FAQs that Newly Diagnosed Women Get Asked

Thanks for visiting my handy knowledge base stuff that grown-ass, just-diagnosed autistic women get asked about neurodivergence. Apparently the questions people ask newly diagnosed people have a lot in common.

Some of these questions are great! Others I’m posting so you don’t ask them. You’re welcome.

Full disclosure: I have been asked some, but not all, of these questions. I have asked some of them myself. The rest of them are things I’m waiting to be asked because apparently, they’re common. I’ve also posted questions that, when catastrophizing, I wonder if people will ask. We’re equal-opportunity here at the FAQ’s!

Thanks to fellow autistics and other writers like DL Mayfield, Devon Price, Jenara Nerenberg, Steve Silberman, Meg Eden, Amber Rice, and Daniel Bowman, among others, who have educated me about my diagnosis and helped me answer these questions.

When did you get diagnosed with autism?

I first took an online assessment for autism in early October of 2022 and scored on the spectrum. After five sessions with a therapist that specializes in adult autism in December, she diagnosed me with autism in January of 2023.

Have you been wondering if you were autistic for a long time?

Not at all. However, I have suspected I have ADHD for about five years. Turns out many autistics also have ADHD. They’re interrelated.

Then….why did you take an autism assessment?

A writer I admire tremendously, DL Mayfield, got diagnosed recently, and on her Substack about neurodivergence, I found her posts fascinating. I was told my brother was autistic growing up (he’s not) and my sister has ADHD, so these topics are personal for me anyway, even if I didn’t think I was on the spectrum.

Mayfield invited everyone to take an assessment in one of her posts, so I did it on a lark, never suspecting I’d test positive.

But can an online test really be trusted?

According to Dr. Natalie Engelbrecht ND RP of Embrace Autism, the tests are pretty darn reliable. In the assessment I took first, nearly 80% of already-diagnosed autistic people score on the spectrum, while only 2% of the control group does. The test is even more accurate (92.3%) for Autistic women.

Still, though, diagnosing yourself is probably a bad idea, right? I’m glad you went to a specialist!

Don’t write off self-diagnosis. I’ve learned the autism community is VERY accepting of it. Here’s why: “official” assessments are 1) hard to find, since trained specialists are rare, 2) assessment is very expensive, and 3) not necessarily accurate. Many so-called “experts” have no clinical experience with adults and/or women, and thus are poorly equipped to recognize their experience.

Autism is not like diabetes—there’s no physical exam that a specialist can do that’s more accurate than the autistic person’s own understanding of themselves. My own assessment consisted entirely of my therapist asking me about my experiences. After she gave me an official diagnosis (I had all the autistic markers except self-stimulating behavior, or “stims”, like hand-flapping) and explained some of the criteria in more detail, I realized I do stim, for example by reading compulsively. (I’m guessing not every six-year-old reads the dietary info on cereal boxes every morning). The expert evaluation was very helpful, but it wasn’t completely accurate either.

For me, the extra layer of confirmation is helpful, but I could also afford the fee, and was able to find a provider that sees a lot of adult women. But if you can’t do either, diagnosing yourself is a very sane and respectable pathway.

Should I call you a person with autism? An autistic person? Autistic? Help!

I like “autistic person” or “autistic” though I’m still new at all of this. Best practice, like so many names and terms, is to ask the person you’re addressing what they prefer, or listen to what they do, and follow suit. Google “identity first” language to understand the nuance between different terms and why it matters.

Reducing yourself to a label isn’t healthy or helpful.

Hmmmm. I call myself a Christian. Is that unhealthy? What about being an “American”? Or a “woman”?

We use labels all the time. Labels help us understand both our identity, and our relationship and similarities to other people. I am absolutely certain you use them all the time.

So let’s maybe give our reluctance to use the word “autistic” some side-eye. It’s ableist and based in shame.

You seem pretty high-functioning, so does this diagnosis really matter that much?

Can I push back a bit on the word “high-functioning”? Meg Eden, a YA author I met this summer, was the first autistic person I told about what I called my possible “low-level” autism. She did me a favor by critiquing my use of “low-level.”

She wrote, “I would generally recommend avoiding terms like low-level. Autism is a spectrum so it manifests in all sorts of ways, but while terms like low level/high functioning seem helpful in clarifying, they can sometimes cause additional problems, or inadvertently reinforce ableist views of what it means to function well/at a high level. For a while I thought of myself as high functioning, but now I’m like…do I?”

I’ve since learned that disability/autism advocates recommend the terms “high support needs” vs. “Low support needs”. It’s more accurate.

Autism can be disabling in various ways for different people. And it’s worth noting there’s a long history of quite literally erasing people because they had high support needs, and erasing the suffering and needs of people like me who have low support needs while telling them how “great” they’re doing, especially compared to those “really impaired” people. That doesn’t help anyone.

I highly recommend reading the book Neurotribes. It gets into some of the icky history of separating Asperger’s Syndrome and Autism (which have now been merged, thankfully). Devon Price’s Unmasking Autism also explores both the nuance of, say, the different experiences of a non-verbal autistic, and me who has always been hyper-verbal. Yet Price also affirms that we have a LOT in common, and are both better served if everyone acknowledges our kinship.

Honestly, I have often not functioned well with autism. I was just good at hiding my dysfunction—so much so that neither I nor the people around me were able to offer me compassion. My autism is often hard for my husband, for my kids, and for me.

It was especially hard as a kid. I was often told to “live up to my potential” and not be a “lazy learner” while I was terrified and felt like I was lugging a backpack full of rocks to school every day. No one thought someone so “gifted” should be struggling, so no one helped me.

Just because something isn’t obvious does not mean it does not exist or impact someone.

You’re so organized! Are you sure you have ADHD?

I am organized because I have ADHD. Also, I think, because I have autism.

I have almost no working memory. That means that if I am distracted in the middle of a task, I completely forget what I was just doing. For instance, once I handed over my driver’s license to a cashier, glanced down at my wallet a second later, and panicked because my driver’s license was missing. I identify hard with Dory.

I write down everything and keep my desk, purse, and house in immaculate order because if I don’t I can’t find anything, finish anything or think straight. I have a list for everything, both to remember stuff and motivate myself to get tasks done (I also struggle with task initiation). I review my Google calendar in depth once a week, glance at it most mornings, and have two notifications for every event and I still miss appointments or mix up dates.

I am very, very good at systematic thinking and understanding processes because of my autism so I have been able to set up a lot of fail-safes to make up for my poor working memory. But it takes a lot of mental energy to maintain, which is exhausting.

It also feels embarrassing to be so meticulous and control-freaky about how my sock drawer is organized. A year before my diagnosis, I wrote a whole essay for The Other Journal about my Type-A shame in which I compare myself to (the stereotypically autistic) Adrian Monk of the TV show Monk. Turns out I knew more than I knew.

But surely if you were autistic, you’d have been diagnosed in childhood?

If you read Steve Silberman’s Neurotribes you will discover that up till recently, autism research, diagnosis and “treatment” has often been pretty darn mediocre, or even actively harmful. People thought autism was a form of schizophrenia (it isn’t). They thought it was extremely rare (it’s fairly common). They felt sure it almost always occurred in boys (nope).

They also promoted terrible treatments like “parentectomies” in which autistic children were put in institutions to save them from “refrigerator mothers.” In those insittutions the kids were abused and neglected in horrifying conditions. When those kids did not thrive, their kidnappers doctors assured everyone that meant autistic people always stay profoundly impaired.

If all that weren’t terrible enough, some “therapists” actively hid more helpful data that might have given us better diagnoses and support for autistic people. Even now, organizations like Autism Speaks work to disempower adult autistics in favor of the neurotypical parents of autistic children.

All this to say: we are barely scratching the surface of effective diagnosis and support for autism right now. In 1977 when I was born? We were clueless.

But you’re so empathetic!

This was the main thing that kept me from even considering the idea of autism for myself. Many autistic people have plenty of empathy. But since 99% of the research has studied adolescent boys—who are perhaps not as empathetic as the general population, and because the media has glommed on to “Rainman” as the single story of autism—this stereotype of unempathetic autistics persists.

DL Mayfield wrote this on her blog: “Hyper-empathy is definitely an autistic trait! It seems to be a natural part of having a hyper-attuned nervous system—some people are so aware of others and their feelings that they have to shut down.”

Are you just saying you’re autistic because it’s trending on TikTok?

Um, no. I can’t even figure out Spotify.

Also, the fact that many teenagers and young adults are exploring complex identities on TikTok is not a good reason to assume the questions they’re asking are bogus, or that they’re entitled or co-opting. Maybe they are, but maybe they’re also just asking good questions and destabilizing our often-toxic status quo. Let’s treat younger people with respect, shall we?

You know, there are therapies that could cure you of autism!

Hard pass! I don’t need to be cured. I’m fine just the way I am. If anything, I want to lean harder into autism so I understand my gifts and limitations and act with more kindness towards myself.

Isn’t you not wanting to be cured of autism just like a depressed person refusing to take their meds?

I’ve been depressed, and it is nothing like autism. Depression is a crushing weight that saps your will to live. When I was depressed, I did not feel like myself. I felt like nothingness, anxiety and shame personified. Believe me, it would not make for good cosplay.

Autism, in contrast, is intrinsically bound up with my human experience. Leaning into it feels like being more like myself. It’s not always a lack—sometimes it’s like having more senses and perception than others. Other times, it’s like having less.

For instance, I can read text at an astonishing rate, retain all the information, and make unique connections between it and almost everything else I have ever read in ways I know other people find unusual. (They tell me so all the time).

But if I am in the middle of a group dinner filled with people I enjoy, I look around the table, feeling ill-at-ease, absolutely unsure how I can contribute to the flow of conversation.

I wish I felt more at ease in social situations, but I wouldn’t give up the deep pleasure I take from reading, learning and thinking in exchange for easy gregariousness. I like me, as-is.

In contrast, I have worked so hard to address and minimize my anxiety and depression. Those are not states of being I want to stay in.

That’s why I dislike labeling autism a “disorder”. Every single one of the things adults praised me for as a kid were related to my autism. Let’s not the pathologize the struggles of autism while praising its gifts. That’s rank hypocrisy.

Being “autistic” is so common now—isn’t that making the label useless for mental health professionals?

<<Shrug>> Should I care about that?

Here’s why I’m terribly uninterested in this question. It centers the needs of autism “experts” and not autistic people themselves. What makes things clearer for clinicians does not necessarily make life easier for autistic people.

But it’s not either-or, you might say! It’s both/and! We need those experts to have clarity so they can help people who are struggling!

In an ideal world, perhaps. But frankly, we don’t live in that world.

Disability theorists have taught me about the “medical model” of disability. In this way of looking at autism, specialists look at its external behaviors, which they see as “symptoms” of a “disease” and try to get rid of them. For example, ABA therapy trains kids to stop flapping their hands (called “stimming”) so they will appear more “normal” to their peers. Since they see stimming as “abnormal” behavior, experts then “help” autistic people diminish the “symptoms”. Then we call that “curing” the “disorder”.

That’s a lot of air quotes! But I put them there because all these terms are important to question. Stimming, for instance, help autistic people manage anxiety and overwhelm. Erasing it so they’ll appear more normal doesn’t “cure” autism. It makes life even harder for them.

We have used medical models to pathologize other perfectly fine human characteristics, like being gay. There was even a “mental illness” attributed to runaway slaves, pathologizing them for “wanting to be free.”

Don’t get me wrong: the medical model can be helpful, particularly for diseases like the flu, or COVID, where symptoms and causes are very clear, and only cause suffering.

It is much less helpful for autism, and for many disabilities in general, because impairment is not always a bad thing.

For instance, d/Deaf people have developed an amazing language and culture because of their hearing impairment. Erasing the symptom of the impairment (say, with cochlear implants) doesn’t necessarily help them experience the world in the most life-giving way. (For a great novel on this theme, I recommend True Biz).

The medical model is not the only way to look at disability. There’s also a social model, which notices that impairment is not necessarily disabling…so why do we act as though the two are the same?

For instance, I’m nearsighted, but in our society, it’s easy to accommodate my impairment with glasses. In her book, My Body Is Not a Prayer Request, writer Amy Kenny points out the sleek grace and speed of her motorized scooter. If she has access to ramps and wide hallways, she has no mobility problems. Yet people often treat her using a cane or a wheelchair as a problem to be solved.

What’s with the different attitudes about glasses and wheelchairs? It’s in our societal expectations, not anything inherently problematic about impairment. Centering expert’s or societal views on disability instead of disabled views is harmful.

We need to pay attention to the needs of disabled people (autism is a developmental disability), not the system that has arbitrary judgements about how we should categorize their experience—either as fine (glasses) or “disabled” (stimming, wheelchairs).

For most of the history of autism, we have tried to categorize its symptoms to help clinicians, psychiatrists, therapists, and caregivers treat autism like a disorder. To train autistic people to act more neurotypical.

But that approach has not helped actual autistic people. It ended up with autistics with high support needs in institutions, and less-obviously autistic people flying under the “medical model’s” radar, with no help or support.

So if someone tells me that previously invisible autistics like me mess up expert’s distribution curves and their tidy categories, not to mention the (very incorrect research) they learned in their training programs, I don’t just shrug. I kinda want to throw lighter fluid and a flaming match on the mess I made and say “Have fun!”

I love therapists, but I don’t freaking care if experts find it harder to categorize autistic people or separate them tidily from the general population.

I care if autistic people have the tools and language to thrive. And frankly, it’s high time helping people thrive became the only model we use when encountering any kind of disability, including autism.

Photo by Camylla Battani on Unsplash