After writing my reaction to Nazreem Bibi’s blog post, it got me thinking. Parents do need support. I am remembering back to the day I found out my son is autistic and how lost I felt. I had no support. I could have gone down the wrong path. Thank goodness I did not. This blog is for all the neurotypical parents of autistic kids out there.
My history as an autism mom
I was right there with you. My son was diagnosed as autistic. I did not know where to turn to. I did not know what to do. I did my research on the internet. I saw a list of signs of autism and saw my son did fit that category. When filling out the checklists, I realized bug was just like me. I first concentrated on getting him diagnosed.
After diagnosis, the neurologist did not have any information. He gave me a list of ABA therapists in the area, information from Autism Speaks and sent me on my way. I was even more lost than when I started. This new diagnosis was very overwhelming and I did not know where to turn. I wanted to help Bug the best I could.
Soon after this, I went to a special needs information fair (that’s what it was called) to get more information about resources in the community. I talked to the lady at the Autism Speaks table. I was old I “should not have bred” when I was asking about resources. This did not sit right with me so I had a strong dislike of them from the very beginning.
Other than that fair, I only had the internet to look for information. I joined several different “autism mom” groups. I noticed a lot of these groups were negative and that made me sad. Emma Dalmayne rescued me from these groups with the tragedy narrative.
My Journey to the Autistic Community and Understanding Parents
Soon after this, I was diagnosed and became an autistic advocate along side Emma and many others. I see a lot of hate from the autistic community to typical parents and visa versa. Its very scary. We all want the same thing. Acceptance of autistic children and adults everywhere. There are advocates that want to support parents and educate them. Parents cannot parent effectively if not supported. Some autistic adults may get upset at me for saying the parents need support. There is nothing wrong with your child. You did nothing wrong to cause your child to be autistic. They need to be supported to be themselves comfortably. Parents need to be supported so parents can support their kids to be themselves.
A little Education from the Autistic perspective
The term autism mom is when a parent cannot understand their child because they are a different neurology than their child. When they cannot understand their child, they tend to co-opt the identity. You are a parent of an autistic child. You cannot be a parent to a condition. You are not an autism parent.
Some parents say this is not what you signed up for. When you have a child, you take that chance that the child will have a difference. They may be LGBTQ, autistic or have any other disability. Support your child the best you can. Reach out for help.
A lot of parents want to beat autism. Autism is a part of your child and cannot be separated or cured. If a child is raised believing that autism needs to be beat, this can cause a lot of mental health issues. I grew up not knowing BUT I was different and my parents made me feel like I did not belong because of that. I was even in ABA, which left me with PTSD. Autistic adults want to warn you about the effect ABA can have.
I know no parent puts their child in ABA knowing it can cause PTSD and other mental health issues. They do this because doctors tell them its the best course of action for their child. Autistic adults are trying to educate parents so what they suffered does not happen to the next generation of autistic people. We are just trying to prevent them from experiencing the same trauma we went through. Having the right information can be powerful.
The same tragedy narrative causes some parents to seek out quack treatments they believe will cure their child. They need something to blame. MMS bleach, chelation, GcMaf and other dangerous treatments that harm children and vulnerable adults get used on them because their parents cannot accept them for who they are.
This can be because they are from a culture that views disabled children as inferior or defective. Disabled people are hidden from view. Being from that culture and the only thing you know that disabled people are bad, its hard to accept them for who they are. We understand it is cultural and we want to educate you and help you.
When autistic adults are educating on why the puzzle piece is frowned upon, some parents do get defensive. The puzzle piece symbolizes “until the peices fit” or “the odd one out.” The acceptable symbol is the infinity. Gold infinity is for autism.
I once thought the puzzle pieces were cute. I did have an autism license plate on my car. I was so proud of Bug and I wanted to show it off. I later found out what it symbolizes and adopted the infinity. I listened to autistic adults. After I did this, my children were much happier. I supported them more. I taught them to be proud of being autistic and thats just what they are.
As people, no one knows your children better than you but for autistic behaviors and traits we were your children. We are different because we are older. We did used to smear, rock and flap. I still rock and flap. I chew on a chewy. I did not know where my compulsion to chew was. I was not supported as a child. We all stim in different ways and we are constantly evolving.
To non autistic parents of autistic children, there are autistic people who accept you and just want to help. We do not want your children to experience what we did. There are a large group of autistic adults who are just angry and want to hate you BUT there are a large group of us who just want to educate you and want you as allies. Our only `goal is to help you help your children.
The only way to improve life for future generation of autistics is to reach parents. We need to repair this rift now before its too late. Please reach out. We want to help.
Much love and support,