Improve Gender-Equity in the Diagnosis of Adult ADHD: Petition to APSARD
Improve Gender-Equity in the Diagnosis of Adult ADHD: Petition to APSARD
The Issue
We applaud the American Professional Society of ADHD and Related Disorders (APSARD) initiative to develop guidelines for the diagnosis and treatment of adult ADHD and urge APSARD to seize the opportunity to simultaneously address the long and widely recognized underdiagnosis of females. Let us not miss this opportunity to advance the important work of recognizing gender differences as adult ADHD guidelines are developed.
Since a 1994 NIMH Conference on Sex Differences in ADHD, the need for more gender-sensitive diagnostic criteria and for research on gender differences has been repeatedly highlighted in the clinical literature (1). Despite this, when the recent World Federation of ADHD consensus statement set forth 208 evidence-based conclusions about ADHD, none adequately addressed the presence of gender differences in the presentation of ADHD or in the subsequent diagnosis of ADHD (2). Females with ADHD remain at risk of late diagnosis, missed diagnosis, and misdiagnosis with significant negative mental health, general medical, and economic outcomes (2-8), yet many in the ADHD research community believe that their hands are tied due to lack of evidence to support broadly recognized gender differences.
To quote Carl Sagan, “Absence of evidence is not evidence of absence.” We urge the APSARD Guidelines Committee to escape the circular trap we’ve been caught in for so long. We call on APSARD to initiate, promote, and prioritize the gathering of needed evidence on gender differences. Such an effort is consistent with APSARD’s core mission of supporting the needs of all that are affected by ADHD.
Let APSARD begin, just as we did in the development of the original diagnostic criteria, by seeking a consensus statement on more gender-equitable criteria. Once this consensus has been reached, we have a clear path to gathering evidence to test the consensus-based gender-sensitive recommendations.
It is incumbent upon today’s generation of ADHD experts to advance the long-overdue process of documenting gender differences in ADHD. We call on APSARD to develop more gender-sensitive diagnostic criteria by consensus—through a process parallel to the initial development of the existing male-focused criteria—and then promote the research necessary for these criteria to become "evidence-based."
Authors:
Kathleen Nadeau, Ph.D.
Michael Morse, M.D. M.P.A.
Co-authors and Contributors:
Stephen P. Hinshaw, Ph.D.
Patricia Quinn, M.D.
Andrea Chronis-Tuscano, Ph.D.
Citations:
1) Arnold, L. Eugene. "Sex differences in ADHD: Conference summary." Journal of abnormal child psychology 24 (1996): 555-569.
2) Faraone, Stephen V., et al. "The world federation of ADHD international consensus statement: 208 evidence-based conclusions about the disorder." Neuroscience & Biobehavioral Reviews 128 (2021): 789-818.
3) Nadeau, Kathleen G., and Patricia O. Quinn. Understanding women with AD/HD. Advantage Books, 2002.
4) Quinn, Patricia O., and Manisha Madhoo. "A review of attention-deficit/hyperactivity disorder in women and girls: uncovering this hidden diagnosis." The primary care companion for CNS disorders 16.3 (2014): 27250.
5) Lai, Meng-Chuan, Hsiang-Yuan Lin, and Stephanie H. Ameis. "Towards equitable diagnoses for autism and attention-deficit/hyperactivity disorder across sexes and genders." Current Opinion in Psychiatry 35.2 (2022): 90-100.
6) Young, Susan, et al. "Females with ADHD: An expert consensus statement taking a lifespan approach providing guidance for the identification and treatment of attention-deficit/hyperactivity disorder in girls and women." BMC psychiatry 20.1 (2020): 1-27.
7) Hinshaw, Stephen P., et al. "Annual Research Review: Attention‐deficit/hyperactivity disorder in girls and women: underrepresentation, longitudinal processes, and key directions." Journal of Child Psychology and Psychiatry 63.4 (2022): 484-496.
8) Kooij, J. J. S., et al. "Updated European Consensus Statement on diagnosis and treatment of adult ADHD." European psychiatry 56.1 (2019): 14-34.
___________________________________________________
Note: We are aware of the limitations and interconnections of the terms “gender” and “sex” and that these terms do not reference binary phenomena. For simplicity, we use the term “gender” to refer to the combined broader construct that could also be named “sex/gender”.
2,028
The Issue
We applaud the American Professional Society of ADHD and Related Disorders (APSARD) initiative to develop guidelines for the diagnosis and treatment of adult ADHD and urge APSARD to seize the opportunity to simultaneously address the long and widely recognized underdiagnosis of females. Let us not miss this opportunity to advance the important work of recognizing gender differences as adult ADHD guidelines are developed.
Since a 1994 NIMH Conference on Sex Differences in ADHD, the need for more gender-sensitive diagnostic criteria and for research on gender differences has been repeatedly highlighted in the clinical literature (1). Despite this, when the recent World Federation of ADHD consensus statement set forth 208 evidence-based conclusions about ADHD, none adequately addressed the presence of gender differences in the presentation of ADHD or in the subsequent diagnosis of ADHD (2). Females with ADHD remain at risk of late diagnosis, missed diagnosis, and misdiagnosis with significant negative mental health, general medical, and economic outcomes (2-8), yet many in the ADHD research community believe that their hands are tied due to lack of evidence to support broadly recognized gender differences.
To quote Carl Sagan, “Absence of evidence is not evidence of absence.” We urge the APSARD Guidelines Committee to escape the circular trap we’ve been caught in for so long. We call on APSARD to initiate, promote, and prioritize the gathering of needed evidence on gender differences. Such an effort is consistent with APSARD’s core mission of supporting the needs of all that are affected by ADHD.
Let APSARD begin, just as we did in the development of the original diagnostic criteria, by seeking a consensus statement on more gender-equitable criteria. Once this consensus has been reached, we have a clear path to gathering evidence to test the consensus-based gender-sensitive recommendations.
It is incumbent upon today’s generation of ADHD experts to advance the long-overdue process of documenting gender differences in ADHD. We call on APSARD to develop more gender-sensitive diagnostic criteria by consensus—through a process parallel to the initial development of the existing male-focused criteria—and then promote the research necessary for these criteria to become "evidence-based."
Authors:
Kathleen Nadeau, Ph.D.
Michael Morse, M.D. M.P.A.
Co-authors and Contributors:
Stephen P. Hinshaw, Ph.D.
Patricia Quinn, M.D.
Andrea Chronis-Tuscano, Ph.D.
Citations:
1) Arnold, L. Eugene. "Sex differences in ADHD: Conference summary." Journal of abnormal child psychology 24 (1996): 555-569.
2) Faraone, Stephen V., et al. "The world federation of ADHD international consensus statement: 208 evidence-based conclusions about the disorder." Neuroscience & Biobehavioral Reviews 128 (2021): 789-818.
3) Nadeau, Kathleen G., and Patricia O. Quinn. Understanding women with AD/HD. Advantage Books, 2002.
4) Quinn, Patricia O., and Manisha Madhoo. "A review of attention-deficit/hyperactivity disorder in women and girls: uncovering this hidden diagnosis." The primary care companion for CNS disorders 16.3 (2014): 27250.
5) Lai, Meng-Chuan, Hsiang-Yuan Lin, and Stephanie H. Ameis. "Towards equitable diagnoses for autism and attention-deficit/hyperactivity disorder across sexes and genders." Current Opinion in Psychiatry 35.2 (2022): 90-100.
6) Young, Susan, et al. "Females with ADHD: An expert consensus statement taking a lifespan approach providing guidance for the identification and treatment of attention-deficit/hyperactivity disorder in girls and women." BMC psychiatry 20.1 (2020): 1-27.
7) Hinshaw, Stephen P., et al. "Annual Research Review: Attention‐deficit/hyperactivity disorder in girls and women: underrepresentation, longitudinal processes, and key directions." Journal of Child Psychology and Psychiatry 63.4 (2022): 484-496.
8) Kooij, J. J. S., et al. "Updated European Consensus Statement on diagnosis and treatment of adult ADHD." European psychiatry 56.1 (2019): 14-34.
___________________________________________________
Note: We are aware of the limitations and interconnections of the terms “gender” and “sex” and that these terms do not reference binary phenomena. For simplicity, we use the term “gender” to refer to the combined broader construct that could also be named “sex/gender”.
2,028
The Decision Makers
- American Professional Society of ADHD and Related Disorders
No response
The Supporters
Featured Comments
After 30+ years of feeling like I was nothing more than a bundle of personality defects and maladaptive coping mechanisms, I was diagnosed with ADHD. The signs were there since childhood but, since no one knew what to look for, I endured multiple mental health breakdowns (which resulted inevitably in loss of employment and relationships, housing instability, and substance misuse) and abusive relationships before I was actually diagnosed. Finally, at 40 years old, I feel like I have a handle on my life. Establishing equitable diagnostic criteria will help women (and AFAB folks) thrive from an early age, instead of spending half their life needlessly struggling and suffering.
I wasn't diagnosed until I was 28 years old and I feel like this was due to the lack of education on how ADHD presents differently in women. There are too many misdiagnoses for women and incorrect prescriptions written for them as well due to this lack of education. I have worked as a therapist for about a year and a half, and I have seen the prevalence of this issue in just this short amount of time.
I spent the first 34 years of my life being criticized for being irresponsible, lazy, unmotivated, unreliable, incapable, you name it. Being told I'm not even trying, when in reality, I was killing myself trying... to better, to be a real adult worthy of accomplishment and happiness. Because of my extremely late diagnosis, I had spent my entire life up to that point, hating myself and thinking I was worthless and useless. I just couldn't do anything right, no matter how hard I tried. And I really was trying. I tried so hard to be "normal", that it almost killed me. My late diagnosis caused me years of depression, anxiety, a stay in an institution for cutting myself, followed by years of self-medicating which eventually turned into a full blown addiction. The sad part is, this all could've been prevented. If only my doctors, teachers, etc. had taken the time to look deeper and ask questions, my life could have been completely different. I wouldn't have spent my life suffering in silence thinking I just must not be good enough. As a society we put so much pressure on girls and women to be perfect, which makes it even harder for us to reach out and ask for help. It makes it impossible for us to admit that we are truely suffering and drowning. This needs to stop! Things need to change!
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Petition created on March 4, 2024