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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'.


saintlyjimjams Mon 19-Aug-13 13:50:08

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.

saintlyjimjams Mon 19-Aug-13 13:50:26

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.

saintlyjimjams Mon 19-Aug-13 20:51:24

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.

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.

saintlyjimjams Tue 20-Aug-13 10:49:21

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?

saintlyjimjams Tue 20-Aug-13 11:31:59

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

saintlyjimjams Tue 20-Aug-13 11:35:29

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.

saintlyjimjams Tue 20-Aug-13 11:40:59

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.

saintlyjimjams Tue 20-Aug-13 11:46:22

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

saintlyjimjams Tue 20-Aug-13 13:36:18

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.

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