Selection of Guardian extracts:

“I saw being autistic as an opportunity, not a weakness”

Young autistic people want to be accepted by employers for who they are, says award-winning campaigner Jonathan Andrews

Jonathan Andrews was once advised to hide his autism from prospective employers. Instead, he is making his name by doing just the opposite.

“I saw it [being autistic] as an opportunity, not a weakness,” says Andrews, 22, who recently won campaigner of the year at the European Diversity Awards 2016. The law graduate, who starts as a trainee solicitor at Reed Smith in August, says: “I wanted to work somewhere that wouldn’t see the word ‘autism’ on an application and think, ‘This is terrible.’ The ones [prospective employers] that took it in their stride were the best workplace environments, rather than places that talk about it [autism] all the time, because they think you’re this strange, exotic creature.”

Andrews is a member of the first parliamentary commission on autism, and has advised the government on its green paper covering work, health and employment, which proposes to help at least 1 million disabled people into work and to consult on overhauling the notorious work capability assessment. Consultation ends later this month.

Although there are 700,000 people on the autism spectrum in the UK, the condition is widely misunderstood. The spectrum includes people with learning disabilities as well as “high-functioning” individuals and those who find interaction difficult.

“I’ve heard things like, ‘You don’t look autistic.’ But do you hear anyone say, ‘You don’t look dyslexic’? People understand dyslexia is a different way of thinking and that’s what we need to get to [with autism].”

Growing up, Andrews was an avid reader and writer but “not interested in the same things as my peer group”, he recalls. His younger brother defended him from verbal abuse at school. “It was words like ‘retard’ … I developed a thick skin, people used to tease but I felt it was best not to focus on them.”

Andrews’ anxiety made him a quiet teenager but, he adds, “just because you don’t speak doesn’t mean you don’t have anything to say”. His bid to improve his confidence set him on the campaign path as he forced himself to speak up about autism. “I wanted to achieve things like going to university and into law, and I knew someone wouldn’t take you on just because you’re nice – it’s competitive – so I exposed myself to those [social] situations … learning how people expect you to talk to them.”

Andrews is positive about future employment equality for autistic people. Given rising diagnosis rates, he predicts a groundswell of support for action: “There are a lot more young people who will be diagnosed with autism than previous generations. A lot of them are not going to want to be handed a job – they’ll want to use their skills and contribute to a firm and be accepted for who they are. If firms don’t get that, they’re missing out on that talent.”

Published in the Guardian, Jan 31 2017

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Unbreakable Spirit

Since her learning disabled sister has been at a special college, Saba Salman has watched her confidence and ability bloom. But why should families have to fight for such care?

Like most teenage girls, my 17-year-old sister, Raana, enjoys shopping with her college friends. But for Raana, hanging out at the mall is more than a teenage rite of passage - it is a huge developmental milestone. Raana has fragile X syndrome, the most common form of inherited learning disability. Her moderate learning difficulties and behavioural problems made shopping a traumatic experience.

Because of her aversion to crowds and strangers, Raana would refuse to go up to the cash desk or handle money. Even when I stood with her to buy something she clearly wanted – a CD or a magazine – Raana could not control her instinctive reactions. The repeated shouts of "no" escalated into a full-blown tantrum and I would give up, finding it easier to pay for something on her behalf, thanks to the sideways glances from other shoppers and the desire to spare my sister any further stress. When she was younger, family excursions would involve packing a few small towels, just in case Raana got so stressed that she vomited.

Now, however, Raana regularly goes to the town centre near her new college with fellow students, accompanied by a tutor. She browses, picking up items and discussing their relative merits with her friends. Under supervision from tutors, she calmly queues up, gets her pocket money out of her purse, makes eye contact with the sales assistant, often saying "hello", and pays for her things herself.

One year into her four-year course, she is more independent, confident and self-aware. She has developed an interest in makeup and clothes. She put outfits together herself and, much to my mother's amazement, tidies up after herself and neatly packs and unpacks her belongings when she comes home from college. She pays more attention to questions, makes eye contact when she answers – often ordering her own meal during family trips to restaurants – and is generally more calm, settled and content.

Raana is proof that with the right social care, education and therapeutic support, children with fragile X can flourish. But if Raana's fate had been left to the local learning and skills council (LSC) that funds her post-16 education, she would be attending a special needs day course at a nearby community college.

Despite the best will in the world, too often the child is a square peg being forced into a round hole. What should be a right – appropriate care and education –becomes a fight. If every child truly matters, that sentiment must be applied literally, with more specialist support and earlier intervention based on the very individual requirements of young people like my sister.

I am convinced Raana is receiving the best possible care, education and support to fulfill her needs. She has chosen gardening as her main course. I suspect this is because no one else in the family is green fingered, so it is a skill that Raana can call her own. She has recently done a lot of planting, and proudly tells me what she is growing.

She is learning to be more patient and is developing her nurturing skills. As my sister continues to grow emotionally and socially, I get a glimpse of the confident young woman – perhaps even a fully functioning member of society – that I hope one day she will become.

Published in the Guardian, Dec 13 2006

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Learning disabled people are dying because they receive less good care

Following the Winterbourne View abuse scandal, there’s been a lot of well-intentioned talk but little actual progress in improving the care of vulnerable people

By the time Robin Kitt Callender died, she had endured eight weeks of intermittent vomiting and diarrhoea, and her weight had fallen to five stone. In the four months before she collapsed at her Essex care home, the 53-year-old had visited her GP six times and A&E twice, but her inflammatory bowel disease remained undiagnosed.

Callender, who was severely autistic and partially sighted, with communication difficulties, died on 23 May 2012, less than 24 hours after finally being admitted to hospital.

An inquest last week concluded that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff and missed opportunities to save her. Care home staff took her to the doctor, but failed to tell her sister (who usually accompanied her to medical appointments) of the severe symptoms until the day before she died.

Anxious, in pain and unable to communicate, Callender suffered needlessly. She was a victim of institutional disablism; her death highlights the unequal status of people with learning disabilities, their below-par care and the lack of communication between care providers and families that compounds this inequality.

There are 1,200 avoidable deaths of learning-disabled people in the NHS every year, according to Mencap’s research into “death by indifference”. A government-commissioned confidential inquiry into the premature deaths of people with a learning disability found that, on average, people die 16 years sooner than in the general population, with many deaths avoidable.

Among the families seeking answers and lobbying for change is that of Connor Sparrowhawk. Two years ago this month, the 18-year-old, who had a learning disability and epilepsy, was admitted to a specialist NHS inpatient unit in Oxford and drowned in the bath less than four months later. His preventable death led to the Justice for LB campaign and an inquest is due this summer.

The circumstances in the cases of Sparrowhawk and Callender are very different, but the principle is the same: people with a learning disability are dying because they do not receive the same quality of care as other people.

What’s happening to change this? Though well-intentioned rhetoric and reports have demanded improvements in the treatment and status of vulnerable people, actual progress is lacking.

Since BBC’s Panorama exposed the abuse of people at the private Winterbourne View inpatient unit in Gloucestershire four years ago, there have been continuing – but achingly slow – moves to transfer people from institutions into community living. Other glimmers of hope include NHS England’s recent report Winterbourne View – Time to Change, the public commitment by NHS England’s chief executive, Simon Stevens, to close long-stay hospitals, and care minister Norman Lamb’s recent green paper on disability rights influenced by Justice for LB.

However, with an election looming (in which one million people with learning disabilities are eligible to vote), there is no guarantee that the new government (regardless of the outcome) would actually turn the proposals into law. No wonder grieving families like Sparrowhawk’s and Callender’s are forced to become campaigners. Robin’s sister Karen Callender Caplan’s wish is for better training for care staff and “Robin’s Law”, making it a crime for a care home to fail to inform families if someone who is in their care, and who lacks capacity, falls ill and dies. “Society’s indifference is staggering,” she says of her sister’s life and death.

Until people with a learning disability are regarded as equal citizens, the lives of “thousands of vulnerable and unprotected Robins out there”, as her sister says, remain at risk.

Published in the Guardian, 24 March 2015