Autism Unravelled - Guide to Half Term

For children with autism, holidays can be confusing and difficult to deal with. This

does not have to spell disaster though, and with planning and support we hope

you can enjoy a fun filled half term.

Children, young people and adults with autism need a certain level of structure

and routine. During the term time, routine is easier to maintain. However, when

the holidays arrive, children with autism can get confused as to why they are not

getting up at a certain time or going to school.

Parents and carers - you’ve totally got this! Remember the value of visual

timetables, first and then strategies and using timers for countdowns. Just take

big breathers and don’t sweat the small stuff.

SO HOW CAN YOU MAKE THE CHANGES IN ROUTINE EASIER FOR YOUR CHILD?

Many people on the autism spectrum are strong visual learners so using pictures

on the calendar (either drawings or photos) will help to reinforce the information

for your child. Make use of a daily visual calendar to help your child understand

that it is the school holidays and there is no school. Putting up a visual timetable

somewhere prominent so they can refer to it and so know what is expected of

them during the day. The daily routine can be built around meal times, bedtime

and play times. Visual timetables are also good because, if planned activities do

need to change, you can visually show things changing, by replacing one activity

with another

PREPARATION IS KEY TO A HAPPY HALF TERM

Because autistic people can find change difficult, this can sometimes lead to high

anxiety, meltdowns or challenging behaviour. Helping prepare your child for

changes to their routine will help reduce their fears. Here are some things you

could try:

 Use visual supports, such as photos, to help your child to remember where

they are going and what it will look like when they get there.

 Prepare a visual timetable in advance, taking into consideration

any obsessions, repetitive behaviour or routines that person has.

 Think about what situations they may need to understand (such as delays

or unavoidable changes to travel plans) and how you can use social stories to

help them prepare. You may find it easier to use a social story creator. Use

preparatory social stories to help your child understand where they are going

what they might see and do there

 Prepare for possible sensory difficulties – the more the person knows about

the environment they are going to the better. For example explaining that light

may be slightly lower in museums can mean it does not come as a shock.

See if the venue you are going to can offer a ‘quiet’ space to go to if needed.

IDEAS FOR THINGS TO DO AT HALF TERM IN AND

AROUND LONDON

Choosing the best places to take an autistic child?

Activities and day trips are a great way to entertain your children, but there can

be a lot of planning involved. Choosing a place to take your children is dependent

on their individual needs – there are no right or wrong places to visit.

Children, young people and adults with autism often have an intense and

passionate level of focus on things of interest; which is often called a special-

interest area. Every child is different, so paying attention to what your child likes

and dislikes will make your life and your child’s life easier when it comes to

choosing a day trip.

It is important to note that the special interests are highly important and

meaningful to people with autism, like an intense hobby.

Finding half term activities that link to your child’s area of special interest can be

meaningful and motivating. So whether your child’s special interest is transport,

superheroes or Lego, have fun on the underground, a day trip on the DLR or trip

on the London Eye - we hope you enjoy making memories together.

AUTISM FRIENDLY CINEMA SCREENINGS:

Many local cinemas now offer autism friendly screening family films in a sensory

friendly and inclusive environment during school holidays. For each screening,

adjustments are made which aim to reduce over-stimulation and create a welcoming

atmosphere.

 Auditorium lights are kept at a low level.

 Sound is played at a reduced level.

 No trailers or additions are played before the film.

 There is freedom to move around and sit where you like.

 Availability of a chill out zone close to the cinema.

 Free entry for carers with a valid CEA card.

 Ear defenders can often be requested

 Some cinemas offer social stories which are downloadable from the

booking pages.

LEGOLAND WINDSOR:

Admits full-time carers without charge when accompanying a disabled person.

Visitors should bring evidence of disability with them. You may also be eligible for a

Ride Access Pass. This makes reasonable adjustments for people who struggle with

queuing, due to the nature of their disability.

We recommend visiting the LEGOLAND website before you visit, where you can find

more information about the new system and lots of helpful tips to help plan a great

day out, including this guide and FAQs.

LONDON TRANSPORT MUSEUM IN COVENT GARDEN:

London transport museum, is a great destination for a family day out. There are old

buses and trains, some of which you can get behind the wheel and ‘drive’, plus

special exhibitions and space for children to explore. The museum can get very busy

during holidays - especially if the weather is poor - so for a quieter time try visiting

10am-11am and then from 4pm-6pm. Family learning workshops take place during

holidays, including story time and craft. There is no specific provision for special

needs although the venue is mobility accessible. Children are free up to the age of

16, and paying adults can use their ticket multiple times over a year.

LONDON MUSEUM:

London’s museums are some of the best in the world and an increasing number are

making experiences more comfortable for people with autism. Kensington institutions

the Natural History Museum and the Science Museum are two such organisations

putting on fantastic events aimed at bringing experiences to life for children. The free

and interactive Dawnasaurs events at the Natural History Museum feature a sensory

room and quiet space for maximum comfort, while the Early Bird and Night Owls

events at the Science Museum allow families to enjoy workshops at off-peak times.

As its half term, museums can get busy so it may be worthwhile downloading a map

of the museum beforehand and planning what area you want to visit. Some

museums may open early or can advise when are the quieter times to visit so it is

worth contacting them when planning a visit.

MUSEUM OF LONDON & MUSEUM OF LONDON DOCKLANDS:

Museum of London and Museum of London Docklands offer Morning Explorers

every few months. Morning Explorers is at 8.30am (normal opening hours are 10am-

6pm), is free and provides an informal atmosphere in which to explore the museum,

sensitive to the needs of children on the autism spectrum under the age of 13.

MUDCHUTE FARM:

The largest city farm in London with over 32 acres of countryside in the middle of the

Isle of Dogs to share with friendly fur and feathered creatures. There are over 200

animals and fowl on the farm! There is plenty of space for families to take their time

and find quiet areas to enjoy. There are often events and opportunities to feed and

pet animals – please see the website for details.

WILLOWS ACTIVITY FARM:

Willows Activity Farm is a Children’s Farm just off junction 22 of the M25. The ticket

price includes all shows, fun fair rides, carousels, inflatables, Tractor Ride, acres of

outdoor and under cover soft play activities plus entry to the Peter Rabbit Adventure

Playground included in the entry price.

TRAMPOLINE PARKS: 

 Oxygen Free Jumping

 Flip Out

 Bounce

 Zap Space

An excellent way to meet sensory needs through bouncing! Often trampoline parks

have autism friendly sessions so do check on line for local information

SWIMMING WATER PARKS:

 Wet n Wild at Waterfront Leisure Centre: Woolwich, Greater London, England

 Leyton Leisure Lagoon: East London

MORE INFORMATION:

The National Autistic Society (NAS) is a valuable source of information, especially

when it comes to planning days out www.autism.org.uk Some local support

groups and play schemes run holiday clubs - you can find out details of any schemes

near you by calling the NAS autism helpline

(0845 070 4004, Mon-Fri, 10am 4pm)

Check out wikiplacesforkids.com/ for loads more information and ideas on different adventures

An Ode to an Autism Friendly Christmas

It’s beginning to look a lot like Christmas... the festive season is rapidly descending upon us in all is chintzy glory!  While this build up can be exciting to some people, others with Autism Spectrum Condition (ASC) can find the changes to routine, the increased social demands and the sensory overload all too much. This season does not have to spell disaster though, and with planning and support we hope that everyone can enjoy Christmas how they want it to be.

 

Autism is a life long condition which impacts people’s lives everyday. People who have ASC may experience the world in a different way. ASC is often described as a ‘hidden disability’ as the difficulties people experience in the world are not obvious to those around them.  ASC is a disability that society needs to understand in order for neurodiverse people to be valued and included.

A feature of ASC is processing sensory input like sounds, smells and touch differently. Have you ever been on holiday to a remote place where there is no traffic noise, there are sounds of nature and tranquillity and then you return to the city and your senses are reeling; you feel overloaded by the lights, sounds, smells and pace of life. This level of heightened sensory sensitivities is what people with ASC face on a daily basis.  At Autism Unravelled we believe in focusing on a person’s strengths and harnessing those.

The lights are starting to twinkle, the bells are almost beginning to jingle and the smells of cinnamon and mulled wine are starting to waft in the air. As the days get shorter, the build up to Christmas season begins, and yes, this does seem to be earlier each year...

 

We have put together a chorus of carols to help you to have autism friendly Christmas.

 ‘Dashing through the snow’

Christmas can often be a hectic time with changes to the usual routine – as the old saying goes, be prepared (as much as possible). Without structure, people with autism can be left feeling confused and worried.

Do try to stick to your usual routine to keep things the same as much possible – if you choose to eat Christmas lunch at 11.30am because that’s the usual then so be it

Use calendars and visual aids to help countdown to events and support people to cope with changes to routine.

 

‘Jingle Bells, Jingle Bells’

With lights, sounds, smells and the season changing the sensory information can be overwhelming

Try to involve the autistic person with choosing and putting up decorations in the house. They may appreciate being in charge of the switch for the lights to help give a sense of control

Trial ear defenders for sensory overload

Prepare a space in the house or classroom where there are no Christmas decorations which can be a calm space to retreat to as needed.

 

‘Good tidings we bring’

Surprises such as presents can often cause anxiety in people with autism so limit the number of presents or try using cellophane to wrap

Limit the number of visitors to the home and ask friends and family not to come unannounced.

In social events make sure you plan how long you will stay and know how to leave easily should it become too over stimulating

 

Simply having a wonderful Christmas time’

The shops can be heaving with people whether you are going to the supermarket or Christmas shopping for gifts.  You know your child best; can they cope with the hustle and bustle of Xmas shopping? 

If you do venture out, perhaps a social story to explain that the shops can be very busy at this time of year, if you think it would be too much for your child perhaps think about online shopping or going shopping without your child.

‘All I want for Christmas is you’

If some situations are too much for you or your child to cope with, choose your battles and allow them time and space to cope with the festivities.

Don’t put too much pressure on yourself – make time to do activities you know you enjoy whether this is 10 minutes outside the home, scanning Radio Times for Christmas plans, or a soak in the bath, remember to focus on you

 For further ideas to plan for the Christmas season please see the National Autistic Society website www.nas.uk

Christmas has different meanings to different people and is bound up by family traditions.  Christmas is about taking the time to spend with family and making memories together. So whatever you do this year relax, indulge and enjoy from all the team at Autism Unravelled.

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Autism Post Diagnosis - Are we doing enough?

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Parents report that receiving the ASD diagnosis can feel like dropping a bombshell, dealing with the immediate shock and trying to making sense of it over time.

If you have ever endured a long wait for a medical appointment which may result in a stressful outcome, you know the news and its supporting information can be overwhelming. You are in the medical appointment and it is hard to focus as they tell you so much information which you almost cannot hear, it is as though your ears are ringing.

 According to NICE guidelines, parents whose children have been diagnosed with autism spectrum disorder should get an explanation on the condition and how it is likely to affect the child or young person's function. However there is numerous research which illustrates the current gaps in terms of support parents receive to come to terms with the diagnosis and strategies to cope with changes in circumstances (such as school transitions, puberty and explaining the diagnosis to family and friends). Above all of this, there is a need for this parent’s voice to be heard as an individual with valid thoughts, experiences and questions.

 There is a definite gap between giving a diagnosis and providing comprehensive and holistic support to appreciate the enormity of ASD as a lifelong condition.  At Autism Unravelled we are driven to bridge the gap and find ways of working for the benefit of individuals, families and professionals.

 When parents feel heard and empowered, they are comfortable to put joint strategies into practice. We acknowledge there is lots of work to be done to move forward but until we hold our hands up and admit that we are not doing enough and there is more to offer then things won't change.

 Many local authorities have diagnosis services leaving families with news and signposting to other services is this enough?  Information is good but is it enough to help people really work though their current challenges and how best to apply the knowledge professionals provide.  The NHS remains a hero in terms of providing health care however the current political agenda does not put Autism on the priority list for health services. 

Going back to the original question when is enough ever enough?  Perhaps because life has so many uncertainties we can never really do enough to prepare for every eventuality... But surely there is more that professionals can do?

Here are five areas where we think parents, families and community groups dealing with ASD could benefit from further support: -

1) Delivering a diagnosis: making sense of it all, in the aftermath of an ASD diagnosis, the shock, the relief, the end of the waiting to find out.

2) Bridging the gap post diagnosis: what the label means to you and your family, explaining ASD to family and friends, answering difficult questions.

3) Providing sustained support throughout life changes: school transitions, changes in the family home, new siblings, puberty and the unpredictability of life.

4) Supporting the child, young person or adult to understand what ASD means to them; embracing the diagnosis to value difference and recognise strengths.

5) Working with the child, young person or adult in their environment, to enable the person to access their environment using strategies whether that be schools, home, or the work place.

At Autism Unravelled we don't pretend to have all the answers but we are open to a new dialogue to acknowledge there has to be a better way.

** Have you had to deal with ASD in your family or community? What would you add to the above list?

Rebecca and Louise are passionate about changing the narrative about ASD. Have a story to share? Send an email to  autism.unravelled@gmail.com or send us a tweet at @AUnravelled


Same, same but different…#neurodiversity!

Society is built on differences, from skin colour to ethnicity to intelligence. One difference that is perhaps less appreciated is the way our brains work and how each of use, see and experience the world around us.

A very good example of this difference can be seen in people who have Autistic Spectrum Disorder (ASD) and may experience the world in a different way. ASD is often described as a ‘hidden disability’ as the difficulties people may experience in the world are not obvious to those around them.  Autism is a disability that society need to understand in order for people to be valued and included.

A teenage client confessed that he feels different from his peers - at break times at school he likes to have what he described as ‘thinking time’ and his friends are always asking him if he is ok, but he is fine, he just needs time to think; which makes him stand out from the others in the playground.

People with ASD are often described as having brains that are wired differently. The term ‘different’ can evoke various responses when we say someone sees the world in a different way, it does not make it any lesser and should not be viewed from a negative lens.

A feature of ASD is processing sensory input like sounds, smells and touch differently. Have you ever been on holiday to a remote place where there is no traffic noise, there are sounds of nature and tranquillity and then you return to the city and your senses are reeling; you feel overloaded by the lights, sounds, smells and pace of life. This level of heightened sensory sensitivities is what people with ASD face on a daily basis. 

It is true that we all experience sensory stimuli in different ways and it can be helpful to try and recognise our own responses. In fact, we are all on a continuum in how we communicate, understand social rules and use routine in our lives.

A good example of how we all see things differently was illustrated by family we were working with when we explained in depth about their son’s diagnosis using the phrase ‘he sees the world’ differently. Whilst his father found this phrasing to be unhelpful as he felt that this may increase feelings of difference, his mother said he already feels different and stating it will help to show him that he is understood.

The neurodiversity movement is refreshing in the sense of celebrating and valuing difference. People are different and yet the same, no matter what religion, race, age, gender - we are all human. As with anything we all cope with things in our own way, tackling each day as it comes.

We are all unique and need to continue to embrace our differences and recognise our strengths.

www.autism-unravelled.com

Autism Unravelled - September 2018