An autism mom shares advice for raising a daughter on the spectrum, told from her own family’s perspective.
It’s been four years since my daughter Chloe was diagnosed with autism. It was a dreary March day and I remember it like it was yesterday. We lived on an Air Force base in rural California and at that time early intervention sent a psychologist to your house to do the evaluation; looking back, it seems a bit unconventional.
The psychologist spent a total of two hours with Chloe, and then another hour or so writing a report. He handed it to me and said: “You have a long road ahead of you, but it will get better.” I cried as I said goodbye, shook his hand, and closed the door. This is when our journey on the spectrum began…
The beginning of a new journey
It was one of the hardest days of my life and I never want to relive those intense feelings. However, there was one thing he was right about; it does get better! It took a lot of research, advocacy, therapy, early intervention, and school, but we are in a good place now.
There is no instruction manual for how to proceed after diagnosis day, and I learned quickly that having a daughter on the spectrum can present additional challenges and obstacles. So many professionals are used to working with boys. Maybe this is because boys are four times more likely to be diagnosed with ASD. Maybe it is because girls often go undiagnosed and “fall through the cracks” because they present so differently than boys.
Whatever the reason, it seems there is much more clinical research pertaining to boys with autism. Looking for specific literature about girls on the spectrum can be quite challenging. Often, what I found wasn’t very helpful to me as a first-time mom with a newly diagnosed child.
Here are a few things I have learned over the last four years that I wish I knew in the beginning.
Take advantage of early intervention
Early intervention is critical, but be aware that different approaches work for different children. We were blessed with a wonderful speech therapist who came to our home once a week. She explained that a lot of her male clients didn’t play with the toys she brought, however, Chloe loved to play with toys for short periods of time. Therefore, she followed Chloe’s lead and did play-based therapy.
A lot of reciprocal play is speech-based, and what better way to learn new words than through play? I learned that a lot of girls on the spectrum are social and enjoy engaging with others for a period of time. This does not make them “less autistic”, but it can make diagnosis harder because they don’t check all the social/emotional boxes during testing.
Supporting her journey through school
My daughter started public school a few months after her third birthday. The school district did their own assessment, created her Individualized Education Program (IEP), and then placed her in a special needs 3K program. School psychologists perform their own assessments and therefore a child has a medical diagnosis and report and separate educational ones. After a few months in full-time 3K, Chloe began to speak.
Her speech therapist was very impressed, regardless, there was very little communication coming home about what she was doing in speech therapy at school. Again, I learned that girls are more likely to be overshadowed, so I had to advocate for continued speech therapy and monthly reports.
Speak up when your child’s IEP isn’t followed through
We moved states after 3K and Chloe qualified for 4K, but her IEP was not carried over like it should have been. This happens all too often, especially with children who do not display behaviour issues at school. An IEP is a legally binding document and must be followed or rewritten by the incoming school district. If you relocate and don’t feel like your child’s needs are being addressed you are entitled to call an IEP meeting at any time.
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Be your child’s advocate
As Chloe got older and entered first grade, the academic rigor increased and she began to fall behind. I had to advocate for additional reading testing in order for her to receive services from a reading interventionist. These services are not just offered in most schools, parents have to request them. Once you ask for help, data is collected for weeks or even months before the service is provided, so it can be a very slow process. Keeping your own log of emails, assessments, and any communication with the teachers, is critical when advocating for additional services.
The impact of masking
Girls on the spectrum can be experts at masking. Masking is a social phenomenon where children learn, practice, and perform certain behaviors and suppress others in order to appear more neurotypical. This can cause increased anxiety in children and can be very exhausting.
Chloe used to meltdown after school and we realized it was because she was overwhelmed and burnt out from masking all day. She needed time to decompress and let her guard down and be her authentic self. Masking is one reason girls are often diagnosed later or not diagnosed at all.
Be aware of your child’s state of being
Today, one of our biggest challenges is emotional regulation. The moment Chloe wakes up, depending on her demeanor, I can usually predict what kind of day we will have. Some days she is calm and consistent in her emotional responses to things going on around her. Other times the slightest frustration or deviation from her routine can lead to a monumental meltdown. Once she is in a full-blown meltdown mode it is really hard to communicate or get through to her.
Dysregulation is a challenge but, as she gets older and more mature, I have hope she will be able to self-regulate more effectively. Her room is her safe space and we make sure she feels safe and secure. We talk her through those big feelings the best we know how. Currently, Chloe masks and never has meltdowns outside of the home. It is challenging to get help for an issue that never happens outside of our home. Masking everywhere but at home is common in girls.
Be aware of hyperfixation
Hyperfixation is something new that we are navigating. Fixation is essentially being completely immersed in something and unable to engage in other activities. For a lot of children on the spectrum, this can be a movie, show, tablet game, or a recurring thought. These fixations are random and can last hours, days, or even weeks. Usually, it will be a movie that she will want to watch over and over day after day. Other times it will be a tablet game she finds that causes her joy but also immense anxiety.
We can go weeks with zero issues with hyperfixation and she will be calm and content. She doesn’t hyperfixate on things at school, which is another way she masks out in the world. She saves her fixations for home life where she feels safe and secure.
Encourage positive attitudes
Building confidence and positive self-talk is one of our current goals. Positive self-talk is demonstrated in shows and books, and I try to utilize the things Chloe is interested in to teach her these skills. I remind her that she is smart every day when she may be frustrated with schoolwork. I always tell her I am proud of her after a task no matter how small it may have been. Before school, I remind her how kind she is and what a great friend she is. My hope is that she will see these positive traits and characteristics within herself and they will help foster confidence and high self-esteem.
Girls with autism present a number of complexities that are often overlooked or not studied in depth. As girls age and progress, help and services can be scarce and hard to secure. Their needs are unique and not as discernable as boys, but just as critical to long-term success and happiness.
What I have learned the last few years of parenting a daughter with autism is to keep advocating, and don’t let someone tell you what your daughter needs or does not need. You know your child best. Teach her to use her voice and ask for help when she needs it. There is no shame in asking for help, no matter what age or stage of life you are in. Don’t back down when things get tough. After all, our girls deserve to have the right tools and resources to help them become the best version of themselves.
This article was featured in Issue 123 – Autism in girls