How do we support children with autism and complex needs in the early years?

Young child climbing through a play tunnel

Are you an Early Years teacher or teaching assistant?

Do you have children in your class that you are struggling to engage or understand their needs?  Do you think they might be autistic or have other SEND needs that you are not qualified to diagnose?

Are you struggling with the slow pace of getting help and assessments for some children?  Are there not enough hours in the day to work out how to adapt your teaching for such a variety of needs?

We have been privileged to work alongside many EYS teachers over the years and here myself and Alison Pettitt, our EYS autism specialist discuss some of the ways that every non-specialist teacher can build in teaching and learning activities for children who may be autistic.

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Being an autistic teen navigating sexuality by Dean Beadle

white male with wavy shoulder length hair and pale blue jacket

Dean Beadle is an autistic conference speaker, writer and singer. He has delivered over 900 talks in seven countries and has sung at balls, festivals and conferences in the UK, Ireland and Denmark. He is gay and can often be found adorned in tassels and sequins.

OK, I know you must be thinking “what on earth can some bloke in his thirties tell me about being a teenager?” How can someone old enough to remember Woolworths, Wizardora and Wendy Richard tell you anything about being a teenager in 2022? And you’d be right. It has been a hot minute since I was a teenager, and I’d be the first to admit that I know precious little about growing up in today’s world. BUT what I do know about is the process of making sense of your neurodivergence and your sexuality all at the same time. So, whilst we are from different generations, give me a chance, even if there’s just one of the following five points that’s useful in here, then it’s worth giving this blog a go.

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13 ways to encourage a child (or adult) with ADHD.

 

I want to explain why despite the effort, it seems like a person with ADHD might struggle to get things finished and how we can support them.

13 Ways to encourage poster – click here

People still think ADHD isn’t a real thing or a ‘naughty boy’ invention.  Or an excuse for bad behaviour.  Or something that children grow out of.  Or something that will be solved by good discipline.  And to be honest, most children I have come across with ADHD diagnosis are boys.  And they are noticed by their behaviour, often labelled as ‘a nightmare’ from a young age, and often seen as the one child no one wants in their class.

But would you want to teach a girl who works hard to be the teacher’s pet?  Who is top of the class, (well when she tries), and always is polite, keeps the rules and seems a bit shy and daydreamy at times?  Would you even consider or believe she had ADHD?

Are these presentations the same thing? – well yes, both are what ADHD might look like on the outside.  You can have kids with ADHD who are boisterous, chaotic and oppositional, and you can have those that act like the teacher’s pet, even if they are a bit ditzy…okay, a lot ditzy at times.  Inside the brain there are similar things happening.  There’s too much attention – the world is detailed, busy and distracting.  There’s not enough concentration to get through anything that is remotely boring, because the brain doesn’t have enough dopamine to get through it.  ADHD is an hyperactive brain, and in some the hyperactivity plays out in the body, into constant physical movement. In others it can be in hidden movements and tiny fidgets that no-one would notice.  That hyperactivity might be hiding away in their busy brain, creating fantasy lands in that amazing imagination, where you can run, have adventures and be the one to solve all the problems because you think so differently to anyone else.

Because the reality for kids with ADHD is that often the demands in front of them are harder for them than anyone else.

sulky Teenage girl sitting on a chair with mother stood by her with hand on her hip

I have noticed different approaches to the challenge of having to sit still, focus and complete often very boring tasks in ADHD children.   It is so easy to lose interest and focus, especially with all the distractions of other people, the environment and sensory things that catch your attention.

First there are those who just have to move.  And they have been told off so many times that they have lost the will to even try any more. The statement in an ADDItude article that said “by the time they are 12, many ADHD children have heard 20,000 more negative comments about themselves than other children” says it all.  All that negativity can easily become a self-fulfilling prophecy that the child believes about themselves.  I am bad, mad, broken and useless.  So why bother – I might as well be what they are saying I am.

Secondly there are those that daydream it away.  Often the girls, but there will be boys that do this too.  The world is too boring and demanding that you sit still, shut up and focus.  It is much easier and exciting to live in your imagination.  Some children are called liars when these stories spill out into their conversations. When they tell you their tales that are as real to them as your boring daily life.

Thirdly there are the tryers and the maskers.  The ones who don’t understand why things are harder for them than everyone else but hide this at all costs.  They learn to look like they are listening, to look like they know what to do and then work ten times as hard as everyone else to keep up with the work.

adult woman holding hands over face with head down, showing shame. Fingers from all sides pointing at her

Many children with ADHD have rejection sensitivity.  As an adult I can tell you it is a disabling fear of any kind of criticism or even correction.  I have learned how much of a people pleaser it has made me, and although I do think that isn’t all bad, (I think I have a great empathy and love for people because of it)  it does leave you vulnerable to overload, exploitation and mental exhaustion.

I used to think that on my gravestone would be the words

Well, she tried, bless her.

   I tried to pay attention in school and tried to make sure I sat at the front of my classes to help me be less distracted. (Although I could have written hundreds of novels with the stories I ended up daydreaming about).   I tried to do all my homework (when I asked my mum about my childhood, she said I always seemed to be doing school work – she thought I was just very studious, she didn’t realised it took me forever to try and do my work).  I tried to have friends (and always felt awkward and on the outside of the group) and I tried to concentrate in my exams (and only fulfilled my potential in those we had done course work in).

Whether you are supporting an ADHD child who is moving all the time, distracting others and being distracted (driving you to distraction!) or whether you are aware of a quiet, studious child who seems in a daydream and never seems to fulfil their potential (lots of unfinished work, for example) … My plea to you is to know that ADHD children have to TRY more than most other children and all they often get is criticism, sanctions (such as stay in to finish something, when they desperately need that break time) and a lot of negative comments,

Why can’t you just get it finished”, 

“you always ….”

“you’ll never amount to anything if you can’t ….”

So let’s flip this on its head.  How about changing the narrative here.  How about we start looking for things to PRAISE the ADHD child for, especially for any effort they make.  When your brain doesn’t focus the same as other children, then it can be devastating to always only have negative feedback for all the effort you do put in.  And what would make you less inclined to put some effort in than more demands and criticism?

“You’re not quite there…”,

“Just 10 more [boring] questions to go…”

How about we say something positive instead?

Here’s 13 things you can say to encourage rather than nag or criticise for what they can’t help…

  1. You’ve done seven questions… go you! I bet you could do one or two more with your amazing brain!”
  2. “I love how you’ve designed that differently.  What would we need to make it happen?”
  3. “Well done for working so hard on that.  We could speak it into the computer to type it up rather than write it out again.”
  4. “I love the way you listened to that story.”
  5. “You saved all your questions to the end, brilliant.”
  6. “Thank you for giving Fred the time to give his answer.”
  7. “I know that was a bit boring but you persevered, fantastic.”
  8. “You’re imagination is brilliant, let’s get it down on paper before you forget it.  What’s the beginning / first, next, then, last?”.
  9. “That’s a lot to remember, let’s write it on post it notes and your brilliant brain can celebrate each one you manage to get through.”
  10. “We’ll do the first ones together and then you get to be the champion that finishes it off.”
  11. “What a lovely kind thing you just did.”
  12. “You have a lovely sense of humour, let’s collect some jokes in this note book and we can read them together at break time.”
  13. “Your brain works best if we give your body some chances to move, so why don’t we plan some small movement tasks to do between [this work task] and [that work task]…”

One of the things we do know about ADHD now, is that dopamine is lacking in the brain.  This is essential for motivation and feedback in many activities and unless we are aware of this it can be very easy to misunderstand why an ADHD child isn’t doing something you are asking them to do.  As an adult I have been learning about my boredom threshold and how it does all it can to stop me from completing anything.  I’ve taught myself to stimulate the dopamine to help me actually finishing something – by giving myself little rewards when I get something done.   (Sometimes I do a little ‘happy I finished dance’ – I need movement you see!)  Breaking things into smaller chunks and getting positive feedback from my colleagues helps a lot too.   Lots of adults get bored with work tasks, you might say, but with ADHD it is extreme.  I can have this challenge a hundred times a day and I try so hard all the time to overcome it.  I have been lucky (Maybe? At least I wasn’t always in trouble?)  in that I was that teachers pet kind of child.  I was so scared of getting into trouble (rejection sensitivity) that I tried so hard to be good.  I tried so hard to do my work.  I tried so hard to revise and concentrate in my exams.  And I was devastated when I didn’t do so well as I should have done.   You see, I worked harder, and longer and tried harder than most other people I know.  And I wish I had known the reason why back then.

It is strange for me to start writing about ADHD but as I do with autistic children, I aim to help those supporting them understand how it is for them and work from what is positive, affirming and enabling.  It’s just with ADHD, I have some personal experience to draw from too!  Even if my husband still calls me “Lynn half a job!”  (For the record he’s good at finishing what I start around the house – that’s team work!)

Download the poster at the top of this post

picture of the poster to download

Helping Autistic Children with a New Baby

 

Another blog by Sarah Loveridge, one of our specialist teachers.

Change can be scary, especially a big change like a new baby joining the family and ESPECIALLY if you’re autistic. Thankfully, we often have around 9 months to get ready for this change, and autistic children will need as much of this time as possible to prepare for this big transition particularly if they’re currently an only child.

Why is transition hard for autistic children?

Transition is particularly challenging for some autistic children because unpredictability is the enemy. They may do all they can to control situations, because the more they can control, the safer they feel. Transitions can be so distressing for the autistic child and we might only see it in changes to their behaviour because that is the only way they communicate this.

As a result, transition requires a lot more energy (see blog post on spoon theory) as they try and process all the new information coming at them. Here are some reasons why transitions can be difficult:

  • Not being told what the change will involve
  • Now knowing what will be expected of them
  • Not knowing how long it’s going to last
  • Perceived or real sensory challenges
  • Not being given enough time or information to process the changes
  • Being so engrossed or comfortable in what they are doing that they cannot seem to switch attention and move/do something else.

How can I help a smooth transition?

a line of yellow balls each with a different facial expression drawn on them

  1.  Validate their feelings.

However excited we are to introduce a new child into our family, we will all have moments of panic, fear, doubt, worry and confusion too. Sometimes as adults we feel like we should hide these emotions from our children and pretend everything’s fine in order to keep stability and help them feel safe. More often than not, this makes children more anxious as they pick up on our emotions and see us trying to hide them. If, instead, we talk about our emotions and how we’re dealing with them, this allows our children to validate their own turbulent emotions whilst also modelling effective regulation strategies.

Example: “I’m having a moment of panic about baby clothes – we don’t have enough and I have no idea what to buy…but I can’t let Billy see that so I’ll put a smile on my face and worry about it later when he’s gone to bed.”

Alternative example: “Billy, let me explain why I seem a bit flustered and short tempered today; I’m having a moment of panic about baby clothes – we don’t have enough and I have no idea what to buy…I’m going to have to change our routine slightly and use an hour to sit down and make a plan about baby clothes as that will help me feel calmer. Would you like to help me?”

In that alternative example we’ve taught Billy that adults feel uncomfortable emotions too; we’ve validated his uncomfortable emotions by showing that it’s okay to feel and talk about them; and we’ve given him an insight into one of the many strategies we employ as adults all the time just to get through the day.

A set of baby shoes on a blanket

  1. Help them be a part of the process.

The change is coming and there’s nothing they can do about that. But by letting them be part of the planning process, they are able to control little bits about the transition which helps reduce some of the anxiety. Have a think, what could they help you with?

  • Choosing baby clothes
  • Choosing colours/decorations for the baby’s room
  • Choosing a name
  • Buying supplies (eg nappies, baby food)
  • Packing your hospital bag
  • Making a plan for when you’re away
  • Choosing toys

Note: a lot of baby toys are very pleasing sensory-wise – they might be very soft or have a satisfying crinkle. By choosing baby toys with your child, you’re immediately getting rid of any options that might lead to sensory overwhelm/overload eg toys with annoying high-pitched tunes or toys that have an unwanted smell. This also gives you chance to talk through sharing – could you make a box for baby and a box for your other child which has the same toys in so they can both enjoy playing with them at the same time? This encourages your child to play with the new baby without also having to deal with the difficult social skills of sharing, waiting or taking turns.

By letting them be a part of the process we’re helping them work through some of their emotions, giving them a small sense of control and preparing as a family for this big transition.

toddler and bay sleeping together

  1. Identify potential sensory difficulties

We can all think of some of the hardships of a new baby being around – interrupted sleep, noisy screaming/crying, smelly nappies – but for autistic children these sensory challenges can be incredibly overwhelming, especially if they’re not prepared for them. Don’t panic immediately – some children are able to develop tolerance to certain smells and noises but this takes time. Can you turn it into “the baby game” where you practise listening to a crying baby or smelling something similar to a nappy for a few minutes each day to get ready for it? Can you visit a friend or family member who has a baby for a short period of time to start to build some tolerance?

If this is really going to be a problem, it’s also worth thinking carefully about how you can give your autistic child some respite from the sensory challenges of having a new baby in the house. It might be worth creating a quiet baby-free place in your house where they can have their own safe place to go if it gets too much for them.

We worked with an older child whose parents were expecting a new baby. He was very distressed because he was so noise sensitive that the prospect of a baby’s crying hurting his ears was terrifying for him. Writing him a little story about how a family grows, with reassurances that he could go to a quiet place that was just for him when the baby cried, was so helpful. In the end he loved helping care for his little sister, and many years later, the two are good still very friends.

Ensure you’re taking time to chat with your child about what you will find difficult and talk through what strategies you’re putting in place to cope. It might be helpful to put a set time in the diary each week to talk about “baby worries” and “baby affirmations” or maybe you want to use a 10min timer each day to chat through a question they may have in order to regularly talk through challenges and solutions together.

Sensory ideas:

  • Ear defenders
  • Nice smelling things
  • Hand sanitiser/wipes (for using after touching a sticky baby!)

A baby book

4. Use resources

This is particularly helpful if your child is very young and you’ve read through the blog so far thinking “I’m not able to have all of those in-depth discussions with my child – help!” Even very young or pre-verbal children will be able to indicate which toys they like or which smells are difficult so please do try and implement some of the things above, alongside using some of these child-friendly resources to develop understanding.

Discussion around timescales can be helpful, especially relating to one of the reasons mentioned at the beginning about not knowing how long it will last. There are some helpful guides out there which track changes and can give some idea of what milestones babies might hit. Caution: obviously we know that not all babies develop at the same rate and this needs to be clearly explained to your autistic child. We can use these guides as an idea or best guess about when each phase might start/end but it’s best to view this as a science experiment rather than hard fact. See it as a “can we test this book to see if it’s right?” rather than “this book will be right and the baby might be wrong”.

It can also be very therapeutic to go through baby photos with your child of when they were born. Maybe stick some of them on paper to make a life timeline.  You could do this with photos of you as their parents if you have enough photos.  This can help them to understand that a new baby joining the family is a natural process and is a very good thing! It may also be helpful to help them understand the growing process (that the baby will grow into a toddler, child etc). Use photos and magazine pictures to show how we grow and change and explain that this will happen to baby too.

Be honest with them and feel able to say things like: “yes this change can be uncomfortable, yes our routines will be disrupted, yes it will be difficult for all of us at times BUT we love having you! You’ve brought us so much joy and we’re so glad you’re in our family – so let’s try and welcome new baby/child in the same way”.

Social stories can be really helpful when explaining how your autistic child could react in certain situations but BEWARE! Some examples that you find online are too presumptuous  (eg “I will love my baby sister!”) and some can even lead to vulnerability as they teach your child to “do this to please ___”. For more information on how to write effective social stories, why not check out one of our Social Story training courses: https://reachoutasc.com/training/

Finally, a note on adoption

It’s worth mentioning that for some families, you’ll have a slightly different experience of this transition as you go through the adoption process. Again, preparation time and child involvement is key. The tricky thing with adoption is that sometimes it falls through. Whilst it is a natural instinct to want to protect your autistic child from this heartache (which can sometimes happen again and again) it is also worth remembering that a lot of autistic children over-empathise so they’ll be feeling your emotions anyway. If this is the case then talking about it will be helpful in developing their understanding of why you’re feeling that way and will stop them worrying about whether it’s something they’ve done to cause your distress.  

One of the (many!) good things about adoption is that you often get some information about the child before you bring them home so you can show your child pictures, get them used to the name and maybe even meet them a couple of times before they join your family. This can be a really positive way of preparing them for the transition to sibling-hood!  . This is a great website –  https://homeforgood.org.uk/preparing-birth-children

 To sum up…

As with all things for autistic children, it’s never one-size-fits-all. What works for some children in this transition won’t work for others. If you can identify worries or triggers early on, then that gives you a really good starting point for finding some solutions and hopefully some of these ideas will help. The key is always to prepare as early as possible and try and get the child involved as much as possible. And congratulations on your new addition!

Can Social Stories really help autistic young people?

Teaching assistant sharing a story with a boy pupil in a green jumper.

By Lynn McCann author of Stories that Explain

*Social Stories are a Trademark of Carol Gray https://carolgraysocialstories.com

 

As an autism specialist teacher, I have been writing social stories for over 15 years. But I’m the first to admit that social stories can be ineffective, damaging and even dangerous.

The trouble is that many people have heard about Social Stories and mistakenly think they are a tool to sort out misbehaviour, or to get a child to comply with something. These sort of Social Stories are ineffective because they are badly written with no reference to the actual structure and rules created by Carol Gray in the early 1990s for very good reasons.  At best you might have wasted your time and the child and the staff end up feeling that Social Stories are not worth using a tool. Sadly, badly written social stories can also seriously damage a child’s self-esteem or put them in danger.  The relationship with the adults around them can be damaged through them insisting that the child complies with something that is actually very difficult for them to do. The adults’ wrong assumptions can affect the child’s mental health and make them very vulnerable to exploitation. This is a serious matter.

I would always be fair to parents and teaching staff as they are often told by educational psychologists, advisors, autism trainers that they should use Social Stories without being given any training in how to write or even choose a good one from the millions of templates there are out on the internet. Wanting to help, people might search the internet and copy something that they’ve seen online and hope that it will help the child.  Often, what they end up with is a script that breaks all the rules of how to write a good Social Story.

 

These are some of the things that make a script not a Social Story

  • Only talking about negative things;
  • Using language such as must, always, you need to, you will, you must, you have to
  • Assuming how someone will feel;
  • A list of rules or punishments;
  • What you must do to please somewhere else;
  • Explaining how your actions hurt other people and blaming the person for getting it wrong;
  • Insisting that the person understands your point of view;
  • Insisting an autistic person behave in a typical way or trying to make them stop being themselves.

 

A Social Story works really well if first we understand the experience or the issue from the autistic person’s  perspective. Then we write the story in a way that acknowledges this. We use carefully chosen words to explain what we would like to help the person understand in a way that makes sense to them.  Carol Gray’s rules on sentence types allow us to do this. Following her guidance means that we can write good Social Stories consistently and be more certain that there are helpful resource, and not a waste of time.

I have written Social Stories to help autistic children and young people understand many different social situations that they found tricky or confusing. I’ve written stories that help autistic children manage many different anxieties and prepare for new experiences. The topics I have written them about, range from “what happens to poo when it goes down the toilet”, to “why we can use other people’s ideas in our writing and how that helps us know what to write”. I have written about death, loss and fears as well as celebrations, affirmations and how awesomely autistic someone is. You can write Social Stories for very young children, for those who do not use verbal language or cannot read, right through to those who can discuss and consume very complex explanations when they are written in a way that makes sense to them.  I personally write most of my Social Stories with teenagers who are trying to understand the complex world around them.  We have covered politics, gender, revision, relationships, sometimes with a huge dose of humour as we seek to reassure and celebrate the young person’s life and help them navigate through school and beyond.  Their views and aspirations are celebrated and often by this age, we write the account together so it is for them and with them.

In my book, Stories that Explain

https://www.ldalearning.com/product/communication-and-interaction/autistic-spectrum-condition/teaching-resources/stories-that-explain/admt14158

I shared over 60 social story templates for primary age children, that could be edited to support common situations that we have found our autistic young people have had to deal with over the years.  Each one takes account of the sensory and communication differences as well as explaining the situation to help them understand it better. We write coaching sentences which helps a child make choices about what they can do in each of those situations.

I’m really passionate about teaching other people how to write good Social Stories… and we regularly put courses on to teach people to do just that.  Keep an eye on our UPCOMING TRAINING PAGE for dates, or invite me to do training for your school, group or organisation.   The course is open to everyone, at a reasonable cost and in the three hours I’ll take you through the rules, show you examples and then you’ll have a go at writing a story with my tutelage.  I intend to give you all the skills you need to be able to go away and write your own social stories for the children, young people and even adults that you support.

This course is suitable for parents, school staff, and volunteers and carers. We can do it online or in person, so that people from anywhere can join us, and you will also receive a pack of story examples, the handout from the training and some helpful tip sheets so that you can continue to write the best Social Stories.

(Social Stories can be written for children, young people and adults so whichever service or age of person you work with, this course is for you).

How can I help autistic pupils develop more independence in learning tasks?

an adult working with children in a classroom

By Sarah

One of the most common issues we come across when going into schools is children struggling to work without constant prompting.  This can be for a variety of reasons including (but not exclusively) fear of failure, difficulty getting started (the dreaded blank page problem!), distractions in the environment around them, trouble understanding the work or lack of motivation/sense of purpose. Another key factor is that a lot of the children we work with have had a 121 TA with them for years. Often, they haven’t had to ever sit and work by themselves and as a result, they can become dependent on the constant prompts that they are used to.

Don’t get me wrong, I know that some children really do need specific support.  There are many TAs (and teachers) out there are doing their best to help autistic children succeed. You’re all great and you hold schools together – we know this. But what is increasingly common – with expectations for both children and teaching staff becoming increasingly pressurised – is that we as the adults also have a fear of failure when trying to support children’s learning. If they don’t do enough work, our work ethic is scrutinised. If they don’t answer all the questions, our ability is questioned. If they lack motivation, our motivations must be lacking.

So, when you read these suggested strategies please know that they are written from a place of understanding and empathy. They are options, advised tactics, and potential ideas in your toolbox which may work some days but not on other days. They may work wonderfully for Child A but get Child B absolutely nowhere. We know that autism is never one-size-fits-all but hopefully some of these strategies will at least start a conversation about how we can begin to develop some of this much-needed independence in our children (whether autistic or not!)

It is also worth reading the research from the Education Endowment Foundation on the best use of TAs which we discuss in our TA mentoring course.  We think about how we might enable children to think for themselves when faced with a problem and how we might sit back and give them that thinking time, whatever the pressures around us to get on with it are.

diagram of 5 different ways to intervene to help more independence when TA s work with children

From p15

It’s also worth noting that you may be a parent reading this who is home-schooling through choice or necessity. As we go through, I’ll try to suggest ways that this can be adapted for a home environment too, as many of these strategies will be helpful as children try and complete homework or house chores too.

 How can we support autistic children to work independently?

  1. Environment

One of the main struggles for children trying to work in a classroom (or hectic home environment) is the constant distractions around them. They have all the best intentions to sit and focus on their work but somebody is talking nearby, a bird just flew past the window, their seat is uncomfortable and someone just started using the hand dryer after flushing the toilet. Start by checking what your child needs.

  • Ear defenders or putting music on (either out loud or with headphones on) may drown out some other auditory distractions and help them focus.
  • A stability cushion or weighted blanket over their legs may help children feel grounded and calm, enhancing their ability to focus.
  • Sitting alone or further apart from others may be useful, especially if they have a chatty or fidgety table partner/sibling!

Workstations

In order to cut out some of these distractions (especially the visual ones) you could put up a cardboard box around the edge of their table to create a workstation. This creates a wall without making them sit facing a wall and the great thing is that it’s portable. Need it for Maths? Pop it up. Don’t need it during group work in English? Take it down. If you want it to be a more permanent fixture then of course you can leave it up on their own table but it’s nice to have the option. This is useful for parents who want to make it clear to their children when it’s homework time and when it’s playtime. If the workstation is up, it’s time to work. Take it down and the message is clear – work time is finished.

Within the workstation, you may want to personalise it with the child’s name or a couple of pictures but don’t let the workstation get too cluttered. Only get out the resources they need for that lesson – you don’t need every workbook and word mat on display all the time. Cut out the clutter and keep it simple, otherwise it may become a distraction in and of itself!

A cardboard screen with trays to put work to do and finished work in

With all our strategies we recommend that you do them with the child. Please don’t suddenly set it up one Monday morning as a “surprise” – this often doesn’t go down as well as we’d hope! Autistic children often find change difficult, struggle to cope with the unpredictable and many of them have deep seated anxiety and self esteem issues. If you suddenly give them their own table with a workstation all set up without any prior warning they may just end up confused, worried and might even feel like it’s a punishment because they haven’t been working hard enough. Take the time to talk about it with them first, explain that we’re going to give it a go to see if it helps them focus and show them pictures of adult workstations so they recognise that it’s a lifelong strategy that they can use (not anything baby-ish or patronising) like this:

various examples of wall mounted storage and organisation ideas.

photos from Pinterest

 

Let’s leave workstations for now but I’ll come back to them later…

For more info on sensory support check out this blog: https://reachoutasc.com/what-is-a-sensory-diet-and-how-do-i-implement-one-in-my-busy-classroom/

2. Chunking

I don’t know about you but I have a list for just about everything: chores, holiday packing, meal ideas – you name it, I have a list for it. Why do we do it? Often, it’s because our brain appreciates us breaking things down into smaller chunks. It helps us to process what needs doing, things seem more manageable and we get a sense of achievement every time we cross something off. Our aim with the next strategy is to do the same thing with school work. Especially as children get older, they are given whole worksheets full of information or questions and it can be difficult for autistic children to know which bit to focus on first or how to process it all effectively. By breaking it down, we’re making this tricky task a little bit more manageable. It also helps to keep it visual – how many times do you have to give an instruction to tidy their room? Writing it down gives autistic children something to refer back to, thus building independence (and saving your sanity) as you point them back to the visual instead of repeating the instruction.

Work schedules

These are so easy to adapt and personalise for your child, depending on what their interests are, how old they are and how easy/difficult they currently find independent working. The aim is simple – complete short, manageable tasks to work towards a quick, motivational reward. The aim is to keep it visual and work with whatever attention span the child has in order to tick things off. Rather than trying to push them through a big long list of tasks, the work schedule breaks it down into short bursts of productivity with regular breaks in between, supporting them with that visual reminder. 

chart outlining 4 steps to a task with car pictures

 I used this example with a Reception child who couldn’t process more than one instruction at a time. We started with “one instruction = reward” and over time we built it up to following “two instructions = reward” and so on. Does it require patience? Yes. Is it slightly more time consuming to write down/draw the instruction? Yes. But does the child build independence? Yes.

work schedule chart with football pictures. Titles, first, nest, last and sensory activityThis second example is for a child in year 2 who initially loved monster trucks and football! After two weeks of using this, he decided that actually he loved Minecraft more than anything else in the world. No problem – we simply stuck pictures of Minecraft over the other photos and the work schedule was back in business. For this child, he was able to manage 2 or 3 tasks before getting a quick reward. He still needed lots of modelling and scaffolding to begin with but over time, as he became moreImage comfortable and familiar with it, his independence grew.

Note: the reward doesn’t have to be time-consuming or lots of extra work for you. I worked with a year 1 child who loved those little pop up toys so for her, this was a super motivational reward. (We wrote all our numbers to 15 and read a whole reading book in 20mins just by using a 1-step work schedule with the pop up toy as a reward each time).

This third example was used with a child in year 6 who loved the NYPD. When I went back for my first visit after giving them the work schedule his unfiltered autistic honesty shone through as he told me straight up “oh, we never use that!” Goooood. It turns out he was being asked to get through all of morning challenge, all of English, and all of Maths before he got a reward. This is just too much! We want to use this resource to break everything down into little chunks so that the reward is always within reach. Waiting almost 3 hours for a reward may be attainable for children who are already pretty independent or have used a work schedule for a while but as a first step it was too big a jump. For this child, it was also helpful to give him some rules for the reward so that it wasn’t distracting and difficult for others around him. He chose to play a game on the iPad as his reward so we agreed the rules with him and stuck them on his table. Again, visual support and an active discussion helped this strategy to succeed. We don’t want children to feel confused or out of control; these strategies are supposed to help them!

  1. Organisation

One thing that can hinder independence is not having the right thing at the right time. Your child may be very capable of writing 3 sentences in one go…if only they could find their pencil. Or maybe your child could sit and focus for the whole lesson on their maths problems…if only they knew where their worksheet was. One of the benefits of using these strategies is that we’re not only getting work done (hopefully!), we’re also teaching them life skills. If they are able to organise themselves and independently find the relevant equipment/worksheet then they’re well on the way to being successful in life, as well as their potential academically.

Workstation + work schedule

For the ultimate combo, use the two strategies together. You could laminate the work schedule and stick it up on one of the workstation walls. Alternatively, cut the work schedule into strips and put each strip in an envelope for children to open. You could use a magazine folder or tray to put the “to-do” work in so it’s clear what still needs to be done. Make sure you have a finished tray or folder. This helps children to stay organised, gives a focus/purpose to the task and also helps them feel a sense of accomplishment as that tray fills up throughout the lesson or day.

child reading a book with a timer showing 10 minutes.

For some children, it may be helpful to use these strategies alongside a timer. Instead of saying “task one: complete maths question one” it might be more helpful to say “task one: work on maths for 2mins”. This gives children something to aim for, especially if you know that they’re going to really struggle to complete maths question one without any support from you. After their 2mins of trying independently, then you can go and help them – but we’re still building resilience through encouraging them to have a go on their own first. Timers can also be helpful to ensure that rewards don’t go on forever! Again, explain to the child that the aim here is to get work down so we can proud of ourselves/learn more etc etc. Be honest with them – “I know you could just turn the timer over again and tell me you didn’t but I’m going to leave it with you and trust that you’ll make the right decision”. It can be a little scary to put the power in their hands but let’s give them the chance to surprise us and make a BIG deal if/when they make the right choice. Note: Give them more than one chance to make the right decision here. Don’t be afraid to call them out if you spot them giving themselves extra reward time, but talk to them about how these strategies are to help teach them life skills and let them know that you’ll give them another chance. How often do we get second chances in life when we mess up? Let’s talk to our kids about that too so they know that we’re on their side, cheering them on and willing them to succeed!

4. Quick ideas

Just before I finish, here are 8 ideas for quick, motivational rewards. It doesn’t need to be rocket science – just find something that your child really gets on board with. Ask them, give them options, and encourage them to take ownership of it. Note: If your child doesn’t use speech you can still ask them what they would like.   Use visuals to support communication and still seek to include them in these decisions.

  1. Pop up toy (as mentioned before – a winner with several of the children I work with)
  2. Sensory items (helpful for those kids who have sensory needs anyway – this helps keep their body alert in between work periods. Note: Be careful that you don’t withhold these from children that need them to stay regulated during the day! They are more necessary for some children than others.)
  3. iPad (simple yet effective. Decide rules together about what games they can play, whether they need to use headphones, where they need to use it etc)
  4. Book (some kids will love retreating to the book corner for 5 mins – rewards can be educational too!)
  5. Music (this can be a really lovely way for kids to de-stress if they can listen to a soothing piece of music or their favourite song in between tasks)
  6. Drink of water (yes – it can be this simple! This may be good for those kids who want/need to stretch their legs or have a wriggle – let them walk to the water fountain in between tasks.)
  7. Lego (if children are only allowed to build for 1 or 2 mins in between tasks why not challenge them to see how much they can build by the end of the day? This can be a very satisfying and motivational way to get work done.)
  8. Drawing/colouring (lots of children find the mindfulness colouring sheets very therapeutic and relaxing which can be especially useful if they’re finding the work stressful and difficult)

It will probably take time for both you and your autistic child to get used to these strategies. Give it a couple of weeks minimum before giving up, and keep explaining to the child what you’re hoping to get out of it. If they’re not on board then it’s not to going to work – but it might take some time to process how it works.  Building independence is best done through cooperation with the child so they can enjoy their progress. Knowing when to ask for help and knowing that they can help others is part of that too. So keep going! You’ve got this.

You can find out many more ways of supporting autistic children in primary schools with our CPD accredited courses at Schudio TV.  This is a great one to start with https://www.schudio.tv/courses/supporting-autistic-learners-primary    (only £24 individually or get all our courses for only £12 a month as a Getting It Right member)

How did an Autism Specialist get diagnosed as ADHD?

a pink background with repeating pattern of the word ADHD and fish blowing bubbles.

This is what my brain feels like – lots of bubbles (thoughts, ideas and distractions) going up through my head!

Just to jump right in…The autism specialist is me, Lynn McCann, and I was diagnosed with ADHD in July.

As with most events like this there is a back story.  I have been an autism specialist for 16 years now and in that time have studied and researched autism, ADHD, PDA Profile and other conditions.  I have listened intently to the experiences of the autistic young people we work with and of autistic adults who work with us and who are my friends.

I started studying ADHD a few years ago when more and more of our pupils were receiving diagnosis of autism and ADHD together.  As usual, we wanted to know as much as possible so we could support our pupils and educate teachers to understand their pupils. At the same time, we as a team were also studying autism and girls and developing our understanding of the reasons why autistic girls were being misunderstood, misdiagnosed and in some cases, missed all together.  I started to come across articles and testimonies from ADHD girls and women, realising that they too had been missed or misdiagnosed.

It started years ago

In 2017 I went to the ADHD Foundation ADHD conference in Liverpool.  It was there that a few light bulb moments happened, and I realised that:

  1. The ADHD community were promoting the links between ADHD and autism and embracing dual diagnosis so that they could help and support those children who had both diagnosis.
  2. More and more adults were being diagnosed, contrary to the past belief that children grew out of ADHD, we were beginning to understand that they didn’t. It was just that adults seemed to learn to adapt and manage ADHD differently.  Or sometimes they were blamed for their difficulties, developed mental ill health or some dropped out of society or ended up in the criminal justice system…undiagnosed.
  3. More and more women were being diagnosed as adults.

I loved listening to Rory Bremner’s story of being diagnosed and how ADHD affected his life. As well as being funny, I loved how ADHD contributed to him to be so creative and intelligent.  Whilst there I took the opportunity to do a Qb test.  This is a computer programme that tests your reactions, focus and attention.  I scored in the top 4% of people likely to have ADHD.

A horse that looks like it is laughing

 

And at that ADHD conference I was told off by another professional for fidgeting during the afternoon talk! 

 

I was becoming more and more convinced that I had ADHD and spent some time investigating my own history, doing online questionnaires for both autism and ADHD and putting together my evidence.  I knew there had always been aspects of autism that I totally understood because it was my experience also.  I have strong hyper-sensitivities which impact on where I go and choices I make and can be very distressing if I can’t escape them.  I thrive on routine and have a lot of anxiety around unpredictability.  As a child I could be withdrawn and seem very shy.  The truth being (and can still be) that I often don’t know what to do or say around others.  These days I can come across as confident because I have worked hard to practice and learn what to do and I genuinely love people, so make all the effort I can to listen and to engage with them.  I have taught myself to do this for many, many years and hope that people who meet me now can see my genuine interest in them.  (And forgive my interrupting, distractions and over-excitement.)  I love doing training and presenting because I have a script and intense interest in my subject, and I love explaining things.  I can move around and if you have ever seen me do a presentation in real life you will see that I don’t stay still at all.

I understand autism so well because I have family members and close friends who I have helped self-identify or become officially diagnosed, as well as working with so many autistic children all these years.  However, I also love novelty and have the boredom threshold of a gnat. (my own phrase there!)  I am impulsive and can be distracted at the tiniest thing.  It was clues like that, that led me to looking more at ADHD.

There’s obviously a lot more to it… but let’s get back to the story…

Three years ago, I had written a four page essay on why I might have ADHD and took it to my doctors.  She agreed to refer me to the assessment team.  I knew it would be a couple of years so tried to settle down to wait.  After a year I hadn’t heard anything, so I rang my surgery.  They were very sorry, they said, they and forgotten to send the referral and did I still want to be referred? (GRRRRR!) So, they did, and a couple of weeks later I was called to an appointment with the mental health team to triage me.  Once I told them I wasn’t there for a mental health assessment but a referral for an ADHD assessment, they finally got the right forms out and after our interview, said they would put the referral forward.  I know ADHD isn’t a mental health condition, but it can affect (and in my past it has done) mental health.  At this time, I was fine and just wanted to get on with the ADHD assessment. (Did I say I was rubbish at waiting for things!)

So, two years and one month later I was contacted by the Lancashire ADHD Assessment Team in Haydock (which isn’t actually in Lancashire but Merseyside) to invite me for a video conference assessment.  I filled in more forms and had a good chat to my family about my history, things they noticed and examples from my childhood.  I have two good friends who recently had an adult ADHD assessment, and they were both so helpful and encouraging.  By this time, I was a nervous wreck. I was fairly convinced that I fit the diagnostic criteria but terrified I might have got it wrong, or the assessor wouldn’t agree with me.  I checked out the service and knew that they had up to date knowledge, were diagnosing adults and knew about adult women and ADHD.

After an hour and a half asking me questions about my whole life, going through each aspect of the diagnostic criteria, the assessor said “YES”.  He was confident that he could diagnose me with ADHD.  That is the point my brain went to mush and I couldn’t focus on anything else for the rest of the day.

What's next? written on a post it note.

What happens next?

According to the NICE guidelines, ADHD can be treated with medication and therapy alongside it.  I am not keen on medication at this point,  but am signing up for the therapy sessions they are offering and seeing what that might do to help.  I am 53 years old (yes, I know you can’t believe it!) and at this time in my life I have a million strategies on the go, and many of them do work.  I look like the most uber-organised person on the outside but on closer examination it is all quite tenuously held together.  However, I run my own business and have people around me who catch what I drop and who look after me.  I have the best team in the world.  We are mostly neurodiverse people and fully empathetic to working with differences in people within our team as well as in those we work with.

It is a huge thing to declare my ADHD diagnosis publicly.  But in my position I have the opportunity to do some good with it.  I can help dispel the misunderstandings about ADHD and encourage those who might be thinking they are ADHD to go for assessment.  I have been a teacher for 30 years and I can reflect on how ADHD has affected my teaching and how some reasonable adjustments could have made a huge difference.  I am an employer and business leader that can help other employers recognise their own neurodiversity as well as understand and help their employees.  I can share my experiences and struggles, my strategies and challenges to help others.  I have already written and deliver a course about how autism and ADHD can interact.  In the future I will be writing more about adult ADHD and also how to support ADHD girls in school.  I will continue with my autism work and developing our team’s expertise so we can be there for our pupils, their families and their teaching staff.  We are still autism specialist first.

And I can be a bit kinder to myself.  Sometimes I will struggle and there is a reason I can understand.  And that is okay.

Finally, I want to thank my family and all those amazing people in the autism and ADHD community who have helped and supported me in this journey.  You know who you are.  Thank you with all my heart.

Here’s some great websites and organisations I have found useful.  I’m sure to be adding to these over time.

https://adhdfoundation.org.uk – Great online information and conferences

https://howtoadhd.com – I love Jessica’s you tube channel too.

https://www.additudemag.com/self-test-adhd-symptoms-women-girls/ – this is what helped me start to collate my evidence.  Great magazine on so many issues.

https://www.additudemag.com/rejection-sensitive-dysphoria-and-adhd/ – this article was illuminating for me.

10 Tips for Employing Autistic People

a picture of Cristina sitting at a desk. A white woman with long blond hair and wearing glasses.

Context

I set up my company, Reachout ASC in January 2014.  At first I worked on my own, but soon added another specialist teacher, and most crucially, I paid someone to do my bookkeeping (not my biggest strength).   Now I have two part time employees, three self-employed associate specialist teachers and I’m holding on to that bookkeeper for dear life!  We call ourselves a team… because being in this together is what makes the services and products of Reachout ASC as good as they are.  It is a team effort.  Two of our team are autistic.  One of them is Cristina, who has given permission for me to share some of her story.  I employed her as an office assistant four years ago.  Cristina plays a vital role in preparing training materials, resource packs and general office duties.

I knew Cristina was autistic before I employed her.   That piece of information was very helpful as it enabled me to interview her in a way that was comfortable for her.  I knew from her CV that she had the skills I needed, but to get to know her properly, a formal interview would have not worked.  So we met at a café of her choosing and had a chat.  We talked about a lot of things, but I was able to ask particular questions that enabled me to make the decision to hire her.

The Law

The laws of employment are heavily weighted towards the employee and so it is not surprising that small business owners like me are wary of who they employ.  It’s a huge responsibility when facing the decision of who will fit into your very small team and do the work you need them to do, efficiently and cheerfully (if we are in a small team, getting on together is of vital importance).  It’s not unusual to be cautious and afraid of hiring someone who says they have a disability or condition you don’t understand.  Running a small business, the onus of everything falls on you, and if it goes wrong, you stand to lose everything.

But the Equality Act of 2010 also gives us guidance to draw and be empowered from.  Small businesses are ideal places for hiring people with disabilities because often you can make the reasonable adjustments that it is much harder to do in a huge corporation.  I did some work with a big government organisation in my area.  They wanted autism awareness training as they had autistic employees who were struggling.  However, despite a couple of years work, nothing really changed.  Their recruitment processes were not changed, their offices remained open plan and even pre-COVID they said they couldn’t be letting people work from home to get a break from the environmental sensory overload  of a hot-desking office system.  Every office in the country had been designed centrally and it could take years (or perversely a pandemic!!!) to change it.   I was disappointed and at least one of the autistic employees had to leave through lack of support.

What we do

But as a small business owner I can do whatever I can to make the environment work for my employees.  In our office, we did a sensory audit.  And the feedback from Cristina and our other team members with differing needs led to us painting the walls blue to reduce glare, to switching off the automatic hand dryers and providing paper towels in the toilets. I decided to give all staff flexible hours as long as work was done and they let me know what they were doing and when,  and setting up communication systems that were logical and accessible.  We made all our policies easy read https://www.changepeople.org/getmedia/923a6399-c13f-418c-bb29-051413f7e3a3/How-to-make-info-accessible-guide-2016-Final  which was appreciated by the whole team and made sure that any meetings had a clear agenda and each person had time to prepare what they wanted to contribute.

It’s a false economy to say you don’t have time to do these things because they actually benefit the whole team.  We use a Kamban system to plan and prioritise our tasks and so each person knows what to do, when to do it and communicates when it is done.  This was to help Cristina do her work, but was quickly adopted by others and it has led to much more efficiency in our team.

Cristina has also applied for and got Access to Work payments.  This little known benefit can help many employees with the adaptations they might need to access work.  Cristina uses it to get a taxi to work as public transport is far to much sensory overload for her.  I definitely noticed the difference in her ability to start her work each day, once that trigger was taken out of the equation.

Of course, you might say, it is easy for you!  As autism specialists it’s only right we know how to support autistic employees.  But I also have people on my team with ADHD, epilepsy, OCD and dyscalculia, who are menopausal and diabetic.  Any workforce is a mixture of people with different needs.  I have just found that understanding and adapting our working practices have led to loyalty, efficiency and high standards because we practice what we preach!

cartoon of 4 people around a table having a team meeting.

What can I do?

10 tips for small business leaders.

 

 

 

  1. Have a read of the Equality Act and see it as opportunity not a mountain to climb. Talk to your staff about it and invite them to talk to you about any barriers they might have in doing their job efficiently.  Remember the words are ‘reasonable adjustments’ and that means it has to work for you as a company as well as for the individual team member.  There may be some small costs involved, but often a better organised system such as rules around interrupting people when they are working and an option to work from home could be more effective.  https://www.c2e.co.uk/downloads/act_2010_advice_for_employers.pdf 
  2. Think about your recruitment processes and how accessible they are or are not? Are your descriptions clear or ambiguous?  Could you give interview questions out before the interview?  Does it have to be formal?  Can you think about how you can test skills over judging someone on their ability to give eye contact or not? https://nas.chorus-mk.thirdlight.com/link/lbubadmcykd2-axv9he/@/preview/1?o 
  3. Know that some of your staff may be afraid of disclosing their needs and that they don’t legally have to. All you can do is make your workplace open to difference and respectful of all differences.  People may have had terrible bullying and persecution before they came to work for you and so it needs to be handled sensitively.  If someone discloses to you, it is confidential and if you use it against them in any way they can take you to a tribunal. So be honest, fair and document your discussions and support if need be.  I ask my team to comment on their support each time we have a work review, usually twice a year and we document that.
  4. Remember this is a learning experience for everyone and the employee themselves may not know what reasonable adjustments will work for them. Just be open to learning together.
  5. Get your employment contracts right. I paid a HR company to draw these up for me asking them specifically to use clear and appropriate language that all my team could understand.  This can be used as a template for all employees.
  6. Make job descriptions specific and review them regularly. We have some specific tasks for Cristina to do each week, but there are some others that may come up occasionally.   The job description is a clear as possible with allowance for these additional tasks that develop with our work. The Kamban system can then be used as the main weekly task board.  https://kanbanize.com/kanban-resources/getting-started/what-is-kanban
  7. Make hierarchies clear. I recently employed a new PA who took over supervision of Cristina’s work.  We drew out the new staff structure so it was clear who was responsible for what and to whom, giving the new PA and Cristina some joint projects to help them establish a good working relationship.
  8. Make rules and reasons clear. Sometimes Cristina needs a specific thing pointing out because it hasn’t been made clear enough.  Rules such as not taking personal calls in work time might seem obvious, but we always outline the obvious to everyone so that we are not relying on assumptions but clear facts and reasons why.  This works well and no one feels they are singled out or blamed for anything.
  9. Problems should be discussed and solutions found together.  Blame and discipline need not be part of any small business owners day to day management.  If we have a problem we identify it and discuss what needs to change, how we might support that and then get on with it.   This openness allows my team to tell me when I have done or not done something and it has caused a problem for them!  It’s just become a normal way of working for us all and again leads to greater productivity and better services in the end.  Trust in each other is at the heart of this and I can see it working best in a small business.
  10. Try to build up your employees skills by identifying their training needs. These days that can be done through webinars and you tube videos, never has training been so accessible.  Keep a record and encourage all your staff to have a Professional development target and log all they are learning that benefits them in their job.  This includes diversity and disability awareness but make sure you choose training that looks at positive abilities and does not just trot out outdated stereotypes of disabled people.

If, in the end, you or your employee can’t make something work, or somehow your employee has been dishonest with you, employers who have done all they can to support and make those reasonable adjustments can let someone go with the knowledge they have done the best they can.

There is a lot more help out there.  Busy small business owners who don’t assess the different needs of their staff and don’t consider using the talents of the many differently abled people in the workforce are missing out on some very talented people.   Start by committing to because Disability Confident employer by signing up for this scheme –  https://www.gov.uk/government/collections/disability-confident-campaign#become-a-disability-confident-employer

…Then chat to your existing workforce, talk to one of the disability employment charities or the job centre about making a space in your company for someone who might have a disability who could do the work you offer.  There is help out there and you as a small business owner could make a huge difference to your workforce as well as helping someone fulfil their potential.

Other people with different condition may not need an employment coach or long term support, but just some of those reasonable adjustments that enable them to give you their best work.

Further Reading

https://www.employmentautism.org.uk/

https://www.disabilityaction.org/employing-people-with-disabilities-a-positive-action-guide-for-employers

https://www.ambitiousaboutautism.org.uk/what-we-do/employment/toolkits

Why does my autistic child suddenly meltdown “out of nowhere”?

outline of a person with words such as stress, anxiety and pressure written inside.

*”A meltdown (or shutdown) is when a child becomes very distressed and emotionally overwhelmed.  They can be caused by many different factors, such as situations that are unpredictable, sudden changes or things not happening as the child was expecting.  They can also be delayed as the child takes time to process a difficult situation and sometimes are caused by a build up of stressors so not one particular thing has triggered the distress. The child in meltdown does not intend to hurt or harm or indeed cannot often control what is happening to them.  They are often frightened, overloaded and the way we react to them can often make it worse, not that we ever intend that!”   Lynn McCann  

 Understanding some of the triggers and also how to support a child from meltdown to recovery can take some working out – but here, Sarah Loveridge, one of our specialist teachers, gives some advice on where to look first. 

Whether you’re a teacher, TA or parent of an autistic child, we’ve all been there. Everything seems to be going fine and then seemingly “out of nowhere” we’ve got a huge meltdown on our hands. Where did it come from? Was it something we said?

Believing that meltdowns come from nowhere is a dangerous notion. It leads to a sense of helplessness and frustration in us as adults as we scramble to try and figure out what’s caused this outburst of emotion. It also changes our perceptions towards autistic (and non-autistic!) children, painting them as unpredictable, out of control or just plain stroppy.  Behaviour is often a communication that something isn’t right or that some need isn’t being met (whether that’s a toddler “needing” a toy at the supermarket, or a teenager “needing” to feel accepted, loved and supported – both demonstrations of a certain behaviour tell us something).

It might help to picture your autistic child as a bottle of fizzy drink. Every time they get triggered, they’re shaken up a little bit. This keeps happening throughout the day until suddenly the lid comes off and their emotions (sometimes quite literally) go everywhere. This is what we call a meltdown (or shutdown, when they internalise their distress) and it can often appear to come “out of nowhere”. This is because the triggers have been building up gradually until it all becomes too much.

a cola bottle having been shook up and the lift bursts off

The good news is that whilst with autistic children it’s never one-size-fits-all, there are usually some patterns we can look out for to help us support our autistic children before they hit the meltdown stage.

If we can spot these triggers and patterns throughout the day, then we’re one step closer to supporting our children better through the chaos that is daily life. This list is by no means exhaustive, but here are some key areas to look out for:

Often it is the actions of others that can cause the build up of stress and pressure.  If the child isn’t being supported correctly at school, or if they are being picked on, left out or bullied by others.  Check these issues out too.  If a child can’t tell you, you will have to investigate and trust your instincts as parents or as professionals.  

Communication

1. Whether your autistic child is non-verbal, talks a lot and has mature vocabulary, or is somewhere in between, they all have their own ways of communicating. If we push them to communicate constantly in a way that is difficult for them (eg lots of verbal communication with little or no visual support) then this can be very draining and may lead to meltdowns later in the day.

TOP TIP: Use visuals as much as possible rather than just relying on verbal communication, and make it a two way street. Get them to show you how they’re feeling or what they want, rather than trying to explain it. Use visual timetables to plan out the day and prepare them for any changes. Show them pictures of new or unfamiliar places (like the dentist) rather than just telling them. Using visuals can reduce anxiety and therefore hopefully also reduce meltdowns. We also need to give processing time – so pause often and don’t be too quick to repeat or rephrase something.

2. Some autistic children are very keen to chat, and will talk to you for hours about their special interest or ask a hundred questions about why you’re doing something. Although this may sound completely effortless it can actually be very draining, especially if they’re talking to somebody new.

TOP TIP: If you spot a pattern of your child being very talkative in the morning and then having consistent meltdowns in the afternoon, this might mean they need some help spreading their communication energy out throughout the day. Make sure they have access to sensory activities to support their energy levels and if you say you will have a chat later – make that a specific time and keep to it. They might need help recognising that they need some alone time in the afternoon to recharge. It’s all about balance – if they’re able to do a 2 hour presentation to a room full of people, great! Don’t stop them from doing that, but be aware that they will probably need to ensure nothing else is planned in for the rest of the day.

Social Interaction

3. This is heavily linked to communication and can be vastly different from day to day, depending on who your child is interacting with and how that interaction goes. Again, if they are in a new or unfamiliar situation (eg talking to a grandparent they haven’t seen for 3 years) then this will put more pressure and strain on them than if they’re talking to you or someone else they see regularly (and like!)

TOP TIP: Put some structure in place around social interactions. Maybe they could play their favourite card game with the new person and explain the rules carefully at the start. Maybe they can take some pictures of their special interest so they have something familiar to talk about. Keep the interactions short if possible, and you might want to discuss this time limit with your child beforehand. Again, they may need some time to regulate/recharge after a new interaction, so plan this into your day too.

And let’s remember the other side too – it shouldn’t all be up to the autistic child to change their behaviour. Tell the relation or visitor what their role is in this, for example you could encourage them not to keep asking questions or demand hugs. Ask them to give your child space if they want it and time to process. If you manage the time and intensity of new social interactions carefully, this can minimise the risk of a meltdown later on.

4. Social interactions in large groups can be very difficult for autistic children, as they try to focus in on lots of different people talking at once (especially if they have sensory needs – we’ll come back to that). Again, these times are often unstructured (eg playtime at school or playing football with friends) and it can be draining for your child to try and work out all the social rules required for them to “fit in” with those around them. Should they shout “goal!” every time someone scores? Does everyone hi-five or just certain people? How much eye contact does this game require? Why is everyone wearing a coat even though it’s sunny?

TOP TIP: Encourage the other children to explain rules of games very clearly (eg in our running race, where do we start and end? When do we go? etc)  – it shouldn’t all be reliant on the autistic child changing to fit in so teach neurotypical (non-autistic) children how to adapt too. Give your autistic child an “out”, whether this is a space where they can go and sit if it starts to become overwhelming or a “job” they can do to get away for a bit. Again, be aware that after spending time in a group, your child may need some time alone or with one “safe” person to recharge. And also let’s remember, some autistic children might use playtime as a chance to regulate themselves after sitting in a noisy classroom during lessons so sitting alone might be just what they need.

Remember to give all children some specific praise when they interact well with those around them – things like “well done, you made space for each other” or “thanks for allowing everyone to choose a rule in your game” or “well done for giving each other a turn”. By stating specifically what they did well, we can give them some helpful clues about how to understand the social things around them whilst also explaining to others the social communication of your autistic child.

Sensory

5. Sensory needs that aren’t being met can be a constant source of frustration, confusion and sometimes even pain for an autistic child. For example, they may be hypo-sensitive which means their senses are under-stimulated and they fidget because their muscles are not giving the brain strong enough signals. To counteract this feeling, they rock on their chair or get up and walk around to wake their body up. On the other hand, they might be hyper-sensitive which means their senses are over-stimulated and light/sound/textures can become overwhelming. To deal with this, they may sing to themselves to block out other sounds, put their hands over their ears, run away or may hide under tables to get away from the light.

TOP TIP: It can be easy to create a “sensory safe space” at home or in your classroom by using a teepee, pop up tent or even just a blanket draped over a table. Ideally it will be quiet and fairly dimly lit, to minimise the potential for sensory over-stimulation. Create it together so it’s somewhere special and personalised for them. You could put a favourite book in there, or some music they like or a big beanbag to give their muscles some sensory feedback (especially if they’re hyposensitive) — personalise it together. This can then be used as a retreat throughout the day (before they become overwhelmed) to help them regulate, therefore reducing the risk of future meltdowns. It can also be a safe space to access during a meltdown to help them calm.

Remember – if they need movement then make it happen! Let them sit on a peanut or body ball, use a trampet, go for a walk or stretch with a yoga band. Let’s not teach children to suppress these needs but rather give them strategies and space to help them get sensory feedback in appropriate and safe ways.

6. If your autistic child’s senses are being over-stimulated they may live each day in a constant state of high alert. We might think they are anxious and worried all the time.  Ever wonder why your child’s eyes dart around the room whenever someone moves? Or how they know exactly where each fire exit is? Or why they “patrol” the perimeter of your picnic blanket? Things that may seem small to us, like preferring a certain pencil or not liking the consistency of some foods can have a huge impact on how well autistic children are able to function from day to day.

TOP TIP: Don’t assume that a child is just being “fussy” or “picky” if they refuse certain objects or food. If possible, open a conversation with them about why they don’t like it. What in particular is making them squirm or refuse? Make a little note of it and see if you can start to spot any patterns. This will help you to understand your child more and figure out ways how to work around potential triggers that may lead to a meltdown later in the day. Pick your battles – do they have to eat porridge for breakfast or could they have some dry cereal? Is it vital that they wear a coat or can they manage without?

Recommended further reading – The Out-of-Sync child by Carol Stock-Kranovitz.

 There is so much more we could say on this and we know that every child is different so be kind to yourself. It will take time and patience to figure out those specific trigger points but hopefully by starting to spot patterns throughout the day, the links between potential triggers and future meltdowns will become a little bit clearer.  Your child will communicate to you and you can be their advocate.  If they need adjustments, it’s the right thing to do.

Keep going, you’re doing a great job!

Written by Sarah Loveridge –  Reachout ASC Teacher, May 2021

Supporting autistic children through bereavement.

A young girl in a red dress sitting on the right of a long bench with a teddy at the opposite side of the bench.

Written by Kirsten Illingworth Specialist TA with Reachout ASC.

“Autistic children  may react to a bereavement in different ways to neurotypical children. Some of the underlying perceptual and processing difficulties observed in autistic children may affect their understanding of death and their reaction to a bereavement. Autistic children, like any others, need their grief both recognised and understood and will need opportunities to express how they feel” (Katie Koehler DClinPsych 2016).

It is difficult to explain death and bereavement to a child and more so to an autistic child. During the recent Covid-19 epidemic many families have lost a loved one. For families with an autistic child, this is made harder as they struggle to express how they feel or understand their emotions. As well as suffering the loss of the person that has died, autistic children can be further distressed by all the changes that might happen in their day-to-day lives as a result of the bereavement.
In this blog, I will try to give you tips to help you support your autistic child to understand what is happening.

Prepare

Involve your child and try to prepare them. If someone is dying due to illness explain what is happening, keep them informed of any changes. If it is a sudden death this is not possible, but they will pick up and be aware of any changes within the household such as the atmosphere or routines. Talking and explaining about what has/is happening and also reassuring the child that it will not happen to them may relieve some anxiety and stress for that child. You can do this matter-of-factly and simply. Try not to expect that they will feel the same emotions as you. Keeping your own emotions calm as you talk to them can be difficult but having something to read or look at (such as symbols and pictures) can give you both something tangible to focus on.

Behaviour

Autistic children may not respond to the death of someone close to them in the same way as other children, but this does not mean they are not grieving. Processing the emotion and facts of the death can take much more time than you might expect. Don’t go on their immediate response to judge how well they are processing it. Changes in behaviour, increased anxiety, confusion, refusal to do things they normally do as well as talking about death are some of the warning signs that you must watch out for as this could mean your child needs more help and support as they are not coping as well as you thought.

Feelings

Autistic children can find recognising/expressing feelings difficult. To help your child to express/recognise their feelings you can look at different emotions in stories, pictures or, in the people around them so they can try and understand how they feel. We have some emotional literacy ideas on our blog about autism and anxiety.

Talking

When explaining ‘Death’ to an autistic child they may need help with understanding the idea of death as well as opportunities to express their grief.  You can use simple, concrete language and try to avoid using euphemisms such as ‘lost’, ‘passed away’ or ‘gone to sleep’. You may need to explain what dead means in concrete terms – ‘When someone is dead their body is no longer working and their heart has stopped. A dead body cannot move or feel anything, so there is no pain.’

Memory Box

A good way to help your child could be to talk about the person who has died. You could maybe create a memory box of things that belonged to the person who has died or that reminds the child of the person that has died. By making it together with a trusted adult may allow them to open up about their feelings and worries.

Social stories

Social stories are a great way to explain things to autistic children. They can be tailored to your child’s needs and help explain feelings and emotions as well as events, such as funerals and what has happened.  Lynn has created three social stories related to this topic in her book “Stories that Explain” but whatever you do in writing a social story keep it factual, positive and remember you are explaining the concept to them, not how they must feel or react. Give them choices about what they can do and explain the ways other people might feel or react without putting pressure on them to respond in a particular way.

Finally, we must let your autistic child know that it is ‘OK’ to have these feelings of loss and grief, be upset or angry, or even cry or not cry. Everybody is an individual and will deal with death differently. Attached are some resources that can help you and your child.

References
Katie Koehler DClinPsych (2016) Supporting children and young people with Autism Spectrum Disorder through bereavement, Bereavement Care, 35:3, 94-101, DOI: 10.1080/02682621.2016.1254437

Autism Bereavement Resources

(we do not endorse any particular resources, these are here for you to search and find the resources that work for your child).

https://www.autism.org.uk/about/family-life/bereavement.aspx http://www.thinkingautismguide.com/2017/10/helping-autistic-children-understand.html?
https://www.winstonswish.org/bereavement-service-professionals/
https://www.childbereavementuk.org/

https://www.amazon.co.uk/Stories-that-explain-stories-children/dp/1855036185  – Social Stories Book by Lynn McCann

https://www.andnextcomesl.com/2018/09/free-social-stories-about-death-and-funerals.html   –    Free social stories

http://www.socialworkerstoolbox.com/child-teen-grief-information-parents-caregivers Lots of resources on this site such as the one below:
https://victoriahospice.org/wp-content/uploads/2019/08/VH-ChildrenTeenGrief.pdf
https://www.elsa-support.co.uk  – small cost resources
http://blog.stageslearning.com/blog/autism-helping-understanding-death  – blog

childbereavementuk.org/supporting-a-bereaved-child-with-autism-spectrum-disorder – you tube video: https://youtu.be/P7EmW29Avx4

Autism and bereavement: https://www.youtube.com/watch?v=mzgtdtejQCs
Downloadable book to read with children. https://www.publichealth.hscni.net/sites/default/files/2020-04/Saying%20Goodbye%20children%2004_20.pdf