Chris Packham's documentary on autism

[Pariswhenitdrizzles]

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

My son is 14 still in nappies, low functioning. I would give everything I own for a cure.

Partridge totally understand my son is seven and in nappies I hope he won't be at fourteen but its going to take a long time if he's ever continent hes non verbal also .

How can you know that zzzzz? I know that if I wanted to communicate something but physically couldn’t, I’d be annoyed and frustrated. If this happened all day every day then yes I likely would be miserable.

It isn't zzzzz my boy is generally happy as long as he gets everything he wants if he doesn't its a different matter my arms full of scratches and bites are proof of these hes oblivious mainly ,but its hard on the rest of us I love him more than anything of course, but I wake up in the night worrying about his future ...

It's not the key to happiness, but being verbal can sure help you communicate precisely why you feel unhappy. Your personal experience doesn't apply to everyone and their situations. Plus being doubly incontinent is pretty stressful for all concerned. There aren't always adequate changing facilities for babies, let alone for older children. In fact there aren't really any for older children, because a child is generally toilet trained by about 4 or 5, give or take. It's considered a basic task. Not being able to communicate or even recognise when you need to go to the toilet means that you have to constantly rely on your parent. Part of the joy of having a child is seeing them grow up and attain more and more independence until they leave home and buy their own place. If you have the developmental age of a toddler, that's not going to happen.
Being able to talk and go to the toilet doesn't automatically mean happiness, I don't think anyone's saying that. It would make life a hell of a lot easier for these people though.

Thanks for your posts @Gilead. Mutants unite!

Again zzzzz you are not qualified to speak on behalf of every parent of an autistic child. Just because your child is happy and you’re OK with it doesn’t mean you’re representative of other parents in your position. Some parents on this thread have clearly unhappy children.
There’s also a current thread about people who are sick and tired of the fluffy positivity stuff around being disabled. The reality is that being disabled does suck sometimes. Maybe go and check it out.

I actually think zzzz is speaking a lot of sense.

If you are seeking a “cure” then you are saying there is something “wrong” with the person. But a lot of people with ASD find this offensive.

Yes in a relationship your partner should meet you halfway. But if you live in London but think they live in Manchester then your idea of halfway might be Birmingham. However what if they were faking it and actually only worked in Manchester but actually lived in Carlisle?
That doesn’t mean you have to stay in a relationship with anyone.

Saying Sorry can be extremely difficult. I have been working on it with my DD for 14+ years. At one point she would say “the S word” instead. It is far more emotionally charged for her than most people. But she can “make up” with her siblings given time.
The emotional charge is so strong though; try to think of something you just couldn’t do eg pick up a spider with your bare hands or kill a pig for meat. That total I can’t is how my DD feels about saying Sorry.
That doesn’t mean we aren’t working on it. But knowing she has got something wrong so upsets her self image that it is very hard to admit.

There is something “wrong” with my child in fact there are many things “wrong” with my child. He is going to spend most of his life in an institution, he harms himself and others and the larger he gets the more his world closers. This is why some parents with children with Autism and Severe Learning difficulties become isolated not just from the NT world but also the Autism world. The joy I find with my DS is despite of his Autism not because of it. It is why I wished the show had stayed away from the US part and the comparisons.

Thank you for your post CeeJay. My DS (non-verbal ASD & ADHD) attends an ABA playschool and agree with all you have said about it.

The programme about ABA referred to earlier (which is evidential and balanced imo) is here:

If you can access it (it's from RTE) this is a very moving piece:

www.rte.ie/player/ie/show/autism-and-me-30004585/

Really wish I hadn’t started that Who Hates Chris P ☹️🤐months ago!

"Being nonverbal is not synonymous with misery."

I agree but if my son could communicate basic needs, what hurts, what is distressing him etc it would remove a major source of him being distressed and hurting himself and other people.

I agree spikeyball but we never get further than the what hurts and the pointing. We've tried numerous ways with him.

What I've found with my son is that some people in education and health see the hurting himself and others as being something that people with 'low functioning' autism just do rather than there being a reason for the behaviour. My son never does this for no reason but it is hard getting others ( who should know better)to accept this perhaps because it then requires effort/ money on their part to try and sort the problem out.
He has been left in states that you would never leave a NT child in but it seems it is ok because he has asd and sld.

@lynmilne65 did you? That's really horrible trolling to start threads saying how much you hate some. Awful. Never can understand how people 'hate' random people of tv. Surely you don't really hate them you're just attention seeking

The non verbal argument:
I am verbal, in some cases, verbose. I have various degrees and can write a damn fine essay/research paper. But, I'm on the spectrum, I cannot always express myself 'in real time'. I do not always comprehend what is required of me because other people cannot always find a different way of asking or because I can't unravel the sentence to suit my needs. I will always answer 'fine, thank you' to somebody because that's what I've been trained to do. Doesn't matter if I'm falling apart (I have cPTSD). I am far funnier and more eloquent online or on paper than I am in real life. zzzzz has a point, being verbal doesn't necessarily make things alright and doesn't necessarily mean that you are able to express adequately what your difficulty is.

My DS (16) was diagnosed asd at age 4. I’m about to be assessed, as an adult. Some might think it rather self-indulgent to seek diagnosis as a “functioning” adult but my life, work and relationships have been affected by what I always considered to be my “different-ness”. Now, having read much and putting two and two together, I see that my DS is me.....but worse.

I thought the programme explained much about CP. I could see all the effort he made to be in the not world and how his intelligence and knowledge allowed him to have a career in a subject he loves. I could also see the toll it took and was not surprised that when off camera he lived in a solitary state with his dog. Yes, he had relationships and a personal relationship that whilst different to most, was good for him and mostly good for the lady. But essentially, I can imagine that the amount of energy it took for him to be “in the world at large” was colossal and his home was his retreat from all of that.

I liked the way he acknowledged the many many autists who don’t achieve. The ones who remain in their rooms, in part time (if any) employment. Those who never reached their personal “high”; their individual potential untapped. We need to do more for them.

The ABA footage was shocking. I think time will come when we will see that that approach was punitive, tortuous. Like trying to train a circus animal to perform in a way that is virtually impossible as it changes the nature of the inmate creature it is meant to be. My DS is is meant to “work” differently. Me too. I could never have put him through aba “treatment”. I was reminded of how many years ago, left handed writers (because their brains were wired that way) were tortured into right handed use. It’s a similar thing imo.

Electric shock therapy. No. As far as I could see the trials done in the US had yielded nothing. ECT isn’t as brutal as it was in it’s infancy but there’s no way I’d want my DS being experimented on.

Anyway, well done BBC and Chris Packham. An excellent programme. It showed it all. The pain, his success, his modified functioning in the NT world.

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
When was the last time you asked a deaf person to remove their hearing aid, a short sighted person to remove their glasses, a wheelchair user to get out of their chair?
Your dh was an arse. Mine too. Just because he has a diagnosis, it doesn't excuse his bad behaviour. In over 20 years I did all the adapting, exdh did none. That was him being a selfish, narcissistic knob, not his Aspie side.

I can't wait to see this later on. I really admire Chris Packham's honesty in talking about this issue. I just came on to say that for anyone who enjoyed the documentary, his memoir Fingers in the Sparkle Jar is really thought-provoking and actually very, very well written. You can get it on audiobook, with him as the reader, too.

When I was looking for this thread (I hadn't bookmarked and it was before I'd posted) I searched Chris Packham on MN and found a 'I Hate CP' thread, and another about one of his programmes where some intelligent poster (who doesn't know what 'fact' means) states, more than once, "CP is a creep. Fact"

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

What I've found with my son is that some people in education and health see the hurting himself and others as being something that people with 'low functioning' autism just do rather than there being a reason for the behaviour

Yes spikeyball I've had the same thing. Very recently actually I posted about it on the SNs board. The curveballs I have come across in the diagnostic process has always been from an educational or healthcare person who absolutely should know better.

The most recent one being "well we have plenty or children in our school with autism and none of them have done what JonSnowDS did today". 🙈