Greetings to everyone! I started checking out the AFF board after learning about the Neurodiversity Movement. I am mom to a wonderful three-year-old boy just dx with Asperger's, so your opinions and experiences matter to me, as I hope to be able to help him navigate to a happy adulthood.
I have two questions for your consideration.
1. I understand where AFF stands on the issue of a "cure" for autism, but what about things like the gf/cf diet that are intended to alleviate the physical symptoms that sometimes accompany autism? I do not refer to behavior, but rather things like chronic diarrhea and/or constipation. I can adjust to Tyler's behavior, but I can't abide by the idea that his digestive/physical health could be in jeopardy. I wonder, also, about heavy metal contamination. How do you feel about parents trying to reduce their child's load of toxic metals like mercury, lead, etc?
Please understand, I do not mean any disrespect, I just want to know from the people in the best position to understand. I want to do what's best for my son, so that he can grow up to be happy with who he is, regardless of the degree to which he chooses to participate in the NT culture, but that he can also be healthy.
2. My second question is about me. I see Aspie traits all over my family, and I'm starting to wonder if maybe I fit in the spectrum, too. My concern is that I'm going through that parental adjustment to ASD which includes amateur diagnosis of everyone! I am very good at dealing with people, and genuinely care about them...as long as I don't have to be too involved or spend too much actual time with them. I have always seen myself as wearing a mask for the world, and I am very empathetic towards people when I am with them, but all in all, would rather avoid being with them in the first place. I think my empathy is an overcompensation technique, to kind of keep people at a distance. I care about these people, and I love them, I just do not enjoy the minute to minute interraction, the having to "play nice" and socialize. I would rather be alone with a book, or maybe just my husband, and kids. I cannot stand parties, and am such an expert at cultivating excuses as to why I can't make it to the next girl's night, etc. I've read that Aspie women are better at "passing" in the NT culture, I wonder if that's what I've been doing. I know this is way to long of a rant, and also not the forum for diagnosis, but I just want to know if there's anyone out there with a similar experience, or if you think I'm totally off the mark.
Thanks for reading all this!
Jodie
may i be the first to say welcome to the place.
Hi Jodie,
you sound just like me, I don't have full blown Asperger's, but I have traits and consider myself to be a autistic cousin. My son is diagnosed AS and we share many similarities. I find socializing and meeting new people extremely difficult but usually manage to compensate by using one of my many "personas" and studying body language. Sometimes though (and usually when I really like someone) I get so nervous and anxious that I go mute and can't express myself, sooo frustrating! Like you I also appear to have too much empathy, I feel too much and at a higher intensity to the majority of people yet some things I couldn't care less about and I can be quite cold at times, there's not much middle ground with me!
If your child has stomach problems then give the gf/cf diet a whirl. But personally, I'd be extremely wary of trying to reduce a child's load of toxic metals etc, children have died through such extreme "treatments".
Jodie! Welcome!
I think your questions are totally founded and important... moreover, I'm glad you've asked them here! There's a lot of junk out there and you really have to fight to get to the truth!
That said, everyone has a different view on things, even here at AFF there are some that think one method/idea is best, so I'm sure you'll get a lot of different responses.
Here are my thoughts:
The GF/CF diet: I think it's interesting... though as an adult aspie I'm not really interested in cutting out foods I like.
I think that if you are desperate enough to try it it may do good for your son. I have heard from others on this board that they have discovered that they have food allergies in addition to AS and that getting rid of gluten has helped them in a lot of ways. I personally think that getting rid of some behaviours rids a person to develop proper coping mechanisms for those behaviours and that makes me avoid some "cures". But i do think that real, physical problems with the digestive track should be addressed.
I'm not really sure what you mean by "reducing the load of mercury". I'm assuming you mean chelation or perhaps the avoidance of vaccines? There is a lot of people out there that agree with that, I am not one of them and I think you may be hard pressed to find those people here. I believe that genes make you autistic, not exterior things after you are born. There is very little (if any) science that backs up the vaccine theory... and children are dying going through those chelation procedures. So if that's what you meant by reducing the load, then no, I do not agree with that.
Lastly, it is likely that there are others in your family that are aspie, or have aspie-traits. It is very genetic. I have picked up on my dad and little sister as being possible aspies myself... I do also think that when you learn about AS (especially if you have it) its hard to differentiate yourself. I am coming off of this phase where I always had to sort each thought and feeling I had or that others shared with me into two categories, "This is AS" or "This is not AS" Its a very normal phase, from what I've seen.
Just my two cents on what you've said. Feel free to PM me.
The neurodiversity movement has naturally come to be the place where you will find the most scepticism toward chelation aswell as other alternative treatments. However, the blogger Kevin Leitch has just closed down his blog with lots of directions for what makes the DAN! organisation so dubious. Sad, but necessary as explained at:
http://www.leftbrainrightbrain.co.uk/
As a parent I think you might be especially interested in the Autism Hub blog ring part of the online neurodiversity movement:
http://www.autism-hub.co.uk
You will hear talk from parents and individuals on the spectrum considering personal experiences, autism in the media and controversies.
Welcome,hope you will like it here!
Hi Tyler's Mom, you found a good bunch here. I wandered in several months ago and now I'm hooked. It is the same with our family, seeing aspies all over the family tree once we came to terms with it. Seeing an aspie in the mirror. We just got news that our nephew has also been identified. That's four out of five grandsons and one out of two granddaughters for my mother --- who is definitely spectrum but would rather die than be anything but "normal."
I read several boards where people shared their experiences with the GF/CF diet and it is a mixed bag. If there are food allergies/sensitivities, you'll benefit. If not, you probably won't see any difference. As I understand it, it doesn't hurt to try it. If it is working for your family, great. If not, stop. Of course, you should certainly run things by your family doctor first.
As for reducing the load of heavy metals, I am also not sure what you mean. We should all avoid undue exposure to heavy metals in the same way that we should all eat healthy foods. That's why all of those toys were recalled. There is no link to vaccines and chelation kills, or injures at best. I am personally convinced that autism is a structural/functional brain difference that is genetic. This is where the science has taken us, and I am a big fan of peer reviewed research. Rule of thumb: if some one is making a lot of money off of their pet theory -- beware!
I have three spectrum kids. They are all wonderful, and each is unique. Listen to your child and listen to your heart and you will make the best decisions for your family.
Welcome aboard!
From what I've heard, a lot of people have reported some success with the gluten free diet - as some others have said, it can alleviate physical problems, making it easier for children to concentrate on learning other skills. Diets and other general health related things aren't considered to have anything to do with a "cure".
As far as the toxic metal thing goes, the only reason to attempt to reduce your child's toxic metal load is if you believe they have been exposed to significant heavy metal poisoning - regardless of whether or not they are autistic. Most studies show that heavy metal exposure has no correlation to autism rates, and many forms of heavy metal load reduction (such as chelation) can actually be dangerous if mishandled, by reducing amount of calcium and iron in the bloodstream.
As far as the Aspies in the family thing, one of the modern theories I subscribe to (unproven as yet) states that the Autistic/Aspie gene is passed along in a dominant fashion most of the time, with spontaneous mutation actually being fairly rare - so it's entirely possible to trace a family "inheritance line" from a diagnosed person.
Hope this helps!
...
I see Aspie traits all over my family, and I'm starting to wonder if maybe I fit in the spectrum, too.
...
Hello and welcome.
You might try taking the Aspie Quiz at RDOS:
http://rdos.net
(Go to the site and then select "Aspie Quiz" on the left side of the window.)
That doesn't yield official results or anything like that, and it makes no claims of certainty. It's just a tool that give you a measure of how likely it is you might have AS.
Re: GCFD. My guess is that any link to behavior is indirect. I figure that if a little kid is having painful indigestion and has no way to effectively communicate the situation, that kid is probably going to misbehave. I've heard that lately, all kinds of people (NT or otherwise) are trying gluten-free diets. Apparently, it's a recent trend in dieting. It might get a bit expensive, but other than that, I see no harm in it.
That's my two cents.
That's four out of five grandsons and one out of two granddaughters for my mother --- who is definitely spectrum but would rather die than be anything but "normal."
I
We must be related! My mom always refers to her own uber-organizational obsession as "autistic," but the minute I suggest she may actually be on the spectrum, she insists that I'm just diagnosing the whole family. It may be true, but almost everyone in my family has Aspie traits!!! Which lead to me previous post.
Additionally, thanks to everyone who replied! I took the Aspie Quiz and thought it was interesting. It showed me some interesting traits that I never knew to be associated with Asperger's. I scored with both Aspie and NT traits. But I am grateful for the information, it is really helping me make sense of myself. And I hope to raise my son to be able to navigate the NT world, but to always appreciate his Aspiness as well.
Many thanks!
Jodie
Forgot something!
In my original post when I mentioned 'reducing someone's load of heavy metals' I was referring to chelation. As parents of a newly diagnosed spectrum kid, we went in many different directions trying to decide what's the best way to help our son. We even consulted with a DAN! doctor, and were given information about chelation. It's so hard to know what to do, and after learning about the Neurodiversity Movement, and learning about how actual people on the spectrum feel about finding a "cure," I now feel as though I shouldn't be trying to "cure" my son of who and what he is. Aspie traits are all over my family, and my husbands, and we have all found ways to thrive. Tyler is perfect just the way he is, and I believe that his unique abilities will lead him to do some amazing things with his life.
I'm verbose.
Thanks again, to all of you!
Jodie
TM- your last post made me SMILE.
I love to hear parents proud of their kids! Especially if they're aspies!
Greetings to everyone! I started checking out the AFF board after learning about the Neurodiversity Movement. I am mom to a wonderful three-year-old boy just dx with Asperger's, so your opinions and experiences matter to me, as I hope to be able to help him navigate to a happy adulthood.
I have two questions for your consideration.
1. I understand where AFF stands on the issue of a "cure" for autism, but what about things like the gf/cf diet that are intended to alleviate the physical symptoms that sometimes accompany autism? I do not refer to behavior, but rather things like chronic diarrhea and/or constipation. I can adjust to Tyler's behavior, but I can't abide by the idea that his digestive/physical health could be in jeopardy. I wonder, also, about heavy metal contamination. How do you feel about parents trying to reduce their child's load of toxic metals like mercury, lead, etc?
Please understand, I do not mean any disrespect, I just want to know from the people in the best position to understand. I want to do what's best for my son, so that he can grow up to be happy with who he is, regardless of the degree to which he chooses to participate in the NT culture, but that he can also be healthy.
2. My second question is about me. I see Aspie traits all over my family, and I'm starting to wonder if maybe I fit in the spectrum, too. My concern is that I'm going through that parental adjustment to ASD which includes amateur diagnosis of everyone! I am very good at dealing with people, and genuinely care about them...as long as I don't have to be too involved or spend too much actual time with them. I have always seen myself as wearing a mask for the world, and I am very empathetic towards people when I am with them, but all in all, would rather avoid being with them in the first place. I think my empathy is an overcompensation technique, to kind of keep people at a distance. I care about these people, and I love them, I just do not enjoy the minute to minute interraction, the having to "play nice" and socialize. I would rather be alone with a book, or maybe just my husband, and kids. I cannot stand parties, and am such an expert at cultivating excuses as to why I can't make it to the next girl's night, etc. I've read that Aspie women are better at "passing" in the NT culture, I wonder if that's what I've been doing. I know this is way to long of a rant, and also not the forum for diagnosis, but I just want to know if there's anyone out there with a similar experience, or if you think I'm totally off the mark.
Thanks for reading all this!
Jodie
If he doesn't end up socializing on his own.... and is having difficulty... when he is ready, get him to practice on people, there are many great resources...
For instance this thread over here
http://forum.charismaarts.com/viewtopic.php?id=1710
Is great for extremely introverted and shy people to start building the habit of expressing their thoughts without offending people, and getting used to expressing their thoughts outwardly instead of always internally.
Certain aspies unfortunately should NOT be giving advice because they are satisfied with living in their own (distorted) world, I've read posts over at WP of aspies talking about sterilizing themselves and whatnot for being unable to hold down a relationship or even be able to socialize to the point where they can get sex for themselves.
I would imagine certain aspies kill themselves because this part of their life is such a struggle, and is hard to get a handle on. Sex and love for a guy is like conversation and good company for (the typical) woman, without it they will wither, wilt and die.
Hi Tyler'sMom!
You are already doing the best you can for your wonderful son - loving him unconditionally!
A mother's love (as I had from my own lovely mother), and assistance in navigating this confusing world, help enormously when children come up against people who do not understand; because, by instilling a solid sense of self-worth, a mother gives her children strength to be themselves and find their individual talents; because, knowing that there is someone in this world who truly loves them leads them to believe that others can, too; and it gives them resiliance to the harder knocks of life.
A mother like you will know whether her children need medical or dietary intervention because you will
know when they are sick or miserable. Trust your instincts, and not the scare stories of someone who wants to make money! An elimination diet is tedious and time-consuming but can improve a child's life considerably if they are found to have an allergy. Just make sure you go through your family doctor or pædiatrician, NOT your local health-food shop!
I had all of my five children on different diets at some stage. Not because I had read some fad about 'cures for autism' - I hadn't realised that our family 'eccentricities' were regarded as autistic - but because their intolerances were causing them to have, variously, asthma, eczema and gut problems. My sister's son went into anaphylaxis when given a piece of cake that contained nuts in a supermarket. Most food intolerances/allergies cause an obvious physical reaction.
My children (three are adults) mostly eat 'normally', now (given that one is vegetarian and another vegan).
I cope much better on a gluten-free diet. 'Normal' food makes me swell so much that I look 24 months pregnant with quads!
I'm so happy I found this forum. Everyone has been so supportive and responsive. Thanks for the encouragement, information and ideas!