louis theroux documentary on autism

[sphil]

Next week, 19th April, 9pm on BBC2. It's called 'Extreme Love' - blurb says it focuses on young people attending an innovative school in the US.

Will watch - I like his programmes as a rule.

Love your blog Saintly and Archie is gorgeous, I just watched the video of him having a go on his new 'talker', it was really sweet when he kissed you.

Oh yes and the mum said that she didn't think the kids had any idea they were autistic. Which I thought was sad as I bet they do

Yes I was a bit hmm at that too.

but I'm not sure that Nicky, for example, will necessarily have an easier life than Brian

Yes, I think they will have an obviously different experience, but both will struggle.

I agree about nicky's life not necessarily being easier, the way he acted was good in the ASD environment but if he had been in MS and threatened to stab someone he would be expelled if not attacked himself. I would consider him at risk outside of his secure world. He was adorable.

I love your blog Saintly :)

Thanks so much for your post jimjams. Ds1 is 5 and I still feel in the grief stage (although it's a lot better than it was!). Comparing him to his peers and his siblings still causes me a lot of pain. It's wonderful to hear that in all likelihood things will get easier and easier. I think a lot of it at the moment is trying to manage his needs alongside those of two other young children, especially when I'm single handed and outside the house. When he and they get older I'm hoping it will all be very different.

I found the programme hard to watch but was very pleased to see severely autistic children finally represented on tv. IME most people have no idea of this side of autism and the challenges this brings. Last year when the bbc had their series of programmes on autism to mark autism awareness month I felt there was a very marked absence of more severe children who couldn't speak for themselves and participate in the stage show or whatever it was. In some ways I felt this sanitised the whole concept of autism for the audience and that was sad. We face enough of a challenge, as others have said, getting family and friends to understand! They still want to believe he's going to grow up to be cheeky, chatty and quirky at worst. But then, they have the luxury of thinking that way I guess

I found it incredibly difficult when ds1 was 5 goggly. We were just beginning to realise that there was no miracle just waiting to happen, it was incredibly painful. Life with severe autism is rarely easy - we're having a blardy awful morning- the worst I can remember for years tbh, but it's not emotionally painful in the way it used to be.

And often weirdly the difficulties can make it more rewarding.

I think ds knows he is ds ( including his autism), what he has only growing awarenes of is that other people do not know exactly what his needs are IYKWIM so is annoyed or surprised when grown ups do silly things like expect him to eat something he does not like or give him a hyme sheet when he cannot read.

I watched this with DH (special for its rarity) who thought Louis related well ( for a 'neophyte') with the children and both of us recognised our own child mirrored in some of the children.

Ds is a very sociable child too!

Does society mean "severely autistic" as in "severe autism plus learning difficulty plus speech-language difficulty plus (or equalling) behavioural difficulty"? Yup, that's a heck of a combination of different things that adds up to exhausted parents and children who need a lot of support too.

Severe autism by itself (without learning/speech disabilities) means extreme panic if there is a routine change, extreme social communication blindness because of a lack of ability to spot non-verbal clues and match up info on people correctly in the brain, and (often) major sensory processing disorders (hypo or hypersensitivity). People with Asperger syndrome can be severely autistic or moderately autistic or mildly autistic, and have a range of other disabilities as well (commonly dyspraxia, epilepsy etc) which can make life every bit as challenging for parents. It's not necessarily better to have a child with a higher IQ and speech if all they manage to do with the higher IQ is break out of every room and house and run for it, and then respond with hour after hour of swearing and abuse when back in the house.

Nor does it help people like me who have just been through an aggressive form of breast cancer and who try to explain to medical professionals how scared we are of their procedures, or how much extra pain they cause some of us - and get treated with contempt (because we can speak therefore are only mildly affected, therefore in need of nothing).

Many with autism are wonderfully behaved in terms of temper, whether mild moderate or severe, of course.

As Nicky on that film said, (paraphrased), his mouth has gotten him into a lot of trouble. So does mine. Using language with no clue how it affects other people is a recipe for bullying, exclusion, hate, sexual abuse, rape, unemployment and poverty. All of those are experienced in ample proportion for those blessed with an ability to speak in ways that p* off other people (without us having a clue why). Plus if we can speak and hide how autistic we are in front of people, the assumption is often that we need no help at all, and neither do our parents or family.

Very good to see the programme covering all sorts of communication ability and all sorts of intellectual IQ and showing the strain on the families. I will still be very glad when we sort out what's mild autism and what's severe autism, and still have total respect for people who have multiple other disabilities/conditions on top of it. I'd love a world where we get proper support for as many as possible - tailored to need, without a fight.

Autistic people of all kinds are fantastic and so are their parents. So much to bring to others, as friends or companions, as colleagues and partners in life. I'm so pleased to be a Government adviser on this, working with Peers and MPs... and with the NAS, Ambitious about Autism and all the other major groups, and in good contact with people from all ends of the autism spectrum, and with parents whose offspring are at all points on it too. What they get is someone who is clueless who they are (I'm faceblind too) and coping with a whole range of disabilities including the autism, but I'm determined to help make a difference for each and every person, and help give each and every person the same respect and same chances for a good life.

there was a lot I recognised, in so many of the children.

little bits here and there - the tantrum in the car because of not stopping at the supermarket; the meltdown at teh hairdressers; the sidelong looks and grins from Brian (I think) when he was about to do something to see if Louis reacted, and the general sociability too.

it is hard when the children are so little (and dd1 is only 7, yet I feel we are through the worst in terms of grief) - everything is still so raw, from a recent dx, to not being able to predict the future, to family/friends still askig all those well-meaning questions about cures and outcomes. and the sense of what you have lost (in terms of thelife you had before, and the life you expected to have with children) is still very new too. I think it is only the last year or so that we have started to calm down a lot more and see our new life (with its restraints and frstrations, as well as the unexpected good things) as one we are comfortable with. there has been so much forced upon us, that I think it is natural to rail against that for a while.

I am still none the wiser as to where dd1 fits in - but that too will come with time, as she carves out exactly where she is.

I enjoyed the documentary but it would be good I feel if a documentary could be done about living with a child who is not autistic but has S.L.D and severely challenging behaviour,in the U.K and the challenges that those families live with.

Amber - that is such a good explanation of something that I struggle to get across to people in everyday life. DS2 doesn't fit your definition of severe autism without LDs - he is probably moderate (or even mild on a good day!) in that he copes with change pretty well, especially if prepared, can read facial expressions/tone of voice/body language and has moderate, rather than extreme, sensory difficulties. But he is always described as severe because of his LDs and his speech difficulties - and I agree with that, because he IS severely disabled by these things. But it's severe LDs rather than severe autism. If I say that to people I often get a slightly pitying look, as if they're thinking 'poor woman, she's deluding herself'.

In contrast the recent diagnosis of my nephew, who has HF autism, has been met with incredulity by certain members of my family, because he can talk and read, despite the fact that his behaviour is more challenging, his non-verbal social communication/understanding more limited, and his sensory difficulties more marked in some areas than DS2's. This does them both a disservice - DN because his difficulties may not be recognised and worked on, and DS because his 'severe autism' label clouds peoples judgement of what he can do.

I think I will print it off!

Thanks again jimjams, it means a lot to read encouragement like that from someone who gets it.

Tbh I have never had a problem accepting that ds1 has autism as such (ie I have never, ever expected any cures etc) but I am still...how do I put it...bitter. I still resent the fact that this happened to me and my family, out of all the people we know. My bitch sister, in particular, is so smug and so insensitive about her perfect life with her ds and I just want to strangle her. It just seems so bloody unfair. I want to be able to go out as a family and do what everyone else does, with children that get easier as they get older and give me and dh more freedom. I don't want to deal with unpredictable meltdowns and the uncertainty around every outing.

I just don't want to be different. I still haven't come anywhere near accepting the fact that people stare at us and pity us. And sometimes I wish that this was all a bad dream. Although obviously we love ds1 dearly, and are often proud to have him as part of our family. He is making great progress, is very loving and affectionate and has relatively few challenging behaviours, so in that sense we are lucky

It's just so much harder for us than everyone else. And sometimes that's hard to swallow.

Rant over

Ah yes that sounds familiar googly. I used to get incredibly angry that no-one knew what it was like and that certain family members didn't get it. As part if the growing minds stuff we did I have attitudinal training (stupid american term- it's counselling really) which I was adamant I didn't need, but in fact turned out to be one of the most useful things I've done. Kaitryn who does it has worked with families dealing with autism for years so completely understands. She asked me whynit mattered to me that people 'got it' (and indeed why would they) and that along with other stuff helped me let all that go.

The people who have never got it still don't, but my days of wanting to stab them have long passed . don't get me wrong in the 6 week summer holiday I usually eventually reach a stage where I really don't want to be around NT families but I'm not really bitter about it now, I just sort of recognise it as being something that's not helpful to me when it's so full on for us and we can't do half the stuff they're talking about. But I'm not bitter now (I used to be certainly).

Ds1 getting into surfing and finding a place to be accepted for who he is at the surfing beach helped a lot as well.

I've come back on here after a long time away (and name change). I am gutted - but not remotely surprised - that some parents of autistic children on here don't want to see 'severe' autism. This reflects exactly what happens in RL, as if our children are just a bit 'too special'. I find many parents of HF autistic children - or just more able disabled children - are as ignorant about us as the general public. WE ARE NOT CONTAGIOUS!!!!

Louis Theroux represented some of my reality and the reality of some of the families I know. If that is uncomfortable, shame on you.

So many comments about how wonderful Nicky was. Well, I loved them all and their long-suffering parents. Brian's transformation into a gentle giant was a REAL comfort to me especially.

Go Louis

Brian was lovely. Really really warmed to him. Am wondering who you are thought Jeffrey

Blardy iPad though not thought

That's it exactly, I need to let it go. Somehow! For the last 3 years I can see I've been expending so much energy wanting people to get it and having very stabby thoughts indeed when they didn't/ don't.

I'm not sure I can even put my finger on why. Except that maybe because I feel so hard done by at times, so frustrated, so restricted, so bloody drained, that I NEED my experiences acknowledged and validated by others, particularly family members. I guess part of it is wanting them not to 'get off scot free' by not having any awareness of our struggles, and how fortunate they are

But yes, no good is coming of it. The ones who already want to care do and the ones who haven't been interested thus far are likely never going to be. And banging my head against a brick wall is getting old

Ah yes I was there. In exactly that place. I do understand 100% what you mean. I let go of it very suddenly tbh, and it really helped me.

I think we have 'enough' people that get it now that I don't really care about those that don't. I know what you mean about the need to have it recognised though. I certainly used to feel that way. Now I think we're so surrounded by people who get it, from school to respite to friends in the same situation that they form a little barrier against the rest of the world (and prob why I find it hard in the summer when we see less of some of those people).

that some parents of autistic children on here don't want to see 'severe' autism

Who has said that?

I find exactly the same. In term time I have a bit of a cosy bubble going on, in lots of contact with ds1's lncredibly supportive special school (always at the end of the phone) and the other parents. And of course lots of respite while he's there! We really don't feel so different.

Then holidays hit and I pretty much fall apart. NT families everywhere I look, and NT friends not quite understanding our limitations.

But thanks so much again, I'd never thought of letting go before and I'm going to start giving it a go. Will be life changing if I can manage it!

, i'm sure i didn't say 'i didn't want to se severly autistic children on tv'??

I just thought that the proggrame focused more on severly autistic children rather than the whole spectrum (which i know is huge and hard to cover in a 1 hour documentry). I only found it hard to watch as i had never seen children restrained like that and never so fast (as soon as they showed signs of a meltdown they would force them onto the floor which is not what we do when a meltdown is brewing). I know some parents have to deal with very violent children and its a part of Autism for a lot of people but for us there are worse things to deal with than meltdowns and there are also a lot of fun rewarding parts of bringing up an autistic child (which they didn't seem to show).

Several people have expressed disapointment that the violence was shown. googlyeyes has said it all about sanitising autism. I am so grateful Louis was able to show people just how desperately difficult autism can be if it is accompanied by challenging behaviour. Organisations like the NAS understandably have a focus on projecting a positive image of autism (in the face of society's negativity), but the very real negatives seem to be brushed under the carpet.

'Meltdowns' in my house mean a cycle of violence at the moment resulting in almost complete social exclusion and community invisibility for my son. We are facing the high possibility of having to put him in residential care before he is 18. If he didn't 'meltdown' , we would not be in this position. His sadness, lack of friendships, school phobia, anxiety and adolescent confusion are all things we need to deal with too, but the violence is unavoidable, constant and critical. I struggle to think of anything worse that we deal with at the moment.

The only people who seem to be able to understand just how utterly devastating that is that are other parents in the same boat. Brian gave me such hope

I watched the programme and thought it gave a both sympathetic approach and ear to these families. I would much rather LT make such a programme than a company like Endamol.

Tbh I found Nicky the most frightening. Both in terms of his violence potential, mood swing potential and if he were my child, his future.

I think I woukd find him the hardest to live with.

I haven't seen any posts on here suggesting anyone woukd have rather not seen the more severe side btw

Yes agree Jeffrey - ds1's behaviours have the potential to limit his life far more than his non-verbal autism. I wrote briefly about that recently

This morning he was more physical than he has been for a long time. He's e same height as me now and I had to read him the riot act in an enclosed public space. Luckily he did start to behave as we were swimming which he loves, but if he was unable to calm down and was kicking off like that each time we went he simply would no longer be able to go.

I feel fortunate that as he's got bigger he's begun to understand and respond to consequences 'if you do that then NO '. I'm aware it could have gone the other way and also that that sort of understanding at his level of autism and functioning is rare. But maybe it's like Brian in that understanding comes on sufficiently that you can begin to reason and have a life that isn't just firefighting.

Good luck googly - although remember as well it is utterly normal to feel the way you do. I used to feel guilty for feeling that way, but letting that guilt go was the first stage of being able to move on.