Really, mothers of children with Autism Spectrum Disorder (ASD) live up to their reputations of being pushy, demanding, and generally a pain in the neck. I hear it all the time from schools I consult in. "That mother is like a dog with a bone. She doesn't know when to give up," the school staff say in frustration. ASD moms respond in disbelief when medical professionals say that their children are not capable of learning, and they don't take lightly to strangers telling them how to raise their child with autism. I know all of this to be true because I too am a pain in the neck ASD mom.
ASD moms don't start out being confrontational. We start out looking for help, but when door after door gets closed in our faces, we have to learn how to fight back for our children. Autism moms get a rough deal. The only people who are really on our side are other parents of children with ASD, and even then there are opposing views on how we should help our children and which support options are the best. Schools don't want our kids. Just try getting a child with ASD into a government school. Family members often point the finger at you because you seemingly can't discipline your child, and adults with ASD criticise you for trying to get help for your child because they say ASD is part of who your child is and you shouldn't try to change that.
It's a case of picking who you want to offend the least. Any decision you make is going to get someone's back up. The reality is that we as parents and families of children with ASD are also affected by the condition. People who have ASD don't experience it in a vacuum. It is concentric in its impact, starting in the middle with the person with ASD. The first shock wave hits the parents, then the siblings, the grandparents, extended family, and friends. On the outer circles are schools, sports clubs, and medical facilities, followed by the general public. The least affected, with the smallest ripples, are the government policies and policy makers who currently don't serve the needs of our kids on the autism spectrum.
Since there is low awareness and understanding about ASD, autism parents are subject to judgement from strangers and family alike. We are all too familiar with the sighs, the rolling of eyes, the unkind comments, and stares all directed at our children. And while autism organizations preach acceptance and tolerance, and should continue to do so, in reality parents of children with ASD experience first hand what exclusion feels like. We learn early on that we will have to be our child's advocate and his or her voice. This inevitably involves having to be the squeaky wheel until you get the oil. We don't take this as a chore, but it does take its toll on our energy.
When encountering another pain in the neck autism mom, who comes across as insistent and commanding, bear a thought for what you can't see behind the scenes and get out of her way as she blazes a path for her child.