Chris Packham's documentary on autism

[Pariswhenitdrizzles]

Just wondering what your thoughts are on Chris Packham's documentary about autism? Just watched it.

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Nike and others - actually I wasn’t telling you how it is in every situation. But I’m definitely not alone in my circumstances.

And of course I look at it from my OH’s point of view. It breaks my heart to see him upsetting people with NO IDEA it’s happened so friends gradually drop away. And the issue is not that I’m not looking at it from the Aspie POV but he’s UNABLE to look at situations from theirs/mine. He’s a really lovely guy (I married him). It’s like he’s colourblind to other people’s emotional reactions though. So he comes across as uncaring. Or rude. There are two options. Either he’s an arse - and I can definitely say he’s not - or he just can’t read social situations and makes big mistakes that I can’t always undo. It’s definitely the latter.

And the reality of not being able to put yourself in someone else’s shoes ever is that you can’t be wrong. That’s a devastating issue for a relationship. The problem is that again it’s not him being a dick, he genuinely can’t see without explanation and practical examples, which aren’t always possible, why someone else likes something he doesn’t, for example, and why there’s nothing wrong with that.

And I should clarify, that if he finds going to the supermarket, or sitting together with no physical contact watching TV intimate, then that’s totally fine. It’s ONLY a problem when in relationship with someone who has a radically different idea of what it is. So there is the relationship and 100% of the intimacy problem is 50-50 the problem of each party.

I have to say he has amazing qualities too and is a brilliant father. It’s not a black and white situation.

Additionally, from what I understand the autism spectrum is more like one of those colour wheels than a straight line. His presentation of Aspergers may have more encyclopaedic knowledge, less understanding of others and less physical affection than yours. He’s still got Aspergers though. Not everybody is the same, just because they have the same label.

I haven't seen said documentary yet (I will though), but I totally agree with the PP who said that people at one end of the spectrum should not speak for those at the other.

No disrespect to CP, who by all accounts seems to have produced a great documentary, but I don't agree with his comments about a cure.

I started another thread about so called 'low-functioning autism' and its under representaion in the media and the concept of the cure came up on there too. I didn't discuss it on there much because I didn't want to de-rail the thread, but I was not alone in expressing the desire to find a cure. I very much hope that a 'cure' will become available at some point, for those like my ds who don't have the opportunity to live a full life like everyone else.

Saying I would like a cure is not expressing the desire to change all those who embrace their autism and see it as an inherent part of themselves. That is not what I want. What I would love is for a cure to be available so that those who WANT it for themselves or their children, can CHOOSE to take it.

I came away from using the term Autism because it is such a loaded word and can cause presumptions wherever you/your child fall on the spectrum. I now say my son has severe learning difficulties. Many people would not query the desire for a cure if my DS had been in a car crash that caused his learning difficulties but when the cause is autism it does become more complicated and naturally more emotive especially for those with an autism diagnosis.

I thought it was ok, it got DS & hubby talking as autism is in my family. I think his gf is a Saint, I don't think if they get married it'll be a big affair. How he touched the nettles without flinching was

I understand his thoughts on the reconditioning school, nothing was aligned, the idea you can train the children not to be autistic, having autistic friends and relatives that vary on the scale, it does seem macabre.

If he hadn't done the programme you would never guess he was like that.

I felt for his sister when he said 'I just don't care' as others I know are caring. I'm not sure that is an autistic trait.

It was really interesting. I do agree you shouldn't try and change people, or maybe some parents would disagree, especially the more severe the autism.

Is there a support group for parents with autism on here?

I think the problem with a cure would be that there might be pressure for other parents to use it on their kids, even if they don’t want to. It could turn into some kind of slippery slope. I suppose it’s a bit like the argument for voluntary euthanasia. I totally understand why parents of “low functioning” children would want a cure, I just don’t think it would be easy. How would a condition as complex as autism be cured? We don’t even know the cause of it yet. It can have multiple causes. Because it affects everyone differently, I don’t think a single cure can be applied to everyone.

My eldest DS is recently diagnosed after years of being advised he has a pervasive developmental disorder do basically low level learning difficulties over all areas. I’ve not watched it but I will do. Glad to hear of all the partners of people who are autistic gives me hope that my DS May have a relationship become a father etc. On the point of a cure we’ll I guess that would be up to him he’s just turned 16 but for me if it was guaranteed with no risk to his health I’d take it in a heartbeat. He suffers everyday with everything from anxiety to loneliness. He may learn to embrace it one day who knows but right here and now I’d sell my soul for it 😢

I haven't seen it yet, but I work as an ABA therapist and there is nothing brutal in what we do. We don't seek to change our clients autism, we aim to help them learn strategies to cope in a world that isn't necessarily designed for them, in order for them to function as independently as possible. One of my current clients was unable to tolerate a simple shower until we worked with him. now hes doing it daily. this was done gradually and gently and with rewarding him for effort.

I saw it and cried.

Because I recognise my son in Chris. It was like watching him. We are going down the diagnosis line but it's a tough road.

My ds is about to be assessed for asd.

He's not yet four but already monologues on his interests.

“Nothing more than social anxiety”? And do you not have any idea how debilitating that can be?? Please do some proper research (not just reading Mumsnet) before being so bloody judgemental. And high functioning autism is NOT “just” social anxiety, it’s a whole host of other things.

When DS2 received his diagnosis, the tertiary centre in our county was diagnosing Asperger's in children who had not had any speech delay and HFA in children with similar levels of impairment who had had speech delay. That was 6 years ago though.

The relationship with his step daughter is just beautiful.

MePlus Are you quoting what you've seen because HFA is a hell of a lot more than 'just social anxiety', a debilitating condition in itself. Initially it was used to mark the fact that some people with Asperger Syndrome didn't speak early and may not have a 'special interest. So a hell of a lot more than social anxiety.

My DH behaves in much the way that Chris does - so, the programme was really interesting. Made me see that perhaps I am frustrated with our relationship because it is autism-type behaviour and not mean-bastard behaviour.

The only person Chris made really strong eye contact with was his step daughter. I see that with my DH too, he really looks at the kids, me, not so much. Others, barely at all.

Not a lot of point in a diagnosis - but, the programme helped me understand a bit better.

mollie unfortunately Chris' parents are dead.

I was struck as I always am by how far we are as a society from accepting neurodiversity (whether we should accept it is a whole other debate).

I am neurotypical, I have an ex with Aspergers, a sister with autism and severe learning difficulties who is non verbal, mental age of 18 months, doubly incontinent and a daughter who has some Aspie traits.

Dealing with my ex who was diagnosed in adulthood and found his own, in my opinion, unhelpful strategies to manage things he found distressing, is very hard. As other posters have said, he is never wrong. Ever. He never apologises. He is quite capable of lying but he convinces himself it is truth. Talking to him is disconcerting because of the lack of body language or facial feedback. I imagine it is the same for him talking to anyone neurotypical. In the end it was when I stopped adapting everything to him and expected him to meet me not halfway but maybe a quarter of the way that he started getting violent and I ended it.

I stand personally by my belief though that it is unfair to expect that an autistic person should not have to meet people part way, to adapt in some ways. Everyone in the world adapts to things they find harder or are less good at. I don't see why autism should be any different.

My daughter has mild traits but I spend a lot of time focusing on giving her strategies to manage what she finds hard in a socially acceptable way. It doesn't always work but most of the time it does.

I felt Chris was of the 'the world must adapt to me' persuasion, which was unsurprising.

Gilead, that research relates to the US. Whatever happens there, ABA in England is a much more gentle process.

Someone once gave me a striking example of how it had helped her son. He became very distressed by the noise of a pneumatic drill on the journey on his way to school. Obviously her immediate response was to take him to school a different way. However, she realised that he really was not going to be able to spend the rest of his life avoiding drills and he needed to find a way to cope with them. So she and his ABA tutors started doing a lot of work with him around everything to do with pneumatic drills, including showing him pictures, talking about what they do, discussions of other road mending machinery, showing short films of them being used etc - all of it being reinforced through ABA strategies. Ultimately her son reached a point where, far from being massively distressed by drills, he found them fascinating and would actively seek them out.

Some people might think it cruel not to help him continue to avoid drills given the distress they caused. I agree with the mother here that, given that he might come across them unexpectedly at any time, it was far better to help him cope with them. As for the element of getting him to do things he didn't initially want to do, that's hardly unreasonable - after all, not many school children want to learn times tables, but we make them do it. There's no reason why children with ASD should be deemed incapable of learning.

Was he really of the “world must adapt to me” persuasion? He’s clearly tried to adapt to the world or realised he can’t which is why he lives alone in the New Forest.
And so many autistic people have to try and adapt to an NT world. They just don’t know how. There are loads of stories of middle-aged women who’ve gone through life feeling different, but others have just written them off as “weird” or “naughty” and not bothered to help. These people don’t know how to help themselves, either. A neurotypical person in a neurotypical world will have neurotypical issues which a lot of people can help with.

So the person with autism shouldn't have to adapt at all?
I am not saying the adaptation should be one way but I am saying it shouldn't be all a matter of adaptations being made to suit the person with autism.
For example, I was willing to adapt to my ex on a lot of things. Only having food he liked in the house, his own crockery and cutlery set, his own quiet room to go to, quiet time when he got in before he saw the kids, minimising social events he was expected to go to. But he would never adapt himself. He expected me to throw a whole dishwasher full of plates away because one had not come out quite clean. Oh the shouting and aggression followed by withdrawing and refusing to eat when I refused. Was I really supposed to say that was ok?

With any difference, you have to make certain allowances and adaptations if you are not to ghettoise yourself. I just don't see why autism is this unique case that should be different.

As a high functioning autistic, I would love a cure. A pill I could pop to make it easier to navigate people, crowds, smells that make my eyes hurt and that I can taste.
I know my 15 year old is often fed up with having autism, he is high functioning and very aware of his difficulties, and his differences, he would also like a cure, and often talks about it. My other two are not aware of how autism affects them, but as their parent I would love them to have a pain free life, a life like others have. I wish I could be free of the worry of what will happen to them after my death, or if I was struck down with an illness. I'm not saying they can never be happy, or that their prospects are miserable, but they could be better. My 12 year old is not able to dress himself, yet has a reading age of 16. He could succeed at so much if it wasn't for the bastard autism

Of course they have to adapt. They often just don’t know how to, as they often deliberately construct their environment just so they feel comfortable and can’t cope any other way. Most people can cope with change, people with ASD can’t. If they’re out working all day they have to cope with the stresses and demands of a neurotypical world, and are understandably exhausted when they come home. Yes, exhausted. Bright lights, loud noises, having to deal with people you don’t really know, all the office politics for which there is no set guide... the home is somewhere they can have some control over. Having to live with another person can be very difficult, which is why Chris lives alone.
Unfortunately your ex does sound like other men mentioned on the Relationships forum who apparently have AS. A normal couple would be able to negotiate this kind of thing which clearly he couldn’t. Sounds like you’re best off without him, I’m not saying he was reasonable. Sadly people with AS can be very stubborn to say the least. These people often want a relationship but just don’t know how to go about one. They’re not loners, they often want love and companionship like anyone else.