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When Autism Doesn’t Speak

Wrong numberBy Cathy Jameson

On a rather busy morning last week, the phone rang.  As I reached for it, I cleared my throat and said, “Hello?”

“Good morning.  May I please speak to Ronan Jameson?”

I hesitated and was able only able to utter, “Uh…”

I immediately felt uneasy and somewhat annoyed.  Most everyone who calls the house knows that Ronan cannot speak.  Who was this person was and why did she need to talk to my non-verbal son? 

I politely asked, “Who’s calling, please?” 

“This is Cindy.  I’m calling from the diaper service company.”

“Oh.” I said.  Deciding whether to put Ronan on the phone or not, I glanced to where he was.  Sitting on the couch with iPad in hand, his favorite movie playing on the DVD player, and breakfast just served on the table behind him—a gluten-free feast fit for a king—I decided not to put Ronan on the phone.  Had it been a telemarketer, I may have said, “Sure.  And good luck!” before passing the phone to the boy who lost his speech several years ago.   

Turning away from Ronan, I told Cindy, “Well, Ronan can’t talk.  I’m his Mom…what is it you need?”

Cindy stammered.  My response must have caught her off guard.  She said, “Well, let me leave a note in the file that we should talk to you instead.” 

I could hear her typing as she tried to regain her thoughts.  She was calling about the next shipment date but had gotten so flustered.  I took the call and her oversight it in stride but wondered if Cindy could tell that I was faking a smile while waiting for her to proceed with the call. 

Other representatives have always asked for me directly, but I did not protest her adding that Ronan can’t talk to his file.  Lack of typical speech is something worth noting.  It may have been news to Cindy, but it’s something we have been addressing for quite some time.  Sign language, flash cards, labeling everything in the house, narrating every action, emotion, and item Ronan sees, smells or touches, we flooded Ronan with words as soon as he went silent.  Despite our efforts, though, Ronan hasn’t regained speech. 

We still label things Ronan sees.  We still narrate what we’re doing and what he’s doing, too.  We still start conversations with Ronan in the hopes that he’ll offer a verbal reply in return, but his expressive speech skills remain practically non-existent.  

Ronan has figured out other ways to communicate.  We are grateful that he’s done this and celebrate every connection he makes.  Making connections with abstract concepts get a great amount of praise like the time when I asked Ronan how old he was.  Some may think it a silly question, but for Ronan who has never shown us that he understands the concept of time to include how many years have passed by, we whooped and hollered quite excitedly when Ronan wrote down correctly, and confidently, how old he was. 

 

We had an even bigger celebration the time Ronan effortlessly showed us what his last name was.  Never had we thought he knew it.  But never had we thought to ask Ronan to tell us what his last name is.  Of course, he’s heard his last name but to communicate that he knew it?  Never. 

 

He wrote Jameson as if he’d been writing his last name for years. 

If you’re wondering why the cursive letter strip is in the picture it’s because I was curious to see if Ronan could read cursive.  Yep, he can. And guess what?   After I modeled how to write his name in cursive, Ronan wrote his name in cursive, too.

 

Ronan can’t talk.  He can’t verbally express his wants, needs, or desires.  But he can communicate.  He has been able to figure out how to tell us things that we never expected to discover.  He has been able to show us things we never dreamed he could understand.  He has been able to share things he can do that we never thought were possible.  We’ve learned so much from a child, who now uses only 3 functional spoken words, through signing, typing, and writing.  And through laughing. 

Ronan loves words.  To see them, to read them, and to have someone say them aloud for him, which is what he wanted me to do a few days ago, Ronan is so happy when someone acknowledges the words he sees.   Just a few days ago, as I’ve done hundreds of times before, Ronan pointed to words he wanted me to say.  When it was my turn to ask Ronan to point words, I used ones on his Spelling list that he was studying.  But Ronan couldn’t stop laughing.  Every time I repeated one of the words, he giggled.  Every time Ronan pointed to the word so that my husband could read it, he giggled even harder. 

 

Heaven was one of the bonus words on his spelling list.  And what a bonus it was to hear him giggle each time I or my husband said it out loud.  Pure.  Innocent.  Peaceful.  What a slice of Heaven it was to see Ronan so happy and to hear those silly giggles. 

I giggled to myself earlier in the week.  That was after that woman, Cindy from the diaper service, and I hung up the phone.  Not that they ever did before, but in case it isn’t Cindy calling back the next time, the reps there now know to go over order information with Mom, not with the non-verbal 12-year old child. 

Not being able to talk is one of Ronan’s greatest struggles, but somehow, he manages to work through them.  We do as well always with the hope that he will show us more, tell us more, and teach us more.  He may be severely affected.  He may be completely dependent.  He may be years behind his siblings and peers, and still be in diapers, and still not yet be able to speak.  But Ronan is pure.  He is innocent.  And he is full of peace.  Someday, I pray that I, too, will feel that same sense of peace.

Cathy Jameson is a Contributing Editor for Age of Autism.  

Comments

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Lindy

My son is 24, fell into 'autism' at 18 months and lost his speech at age 3 after a tetanus shot. I have had many callers asking to speak to him and most recently tried to get legal things straightened out, of course, him being an adult, I was repeatedly told that they needed to speak with him, not me. Talk about frustration!

Peter Miles

Yes Cat, our boys are beautiful and unique and very intelligent. Not only do they want to communicate to us, but they find the most extraordinary ways to do so. We often are listening to what music Stephen plays; Bridge Over Troubled Water means he has a headache, Enya means ennui (not really bored, not unhappy just chillin'). We also have a friend who used to communicate to his parents through Gilbert and Sullivan.

We've had some issues; we had to get rid of the Let It Be CD, every time Across The Universe came on he went into a very dark mood and would lash out at the least issue.

He also started to play songs over and over and at one point would start repeating a smaller and smaller section of a song until it became just a one or two second clip. We found this could go one of two ways. Sometimes he had trouble initiating actions - he just couldn't initiate the action to change the CD or movie and was asking us to intervene. But at other times he was just fascinated at a particular sound and wanted to hear it over and over to discover all he could about it, he was genuinely exploring it. We had to see what mood went along with the action to decipher the message.

Funny story, we wanted to explore this and found someone at a university who was looking at music therapy and brought Stephen along as a subject. The therapist was totally out of it. She would sit Stephen beside her at the piano and then get very upset when he wanted to bang on the keys - he was just supposed to sit and listen. Then she played everything including her voice in B flat which drove him up the wall. No amount of discussion with the therapist would change her approach. Eventually the study director cut him from the program - I guess Stephen did not fit with his hypothesis, he can't prove his point if the subjects don't behave accordingly.

Despite the incident with a less than adequate therapist I'm sure there's a valuable area of study here. Here's probably a large population of very intelligent individuals who are unable to communicate verbally and find their own ways of making themselves heard. This goes beyond gesturing, signing and picsymbols because it's also very much related to emotions, hard things to put into words if your vocabulary is very limited.

Thanks for all your work at AofA - always a source of inspiration.

Peter

Cat Jameson

Peter,

Thanks for the song--I love that band! Thanks also for sharing a little bit about Stephen. I have to sometimes remind myself that Ronan is maturing in some areas even thought he's so very delayed in others.

Ronan reminds me that he's aware of what's going on around him and it will catch me off guard like when I discovered a Nine Inch Nails song he'd been listening to (http://www.ageofautism.com/2012/10/every-day-exactly-the-same.html). More recently, Ronan has resorted to replaying a line in a movie. It takes me a few minutes to know that he's not just perseverating but that he's communicating something relevant for the situation he's in at the moment. When I finally clue in to what he's trying to tell me, it totally blows me away.

Praying that we can continue to help our boys and that they continue to show us how unique and beautiful they are.

xo, Cat

Matilda R

We have also received calls from HMO staff wanting to talk to our non-verbal son. Just shows you how out of touch all these people are in what families go through on a daily basis. To them, our children are merely a name in a file, not people with individual needs that anyone with a brain has bothered to check to see if they have other people who are speaking for them.

beverly gardner

How beautiful! The universal language...laughter!

Gary Ogden

A beautifully melodic giggle inside a beautiful little man. A joy to hear. Thank you for sharing it with us.

Sun~Rose

I loved reading these posts and the song about Kona (where we visited friends eons ago); and why oh why has no-one here asked about the Institutes for the Achievement of Human Potential and patterning and what a miracle is has been for so many children?!

Thanks to what they taught us to do and our wonderful volunteers, autism has a whole different story in our experience.

With Love for all of us.

I don't work for the Institutes and I'm just a grateful mom who's been through the horror of regression and so much more.!

Theresa

Cathy, We have gotten these calls as well. They can be very painful. We were unable to communicate for years with my son until RPM,Rapid Prompting Method. My son was incapable of what Ronan is doing in your video when he was the same age. Since RPM though my son has voted in elections. Now we get notices for him to go for jury duty. You cam imagine how we have to deal with that. The calls I find most upsetting are the ones from the medical insurance company. They want to talk to him about his symptoms and treatment. I think one time we had his brother speak for him. He can't speak but he can spell. We have to say we can speak on his behalf. We don't want to reveal we are his guardians and we always fear he will lose his medical treatment because of his Autism diagnosis. I have to say though I would love for my son to serve on a jury.

Wouldn't that be interesting?

Laura Hayes

Thank you for yet another wonderful and inspiring post, Cathy. I love hearing Ronan's beautiful giggle. Such a precious child of God with an amazing, patient, tireless, and loving mother.

Peter Miles

Thanks for a wonderfully uplifting little story. Our Stephen sometimes gets phone calls as well and we have to sort out how to respond. The most interesting are the ones from the bank (Stephen is a little older and has to have his own bank account for his disability pension deposits), they really insist that they need to talk to him directly, but it's usually a promotion for a credit card or different type of account. Some of them are curt and business like and ring off quickly but others are very sympathetic and we sometimes have a short conversation about autism - there really are some nice people out there!

Like Ronan, Stephen is a man of few words but clearly understands a lot more than he can express. We have learned to treat him age appropriately, he's a young man now and we talk to him as you would a young man. Some things may not be developing, but socially and emotionally he wants to be a young man. One way we became very aware of this was through music. In his early teen years he became increasingly anxious when listening to music and it was really all children's music (Fred Penner, Sharon Lois and Bram, etc) so we decided to try some new stuff and let him listen to Beatles, Moody Blues, Tears for Fears etc. and he really enjoyed it. He was growing up. Maybe we're a little slow, but it was a revelation for us.

How much does he understand? Maybe we will never know the full extent but we need to make sure that we don't fall into the trap of assuming he doesn't understand. He needs, and we need to keep communication and participation active and relevant. He may not be able to express a large vocabulary but we can work with the words he can express. He takes his turn at the dinner table to say the grace, it's short and sweet but it gets the job done, and it's just another way that he can demonstrate he's an active participant in the family.

https://www.youtube.com/watch?v=EYb5Uhh03kI

Patience (Eileen Nicole) Simon

Thanks for this focus on language, and the seriousness of this aspect of autism. In the Boston Globe this morning I saw an article about a new book, "Thirty Million Words", by Dana Suskind who followed language development in children with cochlear implants. I have requested this when it is returned to the library.

I saw NeuroTribes on the new books shelf the other day, and immediately checked it out. A meaningful discussion of language is lacking in this book, which is why "neurodiversity" has nothing to do with the kind of autism most of us are dealing with.

I will continue to try to point out the vulnerability of the brain's auditory system, and especially to many causes associated with autism: prenatal rubella, prenatal exposure to valproic acid (depakote), asphyxia at birth, and neonatal jaundice. Perinatal impairment of the brainstem auditory pathway will disrupt maturation of the language circuits within the cerebral cortex.

Vaccines were an obvious target of scrutiny. The "science" is very incomplete. I responded a few days ago on the report by Gadad et al. (PNAS 2015, Sep28). In future experiments the brainstem auditory pathway should be looked at. This can be done now with functional MRI (fMRI). The experimental monkeys do not need to be killed for neuropathological examination of the brain.

Brain injury should be the focus of investigation in cases of nonverbal autism, as it is in cases of aphasia. Meanwhile, keep up your amazing, thoughtful efforts to promote Ronan's use of language.

mary w maxwell

Dear Cathy and Family, I’m so glad Ronan is tickled by the word Heaven.
I’m sending him this one: HUM-U-HUM-U-NUKU-NU-KU-A-PU-AA.
Easy, huh? It is in the Grass shack song which you will love:
https://www.youtube.com/watch?v=pLNFRqkSlm4

I can hear old guitars a-playing, on the beach at HO'ONAUNAU. I can hear the Hawaiians saying "KOMO MAI NO KAUA IKA HALE WELAKAHAO." It won’t be long ’til my ship will be sailing back to Kona, a grand old place that I always long to see. I’m just a little Hawaiian and a homesick island boy, I want to go back to my fish and poi. I want to go back to my little grass shack in KEALAKEKUA, HAWAII , Where the HUMUHUMUNUKUNUKUAPUAA goes swimming by!!!


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