Chris Packham Autism Documentary..

[Elderflower14]

Anyone else watching...? I'm very moved watching Ken Bruce's son... Ds2 is autistic and profoundly deaf..

I was also delighted that Chris Packham visited a center with autistic people with learning disabilities. However disappointed that one or two of those people weren’t also chosen to have their stories shown. I feel like it is because it is ‘too difficult’ in the media so they chose Murray who could type words.

I don’t think this is very fair, those people unable to type or speak who are autistic should have a voice, whether that is through showing their interests, following their gestures, their communication - so many ways that this could be shown and captured on film. I can’t remember the last time I ever saw an autistic person with learning disabilities in any media.

Still not a great fan of Chris but because he gave Murray a chance to be represented and also mentioned LD I am warming to him!

I don't think the majority of people who know nothing about Autism are ready for anything more in depth or challenging than what was shown. So on that basis, I thought it was pitched well.

In fairness it did show a far more sanitised version of my personal experiences of Autism, but frankly (as above) most people just wouldn't be ready to watch and understand something that was close to my own lived experience. I'm not sure a TV program showing the sort of issues many of us have had to deal with would be helpful to people who have just received a diagnose for child for instance, it would be terrifying.

I'm really interested in why people do not like the term 'non speaking'?

Non speaking for me seems to fit better with the the non speaking people in my life, they have plenty to verbalise, so I like the term 'non speaking'. I guess things only move forward when we try out and debate and try out what fits. My sibling was given 'Mentally handicap' in the 70's (rightly so that terminology is long gone)...my DC was diagnosed with ASD. ASC is an improvement, but still not fabulous in my opinion.

I think the reason they didnt show the story of someone who wasnt able to direct that story was the idea that chris was giving people a platform to tell their own story, rather than him speaking on their behalf. The whole point wss they were making a video to say what they wanted to say. Otherwise, It would be a video, without someones consent just showing their life as observed from the outside. That might not be the story they'd want to tell.

I think it was fair to pick someone who could communicate what they wanted in the video and mention clearly that others couldnt do that which and show a bigger range in the filler bits led by Chris.

@stregadelcucito

"Non speaking" tells me that the person chooses not to speak or cannot "speak". It would be better if they stated the correct terminology if they found a root cause of their speaking (I.e. Murray has Apraxis of speech). Also I don't believe Murray is non speaking, he had a lot to say but is unable to do this verbally.

Apraxis of speech means nothing to most people though whereas non verbal or non speaking explains that Murray can't speak verbally in a succinct way.

"DD is currently going through assessment at the moment. She's 11 and hopefully will get a lot more support than I ever did"

Just quoted part of my own post there.

In relation to these replies:

"Sadly. No. You will have to "fight" for the support"

"What support?? There isnt any! Not from my experience anyway"

Oh, I have been fighting for years. And we are getting support at last. My comment was in relation to myself, born in 1971 zero recognition and left to struggle until diagnosis last year. So relatively speaking for me, the difference is immense - my daughters assessment comes 40 years earlier than mine age wise. As a single parent, I'm exhausted, and no, it really shouldn't take this much fighting, but I've got people on side now. Eventually.

In relation to the Non Verbal / Non speaking definition;

The word verbal means words.
The word speaking means to speak.

So I guess that Murray's family (and Murray himself) didn't feel that non verbal described him. Because he has many things to 'say'
Whereas non speaking to them perhaps expresses his inability to speak those words out loud himself.

I know there are always differences of opinion relating to correct use of preferred language - and rightly so - it is important to all of us. The terminology changing all the time is challenging too, when we just get used to something being defined a certain way. I think in this instance, I would be inclined to respect that Murray strongly prefers to be described as non speaking and the reason for this was explained in the programme.

The consent of those unable to give it is the exact example of removal of those with severe and even moderate learning disabilities from the world of Autism that is happening throughout the platforms and the rise of the slur autistic moms. There are plenty of “Autistic moms” who have autism but that still isn’t good enough. it’ll get to the point the only news of those with severe learning disabilities is when they are yet again abused in care facilities.
non speaking for me would have the same problem of non verbal, as it goes from unable to selective mutism.

That's so interesting. I am deaf and autistic and I've been genetically tested for waardenburgs.

Turns out that wasn't what it was but I actually have a misspelt gene (COL11A2).

It's faulty collagen production. The geneticist said they are sure there is a link between collagen and autism but they havent found it yet.

Similar to Elhers Danlos but that's a different gene.

@EarlofShrewsbury that is really interesting, I would love for research to be able to dig deeper into different presentations of autism such as hearing loss plus autism, DS has both and also hypermobility and a whole host of other things that seem very connected.

@Boulshired I agree I think the slur ‘autism moms’ is appalling, it’s hard enough as it is.

@RainbowZebraWarrior What concerns me is that ‘non speaking’ is the ONLY term and is to replace ‘non verbal or minimal verbal’ by the current neurodiversity movement - because it does not want to be ‘tainted’ by learning disability, or lower IQ or people not understanding the world. Non speaking is deliberately chosen to project that all autistic people who are unable to talk, completely understand language and are just waiting to be able to type. I think - what is wrong with someone not understanding language?

They cannot help that, there is nothing ‘less’ about this autism that they have learning disabilities or are only able to comprehend basic nouns. That is not a separate ‘other’ thing called learning disability, it is autism and those people who have trouble understanding language, with the processing of it, have just as much right to be heard, be seen, be valued and not have their experience ignored, suppressed and that includes language. If the word ‘non speaking’ is insisted upon (as I have been told by agencies dealing with my DS’ then my DSs experience is gone - my boy could repeat words but for years had no idea what they meant and couldn’t communicate. So he was the opposite for ‘non speaking’.

You can put them on.

Then she’s rather missed the point.

It showed 2 people with autism, that’s all. And as Chris said, the saying is, if you’ve met one person with autism, you’ve met one person with autism.

I thought the programme was very well done. I’m not surprised though, as Chris Packham was involved in it. Lovely man.

My dd also has hearing loss and autism, she was assessed by deaf Camhs and there are definitely links between hearing loss and autism.

When you're deaf you miss a lot of the essential socialisation so some of the autistic behaviours can be attributed to that, deaf Camhs try and assess whether a child is autistic or whether their deafness has caused the social delay and communication difficulties.

I have finished watching this programme. It was brilliant. I am looking forward to watching it next week.

Bump

When’s the next episode available?

It's on tonight

Now watching Episode 2...

We watched it with our autistic son, found it very moving and a really good starting point for discussing with him how much he feels he needs to mask at home (some of the time), we were able to tell him there is no need to mask at home and that we are happy to see all sides of him. Broke our hearts a bit to need to tell him that - we thought he already knew (he does unmask in front of us sometimes).

There's parts of most of the stories that resonated with DS. He found Ethans video presentation very difficult to watch because his greatest difficulties involve sensory overload too. The talk about supermarkets resonated... we have a long history involving supermarkets... He's struggling socially with having moved to secondary and is very isolated at present. I imagine that his classmates just see someone very quiet, very bright (he answers questions) and a bit odd around the edges but mostly harmless. I can tell by his body language when walks up the road at the end of the day, how much has been taken out of him each day. I let him talk to me first which isn't always easy for me to hold back.

We struggle with predictability, he copes better if I can give him notice, plan A/ B/ C, and that's something I struggle to give him because I'm more spontaneous and get stiffled by routine. Something that emerged a couple of years ago was that he jumbled some places up, so you'd tell him you were going to X, turn up there and he'd meltdown because he expected to be at Y.

"Training" him to use the bus home from school is slow. He's technically capable, but he struggles with the predictability of the bus turning up and the extra layer of busyness and noise/ senses. Then there's the frustration of it being far quicker to be picked up rather than several layers of inconvenience. There was one day that I needed him to catch it and he missed it. I got a sweary text message and a string of repetitions which conveyed his state of mind. At least he could express that by text.

I wish there were more episodes of this, it's been really interesting and given us some good talking points, and I think it's been healthy for him to see people with similar issues and other ways that autism affects peoples' lives.

I don't know why todays episode got to me. But it really did. I actually cried. I just felt a sense of.... it's going to be ok. I like how Chris does not shy away from the challenges of Autism. I liked it when he said that sensory differences can be a strength but also can heavily impact the individual. He also appeared to understand the mother's worries about their children's future. He does not represent the Autistic adults online where most shun parents of having "normal" wishes dreams and challenges about their autistic children.

The video of the rapper boy was fantastic. Both videos and their lyrics were amazing.

Hearing how lonely Ethan was at college really got to me., probably because DS is in year 10 and needs to move school at year 11. Shed a few tears when I saw he had found his own group at university.

I haven't finished watching ep 2 yet but reading this just brought a lump to my throat! Sometimes you just need a glimmer of hope that everything might turn out ok

I think both the elements highlighted in episode 2 will resonate with my DS - I’m looking forward to watching it with him.

I really liked that they had Anton talking about routine, and highlighting that a couple of minutes late or early can be really distressing. This the daily reality for so many, including my DS, and it’s such a simple thing for everyone else to try and respect but to support an autistic person.

I’ve been trying to tell this to my friends for example, that when I meet up with them I need a time at least a day in advance because I am with DS. We need to stick to that time and not change it. It’s for DS.