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Making the world Autism-Friendly

The Others: Schools are out! Us: Sigh. It’s summer holidays again.

The Others: Schools are out!

Us: Sigh. It’s summer holidays again. Need to find a babysitter, need to call in favours from family, need to explain that they won’t be going to school every day. Need to explain that every day. How much time should I take off? Are they bored? How long have they been playing that game? Let’s go for a walk; nope, need to schedule in a walk in advance. Remember to find time to schedule in walks – look for any activities.  Need to schedule meals. Need to make sure they get some exercise. Will kids from school want to play? Should I invite them over? Fear. Dread. Swimming? No, will need to put sun cream on. Will they keep it on? No, probably not. Maybe a pool in the garden. Need to schedule times, need to rent pool. Are they okay? Are they enjoying their time off? Do they understand this is a holiday? Are they relaxed?

Summer holidays, Christmas break, Easter break are all terrifying times for an autism family without a 24/7 parent based at home. It’s always difficult to ask for help from friends and family because you know it’s not just babysitting while you go off to work, it’s autism-sitting.

We were quite lucky because I would be home with Chris over the summer holidays, and even after I moved to Lancaster I would fly back as soon as exams were over in May and stay until September. My parents didn’t have to go through this guilt-trip. Also, my Nan and Pop are so in tune with Chris that leaving him with them while my parents were at work and I was at work in the UK, was done without a worry. Nowadays, mum is a stay at home mum so there is no worrying; living the hakuna matata life. I was on the phone to them the other day, they were at the shopping mall waiting for the shops to open – typical Chris and mum – and she was telling me that her friend’s daughter has decided that she will be doing ‘lessons’ with Chris this summer. She has books, notepads, gold stars and even a red pen. She is 11. Chris just goes along with it – he compromises for an hour a day. Then he eats, swims, plays games on the tablet, has his tea, his shower, and watches his cartoons according to schedule. He gets to spend a week at his nan’s as well while mum gets to go on a well-deserved cruise.  He loves spending time at his nan’s – mostly because he gets spoiled with ice cream and chocolate because he knows just what smile to put on and how many kisses to give to get pop to drive to the shop for him. He also knows where they hide the treats. I mean we all know – it’s just one of those ‘secrets’.

Not everyone is as lucky as us though. I think of all the supermums and superdads out there stressing over the holiday break, trying to balance their work, their time, their other kids, their autistic kids, worrying about everything. I have been thinking about you over the summer, and I did some research.

I write this for you: the dad struggling to stay up after work to tuck in his kid who won’t go to bed until the sheet is spread just right, the mum filled with guilt as she drops off siblings to play dates and wonders how to entertain the one left, the families that don’t go shopping, or eat out because of the fear they’ll  disturb everyone else. I write this thinking of how amazing you all are and how much more than any of us you deserve to enjoy these months.

1.       If you are near EVESHAM, staff are now autism trained at The Valley shopping centre. The National Autistic Society carried out the training which included sensory issues that may affect people living with autism when shopping and why this can be a trigger for stress and anxiety.

2.       If you are in GLASGOW, a similar story has unfolded in Braehead shopping centre as well. Braehead Shopping Centre has received praise all the way from Westminster for training received from the Scottish Autism charity and for introducing a trial quiet hour - turning off music and flashing lights - to reduce stress for shoppers with the condition.

-          Air space free-style jumping and trampolining centre in East Kilbride are offering autism friendly sessions on the last Sunday of every month. Trampolining is so much fun! It’s the only things Chris enjoys when we go to an amusement park. The jump makes you feel weightless and it reduces sensory sensitivity. On the Sundays, the centre will be exclusive to families with autistic children. The disco lights and music will be turned off to avoid any sensory discomfort and the party rooms will be made available before, during and after the sessions for relaxation. Complimentary juice and biscuits will also be on offer.

3.       If you are in LONDON, Ambitious about Autism has supported a restaurant to gain the first of the National Autistic Society’s Autism Friendly Awards. It’s called The Gate, it is vegetarian and it is based in Islington. The restaurant offers an online ‘visual story’ for you and your kids to familiarise yourselves with the building, it has a ‘Chill Zone’ sofa area and, most importantly, trained staff. If you were as scared of restaurants as we were at the beginning why not ease them in by visiting an autism friendly restaurant first?

4.       If you are in or around NEWCASTLE UPON TYNE, Seven Stories, the National Centre for Children’s Books has revealed a summer schedule jam packed with authors, illustrators, exclusive exhibitions and activities for the school holidays. Seven Stories will launch an Early Bird Opening for visitors with a spectrum condition from Saturday, August 6 and every Saturday of every month to allow for a family day without the hustle and bustle that might overwhelm some visitors.

5.       If you are in or around LIVERPOOL, Calderstones Park is hosting its Urban Beach event again this summer from July 23rd to Sept 4th. The park is transformed into a huge fairground with a man-made beach, deck chairs and buckets and spades a plenty. Autism and disability friendly mornings take place on Mon 25th July and Mon 22nd August 10:30 – 12:30.

6.       Dimensions UK is an organisation which works with ODEON, Cineworld, Vue and Showcase to host Autism Friendly Screenings at over 250 cinemas nationwide. This is arranged for Sunday mornings throughout the month when films suitable for all audiences are screened in a sensory friendly and inclusive environment; this includes a relaxed environment where people understand the needs of children and families with autism, sound turned down, no trailers or advertisements, staff trained in autism awareness, freedom to move around and sit wherever guests like and the freedom to bring your kids favourite food and drink.

7.       Dimensions UK and the Association of Senior Children’s and Education Librarians (ASCEL) are working together to transform libraries into an autism friendly environment. This is a ground-breaking initiative which is aiming at all 3,000 or so public libraries.

8.       In KENT, the East Kent Mercury has teamed up with the National Autistic Society (Dover and Deal Branch) to make business owners aware of how to deal with their clients on the spectrum. The collaboration will be flagged to shoppers with a distinctive branding in shop windows.

9.       Exeter, Liverpool, Aylesbury and Aberdeen have all bid and launched campaigns to be named the UK’s first autism friendly city. As part of their campaigns they are reforming their shopping centres, restaurants, supermarkets, streets, offices etc. to make the cities more accessible to people on the spectrum.

10.   Play dates. It’s scary and it may seem impossible but you can arrange them for your kid on the spectrum. It may take days to plan but it will be so worth it.

-          Pick a friend of the family. Ask the parents if it would be okay to arrange this, you wouldn’t want them to feel obliged. Ask them to speak to their child and explain what sort of allowances will need to be made.

-          Arrange one- on-one interaction so as to avoid as much disturbance as possible.

-          Pencil it in the calendar in advance, put a picture of the playmate and use their name when you refer to it.

-          Pre-select the activities.

-          Hover but don’t push interaction; some kids just play on their own sometimes.

-          Get feedback from your child after and talk about how and what to make it better.

-          No two children are the same – some may take time to adjust and that’s okay. Over time it will get easier for them; and for you!

Sometimes I wish Chris was here, and that he could benefit from all the brilliant initiatives happening all around the UK; and then I remind myself how happy he is in his own world and how much I want to be part of it.  If I had to pick the one place I would avoid taking Chris – it would be the library; because of the fear of being shushed. Maybe Chris would love the library, maybe he would read or look at pictures or enjoy the atmosphere – but we robbed him of that experience because we wanted to facilitate the strangers around us.

It’s time strangers started facilitating us.

It’s time to make the world autism-friendly.

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