Thinking about an autism diagnosis? Here’s what really happens in the appointment — and the surprising questions you may be asked

Words: Amy Mica Marsden. Images: Shutterstock.

Think you might be autistic? Whether or not you decide to book an assessment is completely up to you – some people find a diagnosis helpful, whereas for others it doesn’t feel necessary.

If, however, you decide to go for it, it can feel scary and daunting if you’re not quite sure what to expect or what the clinician will be assessing you on. We spoke with adult autism evaluator Gayle Weill, LCSW, to find out everything you need to know about the process.

What to expect in your appointment

‘The assessment process can vary depending on the clinician and the purpose of the evaluation,’ says Gayle, with every evaluator having their own preferred approach. That said, there are some things you can generally expect regardless of where you go.

The evaluation will likely be a conversation between yourself and your clinician, psychiatrist, or assessor, where they will ask you a series of questions aimed at exploring your current experience, as well as your developmental history. They won’t interrogate you, and it’s important to remember there are no ‘wrong’ answers – only your own experiences. Before your assessment, it can be useful to make notes of what symptoms you experience, as well as anything notable from childhood.

‘Some autism evaluations, particularly those conducted by psychologists or neuropsychologists, may also include neuropsychological testing,’ explains Gayle. ‘This can assess areas such as attention, memory, executive functioning, language, intellectual abilities, or adaptive functioning. This type of testing can be helpful when there are questions about other cognitive or neurodevelopmental conditions. However, a full neuropsychological evaluation is not necessary for every adult in order to diagnose autism.’

What questions may be asked

During the assessment you will be asked about a very wide range of topics, so the assessor can get a good idea of your experiences and struggles in everyday life.

‘I want to understand not just whether someone has a particular trait, but how that trait functions in their life,’ says Gayle. ‘We may explore friendships and relationships, communication, sensory experiences, routines, interests, school and work experiences, and how the person has learned to navigate social situations over time.’

A family member or loved one may have been asked to submit information about you as a child, as symptoms need to have been present from youth through to adulthood. This could also be discussed in the assessment.

‘An important part of a thorough evaluation is differential diagnosis. There can be overlap between autism and conditions such as ADHD, anxiety disorders, trauma-related symptoms, and other mental health or neurodevelopmental conditions. The clinician needs to consider the whole picture, including whether autism, another diagnosis, or more than one condition best explains what the person is experiencing.’

At the end of the assessment, your evaluator will typically discuss their conclusions and the reasoning behind them, as well as making a recommendation for next steps. This means you will likely know whether you’ve received an autism diagnosis by the time the assessment is over. 

Diagnostic criteria explained

Your assessor will likely refer to a specific reference manual when discussing your symptoms. In the US, this is typically the Diagnostic and Statistical Manual of Mental Disorders (otherwise known as the DSM-5-TR), published by the American Psychiatric Association.

‘For autism, they lay out the criteria clinicians use to determine whether someone meets the requirements for an autism spectrum disorder diagnosis. They are not questionnaires or autism tests themselves. Instead, they describe the patterns a clinician needs to look for when making a diagnosis,’ Gayle explains.

When considering an autism diagnosis, clinicians are typically looking for lifelong patterns in two broad areas: differences in social communication and interaction, and restricted or repetitive patterns of behaviour, interests, or sensory experiences.

Social communication

Differences might include, for example, ‘difficulty intuitively knowing what is expected in social situations, struggling with the back-and-forth flow of conversation, taking language very literally, difficulty interpreting nonverbal cues, or finding it challenging to develop and maintain relationships.’

This is also commonly where questions about eye contact and whether you feel you’re able to read facial expressions may pop up.

Restricted or repetitive patterns

The other side of the diagnostic criteria will vary from person to person, but will generally assess how you react to patterns and processes in your life. ‘Someone might have a strong need for routine and become distressed by unexpected changes. They might have very intense or highly focused interests, engage in repetitive movements, or experience sensory input differently. For example, ordinary sounds, lights, textures, smells, or crowded environments may feel unusually overwhelming for someone with autism.’

It’s important to note that autism characteristics exist on a spectrum, with each autistic person displaying varying levels of each. Some may find they struggle most with sensory issues, whereas others may experience this much less, but find it much more difficult to navigate social issues than others. 

Clinicians will also be looking for ways in which these characteristics or symptoms affect your life meaningfully, and whether another diagnosis would better fit (such as ADHD or schizophrenia).

Unexpected questions

Not everything the assessor asks will make perfect sense to you – and some have interesting ways of evaluating your needs and characteristics. 

For example, you may be asked how you feel about socks, or asked to explain how you brush your teeth.

These can sound a little random at the time, ‘but they’re ways of asking about sensory experiences, which are one of the things clinicians assess when considering an autism diagnosis,’ explains Gayle.

‘If I ask about socks, I’m trying to find out whether seams or certain fabrics feel uncomfortable enough that someone avoids wearing them. With brushing teeth, I might ask about the feeling of the brush or the taste and texture of toothpaste. Questions about particular foods can help me understand whether someone has similar reactions to tastes or textures.

‘I might also ask what happens when plans change at the last minute. That’s a way to explore routines and how the person experiences unexpected changes, which is another area we consider.’

Again, there is no ‘correct’ answer to any of these questions, and no one answer will influence your diagnosis. Clinicians are more interested in the overall pattern across your life and experiences, rather than basing their decision on whether or not you enjoy wearing socks.

Autism and impostor syndrome

Impostor syndrome is common in adults who have gone undiagnosed – you may have been told you aren’t ‘autistic enough’ before, especially if you have friends, a career, a spouse or children, or appear socially competent.

However, it’s important to remember that autism is not only a spectrum, but many of those who were not diagnosed until later in life have developed coping strategies and ‘masking’ techniques in order to better navigate the world and appear more neurotypical – often without even realising it.

‘For adults who were missed in childhood, receiving an accurate diagnosis can sometimes provide an entirely new framework for understanding experiences they have struggled to explain for much of their lives.’

Gayle Weill is a licensed clinical social worker, working with women and mothers in therapy, and with adults seeking autism evaluations. Visit her at gayleweilllcsw.com