On the ‘Blending with Autism’ Facebook page and blog, Janet Amorello writes about daily life with Sam, her 18-year old autistic son. Sam has challenges with communication, yet finds unique and surprising ways to create meaningful language. He also has a love of drawing that speaks to his vibrant perspective on the world.
I spoke with Janet about words, art and the different ways Sam has shaped her views on the autism spectrum. (All images below are from the ‘Blending with Autism’ Facebook page.)
Could you describe Sam’s history with spoken language, and where he’s at with it today?
Spoken language – that’s a challenging question. Sam sang before he spoke. That’s Time Magazine’s fault in part. When Sam was three weeks old, there was an article about how the more you spoke to your baby the more brain cells connect, or something like that. I remember trying like hell to talk to Sam all the time. The interesting thing is you dry up very quickly when no one is interrupting or talking back! I remember being in a bit of a panic thinking his poor little brain wasn’t going to connect. Then I started singing to him – I figured I knew a lot of songs and songs have words.
Fast forward to age two. Sam was singing, but not talking. That’s when I started to get the impression other people didn’t think Sam was quite as perfect as I thought. At that time he really didn’t have any functional language beyond Moma and Dada. I couldn’t teach him the word “down” to indicate he wanted to get out of the crib. (PS, regardless of what anyone thinks, I still think Sam is pretty perfect.)
It occurred to me he learned songs so easily, I started teaching him songs with functional language – Ring around the Rosy was the first – that’s how he learned “down.” I’d take him out of the crib and sing the last line, “All fall down” and emphasize the word “down.” It was a slow process but it worked.
Around that time we finally found our way to Children’s Hospital and they told me how delayed Sam was with language. They were very interested in how Sam responded to music though.
By the time he was 3 he knew the words and melodies to over 40 songs but couldn’t string two words together. So we kept singing. I remember when he was 5 one of our sitters mentioned on the rare occasions Sam spoke, he “sang.”
He loved books and memorized a lot of Dr. Seuss. He started using a lot of what he’d memorized functionally – I remember saying all Sam needed to do was memorize more books and he’d be able to rip off pretty much all the language he needed.
His communication style was pretty much echolalic for most of his life. In many ways it still is – he pulls lines from books, movies, YouTube – even me. In a way it is pretty amazing. It was like he had a Rolodex of phrases in his mind…
You wrote a few weeks ago that he is beginning to show an interest in pronouns for the first time.
Lately he has made some strides. They come in spurts. I think he is more interested in talking to me sometimes – some of it just seems to be clicking more. It isn’t as though he is suddenly fluent – he just has more tools in his language box.
What I do find is when Sam hears a word he finds useful, he only has to hear it once or twice and he has it nailed – so it has to be motivating to him. If he isn’t interested, he isn’t going to learn it.
The pronoun accomplishment as of late is a perfect example – it all centered around dessert – very motivating. I remember how quickly Sam learned to ask for cheese on his pasta – took a nano second because he loves Romano cheese!
I find periodically there are these little “break throughs” – there isn’t any rhyme or reason to when they occur. Lately there have been more. I guess that just proves there isn’t a statute of limitations on learning.
When did Sam first begin creating his drawings?
Sam never really started drawing – it is more like he never stopped. Most kids in elementary school shift to less and less art over time. Sam didn’t. I have a wonderful drawing on the side of my fridge from kindergarten of a cat that Sam drew. I love that drawing and thought way back then he had a great sense of color.
When we went to restaurants, I often brought crayons and paper – I didn’t want Sam to always be plugged into technology – it felt isolating. If he was drawing, there was an opportunity for interaction i.e., “Hey Sam, what are you drawing”. Often we would draw together (I was an art major in a different life). He seemed to enjoy it and again it was a place where we seem to connect. He sometimes watched what I was doing and did his version of it. Sometimes I drew something and he embellished it.
Sam’s favorite subject is windows, doors and roofs. Lots of variations on that – sometimes with rainbows or mountains. His fascination with windows began about 4 or so years ago. I don’t know why.
Recently he drew “drops of water,” a “playground.” One of my favorite older subjects was a “caterpillar.” He has a series of heart drawings but most of those have been done at my request.
He draws things I wouldn’t think to draw. One day he was drawing some very colorful rectangles. When I asked what he was drawing he said, “bricks” – and then I remembered we had walked on a brick walk earlier that day and he had been looking at the bricks. I found that so interesting because I could see the whole thought process, his observation and then his interpretation.
Once in a while I set up a still life and we draw together (someday I want to do a series of drawings with Sam like this because our perspectives are so different.) Sometimes I ask him to draw things for me.
Most of the time I let him do his own thing.
Along the way I’ve given him different papers and oil pastels. Sometimes I suggest he sit and draw if he is getting too hung up on something; sometimes he just goes to it on his own. The intensity of his drawings can vary based on his mood. Overall I think he finds drawing cathartic – I say that because of his facial expressions sometimes.
I only know he is in a happy place, creating.
If you could go back in time to the day the autism diagnosis was given, what would you say to yourself?
Off the top of my head, first and foremost, your child is going to be OK. He is still the same child you loved yesterday. Nothing has changed but a few words. Tune out the drama. Focus on what’s important. Trust your gut. Stay away from the negative people. Take a deep breath. Go forward.
You might want to include something [in the question] about a length of time – my answer would have been completely different 3/6/9 years into the diagnosis. Milestones change your perspective. When Sam was 5, I thought some how everything would magically fall into place… there is also a big difference if you’ve dealt with years of challenging aggressive behaviors. I wish I knew then that “little” behaviors eventually become “big” behaviors. I would have liked to know we’d be OK even with these behaviors, puberty, all of it.
Lastly, love him for who he is, not who you want him to be.
It seems like many of the parents I read who have a positive take on the autism spectrum had to get there by working through an initial bout of fear and/or anger. It’s almost like, for some, that initial reaction is a necessary stepping stone.
Remember, there are professionals telling you your child has (and I quote) “a devastating lifelong disorder” and that would throw any parent into a panic. Everyone has an opinion. The early days were isolating. I don’t know if I isolated myself out of fear or if we were “shunned” out of fear. Perhaps both. It is a lot to wrap your brain around.
We are also talking vastly different functioning abilities. Regardless of most parents views on autism, most just want their kids to be able to navigate the world one day. A lot of parents (myself included) are not certain that will ever happen. It may not be within the realm of possibility.
As you’ve worked through different reactions and understandings of autism, what has helped the most, in terms of shaping your thinking? Is it anything you’ve read or been told, or is it purely your experiences with Sam?
I guess it is all of the above, but mostly Sam. Regardless of what the professionals told me, part of me was completely enamored with my little guy. Though there were challenges, he was overall a happy fellow. How do you not love that? I did have a problem with the concept of changing anyone. I wanted Sam to be the best Sam he could be, but I wanted him to be Sam. I wanted him to think that there was at least one place in the universe where he was the best thing since sliced bread. I think everyone deserves one person who can look beyond the obvious and see the perfection.