Whenever I write or talk about autistic girls, there is a very strong response from the female autistic community. Girls get diagnosed later than boys for many reasons, which are addressed in my previous post on girls. Many of them only get their diagnosis or discover their autistic identity through self-diagnosis or an extended process of getting a formal diagnosis in adulthood. This is more common for girls who have at least average intelligence, strong verbal skills, and no behavioral problems. Girls who have more glaring challenges get identified earlier.
If you are a parent of an autistic girl, your daughter's autism is likely going to look different than what is described in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). Some of the qualities of autistic girls I have also described in my previous post. What you might encounter is that if you tell people that your daughter is autistic, they will not believe you. More importantly, your daughter's teachers and other school professionals might have a hard time seeing her challenges and her need for supports. The flip side of that is that without interventions and support, she is not likely to develop some important skills that will help her do better as she grows up to become a teenager, young adult and beyond.
Luckily, there are some good resources that you can use to learn more about autism in girls. Depending on where you live, you might be able to find professionals who have expertise in autistic girls. There is a growing number of books and on-line resources that are practical and helpful. Below, I am offering some suggestions on how to go about learning about your daughter's autism and anticipate and address the challenges that girls have.
Learn about masking, or camouflage, and keep an eye on when your daughter is faking her competence. Many girls will observe other girls around them and copy their behaviors, mannerisms, interests, etc. Always look beyond your daughter's superficial ability to make conversation and answer questions. Is she really understanding what you are saying, or is she just nodding her head? If she is using some snappy, age-appropriate phrases, do they sound like her own, or do they sound rehearsed? Does she change her interaction style depending on which girl she is friends with, copying the style of whoever her current best friend is? If she is able to make friends, does she maintain them? Does she manage her friendships (i.e. requests playdates, makes plans), or do you need to do it for her? Does she lose friends quickly? Is she an equal participant in a friendship, or is she always a follower? Does she get taken advantage of in friendships?
If your daughter's school does not recognize her struggles because she masks, keep a log of the instances when you notice her struggles. Ask the school to collect data on your daughter's social behaviors at school. If your daughter has anxiety (many autistic girls do), ask the school to provide supports and teach coping skills. Anxiety in autism can show in atypical ways, such as argumentativeness, repetitive questions, increased stimming or self-injurious behaviors, increased rigidity, and increased need for control. Keep an eye out for the unusual indicators of anxiety that a professional not closely familiar with autism might not recognize.
Your daughter might seem to have strong verbal skills, be talkative, and chatty. But is she able to stay on topic and take turns in a conversation? Is her thinking flexible and logical? Does she seem to understand people's emotions, intentions, hidden thoughts, and agendas? Is she able to negotiate and speak up for herself? Does she understand humor and figurative language?
When she reads, does she only remember the stated details of the plot or can she understand the reasons behind the characters' actions and the subtext of their interactions? All these challenges are common and need explicit teaching and support.
Does your daughter make connections between the things she has learned or experienced before and her new experiences? Does she take the information she has learned from different sources and put it together to make an independent conclusion? Developing a "large picture," integrated understanding in any area of life can be very challenging for autistic persons, including girls.
Your girl will need help with friendships, especially as she gets into later elementary, middle and high school. Girls' relationships are based on discussions of feelings and experiences, as well as discussing peers and social events in their lives. These conversations can be very confusing for an autistic girl who does not have a complete grasp of the complexity of her peers' social relationships, and might not be interested in these discussions. Your girl might also be very vulnerable to any feedback and comments that she gets from peers. She might have trouble figuring out how to maintain relationships by reaching out and responding when someone texts/messages her. There can be a lot of anxiety about the social aspects of the school. Your daughter might be able to make friends but unable to keep them. She needs to know about relational aggression, gossiping, proper boundaries, and what it means to be a good friend.
Teach your girl to speak up for herself. Teach her how to say "No" appropriately, how to state her distress and discomfort, and how to ask for what she needs. For example, many girls need to ask for more processing time and can learn to say things like, "Let me think about this for a moment." "Please stop," "I don't like this," "You are being rude" are additional examples of scripts that could help your daughter.
Your girl might need help figuring out grooming and dressing as appropriate for her age and group of peers. Some of grooming and dressing issues are driven by sensory challenges. Some are driven by not being able to understand what looks are considered OK within her peer group, and the implications of not conforming to the general expectations. It is OK not to conform, but in autistic girls, this kind of non-conformity can come from a lack of understanding rather than a conscious decision.
Your girl might have difficulties understanding issues of privacy at all ages. What topics can and cannot be discussed and with whom, distinguishing gossip from a harmless conversation, confidentiality, secrets, and social media boundaries need to be taught explicitly, gradually, and repeatedly.
Teach your girl a very clear understanding of romantic and sexual relationships. Girls on the spectrum tend to be socially naive and vulnerable and not have good judgment. They are three times as likely to be sexually abused as their typically developing peers. Because they often do not have opportunities to discuss romantic relationships with other girls, they can get their ideas from social media, movies, TV shows and other unrealistic sources. It is very important to teach girls the values, realistic expectations, roles, boundaries, sexual cues and signals, and safety issues in relationships.
Teach your daughter about her body functions using real, and not made up or childish, words. Teach your girl about appropriate and inappropriate touch, physical boundaries and personal space. Think about health and sexual education for your daughter. This aspect of life can be challenging for girls on the spectrum. Create a plan for teaching your daughter about sexuality, sex, and sexual health and safety.
At all ages, your girl will be working extra hard to do what is expected of a child her age. Life-long, your daughter will need to use self-regulation and stress-reduction strategies to manage her well-being. You can help her by introducing her to different possible activities, such as yoga, meditation, working out, listening to music, doodling, etc., so that she can figure out which strategies that work best for her. Remember that anything you teach your girl needs to be very clear and explicit. You will need to have the same consistent and clear conversation many times.
All autistic girls need to have opportunities to learn about the issues above. They should be addressed both at home and at school through an IEP. What you teach and address with your daughter should be based on her age. How you teach her should be based on her cognitive ability and processing style.
My professional experience
SPARK webinar by Kathy Koenig, MSN, director of the Initiative for Girls and Women with Autism Spectrum Disorder and associate research scientist at the Yale Child Study Center
Presentations by Sarah Hendrickx
Laura Hull, K. V. Petrides, Carrie Allison, Paula Smith, Simon Baron-Cohen, Meng-Chuan Lai, & William Mandy. “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, August 2017, Volume 47, Issue 8, pp 2519–2534.
Ohlsson Gotby V, Lichtenstein P, Långström N, Pettersson E. Childhood neurodevelopmental disorders and risk of coercive sexual victimization in childhood and adolescence - a population-based prospective twin study. Journal of Child Psychology and Psychiatry. 2018 Sep;59(9):957-965.
Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen and Teenage Years. Shana Nichols, Gina Marie Moravcik, and Samara Pulver Tetenbaum. Jessica Kingsley Publishers, 2009
Girls and Autism: Educational, Family and Personal Perspectives. Barry Carpenter, Francesca Happé and Jo Egerton. Routledge, 2019.