Gifted Issues Discussion homepage Forums Twice Exceptional What to share with DS regarding diagnosis

My DS10 HG/SID/ADHD/Anxiety/Depression. We have finally gotten to see a psychologist who is helping with us with my sons host of issues. He was Diagnosed ADHD in 1st grade while still in public school. We now homeschool and while he is technically in 5th, we are working in all subjects at 7th+. The rest of his conditions have been formally diagnosed within the last year and the Aspergers just a few weeks ago. I thought he understood this when we were in the Drs office but just yesterday he heard me talking to his Grandmother and he said, "I have what?"
I told him that yes, he had aspbergers and I thought he was going to cry, (again). How much do I tell him about his conditions? He has so many issues. We're working with a therapist for his anxiety and depression, also a Psychiatric Nurse Practitioner for ADHD and depression. (We are in a very rural area and have lost our child psychiatrist, the closest is now 2 1/2 hours away) I started homeschooling him last fall because of his severe anxiety at school. I am sometimes just lost, and depressed myself.

I still haven't directly told my son about his ADHD (he is also ten) because I don't want it defining his perception of his own limitations (in other words, I don't want him to feel like it limits him). Instead we frame it like "areas in which he needs to practice/grow/develop" and that we ALL have such areas, diagnoses or not. My gut tells me this is what is best for him.

On the other hand, friends of ours have been very open to their son about his ADHD diagnosis, and it works equally well for that family. They told him long before he turned ten. He is also medicated and my son is not, so there may have been more need for a specific explanation, although they could have told their son the meds were vitamins, or hidden it in his food somehow. In any case they chose to be direct and forthcoming and I've chosen to think of the diagnosis as a sidebar, or a technicality, rather than a categorization, and each decision has worked out well for each child.

Anyway, listen to your gut, and if you're unsure, then wait or dispense the info in small doses. You know your son best, so follow your own instinct. I don't think there is a right or wrong in this situation.

Hi - You sound like you have such a bright little guy! I wonder if you could help him come to terms with his brain by recasting things from "he HAS" Aspergers/ADHD to "he IS" an Aspergers/ADHD kid. When you "have" something, it sounds like a disease. When you "are" something, it's just who you are. AND - this is the important part - the braining wiring that makes him who he is has some HUUUUUGE benefits and strengths associated with it.

The brain differences make things pretty tough for him (and many of our kids) in the early years. But as he grows - and he learns what strengths and weaknesses his brain differences give him - and he learns how to manage the weaknesses and take advantage of the strengths - he will become strong and happy and really sort of powerful!

When my DS7 is having a tough time with something arising out of his brain differences, I tell him he has to work on it. His responses come from who and what he is, but he has to own that. So I'll say - "Look, your body is more sensitive than most other kids. So some sounds that most other kids might not even notice will feel awful for you. So you naturally get more upset than they do. But you can't lash out over a little noise (like a high-pitched girl's voice singing "Let It Go" yet again)." [Then we talk about things he can do to get over the upset and avoid it in the future.]

That's not the end of the conversation though. I also add: "BUT - don't forget that being so sensitive will be a huge power for you in the future. You will be able to notice things others will never be able to see. You will be able to figure things out that others cannot understand - just BECAUSE you can notice these things. Don't try to make yourself less sensitive. That's one of your powers. You just have to learn how to manage."

And FWIW - have you read the Percy Jackson books? Percy is dyslexic/ADHD, has been kicked out of multiple schools, and by the way is a demigod (Poseidon's son) and is learning to harness his own powers. DS loves, loves, loves these books. He hasn't talked about it, but I think it's in part because of Percy and the other half-bloods having powers that the ordinary world either doesn't see or else sees as bad.

Anyway - I hope the New Year holds good times for you and your family,
Sue

Careena, it sounds like you have done wonders to get this far, and have already accomplished much. As CCN reminds us, every kid is different, and you know yours best, so there's no right answer to your question. That said, what I love about this forum is the way people get me seeing things from so many different perspectives; it really helps me see where different pieces may fit with my own children.

With your son already dealing with anxiety and depression, one lens for you to consider your question might be: "What information may help him better understand his challenges, and reduce the anxiety and misery of being different, or of certain things being hard for him?" Sue - who has shared much hard-earned 2E wisdom on this forum - so perfectly describes how important it is to help him see the *strengths* that come from his differences, and not only the challenges.

Both my kids have hit very high anxiety levels in the classroom when their 2E needs were getting seriously in the way of their ability to function in class. My recently-diagnosed ADHD/ dyslexic daughter (8) is now instead rather smug about her demi-god status (thank you, thank you Percy Jackson!!). Her challenges are "mainstreamed", and she has even discussed her reading issues with friends. Openness is making it easier for her teachers to help her, and for her to accept differentiated approaches without feeling incompetent. Being able to talk about the ways her brain works differently has also been invaluable in engaging her in the things we need to do to help her. For example, our reading remediation program is long, tedious and painful (but wow does it work), but we talk about how we need re-learn how to read using a different method that accesses the needed part of her brain - and she gets that. And she can see her reading skills changing, so she sees that doing things differently is important and it works.

My kids gifts are part of their difference, as are their sensitivities, intensities, anxiety, and atypical ways of learning. Not better, not worse, just requiring different ways of teaching and learning, because they experience the world in different ways than most people. For them, the more they understand their differences, the less they are likely to see themselves as stupid, bad, or just wrong to not be like everyone else. So I understand the fear of labels being limiting - in the wrong hands, they undoubtedly can be - but they can also be remarkably freeing. It's not "I'm x, so I can't do this." It's "I'm x, so I will take a different pathway to get there. And my "there" may well end up being a unique and extraordinary place, as will the places I visit on my way".

I hope you keep talking to the forum, and this group can help both you and your son feel less lost, and more able to find the right ways forward for both of you.

I can't add anymore to this, but I just wanted to give you a virtual hug...

You've received excellent advice already - and all of us will have different perspectives on this. We told our 2e kids about their diagnoses as soon as we found out - but that's just us, our family, and we're dealing with a different set of diagnoses, although my 2e ds was dealing with severe anxiety at the time he was initially diagnosed 2e. FWIW, a few rambling thoughts for you that might not have been mentioned above:

1) When I have a question like this, I like to think ahead 10 or 20 years, and think through how my child will possibly feel knowing we knew about the diagnosis at a certain time but *didn't* tell him at that point. It might all be fine - your child might totally understand your reasons for having done so, but I had a concern that my child might instead feel like I'd withheld important information, and that weighed in my decision to be forthcoming about the diagnosis.

2) The diagnosis may be harder for you to process than for your child - for our kids, it was a relief. Not a happy thing at all, but definitely a relief. They understood that there wasn't something inherently *wrong* with them, and they were able to ask questions related to the diagnosis that helped them understand their differences in a logical way, rather than comparing their abilities to other neurotypical kids and coming up short in their own minds.

3) Our kids already felt different, so knowing their diagnosis didn't give them anything extra to stress over - they were already stressed. Having somewhere to look for answers actually eased their stress.

4) Your son is going to hear the word Asperbergers somewhere, sometime, most likely more than once. He might hear it in the context of someone referring to him - and if that happens, I would want to have been the first to have told him. It sounds like that's already happened with your ds, so the door's been opened and walked through - I'd think at this point in time the best thing to do is walk all the way through it with him, and help him by finding him books or looking up answers to questions about Asperbergers etc. He also might hear it in terms of just general things like a radio program or tv show or whatever, and he might find signs of commonality, things that ring familiar for him - those are good things! But he can start looking for and finding those things now with a full knowledge of what his diagnoses are.

5) I agree with the idea of emphasizing the strengths that come with a diagnosis, but I also see a very narrow line with respect to this - I am not sure I'll explain it well, but hopefully this will make sense. I'm going to frame it from a dyslexic's point of view (only because I have a dyslexic dd and a dysgraphic ds). There is a book called "The Gift of Dyslexia" as well as a lot of focus "out there" (Eides etc) on the strengths shared by dyslexic people. It's true that dyslexics tend to have strengths in certain areas, and it's important to recognize those strengths, but the reality is not all dyslexics view dyslexia as a "Gift", and for all the incredible areas of strength they may possess, it isn't easy *at all* to be dyslexic in our society. From my perspective, it is what it is, and you need to acknowledge both the challenges and the strengths. You'll probably find initially you'll need to *really* focus on the challenges and how to accommodate/remediate/etc - and that's really important to do, so that later on your child will be able to really live up to his full potential and enjoy his ability to pursue the areas he is strong in.

6) My kids also don't tend to think of themselves as "being" dyslexic/dysgraphic as much as they see themselves as "having" dyslexia/dysgraphia. They (and I) totally understand the idea that "having" makes it sound like a disease, and we've heard quite a bit of discussion about the "having" vs "being"... but they also don't see themselves as being defined by their challenges, hence they don't refer to themselves as "being" dyslexic/dysgraphic. I've heard them use both terms when they need to refer to it.

Last thing - as I mentioned above, my ds was *extremely* anxious when he was first diagnosed - so anxious he was having panic attacks, imaging bad people breaking into our house, afraid to go into his classroom at school, so anxious he was slipping into a clinical depression. Having the words to put to his diagnosis and seeing that the adults he trusted (primarily his parents at that point) immediately started making a few changes happen for him at home and at school based on that diagnosis helped ease his anxiety tremendously. At 10 years old, I'm guessing your ds has enough personal insight that he can help be a part of thinking through - how to accommodate "x" so that I feel better, or something else works better in my life, etc.... so being able to discuss his diagnoses with him might actually be a very helpful part of the process of working toward accommodations that are successful.

I'm also sending you and your ds a huge virtual hug. I hope that as you learn more about his challenges and help him with accommodations his anxiety will ease a bit -

Best wishes,

polarbear

Everything polar bear said, but especially that.

Thank you for kind words and consideration, it is so helpful to get another perspective, I sometimes feel very lost! Must look into Percy Jackson. We need to go to the library this week so I will look for those!

Thank you for taking the time to reply! It's nice to know I'm not alone!

Yes yes yes. ITA with Polar.

Ideally, conversation about challenges should be part of family life. It's important for the child to know the challenges are not his fault, that there's a name for the challenges, and that there are ways that the challenges can be overcome or worked around.

Pretending it doesn't exist can be quite damaging IMO.

DeeDee