Children with SN in book and film: help needed please

[ClaireTMumsnet]

MNHQ here: we've been approached by someone who used to be a frequent visitor to the MNSN boards - you can see what she says about that below - and she has asked if she can pick your brains about something. We'll send her a link to this thread, so fire away

How do you feel when you discover a book, film or TV drama about a child with special needs? Are there any/many? I am a mum of a severely learning disabled and autistic child (now 15, still non-verbal, doubly incontinent, no self-care skills, no sense of danger, etc) and was at one time a prolific user of the Mumsnet SN talk forum – it was the women on Mumsnet that got me through the early years, to be honest.

I have now written a novel and have given the central character a young child with SLD/autism. Although it’s fiction, I have drawn heavily on my own early experiences. The Huffington Post want me to write an article about why it’s important to represent SN children/parents in book and film. My publishers say that there are likely to be more articles needed for both press and radio, talking about this. I know why I think it’s important but I wanted to seek the views of other parents of children with SN.

I remember there was a thread on the SN forum at one time in which people were posting the names of films which featured a disabled character (Notting Hill was one of them) and how pleased everyone was to hear of new films where disabled people were represented. But how important is it to you that the lives of parents of children with SN are represented in book and film? Why do you think this matters? It may seem like a question with an obvious answer, but I really want to be sure to represent the views of others, not just myself.

But how important is it to you that the lives of parents of children with SN are represented in book and film? Why do you think this matters?

I can't speak for anyone who has a child with visible disabilities.

I think that as parents of kids with invisible disabilities, we're generally invisible and our lives are not understood at all.

Regarded as indulgent helicopter parents by ex friends and family who have no clue about anything outside the NT world, who refuse to learn and and refuse to accept any intervention apart from 'making' the child NT is the right thing to do.

I don't know of any book or film that's addressed that point. Often it's not until you discover these boards that you realise you're not alone, other people have fought the same fight as you for diagnosis, understanding and interventions.

The system where it should be easy to do that is a work of fiction and I sometimes wonder how much of our lives are taken up with fighting the system, how many times are we knocked back and have to push and push because even the simplest things have huge barriers or professionals who "don't understand" and "don't see" invisible disabilities.

Thank you, BlankTimes - this is really helpful. I hadn't thought to express this issue about 'invisible' disabilities. (This is precisely why I asked MNHQ to start this thread). My son has some odd behaviours now, and because of his wide gait you can see that he is disabled, but when he was younger - apart from a bit of hand-flapping - you couldn't tell. When he had a meltdown in a supermarket queue, we got tutted and stared at. I had one man tell me to get him out of his (Supermaclaren) buggy and make him walk ( he couldn't walk at that time). And yes, I've had the same from ex-friends/family and work colleagues who have no concept of the pain they are inflicting when failing to understand that my reality of being a parent is not the same as theirs.

I think we need more 'own voices' in the publishing world for a start. So books written by people with disabilities themselves.
They don't have to be about disability!
It's about people with disabilities becoming more visible.

Disability is interwoven into so many people's lives but it rarely seems to break through the surface into public consciousness unless people are touched by it themselves.

So it's not just about the books / tv shows themselves, it's about how they are promoted, where they are promoted etc.

That said, it's great when a show or book has a disabled character but it's not made into an 'issue' ifswim. It's not about being an object of pity, but rather just another facet of being human.

The same for carers; but again it's a fine balance between being shown as a martyr (ugh) versus showing the hard times caring for someone with a disability can bring sometimes - and also the joy.

I'm not keen on anything too miserable (like The Eastenders!), but equally no fairy tale endings either.

I didn't really like The A Word (my DS is autistic too) because the boy was nothing like my DS, so I couldn't identify with it.
My fave autistic character on-screen is Abed from Community (again nothing like my DS but I liked how it took the viewer into his worldview). But as I’m not autistic myself I always feel wary commenting too much about the representation of autistic people in the media.

We needs lots of disabled characters in books / tv shows / films to show how varied disabilities are, and that no two people with the same disability are the same, just as no people without a disability are.

Good luck with the book! MN has been a lifeline to me over the years too.

Why do you think this matters?

Because this is the reality of thousands upon thousands of parents with children who have a disability, parents who have adult children with disabilities and the adults with disabilities who have no parents. I can't recall any film, drama or soap that I have seen recently or a book that I have read where either a central character or a minor character or Indeed an extra has had a visible disability let alone an invisible one. There have been more documentary type programs on disabilities more recently.

I do recall reading a Dick Francis novel (many years ago) where the main character is a man who has a prosthetic arm.

For many of us parents of children with disabilities our reality is fighting for every scrap of support, differentiation, education, equipment, our lives revolve around meetings with people who often don't have a clue what it's like to be disabled or to have a child with disabilities, who don't really care whether the support that is needed is provided or not, who don't care about the costs borne by parents who have to take their cases to tribunal after tribunal because of their inability to abide by the law.

Then there are those who deny that there is a problem or that it is better to "wait and see". You become ground down by it all and at the end of the day you watch a movie and realise that disabilities don't exist in the world of film.

Thanks Marshmallow – again really helpful. I had the same problem with The A Word – the boy was nothing like mine either and if I’d seen it at a time when we were still struggling to come to terms with DS’s developmental delay, it would probably have made me feel even more isolated because the kid was in fact WAY more able than mine! Every disabled character I’ve seen on TV (Alex on Corrie for instance) seems to be reasonably high functioning. So, that’s a really good point about needing a wide/diverse range of disability so that more of us can connect with the characters. This thread is proving so helpful already. (Community looks great fun – not seen this. It doesn’t appear to be available to view in the UK?)

And thank you EnterTheDragon. You've summed it up perfectly. We all know this about our own lives but, as you've pointed out, others don’t and won’t – unless we find a way to show them.

I've been lucky enough recently to hear a man with aspergers talk about being autistic in education.
He's the typical person with a hidden disability who could explain what is thought and felt daily and the actual affects on mind and body.

I think this message is important to get out to people the same way all the MH propaganda that's out there atm.

Try and touch people in a way that makes them understand that what you see isn't always a full picture and some pieces of the puzzle have been hard to fit into place.

I'd be very interested in reading this book.

Interestingly I read about this today:

www.google.co.uk/amp/s/www.radiotimes.com/news/2018-06-19/david-tennant-to-star-in-a-moving-new-bbc4-comedy-about-bringing-up-a-disabled-child-2/amp/

Not sure how I feel about a non-disabled actress playing a child with learning disabilities though. I know it's acting, but still.

The Crippled Scholar blogger has written some excellent posts on disability representation in fiction, mostly about adult stuff but relevant all the same. The biggest problem is often the whole inspiration porn thing where the disabled character is a plot device to effect transformation in the non-disabled character/s. I suppose a big problem is giving disabled characters an authentic voice and this is always going to be harder when your character may be based on someone who is unable to articulate their position. Honesty about this is important, but can be reflected in the writing. Good luck.

The film that has most affected me recently is 'Tully'. I found it very close to the bone and thought it illustrated very well the frustration at not being able to stop the anxiety your child feels. The trying to remain in control of yourself when you are running on fumes. The misunderstanding of friends/family/school and the utter relief you have when you meet someone who seems to 'get' your child. I left the cinema feeling utterly drained but also relieved that someone seemed to understand some of the challenges of raising a non NT child.

I think it is important to have depictions of people with disabilities particularly invisible ones as it gives people with no experience of it some idea what families go through.

This is all incredibly helpful. Thank you so much. I hope no-one has a problem with me quoting directly some of what’s been said? I hadn’t heard of Tully and am stunned to hear about the David Tennant comedy. I’m a bit wary about it being a comedy. I hope it doesn’t make light of our experience – obviously there are funny and touching moments in all our lives, but ‘trying to remain in control of yourself when running on fumes’ is the reality for most of us, 90% of the time. Also, can I ask... with ref to Marshmallow's comment above, how do others feel about NT actors playing learning disabled characters? If my book becomes a film or TV drama, there’s no way a child as severely learning disabled as my DS could play the part. He doesn’t understand more than basic commands (shoes on, come here, etc) and would not tolerate being on a film set or understand why he was there.

I thought Black Balloon (film) was great. Told from the point of view of a teenager who has a severely autistic brother. Some bits were hilarious which didn't detract from it overall being a deeply serious film. There was also this film I watched about an opera singer who had a lot of children all brought up to play musical instruments. One child had a disabled arm so was doomed to play triangle in the family concerts. And another child was autistic but gifted at the piano but the mother wouldn't accept her giftedness. Sorry not helpful that I can't remember the name of the film! Once also watched [another made for TV type of film] about a girl who was paralysed after a road accident. It was incredibly touching and I noticed at the end it had been made by Christopher Reeve. Actually not sure whether the actors in those films had those special needs in real life, although probably not I suppose. Bookswise there are The Curious Incident of the Dog in the Night Time and the Rosie Project. But in both of those the autistic protagonist is so gifted that it's not like the experience of bringing up a child with special needs that most people have.

I'm still early days and the demands placed on DD aren't generally higher than she can manage at the moment, so we're very lucky. I agree with all the comments about just having as many different representations as possible. Everybody's experiences are so different, and ND people are probably if anything even more diverse than NT people so the range of experience is just massive.

I guess the thing I would like people to see about our situation is (a) that where DD does have problems it is because of the outside world being rigid and inflexible, and placing (often unnecessary) demands and expectations that people will fit in a "normal" range. At home we have a pretty lovely time because we can accommodate her.

But then also (b), because we can accommodate at home, but the world is unaccommodating, we never know if we are doing the right thing as parents or not in trying to prepare her for the world. At one extreme we would be pushing her constantly to learn to do all the things that the world will expect her to do (but if you go too extreme you end up trying to get rid of stims and awful stuff that harms the child). At the other extreme we could accommodate anything and never push DD at all, but then she would miss out on experiences that she would enjoy (there are lots of physical things she has found very hard but we've pushed through and now she loves: climbing, scooting, cycling, swimming - she was close on refusal on all of them to start with but now loves them), and it might make her more vulnerable and less able to enjoy life when she's older.

So how hard to push and when to encourage her to take a break and go easy on herself is a really difficult tightrope. I don't know how common this if for parents of NT kids. I suspect they can be more relaxed about letting their kids determine their own pace, and not worry about them being too scared to try things or throw themselves at things they can't manage and burn out.

I'm sure lots of outsiders would see us as helicopter parents but by intervening I do think we can help DD go at the right pace and get satisfaction from achieving things but also not get upset/overwhelmed. But it's hard and you always feel you are getting it wrong one way or another (even before strangers start chipping in).

Another weird one is wondering about your own neurology and often coming to terms with that at the same time as coming to terms with your child's diagnosis. Especially given that most people don't have a clue about SN or about what ASD actually is until their own child gets a diagnosis, it's a lot to take in at once (and lots of "common knowledge" on the subject is complete rubbish - so you have to de-educate and then re-educate yourself).

Congratulations on the book!

"I guess the thing I would like people to see about our situation is (a) that where DD does have problems it is because of the outside world being rigid and inflexible, and placing (often unnecessary) demands and expectations that people will fit in a "normal" range." Do you have any examples of that, LightTripper? And yes, Shybut, I thought of The Curious Incident and The Rosie Project but, as you say, a) these are incredibly gifted characters - not the norm for the majority of us (but probably what many people with no experience of autism now equate with autism) and b) what I am trying to capture/represent here is our experience as parents of children with a disability and the everyday reality for us, rather than the experience of the person with the disability per se (although that comes into it too). The A Word definitely did that and I think it did it well. But (from where I'm sitting) the child was still quite high functioning and so the parents' struggles were very different ones from my own. This thread is giving me ideas for the next book (which is a sequel featuring the same disabled child and mother) and what I should include, as well as for the Huff Post article... invaluable!

I think DD is (so far) quite "high functioning" (I always say that with trepidation because I know the demands on her at 4 are going to be completely different at 8 or 12...) so we're lucky that the problems we have are more in the irritations bucket rather than serious problems.

But things like expecting her to join in at party games or dancing, to be able to transition easily from one activity to another, to follow an instruction without understanding the reasons for it, to say "Hello" when she meets somebody familiar (which honestly I would like her to do too, but after already over a year of working on it I am slowly waking up to the fact that it is just incredibly hard for her, and I think she is actually more likely to do it of her own accord if I lay off rather than constantly needling her).

We're lucky most of our friends and family know about DD's diagnosis, accept it, and haven't said anything negative. But you can see looks from strangers sometimes and you just think "if my DD's unusual (not even disruptive) behaviour is the worst problem in your life then you are truly blessed and should take some time to just appreciate that!"

This is very much first world problems I know. I suppose I just remember my social problems as an older child and see it coming down the line for DD and have no idea really how to prepare her for it. I think I am just aiming for as close to cast-iron self belief as I can get, because she is going to need it.

Thanks LightTripper, that's really uesful. Your DD is so lucky to have you - sounds as though you've got a really well-balanced approach to helping her. I think what I've really taken away from this thread more than anything is that I can't possibly represent all children with SN in my book, but that by representing one on the severe end of the spectrum that we all have to deal with, it's a little bit more awareness raised of the need for many more books and films like this.

I think it's great to see autism in the media, as helps build awareness, but I wish there were more of the severe type of autism (like my own boy's) which is often in combination with a severe or other learning disability. I think learning disability is the last taboo, so glad to see this post. The media image of autism at the moment is too skewed towards the quirky genius, whereas the fact is that c 50% on the spectrum also have a learning disability, plus I think the figure is that 1 in 3 will remain minimally or not at all verbal. Doesn't make such fabby telly, but it is the true picture. Good luck with this!

I one hundred per cent agree sickof! Thanks so much for the stats which I will use. I hope you don't mind me quoting some of the other things you've said too? It's really interesting for me that you say this, because so many people nod with recognition when I mention that DS has now been given an autism diagnosis - as if they've been waiting for me to say that for years. But actually his severe learning disability (intellectual, along with poor muscle tone, poor fine motor skills etc) remains just as big an issue for him and us on a day to day basis.

Yes sure, and here is a link for the "minimally verbal" figure of about 30% on the spectrum. www.ncbi.nlm.nih.gov/pmc/articles/PMC3869868/

The point you make about learning disability is interesting. I agree. I have a son with a severe learning disability and autism, and a stepdaughter with autism plus a high iq. It's chalk and cheese. She has a top politics degree, a career, lives independently with her boyfriend etc. Whereas my boy will likely never be safe to set foot outside his front door alone, let alone get a job. One word just can't encompass those two ends of a spectrum, it becomes a bit of a nonsense.

I think also that it's not just an issue of the media over-focusing on the quirky, high iq end of the spectrum , but there are some real policy and funding consequences arising. For instance, many councils now saying their "high needs" funding block is under severe pressure.

"Whereas my boy will likely never be safe to set foot outside his front door alone, let alone get a job". That's my boy too. He can't even hold a cup of water in his hands unless it's got a lid and spout on. I have the DWP visiting me tomorrow to find out why he can't manage his own finances. I've told them that he is doubly incontinent, can't talk, understands little more than basic commands (and only then if in context) and tries to get into passing cars (while they are moving) if you let go of his hand when out in the street, but I sense I have another battle ahead....

It’s ridiculous isn’t it! That’s why Rosa Monkton is currently bringing a JR to challenge the fact that, at 18, we no longer have parental rights - even though kids like my own beloved boy will have an effective mental/cognitive age of about 4 for life.

DD likes watching films about disabled people, because she can see some people face greater difficulties than herself! She really enjoyed the film of Stephen Hawking's biography, and "Breathe", about a man paralysed from the neck down by polio (a true story).

I enjoyed reading Margaret Murphy's "The Desire of the Moth", as it featured a boy with autism, and any parent of a SEN child can see the poetic justice in the ending!

Chris Packham's autobiographical "Fingers in the Sparkle Jar" was very evocative for us of the era in which we grew up; and is an eye opener as to what school was like for adults with autism, when it was far less recognised than it is today!

I also found Temple Grandin's books helpful, for giving me an insight into SPD - why DD can melt down at certain noises!

Thanks for the book and film recommendations LadysFingers. Sickof, I didn't know about Rosa Monckton's JR. I will follow this with interest. It sounds as though our boys have a very similar level of intellectual disablity.