Halloween will be 4 years since our youngest daughter was diagnosed with infantile autism. 4 years!! It seems like we have lived an entire lifetime since. There are moments I still get angry about getting dealt with the unexpected life and there are times I am completely at peace with it.
I mean, the ‘white-picket-fenced-happily-ever-after’ really doesn’t exist anyways, does it? (But no one ever prepares you for that!!)
I get fired up when I tell our story and how it took us 4 years to get Sahara diagnosed; she was non-verbal and catatonic at the time… and we noticed symptoms at 5 months!! Sure we had some denial, but we also kept asking professionals what was wrong! A mother just knows!! Why didn’t ‘they’ listen to my concerns? I often note that we were told many times, “Autism is a boys disorder… it can’t be that.”
I am here today to say… AUTISM AFFECTS GIRLS too!!
As we mucked forward in her treatment and advocacy, we started to note markers in our older daughter as well. But she was fully verbal, quirky at times, but nonetheless, definitely not autistic, right? In fact, had I not been engrossed in the world of autism, the quirkiness and challenges would have likely fallen off the radar as well.
We have been asking educators to help us figure out what was going on with Emily too… for years she has struggled academically, socially, and emotionally. I often associate it with the effects of being a sibling to a child w infantile autism. Life hasn’t always been easy.
But 2 weeks ago the diagnosis came. I expected it.. yes, was even prepared this time. Sahara’s diagnosis hit me like a ton of bricks!! I was crushed for days… maybe weeks… I can’t really remember. Back then I was exhausted and the verge of a break down of my own… that is, until I decided I could wallow in self-pity or pull up my big girl pants and change the gloomy prognosis by getting her skills and supports to keep her out of an institution.
Institutionalization? Yes, the diagnosing psychologist told us to go home and put our affairs in order to have her institutionalized… We fired her! In hindsight, I am sure it was a power play to try to scare us into utilizing their program, but that only inspired me more to prove this system wrong… and to do it my way. A gamble? Perhaps… but it was better than the alternative.
When we saw the word ASPERGERS written on the psych report for our oldest daughter… I was not completely crushed like I had been four year prior. OK, maybe a little, but not nearly to the degree I was with the catatonic infantile autism label.
I knew… and somehow the last 4 years have definitely prepared me to the concrete realization I have two kids, not one, on the spectrum… opposite sides, but regardless… here we are.
Aspergers! It does Answer a lot of questions for us. VALIDATION!!
SO I found myself, again, asking…
WHY DID IT TAKE 13 YEARS TO GET THIS DIAGNOSIS??
I started to think, would it have taken this long for either of my children to get a diagnosis had they been boys? 1:88 children are diagnosed with Autism today… 1:54 boys. I have said all along that there are definitive gender differences in girls vs. boys.. across the spectrum.
With a girl on the Aspergers side of the spectrum… it looks different than with a boy. The girls get focused (aka obsessed) with gender appropriate toys… so a sweet little girl lining up her stuffed animals all over the front room is socially acceptable and this activity can be misinterpreted as a tea party. OR the appearing to be a shy little girl hiding under her mother’s shirt or behind a chair is somehow expected.. and by the way, isn’t that adorable? Or somehow that quirky little girl sporting her ponytails and dress becomes just so cute, feisty, or spirited.
Then around the 3rd or 4th grade… when the academic piece starts to fall apart, it is easy to brush it off as she is just becoming ‘boy crazy’ (Yes, an intervention specialist told us that once! I was so angry… because my child was not interested in ‘boys’ like the other girls… another huge red flag.)
Or she just isn’t trying hard enough… you don’t discipline her enough…. you let the tail wag the dog…. she is so stubborn…. etc etc etc
Then when the Asperger adolescent hits puberty… hormones surge. The hormones coupled with the new demands on an adolescent girl with social expectations changing rapidly.. gets shrugged off as anxiousness…. when in fact, they don’t know how to navigate the social constructs and inside are drowning. They are excellent observers and imitators… but If you watch closely you can see them ‘playing the part’ on the edge of the social circle.
WE MUST START LOOKING AT MARKERS FOR AUTISM, ESPECIALLY ASPERGERS, DIFFERENTLY WITH FEMALES THAN MALES.
2 years ago we had Emily evaluated by another psychologist and she said, “I would have given her the Asperger diagnosis, but she scored too high in self-care.” Are you freaking kiddin’ me?? We lost 2 years of intervention because they look at the diagnostic tools established based on male autism attributes.
Just because females attend to their physical appearance and space, they get ruled out? No wonder there are more boys formally on the spectrum than girls.
So, here I am… at another epic crossroad in my complex life… I can choose to loathe in self-pity and blame, or take action to give my girls the support and skills they need to navigate life.
I choose empowerment.
And so, the unexpected life continues w a new chapter, this time with the realization I not only have 2 kiddos on the autism spectrum… but 2 girls. 2 girls that manifest it very differently from each other.. yet, very much the same and much differently than their male counterparts.
Jeneen Interlandi in her article, More Than Just ‘Quirky, states this concern of mine more precisely:
“It’s not uncommon for girls with Asperger’s to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don’t think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger’s manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger’s seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.”