Do you ever wish you could ‘switch off’ your child’s autism?

Sometimes I do.

When I just need to get bread and milk from the local supermarket and I’m tired, in a hurry and just want ‘in and out,’ I wish I could ‘switch off’ my child’s difficulties with the music, crowds, smells, his absolute NEED to see the lift and his inability to stay beside me safely. Just ten minutes without autism would make that task easier…for us both.

When he’s crying in pain and unable to communicate why or where it hurts. How frustrating and distressing that is for us both. I wish I could ‘switch off’ his communication difficulties just long enough for me to be able to understand and help him.

When I am attempting to make a packed lunch for a school trip and I’m in tears because ‘lunch’ to him means a hot meal and I know everything I make will be refused. Just a half hour meal with autism ‘switched off’ would be a blessing for me, but more so for him. I know he doesn’t want to be so rigid but he just can’t prevent it.

When there’s roadworks and I need to drive a different route. To watch his face screw up in disgust and confusion followed by the onset of tears and challenging behaviour is torture for us both. I wish we could ‘switch off’ autism, just during the journey, not forever.

When I need to get medication into him. Just one minute of autism ‘turned off’ would allow vital epilepsy medication to be swallowed so much easier. While things are improving it is often very challenging and distressing for everyone. Antibiotics leave us both traumatised.

Right now though more than anything I wish I could ‘switch off’ severe autism as we face a period of very challenging medical difficulties. My non verbal son has recently been diagnosed with a growing brain tumour. He needs multiple anaesthetic’s and a brain tumour biopsy followed by possible treatment that will be invasive, challenging and intensive. I want him better; he needs to get better. The alternative isn’t something anyone wants to think about. . The presence of autism complicates even the simplest of procedures and we don’t have the time to ‘mess about’ right now.

Time is not on our side so having three months of acclimatising to new surroundings isn’t an option. Printing visuals of all the doctors we need to see, making timetables of when they will be seen and watching videos of procedures before hand to prepare my son just aren’t options any longer. I can’t just say ‘I couldn’t get him out the car’ to his neurosurgeon when they have theatre all prepared and scheduled for a brain biopsy. When appointments suddenly need changed due to things progressing fast I can’t say to specialists ‘well it’s not on his timetable so he won’t cope.’ ‘Sorry he stayed awake all night again as usual last night so we need to sleep today’ just isn’t an option when there’s an MRI machine booked for yet another scan, or nurses waiting to run more tests. There’s no option to say ‘don’t worry about his meltdown. I’ll just sent out another appointment in six months and we’ll try again then’.

We haven’t got time to put any communication device in place for my non verbal child any more, not that he has taken to any in the last ten years anyway.

Medically we are facing a crisis and severe autism doesn’t ‘do’ crisis. My son doesn’t do ‘sudden change’ or even just ‘change’. He doesn’t cope with new people, new places, being touched, sitting still while people talk, having needles put in, waiting around in clinics, or even having a simple plaster on!

I fully accept and love my son, autism included. I’ve never had an issue with flapping, watching the same thing lots, communicating in his own unique way or even needing routine. In fact I’ve developed strategies, patience, and understanding and I really wouldn’t want him any other way.

But I would be lying if I didn’t say that right now, in the middle of medical difficulties that can not be ignored or delayed, I would not love to ‘turn off’ autism just for short periods of time to make things easier for him, and also for me.

Autism can be a blessing and it isn’t something I hate but it can also make life challenging and right now we have enough challenges to face treating his brain tumour and we could do without the struggle just to get him inside a new hospital or the inability to wait for his name to be called and the terrifying fact his autism means he can’t communicate when or where something even hurts.

I thought in the past I’d like little moments of being able to switch autism off but right now I’ve never wanted that ability more. Autism is making an already challenging situation so much harder, not just for me but for my son. I’m not wanting my son to be non autistic just less rigid, less anxious, less ‘stuck’ during a time when co-operation, flexibility and communication are vital.

99% of the time I have time to do what he needs to help him. Unfortunately right now we are living in that 1% and I can not even adequately express how much simpler things would be right now without the added issue of severe non verbal autism.

Have I ever wanted to switch autism off? Right now for my son’s sake…yes! Most of the medical staff treating him would probably agree with me too.

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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’

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.

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.

Six Reasons Why Autistic Children Might Struggle With Losing

Last week I was at a school party with my daughter for Halloween. She’s not a fan of parties yet wants to be there too. It’s a huge internal struggle for her as she as she wants to be there like everyone else but realises she is different too.

The free dancing, general socialising, and snacks were hard enough but worse of all was when the games began.

My daughter loves games. She loves the rules and obeys them precisely. She likes that they are organised, structured and fair. The only problem is…she has to win!

They played one game which she lost right at the very start.

In front of her peers she could not hide her upset and I had to remove her from the room to save her embarrassment.

It’s now over a week later and she still can’t get the fact she lost out of her head. She can’t process it or make sense of it.

Of course all children can find it hard to lose but for autistic children it can be so much worse.

It’s not about just telling them to be a ‘good loser’, or using logic to explain that only one child can win out of everyone there. There are very valid reasons why autistic children can find losing hard and before we can help them we need to understand them better.

1. The Spiky Profile

Autism is a complex disorder and it usually comes with what is known as a spiky profile. This means that a child’s development is at different levels in different areas that what might be expected for their age. So, for example, while my daughter is on par with her peers in maths ability she is years behind in social skills. While her peers have mastered ‘good sportsmanship’ she isn’t there yet. It doesn’t make her any less it just means she needs extra patience and understanding. All children develop at different rates but somehow society expects all children to accept losing gracefully by the time they start school. For many autistic children this just isn’t realistic.

2. The Overgeneralisation

When my daughter loses in her mind it isn’t just a game, it’s everything. Her mental health deteriorates so quickly and it escalates from ‘I didn’t win that game’ to ‘I am useless at everything’ in minutes. Nothing will persuade her out of the mindset that she didn’t win so therefore she is terrible at everything, everyone hates her, and there is nothing she is good at at all. Many autistic children can be like this. They process the game as something of major significance and losing becomes the be all and end all. All rational thought leaves and they judge themselves by the sole fact they lost at one thing. While some may think this is ‘stupid’ or ‘childish’ it is a very real anxiety and needs patience and understanding.

3. The Humiliation

One thing my daughter can not abide is being the centre of attention in a negative way. She hates people staring at her or seeing her as different. Her social anxiety makes her believe that everyone thinks of her as a loser so the humiliation of publicly losing a game just reinforces that fact in her own mind. The shame of not being the best, the embarrassment of having to ‘sit out’ and the added cheers from others who continue to play only make this worse. Despite the fact she knows it is fair she will argue that ‘it’s not fair’ because in her mind fairness equates to only her winning. Which leads to the next point…

4. The Expectation

Losing well takes practice but how can you practice something that causes so much anxiety you can’t cope? It doesn’t matter how much you try to explain to my daughter that the reality is only one child will win and statistically that is very unlikely to be her, she will then argue that is ‘should be’ and ‘could be’ her so she plays with the attitude of ‘I am going to win because I want to’. While this is admirable and makes her play well and push through her social anxiety about joining in, it all falls apart very suddenly when she doesn’t win. It’s a catch 22 situation because if she accepted she was unlikely to win she would never agree to join in in the first place! I. Her mind she has already played out the game already. That’s the only way her anxiety will allow her to play but her imagination has her winning so when the reality is different the crash is big. Expectation vessel reality is always a hard one for everyone.

5. The Inability To See Things From Others Viewpoint

My daughter isn’t selfish. She is actually one of the most empathetic children there is but when it comes to games her anxiety becomes so high she goes into self preservation mode. In that mode she can’t look at someone else’s point of view so forcing her to congratulate the winner won’t work. She feels cheated and angry at the winner so how can she say ‘well done’ to them? Her own feelings and upset become so huge they are overpowering preventing her from having empathy for anyone else at that precise moment.

6. The Lack Of Control

One of the hardest things about any sort of game, wether it’s snakes and ladders or musical bumps, for an autistic child can be the absolute lack of control they have over any of it. The randomness of what you may thrown on a dice, or having an itchy nose when you should be frozen in musical statues is uncontrollable and that can bring huge anxiety to many children. They can’t predict and they are out of their comfort zone which can cause upset, frustration and challenging behaviour.

You would think with all that my daughter would hate games. In fact the irony is she loves them! Yet no matter how many different games we play she still finds it deeply distressing to lose.

The important thing is I recognise that and I understand and we continue to work on good sportsmanship often.

Like everything it’s about patience, understanding and compassion.

So the next time you see a child crying because they lost at pass the parcel or getting angry because they were ‘out’ at musical chairs spare a thought for the difficulties they are dealing with and remember we can all struggle to lose…especially when it comes to football!

To The Parents Of The Disabled Child Who Doesn’t Look Disabled

Dear fellow parent,

I understand.

I understand what it’s like to be in the park and others wonder why you are sticking so close to your child, perhaps guiding them or supporting them to do what other children much younger are doing easily. I know what it’s like to see parents and children stare at your child, laugh at them or worse…walk away from them.

People would understand if your child looked different, if you were pushing them in a wheelchair or if they had a walking frame. I see your child’s disability even when they don’t look disabled.

I understand.

I have a child just like that too.

It’s the expectations isn’t it. They look fine so why are they not talking like others expect, acting age appropriate or joining in with others? The assumption that ‘looking fine’ means they are ‘fine’ and that we are the issue not the child. Oh do I understand that!

Our parenting is questioned just because our child doesn’t ‘look disabled ’ whatever ‘looking disabled’ is even meant to mean? People think we are over protective, over bearing and causing the problem. Yet they don’t know what we know. They don’t see what we see.

They can’t see autism so they don’t know it’s there.

They can’t see global delay or learning difficulties so they must not exist.

They were not there when you received the genetic diagnosis so they don’t know.

They haven’t experienced the epileptic seizures so therefore you must have made them up.

They don’t know anything about the myriad of specialists you have visited or the volume of appointments your diary is full of.

They see your child and make assumptions based on the fact they look ‘normal.’

I understand.

You dare not mention that your child receives disability money. You know from experience that you will be accused of using your child to get money.

Why? Just because your child doesn’t ‘look disabled’ so therefore according to society they can’t be disabled.

I understand.

You see I have a child like that too. I get the sideways looks when I hold my almost ten year old tight as we walk. I hear the sniggers as he flaps and makes baby noises as we walk down the supermarket aisle. I know the judgement at the school gate when my child is the different one yet he looks just like any other child.

For some reason disability is meant to be noticeable or else it must not exist. People have this strange notion that if something can’t be seen then it must not be believed.

I know how that makes you feel because I feel it too.

We should not need to justify our child disability just because they don’t look disabled as people expect. It shouldn’t matter what someone looks like and people are so quick to judge.

So know you are not alone.

Know that I understand.

I am right there with you.

You do what you need to do for your child and know I support you.

Together we can raise our beautiful disabled children who don’t look disabled and hopefully one day others will understand too.

Yours lovingly,

A mum of a stunning but very disabled little boy.

This blog originally appeared here

The Top Ten Offensive Comments People Have Made About My Autistic Family

I have two beautiful and wonderful autistic children. I also married a unique and handsome autistic man (though we were married 19 years before he was diagnosed). They all enrich my life but being different does seem to attract attention at times…and not always positive attention!

As a parent and wife I have had to develop broad shoulders and thick skin to many things people say about my family. I thought I would share the top ten most offensive ones and explain why they hurt so much and what you could say instead.

Firstly I want to stress that this is not to condemn anyone or make them feel awful. It’s about education and understanding so if you have said any of the following don’t feel guilty just endeavour to think and understand more from now on. Thank you.

1. ‘Will they recover one day?’

Why is this offensive? Autism isn’t an illness or a disease that gets better. It is a lifelong difference that should be embraced and understood. By asking if my children will recover you are implying they have something awful that needs treatment or therapy to get rid of it. You can’t ‘get rid of’ autism and you insult my family by implying or suggesting they should get over, recover or get better from their unique differences.

It would be better to say ‘Maybe they will change the world one day!’

2. ‘It’s that modern day ‘in thing’ to cover up poor parenting.’

Why is this offensive? You are saying autism is fictitious and that the unique make up of my children and husband which makes them who they are is a negative thing brought about by something I (or in my husband’s case his parents) did. Autism isn’t ‘new’ despite the fact we now understand it better and therefore diagnose more often. Autism happens in poor families, rich families, highly skilled parents, working class, the unemployed and the elite. You will find autistic children and adults in families with a huge variety or parenting methods so there is absolutely no evidence to suggest it has anything to do with poor parenting and suggesting otherwise implies ignorance.

It would be better to say ‘It’s more common in modern days but hopefully that helps parents feel much less alone than before.’

3. ‘I’m praying for a cure.’

Why is this offensive? You are praying to change the very being of who my children and husband are! You can’t cure or remove the autism from them any more than you can take out their hearts! God made them exactly who they are and he accepts them and loves them. Why would God want to cure someone he made wonderfully unique?

It would be better to say ‘I’m praying for you as life must be a bit more difficult at times for you.’

4. ‘It’s a slap he needs not a diagnosis.’

Why is this offensive? It questions my parenting and implies my child is unruly and undisciplined when he is autistic, not a brat. We say autistic people are very rigid but in fact society is very rigid in how they expect people to behave. Acting differently to expected does not mean my child needs corrected it means we need to be more tolerant and understanding.

Instead you could say ‘It’s understanding he needs and that can start with me.’

5. ‘I hope none of my kids ever copy yours!’

Why is this offensive? It implies my child’s behaviour or actions is something unacceptable to others. It’s usually said to me when my child is flapping, spinning, making repetitive noises, or not answering when spoken to by a stranger. The fact my child is non verbal seems an alien concept to some. There are so many amazing things both my children (and husband) do that I think if other children (and adults) copied their resilience, energy, enthusiasm, excitement and empathy the world would actually be a better place.

Please rephrase your comment to ‘There is so much my children could learn from yours!’

6. ‘Oh everyone has a bit of that really so what’s the big deal?’

Why is this offensive? By implying everyone is on the autism spectrum you imply my children’s and husband’s struggles are not valid and their diagnosis is worthless. In order to be diagnosed with autism you have to meet a high level of criteria and be assessed by professionals in a number of fields of expertise. If we were all a little bit autistic why would we bother diagnosing anyone?

It would be much better to say ‘Oh you have a diagnosed condition. That’s quite a big deal!’

7. ‘They never had that in my day’

Why is this offensive? It implies autism is made up. You only need to meet my family to know this isn’t true. Oh and for the record my husband was born autistic and he’s 60 so it’s ‘been around’ much longer than people think!

Instead it could be said ‘I know autism was around in my days too but unfortunately it wasn’t as well recognised back then.’

8. ‘I’m so sorry. That’s awful.’

Why is this offensive? You are saying that my children and spouse are so defected and bad that them being autistic is something to be ashamed and depressed about. There is nothing awful about autism. Don’t say you are sorry please. It is NOT a tragedy.

If you want to express love when someone is diagnosed please say something like ‘I’m so thankful for you. Being autistic doesn’t change you and I am still your friend.’

9. ‘Are you sure he should be in mainstream with normal kids?’

Why is this offensive? You just implied my child isn’t normal! You also implied my child has no right to be educated among his peers. That is dangerous, insulting and very very hurtful.

Instead be supportive and inclusive and tell me ‘I am so glad your son is in mainstream with my child. It’s how it should be and we all gain from it.’

10. ‘He seems fine to me!’

Why is this offensive? Because my son, my daughter and my husband are all fine already! They do have struggles (wether others see them or not), they do react differently to others sometimes and they may communicate in unique ways but they are perfectly ok too. Just because we don’t see someone’s struggles does not mean they don’t exist.

It’s much more respectful to say ‘You look well. I am proud of how well you are doing.’

The vast majority of people don’t mean to offend and I understand that. However a more careful choice of words and respect go such a long way.

Here’s a cute picture of the three most amazing autistic people I know. Why would anyone want to say any of the above about them?