Monday, November 7, 2011

Social Justice, Humanity and Autism

This first post is a reprint from January 2010. Every once in awhile I think its important to revisit the points in this article.


This week marked an interesting international event. January 27th was the commencement of an annual Holocaust Remembrance Day. Now the Jewish people have annually marked this day on Yom HaShoah every spring for decades. So in many respects it was nothing new for me to see the services and speeches dedicated to the remembrance of genocide. But what was interesting was that you had an Israeli President speak before the German parliament in Hebrew. The grandson of holocaust victims speaking in the revived ancient language of the Jewish people to the grandchildren and great-grandchildren of those who sought to obliterate the Jewish people from the face of the earth, a truly poignant and redemptive moment in history.
I have written before about the Holocaust, (read below) its meaning for our children and why it is so important to remember such evil. Never forget, that before the Nazis began their campaign of mass murder against the Jews of Europe, they practiced on the disabled. Yet, while a large part of the western world stood in silent contemplation on that day, the overwhelming majority of college campus worldwide ignored this day’s significance. Even collegeman’s school which houses one of the largest holocaust libraries in the country had no ceremony of remembrance. I think it bodes an ill wind that the future leaders of our world are taught to protest, speak out, and march in solidarity against every global rights violation but cannot bring themselves to commemorate one of the greatest evils ever perpetrated by man. I leave it to my readers to wonder why, on college campuses, the world’s inhumanity to its Jewish citizens goes unnoticed. 
A quick note: it is also important to remember that most colleges also do not offer appropriate accommodations to meet the needs of autistic students. It seems that the liberal world of academia is the last beachhead in the war against ignorance towards those with unseen disabilties.
While the world marked Holocaust Remembrance Day, the Jewish Agency, which is now headed by Natan Sharansky (a human rights hero who stood against Soviet oppression), released a report dealing with global anti-semitism. It is at a height not seen since the advent of Nazis Germany. Sharansky writes about the growth of modern anti-semitism with the three D’s. Holding the Jewish people to a double standard, delegitimizing them if they do not live up to that standard and then dehumanizing them so it is not a crime to murder Jewish people once again. These 3 D’s are rampant within the world’s media, international organizations and yes, on college campuses.  But what does this have to do with our autistic children? Well here are my thoughts:
I believe there is a double standard when it comes to our children’s behavior. I have come to realize over the years that schools do have a very strict code of conduct for special needs children. Parents shudder every time the phone rings. Just waiting for that call that tells them their child is once again suspended for something they could not control. We joke that we are all survivors with PTSD, post traumatic stress disorder, from just waiting for the next detention, suspension or emergency conference at school. I still remember when Highschoolboy (now CM2) got in trouble for hitting a classmate in gym. The classmate by the way was cheating at a game, and no one would stop it even though CM2 had pointed it out. CM2 got detention. The cheater’s parents never even got a phone call. The school nurse was furious.The schools, she said, always blame the special needs child first. The problem here is that the adults who were supposed to be supporting CM2 also did not get in trouble. They just got told to watch him closer. They failed in their job both as far as his behavior plan went, and quite frankly in teaching ethics and sportsmanship to the gym class.
Another case in point involves collegeman (now CM1). When he was a freshman in high school, another autistic boy, who by the way has enough cognitive ability to drive and attend mainstream school, decided it was OK to hit CM1 and attack him whenever he could, especially when adults were not around.  One day this child attacked CM1, and CM1 ran after him yelling at him to leave him alone. The only interaction the adults saw was my son yelling at the other autistic student. They sent CM1 home for abusing a fellow student and nothing was done to the other child. The then vice-principal, who is no longer at the school, told me that even though my son said he was hit since no adult saw it they were not going to take his word for it. Do you think they would have said that about a non-special education student? Luckily CM1’s case manager went to bat for him and eventually it got resolved in my son’s favor.
I think another reason that there is a double standard for our children is that they are always being watched. My boys have always had a one-to-one. I figured out one day, that on any given day in the school that there were at least 5 adults there to make sure they functioned. Most students have one adult supervisor and in the high school they really are on their own. Only if something truly egregious happens with a regular education student does the administration actually learn about it. But nonetheless the rules are constantly applied to our children without question.
The second D, is delegitimizing our children. How often have you been told that our children cannot think, they cannot play, they cannot laugh, and they cannot be like everyone else. As I have written many times before, the psychiatric community, school districts, state legislatures have decided that our children cannot show empathy, (read below) they cannot lie, and they have no ability to understand humor. It disenfranchises them of their humanity. It takes away from them the right to try to strive in the world and to make of their lives what they will. To delegitimize someone is take away from them their very basic human right of self-determination. No one has the right to take from our children the future of their choice. But it happens every day. It is only recently in fact, that children with disabilities were even considered able to go on to high education; that they weren’t shuttled into remedial programs and sentenced to a life of menial labor and state dependency.
The third and last D is the dehumanization of the special needs child. There is a law before Congress to Prevent Restraint and Seclusion of autistic children. Please call your representatives and senators and make sure they vote yes on this bill. The utter terror of it is that this bill is even needed. Who puts a child in a locked room alone? Who puts a child in restraints? Who sits on a child and refuses them food? Who hits a special needs child? Who votes a child out of class? These are all actions done to thousands of our children throughout this country every day. None of which by the way, is allowable in dealing with regular education students. Our children are not seen as equal members of society when they can be treated like this with impunity. We need to stand up and shout from the highest roof tops no more, and to borrow from the lessons of the Holocaust, never again. (Since this post was originally written, the House of Representatives has defeated the bill, claiming that it interferes with State's Rights.)
I wonder what future generations will think of us. Will we be strong enough to fight the three Ds? Will we stand up and be counted? Will our children be able to turn to us one day and say thank you or will they want to know why we gave up? Will our children understand that we did everything we could for them? That we fought every step of the way? That we demand compassion be taught on our college campuses, to the future leaders of our world,  that all be thought of as human beings.
Philosophers say that you judge a society by how it treats it weakest members. Our children are about as weak as it comes, and while some things may be getting better I think we still have a long way to go.
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Repost from November 9, 2010
Kristallnacht, The Berlin Wall: Remembrance and Your Autistic Child
On November 9, 1938, the Third Reich unleashed the beginning of the Final Solution to the Jewish question. It began with a nationwide riot in Germany directed against Jewish businesses, houses of worship and persons. It was the beginning of the largest genocide in history. The day has been named Kristallnacht, or night of broken glass. It was given this name because so many windows were broken that the moonlight reflecting off the broken glass lit up the night sky as if it were day. Now what does this have to do with autism? Let me tell you.
The Nazis philosophy was one of racial superiority. Persons they considered less than human were targeted for expulsion, ghettoization and ultimately for death. The reason that this resonates for me so personally is that while the Jewish people were nearly wiped out in Europe, the Nazis began their campaign of racial evil by eliminating the disabled. I suppose then for me this is a twice important day of remembrance. Being the parent of Jewish children lends itself to one kind of acknowledgement especially in the age of Holocaust denial, growth in virulent anti-semitism, and new or threatened genocides, but as the parent of two autistic children, today lends itself to another journey. The journey of remembering that throughout history the disabled have been viewed as less than human,  less than important, less than worthy of support, education, or even life.
While I have been on this journey with my children, we have come across all of these attitudes. I remember the woman who said my children were not entitled to a public education because they would not go to college.(Little did she know) I remember the people who referred to our children with a derogatory name when they brought them back in district to attend class as inclusion students.  I remember the parents who made excuses that they couldn’t have play dates with my children, or just kept making up excuses to change the dates until I gave up. I remember that my children were never invited to birthday parties. I remember that my children were picked on in school and no peer stood up for them. I remember the rabbis who refused to bar mitzvah my children. I remember the religious schools that would not educate them. I remember the special education teacher who told my son he could never be an actor because of his autism. I remember the college Dean who continued with that stupidity. I remember many things.  I remember ignorance and hatred and man’s great ability for harm.
But then I remember, the special education director who set collegeman on the right path. I remember the special education teachers who worked with both boys day in and day out to make sure they learn. I remember the therapists, and psychologists who worked year in and year out with them. I remember the sports coaches who helped them with their agility and gait. I remember the children who decided to help the boys and were kind to them. I remember the rabbis who changed the rules so my boys could enter Jewish adulthood. I remember the disability director at the college who made sure that collegeman received the support he needed to be successful. I remember the phone call about the high school bowling team so CM1 could find something positive in a very hard year in school. I remember those that take pride in the boy’s successes and wish them well. I remember that right now at this moment my children are growing, developing, changing and progressing. I remember that nothing can stand in their way.
 But I also remember that most people do not understand autism.  (It’s why the boys’ names are never used in this blog) I remember that most people are uneducated about any kind of disability. I remember that in hard economic times it is persons with disabilities who suffer more than most. I remember it is the disabled who have a higher rate of unemployment or underemployment. I remember that Princeton University is fighting a lawsuit brought by a student who wanted extended time on tests, saying that extended time dilutes the value of a Princeton degree. I remember the defense’s position in a murder trial saying that the victim because he was disabled had less of a right to life. I remember that the laws in place for educating people with disabilities do not apply to post-secondary education. I remember that insurance companies can deny your healthy child coverage because they have autism.  I remember a little boy with autism in Florida voted out of a classroom and the school board that reinstated the instigating teacher. I remember that despite laws protecting persons with disabilities we still have a long way to go.
Today is the anniversary of Kristallnacht. But it is also the anniversary of the destruction of the Berlin Wall. One anniversary is to remember the greatest evil. The other is to remember the march of freedom, democracy and the belief in human rights and the humanity of all persons. The great irony is that these events happened to have occurred in the same place just decades apart. I submit that if the German people could overcome the legacy of Kristallnacht and  to have ended up in the forefront of the fight for human rights, than we, the people of the world, have no excuse to not forge ahead. We the people of the world need to remember that the fight for the rights of the disabled is the fight for the rights of all humankind. We need to remember that history judges societies not by its wealth but how it treats its weakest members.
So today we remember. We remember those that died because of who their ancestors were or because they were not born perfect. We remember those that died in the march towards freedom and the respect for human dignity. We remember and give the faceless a monument and a name (Yad Vashem). We remember so we can fight on. We remember to fight the fights that are worth fighting. We remember because our job is far from done. We remember because our children are counting on us.
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Repost January 18, 2010
If I am Only for Myself What Am I: Tikkun Olam and Autism
If I am not for myself who will be for me;
If I am only for myself what am I;
If not now when?- Rabbi Hillel
It is a Jewish tenet of faith to make the world in which we live a better place. It is called tikkun olam.
Don’t you just love those know-it-alls who say that persons with autism are incapable of caring about others? That those with autism spectrum disorders are so self-involved they do not know that others even exist, that others have feelings, and that others have desires or needs. Actually I would say that they are describing most materialistic self-indulged people in our modern consumer driven society. I would also hazard a guess that these materialistic narcissists are not persons with autism.
I don’t know where it comes from that the professionals who work within the autistic community come up with these hard and fast rules. There is such a varied spectrum of characteristics that if you know one person with autism you know one person with autism. You know how autism effects one individual and that doesn’t necessarily apply to anyone else on the spectrum.
 That the powers that be think that our children lack the capacity to participate fully in society, and being charitable is a part of participating in society, is insulting. A large part of me thinks that after all these years of dealing with the psychiatric world that it’s the experts who are more of the problem than the solution. Look at the hullabaloo about joining aspergers and autism into one DSM. The psychiatry community wants to make their lives easier in dealing with a disability that has so many exceptions and changing characteristics, the actual person with autism be damned. It’s like the disabled person is not important in the decision concerning how they are to be defined. Talk about a civil rights violation. I’d like the psychiatric community to tell any other community (ethnic, religious, sexual orientation) how to define itself and see if they can get away with that. Bet the answer would be not be a positive one.
I can tell you that my aspie boys spent this morning loading and packing medical supplies for Haiti. A few weeks ago they loaded medical supplies for Africa. Last week collegeman gave away hundreds of dollars of his book money to Save Darfur (we had to have a talk about that). Highschoolboy likes when I give to the ASPCA and Smile Train. Charity is a way of life for us. Anyway, this morning was a success. Since CM1 and CM2 had just been there a few weeks ago, the director was well aware of who they were.
Hubby couldn’t figure out if the boys are so identifiably different than their peers that a trained medical professional can see the autism right away. That one I really can’t answer. I know that the boys will always be different, but how identifiable I really don’t know.  Honestly I am not sure I care at the moment. During the Africa charity drive the director immediately took collegeman under her wing and started giving him jobs.  What we found was a kind woman who, if she knew or saw that they were different immediately honed in on their skills and put them to work.
Today, since the boys were very familiar with the layout of the warehouse they were the champs. In fact, there were teenagers there who would turn to collegeman and get him to help them. We think it’s the facial hair. I understand one of them even called him “sir.” Now that’s cute. CM1 used to do that to teens with facial hair when he was in middle school too.
The best part was that in the middle of the tumult of packing the medical supplies, CM1 has a discussion with the director of the program about chaos theory, how it applied to what they were doing at the moment, and how if there were less volunteers they would be more efficient. Leave it to him to try to figure out a way to make things better and to throw a scientific conundrum into the middle of it. (I told you he channels “Sheldon” on a daily basis.) She responded that it was OK, and that she liked all the people and that she could handle the hubbub. Never heard if he let it go at that, bet he didn’t. I am sure hubby either intervened or she gave CM1 another project to do to get him to shift his attention.
I have to tell everyone CM1 makes me proud. He may not really understand not to give all his money away; it left him short of cash for his books. Well, not really, I bought them for him. He was supposed to have used the money from the summer for his books. Trying to teach him a little about taking responsibility since so many of his peers actually have to work to afford college. So I wanted him to understand that his money has to go for some things associated with school too. But how can you punish him when he gave his money to charity. He didn’t spend it on a video game; he gave it away to save lives. So I let CM1 earn money doing chores over vacation to work off his books.
I am also not allowed to throw away any old clothes. Both CM1 and CM2 know about the local community center that takes old clothes and gives it to those less fortunate. CM1 during high school used to try to collect food for their food bank his freshman year. So we also have to give them any food periodically. If there is a food drive, clothing drive, money drive, both of the boys are participating. Both understand their obligations to the world at large. Both know that they are members of society at large and that membership comes with obligations.
I wonder how many neurotypicals, the ones psychiatrists say are just fine and without issue in society, spent their three-day weekend helping others. I don’t care what they decide to do with the DSM. I have decided that these psychiatrists are not going to define my children as to who they will or will not be. It is a Jewish tenet of faith to make the world a better place. We call it tikkun olam. I am going to let this righteous path and obligations to society define the boys. I am going to let Rabbi Hillel define the boys. Then ultimately the boys can define themselves. 



Until next time,

Elise