Difference or disorder?

[GypsyMoth]

I am still relatively new to this and I don't think I understand the issues well enough. But I am getting the picture that there's a clear divide, sometimes between people who have autism and those who treat autism, and sometimes the divide is a more type-type match as in between this scientific study and that scientific study.

Why does science purport that autism is a disorder that needs to be treated?
A disorder would confirm there is something wrong with me; a difference is more in line with having a different operating system.

This article falls on the "autism is a disorder" side.

Brain Changes in Autism Are Far More Extensive Than Previously Known

UCLA study is the most comprehensive effort ever to study how autism affects the brain at the molecular level. Brain changes in autism are comprehensive throughout the cerebral cortex, not only confined to particular regions traditionally considered to affect language and social behavior. These a

scitechdaily.com

Thoughts?

 

[Outdated]

Strong thoughts. Strong feelings too.

Another term a lot of these people like to use is Disadvantaged. That one always makes me laugh. The term usually comes from people with half my intellect and a quarter of my physical abilities.

Poorly coordinated unfit and ugly morons think I'm the one that needs help, that I'm the one that needs to be Cured.

Sorry sunshine. I'm from the other end of the spectrum.

 

[Shamar]

It seems to be a matter of opinion, often with no scientific basis whatsoever. Some people and groups consider autism as a disease which needs to be cured (Autism Speaks comes to mind for this attitude). Others treat it as a different and useful way of thinking (Temple Grandin and many on this forum, including me). Many people consider it as a form of mental retardation with some exotic skill (blame Rain Man and similar movies for this). Thus, there is no consensus. Many studies are set up for the sole purpose of "proving" one opinion or the another (unscientific at best, scientific fraud at worst). In other words, is it a disorder? It depends on who you ask and the answer becomes both yes and no. If a person is unable to fully function in society, then it becomes a disorder (me for example), but if the person does not want the different thinking changed, it is not a disorder (me, for example, despite my frequent whining about the pain of loneliness). You are just going to have to examine your own case, and come to your own conclusion. Frankly, I would not trust or want any therapist or other expert to tell me what my conclusion should be. Ask around and continue to learn. In my experience, the more you learn, the better you can deal with it and be more comfortable with it.

 

[Alexej]

FWIW I prefer ASC - condition.
Disorder is pejorative IMHO, condition is not.

 

[Atrapa Almas]

Its complex. You can learn the story of autism and how diagnose/treatment has evolved in the book Neurotribes.

NeuroTribes - Wikipedia

en.wikipedia.org

Lets just say that functional autists were not autists some years ago. So Autism was equal to very low fuctioning people, and they had no idea how to help th...

...eir parents.

That non functional autism is just a part of functional autism and that functional autism and high capacities are very close neurodivergences is quite new. Very new.

 

[Jordy]

Developmental disorder or just disability. I see a lot of the same people that dislike term "high functioning autism" for undermining the struggles of autistic people also dislike the terms disability and disorder. Unfortunately you can't have your cake and eat it too.

 

[Ronald Zeeman]

By the time neurologists, figure out what autism is and whether it should be treated, I'll be dead, Currently, I do not spend a lot of time, worried about the true answer, just living my life until the end. A lot of us high functioning, just live our lives, no different than if I was left-handed.

 

[Gerontius]

I don't really feel disorder is perjorative, vecause I look at the word "disorder," when used in a scientific context, as meaning a sort of standard or mean. So I look at us as outliers because of a disorder. Course, that's one way of looking at it; other people who've placed more weight on being victimized in the name of "curing a disorder" might differ.

I woudln't want to not be autistic. That's a fact. This is all I know; it's like asking me if I would like to change everything else.
OK, maybe I'd try being neurotypical on for size. Maybe I'd enjoy the small talk, could treat navigating social life the way I navigate diagramming a sentence. Maybe I'd be less obsessed with horses and antique machinery and books and typewriters. Maybe I wouldn't be me. It's the same as if I tried on being a girl temporarily; I would have to be completely not-who-I-am if being a girl was who-I-am. Or if I was born as a different race--I'd have to reinvent the way I lived.

Science calls it a disorder, but my question is--do all disorders have to be treated? Must every nonconformity with the mean be sanitized, sterilized, brushed away by the scientific arts into a race of technologically perfected Ubermenschen? I don't believe that it's necessary to make everything perfect. To err is human. We don't have to be the smartest, best, or most profitable people in the world, but we must be who we are. If autism is part of that, maybe we should play the hand we are dealt.

 

[Neonatal RRT]

Broad transcriptomic dysregulation occurs across the cerebral cortex in ASD - Nature

RNA sequencing reveals widespread transcriptomic changes across the cerebral cortex in autism spectrum disorder, including primary sensory regions, in addition to association regions, as well as an attenuation of regional identity.

www.nature.com

I would not get caught up in the scientific language,..."disorder",...as it can cause some emotional reactions. All it means, for the most part,...is that whatever it is they are describing,...doesn't fit within the statistical parameters of "the norm", whatever that is.

Now, having said that, the findings appear to fit within the results of the Autism Genome Project which suggested a few things,...some 200 familial genes and some 1000 or so "de novo" genes,....as well as this concept of "genetic loading". Genes not only affect DNA, but also RNA transcriptional factors,...which this study also suggests,...ASD seems to have some "loading" on the RNA.

All in all, this also reinforces the idea of autism being a MEDICAL condition,...not some psychiatric or "made up" condition, as some might try to BS us with. Just another piece of evidence.

EDIT: I had some more time to review this article further. This is one of the most thorough pieces of research I have seen in a long time. Strong work by the research team on this one. I had some idea from previous work in this area that genetics, anatomy, microanatomy, neuronal migrational patterns, neuronal-immunity, biochemical pathways, etc. were at work in ASDs,...but in this research, they dove down to the molecular level and nearly 5,000 genes. Mind-blowing.

 

[Alexej]

doesn't fit within the statistical parameters of "the norm", whatever that is.

Thanks for your contributions @Neonatal RRT which I appreciate.

I often think that autists are outside the 2 Standard deviation mark on the bell curve - but that is just a bit of semi-statistical fun on my part.

 

[Ronald Zeeman]

to compare two or populations you need to compare some parameters what you would compare. things that are unique to each population. and independent and/or mutually exclusive. Easy to do.

 

[Neonatal RRT]

Why does science purport that autism is a disorder that needs to be treated?

Thoughts?

In some cases, the condition results in not mild or moderate difficulties in daily life and activities,...but sometimes severe. Context and perspective.

Working in the medical field for as many years as I have, there is this underlying mantra towards achieving or recovering "normal functionality",...whatever that may be. The intent is good. That said, "The road to Hell is a paved with good intentions." In some cases, "normal" will never be achieved, but it won't be without some attempt at it.

Those that have went through ABA and CBT,...or any other type of "therapy" or medications for their autism, knows darn well the pros and cons. There are those, like myself, that can cope with things 99.99% of the time with their intellect, knowledge, self-awareness, coping skills, supplements, diet, lifestyle, etc....and don't really need or want a "treatment". However, there are those that truly struggle in life and if someone could wave that "magic wand" and make it all go away, they would be first in line to make it happen for them.

 

[Neonatal RRT]

A disorder would confirm there is something wrong with me; a difference is more in line with having a different operating system.

Thoughts?

Semantics. If that "difference" is secondary to altered genetics, anatomy, physiology, biochemical pathways, etc,...then yes, it falls under the scientific definition of a "disorder".

Look. To be brutal and blunt here. Everyone loves their "fuzzy and soft" language to make ourselves feel better,...but autism,...it's not a "different operating system",...it's not a simple "neurodivergence" or "neurodiversity",...it's ALOT more than that. It's a medical condition.

Now, we can get our underwear in a bunch about the language,...or NOT. I'd rather NOT. "Soft and fuzzy" language can be used against us,...it minimizes the condition, which really upsets me. I don't like it when it's directed towards me or anyone else. On the other hand, we can't get into this mindset that "something is wrong with me",...that can be destructive and be used against you.

Play that hand that was dealt to you. Educate yourself. Don't let other people use the diagnosis against you.

 

[Ronald Zeeman]

Ask Daniel Tammet, if it is a disorder, I read his auto biography while in the hospital he admits he is one of us very high functioning, learned anew language in week, memorized pi to 25 000 digits. When I read his book, I could really relate to him, do not have his ability, but like him I would not give up what I Have for any think, my visual thinking ability in physics without THe use of mathematics, makes me feel sorry for the physicist's, who must do all that heavy duty mathematics to see what I can just see.

 

[Ronald Zeeman]

A Lot of us do not want fixing, no real downside, a few obstacles which personally I overcome years ago, now retired, life been good so far. don't fix what ain't broke.

 

[GypsyMoth]

Wow, thank you, everyone. This has been really informative.

My mom will be coming to visit this month and -- thankfully -- she didn't take my husband's stand but still approached it from the perspective of the psychological model as a disorder requiring behavioral treatment to be overcome. (Which I will in no way be doing--I like who I am.) She is very willing to learn more about it so I thought I would pull up some scientific articles to read (thank you very much, @Neonatal RRT !!!), seeing that she isn't internet savvy and has no way to read them at home.

 

[330]

Its complex. You can learn the story of autism and how diagnose/treatment has evolved in the book Neurotribes.

NeuroTribes - Wikipedia

en.wikipedia.org

Lets just say that functional autists were not autists some years ago. So Autism was equal to very low fuctioning people, and they had no idea how to help th...

...eir parents.

That non functional autism is just a part of functional autism and that functional autism and high capacities are very close neurodivergences is quite new. Very new.

Amazing book

 

[GypsyMoth]

A Lot of us do not want fixing, no real downside, a few obstacles which personally I overcome years ago, now retired, life been good so far. don't fix what ain't broke.

That's how I feel. Personally, I am still quite beside myself to find myself here & am not quite sure yet how I feel about 'being' autistic (wow does it fit) or what to do with it...but I am most appalled that those closest to me would side so easily with the "if that's true, then you must be cured!" crowd without giving me a fair hearing. Clearly, they've gotten this view from somewhere. My mom, who stays informed on medical practices, confessed she hadn't looked into autism since the early 80s when she considered having my little brother tested. (I did not know that.)

I appreciate how my IRL friend has been calling me out on very typical, common aspie behaviors. (Her: "you do realize that what you've just said/done is a very common trait for..." Me: "really? Oh, no, I would have never guessed...") It has given me great perspective and I am gaining a unique view--her view--which I find to be healthy and well-balanced, on whatever in the world I am supposed to be doing with this newfound knowledge. One thing I have learned for sure is that she is neither 'broke' nor disabled by having autism. I won't be, either.

 

[Ronald Zeeman]

I come from a family of 6 siblings 4 of use are High functioning autistic, only the oldest had any real issues. mental health, the rest of us are doing very well. Even financially. so, no down sides. I guess being raised together we did not see ourselves as being that different. We were a strange family, known for being the brightest family the high school had ever seen as a collective rather than a bunch of disabled autistics.

Regression to the mean does not seem to exist in my family just a lot higher mean.

 

[GypsyMoth]

@Ronald Zeeman, my extended family is like that. We're all engineers, inventors, and artists. (Except for me. I haven't figured out what I am yet.) No one is 'diagnosed' autistic but I have been learning that our common family traits most likely place us all on the spectrum. We have several certified OCD's, ADHD, dyslexia, even a possible schizophrenic. Family life has always seemed normal (even our beloved germophobe), but then, we're pretty insular and keep to ourselves. My husband has a lifetime of working with a lot of people from many different backgrounds and says he has never met any other single family that is as creative and intelligent as ours, so I know something about where you're coming from. We've just had little exposure to the idea of autism before. I know without having to ask any of them, that if someone were to say to any one of my relatives that they were in any way disabled, the person making the claim would get an earful. Talented, yes; weird, definitely; disabled? Not in a million years.