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aurea
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26 Mar 2008, 3:37 pm

I am complaining!

I had a phone conversation with a good friend of mine last night, she lives in another state and her daughter was going in to see a specialist yesterday about learning/development difficulties.

This conversation resulted in my friend telling me that whilst her daughter does display asd type behaviours she isnt autistic. She apparently is way behind in some areas (scoring 2 on a scale of 100). I got a lecture on how aspergers wasn't autism "it's a spectrum" and should never be called autism. asperger's is something they made up to cover those people with some behaviours.

She then went on to say that her doc told her it's better if they don't say her daughter has any type of autism, she will get more help this way. What the? Her words were we don't want to change her personality.

I was then told that autistic people hand flap all the time and can't show love, and they never look you in the face!

I tried to tell my friend that someone explained autism to me as a rainbow, kanners/classic autism being down one end and aspergers being up the other with lots of variation in between.
I also went on to say that, each symptom if looked at individually most people will display at some time, however it's when you have enough symptoms from each category happening regularly that you get a dx. She said yes all kids do the stuff that I have said J does.

She then went on to say that its a spectrum not autism! J has been dx'd with lots of stuff how can I trust anything. I asked what she was talking about, I said yes he got an adhd dx but that only fit somethings not all and that is what has been changed. She firmly believes that J had been dx'd with hemophelia, I said no never he had a bleeding prob after a surgery and we nearly lost him and still to this day even though he has been tested for everything they still don't know what caused it. It has been called an undiagnosed bleeding disorder. She said that I was told he had brain damage, I'm like what the? No he had what was called an infarct after the bleeding issue, that the docs called a minor stroke and it was suggested to me that we would never know if there was any lasting damage, however he also had another scan later which came back with an all clear. So there is some confusion as to what exactly happened. She went on to say yes but you were told he had asthma now you've done all the tests and he doesn't.

I am sick of justifying myself and explaining J's dx to people. I get so angry, this is meant to be a friend does she think that I am imagining J's problems.

I know in the past when she has come to visit she has told me that I have over reacted to J's screaming when he has been hurt. her attitude is if there is no blood don't worry about it, mine is if J is screaming I deal with it as quickly as I can otherwise it can and has dragged on for hours. she puts J's starring at her partner down to he is jealous that her girls have their dad around. J probably is , but J stares at everyone, he climbs on everyones laps she forgets that he does this to her to. J is also fasinated that her partner is aboriginal and very dark.

I am just so tired of explaining/justifying everything! What do people think any parent with a kid with aspergers gets out of saying hey my kid has aspergers?
All I expect is not even sympathy but the ability for others to think outside the box. My kid might be doing something,reacting or not reacting in a certain way, that doesnt mean xyz but possibly means efg. I'm not explaining this well. I do know that J's long term memory is just that, real long if I don't do what I do when I do it, he remembers these things and can recall event years later and have meltdowns over them.

I did read that people lose family and friends over dx's but I didn't expect this level of resistance. I just don't understand J's dx effects no one but him and what my son and myself do to help him. the dx in no way changes him, I don't want him changed. Just a little understanding and someone to listen some times, and I don't think thats a lot to ask for.

Any way sorry for venting guys, I am just so tired of it all.



ster
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26 Mar 2008, 3:49 pm

so sorry you had to deal with this.........we've talked to people who understand. we've talked to plenty of people who don't understand, but at least accept the dx....we've also talked to people who don't understand and never will- these are the people who frown on everything you do & blame everything your child does on your poor parenting skills. terribly frustrating. i try to remind myself that they are simply uneducated about the ins and outs of my sons dx, and because they don't have to deal with the issues, they just don't know how terribly difficult things can really be..............some days, it's just too much to deal with those sorts of people though



annie2
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26 Mar 2008, 3:53 pm

Don't blame you for being tired and frustrated. Obviously, your friend is misinformed. Don't worry - probably one day she'll come back and apologise for speaking in ignorance.

Do you have likes of a Tony Atwood book to loan her, particularly since she is dealing with the "AUTISM(!) spectrum" herself?



aurea
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26 Mar 2008, 3:57 pm

Thank you Ster,
I know there are plenty of people who have no idea, but to have a doctor tell someone that aspergers is a made up syndrome and not autism, which I think confirmed in my friends head that it is all in mine, just made it all worse.

Dont get me wrong but in some ways asperger's is harder to deal with than full blown autism, because these kids appear so "normal" and it's not well heard of.



nannarob
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26 Mar 2008, 3:57 pm

There are none so blind as those who will not see; there is none so deaf as those who have their head in the sand!


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I think there must be some chronic learning disability that is so prevalent among NT's that it goes unnoticed by the "experts". Krex


aurea
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26 Mar 2008, 4:00 pm

Annie,
No she is in another state and I dont think it would matter anyway what I said. I just feel for her daughter, who does have much bigger issues than my son, but on the other hand is getting school support which my son isn't getting. ! !! !! So bloody frustrating.



collywobble
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26 Mar 2008, 4:11 pm

i feel your frustration. sometimes i just want to grab people by the scruff of the neck and give them an earful! you just can't get through to some people. it doesn't matter how many different ways you try to put it!



katrine
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26 Mar 2008, 4:13 pm

Know the feeling - so frustrating! It makes me mad and sad at the same time. People sometimes just don't want to know.



KimJ
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26 Mar 2008, 4:28 pm

I recall the people that were "closest" to me and my family were the most resistant and the most critical of the autism diagnosis. I remember telling a so-called friend that the neurologist suggested autism and she replied, "He sounds like an as*hole!" Like the doctor was throwing around insults?!
My mom, after 6 years of this, still "forgets" or doesn't understand and keeps saying, "I thought you were told he wasn't autistic?"
I had another friend who nannied a couple of kids keep telling me, "all kids do that" to everything I ever mentioned about Pop's autistic traits. I got tired of it too.

I would doubt that this "friend's" doctor really told her all that about Asperger's. It sounds like she misunderstood what she was hearing and picked the easiest to remember half-phrases. "It's not autism, it's a spectrum"?! That makes no sense.
She may be grieving for her daughter but that doesn't give her the right to criticize and attack you. I'd let her stew in her own juices.



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26 Mar 2008, 4:29 pm

I've people very resistant to the term "autism" because of all the missunderstandings that surrond it. Hence, the need to cling to terms like Aspergers and PDD-NOS and insisting that they are "separate" from Autism, even if technically on the spectrum.

You know what? I just go with it. If that is the way someone else needs to veiw the world, so be it, as long as they understand what I am telling them about my unique child.

Labels are only as useful as the actions they provoke. If you can get that action without the label, I say leave it be.

I once greatly offended a family friend when I explained something my son was doing as, "oh, he's just doing the autistic thing right now." This man knows my son has been diagnosed as having Aspergers, and honestly I would put money on the fact that both he, himself, and his youngest daughter (just now 5) also have it. Which is probably why he was so quick to say, "Asperger's isn't Autism. You shouldn't say things like that." He does not WANT Aspergers to carry that strong a connection with Autism. I could see he was upset by my "loose" use of the term. I simply amended my statement and said, "well, there are a lot of behaviors in common, and right now my son is involved in one of them. That's all I meant."

We're still in the midst of a huge transition on how society understands the spectrum. The road is going to be bumpy. Ride it.

Not to say, btw, that your feelings and frustration were not valid. Just to suggest that you will find more peace if you can let go on the terminology.

I'm also realizing that I may not have fully understood the interaction you described in your post - so, if what I've written really is a miss, doesn't apply - ignore it.


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equinn
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26 Mar 2008, 5:29 pm

Why even bring it up? Why say "he's doing the autistic thing right now? I don't think I'd ever say this. People wouldn't understand and feel it's an excuse.

If it's apparent the child is autistic, the parent wouldn't say anything, right? There's a silent understanding. If it's subtle, and the other person doesn't understand spectrum behaviors, too bad. When you open the floor, label how he's acting, then you're allowing for discussion about the autiism.

If your child were gay and hugging his/her partner in front of a neighbor, then you wouldn't say "Oh, she's just doing her gay thing."

Just accept it for what it is--If you accept it, then others will either not accept it silently, or accept it silently. No discussion is necessary.

Also, I don't always identify my son's behaviors as NT or autistic. Again, it is what it is.

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ster
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27 Mar 2008, 5:58 am

i've actually had the district psychiatrist & my pediatrician tell me that aspergers doesn't exist...............guess i'm used to hearing this nonsense.......actually, i think my pediatrician has aspergers :wink:



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27 Mar 2008, 9:07 am

I suspected my psychiatrist had AS before. He seemed uncomfortable with nonconformists because he worked so hard to conform and be normal or use his skills for good, and now he's a psychiatrist and he seems a bit awkward and a tiny bit anxious himself, or just not used to people (but he sees them every day!) and is relieved when you socialize, or when you admit you want to be famous, because most people do. :lol: This is the world he has finally gotten used to and he doesn't want it to change because then he wil have to readjust again!



sinagua
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27 Mar 2008, 10:07 am

aurea wrote:
Dont get me wrong but in some ways asperger's is harder to deal with than full blown autism, because these kids appear so "normal" and it's not well heard of.


Quoted for truth (QFT)!



equinn
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27 Mar 2008, 3:06 pm

But--just imagine--what if it truly didn't exist? Many people were successful because they forced themselves to compensate--think about it?

I say this, but at the same time, my own son was abominable in kindergarten and I didn't understand! Finally, in grade 3, he's settling into life--stilll he says inapproriate things that make you say--huh? He has other quirkyish friends, which is just fine.

Thank goodness for Asperges/HFA. Those underlying quirky things are important to understand. I see the world of labels in a new light.

equinn



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27 Mar 2008, 4:24 pm

equinn wrote:
Why even bring it up? Why say "he's doing the autistic thing right now? I don't think I'd ever say this. People wouldn't understand and feel it's an excuse.

If it's apparent the child is autistic, the parent wouldn't say anything, right? There's a silent understanding. If it's subtle, and the other person doesn't understand spectrum behaviors, too bad. When you open the floor, label how he's acting, then you're allowing for discussion about the autiism.

If your child were gay and hugging his/her partner in front of a neighbor, then you wouldn't say "Oh, she's just doing her gay thing."

Just accept it for what it is--If you accept it, then others will either not accept it silently, or accept it silently. No discussion is necessary.

Also, I don't always identify my son's behaviors as NT or autistic. Again, it is what it is.

equinn


Good points.

If I recall, in this situation it was preceded by a comment from the other person, "are you planning to simply allow him to act like that?" Um, yes, I was, lol. And that was my explanation, rightly or wrongly.


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