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Do You Feel Guilty About Your Child's Autism?

By September 12, 2011


Whose fault is autism?

It was a very long time ago that the "refrigerator mother" theory of autism was tossed out the window.  Now, no reasonable person would suggest that mom's bad attitude is a direct cause of autism.

So why do so many parents have feelings of guilt about autism?  There are two likely reasons.

First, some parents may feel that their genetic legacy is the problem.  They've seen autistic symptoms in their own family, and now note their child is an awful lot like Uncle Bill or Aunt Sally...  Of course, this is perfectly possible - but of course no parent can control the genes they pass along.  One could decide not to have children at all, given genetic flaws in one's heritage, but that would certainly limit the number of children in the world.  After all, none of us comes from a long line of genetically perfect people!

The second reason so many seem to feel guilty about their child's autism relates to the belief that something mom or dad did directly caused autism in an otherwise healthy child.  This concern is much more serious, because it suggests that mom, dad, or both could have prevented the autism if only they'd taken or avoided a specific action.  And the media around autism certainly supports this idea.  Could the autism have been prevented if only mom had avoided the tuna or the flu shot during pregnancy?  Could dad have "just said no" to autism by taking a job in a town that was less polluted?  Was it all about the vaccines that mom and dad "allowed" their pediatrician to inject?   Blogs, videos, TV interviews and radio all offer up stories of parents beating themselves up over just this sort of possibility.

What makes all this even tougher is the fact that very few families really know why their child is autistic.  Unless your child has a specific (rare) genetic disorder or there has been a known exposure to unusual substances (valproic acid in utero, and a few others), you will likely never know.

Do you feel guilty about your child's autism?

Share your thoughts!

Comments
September 12, 2011 at 9:45 am
(1) Stuart Duncan says:

There is nothing to feel guilty for and wallowing in guilt helps no one anyhow.

September 12, 2011 at 11:25 am
(2) JJ says:

No guilt here Lisa Jo. We were all brought up to trust our Doctors. None of us ever imagined that they could be so incompetent that they would destroy our children right before our very eyes. None of us imagined that after they injured our children they would then abandon us. None of us imagined that the best and brightest of the medical profession would just stick their heads in the sand after realizing millions of children have been needlessly harmed. I don’t feel any guilt Lisa Jo. Anger? There are no word to describe my feelings towards the medical industrial complex especially the pediatric profession. The evidence of harm done is overwhelming!

September 16, 2011 at 9:39 am
(3) Anne says:

You said a mouthful sister!!! I have learned to let the anger and hatered go againist the medical profession. I still can not understand how this could have happened but hopefully a cure as well as a reason will surface in my lifetime. I love my non-verbal, low-functioning son with autism but often wish things were different. He is a happy teen-ager with many behaviors that often stand in the way of his learning. We all do the best we can to help him in everyway possible. We are fortunate to have a good support sysytem!
After four years of feeling gulity, I finally decided to stop and begin to reach acceptance. It feels pretty good to have the weight lifted from my shoulders.Keep the faith and always have hope.

September 12, 2011 at 12:16 pm
(4) Ilene says:

How can a parent NOT feel guilty at times? Even when we know it’s not our fault there are still so many unknowns. What about the time this happened during my pregnancy? What about that time where I was paying attention to the television and my kid wandered off for 3 seconds? There are always little things that make us play the “what if” game.

But no, it’s not our fault. There are just days (or moments) where it’s easier to believe that than others.

September 13, 2011 at 7:59 am
(5) Chickie says:

I agree. I can’t help but to feel guilty somehow, like maybe I had no knowledge of vaccines, or an illness like Rodavirus. My son got Rodavirus when he was 11 months and after that, he was a completely different child, like as in Autism was very prevalent.

September 12, 2011 at 12:19 pm
(6) Ilene says:

How can any of us say that we never have times where we DON’T feel some of the guilt? I know that it’s NOT our fault, but we all have those moments where we find ourselves playing the “What If….” game…..What if I didn’t take that dose of OTC medicine for that terrible headache when I was pregnant? What if I just engaged him/her a little more when he/she was 3 months old? What if I didn’t leave them in the crib for those 5 minutes while I took a shower? All parents question their guilt about everything.

But NO, it’s NOT our faults. But those moments still exist. Some days/hours, it’s more obvious than others.

September 12, 2011 at 12:38 pm
(7) Gretchen says:

Sort of, yes.

September 12, 2011 at 1:38 pm
(8) val says:

used to but no.

September 12, 2011 at 1:55 pm
(9) Sandy2000 says:

I think there is a time and place for guilt, but many things in life will always be an unknown reason. Every parent did what they felt was right. Every parent is a good parent. Human nature of course is the need for answers, and human nature is not easily accepting it when there are no answers. I have never felt guilty about my child’s autism, but I know many do. Nothing I did or didn’t do caused it.

September 12, 2011 at 3:46 pm
(10) Harold Rongey, Ph.D. says:

I quite agree that autism is not the fault of the parent. What I find to be more important is that the parent is the only one that can fix the problem. If a picky eater is lacking an adequate diet that is not the parents fault but to find a way to make sure the needed nutrients are consumed is the opportunity for the parent to fix the problem. Autistic children have been found to be lacking several critical nutrients for proper brain development.

September 12, 2011 at 3:59 pm
(11) autism says:

Harold, I appreciate your thoughts. But the reality is that, while a good diet is a fine thing, it is not going to “fix the problem.” Autism isn’t caused by bad nutrition, and it can’t be “fixed” by proper nutrition.

Of course, if a child has stomach or intestinal issues, a change in diet can help a great deal. But that’s a different issue.

Once again: parents cannot cause or cure their child’s autism through simple nutritional changes.

Lisa

September 12, 2011 at 7:30 pm
(12) sylrayj says:

Thanks, Lisa. If autism were repaired by a good diet, then Temple Grandin among others shouldn’t have any difficulties by now.

September 13, 2011 at 8:19 pm
(13) Christine Zorn (@sugrNspiceLife) says:

Yes, I do feel guilty at times. I wonder if something happened during my pregnancy that I could have prevented.

The idea that parents are the only ones that can fix the problem….I think that’s where a lot of parental guilt comes from, too. That’s a really high expectation to put on parents…to fix something that probably isn’t fixable.

September 12, 2011 at 6:54 pm
(14) Malia says:

Initially, I had a long list of possible causes… and I still have that same list, plus or minus as few of the original possibilities. Some of them would, if they proved to eventually be the cause, cause me to feel some guilt; but as it stands all I can really say is I honestly don’t know whether I should feel guilty or not… and until someone can provide me with a definitive cause for my individual son’s autism, that uncertainty is all I’ll ever have… and I’ve learned to comfortably live with that.

September 12, 2011 at 11:50 pm
(15) Jjkard says:

Sure, I feel guilty … And quite often. Add to ilene’s list of “what if’s” from the pregnancy and first months of his life the pressure to spend every spare minute either doing discrete trials or calm counts or finding new activities for my six year old that are age appropriate that he is motivated to do. Oh yeah, and don’t forget about new biomedical treatments to try…or give up on and then wonder what might have happened if only you had stuck it out.

Also feel guilty whenever I sense my throat tighten at the park when a typically developing child approaches my little guy with a simple invite to play tag or share a tireswing. I feel guilty
that I wish so badly that my little guy would just once join in rather than run the other way. It really never ends.

Guilty. Guilty. Guilty.

And if I eventually decide enough is enough…then I’ll feel a new flavor of guilt.

September 13, 2011 at 5:03 am
(16) Hope says:

I think it’s about time that there is an opinion from an autistic woman’s point of view.

No, I am not a mother… yet. But I am of childbearing age and who is to say I won’t have children in the future? Because after all, Autism does not prevent me from having children. So many in my community, no matter where on the spectrum they are, are shunned for bearing children (even if they were married and had jobs) and this is were Autism advocacy is severely leaking. Millions and millions of dollars poured into fear mongering and looking for some magic pill to make a child ‘normal’ while that money could have go into improving education for Autistic individuals, especailly Sex Ed! Yes, peeps, were do the hokey pokey like everyone else, even with those of the same gander. Even though we can have sex, we need to be armed with info on sexually transmitted infections e.g. HIV/AIDS and how to prevent them for example by using a condom.

Just a thought.

September 13, 2011 at 6:28 am
(17) Sandy2000 says:

Although this topic does jump on the same band wagon of all those videos, TV interviews and radio promoting guilt with little positive reinforcement or positive ways to step away from guilt, I believe much of that sex ed is taught in health class, but that specifically otherwise is a parental responsibility; to educate their child on sex ed.

September 13, 2011 at 7:28 am
(18) Malia says:

I’d be interested, but I’m not sure how one would go about teaching a “special” version of sex ed specifically to children with autism. Social skills classes already fall under heavy criticism from people with autism on a number of different points… and wouldn’t this really just be another extension of that?

September 13, 2011 at 7:47 am
(19) Carrie says:

Never guilt, just angry. I love my little man but I would give everything I will ever have for him to be a typically developing child. And, before the criticism starts, I have Asperger’s.

September 13, 2011 at 10:43 am
(20) Dee says:

I do have a reasonable picture of factors, including genes, that created a perfect storm that disrupted his brain, immunology, and stomach. And some of the things were out of my control but many, many were in my control… If only I knew then what I know now. I know I can’t change the past. I try to focus on all that I can do here and now. I think that going through the regressive model of symptom onset causes more guilt… and more of focus on restoration. Just my two cents.

September 13, 2011 at 3:40 pm
(21) Kats says:

Major guilt all the time, convinced it was something in my pregnancy. Dee interested to hear what you think caused it?

September 13, 2011 at 7:47 pm
(22) nattyNnice says:

I have had a huge amount of guilt over the years and still do. I know that it was nothing that i did, i didn’t smoke, drink, take any meds, ate right all that stuff etc. but i think it is just the nature of most moms to blame themselves. I would be so happy if someone could tell me it wasn’t genetic so that i wouldn’t worry so much about having another child but i know that i wouldn’t love them any less autism or not. I have a very awesome Lil Man right now who is the ligh tof my life :)

September 14, 2011 at 2:48 am
(23) Xanthe Wyse says:

Is the refrigerator mother garbage really thrown away? When my saw my son’s report after diagnosed with AS (after the psychiatrist initially incorrectly diagnosed him with ADHD after 5 minutes), I was shocked to see RAD on there (reactive attachment disorder). RAD is where child has been neglected etc.

After a ‘please explain’ letter, the psychiatrist admitted that doesn’t apply to us & she only put it on there while exploring possibilities early on.

September 14, 2011 at 9:14 am
(24) Malia says:

I agree. I don’t think the psychiatric community and certainly all of society has actual put the refrigerator mother theory completely to bed… it just goes under different names (like RAD). It’s one reason why I find it somewhat upsetting when other parents of children with autism start implying that my son can’t have “real autism” because he displays some different behaviors than their child. It makes me wonder then, do they think he has something else, like RAD; and that can start me feeling unnecessarily guilty or defensive.

September 14, 2011 at 9:22 am
(25) autism says:

Wow – interesting! I’m certainly clear that “blame the parents” hasn’t disappeared as a mantra, but haven’t personally heard anyone suggest that autism is a result of RAD. Sorry to hear you’re dealing with that.

Lisa

September 14, 2011 at 12:40 pm
(26) vmgillen says:

About two decades ago, after fighting for tests, ruling out all manner of Dx’s, etc, etc, etc (we ALL know how that goes!) the only possible/available intervention was through the APA’s Karen Horney clinic- the kids were mostly RAD/Affect: kids who had been emotionally traumatized (didn’t Horney make her name studying child Holocaust survivors? I should have anticipated the disconnect: I’m guilty!)

Any way, let’s re-frame this: ALL parents, particularly the mindful ones reading blogs, feel guilt. Some parents of NT children become almost psychotic because their child is not in the right school – just like those of us with ASD kids.

I’ve said it before, I’ll say it again: without a decent aetiology… making this discussion”autism” specific is dangerous.

September 14, 2011 at 3:23 pm
(27) Sandy2000 says:

vmgillen is right. Making such a discussion autism specific as if it only happens to those groups is dangerous and I’ll add it doesn’t offer any proactive methods to get through that guilt.

September 14, 2011 at 3:55 pm
(28) Malia says:

I’m not sure I understand your post. A lot of parents are susceptible to feeling guilty (though not all). Some do feel guilt that is deserved (i.e. there are, for example, abusive parents out there); others who perhaps deserve to feel some guilt never do; and others feel guilt to varying degrees even when it is not deserved. Similarly, some parents in the world are actually psychotic and that has little to do with whatever guilt they might feel or whether or not their child is autistic or neurotypical. Depending on the psychosis involved, some psychotic parents would not ever feel guilty in the least over anything at all.

I do agree that aetiology is the issue – not just for ASDs, but a whole host of other psychiatric disorders, many of which have several overlapping symptoms with ASDs and no clearly stated way of separating these disorders from ASDs or even, in the case of some, from each other. An extension of this issue is the fact that many of the effective treatments also overlap the various sections of the DSM.

Here’s another list of RAD symptoms: http://www.attachment.org/pages_what_is_rad.php

September 14, 2011 at 4:00 pm
(29) Molly says:

No, I don’t feel guilty for “causing” my son’s autism. But I will say that ASD’s seem to run in my husband’s family. All 4 of the male grandchildren (children of different siblings) are on the spectrum. What I do feel guilty about is that I’m not doing enough or what is best for my son. I think any parent worries about making the “right” decision for her child. Having a special needs child just seems to up the ante. I can feel like every decision will impact the rest of his life and since much of the journey with a child on the spectrum is uncharted it can be a case of, “Your guess is as good as mine.” I have found that sometimes other special needs parents can be very judgmental or critical as if their way is the only way and if you don’t agree you’re not as good a parent. I believe each child is different and each family is different which means solutions can be different.

September 14, 2011 at 6:25 pm
(30) Sandy2000 says:

I’ve had other parents be out right angry I don’t do any diets, and others trying to sell me the newest fad products. I think a good part of the autism community contributes to guilt-feelings, some intentional, some not. How I got over the critical decision making is the idea any of it can be changed at any time and none of it really would be as critical as some sites and reading makes it to be. My son is still going to progress, and at ‘his’ own rate, not what someone expects of what his rate should be. I also don’t have guilt over not being able to provide this or that therapy or intervention. I am doing the best I can and that’s all any parent can do. If I had that guilt, it’d also extend to not having a bigger car, a larger yard, more neighbors, more children than one…. I think of the positive things I am doing.

September 14, 2011 at 5:00 pm
(31) widaisymom says:

Completely agree with that. Once I get past the guilt of what I did that may have caused this (pregnancy, early care, etc.) then it is have we explored every option, have I spent every waking moment continuing the therapy after the therapists have left for the day…and the worst for me: the different parent I am now for my older child who does not have any ASD and is becoming a mini-adult in his worries at the age of 8 after watching his dad and I. I simply don’t have a moment where I couldn’t have done something better. For those who would post “get some personal counseling”, I have and at this point… as long as my little girl has Autism, I think I will have some form of guilt.

September 19, 2011 at 9:34 am
(32) NanNJ says:

I think we should look to the idiots at the CDC who, oops didn’t add up the amount of mercury and diseases that are being directly put into the bloodstreams of our infants before the immune system is developed. If you really, really think about it…it is absolutely insane.

September 19, 2011 at 10:36 am
(33) Donna says:

For years, I knew there was something different about my son. His pediatrician thought that it was just depression and wanted to give my son antidepressants. Of course, antidepressants didn’t help. Finally, I had to contact a specialist myself. It still took nearly two years before the pediatrician would write the referral. Finally, after my son had passed his 14th birthday, he received a diagnosis of autism.

Do I blame myself? Of course not. Do I blame the pediatrician? Not really; but, if he had not been so insistent upon a diagnosis of depression, then possibly we would have gotten referred to a developmental specialist sooner.

September 19, 2011 at 10:39 am
(34) Sally says:

There is no point in worrying why. That’s a waste of energy, it is what it is. It is more important to spend that energy in figuring out what is best for Meg. What can I do to make her life the best life possible, just as I do for my other two. Worrying why is like trying to change your eye color. When I notice she is struggling in some area I spend that energy figuring out what I can do to improve that area. She used to be terrified of speed, so I put her on a swing and held and rocked her back and forth about 4 inches. After a while we went higher, then I would let her go, it took a while, but soon I had her swinging high and she was laughing. Now speed is not an issue. I say to parents worry about what is and not what it could have been.

September 19, 2011 at 2:04 pm
(35) Marilyn says:

Hi: I hope I can qualify for answering your question as I am the grandmother and not the immediate parent. As far as we have searched back, there is no genetic factor showing any obvious autism spectrum traits. Even if we did, I don’t see any cause for guilt. I consider my grandchild a gift from God and one who I would give my life to protect. We have bipolar in the family, or at least it looks that way with my brother just being diagnosed and my daughter given the same diagnosis. But as far as feeling guilty, no. Life happens, we accept it and go on the best that we are able.
Unfortunately, Meghan’s father decided that the diagnosis is wrong, she is non-verbal because she doesn’t want to talk, etc. She is by the way 16. He is so far out of the picture now, never even calling to ask about her. This is his loss and perhaps he feels some guilt. No one knows. Blessings to all the parents having children with autism. It is not always easy, but it is part of life’s ups and downs and I feel there are many more good times than bad.

September 20, 2011 at 8:08 am
(36) Rose says:

I think as moms we will always somewhat blame or praise ourselves for our childrens positives and negatives through life….I think it’s just true love to feel responsibility.

September 20, 2011 at 8:14 am
(37) autism says:

Rose – I agree on the point about responsibility… but guilt – that is, beating yourself up for causing your child’s autism or not doing enough to cure it – is a different thing. Guilt is usually a negative emotion, as opposed to a desire to do the right thing.

Best,

Lisa

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