Monday, March 4, 2013

Different Autism Experiences And Why They Are Okay

*This post, like all on my blog, is written from a parent's perspective. It is not meant to infatilize Autism because parenting Autism is the primary perspective that I have.

I used to believe that motherhood, or parenthood, would be the great equalizer. The wonderful, hold that baby in your arms, end all, be all, equalizer which would end high school-eque cliquey divisions. I was wrong. With parenting comes more divisions such as breast versus bottle, co-sleeping versus crib sleeping, attachment parenting versus detachment (still have not figured this one out five years after my last baby), etc. There are, apparently, a lot of things which people can argue on how to be "the best" in the parenting game.

Then came Autism. Or rather, first came the signs of Autism, the ridicule of our parenting skills, the ridicule of our child (both are still occurring), and then the Autism diagnosis. "Finally," we thought, "a place with answers and a community." But I, and we, have been wrong before.

A dear friend of mine is fond of saying, "their Autism experience isn't my experience and that's okay." I've adapted this to my own way of thinking because it's so true.

For instance, we parents in the Autism community have a way of paying backhanded compliments to each other. Things like, "Oh, you're SO lucky he/she does that!" Yes, we might be lucky, but things like that reek of condescension, especially if it's related to verbal abilities. Your Autism experience is not identical to my Autism experience, but you know what? That's okay!

I do not feel that because Morgan is mainstreamed with a ton of supports that he is any less autistic than another child who is in a resource room or an Autism school. Yet, I've been attacked on message boards for not "properly" seeking out an education for my son. Just because someone feels that the best possible education for their child is different than my child's does not mean that I am doing something wrong. Their Autism is different than my Autism and that is okay.

A gluten free and casein free diet may work for some people who have stomach problems or allergies to those things. Guess what? Morgan does not have those issues and therefore did not benefit from going GF/CF. If this works for you, great. This is your experience and that's wonderful, but it is not mine.

I've been attacked for vaccinating both of my children (this happens outside of the Autism community, too). I have serious issues with this. I, personally, don't believe that vaccinations caused Morgan's Autism. However, I wouldn't outright attack someone else for believing that their child's Autism was caused by a biomedical issue. I do not like getting into debates with people who believe that vaccinations are responsible for their children's Autism because I feel as if no matter what I say, I'm wrong. Not all anti-vax people are this way, but I still steer clear of vax debates. Their Autism experience is not mine. That is okay.

My son has poor fine motor skills, but we have seen improvement with OT. If this does not apply to your child in either direction, that's fine. This is my Autism experience.

My son has zero feeding issues. I'm genuinely sympathetic if your child does. Honestly. My NT son refuses to eat half of the food I put in front of him, so while I cannot possibly understand food related sensory problems, I can at least empathize with how frustrating this scenario can be. However, if you write to me and ask me if my son has food problems, and I reply "no," please save the attacks. This is not our Autism, and this okay.

I've been spoken to with sarcasm because my son is toilet trained. I'm still taken aback by this. I have nothing but empathy for those parents whose children - no matter the age - are not toilet trained. However, I am not particularly comfortable discussing this either privately or publicly. Again, not my Autism.

Morgan has some self care issues. If your child does not, more power to you. This is our Autism.

Morgan has seizure problems, though they are not severe. I do not put us in the seizure bracket of things because I know how much worse things could be. I have seizures and they can scary, no other word for them. This is our Autism, if it is not yours, that is okay.

My son, identifies as - ugh, I hate labels, but for the sake of this blog.. - HF Autistic, but is not, in fact, considered a savant. I'm thrilled for you if your child or someone you know identifies as such.  However, this is not my Autism experience. If you are a NT reading this, just stop asking parents of Austic children if our children are savants. Or telling us that our children are secretly "brilliant." Any one of us who have had to go through the process of testing our children's IQs and been made to feel like crap do not want to hear this. You are not making us feel better, you are being condescending. 

 If you have great Autism related insurance for your child, my hat's off to you. If you have never had to battle an insurance company, please tell me your secret! This is honest to God not my, or more than half of the community's experience, so please share. Please, for the love of all that is holy, don't put yourself on a pedestal and act as if parents, advocates, or whatever you want to call us who are seeking out a way to pay for our children's supports/therapies are lesser than you. Some of us are going deeply into debt, losing homes, and, in general, flipping out and wondering how to provide basic services for our children. If this is not your Autism experience, just keep it to yourself. This is one area where I'm not willing to be nice. I think that I would be willing to sell my soul in order for each Autist to be provided with services they need. End of story.

I do not use chelation, bleach enemas, hyperbearic chambers, and a host of other things that some use to "cure" Autism... I don't support any of those things, or things related to them. If you do, sorry, this isn't the blog for you. Not to be rude, but do a bit of reading through my blog, or look at the pages I support to the right; none of them support these things either. This is pretty much another area that I'm not willing to debate. Not our Autism, not on my blog, not on my page, either. Pestering me about them will get you nowhere. Thanks.

Not everyone will agree with me when I say that I seek to provide life skills, coping mechanisms, and yes, some therapies, for my kid and not "cure" his Autism. I want what I feel is best for Morgan and to me, that is to not make him feel as if he is "wrong" for being Autistic. I don't expect his Autism to go away or be miraculously cured so therefore, I do not seek a cure. However, though I snark at groups of people seeking said cures in private (it seems a little unreal), I try to not do it here (okay, so I just did it) on this blog or on my page. Yes, you can read through this blog and find places where I am/was mad at Autism, but part of being a parent is being a hypocrite. At least this is true for this parent.

We Autism parents take enough grief from society in how our children act, how people perceive us as parents, and how people view our children in general. Why is it we feel the need to attack each other? Is it jealousy? Spite? Yes, I am jealous, at times, of parents of NT children, though I have an NT child. I am jealous that those NT children do not appear to having learning difficulties, speech delays, fine motor skill problems, etc. I'm jealous that those children, and even my own NT child, will have experiences which Morgan will not. Sometimes, in my lowest points, I will rail privately and cry. Okay, maybe I do that on Facebook, too. But I don't attack other parents, at least I try to not attack other parents, especially not other special needs parents. They cannot help their child's neurology anymore than I can help Morgan's. They cannot help their child's ability to verbalize or not, toilet or not, etc. Attacking or crying about this does not help.

Is this a projection of our own fears of not doing something right? I cannot say that I have never privately nor publicly questioned someone's approach to parenting an Autistic child, or a NT child for that matter. I think that this is a natural part of being a parent, or even being human.

Part of life is to have differing opinions. Part of being in a community is to support each other, isn't it? The attacking within the Autism community really makes me wonder, at times, how much of a community we have.

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