Aspergers in Love: Couple Relationships and Family Affairs by Maxine Aston

To make a really ridiculously obvious correction to the TITLE of the freakin’ book before I even begin, the syndrome is correctly spelled Asperger’s Syndrome, with an apostrophe. Not ‘Aspergers’. It just goes downhill from there. I would link to the book but really - don’t buy it. Borrow it and then don’t even ‘forget’ to give it back. No really… return it to the owner when you’re done.

I am an adult female with Asperger’s Syndrome. When my relationship started demonstrating obvious issues with communication, I wanted to get a good idea of how the Asperger’s Syndrome might be affecting it. This book was recommended, so I picked it up. On the positive, the book is packed with information and ideas on where a relationship might break down. As other reviews have said, it IS thought provoking and insightful.

However, that said, I was actually quite disappointed with the book. The book is not critical of the AS individual but the tone of the writing stops just shy of that and most of all, this book doesn’t seem applicable at all to a relationship between an AS female and anyone NT or otherwise.

There is a tone that NT people sometimes take when referring to the behavior of a person with AS. It’s a mixture of the condescending ‘poor AS person, they don’t know how to feel properly’ and a bit of clinical detachment. I was dismayed to find the author writing with that tone. So while the NT reading it might feel like they’ve found a source that gives voice to what they are experiencing, it (ironically) does little to foster actual empathy with the AS person and their actions. As a woman with AS, who was looking for valuable input, I was really put off by it.

I made it through most of the book with a really puzzled look on my face looking for that one paragraph that would make me able to relate - REALLY relate to the AS traits she describes. And then I got to the ONE chapter about AS Women in the back of the book - and EUREKA! I was able to relate to this chapter! At the beginning of this chapter about AS Women, there is a tiny explanation about how writing the book using the words ‘AS Male’ simply made the book more comprehensible. But really? Because I could relate to so much of that one chapter and so little of the rest of the book, I wonder, truly, how much of the rest of the book even applies to a majority of women with AS. And while, perhaps AS women just wasn’t the focus of the book, it’s billed as a book about being in a relationship with AS individuals in general - and it’s not. It’s actually a book about relationships between an AS Male and an NT Female with a footnote about AS Women.

…hurts. I think I cut it accidentally while I was doing a crafty thing. But for some reason, I keep forgetting to put a band aid on it.

I asked myself why I beat myself up. Don’t I get enough of that from other people?

When I rock or flap or get stuck like a broken record when I can’t think myself out of a groove, I still feel like a retard. I don’t like that word. It’s so mean. But I feel that low thing that the word means.

I watched Juno and it made me cry. I think sometimes that I watch movies that give me an excuse to cry and then I bawl. But not really because of the movie.

I feel like I mutter under my breath with my actions sometimes. Like I’m extroverted and then oops.. didn’t mean that. I don’t know what I was thinking… just a thing, I think. A mistake. Yeah.. a mistake. I didn’t mean to do that.. nope. Didn’t mean to do that.

A student told me today that I had seemed out of it last night. And I immediately straightened up and put a big smile on and laughed along. Yeah.. must have just been under the weather… ha ha. I took a gulp of green tea.

None of this has anything to do with my finger really. I think my finger was just an excuse to say that I feel very strange in my skin right now. I read a book on Asperger’s Syndrome in relationships written by a woman who thinks we are alien and weird. And now I feel alien and weird and I didn’t mean to feel that way. I intend to write a scathing review.

Lately, Ethan has been socializing more with other kids his age. That’s great on one hand… but it comes with a ton of struggles that non-spectrum kids (and moms) wouldn’t have.

• In school, when he has meltdowns during unsupervised time, they turn violent. Although he has meltdowns at home, he doesn’t get violent. But then, there aren’t other kids around really and I know how to head him off. What happens if he goes up the street to some kids house, gets into an argument, has a meltdown and chokes the kid like he did at recess yesterday? What if there is no parent there to supervise and he ACTUALLY chokes the kid to death? What if he REALLY wounded another child? What if he found access to a weapon at someone else’s house, which has been one of his perseverations since he was 2?
• He picks his friends poorly. This one I can relate to. When I was young, I’d always pick the meanest, rudest, most ill behaved kids to be friends with. Then, of course, I’d get hurt or wrapped up in something that got me in trouble. Ethan does the same thing. Just a couple weeks ago, he came bounding home to tell me about a new friend he’d made while he was walking the dog. The next day, he saw the same ‘friend’, who bullied him. He has NO sense of people or who to trust and it’s the anti-social kids with issues that are most comfortable to forge friendships with because their mannerisms most match his. And maybe they have issues of their on.. and maybe their parents would write the same post… or maybe not.
• Other parents don’t know how to deal with him. Even when they KNOW he has special supervision needs, they still tend to see him as a bad kid.. or me as a bad mom. I’ve even had friends criticize my approach to things, using an episode of his behavior as the reason. They see a meltdown and they assume spoiled child tantrum. They see behavior without consideration of another’s feelings and they assume stuck up and inconsiderate. He doesnt make eye contact and they assume rebellious or anti social. He’s 8… and so if he is those things, it must be because his home or his parents are bad. Or so they think. And so they don’t want him over or they tell me things ‘for his good’ or gently as if I won’t handle it well because I’m obviously ignoring it.
• When unsupervised, he wanders. At school, he will wander away from lunch, sneak out of line and go wandering or wander away from the classroom even, if no one is watching. At home, when unsupervised outside, he will wander down sidewalks into other neighborhoods. Not so safe for him.

And so.. when he asks to go out and ride his bike by himself, and especially if I know there are other kids around, I have to really consider it and consider safety precautions. Most of the time, the answer is no. Lately, I’ve been letting him go once around the grassy area and come right back to check in. But even getting him to do that without wandering has been a struggle. He only really goes to friend’s houses where I am friends with the parents. The one time I wasn’t, he was very quickly not invited back because he stole from the kid.

And I’ve thought about telling the parent… but that’s a whole lot to pile onto the parent - especially if they don’t know him or me. And I don’t know how to explain that he can be violent and that he needs to be supervised or that he has been known to wander off, lie or steal and that his sense of other people’s rights and space is way off without him sounding like a holy terror… but those are the things they need to know to supervise him properly. And I thought about going with him… but that would be mortifying for him and doesnt seem constructive.

I WANT to give him freedom. I WANT for him to be able to be more independent. I WANT for him to be able to go to a friend’s house or to ride his bike. He’s getting to the age where other kids his age are able to do those things and HE wants to do them too. And he’s so smart and so charming and so cute and by all appearances, he SHOULD be able to do those things. But he can’t. Not without risking his safety or the safety of other kids. I struggle with that. A lot.

Ethan had some real difficulty in his first few years of school. His behavior was wacky, he wasn’t listening to anyone, wasn’t doing his homework, wasn’t working in class and was falling behind. There were lots of reasons.

He moved here to live with me and we got him on a 504 plan last year. With the combined effect of living here, the 504 plan, cracking down on him and now this new school, this year he’s just done so well. I’m really glad for the changes. School has become much less painful for him.

This morning, we had a meeting between his two teachers, the special ed director, me - and him. We figured he’s old enough now and he needs to see that everyone is on the same page and that he’s not getting anything by us when he plays one against the other.

So we went through this meeting and came up with a few new plans. He’s going to start turning in his homework every morning instead of at the end of the week and we’re going to put a tag on his backpack to remind him. Visual prompts work well for him. He’s going to do his class work or spend his recess doing it. What? No tether ball?!?!? Like magic, his class work will be done. He was so engaged through the whole thing. He listened and had ideas and was honest about what he’s doing and not doing.

At the end, I was going to take one of the teachers aside to ask a question so I gave him a kiss and sent him on his way to do what he’s supposed to do in the mornings and he grabbed me and said softly “no, mom… I need to talk to you.” This is the tone of voice he uses when he’s being as discrete as possible for an 8 year old. He definitely must have something very sensitive to talk about. So I followed him away from the hustle and bustle a little bit and leaned down. I prepared my sensitive mom face and tried to focus. This was probably going to be a tough one.

Me: “What’s up?”
Him : “Well… while we were in there… my butt was itching.” *giggle*

I am autistic. I fit the DSM-IV criteria for Asperger’s Syndrome and was diagnosed several years ago.

I have trouble holding a ‘normal’ social life. Being social in the way that other people are social is taxing and draining for me. Being in a ‘typical’ relationship doesnt work for me. I need lots of down time and alone time. I can manage to be entirely alone in a crowd.

My sensory needs are different. I like clean and simple. I need to stretch regularly and sit on the floor and be barefoot to be happy. I need weight on me and I get my best sleep under another body and/or heavy blankets. I don’t like to be touched by strange people. I am NOT a huggy Pagan. But I still need touch so I enjoy being touched by someone who I trust so I love REAL hugs from REAL friends.

I’m emotionally intense. Sometimes it doesn’t look like I’m scared or angry or happy or sad on the outside because I don’t always show it the way other people show it and sometimes I’d rather just retreat and feel it alone - but every emotion I feel is very deep and very strong. Sometimes joy bubbles up so much that I giggle and jitter and dance all over the place. Sometimes I flap my hands when I’m nervous. Sometimes I cry when I’m angry.

I have trouble being in a ‘typical’ corporate environment because I just can’t make myself think or act the way ‘normal’ or neurotypical (NT) people think and act. We might all speak English but I speak an entirely different social language and they don’t understand me and I don’t understand them.

But ‘autistic’ is only one way to look at it. It’s a clinical way of looking at something that doesnt feel clinical from the inside. I see a world of color and variation and depth that the world around me is blind to. ‘Autistic’ is a label for abnormality. It’s often understood that abnormal is less than. I don’t feel less than.

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I’m making a jewelry box for Emma for xmas. I’ll glue the gemstones onto the knobs, add another coat of pearl rose to the inside of the drawers and very carefully glue the fragile wings onto the fairy on the top and then I’ll carefully lay it into a box with tissue paper to keep it from getting jarred. And maybe, if we actually put up a tree, this will go under it. But trees, they are so tedious… what with the needles and the cats with the hangy swingy stuff and the needing to be taken back down sometime this year. I digress.

That whole relationship is so freakin’ complex. I get so goddamned frustrated at the whole thing sometimes. There is this ideal that gods, if things were easy and perfect we would have - but they aren’t and we don’t. So she’ll open it on Christmas and maybe she’ll throw it away and say she’s had it too long like she did with the Hello Kitty MP3 player that she REALLY wanted in that odd disconnected way that only an aspie kid can. And maybe I’ll even tell her I made it just for her. Just like I very carefully painted the blocks and the teddy bear for Ethan before he was born. But nothing in that box will convey any of…. THIS. This… stuff. And even if it did, she might never understand.

So, as it turns out, the Man Child’s school overestimated how many 3rd graders they would have this year and Ethan only wound up with 12 kids in his class. Sounds great to me! The school didn’t share my opinion though. So they re-shuffled all of the 3rd grade classes to get 20 kids in a class and moved Ethan’s teacher to 1st grade.

Now, that kind of unsettling is bad enough… but they literally did it without nary a word home to the parents. Really. Ethan came home on Friday half crazed with the news. First, I had no idea if what he was telling me was true or how much of it was skewed. Surely, you understand if you’ve ever gotten a story third hand from a 7 year old. Secondly, I was really unsettled myself… how the hell do I prepare him for this without knowing what the hell is going on? Third, I was kinda excited because I thought this would be a great chance to get him a teacher who felt more ‘up to the task’.

I was all prepared to call his school bright and early Monday morning when I got this email :

“Hi Carrie.

I hope you dont mind my jumping right in here between you and Mrs. WonderfulSpecialEdCoordinator. I am Ethans new teacher, Mrs. Teacher Lady, or to you Nice. I have read his 504, and he isnt new to me, I have had him during the day already. I really look forward to being his home room teacher, as he and I get along quite well. Tell him please that I am very excited he will be mine. I am at your daily disposal my dear via E mail, and please keep close to me. I will be sending some items home with him about me and my program. Feel free to come by any time.

Sincerely,
Nice Teacher Lady”

OMG. Wow. Like, Hello.

And today? At the gas station? The psychology intern from his school came up and said hi and bantered back and forth with Ethan for a few minutes. He really DUG spending that time with him! Like… these people… they love my kid! They dont mind at all doing the things they do for him!

And you know what? When the school is THIS wonderful about everything and this supportive, it makes ME feel better. Suddenly, I dont feel like I’m constantly under fire anymore and it makes ME more supportive of Ethan and in turn, Ethan has an even better time of it. Funny, that. Go you, Wonderful School.

Person on the other end of the phone : “Hi, Mrs. Carrie?”
(oh fuck… it’s like the SECOND DAY OF SCHOOL! What has he done THIS TIME? No speak-e engles!)
Me : “Yeeeeeeeees… ”
Her: “Yes, this is Mrs. WonderfulSpecialEdCoordinator. I got the copy of the 504 plan that you dropped off and I’m looking over it now. I don’t really see any behavior related stuff here though. What would you say that we need to watch out for while we get things settled?”
Me : “Wow… um… well, his last school was really resistant to giving him any behavior accommodations so they got left out. I would say that the number one important thing would be that his teacher really needs to get on top of getting his respect quickly and then she just has to know to stay on top of him and ahead of him so that he doesnt get any wise ideas. I call these first two weeks the honeymoon period. They are usually pretty good weeks while Ethan gets all of his ammo lined up.”
*laughter*
Her: “Well, I tell you what… I’d like to get on top of it before the honeymoon period is over. How about we have a meeting. I could get his teacher, myself and the school psychologist together. Tomorrow doesnt work for us but Thursday does. ”
(wow.. next DAY 504 meeting?! What planet have I awoken on?)
Me : “Sure… that sounds great!”
Her : “And… we have a psychologist intern who is putting together a socialization skills group. Would you like Ethan to take part in that?”
(*ding dong*… Hi god? I’m here. Sorry it took so long.. gee heaven sure is nice.)
Me : “Well.. I mean.. sure.. that was one of the primary things I wanted for him that they wouldnt give him…. ”
Her : “Oh, and we’re starting a recess play group to help with play activity.. is recess usually a bad time for him?”
(Why do I feel like a doe walking unknowingly and peacefully into MY DOOM?)
Me : “Uh.. yeah.. that would be the other thing I wanted and didnt get for him. Recess is the worst for him.”
Her : “Ok.. we’ll get him into that too. By the way, thanks so much for this profile you sent me about him.. it’s really helpful. I’m going to forward that over to his teacher now.”
(Oh.. you mean that old thing? The last school found it very useful too. It held up the wobbly corner of their lunch lady’s desk.)

I must have died and woken up in a school where people give a damn about my kid.

I took Ethan to school today for his first day at the new school. We arrived early so that we could scope out where everything was and meet his teacher. A teacher we encountered encouraged us to simply congregate on the black top with the other students… “oh, you don’t know my child”, I wanted to say. I didn’t. But I wanted to. We went to his classroom anyways. His teacher was studiously working on the computer. I introduced myself and Ethan. She asked him if he was excited and he said no. At least he’s honest.

“He has a 504 plan.”, I say. “Oh? Ok… they will probably give it to me today. For ADD or something?” She asks. “No.. for Asperger’s Syndrome.”, I tell her. “I’m not sure what that is. How do you spell it?” And she pulls out a sticky pad. “You will need MUCH more than a sticky pad for him, this year.” I wanted to say. “Just go ahead and pull out the 5 subject spiral notebook”. I didn’t. But I wanted to. I dutifully spelled our Asperger’s Syndrome and impressed upon her that I would be available all day every day for anything if she needed to call. I’m not sure that was the warning signal it should have been for her. I gave her my phone number anyways. What I would have liked to have done was apologized right then before hand for every ounce of frustration he and I will put her through this year. I didn’t. But I wanted to.

We went to the lunchroom and went through the obligatory “He’s allergic to milk. He’s both casien and lactose intolerant and will have stomache aches and meltdowns if he drinks milk. Yes, I got a doctor’s note and gave it to the office already. Yes, he can have a muffin.”

Then it was out to the blacktop where he lined up with the rest of the class. He stood there, suddenly not so sure that he dodn’t want me to hold his hand anymore… but it was too late. Parents were encouraged to back away and trust that the teachers would take good care of their kids. And the kids started off to their classrooms. I wanted to hug him because he wanted me to. He forgot his snacks today. Everything will be new. What if he can’t find the bathroom? His teachers is SO not prepared for him. What will happen when he doesnt know what he’s supposed to be accomplishing? How will he make friends at all? OMG.. breathe, breathe, breathe.

And we’re off.

I haven’t updated very much lately on my depression. I think I’ve been so neck deep in other stuff that it’s escaped my mind. That could be taken as a good sign.

When I quit the petri dish, I halved my anti-depressant dose successfully. I went from 20mg to 10mg a day with no issues. I’m back up by a few mg as of two days ago because there was too much ‘crash’ if I forgot my meds for over 10 hours, which, because of the whole absent-minded-professor part of me, I do fairly frequently.

For a while, I was considering the possibility of being off meds completely. It’s been a year since I’ve been on them. I was kinda excited about the possibility, but scared too. I don’t like where I was when I had to start taking them. And that ’self’ comes raging out when I ‘crash’ after I miss a dose… so I know it’s still there.

I went to the doctor to evaluate my dosage and she made a good point. I was depressed for years before I ever started taking meds. I can’t expect to be ‘fixed’ in a year. I need to chill out on myself. My realistic side tells myself that I’ve battled depression my entire life. People with Asperger’s Syndrome are prone to depression, I have a family history of depression - it might just be that my brain will not ever be able to function in non-depression space without chemical help. I’m coming to terms with that.

When I crashed the other day, I had really self destructive feelings. I used to have them all the time, before meds. They were just a common thing, all my life. But I haven’t had them since meds. To have them creep up on me like that and just rage through me really put me off guard. It was a struggle to go back to that place that was accustomed to controlling those feelings until my meds kicked in. It scared me.

Sitting in the doctor’s office though, I was able to express how very strange it is to be on a really even keel for a year and then to have my brain just FLIP OUT on me when the chemical balance gets whacked. Seeing that helped make me realize just how much help my brain needs on a chemical level.

On the other side of that realization though, there is still the side of me that knows that depression is a chemical reaction that is started by a thought process. If it was started by a thought process, it stands to reason that it can be healed with a thought process. I believe that very strongly, even being in a place where my brain, for the time being, requires chemical help. I still know, very much, that one day, I’ll be off of the meds and I’ll be able to weed out whatever that thought process is that causes me to need them. One day.