Mother Guilt Returns
April 22, 2008 by Kristina Chew, PhD
Filed under Health
“And then the guilt starts again because I have brain-eating blood that attacked Hayden.”
So says Dee Cogdill of Benton, Ohio in the April 21st Cleveland Banner; Hayden is 11 years old and autistic. Cogdill and her husband, Ed, took Hayden to Johns Hopkins University to participate in a research study about maternal antibodies (more about this here). In the study that the Cogdills participated in, “an antibody in all mothers of autistic children was found in their blood that was not present in mothers with typical children.” It’s from this finding that Dee Cogdill’s comment about “guilt” comes in, and also the worry that she may have contributed or even caused her son to become autistic.
I’ve noted a similar line of thinking in parents agonizing that their genes may have “given” autism to their child, or that if only they hadn’t done something (had their child vaccinated; eaten fish while pregnant), their child might not be autistic. I still remember the mother of a friend whispering to me “She did everything right when she was expecting him” as we watched her daughter splash water on her son (also autistic) and Charlie in a little wading pool.
While the refrigerator mother theory of autism—that mothers who were “cold” and “withdrawn” actually caused their young children to become autistic—has been widely discredited, sometimes it seems that the theory continues to have a curious sort of half-life. Mothers (and fathers, if they are older) now worry that some biological cause of autism could be found that points the finger of blame at them. Perhaps this legacy of worry that “maybe I caused it” fuels efforts to find some external cause of autism, such as mercury in vaccines. Isn’t the fear that they may “cause” their child to become autistic behind some parents choosing not to vaccinate a child?
As Cynthia Whitfield, whose son Jalen is 9, wrote yesterday in Autism data grows, but not answers:
The cause of autism is poorly understood. Is it hereditary or environmental? A combination of the two? Are there factors not yet discovered?
To add to the confusion, a tidal wave of studies published over the last two years point to a wide variety of suspected causes, including advanced paternal age, advanced maternal age, mitochondrial dysfunction, genetics, alcohol use, prematurity, low birth weight, and pregnancy and birth complications.
As each year with Charlie passes—-and soon, come May, it will be the eleventh—I have been loosening myself from worrying about what cause him to be as he is, and what I may have “contributed” to this. Yesterday I took Charlie to the pediatrician’s for his annual check-up and the whole visit was practically a piece of cake: When we entered the waiting room, he sat on a bench and waited quietly. He followed the nurse’s directions to be measured and weighed and have his blood pressure taken. He followed the nurse practitioner’s instructions to sit and lie down and put her stethoscope on his chest and sat still when he got his vaccines. “He’s really healthy,” said the nurse. He pulled on his clothes after that and followed me out to the car, and that was that.
As each year with Charlie passes, I see more of myself in him, and of him in me. We like order yet appreciate spontaneity. We like, love, need music. We’re overly fond of brown noodles, be they Chinese fun, Pad Thai, or Vietnamese mian; maybe one of these days I’ll introduce Charlie to Japanese udon and soba. We don’t mind some silence.
Apologies for lapsing into sappiness (I’ve started to see ads reminding me that Mother’s Day is coming; cue up those violins!): Perhaps a mother feeling that twinge of guilt is part of being a mother—part of a mother’s love?
Just a thought.
I am highly skeptical about the new theory that maternally derived antibodies cause autism.
Antibodies against natural tissue components are more likely to be a result than a cause of tissue destruction. E.g. anti-heart antibodies are found after a myocardial infarction but they haven’t caused the infarction. Even in an unquestioned autoimmune disease such as type 1 diabetes anti-islet antibodies are present without being the cause (the autoimmune attack is cell-mediated).
If significant proportion of autism cases were caused by maternal antibodies, we would expect “inheritance” exclusively from the mother, a high tendency for younger siblings (esp. if the age difference is small) to be autistic and a very high concordance among twins, regardless of whether they are mono- or dizigotic. Also, it must explain why autism prevalence is so much higher among boys.
I think maternal antibodies shouldn’t be blamed for autism until they are really shown to cause autism. One such study is published (Martin LA et al., Brain Behav Immun 2008). Let’s see whether its results will be confirmed.
I don’t understand why someone would feel guilty about something that is completely outside their control.
I feel guilty about a lot of things, but not about Alex’s autism. This is just the way life is, and you can’t change your DNA or your past. As time passes, I care less about “the cause” except from an intellectual standpoint, and more about “How can I help him develop the skills he needs in life? How do I help him learn more independence and critical thinking skills? What can I do to help his self-esteem and prevent or lessen future bullying in school?”
There isn’t any blame to assign, and like you said, Kristina, as the years pass, and Alex gains more skills, I get to know him better, just as with my 3 year old NT.
My sweet moment, sappy, sappy, sappy, that I will hold onto for this mother’s day, is from last week when he and I were trying out the hammock we had put up on the first warm (65 degree) day in Maine this spring. We were so comfortable squished together, and we were talking about “stuff”, a relatively new skill, and he stopped and said, “Mommy, are we having a ‘conversation’?” I said, “Why yes, we are. Have you had a conversation before?” He said, “Well, I had one last Wednesday with Miss Searles (ST).” I happen to know that is the day she started telling him about “conversation” and what it was. So I asked him, “Do you like conversations?” He thought a moment and replied, “Yes, I do like them.” Very matter of fact about the whole 2 “conversations” he has had! This has put a smile on my face ever since!
Have a great Mother’s Day (in advance!)!
Karen
As a mother, I feel wholly responsible for how my child is doing. Is she happy, healthy, learning what she needs to, etc? If she isn’t, what can I do to make that happen? If she isn’t, what am I doing that’s standing in her way? If she gets a cold, I feel the same as I do with autism. Where did she get this from? How can I help her feel better? How can I help prevent her from being (very) sick in the future, etc. It’s all the same in some ways to me as far as the “guilt” thing goes no matter the topic regarding our children. We love them deeply and we are all they have in life that will protect them, advocate for them, love them absolutely and unconditionally. I think when they aren’t doing as well as we would like to see them doing, we feel automatically responsible and need to know the when, why and how to fix it.
With autism, however, at some point, we do just have to let go of the “why” since (unless we’re planning on having more children) the answer to that “why” won’t do any good at this point fro my daughter. I need to know what will help her and how to get that help. And I’ll always feel responsible and with that comes some measure of guilt when things don’t go as we think they should.
Great post Kristina!
Sappy is sometimes a great thing. It helps get past the stress of wondering if you are doing all the right things and holding onto the fun and joyful moments. I often question the reasons why my boys both have autism. I have even had people question me–quite innocently, “What do you think you did wrong?”
Storkdok…you are right, you can’t change the past. And Kristina this post comes at a great time.
Last night I took my oldest, Dalton to Kindergarten orientation, he actually did quite well. Then I started looking at all the things they would be doing in kindergarten, watching all the NT kids roaming around the room and my head started to ache, my heart sank and the worry set-in. Would he be ok? Am I sending him to the right place? Will he get what he needs to reach his potential? Am I doing everything right??
Then we went home, put in the movie CARS and he started acting out all the scenes, giggling and working hard to enterain us and bring a smile to our face while little brother snuggled up with mom. Those are the moments I hold on to.
Repeat after me. Guilt is a useless emotion … At least that’s what I tell myself on a daily basis.
I don’t blame myself at all for Jack’s autism, although I do wonder what exactly it is and where it originated.
Where I do feel guilty is in what I’m doing for him as his mom. I never, ever feel like it’s enough. I hope one day that I can overcome that …
Days like today really help. Jack is out of school so we went to the park. He was thrilled! He smiled and rubbed his fingers together. He climbed and jumped and spun, always making sure I was within reach. The weather was beautiful … life was good.
I was going to write a comment, but Laura already expressed my thoughts exactly.
Have you read anything by Tenna Merchent? I read her “He’s Not Autistic, But…” last night and was left scratching my head thinking, “say what!?!” She mentions guilt a lot because she blames herself for the shots she let him have, etc..
I am extremely skeptical that maternal antibodies cause autism. None of the testing has been contemporaneous, that is the maternal serum was not collected during the pregnancy but after and usually much after, that is after an autism diagnosis which is at least 2+ years later.
I agree with Maya who makes a number of excellent points that are in conflict with a maternal antibodies cause autism hypothesis. Most cases of autoimmune sensitization are associated with tissue damage and are not necessarily the “cause” of that damage. Damaged tissue needs to be cleared by the immune system. That can easily cause autoimmune sensitization.
There was a case discussed by Revere over at Effect Measure where individuals working in a slaughterhouse developed antibodies to brain tissue following exposure to the brain tissue of the animals being slaughtered. Removing the exposure did resolve the issue for those people.
Sappy’s ok with me and in our house. If I may indulge in another moment: Seeing Charlie get off the yellow school bus (smiling, sometimes and sometimes not). Gets to me every time.
I do think Autism has a genetic cause. No matter what the cause though I don’t think I would have guilt if it was my genetics that caused it. Maybe I would feel differently if I gave birth to M but I doubt it. I do feel guilty for lots of other things though. Like being snippy with her or being too lazy to read her a book when I just want her to go to bed.
This is an intriguing point. Even as recently as a couple years ago, my dad asked me if I had any resentment to him about being autistic (he’s also on the spectrum) – and he was the one who explained it as a different wiring of the brain, and was not given a “prognosis” of any sort (my parents’ only expectation of us is to be decent people to the best of our abilities). I remember being quite caught off guard from that question, and reassuring him that there was no resentment of any kind; that I liked who I was and asked him why he’d ask that.
Kristina,
A small criticism, You are presenting only one side of the picture. As if all autistic children are the same. I cant see why your husband’s colleague who got her kid via DonorX should feel guilt at all?? I am supposing he didnt have the mother anitbody just by coincindence most of the women that selected him.
The fact that autism is genetic is empowering. It is the same bs from Autism speaks which in my opinion is antiparent. To spread such hopelessness is antiparent.
Well, I think, unfortunently, there’s rarely a situation that there isn’t guilt, so you’re describing the rare exception. I know when I “was more severely” autistic (the past tense verb quoted because it’s kind of pointless and protean in my context, and because I hate all of those terms), there was an awful lot of guilt without reason.
Even some people feel culpable for their genetics. Such constructions are powerful indeed in inducing guilt.
Cliff
@The ASMan,
and what 2 children are alike at all….maybe it’s a mother/female thing to feel some sort of guilt, for a variety of reasons…. I actually agree that thinking of autism as genetic is “empowering.” Am glad to say I’m like Charlie—-very best—
Througout life I have discovered that guilt is a useless emotion…even though it is an emotion I often encounter with myself. The thing about guilt is leads to depression and depression does help anyone, let alone the two little guys in my life who need me the most.
none of you have heard of me, but i’d just like to express my admiration of your views on this blog
i’m not a parent of an autistic child, but i am an autistic teenager myself who was raised only by my mum
and i can promise you the media is wrong, autistic kids don’t have a “disease”, we’re not “suffering”, we just see the world differently
i am so glad to see parents not looking who to blame, and just accepting their kids as they are and trying to help them
support your kids, become close to them, guide them and they will be capable of doing wonders