Getting an autism diagnosis as an adult, and what changes afterwards

If you are a relative, the decision belongs to the person. An adult with capacity decides whether to be assessed, who comes with them and who sees the report, and NICE tells autism services to discuss with the person whether and how they want family involved. The most useful thing a relative can do is offer practical help: a lift to appointments, memories of what they were like as a child, and help filling in forms.

Autism is not a mental illness and not a learning disability, although some autistic people also have one or both. The NHS describes it as a difference in how the brain develops that affects how a person sees and experiences the world. For the wider picture, start with autism in adults: the guide, part of our disability care section.

The two routes are not a one-off choice. You can stay on an NHS list while you think about paying. If you do go private, tell your GP and ask whether to keep your NHS referral open until you know the private report will be accepted.

1. 1

   Write it down before the appointment

   A week before

   One page is enough. List what you notice now, in conversation, at work, with noise or change, and anything you or your family remember from childhood. A GP appointment is short, and a written list means nothing important is left out if the room feels rushed.
2. 2

   Ask for what you need at the surgery

   When you book

   You can ask for a longer or first-of-the-day appointment, a quieter place to wait, or to bring someone with you. You can also hand the list over and ask the GP to read it.
3. 3

   Ask the GP to refer you

   At the appointment

   Say that you would like an autism assessment and why. The GP decides whether a referral is clinically appropriate. If you are turned down, ask why, and ask to see another GP for a second opinion.
4. 4

   Ask about Right to Choose

   England only

   In England you have a legal right to choose which NHS-funded service assesses you, as long as it holds an NHS contract for that service and the GP agrees it is suitable. Ask the GP which services you can choose and how long each is waiting.

Right to Choose comes from the NHS Choice Framework. NHS England's patient choice guidance says autism assessments delivered remotely may be covered, and that the GP should talk through the options with you. Each provider has its own criteria, and an NHS integrated care board in London states that Right to Choose does not guarantee a quicker assessment. Your choices in the NHS explains the right, and the National Autistic Society's guide on how to request an autism assessment includes questions to take to the GP.

In practice this means planning for a wait of many months, and in some areas longer. The NHS says that once a referral is accepted it can take a few months or longer to get an assessment. NHS England publishes the same figures for each area, and waits differ between services, so ask the GP about the wait at each service you could choose before the referral is sent.

The months on a list do not have to be empty. The NHS says a GP can tell you what support is available while you wait, and the National Autistic Society has a page on what you can do while waiting. The section below on support without a diagnosis covers what you can ask for straight away.

A relative who is asked to give the childhood history does not need to prepare a speech. It helps to think back to how the person played, talked and made friends as a small child, how they coped with change and with school, and anything teachers said. Write a few notes and bring them. If you are the parent of an adult son or daughter, the team will be asking about your child, but the appointment is theirs: follow their lead on how much you say. The National Autistic Society's page on what happens during an assessment includes a template letter for asking for adjustments.

Be wary of any service that offers a diagnosis from a single online questionnaire. NICE describes short screening questionnaires, such as the ten-question AQ-10, as a way to decide whether to offer a full assessment, not as a diagnosis. An assessment that includes online appointments can still be thorough: the National Autistic Society notes that some services mix online and in-person sessions, and the questions above apply to both.

The statutory guidance for councils and the NHS also says that when an adult is diagnosed, the NHS service should, with their consent, let adult social care know so that a needs assessment can follow if they want one. Do not wait for that to happen. How to ask the council for a needs assessment sets out the process, and social care support for autistic adults covers what to say so the assessment reflects autism properly. For money, benefits for autistic adults and our guide to PIP and care at home explain what can be claimed. A relative doing a lot of the helping can read what a carer's assessment is.

The National Autistic Society has a section on life after a diagnosis, including how to talk about it and support for family members. For adults who were diagnosed late, looking back can take a while. Our guide to autistic women and late diagnosis covers why women in particular are often missed and what people say helped afterwards. If work is where things are hardest, autism and work explains reasonable adjustments and Access to Work.

Some autistic adults want practical help at home, while they wait or after a diagnosis: help with shopping and meals, getting to appointments, keeping on top of post and bills, or the parts of the day that use up the most energy. That help does not depend on a diagnosis. On PrimeCarers, which is an introductory service rather than an agency, the autistic person (or the family, where the person wants them involved) chooses the carer, meets them first, and agrees the hours, the routine and how contact works directly with them. They can keep the same person, and for many autistic adults a predictable routine with one familiar face matters a great deal. You can search for carers near you and compare their rates.