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A Bit of Background: Our Road to Diagnosis

January 13, 2017

Seeing as how we’re at the very beginning of this blog, I thought it might be helpful to give you a bit of background on Mika and her diagnosis. Mostly because I imagine you’re a little confused by me saying that she has Asperger’s Syndrome while the blog tagline is ‘A Mother’s Journey Through Autism with Her Daughter’.  And also because I imagine you thinking, “Make up your mind, woman!”


The thing is, both terms apply for Mika, and not just because of changes made to the definition of Asperger’s in the latest (fifth) edition of the Diagnostic and Statistics Manual of Mental Disorders (DSM-V). Here’s why.


Diagnosis for us came late for a number of reasons. First, when Mika was born in 1994, autism was still routinely missed in girls, who often didn’t display the same ‘classic’ symptoms that boys do (in fact, misdiagnosis in girls remains an issue even today). Asperger’s itself was a brand new addition to the DMV-IV that year, so even if I had taken her in during her early years, it was unlikely that an accurate diagnosis would have happened. As it was, the first time she was evaluated at the age of eight, we were told she had a 'language-based learning disorder' (translation: dyslexia)...with no mention of anything else.


The second (and probably most influential) reason was me. At the time, I was firmly in the camp of THOU SHALT NOT LABEL MY CHILD. I didn’t like labels because I felt they limited a child through preconceptions, and frankly, I didn’t trust them. To be honest, I remain somewhat ambivalent about them to this day, but I’ll leave that discussion for another time. For now, back to our diagnosis.


Mika was first diagnosed with Asperger’s just before her fifteenth birthday. After we’d been told she was dyslexic, we decided to home school her for a year to bring her reading skills up to par. When one year became a permanent thing (more about that decision in future, too) and Mika no longer had to fit the mold required by school, her ‘quirks’ were no longer an issue...until puberty hit.


Serious questions began to rise in our minds when Mika was about thirteen, but I had lost my mother the year before, we had two other teen girls in the family (along with all the drama teen girls bring), and I just wasn’t ready to face the possibility that we had a real issue on our hands. As time went on, however, and full-on meltdowns became the norm (complete with huddled up rocking back and forth and continuous muttering of “don’t touch me don’t touch me don’t touch me”) and the impact on our family became obvious, I could no longer pretend everything was okay. In April of 2009, I requested testing through a psychologist who specialized in Asperger’s, and our diagnosis was made.


Or was it?


Fast forward to 2012 and age 18 (the intervening years to be covered in future posts, I promise!). After years of research and observing my daughter, my gut told me we didn’t yet have a complete picture of what was going on in Mika’s head. I requested another evaluation, but asked this time for a neuro-psychologist (NP) so we could look a little deeper. After four weeks of testing, the results came in—and they were, as I’d expected, a little different from our first round: high-functioning autism.


The NP felt strongly that the initial diagnosis had missed the mark, and in talking with her, we had to agree. One of the key differences between Asperger’s and high-functioning autism as they were defined at that time was delayed speech in the latter—something that we had definitely encountered with Mika. (She’d never really babbled as a baby, and I’d had to work hard to get her to use words rather than pointing and saying ‘uh’...but I’d never raised my concerns with the doctor—heck, I’m not sure I raised them with myself at that point, because LABELS.)


Long story short, the NP left the “official diagnosis” as Asperger’s for the time being because she felt (and we agreed) that the term carried less negative impact than autism at the time, high-functioning or otherwise. Since then, the DSM-V’s new classification system has eliminated the Asperger’s sub-category, stating “Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”


So what label does Mika carry? Her clinical diagnosis has changed to ASD (autism spectrum disorder), but she still self-identifies as having Asperger’s. Like us, she's found reactions to be more positive to that term than to autism. If someone isn’t familiar with Asperger's, however, she’s comfortable explaining that she’s on the spectrum.


Because in the end, she's still just Mika, and the label isn’t really about her at all. It’s about all the other people who need a reason to give her a chance.



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