Can We Take Autism Acceptance Too Far?

My husband is autistic. Both my children are autistic. I am a huge advocate of autism awareness and acceptance. However I am also a realist and deeply honest and something that has been worrying me more and more is the fact that we seem to be moving perhaps too far in our pursuit of autism acceptance and I am now wondering if the scales are now tipping too far the other way?

What do I mean?

Well for many years the voices of autistic adults were ignored and suppressed. In more recent years, thankfully, this has been changing and some of the most successful advocates for autism are now autistic adult self advocates. This IS a good thing and I don’t want us to stop hearing from autistic adults. I have learnt so much from them and I would love my own daughter to emulate some of them as she matures and grows.

However, there is a balance and with the growth of self advocates there has been a real suppressing and abuse of parents of autistic children (and adults) who have been threatened and bullied because their thoughts seem to clash with the autistic self advocates.

You see autism is a very different experience for different people. For some adults it is just seen as a different way of thinking or a unique way of looking at the world and for them that is absolutely fine and right. Then there are parents, like myself, of children who may never talk themselves and who have extremely high care needs and require round the clock care, diagnosed with the same condition, yet living very different lives. For those families, and I say families because it affects everyone not just the autistic child or adult in these cases, autism is a huge disability and they have a right to voice that too.

Here is a good example of how things have changed:

Six years ago when my son was just four, screaming all day, smearing, non verbal, still in nappies and attacking me I would read posts on support groups which read ‘Help My child is always in meltdown, attacking me and stimming. I’m exhausted and struggling.’ I could identify and I would say so. So many others said similar and the person posting was validated in their struggles while a few would give some ideas of things that had worked for them. Everyone wanted to help both the child and the parent but at no point was the parent made to feel awful for struggling.

Fast forward six years later and the same post in the same group gets very different comments because things have changed. We have been told by autistic adults how much they need to stim and how we need to accept them for exactly who they are and embrace their differences. While that is absolutely right it has also lead to parent bashing and now the same parent gets comments such as ‘how dare you make this about YOU!’ They are called a martyr mum for struggling and some even go as far as to threaten to report them for abuse claiming the child is struggling because they are such an abusive parent. What then happens is the parent feels worse than ever, even less equipped to support their child and even more isolated than before.

Then there is the cases of genuinely concerned parents desperate to help their struggling children asking about therapies in order to help their child make friends, communicate better or cope better in school and they are jumped on by autistic adults who were damaged by certain therapies as a child and who say the parent isn’t accepting or loving their child as they are because they want to change them.

We are fast reaching a point where parents are no longer allowed to be human, or ask for support or want to help their autistic child. We are no longer allowed to mention anything that even hints that our child struggles or that they have any difficulties or we are accused of ableism.

Apparently I am not politically correct and ableist by saying my son has severe autism, he is non verbal at ten, not toilet trained and has the academic ability of a baby. However that IS exactly what he has. He has low functioning autism and his reports even state ‘severe mental impairment’. Stating that he won’t get married, have children, live independently and need 24 hour support all his life is suddenly taboo and offensive because his autism is just a different way of looking at the world and nothing more. According to some self advocates I should have my son removed from my care because I dare to say his autism is a disability. Apparently none of his difficulties are actually his autism and all other conditions. They say my attitude is what disables him and not his autism.

We need the voices of autistic adults, as parents we need to know what to avoid and how best to support our children BUT we need to also be allowed to struggle too. The seesaw of acceptance has to swing both ways.

For a long time parent voices out weighted those of autistic self advocates and that was wrong. Now I feel we are in danger of swinging the opposite way and parents who are sleep deprived, heartbroken at watching their child self harming or struggling with suicidal thoughts, or just exhausted by the same ten seconds of a video on replay for 8 hours, are vilified for daring to say autism can be difficult.

Can we take autism acceptance too far?

If we continue to see it just as a different way of thinking or seeing the world we are in danger of losing educational support for so many struggling children and throwing them into mainstream because ‘autism is not a disability’.

We are in danger of losing vital financial help for families because they are too afraid or programmed not to admit their child’s struggles.

We isolate struggling parents leading to an even bigger chance of vulnerable children being abused and parental suicide.

We cut back vital adult services for those who need it because we see anyone with autism as just different and not therefore in need of support.

We need a balance and an acknowledgement that autism is experienced differently by different people and that’s ok. Some need very little support while others need much more and that includes parents as well as autistic children and adults.

Until we accept that the balance of autism acceptance will never be right.

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The Shock Of Finding Out My Autistic Son Has A Brain Tumour

Two months ago I took my non verbal ten year old for a routine MRI under general anaesthetic. It was his fourth one in two years and we all knew the routine. Isaac is autistic with learning difficulties but his love of toy food and his enjoyment of his iPad meant we had found ways to support him through what was always and long and difficult day.

Very few autistic children ever need an MRI. Unfortunately Isaac also has a genetic condition called Neurofibromatosis Type 1 (NF1 for short) which means his body grows tumours on his nerves, and so two years ago an MRI was requested due to his inability to communicate pain or changes that were viral in monitoring his condition. Isaac’s neurologist wasn’t expecting to find anything suspicious so it came as a shock when three weeks after his first MRI I received a call from her to come up and see her the following day with the added request to ‘bring someone with you if possible.’ That gave me some idea that it wasn’t great news.

Two years ago we found out that Isaac has a developmental eye condition in his right eye which meant he very likely had little to no vision in that eye. They also discovered that his left eye had a tumour on the optic nerve which had been discussed with an oncology team and would be monitored. No-one wants their child discussed by an oncologist but I left feeling positive that at least there was no imminent treatment required.

Isaac’s next MRI six months later found more abnormalities but I was assured these were ‘consistent with NF1 and will continue to be monitored.’ Meanwhile Isaac continued to grow and develop and seemed well.

His next MRI was late due to his neurologist being on long term sick leave. By this point Isaac had rather suddenly started having seizures, first for a minute or so then very quickly turning into 4 and almost 5 minutes long with full shaking, vomiting, thrashing and foaming at the mouth. They were terrifying for everyone. It didn’t bode well for the results of his scan which showed an ‘emerging tumour’ in his right frontal lobe which was almost certainly causing his seizures. It took months but finally we found a medication which seemed to help, though it made Isaac very weak and caused other side effects that I was reassured would settle.

That was a year ago this month. Isaac’s neurologist went on to retire and there was a long wait to be seen by a new neurologist. He referred for another scan as this hadn’t happened and thus it was 9 months before Isaac finally had his next scan. This takes us to two months ago. By this point I was slightly concerned as Isaac had never really picked up since last summer and in fact he was more tired, his walking was worse, he was vomiting randomly and seemed very lethargic.

So here I was in the same day ward for the fourth time as my son yet again had general anaesthetic for a procedure that enabled us to gain more knowledge of what was going on in his body. What happened next turned our whole world upside down.

Three weeks after the MRI I had a call one Thursday evening while my children were eating dinner. It was Isaac’s neurologist apologising for the delay in me getting his results and saying that this was due to medical meetings to discuss his scans and that unfortunately they had found something concerning. My son had a growing brain tumour. A medical team including an oncologist and a neurosurgeon had been discussing my child without me ever knowing.

That night I was told my son needed an operation for a brain tumour biopsy and that the neurosurgeon or oncologist would call with a date to speak to me further and tell me more. Due to Easter weekend and difficulties scheduling a time when both the oncologist and surgeon were available it was two weeks later before I found myself in a cancer ward of my local children’s hospital being shown this scan of my son’s brain tumour and being told that he required a repeat scan urgently followed by an operation to remove some of the tumour for biopsy before possibly needing chemotherapy or radiotherapy. All the time my son was at school as if it was all just my imagination.

We then waited for a call and life seemed to be in limbo. The hospital struggled to find a date so at one point they wanted Isaac admitted indefinitely so that he could take advantage of any cancellation right away. Being autistic, and having an autistic sister and dad this would have made life impossible so it was a huge answer to prayer when I had a return phone call to say someone had cancelled and a day could now be set for Isaac’s repeat MRI.

He had that just 9 days ago. It showed his tumour had grown again so at 3pm that day I had a call to say Isaac was to be admitted to hospital the next day. While I amused and settled my complex needs child the surgeon explained that due to the position of the tumour and the possibility of needing a repeat operation he would need to carry out a much larger operation called a craniotomy and Isaac would be in surgery for some hours. He could not say wether he would recover, wether he would walk or play again or if he would even survive surgery. Signing permission was terrifying.

Isaac had a six hour operational to cut his skull open and remove some of his tumour for biopsy just a week ago. When he finally returned to the ward he would not regain consciousness and it was touch and go throughout that night if he would make it. It was Saturday morning before he woke, a much different child to the one who had went to theatre the morning before.

Isaac got discharged two days after his operation. Having him in hospital and juggling care for two complex autistic children was very very difficult and my whole family went through extreme trauma. It took until two days ago before Isaac could walk and stand unaided. His appearance changed drastically due to extensive bruising. He needed fed for several days as he could not even feed himself.

A week after surgery and he is recovering well. He can stand, walk, use his iPad and say two of the three words he had previously. He can self feed, see from one eye and is aware of much more than everyone expected.

In five days time we are due to get the results of his biopsies. He could face a repeat operation to remove the tumour or chemotherapy or radiotherapy. Or there may be nothing more they can do.

Life has changed significantly. It’s been a huge shock for everyone to find out Isaac had a brain tumour and then watching as he went through extensive and serious brain surgery.

The one blessing of it all though is that Isaac lives in the moment. He wakes everyday and takes on whatever comes his way with a determination, a tenacity and a resilience that assures me that regardless of his extensive communication and learning difficulties his love of life (and love of lifts) will see him through whatever the future has.

Until Wednesday I don’t know any more.

Tonight I am eternally grateful to kiss my son goodnight and hold him in my arms.

How My Ten Year Old Showed Me About Autism

A week before my daughter had her fifth birthday I took her for an appointment at a local clinic. She can’t remember anything about that day at all but we left with life long diagnosis and a relief of knowing why my daughter was different. That was the day she was diagnosed autistic.

I don’t believe in hiding things from children. Children are way more resilient than we often give them credit for and they deserve to know about their own diagnosis if it is appropriate for them. I didn’t want my daughter growing up thinking she was ‘weird’ or ‘different’ as her dad grew up with those same feelings and it has really affected his mental health as an adult. Unfortunately he wasn’t diagnosed autistic until he was 59 and the not knowing and therefore not having access to support has affected him negatively for many years.

I wanted my daughter to grow up proud of who she is, autism and all.

I have never once sat down with either of my children and told them they are autistic. I have never talked about the ‘triad of impairments’, or sensory difficulties or how being autistic makes her vulnerable and different to others. Her understanding of autism has organically developed over time by living with a twin brother who is non verbal with learning difficulties and who is also autistic, experiencing her own autism daily and seeing how her dad experiences life differently to me as an autistic adult. Anytime she has had questions or concerns I have explained things openly and as simply as possible.

She has also watched me advocate for her, her brother and her dad. Meanwhile, in her mainstream class she has seen another five children receive the same diagnosis as her despite being very different. She has been exposed naturally to a wide spectrum of autistic people and non autistic people and this has allowed her to form her own opinions of what autism is.

So when I told her I was planning to make some autism pictures for autism awareness month she freely asked if she could do them instead. I listened to her ideas and instantly loved them and so thought April 2019 she set about to embark on a project that has opened my eyes to just how much she understands about autism and given me great insight into how she sees the world.

If you asked Naomi ‘what is autism?’ she would be unable to answer you. If you asked her ‘what is autism like for you?’ she would also struggle. But allow her to show you and her insight and awareness is truly remarkable. Without even knowing it she touched on all the main ‘features’ of autism from communication:

To literal thinking:

To the need for routine:

To sensory issues:

To sleep struggles:

From liking rules:

To needing to be alone:

From struggling with things (or being brilliant at them):

To feeling overwhelmed:

From struggling with choice:

To liking repetition:

From needing comforts:

To finding words hurtful:

From the need to finish things before moving on:

To finding bathrooms scary:

She even covered the seasonal issue of Easter since it landed right in the middle of awareness month:

Her pics were simple, effective and, other than her hashtag, had no other mention of autism. All she wanted to show was summed up nicely in her first ever pic:

So when I told her that hundreds of people were following her pictures and asking if they could keep them she chose to end with a little humour….

She found it quite amusing that the majority of people who wanted to ‘collect’ her pictures were in fact more like her than they perhaps realised.

At just ten she’s proud to be exactly who she is but she wants others to know and understand that while someone may be autistic you may be far more able to relate to them than you might think.

We might all be different but in so many ways we are just the same.

I could not be more proud of her.

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.

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.