If Autism Brought Blindness Instead of Apraxic Mutism Would Media CARE?
Managing Editor's Note: My daughter Bella is pre-verbal. She has a few sounds. A few words. Her inability to speak is dangerous to her well being. It frustrates her to pieces. It is behind many of her behaviors. As I am typing this, she is grabbing my arm and moaning, trying to tell me something. She has a GoTalk and an iPad - neither of which replace a VOICE. Humans evolved "higher" than animals so that we could communicate. I want the American media to say, "What the freak happened to this child's brain that wiped out her ability for form mouth movements that lead to sounds that lead to speech?" And the kids below.
By Anne Dachel
Say “non-verbal” twenty times.
I was reading several stories recently and I noticed a passing remark about an autistic child being “non-verbal.” NON-VERBAL means they don’t speak. Does that bother anyone? Evidently not, since the non-verbal phrase wasn’t a focus or a cause for concern. Non-verbal is just the way a particular child is.
So when did being NON-VERBAL become acceptable? I don’t remember ever hearing about children NOT BEING ABLE TO SPEAK when I was a kid. Even children who were developmentally disabled (or as they were called “mentally retarded”) could talk. I’m sure there were children who didn’t speak, but they were rare. I would have been very interested in seeing someone like this. Now they’re everywhere and no one is asking why.
This is frightening. We’re conditioned to children like this, thanks to stories like these. Every one of these stories brings up the issue in a very matter-of-fact way. I stopped when I found 20 stories from the last month. It didn’t take me long and I had lots to choose from.
June 5, 2013, CBS Los Angeles: Man, 19, With Special Form Of Autism Finds New Way To Express Himself
"Los Angeles teenager with non-verbal autism is making use of modern technology to find his voice."
June 7, 2013, Chicago Tribune: Database allows residents to share extra information during 911 calls
"If a family member or baby sitter calls 911, a dispatcher will see what James and his family look like and immediately learn that the teen is nonverbal and has strong allergies to peanuts and penicillin."
June 8, 2013, KATU Portland, OR: Young Autistic Boy Needs More Treatment
"Sammy is currently nonverbal and needs about 40 hours per week of intensive therapy to (hopefully) bring him up to par with his peers by Kindergarten, or as close as possible."
June 14, 2013, WLTX-TV Columbia SC: Kershaw County Missing Child Found Dead
"He says he was found in the pool of a home a quarter of a mile down the road from Pine Grove. He says the child was autistic and non-verbal."
"Coulton, her second son, is also non-verbal and is confined to a wheelchair and lives with autism."
June 17, 2013, Jacksonville (NC) Daily News: Bill to help with care for autistic children
"She ran through the house calling his name but the non-verbal Giles could not answer."
June 19, 2013, Fort Wayne (IN) News Sentinel: Children with autism dare to dream
"Brooks is normally nonverbal."
June 20, 2013, News12, The Bronx, NY: Carmen Luchesse claims 4-year-old autistic son assaulted at Birch Family Services in Riverdale
"According to Carmen Luchesse, a teacher’s assistant at Birch Family Services in Riverdale beat her non-verbal son, Jovanni Gomez."
June 24, 2013, Mount Olive Chronicle (Chester, NJ): Autistic Budd Lake man graduates, faces shaky future
"McEntee, 21, the son of Lynn and Larry McCentee, is non-verbal and has autism so it was no small feat when he graduated on Thursday, June 20, from Eden Autism Services in Princeton."
June 24, 2013, Kentucky New Era: Couple builds family tree through foster care, adoption
"Andy is nonverbal with autism and will need lifelong care – a commitment Richard and Mike agreed on."
June 25, 2013, Kentucky.com Lexington KT: Lawmakers lecture insurance companies about paying for autism treatments
"Meanwhile, his 4-year-old son has gone from being non-verbal when he started Highlands two years ago to mastering more than 300 vocabulary words."
June 27, 2013, Half Moon Bay (CA) Review: Special kids benefit from surf and turf
"Miles, who is severely autistic and nonverbal, returned to the second incarnation of Surf Day on June 19, along with 13 other new and returning autistic children.
June 28, 2013, Middletown (NY) Times Herald Record: First responders get tips for dealing with autism"
"In fact, Lee said, half of the children with autism today have limited speaking skills or are entirely nonverbal."
June 28, 2013, ABC6 -TV Austin MN: Parents of Scott Meyer Spread Awareness of Project Lifesave”
"And that was hard because he is non-verbal and can’t talk.”
June 29, 2013, ABC5-TV, St. Paul, MN: Parents of Scott Meyer Spread Awareness of Project Lifesaver
“And that was hard because he is non-verbal and can’t talk.”
June 30, 2013, Stow Sentry (Kent, OH): Stow Pride Breakfast 2013 honors citizens, businesspeople
He purchased an iPad for a non-verbal, autistic student so that he could communicate with his family for the first time.
July 1, 2013, KVUE Los Angeles: Autistic child’s breakthrough gains worldwide fame
“'Soma gives these non-verbal, autistic children a voice,' said Ericsdottir. 'She gives them an outlet for communication.'"
July 2, 2013, Minneapolis Star Tribune: ‘Genuine Genius’: Edina nonprofit website stresses things autistic kids do well
"While Erik is mostly nonverbal and struggles with social interactions, Nordberg said she has always chosen to focus on what Erik can do, not what he can’t. For Erik, that means emphasizing his horseback riding skills."
July 2, 2013, NewsOne: Teen With Autism Allegedly Terrorized With Broomstick By Classroom Aides
"Wesley Malone, who is nonverbal, had been displaying aggressive behavior that concerned his father, John Malone (pictured)."
July 4, 2013, CBS MN: Project Lifesaver: Helping Parents Keep Kids With Autism Safe « CBS Minnesota
"Five-year-old Scott Meyer is non-verbal with autism, so hundreds of volunteers turned out to try and find him."
Maybe the story from the Fort Wayne News Sentinel said it best, "Brooks is normally nonverbal." "Non-verbal" is a new normal for children. We need to get used to it.
Managing Editor's Second Note: Get used to it? NEVER. Thank you Anne.
Anne Dachel is Media Editor for Age of Autism.
My daughter is also non verbal, like many other children across the nation. Im wondering also if vaccines actually caused issues or problems in children could it be or is there a connection. between h1n1 vaccine given to pregnant women2009. Im wondering how many women out there rushed out to protect our unborn children from the swine flu viruses. Or did this harm our children with negative side effects. Just wondering if any other mothers have non speaking children and had this vaccine swine flu vaccine while pregnant in 2009......
Posted by: katie | August 26, 2013 at 09:36 PM
My son Lucas is a non-verbal autistic (seems to be able to say something like 'Mom' when stressed out). He is now eleven and regressing (His mother feeds him crap he should not eat). He is becoming more aggressive at school and with his habs. I get a headache just thinking about what the future will be for him. Pray for him.
Father of Lucas
Posted by: Mark | July 16, 2013 at 01:27 PM
My son was an early talker..what is an early talker...kids who score well above their age in speech and language usage. My son at 12 months pointed to things and ask, "what's that?" he sang the Barney son..he screamed, MMMIIINNEEE if his brother so much as looked at his toys. Then...he was vaccine damaged..and slowly regressed. Nobody panicked but me, why, because according to his MD., he should not have been speaking so well to start with. Today he is days from turning 21...he cannot make a single sound anymore...nothing..he had a bit of noise and sounds at age 10, but regressed a second time when seizures hit....and God help him..if he arm was crushed in a car door he could not cry out for help. HORROR what we have done to a generation of children...and I don't see it ending any time soon..
Posted by: Cheryl Bailey | July 10, 2013 at 09:50 PM
This article highlights a profound insight into the shaping of society's perceptions of autism. Truly, it appears that this autism epidemic is being deliberately perpetrated, society is being instructed to accept it and we are all supposed to just shrug and say "I guess this is the new normal."
I applaud the many, here and elsewhere, who reject this 'new normal' for it is anything but normal. This horrific assault on the human race is succeeding mostly because few people can comprehend such a travesty. Most of us, successfully isolated from others, think that we are alone in what we are experiencing, and the autism epidemic was in full swing before its true breadth became apparent. Now that its extent can no longer be denied, the 'experts' are determined to convince us that this somehow 'just happened' and we have to adjust the parameters of our expectations and deal with it.
Again, I applaud all those who 'deal with' the life-changing difficulties, but refuse to 'deal with' autism as 'just one of those things'. We must never stop seeking and proclaiming the truth, never stop trying to warn others, and never stop looking for better ways to repair the damages that were unwittingly done.
I realize that one must accept the mantle of 'conspiracy theorist' to talk truth, but the tin foil hats are a small price to pay. Compared to past technological and medical achievements, determining the cause, prevention and cure for autism would be a very simple thing - if 'science' chose to accomplish it. Indeed, there is little reason to believe we could not easily 'cure' cancer and most modern 'disease' if health and life were truly the goals of the medical establishment. We must sadly acknowledge that they do not appear to be the true goals.
Autism is NOT normal, is easily preventable by avoiding vaccinations, meds and other toxins in our food and environment, and I believe it is also often much reversible. God made this amazing human body to be able to self-repair, and given the proper care, nutrients and removal of toxins, some pretty miraculous healing can and will happen in most, but not all cases.
As for the precious lives in whose bodies the damage is too severe or too long past, we must seek to understand and meet their special challenges. And in their honor, we must fight to prevent others from being ignorantly led to make the same mistake of believing that government and industry could never be evil enough to deliberately allow or seek our harm. Perpetrating evil is a choice that anyone can make, and we are foolish if we do not understand that many will choose to further their own interests with no concern for others. This is much more demonstrable than the many so-called facts science purports to have proven, as all of history, with its endless violence and wars reveals.
Posted by: truthseeker | July 10, 2013 at 10:42 AM
"I don’t remember ever hearing about children NOT BEING ABLE TO SPEAK when I was a kid."
A lot has changed since then. In 1950 for example we as a country spent 4% of our GDP on "health care"; we spent almost NOTHING on :"vaccination". Sticking needles full of toxins into children was not a BIG INDUSTRY. We had an HHS who mostly stayed our of our lives. We did not give our children toxic drugs unless they were seriously sick. We NEVER shot up a pregnant woman with MERCURY, ALUMINUM and other toxins. By and large we did not take our children to doctors unless they were seriously sick; every mother knew how to stay up with a sick child and use honey for a sore throat ect.
But all that is not good enough now; we have to spend 2500 dollars to shot up our children to meet HHS's "schedule" We take our sick child in and they get shot up; "it will not hurt them". We take our well child in and they get shot up; "got to keep the bugs away".
Time to stop the insanity folks; NO MORE "wellness visits"; NO MORE "vaccinating" pregnant women: NO MORE "the doctor knows better.
They have PROVEN they know very little when it comes to autistic kids and healthy kids.
“Unthinking respect for authority is the greatest enemy of truth” Albert Einstein
Posted by: Lou | July 10, 2013 at 12:34 AM
Vaccines!
Posted by: erin | July 09, 2013 at 07:02 PM
I can almost deal with my son being non-verbal. However, being non-verbal makes him non-free.
And being non-verbal is even more challenging in a world where so many are non-listening.
Posted by: Louis Conte | July 09, 2013 at 05:37 PM
Anne,
I just left the IACC meeting (which is still going on) and I will say I was happy to see that
they gave Portia Iverson about 45 minutes to present on non-verbal autism. She said
that there are no solid numbers telling us how many people on the spectrum are non-verbal but it is most likely somewhere between 25 and 50%!! So 1.5 million people with autism--
possibly as many as 750,000 people who can't talk. That should make people think they are living on another planet. Like Kim said, humans are meant to talk why the &^$#*&^
is this happening and why isn't it a national emergency? As frustrating as this whole autism epidemic nightmare is, I will say there was some rays of hope today at the IACC. Lynn Redwood should be beatified for her contributions and lo and behold Dr. Frye and Dr
Buie were asked to attend and gave excellent presentations that seemed to get some
attention by Dr. Insel.
Posted by: Brooke Potthast | July 09, 2013 at 04:33 PM
If my son used to talk and talked a whole bunch and loved talking and wants to talk again more than anything and has so much he has to say but he can't get the words out then do I still have to call him nonverbal?
Posted by: AutismGoAway | July 09, 2013 at 03:26 PM
Great post! I am so liking the way AofA is trying to break down all this autism acceptance that is happening. I want my son to be accepted but I don't want his suffering to be accepted! Also, sometimes when people are accepting they only end up seeing the autism and they fail to see the unique human being that is under all those stims and behaviors. You don't have to love my son's stims to love him.
Weird words that I had to learn after he got autism: "Nonverbal" and "neurotypical". I had to accept these words. They are the jargon and they are what is politically correct and I had to listen to others use them and use them myself but they never reflected our family's experience or the tragedy of having a happy baby who talks all day and then he can't get words out and when you take him to the beach he runs back to the parking lot crying because somehow the open expanse of the beach and water overwhelms his visual senses.
And when a therapist uses the word "Autistic" and it grates on me and I want to scream "Don't use that word!" I don't because I would not want to alienate anyone who could possibly help my son but this is 2013 and we don't call people "Cancerous" if they have cancer.
Yes, as a parent I feel pressure from the world to accept and even celebrate autism and I feel like talking about the tragedy of regression or a desire for cure is politically incorrect.
Posted by: AutismGoAway | July 09, 2013 at 03:21 PM
Taximom, you are right on! Avon and Estee Lauder, also big players in the breast cancer industry, manufacture many, many products containing known or suspected carcinogens. Playing both sides of the fence and profiting from doing so. Hmmm, now did they learn that from Big Pharma, or vice versa?
Posted by: Sue Keller | July 09, 2013 at 02:58 PM
@ Sue Keller: We ARE catching up with breast cancer, and I find it very frightening.
Women submit to having their breasts squashed and irradiated in hopes of finding cancer at an earlier, supposedly more treatable stage. But those mammograms are capable of exacerbating the growth of existing cancers, and even CAUSING cancer where there was none.
Remember the 1970's, when it was announced that we were "waging war on cancer?"
We seem to be losing that war. Breast cancer cases have increased, exponentially. Is it early detection? Better diagnosing? Environmentally caused? Or is the medical intervention that was supposed to save us actually causing more harm than good? (And don't those questions sound familiar?)
And yet, we have now accepted as "necessary" and even "normal" the terrible and even deadly side effects of chemotherapy, just as we are told to accept severe adverse reactions from vaccinations.
Oh, and like Autism Speaks, the Susan B Komen foundation has become a front group for the pharmaceutical industry.
Yup. We're there already.
Posted by: Taximom | July 09, 2013 at 01:24 PM
I remember as a kid learning the word "mute" as it related to someone I was reading about who couldn't hear. I learned that not being able to hear was the reason why a person would not be able to talk. I never personally met anyone that was mute. It was rare.
So much for better diagnosing.
Posted by: Linda | July 09, 2013 at 11:44 AM
I never really thought of using the word "mute" since my son always made noise. This is called "vocal stimming." If I were to have described him as "mute" people wouldn't understand. They would ask if he was also then deaf (he isn't). When my son began saying a few words, his teacher still refused to call him verbal and instead called him "functionally non-verbal." Doesn't that seem like an oxymoron? It certainly doesn't sound encouraging. When my son's speech therapist was filling out his initial evaluation she grimaced as she explained that there was one category lower than "severe" and that category was a "profound" language deficit.
Both my husband and I were "late-talkers" and I didn't speak until I was 24 months old; however, I began speaking in complete sentences with no baby-talk. When my son wasn't speaking by age 2, I purchased a book about late-talking. It's nothing new that children might not speak until age 3 or 4, especially if parents are bi-lingual (we aren't). I didn't think my son had autism, especially since we had a home birth with no interventions and we did not vaccinate him (except for vitamin K and maybe the eye-drops).
Posted by: Nicole Mytels | July 09, 2013 at 11:44 AM
My child is verbal but it doesn't make the school system take him any more seriously.....His short term memory is very poor so he has much difficulty learning new things. When confused or excited or startled or afraid, he will often answer yes to any yes/no question. He sometimes mistakes the thought of doing something with the actual action of doing it and confesses to doing something when he didn't do anything. He struggles with self-regulation and it's like his conscience is talking when he says things to himself like, "I have to keep my hands to myself." He perseverated in speech when a little boy; now he has learned to substitute reciting movie lines, which is more socially acceptable in our neck of the woods. He has meltdowns sometimes...even with being verbal, there seems to be a disconnect somewhere and he has no words that express his deep frustrations.
The wording in these articles are, I think, directed mostly to people who have no first-hand knowledge of what it's like to have autism or to live with someone who has autism. Doesn't the story arc go: person with disability "overcomes" their disability and inspires millions [Temple Grandin]. Next, more people become aware of the existence of the disability through the media (including movies: "Mercury Rising" and TV: "Parenthood"), while acceptance and tolerance are advocated. Then, more and more details [elopement, meltdowns, being non-verbal are currently in the news] about the disability are disseminated to the public, so that people become more knowledgeable about the challenges faced by people with that disability and the need to finance special education and therapies. In the case of autism, we're being groomed as a society because of the coming tidal wave of adults with autism who will need assistance and supervision for life and because of the continuing increases in kids with autism we see right now.
If you stop to look into it, you'll see a parallel with breast cancer. We have been groomed to support breast cancer victims and lionize the survivors. We have the pink ribbon campaign (blue light bulbs and puzzle pieces for autism). We sign pledges and collect money and run and wear t-shirts and make rich the charities associated with breast cancer - Susan G. Komen, Avon, and Estee Lauder [Autism Speaks for autism]....but what we haven't done is find a cure, only treatments that work great for some and not so well for others [biomed recovery and ABA for autism]. But we have learned to accept breast cancer, not to fear it being contagious. We have learned to accept the physical side effects that may accompany treatment and not to turn away from the woman whose hair may have fallen out. We have learned that a woman is not just her breasts. Autism awareness and acceptance is not there yet...nascent breast cancer campaigns have been around since the '60s. Another 10 or 20 years, and we may catch up.
Posted by: Sue Keller | July 09, 2013 at 11:22 AM
Kim, You asked, "Would media care?" The answer is ABSOLUTELY NOT.
They don't care that autism is a pandemic across this country.
They don't care that officials have remained clueless for two decades and have never even called autism a crisis.
They don't care that millions are spent in phony research with no worthwhile results.
They don't care that tens of thousands of parents say it was the vaccines their child received.
THEY JUST DON'T CARE.
Anne D.
Posted by: Anne Dachel | July 09, 2013 at 10:19 AM
This story made me angry as I wrote it. Seeing the press adopt the word "nonverbal" so casually is inexplicable. These kids can't talk.
I like Kim's title and I have to remember that when people couldn't talk we used to say they were MUTE. Imagine parents saying their children are MUTE. That sounds like a real handicap. My first reaction is to ask why.
NONVERBAL sounds strangely like an option. Kids are either VERBAL or NONVERBAL. It's like a choice they've made.
Anne D.
Posted by: Anne Dachel | July 09, 2013 at 10:09 AM
""Brooks is normally nonverbal." "Non-verbal" is a new normal for children. We need to get used to it."
In my admittedly uneducated ... some would say unlightened opinion .. we live in a world that requires we be "politically correct" in our thoughts and behaviors .. or .. we run the risk of being labeled "intolerant" of the thoughts and behaviors .. in this instance .. "expectations" .. of others.
So, when someone lectures me that I "need to get used to a new normal" .. such as .. "nonverbal children" .. they are not necessarily asking that I "accept" that "new normal" for what it is .. they are asking I simply have "tolerance" for it.
The moment one learns to be "tolerant" of non-verbal children .. their "acceptance" will soon follow.
I predict somewhere in the future .. anyone simply asking the question "where did all these non-verbal children come from" will be silenced by mean-spirited accusations of their being "intolerant" of non-verbal children.
(By the way .. my beloved grandson is non-verbal)
Tolerance is a virtue .. but .. like all virtues taken to the utmost extreme .. tolerance can easily become more "vice" than "virture".
Posted by: Bob Moffitt | July 09, 2013 at 06:32 AM