Author Topic: Autism  (Read 5782 times)

Offline Matt_Fury

  • Jedi General
  • *
  • Posts: 8426
  • I aim to misbehave.
    • View Profile
    • Every Action Figure Parody has a beginning.
Re: Autism
« Reply #15 on: April 8, 2019, 11:10 AM »
JM,

First, welcome back to the forums!  Sorry to hear that the original RS thread was shutdown, it looks like it was started after I left RS, so I was never able to read it.  Hell, your thread was started before I even had children so that's why I've never posted here before.

Thankfully, neither of my children have autism, although my wife and my oldest do have some health issues, one of which causes a lot of inflammation...specifically in my oldest boy's brain, which will occasionally have him not act right.  It makes it difficult for him to focus and it has an effect on his school work.  Luckily, we can mitigate his symptoms with medications, but we can't be with him all though the day.  I don't know where on the spectrum your kid is....but I can sympathize to a degree.

A good friend of my wife's has a child who had serious issues with autism and she was able to mitigate a lot of it with diet of all things.  We're talking very strict non-GMO, all natural no preservative type of foods.  Is that something you've tried?
This is the way.


I have spoken.

Offline Muftak

  • Jedi Padawan
  • *
  • Posts: 897
  • Cardboard Entrepreneur
    • View Profile
Re: Autism
« Reply #16 on: April 8, 2019, 02:44 PM »
I wasn't a parent yet when this thread began--my oldest son will turn 10 this year, my younger son will be 7 in a couple months--so this is an interesting read.

My younger son was diagnosed with autism in 2015, just after turning 3. His is a severe form that has impacted our family's daily life in a major way. His older brother has had so much to deal with, I feel so guilty having to make the choices that we do.

I can echo the sentiments about the vaccination link. I thought it was all tinfoil-hat talk until my son had a bad reaction to a vaccine and quickly after began regressing in his development, losing speech and motor skills, etc. Now I have looked into enough to see the government and Big Pharma have gone out of their way to keep pushing their formulations and ignore--no, actually bury-- the evidence of the harm they are causing.

I also read a comment about inflammation, and also wanted to share that we have noticed a marked decline of his symptoms whenever he has a fever coming on, as if the inflammation is allowing a bypass of the affected areas of his brain, though the autism always rebounds back. Our developmental ped has been tracking this.

Last summer we had some success with a dairy-free, casin-free, reduced gluten diet (think paleo or keto) but the gastroenterologist had us put him back on a mainstream diet to do some testing, and we noted little change after the switch back. They are still trying to figure out what all that means.

Happy to talk about your journey and ours anytime you want, Jedi Master, though I'm afraid I would be getting more from you than you from me.
« Last Edit: April 8, 2019, 03:02 PM by Muftak »

Offline Jedi_Master

  • Youngling
  • *
  • Posts: 58
  • Owwwwrrrgghh Awwrrraahhhhhrrrgg!!!!!
    • View Profile
Re: Autism
« Reply #17 on: April 8, 2019, 10:51 PM »
JM,

First, welcome back to the forums!  Sorry to hear that the original RS thread was shutdown, it looks like it was started after I left RS, so I was never able to read it.  Hell, your thread was started before I even had children so that's why I've never posted here before.

Thankfully, neither of my children have autism, although my wife and my oldest do have some health issues, one of which causes a lot of inflammation...specifically in my oldest boy's brain, which will occasionally have him not act right.  It makes it difficult for him to focus and it has an effect on his school work.  Luckily, we can mitigate his symptoms with medications, but we can't be with him all though the day.  I don't know where on the spectrum your kid is....but I can sympathize to a degree.

A good friend of my wife's has a child who had serious issues with autism and she was able to mitigate a lot of it with diet of all things.  We're talking very strict non-GMO, all natural no preservative type of foods.  Is that something you've tried?

Matt,  My son is minimally verbal.  He uses a few different sentences most of the time, can answer questions with one or a few word answers, and Can ask for what he wants in a simple way and always in the Third person.     We've thought recently about all natural foods.  He currently eats Honey Bunches of Oats, Triscuits, and the occasional pretzel or corn chip.   He drinks 1/2 Lactose free milk and 1/2 Almond Milk as his beverage.   He also gets several vitamens and minerals in a large dose morning and evening dissolved in some concentrated fruit punch.  We take him to a nutritionist about yearly to see how he's doing, and we got a good report last time.  He is having his nutritional needs met - but we're adding different kinds of protein now to help even more.   

The all natural stuff I heard about related to the fact that almost all of our food contains MSG, or other compounds which virtually convert into MSG in our bodies.  There are supposedly kids who became "normal" after removing all MSG and those other types of chemicals from their diets.   

With my son it's very hard.  There is no all-natural Honey Bunches of Oats.   There ARE all-natural Triscuits though, and we've tried those with him.  He likes them.   But milk has it too.   THere is a group lobbying the dairy industry to remove it from all dairy products. 
Please leave trade feedback for me here

Offline Jedi_Master

  • Youngling
  • *
  • Posts: 58
  • Owwwwrrrgghh Awwrrraahhhhhrrrgg!!!!!
    • View Profile
Re: Autism
« Reply #18 on: April 8, 2019, 10:57 PM »
I wasn't a parent yet when this thread began--my oldest son will turn 10 this year, my younger son will be 7 in a couple months--so this is an interesting read.

My younger son was diagnosed with autism in 2015, just after turning 3. His is a severe form that has impacted our family's daily life in a major way. His older brother has had so much to deal with, I feel so guilty having to make the choices that we do.

I can echo the sentiments about the vaccination link. I thought it was all tinfoil-hat talk until my son had a bad reaction to a vaccine and quickly after began regressing in his development, losing speech and motor skills, etc. Now I have looked into enough to see the government and Big Pharma have gone out of their way to keep pushing their formulations and ignore--no, actually bury-- the evidence of the harm they are causing.

I also read a comment about inflammation, and also wanted to share that we have noticed a marked decline of his symptoms whenever he has a fever coming on, as if the inflammation is allowing a bypass of the affected areas of his brain, though the autism always rebounds back. Our developmental ped has been tracking this.

Last summer we had some success with a dairy-free, casin-free, reduced gluten diet (think paleo or keto) but the gastroenterologist had us put him back on a mainstream diet to do some testing, and we noted little change after the switch back. They are still trying to figure out what all that means.

Happy to talk about your journey and ours anytime you want, Jedi Master, though I'm afraid I would be getting more from you than you from me.

I'd be happy to talk with you anytime Muftak.  I was there once.  Have you ever seen a DAN! doctor?  They don't go by that title anymore, but all follow a protocol from the Autism Research Institute, which was founded by Dr. Bernard Rimland back in the 1960's.  He also founded the Autism Society of America.   Both are better organizations than Autism Speaks - who drive me absolutely crazy with their insistence that Autism is caused only by genetics.   Crazy!    Send me a PM if you want to talk. 
Please leave trade feedback for me here

Offline Nicklab

  • Jedi Sentinel
  • *
  • Posts: 12337
  • I saw we fight!
    • View Profile
Re: Autism
« Reply #19 on: April 11, 2019, 11:56 AM »
As a parent I had significant concerns about vaccines and the possible link to autism when we were getting ready for our daughter to arrive.  So we discussed the issue with doctors as we were preparing to choose our pediatrician.  And it was with a sense of wanting to know more, especially since a boy in our extended family is on the spectrum.  He's a brilliant kid, but deals with some significant challenges.  And I knew that my cousins, his parents, were dealing some very significant challenges with him.  One of my co-workers has a son who is high functioning and able to hold a part time job.  My co-worker is also well past the standard retirement age, but continues to work.  And I think it's due in large part to wanting to know that his son will be provided for in later life.

As for our own attempt to figure things out?  What our pediatrician brought to light was this:  that a British doctor named Andrew Wakefield popularized the belief that there was a link between childhood vaccinations and instances of autism in a paper published in a British medical journal in 1998.  Wakefield also went on to attempt to monetize the scare that he had created when he stated that he would be offering new vaccines that would provide the same immunity as the standard MMR vaccine, but avoid the risk of the onset of autism.  That paper has since been retracted by the authors as well as that medical journal, and Wakefield was discredited professionally and British medical authorities stripped him of his license to practice medicine.  But the damage appears to be done in terms of creating a panic about immunizations.

On a related front, my region is now dealing with the repercussions of a segment of the population who avoid vaccines, because there has been a significant outbreak of measles.  Well over 160 cases have been documented in the county adjoining the one where I live.  Some of that outbreak is attributed to some people who traveled from Israel and may have carried the disease back to the U.S.  And now there are other people at risk because of the anti-vax community.  I'm personally concerned because the MMR vaccine is deemed to be about 97% effective.... not 100%.  Our family history with the disease is significant, since an aunt of mine died from the measles in the 50's and I have some adult relatives who were never vaccinated (the pre-MMR vaccine era).  And I'm worried about the persistence of that illness and how communicable it is.  The potential risks associated with avoiding vaccination are actually pretty substantial given some tragic family history and a very real outbreak that is still in progress.  So for me the vaccination conversation is not one that exists in a vacuum.

At present my daughter is 6 and is in good health.  Should she have a sibling somewhere down the line, my concerns are still there.  One point that was discussed between the pediatrician and us was about  the possible link between (undiagnosed) instances of strep throat in children who are too young to communicate their symptoms and the possible onset of autism.  The theory seems to be that the strep infection may start in the throat and make its way upward, resulting in that infection have an impact on the brainstem.  Other research that I've heard about links the age of a father with instances.  I am hopeful that research will continue to move forward in a diligent, methodical and scientific manner. 

What can I bring to the conversation as a concerned parent?  I absolutely feel for other parents whose kids are living with autism.  I really do.  And in no way am I attempting to diminish or minimize what so many families are going through.  Being a parent is challenging enough.  Parenting a child on the spectrum has to present a whole range of emotions and challenges that no one could have ever foreseen.

While social media has helped bring a lot of concerned parents together, I think it has also propagated a lot of erroneous information from sources that may not be properly vetted.  And I think there are some less than principled people who are taking advantage of the sense of despair that a lot of parents feel.  To that end I think that all parents should try to be supportive to one another:  to parents whose kids are on the spectrum, and helping our own kids to understand and be sensitive to other children that might be on the spectrum.  And I think we need to be supportive of any scientific research that has rigorous peer review, and exercise a lot of skepticism for research that does not have adequate vetting.
« Last Edit: April 11, 2019, 04:44 PM by Nicklab »
"Call up a Hammerhead Corvette.  I have an idea."

Feedback

Offline Jedi_Master

  • Youngling
  • *
  • Posts: 58
  • Owwwwrrrgghh Awwrrraahhhhhrrrgg!!!!!
    • View Profile
Re: Autism
« Reply #20 on: March 4, 2021, 04:41 PM »
As a parent I had significant concerns about vaccines and the possible link to autism when we were getting ready for our daughter to arrive.  So we discussed the issue with doctors as we were preparing to choose our pediatrician.  And it was with a sense of wanting to know more, especially since a boy in our extended family is on the spectrum.  He's a brilliant kid, but deals with some significant challenges.  And I knew that my cousins, his parents, were dealing some very significant challenges with him.  One of my co-workers has a son who is high functioning and able to hold a part time job.  My co-worker is also well past the standard retirement age, but continues to work.  And I think it's due in large part to wanting to know that his son will be provided for in later life.

My son just turned 18, and it brought home to us how disabled he really is.  I am facing the same choice that your co-worker now, with deciding how to earn enough in retirement to support us (and him) far into the future, and whether that is best done within, or outside of my current job.

As for our own attempt to figure things out?  What our pediatrician brought to light was this:  that a British doctor named Andrew Wakefield popularized the belief that there was a link between childhood vaccinations and instances of autism in a paper published in a British medical journal in 1998.  Wakefield also went on to attempt to monetize the scare that he had created when he stated that he would be offering new vaccines that would provide the same immunity as the standard MMR vaccine, but avoid the risk of the onset of autism.  That paper has since been retracted by the authors as well as that medical journal, and Wakefield was discredited professionally and British medical authorities stripped him of his license to practice medicine.  But the damage appears to be done in terms of creating a panic about immunizations.

There is much misinformation regarding Dr. Andrew Wakefield, the British gastroenterologist whose paper (co-authored by 13 other doctors) was published in the Lancet in 1998, and later retracted.  All but 2 of the authors retracted their names from the study, and the other besides Wakefield (the lead author Dr. John Walker-Smith) faced similar consequences when a British tabloid journalist named Brian Deer attempted to cast their research in the worst possible light.  Dr. John Walker-Smith had professional insurance however, and was able to fight the revocation of his license, and was eventually successful.  He was able to have his medical license reinstated in the UK. https://www.medpagetoday.com/pediatrics/autism/31590  Dr. Wakefield had no insurance, and came to the United States where he qualified for a US Medical license.  He now practices in Texas at a treatment facility he started called "Thoughtful House."  They specialize in treating Autism.   

If you ever do any serious reading about Wakefield, you will find that he never said there was a causal relationship between MMR and Autism.  Instead, he had a hypothesis that MMR may have caused a form of enterocolitis which he observed in all of the study children, and thought was a new form of enterocolitis which was unique to Autism.   He reported in the "series" that the 10 or so children brought to him were self-reported by their parents to have had the onset of Autism after having received their MMR shots.  Wakefield noted this in the files.   He asked for research into a possible link between MMR and Autism, which still has not been done.  He never offered his own versions of vaccines.  If you have an article which says that, I'd like to see it.

There is much backdrop to the whole story as well.  The MMR was a new version introduced after a harmful version of MMR had previously been introduced in the UK.  It included a Mumps strain (Urabe) which caused meningitis.  The strain came from Japan.  Prior to this MMR (the first in the UK), the UK had offered Measles, Mumps, and Rubella vaccines as separate vaccines.   This is what Wakefield recommended to his patients, rather than the combined MMR.   No one has ever studied the effects of combining several live-virus vaccines on the patients.  https://pubmed.ncbi.nlm.nih.gov/1759507/

On a related front, my region is now dealing with the repercussions of a segment of the population who avoid vaccines, because there has been a significant outbreak of measles.  Well over 160 cases have been documented in the county adjoining the one where I live.  Some of that outbreak is attributed to some people who traveled from Israel and may have carried the disease back to the U.S.  And now there are other people at risk because of the anti-vax community.  I'm personally concerned because the MMR vaccine is deemed to be about 97% effective.... not 100%.  Our family history with the disease is significant, since an aunt of mine died from the measles in the 50's and I have some adult relatives who were never vaccinated (the pre-MMR vaccine era).  And I'm worried about the persistence of that illness and how communicable it is.  The potential risks associated with avoiding vaccination are actually pretty substantial given some tragic family history and a very real outbreak that is still in progress.  So for me the vaccination conversation is not one that exists in a vacuum.
    Part of the problem, as you are aware, is that foreign persons come to the US with active measles and spread it in the population.  This is responsible for the outbreak several years ago at Walt Disney World too.   By the way, 97% effective is highly effective.  Try not to use the term "anti-vax."   Many people (like  myself) are not opposed to vaccines.  We only want them to be safer.  That's not the same as being anti-vax. 

At present my daughter is 6 and is in good health.  Should she have a sibling somewhere down the line, my concerns are still there.  One point that was discussed between the pediatrician and us was about  the possible link between (undiagnosed) instances of strep throat in children who are too young to communicate their symptoms and the possible onset of autism.  The theory seems to be that the strep infection may start in the throat and make its way upward, resulting in that infection have an impact on the brainstem.  Other research that I've heard about links the age of a father with instances.  I am hopeful that research will continue to move forward in a diligent, methodical and scientific manner. 
  One prevailing theory about autism for years was that it might have a viral cause.   My son never had strep though.  It is an interesting theory though.  I'd be interested if there are any good articles on this. 

What can I bring to the conversation as a concerned parent?  I absolutely feel for other parents whose kids are living with autism.  I really do.  And in no way am I attempting to diminish or minimize what so many families are going through.  Being a parent is challenging enough.  Parenting a child on the spectrum has to present a whole range of emotions and challenges that no one could have ever foreseen.
   That it does.  There is a wonderful essay about this called "Welcome to Holland" by Emily Kingsley.   Here's a link:  http://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf

While social media has helped bring a lot of concerned parents together, I think it has also propagated a lot of erroneous information from sources that may not be properly vetted.  And I think there are some less than principled people who are taking advantage of the sense of despair that a lot of parents feel.  To that end I think that all parents should try to be supportive to one another:  to parents whose kids are on the spectrum, and helping our own kids to understand and be sensitive to other children that might be on the spectrum.  And I think we need to be supportive of any scientific research that has rigorous peer review, and exercise a lot of skepticism for research that does not have adequate vetting.
You're correct that social media has fueled much misinformation and propaganda.  For factual information about vaccines, I recommend this link:  https://www.nvic.org/
« Last Edit: March 4, 2021, 05:31 PM by Jedi_Master »
Please leave trade feedback for me here

Offline Jedi_Master

  • Youngling
  • *
  • Posts: 58
  • Owwwwrrrgghh Awwrrraahhhhhrrrgg!!!!!
    • View Profile
Re: Autism
« Reply #21 on: March 4, 2021, 04:56 PM »
For anyone reading this who has a child diagnosed with Autism or Autism Spectrum Disorder.  You may very well be able to receive federal disability payments for your child.  I am in the final stages of applying for disability for my son, and there was an interview they required with a psychologist.  The psychologist asked why we were applying now.  He said we could have applied years ago, and hoped that now, we might receive all the back-payments we would have received had we applied when our son was first diagnosed.   I'll let you all know if we are successful.
Please leave trade feedback for me here

Offline Keonobi

  • Jedi Knight
  • *
  • Posts: 4406
    • View Profile
Re: Autism
« Reply #22 on: March 4, 2021, 10:07 PM »
Hey JM, I'm interested in what the psychologist was referring to. Was it SSI, which is means limited (ie, the family can earn too much)? Sounds like you are a few years ahead of us, so open to advice, even if it doesn't apply the same.

Its been a busy 12 years for my family. Oldest is fully mainstreamed, and really doing very well (probably falling under the radar too much) #2 is doing well, in a dedicated private school we are super lucky to live nearby. #2 has reasonable verbal skills, and is a smart kid, its about getting any of that out of his head. Struggling with learning self direction and daily living, but doing our best. But he puts up with Dad's nonsense, and correctly responds "Star Wars" whenever I ask him what I'm watching on tv.

Big props to all the folks who work in Special Ed, don't know how you don't burn out.
I am not the Stig

Offline Jedi_Master

  • Youngling
  • *
  • Posts: 58
  • Owwwwrrrgghh Awwrrraahhhhhrrrgg!!!!!
    • View Profile
Re: Autism
« Reply #23 on: March 5, 2021, 09:19 AM »
Yes, we're applying for SSI. 
Please leave trade feedback for me here

Offline Jedi_Master

  • Youngling
  • *
  • Posts: 58
  • Owwwwrrrgghh Awwrrraahhhhhrrrgg!!!!!
    • View Profile
Re: Autism
« Reply #24 on: March 5, 2021, 11:50 AM »
Keonobi,  I would love to know what you've done for your kiddos.  We haven't tried anything new in years, mostly because we tried everything we knew, and ran out of ideas.   If you have a book, or a website to recommend, please post it here.   Many are still searching for guidance, and it sounds like your sons are doing very well.   Thanks for posting!
Please leave trade feedback for me here