Don’t Think ADHD is Real? Just Say It
The Mother’s Handbook post today, Placebos, Drugs and ADHD, is about how her opinion on Attention Deficit Hyperactivity Disorder has changed over the years with the diagnosis of her own child.
As a person with ADHD, I figured it was my duty to comment. And since I would be speaking of my own experiences, in typical ADHD fashion, I decided I could get away with long winded sentences and being grammatically incorrect. Just as I was about to hit “post comment,” I hit another key by mistake. My “tome-ment” was gone.
So now, instead of writing about my dog or my children, I will give a relatively spiffed up version of what I was going to say on her blog.
I was diagnosed in my forties a little over two years ago with ADD via a screening test, which was followed up with brain mapping by qEEG. After years of struggling with pretty much everything more than I should, getting the right diagnosis was everything. I can’t emphasize how important this is.
What most people don’t understand (and I didn’t until my diagnosis) is that you don’t have to be a hyperactive or a boy or a behavior problem to have ADHD. No two ADHD patients are exactly alike. I knew within an hour of taking my first stimulant that I had found the missing piece to my puzzle.
For the record I didn’t just have more energy or feel more focused and alert. It was a watershed, “oh, this is what normal feels like” moment. I don’t believe this would have been enough for diagnosis by itself, but finally, after months of talking and testing, in an instant I was convinced.
In general, the disorder manifests differently in girls. I, for instance, was never a behavior problem and wasn’t overtly hyperactive. I couldn’t sit through a movie, or long class or test or anything that wasn’t intensely interesting to me. I needed a great deal of time to myself. This was usually attributed by both myself and others as laziness and shyness – trust me, not nice labels to grow up with. I was a day dreamer who lacked motivation. I hated math after around the 5th grade.
Somewhat surprising to most people is that I’ve always been able to hyperfocus like crazy when the subject was right. If something had my interest – I was the person you would want on your team. This is how some people with ADHD can often perform at high levels at school and work. The inconsistencies aren’t really inconsistent at all.
The key is that I never could choose what held my attention. This is my way of saying the cliche, “Ooh, look, I see something shiny!”
I have come to believe that a big part of what is regarded as the ADHD problem is that the disorder is both over-diagnosed (because stimulants make most people “feel” or “behave better,” at least at first) and under-diagnosed (no two patients have everything in common– there are at least 6 distinct types, with infinite variations). The result is there are way too many children/people on stimulants who haven’t necessarily found their personal missing puzzle piece, while at the same time there are too many who aren’t getting the help they need.
The undiagnosed may be getting by, but not living up to today’s definition of “potential”… perhaps in cave people days we served a purpose? But anyone who knows what they are talking about on the subject of ADHD, these days would never say the disorder is anything but a serious handicap.
I also think ADHD, Attention Deficit Hyperactivity Disorder, is poorly named. It is inaccurate and for people who, where in general the whole point is they can’t be pigeonholed, is just another ill fitting pigeonhole.
In my wake, my daughter was also diagnosed. Most family practice doctors never would have guessed it. Using common screening practices such as asking her how she’s doing in school, would have never revealed so much as a hint of it. For us anyway, these kind of initial screening tests were practically useless. She underwent the same tests as I did for accurate diagnosis – unfortunately, the qeeg isn’t typically covered by insurance companies. But I seriously thank God for her diagnosis everyday.
We both do weekly neurofeedback with a specialist, and take stimulant medication. I’ve been in therapy and coaching, and we have both made major lifestyle changes. My hope is that someday we both will be able to stop relying on the medication to at least some degree. Stimulants, especially after initial success with them, are still no magic bullet. In regards to children, this is where a lot of parents, teachers and doctors go wrong.
I haven’t even responded to the article and study that inspired The Mother’s post. Something about the placebo effect in CARETAKERS from stimulant medication? Us people with ADHD are passionate as hell about stuff like that. Frankly, the concept feels a bit like a personal insult, but after thinking about it, I say so what? I’m sure the placebo effect does exist in various patient/caregiving dynamics.
But I do wonder why valuable resources are being spent studying this. Do we want to cross a line and make it medically acceptable for doctors to prescribe medication based on the potential for a placebo effect? Does someone out there not believe ADHD is real?
And to think I started out today planning to do all the laundry. Lily the Labradoodle watched me chip off a bit of several mountains of dirty clothes. As I moved clothes from washer to dryer to folding, I swear she was looking at me as if I was crazy. Maybe I am to her. Maybe she’s wondering why us crazy humans bother wearing clothes. She walks around naked all the time.
Here is a good introduction to neurofeedback and qeeg for anyone who thinks medication is the only potential treatment for adhd or wants to know more. Don’t expect every doctor you know to go, “oh, great idea! I’m sure it will work.” They won’t.
Where do I begin to respond?
1) there is an enormous potential for this particular study to be misused, as I discussed on my own blog. The “naturalist” group will be all over this. Add to that the well known fact that these stimulant medications affect school performance even in normal kids, and the outcry will be huge.
Just as in any disorder for which objective measurements are difficult to obtain (read: psychiatric disorders), the ADHD spectrum IS overdiagnosed and, potentially, overtreated. But that does not mean that those who really can benefit from these treatments shouldn’t get them.
And the fact that 80% of normal folks DO respond sort of belies the whole placebo effect thing to begin with, doesn’t it?
2) New therapies come up regularly. They aren’t always drugs, although drugs are our first line of attack, until the other stuff gets as much data behind it.
Here’s the problem with alternative therapies, and why they take so long to get accepted: the people who tend to use them first are not the folks who bother with little things like the scientific method. While drugs must undergo rigorous testing, non-drug methods only require someone to hang out a shingle.
This does not mean that these therapies are inherently flawed. It means the methods that are used to study them, initially, generally are. It takes a certain amount of success to get mainstream research interested, and then do the real studies. That takes time.
I am always skeptical of so-called “alternative therapies” when they are first starting out, and rightly so. But things like feedback therapy are WELL DOCUMENTED, now, so if your doctor is skeptical, push it, and if he still doesn’t play along, switch doctors.
I found my own come-uppance on this one. After four years of intractable migraines, and worse and worse drugs, I read in the alternative medicine literature that a huge proportion of these are due to TMJ. A year later, after undergoing TMJ therapy, I was cured, and haven’t had a migraine since. That was 10 years ago–this is JUST starting to creep into the standard medical literature.
3) I do think that we should, perhaps, investigate the idea of the placebo effect as an actual “medication.” It works. It works very well, under the right circumstances. The problem is, if you tell the patient it’s a placebo, IT DOESN’T work.
The more expensive the drug is, the newer the drug is, and the more exotic the name, the more effective the placebo effect.
In this age of spiraling medical costs, is it so bad to consider the idea of a trial of placebo? No, doctors aren’t supposed to lie to their patients. No, the use of placebos that aren’t labeled as such is, as of now, clearly unethical.
But is it WRONG?
4) Clearly, this “disease”, ADHD as it is currently labeled, is a spectrum, as are most disorders–something docs understand, but patients rarely do. Pigeon-holing is effective for studies but not necessarily the best for patients. The best docs work with this knowledge, and adapt as the patient requires.
The brain is still largely a “black box”. There is so much we don’t understand. We will, eventually, but it’s going to take time.
Fabulous, fabulous response. I’m pretty brain dead after all this thinking today… but truly enjoy discussing this
Margo, I pretty much said the same thing over at The Mother’s blog. Your mention of hyperfocusing and not so much hyperactivity resonated with me. Because with me, it’s almost always hyper-focusing. Bath tubs over-flowing, classes missed, showers that went on forever . . . because I was so engrossed in whatever I was doing that I completely lost track of time. Occasionally, conversations with friends that were silently hijacked by my random thoughts (did I turn off the coffee pot? do my azaleas need more acid? did I file that paper with the court on time? blah blah) happened, too.
Biofeedback and information about it go a long way in helping to manage it without medication. But when folks require medication, by all means they should take it.
I come down on the side with you and The Mother, though I do lament the over-diagnosing in children that seems awfully prevalent these days.
I’ve got quite a few ADD traits, myself. Was never a behavior problem (or never caught, heh heh heh) and did well in school. But I swing between under focusing and over focusing, fortunately the over focusing helped me get as far as I got educationally. Have never tried stimulants but seriously want to taste test to see if I get that “aha!” moment of mental quiet.
My husband and son are both diagnosed with ADD. Only my son is on medication, and we thought long and hard about it before we started him with it. I don’t believe medication is always the answer, but for him it has meant everything. He’s also very smart, and never really struggled with schoolwork, however his impulsivity caused big social problems for him, which the medication has alleviated.
I think ADD is overdiagnosed as well, but I get upset with those out there (not in this discussion) that claim it doesn’t exist, or that it’s the result of a lack of discipline.
A great post, and an interesting discussion going on here!
I’m almost totally ignorant of ADHD and now feel somewhat informed, thanks to your great post Margo!
Welcome to the world of better living through chemistry. All I can add to this is that I’ve seen people habituate to the medications and increase dosages, and there’s just so far you can go with that, and without them get very, very tired, which can get very dysfunctional. I’m sure you’re team will keep an eye on you. Great post.
I had a feeling I had this but after reading your post, I know I do. That part about focusing on things you’re interested in, spot on.
Amazing how many people think ADHD is made-up or just a “crutch” that those of us who have it use to get away with laziness, lateness or inability to complete tasks like “normal” people. Thanks for this post!
lawyer mom, if anyone could see first hand the difference that all treatment together, but most immediately the medication, has made in my adolescent daughter’s life (and knowing how it feels inside my head to have been helped), I think more of the children and adults who do have “it”, whatever “it” is, would get help. At first, I don’t know if I would have taken treatment as seriously, if it was just me going through it… it’s like my daughter and I provide ongoing “proof” to each other. It’s been interesting for me to observe how I need less outside proof as I continue to get better.
phd yogurtry, the quiet in my head was stunning to me. I still often wake up in the morning with my eyes closed and just enjoy the blackness – I’d never known that before.
Vic, true, there is always someone out there, I call them constitutional type A’s, who can’t comprehend the concept of ADHD. I have several of them in my life whom I love very much, but just between you and me (I’ll whisper) – I think they feel admitting the existence of ADHD would take away their claim on the moral high ground.
Jane, you are so welcome. I’ve been building up to talking more about this for a while, and appreciate your reading and open mindedness!
therapydoc, oh my, I could talk your head off right now. If meds were the only treatment we were using, I can see where that would be terribly concerning. It feels strange enough to be this enthusiastic about a controlled substance. Habituating? I hope I can see that before it happens!
Jessica, that’s a big part of the reason, I knew sooner or later I’d have to start writing more directly about it here. If you think you have it, you should absolutely read more and get recommendations for professionals who specialize in ADHD. T Even if it turns out you just kinda have some of the symptoms, it’s incredibly helpful to know what’s up. The book everybody seemed to tell me to start with was Driven to Distraction.And I do think there is something about many who have it that’s related to being creative, funny and able to look at things differently
Heather, I went through a years of this with allergies and asthma, as far as people who couldn’t relate, thinking it was “all in my head.” It turns out they may have been right to some degree – my asthma and allergies have improved dramatically since the ADHD diagnosis. But it’s not like we have any control over this. I spent almost all my energy trying anyway until diagnosis. Who except a sadist would choose this? And normal people – whatever that is – are boring as all get out.
Love the bit about your dog.
I don’t know a ton about ADHD even though I should. I’ve encountered plenty of people with the condition & it is most definitely real.
I know that for lots of us without the condition the symptoms are nearly mimicked by the multitasking lifestyle of today. Especially by spending a lot of time on the computer. I wonder if multitasking and spending a lot of time on the computer can help ADHD sufferers of make things worse for them? Like with Ritalin where most people would feel a speed effect, while those with ADHD would be made to feel calmer.
I think that the reason many people became dubious about the validity of ADHD is that it is a diagnosis that is given out in a sort of blanket and often not clinically accurate way. I admit I used to be dubious that ADHD was real ( don’t hate me;-) until someone I loved was diagnosed and went on medication for it and it drastically changed his life for the better. He was diagnosed in his mid 30′s and he wishes that he had been diagnosed much earlier because if he had school, college and work would have been very different for him. Your daughter is lucky to be diagnosed so early and to have a mother who is so incredibly proactive.
I also want to thank you for your very lovely comment on my blog and tell you that my Lily the Westie sends love to your Lily the Laberdoodle. Aren’t Lilies the best?;-)
Margo… this was very informative, I haven’t had much exposure to this issue but have friends who have.
Love this… and thanks for sharing. It’s such a controversial issue right now, I for one am glad to know more about it… and I’m sure a lot of other people out there dealing with it first hand will be, too.
I think there is still so much to learn about this. Perhaps we haven’t touched the tip of the iceberg with it. The brain is such a mystery.
I do think that it has become a much too large umbrella and people use it as an easy label.
Heather, that is a very interesting observation. I think the modern, fast paced, multi-tasking, high tech lives we lead these days do not just mimic the symptoms, but perhaps bring them out, because the demands are so high. Multi-tasking? I don’t do that.
La Belette Rouge, Yes, Lillies are the best! And we all have enough things going on without intimately understanding every human condition… so of course I don’t hate you – I actually admire you for having an open mind and being a good friend to this person in your life who was diagnosed. I love westies! I grew up with a cairn terrier (a Toto) – they are somewhat similar.
Fiona, thank you so much for reading! xxx ooo
Lilu, yes, there is a lot about it out there these days. It’s another one of those little reminders life’s always firing at me, to not be judgy – we never know what’s going on inside another person – and even though we, as people, are much alike, we’re all different
blueviolet, I definitely feel as if this brain business, which is being so talked about lately, is the tip of the iceberg. I just hope that doesn’t make me the Titanic
Hi Margo,
I know I’m a little late on the commenting but I wanted to chime in. I really appreciate what you said about ADHD being over and under diagnosed, that is an excellent point. I am also inspired by how strongly you feel on the topic. Its great that you are sharing your experiences, I think that helps everyone understand ADHD a little bit better.
.-= Marcu Andrews´s last blog ..Mom’s Squash Soup (Fall is almost here) =-.
Ah ha…a fellow woman with late diagnosis of ADHD. The diagnosis rocked my world. explaining so many of my “little quirks”, a part of me believed I had missed 1/2 of my life the other parts wrapped themselves in new beginnings. No, medication is no the magic bullet; but it settles my mind so I can learn new ways to live my life without struggle and chaos.
I too, used to get annoyed with people who are flip with the diagnosis of ADHD. My coach is quick to point out without ADHD there would be no electricity, theory of relativity and on and on. I embrace myself today, all of me. The ones who say it is not real simply have not lived the experience.
Thank you for your article