Autism Interview #115: J.R. Reed on Late Diagnosis and Advocating for Adults on the Spectrum

J.R. Reed and Shannon Hughes, co-hosts of the podcast Not Weird, Just Autistic

J.R. Reed is a late-diagnosed autistic blogger and advocate. J.R. currently co-hosts the podcast Not Weird, Just Autistic with fellow advocate Shannon Hughes where their goal is to promote autism acceptance by removing the barriers – practical, ideological, legal, and social – that marginalize and isolate those with autism. This week he shared some of the different facets of his advocacy work.

You were diagnosed later in life than many individuals are today. What led you to pursue a diagnosis as an adult?

Pursuing a diagnosis was important because I knew that I was different from most people. I thought that I was weird (and I probably am), and I was constantly made fun of at work for what I now know to be my autistic traits. Simply wanting an answer to what it was that made me different and why I was different was really my driving factor in seeking a diagnosis.

Is autism advocacy a full-time job for you right now? If so, how did you get to this point professionally (In other words, how did you realize this was what you wanted to do and how did you make it happen?) If not, how do you balance your advocacy work with other professional obligations?

For me, it really is a full-time job, though one that I don’t get paid for. In fact, money goes out of my pocket to pay for website hosting, podcast hosting, as well as any supplies, promotional materials or anything else we may need, including the cost of booths at shows or other places where we can promote autism acceptance.  

I’ve worked as a freelance writer for over twenty years and have been published in many magazines, newspapers, and websites, but my focus now is on autism and mental health. Those are topics that don’t pay, but I do it because I feel the need to advocate for and support the adult autism community. Anyone age 40 or over never had the opportunity to be diagnosed as a child and had the same struggles growing up that both Shannon and I had.

I made it happen because I felt there was a need that wasn’t being filled within the adult autism community. If you’re a child with autism or the parent of a child with autism, there are so many resources out there for you, but there are virtually none for the autistic adult.  

When I was introduced to Shannon through a mutual friend who knew she had the same passions I had, we decided to partner up, and shortly after, we started our Not Weird Just Autistic podcast, which, even though we’re only nine episodes in at this point, is having more success than we had imagined it would.

Did you draw from personal experience when you wrote An Asperger’s Guide To Dating Neurotypicals? Do you have any advice for NTs dating individuals on the spectrum?

I absolutely drew from personal experience when I wrote An Asperger’s Guide to Dating Neurotypicals.  It’s what I learned from bad relationship after bad relationship.  

I analyzed what the common factors were in the breakdown of those relationships and realized that proper communication, respect for each other and their differences, and understanding and true acceptance of the autistic person were key.

All the bad that I’ve been through has helped me with the very successful current relationship that I’m in where we can understand each other, respect each other for who we are, and truly accept each other– flaws and all.

read that you had offered to conduct free training sessions for staff about autism to a local hospital and you were turned down because they said they didn’t need it (even though you know they did need it from personal experience). What do you think the next steps are to advocate for autistic people in this realm? If other advocates are experiencing similar resistance in their local areas, what advice do you have for educating healthcare workers on the fact that they need to be educated on autism?

That’s a tough question to answer because I think that until people truly accept the autism community for who we are, there will always be a lack of respect and a feeling that we don’t matter and that there’s no need to treat us any differently because they won’t see the differences between us and neurotypicals.

It’s really ignorance on the part of the decision-makers, and that’s one reason that Shannon and I stress autism acceptance over autism awareness. Yeah, it’s great to be aware that the autistic community exists, but until people can learn to accept us and understand what makes us different, nothing will change.

What was it like living as an adult without a diagnosis?

It was hell. Constantly feeling like and knowing that you’re different, but not understanding why was the biggest thing for me. A lot of adults on the spectrum are misunderstood, labeled as freaks or weird and many rely on family and the government for support. There’s not a lot of government help out there for autistic adults, and to get any, you really have to fight. 

I think a lot of us also feel stigmatized by the labels people put on us either before or after our diagnosis. Autism is something that most people are aware of, but it’s also something that very few people truly understand. Again, that’s why Shannon and I stress autism acceptance. We need the community as a whole to accept who we are and what we can bring to the table.

We’re unique individuals with unique skill sets and if people took the time to learn about us, I think they would be shocked and amazed at what we can accomplish.

What mistakes do you see well-intentioned neurotypical individuals make?

The biggest mistake I see people make is that they believe we’re all the same, and we’re not. For example, Shannon and I both have Asperger’s (a higher functioning form of autism) but we are very different Aspies. She has her strengths, and I have mine.  

Assuming that because you know someone who is autistic, that everyone else on the spectrum is the same is a huge mistake and one that I think people make without realizing they’re doing it.

What are some important factors to raising a child with a positive autistic identity?

Not being a parent of an autistic child, this one is a bit more difficult, but I would say that you should raise the child to be aware of their autism and to be proud of who they are. If they grow up not being ashamed as children, chances are that as adults they won’t feel ashamed of being autistic.

The other thing I would suggest is that the child knows their triggers and what their limitations are. If they know that, they’re less likely to push themselves past those limits and into situations that will affect them in a negative way.

The more we know about who we are, what our strengths and weaknesses are, and how we can control our triggers to avoid meltdowns is a huge factor in living a happy and fulfilling life on the spectrum.

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