MPs have called on the government to put in place measures to improve diagnosis times for autism and support a public awareness campaign to help the UK become more autism-friendly.
The call came in a 3-hour debate in the House of Commons on April 28 to mark the recent World Autism Awareness Week. The debate was called by Cheryl Gillan, Conservative MP and chair of the all-party group on autism.
“For people and families who live with autism every day, improving understanding is fundamental to ensuring good levels of health and wellbeing and an ability to participate in society,” said Gillan.
For instance, a recent survey by the National Autistic Society (NAS) found that 79% of autistic people feel socially isolated and half of autistic people and families sometimes do not go out because they are worried about how the public will react to them.
Gillan went on to highlight how long it takes, on average, for people to receive a diagnosis of autism – 2 years for adults and 3.6 years for children. “An autism diagnosis can be life-changing, explain years of feeling different and help to unlock professional advice and support. Government guidelines say that a diagnosis should not be a barrier to putting in place the right support, but 58% of people on the spectrum have told the NAS that a diagnosis led directly to getting new or more support. How can the right support be identified without the clarity of a diagnosis?”
She called for NHS England to collect, publish and monitor key information on how long people are waiting for diagnosis, and how many people are known by their GP to have autism. “It should also ensure that waiting time standards on mental health, which are currently in development, reflect national guidance that no one should wait longer than three months between referral and being seen for diagnosis,” she said. “The government must share this commitment and ensure that NHS England meets its aims. Timely access to an autism diagnosis should be written into the government’s mandate to NHS England.”
Liberal Democrat MP and former care services minister, Norman Lamb, added: “[There is a] strong economic case that if we invest in diagnosis and early intervention, we will save a fortune in lifetime care. As we learn, the government have to respond. That is the challenge. This government, because they are here now and because new learning can lead to improvements, have a responsibility to respond.”
Labour minister Cat Smith added: “Diagnosis opens up a support network, so will the Minister [Alastair Burt] ensure that NHS England’s new autism care pathway includes and reduces diagnosis waiting times?”
Smith also called on the government to do more to raise awareness of autism. “Around 800,000 people in this country are affected by dementia, and the government have shown great bravery in trying to change public attitudes by spending more than £2 million on awareness campaigns. The same work needs to be done for people on the autistic spectrum. I am aware of the government’s £340,000 programme in this area, and I am looking forward to hearing the Minister’s remarks, telling us more about the scope of this project. With programmes such as The A Word on the BBC and the books and articles that are out there, now is the time for the government to turn this awareness of autism into a true understanding.”
Labour’s Jess Philips – who said she was a mother on “the long waiting list for diagnosis” for her son – added: “The Department for Work and Pensions has made some impressive commitments over the past few years in saying that Jobcentre Plus will implement autism awareness and autism networks. I welcome all this, but in reality it is not what people in my constituency are experiencing. One constituent told me: “I do not blame the staff, but it comes down to a lack of understanding of autism. The support the jobcentre claim to be providing is not there. I was treated as though I had no disability and left to my own devices. That is the problem of having an invisible disability.””
Luciana Berger, Labour’s Shadow Minister for Mental Health, also called for an enhanced national awareness campaign. “Raising the profile and public understanding of autism would break down some of the stigma, tackle the prejudices, and make it easier to explain autism to those who remain unaware of the realities of the condition.”
Berger also asked what individual government departments and agencies beyond the Department of Health are making to support people with autism and which have an up-to-date strategy for dealing with autism?
Minister for Community and Social Care, Alastair Burt, responded, saying: “The Department of Health’s mandate to NHS England for 2016-17 calls on the NHS to reduce health inequality for people with autism. Waiting too long for a diagnosis can be one of the health inequalities that autistic people face. The mandate has already got that, and it is very important that it relates to autism.
“Clinical commissioning groups and NHS England are working to bring down the waits in line with NICE guidelines.”
Mark Lever, chief executive of the NAS, said: “This welcome debate drew attention to the huge barriers autistic people and their families face each day, just to do things that other people take for granted - whether that's being supported in school, finding a job or even feeling able to go to the cinema or shops without feeling judged.
“Over 40 MPs were involved, talking passionately about the challenges faced by their constituents and some spoke of their own experience as the parent of an autistic son or daughter. There seemed to be a will to make real changes, particularly to improve public understanding of autism and reduce the length of time people wait for a diagnosis. It’s important that this momentum isn’t lost and we’ll be following up with all the MPs about how to take this forward.
“Autism is complex and autistic people and their families don’t expect or want people to be experts. But a basic understanding of autism would transform the lives of the more than 1 in 100 autistic people in the UK and break down countless barriers. This is why we're calling for a clear commitment from government to support a public awareness campaign over the coming years.”