I’m compiling a list of things I’m asked, or things I’d like to address that haven’t been asked. 😉
What were the Autism (ASD) “red flags”/symptoms you noticed with Emily?
Some of the early symptoms are listed on the Baby Emily page. Of course, those are all in retrospect/hindsight. Autism didn’t really occur to me until Emily was about two years old.
At that time, what I noticed most were:
A lack of progression in her speech. I noticed peers (or even younger children) speaking a lot more than her. It was more than an isolated case of one whiz kid making her look delayed, it was an obvious difference in speech progression. What she could say was clear, however, which ruled out several other problems. She echoed/parroted phrases, or hummed songs she heard, so her hearing was not the issue, either.
At the time, I just assumed she was too “sheltered” and needed exposure to other children in order to “catch up.” Social exposure did eventually help some, but it was clearly not the whole problem.
So-called “tantrums” that extended beyond typical terrible twos behavior. It became clear to me that Emily’s “tantrums” were becoming more frequent and intense as she aged, rather than decreasing. I now know that they were not tantrums at all, they were/are meltdowns.
There is an excellent explanation of the differences here. That page does a much better job than I ever could, but if you want it in my words…
Classic two-year-old “temper tantrums” are usually a result of a child feeling ignored, angry, disappointed, frustrated, etc. and not being emotionally or verbally mature enough to express themselves. So, they scream, drop to the floor, and so on to protest their wants being denied (or because they figure out “being bad” gets you attention). These tantrums are usually (relatively) short, and the child can be “cheered up” (for lack of a better term) or redirected easily (again… relatively). There is no desire to harm oneself and typically no desire to hurt anyone else.
A meltdown related to Autism (ASD) is a whole other thing with a totally different cause. Meltdowns are more like… miniature nervous breakdowns. By that, I mean that meltdowns represent an emotional and sensory breaking point. The child (or adult) simply cannot take any more sensory input, any more changes in routine, any more… anything. They just can’t take any more. Meltdowns often look like tantrums at the start, but progress into something much more serious: self-harm (head-banging, scratching, biting, pinching…), lashing out (physically) at others, screaming, and “zoning out” (to the point where they hardly seem aware) are common.
Essentially, a tantrum is on purpose, a meltdown is not. Granted, you can sometimes get a tantrum/meltdown hybrid. 😉 Yes, Emily does tantrum from time to time, but I’ve reached the point where I can tell the difference. Acknowledging the difference aloud to her has made a big difference; when I acknowledge that she is having a hard time, she responds much better than if I act as though she’s doing something wrong.
It took me quite a while to learn and accept the differences between “bratty” behaviors and “Autistic” behaviors, but I definitely know better now.
What helps Emily?
Dietary/medical intervention has been the number one, followed closely by her placement in an ASD-specific classroom.
Cutting out gluten (a protein found in wheat, barley, rye, most oats, etc. that is hard for many people to digest) and casein (dairy protein), and starting her on daily probiotics lead to: 1. healthier number twos, and 2. a dramatic reduction in the frequency, severity and length of meltdowns. I found out, through some research (and observation of my own child), that those things are in fact connected.
In other words Emily’s internal monologue went something like this: “I can’t stand this pain in my gut, so I’m going to bang my head, pinch myself, and hit Mommy, because at least I’m in control of that… and it’s a nice distraction.”
Once the pain in her gut was reduced, the need to harm herself or others was also reduced. In fact, if Emily is (unintentionally on our part) exposed to gluten or dairy, slapping her own face, or taking a swing at someone else is the first symptom. The next reaction is either constipation or what I not-so-afffectionately call “wheat poops” – the opposite of constipation that comes with a very distinctive smell.
School has helped a lot with Emily’s behavior and overall “function,” due to the special attention and therapies she receives there. I believe the social aspect of it, along with just… having something to do have helped a lot, as well. A bored Emily is a very bad thing. 😉
More about what has lead to improvements for Emily is listed on the What We Do page.
Overall, when she feels better, she acts better. Simple as that.
More to come soon