Thursday, 26 March 2015

World Autism Awareness Day is coming around again. Why are you still not listening?

When I sat down to write this year's blog for World Autism Awareness Day, the first thing I did was read last year's, which was about asking the teaching community for better understanding and support.

I could write the same bloody article again today, word for word, so little has changed in the past year.

I won't do that, because I want people to keep reading this year's post.

But from now on I'm not going to be diplomatic any more.

I've spent years trying to understand the point of view of people who refuse to consider mine. I've listened many times to the lecture on how these things take time. And I've discussed at great length and on multiple occasions my own personal responsibilities, and the efforts that my daughter needs to make in order to fit in.

But really, now, I've had enough.

I have had ENOUGH.

Enough of talking to people who aren't listening (even though some of them fake it extremely well.)

Enough of asking for the same things, over and over again.

Enough of being told it's my fault, or her fault, or anyone's fault but theirs.

Talking to these people about Grace and other people with autism, and the support we would really like to have, please, is like speaking into a vacuum and watching my words disappear with a silent 'pop' in an airless, unfriendly atmosphere. It's like yelling for hours into a long dark well without ever hearing the responding echo bounce back to me from the bottom of it.

It's driving me crazy. I don't want to do it any more.

So please, you lot, will you just, please LISTEN.

If I was asking for special consideration I might be able to keep my temper a little better. If I, and all those other parents engaged in these eye-wateringly tedious negotiations, were in fact asking for something to which we knew we had no right, we could maybe just about cope with the daily duel.

But we're not, you see. Our children have the same right to an education as everyone else's.

Our children have the right to be included in your lessons and to be supported and taught, just as every other child does. Our children have the right to expect flexibility and kindness and empathy (even while being constantly criticised by rigid, blinkered "professionals" for being incapable of expressing these attributes themselves.)

Why do our children have this right? Because, um, it's the law.

But if that's not reason enough for you, try this:

Our children are ASSETS ( - are you listening yet?) Our society advances when we embrace the non-conformists and the free thinkers and the eccentrics. Our children have a lot to give. They can learn. Help them to find a way to do this that does not insist they first squeeze themselves to fit a template of 'normal' that you've drawn up to your own specifications and which can only result in their failure.

Stop punishing our children if they become too anxious to cope with your demands. Giving an autistic child detention is not going to magically make them understand how important it is to do what you say. It's only going to make them even more anxious, and likely to get it wrong, again.

Stop telling us our children are 'a handful' or 'difficult' or 'playing up'.

Stop telling us we need parenting classes, when you've not had any autism training or failed to understand the training you undertook. (It's not hard to find autism training, by the way. Here's some, right here, from the National Autistic Society which by the way has pages and pages of the stuff.)

And - especially for the attendance officers this one - stop sending us letters about our children's school attendance. Do you seriously think this is news to us? Don't you think we're killing ourselves every day already to get them there? If you want to know what's going on, talk to your colleagues  - yes those ones on the other side of the staff room, say perhaps the SENCo, or the head of year, or the form teacher, or the teaching assistant - before you send us a postal missive demanding that we explain ourselves to you. We've already done that, to every other bloody member of staff.

I know none of this is terribly polite. I know that I'll get told off for being unhelpful. So fine, tell me off. I'm used to it, and so is my daughter. It makes us feel crappy, but we're used to that too.

But this time, when you've finished telling us off, try thinking about what we're asking for. And consider this too: wouldn't you rather just be getting on with your job instead of arguing with us? We know you're all overworked and underpaid. We know you don't want to spend all this extra time and effort on paperwork and phone calls and this-that-and-the-other. We know you resent playing social worker when you're actually trained to be a teacher.

So fine, teach. It's what you're good at, right?

We'll stick to what we're really, really good at, which is parenting our autistic children.

Then you can stick to what you're good at, which is teaching ALL of the children in front of you.

A tip: our job involves tearing up the rule book and adapting our job to best fit the needs of the children we have. It's an approach you might like to consider in yours.

World Autism Awareness Week starts on Friday, November 27 and runs till Thursday, April 2, which is World Autism Awareness Day, 2015. For more information on ways you can participate, click here.

I will be running the New York Marathon in November 2015 in support of my daughter and Britain's National Autistic Society, which provides information, support and pioneering services for people with autism, and campaigns for a better world for them. If you would like to cheer me on, please click here.


  1. I get what you mean totally as the mum of an Aspies 12 year old girl also. She moved to senior school and seemed to hit the ground running. She loved the school and everything about it and it suited her totally. Then, enter the hormonal maelstrom of puberty and now all bets are off. Anxiety has hit her like a ton of bricks, coupled with panic attacks sparked by certain types of activities (such as drama) which she hates. Although I know the school are trying to be supportive and the SENCO is very good, it is the attitude of ALL staff that needs to change. There are some authoritarian "shouty" (her word not mine) teachers who think that Alex Ferguson's hairdryer approach is a magical panacea for ASD kids and it will magically eradicate anxiety. They don't get that she has become extremely good at masking (being ignored and ostracised for her entire primary school life teaches a girl to be invisible). We are now constantly recalibrating our entire family life to manager her mood and the hormonal upheavals of puberty, which has a knock on effect on our other children. It is exhausting as you no doubt know. Life would be made a bit simpler for her in school if teachers and staff could remember to THINK before speaking, as some kids take things literally and DONT get non verbal communication.
    My daughter is incredible. She is gifted (high IQ), funny, caring and amazingly (sometimes overly) empathic. She has difficulty in handling NT communication and working out the unwritten rules of the NT world.
    We are lucky that she achieved scholarships to a very good independent school so the draconian approach to attendance doesn't apply a rigourously, however it is so hard to feel like a horrible parent when you have to compel her to go in when she has had a horrible nights sleep through anxiety and she is exhausted, or when she is in agony due to her PMT and her hypersensitivity to pain/neurological stimuli. Whatever happened to a child centred approach? There just doesn't seem to be one, just a lot of talk about the theory....

  2. Hello paddler, and thank you for your comments. They chime with so very many that I have heard from other parents of Aspie girls aged 12 and upwards. It baffles me that so many schools have good SENCos and solid inclusivity and autism training policies yet don't understand that the expertise needs to be part of a joined-up approach and shared around if it is not to be cancelled out by the actions of other teachers or school officers who are clueless! Your daughter sounds wonderful. Sending love and encouragement to you both.

  3. I had to remove my daughter from her primary school when she was sexually assaulted and the school categorised it as 'play' and her as special needs for speaking out about it. My friend, who trained as a teacher, left when they started calling children 'service users' or 'customers'. We are in very very very strange times where caring and nurturing professions are taking on business speak to become like a business which makes people into products. Your child and my child are defective products in their mind.

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