New Directions in Canine Assisted Therapy for Children: Finding our Lost Girls
There is a child I find myself serving at North Star that I want to profile in this column, someone I never expected to be working with in a primary way; after a decade of finding them among the sisters of the children with autism that I partner with North Star assistance dogs, I have come to understand that girls with autism tend to present differently than the boys we are more familiar with identifying as being on the autism spectrum.
Boys currently make up approximately 80 percent of those diagnosed on the autism spectrum, but this number may be deceivingly high because little girls with autism present differently and are often missed, according to British researcher David Skuse, Ph.D.
Although an autism diagnosis is still relatively rare in girls, a diagnosis of autism on the mild end of the spectrum is even more unusual. Boys outnumber girls with autism by 4 to 1 in terms of being diagnosed with autism; in “high functioning autism” such as Asperger’s used to refer to, the gender ratio is estimated to be 10 to 1.
As researcher John N. Constantino M.D. put it, perhaps doctors are looking at girls through “boy-colored glasses” since there is less research done on girls with mild autism, as there are fewer girls with the diagnosis. In an interview in 2007, Ami Klin Ph.D., director of the Yale Autism Program, said that girls with autism were “research orphans.” The negative spire of ignorance is the culprit here, so common sense would say increased diagnosis would be the answer, but even if you had been able to identify a young girl on the mild end of the autism spectrum by the time she hit her preteen years in the past decade, and even if you had gotten her an Asperger’s label, to a young girl just coming to understand her subtle differences from the norm the social stigma of being on the autism spectrum can hurt her, both internally as well as externally by way of true prejudice and fresh ammunition for bullies to use when they take aim. This label won’t necessarily take care of this young girl’s social and emotional problems, and just might cause her painful new ones.
To compound the problem, even if that young girl had come to accept rather late in the day a label like Asperger’s at such a sensitive time in her life, the day would still have come where Asperger’s would no longer even be a recognized label. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), dropped Asperger’s as a distinct classification. Clearly we as a society are confused about how to even recognize girls on the mild end of the autism spectrum, much less actually meet their needs. These girls are left to suffer, and sometimes not so quietly.
I have long noticed that that many of the sisters of boys diagnosed with autism that I work with have similar social and emotional challenges as their brothers that can and do cause them trouble throughout their own lifespan if their challenges are not recognized and dealt with intelligently, sensitively and appropriately when they are young. Girls on the mild end of the autism spectrum often do very well initially and avoid labeling better than their brothers on the spectrum; they may throw a wild tantrum or two and be on the naïve side, but in general girls with a mild degree of autism tend to present as shy in public and dreamy on the home front; both acceptable states in our society. Think of these little girls as being more internally than externally focused, with a great underlying sensitivity to sensory, social and emotional overload, especially when they are outside their own front door.
A young boy with autism may have more red flags concerning his behavior that refer him for testing; boys also tend to become fixated on a variety of things that clue us in on his being autistic: it may be things such as curtains, toothpaste brands, or train engines, but young girls tend to be fixated more with relationships and such socially acceptable things such as unicorns, dolls or animals. It may not be true spontaneous interactions you see when you watch a little girl on the spectrum playing: the pretend play may well be scripted and perhaps be quite one sided and a tad awkward, but there is still a lot of learning happening during this process and it certainly can give us valuable clues as to how this little girl is developing by watching this type of play.
You cannot understand or treat autism outside a social context, and so even while girls on the mild end of the spectrum may initially present in public or to her peers as agreeable, when these girls get older their social and emotional differences may become increasingly noticeable and make them a target for bullies. To those who may wonder why we don’t want to leave well enough alone here, to leave these quiet young girls unlabeled in the corners they carve out for themselves, this bullying is one important reason we shouldn’t. Forcing them to hide from bullies and pretend to fit in can never be the true answer for these girls.
Tony Atwood is an adjunct Associate Professor at Griffith University in Queensland. He has written a book that won the Teacher’s Choice Award, Exploring Feelings: Anxiety: Cognitive Behaviour Therapy to Manage Anxiety; he has included girls on the spectrum in his research and writing in his book, Asperger’s and Girls (Future Horizons, 2006). Mr. Atwood believes that many girls on the spectrum become so successful at pretending that they only come to the attention of society when a secondary mood disorder emerges.
Most of these unidentified girls on the mild end of the autism spectrum grow up to face increasingly difficult social and emotional environments to navigate, and ironically it is here that their gender again trips them up. Because they get so good at “faking it,” support may not be there for them when they do fail, socially or emotionally. In our society, women are expected to intuit feelings, to put our own needs aside for the sake of others, and to meet the social expectations of those around us, none of which comes easily to a young woman on the autism spectrum. Many young women and girls on the mild end of the spectrum get by on the largess of family and a close mother hen type of friend or two for many years, but as time passes and she is continually challenged socially and emotionally while she tries to achieve the adult milestones that those around her reach with relative ease, these young women often come to society’s attention by way of seeking help for a mood disorder or addiction related event when social and emotional failure becomes just too much to bear.
Dr. Constantino, Professor of Psychiatry and Pediatrics at Washington University in St. Louis, led a research team that looked at the brothers and sisters of children diagnosed with ASD (Autism Spectrum Disorder). Using a screening tool that compares girls to girls, the team found that about 40 percent of the girls with “very high” levels of autistic symptoms had not been diagnosed with ASD. The research suggests that the true gender ratio may be closer to three boys for every two girls, and this leaves us with a troubling task of finding these girls and young woman who have undiagnosed autism.
Where do these unidentified girls on the autism spectrum end up when they grow up undiagnosed? What happens when they hit rather predictable difficulties with such adults tasks as forming and maintaining a primary relationship, parenting a child, or paying the electric bill on time?
I think you can find many of these women on the autism spectrum living alone as adults or still living with their parents much more than average; this can be an uneasy arrangement, as mild communication challenges that lowered social/emotional skills present can create an irrational and overemotional adult who is too old to be sent to her room for a timeout.
Women who are out of their depth with a partner with an unkind heart are also terribly vulnerable. I believe you’ll find many adult women on the autism spectrum in abusive or dysfunctional relationships, as it takes social skills and emotional resiliency to form a healthy adult relationship with a partner: it takes a lot to keep a relationship balanced and healthy in terms of limit setting and communication.
Anxiety can become part of the problem here, or even turn into the main problem. You may have to look for our unidentified girls all grown up in places where they have fashioned for themselves to hide, from us or from their own internal demons. I think you’ll find many young women with a mild degree of autism with eating disorders or developing OCD (Obsessive Compulsive Disorder) as a result of this overwhelming sense of anxiety and depression. I think this is a place where society has great power to help, and I do believe the amount of anxiety that these sensitive girls tend to accumulate the older they get and the more their needs remain unmet is our failure as a civilized society.
These unmet needs don’t sit as quietly as the little girls themselves used to; they roil and churn and confuse: addictions sometimes lure these women to crash upon a very rocky shore by their siren song of temporary relief. Drinking or taking drugs to self-medicate can be a disastrous path for lonely women with high degrees of anxiety and little emotional resilience, for sobering up in a jail cell isn’t conducive to a peaceful state of mind.
Sometimes young women on the spectrum are successful, and this is no real surprise for they have so much to offer us. They tend to be visual, and to be quite talented in the visual arts; they also tend to love animals and children, and they are almost always very kind. The most successful women on the mild end of the autism spectrum usually have a loving and patient family or partner beside them helping to pave the way for them, socially and emotionally. People with autism are a rare minority where they need people who are not on the spectrum to help stitch them to their larger society, as communication difficulties are an intrinsic part of their difference and misunderstandings are a part of their daily lives.
Sometime young women on the spectrum grow up to be wildly successful, move star successful even, such as Daryll Hannah, who recently “came out” as being on the spectrum. Even back then, her success was tempered by the difficulties she had with press junkets and a lingering public perception of her as being cold. We make interpretations all the time about others’ behavior, and often we are wildly off the mark but usually move on uncorrected to live and judge another day.
Perhaps the most famous woman on the autism spectrum is Temple Grandin, a brilliant woman who developed an extraordinary sense of self awareness and understanding of where she fits into the social universe. I met her in person once, at an autism conference with Danny by my side: the three of us stood in an awkward triangle together for a few minutes, and although I clearly had the best eye contact among us, I felt in complete awe to be in the presence of two such amazing minds.
Here is a quote from an interview Temple gave to USC’s excellent site “interacting with autism”:
“One of the main core deficits in autism is you’re not very social. You see, if you look at how brains can develop, a brain can develop to be more cognitive and thinking or a brain can be developed to be more social. I think there’s a big wide variation where it’s just normal personality variation. Then it gets to where it becomes an abnormality. I mean, half of the people in Silicon Valley have some degree of autism. When you think about it, who do you think made the first stone spear? It wasn’t the social yackity-yacks around the campfire, that’s for sure. It was the guy sitting off in the corner figuring out how he could chip this rock and fasten it onto a stick to make a spear.”
(In this scenario I would definitely be one of the yackity-yacks close to the campfire, although to my credit I would also have been the one to begin to domesticate the wolf pups that hung around the edges of the fire for warmth and stray bones, providing evolution a foothold by way of breeding for assistance work with children.)
Sometimes young women on the mild end of the autism spectrum fail. This is very painful for me to even think about, and all the more difficult to fully grasp because it has not been fully recognized by us as a society as yet. Sometimes women on the autism spectrum grow up to kill themselves in the obvious as well as less recognized ways; sometimes they fall into crime or prostitution to support bad habits or good children, and sometimes they even become the enemy when they fail to be able to mother their own child, especially if no support is given or extreme protection is needed, such as with children born into an abusive relationship. Many children are abused by a step father or boyfriend of a woman who has difficulty keeping the wolves at bay.
Setting limits is difficult for a woman on the autism spectrum and the social impact of this difficulty can range from Eleanor Rigby loneliness to a Malfeasant bitterness that can descend upon the sweetest of souls when invitations never materialize. Such accepted female traits in our society such as “fluttering acquiescence” may not be one that comes easily to a woman on the autism spectrum; being unfairly judged on what you might be perceived as lacking as compared to others is a social staple for a girl with mild autism. Whether this judgment comes in the form of teasing, gossiping, or bullying is dependent in large part on the particular teasers, gossipers and bullies that populate this young girl’s world. Recent research conducted by McLennan, Lord & Schopler from the Department of Psychiatry, University of North Carolina, Chapel Hill (Sex differences in higher functioning people with autism. J Autism Dev. Disorder. 1993 Jun;23(2):217-27) suggest that with higher functioning autism, boys have more social communication problems as young children, while girls show more social problems in the teen years and beyond.
Dr. Nichols, author of Girls Growing Up on the Autism Spectrum, said girls with ASD tend to be more anxious and depressed, while the boys with this label are more likely to be active and angry. “Some of the data suggest the girls are stronger at imitating (others) than the boys are. They are also socialized into imitation through doll play and social interactions by nature of their gender,” said Dr. Nichols. She states that by middle school, “mother-hen friends are now looking out for their own social status. Compared to boys, the social world for girls changes much more dramatically. There’s an emphasis on conversing and having a best friend,” she said. “We see a lot of girls for first diagnoses in the preteen years, ages 10 to 13.”
Developing coping skills in our daughters on the autism spectrum is not to only answer here. A layer of society’s protection for these children is in order, I believe, and as children grow into their twenties and beyond parents can and do need to consider themselves safety nets to catch their daughters when they fall, but isn’t this the role of any good parent? Parenting a child with a challenge is familiar work, if unusually exhausting. In the past we used to think in terms of nature or nurture when trying to understand children and differences in their development, but these two concepts standing alone can’t tell us what we are beginning to find out: it’s the interaction of the two, the interplay of these forces, that create a child’s temperament, just as surely as it is so for the pups I breed for the children I serve.
Canine behavioral genetics and the human kind both deal with qualities that can be passed on through the genes, which has information we can use to help pave the way to a good life for a child who may face a genetic challenge, but I have come to recognize just how important the child’s environments are as children on the spectrum grow up to be vulnerable adults.
Assistance dogs can help girls who face genetically based challenges, even the invisible kind such that girls tend to suffer from that we are still in the process of discovering; the placement I want to highlight today is with a teenage girl named Mary and her North Star dog, a lovely and sensitive golden retriever named Esmee. They had a very different first year together than most of the children I serve, and instead of the many training bills I normally pay for a North Star team in training, I paid very few for Esmee, as Mary came to drop out of the high school that was so anxiety provoking for her in the year we placed Esmee with her, and she became too paralyzed with anxiety to leave her home comfortably. This social paralysis can be heartbreaking to witness or endure, and our first goal for Esmee and Mary was to help restore Mary’s sense of safety and connection. Gradually Mary became emotionally strong enough to return to an alternative high school, from which she hopes to graduate this spring.
Here Esmee was a bridge to the warm and welcoming things outside Mary’s front door, just as she is a touchstone to comfort on the inside. Pragmatically speaking, Esmee has the power to turn any environment therapeutic for Mary, for she’ll be surrounded by people that will rise to the challenge of taking to the person on the other end of the leash…
Not all challenges are visible in our universe. Assistance dogs offer a child who struggles with a challenge not yet fully understood, recognized or treated a bridge to the warm social acceptance they feel such terror they won’t receive…
What comes next is up to you, if you ever find yourself lucky enough to be admiring Esmee up close; if you do, please stay for a moment to greet the young woman with warmth and compassion that holds the other end of the leash…
Simon Baron-Cohen and his colleagues at Cambridge’s Autism Research center designed a test to see if you fall on the autism spectrum. Remember, this is only a simple test and does not measure how many coping skills you have developed over the years or how much support you have created around yourself; in keeping with the core message of this column, please keep in mind that it’s not about where you fall on the autism spectrum, it’s about how well you are supported in your life, as both nature as well as nurture are important factors in anyone’s life.