06/06/2010

AN OPPORTUNITY

I have no idea why, but a friend of mine here in Slovenia asked me to write an article about Autism. So I will! I like a good challenge...


The reason it's a challenge is because I don't feel myself to be any kind of authority on the subject. My experience is limited:
I spent a year of my life working with young people for a charity in England called the Prince's Trust. My job was to recruit 15 young people (aged 15 - 25), and then lead them through a 12 week course, which included many different things, for example a two week community project, a week of team building exercises in Wales (canoeing, rock climbing, bridge-building), and a week with the fire brigade. I ran three such courses, and on one of them I recruited Rosie, a 16 year old girl with Asperger's syndrome - a form of autism...




I have seen two clients with autism. Both of them came to me because their parents wanted me to see them. On both occasions, I warned the parents that I was not prepared to see their children with a view to 'healing' them, but they insisted on coming, so I agreed. Both times, I felt strongly that there was nothing 'wrong' with the kids: I wanted to work on the parents instead!


That's my experience of autism. But I suppose that I do have a strong opinion about it, so here goes...


There is nothing wrong with someone who has autism. Yes, they are different from what most people call 'normal', but since when was that a bad thing?
Somehow, our society treats people who are different with the view that we must 'fix' them. It is so, so sad.
There was a time when people who were different were treated with respect. Now all too often they are treated like 'freaks'.
Let me tell you something: no-one is normal. You are not normal, I am not normal. There is no such thing as normal. Variety is something to celebrate, not something to be afraid of! Variety is reality: not two things in this universe are the same. Diversity is universal.


Rosie, the girl with Asperger's syndrome, was to me quite beautiful. She was confused, angry, paranoid... many different variations of insecurity. But underneath all of those things, she was so amazing. She had the courage to speak the truth in every situation. That's actually not normal at all - it's completely extraordinary!
One of the 'symptoms' of asperger's is that they don't know how to lie. They don't understand deceit. If you ask someone with Asperger's if they are lying, they just get very very confused. They cannot comprehend the meaning of it.
I found that quite admirable, and I think that it's something our society could learn a lot from...


And you know what - did her insecurity come from her condition, or did it come from the way she had been treated all her life - as someone that needed to be changed? Can you imagine, if all your life people had been trying to 'fix' you, constantly, day in and day out. Never being accepted for who you are?


A wise man once said:
"what we need, is for someone to come to our ear and say: 'you are you, and I love you'. To be accepted as we are - that is the beginning and the end of life"


Imagine if our society welcomed and encouraged people to be different. Imagine if you could do whatever you felt like doing, just because you felt like doing it! Imagine being able to wear whatever clothes you wanted... or to dance naked through the streets. Imagine being able to express whatever you wanted, however you wanted, whenever and wherever you wanted. Imagine being able to live in whatever way you wanted... and to be accepted for it.


But we are conditioned all our lives to 'fit in', to stay within certain limits, not to upset the 'order' of society.


Rosie didn't make it past the second week of my course. It's actually a fairly amusing story so I'll tell you: the second week of the course we all went to Wales for the 'outward bound' team-building week...


It's a 6 hour drive, and by the time we get there, I am exhausted already. (The other kids on the course are not an easy bunch, to say the least - drug problems, ex convicts, a pregnant 16 year old, and so on, so the 6 hour bus drive seems like a lifetime - I have to constantly 'remind' them that it's not ok to: smoke on the bus / fight / throw each others belongings out the window). And when we arrive, Rosie refuses to get off the bus. She announces that she is
"ready to go home now".
So I sit with her and explain that we've just arrived, and that driving back to London for 6 hours is really out of the question. But - and know this about autists: it's very hard to get them to change their minds! In the end, she tries to walk back to London! I walk with her for an hour, through fields and woods, until she gets too tired to go on, and then we walk back together to the bus. In the morning, I take her to the train station, and she goes home.


That course was simply too much for Rosie. I was actually surprised that she made it as far as she did. But I do wonder...


What would Rosie and other autists be like if our society really accepted them as they are? And it's not just society at large: it starts at home. I'm sorry if you are a parent of an autistic child reading this, because what I'm about to say may not be easy for you to hear, but I'll say it anyway:
In my (admittedly very limited) experience, parents are often extremely afraid, stressed, and un-accepting of their children. Look, it must be the hardest thing - every moment of every day is an almost unbearable challenge - to be the parent of an autistic child is INCREDIBLY difficult. I'm not making a judgement, because I have no idea how I would handle it, day in and day out...
But I do really wonder how it would be if the parents, and society at large, would be totally accepting of their autistic children.


There is a truly wonderful book called "And there was Light", written by Jacques Lusseyran. It's biographical: he was blinded at the age of 6; became a leader of the French Resistance in world war II, was captured and sent to Buchenwald concentration camp, which he survived.
He describes at the start of the book how his parents not only accepted his blindness, but encouraged him to live a completely normal life - and as a result, he was able to 'see'. He did not see in the same way that a sighted person sees, but he 'saw' light. This was how he was able to survive 15 months in a Nazi camp. He explains that as a child, he was able to climb trees, run through fields, and do all the other things that his friends were doing, because he wasn't afraid: his parents encouraged him to be fearless. They didn't treat him any differently after he became blind.
He also writes about how sorry he felt for other blind children who were always being told to 'be careful', and being overprotected by their parents. They became imprisoned by their blindness; victims of other people's fear.


So I do wonder whether it's similar with autism. Perhaps if we were able to really accept autism; but not only to accept it; to actively support and encourage autistic children to express their own unique abilities and gifts. To truly LOVE them as they are. More: if we were to treat autistic children the way we should treat ALL children: as our teachers. I am sure that if we were able to do that, our society would benefit even more than those children would.


Kahlil Gibran said:
"Keep me away from the wisdom that does not cry, the philosophy which does not laugh and the greatness which does not bow before children."
We must bow before ALL children. When we look at a child and see something 'wrong', we create a tragedy. How can any child be wrong?


Jacques Lusseyran said:
"Light is in us even if we have no eyes."
Well, light (and intelligence, and beauty) is in the autist too. WE must have the eyes to see it, and to learn from it, because autism, like everything else in this world, IS THERE FOR A REASON.


*Another great book is "The Curious Incident of the Dog in the Night-time", by Mark Haddock. It's an award winning novel written from the perspective of a 15 year old boy who has Aspergers Syndrome.

14 comments:

nothingprofound said...

The parents of autistic children and children with all sorts of disabilities understand the truth of what you've said here. The rest of the world is behind and has to catch up.

Ben Ralston said...

Thanks for the comment NP.
The problem is fear. There is just so, so much fear in people. One of the two clients I mentioned came with his mother. She sat down and told me how afraid she was for him and his future...
and then I spoke with her son and he just mirrored her. But like it was a game - he was 'playing' at being her fear. It was very interesting, but also very sad to see a family caught up in that web.

coolingstar9 said...

Ben,
With our love, those children will surely be more confident.
It is good to contribute our very best to those needy.
Nice post.

Ben Ralston said...

Thank you.
Yes you're right, in one word it's just all about love.
We must 'clean' ourselves of our fear, so that our love can support those that need it. It's the only way our society will become more caring. That cleaning is what my work is about.
Ben

coolingstar9 said...

Ben,
Yes, I am learning to clean up my waste on my mind.
Happy to land to your blg site about the health issue. I like health topic.
I will slowly read akk posts and make comments day by day.

Ladygoodwood said...

Ben,

This is a great post. I am in the UK and know well the work of the Prince's trust. I do sympathise with your sojurn in Wales!

I can't help but feel that we have moved into a culture where any deviation from the norm has to be medicalised and assigned a label. Yet the norm is just a social construct subject to contestation. The dominant voices remain with the professional opinions. There is no room for holistic spiritual pathways within the mainstream.

Our education system is such, that unless a child is statemented with a label, they can't access any extra support. So we have kids labelled on the autism scale (includes aspergers), we have kids with AHD, sociopathic syndrome, aggression trait syndrome and a myriad of others. Yet only a minority really need specialist intervention.

I see clients who are full of anxiety about their child, yet they are unable to see that the child is feeding off the parent's behaviour and developing their own patterns of learned behaviour - perpetuating the cycle of anxiety.

The autism scale has so many colours and
reinforces difference rather than valuing diversity. That is the whole problem with medicalised models - we label and stereotype rather than offer inclusion and embrace difference. The whole emphasis is on trying to maniplulate behaviour change to 'acceptable norms' rather than accept and rejoice in the child just as they are and value their strengths.

Ben Ralston said...

Thanks Lady G,
Great comment - you managed to sum up my feelings much more succinctly than I did!
"rejoice in the child just as they are"
THIS!

Saif said...

This is a really nice article. And I agree with what you're trying to say. I have very very limited experience with autistic children (lesser than you), but I know one day in the future I am somehow going to be actively involved with them.
It's true that autistics should be accepted as they are. Why try to make them fit-in in the "normal" world? Just let them be as they are.
Rather than sympathizing with autistics, people should rather empathize with them. In this way they'll be doing their best while interacting with autistics. The moment they show sympathy and react strangely to them, the autistics become more fearful and keep a distance. It also hurts the parents if people overly sympathize with them rather than empathize with them.
It was a nice read and hopefully people will learn something from this article.

Kaori said...

Excellent post, I recently just posted about autism on a similar concept but I wish I had the experience to support the cause. Thank you, This post was really inspiring!

Ben Ralston said...

Hi Saif,
thank you so much for your thoughtful comment. Somehow I didn't know you'd left it here until now, or i would have replied earlier.
I completly agree with what you say about the 'sympathetic' reaction, and how it makes autists more afraid.
i think that's because there's something inherently 'untrue', or 'dishonest' about that sympathy usually, and the autist sees straight through it.
In this way, we can learn a lot from them: about being more true, honest, and real. Which is about the most important thing in the world if you ask me.
Thanks again for your comment.
With love,
Ben

Ben Ralston said...

Hi Kaori,
Thank you. I'm just going to bed, but I've added your blog to my list, and I'll read you soon. Thanks for being inspired!
Love,
Ben

Janene Murphy said...

As a mother of three kids with Asperger’s Syndrome, I completely understand what you’re saying. I also understand the fear you see in other parents. I know my kids, love and understand their uniqueness, and also recognize the special talents this ‘disease’ has given them. I also see the bullying and the social isolation that comes with it (junior high – ugh!) The goal I have more my kids is that they grow up to be happy, productive individuals who are comfortable with themselves. Being accepted by others for who they are is a part of that. They DO get the fact that they are different. What they DON’T get is why that matters. I’m with them. :)

BTW, my middle son has recently decided to experiment in the lying department. I’ve got to say, it’s HILARIOUS!!

Ben Ralston said...

Hi Janene,
I am sure you are doing a wonderful job of teaching your children that it doesn't matter. Let's face it, that job that you've got is a bloody tough one! I don't know how I would cope with one kid with Asperger's, let alone 3!
Keep up the good work!
Withlove,
Ben
ps - by the way, I looked at your blogs hoping to find something personal about your life dealing with these issues: would be great to read about your son's experiments with deceit! Did you write about that at all?

Ly0nTurtl3 said...

Janene, I too am interested in your son's experiments with deceit. I heard somewhere that Asperger's children/people can't lie, or have a very hard time doing such. I'm possibly being a hypochondriac, but many of Asperger's symptoms hit home for me..

Post a Comment