Expert Terry Matlen's ADHD Diagnosis
It’s a classic story, in a sense.The quiet child who never got into trouble. The teacher’s pet. The sensitive one who had a rich inner life, worrying about the squirrels freezing in winter and dogs getting hit by cars in the summer. The little school girl who gazed out the window, lost in her own secret world, while the rest of the class enjoyed being read to and learning about numbers, state capitals and the life cycle of a chicken.
I was lucky, though. None of my teachers, let alone my parents, would ever know that I got through my early years school by sheer luck and I suppose, a keen mind. How I was able to get through without doing homework or listening to the teacher; I’ll never know. But then I hit the famous “ADHD wall”- that’s when undiagnosed, untreated kids with ADHD find they can’t keep up with the academic challenges and then fall apart. For me, it happened in 6th grade when, after the death of my father a few years earlier, I found myself in a new house, new neighborhood, new school. We had left the city for the suburbs and my new classmates were light years ahead of me in every way. Academically, they were at least a year ahead of where I was in the city school. Socially, they were becoming teenagers, while I was still lost in childhood, oblivious to the interests of most girls my age.
I fell behind quickly and sadly, didn’t catch up for many years. What was the problem? I had undiagnosed ADHD and anxiety.
The rest of my academic career is for another story, another time. What I’d like to do here is to share with you how I discovered my ADHD.
For many of you, that time happens when you, too, hit the wall. It could be in your youth, when your grades slipped or your behaviors got you in trouble. But more than likely, it happened when you became an adult and found you could no longer juggle all the balls: marriage, work, raising children, keeping up the house, paying bills on time, etc. etc. Or perhaps your child was having difficulties and when you explored how you could help him/her, you discovered that it was ADHD behind it all. In reflecting on the difficulties of your child’s history, you had a rude awakening…"hey, that’s exactly how I was as a child, "and you, too, found yourself diagnosed (and hopefully treated) for your own ADHD.
My case was a bit different.
Let me tell you about my own “aha” moment- the events in my life that led to my own diagnosis of ADHD.
It was June of 1989, when every mother’s nightmare became a reality for me. I found my 16 month old daughter writhing strangely in her crib in the middle of the night. Her eyes were wide open, but they were held a vacant stare. I instantly recognized what appeared to be a febrile seizure. Having seen this same scenario five years earlier at a friend’s house, whose daughter was having seizures, I knew to rush my baby to the bathtub and run tepid water over her to bring down her body temperature. However, in my daughter’s case, it didn’t work. Her body continued to shake and tremble and her body remained hot to the touch.
EMS came, we rushed to the hospital and long story short, my daughter was suffering from encephalitis; a reaction to the MMR vaccine she’d had 8 days earlier. She was horribly ill and hospitalized for nearly three weeks, which included four days in a drug-induced coma to stop the seizures. When she was awakened, she was no longer the child I had known. She had lost all functioning- everything- her memory, her ability to walk and talk. It was all gone. We were told her future was unclear. The doctors couldn’t predict whether she’d ever walk or talk again. Thankfully, she did both, after much therapy and very long days of hoping, crying and sweating it out.
My little girl, Mackenzie, began to regain her strength. But it was clear that she would have to re-learn everything, and we could only hope she’d catch up. Physically, she did. And more. Not only did she regain her gross motor skills, she also became severely hyperactive and impulsive.
Unlike most people with ADHD, Mackenzie wasn’t born with it (from what I can tell); she “acquired” it from the encephalitis. The following months were a nightmare- trying to keep up with a toddler who went from being a listless rag doll to an out of control warrior. She not only learned to walk again, she became a reckless runner, but with poor coordination- a disastrous combination. In fact, her hyperactivity was so severe, she was unable to sit for more than a few seconds. She was in constant motion; she couldn’t even attend long enough to play with her toys. Worse, she couldn’t nap or sleep- I had to lay on her in her crib in order to stop her limbs from flailing so she could sleep for 20 minutes at a time.
Why am I telling you all of this? Because in trying to learn about Mackenzie’s severe ADHD, I discovered my own. You see, in reading, studying and researching everything I could about how to help my baby, I serendipitously fell upon a book about adult ADHD, titled “Attention Deficit Disorder in Adults”, by Dr. Lynn Weiss. I nearly dropped the book when I read descriptions of various family members. Then, it happened- the flash of realization that much of what Dr. Weiss was describing also fit me to a “t”. I was floored My inattention, disorganization, chronic clutter, not finishing projects, etc. etc. were detailed in this book!
I hungrily looked for more information and found Driven by Distraction, by Drs. Hallowell and Ratey. Again, I was amazed that these two men could explain so clearly the difficulties I’d experienced throughout my life. Then came Sari Solden’s “Women with Attention Deficit Disorder”, which I cried through. Page after page described my inner life in detail. Finally, someone who not only understood ADHD in women, but who could write about it in a way that tugged at my heart, opened it and filled it with hope.
For some, this light bulb moment feels like a knife in the heart. Depression often sets in and there’s tremendous sadness about the many years lost to this “disorder.” But for me, it was a relief that words couldn’t express. It was the answer to WHY I found seemingly simple things impossible for me to handle, like keeping the house clean, cooking a meal, finishing a book, etc. How was I able to earn two college degrees yet _un_able to keep a closet organized? Why would I enter a supermarket and leave with items other than the ones I had intended to buy? And worse, why was I in a constant state of anxiety in such settings? Malls and grocery stores always left me in a state of panic. It wasn’t until years later that I learned that being bombarded with stimuli and shutting down were part of how my ADHD affected me.
These books gave me my life back and gave me hope. I wasted no time in pursuing the gnawing question: could I really have ADHD? Or was I simply lazy and disorganized; a character flaw that haunted me all of my life?
I found a psychologist in my area who had expertise in diagnosing ADHD in adults. After weeks of waiting for my appointment, I finally had the evaluation and my suspicions were confirmed: I did, indeed have inattentive ADHD.
Perhaps being a psychotherapist myself made it easier for me to pick up the phone and find a therapist; someone who could help me fit the pieces together to help me understand what was “wrong” with me all these years.
Therapy taught me the facts about ADHD- that there’s a strong genetic component. That it’s highly treatable, but that its effect of living with it for 40 years did take its toll on me and my self-esteem. There was much work to do to gain back the confidence I’d lost over the years and to begin making decisions that worked FOR my ADHD instead of against it.
When I saw the dramatic change of learning about my own ADHD, I knew I wanted to help others, too, who were living their scattered lives thinking they were flawed mothers, fathers, partners, college students, employees, etc. So years after my daughter’s illness, when I could begin to focus on my life again, I became very involved in the world of ADHD; from joining the ADDA board of directors (https://www.add.org/), to running my local CHADD chapter (https://www.chadd.org/), then opening a private practice, and finally, launching my consulting/resource website at https://www.addconsults.com/ .
I began to lecture locally and nationally on ADHD, and in 2005, published my own book, “Survival Tips for Women with ADHD.”
In addition to raising my two daughters, I also found time to make art and music in my home studios.
Could I have done all of this had I not gotten the ADHD diagnosis and proper treatment? I highly doubt it. And that’s why my mission is to help others
come up from the darkness of distractions, inattention and brain fog, to find their true selves and move forward with their wonderful strengths and gifts.
Do you have a similar story? Are you ready to take a personal journey to find the answers to the questions haunting you about your own procrastination, inattention, impulsivity? Could it be ADHD? Please share it with us; we’d love to hear from you.
Terry wrote for HealthCentral as a patient expert for ADHD.