Decreased Brain Levels of Vitamin B12 in Aging, Autism and Schizophrenia
Dachel Media Update: Songs in the Key of Strife

The AutismLand That Neurodiversity Forgot

Exist
By Kim Stagliano

The push in books, the media, journals, among politicians to normalize autism, to spread lies that autism has always been among us in the vast numbers we face today, to make it appear to be something that is just a brain difference, or worse, an improvement over mere mortals is disrespectful and demoralizing to all of us who have children on the spectrum. 

Below are videos from a Mom documenting her son's struggles over a year.   For her child, Kreed. For her family.  In my family we have 21

Mia floor
5:20am. Waiting for her iDevices. Up since 3:00am.

years plus 19 years plus 15 years of hardship. There's no point in sugar coating autism here. If anyone thinks this Mom (or I) show disrespect or that we don't accept or love our kids - please just find somewhere else to read.  Autism here is a fractured fairy tale.

The only way we're going to see any sort of serious acknowledgement of the severe impact of autism on individuals, families and society is by taking a hard look at reality.   These videos provide that.  Send us your own videos if you'd like.  We'll run them not to expose our kids - but to protect them.  Patronize us with palliative care?  No thanks, Hillary.  Lump our kids in with "normal" special ed and disabilities?  You think we have special schools for autism, sensitive Santas, autism day at theme parks, additional special education masters level certificates in autism because autism is the same as traditional developmental disabilities or because it is VASTLY different? Get real, people. Open your eyes. 

No one wants to share the dark underbelly of our lives.  The trauma of autism on a family. I see friends whose kids seize weekly, daily. Friends whose kids have such gut problems that they can't go to school and need a feeding tube. Marriages collapsing under the weight of the stress. Bank accounts ransacked. THIS SH*T IS HARD.

Here?  We don't sleep.  We're up at midnight, 3:00am, 4:00am.  We don't go back to proper sleep. Ever. One daughter wants Nick Jr to watch the schedule as each half hour ticks off - not the actual programs.  One daughter wants her DVDs in order in a case and 3 i Devices on which to stare at screen shots from HooplaKidz toddler videos.  One daughter just plain wakes up due to the noise back and forth in our upstairs hallway.   By the time 5:30am rolls around, we've been pacing, putting back to bed, moving over, hiding iPads and remotes for hours.  Then we go to our jobs. And function. Sort of.

Share your videos. Show up in front of politicians with your precious child.  My girls make grown men weep.  That's the severity of their autism - juxtaposed with their beauty and precious personalities.

Kim

 

###



###



House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.  101 Tips for Parents of Girls with Autism is also available.

Comments

Ettina

"The neurodiversity movement is a form of bullying. I have been bullied for 50+ years for not being able to graciously accept autism."

Seriously? You feel bullied because someone actually wants people to like your child? What kind of parent are you?

Have you ever stopped to think about how you would feel if you were autistic? How your child will feel, if someday he or she reads this stuff online? Attitudes like yours have led autistic teenagers to attempt suicide. And you call *us* bullies?

Grace Green

Thanks Gail for correcting my mistake. My condolences to Erin.

Gail

Just an important FYI-- I did not post this video of Kreed nor am I his family member. I'm just a follower of Kreed's blog/facebook like thousands of others and admire Erin for her dedication to Kreed and doing all she could for him. Autism is a serious disorder not a quirky, fun way of being. It is important for people not to forget that fact!

Grace Green

Gail, I thought you were very brave to post this video of Kreed and it saddened me greatly. I'm sorry to hear of his passing and pray for peace at last. I hope you will protect yourself from the nay-sayers on this and other threads by ignoring them. There are many on here, including an Aspie like me, who support you and all the injured children, and wish you well for the future.

Benedetta

So, much pain!
I am sorry he had such a life of pain. I feel sorrow for the whole situation and how it ended.

Jeannette Bishop

Very sorry to hear Kreed has passed on, Gail. Sending prayers for peace for him and your family.

the cult of neurodiversity

Maybe, just maybe, the loud moths of neurodiversity such as Jessica Wilson here (Diary of Mom) could learn a lesson from Kreed's life and admit that autism is not rainbows and unicorns...but I highly doubt it. Too busy tooting her own horn. Excuse me while I puke.

From Diary of a Mom today:

"So my friend, M at Invisible Strings texted this morning. He was as blown away as I was to see that Diary had crossed the 300,000 follower threshold, so he suggested (with his trademark sarcasm) that since we've got so many people here, we should start a cult. I promised to take it under advisement.
In the meantime though, I have another thought. In order to celebrate 300,000 readers, I want to take the spotlight and turn it where it belongs. And to do that, I need your help.
I am going to post links to Facebook pages run by autistic people. What I ask is that you 'like' the pages. That's it.
It costs nothing. It takes almost no time, and it doesn't involve changing names, turning over worldly possessions, or waiting for alien transports to arrive. In short, it's the easiest thing you'll do all day.
Once you've liked the pages, stick around and read what they write. Click on the links they share. See what's important to them. Think about why it is.
You don't need to announce your arrival. In fact, lurk for a while.
Watch the comments on those pages. Take your time. Listen. Get to know the dynamic and the language before jumping into the conversation. If you find yourself feeling defensive or confused, walk away. Come back later. Listen some more. Learn.
It might be the first time that you're entering a space run by people whose neurology differs from yours. Think about how that feels, to live that way All The Time. Remember how important it is to have a safe space. Respect the fact that that one isn't yours; it's theirs.
I talk a lot about what I believe to be the real mission of advocating for others: helping them to access their own voices and then listening and respecting their agency when they use them.
With over 300,000 people here, I have a responsibility to take that one step further. Not just to listen, but to help to amplify those voices so that others can listen too.
So that's what we're going to do. I hope you'll join me in celebrating Diary's growth by listening, not to me, but to the people whose lived experience will always, always be my guide.
Thank you, from the bottom of my heart, for being here and for helping to raise the voices of those who need to be heard. Ready? Here we go ..."

Gail

Tragically Kreed just passed away yesterday. The past few months he was in severe pain and could not breathe properly. When the neurodiverse assholes preach about how wonderful autism is maybe they can think twice and think of Kreed and the horrid medical conditions that go along with severe autism.

Hildegard Martens

My daughter has an OCD and autism diagnosis. She is nonverbal. Her communication skills have been measured between 18 months to 24 months. She is 22 years-old. She was diagnosed before age 2 and received many years of 1:1 ABA and discrete trial learning. I pushed for the OCD diagnosis to help explain her difficulties. I tell people to imagine the suffering of OCD. Then I ask them to imagine having OCD and not being able to communicate. I have been told to give her a keyboard. My daughter's self-injury is so severe that she has broken her nose with her own fist several times over the past 5 years. I am told by some that it is wrong to say she is "severe". I am told ABA is abusive. I am told I should accept her as beautiful. I was kicked out of a support group because I mentioned the FACT that the U.S. Government has paid out millions of dollars in vaccine injury claims. The moderator of the "support group" said my comments were offensive because I suggested autism is the result of damage. What? I love my daughter. She is amazing. But, she suffers. Horribly. And, because she suffers, I suffer. I have tried to go to support groups. They were full of moms with young sons who wanted to talk about basketball
Leagues and band practice. They don't understand the difficulty of getting respite when your child is dangerously aggressive or has had to go to the ER from a self injury. One group sent out a message warning parents to stop posting videos of their children having "meltdowns" because it would effect their ability to get employment. My reality is so far from that.
Not only is there little support for those of us who are trying to help our children, but we find ourselves bullied by parents who have a whole different agenda. It's lonely. And, it gets worse every day.

Patience (Eileen Nicole) Simon

Andrea, thank you. And John Elder Robison, thank you for participating in conversations with those of us trying to cope with severe autism. I believe you live in Massachusetts, and may have occasion to travel to the Boston area.

Randolph MA is interesting, because the Higashi School is there, and I would encourage you to visit this wonderful school at one of their open houses. The school occupies the buildings that once were the Boston School for the Deaf. The cochlear implant has changed the outlook for children born deaf. See the book by Cochlear implant surgeon Dana Suskind, "Thirty Million Words, Building a Child's Brain" on the importance of language development (spoken language).

I have been reading everything I can find for the last 50+ years on language, the brain, patterns of brain damage caused by interference with aerobic metabolism (including toxic substances). I went back to school for a PhD in biochemistry, then returned to my former work as a software engineer. Engineering actually has provided great insights for how brain circuits may work.

I am trying to learn to write. I hope I will be able to write something that a publisher might think as interesting as neurodiversity. Meanwhile my ebooks are out there, hopefully forever. I will continue to submit comments for the IACC Public Record, and I am asking for discussion by medical members of the IACC, which is probably hopeless...

Jackie

The following is what the Neurodiverse advocates want to sell the world in a nutshell. BTW, Diary of a Mom at work again here. Her full time job seems to be convincing people autism is just GREAT!

Courtesy of Jessica Wilson:

"Yes, yes, yes. So very much yes.

‪#‎ThankYouJersey‬
{image is a graphic reading, "Parenthood is about raising and celebrating the child you have, not the child you thought you'd have. It's about understanding your child is exactly the person they are supposed to be. And, if you're lucky, they might be the teacher who turns you into the person you're supposed to be. - The Water Giver"}"

What she and the others fail to understand is that severe autism and all of the conditions that go along with that is a completely different situation from what they deal with day in and day out and parents of kids with the more severe diagnosis will never "celebrate" the limitations and pain (in terms of medical conditions) that come with that dignosis. Never will the John Robison's, Jessica Wilson's, Ari Neiman's and all the others of the Neurodiverse world understand what severe autism is like on daily basis.


Hera

Hi John Elder Robinson, thanks for clarifying. By the way;I see a huge difference between genetic and environmental autism. I suspect genetic autism or high functioning aspergers, is often just a beautiful variation on the human experience, part of the rich tapestry of different skills and abilities that make up the human race. Non verbal, severe autism, caused by vaccine injury or environmental trauma, imo that is a very different experience, and one where the choice of a cure should be available..

Re a cure for everyone; I'm a believer in medical freedom. If an individual doesn't want a cure, they have every right to refuse, just as they should be able to refuse any other unwanted medical treatment.But by making sure that funding never goes towards "a cure", or even "a treatment"then all the studies are doing is marking time, and taking away everybody's freedom of choice. There are a lot of biomedical treatments showing promise; but we have no studies to indicate what subsets of people with ASD would find them most useful.
Julie; both John Elder Robinson and I are face blind, and we both want a cure for this. Your video is from one woman who says she does not want a cure. Fair enough.
But; I want a cure for my face blindness. My son, who has some speech, says he wants his speech apraxia cured. At the moment he is working very hard at speech therapy because that is his only option. And he wants to be able to understand social cues better. Is he allowed to want these "cures"? Is his voice also legitimate?
Developing "treatments" or "cures" allows choice. Making sure no one has any options; who is that helping? Or have you decided that my son has to limit his life because it suits you better in some way? Do I have to be face blind for the rest of my life because it will make some random stranger feel better to know that no one is helping me?

John Elder Robison

Andrea, you make a good point and I'm sorry to have appeared inconsiderate. It was not my intent. So many people say "if you just came and saw my child," which implies that I have not seen severely impacted people, and that does not help me to address the problems. I understand that her child is different from me, as every child is unique. And I support finding both ways to help him and figuring out (if possible) how he came to be disabled as he is.

Hera, I do not oppose cures for disability. I don't think the concept of cure for "all of autism" is realistic, but I recognize others have different views.

I too would like to be cured of face blindness. But in the absence of that, I have learned to get by. I have that too.

I certainly support the development of cures for brain damage. That is a fundamentally different thing that addressing problems such I have in daily life, but I recognize the need and support both. We have kids with lead poisoning here in our school and I know that sort of thing can do terrible damage.

I also support research into environmental causes of autistic disability. We've found factors that seem to be real, and crippling, and they should be followed through. I talk about inheriting autism from my dad, and passing it on to my son, but I recognize there are others where autism appears out of nowhere and in a very disabling fashion. Clearly that is a different and probably more severe issue.

Carolyn M

John Elder Robison,

Unless the cause of the increase in prevalence of autism is found and stopped, the money necessary to provide services will be completely insufficient. At that point, government will have set priorities for funding services. Those individuals who can more readily become "productive members of society" (I.e. the less severely affected) will receive services first. There will only be minuscule crumbs (at best) for services for those who have severe autism.

Julia

I'll just leave this here.
https://www.youtube.com/watch?v=TXnb-jXl7uw

Andrea

John Elder Robinson you are talking at Eileen Nicole not to her. You seemed to pluck 2 points out of what she had to say and rather rudely dismissed her suggestions. And then proceed to brag on yourself about all you do.

A Long time ago David Royko wrote an article titled Should Autism amd Aspergers get a divorce? I'm sure you've read it.


I'd say yes. How about you? You have a parent asking you to get more involved and you shut her down. She tells you how horrible and miserable her son's life is and you can't be bothered acknowleding her pleas for your attention to her son's situation. You're too busy. If you paid that kind of attention to her son you'd have to do that for everyone you protest. No. Your engaging her request would show people like me you are really concerned about your more severely impacted "autistics".

But you don't have to do anything you don't want to.

Eileen Nicole thank you for all your wonderful intelligent contributions you make here at AOA. I know autism is horrible. And doing nothing to stop the influx of more autistic people is shortsighted and detrimental to those already in the system.

Hera

John Elder Robinson,
Firstly, I really applaud the fact that you do care. And I am glad that you are on the IACC.having a humanitarian who cares about people with autism, regardless of his philosophy is very important. Never underestimate the power of a good person.
The one thing that worries me though; and maybe I am misinterpreting you;
but if you consider that a certain subset of the worse effected people are indeed suffering from a vaccine injury,or even just brain damage, then the dynamic changes. Why are these people only allowed to be cured of co morbid injuries? Why are they not allowed to have a cure for the brain damage that is influencing their life in this way? When people decide that other people , so much worse off, do not deserve a cure, because they themselves, living independently, don't want it; is that kind? Or even being a good advocate? IS it possible that your opinion of the need for a cure would be different if you were trapped in a body that could not speak?

By the way, I have mild face blindness. Seems to run in my family. And ,speaking just for me, I would like a cure, please. I want to be able to identify my acquaintances easily, ask about their children, or say how well they did in the school play, instead of spending half the conversation talking about the weather while trying to make sure they don't realize I have no idea who they are.
If advocates explain that they want to spend money on face gazing, but have no intention of fixing the underlying mechanisms, because that would be "curing" then what is the point? And why should services be the only option? What happened to actually helping people become independent and make choices for themselves?

John Elder Robison

Eileen, you say, "If I cared, I would visit your son and read your memoirs." Please. If I did that for every person I would never have time to do another thing. I think my caring is amply demonstrated by my service on government committees, my writing, my teaching, my school and students, etc. But you are entitled to your opinions.

You say "services are a weak approach." I'm sorry, but services are what's real for your son today. You worry about what will happen to your son when you are gone. Services is the only answer - weak as you say it is.

What you may be missing is that services and research are not mutually exclusive. One major crisis today is in services, or their lack and efficacy.

Patience (Eileen Nicole) Simon

John Elder Robison, I wish my 53-year-old son didn't need better services. I wish his brain injury at birth hadn't happened. My hope for the future is that brain injury can be prevented.

If you were really interested you would come with me to my son's group home in Randolph MA, and come with us on one or more of our outings. For the past 13 years Nantasket Beach in Hull MA has been our favorite retreat, to work together on our memoirs. I have self-published two of these on amazon.com because publishers favor authors who praise so-called neurodiverse accounts of autism.

If you were really interested, you would read our memoirs. They are available at amazon.com for 99-cents apiece. We are working on our 3rd, and I am attending classes and workshops to learn how to write.

Most of all I want to write about the brain, and how it is injured by oxygen insufficiency after the umbilical cord is clamped before breathing has been established. Even on AoA very few take an interest in what neurological systems are affected by asphyxia or toxic substances (like mercury, or prenatal exposure to valproic acid, or alcohol).

Autism is horrible. My son is about as high-functioning as a real autistic savant can be, but the life he leads is miserable. I am trying to help, but the increase in prevalence of autism has to be caused by something, and that something must be found out and stopped. Focus on services is a weak approach.

John Elder Robison

Thanks for all your feedback on my comment. Let me offer a few responses to what you said.

First of all, I have said we need better options for supporting people whose disability is severe, because we have so far done little or nothing to relieve their varied disabilities (seizures, serious GI issues, etc.)

When I write that, I do not mean that we should give up on trying to solve those problems. Rather, I am recognizing that medical science has not taken us there. Yet. So what CAN we to, today? We can develop better alternative living arrangements. We can fight for support for in home assistance, and respite care. In some cases we can fight for insurance coverage of existing therapies. I strongly suggest you join me in advocating for these things.

At the same time, I am still advocating for research into solving the painful and crippling complications of autism that too many of us live with. What's important to remember is that supports and research are two totally different issues, and we need both.

Several of you have taken issue with "neurodiversity" as if it were an organization or a tangible thing. It's not. When you speak to me about being "bullied by neurodiversity" I feel your pain over that, but there is no person I can turn to to help you. All I can say is, I do not bully you. And I suggest that much of what you feel is bullying is founded in ignorance of your true situation. The reality of autism for a college student is very different from that of some of the college-age young adults you describe here. And if you only know one autism it's easy to be dismissive of the other. May I suggest we all try to extend greater understanding?

The fact is, there are some gifted people on the spectrum, some in the middle, and some very disabled.

Some of you ask how many group homes I have been to. Actually, I have been to quite a few and I continue to visit them. Many of you know I have a school that teaches life skills in our car complex. A significant number of the students we see have intellectual challenges. That has given me an appreciation for people with cognitive challenges, both speaking and non speaking.

If I were to stress one thing to you it would be this:

There are many differences of opinion between the different factions of the autism community. People are all to quick to say, "You don't speak for me or my kid!!" But the fact is, the Secretary of Health and Human Services has chosen a few autistic adults, and a few autism parents, to represent the community on various committees. I happen to be both a parent and an autistic person And I take my responsibility to ALL people in the community seriously.

The best thing we can do is to band together around the issues where we all agree. The principal one is the deplorable state of services and support. The next is the lack of adult supports, and research into adult issues in general. The third is research into the serious co-occurring conditions like seizures.

In saying that, I am not saying "forget everything else." I am not asking you to change your beliefs. Rather, I am asking you to join me in focusing on targets one at a time, and proceeding step by step toward a goal we all want. When everyone goes in different directions, we get nowhere.

Best wishes
John

Shibi Baby

Thank you for sharing your experience with us.it helps the world to understand the struggles of a person with autism and the situation of the family passing through.It was really heart touching.

had enough of the ND crowd

The hundreds of comments on the ND blogs and elsewhere are even more concerning than what the ND blogger themselves write. It also shows how incredibly ignorant and discriminatory the ND crowd is to severe autism.

Here's a gem of a comment (and her attitude, sadly, is just one of hundreds):

"Laura Gabauer- I can not imagine me ever wanting to share my daughter's missteps with the world or publically humiliating her. I will never understand those parents who post vidoes of their kids at their worst forall to see because they think they are teaching them some sort of lesson"

Sure, Laura Gabauer, why would we EVER want to share and bring to light what truly goes on within severe autism? Why in the world don't we just lock our kids in a house so as not to upset the false image the ND crowd is trying to project.

The ND parents and advocates are doing their best to block the reality of autism by labeling any parent who wants the world to see what happens in severe autism, in order to wake the world up and to help their kids, as "public humiliation".

Laura Gabauer, you're wrong plus ignorant. The world does need to see the struggles a person with autism goes through in order to make everyone understand that autism is just not Ari and people so high functioning they have positions in Washington DC, write books and have fairly normal lives.

These people need to be called out. Enough is enough of this bullshit message they are sending on a daily basis.

Kim Stagliano

There's a paper bag test for autism, trust me. For those who do not know what that means, African Americans whose skin was lighter than a paper bag were considered more socially acceptable - and they discriminated against their brothers and sisters with darker skin. "Many churches, fraternities and nightclubs used the "brown paper bag" principle as a test for entrance. People at these organizations would take a brown paper bag and hold it against a person's skin. If a person was lighter or the same color as the bag, he or she was admitted." Same with autism severity. They want to claim every genius in history - they can have the monsters too. So......

Take your child to every GRASP event. Every ASAN sponsored program. Introduce your child. Walk out. (Hover nearby, of course.) Take video. See a company that hires the autistic? Bring your teen or adult child with autism. Ask for an interview. Tell them you will come back in 15 minutes. Leave. Hover nearby. Take video.

Let the neurodiversity community help us. They are the experts after all. They know more about autism than we do because they have autism. Which is like saying Steve Jobs knew more about cancer than his oncologists, but still. Let them have their belief system.

Inundate them with autism - report the results in the media. Raise holy hell when your kids are turned away, tossed out, denied access, discriminated against by others with autism. Tell the story.

KIM

JRR

"I have no use for the neurodiverse self-centered bullies. They couldn't handle our kids for one day. They know nothing about these medical issues our kids suffer from. As someone else said they view those issues as being completely separate from their "autism". Those "issues" are everything. They make or break a day. And honestly we all know big mouth ND advocates don't give a rat's ass about lower functioning people -their medical issues or anything else."

Exactly and Bravo Andrea. You hit the nail on the head. I read some of those blogs and facebook entries of the ND parents and advocates. They make it all sound so simple and brag endlessly about their wonderful parenting. Many of their kids are in typical schools doing very typical activities, they're going on high end vacations with no problems and money never seems to be much of an issue. As you said these parents couldn't handle for one day what we deal with day in and day out. They would crack under the pressure and money constraints of having a severely autistic child and would be singing a different tune if something like severe autism and all the related medical issues blocked their fantasy of what autism really is.

Wendy

Our son is 12 years old, nonverbal and considered severe. He has had self-injurious and aggressive behaviors on and off and it took us a while to figure out it was due to food. It took years of being on different diets, going on/off and seeing reactions for us to realize that he was reacting to salicylates, which caused aggression and self injury. Foods high in oxalates causing loss of potty awareness and frequent urination. If he has too many of these foods, he will have meltdowns, similar to the ones in Kreed's videos. I highly recommend parents do some research into what foods their kids are eating if they are seeing these behaviors. I know it's really tough to do restrictive diets, but it's even harder watching our kids go through the pain and suffering. We were skeptical of diets too, but we've seen such a big difference. Google salicylates and aggression or self injury and there is a lot of information.

Grace Green

Neither is tact!

Grace Green

As an Asperger person like John Robison I can see at least two sides to this question. Before I had read up on autism I too thought it was just the way I was made, and was very glad to find a like-minded community in ND. However, as soon as I found videos of severely affected children, similar to those above, I knew that autism is a brain injury, and it followed that I had it too, only not so bad. In that sense I think it's good that both ends of the spectrum attract the same description. I think it's very important that ALL people and families who have been affected by vaccine injury, whether by autism, autoimmune disease, ME, and all the other conditions, should come together to fight this thing. `it's great that Mr. Robison feels able to visit this site and comment, and that others have felt able to welcome him and tactfully put a different point of view. We need to keep up the dialogue with as many people as possible. If you had mild ASD and had a moderately good quality of life would you really want to believe that you had a brain injury? It's not easy. I hope no-one will be offended by my comments, but as an Aspie yact is not my middle name!

they're not just "wired differently"

What really gets me are the hypocritical neurodiverse parents who endlessly lecture us all about how their kids are just simply wired differently ("than the average bear"-see comment below. WTF does that mean? Grow up lady) and nothing is really wrong and WE are the ones that should accept our kids the way they are, that WE need to kiss the feet of the all knowing autistic adults who are simply trying to guide us foolish parents...yet these neurodiverse believing parents are also the very same ones who demand a boat load of ABA services, speech services, OT services social skills services and more from their school districts and insurance companies. If nothing is wrong then why are they seeking out and demanding these services?

Neurodiverse parents...HYPOCRITES to the very core.

Annie

Oh, whoops!!!! Did not see that "Hi annie" was from Mr Stone. Apologies!!! Author, please ignore my last two posts. And THANK YOU FOR ALL YOU DO!!!!!!!

Annie

Perhaps, sir, You could see your way clear to look into the science that explains the existing reality.

Annie

Mr Robinson,

Indeed sir, it is a catch-22,

If i call You out on Your disability, i invalidate Your advocacy. None the less, It is monumentally appreciated!!!! And i thank You!!!!!!

Janet Shouse

Hi Erin,
You may have a medical team that you are very happy with or you may live too far away for this to be helpful. But there is a clinic in Louisville, KY, that is specifically for people with developmental disabilities, called the Lee Specialty Clinic. One of the founders is a past president of the American Academy of Developmental Medicine and Dentistry, Matt Holder. Matt is a super guy, and I hear the Lee Clinic does wonderful work. Just in case you're interested.... Best of luck to you and your family.

Jenna Smith

"It is my opinion (and the opinion of many others) that the pharmaceutical industry and medical lobbies have championed the idea of Neurodiversity for the express goal of exonerating themselves of their role in the raging autism epidemic of the last 26 years."

Yes, and also the INSURANCE COMPANIES and SCHOOL DISTRICTS that do not want to pay for ABA. The first time I heard about neurodiversity was from the director of Special Services in our New Jersey school district, when my son turned 3 and I was attempting to transition my son's early intervention ABA program over to the school district. The director told me she didn't believe in ABA as it was inconsistent with neurodiversity. She gave me several scholarly papers on the topic from elite East Coast university scholars, and told me my son was "adorable", "a delight" and didn't need to be "fixed" or "changed". I told her nice try, you're trying to avoid your legal responsibility to pay for his evidence-based, medically necessary and prescribed therapy. It took a lawsuit to get them to pay. Sadly, many in our town bought her drivel and put their kids into programming that did nothing for their children. It makes me sick to think about it.

 Erin

And to answer one of the questions- Kreed has 10 equally complicated medical conditions and one of them is causing him pain. We are trying to figure out which one and that often takes months.

 Erin

Wow, thank you for sharing. So many people read the feel good stories of autism and while at times we have them too when Kreed is well, our life can also descend into what you see in the videos. Where sleep is scarce and everyone's body is hurting from the rages and we visit doctors desperately trying to find the pain that's causing his rages. He lives in a broken body and sometimes it's not pretty. We spend our days protecting him from himself and that is unconditional love. We sacrifice our entire life for Kreed, to give him some semblance of a life and help him live well while his body is racked with pain and he can't even communicate it correctly to everyone. This kind of autism exists and yet no one wants to talk about. No one wants to share it. No one wants to believe there are families that barely exist and just try to get through a day without breaking down or their bodies breaking. Support is few and far in between and almost none for families that have both medical kids and kids with severe behaviors and nonverbal. When Kreed is medical well he is a pure joy and light in this world. When his body breaks down, there is unrelenting pain. He fights us, himself and anything around him.
This must be shone. This must be understood. There are far too many families like ours with kids like Kreed and who don't know what to do.

Birgit Calhoun

Cherry Mizra! My sons problem were related to mercury poisoning. The poisoning caused kidney disease. My son also had a megaureter which was not treated. The kidney disease caused Vitamin D deficiency. Most people don't know that the kidney is an organ that makes hormones. One of these hormones is the Vitamin D metabolite 1,25 OH2 D3. Erik's kidney didn't make that very well. But what was worse, Erik had a bowel disease that was not diagnosed until after he had died. It was found at autopsy. The bowel disease also caused severe zinc deficiency. Zinc deficiency and Vitamin D deficiency go hand-in-hand because, in order to absorb Vitamin D, the body also has to have zinc. Zinc deficiency also causes delay in sexual maturation which was very obvious in Erik. So that should have been noticed when he became a teenager. It was not discovered until he was 30 years old. The Vitamin D deficiency caused a slipped femoral epiphysis. The non-diagnosis of this fact caused Erik to wind up in a wheelchair. I could go on. I could fill a book. Unfortunately I don't have the time.

the neurodiverse and their denial will only do more harm

"Brain injury and its causes must be the focus. I could be wrong, of course, but why can't damage of brain be discussed???"

@Eileen Nicole...this is an excellent and obviously very logical question you presented. Unfortunately the autistic/neurodiverse adults and the neurodiverse believing parents of kids on the spectrum are in denial and refuse to believe they or their children have any kind of brain injury. They honestly feel autism is just a different way of thinking. This is why it is so disturbing that these people are out there having a major voice in what should be looked at regarding autism. They berate us for believing in vaccine damage however these same people refuse to believe that autism is neurological brain damage/injury.

please look for Chiari 1

Just a note to all parents in their endless investigation of medical conditions for their kids. It is vital to rule out Chiari 1 Malformation in all kids on the spectrum via MRI. Make sure they are specifically looking for Chiari when doing the MRI. This gets overlooked so often and there are a number of kids who do have this and it can be addressed successfully. I often hope that Kreed's doctors have looked into this as he presents with such headaches and head pain. MANY doctors overlook this or don't even think to look for it so parents need to ask that it is looked for on an MRI.

"There appears to be an underserved population of children and adults with Chiari malformation and autism – the size of which is yet to be determined. Recent data suggests that a greater than expected overlap of findings in children diagnosed with Chiari Malformation and those diagnosed with Autism Spectrum of Disease (ASD).

Children with Chiari frequently have tendency to headaches, neck pain, speech and swallowing difficulties, sensori-motor disorders, gastro-esophageal reflux, disordered respiration and sleep apnea - the same findings that characterize ASD (Rimland,B..Autism Research Review International, 2005). Other shared deficits include loss of smooth ocular pursuit, dysarthria, abnormal motor initiation, disordered neuro-endocrine modulation within the reticular activating system and possibly cerebellar mediated alterations of cerebral activity (Courchesne, E. Neuroanatomic Imaging. Suppl 781-790, 2001). This overlap of characteristics suggests that these disorders may be co-morbid conditions. Furthermore, in the course of routine surgical correction of Chiari disorders, members of CSF have measured substantial improvement in pain, function, and quality of life in ASD patients ( Bolognese, Kula 2010; Henderson, 2008,2010).

Unfortunately, patients once diagnosed with ASD, usually at 1 -3 years age , rarely undergo neurological assessment and MRI to look for other co-morbidities, such as Chiari Malformation. Therefore, an opportunity for diagnosis and treatment is potentially missed. CSF investigators are presently investigating the prevalence of radiological abnormalities in the population of ASD subjects. If preliminary evidence confirms a critical threshold of radiological abnormalities, then the CSF will work with the Investigational Review Boards of two prominent Universities with three goals : 1. To establish the prevalence of Chiari related disorders within the population of ASD; 2. To develop clinical biomarkers to more readily select which patients within the ASD population need further evaluation; and 3. To determine in a randomized, prospective manner whether surgical correction of these established neurological disorders provides a significant improvement in neurological function, pain and quality of life in the affected children and adults.

The investigators believe that this proposed research represents a valuable opportunity to pursue a breakthrough in the treatment of some of the manifestations of ASD."

Patience (Eileen Nicole) Simon

John Elder Robison, also, the reason parents want discussions with medical experts is because autism is a neurologic disorder. Aphasia (loss of language) is among the most serious neurologic afflictions of adulthood.

Lifespan care for autistic adults is horrific, not to mention the hardships and grief having to care for a handicapped child. Better to learn how to avoid the need for group homes or institutions.

The IACC should request scrutiny of obstetrics and pediatrics as part of the strategic plan. I will continue to try to explain why sudden amputation of the placenta immediately after birth is a serious medical error. I never thought about umbilical cord clamping as wrong until people started contacting me after I posted my website conradsimon.org nearly 16 years ago.

Vaccination, on the other hand, is a highly visible pediatric protocol, and the "science" of epidemiology is not very convincing to many of us. Brain injury and its causes must be the focus. I could be wrong, of course, but why can't damage of brain be discussed???

Patience (Eileen Nicole) Simon

John Elder Robison, thank you for commenting on AOA. I hope you can convince the medical experts on the IACC to listen to parents of severely afflicted autistic children. Back and forth conversations with us would be most helpful at IACC meetings.

I submitted 30+ comments for the last IACC meeting. Over 200 pages of Written Public Comments were submitted by parents for that meeting. All we received as acknowledgement was a summary of topics brought up in the public comments. This is not enough.

I have already submitted four comments for the next meeting. You can see from comments here on AOA that the focus on genetics and neurodiversity is unacceptable to those of us dealing with this serious disabling affliction.

Andrea

Janet Shouse,

I also have a 20 year old (birthday yesterday) and he is severely affected and also has medical issues that completely affect his behavior. From watching Kreed's videos I'm sure his mother uses the medical process of elimination we do. Last year we thought my son's biting and chewing was maybe from his wisdom teeth. So we had them out. He still will bite and chew on things. Pain may be emanating from his gut. Gut issues have always been his chief problem. We decided the teeth should come out because we wanted to remove the risk of infection or complications later on in life when someone else will be brushing his teeth where ever he ends up living.
I have accepted that our life is always going to be about solving the mysteries of what makes him go from happy and content to aggressive and self-injurious. We like you have the list we check off. Usually we find something and things improve when addressed. It's a cycle that will never end.
I have no use for the neurodiverse self-centered bullies. They couldn't handle our kids for one day. They know nothing about these medical issues our kids suffer from. As someone else said they view those issues as being completely separate from their "autism". Those "issues" are everything. They make or break a day. And honestly we all know big mouth ND advocates don't give a rat's ass about lower functioning people -their medical issues or anything else.

Cherry Misra

To Birgit Calhoun, What were or are the bone and kidney disorders that you faced in autism.? I am not famiiar with this

Cherry Misra

To John Elder Robison, Thankyou for staying with this issue and doing your best to understand what other parents/autistic kids are going through. I know you could have given up long ago , finding that you were not on the same page as some others in this community. I hope your understanding will continue to grow. In your book you truthfuly and honestly told about your own childhood experiences. Lets al be clear on one thing: As a child, it is NOT fun to be different from other people and other children. The high functioning autistic kids also suffer a lot, No person's suffering should be diminished by others.

John Stone

Hi Annie,

In my opinion it is a bit of catch-22. I guess everyone has to make their best judgment, Asperger or not, and I think everybody who serves on a public commitee needs to be aware of the risks (having been on public committees myself and having been insufficiently aware at the time). Presumably, if you had Asperger Syndrome you might not be so good at taking subtle hints from the chair.

Birgit Calhoun

AutismGoAway! Thank you for letting me know that you agree!

Janet Shouse

I have a question for Kreed's mom, if it's possible to ask questions of her. (Honestly, I have not had the stomach to watch all of the videos, so she may address this question there, and if so, I apologize for asking.) But does she know what is causing his pain, beyond the self-injury? I hope I don't sound condescending, but we have dealt with similar behavior issues, and we looked at a number of possible physical health concerns to rule them out. (Checked for Constipation, GERD, couldn't get an EEG, so we have simply treated for seizures, and wisdom teeth.) We've also tinkered with medications. I don't KNOW that this was the cause, but our son is 20, and he had his wisdom teeth removed a little over a month ago. Since that time, he has had just a couple of incidents, and he seems much happier. Of course, that might change tomorrow. And Kreed's mom may have investigated all those possible causes, but I thought I would ask. I hope Kreed finds relief, and I hope his mom does as well. The stress of watching your child hurt himself and the fear that he may hurt you or others is intense.

Annie

I'm going to try to free the (my) elephant as respectfully as i can,

Mr. Robinson,
Thank you for advocating for autistic people! Your advocacy for both severe, and moderately affected people is appreciated and very much needed. So it is with the greatest amount of respect that I ask this question:

As a person with a disability that includes the description, "a lack of social awareness", do you think you possess the ability to know when you're being exploited? I ask this question sincerely, and genuinely, and hopefully its mention is not regarded as any measure of disrespect.

FTR, I would ask the same of any person on the spectrum whose advocacy included the promotion of the idea that autism, as we understand, (and are dealing with it) today, is an man-made, (relatively) modern-day epidemic.

Denise Anderstrom Douglass

I did not expect to spend my entire evening on this one article. Thank you, Kim, and AOA. Yes, it's time to push back, and hard. Nobody outside the community of the immediately effected gets it.

I am going to go ahead and post this to FB even though I know it's a hot potato none of my "friends" will want to touch. But like many of the people whose comments I have just read, I do get it. The neurodiversity movement or spokespeople are -- I'm sorry, pitiful. In my personal experience, the people who get this are parents and grandparents who lost a fully functioning child or young adult to accident, cancer, etc.,parents and grandparents who have lived every day with the loss of a normal child for no good reason, no good cause, or those who have lived with a child who survived but who did not survive with the potential they started with. These parents and grandparents are the people who understand.

It is time that we "conspiracy theory, radical, anti-settled science, anti-vaccine wacko coocoo-head nut-jobs pushed back. It's an election year after all.

And: they say. "nothing can be done." They say, "that's what group homes are for."

Well... I'm saying? That's a stinky-shit slippery slide to "that's what mass graves are for." My grandson does that same head-hitting movement. I hope people who read this and don't get what I mean will really, at least respect it. Ya know, maybe a lot of folks can't actually bring themselves to watch the whole unadulterated videos -- all three of them. Well, there but for the grace of God, goes civilization as we know it..."

Amy

The neurodiverse lunatics think we, as parents, have absolutely no right to speak for our kids or interpret the way they feel. Well, when your kid is screaming in pain, awake all night crying, pressing their stomach into furniture from pain and on and on I think we'd be pretty neglectful as parents NOT to interpret the way they feel. As for the parents of the very high functioning kids who have no apparent medical issues and can pretty much speak for themselves...good, good for you, but that is not the case with many on the severe end so shut your enormous pie holes and don't tell us we can't interpret what our kids may be thinking or feeling. It's so frustrating listening to these irrational people.

Sylvia

It is my opinion (and the opinion of many others) that the pharmaceutical industry and medical lobbies have championed the idea of Neurodiversity for the express goal of exonerating themselves of their role in the raging autism epidemic of the last 26 years.

What better way to absolve yourself of being guilty of a crime if no crime has occurred?

Of course every parent wants their child to be loved and accepted, and to have every opportunity in life. But to champion a disability as if it is a unique way of seeing the world is profane because it seeks to cover up and deny what happened to so many of our children. They were harmed, and now they are being denied not only their God-given destinies, they are being denied the most basic dignity of the acknowledgement of what happened to them. That is not beautiful, that is criminal.

Jhohn

https://clinicaltrials.gov/ct2/show/NCT00903214: Here's Dr. David Gorski partner of Dr.Steven Novella and his research on Riluzole aka Rilutek by Sanofi-Aventis. Performed at Barbara Ann Cancer Institute ( Wayne State University).

Sanofi-aventis has entered into various other collaboration agreements with partners including Immunogen, Coley, Wayne State University, Innogenetics and Inserm, under which sanofi-aventis may be required to make total contingent payments of approximately €31 million over the next five years.

AutismGoAway

Birgite Calhoun, You described the reaction of medical doctors so perfectly! That's exactly how they are!

AutismGoAway

Kim, Thank you for writing your post. I am not happy with these new books that will probably become the new Bible on autism. I cannot relate to the neurodiversity movement. My son is severe but I do not think he is neurologically different. He seems to think about life the same as anyone else. On the other hand, hIs behavior is very different. So when we go to a movie and he takes off his boots because they bother his senses and throws them so that they hit someone in the head two rows back is that person supposed to be accepting of this diversity? I would rather we pour money into real research so that we find a cure and his senses don't bother him anymore. I would rather he not suffer to begin with. I think if autism had not entered my life and neurodiversity was just an intellectual concept I read about in the newspaper I would be all for it. But I know a lot about autism firsthand. I think the problem is that the neurodiverse don't have the same thing as my son. They are just people who think differently. Those with severe autism have disability and physical suffering. Why can't these things that are oh so different have a different name to avoid confusion? We don't call freckles (a diversity of the skin) and melanoma (skin cancer) by the same name even though they are both found on the skin.

Joy B

The future dossier on the "neurodiverse" astroturf crowd might well go beyond the "bully" designation, and find them to mirror many other historical "fanatics"; the nuts on the front lines ready to mortify their bodies, catch falling body parts from human sacrifice, you get the picture. They usually have a niche of respectibility right up until the regime or cult collapses, unfortunately. So may it hasten.

Angus Files

To quote,Bette Davis — 'Old age ain't no place for sissies.'
Age Of Autism ain`t no place for sissies either.

Well done you 3 great again Kim.

MMR RIP

Aimee Doyle

To John Elder Robison: you said that

"I don't think anyone asks you or anyone else to like the autism that disabled your daughters. What's asked is that your daughters have the same respect and acceptance as anyone else. One of the things I have come to see is the need for adult services and living options for severely disabled autistics, because we do not have realistic options to relieve their disability."

This reminds me of what a parent once said to me (she promoted the neurodiversity schtick and had a high functioning daughter. I asked her what about those who were severely disabled. She told me "that's what group homes are for." To me that seems very dismissive and disrespectful of those who are severely impaired - and it sounds a lot like to me like it's just putting the problem away where you can't see it. This population is already pretty much invisible. And Mr. Robison, how many group homes have you visited? From my experience, very, very few group homes are more than adequate; lots are simply awful. Many times the residents are simply pharmaceutically sedated - the caregivers are poorly trained, poorly paid, and have high turnover.

I also want to raise a second point. My son, who is 26 and in the middle of the ASD spectrum, longs for a friend. He is lonely. He longs for a girlfriend. Developmentally he is maybe 8 years old, but he has enough language to tell me that. Despite the large numbers of individuals who are Asperger's and HFA, and despite their so-called "concern" for individuals lower on the spectrum, I have never found an autist, Aspie, individual with HFA (choose your term) who actually wants to spend any time with him or be his friend. At special Olympics and other events for those with disabilities, I typically see higher functioning individuals with autism ignore those who are lower functioning.

We have been told that he can't participate in certain opportunities and groups that are available to the higher functioning because he is "not able enough." At autism events we have been too, he is ignored by those higher functioning, who tend to congregate together. That doesn't sound like respect or acceptance to me. So in many ways he is shut out of the community that pretends to speak for him. At least that's been my experience - and I would love to be proven wrong. I would love him to have a friend, or a girlfriend - someone who wants to be in his life because they care for him (and is not a family member or a paid therapist) and want to be with him. Any Aspies out there want to volunteer? We live in the DC Metropolitan area.

If not, don't talk to me about how you care about those like my son and those who are more severely impaired. I guess they just end up being shut out or shut away "because we do not have realistic options to relieve their disability."

Birgit Calhoun

John Elder Robison! I am not sure how you acquired knowledge about autism, but the fact that you are interested makes it worthwhile saying something. The problem with autism is that the accompanying ailments are not simple. They go along with a symptom complex that makes detecting the cause difficult. There are all kinds of reasons why there might be epilepsy. There are all kinds of reasons for self-injurious behavior. There are all kinds of reasons why these things occur. There might or might not be a common denominator for all these symptoms. But as long as doctors do not attempt to do anything because "nothing can be done" nothing will be done. Autistic's parents have a really hard time just taking care of the child. They try to find out themselves. But as long as there is resistance by all kinds of agencies to take the parents' complaints seriously, the easy way out is to say: Nothing can be done".

Birgit Calhoun

The statement "You are not alone" when trying to comfort should never be used when it comes to autism. In fact with autism "You are alone". In the beginning of the child's life you are still hopeful. You are trying to find out what's wrong. The doctors are all eager until they find out it's autism, and that's when it hits you: You are all alone. The doctor is not interested because "Nothing can be done". Even ordinary medical conditions are not taken seriously. Why? It's because there is a prejudice that nothing can be done.

Where would we be if AIDS had been ignored in the same way?

I have experienced the indifference regarding autism. I was alone when it came to bowel disease, bone disease, kidney disease and other ailments. I was alone. We were alone. The whole family had to live with it.

Linda1

"It's frankly a mystery to me why GI and epilepsy issues seem so insoluble in some autistic people. It's also alarming that we are so ineffective in treating psychiatric disorders that accompany it."

John Robinson,
The reason why it's a mystery is because the political, scientific and medical communities have been negligent and obstructive with regard to autism epidemiology, definition, prevention, treatment, and research.

As CDC whistleblower William Thompson put it, (paraphrasing)
'the CDC has put the autism research 10 years behind and is paralyzed with anything having to do with autism'.

Please see the videos here: http://www.autismmediachannel.com/#!cdcwhistleblower/cmmo

And the documentary "Who Killed Alex Spourdalakis" tells the important story behind how our health care system not only falls short but is abusive and murderous to people with autism.

I am not saying this to insult you, because I believe that you are intelligent and well-meaning, but I think you were chosen for the IACC not because of the insight that you could contribute as an autistic man, but because they calculated that they could control your perception and input because you are an autistic man. I think they are counting on your autism to cause you to miss cues that would reveal what they have been and are up to. I suspect they similarly chose our 37 year old Surgeon General calculating that he, being young, would be the best choice to believe their narrative and carry out their agenda (not that there is anything wrong with being young, but often, of course not always, youth and naivete go together).

The push really needs to be in the area of getting rid of the corruption in the aforementioned communities and organizations that have hijacked the decision making and the funding, leaving the autism epidemic undeclared and moving through the global population like a wildfire while they make believe that they have all the time in the world to address what they have framed as a "concern".

http://www.c-span.org/video/?c4546421/rep-bill-posey-calling-investigation-cdcs-mmr-reasearch-fraud

Birgit Calhoun

It seems that the neurodiversity movement tries to downplay what mothers really go through. It's a tool to make people believe that autism is just a mild aberration. There are many versions of autism, but merely calling it diversity is denying the real hardship that exists for families living with severe autism.

more---is she f'ing kidding me?

With all due respect John Elder Robison a lot of autistic adults and their neurodiverse cult following parents don't believe in any problems with GI issues within autism or other medical issues. If anything I have found most of these people think if a child has these issues they have nothing at all to do with autism and these particular kids would be like this with or without autism. THAT is how uniformed and ignorant they are and THAT is what is dangerous to kids like Kreed, Kim's kids, Kim Oakley's child and thousands of others who have serious medical issues as well as severe autism. These kids can not speak for themselves and when the neurodiverse loud mouths spout off multiple times per day in a public forum it makes it that much harder to get others (doctor's etc.) to believe these kids are really sick and need serious help since this is the message they hear about.

Here's more from your pal John. She doesn't help these kids whatsoever. Sugar coat it any way you want. These types do not come across as just speaking for themselves or their own kids at all. Read what they write closely. The message they send is trying to convince others that all kids with autism should be viewed as "a brain that is just wired differently." Talk about living in denial. Autism is a serious neurological disorder. Not just something a little bit off with your kid!

More from Diary of A Mom from Autism Speaks blog a few years ago:

"She does not have a disease from which her body is healing. She does not have gut problems nor an overload of heavy metal in her system. She does not have anything that time in a hyperbaric oxygen chamber is going to ‘fix.’ My daughter isn’t sick.

Her brain is wired differently than the average bear. It just is. As such, her development is not linear. It’s not simply a slower journey along a prescribed path. Instead, it’s a walk down a whole different road that’s really not a line at all, but a prism – a constellation of challenges and talents that make her who she is.

I’ll say it again. My child is not sick.

She’s different.

The word “recovery” is not remotely applicable to her progress."

is she f'ing kidding me?

"I think of them when I see parents of autistic kids shutting down dialogue with autistic adults who are trying desperately to help their children."

@Patience(Eileen Nicole) Simon, I couldn't agree with you more. The above is a quote from just the other day by Jessica Wilson at A Diary Of A Mom, a passive aggressive neurodiverse bully imo, who counts Ari Neiman and all the others like him as her very dear friends. Apparently we all need to wake up and listen to the barely on the spectrum or questionable self diagnosed adults with autism as they are all knowing and if we shut them down we are just not recognizing the fact they are trying to help our children. What a complete load of SHIT to be blunt!

I'd love to know, for example, what Ari N. and M Kelter from Invisible Strings and others know about parenting autistic children like Kreed or other kids who can not write blogs and books and have such medical conditions as a result of their autism they spend more time in ER's than in front of cameras? Ari Neiman will never know what it is like to parent a child like this day in and day out and quite frankly neither will parents like Wilson. These people do not and will never speak for the majority of autistics. They are nothing but entitled bullies with giant egos.

John Stone

Kim, telling it like it is as ever. She once wrote a book called "I'm no Mother Theresa" but Mother Theresa was no Kim, and I am much more grateful for Kim. I imagine her lovely daughters are too.

Michelle B

Bravo!

Most people have NO idea how ugly ASD can make these beautiful kids feel and act.

The other day on FB some older woman was complaining (on our town's page) about a kid she saw in a local restaurant using his iPad throughout the meal--you know, his lack of manners, his awful parents, etc.

So then it begins, the endless litany of support for this kid/parents--which was good--but the comments were depressing:

"We have a son with autism, he does the same thing!" "Us too!" "My nephew has autism too!"
"iPads are lifesavers for this ASD family!"

All I could think was, when will this madness end?! How many kids?


John Elder Robison

It has always been my belief that autistics who speak out for acceptance, therapy, services, have a duty to also speak out on behalf of autistics with much greater disability. You are absolutely right that we have a population who has seizures, terrible gi issues, and lots of rage and frustration that's leading to both self injurious and aggressive behavior problems.

And it's true that we have done little to remediate those things in the past decade.

The emergent concept of neurodiversity is great in its human rights, acceptance, and respect aspects. But at the same time I agree that the presence of autistic people talking unwittingly makes those who cannot talk, and who have terrible challenges, more invisible. As much as people like me say otherwise, the broad public tends to equate "we want acceptance" to "we are not disabled," even as many neurodiversity proponents stress ongoing disability and the need for supports.

Another thing that troubles me is the attempt to separate the worst complications of autism by saying "that's the epilepsy," or "that's a co morbidity, not autism" as if that renders that persons challenge not part and parcel of autism. I am always clear that we need to study and treat it all together in context. And we have to be clear - while we may love our children, and accept their epilepsy or gut troubles for now, we should certainly strive to remediate those things.

I don't think anyone asks you or anyone else to like the autism that disabled your daughters. What's asked is that your daughters have the same respect and acceptance as anyone else. One of the things I have come to see is the need for adult services and living options for severely disabled autistics, because we do not have realistic options to relieve their disability.

Some of us have gotten better with age; others have not.

It's frankly a mystery to me why GI and epilepsy issues seem so insoluble in some autistic people. It's also alarming that we are so ineffective in treating psychiatric disorders that accompany it. The fact of suicide speaks to that.

Five years ago I felt we were on the verge of real breakthroughs. Now I see what a long slog this is turning into, and it's hard to see a speedier path ahead. That is why I am pushing in IACC for greater focus on deliverable benefits for the community.

Reader

Good for you, Kim. I support you in pulling any comments that deny the tragedy that autism is for so many! The "neurodiverse" proponents can tell those lies to mainstream media (mostly pharma subsidized) where it helps serve their purpose. The simple fact is that this problem is increasing and unaffordable, heartbreaking.

thanks Kim

Thank you for this Kim. I have been following Kreed and his journey for quite a while and we, and so many others, experience the same kind of issues.

When I see parents, doctors and certain bloggers sugar coating autism it sickens me. The people who do this clearly have no idea what severe autism is and all the medical and behavioral issues that go along with that. How I wish these people and their giant egos would stop putting out there how joyous autism can be since it does nothing to help the kids in the long run. I think it's time parents of kids on the severe end of the spectrum come out in full force to show what we deal with day in and day out. What you are doing here is wonderful. Kreed's mom, you, Kim Oakley and so many others need to be heard to counteract those such as Jessica Wilson-Diary Of A Mom, MomNos, Stimeyland and so many others who will never admit autism is a serious neurological condition but would rather put out there fairy tale images of autism. For parents and kids with severe autism it's about surviving and getting through each day, not about filling up our own egos through commenters from a blog and facebook.

Autism mom

I feel like the Neurodiversity movement undermines those on the severe end of the spectrum who struggle everyday like this young man. This is not something we should be celebrating. I get the need for self acceptance but vaccine injury is not acceptable (two different things). I will say Kreed communicates well with the iPad device- thank God for technology. Not sure if Kreed's mom realized the sun was in his eyes which I think is why he was hitting himself. The sun seemed to be irritating his eyes. Just an observation.

Diane

With great intention, someone said to me the other day, "But you're not alone. So many others have the same situation,". Does that make it easier? More acceptable that I've lost my child and whatever potential she would have had?

No, it doesn't. It makes it worse. People who do not raise a child with autism do not, can not, understand the loss. They talk about an individual with severe autism at the theatre, a child with autism who sang, a couple they know who has a child with autism, their sister in Colorado whose son has autism, But they do not know, cannot feel, what this is like.

Maurine Meleck

A blessing to you times 3. Blessings for all of us in the trenches.

Patience (Eileen Nicole) Simon

The neurodiversity movement is a form of bullying. I have been bullied for 50+ years for not being able to graciously accept autism.

Autism is a serious neurological disorder. This should be clearly understood by pediatricians, psychiatrists, and especially neurologists. Advocates of neurodiversity have now been appointed to the IACC to serve as bullies on behalf of experts trained in medicine. It is time to turn the shame and blame back on them.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)