Chris Packham's documentary on autism

[Pariswhenitdrizzles]

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

I think a lot of people when they use the term non verbal are talking about children who also have limited/no understanding rather than only non verbal or struggle with communication.

Gilead, the examples you have given like hearing aids etc help those people manage their difficulties and be active in the wider world. I have no problem with any of them.

I have no problem with an autistic person using strategies to help them manage. I teach my daughter many.

The only thing I have a problem with is someone who is autistic telling me I have to accept and adapt to everything about them and they don't have to make a single concession to me.

Autism isn't the only state of being that makes navigating the world hard.

And yes my ex was/is a knob. There are nice people with autism and not so nice people with autism.

And I do understand as much as an NT person can. I adapted my life to my ex and I think that was the wrong thing to do for both of us. I adapt to my daughter but I also expect her to try very hard to adapt to me in some ways. I have adapted to hundreds of autistic people I have worked with but I also teach them strategies to help. I am so fascinated by autism I am applying to do a PhD on public autism policy.

I just don't agree with the notion I seem to see expressed a lot that autism is somehow sacrosanct.

This uncalled for horribleness just shows the attitudes that even HF people with ASD face, just because they may be a little unusual.

Yep, that's my experience.

I watched CP's documentary in floods of tears. I felt his pain because it's like my pain.

Trying, trying, trying to fit in, be invisible, trying to avoid the cruelty.
At 49, I'm still failing, I can't get it right. Fucking 49. I'm still the clumsy girl was was told at 12 "You're such a brainy mess"

If only people would try to understand and accept the difference.

I really liked it. He didnt seem that out of the ordinary for me or my family, i just thought he seemed lovely, and really lucky that his SI was something he could make a career out of. I would so love to live alone in the forest like that.

The only thing I have a problem with is someone who is autistic telling me I have to accept and adapt to everything about them and they don't have to make a single concession to me.
I don't think you realise quite how many concessions and adaptations autistic people have to make on an everyday basis day in, day out, just to get through living in an NT world. It's exhausting. It's why so many women are now being diagnosed later in life - having pretended for so long, having adapted to try and fit in, having acted a role 24-7 for years, you get to a point where you just don't have the mental & emotional capacity to do it any more and that's when you really start to struggle. A PP said how she was teaching her daughter strategies to fit in - that's all well & good but you're basically expecting your daughter to be a full-time actress, playing a part constantly with no respite. It's a safe bet that when she hits middle age she'll struggle because she can't carry on playing the part but equally she's lost sight of who she really is. And you won't be able to pick up the pieces for her then.

I am so fascinated by autism I am applying to do a PhD on public autism policy.
I'm concerned that someone without Autism is again speaking for the autistic community, someone who has clearly demonstrated a lack of understanding based on a bad experience with a partner. Yes, you said your dd is autistic, but you expect her to make adjustments for you. Do you mean adjustments, or coping strategies? There's a difference. What concessions do you make for her?
You've already muddied the waters by citing your ex partner's OCD as an example of his Autism. It isn't.

This is why it is difficult to view Autism from one angle, it is not about toilet, language but much more. It is being trapped in four walls, you will not meet children like my DS as he is no longer in society just as his peers in his class. Many parents like me do not attend groups or even forums like the SN board. I arrive at school once everyone leaves and leave before they arrive as no escort is safe with him we no longer can use school transport. I currently have a fractured eye socket and both shoulders torn and these were not done out of anger but his inability to know his own strength and there are more violent children than him in his class. Of course I would not risk a cure without medical assurances but that still does not mean I do not hope for one.

Exactly Gilead!

Boulshired

MartinRohdesBellybuttonFluff thank you for the link to that programme, I couldn't remember what it was called. Obviously ABA is controversial but I couldn't help smiling at Jack sitting anxiously waiting for his sausage and chips and his evident pleasure when it arrived, he seemed much happier than he was at the start of the programme and to me that seemed very worthwhile not because I don't think people with ASD aren't as valuable as anyone else but because he seemed happier and so did his mum.

Purpleangel - forgive me if I’m being abrupt, I am now officially an aspie, but you appear to be projecting your own experiences with your partner onto all people with autism.

Clearly you and your partner couldn’t make it work but that does not translate into you being asked to accommodate ALL people on the spectrum without them making any effort at all, ever.

I am making an effort all the time to try to adapt. I have Irlen Syndrome so being around fluorescent lights is very difficult for me. So if we met in a place with artificial lighting, I would be making a huge accommodation for you that wouldn’t even occur to you that I’d need to be doing. So if on top of that it was noisy and I was anxious about our social interaction and THEN when I wasn’t as sociable as you liked and you said I wasn’t trying to meet you half way, well, I’d probably walk out and then cry because I’d take that to heart.

Anyway, we’re all different and I’m sorry for your relationship difficulties.

I thought it was great. I like that it was more ‘his story’ than ‘learn all about high functioning autism’.

At the end of the day no-one is owed the right to be in a relationship. If it's not working, if you are unable to make it work, then its fine to get out. You don't have to stay because your partner is autistic/non-autistic and can't meet your needs.

It isn't just my experiences with my partner, it is my experiences working in special educational needs for many years with specialist autism schools, children with autism in mainstream schools and home ed children with autism on ABA.

With no other difference or disability that I can think of is there an expectation that it is unfair to make any demands of that person. Why is autism that exception?

Doing a PhD on public autism policy is not trying to speak for autistic people. It is having an interest in understanding how the autism rights movement has influenced policy, how effective this policy is, how it varies from country to country. Ultimately with a view to working with all communities for a fair policy.

One viewpoint is the viewpoint being espoused here by Gilead et al. I don't currently share that viewpoint but I am far from having the more extreme viewpoints on the other side. I want to investigate those viewpoints. Maybe I will change my mind.

I do think it is a slippery slope though to say only autistic people can speak for autistic people. Can only black people speak for black people? Women speak for women? Mothers speak for mothers?

And my ex very definitely didn't have OCD. It was a combo of ASD and a personality that felt a strong need to be in control.

I teach my daughter strategies to manage anxiety in a way that doesn't make her stand out (she hates standing out) and stop herself hitting people. What is wrong with that?

I thought it was great too. Again, it was his story rather than speaking for any other autistic person. When I used to watch the Really wild Show i though CP was so cool! Probably cos of his look rather than knowledge re the animals.

I watched it twice, in tears. I then made my husband watch it and finally my DD, who at the age of 17 last January was diagnosed with ASD. It was such a brave, honest account and I saw many parallels with my DD’s experiences. I hope it gave her hope that there is light at the end of the tunnel. It will never go away, and you will probably never fully exit the tunnel, but there will be more light, and the journey through the tunnel will be easier.
to everyone personally dealing with living with ASD either themselves or supporting a loved one. It is emotionally exhausting for all concerned.

I do think it is a slippery slope though to say only autistic people can speak for autistic people. Can only black people speak for black people? Women speak for women? Mothers speak for mothers?
Generally, yes. Just because it doesn't always happen doesn't mean it shouldn't.
Why shouldn't those of us on the spectrum be involved in policy decisions regarding us. Why can't we campaign for things that make our lives easier? Given what we can, have and do to create a society that is in many ways easier for all, or more entertaining, then we should be allowed to argue our case.
Your husband's problem with wanting to throw out a dishwasher load is not an ASC problem. His problem with wanting his own plates, not an ASC problem. His problem, but not an ASC problem.

As for working for years with people on the spectrum, great, and thank you. However, working with us doesn't give you the right to speak for us unless asked. Support yes, but that's as far as it should go. It's not a slippery slope to anything, it's asking for a basic human right. We identify as a discrete part of a society, we have needs that could be met with minor changes; some parts of society are in fact trying to assist with this, but we would not, unreasonably like a few more changes. We are allowed, and yes entitled to campaign for such things. Most of these things make absolutely no difference to neurotypical people at all.

^^This. And they're pretty sidelined already in the "autism is a difference not a disability" narrative.

zzzzz I see your point and would suggest that in that situation the primary carer obviously have a voice. I spoke for my children until they were old enough to make the informed choices that I had been making on their behalf. If a child is not going to get to that point, for whatever reason then it's obvious that somebody needs to voice their needs. However, those of us with AS and HFA who are capable of making our own informed choices and should be given the opportunity to do so.
I also accept that purple does have a dd on the spectrum. But people who are 'fascinated' by autism seems to me to be a touch off. I am an old and seasoned campaigner for disability rights, and very much support the rights of each and every community to state what their fundamental needs are and to have those needs met, I believe that a parent who speaks for a child is part of that community.

If my husband was making public policy, he'd make it to suit him and his needs - it wouldn't occur to him that other people might need something different.

It'd be a total disaster, but, he'd be really pleased with the set up.

It'd be a total disaster, but, he'd be really pleased with the set up.

One would assume, as has happened in the years since I have been campaigning (since the 70s), that policy would be a consensus!
Fantasy policies though, now there I could have some fun!