Why It Appears I Let My Autistic Son Get His Own Way

As usual my son is the first to wake up. It feels like I have only just got to sleep. I probably have. As he makes his way downstairs he switches every light on he passes, takes a handful of teddies with him and finally settles down on his chair with his two iPads before screaming for the TV to go on. His presence defines the household. His demands can seem relentless and his screaming earth shattering.

To almost anyone who reads about him, comes into my home or works with him, the impression is the same: I let my autistic son get his own way.

What people see is just the tip of the iceberg and the reason I am writing this post is to show that what can seem on the surface one way isn’t always the case.

My son is ten, he has severe autism. He has no spoken language. He has epilepsy. He has a progressive genetic condition. Most importantly for this post he also has something known as violent and challenging behaviour.

Violent and challenging behaviour in children with additional needs like my son is much more common than people realise. The reason is simple: people don’t talk about it. There is a shame that comes with it, as well as judgement, embarrassment and fear.

My son used to injure me. He would kick, punch, pull my hair, bite, destroy things, scream, harm himself and throw anything he could get his hands on. He was frustrated, angry and violent, both to others and himself. I couldn’t ‘have words with him’ as his understanding was (and still is) that of a one year old. He had no concept of being grounded since he never left the house without me or went anywhere and taking things off him proved counterproductive as he made absolutely no connection to the removed item and his behaviour.

I needed to understand him better not punish him. I needed to realise what was driving his behaviours, even when he couldn’t tell me.

His behaviour was similar in school and home so this wasn’t simply a parenting issue or an education issue, this was a behaviour issue that needed addressed consistently and with a lot of patience.

So what changed?

Well firstly I realised my son wasn’t being controlling. He was anxious.

He wasn’t being hurtful or selfish when he injured other people or property, he was dealing with emotions he had no idea how to cope with.

He was confused, upset, had unmet sensory needs, frustrated at an inability to communicate and be understood and he showed this in the only way he knew how.

Behaviour is one of the biggest and most effective ways we all communicate.

He needed things to change and that change started with me. I put in place a very low arousal home life. To the outsider it may look just like my son gets his own way but realistically we are actually all getting our own way instead because the entire family is now safe, our property is safe, and most importantly my son is safe.

My son does get to wake when he wants, watch TV when he wants and choose his meals. He has access to his iPad from the moment he wakes and when he wants a bath I bath him.

People can think what they like but by responding to his natural body clock and going with the times that suit his natural rhythm he is calmer, happier and more settled.

By allowing him to watch the TV he wants I am actually calming him as he uses the schedule of a well know children’s channel to know when his school transport is due, when it is time for his bath and when mealtimes happen. This eases his anxiety and helps him make sense of his world.

By letting him choose his meals he feels much more in control and less anxious as he then knows not only what is coming but when it is likely to come too. Surprises make him anxious, and therefore more likely to be violent.

As for the iPad: well it turns out this is his very means of communication, his voice so to speak, and without this he has no means of showing me what he wants or even if he is unwell. To deny him that is taking away the very tool that allows him to be understood.

Then there’s the bath: this is fundamental to his mental well-being and triggers him to know it is time for winding down for bed. By making this a time for arguments or battles because the time wasn’t convenient for me was one of his biggest triggers for his behaviour. I was inadvertently saying to him that it was my way or no way, which made him feel invisible, out of control and helpless.

Low arousal for us is about letting my son know that he is understood, loved and accepted for who he is. This is his home and he needs that place of sanctuary and escape to be able to recuperate and relax in order to face the world. He needs to feel like his needs are met and that the atmosphere is one of calm and love not anger and frustration.

Many would say I am doing him an injustice by allowing him to ‘have his own way’. The argument is that in the ‘real world’ this is unrealistic. I understand that totally but my child’s ‘real world’ isn’t going to be about an employer, a spouse and following the rules of the road as a driver. My son will have carers, support workers and respite staff and it is vital that they are not attacked in the way I used to be.

Low arousal isn’t about letting your child dictate. It’s about understanding, listening, responding and meeting the needs of our most vulnerable children when they need it most. It’s about responding to the communication that the challenging behaviour and violence actually is and recognising that a child is struggling and needs help.

You might see a child appearing to get his own way. I see a child who is understood, calm and happy.

Until you have lived through what I have you may never understand. I don’t judge you for that, I just hope you never have to experience it.

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Who Will Fight For The Rights Of Less Able Autistics Like My Son?

This week the autistic community achieved something quite incredible. News began spreading earlier this week that a large government body had changed the wording on their site that said that anyone diagnosed autistic was now forced to inform the driving and vehicle licensing agency about their diagnosis potentially risking their driver’s licence.

The autistic community responded to this and rallied together defending their rights incredible well. They tweeted MP’s who battled for them, they started petitions and shared them everywhere, they made sure the leading charities supported them and they even looked into the law on the matter. As the wife of an autistic man who drives daily, and who I even taught to drive, I found it heartening and wonderful to watch a community come together and demand action. Days later the wording was changed back to its original wording that means autistic drivers, like those with any other condition or disability which could potentially impact on driving, only need to inform the agency if they feel their autism would affect their driving. Brilliant news indeed and a massive win for the rights of autistic drivers.

However, despite having an autistic husband who has been driving over 11 years I was very quiet online about the campaign even though I fully supported it. (I did sign the petition obviously.)

There was one simple reason for my silence and that was this:

It was great to see the autistic community defending themselves, and rightly so, but would the same autistic community, and society in general, be so outraged and campaign so valiantly if the violation was against the less able autistic community like my son?

I can’t help but think who will fight for my son’s rights?

Will his fellow autistics or those in society defend him, write petitions to ensure he is protected and contact members of parliaments about things that affect him? Will the public be so outraged and vocal about things that affect his rights? Would campaigns for the less able autistics get as much media coverage?

One thing is certain: my son will never be able to advocate for himself. He has no ability to speak, diagnosed with co-morbid learning difficulties and epilepsy and developmentally a young baby. Yet still every bit as worthy as a human being.

This week autistic drivers defended themselves. The very fact this group passed the drivers test, many having had to also pass a theory test too, proves a level of cognitive understanding and ability that makes them capable of self advocacy and defending their own rights well. I’m not a huge fan of ‘functioning labels’ but the very ability to drive means the group targeted have a level of awareness and understanding that my son will never reach. This in turn meant they could rally so much public support.

My son won’t ever be able to vocally speak up for himself.

He won’t be able to tweet anyone to come to his aid.

He won’t be able to start or even sign a petition. He likely won’t even know what one is.

He won’t be able to lobby for change.

I 100% stand by and support what was achieved this week but I also can’t help but wonder would we be so outraged as a country, as a community, if an agency violated my son’s rights like happened this week?

You only need to look at campaigns and petitions for things like making sure the police are trained in autism to help protect the most vulnerable autistics, campaigns against autistics being held in assessment and treatment units for mental health patients, campaigns to stop unnecessary force when dealing with autistic children and young people with learning difficulties and/or challenging behaviour, and even campaigns for the dignity of autistic children like my son to have suitable ‘Changing Places’ bathrooms with a hoist and a bench, to see that such campaigns need more support both from self advocates and society in general. What are the charities, celebrities, members of parliament and media doing to support campaigns such as these which are and do affect less able autistics like my son?

I advocate on my son’s behalf but many in the autistic community find that offensive saying my son needs to be enabled to advocate himself. The fact is he won’t ever be capable of that level of awareness or understanding. I have to be his voice. Until the day I can no longer do so I will fight for my son’s rights as a human being, child and eventually an adult. I will do everything in my power to see him respected, treated with dignity and be understood.

I just hope that if the time ever comes when his rights need defended that others within the autism community, and in society as a whole, will come together and stand up for him in the same way they stood up for themselves this week.

He’s autistic too, even if he won’t ever work, pay tax, raise a family or even drive.

He’s still every bit as worthy, valuable and he should have just as much rights.

If we say we support the rights of autistics are we fighting for the rights of the less able as much as for those who can advocate well themselves?

Will you stand with the less able autistics like my son?

The Importance Of Telling Your Autistic Loved Ones ‘Don’t Ever Change’.

The day my son was diagnosed autistic I broke my heart. He was almost four, had only just started walking, had no spoken language and he was very developmentally delayed. I wanted to do everything possible to ‘make him better.’ I wanted to change it all.

16 months later, in a different clinic, I took my daughter to be tested for autism too. I sat solemnly while the paediatrician and specialist speech therapist listed all the reasons they felt she too met the criteria for diagnosis. I didn’t cry but I did feel concerned about her future. I wanted to change the thought that she might struggle.

Five years later I sat in another room, in another city, with another speech therapist and a psychologist as my husband received his diagnosis. This time I wanted to change his past, prevent the years of misunderstanding and bullying and the subsequent depression it left him with.

It hasn’t been easy for me to accept and embrace the fact that, all except myself, my entire immediate family are all autistic. I can see looking back how I consumed myself with the need to help them communicate, help them socialise, and help them adapt to even the simplest of change. I was tying myself in knots and exhausting myself. In my attempt to help them I was inadvertently telling them they had to change.

Now it IS good to empower autistic people with the right tools and support to succeed in life. It IS right to encourage, help and teach them. But what we mustn’t do is force them to change the very being of who they are.

As my children grow and shine in their different ways, and my husband processes his own diagnosis, I am doing my best to help them embrace and celebrate their own uniqueness. I came across this simple post in a Facebook group posted by an autistic adult friend of mine called Joseph. His three words are what I want to say to my autistic loved ones.

‘Don’t ever change.’

Isaac won’t ever really understand what that means. His significant learning disabilities give him such a pure and simple outlook on life. While his care needs might be high the core things that bring him joy and pleasure are quite basic. He loves his food, his same bedtime stories every night, lifts (elevators), his bath routine, looking at photographs on my phone and soft play. I took him to soft play recently and watched with pride and overwhelming love as he flapped contentedly to himself unaware of anyone around him. He doesn’t care what anyone thinks of him, he lives each day like it’s the best day ever and he loves deeply. Why would I want to change any of that? He’s amazing exactly the way he is.

Naomi is at an age and developmental stage where she is much more aware of her differences. While her peers attend clubs and groups, play popular video games and play outside she is still happy to line up little plastic toys and immerse herself in her own make believe world. Her literal interpretation of language brings me so much joy as she, quite rightly, reminds me to say what I mean and not use ‘funny phrases’. Her thoughts on life astound me and her ability to empathise and care are incredible. Yes, she admits herself, that she finds some things harder than others but then she’s the first to tell me ‘everyone is different and we are all good at different things.’. She knows she has autism and she isn’t ashamed of it. She’s exactly who she was meant to be and any issues regarding that are for me to work through, not her. Would I really have wanted her any other way? She’s wonderful exactly as she is.

My husband’s autism looks very different to the children’s. He has spent his life trying to change and adapt, fit in, be included and be accepted. The world has tried to change him for over sixty years and as a result he felt ashamed, different, and stupid. Seeing the mental and physical scars he now lives with as a result of this makes me even more determined that our children need to feel loved, accepted and wanted for exactly who they are.

Therapies have their place. Strategies to support have their place. Teaching and practicing social skills have their place.

However we also need to teach our autistic loved ones that they are accepted, loved and amazing exactly as they are.

They need to hear the simple truth of these three words:

‘Don’t ever change’

Breaking seven years of silence: how a mute ten year old found a way to let her voice be heard

I asked my ten year old if I could share this story, because after all it is her story not mine. She answered emphatically ‘yes’ adding that ‘make you you say that ‘everybody’s voice needs heard mum’ So I’ve made sure to get that bit in first.

So let me give you some background:

This is Naomi, my daughter. She is a twin with her brother having very complex needs including severe autism, epilepsy and severe learning difficulties. He can not speak verbally, which makes her statement about ‘everybody’s voice needs heard’ even more significant and powerful. Naomi herself is also diagnosed autistic with a further diagnosis of anxiety and an eating disorder. She also has a condition known as selective mutism: in many situations Naomi is so overcome with anxiety she is mute.

One of the places she has always been mute in is school. She started education at just two and a half and when she was first enrolled in nursery they didn’t believe me when I said she had a wide vocabulary and spoke clearly. She showed no signs of that in the nursery setting and in her two and a half years at two different nurseries she never once spoke a word: not one single word. She never sang a nursery rhyme, never answered a question and never even spoke to any other child. She smiled, cried and took part in some activities but she just never opened her mouth. By four she was formally diagnosed with the speech condition selective mutism.

At home she continued to gain language quickly and used it confidently. Her voice was clear, strong and beautiful and it was hard to imagine the idea that no-one else was able to hear this.

Naomi started school at five and continued to go all day at school without speaking. While her school were very inclusive and supportive, despite all sorts of inventive ways of easing her anxiety, Naomi continued to find it too difficult to speak. She did have one friend and by her second year in school she slowly began to speak to her one friend, though only outside of the classroom walls, primarily in the playground. This was only by whispers so that no-one else could hear.

She would tell me that she wanted to speak but whenever she opened her mouth the words just didn’t come out. She said it was like they just disappeared. She learnt to adapt to a life of mutism is school and her peers gave up on trying to get her to speak by half way through year 1.

Nativity plays came and went, as did class assemblies, but she could never have a speaking part. I knew she could speak but I seemed to be the only one. It was like we had this secret life at home where she would talk away but outside the home her voice disappeared and she lived a life of silence.

She would be given reading book after reading book yet whatever teacher she had they never once heard her read. Her year 1 teacher hoped her year 2 teacher might find the key to open her up. She didn’t. Her year three teacher was fantastic, but still Naomi was unable to speak. Her year four teachers had no luck either. No-one failed, it just wasn’t to be. Naomi wasn’t ready.

Naomi would often say how she would like to answer her friends, or join in games or read in class but mostly she just became used to the fact ‘I don’t talk’ and it became just how it was. Then one night three weeks ago she came out of school and I knew something was wrong. She cried the whole walk home. She cried most of that evening and the next night and the next night too. It was the week before Burns night, a traditional celebration in Scotland of a well known poet. Schools often mark the occasion by having children recite Scottish poems and Naomi’s school were no exception. This was Naomi’s fifth year of having such a task, every year prior being met with ‘I don’t talk’ and that was that. But this year something changed: Naomi loved the poem so much she wanted to memorise and recite it like her peers!

She actually wanted to speak!

But wanting to speak wasn’t enough. She still could not bridge that mental and physical gap. She couldn’t overcome her all consuming anxiety. That was the cause of the tears: the conflicting desire of wanting to do something so badly but knowing she couldn’t.

It was heartbreaking.

Then one morning I had an idea. I suggested it to Naomi and her tears turned to excitement. When the class were asked to chose a partner to practice their poems with and no-one chose her she just sat alone silently learning the poem to herself. She knew why her peers hadn’t chosen her and she wasn’t upset at them.

Naomi practiced. I practiced. I felt like our secret was closer than ever. Together we had a plan, though I had no idea if it would work.

Then three weeks ago, on Monday 21st of January, the night before my birthday, Naomi and myself performed that poem as if we were on that stage at school. Naomi was relaxed in her pyjamas in her own room. She spoke clearly and confidently having spent hours memorising the task by heart. On the chair in front of us was my iPad and I pressed record.

As we watched it back Naomi smiled and said simply ‘I did it.’

I asked if I could send it to her Head Teacher. She agreed and requested I also share on my Facebook page. But she wasn’t ready for her teacher or her class to hear her yet.

The next morning she woke and announced suddenly ‘Mum, I would like my teacher to hear my voice now. Can she see the video today?’

So I took her to school five minutes early and her teacher watched the video directly from my iPad. She unashamedly cried. She asked Naomi if she wanted the class to see it. Naomi smiled and nodded.

The following day, on Wednesday 23rd January 2019 a class of nine and ten year olds in a school in Scotland witnessed something very very special. As the pairs of children in turn recited their poems to the class and Naomi sat in silence cheering them on, the teacher ended the session with a little clip that changed everything.

For the first time in five years Naomi’s classmates heard her voice for the first time ever, as she casually and effortlessly recited the same piece they had all been learning, via a video playback of her recording at home.

Some children watched open mouthed, some cried. Every single one cheered and many hugged her.

Two days later, with Naomi’s approval, the Head Teacher showed that video to her entire school. Naomi told me staff and children were in tears.

Naomi gained every award going that week: star of the week, Head Teacher’s award and even an invite to have hot chocolate with the Head for going above and beyond!

Two weeks have since passed. Naomi is still selective mute. She’s still very anxious and still autistic. She hasn’t spoken yet in class directly or to her peers.

But they, and now the world, know that she can.

If and when she is ready she may one day speak in person. There is no pressure.

The fact is she did it. She broke seven years of silence in the only way she could. She proved that her voice counts. She proved she could.

Her message is strong and powerful and needs shared.

‘Mum, make sure you you say that everybody’s voice needs heard.’

She says it better than I ever could.

Here is that special video. Here is the moment my daughter broke seven years of silence.

Can You Be Severely Autistic And Still Have Empathy?

I admit I have had to get professional support to help me as a parent of a child with severe autism.

I didn’t expect to have a child who could not talk, or who would have severe learning difficulties or scream for hours. I was unprepared for the lack of sleeping, the rigidity of routine, the huge struggles to communicate and the life long high level of care he needs.

I also didn’t expect the professional misunderstandings either.

Please don’t judge me but in my endeavour to help my son I assumed that what these highly trained professionals were telling me was correct. Things like:

That behaviour needs stopped because it’s controlling.’

‘It’s extreme sensory seeking and you can’t let him do that!’

‘He needs to be taught strict boundaries.’

‘His behaviour is having a negative and destructive impact on his sister so you need to do somethings out that.’

‘It’s because he has severe anxiety and needs to be in control.’

‘You need to learn to accept he has severe autism and this is just how it is.’

Now I am not saying these are all wrong, or don’t apply to my son, but recently I have been thinking about my son differently though I had no idea how controversial my idea would be.

Could my severely autistic son’s behaviours actually be due to him being very empathetic?

My son has no functional speech. While he can say ‘mummy’ if asked to repeat it or asked a simple question he understands like ‘whose car do you want to go in?’, and he can say ‘no’ when asked simple direct questions using vocabulary he is familiar with, he can’t tell me why he does certain things or why he gets so distressed about other things.

For years people have been trying to ‘guess’ based on their knowledge of autism, or learning difficulties or sensory issues. I was told my son was locked in his own world, consumed with his own thoughts, controlled by anxiety and aware only of his own needs.

When I suggested recently I thought he was actually the loveliest, most empathetic, most caring little boy ever I was looked at as if I had lost the plot.

I shared with a mental health nurse who specialises in challenging behaviour, severe anxiety and learning difficulties the story last week of how my son woke up very early and was making a huge amount of noise and mess in the bathroom removing his myriad of bath toys he has to have in the bath, spilling water everywhere and waking everyone up. Of course I could predict that she suggested he had huge unmet sensory needs and I should try and incorporate more water play to his schedule. It was also suggested he had some type of clock in his room to master when he could get up so as not to disturb everyone else, and other ways to curb and mould his behaviour.

Then I suggested something radical:

I think my son was actually showing concern for others, wanting to help and showing love!

The previous evening I had went over the next days routine. It had started with his sister having a bath, something I knew my son struggled with. My non verbal severely autistic son wasn’t trying to sensory seek, or deliberately wake us all up or control everything: he was taking his toys out the bath to HELP because he CARES about his sister and thought about her the moment he woke.

I started to think about some other behaviours. Could those actually be because he cares deeply for others?

He screams if his sister has socks on when wearing pyjamas. Could it be he himself finds socks uncomfortable and doesn’t want his sister to experience that?

He becomes very agitated if I don’t remove mugs of tea or coffee or glasses of juice immediately after meals. Could it be he knows these could spill and he’s trying to protect us all from wet clothes and wet floors?

He has to be first in the house and first out the house every time or he self harms and screams. Could it be he cares about us all so much he is wanting to make sure everything is ok before the rest of us venture in or out?

He spent years becoming so agitated and distressed at open doors, mostly outside house doors that he felt should be closed? Could it be he wanted to protect others from intruders, the weather or noise? All things he himself struggles with so would naturally want others to be protected from.

He has to have a bath at 6pm regardless what else is going on around him. Could it be he is trying to help us all feel reassured and comforted with familiarity against a world of chaos? Could he be bringing predictability back to help us all feel calmer and more secure?

Of course I can’t say for definite if my interpretation of my son’s behaviours is true because he can’t tell me. However looking at things from the viewpoint that he cares and loves us all and wants to help us has been life changing for him and everyone else.

We used to joke in my house that life revolved around my son. His needs had to come first and we all had to learn to be empathetic and adapt to him. But maybe, just maybe we are doing children like my son a huge injustice.

Can you be severely autistic and still have empathy?

Can you be Scottish and still love English tea?

Why of course you can and the sooner we all realise that severe autism does not mean they only think about themselves then the better things will be for everyone.

Assume people care. Assume they are trying to help.

Always try and see the positive even if others tell you not to.

The Biggest Difference Facing Families Affected By Autism

I have seen so much on social media recently about the differences affecting autistic people, from their traits, their treatment, their support, and access to suitable education. The great divide between those who have loved ones with ‘severe’ autism often accompanied by challenging behaviour, significant communication difficulties and learning difficulties and those whose loved ones have one foot in the non autistic world and one foot in the autistic world, often feeling the need to mimic and mask risking their mental health.

Which of these groups need the most support and how they access that support seems to be a whole area of debate.

As a parent to one child whose difficulties are very obvious and another child whose difficulties are perhaps initially more difficult to spot I read with interest what other families in my country and further afield are experiencing.

In doing so I have came to this conclusion: The biggest difference facing families affected by autism isn’t actually how you experience life with autism but actually WHERE YOU LIVE.

Location matters, even more so when it comes to experiences with autism.

Despite national policies and laws on autism things are very different in different areas. Everything from your educational experience and support, access to CAMHS (child and adolescent mental health services), OT (occupational therapy) support for sensory issues and fine and gross motor skill development, support groups for families, access to speech and language, and respite vary from one part of the country to another.

This results in families feeling cheated, jealous, angry and frustrated as they hear of other children or adults getting support that they need just as much, sometimes more, yet can not get.

The geographical disparity across the country, often referred to as the postcode lottery, is failing families, failing autistics and failing professionals who are fighting for funding to provide a service they are trained and equipped to provide yet restricted by lack of funds and investment.

I asked a few families about their experiences of services and professional support throughout the country and here are a few comments. (Names and locations all hidden for protection)

With the exception of an initial visit from the Educational Psychologist as part of the initial diagnosis process, we have been denied all services at some point over the years. Even when sight loss occurred because of anxiety no services were offered.”

I have had a good service compared to many others. Had access to speech therapy although after cuts had to contact head of service and MP (member of parliament) to chase for more which was then granted. Seen OT but had to go private to see specialist that can actually offer help. Not needed camhs but hear its a nightmare to get. Directed to parent support groups for autism and given pre school support from asd service. I have parents in the same nursery as my child that fall under these LAs(local authorities) that have to fight every step.”

“We have a NAS (national autistic society) support group which have been a godsend. Plus the school my child is at puts on workshops which have proved really interesting. We were told speech therapy would continue in school but it hasn’t . They’ve had no speech therapists. One started in January so I’m hoping that means he’ll have access now.”

We were denied occupational therapy even though we’ve applied 3 times with other professionals recommendations.”

We were refused any support from wheelchair services due to not meeting their requirements for a government funded special needs buggy, despite our doctor asking them to reconsider. Their reasons were because his joints don’t dislocate and that he isn’t medicated daily. Obviously this didn’t help us in getting my 6 year old Autistic son, who struggles with pain from hypermobility, to and from school every day. Luckily for us, the parents at our sons school held a fundraiser and raised enough money for us to buy one ourselves.”

We have been denied any form of dealings with CAMHS even though my son kept threatening to kill himself at 8 years old. Not a severe enough case apparently.”

“Speech therapy; not denied but rubbish and one SALT left my house saying she couldn’t help my non verbal 4 year old!! Thankfully he gets a better provision via SEN school now. Occupational therapy – this is NOT commissioned when there is an Autism Diagnosis in my area.. We have gone private for assessments and reports. The only local authority OT we saw was the Disabled Children’s Team one regarding home adaptions. CAMHS – Had to fight for this but once ‘in’ with CAMHS Intellectual Disability they were helpful. Educational Phycologist – Assessed when my Son was 2 & refuses to re-assess now he’s 6. My area regularly breaches national guidelines on everything and services are so stretched it’s a fight to get anything!”

All these families have children with an autism diagnosis, all these children require support, yet the ability to access that support varies on something as fundamental as your location.

Could you imagine if the same geographical disparity happened with other health issues? Imagine you broke your arm in a fall and had to go to hospital for treatment. Would you not expect that treatment to be almost identical throughout the country, following a proven and approved pathway of treatment and follow up? Of course waiting times may vary depending on the time of day, weather conditions, how busy the hospital is and so on but basics such as an X-ray and painkillers should be standard wherever you went.

Most broken bones mend within six to 8 weeks. Autism is a life long condition yet diagnosis, support, education and life experience all vary not necessarily due to the individual uniqueness of each person but due simply to your postcode.

One non verbal five year old may have access to speech therapy, respite, have one to one support in a fantastic school and have free access to clubs to enhance his social experiences whilst elsewhere that same child could be left to struggle in mainstream with no access to speech therapy, no support for his or her family and not even an annual paediatrician check up.

The reasons why this happens may be complex and take time to change but that does not mean we should accept it as normal.

I feel blessed that on the whole my children have the educational support they require, my son can access some respite, my daughter has received the necessary eating disorder diagnosis so that everyone understands her, and I am aware of some amazing support groups nearby.

It breaks my heart when I think that the difference between what I have experienced and what other families in the UK experience is all down to one thing: where you live.

Isn’t it high time we addressed this and stopped failing so many autistic children, young people and adults so that everyone has equal opportunities to be the best that they can be?

My Ten Year Old Son Doesn’t Know What Christmas Even Is

As his twin sister races downstairs eager to open another door on her advent calendar, excitedly counting down the days to Christmas Day, you watch TV flapping like any other day.

As your twin sister practices Christmas songs after school in preparations for her Christmas show in two weeks time you watch the same ten seconds of lifts on you tube and rock in your seat as you always do.

Christmas means nothing to you.

No letters to Santa, and definitely no visits to any grottos.

No decorating a tree with the family or even any concept of what tinsel is.

No singing Christmas carols or dancing to seasonal pop songs as they play in the shops.

It all means nothing to you.

Your world is oblivious to the hype, the busyness, the traditions that consume society at this time of year.

You would eat turkey and all the trimmings if it’s put in front of you, but you would equally eat any other meal presented too. It’s just food to you, nothing more, nothing less.

My autistic ten year old has no understanding or interest in Christmas. He is still consumed by his own world, dependent entirely on routine, not communicating verbally at all.

Honestly, some days that breaks my heart. I know we should not compare children as each child is unique and individual but at Christmas you want your child to be excited, happy, expectant. Instead my son is uninterested, unconcerned and unaware.

Christmas isn’t his ‘thing’. Neither is Easter, his birthday, the tooth fairy or any other number of occasions you can think of. None of it enters his world.

He won’t write any Christmas cards (he can’t write any letters let alone his name) and he likely won’t receive any either, family events and get togethers are too much for him so I stay home with him. The only Christmas event he will come to is the church service but even then he gets very upset because it’s different to how he perceives church to be. He doesn’t know Christmas carols and he wants the usual songs he is used to back.

He doesn’t like the changes.

He doesn’t like new stuff.

He doesn’t like Christmas.

I can’t change that. It’s who he is and how he is. I could cry my eyes out every day for years but it won’t change things. I’ve had a decade of crying and wishing things were different. I have accepted that Christmas just isn’t something my ten year old understands nor does he wish to partake in it.

Even if I bought him presents he would never open them. He’s never opened a birthday or Christmas present in his life.

I could pretend it’s all ok. I could move a tree near where he is and take a picture and pretend he’s part of it all. I could put seasonal clothes on him and imagine he chose them. I could buy and wrap stuff for him and dream that somehow the magic of Christmas would change him overnight. All that would do is break my heart more.

I don’t need that. He doesn’t need that.

So while I decorate my daughters bedroom with her and revel in her excitement, while I buy and wrap gifts for her eagerly looking forward to seeing her face on Christmas morning, while we sing and laugh together as we practice Christmas songs the other side to my life is that I am playing down everything as much as possible to keep my son at ease.

I walk a fine line of trying to celebrate and embrace Christmas with one twin whilst ignoring it’s very existence with the other.

My son has severe learning difficulties, severe autism and epilepsy. He can’t speak. He can’t care for himself.

He is full of life, full of fun and the love of my life.

But at ten years old he still doesn’t know what Christmas even is…and he most likely never will.