Mind the Gap!
What can you do to help your child between them being referred to be tested for an Autism Spectrum Condition and receiving a diagnosis?
Recently, I have spoken to A LOT of parents who believe their child has an Autism Spectrum Condition (ASC). They have been to their GP who has referred them on (if they are lucky) to an assessment clinic. But then (and this very much depends on the services where you live) begins the wait.
You wait and wait. For some people the wait can be years, not months. And in the meantime, your child is struggling at school. School could be happy to help, but don’t know what to do exactly, and they can’t call in any external support, because there is no ‘magic piece of paper’ with a diagnosis written on it.
So… what kind of help could be put in place for your child at school? The kind that doesn’t cost much, if anything at all? That doesn’t take up all the teachers time, so they are willing to implement some of the suggestions.
The good news is, good autism practice is good classroom practice.
I feel like a story teller at this point… but before I begin, please be aware this is only general advice that MAY work for SOME children on the spectrum. Parents, you know your child best, some of these strategies might jump out at you as things to try, while others leave you cold. This post is intended to collect together some strategies that work for many children who have an autism spectrum condition, but they also need to be specific for each child. Speaking to to school SENCO (Special Educational Needs Co-ordinator) or class teacher to explain why you would like to try some of these strategies should be a good way to begin. The Autism Education Trust produce a helpful guide ‘Working Together with your Child’s School’ which is worth reading before you approach school in the first place.
A visual timetable can be used for the whole class to provide structure to the day. Ideally it is set up by the teacher at the end of each day, ready for the start of the new day. Or a child can have an individual visual timetable. These can be as simple as a now/next board
or show a whole morning/ afternoon’s activities. If using an individual timetable, it is important to include some time for preferred activities at regular intervals. For example, if a child really hates assemblies, but loves ICT, allow 15 minutes on the computer immediately after each assembly. Or if handwriting practise is a problem, use a sand timer to measure 10 minutes, then put ‘snack time’ or ‘outdoor play’ or ‘free/choose time’ on the timetable so there is something to work towards.
Next to the visual timetable should be a small pouch with the word/symbol for finished on. When an activity is over, the card that represents the activity can be put in the finished pouch. This is the cue to select the next activity from the timetable.
Unstructured time can be difficult for children with an autism spectrum condition. Simply knowing when unstructured time starts and ends can be a help. A child could be given a 15 minute sand-timer to allow a visual representation of how long a play time might last.
Some children might prefer to stay in the classroom and use a computer rather than the noise and busyness of the playground, or be given small tasks to complete, like putting letters in bookbags or delivering letters to the classrooms from the school office. Some schools have a staffed quiet room that can be used to do more structured activities. Perhaps schools could run an art club, choir or chess club at lunchtimes.
Even outdoors, some games can be organised and therefore structured. Outside staff could co-ordinate a game of rounders, or hopskotch. Bringing a skipping rope, some colouring or a book to read from home can be enough for some children so they have something to do while avoiding the general chaos of the playground.
Coping With Change
There is so much change that can happen in schools, but things can be done to combat the anxiety caused by these changes.
As part of the visual timetable, staff could have their photographs on a small wall chart. If they are away because of illness or on a training course, a small ‘x’ shape could be blu-tac’d on to the photo to represent them being away. Any supply staff could add their photo to the display temporarily.
For school excursions, including swimming lessons, a social story can be produced in advance with lots of photographs. This could incude photos of places you will visit, staff that will be there, who they will sit with on the coach, where you will eat packed lunch, times that things will happen. These booklets can be taken along on the trip to be referred back to.
End of terms, especially at Christmas, can be times when the usual school routine changes and things become noisier and more chaotic. Lessons are dropped for play practises. Some of these changes can be represented on a visual timetable, using the cards for ‘play practise’ and ‘carol concert’ ‘class party’ etc. Staff can also be prepared for behaviour to get a little worse, and if they are aware, they may be able to allow the child more quiet time or choosing time to help them cope.
Changing class at the start of every school year can cause huge upset and children can take a long time to settle in a new class.
Parents can help by jotting down a short list of things that will help the new teacher learn about your child (give it to them before the summer break), include things like likes and dislikes, triggers for meltdowns, sensory issues and a couple of things that might help calm your child. If it is brief and to the point, teachers and support staff are likely to have time to read it.
School can help by compiling a booklet about their new class. The child can read this in the last week of the holidays to help prepare for the return to school. It should contain photos of the new teachers and support staff, the new classroom, cloakroom and toilets. Also include photos of things that will be the same, like the playground and dinner hall.
Transition to secondary school is more difficult, but I really recommend this book. It contains sections to fill in about homework expectations, what to do if you get lost, who to ask for help etc. It’s by KI Al Ghani and is called ‘Making the Move’.
Friendships can be tricky for those on the Autistic Spectrum. Some people would rather be alone while others would like friendships but don’t have the skills to make/keep friends. This link to The Autism Discussion Page talks beautifully about how peer mentors can help.
Circle of friends is becoming more widely used in UK mainstream schools to help a child with an autism spectrum condition to develop their social and communication skills.
Peer Awareness can be valuable too, children are often very accepting and accomodating, once they know why there are differences.
Woodfers World is a free downloadable resource. It fits perfectly in the ‘circle time’ or PSHE time for your school and is pre-planned for the teacher. It is an anti-bullying resource, based around autism, but doesn’t mention autism at all. It only celebrates difference.
Woodfer’s World is a teaching resource aimed at primary school children aged 7-8. It has been designed to be a core part of a school’s work to promote inclusion, supporting teachers to create a truly inclusive environment, where everyone feels they belong and children are at less risk of bullying. All the stories have accompanying resources to download, including handouts, reflective questions, and workshop materials.
For older children there is a similar pack called 100% Awesomes. This does cost, but only £15. It does mention autism though, so this may be trickier to use without a diagnosis.
‘The 100% Awesomes’ is the new comic book themed peer awareness teaching resource. It features a set of superhero characters created by the team behind the Doctor Who Magazine. The lesson plan, for pupils in years five to seven in mainstream schools, is about celebrating difference and focuses on utilising people’s strengths and supporting their weaknesses.
There is no wonder that children sometimes have a meltdown with all the sensory and other challenges in the school environment. This can be very scary for the child, as well as frightening for other children and staff. This picture is from the Autism Discussion page
Using a calm-down kit can be useful. In essence, this is a small box filled with useful calming items which the child can take somewhere quiet to help him/her self calm down. What you put in the box depends on the sensory needs of the child, but always put in a bottle of water and a small snack (like a packet of raisins). Stress at meltdown level can cause genuine thirst and hunger. I keep a square of bubble wrap, a piece of soft silk, some calming scent (lavender room spray), an eye mask to block out light and a set of earphones and an mp3 player to block out noise. I also add a light up ball, some stress balls and a beanbag.
Even better than dealing with a meltdown after it has happened, if a child is able to tell he/she is becoming overwhelmed, a pass-out system can be useful. A child can give a small ticket to the teacher who then tells the child they can go outside. This is a plan that is agreed beforehand with the teacher and child. The child may go somewhere quiet for 10 minutes with a timer, to read or listen to some music on an MP3 player. The pass out does not allow work to be avoided, the work must still be completed on coming back into the classroom. If a child is older, or self-conscious about asking for help in class, a similar system can be used. A green band worn on the wrist means ‘I am ok to complete this work myself’ a red band means ‘I need some help’.
People on the spectrum who have sensory integration difficulties can struggle to process everyday sensory information. Dealing with all this information can cause stress or anxiety and can be a huge issue for ASC children in schools. Some people with Autism Spectrum Conditions report feeling actual physical pain from sensory overload. This can result in challenging behaviour.
There are seven senses. Five that we hear about most often (Touch, Smell, Sight, Hearing and Taste) and also Vestibular (sense of balance) and Proprioception (a sense of where your body is in space).
Senses can be Hyper (over or high sensitivity) or Hypo (low or under sensitive) or even both. For example, one child (that I know very well and who is sat next to me as I type this!) is both hyper- and hypo- sensitive to touch. She can fall over and really bump herself hard, which doesn’t hurt or possibly even feels good (think deep pressure massage) She often asks for a foot rub when she’s stressed. On the other hand, a light touch, hair being brushed (however gently) and fingernails being trimmed, really do cause considerable pain. When she is having a more difficult day, her senses are intensified, so she craves more deep pressure while light touch hurts even more.
Being in school, children touch each other A LOT! They bump elbows at tables, knock into each other in the cloakroom, hold hands, during games, when lining up, at high school, walking between lessons in crowded corridors, the list is endless. If you are a sensory seeker (hypo-sensitive), you may be seen as a rough child, one that doesn’t know when to be gentle, the one who is always bashing into people.
If hyper-sensitive, the smallest touch could be tortuous. If this is the case, these children should be allowed to line up at the start/end of a line (perhaps being made a door monitor), they could be allowed to sit at the edge/the back of a crowd of children so they can make more space around themselves. They could be allowed to arrive at/leave school move between lessons or go into a cloakroom a few minutes before everyone else, to avoid the crush.
Sensitivity to clothes is another common problem that falls under ‘touch’. School uniform can be uncomfortable, stiff collars, blazers, ties and trousers with creases can all be incredibly uncomfortable. If your child is sensitive to labels in clothes, I am sure you’ve already cut them out, but if schools have a ridgid uniform policy it can cause real problems. Could you imagine learning anything, if you felt like you were being strangled for the whole school day (by a collar and tie)? Schools should be able to make ‘reasonable adjustments’ for these kind of issues. Perhaps a clip on tie or a polo shirt instead of a collared shirt.
Every time I am touched it hurts; it feels like fire running through my body. G. Gillingham
Children who are hypersensitive to touch may also not like wearing shoes and/or socks or any piece of clothing that is restrictive. Children could perhaps be allowed to remove their shoes while seated at a desk, but put them on to move around the classroom or school.
Weighted lap pads can help children feel comfortable while sitting at a desk.
You probably won’t realise, but there are lots of smells in school. The smell of cleaning products, the smell of people, especially if staff are wearing strong perfume or aftershave. There is the smell in the toilet blocks (air freshners, bleach, urine etc). There is the smell of craft equipment (paint, glue etc). Some children are so sensitive to the smell of school dinners cooking that, even with closed doors, they can’t concentrate in the classroom, let alone be able to walk into the lunch hall to actually eat their own food.
If children are hyposensitive to smell, they may not notice extreme odours (even including their own body odour). They may lick or sniff items to get a better sense of what they are.
If hypersensitive, smells can be totally overpowering. This could cause toileting accidents because of a refusal to use the bathrooms. Children may take an instant dislike to a perfectly lovely person because of the smell of their perfume! Staff in schools should be aware so as not to wear perfumes/aftershave, to keep a window open slightly so that the smell of school dinners cooking can escape. Children could be permitted to use the adult bathrooms or eat their lunch outside or in a classroom instead of in the lunch hall/canteen.
If a child has under-sensitive (hypo) sight, objects can appear dark or lose some features (good lighting can help here) or they may have poor depth perception, which can cause clumsiness or problems in throwing and catching games.
For over-sensitive (hyper) sight, images can appear fragmented or objects can seem to jump around.
In school, sitting children by a window or by vertical blinds can cause huge distraction, so be mindful where they are seated in the classroom. Dimmer lights can help and use less reflective things around the classroom. For example, normal laminating pouches can reflect the light when they are used to laminate sections of a wall display. Teachers could use matt laminating pouches instead. These small changes can make all the difference. A huge issue for people with hyper-sensitive sight, are neon light tubes. Many people with autism report that they can see each and every flicker of these bulbs (in the same was that neurotypical people notice the bulbs are starting to wear out because the flicker becomes obvious). These tubes are often used in schools. Ideally they should be replaced by other lighting but if that’s not possible, the tubes should be changed regularly.
Some people with autism spectrum conditions have a hypo sensitive sense of taste, which can cause Pica (eating non-food objects). There are many reasons for Pica, including mineral deficiencies, but it can be be because the child gets pleasurable sensory feedback from ‘tasting’ such objects. This can be a safeguarding issue, if a child is likely to eat, for example, stones, blu-tac, paperclips, discarded staples or drawing pins.
Children with hyper-sensitive taste may have a very restricted diet, because they find flavours too strong or that textures cause discomfort. Schools may have to be understanding and non-judgemental about the picky eater who never eats his/her school lunch or the child who brings only plain bread to school in his/her lunchbox. Better yet, ask the parents advice, it is them who give the child most of their meals, it is likely they will have the best ideas how to get the child to eat or try something new.
Being hypo-sensitive to sound may cause a child on the spectrum to bang doors and objects. If this is the case, perhaps a child could be permitted to bang and make a noise at various intervals during the day, but not when a teacher is talking to the class. They may not hear certain sounds or voices, instructions may need to be written or in pictures.
Being hyper-sensitive to sound can make sounds muddled and distorted or magnified. Hyper-sensitive children may be unable to filter out any noise, so they can be especially sensitive to background noise like passing traffic and can hear various parts of all conversations happening in the classroom at once. This can lead to a difficulty in concentrating. Children may need to work in a quiet area, perhaps a workstation slightly away from or just outside the main classroom. This can also cause difficulties in dinner halls and crowded places, children should be allowed to at their lunch somewhere quieter or go into the canteen before or after everyone else.
Computers, fans, overhead projectors and electric whiteboards can all cause an electrical hum/buzz which adds to background noise. If these items are not being used in a classroom, they should be turned off, not left running or on standby. (Good for reducing school’s electricity bills too!)
Is the sense of where your body is in space. Can you imagine closing your eyes and not knowing where your feet or hands are anymore, because you can’t see them? If hypo-sensitive, these children are likely to spin, swing or rock on their chair to get some sensory input.
A good solution in school is to allow movement breaks where a child can carry something heavy (get the bags of PE equipment out of the cupboard, or pass reams of paper to stack in the photocopier). They can also push against the wall with their hands or bounce on a trampoline. This kind of proprioceptive input is very calming.
If a child rocks on his/her chair, put a theraband loop around the legs of the chair for the child to stretch with his/her legs. Or you can buy reasonably cheaply, wobble cushions for fidgeting on while seated. Chewing gum or chewy jewellery can also help. Sitting still in an assembly on the floor could cause proprioceptive problems, the child could sit on a chair with a back or a beanbag to give that extra support.
Being hypersensitive can cause travel sickness during school trips or can cause difficulty stopping quickly or with sports activities where controlled movements are needed. It is better to stick to activities where feet can be on the ground and heads can be upright.
The vestibular sense is the sense of balance.
Children who are hypo-sensitive may lose friends because they can’t judge personal space and stand too close to people. They may bump into other children and find it hard to navigate rooms and avoid obstructions. Keep walkways and entrance ways wide and clear.
Children who are hyper-sensitive might need extra help typing shoelaces or with buttons, staff should help, not criticise. They may turn their whole body to look at something.
Occupational therapists may need to be involved to help tackle problems with vestibular and proprioceptive senses. Your GP or Senco will know how to refer to an Occupational Therapist.
There is plenty of information here and I really hope that some of it is useful and helpful for you and your children. It’s the kind of article I wish that I had been able to read when I first started on our journey. What helps your child in school? What has been your experience of support and interventions while you wait for diagnosis? Have schools been helpful or not interested? Please do add your comments and advice too.