Why Rediagnosis?

So here I am telling the world that Autism is a neurological disorder and cannot be cured….right?right?  Yep that’s me….

So then why do I constantly get my kids rediagnosed? Why is this even an issue? Shouldn’t one diagnosis be enough? I mean you don’t see parents of down syndrome kids going in for another genetic screening and coming back out and saying “yep, just like we thought…Down Syndrome”, so then why do parents of autistic children go through this every 2-3 years?

It is because our kids look just like everyone else.  You know how on the show and movie V (yep the alien show) they where “skin” so you can’t tell them apart from humans.  Well, we auties feel like we wear a skin that helps us blend in.  There are no physical deformities; therefore, it takes awhile to see our issues.  Typically you see a bratty kid that needs a whoopin, when in fact a piece of clothing touched my sons arm and it felt like knives.

Therefore, to make all of the school officials happy these kids have to undergo a new diagnosis every 3 years.  It’s ridiculous and just because you can fake social skills and blend in doesn’t mean on the inside you aren’t full of chaos.  This is the goal for the rest of my life to teach educators and those surrounding autism about the fact that looks are deceiving and to constantly tell us “he looks so normal” is a slap in the face.

I think I get tired of repeating his symptoms over and over…it becomes monotonous.  There are times that I don’t even remember all of his symptoms.  I mean we live this every single day.  This is not like talking about a child in your class, this is talking about your own child.  This is his life, their life, not mine.  It’s extremely difficult to relate symptoms that are just an integral part of your life.  Some of the details that I gave yesterday includes:

#1: Constant spinning and twirling

#2: Talks as if 5 yrs old not 9

#3: Echolalia is present everyday (Can repeat movies word for word…repeats to himself anything that he hears passing by)

#4: Has no danger awareness

#5: I still have to complete all of his grooming including wiping his bottom

#6: Lacks eye contact

#7: Loves to make anything symmetrical

#8: obsessed with Legos

#9: Fabulous with math

And there were a few others, but these are just for starters………..there are so many things i forget to mention….what are some of the things you forget to mention when you go to the therapist or the doctor? Have you ever been told something you considered normal actually wasn’t?

~Alena Smith

Remember to live without reservations for your children!


One thought on “Why Rediagnosis?

  1. As you described the “quirks”, I remember my mom granting me leave of absence to spend hours spinning on the floor in stocking feet, reminding me that what I had just said was a word-for-word from a show or song, and spending too much time eliminating all the “textured polyester” [it was seventies/early eighties] from my wardrobe. I also had to be repeatedly reminded “indoor voices”, and “when you want to say ___________, use ____________ instead” [accidental rudeness] In fourth/fifth grade [mind the era], I had “amazing potential”, but had a constant “inability to transition subjects” [i.e. – “nobody obsesses like one with autism”] – testing didn’t account for the possibility of autism/aspergers [or the spectrum never accounted, *then*, for kids with high-functioning verbal ability].

    So when my Gran passed me a book, “Dibs in Search of Self”, I learned about “refrigerator mother”, and said, “That’s me, but that’s not Mama!” – it was weird.

    Then the youngest is officially documented, after having gone through the hoops. Moderate autism. Meanwhile, I get told, “well…maybe” – but I never did get checked for it.

    For what it’s worth, my youngest is in college, doing well. He has people around him – his stepfather, his grandmother, family friends, church friends – who support and encourage him. Overall, he’s doing pretty well.

    He wants badly to discard “the A-word” from his description. I tell him it’s not a “defect”, but a “half-step evolution” – multimedia and the ever-changing world requires ADHD [which his older brother has], and the study necessary to stabilize this weird world we live in requires the unfaltering tenacity of the OCD-prone, categorizing, pattern-seeking typically found in those within the autistic spectrum.

    He still thinks I’m nuts, but he concedes that it is a possibility.

    People look at him, interact with him, and never see “it”. There’s no distinguishing features. It’s just “there” – like the toothbrush that, the minute it begins to fray, is intolerable…or the quite genuine nausea accompanied by a strong perfume, or the very real headaches aggravated by too much – or too little – light. The fact that a simple tag in a T-shirt can bring him to near tears. The low-level stim that used to be in humming, later is in rolling his hair against itself to make the crinkle noise that drowns out extemporaneous noises and helps him “hear his thoughts” better.

    The “quirks”, so easily missed by neurotypical peers.

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