By Vicki Ungvarsky
April is World Autism Awareness Month. I cannot speak about the experience of being autistic. I do not have an autism spectrum disorder (ASD) diagnosis. However, I can discuss what it is like to be the mother of a child on the spectrum. What does this month mean for many families, including mine? For me, it means having the honor of writing this blog. For many other families impacted by ASD, the meaning is similar – the chance to educate and advocate for those they love who have it – in any forum they choose. It is even more important for autistics to educate and advocate for themselves. Most of us feel more “seen” than we do during the rest of the year. Support is shown in a variety of ways on April 2nd, World Autism Awareness Day. People don blue or red apparel depending on what campaign for autistics they are supporting. There are rainbow-colored infinity symbols and puzzle pieces in many public places. We hope, and in my experience, find that they are interested in ASD.
I used to share statistics about ASD – how many children and adults have it worldwide, who is most likely to receive the diagnosis, etc. Then, I came to realize many people are aware of the numbers, and if not, we live in the age of Google. My friends and family are more interested in experiences with my son – more personal information because we are some of the lucky ones. Our friends and family care so much about him. They want to know about his progress, and any ways they can help him, and by extension, my husband and I, in areas where little to no progress is seen yet. They want to know our son.
My son can communicate. It can be a challenge. In a world where everyone is talking, but rarely is anyone truly listening, he is my heart, and many times, I am his voice. He is a 13-year-old non-speaking autistic. He uses an Augmentative Alternative Communication device (AAC) to express himself – an iPad with a program that has many icons with words, phrases, and pictures that, combined, allow him to make phrases and sentences. For example, if asked, “How do you describe yourself?” He responds, “Handsome, silly, hungry!” and then he laughs. He is not lying, better still, that is truthfully how he feels about himself. Where challenges arise is if there is not an icon for what he wants to be said. I am so happy to share that he is finally having some success with typing! The other challenge is society’s misunderstanding and stereotyping of nonspeaking ASD. It is our experience that strangers who realize he is non-speaking talk exceptionally slowly to him, if at all, and they do not think he is capable of much. I will let you in on a secret: although he is severely autistic, he comprehends everything said to him. He can recognize whether people think he is capable of that or not and depending on how he is treated, determines how much they think he is capable of in general.
My son is the biggest stinker I know – more than capable of doing many things independently, like washing, dressing, feeding himself, and brushing his teeth and hair. He can use the microwave and cook some simple meals on the stove, like mac ‘n cheese. He needs supervision or else leftover pizza gets heated for twenty-three minutes in the microwave! The point is, he does these things with no help. My son enjoys doing chores around the house too! He cleans up after himself, takes out the garbage, washes and dries dishes, does his laundry – the list goes on. What will he do if he knows someone underestimates him? I hope they are ready to work because he will let them do everything for him, not lifting a finger – while smirking. Also underestimated is his brand of smarts.
Where are his struggles? He is not typically an “academic.” He has attended a variety of learning facilities but shows a pattern. There is a collection of traits and behaviors he looks for in anyone who works with him. If he does not see these, he will not form the “connection” with the person to which he will expose knowledge. He has attended his current center the longest – they work with him extensively one-on-one, analyzing his behaviors. They can tell when he is holding back knowledge. Plus, he has behaviors that interfere with other students’ learning. He does not appreciate it when I disclose them. Therefore, they remain undisclosed.
I have had the pleasure of knowing verbal autistic individuals as well. Many, if not all, have challenges when it comes to social communication and interaction. Due to this, when they make an effort to advocate for themselves – let you know how they feel, what they want or need, acknowledge it. If asked for help, inquire how to do so and follow through with it. Always presume competence and capability.
For many families, including mine, April means the same as every day, week, month, and year. We advocate. We educate. Most of all, we love.
