Louis Theroux Documentry

[justine1]

Sorry if I spelt it wrong. Autism documentry on BBC2 at 9pm tonight,I think its a two part. I like his documentries so just recommending it.

[Tally]

Having seen the write-up of this programme, I'm not sure whether I'm going to like it or not. But I'm going to watch it anyway.

 

It is a two-parter, but the second part is not about autism, it is about dementia.

[LancsLad]

Just about to watch it now. Not sure if its about like or not, personally am hoping to become simply better informed and if that means we are all different so be it.

 

Interested to hear thought after the event.

[KezT]

It's only about classic autism, and only in the USA - but it's making me cry:(

[KezT]

interesting comment about the twins - the girl didn't speak until she as 6, so therefore is classic Autism, but the boy cold recite the alphabet perfectly at 18 mths - wouldn't that make him Aspergers according to our current dx criteria? Pity the programme didn't mention that - it would really help with some of the misconception of the term Aspergers"

[justine1]

I do agree Kez,I believe the boy Nicky(I think) is more aspergers and I don't actually recall his mum stating where he is on the spectrum.

 

I was slightly annoyed with the way they deal with Joey's frustration,with restraining him,I think he is desparate to communicate and it appears his meltdowns could be avoided if more was done to use other methods for him to communicate. I saw when at the school he kicked off after the break and it seemed that he was not given a warning,just shown the alarm clock and told "break over", maybe it was edited but did seem ubrupt in my opinion and I believe that could have been the trigger. I was happy to see at the end that the mum opted to keep him in his room to calm down rather than restraining looked much less stressful for both of them.

[Lynden]

It was interesting watching Louis actually - he was definitely a lot less anxious and nervous around the kids towards the end of the documentary. I think it was quite an honest documentary in terms of what it can be like living with severe autism for some families.

[Tally]

It wasn't like I expected and it revealed to me how little I actually know about severe autism.

 

It's probably inevitable that Louis would have been nervous at the beginning to meet children who can be violent, for example, the boy who lived in residential care because he burnt down the house aged 8 and attacked his mother. He just seemed to continually eat and the mother made no attempt to stop him, but given his history maybe she was scared of him. But it was interesting to see Louis bond with the children he met and become less anxious around them.

 

I thought the mother who lay on her son was odd. He didn't seem that out of control and it did look as though sitting on him only upset him more. The "break over" bit did seem abrupt, and also there was a loud alarm which might have been what upset him. It just looked like he was tantrumming at not getting his way. I don't know if there was more to it all than was shown

 

Nicky seemed quite judgemental about other people, which I think would cause him serious problems socially. He seemed to come from a large family, so it wasn't like he wasn't mixing with others. It was sad that he kept making the violent threats, as he did not seem like a violent person at all. They did show his mum explaining that he can't talk like that, but I felt someone needed to be much harsher with him and explain that saying things like that is illegal and could get him into a lot of trouble.

 

I was impressed with the school, especially the shopping mall where the students can practice daily living skills and workplace skills.

[chris54]

the boy cold recite the alphabet perfectly at 18 mths - wouldn't that make him Aspergers according to our current dx criteria?

 

No, were as delayed speech development is seen to exclude a diagnosis of Aspergers. The presence of normal speech development (or advanced) does not mean that a diagnosis of Autism would be Aspergers, there are many other factors involved.

 

I watched it at work on BBC iplayer. We (At work) would not be allowed to use the restraints used, What was that mother and father doing hold that boy down?

 

It would be interesting to know how the school shown reflects the over all provisions of special schools in America.

 

Over all I would give the program a cautious thumbs up.

Edited April 20, 2012 by chris54

[Sally44]

I watched most of it too on iplayer.

 

It showed how hard it can be for parents every day, and how isolated you become.

 

And it showed how Louis did not know what to do or how to communicate with the children at first.

 

It was also interesting to see how some of the siblings reacted.

 

I also felt that the boy that was restrained had little time to understand and deal with transitions. I also wondered if he actually liked the sensation of deep pressure [which is what they used to restrain him], and how that could have built up a negative cycle of behaviour.

[chris54]

We, at work, are only allowed to restrain someone if they is an immediate danger to them selves or others, and then for only as long as the danger exists. Restraint is never used as a punishment or as any form of therapy.

[Sally44]

WhatI mean by them using deep pressure, was that both at home and in the school, they used to get hold of a mat, and get him lying down on it, and then they would lie or sit on him. This is essentially giving deep pressure input, whether that is the intension of not.

 

His mother said he needed restraining in this way at least once a day, but often frequently.

 

And if he was struggling with transitions or instructions, this could become a predictable routine that helped him make sense of how confused or frustrated he felt. Then after he had calmed down they gave him things to 'sort', which was one of his obsessions which he loved to do. So it seemed to me that that was a reward?

Edited April 20, 2012 by Sally44

[Sally44]

I also didn't find that the staff had much empathy with the students. For example the meeting with Nicky, where a group of the school staff were talking about his move to another school. I felt like they dismissed his anxiety and concerns, rather than addressing them. But maybe they were addressing them off camera.

 

I also questioned how much the children were actually learning. And whether they really were expecting these students to go out into the real world and hold down a job? I could imagine Nicky getting some kind of work - but not the others.

[chris54]

WhatI mean by them using deep pressure, was that both at home and in the school, they used to get hold of a mat, and get him lying down on it, and then they would lie or sit on him. This is essentially giving deep pressure input, whether that is the intention of not.

 

I don't know about other organisations, but in ours that would be considered assault, and if practised would lead to disciplinary action.

 

I don't realy see that any of the young people we saw were likely to ever live independently. And once or twice, the work cure was used.

Edited April 20, 2012 by chris54

[jollypig]

i found it interesting and can relate to elements in most of the children filmed but the bit that got me was the twins mother saying she gets no enjoyment out of them, i found that really hard to understand .

[chris54]

the twins mother saying she gets no enjoyment out of them,

 

If I look at some of the residents at work, I can understand that.

 

As much as I get/got enjoyment from my son, I do feel a sense of loss for the fun times we never had with him as a baby and toddler.

Edited April 20, 2012 by chris54

[LancsLad]

There is a lot I could say about the programme but will stick to one point.

 

The more I see examples of autism in individuals either on TV or in real life the more I see of myself in these very interesting people. I once held a view that there was such a thing as 'classic autism' and this was somehow different to what I had as a condition. My views on this have change recently and I knew last night programme would either reinforce that new belief or would be a force against it. The truth is for me it really reinforced it.

 

I very much see that myself and all the children and young adults featured in the documentry are on one broad spectrum. One end of the spectrum might be termed high functioning the other low functioning but even this is highly subjective and only relative to the environment we are in. Along this spectum there might be a whole range of labels and similarly for me they serve no function, they may for a professional working in the sector, but I am concerned about living a life and as such they a pointless. If I had to define my condition I would see it as a collection of dots related to my abilities and symptoms scattered over an area of the spectrum. When I watched the documentry I could see massive overlaps with some of the idividuals featured. I know if I was on the programme I would come across in many peoples eyes as being the most functional and the producers had created this role in the programme by focusing on one individual with whom I suspect I share a lot of spectrum overlap with.

 

What the programme left me with was a strong feeling of connection. I know if we could map our spectral scattter diagrams then there were some individuals on the documentry where there may be no overlap on the surface so do we have something in common or not. I can remeber as a teacher on a visit to a satelite special school lying on the floor of a sensory room totally at peace and looking into the face of a young child diagnosed with 'classic autism' and feeling a strong connection which I put down to how we felt about the environment we were in as thats all I could pin it on. After last nights programme I think I understand that the connection was a lot stronger than that. I now feel strongly that the connection is there because I share elemnts in my life which overlap with others on the spectrum and in turn so do they. Together these experiences because of diversity and individuality create overlap and as such we are linked together if we choose to see it this way. For me personally I find a lot of comfort in that, I do not feel better or worse than anyone else just I am what I am and this is where I sit in the scheme of things.

 

Just a few thoughts.

[Grace]

I also was shocked how quickly Joey was restrained and I thought that you were not supposed to restrain that way because it would put pressure on his chest and affect breathing.

 

However, did you notice at the end, a comment was made about a new technique (or similar) which was when she allowed him time to calm down in his room. Makes me wonder if Louis had some kind of autism advisor with him, who looked at the films as they went along and as a result Carole, the mum was given advice on a better way. I must say though, she was calm and loving towards him, so I think her technique was just wrong and she demonstrated this by her willingness to change it at the end.

[Pancakemaker]

My mate phoned me saying she'd cried the whole way through,so I watched it.i thought the twins parents said a lot of things about that related to how a lot of parents must feel,that was the only thing that made me tearful,but saying that she didn't get any enjoyment from them,I also find hard to understand.did anyone see Melanie Sykes talking about her sons Autism on This Morning?

[justine1]

My mate phoned me saying she'd cried the whole way through,so I watched it.i thought the twins parents said a lot of things about that related to how a lot of parents must feel,that was the only thing that made me tearful,but saying that she didn't get any enjoyment from them,I also find hard to understand.did anyone see Melanie Sykes talking about her sons Autism on This Morning?

 

Watched Melanie Sykes I did like her idea of the poster of signs for autism similar to the meningitis posters.

[sesley]

just watched it. its interesting fact that the personality of the person with autism is interwoven and it can't be undone. and the parents all say the same thing to cure them would be to cure the person they love which would change who they are and why they love them. I feel my son is who he is and i would not change who he is for anything. I know some behaviours are distressing and frustrating,but they are using strategys if they can to over come the challenges they have, the progess is slow,but steady and the same for us. Small steps at a time and we are looking back and realise we have come a long way in development and with a positive attiude we can have a good future .

Edited April 21, 2012 by sesley

[darkshine]

So is this programme worth watching? (I missed this post at the time)

[Haze]

I did watch this programme with my hubby and were in tears we have just had our son diagnosed adhd and aspies and probably dyslexia and we were horrified at the way the staff floored joey in school if that was my son doing this action would of sent him into further distress and a severe meltdown i understand no one wants to be hit but surely not this way and im sorry but i wanted to smack his parents there is always a way im sorry but it was clear communication was missing and to again floor him sit on him and then pour water down his throat was surely dangerous OMG im now so worried is this how staff restrain a austistic child if so then the first teacher or person to do this to my son i will personally charge with assault truly shocking this did not show autisim in a good way. Autisim is bad with the meltdowns but there is many good points and laughter and i think a programme needs to show the bad and the GOOD

 

hazexx

[chris54]

This documentary was set in America were the approach to Autism is different to ours. There is a general belief there that Autism can be cured and it is the fault of the parent (and carers) if a child is not cured. So there is a lot of pressure on parents to go along with what the professionals say. Also you have to remember that the American approach to all things medical is the more interventions there is the better. If you have ever seen what they routinely do to new born babies you would not believe it.

 

I would be surprised if the sort of physical intervention used in this program was condoned by any organisation in this country, as I said before, any practitioner using such methods would be leaving themselves open to prosecution for assault.

[sesley]

I agree lots of American attiude is looking for someone or thing to blame and find a cure. The idea of special schools set up with autism trained staff is a good one,for the people that do actually need them,but my son is doing well intergrated by a excellent support for learning unit, into mainstream schooI,so he does not need special schools. Which is a good thing for, interacting socially is important to teach them how to cope, being isolated is not always a good thing. I wish Louix whats his name filmed identical people in the UK .and showed the great achievments of UK people with autism in a positive light as well as the negatives.

Edited April 26, 2012 by sesley

[darkshine]

I decided to watch this program - I noticed something while watching it - I feel like I understand what they were thinking from their faces - and I wish I could ask because I don't always know what people are thinking from their face I can only usually narrow it down to possible range - unless people are angry but sometimes people pretend to be angry but usually angry is clearer. Did anyone else think this? (that they knew what the kids and teens were thinking or feeling when they were reacting to someone or something or just anyway)

[JeanneA]

I did darkshine, I haven't seen the programme in full as yet as I have downloaded in from iplayer tonight as I missed the actual programme when it went out. I could see my son in a couple of those youngsters, it was quite an eye opener.

[darkshine]

I hoped someone might - its weird to me because I don't always know what people are thinking or feeling. And I can't imagine what they feel or think without additional data or facts. But with those youngsters I felt that I did understand. I can't explain it much better than that

 

I've watched a few of Louis' documentaries (if not all of them - I'd have to check) he always seems uncomfortable or something, which for some reason amuses me and the questions he asks are sometimes irrelevant or silly... Is that way it makes good viewing? That they put him in uncomfortable situations where he asks dumb questions and looks uncomfortable?

 

I'm not sure of my opinion of this show... I don't have a negative opinion about it though - I just don't really have descriptive words or sentences for it right now. The fact I watched it all says something.

[JeanneA]

I know some of you on the forum thought the restraining techniques were upsetting but I could relate to it as I know what I went through when Glen was living at home. He was extremely physically aggressive at times towards himself and me, I was scared many of times and I had to try and hold him or get him to lay on his bed and hold his arms down (if I could as he was so strong) just for a few seconds. The ball blanket (which is great for a ASD child with sensory issues) was on top of him at this point and then he would calm down and stay under the blanket watching a dvd for a while and would then be fine again.

 

Louis did look uncomfortable Dark I thought that particularly the first part of the documentary but he seem to be more understanding of autism towards the end. I would like for him to a documentary in the UK it would be so interesting to watch.

[darkshine]

I didn't think the laying on the kid thing was so bad - it seems to make sense if you are gonna get attacked or the house wrecked otherwise - and anyway - they changed the method at the end of the documentary.

 

I though the show seemed quite balanced as all those kids and teens had different ages and different abilities and different signs of autism.

 

And it got the parents opinions too.

 

 

A UK version would be interesting to see the difference.

[JeanneA]

Yes it would be great if a U.K. version of this documentary was made, it would be nice to compare parents of autistic youngsters in this country to the U.S.

[darkshine]

Sure would - cultural differences and all that jazz - we have a different history of psychology to America - and even to different parts of Europe - so UK version would indeed be interesting.

 

I noticed that quite some of those parents were very defeatist - as a negative person myself - with moderately negative parents - I wonder what different attitude makes on the children. If they could see that there's possibly more hope than they think there is - would it make them more positive and then help the child more because the positivity in people seems to make them more determined and more focused.

 

The most positive mom was Nicky's - but I also noticed that the older guy's mom was quite realistic - I can't remember his name! (He said "yeah" a lot). Obviously he is at a different part of the spectrum to Nicky but I got the feeling that his mom was the inda woman to have done her best.

 

Joey's mom looked worn down - but she was encouraging of him. The twins's parents really seemed like they were - I don't have words - defeated? down? And I got the feeling that the twins could achieve more - and in doing so provide pleasure - it seems judgemental to me to be saying this - I haven't a clue how hard it must be to look after these children - but it is what I felt - I felt like they were missing the good bits by grieving over their life before or something.

Edited April 27, 2012 by darkshine

[chris54]

Joe in the class room. Watch it carefully, you will see that when the buzzer went and he had to change activities, they were expecting a negative reaction. His teacher was already adopting a defensive posture and other staff were there ready to step in. First, as I have already said I don't agree with the way physical intervention is being used. The second point, if they know that these sudden changes to set him off, why have them, why not have a run down time at the end of an activity. It almost seems to me, and there is a reference to this, that as Autistic children find change difficult, we will make the changes as abrupt as possible. In doing this they are provoking a reaction and then it gives us "something to do". Almost as if by confronting the negatives they will defeat them.

 

The boy twin, his father said something like "I only have to say NO and it sets him off", Well don't say NO, I don't mean give in, I mean don't use the word NO.

 

We at work do a lot of work identifying triggers and avoiding them, that is basically how we work, and by recognising when someone is becoming agitated and (Trying not to use any technical jargon) defuse it before it happens.

 

We have one resident who is a sweet as pie, unless you invade her space, then all hell lets lose. For instance, you only go into her room if you are invited, with her it is a very subtle wave of the hand, she is a selective mute, I always double check that I have the right interpretation of what is meant. And keep a dialog going, not easy when the person you are talking to doesn't talk back, its all done with facial expressions and body language.

 

Twin boy in the car, well what did his mum expect, Not only do we have all these strange people in the car, we are not doing what we normally do. How much preparation for the change there was we don't know so cant judge that. When he hit himself in the face. The expression on his face, two possible interpretations, one of surprise that it hurt, another, who's watching me and how did that affect them, provoke a reaction.

We get this behavior at work, one particular resident will inflict injury on themselves in order to get a reaction from staff. It is hard to stand there and watch someone banging their head on the wall and not try and stop them, but experience has shown that this only escalates the problem. If it is ignored it soon stops and in the long term the frequency of these incidents has dramatically declined.

 

Its all about knowing your resident, we have one who will raise their hand as if to hit you, if your attempt to stop them then it sets off. Me, I give a "look" and a "Word" and they back down, (Usually)

 

 

Just looking in without background it is very hard to judge. I would say that, in my organisation at least, the approach is very much one of doing every thing we possibly can to avoid any conflict. In the documentary, It just seemed that some of what we saw was too confrontational for me to be at ease.

Edited April 27, 2012 by chris54

[darkshine]

Good points Chris - I though similar things and I noticed all the examples you gave (about the show) I just couldn't write it like you did!

 

I think sometimes - expert or not - it is easier to see things from the outside looking in - than the other way round - do you think so?