Chances are, you’re probably surrounded by people on the autism spectrum yet don’t know it. What does high functioning autism (HFA) — formerly called Aspberger’s — look like? It’s even more difficult to recognize in women and girls. Sometimes, I can spot it but not always. Quite often, people with autism spectrum disorder (ASD) or HFA don’t look or seem any different from neurotypical people. Maybe, somehow, we’re all “on the spectrum.”
Recently, a therapist with some expertise in HFA in women completed my ASD evaluation. After a series of clinical interviews during four 1-1/2 to 2-hour appointments using valid and reliable testing instruments, the result was I have autistic traits but didn’t meet criteria for an autism diagnosis. The therapist is a licensed mental health counselor who, based on her training and license, is not qualified to do a full neuro-psychiatric evaluation which my insurance wouldn’t pay for and I could never afford (e.g., $6,500 out-of-pocket is what one psychologist in town charges).
ASD is common in the Ehlers-Danlos Syndrome (EDS) community. I have some form of EDS. My genetic testing shows “variances of uncertain significance for vascular and arthochalasia types.” The connective tissue disorder geneticist/internist researcher I saw is continuing to collaborate with the expert researcher geneticist for vascular type to monitor the research data so that, maybe, in my lifetime, I’ll get a more definitive EDS diagnosis. Because I’m a member of the EDS community, I was open to the possibility of an ASD diagnosis. But, according to the evaluation I got, I have ASD traits but don’t meet the criteria for an actual diagnosis.
Upon further reflection and after talking with the psychologist I’ve been seeing for psychotherapy weekly for several years, I have some doubts about the ASD evaluator’s conclusion. To be honest, I still don’t know for sure. It’s not unusual for a diagnosis of high functioning autism to get missed, even by people who say they have expertise to make accurate diagnoses. Based on what I’ve learned from other women who have high functioning autism, such as Sarah Hendrickx (“Girls and Women and Autism: What’s the Difference?” – https://youtu.be/yKzWbDPisNk), I’m fairly sure ASD has played a significant role in my life and that my ASD traits have had a significant impact on others in my life (“Social and Personal Relationships on the Autism Spectrum” – https://youtu.be/l-Ifwh2QcE8). The evaluator decided that some of the behavior I reported was likely due to EDS — chronic fatigue and pain. I think it’s more likely ASD has played a key role in why I opt out of so many social events. By nature, I’m very social — I scored high on “friendly” traits — but, for some reason beyond EDS, I decide I don’t have the energy to show up. After watching Sarah Hendrickx YouTube video on autism in women, I think that reason’s ASD. Why? Because she sounds like me.
For practical reasons — my age (60), stage in life, how I function — an official diagnosis or label isn’t particularly important. EDS is a part of my life and, therefore, contributes to my sense of belonging and community with other people who have EDS but it doesn’t define my identity. The same is true with ASD. My “tribe” is important to me but a diagnosis or label doesn’t do anything for me or my life. Nobody in my “tribe” is checking my i.d. at the door. If I were still a small child, a diagnosis would help me get healthcare and mental health services and accommodations I needed as a kid. But, that was long, long ago.
What was important to me was to identify what ASD traits I bring to my life and, especially, to my relationships. The neurodiversity couples communications coach my partner and I had been seeing recommended we both get evaluations. The coach thought ASD evaluations would help her identify what ASD traits we each bring to our relationship. Some traits I’m fairly sure we both could tell the coach could identify by observation during our two sessions with her. But, actual data — how we scored in the different domains on the valid and reliable testing instruments used to diagnose ASD — would have been helpful. I was curious and wanted to do my part to help our relationship. So, I got an ASD evaluation. Unfortunately, the testing instruments used are based on the assumption of male gender. My ASD evaluator and I did the best we could with what we had to work with. My partner was invited to provide input. As far as I know, she never did.
People who have ASD traits or are high functioning on the autism spectrum are neurologically wired differently than neurotypical people. The same is true for people with ADD or ADHD. Different — not defective. Much like being LGBTQ, being on the autism spectrum is not something that anyone — intimate partners, family members, friends, employers or healthcare professionals — should seek to change or, worse, “cure.”
What’s important is what’s necessary to be able to function in school, occupationally and socially — to be able to have relationships in life that are healthy and lasting. Whether neurotypical or not, that can’t happen unless people have insight about what they bring to their relationships. Insight’s key to learning how to understand ourselves and each other. It helps with learning how to communicate with each other in ways that are effective — i.e., not over-stimulating or overwhelming, not being misunderstood or inadvertently hurtful. The coaching involves:
- Slowing down the communication.
- Reigning in the volume and intensity.
- Assisting each person with perspective taking to understand each others’ feelings and points of view.
Some people communicate to connect. Others communicate to convey information. Communicating to connect can feel overstimulating or overwhelming. Communicating to convey information can feel emotionally withholding. Without coaching, one style of communicating tends to reinforce the other, leaving both partners feeling misunderstood, criticized, overwhelmed or underwhelmed (as if one partner’s withdrawn and the other’s in hot pursuit) and, ultimately, uncomfortable and unhappy in the relationship.
Much like having EDS or being LGBTQ, having ASD, HFA or ASD traits is simply how people are born. Some ASD researchers even think HFA is a natural part of human evolution. Doesn’t teenage climate change activist Greta Thunberg’s ASD seem like a function of human evolution? She’s called her autism her “superpower.” Especially after hearing how directly and succinctly she demanded world leaders to deal honestly with the climate crisis, her ASD does seem like her superpower. For our survival on Earth, we need more of Greta’s superpower.
Unburdened by “neuroses” that neurotypical people have, people with HFA are usually
- highly intelligent,
- honest,
- innovative.
- capable of creating/finding/seeing solutions that most people can’t, and
- laser-focused on problem-solving until tasks have been successfully completed.
That’s why Silicon Valley companies and other big corporations now view neurodiversity as a competitive advantage. That’s why they’re actively recruiting high functioning autists as employees and leaders.
Neurodiversity is a civil rights issue. Far too many people on the spectrum are unemployed or underemployed when, in fact, they have a lot to offer. Employers need to give people w/ ASD a chance not just because it’s the right thing to do but because it’s really good for business. Employers who’ve done so often discover they’ve made an exceptional, outstanding hiring decision.
On the other hand, people with ASD need to give the neurotypical world a chance, too. Learning social skills that enable them to meet the neurotypical world on its terms is essential. Women autists tend to learn how to “mask” more easily than men. Nevertheless, to some degree, social skills are essential because there always will be a limit to the accommodations employers and people in autists’ personal lives will be able and willing to make.
Chances are, you’re surrounded by people who have high functioning autism or autistic traits yet don’t know it. Neurodiverse intimate relationships, however, present unique and, often, significant challenges. They may look like any other relationship on the outside. But, from the inside, it’s a different story. Intimate relationships require emotional reciprocity. As a result, neurodiverse intimate relationships can tend to be imbalanced, tumultuous and, at times, discouragingly unrewarding for both partners.
Highly intelligent people with HFA “mask” their autism or ASD traits at work, with friends, neighbors, even family. “Masking” can be exhausting. It’s like living in the closet when you’re LGBTQ. Living in the neurotypical world when you have high functioning autism but can “pass” as neurotypical can be a lot of work. It can be daunting, fatiguing and, sometimes, anxiety-producing. It’s possible to “mask” while dating but, once the relationship’s established, it’s not possible to “mask” 24/7 for the rest of your life. Nor is it healthy to do so. “Mask” with the waiter but then relax, be yourself and enjoy dinner with your partner.
Most often, anxiety and depression are the diagnoses given by healthcare and mental health professionals to HFA people. Most therapists don’t know how to recognize HFA. They say they’re too high functioning, too successful, too verbal because their image of what autism looks like is still from having seen the movie “Rain Man.” What the professionals may be seeing but not recognizing are symptoms of autism that usually are being “masked” while navigating an overstimulating, stressful and, at times, unforgiving or, even, hostile neurotypical world.
Especially today.
Today, we’re living in a world that’s dominated by scarcity culture (Brene Brown, Power of Vulnerability). Even neurotypical people fear they’re not good enough. Hardly anyone gets enough sleep. Almost no one gets enough work done. We don’t spend enough time with our families, our kids, our dogs, etc. We don’t get enough exercise. We don’t have time to floss daily. You name it — it’s never enough, we’re never enough. That translates to a culture of shame. Our culture of scarcity is toxic. No one — neurotypical or not — is neurobiologically wired to live like that. As a species, we’re designed to live in cooperation with each other, not competition.
People who have a history of trauma, emotional abuse and neglect and/or ASD traits, even if very high functioning, can lack immediate access to empathy, particularly in their intimate relationships. Despite being very sensitive and compassionate, they can lack the capacity to identify and express their emotions, particularly when under a lot of stress. They can be rigid about their routines and plans. They can experience alexithymia —
“Alexithymia in itself may cause anxiety and related sleep issues (Tani et al., 2004), and the inability to healthily express and externalize emotions could lead to a variety of psychosomatic manifestations which may be manifested as immune, gastrointestinal, and circadian disruptions, all frequently seen in ASD.”
The people I know personally who are on the spectrum — people who’ve told me they’ve been officially diagnosed — are not like “Rain Man,” Bill Gates, Steve Jobs, Albert Einstein or Greta Thunberg. Most are talented and interesting but not famous nor wealthy. They’re just ordinary people who, had they not told me about their autism, I’d never have known. Contrary to the stereotype portrayed in the media, most have great social skills. They’re highly intelligent, sensitive, talented, very accomplished people.
In the ASD community, they say if you’ve met one person on the spectrum, you’ve met one person on the spectrum. Each is different. It’s neither accurate nor fair to generalize.
I was genuinely curious to learn more about myself. And, to some extent, I did. A diagnosis or label isn’t important to me. Instead, I wanted the details — i.e., how do ASD traits manifest in me? What can I do to be more successful in my personal life — especially in my intimate relationship w/ my partner? And, for myself professionally, as a therapist and healthcare policy advocate and consultant, how can I be more successful in my professional relationships?
Neurodiverse relationships aren’t easy. They’re “mixed neurological relationships.” No relationship is easy. But, “mixed” relationships of any kind — e.g., race, ethnicity, culture, age, sexual orientation, religion, ability/disability, etc. — add a layer of complexity that requires each partner to work harder to learn about themselves and each other. I know it’s easier for me to focus on someone else. It’s harder to focus on myself and make changes in my own behavior. Based on the results of my ASD evaluation and honest self-reflection, I’ve got a lot of work to do on me.
For starters, I need an editor. Badly.
Some people are willing to do the work. Unfortunately, some aren’t. Learning how to communicate effectively and build a healthy relationship with a neurodiversity couples communications coach or ASD-knowledgeable psychotherapist can be very difficult work. It’s emotionally challenging and, to be honest, very uncomfortable at times. But, for some, it’s the only way people and their relationships can grow and last. And, that only happens when both partners are willing to do the work. To live a wholehearted life (Brene Brown), however, it’s worth it. That kind of vulnerability requires courage. Not everyone has it. Not everyone wants it. For some, it’s too intense. Too scary. Too deep. Too threatening. Too painful.
I am very grateful to have learned what I have. I have to admit, once it hit me, I felt shocked. I spent a few days feeling a bit dazed. I also felt intrigued and pleased to still be doing significant self-discovery, especially at my age, It’s mind-blowing to learn this about myself now. I’m still digesting it — figuring out what it means for me, what changes I need to make so that my ASD/HFA or ASD traits don’t continue to get in my way and/or cause difficulty or pain for others.
I seriously doubt the evaluation I got resulted in an accurate conclusion. I’ll never understand why, for some people, it’s so threatening to explore whether ASD fits. Why denial, especially when denial is what keeps us going around in circles, sends us into fits of anger and makes our lives so dysfunctional and tumultuous? Why not gain insight and move forward, making us and our relationships healthier? Many ASD women have long histories of serial monogamy. I never knew the contribution my ASD traits made to my lack of success with intimate relationships until recently. That’s not how I want to live my life.
On a positive note, I feel very grateful for the support of good friends, family and therapists who accept and love me just as I am. I know I’m a better therapist now and, even more importantly, I hope I’m a better person as a result of what I’ve learned from this experience. I’m especially grateful to my ASD friends. I’ve got an ASD “tribe” and I look forward to adding to it as I continue to learn from them and explore this part of myself.
Until a formal evaluation is done by a qualified psychologist, psychiatrist or similarly qualified mental health professional, there is no official diagnosis. In fact, it’s a bit of a risk to choose a professional who’s not very experienced with diagnosing HFA (high functioning autism) in adults, especially in women. All too often, the diagnosis gets missed, with the result usually being some form of an anxiety disorder. Hasn’t that always been true — especially for women. For years, women’s health issues have been dismissed by healthcare professionals as “anxiety” or, in the 18th to early 19th century, as “hysteria.”