This book is dedicated to the children of Dale’s generation who, like him, are now adults living with autism. There are incalculable numbers of adults that have not been as fortunate as Dale to have received the right education or support. Dale’s desire is that this book will give his generation new hope to help them pursue a similar quality of life, like any other adult in society.
Contents
TITLE PAGE
DEDICATION
PREFACE
1 After Henry
2 Awareness
3 Transitions
4 Calm Before the Storm
5 Eye of the Storm
6 Maelstrom
7 Progress
8 Different Places
9 Different Faces
10 Colours of Autism
11 Highs and Lows
12 Open and Closed Doors
13 The Chauffeur
14 Enough Is Enough
15 The Last Straw
16 Moving On
17 Man’s Best Friend
18 New Horizons
Postscript
In Their Own Words
Endnotes
Copyright
Preface
1991. Where were we? Dale, my three-year-old son, was trapped in his terrifying, autistic world and I was lost too. Yet, somehow, I had the maternal remit to rescue him. Desperate, I drove the thirty miles to Glasgow, seeking a new support group, wanting answers, needing to cling to the slightest chance of hope . . . any hope.
Well, I didn’t find hope. I found this:
My child is four years old and severely autistic. I’ve been told we have to fight for adult provision for him now.
That night was the beginning of an incredible eighteen-year journey I would travel with Dale. He would emerge from that lonely world, with me battling beside him. After all, during those years I had the best teacher of all, a certain Henry – all four legs and tail – our beautiful, noble golden retriever. Everyone who knew him agreed. He was to become Dale’s first real friend and he was the perfect gentleman.
This was no ordinary dog. He did the extraordinary: he gave me hope when I had none. It was Henry who freed my tormented son and it was Henry who would throw us both the lifeline we needed. Dale’s autism was so severe that family life was extremely difficult. Any break in Dale’s usual routine could cause severe tantrums, and we simply didn’t know what to do, how to get through to our son and give him the help he so badly needed. Then Henry arrived and the bond he formed with Dale provided the breakthrough we had so desperately wanted. His arrival in Dale’s life helped bring my son out of his autistic world and gave us a way to communicate that simply had not been there before. Henry unlocked Dale’s world and gave us hope for our son’s future, which is the most incredible feeling for any parent. And led by Henry, I believed we had made it to adulthood, problem solved. I was able to see Dale’s future; he would be a confident, fully productive, professional member of society. I thought him secure. Likely anyone reading my earlier book had every reason to believe that too. Would that it were to be that simple.
. . . we have to fight for adult provision . . .
Eighteen years on, that parent’s words would come back to haunt me. Repeatedly. Dale had caught up with society, but had society caught up with him? We were about to find out. Those early adult years would become the most challenging of times. For both of us.
Easter Sunday, 17 April 2006 was the night Henry died. That beautiful dog had led not only his young master into the world but he had made our family life, well, a family life! How would his death affect my seventeen-year-old Dale’s future? How would it affect all of us? Strangely, the one thing I needn’t have worried about was how my son would cope with this most painful of losses.
As Henry lay dying, only a mature man could have done what he did. Just as Henry had helped Dale all his life, now it was Dale’s turn to help him. My son assisted the vet, allowing Henry a comfortable and loving death. I stood back in awe.
“You’re going to be all right now, Henry. This jag will make you feel better,” said Dale.
With these heartbreaking words, I realised that my son was able to allow his precious dog to die, and more: I learned that Dale would never let slip the better future Henry had given him, however challenging that might prove to be.
“Mum, due to Henry I am not scared any more of being an adult. I have decided that for the rest of my life I am never going to let my amazing dog down, so that he will be proud of me, as I will always be of him.”
This would not be Henry’s final gift to my son, nor indeed to me and my daughter, Amy.
Amy was my millennium miracle baby, who had been diagnosed with moderate autism when she was only two years old. Thankfully, because of lessons learned from Dale and Henry, she was able to develop at an impressive rate. At five, she had already caught up with her brother. Both now are considered to have high-functioning autism. Unlike Dale at five, Amy’s vocabulary was extensive and she utilised it well. Too well! She became The Interrogator! She could take ownership of any conversation and turn it around to her own obsession – horses. Once in control, she would question to her heart’s content, whatever anyone else might think!
But what did anyone else think? Over these twenty-four years of bringing up two children with very different kinds of high-functioning autism (Autism Spectrum Disorder or ASD, as it has come to be known), I have seen change. I have seen society accept the condition as a recognised disability. So far, so good. But is it enough? Life should be fine by now, shouldn’t it?
With the help of Henry, these are issues I have faced every day of my life as a mother, trying to find ways to help my children be all they can be and facing the challenges life throws at them every single day. But, of course, I am not alone, and with over half a million people in the UK affected, this is a major issue for our society. This figure includes Asperger’s syndrome (AS), which is the highest level of functioning on the spectrum.
To help understand autism a little more, there are three main aspects that make it the lifelong disability that it is. The first of the triad is communication, and some will be unable to speak at all. All affected will have problems interpreting non-verbal communication, body language being completely incomprehensible to them. If that weren’t bad enough, then there is the sufferer’s literal understanding of language to add to the mix. Let me explain how that works using the true story of Philip, when he had to resit his driving test.{1}
Examiner 1: Can you read the number plate of the green car over there?
Philip: Silence.
Examiner 2: Philip, he is talking to you.
Philip: Oh, sorry!
Examiner 1: Philip, can you read the number plate of the green car over there?
Philip: Yes, thank you.
Examiner 1: Go on then.
Philip: I have.
Examiner 1: Can you read it for me, please?
Philip: I have read it twice already!
Examiner 2: Philip, would you please read out loud the number of the green car over there?
Philip: J123 VOS.
Is it any wonder that many with autism choose not to speak at all? As Dale revealed when he was a child, he would have chosen not to talk to us had we not communicated with him via Henry. To this day, Dale’s remark chills me. What might not have been?
The second part of the triad is difficulty with social interaction. All social skills have to be learned; they don’t come naturally, understanding the complexities of emotions, feelings and empathy. Sufferers have problems understanding social rules and how to navigate society.
Nowadays, we are also aware that many with autism endure the distress and discomfort of sensory-processing issues. When Dale was
young, I suspected he was affected and adapted things as best I could. Thirteen years later, he told me about his sensory problems – the smell of some foods, the colour combinations, the textures – some of which were the catalyst for many of his most challenging tantrums.
The third leg of the triad is difficulty with social imagination, not being able to understand people’s behaviour or abstract ideas, their thoughts or feelings, including in times of danger and crisis.
This explanation of autism is far from exhaustive, but again, this is never to be forgotten: anyone with autism can learn and develop with the right condition-specific education and support. Amy, Dale and thousands of their peers in society are proof of that.
Where were we?
Six months before Henry’s passing, Dale had the foresight to acquire a puppy, and insisted on calling him . . . Henry! We managed to live quite normally with two golden retrievers in our home with the same name. It was amusing how both dogs responded with only the words Wee and Sir to distinguish them. Dale knew that Wee would never replace Sir, but he needed to hold onto that name. And quite rightly, too!
I didn’t realise at the time, but I was beginning an extraordinary new voyage. I was to travel to places in the world, far further than I could ever have imagined. It was all because of autism. By visiting these places, I was able to continue the work that Henry had begun. Dale and Henry had shone a light in a dark place. That light was nowhere near ready to go out! Already, thanks to Henry, we were in a happier, safer place. Both my children were reaching out to consider exciting futures, just as their neuro-typical peers – others not affected by autism – were doing.
This is the story of our journey together into those futures. This time though, unlike my earlier excursions at the family helm, I would not be alone, and it would be no mystery tour. I was in the safest hands possible, with my strong, brave tour guide beside me, my now adult son Dale. However, to begin this new journey, as a family we had to get through the hardest day of all.
The first day without Sir Henry.
1
After Henry
My husband Jamie was awakened by a damp nose nuzzling his face, a paw nudging – by someone who was not about to be ignored! Wee Henry (or Henry, as he was now) had slept in Dale’s room since puppyhood when Sir could no longer manage the stairs. By the time his elder had gone, Wee Henry knew with certainty that he was Dale’s dog.
Returning from his morning constitutional, Henry demanded his breakfast. He refused to settle without a full stomach – 6 a.m. or not – just like his namesake. It felt strange to hear Jamie call “Henry” now, even though the youngster seemed to have accepted his reformed name. Suddenly, I heard loud sobbing from Jamie.
“What’s wrong?” I asked.
“It’s Henry. He won’t eat his breakfast. I put his bowl on Sir’s step. He just won’t do it.”
We had let Henry eat there to show him he was now the top dog, but there he laid, head between paws, big brown eyes staring and depressed. No amount of reassuring or coaxing interested him. I placed his bowl on his usual table. Wolf! He devoured his meal in seconds, followed me back to my bedroom, and joined me in bed.
An hour later on that Easter Monday and Henry wasn’t my only bedmate. There was Amy, fast asleep. I can’t say it was a surprise to see her there. Regularly, she ended up in between Jamie and me, just as a younger Dale had done (but at least he hadn’t sneaked in until later). In good faith, we always started her off in her own bed, in her lovely horse-decorated bedroom, with that all-important routine, but it didn’t take long for her to limber up for her marathon – up and down, all night. After numerous failed attempts to return her to her own bed, one of us would climb into her wee bed to try to settle her there. Some nights the musical bed routine was so shattering that by the morning one parent was with her in our double bed, and the other would be camped in her single one. We could hardly remember how or when it happened, but happen it did! No wonder we called it the “Bed-a-thon”!
I was aware she had heightened sensory issues. Even as a baby, she sought comfort by playing with my hair, which lulled her to sleep. In a sense, she had perhaps “over bonded” with me. Now she was six and I felt I had exhausted all means to get her to stay in her own bed. No, we were just exhausted! Well, the tide didn’t stop for Canute, and the business of the Gardner household day wasn’t going to stop just because of mere parental burn out!
Now that Henry was awake, Dale was too. Looking for comfort, he came in. I reckon Sauchiehall Street was quieter that morning! His dad gave him a big, manly hug, and set off, hoping that work would take his mind off Sir’s death. As Jamie left, I suggested Dale pop in whilst I made all of us a pot of tea. Thankfully, we had a king-size bed! Henry was sprawled out, sleeping deeply, on a third of the space. We all squeezed together and enjoyed the security.
As Dale and I sat up, sipping our comforting cup and musing sadly, suddenly we heard a familiar voice. From the middle of the duvet we learned . . . The Interrogator was awake!
“Nuala, what’s Dale doing in our bed?”
Amy called me by my first name, and had done so since she was four, when I taught her the rules of conversational turn-taking. I explained that she needed to wait her turn to speak, and then say the person’s name. I should have known better! Autistic children learn in a literal way, and Amy applied this rule exactly. “NUALA!”
Now she was wide awake, bolt upright between us, and she needed answers.
“Nuala, what’s wrong? Why is Dale sad?”
I cuddled her, warning her that I had sad news. Sad news usually meant that someone or something had died. We shared our saddest news of all over breakfast in bed.
Eventually, I suggested we needed to move on, to get out of the house. We weren’t in the mood to do anything special but had to get through this, so we headed for Glasgow to buy Dale his first tailored suit. He had already been to a couple of funerals in hired suits, and I thought for future job interviews and the like it was time he had one of his own. Having dropped Amy and Henry off at her grandparents’, we headed off to Glasgow’s famous tailor, Slater’s. The shop assistant was very helpful and understanding when we explained why Dale was getting his first suit. Having a grandson of his own with a profound disability, he grasped the real significance of this event.
I saw my son emerge from the changing rooms, and my soul swelled. What a handsome grown man he had become! Remembering that lost and lonely child, that child who had spent days rocking in a corner of a room, unable to communicate or relate, I thought, Wow! Look at my incredible, handsome son now!
Dale chose the most expensive outfit on the rail – the designer suit. I realised I was going to take the financial hit when, as he modelled it, the assistant explained that a famous local footballer had chosen that very one. Dale had learned how to “fit in” by following good role models, so when he heard someone successful had bought the same suit, there was never any choice!
Suit bought, Dale declared he was hungry. That was always a good sign! We headed for a Chinese restaurant, ate ravenously and headed home.
That night we all sat watching television. Henry was cuddled up beside Dale on one sofa, while Amy sat snug between her dad and me on the other. Life seemed quite normal again, but I reflected on what she had taught me in bed that morning. I had assumed because horses were her world, she would be less affected by Henry’s death. So wrong! On that first morning without our beloved Sir, Dale and I sat listening to our personal Interrogator.
“Amy, Dale and I are sad because, when you were sleeping, Sir Henry died and he is now in Heaven.”
I hugged her tightly, while we braced ourselves for her response.
She screamed. “Buy another one! Please, please, Nuala, buy another one!”
Her body shook, distressed. She shouted this phrase, repeatedly. You might well conclude that she was a ruined, unfeeling little girl, simply wanting a replacement for a broken toy. Again, so wrong. Calming her, I extracted more
information. She clung on, burying her head in my chest, unable to look.
“Nuala, I will miss Sir Henry – my dog Harry – and my special horse has now gone.”
Immediately I understood. “Harry” was the name she had given Henry when she was a toddler with emergent autism. Henry was Dale’s dog, while Harry was Amy’s. Now, I was confused regarding her special horse, until she explained. “Nuala, Harry was sometimes my special horse that I liked to play with.”
At three, when Amy adopted horses as her main love and obsession, I watched her groom Henry with her horse kit. She would attach a horse lead rope to his collar and walk him around the house. At the time, I thought that she was simply using her horse kit in a literal way with the dog. After all, she was unable to tell me otherwise. It never occurred to me that she was role-playing, and at that young age, showing the green shoots of imagination. Then, I believed she had none.
It was not the only time I underestimated my daughter. Amy nurtured her equine obsession at the Ardgown Riding School. In the centre of the estate there was a one-hundred-year-old oak. During her pony walks, Amy would be led around it a couple of times, blank-faced, expressionless, and uninterested in her walk and the environment. Despite this, she went every Sunday for years. Visiting Ardgown five years later, Amy was upset to discover that the tree had been felled.
“Nuala, Nuala. I am so sad . . . because my big tree is gone! I liked to pretend I was on a real horse carousel when I went around my tree.”
At the same age, Dale had adopted a similar big, old tree which, miraculously, gave him his first word. I have learned that children with autism have extraordinary, albeit different, imaginations. We must embrace their obsessions, use them in a positive way to connect with them and teach them. That is why we need to take time in observing the child with autism at play. The pace and type of play may differ, but never doubt it: that child is learning and exploring.
All Because of Henry Page 1
