Should We Get a Label?

Sticker face Pictures, Images and PhotosThere was a time when my answer was clear and firm.
I used to say…. sure, go ahead and test. Getting a label takes the pressure off the child who’s been thinking he’s defective.
A label gives you a reason for all the clear challenges that have been a part of his life.
It removes personal blame.
It’s freeing.
It’s truth.

In fact, the preface of my first book How to Get Your Child Off the Refrigerator and On To Learning takes this stand with enthusiasm.
“Put the Label on the Table” I happily burble. “If you don’t come up with a label, your child will gravitate to their own self diagnosis. And what they typically come up with is ‘I’m stupid.’ So yes, yes, and yes. Get a label as soon as you can.”

I still believe in the value of having a clear recognition of just what is going on. But the years have added to my understanding of the ramifications of that label. It doesn’t simply give you a name to call this condition. It gives you much, much more. There are things that come with this label than I had not originally realized. And because of that, I have had to make an addendum or two to that original statement. So today, my answer is not as clear and firm. It has several “but’s” and “perhaps…” that must be considered before such an action is taken.

So let’s look at how I answer this question today.

TIMES WHEN TESTING IS NEEDED
  • When you want to medicate your child.You simply cannot obtain medications without a diagnosis and a prescription. At SizzleBop we have never taken a “Thou Shalt Not Medicate” stance. We’ve been able to avoid it in our own household, but there are many families who feel it was the only option left to them. I will not stand here from a distance and proclaim them to be wrong. Indeed, I have seen behaviors from some children and thought to myself…If that were my child, I would be asking the doctor for some medical possibilities as well. Do I think medications are options too quickly chosen? Yes. But would I say they should never be an option? I can’t go there. So…if you want to have the option of medication for your child, you must get a diagnosis.
  • When you’re not sure WHAT you’re dealing with.  There are many other conditions that share symptoms of ADHD. Sometimes these other issues may have much more serious ramifications. You think it might be ADHD, but there are some things that don’t quite fit. If something more serious needs to be ruled out, then testing is in order.

Now we come to the “but’s….” portion of our journey. (not a pretty word picture). These are some of the issues that have resulted from having obtained an ADHD diagnosis that surprised me along the way.

  • You’re expected to proclaim this condition in many activities. When your child goes to camp, when they join the Scouts, when they go on a field trip, when they go to Sunday School– each of these events can sometimes be accompanied a request to inform the powers that be of your child’s condition. They may well have good reasons for it. But sometimes it has a way of singling out my child in ways I would rather he’d not been singled. Usually it is handled well, and in truth, if they didn’t ask, I might still have taken aside a counselor or leader and informed them of what to expect. But I was nonetheless, taken aback. My low blood sugar might be an issue for my Sunday School class as well, but I’ve never been asked to declare it on a registration form.
  • Job applications Will Often Ask: This one is a double-edged sword. On one hand, we’d rather not be asked. It’s personal and may well be irrelevant. And it may be used against us unfairly. On the other hand, ADHD folks are often seeking accommodations for their disability via the ADA act for job related expectations.  Not all people with ADHD qualify as being disabled. But some do, and those folks are able to use this act to acquire reasonable accommodations. So having this question appear on a job application may be reasonable. But then again, it may not be at all necessary. And in the latter cases, it is simply intrusive with the potential to present unnecessary problems.
  • Your Auto Insurance Will be Higher – There is indeed a bona fide increased risk of car accidents with ADHD drivers. (Although this can be greatly lessened by having your ADHD teen driving a stick shift rather than an automatic.
  • Armed Services aren’t Welcoming  I think that this was the hardest one of all for our family. My son had always planned on joining the military. We come from a big military family. My father, father-in-law, both siblings, and most uncles were all in the military.  And my son fully intended to continue the tradition.  So it was disheartening to learn that the military wasn’t warm and fuzzy about those with ADHD.  I was particularly surprised about this as my father is very ADHD and yet rose to the rank of Sargeant Major in the Army. The highly structured life in the army is often exactly what some ADHD folks need and indeed, is perfectly suited for them to thrive.  My son’s sudden change in career options was a blow that he’s still seeking to recover from. His path had been so clear in his mind, and now he must seek out another.  To be fair, the military is trying to work out a better approach. In fact, every time I’ve called recruiters to get the latest, it’s different from the last pronouncement. Take a look at an article here that attempts to give recent and up to date information. http://www.additudemag.com/adhd/article/801.html

When all is said and done, the truth is I wish we had not obtained a diagnosis when my son was younger. Since we did not medicate him, it didn’t provide us with many positives, but we were awash in the negatives. In addition, the very same tools and strategies that we used to help this child thrive could have been used just as easily without a diagnosis. In other words, I was permitted to play toss it, put motion into learning, use ditties and homeschool… all without a little piece of paper that proclaimed my son officially ADHD.  I’m not sure just what we gained.

I’m glad that I KNEW that he had ADHD because otherwise I would have forever wondered if something dreadful was wrong with my child. This knowledge was a relief and freed me to act upon the challenges that he presented without fear.

I don’t have a clear answer here. And I don’t want you to read my mailing as an attempt to talk you out of getting a diagnosis. But I do want you to have the fullest understanding of what is involved. In the end, sometimes it’s worth it, and sometimes it’s not.

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9 Responses to “Should We Get a Label?”

  1. Rebekah Says:

    I agree about the “official diagnosis”. Although we never got one, I know that he fits most of the criteria of at least an ADD diagnosis. Because we never wanted to do medication, I felt that it would be a detriment to him to “label” him. Definitely food for thought! Although, at times there is that small voice of doubt…. “maybe he is slightly autistic” or “maybe he falls more into the highly functional Aspergers camp”… It is a serious consideration.
    Thanks for sharing about this topic!

  2. Lindsey Says:

    When our oldest son (now 11) was little he would have meltdowns almost daily. We almost left our church because some people thought he was just undisciplined and let us know it. It was baffling but we learned to cope with whatever it was. We did have him tested when he was about 7 years old. The results showed that he has Asperger’s Syndrome. There were several benefits to “labeling” him. The first is that based on our reasearch we learned that my husband has AS as well. He was relieved to know that he wasn’t a “freak” (his words). The second was that we knew what had been causing his meltdowns and other issues and could let people know. We also learned how to help him. Since we started homeschooling those same people at church have been incredibly encouraging and supportive. Of course this is the Cliff’s Notes version of our story but you get the idea.
    Now all that being said, I can agree with your comments on labeling to a point. I am glad we tested our older son. We had no idea Asperger’s even existed and it was a relief to know what makes our son tick. BTW we do not medicate him. I have used trial and error to figure out what works for him in school. We also have a 5 year old son. He shows no signs of AS but is a very active little boy. I am sure he would be “too much” if he was in school but since he stays home he has plenty of opportunity to move around and be himself. Thanks to Carol’s books I have plenty of ideas to keep him moving while he is learning.

  3. Ami Says:

    i find this article very timely. my daughter has been tested at school and the phrase “highly functioning aspergers” has been suggested along with the idea that add can often go along with that. i am pleased with her teachers and am so proud of her progress. having said that, we’ve never spoken about it to her, mainly because i feel like we’ve never had an M.D. take a look at her and declare “YOU HAVE ASPERGER’S SYNDROME.” i just feel like i am shooting from the hip without a doctor’s paper saying it – wouldn’t want any false alarms with her. i trust the school completely and believe that she has asperger’s, but i don’t want it to become an excuse for her either. she is nine, we have had a “diagnosis” through babies can’t wait since she was around four or five, but still i wait. not sure why, really. she used to say that she was different and cry about it. we would encourage her that she was different because everyone is different in both good and bad ways. we would encourage her to look around at others to learn what they were doing – how to behave at school, when to line up for lunch, etc. now she seems more comfortable in her own uniqueness thankfully but has also taken cues from others as to how to get along in the world. i was tempted to tell her the other day but felt i was wanting her to know for the wrong reasons so i didn’t. it all feels a bit like forrest gump really so i thought about going ahead and getting a diagnosis so i could tell her. then i see this article. think i’ll wait it out a bit more. how can i tell her that we believe she has aspergers, she goes through her life and maybe she tells folks along the way that she has it, but no medical doctor has diagnosed her with it? maybe there is a way to suggest to her that we think she could fit that mold and just allow her to learn about it and see what she thinks? i hate to leave her in the dark but she’s just been doing so well that it’s been easy to overlook. will have to give it more thought.

    thanks for this article – so glad to have found someone who is a little farther ahead in this journey who is willing to share their experience!

  4. Deann Woolensack Says:

    Hello,

    We are just beginning this journey as so many refer to figuring out why our children are struggling in ways we would have never suspected to be issues for them. We have three children – dyslexia, ADD, ADHD diagnosis for kids 8,7,4. We’ve decided to get diagnosis from diffirent sources and even at this early stage are concerned how diagnosis can be used against a child in the school verses help them teach our children.
    When you have kids that from early on everyone commented on how bright they were beyond the norm but than come home with report cards that indicate their not capable to function at their grade levels you feel a need to figure out a way to help them succeed. Once you get dianoses suddenly the school attempts to tell you how you should medicated and that special ed is the neccessary route. Um, are these kids really appropriate for a classroom full of low function autism, down syndrome and brain injury youngsters. So far as a parent it’s been a sad trip with bright children who have an awareness that their not learning the same as their peers and a school system that can’t embrace that accomodations can be made. A diagnosis helps you as a parent to realize that you’re not crazy nor a “bad” parent becuase your kids are busy bees, and it gives you an idea on how to better parent these children. But agree that labeling may set up difficulties latter that could be detrimental.

  5. deann Says:

    Made comments earlier and have update and warning to all parents! After getting diagnoses decided to search for affordable second opinion as something just didn’t feel right. Because of the waiting list we decided to try meds for one child – one muti side effects and other no noticeable difference for us or teacher. Got into test center, took child off meds and after six hours of testing over two days we were amazed at the results for that one child. The other we were confirming dyslexic diagnoses and in same week had teacher inform us of his advanced math qualties. Back to ADD child – not ADD/ADHD,or dyslexic rather very, very bright!!!! What a whirlwind – now back to square one meeting with teachers/principles to figure how to repair a chid who has somehow lost self esteem and confidence to the degree of nearly failing grade level. They do recommend repeat testing in two years if still struggling but with such high IQ think will bounce back esp since no ADD issues without doubt. Scary to think we could have medicated this child for years without a clue potential for advanced learning, now we have too work with a different mind set. Testing may not only prevent mislabeling by a school system but may give you a different perspective of your childs potential. Good Luck to All (we’ll wait for third to get old enough for testing as likely not ADHD)

  6. Amy Myers Says:

    Carol,

    I emailed you privately on this but I copied most of it here to hear from others that may have some helpful suggestions… 🙂

    I saw you speak in Syracuse NY about 5 yrs ago and laughed out loud when you told the story of how you began calling this Blog “sizzlebop”. My son did the EXACT same thing during the week just prior to the conference. I bought your books and used many of the ideas from them but never pursued testing as I didn’t want him to use a label as an excuse. This past year I was advised to seriously consider getting the testing done to rule out or in the ADHD dx. OR to see if there was an Auditory or Visual Processing problem. I started this in Sept but haven’t been able to complete it due to financial issues. The final result is that if I want testing done I’m going to have to go through the local school district. (We have been under the leadership of a “Charter School” (homeschool group reporting directly to this Pastor who is also a social worker in NYS). We have not had to report to the district at all so we don’t even exist to them.

    I have (for obvious reasons) not wanted to go through the school district for testing but I am having brain surgery in two weeks and don’t think I’ll be able to continue homeschooling next year. I’m so torn about it. My son, the 13yr old, is the “challenging child”. I tried some of the things to help him that you suggested (like the learning carol) and movement games as part of our learning process. He does seem to daydream while “blocked out” though. With games he tends to get overly excited and gets in trouble. Maybe I’m just not patient enough or not firm enough with him. I don’t know. Can you tell from my rambling that I am also a little “distractable” 😉 sorry…

    I keep hearing your words in my head that I need to just keep reminding him to stay on task (not harshly but just redirecting) but I’m now feeling like I’m being a NAG ! It takes him over an hour to complete 20 math problems b/c he gets sidetracted a lot. I keep asking every 5-10 min or so.. “what number are you on”. He won’t/can’t write a complete sentence for the most part. Our curriculium has Country Summaries that require things like population, currency, government type, history etc… Each section requires a few words to up to a paragraph. This task is like pulling teeth. Reading the short summaries for him is not difficult but reading a novel or biography is impossible. He loves to listen to books on tape or read graphic novels though. I’m just out of my mind on this.

  7. Amy Myers Says:

    Follow-up comment: I spoke to a special ed teacher tonight who said her son has ADD. They said he benefits from caffeine to help him. He is now in college. He is very bright but has trouble concentrating.

    Has anyone else tried caffeine with their kids? I’ve avoided it over the years but lately I’ve been letting him have coke once and a while to see if it helps. I’m not sure if it is or not. Thought I’d try Mountain Dew or those “energy shots”.

    I look forward to hearing others experiences..
    Amy

  8. Holly Nelson Says:

    I can see all the sides of this story and it is good to know what you are getting into, prior to going there. For us, diagnosis has continued to be very important for proper therapies, training, and accommodations. As a teacher and home-educator, I continue to be around parents who are not getting help with their obviously struggling children. I am not sure it is about the label as much as it is about finding out what, in fact, is wrong. That can mean pursuing quite a number of professionals for help and to NEVER accept the first diagnosis. It can also mean being in complete charge of how the child is managed and educated, and never accepting anything for your child that doesn’t feel right, or sound right. Part of that, means that parents must sometimes come out of denial and admit that there is something “wrong”, which I have found LOTS of parents that resist this, as it might be attributed to their genes. I have also found that concerning military and driving, that there are good reasons that there is hesitancy in agencies in dealing with ‘brain’ issues. Parents are not always wise enough to make these kids wait to drive or enter the military and use the non-label thing as a way to get these kids doing things they have no business doing yet, and putting other people’s lives at stake. The problem isn’t really the label, as such, but all these other issues. If a label made the parents, the child, the school district, the military, and the future employer wiser, than that would be great. But it doesn’t. The label is just one thing in a big field of issues that all need to be attended to. As a parent and employer of learning different kids and adults, I could only wish that some of the people I have employed had any idea that they had adult ADD or ADHD or dyslexia! Because we are a small company and often become quite close to our staff, the conversation does come up, eventually, as the weakness causes employment issues, and usually to the relief of the employee. They had always wondered what was “wrong” with themselves, and no one ever took time to help them. Is that about a label, or is that about helping people with issues know themselves, their strengths and their weaknesses and how to advocate for themselves?

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