Autism diagnosis as an adult
Autism spectrum disorder (ASD), or autism as it’s usually known, is a very common condition that usually develops in childhood. It covers a wide range of difficulties, typically related to behaviour and understanding in social settings, causing difficulty with communication and ability to relate to others. It can affect intellect and language in some, leading to mild, moderate or severe learning disabilities. A minority are unable to verbalise.
More research recently has added to understanding of the condition: people with autism see, hear and feel the world differently to others. While the world can be a confusing place and they are often misunderstood unless certain accommodations are put in place, there is a growing body of evidence that they may have skillsets better suited to certain tasks or ways of thinking than non-autistic people.
Asperger’s syndrome used to be a term given to autism in individuals with average or above-average intelligence, but this term is now considered to be outdated, and the term ASD incorporates all types of autism. Some people prefer to keep this term.
About 1 in 100 people are diagnosed in the UK with ASD, and there are more males than females, ranging from 3:1 to 5:1. It’s thought that women and girls may be under-diagnosed as they can cover up difficulties to better fit in with social expectations and norms.
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What are the telling signs?
As doctors, we are seeing more people requesting an assessment for autism as adults, as they have read up on it and symptoms seem to apply to them. Some may appear high-functioning and successful, but they feel something is amiss either in their personal or work relationships, or that they don’t quite fit in. It may get to the point of failed relationships or marriages, being unable to work and being unable to live independently.
Specific examples that point towards ASD include: careful planning before doing something, being meticulous about timing, numbers and following rules, getting bogged down in small details and missing the bigger picture, feeling uncomfortable if people get too close; others may notice you get too close, being rigid in routines and resistant to change, and difficulty regulating some emotions. High sensitivity to touch, certain textures, sounds and smells can feature. And – more difficult to describe – feeling that you miss social etiquette or rules that others take for granted, such as offending people when asked for an opinion, carefully correcting people or talking over them, all of which seems to cause tension. These examples apply to work situations, family life, friendships and romantic relationships.
Those with ASD are more vulnerable to mental health problems, including depression, anxiety, OCD (obsessive compulsive disorder) and ADHD (attention deficit hyperactivity disorder), but they are also less likely to seek medical help.
How is it diagnosed?
If you suspect you may have autism, book an appointment with your doctor, who will ask about your concerns and symptoms. You may have family, partners or employers who have made observations, adding to the clinical picture. You may be asked to complete a questionnaire, which helps identify those that would benefit from further assessment.
If your doctor feels a diagnosis of ASD is possible, they will refer you to a psychiatrist or specialist autism team to conduct a more in-depth assessment. There is no specific test for autism, it’s a process of assessment and clinical opinion. By nature of a spectrum, it covers a wide array of presentations and difficulties.
How can I help myself?
Before you embark on a process of seeking assessment, think about what you wish to gain from any diagnosis. Will it make things better or worse? Some people feel reassured that they can understand themselves better, that they can put a name to it and find out more. They may even be able to connect with others with autism, and find common experiences and solutions. Your employer, college or university may be able to put certain accommodations in place to help you do your job or studies to the best of your ability. It may help you to access appropriate services and benefits.
Others fear a diagnosis brings stigma that could hold them back in their career or relationships. Or, by focusing on the negatives or deficits of their way of being, looking for things to "fix", this brings a negative outlook on life, when perhaps they feel fairly content or confident in who they are.
Make sure you look after your general health – those with ASD are less likely to consult their doctor, and their general health suffers. People with ASD have a reduced life expectancy of 16 years, even in those with no intellectual disability, although there are multiple causes contributing to this.
What other help is there?
If you are diagnosed, your specific needs will be assessed by the specialist autism team, and they will liaise with your usual doctor. Together they aim to look after your personal, social and emotional wellbeing, as well as your physical health. Ongoing clinical involvement is provided depending on needs, but your doctor will review you at least once a year and get updates from your local autism team.
Your team will look to offer psychosocial interventions such as programmes to improve social interaction or anger management, and or to improve employment prospects. Mental health disorders such as anxiety, depression and obsessive compulsive disorder should be addressed.
The National Autistic Society is one of a number of charities providing information, advice and support for those with ASD, and for their families or carers. It offers information on benefits and community care services, plus local ASD support groups.
- Written by Dr Caroline Meehan, editor of Healthwords's Digital Health Content and a practising GP
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