Wednesday, 2 April 2014

Living With Autism

"Living With Autism"
BBC Horizon
Last night, I watched the BBC Horizon Documentary called, "Living With Autism".  Elements of the program were fascinating...other were deeply disappointing.  

First, to explain, we initially noticed what we believed were autistic-like behaviours in our then two-year-old son in January a year ago and we mentioned these to his various therapists.  Six months later, during his two-year developmental assessment, one of his Consultant's said she believed she had enough information to diagnose autism but we and his other therapists still wanted to be sure that these behaviours weren't being triggered by his other disabilities.  Another eight months of observation, research and living with our son and we were convinced that he did indeed have autism.  At our meeting with his Consultant two weeks ago, she said she believed it was now time to confirm the diagnosis and we agreed.

On this basis, we are very new to 'Living With Autism' and we do not yet have as much experience or knowledge of the condition as many other parents with autistic children.  But allow me to share a small snippet of what our life is like: our son has constant meltdowns - tantrums that involve injuring himself, us, our pets, throwing toys and small items of furniture around and ear-piercing screams.  He cannot abide haircuts, doctors appointments or changes to his routine.  If Daddy leads him out of the house, he must go to Daddy's car or he has a meltdown.  If Mummy leads him out of the house, he must go to Mummy's car...or he has a meltdown.  Adam cannot comprehend or adapt to small changes that would not even phase many other children.  He has absolutely no sense of danger and will repeat behaviours without making any connection between these and the injuries that result.  He has been covered in bruises, has had large goose-eggs on his head and cuts from these injuries.  There have been times when I have genuinely feared that others looking at him will think we abuse our son, when in reality he injures himself.  We have discussed this with his Consultant and expressed our fears, to have her respond with understanding and empathy.  

Our son has very minimal communication skills and while he can sing blurred versions of entire songs or recite lines from TV programs, he cannot tell us if he is hungry, thirsty, tired, wet or dirty.  His social skills are very minimal and he plays alongside other children, never with them.  At any given point, our son will simply pull free of our hands and take off. He does not respond to his name nor demonstrate any understanding of why running in front of cars is bad.  We spend our days constantly scanning for danger on his behalf and desperately trying to keep him safe.  There are many other things I could say but to anyone with knowledge or experience of autism, I know these descriptions will be very familiar.

So when I heard about the Horizon documentary, I made a point of watching it, being sure it would be an interesting insight into the lives of others like ourselves and may offer me some education, tips or tricks on how to help my beloved son.  Instead, what I saw during this documentary was a lovely psychologist who is clearly fascinated by the condition and has studied it for many years.  She demonstrated the amazing skills of those with autism who demonstrate special gifts - human calculators for example - and those who manage to find ways to cope in the world despite their reduced social skills, showing us actors and people in relationships.  There was one, and only one, man who is at the more severe end of autism who struggles to communicate and cannot live independently.  He was highlighted with particular interest because she had met him when he was a child when professional understanding of autism was very different.  Then, there was a fascinating segment on tracing examples of autism in history.

But there, the documentary stopped and I was left wondering where the rest of it was.  What I saw on the screen were overwhelmingly the high functioning individuals who appear to be 'just a bit quirky' but find ways to get on with life and adapt to the world.  

No where - no where - did I see my life or the lives of so many families who live with autism.  No where did I see either demonstration of, or even mention of, autistic individuals who have meltdowns, remove their clothes in public, "wander" or "elope" - as in escape from their parents or carers and walk for miles upon miles and in some tragic cases, lose their lives as a result.  Only the one case of the 57-year-old man who cannot live independently and has minimal communication skills demonstrated to me that autism can be in any way debilitating.

This program was a start - it began by humanising people who experience autism and demonstrating that many are high functioning individuals who find ways to adapt to their condition and cope in the world.  It celebrated the people with autism who have the most amazing intellectual gifts and showed us that autism is not to be feared or shunned....  

But this documentary would have been better titled, 'Thinking About Autism', it didn't show me what 'Living With Autism' is like.  It didn't show my life or the lives of so many others at all.  If anything, the outcome of this documentary could easily lead to a misconception that autism "isn't that bad" and that if those affected with it just adapt themselves, they will get on just fine.  In their review of the program, The Independent said:

"We learned, for instance, that while living with autism presents difficulties, it needn't be tragic." 

But this is precisely the problem.  No, living with autism needn't be tragic.  My son is not a tragedy, he is a whole person whom I adore.  But living with autism presents far more than "difficulties".  So now we need part two.  Autism is a spectrum for very good reason.  It isn't just about those who have 'rainman-like' gifts - it can also be an awful and debilitating condition that isolates those who suffer with it and causes excruciating stress for their families.  Autism is not a tragedy, but nor is it an interesting little quirk.  Autism is a lifelong condition which can be utterly debilitating and life changing for those who are diagnosed with it and for their families.  

I did not see any element of this debilitation in this documentary and that is tragic.

7 comments:

  1. I agree Charlotte. I have a 44 year old son who is severely autistic and lives In a Home near me. The programme in no way reflected his struggle to understand the world we live in and the stress that we as a family have been through and still experience and always will do. I do also have a grandson who has aspergers, and is very bright, but still has the daily problem of living with his "quirkiness" and understanding social skills that we take for granted but which brings it's own problems in a mainstream school. Unfortunately, the presenter, although sympathetic and extremely interested In Autism, observes it rather than empathises so concentrated on those with so called "gifts "which are just a manifestation of the way the brain is wired within the condition.

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  2. Thank you for your comment, and I think you've hit the nail on the head - the psychologist is extremely interested in autism. In itself, that is great because more study will help us to understand the condition in time, and it's also important to know that people with autism do cover a wide spectrum which isn't just about the severe end of things because that might help with areas of exclusion. But to not even show the severe and debilitating end - which quite clearly you have been living with for many years, seems a massive oversight. So many autistic people really struggle with daily life and so express this through their bodies in ways many observers find difficult to understand. It seems to me that this is crucial to highlight and explain what's going on. I really do wish they would do a 'part 2' to cover this side.

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  3. The thing is, you don't live with autism. You live with the effects of having someone with autism in your life. The people in the programme were autistic. THEY live with autism, parents and families don't. You have literally no idea what it feels like to be autistic or live with autism. You know how it feels to live on the outside of it, unable to fix things for your son. That's an entirely different ballgame.

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  4. You are absolutely right - I am not diagnosed with autism and so on that basis, I truly don't know what it feels like to be autistic. I do however know how it feels to live with autism because I live with someone (whom I love very deeply) who does have autism. So yes, it was good - very very good - to hear the voices of those who are diagnosed with autism being able to describe part of their experience. It was very good to hear them speak instead of hearing others speak for them - as, sadly, so often happens to people with additional needs - the parts of the program that were featured were excellent. The thing I didn't like was that a huge part of autism that should have been in the program was, in fact, left out.

    So what does it feel like to be an autistic person who can become so overwhelmed by sights, sounds, tastes, textures (etc) that the only available option to cope is to have a meltdown, or to rock or flap or other strategies that autistic people use? These sights, sounds, tastes and textures are things that other people may take for granted and so when they see an autistic person who cannot tolerate them using these coping strategies, far far too often they label that person as 'weird' or heaven forbid, that awful 'R' word.

    So where in this program was there space for these people? Why didn't we hear their voices or see their bodies? Why weren't we even told that they exist? Of course, many people at this end of the spectrum struggle to communicate and don't always have the vocal abilities to help others understand them, so if that was the case then where were the voices of those who love and care for these autistic people?

    You see at the moment, my son cannot speak for himself. He cannot express his needs and even as his mother, I struggle to understand what he wants me to do for him. But I have a very, very high motivation to work it out because I love him and want the best for him. But as he grows, will others in his world have that same motivation? When he cannot speak for himself, will others speak for him? Will others try to understand him? Or will they label him?

    As 'Part 1' of living with autism, this program was good and made some very important and helpful points. What I want now is 'Part 2' - I want to see the other end of the spectrum, I want someone to help society try to understand it. I want to hear the voices of autistic people at this end, and if they cannot speak, then I want to hear the voices of those who love them.

    This program didn't do that so for this reason, as a standalone, one episode program, I believe it failed.

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    1. I suspect from the BBC's perspective, the last programme they showed on autism was Louis Theroux' Extreme Love programme which was about the end of the spectrum you're talking about and mothers/families rather than the voices of autistic people, so you've had your part two or balance in their view.

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  5. That's really interesting and I wasn't aware of that program, thank you for telling me about it. I will definitely search it out. Perhaps then it may have been helpful to use an announcer to link the two either at the beginning or end of the program to make this clear. If that had occurred than I would have reacted very differently to this program.

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  6. http://wearelikeyourchild.blogspot.co.uk/2014/05/a-checklist-for-identifying-sources-of.html

    Is this any help, Charlotte?

    And sorry for the lateness.

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