ISSUE 15 / DECEMBER 2021
IN THIS ISSUE... AUTISM: WHY SO SENSORY? BUILDING DESIGN – SUPPORTING INDEPENDENCE ALTERNATIVE & AUGMENTATIVE COMMUNICATION AUTISM, TRANSITIONING & EHCPs SLEEP SUPPORT
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Welcome!
WELCOME TO OUR LATEST ISSUE
I
can’t believe it’s been three years since the launch of Kidz to Adultz magazine in November 2018. Since then, we have published fifteen magazines, distributing more than 780,000 copies directly to our network – who then share it again several times over! Well, I have another great issue for you this month. We have the story of eight-year-old Archer and his buddy dog Nancy, an expert explanation of how building design can help or hinder independent living and an introduction to Alternative and Augmentative Communication (AAC) from a mother and speech and language therapist. We also have the experience of Makai and how an educational health care plan helped him transition to secondary school, an explanation of autism as sensory experience, and the story of Designability’s free Wizzybug loan scheme. It is great to keep in touch with you through the magazine, but there is nothing better than seeing you in person. If you can, come along to one of the Kidz to Adultz exhibitions in 2022 – it will be fantastic to see you! As I write this, the snow is falling outside, the weather is freezing and I can see my neighbour putting up their Christmas decorations. For me, this time of year is magical, especially seeing how much the children enjoy it. I want to take this opportunity to wish you all a very happy Christmas and prosperous New Year.
CONTENTS... Buddy dog helps eight year old with blindness and autism to thrive....................4 Building design, function and inclusivity – supporting independence.................... 10 Mummy vs AAC................. 13 It was great to be back!.... 19 Autism, transitioning and the importance of an EHCP.......................... 23 Autism: why so sensory?............................. 26 Designability – Innovation at its best!.......................... 32 Sleep support for families............................... 34
Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions Disabled Living #kidztoadultz
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Buddy dog HELPS EIGHT YEAR OLD
WITH AUTISM AND BLINDNESS TO THRIVE EIGHT-YEAR-OLD ARCHER WAS PARTNERED WITH BUDDY DOG NANCY IN MAY 2020. SINCE THEN, SHE HAS BECOME PART OF THE FAMILY. NANCY HAS HELPED ARCHER TO THRIVE, GIVEN HIM CONFIDENCE, REDUCED HIS ANXIETY, HELPED HIM TO SHOW EMPATHY AND SHE HAS HELPED HIS MUM LAURA, A SINGLE PARENT TOO. 4
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rcher is registered blind and has a diagnosis of autism. His sight loss is due to several eye conditions, optic nerve hypoplasia, alternating divergent squint and ptosis. He also has hypermobility and anxiety. The Buddy Dog Service, provided by the Guide Dogs organisation, brings a new friend into the lives of children with sight loss. By helping to develop their self-confidence, improve relationships and build a greater sense of trust, these dogs can have a hugely positive effect on your child’s wellbeing – and your family too. Archer’s mum Laura says, “I knew there was something wrong with Archer’s sight since he was a very young baby. I kept raising it with health visitors, but it was only after getting a second opinion at Birmingham Children’s Hospital that we got a diagnosis.” “I knew about Buddy Dogs,” Laura says. “It had always been on my radar. I applied in between lockdowns, and we were able to complete some training sessions before Nancy came to us in May 2020. It took a while as they
needed to find the right dog, but Nancy is amazing.” “Life is much happier with Nancy – she gives amazing cuddles. She is always with Archer, and although she doesn’t have the privileges of an assistance dog, we have asked permission and she has come to most places with us except for swimming.” Nancy has a positive influence on Archer regarding his disability. Laura says, “Archer always felt ‘different’ and hated the term registered blind, but now he can talk about Nancy, and this has changed his perception.” At home if Archer gets frustrated, Nancy knows exactly what to do. She will comfort Archer when he is stressed or just lay quietly if Archer is having a meltdown. She gives the best cuddles to Archer and Laura. Archer shows empathy since having Nancy. This has come from taking responsibility for caring, feeding, and grooming Nancy. Laura said, “We are a family of three now. At Christmas, the first thing that Archer wanted on his list was a bone for Nancy. She is the first thing he thinks of.”
Walks used to be boring or frustrating for Archer with sight loss, but Nancy has made these fun because he is interested in what she is doing, and he is delighted when she jumps in a puddle. Getting a buddy dog has helped the whole family – not just Archer. Laura says, “as a single parent of a child with special educational needs it can be very isolating. Nancy gives me emotional support with her huge furry cuddles and gets me out and about meeting other dog walkers daily. Nancy is always there ready to give cuddles when Archer returns home from school.” Buddy dog Nancy has certainly bought a lot of happiness to the family home since her arrival just over a year ago and she will continue to help Archer thrive as he grows up, offering the companionship and emotional support that he needs. For more information on the Buddy Dog service and how they may help a child with sight loss, visit: www.guidedogs.org.uk/gettingsupport/help-for-children-andfamilies/buddy-dogs-for-children
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BUILDING DESIGN, FUNCTION AND INCLUSIVITY – SUPPORTING
independence
THE HOME SHOULD BE A PLACE OF SAFETY, JOY, PLEASURE, AND COMFORT, NOT SOMEWHERE THAT THE RESIDENT CONSIDERS TASKS TO BE ARDUOUS OR STRESSFUL. AT THE SAME TIME, WORKPLACES AND PLACES OF LEISURE SHOULD BE SUPPORTING ALL MEMBERS OF THE COMMUNITY TO ENGAGE IN MEANINGFUL, PRODUCTIVE ACTIVITY. 10
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e all now know, given spells of social isolation, how it feels to be deprived of access to the things we enjoy and the impact it has on both our physical and mental health. At The OT Service we believe strongly that the ability to engage in meaningful activity is crucial for a person’s long-term health and well-being. This means that not only should design support safe and unhindered access to critical space within a home, such as a bathroom, but support aspirations and what might be considered that person’s normal daily routines or skill development. The process of designing a space that accurately reflects and represents the needs of its users or residents can be a complex one, particularly given the diversity of people who may benefit from something designed ‘inclusively’. Let’s consider what the term inclusivity means: ‘The practice or policy of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized, such as those having physical or mental disabilities or belonging to other minority groups.’ (Oxford English Dictionary). Traditionally, the focus of inclusive design has been on wheelchair access, whether that be within commercial premises, for example shopping centres and office buildings, or homes where the focus is on turning circles, utility heights and doorway widths amongst other design features. As complex as these designs can be they are not arbitrary. Architects, builders, and designers are legally instructed under 2010’s building regulations to ensure that specific needs are met for safety, functionality, and inclusivity. The building regulations provide several supplementary documents, including a document called Approved Doc M which cover “dwellings (part 1)” and “buildings other than dwellings.” The approved documents set out
what would ordinarily be accepted as reasonable provision for compliance. The development of Approved Doc M has led to other important design resources, such as Wheelchair Housing Design Guide published by Habinteg which readers may find more accessible if considering their own adaptations. The challenge with recommending minimum standards however it that as a community’s body measurements change, so does the equipment they use. Similarly, with technological advances the marketplace changes significantly from year to year. A good example of this is the specialist wheelchair industry: how long will minimum standards set in 2010 and amended in 2016 remain suitable for? This question is raised by a likely future where people have a higher average BMI, and are more likely to use indoor/outdoor wheelchairs with mid-wheel drive and tilt-in-space systems. We stand by the premise that people are not disabled, but environments can be disabling, and are passionate about helping to tip the balance back in favour of the person, regardless of their needs. For this reason, we continue to engage in research and training to increase the understanding about inclusivity and design, from wheelchair accessible design to use of pushchairs in public toilets, from use of lighting and signage for someone with a visual impairment to dementia, bariatrics, and everything in-between. We are presently working with the Ministry of Housing, Communities and Local Government to look at revising space standards in the Building Regulations for adults and children who use
mobility equipment. We recently attended Kidz to Adultz North in Liverpool taking measurements of attendees to inform these changes. The more people who participate in our research, the better the results, so please do get in touch. Kate Sheehan, Director and Occupational Therapist, The OT Service – www.theotservice.co.uk
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Mummy vs AAC
I AM JO, THE MOTHER OF SEVEN-YEAR-OLD LUCY, AND WE HAVE WORKED HARD THROUGHOUT HER LIFE TO SUPPORT HER COMMUNICATION SKILLS. LUCY HAS A RARE CONDITION CALLED EMANUEL SYNDROME. ALL PEOPLE WITH ES HAVE SOME DEGREE OF LEARNING DISABILITY AND PHYSICAL DISABILITY, AND AROUND 80% DO NOT DEVELOP VERBAL SPEECH. HERE, I WILL SHARE ONE OF MY BIGGEST PASSIONS: COMMUNICATION USING ALTERNATIVE AND AUGMENTATIVE COMMUNICATION (AAC). 13
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he term AAC encompasses many aspects of communication. In its broadest sense, it can cover things like gesture and writing, as well as more specialised forms of communication such as Makaton signing. Most commonly when people talk about AAC they are referring the use of symbols or written words by the person communicating, whether using paper or an electronic system; most people who use AAC have a range of tools available to help. The method enhances speech development and does not delay or prevent it. AAC can support or replace verbal speech, which are respectively referred to as augmented or alternative approaches. I am lucky to have spent my working life so far as a Speech and Language Therapist. I do not work in AAC myself, but through friends and professional connections I learned more about it and became a supporter of the method. In turn I now enjoy sharing my knowledge and experiences with others. AAC is a long game, as developing the communication with a child with learning disabilities takes time. This inspired the name of my blog, Mummy vs AAC, because I love the approach but have also struggled with motivation at times. I kept focussed with the help of sharing and writing about my experiences, and this was particularly helpful during periods when I felt disheartened. Lucy communicates in many different ways. You can tell if she’s happy or sad by her facial expression, and she’ll reach for things and people she wants – and she is very clear about what doesn’t want! Lucy really uses what she has available to her. We wanted to broaden her opportunity to communicate so we introduced Boardmaker™ picture communication symbols, and in November 2019 we began using an iPad with communication software to help Lucy’s communication even more. There are a wide range of resources, apps and software
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available, so it is important to explore what is best for your child. We decided to use the Grid app by Smartbox on Lucy’s iPad. When deciding on an app, we found it to be important that it has access to what is known as ‘core vocabulary’. Core vocabulary makes it possible to model, learn and use words across different situations. To understand this concept, imagine two different sets of words for playing with bubbles. One set (set A) contains the words more, stop, look. The other set (set B) contains the words bubbles, blow, pop. Set B is only useful when you’re playing with bubbles but set A can be used for bubbles, building, reading, splashing in the bath or mealtimes. Lucy now always has some of this core vocabulary on anything she’s using. That means she is learning a small number of high impact words she can use in numerous situations
and for lots of reasons. She uses this core vocabulary not only to request, but also to reject, comment and more. Lucy’s Emanual syndrome means that learning takes a long time, and she needs to see the same word or picture several times over to be able to learn them. That’s why we use an approach called ‘modelling’ on her AAC. Modelling involves demonstrating the use of chosen communication system (either on paper or device) when talking, and showing Lucy where the words are and what they mean. For example, if Lucy is pushing something away, I will point to the words not and want, while saying “Oh, you do not want that.” I love using modelling to support Lucy. Seeing and hearing the language in use gives her the opportunity to learn to use her AAC in the same way we learn to use
spoken language. Modelling also makes me feel like I’m following her lead. We talk about what she’s interested in; it doesn't feel like therapy or teaching, but that we are hanging out together and chatting. It’s important not to paint a totally rosy picture though. Communicating using AAC does take planning, and sometimes we just don't use the method. Sometimes Lucy might push the board away, or she might feel a bit overwhelmed from a sensory point of view. While I try and keep the AAC board available as much as possible, as parents it is important we give ourselves a break from time to time. We want to do everything, however, if the AAC board been pushed away, your child is exhausted and they just want to crash in front of the TV – that’s fine too. We all need time out! As with early talkers, those new to AAC need to have the chance to babble and play with the device. This can be a lot of fun but can also leave me frustrated. For Lucy, this stage means that she will put lots of words together and play them over and over, with her face close to the device. Before I learned about AAC I might have thought that Lucy was only playing without understanding. While this might be partly true, by playing and exploring on her own, alongside modelling from us, Lucy is learning about the device, what it does and what it’s for.
to do that just like any child learning language. Looking at the process so far, I can confidently say that Lucy understands the symbols for some core words: definitely more and stop, and probably now and go. She has certainly used those words intentionally on a couple of occasions, and while there have been many times I wasn’t sure, I assume that she chose to use them. This is after two years of using the iPad app, and some years prior to that using simple paper layouts. Of course, when compared with typical language development, a child without any disability that impacts language development will start to say some single words around the age of 1 and then develop from there. In comparison, two to four words after two years of committed modelling on a language system may not seem like much – but in fact it is massive.
We are en route, heading in the right direction, and we’re excited to see how far AAC can take us. You can get more detailed information on our journey at www.mummyvsaac.blog or follow us on Twitter, Facebook, and Instagram @mummyvsaac
SO WHERE ARE WE NOW? I would love to be able to describe a eureka moment and say: ‘It was amazing! We gave Lucy the device and she chatted to us right away. She stopped nipping and grabbing us when she’s overtired, and instead used it to let us know what she was thinking.’ In reality, that didn’t happen. While in some wonderful cases AAC provision immediately gives people a voice, this is not the case for Lucy. Lucy needs to learn the language and skills she has acquired to use her AAC tools effectively, and she needs
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” “” ““ ”” ” ” “ It’s been absolutely amazing!!
I love this kind of adappve equipment It enables me to scoop him out the cot and on to my lap safely and independently
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www.centrobed.com 17
Join our group of family experts We are looking for more parents and carers of seriously ill children to join our group of family experts.
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- Flexible opportunities to get involved - Decide what interests you - Get to know other parents - Make a difference in the world of children's palliative care Register here
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LOOK WHAT DISABLED LIVING WAS UP TO LAST YEAR...
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s a charity, Disabled Living produce an Annual Report at the end of the financial year. It is an opportunity to showcase the work undertaken throughout the year by all our team. If you have any comments, I would be delighted to hear from you. Debra Evans, Chief Executive
CLICK HERE TO READ THE ANNUAL REPORT
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As well as being distributed at each of the Kidz to Adultz shows, you’ll find each new issue online, so you can always keep up to date with what’s new and read all the interesting articles. Just visit...
www.kidzexhibitions.co.uk
IT WAS GREAT
to be back!
DUE TO COVID IT HAD BEEN 19 MONTHS SINCE THE LAST KIDZ TO ADULTZ EXHIBITION What a fabulous Day we had in Liverpool on 16th November... take a look!
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It’s been very much missed for professionals.
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Great first experience at Kidz to Adultz Exhibition. Loved seeing the families there and the children trying out new equipment. Attended the event to broaden my knowledge on different equipment for children with Special Educational Needs and additional support / services that are available for children and families.
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Informative and enjoyable event.
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Lovely experience, lots of network working opportunities and useful information. Great atmosphere.
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The whole event was well managed, spaced out, felt COVID safe & informative.
Thought the exhibition was great.
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Great experience a wide variety of exhibitors and seminars were informative.
Lots of really useful representation from all agencies and companies, great way to connect.
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DON’T MISS OUT ON THE NEXT EXHIBITION
Kidz to Adultz Middle THURSDAY 17TH MARCH 2022 COVENTRY BUILDING SOCIETY ARENA The Kidz to Adultz Middle Exhibition is located in central England, with free car parking, so make a day of it! 1.5 HOURS AWAY OR LESS... MANCHESTER • STOKE • HEREFORD • GLOUCESTER SHEFFIELD • NOTTINGHAM • CAMBRIDGE • OXFORD
www.kidzexhibitions.co.uk
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AUTISM, TRANSITIONING AND THE IMPORTANCE OF
an EHCP
AS MAKAI’S TIME IN YEAR 6 CAME TO AN END, HE EMBARKED ON THE JOURNEY OF CHANGING TO A NEW MIDDLE SCHOOL. HERE MAKAI’S MUM KELLY SHOLAGBADE SHARES THEIR EXPERIENCE AND HOW AN EDUCATIONAL HEALTH CARE PLAN HELPED SMOOTH THE TRANSITION.
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ransitioning to new school can be daunting for any child. The fear of the unknown. New place. New faces. New routine. These changes can be especially difficult for a child with a diagnosis of Autistic Spectrum disorder (ASD), who has particular sensory needs. As a fairly confident 11-year-old boy, Makai seemed surprisingly calm about starting his new school. It would be in a new area, with new peers and teachers, so completely different to anything he had previously known. We had taken him to try on his uniform in advance and had done a trial run of his journey to school. We had also given him the basic run down of the dos and don’ts, together with what you can and cannot do in school. Nervously, I watched the days of summer begin
to fade and the start of the school year approach. And then here it was – Makai’s first day of school. With his morning routine displayed in the bathroom and his clothes already ironed and laid out for him, it was time to jump back into the school rat race and get ready for his first day. The obligatory first day school pictures were taken, and then we jumped into the car for the 15-minute drive to school. Makai nervously got out, school bags in tow, and we were immediately greeted by a smiling member of staff who had arranged to meet us in advance and take Makai in that morning. A quick hug and a kiss, and that was it. He was off! Six and a half hours later and it was all over. His first day as a year 7 pupil in middle school was now
complete. Despite both of our worries and anxieties about it all, his first day went amazingly. He was introduced to his new form tutor, and quickly met some new pupils in his class who took him under their
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wing. He got to explore the school and see where all the lessons for his new subjects would be taking place. Makai was also told they would be starting elections soon to nominate a new student council president, and he instantly knew this was something that he wanted to do. Each day that went by Makai seemed to settle in more and more. By the end of his first month, he had begun to see the difference between a primary and middle school. After delivering his election speech in class, he was elected by his peers to represent his form as student council president. It was his proudest moment so far! Of course, it has not always been plain sailing, and when you have a child with a demand avoidant profile, there are bound to be a few clashes along the way – homework being one of them! But it is all a journey, no matter how fast or slow, easy, or hard. However, this transition could have been so very different had we not secured an Educational Health Care Plan (EHCP) just weeks before he was due to start his new school. We had already been told that Makai was out cathment, so could not attend the follow-on school from his primary. We were then told our nearest local middle school were unable to meet Makai’s needs, which then left us completely in limbo. Luckily, I had started to process of a parental application for an EHCP needs assessment back in 2020, as his previous school felt he wouldn’t be eligible for one. I disagreed and knew this was something we would have to fight for ourselves. Thankfully, our local authority agreed that an EHCP was needed, and after a lengthy process, it was
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finally completed just in time. This EHCP has allowed Makai to gain access to an excellent middle school, with an amazing Special Educational Needs Co-ordinator (SENCO) and a brilliant team of Teaching Assistants (TAs). He now has a bespoke timetable tailored to his needs, and daily TA support to keep him on task. I cannot stress enough the importance of securing your child an EHCP to ensure their needs will be met. It is a long process, during which you may come across some resistance at times, but don’t give up! As Makai has gotten older he has learnt to embrace his autism, as that is what makes him unique. He should not have to change who he is for anyone. We have even started a YouTube channel called makaimeetsworld to try and inspire other children that the sky is the limit, and that we can do anything we set your mind to. Makai would love to work in media someday and hopes to encourage more children with any and all learning disabilities to do the same. He recently featured on CBBC’s Saturday Morning Mash-up, where he got to go on live TV and deliver the jury’s verdict on which celebrity would be getting slimed that day! Makai has a very close- knit circle of friends and family, many of whom can understand and relate to the daily challenges children and adults with special educational needs and disabilities face. Makai’s best friend is Sean, who is also 11 years old with an ASD profile. They are like two peas in a pod, and it has been great to see them develop such a deep bond over the years, when
maintaining friendships is one of the hardest things to manage. Being an only child, Makai often refers to Sean as his sibling. Sean’s mum agrees that Makai has helped Sean to be more confident when speaking, and not to bottle up his emotions. They both seem to bring out the best in each other. I am optimistic about the future and cannot wait to see where life takes us next.
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AUTISM:
why so sensory? SENSORY DIFFERENCES AND DIFFICULTIES HAVE ALWAYS BEEN PART OF WHAT AUTISM IS, BUT IT WASN’T UNTIL 2014 THAT THEY BECAME PART OF HOW AUTISM IS DIAGNOSED. SINCE THEN, IT’S BECOME INCREASINGLY ACCEPTED THAT AUTISM MIGHT WELL BE ALL TO DO WITH HOW THE BRAIN RECEIVES, PROCESSES, AND PERCEIVES SENSORY INPUT. 26
WHAT IS AUTISM? Children, young people, and adults with autism: • learn differently • think differently • communicate differently • see, hear, and experience the world differently Autism is a developmental condition. Yet, there seems to be no specific cause although there is a complex pattern of inheritance that we do not fully understand yet. Most recently certain genes have attracted interest. It is unlikely that there is one ‘gene for autism.’ It is far more likely that genetic differences, together with other factors, increase the risk of autism. The condition affects about one in every eighty people. In the UK that means there are over 800,000 people with some degree of autism. Autism is not one condition but more like a ‘family’ of conditions. The mums, dads, aunts, uncles, cousins, nieces, and nephews are all related, and indeed share some characteristics, but in other ways are quite different from each other! Before getting into the business of intervention it is vital to understand the person in terms of their unique version of autism. There are no short cuts. Autism is a condition that challenges peoples understanding
of communication, cognition, and human difference. Sometimes, for people with autism to learn, have fun, achieve independence, other people have to do things differently. People with autism have positive strengths. People with autism have unique and sometimes complex needs. Working with strengths and meeting needs promotes learning, independence, and well-being.
IN SHORT Learners with Autism: • have different sensory experiences of things. Sometimes their senses work too well and sometimes not well enough. They might struggle to make sense of what
NARINDER Narinder is a five-year-old smart young lady with autism. She is really ‘sensitive’ where it comes to certain sensory experiences and these sensitivities will make her behaviour unmanageable at times. She will cry at the mere mention of certain activities and if we insist...well you can probably picture the meltdown! She is really petrified of loud sudden noises - especially balloons popping. Just the thought of a balloon is too much. She will often listen to a story with her fingers in her ears. It doesn’t seem to stop her getting what the story is about and she will answer questions about the story very accurately. Narinder is not keen on circle time and will not sit on the carpet next to the other children. She will usually squeeze herself into a small gap between two cupboards and ‘join in’ from there. She can hold a pencil well and is good at colouring. Her colouring almost never goes over “the lines” but if it does, she will tear the whole drawing up and flap her arms in a distressed manner. It can take up to an hour to calm her down.
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• •
they are sensing which can be confusing or scary have a personality style in which the individual does not ‘tune in’ naturally to people and are sometimes more attracted by objects, systems, and how things work often have strengths like attention to detail, and can be associated with talent in areas such as mathematics, science, fact-collecting or rule-based subjects mostly have difficulties in environments where the individual is expected to be both sociable and a good communicator can find unplanned, unexpected, or un-rehearsed change anxiety provoking have a pattern of Speech, Language and Communication Needs (SLCN). Some people with autism do not speak, others have lots of language but all people with autism find the meaning of words and the way that people use them especially difficult. The speech and language differences are accompanied by problems with non-verbal communication such as understanding facial expressions, gesture, and tone of voice.
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THE HISTORY HOW WE HAVE MADE SENSE OF SENSORY OVER THE LAST 75 YEARS...
Herbert Eveloff, in his essay The Autistic Child described children who were sometimes insensitive to pain, heat or cold and whose eyesight sometimes played tricks on them.
“When I step into a room for the first time, I often feel a kind of dizziness with all the bits of information swimming inside my head. Details precede their objects: I see scratches on a table surface long before I see the table” Daniel Tammet 2009 Daniel Tammet is an author and translator who sprang to the world’s attention because he can do amazing calculations in his head, has an encyclopaedic memory, and can learn a new language in one week. There is increasing evidence that the sensory differences in autism are experienced right across the spectrum and can in fact be the biggest part of a person’s autism. Sensory therapies, sensory learning and sensory fun are part of a growing toolkit that therapists, teachers, and parents can use to get the best possible outcomes for young people on the spectrum. Learning how to investigate, profile and plan for sensory needs so that you can tailor great sensory experiences for all the individuals you work with is essential. There are some great ideas on Richard Hirstwood’s YouTube Channel.”
Mildred Creak included unusual sensory perceptual experiences in her list of nine diagnostic points for autism.
RECOGNIZING SENSORY DIFFERENCES
Bernard Rimland, himself a father of a boy with autism produced the first ‘modern’ interpretation of ‘infantile autism’. He presented autism as a biological condition. Autism was a result of brain differences. This was very different to how people had thought about it in the past! One of his ideas was that the neurological systems of children with autism found it hard to ‘attach’ meaning to what they saw, heard, or felt.
To help our young people with autism learn we need to understand everything about their version, brand, or style of autism and that includes the way their sensory differences work. The variability in how a learner’s sensory difference operates and how much it affects their behaviour and learning is included in the idea of an autism ‘spectrum.’ A quite simple investigation of a learner’s sensory profile might start with simple ‘sensory likes’ and ‘sensory dislikes’. Everyone has
1943/4
Leo Kanner and Hans Asperger (the two Austrian doctors who first, quite separately, identified autism as a condition) both noticed that the children they studied had unusual sensory behaviours. “He continued spinning objects and jumped up and down in ecstasy as he watched them spin.” Leo Kanner 1943.
1949
Paul Bergman and Sibylle Escalona noticed that children with “early infantile autism” were very sensory children. They wrote: “Colours, bright lights, noises, unusual sounds, qualities of material… seemed to have an extraordinarily intensive impact.”
1960
1961
1964
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SENSORY DIFFERENCES IN AUTISM
them! You may hate just the thought of touching polystyrene, love the smell of petrol, loathe the sound of cutlery on plates. What sort of things does your learner avoid? What do they seek out that seems to meet a sensory need? It might be that a child finds the hum of the projector painful and distracting but fiddling with a rubber band helps them concentrate. For some individuals the noise, hustle and bustle of the canteen might be too much, or perhaps it is the smell. Some learners might be really helped by heavy work activities or sport. It is important to make a thorough investigation, in different environments, across all seven sensory systems: • • • • • • •
Taste (gustatory) Touch (tactile) Smell (olfactory) Sight (visual) Hearing (auditory) Balance (vestibular) Body awareness (proprioceptive)
Luckily, there are many tools and checklists that can help us profile individual sensory differences and difficulties. Here are two but there are many others. Find one you like and fits your setting/learners. • Sensory audit tool for environments • Sensory preference checklist
GETTING THE ENVIRONMENT RIGHT So why is environment so important for folks on the spectrum? And how can we make sure we are meeting needs? The sensory aspects of things can drive you nuts if you have the supersensory system that some folks with autism have. Where most neurotypical people were born with an attenuator, people on the spectrum were born with an inbuilt amplifier! Where most people’s brains can tune unwanted stimulus out or at least turn
it down, people with autism find their senses tend to dial things up to max. People on the spectrum are often overwhelmed by detail and can’t always see the wood for the trees. Seeing what the story is, what needs doing, how A leads to Z and the order for things can be harder with autism. They often need extra support to focus attention and get a firm grip on what’s going on. Sometimes just getting started is impossible because they don’t feel guided by the imagination bit of the brain that usually fills in missing details and shows you what the finished goal looks like even before you’ve begun. Take your mind off it. Put it to the back of your mind. Don’t sweat the small stuff. Just ignore it. It doesn’t matter! Don’t make a mountain out of a molehill. Well... If you have autism then stuff does tend to matter and if something’s bugging you, getting your mind to let go of it can be nigh on impossible. A sensory stimulus can grab hold of your “here and now memory” so keeping your focus and attention where they need to be is a big battle. As before, the low arousal
approach to these issues is two-fold. “…if a mobile phone rings, it distracts a person for a fraction of a second, but it takes much longer for the person with autism to shift away from the distraction. Distractions in the classroom may prevent a person with autism from hearing the first words of a sentence.” Temple Grandin Temple Grandin is an American woman with autism whose insights into her own autism have enabled her to explain what it is like to live with autism to a worldwide audience. She was one of the first people with autism to write an autobiography. Firstly, cut down on clutter and things that compete for attention. Not too many voices at one time, watch out for crowd areas. Keep zazzy colours and patterns at bay. Don’t forget intrusive smells too! Create calm, low-stim zones where it’s easier to focus and get work done. If you are working with a youngster on the spectrum, try creating a learning cave that protects the senses and focusses attention. Pop up event tents (with the bottom cut out) are great for this.
It’s not a bad idea to think a bit more about the ergonomics of your environment. We want fussfree spaces where it’s easy to get work done. Remember what Mom said? - “A place for everything and everything in its place”. Clear labelling with words and symbols or words and photos will really cut down the arousal factor. Why? Because people with autism will spend less time and energy processing what things ‘are’ and what they ‘mean’. Secondly let’s hone those “ignoring skills” by practicing with self-regulation (SR) and resilience. Encourage your person to be better aware of their SR ability. Promote a systematic, problem-solving approach: • • • •
Stop Deep Breath Think Analyse the problem
Let’s analyse how other people do it and see if any of that would work for me. Before you know it… “Hey! I didn’t let that thing bug me! I’m getting good at this”.
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1969
Lorna Wing (who later coined the phrase ‘the autistic spectrum’) showed that autistic children have significantly more sensory problems than both ordinary children and children with Down’s syndrome and included sensory difficulties in the “basic impairments in autism.”
1969
Like Bernard Rimland, Edward Ornitz was convinced that autism was not caused by environment or poor parenting, but it was the result of a different brain make-up. He suggested that children with autism had problems ‘regulating’ their sensory experience of the world around them.
1974
Carl Delacato described hypoand hyper - sensitivity in children with autism and believed that sensory difficulties were behind most, if not all the characteristic behaviours these children seemed to show.
1979
Dr Jean Ayres (an Occupational Therapist) described ‘Sensory Integration’ (SI) problems in autism. She described SI as how the brain organises sensory information so that the brain can use it. In autism it is suggested that the different senses are out of sync with each other and cannot talk to each other easily.
1996
In her book, Autism: An inside out approach, Donna Williams described the ‘mechanics’ of her autism including living with, and adapting to sensory problems in everyday life.
2006
Temple Grandin with her book ‘Thinking in Pictures’ gave the world a first-hand account of sensory based thinking - that’s thinking in sound, pictures, movement but not language.
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WHAT ABOUT AUTISM AND SENSORY SEEKING BEHAVIOUR? There are certain sensory activities that are really important to a person on the spectrum. Certain sensory activities become hugely important or attractive to a person with autism spectrum condition. It might involve flapping, spinning, twisting, tasting, whirling, rubbing, chewing, or just staring. As with most behaviours there are a few likely factors that will operate singly, in pairs or sometimes all together to ‘cause’ it: 1. Being on the spectrum sometimes can mean the buzz you get from something doesn’t always fade with time. The person doesn’t experience ‘satiation’. Sometimes, they don’t get the feeling of ‘that’s about enough of that’ as readily as other people do. 2. “If I’m experiencing this then I’m not experiencing that!” Blocking out an unwanted stimulus with some other kind of stimulus. What might they be trying to block out? It could be anything but noisy domestic equipment, harsh lighting, smells like perfume, the feel of clothing can be problematic. We also need to also consider our own sensory impact on the person i.e., proximity, speech, body-language etc. 3. “It’s gotta be big!” Individuals whose hyposensitivity to the sensory world means that not a lot of external stimuli ‘reaches’ the brain often seek out quite intense stimuli in order to ‘re-connect’ to the world around them. So, what might our approach be? Firstly, we must acknowledge that for the person the stimulus is functional. It means a lot and achieves a lot for the individual. Is it possible to reduce
reliance on the target sensory activity by finding other activities that are just as functional but are less risky, harmful, antisocial or all consuming? What kind of thing might fit the bill? Well, there are three rules. The replacer must be: • Safe • Structured • Same, similar, or better stimulus ‘Safe’ is simple. E.g., if it’s something to chew that we are using as a replacer then it must be nontoxic, bits mustn’t break off it and there’s no way on earth a child could swallow it (this child or any other child in the vicinity). ‘Structured’ means things like time limited and part of an overall
SAM Sam, who has Asperger syndrome (a variation of autism) is thirteen and attends mainstream school. He struggles with academic work sometimes, although when you ask him to talk about the topic one-to-one, he is fine. He rarely remembers homework that has been set and if he does turn work in it is often disjointed, messy or completely off-topic! Sam has few friends at school outside the chess club. He is the butt of jokes and other students often mimic his ‘goofy’ walk. PE is a nightmare for Sam. He is always last to be picked for teams and gets shouted at by teachers and students when his attention wanders or his lack of physical coordination ‘let the side down.’ Sam will often pretend to forget his kit to dodge PE. In food technology, his teacher got very concerned recently when she observed Sam chopping carrots with one hand, the other clasped firmly to his side, “He just seemed to be wildly hacking at the veg”!
structured scheme of interesting, stimulating, and useful learning/ leisure activity. ‘Sensory same’ means it must have as much if not more of the same kind of buzz to it as the ‘real’ thing. Anything less won’t work for the person! It must relate at a sensory level to the thing that is being replaced. Like for like will work. As with all advice, safety is paramount. Don’t go it alone. Occupational Therapists can be great at this kind of thing. Insist that you get help and advice from one and start tackling the difficult stuff together. • New positive sensory plan
MAKE A POSITIVE SENSORY PLAN What is it? The Positive Sensory Plan (PSP) is a tool you can use to provide an ‘at a glance’ reference document which gives staff some information they’ll need to work successfully with a person with autism. How to get started? It starts by profiling the person’s sensory preferences (the activities which have a positive sensory pay off) and listing the sensory
Positive Sensory Plan
Chris
DOB
15 - 10 - 2000
Chris loves rough and tumble play! He is quite a star when it comes to the Rugby field. If it involves banging and crashing he loves it! He can get very excited in music lessons. He likes to crawl under the heavy gym mats and hide there. He’ll also do this when we have circle/story time on the carpet. He’s an outdoor person.
SENSORY SUPPORT Getting control of the physical and sensory environment and removing or reducing the sensory aversives. Working with the person to help them take control. We can
Name
Sensory Preferences
aversives (the things the person can’t tolerate or are triggers for difficult behaviours). We might use a template to guide us like the ones available from the Autism Education Trust. The next bit is about what we do with that information. There are two parts to this:
Sensory Aversives This is an unusual one - although he loves wrestling and deep pressure, light touch sends him “up the wall”. He is really scared of feathers. Buzzing insects also cause him a problem but we are not sure what’s behind it. Too long inside is not good. Fluorescent light might be a problem - not sure.
Sensory Support
Positive Sensory Programme It really helps if Chris does ‘heavy work’ activities. They increase his concentration and enable him to maximise on task time. Examples:
Environmental control... Chris needs access to ‘safe’ spaces like underneath
•Chris places chairs on desks at the end of the day
the gym mat. Make sure the electric bug zapper is
and takes them down at the beginning.
switched on in the classroom. Use natural light
Other Chris has had one possible‘epileptic’ occurrence. Doctors are waiting to see if it happens again.
wherever possible. Avoid using light touch to prompt •Helps the Janitor empty bins and mopping floors
Chris. Chris has a specially weighted chair.
Short activities are
•Carries the Book Library (crates of books) around
Individual support...
max. (He can keep
the classrooms
Chris is working with the school psychologist to help
sports up for much
him deal with his fear of feathers.
longer however!)
Chris should have access to 2x 20 minute periods of sport/exercise per day.
Positive About Autism™
best! i.e. 10-15 minutes
remove some sensory triggers but sometimes, in fact quite a lot of the time, we just can’t stop bad stuff happening.
POSITIVE SENSORY PROGRAMMES This consists of our ideas on how we’ll use what we know about a person’s sensory preferences or interests to: • • • • •
motivate and reward help them learn have fun or relax build a relationship communicate
First things first, we can’t do any of this without building a picture of the person’s relationship to the sensory world. If we have spent some time with the person then, as a team, we probably already know quite a lot about the person’s sensory likes and dislikes. To ensure we have got all the fine detail however we might need to: • Profile the person’s sensory needs • Audit the sensory environment • Meet as a team and compare ideas Chris Barson - Founder, Positiveaboutautism.co.uk
Copyright 2021
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Designability – INNOVATION AT ITS BEST!
DESIGNABILITY IS PERHAPS BEST-KNOWN FOR ITS ICONIC RED WIZZYBUG – A POWERED WHEELCHAIR PROVIDED FREE OF CHARGE TO YOUNG DISABLED CHILDREN THROUGHOUT THE UK.
T
he Wizzybug Loan Scheme is celebrating its tenth anniversary this year. Through this scheme, Designability has helped over one thousand children and their families, providing opportunities for independence, exploration and adventure from a very young age. Whilst the importance of early years powered mobility is evident from numerous research studies, powered wheelchairs for disabled children under five are hard to come by from the NHS. Designed and built in-house by the Designability team, Wizzybugs are made available for free to every child who could benefit. Once the
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child has outgrown the Wizzybug, it is then refurbished by the charity and passed on to another child to enjoy. The pioneering loan scheme has proved to be a resounding success, with the charity regularly sharing photos and videos of children enjoying independent movement. The impact of having a Wizzybug goes much further though – it gives children the opportunity to make choices and decisions, which has a lasting effect on them. Looking to build on the success of the scheme, Designability is working to reach the next one thousand children by 2026.
A NEW LOAN SCHEME Inspired by the demand for and the success of the Wizzybug Loan Scheme, Designability is progressing its project to create a pushchair for manual wheelchair users. Parents who use manual wheelchairs have very few options when it comes to taking their children out and about independently. Whilst some use slings or other carriers, parents report that these are often uncomfortable and do not feel safe. Yet there are no products commercially available for a wheelchair-compatible pushchair.
Designability estimates that as many as five thousand disabled parents could benefit each year, and hopes to make the product available through a free loan scheme, so that all disabled parents can benefit regardless of their personal financial situation. They are now working to raise funding to achieve this. With a fully working prototype, the project team have recently completed the first phase of user testing trials. The views of participants will now be fed back into the design process with a finalised design anticipated in 2022. Matthew Ford, Head of Design and Engineering, explained, “We follow a user-centred design process which means that we listen to disabled people in our design work, so we have been working closely with parents – and prospective parents – who are manual wheelchair users. Their initial feedback helped us to design the first iteration of the product and now their valuable input and insights will allow us to refine the prototype further. “The importance of working closely with disabled people throughout this process can’t be understated. It is core to our ethos that we create products that disabled people want to use and involving them at an early stage of the design process, and throughout, is an integral part of our approach.”
MAKING EV CHARGING ACCESSIBLE FOR ALL This approach of early user engagement has also seen Designability embark on a standardsetting project with the charity Motability to help ensure that electric vehicle charging facilities are accessible to all. In a world where a raft of EV companies are forging ahead with their own products, little thought has been given to the accessibility requirements of disabled drivers. Yet the Government has announced that from 2030 all sales of new petrol and diesel cars will cease as we transition over to electric cars.
This has significant implications, with research showing that current public charge points are largely inaccessible to disabled people*. Without being able to charge an electric car, disabled drivers could soon be facing a crisis. Motability’s research** estimates that there will be 2.7 million disabled drivers or passengers by 2035, with 1.35 million expected to be partially or wholly reliant on public charging infrastructure. Informing best-practice design for EV charge points will make them more accessible for all. It is hoped that the design guidance shared from this project will have influence around the world as the UK sets the recognised standards in EV charger accessibility. Having completed a comprehensive phase of user engagement research with a wide range of disabled participants, the project is now beginning the concept design phase where Designability’s team of specialist designers and engineers will explore and develop user friendly solutions for public EV charging. The charity will also be developing prototypes to demonstrate designs and will contribute towards a Standard with the British Standards Institute which will provide design guidance and recommendations for stakeholders in the EV charging market across the UK. Catharine Brown, Chief Executive of Designability, said, “As a charity, Designability is uniquely placed to undertake the research, develop the
products and propose the solutions which can have a positive and lasting impact on the lives of disabled people. “Whilst the free Wizzybug Loan Scheme has given independence to over one thousand disabled children in the UK alone, projects like the Pushchair for Wheelchair users and our work on EV charging infrastructure means that many, many more people are able to live with greater independence. ”However, as a charity which receives no government funding, we are reliant of the generosity of our supporters and the public to fund our work, and to make sure that disabled people have access to the equipment they need to live the life they choose.” To find out more about Designability and to support the charity’s work, visit www.designability.org.uk *Inaccessible Charging is Barrier to Electric for Disabled and Older Drivers | Research Institute for Disabled Consumers **Motability’s research with Ricardo Energy and Environment is available via motability.org.uk
Designability’s Wizzybugs are provided free of charge to families throughout the UK. The application process is easy, and the current waiting time is under two months. For more information and to apply visit Designability. org.uk
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Sleep Support FOR FAMILIES
CHILDREN AND YOUNG PEOPLE WITH SEND ARE MORE AT RISK OF DEVELOPING SLEEP ISSUES. THIS HAS A KNOCK-ON EFFECT WITH PARENTS AND CARERS OFTEN BEING LEFT EXHAUSTED AND IN CRISIS. 34
T
he Sleep Charity was set up by a parent of a child with special needs. Vicki Dawson, CEO and Founder, understands the devastating impact that sleep deprivation can have on families. Said Vicki: “When a child has sleep issues, the whole family doesn’t sleep well. Our aim at The Sleep Charity is to share information and offer support to empower people to make changes to their sleep patterns to get a better night’s sleep.” Prior to working in the charity, Vicki was a teacher in several special schools in South Yorkshire. She added: “When youngsters are sleep deprived, they can’t meet their full potential, I’ve seen this countless times in my classrooms. It can impact negatively on daytime behaviour, attendance at school through the immune system becoming compromised and ability to learn.” Alex is 7 years old and has a diagnosis of ADHD, his behaviour was extremely challenging. His parents contacted the charity for support unable to cope any more with the exhaustion they faced. A detailed assessment took place to identify the potential causes of the sleep issue and in partnership with the family a sleep programme was created. His dad Robert said: “We’d been told by professionals that Alex wouldn’t sleep because of his ADHD and just accepted this. We read about some research involving the charity where children with ADHD gained an additional 2.4 hours sleep per night after using their methods. We knew as a family we needed to give it a try and were fortunate that we live in an area where they have a funded service. “It was hard work sticking to the programme but within six weeks he had gone from not sleeping for 48 hour periods to sleeping eight hours most nights without waking. It has been life changing for us as a family.” The charity has recently gained funding from the National Lottery for a new project, ‘Sleep Talkers’. They are training volunteers from charities
nationally to support families of children with SEND. Sarah trained as a Sleep Talker and is also a parent/carer: “Training helped me to understand why my daughter had sleep issues in the past. I’ve learned things I never knew about sleep and can now pass this on to other families. I supported one family who were considering adoption for their child because they couldn’t cope with the chronic sleep deprivation faced. Once they understood about sleep, they recognised the changes they needed to make and thankfully life has improved, and they’ve stayed together as a family unit.” Sleep support is a postcode lottery and the charity operates several funded services across the country. In September 2021 they were able to launch a national helpline thanks to sponsorship from high street retailer, Furniture Village. The helpline operates Sunday to
Thursday evenings 7-9pm and is run by a team of trained sleep advisors. Helpline manager Liz Wilson said: “Our team have experience of supporting families of children with SEND. Sometimes it helps just to have a listening ear at the end of the phone. We can provide families with information to support them to improve their child’s sleep and our website is also full of downloadable resources that they may find useful.” You can find more information about the work of the charity at www.thesleepcharity.org.uk
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Disabled
LIVING
THIS IS WHO WE ARE AND WHAT WE DO…. DISABLED LIVING
A charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz exhibitions. www.disabledliving.co.uk
EQUIPZ
The team comprises occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses and continence specialists. We respond to enquiries via our helpline and website. Some people opt to visit the Disabled Living Centre based in Manchester for a free equipment assessment. Helpline: 0161 214 4590
BLADDER & BOWEL UK
The team provide information and advice for children, young people and adults with bladder and bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff. In addition, the website offers a wide range of downloadable free resources. Helpline: 0161 214 4591 www.bbuk.org.uk
KIDZ TO ADULTZ EXHIBITIONS
We organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them, with over 100 exhibitors at each event. We currently deliver five events nationally in Coventry, Farnborough, Newport, Edinburgh and Liverpool. www.kidzexhibitions.co.uk
TRAINING
We run a comprehensive training programme for professionals and carers. Most of our courses are accredited by Open Awards and others provide CPD opportunities. Our training courses can be ‘tailor made’ to suit your organisations requirements and can be delivered throughout the UK. www.disabledliving.co.uk/training
