What makes transition work for Autistic pupils?

image from https://tentotwenty.com

Autistic pupils can find everyday transitions difficult, as well as the major transitions that happen. The reasons can include:

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

Transitions can cause a lot of anxiety.

If you’re involved in supporting children with every day transitions and often a visual timetable used correctly (see my blog post here) can help enormously and give the pupil some interaction and choices when appropriate. Giving them time to process and information about what to expect is important.  An example is a child who hated lining up because he didn’t know where he was going.  He did everything he can to avoid lining up, such as hitting others in the hope he’d be made to stay behind.  For him, we worked with him to ask “Where are we going?”;  So he didn’t have to rely on an adult telling him and he felt less anxious and more in control.

But what about the major transition of moving to the next class or from Primary to Secondary School…

When it goes well.

Transitions to a new class in the same school

The big transitions happen in September as the child moves to a new class in Primary or a new school as in starting secondary school.  For class to class transition, all the following principles apply, and I think it’s really important to help the child see what will be the SAME as well as different.  It’s how our brains cope with change.  We make connections with what is familiar to us, drawing on our past experiences and looking for connections.  We need to support autistic pupils in the same way.  I have written a social story booklet you can use here

Transition to secondary school

I’m pleased to see that many secondary schools are getting better at transition, particularly for their SEND pupils.  I say some, because others have not been so good.  I’ll come to that later.  When it works well, transition:

  • Starts as early as year 4.  Parents and the school should start to have the conversation of what is the next step for the child.  Parents need time to emotionally process the fact that their child is going to be making a major move. They will feel nervous too.  Starting early means they have time to look around, do the research and be ready for a more formal transition meeting in Y5.
  • A transition plan is put in place.  Some good resources for this can be found –  I love the resources below, do take a look.   They are really helpful in supporting parents and schools to work together.  Often the secondary school won’t get involved until the child has been offered a definite place.  DON’T PANIC.  There is still plenty of time for them to do a good transition.
  • The autistic pupil is helped to prepare, gently, positively and with the right support for them.  I often start with a timeline at the start of Y6.  This plots out the whole year and key events, including secondary applications, notifications of places, holidays, trips, open evenings and trips to secondary schools and so on.  We use different coloured pens and are able to add other things that come up.  This works better than a calendar for most, as they can see the whole year and how much time is between each event.
  • The pupil is familiar with their new class / school before they make the move.  This should take as many visits as the child needs, at different times.  For example, the first visit during lesson time when all the classes are in their rooms and the corridors are quiet.  Extra visits might be made to familiarise the pupil with the dining hall, where the lockers and toilets are and where they can go for help, or quiet places to go at break times.
  • The pupil has had the chance to meet key people who will be there to support them on their first day.   Photos may be taken to remind them over the summer holidays.
  • The pupil has someone they can discuss their worries and fears with.  They have the opportunity to chat in a group with peers/friends so that they all know they have similar challenges ahead and so that they can help each other with suggestions.
  • Relevant and up-to-date paper work has been prepared and passed on to the SENCO of the receiving school.  This does not always happen.
  • The Primary school begin to help the pupil learn to work with other adults, especially if they’ve had a long term TA, it is unusual and probably not possible for a pupil to have the same 1:1 all the time at secondary school.
  • The pupil has some input and contribution to their transition.  This may include choosing dates and activities to do on visits, taking their own photos or video around the new school, choosing their new school bag, preparing a place to do home work.(Advice for pupils who are struggling with anxiety or unable to do homework)
  • Parents feel informed, reassured and that they know who to contact when issues or questions arise.
  • The receiving teachers/school has had or is planning Autism training so that staff understand the spectrum and range of strengths and support needs in autism and how to help the pupil(s) that they are welcoming into their school or class.   You can start with my Ten Top Tips for Secondary teachers.

Schools who do good and successful transitions are flexible, involve the children and reassure parents.  One school I work with has a very successful summer school that has help numerous Autistic and SEND pupils to settle in well once they start Y7.  This school also has a dedicated Y7 support teacher, who doesn’t teach and works with all the pupils to deal with issues as soon as they come up right throughout their first year of secondary school.

When it goes badly.

Sometimes the move to a new class or school goes wrong for the child.  Often ending in permanent exclusion or at best, a lot of hard work to claw back the progress that should have been made.  Sometimes this is the time a specialist teacher is called for,  it’s not a good point to start.  We would much rather help at the actual transition stage and avoid some of these mistakes.  In the end, it can destroy a child’s confidence, their education chances and mental health.    Having had to pick up the pieces of failed transitions in the past, it’s always the child who suffers most.  I do a lot of work with our county’s Primary and Secondary PRUs. The PRUs I work with will agree with me. They are getting more and more autistic pupils who have been excluded from mainstream schools and many could have been supported better.

Bad transitions happen when:

  • No one bothers to put a plan in place.
  • The pupil is not given any preparation that is suitable for them.
  • Parents are not consulted and there is poor communication between the schools and home.
  • The pupil is ‘forced’ to move through exclusion or a hurriedly ‘managed move’.
  • Communication between schools is poor or non-existent.
  • Paperwork is not passed on so receiving school know nothing about the child’s needs.
  • A ‘no-excuses’ approach to behaviour is rigidly enforced from day 1 and child learns to fail straight away without any support to achieve good behaviour.
  • Staff don’t have any Autism training and think the pupils are ‘doing it on purpose’ (whatever ‘it’ may be).
  • Staff think that ‘kids like that’ shouldn’t be in their school.

I hate having to write this part.  Thankfully we work with some fantastic schools who get transition right.  It’s the stories we hear from other sources and when children have come to them on ‘managed moves’ or without the right support that we have realised that these things actually happen.  Parents then have a fight to help their son or daughter settle into a secondary school that doesn’t seem to want them.

If you are a parent, SENCO or teacher starting to think about a move to secondary school, or even to the next class then here are some great resources.  Good planning and preparation that involves the pupil will pay off generously in years to come.

http://www.autismspectrumeducation.com/uploads/6/9/9/1/699189/primary_to_secondary_transition_workbook.pdf

National Autistic Society advice on transition

Leicestershire Autism advice booklet on transition to high school

 

 

8 ways to help Autistic pupils manage anxiety

I was born worrying, so my mum said.  I don’t really know what it is like not to have a million worries running through my head all at once.  Every conceivable disaster is imagined once my brain focusses on a particular thought – There’s a downside to having a wild imagination.

But over the years I have learned a lot about anxiety and have many strategies that work for me in coping with it.  I can manage it.  I can recognise when it comes, what it is and fight it off.   Sometimes it goes quietly, sometimes I’m exhausted after the battle.   But I usually win these days.  Anxiety doesn’t control me like it used to.

There’s an upside to having a wild imagination too.  I can write stories and get really involved in a fantasy world in books and films.  I love craft and sewing.   And I can empathise when others tell me they are anxious all the time too. Anxiety’s energy can be harnessed for good.

When I work with children and young people who are autistic, they often seem anxious and many will tell me that they are…

www.emotionworks.org.uk

I do a lot of 1:1 and small group work with children and teenagers and whenever I bring up the topic of emotions, anxiety is what they all feel, often all the time.

When anxiety is there all the time, your brain is connected to the stress hormones and adrenalin that it creates. It is easy to develop an ‘I’m either high or low’ persona and crave the extremes of emotion because you don’t know how to ‘be’ without it.

You can also access our new Autism and Anxiety Course with Schudio TV for just £20.

Tony Attwood said that people with Asperger’s don’t know what ‘calm’ is (at a conference I was attending). This is what the children I work with tell me. It makes us telling them to ‘calm down’ useless. How can they do something they don’t recognise?

This is some of the support we use and I hope by sharing them,  you might find something to help your anxious autistic child.

1. One

Make sure first and foremost that it isn’t something that you are doing or others are that is causing the anxiety. This includes poor support, poor communication and not recognising their autism needs. It includes looking out for bullying and social isolation. Anxiety is not always the child’s issue but can be the result of other’s poor understanding and support.   It can be hard to accept that we are talking too much, nagging, dismissing the anxiety (“Don’t worry about that” etc) or causing sensory anxiety.  But it really is okay.  Son’t be hard on yourself but examine what you and others do, the autistic child, young person or adult’s responses and work to reduce the demands that cause anxiety from yourself, others and the environment.

2. Two

Check out their sensory sensitivities.This is the first port of call for me as sensory issues can be the source of most of an autistic person’s anxiety. Then you can help them find ways to manage the sensory overload or under-responsiveness, change the environmental factors that are contributing and introduce sensory activities.  Remember it can take time for an autistic child, young person or adult to recognise their own sensory differences and process the sensory information coming into their brains.  Some may be highly sensitive and anxious about going anywhere in case their senses may be assaulted, or not knowing what the sensory demands are causes anxiety. Others may take days or weeks to register the sensory demands and have a delayed reaction.  And some may need extra sensory input to be able to process their environment and the demands that are put on them.  It is so important to understand, support and work with the sensory needs of autistic people.

3. Three

I always explain and teach the child about their sensory systems and about self-regulation. A really good book I use as a reference is “Max and Me”. It is written with primary examples but I have used the story theme to talk to secondary pupils really successfully.  Mostly they will learn from experience and supportive people who understand and explain things to them.  It takes a long time to learn to recognise and self-regulate. We mustn’t expect the child to be in control of their emotions, but teach them how emotions affect us and explore what they are like inside, the physical responses as well as the thoughts and feelings.  “The incredible 5 point Scale” is a good visual resource for some autistic children and young people.  There is something else that they should be taught too, that we can seek out trusted others to help us regulate (feel better).

4. Four
I have been using Emotion Works (see my blog about this here) to get the pupils identifying and noticing that they are anxious and where or what triggers it. The visuals and components of emotions in the cogs are brilliant and I have used these with primary and secondary children,  just adjust the communication accordingly. We use symbols that come with the pack, pictures and talk, depending on the child’s communication strengths. It has been good to look at other emotion words that go with anxiety so that we can explore a greater range of situations and give words to the feelings they have. But the essence is this – we often only look at the behaviour and try to figure out what the trigger was.  We can work out the child is anxious, but it is really helpful to connect these elements  trigger = body sensations = intensity = behaviour.  From this we can look at what could make them feel better by addressing the body sensations and intensity rather than just the trigger.

5. Five
Naming an emotion helps. Recognising that this feeling is anxiety, worry, frustration and what the difference is does take time. Some autistic people have a difficult time recognising emotions. We just take it at the child’s pace. We might work with just 2-3 words or (in one particular child) 20-30 words.  Start to build your own word list of emotions and we find it useful to work with the 5 point scale.  We also use visuals from www.do2learn.com and group emotion words into sad, happy, angry and worried columns.  We make sure that at the start of the scale is one of the words – calm, okay or fine as our baseline.  Because, let’s be honest, we are not usually just happy or sad. You can help by making talking about emotions part of your everyday like and have a commentary on your emotions.  Simply say things like “I’m tired and it’s making me a bit grumpy.  I’m going to have a rest to make me feel better.”  See below for a way we have put a word list together with some of our pupils.  This took a long time, we didn’t rush it and let the pupils contribute at every point. We did work about what each work meant and felt like to each person.  With younger children it can take years to get to that point.

6. Six
Introduce positive emotion words. Living with anxiety 24/7 often means that the person doesn’t really focus on positive emotions and times that they might be happy or content are rare. Anxiety can be in the background all the time and so to bring positive emotions to the fore needs some training. Mindfulness techniques are really useful but make sure they make sense to the person and aren’t too abstract.

7. Seven
Teach the science of anxiety. My pupils love this booklet from GoZen. http://www.gozen.com/understand-your-childs-anxiety-infographic/ I use it with mainstream pupils, sometimes upper KS2 but mainly in secondary. It’s there to help the children understand what worry/anxiety is and how it affects us physically and our responses.

8. Eight
The last part is generally the longest and hardest. Finding ways that help us manage anxiety and change it into ‘calm’ or just ‘okay’ is okay. There are lots of things to try on the GoZen site but I know this is an individual pursuit. Coming alongside the child and trying things out, maybe recording what experiences help them feel better does take time. Often autistic children will use escapism to hide away from the anxious feelings. This is often in video games, books or You Tube videos. (which can be really helpful too.)  I try to help them find things that don’t just stop the anxiety being at the front of their mind for a while (because if that is your only strategy then there is a higher risk of turning to drugs, alcohol and other substances to mask the feelings later in their lives). Tony Attwood again, recommends ‘fixing the feeling’ by putting together a toolkit of strategies that work for them. I put together a booklet with the following headings and together we explore what tools the pupil has.

  • Physical Activity tools (Quick release of emotional energy)
  • Relaxation tools (Slow release of emotional energy)
  • Social tools (People and social activities that make me feel better.)
  • Thinking Tools (Thoughts, problem solving ideas, my favourite things, gratitude)
  • Special Interest Tools (Being an expert in my interest)
  • Sensory Tools (slowing down the messages to my brain)

These are not failsafe strategies and not all these things will help all autistic children. They are just some ideas and strategies I have developed with and for the children I support. It is important that the child ‘owns’ what they are learning and knows it’s about their own self-regulation. Anxiety is a huge part of life and for some, it is the environment that is the issue, not their self-awareness.  We work with children individually and in small groups to work out how it is for them and then work with them to help them navigate and manage the anxiety they feel.  It has to be with them, for them and at their pace. 

 

Please do share your tips and ideas too. Thank you. 

Sensory Overload from an Adult Professional perspective.

Photo from Reachout ASC conference

Do we think beyond our autistic pupils and wonder if teaching staff or other professionals may be grown up autistic people?  Sensory overload, social confusion and other differences don’t go away, but many autistic adults spend a lot of time and energy trying to ‘mask’ their difficulties in busy, demanding environments.  This anonymous account from an autistic professional explains why we should make more accommodations so that we can all work better together.  Hope we can all think to ask “What can help?”

Here is their account:

Last week I attended a conference for professionals in education.  It was an amazing event; inspiring, exciting and thought provoking.  There was only one problem. I spent most the day in sensory overload.

If you looked at me sitting on the outskirts of the conference, not making eye contact, not joining conversation what assumptions would you make?  That I don’t want to be there?  That I’m aloof? Unfriendly?   What you don’t see, what you don’t understand is that I am in sensory over load, fighting to keep myself together and maintain some sort of integrity.

In reality, I am an intelligent, knowledgeable, successful professional and this conference is where I want to be.  I look forward to talking to colleagues and debating the important aspects of our work, striving to change the landscape of society but sensory overload is incapacitating.  As I shake, struggling to breathe, the lights, the noise, the people, the never-ending rooms with no way of escaping to fresh air, to space, all becomes too much and I fight back impending meltdown.

It isn’t one thing that causes sensory overload.  I sometimes travel for work.  Trains are a nightmare for me.  The flashing lights, the view rocketing past the window, the deafening noise and small space cause me to feel nausea and panic within minutes.  Then there is the tube. There seems no realistic alternative to travelling round London yet the tube could not be more averse to the needs of autistic people.  My skin feels like it is on fire and I have the overwhelming needs to tear it off.  There is no room to breathe, the noise and lights are horrendous.  The experience is so overwhelming I can’t catch my breath, I go dizzy and panic sets in.  The need to escape is crushing.

When I arrive at the conference there is nowhere to escape to, nowhere to sit and self-regulate to hold the melt down at bay.  Because I have been unable to regulate the overload does not subside.  As I walk into a room full of professionals I respect and admire, I know I must make a decision, a simple decision, where to sit?   There are too many tables, too many people, so much noise I can’t distinguish people’s voices.  It is like there is a wrench jammed into the cogs of my brain and no matter how hard I try I cannot get it moving again.I am unable to join conversations, unable to step further into the room and the panic is rising and all I want you to know is I am not always like this;  I am a professional, I am knowledgeable, I am good at my job but the cogs won’t move.  People come up to me and talk to me and I can’t find the words to respond.  I smile and stumble over my words and they have no idea I am screaming inside about to break down.

Sensory overload is debilitating.  Terrifying.  A tornado that swoops in, wreaks havoc on your brain and body and leaves exhaustion, migraines, nausea and uncontrollable shaking in its wake. It can take me days to recover from an experience like this.

So why am I telling you this? Why do I want you to know what it feels like to be in sensory overload? When in sensory overload your communication skills are compromised more than usual and it can be impossible to tell someone what is happening.  After 6 hours of being at the conference I was brave enough to tell one person.  The response I had was ‘what would help?’  So simple, yet no one has ever asked that question before. Well, there are a few things you can do.

Provide somewhere quiet and let people know it’s there.  Sometimes a few minutes in a low stimulus environment is all it takes to self-regulate.

Allow people to stim.  Standing up and rocking, pacing, fidgeting or other such movements can really help to regulate sensory input.

If you see someone on the outskirts don’t assume they don’t want to join in.  Initiate conversation and give then a topic to talk about. It helps to ease the anxiety to have a focus.

Invite them to sit with you.  Sometimes a friendly face can mean the world.

Remember, every autistic person’s experience is different and just because you are not explicitly aware of any autistic people in your target audience, doesn’t- mean we aren’t here.

The Other Side of Autism.

 

By now you might have heard the story about a dad putting out an appeal for a blue Tommee Tippee cup for his autistic son, Ben,  who won’t drink from any other cup.  The cup his son has used since he was 2 years old is wearing out and there is nothing at all they can persuade him to take a drink from. Hundreds of identical cups have now been sent to the family. Tommee Tippee have made a special batch from an old mould so he’ll have a life time supply of identical cups.

Doesn’t that make you feel good? Does it make you say aaahhh, and restore your faith in humanity?

But have you read on? Have you read that the boys family can still not persuade their son to drink out of any of the new cups, even ones that are battered and old too? It still has to be the same old cup. They have all these identical cups, but to Ben, they are not.  He is not being awkward or naughty.   Ben is autistic. 

I spent a good few years working in a special school with children with this type of autism. Children who found the world completely confusing and overwhelming. Children who could not speak at all or who could speak but not communicate what they were finding difficult. These were children who were interested in many different things, who had a sense of humour and could explore and interact with those that they felt safe with. They were also children who made progress. But the progress we wanted to measure was not the progress demanded by the National Curriculum. 

There are children with autism who will grow up into adults who need lifelong care. They will never be able to live independently and many will never learn to talk.  They will communicate and show their feelings through behaviour. That behaviour might be happy, excited, withdrawn, violent, self-harming, repetitive or self-stimulating. Their families must care for them and must fight to get the support and services that they are entitled to, but are rare to find working well. Many will need to be supported in social care services, supported living accommodation and forever be at the mercy of politicians and dwindling resources. They will have to rely on staff who are poorly paid, work long hours and shifts. They may be lucky and find a place that is well run, trains it’s staff, understands their personal needs and abilities and provides a life for the people who it cares for.  These places do exist and families whose children go to these as adults are profoundly grateful that they do. You probably don’t want to think about the alternative, but people with this kind of autism are vulnerable to bullying, abuse, neglect and not having any of the dignity they deserve from those who are paid to look after them.  It is no wonder families with children with all kinds of autism are worried about their child’s future.

This kind of autism seems a world away from most mainstream classrooms.   Autism is truly a wide spectrum.

In the TES this Friday, Uta Frith wrote about how she thinks that only special schools can really teach children with autism well. She made the point that all children on the autistic spectrum need a bespoke education programme because our education system is not set up for them at all. After working in both the mainstream and the special school sector I would have to agree with much of what she says. Yes, children with autism need their own bespoke education plans. (It’s what we do in our role as a specialist teachers, even in mainstream schools). They need well trained staff who ‘get it’ and know many different ways to provide good communication, education, life skills and social interaction. Every child with autism is different. There are many who can cope with and survive our mainstream education system, on the surface. With a good support system and understanding of their condition, many can thrive and achieve in mainstream schools. (There really are those that do, but it is often at the expense of having to work much harder than anyone else and experiences of bullying, social exclusion and anxiety far beyond what most children go through. )

But those with the kind of autism that means they can’t even pretend to cope in a mainstream school – they need the specialist schools, staff and systems that work for their needs, not the league tables or government incentives. The National Curriculum means nothing to them. A safe, secure, predictable learning environment with staff who know how to teach them, with therapists, equipment and opportunities to learn in the community can be better found in a special school.

I’m a fan of inclusion. I believe in it with my whole heart. But not at the expense of failing children whose needs are profound and very different from the way we do things in mainstream schools. Mainstream schools as they are cannot meet the needs of all autistic children. Especially the ones like Ben with the Tommee Tippee cup. We need to recognise the amazing specialist work the teachers and staff in a specialist school do, we need to recognise that the curriculum for many children with these needs will work best if it is matched to their needs. 

My only worry (and it’s a big one) is that by seeing special schools and children with these profound needs as separate, then we encourage social exclusion. My greatest desire is that all children grow up seeing disability as part of being human. That they don’t think it is clever to call people with learning disabilities names in the street and that they want to make a society that cares for those who need caring for all their lives within a fair and competent system. I hope that they fight for the society that makes it so. But if they never meet or interact with people with that kind of disability as children, they maybe they won’t even know they are there when they are adults.