In the next three weeks Louisa has a series of evaluations to determine exactly what is going on with her. As I’ve mentioned before, we’re fairly convinced that she falls somewhere on The Spectrum but we don’t know exactly what she has or how bad it is. Next week she has the second part of an evaluation by Early Intervention where they will check her vision and her hearing, after which we can get started with speech therapy and probably some other stuff. A couple of weeks after that she has two appointments, one which is another speech/hearing evaluation (since it’s a different organization we apparently have to do it again) and one which involves a psychological evaluation and some other stuff, and which will give us an actual diagnosis.
When we first started thinking “hmm… something’s going on here… and it might be Ye Olde Autism” I did what I always do which is go into Extreme Research Mode whereupon I checked out every book the library has (I’ve read books about autism, books about Asperger’s, books about the guy who first coined the term “autism”, books about Temple Grandin, books BY Temple Grandin, books about autism and diet, books about autism and gut bugs, etc etc ET FRICKIN’ CETERA), scoured all of the websites out there and watched all of the documentaries/movies (Sounding the Alarm = helpful, Rain Man = not so helpful) to try to figure out what exactly is going on and what exactly we can do about it. In the midst of all of this, I came across a group of people who are loud and proud about their or their kids’ autism (and really, good for them) and neurodiversity and how we should all accept autism as just a normal variant. I am not sure, right now, how I feel about all of this. While I understand what these people are trying to say and where they are coming from, I want to do everything I can for my sweet daughter and therapy (be it speech therapy, behavioral therapy, occupational therapy or any combination thereof) could mean the difference between her talking and her being completely nonverbal for the rest of her life, the difference between her going to a mainstream school and her being shoved into special education, the difference between her learning to be an independently functioning adult who can take care of herself and her either living with me until I die and then me being panicked about what will happen to her when I’m gone or, worse, her ending up in some gross institution.
So while I get the movement that is all about not giving your kids a label or letting them be defined by a diagnosis, I can’t get any help without that diagnosis. Until we know if Louisa has autism or PDD or anything else spectrumy, and whether she is mild or severe, we can’t really get the services that we need. And that, my friends, is why she has all of these appointments and that is why I’m looking for a label – not so we can throw it around for special treatment or use it as a crutch, but so my baby can learn how to communicate and be the best she can be.