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What happens during an autism assessment

An autism assessment will consider experiences, strengths, challenges and needs to draw a conclusion as to whether you or your child are autistic. This page considers the processes involved in an autism assessment including parts of the assessment and how you will find out the results.

What is an autism assessment?

An autism assessment is a process of gathering information about you or your child. The professionals conducting the assessment will seek to understand a broad range of information about you or your child to help them to reach a conclusion about whether you or your child is autistic or not. As part of the assessment they should also identify the type of support needed. The questions asked by the professionals in the assessment team are to gain important information and there are no correct and incorrect answers. 

Practice varies across the UK. Sometimes an assessment is completed over several appointments. The specialist team may need to make observations in different settings, for example at school, home and at an assessment centre.  In some cases, the assessment team may seek information prior to the assessment appointment, for example checklists or questionnaires. (for more information about this, visit the section What is a screening questionnaire? on our page What can I do while waiting for an autism assessment?). Some services may also include online appointments or a combination of online and in-person sessions.  

The assessment will be carried out by a specialist team of professionals. It is likely that the team will introduce themselves and explain the purpose of the session before they start gathering information from you or your child. The team carrying out the assessment should regularly check that you understand the information provided and know what to expect. Young people should also be supported to understand the information being provided.  

Reasonable adjustments can be requested to accommodate your or your child’s needs, for example, identifying communication preferences or sensory needs and adapting the environment and communication style to make the assessment more accessible.
 

Our Clinical Director on requesting reasonable adjustments

Resource: Template letter to request adjustments

You can adapt this letter template and send it to your autism assessment provider to request reasonable adjustments for your appointments. 

View the template letter

Our Clinical Director explains what happens in an autism assessment

What information will the assessment team need?

The specialist team need to gain information that can be matched against the core characteristics of autism outlined in the diagnostic manuals as the criteria for an autism diagnosis. They will need to understand current circumstances as well as gain information about the historical context, for example, early development history, family history and medical history. 

Information about challenges you or your child experience in everyday life is needed to help identify evidence to support any clinical observations or formal assessments. 

There specialist team should follow guidelines from the National Institute for Health and Care Excellence (NICE) guidelines in England, Wales and Northern Ireland and the Scottish Intercollegiate Guidelines Network (SIGN) in Scotland. 

The assessment process typically involves gathering information about:

  • early developmental history from someone that knew you well as a child (for example a parent or sibling), if this is available
  • family history including significant life events that may affect the person’s reactions and behaviour
  • any past and current physical and mental health conditions
  • any other neurodevelopmental diagnoses (for example ADHD and learning differences and disabilities)
  • experiences in daily life, including relationships, at home, in education and employment
  • communication and social interaction experiences
  • behaviours, interests and attention to detail
  • sensory differences, including sensory sensitivity
  • areas of particular strength.

A person’s age will be considered during the assessment process, including whether they consent to the assessment. People over the age of 16 can consent to their own treatment including an autism assessment, unless there is evidence to suggest they do not have the capacity to decide on their treatment. 

Children under 16 can consent if they are considered to understand what’s involved in their assessment. If a young person is considered unable to understand their treatment, someone with parental authority can act on their behalf. Further information can be found on the NHS website.
 

How will the information be assessed?

An autism diagnosis must be based on information from a variety of sources. This information is used by the specialist team to make clinical judgements based on the diagnostic criteria. Although the assessment process may vary there are key components that are essential; these are:
 

Gathering a history 

An understanding of your or your child’s history is important to provide context and build up a picture of the person. 

A clinical history for you or your child should aim to include: 

  • an account of your development as a child, or your child’s development
  • a full medical history including past and current physical and mental health conditions
  • current challenges being faced in relationships, at home, in education or employment
  • signs of any characteristics consistent with the criteria of autism outlined in diagnostic manuals
  • family history including any social communication and interaction differences, behaviour or sensory differences, mental health conditions, learning disability, epilepsy, neurological conditions or addictions
  • descriptions from family members including evidence of significant life events which may have had an impact on the person’s behaviour or reactions. 

A developmental history can be gained from anyone who knew you well as a child (with your consent), or, for children, it can be provided by parents or carers. For children who are looked after in the care system, information about their early development may not be available. This should not be a barrier to an assessment being carried out. 

If you are an adult attending an autism assessment most information will be provided by you, although it may be helpful to consider information from others who know you well, including family members or carers, partners, employers or colleagues, with your consent. If you are attending with your child then you (and your child) will provide the necessary information, but you may also want or be asked to share opinions from teaching and nursery staff and child psychologists, as relevant.
 

Direct observation 

The professionals in the assessment team will be informally observing you or your child during your time with them. This will provide them with additional opinions to supplement the information that you have provided. They will be trained and well placed to identify evidence of the core characteristics of autism. For observations of children, it may be necessary to carry out observations in different settings, for example in the clinic, at home and in school. 


Skills assessments or tests 

To help specialists identify your or your child’s strengths and challenges to help create a needs-based plan, detailed assessments will be carried out to profile specific skills: 

  • language, communication and social interaction
  • motor (movement) and sensory (senses)
  • cognitive (thinking).
     

Co-occurring conditions 

The assessment should seek to identify signs of potential co-occurring conditions that may require further assessment and tailored support. Co-occurring conditions may include (but are not limited to): 

  • Attention Deficit Hyperactivity Disorder (ADHD)
  • learning differences and/or disabilities
  • mental health conditions, including Obsessive Compulsive Disorder (OCD)
  • epilepsy
  • hearing or visual impairments or other physical conditions. 
     

Medical investigations 

For children and young people, National Institute for Health and Care Excellence (NICE) state that autism assessments should include a general physical examination. In Scotland, Scottish Intercollegiate Guidelines Network (SIGN) recommend that a physical examination should be considered but it is not required.  

For further information about the type of physical examination that may be involved, you may wish to contact the specialist team carrying out the assessment.


Assessment of risk of harm 

Any clinical assessment must consider whether the person is at any risk of harm. This includes an assessment of: 

  • self-harm or self-neglect
  • exploitation or abuse by others
  • harm to others
  • breakdown of support at home (for example through family or relationship breakdown, housing or residential care issues). 

If any risk is identified, a risk management plan must be developed.  

Assessment should include the identification of the triggers or reasons for any distressed behaviour including physical and mental health conditions, the environment, changes to routine or circumstance, and communication differences. 
 

Important considerations for clinicians 

Specialists should not exclude the possibility that a person is autistic because of stereotypical characteristics not being evident or if a previous assessment concluded they were not autistic. Advice should be sought from other colleagues if in any doubt. Many people don’t have a stereotypical presentation of autism, for example: 

  • people who mask
  • some women and girls
  • older people
  • some people from minority ethnic groups
  • those with hidden or low support needs
  • some people with co-occurring conditions.

In some cases, a team with more specialist experience may be needed to carry out the assessment.
 

Assessment results and report

How the conclusions from the assessment are fed back to you will vary from team to team. It is most likely that, once the assessment is complete and all the information has been analysed, one or more of the assessment team will meet with the you, and/or a child or young person’s parents or carers, to explain their findings. A written report should follow which outlines what information has been gathered, the results of the assessment and the reasons for the conclusions. 

Reports can be difficult to understand; if you don’t understand the language or the meaning of terms used, you can contact the assessment team for clarification. 

The report may be provided in person by the specialist team or sent to you by post. A copy of the report will also be sent to your GP. A copy can also be sent to other professionals if you consent to this, for example it could be sent to the team caring for you to provide an understanding of your care needs or it can be sent to education professionals to help understand your child or young person’s educational needs. 

A plan detailing the type of support you need should also be provided. You can find out more about this on our Formal support following an autism diagnosis page. 

If you disagree with the outcome of the assessment, you may want to raise your concerns directly with the team of professionals who assessed you. You can consider requesting a second opinion by going to your GP if you have had an assessment through the NHS.  

It may also be possible to pay for an independent assessment. You can find out more about independent assessments on our How to request an autism assessment page.  

If you still have concerns about the outcome, there may be further action you can take. You can find information about this on our page What to do if formal support is not offered or provided.

 

Our Clinical Director explains what the assessment feedback and report should cover 

Visit the video playlist to find answers to related questions, including What if I don’t agree with what’s written on the report? and How do I get a second opinion if I’m not happy with my first assessment?

Links, resources and article sources

Related advice and support

Criteria and tools used in an autism assessment

Read more

Professionals involved in an autism assessment

Read more

What can I do while waiting for an autism assessment?

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

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