Joining the dots and making the link: Getting assessed for autism for the first time as an adult
The number of Australians living with Autism went up from 1 in 150 in 2015 to 1 in 70 by 2020, but the research does not tell us how many adults were diagnosed for the first time in this period. Anecdotally however, we are seeing more and more adults getting diagnosed for the first time. In this blog I talk about what to expect from the assessment process.
What triggers the need for assessment among adults?
-Having one of their children get assessed for ASD (autism spectrum disorder) and the clinical interview process clarifying some of their own experiences.
- Increasing complexities of adulthood and role demands at both work (e.g. being promoted to roles requiring people management) and in personal relationships (e.g. settling into long term committed relationships) that trigger off adjustment difficulties, distress, or crises that need formal support.
-For people with an existing physical or psychosocial disability, pervasive and persistent difficulties engaging with required supports.
Joining the dots: What does the assessment process look like for adults?
Step 1: Clinical interview and behavioural observation during assessment
Covers early development, family history, school and social history, mental health history, current challenges and strengths - in work or personal life. This will typically happen with the adult in question and a parent or sibling if they are able to comment. This could take approximately 90 mins.
Step 2: Conducting a diagnostic assessment using standardised tools
Such as the Autism Diagnostic Interview - Revised (ADI-R). The ADI-R in particular is best done with a parent or other person who is able to comment on the adult’s early development and childhood. If no such person is available (either due to death or family estrangement), then the assessment is done with the adult in question and care is taken to also get input from others in their life. This could take approximately 3 hours.
Step 3: Functional assessment
These are done using standardised tools to arrive at level of functional impact in the areas of daily living, communication, and socialisation. This could take approximately 90 mins.
What happens next?
The psychologist or psychiatrist goes over the report with you and explains the specific cognitive, emotional, and behavioural features associated with ASD as well as the level of functional challenges the adult is experiencing.
They will also discuss support recommendations and sign off on any formal support requests that the adult/guardian decides on.
What does the assessment process feel like - is it stressful?
Adults receiving an ASD assessment and diagnosis report the following:
- It is indeed stressful to go through the entire detailed process and some might try to delay the process or find that it takes a lot out of them after a session. But they also report feeling excited to get formally assessed and very often are eager to provide information and fill in the gaps.
-They also report going through some grief (that may come and go) over lost opportunities or experiences of trauma/bullying they experienced in the past.
-They report finding the assessment questions and the final diagnosis immensely clarifying and validating after a lifetime of doubt, self-blame, and feeling out of place. The line we typically hear is, “it all makes sense now”.