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How Autistics Could Help Their Tribe

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NOTE: Thanks for the kind emails. A few of you have asked about Dan's memorial service. Here are the details.  You are cordially invited, Saturday, March 18 at 2:00pm.  Kim

Fairfax Memorial Funeral Home
9902 Braddock Road
Fairfax, VAUS22032

By Kim Stagliano

2017 hasn't been an easy year.  We lost Dan O in January and my Dad passed away 12 days ago at the age of 94. Dan and my Dad were the two men who called me a unique nickname - "Kimbo." Dan didn't know my Dad called me that - he came up with it himself. Not Kimba. Not Kimmy. Not OhMyGoshJustKeepTheSiteRunning. Kimbo.  Even when my Dad could no longer hear well enough to speak to me on the phone, my Mom would say, "Richard, it's Kim on the phone," and he'd yell from across the room, "Hello, Kimbo! How are you!"   I miss Dan every single day.  And now, I'll miss my Dad too. But these are the turns that life takes, and I accept them.

Speaking of acceptance.  I posted an important WhiteHouse.gov petition on our Facebook page last week, and here as well.  Take Action to End the Autism Epidemic and Implement Comprehensive Reforms of Vaccine Safety Policies It calls for an overhaul of vaccine safety and to end the autism epidemic.  Well, this brought out two strident commenters on our page.  Sometimes we ignore these Facebook comments, Adriana, Cathy and I.  We don't moderate FB too much - we haven't had to, most comments are from people like you and me who are just trying to get through the day taking care of their loved ones with autism.  Two autistic commenters came in guns and assumptions blazing.  I chose to respond. 

We're less than a month away from the silly season of celebrating autism. April Fools Day lasts all month long for us.  Autism is no joke.

Melvin wrote: "Yep better call a national emergency to stop people like me being born, thanks for that."



I responded:  "Oh Melvin not at all. We are autism advocates. We're so sorry vaccines caused your autism. We're trying to make sure every baby is born to parents who can make healthcare choices for their babies and that every choice has safety."

Mary Kay wrote: "Adults with Autism don't want to be "ended." And here's where we break with you - we think you should be attacking Trump's K-12 schools disability protection waivers aimed at stopping IEPs and accommodations. Or, we adults with autism could simply marry each other, have lots of autistic kids, and demand the Country, though it stay united, be spilt [sic] in half with half where the autistic people live and half where the neurotypicals must go, just like tribal resevations. [sic]"

Melvin assumed we want to "stop people like him from being born." No. We want to stop vaccine injury.  Mary Kay stridently told us we should be petitioning for education (not an unwise choice) and she suggested that people with autism should segregate into their own tribe. 

My daughters ARE segregated by their autism. Special school programming. Special day programs. Just for autism. There are autism days at parks.  Movies. Malls.  Why? Because autism behavior can be so severe and so unlike any other diagnosis that it's just plain different.  People with autism often can not live in traditional group homes - their behaviors prevent that.  There is already segregation, Mary. Born out of the severity of the diagnosis. It's not pretty.

But Mary also got me thinking.  This is why it's important to read differing points of view. 

I answered her as follows:  "Thanks Mary Kay. I would strongly suggest that autistic adults like you devote your careers lives etc to caring for the 1 in 68 as we their parents age. We'll need your help. And who better as you point out, to understand their self injurious behaviors, inability to sleep, stomach issues, lack of speech, etc? Yes, take care of your tribe. Open group homes for and by autistics. Create jobs. Become job coaches. We NT parents would welcome your expertise."

I'll sit tight for my answer.

Kim Stagliano is Managing Editor for Age of Autism.

Comments

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Denise Anderstrom Douglass

Ha, ha, Kim! Keep your chin up! I feel Dan is watching over us. You Aspergers people please stop acting like you know what our families go through. Many of us live with the knowledge that even our nearest and dearest, immediate family members, siblings, cousins, aunts and uncles are in denial of what is going on with our daily lives. Meanwhile, the severe reality of regressive autism is aging out and there is no answer, there is no future after special ed high school "graduation" -- to what? Yet our denialist near and dear will likely be the first to "be shocked" when the "problem child" is finally put into some group home, when more and more news items contain traces of the despair every middle aged parent and aged grandparent fears most: the day we "can't take him down" anymore.

ATSC

The problem with the internet is that we don't know anything about the people who write comments or claim to be autistic. I remember trying to argue with someone on YouTube about vaccines causing autism until I found out he was sixteen and had just been diagnosed with Aspergers. How can parents of moderately or severely affected children, some now adults, convey to mildly affected teenagers the seriousness of autism when they are learning online that it is a neurological difference that comes with gifts?


Mary Kay says, "we adults with autism could simply marry each other, have lots of autistic kids"

One thing's for sure, Mary Kay and Melvin won't be marrying people with severe or moderate autism, and they would still be segregated because, unlike them, they have problems with language and communication, and in their twenties, generally speaking, they're still fixated on children's TV programmes and take their soft toys to bed with them. They are certainly not online discussing their autism.

https://www.psychologytoday.com/blog/inspectrum/201512/making-severe-autism-visible
Making Severe Autism Visible by Amy Lutz

4Bobby

So sorry for your loss.

rtp

the response to the (mostly probably fake) autism advocates who pretend to be offended by saying we want less autism is to say:

"Well if it is offensive to autistic people to prevent autism then it must also be offensive to people with paralysis to try and prevent polio - ergo, anybody who advocates the use of the polio vaccine is an evil bigot who hates the disabled."

You can then follow it up with:

"Of course, the polio vaccine didn't actually bring about a reduction in paralysis at any rate, but vaccine advocates believe it did so that makes them evil bigots."

Bayareamom

Kim,

I am so sorry to hear about the loss of your father (he sounds like he was a terrific dad).

This has been a really rough last year, with the loss of Dan, Kim's dad - and unfortunately, I lost my sister last October. Losing a loved one is never easy, no matter at what age. I loved your response as well. Even though my family does not suffer as yours re autism, I can so relate to you on many levels.

Again, heartfelt condolences to those of whom have lost dear loved ones this past year. It's been a very rough year, indeed.

- Kim

Jake Crosby

Wish I could make Dan's service; I will be there in spirit.

As for the people you are engaging Kim - the truth is that they are a waste of space, oxygen, bandwidth and possibly even the SSDI which there is already too little of to even support the children who are actually deserving of it. These parasites are probably not autistic and just say they are, like the trannies who put on dresses and pretend to be women. Of course, that doesn't excuse the few people among them that are legitimately on the spectrum. If anything, it makes them the most culpable because they're putting identity politics above the needs of actual autists. That makes them the lowest common denominator (yes, I'm referring to Ari Ne'eman: nay-man to the needs of the autistic man/woman).

Jsp

Kim. I'm sorry for the loss of you father and Dan. Both live on in your work and advocacy!! I know my wife and I rely constantly on our family to care and love our autistic daughter.

Angus Files

Sorry to read of your Dads passing away Kim- two newer brighter stars up in the night sky looking over us these days.

Aimee Doyle

@Mike - a wonderful and thoughtful response to my post.

Too often those who are severely impaired are isolated...first in their families and later in group homes. This is particularly true of those who have difficulties in communicating. I understand there are non-verbal individuals with autism who communicate incredibly well by computer or other means and they have friends and are embraced by the neurodiversity community. But I think those individuals are in the minority. Communication ability seems to be so key to developing real relationships.

My son is in a weird middle ground - functional enough to want deeply desire friends and relationships - but not capable of initiating or sustaining them by himself.

Best to you and your family.

Elsie Russell

So very sorry for your loss, Kim!

Greg

Interestingly, over at Matt Carey's LB/RB, Matt was discussing a wonderful dinner outing he had with his autistic son, and how accepting and welcoming the patrons were of his son. He expressed his hope that society in general will show the same acceptance, and without acceptance we will have hate and resentment that leads to infanticide, such as with Alex S. I commented, asking him if acceptance involves 'normalizing' autism to the point that we no longer seek prevention. He answered, asking if I desire his son doesn't exist. I countered with this:

Matt, you said by wanting to prevent autism, I don’t want your kid to exist?

I’ll be perfectly clear Matt. I want your kid to not only exist, but to thrive. This means not saddled with a disability that will render him/her with a 33% chance of being non-verbal, a 40% chance of being mentally retarded (or ‘intellectually challenged’ if you prefer), and a 85% chance of growing into an adult, unemployed, and entirely dependent on his aging folks to look after him/her. And, yes Matt, I want you and your child to comfortably walk into a restaurant, without you or your child praying that you will sit beside understanding customers that won’t treat your child with scorn.

Matt, this is what I want for all future Matt jrs, and children for that matter. If this makes me a satantic abliest, then guilty as charged, and go ahead and hook me up with my horns and pitchfork.

Jeannette Bishop

I'm sorry to hear you've lost your father recently, Kim, on top of missing Dan.

To believers in ND somehow being written in the stars or the sacred genes or maybe something else, we are IMO (in the autism is environmental or environmentally mediated viewpoints) asking just as deeply for respect of diversity, individuality in the way an exposure will impact the outcome of someone's life, their ability to interact with their brothers and sisters on this planet, to even fundamentality care for themselves in too many cases.

Assuming autism is genetic or epigenetic (I'm not personally sure genes have anything to do with it), I also believe then that we are more fundamentally trying to stop the "neurodiversity" of "autism" from being ended, as vaccine mandates of an ever expanding market and other exposures impacting neurological development would likely accelerate an unnatural deselection of "autism genes" from our gene pool.

I want to ask after much reflection on a something-does-not-add-up-right-here feeling, where is the resistance to understanding or accepting the possibility of environmental exposures playing a role in an autism outcome coming from? Does that resistance indicate a sense that if someone developed autism because of an exposure, it would somehow delegitimize an individual's claim to respect for their resulting neurodiversity? I don't think it does, but sometimes it feels like those underlying the ND movement (however sincere in the intended claims by those underlying it are) do. Do people in the ND movement see people with acknowledged vaccine injury, such as possibly a paralyzing case of transverse myelitis, as lesser human beings? Doubtful for the most part, though maybe for some promoting the movement (that IMO results in vocally or tacitly supporting or at the very least accommodating the forced poisoning of oneself and one's offspring) that is their underlying ideology.

Anne McElroy Dachel

Kim,

I too cringe when I think ahead to April. Blue lights around the world make it clear that autism can't be ignored. There'll be walks and fundraisers. We'll be told to celebrate something no one can reasonably explain. Tired old conflicting claims will make the news. We'll hear that all the autism is just "better diagnosing" of a genetic disorder that's always been around. No need to panic.

We'll see thirty second news clips showing typical looking kids happily interacting with their speech therapist and be told THIS IS AUTISM. It's easy to think that autism's always been here; we just called it something else. What we won't see is the ugly side of autism. Absent will be the severely affected kids with self-abusive behaviors, the young adults rocking side to side and still in diapers, the ones with seizure disorder and those with violent outbursts. We won't hear about concomitant health issues like bowel disease. Nothing will be said about the children who were typically developing until for some unknown reason, they lost learned skills and made a dramatic descent into the mysterious world of autism. No one will ask why we're always talking about CHILDREN and YOUNG ADULTS when the subject of autism comes up. We'll see the charming five and seven year olds on the spectrum, while no one asks where all the fifty and seventy years with autism are.

After two decades of officials shaking their collective heads over autism, no one seriously asks why anymore. Autism is merely a curiosity to those in charge of health care. If the rate happens to increase, it will mean nothing. Each and every time it's happened in the last twenty years, there's always been someone from the Centers for Disease Control and Prevention right there to assure us that no one can say for sure if THIS increase represents a true increase from the LAST increase, which the media dutifully reports as THERE HAS NEVER BEEN ANY REAL INCREASE IN AUTISM.

April is there to condition us to accept more and more kids who can’t speak, can't function in a regular classroom without assistance, and who will be depend on social services to some extent for the rest of their lives. We're desperately trying to make the world "autism-friendly" by adding accommodations everywhere and providing autism training for everyone dealing with the public.

Autism is here to stay. It's always going to be a puzzle with no known cause, cure, or prevention. Millions will continue to be spent on research that never reaches any conclusion. Despite all the negative aspects of autism, it'll never be an official CRISIS. "Serious public health concern" is the strongest language any official has ever used when talking about autism.

April is just around the corner. Same old, same old.

Grace Green

Kim, I think it's great that you reached out to these people and told them you care about their welfare, and that you believe their autism was caused by vaccines. We need to try to get these Aspies on side, but it won't be easy as they've been brainwashed by the pro-vaxxers. I think it's quite scary to realize that you're not just made different, but have a brain injury, and could have had a very different life. When I was at school in the 60s, long before I knew I had autism, I befriended a number of children on separate occasions who spent a few weeks at our school before being removed to other schools. I now recognize them as having been autistic. I felt I had more in common with them than my 'NT' friends. I keep trying to build bridges between the two groups. To my friends here on AofA, you succeeded in convincing me, so don't give up!

Sun~Rose

I'm sorry Kim! I was so taken by your resonse for her, I forgot the most important part. I'm so sorry for the loss of your Dad, and grateful You had him so long.

Love,
Sun~Rose

Sun~Rose

Great response Kim!

annie

My deepest condolences for the loss of your father. Thank you so very much for keeping the site running!

Mike

Aimee, I'm so sorry to hear that. As someone with Asperger's, I know firsthand how much this spectrum seems like a caste system. I'm with you- I wish we who are more high functioning could treat this journey we're on more like a mentoring program to those who are more severely affected.

I have a cousin who is more severe than I am who I spent a lot of time with as a child, so I have a slightly different perspective. But I do believe in kindness for all, especially for those who are not as blessed as I am. I just wish others in the community felt the same way.

My best to you and your son.

Aimee Doyle

Interesting that for all their professing to "care" about everyone on the spectrum, I have yet to meet a higher functioning individual with autism who wants to spend any real time with my son or any individual with autism who is profoundly impaired. Every human being needs friendship, relationships, and community - I had hoped my son would find one within the neurodiversity movement. I find it heartbreaking that almost everyone in is life is someone who is either family or paid to be there.

The DC area has an active Aspergers/HFA Community. My son has been determined to be "not high functioning enough" for most events for individuals with HFA/Asperger's. And when we have attended such events (he can't go by himself) has been ignored.

I'd be interested in hearing from anyone who has successfully developed relationships for their profoundly impaired kids or young adults...who has created genuine friendships (not a one-off "hi") with those in the neurodiversity community.

Tom

I suppose it's reasonable to expect a 'NIMBY' type of response, whether because our 'sect' doesn't line up with theirs, or more likely, because real life action takes the kind of effort and courage which exceeds what is typically put forth from behind a keyboard.

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