Surviving the diagnosis

updated on 3/1/08 8:23AM
Here were my thoughts of the email I received:

We have lots of theories of why The Hub "survived" without a diagnosis. For one, he has a very tolerant and patient mother. Also, he attended a private Catholic school where every student basically has an IEP except the program was called IGE (Individually Guided Education). When he was in the 1st grade he tricked his mom into believing that he had to read 3rd grade level books for homework (Now who lies about doing extra, and extra hard homework??). But each student has their own set of educational goals and the ratios were small enough that each student receive a fair amount of one on one attention.

He has always had sensory issues both seeking and defensiveness, especially tactile and auditory. He loves to rub his feet on the carpet still. I tried it once and said that does feel good, and he looks at me like, See? I told you!

As far as socially, he has the same friends he did when he was in kindergarten to this day he keeps up with all 3 of them, even though one isn't even in the US any more. He is pretty loyal (or routine? - no offense to his friends...). Once he was in college he joined a fraternity at the bidding of a friend. That experience did much to expand his social skills. Lots of trial and error opportunities there to populate his database of what not to do. Luckily he's so darn cute and witty and charming that on the occasions that maybe he could have handled a social situation better, he was forgiven.... or forgotten if they weren't sober enough to remember the diss.

And then of course, the theory that he met me. Ha ha! Just kidding. Well, kinda. Seriously, I'm just as quirky as he is and honestly I kinda liked the fact that he did not care one bit what I thought about him, and vice versa. I knew that I could be myself with him without the fear of being judged and demeaned. I loved that he wasn't afraid to sing to me. I come from a very musical family and that did not intimidate him at all. In fact, he even knows he can't carry a tune in a bucket but he will sing his heart out to in front of me. I loved that he would take over the conversation and go on and on and on about vectors and soccer and nuclear nerdy stuff. Yes I thought that was endearing and different because I was so used to putting my brain on pause for social situations. I fell in love with every Aspergian trait that he didn't hide.

So how did the diagnosis become a sigh of relief??? How did it practically save our marriage? Because I learned some simple yet huge lessons on how to deal with him. Every thing that we had ever fought about could be traced to an Aspergian source. As we advanced in our social status from boyfriend/girlfriend to fiancee to spouse to parents to parents with special needs kids, we were getting into unbroken ground and his database of what not to do did not carry enough data for us to survive all the changes (mind you it was about a 7 year span). The Aspergian traits that I didn't fall in love with started to come out of hiding. To the point there were less times of the day when I was madly in love with him. I don't say that lightly. There are times even today that all I have to do is look at him and he will do something so innocently that it brings me back to day one. (There I go again being a big cheesehead...Go Packers!)

How we "Survived" the Diagnosis...

There were times that I would go OVER the top just to get a reaction from Mr. Roboto.
I mean I would suggest things WAAAYY out there to try to "get" him to realize how he was driving me crazy, without actually outright saying that I was frustrated with him. I probably know I said some very hurtful and damaging things to him when he didn't "get" it. Luckily he has a terrible memory so perhaps it was not long-term damage, I hope...

Now, I am sorta of on autopilot that whenever I get a tinged of annoyance at his reaction or non-reaction to something. Instead of blowing up, I ask myself, "so what led to this?" I can even ask him that if he is present because he accepts his diagnosis and he is a smart thinking adult who is a master of logic. Like if I asked if he could do me a favor and he pauses and then says, OK. I might say, "OK I don't mind doing that or OK if I have to I will?" Or I might follow up my request with "I need you to do that as soon as you can" or "I'm not in a hurry for that" or "It's ok to say no" (I don't say that one alot!).

Lesson #1: Don't assume anything. Be frank and specific and ask questions to clarify.

There were times when I wondered if he even knew that I existed or wondered if he would miss me if something were to happen to me on the way home. He didn't do things like, tell me good-bye before he left for work, tell me that he loved me, acknowledge me when I came home from work, etc. I went years of feeling neglected until I finally said, "what would you think if something terrible would happen to me and you didn't kiss me good-bye or tell me you loved me?" He was mortified. Now when I see him do something that I don't care for or not do something I'd like him to do, I tell him right then. If I wait until I "cool off," he is thrown off guard and anxiety levels make him focus on the "off-guard" part, and not the solution. But hey, now he hugs and kisses me everyday before he goes to work and calls me on his way home (creature of habit).

Lesson #2: Don't wait until you explode later, blow up now and get it over with.
(ha! JK, it is better to confront in a calm voice. Blowing up just triggers the "off-guard" part which is what we want to avoid.)

There were times when I would be insanely jealous of the amount of time he would spend on things that contributed nothing to the bigger picture for our family. After almost 12 years of marriage and 2 kids, that gets old. Nothing wrong with living in the moment, but since I struggle with executive functioning myself, it was very frustrating because I was the only one who could communicate that with words. I felt like I was left to worry, think, plan all the important stuff and he got to do all the fun stuff. Now I know that he did those things because he was thinking about it at the moment. Not because they held a higher priority.

Lesson #3: Don't be afraid to help him re-prioritize his tasks.

My love language is Quality Time, and his is Acts of Service. So you know that Aspergian trait of PASSION? Geez, the dude does everything for everyone with a smile and willing heart. What's not to love about that? I LOVE that about him. But most of that requires him being a little busy bee, and none of it require sitting still to engage in a meaningful conversation with your wife. That actually sounds like a nightmare to an Aspergian. So somehow we had to make it a part of his know that need for we blocked off the calendar for a weekly date night.

Lesson #4: Put necessary things, events in his routine.

There are lots more I could talk about, but they would all fall under one of these general lessons. It all sounds so very corporate, but it works. There is a lot of delegation, supervision, incentives, etc. But we don't lack the fun and spontaneity and emotion that corporate does though. So much of this applies to how we handle our children and we don't think to use the same strategies with adults, especially with "mild" cases, it is so easy to assume things. The Hub is truly an amazing person when I think about what he has to do daily to appear "normal," something that most people would take for granted. So when people are shocked to find out that The Hub has Aspergers...what a compliment!

6 Responses to "Surviving the diagnosis"

Niksmom (visit their site)

Jenn, this was so incredibly valuable for me to read. I think I've mentioned to you before that I wonder if my husband is somewhere on the spectrum (no dx/diagnosis ever made); I mean, here's a total science geek who put himself through school for two degrees in Engineering and thrives on routine and predictability. Even gone back to school---in science---and thriving there. I had to laugh when I read about the saying goodbye, kiss before work, etc...TOTALLY my husband if I let him get away with it! LOL

I try to do many of the things you mention but I think I don't do it consistently enough---maybe b/c of no dx? I slip into thinking and expecting him to respond in a way I might in situations. When I do that is when I get angry, frustrated, etc. When I remember his differences...things are soooo much easier! Thanks for this wonderful post!

~Miss Nelson (visit their site)

This is hands down my favorite post of the day! I am happy that you have practical hints for parents(don't assume, don't wait, don't be afraid, routine routine routine.. ) I can't stress those enough.

Thank you for sharing this information. On a side, I just wanted to let you know that you have been selected for The Royal Banana Yummy Blogger Award. Come on over and collect your reward!

tulipmom (visit their site)

It's so true. We don't "think to use the same strategies with adults." I am constantly having to remind myself ...

Thanks Jen for this very helpful and timely post.

Jen P (visit their site)

Niksmom, Miss Nelson, Tulipmom,

I'm glad that you all appreciate this post. It was originally a part of the Pete's sake post but it got so long that I decided to make it a separate post. I don't say enough about us as far as strategy goes and I think we are finally in a place where we can look back and say, wow look how far we've come, without getting in a fight over it! Ha!

Susan (visit their site)

Lovely. Just lovely. I can feel the love!

Anonymous (visit their site)