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What can I do while waiting for an autism assessment?

Waiting times for an autism assessment vary widely across the UK and can be longer than expected, which many people find challenging. This page contains information about waiting times, what you can do to prepare for an assessment while waiting and what support may be available during this time.

How long will I have to wait for an autism assessment?

After a referral for an autism assessment has been made, most people will have a waiting period before the assessment. During this time, the referral will be processed and you may be asked to provide more information and/or complete a screening questionnaire. The assessment team will then advise you on next steps.  

Waiting times vary considerably across the UK and even between neighbouring local authorities. Although there are health authority guidelines around waiting times, in reality the time people wait for an assessment is often much longer than expected. Some people report waiting many months or even years. 

In England and Northern Ireland, to comply with NICE Guidelines waiting times should be no longer than 3 months. In Scotland, waiting times guidance for diagnostic tests are expected to be 18 weeks although it is noted that waiting times may be longer for some people. In Wales, the government action plan proposes a target waiting time between referral and assessment of 26 weeks for children; waiting times for adults should be in line with NICE guidelines.

Current data on waiting times in England from the point of referral to accessing specialist services can be accessed via the NHS Digital’s Autism Waiting Time Statistics webpage. Data on waiting times for diagnostic services in Northern Ireland can be found on the Department of Health NI Autism statistics webpage. Data for Scotland and Wales is not currently available, you may like to contact your local NHS service or integrated care board for further information.

Even once an initial appointment for you to meet the clinician/s has taken place, there may be an additional waiting period before the diagnostic assessment appointment/s; there may also be waiting time between appointments once the assessment has started.  

Waiting for a long time can be extremely stressful for both the individual seeking a diagnosis, their families and those who support them. A long wait for diagnosis may have an impact on the support and interventions available.  

If you or a family member have been waiting longer than expected for an autism assessment, you may wish to contact your GP or the professional that made the referral to ask how long they expect you to wait. In some cases, people may want to consider making a formal complaint – this is an individual choice as there are no set waiting times after which a complaint should be made. There is guidance on how to complain on our page What can I do if formal support is not offered or is not enough?
 

Can I get support while waiting to be assessed?

Because you or your family member may be waiting a long time for an autism assessment, the GP or other professional who made the referral should offer as much support as possible during this time.  

A formal diagnosis is often not required to access support, however this will depend on the kind of support that may be needed. Support can be provided by professionals, charities and local authorities as well as family and friends. 

Through the referral process clinicians and other professionals may suggest: 

  • local support groups or organisations  
  • referring the person to speech and language therapies, where appropriate 
  • referring the person to other diagnostic pathways or mental health services, where appropriate.

Even if help is not offered, it may still be available, and individuals can request support themselves if it is needed. This section lists the areas of life in which support may be needed whilst waiting for an assessment. The help that may be available will depend on the needs of the individual, their age and the support they currently access.

Please note that because we are talking about legislation, in some places we will use the word ‘disabled’ as a general term that includes autistic people, as this is how it is used in UK equality law.

School education 

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

You can read more about what support and/or education plans your child may entitled to by reading our nation-specific information on Extra help at school.  

Further and higher education and employment 

Colleges, universities and employers all have a duty to make ‘reasonable adjustments’ for disabled people. Reasonable adjustments are the legal responsibility to make changes to the way an organisation usually does things in order to prevent disabled people being placed at a disadvantage compared to non-disabled people. This is intended to reduce barriers and increase inclusion.

Autism is generally considered to be a ‘disability’ as defined by the Equality Act 2010 in England, Scotland and Wales and the Disability Discrimination Act 1995 in Northern Ireland. However, a person does not necessarily need a diagnosis to be considered ‘disabled’. What matters is providing support based on individual needs.

You can find more information about this on our page Disability discrimination in further and higher education (GB). Information about disability discrimination in employment can be found on the ACAS website.

Social care 

Social care services provide support for people who need it in their daily lives. To identify the type of needs a person has, a care needs assessment is required. This will usually be carried out by the person’s local social work department. It is not necessary to have a diagnosis to request a social care assessment.

A social care assessment may be arranged by a professional who identifies that support may be needed, or it can be requested by a parent, young person or an adult. The process for requesting an assessment varies throughout the UK.

Following a social care assessment, local authorities have duties to provide the support identified as needed. Assessments should be provided for children, young people, adults and carers with an apparent need. 

Further information about requesting a social care assessment and the type of support that may be available can be found on our social care pages.

Welfare benefits 

A formal diagnosis isn’t necessary to access certain disability-related benefits in the UK although having a diagnosis may simplify the process. Eligibility is based on an assessment of the impact of a disability on daily life and independent living and to cover the extra living costs associated with being disabled.  

In England, Wales and Northern Ireland there are several types of benefits available depending on a person’s age: 

In Scotland, there are: 

In addition to the benefits available for those with disabilities, there may be other benefits that can be claimed. You can read more about the benefits available on our Benefits you can get page.

Peer support 

In addition to formal support in education and employment and through social care and welfare benefits, other informal sources of support may be available. This is sometimes referred to as peer support and is often available to family members, partners, carers and professionals as well as autistic people themselves. Note that peer support groups are often welcoming to people who self-identify as autistic prior to, or instead of, having a formal diagnosis.

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

The National Autistic Society has 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.

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

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

Do I have to prepare anything for the autism assessment?

While waiting for an autism assessment, it can be helpful to prepare evidence that may be considered by the professionals involved in the assessment. Your assessment centre should let you know the kind of information you will need to provide as part of the assessment. If you would like to prepare earlier, you may wish to contact them to ask what kinds of evidence they would like you to provide to help you prepare for the assessment.

For general information about this, visit the What will the assessment consider? section of our page What happens during an autism assessment.
 

Our Clinical director on what you can prepare for an autism assessment

Resource: Preparing for an autism assessment

You can use the resources below to help you identify evidence that could support your assessment and help you consider examples to indicate whether you or your child may be autistic.  

Download: Preparing for an adult autism assessment

 

Download: Preparing for a child or young person’s assessment 

What is a screening questionnaire?

An assessment centre will sometimes send a screening questionnaire to be completed prior to the first assessment appointment. The format of these questionnaires varies but usually includes a checklist or asks questions to help them identify the most suitable assessment pathway. 

These questionnaires may be used as part of the triaging process to decide whether a person needs urgent access to services or whether additional assessments are needed. Processes can vary greatly between different local authorities and health services.

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 happens during 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

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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