Autism : A Man’s Man

Yesterday, I heard someone refer to Ian as ‘a real man’s man’.

I freely admit, my first thoughts were “What? My profoundly autistic son? How is that even possible?”

So, as always when I’m presented with a minor mental challenge, I gnawed on it, examined it from many angles, spent a sleepless night considering it, and did a little bit of research on it.

What exactly is a ‘man’s man’?

Perhaps I should start with my own thoughts on the matter …

To me, a man’s man is someone who is confident within himself, of himself and of his place in society. A man who is polite but strong-minded. A man who can express his thoughts clearly, and is not afraid of his emotions. A man equally comfortable in the company of men and women. Like that, sort of.

Does any of this apply to Ian?

Ummmm, no.

Okay, I have to look further afield …

I’m not sure that helps us much.

No, that definitely doesn’t fit.

I’m beginning to understand what was meant.

Up til now, Ian has had almost exclusively female tutors and support staff. I had never given it a second thought.

But

Ian likes being outdoors.

Ian likes engaging in outdoor pursuits, in the company of his two (male) support staff.

Ian is responding well to their calm masculine guidance.

Ian is communicating better, more clearly and more frequently in an all-male environment.

Thus : Ian is a ‘man’s man’.

Okay.

I think I get it now. 😊

And here’s another thing. Because of COVID-19 Ian has been in a much smaller group. Only him and one other ‘service user’, and their two carers.

A smaller group means less over-stimulation – remember, each service user has their own dedicated adult in attendance, so whatever number of people were there to be cared for, double it.

It also means less imitation of iffy behaviours.

That’s the thing, isn’t it? The books might tell you ‘autistic children don’t imitate’ –

“Often children with autism spectrum disorder (ASD) show deficit in imitation. They often show little interest in the behaviors of others around them and rarely try to imitate them.” (https://luxai.com/how-to-teach-imitation-to-children-with-autism/)

But they do.

100%.

Reducing the size of the group and thereby limiting over-stimulation, and giving Ian male support staff for the first time in his 25 years, has shown a marked improvement in his interactions, his communication, and his willingness to cooperate.

And I, for one, couldn’t be happier.

👍🏻😊👍🏻

Autism : What’s in a name?

All his life, Ian has called us “Mummy” and “Daddy”.

He never wavered. He never seemed to wonder why other people called us something else. Even when I tried to tell him, he wouldn’t be swayed.

We were mummy and daddy, and that was that.

So imagine my surprise at bath time last night, when Ian quietly, almost experimentally, asked me “What’s your name?”

I smiled at him. “Mummy,” I said.

Still softly, but quite determinedly, Ian corrected me. “Fiona.”

I blinked in surprise. “Yes, of course. My name is Fiona.”

“Neil,” said Ian, obviously following his train of thought.

“Yes, that’s right. Daddy’s name is Neil.”

Had he been taught this at his day placement? I checked today. No, he hadn’t, although they have observed that Ian is using language more freely and communicating more directly with the staff there, almost day by day.

This is very exciting. The right people in the right environment, connecting with Ian through the right activities = spontaneous greater language usage.

And after all these years, Ian has finally made the connection.

That I call ‘daddy’ Neil, and he calls me Fiona.

Twenty-five years old, and my son finally knows my name. I wish I could adequately express how big this feels. ‘Cosmic’ doesn’t quite do it justice.

Not because he knows it, but that he made the connection by himself.

He worked it out alone, and then fact-checked by asking me my name, and corrected me when I gave him the wrong answer.

That’s huge, and it’s going to take me a while to stop smiling.

I’ll be back in the New Year.

Season’s Greetings, everyone. Stay safe, stay well, stay happy.

Much love ❤️

Autism : The Power of Waiting

It has been my experience in life that people aren’t always great at waiting for other people to speak.

In fact, they may even talk over someone, without even pausing to listen to what another may say. And that’s fine if you’re neuro-typical and with a friend, and can say with good humour “Hey! I’m talking!”

But what does this mean for the child with special needs?

On more than one occasion, I have heard my child greeted like this –

“GoodmorningIanHow’reyoudoing?Yougood?Excellent!Let’sgo.”

One long string of words. A continuous blur of sound – that’s how the autistic child hears it. Nonsense, which requires neither acknowledgment nor response.

By people who work with autistic people!

And my response to it is this:

I didn’t spend hundreds of hours helping my son to speak, for you to ignore the possibility of him speaking.

😡😡😡

We know that children with autism have processing issues. And if we know this, surely we should modify our behaviour to take it into account? It seems fundamental, doesn’t it? But you’d be amazed how rarely it is done.

Let’s break it down :

The autistic mind needs time to –

1. Hear what you say

2. Process what you say

3. Search for the correct response

4. Find the correct response

5. And breathe in, prior to speaking

Let’s say we generously give him a clear second for each of those things, what does that look like?

I say “Good morning, Ian” and silently count off the seconds on my fingers.

Ian takes a breath and answers “Good morning, Mummy.”

Of course, thanks to our many hours together in the therapy room, Ian is used to being asked questions, and knows there is an expectation of a response from us, so there is no pause. We don’t need to count off the seconds, mentally or otherwise, because – if he knows the answer – he answers straight away.

Five seconds out of your day.

BUT that’s five seconds for each time, not just for a response to ‘Good morning’. Every time you look for an answer. ‘Would you like some juice?’ ‘Have you finished?’ ‘Look at the picture – What is the boy doing?’

Whatever the question, the waiting is the same.

Over the span of a day, it may add up to a few extra minutes. But that’s a few minutes of useful work. A few minutes of time well spent.

A few minutes in which you have shown respect for an autistic person’s need to process.

Shown an understanding for the very nature of autism.

I say five seconds by way of example. It might be less than that. It might be a lot more. Twenty seconds. Thirty. I don’t count. ‘Five seconds’ is just to give you a handle on it, a way in. The time will be different for every person.

Of course, the way you wait is hugely important.

It’s about finding that place in which nothing else matters but that moment. A space in which ‘time’ does not exist. Where there is no agenda, no what comes next?

Where there is no ego. No impatience.

There is only waiting.

If you can find that place, that is where the magic happens. That is where you connect with the working mind. *

There’s an obvious question here, of course:

What if I wait, and nothing happens?

Well, you have several options –

~ you can repeat yourself and wait again, and see

~ you can repeat yourself, and model the answer (“Good morning, Ian … Good morning, Mummy”) and pray for some echolalia.

~ or you can smile and move on, sure in the knowledge that the autistic person has noticed. Because they notice everything. And if they notice that you waited and gave them time, they may wonder what you wanted. Better yet, the next time you wait, they may fill the void with something of their own.

And how exciting would that be?

* See previous blog Autism : The Jam Donut Theory

Autism : changing the pattern

Poor Bill …

Perhaps I should expand a little on the story I told in my last post – Autism : The Jam Donut Theory.

I commented that by changing the ‘format’, the pattern of behaviour, something magical had appeared. But there’s more to it than that. Of course there is. There always is.

We occasionally find with Ian that he will become fixated on a tiny section of one of his movies, and say something – sometimes just one word – over and over. It can actually become a bit tiresome …

But it is crucial to realise that what he really wants is an answer. Just as Mary desperately wanted someone to say something other than their name when she asked her question to everyone, again and again.

Not just any answer, of course. The right answer, given in the right way …

I’ll give you an example.

Recently, Ian was stuck on the words “Poor Bill”. He said it a hundred times – he was even becoming quite sad, almost tearful.

This happens sometimes, and it’s distressing for all of us. We tried repeating the words, but that didn’t seem to be what Ian wanted.

The next time I heard Ian say it – when he was sitting in his bath – I took a flyer. I inhaled, in stages, as if I were about to sneeze –

“uh…uh…uh…”

I had Ian’s complete and riveted attention.

“Aatchooooooo!”

I fake-sneezed loudly, followed by an explosive sound – “ptshhhhhhh” – and a rising whistle as I looked upwards.

“Well, there goes Bill!” I said.

And then I copied the voice of Alice (from Disney’s ‘Alice in Wonderland’), and said quietly “Poor Bill…”

Ian was delighted, and smiled from ear to ear.

Of course, Ian knows every single one of his Disney movies by heart, word for word, from beginning to end. By some form of osmosis, Neil and I do as well. And in Ian’s life, that is essential. Because it means we can step in and alter the pattern, answer the question, or complete the scene, and thus alleviate the stress caused by rigid patterns of behaviour – or the distress caused by a scene that won’t leave his brain.

😊🤯🥰😉

I found the relevant section from that film on YouTube. Have a look. It’s fun –

https://www.youtube.com/watch?v=axgCYwOzHaA

Autism : The Jam Donut Theory

It’s probably important that I share this again ….

I spent many long nights while I was home-schooling Ian, trying to come up with a way of explaining how I understood autism.

As a visual thinker, of course I came up with a visual way of answering my own question – I called it “The Jam Donut Theory”, and I have tried to create pictures (below) which will explain it to you in the same way I sketch it on a whiteboard and explain it to college students. (It really needs scribbling, but I’ve done my best 😉)

Here, the Jam Donut, blue dough, orange jam :

With the right kind of work, these ‘points of accessibility’ can become permanent channels, making it much easier to engage with the working mind within, potentially for the rest of that person’s life.

However …..

I always hesitate to include that last image, because it saddens me. That is a ‘worst case scenario’, and you can imagine the frustrations which might result.

******

Here, I would like to tell you a story …

Many years ago, when my son Ian was first in adult services, the center held a party for several different special needs groups.  There were many kinds of disability there, not just autism, and it was noisy and wild and wonderful.

At this party, there was one young woman – let’s call her Mary – who’s ‘thing’ it was to go around the room and shake hands with all the adults present, and ask them “What’s your name?”  

She came up to me and shook my hand. I remember it clearly. Her hands were small and soft and delicate, but she shook my hand firmly and asked her question: “What’s your name?”

I answered clearly so she could catch it, and then she went on her way, around the room again, asking her question as she went, each person saying their name exactly as they had before.

She came back to me.  “What’s your name?” she asked me.

I looked her square in the eye and with a smile on my face, I said “You know my name.  I told you.  Can you remember?”

Mary went very still, and I could see the cogs turning as she tried to remember. Many long seconds went by.

I didn’t move. I didn’t prompt. I stood quietly, and waited.

Suddenly her face cleared. “Fiona,” she said softly. “Your name’s Fiona.”

“Yes!” I grinned at her.  “You do remember.  Well done!”

After that, Mary wouldn’t leave my side.  I was her new BFF, and she clung onto me as if her life depended on it.  

The staff from the center were staring at us, and Mary’s mother seemed to become rather embarrassed by her daughter’s unusual behaviour, but I was in the zone then.  We – Mary and I – were sharing something special, and I wasn’t in a hurry for it to end.

But she was maneuvered away from me, and shortly after that I had to leave.  

It was only on the journey home I realized that perhaps for the first time in her life, someone had discounted the knowledge of all the things Mary couldn’t do, and had credited her with a working mind.

And her clinging to me like a limpet was her way of saying ‘thank you’.

I had no expectation that Mary would be able to answer me. I just took a chance. But if I had never taken that chance, I wouldn’t have experienced a moment of pure magic.

All it took was changing the format, and patience.

❤️

Autism : extras – teaching emotions

I had hand-drawn faces showing an emotion, and written labels to go with each one.

I limited them to Happy, Sad, Tired, Surprised, Worried, Sleeping, and Cross.

In the task in this video snippet, Ian has to read the word, match it with the relevant face, and then produce an approximation of the right facial expression.

Cue entertainment ….. 🤩 …. and listen carefully for Ian’s spontaneous “Do you need a tissue?” when I pretend to cry.

Autism : From the Inside – About the Author

About the Author

Fiona van Dokkum was born in Surrey a very long time ago, and grew up in Sussex, England.

Educated at Michael Hall School (a School which follows the teachings of the German Philosopher, Rudolph Steiner), she was a quiet, self-contained, creative child with a passion for animals, sewing, reading, writing, and being in Nature, anyhow, anywhere.

Finishing school in Cape Town, South Africa, Fiona toyed with the idea of going to university to study music (she played violin and piano), but was drawn in equal measure to archaeology and drama. A series of aptitude tests recommended she find a career working with plants or animals, preferably not people. So she went to Secretarial College, and became a surprisingly good Legal Secretary.

In her twenties, Fiona moved to Edinburgh with the love of her life, her Border Collie, Badger, where she lived and worked for over two years.

There, living 6,000 miles away from her family, she was presented with the perfect opportunity to indulge her love of the English language by writing long and descriptive letters home. She eventually realised, however, that she was utterly miserable and couldn’t wait to get back to Cape Town. Yes, Badger went too.

Today, Fiona lives with her wonderful husband, Neil, and their two sons, Rory and Ian, on a mountainside in County Waterford, enjoying “the best view in the world”. There, she writes, tends house, keeps bees and takes daily walks with the family’s manic Lurchers, Daisy and Molly, and the Whippet, Buttons.

Her first book, I Love My Bees, was published in 2010 by Northern Bee Books. Her most recent attempt at fiction is an as yet unpublished collection of three short fantasy stories, entitled Into the Woods. She has also written a blog about conquering sugar addiction – The Jellybean Journal – battling the sugar-daemon, https://isthatajellybeaniseebeforeme.wordpress.com/

Autism : From the Inside – on a personal note …

To my faithful reader in China,

I shared my book in its entirety for you, Chapters 1 to 24, plus Epilogue.

I do not know who you are, but I do know that you wouldn’t be able to get a copy of the book for yourself, and as you’ve been following my blog for a while, I thought you might appreciate knowing how our story began.

I hope you have found the book interesting. Perhaps you even found it helpful. I may never know. But it makes my heart glad that my words are being read on the other side of the world.

Stay well in these difficult times, and thank you for your support.

🙏🏻

The book is available as a whole at https://fromtheinsidedotorg.files.wordpress.com/2020/11/from-the-inside-2ed-2020-copy.pdf

❤️

Autism : From the Inside – Epilogue

I finished writing this book several years ago, and many things have changed since then.

After that disastrous January when our homeschooling programme fell apart, we coasted for many months. Ian spent his days at home with me and we passed our time together walking, shopping, going to cafés for tea, watching TV, reading, playing computer games, listening to music, and laughing. But of school there was none. Not in any formal sense. Ian learned quietly, obliquely almost, about life and his place in it. I continued to expand his word skills and did my best to keep him happy whilst at the same time keeping him awake, there, present and consciously participating. It was pleasant and comfortable for both of us.

And then a good friend who has a special needs child of her own sat me down and told me quite plainly that Ian needed more. Most importantly, he needed to learn to deal with his peers. Neil and I would not always be there, she said, and Ian had to be equipped to deal with a life filled with ‘his’ kind; he had to be able to deal now with a life beyond us. She apologised for being blunt, and I’m sure at the time I was disturbingly quiet and withdrawn, but only because I knew she was right. Ian had to go back to school.

So, we enrolled him in a Special School which had a class devoted to autistic children. It was a good place, welcoming and friendly, and the headmistress and staff were lovely people. But of course it fulfilled my deepest fears, didn’t it? What kind of example would be set for Ian when he spent every day faced with – and imitating – the behaviours of people like him, when that very behaviour was something we had worked so hard to modify? Confronted by the prospect of that, my heart was breaking.

On the other hand, for the first time in many years, I was free.

Yes, when the holidays were over and Ian went back to school, I did my little ‘Braveheart’ dance around the house, crying “Freedom!” to the silence. It was glorious, and I loved it. My time was my own.

What I had to learn to live with, though, was the guilt.

Guilt because I felt I’d failed him. Guilt, because for me, this was the easy option. Guilt even because I feared I wasn’t strong enough or brave enough to continue working with him myself, as I wanted to, because I believed it was the right thing for him.

– o 0 o –

Ian has been at school for several years now. He has grown up and become a man. He is so different from the little lad he used to be, it’s easy to forget. Now, children stare at him in the supermarket with a deep intensity, aware of his strangeness and unsure whether he’s to be trusted or feared. I see this and my heart is squeezed. He’s tall now and he remains strange. I’m not surprised they stare. How could they know my angel has a gentle soul and wouldn’t hurt a fly?

On the whole, Ian has coped well with school and participates in the many activities provided there. He enjoys his cookery and woodwork classes, and looks forward to being allowed to play on the school piano or the school computer. He isn’t pushed in any meaningful way, and because of this, of course he has regressed. He has withdrawn into his autistic self to a very large degree and although he can be drawn out easily enough, he’s a shadow of the bright child he used to be.

I remember how happy Ian was in his mainstream kindergarten class so many years ago, mixing with typical children of a younger age. How forgiving they were towards him, not yet fixed in their attitudes as to what behaviour should or shouldn’t be. How lucky we were to have experienced those few precious months in that beautiful environment, where Ian was growing and absorbing all that was good. What could have been achieved, I wonder now, if it had been possible for that to continue?

We will never know. Today, Ian is 18. He remains profoundly autistic. And yet… all the things he can do – his speech, his computer skills, his extraordinary and wonderful abilities – are ALL there because of the hundreds of hours the therapy team and I spent working with him, all those years ago.

Was it all worth it? Without hesitation, I can say it most definitely was. 

Would I do it again? In a heartbeat. 

Ruth was right all those years ago. The little shit was clever. He still is.

He is an amazing young man.

The End