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ASPartOfMe
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11 Dec 2015, 12:00 am

Autism is getting diagnosed earlier, making treatment more effective, says a Utah researcher

Ableism in story, the words "normal life", "red flags" and the usual puzzle pieces, and how bieng autistic bankrupts your family


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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11 Dec 2015, 5:06 am

Awwww, it wasn't THAT bad.

Yes, I get a little IRRITATED with the "neurotypical normative" schtick. Realistically speaking, if you add up ALL the dif-orders (ASD, ADHD, MDD, anxiety disorders, ad infinitum), people who don't have ANYTHING over the course of, say, 50 years are probably minority-majority. I don't actually know ANY people who don't have at least one mental "illness", personality "disorder", developmental "disability", or neurobiological "disorder".

And yes, I WANT to hear more mainstream discussion about ABA not being the only viable, or even necessarily the best available, therapy. I WANT to hear the MSM talk about burnout, and dehumanization, and what it does to a person's heart and mind and spirit when you label them "broken" and try to "fix" them by stuffing them into a mold they're never going to fit. I WANT to see "quiet hands" die an expedient death. I WANT to hear "our side" on the local morning news. I WANT to see insurance pay for MORE than JUST ABA, and I want to see the end of preschoolers with therapy that amounts to a full-time job, because that's torture.

But-- for now, it IS still a "neurotypical world." It IS still essential for all of us variously uncomfortably different people to go as much of the distance as we possibly can to "meeting in the middle," even if that's MORE than halfway. It IS important to get insurance coverage for the help that IS needed, because any kind of professional teaching outside the public school system IS expensive and most American families are barely hanging on as it is (and I reiterate, I want to see ABA lose it's place as Sole Unchallenged King of Therapies, because that's a primitive attitude that should have been left in Skinner's, if not Pavlov's, lab). And it IS easier to make those adaptations the younger you start.

I'm glad I didn't get saddled with 40 hours a week of ABA. I'm glad I didn't get slapped with "quiet hands." I'm glad that pediatrician told my grandmother, "She very very smart-- take her library, she do great things!! She very very shy-- take her park, she learn sometime!!" instead of "She have terrible disease-- must fix it!!" when I was about 4. I'm glad that the ONLY people calling me "ret*d" were the bullies and my maternal grandfather's self-hating Aspie siblings.

But I'm also glad that Grandma had an ASD husband and an ASD stepdaughter and DID recognize the signs of "something, she didn't know what, something like them" when I was about 2. I'm glad she spent all those hours on the phone arranging one-on-one playdates for me. I'm also glad she spent all that time explaining to me how to play with other kids. I'm also glad she realized, somehow, that she was going to have to put A LOT of effort into teaching me to have enough polite social manners that I could go to the grocery store without offending someone by the time I was 18, and also that I could speak to a cashier at a grocery store or fast-food place without shutting down the majority of the time. I could have done without, "Don't walk like that! Don't do that with your hands! Oh my Sweet Jesus, people will think you're ret*d!!" But, hey, you know-- she was born in '25. She REMEMBERS the American eugenics movement, in agonizing clarity. She has her own anxiety disorders. She did the best she could, and by and large I'm grateful for the normalization-oriented make-it-up-as-you-go early intervention she gave me.

Demonization isn't good. Norm-worshipping isn't good. But neither is leaving the next generation unrecognized to grow up as "feral autistics," if you will. Neither is Snowflake Syndrome-- it's just the flipside of I Am Autism.

If the neurodiversity movement wants to be taken seriously, maybe getting our panties in a public knot over puzzle pieces and terminology like "red flag" isn't the best idea either.


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ASPartOfMe
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11 Dec 2015, 8:32 am

First of all I do think the trend towered diagnosing younger and younger is a bad thing because

1. Toddler and infant behavior is in many ways similer to autistic behavoir. this will lead misdiagnosis and when misdiagnosed people recover typically because they are typical this will increase the idea that the whole autism thing is fake and whatever was bieng done when the person recovered will believed to be a cure.

2. This will increased the use of ABA and other behavioral therapies at a younger age. Behavoiral therapies will be more effective then genetics in intercepting or deflecting autism because brain wiring forms very rapidly in the earliest part of life and genetics has proven to be extreamly complicated.

This story would have been unnoticible a year ago but there has been a noticeable shift in the media since Neurotribes book came out.

Words do not matter but the attitude behind them does. If the attitude is autism is wrong Behavoiral therapies will be used as they have been to attempt to make the person non autistic but more effectively. If there is more acceptance there is a better chance for the goal of the therapies will be to help the person use thier autism better.

If everybody just accepted the world is NT and did not b***h, the changes that have happened as inadequate as they have been would not have happened.

Meeting the NT world almost all of the way has failed and will continue to fail.


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Last edited by ASPartOfMe on 11 Dec 2015, 10:12 am, edited 1 time in total.

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11 Dec 2015, 9:41 am

Yes, let's wait until the kids have been bullied, have dropped out of school, and have been in trouble with the law before even attempting to make a diagnosis. Let's not bother trying to find out why pre-schoolers are non-verbal, clumsy, fixated on certain objects, and have issues with sensory overload. Let's just take a passive, wait-and-see attitude and hope that they grow out of it.

Yeah, that's the ticket ... on a runaway train to living Hell!


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ASPartOfMe
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11 Dec 2015, 10:07 am

Fnord wrote:
Yes, let's wait until the kids have been bullied, have dropped out of school, and have been in trouble with the law before even attempting to make a diagnosis. Let's not bother trying to find out why pre-schoolers are non-verbal, clumsy, fixated on certain objects, and have issues with sensory overload. Let's just take a passive, wait-and-see attitude and hope that they grow out of it.

Yeah, that's the ticket ... on a runaway train to living Hell!


I am not talking about the pre school years never mind the teenager years. The story is talking about diagnosis at 18 months old. I have read other stories discussing diagnosing at 6 months old. And if the result of finding out is 25-40 hours a week of behavioral therapies the "gold standard" treatment with the message of your core traits are wrong that is as harmful if not more harmful bullying and abuse then the traditional kind. Forcing any toddler to do anything 25-40 hours a week is abusive.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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11 Dec 2015, 11:59 am

Quote:
1. Toddler and infant behavior is in many ways similer to autistic behavoir. this will lead misdiagnosis and when misdiagnosed people recover typically because they are typical this will increase the idea that the whole autism thing is fake and whatever was bieng done when the person recovered will believed to be a cure.



I do agree some doctors are way too quick to diagnose autism. Some kids are just slower than others and develop at their own pace. My son was late in things but he is still normal. He didn't talk or babble and he didn't jump at 18 months or climb but he does all that now. He didn't even hold a pen or pencil and scribble but that was because I never gave him those because I didn't want him to draw on walls or tables. Now he talks well. My mom thinks he might be ADHD because he is so hyper and he can't even wait or have the patience. Plus he gets impulsive so he just does things without thinking. But he is four so I don't even know how much of it is normal behavior. He is my first child. My husband thinks he is a lot like his cousin who is ADHD because he was rambunctious when he was little. Sometimes I prefer the wait and see approach. Then we'll see when they get to kindergarten or something.

But I can see how the quick diagnoses thing can be damaging to the ASD community because when kids get "cured" parents are going to think you can teach it out of children and more people will think it can be cured when those kids probably never had it in the first place, they were just slower than typical is all.

But if a kid is a little behind so they get early intervention but no diagnoses, then that is fine and can't see that as damaging. They could still have something and you never know.


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11 Dec 2015, 9:06 pm

I can understand why some people wouldn't want this kind of rampant diagnosis going on. The last thing you want is for ASD to become the 20XX version of ADHD. I was diagnosed with ADHD when I was 5 years old right smack dab in the middle of the time when psychologists, teachers, and school administrators were viewing it as the "scourge that will destroy our children". If you got hit with that diagnosis during that time period you were screwed. The administrators tended to treat you like a plague they didn't want to have to deal with and they loved to blame everything on you and your "condition". I had one ahole of a principle I'd love to beat senseless these days because of the crap he put me through.

On top of that no one understood what effects the drugs they gave you did to you in the long term. I was over prescribed Ritalin and it messed me up good to the point where it's only been recently after almost 17 years of not being on that crap that I'm finally startling to normalize. Trust me you do not want that crap happening with ASD, it will be hell for a lot of kids many of whom don't even have it to begin with.


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12 Dec 2015, 6:36 pm

I was also diagnosed with ADD in the mid 90's and to this day I am still not sure if I really had it. I was suspected as having ADHD and my psychiatrist thought I might meet the criteria. But my mom contradicts it saying I never had it when she had told me ten years ago I truly had ADD but it wasn't the right diagnoses. But I never had enough for a ADHD diagnoses, only enough for the ADD label.


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Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.

Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.