Autism Spectrum Disorder is finally coming to the forefront of people’s minds and acceptance. There is a ton of information out there on symptoms, but those symptoms seem very specific to boys. Along the journey to our daughter’s diagnosis, I desperately looked for information online of autism symptoms in girls. Surprising was how little there was on how autism affect girls in comparison to boys. Through out experiences, I have gathered quiet a bit of information. Surprising, was the finding out how often autism diagnosis in girls are overlooked and misdiagnosed.
In 4 months, our son received an autism diagnosis at 23 months old. We noticed symptoms very early on. When he started regressing in speech at 19 months, it was enough to send us straight to the mercy autism center for a diagnosis at 23 month. He should a ton of the typical warning signs. Regression in speech, obsession with trains and order, spinning, inconsistent eye contact, and so on. Our daughters journey has been quiet different and a lot harder to get her the exact same diagnosis at age 8.
Wait to See Approach from Multiple Doctors
(You can skip to the bottom for a list of symptoms)
When Bean (daughter’s nickname) was 2, she was noted with a speech delay. We worked with first steps and that ended at age 3. At age 5, we knew there was something extremely different with her from our other two daughters. Our pediatrician at the time gave us a referral to a pediatric psychiatrist. She was given a “general mood disorder” diagnosis and we were told we would have to wait and see what it was as she got older. She was started on risperidone, half of the smallest dose possible. There were some small improvement, but just not enough. We began the hunt for another doctor that would see such young patients.
After many referrals, we finally found one that we liked. This doctor was more understanding and we absolutely loved him! He continued with the current medication, but added an additional one to try to balance the depression symptoms. She stayed on those medication for about 2 years. Due to an insurance change, we wound up changing doctors once again. The new doctor prescribed her a different mood stabilizer as well as an antidepressant. She had just turned 7, and it seemed we were having to adjust the doses monthly as nothing was working.
“This was not the way we wanted our experience in a church based school to go.”
Another “ah ha moment” for her was when we switched to a private school. We wanted to give our children a faith-based education, and the opportunity for advancement. Unfortunately, this is where we really started to see her struggle. She loved learning about God as well as art class, but that was about it. She hated music, her grades were going down in most subjects, and she had a horrible time with maintaining friendships. We brought our concerns to the principle there, but felt like we were hitting brick wall. This was not the way we wanted our experience in a church based school to go. We worked through the school year and it used the summer to work through and make decisions for upcoming schooling.
“to gain the special education resources we felt she needed”
We went to the doctor’s office right before summer break began. As many of her symptoms were not drastically changed by the medication increases, We decided to take her off all medications. This was to try to see exactly what her symptoms were without medication. Though a hard choice, this was by far the best choice we could have made. The doctors helped us wean her off the medications, and we just started watching. As the medication wore off, we were in for a whirl wind! The meltdowns were extreme, and symptoms starting show, but the depression wasn’t as evident. We soon determined she was more depressed because of the lack of help as opposed to actually depression.
The new school year was fast approaching. We made the decision to put the girls back in public school in order to try to gain the special education resources we felt she needed. After enrolling them, I emailed her teacher to prepare her for what to expect. I was absolutely amazed at how well the teacher responded. She was so sweet. After school had started, I requested an IEP. Schools are already tough when it comes to getting them to give an IEP, but we ran into an additional problem. They wanted to wait until after September reviews to evaluate for an IEP. In the mean time, they set Bean up with the school counselor and accommodations in the class room, basically a 504 plan without the actual plan. After September reviews, Bean was approved for extra help in reading.
“It took a total a total of 2 schools, 2 pediatricians, 3 psychiatrist, and 4 psychologist over almost 4 years to get her an autism diagnosis. It took one pediatrician and a confirmation with an autism specialist 3 months with our son.”
During this time her doctor had moved offices. After speaking with Crider, a large behavioral health office, we decided to take her to a new doctor once again and try different resources. We had just received her brothers diagnosis, and I began realizing some of her symptoms were much like her brothers. She saw several intake doctors, started seeing a psychologist weekly, and made an appointment with a psychiatrist. Within 2 months at this new doctors office, we had a diagnosis. It took a total a total of 2 schools, 2 pediatricians, 3 psychiatrist, and 4 psychologist over almost 4 years to get her an autism diagnosis. It took one pediatrician and a confirmation with an autism specialist 3 months with our son.
“autism symptoms, others seem more like an exaggerated amount of “normal little girl” play and preferences.”
There still isn’t a ton of information out there on autism symptoms in girls. There is still a ton of misdiagnosis out there. After several repetitive ADHD diagnosis, my niece was also recently diagnosed with autism. During the evaluation, she scored more than enough points on the chart to be diagnosed autistic. The psychologist testing her was debating between crediting some of those points to ADHD or autism, and the diagnosis was left up to the neurologist who observed symptoms in office. It blows my mind just how hard getting a girl diagnosed with autism can truly be!
“What Are autism symptoms in girls?”
Autism is a field that is constantly learning. One day, I believe there will be a ton of information out there that explains how autism affects a female brain. As a parent with two children diagnosed with autism, the one thing I can offer is to share my experiences. Today, I am sharing her symptoms to hopefully give light to other parents searching for those same answers. If you believe your child may have autism, or any symptoms that are not “normal”, please contact your doctor. Only a licensed professional can provide an autism diagnosis.
Autism Symptoms in Girls
This is a list of our daughter (Bean’s) autism symptoms.
Every child is different, and so is every case of autism.
Intense emotions All of her emotions are so extreme! When she is happy, its overwhelmingly happy. If the pencil she likes breaks she not just sad, shes extremely upset and you would think someone ran over her dog. all of her emotions, no matter which are so intense.
Speech delay She had a speech delay (no regression) at 2 years old. She still has a lisp and has troubles with r and l sounds that are in the middle of the word.
Sensory-When it comes to touch, she has to have very soft clothing with no tags. When it comes to noise, she is quiet the opposite of my son with autism. Overwhelming noise and sight actually makes her hyper. Rarely will those cause a meltdown like emotionally & social situations. Instead, she starts twirling, jumping, running, bouncing, and speaking extremely loud for the situation.
Social & Emotional Immaturity-
She is socially and emotionally several years behind her biological age. She prefers to play with kids 3-4 years younger than her. Her play with toys also resemble that of a child much younger.
Empathy/Sympathy –She doesn’t understand others emotions. We also have a very hard time with her expressing her own emotions as well understanding proper emotions vs situation. This is something therapy is helping, but does lead to a lot of meltdowns! When playing with her siblings, most arguments come from her not understanding what they are saying or doing.
Sleep Issues-She has always had some problems with sleeping. Even when she was around one or so, she rarely could get to sleep on her own or at a reasonable time. We have to use melatonin to help her go to sleep. Without it, she could easily stay up all night long.
Anxiety-Her anxiety can be quiet bad at times. This is a separate diagnosis as well, but a lot of it stems from not understanding things. Tasks were often completely ignored by her, simply because of the anxiety of doing them wrong.
Twirling-She is constantly spinning around. I didn’t think much of it when she was little, because she was a little girls twirling around. I didn’t realize that this was more than the “normal”
Clumsy-She has always been clumsy. Bumps and bruises. We always thought that she was just tiny and clumsy. Occasionally doctors would ask questions about the amount, but no one every had suggestions to offer.
Poor Muscle Tone-Catching a ball isn’t possible. She can’t run far. She constantly complains of her legs being tired even when walking through a store.
Problems Playing with Others-Bean has a major problem with maintaining friendships. The most common issue we come across is her being “bossy” and “controlling.”
Little Parent-She doesn’t understand relationships and tries to act like a parent to older siblings as well as adults. Even when speaking to adults, she does not speak as if she is a child.
Can’t Let Go-This is a big one. No matter how small the issue may be to us, if she feel she has been wronged she cannot let it go, even after a solution has been given. This also includes not being able to understand when something isn’t an issue that involves her.
Best Friend Issues-This is where we have a hard time understanding that not only can we have more than one friend, but our friends can also have other friends. Often times, she has come home from school crying that someone won’t play with her. After getting to the bottom of it, most times it’s because someone else was also playing with them and she didn’t have the friend to herself
Inconsistent Eye Contact- This was one that even her Dad didn’t notice. She as adapted well without early intervention, but struggles with keeping eye contact. Most times, she will make eye contact briefly once and rarely again in the remainder of a conversation. I only began to notice it after my sons diagnosis, but the psychiatrist noticed it immediately.
Intensity of Interests-This is where things get hard. Most of her interests are similar to other girls her age, however the intensity in those interest is much more. She loves tiny puppy dolls, but she has a collection of over 100 and knows every detail about every one of them. Some of her interest are unconventional though. She also has an obsession with collected empty toilet paper rolls (to use for crafts, but never does, just collects) as well as pine cones. She even crafts habitats for the tiny pine-cones.
Coping Skills-Unexpected transitions and a lack of proper coping skills is a real problem. There is a lot of frustration when she feels she does not have enough time to finish what she wants. This is not based on actual time, but perceived time.
Nature Focused-She relates to nature more than other people. She would rather talk to any animal than a person. Her interest in the outdoors in very intense and very knowledgeable.
Learning Disability-She struggles greatly in reading and some in math. All other subjects she excels in. Art is her main joy and is extremely creative. Not all children with autism have a learning disability. Not all children with a learning disability have autism. However, they can some times go hand in hand.
Conversations-Bean struggles greatly with conversations. She does talk a lot now, more than most. However, when she initiates a conversation, she tends to start mid though or mid sentence. She has a very hard time starting a conversation, which in return gives her the appearance of being shy.
Disclaimer: The views and opinions stated in this blog are my own. I am only a parent who is on the same journey, not a doctor. If you believe your child may have autism, or any symptoms that are not “normal”, please contact your doctor. Only a licensed professional can provide an autism diagnosis.