What does autism “look” like in a high-functioning adult female? An initial, self-directed inquiry w/ help from online screening instruments.

69233496_10157702667918559_6124442700591661056_oUntil 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.”

I’ve seen a psychotherapist for many years during my adult life. I’ve been a licensed psychotherapist myself since October 1995. What was thought to be depression in my 20s was actually situational and, even more so, physical. I have a rare genetic connective tissue disorder that causes significant fatigue for which I didn’t get an official diagnosis until just a few years ago.

At times, because of life’s circumstances — e.g., having bought a house with a $1500+ mortgage in July 2009, then getting fired from my job for the first time ever in my life in September 2009, in October 2009 — still in the midst for the biggest economic recession in our lifetimes — my symptoms probably did meet the criteria for generalized anxiety disorder or a diagnosis that’s not in the DSM V — “financial PTSD “– which, unfortunately, is very common and growing more prevalent as income inequality has continued to grow. I heard on the news yesterday that income inequality is now at the highest level it’s been in 50 years.

My personal journey with autism began with learning about autism spectrum disorder (ASD) and, in doing so, learning how to recognize ASD traits in others. After spending probably almost 18 months perseverating (another one of my ASD traits, by the way) on others’ autistic traits, characteristics, symptoms and struggles, I completed the Autism Spectrum Quotient and Ritvo Autism Aspberger’s Diagnostic Scale online. The results of both showed I have autistic traits and, therefore, should get a evaluation from a qualified professional.

I wasn’t completely surprised. There’s a lot of overlap between the Ehlers-Danlos Syndrome and ASD communities. However, even then, it took another month, maybe less, for me to step back from focusing on other people to ask myself, “Why do I understand what I’ve observed in that person? Where am I getting that insight?” I realized it wasn’t just from what I’d been reading or from talking with my EDS friends or other friends who’ve disclosed to me that they’ve been diagnosed with HFA (high functioning autism). Had they not “come out” to me about their ASD, I never would have known. Then, it finally occurred to me — what if I have ASD? It’s a diagnosis often missed in adults and, especially, in girls and women. And, from what I had learned, an ASD diagnosis would explain a lot about my life — from childhood through adulthood. It was a bit mind-blowing to learn something so fundamental about myself at the age of 60, the beginning of my third act, as Jane Fonda would say.

So, here are the results of the online screenings I did this week:

  • Autism Spectrum Quotient (Psychology Today) – score 21 out of 50, 0-25 means few or no autistic traits. Description: The Autism Spectrum Quotient is a valid and reliable instrument used by clinicians who use psychological testing to evaluate clients to rule in/out Autism Spectrum Disorder (ASD), including HFA (high functioning autism) in adults.
  • Autism Spectrum Quotient (www.aspietests.org) – score 27 out of 50, AQ-10 score = 10.  Description: A score of 32 or above indicates a high probability of an autistic spectrum disorder. AQ-10 is an experimental short form of the AQ using 10 of the most statistically effective questions. A score of 6 or above indicates a high probability of ASD. Note that this is probably less accurate than the full test.
  • Ritvo Autism Aspberger’s Diagnostic Scale Test – score 30 out of a possible score of 42. Description: Scores of 14 and above are considered indicative of Autism Spectrum Disorder
  • ADDitude site’s screening – score 61%. A score of 52% or more indicates potential ASD. Description: Adapted from the Autism Spectrum Screening Questionnaire, designed to screen the possibility of ASD and is for personal use only. This is not a diagnostic tool.

On Tuesday, I have my first appointment — 1-1/2 hours — with a professional to do an evaluation that will require 4+ hours total.

People who are high functioning on the spectrum are neurologically wired differently than neurotypical people. The same is true for people with ADD or ADHD. We’re different, not defective. Much like being LGBTQ, being on the spectrum is not something that family members, employers or healthcare professionals should seek to change. Although its important to keep the diagnosis in the DSM to make it possible for people w/ ASD, especially lower-functioning (e.g., non-verbal) people, to get the services they need to learn how to survive and navigate in a neurotypical world, much like being LGBTQ, being on the spectrum is simply how people were born. Some ASD experts think high functioning autism is a natural part of human evolution — unburdened by the “neuroses” that most neurotypical people tend to have, people with high functioning autism tend to be highly intelligent, honest, innovative (capable of creating/finding/seeing solutions that most people can’t) and laser-focused on a problem-solving task until it’s successfully completed. That’s why so many Silicon Valley companies and other big corporations now view neurodiversity as a competitive advantage and, therefore, actively recruit employees who are on the spectrum.

Neurodiverse relationships, however, tend to present unique challenges. Although high functioning people on the spectrum often are highly accomplished and can “pass” as neurotypical in every other aspect of life, because intimate relationships require a certain amount of emotional and practical reciprocity, neurodiverse intimate relationships can tend to be challenging. Learning how to communicate effectively can help, especially when both partners are willing to do the work.

I’m no Bill Gates and I know from what I’ve read about him and his life and the documentary I watched about him last week, at times, it’s been no walk in the park for his wife, Melinda. Ditto for Steve Jobs and his wife…ex-wife. They say in the ASD community if you’ve met one person on the spectrum, you’ve met one person on the spectrum — each is different and it’s not accurate nor fair to generalize.

I’m curious to learn more about myself. The diagnosis isn’t important to me. But, I’m very interested to learn in more detail, how ASD maybe manifests in me and what I can do to be more successful in my personal life and as a therapist.

I’ll let you know how it goes. 

 

Debunking Cassandra Affective Deprivation Disorder

As a psychotherapist who’s seen neurodiverse couples and families, here’s my perspective on the “Cassandra phenomenon” in neurodiverse relationships, also known as Cassandra affective deprivation disorder (CADD). First of all, despite how “official” it sounds, it doesn’t exist in the DSM-V or ICD-10. It’s not a real diagnosis. So, with that in mind, here goes but, first, let me give you a hint of what’s to come. People who “suffer” from Cassandra affective deprivation disorder (CADD) are “snowflakes” who need to either grow up or get out if they can’t handle being in a neurodiverse relationship.

Now, to be fair, it’s not easy to be in a neurodiverse relationships. Research shows that autists do better with other autists and allists do better with other allists. No surprise. Diversity of all kinds can be challenging. It’s also what makes life interesting.

It’s true. People who have autistic traits do communicate differently from neurotypical people. Autists are different. So, when autists are in relationships with people who are allists — i.e., neurotypical (aka, whatever “normal” is) — they often misunderstand them.

Personally, I think the biggest myth is that people who have autism, Aspberger’s and/or autistic traits — whatever terminology you prefer — don’t feel emotions. That’s simply not true. Not expressing emotions may, in fact, mean that autists are, in the moment, so overwhelmed by the intensity of emotions they’re feeling that they are not able to identify and/or communicate them in that moment. That’s why autism’s considered a social communication disability.

However, if you understand autism and how it manifests in each of person — and it manifests differently in each person and each person is also a unique individual separate and apart from their autism and/or autistic traits — then, people can learn what to expect from them. But, to demand that autists behave as if they’re neurotypical is absurd and wrong, as is to take it personally when they don’t act as if they’re neurotypical.

Unfortunately, taking things personally tends to be human nature, especially in today’s culture. As social scientist relationship researcher Brene Brown says, we live in a culture of scarcity that leads us to wake up each morning asking ourselves, “What should I be afraid of today?” and “Who’s to blame?” Autism is a social disability because autists are a minority in a predominantly neurotypical world. For that reason, there are times when autists will mask to meet the neurotypical world on its terms. But, in intimate and family relationships, autists need to be able to be themselves.

If their partners and/or family won’t allow that, then they will retreat to be by themselves and/or will shutdown or meltdown. Sadly, those behaviors — which are naturally self-protective — will possibly be misinterpreted through the narcissistically wounded lens that says that behavior’s directed at their neurotypical and supposedly “normal” partner — e.g., he doesn’t love me enough, she doesn’t find me attractive, he doesn’t want to be around me, she doesn’t want to spend time with me — when, in fact, it has nothing whatsoever to do with those people.

Masking (i.e., pretending to be neurotypical) is exhausting. Sometimes, people who live a demanding life in the neurotypical world just need a nap. Or to engage in a project. Or to play video or computer games. Or focus on a special interest.

Sometimes, everyone — autistic traits or none — simply need to be themselves and be accepted for the needs they have for self-care.

The message here to people who’ve decided they’re suffering from CADD — get over it! Take care of yourself for awhile. Stop being so demanding and needy. Chill. Go entertain yourself. It’s not all about you! In fact, it has nothing to do with you.

Here’s the deal that’s on the table waiting to be negotiated: Let autists be themselves. Give them time to process, shutdown, meltdown, nap, etc. Although the response neurotypicals are wanting may come a day or even a few days or a few weeks, few months or few years later, more than likely, autists will more than make up for the delay by blowing your mind with their insight and empathy that, in the moment, neurotypicals thought they didn’t have because, in that moment, their partner or family member was too overwhelmed by the intensity of the emotion or too busy processing their thoughts and emotions to respond.

The bottom line is this: People want what they want when they want it. Expectations are planned resentments. Pragmatically, life inevitably will, at times, be difficult and disappoint us. We’ve all got to deal with life on life’s terms. People have to accept responsibility for the baggage they’re carrying around — including ableist asssumptions that translate to expecting autists to behave like allists. People with CADD have got to learn to stop taking so much stuff personally. The world doesn’t revolve around them. To me, that just means that these folks who claim to have Cassandra affective deprivation disorder need to grow up and become culturally competent because the truth is we live in a very neurodiverse world. Is it easy? No. Is it worthwhile? That’s a very individual and personal decision that only you can make.

That’s my 2 cents. Thanks for reading!

Cassandra affective deprivation disorder

Acceptance of square pegs in a world full of round holes

International autism expert psychology Tony Attwood PhD.

(People with autism spectrum condition) are the ultimate square pegs. The problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg. — author, Paul Collins

 

Neurodiversity surrounds us

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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.