Two important reports on autism in as many weeks have confirmed what the NAS and our members have been telling Government for some time:
Whether it is in education, at work or in health and social care settings, people with autism and their parents and carers are frequently misunderstood and discriminated against often with profound consequences not only for individuals and families, but also for the wider economy.
On the 5th June the National Audit Office’s (NAO) comprehensive report on adults with autism found that issues such as the lack of awareness of the numbers of people with autism, too few diagnostic services and a poor understanding of the condition amongst health and social care professionals prevent the Government and local agencies from planning and delivering the services that people with autism and their families really need. A worrying 80% of GPs surveyed by the NAO said that they need additional guidance and training in order to identify and treat people with autism more effectively. This is certainly something which has been borne out through our own research for Carers Week (8th-14th June), with hundreds of parents and carers of both children and adults with autism saying that they had simply been left to ‘get on with it’, particularly post-diagnosis, and offered very little information or support. They also delivered a damning indictment of the local authority support available, where a mere 5% said they had been of most help to them in their caring role.
The majority of parents and carers said that many of the difficulties they face are symptomatic of the dearth of support for those that they care for. For those with adult children, this can have wide-reaching financial implications particularly in terms of lost employment for both parties. Many adults with autism want to work but experience great difficulty in finding and staying in employment often due to misunderstandings related to their condition and inadequate support. Consequently, only 15% are currently in full time paid employment. Also sadly, almost 70% of parents and carers of people with autism said they had to give up work to fulfil their caring responsibilities and a shocking 68% spend over 70 hours a week caring. This equates to a meagre 75p per hour. At just £53.10 per week, many parents find that Carer’s Allowance is not an adequate income replacement and that it simply does not cover the additional costs of caring for someone with a disability. Not only that but it fails to recognise the demands of their role, the number of hours they spend caring or the number of people they care for. It is hardly surprising, therefore, that just 16% of carers of people with autism said that they felt valued.
It is abundantly clear that neither the Government, individuals and families affected by autism nor the taxpayer are getting value for money from existing autism services. Adults with autism are left feeling isolated, ignored and often at breaking point. At least 1 in 3 adults with autism told the NAS they are experiencing serious mental health difficulties due to a lack of help, often meaning they require more intensive and expensive support at a later stage. For the first time, the NAO has evidence that providing this severely excluded group with appropriate health, social care and employment support could prevent their needs from escalating and save money. In the long term identifying and supporting just 8% more of the population of adults with autism could save up to £67 million per year. Over a year ago, the Government committed to doing a prevalence study to establish the number of adults with autism. This has not yet happened and urgently needs to be undertaken. In the current economic climate they cannot possibly ignore the huge potential cost savings and benefits identified by Parliament’s spending watchdog, of providing adults with autism with the right support at the right time.
The consultation for the Government’s strategy to improve support for adults with autism is currently open. We’d like to see as many MPs as possible holding consultation events in their constituencies to help people with autism and their families have their say. The strategy could have the force of primary legislation via the Autism Bill currently going through Parliament so it absolutely crucial that the Government gets it right by listening to adults with autism and their families and the NAO’s critically important findings.
Without the right support autism can have a profound and sometimes devastating effect, so we will keep campaigning until people with autism and their parents and carers are able to enjoy the same rights and freedoms as everyone else.
