Missed ADHD Diagnosis, Lost Childhood

March 11, 2014— -- Reckless, impulsive, distracted. Andrea Frank, a 38-year-old nurse’s assistant from Wisconsin, said those words pretty much sum up her behavior from early childhood onward.

Though obviously bright, she did so poorly in school she was left back several times, dropping out in her junior year of high school. Parents and teachers tried to motivate her, she said, but ultimately they wrote her off as lazy and unfocused.

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“I always felt awkward and odd,” Frank recalled. “I couldn’t find a place to fit in.”

Frank drifted into adulthood, never living up to her potential. Eventually she married and had two sons, Colin and Josh. When the boys were still toddlers they began exhibiting many of the same hyperactive and inattentive behaviors Frank had as a child. That’s when she knew she had to find some answers.

Eight years ago a doctor diagnosed Frank and her sons, now 11 and 13, with attention deficit hyperactivity disorder, or ADHD. ADHD is a common childhood condition characterized by far more than normal difficulty with focus, behavior control, impulsivity and hyperactivity – exactly the symptoms Frank and her boys experienced.

“That diagnosis changed my life,” Frank said. “It made me feel like a person, like I could finally explain the way I am and have it make sense.”

A Slower Changing Brain

ADHD affects 9 percent of children younger than 18 and about 4.1 percent of American adults, according to the National Institute of Mental Health. Boys are four times more likely to be diagnosed with the condition as girls but after adolescence, males and females are diagnosed in equal numbers. Some kids grow out of it, and some, like Frank, never do.

Doctors aren’t entirely clear what causes ADHD. It could be a combination of genes and environment, said Sue Visser, a lead epidemiologist with the National Centers on Birth Defects and Developmental Disabilities.

“We do know that children with ADHD have brains that develop differently,” Visser explained.

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Visser said that when a child’s brain grows normally it goes through a “synaptic pruning,” a process where the brain consolidates and reorganizes its connections so it can operate more efficiently. But in the brain of a child who has ADHD, synaptic pruning is delayed by about three years.

The brains of many children with ADHD do catch up eventually and adolescence or early adulthood, their ADHD symptoms fade away. But for some people, ADHD is a chronic, lifelong condition, Visser said.

Diagnosis and Treatment

The criteria for diagnosing ADHD are very clear, Visser said. However, since it shares traits with many other mental health conditions, it is notoriously difficult to diagnose. A thorough assessment by a professional is essential, Visser said.

“This is not something you can diagnose or manage on your own,” she said.

Treatment for ADHD varies with age. For very younger children, Visser said that behavioral therapy is usually the go-to method with medications being given as a last resort. After the age of 6, however, most mental health experts believe that stimulant drugs in combination with therapy works best. Experts almost always recommend adults with ADHD take some type of medication to manage their symptoms.

With or without treatment, Visser said many people with ADHD have an uphill battle in life. They often have trouble with relationships, school and jobs, and a high percentage of them are also diagnosed with other mental disorders such as clinical depression and anxiety.

Frank’s children are on medication, which she said has improved their behavior tremendously. She herself tried several types of medication early on but, among other side effects, they made her feel too sluggish. Frank said she now manages her symptoms under her doctor’s watchful eye, with nutritional supplements, diet and behavior modification.

While Visser said every case is individual and each patient will have to manage differently, she cautioned that Frank’s more natural approach won’t work for everyone.

“There’s not a lot of safety data on the use of nutritional supplements in ADHD treatment. We don’t fully understand the risks and benefits,” she said.

Frank said she still has trouble with organization and time management but she tries to focus on the upside of ADHD. She said she’s always full of energy and ideas and she’s a terrific multitasker. Her biggest challenge is getting her friends and family to recognize that ADHD is a real, medical problem that requires medication for her children and behavioral therapy for all of them.

“That is the thing people don’t get. It’s like autism or a heart condition – it does exist. It’s an uphill battle to get people to believe it<” she said.

ADHD Tweet Chat today at 1 p.m., ET

To share what she’s learned with others, Frank started a Facebook page, ADHD Kid’s Care Support Group. After three years, the page now hosts more than 25,000 members across eight different groups including two for adults with ADHD. She’s also a member of another large Internet support group, The Manhattan Adult ADD Support Group.

Frank said she believed social media can be a powerful ally for families who live with ADHD. That’s why she’s joining ABC News Health for an ADHD tweet chat today.

The chat is hosted by Dr. Richard Besser, chief health and medical correspondent with ABC News. Experts, advocates and people living with ADHD will be tweeting in to offer their thoughts about how to help anyone of any age with the condition.

Related: Did Drug Company Over Promote ADHD Diagnosis?

If you or someone you know has ADHD, please feel free to join the chat. Even if you’re new to Twitter, learning to tweet chat is easy. Here’s how.