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.

Jeffrey it sounds as though you think HFA = no violence? maybe im getting that wrong but if that is what you think then its not true. myself, my other children and my home bear the scars believe me.

I got the impression from those who had concerns about violence being shown was that its those sorts of behaviors that are often focussed on and that as some were worried the programme was going to be exploitative or sensationalised that was a concern. Not that they wanted to see a 'sanitised' depiction of autism.

I dont think that anyone was bothered by seeing the so called ugly side of autism and im a teeny bit insulted that you would think any parent of an autistic child would think that way given what we all experience of other peoples ignorance.

But again maybe im getting what you're saying wrong.

Our day to day experiences and our children may well be different but we all struggle.

It would be insane to turn all of this into a 'them and us' scenario.

Yes Starshit I agree re Nicky, I said he reminds me of my son upthread, when he said his mouth has got him into a lot of trouble that also reminded me of my son and is the thing that worries me the most for the future. I worry he'll get beaten up or killed or hurt someone himself.

Star - DS is very like Nicky and I agree with what you say about mood swings etc but I don't know how I would cope with the physical and emotional drain that must come with managing a child with obviously severe behavioural problems. I think that would be very challenging indeed.

There is a difficulty with the more HFA/AS child sometimes in that, although superficially able to reason, they don't actually always accept reason so getting them to do what they should do can still be very difficult despite their language and other skills. You might not have a fight but you end up in protracted battles about everything.

And DS will still never accept your point of view no matter how many times you go through the same 'what should you do if DS2 calls you a name, don't hit call mum etc'. He knows all this but it doesn't change what he does. Nicky seemed very like that.

But I cannot compare this emotionally taxing reasoning with a child who just sees life very differently to overtly challenging and physical behaviour.

That's just my view anyway.

Ds1 is sometimes extremely physically challenging, but usually not.

It is hugely different - appropriately is right.

When ds1 is not being physically challenging to others he will hit himself, bite himself, he'll do a loop stuck on some set phrase that I have to repeat for hours, or he'll do whatever else he does, set routines, insisting on certain directions, screaming etc Etc etc. But this morning he had one of his rare physical moments, I was hit, punched, kicked, we have one pane of thin glass left in the house which he whacked with his head (before our dfg he broke 5 windows with his head), he went to headbutt me. I had to wrestle with him on the queue to a water slide as he tried to whack me with people all around. I have no idea what is wrong (ok he didn't want to wait for the slide but I have no idea what the earlier stuff was about at home).

Yes the day to day stuff can be tricky, but being a punchbag is a whole different level of difficult. I'm just grateful that for the past two years it's been very rare for us, and I hope it stays rare or at least manageable now we're entering puberty.

Had he been as relaxed as he was last week I would probably have taken him to the beach this afternoon but I just couldn't handle him alone today and the person who helped me take him swimming couldn't work this afternoon. He's much better for getting out as well, so it would be worryingly easy for behaviour to spiral.

No Amberleaf, I don't think that HFA = no violence. I know that not to be the case and I can't see where I said that. Violence is violence, whether HFA or LFA.

My point is that some people on here actually expressed disappointment that LT showed that autism sometimes = violence. Those people appear to be parents of autistic children.

Star, dd1 is very simialr to Nicky, dd2 is more severe and not much speach but TBH Dd1 is harder work and i worry more about her future as she's more aware of what other people think and more anxious about things gooing on around her, dd2 is happy most of the time (appart from today where she has been crying and melting down over everything as she didn't sleep last night), she doesn't care as much about things going on around her and is oblivious to the fact she has Autism (though she's still classed as HFA).

I'm not saying that they should not have shown the violence (i agree people need to see it so they can understand it), i was just shocked that the floored them so quickly without trying other things first (i don't know, maybe nothing else works for the children they featured), my dd's are still very young (6 and 8), i always try to distract them and move them away from the situation before i would think to hold them down. Sometimes dd2 will chose to lie down and be squished with a gym ball when stressed but i have never needed to force her to the ground (i know some parents need to do this to ensure their and their childs safety). I find each child/person with Autism amazing and individual and i enjoy watching documentry's about autism but i do find the Amarican ones harder to watch. I would happily have my family filmed to show people what 'autism' means to us having 2 girls on the spectrum.

I would also like to say how great i thought the school was and its a shame there are not schools like this all over the world, i loved the way they had classrooms set up as shops and how they prepared the children for real life and work (thats just what we need to do here in the uk).

saintly, so pleased for you that these very violent outbursts are rarer - that sounds tough.

DS is profoundly learning disabled but very verbal. I have to reason verbally with him and repeat myself endlessly as he leans into my face and demands one thing after another all day. He is intellectually probably well below Brian's level, is doubly incontinent, is unable to go to a freezer and take out food and cannot self occupy much at all, but boy can he witter on and on and on!!

I wonder why he did go to the US? Is his next programme set in the US too?

Marne totally agree that every single individual with autism is entirely different, just like anyone else. It is very much what autism - or any other disability - means to us, what it does to the individual and how it effects the whole family.

The rather over-enthusiastic pinning down thing might be very American. I worked with an American psychiatrist who was doing her elective here and she expressed surprise that we didn't strap psychotic patients down to the bed with leather straps just like they do in the US.....!

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!!!!

Think it was that part bolded above that gave me the impression that you thought parents of children with HFA dont 'get it'

I think if you read the posts prior to the shows airing you can see what people were concerned about.

I think yu are misinterpreting what people have said.

Oh Jeffrey the repetition is teeth itching isn't it? Ds1 is described as non verbal because he has one comprehensible word (mummy) but I know what 'nee neen' or 'naiya nanee nee nee' means so get forced to give the comprehensible version a lot. If I ignore he grabs my face and turns it towards his ABA stylee until I reply (I'm not surprised that so many kids have problems with that ).

Yes the outbursts directed towards another person are rare. He'll take it out on himself, but this is more manageable in public as he's relatively still. He loves going ou and being active and seeing new things/staying in hotels etc. So I think it's important for him that he is given a lot of behavioural support. Luckily his sld/pmld school and respite are brilliant and although he has his moments I honestly think his behaviour is as good as it could be. The public suck lemons but he's actually fine and not doing any damage to anyone.

The UK approach is definitely to give space first Marne.

HF can equal violent. My son (10 years old) has no LD, fairly academic, in mainstream (with full-time support) but has always been incredibly violent and harmful, in his behaviour towards himself and other people. Kicking, head-butting, slapping, punching, biting, head-banging, attacking with furniture, knives, scissors...

Very very aware that it is wrong an dangerous and very remorseful afterwards BUT, in meltdown, it is often his only reponse.

Autism is so many different things. Someone with classic autism and LDs is not the same as my son. I'm not even sure if the challenges are comparable. But we have to get over, as a society, the stereotypes that LDs=violent and HFA/ AS = quirky and compliant. The 'symptoms' can cross over.

Also, I think severity should be judged on how limited someone's life is by their autism. My son's OCD, obsessions and violence limit him, as do his sensory issues; he needs 2:1 care out and about and receives high rate DLA for care and mobility to reflect his need for a very high level of care, despite his intelligence. He can do things on computers that most adults can't, but can't use a knife and fork, wash himself or cross a road.

Whereas I know adults with HFA/ AS who can run a business and a household. So, they have the same label but can manage life fairly competently.

My son has the POTENTIAL to improve to a level that would put him in a different world to someone with classic autism and LDs, but his autism limits him more than some of my friends' sons with much more severe autism e.g. no speech, not toilet-trained at 10, because they are happier, more compliant and have no violence.

It's how the autism limits life that measures severity of impact, I think. You can't generalise because each child is so different, but I guess we can say that comparing someone who functions well in society in a job, is verbal and can run a household independently with someone who will need lifelong care to communicate and survive is a bit difficult...

For appropriatelyemployed as you asked earlier. Louis's next programme is also filmed in the US and is on the subject of dementia.

I can only assume he filmed in the US due to him receiving more co-operation in terms of access to children and their families. Can't ever imagine any LEA opening any of their schools up to such scrutiny.

At least such a programme was made and I am glad that LT made this programme. Who else seriously could have made such a programme?. I think that any other presenter or any other tv company along the lines of endamol for instance would have completely sensationalised the issues.

This is from Louis's own website:
"We base ourselves in New Jersey, the number two state in America for its rates of Autism. According to the latest stats, one boy in 29 is diagnosed with the condition. (Rates for girls are much lower.)

Services for Autism in New Jersey are considered to be among the best in America and we spent much of our time in an extraordinary school, the Developmental Learning Centre in Warren".

Yes. Attila - I see the point. If you want access to the children in schools too. Also, there would be nothing comparable here I imagine.

Most of LT's work seems to be in the US these days. I imagine there is a more fertile ground for documentaries

'I think severity should be judged on how limited someone's life is by their autism'.

Totally agree with that notparanoid. How the parents and siblings lives are limited is also the issue.

Amberleaf, I can see how my comment was difficult to read. Fair point - I said it wrong. Perhaps I should have said 'non-violent' rather than HF. My point was that I was gutted that some posters did not want to see the violent side of autism on the TV when some of us are crying out to be represented and understood

there are similar schools here, but they are not as well funded or as big.

eg dd1 is at an ABA school - it has around 20 pupils, as opposed to the nearly 200 at the DLC. it is still very much hand to mouth. they try to do as many different activities and set ups as the DLC, but obviously funding has a big knock on effect. what you alos would not easily get here, in a similar school, is the wide range of ability shown - ABA places here tend to be for the severe (as seen by society) end only, and you would not see many Nicky's in an ABA school in the UK, I reckon.

agree the LEA probably would not open up schools to that degree of scrutiny.

I was worried that (as discussed at the beginning of the thread) filing in America woudl equal a sensationalised, OTT documentary. but it wasn't. the closest it came was the swiftness to restrain, and who knows how that was edited each time, or why (if not edited to shock) the immediate reaction was restraint.

This is what I mean silverfrog, whether it is scale or the differences between the children's abilities, I am sure there is no such school like that in the UK.

You would end up with a focus at one end of the spectrum and I think this as interesting for it's look across the spectrum.

oh, definitely agree.

part of our massive fight was to prove that dd1 needed to be at her school - because she does not have 'challenging' behaviours (well, not to anyone outside the family, anyway). everyone (from the LA) involved in her case thought it absolutely fine to just accept that she woudl not learn anything at the LA provision - they kept just repeating 'but she is not severe enough to be at an ABA school'

I hope they were all watching this programme, and that it made them think just a little...

ae, I do agree with you but I just know I would fear Nicky more than Brian for example. Probably Brian is more challenging on a day by day exhaustion level. Wasn't it his parents that said a residential placement is inevitable?

Wasn't Brian already in residential care? A group home I think. He was only home during the day at weekends

Oh, I'm getting mixed up. One of the mums said that residential was where hey were inevitably heading.

I guess you're thinking about the younger boy (whose mother lay on top of him to calm him). Seemed he would definitely end up in residential sooner than later and I can see why but I do worry about what happens at that point. If he is unmanageable at home does that mean he has to kept medicated when he moves on? Is it a meaningful existence?

I guess you are referring to me Jeffrey.

Yes, I do have a ds who has autism, who also happens to be HF and yes I did say at one point on the thread that I was concerned that the programme appeared to be focussing only on violent and extreme behaviour.

Nowhere did I say that I didn't want to see any violence - or indeed children across all areas of the spectrum represented. In fact I believe the opposite, I think it's important that people are shown an honest picture. What I was concerned about was that, at first, to me, the programme appeared to be being be cut/edited to only show extreme behaviour. As Amber said, what I was concerned about when I wrote the post, was that I thought they were going to only focus on violence (and btw I include Nicky's language and anger in that) and use that to sensationalise the programme and not put across the full story.

Yes of course violence and extreme behaviour to varying degrees and extremes is a very real part of life for many, many families who live with autism, but it isn't the whole story. I wanted the programme to show that life with a child who has autism has many aspects, yes, meltdowns, voilence, anger etc all come into it and of course they should be shown, as does the impact this has on the families involved, but there can also be love, laughter and so much more - I didn't want people to react with just 'Daily Mail' style point and stare sensationalism, I wanted people to understand what it's really like.

I wanted to people to see what life is truly like for the familes involved as well as what they were doing at the school to support and teach the children and how/why their approach was working - and eventually they did just that - although I would have liked to see more.

I did actually post later saying that I had posted too soon and felt that, having seen the second half, I realised I had posted too soon and they did in fact give a more balanced picture than I initially thought they were going to. That wasn't in response to them showing Nicky, it was in response to the more sensitive handling/questioning and frank conversations with the parents later on in the programme and the fact that they showed the children in more than one situation - ie not just in meltdown or anger.

To be honest, I think what's needed to fit everything in, is a whole series, rather than just one short documentary.

I am sorry if my post upset you, but to be honest your insinuation that I am ignorant about severe autism, plus the frankly unnecessary 'we are not contagious' comment, implying far worse than the ignorant one, didn't do much to help my mood either.

However, having had a bad day with my "'HF, more able disabled ds'" who has screamed, threatened and trashed his way through the day, I may be being a tad oversensitive myself here.

googly - a good resi placement can be much better for someone who has extremely challenging behaviour. I've heard it described as a 24 hour curriculum which reflects the level of input a good placement would provide (and more likely to be found at school, rather than adult level). I have no idea about the States but here there are some very good resi schools.

LA's here also have the option to provide a higher level of home support. Our LA has introduced what they call 'wrap around care' for children who would otherwise be in resi. They go home frequently but also have very regular overnights in the local respite centre (ds1 goes overnight once a week, these children go far more than that). It gives families a chance to get their life back without putting their children into resi. Although I often complain about my LA they do seem to have done a good job with wrap around.