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.

frizzcat slightly off topic I would be interested to learn what benifits obama has brought to the US I must say during his presidential elections, I was very interested in his ideals, however my interest did drop off, any info or links would be appreciated if you are knowledgable of where I could learn more.

www.autismvotes.org/site/c.frKNI3PCImE/b.6518557/k.5A3A/Federal_Health_Care_Reform.htm

Here you go festi - they've just got it through the supreme court

I thought squashing the child looked awful but was probably very comforting to him. Ds1 is always asking to be squashed - loves it.

I thought the SCHOOL were too quick to use restraint. They leapt in when there was plenty of room to stand back.

thanks frizzcat

I thought it was really good. I filled up at the start when Marcelo started crying & hitting because they weren't going to the supermarket, I'd had the exact same tantrum from ds yesterday about touching a lamppost Even though ds isn't half as severely autistic as Marcelo it all looked so familiar.

To put the bit about the violence into context. There was a documentary about autism in America called Loving Lampposts. It mainly focuses on the quirky behaviour & got a bit of criticism for not showing any of the "ugly" side of autism. That may have been behind the mum saying that people needed to see that this is what autism can be. I was glad they showed her saying that it was a whole spectrum & no two children would have the same thing in common.

I always try & watch programmes like this from the perspective of someone who doesn't know a thing about autism. Hopefully there will be a few people this morning who are a bit more educated about it.

Watched it and have to say was in tears because so much (not the agression or restraining) was the same as my DS. Heartbreaking. I thought the school was amazing. The kids were all wonderful. Hopefully a lot of people watched to get awareness of how difficult life can be with an autistic child, or any special needs child for that matter.

I watched and had very mixed feelings about it, as someone who is on the autism spectrum and works as an adviser on autism (and has an autistic family too). What amazed me was the schools expecting the kids to cope in a sensory nightmare (highly reflective surfaces, echoing rooms, intense lighting). And there was almost zero focus on the girls with autism, which means that people will not understand the differences. Didn't like the children being forced into eye contact. I know how much brain pain and fear it causes because of the brain's wiring differences (for many of us) - so that's an aspect of 'therapy' I truly wish we would drop. After all, Blind people can't make eye contact but we don't make them do it anyway.
Plenty to think about. I think it did a good job in some ways, but I was just so exhausted looking at the ways they expected some of them to learn or cope. And I still think it was inappropriate for Louis and crew to film into the lad's bedroom when he was in his underwear in there.

Yes I thought that was a mistake as well, Brian should have been given privacy.

Although ds1 would LOVE that school - not the work or table top ABA, but the structure, it's just the sort of place he adores!

The Lamposts film is the next one on Ambitious about Autism.

I liked it more than I thought I would. I liked that Louis seemed very uncomfortable, because that was very real, people are very uncomfortable around children with autism and challenging behaviour and don't know what to say / do. I think it showed how all the parents had become 'experts'.

I didn't like watching the restraint, but DH immediately said well we don't know what the child would have done if not restrained and it had said earlier he hit teachers 2 or 3 times a day. Although the way it was filmed made it look like an overreaction, I do think its important to show challenging behaviour and restraint because most of those families are so isolated or the children in residential that the public don't see thats what autism can really be like. Its important for budget holders and policy makers to see the tough side and not just the kids who can name all the capitals of the world.

I think any force which is more than you personally have to resort to looks shocking. I remember the first time the NHS SALT came and forced DS to pick up a puzzle piece hand over hand and then forced his hand to put it in the jigsaw. And I just remember feeling like she had just assaulted my child.

It brought home to me that my DS is very much in the middle of the spectrum. I can see bits of him in the HF kids, but I can also see bits of him in the severe kids. I can see it still has the potential to go either way.

I did find the jobs section depressing. I am still along way from coming to terms with DS future I think. But that boy with the language well he could be a translator, he doesn't need to be stacking shelves.

Finally watched it tonight - found it hard going but thought that, apart from a few moments that made me very uncomfortable, it was a good programme. Makes me realise how atypical DS is though - he is more sociable than any of the youngsters in the programme ( would have been all over Louis Theroux if he'd played with him) but at the same time more severely delayed than most of them. Though there were bits of Joey and Brian that really reminded me of him.

As you know sphil ds1 is the same :) sociable but severely autistic kids are a group of their own I think.

I thought the SCHOOL were too quick to use restraint. They leapt in when there was plenty of room to stand back

Yeah I thought that too, but on the whole I liked that school and thought the 'mall' to teach life skills was brilliant.

It was quite hard to watch though in some parts.

Nicky was fabulous!

So louis, when are you going to make a programme on what its like living with autism in the UK?

I wish he would, ive had various people off the back of that programme ask me 'so why dont you send DS to a school like that?'

If only

I found it hard to watch, it wasn't what autism is like for us, i know people need to see the bad side (the violence etc..) but i wish they showed the better side of Autism (although Nicki was great). The school was great apart from how quick they were to jump on a child having a meltdown (but then again i don't know the child and the full situation).

I am still summoning up the courage to watch it. I spoke to another mum from dd2's school yesterday, who saw it, and said I shoudn't, as it (from her reasonably limited, but she does see dd1 quite often, but still outsider pov) was not what autism is like for us.

but then, dd1 was severe. she was so shut away, and unable to access anything at all. she ruled the household. she has struggled so much with her communication, from oral dyspraxia through disordered language.

she is at an ABA school, and cannot function (in school terms) anywhere else.

but these days, she is (to the outsider) so much more in the 'moderate' part of the spectrum. do I still count her as severe because I know where she came from (and believe me, I know hw lucky we are that she has 'improved' so much), or because I know how deep her autism runs (if that is not an odd way to put it). she functions reasonably well, is understood by most (although her conversation is bizarre), but she is still severely affected - when she does have a wobble, it still takes months/years to undo it.

she has always been sociable - far more sociable than she 'should' have been. she has always been able to read emotions, again far more than she 'should' be able to.

I get the feeling that I will once more be left with the feeling that 'we' belong nowhere - she is too high functioning to be severe, but not able enough to not be, iyswim.

I'll give it a go later once the girls are in bed, I think.

It took me a few days to summon up the courage to watch too Silverfrog, but im glad I did.

Nicky made up for the sad bits for me! he reminded me of my DS.

Nicky made me smile, he's very similar to dd1 and hopfully dd2 will be similar when she's older, he was an amazing lad (i loved his book).

Silverfrog- most of the children featured on the show were more on the severe side, i think this is why i found it hard to watch as both dd's are high functioning, we don't have to deal with the violent meltdowns, dd2 no longer blanks us when we call her name and both dd's go to ms school. I often feel that we don't belong anywhere as the girls are not that severe but they are not nt either. Its worth watching, the first half is harder to watch, once you see Nicky you will smile (he's lovely).

I actually thought this as alot better than I had anticipated. I heard Louis talk on Radio 5 in the week about it and he seemed caring, compassionate and interested in the children.

He also seemed to really have 'got' the children and their disability too.

I was actually on my way to school to pick up DS who had been very 'rude' to his LSA and called her mean and was now refusing to go into class.

Louis was talking about how these behaviours are part of the social disability and how easy it was to be offended by 'rudeness' if you didn't understand the condition.

I thought - yes! Exactly. It is all part of the same thing - lashing out, not having the means to express yourself, not understanding the 'normal' rules.

Then it also made me think when did I ever expected someone to sympathise with me for being on the receiving end of this 'rudeness'?

You get on with it. Teach. Show the way. It's all part of the job.

Anyway, Nicky was very like DS - down to the things he was saying and his way of reasoning things and his abruptness and his books full of writing about his special interests.

I'm a bit sad that so many people see watching severely autistic kids as something that's 'sad'. I thought all the kids were great, and I thought it showed that even those who are more severely affected are great people with good lives who love their families. The meltdowns are just what you do if you have no other way to get your point across, they pass quickly (and are usually better if your teachers don't jump straight on top of you I suspect).

I was pleased he did show autism as I know it. Rather than just autism as a different way of being.

It was unfortunate in a way that one set of parents still had quite a long way to go to accept their child's condition (I feel for the parents really, as I suspect in 4 years they'll watch that and cringe at what they said).

I'm a bit sad that so many people see watching severely autistic kids as something that's 'sad'

Thats not what I found sad.

Actually I dont think it was the kids that made me feel sad at all, it was the parents and what I recognised in them.

I didnt find watching the kids made me sad. Each individual one was amazing to me in the battles they have within themselves and whats around them. Nicky made me laugh expecially when Louis offered a cuddle and he demanded he wasnt gay!

The parents lying on top of their son didnt shock me to be honest as he is a big lad. DS is no way as severe as the lad but on a major no holds bard meltdown (fortunately getting less frequent) I reach and grab the nearest fleece blanket/quilt and wrap it tight and DH or I hug him tight because the pressure soothes. If DS was as big as that lad I dont know what I would do either.

What made me sad is that we also have so many children with the same struggles and the UK is letting them down....

Which parents did you think had a long way to go to acceptance jimjams? - the ones with the twins.

I think so (although it's all a bit blurred in my head,but I think it was them) the ones who kept saying how awful it was and how she was distraught and devastated. I do think it's entirely NORMAL to feel like that when your children are young and you're coming to terms with how severely affected they are (especially if you're around high functioning kids who are doing so much better). But I also think the way you feel changes with time & it stops being a raw tragedy at some stage. I would hate a public record of my feelings from that time really. When ds1 was 5ish I was overwhelmed with grief and saw his life as a tragedy certainly, now I see his life as every bit as good as his brothers if more difficult. But I see as much value in his life, when he was little I just saw the autism as a disaster.

The problem with showing those grief stages is that sort of paints a whole child's life as being a tragedy in their parent's eyes. When really it's probably just a stage. And whilst the day to day life is still going to be hard, it's not going to be as emotionally difficult for them.

I thought the mum with the adult son living in the group home represented e acceptance you get to. Okay she still had some sadness about the fact he couldn't live with her, but she could see he was happy and she saw him as sociable etc and as having a life worth living.

Of course Louis will have had no idea that the grief stage is usually transient and as it is part of public understanding that a severely autisitic child is always a tragedy.

Hope that makes some sense.

Oh bugger messed up the link above

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. It took me a while but I eventually realised that ds1 knew full well that he's autistic (and the twins were functioning at a higher level than ds1 at their age).

I know what Jimjams means as I was about to post something very similar. There's a sense ( not just on here but on FB and in my RL, including my wider family) that some people didn't want to see the harsher aspects of autism and that somehow when Nicky came along it was a relief. Maybe its natural - people ( me included) always want to see something that reflects their own experience and ( maybe) if you don't live with severe autism it seems quite alien. I thought it was great that the programme showed examples across the spectrum but I'm not sure that Nicky, for example, will necessarily have an easier life than Brian. He was able to use language to convey his anger - talking about stabbing the boy who'd angered him, for example - whereas Joey hit out - but they're the same emotions in the end, just a different form of expression.