Unpacking Late-Diagnosed Autism Part Two
Unpacking High/Low functioning:
Note for this section: high functioning and low functioning are terms that are commonly used within the mental health care industry. We think it's helpful to have a general knowledge of what "high functioning" or "low functioning" are used in case you encounter them, which is why we've included the following section. However, at G&STC, we find the negative connotations that go along with the terms to do more harm than help in conversations with clients, so we opt not to use them in our care.
Both in and outside of the Autism community the terms "low functioning” and “high functioning” (or high support needs or low support needs) often take center stage in determining the level of care one needs or is entitled to surrounding their autism. These terms have been long used by both professionals and the general public to describe the presentation of those with autism.
While these identifiers have been the important basis in determining the very real support that an individual needs, they also come with a level of inherent social value that is not widely addressed within the overall discussion of autism.
Director Helen Tager-Flusberg at the Center for Autism Research Excellence at Boston University, relates that what determines those who are considered high functioning vs low functioning is often their intelligence quotients score (IQs) or how they progress academically.
However, neither of these areas can account for other aspects of a person’s life like adaptive behavior, daily living skills, differing forms of intelligence, and the whole scope of cognitive functioning.
In the case of those who are considered high-functioning, the term “high-functioning” was first introduced in the 1980s by researchers as a means of describing those who had Autism but did not exhibit an intellectual disability (an IQ score of below 70) and who had strong language skills.
Delineating low vs high needs can also ascribe value to someone’s experience in order to fit them into a box of understanding exactly how much “help” this person needs. Those who are considered high functioning might not need the support services and accommodations that others on a spectrum may need, but this isn’t to say that those individuals don’t need attention or support.
In a similar way, those who are considered low functioning do not always need the same level of support consistently throughout their lives, as well as, some of these accommodations we consider a necessity for low-functioning individuals might not always be exactly what they need.
While low and high-functioning labels have their place according to each individual and their comfort levels with the terms, we must also look at the societal value that we ascribe to those who are deemed low or high functioning and reevaluate if these terms are accurate predictors of someone’s experience and what they need.
Even within the autism community, understanding our internal and inherited biases against autism and what autism looks like can be beneficial to our understanding of ourselves and each other.
Diagnosing Autism:
Some of the factors that heavily impact a person’s ability to get diagnosed often include barriers related to who is able to access services and who is able to afford testing. Even with expanding awareness about the presentation of autism across identities, autism diagnoses have traditionally been highest in white affluent children in the U.S.
Due to the original diagnostic criteria being more aligned with the experiences of majority white, heterosexual, men, of higher income status and the presence of socioeconomic barriers (like affording testing, access to treatment, and underfunding in school resources) many autistic people go without a diagnosis. Researchers like Laura Foran Lewis, estimate that 50–60% of the population with ASD remains undiagnosed.
This has given rise to a prevalence in self-diagnosis autism and the utilization of online self-assessment tools like the ones provided by resources like Embrace Autism. While not entirely perfect, a 2015 study by Bram B Sizoo and other researchers concluded that self-diagnostic tools can be quite accurate and specific for correct autism diagnoses. Those who have decided to not receive a formal diagnosis or who cannot afford to are by no means less valid in their autism than others.
Gender & Autism:
Several studies have come to show a greater likelihood of being gender diverse,(transgender, non-binary, gender non-conforming), and autistic.
Varun Warrier a study investigator and research associate at the University of Cambridge in the United Kingdom found that Gender-diverse people also report, on average, more traits associated with autism as well as being five times as likely to suspect they have undiagnosed autism as cis people are. While on one hand these results can be linked to the prevalence of trans and gender non-conforming individuals that seek out medical and mental health care, further research needs to be done to more accurately understand this phenomenon.
These studies also illustrate how little is actually known about the presentation of autism in cisgender women and girls as researchers have often missed or overlooked findings.
Code Switching, & Autism:
The term code-switching was originally coined by John J. Gumperz to refer to the process of dual-language speakers switching between their native language and the one spoken by the majority.
Overtime code-switching has come to refer to the experience of a marginalized person or group that consciously or unconsciously adjusts their language, syntax, grammatical structure, behavior, and appearance to fit into the dominant culture.
Little is known or researched about the ways in which code-switching for BIPOC in America intersects with their masking behaviors. While code-switching and masking are not the same, there is a distinct intersection between the two and how they present for BIPOC autistic individuals. BIPOC with autism are tasked with reckoning with both white and allistic (non-autistic) society. Greater support and understanding are needed to address this intersecting topic as well as highlight personal stories and experiences.
PTSD & Autism
In her series Misdiagnosed Mondays, clinical psychologist Dr. Megan Anna Neff relates the overlap in experience between PTSD and autism. Dr. Neff relates that while experiences like difficulty with social cues, special interests, and repetitive behaviors are more unique to autism, there is a definitive overlap with PTSD–specifically in regard to heightened sensory input, hypervigilance, and difficulty managing intense emotions.
She argues that while the two are often co-occurring, the presence of a PTSD diagnosis often overshadows evidence for a proper autism diagnosis. Individuals with autism who are also women, genderqueer people, and BIPOC are often at greater risk for developing PTSD due to the greater victimization of these populations.
Moving forward…
Feelings of internalized shame or feelings of grief over lost time are completely natural, regardless of where you are in your journey as an autistic person. Even with a later diagnosis there is still an incredible opportunity for deeper self-understanding. Working with a therapist or being in a community with other autistic individuals can help bridge the gap of isolation that a late diagnosis has caused. Understanding your autism is a lifelong process that will be able to tell you more about yourself and how you experience the world.
BLOG AUTHORS ALL HOLD POSITIONS AT THE GENDER & SEXUALITY THERAPY CENTER (G&STC). THIS BLOG WAS WRITTEN BY THERAPIST IN TRAINING DUNCAN RICHARDS FOR MORE INFORMATION ABOUT OUR THERAPISTS AND SERVICES PLEASE CONTACT US.