Ethan King is a 21 year-old man with autism who suffers from constant pain and extreme anxiety. King is just one of many people with autism who are increasingly locked in prolonged and costly appeals and disputes with the Department of Work and Pensions (DWP) after they have been refused benefits on often tenuous grounds. He and his mother now face destitution after last month he was told he would not be awarded his Personal Independence Payment (PIP) after being taken off his lifetime award of Disability Living Allowance (DLA).
Ethan struggles to leave the house, finds it impossible to complete tasks without support and has a sleep disorder which means that he sleeps through the day. Though his mother, Deb King, asked for his assessment to take place in the evening, when Ethan would be awake, the only time slot that was offered to her was 12 to 2PM. When the assessor arrived, Ethan was asleep.
King took the assessor up to her son’s bedroom and he asked Ethan, "Are you able to talk to me?" to which Ethan responded, "No." This interaction was enough for the assessor to describe Ethan as having "normal understanding and communication" in the report that followed.
Ethan's mental health social worker had made him a care plan with goals for him to aspire to. One of them was to be more independent. Weirdly, in the eyes of the expert assessor, this meant that Ethan "needs prompting to prepare or cook a simple meal". In fact, Ethan’s mother said, "If I prompted my son to prepare and cook a simple meal, there would be no meal."
On the basis of such bizarre observations, Ethan received seven out of 12 points on the assessment, one shy of the eight required to receive PIP. Those who are awarded 12 receive enhanced support. Successful claimants can receive anywhere between £22.65 to £145.35 a week. But with just seven, Ethan gets diddly squat.
The government’s website states that "The amount you get depends on how your condition affects you, not the condition itself." However, critics say it is impossible to fairly assess autistic claimants' needs without understanding the condition. A common criticism of PIP assessments is that the professionals hired by Atos and Capita have no mental health expertise. It probably didn’t help that Ethan’s Atos assessor was a physiotherapist. In another case in Scotland, the assessor was a colorectal nurse.
"Ethan should be a 12 because his care needs are really significant," said Deb King. "He can't go out, he can't walk anywhere on his own, he needs help with everything, he can only just about dress himself."
Because Ethan did not score eight or over, King is not eligible to claim carers' allowance, reductions on her council tax or income support. She was entitled to all of these things when Ethan received DLA. She is now in the process of challenging the decision, though the appeals process can take up to a year.
"We're facing absolute destitution if this decision goes through – I might not be able to keep the roof over our head," she said. "I'm staring into the abyss here."
She's not the only one, as many children and adults with autism are being failed by private companies providing personal independence payment (PIP) assessments, according to charities and claimants. As a result, some of the most vulnerable children in society end up without the support to which they are entitled, as parents spend months battling to secure the benefits they and their children need.
Appeals heard by the DWP tribunal have increased by 740 percent, rising from 20 in 2015 (the year PIP was introduced) to 1,480 in 2017. According to the most recent figures, parents and claimants are successful in 71 percent of tribunal hearings, prompting concerns that the private companies that PIP assessments are outsourced to are making poor decisions, preventing vulnerable children and adults from accessing support.
MP Angela Eagle expressed her concern that PIP assessments are letting down autistic adults and children. One of her constituents in Wallasey recently had his PIP support revoked and the assessment report he received said he was "getting better".
"I don't see how you can have autism and be told by a supposed specialist you’re 'getting better' – it’s widely known that you can’t get better from autism," Eagle said. "I want the government to implement a system that helps people rather than catches them out."
Many commentators have criticised PIP assessment criteria for excluding autistic claimants in its very wording. Last year, the mobility part of PIP was changed to remove "psychological distress" as one of the reasons why a person would be unable to plan or follow a journey. Anxiety and distress are some of the main reasons autistic people struggle with routine tasks. The decision was overturned later in the year following a legal challenge involving the National Autistic Society (NAS).
But Tim Nicholls, Head of Policy at NAS, still has serious concerns about the PIP assessment process. "We've heard deeply concerning reports of assessors not understanding autism and how to adjust the assessment for autistic people," he said. "This means that some autistic people are being wrongly refused vital support. Not receiving this support or having it removed can be devastating and mean that people can’t get out and about or live the life they would choose.
"There's a clear and urgent need to improve assessments for autistic people. We all have a responsibility to do our bit to create a society that works for autistic people."
Ruth McGoldrick lives with her 20-year-old son in Aylesbury. He has severe autism, dyslexia and ADHD, yet received a four in his PIP assessment, making him ineligible for financial support. She explained that her son rarely leaves the house, suffers from extreme migraines and spends the majority of his time and all of his money playing Warhammer.
"To say that he has no needs is false, and it's based on a completely inadequate offering by the private companies who do the assessments and the government who allows them to do it," she said.
Though McGoldrick provided hundreds of pages of medical reports that she had amassed over the past decade, she believes none of it was referred to in the final assessment.
A DWP spokesperson said: "We’re committed to ensuring that people with autism get the support they need, and we want people to feel they are treated fairly and sensitively throughout the PIP assessment process.
"The health professionals carrying out PIP assessments receive specific training in autistic spectrum disorders, and 44 percent of people with these conditions receive the highest rates of PIP."
But for McGoldrick, the system is doing more harm than good. "My son is really smart. If I could support him properly I could give him extra therapy, extra resources, and he would produce amazing things," she said. "The government are sowing the seed for a generation of people who are more unwell, with more severe mental health problems. It’s a false economy."