Tag Archives: social rules

A person’s right to fully participate in all aspects of society….

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Shepherding children to adulthood is a bit of a whirlwind. The school years are often one long race from morning ‘til night. But as any parent of both a neurotypical child and a child with autism can testify, there is great variance in the nature of whirlwinds… both my husband and I realized early on that our parenting style changes dramatically depending on which offspring we are with at any given moment.
Just a mundane example: Looking back at the 13 years that our neurotypical daughter, who is now 26, was in school, we dutifully appeared for the standard parent-teacher conferences and events where her teachers heaped praise on her. In contrast, during the 16 years that our son, who has autism and is now 24, was in school, we were there for IEP meetings multiple times per year for ongoing consultations with teachers and administrators multiple times per year, disciplinary meetings, emergency meetings, negotiations about behavior plans, and then of course those same parent-teacher meetings and events. Vive la différence! I was a virtual stranger to my daughter’s educators; I was a regular installation for my son’s.
I began my teaching career before I had children. I loved learning about the theory of multiple intelligences and different learning styles and used this information regularly as a music teacher. This background in education and child development certainly helped in parenting as well. As a disability advocate now, I often run into parents who honestly don’t know that their children’s development is different than what it should b, because they are not in a field that requires that knowledge. Having a background in education helped me identify early on that our son was wired differently, and that all those big books about the stages of child development did not actually apply. I knew we were in foreign territory, and I knew that I didn’t know what to do.
Our son is a poster child for multiple intelligences and different learning styles. I am eternally grateful for all the educators who have worked hard over the years to figure out how to reach him, encourage him and recognize his strengths. As a parent and educator in the world of special needs, I know both how difficult this can be and how essential it is. Along with these wonderful teachers though, there is sadly also an equally long list of educators who did or still do not seem to have any patience or desire to work with someone who’s learning style was or is outside of their comfort zone. Some were downright abusive, some just impatient, most (of this list) just could not figure out what his story was.
Fast forward: Our son is working very hard to finish art school, where he is studying hand-drawn animation. Art school has been an amazing blessing for our son. He has learned so much, and the school has mostly put up with his very unique learning curve. No complaints. Well…. maybe just one.
Not a complaint actually, just a plaintive wish. I so wish that anyone interfacing with students, of any age, would have some understanding of invisible disabilities like Sensory Processing Disorder and autism. Though there are certainly many people with autism older than my son, he is of the “tsunami” generation, when the numbers of kids diagnosed with autism exploded from 1 in 10,000 in 1970 to 1 in 1,000 in 1995…and of course the explosion has continued, because now, (depending on which office of the CDC you listen to), the numbers are either 1 in 39 or 1 in 58. The statistics for Sensory Processing Disorder are even higher, 1 in 6. Autism is no longer rare. Sensory Processing Disorder is everywhere. Mental Health departments on college campuses are expanding beyond any recognition of the mostly unused offices that they were in my time.
So, educators of any age need to know what autism looks like, beyond the dry words of description in the book. When my son verbally expressed his excitement on the first day of the semester’s drawing class, he did so in a way that seemed odd and not age-appropriate to the neurotypical professor. He then leaned over to compliment another student’s work, and the professor saw someone who didn’t seem to understand personal space. And then he dropped his metal water bottle a few times. Apparently, he also didn’t understand that the class was supposed to stand in two lines to show their work at the end of the day, and he was pacing back and forth waiting. In short, he was exhibiting signs of autism, and using strategies to help him process the sensory overload at the end of the day. And at the end of this class, as instructed by the Learning Support Office, he handed the professor his letter of accommodation explaining about his disabilities.
I only know all of this because, despite the letter, the professor reported to the department chair that he didn’t know what to do with my son because he was disruptive, and I was called in to hear that my son was being put on probation for the entire semester. What is the nature of the probation? That he is not allowed to make any noise on campus.
I am definitely convinced that the professor is doing the best he can with what he knows. I do not think bad of him. A classroom is a public space and growing up we all figure out how to conform our personal expressions in public so as to be culturally appropriate. My son needs to learn what works around neurotypical people and what doesn’t. Ableism is still around big-time. So, I’m not complaining, I’m just repeating my plaintive wish: I so wish that anyone interfacing with students, of any age, would have some understanding of invisible disabilities like Sensory Processing Disorder and autism. And of course, why confine this wish to educators interfacing with students? I so wish that people everywhere would have some understanding of invisible disabilities like Sensory Processing Disorder and autism.
In Item 2 of Sec. 12101 of the ADA Amendments Act of 2008, it says:
(2) in enacting the ADA, Congress recognized that physical and mental disabilities in no way diminish a person’s right to fully participate in all aspects of society, but that people with physical or mental disabilities are frequently precluded from doing so because of prejudice, antiquated attitudes, or the failure to remove societal and institutional barriers;

 


Sigh.

https://tacanow.org/autism-statistics/
https://www.ucsf.edu/news/2013/07/107316/breakthrough-study-reveals-biological-basis-sensory-processing-disorders-kids

Is Addressing “The Elephant In The Room” a “Social-Interaction Difficulty?”

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Google the “signs of autism” and the very first thing that pops up on most of the lists is, “social-interaction difficulties.” As I have had the privilege to live in different cultures, and as culture determines what kind of social interactions are deemed appropriate, I’ve long wondered about how hard and fast this determination of autism can be, since social rules vary greatly from culture to culture. This was extremely apparent when we arrived in this country in 1998 when my son was 3. While I am not disputing that my son has “social-interaction difficulties,” the habits that he had that were inevitably identified as social issues were actually cross-cultural issues.

He was born in Israel, where culture, and therefore social norms, has certain obvious differences from mainstream American culture. For one thing, people in the Middle East are more emotionally expressive than in the US. When you greet someone who you know and like, you hold their arms and kiss them on both cheeks. So this is how my son learned to say hello. That was immediately flagged by early therapists as a “social-interaction difficulty.” I tried to explain that he was just being friendly in the way that he had seen people be friendly…no go.

The list goes on and on…he was too animated when he spoke, he was too physical when he played, he stood too close to people. All true, but only a display of “social-interaction difficulties” in the West…none of those things ever stood out as problematic when we visited back in Israel. Different cultures have different rules. (Autism, as a culture, has different social rules too, but I’ll leave that thought for a different blog.)

Another way his “social interaction difficulties” have always expressed themselves have been through his tendency to talk freely about the “elephant in the room,” whatever the elephant happened to be on a particular day. I always felt like he had a radar sense when something unspoken was going on in a room. Therapists always felt that he was woefully unaware of socially acceptable conversation.

One thing I have learned from raising my children was that so many things in life are a case of and/and, not either/or. Yes it is important to think before we speak, yes it is important to consider other people’s feelings, and yes, often it is really helpful to be the one to be able to point out the elephant in the room. The act of stating the elephant in the room is not a “social-interaction difficulty” in and of itself. The sensitivity involved in social interaction and mature communication takes a lot of thought, and one needs to figure out whether or not each particular elephant should be pointed out, or not.

As we all know, we are currently living through one of the most bizarre presidential elections in American history. One candidate prides himself on saying whatever he feels like. He scorns “political correctness” and doesn’t seem to care who he hurts. Perhaps he thinks that he is doing a good thing by talking about all of the elephants in the room that he thinks no one else is mentioning. On the other hand, perhaps he never learned the lesson, which should precede talking about the elephant: that of thinking before we speak and considering other people’s feelings.

Educators and researchers have written numerous articles over the course of this campaign season about the effect this type of discourse has had on school children, and have watched in horror at what seems to be an uptick in incidents of bullying, racism and hate-speech in schools. Others have reported that people who have been bullied and abused in their life feel traumatized anew in watching a presidential candidate behave this way.

My son was badly bullied throughout his school years. In his inimitable manner of pointing out the elephant in the current room, he left me this voice message yesterday as he was on his way to college for the day: “Mom. I just want to tell you that I am really tired about Trump. He reminds me of all of those people that bullied me a long time ago. I know that I shouldn’t hold on to those memories, but it’s hard to let go, Mom, it’s hard to let everything go when something hurts you. Especially because he is a bully, it makes me remember being bullied and it really hurts. I’m sorry Mom; it’s just hard to hear things about Trump. I hope he doesn’t win Mom, because bullies shouldn’t win.”

That would be a case, in my humble opinion, of just one of the many elephants in the current room that should be addressed. Long live my son’s ability to name the elephant in the room. Because thankfully, he has come a long way in learning how to think before he speaks and consider other people’s feelings. In his case, naming the elephant in the room can no longer be considered a “social-interaction difficulty.”

 

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