In 2013 the DSM made a decision to combine all the different sorts of neurological disorders previously called PDD-NOS, Aspergers Syndrome, and autism into one. They now share the name autism spectrum disorder or ASD. The reason for doing this is unclear particularly in light of promising new research being done at Harvard University’s department of Bio-informatics which says that there are not only these subgroups, but as many as 11, which are distinct disorders that can be classified by their corresponding medical issues. Typical of American medicine and intervention, this information has not yet made it’s way to schools or clinical environments where standard practices could be established to make greater progress helping people who struggle with a variety of issues related to their disabilty. In fact, certain subgroups get little or no help at all.
Of particular interest to me are the Aspergers kids, because I have one, and let me tell you, getting appropriate supports for these children requires the skill of a surgeon and the patience of a saint. There is a saying in the autism world that “if you have met one person with autism, you have met one person with autism”, referring to the fact that the combinations of needs and presentations is endless and confounding. One thing is becoming clearer though, if your kid is intelligent but needs significant support for emotional/behavioral issues due to autism, which is the case with my son, the school system will fight tooth-and-nail to prove you don’t need help. I can almost understand this in the public schools where everything is driven by budget and there is never enough funding for all who need it, but it is slowly becoming an issue even in clinical environments offering services outside academic settings. Last year, my son was asked to leave a placement in a private summer camp due to “behavioral issues”. While I was disappointed, and everyone’s schedule was turned upside down by suddenly losing his summer programming, I figured at that point that it was just a one-off and he had outgrown the charms of this clinician. He had in fact made significant social gains while attending the program.
Fast forward 10 months. It has been a challenging year for my son and our family. While his grades are adequate in his inclusion classroom, his behavior and emotional state are in rapid decline and the stress in the household is palpable. He has not been provided any real instruction to help him navigate a world he finds overwhelming. He is being managed. After a contentious back and forth with our school district, our son was restrained by a school counselor who is not part of special education and the resulting anxiety forced an out of district placement to a therapeutic setting. This is positive news, but we still need to fill the gap from June til September with a structured, social skills program that will help to support his failing self-esteem and work to establish some coping skills. This is where it gets really frustrating…
We have now been refused placement by the 3 most prominent social skills summer placements in our area due to what they like to refer to as "peer match difficulty and behavioral issues". One of these programs is a hospital-based program from a prestigious Boston medical campus claiming highly skilled instruction for high cognitive functioning autism. Another is considered the gold standard in summer experiences for kids with ADHD, autism and emotional issues. Neither will even consider placing my son. His needs outpace their service level they say. Others have flatly stated they “don’t do behavioral kids” and that ends the conversation immediately.
So as I find myself at a loss for an appropriate summer placement for an 8 year old kid with his whole life in front of him, I feel compelled to ask all these highly skilled autism professionals, "what can you be thinking"? What will become of the high functioning kids who are harder to educate and do not fit into your nice little programs where nobody ever throws a chair or has a screaming fit because they are out of patience? Why is it acceptable to select only the easier kids for intensive support? I may never know the answer but one thing seems apparent, it sure is easier to enjoy a reputation of excellence when you only take the ones you think you can fix.
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