Before I began writing Is It You, Me, or Adult A.D.D.?, I’d spent several years being a member and then a moderator of support groups for the partners of adults with ADHD. This all started around 1999.
We were all feeling our way back then; very little information existed on adult ADHD itself, much less its far-ranging impact on domestic issues. That means I’d heard plenty about the “hot spots” created by unrecognized ADHD symptoms—issues with money, household chores, clutter, sex, co-parenting, and video-game obsessions. But few experts were actually talking about these issues. In fact, adult ADHD was just beginning to be recognized. The particular issues of relationships, or the idea that the “partners of” might need help? Mostly not on anyone’s radar screen.
I wondered, though; perhaps the more vocal group members weren’t truly representative of the majority. Moreover, might there even be topics that few knew to connect with ADHD—perhaps a mate’s restless-leg syndrome or daredevil driving habits?
I was diving into the peer-reviewed research, on every tangential topic to ADHD, “connecting the dots” in areas such as sleep apnea and dopamine transmision. The more I read, the more I was astounded by the broad-reaching implications of the underlying neurobiology. There was far more than “focus” at stake; ADHD could pose real health risks for some people who have it.
Also: what about other subjects that members might feel too timid to broach, including sexual challenges or even interpersonal violence? And for those whose ADHD partners had tried medication, what factors seemed to contribute to its success or failure?
I set to work developing and conducting a survey to answer those questions and more. I had theories on a variety of topics, and wanted to see if those theories could be substantiated.With data, I could make a stronger case to the professional community and the public alike for taking this subject seriously.
Fortunately, the results of the survey have born the test of time: Subsequent research in the published literature have echoed my findings in several areas. (I touch upon some of these in my new book, co-edited with Arthur Robin, PhD: Adult ADHD-Focused Couple Therapy: Clinical Interventions. And some of the results are published in Dr. Russell Barkley’s leading clinical guide for ADHD, Attention Deficit Hyperactivity Disorder: A Handbook for Diagnosis and Treatment, edited by Russell Barkley, PhD. Dr. Barkley asked me to contribute the first-ever chapter on couple therapy to that guide.
To date, the ADHD Partner Survey is the largest, most comprehensive survey on this subject. Although not scientific, its methods were rigorous. The survey was not randomly constructed and posted on a website for anyone to take, willy nilly. I interviewed each potential respondent and knew their stories.
My journalism study at the University of Tennessee, Knoxville provided excellent instruction in the parsing of surveys and studies, and I made good use of it. (My husband says I earned two PhDs on this project.) In comparison to the hundreds of social psychology studies I’ve read, the ADHD Partner Survey’s construction and administration were very rigorous. Moreover, its findings mirror those of existing ADHD studies, including those focusing on partnership—and go far beyond them.
Moreover, most scientific studies involve people with ADHD who either are already diagnosed or are pursuing treatment (so-called “clinic-referred” patients). The ADHD Partner Survey covers that population, but it also offers a rarer, more intimate glimpse into lives wherein ADHD has gone unrecognized and untreated for decades—and firmly remains that way.
We cannot know for sure that those partners who remain unevaluated actually have ADHD. The chances seem strong, however, given the respondents’ selections from a list of ADHD diagnostic traits. In fact, of the 118 respondents whose partners had sought an evaluation during the relationship, 116 were indeed diagnosed with ADHD. (Several more might have been diagnosed if the person had not abruptly walked out of the appointment or if the professional had better expertise in evaluating for ADHD.) The evaluation seemed thorough in most cases, as another survey question shows:
Select ALL that took place for your partner’s AD/HD evaluation as an adult with a mental health care professional or family physician
The professional had a specialty in or had trained in evaluating for AD/HD.
The professional gathered information from multiple sources (tests, interviews, etc.).
The professional used AD/HD symptom checklists.
The professional used standardized behavior rating scales (where behaviors are listed and the person is asked to rate on a scale of, say, 1 to 5)
The professional asked for a detailed history of partner’s past and current functioning.
The professional obtained information from family members or you (people who know your partner well).
The professional also evaluated for the possible presence of co-existing conditions (anxiety, depression, etc.).
Brief office visit only; no tests or input from family members or significant others.
Don’t know what took place.
The survey data presented in Is It You, Me, or Adult A.D.D.? is limited to a select group: the 111 respondents whose partners have been officially diagnosed with ADHD. Moreover, these respondents knew their ADHD partners before medication treatment (79 percent of the 111) or their ADHD partners have never taken medication (21 percent).
Why select this sub-group? Because my book addresses the challenges created by untreated ADHD (typically on the moderate-to-severe side of the spectrum) and explains treatment strategies. This group could therefore provide a clearer picture of life before and after treatment. (Unless a survey question specifically asked about the effect of medication on behavior, respondents based their answers on their ADHD partners’ behavior before medication.)
At some point, The ADHD Partner Survey blog will consider other subsets of the data as well. For now, we’ll study responses from the 111 respondents with ADHD partners who have been diagnosed and who were known to the respondent before taking medication .
We do not know how data from support-group members (the majority of survey respondents) compares to a control group—that is, people who are not in a support group, not having trouble in their relationship, or not involved with an adult who has ADHD. That might happen in the future, but it will be tricky to identify couples in troubled relationships that aren’t, in fact, affected by ADHD. It is too widely missed and misunderstood, even by nationally recognized relationship experts.
For now, the data is simply meant to help readers piece together the puzzle of recognizing how ADHD might be affecting their lives.
In October and November of 2004, 148 respondents completed the password-protected, 175-question online survey. Another 14 completed the survey in spring 2005, for a total of 162 respondents.
Each had many opportunities to include textual responses that clarified or expanded on their selections. Anonymity was assured. The sheer number of respondents is remarkable, as is the completion rate: only a handful dropped out, typically because of technical problems with their computers or Internet access. Clearly, these respondents were highly motivated to help educate others.
This was not a random survey posted on the Internet. For the data to have any meaning, the respondents had to be qualified. Participants were limited to individuals whose stories I had followed long enough in the support group to be confident of their legitimacy. The 111 respondents whose answers are reported in this book show the following demographics (for full demographic data, click here):
- 86 percent had male partners and 14 percent had female partners.
- Most reported being in heterosexual relationships, with 6 percent being in same-sex relationships.
- Ages ranged from 22 to 75 (with the majority from 36 to 53).
- Most respondents lived in the United States, but 14 percent resided in the United Kingdom, Canada, Australia, New Zealand, or Israel.
- 50 percent were college graduates and 28 percent held postgraduate degrees. (By contrast, only 26 percent of their ADHD partners were college grads, but 29 percent held postgraduate degrees.)
- Of the 71 percent who disclosed annual household income, 50 percent reported earning $91,000 and above, and 20 percent reported earning $50,000 or below.
See the posts here: Survey Results