A Two Way Street: Charlie Teaching Me
May 13, 2006 by Kristina Chew, PhD
Filed under Health
A “special report on living with autism” in the Norwich Evening News (UK) notes that
Living with an autistic person can put a huge strain on family life as members struggle to cope with the demands and frustrations the disorder raises.
The report is told from the first-person perspective of Michelle Mould from Long Stratton, about her 11-year old autistic daughter, Rosie. And while life with autism can have many difficult moments for everyone, I think it is important to note, in the words of Kassiane,
Everyone knows, intuitively, that having a family member who is “different” can be difficult. So why did we need to hear siblings whining (again)? Everyone has sympathy for the poor deprived siblings of autistic and other disabled kids anyway, reading them piss and moan about how their autistic brother or whoever embarrasses them is not how I want to start my day. Or end it.
So my turn:
ALL Y’ALL AREN’T THAT EASY TO LIVE WITH EITHER. (The Rettdevil’s Rants: Siblings in the NYT. Ugh.)
It is impossible for me to see the world through Charlie’s eyes and neurology, but my suspicision is that us NT, non-autistic types can be quite a strain on autistics.
This is how Michele Mould describes life with Rosie:
Wednesday, May 3
…………….I notice that she keeps pressing a finger on a tooth. Is this a baby tooth that is being pushed out by the adult tooth? ……………….
Most typical children will have learnt to deal with this by the age of 11.
My child still reverts to the infant state of crying to show discomfort. So a child who can read at year four level and who is capable of speech now reverts to the baby-like stage due to sensory perceptual differences.
Monday, May 8
Rosie is learning to talk on the telephone today. It is lovely to hear her voice and the words said so beautifully.
“What are you doing today mummy?” she asks me………….
………………..
I feel very proud of my clever daughter. I know that with the right care and input she can achieve so much. I am sure she will be learning for many years to come, but then so will I.
Learning for autism parents and autistic children is a two-way street. It is a cliché, but Charlie has been one of my best teachers.
No offence to Mrs Mould, but the way she writes about her daughter, to a competent adult autistic who tends to call things the way she sees them, is, well, a bit, MOULDY.
The mould I smell is a bit well … patronising.
I get that she’s proud of her daughter.
But the first and second posts which you juxtaposed together really bring that home for me.
Maybe Mould and Rosie can explain and defend themselves. We have to do this every day. It’s no help to living in the world.
I often wonder if my writing about Charlie seems “patronizing” or if I’m being too presumptuous. I was really struck by how the reporter made such a big deal about how much of a “strain” raising an autistic child is and immediately remembered Kassiane’s post.
Not usually.
I’ll call you on it when it does sound presumptious.
I love ALL your work on Charlie and recommend it everywhere.