Tag Archives: Autism Speaks

Evil Special Interest Groups – Autistic Self Advocates

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2017 Update: If you notice the language I used in 2016, maybe similar to mid 2017 where I attacked the anti-vaxxers’ anger towards this said group. While I used language as they were making autism a hip thing; the other misperception of any high functioning autistic is they are hip, cool, progressive and live in ritzy areas. That’s not a fair accusation from many of the anti autism groups. I don’t know if I quoted anti vaxxers or the anti vaxxers quoted me, but since then their social media presense talks about all other disabilities, employment and race. Where’s the autism?

They aren’t speaking for me…

Happy New Year, hoping people enjoyed the holiday weekend (if that holiday still exists.)

I don’t like special interest groups. I don’t care if its right wing, left wing, middle wing, whatever. There are two types of special interest groups, one is radical and the other one is for true minorities. Sadly there is so many of the former that exists that are often compared to as “racial arsonists” like a Jessie Jackson, or an Al Sharpton. Sure there is racism, but overall I’d say 98% of America is not as “racist” as those two men want to dismiss the stereotypical old white men agenda.

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The Most Effective Human Rights Movement that Never Happened

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The alleged rise of autism and the rise of interconnected devices such as personal computers and TCP/IP connectivity (also known as the “Internet”) as well as applications such as the World Wide Web, social media applications like Facebook, Twitter, etc. could had one of the most progressive social movements in history.

But what happened instead? Autism or developmental disorders (as we call it here in my state)  was “no different no less” than the “racial arsonists” of the 1960s, 1990s or even sometimes bordering on the Internet equivalent of the “Weather Underground” (and no I’m not talking about what was once a geeky weather related site that just got sold out to Big Blue.) They’ll blow people up that don’t agree to their narrative and like the Weather Underground they probably would say “that was just ‘property damage'”.

It’s one thing to “make noise”, but attacking others that don’t agree with you defeats your purpose of advocacy.

Why is advocacy supposed to be a Boston styled, one way street? I thought progress made streets wide like California where you can have two way traffic, relationships and question people. So if they are all about progress, then why are they stuck in the past with an old metaphor? Wasn’t the Internet supposed to integrate different “internets” so they all could talk the same way – and unite what was once iron-clad mini fridge mainframes, later to plastic clad PCs and glass clad iPhones?

I’m for justice, or “social justice” but not entirely. I’m an effective communicator, and one of the worst things to publicly say is to use vague language, buzzwords that 90% of America can’t understand and push your politics against other adults who have their own opinions.

And people think I still have social skills problems. – Look at these silly “Aspies”!

Don’t use “we”, because you may not be speaking for everyone!

Try saying that to a family that has an autistic that runs away, bites themselves and has constant meltdowns. Have any of these Aspergers types know any lower functioning autistic? Oh wait I’m an ableist!

I agree with the top part, but the last sentence is like X-Men where the Mutants say “don’t be afraid” and show off their “talents” in an arrogant attitude without fear. Card-carrying autistics rarely go places. Let me tell you, if I did what these people did, I’d have an even larger criminal record! Put this into perspective, if I was a full time advocate, the DRC dude – the UNH party boy there, would’ve hated me even more.

In short, if you want to be well liked, keep your autism showoffs to yourself!

Want to know why I’ve been complemented for great writing? It’s because I use boldface to enhance a message. Using improper capitalization automatically deducts points especially if you have strong English skills. “Autistic Voices” should not be capitalized. Boldface would work just fine in all lower caps.

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What I fear is the autism advocates are as passive aggressive as Bob Wright’s Autism Speaks is passive agressive against autistics. I hate to speak bluntly, but the problem is say this disorder was a cancer, they believe cancer would be a gift that should not be cured. Why? Because these autism advocates do not attack Autism Speaks in the same way as your’s truly pointed out on a number of times to the point I still call it an “exclusive.” They don’t understand the power of the Wrights as they want you to believe that these are just normal country club couples creating a feel-me-good organization, when in fact the man had significant power to the mainstream media/MSM for decades. But since they listen to NPR or watch AJA – they never watched NBC, CNBC or any of the other NBCU properties or even have a clue what WPIX is (referring to that documentary.) By curing cancer, you have to get to the root of the disease as much as possible, by attacking Autism Speaks without getting to the root cause by going the “general” or “generic” route, you’re not going to get much places in an outcome where people will understand. Therefore adults who are “normal” or parents will not believe you. Positivity doesn’t get you places in “the system”, to use the cliche “if it bleeds it leads.” 

As I am a Lego (and Lego Movie) Fanboy, I can’t help to quote the “EVERYT-HING IS AW-E-SOOOMM-EEE” approach to autism advocacy is in fact hurting their cause. In some cases, they may hate Steve Jobs (as many HFAs are Google/Linux fanboys), but they are doing his same practice of using reality distortion field – believing the whole world is rosey to “acceptance” – despite the realities of continued hatred by the professional class, heads of state agencies, school district management, and ineffective training. You’ll never hear the direct attack on the subject or specific individuals at all.

They are just like every other liberal group of throwing some vague wording without solid facts.

Since becoming an adult, I’ve been demonized, and sadly I am a victim of an oppressive special needs system. Being happy, and “gay” (since afterall they push an autism rainbow and eliminate the puzzle) won’t bring you places. It’s like you won a battle you didn’t deserve to win.

This is why I am unaffiliated to the groups. And I’m autistic thank you very much.

Police, Autism Speaks, and Anti-Autism Agendas

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This blog, I found from a conversation I had with someone on Twitter who was offended by an earlier post on one word I used to describe a significant advocate. (Of which I standby, because people use words to describe things and if they’re unsure, well what other words can they describe…lighten up.)

I want to post something positive from this writer. On the blog, a post last month described their frustrations against a walk at the National Mall in D.C.  As with many of the autistic advocates, they have pushed the same narrative over and over “Autism Speaks doesn’t allow anyone with autism to speak and they let only 4% of the budget to go to families and/or individuals”. This makes people like me sleepy of hearing the same thing over and over and over.

However, these individuals were targeted by police. Let’s quote a paragraph on this issue:

The people who donate to Autism Speaks, by and large, don’t know any of this. I spent the majority of the protest talking to people and handing out informational flyers. Almost all of the people I interacted with were shocked at how poorly Autism Speaks serves autistic people. Others were happy to learn why some people don’t like the organization, as they had been curious. A few people brushed us off entirely. We didn’t press them. Most of our group stood silently, occasionally making friendly gestures.

here’s what gets interesting:

Then, the rally organizers called the police. I don’t know what the Autism Speaks organizers told the officers about us. Given the amount of hostility we faced, it probably wasn’t good. 3 armed police officers were sent to deal with 6 people holding damp cardboard signs. They told us to move to a less visible spot across the street. After a quick discussion with Rachel Best, the leader of the Autistic Self Advocacy Network DC chapter, we decided to comply with the officers’ request. We tried to move to a different location with better visibility. We were told to move again. The second time, we were told that if they saw us again, they would arrest us.

Now lastly, this is how not to advocate:

 This was not my first protest. This was, however, different from any other protest I’ve been to. When I marched with Black Lives Matter and Slutwalk, there were hundreds of us. We filled the streets. We obstructed traffic. I felt powerful. I felt like I was making a difference. Being one of a handful of protesters standing against an event that attracted thousands was demoralizing. I was happy to spend time with other Autistic people, but I couldn’t help feeling some despair. When there are so many of them and so few of us, how can we change anything?

You cannot just block traffic, and act like a brat and be above the rules. What this advocate did in the first two paragraphs are within reason, and why did the police question or threaten arrests? This is one side of a story, there maybe another side.

I wanted to post this because I want to prove the Merrimack, NH Police Department and the Merrrimack, NH Town Council that my advocacy against Autism Speaks (Not “ANTI-Autism Awareness”) was within reason – and I am not one of those people cited above. I don’t care if you are black, a lesbian, severely autistic, suffer with CP, you must follow the rules, and always listen to the cops. If you want to question them, you do it after the fact. Social media and email in my case made my problem worse. In my situation, I was on town right of way, on the sidewalk, but I think what bothered the Chief of Police was I had “a camera mounted on a tripod” that caused him to question me (and insult my town – again with a number of developmentally disabled people) within an hour by Retweeting (and perhaps posting a link on Facebook) to Light it Up Blue. And all emails I’ve sent were professional and didn’t contain threats or inappropriate languages.

If you want to be taken seriously, you must follow what these individuals or what I did. Stay on point, change the narrative at times, and understand that some people may still believe in Autism Speaks and sadly you can’t change their views. All you have to do is move on and hope to find other people who share the same thoughts.

The Idiocy of Autism Advocates (and what they are missing)

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This was originally posted on my personal/professional blog. It has been adapted for the use on The Hopeless Autistic. Edited on November 11th.

Before I get mislabeled in the comments, I just want to put some level of scrutiny outside the 603 area code in terms of advocacy and autism.

You’ve heard about the anger of the advocates on Autism Speaks already and what they have done. I want to take this on another level and question why they act so arrogantly that there is nothing wrong with them and why mitigating their odd behaviors (different from a full fledged “cure”) may not be a bad idea.

I do blame the autistic community themselves also to create firey riots, but they do it in the packetwaves and in the ether – known as the Web.

I’ve never heard of “#ActuallyAutistic” until the April Autism Acceptance Month, and to this day I have no idea what the hell does that mean. Did someone say they weren’t autistic? Why are you wasting your time and resources to claim you’re really autistic? Because it sounds like you had an identity theft of your emotional and social makeup so you need to basically prove yourself. But if you really have to prove yourself, then why is it so rosey? Then to counter Autism Speaks’ blue color, they suggested to “walk in red”… whatever that means… Red can come off as many as a negative color, by the way.

Sorry autism can’t be glory all day long, nor can it be all gloomy ether. However advocacy should only be done when its the last resort (in my case I’ve been written up by my local police department, telling people to not Light it Up Blue in April for that same dude to retweet LIUB within an hour after the encounter. I for a lack of a better word “played the autism card” when I knew I was vulnerable.) More details on that subject by searching on the site.

To me that’s where advocacy should be, honest, serious, objective, fair (without attacking – like threatenings one’s ID, life or property to themselves or to others) and do it only when there is a need to do so. And not be so angry amongst a group, and be rational. Most of the super high functioning autistics are beyond rational that maybe they should be institutionalized – not because they’re autistic, but being radical moonbat lefists. But I have PDD-NOS so I must be retarded and I’m too simpleton.

Advocacy should be like WSVN’s news format

If it bleeds, it leads.

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Positivity in terms of addressing special needs have really gone no where, and no listens when someone that appears to be able-bodied but can’t explain why they need assistance. Focusing on the negatives goes as far back as the dawn of time.

The other thing that irritates me is the hyper political nature of the super high functioning autistics. They’ll claim Autism Speaks are bullies, but why are they so insistent to continue a couple years old “Twitter bomb” known as #BoycottAutismSpeaks, which the brats will spam and harass people and organizations who follow Autism Speaks on Twitter. If they hate them so much as if they are dead, then why are they keep brining up the dead? It’s no dramatic than some daytime soap opera on the networks (the few that are still on.)

And also, if you have Aspergers like autism, I’m not saying you’re not autistic, the problem is do you know the real spectrum also includes  the ones that can’t speak for themselves? Do you also know that being all happy about your autism will offend parents of non verbal, and very “slow” adult children? And people like me who are too stupid to go to college? (Lets not bring up the ex friend from Lowell who calls anyone outside of Aspeger’s “retards.”)

I see a lot of advocacy and noise against the big cities, but never the little towns. In NH, the Council on ASD has a seat open for the Autistic Self Advocacy Network, but there is no representation, Why? Because these people come off as extreme liberals, too-cool-for little ol NH, they think its so far away from Boston, that there is no need to represent. They also want their trains and buses and they want walkable cities (they are too cool to drive) and they loathe republicans. (I’m not saying Republicans are perfect, but children die in Boston under excessive government control that these “Aspies” pray upon as their religion.)

While I am on ASAN, they’ll attack Autism Speaks for not allowing autistics to speak, but ASAN will not allow anyone other than an autistic to speak on the issue (so paras, doctors, alleged “experts” are basically shut up) its an exclusive club and it’s racist – or dare I say ableist – in its own way. So they complain about Autism Speaks to not allow autistics to speak, but they won’t let anyone outside of an autistic disorder to work for them or have outside perspectives?

Double Standards perhaps?

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My ideal autism organization should advocate people both genders (transgendered is not appropriate for the general autism population for representation), early childhood to elderly, and focus on a wide variety of problems and hold everyone accountable, not just the evil ol Republicans and Autism Speaks.

Let’s see if anyone will expose Jim Watkins and Lauren Thierry to the point they can’t be in broadcast journalism ever again. But the problem is Aspergers or Super High Functioning types hate local commercial TV, so they have no idea what those two people were behind (the Autism Everyday film) and they don’t care about bridges, so they won’t mention the largest throfare in the East Coast, so don’t expect them to mention the George Washington Bridge by name.

The other problem is high functioning autistics are not innovative and they are very repetitive, so its not a total surprise they do the “Autism Speaks won’t allow autistics to speak and Autism Speaks produced a film where mother talked about driving off a bridge” instead of saying “Autism Speaks is lead by a former, clueless media exec who lacks strong communication skills and allowed a film to be produced by couple big market journalists who were well liked in their respective markets and allowed barbaric statements to be said.” Most people who follow business or worked in the media or communications business would know Bob Wright and many people in Boston, Philadelphia or New York who lived there for the time Watkins (and Thierry) worked at such stations would understand. Maybe there should be more research and teach the simple people something or people they can relate to (like a former host of Boston’s Evening Magazine)?

I am really giving the advocacy community the recipe without the patent fees. I’m giving you so many ideas but you choose to be stubborn and attack, attack and attack and force everyone upon will that you must like autistics because you’re special and you think everyone will like you. And in fact your lack of communication skills – I mean effective communication, will make your credibility more questionable.

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On Autism Speaks

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What I am posting I hope doesn’t become a heated topic.

I’d love for people to “listen” to any autistic, high functioning, low function moderate functioning etc. Leave your politics at the door and see how I stand for autism without any help of any “advocacy” organizations.

I do not believe in Autism Speaks, but I also believe there are other views out there and those people should have a right. I am talking about individuals, I am talking about teachers, I am talking about support professionals and families as well. And I am not scoping this to just one side of the autism spectrum or the other side. The problem is its very political and there is money, power and political capital that is in stake. This would make AIDS and Cancer advocacy groups jealous! 

My view on Autism Speaks is that they do not speak for all or any autistics at all. I am not saying the obviously high functioning groups that called them out on that, I’m also talking about people who I know who aren’t as verbal and not as bright as the higher functioning.  They are pouring money to find a “cure” and I do not think autism will be cured. They’ve said that with cancer.

Autism is short for the Autism Spectrum Disorder, which is a wide varieties of inability and abilities, just like every other developmental disorder.  ASD can be dually diagnosed in medical conditions like Cerebral Palsy and psychological disorders like depression, bipolar, etc. Whether it’s right or not, that’s not today’s discussion.

Autism Speaks markets the disorder as a tragic burdon of families impacted with autism, according to the advocacy groups. This is half true; the stressors of families trying to seek help desperately and often causes things like divorce to occur. Autism Speaks was founded by the former NBC Universal president, Bob Wright (who also Jack Welch’s right hand man for the TV division of General Electric and was the co-founder of CNBC and MSNBC) who started up this organization likely as a good intention as one of his grandsons was diagnosed with the disorder.

Since the startup, the organization had major support by Wright’s former employer, the other major networks, the Federal government and most recently the Catholic Church and the big Silicon Valley companies. To me its celebrating a “cause” they themselves have no idea what the disorder is nor would they want to live with them. (just my assumption)

Autism Speaks also had fingerprints on a documentary produced by some prominent big market journalists, who let the clip of a whiney mother with a smirk saying  that she would drive off a bridge – the George Washington Bridge with her autistic daughter running around in the background. Um, how can you a) drive off such bridge without driving a big rig truck and b) say this in front of your kid you think she’s stupid? (See below from a recent visit to the City at the Top of the Rock)

DSC_0145

These stereotypes do not help the matters if someone like me wants to be in the community and have a reasonable level of tolerance or acceptance (such as having a “real job” in the real world without being threatened that I’m going to do the “wrong thing”.)  The power of Autism Speaks and their inappropriate messaging could be messing the minds of paraprofessionals, teachers, adult service professionals, caretakers and ignorant leaders on special needs.  Sadly no one wants to say that, its easier to say “tragic burdons” and to demonize autism.

The reason why I avoid any advocacy groups, and remain independent as just “an individual with autism” or “an autistic”  is that autism advocacy groups are no different than the liberal special interest groups. Some of their politics often are mixed into their autism views. I really do not care about gay marriage or “income equality” or other liberal view points. If you are going to talk about autism, to steal a phrase from my speech therapist “Stick to the Topic.” Another problem is they think they shouldn’t be cured at all – even if they have clear problems with social skills. They think they are above everyone else and in fact their “special interest” can come back to bite the cause as a whole. (I am referring to “twitter bombs” and the “Boycott Autism Speaks” movements and jamming up the social media pages forcing account owners to stop following Autism Speaks. These types of actions in the packet-world is no different than causing arson in Baltimore or Ferguson)

I’ve never had a brother like (not even a true “best friend” figure in my life, so I am so used to people with differing views so when there is an agreement, it throws me off guard. I wished this was the case for all the “autistics” that speak for their group. While I may be stereotyping, the ones who weren’t born with it and got diagnosed when they were 6 after noticing signs of abnormal social behavior very likely have no idea what people like me gone through. I was non verbal till I was almost 5, and I was 50x slower against my normal group of peers. (I refuse to use the word nerotypical or NT, since this site is IT focused, and I use that to describe Microsoft’s enterprise offerings. In fact its a registered trademark of the late Nortel)

With that being said, I’ve always meshed well with lower functioning people. They are nice groups of people. How can I know via the packetwaves that the Aspergers types have any understanding of people well below their IQ, social background and pay grades?

These groups glorify autism instead of having someone who can talk say that he lived a tragic life on the autism spectrum disorder. This actually is against their “group think” mentality, you must be positive, if not – then screw you!

The said groups also believe in self advocacy. No one else should talk about autism other than the ones who have it. Humm, hows that not racism or discrimination? I am offended that Autism Speaks doesn’t have anyone knowingly on the spectrum on their board, but having a bunch of happy spoiled rotten brats with Aspergers running a special interest group is offensive to the teachers, paraprofessionals, and or other leaders.

Two wrongs don’t make it a right.

If I am the only one that will speak about autism in an objective, fair, honest and non glamorous way – then so be it!

Change My Diet – Feel Better?

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It is not abnormal for autistics of all ends, to ether be overweight due to being on medication or having a narrow scope of foods (soft textures loaded with fat or sugary content) causing many to have a larger waistline.

Some of these diets could be eating away from Vitamin D, which is the nutrient for energy. I do walk often (well not this year after the 6 month heatwave and other issues with community officials), and where I live, the neighborhood is very open so the 360 days or so is often sunny, so how could I not be getting Vitamin D? The diet could be the culprit?

But why should I change my diet? How can I be magically happy? I do not feel that the context of this blog would go away, and I feel its not a dillusion anymore.

The problem is in order for me to feel better, the people around me need to be healthy and happy, and a system that isn’t oppressive and regressive. Autism Speaks turns 10 this month and yet they caused their own autism regression in awareness. Autism Speaks has made the disorder like a disease (which developmental disorders had existed before 2005. For gawd sake’s alive the Autism Society of America was around for another 40 years before and yet they never encouraged double-murder suicide.

Change my diet and the state will seem to be more accommodating for services?  Change my lemonaid or soda intake and see people wanting work with people like me?

I really hate to say this, but I do fear what I’ve been seeing in this year alone in the State of New Hampshire is so tragic that even I make myself happy, I’d still be struggling to be fully happy due to the ignorance of leaders in our state who clearly are waking up at 5:00am to create unneeded politics and unneeded drama on the autism spectrum disorder. Who hurts? The individuals themselves.