Sometimes I get lost in our world. I admit, I begin to forget that many people do not have a positive outlook about Autism. I forget that they are hurting so much for their child or themselves as an adult Autistic that they say negative things or speak openly about how much they hate it. I forget that people do not understand and many do not want to understand the point of view from those of us who fully accept that Autism is hard, painful, and downright exhausting a lot of the time – even stirring up emotions of hopelessness, but we choose to be proactive. We choose to seek the positives and pull from our strengths and the strengths from our children. (Those of us who are parents.) I forget that some parents cannot see any strengths. I forget that they too are blinded and exhausted because they are living in their world secluded from adult Autistics like myself or children like my kids.
I forget how easy it is for people to generalize and stereotype all of us into one single voice.
I forget that all of us are capable of generalizing, leading into dehumanizing, ultimately manifesting minds that have created demons out of those who we have never encountered in real life. I see the words of those who “hate” Autism and I hurt. It riles up fear for my kids, it ripples anger at generalizations and the lack of effort people put to truly find out what they hate on, it makes me want to shutdown and never share any part of our life because it seems pointless. However, I refuse to react out of heated and unbalanced emotions. I refuse to turn this into anger against those who have hurt me. At this moment, I am taking the time to think about those of you who hate, who are angered, and who want to be heard for your opinions – I am validating you.
I am thinking of you and your world.
I am dismantling my urge to make you a blur in the face of millions and I acknowledge your pain. I stand here breaking the rules that have been laid upon me about being Autistic. I am empathizing with you. I cannot fully understand your position, situation, the deep-rooted causes for your lashing out, but I can understand you needing something to be angry at – I can understand needing something to hate because you do not want to have those feelings directed at your child. I understand that you love your child and you had expectations that have been destroyed. I understand not having resources, financial burdens, not knowing how to help your child, or worrying about their future – the reality for us is that Daniel may be living with us until we are gone. What do we do if something happens to us or when we are gone?
We have considered this and have come up with options – it is still a concern.
But I know your situation is different than mine. I do not live with you everyday. I do not know what is making your life such a challenge that you need to write such things. I do not know who you are or who you are surrounded by. I do not have a relationship with you nor do you have one with me and that makes it easy to make each other blurs. All I have is a glimpse into your life that you share online – I do not know if you actually behave or respond like this in front of others in your real life or if you simply need a place to vent your pains. I do not know, but what I do know is that you are out there and “you” represents one of the masses. I know that there are many of you out there who do not understand what it is like to be told how wrong, invaluable, and incapable of understanding Autism you are – wait, I take that back. Yes, yes you do know. You have been told that and the reason is because you have told many of us who are Autistic that we cannot understand.
The emotions rise, the injustice flails, the banners are raised, and anger is spewed all over the place with no resolution.
There are no empathetic discussions. We are silenced and you are silenced. We brew in anger because we have been bullied, and shutdown our entire life. Now that we can speak, the group keeps telling us to stop being social deviants. Yet, it happens to you too. We are shifting the social norms and when you get out of line with that the pecking starts. We defend ourselves and you defend yourselves and in the mean time our children are the victims. Our cause and fight for justice gets forgotten and lost in the vortex of emotions. It gets sucked into personal attacks and even more hatred on each side. Autism is not either -or, nor black-or-white. It is vast, unique to each situation and each situation carries it owns co-morbid challenges as well.
This morning I woke up feeling a great deal of anger and pain.
I have been struggling with all of the dissension that has been brewing in our community and many others that I share interests in. I cannot quite understand why there seems to be so much rage filtering through the internet, from Biggest Loser, the creationists vs. evolutionists, the church vs. the unchurched, even specialized diets and exercise groups are battling head to head over right and wrong, yes or no, with us or against us. It is not helping. However, this is the world we live in. We have not changed as humans – we are still playing the same social games and are still locked up in our own circle of yes men and no men without coming to the table with open-minds and empathetic hearts. So today, I sat my kids down to see what their feelings were because all of this is going to affect them. We are handing them this world and they need to be realistic about it. I decided to ask them how they would feel if they encountered people who felt this way.
Here was our conversation.
Me: Hey, guys I have something to ask you.
All: What is it mom?
Me: Well, I would like to know how this makes you feel when I share it with you so please, think about it and let me know. Some people think autism sucks, they hate it and they wished that it would go away.
(Audible gasp from Ariel and Joshua.)
Both: What? Why?
Joshua: No, no autism is great.
Me: Ok, can you tell me how you feel when you hear those words?
Joshua: I feel angry and I feel sad.
Me: Me too, buddy that is what I feel, but I am not sure I can exactly explain why.
Ariel: I feel upset, but I cannot explain why.
Daniel: What did you say? (Jumping on the couch and giggling)
Me: Daniel, some people feel that autism sucks and they do not like it.
Daniel: What does autism sucks mean?
Me: It means that they feel that it is a bad thing and they wished that there was no autism.
Daniel: I like autism.
Me: How did those words make you feel?
Daniel: (still jumping on the couch giggling) It makes me feel upset, I think.
Me: How would you feel if someone said that to you?
Daniel: I would say I do not like that. Why do they hate autism?
Me: Autism is different for every person. For some people it can be really hard for them and/or their children. Remember when you had rough days for weeks and weeks and could not tell us what was wrong? That was hard and you told me it was scary too. Think about your rough days now, do you ever wish you did not have them?
Daniel: Yes. I do not like them.
Me: For some people it is like that all the time and for all kinds of reasons they hate it. Do you think that when someone says they hate autism that they hate you?
Daniel: Yes, I think so.
Me: Why do you guys think that?
Joshua: It hurts our feelings.
Daniel: Because I am autism.
Ariel: I do not know why, I just feel that way.
After our conversation, I went on to explain to the kids that many people who say they hate autism are referring to the responses (behaviors) or the pain/suffering they feel or see their child/adult Autistic are going through.
I want them to understand how others feel and why they may treat them in certain ways. In our world, I cannot forget that it is full of different pains, heartache, circumstances, life experiences that cause us to have intense emotional responses. In the world we live in it happens to be very Westernized which, can be extremely polarizing – I am grateful for living in our country, but we are easily swayed by fear, conspiracy, marketing, and have a propensity to stay within our cliques. As humans, we have a tendency to cling to what we know and fear what we do not understand. As a society we have proven that we can make enormous changes for the better when a group stands up against injustice, we can make life for those suffering a better place when our focus is not on the blurs of the millions and our energies are spent on grabbing hold of those faces with tears saying, you matter, now let’s go turn our anger and hatred into something proactive and beneficial for all.
I will not groom my children to hate autism.
Even if we do not say the negative things in front of our kids, they feel it. Many of us who are Autistic are heightened to the feelings of others, but there are some like myself who cannot articulate what the emotions are – I simply feel negative or positive and learned growing up to automatically assume that negative emotions were caused by me and my nonconforming, different behaviors/responses. I will explain to my kids what their challenges are and seek ways to utilize their incredible minds in whatever capacity possible. I was not sure how much Daniel understood throughout most of his young life, I always believed that he understood and I tried my best to be positive. I will not sit here and say that this is an easy task, some days it is not. I have my own struggles.
I chose to seek out what I can do and what I can change to have a better quality of life.
If my kids struggle with emotions of hating autism when they are older, we will talk about it openly and they will have my full support. I will do what needs to be done to help them. It may require things that I would not want to do personally, but we will try. (Because they are not me.) However, the things that I hated had to do mostly with not understanding my differences. I hated and still struggle with my generalized anxiety, depression, PTSD, sensory sensitivities, executive dysfunction, but my Autistic mind gave me the drive and the passion to figure out what was going on in my mind. So do I hate Autism? No. Have I hated feeling isolated and alone? Yes. Have I been in great turmoil and pain because of social confusion? Yes. The main issue being that I was trying so hard to be someone I could never be. I hated that I could not live up to social expectations and stereotypes that caused me to hate being me.
So when I see people have such negative reactions it transports me back to those feelings of self-denial and self-hatred.
I am not saying that they are to blame, but that these are my triggers. I get where they are coming from, but I wish they would take a moment to realize that autism is not something separate from me or my kids. We cannot make it disappear. We are who we are and I have fought too hard through abuse, bullies, stereotypes, generalizations, and coming to terms with self-acceptance that to feel that trigger overcome me is upsetting. It angers me and breaks my heart. I wish that those who feel this way would stop for a moment and realize that their generalized statements are blurring ALL of our faces who are Autistic. You are forming us into a straw man. You are demonizing our attributes. We are not a disease, we are people. We are not invisible and those of us who can speak will.
Those of us who have no words can share insights and perspectives through writing devices, art, music, poetry; we can share some knowledge about autism.
Are we experts on your kids or your situation? Absolutely not, BUT some of us are willing to hear you and try to understand. I cannot speak for the whole community, but I would venture to say that MANY of us would be willing even to the point of letting go of past pains and destructive words just to be able to come to the table of discussion with open minds and empathetic hearts. This CAN be the world we live in. It is the world I am creating for my kids. How many are willing to do this for the sake of our kids and for the sake of adult Autistics who need to be seen, heard, and valued? Sigh … We need your support and many of us are willing to offer ours to you and do offer it through our writings. We are able to give you insights and understanding to a world that is different from yours. We have tried to understand your world – we have lived in it every day and we emphatically try daily. Is there a way to bridge this gap? That is not a rhetorical question.
Can anyone find a way to make this work? I seek hope … but I am also, realistic and understand human nature.
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