All Because of Henry

by Nuala Gardner

  Within months, Dale went from having little understanding of money to miserdom! Shopping to buy his own snacks, sweets and drinks, he became adept at finding the best deals. Often, he’d comment on prices. If I had to borrow money from him to pay the window cleaner, Dale would hound me until I repaid him. What a turnaround! For years, I had never needed to reimburse him, because he would simply forget, money had meant nothing to him.

  Having helped Dale bridge his financial issues, Joyce’s next challenge was to support the crossing between school and college life, a major transition. Some transitions are so simple – painting a classroom another colour, a changed room layout, new furniture, the arrival of a different teacher. However, major transitions like leaving the familiar secondary school to the navigation of a big, college environment had to be addressed and planned months ahead. The NAS recommendation for anyone with autism about to experience a major transition is “that the seed be sown and strategies implemented a full year before the actual event”. Accordingly, I always took simple steps early with both children to help them accept significant life events. The year before Dale went to secondary school, I drove him past Gourock High, showing him the building’s exterior and explaining that this was the big school, where he would go after Primary 7, with all his friends. Periodically, I would stop, letting Dale observe the hoards flowing out of the massive buildings at the day’s end. He commented on things like their different uniform and how many more pupils there were there. Similarly, in preparation for post-school study, at fourteen Dale enrolled in a junior car mechanic leisure course – two terms at Duncan Currie College. The course itself was the least important aspect of that. Most importantly, he became comfortable and familiar with the college. Thus, without pressure, Dale learned that this college was likely to be the next stage after school. Taking these measures was not a substitute for adequate planned transitional strategies between the school and the college staff. They happened too!

  Again, Dale was privileged, being a client of Prospects. Although Joyce’s involvement with Dale had concluded, she would ring him occasionally, checking his progress, reminding him she was always there. Furthermore, she liaised with the Prospects Students’ Support Service Officer, Anna – just in case!

  Presently, the NAS has secure funding to sustain four Prospects employment consultancy centres in the UK, in London, Manchester, Sheffield and Glasgow. It is designed to help adults with high-functioning autism and Asperger’s syndrome handle difficult situations like the transition into further education, and issues arising during college and university study. Another vital role is the provision of a unique, internationally renowned service, assisting adults with ASD secure permanent employment. Prospects was established in recognition of the wealth of talent available at the higher end of the spectrum, the “Undiscovered Workforce”. Dale and his ASD peers have so many exceptional skills, making them potentially ideal employees in certain specialist fields.

  Dale observes in great detail, identifying errors neuro-typical people might miss. Usually, people on the spectrum are blessed with an excellent memory. They tend to be conscientious and persistent, often achieving tremendous results. Someone with ASD may be better at a particular job than someone without it! My own son has exceptional insight into how children develop and learn to communicate, and his is a unique empathy for the child with a disability – yes, I believe, more than many of his non-autistic work colleagues!

  Many high on the spectrum are very intelligent and well educated. Dale and his peers are meticulous regarding routine, rules and accuracy. Generally they are reliable, hardworking, with the potential to excel in professions like accountancy, engineering and computer sciences. Others like repetitive tasks, both basic and complex, and so are capable of succeeding in areas like IT and administration. Prospects has strong evidence that people with ASD are often motivated workers, thriving in structured, well-organised workplaces. They have great attendance records, potentially lower staff turnover rates. Adults like Dale have the capacity for lengthy, undistracted task focus, following policy to the letter. Dale has never been late for work – actually, he’s always early! Merely being on time would induce too much anxiety, so just starting on time for him means . . . being late! This group could never wrongly phone in sick or take a day off. The pressure of lying would be overwhelming. Imagine a world and workforce with all these personal and business qualities! How many millions might that save employers and our economy?

  Prospects is committed to supporting the employee, and the employer. Before its establishment, the success rate for their client group in securing long-term work was dire. Even now, only 15 per cent of UK adults with autism are in full-time employment, and only 13 per cent in permanent employment in Scotland. The NAS has revealed that 51 per cent of the UK group has been unemployed without accessing state benefits. Appallingly, 10 per cent of this figure has been in this position for a decade, or more. Compounding this, 61 per cent of those out of work say they want to work, and 79 per cent of those adults in receipt of Incapacity Benefit say they would prefer to be working.{4}

  If this continues, what is the future for Amy and her peers? Despite early intervention and improved condition-specific education, is society setting up that generation to fail? Prospects is helping lessen that gap but, as always, funds are insufficient to meet needs. In the past five years, enquiries seeking their support have increased by 300 per cent. Formal referrals have doubled. The effect on the Exchequer generated by Prospects includes reduced benefit payments, income tax and national insurance contributions, accumulating to over £500,000 saved! Many of Prospects’ clients have secured permanent employment, becoming highly valued workers.

  Dale was lucky. With one-to-one support from them, Prospects ensured he suffered no discriminatory practices. We were to discover later that plenty of organisations have found legal loopholes. Blatant discrimination is still rife.

  All this was still far out on the horizon for Dale. Studying at college and working two full days a week in a mainstream nursery, Dale needed to learn good work ethics. The support he received from Prospects was vital. Thanks to Joyce, Dale had the financial security. Now he had to navigate Duncan Currie College!

  Prospects Students’ Support Service took Dale through every aspect of the transition. Step by step, Dale learned the differences between the two learning environments. They worked on details like his college rising time, his journey, lunchtime arrangements, where he sat in class and study plans. Visual timetables and support notes were formulated – again, nothing was left to chance. With Anna’s help, he met the staff at the college beforehand. As a result, one of the tutors offered a great initiative to help Dale’s confidence and one that would ensure that he was 100 per cent certain that he wanted to study in that area.

  To give him insight into college life and allow tutors to get to know him, Dale became part of a National Certificate class. The college tutor arranged for him to participate informally in the NC class for three months. I felt so hopeful for his future at college. Despite his initial anxieties, the transition was effortless and such a success that with Prospects’ help he was accepted to start on the NC course in September 2006. Dale was probably the first person with recognised severe autism to study on this course. Indeed, we suspected the first in this field, in the country.

  To ensure that he was fully prepared for college study and nursery placements, Prospects put him through an intensive, six-week Personal Development Programme. Again this was a huge commitment, highly detailed, covering many aspects of personal progression. He learned team-building and workplace health and safety, the management of his own condition and issues involved in disclosing his autism to an employer. He was made aware of equal opportunities and his rights under the DDA 1995. He was taught, in depth, workplace relations and effective communication skills.

  Dale, like many affected by ASD, would have to face many anxiety-inducing situations, therefore Prospects taught him coping strategies, so muc
h so, that I found that he managed crises better than I did! Often when I lost the plot, Dale took control, calming the situation. Everything was covered: interview success skills, how to dress, greet people, awareness of non-verbal communication – everything!

  In effect, Dale, aged eighteen, was given personal skills and work ethics that many neuro-typicals would envy. He was provided with visual handouts for reference and future revision. Prospects gave him all the strategies he needed to thrive as a successful team member. He was able to identify and manage potential problems: an unhappy parent’s complaint, staff meetings, the consequences of not passing on important information, and more.

  Lastly, Prospects gave Dale an appraisal. Unsurprisingly he had excelled: “Dale fully completed both courses and throughout his referral period, he showed that he is extremely hardworking . . . evident in the way he applied himself to all the coursework. He was punctual throughout and showed a level of maturity and consideration for others beyond his years. 16 March 2006.”

  Additionally, he received help from the College Learning Support staff. All the DDA adjustments that Dale had received at Gourock High School for exams and curricular access would be implemented by the college, or so we thought! These were: extra time in exams, a scribe and a prompt if needed. Spelling and grammar mistakes were not to be taken into account, presuming the factual content was accurate. These learning adjustments, according to the college policy, would be provided, agreed and noted within a Learning Support care plan. He would receive a copy of this.

  Throughout those two terms, Dale never did receive his copy.

  This would be my first major mistake with the college. It was less important during his NC course; he had my support and problem-solved well, but by taking my eye off the ball, there were to be devastating future consequences. Supporting and fighting Dale’s corner all those years, I had taken nothing for granted. For the first time ever, I thought I could relax! Never again! At the time, juggling a home, nursing, dealing with a second child with autism, helping other parents, I slipped up. Big mistake! Yet, so many good things were happening.

  Dale’s friends also attended the college. Scott, David and Matthew met up with him at breaks, and they would go into town together for lunch, just as they had at school. They formed a rock band, practising in a local community recording studio. A rock band in the habit of using our home to test its soundproofing! Dale continued to spend time with his “autism friends” too: Ryan, his best friend since St Anthony’s Communication Base days, and three other classmates, Frank, George and Simon. All these boys had been every bit as challenging and affected as Dale had been, but had benefited from the same condition-specific education. They too were now fully communicative, leading productive, independent lives.

  Ryan was studying engineering at an internationally renowned corporate organisation; Frank, art and design in Glasgow; George, music and production; and Simon was in sound production (he also worked voluntarily in a local radio station). All these boys accessed support from Prospects. Unsurprisingly, all thrived. Dale balanced his two very different sets of friends and, socially, he never stopped. Dale’s ASD friends were so mature. Comfortably acknowledging their autism, they called themselves The A-Team, after the TV series! They also formed a rock band but struggled to find a name – and were seriously annoyed that another band had grabbed the name Spectrum! During one practice, a delighted Dale told me that they had, at last, agreed on a name. I was forced to intervene. These lovely boys were sometimes let down subtly by their ASD.

  “Mum, we’ve decided to call ourselves Out of Depth!”

  I replied that that was interesting, but did they know the meaning of the expression? Dale replied, “No, Mum, we just liked the sound of it.”

  Diplomatically, I explained that the phrase might have negative connotations. All five were relieved. Soon they became Perfect Criminals, very rock band!

  The A-Team Saturday visits became so regular that I often left them alone whilst I shopped with Amy. The first time I did this, I remember pausing, realising that I had left my home in the hands of five autistic adults. Unlike leaving five neuro-typical teenagers, however, I could trust all the lads completely, because of their autism. Every one of them had the advantages of excellent parenting and good condition-specific education. It was not lost on me that if these five boys hadn’t had autism I would have felt differently.

  Dale’s involvement with the two bands meant he went to many rock concerts with both sets of friends. Ironically, much of their musical taste leaned towards classic rock from my era – Alice Cooper, Zebrahead, Journey and Iron Maiden – in addition to contemporary bands like Less Than Jake, Blink-182 and The Killers. I loved The Killers too, and even through my hard times, I have always enjoyed new music, and Dale has loved sharing his music with me.

  All five of these incredible, successful boys, as children, had been locked in autism, terrified, unable to communicate or cope with our world. Eighteen years on, they were all enjoying a normal quality of life, fitting in, contending with difficulties like the enormous crowds, noise and sensory overload of massive rock concerts. All five were determined to find permanent future employment. Undeniably, they are living proof of the merits of early diagnosis and the right education – intensive, expensive, but worth it! When society and governments recognise this, how different life could be.

  Dale was fortunate; he accessed extra home support for his studies from an organisation called Lead Scotland, who provided a learning support adult. Luckily, the young woman assigned, Sandra Miller, already knew Dale and was a real asset. On a weekly basis, she helped him study, plan, and present coursework and assignments properly.

  Throughout the early part of the course Dale seemed to be adjusting well. His two-day work placement was in a privately-run nursery, Rising Fives, within Moorfoot School. This was Amy’s local school and a mere ten-minute walk from home. The nursery head, Karen, and her staff really embraced Dale as a student, understanding his autism and recognising his success and progress. Secure in their support, he became an important team member.

  Out shopping one day, I met Karen, who went out of her way to tell me how well Dale had fitted in, how pleasant and hardworking he was. She was delighted to have him in tow, and even more significantly for us, the children had really bonded well with him, with his calm and patient manner. We were humbled. Dale would often create his own play resources for the children, spending hours devising them at home. Once, as part of a healthy-eating activity, he bought a selection of coloured cardboards, to let the children choose fruit cut-outs for colouring, for a fruit bowl collage. Jamie and I sat for ages, helping Dale draw and cut out. He regularly made play dough, adding food colouring and glitter. This delighted Amy, because he would make extra for her so she could make her horses. My kitchen was a bomb site, but I didn’t mind. It was a treat, just seeing Dale in his element.

  Another time, when we walked Henry at Greenock’s Battery Park, we heard a little voice shouting, “Dale! Dale!” A hundred metres away was a very excited little girl, determined to get his attention. Recognising her as one of the Moorfoot children, he gave her a big wave.

  A different time, in a local shopping mall, a shy girl was so determined to say hello, and I saw first-hand how natural he was with her, immediately kneeling down to her eye level, telling her calmly that it was nice to see her, and how he liked her lovely dress, A happy wee girl left, saying, “Bye-bye, Dale! See you at nursery.”

  Things seemed to be going so well. Dale was studying hard and had a natural understanding of child development and disability awareness. A major aspect of early years childcare is the support of children with additional support needs. Dale’s Prospects education enhanced his innate understanding; additionally, he continued to volunteer for Barnardo’s, which held regular training sessions in these areas. Barnardo’s also gave him training in delicate subjects like challenging behaviour and child protection, including sexual abuse – considerable assets in his c
ourse. During school holidays he helped at their play schemes as a volunteer support worker. The children ranging in ages from five to eighteen each had a recognised disability – undoubtedly some had autism.

  Dale’s first Barnardo’s summer play scheme was a trip to Glasgow Green. He came home, totally knackered and collapsed on the sofa.

  “Mum, please, don’t disturb me. I was partnered with a child with autism today, a bolter. The kid never stopped all day. Please! Please! Let me sleep.”

  Before his head hit the cushion I couldn’t resist! “Well, Dale, now you know how I felt. Every day.”

  Struggling to stay awake, he replied, “Mum, I don’t know how you’ve done it. It’s really hard work and . . .”

  Before he could finish, he had drifted off into a deep sleep!

  Despite his exhaustion (and big wake-up call), Dale continued to help out at other play schemes, becoming a regular volunteer support worker at Barnardo’s weekly drama group. The children had a similarly diverse range of disabilities, but thankfully for Dale, they were all under one roof. As he appeared to be coping well, in the run up to Christmas 2006 I was able to take a back seat in supporting him. This felt good. Anyway, there was an important project I had been involved in, and it was about to go public.

  When Dale’s severe autism was recognised in 1992, I wanted desperately to try to make a difference to the cause and to help other parents in my situation. I had always been heavily involved in support groups, awareness campaigns for the NAS and for Scottish Autism. It was all a great experience but my efforts never seemed to reach the masses or achieve as much as I would have liked. The work and commitment involved was overwhelming. Nevertheless, it was always worth it.