Why being ‘autism friendly’ is much more than a gimmick

Did you know that last week Britain’s second busiest airport (London Gatwick) became the first airport to be ‘autism friendly’?
Where you aware that last weekend the international toy retailer toys r us held an autism friendly event throughout the uk?

It seems the whole concept of being autism friendly has taken wings and grown and it is now common place to hear of autism friendly cinema screenings, autism friendly museums and libraries, autism friendly times in trampoline parks and soft plays, and even autism friendly Santa’s grottos!

A quick glance online and I even found autism friendly cruises!

But what is this autism friendly stuff all about and is it just a marketing gimmick?

According to Wikipedia Autism friendly means “being aware of social engagement and environmental factors affecting people on the autism spectrum , with modifications to communication methods and physical space to better suit individual’s unique and special needs.”

In practice for most places this means what the retailer Asda advertised recently as a ‘quiet hour’ where all unnecessary noice is reduced to avoid too much sensory stimuli. Autism friendly cinema showings for example have dimmed lights rather than complete darkness and a more relaxed atmosphere.

However there is much more to this than just turning the tannoy down! The National Autistic Society now has an award for being autism friendly but to get this prestigious award retailers and towns or businesses must do much more than just reducing noise or creating a more relaxed atmosphere. Criteria for their award includes having autism friendly customer information, having staff and volunteers who have an understanding of autism, making the physical environment more autism friendly, having the customer experience autism friendly and promoting understanding of autism. For anyone to go to that level is far more than just a marketing gimmick; it is costly, time consuming and takes a lot of motivation.

So why do it? And why single out autism?

What if I told you there are around 700,000 people in the UK living with autism – that’s more than 1 in 100? If you include their families, autism touches the lives of 2.8 million people every day. 79% of autistic people and 70% of families said they felt socially isolated.50% of autistic people and families sometimes don’t go out because of concern about people’s reaction to their autism. Autism friendly events have a potential to attract a huge market for businesses and towns as well as showing tolerance and understanding that reaches many more besides.

What about other disabilities?

This is the beauty of autism friendly. Autism is a huge spectrum involving difficulties to varying degrees with communication, social interaction and social imagination. Some will have learning difficulties or mental health struggles. Autism friendly events are there for everyone regardless of diagnosis or difficulty. They are as accessible to the Down syndrome community or those with genetic disorders. They are accessible to those with physical difficulties or challenging behaviour. No-one will be asked for diagnosis or membership to access any autism friendly event of any kind and therefore what is helpful for those with autism is as open and accepting for anyone facing any difficulty. We are all in this together.

So why do I care? I recently took my severely  autistic son with me shopping. He made noises, flapped his hands, laughed loudly and generally had a wonderful time watching a lift door open and close again. He can not speak. He has the mental understanding of a baby despite being 8. He is still in nappies. As the lift door opened a stranger looked at my son in disgust and said “I have come here to do my shopping, not see the likes of THAT!” I cried. It took me a long time to feel I could ever take him out again. I am not alone.

When Victoria Holdsworth approached toys r us in 2014 to ask if they would consider doing an autism event to help her son Joe she had no idea how much the entire autism friendly concept would take off. We owe her so much.

Now there are entire towns looking to become autism friendly. Liverpool has a huge campaign and councillor Mandy Garford from Dartford has a determination to make Dartford autism friendly too.

This is much more than a gimmick. This is an entire movement expanding across the UK that says to autism parents like me ‘we see you and we care.’

Do you care too? Please help by sharing this blog, supporting autism awareness and thinking about how YOUR town, business or place of work could also be autism friendly too.

Maybe one day less people will then call my son a ‘that’.

Being autism friendly is much more than a gimmick..it is a monumental change that makes the world much more accepting to children like mine.

It’s not about me

When I was young it was all about me. And then one day I got married. And it became about me and my husband. It stayed like that for far longer than it ever should have been, but then we became parents. And life no longer became about us but about two little children. For five years life has now been all about them. Even more so than many other parents as both my children have additional needs. They both have autism. One also has seizures, global developmental delay, neurofibromatosis type 1 and is vision impaired. No-one would judge us for it being all about them. Hospital appointments, school and nursery events to attend, therapists to liaise with, courses to attend, medications to be administered, nappies to be changed and so on. It could so easily be us four and no more.

But life is bigger than that.

So I open my life up to others. I am on social media outlets, I attend groups and courses and meet other families going through some of the same things we are. I take the children to clubs for other children with autism. I blog.

Why?

Because I care about others. I can learn so much from the road that others have walked before me. As a family we have negotiated some tricky terrain that has only been possible through the help and advice that others have given. Together we are stronger. Our breakthroughs become others breakthroughs and give others hope. Hearing other families achieve in areas we are still struggling with gives me hope that all things are possible. Even if I can not directly identify with thier issue or offer advice I can cheer them on, celebrate with them, encourage them. We can pray for each other, stand beside each other, link arms.

Because it isn’t about me.

Or my children really.

I could easily close my social medai accounts, stay at home with my children, not answer the telephone, stop blogging. But I would suffer. And I believe others would too. Not because I think I am someone special. But because there is something powerful and stronger about supporting others, praying for other people, looking out for someone other than yourself.

I am a people person. I comment on social media because I care. I listen to your struggles because I care. I blog because I care that someone might no longer feel alone after reading my blog. That someone may be helped by a strategy or therapy that helped one of my children. That some other family might identify with what we are going through and be encouraged.

It’s not about me.

So I am happy for the National Autistic Society to use us on their website (http://www.autism.org.uk/) The boy with the bubbles is Isaac.

And I am happy for our story to be used in their Christmas marketing:

It’s not about me.

It’s about how many other families that will be able to access the help we did as a result of campaigns like this.

It’s about someone else knowing they are not alone in this journey.

It’s about encouraging others that progress can and will come in time.

Sharing your story is not about you. It’s about humility and vulnerability. It’s about giving of yourself, even when emotions are raw, knowing you are not alone. It’s about real life and daily struggles. It’s the public recording of a journey. A journey that others can adopt as thier own, identify with, run with, be encouraged by. It’s about awareness.

It’s about helping just one person.

The sleepless nights, the endless screaming, the loss of the one word he took over 4 years to say, the yearning to see my babies walk, the pain of seeing my son have seizures, the broken heartedness of getting diagnosis after diagnosis, the fighting for thier educational needs, the public comments that crush my Spirit, the constant appointments.

It’s all worth it.

Because these two are worth it:

You are worth it.

Your children are worth it.

If one person is encouraged by this blog it is worth it.

We don’t all have to live our lives in public to help someone else. We don’t even have to be on social media. But someone somewhere can benefit from the journey you have walked. Someone can benefit from your friendship, your encouragement, your prayers. Someone can feel less alone just by knowing you care. Someone’s life can be changed by you.

It’s not about me.

It’s not really about autism.

It’s about parenting.

It’s about others helping me and me helping others and being there for each other.

It’s about awareness.

It’s about not feeling alone or isolated anymore.

It’s about rejoicing with others as they rejoice with me.

It’s about walking beside each other hand in hand.

It started with two little children but now it’s about hundreds of others.

It’s about so many other things. But it’s definitely not about ME!

“not looking to your own interests, but each of you to the interests of others” Phil 2:14

“rejoice with those who rejoice, mourn with those who mourn” Rom 12:15

“But encourage one another daily, as long as it is called ‘today’…Heb 3:13