PDA

View Full Version : Told Hurricane he's probably Aspie



MarkInMD
12-10-2010, 11:32 PM
Well, after some deep deliberation between DW and myself, we told DS1 (Hurricane) that we're pretty sure he's an Asperger kid. DW has a lot of experience with the autism spectrum in her job as a pediatric OT, and she'd just gone to a conference on autism where it became clearer than ever to her that Hurricane was on the spectrum.

We had held off telling him because we were unsure how he'd react, if he'd turn it into an excuse for why he had focusing issues or what, because he does have a tendency to shift blame. At first he was a bit upset, but when we explained to him that it changes nothing about how we teach him, treat him, or anything, he realized that it explains a lot about how he thinks and reacts to situations. It's a big relief to know that he's all right with it. Hope it continues that way.

We still have no plans to get an official diagnosis, because there's really no question in either of our minds anymore. I notice that a lot of you have Asperger's kids as well, and was wondering what your experiences were with getting a diagnosis and/or telling your child about Asperger's. Would you say it's generally a positive for them that they know about their diagnosis, or do you not inform them of what Asperger's really means? Just curious about how everyone has chosen to handle this.

Busygoddess
12-11-2010, 02:21 AM
Neither of my kids are on the Autism Spectrum. However, I'd assume that it's similar to other conditions, in this respect at least. I mean, knowing you have a condition & understanding the condition, it's symptoms, causes, and what it really means to have that condition, usually helps.
My dh has ADHD & Dyslexia. My ds has ADHD. My dd had ADHD & Juvenile-Onset Bipolar. I have ADHD. For all of us, knowing was important. I don't allow the kids to use it as an excuse. They've tried, believe me, but I don't allow it. Knowing that you're fundamentally different from everyone else is hard when you don't know why. I firmly believe that knowing what you have is only half of it, though. That needs to be followed with info on how to deal with it. I don't know much about Asperger's, so I don't know how much of the behaviors can be controlled. We work very hard with our kids to teach them how to improve their attention & focus, how to improve their impulse control. With Juvenile-Onset Bipolar, they tend to swing between mania & anger, instead of mania & depression, and they swing fast. So, we've made it a priority to help dd deal with her anger, learn to control it, and we're working on learning to know when the swings are coming. Hopefully, that part will be easier as she gets older & they slow down more.
Now that your son knows what he may have, my advice would be to help him truly understand what Asperger's is & how to deal with it, improve behaviors, and helping him accept this as a part of who he is. The acceptance thing seems to be the biggest issue for most people, whatever the condition is. The more accepting & understanding the parents are, the easier it is for the child to accept it and to come to terms with who they are, condition & all.

Pefa
12-11-2010, 08:10 AM
Often I think we tend to homeschool kids who don't fit into the schooled mode and aspie's definitely fit that bill. (Although for my ES it was purely geography and my dislike of packing school lunches that led to hs'ing.)
My husband refuses to allow that there's anything different about either himself or B1, (I'm not sure why but there you have it) so I've worked with B1 with the knowledge but using different language.
One of the interesting questions is when do you mention to a teacher that learning style may impact teacher student relation? I asked my SIL, a riding instructor in NC who teaches intermediate and up riders, what she wants to know about new students. She allowed that if a parent said "My kid is an aspie." that might put her off, even though one of her current students definitely is. When SIL approached this student's mom to try to get some kind of handle on student's thought processes (this is a 17yo who is looking to go to an equestrian college in the near future so some of the problems my SIL saw needed to be addressed) she got was "Well, she has trouble with geometry." Which SIL already knew. SIL automatically adjusted her teaching methods, because she's a well paid very good private instructor and one of the things she does work with individual differences. It would be harder to make these kind of adjustments in say a large publicly subsidized summer day camp for low income kids (that a different SIL has run for the last 12 years) where 300 kids a week are given the best experience possible.

When B1 was smaller I didn't bother, lots of his aspie stuff can be chalked up to little kid behaviors and it was more of a wall than a tool. Now, it depends. B1 knows he's wired differently than most of us and this brings different abilities and problems. So we'll talk about what might happen and decide case by case whether he wants my help or not. For B1 and myself it's not an excuse it's an explanation that puts the burden solely on B1: just as I forget to feed him because I'm not hypoglycemic, the rest of the world isn't going to understand why he's walking like a penguin in crowded settings. We don't always respond positively to the different, so B1 just has to be aware that his self-protective mode may result in more attention rather than less. May not be a strategy that works for anybody else, or for an Aspie w/less control than B1, but it's helped him a lot.

outskirtsofbs
12-11-2010, 10:37 AM
As of right now, I don't want my DD to know anything about Aspberger's. She's never been taken to a Dr., she use to do the flapping (from age 2-almost 6) and now she does the hand-wringing w/ facial expressions. So I pretty sure she is on the sprectrum. She was in the Talented & Gifted program so I am thankful that she doesn't have problems learning. She already thinks all kids hate her so I don't want her to think "Oh, that's what's wrong with me, that's why no one likes me"--I know that's where she would go with it. Does your son have problems with sleeping, Mark? Man, I can't get her to go to bed for anything and she is deathly afraid of the dark and has major anxiety. I don't know when we will tell her, but she has slightly verbalized that she is "different". I often have wondered if she got it from me--I was kind of a (what I call) "quirky" kid, never slept, didn't really have alot of friends. Anyway, I just want whats best for her and except for the isolation, HS is better than PS for her.

MarkInMD
12-11-2010, 11:16 AM
Thanks for all the responses. It helps with perspective.

Brandi, what you describe of your daughter is eerily similar to our other son, who's 5 and still in PS for now. He definitely goes from extremely happy to extremely angry on a moment's notice. Probably some ADHD there, although it's hard to tell because by all reports he's not like that in school, just around us. I think his teachers would be shocked by some of what goes on here, as his grandparents were when they first saw it. Tried a lot of different strategies all along the negative-to-positive reinforcement continuum, and nothing sticks for longer than one try. At this point I'm just hoping that maturity calms him down somewhat, which might happen because Hurricane had more anger issues when he was a little younger, also, and those are by and large better. As for Hurricane, I think he's already accepted it and has even recognized that a friend of his who's also homeschooled is probably on the spectrum as well, although his friend's parents haven't discussed it with their son yet and may not for a while, if ever. So we've stressed that talking about it is a very personal decision and he has to respect his friend's family's wishes not to talk about it. We're still on the fence about how much we want to discuss it with friends and family ourselves.

Pefa, I think B1 and Hurricane are pretty similar in their level of functioning. The friend of his I mentioned above would probably get a few more curious looks from strangers about the way he acts than Hurricane would. Our guy blends in pretty well until a subject he's got an opinion on comes up, and then you'd better be prepared for a doctoral dissertation on that subject. His friend might not even acknowledge that you had your own topic and will just keep going with what he wants to say. The way DW presented his condition to him was that in a lot of ways, it's a gift, because he has a laser-like focus on his favorite subjects and has such a great memory for details which is likely to make him an expert on whatever he chooses, but with that gift comes the cost of not always knowing how to read another person's nonverbal cues or understanding the steps to spreading jelly on toast and all the body mechanics involved. But he's known that about himself for a while without knowing the label to it, so I don't think it bothers him. Which is good, because I was concerned it might.

Olive, I can understand the tics, because Hurricane's were (and still are) scratching at his nose and fiddling with his shirt. And yes, he does sometimes have sleep issues. He'll go to bed on time but either won't fall asleep for a while or wakes up at odd times. It's not every night, but maybe a couple times a week. I think that Hurricane may have inherited this from my side of the family, although not necessarily from me. My older brother is more than likely on the spectrum, too, because a lot of Hurricane's behaviors remind me of my brother's when we were young and even now. As for Tornado's anger issues, I don't know where those come from. He's more of a mystery that I hope becomes clearer with time.

Again, thanks for the input.

dbmamaz
12-11-2010, 02:53 PM
I just have to respond to the 'oh, thats why i'm different' - as I started reading more and more about my son's issues, I recognized myself more and more in them - especailly the descriptions of gifted asperger girls almost brought tears to my eyes. I have, all my life, felt horrible about myself because 'you're pretty, you're smart, you're healthy, you should be highly successful and have lots of freinds.' Recognizing that I probably did have bigger issues going on than i realized made me feel like, no, i'm not a horrible loser who cant get her act together, I've actually done really well considering. I cant imagine how a person could, esp as they get older, appropriately plan for their lives and ask for appropriate help, if the truth about themselves is hidden from them. But i'm obsessive about truth, so thats just me.

MarkInMD
12-11-2010, 03:44 PM
The more I learn about Asperger's through DW, the cooler I think it is. The way I see it, whatever Hurricane decides he's going to want to do with his life -- which will most likely be in a scientific field like meteorology or astronomy -- he's going to be absolutely phenomenal at it because he throws himself into it completely. So what if he only has a few close friends in his life? That's all he wants and it's all most of us really need, myself included. So no, he's not going to be a horrible loser, and neither are you. We had always planned on telling him the truth at some point. I was just concerned that 8 years old might have been a bit early. But I should know that kids are more resilient than we give them credit for.

dbmamaz
12-11-2010, 04:10 PM
Yeah, i forgot he's 8 . . . and if he's not wondering about it yet, i wouldnt say anything. But my concern is, if you DO have a child who is wondering why they are different, and you as a parent say "no, honey, you arent any different" when, in fact, you know the child has a dx of something that makes him/her different . . . well, i dont see that as helpful.

allisonsracquet
12-11-2010, 04:44 PM
I am so glad this is being discussed. My son is 12, and I haven't told him yet...I didn't really know how to bring it up, and I was scared also, that he would be sad, and feel different. What I am realizing is that he probably already feels different, and knowing more about it might help him make sense of his feelings. Intersting discussion!

MarkInMD
12-11-2010, 05:07 PM
Yeah, i forgot he's 8 . . . and if he's not wondering about it yet, i wouldnt say anything. But my concern is, if you DO have a child who is wondering why they are different, and you as a parent say "no, honey, you arent any different" when, in fact, you know the child has a dx of something that makes him/her different . . . well, i dont see that as helpful.

Agree completely with not saying "You're not different" or whatever wording you choose to make that point. Hurricane was starting to wonder, I think, because DW works with lots of kids on all parts of the autism spectrum and he hears about them occasionally when she discusses her work day. He no doubt saw some of himself in her descriptions of them, although most of those kids are not as high-functioning as he is. He was fully aware he had focusing issues and would sometimes show signs of depression. The big concern we had was that the depression, left to fester without an explanation, might make him spiral down as the years went on (there is a history of depression on both sides of the family, although not with me). He's 8-going-on-30 in a lot of ways, so I should've known all along that he'd handle it well. Generally he's happy, but like any kid, he has his down moments. Those downs just seem further down than they should be at that age.

Allisonsracquet, it's a very personal decision to make to tell your child about it, and it's hard to just bring it up casually. I don't know your son, but as I said before, kids are stronger people than we think they are. He might be better with it than you realize. That's what happened with us. Let us know how it goes if you follow through with it. If not, that's okay, too.

dbmamaz
12-11-2010, 05:50 PM
I'm curious, tho, if you had a dx from a doctor? what did you tell your kids about why you were going to the doctor and doing whatever testing you did?

Kell
12-11-2010, 10:49 PM
Neither of my older boys is on the spectrum. However, LG has horrible asthma, and D has type 1 diabetes. Learning about their own individual issues, and seeing how they differ from other people has, it seems, helped them greatly in learning how to cope with their personal situations, and in seeing the ways they are actually similar to others, also. We have many conversations in our house to the effect of, "LG doesn't get shots when he eats, and I do. But, we both can _____." As much as I would love for them to not have to deal with these challenges in their lives, I have seen nothing but good things come out of talking about them, and discussing them in as great an amount of detail as they boys are interested.

InstinctiveMom
12-11-2010, 11:24 PM
I agree with the comments about 'knowing helps'. My oldest is ADHD and SPD; it's not an 'excuse' for how he is or what he does or doesn't do and helps him with following his body's cues. Asking for what one needs is a key to being happy and teaching him now how to listen to and read his body's cues is important, IMO.
~h

MarkInMD
12-12-2010, 12:22 AM
I'm curious, tho, if you had a dx from a doctor? what did you tell your kids about why you were going to the doctor and doing whatever testing you did?

If it's me you're asking, the answer is no, we didn't get a dx from a doctor. Honestly, we neither need it nor want it. My wife has worked as a therapist with Asperger's kids since before Hurricane was born, so her insight into it is at least as good as a doctor's, if not better. Believe me, when she first started suggesting the possibility with me about a year ago, I questioned whether she wasn't just projecting what she saw at work onto our son just because he might have a few similar behaviors. But that was before I knew what I know now. And it's not just a few similar behaviors, it's a lot of them. Little things, mostly, but added up they plant him firmly in the spectrum. The reason we don't want the official diagnosis (other than it would be wasted time and money on something we already know) is that too many people tend to see the label before the child. Kind of like in the field I'm in (narrating for the blind and physically handicapped). If a person sees someone with a visual or physical impairment, chances are the first things that person thinks about the impaired individual are about what problems they have, not about what is special or empowering about their condition. I know I've been guilty of that. What people see in my son right now is a vibrant, smiling, brilliant child who has intense interests and loves to share them with others. Throw the word "Asperger's" into that mix, and it's going to change the way a lot of people see him. They may not say so, but it will. We don't want that to happen. But if he chooses to tell people on his own, that's his business. Hope that makes sense.

dbmamaz
12-12-2010, 01:15 AM
Yeah, Mark, I remembered you saying you did not have an actual dx, but I was wondering about the other poster(s?) who said they had not told their kids yet.

I have decided to be very 'out' about my son's issues - partly after seeing so my people pushing the idea that mental health issues shouldnt be stigmas, and unless we talk about it, we are encouraging it to remain a stigma. So i mention it any time it seems appropriate. Like the other week at martial arts I was mentioning something about what a horrible day my son was having becuase he'd forgotten his meds and was crying and didnt want to come. The mom looked at me, confused, and said, but he seems like such a leader here. I said, oh, yeah, well, he's bipolar, so when he's good, he's really good, but when he's bad, its really bad. No, its not her business, but if i act like its normal and a part of everything we do, i hope (naively, most likely) that my attitude will rub off.

Busygoddess
12-12-2010, 01:37 AM
I have decided to be very 'out' about my son's issues - partly after seeing so my people pushing the idea that mental health issues shouldnt be stigmas, and unless we talk about it, we are encouraging it to remain a stigma. So i mention it any time it seems appropriate. Like the other week at martial arts I was mentioning something about what a horrible day my son was having becuase he'd forgotten his meds and was crying and didnt want to come. The mom looked at me, confused, and said, but he seems like such a leader here. I said, oh, yeah, well, he's bipolar, so when he's good, he's really good, but when he's bad, its really bad. No, its not her business, but if i act like its normal and a part of everything we do, i hope (naively, most likely) that my attitude will rub off.

I quite agree with this. I'm also rather open about all that stuff. I get very irritated with people's issues with 'labels' and their inability to realize that ADHD, Bipolar, Asperger's, etc. are a part of who the person is, not the sole defining factor. It's the same for 'good labels' and 'bad' ones. If you say Gifted, you get just as many negative reactions as if you say ADHD, Bipolar, Autism, etc. Too many people get so caught up in WHAT a person is, that they can't see WHO the person is. I choose to be open about who and what we are for two reasons 1) If people who have (or are otherwise affected by) these issues continue to stay quiet & hide it from the world, we have no hope of society ever becoming truly informed & accepting people regardless of which 'labels' they carry. 2) If someone is not able or willing to accept us for who we are, they aren't worth our time anyway.

Topsy
12-12-2010, 09:45 AM
We use the actual word "Asperger's" infrequently, mostly because he's never been OFFICIALLY diagnosed, and only has certain aspects of the syndrome. We concentrate on the actual difficulties, instead. We use phraseology like "that trouble you have with remembering faces and names" and "that problem you have with not filtering your speech". This works for us because we talk honestly like that about ALL our differences. Mom's issues aren't "ADD", (although certainly I would fit any symptoms list for that disorder), but rather "that problem I have with constantly getting distracted." And even our older son's Tourette Syndrome is spoken mostly of in terms of this tic or that tic. There are SO many things wrapped up in a "diagnosis" and I think it can become an excuse for issues we don't deal with. In our family, we just prefer to take each struggle separately...learn how to manage it, or compensate for it the best way we can, and accept that all of us have our own personal issues, and "disorder" or not, we have to find a way to accept our challenges and embrace our strengths.

dbmamaz
12-12-2010, 10:09 AM
Topsi, I totally agree with you that, INSIDE the family, we talk about individual challenges (but more like, yeah, mom isnt very organized or, just remember to breath and calm down. Maybe you should take a walk and we'll come back to this later. Or just accepting that when he's ticking too badly (is that spelled ticcing?) we have to call it a day (ok, that only happenned once, but it was really frustrating). But talking to people outside the house, it can help them understand that, no, this kid will not react like the other kids. It also helps on the sympathy factor . . . sigh.

Brandi, its funny, i'm probably more comfortable saying my son is bipolar than that he's gifted! Esp since he also has some processing issues - yeah, he's smart, but he doesnt seem to want to apply himself at all, so what difference does it make?

and my 7 yo? What on earth do I say about a 7 yo who will still scream and roll around on the floor any time he's supposed to be quiet, but when my husband said to him "If you and i are 40 feet apart, and every second, we walk 10 feet towards each other, how long will it take until we run in to each other" and the kids thinks for a minute and then says "One, plus One, is Two. TWO SECONDS!!" and just to be sure that wasnt a crazy lucky guess, I ask him how far apart they are after 1 second, and he yells "20 feet!". What on earth do I call that?

And i have avoided doctors for him - i just dont want to know. School (and my husband wanting more discipline) was what pushed me to dx my older boy, but he was also suicidal at the time . . . but might not have been if he wasnt in school.

MarkInMD
12-12-2010, 10:51 AM
All of us sound like we have very interesting kids that are challenges at times, but true gifts all the same.

I think others who have experience with groups of kids, especially in teaching kinds of situations, have a clue about Hurricane. For instance, I was talking to his karate instructor one day about how we were enjoying his private lessons with one of the junior black belts, Mr. J. The instructor smiled in a kindly way and said, "Mr. J is the type of guy who will be able to connect with a kid like him." It wasn't said with any sort of judgment at all that I could tell, but underneath it was the understanding of a teacher who had known Hurricane for 2 1/2 years and has instructed hundreds of kids over several years and seen all sorts of them. I wouldn't be surprised if he has some inkling of Hurricane's dx.

AddlepatedMonkeyMama
12-12-2010, 01:07 PM
I'm reading this thread with interest, in the likely event that I will have this conversation with my son. I want a doctor's diagnosis for him because I want to confirm this "hunch" I have (I am basing it on what I have read about high functioning autism and hearing anecdotes about how kids with it behave, not on any personal or professional experience); I want to understand him better so that we can find the vocabulary to talk with him about areas where he has difficulty; and finally, I will need a diagnosis in order for insurance to cover any therapies or classes that he may need. We are lucky that Massachusetts recently passed a law mandating coverage of autism therapies.

Mark, you are lucky that your son's condition is fairly inconspicuous (at least to people who haven't spent a lot of time with him). My son's behaviour, especially around other kids or places that demand self-control, is very obviously out of the normal range. I hope that having a diagnosis will help people understand the reasons for his behaviour and to sympathize with him rather than be exasperated (or worse).

MarkInMD
12-12-2010, 01:39 PM
Hurricane doesn't have self-control issues as far as being in public around other kids. His problem comes mainly with either not being able to stay on a less-interesting topic or to stop going on about a very-interesting topic. He has this compulsion to keep going like the Energizer bunny when others have long since been giving him the non-verbal cues that they're done with the subject. ("Mm-hmm? Yeah? Oh, okay..." <shifting body away from him, yet he talks and talks and talks on and on and on>) So yes, it's less demanding than a more physical manifestation of it. Good luck with your journey, and let us know how it goes. And congrats to Massachusetts on passing that law.

Jen
12-12-2010, 02:54 PM
Okay, I finally figured out how to post! Hi, I am Jennifer, DW to MarkInMD and mom to Hurricane.

I wanted to add to Mark's last post. Although his Apsie manifestation does not appear in an outward physical behavior, it does show in life skills.

Hurricane and I had the following conversation recently: Mom - You spilled water on your desk, why didn't you clean it up (finding that had sat there all day long). Hurricane - I don't know. Mom - well, what should you do when something spills? Hurricane - I don't know. Mom - could you get a towel? Hurricane - OH! Clean it up!!

So then I thought, can Hurricane generalize this knowledge to other spills? Mom - What do you do if you spill a drink on the floor? Hurricane - I don't know. Mom - Can you use a towel to clean it up, just like you did when you spilled on your desk? Hurricane - I don't know...I guess!

My point, Hurricane has an amazing ability to learn facts and details on subjects that he is interested in, but when it comes to reading environmental cues to learn the hidden curriculum of everyday situations (how to clean up spills, for example), then he is lost. Hurricane needs these situations spelled out in great detail.

I am so happy to hear that therapy has been approved in Mass. I am a therapist. So, Hurricane has recieved "therapy" since the very begining. I really think that it makes a big difference! Good luck!

Topsy
12-12-2010, 07:30 PM
We are lucky that Massachusetts recently passed a law mandating coverage of autism therapies.


Just had to have a big ole' excited and happy dance for you on that one!! What a positive step forward...big kudos to MA for that!!

elkhollow
12-12-2010, 11:04 PM
Okay, I'll chime in here. My dd was misdiagnosed with Asperger's. Her new dx is "displays some autistic traits" but she doesn't meet the criteria for AS. I don't even know if that's officially on the spectrum or not. I do have a couple of life experience things to add. I discovered that when a kid has a label they are no longer viewed by many people as a complete human being. They are viewed through that person's understanding of the label, which is sometimes inaccurate. My dd was automatically treated as if she were learning disabled by the school. Even though she had completed first grade at home and was the age to enter first grade in school they had her doing kindergarten work. They didn't test her or anything until 6 weeks into the school year and were shocked to discover that she was performing above grade level across the board (even though I told them), yet they left her where she was and refused to move her. This is why she is no longer there. So, my long winded point is that labels can often do more harm than good. They often rob a child of a chance of making their own impression without pre-judgements.

I have given the info on her dx to some people on a need-to-know basis, and I have various reasons for doing this, but generally speaking I feel that it is not something I want people to know because I don't want people looking at my dd and thinking autism. That isn't who she is, it is just an aspect of her makeup that sometimes presents some challenges, and there isn't a kid out there who doesn't have challenges of one sort or another at some point. In fact, I've learned that most people have autistic traits, even if it's only one or two. That's why they call it a spectrum, and most of us are on it even if only a fraction of an inch. Once a person is familiar with autistic traits it's amazing that they can pick from the laundry list their own "autistic" behaviors.

Because we went through a dx process we did explain to her what's going on. We told her that her brain is wired a little differently than most people's and that wiring is what gives her the ability to remember things most of the rest of us can't and to see things most of the rest of us miss, and that is a great advantage. Her interest in science is likely tied to her attention to detail and her incredible memory. We also let her know that that different wiring is what causes some of the difficulties she has in understanding what people mean when they don't say what they mean and when their facial expressions don't match their words, etc... I didn't want to overdo the genius factor, but she does know that there are some people with similar traits who did remarkable things. I didn't want her having the pressure of thinking she's expected to compose symphonies and things like that, but I wanted her to know that there are people with similar traits who have done great things so she wouldn't feel that her differently wired brain was going to hold her back from doing what she wants to do and being who she wants to be. I think (I hope) explaining things the way we did helped her to understand that she's different but not wrong, not weird, and that everyone has something about them that is different from everybody else. We also let her know that nothing about her had changed, that she was the same person she was yesterday and the day before and last year and the year before that.

In the end I wish we hadn't gotten her officially diagnosed. I wish I had been able to get this information in an informal, unofficial way-I would have much preferred that. I am glad I know, though, because knowing helps me understand her better and that helps me be a better parent.

I hope this helps you in some way.

Miguels mommy
12-13-2010, 01:18 AM
Hurricane and I had the following conversation recently. That sounds like the daily conversations I have with my son. He's unofficially been dx by a friend that does school dx's. We've talked with him about the individual situation he's having but have never addressed it as a whole. He's told me he's like Livvi Owen (http://www.amazon.com/Livvie-Owen-Lived-Sarah-Dooley/dp/0312612532). We've talked about ways that he is / isn't like her and the kids in her class and reminded him that if he ever truly wants to know he can ask us to take him to the dr. anytime that those are things they help with. We also told if there's ever an issue that mommy and daddy can't fix like picking again we'll go get the dr.'s help. His job is to have fun and tell us when he needs help. Other then that time we don't bring it up with him. All kids have there different quarks and things they have to learn his just happens to not be academically.

dbmamaz
12-13-2010, 10:25 AM
. All kids have there different quarks.

LOL I know, you meant quirks, but my first thought was that all kids had these subatomic particles, you know, up and down and strange

mommalee93
12-16-2010, 12:02 PM
My oldest son is 7 and at 3 1/2 got an official diagnosis on the Autism spectrum. We were told then that he was either ppd-nos or aspie but they left it at "autism" for his services. We have not ever gotten him further testing to see where he falls now that he doesn't need those services anymore. My husband debated a long time over what to tell our son and what he should know and when. We decided to just give him exactly what he could handle at that time and as he aged we have given him a bit more to work with. For example when he was 4 Autism was thinking different and needing speech therapy, now at 7 he understands that Autism is thinking different, having trouble paying attention, getting stuck on a thought and not being able to move on, having trouble wearing certain clothes, etc. We have never let our son use his Autism as an excuse for anything. We felt like not telling him would lead him to think it was something to be ashamed of. As it is now my son tells people that having Autism means you are a genius who thinks different. We also have to deal with his younger brothers, although one is not old enough to know yet, the middle son is very much aware that his brother is different. We never expressed this much he usually comes to me and asks why his brother does this or that and we explain it to him. It is important to us that he grows up understanding his brother so that when they are older he will be able to help him still.

hockeymom
12-16-2010, 02:45 PM
Mark, I've been silently following your postings about your son, and even replied once but was kicked out because I wasn't logged in (grrr--my fault!). We've had a hunch that our son may be Aspergers since he was very young; the idea was introduced to me by some well meaning librarians who knew well his need for specific information that was (I realize now) well beyond the "normal" range of interest for a 3 year old, along with his ridiculous awareness of detail and memory. Since then I've done tons of research and although I hardly obsess about it, I can't help but be aware of how many traits sound like him. But, like your son, he's very high functioning and no casual observer would ever suspect that he has particular quirks and challenges; they just see him as happy and smart and talkative. It's at home that the obsessing becomes an issue, the inability to let go of frustrations or subjects, the insistence that he dig deeper and deeper no.matter.what.

Although I do suspect he's on the spectrum, and given some family history and personality quirks sprinkled throughout one side in particular I'm not surprised, I've no interest in having him officially diagnosed. So far it doesn't affect his ability to function, but it does give him an amazing way of looking at the world that I simply cannot relate to but that will serve him very well as he gets older. We have always worked on helping him deal with his issues and we can see already that it's paying off, although new ones are emerging as he is getting older.

I want to thank you--and everyone who is participating in this thread--for being so open about your children, about the struggles they face and you face as a family and also about all the wonderful gifts the come along with it. The more I read the more I am sure my mama instinct is correct, but also the less limiting it feels. DS is who he is, on the spectrum or not, although I will say that feeling/knowing where some of his quirks come from does help *me* deal with it. Whether it becomes an idea he needs to be aware of I'll know in time.

MarkInMD
12-16-2010, 07:44 PM
We felt like not telling him would lead him to think it was something to be ashamed of. As it is now my son tells people that having Autism means you are a genius who thinks different.

Great perspective, from both you and your son. It's indeed nothing to be ashamed of, and it's fine to be different.

Hockeymom, our kids do indeed sound like brothers from different mothers. They'd probably get along great! Looking back, we also can see plenty of signs that were classic Aspie hallmarks -- early interest in reading and numbers, huge vocabulary (which is something everyone who meets him notices, and I'll be glad to take some credit for that, as I've never talked "baby talk" to him because he always seemed like he could understand and use big words), and intensive focus on an object of interest. It's definitely true what they say about that 20/20 hindsight.

I'm also very thankful for the openness displayed in this thread. Perspective is a wonderful thing.

hockeymom
12-17-2010, 07:39 AM
Yes, Mark, they DO sound so alike! I've found myself nodding and saying "yes! yes! exactly!" to your descriptions about Hurricane, it's uncanny. You've given me the confidence to "speak publicly" (is that what this is?) about it for the first time, and I do thank you for that. I can't imagine that anyone would really believe me if I tried to talk about it elsewhere, but they don't see quite what we see. We tried to talk to his teachers in K and grade 1 before we pulled him out, tried to explain that he needs specific directions on how to do something or it just won't get done. That giving him extra work (because he was well ahead of his peers and so bored) isn't enough--he has to be TOLD to do it (and exactly what to do, and when). They were baffled why such a "bright" boy spent so much time fiddling with his pencil and talking instead of taking the initiative to do more--well, he didn't know he was allowed to do more (and they shot him down when he asked, but I digress...). We have fewer of those issues now that we're homeschooling, since the busy work aspect has been taken away and we work to his interests. It's the only way, really, otherwise I'm teaching to a brick wall.

I could go on all day, but you've already done an excellent job describing my son ! :)

AddlepatedMonkeyMama
12-17-2010, 09:04 AM
His problem comes mainly with either not being able to stay on a less-interesting topic or to stop going on about a very-interesting topic. He has this compulsion to keep going like the Energizer bunny when others have long since been giving him the non-verbal cues that they're done with the subject.

You've also done an excellent job describing my HUSBAND, Mark! I also see a similarity in the difficulty with common sense life skills that your wife described and the compulsive need to dive into a subject that HockeyMom describes in both my husband and son. I can see how these traits are hereditary. Conversations like these help me understand both of them better. I have to admit I feel like banging my head against the wall sometimes!

I'll add my sincere thanks to everyone in this thread. It's easier to talk about this in an online (and anonymous) forum with sympathetic people than "IRL". I'm glad I'm to have found folks who are on a similar journey.

dbmamaz
12-17-2010, 12:24 PM
Since so many ppl expressed excitement about being able to talk about these things on line, I thought I'd mention a yahoo group i'm on. http://groups.yahoo.com/group/HomeschoolingExtraordinaryKids/ - the description starts with

"Is your child gifted in one or more areas but also has a learning difficulty?

Do you have to "think outside the box" when it comes to creating curriculum to meet your childs needs?"

Just thought it might be of use to some of you.

MarkInMD
12-17-2010, 04:32 PM
Thanks for the link. I'll check it out.

I don't know if it's a matter of "courage" for me to talk about these things. I probably would IRL in the right circumstances, but that's mainly because of DW's work and being familiar with the terminology and the fact that talking about it has always been more or less a part of our daily lives aside from Hurricane. Without that, I'd probably be a bit more reluctant.

I said something to DW last night that I truly believe -- if you could go back in time and gather up all the kids you considered "nerds," chances are that the majority of them would be somewhere on the spectrum (mostly Asperger's). Ain't it great that we have a new name for it?

Dutchbabiesx2
12-17-2010, 07:53 PM
If you can ever see or listen to Tony Attwood, you'd think only the cool kids have Asperger's . . .he has some great funny (lighthearted) things to say about Aspies, pretty much the general population of engineers would qualify as Aspies! My son has SPD (sensory problems can be part of people on the spectrum) and at times I think both my kids put one foot in the Aspie world, I think my husband has Aspie tendencies (Engineer) and my FIL does too (PhD Chem and a Train freak), Aspies are everywhere and do everything, part of what makes the world go 'round. The biggest things to be concerned about are girls that are Aspie in public school, they tend to mimic and then at some point breakdown, and making sure your kid does not get negatively influenced or taken advantage of, but HS tends to take care of that for some time.
The nerd thing- they dressed comfortably, that would be a sensory thing, they were slow in the romance department- that would be lacking some social skills, but now we know many Aspies rule the tech world!
I think I will have to buy my older son a house and keep his check book, but aside from that he is very creative, my younger son is a train freak too, but he always knows where his shoes are and is a number whiz . . . crap shoot!

The experts say the majority of Aspies are the product of an Engineer type and a Nurturing Type (teachers, nurses . . ) maybe mild Aspies create less mild Aspies? . . .the evolution of the spectrum, soon it will be only the Aspies who are 'highly evolved' ! ;)

AddlepatedMonkeyMama
12-17-2010, 09:06 PM
The experts say the majority of Aspies are the product of an Engineer type and a Nurturing Type (teachers, nurses . . )

Oh. My. Goodness. My father-in-law was an engineer/math teacher and my mother-in-law was a nurse/daycare provider. It is all becoming clear to me now.

Elizabeth
12-17-2010, 10:32 PM
My son (12 now) was diagnosed with Asperger's about four years ago. We were upfront with him about it but also provided plenty of reasons it is never an excuse. Every person is unique and this is one thing that makes him unique-although NOT alone. There are many others (many very successful).
While I don't sugar coat we emphasis the strengths he has that are also part of Asperger's. We also encourage him to ask questions when we see the doctor(s) and become active in his own life.

MarkInMD
12-18-2010, 12:33 AM
The experts say the majority of Aspies are the product of an Engineer type and a Nurturing Type (teachers, nurses . . ) maybe mild Aspies create less mild Aspies? . . .the evolution of the spectrum, soon it will be only the Aspies who are 'highly evolved' ! ;)

I'd have to think about this in our situation to see if it's true. I'm more of a verbal/liberal arts kind of person and DW is more hands-on/scientific, but we do have crossover into each other's areas (e.g. she's a great singer, I love astronomy). One way in which we're completely different is in motor skills. She can build a toy out of spit and candle wax, and I look at tying anything beyond a simple knot as rocket science. Maybe that's where it comes from!

hockeymom
12-18-2010, 05:17 AM
I have also read that many if not most engineers would fall on the spectrum if there had been a spectrum when they were growing up. When I look at one side of my family I have little doubt where DS gets his wiring from, not just the quirks but the scientific intelligence as well. The wiring skipped me--I'm constantly baffled by him (and amazed, and impressed, and often overwhelmed)--but from his first days it was clear that he and my dad share an uncannily similar way of viewing the world {hi dad--I know you are following this thread!}.

It's a great relief to finally feel able to air my instincts and not be made to feel like I'm off my rocker. Our goal, of course, is to keep working on the issues, but it's nice to know that we're not the only ones out there who are dealing with them.

dbmamaz
12-28-2010, 12:24 PM
strangely, the group i posted has been deleted - which usually means someone reported it (falsely) for being innapropriate? Sigh. They started a new one: http://groups.yahoo.com/group/Homeschooling2ExtraordinaryKids/

Batgirl
12-29-2010, 08:42 PM
I told my son about his autism diagnosis when he was six, last spring. It didn't make much of an impact, mostly I think because he doesn't see himself as different from other kids right now. I'll try again when he's a little older. I mainly wanted to tell him to explain to him why the word might come up in reference to him in conversation. I think a diagnosis can be nice to have if you ever consider getting therapy for social skills, fine motor skills, or sensory issues--it was certainly necessary for us when my son was younger. Issues can also be very subtle when a child is higher-functioning--so it can help point in the right direction for getting more information and support. Also, it can also be nice to network with other folks and it can be a relief to know that there are other parents going through the exact same things you are! I've found that using the label to explain your child's behaviour can be tricky. Often it generates some sympathy, but people tend to understand autism so little, and problems can manifest so differently in spectrum kids, that sometimes it can create more problems. The higher-functioning kids tend to be the ones with the worst behaviour problems and you can get people who think that you are using it to excuse his behaviour, and that he is just spoiled. But I do know some parents who buy t-shirts for their kids to wear out in public, or get business cards with a short explanation of autism on them to hand out if there are problems in public.
But I digress!!!! I would say that a diagnosis is necessary if you want to pursue therapy. Btw, the Aspie diagnosis is going the way of the dodo very soon......the revised DSM is eliminating it as well as PDD-NOS, I believe. The only diagnoses will be Mild, Moderate, or Severe Autism.

MarkInMD
12-29-2010, 11:34 PM
Btw, the Aspie diagnosis is going the way of the dodo very soon......the revised DSM is eliminating it as well as PDD-NOS, I believe. The only diagnoses will be Mild, Moderate, or Severe Autism.

My wife (as I'm sure I've mentioned somewhere in this thread, she's a pediatric OT who also sometimes posts here) was just at a conference earlier this month where she learned more about the new DSM. According to her, it's true that the mild/moderate/severe will become the standard, but it will also have appended to it something like "with Asperger's-like characteristics." So it's not totally gone, I suppose, nor are any of the other spectrum diagnoses like PDD-NOS, Retts, etc. They're just trying to take away all the extra labels as the "up-front" labels to minimize confusion over what's considered mild, moderate, or severe.

If I had a child who was lower-functioning, I'd probably go with the T-shirt on occasion. But Hurricane's behaviors are more subtle, so most people wouldn't notice them unless they got into a semi-long conversation with him. Then they might start to wonder why he's hopping on one foot and giggling while he gives an answer.

ercswf
01-02-2011, 04:48 PM
Following this conversation lightened my day in a way. I have a 6 year that some days I feel totally alone that I have to instruct my son on every way a spill can be cleaned. Mean while he is on one foot eyes wondering to the celling and humming as I answer his question on the cleaning. (like yesterday when the milk spilled on the table chair and floor. My son already knew how to clean milk off the floor but had to come get step by step instructions on how to clean it off the table and chair.)

Melissa541
01-03-2011, 03:33 PM
Oh my, this thread is speaking to me!

Jen, the conversation you had with Hurricane about the spilled water...that could happen any given day at my house, with my 9 year old daughter. We also have issues with sleep and tics and conversations that are more like monologues (which we now jokingly call Aspielogues). She's has some OCD issues, as well as anxiety. Anger issues, she has trouble staying calm. She doesn't tend to show excitement; she could get the thing she's waited for her whole life & she'd either appear outwardly to not care so much, or she'd cry in gratitude.

She desperately wants to be friends with everyone, but for some reason other kids just don't "get" her, so they tend to keep away from her (one mom at co-op told me her daughter said M1 is weird & no-one likes her; M1 lists this woman's child as one of her best friends, so she's completely unaware of how others view her, apparently).

We didn't start to research my daughter's behaviors until she was about 7, when a year spent in PS & having another child led us to realize that some of the things she was doing didn't seem typical of a child her age...or any age, really. When I started to read about AS & high functioning autism, it was like a Hallelujah moment (and I'm an atheist! ;) ).

We've not had her tested. I once brought it up with her pediatrician who completely dismissed the idea, saying he'd seen children with AS & M1 definitely didn't fit. I disagree, though. I'm no expert in the field of Autism, but I am an expert in the field of my child, and something is going on with her. As she's getting older & seemingly closer to puberty, she's quite a bit more emotional and, I'm sorry to say, I seem to have a harder time handling her; I try for patience, but don't always succeed. For that reason, I'm considering pushing her pediatrician a bit more to lead us in the direction of testing. I want to know how to better help her.

We have spoken about it with her. We've told her we think she's got this condition & it means her brain works in different ways; some things about it are super cool, and some things mean she'll have to try a bit harder to understand people and situations. She's completely cool about it. Infact, she's picked up our copy of Tony Attwood's Complete Guide to AS and every once in awhile she comes out of her room to say "Listen to this! It sounds just like me!"

I feel a bit...yuck, for lack of a better word right now, for telling her she might have this condition when I'm not medically qualified to make a diagnosis, but it really has helped her understand herself. Like saying, "Oh! THAT'S why I do this!" Not as an excuse, but as an understanding.

Thank you all SO MUCH for this thread. It's so comforting to read about other families who deal with these issues. And, Jen, really, that spilled water conversation...that's so us.

**ETA changed my avatar in honor of this thread :)**

Batgirl
01-04-2011, 11:03 PM
Melissa,

I am definitely a fan of testing. Most pediatricians don't know enough about Aspergers to be able to identify it in a 15 minute visit. You can get a good referral to someone who can by finding your local Aspergers/Autism Yahoo
group and asking around. If you get a diagnosis, your daughter will qualify for speech, social and occupational therapy if she needs it.

Good luck!

MarkInMD
01-04-2011, 11:22 PM
Yes, if you need/want services, absolutely get the testing done. I'm lucky in that I have a wife who can provide them for free. :)

dbmamaz
01-04-2011, 11:30 PM
I'm considering pushing her pediatrician a bit more to lead us in the direction of testing.
Also, you do not need to go through your pediatricain for testing, unless you need a referral from your pcp for insurance purposes. And even then, you really should ask around locally for goot places to get tested - either private psychologists who specialize in that, or perhaps a local university? and then TELL your pediatricain that you want an evaluation. You could ask your pediatricain for a recommendation, but dont bank on that unless you REALLY trust your pediatricain - and it sounds like you shouldnt.

zette
01-05-2011, 02:59 AM
Look for a developmental psychologist or developmental pediatrician who is trained to administer the ADOS (Autistic Diagnostic Observation Schedule). That test is the gold standard. Our local Children's hospital has a Developmental Evaluation Clinic that accepts insurance, so that might be a good place for you to look. Too many generic psychologists out there will talk to your child for 30 minutes and dismiss the possibility of autism spectrum -- we had one who told us our child was not autistic because he displayed empathy (concern that the doctor should get to win sometimes) during a game of connect 4!

MarkInMD
01-05-2011, 05:13 AM
Too many generic psychologists out there will talk to your child for 30 minutes and dismiss the possibility of autism spectrum -- we had one who told us our child was not autistic because he displayed empathy (concern that the doctor should get to win sometimes) during a game of connect 4!

Hurricane would probably flunk that test, too. At least I hope! :)

ercswf
01-05-2011, 09:37 AM
My son went to a developmental pediatrician. Thats how we know he is Most likely on the autism spectrum just high functioning. I was also given Options of being taught how to help him my self and resources or taking him to outside help for the things he was having problems with. While tempted to use the outside resources we actually found that it was easy for us to make time in our live to help him out on our own. I never thought of going to a doctor for it because we did not see it as much of a problem till I started having other people comment on my son non stop, asking about how he responded to things. It was actually a husband of a friend that drew the connection between my son and autism when they watched him for me once. Apparently he had a couple of cousins that had Autism growing up.

dbmamaz
01-05-2011, 09:46 AM
Our first dx was from a developmental pediatricain, but I was really not impressed by him at all. He said aspergers and adhd. Someone along the line referred me to a phd psychologist who specailizes in testing - she administered probably 6 hours of testing over several visits and her write-up was SO much more thorough than the first guys. She said pdd-nos (milder than asperger), adhd symptoms probably secondary to sensory integration dysfunction, anxiety, dysthimia, tic disorder, and processing disorder. One of the school psychologists told me she'd had several disagreements with this particular psychologist, but if she said a kid didnt have aspergers, you better believe that kid doesnt have aspergers. Of course, the anxiety and disthymia (ok, i have no idea how to spell that) was re-defined as atypical bipolar by the psychiatrist, but still - that was the best eval i've seen.

So definitely try to find a local autism group - maybe on yahoo - even state-wide, and ask ppl for feedback on evaluators. You need someone w passion and talent more than a specific designation, imo.

justcatie
01-08-2011, 12:28 PM
chiming in a little late on this...

We told Colin about his diagnosis from the start. It's never really mattered to him what it is, because it's not like giving him a name for how he acts/how his brain works changed anything for him. We told him, and he was like, so? I think all it did was let him know why all these people wanted to talk to him, give him tests, etc. He, and we, don't view it as something that is "wrong" with him, so that might be why he's not bothered.

I think it was more important for US to get the dx, we needed the answer. He just does not care about having a "label", naming it didn't effect his life, didn't change his day to day or how the people around him treated him nor did it change him in anyway. I am very very vocal about having an Aspie, because I love and adore my child and that's who he is. Plus, you kind of want to tell people " I am not a bad parent...he's on the spectrum" or "stop staring, it won't fix him!" I don't think "I have Aspergers" or "I'm different and that's BAD" goes through Colin's mind at all, because he's just doing what he does, being a kid and growing up. He's not bothered by the things that make him different, and the people around him have adapted to life around his quirks. I also have family and friends that have made him feel very loved, and tell him how cool he is all the time.

There are many little things that Colin does that we work with, around, adapt to, but by far the hardest to overcome was the sleep issue. His team FINALLY said it wouldn't hurt to try melatonin (we trailed risperdal, and it was a disaster, so no more meds!!!) and it works like a charm. He's never going to be a morning person, though. Neither am I so I can deal with that.