Husband and wife David* and Christine* haven’t had a night out together since their daughter Jenny* was born. New parents will be able to relate to this. But Jenny is now in her twenties and her parents still daren’t leave her for more than an hour. For despite having an IQ of 130, Jenny has Asperger’s syndrome and, while she has immense intellectual skills, she finds it impossible to learn any life skills.
As a developmental disorder resulting in difficulties with social interaction and communication, autism is neither a learning disability nor a mental health problem. This has led to autistic adults falling between the two services: learning disability teams refuse to become involved where someone’s IQ is too high – it needs to be below 69 to qualify for a service – while mental health teams turn these individuals away because they don’t fulfil their criteria either. Some people with autism will have an accompanying learning disability or mental health problem which may qualify them for a service, although this will generally be for the accompanying disability and not for the problems associated with autism.
How many adults with autism?
There are an estimated 300,000 adults with autism in England alone. But with government, local authorities and primary care trusts unaware of exactly how many adults with autism there are, it makes it difficult to plan and deliver the services they need.
The National Autistic Society (NAS) believes a government-funded prevalence study is what’s needed. It says numbers with autism – not just those receiving services – should be counted locally, and autism training for staff who carry out care needs assessments is also required.
According to I Exist, NAS’s report published this week as part of its campaign to focus on how the needs of autistic adults are ignored, 45% of councils have no process for managing how autistic adults receive support if they don’t fulfil the criteria for either learning disability or mental health services (see box). As a result, adults like Jenny and her parents, are left to cope alone.
Jenny wasn’t diagnosed until she was 15, by which time she’d been through three secondary schools because of bullying, been written off by teachers as a troublemaker and tried to commit suicide. This led to the mental health team getting involved, and they still see Jenny every three months. But they know little about autism and there is no active support.
Although Jenny receives direct payments, there are no appropriate services to purchase. She’d like to have a personal assistant to help her live more independently and give her parents a break, but has been unable to find anyone trained in Asperger’s. Christine warns that, without this understanding, any PA “would be offended quickly by what Jenny says and leave”.
Support – financial or otherwise – is elusive. “Professionals can’t understand that my daughter can’t cook a meal but could write a report on the Russian revolution,” Christine says. “Trying to prove your case for incapacity benefit – where they use a medical model of disability as the criteria – is so unjust.
“The big tragedy with Asperger’s is that they know they have the condition and what it is and they can’t do anything about it. That’s where depression and frustration come in.”
Christine wants Asperger’s-specific training for staff. “There should be talking therapy support and, spinning off from that, courses on independent living skills, social skills, sexuality and relationships, money management and anger management,” she says. “Supported housing and employment training should be available too. This would make people’s lives 100% better. It’s getting professionals to understand what is needed.”
Christine knows she isn’t asking the impossible because these services are available in some local authorities. For example, the multi-agency Liverpool Asperger Team, established in 2003, is funded by the local authority and the Central Liverpool primary care trust. It comprises a team manager (who is also a speech and language therapist), two community nurses, two clinical psychologists, an assistant psychologist, a social worker, two support workers, an assistant clinician and an administrator.
Team manager Christine Austin says more than 400 people have been referred for assessment and intervention and most arrive with no prior diagnosis and have never had contact with any services, showing what a hidden condition it is. The team has even diagnosed three people in their sixties.
“Our clients don’t make waves,” says Austin, explaining how they have been overlooked for so long. “They’re not happy but they aren’t causing anyone any problems, and many live with their families who support them.”
Jane wasn’t diagnosed with high functioning autism until she was 30. Now 44, she lives independently in a housing association flat provided by the mental health team. At the moment things are going well, with support from a consultant psychiatrist, a GP, a community support organisation and the NAS employment agency Prospects.
But she has a history of depression and mental health problems and partly attributes this to a lack of support for her autism. She struggled to be diagnosed because she had a degree and seemed relatively independent.
“Local authorities need to see that someone’s life is in a mess,” Jane says. “But I’m very organised so don’t tick any of their boxes. Because I don’t look ill they don’t know what to do. There’s a place for a specific autism worker in each local authority.”
Wendy Atkinson agrees. As Oldham’s assistant locality manager for adult autism services, she is that person. It is no coincidence that her local authority has obtained autism accreditation from NAS for its supported tenancy provision and day and respite services.
Oldham Council has invested in multi-agency autism training so that, whether a service user needs a speech and language therapist, a psychologist, a health professional or a drama therapist, they understand the needs of people with autism.
The council was also a pilot for the In Control scheme, and several autistic adults have been helped to use their budgets to buy support services and employ a PA. It also provides supported housing. Those with Asperger’s or higher functioning autism are supported by the vulnerable adults team.
All this is galling for parents like Christine who are offered nothing. “I’m so angry with the system and society that they are not even giving my daughter a chance,” she says. “Because they aren’t accommodating her disabilities she is barred from things that everyone else takes as a right – it’s discrimination.”
However, she refuses to give up hope. “I have to believe that things will change at some point. That’s what keeps me going, plus the love for my daughter. How can I not keep challenging the system? And by doing it for her, I’m doing it for others.”
A year ago Christine found her daughter looking at internet suicide sites. Jenny plans to kill herself when her parents die because she has no other relatives or friends to turn to. “Jenny thinks ‘who will love me when you’ve gone’,” she says.
This is a sad indictment of the world that many autistic adults are living in.
ADULTS WITH AUTISM
Source: An NAS survey of 1,400 people in England for I Exist. Go to www.think-differently.org.uk
* Names have been changed
This feature appears in the 7 February issue of Community Care under the headline ‘I don’t look ill enough’