All Because of Henry

by Nuala Gardner

  On arrival, I popped Katy in her buggy. Though wide awake, she transferred easily. We joined a large, bubbly tour group and tailed into a dark room, projected all around with loch pictures. It was like being in the middle of the water. The story began, and my heart sank.

  There were roars and simulated monster screeches, there was thunder and lightning. The sound effects were at the legal maxima and the tension palpable as we waited for Nessie. Amy was terrified! I couldn’t see or hear Katy and I became desperate to bale out. I had no wish to return a traumatised infant to her mother! Moments later, the sound faded to an eerie silence and the lights returned us to daylight. Thank God! Katy had fallen asleep. Indeed, she slept deeply throughout and we were able to see the entire exhibition, uninterrupted. Yet that noise could have wakened the dead.

  Outdoors at last, in still-fantastic weather. While Katy slept, we lunched alfresco. In the midst of a bedlam of hilarity and playing kids, Amy joined in a game of chase, and Dale headed for a stroll while I saw to Katy. After all, she hadn’t eaten or drunk for five hours, and with the long car journey back ahead, I wasn’t willing to leave her any longer. I picked her up gently, but I needed to stimulate her to waken. I tickled her feet, removed her cardigan, and then and only then she gave a big hello yawn and stretched as long as her tiny body allowed.

  Thankfully, Katy wasn’t the least upset by her awakening. I changed her nappy so she could enjoy her overdue bottle. Bizarrely, she wasn’t interested in it. I had plenty midwifery experience, encouraging legions of reluctant feeders, but this one was adamant. Jamie drove us back to the hotel so I could take her to the quiet cool of our room. I was determined to return with a happy baby. At last, she fed. As she did, I had a terrible sense of déjà-vu.

  Her beautiful brown eyes stared right through me, taking me back to a haunted place, with my own Dale as a baby. I couldn’t deny my thoughts: for the third time in my life, I was cradling an infant in my family . . . another ticking bomb. For me, it wasn’t a matter of if Katy’s autism would explode, just when.

  On our return, Laura was eager to know how we had managed. Naturally, I assured her, all was well. This wasn’t the time to worry my cousin. She would have a sore path ahead, waiting and watching, but the mother and nurse in me knew. It would have been cruelly irresponsible to mention anything then. There is a time for recognition and acceptance. It cannot be imposed.

  Two years on, that time had come. Laura talked to me of her suspicions. As she was voicing the word “autism”, I told her of my own concerns. She had read my book, and reread it, just before my call. She understood the enormity of her thinking, but was grateful to have help. Katy’s few words were termed echolalic by the health visitor and, perplexed, Laura Googled what that meant. Echolalic, yes, echoing words, repeating them instead of answering. “Are you cold, Katy?” batted back with the uncomprehending reply, “Are you cold, Katy?” again and again. It was all too familiar. Every reference was to autism; indeed, all Katy’s emerging traits fitted that very template.

  The wee one displayed similar behaviours to Dale, but one feature worried me particularly. In order to cope with a hostile environment, deal with body awareness problems (proprioception), difficulties with spatial awareness and all round sensory chaos, Katy, like so many others, had begun to tiptoe walk. Both my children had done this, and Dale’s pattern was so ingrained that it required years of intervention. Yet, this chilled me, because it was the most extreme I had known.

  Katy’s autism was consuming her days; she had no peers to play with, and because Laura and her husband worked long and anti-social hours, she enjoyed no significant intervention. Nothing could break into her autistic world. She adapted, moving everywhere, indoors and out, like a ballerina, on her tiptoes. A dance teacher once explained that no child was allowed to perform a pointe until they were six, as it can seriously damage the Achilles tendon, and the ankle muscles. Katy was just two.

  Worse, she walked backwards! Laura was exasperated, tried everything, but even shod, she still reverse-manoeuvred, on her toes. Early intervention would help. Many children benefit from occupational health and physiotherapy. Even so, for some, despite all the measures, the contracture of the Achilles tendon needs more radical treatment. Indeed, unaddressed, mobility will be reduced in the long term. Surgery, and surprisingly perhaps, even medically supervised Botox injections, have been used to try to help sufferers regain a normal walking posture. Not a rosy outlook. Fortunately, it wasn’t all bad news.

  Katy had shown a preference for the colour red, in tune with her obsession – Mickey Mouse’s shorts! The time had come. I urged Laura to seek an immediate referral to an Educational Psychologist, to begin the journey to an early diagnosis.

  I assured Laura, that with early intervention, Katy would improve. I would help her negotiate the system to ensure her child would receive that all-important, condition-specific education. My present was in the post the very next day. Like the cuddly pack, it was no ordinary gift. In A Friend Like Henry, Dale described how Thomas the Tank Engine characters’ and Henry’s facial expressions were easier for him to understand than human faces. He was not alone. Recent work with children with ASD aged four to eight has enabled the development of an autism-specific DVD, The Transporters. The eight toy vehicles have human faces, individual personalities and functions. Storylines are simple and teach fifteen basic emotions. Research shows that ASD children using Transporters can catch up with their non-autistic peers in their understanding of facial expressions and emotions. I knew it could help Katy when I read a parent’s review: “After only watching three or so episodes, my son knew the names of every character [ . . . ] ‘Look, Daddy’s happy’ [ . . . ] It’s a bit like someone has flicked a switch in his head.”{2} I hoped that my gift of The Transporters would help Katy as the research has shown.

  With the summer ahead and my programme in good shape, I just needed to find a family! Okay, I needed funding to really make things complete, but despite that – yes, despite that – this was moving and taking real shape. I lived it, I dreamed it. I spent hours on the computer, or with sheets of paper at my kitchen table, working, modifying it, changing it. I wish someone had funded me. I really wished that, but it didn’t stop me. This was the dog on my shoulder . . . and it wasn’t going away! So, in the absence of funds, where was the family, or more importantly, the right family? While many had contacted me, none were in the position to pilot the work. Just as I was about to give up, Jim Taylor emailed, asking if he could pass my number to a mum and teacher called Beth. She was interested in getting a dog for her nine-year-old severely autistic son, Keir. A few days later, my phone rang.

  As we talked, we clicked. I asked why she wanted to explore getting a dog. She was desperate. Despite all her best attempts, avenue after avenue was being blocked. She needed to make a change and was prepared to look at something that the conventional paths didn’t offer. Perhaps, her personal final straw came when an involved professional, who should have known better, described her son as showing no progress. Oddly, with such a damning comment, the professional was unable to offer any stalemate-breaking suggestions. No one should be treated like that, parent or child. Fortunately, Beth was not prepared to accept that callow remark. Nor was I.

  Keir participated in many activities, but being an only child, he needed company. Beth knew meaningful interaction would improve his life quality. His dog experience was with a family friend’s Dalmatian and he showed an interest. Clearly, a puppy was inappropriate, and not any dog would do. Keir needed a dog with the same qualities and maturity as an assistance dog, the qualities Henry had had. I reassured Beth her call was timely; my programme was ready. We talked for ages. We agreed to try out Keir with my system; it would do no harm. All going well, I would help Beth source a suitable dog. But first we needed to be certain that Keir would benefit from having a dog at all.

  I went through my checklist to tailor Keir’s resources to his autism and his intellectual level. While his autism w
as severe, he had a small vocabulary, and though some phrases were echolalic, more usually, they were in context. Keir’s sweet voice had different pitches and tones, and it was difficult for an adult to tune in, so it was easy to miss the extent to which he was already communicating.

  Now that I had a sense of this, I asked Beth if he had a colour preference. She confirmed that though he was not wild about any colour, he had a way of gravitating towards a certain, bright Percy green! That answered my next question! Children with ASD can adopt more than one obsession at a time and replace one obsession with another, so we agreed to include the ever-useful Thomas and his cohorts in our plans. Beth was far from oblivious to her son’s autism, recognising in detail how it affected him, but significantly, every day she valued that endearing, cheeky personality. Keir was Keir, not an autistic boy, but a lad with autism. That’s a distinction well worth making.

  He didn’t look at adults’ faces when verbalising, and additionally, he used PECS so his comprehension was variable but encouraging. Beth hoped a dog might help reduce his ritualistic behaviours, which dominated his life (and the family’s!) daily, especially outdoors.

  A few days later I sent the initial, Red Stage folder to familiarise Keir with a dog’s needs. The colouring-in pictures showed a dog wearing a green collar with matching lead. Beth photocopied them and sent them to Keir’s wonderful teacher, who shared the activities with him and his peers. Keir’s parents knew how to “dogify” him with DVDs and books, a happy process.

  Six weeks later it was Yellow Stage time, preparing Keir for a visit from Dale, Henry and me. Being strangers, I sent through a social story with pictures of us, explaining we would be visiting. To help Keir understand our visit was imminent, I sent through Henry’s furry duck. This allowed him to play with his parents, by throwing it. He was taught it belonged to Henry. Keir would give Henry his duck on arrival.

  We set off with Henry, in all his finery. His green collar had a picture of Dale in the key ring fob, to remind Keir that Henry belonged to Dale. The harness had “Keir’s” green lead in a loop handle and I put on a little Thomas on the other hook. Such was the enormity of what we were trying to achieve that Keir’s teacher gave up her Saturday to be there.

  When we arrived, Dale let Henry run around and explore his new environment. Keir was clearly excited meeting Henry, and gave little attention to the new humans. When Henry stood still, Keir smiled. He grabbed his bright green lead. Then Beth remembered, “Keir, go fetch Henry’s duck.”

  He ran into the kitchen, retrieved the duck, which Henry obligingly wedged in his mouth and excitedly carried to the lounge. Keir followed Henry throughout, often trying to interact, even though the dog never stood still! Because there was enough space and the duck was safe to throw, I let Keir hear and see the command: Henry, fetch! Henry returned, and dropped his toy at my feet for another go. The third time, Keir took the duck and copied, despite having difficulty mastering the throw. Several little throws later, I noticed he was waiting for the dog’s attention, ensuring he “sat” before he was prepared to throw. He gave no verbal command, but shrieked with laughter, watching the fetch and return. Both had mastered the game.

  Throughout, Keir showed little curiosity about us, but his Henry-fixation continued into the garden. They ran around together and he held his lead tightly. I demonstrated “sit”, and Beth noticed thereafter that Keir repeated the word to Henry. He was intrigued that the dog obeyed him. Several times, he pushed the patient Henry’s back-end down, but quickly he learned that he had to command and Henry was to comply.

  It was thrilling to see another child learn through a dog as Dale had, seventeen years earlier. Communication works! Keir was comfortable communicating with the dog because Henry gave him no verbal or social pressure. We witnessed how children with autism are able to understand and begin to verbalise using a dog because of the consistent, non-threatening sharing the animal allows. The dog enables the child to engage and interact without the human’s social baggage. There are no complex facial expressions or language to bombard and intimidate. I was beginning to recognise the piece of the jigsaw I had sensed was missing since Dale’s childhood.

  What was the dog doing right that we neuro-typicals were not?

  Keir was so comfortable, connecting and interacting with Henry. Several times he attempted to sit astride the dog’s back. Henry stayed in the “down” position, unfazed and tolerant. A bond had been created. Although Keir’s eye contact was initially fleeting, his teacher noticed as the game progressed that with Henry it improved. He looked directly at his face. The social timing was correct for Henry alone. History was repeating itself.

  Keir had a great interest in “his” lead, so much so that he tried to remove it, repeating, “I want it . . . I want it.”

  This was a definite request. Dale obliged by removing the lead and Keir showed him his approval, displaying a big beam while he wrapped the entire lead around his right wrist.

  As anticipated, Henry made a large deposit in the middle of the garden. Thankfully I had covered the dog’s toileting needs in the resources! Keir accepted the novelty, while Dale did the needful.

  The only negative response we observed was when an excited Henry let out an almighty bark. Clearly, that bothered Keir, but with reassurance he accepted that Henry was his “friend” and calmly played on.

  As I had done once with Dale, all interaction for Keir was directed initially through Henry. We didn’t force him, and allowed his rituals to emerge. He had to know that what we were doing was on his terms; like all good practice, it was child-centred. Soon, Keir could be diverted to what we wanted, through Henry. This approach had worked well with Dale, and the autism assistance dog charities have found similar patterns.

  Bit by bit, Keir seemed to grasp that Henry was barking with excitement, a kind of dog-speak, and this very aurally sensitive boy began to tolerate the sound. Things were going well, the weather was favourable, and so we tried a walk. Dale used his black lead attached to Henry’s collar, so he was in control, while Keir held his, which was unhooked to full length. Clearly, he wanted it that way.

  Keir’s teacher commented on how much she liked my approaches. The Red Stage resources complemented his schoolwork. Although things were working out, we assumed nothing. Beth showed Keir the PECS park symbol. That entailed a left turn, but he was heading right, in the direction of his beach walk. We changed communication tack and set off to the shore.

  Dale remained on Henry’s right, Keir on his left, so he was shielded from traffic. I had used this safety barrier strategy years before with Dale. If Dale bolted, I intended to give Henry the “down, stay” command to let me catch my boy. Thankfully it was never needed, because Dale stayed with Henry throughout. When he was ten he told me he felt safer with Henry at the traffic side, and he never wanted to leave his dog when they were out. Henry made our outings more fun, and more secure. Dale believed he was in charge because he had his own blue lead. At twelve, six years on, he had become sufficiently confident to take Henry for small familiar walks.

  As we strolled, Keir’s gait was bouncy and happy. He jumped, climbed on walls, emitted the odd scream and enjoyed using his lead as a lasso. Henry didn’t bat an ear lobe. En route, Keir stripped leaves from bushes to scatter confetti-like and collected gravel to pattern on the ground. We let him be, have his rituals, as we could quite easily move him on with Henry as a prompt. Whenever Keir abandoned Henry, leaving his lead on the ground, the dog was commanded to sit and stay; we all stayed until Beth reminded him, “Keir, look . . . Henry is waiting for you.” After a few minutes, Keir returned, picked up his lead and walked.

  Approaching the kerb Dale said, “Keir, we stop, we stay. No cars, we go.”

  Just before the beach, Keir entered a familiar walled grassy area, a regular sticking point on family walks. Again, Beth used Henry. “Keir, look . . . Henry is waiting for you. He wants to go to the beach.”

  Minutes later he returned, and off we went. Next,
Beth warned me of a potential problem. Keir liked to slip behind some lampposts, and his favourite was about to appear.

  “Now, this will be interesting.”

  Keir had a tight hold of Henry’s lead. Never scared to take a risk, I said, “Let’s see what happens.”

  Keir’s lamppost! He stopped. We stood, silent; Henry sat; and Dale remained anchored. Keir made his move. Gleefully, he squeezed between the lamppost and the dyke, his precious lead clutched, firm in his right hand. We braced ourselves for his first meltdown. He paused calmly, looked at the lead in his right hand, and then effortlessly swapped the lead from right to left, as if he had done the manoeuvre many times before. We suffered a collective jaw drop, and then walked on!

  This may seem trifling to those unfamiliar with autism. Our trepidation was significant, because differentiating right from left is a significant barrier for many on the spectrum. It was for my own children. It is not unusual to see children wearing their shoes on the wrong feet, and it can take years for some to work that out. It never ceases to amaze me how complex and interesting those affected with ASD can be. Daniel Tammet, an adult with Savant syndrome and Asperger’s, can memorise long numerical sequences, learn a foreign language in a week, yet he was hindered hugely by his right/left confusion as a child.{3}