Who They Might Have Been: Understanding What 1 in 68 Really Means

We all knew the rate of autism was climbing, as it has been from the beginning.  What is frustrating is that a local news station would rather run a last minute segment on how to get ready for bikini season than to interview a gifted autism advocate a autism Mom, speaker, writer and long standing member of the autism community raising awareness and understanding of autism.  She was armed to discuss a nation crisis yet was bumped.  Maybe if people understood that a generation of children are being kidnapped right out of society and loosing all the potential to be a productive part of our world, maybe then they might start asking how and why and what can we do to end this epidemic.

I have been most haunted by the never ending rise in numbers.  Back when I first started researching autism it effected one in 100,000.  It was unheard of.  I had professors in college classes ask me to explain autism to them.  The handful of books on the subject was just that, a mere handful.  When John was labeled autistic, he was one in 1,000 and I thought that was one too many.  When I finally got to a point where I was talking and writing about autism the rates were one in 500 and I knew several children on a personal basis, not just online or via a telephone call, but in my own town.  Now in 2014 we get the newest data, which looks at 8-11 year olds in 2012 in a sample of states and we end up with a 30 percent increase in autism making the new numbers one in 68.

Somehow, it’s just glossed over yet again as if every spectrum person will be okay, and get on with life, no biggie.  If we take statistics and apply that same 30 percent increase year by year until we reach the children born in 2014, we get a heart stopping one in nine.  Let that sink in for a while, one in nine new babies born this year are heading for a cliff called autism and nobody seems to care.

1 in 68 | Autism Loss

I am as I said haunted by these numbers. I took time to look at what one in nine will mean to the graduating class of 2032.  I took a typical yearbook, took a graduating class of 120 people and found out what became of every ninth person.  This people will represent people missing from productive society in 2032.  Here is the list.

Diesel Mechanic

Bakery Owner

Two Business Owners, one made local business man of the year twice

City Worker in the Electric Department

Artist and Soap Maker small business owner

Computer Programer also class valedictorian

Landscape Artist small business owner

Died in auto accident while in college

Special ed. and Home Bound Teacher

United States Army, location unknown

Department Manager in upscale department store

Former bookkeeper, now full time Mom to five children, quickly acquiring grandchildren.

These people are missing.  They will not marry, they will not open business and employ others, they will not create jobs, or protect us the way fire fighters and army people do.  They will need care.  I think I am most haunted by the missing Mom.  What would her five children and or grandchildren grow up to become.  Not only is she missing, but her children and legacy. As a Mom I know my own son will never marry or have a family, and he will never open a business or join the army and that haunts me deeply.

Painting a picture of gloom and doom, if you see it that way.  I see it as screaming in the dark for the future for the lives that should never be kidnapped out of childhood and left dependent on society for life time care.  This is your wake up call, autism is way past the point of needing a month long awareness hype, but real questions and true answers.  Do your part speak up and speak out, the future of tomorrow is waiting on us to take a strong stand today.

 Cheryl.

13 Responses to Who They Might Have Been: Understanding What 1 in 68 Really Means

  1. I’m sorry. I get your point. However, my son with autism is not missing. YOU will not determine if he gets married or gets a job. You don’t determine his furture. He can accomplish great things, even with God’s autism.

  2. I hope he does. My son is missing…this year he SHOULD have graduated from college, also this year another two boys in my area should graduate from highshool. If we don’t wake up and start understanding just how many children are never going to be able to take care of themselves then we are in for a huge mess. I am that Mom making life long plans and I can tell you there are no homes, agencies ect ready for the adults of today, so add higher and higher rates and we are in a huge mess. PS when my son was 5 or 8 or even 15 I didn’t think he would be missing either, but reality for us is what is it. I wish you a much better outcome.

    • It sucks what happened to your son, but just because a bad event occurs does not make it an epidemic. Your son has autism symptoms developed later in life. He was not born autistic like my daughter, my daughter is not lost she is flying. She does not have problems, I am lucky she is near perfect and runs circles around most kids. Autism isn’t a disease or a epidemic, your son doesn’t have a problem you do, and shame on you for writing a book full of your experiences and telling the world that that is the standard. Don’t forget tour asbestos suit you will need it.

  3. Chris and Heather,

    Do you think it might be possible that you’re not seeing what Cheryl is saying in this post?

    While I realize that everyone has such varying and passionate feelings on the subject of autism, especially parents and those who may also be diagnosed with autism, her post is not meant as an attack. She is not saying that our children with autism are unworthy or incapable of accomplishing great things. Whether or not a child is born with autism or develops it later in life, he or she is yet another child diagnosed with autism… and as autism is a spectrum disorder, my son’s autism, Cheryl’s son’s autism, your daughter or your neighbor with autism will all live with their ‘version’ of autism very differently than each another with autism.

    While some children will grow to be adults that are more than capable of driving, going to college, holding a job, marrying or parenting, there are also some children that will grow to be adults who are unable to fulfill these visions… even when they have come SO far.

    Her post is not an attack. She is merely stating the facts. Autism is on the rise. That should be troubling. Because, while one person’s child is able to run and play with other kids AND have autism, another child is simply unable to do this. With the increase in numbers of diagnosis of autism, that would ALSO lend to a growing number of children-to-one-day-be-adults who are unable to do what another child-grown-into-an-adult *is* capable of doing.

    Attacking her or any one else for pointing out the differences in a spectrum disorder and their concern for the reported growth of the diagnosis (even in comparison to 5 years ago) does nothing for our kids. It’s ignoring the truth. Denying the future. A future of my son’s that may be very different from my friend’s daughter, which may be very different than your son. To help our kids, means we see all “sides”, all variations, and adjust our methodology, treatment, planning and concerns accordingly.

    That is all she is saying.

  4. Welcome Chris so happy to hear your daughter is flying high, quite a blessing you have in her. I have a blessing John as well sir, I sure do. He is deeply disabled after having a time of normal development that’s true. I guess you could say he is one of thousand that I know in that category. Sorry, but from my seat autism is a huge epidemic, or can you tell me where all these adults will live, who will care for them, and who will bath my son, trim his finger nails, comb his hair, help him dress, change his Depends and oh buy them as well shave his face for him, cook his special foods and feed him? Yea I live in that world, and I work with these parents and I listen to their concerns for the rest of their child’s life. The reason for this piece is to wake up people that do not know of the vast educational and medical needs that are not being filled. If we want ALL children to be able to succeed and live a independent life they need services, services that today are not in place. One better, lets start listing to the thousands of parents and hundreds of doctors who understand how and why late onset autism happens, and lets end it before it even has to start.
    Just for kicks, please considering my son is non-verbal, unable to care for himself, can you tell me how he does not have a problem? I mean he could be kidnapped and molested in a heartbeat and not be able to fight back.(Happened to the kid next door to me, don’t tell me it can’t) When he is hungry he cannot cook a meal or even fix a simple sandwich. When he has a seizure and falls he could kill himself, he has broken his shoulder falling during a seizure, trust me, it was a big problem that night. He would love to know how that’s not an issue, because he knows for him, it is. He also knows that he is in a home where he is loved unconditionally and the heart of our home, but sadly I am quite sure I’ll not live forever to care for him. So please step in and resolve our housing and money issues as you don’t see that as a problem. Thanks for the idea, I might just get on that book you think I should right, a lot of people have ask me to, I guess it’s time.

  5. My son struggles every day of his life! He has pain! He’s non verbal and struggles to communicate his needs and wants…..and really has trouble with his feelings and emotions. He’s ignored….he’s treated like he’s not there…..he faces discrimination and educational neglect every day of his life. All because he has this thing called “autism.” He was born neurologically different…..then was vaccine damaged making his issus MUCH worse.

    For every person with autism who thinks their autism is a blessing, there are 10 -50 more who are suffering. If you are fortunate to have an autistic child who is high functioning….and is fulfilled in life….that’s wonderful. The reality is, however, that MOST of the 1:68 kids diagnosed with autism are missing out….They are missing out on all the wonderful things life has to offer…..most will never live independently….most will never be self supporting…..most will not have fulfilling relationships with the opposite sex…..That does not make them any less important…..they ARE important and their NEEDS are important. We, as a society, are NOT doing a good job of addressing those needs and helping these individuals have a fulfilling, pain free life.

    I agree with Cheryl that these numbers are staggering….and frightening. I’m married to an Aspie. I get how successful a neurologically different individual can be…in all aspects of life. But what I see in my son and the hundreds of affected kids behind him in school is NOT that high functioning, neurlogically diverse group of kids aimed for success. I see non-verbal kids. I see kids struggling with potty training well into their school years. I see kids unable to cope with the sights and sounds of the day to day environment. I see kids in pain…with rampant gut issues, asthma, immune system dysregulation. I see kids that are suffering. I see kids that are missing…..missing the life they should have.

    God Bless you Cheryl for speaking the truth….and taking the heat. Your devotion to John, Mit and all those who follow them is exemplary.

    • Thank you Peg, for your understanding and support. You see it, live it and understand it, sadly you do. All my best to you and Mit.

  6. Thank you Cheryl. Wonderful post and explains my life and my grandson’s life so well. We adopted our grandson at birth and he has Autism. He is non-verbal. I share your fears, as well. He is still in diapers and I grasp at new therapies and treatments everyday of my existence. With that being said, what is going to happen to him when I die? He has been bullied at school and he cannot speak. The bruises on his arms told a sad story. He is not “gifted” he is sick. Mainstream doctors dismiss us with a pat on the shoulder. What is going to happen when the “special” classes at school are larger that the regular classrooms? It is happening each and everyday and we are dismissed. Our voices are many. Instead of finding fault in a mother’s struggles, why not support each other. That is the way we are going to effect change in country. Mainstream media call 20 cases of measles an epidemic, yet 1:68 children with Autism is sweep under the rug. Thank you again for your post Cheryl.

    • Thank you so much Pam, my heart breaks and I feel such fear for my son, your grandson, the young adult down the street from me. I wish I knew where they could go that is safe. I wish their medical needs were addressed and dealt with other than dismissed as typical autism. Please keep reading and stay in touch, we will fight, and we will love and care for each others child as best we can.

  7. WOW! Thank you for sharing what is certainly a thought provoking post for those who still think Autism is mostly what they see on the news: happy families with gifted kids who see/experience the world a little differently.
    For my son and the vast majority of the other families that I am acquainted with, the life their son or daughter may have had has been stolen. Let me be clear, the child isn’t stolen, they are not lost in their own world, they are wonderful kids/teens/adults who are severely challenged by Autism. They will never date, never mind get married or have a family. Work? HA!! I’ve been begging places to let my son “intern for free” stocking shelves or pricing merchandise, but no one wants him, even though he has his own personal 1 on 1 job coach provided by the state. My handsome, sweet, son will depend on me for everything until the day I die. Then God only knows what awaits him… I don’t even want to think of it considering the stories of abuse and neglect in groups homes where staff are paid minimum wage and have no training.
    We have lost so much and the scariest part is no one even seems to want to know why.

    • Thank you so much Jan, beautifully said. You nailed it our kids are here, but the lives they should have had, simply went with the wind. Praying for answers, let keep sticking together to solve at least a tiny bit of the issues.

  8. Thank you for writing this! You took the words from my heart and soul. I too believe that autism has robbed my child from all he was meant to be. Every aspect of his childhood has been changed and he can’t be a carefree child like most 10 year olds. Don’t misunderstand me he is my heart and soul, the reason I breathe. He is an angel on earth and has taught me what’s really important. However, I want him to lives life where not every little thing is a struggle.

  9. EXACTY Annmarie! John too is my world the reason I breath and my heart and joy. For that very reason it pains me more knowing that when I die, his world will forever change and much is unknown about that outcome. And they deserve more, all children deserve full and happy lives. Bless you and thank you for stopping by, I hope you stay with us and keep reading as we work to love and care for our special angels.

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