Finding support as an autistic adult

In short

• Many services do not need a diagnosis. In England and Wales, councils must assess any adult who may have care and support needs.
• A formal autism diagnosis comes through an NHS assessment. Waiting times can be long, so ask your GP what support you can get while you wait.
• Peer groups and autistic-led groups can offer support without a referral.
• Advocacy and equality advice are available, including in England, Scotland and Wales.

You do not always need a diagnosis

Many services ask about needs, not labels. A diagnosis can help with some decisions, but it is not a key that opens every door.

Section 9 of the Care Act 2014 says that where a council thinks an adult may have needs for care and support, it must assess whether they do and what those needs are. This applies in England and Wales. The Act does not require a diagnosis.

Scotland and Northern Ireland have their own social care arrangements. Contact your local council or health and social care service to ask what is available.

Getting an autism assessment

Adults can be referred for an assessment by their GP. A referral may also come from another professional you are working with, such as a mental health professional.

The NHS says the adult assessment usually involves one or more appointments with a team of health professionals. The team may:

• ask you to complete questionnaires
• ask about your behaviour, your early life, and your home, work or college life
• speak to someone who knew you as a child and someone who knows you now
• review GP letters and useful documents, such as school reports or workplace assessments

The assessment looks at your early years as well as your life now. It helps to gather old reports, letters and memories before your appointment.

In England, you can choose which NHS service carries out your assessment. Some services have shorter waits than others.

If you disagree with the result, you can ask the team to explain its decision, or ask your GP for a second opinion.

Post-diagnosis support

After a diagnosis, ask what support is available. You may be offered a follow-up appointment or a care plan. Ask about post-diagnostic groups, courses or one-to-one support in your area.

Peer and autistic-led groups

Look for groups run by autistic people. These are often called autistic-led groups. They can offer shared understanding and practical information from people who have similar experiences.

Check how each group works before you go. Ask about the format, whether you can leave early, what is expected of you, and whether there is a code of conduct.

Advocacy and equality advice

An advocate can help you with forms, meetings and decisions. You can also bring a friend, relative or advocate to a needs assessment.

If a service refuses reasonable adjustments, the Equality Advisory and Support Service can help in England, Scotland and Wales. It gives advice on equality matters, but not legal advice. In Northern Ireland, the Equality Commission for Northern Ireland provides equality advice.

Where to start

1. Decide what you need: a diagnosis, practical help, social contact, or a mix.
2. Contact your GP if you want to ask about an autism assessment.
3. Contact your council if you may need care and support.
4. Look for peer groups and advice services near you.

This guide is general information, not professional advice.