People with Asperger's get migraines
People with autism feel very stressed in all areas of life. This was not recognized as a problem for a long time, and it is only gradually that people are beginning to deal with the issues of stress and relaxation in connection with autism. Those affected themselves describe very clearly that they want support in the context of therapeutic measures above all with regard to everyday stress - that is, help with how they can protect themselves well in such moments (Vogeley 2012; Preißmann 2013). This shows how stressed they feel and how important this topic is. It is important to ask about the experiences of those affected and to observe the strategies that people with autism have worked out for themselves. In this article, many affected people have their own say and describe what helps them. Your solutions should stimulate you to find individual help in order to get the most out of everyday life.
1. Common causes of stress
What a person perceives as stressful varies from person to person: Working under time pressure, high pressure to perform, external control, existential fears, family or partnership conflicts, pain or trauma are just as much a part of it as serious illnesses or the death of loved ones.
In autistic people, however, in addition to these general stress triggers, there are others that do not play such a big role for most other people:
Social contacts; they are usually perceived as the most strenuous. Although those affected often very much want to be together, the contact means a great effort, even if it is perceived as beautiful and pleasant
Changes, especially those that were not previously known about the meaning and purpose
Difficulties and misunderstandings, e.g. B. in the communicative area
Misunderstanding and teasing on the part of the environment
unfavorable work situation with often inadequate work content (far below one's own possibilities), lack of support and unsuitable framework conditions
Inadequate psychosocial help with simultaneous realization of the need for help
unfavorable social changes and expectations ("always faster, more and more effective", demand for teamwork etc.)
the increasing concentration of sensory stimuli also in leisure time through shopping centers, train stations, etc., but also through social media
own personality traits such as perfectionism or the inability to trust other people and to delegate tasks to them.
The following report by an affected mother illustrates the great stress that everyday life often means for autistic people. If there are also unplanned and difficult situations, the stress can often no longer be compensated:
“Music stresses him out and triggers unwanted reactions in him, as do many people, family celebrations or school trips. He doesn't like extracurricular events because the uncertainty of the process already stresses him. Everything that he cannot calculate stresses him out and builds up a kind of psychological pressure. Then he asks the same question over and over to relieve that pressure. The question of what he wants is just as stressful for him as unexpected visitors or strangers ringing the doorbell who may want to enter our house. Craftsmen are the, super-GAU‘, because in the worst case scenario they even have to go to the toilet.
It becomes difficult when you want to offer him too much. Visiting an amusement park gives him more stress than pleasure. While shopping, he is stressed by the music and the many loud people, whereby I stress that he has to look at the expiration date of every product I want to buy. What is a great joy for many people in the summer - namely buying a few scoops of ice cream from an Italian - means an unbelievable challenge for him: You have to queue up, get a quick overview of the selection and then order quickly because behind so many other people are waiting for you " (N. Schinhofen, in: Preissmann 2017, p. 55).
2. Strategies for coping with stressful and crisis situations
Many autistic people develop numerous strategies over time in order to be able to organize their everyday life in the way that is good for them. The most important measures are to be presented here. Of course, it is important to select individually suitable aids in each individual case:
Difficult situations that are too demanding for the person concerned are often avoided as far as possible. This can be a stay in a large shopping center, a visit to a disco or physical contact. You always have to weigh up what is possible and what will be too much: “I'm happy that some days I can just read and other days I can only sew or write. And then I am happy again about the smell of freshly mown grass, the scent cloud over the rape field, the smell of rain or the beautiful shape of a snowflake. All things that I used to see and perceive, but when the stress did not allow the joy " (H. Junker, in: Preissmann 2015, p. 45). - “It makes me happy to read a book, to enjoy the moment of calm in the afternoon sun on the balcony, to admire the first snowdrops and crocuses in spring, to watch the squirrels climb in the tree. I don't have to surround myself with a lot of people just to meet the average of society " (S. Fischer, in: Preissmann 2015, p. 47).
Social withdrawal as a special form of avoidance plays a very important role. The constant presence of other people means that many of those affected are overwhelmed, they need frequent phases of being alone in order to be able to recover and relax: “The breaks, which seemed to be uncontrolled, chaotic and without any rules, were also very difficult. Sometimes during these free times I would sit in the school toilet, which became a quiet haven for me when the chaos around me got too big (...). It would have been a great help for me if I could have spent this free time in the classroom or in the student library etc. " (Preissmann 2013b, p. 18).
Those affected often react to the frequent misunderstandings and conflicts in dealing with other people by withdrawing, even though they actually wanted to be together. Especially during puberty, the differences to those of the same age often become particularly clear: “The other children quickly learned the best way to show me off and pull on me. I was a simple victim: I was very gullible and occupied myself with »baby stuff« because I was still looking at Sesame Street, listening to children's tapes and putting on sweaters with children's motifs ” (C. Meyer, in: Preissmann 2013b, p. 23). But fulfilling friendships and relationships also work like a “miracle weapon” against pressure and frustration. Those who are supported by other people have significantly fewer stress hormones in their blood. So it is important to also help autistic people to build satisfying social relationships with people who accept them, who like them and who can get involved with their particularities: “For me, meetings have to be reliable, regular and plannable. But very few people get involved, they lose interest very quickly under these conditions, and it is very difficult for me to get involved with new people or to get in touch with them at all. " (S. Merz, in: Preissmann 2015, p. 40).
Activities with caregivers who take the particularities of those affected into account are very important (cf. S. Dietsch, in: Preißmann 2013a, pp. 18-23). Many people with autism describe the importance of their families: “I enjoyed the time with my family, even if I was sure it was very nerve-wracking. Despite all the stress, I have fond memories of our vacation trips. My parents did a lot with us children, it was nice that they had so much time for us during the holidays ” (C. Meyer, in: Preissmann 2013b, p. 24).
Clubs and associations can also be a good opportunity to make nice contacts: "Since I don't have that many friends, I've learned that it's important to be B. to join church groups or associations to undertake joint activities. For a number of years I have been doing a number of Church activities. Mostly these are children's vacation projects or childcare of any kind. The planning of such projects is also part of it. I always get good feedback from the children " (N. König, in: Preissmann 2017, p. 58).
If the parents want to hug the child, for example, it not infrequently makes itself "stiff" and extremely tense the muscles in order to reduce the sensitivity to the stimulus perceived as unpleasant. Many of those affected also show motor stereotypes such as “tiptoeing”, rhythmic rocking, wild grimacing, repeated turning around their own axis or flapping their hands. These stereotypes occur more frequently in excitement and stressful situations, as they have a very calming effect. Many autistic people describe this: “Other ways to seal myself off from the world when I was being bothered by excessive noise were to bob rhythmically back and forth or go around in circles. The rocking gave me a feeling of calm " (Grandin 1997, p. 53).
Willey has discovered another possibility for himself, an external filter, so to speak, to reduce the amount of incoming stimuli: “Put your hands in front of your face so that you can only perceive the things in the center of your face. Try to focus on the things in the middle in front of you and ignore everything in your peripheral field of vision " (Willey 2003, p. 189).
Dietmar Zöller finally found out that he can overexcite his sense of taste with spicy dishes and thereby switch off strong acoustic or visual stimuli (cf. Zoller 2001, p. 76).
Other measures against overstimulation
Many of those affected have difficulties with their sensory perception, which is often very sensitive. What is too much and when cannot be said in general terms, it is different for everyone and also very much depends on the “form of the day”. In general, however, many different sensory stimuli in strong forms are difficult to bear for autistic people. They cost a lot of energy and then lead to excessive demands, "constant stress", to rapid fatigue and the desire to go to places with as little irritation as possible or to save energy in other ways.
Possible strategies for (threatening) overstimulation are e.g. B. described (cf. Preissmann 2017, pp. 50–51):
retreat to a quiet room, sit down or lie down,
walk in nature, move around,
drink cold water, suck ice cubes, take a cold shower,
Use relaxation techniques that have been learned beforehand and are experienced as helpful,
Use possible aids for stimulus shielding (headphones, blinds for darkening, sound-absorbing partition walls in the office, etc.),
try different foods (fresh products such as fruit etc .; coffee, cola, etc.),
do something that calms down individually (own special interest, rocking back and forth, etc .; often also helpful: cognitive skills such as saying rhymes, mental arithmetic, simple monotonous counting backwards, etc.).
firm pressure on the body, for example from a heavy vest, a solid blanket or other objects,
Hedgehog ball, hot spices, chilli pepper, mustard seeds, horseradish or similar,
Security through the presence of an understanding, calm person (but can also be hard to bear with some people in such situations; they then rather want to be alone),
possibly also medication aids (e.g. aspirin, paracetamol, metoclopramide, perhaps also migraine medication, as the symptoms are sometimes similar),
drink enough (water, tea or fruit juice spritzer, etc.).
“I now notice situations of overstimulation at an earlier stage, so that I can still do something myself. I have found that an aspirin tablet taken in good time in combination with drops against nausea and caffeine in the form of an espresso or half a bottle of Diet Coke can help in good time (...). I used to often lie down on the floor in my room at moments like this and lay my coffee table on top of myself with the tabletop facing down. The pressure quickly calmed me down. What may have looked bizarre was intuitively just the thing (...). I also noticed that I can endure a lot more stimuli on cold days, so that the cold inhibits the absorption of stimuli. I find this a very important finding, because sometimes I can control and adapt the requirements in a targeted manner in this way " (Preissmann 2017, p. 117).
Knowing what to expect makes many everyday situations easier. It is therefore a sensible strategy for autistic people to find out as much information as possible about all new challenges: "If I am well informed - and I usually try to take care of that myself by asking curious questions - then hospitals don't scare me" (D. Leineweber, in: Preissmann 2013a, p. 161).
Autistic people often use their existing intellectual abilities to learn the necessary practical or communicative skills that other people acquire as a matter of course. Examples of this are ambiguous linguistic expressions, proverbs or idioms whose meanings are not obvious to you and which are therefore often simply memorized. In this way, affected people with a high level of intelligence succeed in camouflaging some of their difficulties, which, however, is associated with considerable effort and takes a lot of strength. Here, too, cognitive strategies help again: “I try to only worry about the problems that I can change. That saves me a lot of stress " (L. Klom, in: Preissmann 2015, p. 30).
Challenging autistic behaviors
The autistic behavior with supposedly uncontrolled impulse breakthroughs or other seemingly nonsensical behavior problems is also a form of coping and helps to structure the often unmanageable world and make it predictable. It is by no means intended as a provocation. A precise observation of the behavior and the interpretation with regard to the triggering circumstances are therefore very important components of working with autistic people. "I like to rock or bob buzzing back and forth when I'm tense, and I don't mind if the strollers look at me strangely " (E. Jovin, in: Preissmann 2015, p. 51). - “Martin, an autistic boy, refuses to put on anoraks, coats or sweaters with zippers. As a result, there are always significant arguments ("fights") with his mother. For Martin his behavior is functional because he cannot stand the noises of pulling a zipper " (Theunissen 2016, p. 8). In general, with all symptoms that a person shows and that cannot be classified, it is important to ask what sense and what significance that behavior has for the person concerned. This is the only way to avoid misunderstandings and misinterpretations.
To become active
Persistent physical activities and activities that focus on doing things together with other people are particularly useful, such as cooking, photography, hiking, joint excursions, etc. However, appropriate framework conditions must be in place: “Overall, it seems necessary to me to develop a good stress management mechanism. I have been jogging for this for many years. Most of the time I walk the same route (always just along the river), because this way I save energy (I would have to laboriously concentrate on new paths, because I have a very poor sense of direction). Through the physical strain I manage to put the thoughts (...) that have accumulated in everyday work into order. Only with a certain order can I start working out solution strategies for problems " (N. Höhlriegel, in: Preissmann 2013a, p. 65). - "Being physically fit is really recommended. Regardless of whether you have to climb stairs or climb mountains, it no longer makes any particular effort. Since I've been riding my bike, my stress level has also been lower because the body's own breakdown processes of the hormones responsible for stress are supported " (M. Behrendt, in: Preissmann 2017, p. 33).
Unexpected events and changes of all kinds are among the biggest problems in life for people with autism. Since they always feel stress when they are surprised by things or situations that they did not expect, it is helpful in all areas of life to provide them with as much information as possible, to announce changes in good time, etc. This sometimes also applies For other children very happy events such as Christmas presents, but which can cause stress for those affected. Then it can be useful to provide previous information here as well: “She also no longer received 'surprise gifts', but was 'prepared' for them before Christmas. So she could be happy about these new things and was not 'overwhelmed' by the many new impressions "" (M. Bayer, in: Preissmann 2013b, p. 38).
Living in the here and now
One possible strategy for making life predictable is living in the present. Many of those affected describe this: “When I think about the future, it only scares me. I feel helpless and at the mercy because I can hardly control anything from the here and now. I can hardly bear the fact that I can't even know for sure what job I'll work in, whether I'll be able to work at all and earn enough money to live on. Since these thoughts create me so, I just suppress them " (Cobbler 2007, p. 254). However, living in the present is not just about avoidance, it is described as extremely relaxing and rejuvenating (cf. Preissmann 2015).
In professional terms, for example, self-employment can also be a coping strategy if the person concerned notices that he is employed e.g. B. is unable to cope due to the expected flexibility or frequent changes, and if he has the appropriate qualifications that enable this measure. But it is also possible to improve the framework conditions in other professional situations: “If it gets dark earlier again in the evening, I finish my work earlier so that I can get home while it is still light. In addition, I usually interrupt my work in the afternoon and go for a walk at a good pace. These measures help me to stay relaxed (...). It took me some time to admit to working less than many other people. I became seriously ill until I began to understand. Understanding that it makes sense to make sure I'm happy at work and not constantly under tension " (I. Köppel, in: Preissmann 2015, p. 67). Overall, such a reorientation is conceivable in all areas of life.
Use of external help
Support can be found for many difficulties in everyday life if one is looking for it: Help with shopping, for example, with leisure activities, with living, with visits to the authorities and the doctor or with organizing social contacts. While intensive support is initially necessary in all areas of life, this can often be reduced significantly after a while, as autistic people are also able to learn skills and abilities that allow them to become more independent in everyday life. The diagnosis of an autism spectrum disorder or the severely disabled ID card also belong in this category and can be of great help in improving contact with the environment. Society still approaches people who seem “different” with aversion rather than openness and understanding, as long as the background is not known.
Use of therapeutic aids
Therapeutic support can help you to develop your own identity, to accept your own difficulties and peculiarities and to learn to deal with them better, but at the same time also to use the existing strengths and resources as profitably as possible in order to live life as well as possible according to your own wishes and needs To be able to shape needs: "For me, the long therapeutic support has significantly improved my independence and, above all, my joie de vivre. I can discuss difficult situations with my therapist in order to then work out ways in which such moments could work out better. Mostly it is about contacts with other people in the professional as well as in the private area (...). Dealing with feelings can also be trained in therapy, you become more confident in doing so, the therapist's own examples are particularly important for this. It helps me a lot if she reports from her world of experience or experience. Even today, she often lets me choose from several options if I don't know how I felt in different situations. So she gives me examples of how it is with other people or how it could have been with me. I benefit very much from this approach " (Preissmann 2017, p. 105).
Special interests, routines and rituals
People on the autistic spectrum rely heavily on security and stability in their lives. Changes, strong sensory stress or the lack of structure are great challenges, they cause fear and can become a burden. Fixed rituals that regulate togetherness or the daily schedule contribute significantly to stabilization and relaxation. Routines and rituals are therefore important instruments for self-reassurance, especially in difficult times: "Routines and rituals that recur reliably are also important to me. This also explains my love for Christmas. It doesn't matter whether I'm okay or not, whether I'm tired, sad or happy, healthy or sick - it will be Christmas every year. For every person and also for me. There is something tremendously comforting about that. The world is changing rapidly, stability and security have become rare, but rituals are reliable and provide security. That makes them so important to me that I specifically incorporate them into my life, especially in difficult and stressful times. It can then look like that in these moments I structure my day very closely and plan it in a targeted manner as it is good for me. It is important to have at least some control over your own life and to be able to make your own decisions " (Preissmann 2015, p. 11). Anything that leads to being in control of your own life and being able to determine it yourself is positive. It is unfavorable to completely relinquish control and have to live completely controlled by others, because a lack of control and a lack of security create fear and stress. People with autism must also be instructed to actively participate in determining their own content, measures and goals within the scope of their possibilities.
The special interests of autistic people are also part of the rituals, so they should be used as an important resource and by no means be banned completely. In many areas of life, including at school, they are important for motivating people to acquire new knowledge and to acquire further knowledge.
Communicating despite a communication disorder
People with autism find it difficult to come into direct contact with other people. But it is also important for them to work out ways in which they can communicate with others. Many of those affected describe how helpful writing is for them: “Putting my experiences into words has helped me get over some of the bad times in my life. Writing helps me to organize things and to make me aware of connections. When I come home in the evening shaky, overworked and overwhelmed by the excess of stimuli in the world outside, I can gain some distance while writing " (Cobbler 2007, p. 281). - “You should get autistic people to write if you can. Namely, the chaotic perceptions can be mastered by writing " (Zoller 2006, p. 80).
Autistic people feel “different” from other people, they have different interests and different goals for their lives. While they usually try to adapt at first, over time they often find that they are not doing well: “I lived conformistly for many years and tried to adapt to my environment. Tried to work. Tried not to attract attention. Got twisted Was afraid of losing my job. The consequence was that I became more and more limp, more depressed and sicker " (H. Junker, in: Preissmann 2015, p. 44).
After all, with some life experience, many of those affected manage to organize their very own life in a way that suits them and to live their individuality as authentically as possible. This is often extremely liberating and relaxing, honest and more appropriate: “The pressure to behave appropriately for my age has decreased. My behavior became more authentic and has remained so to this day. Today I take the rest times faster that I need to stay satisfied " (L. Klom, in: Preissmann 2015, p. 29).
After the long search for your own identity and for the acceptance by others who determined your own life over long stretches, there are simple statements like: "I eat, drink, sleep and work as it happens, filled with life and freedom!" (shepherd 2010, quoted in bird 2012, p. 9) deeply exhilarating and also encouraging for others affected. Finding your own way is possible, and helping with it is perhaps the most important support one can offer autistic people.
In the course of time, with the right support, a very satisfactory and stable life situation often emerges, which many of those affected are very happy about.
Of course, many things are and will remain difficult - every day, including in my life. But I've found happiness in my job, I'm a doctor and author, and I've got jobs that fulfill me. I took the path and pursued the goals that I myself believed to be right, and I was fortunate that ways could be found at the crucial points for the difficulties that arose. I am infinitely grateful for the patience of the lovely people who support me and help me to develop strategies for my life.
Gawronski, A., Pfeiffer, K. & Vogeley, K. (2012): Highly Functional Autism in Adulthood: Behavioral Group Manual (with online materials). Weinheim: Beltz.
Grandin, T. (1997): I'm the anthropologist on Mars. My autistic life. Munich: Droemer Knaur.
Preißmann, Ch. (Ed.) (2013a): Asperger's - life in two worlds. Stuttgart: TRIAS.
Preißmann, Ch. (2013b): Surprisingly different: girls & women with Asperger's. Stuttgart: TRIAS
Preißmann, Ch. (2013c): Psychotherapy and counseling for people with Asperger's Syndrome. 3rd, revised. Stuttgart edition: Kohlhammer.
Preißmann, Ch. (2015): Happiness and life satisfaction for people with autism. Stuttgart: Kohlhammer.
Preißmann, Ch. (2017): Autism and health. Stuttgart: Kohlhammer.
Schuster, N. (2007): A good day is a day with savoy cabbage. Berlin: Weidler Buchverlag.
Theunissen, G. (2016): Positive behavioral support in people on the autism spectrum. An evidence-based approach to dealing with challenging behavior. In: Autismus 81, 6-21.
Vogel, J. (2012): Autism. Difficulties and coping strategies: Review of the book "Stars, Apples and Round Glass" by Susanne Schäfer. Munich.
Vogeley K. (2012): Be different. Asperger's Syndrome and Highly Functional Autism in Adulthood - A Guide. Weinheim: Beltz.
Willey, L. H. (2003): I'm autistic - but I don't show it. Living with Asperger's Syndrome. Freiburg: Herder.
Zöller, D. (2001): Autism and body language. Disturbances in signal processing between head and body. Berlin: Weidler Buchverlag.
Zöller, D. (Ed.) (2006): Autism and Age: What Autistic People, their loved ones, people who work with them and associations have to say on the subject. Berlin: Weidler Buchverlag.
Christine Preißmann, Dr. med.
Dr. Christine Preißmann is a doctor specializing in general medicine and psychotherapy. She was diagnosed with Asperger's Syndrome at the age of 27 and found answers to many questions in her life. She is currently working in the addiction area of a psychiatric clinic in southern Hesse, where she is doing quite well, as the pre-planned and highly structured daily routine suits her very well.
Through her lectures and publications, Christine Preissmann would like to inform about the life of people with autism and report on their wishes, ideas, resources and difficulties in order to contribute to a greater degree of awareness of autism in all its facets and to a better understanding of the people affected .
The fact that she was “somehow a little different” from others was noticeable in childhood. Instead of climbing or painting, she preferred to deal with flight plans for Frankfurt Airport. "I had great difficulties playing with other children, and actually preferred to be all by myself," she looks back. Because autistic people often perceive sensory impressions much more intensely, everyday school life with its noise and the crowds became a nervous ordeal. Nevertheless Preissmann bit his way through and studied medicine. Her ability to memorize quickly was an advantage here, but she was increasingly overwhelmed by social university life. The constant overstimulation manifested itself in headaches and restlessness, when it got very extreme, sometimes only helped her to lie flat on the floor and lay her coffee table face down on her body: “The pressure calmed me down quickly. "
The consequences of the exhausting struggle made themselves felt in my mid-twenties. Preißmann became depressed and went into psychotherapeutic treatment. “I was lucky that the therapist knew about the autism spectrum. It was a great relief to know that there was a term for it, ”she says today. After the diagnosis, she was able to tailor her everyday life to better suit her needs with the support of her therapist. However, many other affected people are denied this help. Preißmann therefore advocates with her books and lectures to bring the topic more into the public eye. People with an autism spectrum are by no means a fringe group: The frequency is estimated at around one percent of the total population - the number of unreported cases is probably much higher.
Today Christine Preißmann has her life under control. She moved out of her parents' house a few years ago and now lives alone in Darmstadt. Establishing and maintaining contacts is still very difficult for her, she says. She still likes to deal with flight plans as much as she did as a child. Her encouraging summary: "In the meantime I organize my life in such a way that it is not only bearable, but fulfilled."
The latest books by Christine Preißmann:
• Autism and health: Recognizing peculiarities - overcoming hurdles - promoting resources. Stuttgart: Kohlhammer, 2017. (Review on page 80)
• Happiness and life satisfaction for people with autism. Stuttgart: Kohlhammer, 2015.
• Live well with an autistic child. The resilience book for mothers. Stuttgart: Klett-Cotta, 2015.
Email: [email protected]
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