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happysmileylady

When you have met one kid with autism...

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 you have met one kid with autism.   That's the cliche, right?

 

DD8 has a diagnosis, DS6 hasn't been evaluated, but might very well qualify.

 

But, the thing is, both online and in person, I just don't feel like I am finding ANYONE who has a kid with autism who has kids like my kids.  For example, today, I had a meeting with DD10's GS leaders about cookies (I am cookie mom)  Once we covered the basics, as often happens when moms have time away from kids, talk turned to other things.  Both of these moms also have kids with autism.  One is in DD10's troop, the other is in boy scouts.  The things they discussed, so much of it are challenges we just don't have.  At the same time, some of our challenges are not the same as theirs.  

 

For example....the mom of the girl scout.....her kid eats EVERYTHING.  We, on the other hand, have been food chaining HARD for over 6 years.  But, the 10yr old has age appropriate language, my DD8 for sure does not.   The mom of the boy scout...her kid eats bacon, chicken, no produce.  And it's true that that is really where we have been in the last few years (but again, HARD food chaining.)  Yet, her kid has serious stim and anxiety things going on that we have never had to deal with.  

 

I dunno.......It just feels like even with the diagnosis....there's still not many commonalities.  I am sure there are.  I am sure I have posted about some even.  But the challenges can be SO different.....sometimes it feels like the difference between celiac and diabetes....two completely different disorders, with similar restrictions that may or may not be the same.  

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One company doing genetic testing is listing 83 different paths into autism. You're not crazy. You can have de novo mutations (out of the blue), syndromes, inherited stuff, on and on. And then things are complicated by the OTHER genetic issues, the exposures, the nutritional status, etc. So like me, reading what you're describing, nobody in my family identifies with ANYTHING you listed. Well maybe language stuff, but that's actually in the criteria (effect on verbal communication).

So yes, I expect there to be commonalities in things that are actually diagnostic criteria, but for everything else it's going to vary WILDLY. What blows my mind is how much we overlap with people who are maybe hitting ASD3 support levels, ID, etc. Like you wouldn't think, to look at my gifted IQ ds with lots of language, that there'd be so many similarities with someone who functions so radically differently, and yet there are. (door slamming, the way they stim, little things)

Maybe go hang with some other people who have autism to find your tribe? I mean, people who are able to show up at these events might not be representative of the breadth. I've never tried my ds on scouting, but I looked into it a few years in a row and gave up. I don't know now. 

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19 hours ago, PeterPan said:

One company doing genetic testing is listing 83 different paths into autism. You're not crazy. You can have de novo mutations (out of the blue), syndromes, inherited stuff, on and on. And then things are complicated by the OTHER genetic issues, the exposures, the nutritional status, etc. So like me, reading what you're describing, nobody in my family identifies with ANYTHING you listed. Well maybe language stuff, but that's actually in the criteria (effect on verbal communication).

So yes, I expect there to be commonalities in things that are actually diagnostic criteria, but for everything else it's going to vary WILDLY. What blows my mind is how much we overlap with people who are maybe hitting ASD3 support levels, ID, etc. Like you wouldn't think, to look at my gifted IQ ds with lots of language, that there'd be so many similarities with someone who functions so radically differently, and yet there are. (door slamming, the way they stim, little things)

Maybe go hang with some other people who have autism to find your tribe? I mean, people who are able to show up at these events might not be representative of the breadth. I've never tried my ds on scouting, but I looked into it a few years in a row and gave up. I don't know now. 

Thank you for this.  Things really do seem to vary WILDLY, as you said.

 

I often wish that diagnosis and treatment could be better differentiated and targeted.    I sometimes feel like once the word "autism" is uttered, the person and their individual needs and challenges gets lost.  People go "OOOoohhhh, Autism...." like that's what defines the kid.  

 

 

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12 hours ago, happysmileylady said:

I sometimes feel like once the word "autism" is uttered, the person and their individual needs and challenges gets lost.  People go "OOOoohhhh, Autism...." like that's what defines the kid.  

 

This, definitely, this! With other diagnoses, too... or once a child is a "challlenge," all people can see is the challenging behavior, but the good gets lost. 

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You might find your tribe yet! We have things in common with others that surprise me and other things not in common that would seem more likely. 

Some of this will clarify with age too.

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I hang out a fair amount on Autistic Twitter, which is the first place I’ve really interacted with other Autistic adults who aren’t exactly like me. (2E professional with multiple graduate degrees.) I’m continually shocked by the amount of overlap in our autistic experience, despite our very different circumstances.  Like a woman who can’t work or live independently complaining about her struggle to shower regularly, and I’m thinking yeah, it’s really been awhile since I washed my hair...  Or the guy who openly brings a large stuffed animal with him to work.  I would never do this, but upon reflection I have to admit it *would* comfort me.  Autism is a big tent, with a lot of variation, but I do believe there is a common core, not always visible to the outside observer. 

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