The Marks of the Bear: The Quiet Cost of Missed Autism and ADHD

July 30, 2025

The Marks of the Bear

Mental Health, Misdiagnosis, and the Quiet Cost of Being Missed

Lately, I’ve been asked — sometimes pointedly — why I do what I do. Why I started Neurodivergent Insights.

And to be honest, I’ve been asking myself that question too — why keep going through website crashes and backlash waves? Why keep showing up when disappearing into a hole sounds pretty tempting? And here’s where I’ve landed:

I do this work because I believe it saves lives.

I know that might sound dramatic — maybe even a bit grandiose. It makes me a little uncomfortable to name it so directly.

But when I boil it all down, this is the driving force behind the work I do.

I’m pulling these thoughts together today partly because it’s Mental Health Awareness Month… and partly because we’re in another backlash wave — this time centered on the rise of self-identification and adult diagnoses. You’ve perhaps come across some version of this headline: Are all these people really Autistic?And I wanted to offer a cohesive response to why this work matters.

🚩 This essay is a bit heavier than usual. It includes reflections on suicide, addiction, and mental health struggles.

If that’s not what you need right now, please take care — and feel free to step away. If that feels like too much to take in, consider this your gentle off-ramp moment.

Mental Health, Autism & ADHD: Why Identification Matters

This feels especially relevant right now, as critiques of the neurodiversity movement resurface. Some are reactionary — rooted in fear or misrepresentation.

But others carry threads worth wrestling with: concerns about overshadowing high support needs, or about reducing neurodivergence to a trend — where words like autism and ADHD risk losing their protective meaning. I worry about these things too.

At some point, I’d like to explore these critiques more fully — to push back where they rely on strawman arguments, and also to name the uncomfortable truths they sometimes hold. Truths that invite those of us in the movement to wrestle, reflect, and refine.

But not today. Today, I want to speak to something that often gets missed in the conversation:

The mental health cost of being a low support needs, high-masking, or late-identified Autistic or ADHD adult.

Those of us who fly under the radar. Who appear “fine” to others. But quietly suffer behind closed doors.

The Invisible Terrain

For many of us, the version of Autism or ADHD we live doesn’t come with visible support needs.

But behind closed doors, the internal experience can be dark. Disorienting. Overwhelmingly lonely — often shaped by competing internal demands.

We suffer. Our families suffer. And over time, generational cycles of trauma, burnout, and addiction can take root.

This is the part that often gets overlooked — in media portrayals, in systems of care, and in some of the critiques aimed at late-diagnosed adults and the rise in neurodivergent self-identification.

Because here’s the thing: Autistic and ADHD adults with fewer traditional support needs often carry very high mental health needs.¹

The Data Behind It

This isn’t just anecdotal. The numbers paint a sobering picture — one that too often gets overlooked in mainstream conversations about autism and ADHD.

While prevalence rates need to be interpreted with caution, here are a few studies that paint a dim picture.

About 70–80% of Autistic and ADHD folx will experience at least one co-occurring mental health condition.²

Anxiety. Depression. PTSD. OCD. Bipolar. Eating disorders are common experiences.

Suicidality is also significantly elevated among Autistic people. A large Swedish study found that Autistic adults without intellectual disability were more than seven times more likely to die by suicide compared to non-autistic peers.³

Another UK study found that 41% of people who died by suicide likely met criteria for autism — many had never been diagnosed.⁴

And in a recent meta-analysis, over a third of Autistic and possibly Autistic people without intellectual disability reported suicidal thoughts. Nearly a quarter had made a suicide attempt.⁵

Many Autistic people carry deep and chronic mental health distress without ever being recognized as Autistic.

And without that recognition, it’s easy to internalize the wrong story about why life feels so hard.

The pattern holds for ADHD as well. People with ADHD are significantly more likely to experience mental health challenges like anxiety, depression, and bipolar conditions. And when it comes to suicidality, the numbers are also sobering. A recent meta-analysis found that people with ADHD were more than three times as likely to experience suicidal thoughts, over twice as likely to attempt suicide — and nearly seven times more likely to die by suicide than those without ADHD.⁶

Rates of self-harm, substance use, and emotional dysregulation are also consistently elevated — especially when ADHD goes undiagnosed, unsupported, or misunderstood.

Yeah… I know.
It’s a lot.
It’s heavy.
And it’s also why I do this work.

This isn’t to say that those with higher support needs, or earlier access to diagnosis, don’t also struggle with mental health. Many do. This isn’t an “us vs. them” narrative. It’s a both/and.

Across the spectrum, we tend to struggle — sometimes quietly, sometimes in ways that are misunderstood.

And when you’re masking, performing neurotypicality, and don’t understand why everything feels so hard … it can add a layer of confusion and isolation to the experience.

Misdiagnosis, Misunderstanding, and Missed Roots

When the neurodivergent foundation is missed, we often treat symptoms without ever touching the root.

The person may languish in treatment for years — perhaps it’s labeled as “treatment-resistant depression.”

We stay stuck in therapy for years — both client and clinician wondering why nothing’s changing.

Or we get distrustful of the system and give up on seeking help.

When identification is not understood.
We mistake sensory overload for generalized anxiety. Routine disruption for anger issues. Executive functioning struggles for laziness or burnout.

We collect the fallen leaves, but never get underneath the soil to the roots.

Substance Use & Eating Disorders

Many Autistic or ADHD adults — especially those undiagnosed — turn to substances to soothe what they don’t yet have language for:

Social lubricant.
A way to unwind.
To numb out the too-muchness of the day.
To self-soothe or temporarily regulate a nervous system that’s running on fumes.
To slow down the rumination loops, shame spirals and overthinking mind.

One study found 20% of people seeking support for substance use likely met criteria for autism.⁷

When the root causes driving the substance use is not understood … it’s difficult to get traction in treatment.

Another study found nearly 27.5% of females in eating disorder treatment may be Autistic — most undiagnosed.⁸

For many, food rigidity isn’t about body image. It’s about control. Sensory sensitivities. A need for predictability in a chaotic world. Again … when the route cause is not understood … it’s difficult to get traction in treatment.

Psychiatric Settings Miss Us, Too

Even in mental health systems, we’re hidden in plain sight.
A Swedish study found nearly 1 in 5 adults in outpatient psychiatric care met criteria for autism.
But only 6% had a diagnosis on record.⁹

These gaps matter. They cost people years of understanding, care, and often, safety.

That means people are showing up in therapy and psychiatric care with Autistic and ADHD brains … but that part of them often goes unseen.

So they’re treated for the surface symptoms: anxiety, shutdown, “treatment-resistant” depression. And they often get stuck, wondering why nothing is working.

Why Diagnosis Can Be Life-Saving

When I discovered I was Autistic, a thousand mysteries clicked into place.
That gnawing sense of wrongness I’d carried for decades finally began to shift.

Not because anything around me changed. But because I changed. Or rather — I finally understood myself.

I had a lens. A name. A frame. And from there, change started happening. It began small, then rippled outward.
I started building in environmental accommodations, taking my sensory needs seriously, and aligning my world with my actual capacity. And then came community. Language. The kind of connection I never thought I’d have.

And while that discovery didn’t “cure” my mental health struggles (I still live with anxiety, OCD, depression, and more), I have more capacity to hold them now. I have a sturdier base. And I don’t walk on the edge of life and death the way I used to.

The Bear with No Name

I will leave you with one final story. It comes from the years of therapy leading up to diagnosis. I was working with a psychoanalytic therapist, trying to understand why I felt so unwell in a life that, on paper, looked so good.

At one point I was exploring, “Was there something I’ve repressed? Trauma I can’t remember?”

I was doing the work of coming to grieve the fact I would never fully understand why my existence, body, life felt so fragmented and painful as it did.

And in a quiet, simple moment, he reflected: “You have the marks of the bear, but no bear.”

I teared up immediately (not common for me). Because yes — that named it precisely. I was walking through life carrying the aftermath of something I couldn’t name:

My nervous system was on fire.
My relationships felt jagged.
I couldn’t get into my life in the way I wanted.
I was exhausted from trying to hold it all together.

And then … six months later I learned I was Autistic. And the marks made sense.

So yes, I do this work because I believe it saves lives. Because it saved mine.

And because I know there are still so many people walking around with the marks of the bear — but no bear to point to. They deserve to know the truth of who they are. They deserve reflection. Language. Community.

This article was originally shared on the Neurodivergent Notes Substack on May 18, 2025.

Further Learning 📖

The Neurodivergent Insights team has recently created a full length “Help Me Stay” Workbook. If you struggle with suicidality, you are not alone in this experience, and we’ve created this resource (a neurodivergent adapted safety plan) as a free gift to the community. You will find that resource along with crises lines here.

If you’d like to explore these ideas more deeply, you can start with Module One of The Lost Generation, which is freely available as part of the Autism Awareness Series.

Or for a more comprehensive dive, the full Lost Generation Training walks through these topics in much greater detail — including the data, clinical complexity and systemic patterns behind why so many adults go missed.

References 📖

1) As noted in the study on premature mortality: “High-functioning ASD often presents with co-existing psychiatric disorders.” See Hirvikoski et al. for more on differing causes of mortality between Autistic individuals with lower vs. higher support needs.

Note: This study uses the term “Asperger’s” to refer to individuals without co-occurring intellectual disability — but that’s not the same as being high-masking. The relationship between masking, support needs, and diagnostic categories is complex and doesn’t map neatly onto older clinical labels. Importantly, we can’t assume that “high masking” always equates to greater mental health distress than those who don’t mask. Many Autistic people with lower support needs are unable to mask — and they make up a significant portion of this study’s sample. It’s important to be mindful of statistical appropriation here: this study is about support needs (Level 1, 2, or 3), not masking.

2) Regarding ADHD see: Katzman, M. A., Bilkey, T. S., Chokka, P. R., Fallu, A., & Klassen, L. J. (2017). Adult ADHD and comorbid disorders: clinical implications of a dimensional approach. BMC psychiatry, 17(1), 302. https://doi.org/10.1186/s12888-017-1463-3

Regarding autism and mental health co-occurrence rates see: Hossain, M. M., Khan, N., Sultana, A., Ma, P., McKyer, E. L. J., Ahmed, H. U., & Purohit, N. (2020). Prevalence of comorbid psychiatric disorders among people with autism spectrum disorder: An umbrella review of systematic reviews and meta-analyses. Psychiatry Research, 287, 112922. https://doi.org/10.1016/j.psychres.2020.112922

3) Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. Premature mortality in autism spectrum disorder. Br J Psychiatry. 2016;208(3):232–8.

4) Cassidy S, Au-Yeung S, Robertson A, et al. Autism and autistic traits in those who died by suicide in England. The British Journal of Psychiatry. 2022;221(5):683-691. doi:10.1192/bjp.2022.21

5) Newell, V., Phillips, L., Jones, C. et al. A systematic review and meta-analysis of suicidality in autistic and possibly autistic people without co-occurring intellectual disability. Molecular Autism 14, 12 (2023). https://doi.org/10.1186/s13229-023-00544-7

6) Septier, M., Stordeur, C., Zhang, J., Delorme, R., & Cortese, S. (2019). Association between suicidal spectrum behaviors and Attention-Deficit/Hyperactivity Disorder: A systematic review and meta-analysis. Neuroscience and Biobehavioral Reviews, 103, 109–118. https://doi.org/10.1016/j.neubiorev.2019.05.022

7) McKowen, J., Woodward, D., Yule, A. M., DiSalvo, M., Rao, V., Greenbaum, J., Joshi, G., & Wilens, T. E. (2022). Characterizing autistic traits in treatment-seeking young adults with substance use disorders. The American journal on addictions, 31(2), 108–114. https://doi.org/10.1111/ajad.13247

8) Parsons M. A. (2023). Autism diagnosis in females by eating disorder professionals. Journal of eating disorders, 11(1), 73. https://doi.org/10.1186/s40337-023-00785-0

9) Nyrenius, J., Eberhard, J., Ghaziuddin, M., Gillberg, C., & Billstedt, E. (2023). The ‘lost generation’ in adult psychiatry: psychiatric, neurodevelopmental and sociodemographic characteristics of psychiatric patients with autism unrecognised in childhood. BJPsych open, 9(3), e89. https://doi.org/10.1192/bjo.2023.13

Dr. Megan Anna Neff

Dr. Megan Anna Neff is an AuDHD clinical psychologist. Author of Self-Care for Autistic People and The Autistic Burnout Workbook, and the forthcoming AuDHD Unlocked (Spring 2027). Founder of Neurodivergent Insights. Grounded in the blend of clinical insight, research, and lived AuDHD experience, NDI translates complex neurodivergent experiences into accessible, compassionate, and affirming resources for adults, clinicians and helping professionals worldwide.