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Formal support following an autism diagnosis

The formal support you or your child will be entitled to after a diagnosis will depend on your specific needs. Support from professionals may be available in education, at work, through social care and access to welfare benefits. This page explains the types of support you may be able to access and steps you can take if you or your child aren’t getting the support you need.

Please note: This page contains examples of support, and information about specialist organisations, that comes from our direct experience of helping autistic people and their families, in addition to information based on a review of the evidence as described on Our advice and guidance content process page. The additional resources are presented in purple boxes.

What formal support is available following an autism diagnosis?

Having an autism diagnosis does not mean you are automatically entitled to formal support from professionals. Instead, support is generally based on an assessment of your specific needs in areas such as education, employment, social care and welfare benefits. 

Some autistic people require extensive support across all areas of their life and may already be receiving support before their formal autism diagnosis. Other autistic people may require little or no formal support but can benefit from informal peer and emotional support. 

Information about emotional and peer support for autistic people can be found on our page, How will I feel after receiving an autism diagnosis? Information for family members can be found on our page, Emotional support for family members after a diagnosis. 

This webpage explores formal and professional support in the areas of education, employment, social care and welfare benefits, explaining how to access this support and what to do if you aren’t getting the right support.
 

National guidelines

NICE guidelines in England, Wales and Northern Ireland 

In England, Wales and Northern Ireland, the National Institute for Health and Care Excellence (NICE) guidelines state that following a diagnosis, you or your child should be allocated a named key worker who can work with you to develop a personalised plan. The key worker can be a member of any relevant team, and sometimes may be your GP. 

A personalised plan should be based on an assessment of individual needs, considering strengths, skills, and challenges. It should include your social, health, education and employment needs, and the needs of your family, where relevant. 

According to NICE guidelines, a personalised plan should cover: 

  • any support that the autistic person and their family and carers need following the diagnosis 
  • the most appropriate support in education, employment or housing 
  • action to address the triggers of distressed behaviour 
  • any additional support for identified co-occurring conditions, for example ADHD or Learning Disability.

The plan should also include a risk management plan for people who exhibit distressed behaviour or those with complex needs. For young people under 18, the plan should also include managing the transition from child to adult services. 

Once an autism diagnosis is received, a named key worker (a member of the autism team, primary healthcare team or local community services) should ensure that the person's personalised plan is implemented and reviewed as their circumstances and needs change. The plan should consider any changes in their needs, particularly supporting the transition for young people as they move to secondary school, approach young adulthood and move from child to adult services. 

Newly diagnosed autistic people should be informed of their right to a social care needs assessment, as well as a carer’s assessment for parents and carers. They should receive information about: 

  • potential entitlement to financial support and benefits 
  • local community support 
  • parent and carer learning opportunities 
  • recommended sources of information.

SIGN guidelines in Scotland 

In Scotland, appropriate multiagency professionals such as those from education, social work, voluntary sector, careers services and employers should be involved following diagnosis, although there is no requirement within the SIGN guidelines to produce a plan.

Following a diagnosis, the autistic adult or the parent or carer of an autistic child should be given information about their diagnosis along with details of how to access: 

  • social security benefits 
  • voluntary/community supports 
  • parent and carer training opportunities 
  • recommended sources of further information.

Resource: Template letter to request a support plan

You can adapt this letter template and send it to your/ your child’s key worker, GP or healthcare professional to request a support plan following a diagnosis.

View the template letter

Although the guidance above outlines the post-diagnostic support that autistic people should receive, many people report not receiving what they are entitled to. This means that they can find the time following their diagnosis stressful to navigate. 

Even if you or your child are not offered support following diagnosis, formal support may still be available, and this can often be requested directly. However, additional assessments may be needed to access the required support.

Social care support

Many autistic people live independently, but others will need support with specific tasks or activities in or outside of their homes, with some requiring 24/7 specialist support.  

To establish the type and level of support needed from social care services, an assessment is required to identify a person's needs. Once the assessment is completed, local authorities must provide the necessary support that the assessment identified as needed. Assessments should be provided for children, young people, adults, and carers with apparent needs. 

A social care assessment may be arranged by a professional to identify support that may be needed, or it may be requested by a parent, young person, or adult themselves. It is not necessary to wait until an autism diagnosis is confirmed to request a social care assessment, as the assessment is based on the needs of the individual rather than a particular diagnosis. 

During an assessment, a specialist, such as a social worker or occupational therapist, will usually come to your home to talk to you. They should ask for information about you or your family member, such as daily living skills, communication needs, and eating and sleeping habits. 

The process for requesting an assessment varies throughout the UK. Our website has nation-specific information about social care assessments. For adults in England, the social care webpages feature a chatbot that will guide you through the process of requesting a social care assessment.

 

Employment support

Seeking work

When applying for roles, it can be helpful to look for employers who have joined the government Disability Confident Scheme; they will display the Two Ticks logo. If an applicant meets the criteria outlined in the job description for a particular role and has disclosed a disability, Disability Confident employers will guarantee an interview. 

It may be helpful to book an appointment with the Disability Employment Advisor at Job Centre Plus. The advisor can offer support and advice and link you to local employment services. 

Charities also provide support to find work.  Our free online Finding Employment module may help you develop the skills you need to find work. The module has been designed for autistic people by autistic people and can be accessed and used independently.
 

Adjustments at work 

Employers must make reasonable adjustments so employees who are classed as having a disability, including autism, are not disadvantaged. Following a diagnosis, you may like to request an adjustment in the workplace or during the application process. Employers must consider your request but don’t have to provide it if it is unreasonable. The type of adjustment needed will depend on your own needs.

Examples of reasonable adjustments that autistic people have told us were helpful for them, include:

  • writing down instructions and tasks 
  • giving short, clear instructions 
  • breaking down large tasks into smaller components 
  • a workplace mentor or named person to help discuss issues at work 
  • having a regular timetable of tasks to add structure to your working day 
  • asking that people make it clear to you if you are giving more detail than is required 
  • being told about changes before they happen, which allows time to think about them and manage reactions 
  • flexible working to promote productivity 
  • workplace ‘passports' and one-page profiles can help colleagues understand you, build relationships and improve communication with others 
  • presentations provided in advance, allowing time to prepare any questions.

If you feel reasonable adjustments are needed in your workplace, you can approach your manager to request these. Further information can be found on our Employment page.
 

Claiming benefits

Depending on a person's age, various disability-related benefits are available in the UK. Eligibility for these benefits is based on an assessment of the impact of a disability on daily life and independent living. These benefits are intended to cover the extra costs of living with a disability.  

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

In Scotland, there are: 

Blue badges are also available throughout the UK to help people that struggle to get out and about. You can check if you are eligible by using the Gov eligibility checker. 

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

Support at school

It is helpful for parents to share a child's diagnosis with relevant school staff. Older children who are able to understand their diagnosis may want to discuss which staff they are comfortable with being told this information. Sharing the child’s diagnosis, along with information about their individual strengths and needs (which may be detailed in their autism assessment report), should help the school provide suitable support. Young people should be involved in discussions about their needs, with support being provided to help them contribute. 

If your child doesn’t have a written support plan at school, the school may need to create one in consultation with you. If there is already a plan to support your child, it may need to be changed to consider any recommendations from the assessment report. 

Once an autism diagnosis is received you may want to meet with relevant school staff. This may be the class teacher, support worker, or someone responsible for supporting pupils with additional needs within the school. 

Parents have told us about steps they took to prepare for the meeting:

  • read the child's diagnosis report and highlight areas that indicate the support the child will need in school 
  • list any views, concerns or questions to be discussed 
  • use this list during the meeting and tick off points as they’re addressed 
  • ask someone who also knows the child to attend the meeting so they can take notes (the school should be informed that they will be attending).

School support by nation

The type of support provided in school will depend on your child’s needs and will also be different depending on where you live.

Support in Further or Higher Education

For students in Higher Education, support should be provided to meet individual needs. An assessment will usually be carried out to identify their study and wellbeing needs and funding for the required support is provided through Disabled Students Allowance (DSA).  Further information about support that may be available in Higher Education can be found on the UCAS website. Support for needs outside of study will be accessed through a social care assessment.

Young people up to age 25 in England may also have an EHC Plan whilst they are in further education.

In England, Scotland and Wales the Equality Act 2010 sets out a duty for further and higher education providers to make ‘reasonable adjustments’ to ensure a person with a disability is not at a disadvantage. Because we’re talking about legislation, we’ll sometimes use ‘disabled’ as a general term that includes autism.

The type of ‘reasonable adjustment’ that can be provided will depend on the needs of the individual student.

Autistic people have shared examples with us of reasonable adjustments they have requested. These include:

  • extra time to complete assignments or exams 
  • provision of a quiet space 
  • alternative ways of completing group work 
  • a prompter to help in exams 
  • study skills support or mentoring.

Disability Rights UK has a list of possible adjustments including some autism specific options.

Further information about the Equality Act 2010 and reasonable adjustments can be found on our disability discrimination in further and higher education webpage.

In Northern Ireland, special educational needs protection also applies to further and higher education. The Equality Commission for Northern Ireland provides information on equality law and good practice.

 

What can I do if support is not provided?

Please visit our page What can I do if formal support is not offered or is not enough?

Links, resources and article sources

Related advice and support

What can I do if formal support is not offered or is not enough?

Read more

How will I feel after receiving an autism diagnosis?

Read more

Emotional support for family members after a diagnosis

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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