theebrandenburgs blogspere

This page is designed to share information about our struggle to gain equity for our unique children and their learning styles in a public education system that is designed primarily to teach a single type of learner, and which is increasingly sidelined by fiscal and philosophical issues that challenge the core of its collective existence. We are especially interested in unique learners, and the talented people who teach them, their families, and our shared value as human beings. We seek the end of discrimination, the end of seclusion, separation, and isolation, as well as an end to chemical and physical restraints that are commonly used to assault our children and our unique interpretations of the world.

Thursday, December 29, 2011

Autism: A Hidden Disability

Autism: A Hidden Disability

By Tony Brandenburg

Originally posted on November 8, 2011 in the Sierra Madre Patch

In general, a disability is defined by Title 1 of the Americans with Disabilities Act (ADA) as mental or physical impairment that prevents an individual from performing one or more "major life activities.” Major life activities include the ability to care for self, walking, speaking, breathing, hearing, reaching, lifting, learning, sitting, standing, working, sleeping, thinking, concentrating and interacting with others.  I use the terminology above because it is the the language of the law; however, in my life I find the term impairment to be offensive and of little use to describing the outcome and impact that families and individuals must navigate and endure.
While these definitions are sometimes evident- either in the outward physical features of an individual, or in the way in which some individuals present themselves outwardly- not all disabilities are easily identified and recognized by society at large. Nor are they tolerated, accepted, or even acknowledged. These are sometimes called “hidden” disabilities, and are often overlooked, or misunderstood, by people who are unaware of their existence- or whom choose to interpret the disabilities’ manifestations as something else. 
Nonetheless, the rights of people with “hidden disabilities” are protected by Section 504 of the Rehabilitation Act of 1973 in programs and activities that receive Federal financial assistance. This includes public schools. Section 504 provides the basis for the Americans with Disabilities Act. According to the Office for Civil Rights (OCR): Approximately four million students with disabilities are enrolled in public elementary and secondary schools in the United States.
Section 504 provides that: "No otherwise qualified individual with handicaps in the United States . . . shall, solely by reason of her or his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...." The impact is far reaching, and includes a number of hidden disabilities that many people still don't recognize as such.
Students with hidden disabilities frequently are not properly diagnosed. There are a number of reasons for this, but the common reason is that people, including parents and teachers, just simply don’t know.  As a result, these students may be perceived by teachers, their parents, and other peers as being lazy, disruptive, defiant, and as discipline problems. If undiagnosed, the stigma of these labels become interchangeable with the child, and the child then becomes the label. As much as people want to believe that labeling a child with a hidden disability is unwarranted and unnecessary in an inclusive school or society, the labels that unqualified individuals create is infinitely more intrusive and uncompromising. Further, the way in which the child’s experience is interpreted by others can result in interventions that are founded more on misperception and frustration, than on any sound opportunities for behavioral change.
One disability which impacts 1.5 million American families is Autism. Autism, a neurobiological phenomenon, affects individuals throughout their lifetime in the critical areas of communication, interpersonal skills, and socialization, and is characterized by the need for predictable patterns and repetition. The way in which autism affects an individual can appear to observers as being ‘mild’ to ‘severe’ and its manifestations can present in many variations. Autism falls on a spectrum of other similarly related manifestations which include Asperger’s Syndrome and PDD-NOS. 
I hesitate to use the the word disorders, though I am acutely aware of the terminology as I often fall privy to it for lack of another term. I also find the term disorder to be disruptive because, at least philosophically, it implies that the world in which most neuro-typical individuals dwell is somehow orderly, or that it has order. Walk with your child at school in the last crunch of the morning before first bell, or consider the horror of war, and you may, at least peripherally, agree with me. 
The term “neuro-typical” (or NT as the Autism community abbreviate the term) is used here as being consistent with the neuro-diversity movement as the appropriate term to utilize when discussing the general population who are not directly impacted by Autism and Asperger’s. 
Autism can be a hidden disability in presentations that are not as widely recognized and obvious to parents and teachers. Indeed, most neuro-typical people may not even recognize anything but the outward manifestation of a ‘disruptive’ behavior which they interpret as “oppositional” or “defiant”  and fail to interpret the child’s need for order in sensory input and absolute miscue in terms of the social dynamic. How much simpler it becomes to say, “does not get along with others” than to actually interpret the behavior for what it is. 
For parents of a child with a hidden disability such as Autism there is a social isolation and a stigma associated with it that is not commonly recognized, nor acknowledged. Indeed, for a parent with a child who has a disability such as Down Syndrome or Cerebral Palsy, a behavioral crisis (tantrum) is accepted by the casual passerby as being part of the child’s interpretation of the world. In fact, some may offer words of encouragement or sympathy. However, for a parent of a child with Autism, the social isolation and exclusion can be very harsh, and very cold. After all, the child appears to be just like any typical child. In my own experience I have been a recipient of both verbal public attacks on my parenting, and an observer of the cold hard stare easily distributed by otherwise accepting individuals.
I recall a particularly difficult day in which I was at the mall in the food court seating area with one of my children who was about two at the time. I had locked my keys in the car (an unfortunate, but typical gaff of mine) and was waiting for my wife to meet me and bring me a spare. My son was crying, and nothing that I could do was working to calm him down. In fact, the more I tried, the worse it became. He had been crying for some time (it seemed like forever) when a person approached me and began berating me for his behavior, and then continued telling me that not only was I invading her quiet, but also her right to enjoy a meal in peace. She was led away, thankfully, by her friend who was just as horrified by her invasion of my space as I was. I wish I could say that this episode was the first and last time my family was treated in such a manner, but unfortunately, I cannot.
I share this story because the onset of Autism is sometimes detected as early as 12-18 months, but is generally recognized at about three years of age. For children who do not show the more overt and recognizable signs of Autism, as was the case for my own family, it can be significantly later. I fell into the belief, at least initially, that it was somehow my fault- that I was not parenting correctly- and that that I needed to change the way I did things. Outsiders were more than willing to accommodate that line of thought, and it would be a significant amount of time before I would actually understand what I had subjected myself to. This presented a number of awkward scenarios, and a plethora of advisors who were quick to berate, point out, and isolate me for my parenting, as being too permissive, of being ineffective, and- when  my family chose to pull back in what we considered a reflexive manner- to being seen as aloof, in denial, and unapproachable. Those are the nice terms.
We as a family had already established a system of behavior management that far preceded anything presented to us by the school specialists who simply treated the children with petty punishment such as time-outs and trash pick-up, and taught no replacement behavior- and which, in the long run, ultimately made things significantly worse. 
Why? I can only speculate, but in my own experience, I found the more my wife and I brought to the table in the form of information, and specifically in regards to current research on Autism, the harder the local school system fought back. The idea of parents as partners in education is a nice term, but it is exclusive, and really targeted for an elite group of parents who play by the rules that are firmly entrenched and which allow for little, if any, variation. 
It is my belief that if our local school system actually recognizes these behaviors for what they are- Autism- then an entire system of misdiagnosis (or no diagnosis) which encourages isolation (time-outs, "guidance rooms," and the like), suspension, and expulsion over teacher training, re-evaluation of behavior, a deeper understanding of an emerging human dynamic (1%-3% of the population has autism) and, ultimately systemic change. This will be one of the most significant "minority" groups in the world, one which crosses cultural, ethnic, gender, and socio-economic lines. How schools and communities choose to deal with it remains to be seen. 
What I have learned in the last few years is that my family's experience is shared by literally thousands of families worldwide. Our collective voice may seem unrealistic to Sierra Madre, but I assure you, it is hardly unique- and it certainly isn't going to be realized by a two minute discussion to parent volunteers and a PTA art contest, however well meaning that appears on the surface. 

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