A spectronaut on his way to the planet of the apes E-Book

Ramona Suter

• Herausgeber: novum publishing
• Kategorie: Gesellschafts- und Liebesromane
• Sprache: Englisch
• Veröffentlichungsjahr: 2024

Seitenzahl: 207

Beschreibung

"That's a special bra!" No woman wants to hear this sentence when her boyfriend sees her in her underwear for the first time. If you're in a relationship with someone who has an autism spectrum disorder, it's better to question social norms than to take them seriously anyway. Speaking of "norms", I'm not completely normal either, by the way, because: you can be crazy even without a diagnosis! So what is it like to be in a relationship with a man who ticks differently in many ways? And that while you actually have enough to do taming your own monkeys in your head? Honestly, it's refreshing, enriching and valuable, but also incredibly challenging and exhausting. Creativity and patience are just as important as a sense of humor and healthy self-esteem.

Leseprobe

Dedication

I dedicate the book first and foremost to my husband, of course, who gave the word "love" a new meaning and without whom this story would not exist. I dedicate it to my younger self, who has always enjoyed putting my experiences into words. I dedicate it to my two angels in heaven, who have always treated my texts with appreciation. I dedicate it to my dear Sara, without whom my sailing boat could never have reached the right draught. I dedicate it to Nathalie, whose hobbies include self-optimization as much as mine. I dedicate it to Behare, who has known my monkeys since childhood. I also dedicate it to Alessandra, who has approached my relationship with an open mind from the very beginning. I would like to dedicate it to my two sisters for accepting my husband into our family without any ifs or buts. And last but not least, I dedicate the book to Helen, Pädi and my little niece, because they are indispensable in closing this precious circle.

The penguin in the polar bear costume

Whenever someone asks me whether I want to hear the good news or the bad news first, I opt for the latter. That's why I originally intended to start my book with all sorts of unkempt hairy matters. I wanted you to hike through Jammertäler right at the beginning so that you could enjoy the view from the Jubelhorn a little more afterwards. However, I used to withhold happy news from my fellow human beings for a very long time in order to catch the perfect moment - often so long that some of them still don't know that I'm no longer wearing diapers. We don't want that because, as we all know, we never know when our very last hour has come. So, for once, I'll start with a little highlight at this point. Something that has made it clear to me how a "worst case" can grow into a "best case" and that I am the only one who decides how much value I attach to my strengths.

At the beginning of the relationship, I could never have imagined traveling with my husband, let alone abroad, let alone by plane. However, this didn't bother me too much, as I wasn't particularly keen on traveling myself at the time. My daily trips to sofa houses were enough for me. There were various reasons for this, which is why I still considered vacations together to be utopian anyway. First of all, his unstable mental state would not have allowed it and the addiction monster would have always traveled with him in his suitcase. Furthermore, I thought it would be extremely difficult to plan a project that would make him uncomfortable because he would have had to leave his comfort zone. And as if that wasn't enough, my husband also suffers from a fear of flying. He is definitely not alone in this. Interestingly, some people are more afraid of things that cannot be controlled or can only be controlled to a limited extent. These include, for example, the aforementioned flying or the weather or war or death or the existence of aliens. Why? Possibly because of the feeling of a certain powerlessness to which we are exposed. The other part, on the other hand, is more frightened by the controllable. Why? Possibly because of their own fear of failure, which they are also exposed to when they mess up. Personally, I belong to the second part. I prefer to blame the aliens or whatever they may be carrying. Of course, I also get a queasy feeling when the plane jolts. But firstly, it doesn't tend to make sense to me personally to be scared of things that I voluntarily choose to do but that I can't control. Secondly, I'd rather die on a trip to Florida than die like the Chinese poet and courtier Lia Bai, who died in an intoxicated attempt to embrace the moon's reflection in the water. However, I have enough empathy to understand the other side. One of my sisters also suffers from a fear of flying, especially when it involves long distances. She once managed to confuse a sedative tablet with Imodium. The placebo effect worked reliably, but so did the constipation. Neither tablet would have worked wonders for my husband at the time.

Unfortunately, shortly after we started dating, I began to develop a penchant for exploring the world outside the couch zone. Up to that point, I hadn't traveled very much compared to my peers, but I had traveled to the United States of America once for three months. To this day, I have fond memories of this time, which I would not want to miss and which sparked my enthusiasm for this often somewhat frowned upon country. At that time, however, I had largely left the anticipation and organization to my partner. For various reasons, it was difficult for me to keep up with his euphoria. Now, surprisingly, I found that I actually loved organizing and planning, not necessarily cleaning the toilet bowl, but a trip to the countryside, for example. I realized that I had a knack for making things work under difficult conditions, and I could put this resource to good use in our relationship.

I've always ticked a little differently to my peers, even if, apart from a few tics, my behavior has never been so conspicuous that I would have had to make do with the school psychology service. I think I was usually able to compensate for my supposed weaknesses relatively well and had also learned to adapt from an early age. Even today, however, my battery is often drained a little faster than that of others and I am still very sensitive, tend to brood, sometimes need a little more time than my peers and find it difficult to concentrate on things that don't interest me. In confrontation with our standard society, this led me to believe for a long time: you're too lazy, you're too stupid. My strengths were lost in this self-deprecating way of thinking. Paradoxically, I found them again exactly where many others would go under in return. It's still hard to understand how I can be happy in a relationship that is riddled with so many challenges. Some people can't or don't want to imagine that I could even begin to be happy in it. We are like the eighth wonder of the world. However, when I think about my strengths, it's at least not difficult for me to understand myself: I'm good at practicing self-care, communicating clearly, reflecting on events, analyzing things and making plans. I love to think creatively about how to turn something that seems impossible into something possible. And it is precisely these strengths that I can actively incorporate into my relationship with my husband. It's not that I have to put out fires all the time, but that by using his and my strengths, there are fewer and fewer fires. My soul sister Sara told me some time ago how her father once said to her that she reminded him of a penguin who wanted to be a polar bear. And Sara has indeed developed the necessary self-confidence to not only want to be a polar bear again and again, but also to be able to be one. I find this a truly magical imagination.

As I didn't want to indulge my new-found desire to travel alone, it actually made tactical sense to be as clever as possible when I first came around the corner with the desire to go on vacation to Ibiza. How could I convince my husband, who was mentally more stable by now but still suffered from a fear of flying and showed little enthusiasm when it came to traveling, to take off with me? The first thing I did was to tell him how well the hippie flair of the island would suit us. I added that the flight would be roughly in line with my attention span and would therefore be rather short. I then showed him a promising video in which the island was presented at its best, and finally I created a highly professional Power Point presentation that left no questions unanswered. Lo and behold, my husband was convinced that a trip to Ibiza was exactly what we needed. And me? Not only had I achieved my goal, but I'd also had a blast making the necessary arrangements. I had made sure that everything was as "asperger-friendly" as possible: The luggage was collected and checked in by the train company, which spared us from having to stand in a long queue at the airport for the first time. This would only have increased his anxiety and nervousness. I had booked in Business Class. It wasn't a bargain, but it meant more comfort. I had also booked the cab that was to take us from the airport to the hotel in advance. If I had been able to, I would have ordered the right weather and the driver at the same time. Interestingly, I realized that I had not only made the trip as "Asperger-friendly" as possible, but also extremely "Ramona-friendly". Basically, I had just gone about it in a way that took away my own fears. That's how we ended up spending our first vacation together in Ibiza shortly after the wedding. It was great and filled me with a deep sense of gratitude. I was grateful to be able to walk along beaches, conquer hills, discover an old town and hear the frivolous room neighbors moan about us with him by my side. I realized that anything is possible if you don't compare the realization of your ideas and wishes with those of others. We didn't have to travel the way Hinz and Kunz might have done, because then we would still be in the aforementioned couch zone and would never have prepared a delicious dinner in our vacation apartment with home-picked rosemary. However, I knew beforehand that comparisons wouldn't get us far and that we would always have to find our own way. Nevertheless, I would never have dreamed of flying across the ocean with him. I was also not yet aware that there was more to me than I thought. I didn't yet know that my strengths were strong enough to get ahead in life. Not only did I slowly and steadily learn to believe in my resources, but I also gradually began to integrate them into my life. I was also more than just a cute, clumsy penguin. I just had to create situations in which I could be more. My relationship is one such situation. One that shows that I am much better off than you might think because I can also be a polar bear in it.

The naked truth

What is this written monkey business all about? Originally, I wanted to devote my book exclusively to various topics and situations related to my husband'sautism spectrum disorder. I wanted to explain the aspects that make our everyday relationship more or less challenging. While writing, however, I had to admit to myself that this was only half the truth and that I should probably also put on paper those things that I would have preferred to play down or conceal. At the end of the day, it is highly likely that this is exactly what interests many people and, in turn, what would interest me.

In addition, it was and is important to me to make the big picture visible. I want to show the complexity of our relationship, and while autism is a relevant component of this, it is not the only one. So this would also be a good time to refer to the tongue twister "comorbidity". For those who don't know what it means: Roughly speaking, it refers to the combination and presence of different diagnoses at the same time. There is often an underlying disease with one or more secondary diseases. However, it is often not so clear which diagnosis can be considered primary and which secondary.

My husband was only diagnosed with high-functioning autism in his late twenties. I say "only" because he assumes that his life could have taken a different, perhaps even less stressful course if this diagnosis had been present as a child and if it had been possible to react accordingly. The latter is of course more decisive for a person's future development than the finding itself.

However, the first diagnosis Applejack received was not autism, but attention deficit/hyperactivity disorder, ADHD for short and formerly known as POS (psycho-organic syndrome). According to a specialist who once looked after him, ADHD used to be an automatic exclusion criterion for autism. I don't know whether she was right. However, as things stand today, the two developmental disorders certainly have parallels, but are also very different in some respects. Just as it almost always is when you compare things.

The hyperactive child who struggled with impulse control and couldn't concentrate very well eventually became what society often refers to as a problem case in adolescence: A young man who receives one diagnosis after another (more on this in a later chapter) and yet seems to fall through all the cracks. A man who begins to consume various substances in his teens and, in addition to cannabis and alcohol, for a decade or so, takes almost anything that is not nailed down. He did not stop at the abuse of medication either. In his career, Applejack has seen the inside of more than one clinic, deceived more than one specialist and caused gnashing of teeth among the team in more than one sheltered housing facility. Fortunately, it wasn't until he was kicked out of the last setting in which we got to know each other as residents (him) and professionals (me) that he slowly but surely began to wake up and face a reality that had been completely clouded by addiction, frustration and bad memories for years.

In the aforementioned residential home, where both he and I were staying, his addiction and borderline personality disorder were the main topics of discussion in team meetings. It almost seemed as if these two diagnoses - although the addiction had not yet been officially diagnosed as such at the time - were causing a kind of competition. Some in the team classified his problems and behavior more under the heading of "addiction", others under the heading of "borderline". Some were of the opinion that his strong mood swings were due to his consumption behavior, while others blamed psychological problems such as traumas he had experienced. Somehow they were all right, but at the time some were slightly more right than others. I will also comment on this in more detail in a subsequent chapter.

What wasn't an issue during his stay, however, was autism. In my opinion, it lived in the shadow of the addiction, because it was so dominant in his everyday life that everything else took a back seat. So autism could neither have been discovered nor meaningfully included in the care. Looking back, it is difficult to judge when the autism might have become apparent at times and when you could have noticed that something was fundamentally different in his head. Every form of difference and abnormality was automatically attributed to addiction and his emotional instability. Only now that Applejack is clean, at least with regard to his most prominent addiction problem at the time - namely the misuse of medication - does it become clear what remains. The more stable he becomes in his mental state, the easier it is to differentiate what could be assigned to which diagnosis and which diagnoses may even have been made incorrectly in the past. It's like peeling an onion. With each layer you peel away, you get closer to the bud inside, while shedding a tear or two in the process.

At the beginning of our love affair in particular, he repeatedly experienced comatose, psychotic states and severe mood swings. I often couldn't really feel and understand him because he wasn't able to do so himself. I knew what I was letting myself in for, especially as I had experienced it first-hand in the residential home, and yet I couldn't guess what emotional states I would find myself in. I knew and at the same time I didn't know.

The whole truth would therefore be the following: The diagnosis of ADHD primarily shaped his childhood, as it was the subject of countless therapies at the time. However, he was never really able to benefit from it, because even this diagnosis - as we know today - only corresponded to a partial truth. For example, the Hamburg Autism Institute writes that around half of all children diagnosed with high-functioning autism also have attention deficit disorder, often with hyperactivity (ADHD). In all probability, this would have been no different in his case and one would not have ruled out the other.

As present as his first diagnosis had been in his childhood, the addiction was just as engaging in young adulthood. It is well known that people with ADHD tend to be more prone to addiction. However, in terms of comorbidity, I would not consider it correct at this point to claim that ADHD is the underlying disorder (as it was first diagnosed) and that addiction is - to put it bluntly - its spawn. If anything, it would be correct to say that half-truths may have prevented important and appropriate learning steps and that healthy resilience could therefore not be achieved. This in turn may have facilitated a slide into addiction.

Only with his most recent diagnosis of "high-functioning autism" has my husband now found something like a home. By no means one in which he can rest and give himself permission to do whatever he wants, since it is now supposedly proven that he cannot do otherwise. It is to be understood as a home in the sense that, after a long search, he has discovered a place that has made a significant contribution to his identification. Perhaps it's a bit like when you return to your hometown after a long time and it seems both strange and familiar at the same time. When I experience situations with him today that seem a little strange to me and realize that similar things used to happen in the sheltered housing facility, I now know that there are certainly behaviours that were not directly related to his addiction back then. For example, if he was firmly convinced that his room had been broken into because utensils that he had very probably misplaced himself were no longer in the same place, this had to do with psychotic states as a result of his consumption behavior. A condition in which, among other things, one can suffer from a strong distortion of perception and sometimes also from delusions of persecution. If, on the other hand, he was unable to justify certain statements that we considered inappropriate, for example, or to understand our displeasure with them, this can be attributed to autism in hindsight. Consumption can change perception. The big difference with autism is that the different perception in some respects exists from the very beginning. Neurotypical people, on the other hand, only see the world with different eyes as a result of consumption.

Countless of the difficult situations that arose in the course of our relationship turned out to be the unsightly product of addiction and consumption. The challenges involved in dealing with such events afterwards were mostly due to autism. For example, I had to adapt my way of communicating with him, as much of what I took for granted was not and still isn't for him. At first, for example, he couldn't understand that when he was unwell, this also had an impact on my own state of mind. "It's my problem, not yours!" he would sometimes say. Nor could he understand that you could be angry because of a series of nerve-racking events and not just because of an individual situation that was currently occurring. He was not familiar with the so-called barrel that can overflow. He was also unfamiliar with the fact that someone needs time after something has shaken them emotionally, and that this time is often not limited to the day of the event. A somewhat limited capacity for empathy can certainly be a characteristic of autism, whereas the assumption that autistic people have no feelings is complete nonsense.

But what is left of the ADHD diagnosis he received as a child? From the outside, many would probably assume that it is his physical restlessness, which manifests itself in the way he constantly steps from one foot to the other or makes rocking movements when sitting at the table. However, this behavior could just as easily fall under the category of "autism", in which stereotypical movements often occur in affected people. My husband and I even suspect that it is neither, but rather resembles a tic disorder of (as yet) unknown origin. Finally, there is also the matter of the concentration problem and his somewhat short attention span. It is not uncommon for him to be unable to remember the content of our conversations. Depending on the situation, this can be attributed to both ADHD and autism. For example, people with ADHD tend to find it difficult to concentrate on things that don't particularly interest them or that may be too much of a challenge for them. As our conversations are mostly about emotional content and Applejack is not so good with emotions, it may well be that his ability to remember things is actually somewhat lower than if I were to explain facts about the universe to him, for example. However, having difficulty understanding and categorizing emotions is also a typical characteristic of autism. This brings us to the question of which came first, the chicken or the egg, or which egg belongs to which chicken. And if he is also depressed at times, is this because the substance abuse has poisoned his brain in the area responsible for releasing happiness hormones - or is borderline personality disorder perhaps responsible? If he can't or won't deviate from his opinion, is it narcissism or autism and where else might mania, hysteria and schizophrenia manifest themselves?

People often have certain images and ideas in their heads when they hear about diagnoses, and often these do not correspond to the (whole) truth. This is because there is a huge spectrum surrounding almost every diagnosis. I also find myself somewhere between a zoological garden and normal madness.

Ultimately, it is up to you and the relevant professionals to make diagnoses that are appropriate. By appropriate, I mean findings that you identify with, without at the same time only identifying with them. Findings that create orientation and words in and for something that was previously chaotic and nameless or even mislabeled. It can be important to transform an "I'm too stupid" into a "My brain works differently". This can be incredibly relieving for those affected and lay a foundation on which to build in the future.

However, the whole truth is that not everything is always as easy and clear-cut as we would all like it to be sometimes, and this fact has to be accepted. Where some diagnose a personality disorder as the cause, others find a pimple on the back to be guilty. People with a mental illness can be deceptive (as can those without), for example by not telling the whole truth or only telling what they think the other person would like to hear. Professionals on the other side can also make mistakes, for example by not correctly assessing behaviors. Sometimes there really is no rule without exception. However, it is important for me to point out that there is still no need to be afraid. Deviations and ambiguities do not only mean a lack of orientation, but also offer you the chance to take new paths, your very own.

I don't presume to always be able to correctly assess which chicken the laid egg comes from. What I do presume to do, however, is to put forward hypotheses, and as we all know, these are not set in stone. Autism - just like other diagnoses - may ultimately provide valuable explanations for certain behaviors, but it does not explain the person as a whole. You can open drawers that seem to fit, but these should only be closed again once the whole truth has been discovered, and this process usually takes a lifetime.