What if you were afraid to let anyone know that your child has Autism? What if the family doctor says:
“He can speak, he can read really well, he is very smart and intelligent but just flops and has some social skill and sensory issues but otherwise no one would really know so why share? Disclosure will follow him with his school record for the rest of his life. Do you want to put that label on top of him? What kind of supports can he get at school? instead he’ll be stigmatized and some of the support groups that the government can offer you they may or may not help him you should just pay privately.”
This is the kind of stuff I’ve been hearing lately from another parent whose son is in kindergarten at my children’s school and she knows that my older child is Autistic. She wants to know from my experiences how my son is doing and how the school is with his Autism. She wants to know if they’re making the right decision hiding the fact that her son has Autism from the school. I was not expecting the question and from my point of view I kept thinking about how the boy because my mind quickly races to what the child might be facing at school without anyone knowing. I can’t fault parents for trying to give their son the best chance and protect him from the other children and from assumptions the teachers are going to make. I just feel very uncomfortable with efforts to make a child be socially acceptable and as long as they are not rocking any boats then just don’t do anything. I worry that the child becomes a ticking time bomb of not wanting to make any mistakes and not be what people want him to be for fear of being seen as less. My 9 year old son already says “I don’t like the word DIFFERENT” and yes the statement is as loaded as you think it is.
So I’m listening to her I’m trying to be helpful and reassure her that all the fears the doctor said might be true for the other school board and another school but this school is very accepting, inclusive and most of all kind. She is worried that teachers might suspect something but what can they do to help him when he likes what he likes and is very inflexible. But if no one knows what they’re dealing with and also you’re constantly worried that someone suspects that you’re hiding something are you really making the best choice for your child? I have t o admit that as I am trying to be supportive I have some uncomfortable feelings because it sounds like someone hasn’t truly accepted that their child is different and that’s okay. Instead all efforts have been to try and normalize as much as possible. I really think that when your child has the label of high functioning or appears to be normal or neurotypical, all the effort to try to make them appear normal adds so much pressure on them to appear normal to do all the right things and to hide who they really are is very stressful.
I really feel uncomfortable when any sort of therapy or professional or teachers do things to try to make my son Johnny do what everyone else does and not appear different. It’s no wonder that my son always says, “I don’t like the word different.” I worry that people well minded people are making him feel shamed of his Autism and already are making it just seem like a completely bad thing. I think it dredges up feelings and I had when my little guy was little and sadly wasn’t meeting all the same milestone saw the other children so many negative emotions stressful emotions. I am not ashamed of my son being Autistic and I do not want my son to ever feel ashamed of who he is.
The thing is it’s easy to do when everyone is always focussing on all the things you can’t do and trying to help you do those things you can’t do instead of highlighting and congratulating you for all the incredible stuff that you are doing so well. Every time Johnny forgets to put something in his backpack and is reminded to go get it. Every time that he puts his shoes on the wrong feet and I ask him to try again. Every time that Johnny grabs a spoon to eat with when really he was supposed to grade a fork and his little sister notices and corrects him. All these little moments added together become something so big and negative.
You don’t want your child to think that you’re anything less in there in your eyes. That they are not measuring up and that they are not the child that you wanted them to be when you dreamed of having a baby and then held for the first time. If only people would think about how those thoughts or ideas and think about if it was about them. Hiding who he really is would make him feel bad. I think its sad that at a very young age making kids feel ashamed, frustrated and angry about being different. Isn’t this something that we as parents are supposed to start dealing with when they’re teenagers and not when they are 6, or 9 years old?
So now I find myself trying to listen and advise a new friend of how do you raise a child with Autism and have them go to school. I thought back and I remembered that my husband and I thought that in order to truly help our son and move him forward we needed everyone on our side and more importantly HIS side.
It’s not going to be just Mommy or Daddy that’s going to help him. It’s going to be every single professional that he responds to in his life.
True our son was nonverbal at the beginning but other than that he seemed pretty normal to most people he could’ve been mistaken for being mute. Johnny is handsome and when he decides to focus his attention on someone he is very engaging and draws people in. But again we really believed that it’s not just going to be me or my husband or one therapist that is going to move him forward. It’s going to be every single professional that Johnny let’s help him so it doesn’t really help him if we hide it.