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Parents of ADHD Children

Why bother with Diagnosis?

I read the article this morning on How to Get the Right Diagnosis by Ms. Barrow, but I left the article feeling as I often do - WHY?? Why go through all the trouble of the diagnosis if you already know your child has ADHD? Maybe the article or discussion thread is already out there, but there isn’t a lot of time spent on the “what to do with the diagnosis” piece. So here is what I know:

-An ADHD diagnosis can hurt a child later in life by preventing them from getting into certain occupations or even schools.

-I struggle with whether to medicate my child, so if you don’t want to medicate, you wouldn’t need a diagnosis for that.

-In my case, a proper diagnosis could cost thousands of dollars and still leave me with uncertainty.  I will probably never know the cause (and its too late to do anything about it anyway), so the testing will just tell me, MAYBE, where my child could be impaired. I feel like I can already explain this without spending thousands of dollars on testing.

-If the purpose is to get your child an IEP, I don’t believe you need a diagnosis to get one, you just need to start a letter-writing campaign to the school, which I believe you have to do even if you have a diagnosis.

I would just like to hear from those who have spent the money and time - how did it help? What did your child gain from the experience? What am I missing?


I am facing the same question and have the exact same sentiments.  I am looking forward to see what others reply here.  I will tell you one thing.  I have been in contact with a great behavior consultant in LA who insists that professionals invariably diagnose and attempt to medicate basically everyone that comes in.  Yet another reason why I don’t think it is necessary or good for my child.

Posted by BlinkBlink on Jan 31, 2014 at 9:06pm

A diagnosis opens the door to opportunity. It helps you understand your child at a more meaningful level. It helps you gain access to services and accommodations at school (most parents have to fight even with a diagnosis to get a 504 Plan or IEP in school). It provides the opportunity for medication, which my son could not function without at this point. It explains a lot of whys.

If your child and your family do well without a diagnosis, then I guess there’s no need to pursue it. But most need the diagnosis to access the means to success.

ADDconnect Moderator & Mom to Tween Boy with ADHD and LDs

Posted by adhdmomma on Jan 31, 2014 at 9:23pm

I agree that putting a label on your child can have it’s good side and bad side.  On a large scale, humans like to put things into “explanation boxes” so that we can understand our world.  The entire medical profession is based on this and medical training in “differential diagnosis,” the way to figure out what’s wrong with a patient, is based on the goal of what “box” to put that patient into so they know how to best treat him/her.

Our kids are both beneficiaries and victims of these boxes.  My son is now forever labeled as having ADHD.  Having him go through very thorough educational testing was beneficial because we could rule out any other major issues with his learning.  It was actually a relief to know that his biggest issue is ADHD and he doesn’t have any other major issues that will impede his learning beyond a minor auditory processing issue.  This would be one reason to go through the testing to get a diagnosis—so you can rule out other things that might benefit from interventions.

On the other hand, I have friends who really stepped away once my son was diagnosed, and any misbehavior is automatically assumed by them to be due to his ADHD.  Their kids can be very judgmental too.  It’s a heavy burden to bear. At the same time, I’ve met other parents of kids with ADHD and have found a new community of pretty awesome people, all of us struggling with similar issues.

Your child might also benefit by having a diagnosis, but might not realize it until later.  It seems that almost every adult who has been diagnosed later in life with ADHD has felt relief to finally understand why they feel so different, or why they have struggled in some way.

I know one graduate student who had an undiagnosed learning disorder who almost failed out of graduate school because her disorder wasn’t officially diagnosed.  The system is set up to give accommodations only to those who have a diagnosis.  Luckily, she got a diagnosis after several months and was able to get the accommodations she needed to stay in graduate school.

There’s no going back once you have a diagnosis.  It can be a scary thing, but it can also have it’s good sides.

Posted by MendelZ on Jan 31, 2014 at 9:27pm

I am coming from a different place.  My husband and I fought a diagnosis for several years due to the “stigma” it would place on our daughter, but at 8 things were getting worse, not better, and we had a change of heart.  Our home was not a calm, happy place and we knew something had to be done.

We homeschool so we are not in need of an IEP or a 504 plan, but getting a diagnosis has been a relief for us.  It helps us to understand what we are facing and how we can help our daughter face the challenges she has been battling for so long.  It isn’t just “poor parenting” or “a lack if firm boundaries.” She has a medical condition that can be treated. 

We have tried the non-medication route and unfortunately for us, it did not work.  Getting a diagnosis helped us determine the therapies that would be most beneficial for her, how we can adjust our parenting techniques, and helping her to see there is a reason for the difficulties she faces.  She is not a “troublemaker”; she is a kid with impulse control issues, distractions, and focusing challenges that can be overcome with the the proper diagnosis, treatments, and a doctor that does not “push” medication but tries to help his patients to function to the best of their ability.

She now takes medication (a nonstimulant) and while it is not a “cure” it does help her to focus and be less distracted, making it easier to reason with her. 

Right now she sees an occupational therapist since she also was diagnosed with dyspraxia and sensory issues.  Her hyperactivity is still something we are dealing with but with the right therapies, we have found ways to help her cope with that, as well.

I suffer from anxiety and depression.  I tried to fight it on my own for several years due to the “stigma” associated with it and all it did was make my life miserable.  Every day felt like an uphill battle.  Why would I do that do my child? 

I am now seeing a doctor to help with my condition.  It is not something than can be cured overnight, but with the right therapies and medication, my life is much more enjoyable.  It also makes it much easier to help my daughter to see that her symptoms can be treated and she can find ways to cope.  There is no “cure” for ADHD but it can be managed if it is diagnosed and treated properly.

It is different than it was in my day or even my father’s day as ADHD seems to run in our family.  Back then kids with with ADHD were just “brats that needed more discipline.” We no longer see ADHD as some sort of “stigma” that will follow her around the rest of her life.  She can be as productive and successful as any other kid her age but as her parents we have to do what we feel is right for her.

She is a great kid but living with a child with severe ADHD can be exhausting and overwhelming.  My husband and I finally realized, it isn’t about us, it is about doing what is best for her and helping her to function to the best of her ability.

Posted by mjsmom73 on Jan 31, 2014 at 9:38pm

Wow - I must be really blessed in my area.  When both of my kids were diagnosed (at 4 & 7), it was huge relief for me to know what the problem was & opened the door to understanding for their teachers & other adults who work with them.  Our pediatrician has never pressured us to medicate them (she wouldn’t medicate the 4-year-old until he was 6) - just presented it as a treatment option & has worked with us as we have put them on medication for a short while & then taken them back off.  Our friends have been very understanding & didn’t treat us any differently after the diagnosis than before.  It was more like “oh, I get it now” (in regards to the kids’ behavior). I feel bad for the kids I see at our school that obviously have some issue going on, be it ADHD or something else, whose parents refuse to have them diagnosed & never treat the problem.  Since their teachers don’t know if these children have a diagnosable condition, they are just labeled as problem children, not children with an issue that can be addressed.  I think this is much more detrimental to the child’s self esteem in the long run than having a diagnosis & knowing what they are up against.  Every school is different with how they deal with ADHD, so I guess maybe we are lucky to be in a school with such understanding teachers & staff.  So, for us, having a diagnosis has been very beneficial.

Posted by Smith4 on Jan 31, 2014 at 9:46pm

I don’t have time to read the replies so please forgive if I repeat.  You’ve got it turned around.  Actually an official DX is necessary for accommodations at school and especially for taking the SATs and ACTs which is one third of the criteria for getting into a good college.  So if they have accommodation on those tests their score will be higher.  My son is a Freshman in High School and only this year is he using the accommodations, but we had to show an official medical diagnosis to get it.  Also, ADHD well treated is fairly invisible (during the day : ).  When we had the 504 meeting at school his teachers told us they were very surprised to learn he even had it so I don’t think you have to worry about discrimination.  All doors are open to our children if they get the right treatments.  Best of luck.

Posted by Ilana on Jan 31, 2014 at 11:11pm

Just to clarify, I understand we all have unique situations, so I am, by no means, questioning parents who have pursued diagnosis. In our case, our child has outwardly nearly invisible symptoms, although we believe he has moderate to severe inattention. The hyperactivity manifests as relatively minor fidgeting, and the impulsivity is also low grade.

I also wanted to point out that we are familiar with medical disqualifications for all sorts of schools and professions. Police, fire, military, federal services, all the service academies, flight training, etc. Not trying to scare parents, but it is not true I every case that they will be able to pursue their chosen career path if they have that label on their medical and school records. In my own mind, I guess I also wrestle with the idea that if they need an accommodation to get through a test like the SAT, I have a problem. I need to work so that he can function in everyday situations without issue, and if he can’t, he just may not be able to have the career he wants. Life is not always fair, for sure.

Posted by Gretaj on Jan 31, 2014 at 11:57pm

I am a diagnostician and I get this question all the time. Simply put, a more accurate diagnosis leads to more effective treatment and thus better outcomes.

That’s all I have to say.
I hope this information is helpful to you.
Susan in PC, Ohio

Posted by SueH on Feb 01, 2014 at 12:27am

-An ADHD diagnosis can hurt a child later in life by preventing them from getting into certain occupations or even schools.

Says who?

-I struggle with whether to medicate my child, so if you don’t want to medicate, you wouldn’t need a diagnosis for that.

True.  My son was diagnosed when he was 9.  (We’re Canadian, so it costs us nothing more than parking fees at the clinic.  And I guess in our taxes, but we won’t get into that!)  He could cope with support, structure and accommodations.  This year at age 11 though he hit a wall.  All of his symptoms increased tenfold and we’d already tried everything else.  He’s on medication now and his teacher says she’s amazed at the difference.  He still needs accommodations and support and structure, but the huge amount of anxiety is gone.  The signs we were all seeing of ODD are fading.  Our psychiatrist says this is normal at this age as there is huge brain development happening (much like before they were 5).  So what I’m saying is that things might change.  You can’t rule anything out with an ADHD kid.

-If the purpose is to get your child an IEP, I don’t believe you need a diagnosis to get one, you just need to start a letter-writing campaign to the school, which I believe you have to do even if you have a diagnosis.

Where we live, I still don’t think I can get my son an IEP, even with the diagnosis.  I’m trying, with the help of the specialists we’re seeing and my son’s teacher who has a background in special ed, but there are requirements and even with the crisis we had before the holidays, I don’t know if I can get one.  Without a diagnosis I’m just the crazy mom making things up for her bratty kid.

Without a professional diagnosis you could be missing something.  It might not be ADHD, it could be a learning disability instead.  Probably you’re right, and learning as much as you can about ADHD, and then following the advice you learn, should help your kid.  Maybe you don’t need a diagnosis.  Maybe.

Posted by Rai0414 on Feb 01, 2014 at 1:05am

Actually… the more I think about this one, the more angry I get.

If your sole reason not to have your child officially diagnosed was the money, and that you were researching ADHD and taking steps to help them, and it was working because their ADHD is mild, and you educated your child about ADHD as well, then fine.

But if your reason to avoid a diagnosis is because of any stigma… you’re contributing to that stigma and making it worse for everyone else with any kind of mental health issue.

ADHD isn’t just about school performance.  It affects relationships and home life too.  People will make comments without thinking and those comments will impact your child’s self esteem.  If they don’t know that that person is wrong and why (“I’m not lazy, I have ADHD.”) they are going to internalize those comments and it will become a part of who they are.  Have you seen the stats on teen pregnancy and suicide in ADHD kids?  They’re high.  Really high.  To me, an official diagnosis from a doctor is important because if nothing else my son knows it’s not his fault.  It’s a medical condition and he doesn’t need to be embarrassed about it.

Posted by Rai0414 on Feb 01, 2014 at 1:21am

What you are missing is the ADHD is THE most treatable psychological disorder there is. The medications work very well to treat the symptoms and have relatively few side effects when administered correctly - by an expert.

The second thing is untreated ADHD shreds children’s self esteem. You can’t see this happening but it is. And that, according to our child’s psychiatrist is worse than symptoms of ADHD. Low self esteem is resistant to treatment!  ADHD is very treatable.

Posted by YellaRyan on Feb 01, 2014 at 2:23am

I am a special education teacher. My son and I have ADHD.  Even though I “knew” he had ADHD at an early age, it wasn’t easy to get the official diagnosis and make the decision to medicate him at age 9 (even though I medicate my ADHD).  By getting a professional evaluation, I gained a better understanding of my son’s academic strengths and weaknesses.  He now has a 504 plan and enjoys school so much more now.

Please make sure you have accurate information about school records.  It is unlawful for a child’s disability to be listed on report cards and transcripts.  If there is a 504 plan or IEP, these documents are confidential.  I have NEVER heard of a diagnosis of ADHD preventing anyone from getting into college or occupation…that would be unlawful discrimination. It would be up to you/your child if you wanted to share the diagnosis with a college or employer.

You don’t have to spend thousands of dollars; your pediatrician can make the diagnosis (through rating scales completed by teachers and parents). I went through a developmental pediatrician and did spend $1,300, which was very difficult to raise but SOOOO worth it!  If you feel that your son’s ADHD is significant enough to warrant an IEP evaluation, then you can write a letter to the school’s child study team to request an evaluation.  You would not have to pay for the evaluation if the team agrees with the need for one.

Lastly, please know this:  if you do not get the correct label for your child, others will give their own label…and the label they give will probably not be one you approve of.  As a teacher, I have seen undiagnosed students with ADHD labeled by educators as lazy, uncaring, “bad” kids.  Appropriate labels HELP teachers understand students’ behavior and needs. 

I wish you and your son well on your journey.

Posted by running late on Feb 01, 2014 at 6:32pm

Thank you, running late, for your caring reply.

Unfortunately, in our case, we are under the federal medical system, and the bureaucracy and incompetency involved will cost us literally years and many potential mis-diagnoses. We have even been told by the system administrators that we need to go off the regular plan and pay for medical care if we want to be able to chose our own doctors (such as a developmental pediatrician).

I attempted as an adult to get medication for my ADHD and was threatened with loss of my job and told that ADHD was a made up disease by my doctor. I am not allowed to sue the federal government as an employee, and like it or not, the stigma created by starting that fight would have cost me my job and reputation anyway.

We have had relatively good luck with teachers who have been mostly very accommodating (pulling him up next to them during tests to be able to remind him to keep taking the test, otherwise, he would time out and not finish, for example), although one stated that she “did not believe in ADHD.” The teachers have admitted that it takes them nearly 1/2 a year to “learn” my child, so they cannot make specific recommendations to the study team for at least that long. What I have gotten from the schools is that he is not deficient enough on his grades and testing to warrant receiving testing from the school. The teachers are wonderful and mean well, but the bottom line is that there were too many other kids who needed support for them to give the kind of attention to my child that I felt he needed. We were in the fortunate position of being able to homeschool, so that was how we decided to handle it. I understand this is not an option for everyone, but for us is was the logical choice given our experiences with the school. The schools, of course, do not see ADHD as an LD, so even if I had a diagnosis, he gets no special services, the only thing they can do is accommodations. In my mind, if you have to force a teacher to give your child accommodations (caveat- this is MY understanding), which are essentially a legal mechanism forcing them to do so, we have a problem. I do not like the idea that I need to force a teacher to do anything- we need to have a working relationship and I guess I just didn’t feel I could work with someone who was unwilling to help or worse yet, who believed I was making the problem up.

SO that leads me back to my original question because at this point I can either fight my medical system, or pay out of pocket to get a diagnosis. SO far, I have been led around and around in circles with no end in sight, and huge anxiety and stress related to the inability to get help, which is greater than the stress and anxiety of working with my child. I am concerned there is an underlying LD issue and that I am missing out on some wonderful support and therapy, but what I have to do to get there, just wondering if it is worth the price in our family’s sanity.

Last note on labeling. For us, homeschool also solved that problem. We are in a group of parents who are always there with their kids and who model supportive relationships. We are in a Christian community who understands we are all flawed and need to lean on each other for support. I explain my child has ADHD, and the parents do not allow bullying or name calling, and often lend a hand when needed. My “normal” kindergartener was not spared that fate in public school, as within a week of starting school, I received a phone call from the school telling me that he had been punched by another kid in the class. He came home almost every day being called names- I’m assuming for being normal?

Posted by Gretaj on Feb 01, 2014 at 7:59pm

Diagnosis is really important, mainly to have your child taken seriously and not brushed off as “lazy” as my son was.  I am thankful that he was diagnosed simply because now his teachers have an understanding, hopefully, that he is not just lazy.  As for overmedicating kids, if your child does not have ADHD, the meds most likely won’t do anything—nothing will change, so you will have ruled something out.  And if you have a good evaluation, they won’t just throw meds at your child anyway.  Yes, it is expensive, but you can request an evaluation through your school.  In my son’s case, it is a good thing that we had the evaluation because we found out that yes, he does have ADHD, but he also has Asperger’s.  Not a happy diagnosis, but at least it is done and he must have an I EP.  I was spinning in circles trying to figure this out for years.

Posted by americangothic95 on Feb 01, 2014 at 9:55pm

It seems there is both a problem with your insurance, it’s provider (your employer?), & your local school system. 

Re the school system, you may be able to stay with the superintendents office.  If no success there, you might be able to all the courts for an Educational Guardian Ad Litem (GAL).  They are attorneys who know what your child’s rights are.  Unfortunately, not all special ed providers know the legal requirements for various conditions.

Until I began reading these boards, I had no idea my social difficulties & anger issues could be related to my ADD.  I was badly bullied at school all the way thru high school.  Combined with lack of a father at home after my parents’ divorce, navigating relationships was completely Greek to me.  I would’ve benefited from a diagnoses, socialization classes, & anger management as a kid.  I took my frustrations out in my younger sister.  I needed help with organization, long term planning for projects such as term papers, reports, large projects requiring multiple steps.  My mother was often working two or three jobs just to keep the family afloat.  This made her unavailable to help with these thing, but possibly unqualified anyhow.

As far as the doctor, it would seem you could at least get a second opinion for yourself, or see a pediatric psychiatrist for your child.

Best wishes!


Posted by ylt222 on Feb 02, 2014 at 1:01am

Question: If your child had a suspected medical problem would you have him formally diagnosed knowing that a diagnosis could lead to appropriate medication, supports and services which could help him feel better and have the opportunity to succeed in life?

Why is this any different? 

The world has become more educated about ADHD and the long lasting, often devastating effects it can have on people (not just the adhd person, but everyone around that person).  Stigma is not like it used to be.  But even if it was, who cares!  It’s more important to meet the needs of your child by knowing what you’re up against then to worry about what strangers will think of him.

I have suffered from adhd my entire life which wasnt diagnosed until age 39 & then only after my children were finally diagnosed.  I too was worried about being labeled and placed that burden on my kids until i came to the realizatiin that life doesn’t have to be so hard. 

Are we teaching our children that it’s not okay to ask for help?  Do we want them to live with the low self esteem and constant feeling of failure that oh so often accompanies a person suffering from adhd?  Not to mention additional mental/behavioral problems that arise with many people who live with untreated ADHD like self-medicating, addiction, and suicide.

I can tell you from personal experience that my life was hard and only made more difficult by the “suck it up and deal with it” attitude.  I’ve never felt “normal” or whole like i could have because of not getting the right help early on.  This has affected every aspect of my life.

I won’t let my children suffer through life as i have because of this very treatable medical disability. Please do the right thing. Do the best thing for your kids by getting a diagnosis from qualified professionals who know how to help your family through this challenging time.

Posted by angiebaby on Feb 02, 2014 at 1:03pm

Our son was diagnosed in 1st grade with ADHD by a panel of professionals.  We wanted to have him evaluated outside the school system.  He was having difficulties in school.  We were unsure what was wrong with him.  We spent a lot of money for the diagnosis because our insurance did not cover most of it.  My husband who was relunctant to spend such a large amount of money for it now agrees with me that it was money well spent to help our son.

The school offered little to no help with our son at school until we received an official diagnosis.  The place we took our son was highly respected so they knew the diagnosis was accurate.  After the diagnosis, my son received help with the Speech Therapist, Occupational Therapist, School Counselor, and Special Education Teacher.  He never received these services prior to his diagnosis.

The panel of professionals gave us an extensive report of their findings which helped us understand our son better.  We were also able to share the report with the school staff so they were able to understand him better also.

The panel of professionals also were able to educate us about our son’s rights, his strengths, his weaknesses, ideas on how to help him at school and home, and books to continue to learn about his condition. 

We did not want to put him on ADHD medication but we did it because the professionals suggested it would help him.  It did help him immensely at school and home.  He has minimal side effects from taking the ADHD medications (he may not eat a lot at lunch). 

Our son was honor roll prior to the diagnosis but his grades got higher.  His behavioral problems at school improved and he even received Improvement Awards at school.

Good luck!

Posted by Nick's Mom 8 on Feb 21, 2014 at 3:22am

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