|You never hear a parent of a mentally retarded child say, "He's so great, it's just the retardation that is taking him away from me." You don't hear people talking about mentally retarded children saying that they are locked up inside their heads because they cannot understand certain concepts.
I normally lurk and stay out of these conversations because I am not autistic and neither is my child. However, you brought up a point that is relevant to my situation and I thought I could maybe put in words how this statement is not entirely true- at least, not always.
My daughter has a rare chromsome disorder. I feel somewhat the same way about chromosome disorders as many here feel about autism. That it is not bad or wrong for people to be different, that it is our society that forces the separation between "normal" and otherwise, and decides who is okay and who is not, rather than striving for inclusiveness and acceptance whenever possible. I too watch parents-to-be express horror over the possibility of something being wrong with their baby- and unlike the autistic community, which only fears the potential for a prenatal genocide, it actually happens to children like mine, whose chromosomes are abnormal, every single day. In fact, I've had to deal with a pregnant mother in the 3rd trimester coming to our parenting chromosome disorders SUPPORT group to get support for letting her baby die after it was born from a relatively minor defect because in her own words, while she would have definitely saved it if it was normal, she didn't want to save a baby who would be mentally challenged.
My daughter is too young to be pronounced "retarded" but it's clear she has delays in all areas, including cognitive. Do I love my child more than my own life? Of course. Would I have had her, knowing everything I know now? Of course. No question. But do I think that this chromosome disorder is, essentially, her
? The soul, the persona, the spirit, whatever you want to call it? No I don't. I believe cognitive/mental disability can be exactly like physical disability. Not WHO or WHAT you are but, in a way, a condition that is perhaps not masking or "locking you up" but making it much more difficult *in the world that we're in*
to express 100% of what you are thinking and feeling. I actually think mental or cognitive disability is a form of physical disability, indeed many times it is. I can see on an MRI that my daughter's brain myelination is delayed. Others cannot see but know their child's "retardation" is caused by a lack of oxygen at birth, a severe trauma, a lack or excess of genetic materal. All of these things are essentially physical when you boil them down, and therefore IMO actually DO, in one way or another, hamper the individual's freedom to develop, communicate, react, or explore in relation to this world we are in. Not a fairy tale world where everything they could possibly need to level the playing field is available- but THIS world.
So while I think it's extremely important to use respectful terminology which does not include implying an individual is "locked up" or "taken away"- I think saying that it is NEVER okay to imply that ANY child could be happier, or at least their life be easier, without the autism- or mental retardation- and that therefore you wish they didn't have it- is a little shortsighted. And that's a really long winded way of saying that actually, some parents of MR children do believe that the MR is not who their child truly is, that inside there is a soul without any cognitive delay- and while we love and accept them fully we may also wish that the MR wasnt' there, and believe that our children would be the same wonderful person without it, and there's nothing wrong with that as long as we're not working day and night to "cure" them at any cost to their health and happiness. But her delay has taken a part of the communication away and made life harder FOR HER- not just me. It's not the same thing as autism but then, autism isn't all the same, and I think that's where the conversation halts. I know children with my daughter's chromosome disorder who are also dx'ed autistic. Are they, or is it a coincidence that their particular constellation of chromosomes causes them to behave in a way perceived as autistic? Especially these individuals with severe genetic disorders, who should be speaking for them, if not their parents, or whoever spends day and night loving and caring for them? It's as if once the dx of autistic is confirmed, regardless of any other mitigating factors, including severe vaccine reactions, genetic/chromosome abnormalities, or any other situation that can "cause" autism OR autistic-like behaviors, some people believe that no matter what, it has to be positive or it's anti-autism. Isn't there even a tiny gray area where this actually does suck for some people- and I'm not just talking about the parents- the actual affected person?? Is there any other condition or "disorder" that every single individual affected by it agrees and feels the same about having? Or if, as some say, it is a part of their intrinsic being and personality to be autistic, without any environmental factors, isn't that different than someone with known medical historty that has affected them neurologically?
sorry this got so long, and I really hope it came out in the tone I wanted it to, which was trying to understand lots of really complicated ideas and feelings more deeply. thanks to anyone who got through that!