In Unmasking Autism, Devon Price describes his own experience with learning about Autism and receiving an Autism Spectrum Disorder diagnosis as an adult; and utilizes his personal experience, expert research, and the experiences of other Autistic adults he has interviewed to explain Autism, the Autistic experience, the diagnostic process (with its shortcomings, and in particular how it applies for adults who were not diagnosed as children), and the various ways that Autistic individuals mask their Autistic traits (whether via compensating for or concealing them), as well as how that masking impacts their health (physical, mental, and emotional). He discusses the process of unmasking, with the benefits and risks associated with doing so. Finally, he envisions what a world/society which openly accepts and accommodates neurodivergence would look like, and the ways in which such a society would be beneficial for all types of people.
I highly recommend this book to anyone who wishes to better understand Autism, or even neurodivergence in general. I especially recommend it to anyone who is going through the process of realizing they may be Autistic, has been recently diagnosed as Autistic as an adult.
It is incredibly important to learn about Autism from those who actually have it, rather than from the outside perspective of those who are looking to make it more palatable for neurotypical people and easier to deal with (or disregard) for the neurotypical expectations of society. This book is an excellent step in that process, as Price shares both his personal insights as an Autistic individual, and references the personal stories of many other Autistic individuals.
For me, Unmasking Autism was an incredibly helpful, profound, and personally significant read. It helped significantly in my own process of trying to come to terms with myself, and to better understand and be kinder to myself. I have decided to share the context for that here, although it is admittedly quite a step beyond simply reviewing this book.
I picked up Unmasking Autism because it was recommended to me by a friend after we connected over the fact that we have both embarked on the journey of self-discovery that is realizing that we might be Autistic.
I have dealt with chronic ailments for my entire life; I cannot recall a time when I was not in pain or not experiencing fatigue. I've long been accustomed to being disappointed by medical professionals, and to my ailments being dismissed or downplayed because diagnosis was not simple. I was labeled a hypochondriac by my primary care physician as a child. I was eventually diagnosed with several things, but the diagnoses never felt helpful, and were never paired with actual understanding or treatment options. I have been diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, acid reflux disease, Generalized Anxiety Disorder, Major Depressive Disorder, Seasonal Affective Disorder, and a whole host of other issues which are largely diagnosed as a negative rather than a positive diagnosis (i.e., no test to prove it; the persistence of symptoms despite testing negative for every other option is what leads to diagnosis instead). Some of my other conditions/medical issues include psoriasis, suspected psoriatic arthritis (I lack the money to get the MRIs necessary to complete that particular negative diagnosis by ruling out all other possibilities), eczema, and frequent ear infections with a resistance to antibiotics. Most recently, I was diagnosed with C-PTSD.
A number of members of my family on my paternal side have been investigating health problems that appear to run in the family, and as part of that process we are learning that hEDS runs in the family, along with some other genetic markers tied to other hypermobility and collagen deficiency disorders.
In my research into EDS and associated conditions, I discovered that there is a genetic tie between EDS and Autism. As this article from the Journal of Personalized Medicine in December 2020 states in its conclusion:
Although autism is defined neurobehaviorally and EDS/HSD by various articular and extra-articular connective tissue manifestations, these two conditions share considerable phenotypic overlap at various levels. Genetic data indicate similarities at the molecular, cellular, and tissue levels . . . . EDS/HSD and autism comorbidity and familial co-occurrence lend further credence to this relationship, suggesting potential links via the maternal immune system.
The authors of the study go so far as to further propose "that hereditary connective tissue disorders represent a subtype of autism whose prevalence is currently unknown, although the common nature of HSDs (and likely hEDS) suggests it may comprise a significant minority of autism cases."
(Full citation for the article: Casanova, E. L., Baeza-Velasco, C., Buchanan, C. B., & Casanova, M. F. (2020). "The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders." Journal of personalized medicine, 10(4), 260. https://doi.org/10.3390/jpm10040260)
Autism is known to run in my family (in the generation after mine--my siblings' kids--a number have been diagnosed, and it was suspected in some member of my generation). Upon learning of this link between hypermobility spectrum disorders (HSD) and Autism spectrum disorder (ASD), I started to read more about and learn more about ASD, in particular how Autism looks in adults. This then led me more specifically to studying how ASD looks in adults who 'mask' and who have reached adulthood without ever having been diagnosed. Curiosity and a sneaking suspicion about myself led to me taking the RAADS-R.
As you can see, I scored 130, putting me well within the 'likely Autistic, pretty certainly neurodivergent' range. Self-doubt is strong within me, so I immediately questioned whether I had, perhaps, simply done a very bad job of answering the questions involved. As a form of self-checking, I asked my husband to take the RAADS-R as well; his score (86), while greater than 65, was significantly lower than mine.
Nonetheless, I still didn't quite trust that my RAADS-R results really meant I am likely Autistic. I thought, for example, that maybe I'm just bad at tests, or maybe it's not as accurate a screening as it's billed to be. However, I then found out about the CAT-Q. The CAT-Q, or the Camouflaging Autistic Traits Questionnaire, is a self-screening tool aimed at identifying Autistic individuals who may not currently meet diagnostic criteria for ASD due to their social camouflaging behaviors, which mask their Autistic traits. I took the CAT-Q, and again had my husband also take it to compare scores.
In addition to my more general contemplation of my life experience and my comparison of my experience with others who are Autistic or some other variety of neurodivergent (gathered via TikTok, Reddit, and other social media), I now had two self-screenings that strongly indicated I am, indeed, Autistic (with some well-honed masking skills). While it appears my wonderful husband is also most likely neurodivergent in some way, I'm scoring far higher on the Autism-specific tests, and have genetic reason to think it's likely I may have ASD. Seeing this, but still deep in my well-practiced self-doubt, I decided to take whatever additional screening I could find, and came across the Aspie Quiz.
Note: "Aspie" is a term used to describe a person with Asperger's syndrome. Asperger's syndrome falls within ASD, and I am in strong agreement with those who do not think it should be a separate diagnosis at all (especially given the context of Hans Asperger's Nazi ties and eugenicist mindset).
The Aspie Quiz is another self-administered questionnaire, and it measures both Autistic and neurotypical traits, then compares the scores from each against each other.
My Aspie Quiz results are as follows:
Your broader autism cluster (Aspie) score: 167 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely on the broader autism cluster (Aspie)
All three self-screenings, plus identifying with a lot of the description of what Autism is like, led to admitting in a Discord community that I am exploring the possibility that I'm Autistic, which led to a friend saying she is, too, which led to the recommendation of Unmasking Autism. Reading this book further solidified for me that I am, more likely than not, Autistic.
Why do I mention all of the above here? I hope that transparency regarding my own journey of self-discovery might help others on their own journeys, and might also help mitigate some of the stigma and stereotypes that surround ASD.
There is a lot more that I would like to say on this topic, but I'll leave it here for now, as this really was meant to be primarily a review of Unmasking Autism - and as the subject is close enough to me I've been struggling to get this written since I read the book 4 months ago.
Elizabeth Wilcox. Writer, Avid Role-Player, Amateur Mixologist. Survivor.