My friend Ellen just wrote something on her blog that really hit me. She came here from another country. More importantly, she came here from another culture. In her post, she vividly describes the experience of trying to learn a new culture while also struggling with others’ perception of her as an outsider because she is a little different. I can relate to all of this. I can feel the pain.
I have often said that to be autistic is to live in a constant state of culture shock, even in one’s own culture. This should be easy to see just from the diagnostic criteria. We struggle with the nonverbal aspects of communication, and cultural norms are communicated nonverbally. So many of us feel out of place, disconnected, and deeply lonely. It might seem strange to say, but I’m grateful for Ellen’s experiences because I believe it’s the reason for the times she stood up for me before she actually knew me. I also believe it’s the reason she encourages me and treats me with respect, even though she may not always understand me.
I never really felt connected with anyone until well into my adult life. Even then, I had a hard time identifying who was an actual friend. Most abandoned me when I started sharing my autism diagnosis, but I found new friends in the autism community. I also found freedom from the constant and exhausting effort of trying to fit in. Most of my friends now have children like me. They don’t always understand me, but they want to because they see their kids going through the same things I describe when I talk about this. They help me when others misunderstand me or try to push me away. They do this because they get the pain. They get it because their own pain comes from seeing the very pain of their children.
Toward the end of Ellen’s post, she gave a list of wishes. I especially relate to this one: “I wish it meant my voice and experiences were considered — even when not understood — and that there was a real desire to understand.” I wish this could be true of everyone in this world. Can you imagine how lovely that would be?
I wish I knew how this could happen without all the pain.
…with a heavy heart. I’ve been through some challenging stuff since I was last active. I’ve been told I’m a lot less optimistic, and that might show in my posts, but I do hope those of you who have found my blog helpful in the past will continue to find it helpful. I believe very strongly that it is necessary to be real, as you never know who might be struggling and feeling alone, so, I’m starting again in much the same way as I did in 2011.
At this stage of my life, I’ve built friendships and have a pretty solid support system. My friends are mostly women, though, which has lead to some interesting discoveries that I will want to talk about in future blogs. Today, I’d like to talk about how eye-opening it was to learn how women are treated in various contexts and just how many of my friends have experienced some form of sexual assault or related misconduct (I’m actually honored that they trust me at this point).
An example that I’ve been discussing recently has been the situation for female inmates in Arizona. Currently, they are allowed 12 menstrual pads per month. (For any male readers too embarrassed to ask a woman, that’s ridiculous.) A measure was introduced to change that, and it moved forward a bit, thanks to the testimony of women, but was ultimately shot down. This decision was not made by women. This is also not a local problem. I found a similar situation all the way over in England. Why in the hell will these people not listen to women?
This brings me back to the main topic of my blog. I’ve found over the last few years an unwillingness to listen to autistic people, even as researchers have found that we are “critical experts” on autism. Here’s a link to that paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5368186/
I don’t yet have any answers, but here is my question: Why in the hell are the people making decisions about supports, research, and such not listening to those (women, autistic people, etc, etc, etc) who actually understand the issues and support needs?
This is a post from my friend Debbie, who recently interviewed me. She is also one of those encouraging me to get writing again.
More Than Talk
Besides working as a software application administrator at Boise State University my friend Carlyle is a regular speaker on autism. He has spoken to local law enforcement, parents of autistic children, campus ministries and mental health professionals. He is the first autistic person to serve of the board of the Autism Society Treasure Valley and he founded Boise Autistic Adults and Allies which brings together local adults with autism as well as parents and siblings of those who are autistic. And he is the one who taught me, among other things, that many adults with autism, or as he would say, autistic adults, prefer identity first language instead of person first language.
He’s pretty impressive isn’t he? I think so and I know his wife, Kristen, and daughter, Aeriel, would agree. Besides being autistic, Carlyle’s left arm became paralyzed 20 years ago after being hit by a car while riding…
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I’ve been encouraged to take up writing again and I’ve decided to do so. Although I presently have nothing ready to publish, I wanted to commit to this by posting a commitment to writing again and to give those still watching my blog permission to bug me if I don’t post something soon.
My psychologist described a vicious cycle that autistics go through: “autism leads to social dysfunction, which leads to social anxiety, which leads to depression, which leads to further social dysfunction.” Let’s walk through something that has been bothering me lately…
I have autism, which is largely defined by a set of social struggles. I am well aware of this. I started coming home to my mom in tears asking why no one wanted to be my friend when I was about 5. The problem is that answering that question is really only going to generate more social anxiety and hurt, because the answer is something I can’t really do much about. Most of the time, it comes down my non-verbal signals, but difficulty with non-verbal signals is part of the diagnostic criteria for autism.
Through the years, I’ve had no shortage of people telling me why people don’t want to interact with me. Some just wanted me to go away. Others were probably trying to be helpful, but unless you can tell me how to change it, it still only raises my anxiety and feeds the depression cycle. I understand it, but I feel helpless to change it, which leaves me feeling hopeless. I believe this cycle can be reversed. It looks like this: success leads to confidence, which leads to further success. This actually reduces anxiety, which reduces the negative body language, since most of the negative social traits of autism result from, and therefore, scale with anxiety and stress.
If you want to be helpful and supportive to me, the best ways you can possibly do that are these…
1. Love me and accept me as I am.
2. Communicate #1 to me regularly and in a way that I understand.
3. Teach others to do these things.
Autism acceptance is the battle I’ve chosen to devote my life to, and I can assure you that I will fight as long as I live to make sure other kids don’t have to suffer as long and as much as I have, but a warrior cut off from the supplies he needs is as good as dead.
I can understand. Being a parent isn’t easy, especially being a parent to a special needs child. You put in a lot of effort and you feel you deserve a little credit. So what’s wrong with posting something innocent like this?
I had a very interesting conversation not long ago with a fellow autistic adult. I observed (with some envy, I might add) that she seems very fluid in social interactions and doesn’t appear to have the difficulties I do. She told me that she puts forth a great effort to maintain that appearance and that it is truly exhausting, but then she told me the worst of it. She told me she feels no one loves her for who she is because no one actually knows the real person she is hiding inside. Then she observed that I seem to have close relationships in which people truly do know me and love me as I am. It’s funny how situations like this make you realize that you don’t really want what you thought you did and sometimes, you get reminded of the treasures you already have, which brings me back to the picture…
This message indicates that hiding the traits of autism is something to be proud of, which means that displaying autistic traits is not. This perpetuates the idea that one needs to be “normal” to fit in and be acceptable. This message also indicates that the parent should get a pat on the back because the child is doing something that requires a constant tremendous effort.
Honestly, I’d be happy to pat you on the back, cheer for you, hug you, or all three if you make efforts to communicate to your child that he or she is lovable as is with no strings attached. I think the important part, though, is to communicate this to the world. Please be mindful of what you share with the world and how you talk about your child. Trust me, your kids are listening.
I’ll admit, I’m not very good at this. Carlyle is the one who can write so well, but if we ever decide to write that book together, I should start writing some of this down. Raise your hand if communication between husband and wife is difficult. The whole pink versus blue thing is very real and relationships take work and effort. Now, add in Autism, which can be defined as a communication disorder. This can obviously wreak havoc and be extremely difficult for both parties. Communication is hard enough and you add in difficulty on top of that? Since everything in life requires communication of some kind, I think it’s a pretty raw deal.
Okay, so it’s hard, there are barriers, mine fields, struggles and pain. What can we learn from it? What can we DO about it? Part of the problem in communicating is that many of us, including myself, look at the incidents. X was said or X happened. We apologize, say it will never happen again or accept the apology if it happened to us. For those on the spectrum, including Carlyle, they look at every single detail of the situation. They experience and therefore have to process every minute detail. If they don’t get the time to process it in its entirety, those around them will continue (unknowingly) adding to the pain. This results in something we NT’s may see as “dwelling” on an issue. Since the issue wasn’t processed the Aspie will then return to the beginning and the cycle begins again and possibly again.. You get my point. It will continue to be brought up, until they have been able to discuss it while checking for clarification and then putting it to rest. It’s not a matter of “moving on” it’s all about healing from the scene and resetting. Carlyle can come up with great analogies, I’m going to suggest this is similar to a re-boot of a computer. The computer (brain) has to shut down or calm down and then once coming back up from a reboot, it must check through all the systems as it comes back up.
You know how an Autistic child may rock back and forth or even scream out in pain from something we (NT’s) may not even see or hear? They feel things 100x more than we do because of how their brain is wired. This same scenario is what is playing out when Carlyle is hurt, but hasn’t been able to process his feelings to completion. I have had to learn this. I’m a “fix it” personality. I like to jump in and attempt to fix the problem and move on and I’m going to assume that many NT’s are similar. What I had to learn was that I can’t fix the pain. No matter how hard I tried and we spent many years in this vicious circle. I felt like I was going to pay for something I said for the rest of my life. It seemed like we talked it to death and nothing I said helped. Here is the kicker though, once I stopped taking it personally, stopped being defensive and stopped trying to tell him why he shouldn’t be hurt and then simply listened and let him process in entirety, it was never brought up again.
Something else I’m learning from Carlyle is how to “meet” people. Carlyle has this ability to meet others in their pain. Relate in such a way that they feel heard, accepted and understood. He gets it because of the pain he has suffered, but also because he has searched for such friendship for so long. Although we all wish there wasn’t all the pain and suffering in this world, we know that’s not reality. I bet we would all agree that one of the greatest feelings when we are suffering is when we know for certain someone else gets it and can relate. The feeling that we are not alone in this battle. So, all that to say the biggest lesson I have learned is to slow down, wait, listen to understand, check for understanding and slooooow down some more. Did I mention slow down?