Saturday, 30 January 2010

I Am Autistic: Telling Lyla

In my last post, I touched on the fact that Lyla mentioned she was autistic. I thought it was worth sharing how and why we told her about her autism.

Encouraged by a wonderful child psychologist who'd been helping me with ideas on Lyla's challenging behaviour, I took the decision to tell her about her autism. It had become clear in my discussions with he psychologist that Lyla was a lot cleverer than her language skills made her appear and she was outwitting a lot of the behavioural strategies that we were putting into place.

To compound things, she was attending a failing school in a rough part of Inner London, where she was put in the bottom set and used to get taken out of class 'with the idiot group, because I'm a stupid girl'. Because she couldn't play appropriately with children her age, she joined the 'Monster Gang' at school and would come home every night and hit, headbutt & kick me because she had to 'practice her fighting'. She was an extremely confused little girl and her self-esteem was at an all time low.

She knew that she was different and was finding negative reasons to explain it to herself. So, I thought she'd feel better if she knew the real reason why she found life hard and stopped blaming her poor self. She had autism whether we chose to acknowledge it or not. I didn't want to present it in a doomy, scary way, (that might be related to a therapist in years to come: 'Son- you have Autism'), so I tried to find the most positive way to tell her. .

I came across the book 'I am Utterly Unique' by Elaine Marie Larrson. It's a picture book with an A-Z of all the cool things about children with autism. I liked the explanations because they were things which Lyla could actually relate to and were cheerfully thought-out. For instance, the letter H, 'I am a Happy Helper': teachers of autistic children know that they love to be given a job to do and this can be a good way to integrate them into the class. Other letters I particularly like are G, for 'genuinely goodhearted', O ' I have an Original Outlook' and T 'I Tell the Truth'.

After we told Lyla about her autism (when she was 5), she became noticeably more relaxed and cooperative. It seemed to have answered the questions that were going round in her mind. It's by no means cured her challenging behaviour (although moving to a lovely new school has helped a lot with that) but it's a start. Now she knows, it's not like there's a big secret that we're going to have to tell her about one dreadful day. It's just part of her and our lives. Lyla feels more understood by us too and reading the book together, I can't help but feel a stab of maternal pride at what a wonderful utterly unique girl I have cuddled in beside me.

Saturday, 23 January 2010

Calamity Corner


January's been a very accident-prone month here. Having managed to fall down the stairs on Christmas Day and sprain my ankle, I then outdid myself by tripping over a child's shoe at the bottom of my stairs and breaking the same foot, spraining it and re-spraining the ankle. That was four weeks ago. In typically deluded fashion, I thought I'd be all fine an dandy by now, but I'm not. I'm ankle-deep in physio and am now facing the possibility of an op and a long period of immobility. And all because of a pair of (autistic!) child's shoes. And my own clumsiness! It goes without saying that chasing children around has become a more of a challenge than usual.

It also highlighted to me how hard it is for our autistic children to comprehend unforeseen events. Lyla was terrorised by seeing me fall. Clearly, the books/films/TV she's seen have created the impression in her mind that if somebody falls they're going to die. She was hysterical, crying that she loved me and didn't want to lose me. Nothing I said could comfort her. Whilst lying on the floor in shock, I tried to make light of it and explain it was only a silly foot and that I would go to the hospital and the doctors would make it better. Unfortunately, she couldn't be comforted and was so upset that she just couldn't listen. Mya, her twin, got annoyed with her and told her to shut up as I'd be fine but she responded by screaming she had autism and found it really hard. I found the insight in this comment really heartbreaking. On the one hand, I'm glad that she understands herself but at the same time, it was difficult to see her struggling.

Understanding herself doesn't seem to be enough to help her cope. And this is one of those unforeseen situations in life that we all find difficult to adapt to. Let's hope 2010 brings us all more surprises and less shocks!

Saturday, 16 January 2010

With The Light Pt.1


How surprised was I to find a Manga-book about autism at the bottom of the bargain bucket at the Border's closing-down sale?

Keiko Tobe's book In the Light is fictionalised account of her struggle raising an autistic child. Sachiko gradually realises that her son Hikaru seems a bit different from other children. He is eventually diagnosed with autism. The book is translated from the Japanese and retains its graphic, cartoon format, which makes it quite a visual treat. I can imagine my daughter's being interested in reading it too when they're older. When I've finished it, I'll post a full review- it's worth looking up!

Saturday, 9 January 2010

Drawing Autism


Since I'm stranded at the moment with a broken foot and sprained ankle, I've been thinking a lot about the autism & art workshops that I'll be helping tutor on this year. I'll be getting together with the wonderful Amelia who writes http://101birdtales.blogspot.com about her creative life. Pop over and have a look!

I 've found an interesting new book called Drawing Autism, by Jill Mullen which compiles the work of over fifty artists with autism. I like it because it doesn't concentrate on the artistic savants, like Stephen Wiltshire, who is well-known for producing amazing citiscapes but rather on unknown artists, whose work reflects their autism in some way.

There's lots of good stuff here. But one piece that I found particularly impressive was Rachel Mark's Metaphorical Maze. It is a clever visual representation of how hard it is for autistic people to understand non-literal language. For instance, Lyla nearly got upset the other day when I said her sister was 'crying her eyes out'. This was because she thought that her sister Mya's eyeballs would literally fall out if she cried. This is not because of a deficit in intelligence. It is because her autistic brain takes language at total face value. Another instance is if I ask Lyla 'Can you get your bag?', she will reply 'Yes' and do nothing. This is not awkwardness, she is answering that yes she can get her bag, not understanding that the question implies that she takes action. Instead I would need to ask her, 'Can you get your bag?' and then she would understand. I have constantly check my language to make sure it's clear and concise: too much language is hard to understand for autistic people and cause a great deal of stress. For Lyla, this often means challenging behaviour.

Another piece that I found very beautiful was Marliyn Cosmo's Strung Fairy. She says 'fairies are not quite of this world which I relate to'. I found this interesting as it echoes Professor Uta Frith's theory in her book Autism: Understanding the Enigma that autistic children were historically viewed as changelings or faery-children due to their ethereal beauty. There is often something faraway in the autistic gaze, simply because many autistic people find making eye contact so hard.

There's lots here to inspire. Hopefully we'll also have lots of wonderful artworks to share from our workshop soon!

Friday, 1 January 2010

Autistic Intelligence


I've just read a really thought-provoking post on the blog Autist's Corner.. The post responds to magazine problem-page article where a reader asks the Agony Uncle what jobs he can't do if he has Asperger's Syndrome. This is something I and other parents of autistic kids worry about: The Future: Will my child be able to live independently/ hold down a job/ have a relationship/ be happy? To some extent, the future is an unknown for all of us, but this is especially true if you are new to autism and worry for your child's wellbeing and happiness.

Stereotypically, and possibly because autism is a predominantly male condition, the jobs which autistic people are considered to be suited to or interested in are those in computers, science and mathemathics. This is because these careers deal in predictable outcomes and suit the traditionally-imputed rigid-mindset of autism. Also, they don't necessarily require socialisation. But what if you're autistic and not interested in computers? Or if you're no good at IT? And what if you, like many other autistic people want to be social?

What if your child is more creative than technical? Despite being autistic, Lyla is highly imaginative, to the extent that she seems to live in a whole imaginary universe that she makes up as she goes along. She'll often string together lines or stories from films she's seen or books we've read and pretend this is her life. It seems to me, that maybe this special kind of autistic intelligence is something to be celebrated.

So, it was heartening to read the list of famous people, diagnosed with autism, who have non-stereotypical careers. I've reproduced part of the list here (clearly these people are at the very high-functioning end of the spectrum):

Actors: Daryl Hannah, Dan Ackroyd, John Turturro
Fashion Model: Heather Kuzmich of America's Next Top Model
Musician: Ladyhawke, Gary Numan, Craig Nicholls of The Vines, Courtney Love
Playwright: David Mamet
Athlete: Surfer Clay Marzo, Marathon Runner, Jonathon Brunot

Photo: Lyla making a collage of Matisse's Snail @ Tate Modern
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