View Full Version : What are the downsides of a diagnosis?


ADDon1
10-20-16, 01:33 PM
My wife and I both have ADD. As the apple doesn't fall far from the tree, our two kids are having similar symptoms. Overall they are doing great in (primary) school, but some problems arise here and there.

We've come to a point where a diagnosis would open certain 'doors' that otherwise would stay closed. I've read about all the greatness of a diagnosis, but I'm skeptical, as everything has it's downsides. I'm interestred to hear about these downsides, as other parents and kids experience(d) them.

How did a diagnosis influence the life of you kid(s)? Or your life as a kid?

:thankyou:

Tetrahedra
10-20-16, 10:43 PM
I don't know specifically about children, but I did ask a similar question last week about adults. You can see it here and maybe it'll be of some help: http://www.addforums.com/forums/showthread.php?t=180667.

I was not diagnosed as a child, but I really wish I was. I would have been able to get the help I needed. Instead I grew up with no social skills (I was very well mannered but couldn't really interact well) and then I crashed into a metaphorical wall when I was in college. Looking back, I'm not sure I would have cared much about the downsides of diagnosis as long as I got the help I should have gotten.

There are a couple of "downsides" I see that can be avoided fairly easily. The first is that some children with ADHD grow up thinking that they have a disorder that denies them consequences of their actions. So they think they're special snowflakes that can do whatever they want or that they have special privileges, etc. The second downside is that many people jump straight to medication for children. I'm not sure that's always the first thing to go to, though I don't think it should be withheld if the kid actually needs it. But if changes in the schedule, school accommodations, more exercise, etc. can help out, it would be better to start there, and medicate only if necessary.

As far as legal downsides, I don't know.

sarahsweets
10-21-16, 02:00 AM
My wife and I both have ADD. As the apple doesn't fall far from the tree, our two kids are having similar symptoms. Overall they are doing great in (primary) school, but some problems arise here and there.

We've come to a point where a diagnosis would open certain 'doors' that otherwise would stay closed. I've read about all the greatness of a diagnosis, but I'm skeptical, as everything has it's downsides. I'm interestred to hear about these downsides, as other parents and kids experience(d) them.

How did a diagnosis influence the life of you kid(s)? Or your life as a kid?

:thankyou:

Well your diagnosis helped you right?
medication is a first line treatment for adhd. A diagnosis is necessary to have medication prescribed.All three of my kids have adhd. My oldest who is 20, was diagnosed at age 3.5 and began meds at age 4. It saved his life.

sarahsweets
10-21-16, 02:04 AM
The second downside is that many people jump straight to medication for children. I'm not sure that's always the first thing to go to, though I don't think it should be withheld if the kid actually needs it. But if changes in the schedule, school accommodations, more exercise, etc. can help out, it would be better to start there, and medicate only if necessary.

As far as legal downsides, I don't know.

Medication is considered a first line treatment for adhd. My son was diagnosed at age 3.5 and began meds at age 4. (there is a sticky in childrens diagnosis about it if you want to read our story).
Meds saved his life. So many people who take meds themselves bristle at giving meds to kids and I dont understand why.

ADDon1
10-21-16, 06:56 AM
Well your diagnosis helped you right?
medication is a first line treatment for adhd. A diagnosis is necessary to have medication prescribed.All three of my kids have adhd. My oldest who is 20, was diagnosed at age 3.5 and began meds at age 4. It saved his life.

No, for me a diagnosis didn't help. Medication being the first line of treatment made my life worse actually. I've been using Ritalin far too long because I had a psychiatrist and doctor with minimal experience with ADHD. I didn't know that back then (almost two decades ago) and about the importance of having a doctor who has a lot of experience with ADHD.
Some symptoms were magnified because of the Ritalin. But my concentration (among other things) was good, so the doctors found that I was better of using it than quitting it. It ended up very bad on one hand and very good on the other, but Im not gonna discuss that here now.

What I've experienced also is that because ADHD is 'booming', it's also booming business. It attracts a lot of so called 'specialists', 'coaches', 'counselors' and so on, that aren't as good and experienced as they claim to be. Needless to say I'm very cautious on this subject now. And I have to say that what didn't work for me, could work great for others.

From what I've read and heard I think that the US has a lot more doctors/specialists with ADHD experience than anywhere in the world. I have a very good psychiatrist now though, and an excellent coach :yes:.

someothertime
10-21-16, 08:41 AM
I am so glad sarah is here to share her words. I do not really have much to say on this, other than, to many who go down the road of "treatment"..... often. what can be seen is a great big cloud of stigma.... as with any other "difference".... and often, one might never see any benefits which might be pervasive in ones day to day.....

I do know that it seems that pre-teens / teens ( workload + culture stresses )..... and early school seem to create marked needs..... and the other times not so much.... generally speaking....

You speak of the "hype" and I think this is key no matter which way you go.... avoid hype at all costs..... :) Clouds are no good. Treat or not treat, integration and facilitation are the goal. Clouds impede this. So does isolation and compartmentalisation...... You seem to have of good grasp on these things.... :)

sarahsweets
10-21-16, 09:35 AM
No, for me a diagnosis didn't help. Medication being the first line of treatment made my life worse actually. I've been using Ritalin far too long because I had a psychiatrist and doctor with minimal experience with ADHD. I didn't know that back then (almost two decades ago) and about the importance of having a doctor who has a lot of experience with ADHD.
[quote]
Look, I am not trying to tell you how to feel, I am just trying to share something that may help you deal with your child. What happened to you could have been dependent on many factors. Did you try meds other than ritalin? If you had side effects like that you shouldnt have been forced to deal with it, suck it up and keep taking ritalin. And even if you went to an incompetent doctor, at some point we have to assume some culpability in your own medical care.



[quote]What I've experienced also is that because ADHD is 'booming', it's also booming business. It attracts a lot of so called 'specialists', 'coaches', 'counselors' and so on, that aren't as good and experienced as they claim to be. Needless to say I'm very cautious on this subject now. And I have to say that what didn't work for me, could work great for others.

Not sure I would say its booming- at least not like it was in the 90's. If anything, the naturapath/homepathic business is booming and sometimes provides promises of cures and treatment. People assume because its anti-pharma it must be better, and it lines the pockets of the snake oil salesmen. Not all natural ways of dealing with adhd are bad, just a majority of them promise things they cant deliver.

From what I've read and heard I think that the US has a lot more doctors/specialists with ADHD experience than anywhere in the world. I have a very good psychiatrist now though, and an excellent coach :yes:.
Im glad it worked out for you in the end.
:)

ToneTone
10-21-16, 11:18 PM
I'm not sure what the downside could be. Having a diagnosis doesn't necessarily trigger any particular behavior. You can get the kids diagnosed and treated, and not ask for any accommodations from school. Those are not the same.

So asking about the downside to a diagnosis is sorta like asking, "What is the downside of taking my car to the repair shop?"

Well I suppose I could get a car mechanic who is bad ... who tries to rip me off. Who doesn't really fix my car that needs to be fixed. So in that sense, yes, you can get a provider who is bad, incompetent, lazy, unimaginative. Someone who overlooks/misses another condition. Someone who isn't helpful or wise in prescribing medicine or other behavioral moves.

Getting diagnosed doesn't put you or your kids on some permanent road that you can't slow down or turn back from. You can stop treatment anytime you want ... you can change providers, you ask for adjustments, raise or lower the medication ... avoid medicine.

Getting diagnosed can bring some "challenges." One is, as someone mentioned, how to avoid having the kids feel stigmatized. I got diagnosed as an adult and by the time I did, I had dropped all kind of stigma about mental health treatment. Lots of people don't "believe in" ADHD so a challenge is to prep your children for skepticism. One challenge is for parents themselves to feel good about getting diagnosed and treated because kids can and do read parents' body language.

Another challenge is monitoring in detail the effect of any medication a kid starts on. What is better about the kids' behavior? What is worse? What happens when? You'll want to report in detail the effects of medication to a provider. The provider will then respond and adjust the medication based on their experience and your reports. It's an ongoing process ... and actually this is the case with any provider, even outside mental healthcare, but it's more obvious with something like ADHD.

I don't know if this is a downside for kids, but adults can certainly get their hopes up about what taking medication can accomplish. Medication isn't magic and if no medication really helps, that can be a letdown. But I wouldn't worry about that. There are so many different medications at different doses that an imaginative provider will keep trying until they find the right dose that presents the largest positive effects with the lowest side effects.

A challenge is that ADHD can be frustrating and debilitating even with treatment. And a kid has to learn to manage that frustration ... But the frustration is clearly greater if the kid is NOT treated. I tend to think all ADHD adults should have therapy in addition to medication because untreated ADHD wreaks havoc on the ego and self-confidence. And no medication reverses decades of a sense of failure and frustration, etc.

So I'm thinking it would be good for kids to know that they have to work along with the medication. Getting enough sleep is important. Getting into routines is important. Exploring tricks and hacks to fill in for what the medication cannot do.
So finding a counselor to help the kid develop good coping skills alongside the medication would be ideal.

Hope this helps.

Tone

ADDon1
10-22-16, 06:58 PM
Getting diagnosed can bring some "challenges." One is, as someone mentioned, how to avoid having the kids feel stigmatized. I got diagnosed as an adult and by the time I did, I had dropped all kind of stigma about mental health treatment. Lots of people don't "believe in" ADHD so a challenge is to prep your children for skepticism. One challenge is for parents themselves to feel good about getting diagnosed and treated because kids can and do read parents' body language.

So I'm thinking it would be good for kids to know that they have to work along with the medication. Getting enough sleep is important. Getting into routines is important. Exploring tricks and hacks to fill in for what the medication cannot do.
So finding a counselor to help the kid develop good coping skills alongside the medication would be ideal.

Hope this helps.

Tone

Thanks for you wise words and great tips, that helps a lot!

I think the stigmatizing aspects bothers me the most. And it's not that you can be unlabeled when labeled :D But that's something we have to live with. We need to educate people. Psychiatric disability awareness FTW!

And you're right, learn kids what they can say to other people when skeptical and so on.

Fortunately we have a great counselor, so I think it's gonna work out great :)

ToneTone
10-22-16, 10:43 PM
Well, the labeling issue is in flux--in a good way.

Getting diagnosed doesn't mean the school categorizes you as diagnosed. Getting an accommodation and all of that--where the school officially recognizes the condition--is different from just getting a diagnosis.

I am diagnosed, and my job doesn't know ... or put it like this: the health insurance program knows ... but my bosses don't know. My colleagues don't know. A few colleagues who also have ADHD ... we have found each other and we swap silly stories about how maddening the condition can be.

But the label isn't what it used to be ... for one, lots of people are getting diagnosed for attention issues (ADHD-Inattentive) vs. the traditional diagnosis that focused on hyperactivity. Lots of "normal" people joke about having "A-D-D" ... and they do it with a touch of humor.

People with ADHD can be very bright, very creative, very charismatic ... Their problem is following through on tedious tasks, completing work, completing work on time, meeting deadlines, keeping an orderly space, remembering details, keeping up with appointments, etc.

Plus there is a lot of talk these days about working in jobs that emphasize your strengths and passions, and I hide my ADHD under that framework. "I'm not good at leading committees" or "administering anything" ... or "organizing complex meetings or conferences." Those are all my of saying my ADHD gets in the way of certain tasks without me saying the words "ADHD."

I teach young college students, and there are families that sort of stigmatize the condition, and the students from these feel the stigma.

But I run into more young people who just accept "This is the way my brain works" (again, with a touch of humor). And they don't feel bad about the "label." The label eased some of the confusion and anguish about why they couldn't do certain tasks very well.

I had a student few years back who told me she had ADHD ... and over time, I got to know her better, and began to trust her, so I disclosed that I had it. And we would share jokes and quips about being night owls, and having trouble getting started on tasks. She was extremely bright ... and could meet most deadlines ... And I don't think she had any stigma about it. She was like me: she had the sense that the diagnosis truly helped her understand how her brain worked.

Anyway, good luck to you, the spouse and the children!

Tone

aeon
10-22-16, 10:54 PM
If the diagnosis is accurate, and the administering physician is qualified, and the patient and/or parent is educated and engaged, there are no downsides, in my view.

And get those children on amphetamines without delay. The potential of a human life can be preserved.


Cheers,
Ian

Caco3girl
11-03-16, 03:28 PM
All I can say is that it isn't like it once was....in the past "special" kids were segregated, and it didn't matter if their need was inattention, mild brain retardation, down syndrome....they were all grouped together as special education. Thank GOD times have changed.

My son is 14, he was diagnosed ADHD last year. Prior to the diagnoses and the 504 he was being sent to the office almost daily but teachers who have a "student box" of what the student SHOULD be...and my son didn't fit in the box. He never did violent or rude things, but the teachers just didn't want to deal with him tapping on his desk, or blurting out questions, or not knowing when to quit when the teacher started getting upset. He spent more than 20 days in ISS the first half of last year for the stupidest things I have ever heard of...but in a nutshell they were trying to get him to behave. After the 504 he wasn't sent to the office, he was just redirected. That kept him in class and improved his grades greatly.

Yesterday he received his IEP! It's been a battle, but now he will be in slower classes, with more one on one attention, have some things read to him so he understands better what he is suppose to be reading, has more time for tests and projects will be broken up into chunks for him, as well as he will have a case worker ensuring he is getting what he needs from his teachers and the school.

I haven't seen the down side....if there is one. I have only seen an upside which means HOPEFULLY my son can now compete fairly with the other students and get the grades he works for rather than getting bad grades because he didn't understand the assignment or didn't know when the test was.

ADDon1
11-05-16, 05:24 PM
So good to hear you're positive about his diagnosis and how the school responds to it. I love your comment about 'competing fairly', that describes my feelings on this matter exactly. Giving kids the possibility to compete fairly should be very high priority to parents and teachers. Teachers and parents can be so cruel without knowing so, without proper knowledge and tools thinking they do the right things for these kids, but make it even worse. The atrocities some people with ADHD have to go trough...

ADDon1
11-06-16, 07:10 AM
By the way, I forgot to mention that we've decided to let our kids be diagnosed.

JennK258
11-25-16, 12:15 PM
What I've experienced also is that because ADHD is 'booming', it's also booming business. It attracts a lot of so called 'specialists', 'coaches', 'counselors' and so on, that aren't as good and experienced as they claim to be. Needless to say I'm very cautious on this subject now. And I have to say that what didn't work for me, could work great for others. :yes:.

Medical knowledge and understanding of behavioral disorders is booming! You just have to do your research and find good doctors. Drop 'em like a hot potato if you question their judgment or expertise. :)