Where are the girls with autism?  With more than 1 in 59 children having autism you rarely hear about girls with autism!  I often hear about the prevalence of boys with autism but is that a true fact, that there are more boys with autism, or is it the skewing of data?  Why are girls with autism missed?  One of the biggest reasons why girls are missed is because they are known to mask their symptoms and clinicians believe that the medical definition of autism is gender neutral with social ability to be more diagnostic of autism.  Due to the girls masking their symptoms they are at higher risk for sensory issues, anxiety, depression, emotional exhaustion, suicidal thoughts, behavior issues, and psychiatric hospitalization. 

What are some of the reason why girls may or may not be identified with Autism?

Some researchers have suggested there is a distinct presentation of autism in girls and that fact does not match well with the current, male-based conception of autism. One of the “symptoms” of girls with autism is their ability to mask or camouflage their disability with better executive functioning control and better social skills.  This is actually a disadvantage for girls as it delays the diagnosis of autism and many children suffer effects from the “masking” which includes exhaustion, meltdowns after school, anxiety, and depression and contributes to the under-identification of females with autism. 

 

When parents report repetitive and restricted behavior in girls with autism, it was less likely girls would receive an autism versus boys. In contrast, higher overall levels of parent-reported emotional and behavioral problems increase the probability of an autism diagnosis in girls. 
 
Verbal ability (nonverbal, phrase and fluent speech) plays a role in girls receiving an autism diagnosis. Women and girls with autism with phrase/fluent speech had lower cognitive, adaptive, and social abilities than males. Females with phrase/fluent speech had similar or better adaptive and social abilities than males while females who were nonverbal had similar cognitive, adaptive, and social abilities as males. 

There are g
ender differences in the social motivation and friendship experiences of adolescent children with autism relative to those without autism who were all educated within special education settings. Girls with autism showed similar social motivation and friendship quality to girls without autism along with having better pragmatic language skills than boys with autism. Boys with autism reported having both qualitatively different friendships and less motivation for social contact relative to boys without autism and to girls with and without autism. Semi-structured interviews with the children confirmed these findings, with one exception: autistic girls reported high levels of relational aggression within their friendships, suggesting that girls on the autism spectrum, in particular, may struggle with identifying and dealing with conflict in their social lives.

Mom’s Experiences Raising Girls With Autism

Girls who are on the autism spectrum who are not intellectually delayed and are fluent are a rarity in the world of autism with a diagnosis rate of about one girl to every six boys. In a study by Navot et al, mothers who are raising a daughter with autism experience skepticism and disbelief from others that their daughter has autism.  Part of this skepticism could be due to girls with autism having the ability to mask their symptoms, they tend to display less severe symptoms than males, and they tend to rely less on ritualized routines and stereotyped mannerisms allowing them to blend in with their peer group.  Girls with autism tend to have the same kinds of interests as their peers (horses, animals, and literature) but it is the quality and intensity of their interests that are a sign of their autism.  Girls also tend to be more passive than boys and are interested in collecting information on people versus keep busy with projects like boys with autism. With the general lack of information on girls with autism, it can be hard for moms to feel confident if their daughter has autism, even when diagnosed by a professional when others are questioning that diagnosis. 

Mothers experienced a variety of issues once their daughter received their autism diagnosis: 
  • Disbelief from others: The girl was too social and chatty or that autism is only for boys
  • Lack of Information: Mothers reported a general lack of information on girls with autism including scientific information in regards to girls with autism.  
  • Increasing Social Demands: Social demands for girls increase significantly as they move into late childhood and mothers felt they needed to play a role in helping their child navigate those social demands
  • Puberty and Hygiene: Girls with autism often have difficulties accepting the changes to their bodies including the onset of menstruation.  Mothers often had to assist their daughter with these transitions and how to practice hygiene
  • Sexuality and Vulnerability:  There is a great concern by mothers on their daughter’s ability to have a romantic relationship and to be able to identify a predator and protect their safety.
  • Worried About the Future:  Mother’s expressed concern that they worry about their daughter’s future ability to understand complex social interactions that are needed for romantic relationships along with being able to live and work as a functionally independent adult with the possibility/ability to have and care for children.
The impact of Autism on the relationship of Mother and Daughter:
  • Guilt and Grief Due to a Late Diagnosis: Mothers often felt guilt and grief from the late diagnosis of their daughter’s autism due to their child losing services during the delay.   
  • Expectations of a Close Relationship: Many of the mothers had an early expectation to have a close bond with their daughter but that was not fulfilled.
  • Early Expectation versus Reality: With the autism, diagnosis mothers saw their role in the relationship change from their expectation of being close to being a protector and guide.  Some of the mothers experienced a sense of incompetence and helplessness in being able to fulfill their ideal of a mother for their daughter with autism.
  • Different Quality of the Mother-Daughter Relationship: Most mothers described a painful adjustment of their expectations for their relationship with their daughter after their child received an autism diagnosis but gained an overall positive transformation of their relationship due to their greater understanding of their daughter’s autism. 
Though mothers reported a sense of exclusion from the neurotypical parents and children along with those who have boys with autism.  Mother’s of girls with autism found several challenges including: skepticism and delayed diagnosis, disbelief from others, lack of information about girls with ASD, higher social demands in adolescence, puberty challenges around hygiene, disappointment about physical appearance, vulnerability in relationships and worries about future functioning. The mother-daughter relationship started with an early expectation of a close and intimate relationship that then underwent a transformation, which challenged maternal competence, reshaped expectations and created a different bond between mother and daughter. These challenges to the mother-daughter relationship highlight the lack of information out there to help women cope with the unique challenges of being a mother to a girl with autism along with being a female with autism. 

My Experience Raising a Girl with Autism

Being a mom to surviving quadruplets presented several unique challenges including raising a daughter with autism.  My daughter, Margaret, is Baby A out of the set of surviving quadruplets.  The quadruplets were born 13 weeks premature (27 weeks) and Margaret was a micro-preemie weighing in at a tiny 1 lb 9oz!  I understood my children were micro-preemies and would possibly experience problems with their development but I was not prepared for all that happened.

Joseph, Baby D, was my most medically complex child and needed a lot of help and intervention.  My focus for the first year of my children’s lives was on him and making sure he did not pass away like his sister.  I knew Margaret was behind on her milestones but did not think too much about it as Early Intervention and all the children’s specialists were telling me they were only behind because they were micro-preemies and that they would be fine.

By the time the children got to be a year old, Margaret and her other brother, James, were talking. After a couple of months, I noticed James was starting to string words together to express ideas while Margaret could only label things.  I could point to something and she would say what it was but she could not seem to give me any other information.  I also noticed she was not stringing any of her words together.

By the time she was two, she still was not walking, she was not talking in intelligible sentences of any sort. This was also the same time I had experienced some of what the moms in the study discussed which is no one believed them when they said something was wrong.  I was ignored by the doctors, I was ignored by the specialists, I was ignored by the therapists, I was ignored by Early Intervention, my own family questioned me and my husband’s family was starting to suspect I had Munchausen by proxy because my children couldn’t possibly have as many issues going on as I was explaining to them.  My kids were too “normal!”

The video is right after her second birthday and you can hear she is babbling with meaning and you can kinda make out some words.  Little did I know she was about to have an explosion of language.  She would learn to speak in whole sentences by the time she was three.  Again though, I noticed an issue.  James was outpacing Margaret in language which is odd as girls are better talkers and Margaret was speaking in sentences but she was only repeating the sentences she heard spoken from all her favorite shows like Blue’s Clues, Ni Hao Kai-Lan, SuperWhy, Word World, Signing Time, and other shows. I could even name the shows since I watched them too!

I was fortunate, at this point, to run into another mom with special needs children at a seminar.  We talked for a bit after the seminar and I told her about the odd and quirky behaviors my daughter had of always being in motion, that she loved to run around in a circle and wave her hands, how she did not really speak to express herself, how she was missing her developmental milestones, how she would run around on her tippy-toes, how she HATED loud noises, how she did NOT like being held and cuddled. That mom; that stranger, gave me one of the greatest gifts that can be given; knowledge!  SHE was the one who mentioned to me my daughter might have autism!  Autism?  Margaret could have autism?  All I knew of autism was a low-functioning child banging their head on a well or Rain Man.  All the images I had ever seen of autism on TV were of boys or men.  This was something my daughter might have too?

It was with that bit of information that changed everything as I started researching autism online.  As I read that autism is a spectrum and I was reading about what are considered autistic behaviors I found much of the information did fit my daughter!  So I turned my attention back to Early Intervention as she was about to age-out of EI at three years old.  I remember asking the support coordinator that was coming to my house did she not notice my child had possible autism?  She told me it was not her job to say anything and that I had filled out the ADOS when they came to my house and it did not show her has possibly having autism. I asked to see the testing since EI showed up at my tiny house with 3 small children with EIGHT staff (3 evaluators, 3 therapists and 2 interns) asking my husband and I to fill out all the paperwork.  It was chaotic and since I was the primary caregiver I, alone, should have filled out any screeners like the ADOS.

When we went back to look at the paperwork my husband had filled out the form.  I asked to fill it out instead since I was the primary caregiver.  They agreed.  When I filled out the ADOS it was determined she was at-risk for autism and she was sent to evaluation about a month before she turned three.  At that evaluation, I was told my daughter was right on the bubble of having autism but she was too social and she could speak in sentences so they did not think she had autism. Again, these are things echoed in the study about mothers with daughters who have autism. I too hit a roadblock but I did not let that deter me!

I went to a local FEAT meeting and ran into another stranger at the time, a person I would consider a warrior mom, and she said a lot of interesting things at the meeting! Once again I ran down a stranger after a meeting!  LOL  We spoke and she had so many interesting things to say concerning autism. She mentioned I needed to get a medical diagnosis for my children and that FEAT offered a local scholarship to pay for the evaluation (sadly, they no longer offer this).

I was able to get my children evaluated, including my daughter, and it was found she did fit the medical diagnosis of autism as defined by the DSM IV (at the time; now there is the DSM V).  Margaret does fit some of the reasons why a girl with autism may be diagnosed like lower intellectual functioning, lower adaptive skills, and issues with executive functioning (ADHD).  With the autism diagnosis, I went to get more testing on Margaret because I believe that autism is a list of symptoms and that a child can display autism-like symptoms for a LOT of reasons so I got more testing done on my daughter.  She was later diagnosed as having diffuse white matter brain injury along with hypoxic-ischemic encephalopathy (HIE) with a hole in her right frontal lobe from a stroke that was never detected in the NICU.  Margaret also has been medically diagnosed with aphasiasensory processing disorder (SPD), and attention-deficit/hyperactivity disorder (ADHD) which are common co-occurring conditions of autism.

Now Margaret is 11 years old. She has a rehabilitation goal to cook simple meals for herself.  She can successfully fry an egg!  She is also learning how to use the bus system and to navigate her way around on public transportation because I do not think she will ever be able to drive safely. Margaret was always attracted to water but she was TERRIFIED to swim; however, she has overcome her fear and is now a very proficient swimmer!  She recently has developed more tolerance to loud noises with music therapy.

Margaret has a RICH and IMAGINATIVE world!  She has Margaretville where she has all her imaginary friends.  At any given time the inhabitants range from 197 to 248. She is never truly alone with her imaginary friends.  I used to worry about her imaginary world, but her neuropsychologist said it is her way to rehearse social interactions and feeling.  We were told as long as she realizes that her imaginary friends are not truly real, and they are not telling her to do bad things, or she is blaming the bad things she is doing on her imaginary friends then she is fine.  My husband and I are fine with her imaginary world and we love to watch her express herself in her imaginary world!  She loves to play a math professor at Margaretville Preparatory Academy or Margaretville College even though she has severe dyscalculia (specific learning disability in math).  She will watch YouTube videos on calculus so she can copy the math formulas!  We are trying to direct her imagination into a book but Margaret also has dysgraphia (specific learning disability in a written expression).  Now we have moved to work with assistive technology (voice recorder) so she can carry the recorder and record her fantastical stories.

Like the moms in the Navot study, I do not know what the future may hold for my children all of whom have been diagnosed with autism.  James, the highest functioning of the surviving quads, we have let him know he may have to help take care of his brother and sister when my husband and I are gone.  I do not know if Margaret will be able to live independently, if she will get married, and if she will be able to take care of children.  We already work on teaching her the skills she will need as a wife and mother.  We are working on capturing her stories so she can hopefully one day publish her works.  I do not know what tomorrow may bring but I do know I will do all I can to give Margaret the skills she needs to be an independent adult who is healthy and happy with a vocation she will enjoy.  That is the goal for my children and each day we work toward that goal!

 

I hope you have found this post helpful!  Please make sure to click on all the links in the post to see the reference material that was used to write the post.  Parents, in particular, moms, since they seem to bear the brunt of criticism by others, if your instinct says there is something wrong; follow it!  Don’t let others deter you!  Educate yourself!  Fight to get answers!

You are welcome to join us on Facebook for more discussion on Autism in the IEP/504 Assistance group if you need help with public schools.  We have a Homeschooling Special (Needs) Kids group for those that homeschool their child with a disability, and Special Needs Parenting Support & Advice group for anyone who is a caregiver to a person with a disability. I hope to see you there!

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