Planning one's daily life as a PAS/I/MD will require the implementation of preventive, adaptive and ...creative measures, in order to maintain daily comfort in this uncertain environment, to maintain social links and to rely on one's own singularities to live the experience of confinement with as little suffering as possible.
Before continuing, it seems important to me to insist on these points:
- Your fear and the emotions you're experiencing are legitimate: Don't judge them, don't judge yourself, don't push them away.
- The situation is exceptional and favours a climate of stress and sensations that will seem new to you. Surprise and astonishment go hand in hand with a feeling of losing control: observing a resurgence of certain symptoms concerning your mental health is completely understandable.
- We don't have enough hindsight to date to guarantee the psychological effects of long-term confinement on at-risk populations such as PAS/I/MD. Socio-economic issues, while seemingly predictable, depend on data that is too complex or shifting to define the direct consequences. It seems relevant to put in place anticipation strategies today and to rely on its capacity to adapt, preserve and be resilient for the individual and common good.
FEAR, ANXIETY AND COMPULSIONS
- The containment situation, the uncertainty about the evolution of COVID-19 and its impact on the world organization generate a global climate of fear. Its effects can lead to cognitive confusion, irritability, and greater vulnerability to collapses or crises of any kind (obsessions and compulsions, panic attacks, increased addictive behaviour, more pronounced mood disorders,feelings of derealization, etc.).
As a PAS/I/MD, strategies can be put in place to accompany anxiety and compulsive behaviour.
- First of all, don't feel guilty. Your brain is an organ: it is not "you". You can't control it by simply deciding to do it. If he was a fractured wrist, would you blame him for being broken? Guilt and restrictive strategies (deciding to skip a meal after a compulsive eating seizure, not washing your hands for an hour, etc.) reinforce compulsions. Avoidance strategies will have the same effect (do not read articles on COVID-19 for fear of having a panic attack, etc.).
- Then find out.The best way to reduce fear is to know what it's about. But don't read everything that's written about COVID-19: choose sources that have been proven reliable and consult them regularly.
-DON’T FIGHT any compulsions, whatever they maybe. Integrating the notion of fighting into an already tense behavioural process adds performance anxiety. A simple protocol to accompany the crisis can minimize or even cancel it:
° Identifying and/or discharging emotion
-CED: If a compulsive eating disorder arises, sit down for a second and retrace your steps. At what point does the compulsion arise? Has it been a busy day? Frustrating? Boring?Anxiety-inducing? In the cases mentioned, the response by ingestion of food may be observed, and the satiety signal may be altered. If you are tired, you should logically sleep. In case of fatigue, the brain responds with an injunction to eat, even if hunger is not felt.
-OCD: The approach is slightly different. Compulsion will be required to cancel an intrusive thought(obsession). However, it is advisable not to dwell on the causes of the onset of either the compulsion or the obsession. Indeed, questioning an intrusive thought or the object of an OCD will reinforce the obsession-compulsion loop and potentially cause the PAS/I/MD to merge with the thought.
Accept that uncertainty is the breeding ground for OCD: events are uncertain enough to favour obsessions and their compulsions. In addition, PAS are more vulnerable to change.
°Sharing and being welcomed
-ED: Ask a selected person if you can benefit from listening to them. If it is difficult to share your feelings, communicating in writing or by video with this person, chosen for their neutrality and capacity to welcome you, can temper an eating disorder. Talking about your frustration, acknowledging a drop in self-esteem, a fear, a fatigue can help release the tension that keeps the brain focused on food intake. Don't hesitate to point out... the things that are difficult for you to specify!
The PAS/I/MD sometimes have difficulty verbalizing the emotions they experience, especially because its emotions are confused or "do not appear in an identifiable order" (In mycase, I am often looking for the "percentage of this or that emotion", I do not feel the precise emotion that makes me list all the others. This is how the confusion in me manifests itself. I start to doubt the emotion I am feeling and 1) I cry or 2) I end up describing the situation in a very pragmatic way, like a case study).
- ForPAS/I/MD suffering from ROCD (relationship OCD), POCD (pedophilia OCD), other impulse phobias, etc., confinement in a couple, family or group can be an aggravating factor in seizures. It is advisable to continue applying the tools learned in CBT.
If you have never had CBT therapy, you are advised not to negotiate with your intrusive thoughts (If your thought, although it seems real, tells you that you are probably a pedophile, let it pass, as you would probably let an annoying earworm song pass, for fear of having it in your head all day. And if you're wondering, as you read this sentence, how can I be sure that you're not a pedophile since the idea has been in your head for ten days,and I'm probably wrong, that you must be one of those people who are trying to persuade themselves that they won't do it but that at anymoment you could potentially do it, but… and if... it's becauseyou're currently in the middle of an obsessive-compulsive loop), don't seek reassurance from your loved ones about the purposeof your OCD, and, above all, don't run away from anxiety-provoking situations. However, it is a good idea to set up isolation areas where you can rest so that you are not exposed to anxiety-provoking situations when you are already vulnerable and tired.
I would recommend that you to get in touch with a CBT therapist in your area if the situation becomes too difficult ona daily basis: mental health professionals are currently offering online consultations by video to overcome travel limitations.
°Moving towards an activity that monopolizesattention
- Compulsions can be avoided by shifting attention to a concrete activity. For a PAS/I/MD, repeated or precise gestures (drawing, linocutting, xylography, cutting, etc.), gathering information on a specific interest and sensory activities or activities requiring precise knowledge can bring immediate relief. Do not hesitate to change activities if and/or when the brain becomes obsessed again.
It is strongly advised against drug withdrawal without medical supervision: the exceptional nature of the situation constitutes a loss of reference points which some PAS/I/MD will appreciate the calm and the absence of sound stimuli.
- Your need for self-stimulation/relaxation may manifest itself more intensely during the period of confinement:having to share a common space where the environment is uncontrollable, having to endure the impact of environmental stress,having to maintain your autistic masking or having to manage total isolation are all reasons to resort to stimming gestures.
Three scenarios are possible :
°If you live in a community and have already talked about your autism, don't hesitate to submit the fact that this need may be more pressing and/or frequent and that it is important for you to practice these actions when they prove to be irrepressible. These gestures can help to avoid meltdowns. However, you can shift your need for stimulation to an activity that occupies your hands, your attention and brings relief.
°If you live in a community and do not want to share your autism, isolate yourself as soon as the environment begins to weaken you or you feel the need to stim, if you can. As said inthe previous example, you can also move your stimming to a manual activity.
°If you are confined alone, accept that your stimming frequency may increase. These are gestures that can draw your attention to the high level of anxiety or emotion you are experiencing and play a role in calming it. You can recognize this need and accompany it to an engaging activity, which will have a similar effect. Adapting your environment can also help to reduce the anxiety you feel.
REQUIREMENTS, EXECUTIVE FUNCTION AND ROUTINE
- The changes induced by the imposed confinement generate contradictory emotions in PASs. The disruptions they cause may affect recognitionand/or satisfaction of needs and executive function. Routine systems can alleviate the consequences of confusion.
- Make colourful lists :
°Classify your needs by degree of importance (vital needs in red / comfort needs in orange / other needs in green) and make three lists. On the first list, write down, for example, drinking, eating, bathing, taking medication. Put times for each activity on your list and set an alarm on your phone or computer for each vital activity. If you find it difficult to think about drinking, mark lines on a bottle and keep it nearby. Keep track of your drinking every hour. There are also free routine applications or task planners for Android on Google Play that can help you get organized.
°If you find it difficult to spontaneously prioritize the steps of a task, create a list that you can tape or display in strategic places. Rather than writing down the steps to be followed, use pictograms of the steps to be completed that will be recognizable very quickly. Writing instructions that are too descriptive can lead to the loss of information.
Sometimes I forget to fully dress. I put on my underwear, my T-shirt, my sweater and my tights. Since I dress all in black, I feel like I'm fully dressed. I almost went out shopping like this several times this year...
The ideal list could therefore be posted in the wardrobe or on the bedroom door, with corresponding pictograms for panties, t-shirt, sweater, tights, and overalls (or shorts) that were missing during the dressing procedure.
°Using erasable markers, you can also draw or write short instructions on mirrors (hygiene protocol), windows, and all washable surfaces.
- Ask for help :
°In the case of solitary confinement: it is not intuitive for some PAS/I/MD to request assistance. In this crisis situation, choose one or two people you trust with whom you will share your possible needs, specifying your difficulties in assessing them sometimes, and whom you can turn to in case of emergency or difficulties. Also leave these people with vital instructions (your building code, the telephone number of a family member, your drug allergies, who to entrust your cat to in case of hospitalization, etc.).
°In case of group confinement :
It is not intuitive for neurotypicals to understand the difficulties encountered by PAS/I/MD. The difference between their cognitive abilities to handle complex tasks (sometimes exceeding the norm) and the complicated management of seemingly mundane daily life can be confusing. It is therefore advisable to explain to those around you what can hinder a good understanding of your environment and to communicate your needs to them when you can identify them. Don't be ashamed to ask for help with things that may seem easy for others to do.
- If your routines are essential to your well-being, stick to them. If your alarm clock was previously set to 6:30 a.m. for work reasons and the prospect of waking up later causes you anxiety, keep that pace. Inform those around you that it is necessary to maintain these routines.
The listing system can also be a good support for PMDs, especially for people with depression, bipolar disorder or borderline low phase people whose cognitive functions may be impaired by exhaustion and confusion.
-Do not hesitate to arrange and classify the daily elements by family to have a better visibility on the weeks of confinement to come: Pasta on oneshelf, canned vegetables on another, etc. Be vigilant about expiry dates, and favour perishable foods to avoid forgetfulness and waste.You can use a sticker system to identify expiry dates without having to systematically check them and transfer them to an excel file or a list posted in your cupboard.
- If you feel like withdrawing from social networks to get away from sources of anxiety, tell your trusted person(s), and give them news by text message at least once a day (establish a frequency protocol together, including a time limit). Agree that the person should contact the emergency services in the event of failure to do so more than x hours after this deadline).
- If you are one of the talkative PAS/I/MDs, remain vigilant about your ability to hold long or successive conversations and about the possible fatigue that social exchanges generate in you (including writing on social networks!). Allow yourself frequent moments of isolation during which you can indulge in a familiar activity or sensory exploration.
- If you are one of the PASs who have information processing disorders, learn to recognize the signs of overload. Confusion, forgetting despite repeated instructions, stuttering, feeling like you have to concentrate on your own words, impaired language and/or syntax are all signs that can alert you to overload.
Take regular breaks in a room with fewer sensory stimuli, or adjust your environment if possible. Don't hesitate to tell the person you are talking to that your tolerance threshold has been reached and that it is essential for you to isolate yourself, even if it means explaining later what this over-adaptation generates in you.
- If the issue of autism has not been raised and you do not wish to address it, talking about your tired ness and explaining the need to take regular breaks may be more than enough.
- In case of difficulty, ask for help!
SHUTDOWNs & MELTDOWNs
- In the event of an autistic collapse, take time to seek refuge in a safe place with less sensory stimuli: since the crisis is there, it is important to accompany it and not to restrain it. Your collapse is essential to the "discharge" and can occur as a result of sensory overload, an accumulation of stress or a sudden change. It can also be impressive for those around you. Autistic collapse can exhaust and monopolize your resources for several days. You can accompany it with visualization exercises (the safe place),meditation, or soothingvideos on youtube (beware of sectarian abberation and charlatans).
- In advance, do not hesitate to communicate to a chosen person the behaviour to adopt in the event of a meltdown. You can also create a list that will serve as a support during a meltdown and prevent the crisis from worsening, or labels indicating your needs ("I want to be alone", "I need to isolate myself", "I need something to drink", "I prefer that we talk later", etc.). If, during a crisis, you are unable to communicate verbally, you can use these labels. The list can also indicate which vital needs you may forget (many PASs may not drink for days at a time) and whether you allow the person to remind you. This clever protocol is also recommended for PMDs whose difficulty in communicating may be reinforced during seizures.
- Same instructions as for an autistic meltdown: create a list of familiar and reassuring objects and/or stimuli and a list of tips. They will be a great asset for those around you.
"During a strong dissociative crisis, I am frozen in place and have difficulty expressing myself.
Do not :
- Ask me to explain
- Speak loudly
- Turn on the television or play music.
- Insist that I come to the dinner table
- Offer to accompany me to my safe place.
- Wait a few minutes so I can settle down and enjoy the silence.
- Touching textured surfaces reassures me, offer me some grammed paper to touch.
- I really like fluffy and soft surfaces, suggest that I stroke this plush toy that I often have on me.
- Tell me gently about the environment around me and the smells I like."
- See the paragraph for friends and family. Adapt the imposed space to your needs, making sure you can create afallback area. You can also practice the Safe Place Exercise by breathing in quietly through your nose. Not making noise will simply prevent high, short and tense breathing. Not making noise through the nose will promote fuller, softer breathing.
- The myth of the solitary PASs who do not communicate with the world still persists, to the point of conveying clichés such as the famous "You don't look autistic.". If loneliness weighs on you and you need to share with someone: say so. It is not easy for others to guess your needs, and I am sure that some people will be delighted with your presence or intervention.
Physical loneliness can also be a strange feeling: communicating with others only by technological means is an insufficient compromise, but it is the only one we have during this crisis.
- If you prefer to be alone and communication with others takes up a lot of energy, report this as well. Although it is not common in current social codes to leave a discussion in progress, perhaps it would be interesting to try the experience of saying so, starting with the fact that it is difficult for you to continue because of your tiredness and that you would like to isolate yourself.
- If you are a PAS/I/MD in a community, please consult the paragraph for the entourage beforehand. Be careful with your drinking: somePAS/I/MD have attacks of acute diarrhoea (sometimes even digestive endometriosis) and dehydrate quickly. If you are unable to eat, drinking small amounts of water at short intervals throughout the day can counteract the effects of digestive problems. Foods rich in FODMAP can aggravate the attack and affect sensitivity. Do not hesitate to explain to those around you the effects of your PMS and the help you need to facilitate this period.
- If you are alone and PMS is having a destructive effect on your mental health, don't hesitate to contact a chosen person. If you feel that your thoughts or condition is a danger to yourself, don't hesitate to contact your local psychiatric emergency department.
- If the hot water bottle is not enough, orgasm has effective analgesic effects. Masturbation can therefore be a tool to accompany the pain (no, really). Meditation can also help you hold on to the effects of pain. Under the present circumstances, it is not recommended that you use anti-inflammatory drugs.
B) PANIC ATTACKS
- As a PAS/I/MD, you are not unfamiliar with anxiety attacks. Multifactorial, they can occur at any time and are distinct from anxiety, which is more like a diffuse disorder that can become sickly. Anxiety attacks can manifest themselves in different ways: feeling of suffocation, dizziness, loss of control, nausea, a feeling that the body is slipping away from itself, a feeling of mental frenzy, sweating, hot flashes, and the desire to run away. The brain identifies an event, a person, an object or other as a potential danger: the anxiety attack is therefore the result of anticipation. I would like to emphasize this point. The brain fears something "to (possibly) come", which means that this thing... does not exist at the moment, and the chances of it existing are relatively low.
- The anxiety attack in PAS/I/MD can occur during emotional as well as sensory overload. Too many simultaneous stimuli cause the PSA to feel crushed, to feel like they are being held hostage, and to be cognitively confused; if they are already showing signs of fatigue, the anxiety attack or meltdown may be intense.
- Whatever the object of your anxiety attack, don't try to dissect it indefinitely. You may increase the anxiety. However, accept that you are going through something unpleasant and remember that it is temporary.
- Drink cold water, walk around your apartment. If you are surrounded, assess your need for assistance and the possibilities of being accompanied as suggested in the paragraph for the entourage and/or go to your safe place. You will gradually reconnect to more real sensations. Lying down during an anxiety attack can sometimes make you feel dizzy. If this is not the case, you can take the opportunity to raise your legs against a wall and start deep breathing exercises.
- If you can sit upright, put your hands on your thighs and inhale deeply, through your nose and quietly, for 4 to 5 seconds, concentrating only on the air passing through your nose. Breathe out for 4 to 5 seconds, repeat this cycle until the peak of the anxiety attack comes down. You can lengthen the time (6 seconds, 7 seconds, etc.) of inhalation. As you breathe in, your thoughts are likely to be confused. Images may come over you, so ignore them. When your anxiety seems lower, don't hesitate to summon your sensory sensitivity and to touch reassuring textures, to smell smells that soothe you. When you feel more connected to your environment, try to focus on a specific interest or activity that you enjoy.
- Sometimes a PAS/I/MD, despite the attempt to soothe, must soothe the anxiety attack with tears. If this happens to you, don't try to stop yourself from crying; on the other hand, when the meltdown seems less invasive, try to reconnect to the sensations by following the breathing exercise suggested.
-Understanding how the brain works during these seizures can be a good tool for distancing oneself. Anxiety attacks will be more present during periods of intense stress (unexpected, increased social immersion or cohabitation, uncertainty, disturbed sleep, etc.). Avoiding situations out of fear of an anxiety attack will encourage the onset of an anxiety attack. The issue is more complex in PAS/MD than in PMD: environmental planning will have to be seen as a factor to be taken into account in preventing anxiety attacks and accompanying them.
C) TRANSFORMING TOGETHER
We have seen that the current health crisis condemns us to isolation and uncertainty. Despite all the data and knowledge we have of the autism spectrum and the constants we have been able to identify so far, it seems to me cavalier to commit to a rigid prognosis on how PAS/I/MD will experience the period of confinement. Social science studies are currently investigating this issue. Some PAS/I/MD currently report no real differences from their lives prior to state-imposed measures, while others experience increased anxiety and more significant hypervigilance behaviours. Some PAS/I/MD do no tobserve major changes in their feelings about anxiety, but do reporta marked worsening of their EDs. Most raise the sensation of living"out of reality", while confessing to enjoying empty streets and constant silence.
To avoid overloads, favour reliable sources that you can consult daily. The more informed you are, the less anxiety there will be. On the other hand, choose sources that are solid, or at least as realistic as possible (links to reliable information on the situation are available in Resources).
Although human adaptive capacities are great, the frenetic nature of the situation does not allow for a measured experience. Therefore, an attitude of social cohesion and mutual aid is strongly called for, both in the material approach (exchange of knowledge and services) and in the sensitive approach (listening, support, implementation of common strategies). Monopolise your most successful or useful achievements, and choose a method of sharing with which you are particularly comfortable.
Are you a PAS at ease with statistics? Your synthesis skills are rather good, and you are used to making videos?You can help people better understand the numbers that are going around. You have good planning skills, you know how to develop mobile applications? Combine your wealth with someone else's! I would like to draw the attention of PAS/I/MD to the need to set up "virtuous circles" to help everyone's daily life, including yours. Don't you feel that you have academic knowledge that is useful enough to share? Perhaps it is your methodology for gathering information that would be a great link in the social chain, or your sense of detail.
D) TAKE CARE OF YOURSELF
The beginning of confinement marks a clear social emulation: while this may initially reassure at first on the ability to share information quickly and to trigger solidarity impulses, it also indicates an impulsive need to respond to the vivacity of emotions.
After the stunned reception of the hecatomb, everyone goes ahead with their theory, their accusations, their means of defence, which is not without consequences. PAS/I/MD are advised to adopt a strategic posture to preserve themselves:
- Consider that the social game you are witnessing (and perhaps taking part in) is the need to resolve an internal tension. Here it is the values of each individual that are exposed, and the general fear that speaks.This does not mean that all speeches are equal and that a relativistic point of view must be defended. On the other hand, taking a step back from the way people express themselves, believe, convey information, keeping in mind that the emotional clearly takes precedence over the rational (although this is not desired, this is how the brain works) can help you to preserve yourself.
- If conspiratorial discourse is flowing in your news feed and you want reliable scientific data to counterbalance it, create a status and point to those same sources. Be succinct in your presentation. Don't exhaust yourself by answering under every comment you see on the profile of contacts making speeches that bother you: no one likes to be criticized under their own roof. Don't try to get into a debate unless you know the person you are talking to very well and they are able to talk to you out of curiosity: keep in mind that people want to be right, no matter what they say.
- The physical distancing that confinement, the exceptional situation and social emulation will encourage written exchanges, the sharing of voice messages and personalized videos. If it is comforting for you to exchange with your peers, avoid overloading yourself here too: it comes very quickly! You have the right not to systematically reply to received messages.
- As much as possible, allow yourself moments of silence and comfort, even if they are short. If your specific interest of the moment brings you respite, don't feel guilty about spending hours without communicating. However, be careful not to get so absorbed that you forget your vital needs.
- Arrange your space to create a safe place that stands out from the rest of your apartment, if the surface area allows it, of course. Create a relaxing atmosphere before you go to sleep. If soothing rituals such as stretching, listening to ambient sounds, etc. have been proven effective for you, it is not advisable to change these habits.
- As far as possible, make sure you maintain a dietary and sanitary hygiene adapted to your needs in order to avoid gastrointestinal disturbances. It has been observed that PASs suffer more from digestive disorders.