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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

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.

Sorry that was a bit long!

sickofsocalledexperts Mon 19-Aug-13 18:06:59

"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?

ohmeohmyforgotlogin Mon 19-Aug-13 18:40:02

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.

MrsTwgtwf Mon 19-Aug-13 19:18:48

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?

insanityscratching Mon 19-Aug-13 20:00:49

"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 smile

Rumours Mon 19-Aug-13 20:32:56

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.

sickofsocalledexperts - interesting question & I look forward to David's thoughts. It is something that has intrigued me since reading Lucy Blackman and coming across some of the (now many) kids who are severely autistic, non-verbal and type. (Carly Fleischmann is of course another well known person in this group). After watching videos and reading what they had written I have begun to suspect, that many of these kids are more organised than ds1. They were more in control of their bodies.

I have observed - and I make no claims for this at all - that after ds1 learned to communicate using his talker at sentence(ish) level he became much calmer and more controlled and less compulsive, or more in control of his compulsive behaviours. I wonder whether every thought used to be interrupted by some external stimulus that grabbed his attention.

I also came across this report by Naoki on how he learned to write which I thought was very interesting. katari.umin.jp/report_20090523/report_naoki_en.html

Sorry to butt in, never really sure if you're meant to on invited chats, but I think your question is probably one for all of us with severely affected children. How do we know whether our children might be capable of this? (And David sort of touched on that in one of his newspaper articles)

I actually love that this can now be discussed on a mainstream platform! Ten years ago the very idea was seen as bonkers/an example of denial.

PicturesofParadise Mon 19-Aug-13 23:39:59

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!

LottieJenkins Tue 20-Aug-13 08:08:02

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.

insanityscratching Tue 20-Aug-13 08:31:54

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.

sickofsocalledexperts Tue 20-Aug-13 10:16:42

Saintlyjimjanms - interesting points you make. I am a bit uncomfortable with the sort of "locked in " theory - that all autistic kid will come bursting out with lots of beautifully-articulated feelings and thoughts, if we can just find the right communications vehicle or "key". I feel that every child with autism is very different, and some of the stuff in the book doesn't resonate with me. The reason my boy jumps is because he is hyperactive, severely autistic and a rumbustious boy of 10 who just loves all physical movement and sensation. I know him better than probably any other human, viscerally, and I feel I would know if there were any other deep feelings or thoughts of dispossession in space going on.

Plus, as one who has spent long years teaching my boy painstakingly, via ABA, to read, write, type and talk, and yet we remain still at "the dog is big" stage due to his LD, I am a bit sceptical about ANY miracle autism stories of the awakening or cure type.

I have watched my very hf stepdaughter pretty much "grow out of autism", but it has been a slow, steady process, as she learns and wends her way through the mainstream school sector. And, crucially, she started off at the mild end of the spectrum, not severe like my boy - with a normal IQ and rapid development of speech.

I have no doubt that Naoki's story is true, but just feel his is an individual case, not some sort of archetype or template.

Lucy Blackman (who is very like ds1 & still very compulsive) describes developing language at 13 - and weirdly ds1 seems to be doing the same thing. He didn't develop an understanding of yes & no until he was about 10 (no comprehension of even the meaning of yes & no before then) & with the talker has developed language in a very toddler ish way. But certainly Lucy's language was not intact, it developed once she had a way to communicate & ds1's has been the same. I'm not convinced that he'll end up where she has, but he's definitely further than I expected him to be. With that has come increased control over his body & compulsions but I have no idea which came first - language or control?

I do think there are some with an intact language waiting to be unlocked but ds1 certainly does not fall into that category!! Once he has the talker we has a stage of singke words, then two words, now we're onto occasional sentences. But his ability to communicate varies on any given day - depending on how distracted he is by compulsiobs. And I have no idea where he will end up or what his capabilities will be. I've just taken to talking to him a lot, doing occasional talker instruction - although the main reason it's worked IMO is because he's been motivated to explore it and use it himself - and seeing what develops.

I suppose now I think that anything between where we are now to full expressive language is a possibility, despite the SLD's. Syracuse university has a video of Naoki & you can see he's distracted sometimes but he can also focus his attention on the letter board. For ds1 developing an ability to focus has made the biggest difference I think.

I completely agree that there isn't an archetypal autism but I guess looking at others gives you an idea of things that might work. I tried letterboards a few years ago - now I recognise that it was too early - ds1 didn't have focus & was too compulsive.

I also think stories like Naoki's & Lucy's & Carly's are useful in that it means you can explore things you otherwise wouldn't. I can't tell you how much the talker has changed ds1's life - and others attitudes towards his abilities - and even if his language develops no further it's already made a massive difference to his life now & future life. I'm not sure I would have tried had I not read Lucy's book.

sickofsocalledexperts Tue 20-Aug-13 11:14:33

Very true Saintly, new leaps re always possible, I am a total optimist.

But excuse ignorance, isn't the fact that my boy types (basic skills) on a keyboard pretty much similar to a letter board or other device?

Well possibly - although maybe not. Lucy Blackman (especially her because this is the sort of thing she talks about in Lucy's Story & Autism & the Myth of Being Alone) talks a lot about developing language & also being able to access it, & also how she cannot always choose how she acts. She talks about typing 'don't let me force you to have McDonald's' while forcing her PA through the doors. But it took her until her 30's to be able to say that she didn't want McD's. This was 10 or 15 years after she'd studied for a degree in English.

Reading her (& Naoki) & other books like Strange Son I've come up with the sense that language production in severe autism is so far removed from how we experience & so alien that it is hard for us to understand. There's lots in Lucy's b

Sorry - Lucy's book about progressing from full on support, to hand on shoulder to independent typing & also how her language developed in that time & her cognition. I'd really recommend it. And she didn't have language until
She started using it - ds1 was the same. He could do some odd bits if typing on a good day & he is now learning to write his name but none of this is (yet) IMO contributing to language development.

Sorry I really want to suggest reading Lucy's book & autism & the myth of being alone because I cannot summarise easily what I t

sickofsocalledexperts Tue 20-Aug-13 11:39:43

I suppose it is no surprise that autism presents so differently in every child, given that I think the latest research implicated 60 different genes. The permutations are endless.

It is very stark for me, having lived at close quarters with both the severe and hf ends of the spectrum. To me, the difference is not necessarily in the autism, but in the IQ.

I do think Naoki's IQ must be pretty high to produce the beautiful language, including metaphors and imaginative language.

Bloody phone / took from them. It's too much in 'fry your brain' territory. It's too different & too tied up in a world of compulsive movements & difficulties in what I call thinking in a straight line. If ds1 is running up & down leaping he is incapable of language - receptive or using the talker. Now he's learned to sit & access language for periods he's steaming ahead. But it took him really until he was 12 ish to be able to begin to do that. In the last 6 months that ability has increased a lot & so has everything else. But it's been about controlling limbs & presumably thoughts - not being at the mercy of every small sound.

Dunno - but I'd recommend reading everything written by anyone who is autistic, non-verbal and who types. There are differences between them but a lot of similarities in what they say.

I don't really think IQ can be measured in any meaningful sense without language. Ds1's google maps IQ is in genius level (if there was such a measure) but if measured using regular tests would be off the scale (poor - I doubt he'd be testable). Before the invention of google maps he had no way of showing that intelligence.

As language develops though his ability to problem solve in conventional terms is also being demonstrated. It's not good enough to be anything particularly wow yet - he's still on p levels - but he seems to now be able to think in straighter lines. To me, where he ends up depends on language & control over his body rather than IQ itself.

gazzalw Tue 20-Aug-13 11:46:56

I have no direct familial experience of autism but just wished to flag up that this translation by David and Keiko sounds like a 'must' for parents and older children alike, if only to help in the ongoing process of demystifying autism to the general public and health/education/CJS practitioners.

We will be getting hold of a copy of 'Reason I Jump' and reading it for a family discussion.

A question: What is the Japanese approach to autistic children and adults?

Chrisanthemum Tue 20-Aug-13 12:50:10

Early action is needed.

But the rights of special needs children and adults are suppressed because attitudes are archaic and loads of myths are spread and believed.

Son has six specific learning difficulties, Dyslexia and Irlen amongst them discovered at age 22 after starting a degree. I wish somebody had raised my awareness. Besides he has had 3 serious medical conditions . Professional support for the learning difficulties will be needed all the time. But as existing support is poor, Dyslexics and those with Irlen and their family are left to pick up the entire bill. None of us want us to depend on the welfare .

Question: Do you feel it is important to change the label from ‘disabled’ to something that shows ‘there are diverse humans’? Educate the parents what their and their children’s rights are and how to demand them?

nonstopholiday Tue 20-Aug-13 13:19:41

thanks for the webchat, I will read with interest.

saintly and sickof - interesting discussion. dd1 is currently exceeding all expectations, and would I suppose be seen as relatively high functioning. but deep down, she remains severe.

yes, she is verbal (very much so, although it's still quite scripted and repetitive, it's just that she has quite a wide repertoire of scripts!). she has interest in, and a certain ability to access, the world around her. but her autism is still severe. she still gets stuck in endless repetitive loops and compulsions, most of which she doesn't even want to do, yet has to complete the pattern/ritual, whether that is a verbal pattern, or a physical movement.

she can hold a brief conversation, and clearly (at times!) has some very interesting thoughts and feelings. occasionally she can articulate these. she can do this more if there are no other distractions. and she retreats into her patterns and rituals as a way of coping with the things she wants to do. we have just had a few different breaks/weeks away. dd1 loves holidays. yet they are still unbelievably difficult - she regresses a lot in terms of behaviours, yet does not want us to scale back our outings at all. now we are back home, and she is a lot calmer, she is commenting a bit more on what she found difficult, or what she enjoyed, but she was unable to tell us this when she was in the middle of it all.

interestingly on the physical compulsion/hyperactivity front - dd1 is rarely still. always pacing, jumping, or tapping. yesterday, in the car, she was able to pick something up from the car floor, using only her feet (she has a crelling harness in the car, and so her upper body is held still and she can't lean forward at all) - a display of precision and coordination I have never seen from her before. she did it three times (ds was throwing down a toy for her to pick up). I am convinced she only managed this because the rest of her was held so still - if I asked her now to do it, sitting on the sofa for eg, she would not be able to repeat it. trapping the rest of her body somehow enabled her to focus on the bits she needed to carry out the task in hand.

she used to categorise by smell (pre-language). she now categorises by music, i feel. I have no idea what her criteria are, but they are very firmly set. she has organised the music on her iPad into playlists - I have no idea what links the songs she has picked, it is not obvious, but clearly to her, they are linked in some way. she finds it very distressing if for eg, she hears two of 'her' songs on the radio, in the wrong order, or played in the wrong 'playlist' - makes for very trying car journeys sometimes!

I am rambling now, but just wanted to chip in with some thoughts on the severe/high functioning boundaries

oh oh, ds1 still uses smell a lot, and music. He has to have music on all the time (this is new) and plays the same bits over and over.

This is so interesting. And yes to loops. When ds1 was tiny until quite recently he used to do what we called 'patterning'. So if he went anywhere new we had to be careful to no let him set up a pattern or he would be stuck running in a loop (between 2 or 3 or 4 objects) for hours and it would be hard to break.

I really don't know which is the chicken and which is the egg in terms of language and movements/patterns/compulsions etc. We're recently back from a trip to Ireland. We last did the trip 2 years ago, and this time was so much easier, mainly because he was chilled and relaxed and didn't need to set up patterns & could wait for the next event. I won't post it here because this isn't what this thread is about but if you follow my guest blog post to my blog there's some photos of him just sat watching out for Ireland. Previous trips have involved patterns and loops that took place manically throughout the crossing, we'd have to try and swap kids part way through each crossing. Our last trip with a cabin he refused to stay in it and set up patterns and loops around the boat, so it wasn't just the change in boat design. This time he didn't need patterns, he could sit. I think you've given me a eureka moment nonstop (I've been thinking of the trip this year being easier in terms of ds1 being chilled, but in fact it was because he didn't need to set up fixed patterns of movement).

This need to not be moving all the time is incredibly recent. I posted a photo of him on Facebook in about June commenting that it was the first time he had willingly sat on a beach, & I think it dates from that.

My brain is whirring (an frying in the way it does when I try to imagine what it must be like to be ds1 grin )

Sorry David, I hope this conversation is relevant to you - please ignore me if not grin

nonstopholiday Tue 20-Aug-13 13:48:26

yy to everything being so much easier if the looping is absent.

mostly, these days, dd1's loops are linguistic, and so I bear the brunt, but she does still have a few compulsions that make everyday life a bit tricky. we do still guard against the patterning somewhere new, though (although let that slip on a recent break by the sea, and she had an icecream everyday on the beach - must remember not to book next seaside holiday during winter months grin. was clearly a seaside thing, not a holiday thing, because when we went away the following week, she didn't mention ice cream once (well, only to talk about the ones she had had, not to ask for one). god help us next time).

I have always had to guard against patterns - she sets up rigid ones so quickly, and a lot of the time it is impossible to avoid them. the number of times I have explained to her school that they need to watch out for:

repetition at the same time of day
repetition on the same day of the week
repetition on the same week of each month
repetition on the same date of each month
repetition on the same day of the week that she last worked with a certain tutor (due to shift patterns, this might only occur every 2 or 3 months, but dd1 will remember)
repetition of the same activities on the same day/date/week/whatever.

it is truly impossible to keep track of, yet I absolutely had to when she was younger (and non-verbal) as it was so distressing to her when a routine (to her) was broken/incomplete. it was a nightmare.

and yes, she throws us at times with either needing her pattern (from years ago!) repeating, or (catches us out just as much if we have prepared for it!) NOT needing it repeating. it's exhausting jsut trying to fathom it out, tbh, and this level of complexity and need for me (or anyone else) to be on top of things, is what, to me, partly defines the severity of her autism.

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.

marchduck Tue 20-Aug-13 23:44:33

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.

RonanOD Wed 21-Aug-13 04:13:59

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

eskimomama Wed 21-Aug-13 07:03:58

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

bee169 Wed 21-Aug-13 07:11:47

Hi David,

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?

DavidMitchell Wed 21-Aug-13 11:19:53

test

Crumblemum Wed 21-Aug-13 11:26:45

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?

JeanBillie Wed 21-Aug-13 11:27:31

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

insanityscratching Wed 21-Aug-13 11:37:00

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?

DavidMitchell Wed 21-Aug-13 12:10:13

dear Saintly,

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!

David

saintlyjimjams

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.

DavidMitchell Wed 21-Aug-13 12:25:51

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.

David

sickofsocalledexperts

"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?

DavidMitchell Wed 21-Aug-13 12:27:40

ohmeohmyforgotlogin

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,

David

DavidMitchell Wed 21-Aug-13 12:33:06

MrsTwgtwf

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,

David

fourferrets Wed 21-Aug-13 12:34:21

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

DavidMitchell Wed 21-Aug-13 12:34:57

insanityscratching

"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 smile

dear Insanity,

You're very very welcome. My wife did the heavy lifting, she's the brains of the outfit. Good luck with ds 18.

David

DavidMitchell Wed 21-Aug-13 12:38:38

Rumours

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.

dear Rumours,

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!

David

SunshineBossaNova Wed 21-Aug-13 12:38:56

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.

waitingforgodot Wed 21-Aug-13 12:47:31

Hi David!
My question is.... if you could give one piece of advice to parents of a child with autism, what would it be?

DavidMitchell Wed 21-Aug-13 12:49:54

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.

David

PicturesofParadise

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!

KatieMumsnet (MNHQ) Wed 21-Aug-13 12:52:58

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!

Katie MNHQ

DavidMitchell Wed 21-Aug-13 12:53:59

LottieJenkins

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.

dear Lottie,

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,

David

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.

DavidMitchell Wed 21-Aug-13 12:57:08

insanityscratching

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?'

DavidMitchell Wed 21-Aug-13 13:01:16

Hello Mumsnetters,

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.

David

DavidMitchell Wed 21-Aug-13 13:04:51

waitingforgodot

Hi David!
My question is.... if you could give one piece of advice to parents of a child with autism, what would it be?

dear Godot,

They Probably Know More Than You Think They Know!

warmest,

David

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.')

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

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

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