The Two Halves of Aspergers

I always feel like I’m coming to a better understanding of the autism spectrum, though it seems to be taking years.

I don’t write much, but I think a lot. I’d taken fascination with a book about how the mind is more than the brain, and how much it relies on environment. I searched and searched for further reading, but I didn’t know what direction I was trying to go.

In searching for resources on Aspergers, furthering this idea of an “unorganized nervous system,” I landed on sensory integration and sensory processing disorder. Perhaps it took me this long to land there because every source of information on these things is completely focused on kids. (I’m glad for early intervention and I hope awareness of this grows even more, but it’s frustrating that adults are an afterthought.) I started reading Too Loud, Too Tight, Too Fast, Too Bright by Sharon Heller – it’s about sensory processing disorder, but since it came out before that official name, she calls it “sensory integration dysfunction” and people who experience it “sensory defensives.” It affects 80% of people on the autism spectrum, so it is a separate condition technically, just deeply intertwined with autism.

I believe this is the other half of Aspergers, the one no one sees or understands, which is why we think of Aspergers being only social awkwardness. This is a devastating misconception. Sensory issues make most life-things overwhelming, yet people who don’t experience this don’t understand that, so they tell “defensives” to get over it. Serious alienation, inability to cope, and emotional dysfunction results. Cognitive behavioral therapy (CBT) is heralded nowadays, but it hasn’t been effective for Gray and I believe it’s ineffective for ASD in general, because of sensory processing issues. Yeah, our thoughts lead to our emotions, but the other side of that is our senses, or bodies, how we FEEL physically also effects our emotions, and more powerfully if you’re sensory defensive because you can’t regulate the world around you or the way you process it.

So given the suggestion that maybe people on the spectrum can’t regulate themselves automatically, things start falling into place:

  • why schedule changes are so hard
  • why meltdowns happen
  • why control over environment is so important
  • why it’s truly not worth it to make him go to social events

And finally, why it’s not good to be idle. It’s tempting, when the world is at once overwhelming and underwhelming, to remove all obstacles. I desperately wanted to do this for Gray (and probably for myself too) in the wake of Oliver’s death, a traumatizing move to Ann Arbor at a crucial point, and a stressful seven months living with grandma. Remove all obstacles. But in doing that, I removed all possibilities for healing, treatment, movement, growth, and meaning. A man so brilliant, believing he can’t accomplish anything meaningful–that’s not okay, not what I wanted or intended.

The more I read, the more I realize how little I know about sensory issues and how to treat them. (But the mere idea that it can be treated has given me an amazing feeling of hope.) It seems to be a pocket of information that only belongs to occupational therapists. It feels, right now, like a secret code you need to figure out on your own, say the right words, call the right people. But I’m not going to give up.

It’s weird, but it feels like my urban planning interest has tied into all of this. Environment really does effect us. We’re not souls in containers, or stand-alone brains. We’re complex systems that overlap with each other and our world, and sometimes vestibular input does help with paranoia. Most of the time, starting the day with exercise and ending it with calm reflection really makes the difference. For everyone, not just the sensory defensive.

Resources

Books

From Anxiety to Meltdown: How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively by Deborah Lipsky

Strategies for Building Successful Relationships with People on the Autism Spectrum: Let’s Relate! by Brian R King

The Complete Guide to Asperger’s Syndrome  by Tony Attwood

Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World by Sharon Heller

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida

A long list of free e-books.

Online communities

Aspergers Subreddit

Autism Subreddit

Aspie Partners Subreddit

Aspie Friends Subreddit

Aspie Mom Support Subreddit

AsperGirls Subreddit

Wrong Planet

West Michigan Organizations

Jenison: The Center for Childhood Development

All Counties: The Arc (“For Children and Adults with Intellectual and Developmental Disabilities”)

Rockford: Autism-Aspergers Associates of Michigan (workshops)

Kalamazoo: LOGAN Autism Learning Center

Blogs

Aspie Strategy

The Artism Spectrum

 

Future Obligations and Noise Sensitivity

I wanted to share some things I’ve learned that have been encouraging for me lately.

  • Gray will often back out of planned events the week of. Weeks before the event, he’ll say “Oh yeah we’re totally going to that.” Then when the event nears, he starts saying “I don’t think I can go to that thing on Saturday.” We figured out that this is because he doesn’t want the pressure of having to go somewhere and do something in the future, when he has no idea how he will be feeling at that time. We have regular social things we go to now, but the agreement is that we don’t commit to going. Usually, at the very last minute, he decides he wants to go and is glad he went afterwards. This provides some spontaneity for me, so it works well.
  • Sometimes he has issues with noise sensitivity, sometimes not. When he’s having trouble, my breathing/chewing is bothersome to him. I’ve learned that this is completely correlated with stress level and his need for alone time. Last time he was sensitive to noise, it was right after we got home from a social thing in the morning. I was doing chores but could tell he was tense and the noises were bothering him. I went shopping for a couple hours, and when I came back he felt loads better. He needed time alone after the social thing to get himself back into balance. He didn’t know it, though.

This is probably the trickiest thing: figuring out the reason and the remedy for issues like this that arise. In my experience, it is not in his ability to figure these out. But once I know, it’s like having another effective tool on my belt.

I like that when when I do figure out his remedy, I can make it work for me. He needs alone time? GREAT! I do too! I can go chill at the coffee shop and read in glorious silence.

Six things I seriously love about my aspie husband

  1. Is entirely truthful. He’s really bad at lying. Even the white lies, the “you don’t look fat in that” lies. I’d hate to have  to second guess all the time if he’s just trying to make me feel better. As if I can’t handle the truth—honest feedback makes me a better person. He’s made me a better person.
  2. Would totally stay with me regardless of physical contact. This is one that bothers me sometimes and amazes me others. That he’d rather talk to me than anything else, that he’d be happy to stay with me even if I didn’t have a physical presence.
  3. No disillusionment. For me, I knew what I was getting from the beginning. There was no honeymoon phase, or blind love. Being married hasn’t revealed a true self that he was hiding, which I think people unintentionally do in romantic relationships sometimes.
  4. Serious discipline and self-responsibility. This guy has looked into the abyss and can handle its returning gaze. He also deals with depression, and I have never met any person, afflicted with these difficulties or issue-free, that has learned to take responsibility and management of their well-being more than he has.
  5. Is entirely genuine. He has never given me flowers or planned a surprise dinner for me. He proposed to me during Family Guy when he was sick, unplanned and out of the blue. He proved with logic on a napkin that I am cute. For me, “romance” just doesn’t work. I hate surprises, hate roses, and mostly hate that a guy thinks if he follows this “romance” program he’s going to get a certain reaction from me.  He is not just doing what he thinks he’s supposed to do.  It might sound weird to some people but that’s really important to me.
  6. Da brains. Undeniable. Smarts is not a must but it’s a plus. We have amazing conversations…whenever I choose to turn his rambles into conversations by interjecting and asking questions. Related to this: hilarity. He has this ability to animate inanimate objects and a Charlie Chaplin command of his body for physical humor on top of the  jokes, self-deprecation, and references that make me laugh multiple times a day. I’m always surprised. He’s always learning more.

Let’s Relate.

Since my last post, we have lost a brother and gained a niece/goddaughter. Things happen fast.

Other things happen slowly. A month ago I found myself on the brink of losing it.( How to I explain all this without outlining the narrative of the last two years? Is it even important? We moved in with Gray’s grandma to be her caretakers. Two days later, Oliver died. Seven months later, we moved to our own place again, closer to my work.) We’ve never had more than a year of stability, but now that we’re getting there, the real challenges of marriage are coming out.  You have to communicate. You just have to. Yet it’s so much easier not to. I’ve taken the easy way out for a long time and kept things to myself.

Making someone else understand how you feel is difficult in itself but with Aspergers involved it can feel impossible. Emotions in other people will trigger panic and stress in someone on the spectrum–it throws off their balance, they may think it’s something they did, and it adds uncertainty for someone already without the ability of regulating their nervous system automatically. So expressing my emotions adds complication to an already-complicated life.  Why should I do that? So I stopped expressing with anybody in my life. I isolated myself. Then I wondered why I had to convince myself to get out of bed in the morning.

I got into a habit of blame and assumption. Blaming my isolation on Gray, assuming he wouldn’t support anything I wanted. It’s the easy way out.  When things got too difficult to bear, I started asking the opposite of before: why am I keeping this a secret?  Who is benefiting from this?

This is a message not only to people related to Spectrumites, but to people who put themselves on the back-burner: Don’t. There is a balance, and you must find it. Giving 100% to another person can be the easy way out and will backfire. Swallow your pride, reach out, and ask for help. It’s the most unselfish thing you can do. If you think your loved ones are just going to leave you in the dust, prove it.

I’m using a different language now when I talk about ASD – I  have seen an ASD specialist and I have been reading. This book – Strategies for Building Successful Relationships with People on the Autism Spectrum: Let’s Relate – is currently blowing my mind. It’s an absolute must-read for …everybody. I did not realize how much I don’t understand what it’s like to be on the spectrum. How taxing life is–and it’s all invisible to the rest of us. Why is this kid having trouble in a cafeteria?  If we could see what was going on inside, no one would ever ask that. Social stimulation can be physically painful. Going to a party can be like running a marathon. I had no idea the extent, and I’ve been with him for 7 years.  What if you suffered this way, didn’t know any different, and had no language or words to describe it? How would you ever get help?

Why do we expect the same things out of every human being when no one processes the world in the same way? Yet we need each other. So we have to bridge the gaps and meet each other halfway. It’s easier to do with social norms and unspoken rules, but some can’t speak that language. They’re worth translating, worth knowing. Gray is maybe the best person I know. Not despite his struggles, nor despite his preferences, opinions, and worldview–but because of everything together that makes him who he is. His social circle is small, but his love is just as immense as anyone else’s. I apologize, Gray, if this bothers you, but it comes from an intention to help other people.

Now that I’m learning more about his needs, I can much more easily understand my own. Now that I’m being honest, I’m learning the hard truth – that he does care for me, support me, help me immensely. That I’m human and make excuses; I’m reluctant to forgive, let go of my ego, and resist the easy way out. So I start by forgiving myself.

Is it contagious???

It’s been a long time since I posted last. Most obvious, inane statement I’ve ever made.

I’ve been in a terrible mood lately. Might have something to do with all the stuff going on with Oliver’s cancer and the stress at work. I have not been hanging out with people, since book club was on hiatus for 3 months (has it been too long for me to have written about book club? Shoot.)

I joined a book club with my aunt-in-law back in September. It has been a good weekly ritual and got me to read books in their entirety again.  It stopped over Christmas, but we just met again last Tuesday and will meet every two weeks now.  I am one of the younger members I guess, but I don’t really think of it that way. I enjoy the other people there. They are smart and strong and interesting. We read a book called The Giant’s House most recently, about a boy with giantism and a lonely librarian who effectively falls in love with him. It reminded me a lot of my falling in love with Gray: it wasn’t sweep-off-your-feet romantic all the time and it involved a lot of realization that my life will never be normal or easy.  But I  couldn’t help falling in love with him and every moment is worth it.

My patience with people has been waning, I think as a result of not having good social time in so long. For neurotypicals, good social time helps refresh their spirits and remind them that not everyone is a mean, neglectful idiot who wants to ruin your life.  I sometimes wonder if I’m assimilating to Gray’s thought patterns towards people, the lack of interest to get to know them. He insists I am not. I guess I am not. Sometimes I feel bad for wanting to be around people because I spend all my time with someone who can’t fathom that desire.

When I was in the process of becoming Catholic, we spent time learning about centering prayer as a daily practice of letting go of your thoughts and, eventually, your own will. This is what drew me to Catholicism–the emphasis on dying to the false self, on constant surrender, on finding peace and new life in the practice of giving up your ego.  IT IS RIDICULOUSLY HARD. And it’s something I’ve ignored ever since Oliver got diagnosed with cancer. I guess I got angry at the notion of surrendering to something so inconceivable as a kid dying.  Honestly, it still makes me angry and I’m still far from being at peace with God about this. But I’m trying.

Gray’s staying busy helping with the family and cleaning the house and writing. He approaches death completely differently than most of us, and in many ways is at peace with this and is able to help take care of things. I’m kind of amazed.

Anyway, the surrendering thing is something that helps with dealing with other people. When we “hang out” with each other, we are constantly surrendering our wills, in little ways, compromising with the common goal of having a harmonious time. When it comes to strangers making me mad, especially on the road since I’ve been commuting every day, it helps to picture them as cartoons. I know that sounds weird, but it’s hard to be mad at the cartoon version of the person that just tailgated you and then cut you off. I’m learning to laugh. It’s a huge act of surrender sometimes.

Why Change a Good Thing?

I’m going to get sick of Burger King!

Every time we go out to eat, that’s where Gray wants to go. It’s fast, delicious, and has self-serve fountain pop with free refills. 

We went there last night after a discussion about our conflicting mindsets. I don’t understand why he’d want to go to the same place and get the same thing every time. He doesn’t understand why I’d not want to!

If the experience is positive, why not repeat it?

Well, wouldn’t you get sick of it?

No.

Wouldn’t the appeal wear off?

No, it’s always good. Dr. Pepper and BK Stackers are always good.

Don’t you want Margaritas (best Mexican restaurant in West Michigan!) sometimes? 

I’d always rather be at Burger King.

I have to admit, I’m not good at explaining why I want variety or what I want instead of Burger King. I just like trying new things. It’s an innate quality in my neurotypical self. I think a lot of people are like that. Right?

What reasons would you give for wanting to try new restaurants even though you already have a favorite?

But as I look back on the years, I realize our rituals change over time. We used to go to the pool a lot. We used to take nature walks. We had a Wendy’s phase. New patterns do get introduced into our life…just more slowly than others’ I guess. 

The Grocery Store

Gray and I went to Meijer the past two Sunday mornings, after I got back from 8:30 mass. It’s really different from last winter, when he’d come with me to Kroger to get groceries and wear his hood over his head to try to block out the stimulation. Grocery stores are difficult because they are unpredictable. People milling about with 79 different agendas. Add a cart to maneuver and it’s a disaster. 

It’s not like moving back to Holland made him able to deal with this stress perfectly. I feel so mean, blaming Ann Arbor for everything. 😛  He is building capacity again. That doesn’t make it easy. It won’t make him “normal.” He’ll just be better at handling the stimuli. 

Rebuilding a Social Life

I got a job. Gray got a job. I have been working full-time for a week. Gray starts tomorrow at the library.  We are relieved and happy to have an income and insurance.  😀

I don’t post on this as much as I expected when I started this, but I can’t realistically post daily about my husband’s Aspergers.  Then I kind of put half my life on hold until I secured employment. I could probably turn daily events into posts, but I have to draw a line somewhere. I feel irrationally afraid of exploiting our relationship and our life. At the same time, I feel isolated sometimes. Isolated from a community I desperately need.

I am introverted. I don’t need constant social contact to be happy, but I need regular, steady, and positive social contact. The books about Asperger marriage always say the neurotypical spouse must have their own social life. It’s not easy for me.

I had a social life when I met Gray, but it was one that was crumbling. It was one based on a projection of who I thought I should be. I was a junior in college, and two of my friends were abroad. I didn’t know what to do on Friday nights. I’d sometimes go across the hall to my friend’s apartment, but always felt ignored there. I listened to Pink Floyd albums in my apartment alone. That semester, I realized I have to be okay being alone before I can have an adequate friend life.

I went to Chicago for a semester, and I couldn’t find a niche there, either. Didn’t fit in. Didn’t fit in back in high school, did not fit in at college. I have good friends from grad school, but I seriously did not fit in there, either. I realize that my “not fitting in” really means I have never been comfortable with who I am. If I were, people would probably accept me.

My relationship with Gray throws a wildcard into things. It makes small talk difficult. I can’t say anything about my life that doesn’t need a lengthy explanation. I can’t explain Aspergers to someone who’s never heard of it and make them understand that I’m not being emotionally abused. There’s an immediate barrier between me and other women because of this. I didn’t have an extravagant proposal, I don’t usually wear a ring, my husband doesn’t go with me to weddings or parties…somehow these facts create barriers.

How am I to make my own social life when making friends was already so difficult? I already did not fit in, then I married someone who is easily misunderstood. I guess that’s why Gray and I get along. We’re both familiar with being misunderstood and know how painful it can be. Sometimes people reject Gray because he’s not how they think he should be. Sometimes I try to be how people think I should be, and fail miserably. We both admit how badly we sometimes want to be normal. It’d be so much easier. If he had a physical disability, it would be more obvious to the world. But Aspergers is complicated. People ask why my husband isn’t at the party with me, and I think “Did you really just ask me that? Taking an Aspie to a party is like taking a blind person to a movie theater.”

Sometimes people I talk to insinuate that I should be treated better, and I start to agree. Why can’t he bring me flowers? Why doesn’t he do what I want to do more? It strains my relationship with Gray. It feels like I can’t have the cake and eat it, too: have a normal social life, or be married to someone with Aspergers. Not both. My marriage is not normal, so it’s not acceptable.

I get angry. I start accusing all people of being intolerant, ignorant, closed-minded, mean, cold-hearted. I don’t know why acceptance is so hard to find, and why I can’t even find it with myself. I wish people would look deeper sometimes, and that I had more patience and confidence.

I could turn all of this around if I became stronger inside, better at communicating, and more secure with who I am. Perhaps people are asking the wrong questions about us, and that’s why the answers seem so wrong to them. Perhaps these gaps in culture and communication will be bridged as time goes on and Autism awareness spreads.

 

Settling In

Hello from Holland!!! We have been here for 12 days. The apartment is spacious and cheap with new fixtures, thanks to our good landlords next door.

I spent time on my first week here (Tulip Time week) walking around downtown. It was so refreshing to be in a summery atmosphere and it made me intensely nostalgic for my childhood to see kids eating elephant ears. I imagine this nostalgia is intense because I’ve finished school, will hopefully be working full-time, and have a permanent residence. I’m a grown-up.

Gray takes a lot of walks and goes to the library to see his friends often. He also goes to see his parents and sister and brother often. I go with him sometimes, and sometimes I stay home alone. Alone time is something new to me. In Ann Arbor, Gray was home most of the time, especially when his temp job ended. Here, he has a lot of places to go and people to see. It’s weird how being with someone all the time can make you more lonely than having some alone time. I still feel lonely, but the recent and coming family gatherings have helped. It’s nice to be able to go to those things again.

The last time Gray was on medication for ADHD was early 2008. After he stopped taking the medication, his personality transformed into a happier, less-anxious version of himself. Well, he started the medication again just before we moved to Holland. His brain is more developed now, and we wanted to see if it’d help him be more productive in getting his ideas for writing made into projects. The first big change we noticed from the meds was his appetite – he had none for about ten days. When Mr. Blizzards didn’t even want ice cream, I knew it was some other force: it had to be the meds. Making dinner has been nearly impossible, and we’ve visited Burger King a lot in the past week.  It doesn’t help that our oven is broken, though we get a new one tomorrow!

He has also remained or become even more anxious.  I imagine it is from partly the medicine, but mostly the lingering uncertainties of where both of us will work. Apparently, a lot of people asked Gray where I was working, assuming I had a job lined up before we moved here. That would’ve been nice, but we didn’t move here for a job, we moved here for the people (and the amazing accessibility to EVERYTHING, unlike Ann Arbor!).  Both Gray and I have habits of misinterpreting questions like “Oh, she didn’t have a job lined up already?” into criticism. I am really trying to break that thinking habit. I could have taken the approach of moving where a good job would be, but honestly, as an urban planner, it made sense that location meant more to me than a guaranteed job. Small towns are unbeatable in my view. Why move to a new place when so many people we like and love are here?

Anyway, so it was somewhat surprising that Gray had to re-adjust so much to the place where he grew up. But it’s necessary, I guess. He’s not here as a kid anymore: he’s not living at his parents’ house, or on Hope’s campus. He’s a grown-up now.

That said, an hour ago we were both shrieking at the movie Arachnophobia. SHRIEKING.