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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Chris Packham's documentary on autism

217 replies

Pariswhenitdrizzles · 21/10/2017 21:36

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

OP posts:
NearLifeExperience · 25/10/2017 10:09

Agree with others that it is not merely others' attitudes towards people with ASD that is the problem. ASD itself often is.

When my DD was literally screaming for hours in some mental torture and completely wrecking her room - and I mean smashing and breaking doors and furniture - as well as thousands of other behaviours at home,in private, that caused her (and us) great anguish and stress/distress it was ASD itself that was the problem, not other people.
We are lucky: we've had help, and schools have been kind accommodating and understanding. Can't blame others.

My DD is sad and distressed that she's not like the other young people at comp. She longs to be normal. Would she accept a cure for her ASD? Without a second thought.

Boulshired · 25/10/2017 10:16

For me it was wonderful at portraying Chris and his life and his Autism. But that was it, I felt uncomfortable with him and those in the US as they came from a very different life experiences of Autism. I would sell my soul for a cure if it meant DS2 did not face a life of residential care.

VivaLeBeaver · 25/10/2017 10:19

I thought he was quite clear that for him as an individual he wouldnt want a cure but he understood others might.

x2boys · 25/10/2017 10:21

I was replying to a previous poster who said seeking a cure for autism is as abhorrent as seeking a cure for "being gay"

ownedbySWD · 25/10/2017 10:22

@Boulshired I've heard good things about chelation therapy.

Spikeyball · 25/10/2017 11:00

I would take away the things about his autism that cause my son distress. The inability to communicate many things, the anxieties about many things that result in self injurious and aggressive behaviour and the extreme sensory difficulties that the world can never change enough to accommodate.
Regarding ABA he is being taught to communicate using ABA methods as are many non verbal children. It is not just about getting people to conform.

CeeJay1012 · 25/10/2017 11:01

Big sigh. This is going to be long.
ABA is an approach to teaching and there is an enormous amount of misinformation and ignorance about it - which sadly were reinforced in this otherwise excellent program. Discussions about the "punishment" aspect of it are as irrelevant as stating that typical education approaches are "barbaric" because back in the day corporal punishment was used. Punishment and "aversives" have no place in any education approach for any child - particularly a child with disabilities and, thankfully, this archaic practice is just that. My son is autistic and on the more "severe" end of the spectrum and was in a home-based ABA program for 3 years and is now in an ABA school. The main elements of the approach are as follows:
1.) All behaviour exists for a reason. We - all people - do things to either gain something (concrete things, such as food, water, entertainment, our pay cheque etc or abstract things, such as sense of accomplishment, information, acceptance, love, companionship etc) or to avoid something (e.g. pain, discomfort).
2.) Understanding what motivates an individual child is key to both respecting that child and subsequently teaching them. Many children with ASD are motivated by activities that are different from their typically developing peers and therefore the "typical" education approach is in fact at best ineffective and at worst punitive (for example, my son finds the noise of other children extremely distressing and playing in the midst of a group of children intolerable. Offering him "playtime" as a "reward" is completely misguided.)
3.) By understanding an individual child's motivation AND by breaking learning targets down into parts that are manageable for the child, that child will be able to learn. An example is the core learning skill of matching. This is a foundation skill, upon which most other learning is based. Typically developing children learn this almost organically in early childhood. My son did not. It had to be consciously, painstakingly taught. Ditto imitation skills - also a foundation skill and also organically learned in typical children. Did this require repetition? Of course. Would this have been possible without his program supervisor understanding what engages and motivates him to learn? Of course not.
4.) Core to an ABA approach is data collection and analysis by a BCABA (Board Certified Applied Behaviour Analyst) in order ensure that the program is individualised for the child and is leading to generalised learning/skills acquisition in the natural environment.
5.) A good special education program - and the programs my son has received both at home and now in school are very good programs - is a team approach, and includes occupational therapy (especially with regards to sensory issues), physiotherapy, speech and language therapy and educational psychologist input.
6.) The principles of ABA are in fact used in mainstream education (i.e. motivation to learn is provided to children and "rewards" include playtime, gold stars, positive feedback etc, leading to - hopefully - the learning becoming self-motivated). This is little different from a well-run ABA program - except an ABA program needs to be much more individually tailored both in terms of pace and learning rewards and the data collection process is much more structured as there are complex factors at play.
7.) My son learns differently from typical children but he does learn. And, just as typical children do not always wish to practice their spelling lessons or multiplication tables, he enjoys some activities more than others. However, I would be doing him a grave disservice if I did not push him to learn to the best of his ability - opening our children's world's to a variety of possibilities is a primary function as a parent. Did we initially use primary reinforcers (i.e. food - in my son's case, grapes)? Yes. He had not acquired play skills. Do we now? No. In most cases, his learning is now self-reinforcing (i.e. he loves to learn and acquire new skills and he loves the activities themselves because his highly skilled teachers know how to make learning fun for him) and he now has the play skills that make toys fun so "playtime" is a genuine reward.
8.) In terms of using an ABA approach to assist with dealing with what is termed "challenging behaviour", the standard is to look at the ABCs (i.e. Antecedent, Behaviour, Consequence) of any behaviour before addressing it. Therefore, there is by definition, an imperative for the CAUSE of a behaviour to be understood and addressed. For example, my son finds the noise of other children crying very upsetting, and this has led to self-hurting behaviour (head banging, biting his own hand). Once we understood that it was not crowds or even children in general - only distressed children - that upset him (he is non-verbal so cannot say what specifically bothers him), we have been able to help him (he always has easy access to ear defenders and a sign to request "time out", which is always respected). This means that he is now able to be with other children - something he indicated he wanted - without experiencing undue stress. In general, the only "behaviours" that a good therapist will look to manage are those that pose a safety/health risk (for example, we had to address my son's propensity to try to bolt or to drop to the ground on his hands and knees randomly as these are safety issues - the latter was determined to be a sensory issue so by providing him with a "sensory diet" to ensure that he had the chance to explore different textures safely, he no longer needed to do this while out walking and the safety issue was resolved while still honouring his very valid needs) or those that are blockers to the child's well-being. By this, I mean that we are not looking to block stimming behaviour that poses no risk - and stimming behaviour that is harmful (such as pulling his own hair) has been redirected to something that satisfies the need for the behaviour in a way that doesn't hurt him.
9.) The goal of my son's programs has always been to help him reach his potential - not to make him "less" this or "more" that. We want him to be his wonderful amazing self and that includes finding a way to help him learn and grow. To dismiss the approach that works for him and many, many other children is both disrespectful to him and to the teams of dedicated professionals in this field who devote their lives to developing "ways in" to the worlds these children in order to develop the highly individual, and profoundly caring approaches to learning that help them to flourish.

MephistophelesApprentice · 25/10/2017 11:12

As someone at the high functioning end of the spectrum, I'd take a cure in a heartbeat. Failing that, something to identify the genetic components so that I could be sure this horrible affliction dies with me would be good.

Spending my life as some pathetic, emotionally crippled half-human ogre is less than pleasant.

grannytomine · 25/10/2017 11:50

CeeJay, thank you for the explanation. That makes alot more sense.

Nikephorus · 25/10/2017 13:06

It's exhausting, the bluntness the obsessions about very boring subjects the lack of intimacy and affection, the selfishness that he doesn't recognise I think I would cure the negative parts of his Asperger's
Look at it from a different point of view though. He's blunt - he's being honest. So many people avoid being honest - they dress it up, they tell lies rather than tell the truth, and yet the whole time they're thinking the same as your son. The obsessions about boring subjects - they're not boring to him, and probably not to plenty of other people. I'm sure that some of the things that you enjoy talking about are extremely dull to others. The lack of intimacy and affection - plenty of people don't enjoy showing intimacy and affection, plenty also go overboard with look-at-me displays of it. Just because he doesn't show it doesn't mean he doesn't feel it on some level. And everybody is selfish on some level - his is just more obvious and he doesn't pretend otherwise. They're only negatives in YOUR eyes, not in his. And this is the problem with Asperger's - the assumption from non-autists that their world and their viewpoint is the right one. You're the one with the real problems.

CamelliaSinensis35 · 25/10/2017 13:13

When you've seen a family member repeatedly melt down because some tiny aspect of their day has been changed, hit themselves/the wall/other people when they're overwhelmed, understood that compassionate care workers are pure luck of the draw, looked ahead to the future to an individual who will live and die in a care home without their parents alive to look after them.. you'd be praying for a cure too.

JessicaEccles · 25/10/2017 13:22

you'd be praying for a cure too

I think that this is why it was a mistake to do away with the diagnosis of 'Asperger's'. Autism must be unique in that it has a such a wide spectrum of effects and behaviour that somebody is always going to be offended by a discussion.

I would never ever want a 'cure'- a cure for what? This is me, this is how I am and I have wasted enough years being apologetic and ashamed.

Zaphodsotherhead · 25/10/2017 13:28

I didn't watch it, but my OH did. I recently (gently) raised the subject with him, as I believe he has many, many of the traits (as does his DF). He said that he recognised himself in a lot of what CP said, and it's helped him to realise that he really does fall outside the spectrum of what is 'neurotypical'. Up until now he has believed that his behaviour was 'normal' and everyone else was somehow 'wrong', but the programme helped him to see how hard it is for other people to cope with some of the more, ahem, particular behaviours.

I doubt he will pursue a dx, but it helps both of us. Me, because I know he can't help it, and him because he now knows that I'm not being 'weird' asking him to hold my hand now and again, or try new foods!

boobybum · 25/10/2017 13:31

Thank you CeeJay - you've saved me a lot of typing Smile

Summerswallow · 25/10/2017 13:36

MephistophelesApprentice so sorry you feel like that. I haven't had your experience so can't say anything meaningful in relation to it. Sorry that you find life so hard.

Bekabeech · 25/10/2017 13:38

MephistophelesApprentice I think it is very sad that you think so negatively about yourself.

My problem with ABA is that it is based on Behaviourism. That very basic idea that all we can judge is what we see, we can't assume that anyone (or any animal) "feels" anything.

Being non-verbal doesn't always mean "can't communicate" for example there is "Why I Jump " jump which was written by a non verbal Japanese boy.
If you are not a behaviourist then you can see behaviour as a form of communication.

If you really want to be upset by what has happened to some Autistic individuals then read "Neurotribes", it made me cry.

CeeJay1012 · 25/10/2017 13:39

NP - I am at home with poorly little one (because it's half-term 😉) and had some time whilst curled up under duvet in front of Peppa Pig to write!

GalaVanting · 25/10/2017 13:42

Nike I suspect you haven’t been in a long term relationship as a non-ASD partner with someone who has it..undiagnosed when you met and later married and had kids.

This isn’t about not having PDAs, it’s about not being able to share your feelings with someone because a) they don’t understand b) they’re not really interested and c) if what those feelings are about in any way contradicts their sense of what’s right, you’re IMMEDIATELY wrong.

The problem is that many adults weren’t diagnosed as children or teenagers. So both partners entered a relationship with massively different understandings of what was expected. To make it more complicated, they were using the same terms but had different meanings behind them. For example, both would agree, “Intimacy is important in a relationship.” where one means sharing dreams, desires, innermost thoughts and gender physical intimacy while the other means going together to the supermarket (and that’s not hypothetical btw). Both thinking “intimacy” is such a basic concept it doesn’t need explaining.

The fact that so many people (usually women but not always) not on the spectrum have really suffered in relationships with people with Aspergers/HFA is not because there’s anything wrong with either. It’s because less was known about it before and combined with societal pressures on both. One partner ends up feeling they’re always wrong and sad while the other either doesn’t notice or does but has no idea how to begin a conversation about it, never mind actively helping alter the situation.

I hope with the next generation people will be more informed and therefore the awful pain that has been caused by two very lovely people who think radically differently having a relationship together, can be avoided. There’s no much more painful than your joint love not being enough to make you happy.

CeeJay1012 · 25/10/2017 13:42

@bekabeech - of course behaviour is a form of communication. That is the entire point. My son is non-verbal so has had to find other ways to communicate his needs/wants etc. This is precisely why observing, documenting and analysing his behaviour is so important if we are to understand what he is trying to "say"!

GalaVanting · 25/10/2017 13:43

*gender physical intimacy..no idea what that means! Should be “physical intimacy”!

x2boys · 25/10/2017 13:48

I think people at one end of the spectrum can't speak for others or their parents at the other end of the spectrum or anyone else in between we all come from different perspectives I don't have autism but my son does hes non verbal and very challenging but he's also very funny and cuddly but I have met lots of great people through my son's diagnosis but obviously I can't live forever and I worry about what will happen in the future my son is 90generally very happy but its the impact on the rest of us that is hard.

Zaphodsotherhead · 25/10/2017 13:50

For example, both would agree, “Intimacy is important in a relationship.” where one means sharing dreams, desires, innermost thoughts and gender physical intimacy while the other means going together to the supermarket

This.

My OH thinks us both sitting in silence in the same room is being intimate. Because, to him, allowing someone in his space is being intimate.

Nikephorus · 25/10/2017 13:51

One partner ends up feeling they’re always wrong and sad while the other either doesn’t notice or does but has no idea how to begin a conversation about it, never mind actively helping alter the situation.
I've been the one feeling always wrong - I'm the one with Asperger's, I'm a woman, and I was diagnosed as an adult. We have feelings too you know. We try and display affection in our way but it's not "right" for the NT person. 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. So don't be condescendingly telling me how autism works or how autistic/NT relationships work because I've been there from the other side and the NT partner does not always come out smelling of flowers. Try seeing it from the other side.

Breadwithgarlicon · 25/10/2017 13:57

I watched it with my dp who's an aspie. We both enjoyed it and found it very interesting. (I really like Chris Packham.)

I was horrified at the decor etc at the specialized treatment place - not good for sensitive people. Was it supposed to be loud and harsh like that to desensitize them?

countycouncil · 25/10/2017 13:58

Amazing post @CeeJay1012.

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