Worrying about autism

Jenny McCarthy, Holly Robinson-Peete and Dr. Jerry Kartzinel were on Larry King Live last night talking about autism. All three of them have sons that have autism.

As my own DS approaches 18 months, I find that I have a real sense of fear and panic that this is going to develop in him. I try to bury my head in the sand and hope for the best - the 1/150 will happen to somebody else, but not my child.

The things that I ask myself are: Should I start him on a gluten/casein free diet now? Should I delay and break up his vaccines? Should we go 100% organic? Should I get his blood tested now for heavy metals?

I don't believe the government for one minute about this epidemic. They don't have the answer, but there are lots of aggressive people out there who are trying anything they can and some of those people were on Larry King last night.

I am a researcher by nature. I feel like I want to help build a national database of these kids and take extensive history on them as well as their parents. Run regressions and correlations to help find the patterns. The answer is out there and if we wait on the government, I fear it will be too late for many kids.

Am I alone in my fear?

 

Unfortunately I think this is one of those things you just have to accept may possibly happen to your child no matter what you do right now. It is kinda like SIDS in the fact the researchers have a lot theories but no proof as to what causes it. For now enjoy your children for who they are, and don't keep worrying about what tomorrow might bring.

 

There are a ton of threads going on at TS about this topic right now.

Why don't you check out some of them?

Here

here

here

and many others if you look a bit. There is some very helpful, scientific and educational stuff (and not so educational & Scientific) in some of the threads that maybe able to help you with your fears.

 

QUOTE(first_second_and_last @ Sep 27 2007, 08:35 AM) [snapback]425962[/snapback]
I feel like I want to help build a national database of these kids and take extensive history on them as well as their parents. Run regressions and correlations to help find the patterns. The answer is out there and if we wait on the government, I fear it will be too late for many kids.

UC Davis researchers are examining genetic and environmental factors that may affect the development of autism, mental retardation and developmental delay in children. Autism's environmental factors focus of children's center study:QUOTE
"It's clear that genes play a role in autism and developmental delay, but evidence suggests that the environment is also an important factor," said Irva Hertz-Picciotto, professor of epidemiology and preventive medicine at UC Davis and the leader of the study.
....
Exposure to a broad array of external factors and measurements of important physiologic factors will be compared among the three groups. These factors include environmental exposures from chemicals used in industrial processes, consumer products, illnesses of the mother during pregnancy and of the child after birth, medications and vaccinations, and diet. Researchers will also conduct studies on lipids, specific genes, key molecules involved in the working of the immune and nervous systems, and cell-to-cell communication and metabolism.



Here is another thread you may want to read: Interesting articles on how genetic predisposition plays a crucial role in laying the neurological foundations of autism

 

Autism does scare me too, especially since it is rising so much and they don't know what is causing it. But unfortunately I also feel like there is nothing I can do to prevent it, like Jenn mentioned like SIDS, and that scares me too. I just try not to think about it too much.

 

Like every mother I am concerned with autism, especially since it is on a rise. I do believe that genetics play a role, but I also believe that there are environmental factors. For my family I've chosen an organic diet, and have delayed all vaccines until the age of three. I'd rather be on the safe side and try to prevent this anyway possible. JMO

 

I don't think worrying about it is going to make it any different - if your child is going to develop it they will regardless of vax's, environmental issues etc...my nephew was born legally blind, deaf and autistic - my SIL had a normal pregnancy, no exposure to anything and he was born that way...they've done extensive genetic testing and you know what - came up with zilch...its just a blip - nothing she did to cause it and nothing she could have done to prevent it or know....

 

I am worried too and I don't trust half the things I hear. I do what I can and then put the rest out of my mind. I have enough to worry about. What do I do? No more vaccines for us till 3. No flu vaccine. Only organic food. Only safe, chemical free shampoo, washing powder etc..Eating lots of fruit and veggies. Purified water. Glass bottles, stainless steel sippy cups. Limited TV. I log onto organic consumers association every now and then and get e-mails from Dr. Mercola. Of course half of this has nothing to do with autism but I want to keep them as safe as possible. I'm not a weird hippy but I feel like these are the basics.

 

I guess I don't worry about them getting it, I just hate the feeling that I might make a choice that pre-disposes them to it. The whole MMR link to Autism does sound very unlikely, especially since thimeresol is no longer in it, but I still have hesitated to get it for them. I was thinking around 2, but now I'm leaning towards 3. MMR scares me also because I'm not clear on what their chance of reaction to it is compared to other vaccines. I'll have to talk more to their doctor at the next visit.

 

I know how you feel. The anxiety never ends. And tv doesn't help because they're always underlining your anxieties.
These precious creatures have been entrusted to us and we need to do the best we can for them.
The thing is that I think sometimes we have too much information, out of context, without the data or the knowledge to assess what we're looking at. It can be overwhelming.
Do you have reasons to think there is something wrong with ds? Or a strong feeling that something is wrong? If yes you can get him assessed. Although it's too early to diagnose someone should be able to tell you if you have a reason to worry or not and then you can be proactive if necessary. Hopefully you can find a dr you trust with whom you can discuss things and reach an agreement that you feel comfortable with.
Take care of yourself and take it one day at a time. Let people who are specialists help you figure things out (pedi, child psychologists and the like)
:hug99: :hug99:

 

If this makes any difference, I fully believe my son was born "different". He's always been this way, it's just something in the way his brain is wired. His genetic tests, lead tests, etc. all came back normal.

I don't think you can put kids in a bubble... well, I guess you can what I'm trying to say is that you shouldn't. Until someone can prove 100% that x or y causes autism, you can't let that factor into your decisions. Just use the information you know to be true when making them. Whether it's fax or no vax, organic or not, etc.

 

QUOTE(ohiomom @ Sep 28 2007, 05:37 PM) [snapback]427816[/snapback]
If this makes any difference, I fully believe my son was born "different". He's always been this way, it's just something in the way his brain is wired. His genetic tests, lead tests, etc. all came back normal.

I don't think you can put kids in a bubble... well, I guess you can what I'm trying to say is that you shouldn't. Until someone can prove 100% that x or y causes autism, you can't let that factor into your decisions. Just use the information you know to be true when making them. Whether it's fax or no vax, organic or not, etc.


is your ds autistic?... I missed that if it's the case...

It's funny this was brought up...my dad recently sent me an email on vaccines, kind of freaking out. I had to kind of laugh b/c of course I've heard the debate many, many times...but for him it was the first time he'd ever heard something like that. I did a little research and discovered that most vaccines are now mercury free. And the studies with any links at all are related to the mercury inclusion in those shots. Now i'm not sure about the flu shots..but IMHO healthy kids should not be receiving things like the flu shots and the rotovirus shots... those viruses change every year..even within a year, so the drug companies are playing guessing games on exactly which strain of virus will be out anyway. Not worth it.

The other thing to consider... one thing I learned while I was a teacher is that there is a huge spectrum on autism, add, asperger's syndrome... The definition of these things and diagonsis of them has gotten much more specific in the last 20-25 years. Prior to this many children with symptoms on this spectrum were simply labelled as mentally retarded or slow or some other diagnosis. So to some extent when diagnoses gets better then you will see the rates rise. Same kind of thing has happened with cancer rates... 100 years ago it was very difficult to diagnose cancer until it got to be extremely obvious. Women with lumps in their breasts didn't necessarily think much of it b/c there are tons of benign things that can cause lumps in your breasts... get the picture?... so they wouldn't know they had breast cancer until it was so bad they were dying from it. Anyway, my point is when diagnoses gets more specific and more accurately made then we can expect to see the rates rise simply b/c of how many undiagnoses cases were happening prior to these new definitions and methods of labelling.

Another thing to calm your fears... autism is not a death sentence. We want the best for our kids..it would be heartbreaking to see your child struggle with this. But it's just a label... there are varying degrees of it, and many, many children do not fit the "rainman" perception we have of it. My brother is one person who probably went undiagnosed as a child. he still has no label. But when you look at how he has been as a child and how he is as an adult he fits a lot of the categories under aspberger's. My mom herself has done research on the sly and fully believes now that he probably was one of those "kids".. It helps her now just b/c his whole life she's felt frustrated trying to deal with him and figure him out. Understanding now that there might be a reason for this difference has helped her a lot in terms of not blaming herself for "the way he turned out." Not that he turned out so bad...he's a ph.d. student in a field of engineering that's pretty complicated.... he just has some social issues and adaptation issues.

I also taught several kids that fell on that spectrum.. and for the most part they were totally normal kids...they just had to have some adaptations to help them handle various aspects of schooling. They had their strong suits just like any other student though. I think it'd be good to look at some of these stats to clarify what the rise in "severe" autism looks like.

 

Great post Susanah. Ohiomom, Alissa, has said in the past that her son does have autism.

I agree with all you have to say! I was actually surprised to learn that some Learning Disabilities now fall under the autism spectrum. Unfortunately, when most people hear autism, they think of the kid that spins, flaps, and is totally non-communative, wheras the is actually a VERY small goup of kids that are under the spectrum.

 

You know, I just realized I have to ask dh's older cousin about this... well she's really a cousin of his mother. We are marked in their will to take "custody" of their adult ds. (before you stand in awe..they are extremely organized and have everything set up for him to be in a home...either when they get too old to care for him...or after they pass away.... they simply request that we keep the flexibility of living close enough to him or having him transferred so that we can visit and make sure that they are properly caring for him.) he is the severely autistic "arms flapping", rocking variety. he's still able to communicate basic needs... I'm hungry...have to go to the bathroom..able to go out for a day program "job".. but I've never asked her if she feels there was any cause for her ds' autism. He was born in Cuba in the 70s. I think she'd probably say genetic b/c I do know she and her dh decided not to have any more children.

 

Yes it freaks me out too. I guess it didn't help with the whole Jenny McCarthy thing came out the week befor we were going in for vacs and flu shots.

Alissa I was just wondering how old your son was when he got his MMR and how long after did (if not before) di he show signs or was diagnosed with autism?

Cari

 

Your not alone. My 2 yr olds are not vaccinated (ever), we aren't against vaccinating just because of Autism, there are a LOT of other reasons why we chose not to. People probably think of me like I have two heads, but I really couldn't care less. At least I can say that I have actually done my research (on both ends of the spectrum) and feel totally comfortable with my decision. The thing that makes me sick is parents going to the doctor and just signing the waiver for their kids to get the shots, not even knowing what they are getting vaccinated for .

It is very important to me that my girls have healthy bodies and minds, one of the reasons why we don't vaccinate. We also have switched to mainly all organic foods, cleaning supplies/materials, not ever using the microwave, etc. The girls hardly ever have a sniffle, I can count the number of times BOTH have been sick on one hand. We go out in public often, so they are in no way "sheltered". In fact, the only times they have ever gotten sick was after a Well Baby Visit. I just couldn't imagine voluntarily allowing someone to inject a numerous amount of toxins into their bloodstreams all at once. A lot of people don't understand that it goes SO far past Autism, babies die from vaccinations...and it is not uncommon in the least. The ingredients in vaccines are disgusting, I wouldn't let my kids eat some of the ingredients...why would I inject them into their small bodies?

I could go on and on, but I won't...

 

I would just like to echo the pp that autism is not a death sentence. Early detection is the key to intervention and your awareness is admirable. I have a student (10th grade) who is autistic, though high functioning. He is incredible and I adore him already. He is awkward to be sure but smart, funny, and great to be around.

 

i also believe there is a genetic connection.

 

Thanks for the responses. I hope that I haven't offended anyone by being worried. I don't believe it is a "death sentence" to have autism, but the media that's out there right now does have me scared.

We have opted to go almost exclusively organic for the kids (for now) and will be delaying and breaking up vaccines. Neither baby will have a flu shot this year.

Aside from that, we'll take whatever is thrown our way.