Clients Speak Out About Living with Autism
Autism Awerness and Acceptance
At CW, we often teach the skill of “perspective taking,” or putting oneself into another person’s shoes/mindset. To build awareness and acceptance for autism, I decided to turn the tables. I asked some of our clients to describe for those who don’t have autism what it’s like and provide suggestions about how we can build acceptance. Here are the perspectives of a few of our clients.
How does autism affect the way you experience the world?
Personally, it’s hard to say because I don’t have experience with how it is not to have autism. Sometimes it can feel more limiting, you can’t exactly tell other people’s intentions or what they are trying to convey in nonverbal messages. Sometimes [I feel] limited on what I can perceive.
For me, I question what people are really thinking. At the same time, sometimes you can feel more [willing] to say things, which can be a good thing but not always. You feel less restraint. You state what you are really thinking, which has its ups and downs. Sometimes you get focused on a single subject. This has advantages (if you focus enough, you are apt to solve it) and disadvantages (if you spend too much time, you can miss other things that are more important).
Everyone has different life experiences, but because of my particular [situation], I have some good times and bad times. So, I’m lucky because I got therapy and support from Communication Works where I could learn how to be more considerate of other people and learn how to “fit in.”
It makes me more aware and grateful for the relationships that I do have because I’ve been a loner. My family is supportive and that makes me happy.
I wonder if things are my fault because of my autism. I feel like people don’t understand that things are harder [for me]. Some things are difficult, like schoolwork; I try to do my best but it’s hard. I should perform to standards of others. I get overwhelmed. Some things are easier for me: specific interests that I can focus on. I’m good at is remembering facts (e.g., comic books).
From a parent:It definitely puts a microscope on the world and helps identify with both sides. The good and bad sides are both magnified. As parents it helps us to be more empathetic when dealing with anyone that is faced with a disability whether it be mental or physical.
What do you want others to know?
That everyone is different. What I would like the world to know is that I and others like me can come off as rude or insensitive, and I have noticed that certain people have made claims that [people with] ASD and AS lack empathy. I want to say that we have a great deal of empathy and we can connect to other people, it’s just difficult. I see misconceptions that [those with] ASD don’t care or are insensitive. I just want to say that we do have empathy and often have more for certain things, but just don’t pick up on cues so don’t know when to show empathy. Not that we don’t care, we just have difficulty showing it. We can be reluctant about opening up.
Maybe it’s just me, but I don’t like to be treated like I’m different. I find it irritating when people treat me like a child. Kids with autism are very lonely a lot of the time. Fear that they will say the wrong thing. Want to be treated equally, [and as if we are] just as smart or kind [as other people]. I do want to connect with other people. If I could wish away having autism, I would in seconds, but I have to take advantage of my weaknesses. I have made friends with [others who have] autism. None of us is perfect. People should know that it is hard to admit that I have autism. I know how it feels to feel lonely and not give up hope on yourself.
I want people to know that people with autism are doing the best they can with the tools they have and that I work hard to do what neurotypical people find easy to do. So sometimes if I am too tired to do [something] and even if it seems easy to you, don’t judge me because it’s not easy for me.
From a parent:That the spectrum of autism is very broad and the way it affects others can range from very mild where symptoms are not even visible without any interaction to very severe where extreme measures must be taken so that no emotional triggers are set off. In either case people should be mindful, understanding, and sensitive to that person's situation and condition.
As you can see from the responses above, it’s illuminating to hear directly from people with autism (and their parents) about how the experience affects them. During the month of April, which is Autism Acceptance & Awareness Month, I’m planning to share these responses with teachers and other professionals to increase awareness and sensitivity about autism.