Information for the public

How do I get help for autism?

If you, or a healthcare professional, family member, partner or carer, think that you have autism you should be offered an assessment.

You can get help for autism in a variety of ways, including seeing your GP or by contacting or visiting health or social care services yourself.

If you, or a healthcare professional, family member, partner or carer, think that you have autism, and you were not diagnosed as a child, you should be offered an assessment. If you were diagnosed with autism as a child, you may be offered an assessment in adulthood if you are being transferred from a service for children to an adult service.

What can I expect during an assessment?

At the beginning of the assessment, the purpose of it should be explained to you and you should be asked how you would like the results explained to you. If you agree, a family member, partner, carer or advocate may be involved to support you and help explain the results (see 'Involving your family, partner, carer or an advocate').

Staff should be aware of any communication needs or sensory sensitivities that you have, and make adjustments to the assessment where necessary, including how long it takes. You may be asked to fill in a questionnaire about your thoughts and behaviour, or the questionnaire may be read out to you if you have difficulties with reading.

During the assessment, professionals will want to get to know you and find out more about your problems so they can work out what kind of support would suit you best. They will ask about and assess your behaviour in social situations (including how you behave and communicate with other people), your early life, your life at home, college or work, and if you have any mental and physical health problems, learning disabilities, problems with speech and language, or sensory sensitivities.

If professionals suspect you may have additional problems, they may suggest that you have further medical tests, such as hearing or sight tests, genetic tests or a recording of brain activity (called an electroencephalogram or EEG) or other tests if there is a sudden change in your behaviour or weight or it is thought that you are in pain and not able to communicate this. However, for many people further tests are not needed.

Any particular risks should be assessed, such as the possibility of self-harm, your problems becoming worse very quickly, not being able to look after yourself, removal of support from family or other carers, and abuse or exploitation by others. A plan should be developed to manage any risks.

Some people with autism may occasionally behave in a way that other people find challenging (for example, they may become very distressed, agitated, disruptive or sometimes violent). Professionals will want to know about such challenging behaviour and if there is anything that might cause it or make it worse (such as communication problems, a physical or mental health problem, relationship difficulties, a sensory sensitivity or changes to daily activities). Professionals may want to see how you behave in certain situations so that they can offer you the right support if there is a specific behavioural problem.

If necessary, professionals may develop a plan of what should happen if you have a crisis. This should include situations that might lead to a crisis, any changes that need to be made to your surroundings so that you are able to manage the crisis, the role of any professionals involved in your care and how your family, partner or carer can support you.

If you, or your family, partner or carer, disagree with professionals about the results of the assessment and any diagnosis, or professionals think it might help with the diagnosis, you may be offered a second opinion from another professional.

What can I expect from health and social care professionals?

Health and social care professionals should work with you, and your family, partner or carer if they are involved, so that you can make decisions about your care. They should encourage you to manage your own condition, if possible. This may include helping you to recognise signs that you are finding it hard to cope. They should offer care and support respectfully, and they should be supportive, understanding and not critical of you or your lifestyle. Ideally once you and a professional have established a good working relationship this should continue throughout your care. However, if you do not feel supported by the professional responsible for your care, you should have the opportunity to transfer your care to another professional.

Health and social care professionals should be easy to identify (for example, they should wear a name badge), they should tell you what they do and they should be friendly and welcoming. They should address you using the name and title you prefer. Professionals should clearly explain any medical language and check that you fully understand what is being said about your care and support options.

Involving your family, partner, carer or an advocate

Health and social care professionals should discuss with you whether you would like your family, partner or carer to be involved in your care. If you agree, professionals should talk to you and your family, partner or carer about what information about your care you would like shared with them, and when. They should also be given information to help them understand autism and the care and support options for it.

You should also be asked whether you would like a trained advocate,who can help you put your views across.

Questions you could ask your healthcare team

  • Who will do the assessment? Where will it be carried out?

  • How long will the assessment take?

  • How will I be told about the results and will I have a chance to discuss them?

  • Will my diagnosis remain confidential?

  • Are there any support organisations specifically for people with autism in my local area?

  • Who can I contact in a crisis?

What happens after I have been assessed?

If you have been diagnosed with autism, you should be offered another appointment to discuss the diagnosis, what it means for you, any concerns you have and care and support for the future. You should be offered this appointment even if you have decided not to have further care and support.

Professionals should put together a plan for your care that takes into account your needs (such as any communication needs you have, or other needs related to any sensory sensitivities) and those of your family, partner or carer.

The decision about what kind of care and support options to have will depend on your preference and a number of other factors, including:

  • whether you have had any support for autism or other problems in the past and how helpful it was

  • how severe your autism is and how it affects your daily life

  • whether you have a learning disability or physical or mental health problem, how severe it is and how long you have had it

  • whether any sensory sensitivities could affect any support you are offered

  • any problems that could lead to a crisis.

Professionals should be sensitive and supportive if you feel anxious about making decisions about your care. They should also be aware that if they are providing care and support they need to be clear and consistent.

You should be given information about the care and support options available, including what they involve and how long they will last, whether they are suitable for most people with autism, and whether they will affect any other treatment you are having.

You should also be given a 'health passport', which is a card that lists the care and support you are having and other details in your care plan. You should be advised to carry the card with you.

Professionals should give you details about recognised national or local organisations and websites that provide information for people with autism, and about self-help groups, support groups and one-to-one support. They should tell you how to find and participate in them, and support you if you use them.

Help for people with autism who care for other people

If you have children or you care for other people, you should be offered support.

If you have children or you care for other people, you should be offered support, such as childcare, so that you can attend appointments and support groups and also continue with or start college or a job. If you are a parent, professionals should offer you support and advice in your parenting role, which may include a parent training course (to help parents understand their own and their child's feelings and behaviour).

Help for your physical health

Professionals should offer advice about the benefits of a healthy diet and exercise, taking account of any sensory sensitivities you may have. If you need extra help you may get more support from your GP or a dietician.

  • Information Standard