Tag Archives: Husband

Autism and Friendship #Write31Days

Welcone to day one of #Write31Days for 2017. This month’s theme on my blog is autism. One of the most characteristic impairments in autism, at least according to diagnostic criteria, is an impairment in social interaction skills. In DSM-IV, the diagnostic manual under which I was originally diagnosed, failure to develop peer relationships appropriate to developmental level was one of the impairmetns under the social interaction deficits criterion. “Peer relatioships” refers mostly to friendships, though I reckon it can refer to romantic relationships in adolescents and adults too. Today, I will discuss how autism impaacts my understanding of friendship.

Many years ago, I read an article by famous autism expert Tony Attwood on the topic of development of friendship skills. A typically developing child starts to develop friendship skills at around age three. They realize that friendship requires some level of turn-taking but their approach to this is egocentric, based on for example sharing of material goods or playing together. When someone asks why a person is the child’s friend, the child at this stage would typically respond: “Because they live next door.”

Children between age three and six are typically at this level. Autistic children (and in a way even adults) typically remain at this level longer. When I was nine, for example, I’d consider someone a friend because they gave me candy. Admittedly, I’m still at this level in a way, though I realize this is inappropriate. For example, when my now husband said that he was in love with me, I wasn’t sure whether to reciprocate it, since I didn’t know whether I liked him just because he was the only one who’d visit me in the psychiatric hospital. Also, I still can’t sem to move away from materialistic aspects of friendship like sharing candy.

At around age six, typically developing children move into the next level of friendship skills, which is based on shared interests and games. When asked why someone is a child’s friend, a child at this stage would say: “Because they let me play the games I want to”, “Because they’re nice to me”, etc. I relate to this level of friendship too.

Another criterion of autism in DSM-IV was lack of social reciprocity. This means that an autistic person doesn’t understand age-appropriate rules of give-and-take. Many autistic people can come across rather self-centered. So do I. For exampel, I rarelys hared candy (here we go again!) in the institution, even thoug I did accept it from others when offered. Give-and-take, however, seems not just based on material things and there aren’t many clear-cut rules for it.

I have a rather literal interpretation of reciprocity: when my husband, for example, gives me something, be it material or immaterial, I have to give him the same back. As such I feel extremely bad about being dependent on my husband for many things, like transportation, food, etc. He says that I give him love in return, but I barely understand the concept of love.

List of Things that Make Me Me

During the past week and a half, a lot has happened, and yet so little has. I spoke to the patient advocate regardng the recent diagnonsense. She recommended a second opinion at another hospital. For various reasons, I decided against this. My psychologist did consult a psychiatrist at the brain injury unit, who told her she was right that brain injury and autism shouldn’t really be diagnosed together, but the same goes for borderline personality disorder and brain injury. Now I’m left with a very confusing diagnosis. I think it’s going to be personality change due to a general medical condition (brain injury), but my psychologist also said something about generalized anxiety disorder and attachment disorder possibly going onto my diagnosis. And I thought I was the one who collected labels.

This is all very confusing, because I rely on concrete labels for defining myself. How coincidental that I just opened a journaling eBook to a random prompt and it told me to make a list of my uniqueness, my marvelousness, my talents. These are not psychiatric labels, because, although some people consider autism a gift, I cannot say that autism itself should be one of my talents. With no further ado, here is my great list of things that make me me.


  • I am intelligent. I have a lot of knowledge and I can articulate it well most of the time. I am good at analyzing stuff.

  • I can persever(at)e if I truly want to achieve something.

  • I am sensitive. Sometimes, this sensitivity causes me to experience overwhelm to the point where I appear uncaring, but I truly care about other people.

  • I am creative. I write, I craft, I make soap.

  • I have a pretty cynical sense of humor. I remember on my first day in the psychiatric hospital, telling jokes about how you could tell the patients and staff apart.

  • I am stubborn and I like it. My husband jokes that my parents haven’t made up their minds about anything since the 1980s. I am thankful not to be that extreme, but I can really want to be right sometimes.

  • I am a semi-successful blogger even though I haven’t been blogging as much over the past few months.

  • I am a good wife.


This list should or could probably be longer. It also didn’t really cheer me up. However, it does help me see that I’m more than my confusing set of diagnosense.

Ten Ways in Which I’m Blessed

This week was a tough one. I have been stressed almost constantly over a lot of things. For this reason, I’m extra happy to find out that Finish the Sentence Friday is about blessings this week. It’s supposed to be a joint linky with Tuesday Ten, but I can’t find the Tuesday Ten post on blessings. Maybe it’ll go live next Tuesday. However, let me write a list of ways in which I’m blessed anyway. I hope it’ll cheer me up. Here goes.


  • I have my husband. I’m so glad I met him nine years ago.

  • I have my home in the tiny village.

  • I have my family. My parents are still in good health and my grandma is still alive and relatively well for a 92-year-old too.

  • I have my cat Barry.

  • I don’t have to worry about money most of the time.

  • I am in okay physical health.

  • I have my computer, with which I can connect to the Internet and interact with mostly supportive people.

  • I can write and express myself creatively.

  • I have my faith. Even if no-one else loved me, God does.

  • I am alive. I am not always happy about this, but right now, I try to see it as a blessing.

It was a bit hard to write this list, but I’m so happy I got to do it. I hope you are blessed in many ways too.

Dear Transition

Like I said a few weeks ago, I bought the 22-day life transitions journaling workbook. I didn’t use it consistently, so I only finished the first day’s exercise and read the one for day two. It sounded particularly hard to me, but today, I’m trying to take up the challenge. The assignment is to write a letter to the transition in your life, in my case, the move out of the institution. You should be as honest as possible and can rant all you want. Then, let the transition respond. Here goes.

Dear transition,

Screw you, why do you have to happen? Why can’t things just stay the same. I know that’s not ideal, but that’s all I’ve known for the past 8 1/2 years. This institution life feels safe. Call me dependent all you want, I don’t care. I don’t know what happens when I leave the institutio. I fear I’ll fall flat on my face and not be able to cope.

Besides, I never planned on living independently again. I never learned to cope in a less restrictive environment, because that wasn’t the goal. Even since it’s been the goal that I live with my husband for the past 1 1/2 years, I still never learned to cope. I tried an afternoon at home here and there, but I still feel utterly overwhelmed when I’m at home for longer than a few days.

I don’t know what you expect of me anyway. My husband wants me to live with him, but I don’t even know wha the expects out of me. He probably expects me to take care of some housekeeping, which I haven’t done i years. Evernything else is uncertain too. I haven’t found day activities, haven’t been accepted by the mental health agency. I know you will happen – I will move in with my husband -, but I don’t even know when. So stop bothering me.

Astrid

Dear Astrid,

You sound angry at me. I’m sorry about that, because I never meant to piss you off. I am uncertain, I know, and I know that scares you. I know your control has been taken away by the psychologist, who decided seemingly arbitrarily that this is the point at which you need to stick to your decision. Then again, she’s right. You can’t waste your life away in the institution, and i know you don’t want to either. It may feel safe now, but safety isn’t all you need. You want to develop yourself, too.

Try to be confident that your treatment team will put a safety net in place should you not be able to cope. Try also to focus on the opportunities I will award you. I know you have so many dreams that you sometimes don’t even want to write about. I know that I won’t guarantee you that you’ll be able to make your dreams come true, but sitting on your butt in the institution certainly won’t make them come true. Try to stop dreaming and fearing and start living. Good luck.

Your transition

In Ten Years’ Time

I had the “kitchen table talk” yesterday. This is the official term for the meeting with your local social consultant to determine your need for services funded through the community support act. The meeting went well, though not much is clear. I’ll be eligible for supports, but I first need to go to the mental health agency near the tiny village to discuss my treatment there. After all, if I go into day treatment or assertive community treatment, part of the services from mental health will overlap with supports I’d be eligible for through the community support act. I’ll push my psychologist to get me an appointment with mental health as soon as possible. The consultant officially has to make a decision on community supports within six to eight weeks.

This has me looking ahead to my life with my husband. I hope to move in with my husband this summer. My mother-in-law had somehow gotten the idea that I’ll be leaving the institution in August, because she asked me how I felt about discharge. I have no clue where she got the idea that I’ll be discharged this August from, but I hope she’s right. After the kitchen table talk, I am somewhat more excited about leaving the institution than I was before. It’s still scary, but it’s a little less scary at least.

I was just looking at the 30-day recovery challenge from BelieveInRecovery.com. ONe of the challenges is to describe where you hope to be in ten years. I already wrote a letter to my future self in 2014. Today, I am going to take it a little easier and just fantasize about my life in ten years’ time.

Ten years ago, I resided in an independent living training home for the disabled. I had made the decision to postpone university till 2007, but had not yet found something to study for 2006. The idea that I am autistic had not been picked up by the staff yet. I was still, in other words, “just blind”. And miserable.

Now, ten years later, I’m not as miserable but still not very happy. I hope that in ten years, I’ll be more comfortable in my own skin than I am now. I obviously hope that I’ll have lost the almost 20kg that I’m overweight.

In the past ten years, if you look at the larger scheme of things, not much has changed. My parents at one point came to talk to my doctor at the locked unit and told him that I’d gone from the rehabilitation center for the blind to the training home and from the training home into a psychiatirc hospital. They overlooked the three months that I’d lived independently, but in the larger scheme of things, how much do these matter?

I hope to change more in the ten years to come than in the past ten years. However, I’m afraid to dream big now. I mean, in an ideal world, I’d go back to school and complete a program in counseling or psychology. Not to be an employed counselor, but just for the knowledge of it. I’d be doing volunteer work helping people navigate the social services field. I’ll have written and published my autobiography. Maybe I’ll do some freelance writing – if I can manage to learn to type properly. I had at least five typeos in that sentence.

One thing that changed within the past ten years and that I hope won’t change within the next ten years, is my relationship status. Ten years ago, I was single and clueless about relationships. Now, I’m still clueless but apparently doing an okay job at loving someone. I hope to still love and be loved by my husband ten years from now.

Transitioning: The End of the Tunnel

On May 1, Mari L. McCarthy started the 22-day life transitions journaling challenge. I didn’t sign up, since I had just failed on committing to the whole health challenge in April. However, today I bought the challenge eBook – from KObo, not Mari’s own site, since it’s much cheaper on Kobo. Since I am about to start in what may be the most important transition of my life, I thought I’d try my hand at the challenge. For day one, we’re supposed to meditate on where we are right now and where we want to be headed.

I visualize the point where I’m now as being at the beginning of a tunnel. It’s not necessarily a dark tunnel, but I can’t see the end of it as I look into it. Nonetheless, i know it will end somewhere in the tiny village, in my husband’s and my home. I can only head this way, but since I can’t see what’s inside the tunnel, I cannot see what’s going to come onto my path as I head into the tunnel. I know where this will end, but I don’t know how or when. After all, no definite date has been set for my discharge from the institution. Though I will have the “kitchen table talk” with the social consultant on Monday, right now I have no idea how I will cross this tunnel and what I’ll find at the end of it.

I can however hear my husban calling me from the other end. I can hear him cheer me up that it’d be so great and utterly exciting to be together at last. I can hear my psychologist and social worker on my current end of the tunnel telling me that I wanted to go into it and come out at home. Even as I sit here, more than a year into the process of arranging for my transition out of the institution, I still am not sure that this is really what I want.

Sometimes, I idealize the end of the tunnel, what it’ll be like to be home. I see my husband lovingly embracing me. As he takes me into his arms, I know that I’m happy being with him and this was the best decision I could’ve made. I go to day activities. My psychologist already shot the snoezelen idea I came up with a few months ago, so I’ll go swimming and doing yoga and going for walks instead. I will meet some nice people at day activities or through the community. I’ll be much more independent than I am now, being able to do some cooking and cleaning on my own. I’ll eventually take up some classes again. My husband loves me when he comes home from work and we’re both happy.

At other times, such as right now, I devalue the end of the tunnel. I look at it as one dark pit in which I’ll fall. My husband and I constantly step on each other’s toes. When he’s home, I’m annoyed by him and he’s annoyed by me. When he’s at work, I’m at home alone sleeping the day away or daydreaming of harming myself. I don’t even have my blog anymore, since my husband doesn’t want me to write about my life at home and I can’t think of anything else to write about. I have nothing left except myself.

However, I will get through. I say this so that even if I don’t believe in it now, I won’t leave a bad omen by being all negative. I will make this transition and it may be hard, but it’s also good. No matter what, my husband loves me.

Fear of Demands

I admit it, I have a fear of demands. I originally wrote that I have a fear of independence. In fact, I thought for a while that I may have dependent personality disorder. People with DPD have a pathological need to be taken care of. They can’t make everyday decisions without a lot of counsel, need others to take full responsibility for the bigger decisions in their life, and may even stay in abusive relationships out of fear of losing someone to take care of them. They appear incredibly easy on therapists at first, agreeing with their every counsel. On a deper level though, this is just a way of maintaining the care relationship.

I still believe I have some traits of DPD, but this last bit is where I realized dependence may not be the core of things. I am not easy on a therapist at all. In fact, I remember being seen as very defiant when I was on a locked unit in 2007 and 2008.

I do have a fear of practical independence, I admit. Then again, it’s more a fear of other people taking contorl over what I can and can’t do practically. I’d love in fact to have full control over deciding what I can and can’t do independently. My fear is not of doing things independently myself, but of other people deciding I can do them independently.

This is where pathological demand avoidance enters the picture. PDA is a conditon along the autism spectrum in which people have a persistent anxiety of direct demands placed on them. They often appear defiant, but underneath this is a deep fear. It could be fear of failure in some ways, but it’s more.

There is an interesting aspect to my fear of doing things independently, and that’s that I can do them fine when no-one’s watching me. Also, when I take the initiative to do things independently I can do them much better than when others tell me to do them. I remember E-mailing around for a therapist to treat my dissociation in 2012 and I had no problem doing it. (I stll had anxiety about it, of course, but that’s more fear of the response.) I called the social consultant and client advocacy organization last week and was fine. On the other hand, when someone asks me to make a phone call or E-mal someone, it’s much harder for me. I also took the initiative to go live with my husband. Then, when my staff took away my control over it and demanded I show certain capabilities if I wanted to live with him, I backed away.

Unfortunately, the care system is built on the premise that psychiatric patients just need a little pushing to do things independently. Despite the rehabilitation and recovery models, which I applaud, people are only allowed to take control if they’ve shown their competence first. I cannot do this. It scares the crap out of me. I want recovery without having to prove myself. Hopefully, I’ll be able to accomplish this when I live with my husband.

Linking up with Finish the Sentence Friday. A little late, i know. The prompt sentence was: “One of the biggest fears that I’ve ever had to face…”.

Out of My Head, Out of My Reach

I have been feeling a lack of motivation for blogging lately, especially in English. I blame, in part, the restart (again) of my Dutch blog, but I also blame the fact that just too much is going on in my mind that I don’t know how to put into words on paper (or on the computer screen, of course). Today, I got myself yet a couple more journaling guides, and one of them is 53 Weekly Writing Retreats by Mari L. McCarthy. I subscribe to her newsletter and have been thinking of joining one of her journaling courses, but I never followed through.

The first journaling exercise in this 53 weekly retreats thingy is called “Goin’ Outta My Head”. It asks you to write what’s on your mind. This may not exactly turn into a blog post that’s going to go viral (not that any of my blog posts will ever go viral, ha), but I don’t care. Here goes.

I’m having huge difficulty imagining I’ll ever be ready for life with my husband. My husband wants me to practise coming to our home on a MOnday or Friday (so after or before the week-end we’ll spend together) to practise time alone where I can’t reach out for support. He wants me to use my limited accessible long-distance transportation for this. The tiny village is not in the same short-distance transportation area as the institution, so I can’t use the virtually unlimited regional accessible transportation service. Not that I have a regional accessible transportation pass yet. Anyway, it sounds logical that I’d use my limited transportation for rehabilitation rather than socialization. Or not. I am supposed to visit a friend at the other end of the country on Thursday, but the bidirectional journey costs me about half my allocated transportation kilometers. I’ve now setteld on going part-way by accessible transportation and part-way by train, thanks to a great service that allows consumers to combine accessible transportation with guided public transportation.

However, I’m completely overwhelmed by the whole idea of having to live with my husband in four months. He works full-time. We live in a tiny village where the nearest support agency is almost 20km away. We don’t have a clue whether I can get on-call support at all. We don’t even have a clue where to ask these things, and yet, because we moved out of area, social work isn’t going to help us. And because it might slow down my rehabilitation process, the professionals in control won’t let me go to an institution that is within our area.

I like our new house far better than the old one and, besides, it’s where my husband feels at home. I have never had a place where I felt at home at all, and I don’t want to make my husband feel out of place. The care in our old town isn’t great either. Besides, there’s just no going back. I agreed to move to the tiny village and we’ll have to deal with it.

However, because the powers-that-be take no responsibility for getting me proper care but are refusing to let me go to an institution that will, I feel like all responsibility rests upon my shoulders but I have zero control. I got this whole ball rolling with my comment, over a year ago, that I want to go live with my husband, yet now the ball is completely out of my reach.

By This Time in Life…

Last week, the Finish the Sentence Friday prompt was: “I thought that by this time in life, I’d…” I discovered it on Thursday already but was busy all week-end traveling to my parents, being at their house and attending a concert and then traveling back. I can’t link up my post anymore, but that doesn’t keep me from writing about the topic.

I have written many posts about my dreams for my adult life. When I was a young teen, I dreamt that by the time I turned thirty, I’d have completed my Master’s degree, gotten a steady job as a high school teacher and become a Mom of three (technically four, because in my dreams one pregnancy would always be with twins). Obviously, this was before the economic meltdown, because I dreamt of being a teacher within a year of earning my Master’s degree. Interestingly, though obviously these three or four children had a Dad, I never imagined meeting the man of my dreams.

Obviously, these dreams were unrealistic, though I held onto some version of them till I landed in a psychiatric crisis and had to be hospitalized. It is once again strange that, even though I met my now husband before being hospitalized, I just thought I’d meet someone “someday” and was busier with thinking up my career than thinking up relationships.

Later on, I adjusted to the idea that I would never be a high school teacher, speech-language pathologist, or anything earning me money. I did enter a relationship and get married. Still, I had and to some degree still have a hard time fitting in that one success into my life story. I love my husband and am hopefully going to live with him this summer. Still, once I landed in a psychiatric crisis, I abandoned all my dreams and replaced them with the idea that I’d be in residential care for the rest of my life.

I seriously need to let go of this idea that, if my dreams of a college degree, a job and a child or four can’t come true, I can’t get any sort of meaningful life. Maybe I can’t have the life I imagined for myself. Maybe I won’t ever live in the United States – because that was another dream of mine. I can however have a life with my husband and our two cats in our nice home in the tiny village here in the Netherlands. I really need to work towards that goal.

Disordered Eating: A Cry for Help

One day when I was probably in seventh grade, I read an audio magazine for blind teens. It was really a mixture of its own content with content from other teen magazines read aloud. One of the articles from another magazine was about an eating disorders unit. I just remembered this as I read a passage in J.J. Johnson’s Believarexic, in which Jennifer remembers learning about anorexia for the first time in fifth grade and wondering how the celebrity who died of it, got as skinny as she did. Later on, Jennifer learns about people being hospitalized for eating disorders. She envies them because of their size but also because of the attention they get.

This hit home with me. Back in seventh grade, I had already firmly embarked on the binge eating boat, but since I was at a healthy weight for my age and height, I didn’t notice my eating had spiraled out of control already. I remember once, probably in the same year, being confronted by my classmates about getting five candy bars out of the vending machine and eating them all in one sitting. However, I just got annoyed and didn’t realize that my classmates may have wanted to protect me from unhealthful choices.

We didn’t learn about binge eating disorder or compulsive overeating in health class. All we learned about eating disorders was about anorexia and bulimia. I even did one of my gifted program projects on these eating disorders. I didn’t tell anyone that, as I was writing the paper, I was trying to figure out how I could become anorexic.

No, I didn’t “want” anorexia, like some teens say they do. No-one consciously decides to develop an eating disorder. But I did want the perseverance that I perceived anorexics had. So I began keeping food diaries. This was before I had access to the Internet and I couldn’t read packaging, so I couldn’t check calories. In truth, as I look back at my food diaries of the time, they show a pretty typical overeater’s pattern. But I wanted to have some control over my food intake by keeping these diaries. Not that it worked, of course. Over the years, my binge eating got worse.

Back to the article about the eating disorders unit. For some reason, I felt compelled to be like these patients. I don’t know whether it was pure attention-seeking. I mean, I got plenty of attention from my parents and teachers. What I might’ve been missing was someone who saw how much I was struggling. Maybe, if I became anorexic, they’d see how miserable I was.

The other day, I had a meeting with my psychologist. She wa spushing me to take steps towards independence in preparation for my move in with my husband. I can’t remember whether she said so, but she gave me the impression that she felt I was doing better because I had much fewer meltdowns and emotional outbursts. In truth, I may be a little better, but I still have a pretty miserable life and feel pretty crap. Instead of becoming self-destructive or aggressive, I lie in bed or resort to overeating. A fair quality of life is not just not being a pain in the neck, but also being able to experience pleasure every once in a while. It isn’t that I never do, but it’s quite rare that I do things that bring me any sort of satisfaction. For example, I don’t craft nearly as much as I used to, because I can’t handle the noise and crowdedness at day activities.

I was also telling my psychologist that I’m completely dependent on my treatment team. What I meant was close to the exact opposite: I have no control over what goals are set for me, but it is my sole responsibility to reach them.

In a sense, maybe this whole disordered eating thing is a way of showing peope I need help. It sounds so pathetic though: someone who’s nearly thirty-years-old needing to be taken care of like a little child. IN truth though, often I feel that vulnerable.