Sunday, 24 June 2012
The Atlantic Magazine recently published an excellent article enumerating the myriad ways that an autism diagnosis changes a family forever. For those of us who have been in the world of autism for decades, these issues are well known and have been experienced firsthand, but for those on the periphery, the following inventory gives some insight as to why parents of children with autism become cantankerous as the years roll on.
As problematic as all of the above are, consider this: with even greater numbers of children being diagnosed with autism, this devastating reality is eventually going to visit every family due to the phenomenon we can herein refer to as, “coming to a neighborhood near you!” When the number gets big enough, EVERYONE will eventually be affected by the scourge, even many of the nasty folks that are making our life miserable today.
- the awful realization that one’s child will have monumental challenges with basic skills that we all take for granted such as language, self-help skills, academic skills, social skills, employment and living arrangements with dignity!
- the fact that the parents’ economic future will be crushed due to a) the massive, never-ending cost of therapy and supervision and b) the opportunity costs of careers derailed throughout the lifespan of the family.
- the no-choice advocacy that necessarily pits parents against recalcitrant school districts, health care bureaucrats or insurance companies and government agencies who deny necessary and appropriate autism accommodation.
- the career of the mother or father that is irreparably damaged early on in the child’s treatment due to the ongoing management and advocacy required to ensure access to treatment and appropriate education.
- a society oblivious to the time-consuming and financially ruinous reality of having a child afflicted with autism
The first example of the “silver lining” of the proliferation of autism is the diagnosis of the grandchild of the founders of Autism Speaks, the Wright family. Here we have well-heeled people with a megaphone, tremendous resources, outstanding organizational ability and the wherewithal to make a difference not only for their grandchild but also for the entire population of families and children with autism world-wide.
Recently I came across another so-called draft pick who is making a difference. Dr. Ricardo Dolmetch, a neuroscience researcher, who recently joined our club of parents of children with autism. Dr. Dolmetch changed his entire research focus to make a difference. He is now working to crack the autism code to lead to a better understanding of the disorder, with the goal of better treatments and, hopefully, an eventual cure.
With every new diagnosis, the ranks of our club grow. Hopefully, there will be strength in numbers. Until a cure is found, demographic facts on the ground are sure to change the status quo to the point that society will have to accommodate the reality of having a child diagnosed with autism so that the traumatic parent advocacy burden and financial ruin from self-funded autism treatment will be a thing of the past.
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