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!

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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/