This information is about the process of getting a diagnosis of an autism spectrum disorder. You can find more information about the autism spectrum at www.autism.org.uk/aboutasds
Getting a diagnosis of autism, or an autism spectrum disorder (ASD), can be a really positive thing. A lot of people say their diagnosis has helped them to understand why they have difficulties with some things and why they are especially good at some things.
Having a diagnosis also means you can get easier access to support and benefits. However, the process of getting a diagnosis may not be easy. This guide will help you present your case to your GP and explain why having a diagnosis could be helpful for you.
You may receive a diagnosis of autism, autism spectrum disorder (ASD), pervasive developmental disorder – not otherwise specified (PDD-NOS), atypical autism, Asperger syndrome or another related condition. These conditions are collectively called the autism spectrum. We use the term autism to cover all these conditions, and use the term Asperger syndrome to include all forms of high-functioning autism.
Ways to bring up the subject with your doctor
The typical route to getting diagnosed is to visit your GP and ask for a referral to a psychiatrist or clinical psychologist, preferably one with experience of diagnosing autism. If you are already seeing a specialist for other reasons (eg a psychologist if you suffer from depression) you might prefer to ask that specialist for a referral instead.
Make sure your diagnosis is the only thing you are seeing your doctor about. If you try and mention it during a consultation about another subject, the doctor may not address it fully. A good way to mention it is to say you have been reading about autism and/or you have been in touch with The National Autistic Society. You can then explain why this is relevant to you.
Three main areas of difficulty
Autism is characterised by three main areas of difficulty. People with autism are affected in some way in each of these three areas, but no one person will have all of the traits listed. The autism spectrum is very broad and two people on the spectrum may be very different.
People with autism sometimes find it difficult to express themselves emotionally and socially. For example, they may:
- have difficulty understanding gestures, facial expressions or tone of voice
- have difficulty knowing when to start or end a conversation and choosing topics to talk about
- use complex words and phrases but may not fully understand what they mean
- be very literal in what they say and can have difficulty understanding jokes, metaphor and sarcasm. For example, a person with autism may be confused by the phrase 'That's cool' when people use it to say something is good.
Lots of people with autism want to be sociable but have difficulty with initiating and sustaining social relationships, which can make them very anxious. People with the condition may:
- struggle to make and maintain friendships
- not understand the unwritten 'social rules' that most of us pick up without thinking. For example, they may stand too close to another person, or start an inappropriate topic of conversation
- find other people unpredictable and confusing
- become withdrawn and seem uninterested in other people, appearing almost aloof
- behave in what may seem an inappropriate manner.
People with autism can be imaginative in the conventional use of the word. For example, many are accomplished writers, artists and musicians. But people with autism can have difficulty with social imagination. This can include:
- imagining alternative outcomes to situations and finding it hard to predict what will happen next
- understanding or interpreting other people's thoughts, feelings or actions. The subtle messages that are put across by facial expression and body language are often missed
- having a limited range of imaginative activities, which can be pursued rigidly and repetitively, eg lining up toys or collecting and organising things related to his or her interest.
Other characteristics of autism
As well as the three main areas of difficulty, people with autism usually have sensory difficulties and often have a love of routines and special interests.
These can occur in one or all of the senses (sight, sound, smell, touch, or taste). The degree of difficulty varies from one individual to another. Most commonly, an individual's senses are either intensified (over-sensitive) or underdeveloped (under-sensitive). For example, bright lights, loud noises, overpowering smells, particular food textures and the feeling of certain materials can be a cause of anxiety and pain for people with autism.
People with sensory sensitivity may also find it harder to use their body awareness system. This system tells us where our bodies are, so for those with reduced body awareness, it can be harder to navigate rooms avoiding obstructions, stand at an appropriate distance from other people and carry out 'fine motor' tasks such as tying shoelaces. Some people with autism may rock or spin to help with balance and posture or to help them deal with stress.
Love of routines
To try and make the world less confusing, people with autism may have rules and rituals (ways of doing things) which they insist upon. Young children, for example, may insist on always walking the same way to school. In class, they may get upset if there is a sudden change to the timetable. People with autism often prefer to order their day to a set pattern. For example, if they work set hours, an unexpected delay to their journey to or from work can make them anxious or upset.
People with autism may develop an intense, sometimes obsessive, interest in a hobby or collecting. Sometimes these interests are lifelong; in other cases, one interest is replaced by an unconnected interest. For example, a person with autism may focus on learning all there is to know about trains or computers. Some are exceptionally knowledgeable in their chosen field of interest. With encouragement, interests and skills can be developed so that people with autism can study or work in their favourite subjects.
Mental health difficulties
Often, people with autism suffer from severe anxiety because of the sensory difficulties they experience and because they are trying to operate in a world that can be unpredictable and difficult to understand.
Depression can also be common among people with autism, as their communication and social difficulties often mean they become isolated.
Some people with autism may also have learning difficulties like dyslexia and other conditions like dyspraxia or epilepsy. You may have autism without any of these associated difficulties, but if you do have any of them, it might be helpful to describe them to support your case.
You don't need to describe every single one of these features to your doctor. They are more likely to respond if you give one good example from each of the three main areas. Once you have explained why you think you have autism, you could also show them this web page or the section Diagnosis: information for professionals.
What if the doctor disagrees?
If your doctor disagrees with your argument, ask for the reason why. If you don't feel comfortable discussing their decision then and there, you can ask for a second appointment to talk it through.
Reasons why you might need a diagnosis
Diagnosis in adulthood can be a mixed blessing. Some people decide that they are happy with self diagnosis and decide not to ask for a formal diagnosis. For people that do get a formal diagnosis, there are a variety of benefits.
Lots of the people we speak to have suffered from mental health problems and/or have been misdiagnosed with mental health problems like schizophrenia. They have known that they have specific difficulties for a long time without being able to explain them. A formal diagnosis can be a relief because it allows you to learn about your condition and understand where and why you have difficulties for the first time.
Gaining the understanding of others
So many people suffer the consequences of being constantly misunderstood. Often the fact that someone has autism can lead to teasing, bullying and social isolation. When the people close to you are able to understand that there is a reason for your difficulties, it’s much easier for them to empathise with you.
Finding services to suit your needs
Some adults with autism may need support with day-to-day living (many others have no support needs). But this support may be given by people who don’t understand autism and the specific difficulties associated with it. With a diagnosis, you can get support from autism-specific services like our Prospects Employment Service.
Joining the autism community
It can be helpful to meet other people with autism, to learn about their experiences and share your own. The NAS publishes a newsletter called Asperger United, produced by and for people with autism spectrum conditions. Another good way to contact people with autism is on the internet and you can find out more about useful websites at www.autism.org.uk/library or join the NAS online community at www.autism.org.uk/community You don’t need to have a diagnosis of autism to get this support.
Getting a diagnosis can be difficult and very few adults find it easy. You are the only person who can decide if this is the best choice for you.
Asperger's syndrome for dummies by Georgina Gomez de la Cuesta and James Mason
Available from our online shop: www.autism.org.uk/shop
A GP's guide to adults with Asperger syndrome
Available from our Autism Helpline or at: www.autism.org.uk/gpaspergerguide
Take the AQ test
Quick link to this page: www.autism.org.uk/19491