should I tell my ds about his ASD diagnosis?

[vocalise]

I've posted here just a few times. Ds (9), who up until yesterday had a diagnosis of AD/HD and SPD, has now been identified as having mild PDD-NOS and a grapho-motor learning disability in addition to his previous diagnoses. On top of all these, it turns out he is highly gifted (99.9th percentile).

So... while I was preparing myself for the gifted and ASD possibilities, I do have a few questions for those who've BTDT.

Right now, ds is aware of his AD/HD. He takes medication for it, and knows that his dad had it, that his older half-sister has it, and that it comes with many strengths as well as challenges. We speak of it in terms of his "supercharged brain" that is like a high powered car with sleepy brakes, a la Edward Hallowell.

I'm concerned about telling him about the ASD diagnosis. Partly because it's so mild, I guess. Maybe this is denial on my part, but I'm worried that he'll incorporate it as part of his identity, and that it will turn out that he doesn't actually have it, or that the DSM will change and PDD-NOS will no longer exist. Where will that leave him as a teen or adult? Thinking for years that he has an autism spectrum disorder, and then being told his diagnosis isn't valid?

If he didn't already have the AD/HD framework for viewing his challenges, I guess I'd feel less anxiety about sharing the ASD diagnosis. I'm just struggling with how he'll incorporate all these labels into his sense of self, kwim?

I suppose I should mention that I already feel ds has a lot to chew on with regards to stigmatized elements in his life. He's the son of a single, bipolar mom, his dad died of a drug overdose, and he has AD/HD. It just already seems like a lot to me!

So, I guess my question is... WWYD? How would you frame this for your child, or would you wait until they were older to mention the actual diagnosis?

[RiverTam]

PDD-NOS is probably going to go away as a diagnosis in the next version of the DSM. It will be folded into autism disorder, as a single category. (That's the proposal here.)

The new proposed criteria are here: http://www.dsm5.org/ProposedRevision...on.aspx?rid=94

[vocalise]

Yes, thanks, Rivertam. That's what I meant when I said I was worried PDD-NOS wouldn't be a valid diagnosis anymore. I'm worried that he won't meet the criteria for ASD once the DSM changes, and if that happens, is there any point in him considering himself to be on the spectrum now?

[shelbean91]

I think the PDD-NOS dx will become an autism dx, not be eliminated. I think I'd tell him as an FYI, but also let him know it doesn't change what you're already doing.

[joensally]

How self-aware is he? DS is extremely self-aware and I follow his lead on these things. He knows he has SPD, ADHD, allergies, written output issues, motor planning issues, is gifted and is neurologically atypical and likely not on the spectrum but that it's been suspected. He knows these things because he's wanted to discuss them, because he's acutely aware of his differences, because he's been involved in multiple evaluation processes, because he's had a very different educational route than his older sister. It was also unavoidable when he started taking social skills groups and special needs gymnastics.

I don't know if you need to explictly tell him he meets the PDD criteria - I would decide if it's useful to him or not. He knows he had an eval and you can couch the conclusions in whatever way seems productive for him to you. As a family, we have always embraced differences and valued uniqueness, so DS is just a wonderful extension of this . I'm not trying ot oversimplify this as there have been painful experiences and periods along the way, but DS knew he was really, really different and needed to understand why (with or without the full diagnostic labels).

ETA. Coming back to add that some of this was taken care of by the school. He overheard or was told by school staff the names of some of his issues.

[RiverTam]

Originally Posted by shelbean91

I think the PDD-NOS dx will become an autism dx, not be eliminated. I think I'd tell him as an FYI, but also let him know it doesn't change what you're already doing.

The transition is going to be confusing. Really, really confusing. Most people with PDD-NOS will fit within the new AD diagnosis. There may be some people who don't meet the new criteria, and they may get a new diagnostic label. It will be up to the clinicians to decide whether to fold their existing PDD-NOS patients into the new category automatically or whether to reassess them. There are plenty of people who are going to use their old diagnostic labels and not get a new assessment. Here in Illinois, people will still need a DSM-IV label because it effects their ability to get insurance to pay for TX.

What if you tell him that he has some traits of ASD, and you're working on those traits, without telling him a specific diagnostic label?

I'd tell him something, for sure. My brother was dyslexic and had therapy and tutoring for it, but my parents never told him what the problem was. He thought he was just stupid, until he was almost 30, and had to pick up his high school records to get his immunization records.

[Linda on the move]

Originally Posted by vocalise

Maybe this is denial on my part, but I'm worried that he'll incorporate it as part of his identity, and that it will turn out that he doesn't actually have it,

My DD is 13 and *had* a dx of Pdd-nos until this spring, when it changed to Asperger's. She is also gifted. She knows her dx, knows other kids with her dx, and has read a few books about it. She's very comfortable with it.

She is bright enough and different enough to know that she isn't like other people, so understanding that she is completely normal for someone on the spectrum is reassuring to her. There's nothing wrong, everything is OK. Without her dx, she's just the weird kid.

My DD already knew that these traits were part of her identity, she just didn't have a name for them. Being open and honest with her has made it far simpler to talk to her about things. It didn't change her identity, it just her identity OK.

It made it safer for her to try new things, like a outdoor day camp this camp. She was willing to go with her "autism golden pass" (as we joking refer to her note from her doctor). It means that wherever she goes, the adults know that sometimes she gets overwhelmed and needs a quiet place and down time, and some things are scary for her that aren't for other kids so she should be allowed to opt out with no pressure. She wouldn't have gone to the camp with this.

I don't feel like there is a stigma. Have you read anything by Temple Grandin? VERY positive stuff.

She didn't have any issues when her dx changed. Her dr. explained that the two dx's are very similar, but the new one is more specific, so when it's on a form or whatever, people would understand better what she is like. No biggie.

I don't know what is best for your child ~~ just sharing how it has worked out for my DD!

[AnalogWife]

I read another online discussion led by adults on the spectrum (mostly aspergers) and the general overwhelming consensus was to TELL YOUR CHILD. Most of them said that once they knew of the dx they were much more patient and accepting of themselves.

After I read that, I took an online ASD test, to see what it would say about me. I had a mostly happy childhood but I silently dealt with quirks and discomfort, now that I'm an adult I can sense some "weird" and anti-social things about me still...and wasn't surprised when the test said that I was "likely aspie." I realize it was just an online quiz and I don't consider it an official dx, but it made me think....what if years ago I was given this "get out of jail free" card, a card that explained how hard it was for me to fit in or figure people out. I internalized it for about a week, at first it was very, very freeing, but soon enough the lines became really blurry, what was aspergers, what was just typical human nature. It was really tough, but I have to say.......it boosted my confidence a bit when I could accept small differences, differences that held me back for soooo many years. I do believe I could have been spared a lot of child/adolescent/early adult pain if I had this sort of knowledge about myself.

My DS is 3 and has AD, telling him today would be like telling a brick wall (not that he's a brick wall, he's very animated, but for someone who hasn't really shown that he knows what "sad" means, this topic is just way out of reach) but based on the emotions of the ASD adults I read, I do believe I'll be telling DS once it's time. GL with your decision!

[AnalogWife]

Originally Posted by vocalise

I



I suppose I should mention that I already feel ds has a lot to chew on with regards to stigmatized elements in his life. He's the son of a single, bipolar mom, his dad died of a drug overdose, and he has AD/HD. It just already seems like a lot to me!

I'm sorry your little guy has already had to deal with so much.

So, I guess my question is... WWYD? How would you frame this for your child, or would you wait until they were older to mention the actual diagnosis?

I already responded earlier, but missed this part. I too wonder just *how* the convo goes or should go. "Son, please sit down. You have _____." I'm hoping my DS is young enough that we can "braid" it into his life as he becomes more aware, but how? I'd be interested in the answer to that too, because like you said, just blatantly saying it seems like slapping a label on the child, I'm interested in how it becomes not a crutch.

[Lollybrat]

Our situatuion is a little different, but I'll share what we have done.

DS is 6 and was diagnosed with autism just after he turned 3. (His orginal diagnosis was PDD-NOS and it's now autistic disorder, but we've generally just called it autism). DS knows that he has autism. We have always used the word around him. He started reading when he was 2 and we've had books and articles about autism the house. We go to autism events and are active in our local autism support group. So really, I doubt that we could have hidden the word from DS even if we had wanted to.

At this stage of his development, DS does not fully understand what autism means. He knows that autism makes his brain work differently than other kids. He knows that autism is what makes some things really hard for him and other things really easy. He knows that many of the kids we know from school and playgroup have autism too. But he doesn't really understand all of the differences. He doesn't yet realize all the differences between how he thinks and how other kids think. He has started to notice that other children play in different ways than he does (and they play together), but he doesn't quite understand why they do. Also, he's starting to realise that other people use verbal language differently than he does, but he doesn't quite get what the difference is. It isn't that he's realising that he has autism, as much as it is that he's starting to realize that other people DON'T have autism. But right now it's the start of a very basic understanding. As DS grows, it will be our job to help him grow into an understanding of what autism means.

DS recently learned about Temple Grandin, and was thrilled to discover that people with autism write books. It was very exciting to see him realize this. I'm glad that Dr. Grandin and other adults with ASD are abvailable as positive role models for him.

DS is learning some basic skills to help him cope with his autism. He knows that he had to work hard at the things that do not come easy. He is working had to learn how to recognize and regulate his emotions, his voice (volume), his activity level, etc. He is learning how to ask for a sensory break when things get overwhelming. He is learning to go to his room when he needs quite time alone. These are hard lessons, but we work on them constantly. Autism is not an excuse for bad behavior, but it does change the way we teach things and how we approach certain situations.

It's hard to explain, but I kind of base my approach for teaching DS about autism off of how my parents raised me in the knowledge of my adoption. I was so young when my parents intorduced the concept and the word adoption, that I don't remember ever being told it for the first time. It's just something I always knew. But I had to grow into the understanding of what it meant. I was probably about 7 when I realized that other kids were born to their parents and came into their families in a different way than I did. As a young teenager I started understanding that through the adoption process I had both lost a family and gained a family. It took me a long time to work through the complex, conflicted feeelings involved. Throughout, my parents were there to help me, guide me, and support me. They could not completely understand what I was feeling because they themselves are not adopted, but they understood that my feelings were valid and that there was a certain journey I needed to take (searching for my birthparents). Understanding my adoption was a slow process that took a long time and my views on it changed several times as I grew and matured. I expect that DS will experience something similar in his own understanding and view of his autism as he grows up.

[nextcommercial]

I had learning disabilities that I knew about a little. But, I only knew as much as I needed to know.

What I was told was "This means you have to work harder than all the other kids just to get the same things that come easily to them". I was never given the green light to do less or have an excuse to behave differently.

But, I did understand that things would be harder for me, and my grades will be lower than my friend's grades, even if I worked harder than them. So, that was good enough for me. It sucked sometimes, but I was always aware that my expectations were higher than the next kid's and I had to deal with it.

I don't think I would have wanted to be outwardly labeled. I'd have rather been the "weird kid" my whole life, or "the slacker" than the kid with learning disabilities.

[Trac]

*subbing*

We're going through this right now, too, and I'm also struggling with exactly what, how, and when to tell. I did tell DS (8) a bit about his PDD-NOS (which I referred to as Autism Spectrum) diagnosis, mostly because I didn't want him to overhear it by accident. He doesn't really seem to be aware of his differences yet, and denies that there are differences. He didn't want to talk about it at the time, but I know the questions will come when he's ready for the answers! Just wondering...can anyone recommend a good, positive book or two for him to read? Kind of to just have laying about?

[vocalise]

Thanks so much for your responses, everyone!

Originally Posted by Trac

*subbing*

We're going through this right now, too, and I'm also struggling with exactly what, how, and when to tell. I did tell DS (8) a bit about his PDD-NOS (which I referred to as Autism Spectrum) diagnosis, mostly because I didn't want him to overhear it by accident. He doesn't really seem to be aware of his differences yet, and denies that there are differences. He didn't want to talk about it at the time, but I know the questions will come when he's ready for the answers! Just wondering...can anyone recommend a good, positive book or two for him to read? Kind of to just have laying about?

After having had time to think about it, I definitely intend to tell him something about the new diagnosis. However, like your son, Trac, ds doesn't seem to be all that cognizant of his differences yet, and he may have a hard time conceding that he has any challenges at all! This could prove to be a problem once therapy comes into play.

I think I'm going to avoid mentioning PDD-NOS to him, and refer to ASD. And I'm thinking of framing it as "a unique way of perceiving the world, which comes with both strengths and challenges" or something along those lines. I'll tell him that, while his way of seeing the world means he is able to come up with ideas and solve problems that other people may not be able to, it also means that he doesn't always perceive some of the things that others do, like body language and the perspectives of others when they differ from his, for instance. For him, it's also behind his desire to rock and hum and speak so loudly--these actions help him to feel centered. It is also why it's sometimes so hard for him to deal with surprises or changes in his schedule. It's why he doesn't care what other people think of him if he goes without bathing or wiping his mouth.

I'll tell him that, just like everyone else in the world, he can make good use of his strengths and get help dealing with his challenges. And I'll explain that he's going to meet some new people who are experts at helping people with the same challenges as him.

I'll explain that he won't always want to learn the things these people and I are helping him to learn, but the skills he will learn will be useful for the rest of his life. Just like it can be very frustrating to learn to write, but once you know how, you can use it for all kinds of things whenever you want, or whenever you have to. You might not want to put in the effort to learn to write when you're five, for instance, but once you do, you will be capable of getting good grades in school and communicating with others over the internet, writing letters, and recording your ideas in stories, etc. Same goes for things like learning how to read other peoples' body language; it may be frustrating to learn, but it will help you to sustain quality friendships, make a good impression on new acquaintances, ace job interviews when older, etc., etc.

Something along those lines, but I'm still chewing on it... That sounds very lengthy, but I mean to weave it all in over time.

The other part with him is the giftedness, so I'm thinking a simple way of explaining it in tandem with the ASD might be to say that his brain puts so much energy into thinking about ideas and information that it doesn't always allow him to notice things like other people do (personal space, body language, when his tone of voice is inappropriate, etc.).

Any thoughts? Other BTDT experiences? I'd love to hear them.