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InThisTogether
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10 Oct 2014, 9:00 pm

Hi, and welcome to WP

My daughter has had changing diagnoses attached to her throughout the years. It started with classic autism. Then it was HFA. Then it was PDD-NOS. The truth is, today she is very able to compensate at the young age of 9. Most people, while probably recognizing that she is not like most girls her age in many ways, would never guess she's on the spectrum. Until she loses her ability to compensate. It is also true that no matter what label has been placed on her, she has never presented as your stereotypical autistic. So I totally get where you are coming from with people questioning. I usually say something like "thank you for your concern and input. I will take it into consideration."

Today, I usually say she has "mild autism." I know many on the spectrum object to this description as they feel that no one on the spectrum has "mild" issues, and I do agree with that. However, when it comes to getting other people to understand and accept, this seems to work the best. It seems to convey that she is autistic, but that she will not fit the autism stereotype, and it somehow lets people understand that they will only see "hints" of her autism most of the time.

If I am to be completely honest, I do not think she has the same "thing" that most autistics I have met have. However, having known her intimately for the past 9 years (her whole life :) ) I am certain beyond a doubt that she is not wired like the masses. She does not perceive or experience the world the same way her peers do. And while I sometimes don't know if autism fits, I am certain NT doesn't. So, it is where we will hang our hat until the day comes when they are able to parcel out and delineate between all of the "things" that are currently called autism. My son sits somewhere in this broad spectrum of non-NT-ness, as do I. I guess what I am saying is that even if the label doesn't fit like a glove, you may eventually find that it fits good enough to help make sense of some things. Understanding that the three of us are not wired like your typical person has perhaps been the most helpful realization I have ever had. There is a reason we are not like everyone else, and it goes down to the very way our brains are wired. Expecting us to be like everyone else is like expecting a cat to be a dog. Not only is it silly, there isn't any reason to do it. So, instead of trying to fit my kids into the NT mold, I focus on figuring out how to help them be the best "me"s they can be.

Beautiful quirks and all.

Lest you think I am painting too rosy of a picture, it is not always easy and sometimes it is downright painful. But when I was growing up, I was told I was just like everyone else, and that was even more painful because I felt like such a failure because I wasn't like everyone else, so I thought there was something wrong with me. I think it would have been much easier if I would have known that I was not like everyone else. Then the fact that I was not like everyone else would have only been a fact. Not a failure. I don't know if that makes sense. I think what I am trying to say is even if you decide this particular label does not fit your daughter, you can still recognize that she is not typically wired. That knowledge, understanding and acceptance is probably more important to her than the label anyway.


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Dmarcotte
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11 Oct 2014, 1:36 pm

There are some great responses and I second the recommendation to check out the reading list provided at WP - it is a great place to start.

I would also like to add that high functioning autism is particularly difficult for people who are not familiar with it to understand (friends & family) They see what is in the media or remember what autism meant when they were kids and they just don't see that in your child.

Our daughter was not properly diagnosed until she was in second grade. There was a test she was given by the Alexander Center that showed in quantifiable numbers that she saw on the spectrum (I'm sorry I don't remember the name of the test) - I got a copy and emailed it to family every time they made a comment about my parenting style - probably not the most tactful way of dealing, but they finally understood that there were larger issues.

Having said that your child can get some interventions and may be able to 'learn' all of the skills she struggles with now. Mine has a non-verbal learning disability, but has learned how to interact successfully with her peers. Keep learning about what your child needs and what treatments are available - there are a LOT of opinions and there isn't a specific treatment that fits every child but there is almost always a treatment plan that can be created that will help.

Good Luck


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sidney
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15 Oct 2014, 6:28 am

There's a quote by Ari Ne'eman, 'Remember: you don't have to attend every discussion you are invited to'.
Then again, sometimes people are just rude, and you do have the right to express your pain when someone hurts you and explain why it's hurtful.



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15 Oct 2014, 5:11 pm

sidney wrote:
There's a quote by Ari Ne'eman, 'Remember: you don't have to attend every discussion you are invited to'.
Then again, sometimes people are just rude, and you do have the right to express your pain when someone hurts you and explain why it's hurtful.


True. Fortunately, I'm not facing jerks, I'm just hearing off-the-cuff, well-intentioned remarks from preschool acquaintances and others that we will be spending a lot of time with. Comments like, "But she's doing so great! My kid does that, too. I don't see any different behaviors." None of it is stuff that should be upsetting, but I didn't quite know what to do with it. It's already easier to find a response. I've appreciated the advice here. When I needed to discuss specifics with someone in our lives, I was able to effectively make my point with some words borrowed from you all. I said something along the lines of, "Here's what's happening: XYZ. I know these are pretty universal toddler traits, but you might not have had the opportunity to see her at her extreme yet..."



momsparky
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15 Oct 2014, 6:53 pm

I don't remember if this suggestion was out there yet, but our standard answer for DS is "except when he's not" or "except when he isn't."

E.g. "He's VERY high-functioning" (except when he's not.)



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15 Oct 2014, 9:05 pm

I think most people who say, "He's so high-functioning!" think they're giving you a compliment. It doesn't occur to them that it might come across as minimizing your child's difficulties or denying his diagnosis.
Imagine if you said, "DS has autism," and they said, "Yeah, I could tell right away something was wrong with him. He's really odd." :lol: Clearly they can't say THAT, so they pretend they haven't noticed, instead.



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15 Oct 2014, 9:28 pm

YippySkippy wrote:
I think most people who say, "He's so high-functioning!" think they're giving you a compliment. It doesn't occur to them that it might come across as minimizing your child's difficulties or denying his diagnosis.
Imagine if you said, "DS has autism," and they said, "Yeah, I could tell right away something was wrong with him. He's really odd." :lol: Clearly they can't say THAT, so they pretend they haven't noticed, instead.

This is so true. Except unfortunately I've encountered some people who DID say the equivalent of "I can tell something's wrong with your child, so I don't want anything to do with you or your child" And more who don't say this but they avoid. It's actually the nicer people that might question the diagnosis. And many times what I tell myself is that the questioning reflects the person's ability to accept and adapt to the individual child. Makes me feel better to think that way, and it's true! People who accept and adapt tend to bring out the best in us all.



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16 Oct 2014, 1:07 am

Waterfalls wrote:
It's actually the nicer people that might question the diagnosis. And many times what I tell myself is that the questioning reflects the person's ability to accept and adapt to the individual child.


Yes! And these are primarily the people I meet and those that I meant in this thread. Someone said it further up that it's not intended to minimize difficulties but it can feel that way. So yes, thank you for the prompts. I like the idea of a quick, "Yes, she's doing great! Except when she's not, which is why we're seeking help." My family is fortunate to have a huge group of adults in my kids' lives who want to say the right thing and are awaiting my instruction on our next goals and how to help. Three weeks or so into the ASD diagnosis, I don't think this topic will continue to be an issue moving forward. Well, until the next time we're with a new group, but by then I will have had more practice.



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26 Oct 2014, 8:56 pm

[quote="DW_a_mom"]I am going to suggest you continue to do your research, however, since it sounds like you aren't 100% on-board yourself. You will find in all this process that your instincts are key, so never ignore them.

I was shocked the first time I heard the ASD level for my son, who was highly interested in being social and quite engaging with adults. But it didn't take that much reading for me to realize that it 100% was my son. Other parents, however, may end up concluding differently, and no one knows our children better than we do.[/quote

Yep pretty much the same for me. I was completely convinced in fact, that my DS dint have autism, then I hear he most likely has Aspergers (DSM-IV). And when I did my research I was 100% convinced it was the right diagnosis.

What I tell people is that they don't live with him. I say "live with him, then tell me what you think"

And the bottom line, I don't care what others think. I know what I see, I know what his issues are, and I don't care what an onlooker thinks. Also, I say, "yes, I am thrilled he can hold it together in certain situations so others don't notice any differences!"

hang in there this is a LONG ride you are on!


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findingaplace
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28 Oct 2014, 9:53 pm

I try to just politely ignore the comments now. I have two with AS and a third I suspect (she's only two but same deal as the other two at that age). They still get to me sometimes but only if they come from someone I love. I don't tell many people, it's on an as-needed basis and only with those that I trust because people are too judgmental and have a "classic autism" picture in mind when they think of AS/ASD. I try to educate when necessary but otherwise I try to let it go.

Strangely enough, my husband first jokingly pointed out our son did much of the same things a couple of characters in TV shows/movies did that had AS and he was one that said later on "oh it's just normal". He went back and forth too but is not in denial any longer. I had already been told he had SPD and on instinct began my research. I wavered back and forth because family/friends and even some GP's told me that it was just "typical" behavior until it wasn't anymore.

I hope you find a way to handle it that is right for you. Everyone deals with the comments in their own way and we all find comfort in it eventually.



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29 Oct 2014, 8:43 am

findingaplace wrote:
Strangely enough, my husband first jokingly pointed out our son did much of the same things a couple of characters in TV shows/movies did that had AS and he was one that said later on "oh it's just normal".


I find this to be a bizarrely common response, especially in people who know DS better and have actually seen him at his worst (he can be pretty stereotypical on a bad day.) We really need to find a way to address the stigma; I think that's what people are reacting to, and it makes me wonder how many other parents there are out there who can't see what is right under their noses.

Tangent: the other day, on a Facebook page for parents in my school district, a Mom posted asking if any other parents were raising a child with ADHD. A lively discussion ensued with all kinds of people talking about their kids' issues (relatively) openly. I realized that I wasn't about to post about my son on a forum where his name could be attached to his diagnosis...in large part because I don't think it's fair (we've always told him the diagnosis is HIS, and he is allowed to decide who knows and who doesn't) but partly because there is more stigma associated with autism than with ADHD. These Moms were talking about it with no more concern for privacy than if it were hair that was difficult to style. Sigh.



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29 Oct 2014, 5:56 pm

On the tangent, I tend to say the word aspergers about my daughter (or me) when it seems like something is obvious but likely to be misunderstood. Nice people argue less about being given a label for what they've already noticed than when told a label for someone they think is normal (whatever that means). As for the not so nice people, not much to be done other than survive them.

I think a lot of kids who get diagnosed with ADHD seem obviously hyperactive to their parents, who think everyone thinks the same thing. So I'm not sure they realize it might not be something everyone is thinking and talking about that they even could keep private.



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29 Oct 2014, 6:04 pm

But beyond the privacy issue (my son discloses whenever he feels it is needed, but he's old enough to do it on his own) I think there is less stigma associated with ADHD than autism. I suppose the flip side of that is that there are higher expectations of kids with ADHD as well (most people don't "believe in it," for one thing, and those that do often expect the symptoms to be "managed.")



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29 Oct 2014, 6:09 pm

momsparky wrote:
But beyond the privacy issue (my son discloses whenever he feels it is needed, but he's old enough to do it on his own) I think there is less stigma associated with ADHD than autism. I suppose the flip side of that is that there are higher expectations of kids with ADHD as well (most people don't "believe in it," for one thing, and those that do often expect the symptoms to be "managed.")

I agree. It's almost like adhd is cosmetic, and sometimes honorable. ASD doesn't have that positive to neutral valence. I wonder how much of that is drug companies working to destigmatize adhd to help with marketing?



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29 Oct 2014, 7:36 pm

Interesting thouight...it's also interesting that the "ADHD heroes" are held in high esteem - often rock stars and sports heroes, but the autistic savants are still viewed as bizarre in some ways, like their talent is somehow freakish like an extra toe or something. (Grrr...)

It isn't as though there aren't rock stars and beauty queens and models with AS, but somehow, if they aren't considered weird, they are "overcoming" their AS, where the ADHD people are where they are "because of" their ADHD.



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30 Oct 2014, 3:46 pm

ADHD was "automatic fail disease" back in the 80s. It kind of occupied the place that autism/Asperger's does now. I remember when I was a kid, it was the label that people whispered behind their hands about and people would homeschool their sons to avoid. I grew up with a lot of the fruits of that; it didn't look any better than the fruits of ASD being "automatic fail disease" today does. You'd think we'd learn.

Parents and people who had managed to fly under the radar got pissed about it all and started self-advocating. Thom Hartmann et al.

And then something came along to take ADHD's place as the media and scare-mongering whipping boy. US.

I guess 30 years from now, ASD will be OK and something else will be the hot new the-stigma-alone-is-enough-to-kill-you thing.

Baffles me why there always has to be some "devastating" whipping-boy condition. Human nature I guess????


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