The Second Reckoning

IMPORTANT: This blog is not a substitute for therapy, but provides evidenced-based education for the purposes of self-help, or to compliment the therapeutic process. ​ ​This blog is non-monetized.

Christina Crowe, our chief here at Dig a Little Deeper, refers to a 2–3-year period that she calls “the reckoning” – the process of coming to terms with who you are as a newly recognized ADHD’er, reflecting on your life from a different perspective, working through internalized ableism, secondary anxiety, depression, trauma, and so forth. It’s a process of  unpacking and repacking of one’s life, and a dramatic shift in beliefs about self, others, and the world. Less known is that for many ADHD’ers, an estimated 20-60% of us (Antshell & Russo, 2019), there is a second reckoning: late-identified autism.

Autism & ADHD Discernment 

Autism and ADHD are both highly heritable (70-80%) and may have a shared genetic profile; they both speak to struggles in social communication and perception, leaving folks with uneven reciprocation in friendships. Both involve difficulty with executive functioning, with Autistics better represented by cognitive inflexibility and ADHD’ers leaning into patterns of response inhibition. Current research suggests that the two conditions are similar enough to be considered “siblings”, but distinct enough that we wouldn’t call them “twins” (Antshell & Russo, 2019; I’m not so sure about that, myself, but I can’t say I’m not biased.)

Canadian adult ADHD prevalence estimates are around 3% and US estimates of autism in adults sitting around 2% (Dietz et al., 2020), we might guess the prevalence of the overlap between ADHD and “ASD” to be around 1-1.5% in North America. These numbers are very likely gross underestimations, however, due to the rates of missed diagnosis and misdiagnosis (Bailey, 2022; Espinet et al., 2022; Rivas-Vazquez et al., 2023; Schaeffer, 2023). In fact, before 2013, ADHD and autism would not be diagnosed together at all, leaving many clinicians today still inadequately informed about the combined presentation. Symptoms will also routinely be misunderstood due to lagging clinical measures that have not been updated to account for the overlap (Antshel & Russo, 2019). Relying on clinical judgment alone leaves our quality of life in the opinion of one clinician whom we’ve likely been waiting a LONG time or have paid thousands of dollars to see, and as many of us who have spent decades of our lives misdiagnosed and mismedicated know, often the knowledge for a fair assessment just isn’t there.

​My mid-reckoning self would bare fangs and breathe fire in the face of these circumstances, but I’ve recognized that we are outliers among outliers here, and doctors do the best they can with what they know. The real problem is that the DSM is a decade behind the research, and even current academic endeavors haven’t yet caught up to our lived experience. Today’s research, however, does point out that the more we know about autism and ADHD separately, the less we know about them together (Antshel & Russo, 2019).

Caution in Diagnosis

The outcome of being diagnosed with autism later in life is different than that of ADHD. While social ignorance might lead to eye-rolling in the aftermath of an ADHD diagnosis, social ignorance after an autism diagnosis is, at best, predictable exclusion, and at worst, physically and professionally hazardous. For example, up until 2017, diagnosed Autistics weren’t welcome to immigrate to Canada (Stattford, 2017). This remains true for many countries, including Australia (Frost, 2022), the United States (Lopez, 2019), New Zealand (Frost, 2022; McClure, 2022), and much of the UK (Pidd & Taylor, 2022; Stattford, 2017). Separately, in North America, anyone with an “ASD” diagnosis is routinely denied life insurance (Griffin, 2023), and Canadian and US military, for example, might ban you outright or make you jump through many hoops to join, if you get in at all (Agee & Wilson, 2022; Bouma, 2023).

The benefits of an adult autism diagnosis following ADHD diagnosis are debatable, since accessing benefits and accommodations through ADHD diagnosis may be adequate for school and workplace purposes. It’s different for children, however, whose schools may require more detail for IEP’s and whose parents may wish to access to funding and certain government programs. The real benefit of an adult “ASD” diagnosis may, ultimately, be validation and a greater sense of connection to the Autistic community – or, since the diagnostic criteria and assessment process is usually exceptionally non-affirming, it may have a worsening effect on ones self-worth. I’ve seen it go both ways.

A social model of mental health suggests that Autism should not be in the DSM any more than homosexuality (removed from its pages in 1973). As is, key symptoms related to emotional regulation are missing, Autistic meltdowns are missing entirely, and the language itself is riddled with condescension, reflecting a snapshot of our current social landscape more than any actual individual deficits (Nerenberg, 2020).

​The lived experiences and voices of Autistics remain absent from the standard diagnostic process. That said, the neurodivergent movement is gaining traction: Clinicians are beginning to question the models Autistics have criticized for decades (see Archer, 2023). More personally, not long ago I had a chat with one of the neurodivergent naturopathic doctors over at the ADHD & Spectrum Clinic regarding how they have integrated actual Autistic experience into their assessment process. It’s an informed melding of DSM background research and structure to better inform discernment alongside current research and lived experience. Likewise, Autistic therapist and ND, Natalie Engelbrecht, has adapted validated measures for use in diagnosis. This sort of reclamation gives me hope for the future of mental health. 

A Shift in Perspective

It was Mike Oliver who first described the social model of disability in 1983: the idea that afflicted individuals are not disabled by their brains or bodies, but by society (Price, 2021). Naturally, our social systems have been established to benefit those closest to the top of the bell curve. Within this paradigm, Autistics are disabled not inherently, but through systemic majority norms, exclusion, ignorance, subtle oppression, and the double empathy problem (see Zamzow, 2021).  

I’ve been reflecting on and deep-diving into this for a while now and from my perspective, Autistics and ADHD’ers have a certain overlapping culture about them. An Autistic or ADHD space is a deep breath of relief for folks, where they can have a break from the constant pressure of the neurotypical world and revel in their special interest or (I might say AKA) hyperfocus without the risk of criticism. Social anxiety, common to almost everyone I see in therapy, begins to melt away in these spaces as the narrative changes from a self-criticism (“everything about me is wrong”) to grief (“I’ve spent my whole life trying to meet neurotypical  expectations”). We need each other like we need air.

Neurotypical folks are usually uncomfortable with straight-forward conversation that goes against the grain of ‘you-first’ social mores – in other words, Autistic brains are to low-context culture as neurotypical brains are to high-context culture; confusion is bound to happen. However, neurotypical folks can learn a lot from us. Brené Brown, whom so many of us know and love, has insisted that “clear is kind; unclear is unkind”. Tell me why this is acceptable from her and her research, and tell me why Nedra Glover Tawwab can be heralded as a leading-edge clinician in supporting clients with healthy boundaries by being assertive and direct about one’s needs, while every Autistic who baulks at social ambiguity and speaks directly is told they are rude, blunt, or otherwise socially ‘deficient’. Who wouldn’t be awkward trying to gracefully navigate ambiguity with a logic-based operating system that is routinely refuted? This is the impact of judgment when charisma and confidence are unable to mask neurodivergence; this is stigma in action.

Any system created in an “about us without us” manner will always fail those they intend to support. Why? Because they are, at best, biased, assumptive, and nonrepresentative, and at worst, oppressive. A one-for-all approach will benefit the most privileged while the outliers (and outliers amongst outliers) – will continue to fall through the cracks. This is where we need advocacy from those with a greater degree of social power – i.e., informed clinicians working in the field. We need to change the narrative. We’re not fighting for the integration of “anecdotal evidence” as my old professors would say, but the collective evidence outside of a biased system that regulates “valid” research.

​To deny the value of lived experience is to gatekeep – to create barriers, to prevent people from accessing services. I am not okay with that.


“The fact that millions of people share the same vices does not make these vices virtues, the fact that they share so many errors does not make the errors to be truths, and the fact that millions of people share the same forms of mental pathology does not make these people sane.”

Erich Fromm, The Sane Society

There is value in research and some usefulness in the medical model as far as accessibility and treatment goes for many conditions, but we cannot assume that a book applied to everyone without everyone’s contribution will be free from harm. We need to be wary of assuming we already know what’s best for everyone, and we need to shift the deficit-based language and move away from -isms that so contribute to mental health stigma. We are working toward the acceptance of individual differences – not to say there is no struggle, but that struggle, as with asthma or diabetes, does not speak to character. We are working toward the acceptance of support needs and the accessibility of accommodations. We need skepticism within our broader social context to challenge the assumption that “normal” (that is, “average”) always means “healthy” or “correct”. This is not just health – this is the intersection of cultures, and we can all use a little more cultural humility as we sweep the landscape from our ivory towers.

I know I have ADHD. Am I Autistic? I’d say if you ask the right (Autistic) people, yes. I’d say, after about a year of this second reckoning, that yes, a tremendous number of things resonate. And, as Devon Price (2021) asserts, those who go through this deep dive are almost always correct by the end of it. I’ve sat with my internalized ableism for a long while and having now spent a great deal of time hyperfocused in trainings, immersed in research, and amidst the voices of lived experience, I have found solid ground. At this point I can say count on me to be a major disruptor because, like many of you, I’ve suffered from about us without us systems for over 30 years and am only just beginning to recognize myself and what I have to offer to our beautiful community. I see people every day who have suffered in this longer than I have, who have experienced such isolation and trauma in trying to navigate their differences among folks who didn’t/wouldn’t/couldn’t understand. They are healing from a lifetime of believing they were the problem – I was there once too. And we’re here now, and I’m flat out refusing any further steamrolling from insistent neurotypical hierarchies. There’s enough relevant research in the field today that we’re beyond “don’t know” – most clinicians and a growing number of employers understand what neurodivergence is. We are verging into “don’t care” territory, and I simply can’t have that. I will not have that.

We know there is trauma in rigidity, internally as an individual; there is also trauma in external rigidity from our systems. I will forever appeal to compassion and flexibility.  Allistic, neurotypical world: Choose inclusion. Choose equity. Ease your white-knuckled grip of power so cohesion can build. It’s easier to open the door from the inside. Admittedly, though, seeing our blind spots can be very difficult. Freud (2010) himself said he didn’t know what to do about “social neurosis” (unhealthy social practices), and perhaps that was because he was looking down from his own ivory tower. So, leading professionals, drop the weight of your accolades and come back to earth; you don’t need to be above anyone to matter. You know their worth is inherent, and yours is too. We don’t need to compete; we need to connect and open the gates. Let’s all meet on the ground.

References

Agee, K., & Wilson, A. (April, 2022). Disabled people fight US military disqualifications to fulfill their ‘duty to serve’. Stars and Stripes. https://www.stripes.com/theaters/us/2022-04-21/us-military-recruits-disqualifications-disabilities-autism-amputations-5752356.html

Antshel, K. M., & Russo, N. (2019). Autism spectrum disorders and ADHD: Overlapping phenomenology, diagnostic issues, and treatment considerations. Current Psychiatry Reports, 21(5), 34. https://doi.org/10.1007/s11920-019-1020-5

Archer, A. (September, 2023). The future of autism intervention: Not too medical, not too social, but just right. Therapist.com.  https://therapist.com/disorders/future-autism-intervention/utm_campaign=tcom_articles&utm_medium=email&_hsmi=252679735&_hsenc=p2ANqtz–DllhVSzhVsevLLcEUiULO6G8gRgJWPkt4sbduEKWWsg_76m-n_miJbFdASgXXi7R7Be5gYQF9qLfv9DDzj-Au8uFukne0ZpimPU3HSaaWzcCtVXw&utm_content=252625214&utm_source=hs_email

Bailey, E. (July, 2022). The most commonly misdiagnosed symptoms of autism in adults. ADDitude Magazine. https://www.additudemag.com/autism-spectrum-symptoms-adults/

Bouma, A. (January, 2023). Autistic people in military service. Different Brains. https://differentbrains.org/autistic-people-in-military-service/

Dietz, P. M., Rose, C. E., McArthur, D., & Maenner, M. (2020). National and state estimates of adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50, 4258-4266. https://doi.org/10.1007/s10803-020-04494-4

Freud, S. (2010). Civilization and its discontents (Reprint ed.). WW Norton. https://www.amazon.ca/Civilization-Its-Discontents-Sigmund-Freud/dp/0393304515/ref=sr_1_1?crid=2R380WMI80L23

Fromm, E. (2001). The sane society (2nd ed.). Routledge. https://www.amazon.ca/Sane-Society-Erich-Fromm/dp/0415270987/ref=sr_1_2?adgrpid=1358996604878026&hvadid=84937799039133&hvbmt=be&hvdev=c&hvlocphy=124388&hvnetw=o&hvqmt=e&hvtargid=kwd-84937457910306%3Aloc-32&hydadcr=22463_13387000

Frost, N. (October, 2022). For many disabled people, a battle to stay in Australia or New Zealand. The New York Times. https://www.nytimes.com/2022/10/30/world/asia/migrant-disability-australia-new-zealand.html
Griffin, C. (2023). Can people with autism get life insurance? Policy Advisor. https://www.policyadvisor.com/life-insurance/autism-and-life-insurance/

High-context and low-context cultures. (n.d.). Wikipedia. https://en.wikipedia.org/wiki/High-context_and_low-context_cultures
Huang, Y., Arnold, S. R. C., Foley, K-R, & Trollor, J. N. (2020). Diagnosis of autism in adulthood: A scoping review. Autism, 24(6), 1-17. https://en.wikipedia.org/wiki/High-context_and_low-context_cultures

Espinet, S. D., Graziosi, G., Toplak, M. E., Hesson, J., & Minhas, P. (2022). A review of Canadian diagnosed ADHD prevalence and incidence estimates published in the past decade. Brain Science, 12(8), 1051. https://doi.org/10.3390/brainsci12081051

Lopez, A. (February, 2019). With Mom’s green card on the line, family forgoes autism services for citizen child. KFF Health News. https://kffhealthnews.org/news/with-moms-green-card-on-the-line-family-forgoes-autism-services-for-citizen-child/

McClure, T. (April, 2022). New Zealand denies entry to autistic daughter of immigrant couple. The Guardian. https://www.theguardian.com/world/2022/apr/26/new-zealand-denies-entry-to-autistic-daughter-of-immigrant-couple
Monotropism (n.d.), Wikipedia. https://en.wikipedia.org/wiki/Monotropism

Nerenberg, J. (2020). Divergent mind. HarperAudio. https://www.amazon.ca/Divergent-Mind-Thriving-World-Designed/dp/B07TQ4RBRY/ref=sr_1_1adgrpid=1351300265384355&hvadid=84456791290206&hvbmt=be&hvdev=c&hvlocphy=124388&hvnetw=o&hvqmt=e&hvtargid=kwd-84456530677295%3Aloc-32&hydadcr=15010_13693983

Pidd, H., & Taylor, D. (May, 2022). ‘No humanity whatsoever’: pleas for UK to grant visa to autistic Ukrainian boy. The Guardian. https://www.theguardian.com/uk-news/2022/may/26/autistic-ukrainian-boy-timothy-tymoshenko-uk-grant-visa
Price, D. (2022). Unmasking autism: Discovering the new faces of neurodiversity. Random House Audio. https://www.amazon.ca/Unmasking-Autism-Discovering-Faces-Neurodiversity/dp/B09BBL5756/ref=sr_1_1?crid=188T8YI3OA4SL

Rivas-Vazquez, R.A., Diaz, S.G., Visser, M.M., Rivas-Vazquez, A. A. (2023). Adult ADHD: Underdiagnosis of a Treatable Condition. Journal of Health Service Psychology, 49, 11–19. https://doi.org/10.1007/s42843-023-00077-w

Schaeffer, L. S. (2023). The urgency pf addressing the underdiagnosis of autism in females. Journal of Psychiatry and Neurology, 1(1), 18-20. https://doi.org/10.37191/Mapsci-JPN-1(1)-002

Stattford, M. (January, 2017). Counties ban disabled people from immigrating. Blasting News. https://us.blastingnews.com/news/2017/01/countries-ban-disabled-people-from-immigrating-001433417.html
Zamzow, R. (July, 2021). Double empathy, explained. Spectrum News. https://www.spectrumnews.org/news/double-empathy-explained/

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Picture of Katie Richardson, H.BA, CYW, MA

Katie Richardson, H.BA, CYW, MA

Registered Psychotherapist  Katie works with individual youth (16+) and adults in Oshawa and across Ontario virtually. Katie has training, experience and special interests in ADHD, Autism, healthy interpersonal boundaries, LGBTQIA+ issues, emotional dysregulation, trauma, parenting neurodivergent children, life transitions, stress and burnout, and grief. ​​​

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