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.

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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.