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?

Are you on Facebook? If so, have you seen The Special Parent’s Handbook Page? It’s full of the best information, advice and support for families of special needs children.

I also have another Facebook Page called Coke Floats & Chemo, to offer support, information, news and hope to anyone coping with cancer

I also have another blog called Coke Floats & Chemo Blog? It started out as a blog about how I was dealing with Cancer, but it’s now more about whatever I want to write about

 

Yvonne NewboldYvonne Newbold – named by HSJ as a Top 50 Inspirational Women in Healthcare 2014 

Winner of Learning Disability Today  Learning Disability Champion 2015

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Author of “The Special Parent’s Handbook” #1 Amazon Best Seller

To buy your copy of “The Special Parent’s Handbook please click on the link to the Amazon page below

 

70 years of Autism, and what’s changed?
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12 thoughts on “70 years of Autism, and what’s changed?

  • April 23, 2016 at 8:01 pm
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    Yvonne, I agree wholeheartedly with your article. As an educator I would love to be able to provide what children with autism need so that they can be fully included in my mainstream school. I have begged, emailed and phoned for support till people are sick of me, paid for training, tried to support staff and parents, and lost much sleep over the issue. There is nothing adequate or suitable to match our needs to do the best by the children in our care. I have been reduced to tears by the frustration and sadness of this. If I feel this way, goodness only knows how parents and children feel. The system is broken I’m afraid.

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    • April 24, 2016 at 4:05 pm
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      Hi Aly, Thank you for leaving such positive feedback about this post, and always lovely to know that there are teachers like you who really care and who want to support all our children. You are right, the system is broken, but it doesn’t have to be. It’s so sad that it’s causing so much frustration and heartache to everyone involved, but a lot of the things that really matter don’t have to cost anything at all, and you have an abundance of those really important qualities already. You care, you want to make a difference, and you want to understand. You are way more than halfway there already. On behalf of parents everywhere, thank you. Yvonne xxx

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        • April 24, 2016 at 4:10 pm
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          You’re welcome, Aly, it’s a pleasure xxx

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  • April 24, 2016 at 8:17 pm
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    This post brought tears to my eyes. So much has moved on, but yes, still so much to do. Together we can do it though! Thank you for helping spread the word, and the understanding that is necessary xx

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    • April 24, 2016 at 9:32 pm
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      Oh Steph, sorry it made you cry! I really do believe we can do it, and with the way that the internet is helping us speak out and together – families are gaining confidence and a collective voice. It’s not going to be overnight though, and one day soon I’ll write about how our experiences with Toby over the past couple of years have shown how easy it can be to get things both horribly wrong and fantastically right. Getting it right doesn’t necessarily even have to cost any money – a lot of it is down to individual’s attitudes, integrity, compassion and willingness to be open-minded and to listen. We have to help to make it happen – and thank you too for your commitment in keeping the dialogue going. Take care Yvonne xxx

      Reply
  • April 24, 2016 at 9:26 pm
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    Very good points you’ve raised, Yvonne.

    I’ve done a lot of reading on the controversial issue of GMO’s (foreign DNA that biotech companies such as Monsanto, insert into the genes of many of our foods). I bought a copy of the fascinating documentary Genetic Roulette – The Gamble of Our Lives by Jeffrey M. Smith.

    In it, paediatricians and health specialists from across North America are interviewed. Many recounted how they’d treated numerous children who were living with severe cases of ADD, ADHD, Autism and gut issues.

    When they analysed the foods these children were consuming on a daily basis, they determined that many of the foods contained GMO ingredients (which the parents didn’t realise, because the foods were not labelled as containing GMO’s).

    When they worked with the parents to remove all the GMO foods from the children’s diets, the results were amazing. In all cases, there was a very speedy and profound reduction of all the behavioural and other symptoms the children had previously displayed.

    The children became calm, much more focused and communicative and gut issues vanished. After some weeks, one parent reintroduced some of the GMO based foods back into her child’s diet, only to witness all the distressing symptoms return.

    I would highly recommend this documentary to all parents, paediatricians and other health care specialists, and child educators.

    The DVD is available on line and through The Institute For Responsible Technology.

    I hope this information will be helpful.

    Best wishes,
    Sharon Kite, Ottawa, ON.

    Reply
  • April 27, 2016 at 9:10 pm
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    I’ve also read a lot about a likely connection between childhood vaccinations and children’s many health reactions to them…some immediate, including autism and other health conditions. It’s well worth exploring, since the allopathic, drug-based, big profiteering pharmaceutical industry won’t admit it to parents.
    Sharon Kite

    Reply
  • August 22, 2016 at 11:14 am
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    I was very moved by your post. Of my four children, two have high functioning autism and one has more moderate autism with an intellectual disability. I try to be optimistic – I think my two Aspies will be able to make their way, albeit with more challenges than their brother, but I do worry for my daughter. Having said that, we have come a long way – even in the last ten years, I think. Autism is much more widely recognised and understood, and the language shift to “neurodiversity” is helping as well, I think. I have to stay positive. As a parent, I don’t think I have any other option. While I have my down moments, that’s ultimately not going to help my kids. Special needs kids, especially those with ID, need advocates who can be strong, positive and persistent. Thank you for the reminder of what needs to be done.

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    • August 23, 2016 at 11:49 pm
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      Hi Jennie, thank you for reading the post and for taking the time to leave such kind and very honest feedback. You are so right, things are changing and moving in the right direction for our children, and society is becoming slowly more accepting, but we’ve still got a very long way to go. I so understand your fears for your daughter’s future. I was exactly the same over my son, Toby, terrified of the prospect of him living away from home and not being valued, cared for and properly understood. Then shortly after his 18th birthday the worst thing possible happened – my health declined significantly to the point whereby I can no longer look after him at home. Instead he lives in a residential care home now, less than a mile from our house, and we see him two or three times a week. The care home staff have surpassed my wildest dreams in the way they care for him with such kindness, everything is about his quality of life and making sure he is happy, having wonderful experiences and lots of fun. Looking back I can’t believe the state I used to get myself into worrying about the future, when its’ actually taken care of itself. There are some fabulous residential facilities with some amazing staff, and when the time comes you’ll find the best place possible for your daughter. And no, I would never have believed it either, but he is so settled, relaxed and happy, and they are even taking him on a holiday of a lifetime in early September! It sounds like you have your work cut out for you, but it also sounds as if you’re managing incredibly well and staying upbeat and positive. Things will work out for your children, probably far better than you could possibly imagine right now. Take care, Yvonne xx

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      • August 26, 2016 at 1:28 pm
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        Wow, Yvonne. Thank you for your encouraging and detailed reply. It certainly helps to hear these positive stories. I appreciate you sharing some more of yours with me. I’m so glad that things are working out for your son. Yes, I think things often work out better than we anticipate! Best wishes, Jennie

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        • August 31, 2016 at 2:45 pm
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          Thank you Jennie, and you’re welcome. I hope things work out as well for you and your family. Take care, Yvonne

          Reply

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