Autism and maternal self-blame


I’m currently reading a widely praised book on raising children who are very different from their parents. The book is Far From the Tree: Parents, Children and the Search for Identity by Andrew Solomon. It’s about one of the most challenging aspects of parenting, recognizing that your child is not you and that’s okay. The task is made far more difficult when the child differs from you in major ways: children who are deaf, autistic, transgender, etc.

One aspect common to parenting children with major differences is self-blame, at least in the early stages.

Solomon writes:

…The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies. Unfortunately, it does not save anyone’s children; it only destroys some people’s parents, who either crumble under the strain of undue censure or rush to blame themselves before anyone else has time to accuse them… Many parents … organize their guilt around some fictitious misstep. I had lunch one afternoon with a highly educated activist whose son suffers from severe autism. “It’s because I went skiing while I was pregnant,” she said to me. “The altitude isn’t good for the developing child.” I felt so sad hearing this. The roots of autism are confusing, and there are questions as to what may dispose children toward the condition, but altitude is not on the list. This intelligent woman had so assimilated a narrative of self-blame that she didn’t know that it had come out of her imagination.

It is quite startlingly how desperately parents, particularly mothers, try to blame themselves for their child’s autism. How I Gave My Son Autism is a horrifying example of this narrative of maternal self blame.

I am admitting here for all the world to see: I gave my son Autism. I did it. Me. And no one can ever take that away.

So . . . how did I give my son autism? I wish I could say it was one thing – one thing that I could take back that would make things neat and easy, but it wasn’t. It was mistake after mistake, assault after assault. The following are the biggest mistakes I made to which I attribute my son’s descent into autism…

The list of the mother’s supposed transgressions is mind boggling:

  • Ultrasound
  • High fructose corn syrup
  • Tylenol
  • Pitocin
  • C-section
  • Antibiotics
  • Vaccines
  • Flouride

For example:

I had at least five while I was pregnant. I was assured that they were completely safe. Heck, you can get them in malls, so I assumed they were pretty benign. Wrong! While I didn’t get ultrasounds in malls, I didn’t research them either. Ultrasounds have, in fact, been implicated in autism among other neurological disorders…

No it hasn’t. There is no scientific evidence for ANY of the supposed transgressions on this list as a cause of autism, but then there is no evidence that altitude is a cause of autism, either, yet that didn’t stop the mother in Solomon’s example from invoking it.

The mother declares:

I am already anticipating three different responses to this post:

Response 1) There will be people who read this and think, “Good grief, woman. How stupid can you be? What you did borders on child abuse. OF COURSE your child has Autism.” And to that, I have no argument. You are absolutely right. And good for you for knowing better than I did.

Response 2) Some of you will read this and know exactly how I feel because your story is very similar. To all of you, you have my deepest, heartfelt sympathy. While we will always have our mistakes to live with, the best thing we can do now is to share our truth and our story to help others.

Response 3) There will be people who feel pity for me because I have not been able to make peace with myself for my role in my son’s health crisis. You will feel compelled to reach out to me with kind messages imploring me to forgive myself. Please . . . don’t. It won’t do any good. I am not fishing for forgiveness, and while I know you mean well, it won’t help me… No child should have to endure what mine has endured. No mother should ever have to experience the kind of torturous guilt I live with every day.

This is the flip side of magical thinking so integral to natural childbirth, attachment parenting and vaccine rejection. If what you think and do has the power to keep your child safe, it follows that if your child has an affliction, it must be your fault. Indeed it is easier for mothers to blame themselves than to acknowledge the frightening reality; autism is basically random, due to genetics and can’t be prevented.

Apparently it is better to be powerful and wrong than to be utterly powerless in controlling our children’s destinies.

  • Lombardi

    I have no idea where the child in this post is on the spectrum but if he is on the mild or moderate end I have so much pity for him. I feel so sorry for this women’s child and the kids of those who posted in the comments section. I imagine that most are not getting the cognitive and behavioral therapies that have been shown to be helpful in teaching Autistic children how to address the world and communicate with others. Autism is not just a developmental disorder it id a fundamental aspect of a person personality as well. Can you imagine growing up in a house where you are mom’s number one mistake in life and she is constantly trying to fix or cure you!

    • Ellen

      This. Both of my children have ASD. They are wonderful, just as they are, and although it makes parenting them much more of a challenge, I would not change them if I could. Autism is not a tragedy.

  • Dyke by choice

    Transgender kids are not radically different from their parents. Transgenderism would not exist without patriarchally enforced gender roles. Gender is what behaviors are forced on you and socialized into you because of your birth sex.

  • Ducky7

    Thinking Mom’s Revolution is more like Society of Tin-Foil-Hat Wearers… I posted a somewhat compassionate, well-reasoned comment arguing that the poster should not blame herself for her son’s autism, and it was not posted. Since I’ve posted, the following comment was let through. It was literally written by someone who confessed **in the comment** to recently having been released from a mental ward (I’m serious!):

    “You have hit the nail on the head, many of us have given our children Autism. Unfortunately, children suffer because of their parents sin. Each time we have our children vaccinated, give them chemical-ladened food, plonk them infront of the tv for hours at a time, ignore them and reject them in other ways, they suffer. I have a 10 year old with Autism, and I know it is my fault.”

    I think the biggest thing at issue here is trust. Is it even possible to gain the trust of these people? Or, more importantly, keep/gain the trust of the people on the fence who they may be swaying with their nonsense?

  • lilady R.N.

    Thinking Moms Revolution? They are anti-vaccine and anti-science self-styled “warrior moms”, who are all affiliated with Age of Autism, Generation Rescue and other crank groups.

    They indulge in online “pity parties” and view themselves as martyrs because they have a special needs child. They refer to their children as “vaccine damaged” and “train wrecks” and many of them have subjected their children to “biomedical treatments”, such as industrial bleach enemas, chelation, chemical castration and intrathecal IV stem cell treatments at filthy, unregulated off-shore clinics.

  • anonymous

    Lots of references to…there goes any vestiges of credibility

  • Ducky7

    I wrote an extensive and respectful comment on her blog, but it was not posted. I also calculated that a 140-lb woman would need to drink ~3700 cans of 12-oz Coca Cola PER DAY to achieve the blood levels of mercury shown to impact children neurologically. Lab studies have shown that oatmeal and nutrigrain contain upwards of 3x the amount of mercury that Coke does. You get WAY more mercury exposure from one weekly serving of fish.

    I don’t understand it fully but there is something really interesting going on cognitively with all these people who believe their child’s autism could be prevented. Perhaps it allows people to live vicariously through the fantasy that they will help others; perhaps it gives them a space to play out the thought: “If only I could have done something”?

    By the by I really, really appreciated this post. My twin brother is autistic and he and my parents have had a very difficult time of it in the last five years. My mom asked for “Far From the Tree” for Christmas last year. Parents need that message I think.

    To me more than anyone else it’s apparent that autism has a strong genetic component and that in normal cases it’s almost absurd to take credit for “giving” your child autism. My brother and I shared the same womb, birth (by c-section- has it ever occurred to anyone there might be a correlation between c-sections and autism because autistic infants are more prone to distress?), medical treatments, food, and environment for at least our first two years, and we could not be more different. It’s not scientific evidence but I hope it might help someone without any scientific instincts to understand how absurd it is to draw a causal link between one’s own actions and their child’s autism.

    I would agree with them on some points and I’m interested in diversity of perspective like the next person but the censoring of comments is a clear sign that these people are afraid of scientific debate.

  • Carrie C

    I’m sorry, but this woman’s attitude is CRAZY, and just about every comment on her post is, too! They’re all resigned to the “fact” that these HARMLESS things cause autism! It’s maddening to see people like this! She really needs to change her perspective, because it’s not good for her kids to grow up seeing that kind of behavior, blaming herself for something she had NO control over, and constantly looking for control over things she simply could never have control over. I know that autism is a rough thing for a parent to deal with — just as any illness or disability in a child is difficult for the parent. I know parents of children with neural tube defects often blame themselves for not taking folic acid when they should have. It may have helped, but there’s no guarantee it would have changed anything, and they should not blame themselves. But this woman, blaming herself for something that categorically has NOTHING to do with causing her child’s autism?! That’s craziness! That’s grasping at straws! That shows she hasn’t properly grieved! That shows she needs some counseling! That shows … just how sad it is. :( I feel very sorry for her.

  • HM

    Thanks for posting this! My brother is a heroin addict, and my mom beats herself up for it. Every time I talk to her, she says, “Maybe I shouldn’t have done this. I should have done x instead. When this happened, I should have done that” about everything she can think of. I’m emailing her the title of this book!

    • KarenJJ

      That is hard. My neighbour had one son that is/was a heroin addict and basically unable to function in society (hold down a job, live away from home, apply for unemployment benefits) and one daughter that was happily married to a nice, hard working guy and had three little kids. I’ve no idea how it happens like this. Apparently he was a really nice kid that feel in with a bad crowd. I also wonder if he is self-medicating somehow? But I’ve no idea and it’s not really my business.

  • Lynnie

    If ultrasound contributed to autism, my niece should be autistic. She’s not. My sister had an ultrasound pretty much every day for her last 6 weeks of pregnancy. My niece had heart problems before she was born and she was pumped up on all sorts of medications before and after birth. Her heart beat way too fast and they had to give her digitalis (I think) to slow her heart down to keep her from having cardiac arrest. The doctors were actually concerned that all the medications that she had to take when she was a baby and all the medications my sister had to take while pregnant to slow the baby’s heart rate. She has had NO negative affects neurologically. She is a thin little girl, but that might have to do with the fact that she never stops moving for a second.

    I read the linked article and one of the commenters was saying that dopplers and bad as well. Well, if it wasn’t for dopplers and ultrasounds, my niece would have probably died before she was born and we would have missed out on a great joy in our lives.

    The fact is, they don’t really KNOW what causes autism. (My own personal theory is that it’s largely genetic.) My brother is diagnosed as mildly autistic. My father and nephew both have autistic tendencies while not being officially diagnosed. 3 different women, 3 people with either autism or autistic tendencies. They were all raised a little differently, There isn’t really any strong similarities between them all, except for a genetic link. Well, both my brother and my nephew were induced with Pitocin, but my son and my niece were as well and no autism there.

    Personally, I think the autism and [insert blame here] is too convenient. Ultrasound-well, the vast majority of women have had ultrasounds. Pitocin-um, if the NCB proponents are right, a majority of women use Pitocin as well, The same for pretty much everything they blame autism on. The practices they vilify, a large majority of pregnant women and babies have done. So, obviously a large amount of autistic people have experienced many of these “risk factors”.

    Well, I am beginning to ramble. The whole blame game for autism is a heated topic for me for some reason. I guess it’s because my mom actually blamed herself and her induction with my brother on his autism. I will stop rambling now. ;)

    • Isramommy

      Just to add another anecdote- if ultrasounds caused autism, my daughter would be screwed. She had a mild brain abnormality detected at our 20-ish week anatomy scan. As a result, I needed high resolution level two ultrasounds focused directly on her brain every two weeks until delivery in order to monitor the dilation of her lateral ventricles. Plus we had a fetal MRI of her brain (according to these people that has to be bad, right?) We also had several fetal/neonatal neurology consults which, guess what, also involved ultrasounds of her brain. Oh, and ultrasounds through her soft spot at birth and at 3 months also.

      Thank God, she is a totally normal, healthy two-and-a-half year old. She has no neurological issues, either from her ventriculomegaly, or all those ultrasounds. The fact that this woman has such guilt about routine ultrasounds is very sad. The fact that she is encouraging other women to forgo important diagnostic tests is infuriating.

  • yentavegan

    Meanwhile, here in New York, 3 weeks have passed since 14 year old Avonte Oquendo walked out of his school without the security personnel even trying to stop him. This teen ager is autistic and has no communication skills. It is now bitterly cold at night and I get really bad vibes concerning the outcome of this situation.

    • Young CC Prof

      Yeah, I’ve been following that story, and it’s pretty bad.

  • SkepticalGuest

    So glad you’re reading Andrew Solomon’s book. I thoroughly adored it.

    The whole culture–not just attachment parenting–tells us that IT’S ALL MOM’S FAULT.

    Seriously, I have a child with food allergies (celiac) and I can’t tell you how many “explanations” I’ve heard for why food allergies are on the rise: mom didn’t breastfeed, or didn’t breastfeed exclusively or for long enough; mom introduced solids (and/or the allergen) too early or too late; mom kept her houses too clean; mom did IVF; mom had a c-sections; mom is making it up/exaggerating/following a trend, etc.

    But ultimately, it’s all the same: whatever is wrong with the child (food allergies, autism) is ALL MOM’S FAULT.

    I’ve thought about it a lot, and I’ve concluded that people are looking for boogey-moms to blame so they can either a) feel smug that it’s their spectucular parenting that kept their kid safe; or b) feel that this can’t happen to future children.

    Really, all the APers are doing is extending the blame to how mom gave birth. There is plenty of crazy in the non-AP community when it comes to blaming the moms of kids with food allergies. They just don’t blame vaccines or lack of natural childbirth.

    • Young CC Prof

      Very good summation of the problem: Society tells us that whatever about your child is less than perfect, it’s ALL YOUR FAULT.

      Every time I hear someone say “ADHD=Bad parenting” I get angry on my own parents’ behalf. Sorry, self-righteous parent blamers, the hand of fate gave me ADHD. My parents gave me coping skills, with no support from society at large, after a succession of therapists and an actual child psychiatrist failed to diagnose or treat me.

      • KarenJJ

        And on the other side, if you do something right you are such a good parent. I’m still cautious with one of my parents due to a tendency to get overly excited about any achievements and brag about how it was due to ‘such and such’ a decision that was apparently made by themselves during my childhood. Also thinks my kid spoke so clearly while young because I spoke to her a lot. Nope – it was just how she was. The next one is more of a mumbler.

        • Bombshellrisa

          Seriously-I thought I was the only one. My mother accepts the praise for everything “right” that I have done because she is sure it was “taking her prenatal vitamins”, “laying on her left side only” and being “very careful” during her pregnancy with me. She also feels that being a helicopter parent is something she (and my father ) must continue being even now when I am 34 years old. It’s hard to explain to a parent why they aren’t invited to MY OB appointment. My father doesn’t understand why I don’t want him there, after all, my pregnancy is a “special time FOR HIM” and he and my mother feel that they can contribute something to the discussion since they are my parents.

          • Elizabeth A

            There is a vague logic, with babies, to attributing goodness or badness with parental action, but it’s not that the actions were actually logically related.

            As far as I can tell, a “bad” or “misbehaving” baby (air quotes used advisedly) is any baby that fusses. A “good” baby is a baby that coos and smiles. The very best of all babies is any infant that is currently asleep. Of course, a parent has very little control over these things, they change from moment to moment, and they bear no relation to the personality or intentions of the infant. The vague logic I referred to is that as long as we’re inventing judgments out of air, parents feel justified in getting some benefit out of that.

            I don’t say this to defend your parents. At some point you have to give up the fantasy that the way your kids turn out is entirely down to you.

          • KarenJJ

            “At some point you have to give up the fantasy that the way your kids turn out is entirely down to you.”

            Problem is when they don’t. The achievements of a young adult should be something they can own themselves without also trying to gain reflected glory based on your decisions in their early life. I’m grateful for the options I have had and the support I’ve received, but there is a level where it is OK and a level where it isn’t. It comes down to where a young adult’s identity lies and the fact that it should be their identity, not the parents, if that makes sense?

          • Elizabeth A

            I think we agree. There’s a point at which, if you want a real relationship with your adult offspring, you have to acknowledge your child’s effort and accomplishments without trying to own those things.

          • EmbraceYourInnerCrone

            This, if you can you try to give them some tools to deal with what life throws at them. How they deal is largely up to them. My kids grades in school were largely up to her. I could help by giving her a quiet place to study and maybe getting a tutor something if she wasn’t getting something. Or maybe being an advocate if she needed extra help that she wasn’t getting. But her success is hers. But so were her failures if she was choosing not to do her homework or study for a test.

          • Bombshellrisa

            Oh, I don’t mind that she thought that about whatever I did as a baby : ) it just irks me that she still sees those things as the reasons why I have done things well NOW. My being able to learn Quickbooks now or throw a great party or anything else I do has very little to do with her taking her prenatal vitamins and laying on her left side during pregnancy (but she would argue otherwise)

          • AmyP

            That’s funny.

            I think I am responsible for my older children’s amazing spatial skills, but that my contribution there was 95% choosing their father.

            I am very smug about that particular choice, but it’s not nice to brag in real life.

    • Jennifer2

      Well then, the solution to all that ails our society must be for gay (male) couples to adopt all the babies.

      • Certified Hamster Midwife

        Doesn’t work unless we start growing babies in jars. There’s always a bio-mom to blame.

        • Jennifer2

          Let’s get crackin’ on that then. If we can put a man on the moon, we can grow some jar babies and adopt them out to gay couples.

        • Young CC Prof

          A year or so ago, my father’s younger co-worker was in the process of a planned newborn adoption, along with his partner. One day at work, the phone rings, young man answers.

          “Her water broke? Really?” Then he turns to my father. “Her water broke. What does that mean?”

          My father, admirably, did not laugh at his ignorance of all things female, just told him to get moving and prepare for parenthood within 24 hours.

    • Olga Mecking

      Yes! A million times yes! I adore books but stopped reading parenting books because they were all: “You’re doing it wrong”. “It’s all your fault”. My first child was a late talker: my fault because I didn’t talk to her enough. My second child was a late walker: my fault because I didn’t exercise with her enough. Or something. Let’s see how my son will tunr out and if he is late to do something, it’s probably my fault, too!

      • SkepticalGuest

        I am SO with you on this. Whether it is sleep or potty training or anything else, I couldn’t read any parenting books about the topic. Not matter where they were on the parenting spectrum (from AP to ultra-conservative) and no matter what they recommended (from almost exactly what I was doing to the polar opposite), the ultimate message was the same:

        “If you don’t do it exactly as I say, you’re going to screw your child up for life. And if my method doesn’t work for you, it’s because you’re a bad mom.”

    • Mel

      My husband and I were both breast-fed and he grew up on a farm surrounded by animals. Under the laws of comic correlation, we should be skinny and asthma/allergy/eczema-free. Too bad we never got the memo. We both struggle with obesity, my husband has severe allergies and asthma and I’m coating my hands in steroid lotion to control my second outbreak of dyhydriotic eczema since July.

      • GuestB

        My daughter has this on her feet. It itches like crazy, and the steroid cream doesn’t really help. If you have any tips for management I’d love to hear them.

        (Sorry this is so OT)

        • anna

          ive had it…. barrier cream and willpower not to scratch sorry :( it was SO itchy i scratched myself raw and bleedign and hen got serious infections. a slimy/greasy barrier cream helped a bit, i would put steroid on first and then the cream… just gott try and stick it out for a week or two of the cream without scratching and then it should fade away a little

        • Mel

          A friend of mine used photo therapy for worse dyhydriotic eczema. We both had good insurance through our work and his doctor was willing to go through the paper work/treatment logs needed to get permission to essentially write prescriptions for using a sun-tanning bed.

        • me

          I’ve suffered with that on my hands (and when I was younger, my feet) for years. I also found steroid creams didn’t help much, and as soon as you stop them, it comes right back. I recently cut most grains and starches out of my diet (mostly for weight loss purposes) and found that within a few weeks my eczema just cleared up (hurray!!). You may want to try eliminating wheat from her diet (as it seems a lot of people have sensitivities to gluten) and see if that helps. For me it only took about 2-3 weeks to see dramatic improvement. Also try adding more saturated fat to her diet (our cell membranes are comprised of saturated fat, we need it for their structural integrity). Coconut oil, palm oil, butter, and lard are wonderful sources and easily replace vegetable oils in anything you cook. I don’t know which thing helped me (cutting carbs or increasing good fats), but you could certainly try it and see if it helps!

          • Young CC Prof

            You know, mine got way better when I cut out all raw plant foods. Turned out I actually had really bad oral allergy syndrome, bad enough it was manifesting on my skin. (OAS is pretty rare in children, though.)

          • me

            I will say that I don’t know exactly what aspect of my diet helped, all I know is that I no longer even need lotion :) I went from the conventional wisdom diet (low fat, lots of whole grains, lots of fruit and veggies, lean meat, low fat/fat free dairy) to a low carb, high fat diet (lots of non-starchy veg, lots of fattier meats (well marbled steak, dark meat chicken, oily fish, etc), lots of eggs (eat those yolks), avocados, nuts and seeds, full fat dairy in moderation, low sugar fruits in moderation, and minimal grains/starchy veggies (1 serving or less per day), and also eliminated vegetable oils (with the exception of olive oil) and replaced them with the fats I mentioned above).

            I lost a lot of weight, yes, but the disappearance of my eczema was simply amazing. I went from cycling between itchy, liquid filled blisters (oh my god, that level of itching is c.r.a.z.y.) and cracked, bleeding skin, to clear, normal skin in just a couple of weeks. My mom thinks it’s the additional saturated fat, my husband thinks I might have a gluten sensitivity. I don’t really care what it was, lol, I just know I’ll never go back to my old way of eating again.

            I don’t know how old GuestB’s daughter is, and a radical change in diet can present challenges in kids, but making a few simple switches might give insight as to whether dietary factors are causing the eczema. It can’t hurt to try, you know?

        • fiftyfifty1

          Dyshidrotic eczema tips:
          1. Identify triggers: Common triggers include mechanical sources (e.g getting an outbreak after clapping at a concert or after a road trip where the hands contacted the steering wheel), changes in pH (e.g. contact with lemon or tomato juice.) Another overlooked trigger is the fungus of athlete’s foot. Even mild tinea pedis (mild peeling skin between the toes or a little dry/flaky look to the foot skin) can trigger an outbreak and the outbreak will often occur on BOTH the hands and the feet even though the fungus is only infecting the feet. Treat the fungus with OTC tinactin foot spray and you can really help the problem.
          2. Use steroids effectively. Don’t waste your time on weak steroids. Adults will need clobetasol, halobetasol or betamethasone dipropionate. A child’s thinner skin may respond to triamcinolone 0.1% ointment. Always use the ointment (grease) form, never the cream form. Ointments penetrate much better than creams and don’t contain potentially irritating preservatives.
          3. Manage the itch: itch is worse at night. Use a sedating antihistamine like Benadryl. Don’t use it during the day (too sedating). Never use topical Benadryl preparations: they can cause allergic reactions.
          4. Treat early. Easier to nip it in the bud.
          5. DE has a big genetic component but what the genes are have not yet been identified. Spontaneous remissions are common. It may clear up suddenly on its own and not bother you for years and then relapse and be a real stinker for a few years. This part is still a mystery.
          6. Watch for signs of superinfection. Agent is almost always Staph aureus. Look for the golden colored pus. Seldom will need oral antibiotics, just drainage or the infected blisters and topicals (try bacitracin first not triple antibiotic). Soaking hands in a very very weak bleach solution can help and surprisingly almost never makes the eczema worse. If you do need an oral antibiotic, make sure to cover for MRSA, and remember no doxycycline etc in those who haven’t yet formed all adult enamel (under age 9).
          …see, the crap that clogs doctors’ brains. With all this minutiae, no wonder we don’t have room for a sense of humor.

          • GuestB

            Thanks for the tips! My daughter has seen 2 dermatologists, and both have said dishydrotic eczema – but neither one has done the test (is it KOH?) for athletes foot. Is this a test we should insist on? Her feet are so raw and cracked and they look awful. And we have cream, not ointment. Should we insist on a new script, too? Thanks in advance, and sorry to hijack the comments.

          • fiftyfifty1

            I would ask for ointment not cream, it really is more effective. But patients tend to complain about it because it’s greasy, so some derms seemingly have given up and go for the creams first. I personally don’t do the KOH test in these cases because the test can miss a mild case. I just go by clinical judgement: if it looks like it could have tinea pedis, or if nothing else is working, I treat for fungus.

          • GuestB

            That makes me feel better. Everything I read on the internet (I know! I know!) said you have to do the KOH test to r/o athletes foot. I figured if two dermatologists didn’t bother with it, then it really wasn’t necessary, but it was still nagging at me. Your input is very helpful. Thanks so much.

          • KarenJJ

            Some of this was exactly the sort of advice we got from the paediatric dermatologist my daughter saw for her eczema at 18 months. Basically it was “go hard and go early” – use the strong stuff early enough and you’ll use much less steroid ointment in the long run and she’ll feel a lot more comfortable. She was also a fan of us using ointment over cream.

    • Sguest

      Well, I DEFINITELY couldn’t be accused of keeping my house too clean. Phew! Must be the perfect parent, must start a blog about how awesome I am………

      • araikwao

        Ha ha, me too! I keep telling myself that the hygiene hypothesis hasn’t been rejected yet, so I am *protecting* my kids by avoiding housework.

    • me

      This post is timely for me. My oldest suffers selective mutism (she has still never spoken to anyone at school, teachers or peers, and we’re midway through first grade, into our second year of therapy and recently started medication). I did, and often still do, blame myself for her disorder. I know it’s not rational, and fortunately I have two other children who don’t have the anxiety issues my oldest has, and since I know I didn’t do anything significantly different with them, I can take solace in the idea that I didn’t cause her issues. But it’s still hard not to engage in self-blame (was it the induction, the epidural, did I bf her too long, not long enough, was it the frequent moving, the choice to be a SAHM, and on and on and on).

      It is human nature to try to explain the unexplainable. And it is the nature of parents to blame themselves for their children’s imperfections. I’m still struggling to come to terms with the idea that I may not be able to “fix” this, and this may be something she suffers with into adulthood. It’s sad and depressing and scary as hell, and so of course it’s easy to blame oneself. Before it’s over I’ll probably be the one in counseling and on meds….

      But Dr Amy is right, thinking we have control over these things is a prettier picture than the ugly truth that bad things happen to good people, often randomly.

  • The Computer Ate My Nym

    So I have another question: I’m probably autistic/asperger’s. My daughter is floridly neurotypical. Makes friends at the playground, socializes with kids when she doesn’t even speak the same language, the whole thing. I’m worried. I’ve heard that neurotypicals have terrible trouble resisting peer pressure and am concerned about her. How could this have happened*? Did I not have enough ultrasounds during pregnancy or not drink enough high fructose corn syrup drinks?

    BTW, yes, I’m being sarcastic but I do have real concerns about how I’m going to help her through adolescence when the challenges she faces are likely to be so different from mine…

    *Actual answer: recessive genes and partner who is not autistic, not even a little bit.

    • The Computer Ate My Nym

      Come to think of it, I did Every Last One of the things on the list of things that will make your child autistic when I was pregnant or delivering. Except maybe Tylenol and I did that while breast feeding. She’s still neurotypical. Almost as though the claims about ultrasounds, tylenol, etc were nonsense*.

      *Not, of course, that my anecdote proves anything.

      • Lisa from NY

        Good luck to you. I am sure you are a great mother and your fears are probably unfounded.

        • Antigonos CNM

          There’s a part of me which wonders whatever happened to individuality. Too many people — and especially nowadays, children — are overdiagnosed, IMO.

          Where children are concerned, it’s similar to the “there’s an app for that” syndrome with iPads and smartphones. Jiggles his leg, never sits still, seems rather scatterbrained? He must have X syndrome; there’s a med to make him “more normal”, and he probably got that way because he was exposed in utero to something deemed pernicious. What’s wrong with being always on the go, and having a short attention span anyway? [today, my son who has all these characteristics is a very successful businessman, these same traits inspiring him to be a go-getter and to think outside the box]. There was a time when a certain amount of oddity or eccentricity was not given a diagnosis that required treatment. When one reads biographies of high achievers, how often does it seem that their very success comes from NOT being “average”?

          The definition of autism and the “autism spectrum” seems to be constantly expanding and I question its validity. This is not to say that autism doesn’t exist, and can be profoundly disabling. But labeling just about everyone as having some form of “problem” is a problem in itself.

          • Anj Fabian

            If it makes you feel any better, IEPs don’t care that much about the “diagnosis” as much as they do about measurable deficits.

            IEPs are evidence based. You might quibble about what they are measuring and how they are measuring, but data is collected and evaluated in an objective way. (Ignoring politics and funding problems..)

            The IEP attempts to address those deficits, no matter if the child is autistic, AD/HD, DS, or some rare known genetic condition. As long as children in need get the services to help them, I don’t care if they have a diagnosis or not.

          • Lisa Cybergirl

            I was very glad to finally be diagnosed with Aspergers and ADHD at age 49 (girls didn’t GET those when I was a kid; I was just creepy). My ADHD support group has given me so many tips and tricks for getting through life! I only wish I’d known a long time ago, I’d probably have a decent job by now.

          • Young CC Prof

            Yeah, girls didn’t get those in the 80’s, either. Being finally diagnosed at 19 made a huge difference in my life, just understanding myself better.

      • GiddyUpGo123

        Here’s another anecdote, I *did* actually do all of the things on that list, except with first two pregnancies it was pitocin, not c-sections and with the second two it was c-sections, not pitocin. And none of my children have autism.

      • carr528

        I had four pregnancies which were all pretty much the same. Ultrasounds, caffeine – one cup of coffee a day, tylenol, probably had some HFCS, c-sections with all four, vaccinated all four on schedule, etc. My second son has ADHD and is probably on the spectrum, while the other three are neurotypical. My third son WAS born with craniosynostosis, so I’m sure I caused that. (Darn hair dye!)

        It’s just proof that there’s NO one explanation for ASD. And for a mom to beat herself up because of it is ridiculous.

    • auntbea

      I’m neurotypical, but I went to a science and engineering magnet that attracted a lot of people on the spectrum, strong introverts (me!) and then just a lot of generally quirky people (also me). I loved it. My daughter is clearly an extrovert and very socially adept even though she’s only 19 months. I just don’t know what I’m going to do.

  • MichelleJo

    I could easily be eating myself up with guilt. I have an autistic
    daughter, and the things I did in pregnancy were far more sinful than
    having flouride and ultrasounds. I took category C drugs in early
    pregnancy, I was artificially induced three weeks early and the baby
    took her time to get breathing.These were both things that I could have
    not done. The point is that whenever a decision has to be made, when
    doing nothing is also a risk, it is always weighed up in a cost versus
    benefit way. You can’t do more or better than that,*even if that choice
    could end up doing harm*. Autism is probably random anyway, but what if it’s not?There is a *chance* that my choices caused her
    autism. But do I feel guilty? Have a ever even thought of being guilty? Not for a second. We are not prophets, we
    are human beings, and can only know, and make decisionsbased on, what is in
    our capacity to know. It’s like someone feeling guilty when their safely
    strapped in child is killed in a car crash where the driver was
    blameless. Oh if ONLY I hadn’t taken her with me that day, she would
    still be alive. I murdered by daughter!

    • Lisa from NY

      But there is more research pointing to genetic tendencies. I have a friend who works in a special school, and she says she sees lots of first cousins with it.

      • Young CC Prof

        I seem to recall an identical twin vs fraternal twin study. Don’t remember the exact numbers, but with identical twins it was much more likely that both would be autistic, while the numbers for fraternal twins weren’t terribly higher than for non-twin siblings.

        • Amy M

          That’s usually the case when something is genetically linked/heritable. The fraternals, like any sibling pair share 50% of their genes. The identicals share 100% (not counting epigenetics and stuff like that).

        • The Bofa on the Sofa

          The dumb thing is that the autism woo crowd has tried to jump on that study as proving that autism is NOT genetic, because, you know, the incidence in the identical twins was not 100%. Since they share 100% of genes, that means that it must not be genetic. Get it?

          One criticism I heard of those claims was from L&D nurse, who noted that she has seen identical twin babies, where one had curly hair and the other had straight hair. Does that mean hair style is not genetic? Of course not. It just means that genetics is not as trivial as “gene for” or “gene against.”

          People who study this issue are well aware of the subtlety. Autism woos have no concept of such.

          • Young CC Prof

            Right, and my oldest brother-in-law who was born during famine in a foreign country is 4 inches shorter than my husband or the other brother, so clearly height isn’t genetic either. *facepalm*

          • Amy M

            Yes, and I wouldn’t be shocked if [autism] was some combination of environmental factors plus genetic tendency. Even in utero, identical twins environment is not exactly the same–they are not attached to the placenta in the same place, they do not necessarily get the same amount of nutrients, TTTS might be an issue, etc. Subtle environmental differences may make big differences in terms of gene expression, methylation, and other things on the molecular level. There are clear examples of this sort of thing–there have been studies done on sets of identical twins where one is gay and one is not. I even know a set like that. One of my (ID) twins is a leftie, the other is not, but they do not appear to be mirror-image twins either.

  • Alenushka

    Far from the Tree is a great boom. Bipolar disorder runs in my family but so is creativity and talent. I passed the genes to one of my kids. Yes , it is not easy to but I am not going to feel guilty. He does amazing things in life.

    • SkepticalGuest

      It’s funny how often we say that it’s mom’s fault for passing on genes but somehow we never blame dad’s, even though dad contributed 50% to the gene pool. (OK, technically slightly less than half, but you get the point…)

      • araikwao

        Yeah, I read a while back that advanced *paternal* age is associated with autism. Disclaimer: I have no idea of the source, or its quality.

    • Certified Hamster Midwife

      Depression runs in my family. I have it, and I don’t plan to have children partly because I don’t want to bring more people into being who have to suffer like that. Maybe it’ll be cured in 20 years, maybe not, maybe it wouldn’t get passed on. The world doesn’t need more sad people and self-blame would destroy me.

      • Ob in OZ

        What if your child is the one that discovers the cure for depression? I hope there are many reasons why someone decides whether they choose to have children. I would consider it a preconception counseling failure if the only reason not to have a child is the fear of that child developing depression. Good luck reguardless of what you choose to do.

        • Certified Hamster Midwife

          What if your tenth child is the one who would have discovered the cure for cancer?

          I don’t have a partner so it’s not really in question anyway. I would not wish my life on someone I hated, let alone my own child.

          • Ob in OZ

            My point would be that you are who you are and having children is a hugh undertaking. No child is perfect, nor are their parents. So you have children because you want to and will do your best as a parent regardless of how they turn out. I just took issue with the idea that having a child with a risk of a problem (and I can’t believe how many comments relate to passing along allergies as a concern, as opposed to something that can have severe implications like untreated major depression). I enjoy your comments so I hope you find joy in your work and at home as well.

          • Certified Hamster Midwife

            Allergies are easier to control. it would be nice to have depression shots.

            I’m in very bad shape now, which is probably coloring my view of the topic. I don’t have much in my life now.

          • Renee Martin

            Are you on the FB group? There is an open group (Fed up w Natural childbirth) and from there you can get into the closed one (Fed up w NCB Zealots). The amount of support, and also pure entertainment, you can find there is amazing. Its quite an interesting group of people. Please check it out!

          • Certified Hamster Midwife

            I used to be. This is a great group of people but it’s difficult for me to be part of a community centered on birth, parenting, and families when those are all things I can’t have. It can be a terrible trigger for me, which is why I disappear from this site sometimes.

          • Young CC Prof

            I can understand that. I had to put off children for years due to medical and other factors, and it became really hard towards the end. I’d expected a child two or three years ago, and there I was not even trying. Other people’s children, even good friends, sometimes hurt me deeply.

          • KarenJJ

            Same. It can be a very hard thing to face. Take care of yourself CHM, we’re all thinking of you here.

          • thepragmatist

            I can’t/won’t be having another child, and I get that. When my ex and I split up I had to stop coming here because I knew with him went the hope of a sibling for my child AND the hope of someone who was willing to support me through what would be a very difficult pregnancy. I am so sad about that. It’s getting better. Prior to that, I wanted a child for years after a termination, and I avoided most things child-bearing related, and tried to take some solace in working with kids, instead. I still feel like my sphere of influence and capacity to create a better world was much wider when I worked with kids. But I do remember those feelings and commend you for being able to come here, because back when I felt like that I could barely get over it to be an aunt.

          • Kumquatwriter

            That’s a rotten place to be. I’m sorry you’re in it – it colors your memories too, at least in my experience. Don’t care if you have kids or not, just hoping you get through the dark time.

          • thepragmatist

            I know it’s trite but when I feel like that I try to meticulously build a vision of what my life will look like in six months. And I’m qualified to comment, I’ve had some pretty awfully bad times in my life. I also do daily gratitude lists, even if I have to pull them out of the stupidest things (I am glad that my car isn’t broken down, etc)… ten things a day. If you’re in a Northern Climate, Vitamin D helps me. I used to have at least 2-3 very bad depressive episodes over the winter, and now with medication + Vitamin D supplementation (at 3000IU) I rarely have them, unless they’re situational. And if it’s a situation depression, remember, it will pass as time passes. I’m getting old enough to see that this is really, as lame as it sounds, true. Hope you feel better.

          • Young CC Prof

            Oh, our baby has an uncle with life-limiting allergic disease, though uncle is better now than he was as a child. I’m not afraid of “normal” allergies like most of the family has, we know exactly how to handle that and we’d probably find it weird if it didn’t happen. I’m afraid of anaphylactic food allergies and regular trips to the hospital for asthma.

          • Ob in OZ

            Didn’t mean to belittle a life-threatening allergy. It is thus revealed I know my specialty but not much outside it anymore. A. Egret example would be the patient with an unrepaired aortic aneurism. She may have a 50% chance of dying in pregnancy, but we wouldn’t do a hysterectomy, sterilization or force termination (if it was legal and available in her country… A topic for another day), but give her the best care we could if she wanted a child. And depending on the etiology of her aneurism ( ex. Marfan’s syndrome), shemayvery well pass the risk along to her child. My point is that even or especially the crazy ones all now expect a perfect child. We don’t take care of the children with special needs anywhere near enough, or support their parents for that matter. It is to a point that young doctors are baffled by the idea that a parent doesn’t terminate a pregnancy if anything at all is found on ultrasound! I’m not even talking downs syndome. It can be a few missing digits.

          • Certified Hamster Midwife

            Anaphylactic allergies terrify me. One of my parents developed a severe bee sting allergy late in life and scared me many times.

        • Lisa the Raptor

          OT but are you an OB in the Ozarks or in the Land of Oz? My minor was Appalachian studies and the Ozarks are the little sisters of that chain and have a close culture separate from “The South”.

          • Ob in OZ


          • KarenJJ

            So a bit further south then.

          • Lisa the Raptor

            Ah ha! Totally different lol. Silly me .

          • Ob in OZ

            No worries mate. Even writing that does not work for me. Still very much smerican

      • amazonmom

        You have every right to decide for yourself if you want kids or not! It’s not like you are my asshat coworker who insists all bipolars destroy their children and should be sterilized…

        • Certified Hamster Midwife

          As long as your coworker isn’t a mental health caseworker, they can just go on and be bigoted and evil.

          • KarenJJ

            Plenty of non-depressed people contribute little to the betterment of the world.

            It’s such a personal decision – I decided to have kids in spite of the cards stacked against me (genetic disease, hearing impaired, infertility) but others with the same syndrome have decided against it. I don’t think there’s going to be a one-size fits all solution. To be honest, kids can be hard – especially when you have other issues going on.

          • Certified Hamster Midwife

            I wish marriage and kids weren’t the default. Single people are really ostracized in our society.

      • fiftyfifty1

        I have no interest in your reproductive choices one way or the other, but I do object to your idea that the world doesn’t need more sad people. Sadness is no fun for the people who have it, but sadness doesn’t harm the world. Cluelessness and meanness are what do that.

        • Certified Hamster Midwife

          Most sad people contribute nothing, and their existence is harmful to themselves and detrimental to their families.

          • fiftyfifty1

            I normally agree with what you say, but not this. I know plenty of people who deal with severe depression and many of them contribute a lot. Your “most sad people contribute nothing” is just bullshit and prejudice. As to how their families ought to feel about the situation, it’s as dumb for you to decide how they ought to feel about their children as it is for other people to tell you how you ought to feel about having children of your own.
            You can decide your life hasn’t been worth it. You can decide you don’t want to risk it not being worth it for your own theoretical kids. But you don’t get to make that judgment for other people.
            I have no rosy glasses about this. I don’t tell myself or my patients fairy tales about depression being some sort of misunderstood superpower. I have no desire to downplay the pain of chronic depression/psychotic depression episodes etc. It’s real and it sucks. But to say that depressed people can’t build lives for themselves worth living is simply untrue.

          • Certified Hamster Midwife

            I see myself as someone with a sad, empty life and no contributions to society, but people who are close to me are surprised at how much paid and volunteer work I take on and how little regard I have for my own work and career. But from the outside, if you didn’t know me well, I just look like someone who has a cool job, and lots of interesting community projects going on at any given time.

          • Elizabeth A

            The way to look like that is to be that, so it’s not like they’re wrong. You being depressed doesn’t make what you do not impressive. It may make you, personally, unimpressed.

            Look, you sound like you’re having a lousy night. I can philosophize at you poetically, but it won’t sink in unless you’re feeling receptive. Some days I find inspirational writers like Anne Lamott moving, and some days they just sound fatuous.

            If you were in my house, I’d give you dinner and tell you to try to get some sleep. If sleep is impossible, comfortable stacks of pillows and a good book are better then writing about how much you (think you) suck.

            I promise that tomorrow after comfort reading is better looking then tomorrow after beating yourself up all night on the internet.

          • Ob in OZ

            And that is why from here ( anonymous internet postings) you personally may be struggling and your recent comments suggest it, but hopefully the same articulate and interesting commentor of days gone by will have better days ahead. It is obvious this topic is difficult for you and I hope your depression improves.

          • Clarissa Darling

            It’s heartbreaking to hear of anyone who feels this way. I have felt this way before. I have always been very functional in terms of going to work, success in school etc….but, at the worst of times my accomplishments seemed empty and meaningless and no one else could tell me otherwise. I know I can’t say any magic words that will resolve these feelings for you but, I hope I can offer some words of encouragement.

            I don’t know you in real life but, if your contributions to this blog are any indication, then your value is much, much higher than you’ve estimated. I guarantee many people do value your contributions in life, even if you don’t. I hope you can learn to see yourself through their eyes.

          • Lisa the Raptor

            Meriwether Lewis (Of Lewis and Clark fame) suffered from major depression and ended up ending his own life, but he also opened up the western end of the US. Many people suffer from depression and do amazing things. It’s not fair to say that they contribute nothing.

          • Certified Hamster Midwife

            I did not say “no depressive person has ever contributed to human achievement or knowledge.”

          • Elizabeth A

            The probability that a single individual, over the course of a lifetime, will be a burden to his or her family is 1. That’s why we invented families – because for most of human history, the probability that a single individual, unfettered and indebted to no one, will die a horrible and lonely death was also 1.

            My grandmother suffered from depression and anxiety, but her family loved her fiercely, and she was a powerful advocate for her developmentally disabled son.

            My own problems with depression and anxiety have not kept me from contributing to my household. I could do more if I had fewer problems, but the household is a voluntary association and still wants me, so it appears to be a win from all sides.

          • Certified Hamster Midwife

            Indeed. But plenty more people are too sad and crazy to find a spouse and just go ahead with that horrible and lonely death thing.

          • Elizabeth A

            Spouses are really not the only option for family formation. There are plenty of less intimidating alternatives for support people.

            My best comfort read suggestion for shitty nights is To Say Nothing of the Dog, by Connie Willis. Only very bad insomnia makes it through the suggestive effect of the first few chapters, and then it’s a romp. Dorothy Sayers’ s Gaudy Night is another favorite. Or Captain Vorpatril’s Alliance, by Bujold.

          • Sullivan ThePoop

            Some people who are neither sad nor crazy never find a spouse and just go ahead with that horrible and lonely death thing. My brother married a woman who has schizophrenia, not paranoid.

          • thepragmatist

            Wow. I entirely disagree with this. I can promise that at least a good portion of the art, music and literature you enjoy was produced by “sad people” and I can tell you that, while I am disabled and unable to be financially independent, I definitely contribute– even when I am very, very sad due to Bipolar and PTSD. My son would beg differ than I am harmful to his life. He knows Mama is different by now, but he loves me and his life would less without me.

          • Sullivan ThePoop

            My husband has horrible anxiety and says things that are definite tells that something is wrong. His are usually health related. If you have depression, the things you are saying are definite tells that something is wrong.

            I am not going to lie to you and say that being with someone with a severe psychiatric disorder is easy, but it is so worth it and he is a successful, amazing person. The main problem I have had is that he doesn’t let people know when he starts feeling bad and sometimes messes with his medication dose or stops taking it.

          • Certified Hamster Midwife

            I have never refused to take meds. I forget sometimes, and then end up in a tailspin of sleeping and not taking things.

          • michelleJo

            Sadness my not cause death or even crime, but it sure breaks marriages, traumatizes children, is hell for the person suffering from it, and puts a burden on the economy. Deciding to take the chance of producing sad people is personal, but it is definitely not a good state of being. That said, and as I mentioned before, in most cases it can be brought under control and the person can live a normal life.

      • Elizabeth A

        I’ve struggled with depression and anxiety my entire adult life, and some times are definitely harder then others, but there are still lighter parts as well as darker ones. On balance, I would rather exist then not, and I would rather my children exist then not. It turns out that the ways that I’m screwing them up are neither the ways I expected nor entirely within my control. I suspect that would be true even if I was robustly mentally healthy.

        We don’t produce people to meet needs, for the excellent reason that people don’t work like that. They aren’t machine parts, there is never any predicting what they’ll be like.

        There is never any really solid, logical reason for anyone to have a baby, in this age where we can mostly choose to do or not do that. Parenting is a peculiar experience, unpredictable, loaded up with hope and fear. Whether or not you want to produce people and embark upon that experience is completely and entirely up to you. “There’s no need for more like me” is an utterance of despair, not a life plan.

      • Poogles

        “Depression runs in my family. I have it, and I don’t plan to have children partly because I don’t want to bring more people with it into being.”

        I also suffer from depression and my mother has bi-polar disorder. I frequently wonder if taking the chance my child would have to suffer through a life with either one of those is worth it, so I understand completely where you are coming from.

        • thepragmatist

          I have Bipolar but I don’t consider it suffering. Yes, it is not good at times, especially under stress or if I am not properly cared for, but for most of my life it has just added to who I am as a person and is part of who I am. I see the world in much brighter hues AND feel things on a much deeper level. On the one hand, sometimes the extremes of mood are paralyzing without medication and the two true manias I’ve had (both brought on by doctor prescribed meds) were frightening (mostly because I didn’t identify them earlier– I think, without education– I would have had a lot more scary experiences at other times), but on the other hand, I am pretty sure that most of the suffering has been almost entirely because of the lack of understanding around me, and a world that already lacks in gentleness, sensitivity, and support. At times when I am well-supported, the disease isn’t as hard to manage. I’ve developed a lot of of coping skills and strategies. At times when I am not well support it is a huge liability. And I do believe it contributed to my developing a trauma disorder.

          • Ob in OZ

            “…a world that already lacks in gentleness, sensitivity, and support…”
            I couldn’e agree more.

          • Poogles

            I fully realize that my feelings on the issue are colored by my own life experiences. My mother’s bi-polar has been largely untreated (non-compliant patient) and is worsened by her alcoholism. My own depression is of the dysthymic variety – the so-called “low grade”, chronic depression. What this means in day-to-day life is that I really don’t get a “break” from my depression – I don’t have “episodes” of depression surrounded by times of relative “normalcy”. It is my normal to be depressed to some degree or another, always.

            I look at my mother’s life and I look at my own, and it would break my heart to see my child going through something similar. I also completely realize that a child of mine would not be guaranteed to have any mental illness, and even if they did, they could have a completely different experience then either my mother or myself.

            It is something I think about fairly often, though, and certainly plays a part in my decision-making as far as having children goes.

        • Ainsley Nicholson

          SSRI’s are a wonderful thing. Like going thru your whole life with a pebble in your shoe (sometimes it hurts a lot, sometimes it only hurts a little) and then having the pebble removed. Sure, you can still get blisters, but it is very nice to be able to walk without pain some of the time!

      • Ob in OZ

        Assume no one looks at comments from days ago unless prompted. Wanted to wish you well as you seemed to be suggesting you were going through a difficult stretch.

      • MichelleJo

        I suffer from severe depression and went ahead and had kids, but I do understand you. It should be known though that the majority of depressions can be brought under control. I live a normal life as a wife, mother, employee, friend, even though I have depression. No-one has to know that I take four different types of anti-depressants in different dosages daily, in order to feel and function like every other person. It can take a while to find the right drugs and combos, but it is very doable.

        • Certified Hamster Midwife

          I was diagnosed 14 years ago and have had maybe 6 months in all that time that I’ve had it under control. I did gain 100 pounds from one med, though, so there’s that.

    • amazonmom

      I had no idea I had Bipo 2 before I had my daughter. My son was a surprise. So many say people like me shouldn’t have kids, but would they say that to my husband? Literally every family member that has died on his side in the last 20 years died of cancer. I sure hope my kids don’t get my illness, but I’ve managed to live a great life with it and I will help them do so too if I have to.

      • Sullivan ThePoop

        My son has Bipolar type 2 and the only person in his family who had it that I know of is his paternal grandmother.

        • amazonmom

          I’m guessing if my family wasn’t so stubborn about seeing doctors more of us would have gotten the diagnosis. It’s hard to believe you may have a mental health issue when you are successful and your social/family life is going well.

      • LibrarianSarah

        If it makes you feel better, my mom has BiPo 2 and neither I nor my siblings do. So if my family is any indication you only have to deal with autism and some learning disabilities.

        • amazonmom

          I’ve been sensitive about it lately, the preggo hormones are really making me all weepy!

    • Olga Mecking

      I have to read it! Depression run in my family and while I don’t have autism, I do have sensory issues. And so does my little girl. She is a wonderful, sweet child who loves everybody, and even though she needed therapy, i somehow understand her better than I do her “more normal” big sister.

    • Clarissa Darling

      I struggle with depression and anxiety which runs in my family. Schizophrenia runs on my husband’s side but, so far thankfully hasn’t developed in him. I would be lying if I said that having kids doesn’t scare me especially because of the prospect of these diseases. I just want to say what a beautiful comment you have written. I was reading next to my son asleep in his bassinet and when I saw this it actually made me tear up. What a wonderful statement for any mom to remember, especially ones whose children cope with medical disorders.

    • thepragmatist

      I see some of my predilections toward Bipolar in my small son. He has always been deeply emotional. Our worker didn’t believe me when I told her at 14 months he had started to have tantrums lasting over an hour. He must have things just so. As an infant, he would have only slept 10 hours a day if I had not forced it. As a toddler, he still won’t sleep easily. It’s hard to grade early mood disorders in children– my therapist says we’re about ten years away from developing early intervention to rival ADHD or Autism, but I think it’s terribly unfair. Because if he is like me, and he may be, and he’s as highly receptive and intelligent as tested, then I would like to give him the best chances possible, which I can’t see myself doing without some sort of guide. I see that he will do great things with his life, even if he is like me.

      The only mistake my Dad made with me that I won’t make with my son is hesitating to medicate him if he seems as though he’s gone too far off the emotional spectrum. When I was first diagnosed, my Dad freaked out and refused medication on my behalf. Years and years later, looking at the wreckage of my life, I can’t help but imagine who I could’ve been with early intervention (eg. preschool, not highschool– by then it was too late in so many ways).

  • InvisibleDragon

    Well, damn. My son is third generation autistic; never even thought of blaming myself. It’s a shame some people need to do this to get on with their lives.

    • Lisa from NY


    • thepragmatist

      It seems to be human nature to want to blame SOMEONE, anyone. There are times to seek blame, like when someone has caused you direct harm through sober actions, for example, but most things, even the horrible things that happen in life, seem to happen for no reason or as the consequence of a whole bunch of bad happening at once. Unless I’m seeking some sort of justice for myself or on behalf of myself and others, I’ve given up even trying to assign blame. As Ani Difranco sings, “Thing about blame/Is blame is much to messy/some of it is bound to get on you/while you try to put it on me…”

  • Lancelot Gobbo

    And I really did cause my son’s autism – by my genes. Lots of eccentric engineers in the family and ASD behaviours getting more noticeable over the generations. But he’s now at the age of 23 and managing to survive far away doing postgrad physics I wouldn’t change a thing about him. We all pass on undesirable genes of one sort or another, and we don’t mean to do it. No point doing sackcloth and ashes, nor blaming every unlikely thing other than genes.

  • mollyb

    Far From The Tree was an amazing, haunting book. I highly recommend it to anyone. So many of the sections truly broke my heart.

  • GiddyUpGo123

    Good lord, I made the mistake of clicking on some other posts on that site, including one rant about how the author hates it when people on Facebook post “Son getting shots today” or photos of kids at well-baby checks. It was a whole page full of self-important shrieking about how idiotic those parents are for “willingly injecting their children with neurotoxins” and then (gasp!) admitting it publicly! She compared it to posting a photo of yourself getting a pap smear. Seriously? Sorry, lady, not the same thing. And if you’re so offended, block them. Defriend them. Whatever.

    Personally, I loved well-baby checks. I wanted to know how well my kids were growing. I wanted to know that they were healthy. And yes, it was hard to watch them get their shots but I sighed a big sigh of relief afterwards knowing my kids were protected from childhood illnesses and wouldn’t be responsible for spreading pertussis to a newborn.

    I don’t think anything gets my hackles up like vaccine denyers. I just want to grab them and shake some sense into them There’s nothing like a bunch of idiots accusing reasonable people of being idiots.

  • Kumquatwriter

    I’m so damn sick of this handwringing about the Autism Boogieman. For pity’s sake, not every autistic person is Rain Man. Many high functioning people on the spectrum are successful, intelligent, independent, funny, and living happy and fulfilling lives! This “his eyes were empty, he had no soul” shit from these quacks makes me rage.

    Autism isn’t a death sentence.
    Autism is not an inevitable horrible outcome.
    Autistic people have plenty of challenges without dipshits saying they’re punishment for Mommy’s “sins”

    • Guesteleh

      Thank you. I know some autistic kids and adults, and you can be pretty damned autistic and still have a good life. My husband worked with an autistic programmer who struggled with even minute changes in his routine, but he still manages to work and has a wife and kid.

      • Mominoma

        That’s all very true. But for autistic folks like my son, a life like that is very likely to NOT be in the cards. He’ll be lucky to find a job, let alone an apartment, a partner, or to live on his own. It is by no means a death sentence, or a hopeless existence. But it’s not always rainbows and puppies and just being “wired differently”. Felt compelled to add that, no hostile intent here. :)

        • Guesteleh

          No, I get it. I know folks whose kids are more severely affected with limited ability to communicate and it’s very hard. But with good support those adults can have good lives too, it’s just that the support out there is so limited unless you happen to be lucky enough to live in an area with good resources or to have a lot of money. Not meaning to understate the challenges, though. It can be a very tough road to travel.

        • Kumquatwriter

          No offense taken, though disqus did dislike when I clicked like. Its a spectrum was the point, not unicorns shitting skittles;)

    • Expat

      I work in a field where a huge fraction of the workforce is somewhere on the spectrum. The ones who are limited by the autism typically get too lost in details and don’t grasp the big picture enough to take a leadership role. The most fascinating characters are the ones who made it into management on the basis of some brilliant research and who have developed sophisticated coping mechanisms to deal with not getting social cues in an easy fashion. They are often forced to act in a particular way (like a normal, social person) and it is interesting to see them when they let the facade fall. These are not bad, sociopathic people, trying to trick you. These are people who love to dive into complexity and tell you what they found. I’ve wondered if sociopathy is what happens when autistic people are badly abused at critical developmental stages.

  • Mel

    I grew up in a family that looks like a OB horror story.

    First pregnancy – identical twins born at 28.5 weeks (32 years ago), twin-to-twin transfusion syndrome, postpartum pre-ecclampsia. Twin A was hospitalized for 6 weeks, needed bilateral pneumothorax tubes. Long-term problems: Hypertonic cerebral palsy; dyslexia; ADD. Twin B: multiple-tranfusions, OJ tube, OG tube, ventilator, hydrocephalic – no shunt, thankfully – umbilical hernia. Long-term problems: Profound deafness; hypotonic cerebral palsy; ADD.

    2nd pregnancy: singleton male born at 40 weeks (29 years ago). OP presentation. Normal Apgar scores. Healthy until two days before death. Died at 11 months, 21 days of setipsis caused by impaired immune system – patient was born asplenic.

    3rd pregnancy: singleton male born at 42 weeks (27 years ago). Multiple inductions required; pre-eclampsia requiring hospitalization. On antibiotics for 9 months until blood tests came back clean indicating normal spleen function. Long term problems: ADHD, asthma

    Did my parents feel guilty about all of this? Yes. Was the guilt rational? No. Mom didn’t do anything that caused these problems. Life just sucks sometimes.

    For the three of us who are living, here’s what life looks like. Twin A (me) is inner-city high school teacher who loves her job very much and enjoying life with an awesome husband – who also nearly died from a 3x nuchal cord that caused massive decelerations during pushing. Twin B (my sis) just married her girlfriend. She works with deaf students who have additional mental illnesses. Our brother lives with a great woman who has autism. She’s like a little sister to us. Our brother is a quirky, hilarious guy with a heart of gold and a great work ethic.

  • Lisa the Raptor

    Dr. Amy, a good historical reference for this would be that of the late Joseph Merek, who suffered a bone tumor disorder but was billed by a sideshow act as having been the result of his mother being scared by an elephant while pregnant with him. These are modern day examples of the same principle.

    • Kumquatwriter

      Joseph Merrick – better known to most as “The Elephant Man”

      • Zornorph

        I own his bones.

  • Busbus

    I started to read the comments on that post (the one Dr. Amy links to) and they are horrible. I stopped reading very fast. From others who blame themselves just like the author does, to quacks trying to sell their bullshit cures, to lots ad lots of people who basically respond, “good for you for being so self-aware! now others will maybe think twice before they get ultrasounds etc.”. How can there be so many irrational people?? It’s mind-boggling. And a little frightening, to be honest.

    • AllieFoyle

      That site is bad misnamed.

    • Busbus

      Ok, I just looked at that website some more… Ach.

    • C. Smith

      It really is sad how many people are majorly misinformed. I have 2 autistic kids, my oldest and youngest, and my middle child is the one that I had ultrasounds with every other week almost my entire pregnancy due to a high risk issue. She’s also the only one that had her full vaccine schedule on time, I took tylenol with her when in pain and she was the only one I needed Pitocin with for an induction. So based on there logic she should be my autistic child, but she’s not. She is a typical 9 year old. My youngest has a genetic anomaly that they say is the cause for his autism, my oldest daughter doesn’t have anything genetic, she’s just autistic. I also hate when parents start with the self pity crap too, like they can’t go to the store or run normal errands daily due to their child’s disability. I drag my kids everywhere with me, and they know when we are in the store a certain standard of behavior is expected of them, yes there are the rare occasions where something might set them off, but let’s be honest, ALL KIDS have at least one bad shopping trip when you go out, it’s not something uncommon when dealing with kids. I see a lot of autistic kids in my kid’s play groups that are sheltered from the real world and never get to experience so many things, and they are not severe kids that can’t, their parents just don’t want to be seen having a hard time with them. I can understand that, it sucks when people stare, but honestly one day these kids will be adults and then what? They can never go shopping for themselves or anything and they fear the outside world. It’s really sad, I wish they would just treat their kids like any other kid, it has worked so well for me I can’t imagine my kids are the exception in this.

  • Squillo

    It’s human to wonder about these things and to try to find connections, but I tell myself that every moment I spend fruitlessly wondering how we “gave” our son autism is a moment I’m not either helping him or simply enjoying him, and it certainly doesn’t help me or anyone else. I might as well wonder how we “gave” him his incredible talent for drawing.

    • VeritasLiberat

      Possibly the autism and the talent for drawing are linked. The autistic brain is often focused on details, and the increased ability to “see” detail is important in drawing.

  • DiomedesV

    Maybe the people commenting generally assume the best about others, but I didn’t read her post quite the way you did. I read it as wallowing and self-pitying.

    Even IF she is responsible, what good does this level of self-flagellation do? And I say that as someone who is generally paranoid and inclined to take responsibility for any perceived problem in their child. There were aspects of my pregnancy that made me worried about my child’s development and it wasn’t until my child was walking and talking that I felt relieved.

    Notice that she didn’t list the fourth kind of person: 4) There will be people who say that none of these behaviors cause autism, that I shouldn’t blame myself needlessly, and instead of wasting my energy on this, that I should do whatever I can to get my son effective treatment. Don’t bother, because that’s not what I want to hear. Accepting the uncertainty of his prognosis while looking for effective therapies is hard and I’d rather sit here and talk about what his prognosis means for me and my feelings rather than talk about what can be done for him. Also, blaming myself makes me feel like I’m a better person than people who don’t take responsibility.

    I realize this is harsh and I am sure that she is well intentioned to a certain extent. But there is a certain personality that likes to be publicly unhappy, even inconsolable.

    • AllieFoyle

      No, I saw it that way too, to an extent. She claims to be taking responsibility for all these things, but the subtext is that these other evil forces (the usual suspects–OBs, big pharma, heartless companies peddling poison to the unsuspecting masses, etc.) pushed these horrible toxic things on her. Now that she knows “the truth” she’s putting on her Brave Mama hat and making sure that other women fear coca cola, pain killers, antibiotics, vaccines, pitocin, ultrasounds, and c-sections. Now that she’s put it out there you have no excuse if you do any of those things and your kid ends up with autism.

    • Young CC Prof

      You know, over the summer I spent quite a bit of time around my friends and their children, one of whom is autistic. And what spending time with them while carrying my first child taught me is that their son is a gift to them, that any child is a gift, even one who didn’t turn out exactly like you expected.

      This is what the “X caused my child’s autism!” activists seem to be missing. Too much obsession with the child they should have had, not enough thinking about the one they do have.

      • Amy Tuteur, MD

        That’s a fascinating idea, that the mother’s insistence on blaming herself is, at the same time, a fundamental rejection of the child. It reflects a belief that the autistic child is not an authentic person, but a broken one who could have been so much better.

        • Young CC Prof

          I’ve definitely seen some of that on the anti-vaccinationist and “biomedical” communities. They talk about “recovering” the child that autism stole. It’s not some kind of fairy changeling, it’s your child. DEAL.

          • Squillo

            It goes along with the “othering” of the disabled in general, I think. It’s particularly sad when it’s a parent and reminds me a bit of parents who want to reprogram their queer children.

          • C. Smith

            The torture those kids receive at the hands of these DAN doctors as their parents try to “recover” them is horrifying. One kid in our playgroup ended up with a ruptured bowel from all the colon cleanings he was receiving to clear him of heavy metals cause the doctor told her that is why her son had autism. I felt so bad for the kid he always looked so sick and lethargic, it broke my heart.

          • Amy M

            Not “like” per se, the up vote is more of an acknowledgement. That is just awful.

        • Mel

          That reminds me of the people who can’t fathom why my deaf twin sister doesn’t want to be hearing. Seriously, people get freaked out about the fact she doesn’t want a cochlear implant. She sees her deafness as an integral part of her life…. not a drawback.

        • Guesteleh

          This is exactly what I thought when I read this.That all of this flagellation is dehumanizing her child.

        • Dr Kitty

          Welcome to Holland by Emily Perl Kingsley is a poem about accepting your disabled child for who they are, not who you wanted them to be.

      • Squillo

        I remember one well-known “warrior mom” tweeting something like “Cheer yourself up by putting a picture of your kid before s/he regressed into autism on your desk.”

        That said it all, and it makes me wonder what kinds of messages her autistic kids get from her, that she’s willing to tell the entire world exactly how little she values them as they are.

        • Mel

          That’s really sad. I had the pleasure of caring for a girl with high-functioning autism starting when she was 3. She was awesome. Sure, she struggled with communication and interactions with people. She also had a memory like a steel-trap and would tell you exactly what she thought. I cared about her….not the person she would have been if everything was different.

          • Karen in SC

            No child is perfect and parents should love their kids for who they are, full stop. But I admit sometimes when my teenagers are ignoring me or not doing what I think they should be doing, I need to remind myself of that.

            That’s probably more difficult with a special needs child, but not impossible.

          • Amy M

            I am grown with children of my own and just last weekend my parents told me what a disappointment I am to them. You know why? Because I moved 4 states away and live a secular life instead of practicing the religion I was raised in. The fact that I am successful in my career, married a wonderful man who is an excellent father, have two beautiful children, have never committed a crime, don’t do drugs, hell I’ve never even smoked a cigarette…not good enough. I wish they could keep this: (“No child is perfect and parents should love their kids for who they are, full stop.”) in mind. I suppose if I was autistic that would be fine as long as I lived close to home and practiced the religion they raised me with. Sigh. The difference with them is they don’t blame themselves…they didn’t fail as parents, I just suck I guess.

          • Amy M

            Sorry, had something here, realized it was silly and irrelevant, so I took it away.

      • Elle

        I know a few families who have children with Downs syndrome, and they are basically told that they need to have a period of grieving for the child they didn’t have – the one in their minds that was “typical.” Because that child never really existed anyway. Once they have been able to grieve for their old expectations, then they can begin to accept their child for who they are and appreciate all the wonderful and unique things about them.

  • Amy M

    I understand that if my sons (one or both) turn out to have ADHD, that is not my fault. It’s not even my husband’s fault, though likely it came from him genetically, since he has it. I guess it could be argued that we took the chance that we’d produce children with ADHD (and asthma for that matter), since we knew one big risk factor is a parent with ADHD. Another risk factor is prematurity…our sons are twins, and they were premature. Not very, but still…..

    But, if anyone makes that argument, then its getting into eugenics territory and that’s not ok. My husband and I love each other and wanted to raise children together. Of course I’d rather that my sons not have ADHD–if they do, it will make life harder than it needs to be for them. But if they do, we’ll do our best to give them the tools they need to deal with it, because most of us don’t win the genetic lottery, and we love our children anyway, flaws and all.

    • Young CC Prof

      Good point.

      I’ve realized that the child I’m carrying does not have one single close relative without some form of allergies. My husband and I both have asthma, seasonal allergies, eczema, and mild food allergies. At this point, the genetic dice seem to have the same thing on every side.

      But I made my choice, and my child will be loved and cared for no matter what happens. I certainly hope that the child winds up either no allergies or with allergies no worse than ours, but I realize severe allergies are possible. No one’s genome is clean and perfect, you just deal with the child you get the best you can.

      • theadequatemother

        Or you rub them all over with your magical vaginal flora! ;)

    • Dr Kitty

      I’m horribly allergic to antibiotics, have Spina bifida and there is a family history of CDH, autism and allergies of all kinds on my side of the family. My husband has hayfever and there is a history of congenital cardiac abnormalities and cancer on his side.
      The idea that we wouldn’t have children because of that…no.

      We’ll roll the dice and love our kids whoever they are.

  • PrimaryCareDoc

    I have done every single thing on her list, and my son is not autistic. What is her response to that?

    • Young CC Prof

      Well, that’s not necessarily a valid argument, unfortunately. “I did X and Y didn’t happen” does not disprove the theory “X increases the risk of Y.”

      What you actually need is, “large well-controlled studies show no association between X and Y.” Luckily, for most of the factors she mentions, we have that. And the pitocin study is garbage, I think it was actually deconstructed here.

    • Elizabeth A

      There isn’t one, of course. Autism is less common then first trimester skiing, but that doesn’t stop anyone from theorizing.

      The refuge I most often see taken is to hide behind the “complex, multifactorial” features of the condition. Your son is not autistic because you got lucky. Her son is autistic, because she took those risks and didn’t have your luck.

      It’s actually far more painful and insidious that way. She thought her baby would be fine because women do those things every day and have perfectly healthy, neurotypical children. In other words: because the preponderance of evidence was that ultrasound, pitocin, c-section, flouride do not cause problems. But somewhere in all that, she must have taken some unseen step too far, or had some genetic flaw, and therefore, it’s all her fault.

      I don’t buy this line of argument at all, but I can follow it where it’s going. The biggest problem for the “my fault” argument is not the neurotypical children of people who did all the things that are supposedly wrong, it’s the existence of children who are autistic even though their parents did none of those things.

  • Young CC Prof

    I have definitely seen this with my friends who have children. K. has an 8-year-old autistic son, and she’s very smart, she’s very pro-science, but every time she sees some crappy article about autism written by someone who doesn’t bother to distinguish between correlation and causation, it makes her question everything she’s done all over again.

    There are big advantages to prenatal care, to avoiding certain well-established poisons like nicotine, and to getting reasonably decent nutrition during pregnancy. But these messages have been pressed upon women so hard that we now start to believe that doing everything perfectly guarantees a perfect baby, and that’s just not true.

    Our ancestors buried children, sometimes over and over, they’d see children born damaged and never know why. Sometimes they blamed their own sins, their neighbors’ curses, but many of them were able to say, “God’s will,” and move on, though they grieved forever. Perhaps we need a bit more space for that sort of attitude.

    • Ra

      I’ve been working on a project which involves transcribing death records from the 1700s-1900s. So far, I’ve done records from South Africa, Maine, and Illinois. I’m willing to bet that at least 1/3 of of these records are children under age 3, with a large quantity that are under 1 month old. It’s heart-breaking. I’m so thankful for c-sections, pitocin, ultrasounds, antibiotics, and vaccines that help prevent the tragedies of the past.

  • Stephanie

    Has anyone reviewed study that showed a link between autism and paternal age? I would be curious what everyone thought.

  • Lizzie Dee

    This woman isn’t exactly blaimg herself though is she? She is blaming a whole list of things she has now decided are harmful. How does she account for the fact that lots of people who also used those things DON’T have children who are autistic?

    I can sympathise with the anguish that can come from looking after a child who suffers or struggles, of course. But I don’t have a whole lot of sympathy with someone advising others to avoid ultrasound or CS.

    • Amy M

      Yes, based on that list, both of my children should have autism and so should I. In fact, based on that list, the rate of austism should be almost everybody born in the last 40 yrs or so (in America at least), thanks to the tylenol, vaccines, abx and hfcs.

      I get that this woman is upset, but that makes absolutely no sense at all. At least the anti-vax nuts argument, while disproven and fraudulent, was logical.

      Serious question, is this a generational thing? I’m pretty sure my parents don’t blame themselves for my sister and I having asthma. Or maybe it is just that they understand that asthma has genetic components (our mom is asthmatic) and environmental ones which were beyond their control. Of course my grandma always blamed my mom, because we lived in a house wo/a basement.(!?!) So maybe its more about education level than generational?

      • Guesteleh

        I think it is generational and also to some extent class-based. In the past, people knew that bad shit happens and sometimes there isn’t a lot you can do to prevent it. But when you reach a point where you do have a lot of control over some things, especially if you have money and insurance, it can completely blindside you when bad shit happens anyway.

  • Rochester mama

    So much of pregnancy and early childhood now is about inputs. Don’t have the tv on EVER, have the right toys, make sure to get enough DHA, but not too much fish. It’s hard to accept our children are individuals not a science experiment or recipe where you just need to gather the right ingredients and things will turn out perfect.

  • Dr Kitty

    So, so sad that anyone could think like that.
    That level or guilt and blame isn’t good for anyone, and it is so senseless.

    You don’t make your child autistic any more than you make them gay. It’s different neurological wiring, with a multifactorial aetiology- but it is almost certainly NOT due to the things this woman believes causes it.

    • Mominoma

      The thing is, in the early days after my son was diagnosed, I, too, looked for the whys and wherefores and Why God My Son? stuff. The short answer has always been that if there’s a reason for the WHY that we can point to, some specific thing, then maybe there’s a way to undo what’s been done. A cure. A way to make things better or easier for both the kids and ourselves, I guess.

      It’s been six years since my son’s diagnosis, and I’ve largely come to terms with the idea that the answer is likely to be very complex and/or genetic.There will be no cure (and if there is, I’m not sure I would want it, since it’s such an intrinsic part of who my child IS) and there’s nothing I could have done differently to prevent this from happening to my son. The only thing left to do, then, is to raise him the best that I can and leave the conspiracy theories to others. He needs me to believe in HIM, not in woo or whys. I hope that this woman and others like her can find some kind of peace, if not acceptance. It will be better for her if she can.