What is autism? How the term became too broad to have meanin
Yes, as children and young adults we were conditioned to not understand, accept, or respect our own authenticity. well.
Can you @skibum, or anyone else , explain what is meant by that ? Are you saying you were forced to be as society demanded/expected you to be ?
Personally I'm not aware of doing that , though I won't dismiss the possibility it could have happened at a subconscious level .
I think it refers to a few things, at least in my experience (don't mean to speak for skibum):
1) defining autism solely as a disability or negative thing, on top of having the definitions and language of autism come from people who don't experience it directly. I can't imagine NTs would be very flattered if their whole lives were defined by ND individuals--and at the risk of sounding empathetic, they rarely seem to consider this.
2) having an NT interpretation of your words, voice, mannerisms, and body language rammed down your throat, and not being allowed to counter this with what you actually think and feel. They misread us just as we misread them. It's two styles of communicating, and a single way of expressing can mean very different things to an NT person versus an ND person. For example, honesty and getting to the point for us are efficient and useful, but rude and blunt to NTs. Which brings me to:
3) Being told you are rude or too honest or whatever when you assert yourself, then criticized for being too timid if you stay quiet, unsure of what is "right" to say. Then you will probably be "taught" to assert yourself the NT way. You're kind of expected to read the minds of everyone around you.
4) Being dismissed for any complaints related to sensory issues (and related pains), because the NT person you're complaining to doesn't experience them. I realize this stuff can be hard for NT people to understand, but they still know that just because someone doesn't experience something it doesn't mean that thing is not real. If I see a dog nervous about a coming storm which I can't sense, I don't think the dog is stupid. I realize its experience is different than mine.
Many people on the spectrum are criticized for not self-advocating or asking for help, but I don't think NTs realize that people on the spectrum have probably had their sensory issues ignored or misunderstood since they were born. At a certain point you just realize most people don't understand and really don't care. You, in a sense, don't exist. The facade you put on for them is what is real.
Okay reading these threads I understand a comment from a NT is maybe not wanted. But I actually worked in neurodevelopmental research and am currently writing a paper on ASD in terms of brain chemistry. I posted on another thread, and I think the message should be repeated. Especially from an NT, your truth is your truth. I guess I want to obliterate the walls between clinical/research/public and make the process of research more transparent and how DSM is changed, incrementally. The DSM and clinicians are nowhere near correct in definitions, but what I've heard from my MD/PhD counterparts is that for insurance purposes, and government aid for the individual, a clinical definition must be present in order to measure the need of a family. So however "wrong" the definition is, we do need a definition to be able to help those who need help.
What great conversations in these threads, and very strong opinions! It's to be expected that there's such unrest about the definitions in the DSM and the categories and generalization of the autism diagnosis. My research (that is being written now, and hopefully will be published soon) focuses on a critical period of development of what we on the science side of things call "autistic phenotypes"which is a fancy way of saying common behavioral deviations that cause undue stress on the individual and we see universally in autism, and are used to diagnose. For autism those phenotypes are
1)Repetitive and restrictive behavior (think pacing or rocking, in mice we see it as over-grooming). Also included in here is focused attention on specific subjects
2)Social communication difficulties (inability to read cues, or interact smoothly* this is the one my personal research focused on, so I understand the neuro part of it a bit better)
I'm sure everyone on here is very aware that we do not have one genetic cause of autism. Autism can be caused by thousands of genetic mutations, but also environmental factors and even parental neglect in severe cases such as the Romanian orphanages where children had social deprivation. The environmental factors spurred me to look for a critical period of development to help determine during which ages a child is solidifying the circuits. What we don't know is why all of these genetic mutations end up having similar results (phenotypes). This is why autism is very difficult to treat. I'd like to also point out that there's a lot of discussion that autism isn't actually and shouldn't be considered a disorder. It's also a theory that it's a evolutionary adaption, that has persisted for some unknown reason. I'm not here to make concrete statements, just all things to think about, and this is why I love research and science.
When it becomes diagnostically a disorder is when it effects the "daily activities" of an individual and makes every day activities more difficult. At that point we consider it a disorder (as with any mental illness or behavioral coping mechanism).
What we do know, is that people that are diagnosed with autism show neurological similarities when processing. I'll try to be very clinical, because I know that this is personal to a lot of people. When someone is processing social information, it goes through a pathway in the brain, and is first filtered through the cerebellum (where my focus of research was on, think "Air Traffic Control" it mediates input signals and amplifies or subdues signals to give the brain the proper response to stimuli) then it's filtered through the hippocampus (memory- is this situation like other situations I've encountered? Also involved with emotions and limbic system), and ultimately through the prefrontal cortex (the filter of the brain, "should I say this?"). When we drink alcohol, we shut down the connection between the rest of the brain and the prefrontal cortex which leads us to say things we wouldn't normally have said out loud, and to make judgement calls that maybe aren't very good. ADHD is a type of autism (this is another huge debate with researchers, should it be?) that actually is mostly about the prefrontal cortex connection. Because people that have ADHD have less of a connection (or less signalling, we don't know which yet), they tend to not be able to concentrate on one thing, because impulse control and judgement are harder.
Okay back to ASD, people with ASD regardless of the genetic mutation, or the environmental influence- show very similar neurological results. Basically the signalling in the cerebellum is getting incorrectly amplified or depressed. Now I'm not saying HOW much it's being amplified or depressed, that is 100% unique to the individual. Some people it's only slightly different, some people it's wildly different (ergo the variation in symptoms).
Here's an example. I'm someone with ASD, and I'm meeting someone new. That person says "hi, nice to meet you-I like your shirt". Processing that thought, through my cerebellum, the air traffic control tells my hippocampus "THIS IS A THREAT" my limbic system then goes "A THREAT! PROBABLY BECAUSE YOUR SHIRT IS UGLY" and it gets processed through your prefrontal which has less of a signal so you know you should say "Thank you, nice to meet you too" - but instead you end up saying something else, and end up feeling awkward and unable to interact properly. Now this is brash example- but you can see how the mediation of signaling can be much different in autism. Some non-verbal ASD people may have a huge signal depression, some kids may have a huge VOLUME UP on their signalling. It also varies where the signalling changes occur. Some happen (like ADHD) in connection to the prefrontal cortex. Some happen much earlier (making results more extreme).
Anyways, research doesn't have one pathway effected, and as of yet we can't uniformly turn up or down signalling and not effect the rest of the brain. But research is trying. I think, especially coming from a NT (yet, all ASD researchers believe everyone is basically on this spectrum), that whatever identity feels right for you, is right. Yes, you are clinically diagnosed with something, and that's important for insurance and for getting help, and being able to communicate broadly with doctors and friends and family- but know that the DSM is even behind modern research (they only update it so often). How you feel, and what feels like your truth is so much more important.
Thank you for including me in this discussion, and let me know if how I explained it is not your truth-I learn through modification, and this is how I know how to explain it as of now- I try to connect what I know doing neurodevelopemental research and clinical experience with patients all over the spectrum. I'm also dating someone with Asperger's (how I was introduced to this site). But again, I am an NT and in no way want to explain your truth incorrectly, I just want to show what research has found up-to-date and if that helps some find their own truth I think that would be wonderful.
Best,
C
C, OMG, ROTFLOL - that is so me!! !! ! Even in my late 40s. My parents always told me I was just so dramatic and negative, and if I'd simply be more positive... --- I tried what they said, I really did, I was so "well behaved". It didn't change anything. I have the VOLUME UP (interestingly my ASD-like BFF has signal depression). Even so, after studying 100,000 of pages of psychology, communication and self-help books (aside my engineering degree), I get by very well considering, EXCEPT I have all this "baggage" from repressing myself all those years... and am still trying to establish what to say when I am in overload (rather than staring in silence, or more recently -as I loosen up on my repression- widening my eyes and fleeing). There has to be a middle ground for me.
ASPartOfMe
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What This Controversial Guardian Piece Got Wrong About Autism by Maxine Shire for The Mighty
As an autistic advocate, autism consultant, writer and presenter, I am no stranger to hearing statements reminding me that autism understanding and acceptance are still a long way off. The uninformed masses often characterize those with the “Asperger’s-type” presentation of autism as lazy, arrogant, savant, weird and lacking empathy. On the other hand, autistics that cannot communicate with spoken language or control their bodies are described as dangerous, destructive, uneducable burdens with no redeeming features that live miserable lives.
Long story short, society’s attitude can be summarized like this: if you are considered “low functioning,” we couldn’t care less about your strengths. If you are considered “high functioning,” we couldn’t care less about your needs. This is what’s wrong with functioning labels!
I hear this upsetting stuff a lot from, let’s say, a less intuitive parent, an educator who thinks they know it all, or from professionals who have only an academic understanding of the breadth and scope of the autism spectrum. But I am not used to such destructive and irrational nonsense being perpetuated by other autistics. This is why I feel compelled to respond to the opinion piece published by autistic Tom Clements in The Guardian August 26, 2019, “What Is Autism? How The Term Became Too Broad to Have Meaning Anymore.”
I’m not going to tackle everything I find problematic about the piece in depth. For example, I am not going to address his snobbery in describing his own place on the spectrum as “upper end autism,” nor juxtapose it against his stark description of the other end of the spectrum as “a profoundly life-limiting disorder that consumes every waking hour of a family’s life…unpredictable bouts of aggression resulting in torn upholstery, cracked skulls and savage bites.” I will say he seems eager to reclaim the Asperger’s label and distance himself from the word autism.
What I will address are two points. One, correlation is not causation. Just because there are more autistic people being diagnosed these days does not mean verbal autistics are the cause of society ignoring the needs of non-speaking autistics with behavioral difficulties and/or intellectual disabilities.
Get real. Society has never given non-speaking, “severely autistic” people the respect and consideration they should have as human beings. We used to lock them away in institutions where they were often abused and neglected. Today, families are expected to provide care in the family home, but are given few resources. Schools do not have the ability to tap into the potential of these individuals, and so potential strengths and abilities often do not have a chance to develop. From what I’ve seen, very few are ever taught how to use communication tools and so they are deprived of the most basic human desire to share thoughts, feelings and needs. Don’t blame verbal autistic people for this terrible situation — and certainly don’t blame those of us who are doing our part to include the important contribution of non-speaking people in events staged for and by autistic people to raise understanding and increase acceptance.
To realize more representation for non-speaking autistic people, one just needs to part of the change that they want to see. Work to change the system — but not to deride and ridicule the advocacy actions of those autistic people who can speak and whose support needs may be less visible.
The second and most important thing I must address is the notion that those with high support needs do not have a life of value. Certainly describing these members of our neurotribe with phrases like, “…an autistic person with an IQ lower than 30 who is prone to lashing out and soiling themselves” in an article for public consumption is dehumanizing, and when we use this kind of language, this perpetuates the very conditions that Clements laments. It allows society to continue ignoring the potential and the wishes of this population.
This is the truth: we do not measure intelligence in those who cannot communicate with spoken language. We don’t, and so we just say they lack any cognitive ability — though anyone who works in this field can tell you that many non-speaking people are interested, intelligent and curious.
We often don’t provide non-speaking students with an academic curriculum in school — we “manage them” and teach them how to fold a towel just so. We often do not invest time, money and human resources in teaching them how to be fluent with a communication tool, so they cannot tell us what they need, how they are feeling and what they’d like to do.
It is testament to their own strength of character that nonverbal people like Emma and Adam, nonverbal authors Carly Fleischmann, Naoki Higashida, and Ido Kedar are able to have their inner voices “heard” in a world dominated by those who speak. They also had champions. In their cases, it was often parents who, in spite of the need to provide often high levels of physical care and supervision to their child, still found ways to educate their curious and capable children.
It seems to me that each of these people have pretty full lives. They are contributing to the world. They have people who love them, and their physical support needs in no way detract from that.
_________________
Professionally Identified and joined WP August 26, 2013
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
I think this is worth highlighting.
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Let's not confuse being normal with being mentally healthy.
<not moderating PPR stuff concerning East Europe>
I don't know if they are totally wrong. They do have issues as they don't account to spiky, uneven profiles of autistic cognition but I wouldn't call them downright wrong.
I think it is a more general issue with rights of the disabled, not just autistics. The society tends to either overlook and deny your disability at all ("high functioning" issue) or dump you to a hole of "burden to your family" and ignore your potential and ambitions ("low functioning" issue).
I have experienced both - the former esspecially in childhood, the latter when I was misdiagnosed and drugged into torpor. Both are awful but I find the latter far worse - when all the society expects you to do is not sh*****g your sheets white you want to work on your PhD or even simply have some fun!
_________________
Let's not confuse being normal with being mentally healthy.
<not moderating PPR stuff concerning East Europe>
Thanks for posting here. It's great to be able to talk to someone involved in autism research here.
What do you and most researchers think would be a more correct definition? What is wrong with the current DSM definition, in your view?
1)Repetitive and restrictive behavior (think pacing or rocking, in mice we see it as over-grooming). Also included in here is focused attention on specific subjects
2)Social communication difficulties (inability to read cues, or interact smoothly* this is the one my personal research focused on, so I understand the neuro part of it a bit better)
I'm sure everyone on here is very aware that we do not have one genetic cause of autism. Autism can be caused by thousands of genetic mutations, but also environmental factors and even parental neglect in severe cases such as the Romanian orphanages where children had social deprivation. The environmental factors spurred me to look for a critical period of development to help determine during which ages a child is solidifying the circuits. What we don't know is why all of these genetic mutations end up having similar results (phenotypes).
Lately I've been thinking about what seems to me to be a pretty obvious answer to that question. I'll post about it in a separate thread sometime later, maybe a few days from now.
Why do you consider ADHD to be a type of autism?
It seems to me that ADHD should NOT be considered a subcategory of autism, although I agree that the two are closely related. Both involve attention difficulties, but of different kinds. Also, ADHD by itself (without co-occurring ASD, under the current definition of the latter) results in the opposite of category #1 under what you've described as the autistic phenotype. Whereas autistic people tend to have a narrow focus and have difficulty multi-tasking, ADHD people have difficulty focusing and tend to prefer to multi-task and shift their attention all over the place.
Also, because about 10% of all people have ADHD, whereas only about 2% of people have ASD, making ADHD a subcategory of ASD -- rather than, say, vice versa -- would be a case of the tail wagging the dog, and would drastically explode the population of people diagnosed with ASD. We would then need another, separate label or specifier for what used to be the smaller category of autism/ASD.
So, instead of encompassing ADHD within autism/ASD (or vice versa, for that matter), it would be better to come up with another, broader category that ADHD and autism/ASD could both be part of.
Okay back to ASD, people with ASD regardless of the genetic mutation, or the environmental influence- show very similar neurological results. Basically the signalling in the cerebellum is getting incorrectly amplified or depressed. Now I'm not saying HOW much it's being amplified or depressed, that is 100% unique to the individual. Some people it's only slightly different, some people it's wildly different (ergo the variation in symptoms).
Do some autistic people have signalling amplified in some parts of the cerebellum but depressed in others? If so, how common is that? Also, among people whose signalling is either amplified only or depressed only, do they differ greatly in which parts of the cerebellum are affected to relative degrees widely varying between one part and another part? (I would guess yes -- am I correct?)
Well, yes, of course, that would be rather hard to do.
Do you think it's at all likely that the quest for such a highly targeted brain treatment could possibly succeed at any time within the next couple of decades?
Some other questions about autism research:
1) Has any significant attention been paid to the specific problems of the most severely disabled autistic people, especially those who are unable to learn language-based communication, and how their brains may differ from those of other autistic people, besides perhaps just having more extreme variation in cerebellum signalling?
2) Why is there not a LOT more research than there is now on ways to teach non-speaking autistic people to communicate via reading and writing, typing, sign language, etc.? Many probably ARE capable of this, although some might not be.
3) Has any significant attention been paid to the motor difficulties that often accompany autism -- and which are the cause of the apparent lack of language ability of at least some (though probably not all) nonverbal autistic people?
4) Has there been any significant research into the causes of intellectual disability, for those who are intellectually disabled as well as autistic?
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- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
Last edited by Mona Pereth on 31 Aug 2019, 12:55 pm, edited 1 time in total.
Welcome C (loveandotherdrugs)
I can't quote your post because CAPTCHA won't allow me to.
Thank you for being here and for posting and thank you for the research that you are doing. It is very good and very important and I would like you to continue to post on this site. I am very interested in communicating with you and in knowing what you have researched. Thank you for being here and for showing us such respect.
_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."
Wreck It Ralph
I subscribe to the view that autistic people have brains that are "under-pruned" of connections, therefore a lot of experiences that are not intense for non-autistic people are quite intense for autistic people.
I think we tend to experience sensory information more strongly. I don't view autism as being predominately a social condition like many do, I view that as only a side effect.
I think we tend to experience sensory information more strongly.
Actually, variations in intensity for autistic people can go both ways: either more sensitive than NTs or less sensitive, and often some combination of both (e.g. unusually ticklish but less sensitive to pain).
I too think the social aspects are a consequence of other underlying neurological issues, but not just the sensitivity issue. (After all, there are "Highly Sensitive People" who have sensory processing disorder but are not autistic.)
Usually I think autistic social difficulties are due to some combination of: (1) sensory issues, (2) attention focus issues (especially a greater-than-normal difficulty with multi-tasking and shifting one's attention), and/or (3) lopsided intelligence profile.
For me personally, the attention focus issue is primary, and, I think, the main cause of most of my social difficulties, along with slower-than-average processing speed.
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
It is known that "Nonverbal learning disability" (NVLD), the combination of low nonverbal IQ with average-to-high verbal IQ, overlaps heavily with what used to be called Asperger's syndrome. People with NVLD may have trouble reading nonverbal social cues simply because they are nonverbal.
On the other hand, people with low verbal IQ but average-to-high nonverbal IQ are likely to have difficulties with conversation.
These kinds of difficulties by themselves do not constitute autism, but they are an important part of the picture for many (not all) autistic people.
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
I think we tend to experience sensory information more strongly. I don't view autism as being predominately a social condition like many do, I view that as only a side effect.
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Forever gone
Sorry I ever joined
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