As the mother of a 9 year old with autism, diagnosed at the tender age of "just" 2 years old, most of my life as a parent has surrounded the special needs world. Even having a neuro typical daughter of 6 doesn't do much to pry me from this world. My son with his high needs takes up every ounce I have to give, my daughter, by no fault of her own, drains my energy to the negative numbers. However, when they are getting along and "Buddy" learns something from "Sophie" I am ecstatic and overjoyed, and it's all worth it.
One of the worst questions I've had to deal with, as the parent of a child with autism is probably asked of me in hopes of softening a blow. However, I think it makes it worse. That question, that I've been fending off for years is "Is he high functioning?" when people hear I have a son with autism. It is usually asked with an expectant tone, one that expects I'll say "Yes". How do you answer that? High functioning to who? What does "high functioning" actually mean? Does it means a child dresses themselves and can follow some simple directions? Does it mean he doesn't look all that different from his/her peers in a social setting? Does it means he's intelligent or gets good grades? What does it really mean? Does it mean "he causes you little trouble" or "he'll be just fine in a few years...". Probably second most loathed to this question is "Will he grow out of it?" Autism is now being changed with the next DSM V edition later this year to be termed "Autism Spectrum Disorder". I'm not sure how they plan to address levels of functioning within it, but one of the things that will not change is that Autism and Aspergers are still Autism, they are still impacting someone's life, an entire families life, in a way that will not be the "straight and narrow". Our celebrations will be different, whether celebrating a 9 year old stooling on the toilet (still waiting here) or a 7 year old playing with a peer for a few minutes without a helicopter parent at his hip, or a 4 year old that didn't scream uncontrollably while her Mother went to the bathroom. Our struggles will be different, yet the same, from one family to the next. Each child will have his or her own unique behaviors and struggles, but the overall impact on the family is typically easily defined: Exhausted parents, siblings who can display amazing tenderness and extreme frustration all in the same day, a family that "doesn't get out much" and nothing going according to the plans made by the grown ups any given day. Parents often learn to live around a constant low level anxiety and nagging....that is what gives us autism Mom's "super hero hearing" and "x ray vision" and that innate sense that something is afoot when the house seems normal to an on looker at any moment. We can plot and plan our childs next move, after years of observing their rituals. We have child proofed our home in an ever evolving way to levels beginning to compete with a professional facility. We have different goals and different things that we praise with our children. However, at the end of the day, the "level of functioning" doesn't matter. Whether my child is low or high on the autism spectrum doesn't matter, it is still going to mean that the life we parents envision at the outset is going to look very different, perhaps for a very long time. Peers are taking their boys to little league and karate and etc...I am still praying for completion of potty training and the ability to go out in public without my child making a scene that has security threatening to call the police. My son still prefers ABC type light up toys for toddlers and watches blues clues, Dora and The Backyardigans, while other kids are watching tween shows on the disney channel. Childhood lasts quite a bit longer with autism. However, it doesn't mean I love him any less, in fact I might even love him more, BECAUSE he is different. He notices the world in a way neuro typicals never will. He sees the smallest of detail, and remembers every place he's ever been, even if it was once and he was "too young" to remember.
