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70 years of Autism, and what’s changed?

by Jenny Crane

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Guest blog kindly provided by Yvonne Newbold; a writer, speaker and trainer who is also the mother to three children, including Toby who is multiply disabled with profound learning disabilities.  Get in touch with Yvonne @YvonneNewbold, or see her website here.

 

 

When my mother left Dublin in 1946, just before her 18th birthday, to come to England to start her nursing training, the word “Autism” had only just been invented. Last week, 70 years later, I was delighted and honoured to be returning to Dublin to speak at the AsIAm National Autism Conference. How the world has changed in the intervening years – my mother would be thrilled to see how Dublin is now perceived – vibrant, cultured, creative, fashionable and edgy. In those days, as a teenager, she had to be home before dark with no excuses. In Dublin back then, everybody’s Mam would tell your Mam what you’d been up to, and woe-betide her if she was ever caught talking to boys.

Dublin Castle
Dublin Castle

My childhood was rich with tales of her Dublin youth, as well as stories of her nursing years, when she looked after children at a long-stay Surrey hospital miles away from their Inner London homes. The NHS was being set up, antibiotics were brand new and rarely used, and children died from conditions we now understand and can manage and treat with excellent quality of life outcomes. Back then, there were long-stay wards for children with both Coeliac Disease and TB, both terminal conditions for many children in those days. The children would die slow and prolonged deaths, with absolutely no hope whatsoever.  How much progress we have made in medicine too.

She also nursed children with autism, although of course they weren’t called that then. They were in the section of the hospital for mental retardation, the lunatic children, the ones, again, with no hope way back then.  So how much progress have we made in with Autism in the past 70 years?

Yvonne Newbold AsIAm Autism Conference

In some ways, we have come a long way, but in other ways we have stood still for far too long. At least we all know the word “Autism” and children with the condition are more easily identified and recognised. We have a better understanding of how therapeutic intervention can help children with Autism to achieve a much better quality of life too. We also understand much more about how ASD children relate to the world differently, and therefore learn in different ways. Our knowledge of autism educational strategies is increasing all the time, and it should be a really exciting time in the history of autism – it is now within our grasp to offer every child the therapeutic and educational experiences that will offer each of them the very best chance to reach their own potential.

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However, it’s just not happening. Not here in the UK, not in Dublin or anywhere else in Ireland, nor anywhere else in the World as far as I can see. We have the tools, we have the wisdom, we have the know-how, we have the research and we have the experience, yet our children are being denied access to their best chances of a meaningful future.

Yes, there are pockets of excellence, yes there are some children who are making great progress, but it’s not universal in the same way that it is for children diagnosed with other conditions. It is simply wonderful, and beyond my Mother’s wildest dreams as a young nurse, that every single child with a diagnosis of TB or Coeliac Disease will get the very best, up-to-date, evidence-based treatments and therapies on offer. It is fantastic that antibiotics have prevented deaths in hundreds of thousands of young children over the past seven decades. Infant mortality rates have also thankfully plummeted, and life expectancy is better than ever.

Unless you’re autistic.

I don’t have the Irish statistics, but in England, if you have autism, you are likely to die sixteen years earlier than the general population. Around 70% of people with autism also have a learning disability – and the England statistics have found that 3 people with a learning disability die a completely preventable death in hospital every single day.

Children with autism at school don’t always get the appropriate help, support and understanding. More and more children with Autism are being shoe-horned into ordinary mainstream schools where the teaching staff have no specialist training in the symptoms of autism and how to adapt the curriculum to appropriately meet their needs. Some schools are excellent, some teachers are fantastic, and some children are doing incredibly well. But many are not, and it’s just not good enough.

More and more parents are watching helpless as their children’s emotional well-being deteriorates and their self-esteem hits rock-bottom. Bullying is commonplace, self-harm and suicide attempts among ASD schoolchildren are on the rise.

Officially, national policy no longer locks up people with autism in long-stay institutions anymore. Yet hundreds of families are effectively imprisoned behind the closed doors of their own homes because of Government Policy. All because families are being denied the essential appropriate support, intervention and training in how to help their ASD children to develop and thrive in a non-autistic world. Their children exist in a state of heart-breaking distress with all the symptoms of the challenging behaviour that distress causes.

It would be unthinkable for any modern democratically elected Government to withhold treatment or therapies from a child with a physical long-term condition, so why are children with neurological differences not given equal access to the interventions that might help as a matter of course?

They’ll tell you it’s too expensive. That doesn’t wash with me. It will cost far more over the course of these children’s lifetimes to put right the wrongs that are being done in childhood.

Intervening now with the skills that an Occupational Therapist or a Speech and Language Therapist can help a child to acquire can make the difference between an adult life of independence or one spent in a care home with round the clock support workers.

Intervening now with behavioural support can make the difference between a child being able to look forward to a productive working life, or an existence locked away in their bedroom, frightened of the outside world. Intervening now with meaningful educational strategies can make the difference between a teenager who is attempting suicide because they feel so worthless, or one who is preparing to go to university.

Instead, society abdicates its responsibility, and their families carry the can.

This isn’t just the Government’s problem. It’s not solely the responsibility of the relevant Health or Education departments either. This is everyone’s responsibility. Why? Because over the past 70 years we still haven’t come far enough in changing attitudes, cultural norms, assumptions and prejudice. The bottom line is that people with autism, learning disabilities, neurological differences or any other form of disability are regarded as second class citizens by the general population. We have awareness campaigns, but they aren’t enough. We have legislative changes, but nothing changes quickly enough.

If it were people with green eyes who were dying needlessly at the rate of three a day in publicly funded hospitals, there would be outrage. If children who had brown hair were expected to attend schools where the teachers didn’t understand how to teach them, and they were made to feel so hopeless that they spent their teenage years self-harming, something urgent would be done to make things better.

People with autism are not valued, and their lives don’t matter. That is the message that is coming loud and clear from society, and until that changes, nothing else will. It starts with you and it starts with me. We can sit and wait until “somebody does something” but we are that somebody. If you don’t know about autism, find out more. There is plenty of great information online and plenty of great videos on YouTube.

As Dan Wilkins said, “Any community that excludes even one of its members is no community at all”.

My mother would have had a lot to say too. She cared deeply about people, she hated injustice or any form of prejudice, and she adored those long ago children she once cared for. Yes, even the ones who couldn’t speak, who sat and rocked all day, and who lashed out at anyone who came close. She told me so much about those strange and unhappy children, and she was puzzled and perplexed by what she might have been able to do to connect with them in some way. She never knew what it was called, but she was an Autism Advocate well before her time.

70 years of autism Mum

Mum passed away in 1979, and going back to Dublin after so long was emotional, poignant and moving, particularly now that I, too, am terminally ill. She would be bursting with pride that I spoke at Dublin Castle.

We had a wonderful day at the Conference, a day of insightful conversations with like-minded people who also want everyone with Autism to be able to live full and meaningful, productive lives. How do we harness that message and use our collective energies to make the difference that has to happen?

Asiam National Autism Conference Programme

One of the biggest barriers to equality that people with autism face is other people’s lack of knowledge and understanding. When people don’t know or understand why someone may be behaving differently, they can become fearful or judgemental, and that makes gaining acceptance almost impossible. That’s why it’s so important to keep the conversations going that we started in Dublin Castle last week, it’s conversations like this that can help to shift public perceptions and attitudes.

We can continue these conversations everywhere – in our communities, our schools, our hospitals, our workplaces and with family and friends, and have them online too. What can you tell someone this week that might help to make a difference to how they think about autism? Sharing this post or others like it might be a good way to start. Change can start with just one person doing one small gesture or expressing one idea. It can start with one act of kindness towards a person with autism and their family. It has to start somewhere, and from someone, you, me, all of us together. We can do this. Can you help?

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