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Opinion / Columnists / Connecting matters

Should scientists study mothers of children with autism?

by  /  12 April 2016

A child’s autism often first comes to light because of his or her atypical language development and social communication skills — differences that researchers have found often later carry over to a younger (‘high-risk’) sibling.

Women are exquisitely tuned in to their babies’ vocal patterns, and studies have found that they intuitively foster their child’s language development by responding to the complex vocalizations — consonant babbles such as ‘ba ba,’ for example — that emerge by around 9 months of age.

Connecting matters: Helen Tager-Flusberg links autism science to societyIllustration by Ivan Canu

Connecting matters: Helen Tager-Flusberg links autism science to society
Illustration by Ivan Canu

In a study last year, my colleagues and I investigated whether mothers of infants who have an older sibling with autism respond to their baby’s vocalizations in the same way that mothers of typically developing children do1.

Through this work, we aimed to better understand reciprocal patterns of vocalization between infants and their mothers, and how those relate to later language development. Our hope was that the results would help scientists develop treatments that encourage speech and language acquisition in children with autism.

What we found, however, was that women are highly attentive to their infants’ coos and babbles whether or not their older child has autism. Even women who have features of autism (but not autism itself) or who are depressed respond typically to their infants. So, whatever minor differences in language emerge in these infants do not stem from differences in mother-child communication.

We thought our findings were important and believed readers would see them as positive. But our work provoked some bitter reactions.

One blogger on a fringe autism news site described our study as “bullshit,” and a commentator on the blog questioned my colleagues’ and my credibility as scientists. These bloggers seem to think that any exploration into the interactions between mothers and their children is insulting. They saw us as blaming mothers for the language deficits of their children with autism. Nothing could be further from the truth.

Blame game:

The implicit message from these and other comments on our paper was that studying how women interact with their children with autism should be off-limits. But bending to this kind of criticism can be dangerous for science.

These sorts of reactions may represent an extreme view, but I do understand where the sensitivity to this type of work comes from. One of the field’s pioneers, Leo Kanner, first proposed in 1943 that ‘refrigerator mothers’ — who were cold and unemotional — might be to blame for their children’s poor social and language skill development. Although this theory has been fully discredited — even Kanner later distanced himself from the idea — the damage it wrought has not disappeared.

Too many women still hear from professionals, family and friends that perhaps they did or didn’t do something that caused their child to have autism. Many of the parents who have participated in our research over the years carry profound guilt about their child’s condition even when no one has directly accused them of contributing to it.

The scientific community is partly to blame for this message. Although scientists no longer view parental behavior as causing autism, biological and environmental investigations can implicate parents in various ways, though most have nothing to do with parenting style. Genetic studies tend to highlight the transmission of ‘risk’ genes from parent to child, parental age has emerged as an important demographic risk factor, and evidence is mounting that too much or too little activity from the mother’s immune system during pregnancy can raise the risk of autism in her child.

So it is no wonder some parents feel as if they’re to blame — in one way or another — for their children’s autism. But should the chance of making parents feel unnecessarily guilty stop scientists from conducting studies that explore the role of parents? My answer is no.

Two-way street:

Still, we autism researchers may want to consider how we communicate with the community that is so invested in our work. We need to better articulate what we are studying and why. Parents deserve great credit for pushing for more research funding and enticing leading scientists to turn their attention to autism, so they are justified in demanding a lot in return.

Years ago, I had concerns about studying mothers’ behavior. I entered the field at a time when psychoanalytic theories of autism still held currency. Like a growing number of researchers, I was convinced that autism was a neurodevelopmental disorder that could only be understood by studying children’s minds, brains and behavior. I left mothers out of my early studies of language in children with autism. In doing so, I managed to avoid blaming parents, but I neglected to appreciate the dyadic nature of communication.

Studying the other side of that exchange — the mothers who are interacting with the babies — is critical. After all, communication is a two-way street. And understanding what happens in that interaction may provide clues about how language develops in children with autism and for refining early-intervention strategies for those infants at risk of developing the condition. It might even relieve some parents’ guilt.

In another study published last year, we found that mothers of high-risk infants actually gesture more than usual to their 1-year-old babies, providing rich communication2. Far from concluding that women who have children with autism don’t support their infants’ developmental needs, our work suggested that they use lessons from early behavioral intervention to raise their later-born children.

Criticism of mainstream autism research, especially studies that put the focus on parents, is likely to continue. As long as the science is justifiable, however, scientists should not shy away from studying sensitive topics that have the potential to illuminate autism.

Helen Tager-Flusberg is professor of psychological and brain sciences at Boston University, where she directs the Center for Autism Research Excellence.


References:
  1. Talbott M.R. et al. Autism Res. Epub ahead of print (2015) PubMed
  2. Talbott M.R. et al. J. Autism Dev. Disord. 45, 4-14 (2015) PubMed
  • Dr. Tager-Flusberg,

    Thank you for doing autism research! Also I am sorry about the intemperate remarks that have been said by some. In addition I agree with you that in general controversy and even hurt feelings should not bar a researcher from pursuing a promising avenue of research. I also commend you for bravely opening a dialog on this topic.

    That being said, I do wonder whether another autism study on attachment between mothers and their children will be useful. As I think is evident by now from the medical literature, autism is typically a condition of biochemical dysfunction often with associated autoimmunity. See http://www.ncbi.nlm.nih.gov/pubmed/21651783 and http://www.ncbi.nlm.nih.gov/pubmed/26392128 for example.

    Therefore, it seems to me that it would be much more productive to look at research on autism biochemistry and how to manipulate. Fortunately, there is some exciting and very valuable work being done in these areas. For example see: http://www.ncbi.nlm.nih.gov/pubmed/26889605 and http://www.ncbi.nlm.nih.gov/pubmed/25313065.

    To do these studies well, practitioners who are experienced and exceptionally observant are needed to decide on the types of behavioral testing used and administer the behavioral testing which may validate or invalidate the efficacy of candidate compounds. We need researchers like yourself involved in this kind of research.

    Alternatively if you wish to continue with mother-child studies, might you consider including measurement of biochemical markers such as cytokines or markers of oxidative stress as part of your research? It would be very useful to understand how behavior and behavioral trajectories correlate with these biomarkers, and how maternal biomarkers may be related to biomarkers in the child.

    That being said, if you really want to stay away from biochemistry, there is nothing stopping you from doing more studies of attachment therapy if you can get funding, and if you do this, I hope it proves to be useful.

  • Frank Kelly

    I concur with @seth_bittker:disqus, thank you for your bravery in pursuing such research. As the parent of a child on the spectrum, I would want to know if I or my wife have had challenges in our communication with our child that we need help with.

    If there is a problem I would want to know about it so I could do something about it.

    That said I was relieved to hear that even parents on the spectrum or those with depression are apparently unimpaired in their responses to their children.
    This is great to know and a relief.

    Your research work over the years with ASD children is always much appreciated. Keep going!

  • Planet Autism

    “Too many women still hear from professionals, family and friends that perhaps they did or didn’t do something that caused their child to have autism.”

    The problem is, that there is a blame culture within state services. Many CAMHS are notorious for blaming parents (most particularly mothers) and before even assessing a child for a neurodevelopmental condition will send parents on parenting courses. All professionals who don’t have adequate autism training (which is the vast majority) have the potential to misinterpret and misrepresent autistic children (and parents’) behaviours and the cause for them, especially if they are undiagnosed.

    Parenting courses are worthless to parents of autistic children because the ordinary ‘rules’ don’t apply. As they say, you throw out the rulebook. When the child has PDA subtype, this is even more the case as traditionally accepted support and behaviour management techniques for autistic children don’t work on those with the PDA subtype.

    There is an overzealous and hysterical culture within state services too. There are autistic children, often undiagnosed who are being misdiagnosed with attachment disorder and this not only has obvious potentially devastating consequences for families but condemns an autistic child to lack of appropriate support and likely much worsened outcomes.

    So parents have a real fear, any study seeking to identify environmental issues relating to outcomes for children has the potential to be misused when it is about parents. There is also a real danger of the assumptions that might be made, correlation does not equal causation. Even where the mother is autistic, there is research evidence that they make great parents – but this message is not getting across to professionals.

    There are many autistic mothers who have had their children taken on the basis of misunderstanding and misrepresentation of their autism and discrimination. Is it any wonder parents are on the defensive?

    • little biddy

      Boy I sure know about this! I’ve been blamed on many fronts for my son’s “autism”! I put it into quotes because relatives, friends, acquaintances, colleagues, and state workers involved even still debate that it is even autism. They all have varying opinions and love to argue with one another, but there is one common correlation that we hate and which has caused us to start avoiding people: That WE are to blame, and one of the points these LOVE to debate is “which” parent is “responsible” or which parents’ genes. That doesn’t remove the issues our kid and we deal with, and absolutely NONE of it helps! It only serves to increase my own depression. I wish people would focus LESS on the blame game and instead of also debating what is “best”, they would try to let US talk, or TRY to AGREE on what might help. Most of these interchanges or whispers behind our backs hasn’t done a whit of good, except to most us avoid people and increase our social isolation. I don’t get to do most of the things I used to like to do any more and I can’t hold a job, and a few blame my kid for preventing things THEY would like to do or for taking away their former time with me. It really hurts me, his mom. I have a responsibility to take care of him and try to teach him and I DON’T put that off on others. What hurts the most is not all that, it’s the bitter expression of these who want more time with me, or who feel that he prevents them from doing what they want. One family member has always wanted to travel the country but wants me along, but not necessarily him, or wants a different kid that I can’t just change. Another aging relative wants semi exclusive care or at least much more time with me, but that’s not possible because of “you know who”. I wish they would all shut up, and deal with their own issues with this situation instead of just blaming us for situation. The reality is he’s here and around to stay and we need to GET OVER IT. I find this depressing because I spend way more time with him than anyone else, but the others do a 100 times the amount of complaining that I do. I can’t change the situation, I do my best and try my absolute best to accommodate everyone, but I am a human too and can only do so much. You would think they could at least stop complaining or spewing bitterness, but they don’t and it hurts. One of my best friends hasn’t been around in ages, has no time for us to visit, nor wants to even talk on the phone. We are almost practically entirely socially isolated and it hurts. If I could give up an arm, leg, eye, ear, etc. I would do so in a MINUTE if he were just NORMAL, but I CAN’T! Don’t think I haven’t wished I could do so!

  • Katie Wright

    Most importantly I think this research is just not useful and low priority. It’s so critical researchers not lose touch with consumer priorities.
    My son is one of countless ASD kids who almost died of a seizure last year- no one is studying seizure interventions like Charlotte’s Web (which actually works!) but there are 1,000s of eye gazing studies for early detection, and we did not be 900 of them!
    I am one of thousands of mothers who took her autistic child to the hospital numerous times with recurring PANDAS/ Strep. His complete language loss was tied to chronic illness. This is so common but there are only 5 studies of autism and PANDAS. Yet there are 1,000s of studies of FX and autism although none of the research has delivered any actionable help.
    I really like this researcher but this is not about political correctness. The problem with studying mothers is that it is a waste of time and we learn almost nothing we did not know. Autism is not like child abuse in which parental interaction directly influences cognitive impairment. Would one study mothers of children with diabetes and look for neglect and depression? Oh course not. Autism is so much more than a brain disorder. It is a total body disease of so many and studying my parenting implies that is a problematic factor and most importantly does nothing to help my child.

    Let’s more on to more fruitful research and focus more on helping our kids live better, healthier lives. I would love to see Seth’s research ideas funded. Studying mother child interactions in isolation is not productive. Studying postnatal enviro factors and a mother and child’s immune system, cytokines, ox stress markers is infinitely more useful than studying behavior alone.

    • Katie,
      I completely agree with your thinking and I would like to share some additional thoughts. My email address is sbittker at yahoo dot com, and I hope to hear from you.

    • Ethyl

      Katie Wright: You go girl!
      It would be beautiful if it were that simple, but it isn’t. I remember reading the Empty Fortress and hoping if I changed my son wouldn’t be so severely language impaired anymore. Parents don’t just sit around waiting for science to come up with the answers. That’s a luxury they don’t have.

      I don’t have the medical problems with my son. In reality…there is a reticence among scientists to see the depth of medical needs some kids have. They’d rather obsess on behavior.

    • Planet Autism

      “Most importantly I think this research is just not useful and low priority.”

      What a cruel thing to say. Please read this blog post: https://planetautismblog.wordpress.com/2016/01/22/state-kidnapping-of-the-children-of-autistic-mothers/

      If you were in that situation you would not be so dismissive.

      All failings towards autism families are wrong and should not happen, but when families are wrongly torn apart, there cannot be a research focus more urgent.

      “The problem with studying mothers is that it is a waste of time and we learn almost nothing we did not know.”

      https://imfar.confex.com/imfar/2016/webprogram/Paper22166.html

      See what autistic mothers are going through? Open your eyes – fast.

    • Michelle Sarabia

      I totally get where you are coming from. However, this isn’t research to inform parents. It is to inform all those service providers who still have “look at the mom’s parenting” noxious residue from 20th century nonsense in their heads. This research is important… and should be repeated and further explored… specifically to address systemic issues in struggles to catch professionals up to research-based reality regarding issues like autism.

  • CrimsonWife

    My older daughter had been verbally precocious as a toddler and when my younger daughter (and 3rd child) had a speech & language delay, I got a lot of flak that it was supposedly the result of me ignoring her because I was too busy with my older kids. When in truth, I’d done far MORE language stimulation with her because I was concerned about her developmental delays. My oldest would just soak up language through osmosis and I never had to consciously try to teach her anything. Whereas my youngest needs explicit teaching and lots of repetition. After receiving the autism diagnosis and starting early intervention services, the critics mostly shut up because I had proof that there was a neurological reason for the delay and it wasn’t just that I was a neglectful mom.

    • Katie Wright

      exactly…and that is why I think the subject is not even worth studying. It just perpetuates nonsense that parenting can trigger autism. This is not just not true. It is as silly as continuing to research if the world is round. Studying mothering styles is insulting to our families who work SO hard raising research funds and lobbying Congress to allot more money for ASD research. This research wastes precious resources better spent elsewhere by going done a route that is already settled science and wastes precious resources better spent elsewhere.
      Our kids are often so sick,, suffering from numerous chronic illnesses and their quality of life poor. Let’s focus on the most urgent gaps in autism research.

    • little biddy

      People also have a problem just because one child isn’t like another! My first was totally precocious, highly intelligent, and just graduated near the top of her class. Little brother isn’t like her, so everyone compares the two and surely I am “responsible”! They believe I must have “done something wrong” (one of their FAVORITES is the fact that I “only had two.” and this OFTEN gets put up as the reason for all of our family problems by almost everyone but their Dad–he has in fact often ended up defending me to others who feel I am cursed for this or some other reason, like my past alcoholism.), to produce this situation. My high achieving daughter does have some problems==mostly dealing with the new phase of her life and of course the assumption is I “did something wrong” there too. This annoys the HECK out their Dad, too, who is a PhD scientist and can’t stand people comparing them to him and wondering why his kids aren’t exactly the same or wonder why he married me, since my half of the genes must have produced all of our kids’ “problems” (correct me if I’m wrong, but in NT’s I have seen a lot of problems adjusting to new phases of life, so what’s the deal??). This irritates both of us. Another says we vaccinated our kids, actually the “normal” one has had more vaccines due to the country we taught in a for while, so which way are we going to take that one?? I wish more attention would be spent on how to deal with autism rather than “causes”, since the favorite place to point the finger is always MOM. I am MOM, and personally I am SICK of it! I would say they can either shut up or just avoid me altogether then because some people I come into contact with don’t talk about anything else! Those that I haven’t actively avoided, that is. IF you want to know the real reason for “social isolation”–for me a lot of it has to do with THEIR obsession with my family’s problems…that stem from our son’s problems. It’s as if I had had only one then we “wouldn’t have any problems”–(except then MOST people I know WOULDN’T SHUT UP about how we “could have had more talented children” like my daughter. If you’re guessing I’ve seen my life as a no-win situation. IT’s true. Before I had our son, we heard the stupid, almost bitter complaints about how we had “only one kid!” AD INFINITUM–and yes, I started avoiding those people before I was pregnant with my son, and some only sought me out AFTER finding out I was going to “finally have more kids”. Of course, once those fair-weather friends found out his current problems, they were gone faster than you could say “hokey pokey” AFTER telling me it was all my fault of course! Some people need their own problems I think in order to stay out of everyone else’s!

  • Helen Tager-Flusberg

    As a postscript to this column that I wrote I would like to correct my statement that Leo Kanner proposed the notion of ‘refrigerator mothers.’ Kanner neither coined the term nor subscribed to the hypothesis. Jim Harris and Joe Piven have just published a very important column revisiting the history of this destructive idea, and describing the far more nuanced views that Kanner held: https://spectrumnews.org/opinion/viewpoint/correcting-the-record-leo-kanner-and-the-broad-autism-phenotype/

  • Michelle Sarabia

    Unfortunately, so many of our service systems and individual providers continue to view mothers as central to any problem, rather than looking first for physiological or other factors. My son’s first seven years of life were spent with doctors telling me, as a first-time inexperienced mother, that I was over-worrying and there was nothing seriously wrong. He was colicky, over-eating from the time he was born, and the combination of hypo and hypersensitive sensory issues meant a puzzling mix of restlessness, lack of engagement with many things that everything I knew about child development said he should be doing, and hyperfocus on physical details. I often want to go back in time and slap some pediatricians, diagnosticians, etc. He is now an adult, with a mix of schizophrenia, autism, and severe learning disorders, among other issues. He missed infant, toddler, and early childhood therapies because according to the doctors I was just being a worry-wart helicopter parent fussing over things he was supposedly going to “grow out of”, even while pre-school and public schools both refused to help him and kept complaining to me about his difficulties. It wasn’t until we had a couple of years of notes from teachers, that doctors started to seriously look at him for anything.

    So yes, many parents are extremely defensive, and have a reflexive hostile response even before reading information or knowing what it is about.

    • little biddy

      Read some of my other posts, I have the same issues, except mine isn’t grown up yet.

  • little biddy

    I’ve been blamed on many fronts for my son’s “autism”! I put it into quotes because relatives, friends, acquaintances, colleagues, and state workers involved even still debate that it is even autism. They all have varying opinions and love to argue with one another, but there is one common correlation that we hate and which has caused us to start avoiding people: That WE are to blame, and one of the points these LOVE to debate is “which” parent is “responsible” or which parents’ genes. That doesn’t remove the issues our kid and we deal with, and absolutely NONE of it helps! It only serves to increase my own depression. I wish people would focus LESS on the blame game and instead of also debating what is “best”, they would try to let US talk, or TRY to AGREE on what might help. Most of these interchanges or whispers behind our backs hasn’t done a whit of good, except to most us avoid people and increase our social isolation. I don’t get to do most of the things I used to like to do any more and I can’t hold a job, and a few blame my kid for preventing things THEY would like to do or for taking away their former time with me. It really hurts me, his mom. I have a responsibility to take care of him and try to teach him and I DON’T put that off on others. What hurts the most is not all that, it’s the bitter expression of these who want more time with me, or who feel that he prevents them from doing what they want. One family member has always wanted to travel the country but wants me along, but not necessarily him, or wants a different kid that I can’t just change. Another aging relative wants semi exclusive care or at least much more time with me, but that’s not possible because of “you know who”. I wish they would all shut up, and deal with their own issues with this situation instead of just blaming us for situation. The reality is he’s here and around to stay and we need to GET OVER IT. I find this depressing because I spend way more time with him than anyone else, but the others do a 100 times the amount of complaining that I do. I can’t change the situation, I do my best and try my absolute best to accommodate everyone, but I am a human too and can only do so much. You would think they could at least stop complaining or spewing bitterness, but they don’t and it hurts. One of my best friends hasn’t been around in ages, has no time for us to visit, nor wants to even talk on the phone. We are almost practically entirely socially isolated and it hurts. If I could give up an arm, leg, eye, ear, etc. I would do so in a MINUTE if he were just NORMAL, but I CAN’T! Don’t think I haven’t wished I could do so!

  • Neeny

    I myself have had a child with the features of autism, and new there was more to it and I needed to get answers looking at my own personal family I defiantly believe more research needs to go into parents with kids with autism.

  • Autism Lakeside

    I think this is a very thought provoking article. As a mother of a 3 children, the youngest of which has autism (and I’m also a graduate of child language acquisition), we are very sensitive to being apportioned any kind of blame by academics and health professionals. That said, unnecessary political correctness has no place in science. Research into the environment of the child is of course important and focus on the key caregiver interactions are also valid, if only to help make pediatricians and mothers more aware of the need for rich interactions. However this cannot and should not be allowed to be a central part of research on the holy grail of understanding the ’causes’ of autism. We have simply passed that point of thinking.

    From my point of view I am very pragmatic about my part in the development of my son, let me share the following:

    1. The quieter my son was in a busy family, the less I seeked interaction (until I realised it was a problem and then I was all over it)
    2. Being a mum of 3 babies/preschoolers at the time meant communication is mostly needs and functionality based. Whoever communicates with insistence and loudest will naturally receive the most communication.
    3. I am naturally a quieter mother and do not speak without reason. I am accepting of the fact that whilst this is just how people can be and don’t beat myself up about it, I am jealous of those mothers that talk and babble away for hours with their babies/toddlers.
    4. I had way less attachment issues with my third (with autism) than with the shocking arrival of my first (neurotypical)
    4. If I had listened to the first thoughts of our pediatrician on the above and their skewed view on the mothers role in child development, we would not have made it into Early Intervention before it was too late.

    However additionally and what the pediatrician didnt know or seek to ask was:

    1. The prevalence of autism in my very large wider family is about 1 in 4 or 5.
    2. I absolutely had severe issues with my immune system during that particular pregnancy
    3. i did not take my prenatal vitamins (despite very close inter pregnancies)
    4. After receiving a diagnosis of clinical depression 4 years after his birth, it is now apparent to me that my stress hormones were off the scale during this pregnancy.

    All that to say, conducted and used in the right way, this research is valid, but I would much rather we keep looking at biochemistry and genetics.

  • Amy Thomson Utley

    I am the mother of three daughters, one of which received an Asperger’s diagnosis. I am interested to read this study, mostly because the Asperger’s diagnosis directly connects to language development. Her language not was not only not delayed, she was somewhat advanced, both in acquiring speech and in learning to read and write. Since the DSM decided to “get rid of” this diagnosis, we had to have her diagnosis redefined as high functioning autism. I have found it more and more difficult to find resources that actually apply to my daughter.

    I wonder if the study took into account the fact that younger siblings, by the very definition of being a sibling, grow up with more than just the responses of the mother. My third daughter exhibits many of the same behaviors as my eldest, but socialized more effectively because she learned how to do so from my second daughter who, by the way, shows none of the same symptoms. All three are two years apart, went to the same babysitters, and grew up without very many other friends when they were very little because they played with each other.

    I noticed very early that there was something “different” about my daughter, and she is very much like her father. I understand the curiosity about environmental factors, but I feel like there is an effort to disprove autism and, obviously Asperger’s, as an actual neurological or at least brain-based difference. I think that this may be why there was so much anger and backlash. There is a lot of unspoken blame that parents receive, and I’m not sure this particular study really focuses in on the real issues. If the baby’s problem is that he/she doesn’t pick up on facial cues to begin with, it would be hard to prove that it was the mother’s responses in the first place. Also, it is possible the mother may also be on the spectrum. Perhaps a tweak to the research would help focus in on what we all can do to help instead of pointing out possible causes? It seems counter-productive

  • Patricia Blatt

    I am the mother of a 10 yr old boy who lives with autism along with about 8 other comorbid conditions. He was dx with level 2 severity on the spectrum, close to a level 3 due to extreme bx’s. He is high fuctioning cognitively, low functioning behaviorally. Sensitivity about a mothers role in a childs dx of autism stems from many, many sources. Not only lingering stigma attached to the “refrigerator mom” theory, but also the lack of general understanding from the public at large. These mothers feel severely judged by nearly everyone, including family members. I for one, have an adult son who said to me about this “i just choose to be positive about it.” What does that mean, if i were more positive then my son wouldn’t have autism anymore? Do people not think that mothers of asd children feel hopeful for their children? Even though it has been my experience that these mothers are often the most hopeful people i have met. It is what we hold on to. It is how we make sense of the endless appointments and therapies. But we too occationally feel that twinge of despair and hopelessness. For these mothers, the isolation is profound and depressing. With the rise in asd’s i think research for solutions to the despair and isolation for mothers is key. Thank you for your research and attempts to understand.

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