My Family's Experience with Autism

This blog is to chronicle my family's experiences with the autism spectrum -- it is NOT indicative of any medical or diagnostic truths. There is so much information out there, much of which is presented as facts, when, in truth, they are unproven and contain unsubstantiated pieces of information. I just want everyone to know that this blog is ANECDOTAL and based on ONE FAMILY'S EXPERIENCE; it does not exist to present scientific facts (unless I specify otherwise).

Sunday, January 16, 2011

Unwanted Thoughts

More and more is being learned about autism. There are so many different theories. Different people have different ideas as to what's the best thing to do about reducing risks and treating those already affected. Sometimes these are based on falsified data (i.e. coming from Andrew Wakefield's study). Other times, the studies are valid, but inconclusive. Even when there are some clear results to base theories on, people can't seem to agree. Sometimes these make sense. Other times they just seem to come out of left field (which is not to say that they are incorrect).

Recently, a new thought has been published and put into the general media. Now they are hypothesizing that children born when pregnancies are close together (second [or later] pregnancy starts before firstborn is 12 months old) can increase the risk of the second (or later) child being eventually diagnosed with autism. I still haven't read the source study -- just things that are published for the masses to ingest and interpret. Normally, when new theories are announced, I'm jumping on trying to locate the source report. I'm trying to use my experience and education to understand whether there is any validity to the conclusions that are drawn. This time, I just haven't been able to bring myself to do it.

Is it because I'm tired of the multiple stories and frustrated that, even though we are learning more, it just feels like we just don't know anything? I know I'm not the only one who feels that way. Through Facebook this morning, I read an article published on CafeMom by someone who is also frustrated by the constant barrages of potential theories of the cause(s) of autism and that writer announced that, as of right now, she just doesn't care until they KNOW (source = http://thestir.cafemom.com/big_kid/114839/i_dont_care_what_causes). Or is it because I'm closer to this profile (because of my choices) than any other story I've heard thus far? I made the decision to try to get pregnant when Daniel was a year old, and when he was about 13 months, we were successful. The study (from what I understand) only talks about those pregnancies separated by 12 months for the increased risk, but does that one extra month make that much of a difference?

I'm sure I've said this before here.....I'm willing to bet most parents who are faced with a child with any disability is going to wonder what they've done that may have caused this to be, even if it's just for a moment or two. I know for myself, I've replayed so many things that I've done and there are countless things that I'm not proud of when it comes to the way I've raised my children (Daniel as well as the twins). This includes things like taking a medication when I was pregnant with the twins that, and I was warned about this, no one really knew whether there was any potential harm to the fetus. I took it because it was believed by everyone, myself included, to be the best chance of having a healthy pregnancy and healthy babies. But I knew that it was a Category C medication and the teratogenic effects were unknown (at my request, my doctor has reported autism to the FDA in regard to this medication as a single incident report -- not known to be related to this medication). Did that cause autism in the twins?

Now there's this new potential risk factor that I chose to expose my children to. I'm afraid to find out if this is a real cause or just another hoax, or something in between. Like the writer of that article, in the end, I know it doesn't matter what caused autism to affect my children. What does matter is that they are autistic and that we need to do whatever is possible to help them get through these years until they are able to take care of themselves, in hopes that they will eventually be capable of doing just that. But every once in a while, those thoughts creep in there....

1 comment:

ErinFebruary 11, 2011 at 11:05 PM
This new study has me on the brink. My twins were diagnosed in December, they are 2, they are my first kids. I also have a 6 month old.

The thing is, this new study points at low folate and iron reserves because of a shortened amount of time between pregnancies. I had hyperemesis with both pregnancies and was sick for 30+ weeks with the twins, I could barely keep down a Flintstone's vitamin on a good day, I know my folate was low- it had to be. My iron was so low after they were born I needed a transfusion. If this study was true, I would think hyperemesis Moms would be a group that had a high frequency of autism because they would be high risk for low folate and iron regardless of how many months between pregnancies- from what I've read on the hyperemesis.org, this doesn't seem to be the case.

On the flip side, if it is true, I have the guilt that this is something *I* caused, because I couldn't take being even sicker. I couldn't take any more folic acid, I couldn't take any more iron...

Not something I wanted to face just weeks after a diagnosis. These studies all kind of suck that way.
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A Little Bit About Me and My Family

Every once in a while, something happens to a family that seems to change everything, whether that change is positive, negative, or in an uncertain direction. One such thing happened to us in March 2009, when we were informed our 26 month old twins (girl/boy) were BOTH on the autism spectrum. Their older brother (nearly 4 at the time) had always been ahead of the curve for most developmental milestones, so we had never really considered that some of the delays the twins were having had anything to do with autism. Well, we were wrong. Since then we have been learning about learning techniques and doing everything we can to make sure they get any and all help they need so that they can live normal lives. This blog chronicles that journey.

The Autism Pizza

I don't know where this came from originally, but I found it on a post on Circle of Moms. It's a good explanation of how things line up on the spectrum.

1. The Crust: Lack of Social Interaction (poor eye contact, not sharing interests with you, no pointing/gesturing)

2. The Sauce: Impaired Communication (possibly no speech, poor conversation skills, repetitive language, echolalia, no make-believe play)

3. The Cheese: Stereotypical Activities & Interests (extreme routine, strong interest in certain things, stimming [flapping, atypical play, etc.] -- like spinning wheels, lining toys up, stacking, etc.)

If you have all of those things: crust, sauce, cheese, you made an Autism pizza. It might have different toppings, but you can look at it and know it's still a pizza. If your pizza doesn't have sauce, that's Aspergers's. If your pizza is missing more than that but still kind of looks like a pizza, that's PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified)