Autism Interview #188: Bart Shoaf on Late Diagnosis, Therapy, and Advocacy

Bart is a husband, father, grandfather from North Carolina. He has worked both in ministry, and in Continuous Improvement, both in food manufacturing and now in the printing industry.  He blogs at ManualTransmissionAutism.com.

Bart struggled for years with anxiety, social skills, and sleep disorders and was not diagnosed with Autism Spectrum Disorder until his mid 50s. This diagnosis, although painful and confusing at first, has given him a lot of understanding about why he acts and reacts certain ways. He is now on the journey to find “autism life hacks” and hopes to share these with others along the way.

When did you receive an autism diagnosis? How did that come about?

My wife and I were very frustrated with my communication, memory, and executive function skills. I was having a hard time making any good decisions. I think I had a good mix of anxiety and depression, but since I had had a neurological diagnosis with sleep disorders in years past, my wife wanted me to get checked out for something in the brain. About 4 years ago, I submitted to a neuro-psychological evaluation and battery of tests. I was wondering if I had early onset Alzheimer’s, or even Parkinson’s and was very surprised when the results showed that I was on the Autism spectrum. It took a while for it to sink in.

Tell me about your blog. What inspired you to start it? What do you hope readers gain from it?

ManualTransmissionAutism.com is my attempt to challenge myself, use some of the skills I have, and hopefully bless a portion of the autism community who may or may not have similar challenges. I began to see myself as unique, and then when I got a unique automobile – the idea just clicked. I’m sharing my experiences, my struggles, and therapies and autism life hacks that I find along the way.

You wrote a recent post on neurofeedback therapy and that while the goal wasn’t to “heal” your autism, it improved your thinking, anxiety, and executive function. If you’re comfortable, can you share a little about your decisions as a family to seek therapy, educate about autism, make accommodations, etc.?

My wife has been the primary motivator for my initial attempts at any kind of treatment. She scoured the internet for any local counselor or therapists who would work with autistic adults. There were many who worked with kids, but she did find one who would accept an adult. I had some benefits through health insurance, so we started there.

What therapists are covered? After working with my PCP to begin this journey, and trying and then rejecting one attempt at medication (with the doctor’s approval), we ventured into neurofeedback with the counselor. I cover this part of the journey in my post. I also visited a local support group for adults, but didn’t feel comfortable there. Funny thing, though, I met a guy at that one support group visit who had too many characteristics in common with me to not get to know him better. We visited another group out of town, and that worked great for us.

Most of my education about autism has been via this support group, reading books, and getting involved in the general autism community.

I usually don’t need any accommodations, maybe just a little patience.

How do you handle disclosure at work? Among friends?

I’ve been telling friends since a few months after the diagnosis. I try to give them the short story, and then answer their questions. I did not disclose at work, at least not directly. Once I started blogging about 6 months ago, my supervisor dove in and read everything, but handled it all like a champ and never treated me any different. Just having accepted an offer with a new company, so I’ll have this challenge again soon.

Can you give an example either in school, at work, or anywhere in society of a peer/teacher/employer, institution etc. who acted in a way to attempt inclusivity, but ended up not being very inclusive?

I have felt un-included many times. Usually if I am included, it is authentic. Immediately after the diagnosis, there were a couple of people who wanted to keep doing things the same way as before. But, I needed change. Apparently, the relationships weren’t as healthy as I thought, because these few friends needed things to stay the same, i.e., on their agenda. I don’t see these people regularly any more.

What are you most passionate about? (and/or when are you happiest?)

I like to see lives change for the better. My Christian faith is a place where this happens the most, but even seeing a movie where someone has a personal victory is inspiring to me. I am now a grandparent, and my grandchildren are a huge source of joy for me. I’m hoping to grow in my ability to advocate for the autistic community.ˋ

Is there anything else you’d like to share that I didn’t discuss?

My family has been a huge source of support and encouragement for me through this journey. I realize other adults on the spectrum may not have this advantage, but it has made all the difference for me.

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