Chris Hartley started life like any other bouncing, alert and receptive new-born. He took in everything going on around him. At nine months, he was “quite quick”, already talking and starting to charge around as a toddler while developing his communication skills, according to his mother, Nicki. “He ticked all the normal boxes.” But within a few months, Chris had picked up a nasty viral infection, and developed a heavy cold and a rash. Only then did he start to withdraw from the world, all his speech had gone at around 18 months and he’d stand looking down at the ground, walking backwards and forwards, spinning a toy in his hand. Investigations started. He was referred to a specialist paediatrician a year later who visited him at home and within 20 minutes had, quite unusually, been able to diagnose him as profoundly autistic with a severe learning disability. He even started walking on his toes. Chris had changed so suddenly and left his family shell-shocked with the diagnosis.
His family enrolled him in a special educational needs (SEN) school with an autistic unit, where there was low stimulus, small classes and a high staff to pupil ratio, and where he attended till aged 16. Early on he developed a fear of going on holiday with his family but constant patience and perseverance by both parents and teachers got him used to leaving home and by the age of seven holidays were what he enjoyed most. Needless to say, his behaviour was often erratic, says Nicki. “My husband and I were constantly learning how to manage his behaviour and help him become the best person he could possibly be.” He led a good life at school. “He went through in an age-appropriate way - we wanted to help him exist in society.” Then came another blow; as a seven year-old, he had his first epileptic seizure, although medication now helps control the condition that has reoccurred roughly every three or four years since.
He’s remains non-verbal and has never been able to write, but the school introduced him to a system allowing people with little or no communication abilities to communicate using pictures. Every time he wanted to use the toilet, for instance, he would show his teacher an appropriate picture card. Everything changed when he moved on at 16 to the autistic unit of a special needs sixth form college. At the end of three years Chris was in a terrible place. The staff had tried but were simply unqualified to support him properly and did not know how to communicate with him. He started hitting and biting staff and just did not want to be there. In an attempt to calm him down, staff decided to give him whatever he wanted including feeding him all the time. There was no structure in place, no pictorial timelines to show him what he was doing that day, not even a picture card he could use to indicate his need of a toilet.
He began to need prompting to do things he had previously done at school like hanging up his coat. All the students in his group had extreme autism and many shared his frustration over being unable to communicate. In his third and final year at the college he started self-harming and, according to his mother, Nicki: “Few or no pledges to us by the college to improve his care were ever met. It was a terrible, terrible time.” Then Hedleys College came to the rescue when Chris was preparing to transfer from child to adult care provision. “He was given an amazing new social care worker, who still works with him,” says Nicki. The family picked out Hedleys with its high reputation as the best place for Chris’s next placement, and despite the fact the college was independent and expensive, the social worker persuaded the local authority to fund the move. Chris’s first meeting with his future tutor from Hedleys, Sarah Hetherington, was on a visit to assess his suitability to attend her college. He was in a very poor mental state, his mother explains. One time he was found in tears at one end of a long corridor in the sixth form college. “He was switching a light on and off. He had somehow ripped his mouth and was still biting it with frustration. It was just not nice.”
On first meeting Sarah, Nicki thought she seemed timid and quiet - “I didn’t think she’d be able to take Chris on. During his first day at Hedleys, I told her to ring me to pick him up if it got too much. I could see he’d soon be heading towards a secure unit. But never judge a book by its cover. Sarah just listened and listened. She didn’t ring. And, amazingly, within his first nine weeks of assessment in college, Chris actually started to want to go to college!” It could not have been more different to his first term in the sixth form college, says Nicki. “In the car he would go for me, hit his head against the window and bite himself - he didn’t want to be there.” Over the next two years, Nicki marvelled at what Sarah was achieving with Chris. “She’s amazing - there’s something very special about that girl. She has a silent confidence in her ability - I never thought Chris would be behaving like he is now; he’s become a very confident young man who now enjoys being in our world.”
Sarah’s explanation for the change is simple: it’s down to communication - for Chris and others like him to be able to communicate their wants and needs to people who understand them. As soon as people do that, and understand that Chris thrives on structure and lots of routine, they’ll see a decrease in so many behaviours. Pre-Covid, Chris started working towards a Duke of Edinburgh’s award. He now communicates calmly, using PECS and more recently using pictures on his iPad to communicate. “He’s also started cooking - he’s a totally different person,” says Nicki. “He’ll never be able to get a job and Iive by himself but Sarah has given him the tools to live independently and lead a good, fulfilling life. Chris used to be a little boy in a young man’s body but now he’s a young man himself. He’s had so many anxieties in being in our world and Sarah has taken them all away.” Chris’s independence has been boosted by familiarising him with items like the college’s system of green red boards. “You move across from green to red on completing a specific task, like visiting Hadrian’s Wall, one of Chris’s favourite sites. Now Chris uses the board independently and knows what his day will be like.”
Thanks to the college, staff and other students, Chris’s change in behaviour has spilled over into home life. Taking someone like Chris to a pub had always been a challenge - but now he goes in with his family and rather than getting upset and doing things he shouldn’t, he calmly sits down to eat chips - one of his favourite foods - along with a couple of soft drinks; he doesn’t drink alcohol.
“Sarah’s helped him so much. Now he is just so calm. He smiles - he never did that before - and he belly laughs! Point a camera at him and he’ll look at it and smile! And I can text Sarah myself any time and she’ll always reply - even outside school.” Chris shows his admiration for Sarah when his mother drops him off at college. “He’ll go straight up to her and smile and actually hug her. You can see the admiration in his face. He just wouldn’t tolerate any physical contact with his teachers before.” Even though he can’t write, his communication skills have come on massively because of the class he’s in. He communicates with others, albeit on a basic level, about what food and drinks he’d like and the places he would like to visit.
He’s a keen hiker but used to have to go for a walk with two or three people on either side as he would suddenly dart off and had a constant scowl on his face, according to his mother. “Now it’s joy to see him - he’s not scowling any more but smiling!” “Sarah’s got our son back, and we can’t put into words how thankful we are. It’s like she’s taken a badly knitted jumper, unravelled it to start again and made it good. She has a special skill.” Chris, meanwhile, remains in a really good place and the family is seeking funding for him to spend a third year at the college.
Coming shortly: My favourite lecturer - Sarah Hetherington