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I'm a 20-something outspoken Latina with Marfan syndrome. I blog about being the mother of two sons with special needs while having a genetic disorde...
 
 
 
 

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I Don't Care What Caused My Child's Autism

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DSC_0913I went to a little party for other “autism moms” recently. In between the snacking, catching up, and you-won’t-believe-what-the-school-did-now stories, a conversation about the potential causes of autism began.

If you follow the news at all, you’ll see theories as to what causes autism nearly every week. Maybe it has to do with the time of conception. Or the mother’s stress level or use of anti-depressants during pregnancy. Then there’s maternal antibodies (from the flu?), or the theory that autism is actually an autoimmune disease. Confused yet? I know I am!

But here’s the thing:

I don’t care to know what caused my son’s autism.

So many of these theories are things that aren’t preventable. I mean, do researchers think people are going to abstain from sex for three months out of the year to prevent autism? Not using anti-depressants might seem like an easy choice, unless you’re the woman who needs them in order to live. How much of stress can we really control? Even getting the flu vaccine doesn’t always prevent the flu.

While I was pregnant with the Menininho, my husband took a job across the country when I was 10 weeks along. My mother and sister moved several states away at 14 weeks. I alternated between my brother living with me, a best friend living with me, and living alone. I also accelerated my Masters degree so that I could graduate at 34 weeks pregnant, and then moved 3 weeks postpartum so our new family could all live together. You could say that I was stressed. Some of those stresses could be foreseen before we decided to have a baby, others not.

But if the Menininho’s doctor could look me in the eye at his next appointment and say “Maya, we know for a surety that your stress during pregnancy caused your son’s autism,” what good would that do me? I can’t change anything. It wouldn’t have even helped with Baby J’s pregnancy because how do you easily quantify stress? The only thing it might do is add to the stress I’m already under trying to address M’s diagnosis.

I battle guilt being a mother on a daily basis, “typical” mom guilt: Are my kids eating a balanced diet? Is it a problem that M asks for Sid the Science Kid and Ellen DeGeneres by name? Then I add on the “autism mom” guilt: Are our behavior tactics the right ones? Should I have said yes to that second session of speech therapy a week? I don’t need to add the guilt of the idea that I could have somehow prevented the Menininho’s autism on top of that.

No. Instead I’ll focus my energies on finding the right treatments. What’s done is done, and dwelling on whether I could have done something differently only takes valuable energy away from taking care of my boys. Call me when scientists find a cause we can prevent but until then, you can find me enjoying my boys and trying to beat autism.

Photo Credit: shward.

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SunbonnetSmart.com 66 pts

Hello! A very positive approach to treatment would be to go to the www.westonaprice.org web site. There are many families with autistic children noticing profound treatment results after nutrient rich diets of cod Liver oil and raw milk from clean, grass fed and pastured cows. To get you started, consider going to: http://www.westonaprice.org/childrens-health/autis... a very good article with forward motion and no blame, although a convincing scientific explanation is offered. Also, removing toxic mercury from children's system, and adults as well, seems to greatly improve capabilities. John BlogHer group "Raw Milk is Smart" to learn more after you exhaust the Weston A. Price site. Don't think that nothing can be done. You will be amazed when you start talking with mothers of autistic children and come to a position of hope for the better. Join a Weston A Price Foundation group in your area to find these mothers. Much Love, Fondly, Robin

DebbieCH 5 pts

I do think that we need to research what causes auticism, but it can't be a blame game. No one knows for sure yet what causes it. If you have a child with auticism work on the treatment too.

SusanFowler 6 pts

While you can't change the past, you CAN change the future-- and if there is something I can do to prevent my child from having autism, then you better believe I'm going to do it. So while I agree you can't live in the past of "what if's," I do think it's important to find out why so that there is a different future for other children.

wantapeanut 7 pts

I'm conflicted on this one. On the one hand, if I found out something I did caused Moe's autism, I'd be devastated. And like you say, there isn't anything I could do to go back in time.

But as the recent UC Davis MIND Institute study showed, there are at least 2, but probably many, distinct biological causes of autism. If knowing the type, and the cause, would help me choose the right course of treatment then I'd absolutely want to know.

And of course, if knowing would help other parents and children, we should know.

MarfMom 6 pts

wantapeanut I'd love info on the study if you have it! I think we've exhausted our search for genetic/biological causes thus far, but if there's something new, something that could potentially help Baby J, I'm all ears!

trigirl13 6 pts

I work with children who have a wide range of communication challenges, some of whom have autism. I also worked for several years in an autism clinic. My goal is always to look at how a child communicates, what his/her needs are, and how to enhance that communication to make it as clear and efficient as possible. So, to that end the cause of the communication difficulty is irrelevant. All this to say I can see where you're coming from :)

Jane Byers Goodwin 19 pts

In my long - longer than some of you have been alive yet - career, I have met thousands of SPED moms, most of whom were more interested in loving, nurturing, and finding resources for their children than in placing blame on someTHING or someONE. I could not help but notice that these were the parents whose kids tended to flourish, bud, and bloom. The parents who spent their time, resources, and focus on spotlighting "blame" and making "demands" instead of using this energy on their children. . . . . well, if you feed and water and talk to a houseplant, it will flourish, but if you spend all your time trying to figure out where you could have gotten a better deal, better soil, better sunny window, better plant food, and not taking delight in each little blossom it gifted you, etc, that same little flower is going to droop because even though you think you're concentrating on it, you're not..

The trouble with having children, as Erma says, is that after you have them, you have them. None of us were able to pick and choose the baby we had, and all of us have to play the hand we were dealt. Fortunately for the universe, there's that "intense love no matter what" thing that saves us all from devouring our young like angry stickbugs.

Our lives are like chess games, already well begun, when we get our children. With one more piece added to the board, all we can do is play the game we're given as best we can, and not waste our time and energy brooding, muttering, and whining about who was responsible for this pattern in the first place.

I loved this post, and I believe you are right. Very, very, very right.

That being said, and I hope it was done in a loving manner because that was the intention, let me now say this:

Tone it down, Ginger. Take the anger out of all that energy and focus your strength on your child, not the world that dealt you what you seem to consider such a bum hand. Focus on helping your child find and bring out all the positives that he/she surely possesses, and try not to use yourself up finding "reasons" that probably aren't there. Whether we like it or not, sometimes circumstances just fall from the clear blue sky..

We don't get "redeals" in life. Play the cards you've got, as best you can, and don't waste your child's irreplaceable time on this earth with anger because he is what he is. You are what you are, too.

Bibliomama 7 pts

I have a rule against getting personal in blog comments so I won't say what I really want to about Ginger, who seems to have willfully misunderstood your post - which I love.

svbenoit 7 pts

In the last 45-50 years since having an organized list of symptoms with which to diagnose schizophrenia, the same list of potential causes arose . The flu during pregnancy, material mal-adaptation (code word for bad mothering), other viruses, etc. Unfortunately for my mother (now deceased), my brother was incorrectly diagnosed from age 20 to about 30. Then, a clear diagnosis of bipolar with psychotic features. Back in the 70s and 80s the mother blaming thing went on from male psychiatrists. My mother blamed herself for a long time until she joined N.A.M.I. and got a chance to bond with other parents. She was such a wonderful person--so sad to see her feel badly about it. She died thinking that my brother had settled into a medication routine and was relatively healthy/happy.

I'm with you. Once you are a mother with an autistic child, forget about the causes and concentrate on making the child's life as happy as possible and be as kind to yourself as you can. Let the scientists ponder until a "cause" theory persists for several years. Then maybe pay it some mind. Or maybe when your baby is old enough to have children of his/her own. Until then, be a parent not a scientist.

Thank you for this blog entry.

GingerTaylor 5 pts

I have a rule against criticising other autism parents for the way they parent, but I am going to break it here.

You are admitting that your child may be chonically ill and saying you don't care how it happened? How is that NOT approaching medical neglect? What you are saying is, "My child may have an autoimmune disorder that is causing brain inflammation, a mitochondrial disorder that does not allow his brain to operate its higher functions, he may be poisoned by pesticides, aluminum, mercury, lead, arsenic or dry cleaning chemicals, he may be have a metabolic disorder that leaves him glutathione depleted, he may have PANDAS, he may have gastrointestional damage, but I am going to ignore all that, because it is just to much for me to process." And since autism has multiple causes, even multiple environmental causes, how do you find the correct treatment if you don't know what caused it? And how do you prevent it from happening again?

I can't imagine anyone writing an article that says, "I am not going to try to find out how my child got cancer, asthma, diabetes, insert chronic illness here. I don't care."

I know this is terribly judgemental, and I am sorry to have to be so frank, but I have fought tooth and nail for my son's health since his autistic regression and I earnestly do not understand this position. And how you can be proud so proud of this stance as to write about it publicly. And how others can praise you for it?

If your child has the potential of having an autoimmune disorder, is it not your legal and moral obligation as a mother to find out? If his brain is in an active state of inflammation, remaining untreated, with more damage being done to it every day, how is that good parenting? Help me understand.

MarfMom 6 pts

GingerTaylor

Wow. Well, you’ve certainly made some assumptions here. I could spend a lot of time going into my son’s medical history, but it’s really not anyone’s business. It’s apparent you’ve misunderstood my intent. I’m not saying that I choose to neglect my child. I’m saying that knowing nothing can be done to reverse his autism, I choose not to spend energy on what can’t be changed. What I will say is when my son started showing symptoms of autism, I doggedly pursued a diagnosis so that we could start helping him. Then, our family spent a lot of time and money looking into every avenue that might lead to a medical cause and therefore treatment of his autism. There is nothing that caused my child’s autism that we can do anything about now. I stand by my statement: I am too busy shuttling my son to therapy appointments, researching treatment options, helping him improve any way I know how (and he HAS improved), and enjoying him and his brother (it’s a privilege to be their mother) to spend any time wondering if I could have done something differently. So no: I do not care to know what caused my son’s autism. For him, there isn’t anything to be done about it now and my energy is needed elsewhere. To suggest that I would allow my child to suffer without knowing anything about him, me, or our family is cruel and ignorant.

My Son Has 2 Brains 8 pts

I love this post, I think for us moms raising kids with special needs, we have way too much to worry about. You have a very healthy perspective!

amanda75 5 pts

Great post! I couldn't agree more! Thank you for sharing!

@MotherUnadorned 8 pts

I love this post. You're so right. All we can do is move forward and be the best parents we can be. Get the best therapies and make our littles' ones lives happy and full of joy. Thank you for sharing your perspective!

Conversation from Facebook

Maya Brown-Zimmerman
Maya Brown-Zimmerman

Thanks for the discussion! As I mentioned on the blog post itself/the comments there, this is not about not being ready to face causes, but more about accepting the fact that we've exhausted the search for causes that are treatable at this point (genetics, autoimmune, etc.). I definitely think research to find the cause(s) of autism is worthwhile because, as both Jennifer and Brooke said, if the causes are preventable I wouldn't want other people's children to go through what my son and our family are dealing with. I wrote this about choosing not to worry about what I could have done differently, because I can't go back and change anything. :-)

Brooke Harshbarger Schmidt
Brooke Harshbarger Schmidt

Absolutely agree with Jennifer Jacura. Some families may not be ready to face causes, but with my son's SPD and food allergies, I have reached a point where I'm ready to help prevent it from happening to someone else. And I started by reading Robyn O'Brien's The Unhealthy Truth and changing our diets one step at a time.

Jennifer Jacura
Jennifer Jacura

I'm the opposite. I want to know. Not because it will change anything with my daughter, but because that knowledge might help another family in the future. I also feel my daughter deserves to know, so if it's genetic she can make an educated and informed decision when it comes to having children of her own.

Surviving a Teachers Salary
Surviving a Teachers Salary

Kudos!! I feel the same way about my son!

Heather Heywood
Heather Heywood

my son has a severe and rare heart defect, among other issues. his immunologist nagged me for years to see a geneticist. i just don't care what caused asher's heart defect. knowing the cause of your child's special needs doesn't fix anything. it won't give asher an aorta, and it won't make him grow up. so, i say, "meh. i don't want to know."