Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults

Introduction

Image of a multicolored braid with a yellow strand, pink strand, black strand, blue strand, green strand, and red strand on a white background. The strands say nervous system, sleep, connective tissue, gastrointestinal, allergy/immunology, and cardiovascular. The text reads Everything is Connected to Everything. “If you pull the wrong string, you make the knot tighter. You have to find the right string to pull.” -All Brains Belong VT Patient.

Autistic & ADHD adults often have multiple intertwined health conditions.

The healthcare system often gets in the way of clinicians addressing multiple medical problems at a time. Yet by treating these intertwined medical conditions as separate, this may result in a person not getting better.

Thinking of these medical conditions as a group (or cluster / constellation) may result in more improvements.

We hope that the resources on this website can make things easier for patients and clinicians to work through these patterns together.

About the project

This project began because of All Brains Belong VT’s goal to improve health and well-being for neurodivergent adults. The project, website, and tools were built thanks to 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.
Click here for additional information about this sponsorship.

Founded by an Autistic doctor, All Brains Belong VT is a nonprofit in Montpelier VT. We are pioneering a novel model for neuroinclusive healthcare. This project was inspired by the patterns we see in our patients. The majority of our patients suffer from a constellation (grouping) of related medical conditions. We found that many of the common medical treatments for some parts of this grouping made others worse.

In May 2022, we formed a Task Force of clinicians, patients, and community members to discuss what works (and does not work) to manage these medical conditions or symptoms. We also gathered information from more than 100 autistic adults. These individuals gave feedback based on their personal experiences. The content we share on this website combines evidence-based medicine, lived experience, and our clinical experiences treating patients with these conditions.

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Why is this important?

The life expectancy for an autistic adult is 36-54 years.1,2 The main reasons for this are early heart disease and suicide.3 ADHD adults also have more medical problems and are 4 times more likely to die prematurely compared with non-ADHD adults.4 69% of autistic adults have untreated health problems.5

We believe that the results shared in this project will help autistic and ADHD adults to live longer, happier lives. 

To learn more, please select one of the following images:

Image of individuals sitting in a waiting room with white tiled floors and white walls. There is a black coat stand behind the black chairs and a white coffee table with a tan paper cup and a blue piece of paper on it. Five people are sitting on chairs, four adults and one child. There is a dark skinned health care professional who is standing and wearing a white coat and blue scrubs who is holding a chart on a clipboard with a pen. There are two light skinned individuals wearing blue shirts and jeans and one dark skinned individual wearing a green plaid shirt and jeans. There is a light skinned child wearing a white shirt and a yellow sweater and black pants. There is a light skinned individual wearing a black shirt and black pants.
RESOURCES FOR INDIVIDUALS & COMMUNITY MEMBERS
Resources for Medical Professionals
RESOURCES FOR MEDICAL PROFESSIONALS
NOTE: The information on this website is for education only.

This is not medical advice. This is not meant to diagnose or treat individuals’ medical problems. All Brains Belong cannot provide medical advice to people who are not our patients. We recommend that all patients discuss their health with their personal healthcare providers.

Acknowledgments

Special thanks to the Organization on Autism Research (OAR) and 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 for supporting parts of this project. We are also deeply grateful for the generous contributions of our community members who have supported this project with their time, skills, and philanthropy.

We would like to acknowledge the following primary care clinicians for reviewing and providing feedback on these resources: Yadira Acevedo MD, Laura Bujold DO, Barbara Clure MD, Tina D’Amato DO, 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.

Additional thanks to members of our interdisciplinary “All the Things” Task Force and/or reviewer team: Lauren Arcuri, Max Barrows, Jenny Blair MD, Hannah Bloom MOTR/L, David Brasure, Emily Brodsky, Gray Costin, Christina Donnelly RN, Jaq Feder PsyD, AC Goldberg Ph.D. CCC-SLP, Cherish Graff MS LPC, Nita Hanson, Charlie Hohn, Sarah Knutson, Amy Laurent Ph.D. OTR/L, Matthew Lefluer, Laura Lewis Ph.D., Sandra Molteni MD, Rebecca Olson, Steve Owens, Amy Noyes, Matthew Pieratt, Stirling Peebles, Joy Redington, Tracy Roux, Liliane Savard DPT, Michael Shor LCSW, Sarah Cohen Solomon MD, Holly Spence PT, Janelle Starr, Ari Sturgis, Cynthia Swartz MD, Megan Thomas, Karen Topper, Becky Walsh CFP, Iris Warchall PT DPT, Rhy Wepaloki, and Hannah Zajac PT, DPT, NCS, CBIS, Gabriela Zimbron, and Zeph.

We also deeply appreciate the efforts of the more than 100 members of the All Brains Belong community who participated in this project.

References

  1. 1. Guan J, Li G. Injury mortality in individuals with autism. American Journal of Public Health. 2017;107(5):791-793. 
  2. 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.
  3. South M, Costa AP, McMorris C. Death by suicide among people with autism: beyond zebrafish. 2021;4(1):e2034018.
  4. 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
  5. 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.