For the last several years I have attempted to become a member of the internet autism community. Whether it was through blogging, support groups and twittering. I have attempted to join in discussions and take part in the general idea of how to bring about awareness and acceptance for autistics in society. These last few weeks have shown me that quite frankly I have had enough. I am going back to why I began to blog originally..first was to give myself an emotional outlet, something I did not have for all the years that I sat alone raising special needs children and second to help others who may be beginning their journey in raising children on the autism spectrum. Whether it was the legal advice I garnered over the decades or the practical realities that I have learned how to live with, I felt there had to be something I could pass on.
But what I have found is that the autism community has quite frankly become a self-righteous, holier-than-thou, self-important place to be. The autism community has turned into another microcosm of the politically correct universe where you can only belong and only think yourself welcome if you follow one mode of thinking. Sorry but no. No thank you. No one tells me how to feel, what to feel or how to express those feelings. If what I feel deep down inside offends, I really don't think I care. Don't come back. The truth of the matter is that we are too afraid to say what is deep down inside of us because we are afraid of hurting someone's feelings. I am done with that. Not because I go out of my way to hurt someone, but I too am a human being allowed to my opinions and thoughts and perspectives.
Brilliant-compuer-sis said it best to me last night, when she said that one of the real reasons I went on the internet was to reduce my stress not to make it worse. So that is why I am going back to the original intent of this blog. I will not be partaking in the hullabaloo that is autism awareness month. I will not be partaking in the fight over Autism Speaks. I will not be partaking in the asinine fight over vaccines, genetics and the like.
I will not be participating in the fight about person first language either. If someone wants to be a self-advocate and define themselves by their disability go right ahead. I do not define my children that way. They do not define themselves that way. I do not need anyone's permission to see my children as human beings first and foremost, not autistic human beings. I do not need to define my children by their disability. I define my children by their gifts and their humanity, their heritage and their history. And no their gifts do not come from autism. Their gifts come from generations upon generations of writers, thinkers, artists and doers. They are who they are because for eons one generation after another in this family passed on their abilities. Autism may allow a different use of their gifts but it is not the deciding factor in who they are or where they come from. I also define my children by the places I want them to go, the future they have a right to embrace, not by identity politics which divides this nation.
I also have a right to say I "hate" autism if I like. I am tired of having to apologize. I am tired of others thinking they have a right to rule my thoughts, my mind and my perceptions. I am repulsed that there are some self-appointed, self-important, know-it-alls who aggrandize themselves into creating a rulebook for the autism community. Here is a response I wrote to a friend on facebook:
My son's quirks, traits, memory, intellect are what gives
him his personality . But the painful trauma filled stress filled
experiences are not something to embrace. These are because of his autism
and I will NOT accept nor embrace them. I
will not give up planning working and fighting to find a way for him to
be happy in the world. When he can't walk into a room and talk to
people he has known his entire life, when he can't experience the
totality that life has to offer, than no there is no way I am accepting
this. I am allowed to hate what causes this trauma and I won't apologize
not anymore. I can't help that you think I am talking about you and your son.
I am not. But when I see my child lack the
ability to enjoy the simplest parts of life and family I am so not going
to embrace what causes them this pain and sorry I do hate it.
I have had enough with people telling me that I need to accept that the boys stim or that they don't know how to talk to people or that they meltdown in strange situations. Life is harder for those on the autism spectrum. Well that is the way it is. There is a huge difference between accommodating a disability so your intelligence and your abilities shine through and acting so totally socially inappropriate that your behavior leads to derision. There are ways to talk to people. There are ways to be presentable. There are ways to function to make yourself heard. Is it hard? Is it exhausting? Yes. Is it fair? No it is not. Too bad. No one ever told you that life was fair.
This entitlement culture where you think you are owed something by virtue of your existence is obnoxious. You want something learn how to go about getting it. Work for it. Fight for it. Get off you butts and do something about it. But the most important thing you need to do is stop fucking whining. All you are entitled to in life is an equal chance, not an equal outcome. A level playing field. Some complain that there is still discrimination. To bad. Guess what, having disabilities is not the only thing society discriminates against. At least there are laws now that protect those with disabilities in some way, shape and form. You want something bad enough then find a way to accomplish this task.
Friday there were worldwide marches calling for genocide against the Jewish people. People celebrate the murder of Jewish infants by handing out cookies and sweets. They teach their children that the holiest duty is to kill Jews. They spread the age old lie that Jews use gentile blood to bake their matzoh at Passover. They murder rabbis and children on their way into school and their supporters hold rallies and call these serial killers glorious. They send rockets into civilian areas because what they hope to do is kill Jews. People blame the Jews for Jew-hatred instead of their own inadequacies. Antisemitic hate has been going on for 3500 years. It has infested our college campuses to the point that Jewish organizations have lists telling parents which are the least dangerous universities for their Jewish children. And by the way, unlike disability laws, there is no civil rights law that protects Jewish students on campuses from discrimination. What makes anyone in the autism community think that discrimination against them is anything special? Ignorance and hate are not only directed at one group. There is plenty to go around in this world. Try watching Hotel Rwanda if you don't believe me.
I am a 51 year old woman, who has spent the last two decades of her life raising her special needs children. There is still alot for me to do. Quite frankly no one is going to tell me how to do it or what language to use when I do. No one is going to tell me who I am and who I am allowed to be. Nor is someone going to tell me how to react to situations and what to feel. It is sheer unadulterated hubris that I have been reading from so many in this community. I don't know what's causing it. I also don't really care anymore. All I know is that I have no use for those who need to pat themselves on the back, tell themselves how wonderful they are because they have signed on to the "proper-perspective" in the autism community.
So come back if you are interested in practical pointers to help your children. But if you are looking for a fight from me, forget it. Don't even leave me a comment. It not be posted. It won't even be read beyond figuring out if you are someone worth engaging. Also don't tell me I am evil, awful, hurting my children, abusive, sick in the head, mental case (many have tired all of these already). let me tell you off the bat. Go fuck yourselves and the horse you road in on. I have more important things to do and much more productive ways to spend my time.
Right now I need to figure out how to find my oldest a job so he can build job skills. A job where the people understand that he has issues and are willing to work with him, the job coach and us to teach him what he needs to know in life to move forward. Understanding and acceptance and working towards a real future, that is what is important. Not some politically correct language bullshit where some in the community instead of fighting the real cause of discrimination against the disabled decide that its our, the parents fault, for hating the emotionally traumatic, self-destructive, injurious and truly crappy parts of an autism disability.
So as of today I am gong back to fighting the right fights for my boys: societal acceptance, understanding and opportunity..the fights worth fighting... Join me.....
Until next time,
Some informative books on antisemitism:
A Lethal Obsession
Trials of the Diaspora
A Convenient Hatred: The History of Antisemitism