Here you can find information about diagnosis for adults who are autistic, or think they may be autistic. There are many online 'autism tests' available, but none of these can guarantee accuracy. Find out about support available before diagnosis, the benefits of diagnosis, how to get diagnosed and the services you may be able to get. 

You can also read our information on what to do after diagnosis.

Am I autistic?

You may be wondering if you are autistic. Perhaps you have read something about autism, or seen a programme on TV, and think that it describes some of your own experiences.

It's quite common for people to have gone through life without an autism diagnosis, feeling that somehow they don't quite fit in. Many people learn to cope with life in their own ways, although this can be hard work. They might be married or living with a partner, have families or successful careers. Others may be more isolated and find things much more of a struggle.

It is up to you whether you decide to seek a diagnosis and some people are happy to remain self-diagnosed. The only way to know for sure whether you are autistic is to get a formal diagnosis.

Read about some experiences of diagnosis.

Your right to support before getting a diagnosis

Getting benefits and support is supposed to be based on what a person appears to need, not what diagnosis they have. So you can apply for this regardless of whether or not you have been diagnosed as autistic. You may be entitled to:  

Benefits of a diagnosis

Some people see a formal diagnosis as an unhelpful label, but for many, getting a timely and thorough assessment and diagnosis may be helpful because:

  • it may help you (and your family, partner, employer, colleagues and friends) to understand why you may experience certain difficulties and what you can do about them
  • it may correct a previous misdiagnosis (such as schizophrenia), and mean that any mental health problems can be better addressed (however, it can be difficult to make a diagnosis of autism if you have severe mental health issues, or if you are having treatment
  • it may help you to get access to appropriate services and benefits
  • you will be entitled to have reasonable adjustments made by your employer, college or university
  • it may help women, and those with a demand avoidant profile, who may not before have been recognised as autistic by others
  • you can join the autism community – you don't need to be diagnosed to join our online community or subscribe to our Asperger United magazine, but you might need a diagnosis to join some social groups.

Although you don’t need to be diagnosed to have self-belief, some autistic people welcome the diagnosis as a way of making sense of their life experiences and being able to identify with other autistic people.

Read about some experiences of diagnosis and find local autism support groups.

Getting a diagnosis – the process

Autism (including Asperger syndrome) varies widely from person to person, so making a diagnosis can be difficult. A diagnosis – the formal identification of autism – is therefore best made by a multi-disciplinary diagnostic team.

Some diagnostic teams accept self-referrals, but in most areas, you will need a referral from your GP. If you are seeing a different health professional for other reasons (for example, a psychologist if you have depression), you could ask them for a referral instead.

Step 1: speak to your GP

Book an appointment with your GP. Make sure your diagnosis is the only thing you are seeing your GP about. If you try to mention it during a consultation about another subject, your GP may not address it fully.

Step 2: present your case

Your GP needs a reason to refer you for diagnosis, so you will have to explain why you think you could be autistic, and how a diagnosis would benefit you. If you think you might want help with this, ask someone you know to come with you.

Explaining your situation

You could say that you've been reading about autism, or that you've been in touch with The National Autistic Society. You could say that you think you experience some of the difficulties people on the autism spectrum can face, and you would like to seek a formal assessment to be sure. Try to give your GP some examples of difficulties you've had in adulthood and childhood with communication, social interaction, sensory difficulties, friendships or employment, and the need for routine, and how much you think these affect the different areas of your life.

Your GP’s responsibilities

Not all GPs will have an in-depth knowledge of autism, so it's important to explain things as clearly as you can. You could take along a copy of our guidance for GPs, and tell your GP about the relevant guidelines on autism recognition and referral that should guide their decision to make a referral.

In England, your GP should be following NICE guideline 142 and be aware of the statutory guidance requiring a clear diagnosis pathway for adults.

In Northern Ireland, your GP should be following NICE guideline 142 and be aware of the Northern Ireland Autism Strategy and Action Plan.

In Wales, your GP should be following NICE guideline 142 and be aware of the Autistic Spectrum Disorder Strategic Action Plan.

In Scotland, your GP should be following SIGN guideline 145 and be aware of the Scottish Strategy for Autism.

Step 3: getting a referral

If your GP agrees to refer you, we recommend that you tell them about local services which have experience of multidisciplinary diagnosis of autism in adults. Print out the details of diagnostic services in your area and take them with you.

If it isn't possible to refer you to a multidisciplinary team, you could be referred to an individual professional, such as a psychiatrist or clinical psychologist. This professional should be experienced in diagnosing autism, as this will mean 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 that it can sometimes be hard to find a service or professional with experience of diagnosing autism in adults.

Once you have been referred, there is no more involvement from your GP.

Where will I be referred to?

You are most likely to be referred to a diagnostic service (such as a clinic or assessment centre) in your local Clinical Commissioning Group area (in England), your Health Board area (in Scotland), your Local Health Board area (in Wales), or your Health and Social Care Trust area (in Northern Ireland). You can be referred to a service outside your area, but as this costs more, your local NHS commissioning body 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 and will insist upon you having an NHS diagnosis, too.

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. You could ask to see another GP at the surgery.

If you want to complain about the referral or the diagnostic service you received, you can make a complaint.

Step 4: the diagnostic assessment

Most adults see a psychiatrist, clinical psychologist or multi-disciplinary team for their diagnosis. Waiting times vary. You can take someone with you when you go for a diagnosis if you like.

The team or professional might ask you to bring an ‘informant’ with you – someone who knew you as a child, such as one of your parents or an older sibling. This is because they may be able to give important information about your childhood.

A diagnosis is not a medical examination. You don't need to be examined physically and shouldn't be asked for any samples, such as blood.

How will they determine that I am autistic?

The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests (this includes sensory behaviour), since early childhood, to the extent that these 'limit and impair everyday functioning'.

There are several 'diagnostic tools' available, and diagnosticians aren't obliged to use a specific tool. The tool is likely to involve a series of questions about your developmental history from when you were a young child (for example, about language, play and cognition).

When will they tell me the result?

The diagnostician will tell you whether or not they think you are autistic. They might do this on the day of the assessment, by phone on a later date, or in a written report that they send to you in the post.

The report may say that you present a particular autism profile, such as an Asperger syndrome or demand avoidant profile. Diagnostic reports can be difficult to read and understand in places. You can call the diagnostician to talk through any parts of the report that you find unclear.

Find out more about autism profiles, and diagnostic criteria, tools, and manuals.

Step 5: coming to terms with the results

If you are told you are not autistic

Sometimes people are told they aren't autistic, and sometimes they may be given a diagnosis they don't agree with.

You can seek a second opinion, which either means going back to your GP to explain that you aren't happy with your diagnosis and ask them to refer you elsewhere, or paying for a private assessment.

If you go for a second assessment, remember that it may reach the same conclusion as your first.

If you get an autism diagnosis

If you are diagnosed as autistic, you may have a lot of questions. You might be wondering how you can find out more about your condition, meet other autistic people, or access services and support.

Post-diagnostic support is important. Some diagnostic teams and professionals offer follow-up services after diagnosis and might be able to answer your questions and point you towards support services. However, not all do this.

Support does not automatically follow diagnosis, but having a formal diagnosis does mean that you are more likely to be able to access services and claim any benefits you are entitled to. Not everyone feels they need further support – for some people, simply getting a diagnosis seems to be enough.

Spectrum Live - autism diagnosis

Spectrum Live is our interactive live stream event that you can access for free, from the comfort of your own home. Watch the below episode of Spectrum Live which is all about autism diagnosis.

To find out what we'll be discussing at our next event, please visit Spectrum Live.

What next?

Last reviewed 30 August 2016