Last night I watched a programme on the BBC called ‘Asperger’s and Me’ by Chris Packham. Chris has had a tv career spanning three decades where he has always made use of his ‘encyclopedic knowledge’ of the natural world. I had no idea that he had a diagnosis of Asperger’s and as my son is autistic I was interested to have an insight into a world I am often excluded from.
I have to say that I found the programme incredibly informative, emotional and inspirational. Chris explained about knowing he was ‘different’ from a very young age but not knowing why. He shared the ways in which his social difficulty left him feeling isolated and the bullying he’d experienced at school. He shared memories of some deeply personal times in his life such as the ‘catastrophic’ impact of the death of the kestrel he had reared, his fascination with his own death and the times he had contemplated suicide. But far from being a depressing account of a life of struggle, Chris shared the coping mechanisms he has developed over the years to make social interaction less awkward and exhausting for him and showed an endearing acceptance, pride even, for the condition which has in fact created his success. By his own admittance, his phenomenal memory for his love of nature was his USP (unique selling point) when it came to securing his first TV role on The Really Wild show which I watched growing up.
As part of filming the tv programme he travelled to America where he visited silicon valley and was reminded of the great minds who had, and continue to contribute to the development of technology in areas such as space (NASA) and communication (Google). In fact, he visited Microsoft who not only accept that those with autistic traits can bring something unique, diverse and incredible to the work place but are actively facilitating their inclusion through more considered interview processes. It was encouraging and exciting to see that the qualities that often make those with autism stand apart from others can also make them stand out in a great way and they are being recognised for this.
Sadly, not everyone shared this view and Chris also visited one of a large number of schools which employ a ‘systematic approach to eradicating autistic traits’ called Applied Behavioural Analysis (ABA). Although this therapy claims to have over 50 years of empirical evidence to show its success and validity, example footage of the methods originally used made for incredibly distressing viewing as a young girl was subjected to ‘positive reinforcements’ in the fractions of seconds that she was compliant during a hysterical melt down (NOT a tantrum as the voice over woman called it – these are two very different things). Now I have no doubt that these outdated methods are no longer employed as they were in the 1960s but the fundamental principle is the same. The belief that with rigorous and repetitive behaviour modification, the traits deemed to be socially unacceptable can be replaced with behaviours which conform to social expectations. The principle of the school which Chris visited claimed that after 1-2 years of intensive intervention, 30-50% of people receiving ABA no longer met the criteria for Autism Spectrum Disorder diagnosis. In explaining this he said that professionals would no longer be able to recognise the autistic person based on their behaviour. But surely then, this is simply a mask? In the same way that Robin Williams made a very convincing Mrs Doubtfire, beneath the charade he was still a man just as these children are still autistic.
As the mother of an autistic son I know only too well how painful and challenging it can be to watch my son experience a meltdown or to adapt our lives to help him live his but that’s my duty as his mother. Like Chris conceded, I do understand that some parents would want to explore the options available to them to ensure that their child stood the very best chance in life and I certainly would never judge a parent for considering it. I have written before about my own worries of what happens to Harry after I die. If ABA could provide him with some strategies to cope better in my absence then I can see the appeal but the brief research into ABA that I have done since watching last nights programme hasn’t convinced me that Harry would be at the heart of any intervention, merely societies expectations of who Harry ‘should be’. As much as I want my boy to be safe and happy in his life, I want him also to know that his difference and brilliance is part of who he is and I am proud of him.
At one point, the principle compared the techniques employed within his school to ‘educational chemotherapy’ which I have to say, angered me. To view autism as socially unacceptable is one thing but to compare it to a deadly disease such as cancer was outrageous. A disease is something that you have, Autism is who you are. It’s a fundamental part of your existence, the Lego blocks of the person you become. Cancer can be treated and removed before it kills you first. Autism is a condition that can be lived with and although it can be challenging and difficult at times its far from a death sentence.
I have also read about different diets to enhance concentration and reduce stimming behaviours (the jumping, flapping etc behaviours which often accompany autism) as a way of supporting a person in a natural way rather than artificially suppressing them through training as you would a pet. I haven’t tried any of them myself, mainly because Harrys diet is already quite limited and specific but also because I don’t feel that his behaviour warrants a change yet. If people have an issue with his melt downs when we are out an about then that’s their problem and not mine. In the same way that racism and sexism are grounded in opinion and not fact. If I was to look into ways to help Harry it would be for his benefit and no one else’s.
Chris recognises that his form of autism (Asperger’s) doesn’t have the same challenges as those at the other end of the ASD spectrum, like my son have, such as the non-verbal communication and significant social issues but I thoroughly enjoyed his bravery, honesty and discussion around a very important and emotive subject. I found it heart-warming to see the connections he has with his pet, his partner and step daughter and I loved that he was able to self-reflect on his journey and the highs and lows of living with Asperger’s (many ‘neurotypical’ adults struggle to self-reflect! It’s not as easy as it sounds to have an objective view of your own life) I definitely have a new found respect for Mr Packham now!
The search to ‘cure’ autism is, for me, up there with the homosexual conversion treatments and the days of forcing left-handed children to write with their right hand. Treatments which made society feel more ‘comfortable’ for the people within it. As the likes of Microsoft have already found though, magic happens outside of the comfort zone and while the search for a ‘cure’ continues I shall enjoy watching the magical developments in the 21st century which will undoubtedly be made by some incredible autistic minds and hoping that a cure for intolerance can be found much sooner.
“No-one should be imprisoned by this condition. They should be allowed to exult in those aspects of the condition which empower them. That difference is such a valuable tool, an enormous asset. To be able to see, understand, process and remember things in a way that most people can’t do has to be seen as a gift…We need to understand autistic people better and not try to change who they are” Chris Packham.
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Firstly I would like to say how much I love your blog and how I find you really inspiring. I feel I need to comment on your reference to ABA. My son has been having ABA for the last 3 years and I am so glad I found it. Far from trying to change the essence of who my son is, ABA has given him a voice, indepenence and the opportunity to enjoy the world far more than before. He loves his sessions and his therapists. You can have love and acceptance for a child and still have aspirations that they can do more, access more and learn more. I am disappointed that the programme last night gave a one sided view of ABA and would be sad if both the programme and your blog stopped someone from trying something with their child that could make such a difference to their lives.
Thanks so much for your comment Lisa. Its great to hear another perspective and yes you are right, the programme and my blog only give a snap shot of the therapy. Like all therapies, it will suit some and not others so Im pleased to hear that your son enjoys it and is feeling the benefit! C x
As an autistic person and the mother of an autistic child, what I saw on that programme (ABA) horrified me. Shouting at autistic kids until they conform? Really? When will people stop trying to suppress autism and work with it instead of against it? ABA is basically forcing somebody to be something they’re not – mostly in order to conform. Stuff that for a game of conkers!
Now I’ve got that off my chest, Chris was fantastic and it’s one of the best programmes I’ve seen about autism. 🙂
I do think those techniques aren’t used anymore (I would hope not) and I am hearing both positive and negative experiences of ABA but I dont think its something I would look into for Harry C x
I totally loved this programme and Chris’ honesty too! I agree with you, I’m not a fan of anybody trying to change our children to fit into what society expects. That said, I’m sure there’s the possibility that ABA depends on the child’s needs and works in a way for some children or parents. It’s not something we thought would suit our family x
Yes I agree that its each to their own if they feel its right for them. Not sure it would be my choice though C x
Also felt the need to comment on your critique of ABA. It gets really bad press. I trained as an ABA therapist back in my uni days and have used elements of it as a teacher for children with ASD. I’ve never been taught to or used it as a way to change a child. We successfully used ABA to teach a severely autistic child who communicated almost solely through violent self injurious behaviour to use PECs to ask to go to the toilet! I’ve seen the Lovaas films and they make for pretty grim viewing but Ho dryly- it’s not all bad.
Glad you enjoy yes the programme though. And you’re right autism shouldn’t be ‘cured’ and comparing it to cancer is awful. I’ve saved the programme to watch when I get a minutes peace,
*meant to say honestly it’s not all bad
Thanks Emma. I do think its really important to have all sides of an issue. Do you think it makes a difference being trained in the Uk which could take a more gentle approach or am I wrong in that? Thanks for offering another view point C x
This is such a heart wrenching post. What got me the most what your line ‘What happens to Charlie after i die?’ You are a fabulous mama!
Thanks Becca :-* xx
Beautifully put – I agree that it sounds a lot more like a mask than a ‘cure’ – and what makes us different is part of what makes us, well, us! X
Absolutely. Embracing our differences is so powerful C x
This is really thought provoking and well written. I’ll have to watch Chris Packham’s programme.
Thank you. Yes, do watch it. It was fantastic C x
I haven’t watched this yet but I plan to, as soon as I get a spare hour. I think it’s great that ASD awareness is being raised and it’s being talked about more and more every day. ASD runs heavily in the boys in my family so I always want to learn more.
I think you’ll find it really interesting but also tough at times. Chris’s honesty is fantastic C x
Very interesting point – and beautifully written xx
Thanks so much C x
I heard Chris talking about this show on the Radio, I think the day before it aired, but to be honest I completely forgot about it! I must find it on catch up!
It was brilliant. Definitely worth a watch C x
My only experience of Autisim is our previous neighbours son who is such a lovely boy; one of the few teenagers I’ve come across today who demonstrates genuine care and compassion. He had a love of trains and would sit in the garden for hours watching his mechanical train go round. I think if society has the problem then society needs to change not these wonderful and highly inteligent children who have so much to offer the world x.
Harry loves his trains too. I think its the calming nauture of their motion. I agree, they have so much to offer Cx
Humans have been conditioned to believe that we should eradicate anything in a persons chatacter thay doesnt conform with social norms. Time and money would be much better spent in my opinion helping to enrich the lives of people living with any conditions which make life more of a challenge. I really enjoyed the chris packam story and like you was unaware of his personal story. I bet there are hundreds of people living with asd undiagnosed and like you say it is not a disease. Love your end quote that you hope a cure for intolersnce i found sooner! Great post xxx
Thanks so much. Totally agree. Understanding and awareness is free C xx
I would have liked to have seen more on the ABA’s why didn’t he interview someone who had gone through the treatment. Apart from that I thought the program was excellent.
Yes that would have been interesting. There are positive reports as well as negative, just like with everything
Very well written as always Charlie. I’ve always loved Chris Packham, long before I knew he had autism. His enthusiasm shines through.
Totally, now I love him even more! C x