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’

When You Lose Purpose As A Parent Of A Disabled Child

I’ll be called a martyr mum for writing this. I’ll be accused of being self indulgent and making my child’s disability all about me. That’s all fine by me because I know I am breaching a big social taboo, putting myself on the firing line and making myself vulnerable. So why am I writing this? Well because I am far from alone in experiencing this and others need to know they are not alone.

Let me start by back tracking a little. When I was in high school and I was choosing subjects I was encouraged to think about my future. What did I see myself doing after school? What grades did I need to achieve this and how would I go about progressing my life. In other words what was the purpose of all my learning. I was instructed to ‘make the most of myself’, ‘aim high’, and ‘study hard.’ I ended up choosing an academic path and graduated from university with an undergraduate degree in teaching. I had a career path set out ahead of me.

So ok life didn’t quite go as planned and the sudden death of my dad threw me a curve ball, and though I did graduate I then went on to find employment in lots of different roles as I tried to figure out who I was and what I wanted from life. I worked, I paid my bills, I paid tax and I achieved. Regardless what employment I had, I had purpose.

I then got married and ten years later gave birth to twins. They became my purpose as I raised them to the best of my ability. I expected my children to be my new purpose for their whole lives, perhaps interspersed with some voluntary work or helping in things child related such as play groups and later schools.

It then transpired my children needed lots of support. Both are classed now in different ways as disabled. My son will require life long care.

Suddenly my purpose became fighting for everything he needed. Yes he was the disabled one but with a complete inability to ever advocate for his own needs I had no choice but to take on that role…for the rest of my life.

He’s now ten. I’ve fought for the early intervention, I’ve fought for the right primary school. I’ve fought for services, professional involvement and support. I’ve begged, cried and emailed more times in the last ten years to strangers than I ever thought possible.

And here I am with a severely intellectually disabled son who will require round the clock care all his life and I am starting to lose my purpose fast. As preparations start for high school, a time in life when he should be becoming increasingly independent, developing his learning to prepare for his further and gaining life skills for the workforce, I am left thinking how does any of this stuff relate to my son who is currently unable to care for the most basic of his own needs and still can’t write his own name?

He won’t go to college.

He won’t work.

He won’t handle his own money, live independently or ever drive.

I am expected to be his full time carer until the day I die. I am supposed to carry on doing intimate care on a teenager and grown man, entertain and educate a child who will never know what a wage packet ever is, give him the best and most fulfilling life possible and deal with all the financial implications of life with a disabled teenager and adult.

They never mentioned any of this at the careers conventions I attended in high school.

No-one told me people like my son existed let alone that parents of such children are expected to devote their entire lifetime caring for them full time.

I don’t resent my son. Not for one moment. I adore him, love him unconditionally and delight in every part of him. But where is my purpose in life? Am I really just the person sitting singing nursery rhymes to my adult child and watching Peppa Pig for eternity on YouTube?

I will fight for him.

I will love him forever.

I will do everything in my power to make his life meaningful and enjoyable.

I will give up my dreams, my future and my purpose for him because he is worth it.

I will sacrifice my future for his.

That’s the only purpose I have left now. It’s what being the parent to a disabled child with such high needs as mine requires.

So go on call me a martyr mum. Tell me my son’s disability isn’t about me. My son is severely disabled and relies on me just to get washed and dressed, communicate and live.

My sole existence is caring for him. That’s the only purpose I have and ever will have until the day either he or I passes on. If the pressure and weight of that burden is self indulgent then so be it.

Sometimes forever just feels a very long time.

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.

My Husband’s Story: I didn’t even feel I was normal

My name is Nigel and I was diagnosed with autism at 59.

I always felt I was different right from my teenage years. It’s hard to describe but I didn’t even feel I was normal.

I hated school. It was a real struggle and so hard. I didn’t go to anything at school, clubs and such. I had no true friends. I was just different and invisible. I felt like I was always passed over. The only subjects I was remotely good at where physics and chemistry. Maths was a mystery but then I had a PE (physical education) teacher teaching me who had no idea about maths herself. I never did understand that one.

I was horrendously bullied at school. Every single day. Kids beat me up, kicked me and pushed me. All I remember about school was being black and blue from the other kids.

I think my difficulties and struggles were overlooked as I had a physically disabled sister who was number one priority in the house at all times.

I collected stamps for years and liked photography but it was frustrating as with just 50p a week what can you really collect?

After school I worked in a supermarket for years. It was just a job; somewhere to go really. I had work colleagues but no friends there either. I only left that job when I moved from Wales to Scotland to do a course. I had no idea that would be the last job I would get for many years. I can’t do forms, I detest them with a passion. I have a speech impediment which means I’m rubbish at interviews. I can do the job but few ever saw that bit.

I hate change of routine. If I do the grocery shop any day but Thursday I get so confused. I struggle to shop anywhere but Tesco as other shops are laid out differently, smell different, look different and don’t sell Tesco products. I would be wondering ‘will I like that?’ , ‘Will it be as good as the Tesco brand I know?’, ‘where is the the sell by date?’ I know where that is on the Tesco product.

If something doesn’t work in my routine I am so thrown out not just for that day but days later.

If I am geared in my mind to park in one place and there is no spaces there I can’t think of anywhere else to park so I go home. That may sound strange but it’s just how I am.

It wasn’t until my son was diagnosed with autism when he was three and I reluctantly went with my wife to a course that I started to think the course was talking about me and not my son. It was like an awakening to think maybe I actually had something that was making me different after all.

People always had the attitude ‘oh that’s just Nigel’ and would ignore me, ‘he doesn’t know anything’; people never give me any credit.

I have been depressed since my teens but no-one really thought about it. They would say ‘what do you have to be depressed about?’ I’m been on medication for 5 years now. I’m still depressed it’s just some days I have good days and others bad days.

I have two autistic children but that doesn’t mean I can help or understand them any more than my wife who is not autistic. In fact caring for them exhausts me due to my own depression and autism and the fact I have a hearing impairment.

I hate being interrupted and the children interrupt with demands, screaming and needing attention so much. It gets too much. If I cook dinner and you interrupt me by phoning I can’t concentrate to cook dinner. I just can’t.

I’m allowed to struggle. After all if I didn’t struggle with certain things in certain areas I would never have been diagnosed would I? Isn’t that the whole point of autism?

But I have a strong faith, I love my wife, I adore my kids, and I get by.

Maybe if I had been diagnosed sooner things could have been different?

I don’t know.

I just hope my children don’t struggle like I have.

I hope the world is kinder to them.

Nigel.