New statistics released on Monday 16 June by The National Autistic Society (NAS) have revealed the devastating scale of neglect and abuse experienced by adults with autism. The charity is warning that government plans for the care system could make the situation worse.
A survey by the charity has uncovered stark stories of neglect. Nearly two-thirds (65%) of adults with autism reported that they require someone to prompt them to wash, dress or feed themselves. They may be physically able to do these activities, but without prompting many will not know to pay attention to these basic, everyday needs.
However, 7 in 10 adults that need prompting said they have missed meals because they did not get this support, and 86% said that they had not washed.
The charity's survey also revealed alarming experiences of abuse. People with autism can find it difficult to interpret others' motivations and, left unsupported, many are taken advantage of or manipulated. Almost half (49%) of respondents to the NAS survey said they have been abused by someone they thought of as a friend, while more than 1 in 4 (27%) have had money or possessions stolen.
More than 1,300 people answered the charity's survey. Of those that responded:
- 37% have been forced or manipulated to do something they didn't want to do by someone they thought of as a friend
- 44% said they stay at home because they are afraid of being abused or harassed
The NAS is now warning that government plans to change the care system could put even more people with autism at risk of being unfed, unwashed or afraid to leave the house.
Recently published draft guidance for local authorities remove a requirement to provide support to people if 'abuse has occurred or will occur'. The Government's proposals also suggest that people will be eligible for care and support only if they need 'assistance' to carry out essential everyday tasks, which may not necessarily include prompting. The NAS fears these significant changes will potentially cut off adults with autism from getting the support they need to stay safe and healthy.
The charity has launched its Careless campaign, to challenge the proposals that would set eligibility criteria for local councils without taking into account the basic needs of many people with autism.
Mark Lever, Chief Executive of the National Autistic Society, said:
"These alarming figures paint a depressing picture of the horrendous abuse and neglect experienced by many adults with autism. We have heard deeply distressing stories of men and women living in utterly intolerable conditions, exploited physically and financially by supposed friends or unable to care for themselves without support.
"One professional told us of a man who had been found at home suffering from severe malnutrition and with mould growing on his skin as he was unable to feed or clean himself without prompting. This is utterly unacceptable in 21st century Britain.
"We know that many people with autism are able to live relatively independent lives, but many others need support to stay safe and healthy. The Government's changes to the care system offer a chance to support these at-risk individuals. However, we are incredibly concerned that the current proposals as they stand do not recognise the basic needs of these more vulnerable people with autism.
"It's not too late. The eligibility criteria must be revised so that they explicitly recognise the support needs of those at risk of abuse and neglect and protect some of the most vulnerable people in society."
Richard Hawkes, Chair of the Care and Support Alliance, a consortium of over 70 organisations that represent and support older and disabled people, said:
"We back this campaign. Too many people who struggle with day-to-day tasks face a battle to get the quality of care they need.
"We are also concerned that recent Government proposals for who gets care risks hardwiring the year-on-year rationing that's seen people squeezed out of the system.
"Eligibility must not be set so high that people at risk of abuse are not entitled to the support they need to keep safe.Without the right support people's lives fall apart. This places unbearable pressure on family carers.
"Sitting behind all of this is a story of chronic underfunding that has seen councils restrict who they give care to.
"There is still a chance to make a change. The Government must be bold, invest in care and create a care system that gives older and disabled people - and the families who care for them - the support they need to live well."