ADHD: What it's really like

A look at the symptoms, the medical treatment and what parents are doing to cope at home

Photo: hidesy/iStockphoto

Arriving home from kindergarten one day, Michael* announced, “The teacher said she was going to light firecrackers under my arms to get me moving, because I’m so slow and pokey.”

That was his parents’ first indication something might be wrong at school. At home, Lynn and Andrew Hughes, parents of three boys in Simcoe, Ont., began to notice how their son Michael would drift away from his homework, or reappear empty-handed 20 minutes after being sent upstairs to get something.

The Hughess wouldn’t have a name for the apparently laziness and disorganization troubling their son until he got to grade three, when a paediatrician diagnosed Michael with ADHD, even though he didn’t exhibit the hyperactivity that most people associate with it.

Most of us are familiar with Attention Deficit Hyperactivity Disorder, a common disorder with symptoms that fall into three categories — hyperactivity, which includes fidgeting or exploring inappropriately; impulsivity; and inattention.

Symptoms are the primary yardstick doctors use to judge whether a child has ADHD. There’s no lab test —one of the things that make ADHD difficult to diagnose. More difficult still is the fact that while most kids with ADHD have symptoms from all three categories, some are mostly hyperactive and impulsive without the inattention, while others, like Michael, have problems only with inattention. (It’s a little confusing, but even without hyperactivity in the picture, it’s still called ADHD. See FAQs about ADHD.)

After Michael’s diagnosis, he was put on a trial of Concerta, a medication that often helps kids with ADHD focus and pay attention better. It did not go well. “He had really bad mood swings whenever his dose of medication was wearing off,” Lynn explains. “He was verbally and physically aggressive, and the teachers described him as zombie-like at school.” And Michael still wasn’t getting his work done. Yet school officials said he wasn’t “identifiable” for special education help because he wasn’t failing.

Now, at age 12, Michael continues to struggle. “He has a lot of anxiety about school assignments, most recently about a speech he had to make,” says Lynn. “One day he came home so frustrated that he slammed his backpack down and said, ‘I’m never going back to that school.’”

The Hughes have mostly struggled to find their own strategies for managing Michael’s ADHD. Apart from writing prescriptions — Michael also tried Adderall, and couldn’t seem to tolerate it, either — the doctors haven’t been much help.

Drugs, and little else
Michael’s story is typical. Medication is the only treatment many kids with ADHD ever get. Extra support may be offered at school. That’s it. Anecdotal reports suggest that many parents aren’t told about mental health treatments that could help their kids. Of the 10 parents interviewed for this article, only three received information about any treatments other than medication at the time of diagnosis.

That just doesn’t cut it. Research indicates rather conslusively that medication should not be the sole treatment from ADHD. Data from the largest controlled study of ADHD treatment, called the Multimodal Treatment Study of Children with ADHD (or MTA study for short) showed that over the long term, medication does not lead to better outcomes for children.

The MTA study created a buzz back in 1999, with its first wave of findings; after 14 months of treatment, parents and teachers reported greater symptom improvement in children treated with medication than for those who received behavioural treatments, which were a combination of parent training, a five-day-a-week summer treatment program for children, and behaviour management strategies for teachers and educational assistants in the classroom with the kids. “Initially, the 14-month data was interpreted by many people as evidence that medication alone was sufficient treatment for ADHD,” says William Pelham, professor of psychology at Florida International University and one of the co-investigators on this study. That early belief may have helped to entrench medication as a first-line ADHD treatment — plus, it’s much cheaper and more readily available than behavioural treatments, such as therapy programs for kids and specialized parenting courses.

However, eight years after the study ended, kids from the medication-only and combined medication-and-behavioural-treatment groups weren’t doing any better than the kids they’d been ahead at the 14-month point, specifically those who sought treatment on their own (usually including medication). In other words, none of the treatments showed long-term advantages. Further, more than half the children who’d been taking medication at the end of the original 14-month trial were no longer taking it. Pelham comments that other studies have found similarly high drop-out rates. “We’ve found that medication use peaks at fourth grade and declines steadily after that. Almost everybody stops taking medication by the end of high school,” he says.

No one knows exactly why this happens, but a few factors may contribute: unpleasant side effects; the fact that medication doesn’t work for about 20 percent of children; parents’ and society’s general discomfort about giving psychiatric medication to children; and, in some cases, the children’s own reticence about taking meds. “Teenagers are notorious for not wanting to take ADHD medication,” Pelham says.

His conclusion is that medication should never be the only treatment for ADHD. “In one of my studies,” he says, “we found that children who got behavioural treatment first, without medication, had better outcomes than those who were prescribed medication first.”

Now, this doesn’t mean medication has no place in ADHD treatment. On the contrary, drugs can help — especially in the short term. Kate and Marc Leblanc* of Prince George, BC, feel that medication helps keep their family out of crisis mode. Their son Justin, who was diagnosed with ADHD at age six, had been experiencing huge emotional breakdowns. “Crying doesn’t describe it adequately,” Kate says. “It was more like sobbing hysteria. We feel a lot of guilt about medicating our son, but at times it’s been the key to having any peace in our home.” The Leblancs managed to find some counselling and a social skills group for Justin at a children’s mental health agency in Prince George. Kate took a local course called Extreme Parenting designed to help families with behaviour issues, and though it was not specifically for ADHD she found it helpful, especially what she learned from the other parents. The meds, the counselling and the course combined “saved our family,” Kate reflects. “It’s still a big challenge, but before we connected with the children’s mental health agency our life was like a never-ending storm. Now we know we will get through it.”

*Names changed by request.

Learning to self-regulate
The other big implication from the MTA study is that treatment of any kind, on its own, isn’t likely to be the “answer” to ADHD.

Raising children with ADHD requires both short-term strategies that help you get through the day, and others that work over the long term to help children develop the self-awareness, self-control, thinking, planning and social skills they acquire less easily than other kids.

“Think of it as an ongoing experiment,” says Ann Clarkson, a former journalist who now coaches families dealing with ADHD. (She also has a son with the disorder, but without hyperactivity.) “You always need to be investigating what triggers their behaviour and figuring out how you can change the environment so their hyperactivity or distractibility won’t be triggered.” In some situations, it may help to keep handy a “bag of tricks” with snacks, toys, books and other items to pull out at key moments. “Which items you bring will depend on your child’s age and interests, but the bag of tricks should cover what some people call the ABCD: amuse, bribe, comfort and distract,” Clarkson says.

Maria Klassen,* a Hamilton mother of six, explains the strategies she uses to help her two children with ADHD. “At church we sit in the back in case one of the kids has to step out for a few minutes. The leisure choices we make reflect our kids’ need to run around a lot: We tend to go to conservation areas as opposed to small museums. We go camping for holidays.”

In a nutshell, kids with ADHD need what you might call better-than-average parenting: an adroit combination of compensating for children’s weaknesses, as Klassen does, but also recognizing and building their strengths. Clarkson says children with ADHD can often be highly creative, imaginative, fun, full of energy and often have passionate interests. “My son did very well in history because his passion for the subject enabled him to hyper-focus on it in a way that made his distractibility seem to disappear at times.”

Kids with ADHD also need enhanced positive discipline: more supervision, more reminders about how to behave in various situations, more external motivators like reward charts and more forgiveness.

As with any child, it’s important for parents dealing with ADHD to remember that they won’t see changes overnight. In his book Overcoming ADHD, the US child psychiatrist Stanley Greenspan talked about developing the core abilities that, over the long term, will help kids with ADHD learn to regulate their activity levels, impulses and attention — as well as connect their thoughts with their actions, and manage the input from their senses to allow them to stay calm and focused more of the time. Greenspan (who died earlier this year) noted that physical games can gradually build children’s ability to control their attention and activity levels. “Motor skills are fundamental to paying attention. You have to have control over your body to be able to focus on any activity,” he wrote. So, for example, parent and child take turns beating a drum with varying speed and intensity — slow, super fast, super slow, louder, as soft as possible. “This helps the child learn to regulate and modulate activity in all ways,” he wrote.

Greenspan also urged parents to speak with their children in ways that encourage creative and logical thinking. So if a child changes topics suddenly, gently challenge her to explain the link between her thoughts: “Hold on, I’m a little confused. You were talking about homework, then you started talking about a computer game. What’s the connection?”

Greenspan’s approach is just one of the many schools of ADHD management, as parents who go looking for ADHD books will quickly discover. Bill Elleker, who has co-owned Toronto’s Parentbooks for almost 25 years (parentbooks.ca) says two of his most consistent sellers in this realm are the AD/HD Parenting Handbook: Practical Advice for Parents from Parents, by Colleen Alexander-Roberts, and Taking Charge of ADHD, by Russell A. Barkley, who is arguably the world’s leading and most long-standing authority on the disorder.

Finally, though it can be tough, Clarkson reminds parents of children with ADHD to find ways to be positive. “They worry about their child’s weaknesses and behaviour problems and what the child’s life is going to be like,” she says. “But it’s really important to create and enjoy happy moments, and maintain a good relationship with your child.”

*Names changed by request.

Facts about ADHD

What is ADHD?
Attention Deficit Hyperactivity Disorder affects between three and 12 percent of school-aged children (depending on whose numbers you believe) — boys more often than girls.

The American Academy of Pediatrics refers to diagnosing ADHD in six- to 12-year-olds, though numerous parents of preschoolers say their children have been diagnosed younger than that.

ADHD is not a single disorder, and it isn’t the same for every child. The term describes the problems of children who have clusters of similar symptoms:
• Hyperactivity: fidgets, climbs or explores inappropriately; shows higher than normal levels of activity.
• Impulsivity: speaks or acts without thinking, interrupts frequently, cannot wait for turn.
• Inattention: easily distracted, has difficulty sustaining attention, makes a lot of careless mistakes, loses things.

Any child may display one or more of these symptoms on occasion, but to fit an ADHD diagnosis, doctors look for the symptoms to be causing significant impairment in the child’s behaviour, social life and schooling. They also check to see that problems occur in two or more settings (so, for example, not just at school).

Then what’s ADD?
It’s actually the same thing. The term ADD was commonly used in the 1980s; ADHD is now the official label, but many people still use ADD, possibly because it’s easier to say.

What causes ADHD?
There isn’t a clear answer. It’s widely agreed that genetics plays a role and in recent years many experts have concluded that when a child has ADHD, one of the parents or another close relative probably has it as well. Some see it as a deficit in executive function — the brain’s overall management system. Another good definition comes from the late American child psychiatrist Stanley Greenspan, who described it as the ability to take information in through the senses, process it and then use it in a sequence of actions to solve a problem, or do something you want or need to do.

Brain scan studies have detected certain differences in people with ADHD, including:
• Lower levels or less efficient use of dopamine and other neurotransmitters. These are chemicals that allow the brain’s nerves to “talk” to each other.
• Abnormalities in the brain’s prefrontal cortex — thought to be the “home” of executive function.
• Delayed maturation in certain areas of the brain, including part of the prefrontal cortex.

What medications are used to treat ADHD?
Most ADHD meds are stimulants, thought to relieve symptoms by increasing the amount of dopamine and/or norepinephrine (both neurotransmitters) in the brain. Here are some commonly prescribed meds:

• Ritalin – trade name for the stimulant methylphenidate
• Concerta and Biphentin – two different trade names for extended release methylphenidate
• Dexedrine – trade name for the stimulant dextroamphetamine sulfate
• Adderall XR – extended release drug containing a number of stimulants, chiefly Dextroamphetamine
• Strattera – keeps the neurotransmitter norepinephrine that the brain makes naturally, in circulation longer; this drug is not a stimulant and, in fact,was originally designed (but found ineffective) as an antidepressant

2 Comments