Lets talk autism.

reply to post by Cathcart


The ASD community really? Because i have two children classified as "severe" and you wouldn't know it in day to day just looking at them, whether it's imitation or not, they do a good job in public now as opposed to before where they couldn't be in public, all of that through a LOT of intervention.

I also talk quite often with other parents and children that are in the same classification as the girls, doctors, and also researchers at Yale New Haven, not one of which has ever stated that there is a proven causality between genetics and autism. That does not mean that they aren't researching the possibility and great strides have been made in European studies on the subject, BUT as of this moment there is no concrete evidence that it is a genetic disorder, right now the going and prevailing theory (and I'm not sure I totally agree with it but.. ) is that it is a DNA mutation that is "triggered" by something as yet undetermined.

I love how you also attack me - you talk to people, I DEAL WITH this day in and day out for close to 15 years now, DAY IN DAY OUT every milestone missed, every IEP meeting EVERY SINGLE neuro exam, every single test, every single realization that your children will never leave home.. for you to sit there high and mighty and exclaim that you have 100% proof positive on something that the experts themselves cannot even agree upon is almost laughable if it wasn't so offensive.

As for the kids, love em to death, spend hours trying to play on their levels, and yes they are incredible problem solvers, and incredible artists, and games, forget it, they beat me every time, but it's fun to hear their takes on things, my 10 year old (almost 11) is always pointing little things out that I miss because i'm rushing around so fast, she's incredible. But she doesn't talk in the way that one would consider "normal" she requires assistive tech to help her communicate (in her case it's an iPad mini that she carries with her) and her handwriting looks like that of a 3 year old.. But she is excelling in her academics, and has some friends that are considered "normal" children and can seem to play with them ok. But the intervention early on helped that.

How is that NOT understanding... How is that NOT HELPING the understanding? I have read every single study, listened to people preach about vaccines (something I think is total BS but hey that's just me) wanted to vomit when people claim these children are abominations that need to be drugged or institutionalized (mine take nothing other than one has some asthma meds) I listened hopefully at the new research that they think they have found the trigger, and I ask them what they want, not what I want for them.. How dare you.. how dare you.. You do not know any more than I do what causes it, or how to cure it..

People like you make me so angry, next you're going to tel lme Autism Speaks actually uses it's donations for "research" (people who deal with these kids know otherwise and laugh that organization out the door)

vkey08
The ASD community really?

Yes, people affected by autism spectrum disorders do form social communities. Support groups, networks, and even a rights movement. I'm not sure why you seem to find the concept so ridiculous...

vkey08
Because i have two children classified as "severe" and you wouldn't know it in day to day just looking at them, whether it's imitation or not, they do a good job in public now as opposed to before where they couldn't be in public, all of that through a LOT of intervention.

It can help them adapt to society, that much is true. Helping them cope is one thing, believing that intervention somehow "cures" autism is another. This kind of thinking leads to nasty extremes. I suppose you're aware that shock therapy, among others, is still being used to treat autism?

vkey08
I also talk quite often with other parents and children that are in the same classification as the girls, doctors, and also researchers at Yale New Haven, not one of which has ever stated that there is a proven causality between genetics and autism. That does not mean that they aren't researching the possibility and great strides have been made in European studies on the subject, BUT as of this moment there is no concrete evidence that it is a genetic disorder, right now the going and prevailing theory (and I'm not sure I totally agree with it but.. ) is that it is a DNA mutation that is "triggered" by something as yet undetermined.

Indeed, but research suggests that this mutation is linked to specific genes or a combination thereof, and thus probably heritable. You're right about the trigger being unknown, though. But that wasn't my point to begin with. My point was that it wasn't a disease that can be cured with a pill. The brain of autistic children has physical differences, possibly even from birth, though I'm not sure of that, so correct me if I'm wrong. You seem very well versed in this subject.

vkey08
I love how you also attack me - you talk to people, I DEAL WITH this day in and day out for close to 15 years now, DAY IN DAY OUT every milestone missed, every IEP meeting EVERY SINGLE neuro exam, every single test, every single realization that your children will never leave home..

I have a developmental disorder. I don't "deal" with this, I live this, though it's not as severe in my case, so I have no right to judge you. But still, I've faced a lot of crap growing up, in social interaction and at work. And I deal with a medical industry entirely focused on curing this type of disorder. Because I'm no longer a child, and thus no longer receptive to treatment, this industry considers me a lost cause. We have little visibility, and little effort is made to help comprehension on either side. Apparently, few people care once we grow up. That's where I'm coming from. I didn't mean no disrespect to your situation, though now I realize I hurt you, and I'm afraid I can't do much more than apologize.

vkey08
for you to sit there high and mighty and exclaim that you have 100% proof positive on something that the experts themselves cannot even agree upon is almost laughable if it wasn't so offensive.

I never claimed to have 100% positive proof. I didn't even adress the cause of autism in my original post, just its nature and how people live with it. If I hadn't used the word "genetic" we wouldn't even be having this conversation in the first place.

vkey08
As for the kids, love em to death, spend hours trying to play on their levels, and yes they are incredible problem solvers, and incredible artists, and games, forget it, they beat me every time, but it's fun to hear their takes on things, my 10 year old (almost 11) is always pointing little things out that I miss because i'm rushing around so fast, she's incredible. But she doesn't talk in the way that one would consider "normal" she requires assistive tech to help her communicate (in her case it's an iPad mini that she carries with her) and her handwriting looks like that of a 3 year old.. But she is excelling in her academics, and has some friends that are considered "normal" children and can seem to play with them ok. But the intervention early on helped that.

How is that NOT understanding... How is that NOT HELPING the understanding? I have read every single study, listened to people preach about vaccines (something I think is total BS but hey that's just me) wanted to vomit when people claim these children are abominations that need to be drugged or institutionalized (mine take nothing other than one has some asthma meds) I listened hopefully at the new research that they think they have found the trigger, and I ask them what they want, not what I want for them.. How dare you.. how dare you..

Sorry. I had no idea you would take my words so personal. It was extremely presumptuous of me to make this claim when I didn't even know your background. It might not make much of difference at this point, but I take back everything I said.

vkey08
People like you make me so angry, next you're going to tel lme Autism Speaks actually uses it's donations for "research" (people who deal with these kids know otherwise and laugh that organization out the door)

No. Autism Speaks is a charity organisation of dubious intent. It also has no autistic people among its ranks and in no way represents them. I'm not sure why you brought this up.

reply to post by DrumsRfun
Hi DrusRfun,

I appreciate you reaching out and wanting to find information. Good on you!

kosmicjack
reply to post by DrumsRfun

 

There is reason to think it is both genetic and environmental. In other words a genetic predisposition or fragility may make some people more susceptible to environmental factors such as toxins, vaccines, diet, etc.

Kosmicjack said this very well. This is the current research as far as I know, as well. Kosmicjack mentioned correlation studies, and they seem to bubble up, grabbing a headline and then sinking back into the mass of data never to be heard of again; because of the complexity of ASD, in my opinion, I doubt a correlation study will discover an actual "smoking gun." Researchers like "smoking guns" because they can work backwards from them, towards both prevention and possible treatment.

As was stated above, assuming this theory is correct, a child with autism has a genetic predisposition to be affected by toxins, diet, possibly vaccines - a laundry list of things, really. I see it as a sort of "cascade" issue for some kids (my theory here, based on my research and experience), especially the ones who regress: the genetic predisposition is triggered, perhaps several times, by several different sources until the "straw that breaks the camel's back" hits them, and then, depending on the child and the nature of the trigger(s), leads to a compromise in the body, leading to inflammation in the white matter of the brain (cabling) and, sometimes, issues in the GI tract (which might come BEFORE the inflammation in the white matter of the brain). This is why it can appear to be "ONE THING" like a vaccine, or high levels of industrial lead, etc. But it could be either, both, or something else. These things are only triggers. We are exposed everyday to tons of toxins all around us in a soup that no one really planned for, and certainly no one knows how these weird combinations of things are affecting us. In my opinion, the genetic predisposition has ALWAYS existed, and it is the environment (stuff external to the child that the child comes in contact with) that has changed (this could be ingested, breathed, touched, etc.).

Another issue that I haven't seen anyone discuss yet, is the disruption of normal sensory inputs in the brain, or "sensory integration" disorder. More than just language and social behavior are usually affected. Vision may be highly sensitive and rapidly processed, but auditory is lagging, so there is a disconnect between what is seen and what is heard (it is described as the world being a badly dubbed movie). This leads to the outward behavior of the child putting his or her hands over her hears or sticking their fingers in their ears to dampen the sense that isn't making sense (so to speak). Other kids have to "shut down" their vision so they can concentrate on their auditory input, which is more easily processed for them. There is "hypo" (dulled) and "hyper" (extreme) sensitivity of the senses as well, including the sense of touch. That is why some kids don't want to be touched or they get upset at certain textures. Other kids may have too little input and be a danger to themselves, injuring themselves without realizing the damage because it doesn't hurt for them.

A child like mine has hypersensitivity for auditory, hyposensitivity of touch, extraordinary visual and kinesthetic processing (amazing eye-hand coordination), etc. - each child is unique depending on how they are uniquely wired/challenged. A very important thing to remember is that ALL behavior has a reason for it and ALL behavior is communication - even if outwardly it looks strange. A parent needs to be a good detective, observe their child's unique issues and search out the underlying reason. Even when behavior seems incomprehensible, or the child seems "out of touch" it is good to remember that there is still a child in there, stuck in a body/brain that is not working right. (see my signature, if you like)

Kosmicjack also mentioned the GAPS diet. My son with severe autism must absolutely stay away from several foods; gluten, casein, soy, corn, eggs, excess sugar, etc. If he doesn't, his behaviors (hyperactivity, 'stimming' or repetitive behaviors, insomnia, self-injurious and aggressive) all spike to where life is just insane. I know it doesn't work for everyone, but there is definitely a portion of the autism population that are effected by not only foods, but environmental sensitivities as well. I would recommend finding an open-minded doctor, allergist or nutritionist (or combination of these) to work through an elimination diet, starting with gluten and casein (or one at a time), for at least six weeks, noting carefully any changes. If there is a spike in behaviors during those six weeks, don't give up as this is often a sign it is going to be worth the work! (My son had a horrible time with this but it was worth it! He got his facial expressions back, which had totally gone, and he stopped pushing everyone away except me, and started showing some interest in things other than turning everything into a drum.) Granted, this is anecdotal, but there is research out there, should you want to investigate this. We figured what preliminary studies we saw looked like it could have some positive results, so we went for it, just wanting something we could DO that was in our control, in a situation that seemed utterly out of control. He was recently (after multiple attempts to figure this out) diagnosed with IBS - irritable bowel syndrome, incidentally. So there is definitely an issue in that area - I just wished he'd had that diagnosis when he was 2 1/2 instead of 11!!

Incidentally, my son is non-verbal, and has not yet been trained up to a device (ie a device to help him communicate). He is 12, and that is one of our top priorities.

It is very important to remember that autism is a spectrum disorder, as others have mentioned. Someone on the "high functioning" could very well have an extremely productive life, while those on the severe end will have much greater challenges.

Does your friend have services for her child? If not, you can help her look into what services your state has available for children with autism. From everything I've seen, it is very important to start "early intervention" as soon as you can. Go to the state Medicaid site and check out the qualifications for "disability" there. If the child is school-aged, the school will provide services to the family and a specialized education program. If pre-school aged, there may be resources to get the child into a structured program with people trained to help kids with autism. It can seem overwhelming and there is usually a mountain of paperwork, but again, it is worth it to get the help the child needs.

Anyway - thanks for your post - I hope mine is helpful! If you have questions, please ask, as I am very willing to help!

Movies that may help give you a good picture of things: "Autism, The Musical" "Horseboy" and "A Mother's Courage"

- AB

reply to post by AboveBoard


WOW,you gave me a ton of information so I thank YOU for YOUR post.
My friend does do some sort of therapy with her son but we are Canadian so the medicare thing doesn't come into play here.
I never got into the details of it so am not sure what that entails.

Whatever info I get with this thread I am just going to pass along to her in hopes that she might find some piece of info helpful in some way.

Again,thank you for your post.

reply to post by AboveBoard




A very succinct summary of the complexity that is autism. I wold like to just add

to your post something that helped me in understanding my grandson.

The autobiography by Donna Williams "Nobody Nowhere" she is a 'high functioning'

autistic and has written other stories too, but that one gave my first insight into

getting into my grandsons limited world.


There is another book written by Mark Haddon called "The curious incident of the

dog in the night" It is a fictional story but the author needs to be commended

for how he managed to get into the 'autistic mind'

reply to post by eletheia


Good info, thank you! I think it is very interesting to listen to the voices of people who have different levels on the spectrum.
The "Curious Incident of the Dog In the Night" is one POSSIBLE view of an "autistic mind," but I would truly warn against the assumption that it can relate to ALL "autistic minds."

There is a man (featured for a bit in the "Mother's Courage" movie) named Tito. He has written several poetry/prose books, and I would refer everyone to "The Mind Tree." Incidentally, he has severe autism, but his mother (who is brilliant in her own right) came up with a simple, low-tech technique or 'learning system' to promote communication in non-verbal kids with autism. Tito is non-verbal, but can type extremely well and is learning to use handwriting. He had serious behavior issues (you can also see him described in the book "Strange Son," which is not specifically about Tito, but he is connected to that story), and, honestly, if you were to see him you would not see someone who outwardly appears intelligent. His IQ is in the 180's. Yes. 180s. Genius. And to think there was a time (and still is in parts of the world, including the US) where someone of his intelligence would be carted off to stare at four institutional walls while on heavy meds for the rest of his life.

Temple Grandin has interesting insights on "the mind inside" autism, as I call it, as does Carly Fleischmann, who has learned to communicate through typing and was featured on 20/20 several years ago, has a blog and does youtube videos on what it is like to have autism.

Another off-the-beaten-path researcher with very interesting perspective: Olga Bogdashina - I'm reading her books now. "Autism and the Edges of the Known World: Sensitivities, Language, and Constructed Reality" is a very technical but awesome read.

peace to you,
AB

reply to post by AboveBoard



Autism is such a vast spectrum that I think people can only speak from their own

experience of the autistic person they are involved with. There will always be

someone who can relate to, and gain from anothers experience.


I personally related to the story "The Curious incident of the Dog in the night"

because my grandson (not high functioning) has an incredible memory, and

sense of direction, from the age of 4 years.


When he was young (he's coming up to 28 years now) we had many problems with

noise there were certain noises which drove him 'mad' and in Donna Williams book

she describes sensory over load ... how noises such as rain pattering on a roof

sounded like bullets - and she could hear flushing toilets from two flats away!

she described how some clothing and touching could be 'uncomfortable.' These

things helped us to help him cope. He's grown out of or can cope with much of

that now.


One thing that caused us a lot of amusement was that the food served to him,

no items on his plate were allowed to touch each other, there had to be a gap

separating everything ....lol!! He's almost over that one now

reply to post by DrumsRfun


I had autism and the best thing you can do for it is meditation and yoga. Once i awakened my kundalini it was gone. Its important to stay away from unnatural foods these will make it worse. With autism the way you process your thoughts is alot different. Your thoughts dont stop for every thought a someone gets a person with autism would get 20 thoughts. This can be a curse if living an unhealthy lifestyle but a blessing if used properly.