Who is Aspy Girl?

My name is Rebekah and 3 years ago, at the age of 31, I was diagnosed with Autism Spectrum Disorder, also know as High Function Autism and previously (and my personal preference) known as Aspergers.

After 3 years, and with support and encouragement, I am finally fulfilling my desire to find a way to share of my experiences, in the hopes it may help other understand the realities of an adult, female with ASD.

These experiences are my own and, as Temple Grandin once said “My autism is not your autism”, so, while I will have similar experiences to others with ASD, I want to make it clear that all of us present in our own personal ways. We all have our own personalities, life experiences and management skills and this blog is about letting you into mine.

I will happily answer any questions people may choose to post in comments. I will, however, be maintaining as much anonymity as I can as my personal life and family are sacred.

When people care

Over the years I’ve had a multitude of medical procedures and operations for different medical issues. Usually they end with me feeling totally emotionally and mentally shut down and overwhelmed. The whole process ends up being confusing, scary, overwhelming and horrific and, no matter how simple the procedure, the whole scenario has always left me full of dread and anxiety.

Yesterday was the first proper procedure I’ve had to undergo since being diagnosed with ASD (Aspergers). This time, with my partner and my psychologist’s encouragement, I was able to inform the key people involved in my care about my ASD and it made a huge difference to my experience. The differences where seen in all areas, including how the procedure was done as well as the pre and post op care.

The procedure itself was a diagnostic lumbar puncture. For those who don’t know, this is where a doctor inserts a needle into the spine (between your 2 vertebrae) to either measure the pressure of your spinal fluid, retrieve spinal fluid for testing, or both. As the needle is being placed near the spinal cord the patient must stay perfectly still for safety and to ensure no complications. As previously mentioned, part of my aspy is that I stim a lot, especially when I am stressed, which made a straight for lumbar puncture dangerous. Having shared my diagnosis with the specialists, it was decided that the procedure would be done under twilight sedation which would ensure that I would be sedated enough so as not to stim. While this made the procedure far more significant, it also made it far safer all around. This was the first way in which my ASD was taken into account and my mental, physical and emotional safety was considered.

Once the mode of the procedure was set, it became day surgery which meant a far more involved pre-procedure situation. Given the current pandemic I had been warned that the hospital had been restricting patients having partners in the waiting room with them, let alone beyond that point, but, once we talked to the nurse, they allowed my partner to stay with me for as long as possible in the pre-op stage. Normally I am used to trying to manage and process pre-op alone and often end up agitated, emotional, overwhelmed and unable to take in information and therefore not really able to understand what’s going to happen during the coming procedure. Having my partner with me meant I stayed calm and I feel I was much more mentally prepared.

They only seperated my partner and I when it was time for me to we wheeled to the operating room. As soon as I arrived I was met by the anaesthetist who had been doing most of my pre-procedure work up so she was a familiar face. I was feeling ok at this point but, as soon as I walked into the room I began to panic a little as there were a lot of people and a lot of instructions happening at once. I tried to focus but quickly felt like I was drowning. As I lay on the table with them hooking me up to ecg leads (that they kept repositioning as they weren’t working), an oxygen mask, a red hair hat, the IV line as well as being told to move my hips and knees before being strapped to the bed, the anaesthetist noticed that I had started to shake, get overwhelmed and was close to crying. She realised I wasn’t managing and literally told everyone in the room to stop for a minute. She then lent in and very quietly spoke directly into my ear and explained everything that was happening and what they needed me to do. That moment of quiet and kindness was all I needed to be able to shift back into processing mode long enough to follow instructions and do what they needed. This was also the point where, although they weren’t quite ready to put me under, as they needed to do a pre-procedure CT scan, they very slowly started something through the drip to help calm me. In short, they not only made sure I understood what was happening, they also did their best to help me stay calm.

After the procedure, the same anaesthetist stayed by my bed in recovery until I was awake enough to understand what was happening before leaving me in a new place.

Once I was fully awake in recovery and the nurse who was caring for me had been able to talk with me about my ASD needs, she went through my bag and found the bear I had brought with me that is weighted. When placed on my chest, it is a small (and portable) version of a weighted blanket type scenario as well as being soft. It has a calming effect and, knowing that the nurse understood why I needed it, I did not feel at all self conscious about using this calming technique (where I would have in the past). She also immediately went and found a phone and called my partner for me so that I could talk to her. This not only reassured my partner that I was ok, but also allowed me the much needed soothing effect of talking to the person who makes me feel the calmest. This was especially important as I had to lay flat and not really move for the first 4 hours post procedure which felt scary and restrictive when I was first told.

After 1 & a 1/2 hours they sent me through to the second level of recovery and it was decided that they would let my partner come back and sit with before I was ready to be released so I didn’t have to do the full recovery alone. This made a huge difference to my ability to stay calm and not get overly emotional. The nurse in the second recovery level also shared with me that her son is also on the spectrum so she turned some of the unnecessary machines off around me so I didn’t have to deal with beeping sounds etc as well as moving curtains around for me to reduce as many potential stimulation issues that she could for me. It was incredibly helpful.

While I would much preferred to have not have had the procedure in the first place, the experience was actually pretty amazing in the end. I felt incredibly well looked after and feel that everyone I came across went to great lengths to make me feel safe, supported and to ensure I got through the experience as successfully as I possibly could,

Usually, after any kind of procedure/operation, I go into complete shutdown for a few days afterwards to mentally recover. Last night I was still exhausted and was asleep early as expected, but surprisingly today I don’t feel like I’ve been shut down at all. In fact, mentally, I am feeling fully functional and ok today which is a huge change to normal. I am so grateful I chose to share my ASD and allowed myself the support on offer, it has changed my experience forever.

August 14, 2020 1

Finding a way

The last few weeks have been long and emotional. My partners grandfather passed away and, while it was expected, it was still painful and felt deeply by the family.

We spent time in the weeks between the death and the funeral not only in mourning but also being with her family helping out both practically and emotionally as best we could. It was a great honour and privilege to be able to be there for my partner and her family but, it also meant less time for me to take the time I normally do to do the self care I normally need.

I have learned I can manage this in short bursts. I can hold myself together but it means that I need to allow myself more coping strategies during these times to manage the moments of overwhelm that are not only inevitable but also more frequent.

The funeral itself was a wonderful way to honour a mans life but, given the restrictions still in place given COVID-19 it meant my partner and I (and all other attendees) had to sit 1.5 meters apart. This, for someone who uses holding hands as part of my grounding techniques when I anxious, meant I needed to find other inconspicuous ways to help myself manage that situation. I wear a ring on my ring fingers on both my hands to fiddle with all the time so I have them to fiddle with when I need something to help myself but, given the weight of the finer and that we knew of these restrictions, my psychologist had encouraged me to take something small to hold that I could fiddle with that had the same grounding effect. I chose a small toy hedgehog that holds sentimental significance to me and fits perfectly in my hands. No one but my partner knew I had it or would have seen it.

Aside from this very specific coping strategy at the funeral, I used what I refer to as “suiting up” as a way of getting myself into the right headspace for the role I wanted to fulfil as the support for my partner in the situation. It is somewhat what it sounds like. In the case of this funeral it meant making sure that I was dressed, from my shoes, right down to the hair tie I have on my wrist for emergencies (and all the clothing in-between) were neat, clean, respectful and suited the situation. Knowing that I am wearing the right things lowers my stress and anxiety so I can redirect my focus to supporting my partner. I also wear makeup to events like weddings and funerals, something I do not do in every day life. For me it’s akin to putting on a mask, not to hide who I really am, but to help me feel stronger and like I am literally able to put on a brave face when walking into situations with strangers and significant amounts of people. Whenever I suit up though, I make sure I do one thing that maintains who I am and it’s usually my socks. For this event I wore R2-D2 socks that no one else could see but I knew were there the entire time.

With these strategies in play, the funeral and internment passed with minimal anxiety for me and I felt I was able to offer all of the support my partner needed and was fully present for her in the moment. I was also able to take some time to engage with my own grief and experience the day for myself as well.

The small wake afterwards was another potentially overwhelming experience as I was being introduced to family members that I’d never met before. As happens often, extended families of this size, congregate for weddings, funerals and baptisms and so not only had in or met them before, it had also been years since my partner had seen most of them too. My partner and I talked about how we would support me through the wake and how we could help me do what I needed to do while allowing her to be free to do what she needed to do for her family too and we decided on the following.

1. We took 2 cars to the wake – this was done so that, if I needed to leave before the wake was over (and before she was ready to leave) I could do that and she could stay as long as she needed/wanted to.

2. I took a change of jacket with me – this meant that I could get into something slightly more comfortable (and warm) for me.

3. She would not disappear on me – this doesn’t mean she couldn’t go off and chat to people without me (or me without her), just that we would check in with each other before we walked outside/off to chat with someone.

4. I wouldn’t push myself too far – this is a weird one. I have a habit of sometimes staying in a situation too long and pushing myself to a point where I get overwhelmed. This can end up being stressful to my partner which isn’t helpful (for either of us) and would have been especially unhelpful while she needed to be able to focus on her family. She loves me and cares about me and wants to look after me so we agreed on a way to do that beforehand this time, instead of trying to do it in the moment.

I did end up leaving the wake early and everyone in the immediate family (who know me and know about my aspy) completely understood. I am really blessed that my partners family has accepted that I am a little different. I do my best to always show up for my partner and whoever is important to her, I just sometimes can’t show up for as long as some people may be used to and I think that they have decided that that is enough (and I am so grateful for that)!

All in all my partner felt supported, I felt I like I had been present and participated and I didn’t feel completely drained by the end of the day. I had been able to connect with the people around me and, through using a myriad of coping skills, gotten through without feeling overwhelmed or overly anxious. Not all big days go so well, but I am thankful that this one did.

June 21, 2020 0

Charlie

I have mentioned my dog in a few posts, so this one is dedicated solely to her!

Charlie is an 8.5 year old Lab x Staffy mix. I got her at 10(ish) weeks old and she was the picture of a lab puppy.

Charlie on her first day home with me.
November 2011

As she’s grown, she’s continued to look like a Labrador but has stayed the size of a slightly tall English Staffordshire terroir.

When I first got her my aspy was years from being diagnosed, but my depression was well known and in full swing. My life was empty and I was living alone for the first time in years, I was also dealing with some health issues that made life even more lonely. I spent a lot of my life in bed, unable to function or do anything much. Getting Charlie changed ALL of that! Having a living creature that was fully reliant on me got me out of bed every day. I had to feed her, take her out, exercise her and make sure she was mentally stimulated and learning.

Her first thunderstorm. We went outside and played so she learned not to be scared of thunder.

Eventually, with training, she was allowed to come with me when I went to uni etc and she helped with my social anxiety. She also pushed me to interact with other people, something I find very difficult, as my ultra-cute dog was an obsessive topic most people enjoyed hearing about…and Charlie soaked up all the attention and pats.

She has been the constant in my life for almost 9 years now and I can’t imagine having survived a lot of the trauma I’ve endured the last few years as well as I have, without her. She lays her head on my knee when I cry, sits quietly with me when I can’t do anything and makes me laugh when I’m stuck in a bad moment. She’s my goofball and I love her for it.

She is also a companion that will literally follow me anywhere and do anything I ask of her, even when she’s scared. She trusts me more than she’s scared of things, and that is a huge privilege and honour. This became even more clear when I started walking for both my mental and physical health. At one point we were waking 10kms a day, and she just kept walking as long as I did. She’d slow down, but never ever stop.

Rain, hail or shine we’d walk, every day. She loved exploring new spaces and meeting new people and animals. She swam whenever I’d let her and puts up with posing for a million photos both on her own and with me. I would not have gotten as fit or healthy without her. Even when I put shoes on her (so her feet don’t burn in summer and don’t hurt if we do too “off road”). For a dog who doesn’t love heights, she would follow me up on anything I climbed, trusting I always had her and she was safe.

She’s starting to slow down now days and going more and more grey in the face. That being said, she’s just as aware and follows both my partner and I around to check that we’re ok…or have food (her first true love). She loves a sneaky snooze in front of a fire and will lay there until she overheats.

Her favourite place though is still with her head in a lap, or curled in my arms.

I would not be here without this incredibly smart (although sometimes very much a derp) pup who thinks I’m amazing, even in moments I am proving that I’m not.

I have owned dogs before, and while I loved them both deeply, Charlie is a whole other entity. She has taught me so much (how to take joy in the simple things, how to enjoy our walks, how to look at life differently, how to judge a good person), helped me achieve so much (helping with my anxiety so I can go out into the world and function better) and is the biggest part of creating a life I actually get to live and enjoy. When the bottom fell out of my world, twice in 1 year I had to move twice in 9 months, I realised that, as long as I had her, I could create a home anywhere).

She “loves” me and she “loves” my partner and she has taught me to trust her judgement just as she trusts mine.

Impatiently watching the door because she knows it’s lunchtime and her “favourite human” (my partner) will come in soon.

May 26, 2020 3

Stimming – why is it important?

One thing that ALL people with Aspergers/ASD have in common is something called stimming. These are usually physical responses to strong emotions. These can happen when I am excited, happy and content as well as when I feel overwhelmed, scared, confused, angry, hurt and anxious.

https://www.healthline.com/health/autism/stimming describes stimming in the following way.

“The word “stimming” refers to self-stimulating behaviors, usually involving repetitive movements or sounds.

Everybody stims in some way. It’s not always clear to others.

Stimming is part of the diagnostic criteria for autism. That’s not because stimming is always related to autism. It’s because stimming in people with autism can get out of control and cause problems.

Continue reading to learn more about stimming, when it requires management, and where to get help.powered by Rubicon Project “

Now, I am a firm believer in stimming. It is reasonably involuntary but is definitely a great help to me when I am managing an overwhelming emotion. When I am in public, my stims can be a key part of me calming myself down. It gives me an outlet when I may not be able to verbalise how I am feeling (either due to the situation/company or because I do not have the words to express my feelings).

So, what are my happy stims? Firstly, I have a tendency to repeatedly tap my partners leg/arm if she is with my and something happens that I am excited about. If I am on my own, depending on the level of the emotion, I will jump and dance around (for example, when I found out my nephews and niece were born, I bounced around for a good 5 minutes with absolute joy). When I am anticipating something good, I will rub my hands together for a few seconds. I’ve done it for as long as I remember, and I think it was the first “stim” anyone else verbally picked up on, long before we knew I was aspy.

When I am trying to deal with something negative, my stims are very different. In the beginning of the negative situation, I will start playing with the two rings I wear constantly (one on each ring finger). If I am unable to resolve the situation/emotion I move to rubbing my hands together with my grip getting progressively tighter. I will also move to rubbing the tops of my thighs. If I continue to escalate in the situation, I will move to holding my hands behind my head and squeezing my head between my forearms – pressure around my head is a major calming sensation for me.

Now, none of those negative stims are an issue if they help me get on top of the situation reasonably quickly. They can quickly escalate to accidentally self-harming when I hit the edge of my internal management and the emotion overwhelms me. I will start to rock back and forth in my chair, or walk around the room. My hand wringing will get stronger and often I will manipulate my fingers in ways that can end up hurting. The head squeezing can turn into squeezing too hard and/or hitting my forehead. When I get to this point, I am no longer in control of what I am doing and outside intervention is incredibly important. When my partner or closest friends are around, they can just grab me in a bear hug. They hold me as tight as they can which not only stops the harmful stims, it also has a calming effect on me. If I am on my own, I can call a few people who can help talk me through things to try to distract myself/keep my hands and body busy.

If I call my partner/best mate/close friends when I am at that point of overwhelmed we have worked out that the following things help me to self calm (with them talking me through when I can’t think for myself): Playing my guitar, playing my guitar and singing, playing my trumpet, talking about my nephews and niece and either taking photos or editing photos on the computer. These are all things that not only take focus and give my hands something to do, they are also things I am passionate about and make me feel the happiest in every day life.

Now, given the fact that some stims can become dangerous, it is no surprise to me that a lot of neurotyplical people believe that they are bad and that they need to help stop me (or other ASD people) from stimming. It doesn’t look normal, it can make other people uncomfortable and its very clear that most people, unless they really love you for all of who you are, would prefer if I didn’t stim or stimmed less obviously when I am with them.

My response to this is simple and straight forward. Unless I am a danger to myself, another person or animal, let me stim!

Why is it so important that I am ‘allowed’ to continue to stim? As stated at the beginning, stimming is how I manage overwhelming emotions. If I cannot use the coping strategies I have (stimming) I will be unable to continue to function as I do now. I will stop going out in public as I do not want to be in a position I may feel overwhelmed without the ability to manage them. I will have top remove myself from my relationship because, loving someone and living with someone has significant highly emotional moments that I need to be able to process and manage. I would not be able to go out with close friends, my partner or family, because stimming is sometimes the non-verbal way I can give people a cue that I am not ok/something is not sitting well with me. The obvious caveat is that, if my stims become harmful, absolutely stop me, but that rule is usually reserved for those closest to me who I trust. They are able to help me calm myself without the stims, something I can’t always do for myself.

I am “lucky” in the fact that my stims are not too out there or obvious and are things I can do quietly without effecting others. Some people with ASD have more overt stims like dancing with happiness, flapping their arms or having a full meltdown. These stims should be as equally accepted and supported as my quieter ones. Instead of passing judgement and either trying to stop the situation or calling the person “crazy or weird”, maybe take in that this person is so overwhelmingly happy that they just had to dance. Or, if someone is having a meltdown, try and understand that they are not attention seeking, spoilt or nuts, they are overwhelmed and trying their hardest to manage that. Everyone, ASD and neurotypical, can hit that point of overwhelm that you just want to cry or scream, or throw something, people with ASD are simply more likely to actually do those things than the neurotyplical ones.

Be kind, try and respect how hard I am working to manage when I am stimming and give me the space to find a way to function in those moments.

May 20, 2020 0

Tired and Broken

I have had a migraine/super bad headache for 3 weeks as of tomorrow. I have been to doctors, gone through tests and am in the midst of trying to find the right medications to solve the issue. Thankfully, at this juncture, the tests have all come back with nothing serious/anything of note (beyond the fact that I do have a brain), but that is actually both good and bad. It’s obviously good because it would seem that, whatever is going on, it is not life threatening. But bad in the fact that we still have no real idea why this is happening.

I have been a migraine sufferer since I was 9. I distinctly remember the first one and the fact that I was told that it was likely stress related. Had we known about my aspy back then, we would have likely all worked out ways for me to reduce myself, instead of me continuing to keep up the facade that I was “like everyone else”.

This is one of the few times I truly wish that I had known about who I was in my childhood. It would have helped me immensely to know that I WAS different, but that difference can and would be ok because, once you understand what the “problem” is, you can better work with those issues to learn how to manage it in every day life.

I have continued to suffer from migraines ever since. These can be reasonable mild (I get the eye ora, a little bit of tingling in my face and then nausea and mild head pain) to full on “knock you down and drag you out” migraines (significant ora, tingling and numbness moving through half of my body, major nausea nearly always ending up in throwing up, major pain behind one of my eyes and a complete aversion to light). The mild ones I can usually function through on some level, the major ones require sleep to get them to reduce, even a little. I also, on occasion, get a cluster migraine that can last 2-3 days. All of that being said, 3 whole weeks with minimal relief is INSANE!

Now, this IS still a blog about my journey with my aspy, so I am going to move to talk about how the migraine is effecting my ability to manage my aspy. Firstly, there’s just the normal mental wear you get from feeling unwell. The longer it goes on, the more you can feel flat and unable to function mentally. Add into that the major guilt I feel when I know I am not able to complete some of the things in life that I generally need to. Some days, getting off the couch for any reason seems pointless and like a physical impossibility. So I have had to prioritise. If I’m having a really effected day, I prioritise cooking, as getting a good meal in helps the manage everything else. If I am having a better day, I will add in things like throwing a ball for the dog, doing a quick sweep of the kitchen and lounge with the vacuum etc. Thankfully, on the days that I have also had to add in seeing my GP or doing a test, my partner has taken over making sure we eat dinner. It is immensely appreciated on those days.

On top of the mental and functional difficulties that this migraine has caused, I have also had to open myself to letting absolute strangers into my house (locums/home visit doctors). I’ve had to not only let them into my home, my safe space, but also let them touch me (to check pulse, blood pressure, temperature and then to give me an injection). The first time, I was home alone and so I needed to work through all of my anxieties in the time before he arrived. The second time my partner was home. I still needed to work my way through anxieties, but I also knew that I had backup and I wasn’t alone. I knew that uncomfortable touch from a stranger could be followed by a safe hug from one of my most safe people.

We’re at a point now that I may need to front up to a hospital Emergency Department so they can give me intravenous medication. Given the risks of COVID-19 and the fact that some hospitals are not allowing partners/friends to go in with their person and adding in the already high amounts of anxiety I feel when going into hospital, I am avoiding that as long as possible. That being said, I am getting to the point where I will have to go, especially if its the thing that will fix it.

I have every day ups and downs with my aspy all the time. I have good days and bad days. I have days where 90% of my slimming is happy, excited or content, but then I have other days when that 90% is due to anxiety, fear, confusion and discomfort. I can work through all of that most of the time, managing both my stims and working out how to help myself in a “negative-emotion” moment. When I add in being sick or in pain, my focus becomes somewhat consumed by managing my feelings about how I am doing physically. In the end, I just feel overwhelmingly tired and broken, even though I know that this is going to end, I am going to be ok and I am not actually fully broken, just a little off.

I am going to end by saying that I would not be as “ok” as I am without the support of people around me, and most of all my partner. When I need a break she gives it to me, if I need to spend the day in bed, she’ll check in on me on her work breaks and spend her free time sitting next to me in bed so we still get to be together. I am also grateful to family who have stepped back from regular contact to allow me time to rest and heal. I am also grateful to the medical support I am getting and for living in a country where the locum visits, gp visits, CT scan and any ED visit are covered by our public health system and I have not had to pay for anything more than medications.

May 20, 2020 0

When you’re out of control

There are many things in life that I cannot control but usually I can use a lot of my strategies and tools to help me manage those situations. Sometimes though, like now, that no tools and no strategies can help.

I have been dealing with having, at best a bad headache and, at worst, a full on migraine for 11 days. It is so bad that nights, like tonight, I’m still awake at nearly 3am because the pain is stopping me from sleeping. I have taken all the painkillers I am able to and, have reached out to a house call doctor twice to help. Im resting most of the time and making sure that Im eating foods that are filling but do not trigger headaches. Nothing is making it go away and just that fact alone is becoming overwhelming.

For most people, being in pain for an extended period of time, can be draining both mentally and emotionally. Again, for a lot of people, that pain being located in your head can effect your ability to think, process and manage the basics of life. For me, when a lot of life can feel unmanageable already, adding in the pain basically trashes everything.

It’s caused me to walk out of a family gathering (and not being able to say goodbye to anyone but my partner), cancel on another family catchup, rearrange appointments and not be able to spend any time doing my current small typing job for a friend. I have managed to set up a create dinner most nights, but they have been reduced to anything that can be made in my pressure cooker, a plethora of “one-pot-wonders” which are starting to get a bit boring. Beyond that, I do very little and still feel constantly exhausted. All I want to do is cry, but that makes my head hurt more, and I know my patience is all but gone, even for things that normally I find amusing and/or endearing.

I’m also more clingy because I feel awful. All I want to do is hug and curl up into my partner so that I feel safer and grounded, but this is something that just isn’t possible all of the time.

These are the times when I need to be kind to myself. I need to accept that, for right now, it’s ok to feel overwhelmed, its ok to collapse under the weight of the pain and its ok to lean on other people more. So, how do I do that? I stay in bed if I need to and, when my partner is not available, I use my weighted bears and weighted blanket to give me the calming effect I’m chasing. It means that I need to be honest with other people about my current abilities/inabilities and trust that they will be able to accept and understand those things. I also need to be especially honest with my partner about my level of patience so that, if I snap, she understands that I genuinely don’t mean it personally and to take it with a grain of salt, given my pain levels and feelings of being overwhelmed.

May 11, 2020 0

Time to go

Yesterday, after hours of conversation and consideration, it was time to make a decision. We held out as long as possible, but now it’s time to pack up my life and ship me off to “the middle of nowhere” to try and keep me safe.

The COVID-19 pandemic is causing a change to how we, as individuals, couples, families, friends and coworkers, live our lives. With stricter guidelines being imposed by governments, we are now told to stay at home and go out only for essentials.

Some people however, have to live a life not only separated from the world, but also from those we love. Those of us with extreme health concerns and considerations are being urged to eat alone, sleep alone and restrict ourselves to one room most of the time. Some people are doing this within their shared homes and, others like me, are having to leave in entirety.

This is all scary and feels very broken. I had a bit of a cry last night as we realised that we have no idea how long this will have to be for. I could be gone for 6 weeks or 6 months (hopefully not) for all we know. And as an aspy, who doesn’t manage well without set parameters, it’s horrible. I’m struggling to sleep, and even when I sleep, I’m having nightmares as my brain tries to process the stress.

While the virus itself is scary, it is not the thing that is causing me the most stress. The thing that I am struggling with the most is knowing I’m going to miss my partner, and while we will talk to each other as much as possible, there’s nothing we can do or fully plan to bridge that gap.

On top of this, we’ve also had to discuss and accept the fact that, if either of us get sick, we cannot be there for each other and that is going to be terrifying. Neither of us will have to go through it alone (as we’ll have our respective families) but it’s not the same. When we moved in together, we gave each other the power and responsibility of making medical decisions for each other (if we can’t make them for ourselves). Being separated means, while our respective families will do their best to make sure we maintain the ability to make those medical decisions, it also means that, any decisions that need an immediate answer (that cannot wait for our parents to contact that other person) will have to be made and then relayed.

Being together, supporting each other, spending our evenings together…these are all things we’ve taken for granted since moving in 3 months ago. We were prepared for minor separations, when I needed to head off for a week or so to visit family, but that was always going to be planned and managed. Times that would be agreed upon and with a set beginning and end. This we had never prepared for. Aside from military couples/families (who have to face the reality of someone being sent somewhere with no set time frame etc), I don’t think anyone really ever does.

We are dragging ourselves into the unknown, a painful and separated unknown. We just keep reminding ourselves (me especially) that, a (relatively in the grand scheme of things) short physical separation for my safety, will hopefully give us the extended life together we want.

March 25, 2020 0

Stress endurance (COVID-19)

The world is in crisis with self-isolation becoming more prevalent and more major cities, and even countries, going into complete lockdown. The scariest part of all of this, from a general standpoint, is that this is a worldwide pandemic, something that attacks people’s health and can take lives. People are scared and acting out because of it. The changes in health safety, access to friends and family, food and “freedom” are heightening most peoples anxieties and testing self management skills.

But what happens when even simple changes make you unsettled? What happens when your already heightened anxiety is stretched and pulled further than it’s limits? What happens when your brain processes life differently and and it just can’t cope? What happens when you have ASD and the world around you is in crisis?

As always, I can’t speak for everyone with ASD but I can speak for me.

Simply put, my emotions are out of control and I am struggling to self regulate any and all of my emotions. More frustrating though is that fact that I’m struggling to identify not only what emotion I’m feeling, but why. This has led to me feeling frustrated and hurt by one thing (things that shouldn’t have that effect) and not realising, until I’m an absolute mess, that it was about something completely different.

Tonight, I thought I was hurt by one thing, but after ending up crying uncontrollably, I suddenly realised that the emotion wasn’t hurt, it was fear and I wasn’t afraid of anything someone was doing, but by things that potentially need to happen in the coming weeks. I am immunocompromised and so at higher risk of major complications if I contract COVID-19. I have the opportunity to leave the city I live in and go and stay at my parents reasonably isolated home in the country. This seems like a good idea but it would mean leaving my partner at home, 4 hours from me. My fears range from us getting sick and being separated, to the city being put on lockdown and me not being able to come home for an unknown period of time. I’m not scared that the time apart would damage our relationship in any way, but simply that we will miss each other and our ability to physically be there for each other may be taken out of our hands.

Aside from that, change is proving a real issue for me. In the space of less than a week, I have gone from being home alone from 7:30am – 5pm to my partner working from home. This is NOT a bad change and it hasn’t actually been that disruptive for me, but, my aspy doesn’t differentiate between “good” and “bad” change, it just sees change as stressful, scary and hard to process. The whole situation also evolved faster than we’d originally thought so time we expected us to have to process simply wasn’t available. Starting to understand this will help me to better manage these changes and the unexpected physical and mental toll it’s taken.

Between managing fear and change, my anxiety levels are off the charts but then I need to add in the anxiety that comes from not knowing if we have enough food to feed the two of us in our house. Having to go to the shops (which can be a horrific experience on the best of days) nearly every day to find the basics (rice, pasta, milk etc) is both exhausting and mentally painful. i am not the only person with these fears and having to put themselves through the shopping, and there is solidarity in that, but some days it feels so heavy I think it will crush me.

Possibly the biggest change and difficulty for me is the change in support systems. Everyone is stressed. The people who usually help me manage and self regulate are stressed, anxious, worried and exhausted by all of those things. Their lives are a jumbled mess too so the support dynamic has to change. I am struggling the most with the fact that, in a time where some people need my support the most, I feel that I’m loosing the plot and adding to their stress.

I know that this will all settle into a new kind of normal, and by the time the crisis is over, I will have settled into managing life as it is. I don’t believe it will feel this overwhelming and broken forever, but I do know that managing this crisis is going to be more of an endurance event than a sprint.

March 19, 2020 0

Fighting in the dark

I have been married twice, and sadly both of my marriages have ended. While my aspy was not the reason for the end of either of these relationships, it had a significant effect on both of them during the relationship.

The sad reality is, throughout both relationships, my spouse(s) and I were in the dark about my ASD. During my first marriage we had no idea I was on the spectrum and we were dealing with the classic misdiagnosis that often precedes an ASD diagnosis in women. Years later, when I was diagnosed, all the pieces slotted into place and we both understood some of what happened for us.

I got my ASD diagnosis a year into my second marriage but, by then, other issues had taken their toll. We were at a point at learning how to manage and work with the new diagnosis was just to hard and we were beyond that.

I spent a lot of both of my marriages feeling overwhelmed and overloaded. As with every relationship, there were basic issues to deal with that come with living with someone for the first time and while I was able to confront the issues that were happening, I did not do well with managing the other persons responses to them.

I fix things, it’s what I do. I work hard to try and find solutions to issues and to get through them and beyond them. I read a lot, think a lot, talk it through a lot and try and find a solution instead of letting it just sit there. Other people don’t always work like that. And when they needed time to sit with in issue, I felt confused and anxious and scared and couldn’t sit with any of those feelings so I would push and push and push to fix things.

I also struggled with, what felt like, uncontrollable anger when I became overwhelmed with hurt, frustration or any other negative emotion. I yelled, I was aweful and would say things just to try and make them feel any of what was feeling.

I knew I could NOT continue with that level of anger. Even before I got my diagnosis, I had worked (and continue to work) really hard to find ways to manage and control my anger. The diagnosis simply made the reason for my anger clearer, it didn’t change my need or desire to change what I was doing and how I could hurt people. I wanted to make sure that, in any future relationship I was in would NOT involve my explosive anger and that I would have better management skills to ensure that. I also understood that I would never be able to avoid conflicts and fights in a future relationship, because they’re part of a healthy relationship.

It was not easy. I failed terribly at times to keep it together. In the beginning, I had to accept that it wouldn’t just go away and, as long as I progressively learned to not “jump” and get upset, I would see changes, but, for a while, I’d really need to look hard for those small changes.

To be clear, me not outwardly getting too angry is not the same as me not feeling that anger. I still get to the point where my blood feels like it’s boiling, my skin rushes with heat and my brain and mouth are chomping at the bit to say whatever come back I have. But when I’m at that point, where my body and mind are gearing up to explode, I have learnt to look at the person I’m angry at and focusing on how I normally feel about them. Do I love them? If I love them, is what I’m about to say going to unnecessarily hurt them? Is what I’m about to stay going to help in this argument? Usually this helps my perspective and, sometimes through gritted teeth, either say nothing, or find something that is helpful to moving forward in the issue.

I’ve also learnt to take a time out. I’ve learned that, if I walk out for a few mins, I can talk myself through things and come back to the person calmer. The key though, is that I MUST come back and that the person needs to know I am coming back, I want to come back and I still want to deal with the issue and get through the fight.

While I wish I’d had an earlier diagnosis, and while I believe it would have helped in both of my marriages & made them more enjoyable, I have accepted that all I can do is understand myself more in a future relationship.

From other aspys I’ve talked to, I am not alone in how I feel when I realise I’ve hurt someone. The guilt and pain rips through my and I end up replaying what happened over and over again in my head. This means that, when I realised how much hurt I was causing with my anger, dealing with it and never having to feel to horrible because I hurt someone, became my need and goal. Things do change, I can change and manage my emotions and actions to some degree.

March 8, 2020 0

Eating out

We have found, that when I’m faced with going out, whether it be to a restaurant or someone else’s house, it is really helpful for me to know what I might order/what’s being served.

I don’t often go to a restaurant to eat so, when I do, I tend to go to one of the 5 same places. Why? Because I like those places, feel comfortable mentally in those places and know that there’s at least 1 thing on the menu that I will enjoy eating. They’re also places where the menu is simple enough and easy for me to find an alternative meal if I want it. I used to try and force myself to try new things, but I’ve learnt that, it’s ok for me to eat the same things because I know they bring me joy.

Even if I am heading to a new restarting, having a look at the menu ahead of time (thankfully most places now post their menus online). I’ll sit down beforehand and read it, so, by the time I get to the restaurant, I’ve already decided what I’ll order. This takes away the stress of being put “on the spot” and being scared that I’ll muck it up.

On top of getting the same thing all the time, or pre-reading the menu, 99 time out of 100 I’ll pick a restaurants version of one of the meals I know I generally love and find easy to eat. For me, the 4 basic meal choices are… 1. Ribs 2. Sticky pork and rice 3. spaghetti carbonara 4. Rare steak.

Now, I’m really lucky to have family and friends that consider my food needs when they invite me over. They’ll either check in about a certain meal, or they stick to foods they know I eat. There is only one thing more helpful and respectful than the simple question “hey, how do you feel about pasta bake, will that set of any issues for you?” and that is, someone accepting and being willing to change their planned food for something we can all enjoy.

Sometimes, me getting say in food, isn’t an option. In those circumstances I will ask for a smaller portion of the meal (and I don’t eat big serves normally) and then eat what I’m served without complaint. Yes, it’s hard, and sometimes I just have to focus on chewing and swallowing, and not paying attention to the flavours and textures. Being aspy doesn’t mean I don’t understand that the politest and kindest thing to do is honour and respect the person who cooked and the food serving you.

My aspy effects my processing in lots of ways and while it seems a lot to think so much around food, I’ve learned that it’s important for me to find ways to make my experiences calmer and more enjoyable for everyone. It’s ok that I do this differently to “neurotypicals,” at least I’m still putting myself out there and doing things.

March 8, 2020 0