An Overdue Apology

Shortly after the first time I was published in our local newspaper, The Register Guard, I was contacted by a woman whom we'll call Mary. She was impressed by what I had written, and wanted to meet me. She also wanted me to meet her son, we'll call him Jim, who is also autistic.

Mary is friendly and outgoing. She came across as a caring and open-minded mother. I might also add generous (thanks again for lunch, if you're reading this). Jim seemed kind of shy, but not at all unfriendly. He's independent, and one of the autistic people lucky enough to have found a steady job.

Overall, I thought it was a fun meeting. Although, I feel like I owe Jim an apology.

Naturally, most of our conversation centered around the subjects of autism and the autism community. As you may know from reading my writings, I have a lot to say about that, and I can get rather passionate about it. That may not have been a problem in a less public space.

I'm pretty open about my own autism. Of course, I don't tell every single person I meet. There are a couple of reasons. The most obvious is that I don't want to spend that much time explaining what it means. The other is that I do notice that people tend to treat me differently depending on whether I tell them I'm autistic right away, or if I give them a chance to get to know me first. By and large, though, I don't feel as though I should have to hide that I'm autistic.

Jim, on the other hand, takes a very different view. Mary was telling me that he's somewhat embarrassed by his diagnosis, which I should have noticed while we were talking. My understanding is that he doesn't share it with his friends and coworkers, for fear of being judged.

The thing is Jim's fears aren't entirely unfounded. In my experience, most Millennials and many Gen Xers tend to be willing to see autism as it is when it's presented to them. However, many people still think of Dustin Hoffman's Rainman when they hear autism. It can be frustrating trying to show someone that you're not stupid, while simultaneously telling them to do their own math.

Other people will sometimes appoint themselves as social skills teachers. While this can be appropriate coming from parents, teachers, caregivers, and significant others, it's probably best left alone by friends and coworkers. A lot of people often get the lessons wrong, and even if it's correct, it can still feel demeaning.

Even worse is when a person, who may be otherwise respectful and open-minded, takes the knowledge that a friend of their's is autistic as permission to share it with anyone they choose. This then extends the problems with disclosing to people that you may not be aware know about your diagnosis. I try to remember now to tell people that I want to be the one to choose when and how to disclose to others.

Being openly autistic, I choose to take these risks along with it. My goal in doing so is to create a world in which people like Jim do not need to worry about being treated differently. However, as things are now, Jim should have a right to choose not to take those same risks that I do.

To be honest, most of the autistic people I know are comfortable with their autism, and at least marginally comfortable sharing it with others. Of those who aren't, either autism is not normally the topic of conversation when I'm with them or we're surrounded by members of the autism community. Further, I consider it a failure on my part if the majority of the neuronormal people I know don't have a positive and accurate view of autism.

Because of the environment I've created for myself, I sometimes forget that others are uncomfortable with being autistic. I'll try to be more sensitive to that in the future.

Jim, even though I've changed your name here, I trust you know who you are. I hope you accept my apology.

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Update: "Mary" sent me the following response, which was intended as a comment, but exceeded the character limit. I would like to post it here:

DAVID .... Sorry it took me a few days to respond, but I've never "blogged" before.  (Smile).  

It was compassionate and generous of you to offer your apology, but heavens, one surely was not needed!   You did nothing at all to apologize for.

When I saw your great articles about autism in the Register Guard, I was inspired to contact and meet you -- as outside of my son (whom we are calling "Jim" here), I've never met an autistic person who is functioning out there as "normal" in the real world.  I thought it would be good for Jim to meet someone similar to himself -- as although he functions in the world with no apparent handicap, he goes through a lot of stress trying to piece together and understand conversations.  (An autistic brain thing, most likely).  This causes him great angst at work.~

Jim works for a large lumber mill running a machine, and has held this job for almost 15 years.  He interviewed for and got the job totally by himself, and no one there knows of his autism -- although some probably view him as a bit "different." 

Jim was diagnosed as "clasically autistic" at age 4, and didn't have meaningful speech until age 7.  Fortunately, there was no retardation. 

I wrote to Dr. Bernard Rimland (the "father of autism") back in the 60's for help, as no definitive help existed out there.  He referred us to work with Dr. Ivar Lovaas at UCLA (renown at the time), and through many wonderful people and relentless hard work, Jim improved each year.  (Too lengthy to go into here, but David Olson has my "story" about Jim detailing much of this).

Jim is now 52, has had his steady job at the mill for 14+ years, owns his own home, drives his car(s), and for all practical purposes is integrated successfully into society.  He has never married (oh, the heartbreaks and rejections I've gone through with him~), but am happy to report that he has now been in an exclusive "relationship" for over 5 years. 

For about 25 years (mid 20's to late 40's), Jim was plagued with panic attack type "melt-downs", mostly out in public, when he experienced "information overload."  These manifested in seizure-type episodes, and so many times ambulances were called.  These were so stressful for both of us!   By the miracle of Jim's inner strength and fierce resolve to overcome, I'm happy to report that he has actually "trained his brain" not to have these -- and instead he covers his mouth, takes deep breaths, and walks away from the perceived stress.  David, this is what you saw the day the 3 of us met for lunch -- smile.  We were seated outside next to other folks, and Jim could see they were listening to our conversation about autism (including his).  He was mortified about this for various reasons.

First, he still carries the stigma of going to elementary school (to Special Ed class) on what kids called "the retard bus."  He learned back then that if he was to be accepted (instead of taunted) by his peers, he needed to be like they appeared to be -- "normal."  

Fast forward ahead to when he got his job at the mill over 14 years ago.  Again, they never would have hired him (risky machinery to work around, etc.), had they known he was afflicted with a malady of any type.  So for all these reasons, Jim must remain "underground" about the autism.

One of the reasons I loved the articles you wrote, David, is because you are directly addressing autism and educating the public (however long it takes them~) about this little understood malady.  I doubt if the "good ole boys" at the mill would really "get it" and show any tolerance at this point in time -- but it's people like you (ha, if there are any, David!) who are on the ground swell and leading the way for the rest of us. 

With efforts like yours, we're hopefully working toward a more tolerant and informed society.  Keep up your wonderful work!

In appreciation, "Mary" (ficticious name) -- "Jim's" mom