Tuesday, February 9, 2016

It's An Autism Thing … I'll Help You Understand It

Emma Dalmayne

When I was diagnosed with Asperger's syndrome two years ago I felt relieved, jubilant, and sad all at the same time.

Relieved, because I now knew myself, I could understand so much more about myself. There were a lot of ‘ahh!’ moments to look back on!

Jubilant, because I know knew I wasn't unreasonable or a complete misfit; I was part of a neurodiverse community that helped me be proud of my autistic identity.

Sad, for all the missed opportunities I had had, all the misunderstandings and meltdowns that are -- in short -- terrifying when you do not understand why you are going through them.

Most of all I wanted to help other parents, as I am a mother to neurodiverse children, including two with complex needs, and felt I could offer help to others.

I started a Facebook group with a large volume of autistics in it (with the help of a friend), to support and educate parents and carers and create a safety ‘net’ of sorts.

If these parents, I thought, could meet adult autistics and learn from us, it would help them. For them to know and realise that their children are capable of so much. That if their child uses non verbal communication it's not the end of the world -- but simply an alternative to the typical -- is extremely important to a worried parent of a newly diagnosed child.

The group is incredible and I'm proud of it. Through it I became aware of another side of the larger autism community: the side that's being exploited and hurt by corporations intent on offering ‘cures’ for autism in the most harmful ways possible, as if autism is an illness or disease.

I saw parents desperate to help their children, parents who were being convinced there were no other alternatives but these harmful treatments, that they had to 'normalise' their child through compliance therapy, that their child would never become anything and that the only way for their child to ‘fit in’ was to be ‘healed.’

I began campaigning in earnest here in the UK to expose both the quackery and the mindset of the exploited. I spoke out at London Live, BBC, Ben TV, The Independent, and The Times.

I came to the conclusion that parents do want to help their children, and that their fear comes from not knowing, not understanding how to cope or aid someone they love.

For a concerned carer or parent in that situation to be told, “Right, I understand now, what can I do, how can I help?” is a massive thing.

To help more, I began writing blogs. I have a website called autisticatedalmayne.com with loads of articles on it. I am published on The Mighty, Autism Daily Newscast, Geek Club Books, Autistic Spectrum Digest, and Special Needs Jungle.

But I had so much more to say, so much more to give.

I had often heard autistic people say to non-autistic people “It's an autism thing, you wouldn't understand.” So let's help them understand, I thought. I wrote a book.

Autistic children and indeed adults do not need to ‘fit in'; we need help, encouragement and inclusion. We do not need harmful treatments or compliance training.

If my book can dispel myths, give teachers and parents the tools to step over to our autistic point of view, to see how we see the world, feel the world even -- then I've done what I set out to do.

Tuesday, February 2, 2016

A Vacation Destination for Autistic People And Their Families: Surfside Beach, SC

John Ordover

Surfside Beach, South Carolina, a town just South of Myrtle Beach, has declared itself an “autism friendly travel destination.” For a deeper look into what this means on a practical level, John Ordover spoke with Champion Autism Network's Becky Large, the prime mover behind the project. Ms. Large is the parent of an autistic child.


[image: Neon-lit Ferris wheel at night,
behind a downtown entertainment district.]
John Ordover:  Before we get into the specifics of how the town is prepping for autistic kids and their families, what do Surfside and the surrounding area have to offer for vacationers in general?

Becky Large:  Water recreation, the beach, inlet and rivers, with boating, fishing (sea, surf, pier and fresh water), crabbing, clamming, oystering. There’s a Sky Wheel. Myrtle Beach boardwalk. Wacattee Zoo, zip lining, Broadway at the Beach, a museum, an aquarium, mini-golf, golf. Family Kingdom Amusement Park, water parks, go cart racing, laser tag, bouncy houses, roller skating. Myrtle Beach Speedway, Huntington Beach State Park, Myrtle Beach State Park, and Brookgreen Gardens.  I know I'm forgetting something -- there is a TON to do here.

JO: How would people from across the country get there?

BL: It’s only five miles from Myrtle Beach International Airport

JO: So anyone can fly in, or drive if they live close enough. What's Surfside Beach like?

BL: It’s a quiet little haven. The Town Council enforces zoning laws that keep the town small, safe and quiet. Myrtle Beach can get quite rowdy with the many high-rises and the boardwalk, but Surfside is an oasis of calm.

JO: I'm sure you know how worrying it can be for autistic kids and their families to visit new places; what do you see as their major hurdles, and how will Surfside be addressing these issues?

[image: three kids in wetsuits and lying on surfboards,
riding a small wave.]

BL: The first thing you need on a vacation is a place to stay, and local company Surfside Realty, got right on board by arranging for beach houses that are prepped for the safety of kids who might accidentally break things, or have seizures. The South Strand Lions Club and other volunteers will pack away breakables and do whatever else will help the kids and their families feel at home and relaxed.

JO: Will this include hotel rooms as well as beach houses?

BL: Yes, the local Holiday Inn, Surfside Beach Resort and Comfort Inn are ready to go.

JO: What reaction did you get from the realty company and hotels that most surprised you?

BL: When I told them upfront about the difficulties autistic kids face just being in a new place, I thought they might be put off by that -- but it turned out the hospitality industry is used to handling guests with all kinds of different circumstances. Before a family arrives they will make sure that whatever needs to be done to kid-proof the beach houses or hotel rooms will be done. If there is anything in particular you'll need for your kids to feel at home, just let them know when you’re booking your stay. It was wonderful to get this much support

[image: Beach boardwalk with palm trees, at sunset.]
JO: So the whole town is ready?

BL: We're transforming Surfside into a judgment-free zone, both the beach and the surrounding area. Businesses, restaurants are being trained in the needs of our peeps and the response and support have been overwhelming.

JO: Was it difficult to convince the business people and political entities to get on board with the idea? 

BL: Not at all.  I have the honor to serve on the Surfside Beach Business Committee Board and was thrilled to get the enthusiastic support of the entire board, especially from Sammy Truett of Moore and Associates Insurance. The recommendation was approved by the Business Committee and the Town Council issued and approved the resolution unanimously. I'm kind of a force to be reckoned with and don’t have a problem asking people for help, support, and to be involved -- and 90% of the time they jump in and want to help in any way possible.

[image: a small crowd of people on a sandy beach.]
JO: Will respite care, or aides with autism experience, be available for hire?

BL: I am meeting with Autism Service providers to arrange for exactly this. Details will be on our website, Champion Autism Network, by mid-February. The site will also have discount codes and event details as things come together.

JO: So basically, if you can show local businesses they can fill rooms and tables by serving the needs of autistic kids and their families, this can be a win-win for everyone?

BL: I’d call it a win-win-win, as not only are we helping local business and autistic kids and their  families in the moment, but we’re building acceptance and community.

JO: How did you get started with all this?

BL: In 2014 I started the Sensory Friendly Movies at the Grand 14 in Myrtle Beach.  The response was overwhelming and the parents kept asking, “What else is there?!!”  In response to them, in 2015, I wrote a grant and received start-up funds through the United Way of Horry County and started the ACE (Autism Community Education) Program with an Autism services provider down here, SOS Healthcare, Inc. which was to train businesses, venues and restaurants in the needs of our peeps. This initiative is a spin-off on that. It is a constant effort in education and Autism Acceptance, and I never stop sharing.

JO: I take it that when you’re done with Surfside, the rest of America is next?

BL: I do hope that this will build momentum and spread across the country and the globe, and that I'll be a part of those initiatives as well.

JO: If people want more information, or to track your progress, where should they look?

BL: They should go to go to www.championautismnetwork.com, or Champion Autism Network on Facebook, or email us at championautismnetwork@gmail.com.