Well aware of Autism

2013-08-24 21.12.22-1Occasionally I weaken from my daily diet of museums and exhibitions and offer up something a little bit more personal. I always find these blogs harder to write but they often feel kind of therapeutic too. Today is Autism Awareness Day, for a day, a week, a month, the focus turns to Autism. My thoughts have been on autism a lot lately, and diagnosis too for various different reasons which I don’t think I am quite ready to talk about yet. Probably a little bit of self-denial going on there but some things take time.

People always say to me when they hear I have an autistic daughter, “Oh you must read ‘Curious Incident of the Dog in the Night-time‘”, I guess it is the ‘Rain Man‘ for a 21st century generation. You know what? I haven’t read it. I am sure it is great but there comes a point when you just don’t want to read any autism books, not even for ‘fun’. When my daughter was diagnosed a few years ago now I tried to consume everything. Tony Attwood became my personal physician. They were very medicalised books, symptoms and diagnosis. Helpful, but the spectrum is so varied they can be a little scary too, whilst grateful I had a daughter who could talk, that didn’t necessarily mean we were communicating.

Now for the first time in a long time I have read an autism book, NeuroTribes by Steve Silberman. Lauded and praised left right and centre, it is a remarkable book. I think that with some books it depends at what point in your life you come to them. If I had read this just after diagnosis I am not sure how it would have affected me. I read it now and it gives me, not answers exactly, but now I see that the story of autism is a long and complicated one. I am just one of many mothers and fathers, we are all individual, all different, as different as the children we have brought into this world. We have all looked for answers in different ways, dealt with things differently, sought different medications, support, therapies. But equally there are strong threads that pull us together, doing what we can, trying our best, hoping for a better future.

Neurotribes has shown me that autism is never as simple as a label, never as easily defined as a set of traits, a tick-box exercise. It can feel like that when you are going through diagnosis, it can feel like a lot of hurdles we need to jump through to be eligible for support. Even with a diagnosis you still have to fight to get what you need and sometimes you don’t even know what you need, you just know that you are struggling.

I think when you get a diagnosis, you are looking for answers – I just wanted to know why? But that answer is not in any book. If you start looking for why, you suddenly leap on every Daily Mail article and pseudo-scientific study. When my daughter was diagnosed we were just coming off the back of the MMR vaccination scare. But when you are in this weird world where everything is not as you imagined it to be, you can suddenly see answers where there really aren’t any. Daughter no 2 didn’t have the MMR at a young age, she was in a spica cast for hip dysplasia and I just couldn’t put her through that as well. So she got her injections much later, daughter no 2 doesn’t have autism so did that make a difference?, What did I do wrong? Was it those occasional beers I had when I was pregnant, was it the pollution in the air, was it living near the town tip. Diagnosis allowed me to point the finger elsewhere, externally. Up to that point all my reasoning was internal, I must just be the worst mother in the world, how can I be getting this all so wrong?

People sometimes ask me “When did you know your daughter was autistic?”, and you know it was never as simple as a single moment or behaviour. There was a slow gradual realisation, but what I do remember as clear as day was the moment I knew I had to ask for help. We had skirted around it for months and months, agreeing one moment then changing our mind the next. To go to the doctor would be making it all official, it took a long, long time to come to that point. There were certain things my daughter did, I had read all the parenting books, how to raise a happy confident child, I had tick charts and reward charts. I showed unconditional love, I was firm and stuck to the rules. I kept to the plan but nothing made a difference. I ran out of answers and I ran out of places to make sense of my role as a mother.

I really did think I was a bad mother, how could I possibly have got it so so wrong. There are so many meetings and moments I could write about, but I don’t think I am ready to do that, if I ever will be. Also my daughter sometimes reads my posts and she keeps me honest and on my toes. But I do remember going to the doctor finally, finally plucking up that courage to hold up my hand and say I can’t do this, I need help. He referred us to parenting classes, it was a confirmation to me that I really was a bad mother. It took a long time before I was ready to go back, and with the support of my daughter’s school, we eventually took the next step.

I have broken another habit recently, not only reading an autism book, I watched an autism programme too, the BBC television series the A-Word. It is good, very good, it made me laugh a little, it made me cry a little too. I don’t often want to watch autism programmes, it is too near to real life, too close to the bone, I don’t always want to think about the maybes and the future. I am living in the now, day by day. But as much as I do this, Neurotribes has shown me how those day to days have been strung together over time. How so many brave pioneers worked so hard to make a place in this world for children, teenagers and adults who are autistic. They simply are who they are, sometimes we don’t understand their behaviour, actions, we struggle to communicate, it can be hard, infuriating and sad. Sometimes it is angry and hurtful. But equally there are beautiful moments, happy, happy times.

Those happy times are so clear and vibrant in my memory. I don’t think it does any good looking for answers. Sometimes you just have to deal with the here and now. Perhaps I am still a little scared of the future, but it will come and things will change. I am grateful to Steve Silberman, he has laid out the path behind and I think I am more optimistic for how that path will continue in the future. Maybe I don’t have to just live by each day, I can take comfort in a future that will be more accepting and understanding. Perhaps a future I can help shape too.


NeuroTribes by Steve Silberman is shortlisted for the Wellcome Book Prize 2016

Monday 4th April 2016 10am sees the launch of Kids in Museums Autism Resource which I have helped produce.

Comments 13

  1. Read with great interest! Going through the diagnosis process at the moment with my boy – so far it’s 10 months since first referral and tho he’s had assessments and questionnaires we are still waiting for an all party meeting to decide whether to refer him to the autism panel – which could then take 6 months. He’s almost 9 now and behaviours I put down to ‘being a boy’ or ‘he’ll grow out of it’ look more and more like autism. But then maybe I notice things as I learn more out the array of behaviours. However, initial reports from the professionals suggest he will be diagnosed eventually with some level. In a strange limbo state of having a boy who may have autism but until a diagnosis unable to access formal help.

    A visit to a museum yesterday highlighted it even more to me – bus trip was noisy, crowded and unsettled him, entrance to museum had bright white strip lights, and when he finally got in the gallery was more interested in a fan and feeling the breeze and then he hid in a corner out the way for 5 minutes before he was ready to engage. The more I learn about autism the more symptoms I seem to notice – but then I worry I am looking for issues now!

    Thanks for writing your blogs and I will look out the book recommendation.

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      Hello Helen, Thanks so much for your comment. I know the limbo period is so difficult. I hope you get the support you need, please let me know how you get on. It never changes who they are but does seem to open some doors to support. Do let me know what area you are in, (tinctureofmuseum@gmail.com) more and more museums are running early openings which make it a lot easier to visit. They keep the numbers low and often put on specific events. There are a few museum events on my blog but there are a lot more out there https://tinctureofmuseum.wordpress.com/autism-in-museums-events/ Good luck I hope the process goes smoothly. Tinc

  2. Yours is one of those posts where leaving a short reply here in the comments section just wouldn’t begin to cover everything I thought and felt whilst reading it. I feel that I could sit down with a cuppa and chat with you at length about everything you have mentioned in this post. Instead I will just say it’s a great post and I hear you!

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      Thank you for your comment. I always worry about putting the personal stuff out there, it means a lot to get lovely comments. I think when I do I realise so many people are going through the same thing, listening and reading about others can help. I am writing my comment and having a cuppa so I am virtually having a chat with you! Tinc

  3. Thanks for writing this. Its all so difficult isnt it, I’ve written several blogs recently both about myself and about the children which I haven’t published for various reasons. However, it helps to analyse things on paper if you know what I mean. I’m currently battling for recognition of diagnosis (dont ask!) for one of my children. Its difficult and especially hard when you’re the sort of person who like to live for the future and its hard to see positives. Not sure if that made sense, but hey ho! The main thing to remember is that however hard it is our children are all fantastic and in seeking support for them its good to seek support for yourself. I think i’ve realised this slowly, my parenting difficulties are not a reflection of my parenting, its just the way it is. Not sure if any of that made sense really, but its half term and I cant think straight! 🙂

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      I does make sense, a great deal. We are just about to start the diagnosis process for our youngest child, so many conflicting emotions I am not sure where to start. I think that is the thing, we are so focussed on them we often forget about a bit of support for ourselves. Thanks for your comment and good luck 🙂 Tinc

  4. Thank-you for sharing and for working on the Kids in Museums autism resource I am determined to offer my interactive sensory storytelling to all families in my local museums.

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  6. Just discovered your website today. Thanks for all the useful infotmation. I have just read ‘Neurotribes’ and you have totally summed up my feelings. Although it can be quite upsetting to read at times, it shows just how far we’vecome. Long may it continue..

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