mom and son take a selfie

To the Strangers Who Stare as My Teenage Son With Autism Behaves 'Inappropriately' in Public

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Hello there, stranger.

Sometimes.

I see you staring at my son as he towers over me and squishes my cheeks over and over while I browse the organic produce. I see you wondering why I allow him to kiss me on the lips in public, and I feel your judgment when I don’t reprimand him for wearing the attitude that the two of you are equals, rather than him a 16-year-old boy and you an adult.

I see it, and I feel it, and I respond in my own way. 

If it feels appropriate, I’ll explain my reasons. If you ask outright about us I’m more than happy to tell you. I love to share and discover reasons! And if my son begins to squirm from the weight of your misinformation or judgment or misunderstanding or difference of opinion, I’ll explain to him. Maybe loud enough for you to hear if I feel that will help.

You see, I learned early that allowing my loved ones to be themselves is more important than teaching them to be who you expect. My brothers were all on the autism spectrum, and if my mom taught me or them to act only as expected then we may have all died of self-loathing by now. Instead she taught us to explore our interests and passions and to do so with such comfort that we are able to share who we are with those who may be curious. 

She taught us to be so comfortable with any strangeness that is truly us that we can’t help but want you to be comfortable, too. Rather than feel compelled to shove our difference in your face with anger or “I dare you to say something” attitude, we live and love and are ourselves comfortably.

I’ll admit I learned the value of fitting in and learning to care about the expectations of others a little bit later–and it’s true there is value there, too. With a willingness to hear the views of the many and to consider the comfort of the masses I have been able to teach my loved ones to keep an open mind and a flexible nature. Also, we’ve discovered tips and tricks for sharing our own passions more clearly and to a bigger audience. That is a lovely thing!

So, I learned caring about discovering my unique self and encouraging those I love to discover their unique selves, first. Later I learned to care also about your unique needs and ideas.

mom and son take a selfie

The two go well together, most of the time. And when I struggle to see how the pieces fit – our unique selves and your unique needs and ideas– I’ll always choose accepting myself and my loved ones first, over worrying about you. Not only because myself and my loved ones are more my responsibility, but because I am unable to guess correctly the expectations of you, a kindly stranger staring as my son purses his lips and makes animal sounds in the produce section. Also, I believe you have the ability to help yourself and need less from me than my loved ones do.

I see you staring as my son towers over me and squishes my cheeks, and I respond in my own way. I hope you’re open to my style of communication and are truly curious rather than assumptive. Communication – every kind of communication–is understood best that way.

I learned exploring unique and personal passions first, and finding how they fit with society later.

Want to know a secret? I think, honestly, that’s the best order.

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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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