ADHD Diagnosis: How Important Is The Diagnosis…Really?
April 8, 2010 
26 Comments
Earlier this week I met with a colleague to discuss our views on ADHD and how we can really help make a difference in education, training, and support. It was a really great conversation…very stimulating to the point that I was furiously taking notes the entire time.
But we got stuck… My colleague asked me “At what point do you educate people on the diagnosis and the importance of HAVING the diagnosis?”
“……………………………” Suddenly things got very quiet.
Most of you know by now how I feel about a diagnosis… I won’t mix words here…but for me it’s sorta “nice to know” information. At least that’s how I will start a conversation or how I REALLY feel about the diagnosis (and most diagnoses in general).
But this comment or difference in approach split the conversation. We quickly kept dancing around the issue.
How important is it to have that diagnosis? I mean…to really have it?!?!?!
We both agreed that there are two very distinct groups of people (more I’m sure in reality)…
- People who have life changing “a-ha” moment when they find clarity from the diagnosis.
- People who really don’t get all that excited or care… They just keep moving on with life.
Now these are general characterizations for a reason… I honestly know that deep down inside there are many different reactions to getting a diagnosis, or even the suggestion of an ADHD diagnosis.
But the question today is really about…. How important is to have that diagnosis versus understanding your differences and what that really means?
Can you have one without the other?
This is a very loaded question for me. At the end of the day, I don’t much care what the diagnosis is… At least if we are talking about ADHD. I am more interested in helping people understand their differences and HOW those differences create challenges than I am nit-picking whether it’s ADHD or not.
BUT!!!! At the same time…it is clearly important to me because otherwise I wouldn’t insist that people see specialists to get their diagnosis.
So WHY then is this so difficult?
Well…we know how complex ADHD is to diagnose properly. There are co-morbid conditions that complicate a diagnosis, and there are many other factors that influence our behavior and how we are affected by life.
Plus there is the difference I experienced in my own childhood…. Being identified as “gifted and talented” and how my differences were encouraged and NOT seen as weaknesses. Just from that experience alone I am convinced that differences are just that…. DIFFERENCES!!!! They are NOT good or bad until you use them… And how you decide to use them…
PLUS…there is just so much more to consider. We need to look at the underlying cause of the behavior. Is it really ADHD or is it the child?
And I think that’s where we got stuck. Because I always encourage people to see a specialist to get diagnosed. I think it’s critically important that we have an accurate diagnosis, or at least a clear picture. BUT…I still want to know…
How important is that you have the diagnosis? Is it more or less important to have the diagnosis versus understanding your individual, and unique challenges?
Let me know. Clearly both are important to me…BUT I am a little stuck and am leaning more towards the side of being aware of your differences more than anything else.
The one area where diagnosis has been important to my son has been that it has allowed him to get more help at school. I find there are still people with “an attitude” about ADHD–as in they don’t believe it exists. Even if they believe that, a diagnosis sort of forces them (legally, even) to acknowledge that my son needs and deserves some accommodations.
Other than that, the diagnosis hasn’t meant much to me. My own “aha” moment came when a therapist first suggested I might have ADHD. I’d absolutely NEVER considered it before. It took me 10 more years to get the diagnosis. By then, it was not a surprise!
Diagnosis: When I worked on my doctorate in Psychology, everything was about the “test”. The “test” was looked upon almost like “God” and I thought. Impossible. People are way too complex to be put into a “box”; however, if you have a grouping of symptoms that usually walk together and that group is referred to as X, it’s a really good start, especially when you have a person walking around who is acting out and doesn’t understand that their behavior is affecting not just their life, but everyone’s around them. I have such a person in my family circle who, for years, we have tried to get diagnosed who thinks everyone else is the problem and not her. And she’s gotten to the point where she’s dangerous and still she doesn’t believe she has a problem. Denial is part of the illness. I agree that you need to assess what is happening that is considered out of balance and then work on creating a balance. And both the diagnosis and the treatment are going to differ culturally, regionally and according to customs around you. A person may be ADHD but does it matter if you’re out on a ranch milking cows as opposed to running a law office where you’re in a paper mill constantly and can’t get your briefs together? Another thing, one cannot get stuck on the title because even the DSM Manual is constantly changing as either (1) people get smarter and/or redefine what they thought A was in the first place and is now A+ and A-, the different paths. And, oh, by the way we learned this since… I constantly see the old school and the new school crossing paths in competency hearings. And if a person is stuck in a box, especially as a “treater”, I’d ask what continuing training have you received and what methods are you using for analysis?
Rory,
What strikes me is that you focus on the (experience, point of view of the) “patient”. For me, as an (ex) partner, things also changed tremendously when my wife was diagnosed ADHD (everything sorta fell into place). So don’t forget that the person’s social network also benefits from the diagnosis, even if nothing else changes.
Marten
the Netherlands
Although understanding the challenges and coming to terms with the condition and its implications it vital, getting the diagnosis is what opens the doors for the ADHD’er to access the tools, support and assistance required to understand and meet the challenges. Without “official status” the person may be perceived to be disrespectful, lazy, careless or worse. Unfortunately, even with the diagnosis, there are still those who maintain that ADHD is a “non-condition” that allows teachers, parents and the patient themselves the perfect excuse for unacceptable behaviour and attitudes.
Hi Rory,
I don’t think this is a debate per se, unless one or more people are trying to influence others into their decision. Anyway, if someone does indeed have ADHD then it helps to understand it as much as possible and of course get proper treatment. I always knew I was diff.. But why? What can I do to improve? Who should I see about it? Etc… Without a proper diagnosis who’s to really say how, why or what? Some people can make it by doing just fine in their situation and that’s okay, but that’s rare cases. lol – this is from my phone so will leave it there! Great topic Rory!
Bryan
Rory, I can see why you’re stuck. In addition to being “gifted and talented”, you appear to have uncomplicated AD/HD. In your personal situation, diagnosis is straight forward and not difficult. However, for those of us who have AD/HD, and a handful of other diagnoses, the diagnostic process is very important. For example, my mother, my son, and I all have AD/HD, but they don’t have working memory problems like I do. She almost completed her degree in biology and was encouraged to become a doctor or architech, he’s completing his third year of chemical engineering, while I, on the other hand, have less than a year of college education and barely get by doing entry level work in an office environment. It’s frustrating…
Coming from being a mental health professional point, I do not believe a dx is the end all…for anything. But, in terms of patient education, correct medication (if warranted) and to work with others who go ONLY by a dx (eg psych md’s) it’s necessary. A dx is not a label in my book, it’s simply a means to understanding better why a person is who they are. Not having been dx’d until age 51 it certainly opened a door for me and I sure wish I had known sooner. I think for parents of ADD kids it allows us to get more understanding of our child and helps us to try to work with educators (as much as that is possible!) more effectively. But that’s a whole other blog!
Missy
It’s not a one size fits all issue. Each person is different and each person’s ADHD (or strengths and weakness are different)too. There are some environments where people with ADHD thrive and a diagnosis may not be needed. Then there are environments where people with ADHD struggle and are miserable and the diagnosis is life changing.
I think each person really needs to do what is right for him or her and respect other people’s choices too.
I aggre with Missy, in my case my daughter was dx with ADHD and it explained a lot (to me anyways)about the way she was not focusing in sports and school and other things.
It help my wife and I to better understand what was going on and It gave us a starting point to help my daughter.
Great job Rory!!!!!
For me it’s a double-edged sword. My son gets extra help in class because of it, but when he’s not cooperating in class the teachers say it is his ADHD and he should be on drugs.
I wish teachers were more educated about ADHD. If they were they’d understand how to better help our children grow and learn, instead of conform and stifle.
Giving symptoms a diagnosis like ADHD helps educate people. As a parent, it helps you move from the “why is he that way” to “how can I make his life function better.” A diagnosis helps you realize he won’t just snap out of it but he will need to use specific tools or strategies to help overcome the struggles. Would people come to your website for help if it was just called “The Truth About Being Different”?
I don’t have a diagnosis, and since I have a diagnosed mood disorder, it is unlikely that what I see as signs of ADD will be diagnosed and treated as such. Nevertheless, the information on the web and in books has immensely helpful to me in learning how to adapt to the ADD-like things (fluctuating focus and concentration, very creative, too many thoughts to keep track of, impulsivity, etc.) that sometimes cause difficulties for me. Yes, being creative can cause difficulties when I don’t want to go through channels at work because I think I have a “better” way …
My mood disorder could be behind many of these, but books on depression and bipolar don’t address them directly. ADD books and websites do.
My son has ADHD but the diagnosis was no surprise to me. However, the diagnosis was relevant for the school officials (or was supposed to be) so he could be better understood rather than just seen as a bad/challenging child. In the long run the school didn’t act quickly enough for me so I, being an educator, have been teaching my son from home for the last year via virtual public school. What I didn’t realize before all of this is exactly how smart my son truly is. So, is the diagnosis a label for those with little understanding to condemn because “ADHD is not a real condition, just an excuse” or is the diagnosis needed for those who have ADHD or care for a family member with ADHD to gain more understanding/help? I think a little of both. I still believe a diagnosis, for the person with ADHD, is most significant in truly knowing the differences are not bad and are managable.
I think a diagnosis is imperative. My son was diagnosed about 3 years ago – I already knew and was parenting him the way he needed – but for school and his dad and other relatives it made a huge difference in their willingness to work with his differences. I’ve never been diagnosed – but know I also have ADHD – but I’m thrilled with my differences and have a career that works for me. As a school psychologist – again – it may not change what the special ed people or any others who “get it” are doing – but for all the rest it is invaluable.
Clear as mud. This is what I’ve been trying to explain to my business coach. When talking about whether or not a diagnosis is of utmost importance to coaching a person with ADHD my response has been: “It’s complicated” and “It depends”. It is totally situational and dependent on what the person or family is looking to get out of the diagnosis. From a coaching perspective its important to treat the individual for the who he/she is….talents, weaknesses, strengths etc. Having said that there are certainly times when a diagnosis is imperative. Maybe things just don’t make sense..something keeps getting in the way. A co-existing condition or a hidden learning disability can cause major complications if unknown. Soooo…….clear as mud?
Hi Rory-
Probably the most important reason to have a diagnosis is to be sure that you are treating the correct thing. There are about 50 other conditions that present like ADHD. Some of these are dangerous if left untreated. Some of these are easily curable.
When a parent walks into the doctor’s office and walks out five minutes later with a prescription, there is a very reasonable possibility that the child is not getting the treatment he needs.
Some people think that we should just treat and see what happens. This is a big mistake. Many times the medications do improve the symptoms. But unless you determine the underlying cause, your child may not be getting optimal treatment or even adequate treatment.
Under the best of circumstances making the diagnosis of ADHD is a tough call. Unfortunately, it is not usually done correctly and the one who suffers most is the child.
Warmly,
Anthony Kane, MD
http://addadhdadvances.com
http://ccparenting.com/parenting
Rory
I had a really hard time have my son dx with ADHD maining because of neg outlook on the whole thing. Yes the school wanted him dx. (they got it and finally 4 years they are going test him for LD)any help he can it ok with me. But has soon has you say he has ADHD people look at him differently. Yes a very double edge sword.
I totally disagree that an ADHD diagnosis is a “nice to know”. An ADHD diagnosis is an “absolute need to know”. In order to understand your differences and the challenges they may present, you have to understand the “whys” and how they make you different. Some ADHD differences are life threatenting!
Your statement is akin to saying a “heart disease” diagnosis is a nice to know.
Undiagnosed and untreated ADHD can result in alcoholism, drug addiction, speeding, sex addiction, job loss, failed relationships, etc.
Your position assumes there are no critical consequences of undiagnosed ADHD, which is definitely not the case.
My youngest son, now 24 years old, was diagnosed with ADHD when he was 17. My husband and I did not understand ADHD, the diagnosis, or the impact it had on my son’s life. We didn’t understand why it made him different. So we did nothing. We didn’t take advantage of the special programs offered by his school because my son was concerned they would make him “stand out” in his senior year. Unfortunately, it will take us many years to heal the wounds we caused with our constant criticism of our son’s lack of focus, inability to stay in one place, poor grades, etc. After struggling with drug addiction, very low self-esteem, challenges with relationships, multiple jobs (as many as 5 in one year), etc., my son is on the right path of understanding who he is and what works for him.
When my oldest son, now 26, struggled to graduate college after 6 years, my youngest son said “mom, David has ADHD more than I do”. My oldest was later diagnosed with ADHD, after struggling with a depression diagnosis and related medication, several OVI’s, multiple speeding tickets, low self-esteem, and multiple jobs. At 22 years old he asked me in between tears “what is wrong with me”. Although I said we would get him help, which we later did, at the time I had no clue what was wrong with him. The ADHD diagnosis was the critical 1st step in him understanding who he is, why he did the things he did, how to manage his ADHD and most importantly, accepting himself for who he is, ADHD and all. Although he is still learning how to manage his ADHD, he truly gets it now.
I was able to locate an excellent doctor for my son. I asked the doctor to also test me for ADHD. I was diagnosed with ADHD at 50 years old. I had suspected that I had ADD for many years, but only thought it was possibly the cause of my disorganization. It wasn’t until I was diagnosed and understood the diagnosis, that I realized that this was why I literally worked 12 hour days, 6 days a week, for at least 10 years. It was taking me twice as long as my peers to complete things. It was the casue of “executive dysfunction”. I am an executive at my company, and my ADHD has caused me to almost lose my job multiple times. It is only because of my position that I was able to “disguise” my many shortfallings. I was also suffered from depression for many years, and learned that it was the result of my ADHD. I still struggle, but having this understanding allows me to work on the right things.
Had we had the ADHD diagnosis earlier, along with an understanding of its impact on behavior, both positive and negative, we would have possibly avoided or at least mitigated many of the challenges my sons experienced. Knowledge is power, and up until the diagnosis, we were powerless. Back to my heart disease analogy, without a diagnosis you don’t know there is a problem or how to treat the problem, if needed. The same can be said for ADHD.
I must add that there are wonderful benefits of having ADHD. Both of my sons are very creative, and brilliant. I do attribute this to the ADHD. And in my field, being able to work feveriously on multiple projects has provided me with many many opportunities and promotions.
Thanks – Pam
I’ve been a referral source for AD/HD adults for 20 years. Dr. Kane makes an important point. Far too many people are diagnosed with AD/HD without other diagnoses being ruled out first. One doctor visit and some labwork can often rule out other conditions with similar symptoms but DIFFERENT treatments. That said, in my experience, most adults who think they are AD/HD, more often than not, are appropriately diagnosed with AD/HD. When adults call for referrals, one of the first questions I ask is, “How do you want your life to be different on the other side of diagnosis and treatment?” Not an easy question to answer, and interestingly, I get quite a variety of answers. I discuss all of their diagnosis and treatment options as it relates to THEIR needs, preferences, and goals and then make myself available in the future, if they get stuck or have additional questions. Not everyone needs a SPECT brain scan, or testing of learning, attention, and memory, or an I.Q. test, or a personality inventory, or medication, or nutritional supplements, or neurofeedback training, or counseling, or coaching, or tutoring, or skills groups and classes, or a support group or forum, BUT most of us would benefit from education about their “differences” and some or all of the above. In my mind, important questions to ask are, “Which of these options can I afford this year?” and “Which of these options have the best chance of meeting my needs over the next couple of years?”
I grew up undiagnosed… I thought I could “discipline” myself through ADHD, as did those around me. My son, a young child, already has a grouping of labels, and what that has done is help us cary on conversations with “the right people.” HE is not those labels. He is a brilliant and sensitive young boy whose groups he happens to be a part of include ADHD, Asperger’s, and gifted. We join discussions and talk to experts in each of these areas every day. The labels have definitely helped in school and add to peoples’ understanding of his eccentricities. My hope is that all of this will provide him with a better understanding of himself and the confidence to be proud of his differences.
Once I discovered AD/HD, realised that it might apply to me, and then researched it, it was like a light being turned on. It explained everything(ok not absolutely everything)and I now had areas of my life that I could finally get some sort of control over. Even if that meant giving the control to someone else. It meant that I could explain myself to friends and ask them to make allowances in some areas. I don’t use the diagnosis as an excuse, but I see it as handle, something I can get a grip on to finally get some control. I was 52 when I discovered this, supposedly intelligent but had achieved very little with my life. Now I can see where I am going with far more clarity.
So I think having a diagnosis is a starting point to give people more direction with whatever they are having to deal with. As others have already said it changes an unruly child into one who has different needs. I personally think that every one of us has different needs and could all be better functioning humans if we understood ourselves better. Those of us with AD/HD have been given more guidelines than the rest if we learn to use them. If we aren’t diagnosed then how will we know?
I am the Mother of two wonderful adopted boys, who happen to have ADHD, fetal alcohol, and probably Bi-polar.. not to mention that I am ADHD among a few other things.. Makes a handful at home if you can only imagine.
Diagnoses: yes, or no?? Having a diagnoses from the school’s side: it has been very helpful in order to get my son the help he really needs, but there is still a lot of misconception per the teachers, special ed staff, etc. what ADHD really is, how it effects our children, and ways they could really help them better.
I feel like I am going to school all over again, which is draining. Due to the other issues that my boys suffer from, their psychologist say that a diagnoses is not really needed as they are going to treat them the same, medication wise: which is good for me as long as they are able to function and feel good about themselves in this world.
I need more diagnoses for my oldest son, as I really think that there is a stronger underlying diagnoses that my son has not been diagnoised with; but where in the world do I go??
Per Diagnoses: It is needed for some and not everyone, so I pray that it will stay available for those of us that need it.
When I used to teach English as a Second Language in China town, a young boy was put into my class and I was told “He is a very bad boy. He is uncontrollable. He cannot learn”. Well, that obviously peeked my curiosity. I am ADHD so when I met this “little bad boy”, I realized almost immediately by his behavior that he was ADHD, too. So I kept him busy because I realized he learned while being active. He turned out to be my best student. I was thrilled that he confided in me about his martial arts training and how he was doing in that and he was thriving in my class. I truly believe that not enough teachers or professionals who work with children or adults in an type of learning situation have the requisite training on how to work with people who learn “differently”. All my learning years, and there are many, I’ve often had to tell teachers that they need to realize that no everyone learns the same way, you have your physical learners, your mental learners and those who have to do both before the “lesson” becomes one with them. I always look at any one I’m teaching and ask them how they learn and go from there. And if they don’t know, then I observe how they appear to be learning and work with them that way. It becomes easier for them to learn and easier for me to teach. I’ve had too many friends with learning disorders who didn’t learn simply because their way of learning was never addressed, nor did the teacher care to address their case.
When I was diagnosed as an adult with adhd, it was almost like an incredible sense of relief came over me. I was relieved to know that I wasn’t feeling crazy, lazy, depressed, frustrated, contentious, other various symptoms, all these years for nothing. I was especially relieved to have finally found a rhyme and/or reason to start educating myself with and have the chance of finding remedies, tools, medication & support necessary to help me feel and live a better life.
I believe the contentious reality whenever contending with the actual and/or possible diagnoses of adhd will totally rely on your position as either the parent of, the child with, the teacher for, the spouse to or the adult whom. I definitely believe the benefits of knowing and learning about the effects of adhd regardless your relative position tremendously out weigh the ignorance of not!
Starr,
You have really hit on an important issue! I have a daughter in 10th grade and it has been a struggle working with the school. The teachers this year have been very responsive to my questions and explanations about what is going on with her. This year she has the same teacher in 2nd hour and 6th hour. He has been a great help since I asked him to observe her to see how she may act differently in the two classes. He will also be one of her teachers next year which will help to assess how she may be changing from year to year. We need more teachers like you, Starr!
Hopefully my comments will get edited out. What will DSM-XVI say? Let’s write the answer together. Here’s a start: Make columns for each of the individual labels that seem to describe aspects of our and our childrens’ presentations (bipolar, anxiety, depression, ADHD, Asperger’s, Sensory Processing Disorder, Gifted, Learning Disability, Dyslexia, Auditory Processing Disorder, oppositional, etc., etc., etc…) The last column, label “Person”. Where do the presentations overlap? My guess is they overlap in many places. What does that mean? I guess that is what the DSM tries to do but who writes the DSM? Us? Not most of us. We get measured. I think if we put our heads together we can intuit more than a hundred psychological tests can measure. Let’s think. I like to label and classify and organize etc. but I don’t like to think too hard (without writing, anyway). Let’s think together. Okay, the labels are good for schools, but we need to move beyond the labels so the schools will follow and treat our children as individuals. (And so we will be less pressured to experiment on ourselves and our children with drugs.) Is there a person-based movement beginning in medicine? Psychology can follow suit. Another thing that bugs me is, the labels – (the Dx) – they have social consequences – and the social consequences have presentational consequences – we start with these pure infants and children and as they get tossed and tumbled in this social world – their parents, guardians, siblings, caretakers, schools, and so forth – they develop defenses to survive and then we call it biology. I do believe we are all unique biologically but I do believe that the defenses that evolve to cope within the interface of nature and nurture are not purely biological. I think we need to think actively regarding the social environment as a formative as well as a deforming force in our childrens’ and our own development and do as much to address nurture as we do nature. I’m 49 with an almost-8 year old child.