Issue link: https://www.massageandbodyworkdigital.com/i/1439667
58 m a s s a g e & b o d y wo r k j a n u a r y/ fe b r u a r y 2 0 2 2 TRYING TO ACT "NORMAL" Autism is a spectrum, and every individual on it may exhibit different traits, the most common of which are social communication difficulties (more when speaking than when writing) and rigid/repetitive behaviors to a greater or lesser degree. Though the "Forrest Gump" or more recently "The Good Doctor" stereotype often dominates public views of what autism looks like, in truth, the media attention to these stereotypes has done more harm than good. Not all autistic people are geniuses, not all are blunt or speak in a monotonous way, not all are verbal. 3 Some may "pass" as neurotypical (non-autistic) but doing so requires extreme effort on their part. Known as "masking" or "camouflaging," this means "acting normal" to hide autistic traits; this can cause intense anxiety and other mental health issues. 4 Autistic women tend to do this more effectively, and so miss out on earlier diagnosis and support, leading to the impression that autism is more prevalent in boys (it is not, though it does present differently according to sex, as newer research is beginning to discover). That does not mean it is less severe in women, only that the neurological expression is slightly different. 5 In the UK, 1 in 50 children currently hold an autism diagnosis, and in the US, the numbers are similar but with a strong gender bias (likely due to the stereotypical traits being observed more quickly by parents of boys): 1 in 69 boys, but 1 in 189 girls. This is likely to change as awareness grows. True prevalence in adults is unknown but growing as some parents of autistic children notice their own autistic traits and seek diagnosis in mid- or even late adulthood. AUTISM AND HEALTH CARE In the health-care setting, autistic individuals often face severe challenges that are different for children and adults. There is much literature devoted to pediatric autism, and nonverbal autistic individuals do require multidisciplinary specialist support. This article focuses on the verbal autistic adult, many of whom may already have visited your clinic and may or may not have revealed their autistic status. Though this can be little more than a sketch, it is intended to raise awareness of specific issues among health-care professionals in the hope that more accommodations can be made for this community. Generally, health care is a fraught experience for autistic people, causing intense anxiety, avoidance, and a much lower life expectancy (as young as 36–40 years in some studies). This is not due to autism itself, but largely due to "medical complexities" that include "limitations in language and communication [leading] to physicians, hospitals, and the health-care system not being capable of providing the best level of care," and not seeking "help for their ailments because they are overwhelmed by the awkwardness of talking with other people about themselves." 6 Suicidal ideation is much higher among the autistic community than in the general population, as is severe, ongoing bullying— from the classroom to the workplace to cyberspace. 7 Bullying and social stigma are key factors leading autistic people to mask and try to compensate, or pass as "normal," but the effort is exhausting and often fails, only resulting in further exclusion and, critically, increased suicidality for which masking is one of the main predictors along with unmet support needs. 8 Among those needs are standard health- care provision and anxiety support. Crucial to both is the ability to access that health care without being forced to camouflage to be taken seriously. A revealing study aiming to "identify and compare barriers to health care experienced by autistic adults" notes that compared to adults without autism or other disabilities, autistic adults encountered "different and greater barriers to health care, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and health-care navigation. Top barriers were fear or anxiety (35 percent), not being able to process information fast enough to participate in real-time discussions about health care (32 percent), concern about cost (30 percent), facilities causing sensory issues (30 percent), and difficulty communicating with providers (29 percent)." 9 It must be emphasized that this does not refer to people seeking treatment for autism, but to autistic people seeking standard health care for anything from a bad back to cancer. The problem ranges from desk staff and pharmacists to senior clinicians. The "limitations in language and communication" is the first point that every health worker, at any level, in any discipline, should have a basic grounding in, because it does not only refer to nonverbal autistic people (who do indeed require additional support). Autistic people who are perfectly capable of expressing themselves in speech frequently display particularities, or quirks in their body language, in how they describe a problem, how they understand the answer, and how far they are able to comply with a therapeutic regimen. Noncompliance is often interpreted as stubborn willfulness, yet may result from anxiety at changing routine, fear of the unknown, unusual anxiety triggers, or a too-literal interpretation of the therapist's explanation. Depending on their particular combination of autistic traits, they may also demonstrate one or more characteristics including rigidity in thinking and behavior, altered sensory sensitivity and/or a high pain threshold, and differences in emotional regulation. 10 AUTISM AND BODYWORK In the massage therapy context, all these characteristics are significant, and all can be managed with awareness and compassion. Since integrative health care and massage specifically have shown promising evidence of reducing autistic anxiety, improving sensory integration difficulties, and assisting with developing coping mechanisms and increased quality of life, it is all the more important that this community is able to provide the care that autistic people need. 11 Most of the evidence for the benefits of massage and similar treatments is found in occupational therapy, psychiatry, and autism-specific journals, rather than in