“Er, that’s lovely. Well done, Amy.”
And the parent shuffled off, shooting me an over-the-shoulder look. Written all over it was Go get a life, wummin!
Never mind, I knew what I meant, and at home, her dad did too. Most importantly of all, Amy knew! That visual reward and the positive reinforcement of praise worked.
After school, there were regular, shared times in the Five’s homes and gardens. Occasionally I would take the friends out, as a gesture of appreciation. Although their parents protested that this was unnecessary, it was a pleasure. Without her friends, Amy’s quality of life and progress at school would have been very different. Even in that very first year, that was apparent.
One day, as the school bell rang, I saw Amy, holding Shannon’s hand, with Regan following. Amy’s happiness was obvious – Shannon was being hugged and kissed to bits. Clearly, however, Shannon was uncomfortable with the exuberance of Amy’s affection! As I intervened, Amy’s reply was unforgettable: “Nuala, it’s okay. I know what you mean. I don’t want people to think that Shannon and me are gay!”
Trying to keep my belly laugh under wraps, I asked. “Amy, what does gay mean?”
“Nuala! Do you not know? Simon in my class told us. It’s when a man loves a man, and a woman loves a woman, and they can get married as well. Simon is good at telling you things.”
Aye, so he was!
“Amy, everyone is different and that’s okay!”
Just then, Shannon and Regan grabbed Amy’s hands and shouted out, “Come on, Amy! Giddy up! Let’s get to Funworld!”
Of all the challenges and social barriers a child with ASD has to face in life, from a parental perspective, perhaps the most heartbreaking is to witness your child’s social isolation, day after day after day. My children have been lucky, but many parents have to cope when their child has been unable to establish that most basic of human needs, friendship. Never underestimate it. For those affected by autism, having a friend is every bit as important as it is to anyone else, yet it is possibly the most complex challenge of all. Friendship, after all, imparts social belonging and is inclusive in a real and meaningful way. Which of us could live without our friends?
Both my children have often told me that they hated the isolation when they couldn’t engage or integrate socially. Both have told me that in an attempt to cope, they would withdraw more into their autistic world, immersing themselves further into their obsessions as a substitute for company. I repeat: never underestimate the need of anyone, anywhere on the spectrum, for friendship. It may be their greatest aspiration and, for some, it is underscored by the harrowing knowledge that they are different. One child with Asperger’s asked his parents if there was a shop called Friends Are Us where they could take him to buy a friend. How much we neuro-typicals take for granted!
In 2010 the NAS (National Autistic Society) Our Impact Report revealed that over 40 per cent of children with autism have no friends. Unsurprisingly, these socially vulnerable children and adults make easy targets for bullying. Some traumatised children have needed to move from mainstream to additional support needs (special) schools, in order to ensure they are protected from further bullying.{3} Amy was one of the lucky ones. Her teachers at Moorfoot knew how to work with her autism in a positive way. Small but constructive adjustments made a huge difference. The award of a horse sticker instead of a star, being allowed to draw horses in her busy book on completion of classwork or work well done, all these little things add up. Amy was following a similar pathway to Dale, except Dale’s educational motivators had been trains and dogs.
Together with the positive use of her equine obsession, Amy benefitted from an excellent Individual Education Plan (IEP), with realistic and achievable objectives. Some of the adjustments were so simple but essential, where and with whom Amy would sit in the classroom, for example. The right seating position allowed the teacher to prompt Amy and minimise distractions. This showed a real awareness of her sensory integration issues. This is a particularly important issue for almost everyone on the spectrum, and it needs to be unpacked here.
Practitioners now understand how sensory stimulus can overload an environment. Sensory issues alone can have a direct affect on the person’s ability to cope with situations, and it can completely undermine their receptiveness to learning. Like many others, Amy had numerous sensory difficulties. Her senses could be heightened or reduced with a marked effect on her overall perception. As a child, Dale had also had many such problems, but his difficulties were harder to discern because he was unable to tell me. Amy could tell me, and it shocked me to discover that her sensory difficulties were greater and more varied than Dale’s had ever been. It seems likely that in her greater awareness of her world, Amy was more vulnerable to this particular shaft from Hell.
Consider the sensory stimulus in a classroom: the glare of strip lights, the wall displays of paintings and projects, all the colours and endless information. We absorb about 70 per cent of our information from our environment visually. With all the other energy involved, is it any wonder the child with autism has problems deciphering? Think of the sounds and smells of a classroom, the feel of the seats and desks! No wonder they become overwhelmed. Add people into the mix. Think about the chattering and echoing and how that distorts the auditory ability to process verbal instructions. Have you any idea what a fire alarm does to someone with ASD?
Even to this day Amy still struggles, particularly with food, let alone with the environment in which she is eating. For example, one day not too long ago, as I was crunching away at my cereal, she said, “Nuala, eat your breakfast in another room. The noise hurts my ears and the look and smell of it makes me feel sick.”
Compounding this problem is the sufferer’s differing spatial awareness. Amy often uses her peripheral vision and she appears to squint. Seeing this, you might sometimes conclude she wasn’t paying attention. In a busy mainstream school overflowing with people, is it any surprise that many children with inadequate or no support struggle? How many are wrongly excluded from the life of the class because their problems have been misunderstood or not recognised?
Something else which amazed me about Amy’s autism was that her obsession with horses was even fiercer than any of Dale’s childhood obsessions. Unbelievable! Even Dale’s ten-year affair with Thomas the Tank Engine wasn’t as intense as this. Already as a six-year-old, Amy was able to manipulate anything and everything to bring horses into the equation, and she honed these skills throughout her primary years! From nursery days onward, Jamie had been in the habit of taking her to the local shop every Saturday to buy a Daily Record. He thought the paper was for him. One windy Saturday, in the summer before she started school, he was to discover otherwise. As her dad handed over the paper to be scanned, a full-blast Amy blurted out, “Jamie! Remember and keep The Punter for me!”
“The Punter” was the name of the paper’s horse racing section. Amy would make collages from the few pictures of horses that were in it, but then she would create horses from anything – leaves from a tree, food on her plate! As a bold seven-year-old, she even managed to capture a bricklayer who was working in our garden.
“Rab, do you have any spare cement I could use?”
With this and other materials so artfully gained, Amy built Brickie the Horse! Rab left a gap at the back of a couple of bricks, allowing Amy to complete her sculpture with the final flourish – a tail robbed from a nearby bush! Brickie was duly painted to her exact specifications and stood in our patio for three full years (with regular replacement tails, naturally!).
Using my children’s obsessions creatively has always worked. It works every bit as well in professional settings, as good practitioners know. When Amy displayed a new or different type of behaviour where the underlying reason for it and for her resultant distress was unclear, I had to figure out the trigger, Amy couldn’t express what was wrong. This was the iceberg effect. With the iceberg effect I had to decipher if there were any sudden changes a
t school or in her home environment. Because the behaviour was abrupt and new, I had to consider if there was an underlying medical reason. A child with autism has difficulty interpreting pain and, undetected, this can cause serious problems.
Amy’s obsession with horses was already extreme, at both school and home, but that had its uses. As every mum knows, the beginning of school is a time of scraped knees, bugs and illnesses. Amy certainly had her fair share of all that. For more than a week in the May of that first year, she was unsettled and unhappy, repeatedly telling me that she had a sore eye. As a nurse, I could see that her eyes were fine. Nevertheless, I kept reassuring her. Eventually as the week went by, her behaviour became more erratic and challenging. She insisted her eyes were really painful. I drew on her obsession.
“Amy, how sore is your eye? Is it a walk, trot, canter or gallop sore?”
Immediately she understood, screaming at me, “Nuala! It’s a gallop! It’s galloping sore!”
Now I knew that she was in real pain. I had a doctor check out her eyes, ears and throat. To my horror, the doctor confirmed she had a severe middle ear infection. With Dale too I had been able to use the colours and numbers of his Thomas trains to help him express his pain and anxiety levels. Similarly, in his early school years he used colour charts or traffic light systems. He even had a red card when he needed to stop or take time out.
It is essential that mechanisms are put in place to allow a child to communicate and express their negative feelings or needs. Failing to do this is disastrous. What is a child to do? Some may scream, have tantrums, others may cry intensely and some may self-injure. I know of children and adults with ASD, experiencing the severe pain of acute appendicitis and the like, who were almost on the brink of death before their physical symptoms were recognised. Because of their autism they were able to mask their symptoms and were unable to express what was wrong. Their pain confused them. How dangerous.
Amy was lucky, and with a course of antibiotics her problems soon cleared up and before long she was back at school, enjoying summer-term life with her friends. There were terrific activities too – Brownies, drama, gymnastics – and, of course, her weekly fix of horse riding. So with Amy settling in, it was time to focus on Dale, who had an exciting agenda of his own.
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Transitions
So what was that agenda for Dale? He wanted to attend Duncan Currie College, where he would study for a National Certificate (NC) in Early Education and Childcare. Back in 1991, I would have never dreamed that would be possible. Then, of course, Henry intervened and provided Dale with a precious lifeline which helped him communicate. Dale also had the advantage of being able to tap into our useful friends’ expertise. Kenny Whylie taught Dale how to use a mobile phone. John Turner (whom Dale described as being as funny as Charlie Chaplin) enhanced Dale’s love of music, and played to his sense of humour! Without these wonderful people and more, Dale’s first seventeen years of life would have been very different. But Henry had been the best teacher of all. He alone spoke directly to his master.
That same year, 2006, Jim Taylor, the then head teacher of Struan School, explained this to us. When I found Henry for Dale and horses for Amy, we had recovered their lost jigsaw pieces, and those lost pieces can be found at any age. For anyone.{1}
We were as determined as Dale was to help him access college. When he qualified, he would have the same rights to employment as any others of his generation, but to get there, Dale had many more hurdles to overcome than most. Firstly, he had to cope with and integrate into a big college environment. Then, if he safely cleared that, there was money to understand and all the other trappings of the adult world. Our real work together was only just beginning!
Dale was eighteen when Henry died, and adulthood loomed large. I was determined that my son would attain real independence, but this was not something we could achieve alone. I must stress that he needed the many specialised skills of a variety of integrated services. In those fifteen years since his diagnosis I had come across a very extreme range of professional abilities and aptitudes. Some seemed to have almost no understanding of the implications of autism – for the individuals, for their families – and their contributions were utterly useless. Thankfully, most involved with Dale demonstrated that vital in-depth knowledge that we needed. These exceptional people had a life-changing input.
One such person was his local transitional social worker, Joyce Docherty. Her remit was to ensure that Dale received the support he needed to transfer from school to college. She would give him the toolkit to access all his state benefits so that he had an adequate income for his journey towards full financial independence. Dale had much to learn about the complexities of money, its value and how to manage finances responsibly. He was not going to be subsidised by his family forever. Working with me alone on this would have been something of an own goal. We needed the right professional, in a separate place. Joyce was a shining example of how real awareness makes all the difference.
She arranged to see Dale at home, with me there. I reassured him that it was better for him to work with Joyce independently. I explained that his autism was a legally recognised disability, and how, as an adult, he would be able to find the right professional support for himself and his sister. I knew that the day would come when he alone would be the next of kin, responsible for Amy’s well-being. He needed to know where to access support and services for both of them when we were no longer around.
Dale accepted all this and was completely comfortable meeting Joyce for that first time. Like any good practitioner, she took nothing for granted – always the best policy when supporting an adult with autism. After this successful icebreaker, she invited Dale to meet her for a coffee, so they could get to know one another better. Secure in this setting too, Joyce was able to explain in detail how she could help him access his benefits. This worked ideally for Dale, who might have felt quite differently in a busy, clinical office. Not only that, but he experienced a successful social outing, which did wonders for his self-esteem.
Alas, outwith Joyce’s control, the road to financial independence was to be bumpy and frustrating. You’d have hoped that accessing state benefits would have been made easier for Dale, given his circumstances and the support of the DDA, but it proved far more difficult than even I had feared. Dale needed what was then Incapacity Benefit, but to qualify he had to attend an assessment. This was a generic, one-size-fits-all medical to determine if Dale’s autism matched their criteria. His diagnosis of a lifelong condition meant nothing. Joyce liaised with Prospects, an autism-specific adult support service run by the NAS. They provided autism-trained support workers and advocates for clients like Dale, helping them through the process. He was accompanied at his medical by Anna Williamson and Billy Docherty of Prospects, to help speak for him and explain any of the ambiguities certain to occur. The NAS was aware of hundreds like Dale failing this medical. Truly, the failure did not lie with these young adults. The system failed them. To this day, medical assessments are carried out by doctors and nurses employed by Atos Healthcare, a private company funded by the Department of Work and Pensions.{2}
Dale’s anxieties on the day threatened to overwhelm him. He told me later that, without the advocacy of Anna and Billy, he would never have coped. Without them, it would have been three people behind a big desk, him, and no explanation whatsoever. By his own account, it was intimidating and scary. He explained the extent of his embarrassment and his demoralisation, being bombarded by demeaning and obscure questions.
Can you answer the phone?
The ever-literal Dale replied, “Yes, I can.”
I thank the heavens for Anna and Billy. Unquestionably, without them Dale would have been added to that enormous pile marked Failed. On and on for an hour, more ambiguous, unrelated questions, as some doctor’s tick-box sheet filled up. Perhaps the final straw of so many final straws that day was this:
How long have you been sick?
On Wednesday
, 10 May 2006, Dale was lucky enough to be awarded his benefit.
In 2008, the government took steps in recognising the system’s flaws, stating “no one should be written off,” and changed Incapacity Benefit to Employment Support Allowance. Allegedly, this was giving “more money to those facing barriers to work and more support to those seeking work”. A great initiative in principle, but unfortunately, this new template still doesn’t fit adults with autism; it excludes and discriminates them still more.{3}
Benefits in place, however, and with Joyce’s support – a couple of coffee meetings on – Dale had a decent income for college. Her next task was to help him get a travel card for subsidised public transport use, allowing him greater freedom, without worries about costs. Dale began to socialise more with this. He’d nip into town to browse and shop; he’d take the train to see his best friend Ryan, and he was no longer dependent on us for that twenty-mile trip.
The NAS campaign Think Differently about Autism proved timely for Dale. Launched to raise awareness of autism among the general public, one of its principal thrusts was: should an adult with ASD find themselves in a crisis situation, in public, they would have a support strategy. In partnership with The Scottish Society for Autism (now Scottish Autism) and related organisations, they launched the Autism Alert Card. Carrying this proved a godsend for Dale and his peers, providing real reassurance in potentially precarious situations – in the event of police involvement, for example. Each individual’s card is registered with a resource centre and endorsed by the police. It details the difficulties the card carrier experiences through their autism and the official dealing with the adult can contact the resource centre to access any information and support required.
Thankfully, in the five years that Dale carried his card, he never actually had to put it to the test, but simply having it made an enormous difference. As his parents we never subsidised Dale at all. He bought all his own clothes, DVDs or CDs. He paid for Henry’s food and insurance. Boy, he learned the value of money, as well as how to manage it responsibly, and quickly!
All Because of Henry Page 3