To a person without a disability it must be hard to imagine life with one. I think it is hard to imagine having a disability even for a few hours, so it is much more difficult to imagine living with severe limitations life long. I have not lived one day without autism. It is hard to imagine my life without it because I’m part of autism and it is in me. My mind is intact. My soul is free, but my body is the property of something else. This “else thing” is called autism. It looks like this: weird body movements, noises, lack of responding at times, a mask of flat expression on my face, impulse problems, and an overly sensitive sensory system, which is why I sometimes wear headphones.
But perhaps more difficult than all of the above, is the attitude of others. It is obvious by my actions that I’m not smart, right? OK, not right. But you know my limitations make me appear not smart at times, and then people assume. It’s not so bad now because I type on an iPad , so it is obvious that I think and read, but I still need to prove myself to each person I meet. This is life with a disability like mine. People don’t know or understand, and there are a lot of misconceptions.
It is more lonely to be autistic than not, especially for people who can’t communicate. I have an exercise for you. Imagine that though you think just fine your mouth is unable to speak your thoughts. This means no phone conversations, no singing, no long talks (or short ones), no calling your dog, no telling people your ideas, how you feel, or your needs. In other words, very quiet and very stuck. You listen all the time to the conversations of others, but you can’t join in. Ever. Not for an hour, but forever. Now imagine that your hand is wobbly and doesn’t obey your thoughts either, so the option of writing is gone. That is isolation.
Now it gets tougher. Your body doesn’t stop doing odd movements. You behave oddly because of that. Now you have a taste of autism. But I think one more taste will help you get it. Imagine all this, and put yourself as a kid into school with others like yourself and see yourself in a class doing the same boring lessons day after day, year after year, such as the days of the week, the weather, the ABCs, the 1+1s, all because your outside has fooled people into concluding you are dumb. Then the school tells your parents you don’t understand.
So now you know about my early life. I was lucky to escape my internal isolation because I was taught how to communicate, first on a letter board and now on an iPad. This enabled me to leave my special education environment and enter a general education one. My old classmates still remain in the same special education class. None have been taught to communicate yet.
In autism we are thought to be limited rather than trapped. I think the number of so-called mentally retarded autistic people is greatly exaggerated. How smart would you look if you couldn’t talk, gesture, write, or control your movements? It is a true frustration living like this with society’s misunderstanding, so I am grateful to begin changing perceptions.
Maybe we can work together to change the future.
Thank you for writing this. I’ve been following your blog for a few months. My 3.5 yr old son has mild/mod ASD and I find your insights truly helpful to how my son may be thinking. He can communicate verbally pretty well, but I still appreciate reading about how others with ASD think and process the world around them. I forwarded a link to this post to his early intervention teacher and will discuss it in our next parent/toddler ASD class.
Wow I am excited about this post! You have given words to what I try to explain to everyone about my son all the time. I copied this and forwarded it to everyone I know. Thanks so much for this! I have just recently learned about you and will enjoy reading your experiences and insights.
Ido, you inspire me. It’s because of your example I am working to get those kids who remain “trapped” in special ed classes out and given a chance in general ed and taught to communicate. Yes, it is an uphill battle with countless misunderstandings (to put it nicely) but together we can make a difference. I’m looking forward to hearing how your summer workouts go!@
Thanks for sharing your work. I have a 6yr old nonverbal grandson that is a genius, 🙂 Can you tell me the name of the app that you showing typing on in the blog about communicative devices or assistive technology. Keep up the great work. I will buy your book and follow you.
It is called Assistive express.
I am 58 years old and I have just found out I am autistic and a savant . Believe it or not I find great peace in this knowledge about myself. I no longer think there is something wrong with me because I am uncaring or unable to connect with people emotionally. I’m just Autistic. ??♀️I am so Blessed. Thank you for the beautiful story you shared about yourself. I had a job in which I worked with 2 nonverbal autistic men but was able to connect with them and they were a blessing in my life. Even though when I told other staff and even my supervisor I could communicate with they 2 autistic clients they thought I was plum crazy. ? But I looked forward to working with them everyday. And I knew I wasn’t crazy I just had a silent understanding with them. God Bles.
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I read almost all your blogs. my 3.5 son is autistic and is verbal and understands almost everything. He is receiving ABA for the past 1-year ad I am going to stop it after your explanation. Am I doing it right? is he need any type of therapy? or he will learn everything his ow. his understanding level is very fine.
I suggest you get acquainted with other parents in your area and try to look into alternatives.