Spoon Theory and Autism.

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My friend @AnnMemmott who blogs at  http://www.annsautismblog.co.uk  first introduced me to the Spoon Theory in relation to autism.  It was originally created by Christine Miserandino when asked about her chronic illness, (you can read the original post here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ ) but is a great way of helping us understand why school and college is such hard work for autistic children and young people (CYP) .  @aspiemusings has also written a good post about how it relates to her as an autistic adult. http://musingsofanaspie.com/2014/10/15/conserving-spoons/

Let’s imagine that the social, sensory and intellectual energy an autistic person has each day can be measured in spoons.

An autistic person can start the school or college or work day with a full drawer (which may be only half as full as a typical child) or with some of their spoons already used up in dealing with the demands of getting there.  Depending on various factors such as whether they slept, if their family remembered to say goodbye the right way, if their clothes are itching their skin, if their routine was changed, or any number of other seemingly incidental events, they may be starting the day with, say, only 5 spoons instead of 10.

Then they need to start using their spoons.  Each set of instructions, each set of work demands, each time they have to organise themselves, follow a complex set of instructions or cope with change, and each social interaction may cost the autistic person a spoon.  If there are sensory sensations that are overwhelming, then another spoon is used up in regulating and keeping calm. If they have to work in a group more than one spoon may be needed. Break times are not relaxing, another spoon or two is used up in coping with all the social interaction, noise and lack of structure.  Some  manage to save a spoon by shutting off, taking the time to be alone, so that they can cope with the next set of lessons.

I hope you can see what might be happening

So you have a child or young person who seems okay in the morning but always seems to lose it in the afternoon.  Or they won’t join in anything at break times and paces around the perimeter of the yard or social space.  Or a person who has meltdowns some days but is fine on other days.  Or parents ask you what you are doing to their child as they always have a meltdown as soon as they come out of school…and getting them to do homework is impossible.  You may have a colleague at work who seems not to be able to speak to you on some days, unable to socialise and seems distracted and distressed.

You might assume you need more structure in the afternoons.  You might assume you need to teach the person some social skills so they can make friends at break times. You might assume the parent isn’t disciplined enough.  You might put all kinds of practical support in place, but it doesn’t really work.

It may just be that the autistic person has used up all their spoons.  They have no communication, organisation, sensory, social or intellectual energy left.  They might just be able to keep it together in the morning, but then are far too exhausted to carry on in the afternoon.  Some days there may be no spoons to deal with the things they usually seem okay with.  They might even be able to keep it together through the day but cannot contain themselves in the safety and familiarity of their home.  Some even manage to borrow spoons from the next day but there will be a day when there are no spoons left to borrow and the person has a major meltdown. 

arrow graph at first spiky and then pointing downwards.

We can help by recognising the limited amount of spoons an autistic person may have.  We can help them conserve their spoons to last through the day and we can help them find ways of finding ways to add to their supply (not as easy as it sounds). Through:

  • Giving them calming sensory breaks which are timetabled and regular.
  • Look at your environment and see where you can make it calmer and more accessible, considering the persons sensory needs.
  • Break tasks and instructions into more manageable chunks, give them visual or written reminders so they can check them and allow them time to do each one.
  • Support organisation and set up a communication system where the autistic person can let you know if they are struggling.  Be aware that many find this difficult especially when it demand using a ‘communication spoon’ and they may not be able recognise that they are struggling until it is too late.   But structuring tasks for them whether through a list, visual schedule, practical equipment or a writing frame can still help.  It will be useful if you can learn to ‘read’ their autistic non-verbal communication and know when to reduce demands. 
  • Let the person do activities related to their special interests.  If the topic doesn’t lend itself to this, then allow them time with their interests once the task is finished. 
  • Let them request ‘time out’ or a break.  It is important for the autistic person to recognise when things are getting too much for them and request a break before frustration and overload leads them to communicate this in behaviours or reach the point where they cannot cope and meltdown happens. But this may take a lot of support to help them learn to recognise their pwn state. 
  • Let them have alone time at break times if they want to.  Or give them alternative things to do, especially at lunch times. Social interaction can be encouraged at other times when they have the spoons to cope with it.
  • Make sure they are able to do homework and be as flexible as possible about it.  Ask yourself if they really need to do it at that point.  See if there is a way they can do something more interesting to them such as a project about their special interest. Or for many of our students, homework is just the ‘straw that breaks the camels back’ and we need to cut it our altogether.  
  • If the person is having a minimal spoon start to the day, increase the sensory breaks, reduce the social and work demands and expect that they will find it much harder to concentrate.

If you understand the autistic person and they can trust you, they won’t take advantage of your adaptations, they will feel safe, understood and be able to cope with more challenges than maybe you thought possible.  Maybe you should keep a couple of spoons on your desk with the person’s name on, and remove one when things are not going so well for them.   Then think about how you would cope with just one spoon left and no way of buying any more. 

Have a look at the rest of my website for free resources, information about training and courses I deliver and great autism links.   

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Post 16 Transition for Autistic Students.

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A group of teenagers at the top of a stairwell in a college

At this time of year many secondary teachers are thinking about the looming GCSE’s for their Y11’s and may also be thinking about what happens next for their students. If a student is autistic then there are additional challenges when leaving school and moving on to the next step in their educational lives.

I often find that the student’s themselves realise in Y10 that they will soon be leaving school. For some they may be so relieved that it’s all they want to think about.  For other’s it’s such a massive change in their lives, after all, being at school is all they’ve ever known, that the anxiety it causes can seriously impact on their concentration, mental wellbeing and motivation in school.  Some are so anxious, they cannot bear to talk about it.

This blog is co-written by @Mr_ALNCo an FE Teacher who’s created a role for a Transition Support Worker at his FE college in South Wales. First I am going to look at transition to college or training from the viewpoint of the school, and James is going to offer advice from the college’s point of view.

from www.do2learn.com

What Secondary Schools can do.

The Y10 and Y11s I work with who are autistic often very worried about leaving school. However, working with them to explain what leaving will be like, what options they have and developing some plans that enable them to see the way ahead can be really important. If they have an EHCP then transition meetings should start in Y9. By the time they get to Y11, the meetings should be with the college or other establishment they are going to go to and make a plan of support that the student and their parents can contribute to.  If no EHCP their needs are still important and preparing them for college or apprenticeships is just as important.

  1. Include their parent’s ideas and start with a familiar member of staff who knows the student well.  With the student, work out a number of choices they have for the their future. Talk about their aspirations, their favourite interests and subjects they might do well in.  I use a decision making visual to look at the pros and cons of each option, including what grades might be needed (and what option is available with lower grades if relevant.) This information is shared with parents and the family given time to explore and discuss with their child. I have done this in Y9 to help a student choose their options, but mainly with Y10s and Y11s,  depending on the individual.
  2. Use the internet to research the possible colleges and courses the student might be interested in. There are often a few places to choose from, depending on your area. School 6th Forms might be good for some students for familiarity, but for others might be limited on choice of subjects. Every student will need treating individually to find what will work for them.
  3. Find out what apprenticeships are offered and if support is available for their SEND needs. Present that information to the student and their family, and encourage parents to arrange some visits to these places as early as possible. One student I have worked with has been set up with a farming apprenticeship in conjunction with the family, a local college and a local farm. All bespoke for him.
  4. Talk to the student about growing up and teach them some practical life skills, again working together with parents. Using public transport, making phone calls, sending emails, using money and paying for things are really important skills to help them move on from school into post 16 life.
  5. Plan, talk, prepare, visit, familiarise, support and talk positively about the next stage. But don’t overdo it. They still have to finish their time at school and some autistic pupils might not be able to cope with thinking about exams and college. In that case, plan some transition support after GCSEs have finished. One school I worked with brought the student back into school after GCSEs and he worked with his previous TA on getting ready for college with great success.

college students in a classroom

And now from @Mr_ALNCo

What Colleges can do.

Transition for learners with SEND/ALN is something that traditionally is rather inconsistent across the FE sector in Wales or where it is consistent, the chance to share this good practice is often limited. Many practitioners who work with learners with SEND/ALN know the importance a good transition pathway into college can have for learners.

I am lucky, in that I have a supportive Principal and Vice Principal who supported my view of the importance of transition, allowing me to create a specific role to help support transition and reviews within the college. A new post which we feel will have huge beneficial impact.

Much like the Local Area Reviews now taking place in England, Wales has seen a huge change in make-up of its FE provision over the past years, resulting in fewer, larger, more resilient colleges.

In addition to this, the Welsh Government has introduced a bill into the Senedd in Cardiff Bay which, if passed, will bring about the biggest change to the SEN system in Wales for the past 30 years. Much like the duties contained Children and Family Act 2014, (although there are some differences), FE, for the first time will have new statutory duties, one of which is to maintain an Individual Development Plan for learners with SEN/ASD. If you want to know more, visit the Welsh Government’s ALN pages on its website.

It is crucial that FE in all areas start to plan for this now. If we want better outcomes for our learners with SEND/ALN we need to make sure that they get the best possible start in college. How then can we ensure this happens? From a FE perspective looking out to fellow practitioners in schools, the 4 elements below go some way to helping

  1. Link with your college’s Learning Support department. There are many talented and caring professionals who can advise on course choice, adjustments and transition arrangements. Open up the lines of communication and don’t be afraid to ask questions
  2. Share any relevant material which will help support the learner. If the learner has a One Page Profile, this is a great way for staff in college to get to know the learner.
  3. Invite the college to any Annual Reviews which are taking place for learners who are expressing an interest in college. The more we know about the learners’ aspirations and support requirements, the easier it will be to work together.
  4. Many colleges hold open days and bespoke events in quieter times for learners with SEND/ALN, if not contact the college who will normally be more than willing to arrange a bespoke meeting/tour. Our college has recently introduced VR tours, something that fellow FE colleague, Joe Baldwin has used as a powerful transition tool.

For each learner, we hold a review within the first term to see how they are settling into college. This gives us an opportunity to change the things that aren’t working and continue the things that are working well.

Much like our learners, we as a college are always learning.

@Mr_ALNCo

 

The right way to use Visual Timetables

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A strip of small symbol pictures set out in a sequence of a childs day at school on a yellow card background.

I bet anyone whose ever had a specialist in to advise them how to support an autistic pupil has been told to use a visual timetable.   I bet it’s written down as a strategy in almost every statement or EHCP for autistic pupils.

You might have a visual timetable on your classroom wall.  You might remember to put up the schedule for the day, every day, and even to take off each picture as you finish each activity.   You might be remembering to do this for a child’s individual visual timetable.  Well done if you have.   However,  if you haven’t had them explained to you properly, it can easily seem as a lot of work for little reason…

Research shows that many autistic people struggle to understand the nuances of verbal language, processing language at the speed of a typical teacher speaking and understanding the inference of language.  Visual support enables the pace of instructions and information to be processed at their own pace and are available to go back to.   One of these is a visual timetable or schedule that sets out the routine and expectations of the day.

I’d like to help you understand the full purpose of a visual timetable.  It’s not just to let the child know what’s going on and in what order but it’s an important teaching tool. Here are some of the main teaching opportunities:

  • Developing memory and recall skills. Seeing the structure of the day can help with memory skills for children who think better in pictures than in verbal language.  The symbols can be retrieved from the ‘finished’ pocket to review the day and put things in time order.
  • Teaching organisation and independence skills.  The child should be managing their own timetable.   That means self-checking what they should be doing and where they should be, managing the taking off of the symbols and putting them in the finished pocket themselves.
  • Developing working memory skills – seeing what is on the timetable can make recalling what has been done in other lessons easier. This can be supported by a lesson schedule or subject diary.
  • Executive functions such as planning, predicting, monitoring and timing can sometimes be difficult for autistic pupils.  A visual timetable scaffolds those skills and most importantly the child can ‘self-check’ where they are up to.  If your memory is poor and your anxiety high, then a visual timetable is THERE and easy to check.  It doesn’t rely on the child having verbal skills or opportunity to ask an adult.
  • Less reliance on an adult prompt.  There can be a learned helplessness when a child gets too used to an adult verbally promoting them all the time.  This is why know how and where to check something for themselves is a good skill to have.  Especially thinking about them growing up and how there is likely to be less attention from an adult at Secondary school.
  • A visual timetable can also let the child know when their sensory breaks are or unexpected events or changes are happening.
  • You can prepare a ‘change’ symbol to support a child learning to cope with changes or unexpected events.

Some useful symbols for changes

Different visual symbols that can be used for changes

I sometimes see visual timetables as wallpaper, and by that I mean, they are pretty pictures on the wall – but then sometimes the pictures are not even that day’s schedule and the child hasn’t been taught to manage the timetable themselves.  I might be told “Oh, we tried a visual timetable but it didn’t work,” Or “They don’t need a visual timetable, they’ve grown out of it,”  but the pupil still has poor independence and organisation skills.

Visual timetables grow with the child.  They should be age and developmentally appropriate.   I have one – It’s a full term calendar on one sheet that I write in all my school visits, INSET sessions and meetings. It’s visual and I’d be very anxious (not to mention, totally lost) without it.  Diaries and lists provide a similar visual aid to my life and how it is organised (or not!).  If we want autistic pupils to be able to develop good organisation skills, a visual timetable can be a great start.  Choose the right format for the child and you will get it right.  We might start with objects of reference, use photos or symbols or colour coded words, and  the format can develop as the child does.  Sometimes teachers thing a child doesn’t need it anymore and take it away.   Then the child’s behaviour and independence can begin to deteriorate.   It is often the case that what they needed was an updated timetable rather than taking it away.  It can surprise us how much the child was relying on their visual timetable.  It is ok to have one all their lives – as they get older we teach them to self-manage their timetable more and develop their own formats if necessary.  Like we do as adults with our diaries and lists.

AND IT DOES NOT MATTER WHETHER IT IS HORIZONTAL OR VERTICAL!   Let’s dispel this myth, once and for all.  Use whatever fits into your space and what the pupil can easily use.   I have known staff who have worried about this so much because one professional said do it one way and another said do it the other way, that they didn’t actually start using the visual timetable for weeks because they were so worried about getting it wrong.

To share an example.  Over the years I’ve worked with some pupils who were at risk of being excluded for behaviour.  A visual timetable used to show them the lessons, ‘calm or choice times’, sensory breaks and, most importantly, when home time is, has regularly (along with other strategies) made a huge impact in helping the child navigate the day, reduce stress and anxiety and therefore reduce challenging behaviours.   Honestly, it can sometimes be the pivotal strategy that makes all the difference for the child.

If you want to know more, there are lots more advice and examples in my  books: 

I have Widgit ‘Communicate in Print’ software which I love for not only making visual timetables but also for supporting a pupil’s writing, reading and curriculum access.  

 

 

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Autistic children and Group Interactions

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three children working on a table activity together

Hilary works with us and is autistic and a maths teacher (amongst her other talents). She has a great way of explaining what being autistic is like and we often talk about the apparent anomaly between her confidence in speaking to someone 1:1 or to a whole group of students, as opposed to being in a group or party situation with lots of people to interact with. I love how she describes it….

By Hilary

On a one to one, there is, well, one interaction. When another joins in then there are 6 potential interactions, because there is each person interacting with each of the other two so that is 3 interactions, plus each person’s interaction with the other 2, when the other 2 act as one in some way, eg opinion, agreement, etc. So 6 in total.

Now, there is an easy way to work out the number of interactions for a given number of people.   If there are 3 people then we simply need to multiply 3 by 2 by 1 = 6 This is written as 3! The exclamation mark is known as a factorial sign.    So then one more person joins…now there are 4! Potential interactions which = 4 * 3 * 2 * 1 = 24   This may possibly be about my limit but mostly if I am one of the 4 people, but it’s still a big challenge because now I am feeling all the unspoken undercurrents that 24 potential interactions produces.    Throw into this several different personality types and possible tension between 2 or more of the people and it’s possible to see how a storm can quickly brew of unspoken emotions, thoughts, etc.

However, I generally hang on in there, but know I’ll pay the price with exhaustion and several recovery days where I avoid as much social interaction as possible. (Just a note to add that I do of course sometimes ‘do’ social groups with friends I know well or am comfortable with, as a trusted group of friends makes a huge difference, as does having a focus such as, having a meal with friends, and because I am already familiar with the types of interactions which happen and the whole experience is less exhausting. the better I know people in the group, the easier it is, generally.   I still don’t ‘do’ social events and social groups often though.)

Now, a fifth person comes along, and this basically explodes in my head. 5!   Potential interactions, that is 5*4*3*2*1 = 120  undercurrents which are cross-firing what is actually being said…add in a few looks, glances, smiles, frowns, tones of voice, buttings in, and there you have it,   I’m gone, looking for the kettle and a quiet corner and maybe one person I know well enough to have a nice quiet brew with or better still friends’ cat(s) who totally understand and retreated to quiet corners already.    Add one more person…and now the potential number of interactions rises exponentially… 6!    That’s 6*5*4*3*2*1 = 720 7 people, 7! = 7*720 = 5040 potential interactions.

What generally happens though, is that the limit of a useful group is probably 4, though 3 is in my opinion better still.   At 5, usually the quieter people give way to the more verbal, and melt into the background either gratefully or in some frustration.   So this curbs the actual number of interactions, but not by much due to the unspoken emotions which flow like wifi among the group.   I have come to realise that it must be an acute awareness of these ridiculous number of interactions, with equal awareness of the accompanying undercurrents that make the whole group experience feel to me as if I were being slapped in the face every nanosecond.   The huge difference between a social group of say 5 people and a group which has gathered for a specific focus on say a film or lecture or even in some sense to play some sort of game or sport, is that if there is one focus that the group has then immediately it is in reality a one to one situation – almost, with each person in the group interacting mainly on the focus, and all 5 people also acting as one person interacting with the focus.    Giving a public lecture, teaching or speaking to an audience is in reality a one to one situation, so, poses no threat.    This is why teaching, speaking is no problem, or being taught etc., but groups – where’s the kettle.

How can we help? 

Now in a classroom there are often way more than 7 people to interact with!  Often we ask children to work in groups and then expect them to know how to get on with it and work together.  For an autistic child this can be a nightmare. Not only have they the amount of interactions to attend to and switch their attention to, there is often intolerable background noise from other groups and many other sensory demands.

 In a school I often suggest that the teacher supports the autistic child to work with just one other person. In a pair, they can be much more successful in sharing ideas and the task to get it completed. You may need to teach or structure the task in a way that each child knows what their role is and what they are expected to do or produce.  Learning to listen to each other and deal with differences of opinion or ideas is a challenge in itself (for both children in the pair). Many secondary children nI work with say that school life would be much better if teachers would let them work in a pair on shared tasks, rather than making them work in a group.  Please consider what Hilary says about groups and the number of interactions when you are planning shared tasks to do in your lessons.  And make sure the person who they work with is someone who will work well with them.  Some children will get better at working in groups that are calm and well structured, others may take all their effort just to work with one other person right through to the end of their school days.  

So here for you is a visual about how you can support partner work in your classroom. (Full social story can be downloaded below)

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5 things to know when supporting Autistic students in FE

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 I was invited to Cardiff and Vale College to do a workshop about supporting autistic students at 6th Form college.  Cardiff and Vale college support students between the ages of 16-18 and beyond, including adult learners and in many different subjects, courses and situations.  Obviously, all autistic students are different and telling them all I wanted to share in just 90 minutes was a struggle.  So I put this information together wanted to also share this with you on our blog.  I’ve organised it to tell you 5 key things I want you to know about autistic learners in FE colleges… 

1. The first thing you need to know about autistic students is: They are all different.

That means although they may have the same diagnosis they do not have the same characteristics, strengths, interests, personality or difficulties.

You may have taught autistic students in the past and all the things that worked for them may not work at all for another autistic student.   Autistic students can have other diagnosis/learning difficulties as well, eg. ADHD, OCD, PDA, Anxiety disorders, dyslexia, dyspraxia, sight/hearing impairment etc.   Autistic girls can be very different from autistic boys, but as I said, they are all individuals.   However, autistic girls are more likely to mask their autism (you think they are ‘okay’ and seem very sociable) but they are often struggling with crippling anxiety trying to ‘fit in’.

The strategies that make good support for autistic students are quite similar to the strategies that help them at any age, but they need to match the needs and age of the student so that they have some ownership of what helps them.  Teachers can still make sure that their communication suits the student and there are some tips and hints in the handout attached to this post.  Generally the adage “If they can’t learn the way you teach, then teach the way they learn”  can be the best approach.  Students I know don’t want cosseting but want to learn how to be independent and how to manage problems that arise. The support they get in college should be less intrusive than it was at school but that does mean we need to put strategies in place like visual timetables, class schedules, chunking and explaining work in ways they can manage. A key worker, who understands autism, that they check in with regularly can also be very important.

Here is an example of a visual timetable, made with a student suggesting how they wanted to organise their ‘study day’ when there were no lessons. She sat with her key worker as she came into college, discussed any changes and then she managed the rest of the day herself.

2. The second thing you need to know about autistic students is: They may take longer to grow up.

For some autistic young people it could take five to ten years longer to go through puberty. This means that when they are with you between the ages of 16-18, they may still be much younger in their outlook, interests and emotional development, even though physically they are the same as everyone else. This can lead to isolation, bullying, difficulties understanding social situations that they have not yet got the maturity to work out. There is vulnerability to exploitation, social and sexual. It can also affect their ability to understand some of the work and expectations on your course, but may not, .some autistic students can be academically much more mature than their peers because they have often been super-interested in the subject for many years before coming to college.

Self-identity is something that so many teenagers struggle with and as they come to college, the freedom to experiment with style (after having not wear school uniform all those years), identity and groups to belong to is part of their development at this age. Autistic students will be searching for the same sense of identity and belonging and may need extra support to do this (including giving them more time to process their experiences and ideas). Time, kindness and encouragement is important. It is also worth keeping in mind that possibly 30% of autistic young people identify as LGBTQ+ and could need support as they work this through in these college years.

3. The third thing you need to know about autistic students is: They may have a different perspective/ agenda/focus than you are expecting them to.

Autistic students can have a different perspective on the content and views of the work you are covering. They may contribute that view in the middle of your lesson, seemingly taking off at a tangent. But if you really listen to autistic students you can find that there is a lot that they can contribute and their depth of knowledge can be astounding. However, the difficulty comes when what they know and think about a topic clashes with what the curriculum (and exam board) wants them to regurgitate in an exam. It seems unfair to me, and I can certainly see why it seems unfair to students. As a tutor, it can be easy to find yourself becoming frustrated when you want to follow your lesson plan.

Another thing that tutors need to be aware of is that behaviour that seems to challenge you, usually has a very logical reason for autistic students. Autistic students can be intensely focussed on one thing when you want them to focus on something else. Some autistic students are often honest and say exactly what they think (with no social filter) or maybe very eager and anxious to say and do the right things, whilst not always judging it correctly. They may be anxious about EVERYTHING and be catastrophising about EVERYTHING. Anxiety may be their biggest driver, or it could be the need to have things predictable and controlled. Their memory may work quite differently,  associative rather than time-based, or able to remember many details but have difficulty generalising. Understanding that their perspective is different from what you might assume is helpful so that you don’t assume. Instead, listen to the student and where possible map out what they think and know…then you can add your point of view or another perspective to the map so that they might see why you are giving them that perspective.

Here is an example of a mind map when a student was struggling to do homework. The green was written directly from what the student said, we then discussed solutions and help available together. I find this way of problem solving much more effective than just talking about it as it is a visual reminder, gives the student chance to ‘see’ the different perspectives together and feel that you really have listened to them and understood their point of view.

4. The forth thing you need to know about autistic students is: Sensory issues are often the most important driver of behaviours, mood and reactions.

Autistic students are likely to have sensory processing differences. Some will be more obvious than others and they may have found ways of managing their sensory needs at this age. However, it is more likely that the environment will trigger sensory difficulties for your student. They can be sensory seeking and/or avoiding. Noise, light, movements, distractions, smells, unexpected sensory challenges, changes, food, touch, can all lead to sensory stress, overload and meltdown or shutdown. Many autisitic students are highly stressed trying to cope with sensory overload and the effort needed to manage that alongside concentrating in class is huge and exhausting. “Stimming’ is a repetitive action that helps an autistic person feel grounded in the world around them, brings joy and helps them calm down if stressed. This is perfectly natural and okay. A meltdown or shutdown is when their brain is unable to process any more information and shuts down. For some this is obvious as they are displaying distressed behaviours, some may become aggressive, others may look as if they have ‘switched off’ and you may not even notice. Please be aware that talking to them at this point is like adding fuel to a fire. You are giving them verbal noise to try and process when they cannot. The key is to make sure they are safe (maybe needing to go to a safer area), use as little language as possible, and give them time to recover and ‘reboot’. These are far more distressing for the student than they will ever be for you.

Do find out from your student what adaptations you might make in your classroom. Letting them choose where they sit, wearing a baseball cap of headphones when working independently, turning some lights off so it isn’t so bright, letting them chew gum and even check whether the paper they are using is the best colour, texture and size for them to work with. There are many small things that can make a huge difference. Be aware, also of internal sensory stress for your student. They will still be going through puberty so menstruation, hormonal moods and hygiene may all have associated sensory issues that may affect a student’s learning or mood. Be sensitive, for them these sensory responses are much stronger than you could probably imagine and dismissing them or sanctioning a pupil for having sensory needs will not be fair.

 

The fifth thing you need to know about autistic students is: They have potential, ambitions and prospects.

Most autistic students are now doing subjects they are interested in and have chosen – although they may have one favoured. Students with ASC are the inventors, the creative thinkers, the IT innovators, the farmers, the business owners, the workers and managers, the psychologists, the comedians, the writers, the scientists, the ‘thinking-outside-the-box-ers’, the lecturers, the mums and dads of tomorrow. SO: Look out for The talents, The special interests, The details they notice that no-one else does, Their creativity and The perceptions that your Autistic students have and develop these.

It is a good view to have that autism is part of the human spectrum, a difference, not a deficit. There will be difficulties that need support, but not so that we limit the potential of our autistic students. You could help by:

Voluntary work– Consider giving autistic students supported opportunities to be involved in a project-based small group activity (such as a photography exhibition or charity event.)
Support preparation for Uni and for the world of work wherever possible.Involve parents and arrange supported visits and meetings with Uni learning support services.
Show them autistic role models.You tube is a great source of autistic young adults sharing their experiences and encouraging others. EG. Chris Bonello (http://autisticnotweird.com), Sara Harvey (Agony Autie on You tube).
If possible arrange a supported work placement.– practical experience, finding understanding employers and knowing the law, rights and adjustments they can ask for, will be very valuable.
https://www.princes-trust.org.uk/help-for-young-people/who-else/housing-health-wellbeing/wellbeing/disabilities– for more agencies that might help.

 

Why look for girls on the spectrum in school?

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This guest blog is from Joanna Grace who I first knew through her start up of the Sensory Project in 2010.  I liked what she was proposing to do and I pitched in a tenner towards it and watched how (thanks to much more generous people than me) the Sensory Projects have grown. In her own words:

Joanna Grace is a Sensory Engagement and Inclusion Specialist, Trainer, Author, TEDx speaker and Founder of The Sensory Projects.

Consistently rated as Outstanding by Ofsted Joanna has taught in mainstream and special school settings, connecting with pupils of all ages and abilities. Since launching The Sensory Projects Joanna’s work has extended into adult care for people with complex needs and dementia. To inform her work Joanna draws on her own experience from her private and professional life as well as taking in all the information she can from the research archives. Joanna’s private life includes family members with disabilities and neurodiverse conditions and time spent as a registered foster carer for children with profound disabilities.

Joanna’s books Sensory Stories for children and teens , Sensory-being for Sensory Beings and Sharing Sensory Stories with People with Dementia sell globally. She has a further four books due for publication within the next two years, including two children’s books.

Joanna is a big fan of social media and is always happy to connect with people via Facebook, Twitter and Linkedin

In this blog she tells us why it is so important to be looking for girls who may be on the autistic spectrum…

I was once told “boys on the spectrum make problems for other people, girls on the spectrum make problems for themselves” and although I disagree with the statement in a number of ways, that girls with autism tend to create more problems for themselves than for other people is something that resonates within an education environment.

Girls with autism often go undiagnosed until adulthood. In school they maybe quieter than average, their lack of social circles probably puts them on the edge of the squabbles that plague neurotypical female friendships through primary and secondary school. They are likely to be studious, their autistic brain’s willingness to focus and love of structure and rules fits them nicely into your academic expectations so your grade book won’t flag them up as a concern.

Does this mean autism is less severe in girls? After all if we are noticing the boys surely that means it is a bigger problem for them/with them?  This question makes me think of a meme that I saw doing the rounds of facebook recently, it was a quote by Adam Walton: “Mild autism doesn’t mean one experiences autism mildly, it means YOU experience their autism mildly. You may not know how hard they’ve had to work to get to the level they are.”

https://www.pinterest.co.uk/pin/132856257740455067/?lp=true

Whether you look to support girls on the spectrum in school depends on what you consider your role in school to be. If it is simply to fill children up with knowledge and you can point to the fact that this girl is duly filled to the brim with knowledge then her autism is no concern of yours.  If you believe that your role in school is to prepare children for life and to ensure their present life is as well rounded and as happy as possible, then her autism is your concern.

Girls on the spectrum are likely to learn the rules of conduct in school quicker than most, they will learn how to mask their autism, and expend an enormous amount of energy doing so.  Of course I am writing in broad brush strokes, to quote yet another adage: When you’ve met one person with autism, you’ve met one person with autism. Expecting people with autism to be alike is akin to expecting people with neurotypicism to be alike.  Perhaps I should talk about particular people.

Professional Experience

Recently I was working in a school where they have a girl diagnosed as autistic whose mother is very worried about her because her behaviour at home is becoming dangerous to her own safety. The school see no issues in the classroom and confided in me that they felt this was “a parenting issue.”  Let me make this very clear: Autism is not a parenting issue.  That school are putting that child in an environment that she can barely cope with and it is having a significant impact on her mental well being. If it continues into her teenage years she will be at risk of suicide.

I have also attended a support group for parents of children with autism.  We did a count of how many parenting classes everyone had done, and how many more they had been offered. Imagine if you had a child who was a wheelchair user, who was struggling to get around in school due to a lack of ramps.  How would you feel if the school’s proposed solution to this was to send you on a parenting class? How would you feel after your third class? Parents of children with autism often appear to be short on patience with professionals. There are very good reasons for this.

I supported an autistic girl who was struggling at secondary school with overwhelming levels of anxiety but who did not want her peers to know she was neurodiverse.  We put sensory strategies in place to help her maintain calm during the day. I could continue this list, but you get the point. Girls on the autistic spectrum need understanding and support despite their ability to fly under the radar.

Personal Experience

I often do not speak about being autistic myself.  I do not want to detract from the experience of people who lead more challenged lives, but I have been encouraged by those people, and their families to speak more. If society understands more about the incredible diversity within the spectrum that will help ensure everyone is recognized as an individual, not judged by a stereotype associated with the diagnosis.

I worry about mentioning my autism because I want to be judged for my professional skills, for who I am, not for who people will think I am after I say I am autistic.  But not mentioning it does nothing to change attitudes either.

I resent having to tell people I am autistic now, after three decades spent mastering the art of masking to a point where now I believe that if you met me you wouldn’t know, it feels rather like shooting yourself in the foot to then reveal the very thing you’ve worked so hard to hide.

But yes: I am autistic.  Now I’ve said it you’ll notice my poor eye contact, my slightly off kilter turn in conversation. I was the child who stood in the playground and flapped. The one who only ate beige (and tomato sauce). I was the baby who refused to be cuddled.

When I was seven I kept a diary for a year, each day I drew a picture, not of what I had done that day but of what I would have done had I had a friend. All around me I could see people making friends, but I did not know how to do it. I was seventeen before I first made a friend by myself.

I am yet to run an event specifically looking at supporting girls on the spectrum, I am still getting used to being “out” myself. But I lace insights about life on the spectrum through my other events and am always open to conversations on social media.

                                                    Books by Jo Grace 

Further reading and articles from Jo:

On Ambitious and Inclusive Sensory Story Telling I talk about how sensory stories can support people to make friendships and be a part of a community, and how they can help people to cope with new environments and change. [My book Sensory Stories for Children and Teens covers similar ground].

On Explore the Impact the Senses have on Behaviour I look at situations of sensory overload and sensory disturbance that are commonly experienced by people with autism.

On Develop Your Sensory Lexiconary and The Super Sensory Lexiconary I look at sensory experiences that can be used to support people with autism in feeling calm and safe, and explore why some experiences more than others may cause distress. [My book Sensory-being for Sensory Beings covers similar ground].

The other event I run which will be of interest to those who support people with complex disabilities and autism is Sensory Engagement for Mental Well Being.

On any of my events you can expect to meet someone utterly thrilled to be being allowed to talk about their special interest to a room full of people interested in the same thing. Autistic paradise!

Please feel free to connect with me via social media and to find out more about what I do at www.TheSensoryProjects.co.uk

 

Autism and behaviour in secondary school

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Female teacher telling off a female student by some lockers in a corridor.

I’ve been reluctant to wade into the sea of behaviour debate I see in the news and on social media at the moment, but I would like to share some insights from my practice about how autistic students in secondary school use behaviour to communicate that something is wrong.  I want to show you how we might go about supporting them so that the real issues are dealt with and behaviour improves.

I do think it is important in secondary classrooms for all students to behave in a manner that enables the lesson to continue and the content and learning to happen.  It is necessary for schools to have a clear behaviour policy and a system of sanctions that are consistently used by all staff.   This provides clear expectations and clarity of procedure.

However, in my many years of experience supporting autistic young people in secondary schools I have learned that negative behaviours always have a reason, and that we can mostly be sure that the autistic student is struggling to communicate what the problem is.  They may get angry, obstinate, oppositional, withdrawn, self-harm or disruptive as a reaction to the frustration and stress of not being able to communicate and sort out a problem.  Sometimes they cannot understand what the problem is they are having.   Sometimes they are trying so hard to be good that the pressure causes them to have meltdown’s, usually at home.  We need to listen when parents tell us that – it’s a great clue for us that the student is stressed at school.

The key is to find out what may be causing the behaviour and deal with the cause, not the symptoms.  This is where adhering to a school policy of sanctions is at best non-effective, but it’s usually worse,  sanctions add to the stress and problems for the child and so the behaviour difficulties increase.

teacher helping a student in class

What to look for

These are the issues we have often uncovered when a child’s behaviour seems to become a problem in secondary school (and especially when there are sudden changes in behaviour)

  • Outside factors  Lack of sleep is a big factor, as teenage sleep patterns are all over the place.  However, many autistic young people have poor sleep patterns and may have done most of their lives.  Lack of sleep on top of puberty and growing hormones can cause an autistic student to display extreme tiredness, anger and signs of depression which can impact on classroom behaviour.  Sometimes it is family relationships or events that are the root of the distress they are displaying.  Other things like a child that may be experiencing bullying or abuse and be unable to communicate to someone about it, because they are autistic and cannot find the way to communicate, or because they are being threatened or manipulated to stay silent.
  • Bullying.  Since working in secondary schools I never cease to be surprised at the levels of teasing and ‘banter’ between students.  It can start as soon as they begin year 7.  It can look like pack animals seeking out the weak and isolated prey.   Any difference or simple ‘mistake’, social difference or physical feature seems to be pointed out and picked on.   This is a symptom of our society and some would argue that it has always been part of school and growing up.   But autistic students, with a social understanding difference are easy ‘prey’ and easily confused by all this ‘banter’.   Friendship groups change and establish clear boundaries, often leaving out and isolating autistic students.   Those who had friends at primary school become confused when those friends find other friends and don’t want to hang around with them any more.   Being teased and not understanding the sarcasm or jokes directed at you can lead to a lot of stress.   Autistic students are not stupid, they know when others are being cruel even if they don’t understand the phrases and words they use.   What they do understand is that people are picking on them and being unkind.    Sometimes the other students are just doing the same as everyone else and don’t mean to hurt the autistic student particularly.  Sometimes there is misunderstandings.   But these are important and real dilemmas for autistic students that can show in their classroom behaviours.  I’ve known students who shout out, try to make jokes, do outrageous things to get the attention and approval of their peers.  But then there are students who pretend to be friends with the autistic student and egg them on to be disruptive.  Then they sit back and enjoy the autistic student getting into trouble.  This cruelty happens too often.  Schools who punish their behaviour without providing support to develop healthy friendships and recognise the early signs of bullying, are compounding the autistic student’s isolation and anxiety.
  • Workload. The most academically able autistic students are vulnerable to workload stress when they go to secondary school.  It’s not that they are less able but often the pace, the switching attention between ideas, content and then the next lesson to another subject, challenges them.  Autism often means that the student is dealing with sensory overload, anxiety about getting things right, struggling to make sense of ambiguous instructions and organisational challenges on top of listening to the teacher, taking in the learning and understanding the expectations of the task.   I am amazed at my students who tell me that this is how it is for them and yet their teachers don’t realise because they seem to hold it together in class.   One of my students told me that his hearing is so sensitive that he has to spend so much energy trying to ignore every scrape, sniff, cough, traffic sound and everything else he can hear, that concentrating on the lesson is really hard.  He manages it but if someone next to him makes a loud noise or scrapes their chair on the floor he shouts at them in his shock and distress.  And then it is him who gets told off (another assault on his hypersensitive hearing).
  • Homework.   For so many autistic students, homework is torture.  For many the line between home and school is a clear one so to do school work at home doesn’t make sense.   My autistic students often tell me they don’t understand the instructions, they can’t hear clearly when writing them down or the teacher doesn’t give enough time to do so, and when they get home they are so overloaded from the school day they have used up all their energy and cannot function to do homework.  (See spoon theory – here). Many autistic students want to do well and work so hard to mask their difficulties but failing at homework regularly compounds stress and anxiety and can lead to oppositional or withdrawn behaviours.  There are lots of ways to make homework more successful. See my post about that.
  • Anxiety.  Sensory issues cause a lot of anxiety along with worrying about friendships, tests, homework, being punished for getting something wrong and many other things that we often tell students not to worry about. However, worrying is so common in my autistic students that it is the first thing I investigate when behaviour is mentioned.   I also investigate what they are worried about when they are seeming to be good and have it all together, because being autistic in a secondary school is not easy.   Anxiety grows with puberty and often my students become much more anxious at the beginning of Year 10 when GCSE pressures really become an issue and the fear of not knowing what they might do when they leave school is added.  Anxiety is not part of the autism diagnosis but I rarely meet an autistic teenager who isn’t anxious.  This is where I find Emotion Works a great resource to explore their anxieties and enable us to provide the right support that they need.   Even anxiety about receiving sanctions can lead to disruptive behaviour – not because they want a sanction but because they are so worried that they will, they cannot concentrate, become angry easily and cannot cope in class.

All I am asking is that if an autistic student’s behaviour is deteriorating, causing them to receive sanctions regularly, please do not assume the student is being difficult “on purpose”.  There is always a reason and most of the time there is anxiety, stress and a difficulty they cannot communicate in any other way.  We can work with the student and parents to find out the root cause and then support that.  Then we can meet their autism needs.  It might be tempting to blame parents, too much screen time or puberty. In my experience, the root is nearly always something at school.  We can do something about it if we understand what that may be.  Even if it is something outside school, such as family break up for example, there is a lot we can do to make things less stressful at school and support the student to calmer behaviour.  I can’t give you an extensive list of what to do because every child will need a different solution.    But here are some examples.

So what do we do?

Child A in Year 10 who had previously behaved well, started to walk around the school in the opposite direction to the one way system, and shouting at teachers who reprimanded them.  The school discipline policy was implemented every time they did and they were given school time detentions after a number of warnings.  They didn’t attend the detentions and this was flagged up by the senior leadership team and was referred to the SEND department for investigation.   Their parents were called in for a meeting.   At this point, I was asked to work with them for a session and found out that at the root of the behaviour was an issue the student had become very upset about and felt that no-one was listening.   It also transpired that they didn’t go to detentions because they had no idea what a detention was and what they would do at the detention.   They thought they would be kept at school all night and not be allowed home at all.

Once we understood, we could help this autistic student.   We looked at the issue they were upset about, mapping out all the information they could tell me about it.  I was able to add some information to the mind map to show them why the teacher had made the decision they didn’t like, and that they could still benefit from the course of action that they were now having to take.  Secondly, we discussed the school behaviour policy and they agreed that it was fair to receive a sanction for deliberately breaking the rules.  All we had to do was write a social story to explain this and what would happen in a detention, how long they would have to be there for, and when it would finish.  They agreed to do one detention (supported by the staff) and then the matter would be finished.  The student also requested a report card (usually used for behaviour monitoring) so that they could monitor each lesson.   This card had positive targets for them to achieve and included the support they could ask for in lessons.  This was very successful and helped the student and the teachers to establish a very consistent approach.  The student behaved in the way they did because they were confused, upset and angry.  The support we put in place explained things properly and made a plan they could accept and carry out.   No further sanctions were needed.

Child B was in tops sets and seemed to cope well at the beginning of Year 7.  However, after the Easter break they became oppositional in some lessons and started to run away from school.  Every time a teacher tried to implement a sanction from the school behaviour policy they would complain loudly and argue with them, occasionally throwing something across the room in the direction of a teacher.  They had a ‘time out’ card which worked in some lessons, but some teachers refused to let them use it.  They were often late to class, spent lessons with their head on the desk and missed more and more of their learning.  Homework wasn’t completed and parents reported that they were having meltdowns after school most nights.  At first the school implemented its behaviour policies and sanctioned the student with detentions, but that is when they started to abscond from school.  When we investigated what was worrying the student we found out that because they were bright, it had been assumed they would be fine in secondary school.In reality, they were struggling with the more abstract content in some lessons, particularly English.  They had significant sensory needs which they’d managed to mask in primary school, but was now struggling to manage in the noisy, busy corridors and break times at secondary school.   This student was trying to function with an extremely high level of anxiety each day and their meltdowns at home were a symptom of their distress and inability to cope.

With parents, we arranged a reduced timetable of one subject for a term, which would then be reviewed.  They were taken out of two assemblies and one lesson a week and this time was spent with a TA to go over their workload, homework and explain anything they were unsure of.  The SENCO and student put together a one page profile to give to all their teachers which reminded them of his autism and the support that would help him in class.  They were reminded to make sure they could use their time out card and to explain things in smaller chunks to the student, checking that they understood.

Summary

Secondary schools have fewer TAs and tight budgets but understanding the behaviour and communication of autistic students is vital.  There are more complex students than these examples, but Emma and I have spent many years working with secondary schools to support complex needs and seen students get through each school year and be supported in the challenges they face.  Occasionally we have supported a move to a more specialist autism provision for the sake of the student, and at other times we have prevented exclusions.  You may need outside help, but listening to the student, acting upon their concerns and supporting their needs is achievable in most cases.

This year we supported with our schools a number of students doing their GCSEs.  The schools (especially led by the SEND departments) have adapted and supported the students from their shaky early years in year 7 and 8, through the puberty issues and relationships challenges and been there for them when things have got tough and stressful.   There is nothing better than seeing those students sit their GCSEs and knowing you have enabled them to survive and even sometimes thrive because you didn’t see behaviour as something to punish but as a call for help that you could answer.

I’m not saying it is easy.   I work with schools who put so much effort into supporting their autistic students and keep them going through the times that their behaviour shows us that they are not coping or trying to deal with a problem or worry.   These schools read the behaviour as communication and try to ‘listen’ to what the student is communicating.   Sometimes it can be dealt with quickly, other times it can be a continuous support package throughout the whole of secondary school.   This post is an attempt to share that and show the necessity and positives of being flexible when ‘reading’ behaviour in autistic students.