Girls and Autism

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. 

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 aphasia, sensory 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!