“Masking” or “camouflaging” are behaviors in which autistic individuals exhibit learned behaviors to hide traits that have been deemed different from the neuro-normative standard.
These behaviors can greatly impede an autistic individual’s ability to self-regulate, feel confident and advocate for themselves, industry insiders told Autism Business News. They can also keep autistic people from diagnoses, or cause later or incorrect diagnoses.
In some cases, these behaviors are even caused by treatment from industry professionals.
“We have a long history, whether that’s speech therapy or ABA therapy, of trying to support individuals by helping them seem more normal,” Lillian Vosa, regional director of speech and feeding services at Ally Pediatrics and pediatric speech-language pathologist, told ABN. “We have a lot of work to do in undoing that and undoing our old methods – and being neurodiverse-affirming in our care.”
Phoenix, Arizona-based Ally Pediatric Therapy provides ABA, speech and feeding therapies with a collaborative, individualized approach. The company operates eight facilities in Arizona.
The concept of masking has become increasingly discussed within the last five years or so as autism therapy industry workers began to listen more to the first-person lived experiences of autistic adults, according to Jessica Belokas, clinical vice president at Ally Pediatrics and board-certified behavior analyst.
’It’s hard to identify’
Certain behaviors that may not feel comfortable or natural to autistic individuals may be considered more socially acceptable, leading these individuals to put on a specific persona.
Autistic individuals may also hide certain behaviors, like self-stimulatory behavior or “stimming.” Examples of these behaviors include hand flapping, walking on tiptoe, or playing with a small object, among many others.
Masking is more common in adolescents and adults than in children because masking behaviors are taught or enforced by others.
“I see it start to show more when social pressures start to happen,” Belokas said. “It’s hard to identify for those young adolescents. Some adults now are starting to realize, ‘Oh, that’s what I’ve been doing.’ Giving a label to it is actually quite liberating, to some extent, to recognize when it’s happening and why you’re doing it.”
Both males and females mask, experts told ABN, though these behaviors appear to be more common in females. This may contribute to the lower diagnosis rates among females, Belokas said.
Autism spectrum disorder (ASD) is nearly four times as prevalent among boys than girls, according to the CDC.
While these behaviors may fit in with certain social standards, they can take a lot of effort, and lead to fatigue and burnout, according to Suzanne Goh, co-founder and chief medical officer of Cortica.
San Diego-based Cortica has 23 centers across the country and offers diagnostic assessments, ABA therapy, developmental therapy, counseling and medical services, including treatment for seizures, sleep disorders, gastrointestinal symptoms and other conditions.
Impacts of masking
Not only can masking behaviors negatively impact autistic people, they can also impact the diagnosis process.
“Because masking means that a person has found ways to minimize or hide certain personal characteristics, the diagnosis of autism might be less obvious, and it may take more time and a more in-depth process to arrive at a diagnosis,” Goh said. “The usual diagnostic assessments might not indicate a diagnosis of autism at first, so it’s the role of the clinician to recognize when this might be the case and to look deeper.”
The difficulties can decrease diagnostic rates, keeping people out of care. It can also lead to misdiagnosis, in which autistic individuals receive diagnoses of anxiety or depression because of the toll of masking, according to Vosa.
In these cases, clinicians may need to ask more detailed questions or gather more information over time, Goh said.
Masking behaviors may also require specialized treatment plans designed to encourage autistic individuals to recognize that they don’t need to mask in order to meet their goals, Belokas said. ABA therapy can inform autistic individuals of mechanisms to engage in accommodations or support systems and teach coping skills and self-advocacy.
“The approach to care should include guidance from a mental health professional who can help the person reach a better understanding of the ways they mask their unique characteristics, what effects masking has on their mental and physical health, and what alternatives might be available to them,” Goh said. “Ultimately, the goal is to support the person’s unique identity and the expression of that identity in ways that support lifelong physical and mental health.”
Autism therapy providers can also educate family members about what masking behaviors are and the fact that they are unnecessary to maintain strong social relationships, Belokas said.
The provider’s role
Clinicians can, despite the best of intentions, reinforce masking behaviors. Both speech and ABA therapies have histories of supporting autistic people with autism by “helping them seem more normal,” Vosa said.
For example, clinicians often encourage children with autism to maintain eye contact as a communication skill. Maintaining eye contact can be extremely uncomfortable, or even painful, for autistic individuals, according to Vosa.
She suggests autism therapy providers take on a more neurodiverse, affirming approach.
“I’m fortunate that I get to work with very young children who are newly diagnosed, and so my work is heavily to make sure I’m not teaching masking behaviors because I don’t want it to impact them later,” Vosa said.
Overall, more education is needed to help clinicians understand how masking works, the impact it can have on an autistic person’s mental health, Belokas said.
Not many professionals discuss or educate others about masking behaviors. Neurodiversity is not taught in the behavior analytic course curriculum that is required to become a BCBA, Belokas said. Providers therefore must actively seek out education on the topic, though many may not do so.
“If they’re not shifting their practice into an affirming approach, and they’re still working in some of the old therapy approaches, they may be causing more harm,” she said.
