So as many of you know I have ASD (Autism Spectrum Disorder)being as such I have really involved myself lately with different groups for people who have Autism. I have something until recently called “Asperger’s”. I say until recently because they have now changed it from “Asperger’s” to “High Functioning Autism’, I still refer to myself as an Aspie as it has become a part of who I am since high-school. I also have ADHD and OCD.
So now that I have given a little background, I want to say I am getting REALLY pissed when it comes to parents in these forums. MANY of them feel like they can speak for us or on our behalves on how she should react or be feeling in a situation. I get that many are trying to be helpful, but you really aren’t, it feels more patronizing, like we can’t make our own decisions. For instance when we see an injustice and start to speak on it, they will say to just ignore it or let it go, or if a new law is passed and they say something like “well it could be worse”. NO! I get most groups that deal with Autism do not want drama and for that I am glad, but we should also be telling parents who do not also have Autism to sit in the groups in quiet observation!
These groups are designed for us to cope with our everyday lives, with others who know and understand what we are going through. Just because you THINK you have an idea, just know you don’t unless you are on the spectrum, you will never know. When we reach out for advise or even an ear, we are reaching out because it is supposed to be an ear from someone who also has Autism and how they deal with it in their lives. Not some super mom or dad who thinks they have Autism down pat and knows everything now because their child is autistic, believe me when I say this, “you could spend 50 years, day in, day out and still not even come close to understanding that one autistic person, let alone ALL of them and lumping them into a group”.
MANY of us can speak for ourselves when it comes to what we want out of life and how we feel. The problem is because of people like you, you take away our power to speak out and make change. The other issue I have noticed with parents in these groups are they either say you “pass” to well that they don’t think you understand what it is like for their child or you don’t pass at all and they feel the need to defend the person even if they don’t want it. In either capacity neither are ever taken seriously!
This is NOT to say that I am ungrateful you have taken an interest in autism or your child, but seriously when it comes to us speaking to one another, your input is not needed. Many times we allow you in these groups so you can ask questions and learn from us what it is like, not to give input on what you “think” we should be doing about something. So if your are a parent of an autistic child, next time if you join a group feel free to read, learn and ask, but DO NOT interject, because we got this! If you want that kind of group then join a parents of children with autism group. Your opinions will be more welcome there, leave our groups and discussions for us please, because for many of us it is our ONLY escape, from a world that already doesn’t understand us enough. I know it’s a hard pill to swallow, but someone has to say it because you guys are honestly fucking up what little joy we have and our only escape away from the rest of the worlds bullshit! Thanks!