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People with autism face challenges accessing support

One in a hundred people in the UK has autism and while some are able to live relatively independent lives, others may need a lifetime of specialist support.

NICE (the National Institute for Health and Care Excellence) conducted a study and concluded that for health professionals to appreciate the varying challenges that autism can present among different age ranges, a higher level of training is needed

Consultant paediatrician at Guy’s and St Thomas’ NHS Foundation Trust, Professor Gillian Baird, explains: “Many people who have autism will have other physical, neurodevelopmental or mental health conditions such as intellectual disability, attention deficit hyperactivity disorder, anxiety and sleep problems which are not always recognised.

“Assessment needs to be tailored to the individual and their families or carers, to enable them to get the right intervention and support from education, health services and voluntary organisations.”

Adults with autism are some of the most excluded and least visible people in the UK.  There are no physical signs and it can be a very isolating condition.  Autism is often described as ‘the hidden disability’.

How better to help people understand that there is support for them and that they can access and benefit from it, than showing them the impact that good services can have?

NAS (the National Autistic Society) is, for many families, one of the first places that they contact when looking for help, advice and support. NAS assembled an informal commission of members of the House of Lords earlier this year to look at the challenges facing older people with autism.  They produced a report, ‘Getting on? Growing older with autism’, calling for the following:

Healthcare professionals working in age-related specialisms to be trained in autism

• Local NHS bodies to make counselling available to people with autism after they have been diagnosed, where this is not already available

• Older people to not be disadvantaged in diagnosis by the need to provide evidence of their developmental history, if this is not available

• The Department of Health to fund research on overcoming the challenges posed by diagnosing older adults with autism

Baroness Greengross said: “I have worked in older people’s policy for over thirty years. But during this time I’ve heard little about older adults with autism. In part, this is because the first generation of adults diagnosed with autism is only now moving into older age. But it is also because this group has simply been overlooked.”

NAS is also focused on reaching out to ethnic minorities.  Tom Madders, head of campaigns at NAS, says: “We frequently hear from individuals and families who say that cultural and language barriers prevent them from accessing the support they desperately need.”

The campaign was launched with the help of MP Diane Abbott, who commented: “This campaign highlights an incredibly important issue. Many of my constituents from ethnic minority communities struggle to receive the Special Educational Needs support they need for their children, and these difficult experiences are replicated across the UK. It’s vital that we do more to understand autism and its impact on black and ethnic minority communities – we hope this campaign is a first step towards a greater understanding and better support.”