08/10/2010

Portraits of Autism #10

I haven't told everyone who knows us about Max's autism yet. I sort of assume the word will have gone round. And by now, if someone doesn't know, it takes me by surprise. Last week I bumped into an acquaintance at the bus stop and she remarked on how much better Max was speaking now. I said that yes, he'd made a lot of progress. And then she came up with stuff about how he must have been confused by our use of three languages.

I said no, it's because he's autistic. Lo and behold, she didn't know. Her eyes opened wide, she took a step towards us, hands outstreched, palms upwards. We'd just informed her that a tragedy had struck our family. She was confused and wanted to make us feel better. 'But he looks so normal', she said. 'And he's very clever.'  Yes, I said. Autistic people are not abnormal, and some of them are very clever. I was probably a bit short. It had been a long day. I'm sorry for it as her reaction came from the heart. It was well meant.

For a lot of people - including most of us parents, for a few weeks after we find out - an autism diagnosis is a tragedy. An autistic child is perceived as a failure and a liability. A failure not because parents could have done better and produced a more 'normal'child, but because people feel that a child with autism will never be happy or fulfilled. That child's future is already crossed off in black in their mind.

Now, I don't go for autism 'cures' and all that claptrap. I fail to see how a condition that is fundamentally a set of facts about how the brain functions could be eradicated. As I wrote in a previous post, the closest to something resembling a cure you can come to is that you learn to deal with sensory overload, learn to behave as neuro-typicals would, you learn to respond in certain ways and you learn to suppress inclinations to behave in ways that would be perceived as weird or disruptive.

But none of that means that I believe my child's future as an autistic adult is hopeless. Except for the most severe cases of autism, there's really no reason why an autistic adult shouldn't leave a fulfilling independent life. Sure, they're going to have problems that neuro-typicals don't typically encounter. And that's to do with the fact that they'll be part of a not very well understood or accepted minority.

So it's not rare that I get the suffering silent stare when I tell people my son has autism. By contrast, if I try and talk to them about actual problems we face because of his autism they tend to trivialise them.
- We have sleeping problems, I say. 
- So do we. 
- Potty training is hard. 
- Yes, it is for all of us. 
- He doesn't like to go to school. 
- Well, lots of children don't. 
- He won't brush his teeth and has to go to the dentist. He has big tantrums. He's not speaking well.
- Yes, yes, we have all these problems too.
For each of these problems people will tell me that their children are going through exactly the same thing. Well they're probably not, not all of them together, anyhow. Not unless their children are autistic too.

Take the tooth brushing thing. Throughout his early childhood Max regularly got abcesses because of his teeth. At the dentist, we were told he had to be operated under anaesthesia. They got pissed off with him because he wouldn't stay still enough to take an X-ray. They couldn't understand why we wouldn't just make him. They took out four teeth and repaired several others. When we went back to have placeholders put in his mouth so that the teeth wouldn't move around too much, he refused to open his mouth. So now god knows what will happen.

Take the tantrums. Autistic children have meltdowns, not tantrums. They're brought on by their inabitlity to cope with the sensory input from the environment. They're unstoppable - really - and often violent. The only thing you can do about them is try to prevent them from happening by controlling their environment, and, if you can't, then try to make sure they don't injure themselves or others. Max broke my glasses twice. I've had countless painful bruises. He's had marks on his forehead from the banging.  He's a lot less twitchy now about noises and crowds and things, and a lot better at keeping his cool, and the tantrums are rarer and shorter.We' re breathing again.

Potty training is hard for every one, is it? Well, I just got Max sitting on the toilet every evening this summer. He hasn't had soiled underwear for going on for 14 weeks now. He's eight. I can tell you that before that we washed a lot of dirty knickers.

The sleeping thing isn't resolved yet. He still needs me to be with him as he falls asleep - in our bed - and he wakes up every night and moves from his bed where we transported him, back to ours. We play musical beds all night, and we're considering buying a camp bed to make life a bit easier.

He really likes school this year. It's the same school as last year - same class, in fact, he's now two years behind, and he's gotten used to it. He goes willingly every morning. Last year, and the year before that, there were some days he didn't want to go. If we tried to make him he would scream, then meltdown. There was nothing we could do. One of us had to stay home, rearrange meetings until we could get our childminder to come and take over. We were exhausted by the impredictabity of it, and it didn't help when people wondered why we simply didn't make him go. Or lock him in his room with nothing to do so he understood not going to school was not going to be fun. He couldn't hack it. He did his best but some days it was too much. Punishing him at home probably wouldn't have worked, even if we'd been willing to have him scream the whole day long (which he was perfectly capable of doing, he has very healthy lungs).

Our life isn't a tragedy because Max has autism. But it's been hard. And it helps if people understand that Max isn't some lost soul who'll never have a proper human life, but that he's a little boy who's struggling to deal with every day things he's expected to learn to do. Our difficulties are trivial, for the most part, in that they concern details of every day life. But that's a great part of what autism is about, not being confortable with the minutiae of what every one else regards as normal. At least, that's what it seems to be about for our son. *

* I seem to find myself carried away by generalisations when I get stroppy in writing. Please remember tbat autism is spectrum, and that people who are on the spectrum are very different from each other.

***

At the centre where I wait for Max, a little boy just finished his lesson. His mother and grandmother crowding around him, trying to make him say 'bye-bye' to his teacher. He won't say it, then he'll wave the hand but say nothing, then he'll say it without looking at the teacher. Eventually he gets it near enough right and they let go. The teacher leaves, the grandmother walks out. I say 'bye' to the boy. He stops in his tracks, turns around, slowly, looks me in the face, breaks into a smile and says: 'bye-bye', with a wave. His mum bends down to him and asks him to use the proper Turkish word. 'Say 'Hosce Kalin, Hos-ce Kal-in' '.



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10 comments:

Anonymous said...

I can empathise so much with your post. We've been through this too with our 13 year-old son. Life does get better (or does it just get different?), I promise!

As for the dentist, find a new one quick. You need to find one who provides RA - relative analgesia. It's a form of gas and air which helps the child relax, but doesn't make him sleepy or anaesthetised. Jonny has this at the dentist and is no trouble at all these days. The RA isn't long lasting, and is easily reversed by just pumping pure air. He has no worries about dentists now, even though they often do lots of work as he has no enamel on his teeth (something which quite often co-exists with another special need, apparently).

jomica

frogpondsrock said...

Hi, I came here from twitter. Thankyou for this post. My 4 y/o grand daughter Amy has Aspergers. My Daughter is being very patient with me as I ask the same questions over and over, until all of Amy's realities sink in to my stubborn brain and I understand the challenges Amy is going to face.

Posts like yours help me to readjust my thinking and take the pressure off my daughter a little bit.

cheers Kim :)

Kebeni said...

i am sobbing. You have basically written a post about my boy. Well, apart from the potty training, he has been out of night nappies for almost a year and he is also 8.5yrs. Thank you, it does help to know that there are people out there who understand, who don't think you are 'babying' your child and letting them do what they want to do without discipline. Sometimes it is like walking on eggshells with Beren. We are going thru the rounds of assessment next month, but I have known from when he was a toddler that something was different. thank you and love and blessings to you

Sandrine said...

Thanks Jomica, that's really useful advice. Things are a lot easier now than they were even a year ago. We're seeing a lot of changes in Max as he grows up and we learn to help him better.

Sandrine said...

Kim, it made a big difference to us that our family and friends knew something about autism, and actually went out and found out more. It took a lot of pressure off us to find out they already knew a lot of things and that they didn't mind doing their own research. Good luck to you and your daughter and your grand daughter!

Sandrine said...

Kebeni. Sounds like you've had a tough and lonely time dealing with your son's issues. I really hope the assessment will give you some answers and a way forward. I know what you mean about walking on eggshells. There are times when you really don't want to trigger a meltdown! Good luck and let us know how things go.

@jencull (jen) said...

You have described my child and other peoples reactions to him so well. I get cross when people dismiss the issues because like you say, some children will have some of the problems but they won't have ALL of them ALL the time (unless they are on the spectrum!). Jen

marketingtomilk said...

Another beautifully articulated, sensitive post about your experiences of autism. I am humbled. Truly.

M2Mx

ps you only need to look at the comments to see how important these musings are for many of your readers.

Sandrine said...

@jencull - we're all going through this, aren't we. Both pity and the trivialising. It's infuriating sometimes but I have to balance it against the fact that so many of our friends and relatives have taken the trouble to become informed and give us plenty of support. Hopefully when our children are older they'll be able to speak for themselves and make things a bit clearer for the rest of the world.

Sandrine said...

@m2m Thank you! Thank you for your regular lovely comments. I do love it when comments make me feel that I'm doing something useful by writing these posts.

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