Autism Speaks and other groups have advertised April as Autism Awareness month. I think it is great to try to rally people up and try to make sure everyone in the community is aware of autism.
Recently Life on The Spectrum went out and poled people to ask them what they know about autism. The results were pretty bleak. And even if the goal is to make people aware of Autism what are we making them aware of exactly? That Autism exists? That we need more services? That there is an epidemic? That we need a cure? That parents hate autism?
I tried, I really did try to understand why some parents would say that they “hate autism”. I even became sympathetic for a parent because of the issues she was facing. I left a comment on her blog and then she messaged me telling me I was a clueless idiot. I suppose I tried to fit in with the other parents and that will never be. I suppose I tried to even understand their point of view. I tried to ask questions and I thought that if they have children who are autistic they might understand that I need help communicating. That I might need help understanding something. That they would understand I might be sensitive. Most parents were nice but I also got some very nasty parents calling me some very nasty names. It felt like grade school again and it almost made me give up my blog.
Let me side track a bit since I was recently told by an NT that since I was so late in being diagnosed I don’t really understand what it is like. As a parent I have had many moments of struggling and despair. My son has had issues his whole life too. The preschool thought he was mute. He smeared his poop for years and had major meltdowns and still sometimes does. He and I both struggle with communication. I had a meltdown related to the nasty names I was called by NT parents. Just because I blend in enough to hold down a job does not mean that I don’t understand what Autism really means. I struggle day in and day out, it isn’t that I just became autistic, it is that I just recently have a name for my struggles.
I think most NT parents want the best for their child. As a parent we always want is best for our child. We don’t like to feel helpless when we see them suffering. But as an autistic I understand that what an NT sees as suffering, may not be suffering to the autistic. I know not all parents are ready to hear that. But it needs to be said. Stop mourning for what you want your child to be. Let them be the child they want to be. Accept them. Help them be their “best, Autistic, self. This is no different (speaking in my parental role) from helping any child learn and grow to be the best person possible. This is no different (speaking as an Autistic adult and former Autistic child) from learning at a pace that is both challenging and not way outside the “envelope” of what works for you.”
I took that last quote right from the Autism Acceptance blog because it is so perfectly well said. They have claimed April back as Autism Acceptance month because we need much more awareness. Please see my recent Blogging and YouTube Journey through Acceptance if you would like to see some other wonderful posts about the topic.
I am done trying to fit in with other people. I am here to be myself. Yes I will try to communicate appropriately but when people are angry and saying hateful things I will do exactly as I tell my son to do. Walk away when you know that you will just become upset. It isn’t worth it. Sometimes people don’t want to hear the truth.
Yesterday I posted that I was trying to understand and was willing to cheer on other parents even when they are angry, I take it back. I can’t cheer you on when you are spewing hate and calling me clueless. Acceptance of Autism means that you accept me as a human being with thoughts, feelings, and a valid opinion.
I am not trying to “bully” you into feeling a certain way. You are entitled to feel how you feel. I tell my son all the time that he is entitled to feel angry, everyone feels anger, it is what you do with that anger that defines you as a person. If you choose to spew anger and hate on your blog that is your choice. If you choose to deny that you are putting that hate into the community because your blog is somehow your personal, private space I can’t begin to have a logical conversation with you. (In case that is confusing to you- this is the internet, everyone, your neighbor, your kid’s doctor, teacher, friend, the guy at the grocery store that you can’t understand why they don’t accept your child, could be reading your hate of autism) Maybe instead you should explain your frustrations and what you are doing to deal with them so that maybe it would be helpful to other parents or other people in the community who are reading your blog on the internet.
I can only hope to reach people that are willing to listen and to understand. I will continue to post how I love myself and my son. I will continue to post what struggles we have and what we have done to help ease our struggles. I will continue to post about how we must have acceptance, not just awareness.
The past week has been very emotionally trying for me. My husband has been a saint with being understanding of me. That is what we need acceptance and understanding. I can’t always blend in. I can’t always act “normal”. It is unfortunate that is what society sometimes expects.
When I saw a little boy at the store yesterday with headphones on I got excited and started pointing to him and telling my husband “look it is a younger version of Sheldon”. I immediately realized this was not polite and could have been misinterpreted. I ran up to the mom and explained that I pointed because he reminded me of my son. She looked at me puzzled and asked why? I blurted out “headphones”, the child couldn’t make eye contact with me and of course I knew. The mom then explained he was autistic and the headphones were to block out the noise. I blurted out “I know”. I was not in a good place and was not doing my best at communicating but I needed to tell her. The mom (God bless her for being patient with me) said “You knew he was autistic?” I said “Yes, my son has Aspergers, so do I”. She then understood and introduced me to both of her autistic kids. I waved and ran away.
Acceptance is letting her son where his headphones in the store and not caring if people point and explaining them to some stranger that runs up to her babbling about the headphones. Acceptance is understanding that my son needed to put his head down in class to get away from the other kids. Acceptance is understanding I may not always say the right things. Acceptance is letting me be me. Acceptance is understanding we don’t like noisy, loud, crowded places. Acceptance is understanding we don’t feel as though we are missing out on anything when we avoid these situations. Acceptance is listening when we say we are happy being us and that our happiness is not measured by the same standards as yours.