NO WAY! Seriously??? We’re at the end of the blog series? Oh well, I guess it’s like what my dad says, all good and bad things come to an end. But no matter how something ends, you have to give it your all and have a strong finish. So that’s what I’m going to try to do with this last chapter. Not only end strong, but leave you with questions (and these are the good questions, not the, “Ugh, what the heck is this? I’m confused” kind of questions).
But speaking of that, questions are pretty much what this last chapter embodies: What is the future of Autism Spectrum Disorder? With all honesty, I wish I could accurately tell you what’s going to happen in 10, 20, and even 50 years. But the reality is that no one can exactly tell the future. You can make predictions as best you can, but then you risk looking dumb if you’re wrong (that’s a slight jab to the researchers who said almost 20 years ago that most autistic people would have little to no success). And that is exactly why I’m not an analyst, a pollster, or a Monday Morning Quarterback. I’m just a regular guy with autism who is willing to make educated guesses on the future, based on what I have seen over the past several years in the autism community.
The thing that makes predicting autism’s future especially difficult, however, is that there are still a lot of decades-old questions about the spectrum that are still unclear. The biggest and oldest one: What the heck causes autism? That’s right! It may or may not surprise you, depending on how well you are knowledgeable about ASD, but YES. WE DON’T KNOW WHAT CAUSES AUTISM! Researchers and scientists have been trying to come up with the answer for years of what makes autism AUTISM. They’ve provided countless theories and analyses and who-knows-whats…I mean, I’m pretty sure some scientist or wannabe out there claims they have the answer (and I’m 100% positive that they’ll tell you THEY MEAN IT!). But as an autistic person who has the disability firsthand, I’ll tell it to you straightforwardly: WE DO NOT KNOW WHAT CAUSES AUTISM. Will we know? I DON’T KNOW! Why can’t I make that prediction? BECAUSE I JUST CAN’T! All I can say is that hopefully there will be an answer someday as to what makes me so special and unique.
But the truth is, I don’t really care right now whether we have the answer…and I think I can speak for a lot of other autistic people when I say that. Sometimes, having the answers in life can be dangerous, especially if they fall into the wrong hands. Let me explain that!
Autism first became a diagnosis back in the 1930s, when “Case One”, a.k.a Donald Triplett, got evaluated for disabilities by physician Leo Kanner. Since that time, autism has slowly but surely become a prominent disability in the media. And with that prominence came some conspiracy theories and false claims that have proven to be dangerous for autistic people like me. One of the biggest false claims is that vaccines cause autism. There is overwhelming evidence that vaccines don’t, but, of course, some media outlets and conspiracy theorists will spread this misinformation online anyway because they just don’t care, and are too fixated on their beliefs and stuck in their ways.
Another major false claim that is perhaps the most dangerous is the fact that some autism organizations want to CURE autism. Let me be very clear to all of you: AUTISM DOES NOT NEED TO BE CURED. As a matter of fact, THERE IS NO CURE, AND I HOPE THERE NEVER IS ONE. Being autistic is part of who I am, and it defines me in several ways. So it is not acceptable to say autism should be cured. Again, you CANNOT cure it.
But that’s sometimes what I think about when it comes to possibly finding the answer to curing autism. If the wrong people find the answer before anyone else does, or if these people find out from someone else, then they may be able to use that to discover some sort of cure or serum to either eliminate or mitigate autism. I don’t necessarily worry about this, because I really don’t like to worry about things; but it may be a concern for autistic people and their families in the future.
On TikTok, there was this autism foundation, who is seemingly not on the platform anymore, who said in one of their videos last year that their goal was to find a cure for autism. From the moment the video was posted, many autistic content creators who I’m friends with on TikTok shared the video, responding with outrage and anger. This is just one example of an organization or company who may use the answer of what causes autism to do harm instead of good. I can only imagine how much damage they would bring to the autism community if this were to really happen. But I like to think positively, so I’m just going to say this: I know for a fact that they will not find a cure, nor use the future answer of what causes autism to find one.
The next thing I’m about to say may receive a lot of backlash among certain people, but I am a very open and honest person, so I’m just going to go ahead and say it: I am an avid supporter of Autism Speaks. YES, I REALLY SAID IT! Some of you may be either fuming with rage or fiercely scratching your head. For anyone else who doesn’t understand why this may make many people triggered, I’m more than happy to explain.
Autism Speaks is the world’s largest autism organization, founded back in 2005 by a couple whose grandson was diagnosed with autism. Since the organization’s inception, it has been the subject of widespread criticism. Many of these criticisms include initially using the word “cure” in their mission statement (but this word was dropped in 2016), extensively using the controversial behavior therapy, ABA (applied behavioral analysis), having a lack of autistic people on their executive board, and the fact that very little of their donations goes towards autistic people and their families.
So, at this point, you’re probably wondering, “Why the heck are you supporting this organization?” I won’t get too much into this detail, as it is a story for another time. But I will say this…
While I do not like to passionately defend my actions and decisions since that just makes me look like I just want to have the “last word”, from what I believe, Autism Speaks has made improvements in the past few years. Please keep in mind: not only is this organization the largest one catered to people with autism, but it was technically the first one to receive a lot of recognition. At the time when it was founded, a lot of people believed in the harsh stereotypes and treatments that I described above; and, unfortunately, Autism Speaks tagged along with those people.
But what I appreciate about the organization is that they consistently have learned from their mistakes, and are willing to listen and do better. Examples include the word “cure” being dropped from their mission statement, their work to improve ABA therapy to make it less brutal and unethical, and their push to include more autistics on their executive boards nationwide. DON’T GET ME WRONG! They are not a perfect foundation, and there’s still so much work they need to do. But just because they have made mistakes in the past, does not mean they need to let them define their future. Although, I will say one thing that I do 100% agree with the critics on.
They need to fix their donations strategy. While their donations towards autistic individuals and their families have improved, in my opinion at least, the amount that goes to these people is not enough. And I do hope…and remain optimistic…that sometime down the road, they fix this issue. I wish I had the answer to this problem, but that is, unfortunately, something that goes beyond my head. But all I can do is stand here rooting for them, being of support.
So, at this point, you’re probably wondering why I’m saying all this. You may be like, “GW, c’mon! I thought you were talking about the future of autism!” Well, the next look into the future correlates to the movement surrounding Autism Speaks, and the countermovement that has risen in the past few years.
Several years after Autism Speaks first became an organization, a group of self-advocates and other autism foundations formed a movement called #RedInstead, which strongly promotes self-advocacy with a mission to provide services to people with autism that teaches them how to embrace their disability. While I do not agree with all of the #RedInstead movement’s actions, they do make great points. One includes the fact that Autism Speaks’ famous blue puzzle piece logo should not completely represent autistic people, which is why they try to promote autism as an infinity symbol with different colors almost representing a rainbow.
This movement is extremely popular on the TikTok platform. I should be the one to tell you that almost all the advocates I follow on this platform despise Autism Speaks, with some wishing it was boycotted and eliminated. Some Autism Speaks supporters like me have tried to get on TikTok to share our side, but instead, we have been shouted at and belittled through comments or video reactions. Now, as I said before in Chapter 1, I could care less about what a hater thinks. But it’s the future of this hate and backlash that I’m just a tad bit concerned about.
I feel like the autism community is becoming very political: as in, the Autism Speaks’ #LightItUpBlue movement vs. the #RedInstead movement. And all of a sudden, after joining the platform, I am seeing autistic people on both sides fighting and yelling at each other. While some autistics on both sides have shared their viewpoints respectfully and kindly, many have not. I could lash my anger out right now of how disappointed and frustrated I am with this, but hey, I REALLY CAN’T CONTROL WHAT OTHER PEOPLE SAY. All I can do is try to spread my message to be as inclusive to both viewpoints as possible.
This makes me very cautious about giving my predictions for the future of autistic advocates. I can definitely say, first and foremost, that I would have NEVER thought, in nearly 20 years since being diagnosed, that autistic people would be yelling at each other. What makes the autism spectrum so powerful is how it’s able to unite other people, including those who are autistic as well. But what’s going on with these two movements just goes against everything that makes autism a unique disability.
So if there’s ever going to be a future for advocates like me, we need to drop the politics, stop playing the blame game, and get back to focusing on finding the tools and resources that help people on the spectrum. My dad always taught me that fighting and arguing about a problem causes a lot of yelling, but makes no solutions.
I’ve certainly learned to take this advice…and then some…and use it for my TikTok platform. That’s why I hardly post any videos anymore discussing my viewpoints on autism. I simply focus on making fun and eccentric videos that keep my audience engaged as well as educate them on my journey as an autistic. I mean, face it! Would you rather hear another video about a heated autism debate? Or, would you rather hear me say in a video, “I’m autistic, and I like to GET LIT!”? That’s an actual video I made, by the way. You should go check it out!!!
But as I’ve said time and time again, I am very optimistic about anything in the world of autism, including this particular situation. There will always be a solution to solving these problems, and, in general, nothing lasts forever (remember what my dad said in that all good and bad things come to an end?). But…all of us, as a community, have to put in the work to solve these issues. The last thing I want to do is put these problems on to the generations 20-30 years down the road. That would just be cruel!
But through all this talk about the future of just the autism community, I’m sure you want to ask me what my future is. Well, I don’t mean to let you down, but answering that question accurately is pretty tough. But I will say that I have a five-year plan on what I want to do in the future.
As I’ve told you and explained to you throughout this whole series, I work in the Broadcast News industry as a TV producer. As much as I do have a passion for this career field, I also have just as much drive and determination for my business/influencer campaign. It’s really expanded in the past couple of years, even with the ongoing pandemic bringing its challenges, and I know that I can take it to new heights in the next five years.
So, in the simplest terms, my five-year plan includes a Plan A and a Plan B:
- Plan A: Pursuing my business full-time. This includes traveling to schools and community centers to give speaking engagements and talks on autism and neurodiversity.
- Plan B: If Plan A doesn’t work out, then I will keep pursuing my OTHER dream to become a TV anchor. I grew up admiring anchors and reporters such as Lester Holt and Ann Curry. So, I am out chasing my dream to follow in their footsteps, but take things to the next level. And I can do it ONLY if I set my mind to it.
Obviously, you can tell both of these plans are very ambitious. But without ambition, these goals will never happen. Like I said before, I have the power to make these dreams a reality. My dreams can only show me the door. I just have to walk through them.
And, lastly, what is the future of my autism? WOW! What a tough question! Just as with my autism, autism in general is changing every day. New research is being discovered about autism, as well as new interventions and therapies…
Man, this is a very difficult question. How can I write a solid answer, while delivering a satisfying conclusion to this whole blog series? Maybe it’s just best I shouldn’t answer it at all. I mean, in reference to what I said earlier, I don’t want to be an analyst or predictor that just looks stupid when the outcome is not in my favor. So, I guess I’ll have to leave you all with a short and simple, but anticipating type of answer: WAIT AND SEE!
Yep! I am pulling that one on you guys. My future can only be decided by me, and not by anyone else. And I have to be careful how I go about predicting it, too. So I think I’ll have to handle things just as what Doctor Strange said to Tony Stark in the final battle of Avengers: Endgame when Stark asks Strange whether they win the fight, in which Strange replies, “If I tell you what happens, it won’t happen.”
And in the words of Tony Stark’s response to him, all I can say about the future I’m pursuing is, “It better be right!”
AutismChoseMe 