*A note on the use of the terms ADD and ADHD: As research and understanding of ADHD has grown over the decades, the diagnosis name and description has evolved. As a result, many people, especially those who were diagnosed with ADHD or worked with individuals with ADHD before the publication of the DSM-IV in 1994, often use the terms “ADHD” and “ADD” interchangeably.
Sari Solden, MS, LMFT, is a guru in the field of women with ADHD, and I’m grateful to have her as my mentor, colleague, and friend. This year we both have a lot to celebrate. I want to share with you a conversation I recently had with Sari, mentor to mentee, that reflected upon the last 25 years of her work with women with ADD.
Michelle: I came to work at Sari Solden & Associates one year ago this October, coincidentally the same month as the 20th anniversary of your groundbreaking, best-selling book, Women with Attention Deficit Disorder.
For professionals Women with ADD is required reading and, for many women with ADHD, it’s a source of huge revelations and turning points in their journeys. But 20 years ago no one knew to look for a book about this because no one was talking about it. What led you to write it?
Sari: For me, this journey began in the very early 90s when we were first understanding that adults could still have struggles with ADHD even if they lost the hyperactivity that led them (mostly boys) to get diagnosed in the first place. We started to see the first books and research on these adults. Before that, we thought that adults just grew out of it since they often lost their hyperactivity. But, even with this breakthrough, women didn’t see themselves described in ways that completely resonated with how they experienced these challenges.
Women kept telling me that they had to keep translating this new information to make it fit their experiences.
At that time, I was working at a counseling agency with adults who had learning disabilities and I realized that a lot of these adults were describing the disorganization and attention problems of ADD. I also noticed that the women seemed to have much more shame about their challenges. The men had more support at work and at home and they weren’t as burdened by the same sort of cultural messages about gender roles as women. So I started tracking the experiences of women and the difference between men and women struggling with these challenges.
Michelle: Were people then talking about executive functioning?
Sari: That term wasn’t used commonly when discussing ADHD back then, even though the problems people described were absolutely about their executive functioning challenges.
For women, there was the added layer of what happens when these challenges collide with gender expectations; they felt they were failing to meet these roles and failing as women as a result.
The revised edition of my book talks about executive functioning. Before the newest edition of my book was released, all that was talked about was the triad: hyperactivity, impulsivity, and distractibility. If you didn’t have these three things, you didn’t have ADD (now known as ADHD).
Michelle: The idea that adults, and women in particular, could have ADHD was a new concept.
Sari: Our concept of ADD had been based on clinic-referred, hyperactive school-aged boys who were acting-out in the classroom. Before that time, the focus of ADD organizations and conferences was on hyperactive, impulsive boys, with teachers, parents and experts talking about what to do. It was a hierarchical model of experts educating lay people in a formal conference setting.
In 1993, we had the very first adult conference – a precursor to ADDA – and we started to talk about issues specific to adults with ADHD and, perhaps more importantly, adults started to talk to eachother.
Attendees of that first conference in Ann Arbor had a revelation: Here were people who were living lives very similar to theirs in many ways and they were all hiding to some extent in their everyday lives. Here were hundreds of smart, energetic, creative, fun people who found themselves together in the same room for four days. You can imagine the possibilities!
Michelle: There was an important shift then, towards connection and collaboration. And ADDA seems to have been part of it. What was different about ADDA, once it came together?
Sari: ADDA continued this way of doing things at their first conference in 1995. What was different about ADDA was that many of the presenters and experts in the early days of adult ADD had ADD themselves and were involved with ADDA, so it was a very progressive non-hierarchical movement from the beginning.
Once adults began to be seen and heard and make their presence felt in the field, women specifically began to define for themselves their own unique experiences.
ADDA was a big early supporter of the women’s ADHD movement. I saw writing and speaking about women with ADD as a feminist-based movement, because it meant defining our experience for ourselves.
There was push-back at first from some in the field who thought that only the few academics could say what was the truth of women’s experiences and struggles.
Michelle: What else contributed to the transformations happening in the ADHD community at that time?
Sari: What changed, in addition to ADDA, was the emergence of the Internet around the same time. We started out at the first conferences hovering over computers in AOL chats and we’d dictate messages or have written chats. Women started connecting to each other all over the world and felt empowered by being able to define themselves and share their own experiences, unfiltered, with other women after years of isolation.
Michelle: Your book has taught a lot of people many important things about living successfully and authentically as a woman with ADHD. You have changed people’s perspectives and given them validation and freedom in a culture filled with stigma and unrealistic expectations of success. A lot of my clients have said the same thing, “It’s like she knows my whole life.” I certainly felt that way about the book. So, I’m curious, how did the book change you?
Sari: The book did change my life, completely. First, of course, getting diagnosed and treated allowed me to write the book in the first place. I was doing well, but I was paying a huge price and internally that was very distressing. Reading You Mean I’m Not Crazy, Stupid, or Lazy by Peggy Ramundo and Kate Kelly and Driven to Distraction by Ned Hallowell and John Ratey, meeting them and gaining their support in these early days helped me understand my challenges. They also inspired me to focus in this field.
What happened after it was published changed the course of my personal and professional life forever and to this day.
It was very healing for the women who read it, but the effect and connection and visibility professionally, being able to manifest my ideas and work by writing this book that so many found so helpful was healing to me. It gave me the chance to be invited to travel all over the world to speak to and connect with these women who I never would have had the chance to meet otherwise.
Michelle: Why do you think the book had so much power for these women?
Sari: I think that in addition to breaking their sense of isolation and helping increase their understanding of their experiences, my publisher let me leave a little more of my raw voice than is typical. It was edited a lot but I wanted to leave my authentic voice in there and I think that allowed the book to have more power: it wasn’t over-edited.
Michelle: I like what you said – that you didn’t want them to over-edit your voice, that you wanted to leave your authentic voice in there. I think that represents so much of the work that we do.
Women don’t want to be so edited, they want to their authentic voice to be heard often feel that they have to meet a certain standard; they feel that other people have to approve of what they say, how they live their lives.
And the truth is, when you say, “I don’t want to be so edited, to fit within these parameters,” you feel empowered and free and people can connect with that. You’re being yourself, not an edited, pared down version. It parallels your work.
Sari: Right, not watered down.
Especially because on the surface women with ADD look like they have a lot going on and they pull it together, but they don’t want people to see the mess around the edges, and the goal is to let people see who they are inside.
The biggest issue women have is when they can’t manifest who they really are, can’t show people what they really think or share their gifts because they can’t express it very well. On the one hand, they want to connect and open up, yet on the other hand, they felt like they’re not going to be accepted. Letting women have their voice is the long-term goal and it takes a while for women to feel acceptable enough to themselves. To feel that they can say what they want, what they need, who they are.
Michelle: Given the last 20 years of women with ADHD…it’s 2015…what gives you hope and pride when thinking of the future of the field?
Sari: I see this as just another diversity issue and we have to approach women with these invisible differences, with ADHD, as women with neurodiversity-related differences. I think society, in a way, is becoming more educated and tolerant but there are still a lot of stereotypes and there is a lot of stigma to overcome.
It’s about a spectrum of neurodiversity and we have to get over what I have termed neurobigotry and neuroprofiling: judgment because you have an invisible difference.
So what gives me hope is when people like you come into the field, seeing the next generation of therapists coming into this field.
It’s good to know there is a legacy; this work is not going to end. It’s surprising, but there are still very few people who understand this, who specialize in women with ADHD. I get asked this question all the time. There are very few people who understand it still.
What gives me the most pride is the work I do everyday and the women I hear from all over the world.
And the women that will be joining together for our upcoming event in May, 2016 from all over the world to appreciate each other and connect with each other and to show their amazing skills and talents together. Because I know that now women with ADHD are much more connected and that gives me hope.
Soon we’ll just be talking about human beings and their strengths and uniqueness and gifts and diversity. Not just as people with this label of ADHD, but people who think differently, and they will be able to find people they can relate to and enjoy.
My hope is things continue to open up like that and we don’t put people into these little boxes but recognize and accept differences. There are a lot of people in the world that just think differently and feel different. And my hope is that people find avenues to be with people who understand them.
Michelle: And lend their unique gifts. Given that you think differently there are probably some really unique gifts you have to offer the world because of that.
Sari: And we’re finding more and more, our challenge as a field, is to find new ways for that to happen. And not just have conferences.
Michelle: So we have a big event coming up that does just that!
Sari: Right, we can’t have the same thing over and over and over again. People were doing teleconferences for a long time.
The ADDA conferences have showed us that there’s no substitute to being together for a few days and sharing that feeling. So, instead of a top-down, hierarchical conference, where people are just being told things about themselves, we’re having a collaborative celebration.
A lot of people know a lot of the information and now they want a place to connect and be together and share their considerable gifts and to be together. And that’s why we’re having this festival!
Michelle: So we’re launching it this month (September). We’re really excited!
We’re calling it a non-conference, a festival, a celebration of the last 20 years of women with ADHD. We’re going to have a pep rally, hangout sessions instead of breakout sessions where you can connect with experts in the field causally, one-on-one.
Sari: Yeah. We’re tired of having the top-down thing. This is more of a feminist, non-hierarchical thing.
Michelle: Collaborative. We’re going to have women with ADHD share some of their turning points, their stories. Experts and women with ADHD alike sharing inspirational remarks at a pep rally. We’re going to have a talent show, a la ADDA! And even a bit of an art gallery and live music all day.
You and I know this event like the back of our hands at this point, but what can’t be communicated on the postcard or event flyer that you want people to know?
Sari: I just have this picture, this image in my mind, so it’s a bit difficult to put it into words. But I have this picture of this beautiful park with all these wonderful, warm women that I’ve known and heard from for the last 20 years finding a time and a place just for themselves, and to bring along people – men as well as women – who have supported them all these years. And for me it’s a way to give back and thank people in the whole professional community who have supported me and supported the cause of women with ADD all these years.
Maybe I’m trying to be a model for women with ADD because I had to push myself to do this to tell you the truth…I had to push myself to celebrate my accomplishments publicly; I had to push myself to take the risk that anybody would care.
I had to push myself to put my voice out there and take the chance to put my vision out there and that people would understand what I was trying to say. Because people with ADD, deep down, you always carry with you that fear that feeling that people aren’t going to understand what you’re trying to do.
I think that what was so healing about the book on a personal level was that people really “got” what I was trying to say and that I wasn’t so different. There were hundreds of thousands of people out there who did share my vision and share my understanding of women with ADD and now this event is the culminating event…I’m putting out what I want to see happen and I guess just selfishly bring together all these women I love for a day!