regresive autism?

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^there shoud be 'HF' in front of 'autistic rights activist' as its clear have got a biased view of those of us on the low functioning spectrum and are not interested in our rights or the acceptance of us to live as we want.

Sorry about that

Hi KingdomOfRats (K-O-R)> I've read this at least a couple of other times from you and its puzzled me, as I have no idea of what you mean by this. I do understand that many people think lower functioning autistics have less underst6anding then they actually do, and that must be frustrating, to say the least. The part I have difficulty understanding is how people can have the full power to live their lives as they want if other people are taking care of them. I am an older person and one of my biggest fears is having one of my children take care of me because as much as I love them and enjoy their company at times and talking to them on the phone everyday, to me their worlds are kind of flat, and they do not value what is important to me, and when/if I do go to live with one of them, I am pretty sure my self-expression will be greatly limited. They are already trying to tell me not to have my art studio which is above my apartment as it is an expense I can barely pay for, and when they say this is chills my blood as very noisy people used to live above me before I rented that and it practically drove me crazy. I was like a trapped wild animal living underneath. Now I have quiet and it is like drinking from the well of life for me, plus I plan to have discussion groups up there and try to sell my art, also, as I have no possibility to ever retire, at least the way things look now, but I am literally working all the time to pay for it and I am too old to be working this much.

Anyway, both of my children have very unusual brains and one of them is imo definitely on the spectrum. but they have no idea who I am or how my brain is, the depth, breadth and nuance of who I am, even though I am their mother. I think this is just how it goes: people tend generally not not really understand each other and to project their own understanding of themselves, which could be limited, on other people.

Again, the part I do not understand is what you mean by living your life as you want, and also I do not see how acceptance of how you are living your life really matters unless people are in some way taking the possibility of living your life the way you want away from you. Then of course it would matter, as everyone likes to do what they want and not be thwarted.

Sometimes it is hard to sort this kind of thing out. I get extremely upset when my son-in-law says I do not need my art studio, especially because he is trying to impose his own will, values and understanding upon me when he really knows nothing at all about me. It gets even more complex when I need to borrow money from them, such as when it rains a lot unexpectedly and then I cannot work, as if I did not have this art studio then presumably I would not need to borrow the money....:-) The sheer or I should say solid fact of the matter is I really do not care if my son-in-law sees me as a person or not, but when my personal well being depends upon him seeing me as a person, then the entire perspective changes, and it does matter a lot, but I have little control in this area as he is not going to change the way he sees things including me,.

TheRedPedant93

Right. It is a common error to make a causal attribution according to one thing occurring at the same time as another, though there could in some instances be a correlation. I think we all would agree that stress, either a particular environmental substance or a spectrum of substances and shocks could initiate in some instances some kind of regression in some kinds of very young developing children. I think that basically everyone would on some level agree with this.The problem it is difficult to sort this kind of thing out and sometimes just doing something, almost anything becomes part of the sorting process and even can help, which is fascinating in itself.



I definitely get this, but you are trying to fit everything into a spectrum (or maybe he is would be more accurate). I did not watch the last part of the video yet, but I did see another video on nutrition either made by him or some in that same group and have some questions about it. If I can find it I am intending to look at that in detail in the future. I will say once I gave my child who is on the spectrum some blue green algae pills to take and her disposition changed radically practically over night. It was very observable, a huge difference, but then, unfortunately, she refused to take them.

Re your last sentence above, if you care to extrapolate, I would love to hear why. I will have to watch the last part of the tape, but the other tape I saw was problematic for me in some ways.



I do not recall who he was in the video, but the first person hwo appears in the section I noted, I think start at around 39 minutes, as I recall, gave me a creepy feeling for some reason. So in light of what you wrote above, why would they include such as person as this Mark Geier in their tape? That does not seem smart, especially since he is doing the same thing they say other people are doing--omitting information and not looking at the whole picture?


Thanks for posting this link. There apparently has been a very large spike in the number of cases in the last twenty or so years which he equates to an epidemic, and then he says there is no such thing as a genetic epidemic. Would you agree? Yes, it was, as you put it, mendacious of him to suggest that there were no cases of autism before 1930:-) but personally I would not focus on that detail. It is a complex situation. When making a very short presentation like that it is hard for fit all kinds of stuff in. His main message was, I think, is that there is a grave situation and to start looking more at environmental factors and not relying on these superficial incomplete studies. The problem is that it is hard to study and there are, as you suggest, many different combinations of factors.

The normal intellectual functioning part irks me personally. There's no such thing; you can't really measure it sometimes. Also, receptive linguistic comprehension depends on sensory processing ability, so it's discriminatory to those for whom the information simply takes longer to get into the brain or there is less of it getting in.

This is the result of an assumption which is part of our culture, and which can be very hurtful: "If you need someone to do something for you, then that means you do not get to make your own choices."

But people do things for each other all the time. A busy couple hires a maid to clean their house. A man hires a barber to cut his hair. You go to a restaurant, where they cook for you. Someone else makes your clothes, builds your house, and repairs your car. These things are not considered to be signs that you are "less independent". But why? Because, when someone does these things for you, it's you who decides what you want, and makes the decisions about what services you are going to receive. They are working for you, and so you retain your independence even though other people are doing things for you.

Services for disabled people should be like this, but because of the way our world sees disabled people, they are often not. Instead of being a customer hiring someone to do something useful, the disabled person becomes a beggar accepting charity or an infant being cared for, with the people who offer those services becoming authority figures--even when the disabled person wants to, and is perfectly capable of, making those decisions for themselves.

We need a new model for services that's more like hiring a barber than like becoming an infant. We need to have the last word on what we want and don't want. If someone offers substandard service, we need to be able to correct it just like you might send your meal back if you found the restaurant had burnt it.

Can someone have full power to live their lives if someone is taking care of them? Yes. They should have that power by default. If they do not, it is because someone has decided to take it away.

Callista, this message you quoted a part of was really to KingdownOfRats, and I have no problem with you responding, but K-O-R. I am still waiting to hear your response, as I really have no idea what you are talking about and it has always puzzled me, so I am needing to understand, and I know you are able to be very articulate as I have read many of your messages. I am putting the questioning part of my original message below in bold so it will stand out.

To Callista, though the good motive to help disabled people is apparent, what you write seems to me to be not really well thought out, People get money by earning it, unless they are very lucky. If they do not earn it and just get it from other people because they are disabled- (and that they get this money is fine with me), then they have less money, so less choices, though they still should have some choice, imo, and maybe or even probably more choices than they currently do, but if I live with my daughter I will not get a choice of not hearing my daughter play loud rock music two or so hours a day and practice her singing. I do not even like rock music so much, even if it is quiet, as I am a jazz musician.

I have more to say in response to your message, but I think we should wait a bit to see if Kors responds to this.

I don't know if autism is caused by vaccines; I'm sure they'll figure it out some day. Won't really effect me in any way. Personally, I think it's always been around.

But:

I have to disagree that it is a victory to regain these skills; or at least to ask what skills are meant. I think it is more of a victory to manage with the skills you have and the tools available than try to do something that is unnatural.

It IS a victory to go against the grain of what one thinks/feels is oneself and/or what others say is oneself and to learn something new that all odds seem to be against oneself being able to learn. That is called self development. Re natural, people do not even know what there natural self is, so "natural" is kind of a moot point.

For example, certain facets of the story of Carly Fleishman, a person who regressed into autism at age two, are a big hype. People are saying there was this developed person inside of her all the time who could understand these things, and suddenly she spoke by use of a keyboard or whatever, yet her parents were educated people who worked with her very hardcore intensively for many years, and I think other people worked with her, too.. There was a potential to understand, but was it her natural self? She regressed at age two, so maybe it is her natural self to be able to speak by making sounds. The point is not that it is or is not her natural self, but no one really knows what is natural, and many if not even most people do not even know this about themselves.

If you are saying self-acceptance is important, then I agree, and if you are saying people should have small goals and go step by step and work with what they have, then I also agree, but, for example, people have meltdowns for many reasons, not just because they are autistic. Imo it is too handy to say that it is always because a person is autistic. To encourage someone to think that way can be unwholesome and a form of enabling rather than helping such a person to be able. Sometimes a person may have not developed the skill to handle being thwarted and does not want to develop that skill, so he uses the excuse that it is natural to have meltdowns because he is autistic. It may be partly because he is autistic, but I would not encourage people to try to ride that horse all the way home.

I totally disagree with you here. It is much more important to go with what one thinks or feels. What other people say is irrelevant.


So I googled Carley Fleishman because I had not heard of her and this is what I watched. Having seen this I realize I will have to watch a few more of them:

[youtube]http://www.youtube.com/watch?v=KmDGvquzn2k[/youtube]

At the end he asks her what he could have done differently. Well I've got a couple of suggestions: First - don't take her to the crowded cafe. That many people is too many. Give her the damn coffee. It has anti-stress effects on autistics. And . . . don't make her sister take her out when she clearly doesn't want to be with her. Everything is an unnatural construct of her father's. And his camera on her at the end - awful.



Right then.


Meltdowns are definitely something that needs to be learned how to be handled. Destructive outbursts aren't good for anybody. Something I've fought with most of my life. Medication helps. And trying to keep a stress free environment (which is tricky sometimes.) I can't even imagine dealing with a child having a meltdown. My mother has horror stories to tell about me. But I just asked her and she says I have made progress in handling these explosive feelings as I've aged. So yeah...

But the Fleishman video, I find disturbing.

Ann wrote:

Did not have time to reread the rest of your message yet, but yeah, this makes sense. I have to rephrase that and better explain what I was trying to say.

This exactly. I always knew my daughter was different. From about 3 months on, I knew. I had been looking for it because I suspected it was in the family, I was pretty positive I had aspergers, and to top it off, i was pretty certain I went and married another aspie. Her childhood up till diagnosis at age 4 was a big long string of LOVE plus:

Me:"Hey doc, she won't look at me ever. Shouldn't a 6 month old look at me?"
Doc: "NAH. OTher stuff is probably way more interesting! Don't worry!"

Me: "Hey doc. She won't roll over! She's like 7 months old and is completely immobile and shows zero interest in anything ever! She won't even eat food!"
Doc: "Nah! She's just lazy!"

Me: "hey doc, shes 15 months and shes not walking yet should I..."
Doc: "Nope. She's big. Give her some extra time."

Me: "Hey doc! She's not talking and she's almost 2! Not a peep!"
Doc: "Oh well that might be worrysome! Come back in two weeks!"
2 weeks later
Me: "Hey doc, she literally started speaking in full sentances over night with perfect grammar complete with 3 syllable words, is that weird?"
Kid: "Mommy. I can heeeeaaaaaarrrr you. Alabama Alaska Arizona Arkansas California (etc...)"
Doc: "WMG! Your kid is a genius! Congratulations!"

Me: "HEY DOC my 4 year old eats quarters, licks windows, memorizes TV commercials, can add subract multiply, but can't use a fork or tell me what she had for lunch. She also freaks out when she gets water in her face and has anxiety attacks in public bathrooms IS THIS A LITTLE ODD TO YOU?"
Doc: "No. kids are weird. She seems totally fine to me."

Me: "HEY DOC. She had a four hour long meltdown over getting rain in her face and smeared feces all over the bathroom. I took her to a specialist. They say she has autism."
Doc: "REgressive autism at this age is very rare."

Me: "Hey everybody guess what she's autistic."
Everyone:"OMG what happened!! We TOLD you not to vaccinate!! !"
Me: "Uh. she was like this before her vaccinations."
Everyone: "No! She was FINE, now look at her."
Me: "She's the same. It's just gotten more obvious as shes gotten older. As she's gotten older I think her ability to cope has been exceeded... there are a lot more demands on a 4/5 year old than on a 2 year old."
Everyone: "No! Omg! Shes so broken now!! ! What did you DO TO HER?!"
Me: "SHES NOT BROKEN $#@$ YOU ALL!! !"


This is literally it. My husband and I saw it all along. The ASD was always there because we sort of knew the chance was there. So we paid attention. OTher people around us? Utter denial. Complete and total. Then the first time they see a meltdown they are quick to tell us how we should discipline that out of her. Or tell us how rude she is when she won't or doesn't talk to them. The thing is she NEVER talked TO them. Ever. She didn't STOP doing it, she just never started. She talks about a lot of stuff. But an actual two way conversation is very rare and seems to take a lot of effort on her part. Or they get upset that she eats with her fingers. Etc... my daughters grandmother literally thought she lost the ability to use a fork. I told her "she NEVER used a fork. But since she's 4.5, the expectation wasn't as high previously. Now that you expect her to use a fork and she doesn't, it's odd. But it wasn't odd to you before because she was younger so you never noticed that she always ate with her hands."

Look at it like this. If a kid doesn't eat with a spoon at 18 months thats pretty normal. At 2 years it's still acceptable. By 3 it's definately a little slow, but different strokes for different folks right? But if a kid hasn't mastered a spoon by age 4 and they dig intot heir ice cream with their hands and spread ice cream fall out every where, and never really seem to notice anything is amiss, that's noticable right? It was like that with every thing.

wow! That was a very interesting story! Thanks for sharing. Now I understand better what Callista had said.

Both of my kids regressed. My daughter had some quirks but starting talking normally until about 18 months old. She stopped talking real words and spoke gibberish. Eye contact decreased and she stimmed a lot. My son was fine until about the same age and stopped talking. He just screamed and sometimes pointed. He became very rigid and aggressive. I immediately had him assessed because my daughter was just diagnosed.

Note I didn't say that it was impossible--just unusual

CDD is probably around 1% of autism, but considering almost everybody here has autism or has a family member with autism, and there are thousands of people here, I'd expect to see a measurable number of cases of regressive autism on WP.

Your daughter's is the more common type of skill loss--the child is unusual until developmental demands increase, and at that point loses skills because it's all getting to be too much to maintain at once. Typical development before regression, like your son's, is extremely rare, and the older the regression happens, the rarer.

But you probably know all that already, they're your kids after all! I didn't mean to imply that they don't exist; just that cases like that are less common than the ones where parents can look back and see that the child's development was atypical pretty much all along.

https://sfari.org/news-and-opinion/news ... cases#ref1