Being assessed for autism as an adult

Is it worth being assessed as an adult?

Only you can decide, and there’s no wrong answer. The National Autistic Society lists possible benefits, including that a diagnosis can “help you access support that meets your needs, such as reasonable adjustments at work or access to social care”. It is also honest about possible drawbacks, such as “restricting job choices such as joining the armed forces or facing potential stigma”.

For many people, the main reason is simpler: to understand themselves, and to have words for experiences they’ve had all their life.

Why are some people identified so late?

Some autistic adults grew up when autism was less understood than it is now. Others coped well enough at school, or found ways to fit in, so nobody asked. The National Autistic Society says that “many autistic women and girls struggle to get a diagnosis, receive a diagnosis late in life or are misdiagnosed with conditions other than autism”.

People often start to wonder after a change in their life: a new job, parenthood, burnout, or a child or relative being assessed. It’s never too late to ask the question.

What is masking?

The National Autistic Society describes masking as “a strategy used by some autistic people, consciously or unconsciously, to appear non-autistic”. It’s sometimes called camouflaging. Examples include forcing or monitoring eye contact, preparing scripts for conversations, copying other people’s expressions, and hiding stimming or reactions to sensory overload.

The NHS says masking “can make everyday activities and social interactions feel exhausting and stressful”. It can also mean autism is missed: the National Autistic Society links masking to “misdiagnosis, late diagnosis or under-diagnosis of autism”.

What is autistic burnout?

Autistic burnout is a term many autistic people use for a state of deep exhaustion. Writing for the National Autistic Society, the researcher Dr Dora Raymaker describes it as involving “chronic exhaustion, loss of skills, and reduced tolerance to stimulus”. The society’s guide for autistic adults explains that it “affects all aspects of a person’s life, and this makes it different from professional burnout, which is related to work”.

We don’t treat burnout, but if it’s part of your story, it helps us to know. If you’re struggling now, talk to your GP, and see our urgent help page if you need help quickly. Our mental health assessment can also help you work out what support you need.

How do I get assessed?

On the NHS, the first step is your GP. The NHS advises: “Speak to a GP to find out how to get an autism assessment in your local area.” In England, you can usually choose which NHS service does the assessment, under Right to Choose. Oakwell isn’t a Right to Choose provider.

Privately, you can contact a provider directly. As the National Autistic Society notes, “you do not need a referral from a GP or other NHS health care professional to request a private or independent assessment”. Our adult assessment costs £1,999, with no VAT payable.

What happens in an adult assessment?

The NHS says an adult assessment may involve questions about “how you behave with other people, your early life and your life at home, work or college”, and speaking to “someone who knew you as a child”. At Oakwell, the steps are:

1. A free 15-minute call, if you’d like one, and an initial consultation to agree whether assessment is the right next step
2. A self-report questionnaire
3. A developmental history (ADI-R), online, up to 2 hours, ideally with someone who knew you growing up
4. A structured observation session using the ADOS-2, about 45 minutes to an hour, usually by secure video
5. A review by the whole team against the DSM-5 criteria
6. A feedback appointment, usually online, in plain language
7. A written report, usually within 4 weeks of the feedback appointment
8. A follow-up call within 6 weeks of the report

For verbally fluent adults, the ADOS-2 uses Module 4, which is designed for verbally fluent older teenagers and adults. Our guides explain the observation session and the developmental history in more detail.

What if nobody can tell them about my childhood?

You can still be assessed. The National Autistic Society notes that for adults, “most information will be provided by you, although it may be helpful to consider information from others who know you well”. The NHS mentions that documents “such as school reports or assessments you’ve had at work” can help too.

If nobody is available, we agree other ways to gather the same information with you. CHECK: which other ways (§1)

Will masking affect my assessment?

It can, which is why it helps to talk about it. The National Autistic Society says “clinicians should be aware that some autistic people may mask during the diagnostic process”. You don’t need to perform, or to try not to mask. If you notice it happening, or you feel tired or overwhelmed, say so: that’s useful information, not a problem.

Your whole life history matters more than how you come across in any one session, which is why the assessment brings several sources together.

What can change afterwards?

For many people, the biggest change is understanding: of themselves, of their past, and of what they need. Some find community with other autistic people. Who you tell, and when, is your choice; the National Autistic Society has a helpful guide to talking about a diagnosis.

Practical support may also be open to you. Each has its own rules, so check the details on GOV.UK:

• Reasonable adjustments at work. GOV.UK says employers “must make reasonable adjustments” so workers with disabilities or health conditions aren’t substantially disadvantaged.
• Access to Work. It names autism as an example condition, and says: “You do not need to be diagnosed with a condition to apply.”
• Disabled Students’ Allowance. For students in England. For autism, GOV.UK asks for a report or letter that confirms the diagnosis.
• Personal Independence Payment (PIP). It’s based on how difficult you find daily living and mobility tasks, not on a diagnosis.

Do I have to tell my employer, or anyone else?

No. Your assessment and report are yours, and whether you share them with an employer, a university, family or friends is entirely your choice. Some people tell everyone; some tell only a few people; some share part of the report with their manager to support a conversation about adjustments; and some tell no one at all.

We won’t share your report with an employer or university without your consent. If you’re not sure where to start, the National Autistic Society’s guide to talking about a diagnosis covers when and how people choose to tell others.

What if the outcome isn’t autism?

An assessment is never a dead end. You’ll get clear, honest feedback about what the team found and why, with recommendations for what might help: perhaps support through your GP, a mental health assessment, or an assessment with another provider, for example for ADHD, which Oakwell doesn’t assess.

The reasons you asked still matter. Our illustrative example of an assessment that didn’t lead to a diagnosis shows what that can look like.