I’m trying to write another section of this blog and I am being constantly interrupted by my lovely husband. He is watching a TV programme about corporate fraud and is commenting on it and telling me his experience and talking at length about the complexities of the situation. Usually we would be having this discussion together, but today I am trying to write this blog and I’m getting really frustrated. It’s not his fault. It’s me. But it’s frustrating because I am losing the flow of the other section I am writing and I know from experience that I may not get it back.
Earlier I was frustrated with him when he interrupted me while I was speaking. Twice I was unable to complete the same sentence. Twice. If this happens I just stop speaking now. I think my tolerance for being interrupted is getting lower as I get older.
I have a couple of friends who do it too. They tend to interrupt to turn the conversation to themselves which makes the whole thing exhausting. I think this is why I often become the listener within a relationship. I definitely don’t want to be competing for time within a conversation so it’s easier to take on the role of listener. This is usually fine because I don’t tend to want to talk about myself or my difficulties. It can be upsetting though when I have disclosed to someone and they then start talking about themselves rather than asking about the difficulty I have shared. This situation just reaffirms to me not to share my inner self, or difficulties, or worries with anyone, but instead to continue masking. Which is exhausting!
Yes, yes, I know. I don’t like to be interrupted myself so why do I do it to others. When I interrupt others its usually because we are discussing a topic I feel passionate about. That might be education, welfare, healthcare or any social justice issue. These are my ongoing special interests and I love to discuss these with others who are knowledgeable about them. I like to learn about these topics through news articles, professional studies and podcasts. I can then use this knowledge within the conversations, often starting my monologue with “I was listening to a podcast the other day and…”
Other times are when I have to say something while I remember or it will be lost forever. These usually start with the words ‘don’t forget’. I’m reminding the other person of a task or event or procedure we have previously agreed on, while also reminding myself. This is the one that frustrates my daughter the most.
#autism #autistic #neurodiversity #family #autismmum #autisticmum #neurodiverse #diagnosis #autismandgirls #womenandautism #anxiety #interruptions #beinginterrupted
“There’s no such thing as a silly question!”
I’ve heard lots of people say this phrase, but not everyone actually believes this. I am a questioner, an enquirer, a seeker. There is so much I want to know. If I learn a new fact and it interests me I want to know more; I want to know everything about it; I want to know who, what, when, how and why. If I’m learning a new skill, or new procedure, or new area of study, I want to know everything… now!
I use questions a lot in my life. As well as using questions for learning I use them for clarification. I will double-check something just to make sure. If an instruction or statement is unclear to me, I would rather ask about it than get it wrong. I often say ‘can I just check to be sure…’
However, I have been in lots of situations where people don’t like the questions. I think they feel insecure in the situation somehow; that I am questioning them rather than the learning or the procedure that is taking place.
Once such situation was when I was in the high dependency unit after my first surgery. I had been in there for several days, being looked after by some amazing nursing staff. Although I was very poorly, I was often awake. I would ask the nurses about the medication they were administering to me, or what the beeping on the machine meant for example. Every few hours a few nurses would come round to turn me on the bed. This was to reduce the risk of bed sores. Each time this happened, they would patiently wait for me to be ready. They would explain fully what each person would do, how they would move my body. I would double check this each time and each time they were patient with me. I felt very well looked after with these nursing staff. After I had been in HDU for five days I was well enough to move onto a regular surgical ward. I had lots of different tubes and wires attached which needed to be removed. In the morning I had my central line removed. It can be a tricky procedure, but again the anaesthetist who performed it explained it to me very well and put me at ease. In the afternoon I had a new nurse that I hadn’t met before. At medication time I asked her about one of the tablets as it looked unfamiliar. I think I said something like ‘Is this one for the pain?’ Her response was a gruff ‘Just take the pills!’ I was shocked. Mostly because of how much her unfriendly manner contrasted with the excellent care I had received so far in HDU. A couple of hours later the doctors came round and told me I was ready to have my NG tube removed. For those who don’t know, an NG tube (a nasogastric tube) is a thin tube which is placed through the nose into the stomach, it can be used for feeding or intubation. I my case it was used to remove the excess acids in the stomach as I had been nil by mouth since the surgery. Anyway, the new nurse came along and it was to be her task to remove the NG tube. I had never had this procedure done before; the tube had been fitted (is fitted the right word? Inserted? Installed?) during the surgery when I was out cold. Of course, I had questions; what will it feel like? Should I breathe in or out? Should I hold my breathe? Will you count down and then pull it out? Will it come out quickly or slowly?
‘I do know what I’m doing.’ She said with an angry tone and just whipped it out. She just pulled it out without warning or preparation. I was in so much shock. I felt violated. I was so upset that I cried. When my mum arrived a bit later I told her and we actually made a formal complaint.
I tell this story to illustrate how different people react to questions. Some can see the message that is being sent in the questions. Like those who teach my daughter and give her the space and time she needs to ask her many questions as they recognise or acknowledge the anxiety that is contained within them. Others see the questions as a personal attack on themselves; that they, and not the topic is being questioned. The reaction of these people to the questions of others can be damaging. Those who teach my daughter who ignore her questions are as damaging as the nurse who physically hurt me.
Questions are the best way to learn. That is how we learn; how we glean information from those who know more or know better. How we solve problems and move forward.
Questions are also how we try to make sense of what is going on around us, how we make sense of the world.
Questions are how we try to gain some control of the world around us; if I understand it I can try to control it.
If my questions are ignored or belittled or disregarded, then you are ignoring and belittling and disregarding me.
If I don’t know what is going on around me and I feel out of control, several things may happen; I may learn that I don’t matter, thus affecting my mental health and well-being; I may do something else to gain that sense of control, including acting in unexpected ways, affecting my mental health and well-being; I may conform to what those around me are doing, but never really understanding what I am doing or why, thus affecting my mental health and well-being. I’m sure there are more things that may happen that I cannot think of in this moment. None of these are appealing to me for. I would not want myself, or my daughter, or any person to have to live in this way.
#autism #autistic #neurodiversity #family #autismmum #autisticmum #neurodiverse #diagnosis #autismandgirls #womenandautism #anxiety #questions
Masking has been in the spotlight recently within the neurodiversity community (and beyond I hope), and here are my thoughts on what masking means to me.
“I tend to be really affected by the people around me”.
I have heard myself say this phrase at several times over the years. I’ve said it to friends, therapists, my husband. I’ve usually said it almost as a justification for actions which may seem out of character or a perceived change of behaviour. This is the main aspect of what I know to be masking. There have been plenty of times that the masking is deliberate; times when life was at such a low point that if I had not put on my mask each day I would have been unable to function. Times when my physical health has been poor, or my anxiety has been high, or I’ve had difficulty with cliques at work, or I’ve found it difficult to cope with peoples’ ineptness at work. At these times, and many others, I have had to deliberately put on my mask of ‘professionalism’ and ‘having it together’ and ‘getting on with it’ and ‘being in control’.
This is exhausting.
In my late teens and twenties I drank a lot. I used alcohol as a way of conforming, of coping, for courage! I went dancing – which I love, in loud crowded clubs – which I hate. I had my own dance style but would constantly watch and copy what people around me were doing. With my friends I would be the sensible one. There were times when we would be out and they would do some (in my opinion) quite risky behaviour. I was too sensible, or too scared, or too worried to do anything too risky. With these friends I always felt a little behind. They were a little older than me. At the time I thought that was why I felt a little disconnected, why I didn’t fully understand them. Hindsight tells me it wasn’t this.
My relationship at this time was turbulent. My mum used to say that me and my partner (before we had my daughter) were like an English summer – two fine days and then a thunder storm. He was the only person I ever really argued with. I don’t argue with friends or my husband or family – just him. Again, was this a type of masking. Looking back now, I feel it was a messy combination of taking on the actions and habits of this person while at the same time trying to fight the actions of this person. I was SO UNHAPPY. I felt trapped but unable to do anything about it. My romanticism of our relationship and my hopes for the future kept me there. I used to listen to love songs and wish he could be like that, say those things, look at me that way. Now I am with a man who does.
I have done many things that I don’t even like in order to fit in. To appease others. To be liked? I used to listen to Drum & Base with my boyfriend. This music was physically painful for me. It would literally make my skin crawl and my muscles tense. He was really into it, so i just put up with it banging through my head and body like a sledgehammer. We would go to house parties and listen to the banging beats in hot dark rooms surrounded by strangers. Can you tell how awful that was?
The other thing is football. My ex was a huge football fan. I had the view of ‘if you can’t beat them, join them’, and ended up, over the years, going to football matches with him. Several times a week we would be in the pub watching the game. I had my own kit top. I went to really important matches and saw great players and great teams and great goals and great wins. I would really get caught up in the emotion and the atmosphere and the crowd (I hated the crowds, especially leaving and on the tube), but after the match, I wouldn’t remember anything. This would really annoy my ex. He told me I was selfish and unappreciative and it would cause another row. How could I forget watching the greatest teams and players in the world? I guess it’s because it was never MY special interest. It was his, and I never really cared about it in the first place.
After I had my daughter I decided to go back to church as it was an aspect of my childhood that was safe, secure, consistent, and where I had friends that were real. My childhood church was not the right place though as I felt that they still saw me as a 12 year old. More on my journey in church another time.
Over the years I have had more than my fair share of things to contend with. Dealing with these while keeping up the pretence of being in control is truly exhausting. Despite this I feel compelled to do it. It’s almost automatic, just a part of my personality, the way I’m made.
But when it comes to my everyday masking, the taking on of the actions, mannerisms and behaviours of those around me, I’m not even sure if I do it deliberately or if it’s just a natural thing for me to do. I know I like to ‘people watch’; I find people interesting. I like to wonder about their lives, their journeys, their stories.
Friendships are different. Of course I am interested in my friends, but friendships can be confusing to me. Every close friendship I have has grown within a work or studying environment. I tend to have a small group of colleagues around me and make one really close friend. A friendship that lasts. We tend to get to know each other as people, we see we are similar, or trustworthy, or supportive, or caring. We tend to confide in one another. After the initial attraction there’s usually something that binds us together; a joint belief, a similar history, a need to find a tribe. These are the things that make my friendships tight.
I no longer see people from my own school days; I only had a very small group of friends at that time anyway. I have one friend from childhood. I love my friends and like to spend time with them, but to be honest it too can be exhausting. When I was teaching it was easier to be a good friend. Everyone accepted you could only easily meet socially at the end of term. Everyone in teaching speaks endlessly about teaching, so if teaching is your special interest you don’t look out of place when you talk endlessly about it too. Having friends who are also teachers is easier.
At other times I am masking the whole time. Small talk is confusing to me.
Do you really want to know how I am?
Do you really care how my week was?
Is the weather really affecting you that much? I’m sure you don’t have a health condition.
Let’s talk about something that matters rather than this b#%ll+£t.
Let’s talk politics, or education or healthcare. Let’s talk about love and plan for the future.
Small talk is exhausting.
“You’re such a tough cookie”.
This is my main problem with masking.
I don’t WANT to be.
I don’t want to have to deal with the never-ending stream of crap that comes my way.
I have literally held in tears for hours until I could be in a safe place to cry. Hours!
When Your Facial Expressions Give You Away
So, masking may well be my super power, but there are lots of times when I am unable to conform and fit into the social norms of the given situation. There have been a number of times that I know my facial reaction has betrayed my inner thoughts and feelings about a particular situation. One such time was at the hospital when my surgeon gave me unexpected information; information which contradicted that he had given to me previously. I can’t remember exactly what was said, what I remember was my mother sat next to me and her saying “you should have seen your face when he said…”. I thought I was holding it together so well. Obviously not.
Other times that’s are tricky are when I am given a gift. I probably tend to over react and be extra thankful when given anything. I feel it’s important that the other person really does know how much I really do appreciate the thing they have done for me or given me. If I get an unexpected gift, or one I may not like so much, this can be difficult to do. This can make me seen ungrateful.
Even in the car, when someone lets me out of a side road and into the main traffic I thank them in three different ways, just to make sure that they know I am grateful. That is even though I don’t know them and will never see them again.
So, I digress, masking is exhausting and there are times that I’m unable to hold it all together.
Sometimes I’m not sure what the real me is.
#autism #autistic #neurodiversity #family #autismmum #autisticmum #neurodiverse #diagnosis #autismandgirls #womenandautism #anxiety #masking
I love timetables. I remember the first year at secondary school and receiving my first planner. I remember looking through it and seeing all the spaces for the timetable and the lists and the space to write the homework or notes each day. I loved filling in my subjects and colour coding them. At that time the code was random, just whatever looked nice on the page. I wrote in my neatest handwriting and was careful to shade each rectangle so that each stroke was parallel to that of the one next to it. It was perfect.
To be honest, like most children my planner didn’t stay neat and tidy for too long; the handwriting got messier as the weeks progressed and the planner itself became dog-eared in my bag. But each year I looked forward to completing a new timetable. As I learned several instruments and did extra-curricular activities, there were many more timetables to fill in throughout my school career.
My real love and appreciation for timetables grew as I started to work in education, especially when I finally went to university to undertake my teaching degree. This was when the true art of timetabling and the joy of the practicality of it began to bubble in me. One of the many handbooks we were given on our first day at Teacher Training College was the National Curriculum. In that book were the thousands of objectives that were to be taught to the children of the nation, all divided into age groups and subjects, and the whole document was colour coded!
Yellow was for literacy
Blue was maths
Orange – science
History is purple
There was a whole rainbow of school subjects.
I loved it. It was perfect to help me get organised.
I went and bought a hard backed ring binder in each colour and I even found a note pad with colour coded pages. My notes on the lectures for each subject; my lesson plans, resources and assessments; everything for each subject belonged in the colour coded folder.
Every timetable I wrote, whether for myself as a student teacher, or for the students I taught, I would colour code in the same way, from that time and all through my teaching career.
Yellow was for literacy
Blue was maths
Orange – science
History is purple
Every timetable I wrote.
I even use timetables in my life at home. Especially in the holidays. I would create timetables to show how my daughter and I would spend our days and weeks. I would plot in immoveable events, such as visiting friends or coach trips, and then fill in the rest of the time with days out, trips to the park, lunch at home, rest days, etc etc. I was always careful to ensure a balanced week and to include rest days, so as not to over-do it. My heath was increasingly fragile and this was important.
To prepare for after one of my surgeries I even prearranged with my friends when they would visit and I created a timetable for this too. Me trying to gain some control in an uncontrollable situation. And that is the beauty of a well organised colour coded timetable. It’s control. You can see at a glance where you are supposed to be and what you are supposed to be doing. It’s an attempt to claim control of a world where you feel constantly out of control. Where you are subject to the rules and conventions of others; rules you do not always understand or agree with; but rules you have learned off by heart; rules you are committed to following to fit in. Or to not stand out. To not appear different. Because you know if you are not following those rules, people will realise you are different, and you will be rejected.
The other important thing about timetables, the reason I still try to use them in my life now for myself and my daughter is this. Without a clear timetable in place nothing gets done. If my day is not organised I just lose all concept of time. When my daughter’s dad first moved out and she started spending weekends with him, I would spend whole days by myself doing nothing; I’d be sat on the sofa reading or marking books or watching rubbish telly. Before I knew it the whole day had passed and I had not eaten, or bathed, or had a drink or anything. I wondered if I was depressed, but I wasn’t! I realised that without the routine of a young child to cater for, my own sense of routine was lost. Unless I wrote down what to do and when to do it, it just didn’t get done. So, I wrote laundry timetables, cooking timetables and cleaning timetables just to ensure these things happened.
Now I still need timetables, but I try to be more relaxed about them. But it is still true that things don’t get done without them. I can spend hours in my studio creating new jewellery and totally lose track of time. I will procrastinate and avoid ‘unwanted’ tasks for days and weeks; even when I have persevered in timetabling them in to my week. It is something I still struggle with. I don’t really know what the answer is. My aversion to particular tasks, usually paperwork, is anxiety provoking and almost physically painful at times.
It’s almost a hope that timetabling them into my life will get these things done.
I’m still waiting.
#autism #autistic #neurodiversity #family #autismmum #autisticmum #neurodiverse #diagnosis #autismandgirls #womenandautism #anxiety #strategies #timetable
This is a great post about the assumptions made about our children. These assumptions can lead to damaging outcomes especially heightened anxiety and a general feeling of being overwhelmed.
I am blessed with a daughter who has a large vocabulary and clear dictation. She can read fluently and make up complex sentences. She can remember accurate facts about things and repeat these readily. She can make choices, recall events and express her opinion.
As a result of all of the above it is assumed (wrongly) that her autism is mild, has limited impact on her life and something to be of little concern about.
People are too quick to assume if a child is verbal that everything is fine.
Let me assure you that just because an autistic child can speak it does not mean their autism is mild.
Having speech does not mean a child necessarily understands what you are talking about.
Having speech does not mean there are no learning difficulties.
Being able to talk does not mean a child can effectively communicate.
Most of my autistic…
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I have a long history of physical health conditions and poor health. While researching girls and autism to gain knowledge to help my daughter, I also learned about the link between Autism and digestion problems, specifically Ulcerative Colitis, which I have suffered from for many years, having been diagnosed in 2002. Since then I have been on strong medication, including anti-inflammatory medication, high doses of steroids and immune suppressants. Since these proved ineffective, I have had a series of major surgeries over a period of 3 years starting in 2009. Unplanned emergency admissions have also been a regular occurrence, happening every six weeks or so at its worse.
In childhood I was often sick. I had asthma, eczema and allergies. This was another difference and potential target for bullying. In my late teens I had unexplained abdominal pain and anxiety.
When I first started working as a teaching assistant, I would be sick with a heavy cold every weekend. When I started teaching my Ulcerative colitis would flare and be worse at the weekends. It was like my body held it together during the week so I could work at a job I enjoyed, but it would give up and collapse each weekend and an effect of it.
A couple of years ago I was in so much widespread pain, especially during the colder months, that I was under a rheumatologist. She felt my symptoms of pain and fatigue were due to fibromyalgia. I now realise it is probably due to autism.
The thing that has prompted me writing this today is the fact that I am feeling really unwell. My anxiety has been building over the past week or so as the beginning of term approaches and I write this after dropping my daughter off for her first day in Year Nine. I am feeling frustrated with their ‘wait and see’ policy regarding her support, which to me shows they have a complete lack of understanding regarding her needs and difficulties.
Last night I felt so poorly; my tummy was painful, my legs were aching, my knees were stiff and painful, my whole body was fatigued and I felt exhausted. Bear in mind that I have not done any extra physical activity. I have not eaten food which is known to affect my digestion. The reason for this physical exhaustion and pain is the anxiety.
The anxiety has also caused my tolerance of other sensory inputs to be lower. Noises are crashing through my head, becoming amplified and distorted as they rattle around and combine in a messy uncomfortable hubbub. I notice every movement at the edges of my vision, resulting in more anxiety as I (over) react to shadows and reflections, flying bugs and wind-blown plants and trees.
I’m subconsciously stimming more; wringing and clenching my hands, stiffening my muscles, sucking my thumb and rubbing my thumbs. This can irritate my husband. He doesn’t like to see a grown woman sucking her thumb. It seems strange to him. He is the most supportive person I know, and he has listened and tried to understand when I’ve explained to him (poorly) why I do this. So instead of telling me to stop, he tries to hide it from his vision, turning his head slightly, or raising his own hands to block his view, or starting a conversation to get me to talk instead. I know he is trying to be supportive and not add to my anxiety, but my heightened state does not allow me to miss or ignore these strategies. It hurts and adds to my anxiety. It’s like a perpetual motion machine, causing more and more anxiety with each turn.
I am waiting for the time when I can collect my daughter from school. Or for the time when the phone call comes from school to tell me to collect her early. Either way I know I will feel better once she is with me. Once I know how her day has been. Once I know she is happy and calm and not upset and anxious.
I have written a to-do list. This helps me manage my anxiety. I hope in turn my physical symptoms will ease. I will go back to my pattern of resting in the day when needed and working when I’m able.
#autism #autistic #neurodiversity #family #autismmum #autisticmum #neurodiverse #diagnosis #autismandgirls #womenandautism #anxiety #chronicillness #chronicpain