Chris Packham's documentary on autism

[Pariswhenitdrizzles]

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

I'm a high functioning autistic with three autistic children. I work hard to get their needs met at school and any other environment they happen to be in. I balance all their individual needs by having different zones in my house. I sometimes wonder if part of my reason for dong this is because I also need control over my environment, and my environment inevitably includes their potential melt downs. That probably sounds very convoluted. Basically how my children are emotionally has a huge impact on my ability to cope. So I control everything

Brilliant points, well made, zzzzz

"This uncalled for horribleness just shows the attitudes that even HF people with ASD face, just because they may be a little unusual.
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Yes I noticed this the other day. My son is HFA and has had guitar lessons for some years with the same teacher. His guitar teacher was talking about someone who worked at a local music centre or some such, and saying she was 'mental' or words to that effect and I asked what he meant and he said 'she must be on the spectrum or something'.

We have not ever said to him 'DS is autistic', but casual comments like this sort of bring it home.

If my husband was making public policy, he'd make it to suit him and his needs This is what I was thinking, the people I worked with in residential care would probably make very different policies to someone like CP and I'm not at all sure they would reach a compromise.

I am not saying I want to make policy for autistic people but that I want to do research that will inform it in the future. Of course autistic people (who are able) habe the right to lobby and to speak for themselves. But public policy has to weigh up competing needs which is why I find it fascinating.

Am really impressed with the service in Wales. Worth looking at public policy here. They’re supposedly leading the way in the UK. I’ve only experienced it as an adult so can’t comment on children’s assessment services but the services available to me are more than I was expecting.

gov.wales/topics/health/socialcare/asd/?lang=en

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?

So you’d ask a person in a wheelchair to get out if it and walk up a flight of stairs?

You’d ask a blind person to drive a car?

You’d ask a depressed person to snap out of it and organise a nice happy party?

Autistic people do not demand that people make endless allowances for them. We work tirelessly to fit into a hostile and unpleasant world that the neurotypicals have created for themselves.

In fact, we don’t even get to fit in, we just isolate ourselves. We’re not part of the world.

Very few effective allowances are made for autistic people, not in a consistent way anyway. Not in schools, shops, work places, apart from a very few exceptions I can't think of anywhere I feel comfortable.

People with a limited understanding of autism will often not want severely autistic people to be part of the community, because it puts them out (if you want evidence of this start a thread about disabled people making noise in the theatre, or about leaving one child out of party plans because of their behaviour), or if the person is so-called high functioning, we're not really autistic and just need to make a bit more effort.
For many autistic people the only place you can let go and be yourself is at home, but that is often not brilliant for family, when you need time alone and opt out of family life for a bit, or you get stuck in a special interest and can't focus on anything else, or you can hear the noise that people make but can't make out what they're saying without making a massive effort, when you've already made a huge effort to listen, look, react appropriately and you just need to stop for a bit.
It's difficult, and no, the world and the people around you don't make exceptions. You're either too disabled to take part, or you take part whilst having to meet others' rigid expectations.

Very few effective allowances are made for autistic people, not in a consistent way anyway. Not in schools, shops, work places, apart from a very few exceptions I can't think of anywhere I feel comfortable.

People with a limited understanding of autism will often not want severely autistic people to be part of the community, because it puts them out (if you want evidence of this start a thread about disabled people making noise in the theatre, or about leaving one child out of party plans because of their behaviour), or if the person is so-called high functioning, we're not really autistic and just need to make a bit more effort.
For many autistic people the only place you can let go and be yourself is at home, but that is often not brilliant for family, when you need time alone and opt out of family life for a bit, or you get stuck in a special interest and can't focus on anything else, or you can hear the noise that people make but can't make out what they're saying without making a massive effort, when you've already made a huge effort to listen, look, react appropriately and you just need to stop for a bit.
It's difficult, and no, the world and the people around you don't make exceptions. You're either too disabled to take part, or you take part whilst having to meet others' rigid expectations.

The effort that we put in makes us exhausted, sick, overloaded, intensely uncomfortable and causes a lifetime of acute anxiety and a fear of the future and of what lies in store for us and our children, if they’re autistic as well.

We are often unable to hold down a reasonable level of employment so often struggle financially as well.

No or few friends leads to isolation and loneliness which leads to ill health. Sometimes we can’t access healthcare because we can’t communicate effectively when dealing with Doctors and hospitals.

A great many of us lead absolutely shit lives and face isolation and premature death (this has been researched).

Add all this to the endless criticism and rejection - often from family - and you still think that we need to make more effort and be less demanding?

Incitatus YES YES YES.
My self esteem is terrible. I have suspected ASD (on waiting list for an assessment) and my biggest issue is socialising. There are some people I've met who I've really wanted to befriend/get to know better at least and I have not been able to bring myself to, because the little negative voice in my head goes "oh you won't have anything in common" "they'll think you're too weird" etc. Have I had a relationship? Have I fuck. Not even a fucking kiss. I'm only young, but most people my age have at least had something.
I'm lucky in that I don't have major sensory issues with stuff like light and sound and clothes like some do. Seams and labels are a normal part of clothing, but for autistic people they are often incredibly irritating and, yes, painful. Even something as banal as shopping is difficult for many. The constant chatter of other people (which you cannot filter), the loud humming of refrigerated sections, the beep-beep of the checkout, the bright lights, the colourful packaging... it's all very overwhelming for many with ASD.
If you disclose to your employers (provided you can get a job), they can make reasonable adjustments, but they cannot control everything. Most jobs require you to speak to other people to some degree. You often have to dress quite smartly. You'll have a lot of tasks to do. Not to mention all the office politics...
Everyone needs to decompress after a day at work, but ASD people have had a far more intense day emotionally, because of all their sensory issues/coping strategies on top of job stresses. They don't demand people make allowances because they've been having to do that themselves all day. The world is designed for the 99% of the population who are neurotypical.

I don't think I have this but I share his pain on the sensory issues, it's held me back from all kinds of things.
If they could offer a cure for that, I'd take it. I've had a few workplaces give what they considered advice, because it's held back my career. But none of that advice works and being alone in a quiet place solves them. Workplaces have no tolerance for anyone struggling with sensory overload, I doubt they will ever build in policies.

Its not a way in which I can adapt, I really would if I could.

toffee & incitatus your posts really resonated with me. I'm a suspected aspie too afraid to even ask for a diagnosis because I'm afraid of how my horrible ex and my narc mother will use it against me. I'm worried I'll lose my children if I'm classed as having a disability. I know that's probably ridiculous.

User I would suggest you use the NAS helpline.
Lots of disabled parents look after their children. Social Services couldn’t possibly look after all the children of disabled parents. It is no grounds for “taking children away”.
ASD is actually pretty common among parents, I can think of several excellent parents who are or are probably on the spectrum. (I can’t actually think of any bad ones - but that’s more that I struggle to think of bad parents that I really know.)
Getting a diagnosis as an adult can be hard and you do need to think about why you want one and what it will do for you.

User, I got my dx at 48. Four children, three with an ASC. They're with me.

Thanks to the people with ASD/Autism who are able to share their experiences on here. It's really helpful.

My DH is, I'm convinced, ASD. Amongst other behaviours, the isolates himself, can't cope with noise, mess and lots of social situations. Your stories, and CP's programme, have really helped me see things from his POV.

However, my reality is that I'm living with 3 kids who have a dad who snaps, ignores and belittles them. Even if he doesn't mean it, it's pretty fucking wearing. I've learned to cope, but, they are just kids.

I get the "why is it always about accommodating the ASD needs?" comments, because, everyone has needs, and living with someone who is probably definitely AS feels like his needs trump ours all the time.

My DH is bright, super bright. Yet, he CANNOT learn that if he speaks to me for 5 minutes a day then I can cope. Without that, I feel completely irrelevant. And, the truth is, for much of his day and life, I am irrelevant to him, he's too busy prioritising his stuff and me and the kids get the provisions he makes for us (earning money to pay the mortgage, sharing his interest with one of the kids) - but, literally, nothing else. He's not able to respond to a new or difficult family situation, he just carries on the way he always has.

So, I think there's a huge conflict between what an ASD and an NT partner need.

Living in a cottage, alone in a forest would make my DH happy too. Cos, the family that he wanted, is, by it's very nature, noisy, messy, unpredictable, demanding and not easy for him to cope with.

It's knackering for us both.

100% with you, stealth

I feel hugely sorry for the difficulties my father has and has had as someone who (in retrospect) is very obviously HFA. It's like he lives in a world where everyone got the instruction manual except him. But I don't think people can say that neurotypical people reacting to the behaviour of those with Asperger's are always "shitty". Neurotypical people have limits just as autistic people do.

Maybe my father couldn't help behaving abusively when I was a child (I think he just did not understand the impact of his words or the unreasonableness of his need for control), and I certainly have cut him a huge amount of slack in his adulthood on the basis of his Asperger's. But by the same token, I couldn't help becoming permanently emotionally damaged by his behaviour, and I'm not the only one. It would not have been "shitty" for my mother to get me and my siblings out of there without looking back.

Another one with an ASD diagnosis, and am a single parent with all my children living with me. You don't have to tell anyone your diagnosis if you don't want to.

In spite of what I’ve previously said, I do think that if someone is part of a family and has ASD, they can learn to make some compromises. People with ASD do find dealing with change difficult. They also often want a partner and even a family, because that’s an innate part of being a human. NT couples can struggle with having a baby in the house, so it’s going to be much harder if someone has ASD. So, if you did make changes, I would advocate doing things one at a time. I’d probably also say to write them down; I’ve seen anecdotes where people with ASD have to have Post-it notes around the house reminding them to do various things eg brushing teeth/hair/etc.
Hopefully he does love you, even if it’s not always obvious, so that he may have more motivation to change if you outline exactly why you’d like him to change. If you do go for counselling, try and find someone who has experience of ASD, otherwise they will not know how to help.

You don’t have to tell anyone about a diagnosis if you have one, but at the same time it can be useful in various scenarios if the diagnosis is known beforehand. Then problems can be anticipated in advance.

I wouldn’t say “we” asd folk want everyone bending to meet our needs. It’s not that long ago when young people were institutionalalised and spent there entire lives there.

I was only diagnosed two weeks ago at the age of 40 and have spent my whole life thinking there was something wrong with me because I couldn’t fit in like others can.

So, no demanding going on here. My experience is that I’ve asked for help at work - quieter areas to work etc - and been told no because it’s open plan and the same for everyone.

Maybe that now changes with a diagnosis. Maybe not?

It’s not a war. The thread seems to have been de-railed by someone with a personal issue. I think most people are just trying to get on and get by and live as happily as possible aren’t they, NT or otherwise?