Today’s blog is from frequent guest blogger, Ivanova Smith. Ivanova is a self-advocate with a passion for social justice and she is a busy activist with strong opinions about the disability community. She recently began teaching at Highline College after completing her internship at The Arc of King County.
Understanding other people’s emotions has always been a struggle for me. I don’t know how to respond to people who are distressed. This is very stressful to me.
The media and research has suggested that autistics can’t have empathy; I don’t think that is quite right. I feel we have trouble understanding what to do with empathy. If I see someone in pain it makes me shut down I can’t respond to it. Does that mean I have no empathy? I don’t think that is the case. I think we have empathy but we struggle processing what is happening and how we should respond. While I am shut down, I feel great sadness for the person. I think about how I wish I could be the one in pain instead. But the feeling is so intense I can’t process my reaction fast enough to do something.
When someone is angry with me it scares me and makes me want to run away. But I can’t always tell when someone is angry with me. This leaves me in constant fear that I do stuff wrong and I do not know it. If my husband does not talk to me for a couple of minutes, I get scared and ask him if I upset him. He always expresses confusion to this saying “No. Why would I be mad at you?” or he unintentionally raises his voice. It just hard to tell.
Another contributing factor is that I am face blind. I can’t reorganize people well so I have to remember them by their clothing.
I feel autistic people have been expected to regulate emotions when some of us can’t. There are a lot of times I can’t understand my emotions because I get upset at things that are typically not upsetting. Lots of times I simply don’t know how I feel. I can tell basic emotions but anything with complexity and I am lost. I have had meltdowns all my life.
People have tried so many methods to help me control them. The biggest suggestion people give to me is to try various breathing exercises. I’ve tried, but I still feel upset and the meltdown does not stop. I feel the medical community needs to listen to autistic adults on how they have found ways to cope. The best methods I have found include rocking and having my comfort buddy Chewy.
The behaviors autistic people do like rocking and other repetitive behaviors can be the only way we can regulate our emotions. There is an article that goes in detail about this. When I read it I was so excited because it actually gives reasons for stimming from a positive view. I hope the article will help others.
This new research makes me very happy because maybe it help figure out different ways to help autistics with these emotional struggles. Also it helps in the sense of educating people on the harm of stopping stimming behavior.
With all of the new research coming out about autism, one thing concerns me. I don’t think that autistics who can’t express empathy should be shamed. Lots of adult autistic advocates are saying that the lack of empathy in autism is a myth. For some this is true, but all autistic people can’t be expected to express empathy. Every autistic person is different. Some can express empathy, and some may have empathy but can’t express it. I struggle with social skills but I know some autistics can master the social rules with training or self-study. I hope nobody is left behind or is shamed for not being able to do something.
I am also concerned about these separations within the autistic community. I have someone with autism shame another autistic online for struggling with social skills. This bothers me because it can make the autistic community hostile to autistics that don’t have social skills. Forcing expectations on fellow autistics makes me feel very uncomfortable. Autistics struggling with empathy and understanding need to be respected and given support! We need understanding, not shame. I am happy for the autistics who gained social skills and understand emotions. I just hope they don’t look down on autistics who don’t share those abilities. We need to acknowledge that every autistic is different. Some autistics can go to elite universities and are able show great amount of social skills. The majority of autistics struggle to understand the basic social skills and were never given the chance to get into higher education.
For a long time in the autistic community, some parents of autistic children have said that self-advocates were too ‘high-functioning’ to understand struggle of their autistic child. I did not understand why they felt this way. I thought that someone who is autistic would have more insight on being autistic then a non-autistic. But now I think I understand what they meant. Because some autistics expect others autistics to have the same abilities, parents realized this wasn’t possible with all children. Every person is a different, so I don’t think it’s right to expect an autistic to be able to do something just because you able to do it.
I still do not support functioning labels but I do feel that the autistic community needs to make sure all autistics are respected and accepted, not just those who have advanced social skills or can understand emotions. I believe very strongly that autistic people should not live in fear of being shamed by fellow autistics. We get enough of that from other people. It breaks my heart to see shame on people with autism. This is what has made me feel cautious of autistic advocacy. I feel there is a lack of understanding about the different levels of support needed. The autistic advocacy community needs to deal with this problem before there is a split in the community. Everyone has to be part of the movement.
Additionally, I believe we need to stay connected to the intellectual/developmental disability community. I have seen recent blog posts blaming the hard aspects of autism on other conditions such as intellectual disability. Parent advocates don’t relate to autistic self-advocates because we are seen as higher functioning then their child who may be non-verbal and have struggles with toileting. The self-advocates were quick to blame it on intellectual disability. I do not agree with their response. I don’t like how the intellectually disabled have be thrown under the bus over and over again. When I was young and still trying to figure out where I belonged, I related most with my peers with intellectual disabilities. When I found out I was autistic, I felt it meant I was part of that community. It made me so happy to start my advocacy and hang out with more people with I/DD. I know I am with my community.
Some people may argue because my IQ is in the learning disability range that I can’t relate with this community. But I look at history and just 50 years earlier I would have. When I saw that fellow autistics were distancing themselves from this community, it made me uncomfortable. I don’t want to split. I have been able to accept my autistic nature and the way I learn because of the intellectual/developmental disability community. I love all of my peers, and I feel intellectually disabled people need to be accepted and empowered just like what the autistic community wants. The entire community has important things to contribute to disability justice. Our communities need to stay together because we are more the same than different. We all want inclusion, not just some of us.