Chances are you have encountered a young person who has Attention Deficit Hyperactivity Disorder (ADHD). In the early 1980s, ADHD was deemed the culprit for anyone, aged 3-18, who showed signs of hyperactivity. In recent years, the defining symptoms have increased, and they are not unlike those of other pediatric mental disorders. Doctors say the ambiguity of symptoms makes it difficult for to provide a proper diagnosis without a systematic trial-and-error process.
One north Texas caregiver shared her experience with ADHD. After her teenaged niece was suspended from several schools in her hometown, Lynn Jay was granted guardianship.
“It was a lot,” Jay said. “And as she [Jay’s live-in niece] got older, it [behavioral problems at home and school] actually progressed and got worse. It affected my entire household in many, many ways.”
Like many other parents and caregivers, Jay and the teen she cares for fell victim to a broken mental health system.
“The initial visit probably took 20 to 30 minutes to get all the paperwork done and speak to somebody [not a doctor],” Jay said. “That was just sending in the paperwork.”
Spending half an hour filling out paperwork that would be faxed or mailed to a physician was just the beginning of the process.
“After I got an official diagnosis [ADHD], then it was up to me to find a psychiatrist that would actually treat her,” Jay said.
With no referral or advice on where to begin, Jay started her search. But, beginning treatment did not offer the solace this north Texas family had hoped for.
“The medication was making her zombified,” Jay said. “She was always just—out of it, in a different place. I just really hated seeing her like that.”
Finding a psychiatrist whom she trusted and her niece felt comfortable with was a tedious process. During the search, Jay said she felt as though her family member was a test subject.
“They [the psychiatrist] changed her medication a few times,” Jay said. “And then, her body pretty much became immune to it [various medications] until they eventually changed her medication to one that was time released.”
Getting the right medication and dosage was a long, hard fight. The process was sometimes dehumanizing.
“She was admitted into Millwood Hospital, and I felt bad because it was almost like she was being sent off to prison,” Jay said.
Millwood, best known for crisis intervention, seemed to have some trouble with proper dosing also.
“During the visits, I’d have to go and speak with the doctors because it was clear that her medication was too high,” Jay said. “She was highly educated [but] it was very difficult to speak to her because she was so zoned out.”
Jay’s family member is one of more than 5,000,000, according to the National Health Interview Survey, affected by ADHD. And, she is not alone in her battle to find adequate medical treatment. The National Alliance on Mental Health (NAMI) says resources aren’t always available.
“States have cut vital services for tens of thousands of youth and adults living with the most serious mental illness. These services include community and hospital based psychiatric care, housing, and access to medications,” NAMI reports.
In some cases, the results of the deficiency have been fatal.
“These personal tragedies [‘suicides, homelessness, incarceration, school dropout and more’] also occur because of our failure to provide access to effective mental health services and supports,” NAMI reports.
In order to compensate, Jay sought alternative treatments for ADHD. By researching treatment alternatives, Jay has learned some effective techniques, such as art therapy and horseback riding, that have worked for her loved one. Her advice to other parents and caregivers is to do plenty of research.
“Do a lot of research on what they’re being diagnosed with,” Jay said. Try a method where you don’t have to give medications. If you can just keep them busy and focused, sometimes, you don’t have to use medication.”
Editor’s note: The name of the individual in this story has been altered to protect her identity.