Raising Two Autistic Children and How It Has Affected My Weight

I have never been super model material and that hasn’t ever bothered me. Prior to having children I was a size 12 and my weight wasn’t anything I ever thought about.

I am not prepared to say what size clothes I wear now because I know I am over weight and now I think about it a lot!

At nine months pregnant with twins I weighted much less than I do now, ten years later. The years have not been kind to me that way sadly.

As a new mother my weight was the last thing on my mind. It went even lower on the list when I told the health visitor I had some concerns about my son’s development. At 20 months I took him to see a paediatrician.

That day the paediatrician first mentioned autism and I went home and ate chocolate…because we all know that HAS to make everything better don’t we?

I had secretly hoped my sons struggles with speech, his delay in reaching milestones, his need for routine, his lack of social skills and his continuing rocking was a ‘phase’ he would grow out of. I was struggling with him outside of the house(and inside too where he would scream for hours on end) so I slowly but surely stopped going to anything with him. No toddler groups to be embarrassed at with my screaming child, no rhyme time at the library to watch other kids his age singing when mine could not say a word, and certainly no church when he would never settle in crèche.

The isolation started to affect my weight.

If you are not going out and meeting people what does it matter what you look like? I coped with the isolation by making poor food and drink choices.

Neither of my children were great sleepers. My daughter would only sleep if nursed from the breast and my son could stay awake all night at 18 months and still have more energy that a Duracell battery!

The lack of sleep started to affect my weight.

When you are tired your whole body is lethargic. You haven’t got the energy to cook and wash up so calling a delivery from a take away felt so much easier. It seemed like one less stress to think about in the chaos of life with young twins who consumed me all day and night. Sleep deprivation also meant that if I did manage a supermarket shop I would always forget essentials out of exhaustion. It took less energy to open a can of fizzy juice to drink than to remember how to even make a cup of tea. I was that tired!

Then as the children started nursery speech and language therapists, early years workers and educational phycologists became involved. The thought of people coming into our lives and our home brought so much stress and anxiety that I would cry into my cup of tea while munching on a chocolate biscuit.

Stress started to affect my weight.

The stress of finding a nursery place able to meet the needs of a non verbal child in nappies at three who wasn’t yet walking. The stress of putting the children in transport when neither of them could say if they were being treated well. The stress of feeling like I was always being judged because my children were not like others would make me want to reach for cake and fizzy juice while the children were at nursery or school.

Outside of nursery or school I had no other child care. My son was still screaming at 6 and beyond and the children’s insistence on rigid routines meant I could never ever be away from them. Going to the bathroom caused my daughter to have a panic attack and my son to scream! Everyday was a repeat of the previous one and outside of school we never left the house. I felt I was letting my children down.

Guilt started to affect my weight.

I felt I must be to blame for my children’s struggles since I was their main carer. I would read about autism being genetic and cry myself to sleep. I would read about early intervention and courses and wonder if I was doing something wrong since my child was 7, then 8, now 9 and still not talking at all. I felt guilty asking the NHS for nappies for my child as if I was somehow stealing from them. I felt guilt I was unable to work and pay taxes. I felt guilt at not noticing the autism in my daughter until she too was diagnosed a week before her 5th birthday!

I coped with that guilt with more take always, hot chocolate and crisps.

Food became my comfort when my world was falling apart.

I lost my self esteem, self worth and pride.

It’s taken me years to accept my children’s autism. I have walked through the isolation, the lack of sleep, the stress and the guilt and though things are not without difficulties, I am in a much better place.

Then one day I realised: if I could accept my children’s autism then it was time to wake up and accept how overweight I really was and do something about it.

Now I am slowly trying to lose weight. It isn’t easy though as my children are just as autistic as they always have been. They still only accept me doing certain things, rely on rigid routines, require a very high level of personal care and still struggle with sleeping a lot. I still don’t have child care and we have an abundance of appointments.

But I am making better choices. I am exercising when I can and not ordering take always like I used to. Change isn’t something my children like and it was so easy to settle into our unhealthy rut and stay there.

But for the sake of my autistic children and for my own health I am now slowly taking control of my weight.

I don’t blame my children for my weight issue nor do I blame autism. It was MY reaction and MY choices combined with the social isolation, lack of sleep, stress and guilt that having autistic children brought that pushed me to seeking support in all the wrong places.

I know it’s not going to be easy but one thing having autistic children has taught me is that even when progress is slow it is so worthwhile.

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I Used To Worry About My Autistic Child’s Future Until I Met An Adult Just Like Her

All parents worry about their children: Will they make good healthy choices? What if they get hurt? Will they have friends? How will they cope with handling money? Will they be safe?

It’s standard parenting really to worry.

That worry is amplified if your child is autistic. You worry even more about them misunderstanding language, making friends, and being independent because they are more vulnerable and different to their peers, and because society isn’t yet as accepting and embracing of difference as it should be.

I worry about both my autistic children but for very different reasons.

My son is profoundly autistic. He is, however, likely to have the support he needs throughout his life because his needs and difficulties are very obvious to people. The fact he has no spoken language, he has significant medical issues and severe learning difficulties on top of his autism mean that my worries for him are more about will he carers look after him, will he be understood, will he be respected and so on.

With my daughter, who is also autistic, but who has no accompanying medical issues other than anxiety (which is huge and I would never underplay that), and certainly no learning difficulties, my worries are very different. I worry about people taking advantage of her when she is socially naive to their motives. I worry wether she would manage a work environment with her unseen and often misunderstood sensory difficulties. I worry that her communication difficulties and social anxiety will mean she is isolated and unsupported. I worry that her naturally caring nature and very tender heart would mean she is vulnerable to bullying and cruelty.

I try to never let her see my worries but they are always there. When she struggles with change at school on days like sports day or comes home in tears because she had been unwell and unable to tell anyone. When her anxiety is so high she has panic attacks and nose bleeds and I am powerless to make everything right.

She worries about everything and I worry about her.

Then I met Tom on a social media group. I say ‘met’ him but he was a stranger posting on a group both by commenting on posts relating to my daughter (and other posts too) and writing his own posts. Very quickly to us both it became obvious that Tom and my daughter had so much in common. Examples included little things like the fact:

1. They both preferred to sit on hard surfaces like the floor instead of traditional furniture like armchairs and sofas. Naomi spends hours a day, often all day, playing on the floor. It turned out Tom does that too but as an adult to relax in other ways like watching TV.

2. Naomi really struggles with needing personal space. She builds barricades out of toys to create circles around her that no-one can enter. Tom struggles with personal space at work in a similar way.

3. Naomi takes language literally timing me for example if I was to say ‘I will be back in a minute.’ Tom was struggling with the same thing and mentioned misunderstandings at work and with his family due to the same literal understanding of language.

4. I mentioned in one post that Naomi was terrified of flies, wasps, bees and any other small flying creatures. Tom was reminded of the time his parents told him he was so scared of bees he refused to get out the car.

5. Both Tom and my daughter would rock to self soothe.

I could go on but the resemblances continue to grow the more Tom posts about his life and the more he reads about my daughter.

Coming across an adult who is so like your child is incredible. It gives me hope when I once had worry, it excited me when I used to fear and it inspires me when I was once disheartened.

I know Tom isn’t my daughter, but with so many similarities I feel we were meant to meet to ease my worries. You see Tom is independent, he has a full-time job, he has friends, and though he struggles with isolation at times he never loses hope and he never stops trying. Of course he still has struggles but he did well educationally and he has achieved in so many ways. He lives the sort of life I hope my daughter might have one day but yet I worried wether it would happen.

Tom only found out he was autistic as an adult. My daughter was diagnosed aged 5. Tom doesn’t live in the same country either and his family life and dynamics are different. Yet the similarities are just enough to make me feel encouraged. What is even more important though is that hearing about Tom is helping Naomi.

While my daughter isn’t on social media yet I have been telling her about Tom. She is amazed at the similarities (have I mentioned Tom even shares her birthday?) and so encouraged to hear that while he may have some struggles (don’t we all, autistic or not?) he is achieving, happy and doing well.

She may never meet Tom but that doesn’t matter. We don’t have to meet people in person to be encouraged or inspired by them.

My daughter will one day soon be an autistic adult. Hearing about an adult just like her has been life changing for us both.

Thank you Tom.

I used to worry about my child’s future until I met an adult just like her.

If only every autistic child could meet an adult just like them too. Believe me when I say it really is life changing.

Five Surprising Skills Autistic Children May Struggle With (and tips to help them)

Even before my children were diagnosed as being on the autism spectrum I could see that they were struggling with certain things. The truth of the matter is we all struggle with different things in life and we all have strengths and weaknesses.

When I researched autism I could see so many of the difficulties my children had fitted with the diagnosis like not giving eye contact, not responding to their names, having repetitive play or movements, struggling with communication (speech in particular), and not understanding the play and actions of their peers. However some of the things they struggled with seemed initially to be unrelated to autism but are in fact much more common among those on the spectrum than those who are not. The following everyday skills are not part of the criteria for autism and neither are they things that every child with autism will struggle with but if you have a child on the spectrum you may relate to some of these struggles with your child too.

1. Blowing their nose.

Over the years on autism support groups (online and in person), this seems to be a common struggle for many children on the spectrum. There seem to be a number of reasons why this skill can be hard to learn including understanding the concept, sensory issues and developmental delays. My twins are now 9 and still neither of them understand or have the ability to blow their own noses! For my son the whole ability to understand and follow instructions is a huge struggle and for his sister it’s much more sensory and developmental.

Some tips for helping your child (preferably when they don’t actually need to blow their nose so they can avoid the added grossness of snot!) develop this skill are:

* Using a straw to practice blowing so they understand the terminology,

* Encouraging blowing from the nose gently with the mouth closed.

* Making nasal sounds like ‘Choo’ from the nose rather than the mouth.

* Use a smell that could endure sneezing such as pepper (though always do this under very close supervision)

2. Tying Shoelaces.

It should be noted this skill is not usually developed by any child until around the age of 7 or 8 though for children on the autism spectrum is is often much later. This is due to so many factors such as fine motor control difficulties, sequencing difficulties, co-ordination difficulties and sensory issues involved in pulling the laces tight enough.

If your child is struggling with this don’t panic. Here are a few tips to help:

* Try showing them from behind them as showing on your own shoes will actually be a mirror image of what the child needs to do and this could cause the child to become confused.

* Use visuals to follow showing what the laces look like throughout the process therefore breaking down the language issue and sequencing difficulties.

* Watch YouTube videos of different ways to tie as there may be a way that makes it much easier for your child to grasp independently.

* Invest in self trying laces or elastic laces so that tying isn’t necessary.

* Buy shoes with Velcro or other type fastenings to avoid the need for shoelaces altogether.

3. Hand Writing.

Not every child with autism will struggle to have legible and neat handwriting. My daughter is a perfectionist and her handwriting reflects this, but for many children it is a huge struggle. Some of the reasons for this are lack of motivation, fine motor difficulties, sensory issues with holding writing utensils, processing speed and sometimes other learning difficulties such as dyslexia. Some ways you can help your autistic child with this include:

*Use technology to help but having apps that include letter formation and encourage the child to use a stylus in the same way they would use a pencil or pen.

* Make it fun by playing games or drawing pictures to take the pressure off the child.

* Allow the child to type instead of using handwriting for some tasks so as not to inhibit their creative expression too much by taking the onus off the physical ability to write and onto the actual content. (As adults how often do we actually hand write now?)

* Experiment with different media and materials such as pens, crayons, or paint, to help bypass any sensory issues.

* Stay encouraging! While handwriting is a skill we all need it is less essential than ever for future employability these days.

4. Continence related issues.

Many children struggle silently with continence related issues and many parents are embarrassed to talk about things like bed wetting. While some children, both autistic and neuro-typical, may sail through potty training many will struggle. It is ‘normal’ for many children on the spectrum to have a delay of some sort in this area either by not being developmentally ready in line with their peers, having huge anxiety about one or several areas of the task, having sensory issues around bathrooms or underwear, or struggling with the social awareness of it all. Don’t panic if your child is one of those struggling and don’t feel you are alone. Here are some ideas that may help, though if you feel there could be any underlying medical issues or if something has recently changed with toilet training in any way do seek medical support.

*Try using visual schedules outlining the stages involved in the skill from understanding the need, sitting on the toilet, cleaning up and pulling clothing back up. It may take much longer for someone on the spectrum to sequence naturally so be patient.

* Eliminate any obvious sensory issues or barriers by having something for the child’s feet to rest on while on the toilet so they don’t feel they will fall, empty any smelly bins, having the room calm and tidy and if using a public toilet try and find one without noisy hand dryers if this is a trigger.

* Go often and make trips more routine rather than waiting until urgent. Many children on the spectrum thrive with routine so having regular routine visits can take away stress.

* If your child is socially nervous having a card or code they can use to be excused from school lessons to go could make things easier than having to get the teacher’s attention and communicate the need verbally, all of which can be immensely stressful for some autistics.

* Don’t expect a smooth ride! Change in routine, high anxiety, family change in circumstances and even hormone changes can affect toilet training so much.

* Be respectful always. Don’t laugh at accidents or mention struggles in this area with your child as it could damage their self esteem.

5. Sleep.

No-one told me my son’s severe difficulties with sleep could in any way be related to his autism! A quick google or chat to parents of autistic children and it isvery obvious just how common sleep issues are for anyone with autism. These issues range from inability to settle to sleep, inability to stay asleep or inability to get back over to sleep therefore waking extremely early. Sleep is vital for our mental and physical health and lack of it can have significant effects such as memory loss, fatigue, ill health, poor diet, inability to focus, irritability, mood swings and weight gain. There are a number of key reasons why it is thought autistic children and adults find sleep a struggle and these include anxiety, sensory issues (around clothing, bedding, lights and noise), hormone issues, lack of time awareness and different bodily needs. My son can function very well on four or five hours sleep for example while I can’t!

Some ideas to help your child with sleep:

*Having a clear routine to help establish time and expectations.

* Using visuals such as a grow clock or nightlights.

* Physical and environmental factors such as black out blinds and toy free bedrooms to remove distractions.

* Background noise such a while noise (hoovers/fridges/freezers etc) which can be calming for some or perhaps quiet, peaceful music.

* Technology free time before bed to avoid stimulating the mind too much prior to sleeping.

* Some parents choose to use natural products like lavender oil or prescription medication from paediatric doctors such as melatonin.

These are just five things I was surprised my autistic children struggle with and I could have picked so many others like riding a bike, regulating their body temperature, and even dressing themselves.

Don’t underestimate your child though. If there is one thing my children have taught me about autism it is this: they may struggle in some areas but they excel in others and they bring me untold joy daily.

Have you related to any of this? Feel free to share!

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.

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/

Three Ways my Autistic Children (and husband) Struggle with Literal Thinking that may Surprise you

A quick google of ‘autism’ and you will read the fact that people with autism often have very literal thinking. They take the meaning of things exactly as written or spoken and therefore struggle with things like sarcasm, jokes and idioms. What people often don’t realise though is that literal thinking goes way beyond this and can affect autistic individuals in ways you may not even expect.

I have an autistic husband and two autistic children so I see how they interpret the world daily and how literal thinking affects them in quite surprising ways.

Here are my top three ways and how I have helped them to understand what they really mean.

1. Food packaging.

Last week I needed to pop into (there I go again using a funny saying that my kids would take literally. For the record I never went pop.) a frozen food shop. I had the children with me and so I let them chose something for dinner. My non verbal son chose these sausages.

I have learnt to not ever let my son see frozen food coming out of the packaging after one particular long screaming match when I realised he could not understand why the frozen chicken nuggets cane out the packet cold and pale when the packet had them brown and warm?

So I cooked the sausages and made some potatoes and baked beans for my son only to have him scream in frustration because he assumed the picture on the outside of the bag would be EXACTLY how his dinner would look that day. He took the serving suggestion as literal.

My son has learning difficulties as well as autism so I can’t just explain the concept of ‘serving suggestion’ sadly. Instead I now google what I am making and show him an image as close to what his dinner might look like rather than allowing him to see the food packet.

It’s not even just frozen food either! One day I remember buying a new wok when my son was 6 and he was flapping with excitement when we brought it home only to scream for hours when we opened it because none of the food on the box actually came with the wok!

2. Shopping

Clothes shopping is always something my daughter finds confusing. She is very small so clothes for her actual age are way too big for her but she can not grasp the idea that I could buy age 7-8 year old clothing for her when she is actually 9. If she is with me she will put back the clothes that fit (even if she has tried them on and liked them and they fit well!) simply because they are not for her actual age! She is every bit as literal with books and toys and when she saw a toy she really wanted recently and the box read ‘aged 4-8’ she burst into tears in the aisle because she was convinced she could not buy it since she was 9. She assumed as there was an age on the box that she would be asked at the checkout to ensure she was the right age before she could buy.

I have had to come up with social stories to help her understand that ages are only guidelines and do not have to be exact. It’s a slow process though!

Shop names are another source of confusion to my literal thinkers too. Even my husband recently told me at the grand age of 60 that he never could understand why Boots does not actually sell boots? My nine year old daughter is still totally convinced that the body shop sells bodies and that poundstretchers actually stretch pound coins! The Orange shop confuses her because they actually sell phones that are not just orange and she also gets angry at Pets at Home because the pets are definitely not at home they are in a shop! And of course Subway should be a transport stop and not a sandwich outlet!

On a walk to school just yesterday we passed some flats for sale and she asked why anyone would want to buy an Igloo (a national estate agents) and if the house Purple Bricks were selling actually had purple bricks?

I have to admit that although these stories are funny now it really opened my eyes (another phrase my daughter would get confused at!) to how confusing the world is if you take everything literally!

So how have I helped my daughter with this? Well we have a piece of paper now where we write down funny shop names and funny signs we see so I can explain them to her. I am just ever so grateful she has yet to ask about the shop called Virgin!

3. Everyday phrases we all use.

With three people in my house having autism I have had to really think about my language. While I understood they would struggle with obvious idioms like ‘it’s raining cats and dogs’ I took it for granted they would realise me saying I was ‘just jumping in the shower’ meant I was having a wash rather than trampolining in the shower! For the very same reason I never ask my kids if they would ‘jump in the car’ because…well you can image can’t you! Other common ones I have been caught out saying was ‘it’s been a long morning’ to which my daughter quite rightly corrected me with the fact every morning has in fact got the exact same amount of hours in it! I told my husband the other week I was just going to ‘fix dinner’ to which he asked me how I had broken it? We never go window shopping either unless we literally want to buy new windows and asking my daughter ‘what’s up?’ would have her genuinely answer me with ‘clouds, sky and aeroplanes’. She is technically correct of course!

Thankfully there are some great books now to help children (and adults) understand what many of our common idioms actually mean including ‘It’s raining cats and dogs’ by Michael Barton. You would be surprised how many idioms we all use without thinking!

There is so much more to literal thinking that just struggling with jokes and sarcasm. It perpetuates all aspects of daily life, communication and socialisation and everyday I am reminded how beautifully pure and literal my family understand and see the world.

I will leave you with two questions my 9 year old asked me just this last week that have taken rather a lot of explaining:

Mum, the cafe says they sell all day breakfast so why is there no Rice Crispies on the dinner menu?’

This doesn’t make any sense Mum! The sign says plastic bags cost 5 pence yet this roll of bin bags is £1 for 10. Are these not plastic bags too?’

If you want to follow more of daily life with my family do please pop over and like my faithmummy Facebook page where I now share more than you will get to read on here. I also make a weekly Facebook live on a Thursday evening. It would be great to have you join me!