Autism and Anxiety – An Awful Combination

Another school morning and another anxiety filled hour for my autistic daughter. Her life is filled with rituals, fears, worries and restrictions and nothing is getting easier. She has autism with generalised anxiety and the combination is awful.

It all starts with how she wakes. (Well actually it starts even before then because she often has nightmares.) She immediately has to check that everything is how she left it before she fell asleep. She has to have certain comforts in bed and they are all lined up just so. If anything has moved while she slept her anxiety becomes extreme.

“Mum, someone came into my room again last night!”

“Mum, I can find ….I need you NOW!”

Things must never change. Nothing can ever be moved. That’s her rigidity due to autism but then the anxiety kicks in when something changes and her whole world spins out of control before she’s even out of bed.

Anxiety, autism and sensory issues then affect what she will eat (usually the batter from chicken nuggets for breakfast because she has AFID (avoidance restrictive food intake disorder) and will only touch a select few foods.) Clothes have the same problem and I am down to just three pairs of school trousers she will accept and two polo shirts. I have no idea what I would do if my washing machine ever broke! Socks cause huge anxiety but going without them causes even greater anxiety again. She can’t cope with school shoes so she has trainers.

Then she has her rituals every morning. Set things must be fully completed before she can leave even when time is short. Cries of ‘mum have I got time for…’ can’t actually be answered with a no or she collapses in a heap unable to function. Her mind has so many open boxes that must be closed before she can step out the door. Leaving any open means her day will be preoccupied by one unclosed box and she can’t move on. She can’t ‘just ignore it’ or ‘forget it for now’ or ‘do that later’ because autism and anxiety don’t allow for that.

She has to please everyone. Homework must be done to the letter. Missing a night isn’t an option because anxiety tells her her teacher will somehow know and reprimand her. Her own conscience condemn her because she has to be perfect.

Even before she gets into school she must be first or second in her line because otherwise in her mind she is late. Anxiety makes her thoughts irrational but autism prevents her seeing it that way. Autism then distorts how she perceives the world and those around her then anxiety tells her she’s useless, foreign and not wanted. It becomes a vicious circle controlling everything.

She can’t break rules for fear of being shouted at. Fire drills sent her anxiety spinning because she has to go outside in indoor shoes and without a coat, two rules that she can’t break due to her anxiety and autism. Being outside at the ‘wrong time’ sends her stomach in knots for weeks afterwards. No amount of social stories or reassures help.

Every day is exhausting. Anxiety exhausts her as she lives on her nerves never feels adequate or good enough or perfect enough. Then autism tells her this will never change and that everyone looking at her is doing so because she’s done something wrong.

Autism affects her ability to communicate then anxiety prevents her overcoming this.

Autism affects how she understands social situations then anxiety makes her feel the world is better without her.

Autism means she must obey the rules then anxiety makes her fear for the consequences of being unable to do so through no fault of her own.

Autism makes her vulnerable then anxiety means there’s nothing I can do to change that.

Autism Is a lifelong communication disorder affecting how she communicates, thinks, understands language and interacts with others.

Anxiety is worrying, unease and fear about the unknown.

Together they are crucifying my daughter and so many others.

There is no cure but that doesn’t mean I give up trying to help her.

My daughter is beautiful, kind, caring, compassionate and smart. If only the awful combination of autism and anxiety left her alone others could see her potential and love even more.

Six Years On: How Has Having A Diagnosis Of Autism Helped?

According to my Facebook memories it is exactly six years today since my daughter was diagnosed. She was 4 at the time and had been going through the process of diagnosis for over a year by the time her appointment came.

I recently heard a parent of a child suspected of being on the spectrum say they would never look to get their child diagnosed as they didn’t wish them to ‘be labelled.’

So how has having my daughter diagnosed helped?

Firstly it helped HER.

This is by far the most important point. My daughter is able to accept herself, understand herself and find her ‘tribe’ by having an identity and knowing that while she may be different she is far from alone. Her mental health was one of the biggest reasons I sought for a diagnosis. There is no shame is being autistic and I seek to promote her autism as part of her wonderful, unique and beautiful personality. It is who she is and she embraces that.

Secondly it helped HER EDUCATION.

By having a diagnosis her anxiety is recognised and supported. Her selective mutism is understood and not ignored. When she takes language as literal teachers can see she isn’t being cheeky or naughty but it is a genuine processing difference. Her social differences are understood and can be supported. Her strengths can be celebrated and her struggles supported. Sadly without a diagnosis some services could not be accessed and therefore support could not be put in place. Having a diagnosis brought patience, understanding and help that she would otherwise have missed out on.

Finally it helped ME.

I am still the same parent I was before but now my mental health has improved making me a stronger and happier person. We are too quick to forget how much parental mental health can affect families. When parents feel they are to blame for their child’s difficulties, anxieties and struggles they become defensive, depressed and isolated. Unfortunately parent blame is rife without a diagnosis as it is assumed the child is struggling through poor parenting. This is very rarely the case but it has destroyed so many families when diagnosis is delayed or withheld. I am more able to embrace my child, celebrate her and enable her because I understand her better and no longer carry the burden of guilt that I am to blame.

Naomi’s diagnosis report is very different to the child she is five years later. Her autism now manifests in very different ways but she is still autistic and both of us celebrate that fact daily.

Autism hasn’t stopped her succeeding, in fact in many ways it has helped her. She’s a rule-abider, people pleaser, unique and funny individual who accepts her own quirks and is happy being herself. She has struggled and even added ‘extra’ diagnosis over the years including an eating disorder but in the six years since her autism diagnosis she has won several awards, been on prime time TV, fought and won for a disabled swing in the local park for her brother and even written some incredible blogs about her own struggles.

Would I still want her diagnosis today if she wasn’t already? Absolutely!

Diagnosis isn’t anything to fear, it’s a key that helps you understand and access support. It doesn’t define your child it just enables them to be free to be exactly who they are.

If you are worried about your child’s development do seek advice from your GP, health visitor or child development team. It is in everyone’s interest to support and diagnose where necessary.

What My Ten Year Old Taught Me About Learning Difficulties

A few months ago my ten year old daughter said something that changed the entire way I look at learning difficulties. I hope it will make you think too.

I remembered it was a Wednesday because that’s the day that clinic is always on. I had picked my daughter up early from school as she had an appointment to see a specialist. My daughter attends mainstream school where she is thriving even though she is autistic, has an eating disorder and anxiety. Coming out of school for appointments is a regular occurrence and this specialist was one she had been seeing for six years. I wasn’t expecting anything significant to happen as that day was just a regular check up.

I was right; the check up went as expected and there was nothing significant to report…well nothing significant about the appointment that is.

What I didn’t expect to happen was the conversation in the car on the journey there. Who knew that a ten minute conversation could leave a lasting impression that has radically changed my thinking!

The journey started off quietly. My daughter is so anxious in school she doesn’t speak (a condition known as selective mutism) and sometimes if I pick her up from school during the day it can take a few minutes before she chats freely. I always carry on and let her talk when she feels ready, if she even wants to that is.

I pulled out of the school car park and headed to the clinic. I was at the second set of traffic lights when she started talking. Out of nowhere she asked a simple question:

Mum, do I have learning difficulties?”

As I drove I answered her question as honestly and as simply as I could. I have a background in teaching and thought I had a good knowledge of what learning difficulties is so I told her that we usually class learning difficulties as a struggle with academic things like maths, reading, writing and understanding what people say. She thought about that for a brief moment and then checked her own understanding by listing a few children she knew from her class, also including her own brother who attends a different school and who has severe non verbal autism, who she thought fitted this description. Knowing her class well from volunteering in her school I was able to confirm to her that, yes, all the children she had mentioned, including her brother, did in fact have learning difficulties.

As I concentrated on the road ahead I wasn’t expecting her next comment at all.

Mum, I don’t like the name learning difficulties.

I had to ask her why. She was ready to answer right away.

“Well I struggle with some things but people think I am clever just because I can read and write, but all those children I mentioned are clever too. I mean my brother can use google street map, My friend knows loads about superheroes and my other friend is great at building Lego. So why do people say they have learning difficulties just because reading or counting is hard. That’s unfair.”

I was so glad I was just pulling into the parking at the clinic because what she had just said was so powerful I needed her to say it again.

‘Naomi can you say that last bit again please?’

“Ok mum. Why do people say my friends and my brother have learning difficulties just because reading and counting is hard for them. I think that’s unfair. Don’t we all struggle with something?’

I let her words sink in before I even turned my engine off. I couldn’t actually believe that I had never thought about it that way before.

It took my ten year old to shake up my beliefs. She doesn’t see any of her friends, or her brother, as different. She recognised that everyone struggles with something, after all even though she could read and write and count well here she was attending a clinic because of something she struggled with. Why wasn’t her issue classed as learning difficulties when her friends and brother’s struggles were?

Children can teach us so much if we let them. What my ten year old taught me about learning difficulties is something I will never forget.

It isn’t fair to judge anyone by their struggles when every single one of us struggles with something. We really aren’t any different to anyone else.

Thats powerful. I had no idea my ten year old could be so insightful.

Autism: When Mid-Spectrum Often Means Misunderstood

My husband has autism.

My son has autism.

My daughter has autism.

They are all very different yet very similar.

My husband is considered ‘high functioning’. He can drive a car, shop on his own, has lived independently in the past and been employed. He was not even diagnosed until 59 such was the level of his functioning. He, of course, still has his struggles but to many at first glance these are not obvious.

Then there is my son. His autism is extremely obvious and he would be known to many as ‘low functioning’. He has no spoken language (non verbal) and is not potty trained at 9. He requires 24-7 support and will always need this throughout his life. He has significant learning difficulties and can not write any letters or numbers nor can he read. His cognitive function is that of a baby in most levels and at best a child of around 18 months though his physical body is 9. He has other co-morbid conditions too including the genetic donation NF1.

Then there is Naomi. Mid spectrum and misunderstood.

Not severe enough to get on-going support.

Not severe enough to receive speech and language.

Not severe enough to have any legal educational support plan.

Not severe enough to be entitled to 1-1 support at school.

Not severe enough to get a placement out-with mainstream school.

Not severe enough to be able to access Occupational Therapy.

Yet:

Not high functioning enough to manage without ongoing support.

Not high functioning enough to not need speech and language. In fact as a selective mute child she desperately needs support!

Not high functioning enough to be coping without a legal support plan yet this seems to be a never ending battle to convince education!

Not high functioning enough to manage all day every day without 1-1 support, although she is being forced to as no-one seems to see her struggles!

Not high functioning enough to manage in mainstream fully yet there is no other options available. She is in the strange position in that mainstream is right for her 75% of the time yet there is no support for the times she really struggles.

Not high functioning enough to get occupational therapy despite still struggling with everyday skills everyone else in her class is able to do with ease.

So she is left. Misunderstood and ignored.

What about all the thousands of children with autism who have no learning difficulty but have mental health struggles by being made to fit into a round hole when they are not round? What about the children able to mimic and hide themselves within a mainstream class but who still have massive sensory issues and social struggles?

What happens? Let me tell you in my experience what happens to these ‘mid spectrum’ kids:

Their mental health suffers from being misunderstood and being expected to be ‘normal’.

They become masters of the ‘hold it together’ club and then explode at home from not having the necessary support needed all day at school.

They lose confidence as they struggle to make and maintain friendships without anyone able to help them.

Some develop challenging behaviour as a result of coping with demands to not be autistic all day.

Some go on to feel ashamed of their autism yet they are not ‘high functioning’ enough to be able to hide their traits.

A growing number are now leaving mainstream school and being forced to be home educated as there is nowhere else suitable for them.

Many ‘fall through the net’ and by the time they reach teenage years they are lost in the system and even more misunderstood.

Not everyone with autism is able to be like my husband and make it through life without strangers noticing anything different (I say strangers as anyone close to my husband is able to see his difficulties) Equally not everyone with autism has learning difficulties or is non verbal.

Most people with autism lie in the invisible, misunderstood area, known as mid spectrum. It’s sort of like having one foot in one world and another foot in another world. Sometimes their autism is obvious, sometimes you would struggle to see it. Sometimes they are comfortable being with neurotypical people (those of us not on the spectrum) and sometimes they are much more comfortable being around their autistic peers.

Caught in the middle.

Very much autistic but able to (sort of) live in a neurotypical world for periods of time.

Mid spectrum autism: for many that can be summed up as misunderstood.

What Happened When A Child Refused To Have My Autistic Daughter In Her Team


It’s two days before sports day at my daughter’s school and gym lessons are all about practicing for hurdles, sprinting and egg and spoon races. The children are excited, eager and raring to go…all except one child who finds any sport a challenge.

She is small, quiet, slow at running and finds balance and jumping difficult. She has fallen too often and takes longer to master even the most basic of physical skills Everyone in her class knows this but today it seems even more obvious.

The class is divided into teams to practice the skills. Although no mention of competing, timing or winning is even said the children somehow know this is practice for the big day when trophies and awards are given out. The teacher numbers the children and sends them to their respective areas.

And then it happens.

Miss can I swap groups?”

“Does she have to be in our team?”

“It’s not fair we always have her!”

“That’s it! I’m not taking part if she’s on my team!”
And at that one child walked off, refusing to take part in the lesson simply because my autistic daughter was on her team. 

My 8 year old won’t tell me how she felt about that but I can image. As her mum I want to cry. My daughter may struggle with social awareness at times but even she totally understood she was not welcome or wanted and she knew exactly why. 

She knows she is different from her peers. She knows her physical skills are delayed and that she often needs adult help to participate, yet every week she tries her best. But how much can one child take?
What would you do if you knew no-one in your class wanted you in their team? 

Naomi ignored them. She carried on as if nothing had happened while the other child sat and watched. She needed assistance at the hurdles and at anything related to using balls but then as the teams moved around activities the teacher noticed something very special.
When Naomi’s team came to sprinting they were a child short on her team. The child who finds running hard took it upon herself to not only run for herself but also on behalf of the very child who had refused to join in because she did not wish to be on a team with my autistic daughter! The teacher cheered her as she pushed herself to not only run twice for her team but also do several other tasks twice over because her team was a child down.

There was no race to win today. There were no prizes. The actual sports day is not for another two days yet. However, when I collected my daughter today her teacher called me back to speak to me.

She never told me about the child who refused to join in because my daughter was on her team. Instead she told me how proud she was of my 8 year old who excelled herself in the sports class today on so many levels.

It was my daughter who told me what happened with the other children and how one girl refused to join in because Naomi was on her team.
How silly was that mum! She thought she had no chance of winning because I am slower than others but you will never win anything unless you try.”

I don’t need to be upset about the fact my daughter was bullied today because she is different. I am not even angry the child was allowed to sit out just because she felt so aggrieved at having to do sports in the same team as a child who struggles.

My daughter proved today she is much greater at sports than anyone realised. She showed sportsmanship, team work and resilience beyond her years. What she lacks in physical ability she made up for in strength of character.

Too often we look down on others because they seem weaker or less able.

At bedtime tonight my daughter summed up her day like this:

“It was good mum! I tried my best and did extra when I could to help. That makes me a winner…right?”

Yes it does!

My child became a winner…that’s what happened the day a child in her class refused to have my autistic daughter in her team! 

Sometimes the hardest lessons in life show us what we are truly made of.

I hope the child who refused to join in today has learnt from my daughter. I know I have! 

Sometimes it all gets a bit too much

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I took this photo of my daughter recently in a busy shopping centre. It had all just got a bit much for her.

The noise of so many voices. The smell of so many different foods combined with the smell of people and everything the shops were selling. The brightness of the lights. The sense of dizziness as we walked in and out of different shops that were different temperatures, had different flooring and so many colours all around her. The constant thud of feet walking on the tiled floors. The bombardment of music and announcements. The lack of personal space in busy lifts and shops.

She could not wait to find a seat. She could not go on any further. So right where she was she sat down silently.

I left her sit alone at first. But after a while I sat right beside her. At first she was silent unable to even voice how hard it all was for her. Eventually she just said it was all a bit too much.

I may not have autism but I can so relate to that feeling too.

When she was ready we both got up and headed home.

I didn’t have to take a photo of her that day but I did it for two reasons:

Firstly I want to remember what happened so that I can try and help her before it gets to this stage again. As the shops get busier leading up to Christmas and the music, smells, and lights all get even greater I want to be able to keep a close eye on my daughter before it all gets a bit too much for her. It is my responsibility to pick up on her cues and notice the signs that things are stressing her. Perhaps I can learn from this powerful image and prevent her being so overwhelmed before we reach that point of freezing again.

Secondly I took the picture that day because seeing her on that floor while the whole world carried on made me realise something so important: sometimes we forgot that in the busyness of our lives others are struggling right in front of us. While I kept a close eye on my daughter that day my eyes were suddenly opened to the elderly man who was sitting alone having a coffee and the young mum struggling out of the nearby lift with two small children. From the look on their faces and their body language they both looked like it was all a bit much for them that day too. I vowed then and there never to be too busy to not notice when others are struggling right in front of me.

Once home I showed my daughter the photograph I had taken and asked if I could use it on this blog. ‘Yes’, she said ‘but tell people I am ok now. It was all a bit much but it gets better.’

My daughter realised she had sensory overload. Things had built up so much that morning that she needed time out. It happens to everyone sometimes.

Take time to sit alone in life. It is nothing to be ashamed of. A little time out is something we all need now and again. Perhaps someone will even sit beside you and support you though it too. I really hope so. No-one should be alone when it all gets a bit too much in life.

This post first appeared on Firefly

So she’s going to the mainstream

This time last year I was eagerly awaiting news on where my son would be going to school. We had no fight to get his name forward to the council as a child who would not be suitable for mainstream school, but we later had to fight to secure the right school placement. This week we had his second parents evening and he has settled well and is achieving within the right environment. We chose to defer twin sister Naomi from starting school as she was not yet diagnosed and a year could make so much difference to her development.

So here we are a year later. Naomi has grown in confidence, cognitive skills and comprehension and has much more understanding and awareness than last year. But she is still struggling (and always will) in areas affected by her autism diagnosis and also in her physical and independence skills. She is also doubly incontinent too. I have fought unsuccessfully for her name to be taken forward to the council as a child who would benefit from specialist education. Places are so limited and more and more children with autism are expected to attend mainstream schools.

At this present time the only advantage to this is that transition to school can start early. And that is very much a positive for a child with huge anxiety like Naomi. So last week it all began.

The Head Teacher, alongside the home/school link worker came to visit at home and gifted Naomi a school bag and a sticker book.

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And as a thank you Naomi made a card in return:

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I walked Naomi to the school to give them the card and we were able to talk to the office staff and the janitor. Naomi took a book with her and the staff took time to look through this with her. I have to give the school credit for this. And while I have reservations about wether the school can really meet Naomi’s needs, as her mum I will endeavour not to pass these concerns onto Naomi. She needs me to be excited for her in this new adventure. She needs me to support and encourage her and to help her understand this big change.

It’s a bit like one of her favourite bedtime stories ‘we are going on a bear hunt’ where it all becomes a big adventure yet the whole family still feel scared when they finally meet the bear. Only we won’t be running away. We will be facing this together, praying that this really exceeds my expectations and she excels there the same way her brother is excelling in his own way in his specialist school.

Talking of the bear hunt…here is my thoughts on her going to mainstream to the song of ‘we are going on a bear hunt’

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared look at all those children!

Oh yes! A visit from the Head Teacher
She could have brought a pencil, she could have brought a tie
She bought her a school bag!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared, she has an IEP?

Oh no! The IEP from nursery doesn’t count in school!
We call another meeting, lots of people talking
The school will write a new one

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared my daughter still wears nappies!

Oh no! They haven’t got a changing room
She won’t get 1-1, but she’s gonna need assistance
I can see some problems!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared there’ll be plenty of transition?

Oh no! She’ll be treated like the others!
We won’t know who’s her teacher, they’ll be no-one from her nursery
And they wonder why she’s anxious!

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared, she has asd!

Oh yes! Another visit next week
I’ll need to work with them, we’ve secured a csp now
They know my name already!

She’s going to the mainstream
It’s gonna be a big thing
I’m not scared it is just around the corner

What? The uniforms are in the shops? Quick! Let’s look at the photos of the staff again, let’s reread every book on starting school ever written for kids, try on the new jumper, pack the school bag, get the packed lunch ready….oh it’s only March!

Why do I still get scared at her going to mainstream?

Let’s hope my concerns are all proved wrong.

Hopefully this time next year I will look back on this blog and wonder what all the fear was about…