Near the end of 2018, I began to suspect I might be autistic. The suspected link between autism and Ehlers-Danlos Syndrome got me thinking about how certain symptoms, characteristics and personality traits of mine line up with an autism diagnosis. I was suspicious enough to take an online test which led to a bit of research and an evaluation with a psychiatrist in January.
For months I’ve been trying to unlock my thoughts and feelings about my autism evaluation so I could share it with my readers and the people in my life. Now that it’s Autism Awareness Month, I’m forcing myself to unclench these jaws and speak about it (metaphorically, as it were). I’ve had difficulty sorting my thoughts and feelings because neither the evaluation nor its conclusion were anything like what I hoped and everything like what I anticipated and yet, I am still somehow at a loss as to how to proceed.
After testing fairly high on the online test I took, the psychiatrist told me I’m not on the spectrum at all, but have similar traits that are more likely caused by attachment disorder. He added that I do hold a lot of similarities: However, it was his opinion after his 15 minute conversation with me that I don’t have it.
Why would he come to this conclusion and possibly be wrong? First, He tested me as if I was a male child, failing to recognize there is a distinct difference between the sexes in autism. While my score on the questionnaire was sufficient for diagnosis, because the doctor didn’t know what to look for in a female with autism. I know this to be true because when I questioned it after the fact, he told me no such differences exist. He instead diagnosed me with an attachment disorder, a diagnosis I already had. According to Kim Wutkiewicz writing for AANE:
Women with Asperger profiles are less likely to be diagnosed and more likely to be misdiagnosed for a number of reasons. Additionally, many professionals have been trained to recognize typical Asperger/autism spectrum expression more easily in males than in females. While many professionals and advocates are working hard to change this reality, there is still a long way to go in terms of universal understanding and recognition of the unique gifts and challenges of Asperger women. While the core characteristics of an Asperger profile does not differ between genders, girls and women might demonstrate different outward reactions to the profile. While every girl and women [sic] with an Asperger profile is unique, many share certain experiences.
While I hate to argue with yet another diagnosis (or lack thereof), it’s hard to ignore all the evidence screaming to me that I am autistic and hear once again, from yet another doctor, “Sorry. You’re wrong.”
If my only symptom were sensory overload, I’d concede the root cause of this problem is several fold and definitely doesn’t mean I have autism. After all, the fibromyalgia, migraines, or POTS alone would be enough to explain it, if it had been sudden onset with these illnesses, but it was not. I have struggled with sensory overload my entire life, but had no language to articulate it had anyone listened to my complaints. My father thought my extreme sensitivity was hilarious and would tickle me until I turned blue. Maybe he thought I was laughing. My sister thought my sensitivity was so funny, she used to say I was ticklish through airwaves. My mother, who experienced the same things and had much the same disposition would become livid about this when she rarely ever defended me when it came to anything else.
If crippling shyness were my only issue, I’d be all too happy to say that it’s all about the lack of nurturing and care in my early life. Torture tickling was the least of my early childhood nightmares. But this list, compiled from several sources on women with autism, could easily be speaking about me specifically:
Autism Expression in Women and Girls
- As a young girl, she may know that she is different, noticing that her interests veer away from those of her peers. She may prefer having only one or two friends, or to play in solitude, having an appreciation of and focus on specific interests.
- She might demonstrate an aversion to what is popular, what is feminine, or what is fashionable. Sensitive to textures, she might prefer to wear comfortable, practical clothing.
- She might appear naive or immature, as she is out of sync with the trends or the social norms.
- She might work very hard to “camouflage” her social confusion and/or anxiety through strategic imitation, by escaping into nature or fantasy, or by staying on the periphery of social activity.
- She might show different sides of her personality in different settings. “A girl with Asperger’s syndrome may suffer social confusion in silence and isolation in the classroom or playground but she may be a different character at home, the ‘mask’ is removed.” (Tony Attwood). At home, she might be more prone to releasing her bottled up emotions through meltdowns.
- She might be exhausted from the work of deciphering social rules or of imitating those around her to hide her differences.
- She might be anxious in settings where she is asked to perform in social situations. This could lead to mutism, escapism, or a focus on routines and rituals.
- Frequently, women with Asperger profiles, like neurodiverse men, have intense special interests; however, these special interests can follow different sets of themes. Historically, women have been less likely than men to be interested in transportation, computers, or astronomy, and more likely to be passionate about literature, the arts, animals, environmental activism, and other topics with relational themes. That said, when it comes to special interests, anything goes for both genders.
- Females with ASD’s often develop “coping mechanisms” that can cover up the intrinsic difficulties they experience. They may mimic their peers, watch from the sidelines, use their intellect to figure out the best ways to remain undetected, and they will study, practice, and learn appropriate approaches to social situations.
- Difficulty with social communication increases with age for autistic females.
- She may rely heavily on other children to guide and speak for her, suffering more social issues as she gets older and this behavior becomes less tolerated by peers.
- She may have issues with anxiety, depression or moodiness and seem unpredictable.
Why Women Are Underdiagnosed
Misdiagnosis is only a small part of the problem. Many girls on the spectrum are missed entirely and there are a number of reasons why this may be. It was once thought that autism and aspergers were conditions that only affected men, an idea born thanks to Hans Asperger himself, according to Grant Satchell. For this reason, it’s only just come to light in the last decade that the true gender statistics could be as high as 1 girl to every 3 boys who have autism.
While Hans Asperger eventually came to his senses, much of the damage was already done. How autism spectrum disorders presents in women would not be examined for many decades to come, leaving many girls and women who mask well (typically better than men do) to fend for themselves.
Even though we now have this information, these changes can be slow to disseminate or even be included in the DSM and autistic girls and women are still being missed in doctor and psychiatry offices around the world. Lisa Jo Rudy notes:
Girls who have overt symptoms such as obvious self-stimulating behaviors (stims), extreme difficulties with speech and language, severe difficulties with social communication, or significant cognitive challenges, are usually referred for evaluation and diagnosed at a young age. But girls whose symptoms are subtle, or whose intelligence level allows them to mask symptoms, may only be diagnosed as pre-teens or teens.
Being in this latter category, I worked very hard to cover my differences my entire life and only rarely succeeded. I always had a best friend who took care of all of my social needs, spoke for me and helped me obtain what I was too afraid to do for myself. Thinking back now to how these people functioned as the touchstone of my universe and often became one of my intense interests, I feel shocked and embarrassed by everything I put them through.
I spent countless hours playing pretend and trying to figure out how better to fit in. I did have some terrible stims, for which I was castigated frequently, but it was certainly never treated as anything that could indicate a problem. My nail biting was simply a “nasty habit” that I had to stop… “and why must your leg always bounce like that, a mile a minute? Just relax!” I also practiced self-harm as a teenager, a fact that I’ve revealed to no one but my husband until now.
Despite how well I seem to hide, I do have my cognitive issues and deficits, things that I’ve been dealing with my whole life, as well as things that have become a problem since the surge in my chronic illness the last 10-15 years. It’s difficult to tell if I had learning delays because I was moved around a lot and every time I got into a new school, there were always deficits to contend with. I did poorly in most subjects except English. Yet, despite my love of language, I’m a slow reader. It takes extra time for things to sink in for me.
All of my thought processes are rather slow. This is especially true if I’m anxious and so when I’m talking to someone I don’t know well or there is a group of people, sometimes thought seems impossible and I have a much harder time forming coherent sentences and recalling information. This began long before my PTSD symptoms ever started. I remember vividly how a boyfriend contended that I appeared “unreliable” because it took me so long to respond to questions. These things catch in my anxious brain and become part of the loop of negative self talk I become stuck in when I begin a PTSD cycle.
Speaking of “unreliable,” part of why it takes me so long to respond is because I know I have to contemplate the meaning behind words a bit, because yes, sometimes double-speak like “You seem unreliable” instead of “I think you’re lying” often fly right by me. I don’t always get what’s being inferred and much prefer direct communication styles, something I’m told I am a lot; direct. And while I love metaphor, simile and language play, I sometime take things too literally, or oddly, very metaphorically, when it was never intended that way. And when someone laughs in my face for it? IT STINGS. I am a crafter of words. I fear I’ll be viewed as an imposter when my language deficits are uncovered.
This is how I came to writing. I love that I have the opportunity to tweak and edit and make things perfect so that the world can understand and see me clearly; without the physical awkwardness, the shy tics or the occasional inability to meet another human gaze. It was through my writing that I ever felt fully understood for the first time and I wouldn’t doubt that’s why I worked so hard to turn it into a career; so I could capture that feeling often and share of myself the things I’ve always wanted to as much as to escape the real world.
Am I Autistic?
Until writing this, it’s been difficult to articulate my thoughts on this experience, so I’ve found myself instead in a cone of silence about the whole thing with strangers and friends alike. Am I autistic? I certainly see myself in so much of the work I’ve been reading by autistic writers, their own experiences mirroring my own in so many ways, it feels like coming home, like knowing myself fully for the first time and that I am in no way alone in the way I experience the world and am treated as a result. I feel like I’ve found the pieces to adequately explain why other people have also insisted that I am “quite unique” to downright “bizarre.”
The psychiatrist who half-heartedly attempted to diagnose me does have a valid point about the similarities between attachment disorder and Autism, though. What he seems to fail to recognize, in addition to the fact that he tested me as if I were a male child, is that the DSM-V states attachment disorder as being strongly linked to or a possible cause for autism. In a way, he’s making my case for me.
The problem with diagnoses based on symptoms, which is what the DSM is almost entirely comprised of given that there are few mental health conditions that can be seen on a blood test or scan, is that it’s all very much left open to interpretation and the diagnosticians own point of view. My therapist even pointed out when I brought my concerns to her that many practitioners have their “rote diagnoses,” and one therapist she knows diagnoses every patient he sees with Tourette’s! It doesn’t surprise me that a doctor completely unfamiliar with autism in women couldn’t see it in me, but he was quite happy to give me one of his favorite diagnoses instead.
In the end, I believe he got the diagnosis wrong, which I feared might happen, solely because I was a 46 year old female. The question is, should I continue to pursue diagnosis or let it go and if I don’t do that, do I have a right to refer to myself as autistic? In a way, I really want to put down the fight, feeling that I’ve satisfied my own curiosity and can act on this information on my own to try to help improve the things I am struggling with. I don’t need a certificate, I need the information so I take the right approach to resolving some of my issues.
Of course the problem with this is that if I don’t have a diagnosis, then it’s not on my chart and there are many health concerns specific to an autism diagnosis, especially as one ages. The other concern is that while I’m probably stuck working from home for the rest of my life, I may still benefit from specific accommodations due to my autism and it certainly would make things easier to have a documented diagnosis.
Maybe I don’t need a diagnosis to prove anything. In some respects proof of any mental health diagnosis can have its drawbacks—the fact that autism is even in the mental health realm seems inaccurate and highly problematic to me. After 15 years as the friend and stepmother of an autistic male and much study, I firmly believe it is a health condition with common comorbid mental health conditions and not the other way around. That aside, I certainly could benefit from a diagnosis for treatment. I personally don’t think it’s ever too late to get a diagnosis of any type, especially one that’s suspected to be a genetic disorder or mutation, such as autism. I put just a few ideas why in the graphic to the left.
These questions are important to me and I’d love your input on it, most especially if you’re on the spectrum yourself. I certainly don’t have all the answers. Some people I’ve talked to seem to take the attitude that I’m wasting my time; that it’s something you shouldn’t worry with beyond childhood, but I think that simply points to the ignorance surrounding the diagnosis. It’s not a learning disability. It’s not something you grow out of, though autistics certainly do grow and change. Whatever the mechanism driving it, Autistic brains work a bit differently. The behaviors some see as strange are how autistics accommodate those differences. That’s why autism is considered neurodivergence; because it covers a whole range of disorders that cause diversity in the way autistics receive, process and respond to the world.
Despite my own place on the Autism spectrum still being up for question, I’ve decided ASD is something I would very much like to cover at the Zebra Pit, at least current news, studies, etc. It has a high comorbidity rate with EDS, it is a rare condition that’s largely thought to be genetic in nature, it’s neurological and as an autism mom, it’s something near and dear to me.