Autism and the law

Key points of law for autistic people and their families

Autistic people’s human rights are protected

The Human Rights Act 1998 protects the rights and freedoms of everyone in the UK. Some of these rights are particularly relevant for autistic people. For example:

Article 2: Right to life

This means that everyone’s life is protected in law, and that the Government must take steps to protect lives in the UK.

Article 3: Freedom from torture and inhuman or degrading treatment

This means that you must not experience this treatment, including from public authorities. Public authorities must also take steps to stop this happening if they know it is happening, and carry out investigations where credible allegations are made.

Article 5: Right to liberty

This protects your individual freedom from detention that is unlawful. If you are detained, you have the right to ask a court to provide a quick decision on whether your detention is lawful: if it is not, the court can order your release. 

Article 8: Respect for your private and family life, home and correspondence

This is wide ranging, but includes your right to control who sees and touches your body, to choose your lifestyle, to be part of your community if you want to, and not stopping you from living in your home without good reason.

Article 14: Protection from discrimination in respect of these rights and freedoms

This means that all of the rights and freedoms set out in the Human Rights Act must be secured without discrimination. This covers both direct discrimination - being treated less favourably than another person in a similar situation - and indirect discrimination - being disadvantaged by something that applies to everybody.

Autistic people should be assumed to have capacity unless it is established that they lack capacity

The Mental Capacity Act 2005 sets out the legal framework for determining whether an individual (usually once they are over the age of 16) has ‘capacity’ to make decisions, and if so what is in their ‘best interests’. ‘Capacity’ means the person’s ability to make a particular decision at the time it needs to be made. This can be relevant for autistic people, including those who have a learning disability.

The Mental Capacity Act sets out some key principles which must be applied by anyone considering whether a person has capacity and/or what is in their best interests:

• The starting assumption must always be that the person has capacity, unless it is established that they lack capacity. (Section 1(2))

• “All practicable steps” must be taken to try and help the person make a decision for themselves before they are deemed to lack capacity e.g. by using a different form of communication, such as non-verbal communication, or by treating a medical condition which may be affecting the person’s capacity. (Section 1(3))

• The person must not be treated as lacking capacity because they make an unwise decision. (Section 1(4))

• The person’s capacity must not be judged simply on the basis of their age, appearance, condition, or an aspect of their behaviour. (Section 2(3))

• Any decision made on behalf of the person should be a decision that is less restrictive of their basic rights and freedoms – as long as it is still in their best interests. (Section 1(6))

 Lack of capacity is defined as being unable to make a decision because of “an impairment of, or disturbance in the functioning of, the mind or brain” (Section 2(1)). The test to determine this should be applied by asking three questions:

1. Is the person able to make the decision?

2. Is there an impairment or disturbance in the functioning of the person’s mind or brain?

3. Is the person’s inability to make the decision because of the identified impairment or disturbance?

Autistic people have a right to reasonable adjustments in the workplace and in using services

The Equality Act 2010 is a fundamental law for autistic people. It protects people from discrimination, whether at work, or using a business or any public service.

Under the Equality Act, you have the right to ‘reasonable adjustments’ in the workplace or in the way services are provided, so that you are not treated less favourably than another person because of a ‘protected characteristic’.

‘Protected characteristics’ include disability, and you’re disabled under the Equality Act if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

• ‘Substantial’ is more than minor or trivial - for example, it takes much longer than it usually would to complete a daily task.

• ‘Long-term’ means 12 months or more.

This means that whether or not you or your family use the term ‘disabled’, as an autistic child, young person or adult you have the right to reasonable adjustments.

Adjustments might include:

• Changes in the way that education is provided in order to meet your needs, so you are able to learn.

• The flexibility to work from home, or join meetings online, if social situations can be overwhelming.

• A structured working day, to minimise uncertainty.

• The NHS giving you a priority appointment because waiting in hospital can cause distress, or a longer appointment to give enough time to ensure what you say has been understood.

• Providing information about an appointment well in advance, so you have chance to prepare.

However, the key is whether these adjustments are ‘reasonable’, which depends on how effective they are in addressing the disadvantage you would otherwise face, how practical they are, and their cost.

It’s also an anticipatory duty, which means that organisations shouldn’t wait for you to request reasonable adjustments: they should consider in advance what they can do to make their services accessible.

Health and social care organisations must meet autistic people’s information and communication needs

The Accessible Information Standard (Section 250 of the Health and Social Care Act 2012) aims to ensure people who have a disability, impairment or sensory loss get information they can access and understand, and any communication support that they need. It applies to autistic people.

The Standard applies to the NHS and providers of adult social care. They must:

1. Ask people if they have any information or communication needs, and find out how to meet their needs.

2. Record those needs clearly.

3. Highlight or flag the person’s file or notes so it is clear that they have information or communication needs and how to meet those needs.

4. Share information about people’s information and communication needs with other providers of NHS and adult social care, when they have consent or permission to do so.

5. Take steps to ensure that people receive information which they can access and understand, and receive communication support if they need it.

Local authorities and schools have a legal duty to meet children and young people’s special educational needs

Schools and local authorities must meet children and young people’s special educational needs. Not all autistic children and young people will need an Education, Health and Care Plan (EHCP), but even if they are not eligible for an EHCP, schools must identify their needs and provide support to meet their needs under a system called SEN Support.  This is a 4 part cycle known as “Assess, Plan, Do, Review”. Schools must also make reasonable adjustments to support autistic children and young people, under the Equality Act 2010, as autism falls within the definition of disability in the Act.

Some children and young people will be eligible for more formal, structured support, as set out within an EHCP. Section 36(8) of the Children and Families Act 2014 says that if a local authority is asked to assess a child or young person’s special educational needs (SEN) for an EHCP, it must consider whether they have or may have SEN and whether they may need special educational provision to be made through an EHCP. These, and only these, are the tests set out in law. The key word is ‘may’; autistic children and young people are more likely to have these needs and require special provision, so it is more likely that they will be assessed for an EHCP.

If the local authority considers that a child or young person meets this test, it must agree to undertake an Education, Health and Care Needs Assessment. If it decides that an assessment is not necessary, this decision can be challenged in the First-Tier Tribunal (Special Educational Needs and Disability).

A child’s parents, a young person themselves, or someone from that child or young person’s school or college may make the request for an assessment to the local authority.

Under Regulation 5(1) of the Special Educational Needs and Disability Regulations 2014, the local authority must reply to a request to assess a child or young person within six weeks to let you know whether they will carry out an assessment.

If the local authority decides to assess, this does not necessarily mean they will decide to issue an EHCP.  If they decide not to issue an EHCP, they must inform the parents or young person within 16 weeks from the date of the request, and again, this refusal will trigger a right of appeal to the Tribunal.

If the local authority decides to issue an EHCP, they must do so within 20 weeks of the initial request for assessment. Within this period, the parents or young person must be given at least 15 calendar days to comment on a draft EHCP and/or express a preference for a particular school or other educational setting, which the local authority must then go away and consult.

In addition to the specific assessment duty set out above, section 22 of the Children and Families Act 2014 says that local authorities must carry out their functions with a view to identifying all the children and young people in their area who have or may have SEN or have or may have a disability. This requires some proactive steps to be taken by local authorities to gather information about the cohort of children and young people with SEN in their area, including autistic children and young people. The SEND Code of Practice acknowledges at clause 1.15 that there are a number of ways local authorities may gather this information, giving local authorities considerable discretion in this area. This means that although the aim of the duty is clear, in practice it may be difficult to enforce.

Education should meet the needs of autistic children and young people whether or not they have an Education, Health and Care Plan

If an autistic child or young person has an Education, Health and Care Plan (EHCP) their local authority must secure the provision set out in the EHCP, as set out in Section 42(2) of the Children and Families Act 2014. This is a non-negotiable; the local authority cannot just try.

However, whether or not an autistic child or young person has an EHCP, most* schools or other educational institutions must use their ‘best endeavours’ to meet that child or young person’s special educational needs; this is set out in Section 66 of the Children and Families Act 2014. Using ‘best endeavours’ means doing everything they reasonably can. This legal duty is on the school’s governing body, proprietor (if it is an academy) or management committee (if it is a Pupil Referral Unit), rather than the headteacher. In practical terms, having an EHCP (assuming you are entitled to one) gives you greater rights to support than relying on the school’s duty to use its ‘best endeavours’ - but the ‘best endeavours’ duty is nevertheless very important.

There is also a legal duty on local authorities under section 19 of the Education Act 1996 to make arrangements for the provision of suitable education (in school or out) for children of compulsory school age who, for whatever reason, may not receive suitable education unless such arrangements are made for them. This means that if an autistic child or young person is unable to attend school for reasons relating to, for example, their physical or mental health, the local authority may be required to put in place alternative educational support, for example, tuition at home, or arrange provision to help them get back into a suitable school.

An autistic child or young person will also be protected from unlawful disability discrimination under the Equality Act 2010, whether or not they have an EHCP. Schools must not discriminate in the way they admit (or refuse to admit), provide (or deny access to) education, provide (or deny access to) any benefit, facility or service, or in making decisions about exclusion for autistic pupils, as autism falls under the definition of disability in the Equality Act 2010. It will be unlawful for a school to treat an autistic pupil less favourably because of something to do with their being autistic, as autism falls under the definition of disability in the Equality Act 2010 - or for a school to have a policy, rule or practice in place which makes things more difficult for autistic pupils as a group (unless this treatment can be justified**). This means that schools are sometimes required to change things to ensure autistic pupils are not disadvantaged compared to their non-autistic peers. Claims for disability discrimination against schools are brought in the First-Tier Tribunal (Special Educational Needs and Disability). 

On exclusions:

• Paragraph 20 of the Government’s statutory guidance on exclusions, updated in 2023, says that “‘informal’ or ‘unofficial’ exclusions, such as sending a pupil home ‘to cool off’, are unlawful, regardless of whether they occur with the agreement of parents or carers. Any exclusion of a pupil, even for short periods of time, must be formally recorded”. It’s important to know that these exclusions are unlawful even if a parent/carer agrees that they should happen.

• Pupils can only be excluded for disciplinary reasons. They cannot be lawfully excluded because their school or education setting cannot meet their needs, or because of the actions of their parents.

• Historically, autistic children with a ‘tendency to physical…abuse’ were thought to fall outside the protection of the Equality Act 2010; however, in C&C v Governing Body [2018] UKUT 269 (AAC), the Upper Tribunal clarified that these children are afforded the same protection under the Equality Act 2010 as other disabled children. Now, if autistic children are excluded for reasons related to physical or violent behaviour, this could potentially amount to unlawful discrimination, depending on the steps taken by the school to meet that child’s needs and to make adjustments for their disability.

*The ‘best endeavours’ duty applies to mainstream schools,  maintained nurseries, 16-19 academies, alternative provision academies, institutions in the further education sector and pupil referral units. It therefore doesn’t apply to independent or non-maintained schools/nurseries. The Equality Act 2010 duties will, however, still apply.

**This type of discrimination can only be justified if it is a proportionate means of achieving a legitimate aim. Examples of legitimate aims include maintaining academic standards, or ensuring the health, safety and welfare of other pupils. Whether the discrimination can be justified will depend on the circumstances of the particular case, but financial cost alone cannot, by itself, provide a lawful justification.

Local authorities have a duty to assess an adult’s need for care and support, and to meet their eligible needs

The Care Act 2014 sets out the law around adult social care in England. Autistic adults and their families may need care and support, provided in their community, to meet their needs and help them thrive. This could include supported living, care provided in a care home, or care provided in the person’s home.

Under the Act, local authorities have a general duty to promote a person’s wellbeing and a duty to prevent or delay the development of needs for support. The expectation behind this duty is that they should provide the right support, as soon as possible, for people with eligible needs.

A local authority has a duty under Section 9 of the Care Act 2014 to assess a person who “appears to” be in need of care and support. They must do this when requested, regardless of the local authority’s view of the level of need for care and support, and regardless of the person’s financial resources.

The Statutory Guidance (2015) issued under the Autism Act 2009 says that: “This duty [Section 9 of the Care Act 2014] applies to people with autism and is not dependent on them having been formally diagnosed as having autism. Such an assessment should be carried out by trained practitioners, and where there are potential signs of autism, the assessment should take account of the communication needs of adults with autism. Assessment of eligibility for care services cannot be denied on the grounds of the person’s IQ.”

Although there is no time period set out in the law for completing a care and support assessment, the Local Government Social Care Ombudsman has said “We normally consider it is reasonable for this to take between four and six weeks from the date of the initial request”.

Following the assessment, the local authority must apply eligibility criteria to determine which of the needs identified during the assessment process are eligible and therefore must be met by the local authority. This duty is at Section 13 of the Care Act 2014.

The eligibility criteria are set out in the Care and Support (Eligibility Criteria) Regulations 2015. There are three criteria, which must all be met for the person’s needs to be eligible:

• The adult’s needs arise from or are related to a physical or mental impairment or illness.

• As a result of the adult’s needs, the adult is unable to achieve two or more of the ‘outcomes’.

• As a consequence, there is or is likely to be a significant impact on the adult’s wellbeing.

The ‘outcomes’ are defined as:

• Managing and maintaining nutrition.

• Maintaining personal hygiene.

• Managing toilet needs.

• Being appropriately clothed.

• Maintaining a habitable home environment.

• Being able to make use of the home safely.

• Developing and maintaining family or other personal relationships.

• Accessing and engaging in work, training, education or volunteering.

• Making use of facilities/services in the local community.

• Carrying out any caring responsibilities the adult has for a child.

‘Unable to achieve’ an outcome includes any of the following:

• Unable to achieve without assistance (e.g. support/prompting).

• Able to achieve but causes significant pain, distress, or anxiety.

• Able to achieve but endangers/is likely to endanger the health and safety of the adult or others.

• Able to achieve but takes significantly longer than would normally be expected.

Once an adult has been assessed as having eligible needs, the local authority must meet those eligible needs under Section 18 of the Care Act 2014. There is also a mandatory duty on the local authority to prepare a care and support plan, under Section 24 and 25 of the Care Act 2014, and this involves helping the adult decide how their needs are to be met.

Working with experts at legal practice Rook Irwin Sweeney, the Autism Alliance has developed a set of template letters for families and autistic people covering duties in the Care Act 2014, to be used when advocating for rights with local authorities. These letters can be accessed here.

A note on the Autism Act 2009

The Autism Act 2009 is an important part of the law, because it was the first Act in England to cover a specific group in society. It requires the Government to publish a strategy for meeting the needs of autistic adults in England, and keep it under review. It also requires the Government to issue guidance to local authorities and local NHS bodies in securing implementation of the strategy, and keep this guidance under review. Although this statutory guidance restates the laws and duties set out above, it also makes clear the Government’s intent in how local bodies should support autistic people and their families. This guidance is currently being revised to bring it in line with the National Strategy for Autistic Children, Young People and Families published by the Government in 2021.

Charities and services that can provide further information and support

• IPSEA

• National Autistic Society

• Equality Advisory Service

• Access Social Care

• Support SEND Kids

• Coram Child Law Advice

• Council for Disabled Children

• Ambitious about Autism

Legal practices that specialise in working with autistic people and their families

• Rook Irwin Sweeney

• Irwin Mitchell

• Steve Broach (39 Essex Chambers)