Infertility and Autism
I once said that I would do anything to build my family–even to the detriment of my own health. I certainly thought a lot about whether the fertility drugs were increasing my cancer risk, worried about very real possibilities such as OHSS. And yes, in the back of my mind, I wondered how much we really knew about how these drugs would affect the children created in the process far down the line, but those weren’t the risks I focused on. I worried about immediate issues such as IUGR and premature birth. I worried about genetic disorders. I worried that I would never parent.
Several news sites reported over the weekend about new studies that link fertility drugs and autism. ABC News reports that children born to women who used fertility drugs are twice as likely to be diagnosed with autism.
The study, conducted by researchers at the Harvard School of Public Health and presented Wednesday at the International Meeting for Autism Research in Philadelphia, found that autism was nearly twice as common among children of women who were treated with the ovulation-inducing medicines than women who did not suffer from infertility.
In addition, “The longer women reported being treated for infertility, the higher the chances were that their child had an autism spectrum disorder.”
The study has yet to be published, nor is it complete. These are just the initial findings. ABC News points out that children with spectrum disorders often have older mothers, and that older mothers are more likely to need assistance to conceive, therefore begging the question–is it the treatment or age? And Momlogic points out another possibility: “Fertility treatments are also linked to increased rates of twins, triplets, premature births and low birth rates — which are all indicators of autism in and of themselves.”
There is nothing to do with this information because the studies are still in their infant stages. They’ve found a connection between the usage of Clomid and autism (the longer you remain on the drug, the higher your chances of having a child on the spectrum–though the threshold number of what constitutes “longer” hasn’t been given) and IVF and autism. Nor is this new “news”: people began reporting on it back in 2006 and the subject comes up from time to time as the studies continue.
But it made me feel quiet, like I had crawled into the bottom of a sleeping bag and zipped it closed. Curled up against the puffy down and slippery material, the space dark and muffled.
41 comments
Wow. That is crazy!!! I’m so curious as to what they do find out through more research and testing.
wow, interesting. I’ve got to follow those links and see what I can find about the studies. I’m going to a conference this weekend, interested to see if there will be anything on this
uggg….Mel, did you read the comments so far?? Don’t know why I’m surprised. People can be so disappointing
I would be really curious to find out (though these instances are rare and thus hard to study in any real way) if children born during non-medicated cycles to otherwise infertile women were also at risk. Or whether it mattered the diagnosis, like whether or not male factor vs female factor caused an increase in autism outcomes. Basically, as with every medical study ever published, I wonder about the extent of causality, and whether or not the causal ties being proposed are thoroughly vetted.
I mean, as you (and Momlogic) point out, is it the drugs that cause autism, or is it egg and/or sperm quality issues? Is it in absence of age-related factors? Is it the actual process of what happens to the embryos in the IVF process, or is the tie found in cases of IUI as well (or has that even truly been thoroughly addressed, because as the quote says, it’s medication vs. women who aren’t diagnosed infertile– who says those aren’t technically completely separate populations who otherwise shouldn’t be compared)?
Anyway, as always, food for thought… I will be very interested to read the actual conclusions once this study has been finalized.
There are very few known causes of most of the diseases out there. We know that bacteria cause some illnesses, which is great because we developed antibiotics to treat those illnesses. Most diseases are such a complex combination of genetics, mutations, and environmental factors that the root cause is unlikely to be known. It’s great that the researchers are “noticing trends” but that doesn’t actually mean anything in the long run. Unless the mechanism is tracked and located, stories like this merely serve to place guilt on the people who have participated in whatever activity is being studied. To be fair, I think the researchers only intend to draw attention and therefore funnel more money into further research.
Interesting research. I think I’ll skip reading the comments associated with that article though…I can only imagine. blech.
My cousin has autism. My uncle is convinced he is autistic because my cousin was conceived through IVF. Of course there is no evidence to prove this. My cousin is now 18 years old, so the IVF was done some time ago and I know the IVF procedure has developed and changed a lot since then. Perhaps whether the child is at risk of autism or not depends on so many factors, but are the drugs in the protocol one of those factors? Definitely food for thought. It’s something that keeps me going back over on whether or not IVF is an option for us.
I read about this, and I’ll admit the title alone made me panic a bit. After I read it I felt a little better, for a few of the reason you mentioned above. Thank you for addressing this and clarifying some of the things that the initial reports did not.
Amy at When You Gotta Glow posted about this as well and made some great points: http://whenyougottaglow.blogspot.com/2010/05/infertility-treatment-and-autism.html
Ugh. One of my twin sons was just diagnosed with autism spectrum disorder. However, both my brother and one of my first cousins both have children with autism as well, and neither had their children later in life or underwent fertility treatments. So, take this stuff with a grain of salt. Right now, what all the experts really know about autism is about the size of a grain of sand.
I really wish they wouldn’t publish these things until the results were more certain. They published early with the vaccine/autism hype and that was so thoroughly disproved that JAMA removed it from the past issues of magazines.
That said, it seriously sucks that infertility sufferers have yet another thing to worry about. {{{Hugs}}}
Wow – this is really interesting to me. I haven’t read about a connection before (I had heard about some connection to a mother’s age…but nothing specifically about ovulation-inducing medication and autism). I used Clomid to conceive my son, and he has autism (he is almost 5 now). I was only 25 when he was born. I started crying when I read this…I can’t help but feel guilty at the possibility of his autism being my “fault.” 🙁
thank you for sharing the article. that is very interesting, frightening, etc. but it seems there are so many other factors leading to autism that i don’t see it being a deciding study until more information is gathered.
as the mom of twin boys, I held my breath until they were 18 months old…I talked endlessly with John and my mom about the MMR (when there was still talk about it) and whether we should do it…I just held my breath until I could be sure that Autism wasn’t one thing we were facing.
That said, my heart breaks after reading this. IF robs us of so many things, it makes us worry about soooo many things, it takes and takes from us and to know that what it might give us is a child that is autistic is just another slap in the face.
I worry about my clomid use, I worry about the high level of hormone in my body with the IVF, I worry and worry about cancer…somewhere down the line. I know that at this point that Autism is not something I will have to worry about, but for others, my heart just aches. To know that one woman who finally through medicine and miracles finally gets her wish of being a mom fufilled only to succumb to a disease with her child makes me want to turn the light off and crawl into my own sleeping bag and think about this, praying that it’s just not true.
HUG
I haven’t read the article. I don’t think I’m going to.
What bugs me about studies like this is that it’s relating the treatment of infertility to some sort of disease when it’s possible that the disease is related to the CAUSE of infertility.
Until there isn’t an “unexplained infertility” diagnosis (because seriously, unexplained? How is that a diagnosis?) then you can’t link diseases to the TREATMENT of that infertility. It’s possible that it’s a genetic issue which is a cause of both infertility AND autism. Not the medications associated with going through treatments. To that, I very much doubt the “cause” of autism as perpetrated in articles like that. How do they KNOW it’s meds? They don’t, because they don’t know the underlying reasons for the infertility in the first place.
(BTW? I often wonder the same thing about my own health. My friend S has an aggressive estrogen-based breast cancer which I’m almost certain was exacerbated by her IUI/converted IVF cycle when she overstimmed. I can’t prove it, but oh wow it silences me when I think about doing another IVF cycle.)
xoxo
I want to post something thought provoking and let you know how glad I am that you posted this but even more glad about what everyone is writing because they are making valid points…but I just keep sitting here with my jaw open. wordless.
Being a teacher and having a godson with autism, I have seen my fair share of the effects on children within the autism spectrum. They know so little about the causes…most of the research just seems like a crapshoot to me. Cynical, I know. I just keep all of the families of children with autism in my mind and close to my heart.
I just have to keep in mind that correlation does not equal causation. So, there *could* be a correlation between fertility drugs and autism, but that does not mean that fertility drugs cause autism.
There are a lot of factors out there, so I would guess that the causal possibilities are endless.
Hmmm, interesting, but really not a whole lot of concrete information there. Pretty much the same for most studies that link “autism” with so many other things. My oldest son was diagnosed with Aspergers (an autism spectrum disorder) when he was 9. He was conceived when I was only 23, and with no meds. But my two younger sons, both conceived while on Clomid and at an older age, are not on the spectrum at all. There is so much we don’t know about autism and it’s causes – so much we may never know. Maybe further research and studies will prove their theory out, and maybe it won’t. Too early to know.
The “evils” of Clom.id have LONG been documented. There is a cohesive book called “The Price of Ovulation” that details legal battles relating to the drug. I read it while trying to decide whether or not to use ovulation stimulating drugs for our IUIs, and it certainly scare the crud out of me. It bothers me that OB/GYNs pass out Clomid like candy, because people have WAY too much trust in their doctors, and in medications in general.
Basically Clom.id has a breakdown product that stays in your body for an extended period of time, which means that you, and your baby are exposed to it for a long time, too. This is usually a poor attribute for a drug.
That said, the you can’t necessarily say that Femara or the other ovulation inducers are “safer” because the simple fact is that they are newer, and thus less is known about them. (though they may be safer).
No one would argue that the best way to get pregnant is by using drugs. What you have to do is weigh the risks, and make an educated decision. No drug is 100% safe, not even Tylenol.
I wonder how accurate these studies really are, ya know? One day eggs and wine are good and one day they aren’t. I would bet autism has more to do with all the freaking chemicals in everything.
A few years ago there was a study that came out that basically said if you have a son conceived with donor sperm that you had a significantly higher chance of that son being autistic. And damn if that doesn’t make a woman pause.
I remember showing the article to some of the ladies on the IVP and I will paraphrase what the most comforting reply was : Women and couples that are intentional parents- meaning the ones buying donor sperm and/or going to fertility clinics are probably more educated. Thusly we would be more aware of signs of autism and would have a higher chance of seeking treatment.
So the increase in numbers is simply because whatever the demographic is of fertility clinic patients is going to be the demographic that seeks out a diagnosis. On the flip side there are probably just as many parents out there unaware or uneducated about autism and have children that have not been tested.
These studies just irk me more than anything because they don’t offer much other than anxiety.
The simple fact that autism is present in so many children whose parents have NOT undergone fertility treatments is enough to convince me that the treatment is not the cause. Couples dealing with infertility have enough to worry about without this being lumped on our plates. I agree with those above who have said it already – the media should not be reporting on “possibilities” like this. Isn’t the oil flooding the ocean plenty enough news right now? Sheesh.
I don’t think this has anything to do with the treatments but more so the age of the those getting the treatments (on both sides, men and women). It’s something I think should have been investigated sooner to be honest with you. I think anyone who is of “advanced maternal age” knows the risks of having a child at that age. It would be nice though if this is in fact the reason autism is on the rise.
Extremely interesting, considering Ethan is THISCLOSE to being on the autism spectrum.
That said…we have autistic children in both our families (genetics) and I am prone to a lot of his autistic-like tendancies (genetics). I am very young, which goes against ABC’s caution (and was moreso when we conceived over three years ago), though I was on drugs for quite some time (about 2 years straight, maybe 1.5 of them being injectibles).
You know, on this one I’d like to see infertility decoupled from infertility TREATMENT. I know, it’s not so easy to find children of infertile people who conceived them spontaneously…but as with so many of these studies, I’m never convinced they’re asking all the right questions. Is it the TREATMENT that we need to look to, or the condition — age, damaged eggs, anomalous sperm, whatever — that makes us turn to treatment to begin with?
The problem with all the recent studies, including the ones that linked more invasive treatments with deformities and Clomid with uterine cancer, is that it treats infertility as one diagnosis, and doesn’t make any comparison between the many, many known causes, and many, many unknown ones.
Women who spend more years undergoing treatments may themselves- or their partners- have something causing the infertility that may also have a tie-in with autism. Who knows. What about women like myself- with unexplained infertility? What about those of us who have both conceived spontaneously and with treatments? Have they compared the siblings conceived spontaneously with those conceived using treatments? No. Do women using IVF who have had tube-scarring PID but normal ovaries have similar rates of autism as women who use IVF to overcome egg-quality or sperm issues? What about the age factor?
Too many variables have NOT been looked at to get worried. Honestly, as someone whose risk of schizophrenia due to family history is far, far above average, and whose children would still have a triple-fold risk- I still chose motherhood.
Thanks for posting this, Mel.
Besides the questions/criticisms raised by other commenters, I think the problem with so much of what we deem “evidence-based medicine” is this: what’s the default (in scientific terminology, null hypothesis)? Or in this case, should we assume infertility treatment does NOT cause autism until convincing evidence is presented that it does? Or should we assume that infertility treatment DOES cause autism until convincing evidence is presented that it does not? And oh, the confounding variables for which we must control.
You’ll note that I said, “convincing evidence” and not “proof,” and what constitutes “convincing evidence” — well, there are norms within the scientific community about this, but there’s no clearcut “right” answer.
This is tough stuff. I used IVF knowing it was the only way we could conceive a child related to both of us (and more particularly to my husband, to whom that point did matter), and decided I was comfortable with it as it’s been around for a number of decades and lots of healthy children — as far as anyone can tell (yes, they have studied this, and yes, I have read up on it) — have been born through it. But at 41 I’m hoping for some “breakthrough” that would allow me to conceive again with my own eggs (a prospect that otherwise looks impossible) . And then I wonder (and by “wonder” I mean “lose sleep”) whether I could really use some “breakthrough” that by definition hasn’t been thoroughly “tested” (and by “tested” I mean “endured the trial-and-error undergone by thousands of couples and children before me and mine”) to, well, create a human being — to do such a thing without knowing (in a probabilistic sense) what the effects on that person, my child, will be.
Of course had others not been willing to take those chances, my son would not exist.
I heard this earlier today, and I still don’t know how I feel about it. With an impending IVF date (July), I’m not sure I’m in a position to feel anything about it at all to be quite honest.
Is there room in that sleeping bag?
Studies like this make me wish I had gone to grad school. I specialized in neuropsych as an undergrad, and I miss research so badly!
I want to read the actual article. The mainstream news very, very rarely gets the facts about research studies correct. Most of the time it’s just because they don’t understand the difference between correlation and causation, or because they misinterpret statistics, but oftentimes they COMPLETELY misunderstand the findings.
No researcher worth his or her salt would leave these results as-is. There would be a follow-up study with an attempt to separate out the confounding variables. We all know how many different fertility treatments there are to pursue; for even a decent quasi-experimental design to control simply for the fertility treatment variables, you’d need so many groups that you’d have trouble recruiting participants and you’d lose a good deal of your statistical power. And in the case of ASD, we simply don’t know a lot about the variables that would need to be controlled. These issues render a good study almost impossible.
As one of the commenters pointed out, IF meds could be just one cause of increased incidence of autism. A show on Discovery that I saw a long while back documented that human body was housing more than 100 chemical compounds that would not have been found in our predecessors of several generations.
All in all, are IF meds a moderating variable? Do they balloon the chances? What combination of circumstances would lead to emergence of the same?
It is scary….
I wish they would invent a magic wand that made women pregnant without any risk, any pills, any injections, any weird news like this. I hope it isn’t true.
And yet. All we can do right now is suspect and make educated guesses as to what the causes of autism and autism-spectrum disorders are.
My husband has Asperger’s Syndrome (on the autism spectrum) and his mother, sister and sister’s son all exhibit characteristics of the disorder. Neither they nor their parents were on fertility meds. No one can really tell the whys and wherefores.
I mused about this on Twitter, but I wonder… when IF parents are already so tuned into their own health and the conception and gestation of their children, I can’t help but think perhaps too, they are just as intimately and more closely tuned in to their young child’s development as well. When parents have literally sacrificed everything to conceive their child via ART, I just think that they would also be the first to question “What’s wrong with my child?” when they aren’t lining up with their peers developmentally. We’re worriers, and we’re going to notice even the littlest things that don’t add up right. I also honestly believe that the increase in children born via ART also accounts for this growing wave of helicopter parents. It’s a personal theory I have, but I tell you, as someone who works in higher ed/residential life – you see it a lot. Great article, Mel. Thanks for posting.
I know what you mean.
But I hope you are busy telling yourself that this is a) only a single paper and b) is not even published and c) at best makes a very broad statement about correlation (rather than a causal link) between two things. And even then, the risks are not that great. So we are a long way from needing to panic, no matter how the journalists try to spin it.
Bea
I agree with nearly everyone that correlation is not causation, far from it, and yet I know the feeling you have described — the bottom of the sleeping bag. In a couple of weeks N. has a physical therapy evaluation because of her preference for toe-walking, which is very common among toddlers, but the pediatrician wants her to be evaluated anyway. While Dr. Googling this, I found that it could be a sign of cerebral palsy, which is more common in twins and was listed as a possible risk on my IVF waiver; it could also be a sign of autism. And even though it’s very likely just a stage, even though N. has no other signs of either condition, I feel rather troubled, much like when I found a lump in my breast last year. Are my children red-flagged because they are twins and red-flagged again because of how they were conceived?
“I wish they would invent a magic wand that made women pregnant without any risk, any pills, any injections …”
@Terry Elisabeth I know that here in the IF world such things aren’t funny but really this sounds like the perfect set up line for a dirty joke. You know, “A fertile guy walks into a bar …” Except for everyone but us, it wouldn’t be necessary to use the qualifier (“fertile”)
When it comes down to it, there is not really any good information yet on what ASD’s are, only what they looks like. We know some things, like, it can run in a family – but not always, it can be linked to certain chromosome defects – but not always…….. and this study certainly wouldn’t add much to us understanding the condition itself, because obviously there are people with autism not conceived through ART.
Still – hearing this does make me worry. I know I could cope and love a child with disability but i just don’t trust the rest of the world to do that too.
I’ve taken a lot of fertility drugs and just have a feeling that maybe I’ve pushed too hard. Maybe I should just listen to the universe……
I am a late commenter, but interested in this topic because I have a son with autism. Of course everyone wants a healthy and developmentally typical child, but know that if you do conceive a child with autism, you will love that child and adore him as much as if he were a typical kid. I’m not suggesting that it’s something you would choose for your child, but I am suggesting that it’s not the terrifying evil that so many people assume. Hang in there, ladies.
I have been studying fertility drugs for over 30 years and would like to share the results of that research. On May 20, 2010, researchers from the Harvard School of Public Health presented their findings from a study exploring the possible relationship between the use of fertility drugs and autism spectrum disorder (ASD). The scientists reported to attendees at the International Meeting for Autism Research in Philadelphia that women who used fertility drugs to get pregnant had almost double the risk of having a child with ASD verses nonusers. The drugs studied included Clomid (clomiphene citrate) and Pergonal (gonadotropin).
This recent study is part of a growing body of research that strengthens the argument that Clomid and other fertility drugs are a cause of ASD via their ability to deny cholesterol to a developing embryo shortly after conception. About 58% of ASD children have low total cholesterol (<160 mg/dL) and about 19% have extremely low total cholesterol (<100 mg/dL). The average level for children is 165 mg/dL. It has also been observed that a high percentage of children (71-86%) born with Smith-Lemli-Opitz syndrome (SLOS), in addition to a wide array of birth defects are also born with ASD. Infants with SLOS are born with a defective enzyme that impairs the body’s ability to convert a precursor (7-dehydrocholesterol) to cholesterol. Cholesterol is essential for growth of the myelin membranes that cover the brain and abnormalities in the myelin sheath are believed to be a contributing cause of ASD. Many experts thus believe that low cholesterol during early embryonic development is one of the causes of ASD.
Clomid has a long half-life and is present during the embryonic period (first 8 weeks) even when taken before conception. Studies have shown it to be biologically active for up to 54 days after ingestion and that it can accumulate over successive cycles of treatment. In the Harvard study they found that the longer the use of fertility drugs, the higher the risk of developing ASD. A critically important fact – and one not known by most physicians prescribing the drug – is that Clomid is a cholesterol inhibitor and impairs its production by acting upon enzymes in the body similar to Lipitor and other statin drugs. Its chemical structure is also similar to the cholesterol-reducing drug, Triparanol, which was briefly available during the 1960s. Animal studies have shown that Clomid and Triparanol both act on the same enzyme and affect developing organs in a similar way, with Triparanol being slightly more potent.
Pergonal (also known as human menopausal gonadotropin or hMG) likewise reduces cholesterol, but by way of a different mechanism. Namely, it suppresses cholesterol levels in early pregnancy via its ability to elevate estrogen production. Studies have established that following hyperstimulation of the ovaries by Pergonal, the resulting elevated estrogen during the luteal (post-ovulation) phase of the cycle suppresses the level of total cholesterol. In fact, there is an inverse correlation between concentrations of estrogen and the level of total cholesterol – the higher the level of estrogen, the lower the concentration of total cholesterol.
The GOOD NEWS is that many ASD children with low cholesterol, treated with cholesterol supplementation, have shown dramatic improvement. Scientists at Johns Hopkins University Medical Center, led by Dr. Richard Kelley, have shown such treatment resulting in improved mobility, verbalization, growth, behavior, sociability and alertness. More importantly, once we have a full understanding about a cause of ASD, we will be in a position to eliminate that cause and reduce the number of families impacted by this tragic abnormality.
I have a clomid baby (toddler), after 3 years of fertility treatments. I am still in my 20’s so am certainly not old. My son has autism. 2 friends (in different countries) had babies at the same time using clomid… and they have autism as well. It sort of hit me tonight that it couldn’t be a coincidence… so I googled and found your post. Thanks! 🙂