What is The ADHD Partner Survey? And, why did I spend many grueling months designing it and collecting responses? The short answer to both: Because someone had to.
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.
- A local group for adults with ADHD
- A local and an online group for the partners of adults with ADHD
1999: We Were Forging New Ground
In the “partners of” group, we were all feeling our way. Very little information existed on adult ADHD itself, much less its far-ranging impact on domestic issues. Adult ADHD had become a diagnosis only a few years ago, in 1994. The particular issues of relationships, or the idea that the “partners of” might need help? Mostly not on anyone’s radar screen.
In fact, one well-known psychiatrist made the media rounds portraying ADHD as a gift. That’s not all. More than once, he said, “The biggest problem people with ADHD have is marrying people and working for bosses who are sadistic and controlling.” (Indeed, I would learn over many years that he repeats it with every presentation.) This certainly did not jibe with the stories of struggles I was hearing from the partners with ADHD—and the adults with ADHD themselves. I was confused—and alarmed.
In both groups, I’d heard plenty about the “hot spots” created by unrecognized or poorly managed ADHD—issues with money, employment, household chores, clutter, sex, co-parenting, and video-game obsessions. How were these different from standard “couples troubles”? Unclear.
2000-2001: Were There Consensus Issues?
I took a cautious approach. By their nature, support groups draw people who are struggling. Moreover, the more vocal group members might not represent the majority.
I wondered: Could there be subjects that members felt too timid to broach, including sexual challenges or even interpersonal violence? Certainly, the partners largely were more clear-eyed about their ADHD partners’ life challenges than their ADHD partners were. (This was before I researched the nature of “denial” and wrote about it for the first time in a consumer book on ADHD—and more thoroughly than the rare mention in a clinical guide, too.)
I was also curious about so many points. For example:
- For those whose ADHD partners had tried medication, what factors seemed to contribute to its success or failure
- How many evaluations did their ADHD partner pursue before receiving an accurate diagnosis (that is, not depression or bipolar disorder but ADHD)?
- What was their experience with prescribers and therapists?
- Did their reactions to their ADHD partners problematic behaviors change once they learned more about ADHD?
Simply put, the partners tended to have better recall about experiences with physicians and therapists than did many of the adults with ADHD. That should come as no surprise but it struck me as an important avenue to explore.
And, what about these other conversational threads—reports of daredevil driving, of unhealthy diets, poorly managed diabetes and hypertension. I was seeing evidence that the “personality problems” were much more than that.
Given the widespread “denial” about ADHD in general psychiatry and in couple therapy, I felt like Alice fallen through the rabbit hole.
2002: Designing and Preparing to Launch the Survey
To ground myself in the known science at the time, I dove into the peer-reviewed research, on every tangential topic to ADHD. I sought to “connect the dots” in areas such as sleep apnea and other physiological processes largely controlled by dopamine transmission. The more I read, the more I grew astounded by the broad-reaching implications of the underlying neurobiology. There was far more than “focus” and “couples troubles” at stake; ADHD seemingly posed real health risks for some people who have it. I actually wrote to Russell Barkley
Almost 20 years later, research from Russell Barkley et al confirmed my observations. Yes, there are elevated health risks to ADHD, including premature death.
The next step: I set to work developing and conducting a comprehensive survey. I had theories on a variety of topics but wanted to substantiate them. . With data, I could make a stronger case for 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 echo my findings in many areas.
(I touch upon some of this research in my new book, co-edited with Arthur Robin, PhD: Adult ADHD-Focused Couple Therapy: Clinical Interventions. Some ADHD Partner Survey results are published in Dr. 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.)
2019: Still the Largest, Most Rigorous Survey on ADHD And Relationships
To date, the ADHD Partner Survey is the largest, most comprehensive survey on this subject. Although not scientific, its methods were rigorous. (My scientist-husband says I earned two PhDs on this project.)
- The survey was not randomly constructed and posted on a website for anyone to take, willy nilly. Rather, I interviewed each potential respondent and had been following their stories.
- The survey had conditional logic on dozens of topics. Only those who, for example, were co-parents or entrepreneurs, who had pursued couple therapy, or who had declared bankruptcy, answered questions on those topics
- 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 covered that population. But it also offers a rarer, more intimate glimpse into lives wherein ADHD has gone unrecognized and untreated for decades—and firmly remained that way.
- In 2014, when Russell Barkley, PhD, asked me to write the first-ever chapter on couple therapy for his “gold standard” ADHD clinical guide, he approved of including survey data. That’s because, even almost 10 years after the survey, it was still the best data.
All ADHD Partners Had Been Formally Diagnosed
Of the 118 respondents whose partners had sought an evaluation during the relationship, 116 received a dianosis. (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 ADHD 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 ADHD.
The professional gathered information from multiple sources (tests, interviews, etc.).
The professional used ADHD 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 fit one of two other criteria:
- They 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 examine responses from the 111 respondents with ADHD partners who have been diagnosed (and who the respondent knew before the ADHD partner started taking medication).
We do not know how data from support-group members (the majority of survey respondents) compares to a control group. By a control group, I mean individuals 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. Yet 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. To know they aren’t alone.
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. The completion rate is also noteworthy. 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 meaning, the respondents should be qualified. I limited participants 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:
- 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