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MsLeeLoo
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22 May 2010, 12:06 pm

Is anyone else here more than a little skeptical about all these studies and claims that swim around about the autistic spectrum? I keep seeing things in the news (guess i'm more sensitized to it not in light of my daughter) or hearing things from other parents of AS kids about what causes, what works, what has an effect and how it affects the family at large. Perhaps I'm a devil's advocate, but almost every time I hear something regarding AS, my skeptic's hat suddenly appears on my head, my heels dig in, and I go into hyper analytical mode where I look for holes in the argument/study/claim.

Two recent items that started my latest red flag waving- recent study possibly showing a casein/gluten free diet doesn't seem to work (I have doubts about it myself, but the study was on fourteen kids. fourteen...), and the statistics on divorce and AS kids (I actually agree with the new article that AS isn't some boogyman that causes marriages to fall apart, but the notion that this "factoid" had been making the rounds bugs me even more-- and I'm divorced haha!)

Anyway, seems like there's so much conflicting info out there, that a big part of me just refuses to believe a thing I read half the time.



Villette
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22 May 2010, 12:25 pm

Having kids with AS may not necessarily cause the mrariage to fall apart. The parents have AS genes for impaired relationships and these are inherited by the kids. My parents can't get along and my mum blames me for it. The truth is, my dad doubted their marriage was suitable in the early days before I was conceived. Both were just desperate to get married.



liloleme
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22 May 2010, 1:25 pm

I think sometimes if a person believes in something hard enough it works.....just like when they do drug studies and give people placebos...sometimes the placebos work because people believe that they are going to be helped. I think its the same with some of this otherwise holistic diets for Autism. People put their kids on diets....or even drugs (non holistic) but at the same time they are also having therapy. They insist that its the drugs or diet that work, and without them the therapy would not have. I agree that a lot of people, spectrum or not, have food allergies but just taking away milk and gluten from a kid who does not have an allergy to milk or lactose and taking away gluten from someone who does not have Celiac is just a waste. I think its a good idea to just feed all your kids a diet of fresh food....unprocessed....regardless of Autism. Like taking away milk and lactose I think is really a shame because yogurt is one of the healthiest things you can feed your kids. Anyway, I just think its a shame that people are so confused that there have been people that have posted here saying their child has just been diagnosed with Autism and they need help with the "diet" as if its the norm. Just like people I meet that have Autistic or kids with Asperger's who ask me "what medication do you have your child on?"......."Uh, none".
I believe in the right kind of therapy, good teachers, lots of sensory diet and lots of patience and understanding. I just think too many parents are too stressed out running around looking for a cure. Worried that their kid will never get married or something.....did it ever occur to them that maybe when their child grows up they wont want to get married? People need to chill out, whats important is that they are happy. I dont see how kids can be happy when their parents are always stressed out and spending all their money looking for a "fix".
Just my perspective....or as Temple Grandin would say "The way I see it".



Kiley
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22 May 2010, 2:16 pm

I find studies interesting but know enough not to take them overly seriously. I don't think they necessarily imply that AS or HFA, or whatever is bad thing either but simply help us to understand how people are and can lead to ideas about how to live better etc. Studies can make great headlines but it's unwise to assume that any particular study is valid. A study of fourteen kids is really pretty useless.



angelbear
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22 May 2010, 2:21 pm

I agree, we have not really tried the gluten free diet. I just kept seeing such improvements in my son after he started school, that I decided to see how that went before I started trying too many things. There is so much out there that you have to be careful. I agree with Lilolme, how do you know what is causing the improvement if you are doing so many things. Sometimes I do get frustrated with my husband because I feel like he doesn't want to spend money on things for my son, but in some ways, it is probably a blessing. I bet some families are torn apart because they go into financial ruin over the money they have spent to "fix" their child. I do worry about my son's future, not really about whether he will get married because not everyone gets married. I am just more concerned that since he is an only child, who will help him when we are gone? But, you know what? I have had to let that go and just place it in the hands of the good Lord. I decided that it is not worth it to spend the next 20 yrs worrying about how my son's life is going to turn out. I am just going to work with him as best I can, loving him, accepting him, and trying to teach him as much as I can about the world and how to get along. I try to take what I read in the media with a grain of salt. I rely more on WP to give me the direction that I need!



Caitlin
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22 May 2010, 4:30 pm

I have a theory about all these studies and why some show X while others appear to show the exact opposite. It's connected to another theory about whether a single 'autism' really even exists.

I believe the catch-all spectrum of "autism" is actually a continuum of different conditions that mimic each other's symptoms to varying degrees. Some kids have autism because they had a catastrophic birth event, placenta previa during pregnancy, because of maternal age, genetics (inherited), vaccine injury (while I don't support the anti-vaccine movement, I do believe some parents have seen vaccines do this to their children - I just don't think it is an overall cause for autism - but I think the symptoms of some vaccine injuries result in autistic-like symptoms). Because there are different 'types' of autism, and because there are all of these potential causes, I don't think it will be considered a single condition in the future. I believe eventually, all these different conditions will be sorted out from each other, one by one, with more research.

I also think until that happens, it will be nearly impossible to do accurate studies on autism, because your results will always be skewed by which (as yet unidentified) type and cause of autism you happen to have in your sample.

That's my theory and I'm sticking to it :)


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liloleme
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22 May 2010, 7:17 pm

You should read Temple Grandin's theories. She also points out that there are some major differences in typical autism (the kind you have since birth) and regressive autism (develop typically up to a certain point and then begin to regress). The parents of the children with regressive autism are the ones that believe that vaccines cause autism because they see their child progressing normally and then there is a change and considering kids get their shots during this developmental stage its only natural that they would want to point a finger. The fact remains that this has been disproved, still I understand the suspicion. Also its usually the children with regressive autism who remain non verbal and more affected than the children who are typical autism.
I sometimes wonder if there are not some environmental or viral/bacterial factors that cause the regressive form of autism.....there is certainly and obviously a difference between the two.



Caitlin
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22 May 2010, 8:23 pm

Thanks liloleme, she is definitely on my reading list which is, unfortunately, getting longer by the day!

I know they have difinitively proven there is no evidence that vaccine's cause autism, but I don't believe they have disproven it - to me, in order to prove that vaccines do not cause autism in any child, they would need to prove what DID cause autism in that child.


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angelbear
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22 May 2010, 9:23 pm

Lilome and Caitlin---have your children been vaccinated, and do you feel there was any link in your children's cases? I am just asking because when my son was born, I had read everything out there and decided it was safe to go ahead and vaccinate. My son started doing some head shaking at 4 mos.old after a round of vaccinations, and I decided to hold off on vaccinating more. I have slowly been getting him up to date, but I did not want to bombard him. He is almost 5 now, and the only 2 vaccinations he has left are the chickenpox and MMR. I am going to go ahead with it, but was just curious as to what your experiences were. I know a lot of posters on WP feel very strongly that there is no link between autism and vaccinations. I personally think it is mostly genetic, but some children who are more predisposed to autism can't handle the large amounts of vaccines that they give at one time.

In my son's case, I can't blame the MMR, because he has not had it, but I have been concerned that it would cause him to regress.



Caitlin
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22 May 2010, 10:05 pm

With my 6 year old aspie, we followed the regular vaccine schedule. I remember vaguely noticing some new behaviours - almost like sensitivities - immediately after (same day) as one of his vaccines, not sure which one. At the time, as a brand new mom who didn't have any involvement in the parenting/children world (I'm a gov't policy analyst) the word Autism was barely even in my lexicon, so I didn't think anything of it. In my case, I have no reason to believe the vaccines did, or did not, trigger autism in my son. I do know that my husband took and passed the test for an Aspergers diagnosis, because we suddenly recognized so many of my son's quirks in him. I am also certain that several other close relatives on his side have it (undiagnosed), so I believe it's hereditary. I'm just not convinced that it's impossible for vaccines to exaccerbate the situation in some children. My skepticism comes mainly from my complete mistrust of anything related to pharmaceutical giants.

For my younger son (1), we didn't have an ASD diagnosis for his older brother - or any reason to believe we would get one - when he got his first shots. After his 6 month shot - the same day - he began rocking. Could totally be coincidence. He doesn't do that anymore, but he does flap his arms when excited. After Simon's diagnosis, I spoke to my baby's pediatrician about vaccines and explained to her that while I do not believe vaccines cause autism, I do feel an inherent need to be better safe than sorry, and take a cautious approach. In addition, my baby is allergic to dairy, soy, and wheat so he is clearly showing signs of many sensitivities, so she agreed to stagger his vaccine schedule - no combo vaccines, and at least a month or two between each shot.

For me, it came down to 'worst case scenario'. The worst case scenario if I vaccinate my baby, is that it will cause autism (again, not saying I believe it does, just that I don't think we can say definitively that it doesn't). But the worst case scenario if I DON'T vaccinate is that he contracts a fatal communicative disease. I couldn't live with myself if that happened. And for us, Autism is not a big bad wolf. It's part of who our son is. Whether triggered by a vaccine or not, as long as I can still hold him in my arms, we'll be ok.


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22 May 2010, 10:13 pm

liloleme wrote:
I sometimes wonder if there are not some environmental or viral/bacterial factors that cause the regressive form of autism.....there is certainly and obviously a difference between the two.


I do wonder if it is environmental. Not necessarily chemical or anything like that, but sensory. We bombard our kids with sensory stimulation in this effort to make them smarter, and sensory over-stimulation is a huge part of the modern world. I have seen, literally, my son teach himself to turn off a feeling because it was too strong for him. He makes a choice to tune it out, or no longer experience it. What if this is happening in a toddler too young to later remember that choice?

I don't know how anyone tests for that, but I'm not the first person to mention it, or consider it. AS can have an unusually strong ability to embed conscious choices into the subconscious, and it is something my son has talked about often, with no idea how stunning the concept is to me. To him, that is just something people can do. And I do believe I've seen the effects of it over the years. My guess is that the environmental factor doesn't turn someone who was never on the spectrum into someone with AS, but it could send what genetically is a high functioning child into so-called low functioning behaviors.

As for the test on CFGF, those here who have researched it extensively, and even those who benefit from it, would probably agree that there is no connection to the diet and improving the symptoms of autism. They have stated here that there is no evidence that those on the spectrum suffer from food allergies or issues any more than the NT population. However, it can be that functioning with the co-morbid without other treatment is more difficult for someone on the spectrum, so if someone on the spectrum is one of the huge percentage of the population believed to actually have a food sensitivity, then figuring it out and fixing it will be more critical.

Both of my children - one AS and one NT - were vaccinated on schedule with no apparent changes to behavior. Study after study has shown that there is no connection; it is a matter of coincidental timing, that certain symptoms tend to appear around the same time certain vaccines are scheduled. Yes, I believe those studies; they are fully consistent with everything else we know about autism, like the accelerated brain growth at certain young stages. There may be a few cases where autistic like symptoms are created in a child who, because of an underlying mitochondrial disorder, never should have been given vaccinations, but that would be extremely rare.


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liloleme
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22 May 2010, 10:50 pm

All my kids (5 of them) were vaccinated according to the schedule and they had no problems...not even fevers. I am allergic to Tetanus and have a very nasty reaction and have had since I was a child....after the last one in my twenties they told me never to have another one. However I do know someone who did not vaccinate their child and she has Autism so thats pretty proof positive for me. I think they need to do a real study on vaccinated and unvaccinated children and see if the incidence of Autism is the same....I have seen one study but it was one sided as the people who did the supposed study was a "cure through chelation therapy and make lots of money off parents of autistic children".
I dont buy the vaccine theory but like I said....I understand why some parents would suspect it.
My kids were Autistic from birth BTW....not regressive.



angelbear
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23 May 2010, 10:42 am

Thanks Caitlin and Lilolme!



psychohist
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23 May 2010, 11:30 am

Caitlin wrote:
I believe the catch-all spectrum of "autism" is actually a continuum of different conditions that mimic each other's symptoms to varying degrees. Some kids have autism because they had a catastrophic birth event, placenta previa during pregnancy, because of maternal age, genetics (inherited), vaccine injury (while I don't support the anti-vaccine movement, I do believe some parents have seen vaccines do this to their children - I just don't think it is an overall cause for autism - but I think the symptoms of some vaccine injuries result in autistic-like symptoms). Because there are different 'types' of autism, and because there are all of these potential causes, I don't think it will be considered a single condition in the future. I believe eventually, all these different conditions will be sorted out from each other, one by one, with more research.

I tend to agree with this, even within the limited subset of Asperger's. It's like being deaf or having a genius IQ - there are lots of different ways it can happen, even though the result is similar.

Eye contact, for example, could fail to be learned because of a genetic predisposition not to recognize faces, or because of nearsightedness at the relevant age, or because of parents who never make eye contact with their children. Those would be completely disparate causes for the same effect.