Click to access from-the-inside-2ed-2020-copy.pdf
I am sharing this book as a pdf so it can be easily downloaded and shared with others. Please feel free to pass it around. https://fromtheinsidedotorg.files.wordpress.com/2020/11/from-the-inside-2ed-2020-copy.pdf
❤️
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 Her most recent attempt at fiction is an as yet unpublished collection of three short fantasy stories, entitled Into the Woods.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/
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–What age was Ian when he was first diagnosed with Autism?
Ian was just over two and a half years old when autism was first suggested. This diagnosis was finalised over the next couple of months – not that we had any doubts by then.
–When did you begin to feel that Ian may not be progressing as quickly as other children his age?
I felt that Ian was behind by the time he was one year old. Of course, I had only one other child to compare him to, and our other son, Rory’s milestones were on the early side so it was always an unfair comparison. But there were other things as well, things which were more subtle, more to do with the way he was, his isolation, his lack of engagement, the way he played, etc.
–What thoughts went through your mind when you were originally told of Ian’s diagnosis?
Initially? Probably very few! Shock, of course, but relief too. I’m a fighter, but you can only fight effectively when you know what you’re fighting against. The emotional response kicked in later. Coming to terms with something like this, a diagnosis like this, can be a slow process.
–I am aware that you spent some time living in South Africa, what country were you living in at the time of Ian’s diagnosis?
My husband is South African, and both my boys were born there. That was where Ian was diagnosed.
–What spurred your decision to move back to Ireland?
I love that Irish people always assume we have moved ‘home’, it is a beautiful thought, but neither of us has any Irish roots at all. We moved here because of an interest in Irish history, a desire to live in a safer environment in which to raise our children, and because we knew that Ireland was a visually beautiful place in which to live. We haven’t been disappointed in that at all.
–When it was time for Ian to begin school, did you have difficulty finding a school that would be suited to his needs?
Initially, we didn’t go down the school route at all. We implemented an early intervention programme in our own home, starting before Ian turned three. We kept this going for about two and a half years, and Ian made enormous strides, intellectually, verbally and socially. About six months after that, we moved to Ireland.
–What age was Ian when you made the decision to remove him from school?
Ian was six when I first home-schooled him in Ireland, simply because there was nothing else available for him at that time. When a place became available, I sent him to an Autism Unit at a nearby school.
–What was the basis behind your decision to remove Ian from that school?
Mostly because Ian regressed. I knew he needed more than was being offered. I had seen the joy Ian took in a particular style of learning, and even just from the act of learning itself. The autism unit seemed determined to treat him as if he were … not mentally competent … when I knew my child had a working mind in there that was open to learning. Ian loved knowing stuff – how can you deprive such a child of the opportunity to learn more? I couldn’t, so I took it upon myself to teach him.
–How many schools did Ian attend before you made the decision to remove him from school?
Just the one. It was enough.
–There is no doubt that home schooling any child is hard work, what did home schooling Ian entail?
You want a blow-by-blow? We would go into our ‘classroom’ together and sit at the table, and I would offer Ian his work for that morning, work sheets I had devised which might encourage him to think, participate, and speak. And he would read to me, and learn new words, and answer questions. And we would play games, and count, and do exercises, and name things, and draw, and write, and cut paper, and thread beads, and ……. Do you want me to go on? What should ANY child learn in school? Those are some of the things we did. And we laughed. Ian is funny, he has a highly developed sense of humour. He made me laugh a lot.
–How many hours a day did you spend specifically working on his education?
We usually did about three hours, but it was pretty intensive. He had breaks, ‘time-out’s between tasks, when he got to look at a book or play his keyboard or line up toys, or just jump about if that’s what he wanted to do, but they were short – in intensive one-to-one there’s no time-wasting like there is in normal school. Everything was focused on Ian, and keeping him present, listening, talking, paying attention. Intense, as I said. Three hours of that and you feel it. But it is so rewarding, and with each reward comes new energy, a new desire to continue.
–Did you ever struggle to keep a balance between Ian’s education and your day-to-day family life?
Yes and no. I was very aware of it. Ian’s education pretty much swamped my thoughts, both day and night, but I was careful to be mummy too. There was ‘school’ and then there wasn’t school.
–When did you begin to see that Ian was making much more progress than he had been in school?
Oh my word! You could see within a week! Just focusing on him properly, and giving him the time to answer properly, expecting him to answer properly, made a huge difference to him. Ian loved to learn, he loved knowing stuff, and he loved being able to give the right answers. And I would cheer and clap, and he would grin from ear to ear, sometimes laugh at me. We had lots of fun. I think teaching autistic kids should be about the child being quiet and the teacher being noisy – encouraging and praising. And there should always be laughter. Lots of laughter.
–Can you explain your feelings when Ian began to talk?
One thing you learn as the parent of a child with special needs, you recognise a miracle when you see one, and you accept it as exactly that: a miracle. It is huge, and humbling, and emotional. The first time Ian greeted me, on his own, in his own way, I cried. It was really quite over-whelming.
–What stage is Ian’s speech at now?
Ian has thousands of words in his head, but prefers not to use them. That is his choice. I respect that; sometimes I don’t want to speak either! Mostly he uses language to ask for what he wants – he likes being able to do that. If you can ask for stuff, you get stuff! But he USES language, which he wouldn’t have done otherwise. Sometimes we have conversations. They’re a bit strange, and often very short, but they are proper conversations. It’s always a joy when that happens.
–Do you think your method of educating Ian is the way forward in autistic education?
That’s an awkward question to answer. Every autistic child is so utterly individual – what’s it Hans Asperger said – ‘If you know one child with autism, you know one child with autism’? However, I do think it is necessary to move autistic children away from the syllabus which is currently being used and which is geared towards disabilities across the board. Autistic children are not the same as Down Syndrome children, nor are they brain damaged. They are unique. And there must be progression in their teaching – when I was working with Ian, if he answered a question correctly three or four times, he knew it, and I moved on, generalised it or increased the challenge or changed direction. Seeing Ian’s file from the school he attended with a year’s work in it, and it was merely the same few tasks over and over again, day in and day out, for a whole year, made me utterly depressed – and angry too. Where was the progression? Where was the challenge? Where was the child’s mind, in this sea of nonsensical repetition?
I wouldn’t say ‘my way was right’, not at all, but I do think there needs to be an attitude shift towards a greater recognition of the working mind within the autistic child.
–When did you make the decision to write about your experiences in a book? Did it take you a long time to decide you wanted to share your experiences with the public?
I wrote the book seven years ago. I had been thinking about it for a while, and when I finally sat down to write, it poured out of me in just two weeks. I don’t think I ever really focused on ‘sharing my experiences with the public’, I just hoped that my book might inform, and hopefully help. If I have helped even one person, helped them to think differently, or helped change the way they approach an autistic person, then I’m happy.
–I’ve been informed that you are currently writing a blog? Can you tell me a bit about the blog itself and the content?
The blog is really to expand on what’s in the book, and to share some background information, my thoughts since writing the book, and things which aren’t in it. It alternates between reminiscing and informing. Always, I hope to guide people towards a better understanding of the condition, of the idea that we always treated Ian like a normal kid with a few strange behaviours. I feel really strongly that people in services treat the condition, and not the child. I find this abhorrent. My son is a person, he is not ‘autism’, and he deserves to be treated like a thinking person and not a diagnosis.
–What is your opinion on the Irish education system and its support for Autistic children, and how do you find Autism awareness in Ireland?
The thing that breaks my heart is to read about parents being kept waiting for services. Everybody knows now, early intervention is the way to go – but being kept waiting for months, even years, makes a mockery of this. Nobody wants to be told they have to take the reins of their own child’s education – heavens, this is a welfare state, one has a right to expect appropriate help! But when that help doesn’t come, what can you do? I hope that my book might encourage people to realise that they know their child best, and that you don’t have to be a professional to make some kind of a difference. Any difference is a difference, if your child just learns to sit quietly for a few seconds, or point to something, or glance at you when you say his name, or finish a puzzle, or sit with you while you read a book … Any small thing is a step forward and worthy of a cheer. It doesn’t matter what it is. The next day you hope for another small step, and then another. And so on. There’s no ‘big picture’ here, just a succession of small steps. I’m just a mother who loves to teach, but I did it because I believed it was the right thing to do for my son, and I managed to make a difference to him, and to his life. I have no doubt there are other people out there who could do the same for their own children.
Generally, people in Ireland know about autism – these days I think everyone knows someone who has an autistic child, if it isn’t directly in their own family – but understanding what it means is hard to explain. My son is 19 and he behaves like a child. BUT he’s 19, and I can never forget that. You cannot treat him like a child because he’s not a child. There’s a duality there. Behaviour is just behaviour, it isn’t the core of who he is.
–Thank you, Fiona.
You’re most welcome.
I want to talk briefly about communication. No, actually, I want to talk about speech and language. Which, as you’ll see, is an entirely different thing.
I’ve talked about this in my lectures to college students, breaking down the Triangle of Impairment so often associated with autism – impairment in the spheres of Communication, Socialisation, and Imagination.
Communication is a misnomer, of course. You can’t tell me a dog can’t convey his desires – to be fed; to go outside; to be loved. All non-verbal beings communicate, definitely with each other and sometimes even with us, and often very effectively.
So, for ‘communication’, please read Speech and Language.
In its simplest form, Speech is the ability to form words. Language is the ability to use them descriptively or symbolically.
Echolalia is speech. Reciting large sections of movie dialogue is speech. Learned answers to questions is speech.
However, it must never be forgotten that for the autistic child, the gap between speech and language can be vast.
Some may never bridge that gap.
Some, like Ian, may use sentences learned as speech, to answer questions or express thoughts, i.e. using speech AS language. Memorised lines from Disney movies to answer questions, that sort of thing.
And just occasionally, if you’re really, really lucky, and happen to be paying attention and in the right place at the right time, you get to witness a miracle or two.
Miracle one —
I had to trim Ian’s toenails. Because of his constant toe-walking, his toes are under constant pressure, and a couple of them are slightly deformed as a result. Cutting Ian’s toenails is a difficult process, requiring care and concentration.
Ian made his little “be careful / it’s going to hurt” noise – “oo oo oo”.
I tried to reassure him. “It’s going to be okay, my lad.”
Ian looked concerned, and in a very serious voice, he said “I don’t think so.”
I stared at him for a moment, stunned.
Lack of confidence in my abilities aside, what a brilliant response!
Happily, on this occasion I managed to get the job done with no mishaps, and all was well.
Miracle two —
I wanted Ian in the bathroom.
It was time to brush his teeth before the taxi arrived to whisk him off to his day placement for a day of adventure and fun.
Ian was taking his time, and, impatient, I knocked on his door, twice. “Come on, lad! Come on!”
Ian skipped out of his bedroom with a grin on his face, and as he passed me, he called “Sorry!”
Perfect use of language.
And a complete surprise.
Moments like that really rock me back on my heels. Why can he do that sometimes, but not at others? Why does it happen so seldom?
I sigh at my thought process, and remind myself, If it happened every day, it wouldn’t be a miracle, would it?
I am posting a beautiful poem below to say goodbye. I’m not going to be writing any new blogs on this site, certainly for now. It seems I’ve said all I have in me to say.
In case you are wondering, Ian is now 27, content within himself, and doing very well.
Thank you for your companionship as Ian and I have wandered this crooked path together.
I hope you stay well and happy.
That is all.
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
SPECIAL
by Donna Ashworth
If you love a child who’s special
in the way their brain maps out
then chances are you know
what ‘tiger’ love is all about.
The need to fight their corner
when they’re up against that wall,
the instinct of the ‘mother’
which can make you 12 feet tall.
You’ll understand the surge of love
from deep within your soul
when that little fighter reaches
another hard-won goal.
The world can feel so scary
when you let them leave your door,
your heart within your mouth,
your stomach on the floor.
If you love a child who’s different
that the world can’t understand,
you’ll know the joyous moment
when they truly learn to stand.
Your pride is off the scale,
your love a wondrous thing.
I’m glad you know the special light
that special children bring.
Yesterday was Ian’s 26th birthday.
I don’t know when he grew up. He just did.
And didn’t, of course. The young man who is also a child, forever straddling the fence of childhood and adulthood, with a foot in each but never truly one thing or the other…
If I think about it too hard, I feel tired, and occasionally a little overwhelmed.
Ian was only ever a blessing to us. Even when it got difficult. Within the sphere of our little family, everything has always run smoothly and easily. Effortlessly, almost. We know how to keep Ian happy, and he knows what is required of him on a day-to-day basis. There is a pattern to the day, and it varies very little from week to week, month to month.
I am older now, just as Ian is. And today I find my head crowded with worries about Ian’s future. Not whether or not he will be cared for and looked after; that is already sorted. More along the lines of who will sing to him when he suggests it? Who will stroke his forehead when he’s tired? Who will hold him when he’s in pain? Who will push him that little bit when he needs reminding to get dressed, or move his chair in at the dinner table, or answer a question properly?
Who will mother the forever child, when his own mother is no longer there?
For this is the crux of our biggest worry : That people with autism have a normal life expectancy. My child could outlive me by decades.
I didn’t mean to get all serious – perhaps even a bit maudlin – when I started this latest blog. These are just the thoughts crowding my head this season of birthdays, both Ian’s and mine. But perhaps they are thoughts worth sharing, as the year winds down and winter (in the northern hemisphere) makes us all more introspective.
Ian had a good birthday, with presents (books, of course) that he was happy to receive, and homemade chocolate cake, and candles to blow out, and singing – which Ian led.
And now my “little angel sent from heaven” is a strapping 26-year-old.
Do you know what makes me happiest when I look at recent photographs of Ian? The laugh lines at the corners of his eyes! There, I can see the joy he takes in life. Evidence of all those times he was happy, and laughing. That’s all we want for our children, isn’t it? To see them happy.
If I have achieved nothing else, I have achieved that.
❤️
One thing I was determined to do while I was working with Ian at home, was take notes of our work together.
This began when we very first started the therapy programme in South Africa, where each therapist made notes on what they had done with Ian that day, so the others could read it for the next session or the next day, and keep abreast of changes or progress or things to watch out for.
When I was working with Ian on my own, my reasons for taking notes were slightly different.
Firstly, if you don’t keep a thorough record of progress, how are you ever going to know – clearly and definitively – that progress is being made? It’s easy to think ‘Oh, I’ll remember’, but I certainly wouldn’t have, not week by week, month by month. I knew it would be better if I wrote it down, accurately and honestly, as I went along.
Secondly, I kept notes because I lived in fear of the Schools’ Inspector. If he paid me an unscheduled visit, would I have anything that looked like anything to show him?
So I wrote notes.
Endless notes …
I filled books with details of Ian’s schoolwork, his progress, his successes, and his failings.
Of course, the Inspector never did visit. But I still have all the books, all that proof of our hours together.
They were in a box I came across recently, labelled ‘Ian’s School Stuff’, along with assorted paraphernalia from our school-room. One of the things in there was a clip tightly holding onto a collection of laminated single words.
I’d forgotten about these. This wasn’t a sentence-building exercise. This was to help Ian with his reading.
Ian often struggled to get from one word to the next, so I would line up a group of random words (obviously words Ian could already read!), and ask him to read them as quickly as possible.
I would read them to him first, to demonstrate, and then he would have a go.
Ian struggled with this at first, falling over some of the words, and occasionally reading them really slowly and carefully, but after a while he got into it and was surprisingly good at rattling off lengthy streams of random words. And it helped Ian to read more fluently, which was fantastic.
I lined up a few of them on the kitchen table this evening, and asked Ian to read them. Very obligingly, he did. Not as speedy as he used to be, but not bad.
So.
Keep the notes.
You never know when you’ll need them.
And keep the paraphernalia; you never know when you’ll want to check if a task is still remembered!
😊
When Ian was having his bath this evening, he was in a lovely frame of mind. All smiles and good humour.
I decided to capitalise on the moment and ask him a couple of questions about opposites – not the usual ones, we’ve done those to death – but ones that would make him think. I was curious to see what his answers would be.
“Ian,” I asked him casually, “what’s the opposite of woman?”
Ian was quiet for a while, then he gave me a huge grin and said “Man!”
I laughed, but I was surprised too. Ian is picking up the most extraordinary things these days, entirely by himself.
I challenged him again.
“Ian, what’s the opposite of child?”
There was a lengthy silence while Ian thought about this one. Then he looked up at me, and answered –
“Love”
It’s not the answer I was expecting – ‘adult’, or ‘grown-up’ – but if you think about it, that is a pretty clever answer.
It’s the adults in Ian’s life who give him love.
Isn’t he amazing?
Yesterday was Ian’s second vaccination.
I don’t know what I expected. I had probably been lulled into a false sense of security by the success of the first.
It was bad, folks. Really bad.
As soon as Ian got a sense of what was going to happen, he resisted. I spoke to him gently, holding his face in my hands, looking into his eyes, and he listened and sat quietly, but the minute I tried to fold up the sleeve of his T-shirt, he pulled it down again and made it clear he wasn’t going to cooperate, twisting away from me, saying “No-no-no, please, mummy.”
This went on for five minutes. Maybe yes … he sat quietly … then definitely no.
Another nurse was called in. She held Ian’s arms from the front. I rested my hands on Ian’s shoulders from behind. And it all kicked off from there.
Ian started shouting, twisting himself this way and that in the chair. “No!” … “No!” … “NO!” … “NO!” … “NONONONONONO!”
I could feel him escalate from resistance to all out panic, and I raised my voice to call a halt to proceedings.
I shouted twice : “Stop! … Stop!” But the nurses couldn’t hear me through my face mask, over Ian.
I ripped off my mask – my one earring went flying across the room – and in desperation I shouted right in the nurse’s face –
And just like that, it was over.
In the ensuing silence, I held Ian around his shoulders, leaning my head against his neck, and I wept hot tears of shame and remorse.
Capacity bedamned, my son had shown us all, clearly and unequivocally, that he did not consent to this fiasco.
The nurses fussed over me like mother hens – I was offered tissues and tea and reassurances and a glass of water – and all I could do was hold my son’s hands and apologise to him as tears streamed down my face.
I was broken.
We left as soon as I could extricate myself from the nurses’ care, and I bolted for the car with Ian beside me.
Two days later, and Ian seems none the worse for the experience.
I am still recovering.
All I will say is this : Never again, people.
Never. Again.
I’ve mentioned before that I don’t believe autistic people have no imagination.
I do believe that just because you can’t accurately test for something doesn’t mean it doesn’t exist – and to the fullest extent.
“Three studies are reported that address the often described impoverished creativity in autism. Using the Torrance Creativity Tests, Experiment 1 found that children with autism and Asperger syndrome (AS) showed impairments. Experiment 2 tested two explanations of these results: the executive dysfunction and the imagination deficit hypotheses. Results supported both hypotheses. Children with autism and AS could generate possible novel changes to an object, though they generated fewer of these relative to controls. Furthermore, these were all reality-based, rather than imaginative. Experiment 3 extended this using a test of imaginative fluency. Children with autism and AS generated fewer suggestions involving attribution of animacy to foam shapes, compared to controls, instead generating reality-based suggestions of what the shapes could be. Although this is evidence of executive dysfunction, it does not directly account for why imaginative creativity is more difficult than reality-based creativity.” https://pubmed.ncbi.nlm.nih.gov/10478731/
“Impoverished creativity”. Isn’t that just the most awful phrase?
I have wondered many times over the years how active Ian’s imagination is – even in the earliest days, when he was in his room, chuckling to himself. What was going on in his head then? What pictures did he see that entertained him so? He was completely alone, and laughing like he was watching something really funny.
It could have been creepy as hell, but it was actually delightful.
However, when your child hears a piece of music you happen to enjoy, playing in the background as you drive around, and then asks the next day for “Brown red music, please, Mummy”, you know you’re dealing with something a little bit special.
The music was ‘Celestial Soda Pop’ by Ray Lynch on his album “Deep Breakfast”.
Does Ian have synesthesia? We may never know. But something was going on.
(“Synesthesia is a neurological condition in which information meant to stimulate one of your senses stimulates several of your senses – Synesthetes can often “see” music as colors when they hear it, and “taste” textures like “round” or “pointy” when they eat foods.” https://www.healthline.com/health/synesthesia )
And while synesthesia isn’t specifically to do with imagination, it does give us a clue as to what is going on in the brain : colours and pictures. And imagination is all about pictures.
In the course of my (albeit very limited) research for this blog, I came across a very interesting article, written by someone on the spectrum themselves — he says “People see autistic kids lining up Hot Wheels or sorting Legos by color and assume there isn’t a whole lot going on in the imagination department. As someone who spent a lot of time in organizational-type play as a kid, I can assure you that I had a vivid imagination.”
(See full article here https://musingsofanaspie.com/2013/02/12/two-factor-imagination-scale-tfis-test/ )
It was interesting, and as always, useful to get an ‘inside’ point of view.
Getting back to my son, however, I often flick through Ian’s internet searches on his iPad at the end of the day to see where his mind has taken him. Sometimes his journey is obvious – a succession of the music he enjoys, or snippets from his favourite films on YouTube – but occasionally, he has wandered into a realm where, if he does not have an active imagination, there is absolutely no reason for him to be there.
Like the day he’d Googled ‘green water splash’ —
Or ‘red circles’ (although, admittedly, he could have been experimenting with self-hypnosis with these, couldn’t he?) —
Or ‘Caribbean blue sea’ – after listening to the song ‘Caribbean Blue’ by Enya —
There is no reason for Ian to be looking at these images unless his imagination is somehow, in some way, working.
He goes to strange and unexpected places, this we know, but yesterday was a corker.
I went into Ian’s room where he was lying quietly on his bed with his iPad, and I sneaked a peek at what had caught his interest that day.
This was a new one —
The webshop for physiotherapy.
Seriously, what???
He’ll never tell us, of course, and that’s a real shame because I for one would have loved to have known the thoughts behind that search.
One thing was for sure : Ian was imagining something. I will never doubt that, and just because he can’t express it doesn’t mean I won’t feel joy when I witness it.
Every single time.
😊
My dearest Ian,
When you were born, I had no clue about the adventures waiting for me or about the challenges you would present, or the things I would need to learn, academically, personally, and emotionally.
I didn’t know then that I would have to watch The Many Adventures of Winnie the Pooh five hundred times, or that I would enjoy watching it five hundred times, with you.
I didn’t know that I would have a child who would stay home way past his teens, and will quite possibly stay home until the end of my life.
I didn’t know how much joy could be found in the smallest things, like getting a smile out of you, or giving you a hug, or watching your concentration as you try to remember the correct response to a question, or hearing you correct yourself when you misspeak.
I didn’t know then that tears in your eyes would tear me to shreds, or that seeing you in distress was the worst thing for me in the whole wide world, and that each time it happened it would be forever seared into my soul, a psychic wound from which I would struggle to recover.
My ‘little orange boy’, with the fuzz of auburn hair that stuck straight up off your head, with the golden skin and russet-brown eyes. I called you Tiger then. Perhaps I always knew you had a battle ahead of you. Perhaps your rarity of soul just spoke to me. My little angel sent from heaven. My beautiful cuddly teddy bear of a child, who glowed in dreamland as if his aura were his own personal nightlight.
You may never know what you mean to us, and perhaps that doesn’t matter. I just hope you feel safe, and loved, and special. Your autism could have broken us, but somehow it made us stronger, and we – all of us – are better people because of it. You are the keystone of our little family, the heart around which we all revolve.
I have gained so much from knowing you. I have met people I never would have met; I’ve spoken to students about autism, something I never would have dreamed I could do, and never would have done had it not been for you; I have learned about what it means to be a human on a different path; I have learned to laugh in the face of awful adversity, and genuinely crazy situations; I have fought for you; I have cried for you; and I have made friends because of you, and found my soul sister, someone I never would have met but for you.
You are an amazing human being. And your autism is 100% a part of that.
Your life has taken us on an extraordinary journey – at times a bit of a rollercoaster it’s true – but also a journey of love. I am so proud of you, young man.
Until the next time you ask for movies …
… I’ll be here.
I love you.
Mum xx
I have spent a lot of time on this blog talking about how autistic Ian is. There can be no doubt, I suppose. It’s pretty much there, in your face, front and centre.
So, in the hope of writing something a little bit different, and perhaps a little more positive, I found myself wondering: What is there about Ian that isn’t autistic?
Is there anything?
Let’s go through some areas of his life, and see …
The way he walks?
Well, almost. Except that he has a way of walking which is … gentle. Almost as though he steps carefully. He toe-walks, of course, he always has, and because of this, his feet are exceptionally broad.
We have his shoes handmade by a company in South Africa who make leather footwear, because they take Ian’s foot measurements seriously, have created perfect lasts of Ian’s feet, and the shoes they make actually fit him.
Even buying them, bespoke, from overseas and paying for delivery to Ireland, the shoes cost us less than handmade shoes would cost here – if we could get someone to believe Ian’s foot measurements, which proved impossible when we tried.
So Ian’s shoes are unusual, and the footprints he leaves are unusual, and the way he walks is unusual, too.
The way he talks?
If we discount the frequent snippets of video footage, and strange other-worldly sounds which emerge, and judge solely on his voice … maybe. If you can hear him.
Ian speaks softly and often quickly, so it’s easy to miss what he says. If he’s reading out loud, there will be strange emphasis on certain words, and no normal cadence to the sentence, so the delivery can seem a little strange.
But he pronounces words beautifully, even a more unusual word, like croissants. He does enjoy a croissant.
The way he looks ?
I suppose in photographs there is nothing to show that Ian is autistic. He looks normal, doesn’t he? Okay, his skin is paler than anyone else in his family, and his eyelashes are longer, and because of his toe-walking he has a marked pelvic tilt, and heaven forbid you ask him to smile for a photograph because you’ll get a grimace, but on the whole, Ian looks okay.
Actually, better than okay. He’s a handsome chap, and draws furtive glances wherever he goes.
The way he eats?
Hooboy. No. Definitely not. Well, not in our culture, anyway. Ian eats almost exclusively with his fingers, and his diet is very limited.
The way he dresses?
Given that Ian would happily spend the day in only his underpants – or even completely naked – he’s on the outskirts of social behaviour with this one. He’d fit right into a nudist colony. He’d be a raving exhibitionist, if he didn’t completely lack the awareness of his own nudity, or what it means to other people or society.
But he does wear normal clothes when we go out, and he wears them well.
The way he reads a book?
Almost. Until you realise that he’s read the same book a hundred times, and is flicking the pages so quickly even a world-class speed reader would have trouble keeping up. Why pause over the words when you already have them in your head?
He’ll occasionally turn the book upside down, just to see the pictures from a different angle. He could probably read it perfectly well. His brain is like that. (Mine too, upside down and backwards – I wonder where I get it from …?)
The way Ian watches a film?
Maybe, if you use the verb ‘to watch’ very loosely, and ignore the intermittent blasts of hand-flapping which appear.
Ian is happy that the film is on in the same way that his dad is happy the sport is on, behind him, with the sound off.
Television as security blanket.
The way he travels in a car?
Potentially, if you ignore the hand movements and his occasional imperious commands of “That way” (complete with pointing finger) when there is more than one road to a particular place.
His car door is locked. The windows are locked too, because he figured out that he could wind the window down and open the door from the outside. Autistic, not stupid. And he has a sticker in his window, just in case there’s ever an accident and I’m unconscious or worse, just to alert emergency services.
So where are we?
We’ve covered a lot of Ian’s life. Of course we haven’t covered every single thing – I’m sure that’s not possible – and some of it (like toileting) I don’t want to cover anyway.
But here are some positives –
Ian gives the best hugs.
He has a really beautiful smile, when it happens spontaneously.
He has a highly developed sense of humour.
He has a very good ear for music, used to sing with near-perfect pitch (before his voice broke), and taught himself to play the keyboard.
And he types like the wind. Really, really fast, accurately, and with only two fingers.
What more could you want?
I have been pondering the nature of fear, particularly in a behavioural and anthropological context.
I wrote in my book “… other children stare at [Ian] in the supermarket with a deep intensity, aware of his strangeness and unsure whether he’s to be trusted or feared.”
We fear what we don’t know. We fear what is unpredictable. We fear the strange and the unusual.
“People with a mental illness are typically perceived as being dangerous, unpredictable and different.” https://www.tandfonline.com/doi/abs/10.1080/09585189508409874
And you don’t get more ‘unpredictable and different’ than the behaviour of an autistic person. I mean a profoundly autistic one, not someone on the spectrum who has worked hard at it and managed to control their autistic behaviours and mannerisms, and found a workable niche in society. Good for them. I admire that enormously.
Ian’s behaviour is not predictable. Frequently, it is simply odd. And sometimes, when he gets alarmed, it could – and has been – perceived as threatening. It isn’t. But it has been perceived as such. (See my blog entitled “Autism : Listening to the people who matter”).
Anthropologically, fear has kept us alive, and it takes a lot of nerve to get beyond it.
I’m the kind of person who steps into the strangeness. I’m the one who walks into the dog fight to break it up – call it courage or call it foolishness, your choice – and I’m sure it’s no accident that I ended up with one of the strangest kids on the block, but it has definitely made being Ian’s parent easier. His weirdness doesn’t phase me. If he gets pushy, I’m the one in his face asking him what’s going on and defusing the situation as best I possibly can.
But other people don’t necessarily have the advantages (or craziness) that I have.
“Kids (and adults) with autism behave differently from other people. And if there’s one thing experience teaches us, it’s the fact that differences can be scary. Children with autism are taught to avoid “unexpected” responses to others—not because they are in any way harmful, but because the “unexpected” (rocking, flapping, asking the wrong question, repeating the same words, etc.) frightens people.” https://www.verywellhealth.com/why-is-autism-so-scary-260604
The behaviour of some autistic children can be very, very challenging, and it frightens us because we’re meant to be afraid.
“At the basic level fear guides our fight or flight responses and helps to keep us safe and alive. Fear heightens your senses and awareness; it keeps you alert and helps in better preparation.” https://www.thriveyard.com/the-positive-side-of-fear-15-benefits-of-fear/
Wikipedia has a very good dissection of fear at https://en.wikipedia.org/wiki/Fear and I found this interesting, too — https://www.healthline.com/health/understanding-and-overcoming-fear-of-the-unknown#overcoming-fear
So how do we combat it? How do we encourage our unpredictable ‘frightening’ children to stop scaring people? And – perhaps the most important question – should we?
In some ways, it’s like owning a dog. Bear with me here, it will make sense, I promise …
Imagine you have a big dog. He’s yours; you’ve had him since he was very small. You know he has a heart of gold; you know he loves people and he would never hurt anyone. He might pull on the lead to say hello to someone when you’re out for a walk. He’s strong. You hold him back because it’s polite. You try not to let him just bulldoze his way into that person’s space.
A stranger sees that dog, the size of its teeth, the length of its tongue, and they see you pulling him back. All they can wonder at that moment is: Are you strong enough to hold him?
It doesn’t matter if you say “He’s fine! He’s friendly!” because in the absence of further knowledge (or instinct) that stranger can’t read the dog’s body language. All they are conscious of is unpredictability, and all they hear is their amygdala screaming at them to run.
Now transfer that situation to my child. He’s an adult now. He’s taller than me. He’s slender but he’s a grown-up. That much is obvious – and I have encouraged that notion by helping him cultivate a beard. It’s harder to treat him like a child when he definitely doesn’t look like one, no matter how he behaves.
We are in the supermarket together, Ian and I. Ian decides he wants a particular type of bread. He makes a bee-line for it, regardless of who may be in his way. Social space and autism do not go hand in hand – see https://iancommunity.org/ssc/personal-space-autism. I happen to be holding his arm, and I try to control his forward movement so he doesn’t just push past a stranger.
The stranger turns, and sees Ian lunge towards her. There is a flash of fear in her eyes. It’s quick, there and gone – she’s seen me and she controls the fear in the space of a blink – but I have seen it. And I cannot unsee it. This woman, this stranger, was afraid, even for the merest moment, of my son. Because his behaviour is unpredictable. Because he was behaving outside the socially accepted norm.
Of course, the stranger carries her own history, her own baggage. She may be afraid of men generally. I would never know. The fact remains that in that moment my son engendered a fear response, and all I can do is apologise.
We worked hard, when Ian was in his intensive therapy programme, to modify his behaviour. We reduced the oddities; we encouraged the ‘normal’; we moulded him as best we could – rightly or wrongly – into a socially acceptable human being. For many years, it worked. Ian was as ‘normal’ as he could possibly be.
“Normal is also used to describe individual behavior that conforms to the most common behavior in society (known as conformity). However, normal behavior is often only recognized in contrast to abnormality. In its simplest form, normality is seen as good while abnormality is seen as bad. Someone being seen as normal or not normal can have social ramifications, such as being included, excluded or stigmatized by wider society.” https://en.wikipedia.org/wiki/Normality_(behavior)
But in the absence of continued pressure – no matter how gentle – to behave this way, Ian reverted to type. Like a turtle, he stuck his head out of his autistic ‘shell’, and played in the real world for a while. But when there were no checks on his behaviour; when he was surrounded by people who – their best intentions aside – accepted however he behaved because he’s autistic and that’s how autistic people behave – he regressed to his personal lowest common denominator, profoundly autistic, and retreated into his carapace once again.
And so I am left with a young man who scares people who don’t know him. People who see him as ‘unpredictable’, and therefore as potentially dangerous.
As I wrote in my book “I see this and my heart is squeezed. How could they know my angel has a gentle soul and wouldn’t hurt a fly?”
It’s a tough one. We know our sons and daughters. We know the limits and nuances of their behaviour. Other people don’t. Perhaps we just have to accept that on some level, our children’s unpredictability will always flick that fear response in strangers.
It’s no fun, but it is one more challenge that we, as the parents of people with autism, have to face.
From the Inside 