Friday, February 26, 2010

Flashback Post: September 17, 2005

I'm so incredibly glad that I wrote this particular post four years ago. It's quite remarkable how far we've come. There's a line in here somewhere about how I didn't know if Octobergirl would ever drink something and say "Wow, this is really good!" and just this morning she was telling me how much she loves her Horizon Vanilla milk but, "it doesn't really make sense that the box says salt is in the ingredients, Mommy. When I taste it, I only taste sweet. I don't get it!"

#21 9/17/05 A Little More Detail About Her Autism

Recently someone asked me what it was that got Octobergirl diagnosed with autism. Because she doesn’t display some of the symptoms that come with a more classic case of autism, it is sometimes difficult for people, particularly those without their own kids to compare her to, to understand what it is about her that is different. And honestly, I don’t always do a very good job at explaining it. Not for lack of trying but rather because autism affects so many different areas. Unlike many autistic children, Octobergirl shows no sign of sensory dysfunction. She is not bothered by textures whether it’d be something she’s holding in her hand or something she eats. Bright lights and sudden noises do not have an abnormal effect on her. She is not bothered by crowds or strangers, has no irrational fears and doesn’t cling to a set routine. She loves to be hugged, likes being around other kids and is a rather easy-going. She does however have very delayed communication skills. Very delayed. And by “communication” I don’t just mean that she has a hard time communicating with you. It is actually also quite difficult for us to communicate with her. So much so, that even now at almost three years of age, she’ll look at you only half the time when you call her name (and this is a big improvement). Kids normally pick up that skill by the time they’re eight months old.

I am currently reading this book called “Quirky Kids” that absolutely speaks to me. It is a book written by two pediatricians about children who, like Octobergirl, present with only some characteristics of autism. A good friend of mine is a pediatrician and I’ve noticed that she’s always been somewhat hesitant to use the “a” word to describe Octobergirl. Instead she uses words like “quirky”, “interesting” or “eccentric”. I like that, but it isn't necessarily true and anyway “quirky” won’t get me the oh-so-incredibly-important services that Octobergirl needs. “Autistic” will, so I’m sticking to that one.

But I’m getting way off the subject here. The point of this entry is that it dawned on me recently that I know many people who are both curious and concerned about our family and I have not been the best at clearing up exactly how Octobergirl’s autism manifests itself so I will try to do that here.

I’m going to add, word for word, parts of Octobergirl’s cognitive and psychological evaluations which were done in May in an attempt to make this all make more sense. For starters, Octobergirl has only recently started to make her needs known. At the time of her psychological evaluation, Octobergirl didn’t point. Had I known what to look for, this would have been my first, and probably most obvious, sign that something was “wrong”.

….does not use words to express her wants and does not exhibit pointing.

She has since learned to point but still does not use language to exhibit a want/need, rather she will either point or stretch out her arms and grunt.

….was restless and demonstrated a short attention span, exhibited only fleeting interest in testing materials.

….exhibits moderately inappropriate interest and use of toys and other objects.

The “testing materials” they refer to here are all different sorts of toys. She has only recently discovered toys. Around the time of this evaluation and before, she paid little attention to toys preferring instead to wander the house aimlessly “exploring”. Also, please keep in mind that while all 2.5 year olds have a short attention span, we are comparing her here to the typical 2.5 year old and his/her attention span. “Restless” was a word I wasn’t sure I agreed with at the time but can see it clearly now. She never stopped moving. She didn’t do this in the quick movements one may expect from a child with ADD which is probably why I never noticed it, but she never ever stopped moving and didn’t like to sit still which made restaurants and movies impossible.

….established sporadic eye contact.

….persistent attempts are required to get her attention.

She never turned your way when you called her name. You could stand right in front of her and yell her name and she wouldn’t even look in your direction. Try as you may, there was nothing that could be done to get her to look you in the eye. On occasion if she chose to look at you, she may maintain eye contact for 1-2 seconds. This has also improved to date thanks to the therapies she receives. While it is still mostly on her own terms, her eye contact has improved significantly and she answers 50% of the time when her name is called.

….verbal communication skills are in the 16 month age equivalent which represents a delay in 40%.

….has not developed meaningful language.

….has vocabulary of 6-10 words.

These have changed dramatically in the past four months. While she still offers no conversational speech, she does have a vocabulary (mostly labeling words) of about 150 words. Cool right? Let me clear up “conversational speech”. If Octobergirl sees a sweater in her drawer, she will say “sweater” if she sees a dog on the street, she will say “doggy”. If Octobergirl is thirsty, she does not know how to ask me for something to drink. If she is cold she does not know how to ask for a blanket or even say “I’m cold”. See the difference? This will improve in time, I’m sure. The thing is that we don’t know to what extent it will improve. In other words, there will be a time when she is thirsty and will say to me “I want juice”. This, I am sure of. What I am not sure of is that she will ever say “this juice is good!”. She may learn to use language only functionally or to get her needs met. But that purely-for-entertainment speech that you and I do where we talk about the weather and comment on how great those black slacks make my butt look, she may not ever do. Only time will tell. This is one of those things that has many a time made me wonder how many autistic people I’ve come across in my life and dismissed as “weird” or even “rude”, the kind of only-when-spoken-to kind of speech that doesn’t fly in social settings. We shall see.

….eats a variety of solid foods and is able to use a spoon and fork to feed herself.

….fine and gross motor skills are age appropriate.

….exhibits normal use of touch.

Some forms of autism come with compromised muscle tone, coordination and/or balance. We never noticed any of this with Octobergirl and neither did the psychologist. To be on the safe side, she was evaluated by an Occupational Therapist who confirmed that her fine and gross motor skills were fine and that she had no sensory dysfunction.

….exhibits mildly abnormal response to change.

In other words, she goes apeshit when she’s in the middle of something and you interrupt. She does not however seem to have a problem with her daily routine being changed.

….exhibits inconsistent cognitive skills: overall cognitive skills are delayed, but she is able to recognize letters and numbers.

In other words, it makes little sense that a child who doesn’t know her own name, doesn’t use “mommy” and “daddy” and can’t ask for milk or juice can know all her letters in upper case and lower case and can count from one to ten (in two languages nonetheless!).

The evaluations are 6-10 pages each and there are four of them, each from a different specialist. The one that “counts” though, the doozie is the one done by the psychologist which ends with this simple sentence:

….general impressions: shows a mild degree of autism.

So there you have it. Now you have (almost) as much info about my daughter’s behavior as I do. Now go ahead and ask me more questions if you have them.

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