By Jane Strauss
Most resources available for parents of autistic children come from psychologists, educators, and doctors, offering a narrow and technical approach to autism. Sincerely, Your Autistic Child, edited by Emily Paige Ballou, Sharon daVanport, and Morénike Giwa Onaiwu, represents an authentic resource for parents written by autistic people themselves. Contributors reflect on what they have learned while growing up on the autism spectrum and how parents can avoid common mistakes and overcome challenges while raising their child. For Disability Pride Month, we’re sharing insights from contributor Jane Strauss’s essay.
One of the things that many parents seem to be unhappy about when their child is labeled “Autistic” is this: “But they will not have play dates.” Friendship, “socializing,” and human interaction are seen as central to our very humanity. Females often fly under the radar for being labeled on the autism spectrum because their social development is different from that of males, generally resulting in more social orientation, better imitation skills at a younger age, and earlier speech, of whatever kind, than their male counterparts.
In modern society—where doing things in groups seems to have become the norm—parent education, daycare, and early childhood programs result in children being put into groups at ever-younger ages. The groupification of society results in challenges for any person who has sensory issues or does not like change. And those in charge of such programs, in my experience, are not very good at dealing with such folk, no matter how young. I still remember the extreme confusion of staff at our local “Early Childhood Family Education” program where my eldest daughter spent the entire time I was in the parent group screaming instead of interacting and exploring. The only time she did not scream was if the room she was in had a fan or a similar rotating object, which I suspect she used as a stim.
This being the case, and as in most modern societies where females are held to a higher standard of social behavior than males, girls on the spectrum are even more likely to be pushed socially than boys—if they are even identified. In addition, the huge amount of energy it takes to behave in a “social butterfly” manner is often ignored or overlooked. Especially if it has not been difficult for Mom to make friends, easily interact, or read social cues, her daughters seem ever more alien when they do not adopt those behaviors easily or naturally. Sometimes Mom has had challenges making friends but has nonetheless muddled through. She may or may not see herself in her daughter. And often those on the spectrum become chronic targets for bullies, even when they have not been labeled, or are not considered disabled enough for their quirks to “count.”
It is no accident that Autistic girls are more often labeled with depression or eating disorders than with their real neurodivergent natures. When, from early childhood, you live out of sync with social norms and expectations, it’s easy to feel as if you are alien, wrong, and bad. In such a situation, one would have to be catatonic not to be at least a little depressed.
As an Autistic woman who struggled through over five decades before being properly identified, and who learned, through trial and error, about friends, friendship, what they are, and what they are not, there are a number of things I wish that my parents had known and had been able to teach me. These include how to make friends, how to tell if people really are friends, how to deal with bullies and bullying (as I have learned that often institutions don’t do this effectively), and that it is okay not to live in herds. The one thing my parents tried to teach and seem to have done a reasonably good job of is Shakespeare’s old statement: “This above all, to thine own self be true.”
What would I suggest that parents know or do? Here you go . . . and there is no “whole body listening” or “theory of mind” involved in any of them.
First, you might wish to take a long, hard look at yourself if your support systems seem inadequate and you are struggling. Autism does run in families, so far as we know. Until recently, many females skated under the radar, and you just might be one of them. Getting support for yourself can be and is, in the long run, better for your children, whichever gender they may be. And as you learn to cope, you will be a better role model for your child.
Second, realize that your daughter is an individual with her own strengths and weaknesses, and that she is not a smaller version of you. No, really. She may well be introverted and dislike being in large groups. The stress of dealing with noise, motion, and even flickering lights can result in an inability to cope at all and obvious withdrawal. Or, she may seem to do well, until she is at home, where she explodes. Remember, stress can cause a delayed response, bursting out once she is in a safe place.
If large groups seem to result in stress, put those off and preferentially deal with small groups. Yes, Virginia, you can have play dates for your child, they just may be more low-key than you thought they “should” be. An hour or less interacting with a single child while the moms have coffee is perfectly fine as a play date.
A piece of old research I wish parents knew about is that kids on the spectrum are often more comfortable with playmates chronologically younger than themselves. That does make sense, if you look at the spectrum as a developmental delay relative to the mythic norms. Delay does not mean never developing; it does mean doing so more slowly than usual. This may change the nature of play dates, but your child’s time playing with a child two or three years younger than herself is still interaction, and may be more beneficial to both than pushing them to interact in a group of age mates.
All of my own children showed at least traits of if not full-blown autism, four of them in the years when sensory issues were emerging as a thing and before the Diagnostic and Statistical Manual of Mental Disorders (DSM) categories for autism (apart from cognitive impairment) even existed. Our family’s first response to this was to avoid large, group childcare when childcare was needed. We joked that we had managed to find the smallest existing licensed daycare in the entire city that did not include a nanny at home. In a group of four to five, our kids thrived. Once they reached preschool age, again, small groups of fewer than ten were the norm for us. All were in the mainstream, with the exception of the one who narrowly qualified for early intervention after being found “too hyper” to be acceptable for a Waldorf preschool in which her older sister fit in well.
I strongly recommend that in the early years, children not be separated out from the broad range of others, and that their deficits not be emphasized, although limiting group size is usually helpful. The best goal of early intervention, properly executed, is to identify barriers to growth and find ways of getting around them. It is not to separate children with challenges or differences from others. It is not to emphasize the negative characteristics, and it is not to make those children the “other.” Doing so, in my experience, results in bullying, depression, isolation, and lifelong stress.
Third, I wish parents knew about the option to teach their children at home or at least to look for small learning environments in which their children’s challenges will not be held against them. My daughters were all delayed in their motor skills. The one who completed kindergarten was treated as though she were “not quite bright” because she performed poorly at all the gross and fine motor skills tests that the schools thought were mandatory to pass at five years of age. Expectations for her were low, and I had to constantly fight the schools and their assumptions, despite her lacking a label. Her ability to learn improved immensely once I brought her home for learning, and the other children were not put in school until they had completed at least several years at home. As a home educating family, we were able to have somewhat more control over who the children spent time with and under what circumstances and arrange for them to meet a wide variety of people of different ages. We went on field trips, met with other homeschoolers, and did volunteer work; 4H, religious school, summer camp programs, community education, park programs, and art classes rounded out learning opportunities.
Our family then put all the children in a very small non-public (as it happened, religious) school in which no class was larger than twelve students. They thrived there, and from that base continued on in carefully selected public options for secondary school, with three of them placed in a small learning environment of the “open” type, where creativity and individual quirks were valued, and one in a highly structured academic program. All developed friendships in those schools, through meeting others with like interests, and they all learned to advocate for themselves when they did encounter bullies. All have since continued in post-secondary education, pursuing their respective passions.
About the Author
Jane Strauss, a woman of Middle Eastern origin living in Minnesota for over forty years, lived her life on the spectrum without Portfolio (aka diagnosis) until the age of fifty-two. In the interim, she gained several college and professional degrees and worked in nonprofits, advocacy, law, education, and as a stay-at-home mom to five kids (all likely on the spectrum), and as a home educator. She has been in two long-term intimate relationships and spends her time as a photographer, writer, and home educator, with forays into research, professional presentations, and legal practice. She recently began using her Autistic superpowers of pattern identification, persistence, problem solving, and scripting to work as a Census Bureau field representative.