I am writing this post in response to a recent forum discussion where an individual disagreed with the autism level assigned by their diagnosing clinician.
As part of diagnosing Autism, clinicians are able to add “specifiers” to the diagnostic label. These are basically a shorthand way of sharing with other professionals what else is going on for this person in addition to traits of Autism. One of these specifiers are known as “severity levels” and are determined separately for each of the Social Communication and the Restricted/Repetitive Behaviours criteria.
Autism “levels” (Level 1, 2, or 3) reflect current support needs at the time of assessment. As outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM‑5‑TR), severity specifiers may vary by context and fluctuate over time and should not be used to determine eligibility for services or supports.
Autism levels therefore provide a general descriptor of current support needs, not a fixed measure of functioning or ability. What may be helpful to know is that for the majority of DSM diagnoses, including Autism, there must be “clinically significant impairment” or distress. And it is the degree of “impairment” that is captured in the severity level. So how does a clinician assign a severity level to an Autism diagnosis?
I consider what supports are currently in place, if any, and the functional impact both with and without supports available to an individual. For individuals who are “independent” what scaffolds are needed to be independent, how much impact is there to maintain independence? One tool I use to help me are evidence-based adaptive functioning measures. Occupational Therapists might use the same or similar tools to evaluate an individual’s daily living skills.
Where possible I gather data from not only the individual, but also someone well known to them (a parent or carer, a teacher or work colleague, perhaps a long-time friend or family member). This helps to not only understand the individual from their point of view, but if others notice their struggles or if context is variable (eg familiar versus unfamiliar environments, structured versus unstructured settings, etc).
Additionally, I need to consider any co-occuring conditions (be that something like ADHD, anxiety or chronic health) that might be impacting and clarify what is autism-related or autism-specific and what is increasing support needs overall. These are also mentioned as additional specifiers to an Autism diagnosis.
To very simply and reductively explain an individual’s impairment, using the DSM-5-TR Table for severity levels (p.58)
Level 1 “requiring support” is defined as Autistic traits and behaviours that without supports in place and cause noticeable impairment.
Level 2 “requiring substantial support” is described as Autistic traits and behaviours that even with supports in place impairments are apparent to others and interfere with functioning in a variety of contexts.
Level 3 “requiring very substantial support” is defined as causing severe impairments and marked interference with functioning in all spheres.
When I assign a diagnosis or specifier, I aim to ensure that my clinical reasoning is transparent from the initial consultation through to the feedback session. This includes explaining how I reach my conclusions, whether that involves confirming a diagnosis, assigning specifiers such as levels, or determining that a diagnosis is not supported. At times, the outcome may differ from the original referral question, which can be very difficult, moreso when assessments are not easily accessible.
For individuals seeking further clarification or an independent review, a second opinion assessment report, can be sought from another professional. Just as we might with a medical diagnosis that we find unsatisfactory, we are within our rights to seek psychological or psychiatric re-assessment. I’m not advocating “doctor shopping” but there is a difference between seeking a diagnosis from a practitioner who has extensive experience in an area or what is known as “scope of practice” (but that’s a post for another day) compared with a practitioner who holds different levels of confidence.