Journeys with Autism

I’m in the midst of blowing another emotional gasket over the way that my stepdaughter treats Bob and me. The pressure has been building in me for a while. I’ve been noticing that I simply don’t want to hear Bob talk about his daughter at all. I’m too angry at her. He wrote her a letter last summer, telling her that she needs to do some work, show us some respect, and deal with her issues, but nothing has changed. She has not even begun the process.

Now, it’s nine months later, and it’s Passover, and Bob’s daughter wasn’t at the table with her brother and stepsister. While Bob has been bemoaning her absence, I’ve found myself digging in my heels deeper and deeper over something she has repeatedly said to Bob. And I quote:

“Rachel has taken away everything in your life that was important to you.”

Yes, she has really said that. More than once. How do I even begin to resolve my feelings about anyone who would say something like that?

The most difficult part is that Bob keeps asking me, “What would it take for my daughter to be welcome in our home again?” I’ve finally realized that it’s an unfair question. I have no idea what it would take. I have given my stepdaughter more love, more trust, and more second chances than I ever should have, and at this point, I don’t know whether I can ever trust her again. Over the course of the past eight years, we have had some good periods, but after every good period comes a backlash that’s worse than the one before.

Her alternately minimizing and denying my autism is bad enough. That’s just plain mind-bending ignorance. But repeatedly telling her father that I’ve ruined his life? That’s malicious. I can’t think of any other word for it. Every time she says it, Bob says, “No, that’s not true. Rachel has given me back my life.”

Does it make a dent? No.

Now, I know that I did not cause this problem, and that I cannot solve it. I know that Bob’s daughter feels guilty over how she devalued her mother when she was alive, and that she wasn’t there to help care for her when she was dying, so how can she show me respect or accept my disability? It brings up too much guilt and pain. So, instead of dealing with her guilt and pain, she flings it all at me, and in the process, she’s built an impenetrable wall between us. It’s intensely painful to Bob that she’s doing this, because when it comes down to it, she’s building pretty decent walls between the two of them as well.

Of course, when she needs something, she feels free to call. In fact, she won’t make any major decision without consulting her father. And yet, oddly enough, she shows no respect for the major decisions he’s made for his life.

It’s mind-boggling. I could almost deal with this from a 20 year old. But she’s nearly 29, and it’s all getting very old. Her mother will be gone nine years next month. I respect my stepdaughter’s grief, but life moves on, and that ain’t my fault.

I don’t know what to do anymore. I have difficulties with trust in the best of times. I tend to trust people too much, and I tend to take them at their word too much, and then I get hurt. It’s happened so much with my stepdaughter that I don’t know that I’ve got another round left in me. For Bob’s sake, I feel like I should have another round left in me, but I’m exhausted.

Life is feeling so very brief these days. The older I get, the more keenly I feel my own mortality. I don’t know how much more life I’ll get to have. Maybe it will be a long life, but I don’t take that for granted. Will my stepdaughter ever come around while her father and I are still here? Doesn’t she realize how much time is passing? Doesn’t she realize how painful this is to her father, who has been there for her at every stage of her life, supporting her, cheering her on, making sure she feels loved? Doesn’t she realize that he won’t be around forever, and that she’s only creating more guilt and regret for herself in the days ahead?

I just don’t get it. I don’t think I ever really will.

© 2010 by Rachel Cohen-Rottenberg

My daughter Ashlynne is a junior in high school. For her journalism class, she keeps a blog about events and issues of interest to her. After seeing autism in the news recently, she decided to write about the most recent and infamous Autism Speaks video. She sent me the link to her post and gave me permission to mention it on my blog. If you’d like to read her piece, you can find it here.

It’s very heartening to know that my daughter sees the issues so clearly and that she is sharing her knowledge with her peers. Way to go, Ashlynne!

© 2010 by Rachel Cohen-Rottenberg

Last night, I reached a milestone in my life. And today, I am so relieved. Tired, but unbelievably relieved.

The backstory: We’re having a new ceiling put into our living room because the old plaster was flaking off. The process entails moving everything out of the living room into the dining room so that the contractors can work. The whole job will probably take another three days. So everything is piled up in the dining room, and I have to walk through the mess if I want to use the bedroom, the kitchen, or the bathroom. Did I mention that I hate clutter?

Yesterday, the contractors were supposed to be here at 9 am. I had planned to do some writing in my loft in the morning, while they were here, and then hang out in the rest of the house after they’d left. It’s always difficult for me to have people in the house, especially ones making lots of noise, so I figured I’d burrow into my loft for a few hours, and by the time I came out, they’d be gone.

Nice plan, huh? Unfortunately, the guys didn’t get here until 11 am or so. Isn’t it fun when people are late and blow your plans right out the window? I got very agitated. I could feel my nervous system panicking. They had good reasons for being late, but I felt like my day was getting totally disrupted. 

In addition to getting here late, the guys were here a lot longer than I’d thought they’d be, and the whole thing became very overwhelming and disorienting. There is only so long that I can hide upstairs before I need to go to the kitchen and get something to eat. And, of course, the irony of the whole situation is that the guys doing the work are wonderful people—friendly, conscientious, and good at what they do. In other words, they’re the kind of people that anyone without a jangly nervous system would love to have around.

But I’ve got a very jangly nervous system, and by the evening, it felt like my day had been turned upside down and shaken a few times. Needless to say, I started to get upset. The disorder in the dining room was driving me nuts. My nervous system was so keyed up that I was shaking. I was feeling angry, and I said so, but the anger very quickly turned to tears. My meltdowns seem to follow this pattern these days. I go through the anger part really quickly and then go straight for the sadness.

I felt really exhausted, but it wasn’t just because of the work on the house. What happened yesterday was just the proverbial straw that broke the camel’s back. What I’m really exhausted by is all the energy I’ve expended since forever in my ongoing quest to become neuro-typical. Now that I’ve realized that I don’t have to pretend anymore, everything I do out in the world feels impossible. Working at the store feels exhausting, because every single time I have a conversation with anyone, I have the following script running in my head:

“Okay, smile……Make eye contact. No! Not that much……Pause. Say something helpful, but don’t jump in too fast……Wait……Wait……Now! Say something clever……Very good……People laughed……Now, make more eye contact……Okay, the conversation is winding down……Okay……Oh, shit, how do I exit gracefully from this interaction? I have no idea……Help……Okay, okay, I’ll just use my strong voice and act confident……There……I’m walking away now……G-d, I feel like such an idiot….”

For some strange reason, running this script just isn’t fun for me anymore.

My husband and I talked for a long time last night, and he helped me to see that almost all of the commitments I’ve made in the outside world are optional. I don’t have to do them. I made most of these commitments when I was still thinking that I just had to work really hard at the store, or on my OT work, or whatever, and things would get better. Even though I knew that I couldn’t change my neurology, even though I had accepted that I wouldn’t make friends at the store, even though I knew that the OT work might not have any effect at all, I still went into everything with the old idea of progress. It’s hard to shake. In large part, it consists of trying to be the NT that I think the world expects me to be. I know I’ll never get there, but over the course of my life, I’ve tried getting as close to it as inhumanly possible.

At some point in the past six months, it did dawn on me that I might not be the quite the actor I thought I was. But this realization didn’t stop me from trying. I still catch myself working on my big, ongoing, lifetime challenge to see how close I can get to “normal.” I used to wonder whether I’d actually fooled anybody, but you know what? I don’t care anymore. The only way for things to get better is for me to start untangling my true Aspie self from all my ridiculous mega-efforts to be someone I’m not. 

I’ve had an NT impersonator job all my life, and it’s time for me to retire. Fifty years is enough. It really is. I don’t need a pension, and I’m not going on the public dole. I’ve got all kinds of great things I love doing, and the old job is getting in the way.

So, although I love my OT, driving an hour to see her is really out of the question. I’m so exhausted by the intensity of all the sights, sounds, movement, and emotional energy out there in the world that I need to pull back in a major way and have some respect for myself. And I don’t want to work at the store again until I find some way to be there without constantly running my script. Having come to these realizations, I emailed my OT and the people in charge at the store. My OT wrote me back a really lovely, supportive email. I’m pretty sure I’ll get a similar response from the people at work. After all, I have taken care to surround myself with very nice people.

Meanwhile, here I am, living in this strange transitional state of knowing that the old ways won’t work, and wondering what the new ways will look like. I hate transitions, but there you are. I don’t know what the future has in store, but I do know that my marriage, my mothering abilities, and my capacity to be a friend all depend upon being in some kind of harmonious relationship with who I really am.

I’m only beginning to understand how different I am from most people. I’m only beginning to understand that most people do not experience the world with anything remotely approaching the intensity that I do. And I have to respect that. I have to respect the fact that just going outside and seeing all the green leaves on the trees can be a beautiful and overwhelming experience. It’s overwhelming because it’s so damned beautiful.

Perhaps I need to experience the world in small portions. Something like that.

It  feels so good to start over—to get up in the morning and tune into my hyper-aware, hyper-sensitive Aspie nervous system and see what we can do together. Last night, I didn’t sleep well, and when I have things to do in the outside world, I always feel very anxious trying to do them without enough sleep. But this morning, I realized that I didn’t have to go out there. I could be tired, and it would be all right.

The one outside commitment I’m keeping is to my new therapist. First things first. I want to work on accepting who I am, and she seems quite willing to help me. So that’s where I’ll begin. Again.

© 2009 by Rachel Cohen-Rottenberg

Some momentous personal things have occurred since last Friday. It’s taken me awhile to know how to express what I feel about them. Although I woke up with a bad cold today, I’m feeling fairly lucid at the moment, so I thought I’d start describing the happenings.

Last Thursday, I made a big mistake that only I could see: I tried to do two things in the outside world in a single day. And worse than that, I tried to do them consecutively.

Before I left for my volunteer job last Thursday, my husband asked whether I could stop at the co-op after work to get him some more homeopathic medicine for his cold. I told him I’d try, and I felt the way I always feel about these requests: Totally Lousy. Lousy because it’s so hard for me to go to two different places in the same day, and lousy because I wish I could just say, “Sure, honey, no problem.”

In any case, I went to work, and then I went to the co-op. Outside, there were some really nice plants, so I bought a bunch, and then I went into the store and bought some medicine for my husband. Luckily, the store was quiet, so I didn’t feel completely overwhelmed. When I came home, I was tired, but that’s pretty normal after work, so I rested. The remainder of the day went along fine, and I felt great. 

Then, Friday came, and I had my first meltdown since my diagnosis in November. To understand why, you’ll need to understand that every Friday, we get ready for Shabbos (our Sabbath), which includes the following tasks:

1. Sweeping up the house (me)
2. De-cluttering the house (me)
3. Emptying the wastebaskets and recycling (me)
4. Buying the food for dinner (my husband)
5. Cleaning the bathroom (my husband)
6. Setting the table (my husband)
7. Cooking the food (my husband)

This past Friday, though, my husband was sick, and I started worrying about having to take on some of his tasks. That was the beginning of the meltdown: the worry. I knew I couldn’t do the food shopping myself and get the house cleaned up, so I offered to go food shopping with him. I figured that it would help us both. So that was the plan.

Nice plan. Except that then I had to figure out in what order to a) clean the house, b) get a shopping list together, and c) go to the co-op. But I couldn’t even get to the point of sequencing. Each task felt absolutely monumental. Like. Turning. A. Barge.

So, I started with what was familiar. I started sweeping. And as I started sweeping, I noticed that I was becoming more and more sensitized about how hard it is. I’m fine with taking the broom and moving it back and forth on the floor. But then, there’s having to pick it up and pull the dust bunnies out of it; somehow, having the broom upside down makes me dizzy. And then, of course, there’s having to bend down with the dustpan and sweep the dust bunnies into it. Serious gravitational insecurity moment. Just thinking about it makes me anxious. And then, the worst part is sweeping under the bed. Arghh. I have to get down on the floor on my stomach and kind of shove the broom here and there till I get all the dust balls. When I’m all done, I am one dizzy, disoriented human being.

When I realized how hard all this was going to be, I started to get really agitated. And when I get agitated, I start thinking really helpful thoughts, like, “Hey, Rachel, if you’re so smart, how come sweeping the floors is so hard, huh? Huh? HUH?” As my self-esteem started going down, my irritability started going up, until I was stomping around and angry at everything. When my husband committed the unforgiveable sin of moving the recyclables to the garage, the recyclables that I had planned to move myself, thank you very much, I just about had a cow. Fortunately, I was able to recover some sense of time and space, and say, “It’s not you I’m angry at. It’s me. It’s me. It’s me.”

Ultimately, I just broke down into inconsolable sobbing. The more I thought about how hard it was to sweep the floor, the more I thought that writing up a shopping list was beyond my skills as a human being. How could I possibly transition from one task to another in the state I was in? Especially when writing a shopping list required time and concentration that seemed impossible to locate at that moment. On a good day, each task feels like a big challenge. On the day following one in which I had pushed my limits, each task seemed beyond my reach.

Hubby tried to give me some comfort, but I just kept saying, “Everything feels so incredibly hard. Why does it feel that way? Why can’t I just sweep the room without getting dizzy? Why can’t I just make a food list and be done with it? I can’t stand it.”

And then he said the words that I’ve been waiting to hear all my life:

“It’s not your fault.”

I melted. What an incredible relief. It’s not my fault. I’m doing the best I can, and then some. I have to accept myself as I am. I need to stop apologizing for what I can’t do. It’s not my fault.

Wow.

Okay, hubby loves me as I am. He sees me clearly, and he loves me as I am. That’s very good. Cross that worry off my list. Done. I got it together to make the food list and go shopping. My husband even swept under the bed and swept up everything into the dustpan. We were both tired out, but we were in it together, and that put me in a much better frame of mind.

But then, on the heels of this major piece of wonderfulness, came the second worry: I don’t do enough for my daughter. I can’t cook more than a one-course meal because the sequencing is too hard. I can’t go to her concerts at school because the sensory overload is immediate. I didn’t go to the paintball place for her 8th birthday. And on and on like that.

I was right back in the soup. I felt like writing her a letter, apologizing for all the things I haven’t been able to do over the course of 16 years. I know, it’s a little much, but that’s how I was feeling. I decided that when she came back from her class trip, I’d talk with her about it. I’d try to explain why I am the way I am. She knows about the AS and SPD, but we haven’t talked about its impact a lot lately.

So, I was getting ready for this conversation when Mother’s Day came, and I thought, great, we’ll have our talk today, when everyone is in a good mood. And then, before I got the chance to initiate even the merest hint of a beginning of a conversation, my wonderful, loving, utterly fantastic daughter gave me a Mother’s Day card she had made.

And the card said, “Thank you for being such an awesome mom. Thank you for everything you’ve done for me. I love you so much.”

I couldn’t believe it. It was perfect. I said, “That’s so beautiful, Ash, and so much what I needed to hear.” And then my big strong teenager gave her little Jewish mom a great big hug.

I melted. Again.

So, in the course of 72 hours, I got to hear the words I most needed to hear:

My challenges and disabilities are not my fault.

I am an awesome mom.

It’s no coincidence that today, I’ve finally got this cold that’s been coming on and going away for months now, over and over. Until today, I’d start to feel sick, and then a few days later, it would turn into nothing. This would happen in two-week intervals, over and over and over.

Now that I’ve had these two weighty pieces of worry taken off my body and soul, I can get sick like a regular person, get over it, and go on with my life. That sounds pretty good, don’t you think?

© 2009 by Rachel Cohen-Rottenberg

To all you moms out there: Happy Mother’s Day! I hope you have a fun and wonderful day. 

In honor of Mother’s Day, I’m posting some pictures of the person who made me a mom: my bright and beautiful daughter Ashlynne. All of the photos were taken last week, during a class trip to New York City.

On the train from Springfield:

On the ferry in NY:

At the Museum of Modern Art, looking like part of the artwork:

 

Just being bright and joyful:

Our plan for today is to go to one of my favorite kinds of places in the world: a perennial farm. I’ll get some new flowers, vegetable plants, and herbs. If the weather cooperates, I’ll get to do some planting in the garden, too.

Be well, everybody! 

© 2009 by Rachel Cohen-Rottenberg

Although spring officially started in March, here in Vermont it’s only arrived in the past couple of weeks. It’s been a lot of fun to see what’s appearing in our gardens:

I’ve planted another garden to the left of the one in the picture, but it’s not quite finished yet.

When I’m not digging up our entire lawn and planting things, I sometimes turn my attention to art. Here is a project that I just finished: a shadow box!

 
This project was so much fun. I worked on it when my mind was too full of words and I needed a different kind of concentration.

I bought the shadow box years ago, when my daughter was small, and it had been sitting in the attic unused. So, I decided to create “The House of the Worry Dolls.” The dolls are kind enough to hold many of my worries. At least, that’s what it says on the little piece of paper that came with them. If you look carefully, you can see a doll in each of seven rooms. (One of the dolls is in a tiny coffee mug.)

Each room gets its own hanging mobile or lamp. The origami crane at the top of the house came courtesy of my daughter; years ago, when we were homeschooling in a cafe, she made the crane out of a used teabag packet. The thermostat is from our old heating system, the two cats used to be earrings, and I found the orange Matchbox car out in the garden when I was digging up the grass.

And finally, here are some recent photos of my daughter Ashlynne. As you can see, she jumps for joy at the beginning of spring…

She hasn’t forgotten her powerful karate kicks…

 
And she has a style all her own!

Occasionally, she will even sit on a couch in the middle of the street:

Why? Because she’s resting. She’s been working hard. At what, you ask? At carrying the couch several blocks with her friend, of course! A neighbor had put the couch outside to be taken away for free, and Ash and her friend decided to carry it home. When they showed up with it, I told them to just leave it on the porch, and Bob and I would help them carry it up the stairs to Ash’s room. But they were on a roll. They brought the couch all the way upstairs as well.

Girl power!

© 2009 by Rachel Cohen-Rottenberg

I’ve been doing a lot of grieving lately. I’ve been missing my daughter’s childhood terribly. I’m not sure whether I’m missing the child she once was, or the person I once was, or both. I’m not sure there’s a whole lot of difference. Motherhood changed me from who I was before.

From the time I was in my early 20s, I knew that I wanted to be a mom. I didn’t have Ashlynne until I was 34, and then I fell in love with the whole thing. It wasn’t difficult. She was an amazingly easy baby. She even woke up giggling every morning. I kid you not. Giggling.

When I was on maternity leave, we’d go out to the park whenever the sun was out, and then she’d take a nap. Her dad would call from work to see how things were going. I’d tell him that Ashlynne was napping and that I was really exhausted. He’d ask me why I wasn’t catching up on sleep. I’d say, “I can’t. I’m just sitting here, watching her. She’s so incredibly beautiful that I can’t take my eyes off her.”

It seemed as though it would last forever. Of course, people warned me. “Enjoy it now,” they’d say, “because the time just flies by.” Rest assured that while I politely thanked them for their wisdom, I was smugly thinking, “They’re just regretting the fact that they didn’t pay attention to their children. My daughter’s childhood will not fly by. I will be paying attention.”

And I was paying attention. I was doing crafts and letting her use face paint on her tummy. I was homeschooling her, encouraging her creativity and her independence of mind. I was working at home as a writer so that she could see me whenever she wanted. I took pictures of just about everything she did. I kept journals. I kept every piece of artwork. I was determined to be there for every moment I could. And it just kept going and going and going and going.

But now, suddenly, it’s almost over. She’s driving. My car. On the highway. The fact that she only has her learner’s permit, and that my husband is always in the car when she drives, does not detract from how old that makes me feel. And how strangely unnecessary.

Oh, yes, I know. I’m still necessary. I’m her mom. I help her with her problems (the ones she tells me about). I listen. I empathize. I give good advice. I let her drive my car. (Did I mention that?) I read the awesome creative writing she does, and I look at the amazing photographs she takes. I give her money for the movies. I used to ask her whether she needed help with her homework, but I quit doing that last year. She told me that she was grown-up enough to take care of it herself. And she takes care of it just fine.

When did it all begin to wind down? The first indicator I had was the day last year that she said to me, “Mom, there are things about my life you do not know.” Once I got over the shock, I said, “Yes, you’re a teenager, and you deserve some privacy.” I even believed it.

Does that make me a good mom? Yes, it does. Give me an award and I’ll frame it.

But it won’t stop time.

And now, my daughter has crossed over from childhood to young adulthood. My friend Sue saw her a few weeks ago, and she cried when she saw what a beautiful young woman she’s become. When Sue and I first met, our daughters were 9. Now they’re 16. How is that possible?

I don’t know what to do with myself. I mean, I do lots of things. I blog. I do my community service work. I keep the house together. I knit. I do my art. I’ve relearned Torah cantillation. I see my OT. Now that the spring is here, I’m gardening, which I love. In fact, I spent much of yesterday digging and weeding and transplanting.

But everything is different now. Everything I did before was in the service of being Ashlynne’s mother. It gave me a focus—spiritually, emotionally, physically, and intellectually. When Ashlynne was born, I thought, “When she’s 18, I’ll be 52. That’s a long time away. I’ll be old by then.” Now I’m almost 51. No more babies. No more intensive child-raising. No going back. Only forward. But to where?

I can’t work anymore. There is no new career. For most of my life, I powered through my sensory overload, anxiety, and general Aspie confusion with all the willpower and tenacity at my disposal. I worked full-time, homeschooled, and did enough honest labor for three or four people. My last manager used to joke that when I had the flu, I worked at normal human speed.

I worked from the time I was 17 until I was 47. And now, I can’t work anymore. I lived in defiance of my neurology for 50 years. I can’t do it anymore. My husband says I’m like the Road Runner in the cartoon. Everything was fine, even when he ran himself right off a cliff. Even then, he could still run in mid-air. Until he looked down.

When I discovered my Asperger’s, I looked down. It’s a good thing I did. But now, all of a sudden, I’m an Aspie with a young woman for a daughter. How did that happen?

These days, I seem to vacillate between hope and grief. Yesterday, I was sitting on my front porch, and the little girl who lives across the street came over. Because our family is new to the neighborhood, we’re just getting to know our neighbors. She introduced herself and told me she was eight years old. We talked a little, and then she skipped down the street with her dog. It was a wonderful, reassuring moment. There are still little kids around. They’ll come over and talk a bit. I’m still in the flow of life.

And then I realized that half of Ashlynne’s life ago, she was eight, skipping down the street like that little girl. I got really teary, just as I am right now.

I’m certain this grieving is all very normal. Our kids are only on loan to us, so the grieving is inevitable.

Is it worth it? Yes, even with the grieving, it’s worth it. All of it.

© 2009 by Rachel Cohen-Rottenberg

I sometimes hear my fellow Aspies say that they are afraid to have children. Some fear being cold, remote, and unfeeling parents. Others are comfortable with the idea of raising a child with an ASD, but feel apprehensive about parenting a neuro-typical child.

Certainly, there are challenges related to having Asperger’s and raising children. I won’t deny it. But we Aspies bring incredible strengths to the process as well. No Aspie should disqualify himself or herself from parenthood simply on the basis of an Asperger’s diagnosis. My daughter Ashlynne is neuro-typical, and I wouldn’t trade being her mom for anything in this world. The past 16 years have been the best years of my life.

Our Aspie Challenges
1. Confronting family history

To me, dealing with one’s childhood issues is a must for any parent. Having a troubled childhood is tough on anyone, and it can have an even greater impact on an Aspie. Having an Aspie parent who is difficult can also put an Aspie child off the idea of parenthood altogether.

My father was an undiagnosed Aspie. He could be very fun or very distant, very supportive or very condeming, very loving or very frightening, depending on the day and time. I identified strongly with my father’s sensory defensiveness and confusion about how to interact with other people, but I swore that I would do everything differently when I became a parent. It was many years before I realized that my father’s Aspieness was separate from the things he had done. We were both Aspies, but we had choices about how we treated our children. He made his choices. I made very different ones.

While no one ever works out every life issue completely, I’m glad that I recognized and began working with mine before becoming a parent.

2. Meltdowns

Most Aspies have them. They’re not fun for anyone. How to handle them when you’re parenting is a big challenge.

I didn’t know I was an Aspie when Ashlynne was small, so I felt very, very guilty about my meltdowns. I thought that they were reflective of some terrible character flaw and that I needed to work harder in therapy. Now that I’m diagnosed, I feel much less likely to have a meltdown. I know what causes one, I can read the warning signs, and I know how to speak my feelings before they consume me.

Looking back, I can see that I mitigated the effects of the meltdowns by a) making sure Ashlynne wasn’t present during them, or b) taking special care to tell her that the meltdown was not her fault.

Has it worked? Certainly. One night, when I was in serious self-abasement mode, my husband said, “Oh, for goodness sake. Look at your child. How is she doing? Good self-esteem? Basically happy? Friends she enjoys? Yes? Can we start dinner?”

Every child has challenges in life, whether that child has an Aspie parent or not. I have watched apparently neuro-typical parents do far, far worse things than have a meltdown. Ask me sometime and I’ll try to describe what they did without resorting to every curse word I know.

3. Inability to do fun kid things in crowds

When Ashlynne was small, I braved the wilds of Chuckee Cheese and insanely chaotic birthday parties. After awhile, though, I realized that I ended up with a migraine or a case of exhaustion. So, we worked it out for her neuro-typical dad and step-dad to do the crowd stuff while I did the more quiet stuff. For a number of years, I have not entered any of the following places: a mall, an ice skating rink, a roller-skating rink, a party, a downtown New Year’s celebration, the 4th of July fireworks, or a first-run movie.

Before I knew about AS, I felt awful about not being able to do activities in crowds. I kicked myself over and over because I was not the fun parent. I thought I was lazy and let my husband do all the work. Now that I’m diagnosed, I have been liberated from these kinds of distortions. These days, I just say to my daughter, “I’m afraid I can’t take you to the mall, honey. You know those places aren’t for me.”

Her response is usually, “Yeah, mom. It’s not like I haven’t noticed.”

If I were married to a crowd-aversive Aspie and had the same neuro-typical daughter, I would enlist the help of other parents. Some parents love driving and being in crowds. Really! It’s amazing. There are other things I can do, and working out an exchange of skills to keep a balance with other parents would not be difficult.

4. Hyperfocus and special interests

Most Aspies are capable of high levels of focus when it comes to our special interests and projects. I am no exception. When Ashlynne was born, I had to make the shift from having lots of time to do whatever I wanted to being on call 24 hours a day. Most parents find this transition a daunting one. I certainly did. I can very clearly remember organizing boxes of memorabilia, and then reorganizing them, and then reorganizing them some more, just to get back a sense of control.

The good news is that once you get into the swing of things, you can start including the child in the things you enjoy. I remember thinking that my life would really take off when I had Ashlynne, because I could include her in my activities. And that’s exactly what I did. I’ve always loved to go for long walks, so I did, with Ashlynne in her stroller. I love picture books, and lo and behold, so did she! As she got older, I could homeschool her and learn new things every day. I could share music and art with her. I could teach her to read and share my joy in it. I could shop with her at thrift stores. I could help her carry the pounds of books she took out of the library each week. There was no end to the interesting things we could do together.

Our Aspie Strengths
1. Ability to verbalize

Over the past 30 years or so, the phrase “use your words” has become a staple of parenting. If your child is screaming, you say, “Use your words and tell me what’s wrong.” If your child is hitting someone, you say, “Don’t hit. Use your words instead.” If your child is pouting, you say, “I’ll be happy to listen to you if you use your words.”

And what do we Aspies use in our interactions with other people? Words! Lots of words! We don’t read nonverbals very well, and we don’t use them to regulate social interactions. Words are our life rafts in a sea of social confusion.

Personally, I consider words holy. So, I have always used them to express what I’m feeling or thinking, and I have always asked Ashlynne to verbalize her emotions and thoughts in return. Her dad and step-dad are also verbal people, so she’s had plenty of good role models. As a result, she has always been able to articulate her thoughts and feelings.

2. Ability to create structure

Not all Aspies are good at structuring things, but those of us who have the structuring gene provide a great service to our children (so long as we don’t overdo it). Kids need structure, and they feel very secure when they have it. Our Aspie need for routine can play a very positive role in the life of a child, so long as we take everyone’s needs and interests into consideration. It’s an opportunity to work creatively with your partner and child so that everyone can get what they need and keep a modicum of sanity. It’s not always easy, but it’s very satisfying when it works.

My ability to create structure allowed me to homeschool for eight years. I loved it. I created a curriculum every year, made lists of books under each subject header, and kept a daily homeschooling journal for the school district. One of the reasons I enjoyed homeschooling so much was that I got to spend time with my daughter in a structured way while being creative with the learning process. 

3. Honesty and directness

Our Aspie capacity for being honest and straightforward can work wonders for a child. I grew up in a family with a mom who was, to put it mildly, a very unreliable narrator. It was intensely confusing for me to try and figure out how things really stood. I still catch myself stating something that my mother said as fact, and then having to remind myself that the story may not be true.

Fortunately, children of Aspie parents do not tend to have this problem. If anything, they may have the opposite problem: thoughts and feelings stated so bluntly as to be hurtful. It is very important to frame honest feelings so that a child can receive them in the most constructive way. I am very conscious about how I say what I need to say to my daughter at any given time. Sometimes, bluntness is the best policy, especially with a teenager. Sometimes, it’s the worst choice. When it’s your child, you know what works and what won’t.

4. A passion for justice

I’ve always had a heart for justice. It’s a wonderful and painful gift. If you insist on fairness, having a child is a crash course in how completely maddening the world is. Kids regularly come up against the insensitivity of adults who think that children accrue human rights over a period of years, rather than having been born with them.

Enter the Aspie parent, who feels compelled to educate such people. Does it work? Usually not. I have written so many eloquent, well-considered, solution-oriented letters to people who weren’t capable of understanding a word I said. I wish I’d saved those letters. I’d compile them into a book called “If I Have to Explain Why, You Wouldn’t Understand” (with a shout-out to Harley-Davidson, who made the T-shirt with that slogan on it).

So, maybe you can’t change other people, but you can give your child a code of ethics that is sorely lacking in many kids. When we were homeschooling, Ashlynne and I would do lots of role playing about making ethical decisions—about not following the crowd to do wrong, about being inclusive, and honest, and keeping your word, and all the things that seem to be going out of style. She loved coming up with different ways to address ethical dilemmas, and the lessons have stayed with her.

5. Acceptance of non-conformity

If you’re an Aspie, you’ve always been in the minority. You’ve had to deal with being different, with being the odd one out, with being out-of-step much of the time. As painful as these experiences are, they’re very valuable for a parent. I entered parenting with an acceptance of a fairly wide range of behavior and outlook. As a result, lots of kids congregated at our house because they felt safe there.

In conclusion
Our children don’t expect us to be perfect. They’re looking for integrity, and they want us to make our best effort on their behalf. They’re nowhere near as hard on us as we are on ourselves.

So if you’re an Aspie, and you’re considering parenthood, don’t count yourself out. It’s a great adventure.

 © 2009 by Rachel Cohen-Rottenberg