I Could Hate Autism…but

I could hate autism tonight.

I could hate the fact my son has caused so much damage to my house again, both in financial terms and in emotional terms. Things of sentimental value smashed, toys broken, floors flooded, window blinds torn. I could hate the fact he has screamed for hours on end in frustration and anger and attacked anyone who came near him. I could hate the fact his sibling is having to deal with all this and live in a volatile situation she has no control over.

When the child who has caused the damage has a diagnosis of autism I could hate autism so easily, but I don’t.

Many would argue, and I would have done so in the past too, that my son’s autism is to blame for tonight. It was his rigidity of thinking and inflexible thought processing that were the triggers. It was the fact he could not control everything and his sheer need for set routine that started it all. It was the fact his communication needs are so high and he was frustrated at not being able to verbally say what he wanted. It was his lack of social awareness and inability to understand others viewpoints that meant he caused thoughtless damage to other’s property. Everyone of these things are key traits of autism spectrum disorder after all, so surely autism was to blame for it all?

Autism isn’t why my son is violent. Autism is not always the reason my child has meltdowns and screams.

There is more to my child than autism.

There is more to anyone than autism.

Let me be clear: autism does not make people violent. I do not hate autism.

Am I upset about my evening and the damage that was caused? Yes very much so. I am more upset, however, at the fact people will see tonight as something fundamentally down to severe autism. Severe autism does not mean a child will be violent. I can not stress that enough.

Let me say this: my son is 9. Yes he has autism. Yes he has no verbal communication. Yes he has learning difficulties and other complex needs. His challenging behaviour IS linked to his complex needs and these do play a factor in what happened tonight but they are not the full story.

I could hate autism but I don’t.

Instead I hate the fact I misjudged my son’s level of anxiety to the point I let him get to the stage of full meltdown.

I hate the fact my tiredness and frustration meant I never showed my child the patience and understanding he needed.

I hate the anxiety and frustration my son felt because his world felt so out of control and unordered because I never ran his bath at 6pm when he felt I should.

Autism was’t to blame for tonight: I was.

My son is a vulnerable child. Whilst he does need support to learn to wait and be more gentle (as does any child,autism or not, and many adults too!) he also has a right to be understood, be listened to and have his needs met regardless wether he can speak or not. I am the adult in all this and it is ME who needs to change and mature not him.

Do you know something…my son could have had a bad night, been frustrated and had a challenging evening even if he didn’t have autism. He is a 9 year old boy with developing hormones, a growing body and determination like any other child. We all get angry and children need space to be forgiven and grow as much as we all do. Have I ever wanted to throw something in temper at times? You bet I have. I have just learnt as an adult that there are better ways to deal with anger. My son just needs time to learn that too. Autism and learning difficulties may mean that takes a little longer and it’s my job to be more patient during that process.

In all the chaos of tonight, in all the broken toys, wet floors, and smashed items I found my son had done this on his bed. A line of cars to remind me how beautiful, ordered and perfect autism is.

I could hate autism but there is nothing about autism to hate.

Just to add I ran that bath, apologised to my child and we made amends. Yes he has autism and learning difficulties but his laughter, his energy, and his forgiving spirit know no bounds. One of the most amazing things about his autism is he will wake up tomorrow with no agenda, no grudge and a love of life that makes everyday wonderful.

I could hate autism but I love my son far too much for that.

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A Mother’s Cry: Can my Disabled Child Ever Become a Christian?

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It’s Easter Sunday, the very centre of my beliefs as a Christian, that my Lord and Saviour not only died for me on a cross to carry my sin, but he rose again on the third day to beat death once and for all to enable me (and everyone else who believes) to have eternal life.

I sat in church today and heard the gospel message preached with my beautiful children beside me, just the same as my parents did the generation before. I never tire of hearing the message of Jesus crucified and at 15 it impacted me personally on such a level my life has been rooted and grounded in my faith ever since.

Yet here I am faced with a massive question that has caused me to question my faith in a way I never ever expected: if he wanted to, could my disabled son ever become a Christian?

Why would I ask this? Well every tract I have ever read (there have been hundreds), every gospel message I have heard preached (there have been many) and every evangelist I have listened to have all taught a way to salvation that is fundamentally impossible for my child to ever achieve.

img_1145-1This is Isaac. He is, like everyone of us, made in the image of God. He is the most beautiful and incredible gift ever given to me. He is a true miracle having been prayed for and believed for against all odds. I was given medically less than 1% chance of ever having children yet after ten years of infertility God blessed me with not one, but two, babies. Isaac was the first born of twins. He has soft dark brown hair, hazel eyes that shine light and sparkle with life even if one of them doesn’t work and the other hides a tumour on its optic nerve. He makes noises, though at 9 and a half none of these noises form words that you and I can distinguish. He has severe autism. He has severe learning difficulties. He is epileptic. He has a brain tumour that means he will forever function as a very young child, most likely no more than aged 2 to 3 years.

So when I hear today’s gospel message once again I am crying, not only because the story of my Saviour always touches the very core of my being but because I know how the service will end and I can’t help wondering…

Can my disabled child ever be saved?

You see the way of salvation in the Bible is clear. It is based on such well known and readily quoted verses of so many believers: Romans chapter 10 and verse 9; “That if you confess with your mouth that ‘Jesus is Lord’, and believe in your heart that God raised him from the dead, you will be saved.”

I believe that.

But what if someone has such significant learning difficulties they will never understand and they can not speak their own name let alone say ‘Jesus is Lord’. What happens then?

Then there’s the famous one in John chapter 3 and verse 16: “For God so loved the world that he gave his one and only son, that whoever believes in him shall not perish but have eternal life.”

I believe that too.

But what about those who are cognitively unable to believe?

I could go on and talk about sin, baptism, the work of the cross, bridging the gap between God and man and all sorts of things that preachers and tracts talk about. Not one of these things will ever be understood by my son.

If he can’t understand the story can he ever believe in God?

He is never going to raise his hand at an alter call. He will never go forward for prayer to turn his life around, he will never hold a microphone and testify to how he was once an addict and now he is a Christian.

The fact of life is, for my son, and so many others, we need to see salvation in a different way.

Maybe I am tearing up the theology books here, maybe I am shaking traditions, but I believe my baby boy will always be saved. He will never be the lost sheep that the Shepherd longed to find. He will never be the prodigal son. He will never sin. The acts of the sinful nature (according to Galatians chapter 5 verses 19-20) are sexual immorality, impurity and debauchery, idolatry and witchcraft, hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions, envy, drunkenness, orgies and the like…one thing I can category say is that my son will never do these.

He embodies innocence. As Psalm 139 says he is fearfully and wonderfully made. Like us all he was made in the image of God. But unlike us, he can not choose to sin, neither can he choose to believe.

He can flap as we sing praises, he can make a joyful noise, he can rest in the presence of God. He can feel peace, experience joy and love deeply. I believe he can know God in his Spirit even if his mind and body don’t function as well as we would all like.

I believe he is in the palm of Gods hand.

I believe in grace that a loving God has searched my son and knows his heart, that he is familiar with all his ways. He alone created his inmost being.

God has this covered.

Can my son ever get saved when he can’t believe and confess like every preacher and tract says he has to?

I can’t quote you scripture but my mother’s heart cries out to a God who hears my prayers and is carrying my son both now and forever.

That’s my mother’s cry.

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The Five Signs That Tell Me My Autistic Child Needs Help

My children are autistic. I don’t want to cure them and I love them for exactly who they are.

However life for those with autism comes with extra challenges and for both of my children their difficulties in communicating often mean that the first I realise something is wrong is when we hit a crisis. As hard and heartbreaking as it is for me as a mum to watch my children struggle at times with these five difficulties I know it is so much harder for them. They are trying to communicate to me, and to others around them, that they need help and the onus is on myself, as their mum, and on the other professionals to watch out for these signs so we can intervene and support them through whatever the source of their distress is.

Here are the top five signs my children are struggling:

Sign number 1: Increase in meltdowns and shutdowns.

img_2186-1Behaviour is communication. No child (or adult) has a meltdown or a shutdown for no reason. They don’t just ‘feel like it’ or ‘want their own way’ as many have suggested to me about my children. For a child who has held it together emotionally all day at school, like a spring tightly coiled, is it any wonder when they finally reach a safe environment where they are free from judgement and pressure that they have to ‘let it out’? Autistic adults often have the same struggle as they are faced with working in environments that can cause sensory issues, social misunderstandings and continued demands placed upon them all day long.

Long meltdowns or periods of withdrawal and silence are alarm bells to me that something is troubling my child and I need to deal with it.

Sign number 2: Stopping eating

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This is something that my daughter does far more than my son who would eat his own bedding given half the chance! When your world is out of control and there are so few things you can control it makes sense to my daughter to control what she eats. I know right away if a child has called her names in the school playground, or she got an answer wrong in her spelling test as she will refuse to eat even the few foods that she loves.

 

 

Sign three: Mental health crash

It is blatantly obvious to me that my child is struggling when they tell me they want to die. When you misinterpret social situations, take language literally and face sensory bombardment daily is it any wonder at times that my child feels it is all too much? Signs of a mental health crash in autistic people are exactly the same as everyone else. I look out for not sleeping, loss of appetite, no interest in toys or activities they previously loved and wanting to be alone all the time. For my autistic daughter another sign is not having an obsession. When she tells me she is bored I always check if it is just simply boredom or if in fact her mental health is so poor she is unable to even think about doing anything. Lack of motivation, and no desire to please in my child is uncharacteristic and would make me want to investigate further.

Sign four: Increase or decrease in ritualistic behaviour

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My son has a lot of rituals. From when he wakes and has to bring down every cuddly toy from his bed to his arm chair, from the certain order things must be lined up at the side of the bath when he gets washed, to where he sits in the car..it all has to be ‘right’ or he gets distressed. I am familiar with his home rituals and school need to be fully familiar with his school rituals. If he suddenly stops a ritual he had always done, like the night recently he refused to get his nightly bath, I immediately knew something was wrong. Less than ten minutes later he had a seizure. He has no way of talking and his change of routine was a red flag to me that something was wrong. The need for order over and above the normal level makes me sense something is happening and they need help.

Sign five: Self harming

My son has a history of self harming due to severe communication difficulties and frustration but after a lot of support we have got this to a point where he is safe. However the first sign of him returning to making his skin bleed, or biting himself or banging his head against things repeatedly and I know he needs help urgently. He has no way of communicating pain so harming himself can sadly be his only way to show me his body needs help. It can also become a habit and a sign that his sensory needs are not being met.

 

When I hurt I have words, I have knowledge of who to ask for help and I have experience of being listened to and understood. Sadly many people with autism are not understood. They are belittled, mocked, have too many demands placed on them from a neuro-typical world and face sensory struggles every day. They perhaps find transitions difficult, a simple change in routine confuses them or they have misunderstood what someone said to them.

Just because what is troubling them seems trivial to you or me as a non autistics, does not give me or anyone else the right to say my children’s feelings are not valid.

We owe it to autistic children and adults to hear them and support them regardless how they communicate to us. Look out for these signs in anyone you know who is autistic.

It is often the case of actions speaking louder than words.

How one 9 year-old Described her Brother’s Autism in just a few pen strokes

There was nothing special about Thursday evening as I worked my way through the typical bedtime routine for my 9 year old twins. They had already had a bath, clean pyjamas on, eaten some supper and now they had moved into their separate rooms ready for stories, kisses and pre-sleep chats.

It’s hard to split yourself in two (or three, or four even if you are blessed with a quiver full) but my daughter willingly lets me see to her brother first most nights. She sacrifices so much for her autistic brother and this is just another example of how she puts his needs before her own daily. While she amused herself quietly with what I assumed was some colouring in or reading I continued on to settle her somewhat hyperactive brother next door.

I read the same story as always. He chooses the same story every night despite the fact he has a whole basket of books in his room. His autism means routines should never change and repetition is very much the name of the game. Unlike his sister he isn’t going to talk to me at bedtime about his school anxieties or fall outs with his friends. He has no friends. I have no idea what goes on at school (or anywhere he is out of my care) and at nine he has no spoken language. I hug and kiss him. I get nothing much in return. One day I might, but not tonight. I tuck him in, leave the room and turn off his light.

As I go next door to his sister her eyes light up as she clutches a little piece of paper to give to me.

“Mummy, I’ve been thinking about Isaac tonight. Can I show you something Mummy?”

And at that she handed me this:

I asked her to talk to me about it.

Mummy, these are the wires in my head. One is the talking wire, one is the brushing my own teeth wire, one is knowing my times tables in maths wire, one is knowing how to write wire, this one is playing with friends wire, this is the knowing how to read wire…”

She named all twelve straight lines she had drawn and said how for her, like most other children, she was able to do all of the things she listed. She talked about how some of her wires connect right away and others took time but they ‘knew where they were going’ and as she gets older and learns more ‘new things’ she will have ‘more wires that know where to go and connect up straight’.

I was amazed that a child could be so aware, so astute and so insightful. I let her continue on.

‘And this, I think, is my brother’s wires mum. He finds everything so hard doesn’t he? This is his talking wire mum. Look it goes to the connection for brushing teeth. No wonder he can’t talk when his brain gets confused like that! This is his writing wire…it’s supposed to be connected to the writing one at the bottom but instead it’s connected to the playing with friends wire. It’s all so hard when your brain gets confused but I know he is trying! I mean everything must be so hard when the wires are all jumbled up like this!’

I looked at her with tears behind my eyes. If anyone will advocate in life for her brother when I am gone it will be his sister. She understands him like no other.

My daughter knows I write. So I had to ask her.

“Naomi, is it ok for mummy to share this with other people? Is that ok with you?”

She smiled and in her usual determined way took the sheet back from me and pointed to her strokes again.

“Only if you make sure you tell everyone that it’s ok to have autism. Make sure people know Isaac does HAVE wires. He has a brain. He is trying. If I could make his wires straight Mummy I would, do you know that?”

I hugged her tight and kissed her forehead. She doesn’t want her brother to not have autism. I know that. She just wants to hear his voice, be able to play with him, brush her teeth beside him, write stories with him and practice her times tables with him like she does her friends from school.

She might want a brother with straight lined connections, but she could not love her autistic brother more if she tried, with crisscross jumbled wires and all the wonderful quirkiness that that brings.

Her understanding maybe over simplified in many ways but her fierce protection and love can never be denied.

I keep looking at that piece of paper.

She’s so right. My son is severely autistic with significant learning difficulties. He will need care all his life. But she’s spot on: he still has wires. He still has a brain. He can learn. He has potential. Life maybe much more confusing for him with wires that go different ways to what ours do but is that such a massive problem?

Maybe, just maybe, having straight lined connections in your brain is not for everyone. The world would be a very boring place if all our brains looked the same after all.

Three Reasons to vote for Naomi Gwynne in the National Diversity Awards

Have you heard about the National Diversity Awards? (http://www.nationaldiversityawards.co.uk/)

For those that haven’t heard they are a prestigious award ceremony for individuals, charities and organisations within the UK who are promoting and making the world a more diverse and inclusive society. They were launched in 2012 and have huge sponsors including Microsoft and endorsed by many celebrities.

I was aware of them through social media when both a charity I support and a friend I know where both nominated last year and I had the honour of seeing both get through to the finals and attend the awards night. It looked amazing!

Imagine my utter surprise then when a few weeks ago an email appeared in my inbox from the National Diversity Awards informing me that my 9 year old daughter had been nominated for this incredible award this year! In fact I was so shocked I had to call them up as I was sure someone had made a mistake! Besides I had never seen a child nominated before so was sure something had gone wrong. I cried on the phone when I was told that, yes, my 9 year old daughter had really been nominated and yes, of course, children could and would be accepted providing they met the criteria.

I am absolutely delighted and honoured to tell you that Naomi meets the criteria…at 9!

Now it is all about votes. When voting you will be asked your email address and the reason why you are voting for Naomi. So I want to give you THREE reasons why I feel you should vote for my daughter. Of course I am biased but let’s stick to the facts:

1. She single handedly forced the local council to make a children’s play park more inclusive for children with disabilities.

How did she do this? Well Naomi has a twin brother who has complex medical and developmental needs. When her local play park was redeveloped at a cost of £160,000 Naomi was so excited to go and play with her brother. However on returning home she announced she was ‘sad’ because she noticed right away that while she was able to use the new swings her disabled brother wasn’t. She watched as all he could do was place his cuddly toys in the baby swing and push them because he was too big for the younger swings but developmentally unable to use the traditional flat swings for older children. Of her own doing at just 8 years old she put pen to paper and wrote this letter to the ‘park builders’.

As her mum I was so touched I knew something had to be done. Her voice needed heard. All I did was photograph her letter and tweet the council. It was all Naomi’s thoughts, ideas and writing. Neither she nor I had any idea how a child’s letter would catch the attention of the media.

Naomi went on to appear in all the national and local newspapers. She was featured on ITV news, magazines and even as far away as RTN in Germany! None of this phased Naomi who was much more delighted to be able to push her brother on a suitable swing when one was finally installed five days after writing her letter.

This alone deserves her to win! That swing is now used by thousands of children, not only children with disabilities but children of all ages and abilities who are now able to enjoy the park better as a result of the action of one child’s compassion and determination.

2. She overcame her own anxiety to appear on BBC breakfast to help fight for children with autism to be allowed sensory aids when schools were banning them.

When fidget spinners were suddenly all the craze I happened to write an article about how lovely it was for children like mine ,who both have autism and sensory needs, to be included more. As schools began banning the aids because they had suddenly become the latest craze Naomi became quite angry. She was indignant that children with sensory needs should be punished just because a sensory aid had become a popular toy for everyone. So when I was contacted by the BBC and invited onto their flagship BBC breakfast show and asked if my children would like to come too Naomi was determined to not only come, but to show personally how sensory aids were useful for children like her and her brother.

This involved a long train journey, a stay in a hotel overnight and a very very early rise as we had to be in the studio at 6am for the live show. All of this would be a challenge for any 8 year old, but for Naomi who has autism, severe anxiety and selective mutism all of this change was massive.

She did it! She may not have been able to speak but she showed the presenters her sensory aids and was determined to be there to fight for the right of others like her to have aids they need. I was so proud of her.

She overcame her own fears and anxieties to help others. That’s incredible for anyone let alone a child.

3. She showed immense bravery and courage to open up and write about her own struggles with food in order to try and help others.

Naomi knew I wrote about her and her brother. She was always asked her permission before I published anything about her and she would read over and change anything she wished. When one day a friend asked if Naomi would like to write something herself and suggested she may like to talk about her struggles with food Naomi decided she was ready. She dictated her thoughts to me and made sure I was recording them exactly as she said. When she had read through what she has said and amended anything she wanted I then asked her if she wanted to keep it for herself or share with others. Her immediate answer was to share it because others may be worried about the same things and she didn’t want them feeling alone! So her first blog was published via my own blog and it went viral very quickly. To date it has been read by over 250 thousand people all around the world and helped so many to understand and empathise and therefore hopefully become more tolerant and inclusive of those who struggle with food and eating.

Have a read at her words here: https://faithmummy.wordpress.com/2017/08/07/the-reason-i-dont-like-to-eat/

I am sure you will agree that showing that level of courage and bravely to make the world more inclusive and understanding of eating disorders deserves recognition alone.

So there are my three reasons to vote for Naomi. Naomi has a comprehensive diagnosis of autism, selective mutism, anxiety and an eating disorder. She has a twin brother who has severe needs and is unable to talk. She lives with his challenging and unpredictable behaviour and his ever changing medical needs. Recently she has had to watch him taking seizures in front of her yet she remains calm, loving and gentle at all times towards him. From aged 5 when she started school she has stood out as a child with huge compassion and empathy using the skills she gained from living with her brother to help others. (https://faithmummy.wordpress.com/2016/01/15/the-day-my-five-year-old-changed-her-class-without-saying-a-word/)

She has achieved more in 9 years than many of us achieve in a lifetime.

I should not really have been shocked she was nominated for such a prestigious award but in my eyes she deserves to be honoured at any level.

If you agree and you would like to vote for her you can do so here: https://nominate.nationaldiversityawards.co.uk/nominate/endorse/31936

Thank you.

Even if she does not progress any further it is so good for her to know that her efforts are worthy of recognition and that people see that she really is making the world a more diverse and inclusive place to be..even at 9.

What if Autistic People were Actually in the Majority?

I am out numbered in my house. With three out of four of my family diagnosed with autism I am the only ‘neuro-typical ’ (fancy word for not being autistic). It means I am the only one who would actually want to break the routine to socialise with friends on an evening rather than sit in silence watching you tube after the kids go to bed and I would actually love to have a night without the same regimented routine the kids need to cope. I am not fussed about things having to be in absolute straight lines, I would not watch the same you tube clip a million times and I would happily have a shower at any time of day without it bothering me in any way. Having said that I do what it takes to keep us all happy and I adore the three unique and wonderful autistic people in my life and they continue to teach me so much daily.

However while in my house the ratio is 75% autistic to 25% neuro-typical the fact remains that in the real world the ratio is actually around 1% autistic to 99% neuro-typical. The bubble that is my home is vastly different to the world my husband and children need to function and live in.

This got me thinking: what if it was the other way around? What if 99% of the world were on the autism spectrum and neuro-typical (ha! That very name would need changed to start with since it would not be typical in any way) people were only 1%. How would the world change?

I asked a fantastic bunch of people what they thought the world might look like if it autistics were in the majority. I hope you are ready for this!

Here goes:

Lisa: I think my son would want Wi-Fi everywhere.

Gemma: Clothing would be optional, kinder eggs would be free, KFC would never run out of chicken. If clothing were on everyone would have to be dressed as a princess! Every meal of the day could be crisps and cream crackers or KFC. TVs would play the same film 582 times in a row.

Jo: My son would have clothing free school. Or no school at all, so he would never have to leave the house!

Emma: My daughter would have regulated temperature around 18 degrees at all times, ability to wear her onesie EVERYWHERE. Learning but not school!

Lisa: Endless supply of snacks and self cleaning clothes so he never needed to get changed and music playing everywhere he goes, the louder the better!

Ann: My son David would make every seat in the world a spinning chair. Anthony would get rid of all the speed limits – he loves driving fast!

Helen: I would ban networking, group discussions to agree on what to do next & small talk. In its place I would have guided introductions to people with similar interests, voting on next steps with options pre-assessed and written up, and using cards to pick topics for discussion when meeting new people. I would also remove subtlety from spoken language, and insist that people say what they really think or mean.

Jo: I think Z would love an endless supply of walkers crisps! Me as an autism parent for packaging to never ever change!

Helen: My son would ensure that everyone was trained up in Pokemon. He would also insist that there were only grey socks, baths were not daily and you don’t have to automatically say hi to people just because they are in the room.

Kelly: I have two asd boys, one said he wants people to say what they mean instead of making him guess. The other wants the world made of Lego!

Katherine: My son is 3 year old severe non verbal, but I’m sure he’d love tv’s with YouTube on 24/7, and a massive soft play area.My daughter is 6 years old and high functioning and she’d love Xboxs for playing Minecraft and watching YouTube. Plus swimming pools and places to play with other kids but with little calm down rooms when it gets to overwhelming. Oh and everything be literal and be routine based.

Miriam: My daughter would have everywhere the same temperature so she never had to put a coat on for school. She finds changing clothes so difficult!

Lucy: Me and my diagnosed 6 year old son were just discussing this yesterday…he said mummy for my birthday all I want is a day of silence (he’s very noise sensitive with high anxiety) although he never stops talking, so he said that he would be the only one who could make a noise.

Lisa: My boy would ask for no more schools.

Kat: My son would ask for water play everywhere and flashing lights (if he could talk more)

Sarah: My children would like everyone to stop picking on them because they’re different. I would like people to stop changing things so my routine can be the same.

Emma: My son would say that he would want the world to be none judgmental. Just because he has a illness and is a little different people pick at him.. even adults! So he would definatly say that.

Lisa: My little girl can’t talk but she would like to be surrounded by yellow teletubbies, you tube kids clips and McDonald’s chicken nuggets on demand!

Lesley: Bryan would want lifts instead of stairs and automatic doors installed in houses.

Andy: I would want everyone to just be straight up and honest. Uncertainty is the bane of my life.

Vicky: Meals to be served at set times. As soon as it gets to 12pn/5pm he wants to know where his meal is!

Sarah: Think my son would love to walk around with no shoes and socks on!

Jay: My son is 5 non verbal. I think he wishes everything and I mean everything was edible! And I think he would probably like the world to be a bit calmer, kids to be quieter and everyone to be more understanding.

Katherine: No fluorescent or flashing lights. Every place would have quiet areas to destress/calm down. Shops would not constantly rearrange their layouts. Everything with a visual guide. Also, as I’m a wheelchair user as well as an autistic, everywhere would be fully accessible.

Jessica: My son would have everyone say precisely what they mean, and explain any jokes afterwards to point out the obvious. You would also be expected to spend a large portion of your day playing PlayStation. You also wouldn’t be allowed to sit down whilst playing, you would have to march on tiptoes backward and forwards past the television because it helps you play better. You would also have a safe space in your house where you can go to re-kilter your brain after things have unexpectedly challenged your order of things.

Kirsteen: My son would love to live in a world where it isn’t assumed you have to socialise daily to be normal. And people wouldn’t change their minds, wouldn’t spring surprises and would generally do as he asks. And could there be mini trampolines everywhere please. And no funny smells.

Aria: I am autistic, I would like all animals to be allowed to walk our streets as if they was humans and be able to live in our houses and not just in wild or zoo’s

Sarah: Animals allowed everywhere with the same rights as humans! And school would be optional. With animals allowed to go with you. And a land full of hoovers and traffic lights.

James: All lights have dinner switches, paper towels in all public bathrooms to dry hands with instead of noisy hand dryers. People to not get offended by logic or different beliefs. All motor vehicles to be silent non polluting electric vehicles.

Every home to have a garden full of plants and trees (doesn’t matter it’s a communal garden just should be quiete).People to live BY logic not emotion.All unwritten social rules to be scrapped or taught in school to everyone. Everyone has a mute button to silence them. Everyone to understand what exactly I mean.For all clothes to be banned in summer and indoors (unless needed for safety).To get paid for doing what ever we enjoy doing. Everyone has a human looking robot butler or maid to clean up after them and do the things they forget or to remind you of them.

Charlotte: My son would make spinning a sport, with everything lined in order. There would be ample supply of turkey drummers and potato stars, and mince and dumplings.He would like to befriend all, not excluding anyone.

Emmy: Sam is 3 and non verbal but I’m fairly sure he’d like wheels on everything and “door parks” to go to where he can just open and close all kinds of doors all day long

Naomi: My son would probably like the whole world to be a nudist colony made of trampolines and soft, fluffy blankets.

Anon: I would like for the world to be less loud (both noise and visuals) I would also like to be able to be blunt and say what is in my head without having to filter everything to ensure I am being socially acceptable and meeting all the criteria that means people don’t realise I am autistic. I would like everyone to be honest and open so I don’t have to figure things out and if people aren’t your friends to just say that and not to pretend otherwise.

Leland: A one person at a time shopping mall.

Amanda: All of the lights (even the sun) would be dimmer, and the noises would be drastically turned down. I really want to turn down the volume of traffic! And everyone would be considerate of others.

Owen: People would drive around according to the rules. And people would walk according to the same rules too!

Julie: Everything and everyone would run on time, appointments, traffic, people and perfume and aftershave would be banned

Stephanie: Everyone would only speak the truth – there would be no lies or trickery. In fact it would be a much better world!

Ashley: Florescent lights would be illegal.So would car horns.People would also speak directly, none of that “not saying what you actually mean and expecting everyone else to hear the things you didn’t actually say and then getting mad at them for not knowing what you meant.”

Amanda: There would be no “insinuating” it simply would NOT exist.

Tina: I think it would be much easier for neuro-typical people to adapt to an autistic world than how it is now.

Shayne: My son would make all classes smaller and would have inside playtime instead of the large playground at school.Plus trampolines, swings and foam pits everywhere for whenever they are needed.

Alice: Every “team building” exercise at any orientation or job ever would be focused on nothing more or less than how to communicate with people who are different from you. No stupid “personality quizzes” or “medicine wheel” stuff or anything like that because they’re worse than useless to someone who’s used to camouflaging. Also every job description would have very specific instructions and skill requirements that never overlap with any other job description in the same organization.

Sarah: Non-speaking communication for everyone. Quiet spaces, where one can go for a few minutes of calm and peaceful quiet.

Lee: What would change with the world?Less bright lights. Walls would be sound proofed. People say what they mean.

Julie: Eliza would ban school from starting on any day that wasn’t a Monday after school holidays. Really annoys here when they go back on a random day like a Thursday.

Jonathan: There would be breaks throughout the day for twirling, running around, stemming, and naps.Classrooms would be smaller. Play time would be at least 2-3 hours a day. These would include swings, trampolines, slides, playing with animals, lining things up in a row, and most importantly Legos.

Well what do you think? Could you imagine a world like that? I can see so many positives in there that the world would gain from.

Autistic people may only currently be 1% but they have some significant and wonderful ideas we really need to listen to more!

Three Lessons an ‘Autism Mum’ Learnt From Meeting an Adult Autistic Advocate.

There is a huge chasm within the autism community between parent of autistic children (like me) and adults with autism.

I have experienced this first hand with many of my posts receiving hate comments such as ‘I wish you were dead’ and ‘you are a disgusting and vile human being’ and many more that are totally unprintable. Unfortunately some even crossed a line that involved me having to inform the police.

Sadly the divide is that bad.

Then there are autistic adult advocates themselves writing about autism from their point of view also getting hate mail from some parent of children with autism accusing them of having no idea how hard parenting is and not being able to see their point of view.

The divide is on both sides.

People have placed me firmly in the parents camp. That is natural since I am not autistic myself and I write as a parent of a very severe child who at 9 has no speech. I have been very frank in the past about how difficult and challenging I find raising both my children, but my son especially, and how I have ‘grieved for the things in life he will never be able to do’ and have even ‘wished I was no longer an autism parent’. (Previous posts of mine)

I stand by every post I have written.

However something happened recently that has really challenged me: I met a well-know award-winning adult autistic advocate called Chris Bonnello from Autistic Not Weird. I heard him speak for a few hours one afternoon and the next day welcomed him into my home.

On paper we should be arch enemies but in reality we are friends.

Chris had dinner with myself, my autistic husband, and my two autistic children. Boy was I truly outnumbered as the only non autistic person that night! We travelled in the same car together, ate together, he spend time with both children and then we had a short time chatting before taking him back to his hotel.

It was one night out of the 365 nights in the year yet it really affected me in a deep way.

I learnt so much that night but here are the three main things meeting Chris taught me:

1. The future is brighter for my children than I often think it will be.

In many ways I had planned my son’s future for him: there would be no marriage or kids and likely no job either. He would live with me at home and attend day care groups with people with profound learning difficulties. He would never speak and would lead an isolated, restricted life where few would ever genuinely love him. (This is not me being depressing this is sadly the reality for many like my son)

Chris spent one hour with my son and made me realise that other people CAN and WILL love my son and see his awesomeness.

When your child is very vulnerable it is very difficult to trust others with them. Chris showed me that there are people who will understand my son, respect him, and genuinely want to be around him.

It took an autistic adult to show me that someone will one day love my son as much as I do.

2. The most important thing I can do for my children is spend time with them.

It’s rare for someone to bond with my children so quickly. There are family members who have no idea what my children’s favourite colours are or what age they are. As I watched this incredible man bond instantly with my children by simply being with them it made me realise that whilst my children do need me to advocate for them, make food for them, keep them safe and clean and educated they also need me to just be with them. I don’t need a degree in speech therapy to just talk with them, and just stroking a sequin cushion can be far more fun that I think it will be.

I am a hands on mum and I do sit on the floor with my children playing with them often but then some days I am tired, feel pressured to keep up with the laundry and cooking and switch on the TV or give them iPads.

An Autistic adult entered my children’s world and made me realise how fantastic their world really is.

3. As a parent of children with autism I need to watch what I say and write.

I write and speak as a parent because that is what I am. I am not autistic and I therefore can not write from my children’s point of view. Having spoken with Chris I can see why some of my posts as a struggling, heartbroken parent have been hard for him and others to read. I want to stress that I don’t hate autism or anyone who has it and I love my children more than life itself. The spectrum is huge so when I say I am grieving for my child I am speaking as a parent whose expectations and desires have been ripped apart by having a child so disabled I may never hear his voice. That does not mean I do not love him; just that I need to adapt, not him.

When I say I do not want to be an autism parent anymore in a post I am saying I am tired and struggling with the weight and responsibility of the severity of my sons disability NOT that I want to abandon him because he has autism. As a writer and parent whose children will grow to be autistic adults I have a responsibility to make this clearer in my pieces.

I want to end with an apology to those my writing has hurt. I am finding this difficult because I am living life with two children who speak and think and communicate vastly different to me. I see anxiety crippling my daughter and my son unable to look after himself. I see everyday practical difficulties both my children will face in a non autistic world. I see their vulnerability and naivety and I worry. But please also know I see their beauty, their awesomeness and their incredibly personalities and gifts too. I don’t hate their autism I just struggle to face it myself as a non autistic person.

I need autistic adults like Chris from Autistic Not Weird to keep teaching me lessons and I want to hear.

There is a huge chasm in the autism community but sometimes autistic adults and parents of autistic children can actually make for a beautiful friendship indeed.

We can learn so much from each other.

If you would like to know more about Chris Bonnello you can follow him here: https://www.facebook.com/autisticnotweird/