Autism: Rights in Reality, published last week to coincide with Autism Awareness Week, said people with autism and Asperger's syndrome 'don't fit the current ways of thinking about disability nor the eligibility used to measure the support needs of people with disabilities and their families'.
It found that more than a third of carers (36 per cent) openly admitted that they did not understand the benefits system, and almost two-thirds (64 per cent) of those who had claimed benefits encountered problems filling out the forms.
But where people were able to get some help, they had to fight for it. Of those receiving disability living allowance, 30 per cent had gone to appeal to get the right rate, rising to 45 per cent among families on low incomes.
The report cited the example of Lisa, whose daughter Sian was first diagnosed with autism at the age of four. Lisa said she felt 'lost and alone' and that 'no-one ever told me I was entitled to anything'. She only found out about benefits, ranging from Disability Living Allowance to free nappies, through word of mouth and the internet, but she still had huge problems accessing these rights.
The report also gave the example of another mother, Julie, who is a full-time carer of her three autistic children aged three, five and seven, who receives no respite care. She said, 'To have access to a few hours of respite care every now and then would be wonderful.'
Steve Broach, co-author of the report, said, 'People with autism spectrum disorders find themselves doubly excluded, first as result of their social and communication impairments, and then because support services are not designed or equipped to effectively meet their needs.'
Mr Broach said the Government had started to address this exclusion, but more needed to be done. He added, 'An urgent priority is autism awareness training and job-specific training in autism for all professionals working with this group.'