Chris Packham's documentary on autism

[Pariswhenitdrizzles]

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

I agree with Nike. My husband once told me that I need to make more of an effort with people. It really hurt, because it felt like he was telling me to be less autistic, which would mean being less myself. Sometimes I can't physically do it - it's not about pulling myself together and trying really hard - I can't physically hear you, or process what you are saying. Sometimes when someone touches me it is almost painful. Some days just one question will be enough to make me want to scream. I can't change this stuff. And I think it's too much to expect me to have to spend all of my time worrying about how my idiosyncrasies might be affecting other people.

I was always the one who was wrong in all situations, and yet looking back I was the only one really trying to make the relationship work.

^ This. In bloody spades. It's horrible and borderline abusive to be continually told you SHOULD be more tactile, more affectionate, talk about feelings etc.

It's tiring and confusing trying to behave a certain way. At leass men have the 'excuse' of being expected to be unemotional and stand-offish.

I am not umemotional by the way- I just find it difficult to access them.

I really don't get the hate for ABA. I do a bit of ABA with my son and he's gone from silent to two or three word sentences. I'm not trying to change his personality, he's ace he just needs help to learn in a different way so things that do stress him can be reduced through communication mainly.

I think that you can't blame stealing a kestrel/egg on 'autism' and that his parents should not have allowed that to happen.

creamswirls when an autistic person gets an idea in their head it goes round and round until they do it. It is like a repeating record, an earworm they cannot always stop. Yes he should not have done it but you need to understand its not an excuse it really is that powerful.

But then isn't that a slippery slope towards using autism as an excuse for all kinds of behaviour? Which is then unfair to those who have autism but don't behave in such a way. Where would you draw the line - theft of a bird's egg - theft from a shop - theft from a person - assault - GBH - murder? "He couldn't help it because he has autism"?

It's like when people conflate ADHD with 'being naughty' - "He's so naughty, do you think he has ADHD?" is a question I've been asked many a time.

I agree Creamswirls.

But then isn't that a slippery slope towards using autism as an excuse for all kinds of behaviour?

No. No. It's not.

Of course it is. Where would you draw the line?

The same where you draw the line with any other condition that affects people's reasoning. Otherwise why are we not seeing tons and tons of reports of autistic people getting awy with crimes?

Autistic people- particularly males- seem to be drawn to computer hacking and it doesn't seem as if they are 'getting away' with that.

I think that the "slippery slope" argument is significantly more complex when dealing with complex needs (and I am only speaking here about my own parenting experience). My approach regarding expectations of my son's behaviour focuses on 3 questions:

1. Is the behaviour dangerous/harmful/detrimental? If it is, it needs to be addressed. If not (i.e. if it what neuro-typical people would term "odd" or "quirky") then I will - and have - defend his right to have his own preferences. DS is very cuddly and affectionate but it must be at his instigation and that is fine. I do not and will not ever force him to hug someone or submit to being hugged. He needs a chewie in order to prevent teeth grinding (which he doesn't do when anxious, as is common in neuro-typical people but rather when relaxed as he likes the sensation) and he is allowed that whenever he wants, regardless of stares and judgment because these things do no harm to him or anyone else. However, he cannot be permitted to take food from other people or pull hair when he doesn't want to do something.
2. What is the reason for the behaviour? (And this is why collecting and analysing data is important as the reason is often not what I would assume, looking at an autistic child's behaviour from a neuro-typical adult POV). We found that about 85% DS's challenging behaviour (i.e. harming self or others or doing things that are very socially unacceptable, such as grabbing food, kicking up gravel on paths or reaching for other children's hair) was due to communication frustration, 10% due to sensory processing issues and 5% the type of boundary-pushing or identity defining behaviour most children attempt.
3. Can we teach him an alternative behaviour that meets his needs? If yes, then we set the foundations for the alternative while making sure that the harmful/unacceptable behaviour did not yield a reward and then honour the alternative.

And, yes, it is terribly unfair that this is so much more difficult for him than for children who have been born with the enormous (and totally unappreciated) privilege of typically functioning language processing capabilities. It is a million times more difficult for him and OF COURSE he gets frustrated and acts out when the people around him fail to understand what he wants. My job is to help him find appropriate ways to communicate and to ensure that those ways are respected. I would be doing him no favours if I gave him a pass on all behaviour because of his autism, just as I would be cruel and unkind to insist that he conform. The line - as far as I am concerned - is very clear.

I've heard good things about chelation therapy.
Are you serious? People have died. Snake oil.

Absolutely brilliant post, CeeJay!

I don't know much about it, Gilead. What people? As far as I'm aware it's a course of specific vitamins, and nothing is branded, so I don't know who would benefit financially.

I'm Aspie.
Research has found that in fact ABA is used, in the main, as demonstrated in the programme. This is unfortunate for people like CeeJay who have seemingly managed to find a gentler way of implementation.
I am 58 and still remember my mother belting me for tics. I still tic.
I am on the fence with regard to cures. I don't need one, nor does any member of my family. I am of the X men persuasion. But that's with regard to me and mine.

loved this programme. However I thought the key question was not about a 'cure' for autism but more about the secrets to Chris' success! As he himself points out, many autistic adults are not economically successful and therefore are not living in immaculate thatched cottages in the New Forest as he is. The programme doesn't address this head on, but the way i see it the reasons he has managed to be so successful is because:

1. he is very high functioning and has a depth of obsession and encyclopedic knowledge which helped him get on in his career from a young age
2. he has very supportive and highly skilled parents. he appears to have come from fairly humble beginnings but look how successful he and his sibling have been!
3. he can 'pass for normal'. without this, he would not have got his big break on the Really Wild Show in the 80s
4. he's really good looking with a very distinctive sense of style. i know this seems flippant, but it is an advantage many of us just don't have!

So i found the programme slightly irritating in that it skirted around the contributing factors of his success. it would have been wonderful to have heard from his parents for example.

I don't mean to minimise his distress over certain things which was clearly very real, but the fact is he lives a very full and independent life unlike many adults affected by autism.

This is a fascinating thread. I have a son who has been referred for diagnosis as suspected being on asd and a dh who definitely has traits. Thank you to all who have contributed-it has really helped my understanding.

Hi Gilead - I am so sorry to hear that you were subjected to punishment. I would be very interested to see the research to which you are referring and wonder how recent it is as making sure that our children are not at risk for abuse is paramount to most parents. My son's happiness and wellbeing is the basis for everything else regarding his learning and development. I think that education in general and ABA in particular, has changed a great deal in the last 40 years. Certainly "old school ABA" used physical punishment. So did "old school" schools. Not only is the "less gentle" approach you describe unlike anything I - or any of the parents I have met - have encountered in the past 6 years, but the BCBAs and program supervisors I have met all - without exception - state categorically that such measures are both unethical and abusive. In my experience, much of the "controversy" around ABA stems from outdated information. The ABA programs that my son and his peers are in are along the lines I described. Furthermore, looking at this approach as it is now - not as it was - is crucial to both ensuring that these standards are applied to all programs and to getting the profession fully regulated in the UK so that there is proper oversight to protect families from unqualified or unscrupulous practitioners.

CeeJay I think there was a programme on earlier this year about ABA. I found it quite moving and it did seem to make a big difference to some children. I seem to remember one little boy who was hardly eating anything and at the end of the programme you saw him out with his mum tucking into a plate of food. At the school they showed it certainly didn't seem to involve punishment.

I think 2 of my DC are on the spectrum, one's an adult. I missed this.

I enjoyed the programme and thought it was very honest. It's sparked some good conversation between me and DP (who has some traits.)

I did think the comparison between the ABA school and the Microsoft/Silicon Valley set up was unfair though. The Microsoft employees are high functioning (like Chris) - and have very different challenges to those of the non-verbal pupils at the ABA school.

Aspergers as a diagnosis made a lot of sense to distinguish between the high functioning end of the spectrum (where Chris is)

Thank you CeeJay, super posts
I missed the programme so now trying to get it on BBC player.

CeeJay, the research applies to the USA. I don't think there has ever been a problem with implementation in the UK, although when working as part of a diagnostic team it's not something we tend to recommend.

Thank you for your sympathy, I'm aged (late fifties) and mother was, and apparently still is, a cow anyway!

Chris Packham's thank you message