Women and Autism
Finally Being Recognized
As a woman with autism it has been frustrating to be told, “You can’t have autism; you are female." As a mother with autism, who also has three children with autism (twin boys and a girl), I can tell you that there are differences and similarities. The battle to get my daughter recognized as being like her brothers was difficult, even though I had no trouble, myself, being diagnosed as autistic.
A Little Back Story
My twin sons (who are now adults), were born 12 weeks premature. My oldest daughter, who is autistic, was eight weeks premature. Although I was told that she may have some difficulties, autism was never mentioned. This may be because autism wasn’t being openly talked about for about five years after her birth, but I think it is because she is a girl and little was known about how girls present their autism.
When my sons were born, I heard the word “autism” for the first time before they ever left the hospital. The nurses and doctors told me that they saw signs that they had seen in other baby boys that later were diagnosed with autism.
I brought my tiny babies home and being that I had five small children at home now, I was pretty busy. I went about my days being a mom and doing the best I could. My oldest daughter was “unique"—she did things differently than her younger sister or brother, but similar to her youngest twin brothers, only different. I was told autism was only seen in boys so I blew off any idea that she was autistic .
My twin sons would scream for hours on end pretty much since birth. My neighbors would come over and ask if they could help rock a baby or something. My pediatrician said they screamed so much because they were so premature. My oldest daughter would rock next to me, spin in circles or just jump up and down while her other siblings went about playing with their toys while I tended to the babies.
My twins had regular ct scans to watch for brain problems due to their prematurity. One day the doctor took me aside and told me that the part of the brain that controlled their emotions was not growing, which was why they screamed all the time. He suggested I see a specialist and gave me a card. It was a doctor specializing in autism. By this time it was time to enroll my kids in school so before I got the doctor called, I went about trying to enroll my little ones in school. I got my oldest enrolled with no problem, all five of my children were well behaved, but then another child screamed in laughter. My twins began screaming, crying, throwing themselves on the floor, the behavior I was getting used to when something didn’t go right or was different. By then I had my sixth and last child, in a baby carrier, and I was sitting on the floor with screaming little ones, my oldest daughter was dancing in the hall, getting under foot of other parents trying to enroll their children. My second daughter and first son went about playing with some toys that were in the hallway, ignoring the chaos that was unfolding in my lap, in the hallway, as parents walked past me and stared.
One teacher came out and asked me to leave. I tried to pick up my screaming toddlers, the baby carrier and baby bag, but I could not lift it all. My two that had been playing with toys had confiscated the stroller and was loading up their friends, taking them for ride (safely) down the hall and back. Another woman came out of an office and asked me to bring my children into her office. I was about in tears and thought my kids were going to get kicked out of school before they ever started. Another teacher helped round up my children and soon all of them were neatly packed into a tiny office with a round table filled with soft toys. I felt claustrophobic, but they were happy, except the two that were still screaming. My oldest daughter quickly dove under the table and reached up, grabbing a random toy off the table, was happy as a clam. My new baby had fallen asleep, thankfully. I sat there in fear of what was going to come next.
“How are you?” she softly asked.
There was a soft knock on the door, then an arm reached in, holding a can of Pepsi. The woman whispered that I might want something. I did. My mouth was so dry you could sand a motor boat with it. I popped the can open, knowing none of the kids would hear it because my twins were still screaming. The woman told me to just let them scream on the floor. I felt horrible but was terrified, so I had kicked off my shoes and was rubbing their backs with my feet while I sipped Pepsi and she talked.
She introduced herself, but I will not name her for privacy reasons.
“Have you had your sons tested for autism?” she asked, as she looked me right in the eyes.
“It was mentioned when they were tiny but I have not known how to get them tested…” I trailed off, still wondering what was going on. The Pepsi was started to help calm my nerves. My legs were shaking with pain as I continued to rub their backs with my feet but the boys were slowly calming down.
“Let’s test them, if that is okay. I have some papers for you to sign first.” She handed me an ink pen. “I see some of the signs already; let’s look into this, okay?”
So, my autism journey began. As we went through the testing, I repeatedly said, “I did that, they are just taking after me…” I got diagnosed with autism the same time as them. My daughter that sat so quietly under the table, playing with toys in ways that only she understood, did not.
“It is rare for females to be diagnosed with autism, I doubt your daughter has it too. Do you want to meet Temple Grandin? She has autism, maybe that will explain some things to you.” I met Temple Grandin a couple years later but while working with my sons, I had met myself. My world was changing but my focus had to be on raising my sons in a manner to help them best cope with life, to be productive and functioning to the best of their capacity. My autism will have to wait.
My Sons Screamed A Lot
Basics of Autism
Autism is a developmental disorder affecting many children. Autism affects one in 500 children annually and is thought to be genetic though other factors such as vaccines have been examined as a cause to this mysterious disorder. For most families that find autism to be the cause for their child’s behavior, autism is a devastating diagnosis. There is no cure for autism, only training for those working with the autistic child and hope that a cause and a cure can be found.
Autism is only one of several names under the umbrella of Pervasive Developmental Disorder such as Asperger’s syndrome, Rhett’s syndrome, childhood disintegrative disorder and pdd-nos, or pervasive developmental disorder-not otherwise specified. The diagnosis begins with certain signs or symptoms for a child with autism or any of the other names under the pervasive developmental disorder umbrella.
Basic Symptoms (for boys)
- Repetitive movements such as hand flapping, spinning, rocking
- Delay in speech and motor development
- Absent eye contact
- Unusual body language
- Odd facial expressions or no facial expressions
- Resistant to change, change extremely upsetting
- Upset for odd things, such as mother changed clothes
- Doesn’t like the feel of certain foods, clothing, plants etc.
- Sensitive to light and/or sound
- Doesn’t play with toys like other kids
- May line up toys or food persistently
- May not like certain colors of food
- May not want food to touch on the plate
- May only use a certain bowl, plate, bowl etc.
- May only wear a certain item of clothing or any clothing, such as the case with my sons.
- May not speak or may talk constantly, but never on subject
- Speech may be delayed
- Reading ability may come before speech
- May have higher than average abilities in some areas, lower than average in others
- May have difficulty with anger issues
Children with autism will not develop at the same rate as other children. They may not walk or be very slow to walk and may not play like other children. They may use toys in different ways such as taking a toy car and using it like a screwdriver instead of putting it on the car track, or picking plaster off the wall while holding a crayon instead of coloring on paper or even the wall with crayons. Speech is a problem with autism. Children with autism have difficulty learning to speak and even then the speech may be slurred or hard to understand.
Many children with autism are seen as children with no emotions because they may not express emotions to a person they do not know, the child may or may not bond with a parent and if he or she does, they may not form relationships with other people. Sometimes a child with autism can appear to be very happy, with their symptom being overly giggly as opposed to not showing any emotion.
The child with autism may also have difficulty with normal stages in a growth such as toilet training or using silverware. Behavioral problems may present themselves such as screaming and head banging. Some children with autism like to hear the sound of glass shattering so will break glass to hear the noise. These are some of the most severe symptoms the good news is most symptoms can have a level of improvement with behavior therapy but many symptoms will remain to some extent into adulthood.
Treatment for autism is difficult as each child presents with his or her own set of autistic symptoms and circumstance. Treatment is critical to the growth of the autistic child, and that the parents are very involved with their treatment and growth or at least have a professional they can take the child to. Without treatment autism can be a deteriorating disease .
Although autism is most thought of as a genetic disorder, it is also thought of as a disease since without treatment, the child only gets worse. Studies into autism have found that the child may have a predisposition to autism and something such as premature birth triggers that gene. Some studies have been done into vaccines or mercury but have come back inconclusive.
No Cure, but Help
Children with autism have no cure, but speech therapy, motor skill therapy and behavioral therapy have been found to be very successful in helping a child gain some control over the autism. The child who giggles too much can be taught when to giggle and when not to giggle, or when to smile. With work and dedication the child with autism can learn to toilet train and use silverware, they can learn behavioral control, temper management and also show love for another person. The hope for children with autism is not lost; at the website for the National Autism Association parents and caregivers are given information and help. Parents and caregivers of a child or adult with autism can learn to help a loved one suffering with this devastating diagnosis. All autistic children can have help and although they may not all reach the point of total integration into society; they can have an easier, more fulfilling life.
As a mother with three autistic children, I can say that treatment makes a difference. My sons were so severely autistic I was told there was no hope, they were too autistic. I sought help through the National Autism Association and learned that I could get help and training through the public school system. The public school system directed me to training available to become certified working with autistic children and when I my training was complete; I worked for the public school and some local doctors as the local “professional” on autism. I worked with my children, and they have gone beyond what I as their mother, thought was possible, but as their professional aid, dreamed of.
Females Tend to Mimic Peers
Females Differ in Autism Traits
Now that we have examined the basics on autism in males, let’s look at how females differ and are the same in their autism traits.
- When infants, may not sleep, preferring to stare at the ceiling or wall
- Not look at mobiles or play with their toys the same as other babies
- As toddlers, may progress faster such as speaking and reading
- Not like hair combed
- Be more likely to be called “gifted” in school, not autistic
- Flick their fingers when they touch something
- Rock back and forth, but softly
- Prone to focus deeply on music, the computer, phone, anything to tune out the world around them
- Talk too much but not on subject
- Easily overwhelmed in conversations
- Seem obsessed with make-up or clothing style
- May choose one style of clothes and feel panicked if told to change
- Be prone to eating disorders to fight peer pressure
- Be more aware of how they do not fit in than how they do fit with their peers
- Collectors, may collect many of one type of item, more than average
- Preferred research to socializing
- Fearful of breaking rules
- Favorite place to be may be under a tree or the jungle gym playground equipment
- Fearful of breaking rules yet didn’t understand a lot of them
- Had difficulty understanding why people do what they do
- Very logical, could not understand many jokes or dramatic reactions unless on stage
- Overall odd in comparison to others
- Blunt but not on purpose
- Considered a snob
- Socially awkward, miss social cues all the time
- Told they don’t smile enough or smiled at the wrong time
Girls that are autistic tend to watch their peers more in their younger years, mimicking what they believe is acceptable behavior by the teacher, for example.
Both myself and my daughter were called “painfully shy” but very obedient and cute. We both mimicked our favorite teacher in early school.
Females may come across as aloof, studious or as not caring about studies, depending on who they see as acceptable. As the girls get older, they tend to get bullied if they are not acting the same as other girls, so can act out, or retreat further within themselves.
Unlike boys, girls are not typically seen lining up their food or toys, but may be arranging them by type and color instead. This may not seem as unusual because children are taught to focus on colors and shapes etc…so it may appear she is simply practicing what she was taught. It starts to draw thought when she does this all the time, every time she eats, for example. Girls don’t usually play with toys the same as boys with autism.
For example, my oldest daughter and her sister tried to play with dolls together but my oldest daughter (the one diagnosed later as autistic) wanted to set up scenes and leave the dolls on their own, where my other daughter wanted to interact with the dolls and her sister. I also had this same issue with my own sister. We tried to play together but I never really understood her story lines and she never understood why I played the way I did.
So Much Still to Learn
Much is still being learned about females and autism, but one thing cannot be denied: it is not only seen in males anymore.
Fuzzy Blankets Calm Me
When I am getting overwhelmed or feeling anxious, I curl up in a fuzzy blanket and put on a movie. This helps me to tune out my worries and calm down. I can also be found wrapped in a blanket when writing articles.
© 2017 Cynthianne Neighbors