Autism, Aspergers & the ASD Advocate: Parenting in 8 to 11 minute segments.
My experience with Aspergers Syndrome, Autism, and the ASD Spectrum is closest to which of the following:
Advocating The Spectrum...
As Autism Spectrum Disorder, or ASD, continues to become ingrained into 21st Century culture, awareness is finally settling in about ASD's increasing prevalence. More children than ever before, 1 in 50 now (until recently, 1 in 80), are acquiring the curious disorder's diagnoses.
In common-speak, for those not in the know, what was once collectively grouped as 'Autism' has since been broken down into a 'spectrum' ranging from non-functional to high functional, with various specific identifiers, such as 'Aspergers Syndrome' for instance, found living somewhere on that spectrum.
At the the time of this article (September 2013) my step-daughter, currently 12, has had her 'official' diagnosis for one year. My step-daughter's unofficial diagnosis which was initially suggestive of autism, came at 6 years old. I have been in her life since she was 3-and-a-half and have witnessed the full 'evolution' of her condition first hand, on an almost daily basis.
Because Aspergers is frequently specific to males, securing an Aspergers diagnoses for a female is a long process, typified by numerous medical misdiagnoses, progressive volatility, extremism, hyper-sensitivity -and other such traits- on the part of my step-daughter, as well as our continued exasperation and frustration.
With Aspergers Syndrome there are no comfort zones, ever, for either the individual afflicted, or the parents. Aspergers Syndrome is a 'moving target' disorder of varying influences, so no two cases of Aspergers Syndrome are alike. There are certain similarities, however: Extreme sensory hypersensitivity, obstinate defiance, rigid inflexibility, and many other progressively evolving issues.
Managing Aspergers Syndrome requires a complete shift of the parental thought process. Eventually this parental shift in thought will require one, preferably both when possible, of the ASD child's (step-)parents becoming an informed advocate. Period. Those who do not, will be shuffled through the path of least resistance, most notably, beginning in the public school system system.
No school is immune from secretly desiring to minimize the potential for costly off-set of costs associated with AS. Regardless of how 'great' or stellar a particular school, or district, is or claims to be, accommodating autistic children comes down to finances; so parents take heed:
ASD parents who approach an ISP meeting casually, or weakly, will be steam-rolled over every time. It is incredibly expensive and inconvenient for schools and school districts to make Individualized Support Projects (ISP's; also called Intensive Support Programs). However, with a formal diagnosis, ISP's are the law. As such, schools must either make accommodations for, or fully fund the outsourcing thereof, such resources as to meet any child's right to education.
For instance, at my step-daughter's school, last year's ISP meeting was disastrous for us because we were hopeful and ignorant. We learned only in hindsight after that the squeaky wheel is the one that the oil.
We approached last year's meeting with a tone of "gee we really hope you can help us here." That ISP meeting lasted 16 minutes, as the former executive administrator, (now no longer there), subsequently undertook a ridiculous process of promises, bait-and-switch tactics, and excuse-making that floated my step daughter through the entire year without any ISP services.
We were trusting and ignorant; but we were not stupid: that wouldn't happen again.
We spent the summer networking and researching and upon the start of this school year immediately demanded an ISP hearing... Ok, sternly insisted. Days before the ISP hearing it was, ooops, 'rescheduled' to a month later. We mobilized with our local autism advocates and armed ourselves with information.
For this year's ISP meeting we were prepared: This year's ISP meeting lasted 2 hours and 45 minutes, was dual tape-recorded, while I acted as stenographer.
We came to the table with 3" thick binder, statistics, LAWS, a list of goals, a list of objectives, a list of requests, a list of expectations, special accommodations, and even... a professional advocate (usually they're free) in with us to be the 'cage shaker'.
What a difference.
Just this morning we received a phone call from one of the teachers at our daughter's school inquiring if there was anything that could be further done in accommodation. The price of being well-informed, clearly off sets the cost of ignorance so become an advocate for those things worth championing, clearly.
When it comes to managing an ASD household, our lesson's learned, were learned at high costs, however. We realized that, at home, there needs to be focused, full-time assistance and guidance for ASD individuals, if possible. As mentioned earlier, my step-daughter is now 12; I have been in her life almost nine years. In 2011, after years of frustration, my wife and I realized that we couldn't afford the full-time provider support required to guide ASD kids; me researched and discovered that the cost would approximate what had been my annual salary at the time.
So, during one of the worst financial landscapes still feeling the ravaging effects of the 2008 housing market meltdown, I quit my very secure Federal job career, to become that provider to my (now) pre-teen step-daughter.
I read a recent online lament of a fellow who was dating a gal with an ASD child; clearly he sounded fed up and exasperated in what soon read like a personal rant. He eventually asked the open community "what will it take to make the ASD parenting experience easier?"
Folks, there is no panacea, however just remain focused upon the situation at hand. I responded to the man's post with one simple observation: "Learn to live your life in scheduled 8 to 11 minute segments."
Every parent of an ASD child knows what I mean by that.