Linking up with Kelly over at This Ain’t the Lyceum for 7 Quick Takes.
My 9 year old daughter, Grace, was diagnosed with Asperger’s Syndrome back in February. I’ve been thinking about this a lot in the last couple of weeks, as we get ready for our second year of homeschool, so I thought I would jot down a few quick thoughts.
1. DSM-5 can kiss it. Technically, Grace was NOT diagnosed with Asperger’s. She was diagnosed with a mild-form of Autism Spectrum Disorder. That is because in 2013, the American Psychiatry Association updated the Diagnostic and Statistical Manual of Mental Disorders to remove Asperger’s Syndrome as a diagnosis, and instead including it under the umbrella of the autism spectrum. And I get why they did it – to improve consistency in diagnoses and increase access to care (read: insurance coverage). There’s a good explanation here. But there is an identity factor that is lost by removing the term “Asperger’s Syndrome” from the diagnostic manual. It is a term which has become well understood by parents and practitioners, and even permeated the general lexicon. So even though it isn’t quite legit, when it comes up with friends and practitioners, I say Asperger’s.
2. Parenthood is enlightening. Not the vocation, the TV show. Well, yes, parenthood is enlightening. I do not think I have learned more about myself, the gift of unconditional love, my relationship with God, or the world in which we live since I became a parent. But no, I’m talking about Parenthood. We cut the cable about two years ago, and since then my viewing habit largely center around Amazon Prime binges of long running TV shows I never managed to watch the first time around. And for some reason I missed Parenthood when it first came out. Perhaps still bearing the emotional scars of crying week after week at ER and the perfection of “feel sad TV”, I avoided the tear jerker serial dramas. (I dumped Grey’s Anatomy early on. Why’d you have to die, Denny?!) After watching the first couple seasons of Parenthood over the course of a few weeks, mostly as a way to decompress after a day educating my quirky, challenging child, I really became drawn to Adam and Kristina’s story, especially how they dealt with their own quirky, challenging child, Max, and his Asperger’s diagnosis. Wait, what? Yep, watching Parenthood was what made me realize that we might be dealing with more than stubbornness and sensory issues. Which is embarrassing. Especially because my husband has Asperger’s. Yeah, duh.
3. Everyone is different, but girls are really different. In my own boneheaded defense, Grace is not a typical Asperger’s kid. Not that there is a typical Asperger’s kid. I have often read “If you’ve met one kid with Asperger’s, you’ve met one kid with Asperger’s.” Profound. But, there is a profile, and at first blush she doesn’t quite fill it out. She is very affectionate, loving and expressive. She generally makes eye contact with people she knows, although I have come to realize she stridently avoids eye contact with adults she does NOT know. Yes, Grace is affectionate and “personable”, but she is also very socially awkward. You might notice it right away, and perceive it as friendly and outgoing, but get to know her and you realize there are social conventions, even for nine year olds, that she just doesn’t get. BUT … it turns out that Asperger’s in girls can manifest very differently. Where boys can be socially withdrawn or disinterested, girls can be socially awkward. Where boys can be fixated on collections and classification (trains, bugs, Lego, sports statistics), girls may prefer more elaborate immersive activities (Greek myths, fantasy genre, Shakespeare or period drama, or even Bible stories). And where boys can be prone to loud, explosive and sometimes even violent outbursts when stressed, girls may seem more likely to “melt” and cry, or withdraw completely when pushed to their limit.
The other marked difference between boys and girls on the spectrum is the diagnosis rate. Asperger’s Syndrome and Autism Spectrum Disorders occur more frequently in boys than in girls, that is true. It is believed that it is 4 times more likely to occur in boys than in girls. But what is really interesting, and alarming, is the diagnosis rate for Asperger’s, mild ASD or HFA (High Functioning Autism) is closer to 10:1 boys to girls. That’s a huge disparity. So girls are less likely to have it, and if they do have it, they are even less likely to be diagnosed. There’s a good, if not a little dated, summary of detecting ASD in girls here.
4. It’s that social thing. Many of the issues – and incidents – that ultimately led us to homeschooling were social in nature. The last straw was a mom of one of Grace’s classmates emailed me directly and accused Grace of bullying her daughter, a classmate of Grace’s. Anyone who has met or even observed my sweet-but-meek child would just shake their head at this, and many did, including her 2nd grade teacher. It turns out it was a misunderstanding – of course – and the girl in question mistook as aggression Grace’s insistence at being kind and friendly, after the girl had attempted to isolated and shun Grace. The reason this incident stands out is not because of the girl’s behavior, but because of the mom. It was pretty shocking to be contact directly on my personal email with such an accusation by someone I had never met. After the teacher was involved (by me), the situation quickly resolved. The behavior itself was pretty common. Over the three years Grace was in public school, she was repeatedly targeted by mean kids, bad behavior and predatory friends – someone who would befriend her and her current bestie, only to “peel off” Grace’s friend. In the second grade, y’all! The most heart wrenching part for me, as the mom, was that Grace was completely oblivious to this, and was convinced of her (former) friends’ had only the best intentions. So, yeah, social aptitude was an issue. THE issue, actually.
5. It explains a lot. She’s a quirky kid, and there are a lot of quirky things about her. She’s the most stubborn person I know, big or little. She is sweet, and innocent, and incredibly naive for her age – which is fine by me. Her handwriting is atrocious for a nine year old – for a five year old, actually. She can practically memorize and recite verbatim a story the first time she reads it, but cannot tell you who is the main character or what is the main idea. She cannot think and write at the same time, so while she understands math concepts in spades, she cannot sit and do sums. She has these silly, sweet verbal mannerisms that make her sounds like four-foot tall English literature professor. All these little things that made me think her quirky, or the big things that made me think I was going C-R-A-Z-Y or was a bad homeschool mom, all of them are explained by Asperger’s. Especially an asper-girl.
6. A gift from God. Call me a naive, hope-filled mom (because I am), but I do not see Asperger’s as a neurological disability. Yes, my child is not neurologically “typical”, but she is far from disabled. She is absolutely functional in the world, and I fully expect her to be a fully-functional, productive adult. She has a gift for learning languages. She is practically incapable of lying. She is wicked smart. And she is crazy, super-duper, head-over-heels in love with Jesus and not the least bit self-conscious about that. So not typical, but a pretty amazing set of gifts.
7. A diagnosis doesn’t mean much, but it can mean help. Once we realized “there’s something going on”, we had some time to decide whether to pursue a diagnosis. We made an appointment with a pediatric neurologist pretty quickly, and were able to find a good one through the same clinic where we had Grace’s sensory issues assessed as a baby, but between making the appointment and having the appointment there was a three month gap to decide whether to KEEP the appointment. Because getting in to see a pediatric neurologist who takes insurance for an non-emergent situation is hard, y’all. On the one hand, it would mean putting a label on this kid. She’s not in the school system, and we didn’t really need to tell anyone, so it’s not a BIG label. But still … a label. On the other hand, a diagnosis would a) confirm I’m not crazy-imagining things and she really IS a challenging, a-typical kid, and b) would assist us in getting her therapy and assistance, and better yet, getting insurance coverage for therapy. And in the end, that’s why we chose to go ahead. We didn’t really get any resources from the neurologist other than a folder with a pamphlet pointing us to the local autism support group. But, we have the “Diagnosis”. The golden ticket requiring our insurance company to cover her therapy related expenses, to the extent they are required by law and the plan we purchased. And that will be a big help. We have already enrolled her in a social skills group, which is helping here and there. And as I mentioned, we may return for some handwriting help. I believe – and others have told me – it is much easier to get those covered with an official diagnosis.
7+. It’s not time to tell, yet. One last thought. After talking about it with her neurologist, her dad and I have decided not to tell her about her diagnosis. Not yet. I’m confident she will let us know when it is time to tell her, which I already have an idea how to explain to her. It’s a lot to saddle a little kid with – it’s a lot for a mom, too.