Diagnosis of autism

At the beginning you just think ‘ah, the diagnosis is there I’ll just automatically get services’, but that’s the very, very beginning … you’re not always given a lot of information about what that diagnosis actually means.

(Mother of autistic man)[13]

Autism diagnosis is a task for trained medical professionals – however, a well-informed social care workforce has a vital role to play in identifying people who might have autism, but are as yet undiagnosed. Social care workers are also important sources of support at the point of diagnosis, and in the weeks and months that follow.

The benefits

Getting a diagnosis of autism, especially as an adult, can be hard, and four out of five adults in our research found it either difficult or impossible.[13] It may be particularly difficult for women, as their autism may present in ways unexpected in traditional diagnosis.[8] A diagnosis of autism does not automatically lead to service provision, but there are some key benefits:

• It helps explain what had previously been unknown or misunderstood.
• It should lead to an assessment of need by social care – in England as part of the statutory duties described in the guidance for ‘Think autism’. [20]
• It can help shape an improved support package, as long as this is not done in a mechanistic, ‘someone has this, they get this’ way. [13]
• It avoids the problems of misdiagnosis, as faced by people with autism wrongly thought to have a mental health problem, and can help to provide a better picture of support needs where autism sits alongside another condition such as learning disability.
• It can assist with accessing services and benefits, such as a disabled students’ allowance. [2]

Referral

The social care workforce needs to know how to make referrals for a diagnosis, and this must form part of the awareness-raising and training they receive. This requires good links between local health and social care bodies, so that timely, appropriate referrals can be made.

While having a diagnosis is important for people, without up-to-date training for service providers it can also lead to misconceptions about what it means to be autistic: ‘At university the counsellor immediately jumped on my application form that I had put down AS [Asperger syndrome] and said that it was impossible as I didn’t have a “special talent” and I was “too expressive” as I looked upset …’.[3]

There are several important things to consider at the point of diagnosis, and in the period that follows.

• A diagnosis is a reason to assess people’s social care needs, rather than exclude them from assessment.[15, 18, 19]
• Diagnoses can indicate what a person might benefit from, but should not be any more than a guide.
• There is still misunderstanding from service providers as to what a particular label means, and further training to understand autism better is needed in areas such as higher education, and the police.[19]
• Good links between health and social care are indispensable at the point when someone receives a diagnosis. We found that 77 per cent of people felt poorly served by support services at the point of diagnosis.[13]
• Social workers are trained to help support people in periods of change and crisis, and have a key role to play in making sure that people get better support when diagnosed. The guidance for ‘Think autism’ requires social services to carry out an assessment of needs following diagnosis.[20]
• Information-sharing between diagnostic services and local authorities/trusts, private and/or voluntary social care providers needs to be swift and appropriate.
• People need good, prompt information about autism, and about where to get support. Who provides what information will vary from area to area, but different organisations must communicate with each other.

Of course, people do not need a diagnosis of autism to be assessed for social care services. Conversely, although people should be assessed if they do have a diagnosis, having autism doesn’t mean that they will then be eligible for support.

Making sure that, following diagnosis, the assessment for and provision of social care services is done in ways that work for people with autism is the subject of the next section.