Autism Speaks: Do they speak for us?

Hey guys, it’s been awhile. Wrote this for my school newspaper.

What do you think?

Autism Speaks is an international charity organization that works to promote awareness about autism. After looking at the finances and graphs that Autism Speaks published, I have an issue. An issue with a lot of charities I have noticed. Why are charities for profit? Why is only 20 percent of the funds that Autism Speaks has used for support programs and 49 percent used for awareness and acceptance?

I am all for autism awareness and acceptance as has been evident in my past writings for the Snapper, but I do not agree with how Autism Speaks goes about promoting acceptance. My understanding of their examples that they have on their website is exploitative. I do not want to defame them, but I believe that autism acceptance should be about autistic people. There are two people that are on the board that are autistic. There are 26 people on the board. There should be a lot more representation for autistic people.

Also, I know I will be called out for saying autistic people over people with autism, but I want to make something clear: I am autistic and if I choose to say I am an autistic person then let me. Do not tell me how I should identify, you are not living the life of an autistic person and honestly, a neurotypical person has no place saying what a autistic person should describe themselves as.

According to the Autism Self Advocacy Network (ASAN), “Autism Speaks uses its platform and advertising budget to portray autism and autistic people as mysterious and frightening. Their fundraising tactics increase stigma and create barriers to the inclusion of autistic people in our communities.”

As an autistic person, I think my opinion on what is good for autistic people should be my own. There are a lot of people saying what is good for me and there is no backing or proof for their claims. Autism Speaks does not understand my autism and I doubt they ever will. I think that they want a cure to autism; like autism is a serious, debilitating disorder. It is not, there is a lot of variety on the spectrum and I dislike that people not on the spectrum want to decide my rights.

Autism is hard enough, and I do not need being told what is best for me. It is a spectrum disorder and there is a lot of differences for us autistic people. The walks are great, but what do they accomplish except to make the people walking feel good about themselves? I never been to a walk and honestly, I do not want to go to a Walk.

Autism Speaks has a message that says this to me: Autistic people do not have the right to decide for themselves. We do not have the capacity to make those decisions for ourselves and we are not capable either. It is infuriating and it makes me upset. According to Autism Self Advocacy Network (ASAN), “We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!”

Autism Speaks mission is less appealing, “Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.” This quote sounds great, but it is not true. The money that Autism Speaks receive is from used mainly for lobbying. According to the Autism Speaks 990 Non-Profit Tax Exemption Form, 42 percent of the money is used for awareness and lobbying. 32 percent is used for research. Less than two percent is used for Family services. The numbers above are incorrect and were skewed to make Autism Speaks look better.

Two percent used to help those families affected by autism. 42 used to lobby congress. Then there is the 16 percent used to fund the events for fundraising and 32 goes towards research. According to ASAN, “Only 1.6% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Autism Speaks spends 10x as much—16%—on fundraising. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world: some salaries exceed $500,000 a year.”

This is not acceptable at all and it needs to be put out there. There are other groups that are doing good out there. Such as ASAN and many others.

People first versus Autistic First

Here are the options, an autistic man or a man with autism. It has been a while since I looked at people first language and it has changed greatly in the autistic community. I am an advocate for autistic people now. I used to be an advocate for people with autism. What has changed though? The autistic people are growing up and we are able to talk to one another now. An opinion was presented to me that an autistic person is exactly that. A person with autism is also the same thing, but the context changes. Completely disregarding the autism.

I admit this is a 180 turn for me, but hear me out. This opinion comes from a place of identity. How I identify myself and how I want others to identify me. I still do not like autistic being used as a slur, but I now do not mind being called an autistic person. There is now a social construct that has been erected by autistic people. The autistic community does not mind having autism and will fight to preserve their identity as someone with autism. We have turned what used to be a medical diagnosis and turned it into what helps us understand ourselves.

This also stems from the social model versus the medical model and the issue of self-diagnosis. There are a lot of autistic people who are not medically diagnosed due to a lot of different issues. One being economic standing or feelings of distrust in medicine. I do not agree with the distrust of medicine and honestly, I am unsure of this decision that I am making. I thought about it though and I realized that many people who introduced me to people first language were not autistic. I’m not saying people first language is bad, far from it for some medical issues.

Autism has become, to some people on the spectrum, their identity. Who am I to say they cannot be that? I have a medical diagnosis, but the social sciences fascinate me. The construct that we cannot identify as autistic sounds ridiculous to me. Even though at the same time, I feel like people first is the route to go. I’m torn on this issue. Any thoughts?

I found my rebel base

Some of you may have noticed on my homepage I have the quote, “Where is the Rebel Base?” This was mainly for comedic purposes and to highlight that I love Star Wars, but I believe that I have actually found the rebel base for myself.

It is coincidental that my base is also a group that starts their name with Rebel. That group being Rebel Cause Lancaster which is based in Lancaster, PA. Rebel Cause is a charity group that fights homelessness in Lancaster. I am honored to be considered a part if this group. Kaden, or as I named him in our messenger chat, Rouge Leader, is the founder of Rebel Cause and I credit him greatly for connecting me to a cause that means something. If not for him, I would not have a place to share my love of Star Wars.

Besides sharing a love of Star Wars, Rebel Cause also shares a love of family and that is what I believe Rebel Cause is. We are a family of people who has been through a lot individually, but find strength in our friends through Star Wars.

The last event that Rebel Cause hosted, shoutout to Tellus 360 for letting us do it there, was a Celebration of Star Wars. The date of the event coincided with the Star Wars celebration event, which was taking place in Chicago this year. Rebel Cause held a giant raffle for all kinds of awesome prizes and we raised a lot of money to help the needy in Lancaster.

I was at this event and I broke through a barrier I never thought I could and I have doubts on my ability to do it again honestly, but I walked up on a stage in front of 50 or so people and talked about the topic that was being discussed during a live podcast. This was about Star Wars Jedi Fallen Order and I talked liked I was meant for the stage. At least that is what I was told.

If this is your first time reading my blog it is pertinent to know that I have autism. My autism is never really an issue unless I am in crowds or in front of others, but that is what made this moment so big for me. I did not care about the crowd or the noise. I cared about Star Wars. This event is, essentially, a catalyst for me. It proved to me that I can talk to others without fear or doubt.

I have long been terrified of crowds, but my love of Star Wars broke that for me. There have been other times, of course, like metal concerts, but I did not talk at those. I talked at this event and I made people think of this event. At least I would like to think so. For everyone at the event, thank you for being there, it means the world to me.

Lastly, thank you, Kaden, for helping me break the final fragments of my shell that have been clinging to me for years. As the Sith always say, “Through Victory, my chains are broken.”

No rule is absolute and there will always be exceptions

Hey guys, it has been a while and I apologize for that. The final stretch of this last month of college was not easy for me. Not in the sense of the class and internship, but in the sense of finances on my end. I am not financially literate. This is, sadly, a gross understatement.

That is not what I want to talk about though, what I want to talk about is choice and how choices are relative to the choice being made. For example, the choice to not vaccinate a child due to fears about vaccine injuries and possible contraction of autism is flawed. On the flip side of that is that these fears were created out of a failure to listen to Doctors who insist on getting children vaccinated. The choice to not vaccinate is dangerous and detrimental to the kids that are unvaccinated. Herd immunity is a proven concept that more people need to understand.

With the current government, headed by frankly an idiot, there will be little headway on this issue. So, while I am on our president, I want to look at another issue plaguing the country regarding choice. The pro-life versus pro-choice debate is raging across the country right now. What I feel on the concept is that it is a woman’s choice on whether or not to get an abortion.

What I found startling about this is that my stance of pro-choice for abortion and pro-vaxx for the vaccines is contrary to each other. I fully support a woman’s decision to have an abortion because that is their choice. I, apparently, do not support a parents decision to deny vaccines. I thought long and hard about this and I have come to this conclusion.

I can have both opinions.

I know they seem contrary to each other, but what I understand is that both opinions support a person and a groups well-being. Abortions can protect mothers and vaccinations protect, for the most part, people from getting preventable diseases. The reason I am giving them a little leeway is that nothing is black and white.

These are my thoughts on these two issues and the concept of choice. I support choice when it is to the benefit not to the harm of someone.

The future but on my present tense

I have been struggling lately. Not with the usual depression or anxiety, but another issue. I’m heartbroken. I do not know why or who either, but when my heart has been broken before this is how I felt. I’m constantly unsure of what the future holds and that scares me. I want love, but I’m willing to wait. I need to get to a point where I am comfortable enough with myself before I am in anothers life.

What will it take to make me comfortable? I have no idea and at this point, I feel too dejected to care. I write this and the feeling of remorse from my only semi successful relationship pops up. It wasn’t truly successful. I was happy for a time, however. I want that feeling of love back. I do not think my present mindset is conducive to this though.

Am I meant to find love? Maybe, but in my mind right now, I’m not. I have feelings of hopelessness currently that are hard to ignore. I’m going to push on though. Maybe something will happen, not likely, but maybe.

Is my soul fractured? Nope! My foot, however…

I fractured my foot. It will be something I deal with for the foreseeable future, but I am sure that modern medicine can help me out. Just like vaccines do! I just read an anti-vaccine post on Facebook and I would like to remind everyone that science has determined that vaccines do not, I repeat, do not, cause autism.

On the subject of vaccines, I have one question, are the American people who think vaccines are bad trying to win idiot awards or do they like the idea of children suffering? I want an explanation of why the measles are back, why kids are dying to them and why, it seems, that only entitled white people are anti-vaccine? I, myself, am an entitled white person by virtue of my skin color and I do not get how someone can deny life by saying no to a vaccine?

I follow a lot of social media and I tend to fact check something that sounds outlandish. Huge shout out to Snopes by the way! Why bring that up? Mainly because those who think vaccines cause autism do the same thing, but they forget to fact check. Also, I am no expert and I admit I do not understand vaccine science that well. I do understand the condition that anti-vaxxers are afraid of though.

Autism. It sounds pretty intimidating and horrible, right? Wrong. It is a genetic disorder that is hereditary and, to the best of my knowledge, can skip generations. It is a social anxiety disorder where the person who has autism is terrified of social interactions. It also has the learning issues in one of two areas: math or language. I am good at language and I am horrible at math. Those who have been following my blog know my stance on autism, but I thought it prudent to reiterate it.

Why am I bringing up the fake autism link again though? Simply put, I want to vent and being frustrated with anti-vaxxers has always been a good outlet for me to concentrate and distract myself. Distraction is a potent coping skill that I possess. I am venting because I am at a point where my self-esteem is low and I need to figure out ways to lift it up. The reason that my foot is fractured is that of all the weight I have been putting on it coupled with the extensive amount of walking I have been doing recently.

My body image is a direct link to my self-esteem and for some reason, I feel that I need to punish myself to combat my eating habits. My punishment is eating more and this led to me fracturing my foot. What really sucks about this is that I stopped doing it, but I did not stop soon enough. I hurt my foot and now I am stuck not being able to exercise in my favorite way. Walking has become a therapeutic activity for me as of late.

With a fractured foot, I cannot walk. If I cannot walk, my stress levels go up and I get depressed due to the stress causing me anxiety. I do not know what to do to exercise. I have lost a lot of weight since I began my walking, 56 pounds to be exact and I want to continue that trend. If anyone has advice please message me about this. I need help.

Rebellion for Hope

As some of you may know, I am a part of a charity based in Lancaster County called Rebel Cause. I am honored to be counted amongst the members of this group. It honestly feels like a second family when I’m around them.

Rebel Cause would not be possible without the leadership of Kaden. The founder of Rebel Cause. We had an event this past weekend at a local bar called Rumplebrewskins. I had a great time! Rebel Cause raised a good chunk of money during the event at Rumplebrewskins. This will go towards helping the people at the Water Street Rescue Mission in Lancaster city.

The event was covered by a local news station called WGAL and you can find that story linked at the end of this article. It was a big step for Rebel Cause to get news coverage. Kaden had already been recognized by the magazine, Revelo, but being covered by the local news felt validating. That is how it was for me at least. I am a journalism major and I think anything having to do journalism is always cool.

Rebel Cause raffled off Star Wars merchandise and I was envious of everyone who won something. The memorabilia we had was really unique and awesome. A local artist designed prints for us to give out and a local game store called FarboCo donated some Funko Pops to the event. There were black series of action figures and the members of the Brick City Blockade network brought some awesome Star Wars items from up in New Hampshire. There were two other major Star Wars podcasts there besides Rebel Cause and Brick City. They were the San Diego Sabers and the Star BQ podcasts.

Both of these podcasts are good friends to the Rebel Cause group as well as the Brick City group. That is the great thing about Star Wars. Unity in the community is a common phrase said during the various podcasts, as well as the Friendom. It is these types of rhetoric that give me hope in humanity. The world is so screwed up now, it is reassuring that Star Wars is still around to unite the world.

Now, Rebel Cause is more to me than just a charity. It is a place where my obsession for Star Wars has a home. A place where I’m completely accepted, despite my flaws. I do not want to dwell on myself for too long, but I feel at peace when I am discussing Star Wars and for a long time that peacefulness was gone. My love for Star Wars was fading and I count myself lucky to have been able to get involved in Rebel Cause. I was in a point in my life where my depression was getting too unmanageable levels and Star Wars, through Rebel Cause, brought me back from the brink.

I want to thank Rebel Cause, Brick City, Star BQ, San Diego Sabers and all of the Star Wars community for what they do. Not only for me but for the world. The impact these groups will have will, undoubtedly, grow. The friendom will expand and the great things Rebel Cause is destined for will become reality. Star Wars does so much for so many people and it is incredible to see that positive energy turned into something special with Rebel Cause. I am honored to be amongst the Rebel Cause Staff.

It is imperative that the friendom continues. Star Wars can help so many people and that is what Rebel Cause is tapping into. The generosity of others is always a pleasure to witness. I forget exactly how much we raised at the Rumplebrewskins event, but I am proud of this group. We got news coverage and we made some pretty awesome announcements during the event. For more information on those announcements, you can go to Rebel Cause’s Facebook Page.

May the force be with you guys!

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Battling the darkness inside my soul

I have a history of darkness in regards to my thoughts and feelings. Wishing wrongs upon innocents were a frequent attraction at the carnival that was my mind, but the worst offenses in my own mind were against myself.

Struggling alone was my past-time in High School, but once I got into the 12th grade I started a metamorphosis of thought. I made a couple of friends that I still cherish greatly. I do not talk to some of them much anymore, but their assistance in my mental health was and, for some of them, continue to be a constant light against the darkness that I feel. To those that still put up with me, thank you.

As of this post, the darkness that I feel is getting greater. I am taking steps to stop this descent and I am confident that I will claw my way out of this pit. It is hard for me to feel optimistic right now though. On a scale, which is a form of measurement I detest, I am an 8/10 on depression and an average of 10 out of 10 for my anxiety.

I have so many people that I know also struggling, and I want them to know I understand the pain they are feeling. I want to help them as much as I want to help myself. I have noticed that when I help others, I feel better and I live for that feeling. A feeling of euphoria takes me and it is a feeling, unlike anything I have ever experienced.

This darkness is not new to me and I want to use this event of darkness to exploit the darkness. I want to break the darkness that has a grip on me. I think that I need to break this feeling of self-hatred. This feeling of loathing for myself and the feeling of disrespect that I have for myself. I do not respect myself and I do not think I ever had.

I do not take care of myself physically, mentally, emotionally, or spiritually. As far as actual spiritual growth, I do not mean religion. I would rather not go into a religious debate either.

My spiritual growth has come in ways that are hard to explain. It has suffered lately and I think that stems from my lack of faith in humanity. That same of lack of faith has impacted everything in my life and I realize that building myself around the troubles of others is not healthy for me, but I need to and I will continue to do so. We are a large group of people. Humanity I mean, and I always find it really hard to understand the hate that exists in the world. I am no person to step up and fix the issues that are plaguing that world.

The long and short of this post is that I let environmental factors that I have no control over bother me. I need to focus closer to myself, but how can I? I need to help and I think that might be the issue. I want to help so badly that I sabotage my own care, and that is not good. Realizing this will definitely help as I walk down this road that I have established for myself.


Big Day Today

I am on the cusp of something great. I have been noticing a downward trend in my emotions over the past few months.

This trend is remminscent of how I have felt in my high school years. Back then, however, I could not detect it. I can now and I am taking steps to better myself.

I’ve told a few close friends about this already and I think I’ll keep the specifics to myself as to what I’ll be doing.

Just know, I am determined to defeat my depression, anxiety and paranoia. They have been disruptive lately.

I don’t want anyone to be overly concerned. I have had it worse than this and I persevered each time. I have no doubt that I will again. I will need support during this time, but I really don’t want worry to be a thing for me. I got this!

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