If there's one thing that’s clear about ADHD, it's that people have very different experiences with the diagnosis and treatment process. Some people discover their ADHD at a very early age and are able to receive accommodations throughout school. Others ride the undiagnosed roller coaster for years and don't receive their ADHD diagnosis until adulthood.
Receiving an ADHD diagnosis in adulthood can be a huge relief and a huge source of frustration at the same time (check out The Complex Journey of an ADHD Diagnosis in Adulthood to read more about this). When someone receives a diagnosis in adulthood, they might feel very confused about where to go next and what support might work best for them.
As an ADHD Coach, I can speak to the research, skills, and techniques to help manage a newly-learned ADHD diagnosis. But I wanted to learn more about the unique experiences that people had when they were first diagnosed. So, I asked my ADHD community to share their stories by answering these questions...
How old were you when you got your ADHD diagnosis? What was that experience like for you? What is the most effective treatment for your ADHD symptoms? What advice would you give to a newly diagnosed adult?
The first interesting story that the data shows is that the age of ADHD diagnosis of the people who responded to the survey is split almost evenly among age groups. I don’t know what picture I expected the data to paint, but I definitely wasn’t expecting the results to be so balanced.
The second interesting story that the data tells is that there are no age-related patterns or trends among experiences. I was curious to see if people diagnosed in their 20’s had similar experiences that differed significantly from the experiences of people in their 40’s. The data shows that this was not the case at all. In fact, while patterns and trends did emerge in the data, they were apparent in every single age group. This only reinforces to me that receiving an ADHD diagnosis, especially in adulthood, is a uniquely individual and universal experience at the same time.
Two (vastly different) Experiences
Whether in their 20’s or your 50’s, the people who responded to the questions I posed illustrated two distinct reactions to receiving an ADHD diagnosis in adulthood: relief and understanding, or grief and confusion.
Relief and Understanding
Several people who responded to the survey remarked that their diagnosis helped them “make sense” of their lives. It was common for people to say that “suddenly, everything made sense.” Habits, patterns, and ways of being were explained in an instant. Finally understanding “why I am the way I am” tended to bring a sense of relief and greater self-awareness of how their brains work. And this seemed to make life just a bit easier moving forward.
Grief and Confusion
Several other comments, however, shared a different experience. Many people noted that they felt confused, emotional (devastated, even), or rejected the diagnosis at first. A common theme in these comments was a certain level of frustration with the medical professionals from whom they were seeking treatment. People shared stories of working with therapists for multiple years before discovering their diagnosis, or of being diagnosed by doctors or psychiatrists who were untrained in ADHD (and therefore making the experience more traumatic than it needed to be). The frequency of these unfortunate diagnostic and treatment experiences reinforces to me the importance of knowing how to locate a trained professional who is experienced in ADHD.
The Heartfelt Advice That Was Given
In addition to sharing their experiences of receiving the diagnosis, I also asked people to share their own personal pearls of wisdom about having ADHD. And the responses to this part of the survey did not surprise me at all!
Across the board, commenters discussed four very clear "absolutes” for people who are newly diagnosed with ADHD.
Medication Helps.... A Lot!
Just about every single response mentioned how helpful medication has been in keeping ADHD symptoms under control. Some people said that they had to try a few different ones before they found the “right one” (so don’t get discouraged if this is your experience, too). But it was definitely unanimous that medication is a vital part of ADHD management.
Learn, Learn, Learn
The second most common piece of advice that people gave was how imperative it is to learn – learn about yourself and your symptoms, learn about the diagnosis itself, and learn about all the different treatment options. Multiple people advised folks to “be curious” and “seek to understand.” Others said to “read books,” “listen to podcasts,” or “check out helpful websites.” It was almost unanimous that educating yourself is a vital component to accepting your diagnosis and moving forward toward treatment.
Change Your Habits
Several people also discussed how helpful it has been to change their habits and behaviors. As one commenter put it, “routines are your friend.” As I discuss in several of my articles (here are some recent ones: Refuel Your ADHD Brain with Better Breaks, Multi-Tasking Got You Down?, How to Help Your ADHD Brain Handle Disruptions Part I and Part II), changing behaviors can have a big impact. Even making small micro-changes can help increase your focus and productivity (not to mention the quality of your work) significantly. By establishing new habits and behaviors, you are training yourself to work with your ADHD brain, not against it like people often do.
Community Is Key
The last “absolute” that people discussed in their comments was how important community is. Connecting with an ADHD-focused support group, coaching group, or therapy group allows you to build relationships with other people who have had similar struggles and experiences in life. It provides you an opportunity to learn from them and get support from people who “get it.” As one commenter put it, “find an ADHD support group or at least one other person who has ADHD that understands your frustrations and the frustrations of those around you, to support you emotionally and help you chart a course around common pitfalls.”
In addition to the stories and advice shared, most commenters also included words of encouragement in their responses. On person wanted newly-diagnosed adults to know that “You are not broken. You have SUCH a huge gift; you just have to learn how to properly channel it...” Another person said, “Try to accept it for what it is without judgement or shame - it is not a character indictment.” And multiple comments encouraged people to “Accept yourself exactly as you are.” This is very good advice indeed!
A special Thank You to everyone who shared their experiences. Your responses are greatly appreciated!