…… But they are fine at school!!!

A child can be doing great academically, they can appear calm, quiet, well-behaved, and compliant, they can have friends, but they can still be Autistic and they can still be struggling. They just tend to internalise their panic and distress.

That child still requires the same amount of support as the child who is experiencing meltdowns, who is struggling academically and acting out with challenging behaviour.

While the child who is visibly distressed is instantly given support and removed from the situation or trigger that is causing the meltdown, the quiet, compliant and well-behaved child misses out on the support, despite having the same difficulties and possible diagnosis. They often remain hidden, they easily slip under the teacher’s radar, and they go unnoticed. By the time it becomes apparent that they need help, it’s too late, they are burnt-out, skipping school, possibly self-harming and self-medicating, and believing they are broken and a failure.

At the start, the signs they are struggling might be subtle, from a very young age autistic children learn how to mask. They hide their differences so that they can fit in, appear normal, and to be liked. So, it’s important for teachers to listen to the parent and take what they say seriously, they know their child best after all. They shouldn’t have to fight, fight, fight to get anyone to listen and to be heard, to get their child the support they need.

The other thing to remember is where there is an autistic child, often there is an autistic parent (it’s not always the case). They just may not be aware of it yet.

Autistic children often come from a neurodiverse family, the traits are often dismissed as normal because so many in the family have the same or similar traits. The fact that most members of my family are unable to use a knife and fork became a family joke, it was only when I became aware that I could be Autistic at 40, that it made sense. Only one member of my family has been diagnosed as having dyspraxia, but it is possible that others probably could be too. My nephew was diagnosed as having Aspergers when he was a child, I received my diagnosis this year at the age of 41.

Perfectionist

A quiet autistic child tries hard to be perfect, perfect at everything they do, and this puts a huge amount of pressure on their shoulders.

When they can’t be perfect, when they get something wrong or believe they will get it wrong or make a mistake, they are devastated and become highly anxious.

They may try to avoid taking part in a class activity through fear of getting it wrong, so that others can not witness it or make fun of them for it. Feeling different from peers can have a huge impact on a child and their Self-Esteem, and may influence the decisions that they make. Worry and anxious thoughts can disturb their sleep, and cause physical problems such as stomach migraines, headaches and upset tummies.

My child came home upset one day because her name had been moved for talking, being told off or getting in trouble hurts her deeply. She tries so hard to do what is expected of her and to be well-behaved, that when she makes a mistake or is unable to do something it causes distress.

But, she doesn’t show it at school, she holds it in until we are walking away from school, alone. Then, the tears will come and the worry shows, we talk it through to make sense of it, to process it and try to let it go.

If she doesn’t show it at school, then the teacher has no idea there is a problem, I try to encourage her to tell her teacher when she is worried at school, but she doesn’t feel comfortable in doing so.

A sudden change in routine can completely throw an autistic child, and they may struggle with the activities they normally find easy.

My daughter doesn’t have a diagnosis yet, but the signs are there, I have had my suspicions for a while. But, proving it is the difficulty when it is not witnessed at school.

Communication is not a strong point of mine, I get anxious and at times struggle to say what I mean so that I am taken seriously and my child’s worries and struggles are taken seriously. In the first couple of years it was really difficult and I asked for help, both with communication and support with school and support for my child, from a local service, but it didn’t really work out and they signed us off as soon as they could. I have since tried again with the same service, but they just aren’t interested, yet they are meant to be family workers. One of the family workers blamed me for my childs anxiety, that because I have anxiety I am to blame for my daughters, and apparently that is how they all view it. I am not sure they understand how autistic anxiety works. In all honesty I had been doing really well with my anxiety and I never allow my daughter to witness it.

Recently it has become really hard to communicate with school again, after the family workers comment I lost all confidence and I am really struggling to do the school run.

I rely heavily on email to explain my child’s worries and struggles. It makes me feel sad, because it makes me feel as though I am failing my child due to the fact I find it so hard to communicate and can’t get her the support she needs. I sometimes wonder if some of the staff avoid me because I find talking so difficult, but then again maybe that is just me overthinking things. Differences in communication styles can cause misunderstandings.

Mother hen

Some autistic children find it easier to be social with and make conversation with children who are younger than them or children and adults that are older than them, than they do their peers.

Autistic children can be highly empathic, they feel emotions at such a high intensity that managing them is difficult. They can also be sensory sensitive to others emotions, when they see someone else in distress it can physically hurt. They may go out of their way to cheer that person/child up through kindness, humour or support.

They may take younger or vulnerable children under their wing, making sure that they aren’t left out and have someone to play with.

Sensory Sensitive

Autistic children can be highly sensitive to their surroundings, to the needs of others and to things they see. Watching the news can be distressing and cause anxiety, especially if someone is being hurt or there is talk of war. Watching certain programmes can make them cry.

Loud noises, such as fire alarms and hand dryers, can be problematic, not only due to how loud they are, but due to the suddenness as well.

My daughter was terrified of the hand driers in public toilets, so much so she would avoid going in them when possible and refuses to use the hand driers even now. I always had to carry a bag with a tea towel in when she was tiny. She is getting better with the school fire alarm, as long as she has plenty of warning.

My daughter hates wearing jeans, can’t stand the feel of the denim against her skin. She lives in skirts, dresses and leggings. The number of different clothing items we have tried out and which have been discarded to never be worn again. Autistic children can be really particular in what they wear, in some cases, wearing the same items of clothing over and over again, because they know how they feel and feel comfortable in them.

Hair can be another problematic issue, hair brushing can tug, pull and hurt. Long hair, in particular, I have to be so careful when brushing my daughter’s hair. Even the lightest pull can cause pain and has in the past triggered a stomach migraine, which in turn causes her to throw up. Which isn’t ideal when you have to leave home on time to walk to school. When it hurts, she will tap her fingers on the side of her head, she says it helps her manage the pain. A hair cut has triggered a stomach migraine, I believe it is a sensory thing. She has to wear her hair up for school; we have gone through so many different types of hairbands, to find ones that don’t pull on her head or hurt as much when they are being taken out.

Another thing that has triggered a stomach migraine is when she fell over and scrapped her knee, she ended up with stomach pain which didn’t subside until she had been sick.

She loves the washing labels in clothes, she often plays with them when she is worried or anxious, because they feel silky to touch they bring her comfort. Many times she has cut them out of her clothes to carry around in her pocket.

Some children may appear to be a “tattle tale”, but it can be in an attempt to have some control over the environment they are in, bringing a bit of calm to the chaos of a noisy classroom rather than trying to get someone in trouble.

Teachers Personality and Expectations

At the start of the school year, more so during the primary years, you have a change of teacher. You have to learn their personality and what their expectations are as well as the school curriculum.

Are they patient, are they friendly, or are they the type of teacher who shouts. My daughter finds shouty teachers difficult to cope with, the shouting hurts her ears and she loses trust in them quite quickly.

There was a new teacher at her school at the begining of the school year, luckily not her class teacher, but she is spending a few lessons a week with her. She comes out of school and tells me that this teacher is so rude, she does not like the way she talks to the kids, she rushes them to finish whatever activity they are doing and she shouts. Other children that are in this teachers class seem to like her and find her kind. I am wondering if my daughter is struggling to understand the tone and loudness of the teachers voice, she is quite abrupt and loud in her communication and tries to hurry the kids along apparently. One of the mums told me.

Early reader

An interest in the alphabet and words, and noticing patterns, can help an autistic child become an early reader. I believe the correct term for this is Hyperlexia, my daughter taught herself to read words from a very young age, once I realised I encouraged her ability.

There was a down side to this, at 2.5 she was able to read signs and road names, on the telegraph poles on our walk to nursery was signs saying “danger of death”, she became terrified of telegraph poles because she thought they would hurt her. Despite me trying to explain, It took a while longer for her level of understanding to catch up to her level of reading, and eventually the fear of them left her.

They may have an amasing memory , my nephew appears to have a photographic memory, it is an advantage with learning. Often only needing to be told or to read something once for it to become neatly stored away in their mind. They often have a thirst for learning and a mind for holding facts, noticing patterns and analysing fine detail. The questions they ask may appear a little different, but knowing how things work, why a frogs tongue is sticky, why hedgehogs have prickles and why the moon is white, may be of great importance.

Knowing their timetable and school routine can also be of great importance, it allows them to be prepared and know what is expected of them. Change and anything out of the blue can throw them out and cause a huge amount of anxiety.

Anxious worrier

The anxiety they have felt at school, due to sensory overload, routine changes and being overwhelmed, often doesn’t come out until they are home. It can be expressed in an anxious dialogue of worries or it can be like a volcanic eruption of emotions, such as an angry outburst or Negative behaviour. They may have a meltdown or a shutdown, they may have stomach migraines and sleepless nights. None of which are seen at school, so they miss out on an accurate diagnosis and support.

My daughters anxiety often comes to a head at bedtime, she will avoid going to bed for as long as possible because she knows that that is when her thoughts have a free reign, some nights she doesn’t get to sleep until 2.00am or later. Worrying over all sorts of things, whether the school fire alarm is going to go off the next day, the house catching fire, me or her dad dying and a whole host of other things. If she isn’t sure why she is feeling anxious and isn’t able to explain it, her mind will find something to worry about, something she can explain and something safe.

She has already started to ask for days off school, so that she can avoid the thing that she is worried about or the thing she doesn’t feel she can do. Some days it’s so she doesn’t have to worry about the fire alarm going off. If she can stay at home and not go out and she is with me, she is fine and her anxiety goes until bedtime or she sees something on TV. I no longer let her watch the news.

Working with autistic children while they are young, teaching them to understand big emotions and giving them support for their fears and anxiety, can give them the resources they need to cope as they go through school. Leaving it until the problems become more of an issue can halt their learning later on and prevent them from having the school experience and success they deserve.

I know from personal experience how bad it can get, school can be a nightmare experience, and it is not something I want my daughter to go through. I want her to have some support and to be taught the tools she needs to get her through school. I may come across as an overprotective mum, but I know what the outcome can be when the support and understanding isn’t there.

When a parent says their child is struggling, they mean their child is struggling, it shouldn’t have to be a fight to get them help. Yes, they may appear fine at school, but that doesn’t mean they are fine.

My daughter has the transition to the next school soon, I am well aware that is when things start to really change, the friendship dynamics change and become more complex, with new children in a class making new friends is often difficult. Then there is the movement between lessons to contend with, new staff, and new expectations. That was when things started to fall apart for me, and I worry whether the same will happen for my daughter. Although she has more confidence than I ever did and she hasn’t had the experiences I did. I so wanted to get everything in place before then, set up a support network for her, if she ever needs it.

Overwhelmed and the Anxiety Tornado

This week, the last 9 days at least, has beaten me.

There was just to much to deal with; my partner has been poorly for a while and I have been worried about him, his operation keeps being cancelled. I also need to get my coursework finished, need to get the unit submitted by the 28th of this month, so I am panicking a little. It isn’t helped by the fact I am exhausted all the time and fall to sleep at the drop of a hat, the current thinking is that it could actually be my medication that is the cause so I have a phone call appointment with my GP to change my meds.

I had an appointment with Early Help a week ago Friday, and it would appear we are back at the start again, they don’t really want to support my daughter.

It was that that broke me.

I got swept up into a full on anxiety tornado 🌪 and my feet couldn’t find solid ground again, they still haven’t if im honest, I just can’t seem to be able to reign it back in. Everything has just got a bit to much. I accidentally said something stupid on a public page that was meant for my profile, didn’t realise until people commented.

It didn’t help that one of the early help people caused me to think that I am to blame for my child’s anxiety, I had done really well up until that Friday, I had completed trauma counselling and I was keeping control of my own emotions. I never let my daughter see my anxiety. I am not sure she understands what autistic anxiety is if I am honest, how it works and manifests itself. I don’t know who I am meant to rely on and trust anymore.

If that is what they think and what school thinks, how am I meant to face them again, how am I supposed to face school again if they truly believe that I am to blame. I have done everything in my power to help my daughter with her anxiety and worrying. I am sat here with my heart racing, head pounding, and its not even Monday yet. I don’t think I can face the staff again. I guess that’s where black and white thinking comes in, as I just can’t see past it.

As petty as it may sound, all I want to do right now is to run, is to avoid people and to escape. I want to leave but I can’t.

Once this course finishes this month, I am going to take a month off at least, as I have done 3 courses in a row. I think I need a break.

The Hair Nightmare

“Mum, it hurts, can’t I just wear it down” my daughter yells for the 5th time that morning; ever since my daughter was tiny her hair has been a bit of a battle ground.

She was born with very fine wispy hair, a very small amount, which didn’t really grow much until after her first birthday. As it grew it became thicker and she had a head full of tight curls. She has always hated having her hair washed and brushed, styling it was pretty much a no go area, but as a toddler it was still quite short and because she could wear it down at nursery it wasn’t to much of a problem at the beginning.

As it got longer and thicker it was much harder to brush, and would knot easily. If the brush tugged at her hair she would scream and cry because it hurt, it seemed to hurt more than it should have.

She no longer has curls, but her hair is so thick and long, and it grows really quickly. She has to wear it up every day for school, it took ages to find hair bands that she could tolerate, especially as they had to be in school colours. She couldn’t use the ones that had the metal bits or the thin ones as they would get tangled up in her thick hair and cause pain when removing them.

I realise now that having her hair brushed is a sensory problem for her and it is difficult for her, I also realise she is sensitive to pain and experiences it at a higher intensity/level than other people do.

I am the same with pain, although I am not hair sensitive, if someone pokes me in the arms, shoulders or legs, it hurts far more than the pressure applied warrants. I find massages incredibly painful and cannot tolerate them.

If I am not careful when rushing and styling my daughters hair and it tugs/hurts, it can trigger a stomach migraine. She will go white as a sheet, end up with stomach pain, pai which won’t do until she has been sick.

The same thing happened once when she was having her cut, my mums hair dresser was cutting her hair and she suddenly developed a stomach migrain and couldn’t continue until after she had been sick.

Recently, she has been getting a lot of knots in her hair, brushing them out has been a challenge as it hurts her to much. One particularly stubborn knot I ended up cutting out, as it was high up, its lucky it was underneath her hair so at least it isn’t noticeable.

Over the years we have tried and rejected so many different hairbands and hair brushes, and we are down to one type of each. She changes schools soon and they don’t do the hairbands in the new school colours, so we will have to fight that battle when it comes.

Autism: The Legacy of Sexual Abuse

Bored and alone I sat on my porch doorstep, I had knocked for my friends, but no one was able to come out to play. So, when my neighbours son invited me in and up to his room I jumped at the chance. He was friends with my older sister and brother and he was a neighbour, so I thought it was ok. But, when he locked the door the atmosphere changed and I knew I had made a mistake. A while later, I have no idea how long exactly as I didn’t really understand the concept of time at that point, I could hear my dad and a friend calling for me. But, to begin with, he would not let me out of the locked room. He made me promise not to tell anyone, told me no one would believe me anyway and that they wouldn’t like me because of it. Eventually, he walked me out to meet my dad, explaining that we were listening to music and playing board games. I was 7 years old.

That was not the only occasion he locked me in. I have had a fear of being locked in and of locked doors ever since, I can’t handle being inside lifts in case I get locked in. I struggle with worrying about what people think of me, I people please so that I am liked, that is until I panic and get myself tangled in a web of apologising for who I am and trying to explain myself, my panic, and my actions. There are times when I react, before the thinking part of my brain kicks in, anxiety (PTSD) has been my constant companion ever since.

He was not the only one to have hurt me.

“Now, a study finds that 90% of autistic women are victims of sexual assault.

The findings, published in Frontiers, show that 56.28% of the victims were 15 years old or younger when they experienced the first instance of assault, with 67.8% of people aged 18 or younger.”

Open Access Government– April 28 2022 –
https://www.openaccessgovernment.org/nine-out-of-ten-autistic-women-are-victims-of-sexual-assault/134603/

It makes for scary reading doesn’t it, it certainly scares me; I have a daughter who I believe, like me, is on the autistic spectrum. I may be overprotective, but I know firsthand the dangers, and I need to make sure she is equipped to protect herself from these dangers.

I grew up in fear, wondering if my intuition was accurate or not, I grew up being hypervigilant towards the environment and the people around me, my anxiety would be triggered regularly in an effort to protect me from danger. I would react to smallest thing. I had been told that I wasn’t likeable, so I stopped being myself and in doing so I lost myself, I didn’t know who I was anymore.

In an effort to protect myself as a 7 year old, I tried to make myself invisible, I had my hair cut really short to look more like a boy, I hardly spoke, and kept myself to myself apart from a few trusted people and I stayed in the background. It isolated me. My favorite time was the hours I spent across the fields and in the woods alone, with a net and a bucket, pond dipping and documenting insects and bugs. The woods are still the one place I go to relax and remove the tension and pain that is often held within my body.

When my daughter reached the age I was when the abuse occurred I completely broke down, it didn’t help that every day on the school run I had to walk past one of the places I was abused., and for a while, it become too much. Although I wasn’t fully aware of it being a trigger, the panic was constant and I was scared in case something happened to my daughter and she wouldn’t be able to tell me. I couldn’t tell anyone what happened to me, not until I was 14 (long after it had ended), even then due to not being able to show emotion and cry while I was disclosing, the seriousness of it was overlooked for many months. No one heard me!!

Some of the traits of Autism make us vulnerable to predators; we find it difficult to read other people’s intentions, and we take people literally and believe what we are told. Which makes us easy targets for experiencing abuse from others.

Before the abuse, I was quiet and shy, afterwards, I hardly spoke to people I didn’t know well, including teachers. Trust was a huge issue for me, in fact, it still is, I went unheard and unlistened to for such a long time, that when it happens now I panic. What was the point of talking when no one believed you or thought badly of you anyway, and because I was so quiet it was harder and harder to communicate. Due to autism, I am not great at communication anyway, when I am anxious and tired that becomes an even bigger problem, there are times when it feels like my thinking goes offline, and finding the correct words and getting them out of my mouth becomes incredibly difficult.

Once people get to know me, they get to see the real me, but not everyone is patient enough to wait for that. They judge the anxious reactions that they see on the surface, they see the social awkwardness and communication difficulties, and they make assumptions and gossip. Once past the uncomfortable small talk stage, communication becomes easier for me, when I feel heard, I can talk freely. But, it takes time for that, and people don’t have time, especially the “professionals”. I am grateful to the people that took the time to hear me and to get to know me and see the person behind the mask.

With recent the recent diagnosis of autism and with Trauma Therapy, I am relearning who I am, I am more than the trauma and I am more that the autism. I am no longer a victim, I am a survivor, and I am stronger than I ever realised.

The Tired Tales of an autistic parent

There are times when I really don’t want to be autistic, and today is one of those times. I watch others having conversations and wish I had their ability, I do to a certain extent, that is until I don’t.

My daughter had a party to go to at the weekend, I stayed with her, it meant I had to be social. There was loud music, so I had to work really hard to hear and process what the people talking to me were saying, so it took a lot of energy. My daughter and I both enjoyed the party, but by the time I got home I was exhausted and fell to sleep for 2 hours. I got up tired again this morning, after school drop off I had coursework to do, so no chance to relax.

Mental Block

I had an appointment this afternoon, I started off really well with talking and getting across what I meant, although I had only met the person once before, he was quite easy to talk too. And, he listened.

But as time ticked away and I felt more and more tired, my speech started to break up, there were long pauses because I could no longer find the words I needed to finish what I was saying. I guess you could call it a mental block, the thought process for speech slowed and broke. I became accutely aware of it and my anxiety rose because I was so focused on it, I became more and more self-conscious and all I wanted to do was apologise for being me.

Tiredness reduces my abilities to mask, it reduces my cognitive ability, and I get stuck. When I get stuck and can no longer find the right words to finish a conversation, I panic. Especially when it is something important or connected to my daughters school.

Autism becomes more noticeable when I am tired I guess, thats why at the age of 40 when I burntout, it was first suggested I was autistic. What I used to believe to be Social Anxiety, is in fact classic autism.

Today I feel ashamed of it, I don’t want to struggle in this way, I want to be like the other parents, the neurotypical parents.

Limited Time

I have not planned my week very well at all, I try to spread out social commitments, such as appointments. I try to schedule in recovery time (recharging social battery), which I have failed to do this week.

We had the party at the weekend, today I had an appointment, tomorrow I have another appointment, Wednesday my daughter has an appointment, Thursday Is parent-teacher meeting. I have to build myself up and prepare myself for each social commitment, I will manage it all, but I will manage it while feeling exhausted.

Some people are easier to talk to than others, family and friends in a 1:1 situation doesn’t use much energy at all. People I trust but don’t know well can be a bit more difficult and energy consuming, but other people are a lot harder to talk to, it uses a lot of energy and concentration, and time with them is limited before the autism sets in. Oh, and the tiredness is all consuming, I seem to be permanently exhausted at present and as soon as I sit down I fall to sleep. I have even got up in the night to use the toilet and fallen to sleep on the loo, only waking when my head hits the wall, how bad is that.

Someone Else Do The Talking

I have been so scared that I will “mess up” communication wise with my daughters school, that I felt I needed an advocate to do the talking for me, so that I didn’t let my daughter down. I struggle with communication, but I need someone to listen and take what I say seriously, so my daughter doesn’t get let down.

I have parent-teacher consultations this week, but I know it takes me time to process and fully take in what is said, especially when nervous. I know I am going to be anxious and I know I won’t be able to say what I want to say. Because of being anxious I know I will forget a lot of what is said as cognitive thinking goes offline. I think the zoom session is 10 – 15 minutes long, so a lot to take in in a short space of time. It is important I know how my daughter is doing though and I want to attend.

I wish I was like other parents.

Autistic Girls – In The Classroom

For some autistic girls, autism is very noticeable as they have more of the stereotypical traits and difficulties.

But, what happens when the traits and difficulties are more subtle, subtle is probably the wrong word, hidden behind a mask may be more suitable. They are struggling just as much, but their needs often go unseen or unheard at school, at least in the beginning.

When they reach the age of about 12, some autistic girls reach autistic burnout and their ability to cope and mask wavers. Friendship dynamics change a couple of times, first being around 8 years of age, and then again at around age 11 – 12, especially within girl friendships.

Expectations placed on their shoulders also change, they are no longer little children, so they are expected to be more independent and more grown up. There are a lot more rules to learn, especially with the transition between schools.

With their autism and difficulties going unnoticed, it means their needs are not being met. When their needs are not met, it can lead to burnout and mental health problems, and in turn can lead to suicide. There are a huge number of autistic young people commiting suicide, the statistics do not include the undiagnosed autistic children and young people. Support needs to be given from the begining, if we are to save the lives of our young autistic people, and that means there needs to be better understanding from schools and better diagnostic tools.

Sensory Processing Disorder in the Classroom

Photo by Monstera on Pexels.com

In an effort to control the classroom environment, some autistic girls become tattle tells, to get their peers to follow the rules and in doing so calming the chaos. It doesn’t make them very popular with their peers, but it isn’t meant personally, its so they can manage the classroom environment. They may also come across as bossy or rude for the same reasons.

Sensory overwhelm can make a child (or adult) feel as though they need to escape, causing them to run from the classroom when the opportunity allows. I spent a huge amount of time in the quiet of the school library or I would fake a headache to hide out in the dimly lit cubicles of the medical room. I spent most of my time with the school nurse in the last school, it was the only place that felt safe to me.

The sensory sensitivities that can cause problems in a classroom or at school include:

Sound – Loud sounds and lots of noise can be hard on an autistic sensory system, for different reasons. Loud sounds, such as the school fire alarm, can cause pain in the ears and triggers anxiety and panic.

My daughter struggles with a peer in her classroom who screams, it really hurts her ears and can make learning difficult, even more so when it is constant.

Background noise can be a problem for autistic, it can be hard to filter out all the different sounds, making concentrating on what the teacher is saying difficult. They may miss important information for their learning, and may appear as though they are not doing their work, when in fact they need clarification. I often got in trouble for not completing homework, but the truth was, I just didn’t hear what I was meant to be doing.

Smells – Problems with smells can be more difficult to spot, it is one of the rarer sensory sensitivities. Me personally, I can not wear Purfume or be near strong scents, in particular lavender, although I may like the smell, it gives me a headache and causes nausea. If there is a strong smell, it can stop me from concentrating, hospital smells can trigger anxiety. I seem to be able to smell smells others can’t

My daughter on the other hand is obsessed with smells, she will go and sit in her friends mums car just to be surrounded by the smell. She talks about smell a great deal of the time and will seek out certain ones. If she goes somewhere new, ther first thing she notices is the smell.

Sight – Certain lighting can be problematic for autistic children, as can colourful busy displays on walls, they may not always be aware what is making them feel awful, they just know that they feel it.

Patterned carpets can also be in an issue, certain patterns can make it feel as though the floor is moving under foot, causing nausea, unsteadiness, and anxiety. Can you imagine spending all day sat in a room feeling as though it is spinning.

in the same way visual stimuli can be problematic, it can be used as a calming and self-regulation tool. The dimly lit, neutral coloured cubicle of the medical room helped to reduce overwhelm for me. After spending an hour there, I could return for the next lesson.

Touch – How clothes feel against our skin can lead to sensory overwhelm, if it feels dusty or scratchy it is difficult to move our focus away from it. My daughter can not and will not wear jeans, she finds them far to uncomfortable. As soon as she is home from school, off comes her socks and down comes her hair.

Brushing her hair is a nightmare, it hurts to much for her, she has to wear it up for school all day, and its taken several years to find a hair band that she is able to tolerate and is happy with. If her hair pulls and hurts when being brushed or washed, she flaps her hands at the side of her head. There is a strong possibility it will cause a stomach migraine also.

Touch is really painful for me, if I am touched on my shoulders, arms or legs, it hurts far more than it should. I avoid hugs unless its with people I trust and feel comfortable with as it is uncomfortable to be hugged and touched.

Vestibular and Proprioception Sense -Sensory problems with these senses can cause the autistic child difficulties with PE, gymnastics, sports day, climbing, tieing laces, riding a bike, doing up buttons and zips, and other kinds of movements. It can cause clumsiness and accidents. The child is likely to avoid situations that require them to do these tasks, feeling a huge amount of anxiety if forced to do so, especially in front of their peers. It has nothing to do with laziness or being awkward, it has everything to do with a sensory difficulty, there is very little awareness in this area in school.

Perfectionists

Autistic girls are perfectionists, when they make a mistake its devastating to them, they may not show that struggle at school though. But, it will all come rushing out when the child is at home, so it is important teachers take notice and listen to the child’s parents. It may stop them from trying certain tasks, sometimes its better not to take part than it is to make a mistake.

There is often the need to watch first, if there is a task they are unsure of and their is the chance they could get it wrong, watching their peers first and then deciding whether they can take part is an option. There is the risk they refuse to take part though, my daughter will dig her heels in if she feels she can’t do it. She needs reassurance and encouragement to be able to take part.

Friendships

Autistic girls tend to build friendships with children that are older than they are, or children that are younger, friendships with their age group may be a struggle.

They may appear to be mother hens, taking younger children under their wing, making sure that other children are not playing on their own.

Friendship dynamics change at about the age of 8 and then again at the age of 11 or 12. Its during these times that friendships tend to break down, despite the autistic child being aware of why or what has happened.

I relied to heavily on one of my friends, when we transitioned between schools, she quickly made new friends. But, my differences made it more difficult for me to do the same, I felt isolated and alone for a long time. Despite remaining friends out of school, during school there was problems, and eventually the friendship failed. One of my school reports wrote I was a loner, a later one said I had a small friendship group. It took me time to master friendships in the last school.

Talk for England or Painfully quiet

Sometimes it can seem like you are dealing with 2 completely different children, with some people, people they trust, they can talk with no problems at all. When its a subject they are really interested in and know a lot about, they can “info dump” for ages. It takes time to build those relationships up enough for that to happen. But, with other people the communication differences and social interaction problems are more noticeable, it may show itself as being shy or painfully quiet.

Reading my Maths school reports and comparing them to other lessons is eye opening, my maths report could of been written about a completely different child, it was vastly different compared to English or science. I joined in more, I had more success and I usually turned up for the lesson, what it doesn’t tell you was that class was a lot smaller, less children, less chaos and the walls were not plastered in bright colourful displays. The maths teacher himself was more understanding compared to others, he noticed my struggles and gave the support.

It can change with age, they may be more talkative when younger, but as they get older and realise themselves the differences between them and their peers, can cause them to become more withdrawn at school. At the age of 11 or 12 is when Social Anxiety starts to become a problem for autistic girls, they recognise their difficulties with communication and social interaction. They will observe their peers, learn what works and is socially acceptable, they may hide their true selves if they feel they are not good enough.

Masking

Masking is exhausting, there is a time limit on how long an autistic person can mask for and appear neurotypical. It can lead to social hangover, autistic burnout and Depression.

Autistic girls make good psychologists; they observe their friends and mask, they learn how to be neurotypical to an extent to fit in, they can become experts at it, but as it is not something that comes naturally ot comes at a cost to them and is exhausting. It has a huge impact on their mental wellbeing.

Rules and Routine

Rules an routine are important, it gives us some structure to follow, it allows us to know what is expected of us. Uncertainty is a big issue for autistic people, it gives to much room for anxious thoughts to cr8eep in.

Time tables and To Do Lists are great for this, providing us with just enough information to make it through the day. We often need to know what we are meant to be doing and where we are meant to be.

Changes can throw us, changes to the school routine can cause a great deal of panic and uncertainty, and throw us of balance for days. They can take the form of school trips, visitors and other events such as plays.

Just because a child isn’t exhibiting challenging behaviour, is quiet and conforming to your expectations, it doesn’t mean they are coping. Its hard work doing all of this.

As a parent I have to trust that my daughters teacher will check in with her and make sure she is coping by asking her, I can’t be with her at school, all I can do is pick up the pieces and listen when she gets home.

Teachers need to listen to the parent when they say there is a problem and their child needs some support. The sad thing is there is very little support in school for the undiagnosed and when their struggles are not obvious

Autism – A Different Kind Of Anxiety.

There has been lots of tears in my house tonight, but finally my daughter has fallen to sleep, she is going to be exhausted at school tomorrow.

a torrent of worries and anxieties came flooding out, we spent time talking about them and trying to find the more likely outcome. I have come to realise that this type of anxiety is all part and parcel of being autistic and being sensitive to the world and our environment.

Tonight the fear of growing up and dying crept its way back in, but as I am older than she is, she is also terrified that I am going to die and her dad. Its not helped by the fact her dad is poorly and has been in a lot of pain for months. The fear that our house was going to catch fire and burn down was also thrown in, as well as her much loved toys being burnt. School swimming was in there too.

I noticed something else today, why I had not realised it before as I have the same issue, I don’t know. I realised the more she has had to do and process the more anxious she feels. She may not always know exactly where the anxiety stems from, so it turns into random worries that she can explain and ones that are easier for her brain to deal with.

Take me for instance, I was sat here feeling on edge and a whole host of other emotions, but I didn’t know why. I had to break down the last couple of days, I have had a lot going on, including viewing a new school. We were sat in a hall full of people and then went on a tour of the school. Although I handled it, it took a lot of energy and anxiety, anxiety I had to hide from my daughter. I also had appointments, the school run, walking past the place I experienced trauma. Not knowing exactly where the anxiety stemed from and having no outlet, my brain turns it into worries and something that is easier to process.

Weekends, where we do nothing (recovery days), the worrying is less. Still there, but a lot less, more specific and less random. School holidays are our saviour.

Autistic anxiety is pervasive, it grows tentacles that grow and reach in to every area of life. As the autistic person grows, so does the anxiety. Its horrible, its horrible feeling anxious and scared a lot of the time.

Not only do we have our own emotions to deal with, we have the emotions of the people around us as well, being hypersensitive, we feel and take on board other peoples emotions like they are our own. So what I was feeling when on edge, not all of it belonged to me, some of it belonged to the people that I have spent time with over the last few days. Thats why we spend a huge amount of time at home. At home the anxiety is less.

Sensory Processing Disorder Anxiety

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Sensory sensitivities trigger anxiety, no amount of time spent with the Sensory Sensitivity relieves the Anxiety.

Loud noises, such as fire alarms, sirens and motorbikes, will cause sudden panic, and it hurts. So you fear the loud noises before they happen, especially when you are a child, throw in other sensitivities too and in comes sensory overwhelm and you become anxious.

Due to the sensory problems, even things like patterned carpets can be a problem, for children they may know they feel awful but not know why. Certain patterns are worse than others. Navagating a room with a patterned carpet can feel like walking through the hall of mirrors at the circus, it feels like the floor is constantly moving.

Loud noises happen, smells happen, patterns happen and they are really hard to avoid. Its impossible to avoid it all. You can’t really avoid the anxiety associated to sensory overwhelm, you just learn stratagies to cope and manage it as best you can.

Social Anxiety

Social Anxiety is often a result of being autistic, it often occurs from around the age of 12 and stems from years of trying to fit in and the social difficulties we have that make us different.

Growing up in the 80’s and 90’s, autism was less known, I remember watching my peers in awe wondering how exactly they managed to keep up and manage the things I found so difficult. I felt like a broken human being, who was failing at life because I was different, the truth was I was autistic and wasn’t handed the same skill set. I was embarrassed by it, my peers often became frustrated with me, and I relyed to heavily on a neurotypical friend which caused the friendship to breakdown.

Although there is still a long way to go, there is much more awareness now, and a lot of kids are more accepting and have more patience. My daughter doesn’t have a best friend, at the moment she seems to be friends with everyone and the younger kids especially seem to love spending time with her. As you get older friendships become more complicated and change, they become harder to navigate and you become more aware of the differences.

I was definitely socially awkward, due to trauma I was battling with trust issues and hypervigilance (PTSD) on top. Communicating was so hard for me at the age of 12, that I became painfully quiet, I become so scared of making mistakes and people misunderstanding me that I barely talked except for a select few of close friends. As my school reports stated, I was a loner and far to quiet.

When there is a lot of background noise and sensory information to contend with, processing and following what the person talking to us is hard, which leaves us worrying whether we have misunderstand something or missed important information that we need.

As I have got older, through watching peers I learned what was socially acceptable and masked a whole lot. But, I still struggled, had many friendships breakdown and didn’t know why.

My diagnosis this year surprised me in that it gave me some confidence, I no longer feel a broken human being, I have a name for it. If I feel I misunderstand something, I will ask for clarification. I am talking more to the people I feel comfortable with, I even spoke to the Sendco at the school we visited this week, a year ago I would not have had the courage to do that for fear of sounding stupid. Diagnosis has freed me a little from the restraints of social anxiety.

The thing is I know my daughter has all this to come, I am hoping things won’t be as difficult for her as they were me, but seeing what other parents have said about their autistic children this time in their life is hard. I am hoping to give her enough tools in her toolbox to cope.

School Anxiety and School Avoidance

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Routine is key, if routine stays the same and their are rules to follow (structure) it makes things easier for autistic children.

They may become tattle tells in an attempt to control the classroom environment and get their peers to follow the rules also, to calm the chaos.

Problems often arise when there are changes to the school routine, sports days, school trips, special events and so on. When my daughter had to change for pe if the class above, it completely threw her and she needed help, normally she would of been ok.

Uncertainty is an autistic persons enemy, it generates so much unnecessary anxiety. Due to our autistic traits and difficulties, there is often a strong need to know what we are meant to be doing, where we are meant to be doing, what is happening around us and what is expected of us. As long as we have those four things we can often manage quite contently. Changes to routine removes all of those things and leaves us with uncertainty.

Uncertainty is difficult to deal with, especially when we are trying to deal with all the sensory information that is bombarding us 24/7 and processing conversation and instructions. Neurotypicals seem to naturally filter out unimportant information, the neurodiverse don’t seem to have that ability to do that, it takes a lot of effort, when tired we lose the ability altogether and become overwhelmed.

The transitions between teachers (years) at school can be anxiety triggering, you get to know a teacher and their expectations and then it changes again, you have to learn their personality, what they expect from you and the class. It is means another teacher needing to get to know the child, get to know their difficulties and their needs, which takes time and means there needs often get missed. As soon as they teacher gets to know them, along comes another, autistic children often need a “go to” member of staff. A member of staff they trust and can tell when they are struggling, someone they don’t have to mask with.

Transitions between schools are far more difficult, finding your way around without getting lost, getting to know what is expected of you, learning new routines and getting to know new people. Its at this time when things tend to fall apart and trigger the most anxiety.

I did not cope with the last school at all, I was off school a lot of the time, when I was their I needed to escape the classroom environment so I spent a huge amount of time in the library and medical room. I was constantly anxious the whole 3 years I was there, it made me ill, I became suicidal and self-harmed. I was completely lost.

I am hoping my daughters experience will be different, I had no support, and I am hoping she will have that support. I am doing everything in my power to give her the opportunities and support I didn’t have.

I wish schools were better at communication between school and home, I don’t have supernatural powers, I can not see what has happened during the day that could possibly be a trigger. They didn’t let me know what was happening today with regards to swimming, not until I asked as it risked another day off for my daughter, if they told me then I could of prepared and reduced her worry. I wish they would talk to me. I am the one left to pick up the pieces after all. Where is the open communication, I thought it was autistic people that struggled with communication, schools appear to have the same problem. There is definitely an element of “if your face fits”, seem to go all out for same children and families but not others. I feel let down with help for my daughter by the same system that left me to struggle as a child.

So many autistic children end up out of school due to anxiety and mental health problems, they are entitled to an education just as much as neurotypicals are, yet they are let down by a broken system and a lack of up to date training.

Recent studies suggest that it is possible that there are just as many neurodiverse people as there are neurotypicals, yet a large amount remain undiagnosed. Schools are not designed for the neurodiverse, the education system isn’t either. It isn’t right is it. There needs to be a shift in society and how it views autistic people.

Mental Health Problems

There are several autistic traits that predispose us to mental health problems, for a start, we struggle to read other peoples intentions. This puts us at a higher risk of abuse which can result in PTSD

There are a high number of autistic women and men in the grips of domestic violence, a lot of autistic people also report having experienced sexual violence. Autistic children are easy pray for pedophiles, there trusting nature, difficulties with communication and taking what people say literally make them easy targets.

The black and white thinking, as well as the analytical ways of thinking can be a factor for mental health problems. Due to our difficulties socially and with communication, we tend to analyse every conversation and social interaction, looking for where we went wrong, whether we made a social error. We don’t let go easily and when stuck in a thought cycle, especially if it was a negative experience, it can lead to low mood and anxiety. The analytical mind is great for learning, but not so great for mental health and anxiety.

We also experience emotions differently, they are often felt at an intense level or not at all, when experienced at an intense level daily it zaps energy and causes exhaustion. We experience our environment differently, both sensory and physically.

Then there is our imaginations, my daughters imagination is a wonderful gift, but it can also create a lot of anxiety for her. When faced with a new task or event, she can think of every possible outcome at the drop of a hat, the trouble is, just like me, she often focuses on the worst case scenario. I am working to try and change that, when she is awake worrying at night, I try to change her focus to more positive outcomes and to guide her to find the more likely outcomes. But, it doesn’t always work, sometimes she just has to go through the whole process and accept the anxiety, as do I.

Right now I am worn out, we are only 4 weeks into the school term, it should not be this hard.

Autism – 5 Ways To Reduce Sensory Overwhelm

During sensory overwhelm, there is often a strong need to escape the environment they are in, a child may run from the classroom or try and escape the school building.

It isn’t just children who experience sensory overwhelm, in the case of an adult, they may walk out of their job and quit, to get away from what is causing them sensory overwhelm.

Number 1 and probably the most important:

1. Know The Child Needs

Get to know the child, learn what their difficulties and strengths are, learn what their needs are. Listen, actually listen to them and ask what they think would benefit them when in sensory overwhelm. Listen to the parent, they know their child better than anyone else and have tried and tested every method and strategy possible. Open communication is important, especially between home and school.

Ask the child if they are ok, just because they are quiet and not exhibiting challenging behaviour, it doesn’t mean they are ok. They may be struggling and shutting down, they may be balanced on the edge of overwhelm. Be the child’s go to person, someone they feel comfortable talking to when distressed, it takes trust and a sense of feeling heard. They need to have their worries listened too, as they are very real to them, don’t just dismiss them and say “we all have to do things we don’t like,” that breaks down trust.

2. Safe Space

Either in the classroom or outside the classroom, a safe space where they can escape to when needed. Preferably without items they can hurt themselves on or hurt others with if they lash out or start throwing things.

It will help to calm the flames of sensory overwhelm, allow them time to recover and return.

3. Sensory Neutral

It will be beneficial if the space can be adapted to meet the needs of the individual using it.

Every autistic child is different, some may be hypersensitive and some hyposensitive, others have a different combination of the two. For example, someone may be highly sensitive to sounds bit Hyposensitive to smells and use smells to calm themselves

For someone who is Hypersensitive It needs:

• No visual stimuli -Dimly lit, no colourful displays, visual stimuli needs to be kept to a minimum. Neutral paint on the walls, grey, beige or creams.
• Quiet – double glazed and soundproof if possible, to block out loud or uncomfortable noises. In a shared space, this is more difficult, talking needs to be kept low.
• Smell free -if possible, no strong smelling scents, such as cleaning products, air fresheners, perfumes or cooking food smells.

For someone who is Hyposensitive It needs:

• Visual stimuli – Sensory Lighting, colourful images, things that are pleasing to look at.
• Soothing Sounds – some autistic children may be sensory seeking, needing music or sounds to help regulate. Guided meditations.
• Scented – some scents can be soothing for some children, they may only be able to smell really strong scents.

I really struggle with strong scents, I can’t wear Purfume or tolerate anyone else wearing it, it gives me a headache and nausea, lavender is the worst. My daughter on the othe hand loves smells and will seek them out, she will sit in her friends mums car as she loves the smell.

4. Comfort

The safe space needs to be a comfortable, not too hot and not too cold, some autistic children find it difficult when they are too hot or too cold and it can add to the sensory overwhelm.

Comfortable seating or even a bed if possible would be beneficial, allowing the child to relax and feel comfortable.

In sensory overwhelm, adrenaline is released into the bloodstream. Some times some physical activity, such as walking, running, jumping, and skipping can help to burn some of the adrenaline up, helping to reduce some of the uncomfortable symptoms.

5. Accessorise

Sensory products can help minimise the impact of sensory overload, for example fidget toys, sensory tiles or squidgies. They can be a good distraction and a sensory relief.

Weighted blankets, bean bags, sleeping bags are other good items which can be a benefit to sensory overwhelm.

During sensory overwhelm adrenaline is released into the bloodstream, which is the cause of a lot of symptoms, burning up the adrenaline through activity can also be beneficial. Walking, running, jumping, climbing and skipping can help to burn up the adrenaline and relieve the symptoms, as can exercise.

Reading, crafting drawing, writing and exercising can be other good distraction activities which can be beneficial, items for these activities can be added to a sensory safe room.

Personally, I would escape to the medical room and. lay on a bed in one of the cubicles. I would fake a headache or illness, I didn’t know I was autistic then or the reason I struggled in a classroom environment was probably down to sensory overwhelm. All I knew was I had an intense feeling of needing to escape. The medical room cubicle was quiet, dimly lit, beige walls, empty and I was alone. I spent an hour there and had calmed enough to be able to return for the next lesson.

A place I rely on as an adult when I experience sensory overwhelm, I go for a walk in the woods or forest, away from people. I sit on a fallen tree, listening to the stream and birds. My partner says you can see the tension drain from me when I am in that environment.

Autism Motherhood – My Primary School

If I am honest, I was not ready for the day my daughter started school, it meant less time for us, and we so enjoyed our time together. My daughter, on the other hand, was more than ready, she had outgrown nursery, in fact, she was probably ready for school a year early than she started. A lot of her friends had moved up to school the year before her, luckily she got to see them still as the Reception class was attached to the Nursery by a playground.

There are times when I hate being the way I am, I hate being Autistic, and my daughter’s time at the first school is one of them. I wish I could talk as freely as the other mums do, I spend the biggest part of the time feeling awkward. I had an image of what I thought it would be like, I wanted to be able to help with school events like the school fayre, but it was just too hard. Standing at the school gate, seeing the staff come out to talk to other parents, they have never done that with us. They barely say two words. When my daughter is struggling, I have no idea who to talk to anymore, it has broken down completely. 10 months, that’s all the time she has left there now, 10 months and counting. I hope it will be easier with the next school. I wish I found it easier.

Being autistic is hard, it has always been hard, I can’t tell my daughter that I hate it. How can I when there is the strongest possibility that she is autistic also? I want things to be different for her, I want her to be able to embrace it and to belong, not live on the sidelines, I don’t want her to have the same struggles that I did. There are so many wonderful things about being autistic, so many strengths, and the love of learning, but you need communication in this world that we live in to get anywhere. No one hears when you are different.

Going To Big School

The morning she was due to start school she got up and was as white as a sheet, she had been really quiet for several days, and was really nervous. Which surprised me as she had spent a lot of time in the reception classroom during her last year of nursery.

I tried to make her laugh on the walk to school, and lighten the mood a little, but she was having none of it as her nerves were just too much for her at that point. She was happy to see her friends at the school door, I dropped her off at the Reception class door and gave her a hug. I had to trust that she would be ok, she wasn’t far from my thoughts all day, wondering how she was getting.

After school I met her at the Reception classroom door, she came bouncing out the door happily, talking about her day. Suddenly on the walk home she turned to me and said “mum, the school was still the same size”. Not understanding her meaning I asked her what she meant. “In nursery they said we were going to big school, I thought the school was going to grow bigger, but it was still the same size”.

My daughter takes things literally and has a wonderful imagination; over summer she had been worrying that school was going to get bigger and was going to change. Not about starting school itself. Now she had seen it had stayed the same she was absolutely fine and had no problem going in.

She didn’t really like the Reception class teacher, she had a bit of a bad experience with her while she was in nursery where the teacher had taken photos of her while she was crying. She had been struggling to get her coat on and was upset, it didn’t help having her photo taken and it being stuck on the Tapestry log. She never really gelled with the teacher after that, she found her too strict and shouty. But, it didn’t stop her progressing, she did really well that year.

I realise now, from doing an Autism course, that the difficulties she had with putting on her coat and riding a bike, could be connected to autism. As well as not being able to use the climbing wall and difficulties with engaging in certain school sports. Sensory Processing and the vestibular sense and proprioception could be to blame or Dyspraxia. She still hasn’t mastered riding a bike or doing up shoe laces, she needs time to do these things, if she feels rushed she will dig in her heels and not try again.

It’s quite sad the teacher didn’t have the awareness, she shouldn’t have taken that photo when my daughter was clearly struggling and in distress. Her needs were certainly not being met on that day. It wouldn’t have encouraged her to keep trying, she did eventually get there with it, she always does when allowed time and not made to do it in public.

School holiday

I learnt quite quickly that my daughter needed a good week of doing nothing at home, she needed that time to wind down from school. If I am honest I did too, school runs are hard, really hard. Far to many people talking in one place, I often came away with my head buzzing, and high levels of anxiety. I needed to unwind time too.

I stopped feeling guilty by seeing what everyone else was up too, I realised my daughter only needs one or two set days out a week in the holidays and the rest of the time spent at home. Going out too much has a huge impact on her wellbeing, it tires her out and she needs time to recover, I know because I am the same. She would rather stay home and not go out at all.

It was during the first summer holidays my daughter started experiencing flashing lights in her vision and stomach pain. I booked her an eye test, and they wanted her to be seen by the hospital as there was a problem with her eyes. It was the consultant during one of the appointments that diagnosed my daughter with stomach

School Run

I used to hate the school run, my anxiety would always be through the roof, my heart racing. It wasn’t until recently that I realised that some of it is trauma related, we have to walk past one of the places I was abused every school run, which is a trigger for anxiety. I used to think it was just down to Social Anxiety, but I now know differently, a big part of it is sensory related and some trauma related.

Small talk is not something I have ever found easy to do, it is awkward, and I never know what to say. I am lucky that there are a few people I have got to know and can talk freely with, not having to worry about the whole small talk thing. A couple have become good friends, I know I can rely on them to be honest with me, and to point out if I have misunderstood something.

There is one mum who is really hard to talk to, she gossips badly, and I have no idea how to talk to her so I tend to avoid her and her friends as much as possible. I don’t understand the point in gossip or being hurtful about people. There are a few people that are difficult to communicate with if I am honest, I struggle to follow whether they are being serious or sarcastic, and I never know what to say. I become anxious around them and when I am anxious the connection between though and speech breaks.

Moving Through School

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There are things that my daughter really struggles with at school, although quite often she will not let them know, I have come to realise that a lot of her worries and anxieties are down to autism related issues. Although she hasn’t had a diagnosis, I am certain that she is Autistic.

Sports day, PE and the climbing wall for instance, she got herself so worked up about taking part that she made herself poorly. I feel they are connected to difficulties with Vestibular sensory problems and problems with proprioception, she would never try any climbing activities, not even climbing frames in the park. She hates heights, if she is high off the ground she feels like she is going to fall. She finds gymnastics really hard and awkward as well, because it is something she finds difficult she doesn’t want to do it in front of her friends. Physically and sensory she finds these tasks hard to do.

Another thing she really struggles with is the school fire alarm, the school have been good and put things in place for her in this regard, but even with those in place she will keep asking if I think the alarm is going to go off that day. I have bought her some ear defenders, but she is too embarrassed to take them in to school, so will use them at home during thunderstorms. The other day we were in a building she doesn’t know to well, she needed to use the toilet, but because there was a fire bell directly outside the toilets, she was afraid to use them. She had to ask the woman that worked there several times whether she was going to set it off or not before going in. She has a massive fear of the house catching fire or lightening hitting the house.

She is too afraid to do the school swimming lessons in front of her friends, part of that I feel comes down to the autistic trait of perfectionism, she is scared of making a mistake. She had a bad experience when she was having private swimming lessons, which haven’t helped. Although I haven’t heard back from school about swimming lessons, they seem to have let her off doing them and not pushing her on it.

Another fear of my daughters is dogs, school are bringing in a therapy dog for the children to read too, I haven’t told my daughter yet. School do not know about her fear of dogs, and in all honesty who do I tell, I no longer have a go to person. I really am unsure in what to do about it, do I leave it and see how it pans out, or do I warn them. I guess if I don’t warn them, they will see her response first hand due to her not being prepared for it.

Undiagnosed Autism

At the moment she is undiagnosed, so support with school and at school is limited, and I am not sure that the recognise her difficulties and anxieties. I am worried I am seen as a nuisance parent due to emailing my concerns, so I have stopped, I feel we need someone to do the talking for us as they are more likely to be heard and listened too.

Autism Motherhood – The Toddler Years

They aren’t tiny for long are they, my child has always been taller than her peers, everyone kept telling me she would slow down at some point but it hasn’t happened yet.

Really I should of known she would be tall when I had to cut the feet off of her newborn babygrows. Her feet were so long, she was really long, yet only weighed 7lb at birth.

She is clever too, she knew her alphabet, numbers and colours by about 18 months, she had taught herself to read by the age of 2. They call it Hyperlexia, I didn’t know at the time, but that is a sign of Autism. She is like a sponge, hears or reads facts and they stick in her head.

We had an amazing Health Visitor, she was the one professional who actually heard me, got to know me for who I was. She understood the difficulties I had and was very supportive. She also understood my child, recognised her struggles and her strengths.

The professionals since then don’t listen, they don’t see (or don’t want to see) and they have let us down so many times. They certainly judge far to quickly.

Mother and Toddler Groups

I tried many times to attend Mother and Toddler Groups, I even tried different ones, but I couldn’t cope with them. Looking back I realise how much of a sensory nightmare they were, they were loud, smelly, brightly lit rooms, full of ready made cliques.

If I had had someone to attend with, it might of been easier, someone I knew and was comfortable with. But, the friends I did know who had kids, the kids were older and already in school. My sisters and brothers children were grown up.

I thought I would try story time at the library, but although it was up to the age of 2, my daughter was a lot bigger than the others that attended, despite being a similar age to some, and she constantly needed to move about so it didn’t work out and we had to leave.

I gave up trying in the end, it just wasn’t worth getting upset over and pushing myself beyond my limits. My daughter didn’t particularly enjoy them either.

I learnt from a young age that people hurt you, due to trauma I learnt to be weary of people and to be on my guard constantly, it meant I was always hypervigulant around people and lived in a constant state of fear. Home being the only place I am able to switch it off.

It adds to the difficulties with social interactions, I have to really be comfortable with someone to be myself and to be able to talk freely. Until then, there is an invisible barrier. Being in a constant state of fear is exhausting, I quite often end up burning out.

Starting Nursery

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The Health Visitor recommended that I sign my daughter up to start nursery for when she turned 2, due to not me not coping with mother and toddler groups. At nursery she would get the socialising that she needed and to play with children her own age.

My daughter started Nursery the day after her second Birthday, she never once cried at the door, not wanting me to leave. It was pretty much dropping her off and away she went, I was lucky if I got a goodbye.

She loved Nursery, it was attached to a school, so she got to see the older kids too, it was good for her. She flourished, I loved Tapastry and being able to see photos of what she was getting up too.

She is a mother hen, looked after the little ones, she has always been better with people older than her and people younger than her. She didn’t like seeing anyone upset as it made her feel upset.

The Nursery Run

How I hated the nursery run, a lot of the parents already new each other, for a long time I felt very much on the outside. They stood talking to each other, they appeared to find it so easy, but I didn’t know how to join in. I felt awkward and I really struggled to make conversation, it was like I knew what i wanted to say but I just couldn’t.

I was envious of how easy the other parents spoke to the staff, it was something I found really hard to do, often dropping my child off in silence. Occasionally the staff would talk to me, but not in the same way they spoke to the others, I understand that I wasn’t the easiest. Its the same outside of school now, I see the staff talking to other parents, yet barely say 2 words to me, I wish it was different, but I don’t know how to make it different. Given the chance to get to know people, I have no issues talking, but have never been given that chance.

I wanted to be like everyone else, I want to be able to have those conversations and to get involved with the nursery stuff and the school stuff, but I can’t and feel it has tainted the experience of first school. It sounds silly doesn’t it, childish even, but it is so hard.

I made a few mum friends, people i have learned to trust over time, and can talk to freely. But, others I find to difficult to communicate with. I used to blame it all on anxiety, specifically Social Anxiety, but now I know it is Autism.

Small talk is something I have never been good at, I don’t understand people who gossip, out of the different groups, people who gossip are the hardest to talk to. I was told the nursery run would get easier but it never did, nor has the school run and I’ve been doing it for 7 years now.

I don’t blame others, I find communicating hard, but that doesn’t mean I don’t want to or that I don’t want the connections with others. Being Autistic can be a lonely experience at times.

Swimming Lessons

I signed my daughter up for swimming lessons as a toddler, I felt it was a good skill for her to have as personally I cannot swim. The first couple of lessons went ok, but then they suddenly changed the the swimming coach without warning and on that day they were also making the kids duck under water, that was too many changes at once for my daughter and she has refused to go in a pool since.

Paddling pools she can handle, swimming pools at a leisure centre she can not. My daughter needs plenty of warning to be able to handle a change, she is a lot like me in that sense, if she doesn’t get warning for change she will panic. Even when leaving a park, I have never been able to say that its time to go now and leave straight away, I have to count it down in five minute intervals which she handles better and can prepare herself for it.

Theme park

We used to have season tickets for a Theme Park while she was still going to Nursery, she didn’t attend Nursery every day, so on the days she was home we would go every now and then. It was easier for her to go during term time, when the schools were on holiday the Theme Park would be packed and neither of us coped with it well. During term time it was so much quieter, with hardly any queues, making it less of a sensory problem and less chaotic. Now she is at school we are unable to do it.

The Best Days

3Photo by Ron Lach on Pexels.com

Our favourite days were spent at home, not having to worry about other people, doing our own thing. In an environment that was perfect for us. Home is our sanctuary, we have learned that we need to keep days out at a minimum otherwise he get worn out.

We would spend our days crafting, drawing puddle jumping, and looking at books. We are lucky to have a large garden and spent hours out there playing, we also had the fields and common behind us. Lots of nature to enjoy.

On Fridays there was no nursery, so we would meet up with my daughters cousin, who is my age and has become a friend, and her daughter who was a similar age to mine. We took them trampolining and sometimes to a place that let them ride ponies and groom them.

Hind Sight

Sometimes I wish I could go back and do it again with the knowledge I have now, If I had known I was Autistic I could of made accommodations, planned and done things differently. It was a difficult time.

I felt alone quite a lot during the toddler years, now I have some mum friends, friends I am able to connect and talk freely with. But, it took time for that to happen and for me to get to know them and feel less awkward. I am grateful to them for hanging around and seeing passed the communication differences.