Getting a diagnosis of autism (including Asperger syndrome) 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 can be difficult for adults. This guide aims to help: the first step is to talk to your GP and ask for a referral.
Step 1: speak to your GP
To get a diagnosis you should first visit your GP and ask for a referral to a psychiatrist or clinical psychologist, preferably one with experience of diagnosing autism.
Make sure your diagnosis is the only thing you are seeing your GP about. If you try and mention it during a consultation about another subject, your GP may not address it fully.
Your GP needs a reason to refer you for diagnosis, so you may need to explain why you think you could have autism, and how a diagnosis would benefit you. If you think you might want a bit of help with this, ask someone you know to come with you.
You might say that you have been reading about autism, or that you've been in touch with The National Autistic Society (NAS). You think that you experience some of the difficulties that people with autism can face, and you would like to seek a formal diagnosis to be sure.
Below, we summarise the main difficulties that people with autism experience - you can discuss some of these with your GP (see 'Step 2: presenting your case').
Not all GPs will have an in-depth knowledge of autism, so it's important to explain things as clearly as you can. We have written a helpful guide for GPs which you can download from www.autism.org.uk/gpaspergerguide Our website also has useful information about diagnosis for professionals: www.autism.org.uk/diagnosisguide
If you are seeing a different health professional for other reasons (for example, a psychologist if you have depression) you might prefer to ask them for a referral instead.
Step 2: presenting your case
Autism is characterised by three main areas of difficulty and if you have autism, you'll be affected in some way in each of these areas. However, everyone with autism is different and no one person will have all of the traits listed below. Try to give your GP one good example from each of the three main areas of difficulty.
The three main areas of difficulty
Social communication
People with autism sometimes find it difficult to express themselves emotionally and socially. To give some examples, you may:
- have difficulty understanding other people’s gestures, facial expressions or tone of voice
- be unsure about when to start or end a conversation, or how to choose topics to talk about
- talk or read very fluently but not fully understand the meaning of some of the more complex words and phrases you use
- be very literal yourself and sometimes struggle with jokes, metaphors, sarcasm or common turns of phrase, such as 'She nearly bit my head off'.
Social interaction
Plenty of people with autism want to be sociable and make friends, but often say they're unsure how to go about this. Socialising can be difficult and may cause considerable anxiety. To give some examples, you may:
- find it hard to make and maintain friendships
- find other people unpredictable or confusing
- not always understand the unwritten 'social rules' that other people just seem to know. How close do you stand to another person? How do you know what's an appropriate topic of conversation?
- be unsure how to behave in different social situations, and worry about getting things wrong.
Social imagination
People with autism have difficulty with social imagination. To give some examples, you may:
- find it hard to understand or interpret other people's thoughts, feelings or actions - and therefore to understand their intentions or to predict what they're going to do next
- not always be comfortable with the idea of change, and prefer to stick to a routine
- enjoy carrying out particular activities, or learning about certain topics, which as well as being enjoyable you may find really beneficial. Perhaps they help you to relax, or to deal with anxiety.
It's important to add that many people with autism are imaginative (for example, they are accomplished writers, artists and musicians). If you're quite creative, this shouldn't automatically be taken as a sign that you do not have autism.
Related characteristics and conditions
As well as the three main areas of difficulty, you may find you have some of the following characteristics or conditions, which are quite common in people with autism. You should tell your GP about these, too.
Sensory difficulties
Sensory difficulties can affect all seven senses: sight, sound, smell, touch, taste, balance ('vestibular') and body awareness ('proprioception').
You might find that you are either over-sensitive or under-sensitive to different stimuli. For example, you might be averse to bright lights, loud noises, some smells, particular food textures or the feeling of certain materials. Any of these could cause anxiety, possibly even pain.
You may also find it harder to use your balance and body awareness systems, which let us know how we're moving and where our bodies are in space. So you might find it harder to navigate rooms avoiding obstructions, or go up and down stairs. You might also find that repetitive activities such as rocking, hand-flapping and spinning (which many people with autism do) help your balance and posture.
Love of routines
In an effort to make the world less confusing, you may have rules and rituals (ways of doing things) that you insist upon. You might also have a strong preference for routine, and find it difficult to cope with change if you haven't been able to prepare for it in advance. For example, an unexpected delay to your journey to or from work might make you feel anxious or upset.
Special interests
People with autism may develop an intense interest in a particular subject or activity. Interests can change over time or be lifelong. Practically everyone has interests or hobbies but you may find that your interests are very strong, and that possibly you aren't especially interested in learning or talking about other things.
Mental health difficulties
Some of the more common mental health difficulties that people with autism can experience are anxiety and depression. A related issue is self-injurious behaviour, such as hitting or cutting yourself. Mental health difficulties can be addressed, and often more successfully if professionals know that a person also has autism, so it's important to discuss this with your GP.
Other conditions
Some people with autism also have learning disabilities, or specific learning difficulties such as dyslexia. Other people have conditions such as epilepsy. You may not have any of these conditions but if you do, it's helpful to describe them to support your case.
Step 3: getting a referral
If your GP agrees to refer you, we recommend that you tell them about local services that have experience of diagnosing autism.
As an adult seeking a diagnosis, we think it's really important that you are referred to the right person, or service, first time round. You are more likely to be accurately assessed, and will avoid having to go back to your GP to ask for a second referral. Be aware, though, that it can sometimes be hard to find a service or professional with experience of diagnosing autism in adults.
You can search for diagnostic services in your area online at www.autism.org.uk/directory (print details out and take them with you), or by calling our Autism Helpline, who can search for you. Tel: 0808 800 4104 (open Monday-Friday, 10am-4pm), calls are free from landlines and most mobiles.
Once you have been referred, there is no more involvement from your GP.
You are most likely to be referred to a local diagnostic service - that is, within the area that your local primary care trust (PCT) covers. Most adults see a psychiatrist or a clinical psychologist, although this does vary. Waiting times also vary.
You can be referred to a service outside your local PCT area but as this costs more, your PCT might question why you need to go there, or whether you really need a diagnosis. Private diagnosis is always an option, if you can pay for one, but you may occasionally find that local service providers (for example, social services) will not accept private diagnoses. They will insist upon you having an NHS diagnosis, too.
If you wish to complain about any aspect of referral or diagnosis, there is a complaints procedure that you can follow. See Local authority and NHS complaints procedure on our website, or call our Autism Helpline on 0808 800 4104 to ask for a printed copy.
What if my GP does not refer me?
If your GP decides not to refer you for a diagnosis, 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.
There is a complaints procedure you can follow. See Local authority and NHS complaints procedure on our website, or call our Autism Helpline on 0808 800 4104 to ask for a printed copy.
What next?
See Diagnosis: what to expect for an idea of what might happen when you go for a diagnosis.