What You Need to Know About ADD/ADHD

IMG_0099.jpgMay is Mental Health Awareness month and Mother’s Day, so it seemed to me the best time to put down on paper the PSA that has been chugging through my brain for the last few months: a warning for other parents about the hidden side of ADD.

Almost twenty-one years ago, I gave birth to my first child. I had read everything I could find on what to expect. He would be pockmarked and misshapen from sitting in amniotic fluid for nine months before being shoved through the birth canal. I was prepared that he would not be as beautiful as a baby is supposed to be on television.

Somehow, though, he came out absolutely perfect. He was such a beautiful baby that all the nurses kept telling me how beautiful he was. I finally said to one of them,”Thank you, but it’s not necessary to say, I know you tell that to all the new mothers.” She laughed and replied, “We actually don’t. Your baby is just really beautiful. Even the floor pediatrician is in the nursery cooing over him, and he never fusses over the babies!”

He was a beautiful baby. Everything I could have wished for and more. He met all of his milestones early. His first phrase was his name followed by “Do self.” At eighteen-months-old, he could say the word convertible clearly enough for anyone to understand him and he knew what it meant. He always had a Matchbox car or a book in his hand. By two, he knew not only his primary colors, but gold and silver and copper. He was the light of our lives.

By the time he was four, I wondered why he loved Thomas the Train so much, but wouldn’t put the tracks together. I had to do that. He never wanted to do puzzles. They aren’t for every one, I told myself. He had one Richard Scarry puzzle that he particularly loved if I put it together. I would ask him “Where’s the pickle car?” or “Can you find the apple car?” His little face would light up when he finally found the one I had picked out, and he memorized where all of his favorites were.

By the time he had finished first grade; though, I knew something was wrong. He wasn’t reading very well. He hated asking for help. He hadn’t been able to do his map homework, despite the fact that we’d been looking at globes and maps since he was a toddler because his father was in the Marine Corps Reserves. I knew in the primordial forest of my heart that something was wrong. His school told me that he seemed fine to them, but that I could have him tested if I felt it was necessary.

This began a fifteen year journey to an ADD diagnosis that has rocked my family to it’s very core. I had my son tested. And tested. And tested. No one could explain to me why my child, who was remarkable in so many ways, who qualified for gifted programs on his standardized testing, was struggling in school with increasing frustration. His first test, done by our school district, told me there was nothing wrong, despite fourteen point swings in his visual nonverbal skills. His second test told me he had Auditory Processing Disorder and was just shy of a disability in Executive Functioning. In his third test, the Head of Pediatric Neuropsychology at a local hospital asked me “What’s your problem? Your kid’s achieving at grade level.” I was stunned. According to my son’s IQ, he should have been achieving above grade level without even trying. Instead, he was struggling in third grade every day, feeling ashamed because he only read picture books while everyone else was reading novels. I was told it was a slight developmental delay and dismissed. I took the test to my son’s teacher and asked her if it was me. Was I crazy? Was I the first-time mom who couldn’t stand it that her kid wasn’t perfect?”

“No,” she replied, “something is wrong. If it were earlier in the year, I might believe this, but he shouldn’t be struggling the way he is.”

I no longer knew where to turn to get answers. I read books, talked to people, asked questions. But no one seemed to be able to help my child. They loved him at school. He was well behaved and smart and funny. At home, he became increasingly frustrated and difficult. He lied. We thought it was a moral issue. We didn’t know that lying is an ADD coping skill. He argued. Relentlessly. He could never understand why he was being punished for anything. It wasn’t that we didn’t punish him, it was that the punishment had no impact because it made no sense to him.

Between the failure of the medical community to diagnose him and the failure of his school to provide proper accommodations because I didn’t understand what he was entitled to and trusted them to do what they could, my child struggled until he imploded. In sixth grade, he became the class clown. In seventh grade, he completely crashed on his standardized testing. His scores plummeted from the high gifted range to barely registering. I was getting daily emails from teachers because he couldn’t turn in his finished homework. It would get lost in his locker. He lost three $120 required calculators. He routinely lost his books, notebooks, and clothes. I would have to go into his school at the end of the day and search for his things. He would never remember to bring home the book he needed. Or he hadn’t written down the homework. He was angry and disengaged. He told me he would care about school when he was in high school and it wasn’t stupid anymore. He grew to hate me because I was always looking for the answers he didn’t believe in.

We had him tested again. There were tears in my eyes when I begged them to believe me that something was horribly wrong. I told them that if they didn’t help me, I was going to lose him. He was becoming increasingly at risk for substance use. In less than six months, my child had gone from repeatedly telling an older student who solicited him for drugs online that he wasn’t interested to trying to experiment. I was terrified of being dismissed again. I knew that I was fighting for my child’s soul.

He was diagnosed with a profound global executive functioning impairment, but they told me that he functioned highly in attention. He was also diagnosed with depression from not being properly accommodated. I thought I finally had my answer. Everything they told me made sense to me. It fit him, and I really believed that the accommodations they recommended would make a difference. I had hope.

The promise I had never materialized; however, because my son still wasn’t properly diagnosed. We were a very, very long way from getting him the help he needed and deserved.

It took until this year, his twentieth, for us to get him the help he should have had fifteen years ago. It took me stitching the pieces together and refusing to accept another failed diagnosis in his nineteenth year.  The psychologist told me that he was presenting as extremely ADHD at the assessment. I was surprised, because they had told me before that he functioned highly in attention. I was expecting an ADHD diagnosis, but then my son passed the Conners Continuous Performance Test so we got a different diagnosis. A diagnosis that didn’t fit my son in any real way, but made sense to the psychologist because of the defiant behaviors my son has used as a coping mechanism for so long.

It also took my son finally having some developmental growth to self reflect enough that he gave me one of the pieces when he told me he thought he might be autistic. Autism had never occurred to me, but I asked him why he thought that and, when he explained, I remembered the tortuous way he couldn’t stand to have water on his face at bath time when he was little. They way he compulsively lined up his cars over and over again, and how he now played video games for hours. He told me things I had never seen in him-how he struggled to look people in the eye and how socially awkward he felt. This, from my son who had been voted captain of his ninth grade hockey team, who always had friends, who always had a girlfriend. He had hidden what he saw as the darkest parts of him so well that even we couldn’t see them.

We had him assessed. He is not autistic, but he has five of the ten criteria they use to diagnose autism. Then I found out that many people with ADD/ADHD have co-occurring symptoms of autism but are not autistic.

I started asking any adult who told me they were ADD/ADHD what it was like for them. Almost invariably, they described it as having twenty televisions in your head and you can’t focus on the one you need to focus on, like standing in front of the television wall at the electronics store and being unable to look at just one long enough to know what is going on.

I asked my son if he ever felt this way. He looked at me with a confused look on his face. “All the time,” he said. “Why?”

“Have you always felt this way?”
“My whole life,” he replied.

“You have ADD,” I told him.

Dealing with mental health and learning/behavioral issues is complicated. They co-occur (called comorbidity in psychological jargon), which you can learn more about here ). They often trigger depression and anxiety. Symptoms overlap. They change and morph.

But the signs that my son was ADD, while hidden, were always there. His inability to sleep. His lying. His frustration, depression, and profound executive functioning problems. His constant stomach problems that had no source we could discover.

But I still needed the diagnosis to get him treated. He could pass a Conners. Every psychologist I had taken him to had missed this. Over and over. When I asked the psychologist he sees now why no one had ever asked him how many televisions my kid had in his head, he answered with “well, that’s not empirical.”

But asking a patient “On a scale of one to ten, how bad is your pain?” is empirical.

Psychologists love to be empirical. But the vast majority won’t do a SPECT scan to see what is happening in a patient’s brain biologically. They want to rely on “emotions” and “symptoms.” The problem is that, with psychological conditions, symptoms routinely overlap and doctors are left taking an educated guess at what is wrong, treating it, and hoping they were right in the first place. For more on why this is disastrous and has to change, read psychiatrist, Dr. Daniel Amen’s, information on why he uses SPECT scans here. As Dr. Amen says, the brain is the only organ we will treat without imaging it first, and it makes no sense. His own struggle to get help for his nephew is proof that even those who are educated and connected have to fight through a broken system. In fact, it’s dangerous. A SPECT scan could have revealed my son’s ADD years ago, saving our family untold heartache and my son absolute agony.

How we treat mental illness and learning and behavioral disabilities has to change. But until it does, here are the main things you need to know if you suspect that you or a loved one may have ADD/ADHD:

  1. You can pass a neurospychology assessment and still have ADD. If the results don’t make sense to you, seek out a medical doctor in a program called ADD through the Lifespan. The programs are sometimes called ADHD Across the Lifespan or other minor variants, but you can find the main idea here. Finding an ADD specialist, who could diagnose my son with other tests and who was familiar with the co-occurring problems of ADD, has made a world of difference already, and we are still in the early stages of proper treatment.
  2. There are different kinds of ADD, not just “ADD” and “ADHD.” Understood.org, which helps parents of children with learning and/or behavioral disabilities, lists three types of ADHD, which you can learn more about here. Dr. Amen has identified what he terms seven types of ADD based on SPECT scanning, see here. In general, I suggest that this is still a developing area of study but the important piece of information is that ADD/ADHD is not a one size fits all based on whether you are hyperactive or not. There are gradations in each category.
  3. The systems are not set up to help you as a parent. They are set up to make you fail. I was as engaged and willing to accept that there was something wrong with my child as any parent could have been. I didn’t need an expert to tell me there was something wrong with a child who had asked me at three why a plane’s nose was shaped the way it was and how the telephone wire knew to take his voice to his grandmother’s house still reading picture books in third grade. I was constantly seeking help: from the medical community, the psychological community, his school community. And it’s not that no one helped me. Some did and some didn’t. But those who did too often didn’t know themselves. To find the ADD Across the Lifespan doctor I recently found, I was at a dead end. I suppose I should have been googling how to treat ADD, but I grew up in a time where you went to the experts, not google. I only found this program because my son’s well meaning psychologist had suggested another neurospsychologist who, when I spoke to her, I knew was the wrong person to understand. So then I called my pediatrician, in tears. Because we have a long history together, she knew that I was not an overreacting mother. But she didn’t know what to do either. She put in a call to a psychiatrist friend and discovered the Across the Lifespan program. She recommended one at our local psychiatric hospital, but when I went to look for it, I found the doctor I now take my son to, hiding in plain sight.
  4. ADD/ADHD puts people at a significantly higher risk for substance abuse, often starting with teens who, improperly treated, try to self medicate this debilitating condition and/or associated conditions such as depression and anxiety. People with ADD have significantly higher, sometimes more than double, the chance of abusing marijuana, alcohol, nicotine, and other drugs, as discussed here. (But if you want to quibble with this site, you will find that the medical community agrees there is a seriously increased risk for addiction and abuse by those with ADD/ADHD). The good news is that, when ADD/ADHD are properly treated, this risk is reduced and there is less risk for those who are properly medicated to start with, as discussed here.
  5. It is never too late to get help as long as a person is willing to address their condition. That is the beauty of the ADD/ADHD Across the Lifespan treatment. My son has different issues coming into treatment as a young adult instead of when he should have entered into treatment years ago. He has lost more than I can bear to think about, but thanks to treatment, he has a new path that is helping him to actually work toward his goals in life.
  6. The smarter a kid is, the easier it is for them to hide their struggles. I knew my child was gifted. I also knew my child was learning disabled. But even with all of that, I didn’t think he was ADD or ADHD. Not because he wasn’t hyperactive. I knew there was a difference. But because he could over-focus, I never saw what was at the root of his problems. I understood the executive functioning problems as what I was told they were-separate and distinct from ADD or ADHD. The doctors were wrong, but I was, too. Ask your child how he or she feels in their head. Have them explain it to you. But don’t assume they are telling you the truth because if they think you think they might be crazy, then they will tell you what you want to hear, not what you need to hear. Ask them about TVs. Ask and ask and ask.
  7. Don’t discount those things you think are quirks. Not being able to stand water on his face seemed like just a weird aberration in an otherwise well adjusted kid from a sensory standpoint. He hid all the rest of his autism symptoms, in fact, he appeared to be the opposite. Now my heart aches for him when I see him write things on his intake assessments like “I just don’t feel like I am part of the world. I feel separate from it. I don’t understand how things work.”
  8. ADD/ADHD kids are usually difficult kids. The frustration is unimaginable. They are often diagnosed with Oppositional Defiant Disorder. Treating the ADD/ADHD can resolve this oppositional behavior for many kids, as well as lying and other avoidance behaviors. As a parent, or even someone with the disorder yourself, understand the source of “bad” behavior. What we think of as bad is really just poor executive judgment or the inability to put long term goals over short term desires that most of us have the ability to do. Biology is what often separates us into the good and bad columns, not some inner moral turpitude or the values parents try to instill or how well they discipline. We did everything you are supposed to do to make your child responsible. My son wasn’t capable of understanding without intervention, and I sought intervention, and every place I sought it failed until now that my son is getting properly treated. He is just starting to recognize this behavior in himself. It is a nascent understanding, but I’ll take it for now.

These are the lessons I have learned the hard way. Beyond hard. To explain the heartache of dealing with this, the things we have lost along the way, the anger and resentment that I harbor for those who didn’t care enough to even try, is beyond description, at least in this post. So I am giving this to you in the hope that it helps you, that it enables you to find help sooner, that you or your loved one will not have to lose the way we did, will not have to be broken down to your core before you get help for ADD/ADHD.

Please let me know if this post helps you or someone you love. Current statistics put this disorder at about 8% of the population, but I believe it is much higher and often goes undiagnosed. But with enough persistence, it is possible to beat the system. My son is living proof.