Where does time vanish too; I can’t believe it is a year ago that I was going through my Autism Assessment, a whole year. I received my Diagnosis on May 5th 2022, although my autism report has the 10th of April written on it because my last appointment had to be postponed until after the Easter holidays. With the diagnosis came a better understanding of myself, it helped me to become less self-critical, after believing that I was failing at being human, that I was broken.
I didn’t know what masking was back then, let alone that it was something I have done daily without even realising it. Autistic people know that they are different from a very young age, our peers have an innate ability to detect that we are different from a young age, and we were often teased and bullied for those differences. So, we learn to create a mask, a neurotypical shield, in an effort to protect ourselves and to allow us to fit in. The thing is, wearing this mask day in and day out is draining, it uses up so much energy because we are on our guard constantly, constantly analysing every situation and conversation and watching out for mistakes. If their any mistakes we learn from them and adapt our mask accordingly.
It delays us from receiving a diagnosis of autism because we become expert maskers and manage to keep our true selves hidden. In public at least. We often lose our sense of identity along the way, we experience mental health problems because of it.
There are times when our mask comes off, we either have to be really comfortable and trusting of the individual we show our true selves to or we lose the ability to mask for certain periods of time.
Feeling ComfortableEnough Not To Mask
There are only a handful of people that know me without the mask, who I feel completely at ease with. My best friend I have known since playschool, she has been there through all the good times and all the bad, and vice versa. There is no judgement, I can talkto her with ease, never questioning whether I have made a mistake or not. I can be silly, I can Info dump and tell her how the leaves on the trees are the brightest green just after it rains and she doesn’t see it as stupid or me as weird. I can me. God, if you say something like that to some neurotypicals, they look at you like you are totally nuts.
People I am comfortable with I can talk fluidly, if I don’t my anxiety rises and I have to really think about and plan what I am going to say, so there are pauses where I need process the right phrases and words to use. Sometimes I clam up completely because the connection breaks between my thoughts and speech, other times I get so tongue-tied and talk fast. Every conversation has to analysed and planned, but people I feel comfortable with, I don’t have to do that.
Losing The Ability To Mask
There are some occasions when I lose the ability to mask, these are:
Illness
When I am unwell I may lose the ability to mask, masking uses a huge amount of energy and concentration; when I am poorly I don’t have enough spare energy to use for masking. I end up feeling vulnerable and self-consious without the mask, so I will avoid people when possible, mainly because it causes too much anxiety being around people when I am unwell.
Autistic Burnout (Walking under water)
There have been times throughout my life when I have experienced what I thought was a depression episode, but now I know better, I now realise it was Autistic Burnout, I had a really bad episode of Autistic Burnout which started in 2020 and lasted a good couple of years or more, During that time I was attending a Social Anxiety group online, diagnosed as having PTSD, had trauma therapy, autism traits picked up, a second lot of trauma therapy and an Autism Assessment and Diagnosis. I was exhausted, reacting to situations rather than acting and I was not coping too well, the mask had completely packed up and left home, hence being diagnosed autistic. It was an incredibly difficult time.
Being autistic and anxious, you get treated as though you are stupid and people tend not to hear you, which makes fighting for my daughter much harder than it should be. I know my daughter is autistic as well, and there are times that she really struggles, struggles with certain aspects at school, struggles with anxiety and obsessive-compulsive traits. Not feeling heard or taken seriously by the “professionals” is hurtful and draining, having to constantly fight to be heard and understood can cause exhastion and eventually autistic burnout if it keeps happening.
Burnout can be experienced at different intensities and can last different lengths of time, it can feel like you are trying to walk under water with heavy chains around your ankles, not getting anywhere fast.
When and Autistic person is experiencing Social Hangover, it can have an impact on their ability to mask. I have written a blog post on social hangover before, so I wont go into to much detail about it. Autistic people often need recovery days to recharge their social battery, when that is restored, their ability to mask returns to full capacity.
Exhaustion is another reason I may lose the ability to mask, I find groups of people and socialising really hard work when I am feeling drained, there is a kind of brain fog.
Periods, Pregnancy and Menopause
The hormones associated with periods, pregnancy and menopause can also affect an autistic persons ability to mask, it is around these times in a females life when they are most likely going to be diagnosed with Autism.
Research is only just beginning in the area of menopause, so there is very little information to be found about it. But, there are a huge amount of autistic women being diagnosed as autistic during the 40’s and 50’s, often this can be because they appear more autistic due to their ability to mask declining.
Visual Snow Syndrome (VSS) has been a part of my life for as long as I remember, as a kid it could be quite entertaining, watching the different patterns and ‘bubbles’ whizzing around in my field of vision. Unless I was really concentrating on it, I didn’t always notice it.
It wasn’t until I was in my 30’s that it became a big problem, I was trying different anti-depressants for Depression and Anxiety, and it was very much a trial and error thing as some made me feel really poorly and I had to stop taking it and move on to the next. One made me experience intense pins and needles in my head, which took weeks and weeks to disappear after I stopped taking them. I seem to be really sensitive to medication. It was around this time that I realised the visual snow had become more intense and more noticeable.
Where as before I only really noticed it when I focused on it, when I was in a dark room, or outside in the dark, now I was seeing it all the time. I could see it in daylight, especially when I was looking at something that had patterns or when I was looking at a blank coloured wall. The carpet in my doctors surgery was a nightmare and made me feel sick and I couldn’t look at the floor whenever I was there. I was also noticing symptoms I hadn’t noticed before, when I looked up at a blue or grey sky, I had these tiny white lights (bigger than the static) whizzing around and changing directions in my field of vision. It was terrifying to start with, but now I find it quite comforting and entertaining watching it.
I remember mentioning it to the optician when I went for an eye test, he had no idea what I was talking about, but did every test possible on my eyes. Everything came back normal, other than needing stronger glasses. As visual snow is a neurological condition rather than a eye problem, its hardly surprising the tests came back as normal.
It was a major trigger for my Anxiety, in the dark it was so difficult to see and I ended up needing to leave a light on. I was terrified I was going to lose my sight, at this time I didn’t know what it was, but when I put TV static in vision in the search bar only a few things popped up. Finally I had a name, but other than it being considered as a rare condition, not much was said about it, a few newspaper articles about people who were experiencing it and a research paper which were all quite negative.
It took 5 years or more after stopping the medication for the visual snow syndrome to return back to normal levels, but some of the other symptoms have stuck around.
Now when you put Visual Snow Syndrome into the search bar, a lot more information pops up, there seems to so much more known about it now than when I first googled it. That was only in a 8 year period, so I can only imagine what is known in another 8 years.
I could seek and official diagnosis, but it is still difficult to diagnose and as its no longer causing me to many problems I am not sure if it is worth pursuing.
Visual snow syndrome is a neurological condition; where static, much like the static on an old fashioned TV, fills the entire visual field.
Some people describe it as being able to see atoms whizzing about and bumping into each other.
The intensity and speed of the visual snow can be different from one person to the next, as can the colour, for me personally, the snow is the same colour as what I am looking at. Click here for the visual snow simulator. You can adjust the speed and intensity of the snow, and change to different conditions, such as night time and indoors.
Symptoms
There are several symptoms that can occur with visual snow, not everyone experiences all of them.
The Symptoms of Visual Snow are:
Static/Snow
Palinopsia – Trails after objects
Entoptic Phenomena – seeing images in eye, lights when eyes are closed.
Photophobia – sensitive to light
Nyctolopia – Difficulty seeing at night
Other symptoms that can be experienced along side visual snow:
Blue field entoptic phenomenon
Tinnitus
Visual Migraines
Headaches/Migraines
Vertigo or feeling dizzy
Insomnia
Anxiety and Depression
Depersonalisation
There are a couple of other symptoms I experience that aren’t normally listed, but from talking to others with visual snow, they have experienced it as well.
Pulsing vision – when I look at something it is as though my vision is pulsing or vibrating.
stobe lighting – sometimes when I have been out in the dark and then come into a brightly lit room, I get white lines in my vision that move. Sometimes it feels like stobe lighting.
lighting.pmA Connection to Autism
For a condition that is considered to be rare, there seems to be a high number of Autistic people and ADHD people who experience it. It is not surprising really, because Visual Snow is a neurological condition, Autism and ADHD are also neurological differences.
When I recieved my Autism diagnosis, I asked in a Autism Facebook support group whether anyone else experienced it, and it surprised me just how many people responded.
Now I realise what I was experiencing when I was trying different anti-depressants was Autistic Burnout rather than Depression, so medication may not of been right for me, but I had no way of knowing that back then. It wasn’t until I was 41 that I recieved my diagnosis.
A lot of Autistic children experience high levels of Anxiety, I certainly did and so does my child, trying to find things that can help can be difficult though because what works for Neurotypical children does not necessarily work for Autistic children. Which kind of makes sense when you think that we are “wired differently” or have different brain types.
Over the years I have tried many different tools and stratagies to help with my mental health, and now I am trying to find them for my daughter. Anxiety can be a hard one to manage, because quite a lot of it is sensory related, CBT and Counselling does not work for that, and it makes sense that CBT never solved my anxiety completely.
But, now that I am aware of just how much sensory sensitivities trigger my anxiety, when it kicks off I ask myself if there are any sensory triggers, and if there are I try to remove myself from it. If I can’t remove the trigger, being aware that its there and what is triggering my anxiety, helps me to hold it together as I know I am not actually in danger. If there are to many sensory triggers that doesn’t always work and I become completely overwhelmed by it, but I no longer beat myself up over it.
Exercise
Exercise or activity helps to burn up the adrenaline released into the body when highly anxious or during panic. Even if its only for 15 – 20 minutes. Exercise or Activities that you can use are:
Trampolining
Star Jumps
Running on the spot
Walking
Pacing
Dancing
There are obviously lots more you can use, if your child is anything like mine, going for a walk is not something she likes doing. So star jumps, jumping on the spot, trampolining and dancing work just as well. They work as a distraction as well as good for burning up adrenaline.
Worry Time
Allow some time at the end of the day to discuss any worrys and come up with solutions for them if possible, if not, write them on a piece of paper. At the end of Worry Time get your child to rip them up and put them in a bin.
I find the action of ripping them up and putting them in the rubbish helps to let the worry go, at least for a while. My daughter and I are visual learners so watching the action does help. For your child you may want to use a Worry Monster, where you place it in its mouth, for you to dispose of later. My child is a bit older now and has gone past the Worry Monster stage.
Plan Worry Time for the same time each day, just the thought of having that time for later can help to reduce the worry during the day, because you know you have a set time to think about it or to discuss it.
3 Good Things
Towards the end of the day ask your child to tell you 3 good things that happened in their day, it can be something they have done, something that made them laugh or smile, something they had seen.
It might be easier for them if you do it as well and join in, maybe take it in turns to do each one. If 3 is to many, try and do 2. It might help to write them down so you can look back through them, but its not a necessity. By talking about it and doing it, it does become easier to find 3 things.
Let The Thought Go
Find ways that involve letting thoughts or worries go. Its not always easy because of the way the autistic brain works.
Autistic people have an analytical brain, its great for learning and when we are focusing on a hobby or interest. But, when you are stuck in a negative cycle of thought, or focusing on a conversation you have just had and whether you made any social mistakes, it can lead to low mood or even depression. That cycle of thought can last for days, weeks or months where we keep going back to it. Because of this, CBT (where you focus on and challenge the thought) doesn’t always help, it involves focusing on the thought when really you want to accept it and then let it go to break that cycle.
Learning to break that cycle is important so it doesn’t impact on their mental health, its also exhausting.
There are other autistic thinking traits that can predispose us to mental health problems.
Writing things down in a journal can be beneficial, or writting it on paper and ripping it up.
Another way is to use distraction, focus the mind on something else each time it returns to the negative fault. It takes time and practice to eventually become a habit. One I am still working on myself.
Teach Self-care Activities
Learning self-care activities is vital, they help to recharge the social battery and can prevent Social Hangover and Autistic Burnout out.
If there are a lot of activities which involve socialising and going out the house, schedule in some Recovery Time. Time spent at home, doing there own thing; for me, it involves time spent alone, which is a rare occurance. I will often go for a walk in the woods to be alone and to be with nature, practicing photography.
Obviously a child can not be completely alone, but time doing their own thing with little interaction is beneficial for some.
If there are some self-care activities you can do together it can make it fun, for example have a pamper day with a foot spar and facial, even paint your nails.
Another one we enjoy is a DVD/Film day, where we watch some of our favourite films with popcorn and chocolate.
Self-care activities can include:
A Bubble Bath or Bath Bomb Bath
Reading
Pamper Day
Dvd Day
Exercise
Baking or Cooking
Healthy Eating
Recovery Time
A make over
Screentime
Screentime can be important for Autistic Children, especially after being social or a day at school. They need some chill time, some time to be themselves, and being online gives them the opportunity to do that. Not having to think too much and gives them something to focus on.
Use Their Imagination
Some Autistic people have very colourful and vivid imaginations, which can work against them mental health wise as they can imagine every possible outcome for an event or situation in a heartbeat, but tend to focus on worstead scenarios.
But, when used for something positive it can be beneficial. For instance, guided meditations, Guided Breathing exercises, visualisations, and creating stories. I have had guided meditations before, I was able to create the scene that was described in my mind in great detail, it was so vivid that it felt like I was there. It helped to direct my thoughts away from anxiety and worry.
With my daughter, we have made up stories together, some very silly and fun ones. It works as a distraction, and sometimes it helps to calm her enough to fall to sleep. It doesn’t always work though if her anxiety is really high. So it is an idea to have many different tools (activities) to try.
Plan The Day
Write out a Planner or Schedule each day together, depending on age, otherwise you could write it for your child. Knowing a set routine and where you are meant to be helps to reduce the amount of anxiety your Autistic child is experiencing each day.
If there is a change and it if possible give plenty of warning for it. A sudden change creates so much anxiety because we haven’t been able to prepare for it.
A lot of autistic people plan what they are going to say before saying it, autistic children are no different, it minimises mistakes and saying stupid things. Which we fear greatly because we are so aware of a social differences and difficulties.
If you want your child to do something or you want to go somewhere, try not to just drop it on them, give at least a few days warning if possible so they can prepare themselves for it.
I know its not always possible to prevent change or unexpected events, it just increases anxiety and uncertainty, and to many changes happening in one day or week can be overwhelming.
It is well known that most Mental Health Therapies are designed for Neurotypicals, and although they may have some success for autistic people, on the whole they don’t always work for us. Our brains are wired differently, so it makes sense that what works for neurotypicals won’t necessarily work for Autistic people.
Don’t you think its about time we had a Therapy designed to support the Mental Health of Autistic people (and neurodivergent people)?
I mean for a start, there is a lot more of us than outdated research into the condition portrayed. Autistic people are at a greater risk of developing a Mental Health Condition, Autistic people are at higher risk of suicide, and Autistic people are at higher risk of experiencing trauma.
Things are improving, but albeit, far to slowly in my opinion.
The Professionals need to start listening to the Autistic Community, ask us what we need and what helps. Ask us about our experiences with Mental Health. Far to many Autistic children and adults are being turned away from Mental Jealth Services.
My experiences as a child have definitely influenced the mum that I am now, there are only certain people I trust to look after my daughter without me present. My sisters, my mum, my partner, my friend, so I rarely go out without her.
Sleepovers and playdates are something that still worry me, I have to really trust and know the parents of my daughters friends well before allowing her to stay over. Trust is a huge thing for me, and once lost it is really difficult to get back.
That little girl in the photo had it tough at times, if only I had a time travelling machine, I would go back and scoop little me up and tell her she will be ok and give her a big hug.
The Broken Arm
I remember the day I broke my arm with, its a very clear memory, I am not sure how old I was, possibly 6 or 7. (The order of my memories are a bit muddled, but my understanding of time back then wasn’t great)
One of the people who Sexually Abused me was the cause of the broken arm. He was laying on the ground, threw me up in the air with his feet and didn’t bother to catch me. I landed on the ground with a thud and the result was the broken arm.
I remember it being the weirdest pain ever, I couldn’t decide if I wanted to laugh or cry, it was a bit like the pain from hitting your elbow. I don’t remember much about the hospital visit, but I remember going round his house with my dad afterwards to tell his family I had broken my arm.
The cast was rough and yellow in colour, it wasn’t the type you could easily write on. It wasn’t like the white casts. I had a white cast several years later when I fell out a wheelchair we were playing with and broke the other arm.
I think the one in the photo happened after the abuse had started, going by the photo it must of been, as I had short hair. So I must of been over 7.
The Short Hair
My mum told me that all of a sudden I had wanted my hair cut really short, it was shorter than this photo initially so this must of been taken a while after.
I remember wanting to look like a boy, In my 7 year old mind looking like a boy would make me invisible to the people hurting me. If I looked like like a boy they wouldn’t be interested, at least that was what I believed. But, it didn’t quite work out like that.
At one point I wouldn’t wear dresses or skirts other than my school uniform, but I must of been past that phase in this photo. But then, in dinosaur photo I wasn’t at home, I have a vague memory of visiting my aunts who lived in Purfleet and I think we visited this place while we were away. Perhaps I felt safe enough to wear a dress.
Autism…………..
As a child I was nieve, very trusting, and took everyone at their word. I certainly couldn’t read others intentions, which left me in a vulnerable position.
The need to fit in and to be liked made me into a people pleaser, It made me vulnerable to the actions of others, it lead to being Sexually Abused.
Although I had friends that I played with, I used to spend quite a lot of time alone as a child (out of choice), playing out in the garden with my toys, I was lucky to grow up with a large garden that backed onto fields and common land. My friends that lived in my road quickly out grew the activities that I used to enjoy, although I would join in with their games, playing alone was easier at times. There were no expectations, no judgement, no micky taking when you played alone,
The field and common land also became my garden, I would spend hours in the field with my net, bucket, notepad and pencil, documenting all the insects I found in the stream and ponds. Drawing them and writing notes, comparing them to one of the British wildlife books my nan and grandad had given me.
In the summer holidays I would write fact booklets about lions, tigers, elephants and hippos. I found it enjoyable.
I sometimes wonder how Autism wasn’t picked up much sooner, but I have to remember when I was growing up little was known about it, especially in girls.
But, when I see the photos of me lining up my toys, spending time on my own documenting insects and animals, or struggling to make friends, I think how visable the signs were that I was Autistic.
…… In A ClassroomEnvironment
Classrooms are naturally loud, bright, colourful, smelly and chaotic places. They are filled from top to bottom of sensory information, to much sensory information. The smell of cleaning products was often strong and overbearing, the noise was down to shouting, screaming and talkative children, colourful displays all over the walls and bright lights. Sensory overwhelm often triggered a great deal of anxiety.
In an effort to calm the chaos and gain some sense of control, I became a tatle tell, which made me unpopular with my classmates.
Hearing the teacher, unless they were shouting, was difficult when there was a lot of background noise. I couldn’t follow what they were saying or teaching some of the time. Which would cause me to panic as I would get into trouble for not doing the work.
The Teacher often shouted loudly, but I couldn’t tell if they were angry at me or someone else. I always ended up taking it personally.
I took the chance to escape as soon as I could, I either hid in the library or I would go to the medical room to lie down in one of the dark cubicles to calm down. There were days when I didn’t make it to school at all, more so when I experienced an episode of depression, which I now know to be Autistic Burnout.
………In the school Canteen
Oh, the canteen was a nightmare in the last school, about a million different smells that were nauseating. Food, Body Odor, Cleaning Products, Deodorant, Purfume, and Rubber Gloves, all mixing together.
Then there was the noise, a few hundred kids all talking, shouting or screaming. Add the flourescent lighting and it was sensory-toys hell. At the time, I other than the issue with the smell, I didn’t realise that sensory overwhelm was what was making me feel anxious and my heart to race. All I knew was that I felt pretty rubbish and would avoid going in there if I could. So, I took a packed lunch and ate outside if I ate at all.
Being Hypervigulant due to CPTSD heightens the senses, which does not help when you are sensory sensitive and have sensory processing disorder.
……….The News
Being highly empathic and sensitive, watching the news was not a good idea, I was terrified that the wars, the danger, or death would come close to me. Seeing or hearing about people being hurt upset me deeply, so the news was best avoided where possible.
I have to admit, I enjoy fidget toys just as much as my daughter does, they are great for stimming, distraction and relaxation.
They are a great stress reliever, very much needed with the current world climate, and I don’t just mean the weather.
My daughter and I, mainly my daughter, have added to our Fidget Toy collection. Her cousin has a much larger collection, but as we have only fairly recently started (couple of years) collecting, so haven’t done to badly.
These are so much fun, even getting them out of their packaging and trying to keep hold of them was entertaining and left my daughter in fits of giggles. If you click the name title it will take you to Smyths Toy Shop website, which is where we got them from and has more information. In fact, Smyths its where we got most of our fidget toys from.
The Water Snakes just slip through your hands, trying to catch them or keep hold of them is rather difficult and adds to the fun and keeps my child entertained for some time.
The Tap Tap Smart has 5 Modes of play, Raindrops, Match It! Copy That!, Eat Greens and Stop & Go. At the end of play of each game a score will flash across the screen.
Its a great fidget that helps with distraction, Cognitive Thinking, Test Focus, Memory and Hand Eye Co-ordination.
I have found it to be a stress reliever, because as you play the games speed up and require a lot of attention, which helps to take your mind off of your worries and thoughts.
The Tap Tap is a bit more expensive than other Fidget Toys at £9.99, but I feel it is well worth the money.
These come in all shapes and sizes, they remind me of the Bubble Wrap Packaging, as they make a popping sound when the bubbles are pressed. My daughter has numerous different ones of these, even a notebook with them on and a purse.
They can range in price, depending where you purchase them from, the rainbow ones were £2.00 from Smyths. We have also bought them from B & M before.
They are fun to use, especially when you race against others, but they can get a bit boring after a while.
Personally, I love the Water Bead Squish Mat, so much so I tried to get them in a different colour, but after 4 attempts of ordering and receiving the same colour I gave up lol, we are going to give the spares as Easter gifts to my daughters cousins as they love fidget toys too. A visit to the shop is very much needed to try and get a different colour, there are 4 options.
I love the feel of these, they aren’t as interactive as some of the other fidgets or sensory toys, but its kind of therapeutic pushing the beads through the plastic mat.
At £3.99 they aren’t very expensive and make a great gift for any Fidget Toy collectors out there.
The Pop and Spin is a Fidget Spinner and Poppet combined in to one. My daughter enjoys both and found this fun, obviously you can’t spin it and pop it at the same time.
I quite like fidget spinners myself, had quite a few of the old type ones in the past.
At £2.00, they aren’t to expensive to add to any Fidget Toy Box.
Squish Balls
There are some bad reviews written about the Squish Balls, which I have only just seen when looking for the link, but so far they have been ok for us. Although they get a little dusty, so far they haven’t split or burst. My daughter hasn’t exactly been gentle with them since we got them this week.
Although, it says 3+, maybe keep an eye on younger children using them because of the reviews. My daughter is 9.
They are the equivalent of the old stress balls, I think the are filled with slime, but I am not 100% on that.
At £1.99 they aren’t to expensive, they also come in four colours, Pink, Blue, yellow and green. I have to admit, I have quite enjoyed using the Squish Balls, they are a great stress reliever and good for stimming.
I really like the Fidget Toys in this kit, the Poppet is missing from the photo, but we recieved a green one in the box.
My favourite in this is is the ball, where you have to match up the coloured balls to the coloured holes. I don’t recommend dropping it on a hard surface, which is what my daughter did, as it all came apart. But, it was easy enough to put back together, although a little fiddly.
I also like the yellow and blue fidgets in the photo, they have a marble inside which you move up and down the net tube.
At £9.99 I think this box is quite good value for money, you get 8 different fidget toys. I have been tempted to go for the bigger box which is £19.99. But, that will have to wait for a couple months.
A fantastic fidget toy for stimming and sensory play, I really like these as you can use them in so many different ways. They are also great for relieving writers cramp when rolled in the hand.
Mine is black, my daughters is purple, I believe there are another 2 colours available and at £2.99 these are a real bargain in my opinion.
Th Fidget Cube is another favourite of ours, there are different activities on each side. Some click and some roll. Again, my daughter has the purple, I have the green and there are a couple more colours available.
A great distraction toy, and at £3.99 you can’t really go wrong in adding this to your Fidget Toy collection.
I have quite enjoyed writting this one, just quick reviews about the different fidget toys we own, the opinions in this blog post are my own. Supervision will be needed when used by children due to choking hazards.
I was always a shy and quiet child, even before the trauma happened when I was 7. I know this because in later years (after I had left school) my mum was a cleaner for the first school I attended and knew the teachers who were my class teachers. In fact she still talks to two of the staff. I also volunteered to help with the children in my late teens. Some of the same teachers were still there. I loved that role, listening to the children read, planning activities and helping to create displays.
As a child, I was afraid of getting in to trouble, so I learned all the rules and stuck to them rigidly, I never shared my opinions and tried my hardest not to make any mistakes. I guess you could say I was “well behaved”, but it was through fear and that is exhausting and detrimental to a child’s wellbeing.
Sports day was one of the times that I really struggled, I would refuse to participate, so one year my teacher held my hand and ran with me just so I would join in. I was rubbish at sport, had difficulty with coordination, I was rarely chosen for teams.
After the age of 7 I became painfully shy and quiet, talking was often kept to a minimum, the Men that abused me made sure I didn’t speak. One told me no one would like me or believe me if I told and I believed them and took them to their word so I didn’t tell anyone for some time. After a while I did tell a school friend, I remember sitting at the end of the playground with a friend playing with acorns and it spilled out. She kept my secret quiet and I didn’t tell anyone else until I was 13/14.
Moving up schools I found it extremely difficult to make new friends, I relied heavily on the friends I moved up with, but they quickly made new friends and I was alone a lot of the time. I was still painfully quiet, I found it really hard talking to new people.
No one seemed to realise I was struggling, not the teachers, not my family and not my friends. Accademically I was doing great, socially and emotionally, not so good. It wasn’t until year 6 and a child left that I fell into a friendship with a girl in my class.
Half way through year 7 that friend left, I ended up spending a lot of time alone, I signed up to do the recycling bins in the classrooms. It meant I didn’t have to go out at break times, where it was often loud and chaotic. I stopped going into the lunch hall altogether, I struggled with the noise and smell at the best of times, but without someone to go with I couldn’t cope with it all.
When I was in year 8 my teacher noticed I wasn’t eating at lunch, a dinner lady reported it to him, he also noticed how anxious and unhappy I always was and told my parents. He asked me what was wrong, but I couldn’t find the words to explain. It was the first time anyone had noticed I was finding school difficult, anyone had noticed me. I spent so much time being invisible, I was feeling lonely, and masking heavily. I ended up going to the drs and being put on Prozac, but they made me ill so I wasn’t on them long. Looking back and knowing what I know now, I believe that was the first episode of autistic burnout I experienced, although it was seen and diagnosed as depression by my GP. I started taking time out of school at this point.
The transition to the last school did not go well at all, it was huge, it was busy, it was loud, it was chaotic and I kept getting lost. I have always struggled with Smell and Loud Sounds, I never knew why or to what extent until I was diagnosed. When I was diagnosed it all made sense. All I knew as a kid was that I always felt anxious, constantly, in the school environment. Some of which I now realise was triggered by sensory sensitivities and hypervigilance.
I had one friend in my class as the rest were in other classes. Bullying started, so I avoided my tutor group when possible, also I did not like my tutor. She was loud, abrubt and strict. I missed more and more lessons, hiding out in the library alone or feining illness and going to the medical room. I lived in the medical room during those years, it was a quiet safe place, and the school nurse became the one person I could talk too.
It was in the first year, year 9, when my friend convinced me to tell the school nurse what had happened to me. She came with me. I told the nurse everything, but because I couldn’t show the emotion they expected, and my friend was upset and in tears over things in her life so they didn’t hear me. Because I didnt cry the nurse didn’t realise the seriousness what I was saying was. No one heard me.
It wasn’t until some months later that I was heard, at some point the police were called, but I froze, I didn’t know them from adam and couldn’t talk to them. They asked lots of questions I didn’t know how to answer, if they went to a safe topic I could answer, but the serious stuff I couldn’t. I had kept everything quiet for so long, I didnt know how to talk about it. So, it didn’t really go anywhere.
The only people I really spoke too was the school nurse, the Education Welfare Officer, and a few close friends. At some point the EWO left to have a baby and replaced by someone else, so that was one less person I could talk to.
I was really struggling with school, taking so much time off and avoiding certain lessons. I stopped going to PE, RE, Tutor group, and PSE altogether, I missed a huge amount of Biology, Physics and Chemistry. But, other than writing in my school reports that I wouldn’t say a word most of the time, that I was a loner, anxious and unhappy, no one helped me cope with school. I muddled through until I left, I left with low grades, low self-esteem and believing I was thick because no one heard me.
By being so open about my life I am aware that it gives others the right to judge and ridicule me, but the reason I do it is because being silent means that people don’t talk about the important stuff, and abusers get away with it and feel safe, silence allows it to continue. Being an abuse victim is a lonely place for some people. Often it is the victim who feels shame and at fault, which couldn’t be further from the truth. By talking about it I hope to make others feel less alone.
Being heard as an Autistic person is hard, even when you are verbal. Often people see the Anxiety and that’s all they see, they assume you are stupid. As a child, I really struggled to explain what it was I was feeling and experiencing, especially when you fully didn’t understand why you were feeling so anxious. Autistic people experience intense emotions, but I was also battling PTSD as well, which I didnt realise until I was 40 and a therapist diagnosed it. I had been battling with it since childhood, but no one had known, not even me.
I needed help at school, but despite the signs teachers didn’t help me, they didn’t hear me even when I did speak. I was crying out for help in my own way but because it was in ways that were not expected no one helped me.
Which is why I shout my loudest for my daughter, but despite shouting and speaking up, her teachers don’t hear me. They don’t see her anxiety or her struggles.
My daughter has been really struggling with Worry and Anxiety, which has been getting worse over the last few years. Normally it comes out at bedtime when all is quiet and there are little to no distractions.
Every night she asks me whether she is going to die or when her dad and I are going to die, I have been honest with her and explained that no one knows when they are going to die unless they have a terminal illness. But, she is young, and that it is very unlikely that it will happen to her anytime soon, and that her dad and I are currently in fairly good health. I can’t lie to her and say it won’t happen, that would be much worse, and she wouldn’t be able to trust me when she works it out for herself. There are some nights where she is scared to go to sleep incase she doesn’t wake up in the morning.
I do my best to reasure her, but some days that isn’t enough, and she has to work through things. When there are changes at school it completely throws her, if I know before they happen, then I can help her to build up to it. That is not likely to happen.
So, I have started to create a “Calming Toolkit, I felt it needed a positive name rather than calling it a Panic Toolkit or an Anxiety Toolkit, so I can tell her to get a tool from her calming toolkit when she needs it. It has a more positive tone to it.
Meditation and Affirmation Cards
These cards are really good, some have facts that explain what is going on in the body and brain when you are feeling anxious, they also have some that have different breathing techniques, grounding techniques, or activities that can be made to help. Spiffy has a set of ‘Remindfuls’ cards for children, which are affirmation cards.
My daughter likes scents and will seek certain smells out, but she does find some scents too strong and I can’t tolerate strong smells, so essential oils and perfume are out of the question. But, there are some really nice, lightly fragranced candles that we are able to use and some Wax Melts that is not too strong. I find incense sticks are too strong for me, it needs to be something we can both cope with.
Fidget Toys
We have a rather large collection of fidget toys between us, so we have added them all to the Calming Toolkit, we both have our favourites. Mine is the Water Bead Mat and the Fidget Cube, whereas my daughter’s is the marble toy (which looks like a finger trap) which is blue and yellow in the last picture, she also likes the Water Bead Mat, so I am going to order another one when I can.
A nice notebook and pen are a must, I feel it is great for writing things down to get them out of your head and you can return to them the next day. In the light of day, things don’t always seem as bad as they did the night before. I am a bit of a stationery collector and have a preferred type of pen, the Pilot Frixon pens are really smooth to write with and the ink can also be rubbed out if a mistake is made.
Playdoh – Kinnetic Sand – Slime
Playing with dough, slime or kinetic send can be therapeutic and a great distraction, probably not an ideal activity to play in bed with, but when my child can’t sleep sometimes it helps to leave the bedroom and do an activity or read a book until tiredness takes over. laying in bed worrying just fans the anxiety flames.
A Book
Having a book to hand can be helpful and a great distraction, one they can read themselves or one that you can read to them, my daughter still enjoys having a book read to her at night. As long as it is lighthearted, humourous, or even a fantasy-type book anything that will take their mind away from the worry.
It may be useful to have some background noise or music, silence can be deafening and fuel a worried mind. We quite enjoy listening to the rain or running water which we play on my phone through Youtube. Guided meditations are also really good, Autistic children (and adults) have vivid imaginations and may find this therapeutic.
Soft Toys
A soft toy to cuddle is helpful, my daughter has a couple of favourites, including her squashmallow which is so soft and smooth to the touch. They bring her a lot of comfort and sometimes talking to them about the things she is worried about is easier than telling me directly.
Gemstones
Depending on the age of the child, gemstones may be an option. I know not everyone believes that they will be helpful due to their rumored energy qualities, but my daughter loves holding them, they are cold and have different textures. They can be an added fidget; my daughter likes the smoothness of some of them and running them through her fingers.
Worksheets
These were given to me for Christmas, but they are great for the Calming Toolbox, they help to process thoughts and worries. These are from a company called Spiffy, I have some others on order that are more suitable for younger children. Sugar and Sloth also have some great products to help with Anxiety.
Long before I was diagnosed with Autism I was aware of the problems that I experienced with pain and tension, so much so, my dentist referred me to the hospital for tension in my jaw and for grinding and clenching my teeth. I was breaking nightguards every two to three months.
In the end, I was put on Amitriptyline and then Mirtazipine to help reduce the tension in my jaw, neck, and shoulders, and in turn the pain. It has helped but it never fully solved the problem, I am only breaking nightguards every one to one and a half years now, much to the delight of my dentist. Nightguards are not cheap, even on the NHS.
Since diagnosis and the development of new symptoms, I have spent quite a bit of time looking into why I experience so much pain and tension within my body and a few interesting topics come up.
It’s a Sensory Thing
Sensory processing differences often come down to seven senses – sight, smell, touch, hearing, taste, proprioception, and vestibular – but there is another sense, an eighth sense, which is called Interoception.
I am beginning to realise that I cannot tell when my body is tensing up. until it is much too late and I experience a lot of pain. For many years now, when I have had a cough, I have had a shooting sharp pain that travels through my neck and up the back of my head to my forehead. It feels like my head has a tight band all around it and then I feel as though I am going to pass out. It terrifies me at times because the pain is unbearable; but it only lasts until the cough stops, so a matter of 10 – 15 seconds, unless I am having a coughing fit. The muscles in my neck tense so much, I swear it reduces my circulation, hence feeling like I am going to pass out.
The thing is because I am not aware that my muscles are beginning to tense up, which happens a lot of the time, I am now having to regularly remind myself to try and loosen my muscles. Which doesn’t happen easily, its something I have always found hard to do.
I remember being in the second school doing PE, the teacher would make us lie on the hall floor and go around raising and letting go of our right or left arms to see if we were “relaxed enough”, and then we could leave to go change back into uniform. Lets just say it was a rather stressful activity for me and I was always the last person to leave the hall because I could not let go of the tension.
Right now, I am trying to learn to be more aware of my muscles before it reaches the point where it causes excrutiating pain, as it is my arms and legs are always in pain and feeling weak where I tense them up so much. I am trying to learn to relax.
I have been practicing muscle relaxation exercises, by actively tensing my muscles and releasing them at certain periods throughout the day. It hasn’t become a habit yet, I have to keep reminding myself to do it, but there are lots of times I still forget.
My partner and step-kids would laugh at me and tease me by poking me in the shoulders and legs, we could never understand why a light poke would hurt so much, far more than the pressure that was applied warranted, and would leave a massive red mark. I get it now, when I was diagnosed with Autism, I realised I also had Sensory Processing Disorder, which causes me to experience pain at a higher intensity than I should.
It does cause its problems, Paramedics and Medical Staff ask you to gauge your pain on a scale between 1 and 10, I have no idea how to answer that half the time as I am not sure. I was taken to hospital by ambulance for a Gallstone Attack (I didn’t know that was what it was at the time), the pain was unbearable, it was worse the worst pain I have ever experienced so could only rate it as a 10. But, when I was in labour with my daughter, the contraction pain was really low, but I had a pain in my leg that was about an 8 and worse than the contractions themselves. Things that should hurt, often don’t and things that shouldn’t hurt, hurt a great deal. It means I can’t always trust my own judgement, and I can’t always tell when something is serious and when something isn’t.
Conclusion
Believe me when I say that can be quite scary at times and can result in experiencing Health Anxiety. I saw my dad die from a heart attack when I was 17, I remember the look of pain on his face, and pain has become an anxiety a massive trigger for my anxiety in the past.
I have noticed my daughter is experiencing pain in a similar way to me, she hates having her hair brushed as it hurts to much, and some days it will even trigger a stomach migraine. I have to be so careful brushing her hair in the mornings, there are only a few hairbands that she can tolerate in her hair and the only style she can put up with is a normal ponytail for school the rest of the time she prefers to wear it down.
She needs a lot of reassurance when she falls and hurts herself, she panics about the prospect of experiencing pain, she is terrified of dogs in case they jump up and their claws dig into her leg as it hurts so much. She avoids them at all costs and we have to walk in silence past my neighbours house in case their dog hears us and comes running out. She stopped going to a friends house as they got a new dog and she couldn’t cope with it. The only dog she can cope with is the therapy dog that visits school as she knows it is well trained; other than that her phobia of dogs is starting to take over in case they hurt her.
As a child, I remember being called a drama queen on many occasions, when I was ill or when I had hurt myself. I wasn’t, it was just I experienced pain and illness differently. Now that I can recognise that within myself, I can support my child differently to how I was treated when I was ill or hurt. I understand what it is like.
It is funny how many things have started to make sense since I was diagnosed as Autistic, I am slowly learning what Autism means for me and for my daughter.
Autistic children know they are different from a very young age, they may not know why they are different, they just feel it from within.
Our peers also know we are different from a very young age, they may not know what the cause of those differences are, but they certainly let us know that those differences exist loud and clear.
School can be difficult to navigate for an Autistic child, not only do they have the curriculum to learn, they have neurotypical social skills to learn, to enable them to fit in with their peers. I mean its kind of expected isn’t it, what with us being the minority, and all that.
When I was growing up I didn’t know I was Autistic, I didn’t learn that fact until much much later, but the difficulties were still there. Recieving my diagnosis means I now understand why I struggled so badly at school.
I can’t blame it all on the Autism, some of it was down to experience sexual abuse at a young age, resulting in PTSD, I didn’t know I had PTSD until much later either. Experiencing hypervigilance on top of Sensory Processing Disorder added its own set of problems.
First School
I was lucky in the fact that I attended a small village school, I have some fond memories of that time, as well as some difficult ones. There was one class per year and the class sizes were manageable.
I had some “ready made” friends, the children who lived down the same road as me and I had known since Playschool, I also had a few other friends. The first few years of school were easier, but, the last couple of years were more difficult, the friendship dynamics start to change at that age. Especially with the girls, the roles change and it becomes more complex, lots of fall outs and bickering. In a way, it was easier to play with the Boys, who were more laid back.
I have this memory of being taken to the Headteachers office with a several other children, the headteacher was asking us maths questions, questions I was able to answer. It got to my friends turn, but she appeared to struggling with it and I butted in and answered the question over her. I got a telling off in front of everyone in the room, I remember feeling awful and embarrassed, and I never answered or spoke in front of groups of people again. I also developed a fear for maths. (I was a goody two shoes growing up, hated getting in trouble or standing out, and I was very much a people pleaser)
I found that I was better at communicating with people who were much older than me, or children that were much younger than me, there appeared to be less judgement with these age groups. Fitting in with peers and keeping up with them was difficult, I always felt like I was different and that I was the odd one out. It took a huge amount of effort and energy to engage in the activities that my friends seemed to find easy, it was like they had a hidden instruction guide that I had been denied access to.
Anxiety and worrying were very much a part of my life at this time, although it was much less severe than it became in later years, I mean I was “shy and quiet” but I had more confidence then. I remember singing in the Christmas play and speaking in front of the assembly on occasions, I point blank refused to do this in the next school.
Another memory I have is at sports day, I stood at the start line frozen to the spot, until a teacher came over and took hold of my hand and ran with me.
I hated the mail plane which seemed to fly over my house most nights when I was a young child, it was so loud and would terrify me as I had images in my mind of it crashing into the house, I would jump out of bed and run down the stairs with my hands over my ears in a panic until I found one of my parents of siblings.
Second School
By the time I started middle school, things really changed, my confidence and self-esteem had taken a huge hit. It was a larger school, there were four classes per year and the class sizes were bigger. I was split up from some of my friends, the children I relied heavily on (which I now realise was probably hard work for them).
I struggled, I found it hard to make new friends, I became even quieter and more withdrawn. I found the class dynamics hard to adjust to, I got lost many times, and it was louder, busier, and I spent most of my time feeling awkward and out of place.
It wasn’t until half way through the second year there, one of the girls lost her best friend as they had moved away and although she had other friends, we kind of “fell” in to a friendship. We would pair up in lessons and play together at lunch, and she helped by introducing me to her friends. But, then in the third year she moved away, and I felt alone once more.
I stopped participating in PE, I had hurt my back, but not as badly as I was making out. I used it as an excuse to get out of PE and sports days. In fact, anything that put me in the spotlight or would make me standout, I avoided participating in.
I volunteered for sorting out the recycling which was collected by each class, I had to go around the school during lunchtime collecting all the bags and take them into the library. It meant I could avoid the playground and the school hall which were full of noise and kids rushing around.
I stopped going into the hall for lunch, the dinner ladies were concerned as I wouldn’t eat my lunch and reported it to my teacher. I was really unhappy by this point and painfully quiet. I ended up visiting the doctor and being prescribed anti-depressants, I was only about 11 or 12. I didn’t stay on them long, I hated taking them and it was just one more thing that made me different from my peers.
Maybe if I had a learning difficulty, I would have had some extra support; the struggles I was experiening were not that obvious. Not being able to put into words what was wrong when the teachers asked, did not help, nor did the fact that I was painfully quiet. It was just put down to extreme shyness..
When I was growing up, I lived near a company that would set its alarms off at random times, I hated it. They were so loud and the suddenness of it would cause me to panic. Eventually, they changed the system they used, and would only set it off on the same day at the same time every week. Which I got used too and was able to cope with, knowing when it was going to happen helped the anxiety over it disappear.
Third School
Experiencing constant anxiety every day is horrible, but that is how I felt every day I was at school, I would experience episodes of depression and burnout, requiring days off of school.
The last school was massive, I have no idea how many classes there were per year, but it was a lot. I kept getting lost. There were even more children to get used too, new teachers to get to know, and I did not cope with it at all. Most of the children I knew were in different classes, I had one friend in my class, but she had moved on and made lots of friends. I had relied heavily on her for years and the friendship broke down for a while.
The first year I was there, I had a couple of cousins in the years above who I spent time with, but after that year they left. I was constantly anxious, and struggled with many aspects of school, but I got through somehow.
I spent most of my time looking down, using my hair as a kind of shield, I stopped going to tutor group after a while. I found it extremely difficult to talk to my tutor and I didn’t really know how to put into words what was going on anyway. I faked being ill and took a lot of time off, I asked to leave the classroom either with trips to the toilet or medical room, or hiding out in the library. The quietest places in the school. Obviously my learning suffered as I was missing large amounts of information. During lunch and break, I would stay in the corridors alone.
The one person I was comfortable talking to was the school nurse, probably because of the amount of time I would spend in the medical room, I learned to trust her. It was her that I first told the trauma I had experienced as a young child to. To begin with, because I showed no emotion when talking about it, she didn’t realise the seriousness of it or the impact it was having on my life.
Eventually a couple of girls started to talk to me and I became friends with them, they were in some of my lessons, but most of my lessons I was alone. Until the second year there anyway, my best friend ended up in some of my lessons then, a friend I had known since playschool. In fact we are still friends now.
When I was in class, it was often chaotic and I struggled to concentrate and take any of it in. I was quite talented at managing to make myself disappear in to the background and go unnoticed. Classes wore me out, I often felt exhausted and had frequent episodes of depression. Now, I know those episodes were likely to be Autistic Burnout. I have recently had a really bad episode of Burnout, and it has taken months to make any improvements.
Don’t get me wrong, there was some great times too, but it was so difficult to navigate school life and it certainly wasn’t the best years of my life. My Anxiety would not allow me to have the experiences my peers were having.
When there is a lot of noise and chatter around me, I struggle to focus on and hear the person that is talking to me difficult, so I couldn’t always take in what the teacher was saying. I didn’t have the courage to ask them to repeat what was said.
One thing I really regret is not being able to talk in class, if only I hadn’t spent so much energy in avoiding activities and actually took part in them, things may have been different sooner. Teachers let me get away with not attending certain lessons, I was pretty persuasive and stubborn, if only I had allowed myself the same opportunities as my peers. But, fear ruled my life and my ability to do certain things.
It wasn’t that I didn’t want to talk, engage or participate, it was more the fact I didn’t know how. I was scared of making a mistake or saying the wrong thing and most of the time it was a lot easier not too. When I am with people I feel comfortable with, I don’t have any trouble talking, although I still overanalyse conversations. When its with people I don’t know well, I struggle to talk, its as though there is a mental block. The connection between my thoughts and mouth breaks, I know what I want to say, but I just can’t get the words out. When I was young, it was easier not to bother, now I try harder to, but I end up stumbling over my words or sounding “weird.”
During lessons if I wasn’t allowed to leave the classroom, I would shutdown and escape using my imagination only being brought out of it by the ring of the bell signalling the end of lesson.
I really struggled with Maths, I was in the bottom set, yet it was my favourite lesson because it was a lot smaller in size than the others. They had planned on moving me up to the next set, but I was having none of it. There was a boy in my class who I got on well with, we had a great laugh and I was able to talk to him no problem at all. I found out a few years ago, that he was diagnosed with Asperger’s after leaving school. In fact several of my friends are neuro-diverse, from Dyslexia, Dyspraxia, Autism and ADHD.
Now
This last year has been a huge learning curve for me, since Autism was suggested, I have learned so much about myself. I have stopped feeling like a broken Neurotypical and “weird”, I am learning how to accept myself for who I am. I have started to make allowances and learning coping strategies. Even if they decide not to give me an official diagnosis, looking at things through the Autism lens has helped with my mental health and self-worth.
I left school believing I was thick, I had very low grades and believed I had no chance in pursuing the career I dreamed of. A few years ago, I was told that If I wanted to find a job I would have to improve my Maths and English grades (I haven’t worked since my daughter was born). So I attended a centre for adults to gain those qualifications, as it turned out, I wasn’t thick at all. I just had a lot of missing information, once I filled in those gaps, I gained those qualifications rather quickly. I have gone on to achieve further qualifications online.
Also, I have found a passion for writing, the written word is so much easier than talking at times. I rely on email for getting my point across and explaining what I mean. I enjoy spending time with the friends I have and I do enjoy connecting with people, but it wears me out and I have had to learn what my limits are and make allowances. Some people I can talk to with no issues at all, others it takes a huge amount of effort and putting into words what i want to say is hard, the connection between my thoughts and my mouth seems to break. One of the most annoying traits I have is oversharing, the need to explain things, I can’t always do that with speech because of the mental block I experience when highly anxious. Another time when I depend on the written word.
My Daughter is showing some of the same traits, whether its Autism, Sensory, or learned behaviour from me, I am unsure. But, for several months the sense of guilt I have felt has been huge. I don’t want her to struggle the way I did, but like I said in a previous Blog Post, She has something I didn’t have. She has someone who totally gets it and someone who can help her achieve the experiences I missed out on, she has me.
Its important to remember and notice the quiet kids, the ones who try so hard to disappear, If only someone had delved a little deeper while I was at school Autism may have been picked up sooner. Its no ones fault though, awareness for the female presentation of Autism was slim on the ground. Unless a child demonstrated the Stereotypical traits of Autism, it was rarely picked up.
Today, I was chatting to one of the mums while standing on the quieter side of the path, my daughter came running out of the school gate talking very loudly about her school day. The other kids were just as loud and as enthusiastic/excited about school finishing and the prospect of the weekend, the parents were all laughing and chatting away. Me ……………………….. I could feel my anxiety rising, I felt “awkward” (the word my daughter uses to describe how she feels at the school gate some days), and I could not concentrate on what was being said to me, there was just too many people talking at me and around me. My head felt like it was under water. My coping skills slipped away and its at times like these that it shows that I am different. – When there is to much going on around me, to much noise and chatter, I am unable to follow or focus on what the person talking to me is saying. In a classroom environment it made learning hard and I made every excuse possible in the last school to leave the classroom, even if it was only for a few minutes.
Autism Parenting 