Not Weird, Just Autistic, with J.R. Reed | EDB 242
J.R. Reed shares his journey to becoming an autism self-advocate
J.R. is a late diagnosed adult who was diagnosed with Asperger’s nine years ago. Since then he has taken a 20+ year freelance writing career and changed focus to developmental disabilities and mental health. In 2012 he created the website/blog Not Weird Just Autistic, as he spent the first 45 years of his life thinking he was weird, but now knows he’s just autistic, with still a smidge of weird in there. He currently writes for The Mighty, Different Brains, and Not Weird Just Autistic. J.R. also teaches online classes, speaks to groups as small as 15-20 or as large as 1,500 in the Missouri State Capitol. J.R. sits on the board of three autism charities. The author of “An Asperger’s Guide To Dating Neurotypicals”, J.R. works with those high school age through adult to help them live better lives as well as educates NT’s on who we really are. He’s currently working on two more books.
For more about J.R.: notweirdjustautistic.com
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HACKIE REITMAN M.D. (HR):
Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today I’m so glad we have with us coming all the way from Missouri, the “Show Me State”. We got J.R. Reed. J.R. Reed, in addition to being a great autistic self-advocate, who was diagnosed well into adulthood, he’s got a lot of other things you’re going to find very interesting. J.R., welcome to the show.
JR REED (JR):
Thank you. And as I like to say, I’m coming at you from a log cabin in the Missouri Ozarks.
HR:
You know they have internet and those log cabins.
JR:
Yes, they do have it or had those log cabins
HR:
What Abraham Lincoln could have done today.
JR:
Although I will say this is, it’s not a Ted Kaczynski log cabin, you know. There are people around.
HR:
Well, J.R., thanks for being with us.
JR:
Thank you.
HR:
I think you’ve done so many things. You’re all over the place speaking, writing, doing so much. Why don’t you introduce yourself to our audience properly, so they know all about you.
JR:
Okay, well, I was born in what I like to call a time before there was such a thing as autism. Autism was not first diagnosed until at least a decade after I graduated from high school. So, there was no special education. There were no accommodations for me. Starting fifth grade, I began hearing weird, stupid, and lazy from my teachers. My classmates were a little more colorful. As I got into high school, I kept getting told that I can’t, or won’t, live up to my potential because they could see the intelligence in me. It just wasn’t transferring to the test scores and the assignments. And I honestly believe that was just the way I was being taught, you know, but it’s hard for me to fault anybody. I mean, yes, weird, stupid, and lazy are not things you want to call kids. But, I just tried to look at it and remember that nobody knew what autism was. Nobody knew about the brain being differently wired or a different way of thinking. They were going off of what they knew at the time.
HR:
Well, it was a different time. I remember when I wrote “Asper Tools”, even more recently, we’re learning more every day. That’s why neurodiversity itself, with all of our different brains, is so important. And that’s why self-advocates like yourself, who are spreading the word, are doing so much.
JR:
Thank you.
HR:
Talk about your experience addressing the Missouri State Capitol?
JR:
Well, that was for Disability Rights Awareness Day. They had an hour for speakers, and they had 11 politicians that got up and spoke. And then there was me to close off the event. The event was to go and speak to their local politicians and kind of give them their stories and ask them to, you know, please vote positive on bills and measures that had to do with disability rights. I remember the first thing saying, when I got up there was three things that freaked me out: large crowds; loud, random noise; and movement that is not in a discernible pattern. I guess I’m in the right spot. And the other thing I told him is, “You know, I live in a town of 4,000 people.” So, statistically, there’s probably close to 100 people that are autistic in my little town. Well, I’m the voice for those people that can’t speak. Just like you’re the voice for the people in your community that can’t, or won’t, speak up. It’s so important for you to tell your stories and tell their stories, and let the politicians now that, not in a threatening way, but this is your voter base. And oh, by the way, the voter base has families, have friends, have neighbors that will all help to vote along these same lines. So you can very easily be voted out of office, or you could very easily be kept in office depending on your policies.
HR:
Did you get feedback from that?
JR:
I got a standing ovation.
HR:
That’s great. That’s great. Now tell us how and when you got diagnosed,
JR:
I was diagnosed just before my 46th birthday, which means I went 45 years trying to be that round peg shoved into a square hole, or, as I like to call it, 45 years of being shoved into a mold of the neurotypical. I covered the NHL for 13 years, covered the Anaheim Ducks for most of that time, had a season credential for them for all that time, but I’ll tell you what, being in an arena of 18,000, screaming fans with pucks coming off the boards, and all that, I literally had to go outside between every period just to kind of decompress, get my brain ready for the next period. UntiI got diagnosed, I couldn’t explain to anybody why I had to do that. It was just instinctual that I had to. People talk about their autism diagnosis, or their whatever diagnosis, as being a negative experience. To me, it was an epiphany, like the skies opened up. I finally had an answer for all the questions that I had, and, as I walked back to my car that day, I thought, “Hmm, I’m not weird, just autistic.” And that would then be the cornerstone of the next 10 plus years of my life.
HR:
Tell us about your work as a Certified Cognitive Behavioral Therapists.
JR:
Well, I wanted to be able to do something more than just talk about what it is to be autistic. My whole focus is on adults that have slipped through the cracks because ,you and I both know, once you turn 18 funding is gone. I mean, there are no programs for adults. So I wanted to work with not only adults but with teens and tweens that were growing up and letting their families know that a lot of this has to do with the environment we’re raised in, you know, it being positive, letting them have their strange quirks. Steve Jobs and Bill Gates, never actually diagnosed as being autistic, are both believed to be autistic. Can you imagine what technology would be like today if their mothers had told them to stop tinkering in the garage when they were kids? You know, I mean, it’s the strange little habits that we all have. Twenty years ago, nobody thought you could make a living playing video games. Now you can.
HR:
Very, very well put. Now, what advice would you have for any adult who just got diagnosed? I’m not talking about little children now.
JR:
No, no adult…
HR:
Adults who just got diagnosed with autism?
JR:
Okay, well, let me say something first. There’s the medical model of autism, and there’s the university movement. Both have their good points and their bad points. The medical model of autism tells you about your deficits. That’s the bad part. The good part is the research that they’re doing, and the breakthroughs they’re coming up with. So I would say, really temper what you read. When it comes to medical stuff, I read more papers and journals and experiments, the things they’re learning. When it comes to really feeling good about yourself, and knowing what it’s like to live an authentic, autistic life, you go to the self-advocates, you go to the parent advocates, you go to people like Becca Laurie Hector, as you mentioned, Larry Coleman’s. There’s so many out there that I follow and listen to that just have really good insight into what it is to live as an autistic adult. I will tell you this, every autism self-advocate that I know of would not hesitate to take an email from their website with somebody asking the question about, “I’m stuck. What do I do?”
HR:
“I’m stuck. What do I do?” You know, that’s the thing too… getting people, not just with autism but with any neurodiversity…
JR:
Exactly, exactly.
HR:
to come foward and to say, “‘m stuck. What do I Do?” And who did they say that to?
JR:
You know, I think there are many, many great Facebook groups for people that are on the spectrum or neurodivergent. Where people can throw in their two cents and help each other. So I would say that’s another good place to look. You know, when you’re in a fairly rural spot like I am, you’re not going to find many live support groups, but I can talk to people around the world.
HR:
And we appreciate you volunteering here at DifferentBrains.org. What led you to get involved with Different Brains?
JR:
I researched before I talked to you about submitting that first article. I really liked the content that you had. It was all geared positively towards being neurodivergent and tips and tricks on how you can improve your life, as well as facts on what they’re learning right now, what science is learning right now. So I think, you know, finding a place that is reputable when it comes to things like that really help.
HR:
Tell us about your upcoming books.
JR:
Well, the first one is – I wrote one several years ago, and after I self-published it, I realized it sounded like a textbook – it was called “An Asperger’s Guide to Dating Neurotypicals”. Over the years, I realized that it’s not just romantic relationships that we struggle with – it’s business, it’s friends, its social, and school. So, I’ve rewritten the book to cover relationships of every type. The other book is called “Not Weird Just Autistic” and kind of chronicles the story of my life growing up before there was autism, how it impacted me. Then, the turning point, being diagnosed and what I’ve been doing now and how much happier and better I feel about myself and about things.
HR:
In addition to your books and your speaking engagements, what other methods of communication in today’s world are you using?
JR:
I blog on my website, “Not Weird Just Autistic”. I do some pieces for you. I do some pieces for The Mighty, which doesn’t deal with just neurodiversity. If you’ve got any kind of chronic illness that is a great site to go to to look for ideas and tips and stories from other people. I would like to find some more outlets for me to write for on a regular basis. I just actually about a half hour before we recorded this, I got an email from somebody asking if they could reprint an article that I’d written on traveling with my service dog. She’s writing a book on service dogs. I emailed her back and said, “Absolutely, whatever you need.” By the way, I was thinking about writing a piece on traveling on an airplane with service dogs. If I write that fairly soon, is that something you’d be interested in? She jumped all over that.
HR:
That’s great, especially nowadays.
JR:
Yeah, you know, it’s crazy. I had a hotel reservation for later this month to stay in Hannibal, Missouri, which is the home of Mark Twain, one of my favorite authors of all time. I just sent them a note that I would be bringing a service dog, just as a heads up, and they emailed me back that I would not be allowed to stay there unless he had a vest, a leash, and an ADA service badge. Well, there is no such thing as an ADA service badge. Those are all scams that people try to get you to spend money on. And, in fact, when I sent them the ADA laws, it specifically said you cannot ask for a badge, certification, or any piece of paper that has to do with your dog being a legit service dog.
HR:
Service dogs. There’s a lot to be learned about service pets.
JR:
Yeah, and you know, just the very basics. There’s only two things you can ask of a service dog. Is it a service dog? And what tasks does it perform for you? The only two questions a business can ask. Now my point to the hotel asking for all that certification, when I fly all they want to know, all they want to see is its rabies certificate and a letter from my doctor stating that I need a service dog, and he can get on the plane.
HR:
What’s the certificate?
JR:
It’s not a certificate. It’s just a letter from my primary care doctor saying that I think he would benefit from having a service dog.
HR:
But do you need any other documentation besides that letter?
JR:
Just a current rabies shot.
HR:
Okay, gotcha. Well, that’s good information for our audience, for sure.
JR:
Yeah.
HR:
Right. Is there anything you’d like to cover today, J.R. Reed, that we have not covered?
JR:
I think that the one thing I would want to say is, you know, be loud and proud about who you are. Don’t try to hide who you are. If you’re neurodivergent, if you’re autistic, whatever it is. You know what, don’t try to hide it from people. Share it with people. Let them see what it is to be an autistic person in the world today. Because I will tell you this, four years ago when I moved here, the people who live across the street invited me over to sit in their garage and drink a couple beers one night, and I was told that I don’t look autistic. And I said, “Hmm, what does it mean to look autistic?”, and the wife described somebody with Down syndrome.
HR:
Well, you know…
JR:
Yeah, that’s not us.
HR:
You see, I don’t blame the people for that. We don’t educate as a society.
JR:
Exactly. Exactly.
HR:
We started Different Brains because of all these neurodiversities, which, incidentally, all overlap. We’re trying to get all the researchers to share from their different silos, say for autism, Alzheimer’s, you mentioned Down syndrome, and they’re all linked up. I don’t think it’s possible to be autistic and not have some degree of anxiety with a little bit of depression.
JR:
You know what, and I will say this, I mean, I deal with ADHD, depression, and anxiety. And I will say, for a fact, for me, for a fact, that growing up in school, and hearing all the things that I heard, definitely, definitely added to the anxiety and to the depression. That’s why I tell parents it’s not just when they think of keeping them in a good, healthy environment they think of home, but it can be the business place. It can be school. It can be social groups. It can be so many different things. You just got to make sure that you’re in a healthy environment in all those places. You know, we’re weird, stupid and lazy, which is what I got called, has now been replaced by sped kids, which is short for special ed. Teachers call them sped kids right to their face, and are you going to tell me that hearing sped kid year after year after year is not going to have some kind of long term impact on your mental health?
HR:
What are your thoughts, in general, about neurodiversity at the employer level?
JR:
It really needs to be addressed. People in management and ownership need to take responsibility for training their employees on what neurodiversity is. Make some accommodations if they have to. Believe it or not, I did some research last year for a piece, the average accommodation is between $250 and $300. So it’s not crazy expensive, like you would think it would be. It may just be somebody having to work in a quiet corner of the office, or being allowed to wear headphones when they’re not on the phone. You know, something easy and simple like that?
HR:
Well, I think that’s the way to go. This is my personal preference. That’s the way to go when we go to talk to businesses, to show them why it’ll improve their bottom line to have a good worker to give a few accommodations to.
JR:
Hiring and firing and hiring and retraining is a very expensive deal.
HR:
Absolutely.
JR:
Kicking in $250 or $300 bucks to help your current employee be more productive, way less than that.
HR:
Any final thoughts?
JR:
Final thought would be this – parents, your child is not a broken neurotypical. They are a perfectly formed autistic person, just as they were meant to be. Do not treat them like they’re a poorly formed neurotypical. Celebrate their gifts. Look at what they struggle with, and see if you can find ways to work on that. And if you don’t find somebody, reach out to self-advocates on Facebook and Twitter. You can go to “Not Weird Just Autistic”, to the contact page. It’s there for a reason. Use it. Ask me. You know, I’m happy to help.
HR:
Well, J.R. Reed, it’s been a pleasure.
JR:
It has been.
HR:
Well, thank you, J.R. Reed, for all you doing in self advocacy.
JR:
Thank you.
HR:
Coaching others and spreading the word. Keep up the good work, and thank you so much for your volunteerism at Different Brains.
JR:
You’re quite welcome. I’m happy to. It’s just a blessing to be able to find somebody that will let you get your true thoughts out and tell your story.
