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" In a box not a bottle" Asperger's revealed


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Vic,

 

I came accross an article this morning, and wanted your input: link removed

 

"Just as homosexuality used to be seen as a disorder but is now accepted as part of the range of human diversity, a neurodiversity proponent sees the classifying of autism as a disorder as a socially intolerant mistake."

 

(rant warning)

 

I got really annoyed by it, bolded statement in general. How dare they compare it to homosexuality. If I were gay, I'd be offended! Autism IS a disorder, homosexuality is not! I don't understand this movement at all. They don't want a cure OR treatment? It makes no sense to me. I believe in being tolerant, sure, like it's fine for them to have eccentric interests, and it's okay for them to think differently than others and we shouldn't shame them for ANY of that because that's wrong, but this is an issue of FUNCTIONALITY. It makes my blood boil to hear these people, who clearly don't have autism, say "Well, they are just different, nothing is wrong, what's wrong is that society doesn't except them." Well, many autistics can't bloody talk. My sister didn't communicate AT ALL, and wouldn't have without early intervention medication and therapy. Many suffer from anxiety, have GI issues, have debilitating sensory issues, etc. My sister has described her early years as a "fog". How in the heck is that okay?

 

If you can't communicate, something is wrong.

If you can't go out in public without having a meltdown, something is wrong.

If you are a picky eater to the point that you are having nutritional difficulties, something is wrong.

If you are unable to do your ADLs, something is wrong.

If you have no social skills whatsoever (I'm not talking about being suave, I mean, unable to hold a basic conversation, say please, etc.), something is wrong.

If you have crippling anxiety to the point that you can't tolerate small schedule changes, something is wrong.

 

Yeah, my sister and brother were resistant to treatment but they got it anyway. I can see why many people would not want it and would rather just be left alone. Treatment can really suck! It's not a fun experience at all. It's long, grueling, tedious, and repetitive training. It's not fun for the patient or therapist. But that's their obstacle in their life. We all have our own struggles. If we listened to my brother and sister saying "I don't want to go", then my sister wouldn't be able to communicate properly and my brother would still be locked in his room due to anxiety and he wouldn't have friends.

Both are now happy that they got treated and say they feel a lot better. My Aspie friend says he wished he got treatment when he was younger.

 

Sorry, this just really chaps my bum. I love my family. I have no idea what they are going through. I am thankful that they got treated and are doing okay now but everyday I wish for a cure because life is still really hard for them. If I had to literally give up a leg in order for them to be cured, I would.

 

My worry is that this way of thinking will allow for reduced autism treatment/cure research funding and a glut of people who have autism and are either not functioning or low functioning due to their disorder but treatment will not be encouraged.

 

Sorry if I offended, those are my thoughts.

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It is ok Fudgie everyone should be able to speak their opinion.

 

I have been on a few forums that is specifically for autistic people. And watched videos made by autistic people. And the vast majority don't want to be " not" autistic. They don't want to be like us. I think helping their anxiety and G.I. issues, yes that should be done. Helping someone to communicate absolutely. But trying to cure or trying to make them "pass" as neurotypical,no.

 

The danger that they see in research is that people are trying to find a genetic marker for an autism before the baby is born so they can then abort neural atypical babies.

 

On a lot of these forums populated by mostly autistics they actually despise totally ABHOR neurotypical people. They feel neurotypical people, their parents and their family ,their friends have abused put them down and tried to take who they are and destroy it. I have to say in a way I agree with them. They believe themselves to be natural brain variation. Now ,that's not the way everybody feels of course but a lot of them do feel like that.

 

I know for my son he is entirely intervention resistant and at 18 ish if he's completely resistant there's no point and he has developed his own coping methods. And he's absolutely fine with who and how he is. The way he sees it if you don't like it you can hit the road.

 

Will the vast majority of them still need help and support ? Absolutely. And accommodations ,absolutely.

 

I have 1 foot in each camp. And I see my son who is happy to be who he is. And I think we should turn to autistic people to ask them HOW they want help. I don't think we ask THEM enough. We will never have the autistic experience but they do.

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I feel like that too, 1 foot in each camp, but I put most of my weight on the "treatment" foot. I am fine with letting them have eccentric interests and such, totally fine. I don't even think they should feel like they need to be in romantic relationships or friendships, as long as they are happy and feel accepted. However, if they are not functional, it's a real issue because then society has a whole has to pay for it. I don't see the goodness in letting them dysfunctional or not functional if we as society have to foot the bill for that when treatment has been shown to help.

 

Both of my siblings have said that they wished that they didn't have autism, because treatment is hard. My Aspie friend said he wishes he didn't have it. I've never, ever met an autistic person who said that they didn't want a cure but I believe you 100% when you say that you've encountered these individuals. Now, my siblings didn't want autism but they didn't like their treatment. Their medicine used to make them sick. Sensory issues, etc. However, NOT getting treatment was never an option for them (my sister was dragged kicking and screaming, eventually she submitted and it become part of her routine, she was so young when she started) and they were never exposed (until much later) to people that had autism that weren't treated. The school wanted to put my sister into a home essentially and then a special school and my parents fought for her to be integrated and she was never in "special ed". She had a tutor, paid for by public school, and that was it.

 

People aborting autistic babies in the future? I don't think autism will go away completely. People can test for and abort Downs kids and we still have people with Downs Syndrome. I truthfully don't see it as a bad thing. If someone truly doesn't want or can't handle having an autistic child, I think it's better that they abort than have the child go unloved. Even my brother agrees with me on this.

 

The dysfunction part, I hate that part. It's such a defining disorder for my whole family and yet 3/5 of us don't know what it's like too have it. I've read that it's been described like an extremely mild but slightly bad psychedelic experience (in terms of thoughts, not the visualization), the confusion, the thought processes, how they see patterns in EVERYTHING, hyperfocus, and even the absence of time perception. Oh, and isolation.

 

It's horrible.

I hope for the day that it is no longer here and me and my family will have long since passed on and we'll be remembered well, but people will say "I'm really glad that we no longer have autism".

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I think happiness is a good thing. My sibs are happy...now at least, they didn't used to be all the time. It was a long road. My brother will be mostly independent (with some help) and my sister will need help. Truthfully, if she were more dependent, I wouldn't be able to watch over her after my parents are gone. I am happy being near her/living with her, seeing her everyday, overseeing her finances as she makes purchases, reminding her of things, and helping her plan long term, but she does the day-to-day and I am very happy about that.

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I was reading more earlier, about opponents against ABA therapy. I love ABA therapy. My family credits it with bringing my sister "out of the fog" and getting her much more functional and able to talk, instead of sitting there in silence stimming herself by clanking things around. She has been in ABA since she was 3-4. We didn't know she had autism at the time but things weren't right so she got thrown into therapy and medication. My brother followed afterward. We had therapists in and out of the house around the clock. When she wasn't in school, they were there. I still remember that.

 

My parents enlisted my help from an early age, to watch her and see if there were changes in her behavior as her meds were fiddled with. She was put on some drug and welp, there we go back to stimming again. Just sitting there stim stim stiming. I was about 6. I remember going to my parents and saying "she's tapping again, this medicine isn't working" and she got her dosage fixed and the tapping ceased.

 

I don't know where she would be without it, I truly don't.

 

My family is so odd. We do this thing, if someone is freaking out over details or being repetitive, we say "stop being autistic". My sister tells me to "stop being autistic" if I repeat myself often. I think the autistic rights groups would hate us, truly. The local medical community considers my sister to be a success story, a testament to the power of therapy and medication. She will be on meds for life and will always need some guidance but it's okay. My sister did get to talk to Temple Grandin though and she thinks she's a cool lady, so that's good I guess.

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Wow, I would never tell my son to stop being autistic. I find that rather harsh. I don't mind his stimming at all. It is OK with me. To me he is who he is. But I can't tell other parents what to do because their autistic experience is different. But I do want to listen to the opinion of autistic people because I feel it's important.

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To us, stimming = something wrong with medication. If she's on the right dosage, she won't get anxiety and she won't stim, which is good because she's calmer and doesn't feel the need to stim and will fill her time with other things, things she likes or things that need to get done, like all of her animal chores. I don't think stimming is "weird" but I think it can be indicative of an issue, as it was for my sister. She doesn't stim anymore though, not with meds. Everyone in my family, including my siblings, sees autism as a disorder, something that's not their fault but it's not something great either, so it's not harsh for us to say that. No one takes offence, heck even my sister says it to me when I'm doing something that she perceives as autistic.

 

But hey, different strokes for different folks. My brother finished college and with some help, should be fairly independent and my sister can hold down a full time minimum wage job after she finished her job training program for autistic/MR folks. Both are properly medicated, engaged, and happy. It's even better than what we thought was possible many years ago. Had my parents followed these organizations that reject treatment, my sister wouldn't be able to talk and she'd be stuck in the autistic home that the district wanted to put her into, I know that to be true.

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Oh yes, both of them really. I wish everyday that they didn't have autism so their lives could be easier, they could have other relationships, and they wouldn't be limited like they are now. Breaks my heart still and I have trouble talking about it without tearing up.

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I am really proud of my son he's trying to start his own group for playing Vanguard. He made a poster and then I took him over to the center to have it printed. He made it up on the computer but right now my printer is out of ink so I took him over to the center and we print out a few copies. He went and talked to the store owner and asked to use his space on Saturdays! He has taken this all upon himself and talked to the owner himself. I am so proud of him.

 

Also, when he goes to college he wants to start a club from moviemaking. It's a certain type of movie I'm not sure what he's talking about but he was trying to explain it all to me.

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