Anyone else hear "I just don't see it"?

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Registered: 05-26-2000
Anyone else hear "I just don't see it"?
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Tue, 06-06-2006 - 8:34pm

Hi again all. I normally mostly lurk, but I really need some input...maybe even just to vent.
Josh (6) is in the process of being evaluated by a Behavioral Psych. who said he "definately shows classic signs of Asperger's" after being urged by some professional friends to have him tested. Anyway, I'm sick to death of close friends that I've shared the probable diagnosis with who simply say..."I just don't see it, he's a normal kid to me". What do you say to that. I mean come on...is it "normal" to be in an amusement park and take 20 trips to the bathroom in a three hour time period just to play with the automatic paper towel dispenser? We're in an amusement park by gosh...look at the rides, cotton candy etc. tell me the most enticing thing here is the paper towel dispenser. When talking about the Star Wars obsession I get alot of "well that isn't an obsession, my child loves Dora and is obsessed with Dora". Good golly, do you try to have a conversation with your child and although there is nothing Star Wars in the topic or within view a response is "yoda has a green lightsaber"? How in the world does one ever get ones' friends to understand or at least just listen in support instead of making you feel like you are seeing things and "looking" for a problem (yes, I've been told that too). Or, maybe I AM just "looking to hard". Anyone else have this problem? If so, what do you do?
Thanks for letting me vent.

Heather
mom to Josh (6 probable AS diagnosis soon) Justin (2nt)

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Registered: 10-03-2004

Dear Heather,

Your son is only six. Is he by any chance a little small and cute for his age? Those other people simply are not around him all the time. And you see his symptoms in the context of 24 hour care, they only get glimpses of what he does. How do other kids respond to him? Kids as they get older than 3 or 4 know right away, I have watched them. Grownups ... usually don't. They explain away, compensate for, do backflips to enjoy your child and NOT see problems, etc.

Also, SOME people's idea of being supportive is to always try to see everything in a positive light no matter what the evidence, drives me a little nuts personally, this form of "supportive". And your friends like you, like your son, are used to your son and probably still find his quirks rather adorable and just kid-like, even.

BUT (if your child is spectrum, sure sounds possible by your description, BTW) as a kid gets to be 9 or 10 or older and if those behaviors don't improve, well, THEN people will start to notice more and more. Those behaviors really stop being cute as a kid ages. Imagine your son taller than you and still doing all these behaviors.... And now that you have told them, in the next 4 or 5 months, they may also start to notice, now that they have idea of what to look for!

I think I would look for the kindest and most supportive friends you have, and get their support without this "poo-poo-ing" I would sorta stay away (lightly) from others the "poo-poo-ers" and maybe not discuss this possibility too much with people who try to talk you out of your observations and feelings. Esp. as if he IS on the spectrum, you want to get the help he needs ASAP --- not put anything off. Getting the eval right away is key, in case there are issues to address right away.

BTW, these boards are a GREAT friendly supportive place to vent and get support, esp. when the people in your life are not being helpful. GOOD for you for getting the eval set up right away. Let us know how things are going, how the eval turns out, etc. And ask away if you have any questions.

My own son is now 9 and has great reciprocal conversations about all sorts of subjects, is learning to handle himself emotionally, is excelling in school, has good friends, and is playing Little League baseball. He is also spectrum...

yours,

Sara
ilovemalcolm

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Registered: 05-26-2000

Sara,

Thank you so much! I really needed to hear from someone who understands, and really does give support. To answer your question(s) yes, he is a bit small and cute for his age, and right now some of the things he does people find cute, funny, and endearing (sp?), but you are exactly right, four or five years from now it won't be so "cute". As far as the children interacting...he generally is kinda lost looking in a group setting, and unless he is really into an activity or finds a fellow Star Wars junkie is left out or at the back of the group.
Just a little background on Josh's development...he was diagnosed hypotonia at about nine months with sensory and vestibular issues. He was hyperlexic, having number, letter, and shape (and I mean shapes like rhombus, paralellagram etc) by 18mos. He overcame most of the gross motor delay as well as a lot of the sensory problems while in EI, but now is having some fine motor problems and stims as well as problems in school in addition to the forementioned. He also recently, we found, loves patterns and numbers. He will make patterns with everything, and knows which school bus number each child in his class rides and the order in which each bus lines up. He reads off house numbers as we drive down the street. Once he graduated EI we honestly thought that it must mean there are no longer any problems, but before kindergarten a friend (who happens to be a SEd teacher at my son's school) suggested Asperger's, and later my neighbor (who used to watch Josh on Sundays when both me and hubby worked, and who works with handicapped adults) also suggested Asperger's when I told her he was having difficulty at school. That is how we got to where we are today. :)
I am so with you on getting the eval ASAP. If his problems are coming from being on the Spectrum then we will know how to work with him and better help him before he's all of the sudden in upper elementary and he is really sticking out from his peers and having big problems that far into school.
Sorry this got so long. Thanks again!!!

Heather

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Registered: 03-26-2003

We have gotten alot of that over the years actually. Even recently by folks who just don't know us or don't want to see I guess.

First, let me say that my kids are 10 and 12 and they are pretty much strike zone aspies I am told. Right in the middle and Cait is your stereotypic classic Aspie. Mike is a little tougher of a nut to place. I have even been hearing this again lately. Usually from aquaintances or my inlaws who waver between being autism advocates and not buying it on a daily basis. It comes down to many folks just don't know what autism is or really understand it. It makes it very hard on our kids as they get older and are expected to think and react like typical folks but they are not typical. Invisible disabilities are hard.

This is a good topic for me right now. I have to say I have had a frustrating couple weeks. I finally was at a spot a week or so ago where I started thinking maybe they aren't on the spectrum. Maybe I am nuts. Maybe I am just not expecting enough out of them and it is just me. DH took care of that for me and knocked some sense into me. And then we were talking to someone he hadn't seen since high school. She asked us if we were going to some social thing and DH said we weren't and becuase we had 2 autistic kids finding child care and the time is hard. And he proceeded to explain a bit about our autistic kids. I never heard him do that before. It is almost always me who does that, but his doing it helped me get back out of that crazy funk of buying into the "I just don't see it's".

Those who just don't see often aren't familiar with the autism spectrum.

I will tell you that I can go into a school with my OT friend and some other OT's who are knowledgable about autism but not to the extent of a parent or autism specialist. We will have kids walk in and I usually can pick out in a minute if they are on the spectrum or not even when these other OT's can't. You just really get a feel for what an autistic personality is when you are a parent.

However, I will say there are even some kids I know who have AS diagnosis and I don't see it, but I don't live with them either. They are aquaintances and I really don't have the kind of degree to justify diagnosing or not diagnosing a child. I have just learned to take the parents and professionals word for it.

Renee

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((((Hugs))))) BTDT

 


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Registered: 03-25-2003

Heather, since I am only a month past official dx, I can honestly say I have some "poo-poo-ers" in my life as well.

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Registered: 03-25-2003
P.S. Although I get quite upset when people don't believe me, I actually find someone saying "I don't see it, can you tell me what's going on that I don't see?" (one friend said something similar) very uplifting to me.
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Registered: 10-03-2004

But Renee,

Really that's cool, too. We work and work with them with Autistic Spectrum branded front and center on our minds and for periods of time it's like that's all we can think about, right? But really ASD is just a part of who they are, not all that they are (like you don't know that, right). But here's what I think ... As they grow and become more and more themselves, well, in a way the autism drops away. From the front. Isn't that great? And how it should be?

'Course, it comes back front and center periodically, sometimes painfully and sharply --- but I think you are starting to have a sense of the grownup people they are becoming now. The independent adults, quirky, unusual and way cool, that they are going to be. I definitely have that sense of Malcolm often these days as we go back into the Golden Glow of him growing, achieving, making bigger steps into who he is and will be. And then I get to "forget" some, too. And that makes me very happy, because then the Big "Project Malcolm" can just be hanging out with my cool kid, Malcolm.

Oh - and I totally have that sixth sense about ASD, too. And I just know I am always right. The sad moments are when I can sense an un-dx'ed one and it is clear that the parents AND the child don't know. But then, I have always had spot on Gay-dar as well, I used to offer to help my gay boy pals scope out potential dates in a crowd. The only people I COULDN'T read always turned out to be bi...

Sara

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Registered: 06-25-2003

Heather,


I hear it All. The. Time.


My son is considered a rarity, although notsomuch as many people think: An extroverted "Autie".

-Paula

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Registered: 03-26-2003

I hear it more about Cait than Mike. More they don't see the extent of her difficulties. Like you bring up the regressions, I bring up how much she was delayed and some of her behaviors.

Sarah, I would love to think it was because my kids had made such progress that I went through that phase but it was more a mini denial. Both are not doing well lately so I decided it must be just parenting. It is a place I sometimes go, lol. But only in my own head, I don't tell them that.

It can be just extreme what people will say is normal. The other day Cait wanted to tell Mike's teacher after school about the play she was in. She couldn't even initiate it in the right direction or appropriately. We were outside the school after school and she comes up with head turned away and makes a random comment about the play. I cued her how to bring it up and she did but then proceeded to keep turning around to face the buses to talk to the teacher and I had to keep turning her around. Not just poor eye contact, she wasn't even orienting her body in the right direction. Annie (teacher) got to see only the back of cait's head and I had to kind of hold onto her with a hug to keep her oriented in the right direction. Well I had an IEP and was in the classroom soon after and mentioned something to Annie about it and how stressed Cait is. Cait adores Annie and usually is able to talk to her with poor eye contact but usually better than that. A classroom aide who was there tries to convince me that all kids do that!

Renee

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Registered: 03-31-2003

Yeah, I hear it too! I have one close friend who, whenever I talk about challenges Sylvie is going through, will say, "But Noah does the EXACT same thing." I know that she's just trying to make me feel better, but of course Noah is an incredibly precocious, social, typical little boy, and I am fully aware that there is NO WAY he behaves "exactly" like Sylvia. So all it does is get me frustrated and make me feel as though I can't talk to her about Sylvia at all, because she just blows it all off.

I think it's also difficult when our kids are very verbal, because it doesn't seem to fit the mold of autism the way most people think of it... I even have some friends who are parents of autistic kids, and they hear Sylvie chatting away and say, "Are you sure she's PDD-NOS?" Their experience with autism is just so different from mine -- their kids are pretty much nonverbal -- and it's hard for them to understand that Sylvia has challenges, too. So sometimes even people who should understand, don't quite!

The other things is that Sylvia is much more comfortable with adults and older kids than she is with her peers -- a common thing for ASD kids. So often the adults look at Sylvie and see an adorable, social, chatty little girl; they just don't see the social issues she has with other kids her age, and of course they also don't see the tantrums etc. because Sylvie usually saves those up for when we're at home.

Whatever the reason, it can get very draining constantly having to explain to people what the diagnosis means... I even had my OB/GYN tell me that autism was "overdiagnosed" and that Sylvie would be "just fine." ARG!!!

So, hang in there!!! You can always vent here!!!

Jennifer :)

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