MN WEBCHAT GUIDELINES 1. One question per member plus a follow-up question if appropriate, ie once you've had a response. 2. Keep your question brief 3. Don't be disappointed if your specific question doesn't get answered and do try not to keep posting "What about me?". 4. Do be civil/polite. See guidelines in full here.

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

RonanOD Wed 21-Aug-13 13:58:14

LOL! Thanks David. Best advice I've heard yet! He loves the beach and would stay forever there. Kit Kats even more so.

Also love what you said in the Gaurdian article about the joys of having an autistic child. Few people have the courage to say what we parents of autistic kids are feeling.

roundwindow Wed 21-Aug-13 13:58:57

And forgive me if I'm exceeding the allotted no of posts, but I also think this: We probably need to let go of wanting compassion to flow as freely as we'd like it to and accept that for many people it's a bit tricky and can only flow down allocated channels.

Eg: my mum -- I can wax lyrical about some book I've read or film I've seen or new idea that's lighting my fire but until it's covered by 'The Times' (ffs) she will not countenence its merit. This annoys me (can you tell?) but I think to draw an analogy, we have to make sure that the plight of our children is covered by ALL channels to make it meaningful to whomever our onlookers may be.

So lovely parents like you, David, are going to be of huge value to us. Again, THANK YOU! Some people just seem to require some sort of weighty validation in order to shift their world view. Awareness-raising/compassion dam-busting has always been a tricky business. But there has always been movement, eventually.

DavidMitchell Wed 21-Aug-13 14:00:34

It's the least I can do.

You're the hero. Worthwhile people will eventually work out that you're more than a label. Just by surviving, just by staying upright - even tho' it's a hell of grind sometimes - you're improving the situation.

very best,

David

eskimomama

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.

JustGettingOnWithIt Wed 21-Aug-13 14:01:40

Heck that's not what I meant at all, (told you I couldn't articulate it) nothing tactless about it imo, just that there's this myth of x,y, or z somehow being better or worse, and short term descisions get based on it, in the long term it often doesn't turn out to be that at all.

DavidMitchell Wed 21-Aug-13 14:05:51

marchduck

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.

dear March Duck,

Thanks for your email - and I have much to learn, too. This is real lifelong learning. Yes, it's a heck of a wallop, the diagnosis, and THEN the emotional fall-out, and THEN all the practicalities - phew! Never stops. But hey, ducks are resilient things, and if they're tough enough the survive last March, they'll surprise themselves with the things they can do.

good luck!

David

sickofsocalledexperts Wed 21-Aug-13 14:06:33

I like your comparison to early Gay rights pioneers. Race too.

I think in 10 years, words like "retard' or "mong" will be up there for social opprobrium with n....... And p...

fourferrets Wed 21-Aug-13 14:07:53

thank you david

DavidMitchell Wed 21-Aug-13 14:09:44

JustGettingOnWithIt

Heck that's not what I meant at all, (told you I couldn't articulate it) nothing tactless about it imo, just that there's this myth of x,y, or z somehow being better or worse, and short term descisions get based on it, in the long term it often doesn't turn out to be that at all.

I understand. It reminds a little of a nursing manual I once read (long story) about how a second party can't measure, and has no business measuring, the level of pain that a patient is experiencing. The pain is real to patient and comparisons to what another patient may be experiencing are invalid. Perhaps similarly each special needs situation is unique to itself, and should be viewed & thought about in its own holistic entirety, rather than as existing on a scale of better and worse than x y or z.

DavidMitchell Wed 21-Aug-13 14:12:41

sickofsocalledexperts

I like your comparison to early Gay rights pioneers. Race too.

I think in 10 years, words like "retard' or "mong" will be up there for social opprobrium with n....... And p...

Amen,

and people who use the word 'autistic' when they mean 'recalcitrant' or 'inward-looking' or 'stubborn' or 'autartik' need to corrected, too. Gently, if it works: if not, we need to take those bleeders down.

JustGettingOnWithIt Wed 21-Aug-13 14:12:58

"each special needs situation is unique to itself, and should be viewed & thought about in its own holistic entirety, rather than as existing on a scale of better and worse than x y or z"

That's it, thanks.

sickofsocalledexperts Wed 21-Aug-13 14:15:39

Yes, "autistic" as an insult to mean "useless emotionally" has become the new trendy word for teens (see Chris Huhne's son)

Yet a more loving child than my boy you could not get!

DavidMitchell Wed 21-Aug-13 14:23:45

Crumblemum

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?

valid point, Crumblemum.

Real autism has yet to go mainstream. We need to see autism treated with intelligence on Doctor Who - and I'm serious. I think Mark Haddon's book did more to explain Aspergers than any amount of campaigning – I know there may be many many caveats, but the book brought the word into the active vocabulary of, I would say, millions. The point is that culture is the wind, and politics only the weathervane, and people with access to cultural outlets, or people with access to those people (!), should use it to dispel ignorance and replace it with matter-of-fact, this is how it is, truth. Then - to bring the chat back the whole circle to a comment at the beginning - the political will can then be found to fund autism therapy at the level we need, and not at the level of sticking plasters and fig leaves.

warm regards and thanks for your support, O Non-SEN parent - we need you too!

David

DavidMitchell Wed 21-Aug-13 14:25:15

Folks,

I'm really sorry but I have to go and pick up DD now or I'll be in big trouble. But thanks again for having me on the 'show' and my apologies again that I couldn't answer everyone. I feel very un-alone right now.

warmest regards to you all.

David

Chrisanthemum Wed 21-Aug-13 14:25:42

David it is uphill for the parents and the children. I can only speak with parents and students who face the same conditions as my son - he has multiple learning disabilities. The system fight you hard and ignores you at every step as if you are invisible. Everywhere is a desert and as cold and alien as planet Mars. I feel bitter. I found even if there are Laws and rights there for the disabled people they have to try hard and get to extreme lengths and loose years to get even crumbs.

misstrillian Wed 21-Aug-13 14:35:12

I have so many questions, but they all be come long winded and unintelligible, so instead I'll just say every little word or action even the merest suggestion you could try this or do that from 'helpful' family and friends- hurts, it builds up, you try your best, in the first few years after diagnosis you read lots of information, you get overloaded really, and then you have school on one side letting you down and family and friends (actually I don't have the latter- but that's more by choice) on the other compound it because of course their words affect us so much more, oh he'll eat what ever I give him, (strange he was having his usual bowl of krispies at yours at xmas then), have you tried this or that, have you read this book it's very inciteful I think it'll help you, he'll just have to shower/bath, there is noise in the world he'll have to get used to it. At first in the early days it's fine they are trying to help support you, of course generally they are well meaning but when you've been doing it alone for 14 yrs - no , I'm sorry but I've read more than you can imagine, tried more than you would consider possible and do battle with education repeatedly, last thing I need is 'advice' from someone who really doesn't understand. Perhaps oh I remember when he used to lie in the street and refuse to move hasn't he came on a long way since then or just ask how you are, how's it going, when I say oh it's difficult lately because he is struggling with x or y it's not to get advice, it's too let it out, holding it in because it's too painful to share, not much point if you feel worse, you learn not to tell people and just get on with it, its not nice but it's actually easier.

sickofsocalledexperts Wed 21-Aug-13 14:41:03

Oh I am so sad the last 2 posters just missed him, has he gone now?

KatieMumsnet (MNHQ) Wed 21-Aug-13 14:41:42

Thanks David for such an inspiring webchat. Fantastic of you to give up so much of your time and to pass on such great wisdom. Love the idea of Mumsnetters as pioneers - not always easy but definitely worth doing.

Many thanks to all the Mumsnet users who took part too - we'll let you know who won the draw shortly.

sickofsocalledexperts Wed 21-Aug-13 14:47:07

Yes I agree - when you have tried ABSOLUTELY everything it s very frustrating. I have been trying to teach my boy to add 1+ 1 for 10 years. Yet someone will always say "have you tried using sweets or other objects"

Yeeeeeeeeeeeeeeees, of course I bloody have. On Day 1!

But really they are just trying to think of something to say, to make conversation almost.

I feel for you both.

Thank you - great webchat.

We did quite a few expensive therapies. Learning and understanding reinforcement was useful but to be honest table top trial work ended up being damaging for our son.

Our biggest successes have been the talker - and I think because ds1 has explored it himself & owns it. It really is his voice rather than a therapy. And surfing. Together they have changed his life beyond recognition.

I did see talk of building a bridge to Ireland smile

ouryve Wed 21-Aug-13 19:23:02

Late to the party, but thank you for this and for being involved with the campaign, David.

And my thoughts on severity - it shouldn't be regarded as a simple overall volume control. The complexity of symptoms and traits needs a whole mixing desk (with all the sliders going up to 11 on some days!)

marchduck Wed 21-Aug-13 21:34:34

I was sneakily keeping up with the start of the webchat on my phone at work, but then my boss came down to speak to me, so I ended up missing most of it in real-time.
I've just read it all now; it was so interesting. I didn't expect a response to my comment at all, so thank you David for your kind and wise words.

GloriaJones121 Tue 27-Aug-13 23:50:09

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

handerson91 Mon 18-Nov-13 18:30:06

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now