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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)
RowanMumsnet (MNHQ) Mon 19-Aug-13 12:42:04

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'.

Thanks
MNHQ

insanityscratching Wed 21-Aug-13 13:05:20

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?'
Jack hopes to be an author one day, he's on his second graphic novel grin Who knows? if he's ever published I'll send you a copy.

DavidMitchell Wed 21-Aug-13 13:06:08

SunshineBossaNova

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.

You're welcome, SunshineBossaNova,

and it sounds like you're already a small part of what can only be a vast ongoing solution to the problem of ignorance.

Thanks & fight the good fight,

David

LottieJenkins Wed 21-Aug-13 13:06:51

Thanks for replying! Your comments have made my day! smile

DavidMitchell Wed 21-Aug-13 13:07:05

insanityscratching

*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?'*
Jack hopes to be an author one day, he's on his second graphic novel grin Who knows? if he's ever published I'll send you a copy.

Yay, way to go, Jack! Authors rock!

Annakennedyonline Wed 21-Aug-13 13:07:50

Hello David What is your opinion about the unpleasant letter that was sent to a family in Canada?
I did not read it to the end since I did not feel the author of such an insensitive letter merited my attention.

I work almost 24/7 trying to raise awareness about autism as a mum of 2 young men on the spectrum and autism advocate trying to educate people like the author of this letter so that families like the family affected do not have to experience such insensitive and unkind words.

It seems to me that's the author of this letter is simply beyond the point where they would gain any insight from awareness training. Indeed I suggest that any efforts to increase their understanding of autism or any other disability would simply be an ineffective use of time. What we must not forget is the extreme negative effect this letter will have on the family . Not only does this hate mail produce disappointment it leads to on going stress because the family would quite reasonably be worried for their own safety and that of their child. It's because of this that the criminal law often steps in to protect the most vulnerable members of society if this happened in this case I could understand why
Anna Kennedy

waitingforgodot Wed 21-Aug-13 13:10:42

Brilliant! How true!

DavidMitchell Wed 21-Aug-13 13:12:53

dear Ferrets,

tough, tough, tough. It's very wrong that not only do parents of kids with special needs have to cope with the fall-out of special needs, we also find ourselves having to (try to) educate the people in social services who are (supposedly) paid to help us. I'm sorry, but apart from sincere sympathy for your predicament, I can offer no practical advice. A cogent and cool-headed letter sent to all parties saying exactly what the issues are, exactly what your fears are, so at least they can understand your position.

So sorry I can't help more.

David

fourferrets

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

Annakennedyonline Wed 21-Aug-13 13:20:04

Good Luck with everything and I wish you all the luck in the world! Anna Kennedy

DavidMitchell Wed 21-Aug-13 13:20:53

insanityscratching

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?

These days, I view us - our generation of parents and kids with autism - as pioneers in normalizing autism in public. Pioneers have a tough time. Please don't read anything bigger into the analogy, but I sometimes think that disability rights now are in a similar to LGBT rights in the 1980s, say. We're going to cop flak from time to time, and we have to be strong, and we have let people see that kids - and adults - will sometimes have meltdowns from time to time, and that this is NORMAL. if we can find the resilience to handle this, the narrative about autism over time will improve, and slowly the head-shakers and tutters will understand that the meltdowns are not naughty tantrums but the result of neuro-differences, and that there's a hell of lot more casual heroism on our side of the fence than they ever dreamt.

I find this helps, sometimes only a bit, sometimes more than a bit: we're not victims of disdain or pity, we're pioneers, we're educators.

That said, you wouldn't be human if you didn't feel flickers of despair or mortification, too!

Good luck,

David

DavidMitchell Wed 21-Aug-13 13:22:14

Annakennedyonline

Good Luck with everything and I wish you all the luck in the world! Anna Kennedy

why bless you Anna Kennedy,

Good luck to all of us. There are tougher, more admirable people in this webchat than me tho', I can tell you!

warm regards

David

roundwindow Wed 21-Aug-13 13:22:26

Hi David, thanks so much for your presence this campaign. I'm really moved by your beautiful and (hopefully) rabble-rousing statement in support of it (the one posted at the top of this webchat) And I agree wholeheartedly with your expressed hopes for what can be done.

Especially the bit about deploying the few 'extra grams of patience' to put people straight. We can do it! Over on twitter I joined the chat about our experiences of dealing with public reactions when out and about, and said:

"I try to just turn to the shocked onlookers with my biggest smile. This disarms people, I find..."

And the next step from here is to utilise this newly-opened-up-stranger-connection to take one tiny step towards making the world a more hospitable place for our children... I dunno, say something matter-of-fact about the manifestation of their quirks, model loving acceptance.. hopefully it'll rub off, spread, grow.....

DavidMitchell Wed 21-Aug-13 13:24:38

JeanBillie

Hi David,

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?

Thanks

dear JeanBillie,

You're already helping, just via your attitude.

Please be patient, please radiate non-judgmentalism, if you're in a cafe and a kid with autism comes and nicks one of your chips give the mum or dad a cheerful grin and say something nice, and you will turn stress and embarrassment into sunshine, just by doing that.

That kind of thing. Bless yer.

David

DavidMitchell Wed 21-Aug-13 13:27:53

roundwindow

Hi David, thanks so much for your presence this campaign. I'm really moved by your beautiful and (hopefully) rabble-rousing statement in support of it (the one posted at the top of this webchat) And I agree wholeheartedly with your expressed hopes for what can be done.

Especially the bit about deploying the few 'extra grams of patience' to put people straight. We can do it! Over on twitter I joined the chat about our experiences of dealing with public reactions when out and about, and said:

"I try to just turn to the shocked onlookers with my biggest smile. This disarms people, I find..."

And the next step from here is to utilise this newly-opened-up-stranger-connection to take one tiny step towards making the world a more hospitable place for our children... I dunno, say something matter-of-fact about the manifestation of their quirks, model loving acceptance.. hopefully it'll rub off, spread, grow.....

You said it, Roundwindow, Amen.

It's endless, painstaking, hard-won labour, but just as we try to educate our kids towards independence, let's try to educate The Normals towards acceptance and tolerance and understanding.

sickofsocalledexperts Wed 21-Aug-13 13:35:28

Did you use ABA ever with your son - we have seen great benefits with my boy ?

zen1 Wed 21-Aug-13 13:35:42

Hello David

I just wanted to say how much The Reason I Jump has helped me understand some of my 4 year old's behaviours. He is starting school in a couple of weeks and I gave a copy to his new teacher before the end of last term. She wrote a note to me in the holidays thanking me for lending her the book and saying how insightful she found it. I'm so glad it's helping people appreciate what it is like to live with an ASD.

DavidMitchell Wed 21-Aug-13 13:36:40

eskimomama

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.
Anne-Marie

dear Anne-Marie,

That's awful. The Refrigerator Mother thing is a horrible, poison dagger of a myth that has no place in 2013. The word 'disgusting' gets bandied around a lot, but given how HARD mothers of kids with autism work, it's the right word: disgusting. How depressing that the much-vaunted French medical system does not extend to enlightenment about special needs. JUMP will be coming out in Dutch, German, Norwegian and Hungarian - I may have forgotten one or two - so hopefully French will be added to the list soon. I don't care which book/which voice does it, but something has to lob 'blaming the mother' into the wheelybin of pernicious crap-headed thinking forever.

Thanks for making me aware of this. Sorry you had to. If the book gets a French publication, I'll do as much media as I can.

Good luck,

David

sickofsocalledexperts Wed 21-Aug-13 13:39:10

Yes the French "psychoanalysis for autism" thing is a total disgrace - it would be great if someone like you could highlight. Just the thought of them sitting down, full of their numbskull theories, asking my boy about his childhood makes my blood boil!

DavidMitchell Wed 21-Aug-13 13:41:47

sickofsocalledexperts

Did you use ABA ever with your son - we have seen great benefits with my boy ?

dear Sick Of,

yes, we've found ABA has worked/is working best for our son. But we've also seen it's horses for courses, and that other approaches have useful ideas. Perhaps the trick is working out what any one kid's unique autism is about, and importing methods from whatever approach/school/treatment that could benefit the individual. But certainly, a pick'n'mix with more ABA-type goodies bag than any other has been our approach.

have to go and earn a Smartie now!

David

DavidMitchell Wed 21-Aug-13 13:44:03

zen1

Hello David

I just wanted to say how much The Reason I Jump has helped me understand some of my 4 year old's behaviours. He is starting school in a couple of weeks and I gave a copy to his new teacher before the end of last term. She wrote a note to me in the holidays thanking me for lending her the book and saying how insightful she found it. I'm so glad it's helping people appreciate what it is like to live with an ASD.

Really delighted to read your message, Zen1,

Knowledge about autism from any source is good, and if I've been able to contribute a little bit of light in the field, that's worth more than all the novels I've written put together.

Best of luck staying Zen-like now and in the years ahead :-)

David

JustGettingOnWithIt Wed 21-Aug-13 13:46:51

Hi, thank you for being here.

I wanted to pick up on this:
“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.”

There are two disabled youngsters here, one with severe brain damage (from an accident) and one with ASD. No one expects the child with brain damage to be anything other than how she is, her 'unsociable' habits disgust people but they get it's how she has been left, no one suggests it’s my parenting that may lie at the bottom of the latest problem, no one suggests that if she can manage X, then one last push could ‘fix’ her, and no one suggests that everyone else could of course do a better job with her.

I can’t really articulate what I want to say properly, but there is no question to me that the idea that ds who has ASD a high Iq but low self care skills or ability to automatically transfer skills, and is fully aware of it but often can’t recognise it’s impact, has somehow got of more lightly than dd who’s limitations also often protect her from the world and people around her. IMO in the long term deciding something is lesser or milder because it's destructive impact is less publically visible, isn’t at all helpful to anyone.

sickofsocalledexperts Wed 21-Aug-13 13:47:29

I wish that the UK would embrace ABA more - there is a whole lot of anti prejudice. I think a combination of ABA and mainstream is the perfect mix, certainly for many autistic kids. Yet Teacch is still used and ABA seems hated by the educationalists (don't know why - cost? Old prejudices?).

Round me, they are about to open up an ABA unit attached to mainstream. Perfect IMHO.

Plus, I think ABA training for LSAs would be great (though anything is better than the no-training-at-all they get now)

DavidMitchell Wed 21-Aug-13 13:53:28

RonanOD

Hi David,

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?

Thanks,

Ronan

dear Ronan,

I know how you feel, I really do, and I still feel it. I suppose you get to know that communication isn't just about talking, it's about reading signs, and deduction, and getting stuff wrong til you get it right - ah, endless! There IS a reason why he's getting upset, it's just it takes a hell of a lot of practice to work it out. The good news is, you get better at it, and your generally happy little fellow will also get better at it, even if sometimes you both need the ingenuity of Doctor House MD.

In general (he said, bracing himself) I've yet to see real evidence that expensive therapies/special diets have done what they say on the tin. We're depressingly vulnerable to the little voice saying, 'This could be the one! This could be the cure!' But nope, I've not seen it happen, not outside the leaflets or marketing materials. I'm not saying all purveyors are therefore fraudulent, but I think cracking on with what you've got is a more fruitful way to spend time and money than hoping for 'cures'. It isn't a disease, it's an structure & electronics of mind.

Go to the beach and share a Kit Kat, or a bag of chips, or both, at the same time.

good luck mate, stay calm & patient & know he WANTS to communicate with you, just keep the channels as open as you can,

David

eskimomama Wed 21-Aug-13 13:56:32

Thanks so much for this David, it will be so appreciated. I hope you manage to protect yourself during these media campaigns, articles, interviews against all the personal questions, as they must be painful to answer publicly. This is very brave of you and your wife.
I also hope your future work (if not related to autism) will not be judged as from "the autism dad", as it feels like so many of us walk around with a big A sticker on their forehead after telling people our child has autism, if you see what I mean. I had to stop working to look after my little girl who has such a broken schedule and cannot cope with daycare for very long, and I feel like my identity has been reduced to "the autistic little girl's mom". It doesn't have to be like this.
Best of luck, and a big thanks for your incredible support.

DavidMitchell Wed 21-Aug-13 13:57:02

dear JustGettingOnWIthIt,

Thanks for your reply, and sorry that my ignorance of your circumstances caused me to write something tactless. I appreciate that phrases like 'Getting off lightly' aren't helpful.

My best wishes are nonetheless sincere,

David

JustGettingOnWithIt

Hi, thank you for being here.

I wanted to pick up on this:
?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.?

There are two disabled youngsters here, one with severe brain damage (from an accident) and one with ASD. No one expects the child with brain damage to be anything other than how she is, her 'unsociable' habits disgust people but they get it's how she has been left, no one suggests it?s my parenting that may lie at the bottom of the latest problem, no one suggests that if she can manage X, then one last push could ?fix? her, and no one suggests that everyone else could of course do a better job with her.

I can?t really articulate what I want to say properly, but there is no question to me that the idea that ds who has ASD a high Iq but low self care skills or ability to automatically transfer skills, and is fully aware of it but often can?t recognise it?s impact, has somehow got of more lightly than dd who?s limitations also often protect her from the world and people around her. IMO in the long term deciding something is lesser or milder because it's destructive impact is less publically visible, isn?t at all helpful to anyone.

JustGettingOnWithIt Wed 21-Aug-13 13:58:12

(I should have mentioned that my dd is in her 20's, and ds is 18, so they are no longer children officially and we are at that 'longer term.')

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