliant Mum Lottery when he was born,
Thank you so much for replying - I'm going to read later as I'm out & about with my son at the moment so a bit distracted. Just wanted to say thanks.
My Jack can talk but it is so much easier for him to communicate by writing and he's an avid writer. He finds answering even yes no questions quite stressful a lot of the time but will happily engage in discussions by text, email and social media.
He first used his magnetic letters to spell the word oracle (teletext service at the time) at age two and it was like an epiphany we suddenly had a way to communicate with him. Plus he would always accept things far more readily if they were written down than if he was verbally told them.
This morning there's a note outside the bedroom door "Can I have a bath please?" which means he wants a bath instead of a shower this morning before we go for a walk in the Peak District. He wouldn't be able to ask that because he finds it hard to ask questions and before the note writing turning on the shower when in his head he wants a bath would have resulted in a full scale meltdown.
Jack sounds fascinating! My son finds yes/no questions hard too. His first recourse is echolalia, perhaps as a time-buying gambit while he works out the context and gets a handle on what exactly is being asked. With luck, by the fifth time we'll get a final answer, as whatsername used to say on 'Who Wants to be a Millionaire?'
Thanks for having me on your website, and sorry in advance that I can't clone myself and have 5 Mini-me's all typing furiously at once to do full justice to your heart-of-the-matter questions. Many of you know more than I do, but I'll do my best.
My question is.... if you could give one piece of advice to parents of a child with autism, what would it be?
They Probably Know More Than You Think They Know!
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