In this post, I explain why I conducted the ADHD Partner Survey, the results of which I share in this category.

Before I began writing Is It You, Me, or Adult A.D.D.?, I’d spent several years facilitating ADHD Partner — an online discussion group for the partners of adults with ADHD. This all started around 1999.

(The group is still going, expanded to include private Zoom groups. Including one solely for men with female ADHD Partners. For more information, visit Join the ADHD Partner Community)

Motivation for Creating ADHD Partner Survey

When my husband received his diagnosis in the late 1990s, I found myself shocked at the ignorance of Adult ADHD among doctors and therapists—not to mention the general public.

The implications of ignoring a neuro-cognitive condition with such high prevalence seemed a public health disaster—a massive one. The need was desperate. So, I decided to pause my career to volunteer in helping others. That included organizing lectures locally with ADHD clinicians and leading two discussion groups:
 
  1. A local group for adults with ADHD
  2. A local and an online group for the partners of adults with ADHD

That brings us to the ADHD Partner Survey. Why did I spend grueling months on a too-slow computer designing it and collecting responses?   Because someone had to start seriously studying the potential effects of ADHD on relationships. With data. Not speculation.

1999: We Were Forging New Ground

In the “partners of” discussion 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 public largely remained skeptical.

The particular issues of relationships, or the idea that the “partners of” might need help—just as their ADHD Partners did?  Mostly not on anyone’s radar screen. 

Instead, rank-and-file clinicians tended to view the partners and spouses as the executive assistants for their ADHD Partner. Not teamwork—service. If they balked at the lack of consideration for their needs, they were viewed uncooperative and non-compassionate.

Surrounded by ADHD  “Denialism”

In fact, one well-known psychiatrist constantly made the media rounds portraying ADHD as a gift. That’s not all. In the lectures I attended at that time, he said, “The biggest problem people with ADHD have is marrying people and working for bosses who are sadistic and controlling.”

(Indeed, I would hear him repeat his boilerplate presentation for 20 years.  Finally, his reputation for being inappropriate with women finally came to public light. But many people don’t know about that.)

His perspective did not jibe with the stories of struggles I was hearing from the partners with ADHD—and the adults with ADHD themselves. The stories weren’t about life-of-the-party successful entrepreneurs. 

In both my partners group and adult ADHD group, 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, sleep, health habits, 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.

Also, I wondered:  What about subjects members felt too timid to broach, including sexual challenges or even interpersonal violence?

Certainly, many 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.)

Experiences with Evaluation and Treatment

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.

What About Physical Health Issues?

Finally, what about these other conversational threads—reports of daredevil driving, of unhealthy diets, poorly managed diabetes and hypertension.  The evidence was mounting:  These “personality problems” manifested in some serious health problems.

Given the widespread “denial” about ADHD in general psychiatry and in couple therapy, I felt like Alice fallen through the rabbit hole.

2002: Designing, Preparing to Launch ADHD Partner 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.

Confirmation From Barkley Et Al’s Research

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, who validated. my perceptions and said research was in the making.

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.

Survey Results Confirmed by Independent Research

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.

Still the Most Rigorous Survey on ADHD And Relationships

To date, the ADHD Partner Survey is the largest, most comprehensive survey on ADHD and relationships.  And it goes much farther than the typical “relationship” issue. Although not scientific, its methods were rigorous.  (My scientist-husband says I earned one PhD with the survey and another with my first book.)

ADHD Partner Survey Design:

  • 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, some for years.
  • 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 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.

ADHD Partners Had Been Formally Diagnosed

Of the 118 respondents whose partners had sought an evaluation during the relationship, 116 received a diagnosis.  (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.
64.41%
76
The professional gathered information from multiple sources (tests, interviews, etc.).
45.76%
54
The professional used ADHD symptom checklists.
59.32%
70
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)
44.07%
52
The professional asked for a detailed history of partner’s past and current functioning.
62.71%
74
The professional obtained information from family members or you (people who know your partner well).
48.31%
57
The professional also evaluated for the possible presence of co-existing conditions (anxiety, depression, etc.).
44.92%
53
Brief office visit only; no tests or input from family members or significant others.
16.10%
19
Don’t know what took place.
13.56%

Selected Data

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:

  1. They knew their ADHD partners before medication treatment (79 percent of the 111), or
  2. 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).

ADHD Partner Survey Limitations

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.

ADHD Partner Survey Method

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.

ADHD Partner Survey Participants

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.

—Gina Pera

Click here to return to the archive of ADHD Partner Survey posts 

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