The recognition that a person is on the autism spectrum can occur throughout the lifespan and people have very different experiences of diagnosis. Some children are identified as having autism from early stages of development (from 2 years), however, other people have not received a diagnosis until adolescence or adulthood.
Autism can be diagnosed from early childhood, but assessments can be undertaken at any age. Autism is diagnosed through an assessment which includes observing and meeting with the individual, their family and service providers. Information is gathered regarding the individual’s strengths and difficulties, particularly in the areas of social interaction and communication, as well as restricted and repetitive interests, activities and behaviours. Such information may be obtained using standardised tests or questionnaires. There is neither a single behaviour that indicates autism, nor are there are blood tests that can detect it. This can make the diagnostic process quite complicated and can cause significant delays for individuals and their families.
If you have concerns, your GP may refer you to a developmental paediatrician or diagnostic assessment service in your area. Children are often diagnosed by developmental paediatricians, psychiatrists and psychologists with experience in assessing individuals with autism.
Adults can also be referred by their GP to clinical psychologists or psychiatrists in their area. Getting a diagnosis as an adult may help people to understand some of the difficulties that they have experienced and may also help them to access support services.
Further information leaflets on autism diagnosis can be accessed in Resources.
Barriers to diagnosis
For many people with autism obtaining a diagnosis can bring numerous benefits; opening doors to additional help and support. Going through this process can however be emotionally difficult, especially for adults who self-diagnose their condition. Some people decide not to pursue a formal diagnosis and the reasons for this can differ significantly from one individual to another, just as the condition presents itself differently from person to person. While many people find obtaining a diagnosis a rewarding and useful process, some have found it to be long, daunting, and complicated.
The diagnostic process can often be unpredictable and time-consuming, it also relies on a person being willing to pursue a diagnosis and to deal with unfamiliar social environments and situations throughout the process. Whilst often ultimately rewarding, this can be a stressful experience for many, including the individual and their parents and carers.
Benefits of diagnosis
Seeking and obtaining a formal diagnosis can bring a variety of benefits and can help to explain why an individual struggles to understand the world around them. It can help to give an individual a greater sense of identity and make them feel better prepared to face the challenges that might arise. Difficulties that an individual has struggled with for a long time can be placed into context. Getting a formal diagnosis and learning about the condition can provide a sense of relief as it brings an understanding of why the difficulties appear in the first place and how to tackle them in future.
This better understanding of oneself can not only lead to improvement in making contact with others, but can also help people who do not know much about autism understand the nature of the difficulties associated with the disorder. This can be particularly important for families and partners of those on the autism spectrum. Many people with autism express feelings of being misunderstood, teased, bullied or isolated; when the people closest to them are able to understand that there is a reason for their difficulties, it can be easier for them to empathise and to offer informed support.
Getting a diagnosis also allows to access autism-specific services which can provide help and support with day-to-day living. It may also help to join an autism community and meet other people with autism in order to share and learn about personal experiences. Getting a diagnosis can be difficult. However, pursuing it is a very individual choice and can be enormously rewarding when it is achieved.
Currently, recognised international criteria are included in the Diagnostic and Statistical Manual (DSM-V) of the American Psychiatric Association and the International Classification of Diseases (ICD-10), issued by the World Health Organization (WHO). The fifth edition of the DSM published in May 2013 has a new overarching diagnostic category, known as autism spectrum disorder, which incorporates previously separate diagnoses, including AS and PDD-NOS.
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