Saint Makers

There seem to be individuals who think that their autism is the only kind of autism. That their perspective is the only one that should be heard. I disagree.

While I completely agree that some things need to remain private. It seems that these individuals don't want you to say anything about autism that isn't rainbows, unicorns, and butterflies. Oh wait...unless your talking about those evil ASD parents who share about the struggles in their home.

There seems to be individuals that harbor a lot of resentment towards their parents for the therapies they received. Perhaps these individuals would be as accomplished and vocal if their parents hadn't put them in therapy. Perhaps their parents were being selfish martyrs when they attempted to help their children function in the world.

That's right. If I help them enough to make them resent me and bad mouth me publicly...well I guess that's parenthood;D I can accept that. But, my kids seem to really like me....because I'm awesome and shit;D 

They say we are selfish martyrs. But, make it clear that they demand us to have behavior of saints. We aren't entitled to express ourselves unless its about how wonderful everything is. Personally I think that is rather unhealthy. Some of us are living in chaos that consumes our days.  We need to know that we aren't alone. The feeling of isolation isn't going to make things better. 

The haters could spend their time making sure children like mine will have access to govt aid, services, and activities, they could be mentors to ASD children. But, for some reason they choose to spend their time critiquing ASD parent like some self righteous Sanctimommy. 

And its just getting worse. Now we can't even be congratulated when our child succeeds because its not about us. But, I don't get that because NT parents are allowed to be proud of themselves when they take a struggling child and help them complete high school. Yet an ASD parent can't be proud that they got their child into a therapy that is working for them. Could you imagine telling that NT parent, "You can't take any credit or pride in the fact that you helped your child stay on course and graduate. All you did was register them for classes. They did all the work." No you would NEVER say that to those parents. Why? Because its a dick move. Yet that's what some people in the autism community have done to ASD parents. And guess what...its a dick move too. 

Happily enduring the constant ridicule

 I can't do anything to stop the constant stream of parent blaming and bashing. So I choose to make fun of it. Which is always the best way to happily endure constant ridicule.

There are many things that I agree with autistic adults about. For instance parents speaking about their child, in front of their child, as if they aren't there. I have fallen into this a few times. For example when we go to the psychologists. I try really hard to make sure I'm not doing this. I can tell my child is uncomfortable and upset ....and it breaks my heart that he can't add more to the conversation. But, his communication is so limited:( No one wants to feel like their voice isn't being heard. Autistic adults remind me that he needs to be in the dialogue. And when an autistic individual is not, I'm sure that this causes many to harbor resentment towards their loved ones. It's good to be reminded that these simple things can dramatically improve our relationships with our autistic loved ones. I don't want my children to grow up hating me.

There are many autistic adults who advocate very well for others. I am certain they are good people with good intentions. They are trying to help. Which brings me to my next point of agreement. Silencing autistic voices is not ok. They have every right to voice their opinions. They have insights which we do not. So they need to be heard.

But, I also reserve the right to disagree with them.

My biggest issue with certain advocates is that they lump all ABA together. While I do agree that ASD children shouldn't be taught complete obedience. I understand why some parents send their children to this sort of therapy. Its not so their child will become a mindless obedient person.  Learning social skills and self help skills, etc.  may mean their child could live independently someday. These are lofty goals that not all of my children will achieve. But, I support these parents trying to give their children that. I understand that they are doing it because they love their child. And want them to have the best life possible.

I wish my child could be in this type of therapy. However access and finances make it impossible. Our ABA is an hour every few weeks. They basically help me come up with interventions to help my child. We have an educational goal of using a normal speaking voice instead of whispering when he reads. I work on this with him. But, I am honestly not too worried about it. The goals I really care about are minimizing outbursts, self harm, grabbing himself inappropriately, and his fear of dogs. Many of these issues could lead to him being institutionalized some day. My goal is to make sure that doesn't happen. But, I worry. My child's fear of dogs has, at times, made him unwilling to leave our house. We work on this issue at home, away from the presence of dogs. But, even the prep work doesn't help that much. When we do manage to get him to go to a place like the park. Someone might have a dog. Or worse. They don't follow leash rules and the dog charges my son. Further reinforcing his fear. Yes, we try our interventions that our therapists have suggested. But, most of the time he goes into a meltdown. And we all know that nothing can be accomplished during that. It's a long process that I wish we didn't have to deal with. So if ABA is unacceptable. What are we suppose to do? Nothing? I'm sure some people would say. "Let him stay inside. He doesn't need to be out in the world if it make him uncomfortable." But, I am not ok with that. That just makes him one step closer to being in an institution. How could anyone want that for my child? 


In the end I am grateful that there are autistic adults who advocate for others that cannot do it for themselves. I know they mean well. And I hope that they know that I mean well too.