There is a saying that Autism and Anxiety go hand in hand; but not all autistic people experience Anxiety, not as a condition at least.
The reason for the saying is that a high number of autistic people experience anxiety, depression and suicidal thoughts. Autistic people are at a greater risk of developing a mental health condition than the general population. Trying to live in a world that wasn’t designed for them has a big part to play in that, but, they are also at a geater risk of being abused and bullied to.
With that in mind, you would think that there would be more treatments and therapies designed for autistic people. The sad thing is, once an autistic diagnosis is recieved by an adult here in the UK, they are often denied support from mental health services due to the lack of therapists who are trained in therapies to treat people with Autism.
In the autism Facebook support groups I am a member of, there has not been a week gone by where therapy, or the lack of it, isn’t a hot topic. Too many people are being denied access to it because they are on the Autistic Spectrum.
Emotions
Autistic people experience strong emotions.
We either feel very little or we feel emotions intensely, there is no middle ground, both the positive emotions and the negative ones. Which is why we can quickly become overwhelmed by them and may even avoid situations to prevent feeling them.
Anxiety
A lot of autistic people experience high levels of anxiety and there are many different reasons for it.
Social anxiety can be a big part of that, due to trying to fit in and be seen as normal, as well as experiencing bullying and abuse due to our differences and nievety.
Spending your life feeling different to everyone else, and trying to hide those differences so that you fit in with your peers so that you can make connections with people, does have a big impact. Believing you are a broken human being. It often leaves you feeling judged by others, rightly or wrongly, because other people do notice those differences. Kids notice those differences and will point them out to you.
Sensory Sensitivity can also be to blame for the anxiety we experience; autistic people have heightened senses and can be very sensitive to noise, smell, touch, heat, pain and emotional noise. It wasn’t until recently that I realised how much of a trigger sensory sensitivity was for my anxiety.
Some autistic people have an incredible imagination; we can think of every possible outcome for an event or situation in the drop of a hat, the thing is, we tend to focus on the worst case scenario – which causes us to decline or cancel.
Some of us are highly sensitive to pain, which can cause a great deal of health anxiety.
When coping with anxiety it is important to work out what your triggers are.
Depression
Autistic people may experience episodes of depression, often brought on from Autistic Burnout and frequent episodes of Social Hangover.
We are more likely to experience episodes of depression when we have a lack of coping strategies to deal with living with autism.
Self-care is important, as important as recovery time after a social event such as meetings, appointments, parties, phone calls, and meet ups with friends etc. Recovery time to enable recharging of the social battery. Without it we often become overwhelmed and experience Burnout.
PTSD
PTSD can be as a result of trying to navigate a world that isn’t designed for you, the rush, rush, rush, the brightly lit and noisey environment that you find yourself in. Through struggling and coping with day to day life.
It can also be a result from bullying, being different from your peers makes you a beacon for bullying.
It can also be from trauma; a high proportion of autistic people experience abuse, all types of abuse. We are often nieve, easily led and highly trusting, we say things as they are and expect others to do the same and be truthful to us. Our difficulties and lack of social skills can make us easy prey for pedophiles and violent individuals.
Suicide
Current statistics show that there are more people on the Autism Spectrum who experience suicidal thoughts and commit suicide than in the general population.
personally, I am intrigued to know how much of that statistic is due to:
Late diagnosis
Lack of Mental Health Services
Lack of Autism Services
Abuse
Bullying
Lack of awareness for autistic people.
Trauma
How many of the people who commit suicide each year have undiagnosed autism?
One day it would be great to see a treatment that is specifically tailored for autistic people, that takes in to account why we experience mental health conditions the way we do, the causes and the triggers. A mental health service that accommodates for neurodiverse people would also be helpful.
There is definitely a difference in opinion with regards to seeking a diagnosis for children, whether that is in ADHD or Autism, some parents are scared of giving their child a label.
As someone who didn’t know they were autistic until the age of 40, I see diagnosis as a gift. I am on the waiting list for an assessment, but I know that I am autistic, and knowing that it has finally allowed me to understand myself better and to make allowances. Finally, I feel as though I have been handed the key to my life.
Sounds a little dramatic, perhaps. But, I have spent the majority of my life feeling like I was different, feeling as though I was a broken human being. I struggled with things that my peers seemed to grasp quickly, I didn’t know how to communicate very well, I didn’t belong anywhere.
It isn’t a label, it’s a diagnosis, an explanation for behaviours, difficulties and traits. It’s the gift of understanding myself better and acceptance, surely that would be something you would want for your child, I know it’s what I want for mine.
Knowing I am autistic has allowed me to recognise:
That I am not a broken human being, I am a perfectly normal autistic person, I just think differently to the norm and notice things that others do not.
That I experience intense emotions that I struggle to manage at times, but it also makes me empathic, I feel the emotions of others, I physically feel their pain and anguish but it allows me to support them when needed and I understand what they are experiencing.
That I may misread social cues and communicate in a different way, but thats not nessecarily a bad thing. Knowing that I am likely to misread things as given me the courage to ask when I am unsure, it has given me the opportunity to treat myself with kindness, instead vof beating myself up over it.
That I actually like people, and I like making connections, I just find I burnout easily and have to make allowances for it by including recovery days.
Friendships are importanct to me, the friends I do have are amasing and accept me foe who I am, they have stuck with me through think or thin. It has also allowed met to reach out ot other autistic people and build friendships with people who get it, and who I have no difficulty in communicating with.
That Sensory Sensitivity is a huge trigger for my anxiety, knowing that has allowed me make coping stratagies, and explains some of the anxiety I experience.
That I am the best person for supporting my child and it has shown me how to do so through learning about myself. I will fight tooth and nail for their support and wellbeing.
That it has given me the strength to ask for changes of adjustments if I am struggling, I missed out on support as a child and leearning how to live with autism.
For me, an Autism diagnosis is not a label, it’s a gift of life, and the start of a new journey
Rejection Sensitive Dysphoria is a term I came across in a Facebook support group for Autism; it is not considered as a disorder or a condition, but it is very much a symptom for the neurodiverse community.
Although I had no idea what it was, after a bit of research I have found that I can relate to RSD. In the past I have felt guilty and would beat myself up over the way I feel, but now I am starting to understand it more.
What is Rejection Sensitive Dysphoria
RSD is the extreme emotional sensitivity and reaction to the pain felt from the perceived or actual rejection/criticism from the important people in their life. It can also stem from a personal sense of failure, being unable to reach their own expectations and the very high standards they set themselves.
What causes Rejection Sensitive Dysphoria
There are several different reasons which can cause RSD, being neurodiverse and the effort it takes from trying to fit in and be like everyone else, is one.
Trauma – experiencing trauma as a child can cause RSD, being told that you are an unlikeable person, that you are not good enough and are being punished for naughty behaviour.
Mental Health– Mental Health Problems, and low confidence and self-esteem, can increase the possibility of developing RSD. Social Anxiety and RSD are similar in many ways, and it can be difficult to tell the difference between the two.
Autism/ADHD/Dyslexia/Dyspraxia – Feeling different from other people and trying so hard to fit in with peers, can leave you feeling not good enough for them and encourages people-pleasing behaviours.
Symptoms of Rejection Sensitive Dysphoria
Avoidance and the withdrawal from social situations – avoiding social situations where there is the risk they may be criticised, rejected or fail.
Relationship problems
Low self-esteem
Negative self-talk
Emotional outbursts – Sudden and intense reaction to an actual or perceived trigger. To people on the outside it can appear as an overreaction, but it is in response to the deep and intense emotions felt from being rejected or criticised.
Thoughts of self-harm
Rumination – Constant cycle of thoughts and over analysis of the perceived rejection, often the thoughts are negative and there are feelings of not being good enough, letting people down or failing in some way. It can have an impact on the persons mental health and intensify the emotions they are feeling.
Perseveration – Getting stuck in a thinking pattern or on a specific topic,
Self-Criticism – feeling a failure or feeling as though they are not good enough for others.
Negative Self-talk – due to an actual or perceived failure.
Being teased or bullied.
Receiving criticism – actual or perceived.
Being rejected – actual or perceived.
What does having Rejection Sensitive Dysphoria feel like
When I am struggling with my mental health, I find that RSD becomes more of a problem, mental illness often distorts situations and increases negative thinking, making it difficult to see things clearly.
At the beginning of this year, I slipped into a deep Depression/Burnout, which increased my sensitivity to RSD. My sister and my cousins had arranged to meet up and go out for the day, they failed to invite me along, and it hurt. In fact, it cut deeply, I am not proud of it, but the intensity of the feelings that it triggered was so strong and I reacted badly. If I had been in a better place emotionally, it wouldn’t have affected me as badly as it did, but I took it personally. It was very much the last straw in a week of stress and high anxiety. I had a sudden emotional outburst, I broke my cup and self-harmed, I sent my sister some hurtful messages, I felt like I wasn’t good enough for them and the black sheep of the family. It confirmed how I was currently feeling about myself and I hated myself even more. It confirmed what I was told as a child, that I wasn’t liked and that nobody wanted me here, I felt like that young child again. The intensity of the emotions I felt from not being included scared me, I become stuck in a cycle of negative thinking and self-loathing.
Neurodiverse individuals seem to feel emotions more deeply and intensely than neurotypicals, we struggle to regulate our emotions and there doesn’t seem to be any middle ground, you either feel very little or you feel the emotions at a high intensity, which I guess doesn’t help with RSD. Not that that is an excuse for my overreaction.
Like I said, I am not proud of my overreaction, I apologised afterwards, but I know the relationship with two of my cousins has changed for good. I love them dearly, I have always looked up to one of them and they played a huge part in my life growing up. But, It’s not the first time I have felt hurt by them, and as much as I accept my part in it, they don’t seem to be able to see theirs. They seem unable to see that it was hurtful,
Now, that I am feeling in a better headspace, I am able to control it better, the impact events like this have on me has reduced.
When it comes to being ill, I have always considered myself to be a bit of a wimp. When the people around me are poorly, they seem to cope with it a lot better than I do, and are still able to just get on with things most of the time.
But, the more I think about it and looking at it through a different lens, I think I am beginning to understand what is going on.
When poorly, I find coping with all the other stuff really hard at times, for example working in a loud factory when I have cold, I seem to make more mistakes and miss things. My social battery is even less forgiving then it normally is, and its even harder to do the activities I normally have to put a lot of effort into.
Colds
A simple cold can knock me off my feet.
This may sound really weird but the worst part of having a cold, for me, is the blocked nose. When I am unable to breathe through my nose, I panic, it sends my Anxiety sky rocketing. I never really understood why, and when you mention it to people, they look at you oddly.
I am wondering whether it could be a sensory thing, a PTSD thing, im not 100% sure what it is.
Sickness Bugs
Throwing up is another thing that sets my anxiety off, I have a bit of a phobia regarding sick, my own and others.
When my daughter is sick, unless I leave the room, I will be sick also due to the smell (hypersensitivity to smell). Luckily, my partner has no sense of smell and can handle it. I mean, if I am the only person in the house I would deal with it, but If my partners about he does.
Pain
The amount of pain I feel is more than the injury warrants. Im struggling to find the write words to explain what I mean, but in a previous blog post, I mentioned that when someone pokes me in the arms, shoulders or legs, the amount of pain I feel is 10 x more than necessary for the amount of pressure that was applied.
The weird thing is, that at times when I have a significant injury, I don’t always feel much pain.
Anxiety causes me to experience chest pain, but the pain is so intense that there was a time when I believed I had a problem with my heart. Both my dad and brother died from heartattacks, so you can Imagine the health anxiety that stems from that.
Thyroid Problems
I recently found out I have an underactive thyroid, which I have obviously been researching a fair bit, recent reports are suggesting that people with ADHD or Autism are at a greater risk of developing thyroid problems. I am Interested to find out more about that.
The thing is underactive thyroid symptoms are similar to anxiety and depression.
Tiredness – well, tiredness is a constant due to anxiety and social hangover.
weight gain – I put the weight gain down to lockdown and not being able to get out walking.
Depression – I went into a deep depression at the beginning of the year, I assumed it was due to my increased anxiety, intense therapy for trauma, or autistic burnout. I wonder how much of it was down to the thyriod.
Pain – I am always in pain anyway, through anxiety and other reasons. I mentioned the weakness in my arms and legs and the pain to the doctor in 2019, but it was blamed on mental health so I just accepted it.
The last year or so I just generally felt rubbish.
It wasn’t until I kept falling to sleep on the sofa and no-one being able to wake me up that I was sent for a blood test to check for diabetes and thyroid.
Cough
I avoid getting a cough like the plague, when I cough or have a coughing fit, the pain it sends through my head is extreme. It starts at base of my skull and spreads across my head until it reaches my forhead. I see stars, feel dizzy and I have on occasion passed out from the pain.
I have been told its a tension headache, but I am not so sure, because as quickly as it starts, it will disappear a minute or two later. I was told that before I knew about autism. Now I wonder if its due being hypersensitive to pain.
If in doubt, get checked out!
My advice is, don’t dismiss or accept everything as mental health related, yes it may answer things at times, but sometimes there is actually a physical cause.
I am probably opening myself up to being laughed at with some of these, as they do sound really silly, but I cannot help it. Its just a part of my life.
The social difficulties or deficits that autistic people have can make it difficult to build new friendships, but that doesn’t mean it is impossible. Especially between Neurotypicals and the neurodiverse, the different communication styles can often lead to misunderstandings and awkwardness.
For me personally, I am lucky to say that I can count the friends I have on both hands, now. I don’t really have a group of friends as such, its more individual friendships, which is probably down to the fact I struggle with groups of people. My best friend I have known since I was 3 years old from when we met at Playschool, I have a couple of friends I have met since leaving school, then there are the friends I have made through my daughter, and then there are friends I have met online (one I have seen in person a couple of times and the others I have not seen yet). A few of my friends are also Neurodiverse and we thing and communicate on a similar wavelength.
I am so much better at the written word than I am at speaking, it makes meeting people online so much easier than in person; when I am nervous or my anxiety is high, speaking becomes difficult, especially with those I don’t know very well.
When I am talking, more so when I am anxious, nervous, exhausted or stressed, I find knowing what to say and finding the right words hard. Not only that, the connection between thought and speech seems to break, causing me either to stumble over my words or stop talking altogether. When I am with people I am comfortable with it doesn’t happen as much as it does with people I am uncomfortable with. It also happens when I am on the phone.
Some autistic people don’t want to build friendships, some prefer to spend time alone, and others just find it so difficult and find social interactions so draining that its easier not to make friends with others. But, some autistic people want those connections with others, in fact they enjoy those connections, but find it really hard to make them.
For me personally, I do enjoy meeting up with friends or family, but not in huge groups or busy places. I have to plan my time wisely and know what my limits are though, otherwise I will end up experiencing Burnout if I have to many different events in a day or week. I wrote about this in my Social Hangover blog post.
When I am around people I don’t know very well or feel uncomfortable with, socialising is more draining, because I have to mask which uses a huge amount of energy and can be exhausting. When I am around people I am comfortable with, for example my best friend or my neurodiverse friends, I don’t have to mask and can be myself and I know if I say something really stupid they won’t judge me for it. It uses less energy to be able to be myself.
I do find it hard to talk to people I don’t know well, there is no getting away from that fact, in that respect people form an opinion of me and don’t give me the chance to build a friendship or get to know them.
I have recently started to ask people to repeat themselves or to explain if I am unsure about what they meant, and you know what, it is ok to ask. It prevents some misunderstandings from happening. Before, I didn’t have the courage to do that, I thought it would be another thing that would add to my “weirdness”, another thing that made me different.
Misunderstandings can happen for many different reasons, being stressed or highly anxious, Social Anxiety, differences in communication styles, and so on. I have come to realise that quite often people will form the wrong opinion of me, because of how I am or how I react to things. But, sometimes it isn’t the way that they see it; then again I also form the wrong opinion of people for the same reason.
The recent bombshell of autism has made me realise some of my anxiety is down to Sensory Sensitivity and Hypervigilance, certain things cause me to panic and when I panic it changes the way I communicate and at times it can make me sound like a “snob” or judgemental. Which isn’t the case at all, Its just I am trying to mask as well as being unable to tune out the noise and what is going on around me. When I am focusing on so many things at once, talking becomes difficult, and I either sound a bit robotic or like a snob.
Another thing that can cause problems, is the the difficulty in meeting up with people, if my anxiety is high, I am already exhausted so I try not to make any plans. Some friends need that consistency of meeting up and going out, and I can’t always do that, but they take it personally. In the past I was unable to explain it, but now that I can, I find people are a little more accepting about it. Also, I have had to cancel events many times in a row due to not having the energy to be social, again it can be taken personally and they may feel you don’t want to spend time with them, which can cause fall outs.
I am lucky that the friends I have get it, they know it isn’t meant personally and I just need a bit of time.
Emotional attunement or Emotional noise, from other people can add its own set of difficulties. The “vibe” I pick up from the people around me or the person I am talking to can distorted things. Autistic people tend to wear the emotions on their sleeve, it uses far to much unnecessary energy in trying to hide it, where as Neurotypicals often try to hide their emotions. This results in their body language and expressions being vastly different to the vibe they are sending out, which can be quite confusing and means I am unsure in how to respond.
Also, I can “feel” when someone is lying to me or if they are fake, which makes communicating with them very difficult and burns my social battery a lot faster than someone who isn’t. I end up feeling awkward around them and in some respects its just easier to avoid them as it exhausts me trying to communicate with them, other times I will just get on with it and talk to them.
A loyal friend
I know I don’t always get things right, I still misunderstands things and over react to things that don’t warrant it, but I am human. When autistic people feel emotions they feel them deeply, when hurt by someone it cuts deep and often breaks trust (I struggle with trust anyway due to Trauma, once broken it is hard to gain it back).
But, If people take the time to get to know me and once a friendship is formed, I am a loyal friend and go out of my way to help and support my friends when they need me. I am a great listener and give great advice, or so I am told.
My partner and I have been together for 18 years; he is a bit older than me, there is 17 years between us. He gets me, he is accepting and understanding about the difficulties I have and we rarely argue. He does help me to see things differently when I am stuck in black and white thinking, if I have misunderstood he will point it out, our relationship works well.
I am step-mum to his 3 older children, there have been some challenges over the years, but it is a role that I have enjoyed. We have a daughter together, who is amazing. My daughter is very much like me personality wise, although she has more confidence, and we are very much so on the same “wavelength”. Oh, the conversations my daughter and I have.
Family wise, I believe there are a lot more neurodiverse individuals than have been diagnosed in my family, although I am not sure they would admit it. I get on well with most of my family, there have been many disagreements over the years, especially when they are unable to see why there actions are so hurtful. I can accept mine, I accept my faults and that I over react at times because of how deeply I feel. But, often its due to over factors at play also. Then I guess its another one of those neurotypical/autism misunderstandings or differences in how we view the world and what we view as important.
We are no different to neurotypicals in fact that not all autistic people get along with all autistic people, we are individuals and have our own likes and dislikes, and personalities. There are some people that I wouldn’t want as a friend, this is one area I am learning that is ok, I don’t need to be everyone’s friend.
I believe the reason autistic people struggle with change is the unpredictability of it. We often have to plan in recovery days and self-care to enable us to get through the week.Unpredictabilityis exhausting, unpredictability creates anxiety, and unpredictability means we can’t prepare for every possible outcomeand organise our timewell
My calender on my phone is quite colourful this month, this week especially as I have a lot on, not only that, I try to pencil in alone time and recovery days (Not that I am able to get much of that this week).
I know, if I have to many appointments or social events in a row or in one week, I will become overwhelmed and exhausted, so I need to engage in self-care activities and recovery time. When I was not aware of what happened, the sensory overload, the masking and social energy battery, I would make the mistake of doing to much. Which meant I word burnout quickly and dip into a period of extreme depression and anxiety. Now I am aware, I try to manage my time better, in an effort to avoid burnout.
Although, it isn’t always possible to organise my time and the unexpected happens does happen, that is just the way life is. This week, is going to be hard.
I have an appointment with my daughters teacher today, tomorrow I have a doctors appointment (phone call), Wednesday I have my daughters class assembly (which we haven’t had for the last 2 years) and a hair cut. Thursday I have 2 more appointments. Add into that the normal day to day stuff, the school run and the coursework, I am not going to get much recovery time. Not until Friday anyway, by then I know I am going to be shattered and highly anxious..
To be able to manage I have had to come up with some coping strategies, these include:
💜 Being Organised – If I can keep a diary, or weekly planner, it helps massively. I can physically see everything I have to do and what events are coming up. I do use the calendar on my phone, but I also find having a paper version beneficial. It enables me to plan in recovery days and self-care to maintain my mental health, stress levels and anxiety.
💙 Being on time – I hate being late for anything, I have been known to turn up to appointments or events an hour early, being late causes a lot of unnecessary Anxiety. I don’t like to let people down or them being annoyed with me, even if it is something that is out of my hands, such as, traffic or an accident.
🧡 Being Kind to Myself – In the past, when I didn’t know about autism, I would often “beat myself up” over not being able to cope like everyone else. I couldn’t understand why I wasn’t able to manage like they could. Now I am more aware, I realise there are over factors at play, sensory sensitivity, emotional noise, tiredness, social difficulties, masking and a lower social energy battery to name a few. They all have an impact on how I can deal with things and their are definitely days I am more “autistic” than others and it shows.
💚 Keeping a journal – I love to write; I find keeping a journal is a kind of self-care activity for me. It also allows me to become aware of what my triggers are and whether there are times of the month which make things more difficult to manage.
💛 Emotion Tracker – Pretty much for the same reason as above, if I don’t have time to write a journal, I always make sure I still log my emotions. Being aware of my emotions and energy levels allows me to recognise when routine is a must, and when I may struggle with change and being able to cope.
❤Mental health Tool kit – having a mental health toolkit to hand is also beneficial, it allows me to engage in strategies to manage my mental health.
🤎 CBT Folder – I have a CBT folder from the times I accessed therapy, not only are there activities, but there is fact sheets explaining different things, for example, Anxiety and its effect on the body,symptoms, depression, and the effects of trauma. It stops me from being so hard on myself.
💜 Being aware of the Warning Signs – knowing what my warning signs are is another step to halting problems (with regards to mental health) in their tracks and participating in self-care.
Its not always about the change itself, its often about what it means and what comes with it.
It may sound a bit, intense, but it makes things a bit easier for me. I mean if it results in experiencing less Burnouts, its definitely worth it, isn’t it?
I hope that by sharing this it helps you in some way.
Often, I would be so wrapped up focusing on the negative things about myself and the things I found difficult or struggled with, that I failed to see the Positives. ………and, there are positives, many positives in fact.
So, let’s focus on some of the weird and wonderful traits of Autism.
Sensory Sensitivity can be a bit of a nightmare at times, it can trigger anxiety, I used to think that it was all related to anxiety in the past. But now I am aware of it, I realise that there are many times when I have felt rubbish or anxious and its actually down to a sensory thing.
Hearing – There are times, more so in a group setting, when I can hear people quietly talking 10 metres or more away, yet I can’t hear or focus on the person speaking to me. I am unable to tune out background noise.
I can also hear sounds that no one else can hear, I have to hunt it down because it is really bugging me, plus I have to prove that I am not nuts and there is actually a noise.
Loud Noises – More so when I was younger, loud noises could cause panic, especially when they happened without warning. Now, although my heart rate will still increase, I can manage the emotions it triggers better.
I can cope with fireworks, because often you are prepared for it, you plan to go and see a display and it is on your terms. That being said though, my daughter isn’t quite at that stage yet, she loves watching fireworks, but she can’t always handle the sound. There was a stage she was terrified of the school fire alarm; she is getting better with it now as they now give her warning about it on the day it is going to go off and she knows it only happens once each half term.
Smell – I have a powerful sense of smell, I can not wear perfume at all, I can’t cope with the smell of Lavender or Petrol, because they all cause me headaches, make me nauseous and can make it difficult to concentrate. They can overpower and overwhelm me.
If the kitchen bin is on the turn and starting to give off that smell that only a kitchen bin can, I can smell it long before anyone else. It’s the same with smoke or if there is a gas leak.
Yet there can be other times when I can not smell what others can, even when I try hard to pick up the scent, I just can’t.
Heat – I prefer the cold than I do the heat, in summer I unable to sit outside for to long, because it just makes me feel uncomfortable and on edge. Part of it is possibly down to the fact that I can’t see very well when its too bright outside to.
I love winter, my favourite thing to do is to go for a walk on a frosty or snowy morning. Sounds are muffled and I love feeling the crunch of the snow under foot. The atmosphere is different when it snows.
Touch – there are two types of touch, the one you receive and the one that you experience yourself (I’m not explaining very well). When someone poke’s me in the legs, arms or shoulders, the pain I experience doesn’t really tally with the amount of pressure used. What I mean is, a light touch can cause a huge amount of pain. My step kids used to find it highly amusing to poke me in the arm or leg without warning, not only does it really hurt, but my skin will go bright red at the lightest of touch. I cannot have a massage; it just hurts way too much, and I cannot deal with it at all.
I can not do the washing up, we are old school in my house and don’t possess a dishwasher, I can not touch the greasy plates as it sends shivers down my spine and I throw up. Another thing that I can not stand touching is cotton wool and certain labels in clothes will irritate me.
My daughter on the other hand, is very much a sensory seeker, she loves having her back tickled, it helps to calm her down when she is upset. She will also play with the silky labels in clothes, she often cuts them out so that she can hold them in her hand and run them through her fingers, she finds it therapeutic. She will not wear jeans, she hates the feel of them on her legs, she would much rather wear a skirt, but if she does need to wear something on her legs, she prefers leggings.
Taste – I can not tolerate spicy foods, even the mildest curry makes my mouth feel as though it is on fire, the thing is, I actually like the taste, but I cannot deal with the spice, it is just to strong a flavour.
The ability to feel other people’s emotions, feeling them like they are your own, you may not always know the right thing to say or how to respond, but you know exactly how they are feeling.
The Positive
You know exactly how they are feeling.
You can tell when someone is lying to you.
You make a good confidante and a great listener.
The Negative
When you are in a group of people or in a crowd, it quickly becomes overwhelming because you can’t shut the many different emotions out, you literally feel every emotion at once. On a deep level.
It can be difficult to work out which emotion belonged to you in the first place and which ones belonged to everyone else.
It can be confusing when the emotion you feel from someone does not match their body language or facial expressions.
You can’t watch certain things on tv because you can resonate with the character or what someone is going through so deeply, that it can consume you. Especially, when someone or an animal is being hurt or killed.
Both my daughter and I have great imaginations, sometimes getting lost in the worlds which we create. It is great having such a vivid imagination, it makes making up story’s fun. There is a downside to it though, we can see every possible scenario to a situation or event at the drop of a hat. It happens so quickly, the trouble is, we will often only focus on the worst-case scenario, and it will prevent us from doing an activity or stop us from going somewhere.
Now that I am aware that I do this, I try not to avoid doing as much, growing up it caused me to miss out on so much. I was quick to say no or to cancel. I don’t want that for my daughter, if possible, I am trying to encourage her to do it anyway and to experience so much more than I ever did. It worked well recently on a school trip, when ever she spoke of the things that could go wrong, I tried to change her focus to the things that could go right. She went, and you know what, she had an amasing time and wants to do it again. If she had let her imagination take over she would have missed out on the experience.
I love knowing how things work and to learn new things, hyperfocus will allow me to learn everything there is to know about a subject that I am interested in. Psychology, Mental Health, Child Care, axolotls are passions of mine.
The downside is, when it’s a subject you do not enjoy, or you are not interested in. Trying to learn and focus on it is difficult, in fact it can become a chore and I will find every excuse to get out of it. I have been trying to read a book that I need to read, but I just cannot get into it, I find I don’t take it in and have to reread a page, or chapter I have already read. Yesterday I bought a new book, I thought I would have a quick flick through, it didn’t work out that way, I have already read three quarters of it and it’s a quite a thick book.
Eye contact is weird, Eye contact is awkward, and it seems to be a rule that eye contact is needed for listening.
I am better at keeping eye contact for short periods than I used be, but there seems to be a fine line between keeping eye contact and staring, how do you know whats considered enough. I have had conversations when I look away and when I look back I can see the annoyance on the other person’s face because they assume I am not listening.
I find it easier to take in what someone is saying when I look away, when I keep eye contact it feels uncomfortable and all I can think about is how much is too much, what if they think I am staring, omg what if they think I fancy them, my mind is so focused on the worry of eye contact that I miss what they have said.
I have been accused of staring at people on many occasions, I am not, what happens is there are times I zone out and go into thinking mode. I don’t even see them, what I can see are the images of from using my imagination. I am there but not really there, I can loose myself in far of lands, I maybe inside the program I watched the night before.
I will update this blog post as and when I think of different traits, as I know there are more which need to shared.
I llove how my brain works, now, I love that I notice things that others do not, I love the conversations between my daughter and me. To some one on the outside looking in, we could be talking nonsense, but I love nothing more than talking with my daughter about a zoo she has created in her imagination, with Ice skating giraffes, juggling baboons and an elephant as the ring master. Let’s face it, it can make things far more interesting than reality.
I listened to a video on Facebook earlier, by Joe James the Autistic Photographer, he has a great way of explaining things. The video was talking about the connections in the brain and how at certain ages the brain gets rid of these connections, in Autistic people that doesn’t happen, not completely anyway. We are left with the connections that were made when we were babies and through out our life. When babies are newborn they are born with heightened senses, its for survival and protection, Autistic people don’t lose these connections in the brain hence to problems with Sensory Sensitivity. I know need to find out more about this, so if you have any links I would be grateful if you can put them in the comments.
The last 18 months has been a bit of a roller coaster ride, perhaps some may say it has been a journey of enlightenment, one which started with trying to overcome my social anxiety.
Except, I knew there was more to it than just anxiety, there was something else going on. Something that I didn’t have a name for.
All it took was for a therapist to ask the right questions and one who actually listened to the responses.
Okay, perhaps ‘a journey of enlightenment’ is a bit steep, I’m still trying to figure things out, im still learning what’s what and trying to change the way I see myself. I am still trying to work out how I feel about Autism; I am currently on the waiting list for an assessment, but from what I have read and talking it through in therapy I think its pretty certain I will end up with a diagnosis. I am pretty certain I am Autistic.
To begin with, I thought it was a disaster, I mean Autism was permanent, Autism was not something I was going to be able to overcome. In the last couple of months my opinion has changed drastically, ok, so its not something that is going to go away. But, now I know what it is, I can work with it. I can make some adjustments.
What I used to think was my Anxiety kicking off, I now believe is partly sensory sensitivity related. All I have to do is make some adjustments, actually, just knowing what it is has helped loads. As soon as I start to feel my anxiety rise, I look for the trigger, it can be something as simple as needing to stand in the shade so I can see properly.
I used to think that Emotional Noise was a curse, now I can see its good points, I just need to learn how to work with it and gain some control over it.
Empathy, Emotions and Emotional Noise
I will let you in on a little secret.
Autistic people do have empathy!
Autistic people experience emotions deeply?
They feel emotions so deeply that it can be a physical pain.
We have to much empathy perhaps. Its one of the reasons I struggle with groups of people, I can feel the emotions they are experiencing, I can sense it in the atmosphere and I take it on board. When you can feel a mixture of different emotions from different people all at once it becomes confusing, the intensity of them often leaves me feeling overwhelmed and with a strong need to escape.
Afterwards, when I am at home, trying to decipher which emotions were mine to begin with and which belong to other people can be rather difficult. It can take a while to recover from it.
Which is why I avoid busy places when possible. Social Anxiety has ruled my life for so long.
I used to think it was an Anxiety thing, long before I knew about Autism, but no-one I spoke to about it understood what I meant, in fact the looks of skepticism I received put me off talking about it.
Even with one or two people I pick up on their emotions. Sometimes it is a really handy tool to have, I can tell when someone is lying to me for instance. But, it can also create its own confusion, when the emotion I feel from someone doesn’t match their body language or expressions it can result in misunderstandings. Which, let’s face it, is a lot of the time. People try to hide what they are feeling around others don’t they.
I struggle with my own emotions, Anxiety, Sadness, Fear, Anger, excitement, Stress to name a few, are all strong emotions and felt deeply. Sometimes I struggle to work out exactly what it is I am feeling, more so when I feel a variety of strong emotions at once. The intensity of them floor me. When I feel trapped in the midst of these emotions, there is no hope of me trying to explain to others what I am feeling because putting it into words is just to difficult.
It has been now been 12 months since the bombshell of Autism was dropped (it feels so much longer than that), I have experienced a mixture of emotions, fear and grief were a big part of that, but now I am a little more positive. As someone quite rightly pointed out to me, I am still the same person I have always been, I just have a greater understanding of my difficulties and strengths.
The Journey ahead
I am the type of person who likes to know how things work, Mental Health and Psychology …………………….. I have read tons of books and explored the Internet on. I am currently doing my second Mental Health course.
I now have a greater understanding of why I do what I do and why I react to certain situations the way I do, I am slowly working out ways to work with it and to overcome some of the difficulties. I wish there was a manual that told you how, but no such luck, so I am having to figure it out for myself.
Looking back over my life I am able to understand certain aspects better, like the difficulties I experienced at school or at work or with people. Some of it could have been down to emotional noise or sensitivity to sound and smell, some of it Anxiety and PTSD, I am gradually figuring out how to get around it and how to deal with the reactions. How to stop them from happening and not beating myself up over them when they do.
Social situations can be a problem for many different reasons, from emotional noise, misreading facial expressions, to misreading what was said. Or just because of the fact that social skills don’t come naturally to us. Also, if there is a lot of background noise it can make social situations difficult, meaning we must work extra hard at listening to the person speaking to us and put in extra work at responding to them.
I mean, there are only so many times that you can ask someone to repeat themselves isn’t there, especially if you don’t want to annoy them. I have been known to just agree and hope I’ve answered in the right context.
Now that I realise that I am probably autistic, it has made things a little easier; I have to assume that I may have misunderstood what someone has said or misunderstood their facial expression, so there isn’t much point in dwelling on it. Whereas before I probably wouldn’t be able to stop thinking about it, wondering whether they really meant what they said or whether that facial expression meant something.
The trouble is, we try so hard to fit in and to be like Neurotypicals, that we spend so much time focusing on social situations and dissecting and over analysing conversations afterwards, to enable us to achieve it. It’s exhausting; but we yearn to be normal and to be liked, being ourselves often means we are viewed as weird or a little odd. In some cases, it isolates us and makes us different from our peers. Kid’s will tell you how it is, if you are talking about your latest topic of interest and its vastly different from theirs, you stand out. If you say something they consider to be stupid, they will tell you.
We start doing this from a very young age, it becomes engrained and is a habit that is extremely difficult to break. Some of us end up with social anxiety and sometimes, especially if energy levels are low, it is just easier to not put ourselves in that position in the first place, sometimes it is easier not to talk.
What happens during a conversation?
Am I making enough eye contact?
What does the facial expression mean?
Am I understanding correctly?
Stumbling over words and beating myself up about it, because the connection between thought and speech does not flow well, especially when its people I feel uncomfortable with.
Noticing every sound, movement, and smell around me and not being able to shut them out which makes it difficult to focus on the person talking.
To many conversations going on around me or the conversation quickly jumping from one subject to another making it hard to keep track.
Am I oversharing?
Am I talking too fast or too loudly?
Do I sound stupid, and do I make sense?
It’s too sunny and too hot.
I don’t know how to reply?
Is it my turn to talk?
Has the conversation ended?
Is it time for me to leave?
What does that look mean, omg, is there something stuck to my face?
Now that I am aware that this is what I do, I am trying to break the habit and try not to obsess over it as much. If I am unsure about what has been said, I am starting to learn to ask for clarification or for them to repeat what has been said.
During some CBT sessions this year, I made several visual reminders to go into my CBT folder. The Social Hangover poster was one of them, it reminds me to make allowances and to stay within my limits, if I don’t I will slip into an episode of Depression or Burnout.
Burnout is so much harder to recover from than Social Hangover, I will cover this in another blog post, If I am not careful it can last a long time.
I have always struggled with anything social, I always end up paying for it afterwards, in exhaustion, pain, brain fog and overthinking. The symptoms of a social hangover are very similar to that of drinking to much alcohol, not that I drink alcohol anymore, I hate the feeling it gives me (perhaps it is a sensory thing) and I hate not being in control.
Everyone has a social battery, even social butterflies, it just seems they have a higher capacity for social energy than someone who is Autistic or who has Social Anxiety.
How to Avoid Social Hangover
Try not to plan to much into one day or one week – when I have to many things to do in one day, especially if they are social interactions, I become highly anxious and exhausted. It takes a couple of days of staying home and doing nothing to recover from it.
Know your limits – Social events or talking to people can take a lot of energy. Be aware of your social battery, talking to a friend you are comfortable with may use less energy than talking to someone else, for instance at a doctor’s appointment.
Recovery Days – If you have a lot scheduled in, allow for some recovery days where you do very little at all.
Self-Care – certain self-care activities, such as keeping a journal or walking in the woods can enable you to recharge your social battery. Finding the right balance can be crucial.
The short answer: Social events and social interactions.
The long answer: Different social event and different social interactions can drain my social battery at different rates, for example, talking to a friend I have known for a long time and who I feel comfortable with doesn’t take as much effort and masking as someone new or talking on the phone so it drains the social battery at a slower rate or drains less energy.
A social event, such as a meeting, drains more energy. Groups of people take more effort as there is usually a lot more chatter, smells and lighting, which can make it difficult to focus on and listen to the person speaking, not only that, there is a lot more emotional noise to contend with.
A party on the other hand, drains a huge amount of energy quickly, its loud due to the music playing and the background noise of lots of people talking, also if there is a disco you have the lighting which may cause sensory overwhelm for some people, it takes a lot of effort to focus on and hear the person talking to you. Again, you also have the emotional noise to deal with as well.
Talking on the phone, lets just say that it isn’t my favourite past time, drains a lot of energy. Especially, if its a call that involves a call centre where you can hear all the people talking in the background. I struggle to drown out background noise, which makes listening to the person you are talking to on the phone really hard, especially if there are lots of questions or information that you need to remember.
I rely heavily on email, I find I am more articulate with the written word, with talking I stumble over words and the connection between thought and speech becomes “foggy” or breaks. Whether that is and Autism thing or a Social Anxiety thing I am unsure, although I suspect that both have a part to play. I have recently started to ask for an email after appointments or phone calls, or rely on the minutes after a meeting, especially if it is things concerning my daughter, because I find remembering everything that was said a problem, partly due to high anxiety and partly due to having to work so hard at talking. If I can’t remember, I will panic or it triggers high anxiety.
It isn’t just the social event or interactions themselves, its the aftermath of it, the overthinking and over analysing of it – Did I understand what they meant correctly, did I misread their facial expression, did I say the right think or sound stupid. It can be relentless and difficult to move on from. Although, now I am aware that its likely that I have misread facial expressions or misunderstood what they meant, so I ever ask or just try not to worry about it. In the past I never had the courage to ask.
Me
In the past, more so in my teens and 20’s, I would turn down invites and avoid social interactions where possible, Its only very recently that I have realised that I actually like connecting with people and I try not to decline or avoid as much as I once did. Since my Daughter was born, I have tried to accept more invitations or to attend more events, but there are still some things I just can not do. It’s just that I find it difficult and all the worrying it can cause, realising that I have a social battery has helped, it has allowed me to work out what my limits are and what my energy is spent on.
It also means that I can plan in recovery days in between social events and limit the time I spend in situations which burn energy quickly.
A few years ago I had to go to a centre to gain my English and Maths qualification, It meant spending days in a place I didn’t know with people I didn’t know. There were people coming and going constantly. By the time I got home I was exhausted, I felt “ill”, in pain, and was highly anxious, it took days to recover from it. I quickly realised that I could not cope with two days in a row, I needed time out spent at home with doing very little in between, even with those days in-between I ended it burning out and slipping into an episode of depression. But, I didn’t know about Autism back than, Its only recently that I have started to learn coping strategies.
Even as a child, if I did go to sleep overs or parties, I never made it past a certain time. I would get worn out, I would either fall to sleep way before my friends and cousins or I would have to shut myself off in a quiet room. I was often found sat on the stairs at family events, It was just something I did, even if at the time I didn’t understand why or how much sensory overwhelm was a problem for me. It allowed me the time I needed to recharge.
I have recently, with the help of CBT, begun to start developing coping strategies and learn what my triggers and limits are, with any luck as time goes by I will experience less episodes of Depression and Burnout.
