Amy, at thirteen, is halfway to becoming every bit as successful as her brother. It wouldn’t surprise me if, in the future, she were to take the computer industry by storm, like so many of her ASD peers before her. She has the added talent of being able to blend her autism with a wicked sense of humour and an affectionate personality.
Five years of continually addressing her inability to express her negative feelings appropriately has paid off. There are days when, inevitably, things don’t go her way, but the time of “I’m going to kill a horse!” is passing.
As for Dale, his job at the arts centre ended in March 2013. With a heavy heart, he gave his colleagues a card and chocolates, and he wished them all well. He had loved working with them. Determined to work again, he began to volunteer with REACH, a new autism non-profit organisation in Inverclyde, which had been founded by a local mother, Vicki McCarthy. Vicki’s teenage daughter, Kira, was diagnosed with Autistic Spectrum Condition aged four, and received that all-essential, condition-specific education, together with other intervention therapies. These measures allowed her daughter to blossom, communicate and enjoy the same quality of life that her contemporary Amy has. Both girls attend the same drama group, and one night after a sparkling show, Vicki and I were chatting. As ever, she was keen to catch up with Dale’s progress. What started as a friendly, post-performance natter between two mums was to have seriously good consequences. I heard more about her story. Through “The REACH Way” (Relationships, Education, Action, Community and Health) Vicki is striving to improve so many aspects of autism in a multi-disciplinary way. A significant part of REACH’s work is in providing employment for adults with ASD and AS who assist with the administrative dimension of their organisation. As soon as I mentioned Dale was seeking work again, Vicki arranged to meet him.
We wanted to help however we could. REACH is becoming increasingly significant for not only the Inverclyde ASD community but for the local community as a whole. It is working with Prospects and other agencies to try to secure funding for stable wages for all their workers. While there was no salaried post available to him, Dale was keen to be part of this, and he seized the opportunity to work on a voluntary basis with another adult with AS.
These are exciting times. REACH is housed in a building which has needed significant renovation to be fit for purpose. Once completed, our community will celebrate the wonderful, socially inclusive aspects of that charity in a space which will offer opportunities to children, adults and whole families alike.
Of course, REACH has a scope beyond those walls. Through it, our local cinema now offers autism-friendly screenings. There are no adverts, the lights dim just as the film commences, and there is a relaxed atmosphere which makes it possible for these families who were previously unable to see anything on the silver screen to enjoy a night out together. I am dumbstruck by Vicki’s vision and stamina. Dale may well have found his perfect vocation after all those struggles, right here on his doorstep.
For the first time in the three challenging years that pushed Dale to the limit, he is settled and content with his life again, so much so that his wee band-playing with his friends was not quite enough! He is now very involved in the Glasgow rock scene. The lads in his current band knew nothing of his autism. They simply heard him play and wanted him as part of the outfit. Dale is approaching twenty-five, and undoubtedly he has become the kind, well-adjusted, responsible and independent young man I sacrificed great chunks of my life to see mature. I’d do it all again.
Jamie is thriving, and living nearby. Whatever our problems have been, and perhaps still are, we have both moved on, and splitting up was the third best thing that ever happened in our marriage. I think we’d both agree on that. The two best things that ever happened, unquestionably, were our children, and however bad the bad times were, we have them to show for our years together. I know he’s every bit as proud of them as I am. Yes, we’ve both moved on from each other, but neither of us will ever move away from the two most precious people we could ever have created. That’s not the worst thing in the world.
My thanks could not be complete if I mentioned only the two-legged contributors to this book. From Greyfriars Bobby to dogs who sniff out cancers and find bombs, and those who rescue people who just survive in disaster zones, to those who are the eyes and ears for their humans, to our own terrible but lovely Thomas, and most of all, to the late, great Sir Henry, I raise a glass and the biggest, most succulent of bones.
Thank you!
Nuala Gardner
July 2013
In Their Own Words
The implications of literal meaning in autism, and some not so shaggy dog tales from friends.
Amy
Aged four, Amy had limited vocabulary and comprehension of language, or so I thought. At Alton Towers we waited to board the rollercoaster Oblivion, notorious for its terrifying vertical drop. I held her in my arms. It was helpfully signposted that parents could take turns at the start of the ride to allow for a “child swap”, and a staff member clarified that in a loud voice as we approached the start of the ride. Despite her already well-known complete absence of fear, she screamed and became seriously distressed. Five years later, in Disneyland Paris, she took great delight in preparing to board the Stars Wars ride: “Nuala, am I going on this ride with you?”
“Yes, you’re big enough now.”
“Oh good, Nuala. I thought you were going to swap me for a different girl to take home.”
***
In my car with her friend Shannon, when both were aged nine.
Shannon said,“We drove all the way from Belgium to Scotland.”
Amy replied, “Shannon, you’re too young to be driving!”
***
The teacher wrote on the whiteboard for the class to copy as homework: “Please write these numbers in words: 1.5, 2.5 and a continuing sequence of decimal numbers.”
Amy did that exactly . . . completing her homework on the spot.
***
Friends in the playground were telling Amy that Justin Beiber was really hot!
“Why doesn’t he take off his jumper?”
***
In The Body Shop:
“Nuala, I thought you could buy parts for your body or bodies in that shop!”
***
Teaching sex education, and stressing the importance of the issue, I asked, “Amy, do you know what ‘consent’ means?”
“Yes, Nuala, it means you have to get them to fill in a form.
***
Having discovered that her school bag was broken, I blurt out, “Oh, Amy, the zip on your bag is gone!”
“No, Nuala, it’s still there!”
***
A teacher asked her pupil to go back to the classroom and bring her back the green cardigan. When the pupil returned, he brought a green basket. He did not know what a cardigan was, so he looked for the nearest green object.
***
Another teacher exhorts an AS child to pull his socks up. Naturally, the child does exactly that! This one had dire consequences in one classroom, where the uncomprehending child was excluded for what was wrongly interpreted as insolence.
***
When Amy was aged eleven, I explained to her that she had been a test-tube baby and as an embryo, she had been in a freezer for three months.
“Nuala, that’s why I don’t feel the cold!”
***
Delayed Echolalia
The five-year-old Amy repeated a slogan she had heard a comedian use on TV. Of course, this clearly-enunciated performance happened while we were waiting in a long queue to see Santa Claus.
“Jamie, look, it’s a f**kin’ squirrel. What a f**kin’ liberty!”
Never underestimate that. A child with autism is always listening.
***
After so much chat from his sister, here’s a final, and quieter word from Dale, then aged ten.
At his Aunty Lorraine’s, he accidentally spilled some juice on the carpet. H
e approached Lorraine, anxiously, seeking her out to help him clean the mess. She emphasised, “Dale, I’m so happy you told me, which was really good.”
“Well, your face doesn’t look it!”
***
Jonathan Glass
This book has detailed Dale’s many challenges and barriers when trying to find work, but there is hope. Here is Jonathan Glass’s experience. He has a diagnosis of AS and is twenty-four years old:
Because my UCAS application for entry into the University of Glasgow was completed whilst I was still in secondary school, my university of choice knew of my Asperger’s diagnosis before joining, so I didn’t get a choice about whether to declare it or not. In August I was invited to meet my Advisor of Studies to discuss course options. She ensured I knew where the Disability Service for the University was, and gave me a point of contact to meet. She was initially helpful, and showed me where my classes were.
My University experience was mixed; ironically, the staff I got the fairest and most compassionate treatment from were lecturers in my own department, Urban Studies. It was a small and close-knit learning environment. The Link workers from the National Autistic Society spent an hour a week with me after securing funding from SAAS. I was advised to quit by the Disability Service at the end of my second year, because my grades weren’t great and my attendance was slipping. There was no attempt to try to help me or to prevent me from feeling isolated. I’m glad I didn’t quit, as I gained my masters degree with an Honours entitlement, after four years of hard work. My friends knew of my disability, because I got extra time in my exams, and they were supportive. In fact, I met several of them, thanks to my disability, as we met during that extra time before the exams!
After graduating, I started a postgrad at another university, which I hated. The course description was different from the course content, and there was little or no support for me. With no funding for an NAS worker, and little in the way of a fixed contact in the department, I found that staff were actually bordering on rude when I raised my concerns. I left after paying £2,000 for six months of study.
I decided to continue working part-time in retail until I could find a full-time job in my own specialism. Several months had passed and I was getting desperate. I was even considering going into a retail job full-time, just to have something to do with my days. I had kept a close eye on various railway websites, as I had always loved trains, and part of my degree was studying transportation policy, so I was more than qualified in that area. Luckily, a management grade role came up within a train company, doing what every autistic boy who has grown up with Thomas the Tank Engine dreams of doing – planning train timetables! I get to help plan trains, resource them with train crews, and help make a difference to improve our railways.
I was lucky. I didn’t originally get the job, but I made such an impression on the interviewers because my knowledge was “Greater than theirs”!
When my present post arose, I was offered it unconditionally. I’m getting paid a nice wage and because of my inborn attention to detail that “useless” train knowledge is now essential to my work! I know most folk with AS never get this chance, so I’m very lucky indeed.
Jonathan Glass, March 2013
“The Power of the Dog”
Amy Barclay
Over the last year, as a family we’d found ourselves virtually housebound. Our four-year-old eldest son, Noah, diagnosed with autism when he was aged two, had become increasingly difficult to manage out in public. We’d reached the point when he was too big for a conventional pushchair and he was a “bolter”.
My son has no understanding of danger, no negotiability. In fact, most of the time we were unable to engage with him at all. He couldn’t tolerate wrist straps or hand-holding. He’d begun unclipping his buggy harness at lightning speed and would run in front of traffic. We couldn’t calm him enough, or teach him how to behave safely near the roadside, and we realised that our only option was to use a wheelchair because it provided sufficient restraint to keep him safe.
Then we got our dog, Beano. We’d researched the benefits of pet therapy and read A Friend Like Henry. We knew it wasn’t just about getting a dog or even getting the right dog. It was monumentally about getting it right for Noah, preparing him before the dog arrived. Transition was the key. After all, we had come to live and breathe by visual timetables and communication aids in order to help Noah understand his environment and what to know and what to expect from his day. By fate we found Nuala, and suddenly we found in her the amazing support we needed. She sent us numerous resources, including an entire step-by-step transition programme with helpful visual aids for our son. These were developmentally appropriate tasks, which helped him understand that a dog was coming to live with us, and it would be his. Not only that, but that he would have to care for it.
Nuala worked closely with us through the entire run-up to getting Beano (and after), making sure we had every bit of support we needed and making the whole process seamless. We were excited and nervous when we introduced Noah to Beano, who at the time was a nine-month-old yellow Labrador. We had sourced him from Gun Dog World. Life for Noah was black and white; in a split second he would make a decision whether something was right or wrong. We knew that his first meeting with Beano needed to be positive for the relationship to stand any chance of success. As we walked that dog into our home for the first time, Noah’s response blew us away. An enormous, beaming smile greeted us (or rather, greeted the dog), with the words, “It’s a Beano.”
All those weeks of preparation had been invaluable. The following morning was our first attempt at going out for a walk, and we couldn’t have been more stunned at the outcome. Our little boy walked calmly and contentedly, with his hand resting on his dog’s back, from start to finish. Every time Beano stopped walking, so would Noah. He stopped at every kerbside, and did not budge until Beano was instructed to cross. Within a few outings, Noah began to abandon his previously “inseparable” comfort blanket. He began stuffing it into the shopping basket of his little brother’s pushchair, in favour of Beano’s backpack.
After a fortnight we began getting positive feedback from nursery about changes in Noah’s behaviour. He’d become tactile. When his teachers helped him with a task, they found he would stroke the back of their hands or arms, the same way he petted Beano. As time passed we could see he was learning valuable life skills through his hours of play with his dog.
It was evident that he was coming to understand things like turn-taking, cause and effect and such like. Through simple games like fetch, and by giving Beano commands – well, no wonder his speech and levels of engagement improved. My son was transferring these newfound skills into other aspects of his life. As well as that, he became able to play with his little brother much better than he’d ever done before. He was starting to understand sharing and patience in small amounts, where previously he’d struggled with those concepts.
Personal care instantly became easier. If Beano was having his hair brushed, Noah would tolerate having his brushed too. Every time my son’s teeth were brushed, Beano’s were done too. In fact, Noah would sing his version of our household’s teeth-brushing song, to encourage his dog. As time passed, one of the most significant changes we noticed was his ability to sit still and, consequently, this made possible his newfound love of books. In the past we’d been lucky to see him stay in one place for more than thirty or forty seconds. Before his dog came into his life, Noah has been at nursery school for a year, but attended only short sessions, as he couldn’t cope with “sit-down-on-the-carpet time”.
Within a very short time, his sessions had been extended to include “carpet time” and now he’s enjoying stories and singing time with the rest of his class. We regularly find him cuddled into Beano, with a little pile of books beside them, and one by one, he will read his version of the stories to his furry friend. The success of this friendship has far exceeded all of our expectations, in a way we could never have imagined.
All of a sudden, we’ve been given the tools to do what we’ve been watching other families do (and take for granted) for years. We are making huge steps towards improving Noah’s chances of coping with early education and life, and simply becoming the happy little boy that we want to see. We will be eternally grateful to Nuala and Blair Cochrane of DATA, and all the others who have helped us, because we were at a crunch point, where life could have become really difficult. Instead, Noah (as an individual) and we (as a family) are thriving. We look at the bond he has with his dog and it melts our hearts.
And how long has Beano been with us as I write? Sixteen weeks! We are looking forward to watching them grow together.
Amy Barclay, Noah’s Mum
March 2013
Endnotes
Preface
1. NAS Communication magazine. 2005.
Chapter 1
1. The DDA 1995 was reviewed and is now the Equality Act 2010, which is still in place at the time of writing.
Chapter 2
1. Quote from Scottish Executive parents manual Next Steps.
2. Quote from NAS Communication magazine. Summer 2006.
3. In April 2007 NAS launched a report called “Missing Out”. It revealed children with autism from black, minority and ethnic communities experienced “double discrimination”, meaning that their disability and their ethnicity isolates and excludes them from having the right education to allow them to reach their full potential, as any other child. The report states, “24% of BME children with autism were excluded from school.” Parents from BME communities were significantly less satisfied with their child’s academic and social progress compared to their white British counterparts. The report recommended that “schools must address bullying on the basis of race, disability within anti-bullying procedures” and “all professionals working with children with autism from BME communities should receive training in autism and cultural awareness.” (http://www.autism.org.uk)
All Because of Henry Page 25