Responsibility, Autism and a legacy of failure – The Autistic Advocate

By Kieran Rose, Founder of The Autistic Cooperative

When it comes to Autism, how does responsibility fit in?  Who is responsible, who holds the power and what do they do with it?

Those responsible for the narrative of Autism literally hold the lives of Autistic people in the palms of their hands, yet that responsibility is being abused.

And at what cost?

I find it hard not to spot and project forward the patterns in life – how one path reaches a destination and reveals a myriad of other paths to choose from.

One such pattern has had a profound effect on me, i can see the path I took snaking off behind me and now, knowing what I know, I can see the path extrapolating out in front of me too…

Despite actively Advocating online for years, I only started blogging in October of 2017 and only really joined Twitter properly in January of 2018.

One of the first people I came across was an account called The Life of Reilly.

If you’ve never heard of The Life of Reilly, then boy are you in for a treat.

It’s a blog, first and foremost, written by Christine, the Mother of of an Autistic boy called Reilly.

Christine Stephenson, The Life of Reilly
Reilly Stephenson, Autistic wonder

Christine is one of those parents who I am so utterly thankful for their existence.

Like Walewska Watkins, who wrote a piece for me about her journey to Acceptance in “A parent of Autism“, Christine just gets it.  Whether or not she is Autistic herself is something that me and her have discussed before, but regardless she understands the concepts of Neurodiversity, she understands that Reilly is an incredible human being and not just because he’s her son, but because his brain is actually incredible.  She gets that he is neither wrong nor broken.

Christine started writing a blog a few years back, called unsurprisingly “The Life of Reilly“.

If she’s honest it was probably a bit of a cathartic outburst at first, but over time it’s developed into something else, through joining forces with the wonderful actress and writer Alison Stanley, she and Alison have developed a play and now a short film.

Alison Stanley, Actress, Writer and singer

The play (and the film) are not the usual fare, the focus is on a family with an Autistic child and the family is suffering.

Not unusual you might think.

But this is where it differs – it soon becomes very apparent that the family aren’t suffering because there is an Autistic child, they are suffering from a lack of education, a huge lack of support and a complete lack of acceptance.

They are being failed, not because they have an Autistic child, but because Services are failing them.

I’ve developed a friendship with Christine and I couldn’t have been prouder when she asked me to speak at the Premiere of the Life of Reilly short film.

I struggled with what to say

I’m not much of a public Speaker; Being Selectively Mute is a huge problem for standing in front of hundreds of people and verbalising (You should have heard my wedding speech – My wife read it…) and I was concerned i was going to let Christine down.

I felt like I had a responsibility to her to do, what i knew would be an incredible film, justice.  I felt a responsibility to the Autistic people involved in the play and the film, like the brilliant actor, Scott Ritchie.

Mostly though, I felt like I had a responsibility to Reilly, to make people understand who he is and why he is being failed along with so many Autistic children and adults and their families.

The Q&A after the Premiere with Kieran Rose, Alison Stephenson,
Charlie Price, Autistic actor Scott Ritchie and Kieran Rose

That’s when it struck me:

Responsibility.

The reason I do what I do.  Writing, speaking, supporting parents, supporting other Autistic people, is because I feel responsible.  I am responsible.  I have a voice, I have an ability to convey what is in my head in a way (hopefully), other people can understand and learn from, so I have a responsibility to use it and am accountable to those I use it for.

Then I realised that others are failing in their responsibilities.  Charities, Education, Health, welfare, on and on and on, a litany of services not accepting, not educating properly.

Why?

Because the education they are receiving is wrong, is negative, is driven by ridiculous bias and the amazing ability of nobody to actually listen to what they are being told, by the people whose condition they are describing so badly.

At the bottom of the heap are the ones directly affected, the ones whose lives are dictated by the failure of others to take responsibility: the Autistic children and Adults, the Parents, the late diagnosed and those who remain undiagnosed.

So I spoke about responsibility.

Here it is:

“My name is Kieran.

I am a freelance-Writer, a Mentor, and an Autism Campaigner.

I am a Husband and a Father.

I have a huge range of sensory issues, I am Selectively Mute and I am also Autistic.

Oh and forgive me in advance, because I am not a public speaker.

Tonight, the film we are here to watch is about the realities of having an Autistic person in your life and, it is also, more importantly, about the lack of acceptance and understanding of Autism by society.

Usually the take away from a film, or programme, or book about Autism, is how hard the family has it; how the Autistic person ‘suffers’; how both the child and family are battling against Autism.


What The Life of Reilly tells us is that the battle is NOT against Autism, the battle is actually against services and knowledge.


Local Authority, Health, Education, Justice, Police, Welfare, Employment, Social – the huge collection of services that rule our lives, but who are utterly under-educated, and which don’t appreciate the challenges Autistic people and their families face, due to living in a society not created with Autism in mind.


The film we are about to watch carries many significant messages, but for me, the most important one is one of responsibility.


The responsibility of parents to learn about Autism, in order to best support their children; and the responsibility of Services to learn about Autism, in order to best support Autistic people and their families.


But there is a huge problem.  The information given to parents and services about Autism is largely confused, conflicted, outdated and often dangerously wrong.

This information comes from Autism Professionals


Autism professionals dictate and control the narrative of Autism.  The language they use, is the language they pass on to parents and to every aspect of society.  


The information they pass on is taken as gospel.


The current culture of Autism is that Professionals decide what we need, Professionals train other Professionals, Professionals apply the services and then Professionals pat each other on the back and tell each other what a good job they’ve done.


All of these Professionals are telling everybody different things, each are biased towards the studies of different researchers, each follow different philosophies and each use external observations, based on different models of very narrow and poorly defined Diagnostic criteria, all written by Professionals.

Remember that word I used earlier: responsibility…


How are parents, parents like me and you, supposed to support their children, if the information they are being given is outdated, narrow and generic, or plainly wrong?

How are schools supposed to educate children, if the information they are being given is outdated, narrow and generic, or plainly wrong?


How are Doctors and Nurses supposed to make educated decisions about the care and needs of Autistic people, if the information they are being given is outdated, narrow and generic, or plainly wrong?


Responsibility…


Autism Professionals, who tell us what Autism is and how it should be addressed, hold the lives of every Autistic person in the palm of their hands and yet look what happens…


We have gone from generations of undiagnosed Autistics, who have spent their lives suffering in ignorance; convinced that something was wrong with them; to now generations of diagnosed Autistics, who may as well go undiagnosed because of either the lack of support, or inappropriate therapies offered to them and whose parents are led to believe that there is still something wrong with them.


Responsibility…


When you have Diagnosticians that can’t recognise an Autistic girl, because she doesn’t tick every box on a list, written by non-Autistic, external observers, who are looking for a narrowly defined set of behaviours, that hold a bias towards boys…

Or, with a lazy diagnosis, informs a parent that their child is low-functioning or high-functioning, and sets that child up for a life-time of stigma and limitations because of it.


When you have mental health workers who don’t understand Masking and have never heard of Autistic Burnout; So, they assume depression and incorrectly start prescribing SSRIs to Autistic adults and, more shockingly, Autistic children…


When you have Special Schools and Psychologists, who insist on courses of unproven Behavioural Therapies, designed to change the Autistic behaviours of an Autistic child and normalise them…

When you have CAMHS workers who can say that they don’t think a child should have been diagnosed Autistic, because they show empathy, or some other misinformed myth, based on poor research, which is taken as fact because a ‘famous Autism Professional’ uttered it…


Responsibility…


Studies show that Autistic people die very early. Our average range of death is between 36 and 55…  Our biggest killers, besides epilepsy, are heart attacks and suicide…


These are symptoms of a stressful life.


A life lived in a world unwilling to understand. A world unwilling to change; A world unwilling to truly accommodate. A world unwilling to Accept that WE ARE DIFFERENT but it’s OK that we are;


Because difference is good.


Difference. Drives. Us. Forward.


Difference challenges us all.


Reilly is different.  


My children are different.


I am different.


Don’t fear us because we think differently, or because we flap our hands and rock, because we can’t speak, or speak too much, because you don’t always understand our communication and we don’t always understand yours.  Or because we are happy not looking at you, because our brains are wired differently to yours, because the world overwhelms us and we melt down.


And don’t assume that because of those things, that we don’t have voices and can’t speak for ourselves; That our thoughts and our feelings don’t matter because we are Autistic.


Come and talk to us, listen to us and learn from us.  We’ve got an awful lot to share with you.


Autism is the thread that weaves through our differences.


We are Autistic. We are taking responsibility. Why don’t you too?


Thank you”

Kieran Rose, speaking at the Life of Reilly Premiere, taking responsibility…

You can find a link to the film below.

It is paid for – it’s £1.50 or £2.00 (Or whatever unit of currency your country uses), depending on whether you wish to stream it or download it.

It genuinely is worth it – every penny goes into the pot to pay for the full length feature film, which will include as many Autistic cast and crew members as possible (as does the play and the short).

The film will follow Reilly from a child to a man, and will again highlight how it isn’t Autism that is the problem.  Not to say it isn’t challenging, but a little Acceptance can go a long way.

To watch the Life of Reilly short film, please click on this sentence

As a small disclaimer, some people have questioned a certain scene in the short, you’ll know it when you see it – This has been my stock response:

“Its horrific and shocking isn’t it. That’s the point.

The whole aim of the short is to highlight what *can* happen when faceless services fail to support parents who are already struggling.

In this case, the change in taxi escort has completely disrupted the child’s morning routine. The Mum, already struggling, has to deal not only with the change to the routine, but a judgemental person tapping their watch on the doorstep, and the person on the end of the phone who doesn’t care about the impact they are having.

The child, played by Charlie Price (Who is phenomenal), melts down and the parent gets overwhelmed and their frustration boils over onto their children.

Sadly, its really not that uncommon.

The message here is not that its acceptable at all, it obviously is not. The message here is that services failing families, from not educating them properly all the way to actually making things worse, not better – are the biggest part of the problem.

The system has broken her, like it is breaking Autistic people and parents of Autistic children all over.”

Kieran Rose speaks: A small sample of a very big crowd

Someone on Twitter recently responded to a thread discussing Selective Mutism, which bled over in to SPD and some other areas. A parent had asked a question and, because of the depth and vast knowledge shown in the responses by myself and several others, they said they were overwhelmed by how much we knew and by so much information that they had never been given..

My response was that we have to know this much.

We have to soak up as much information about Autism as we can, we have to work out how different co-occurring conditions are connected and interplay with Autism, in order firstly to process who we are, but also because we have take responsibility for ourselves and make ourselves accountable, simply because nobody else does. We are responsible for disseminating information which is accurate, which comes from a wider knowledge base than the people ‘officially’ disseminating the information…

Autism Professionals claim that they are THE source of information, they claim to know all, but the fact of the matter is that the Autism Professionals, Researchers, Diagnosticians, charities etc don’t have the knowledge, awareness and inside information that we do, despite their claims.

At the end of the day, they go home and we live with their decisions, their ignorance and hubris; and their failures.

Yet it’s them that disseminate the information down the chain to parents and up the chain to policy makers.

The legacy of their responsibility is ‘cures’ that are fake and harm us; Treatments that harm us and force us to Mask harder; A world full of poorly educated, struggling parents, who become blinkered and overwhelmed and resist what we are telling them, because because they can’t handle the disparity with what they are told by Professionals being so different from what we say.  They can’t believe that they are harming their children when we tell them that.  They don’t want to believe us because we don’t have the authority that professionals do, despite them knowing less than us.

Ultimately though, the legacy of these people is a bunch of badly damaged Autistics, who die early.  Who completely misunderstand themselves and generally hate themselves.

When was the last time you heard a researcher apologise because they were wrong and their research sparked yet another myth?

When was the last time you heard an Autism Professional publicly correct a theory that they put out which has been debunked multiple times but services still adhere to, leading to a multitude of mis-diagnosis and has indirectly led to suicides.

Professor Simon Baron-Cohen I’m looking at you here.

I talk about responsibility in my speech.

Autistic people:  Take responsibility for yourselves.

Wake up to the fact that what you know may not be right, be introspective, broaden your knowledge, learn from other Autistic people, especially those who have already done this and then use it to support Parents and each other, use your voice to stand up and be counted in the fight for our rights and lives. The Autistic Advocates you see are often the most vulnerable, the ones attacked and belittled, the ones burning themselves out into oblivion for you and your rights.

Autistic Advocates: Take responsibility by supporting each other

It is so easy to jump on others and tear them down for their mistakes or perceived failures, so be gentle, instead of criticising, offer to help, build each other up, boost each other and above all remember your self-care.  Your responsibility to others is paramount but so is your responsibility to yourself.  You cannot help people or Advocate properly if you do not look after yourself.

Parents: Take true responsibility for your children – learn from the people who were your children.

Listen to us and realise that collectively the community will ALWAYS know far more than a bunch of people making guesses and that it will always be there to help and support you, please stop fighting us.

Services: Take responsibility for YOUR education.

Learn from the people directly affected by your actions, not training by people who are NOT affected by your actions, but know less than those who are. Go to Autistic people, ask them questions, use them as a resource and, like you would with any other professional service… Pay them.

Politicians: Take responsibility for the people you speak for and represent.

Realise that the people you rely on for information to make decisions are not always the best sources.  Autism has become an industry and the people you think are experts often have politically and financially motivated agendas.

Charities: Take responsibility for the people you claim to support and represent.

The information you disseminate and the courses and treatments you signpost to, are often wrong and harmful so research them, parents rely on you for help, they TRUST you.  Use the wealth of knowledge of Autistic people and bring them into your organisations as equals.

Don’t betray that trust.

Autism Professionals: Take responsibility by looking at the effects of your research, your theories and how you put them out there.

Realise that there are grave consequences every time you open your mouth about a subject and disseminate information which you truly, if you admit it, know very little about. You often live in an academic bubble and do not see the effects of your research and how the media and public take them as fact.

Everyone needs to take responsibility for themselves and each other.

Those who do not are the ones causing depression and suicide and, quite frankly, the subjugation of what is an increasingly recognised population.

Autistic people are here to stay.

As I said in my speech:

“We are taking responsibility.  Why don’t you too?”

Kieran Rose, answering questions at The Life of Reilly film Premiere
***Images used and photography by the brilliant Michelle K Williams photography, you can view her beautiful landscapes on her website michellekwilliams.com/***

Source: Responsibility, Autism and a legacy of failure – The Autistic Advocate

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