About this resource
This project seeks to improve Autistic and ADHD adults’ health. Autistic & ADHD adults commonly experience multiple chronic health conditions. These patients can encounter difficulty accessing needed care.
The constellation of medical problems affecting Autistic and ADHD adults is an emerging area of research. We have consolidated the currently available information into one place. We hope you will find this helpful.
With support from the Organization on Autism Research (OAR) and by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under the Autism Intervention Research Network on Physical Health (AIR‐P) grant, All Brains Belong’s task force of interdisciplinary clinicians, patients, and community members created this resource for busy primary care clinicians “in the trenches” to assist them in caring for their Autistic and ADHD patients. This guide was developed using the best available evidence based resources along with anecdotal lived experience recommendations that have been peer-reviewed by primary care physicians.
Our hope is that resources on this website can make things easier for patients and clinicians to communicate, identify, and work through these patterns together.
How to Use this Resource
This is an introductory primer for PCPs related to the constellation of medical conditions experienced by Autistic and ADHD adults that commonly co-occur. We present suggestions for key elements of history, suggestions for diagnostic workup, and suggestions for what works (and doesn’t work).
In particular, we call your attention to our column on “cautionary notes” (for example, use of muscle relaxants for chronic pain in this population, who commonly experience unrecognized connective tissue disorders and obstructive sleep apnea, can worsen airway collapse and therefore worsen any sleep-mediated disease process).
EXAMPLES OF WHEN A PCP MIGHT CONSIDER USING THIS CLINICIAN GUIDE:
- You have a patient with known or suspected Autism / ADHD – Review this Clinician Guide to screen for co-occurring conditions
- You have a patient with one of these conditions (i.e., POTS, chronic fatigue, Long COVID, fibromyalgia, IBS, chronic pain) – This resource can help screening, workup, and management of the related conditions that, if unaddressed, may interfere with clinical improvement (whether or not they are Autistic/ADHD)
- A patient may have found this website – Our patient education materials direct patients to seek medical advice from their clinicians. This Clinician Guide can help with next steps.
Reflecting on my patient panel, I realize I see patients with these patterns. I will use this resource frequently!”
Feedback from physician reviewers
“I had no idea there were all these connections in the literature. This is so useful for primary care clinicians.
WHY IS THIS IMPORTANT?
The average life expectancy for an Autistic adult is 36-54 years,1,2 with premature cardiovascular disease and suicide as leading causes.3 ADHD adults are 4 times more likely to die prematurely.4 69% of autistic adults have untreated health problems.5 Concerns may present as multi-system complaints or an overwhelming number of symptoms that can be frustrating and overwhelming to sift through both the patient and the clinician.
Of note, patients with these co-occurring conditions often have a history of healthcare trauma, and the perception of being dismissed and invalidated. Ensuring that patients feel heard and believed is essential. In our practice, it has been therapeutic even to simply identify this constellation as a unified narrative to explain patients’ long-term, complicated struggles. This also has the potential to decrease unnecessary testing, imaging, and referrals. Moreover, most of the strategies described in the Clinician Guide are inexpensive, safe, and effective.
Does this resource only apply to autistic / ADHD patients?
No. Not all patients who experience this grouping of medical conditions identify as autistic and/or ADHD. For example, the content of this resource may be applicable to patients suffering from Long COVID (who may or may not identify as autistic and/or ADHD).
However, it should also be noted that autistic and/or ADHD patients commonly go undiagnosed, particularly in patients assigned female at birth.6 Many patients acquire a list of diagnoses, including multiple psychiatric diagnoses, while their underlying neurological or immunological process goes unidentified. If you identify this clinical pattern in a patient who does not carry an autism and/or ADHD diagnosis, this also may be a missing piece of understanding the big picture of their health (and life). There are people with other diagnoses (or unknown diagnoses) who also fit this pattern and may benefit from some of these strategies.
While strategies for supporting autistic or ADHD patients and their co-occurring neurodivergencies (i.e., dyslexia, dyspraxia, dyscalculia) is beyond this project’s scope, All Brains Belong does offer educational consultations and training for healthcare practices and other organizations.
Click here to learn more.
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Acknowledgments
Special thanks to the Organization on Autism Research (OAR) and by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under the Autism Intervention Network for Physical Health (AIR-P) grant, for their generous support. Click here for full sponsorship information.
We would like to acknowledge the following primary care clinicians for reviewing and providing feedback on these resources: Yadira Acevedo MD, Laura Bujold DO, Tina D’Amato DO, Barbara Clure MD, Laura DePouli MD, Alan Douglass MD, Pranav Kapoor MD, McKalyn Leclerc MD, Terra Mangum DNP, Alisa Minkin MD, Stephanie Rosener MD, Miriam Seguri-Harrison MD, Barton Smith MD, Mariah Stump MD, Miriam Sturgis MD, Alex Tentler MD, and Abbie Tillman MD.
References
- 1. Guan J, Li G. Injury mortality in individuals with autism. American Journal of Public Health. 2017;107(5):791-793.
- Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. Premature mortality in autism spectrum disorder. British Journal of Psychiatry. 2016;208(3):232-8.
- South M, Costa AP, McMorris C. Death by suicide among people with autism: beyond zebrafish. 2021;4(1):e2034018.
- Søren Dalsgaard, Søren Dinesen Øtergaard, James F Leckman, Preben Bo Mortensen, Marianne Giørtz Pedersen. Mortality in children, adolescents, and adults with attention deficit hyperactivity disorder: a nationwide cohort study. The Lancet, 2015; DOI: 10.1016/S0140-6736(14)61684-6
- Doherty M, Nielson SD, O’Sullivan JD, Carravallah L, Johnson M, Cullen W, Gallagher L. Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study. medRxiv 2020.04.01.
- McCrossin R. Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis. Children (Basel). 2022 Feb 17;9(2):272.