Unpacking Late-Diagnosed Autism Part One
As autism diagnoses seem to become more common within American society many are asking why and why now? Do more people fall somewhere along the autism spectrum today than in generations past, or are we just more aware now? With the increase in public and professional awareness surrounding autism–and the changing of diagnostic criteria for who is considered to have autism–many people have experienced a misdiagnosis or late diagnosis.
What is autism?
Autism, or Autism spectrum disorder (ASD), is a lifelong neurodevelopmental difference that impacts:a person’s social interaction, verbal and nonverbal communication, and often involves the presence of repetitive behaviors and restricted interests.
The “spectrum” within ASD refers to the reality that autism presents differently across the communities’ experiences and that every person with autism has their own unique strengths, challenges, and effects.
The definition of autism and who is considered “autistic” within the spectrum has changed over time to incorporate other developmental differences, as well as previously separated categories of autism such as Asperger’s syndrome.
Autism is considered one of the many neurological differences that make up the neurodivergent community.
Many of the ways in which Autism can show up are:
Challenges in social communication and social interaction
Repetitive or restrictive behaviors (i.e. stimming and routines)
Over or under sensitivity to light, sound, taste, or touch
Highly focused interests or hobbies (also known as special interests)
Masking (camouflaging autistic traits)
Read more about them here from the National Autistic Society (UK)
While many of these expressions and experiences are indicative of autism, not every individual will exhibit all or the majority of these listed and should seek professional assessment for a definitive diagnosis.
And, many non-autistic people may identify with some of the aspects of this list, but that doesn’t necessarily mean they fall within the autism spectrum. It's important to recognize the impact and intensity that these factors have for an autistic person in a way they do not for a non-autistic person.
Differences between Aspergers & Autism:
Aspergers refers to a classification of autism that was previously associated with a “mild” or “high-functioning” presentation of autism that was introduced into the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1994 to better describe a person’s functioning in reference to their language skills, support needs, and IQ score.
While Aspergers and Autism have historically been mentioned in tandem with one another, the diagnosis of Asperger’s no longer exists as of 2014 and the signs and criteria that were once part of an Asperger’s diagnosis now fall under ASD. While Asperger’s may not exist as a diagnosis, the term still lives in the community of those who were previously diagnosed as a means of self-identification.
Masking Autistic Traits:
As Dr. Hanna Belcher explains, camouflaging autistic traits or “masking” is the process of disguising autistic traits in order to appear more neurotypical. While masking is something that all humans use at one time or another to hide parts of themselves, for those with autism there is a greater pressure to hide their true selves for fear of discrimination and non-acceptance from others.
Masking can range from a survival technique to a way of maintaining certain relationships (like a job or certain friendships) and the ability to mask, either knowingly or unknowingly, is a practice that can take time to understand.
Some of the signs of masking are:
Forcing or making conscious eye contact during conversations
Mirroring distinct facial expressions and gestures in expectation with what is considered “socially acceptable”
Hiding or minimizing personal interests
Developing a repertoire of rehearsed responses to questions
Scripting conversations (like writing them down or practicing them in your head)
Pushing through intense sensory discomfort including loud noises
Disguising or suppressing stimming behaviors
“Shutting down” or experiencing emotional exhaustion after lengthy social engagements
Masking is often rewarded within our society, the greater the mask, the greater reward.
But when people with autism mask their symptoms they are trying to blend in and perform to the level of a neurotypical expectation. Because of this pervasive masking has been linked to negative effects on well-being such as:
Delayed autism diagnosis
Exhaustion and fatigue – masking takes a lot of effort to maintain especially for extended periods of time
Change in self-perception or self-identity (not feeling like one’s true self, feeling like a “fake”)
Feelings of resentment toward people or situations where heavy masking is required
Increased feelings of feeling “othered” and “not belonging”
Increased stress and anxiety over masking effectively
Depression and increased suicidal thoughts
Risk of autistic burnout
With masking comes a whole laundry list of expectations and ways of being that might help an autistic person blend in but the effects of masking can also take a heavy toll. At the end of the day, masking is a strategy to cope in a world that is often not accommodating to those with autism. This doesn’t mean that one should stop masking altogether, but instead be aware of how this strategy is used to cope and how it affects us.
In order to lessen this burden individuals with autism can take steps to decrease the effects of long-term masking:
Practice self-compassion for yourself and the times when you mask:
What if I don’t know where to start? We are more than just masking and non-masking. We can’t always mask and we can’t always unmask but it is important to maintain compassion for the part of you that still camouflages and the part of you doesn’t need to anymore.
Prioritize non-masking activities alone or with those you feel comfortable with:
How do I get comfortable with not masking? Starting small and experimenting with prioritizing joy, rest, your special interests, and stimming can help you get to know yourself outside of masking.
Recognize internalized ableism:
What if I become more visibly autistic? Just because your autism was being masked does not mean that it wasn’t there. It’s important to understand why masking happens as a way to cope and how it is a way to assimilate.
Be aware of how masking affects your relationships:
Am I playing a part that others expect of me? Separating your true behaviors from the accommodations you’ve made to appease the people around you.
Find and incorporate different stims and stim toys into routines:
How can I find ways to stim at work? Many online sellers now make adult stim toys that are designed to be quiet and covert so that they can be used throughout the day more discreetly.
Seek out the larger community:
Recommended Organizations:
In the second part of this blog series we’ll cover:
Unpacking High/Low functioning
Diagnosing Autism
Gender & Autism
Code Switching, & Autism
PTSD & Autism
& Moving forward
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.