Yes Autism Really Does Suck and Then Someone Dies: Often The Person with Autism
By Kim Stagliano
Earlier this week I ran a post on HuffPo called Autism Sucks and Then We Die. It was a general audience version of a post I'd run here at AofA - trying to call attention to the ever advancing manmade autism epidemic and the real fears families face as we, the parents, grow older. And ultimately die. I try to engage commenters at HuffPo by responding to their comments, both those that are favorable about the post and me and those that take me to task. I can learn from everyone, and in particular, I have appreciated learning from people who themselves are on the spectrum. That might come as a surprise to some - it shouldn't. My writing style is pretty much my personality - open to conversation, sociable and ready to have a heart to heart or a head to head talk.
In particular, some commenters who said they were on the spectrum took my headline "Autism Sucks and Then We Die" to mean that I thought they themselves sucked. One went so far as to define himself not as autistic, but as autism itself. "I AM AUTISM." I promptly and politely disagreed. Autism is a medical diagnosis, not a option on the US Census. I was quick to say that I did not say that people with autism suck. And I told them of the old song by a Boston Band called "The Fools" from which I took the headline, having grown up in Beantown and heard the song many times:
Today in my Google alert there was a story that gave me a familiar pit in my stomach. Autistic Boy, 11, Dies After Hit By SUV. Another child whose life was cut short by his autism. Sure, some folks will say, "kids are struck and killed by cars every day, Kim." Yes. And kids drown every day too. But take a look at the headlines and tally up how many have the word autism in them. It's gotten to a point where when I hear "drowned" my very first thought is "Did the poor child have autism?" From the Houston article:
The boy has special needs and was in the care of his father when he wandered away as the father was doing laundry, said Estella Olguin, spokeswoman for state Child Protective Services.
Houston police officers said that Desmond Thomas, 11, who had autism, was with his parents at a nearby home, and he left the house by himself as his dad folded laundry about 7:30 p.m.
Another story quotes his Mom, "He was very impulsive and would jet as soon as he got a thought in his head," said Tina Thomas, Desmond's mother. "We never knew what he was thinking."
"He was being watched," Olguin said, "but he just wandered away. It's tragic." I'd write a bit more, but I think that last sentence sums up what I was trying to say on HuffPo. It's tragic. And I have to go update a blog called Lives Lost to Autism - something I do all too often.
RIP Desmond, and our hearts go out to his family.
Posted by: Opher | December 14, 2018 at 06:49 AM
Absolutely no doubt about it.
A deliberately set trap, definitely man-made.
Genocide in action.
Vaccinocide
Posted by: Hans Litten | December 14, 2018 at 08:01 AM
Is autism really a man made thing?
Posted by: Opher | December 14, 2018 at 06:49 AM
Lisa, Thankyou for your beautiful, inteligent words and thoughts.If I were your parent I would be so happy to see that you responded to treatments and became the kind of person you are. I doubt if there is any meaning to autism, but I know for sure that out of suffering can be born kindness to others. Please look for avenues in life through which you can help others. In this arena you may be able to do so much more than many who appear to have been very fortunate. You can also expect to go on improving all your life, but it will be so slow that you might look back after 20 years and realise that you no longer have some of the symptoms which you have now. and you will be so happy .Good luck to you!
Posted by: Cherry Sperlin Misra | October 08, 2012 at 02:37 PM
To Deb, Really, it seems that your brain is functioning quite well.
Thankyou for your honest comments and hang in there. Things can get better for you; life is long; someday you will be able to help others. Have you tried the biomedical treatments, such as lisa has used?. You are going to find improvements in functioning all your life, and maybe you can speed those up with treatments.
On this website, many of the commenters are thinking of autistic kids who have very severe autism , which results in they and their parents suffering a great deal. Isnt our concern largely about the suffering. We dont want to see any child, young person or adult suffer as a result of autism.
Posted by: Cherry Sperlin Misra | October 08, 2012 at 02:24 PM
Benadetta, thanks and a big hug to you too, and to Jen and Kim. When we were young, could we have imagined the disaster that autism would bring into our lives? One of my two younger sons has been married for four years, but it looks like he and his wife are not planning to start a family. My youngest son should be one of the world’s most eligible bachelors, but I doubt he will ever chose to settle down with a partner.
My younger sons don’t need “autism awareness,” nor will they seek having to settle for “acceptance.” I don’t think they believe the genetic theories of the sappy “experts” either, but they are more aware than I was when I was young that “s---” happens, and now we have the impostors, who frost the cake with smelly poop.
The only answer is to keep working to understand the brain impairment that prevents normal language development. Autism is not evident at birth. Like Kim’s babies, children who develop autism are exceptionally beautiful. All factors that may affect the brain, from birth through the early years of life, must be scrutinized. Medical interventions top the list.
Posted by: Eileen Nicole Simon | October 07, 2012 at 05:44 AM
Eileen
I am so sorry.
Hugs and a heart felt pat on the back to you!
Posted by: Benedetta | October 06, 2012 at 08:25 PM
Jen, thank you for your response to mine below. My oldest son just turned 50. He learned to speak just before he turned 6, and we thought a year later that he had completely recovered from autism. Sadly, in his late teens it was clear he would not go to college. I have participated in many parent groups over the past 45+ years; and no, parents of children with autism are not abusive. They are sad and often overcome with grief. We need to support each other.
Kim, thanks again for speaking out. Autism stinks (my generation used a different S word), but nothing hurts quite as much as those who believe their “recovery” should make us more hopeful and more accepting.
My son is higher functioning than most, but he is not employed and does not live independently. He is capable of doing useful work, but his not too bright public-funded case manager doesn’t seem to know where we might start. So, I put my son to work writing his memoir, which I published as an eBook on the Barnes and Noble Pubit website (http://ow.ly/9ZLr8). My son is thus a published author, and we are now hard at work on a second book.
Posted by: Eileen Nicole Simon | October 06, 2012 at 07:26 PM
Madalyn, absolutely, those difficulties (blindness, sensory impairments) obviously predispose those people to more accidents.
I see a lot of positivity in the idea that things can be made better for a person - for example Lisa found real benefits from chelation, others find dietary changes bring relief, eye surgery may be able to cure blindness. There is nothing wrong with wanting relief of symptoms that are difficult/painful. And I would point out again that you must be very high functioning to have written such a paragraph- i.e. you probably don't bolt, can probably toilet yourself and you can obviously communicate. So again, you really don't speak for those who can't.
Posted by: jen | October 06, 2012 at 05:23 PM
I disagree with basically this entire article. First, I am autistic (and before you say 'oh, but you're high functioning so you're opinion is invalid' I'm NOT high functioning)and it is more than a diagnosis, it is my brain and, therefore, part of me. My existence is not tragic and it doesn't suck. Yes, having an autistic child is challenging and stressful, but having such a negative view on your child's neurology doesn't make it any easier on you or the child.
Second, saying that his life was 'taken by autism' is absolutely ridiculous. He was hit by a car, not killed by autism. Autism is never fatal and by saying so you only further the misconceptions about it. If a blind person doesn't see a car coming and they are hit by it, it doesn't mean they were killed by blindness it means they were killed by a car.
Posted by: Madalyn | October 06, 2012 at 01:32 PM
Eileen, so sorry about the accusations hurled against you. There seem to be a myriad of so called syndromes where parents are wrongly blamed- now PANDAS. Having worked alongside Child Welfare I have seen parents who really have neglected or abused their children but something else is going on and it has become very obvious that we have minimal understanding of the infant/child brain and environmental assaults.
Posted by: Jen | October 06, 2012 at 11:57 AM
Kim, thank you for your honest outrage. Developmental language disorder is the primary and most devastating handicap for children with autism. In their research on Asperger syndrome, Cederlund and Gillberg (Developmental Medicine and Child Neurology 2004 October; v46, p656) reported:
“Forty-five of 92 children (49%) for whom fairly detailed data about early language development were available, clearly did not have normal language development at 2 years of age. It cannot be concluded that the remainder had normal language development.”
Thanks also for pointing out that autism is a medical diagnosis, and Jen, thanks for your comment below pointing out the life-long problems that families of severely affected children deal with. It has recently become chic for some to claim they have autism or Asperger syndrome. How unfair, especially because even high-ranking “experts” are being fooled by these impostors.
Maturation of the language areas of the brain is disrupted in children with autism. This is as serious as cerebral motor damage in children with cerebral palsy. Those who claim autism without language disability may have other neurological impairments, but some other diagnosis should be made, not autism.
--
My son, Conrad, had classic Kanner autism, and died at age 31 in a group home from a psychiatrist-prescribed overdose of Thorazine. Staff at the group home had advised the doctor to prescribe higher and higher doses to manage Conrad’s difficult behaviors. The same staff (with high school or GED education at most) also accused me of having physically and sexually abused him, based on information they had from a “facilitated communicator,” and I was barred from coming to the house for visits.
Posted by: Eileen Nicole Simon | October 06, 2012 at 06:37 AM
Deb, The way your brain works is not tragic ... Your brain Works well ! You are able to communicate proficiently (as evidenced by your post), and I assume you are able to care for yourself and live independently. Additionally, you are able to advocate for Yourself. All Wonderful things ! In my opinion, Kim was writing about the families who are not blessed with such high functioning autism. For many of us, our teenage/adult children are still impulsive to the point of being dangerous, some need constant supervision and care - this is the tragedy.
Posted by: jules | October 06, 2012 at 05:48 AM
DEB;
If they took your autism away -- that would be taking arthritis and asthma away - because it is all an inflammatory disease.
You might find you are focused more too, and even happier.
Posted by: Benedetta | October 05, 2012 at 09:31 PM
Sooo much just brushed aside so many stories hitting the headlines these days which make you think ...was the child autistic ??I am not going to list them but the one I read tonight was where his parents locked him away for eight years...
http://uk.news.yahoo.com/georgia-teen-locked-room-years-002841940.html
Posted by: Angus Files | October 05, 2012 at 06:43 PM
I was diagnosed with aspergers and have some neurological problems as well. Not everything has gone away by any means, but my symptoms were hugely reduced by intensive biomedical intervention. The whole thing has been extremely time consuming, difficult in every possible way and very, very expensive. Still, I try to keep an open mind that there may be some meaning in it that I haven't perceived as of yet. I respect people who feel it has contributed something positive to their lives. That is a good feeling to have, I think. But for me, the extreme struggle and pain, well, it doesn't seem like good. I believe this issue is a disease. I responded to medical intervention, especially chelation. It is hard not to conclude that I was poisoned in some way, an unappealing thought, but very likely true. If we don't recognize this, how can we change and take steps as a society that are wise for the future? People who support politicians and businesses that recklessly release mercury into the environment or into humans via flu shots should recognize the damage they may be causing. Every one seems to be running around talking about how Christian they are. Well, hello, say whatever you want but poisoning people so you can make a buck isn't Christian. (I am from a Christian background and know this to be true.) Even birds that are examined now have high levels of mercury. This is a hard planet to live on. It is a lot harder with ASD or caring for someone with ASD. That's just a fact. But I still hope I ultimately find some good or meaning in it. I know my whole family has suffered a lot.
Posted by: Lisa | October 05, 2012 at 01:27 PM
deb, that is great that you are comfortable with yourself, no one here would want to take that away from you. As you fairly point out yoursellf, you have Aspergers and are fairly high functioning. We are not necessarily speaking for you but for all those kids (and I work with many as an educational assistant) who cannot even speak, never mind write (some kids cannot even use simple communication devices to help), many cannot toilet themselves and they seem to experience pain. Many of these kids bolt and really need lots of supervision which can be tricky at times. There WILL be a higher percentage of these kids who have tragic accidents- wandering, drowning, care accidents etc. If you don't see that as tragic then I'm sorry but we have very different definitions of what tragic is. Please don't assume to speak for those kids.
Posted by: jen | October 05, 2012 at 01:01 PM
No, my autism is not a diagnosis--it is a part of who I am. I identify with being autistic as strongly as I identify with my gender--perhaps even more so--definitely more so than I identify with my race or nationality. Gay people used to have a medical diagnosis, too, but that changed with time.
I have asthma, I have a touch of arthritis, I have brown hair--take them away and I would still me. I AM autistic--take it away and I would no longer be the same person. Would I be happier? I don't know. But I wouldn't be me. If there were a pill that could 'cure' me, I don't think I'd take it.
My existence as the person that I am is NOT tragic. But the way I've been treated by my fellow human beings has often been. I'm lucky to be high-functioning enough that I could have been had a pretty good life, if only a few accommodations could have been made when I was younger, but most people had never even heard of Asperger's back then. I failed at school, failed at work, failed at interpersonal relationships....and yet I can't bring myself to say that my life has not been worth living and that I'd rather not have been me. I'd rather there had been more acceptance.
I find the idea that the way my brain works is tragic to be appalling.
Posted by: deb | October 05, 2012 at 11:39 AM
My son is HF and 16. I still need to pay him (rewards) to learn to look at driver faces to ensure they see him. The other day he almost got run over by someone who was at a stop sign. She was looking on the right side for on-coming traffic in a one way and didn’t see him in the crosswalk on her left side a few feet from her van. If hadn’t yelled at my son to stop there is a chance he wouldn’t be here today. I’ve tried to explain to him that not looking at drivers for their intentions or to figure out if they see you could hurt or kill you - but I don’t think he believes me.
He walks a mile each way to school every day.
Go ahead and tell me autism is a good thing.
Posted by: dickey46 | October 05, 2012 at 10:48 AM