Autism ADHD and so much more.

Feeling The World Differently
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School Neurodiversity Presentation for Parents.

Why are we here? Why are we talking about this?

Well, it is amazing and wonderful that your school and your marvellous teachers have decided to do this. It means so much to me that people are starting to want to know more. It will mean even more to your children when we create a better, more inclusive, equal society, that welcomes and values its own diversity.

I love the reference from The Greatest Showman that your teacher uses in her teaching material. This is me – this is who I want to be.

And so, I’d like to talk to you today about me, my neurodivergent way of seeing and feeling and processing the world differently, and my hopes for the future. I know that everyone’s experience of their own life is different, so this is about what I know about me, but in reading, and research, and presenting, and coaching, I do find that there are lots of overlaps of experiences and of ways of feeling the world differently.

Your school says that it sets out to grow together to find our voices and create a better world where everyone flourishes. It makes me quite tearful to read that. It is exactly what is needed and is why I speak openly and honestly about myself. So, thank you so much for inviting me and thank you for caring about the future that we create for our young people.

Early years studies have long established that there is a direct link between what children hear, see, and feel as they grow up and their mental health in later years. And that applies to all children irrespective of whether they are neurodivergent, or more of the neurotypical variety. The more common brain type is often just called NT (neurotypical) or the majority neurotype. Common meaning that it occurs more frequently, not that it didn’t go to Eton. Some specialists don’t like that the word typical sounds similar to normal, but lots of others think it’s important to make a distinction. Probably a discussion for another day.

Autistic, neurodivergent brains, have been changing and shaping the world for years and I know that your teacher suggests the book Neurotribes which examines this, and, when you know what you are looking for, it is easy to see that autistic and neurodivergent brains are busy making life better and different all around us. If more felt comfortable to disclose, or even able to recognise their differences, then the way we understand all of this could be totally different.

Why might it be that society doesn’t seem to understand enough about autism and how can we change that?

(Please interchange autism for neurodivergent – I think that we all belong under the same big umbrella, and I do wonder if often people associate with one label that feels more ‘acceptable’ or understood – I am not medically trained, so just my own theory, but happy to chat later.)

So many groups of people who think or feel or behave differently are readily accepted, understood, and even protected, but often this doesn’t seem to be the same for people who are given the labels attached to brains that divert from the majority neurotype. There are so many myths and misconceptions leading to a myriad of misunderstandings, that the truth about what autism really is, and really isn’t, is often hidden behind the stereotypes and stigma. The same is true for ADHD, ADD, OCD and all of the different neurological ways of processing.

In the recent documentary about autistic minds, Dr Chris Packham created a digital image of the way that his brain sees and seeks out knowledge. I was excited because it was how I see things, but then he didn’t explain. Dr Camilla Pang, in her book Explaining Humans describes a similar thing but refers to what she calls tree thinking: the way that her brain and her thoughts flow and grow.

My Sherlock Holmes thing.

I call this my Sherlock Holmes thing – but without the ability to solve crimes. I see and hear and feel and process everything all at once which often causes physical and mental meltdowns. I know this now, but I have spent over fifty years thinking that I am just awkward or ungrateful or too fussy. There have been occasions where I have presumed that I felt uncomfortable, or unable to cope, because the people didn’t like me, or because of something that I had said or done. And whilst that might have been true, I would often cause an argument or become hysterical so that I could find a reason to leave. If I had been able to identify what was really happening to me, and if I had been able to explain, then maybe I could have navigated life in a way that wouldn’t have left me feeling confused, rejected, and feeling unable to fit in. If we all talk more about how we feel and hear and see the world, then my hope is that the world will become a place that is more autism friendly than we often feel it is right now.

My hope is that we start to talk about our autism, or neurodivergent ways of feeling and seeing the world, in ways that others can recognise and understand. As part of my Post Graduate Course in Autism Studies, I have been creating material for autism recognition and identification without lists of deficits or impairments. Whilst the language is negative and focused on disorder and disability, it is not surprising that autism is misunderstood.
Difference, disorder, or disability?

Because autism is often discussed and diagnosed by deficits, and with lists of things that we apparently can’t do, the focus of articles is often on this alone, which inevitably just reinforces the belief that this is overwhelmingly a disability. It would be totally disingenuous of me to pretend that living as me has been easy, and I have certainly felt disordered and my way of seeing and hearing and feeling and processing the world can certainly feel like a disability, but if society understood the true nature of autism, and was just a little more autism friendly, then maybe my strengths would shine through, and we could discuss some of the positives of being me instead.

I have been wondering if I were to ask all of you what your preconceptions of autism are, what I would hear? And, if this helps, I would like to say that until 4 years’ ago I thought that there was Rainman at one end and Forest Gump at the other. I was totally ignorant and totally wrong, and this caused me to completely misunderstand myself and others. But this is understandable and is the reason that we are here today. I hope that we can start to change perceptions and to challenge the myths, the misinformation, and the misconceptions. There has been virtually no field of reference in the mainstream and no information at all. There have been hardly any voices out there trying to explain and change. That’s why I am doing this. I want to make sure that not just your young people, but all people, know about all of our differences, and make sure that no one is left behind or excluded anymore.

An anthropologist on Earth.

So, hello, I am Tracy. I am – I think -a human like you. And I was once a child still filled with awe and wonder. My hope is that through things like this we can make sure that your children and your students get to keep that feeling. Hans Rosling, who I love because he is all about the facts, was a Swedish Professor of International Health and he campaigned to change the way we see the world. Lots that we think is often wrong or based on assumptions or misconceptions. If you haven’t come across him – there are fabulous short videos on YouTube – he shows us all how our own bias might be worse than we think.

But to admit being wrong and to embrace new ideas is hard and often uncomfortable, which seems to be why so many people don’t do it. Hans says that his aim in his book ‘Factfullness’ is that “I want people, when they realise that they have been wrong about the world, to feel not embarrassment, but that childlike sense of wonder, inspiration, and curiosity.
I am always thinking, and I love the wonder of the world, of me and of you. It is all amazing, isn’t it? My brain is wired wonderfully so that it is perpetually looking and learning. What’s next? What’s new today? Why is that like that? Why did that happen? Tell me about yourself. Tell me about the mountains and the stars. Tell me about Love Island – no not that one! To me and my neurodivergent brain, everything I see, and hear, and feel, is new and special and worthy of awe and wonder.

Why don’t I fit in? What did I do wrong? Why didn’t they like me? What did I say? Why can’t I say that?

These words have been my constant companions for over fifty years. For over half a century I have been wandering around in a fog of confusion, and often chaos. I kept going always expecting to emerge into a bright new day. Now I know who I am and why; after years of misunderstanding and misdiagnosis, I finally know that I am autistic and in fact, I didn’t do anything wrong. I feel and see and hear the world differently and it is time that the world tried to understand that.

Should have said – please expect digression – with a brain like mine things are never going to run in straight lines. And see what I did there, I didn’t apologise for that. One of the early books about growing up with an autistic brain was ‘Pretending to be Normal’ by Liane Holliday Willey. Like so many of the other writers, there is so much that jumps out as me, me and me. Although labels can be problematic – another discussion for another day – they certainly have helped me to know that my difference, which seemed to cause so much chaos and confusion, wasn’t because I am faulty or wrong or bad, but that I am actually amazingly autistic.

Lianne says that “I lament the years spent worrying about what others think to the point I forgot I had a right to my own opinion. I’m sad I poured apologies about my ‘odd’ behaviours over people who frankly did nothing to deserve my apologies, people who I’ve come to believe actually owe me an apology for the way they treated me.” Well said Lianne.

Recently I was leaving to catch a flight and my husband asked if I had clothes and toiletries in my backpack – I love a backpack. Bemused I opened said bag and showed him the mandatory woolly hat just in case, 2 notepads and a variety of coloured pens – well you never know – and 4 books, with Pretending to be Normal on the top. I did understand the humour and the irony when he said – really??

Living with an autistic brain.

I like your world and spend vast amounts of time learning about it. I would love to tell you some things about mine. I am autistic. I have been masquerading as a neurotypical for far too long. Quite frankly, I think that I am starting to like my way better. For me. Your way is fab for you. That’s the point, isn’t it? We shouldn’t be trying to fit everyone onto the same page. Let’s all have our own pages, and at the same time, let’s read and understand the words on the other pages.

Should have said that I see situations in metaphors or stories – but none of us know how anyone else thinks do we – the mistake is to presume that we do. And the current world situation does prove how careless and dangerous that is.

To quote Witney Houston – I believe the children are our future. We are all responsible for what happens to them. Of course, the big issues are important in the world, but running alongside those are individual lives. The more we can talk to each other with open enquiring minds, the more we can learn, and then the more we can change.

Dr Luke Beardon says, and I agree, that “autism is not a tragedy. Yes, autism brings its own set of problems, issues, challenges, but many of those are situated outside of the child. Being autistic need not be a problem; being autistic in a society that doesn’t understand however, that most certainly can be a problem.”

In his book ‘Avoiding Anxiety in Autistic Children’ Dr Beardon really encapsulates what I think, and what I hope we are all here for, and what we can work together to achieve. His perspective is “that there are so many problems that society forces onto autistic children and this in turn, leads to distress.” He goes on to say that by recognising where we are going wrong, at least we may be able to do something about it.

My own ignorance caused me to make bad decisions for myself and others. Had I known what I know now, I could have done so many things differently. Not a sob story – not my thing, but you don’t need to be 50 looking back because you can start today.

And let’s start with this –

I am not deficient, even though the diagnostics suggests that I am.

I decided to take offence at the words used for diagnosis. (I am written a positive version). But if the specialists are describing autism negatively, then this will naturally set the tone for what everyone else thinks.

All of the words are subjective and pejorative. They all imply deficits and criticisms. ‘Impairment, inappropriate, narrow, exclusion, indifference, compulsive, superficial, odd, limited, peculiar’ and so on. Who decided this? By whose rules is this written? And, how on earth is this meant to help me feel better?

Young people with brains like me have superpowers of their own that complement the rest of you. We need to highlight them, nurture them, and embrace them. Society needs these people with these skills and the children need to know that. Many of the issues now associated with autism, certainly in brains like mine, come from the anxiety and eventual trauma created by society. Professor Luke Beardon thinks that most anxiety could be alleviated if society didn’t force its preconceptions and misconceptions on children like the one that I was. Things are changing. But not enough and not quickly enough for your children and your students. We need to speed it up. We need to step out of our comfort zones and learn about those around us, so that we can all live together and make a far better tomorrow.

I know I said that it would be interesting to know any preconceptions people have. But I should also have said that one of the amazing skills and special powers of my autistic brain, is that I ask to learn. That’s it. No judgement, no underlying meaning, no need to be offended. That seems to be more the domain of the NT’s and maybe you can help me understand that.

Why do you and your children matter?

Well, the fact that you have chosen a school that cares enough to run things like this is amazing. And just by turning up you have changed so much already. I feel that there are people out there willing to listen and learn and to embrace all of our wonderful differences. After nearly 54 years imagine how that feels for me. I might cry, but I do thank you. But then far, far better, imagine what a difference you are going to make to your children, to other children and to the society of the future that you are creating. Now that really will make me cry.

The role of a parent or carer is really the most important job in the world and those who have not received positive care can struggle for ever. This is so much harder when we don’t realise the needs of those we are caring for. I hold my hands up to this for both me and my family. What I thought was best was actually not at all. But I, like so many, had no framework, no benchmark. With people like you and your school changing this, we can all look forward to a brighter, more inclusive, more understood and accepting future.

My passion is that we reframe and rewrite everything that we think we understand about neurodiversity and neurodivergent ways of feeling the world. Actually, the worst thing of all for me is not someone not understanding but that so many presume that they do. I have been told, of course, that I don’t look autistic, that I don’t have enough symptoms to be autistic and that I need not worry because no-one would be able to tell.

We are all different really, aren’t we?

It is well known, well documented, researched and studied, that many, most or sadly all children with Neuro diverse brains experience some kind of bullying, ridicule, and rejection. With more information and awareness, we can change this. It’s ok and probably very cool and interesting to be different. Like a sweet shop – all lemon sherbets and I’d get bored of going in there!

Dr Luke Beardon, the lecturer in autism studies explains that ‘intelligence has nothing to do with autism. One can be autistic and incredibly intelligent, and one can be autistic with a profound learning disability – and one can be autistic and sit anywhere in between those two states. So many people assume that being autistic means either one has some kind of savant-type skill, or one has intellectual disability”.

Far too many autistic people struggle not because of autism, but because of a society that doesn’t understand. Dr Chris Cantopher tells us that stress is caused when people are forced to live in ways unnatural to their sense of self or choice.

Tony Attwood’s YouTube video proposes the radical idea that autism is the next stage of human evolution which might sound fanciful but in a time of cancellation and non-platforming, a time of division and polarised views, might it not be wise to listen to people who tend to be oblivious to peer pressure and seek out knowledge, the truth and implement solutions planned in exquisite detail? A collaborative study from Titu University (2018) found a number of autism specialists who believe that ‘autism could represent the next stage of human evolution’ and that the ‘exceptional skills’ could play a vital role when incorporated into society.

It is so fabulous that you all came today, and it would be amazing if we could all change the way that we see each other starting now. Many or sadly most of the adults like me who did not benefit from your support develop Complex Post Traumatic Stress Disorder – different to PTSD – thought that was a war thing everyone says.

So, to conclude I’d like to quote Theodore Rubin, an American psychiatrist. “We are all of us exceedingly complex creatures and do ourselves a service in regarding ourselves as complex. Otherwise, we live in a dream world of non-existent, simplistic black and white notions which simply do not apply to life.”