B"H
Thank you Mahler5 and Lucie1 for your kind words. Oddly, 5-1 is my birthday on the Gregorian Calendar. It lined up with my Hebrew birthday when I turned 30! (First Sphenic number) It is interesting, if probably coincidental, that "5" and "1" both step up as I move closer to my birthday with such kind words, including what a "righteous dad" I would be. Not to say that there is any "hidden meaning" necessarily...
OK, well, my point was simply that I respect the purpose of the forum. If it is for parents, I am a bit reticent about intruding. I have been taken to task via PM (in a very kind way) by a parent of a severely disabled child, or child with a severe disability to be person-first, if you prefer. This parent is extremely kind, by the way. He/she is something of what many of you might call a "curebie". Now---please---respect what this person's experience is, just as you want your experience respected. Just as some of the well-intentioned things that parents and experts say may be very hurtful to many of you, so it is that some of the things that you or I might say could seem to be "politicizing" the Spectrum to parents.
Thus, with all of the pains in my life, very few of which I have really shared with this forum, but which have been ever present, I must respect the fact that I have never been the parent of any child, much less a child with severe disabilities. My own experiences have been with a social and concentrative disability. And, my friends, it is a disability as well as a gift. It is both. And, to be fair, I love sunlight, I can drive when I want, vacation when I want (within economic reason), travel to other countries if I want (my reason for not doing so is connected with Asperger---the blasted plane ride---but I *could* overcome it), speak, walk, and do things that severely disabled people cannot do. Thus, I am in no way "severely disabled."
Now, I know that "Autism" is not the disability, but that there are other things that could come with it ("comorbid", I believe the word is). You know that, and I know that. However, many parents do not understand our redefinitions of terms. Defining "Autism" is a matter of semantics. How we DEFINE Autism is different than how some of the parents define it. I know a parent with a teen on the Spectrum. He was made out to be, you know, "on the Spectrum", to the point that I figured that I would feel like a Neuro-typical compared with him. As it was, when I met him, unbeknownst to me, I did not even know he was on the Spectrum until it was pointed out to be whose kid he was. He seemed like...OK, here goes, sorry to put it this way....a "normal kid," as my still residually Neuro-centric mind would understand the term. He was clearly an "Aspie", probably less so that I am. Yet, he was "Autistic". Wow! So, how was I a "Neuro-typical" all of these years and he Autistic when it seems like we are both pretty similar?
Yet, the experience of some of the readers is very different. Some are going to see the world differently. In the case of the one parent with whom I communicated via PM, I encouraged this person to have no association with John B***, the Judge Rottenberg Center, and to be extremely leery of Autism Speaks. Now, the last organization should not be compared with the first two...but, you get my point. So much of the conversation focuses on the extreme end of the curve, those with severe disabilities who are classed as Autistic. What is in a word? How do we define people with language? It is all very confusing. This parent's son cannot speak, and is in extreme pain as he/she described him. What can I say to that? What is my "personal liberation" to this parent? I would be a mocker if I even dared to intrude on this person's broodings.
That is why generally I do not post on this thread, except as a response to others. This is the parents' perspective. If they want to take me to task, to ask how I dare to comment when I can do all of the things that I do and their child cannot, then they may do so on my own threads. They are welcome to do just that. I would not intrude on theirs. This is a consideration that I afford to them.
And, frankly, those on the more "Autistic" wing of the Spectrum are free to take me to task as well, while I will refrain from intruding too much on to "Spectrum Haven." One young lady described how she was mistreated by a teacher in the computer lab. She is under 18, and cannot freely protest. Now, this teacher apparently figured that her status as a parent of a child on the Spectrum gave her all of these rights over others. Yet, the young lady to whom she addressed herself taught herself Calculus! Such arrogance on the part of anyone to address her like that! Yet, from my own experience, while I have experienced mistreatment, I do not believe that I have had this type of experience (except at Chapman University, which leads to a whole other discussion about teacher credential programs). Thus, I generally avoid the "Spectrum Haven" thread as well. I have respect for others with experiences I have not had. I do not feel that it is fair of me to intrude.
My experiences have been of social limitations more than other types of limitations. I cannot really be in crowds. I cannot develop long-term relationships with ease. Friendships seem to be on a one-on-one basis. I tend to have obsessions. I will spend hours in the library reading about them. They tend to last for years. And, I really do break license plates down in to primes. Finally, I probably really do have a 30 IQ point differential between different areas of my own intelligence.
So, I am on the Spectrum. And, to be honest, I believe that I may be more "Autistic" in less obvious respects than some people who are recognized as being on the Spectrum. Now, to be clear, I am using the term "Autistic" in a *certain* way. My use of the term does not imply a disability, or a desire to have the special services that others desperately need, but which I can live without, and which I would never *DARE* to appropriate from those that truly need them. I am simply stating that I am more out of the norm in certain key areas than some of them are (albeit without their horrendous experiences, and any right to detract from their dignity).
I am not in the category of being in severe pain, or being unable to communicate. Thus, I would never dare to post too much in either the parent's forum, or in the "Spectrum Haven", save for a few posts here and there. My purpose here is therefore limited to those forums to which it is appropriate. I recognize the rights of those on the parent and Spectrum haven forums to come on to mine, but I believe that I should respect their space. It does not have to be even, because I am not in as much need as many of them are. The sense in which I am on the Spectrum is different than the more severe experiences of many others. My one disability is workplace discrimination. That has been SEVERE in my life. I will recognize that one, for sure. It needs to be discussed as something that "HFA"/Aspie people might experience in a unique way.
Parents, let me end with this. The person with whom I have been communicating took me to task for the "LFA created for a Holy Purpose" thread:
http://www.aspiesforfreedom.com/showthre...?tid=11885
However, I believe that if that thread is rightly understood, it is key to what your experience could be. You must *BELIEVE* yourself that people are created with a holy purpose. You must believe it about yourself, as well as about your child. If you cannot understand the concept of a holy purpose, you will have difficulty understanding your own plight as a parent, and you will have missed your reason for being.
Autistic children are respected by the holy Rabi'im in Israel. They are respected because an individual life is the Universe to them. True Rabbis have this wisdom. False Rabbis, of whom there are too many, focus on building projects, money, social status, money, appearances, money, political power, money, praise, money...did I forget to mention money? Real Rabbis are precious, and derive their authority as righteous Tzaddikim from Moses himself. Now, don't let anyone fool you. Tzaddikim do NOT come in bloodlines (necessarily). Anyone can be one. Just, remember to follow your holy Purpose.
All the best.
