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Why We Couldn't Be More Proud of How Our Autistic Son Handled August

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Each year, millions of students whiz off to the first day of school without much of a problem. They may wonder who their teacher will be or if their best friend will be in their class, but it doesn’t really get in the way of them enjoying the end of their
summer.

For some time, this has not been the case in our house. The last three weeks of August in recent years have become a challenge for our 15-year-old autistic son John and by extension, for my wife and me. Every year we would brace for the inevitable firestorm of anxiety and tears and worry and stimming that would come like clockwork.

Every year we would do our best to keep him busy, keep his mind occupied. Fishing. Friend visits. Water Parks. Amusement  parks. Hit the pool.  Hit the beach. Hit the bottle (OK that one’s just for us!). Still the anxiety would arrive and it would just come on suddenly, and then largely dissipate after day one of school. The anxiety would be so bad he would scarcely enjoy the things we were working so hard at doing to keep him busy.

Sometimes I didn’t know what made me feel worse. Was it the fact that he had this anxiety, or was it the fact that he wasn’t enjoying anything at all?

We waited for it this year, the anxiety. Waited for it like that aunt who just shows up unannounced in a cab, tells you to pay it and then stays for a few days. We braced ourselves. We filled the calendar. We manned the battle stations and went on red alert, and do you know what happened? It never showed. And while you might miss an aunt who just shows up out of nowhere and visits, I must say we really didn’t miss the anxiety.

He went fishing, he hung out with his friends, he hit up amusement parks and fairs; and this year he enjoyed it all. Where there was brooding, we had smiling. Where there was angst, we had joy. As a parent, it was a beautiful thing to watch. To see him just being a kid brings me a sense of immeasurable joy. It was so much more than just the fun though. It’s a feeling of accomplishment. Like maybe the 8000th time I’ve said, “You’ve done this all before, and it’s fine, you’ll be OK” was finally the one that stuck? In that case I’m glad I never stopped saying it.

That feeling of success and accomplishment just doesn’t always come from the same place for parents of an autistic child as it does for parents of neurotypical kids. This August of Peace, as I now refer to it, is our “he made the team” moment for my wife and me. And you know what? We couldn’t be more proud of him.

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Ideas That Will Make Going Out to Eat More Enjoyable for Kids With Sensory Sensitivities

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For many people, going out to eat is considered a treat, but for people on the autism spectrum or people with sensory sensitivities, spending an hour or two at a restaurant can be too overwhelming to enjoy. To make dining out a pleasurable experience for everyone, The Mighty spoke with Alyson Musetti, a behavior analyst at Anova, a nonprofit organization which provides education and resources to people with learning differences, to learn some tips and tricks to make dining out more enjoyable. Below are some ways families can prepare their children, as well as make their own sensory-friendly restaurant kits.

Before Going Out to Eat

Identify Your Child’s Triggers 

“If parents know what the potential triggers are for their child, they can be equipped with the strategies and tools to manage those [circumstances] to prevent the problem behavior from happening,” Musetti said. Think back to previous experiences dining out, identify what went wrong and try to come up with creative solutions for addressing those issues.

Prepare Your Child, Let Them Know What to Expect

Let your child know what they can expect to happen at the restaurant. The more information you can provide, the better. Some things you can tell them include the name of the restaurant, where will they sit (table or booth, windows or no windows, etc.), what kind of food will be there, what kinds of people will be there (workers, cooks, other families, etc.), what will they do while they are sitting at the table, how long will they be there, and what happens after leaving the restaurant.

You should also let your child know what you expect from them. Talk to them about behavior at restaurants. Musetti recommends setting the following expectations: using an inside voice, waiting patiently for food, saying please and thank you and sitting in the chair.

You can also look for social stories about dining in a restaurant. Reading social stories can be helpful before going out to eat as well as while you are at the restaurant.

Make a Sensory-Friendly Restaurant Kit

As part of their programming, Anova runs a sensory-friendly restaurant initiative, which provides restaurants with kits that can help children on the spectrum avoid meltdowns. The program is still in its infancy (only a dozen restaurants in Northern California carry the kits so far), so Musetti shared with us how you can make your own. Here is what Anova’s kit includes (links are suggestions with comparable items):

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To the Parent of an Undiagnosed Autistic Girl

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Dear parent/carer,

I’m writing to you in my capacity both as the parent of a little girl awaiting assessment for autism, and as an adult autistic woman, and one who has spent most of her life, until the age of 36, undiagnosed.

I know you’ve been wondering about your girl. Perhaps someone has said something – a family member, perhaps; a friend; a teacher. Or, maybe, you’ve been thinking for quite some time that your child might be a little…different. “Autism” is the thing that’s been suggested. And you’re wondering.

Perhaps you’re wondering about the formal assessment process. Perhaps you’ve already begun to get things moving, or maybe you’re little further down the line, and it’s dawning on you that the whole thing is far more arduous than you’d ever imagined. I get that. Totally. My family is there too.

And so, you’re thinking you might not go through with it. After all, she seems to be doing fine right now. Yes, she’s a little on the “quirky” side, but on the whole, she seems to be coping; you’ll just leave things as they are. Besides, you don’t want to “label” her unnecessarily.

Thing is, though, we’re always labeling people.

Clever. Talented. Bright. Inquisitive. Curious. Compassionate. Kind. Funny. Sociable. Chatty. Tomboyish. Earnest. Bookish. Quirky. Eccentric. Precocious. Gifted.

Those don’t sound too bad, do they? Sure, you might be more keen on some of these “labels” than others, but on the whole, there’s not a lot to worry about here.

What about these?

Bossy. Opinionated. Controlling. Aloof. Selfish. Rude. Shy. Anxious. Naughty. Irritating. Antisocial. In your face.

Is it that you don’t want to label your girl, or is it simply that you don’t want to label her as “autistic”?

She’s fine now. She’s coping, as you say. But what about in the future?

As she grows older, other labels might start to creep in.

Withdrawn. Lazy. Lacking in application. Arrogant. Inconsistent. Over-sensitive. Away with the fairies. Disorganized. Teacher’s pet. Uncooperative. Defiant. Difficult. Out of control.

And it might happen that you seek out professional help on behalf of this girl, who may seem to be so brilliant in some ways, but to be struggling so desperately in others. And then, other labels might be used.

Bipolar. Borderline. Obsessive-compulsive. Clinically depressed or anxious. Anorexic. Bulimic. Suicidal.

Some of these will be wide off the mark. Observed autistic behaviors will be wrongly categorized, and a wrong diagnosis applied. And the struggles will continue.

Other labels might be correct. She might feel pain, confusion, frustration, stress, and exhaustion from puzzling over her identity; from trying, or at times refusing, to fit in, in a world which she doesn’t understand and which doesn’t understand her. From the onslaught of overwhelming information and sensory input. From trying to “cope.”

At times she may try to “mask.” And if she does so, sometimes she will do so successfully. And at other times she will get it woefully wrong. And either way, it’ll be stressful to keep up, year upon year upon year.

She might struggle with education and employment.

Or she might still do well in life.

But even if she does, something inside will never feel quite “right.” Something will be missing. The key. The glue. I hesitate to use the words “puzzle piece,” they’re too loaded and emotionally charged for many of us; but perhaps they’re appropriate here. This girl is not the puzzle, but she isn’t getting the full picture. Something that should be identified will not be.

What would happen if she did receive that label, earlier in life? Before so much of life has got in her way, obscured the picture, prevented the right details from coming through?

She would still, of course, find some things easy, and some things very, very difficult. Inside, she’s still the same person, and autism is a huge part of that. And support can be patchy (that’s something of an understatement, really).

And yes, there is stigma attached to the “autistic” label. But there are many of us trying to change that. And, slowly, it is getting better.

But by knowing – fully – who she is, your precious, wonderful girl can start to take ownership of who she is, to embrace her identity. She can work with who she is, rather than against it. By doing so, she can be happy.

If she goes to college or university, her label may help her to access the kind of support with her studies that I could have done with, but never had.

When she’s in employment, that official label will mean she’ll be legally protected, and entitled to adjustments to enable her to do her job to the best of her ability. Understanding who she is might make her less likely to be disciplined for her behaviour, to lose jobs because of her behavior, or struggle on in roles she is unhappy with and finds stressful.

Again, support might be patchy. Really patchy. Her employer might not be among the most enlightened. But an official diagnosis greatly increases her chances of getting any support that is available.

The assessment process might be long. Frustrating. Emotional. The right conclusion might not be reached for some time. But the earlier she knows who she is, the more able she’ll be to learn the triggers for her meltdowns, to understand and mitigate some of the ways her autism makes certain things difficult, and to celebrate the strengths it brings.

There may be times when she rejects her label; and of course, she’s perfectly entitled to do so, as long as that’s her decision.

There will, sadly, also be times when disclosing her label might cost her dearly. And that’s awful. And we must all work to stop that happening. We are doing so. And we’ll keep on doing so until it does stop.

But an official label may give her choices, and an understanding of herself, that she would otherwise be denied. And that’s important. That’s vital, if she is to find her place in the world; if she is to thrive.

And she can thrive.

And whenever she chooses to make contact – to engage – there’s a whole community of likeminded individuals out there who’ll understand her. Who’ll know her struggles. Know where she’s coming from. Who’ll help her, and provide a safe place for her to be herself.

We’ll help you too. We like to share our knowledge and experiences. We’re keen to educate. And we’ll do whatever we can to help you understand. I know you want what’s best for your girl. Of course you do.

And when that girl of yours comes to us, we’ll welcome her. With love, understanding, an open mind, an open heart, and open arms.

Yours,

An autistic woman who understands

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What Happens When My Autistic Child Acts Differently at Home Than at School

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My son is going through a difficult time. This morning my husband carried him to his taxi, kicking and screaming. He was stressed, and I was anxious and worried.

I haven’t called the school and asked if he is OK because I know what they will say: “He is not like that in school.”

Reports from school don’t marry with the child at home at all. In school he conforms, is settled and appears happy. At home he can be violent, unpredictable and highly distressed. The great divide between home and school is a challenge.

When my autistic child behaves differently in school, it makes me feel like I am to blame for his meltdowns at home.

When the common denominator for the challenging behavior and meltdowns is home, it is all too easy for professionals and schools to jump to the conclusion that “bad parenting” is at work. We are accused of lack of discipline, lack of stability, lack of structure, feeding our children the wrong food and even not loving them enough. But just because a child has the ability to “hold it together” in a controlled environment all day and releases the lid on their frustrations, stresses and anxieties at home does not mean home life is awful. In fact the opposite is true. If a child did not feel secure, loved and safe at home, he would likely continue to “hold it together” for fear of releasing his true feelings.

Instead of blaming parents, schools and professionals should be more understanding of the difference between home and school and more willing to listen when a child is behaving differently outside the school gates.

When my autistic child is different in school it makes accessing support challenging.

So many parents know their child needs support but continually get denied services due to presentation within a school setting. It is frustrating and damaging for so many children who put on a front within the classroom but who inside are screaming out for help. The system is loaded too much to the side of education. A referral put in from a school may be readily accepted, yet a parent’s request for the same service is often refused. There is still the assumption that if a child truly had challenges, these would manifest in all settings in the same way. So parents and children get left with little support, and hundreds of children fall through the system because they are “good” in school. Perhaps if schools were more aware of stresses within the classroom environment — like noise, lights and the stress of conforming all day — for children with sensory sensitivities, they may be more willing to support referrals.

When my autistic child is different in school, it appears I am lying.

I have been at the meeting when all eyes are on me, and I know they think I am lying or at best exaggerating. I should never have to do it, but I have resorted to videos and photographs of my child at times to prove what I say actually happened. When I mention strategies we have out in place to help support my child at home and how these are not working some days, people once again assume I am lying. It makes parents feel alone, belittled and unworthy. We already feel like we are failing our child, and those feeling are just made worse when schools give more and more examples of wonderful behavior at school in answer to every incident at home. He showed aggression at home but shared his pencils with another child in school the same afternoon. He had a meltdown over homework yet got full marks in his spelling test the same day. It can be the same child. The sooner professionals and schools understand this, the better for everyone. Have they never been professional and polite to someone in their job only to go home and let off steam by moaning at their husband or shouting at a driver who cuts them off?

Our children are complex and confused, and yet they soon learn where they can “explode” and where they can’t. Sometimes their triggers are only home-related, and this must be accepted. Just because you have never seen the child react like that in the environment you see them in, does not mean the parent is lying.

I know what it is like to see my child happy, flappy and full of delight. I also know how hard it is for him and myself to see him so distressed he cannot control what he is doing.

Put me in different environments, like an interview, a prison, a party or a vacation, and you will see me change to suit my environment. My child on the autism spectrum is no different.

I need people to see this and understand.

Image via Thinkstock.

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Anova's Sensory-Friendly Kits Help People With Autism Avoid Meltdowns at Restaurants

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For families with children on the autism spectrum, dining out can be particularly challenging. To help families have a less stressful dining experience, Anova – a nonprofit for children with sensory and learning differences – is providing restaurants with sensory-friendly kits designed to prevent and minimize meltdowns.

“I came up the idea to launch a sensory-friendly restaurant initiative after hearing so many of the families we serve at Anova express that they often choose not to eat out at restaurants because of the challenges associated with sensory processing disorders,” Jackie Hadley, Anova’s manager of charitable development and community relations, said.

Anova’s kits were designed by occupational therapists and behavior analysts and include noise reduction earmuffs with disposable covers, a wipeable weighted lap pad, a visual motion toy and several sensory, stress, and fidget toys. The kits also include social stories in both English and Spanish and a mood zone chart with pictures for kids who are nonverbal or have trouble communicating. The kits are meant to be used during dining and then returned to the restaurant. All kits are provided free-of-charge to any customer who requests them.

Anova sensory-friendly kit

“Most people know that 1 in 68 children are affected by autism, but not many people realize that 1 in 20 children experience sensory processing disorders,” Hadley told The Mighty. “It is not just those with autism [who struggle] with being overwhelmed by different sensory stimuli such [as] touch, noise, smell, visual, etc., so we wanted to include something that helped in all those areas.”

Since the program’s launch in April, Anova’s sensory-friendly kits can be found at all 11 Mary’s Pizza Shack locations in Sonoma County, California, as well as Steele and Hops in Santa Rosa, California. Participating restaurants receive several complementary kits as well as sensory-friendly training videos and in-person training workshops.

According to Hadley, who checks in with the restaurants once a week, feedback from families and restaurant employees show the kits work. Among the program’s success stories are families coming in regularly for pizza night and special education field trips to Mary’s Pizza Shack.

Anova sensory-friendly kit

While Anova’s kits are currently only available in California-based restaurants, Hadley hopes to expand the program to restaurants beyond the state. “We would be thrilled if any additional restaurants decided to use our sensory kits or implement a program of their own,” she said. “We would be happy to provide the kits, help with sensory training, and offer guidance to successfully run the program.”

So far Hadley has received requests from Australia and the East Coast, as well as special education teachers in the in Novato and Sacramento, California, school districts. “The thought of the program expanding on a national scope and into classrooms would be awesome,” Hadley said. “Since we are a nonprofit, we would need to seek grant assistance to provide kits at that scale. However, we welcome the opportunity to assist whoever reaches out to us and will do what we can to contribute to a positive and collective impact in the world.”

Anova’s kits are not currently for sale, although the organization may make them available for purchase at a later date. Those interested in making their own sensory-friendly kit can learn how here.

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When I Wrote to NBA Coach Steve Kerr After He Wore an Autism Awareness Pin

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My name is Louis Scarantino. I have autism, and I have had a lot of unexpected things happen in my life. This story is about one unexpected thing in particular that happened to me.

During the 2015 to 2016 NBA season, I wrote a letter to the head coach of the Golden State Warriors, Steve Kerr, because he wore an autism puzzle piece pin while coaching a game to support autism awareness. It was the greatest season in the history of the NBA franchise Golden State Warriors, as they broke the win and loss record during the regular season that year. I wrote to him after seeing a photo on Facebook of him wearing the autism awareness puzzle piece pin he wore while coaching a game during autism awareness month, which is in April of every year. The photo was shown on one of the autism pages I follow on Facebook. I felt I had nothing to lose by writing to him, so I decided to take a chance.

I told him thank you for supporting the cause while coaching the team on their incredible season that year. He wrote back to me a bit later saying this. I couldn’t wait to open it. It was a Golden State Warriors card with the logo on it.

Hi Louis,

Thanks for your nice note, I really appreciate it! I am glad to stand up for Autism Awareness and you should be proud of the work you’re doing too. Thank you for supporting the Warriors!

All the best,
Steve Kerr

White card with Golden State Warriors logo (a yellow bridge over a blue background) on it

Handwritten note from Golden State Warriors Coach Steve Kerr

I was grateful to get a response from a famous person I wrote a letter to regarding the cause. It was the first time in my life that I ever received a response after writing a letter to a famous person. It felt like there are people in sports that don’t only care about glory and money. Some care about fans, causes in the world, and other things too. It also meant a lot that the response was handwritten instead of typed and signed at the end. It made me feel like it had a lot of meaning when he wrote it. I never expected to receive this, and this is actually the third time in my life that I’ve had a moment involving a famous person. I’m telling other people with autism to reach out to the people you admire. They might write back and give you a response I got.

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