With John we had 37 years of puzzlement

SUE Smith cannot help picturing what her brother’s life may look like now - had he been diagnosed with autism as he should, had he received the support he so desperately needed, had he lived beyond his 37th birthday.

Ten years since John took his life, she has accepted she will never get the answers she and her family long for.

While she cannot rewrite the past, she is determined to ensure a brighter future for people with autism and has devoted her career to diagnosing the condition before they reach a point of no return.

“It gives you some peace, this idea that you may stop someone having the same experience as John,” says Dr Smith, who leads SEQOL’s autism diagnosis service in Swindon. “But we constantly wonder whether it would have helped him to be diagnosed. Would it have helped his employers to support him? Would it have helped the mental health team to support him? It know it would have made a difference, at least from our family’s point of view, in terms of understanding him. But we didn’t, we had 37 years of puzzlement.”

Socially awkward and uncomfortable with day-to-day interactions, there was never any doubt that her older brother John Blakeney was different from other children his age.

“We always had a sense of John being a little different,” sighs Sue, originally from Hampshire. “He always struggled to make friends and with communication. He was quite hyperactive. I can remember him picking up a twig or a branch and swinging it or shaking it from side to side. It seemed to make him happy to do that for periods of time. It’s known as stimming, doing something repetitive that made him feel better. That’s common with autism but at the time we didn’t know. It was just odd and he was horribly bullied.

“He would get massive meltdowns. People would wind him up and he would explode. That was not his basic nature but people at school learnt how to push him.”

Their parents did seek advice from their GP, but to no avail. There was a limit to doctors’ understanding of autism then – if they suspected autism at all - and Sue explains, there was a tacit view that dealing with it was a family matter.

John left school after O Level and found a job in science research at the same firm as his father. Eventually he completed his A Levels and graduated from university with a masters in computing science.

“It’s not that at any point things were ever easy for John. At work or socially, things could get tricky but he managed,” Sue points out. “But I’m sure at that stage things would have seemed more hopeful for him.”

While he learned to navigate the complexities of social interaction at work and in his own personal life with no support to speak of except from his family, Sue set out on a path of her own to train as a speech therapist.

It is through her course, at 18, that she first learned about autism. The parallels with her brother’s behaviour, social anxiety and daily struggles were impossible to ignore.

She mentioned it to her parents, too uncomfortable at the time to broach the subject with John.

“I don’t know how he felt about it,” she confides. “We were quite normal siblings who annoyed each other and I felt a bit presumptuous or tactless going up to him to mention it. I was only young then. I think my mum and dad talked about it to him later but at that point he was too unwell to cope with processing it.”

John muddled along for a while but while his life plateaued, his colleagues moved up at work and his friends and sister stepped confidently into the future, getting married and starting families. This, Sue believes, prompted his descent into depression.

“From the age of 30 he did seem to slowly slip downhill,” says the 45-year-old pensively. “John was very clever at what he did at work but he didn’t get promoted. His friends’ lives were beginning to change. I think he got a bit stuck. One of the challenging things for us was that I seemed to be somebody who did the more conventional things and I think it was really hard for him. He was the older one, he was meant to do these things first. But he was a great uncle and he was really fond of his nephews.”

Things came to a head when John became plagued by back pain at the age of 35. He was forced to take time off work and spiralled deeper into depression.

Unable to cope any longer, John committed suicide in May 2006. He was just 37 years old and still undiagnosed.

By the time John passed away, Sue had already begun branching out into autism diagnostics. Although she had not fully considered it then, she suspects her career move was likely influenced by her brother’s undiagnosed condition.

After his death though she felt the need to get some distance and take a step back from diagnostics.

“I worried I would be trying to save everybody,” she smiles meekly.

But not for long. Soon she had set plans in motion with colleagues to create a dedicated adult diagnostics service in Swindon to spare people the nagging sense of inadequacy and unshakable despondency which eventually overwhelmed her brother. The service, run by SEQOL, launched in its current form in 2010.

“I had this urge to set up a service and there was a need for it in Swindon,” says the mother-of-two. “The goal is to make sure that anybody who suspects they may have an autism spectrum condition can get a diagnosis and get the right post-diagnosis support. We identify their strengths, needs and where the challenges are. We often find people who come to us have been living with it for years.”

Sue has accepted she will never truly find closure. And when May comes round each year, she feels her brother’s absence as deeply as ever.

This year will be different though and Sue and her family plan to celebrate rather than mourn the man they so dearly miss on the tenth anniversary of his death by completing the South Downs Way - a 100-mile trail John first tackled with his father 20 years ago but was never able to finish. Sue’s eldest son Tom will walk the remaining 50 miles with his 75-year-old grandfather in June and raise funds for The National Autistic Society and Swindon-based autism charity DASH in the process.

Sue, her mother and youngest son Joe, 15, will join them for the last few miles to reach the finish line together.

“We’re just finishing the walk for John,” says 17-year-old Tom. “We wanted to do something active, something he had wanted to do, to remember him.”

Sue nods lost in thought.

“It’s such a horrible time of year for us, and as a family it’s about acceptance and feeling we’re doing something positive,” she says resolutely. “It’s really good to have something positive to talk about too; otherwise losing someone to suicide is a hopelessly difficult situation.

“I want people to know that things maybe didn’t happen the way they should before but it’s not too late to get a diagnosis, to do something that can help.”

To sponsor Tom go to www.facebook.com/finishwalk. To find out more DASH and the NAS go to www.dashswindon.com or www.autism.org.uk.

Factfile

• Autism is a serious, lifelong and disabling condition. Without the right support, it can have a profound - sometimes devastating - effect on individuals and families.

• Autism is much more common than many people think. There are around 700,000 people in the UK living with autism - that's more than 1 in 100. If you include their families, autism touches the lives of 2.8 million people every day.

• 70% of autistic adults say that they are not getting the help they need from social services.

• At least one in three autistic adults are experiencing severe mental health difficulties due to a lack of support.

• Only 15% of autistic adults in the UK are in full-time paid employment.