I never claim to be an expert. I am an Autistic Person who is sharing her experiences. Those are two vastly different approaches when it comes to providing insight as to what Autism is. There are people out there who are passing themselves off as experts and they are getting feedback from those who are taking it all in as fact. Please be careful! Perpetuating untrue stereotypes and misinformation does not help anyone. Do your research. Be skeptical, ask questions.
Dealing with negative comments is no easy task. It makes my anxiety kick into high gear and makes me question how I feel about myself. I need to remind myself to breathe and realize that the comments don’t reflect how they feel about me but how they feel about themselves. The past few days i’ve had a few people utter the F-word about things I have posted or done.
I posted an unpopular opinion puffins meme from mindyourowneggs on instagram that read “I’M TIRED OF PARENTS COMPLAINING ABOUT HOW TOUGH IT IS TO RAISE CHILDREN” and at the bottom of the image it read “NO ONE FORCED YOU TO HAVE KIDS.” It prompted a flurry of messages on instagram from an Autistic Mother with an Autistic Child who took it to heart.
As a societal-whole, we make choices and need to deal with the consequences of our actions.
I have been incredibly vocal about my Childfree stance and I do frequently worry about the sad state of our planet. My opinion encompasses all those feelings and I don’t want people to think I am specifically targeting parents of Autistic Children. I posted that meme as a blanket statement. I can’t say that I have much in common with parents of Autistic Children, because I don’t. When I speak, I speak from my heart. Entirely based on my experiences. Clearly, this doesn’t go over well with everyone, but those who have chosen to support me are people I would like to thank for giving me strength to get by. If anyone wants to believe that seeking out allies on social media platforms, by sharing this story, is a negative or “schoolyard” tactic, so be it. Childfree Autistic Adults do exist. We may be going against the grain of what society wants or expects from us, but we are just as valid.
There’s many things about myself I wouldn’t want to duplicate and therefore being Childfree has always been the best choice. How would I benefit from hearing people complain about a choice I have consciously decided not to make? I can’t provide any insight other than saying “Well, you made this choice.”, I can’t. There’s honestly nothing else I can possibly say to satisfy a parent. I still care about the rights of Autistic People as a whole and with that being said, I do what I can with my Childfree stance intact. There are facebook groups for Childfree individuals. There are instagrams, twitter accounts, websites, even Childfree Cruises and the Not-Mom Summit. A community which thrives. I’m not going to stop doing what I am doing because one person thinks I need to be a certain way.
I posed this question on twitter:
— Margaux AKA Retro (@artfulretro) October 22, 2018
The response was overwhelming. It seems a lot of people tend to agree with me.
A number of venues will offer, what they consider to be “sensory friendly” events which they believe caters to those who are Autistic and yes -it does cater to some, but certainly not all.
According to AMC (who works with Autism Speaks) this is how they define their sensory friendly film program:
AMC Theatres in 2007 started the AMC Sensory Friendly Films program in partnership with the Autism Society to bring a unique movie experience to our community! As part of the program the film showings have their lights turned up and the sound turned down.
My thoughts on something where the lights are on and the sound is down: Terrible. Just awful. For me, not being able to hear dialogue and having bright lights in my face would not be sensory friendly. I function best when the lights are off or there is natural lighting. Each and every person on the spectrum is different and their ways of mentally processing incoming sensations are all unique to each person. You can’t simply say something is Sensory Friendly and use it as a blanket statement. I believe a better term would be Sensory Aware and a disclaimer that would say something like “this isn’t sensory friendly for every autistic person or person with sensory processing difficulties” would be highly beneficial. It’s just another step towards inclusion or at least a better understanding of what Neurodiversity is.
My Birthday was a couple days ago and I felt as though a new decade in my life deserves a tribute.
This past year I have felt like a lot has changed. I’m not sure if it’s for the better or if it’s just me being a persistent piece of work. I don’t feel as though i’m any different than I was as a teenager. Perhaps less of a social circle, more angry and frustrated. Less energetic and definitely more anxious. Those are not the most positive attributes but I honestly believe that i’m trying to live my best life and create some social change.
This year, I was featured in a local newspaper earlier in September. I also have multiple speaking opportunities coming up and I have done nearly 50 collaborations with various brands and attractions. My traffic to my website has increased significantly from last year (1,454 visitors in 2017 and so far 5,243 this year, apparently that’s a 260 percent increase!) which, I firmly believe, is a true testament to my hard work and fierce diligence.
I am able to express myself through art, writing, videos, and podcasts. I always said I wanted to start a blog and I feel that I am finally in the right headspace to contribute my voice to a bigger cause. I have only been diagnosed as an Autistic individual since I was 28 years old and now that i’m 30, the clarity and self-awareness continues to grow.
The hurdles I faced as an infant, child, teenager and now adult are just things I need to live with and I am so lucky to have some incredible people on this journey with me.
Older and wiser voices can help you find the right path, if you are only willing to listen.
…But apparently, they do not listen!
If you haven’t seen this, you should:
This whole thing is laughable at best.
I specifically told her about my disapproval of Autism Speaks and how their aim is to eradicate autistic individuals like myself. I told her how important this detail was in regards to my own journey.
Every so often, I find myself looking up the title of the article to see where it’s been posted.
To my surprise, a disgustingly sick feeling came over me, It has been posted on the Autism Speaks facebook page for all to see.
The VERY article that had this statement in it:
The goal, Wosk explained, is to help people become more educated about autism — that’s why she spends much of her online time being an activist for autistic people and protesting against organizations like Autism Speaks, which Wosk said spend more time looking to eliminate autism rather than support autistic people.
It had been up for 2 hours with over 40 likes and 2 shares.
I don’t think any of those Autism Speaks supporters (or even Autism Speaks themselves) even bothered to read my article, because if they did, they wouldn’t have posted anything with an unfavorable mention.
This begs the even larger question of the importance of autistic opinions. I believe that when it all comes down to it, it’s that money rules and we don’t matter.
This was certainly not my first online encounter with this greedy “charity”. Nope. Autism Speaks Canada actually e-mailed me once trying to tell me all the things they do. TELLING me is important to note because they failed to read or even address anything I had said.
Autism Speaks wants to replace and eliminate us. Our voices are not worthy or important to them.
Today, I stumbled upon a video shared by Eve of International Badass Activists. It was Jenny McCarthy promoting a hateful book and spreading the idea of #endautismnow on September 20th, the release of the book.
Transcript of her video:
“Hey Guys, Jenny McCarthy here. I’m back! With my 2nd call to action.
1st off, thanks you so much for coming in droves to support my 1st call to action: Which was to pre buy jb handleys book, how to end the autism epidemic.
The power we have when we all come together with common goals is immeasurable! And what better common goals than to bring us together then the health, the safety, the love of our kids AND wanting to prevent this from happening to future families.
The more time passes the more difficult it is for us to tell our stories and it’s only going to become more difficult.
SO WE MUST ACT NOW, which leads to our next mission, SEPTEMBER 20TH IS THE date of the book release and we want to see hundreds of you at bookstores across the country, where we will facebook live holding up copies of this book
The book that will reveal the truth behind the autism epidemic and most importantly, help end the autism epidemic.
Now this is how we can make it happen:
There’s a page I called, that it started, hashtag ENDAUTISMNOW
This will be an ambassador sign up page and what i need from ambassadors will be to represent your city and bookstore along with creating a facebook page so people in your city know where to go and once you’re accepted in the group, i will be filling you in with more details, now the goal again is to reach out to as many people as possible in your area to pre-buy the book, “how to end the autism epidemic” and then gather as many people as possible to that bookstore on september 20th and we will all facebook live from hundreds of stores across the country. They might have silenced many of our kids, but they ain’t gonna silence us. The groundbreaking information in jb handleys book could lead to the end of the autism epidemic. But that’s only the first step! It’s up to us, we’ve got to come together, unite and make some noise! Kim Kardashians’ ass didn’t really break the internet, but we can! Will you join me? Please send a request to the facebook page, hashtag endautismnow to be part of this massive event to help end the autism epidemic.
Thank you so much
Here’s my response. I really hope you have a chance to watch and interact with me.
I’ve been a Vegetarian for roughly 15 years, so naturally i’ve wanted to go to VegExpo. It was incredibly busy! You had to push past part of the crowds to get anywhere so that was a bit tedious. The fact I had the chance to connect with brands that I already love, taste delicious new treats and be immersed in a space with likeminded people made it completely worth it. They had over 200 vendors. The location was the Vancouver Convention Centre and it ran from 10 until 5pm. We got there at around 10:15, waited in line for about 15 minutes and got in at 10:30. We stayed for 3 hours and I’m really happy we went early. As the day went on it just kept getting busier. It’s really nice to see something of this calibre be such a success.
Back when I was employed in the retail health food sector, I had the privilege of going to CHFA. This, being a show open to the public and not just exclusive to retailers and wholesalers, was, well, very different: The demographic and the approach by companies was more tailored to their customer base. It was interesting to compare and contrast.
I was really happy that I was able to talk a bit about my story and connect with brands that seem to align with my vision and values. I hope this gives me some opportunities for some great taste test videos (did you see this one?)!
Here are the brands/companies/associations that I mention in my video above:
- One Degree Organic
- Silver Hills Bakery
- Westpoint Naturals
- Choice Markers
- Vero & Co.
- Planet Hemp
- Manitoba Harvest
- Hippie Snacks
- The Fur Bearers Protection (Defender Radio)
- Ben & Jerry’s Non-Dairy
- Pureleaf (teabags)
- Wise Bites
- Wize Monkey
- Chosen Foods
I can’t wait to taste some of the goodies i’ve brought home.
Are you following a strict diet? Are you Vegan or Vegetarian or have food aversions? I’d love to hear about your story!
Thank you so much for your continued support,
I remember watching a CBC Documentary “The Trouble With Experts” back in 2015. http://www.cbc.ca/player/play/2651996758
It essentially outlined how anybody can call themselves an expert. You didn’t need any kind of accreditation to utilize this title– You just COULD. Now, that got me thinking about self-proclaimed Autism Experts, yeah, you may know the ones. They are bright-eyed and bushy-tailed and able to create a profit off of this. I’m certainly not talking about Amythest Schaber who I have the UTMOST respect for. (so please, don’t think that for a moment!) I’m talking about the ones who actually attend talks and tell people how to profit off of their different abilities and have acquired a mass amount of social media followers. I want to make one thing inherently clear: I AM NOT AN AUTISM EXPERT. I will begin to preface my videos by giving a little schpiel about this. My views, my opinions, yada-yada-yada. I’ve been asked for advice and I try to make sure they know that I, in no way, have any kind of training or expertise. I just live by experience. I want to share my story in the hopes that people relate with me but don’t go thinking I’m some kind of shrink. I do this blog because I love writing, taking photos, making videos and trying out things in my very own way.
If it’s too good to be true, it probably is. ALWAYS ASK QUESTIONS. It’s more than OK to be a skeptic.
Blogging can be joyful but it can also be incredibly disheartening, frustrating and full of defeat (yes, i’ve mentioned this plenty of times before).
I owe a lot of gratitude to the companies that have been kind enough to work with me, not because of a ROI but because they genuinely care about my opinion and the content I create.
If you are a large corporation worth billions of dollars and you decide to run an “Autism at Work” program, employing autistic individuals and running seminars/talks with lots of press material and attendance, it’s in your very best interest to make sure that everyone is on the same page.
What do I mean by this?
Your PR company should know better than to use the terminology “with autism”, they should also realize that if they are employing autistic individuals then that would be a perfect segue to attracting autistic customers.
I got so wound up and so incredibly anxious after dealing with all this in the morning that I have felt unwell the entire day. I tend to internalize my feelings.
Sometimes I think of our home, our planet as seen from space. It makes me realize how insignificant I truly am and helps puts things in to perspective.