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/

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Autism: When Mid-Spectrum Often Means Misunderstood

My husband has autism.

My son has autism.

My daughter has autism.

They are all very different yet very similar.

My husband is considered ‘high functioning’. He can drive a car, shop on his own, has lived independently in the past and been employed. He was not even diagnosed until 59 such was the level of his functioning. He, of course, still has his struggles but to many at first glance these are not obvious.

Then there is my son. His autism is extremely obvious and he would be known to many as ‘low functioning’. He has no spoken language (non verbal) and is not potty trained at 9. He requires 24-7 support and will always need this throughout his life. He has significant learning difficulties and can not write any letters or numbers nor can he read. His cognitive function is that of a baby in most levels and at best a child of around 18 months though his physical body is 9. He has other co-morbid conditions too including the genetic donation NF1.

Then there is Naomi. Mid spectrum and misunderstood.

Not severe enough to get on-going support.

Not severe enough to receive speech and language.

Not severe enough to have any legal educational support plan.

Not severe enough to be entitled to 1-1 support at school.

Not severe enough to get a placement out-with mainstream school.

Not severe enough to be able to access Occupational Therapy.

Yet:

Not high functioning enough to manage without ongoing support.

Not high functioning enough to not need speech and language. In fact as a selective mute child she desperately needs support!

Not high functioning enough to be coping without a legal support plan yet this seems to be a never ending battle to convince education!

Not high functioning enough to manage all day every day without 1-1 support, although she is being forced to as no-one seems to see her struggles!

Not high functioning enough to manage in mainstream fully yet there is no other options available. She is in the strange position in that mainstream is right for her 75% of the time yet there is no support for the times she really struggles.

Not high functioning enough to get occupational therapy despite still struggling with everyday skills everyone else in her class is able to do with ease.

So she is left. Misunderstood and ignored.

What about all the thousands of children with autism who have no learning difficulty but have mental health struggles by being made to fit into a round hole when they are not round? What about the children able to mimic and hide themselves within a mainstream class but who still have massive sensory issues and social struggles?

What happens? Let me tell you in my experience what happens to these ‘mid spectrum’ kids:

Their mental health suffers from being misunderstood and being expected to be ‘normal’.

They become masters of the ‘hold it together’ club and then explode at home from not having the necessary support needed all day at school.

They lose confidence as they struggle to make and maintain friendships without anyone able to help them.

Some develop challenging behaviour as a result of coping with demands to not be autistic all day.

Some go on to feel ashamed of their autism yet they are not ‘high functioning’ enough to be able to hide their traits.

A growing number are now leaving mainstream school and being forced to be home educated as there is nowhere else suitable for them.

Many ‘fall through the net’ and by the time they reach teenage years they are lost in the system and even more misunderstood.

Not everyone with autism is able to be like my husband and make it through life without strangers noticing anything different (I say strangers as anyone close to my husband is able to see his difficulties) Equally not everyone with autism has learning difficulties or is non verbal.

Most people with autism lie in the invisible, misunderstood area, known as mid spectrum. It’s sort of like having one foot in one world and another foot in another world. Sometimes their autism is obvious, sometimes you would struggle to see it. Sometimes they are comfortable being with neurotypical people (those of us not on the spectrum) and sometimes they are much more comfortable being around their autistic peers.

Caught in the middle.

Very much autistic but able to (sort of) live in a neurotypical world for periods of time.

Mid spectrum autism: for many that can be summed up as misunderstood.

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!

How a Stranger’s Advice Helped my Autistic Daughter Overcome her Eating Issues

My daughter has always had struggles with food. From the moment she was weaned she has refused, spat out or thrown food away. Her weight has always been a concern yet no-one seemed to take me seriously.

That was until she was diagnosed with autism just before her 5th birthday and on her diagnosis letter they wrote about her limited diet and sensory avoidance with food.

I was so excited a year later when we finally received an appointment with a sensory trained occupational therapist for children with autism.

I was sure this professional would help us.

We tried everything she suggested. We did so many different ‘desensitisation’ activities like messy play, baking and play doh. We had fun with plastic food and real food and we looked through recipe books together.

Yet her eating remained as restricted as ever and her weight continued to drop.

Eventually the appointments drew further apart until there was nothing left to suggest.

If anything we had dropped foods and my little girl was living off small amounts of cows milk, licks of chocolate sandwich spread, peppa pig spaghetti and cheesy pasta from a well know pizza restaurant.

Then at 6 years old she became very ill with pneumonia and stopped eating altogether. It was terrifying! By this time I had managed to get her to drink one brand of orange squash to keep her from dehydration but then the manufacturers suddenly stopped making it and I broke down on the phone to them. (https://faithmummy.wordpress.com/2015/04/17/to-the-woman-on-the-helpline/)

I was watching my own daughter starve herself.

Miraculously we got through it but her eating was as restrictive as ever and we had an urgent referral to child and adolescent mental health. By urgent they really mean three to four months by which time things were at true crisis point. There was no fluid or food consumed the entire school day at this point and very little at home either.

We did everything that was suggested again. We dished up what we were having on a side plate but ignored it if it was refused. We lessened her anxiety by allowing technology at the kitchen table and gave basic food choices. We tried being strict. When that failed we tried being lenient. Nothing changed.

A year later child and adolescent mental health withdrew too.

We then saw a dietician whose plan was supplementary drinks. My daughter refused to drink them.

There were no professionals left to try.

We did everything the professionals suggested and still we could not get my daughter to eat.

Then one day I was chatting to an editor of a site I write for. She asked if I would write a blog for the site but she had a radical suggestion that changed everything. She asked if I could ask my 8 year old daughter why she didn’t like to eat.

A stranger suggested something simple but incredible: ask the child.

So I did. And she told me this: https://autismawareness.com/the-reason-i-dont-like-to-eat/

The site published the piece and it went viral. Thousands upon thousands were touched by the private thoughts of an 8 year old who struggled with eating.

Rachel had never met my daughter. She has no professional training in autism or eating disorders. She is not sensory trained nor a child phycologist. Yet her advice was so simple but life changing. I will never be able to repay Rachel for saving my daughter’s life.

It’s now seven months since that blog was written. When my daughter wrote that she only ate a tiny amount of foods. Her BMI was less than 14 and her weight was on the 0.74 percentile. In other words she was not even on the chart and she was dangerously underweight! She was pale and ill looking with dark circles under her eyes. She had no energy and her mental health was poor. There was a whole lot of talk about feeding tubes.

Naomi’s post reached over 282 thousand people just on the one site. Most importantly though it reached down into my heart. I read and reread her thoughts and radically changed how I fed my daughter.

I took meals to where she was.

I let her eat in whatever way she felt comfortable.

I made sure food never touched.

I stopped nagging her to eat.

I bought and cooked what she liked the way she liked it.

We stopped eating at the kitchen table and let her eat while watching you tube or TV.

Seven months later and no-one is talking about feeding tubes anymore. Her BMI is now 15.4 and she is on the 4th percentile on the chart for her weight. She now has twenty items she will eat compared to four seven months ago.

My daughter still has an eating disorder. She still has autism. But we are making progress thanks to one stranger’s life changing advice.

What can we all learn from this? Listen to what the person you are trying to help is saying. Really listen. What works for one person is not always right for another.

Oh and always be open to advice…even if it comes from a stranger!

Rachel holds a very special place in my life. She was the stranger who helped my autistic daughter overcome her eating issues.

There is no payment or thanks ever enough for something like that.

How an Accident Broke my Autistic Son’s Trust

My son has autism. He also has learning difficulties and no speech. I am not going to lie; everyday is a struggle. He is 9 now and slowly we have learnt strategies that help both him and the rest of the family cope.

We have learnt to use visuals to aid his understanding.

We have strict routines for school mornings and bedtime.

We use ‘first/then’ so he knows that one thing follows another.

We use social stories.

We give him plenty of time to process what is happening and what we are doing.

We let him chose between no more than two things because anything more confuses and stresses him.

We get by day to day. We have screaming and frustrations but by and large we stumble through.

But what happens when an emergency or a crisis happens and you have no time to do any of the above?

Two weeks ago I was driving my car on a very fast road with my son with me. I have been driving for over twenty years and never been involved in an accident. I explain to my son hat was going to happen using words and visuals. I was picking up a family member then we would get his sister from gran’s house and then go home. He screamed at the thought of transitioning from his comfy seat at home with YouTube on his iPad to having to sit in the car. I was patient and gave him time to process. I strapped him in and made sure he was comfortable and then I set off.

It was all going exactly like I had explained to my son in his social story. It was such a simple story with a photo of mums car, a photo of my brother’s house, my mums house, his sister then home. That was how it was all meant to happen.

Except it didn’t.

On the journey home we were unfortunately involved in a major car accident. That wasn’t in the ‘first and then’ or the social story and there was certainly no visual of my smashed up car and inflated air bags!

This is when non verbal autism is serious. In an emergency situation how do you help a child with severe autism and limited understanding cope?

How do I explain he can’t get out of the car when cars are speeding past us at 70 miles per hour? How do I know if he is injured from the crash or even in shock? He just sat there in total silence.

When the paramedic first arrived he asked my 9 year old his name. My son never answered. He asked him his age. Silence. My 9 year old has less language than an average 1 year old and all of a sudden the reality of that crushed my heart. The paramedic then asked me if I had an idea if my son was injured. He can’t even point to parts of his body in the nursery song ‘head shoulders knees and toes’ so how on earth can he say if he is in pain or where?

All three lanes of high speed traffic were halted while my car was pushed over to the hard shoulder for safety. To my son this was wonderful! He thought the car was moving again and I should get in and drive him home. That’s what was in his social story after all!

If I thought getting my son out of the house and into the car an hour earlier had been hard I had no idea! Now I had to get my son out of my smashed up car and into the back of an ambulance. He has no concept of what an ambulance is. He was not for getting out of my car.

Autism is hard. In an emergency autism can be impossible!

I could not suddenly show him visuals. I had no pre-prepared picture story. I could not give him adequate time to process! His life was in danger and sadly I had no choice but to pull him out that car and drag him into that ambulance. I wish he could understand why I had to do that but I don’t think he ever will.

My son is ok. The next day a lot of bruising appeared but thankfully it was all superficial from his seat belt. The real damage though is to his trust and no-one can give me any idea when that will heal, if ever.

While my injuries will heal over time (ligament damage and bruised bones) I can at least understand what happened.

My son with autism has no concept of ‘emergency’ or even ‘different’.

He won’t entertain any social stories now. He just screams when we say ‘first and then’ and he throws away all the visuals we have.

He can not process the fact that an emergency happened and things had to change.

A friend said about the accident ‘thank goodness nothing was broken except the car’.

Sadly the crash broke much more than a vehicle.

An emergency situation broke my son’s ability to trust me and there is no insurance that will cover that.

Why I will no longer attend anything at my autistic son’s school

I don’t want to be one of those parents that never turns up for anything at their child’s school, but next year I can assure you that I will be that very parent. I won’t be at any parent engagement events, or school shows and I will be avoiding assemblies like the plague! I won’t even be at parents night and my child won’t even see me at the annual achievement assembly either.

I am not a bad parent though, far from it.

This is NOT what I want but I have come to the conclusion it really is for the best.

In fact making this decision has broken my heart.

Yet my New Years resolution to not attend anything at my son’s school is one New Years resolution I fully intend to keep.

Why? Well because it is what my son wants.

I never thought my child would want to be the only child in the school nativity without his mum or dad sitting proudly watching. I never thought my son would want to collect his annual achievement award with no-one to cheer him on. The thing is though; I am not autistic, he is.

He sees the world very differently to me and this is a great example of that. I see his school as somewhere I want to be highly involved with and engaged with. I want the emotional feeling of seeing my only son being on stage and taking part in things I never thought he would be capable of. I want photographs and memories to treasure of him dressed in costumes and joining in. I am really wanting it all for me. Isaac though sees things very plainly: mum belongs at home not school. End of.

Seeing me at school, for whatever reason, causing him far too much distress. That distress, confusion and even anger, has now built to a point where it is no longer safe for me, or for staff, to have me at school events. Isaac gets so upset at seeing me and so anxious he can harm himself and others. That distress lasts a long time as he just can not process the fact I have appeared somewhere that, in his mind, I should never be. When he comes home from school his anxiety is set off again as he sees me back home and he must wonder how I was at his school 14 miles from home just a few hours before. He doesn’t have the cognitive or processing ability to understand fully that I could drive there and back (after all he never drives so how could I?) and the whole evening becomes challenging for the whole family. Things get thrown, broken, we get screamed at and he is in obvious distress. We can not ‘talk it through’ since at 9 he has no speech at all. It is awful and heart breaking for everyone.

So I have had to lay aside my own desire to see my child at school. I have had to take the very difficult decision to never see another nativity play he is in, or visit him in his classroom. It is even harder when I know he is actually excited to see other parents do these things…just not his own mum.

I could disguise myself and sit at the back of the hall I guess but what if he did somehow see me? Is it worth the upset it causes him?

I will continue to support his school by sending items in, communicating via his home school diary and giving money as required. I want much more, of course, but I hope they understand that this is the best way now. I pray they take photos that I will never be able to take and maybe even record events on video if possible. It won’t be the same as being there for me but what can I do?

I miss out on seeing my son do so much already. I miss out on hearing his voice, or teaching him to ride a bike, or even playing a simple game with him. I just never thought I would miss out on seeing him at school too.

New year, new term, and a new way of putting my son’s needs before my own.

This is the right thing for my son, for his sister and for the whole family. I have tried for five years but that’s it over now. From now on I will no longer attend anything at my son’s school and for us this is hopefully going to help make the next year more manageable and pleasant for us all.

Sometimes though I just wish autism was a little less hard on my heart.

Christmas for Autistic Adults: What is it really like?

Three weeks ago my husband received a detailed written report which stated clearly that he was indeed autistic. Of course he always has been autistic but as this is his first ‘official’ Christmas as an autistic adult I thought I would dedicate this special blog to the millions of autistic adults who inspire me, encourage me and motivate me to do the best and believe for the best for my two autistic children always.

I have to be honest and say both my children struggle with Christmas and I wondered if that got easier as a adult.

I asked Lisa how she manages Christmas both as an autistic adult and a parent of two children with autism.

I love Christmas and spending precious time with family. Family that I’m comfortable with. I love the events we have over Christmas but at the same time seeing people I have not seen in a while can fill me with anxiety.

It’s like I try so hard, too hard for it to be perfect. And that’s when my obsessive behaviour kicks in. I have to have everything looking just right. I want to attend so many sensory related events with my close family, the ones I’m comfortable with. When they don’t share my enthusiasm it brings me down.

I like to have set people around me and if they aren’t, it makes me anxious.

So as much as I love Christmas and everything that goes with it, i am often accused of trying ‘too hard’. Trying too hard to organise everyone, and pleasing everyone. I build myself up and sometimes I get overloaded with it all.

Social expectations and anxiety was something Chris from (http://autisticnotweird.com) also touched on too:

As much as I love Christmas Day (and speaking as a practising Christian too), it’s surprising how little I love Christmastime. The day itself is usually wonderful, but it’s preceded by a boatload of expectations- some of which you can’t match, some of which are unclear.

Worst of all is the expectation that everyone MUST be happy in the run-up to Christmas – including those with mental health issues. And not only that, but you must express that happiness in very specific ways. (Even on the day itself, it’s a time when getting drunk at midday is seen as acceptable but if you check Facebook to see your friends enjoying themselves, you’re being “antisocial”.) And having to do a hundred things “because it’s Christmas” has never struck me as a good reason to make yourself stressed- honestly, I’d rather celebrate Christmas in a way that helps me to access the beauty of the season rather than the social expectations. I’m pretty sure that’s what Jesus wants too.

Social events can be a struggle for many with autism at any time of year but the extra pressure of so many events can be overwhelming even as an adult. I love how Nikki from http://www.spectrumgirls2.com describes the after effect of so much socialisation as a ‘social hangover’ as this is something I see in my own kids regularly.

I do love Christmas, I think it’s magical and it reminds me of fond memories when family all got together when I was a child. I must admit I do get very overwhelmed with it all as there’s a lot of preparation required on top of being a very busy parent carer.

I find the shops so busy this time of year, music, crowds, lights and I try and avoid taking my girls into crowded shops as many people don’t realise I’m having my own sensory overload as well as trying to cope with both my girls getting overloaded. I do a lot of online shopping. With events like Christmas fairs, nativities, meals, I will cope during the event but will feel emotionally drained afterwards, I often need to go and lie in a dark room and find it difficult to talk after busy events. I’ve heard this being described as almost like a ‘social hangover’ amongst adults on the autistic spectrum. I do a lot of avoiding if I find something quite heavy going, I’m not keen on the wrapping of presents so I do put it off a lot! One of the more unusual feelings I get every Christmas time is a slight depressed feeling of ‘fear of missing out’ which is something that I’ve only just recently found out about. It’s a feeling that my children are missing out on experiences such as visiting Santa, etc but then I have to take a step back and think that experiences like this are not always positive due to my youngest having a fear of Santa, we have to do what is in their best interest.

Helen from http://www.lifeandasc.com echoed some of those same thoughts:

I love Christmas but in small measured social doses (I prefer to limit social events to 1 or 2 over Christmas). I have a set routine for Christmas . In fact the way we decorate the tree and the meal I cook is the same since I was about 10. The hardest thing for me is present giving – I am bad at keep a surprise or waiting till Christmas to open things. For me the greatest thing about Christmas is the ability to stay at home without having to do much – as I tend to use it as complete downtime.

Surprise presents was something Nigel struggles with too:

I’m not a big fan of Christmas. I find it stressful, it’s hard to do the weekly grocery shop when everything has moved around. The whole pressure to socialise, shops being busy, roads full of traffic and the same old songs every year! I’m glad when it’s all over. I much prefer people to give me vouchers or money so I can buy what Iwant when Iwant it and not have to pretend what they have chosen is anything I even like!

I went on to ask Lee if he had any coping strategies that worked well for him:

Ear plugs/defenders, regular breaks to a quite area that others know are out of bounds (safe area/place) try and know structure of the day in advance like a timetable and also knowing who’s coming.

Which leads me nicely to the hope that Matt had for me:

As an adult I find christmas not to much of a problem to be honest, it makes a good excuse to drink and throw money up the wall lol. When I was younger it was a totally different storey though…

I hated the change of routine, things happening on different days, people turning up, tv programmes being cancelled,being so excited about the presents I was getting and staying up all night being sick and then being sick again when I didn’t get what I wanted and working out there was no such thing as Father Christmas and then feeling compelled to tell every other child I saw!

As I expected some autistic adults actually look forward to Christmas and I really hope that one day what Riko from http://www.dragonriko.wordpress.com thinks will be true for my children too.

I love Christmas and having loads of decorations, loads of presents, going shopping, going to parties and having people around.

As I debate whether to put a Christmas tree up or whether this change will once again be too much for my children I am filled with hope that while they will always have autism they may actually one day love putting their own tree up for themselves.

Thank you to all the autistic adults who not only helped me write this but give me hope daily. I hope by sharing your personal perspectives it helps more people understand and accept you all and makes the world a little more tolerant both for you all and for my children too.