We know now that boys aren’t the only ones who have autism spectrum disorder (ASD). As the science advances and we learn more and more about autism, boys are being diagnosed in greater numbers, and receiving needed services, accommodations, and understanding.
But what about their sisters?
We know that autism often runs in families, but even with this knowledge, the sisters of autistic boys, who show characteristics of autism themselves, are not being identified at the same rate as their brothers.
Why is this?
There are several possible reasons. Often, girls are misunderstood and misdiagnosed, so that they miss out on the services their brothers receive.
Autistic girls are frequently misunderstood.
When a little boy flaps his hands, we think autism. When his little sister flutters her fingers, we say she’s pretending to be a little bird, or that her hands are butterflies.
A boy overreacts to noises, lights, or smells, and we think about sensory processing issues. With a girl, she’s just sensitive, a little “Princess and the Pea.”
When a boy doesn’t talk much, he gets speech therapy. When he has trouble interacting with other children, he gets social skills training. His sister is called shy or bashful. She gets no services.
Sometimes when a younger sister engages in the same mannerisms or stims (self-stimulatory behaviors) that her autistic brother exhibits, we suppose that she is imitating him. While that may be the case in some instances, it deserves a closer look. Let’s say big brother flaps his hands repetitively, and so does little sister. Imitation, or independent stimming? We need to look at the surrounding circumstances of her stimming. Does she approach her brother, try to catch his eye, and flap along with him as a shared playful moment, whether he responds or not? Or does she flap her hands even when he is not there, perhaps when she is distressed, or excited about something. If she flapsher hands on her own, not only in his presence, and if she does so repetitively and often, rather than getting bored and moving on to playing with dolls or other typical activity, it is probably not imitation.
It’s up to us to look more closely so that we can understand how and why little sister is engaging in behaviors that are associated with autism.
While her older brother receives his diagnosis of ASD in preschool, little sister may go through a number of related diagnoses on the road to being diagnosed with autism. These may include:
Speech-Language Delay, when she does not learn to use language in a typical manner on time.
Attention-Deficit Hyperactivity Disorder (ADHD) often the Inattentive Type, when she is easily distracted by lights or sifting sand, or she has trouble shifting her attention to transition from one thing to another.
Obsessive-Compulsive Disorder (OCD) when she becomes overly focused on a particular passion to the exclusion of most other interests.
Anxiety, when she has no clue how to act in different social situations
Depression, when she realizes that the other girls her age seem to be “in the know” about how to make friends, and she didn’t get the memo.
She may legitimately meet diagnostic criteria for many other conditions such as these, but at some point, it is important to step back and look at the bigger picture. Are all of her combined diagnoses actually symptoms of ASD?
If this is true, why didn’t she get diagnosed in preschool, as her brother did?
Often, assessment teams have a subtle bias toward identifying ASD in boys because of the data showing a historical predominance of autism in boys rather than girls.
Sometimes the girls themselves have become experts at masking, imitating and pretending to be like the other girls in order to fly under the radar andescape notice.
Many autistic behaviors just look different in girls. For example, a boy makes long lines of toy cars, and a girl arranges her dolls in a pleasing display in her dollhouse and just looks at them rather than playing with them. A boy repetitively spins the tiny wheels on his cars, while his sister repetitively opens and closes the dollhouse doors or windows. He flaps his hands, but his sister realized at a young age that most people don’t flap their hands, and they want her to stop and have “quiet hands.” Rather than flapping, she may substitute a subtler stim that is undetectable, such as tensing certain muscles in a specific way or order. No one can see that every time the car passes a yellow car on the road, she must curl her toes and blink three times, but this is a repetitive behavior. Her brother might avoid eye contact, while she taught herself to look at a person’s eyebrows or nose. She may force herself, with effort, to look right at a person’s eyeballs no matter how weird it feels to her, because she knows people expect it. All the while, she may be counting silently to herself, 3 seconds of looking at the right eye, 3 seconds of looking away, 3 seconds of looking at the left eye, and so on. Unfortunately, while maintaining this eye contact, she does not hear or understand a word that is being said to her.
Because she exhibits the same behaviors associated with the diagnostic criteria for ASD, but in a different or difficult to detect way, she remains undiagnosed.
The problem with being misunderstood and misdiagnosed is that the sisters on the spectrum miss out on a lot of help which is provided to their brothers.
Without understanding about her autism, she misses out on accommodations that are offered to her brother. Parents, teachers, and peers may be impatient with her, assuming she “knows better” and is being purposefully problematic when she struggles socially.
Without a proper diagnosis, she misses out on services that are provided to her brother, such as speech therapy, social skills training, special classes in school, and one-on-one tutoring when needed.
In 1776, Abigail Adams wrote to her husband, John Adams, to say, “Remember the ladies.”
Today, we must say, “Remember the sisters on the spectrum,” and do what we can to understand them fully, diagnose them properly, and not let them miss out on everything which is provided to their brothers. They deserve no less.