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Deciding whether to seek an autism assessment

Having an autism assessment can help people understand themselves better. An autism diagnosis can provide a person with clarity and access to support. However, many people face barriers to receiving an autism assessment. This page provides an overview of why you may wish to seek a formal diagnosis, why some people may not and explores support that may be available without a diagnosis.

What are the benefits of receiving an autism assessment?

The only way to know for sure whether you are, or your child is, autistic is to have a formal autism assessment. 

A formal assessment for autism is important because it can: 

  • help you to make sense of why you felt ‘different’ at a young age but, at the time, had no explanation as to why
  • provide an understanding as to why autistic characteristics and autism-related challenges have become more apparent
  • provide clarity about recognising signs that you may be autistic, following your child receiving an autism diagnosis
  • provide an understanding of a stressful life event (e.g. relationship breakdown, loss of a job, mental health crisis, etc.)
  • confirm you are autistic to anyone who may have been sceptical
  • help you access support that meets your needs, such as reasonable adjustments at work or access to social care and benefits
  • help you (and your family, partner, employer, colleagues and friends) to understand why you may experience certain challenges and how you can be supported to manage them
  • empower you to self-advocate due to understanding yourself and your needs better 
  • you may feel more comfortable accessing peer support from the autistic community
  • increase understanding and reduce judgment from others. 

Parents may also decide to seek an assessment for their child to gain: 

  • a better understanding of your child so you can learn how to support them better
  • an explanation for some of the challenges you and your child face
  • confirmation that your child’s autism characteristics are not related to your parenting or the fault of the child
  • a better understanding and less judgment from others
  • a community that can support you and your child, by connecting with others with similar experiences
  • access to the formal support you and your child need. 

What is self-identification?

People may recognise that they might be autistic, or a loved one may suggest they are. Whilst waiting for an assessment some may choose to self-identify as autistic. Others may choose not to seek an assessment but to continue to self-identify. ‘Self-diagnosis', 'self-identification', or 'self-ID' are all terms used when an individual identifies themselves as being autistic without having a formal clinical diagnosis.

Many in the autistic community are generally accepting of self-identification, acknowledging that it is a personal choice whether someone wants to seek a diagnosis and that many people can face barriers to getting a diagnosis.  

People report that identifying as autistic before or instead of having a formal diagnosis has had a positive effect on their lives. Some reasons they choose to ‘self-identify’ include that it can: 

  • help you to adjust and arrange support whilst awaiting a formal diagnosis
  • it doesn’t present the same barriers as formal diagnosis (such as waiting times and getting a referral)
  • allow you to learn about yourself 
  • help you access informal support (from family, friends, partners and colleagues and informal peer support such as online forums or local groups for autistic people)
  • some people feel that a formal diagnosis may make it harder to live their lives, for example, by restricting job choices such as joining the armed forces or facing potential stigma and discrimination (although you don’t usually need to tell people about an autism diagnosis if you don't want to). 

Reasons people choose not to self-identify and decide to seek an assessment so that: 

  • they can be certain of their autism diagnosis   
  • they have their challenges and needs recognised through a formal assessment 
  • they can share their experiences with other autistic people 
  • they feel their autistic identify is valid in society 
  • avoid the stigma that they have just chosen to follow a trend of being autistic  
  • their self-identification isn’t just something that is based on poor research and misconceptions  
  • avoid misdiagnosis and check that there are no other reasons for their challenges and may need different support 
  • it could lead to unfair treatment of individuals just for being different. 

Deciding whether to find out more about autism and whether you want an assessment depends on the person, their circumstances and their expectations. Hearing from other people what they decided to do can help inform your decision.

Insight from autistic people

"When you have been told your whole life that you’re too sensitive, you’re too shy, why are you so weird? Why are you like that? You’re this, you’re that, it can be really powerful to say, especially to doctors, 'No, I’m none of these things. I’m autistic.' " 

– Yo Samdy Sam, Getting an adult autism diagnosis – is it worth it?

"There are a number of reasons that an adult might want to seek out a diagnosis by a professional… I needed to know that it wasn’t ‘all in my head’ and getting a diagnosis by a professional seemed like the most conclusive way to do that."

– Cynthia Kim, Adult ASD: seeking a professional diagnosis

"Self-diagnosis, at its core, is all about recognising our own neurodivergence and reclaiming our role as the experts in our own lives. Understandably, there are limitations to what we can do with a self-diagnosis. ... Self-diagnosis does, however, give us better access to that autistic community support."

–  Solveig Standal, The importance and power of autistic self-diagnosis

How can I find out more to help me decide whether to seek a diagnosis?

Before approaching a medical professional to discuss the possibility that you or your child is autistic, you may want to find out more about autism by doing some research.   

Research tips from autistic people and their family members include:

  • make sure information is relevant to your context (for example, age, gender, ethnicity) 
  • access good quality sources (for example, other autistic people, national organisations such as the National Autistic Society, or the NHS) 
  • consider that the DSM and ICD diagnostic criteria are potentially valuable sources of information  
  • be mindful of misconceptions, stereotypes and organisations that provide unreliable information about autism 
  • record the findings of the information gathering, especially if considering seeking a formal autism diagnosis 
  • research the diagnostic process 
  • take time over a decision; it can be emotionally overwhelming to process the realisation that you/your child might be autistic
  • keep a diary or written record of the behaviours, signs and/or concerns identified, which you can then share with professionals 
  • speak to relevant professionals (e.g. teachers, academic advisors, medical professionals) to determine whether they have also noticed signs that you might be autistic.

Be aware that not all information and media about autism is reliable and evidence based. You should be particularly wary of any source that talks about how to ‘cure’ or ‘treat’ autism, which is not possible and so the source is likely to be unreliable. Read more about this issue on our Strategies and interventions page.
 

What are screening tools for autism?

'Screening tools' are questionnaires that aim to indicate whether someone is likely to be autistic. They include questions about typical signs and challenges autistic people can experience. Some people find pre-diagnostic questionnaires useful to help them explore whether they may be autistic, and they can be used to gather information that informs the referral process.  

These screening tools are not medical diagnoses, and they may not be accurate. Results can vary between tools, and the scoring can be hard to interpret. Some people may find them difficult to understand.  

Pre-diagnosis questionnaires are widely available online and include:

If you have carried out a screening test and it indicated that either you or your child could be autistic, you may decide to consider making a GP appointment to discuss how to request an autism assessment.
 

Is a diagnosis needed to access support?

Accessing support may not always require a diagnosis; this depends on the type of support that is needed. Support can be provided by professionals, charities, local authorities, health and social care trusts and the person’s family, friends, partner or colleagues.  A diagnosis report can provide an indication of the type of support you or your child may need. 

This section lists the areas of life where support may be needed whilst waiting for an autism assessment and doesn’t rely on having a formal autism diagnosis. Evidence of the difficulties a person is experiencing may be required to access this support. The support will depend on the needs of the individual, their age and the support they currently access.  
 

Education

If a child or young person needs support in school, they can request that their educational needs be assessed. This will help identify the type of extra support required to help them learn and support their well-being. Throughout the UK, there is no requirement for a child or young person to have a diagnosis to be assessed to receive extra help in school.  

The process for identifying a child or young person’s educational needs varies throughout the UK. Information about this can be found in our Extra help at school section, which includes pages specific to each UK nation. 

If you are attending or plan to attend college, university or an alternative training placement, there may be support that can be provided. You should contact the department responsible for supporting students to find out more.
 

Health 

Health services including mental health support should be provided by your local health service and will vary greatly depending on the needs you have or the needs of your child.  

The contact details for your local health services can be found on the NHS webpage for your nation: 

You can also visit our advice pages on physical health and mental health.
 

Social care

Social care provides support for day-to-day living. There isn't a requirement to have a formal diagnosis to access a social care assessment. An assessment is needed to identify a person's social care needs. Once the assessment is completed, local authorities or Health and Social Care Trusts have duties to provide the support identified as needed. Assessments should be provided for children, young people, adults and carers with an apparent need.

The process for requesting an assessment varies throughout the UK. Our social care web pages provide further information about requesting social care assessments in your area. 
 

Benefits and financial support

A formal diagnosis isn’t always necessary to access certain disability-related benefits in the UK. Because we’re talking about legislation, we’ll sometimes use ‘disabled’ as a general term that includes autism, because autism is considered a disability in UK equality law.

Eligibility for benefits is based on assessing the impact of a disability on daily life. In England, Wales and Northern Ireland, there are several types of benefits available depending on a person's age:  

In Scotland, there are:

Other benefits may be claimed in addition to those available for those with disabilities. You can read more about the benefits available on our page Benefits you can get.
 

Peer Support  

Other sources of support may be available in addition to formal support from education, social care and the welfare system; this is sometimes referred to as peer support. 

There are many online and local support groups throughout the UK; some of these are listed in our Autism Services Directory. The type of groups available varies between different locations.  

We have volunteer-led branches across the UK that provide support, information and social activities for autistic adults, children and their families in their local area. We also have online Branches for autistic people with a shared interest, identity or experience.  To find out more about what the branch in your area provides, you may like to contact them directly.   

Our Online Community is a virtual space for autistic people, their families, and those who work with them to ask questions, support one another and discuss the issues and experiences that are important to them.
 

Support for families and partners 

Families and partners may also need some support before their family member receives a diagnosis, or if they are not referred for an assessment or the outcome is that their family member is not given an autism diagnosis. 

There are many local groups for parents and carers throughout the UK, some of them are listed in our Autism Services Directory. The types of groups available varies between locations. 

We have volunteer-led Branches across the UK that provide support, information and social activities for the families of autistic children and adults in their local area.   

Our Online Community has a specific forum where parents and carers can discuss their experiences, ask questions and support one another. 

Our Parent to Parent Emotional Support Helpline provides emotional support to parents and carers regarding their autistic children, including grown-up children. The service is provided by trained parent volunteers who offer telephone support from their homes.

Please note that a formal diagnosis is not required to access peer support provided by the National Autistic Society.

Links, resources and article sources

Related advice and support

Signs that a child or adult may be autistic

Read more

How to request an autism assessment

Read more

How to bring up that you think someone may be autistic

Read more

Related videos
 

Dr Sarah Lister Brook. Clinical Director, National Autistic Society

Expert Q&A with Dr Sarah Lister Brook

Our Clinical Director answers common questions about autism assessment and diagnosis in this YouTube playlist.

View on YouTube

My diagnosis story: Finty

Our Young Ambassador shares her experience of autism assessment and diagnosis.

Watch the video

Related services
 

Online Community

Our online community is a place for autistic people and their families to meet like-minded people and share their experiences.

Join the community

Diagnostic services

Our specialist diagnostic and assessment service for children, young people and adults.

Autism assessments

Autism Services Directory

The UK’s most comprehensive directory of services and support for autistic people, their families, and the people who work with them.

Search the Directory

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