Dale and Henry’s story broke in 1995, when I won a short story writing competition. I could never have dreamed how it would change all of our lives forever – and not just ours, but the lives of thousands of others affected by autism. At the time there was vast media interest in Dale’s story, eventually leading to one of the best projects I would ever participate in, one which would raise autism awareness to 6.5 million people in the UK mainstream alone.
For the next nine years, I worked closely with the screenwriter, Lindsey Hill. Nine script drafts later, After Thomas, the ITV drama of our story, emerged. Henry’s name had to be changed to Thomas as there had been too many film industry projects called After Henry. The production company at Hartswood films, together with the incredible passion of the producer, Elaine Cameron, secured the first airing, on Boxing Bay 2006, going head to head with Pirates of the Caribbean!
I was the sole autism adviser and story consultant for the script and I was thrilled my efforts were recognised in the credits. I will never forget that night, excitement tinged with horrendous anxiety. I downed a bottle of wine, knowing the enormity of the night. This needed to raise awareness appropriately amongst the mainstream audience, yet please the autistic world too.
The broadcast exceeded all my expectations. After Thomas was adored by the press, the mainstream and the autistic world. Hartswood was inundated with emails from parents complimenting the accuracy of the portrayal and how it had, at last, helped raise awareness for their own children. Professionals in the field also contacted Hartswood seeking copies for teaching aids. The film received Best International Film at the Shanghai Film Festival, and due to the press reviews and public demand, came out on DVD.
I received a nominal fee for my work on the film, but did not feel entirely comfortable in profiting from it. Everything the drama achieved meant so much more. Nevertheless, it was good to be able to donate a little sum to the two major autism charities. Then I realised that Amy and her school friends could benefit too.
In Amy’s school, I noticed the playground, once lined out with hopscotch games, netball court and cycling track, had become faded to the point of being barely visible. So with some of my fee, I arranged to get the whole school playground revamped, giving the children some new motivation to play games again. Amy and her chums loved the results! It felt great, giving something back to Amy’s peers, her fantastic role models.
I’d be lying if I said it was all good, though. There was one fly which kept surfacing in the ointment. I could sense that Jamie didn’t share all of my joy. Was it too much of a public periscope on our family life? After all, we’d had years of people pointing us out in the street when Dale was tiny and one of those autism incidents happened. Why was it always in a busy street? Maybe that was it . . . I kept trying to reason – too much, just too much. We all need privacy, after all. Maybe it was too great an invasion. I tried to sort it out in my head, and I tried to ask him, but some evenings the paper was up, like some barrier between us. The sports section seemed to take an awful lot of reading. Maybe I was imagining it. We were both really tired, after all, and sometimes it was getting a bit like that scene in Gregory’s Girl. We were passing each other on the stairs having hardly seen each other some days. “Yeah, Jamie, we must catch each other. What about a chat, say breakfast, the kitchen table, tomorrow?” We were just too busy. Far too busy. I pushed it to the back of my head, with the potato peelings in the sink and the never-ending to do list. As usual, what was to be done? I got on with it. The ripples from the film were unstoppable.
With the screening of After Thomas, Dale’s neuro-typical friends, Scott, Matthew and David learned for the first time – in the five years of knowing him – of Dale’s autism. Not only were they disbelieving that Dale had autism, they were shocked, and they took some convincing that a drama had been made of his story.
Dale’s best friend Scott commented, “Nuala, Dale was a nightmare when he was a wee boy!” I know he used much stronger words to Dale, personally!
With the story in the public domain it was so reassuring that his group of his friends remained the same. In fact, they were really proud of him and impressed by all that he had achieved. Dale understood that a major part of his success was down to these superb boys being his friends in the first place. We owe them that, forever.
4
Calm Before the Storm
January 2007. Dale was thriving at college, but for one niggle. His course included an optional Higher, with the necessary adjustments: extra time and a scribe to allow for his poor fine-motor skills. His confidence was such that he decided he no longer needed a scribe for the exam, but on the big day, a despondent, frustrated Dale sloped home.
“What’s wrong, Dale?”
“Mum, the questions were meaningless. I had to guess what they were asking.”
Rather like a bilingual student, Dale had yet to master some of the subtleties of written English. Unlike them, however, he was not allowed to bring a dictionary into exams. Often, he would struggle with a word for ten minutes and more, then make a wild guess.
His worst fears materialised. He received no award for that Higher. We were advised that no individual adjustments in the exam wording could be made, but that he should appeal on the basis of his successful prelim. It seemed odd that we were left to instigate this procedure, but nonetheless we did it. Unsuccessfully.
Thankfully, he didn’t need the Higher for his overall qualification, and it neither stopped his progress nor dampened his enthusiasm. The garden was rosy indeed. On his last day at Rising Fives Nursery, Dale was so present-laden he could barely totter through our front door! The staff was generous, and the children had made a big card. It did wonders for his self-esteem. There were even individual handmade cards from the little ones, and the parents joined the avalanche of good wishes. Dale blossomed. He was a team member, his value recognised. All this, and he had his NC qualification to boot!
His next hurdle was to progress to HNC level, in order to qualify him for work in mainstream nurseries. The interview process geared up, and we waited for Dale’s call . . . and waited. In the final weeks of the session, his mood changed. He grew withdrawn and depressed. It was difficult to open up the conversation. When I did, I was unprepared for his bombshell.
“Mum, one of the tutors has been talking to me for a while, suggesting that I shouldn’t apply for the HNC course. It feels like I’m being picked on.”
I needed to know more. I opened my mouth, already formed with the name “Dale”, ready to ask, but I wasn’t the first.
“Dale, why do you feel you’re being picked on? Dale, is it your clothes? Is it that shirt? Is it something on the shirt? I don’t think that’s okay.”
It could have been funny, but it wasn’t. I needed to hear Dale, and this wasn’t the time for an Amy interrogation.
“Amy, have you seen The Punter this week? It’s on the table.”
“I’ll have to see it, but, Nuala, Dale, what was she picking? Nuala, what . . .”
Thank God I’d that new horse book at hand. Thank God. I don’t think I’d ever have heard her brother. This was important. I scurried Amy off to the kitchen.
Dale was still there, waiting, head down. “She says I have come as far as I can at NC.”
It transpired that the tutor had interrupted a lecture, pulling Dale out into the corridor for a chat. What Dale was hearing was that the HNC would give him problems with self-confidence because of all the extra support he required! She suggested that he would be well advised to seek a position as a support worker in a private nursery, as he’d cope better with that level of responsibility. Poor Dale accepted her judgements. I was pleased that he was opening up, but I certainly wasn’t taking it!
Who had done what he had? Who had his knowledge, his experience? I reminded him of exactly where he had started, and told him that no one was about to take away his future! I ensured he would receive more comprehensive learning support, assisted by Prospects’ Students Support
Services. To try to resolve matters, we met with the college staff, and were reassured to hear Mr Ross, from the Learning Support Department, encourage Dale to apply for the HNC, with all the backup and adjustments he needed. It was going swimmingly until . . . there was a loud knock! Enter that same tutor who had been speaking to Dale! Having apologised for her interruption, she began to put in what she termed her “tuppence worth”. That “tuppence worth” was a repetition of her talk to Dale!
We gave her our time, and our unanimous thumbs down! Dale sat, calm and composed throughout. He was by no means the least able in his class, and he knew it! Why then was he the only one not offered an interview? I was relieved when she left. Mr Ross gave Dale a copy of the HNC placement manual, saying, “It’s very confusing and difficult to decipher exactly what you’re meant to be doing, but I am sure you will get help.”
It was easy enough to encourage Dale that he was on track, and yet, when he came home that day: “Mum, when you left, the tutor spoke to me again and gave me the same talk, but I remembered what you told me and just ignored her, but it angers me. I think this is all because of my autism.”
Naturally, despite our efforts, he was still unsure whether or not to apply for the course. We sought help from Anna Williamson, who informed the college of her role and how Prospects would assist. The situation being precarious, she attended Dale’s informal interview, recording: “I met with Dale before the interview, and he was very anxious [. . .] considering some of the issues [. . .] arising, regarding staff commenting on his suitability for the course.”
She explained he could be helped by a student support practitioner, and helpfully outlined all the support available – on the wording of assignments, getting notes before classes, obtaining software and equipment, and he would have help with his presentation skills. Further, he would have additional support on placement, and autism awareness training would be made available from Prospects, should staff there wish it.
Anna’s summary of their meeting showed a return to confidence for Dale, but it included a chilling note. She observed that, though Dale knew he had not managed sufficient detail in his written answers: “I wonder whether this had been raised with Dale earlier on in the placement . . . He would benefit from regular feedback and encouragement, moreover from these sorts of problems [might be avoided if] . . . highlighted earlier on.”
Indeed! Anna put her promises into action, ensuring that Dale received Disabled Student’s Allowance. The support plan in place, we looked forward to a happy summer break. There were three big events in the offing:
The first was the publication of my book, A Friend Like Henry.
The writing had not been easy. The emotional journey was draining and challenging. It took everything, but I was determined – and that was just the storyline!
I had no idea how to use a computer, and everything I know now was learned on that job. Thankfully, Jamie helped me, but I felt guilty knowing that I tested his patience. He was Mr Technology, a keyboard whizz. He tried but became increasingly frustrated by my ineptitude. We argued. We argued more. Cracks in our relationship were certainly appearing. I started to acknowledge painful aspects of our life together that I had never faced, going right back to the time of Dale’s birth. I needed him to get me and my book where we needed to be. I had years to expose, people to reach. I plugged away. We needed to pull together. We couldn’t. Every page was hell. No, every comma, every full stop, was hell. Somehow, I don’t know how, it was there, in print, in covers on shelves. We made it. Just.
You cannot imagine how I felt, seeing my book in print. Or perhaps you can.
Almost immediately, the response overwhelmed me. It became a Sunday Times bestseller and was celebrated by the mainstream, autistic and dog lovers’ worlds alike. I received so many letters and emails. Telling Dale’s story had made the difference we had hoped. And it was worth every curse over every comma.
The next few weeks were a whirl of promotions, conferences, signings, TV appearances and talks. Professionals in the field told us the book had changed their practice. Quiet Dale proved a natural with an audience, his personality and humour shone out. As the praise and empathy poured in, I felt life couldn’t get much better.
Our second big event was an opportunity for Dale to broaden his horizons, in more ways than one! Isobel, a local minister and family friend, put his name forward for selection for the Stavros S. Niarchos crew, part of the Tall Ships’ Youth Trust. Dale was up for it! He was selected after an interview with Inverclyde Community Learning Team. Thrilled, we pulled out all the stops to make certain he raised the £1,000 needed. Fundraising was a compulsory component of the project. Everyone rallied round, and we raised the entire sum in one night, which was also an excuse to have a rare, fun time with close family and good friends.
We had a social night at home, but not with tea and buns or cheese and wine – no, we tapped into the array of talents and the kindness around us. Our Pirate Party! Free entertainment, food and drinks, but with a catch! Everyone had to dig deep for the raffle and there was an open bucket for donations. Dale’s lifelong “social role model”, our close friend John Turner, took charge. It ran like clockwork.
Cleared of seats, the lounge grew a dance floor, while the kitchen became a proper bar area, from which guests were banned! Everyone queued to be served by John’s two teenage sons, in suitably piratical gear. There was a wee sign: Please tip the poor students. Those boys earned their chest of doubloons! Friends of ours who played in successful bands gave their time and we put their fee in Dale’s bucket – a great start. Another friend, local shopkeeper Christine Gunn, donated many high-quality prizes, and raised £500 at her store. The fundraising even made the Greenock Telegraph, which had once upon a time covered Dale’s childhood story.
On the big night, our house was a pirate’s haven: the band blared out great music and even the non-dancing Dale danced! Mid-evening, he joined the band with his guitar for an impromptu cover, earning him massive applause. The in-house comedian and compere was, of course, John, who commandeered the mike like a professional. His lovely assistant was my dear friend Eleanor, and between them they worked the floor!
Later, Amy donned her French chef’s apron with matching hat and I silenced the room. She announced, “Ladies and gentlemen, the buffet is now being served. Please eat up, or the chef will be upset.”
Amy and the other kids carried trays like little waiters, doing us proud. What a night! More importantly, it raised £927.54, so his total fundraising total overran by £400. However, by donating all the money, another young crew member benefitted.
A few weeks later, we waved Dale off at Newcastle to sail to Cherbourg. Only the ship’s staff was informed of the autism, allowing them to make adjustments and ensure his safety. He was a member of the “White Watch” and had to pitch in at mealtimes, scrub decks, and participate in night duties. Everyone was expected to attempt to scale the rigging to the crow’s nest. Naturally, they were kitted out with safety harnesses, but the bold Dale reached the top without batting an eyelid! On other occasions, he climbed the masts’ steep ladders, harness-free but wearing a life vest, to unfurl sails. With one slip, he would have been in the sea. Thankfully, had that happened, he was able to swim like a fish! With his determination to succeed and to fit in, he fulfilled all that the captain required. His crew member’s assessment from the chief officer confirmed: “Dale is a key member of the watch, who is always on hand to help and has been up for all the challenges that a sail training vessel provides.”
He was scored well for effort, his attitude to supervision, and for his reactions under pressure he was deemed Satisfactory. He was similarly valued as a team worker and praised for his communication, learning, problem-solving and team management. What a report for anyone, let alone someone with all his challenges! And what a boost to his confidence.
Dale brought back an interesting tale from his voyage. Prior to the trip, I had donated a signed copy of my book for the raffle w
hich was won by a young crew member. The girl read it in her time off, and was pleasantly shocked to discover how severe Dale’s autism had been. She was astounded that Dale was one of the crew. The significance of that was not lost on any of us.
The third exciting event for our family was the arrival of our long-awaited golden retriever puppy. Wee Henry had, by now, enjoyed two years of being top dog, but we felt the need to have a second dog in the household, and knew that the canine company would be good for Henry too.
We called the newcomer Thomas, not only after the train, in line with our Henrys, but also after the drama of our story. He was cute, with such a winning face, but from day one we discovered he was quite a different character! Unlike his dependable train namesake, this Thomas couldn’t be trusted! My belief is that when selecting a dog for a child with autism, puppies should be avoided, and Thomas was proof in a fur coat. A fully mature dog with a suitable temperament should be introduced to the child, to fit the family’s life. This reduces all the hassle and avoids worrying, unpredictable puppy behaviours. After the publication of my book, many parents contacted me, having bought a puppy. Invariably it would prove disastrous, and many puppies were returned to their breeders. Thomas educated me on how difficult a puppy can be, but we adored him. While he became the most affectionate golden retriever I have ever known, he was also the most troublesome, badly behaved dog in the world!
As ever, the first problem was house training. As both Henrys had mastered this within a couple of weeks, we had high hopes, but we endured six long months of intensive toilet training before Thomas’s penny dropped. Then there was an added nightmare.
Thomas had an irritable bowel and we were on tenterhooks whenever he ate. What went in came out at high velocity less than an hour later. Many veterinary visits, innumerable stool samples, and trial and error dietary changes later, Nigel confirmed that Thomas had rare metabolic protein intolerance. He needed a specialised, and very expensive, dry food to manage his condition. Thankfully, for the atmosphere in our home and for what remained of our carpets, the food worked. Worth every penny!
All Because of Henry Page 5