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  • Community Contributor

The #ActuallyAutistic Culture and Identity Project S27

Name, and/or twitter handle: J,R, Reed @nwjautistic

Pronouns: he/him/bro/dude/hey you

Parent/non-parent:Self-Advocate

Age when you selfdx/were diagnosed autistic: 45

1. Did you feel you were different from others as a child?

I felt very different, and I couldn’t figure out why. My teachers called me, “Weird, stupid, and lazy.” They also told me I couldn’t reach my full potential. Classmates were a little more colorful in their descriptions.

I was autistic, but kids didn’t start getting diagnosed with autism until more than a decade after I graduated high school. I was autistic before autism as we knew it, existed.

2. Are your parents supportive of you as an autistic individual?

My dad passed away a decade before I was diagnosed at age 45. I know he would have been very supportive of me, and I wish he was around for the diagnosis.

My mom tries to be supportive, but as someone who was raised in a town of 300, including the outlying farms, she has had a hard time with it. I believe that she blames herself for me being on the spectrum, even though I’ve told her hundreds of times that no one is to blame. I think that when I told her, all the Refrigerator Mom stuff from the 1950s-70s got in her head, and she blamed herself for my being autistic.

3. How did you determine your ethical system?

My parents were religious, and both came from small Midwest towns, so, even though I was raised most of my life in the Los Angeles area, I was raised with the values my parents were raised with.

Also remember that I hadn’t been diagnosed with autism, so I was forced into a neurotypical mold, even though I wasn’t neurotypical. I had to figure out my values, along with a reason I was odd, or different from others.

4. In which way does your private self differ from your outward facing front?

Since my job is being an autism self-advocate who writes, speaks, and podcasts, the vast majority of my life is on display for the world to see. I talk openly about what it was like to grow up without a spectrum to be on, and about the struggles of living an autistic life today, both the good, and the bad.

The sad thing is that even though I talk a lot about my struggles with depression, and anxiety, there’s more I could share about both those subjects, but it hurts too much to even think about, much less formulate into words.

5. Do you enjoy finding mistakes/errors in the production of films and television...continuity etc.?

Do I, “enjoy,” finding the multitude of errors I find in the media? I don’t know that I enjoy it, but I talk out loud to the TV, and to my computer monitor. I say things like, “Really? That’s the best you could come up with?” Or, “Uh…dude wasn’t wearing glasses a moment ago. Where the hell did they come from?”

I also overuse the phrase, “Someone got paid to come up with that, and that’s the best they could come up with? I’ve got a computer. I know how to write. I could produce better content for half the price.”

6. What are the top 3 traits you look for in a friend?

Honesty. If I can’t trust you, then I don’t need you as a friend. I’ve been burned too many times, and I need to know that you will have my back like I have yours.

Understanding. I’m going to screw up and read a social situation the wrong way. It’s going to happen, it’s just a matter of time. I need a friend who will understand that what came out of my mouth wasn’t necessarily what was up in my head. They need to understand that when I say or do something stupid, it wasn’t intentional, and I have a good heart along with the best of intentions.

Good communicator. We need to be able to find or create a common, “language,” between us so that we can communicate our thoughts, ideas, and feelings. If we can’t communicate, than what good is the friendship?

7. What are the top 3 traits you perceive as negative but are willing to overlook in a friend?

Being (kinda) late. As someone who is literal, logical, and factual, I have to be on time. As long as you don’t make me wait too long, we’re cool.

I’m honestly stumped. I’ve been sitting her for half an hour and I come up with a negative trait, and I say to myself, “they would never make the cut.” If I saw the negative traits, I’d probably keep walking. I’ve been burned too many times by too many people. Now, I’m very picky

8. What are the top traits you look for in a partner/traits your partner possesses?

Obviously,

the traits I look for in a friend. Because friendship should be at the heart of every serious relationship

Someone who, “gets me.” Someone who can handle my quirks and oddities and not only acceptsthem as part of me, but who can find the silver lining in things.

Chemistry. You don’t know where the relationship road will end, but at the start there could be bumpy patches, and relationships can explode. I want someone that has my back and is willing to stick around that.

9. What would you do with your life if you had unlimited funds?

The same thing I’m doing now, only on a much larger scale. I advocate, speak, and write not for fame, but for that one person out there who needs to hear what I have to say or read what I wrote. I’m in this to help others, but also to help myself have a better understanding of who I am, why I’m the way I am, and to learn more about Neurodiversity, and how it can change society as a whole.

10. What does freedom mean to you. What does it entail?

Freedom to me is the ability to live the life you want to. I want to do enjoy my life with my significant other and friends.

Freedom doesn’t mean living in a group home and working at the sheltered workshop. It means NOT having to sign out, and about being told who you can and can’t see. And finally, it’s about supported decision making over guardianship.

11. What does success mean to you?

Man. This is getting good. We’re asking the real-life autistic questions now.

To me, success means that I can live a happy life without being stressed or anxious. Anxiety, in me, is my worst, and most serious condition related to autism. How is it related to autism? An overwhelming percent of autistic men and woman, boys and girls, say that their anxiety started in school when the were bullied, rejected, or were on the wrong end of an elaborate prank.

12. Are you more stable/happier/productive within the structure of a relationship...partner/good friend/long-term roommate?

Absolutely. I spend a lot of time alone, and it’s nice to know that I’ve got a bond with someone special. The reality, however, is that on almost every occasion, as soon as a woman I’m interested in hears the “A” word, autism or autistic, they ghost me and bolt. Luckily,

I recently found someone who gets me and isn’t at all afraid of autism. We’re taking it one day at a time.

People fear what they don’t understand, and too many people don’t understand or don’t want to understand what it is to be autistic. I recently met a woman and she immediately understood the quirks and oddities that come along with having autism.

Success is being able to comfortably take care of my family. Not a lot, but the ability to take a small vacation every year would be nice.

And, in my case, it’s meeting someone that says, “That helped my son or daughter,” Or. “What you said about XXX really got me thinking about that. Thanks.”

To me it’s not personal accolades or anything. If every piece that I write or anything I say while in the role of Self-Advocate. If one person says that affected or helped them in some way, I did my job well enough. It’s about helping people and dropping knowledge.

13. Do you find it stressful to be around other parents at school functions?

My daughter is 24 now, but yes, I found it extremely stressful. I did NOT want to go to the majority of her events when she was growing up, but I had full custody of her from the time she was five, so I didn’t have a choice. I had to suck it up and do it for her.

14. How often do you pretend to not see people you know if you don’t want to talk?

Not that often.

Yes, I live in a town of 4,000, you don’t necessarily see everyone. I know a guy, who is convinced that he owns the town. We were friends for about 6 months and one day he got tired of my quirks and handed me a 24-item list of why he could no longer be friends with me. He was even nice enough to let me keep the paper. He and I like to go to the same coffee place. He’s there every day. And I only go a couple of times a month.

He’s usually there until around until 11 am and returns around 6 or 7. If I’m stuck, going there and just sitting around relaxing, sometimes jumpstarts the brain. So, I know if I go in from 12-6 I’ve probably avoided him.

15. In which areas do you identify the most with other autistic people?

Definitely with some of the social deficits most of us have, and some small processing issues.

16. What are the most stressful aspects of parenting an autistic child as an autistic caregiver?

As I don’t have a child on the spectrum, I don’t know for sure. I would imagine that it’s keeping up with getting to know your child and finding the best solutions to help them.

17. What are the top 5 things you want your children to know about the world and why?

Everyone is different, and different is absolutely OK.

If you’re on the spectrum, parents need to begin preparing their child for life after high school.

The world is unfair, and we need to realize that we won’t always be treated fairly.

People will be cruel, and most times it’s because you’re different and that scares them. People fear what they don’t understand.

The world needs to hear our autistic stories to help overcome the stigma that surrounds autism.

18. Does living off the grid appeal to you and why/why not?

Though I absolutely do not live off the grid, I feel like I am. Four years ago, I moved from the heart of Los Angeles/Orange County and moved to a town of 4,000 in the Missouri Ozarks. I did it mainly to escape the overwhelming sensory overload that I was drowning in.

Now I live in a log cabin, with my service dog, a black lab mix named Tye who was found at 6 months old in a garbage bag in a dumpster. I tend to keep a low profile and get my errands done and get back home.

19. What is your favorite style of architecture and why?

I was raised by the beach, so nothing would make me happier to have a place on a remote stretch of beach, where I could listen to music as loud as I wanted to, could write in a peaceful, mostly stress-free environment, and where Tye could run around as much as he wanted to, but would probably have his favorite spot in the sand to go lay in all day long.

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