Even before the existence of Autism Speaks, there were issues between parents of Autistic children who are severely affected, and those "closer to appearing normal" adult HFA's. Autism Speaks,in my opinion, has capitalized on this divide. The chasm is wider and uglier than it ever has been. If we can bridge that divide, Autism Speaks WILL lose their power [and the monies that could be used to truly assist Autistic people. If we don't,,it will only get worse.
How can we unite? First, though most parents of autistic kids love their children and will do anything for them, for many,taking care of their children is super hard,super frustrating work. And scary. They have REASON to worry about how their kids will be doing once they, the parents, have died.
They are beat down by all of the judgements on their parenting. Parents of NT kids worry about if they are raising their babies in the way that will be best for the child. We all worry if we are being to strict,too lenient, that we're depriving, that we're spoiling, that we're pushing too hard or not enough, and on and on. When you are the parent of an autistic child, those worries are multiplied a hundred fold. I am an Autistic parent of Autistic kids and Grandkids. I understand them in many ways that NT parents of Autistic children cannot, yet it is still so hard making decisions about their welfare.
Also, we need to understand that though we understand their kids in ways they cannot,that nobody, nobody, understands, loves, or will sacrifice like a loving parent. To imply otherwise is pretty awful.
We also need to acknowledge that most parents of Autistic children not only love their kids HUGELY, but that so did/do some of the parents who snapped and hurt or even killed their kids. We need to acknowledge that sometimes, though WRONG, from the parents sick perspective, they WERE NOT thinking of their kids not being worthy of life, but that they were honestly believing that they were giving their own lives in order to prevent their children from suffering.
We need to acknowledge that these parents [ you know,the people who, if they turned en masse from Autism Speaks that b Autism Speaks would no longer have the power they now do] do have some pretty overwhelming challenges. That does NOT mean that they consider their kids 'less than". It means that they need more support than most of them are getting. We can and should be providing that, whether it be by mentoring their kids, bringing over a casserole, volunteering to do a little house cleaning a couple hours a month, or listening to them when they are crying in exhaustion, fear, or confussion about how to be the best parents they can be.
I don't want to make everyone angry with me. Really. But sometimes it feels as though we are pushing these terrified parents [they have seen the autism Speaks commercials] straight into Autism Speaks arms. Once there,how easy to take their money ["they say it will help my baby"] to turn them against us,considering us mean people, who,like so many others, condemn their parenting, while trying to put an end to this "wonderful organization who really cares about my child."
Can't you all see what's happening,and that WE are the only ones who can change it?
15 Apr 2014, 2:20 pm
