In 1943, the ghost of Sigmund Freud still stalked the hallways of psychiatry. So when Austrian-born child psychiatrist Leo Kanner wrote the first paper flagging a condition he tentatively called “early infantile autism,” he took care to probe the parents of his young patients too.

“In the whole group, there are very few really warmhearted fathers and mothers,” Kanner wrote in the study that launched scientific inquiry into what we now call Autism Spectrum Disorder (ASD). “The question arises whether or to what extent this fact has contributed to the condition of the children.”

Six years later, bolstered by attention from the scientific community, Kanner had an answer.

“Maternal lack of genuine warmth is often conspicuous in the first visit to the clinic. As they come up the stairs, the child trails forlornly behind the mother, who does not bother to look back.”

The children, he concluded, “were kept neatly in refrigerators which did not defrost.”

Mothers, from the first birth pangs of autism research, took on a fraught role. Branded as “refrigerator moms,” for decades they were blamed for their children’s developmental delays, which include obsessive interests, repetitive behaviours, sensitivity to sensory stimuli and, most strikingly, social and communicative impairments. The stigma is diminished — we now know genetics plays a significant role in autism, not faulty child-rearing — but still stings.







As a mother of three children who have been diagnosed with ASD, Leah Dubé navigates a landscape familiar to most parents of special-needs kids, a maze of doctors, special educators, and social service providers.

As a mother recently diagnosed with ASD herself, however, Dubé is in uncharted territory. That much was clear one minute and 54 seconds into our first conversation, when she casually lobbed a grenade into the midst of everything the autism community holds dear.

“I do not have a maternal bond to my kids,” she said.

“For me to bring them to daycare and leave right away for the very first time, it’s like opening and shutting a door.”

Dismantling that single statement goes to the heart of a community overlooked by science and misunderstood by society at large. For those who bother to listen to them, mothers with autism raise a raft of fascinating questions about what the disorder looks like in girls and women, how gender stereotypes can muddy science, and what it means to be a good mother.

Autism is diverse, and mothers with ASD don’t all share the same traits. Of the six interviewed for this story, some said they, too, could be perceived as “cold.” Others said affection came easily. Dubé keeps a compulsive schedule, while another mom often forgets her appointments.

But for a group of women who have never met, they share remarkable similarities.

All were diagnosed late in life. Most overcame destructive childhood misdiagnoses, and only stumbled onto the correct diagnosis after raising a child who also had autism. Marriage had been a battle. All were diagnosed with Asperger syndrome, a high-functioning type of autism, and are highly educated.

And every one of them said, forcefully, that the scant resources for adult women with autism peter out completely when it comes to the topic of motherhood. None has ever found a book devoted to ASD mothers, nor a scrap of published research. Counselling services are non-existent, they said.

“For a mom’s perspective, raising children and dealing with their own issues along with their children?” Dubé said. “There’s nothing. There’s nothing at all.”

For decades, autism has been a boys’ club. Eight of the 11 children in Kanner’s original 1943 paper were boys. Today, the most commonly cited ratio is 4 to1 — four males diagnosed with ASD for every female. Asperger’s is tilted even more steeply at 10 to 1.

Canadian scientists have led the way in uncovering some of the biological mechanisms behind this gender imbalance.

Stephen Scherer, director of the Centre for Applied Genomics at Toronto’s Hospital for Sick Children, co-led an international study that discovered the X chromosomes of a small number of men with autism have a deleted patch in a genetic region that seems to code for neurological functioning. Males carry one X and one Y chromosome, Scherer explains. If their X is compromised, they’re left vulnerable. But because women carry two X chromosomes, they have a backup for that missing patch of genes.

Scherer co-led another study, published this year, which found another patch of genetic deletions in a small group of men and women, but not on the sex chromosomes. The males had autism, but the female carriers were mysteriously unaffected.

But biology may not explain everything.

“I think we have underestimated the number of women,” says Susan Bryson, who holds the Craig Chair in Autism Research at the IWK Health Centre and Dalhousie University in Halifax. While much of the evidence is anecdotal, Bryson is one voice in a chorus of autism researchers who believe that females are chronically under-diagnosed.

Part of the problem, Bryson says, is that girls seem to “present” differently than boys. The autistic stereotype is Dustin Hoffman’s Rain Man: a math savant with obsessive interests in, say, train schedules.

The autistic moms who spoke to the Star are science and math whizzes too. But their intense interests don’t fit the traditional male mould. One is deeply, unusually engaged in her Christian faith. Others connected profoundly with animals, or with music, studying the same piece for months on end.

Bryson believes that gender stereotypes compound the invisibility of autistic girls.

“We still expect girls to be mannerly and to help,” she says, and girls “are good at learning the scripts.” While men can get away with being brusque or geeky, women are more likely to conform. One autistic woman told Bryson that she studies the exaggerated emotional reactions in soap operas for guidance.

The result, says Bryson, is that developmentally delayed women often appear “normal” on the surface, but struggle silently. Toronto researchers profiled 60 women with autism and found more than half met the clinical criteria for depression and three-quarters for anxiety disorder, according to findings presented at an autism symposium last month.

In March, Bryson and a team of Canadian scientists published the results of an ongoing study into the siblings of autistic children. The team recruited 319 “high-risk” infants: younger brothers and sisters of kids who had been diagnosed with ASD. At age 3, the siblings and a control group of kids with no family history of the disorder were assessed for autism by expert clinicians “blind” to assessments from previous visits.

The result: from the high-risk group, 57 boys were diagnosed with ASD compared to 28 girls, a ratio of around 2:1. In other words, when a net was set up to catch all autistic children, regardless of gender, there were more than twice as many girls as the accepted ratio would predict.

Genetics may play a part in the study’s high number of ASD girls. But real-world clinicians, the authors suggest, may also be looking harder for autism in boys than girls. Other researchers have noted that doctors are using a set of diagnostic criteria that is typically male, rather than gender-neutral. Some studies have even suggested that anorexia is somehow related to autism, since women with eating disorders score higher than healthy women on tests that measure ASD traits.

Funding that could answer some of these questions is just beginning to flow. In September, the Yale School of Medicine was awarded $15 million for a five-year study on how girls with autism differ from boys, how they can be better diagnosed, and what kind of treatments might help. In Britain, the National Autistic Society is taking part in an EU-funded, two-year project that will examine issues faced by girls.

For many adult women, the research will be too little, too late.

Colleen Pohl-Weary, a Burlington mother of two, spent her adult life thinking she had borderline personality disorder traits. “It’s one of the diagnoses you least want to get,” says the former social worker.

Then her daughter began struggling in preschool. Two psychological assessments concluded there was nothing wrong with the child, Pohl-Weary says. But the worried mom began researching online, and read an article by a prominent autism researcher. He wrote about how girls with Asperger’s are often missed, and how borderline personality disorder is a common misdiagnosis.

“I was like, ‘Oh my god.’ That’s what’s going on with both of us,” says Pohl-Weary. Two years ago, Pohl-Weary, now 45, and her daughter, now 8, were diagnosed with Asperger’s within a week of each other.

Pohl-Weary is heartened that her daughter is getting some extra support at school and has begun to make friends. But she looks back at her own past of depression, drug abuse and self-harm with bitterness.

“All of that resulted from feelings of blame and not understanding what was wrong with me,” she says.

“If I had known that it wasn’t that I was a really crappy person, pathologically unwell with some mystery psychological thing — if I had known it was just wiring, and needing to learn to cope with the wiring and getting support — I think it would have made a huge difference.”

Busy now with two special-needs children (her son was diagnosed with a rare genetic disorder that causes speech delays and immune deficiency), Pohl-Weary doubts she will be able to achieve her dreams.

“I basically don’t even know if I’m ever going to have a life really that has any value to me.”

Dubé and Pohl-Weary have never met, but their stories share many common threads. After Dubé’s son Tristen, now 8, was diagnosed with Asperger’s, Dubé began to suspect that the depression and anxiety she had been diagnosed with as a teenager was not the whole story.

Tristen had outsized temper tantrums, for example. If something set him off, he would tear his entire room apart. “I clearly remember doing that,” says Dubé.

Her son struggled in all but the simplest social settings. “He’ll have one friend over to play. But when you bring in that third friend . . . all of a sudden, he has a hard time splitting his attention between the two,” Dubé says. “I had that my whole life.”

Dubé’s struggles continued into adulthood.

An ace at math and science and long interested in animals, Dubé went to college to become a veterinary technician — veterinarians spent too much time with people, she discovered. But an internship proved challenging. Her supervisor sent the school a letter saying Dubé had no social skills and should try another occupation.

“I remember crying and thinking, ‘What?’ I didn’t know that. You don’t know. You don’t notice you’re doing these things.”

Dubé took a course on client relations. She studied how actors interacted with each other in movies and on TV.

“Now, my problem is that I’ve overcome it so much and I’m too forward — when I do talk to people I stare at them in the eye too much,” she says, although during lengthy interviews Dubé’s manner showed nothing out of the ordinary.

When she did graduate and find a job, she excelled at it, in part because of her peculiarities. The anguish of pet owners had no effect on her.

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“I was very good with doing euthanasia. I felt for the animals, but I didn’t feel for the clients. It was very easy for me to do a procedure and talk to the client and tell them everything and then leave the room. Some of the girls we worked with, they just couldn’t.”

Dubé was finally diagnosed with Asperger’s last year. She is now a full-time mother to Tristen, Kaine, 11, and Axana, 3. All have been diagnosed with ASD. Charles, her husband, is a millwright. The couple have been together for 22 years, and while they say there have been many challenges, they speak about each other with quiet respect and affection.

Motherhood, on the other hand, proved a minefield for Dubé. When Kaine was a toddler and Dubé was pregnant with Tristen, she remembers watching a TV show about mothers giving birth. They gushed and cried and carried on in a way she didn’t understand.

“I don’t have that. That’s not even in a crevice down there waiting to wake up,” Dubé says. She felt like a freak.

Real-life acquaintances reinforced that impression. When one of Dubé’s children skinned a knee, Dubé would skip the usual cooing and coddling and move straight to cleaning and Band-Aids: her immediate reaction was logical, not emotional. Mothers at the playground told her it was abnormal.

“You hear it so much, you start to think something’s wrong.”

Rudy Simone, a New York mother diagnosed with Asperger’s late in life and author of the book Aspergirls, felt similarly policed while raising her daughter, who is now college-age.

Simone’s sensory issues meant she struggled with the breastfeeding and constant touching. “I felt very conflicted. I knew I loved her, but I couldn’t stand certain things.”

She recalls once when her daughter, then 2, started playing with a little boy on a long train trip.

“They both looked like cherubs. They were two beautiful children. And the boy’s grandmother looked at me and said, ‘Don’t you love being a mother?’ I gave her an honest answer. I said no.”

The woman slid away, startled.

“You would have thought I had just said I was a Nazi or something,” says Simone. But, she adds: “She didn’t let me finish. I loved my daughter. Absolutely. Did I love being a mother? No, it was very hard for me. It was very, very hard.”

She felt that society “had lied to her about motherhood.” And she found so-called experts basically useless. Simone’s Aspergirls and a couple of other books have chapters about motherhood on the spectrum. But Simone has never seen a book exclusively on mothers with ASD.

Like many mothers, Dubé’s confidence in her parenting sometimes crumbles. Asked whether she was worried readers might judge her for saying she did not having a “maternal bond” with her kids, she suddenly looked panicked. “Can you word it differently?”

But to hear her describe it, the ‘bond’ is not the part she lacks — it’s the ‘maternal.’ Dubé wonders if people would judge her parenting style if she were a dad.

She has come to realize that the logical, methodical — yes, cold — way that she parents can also be a boon.

With three children on the spectrum, it helps her fight for social services and medical attention: she lacks the social awareness that would make her realize she is irritating the person on the other end of the phone.

“That’s probably why I can barrel through, because I don’t find anybody intimidating.”

Charles provides the cuddling and warmth that his wife often feels uncomfortable with. But she is the one with unique insight into the triggers that send her children into meltdown mode.

She loves her children as much as her neighbours do, she says — it just looks different.

“It may not be the normal way, but it’s mine.”

Leo Kanner was by no means the principal perpetrator of the refrigerator mother theory; for many, that dubious distinction belongs to Bruno Bettelheim, another Austrian-born, American-settled specialist in childhood autism.

Bettelheim, a Holocaust survivor, famously compared the experience of autistic children to that of concentration camp prisoners. Both, he said, suffered under the watch of people who wished they did not exist.

But while Bettelheim never publicly renounced his position, Kanner did try to correct some of the harm. In an obituary published after his death in 1981, Kanner’s colleagues noted that the man who is credited with the term “refrigerator mother” told an autism conference in 1971 that the blame implied by this term was wrong.

Yet some have begun to wonder whether the substance of Kanner’s observations was correct. Was Kanner, without the benefit of genetic science, simply observing parents who were autistic themselves?

For Dubé, it seems likely.

“I’m positive. My three children are positive. It’s genetic, it’s there,” she says. “So yeah, cold mother syndrome? I believe that mother probably had symptoms. And the spectrum is so wide, she may not have been severe.”

In a 1949 paper, Kanner described the mother of a young autistic boy, a patient. She was deeply interested in birdwatching.

“She ‘roamed around’ and made notes, referring to her excursions as ‘observation trips,’ which she identified both by dates and ordinal numbers. She married a Harvard graduate chemist whose description of himself as an introvert was offered with a bland smile.”

“I am more interested in my birds than I am in people,” she told Kanner.

The mother professed that she was “not very attached to children,” and that she and her husband had conceived the child out of duty. But her main complaint was not lack of empathy: quite the reverse.

“It upsets me when he cries,” she said of her young son. “Maybe I should have a sympathetic nerve cut.”

kallen@thestar.ca