I knew there was something different about my husband (Tony) on our first date. By the time the date was over, it was also clear that whatever it was that made him different, it had gone unacknowledged and without diagnosis for all of his 49 years. But I could also see that whatever it was that made him different had also given him a kind heart and an extraordinary amount of patience. These qualities, coupled with the fact that he has a bachelor’s degree (proving that he’s no dummy), led me to agree to a second date.
People like Tony have most often gone down in history without any sort of acknowledgement. They have either been ignored or isolated so as not to cause embarrassment. Those with more severe symptoms were institutionalized and considered insane. In fact, it was the outward appearance of Tony’s disability that nearly caused me to end the relationship on several occasions before I finally agreed to marry him.
I put up with, or ignored, most of Tony’s irregularities for several years into our marriage. Occasionally, I would even think about asking him to get a formal diagnosis, but he was just fine with himself the way he is, and I had fallen into a routine of putting up with it. That is, until we rented the movie, Rain Man.
We talked about it a bit after the movie and came up with several shared characteristics, but Tony was reluctant to think of himself that way because the Rain Man (Raymond Babbit) had been institutionalized to keep others safe from his unexpected anti-social behaviors. But Babbit was also a savant; he had an extraordinary memory. We might have even discussed it in the days and weeks following. I do know I thought about it. I asked Tony, “Do you think you might be Austistic, you know, like the Rain Man?” We started talking about it and I said I thought Babbit was an extreme version of what I saw in Tony, but I had seen a whole lot of similarities.
Tony agreed, and that was the end of it for him. From that point, I thought even more often about trying to get him to agree to a formal diagnosis. But whenever I brought it up, Tony would say, “I probably am autistic, but what good would a diagnosis do?” So I let it go. That is, until I met Claire.
I met Claire in my LDS ward after we moved to Kentucky. We get together occasionally for a short walk or chat. The first day we talked, Claire told me about her son whom she had recently identified as high-functioning autistic using DSM-5 criteria. So I looked it up.
That evening, we went over the criteria, I read it aloud; Tony responded, “Yep. Yep. Yep.” And for Tony, that was it.
DSM-5 criteria for adults is divided into five categories which are further subdivided into sub-categories. Autistic behaviors must be present in all of the main categories for a positive diagnosis. Here’s how it breaks down for Tony:
- Persistent deficits in social communication and social interaction across multiple contexts. (Diagnosis requires person meets all three criteria.)
- Verbal and physical cues are often ignored in social situations. Tony is not self-centered, and he hates the idea of hurting anyone, but he will always be more focused on what he is trying to say in a conversation than listening to the other speaker. If I try to get my piece in before he is finished, he won’t recognize that I said anything. Even then, I have to repeat what he said back to him, before I can respond. Sometimes I need to remind him of my response two or three times before he will process it. Telephone conversations? Fuhgeddaboudit. If it’s important, I send a text.
- He talks too loud. When he is nervous, he talks even louder. In fact, I didn’t think he even knew how to whisper for several years. He does much better now, but I still have to remind him in church or at the library.
- Tony spends most of his free time away from people. At home he interacts with the family for about twenty minutes, and then he just “disappears.” The man-cave thing is much more pronounced for him. He spends hours alone in the bedroom, often just sitting with the lights off.
- At work, he avoids situations requiring supervisory or management skills. He’s fine working as part of a team, but will always avoid taking the lead and waits for specific instructions instead of taking initiative. It’s not because he can’t, it’s because he doesn’t understand social-behavioral cues, making him extremely uncomfortable when asked to take a leadership position.
- Restricted, repetitive patterns of behavior, interests, or activities. Diagnosis requires person meets at least two of four criteria, but I think Tony meets all four in about a hundred different ways. Okay, I’m exaggerating, but this particular set of criteria is extremely pronounced in Tony’s life. Examples:
- Echolalia: It’s a cool word to describe Tony’s; continuous repetition of sounds, words, or phrases once he’s ended his part of the conversation. He usually just walks off muttering the same word or phrase over and over again.
- Greater than expected degree of distress with changes in routines or expectations: We have moved several times in the past ten years, but the first big move from Illinois to Utah was so hard for him that it almost caused a divorce. Now we have become accustomed to Tony’s extreme need for home and routine to be established as quickly as possible after a move.
- I have had to learn to take the initiative to get him to perform simple activities like finding the grocery store and gas station, and even using the transit system for the first time. If he needs to drive, I must come with him and have him drive the route at least twice before he is okay with attempting it alone.
- He must perform daily rituals the same way each time, which includes using shampoo on his freshly shaved head every day when showering. He did it when he had hair, so it must be done now.
- I have learned to not share the bathroom with him, but to give it up completely for a full 45 minutes on a daily basis, or his day is completely ruined. Except on Saturdays. It’s the one day when he doesn’t begin the day with a shower. He has his rituals, and they must not be interrupted. Fortunately, he only needs about fifteen minutes to get ready for bed.
- Intense special interests–this one’s the hardest for me to understand.
- He talks incessantly of the need for a standard transmission in any car he drives, and cannot understand anyone’s preference for automatics. We once bought a car with an automatic transmission. It was a great car, but he constantly talked about getting a mechanic who would be willing to remove the automatic transmission and replace it with a standard, essentially ruining a perfectly good car. If I had a dollar for the many times I’ve heard, “Get a stick!” I wouldn’t need Go Fund Me to get to Austria.
- He loves the Andy Griffith show and can tell you just about anything you want to know about the actors and characters on the show. He watches reruns almost daily, often the same episode where Barney joins the town choir and ends up singing “so-low” (so low he’s actually lip-syncing for another singer).
- He has nearly memorized the schedules of each bus route he uses of the Northern Kentucky public transportation system, but can’t tell you anything about the purpose of Stories From the Past, or why I’m going to Austria.
- He collects bus schedules, old receipts, old mail, and maps (including atlases and Google Maps printouts), keeping them all in drawers while using a bucket for his clothes (because his drawers are full of his “collections”).
- He also collects baseball caps, random coins and Chicago Bears memorabilia, but I can easily put those into hobby categories. I mean, my ex-husband collects matchbox cars, and my dad collects coins too.
- And then there’s the giant jars he tried to keep for pennies. He put a handful of coins in the jar and then deposited them in the bank the next week. Although I gave him several smaller containers more appropriate for his handful of coins, he would look for a much bigger container, and stash the smaller one away. I threw several of his big jars away, and even most of the smaller ones, but he would just hide them from me. That was until we found a piece of Bears memorabilia in a local antiques shop: a great-big football shaped bank that was probably sold with popcorn in it. The bank is nearly gallon-sized and fits in well with all of his other bear-memorabilia, so now I don’t have to keep trashing his stash of jars. The bank is never full, but it’s well-used and only takes up space as decoration. I can accept that.
- His strangest collection is not random papers or jars but bank accounts. A couple of months ago, we had a huge argument over his opening a FIFTH bank account. We have our joint account, and each of us have personal accounts, but Tony had three others, and kept saying he wanted more, because they’re “cool.” He had less than 20 bucks in each of his four individual accounts, and was keeping one simply because he’d had it since he was a kid. But that one account was forcing him to spend money five times a month in order to avoid a monthly surcharge which was less than he was spending to keep it, not to mention that he was making tiny deposits every Saturday so he could use the account to fund his Diet Pepsi habit for the next week. After we both calmed down, he finally agreed to close that account and one other that he wasn’t even using. Now he has accounts in three different banks/credit unions. One is our joint account, another he uses for spending (it only allows cards–no checks, and he likes that), and the third is a savings account. I can live with that.
- He is often confused and/or overwhelmed by sensory stimuli. Holidays are particularly tough. He’d rather take his plate and sit alone in an empty room (usually the bedroom), than try to sort out the commotion of conversations, children playing, movies on the television, and food preparation, especially when guests are over.
- Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)
- I can’t answer for this one, as I did not meet Tony until later in his life, but I do know that a change in circumstances will disrupt his coping strategies and make characteristics more pronounced. When he is relaxed and among familiar things and people, many of his socially affective characteristics are easier to manage and become less obvious.
- Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
- There is a significant mismatch between his educational attainment and occupational history. Tony has a bachelor’s degree in graphic arts, but has spent most of his occupational career in shipping and receiving.
- One of his biggest difficulties at work is in leaving dead-end jobs and finding better employment. He nearly always waits until he is laid-off or until temporary employment comes to an end before looking for another job, even if that employment is unsteady, unreliable, and/or inequitable. When he is job-searching, he will always take the first job offered; no negotiation, and no questions asked.
- His social life is extremely limited to family and just a couple of friends he has known since childhood. Everyone else, to him, are “mere acquaintances,” having nothing to do with him.
- These disturbances are not better explained by intellectual disability or global developmental delay.
- After considering the DSM-5 criteria in Tony’s life, I can’t think of any other possible explanation.
Of course, I am certainly not a mental health professional, and I would find more comfort in getting a professional diagnosis, but knowing that my husband fits “like a glove” into the DSM-5 criteria for adults with autism is very helpful to me. I think it can also be helpful for co-workers, and other acquaintances. It helps me to be more accepting of odd behaviors which can often be maddening, and I can find better ways to cope than getting angry. As for Tony, it doesn’t change a thing. It’s part of who he is. He’s lived with it for 60 years without a diagnosis, and he doesn’t see the need to compartmentalize himself or his behaviors. I agree. It works for him, and I just need to work with it.