McDonald's french fries on a table next to a McDonald's beverage cup

To the McDonald’s Employee Who Double-Checked My Order: Thank You

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I was with a friend shopping late one afternoon, and we decided we were hungry, so we stopped by McDonald’s for a quick bite. As someone on the autism spectrum, I’ve always been sensitive to certain foods. Some might consider me to be a “picky” eater. I have tried new foods over the years, but this time, I settled for what I usually get.

When I was younger, ordering my food would have been difficult for me to do. But as an adult, I have very few issues with this part. I walked up to the cashier and told him what I wanted.

“I’d like a plain double cheeseburger, small fries, and a medium chocolate shake with no cherry.” I ordered like a pro.

“OK.” He began to punch in the information, and then stopped. “When you say you want a ‘plain’ double cheeseburger, does that mean you want only the burger and the cheese?” he asked me.

A huge smile grew across my face.

“I would like just the burger, the cheese, and the bun.” I explained.

“Got it.” He replied, and continued. “Sorry, I just know some people are really particular about their order, and wanted to check to make sure I had it right for you.”

“Oh, I understand completely!” I told him. “There are a lot of people who are like that for a reason, and I appreciate that you took the time to ask me.”

I ate my meal happily.

It may not seem like much, but for some folks, the wrong order can be devastating. Perhaps someone has a food allergy. Or maybe a child would have a meltdown. Imagine being so hungry, potentially unable to communicate exactly what you want or need, being overwhelmed by the environment, and then ending up with food you just can’t eat (whether due to allergies or sensory issues).

So to the McDonald’s employee who took the time to make sure my order was correct, thank you. Keep up the awesome work, because it really does make a difference.

 

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Photo source: McDonald’s Facebook page

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What I Mean as a Mom When I Say Autism Awareness and Acceptance

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Awareness and acceptance have been the new buzzwords in the autism community lately. No, let me correct that — autistic individuals and their loved ones have always wished for these, but people are talking about it now more than ever. So what exactly do these words mean? Are they just another shooting star or are they the guiding light for the rest of the world?

I wish I could pick up a microphone and chase people on streets, asking them these questions and figuring out society’s collective understanding when it comes to these two words. However, since that seems like a difficult proposition, I’ve decided to put forth my perspective of what it means when I say I want the world to be aware of what autism is and be more inclusive of kids with different needs.

To me, autism awareness is knowing that autism is not a disease but a set of developmental delays leading to social, communication, behavioral and sensory challenges.

Awareness is not just knowing that autistic people can have meltdowns, it’s also understanding what leads to these meltdowns and how we can help.

 

Awareness is knowing that not all autistic kids are geniuses with some social awkwardness, and it’s also knowing that not all autistic kids have intellectually challenges.

Awareness is understanding that each autistic individual is as distinct as any other person out there; that they don’t come out of a factory with the same set of “quirkiness.”

Awareness to me is knowing that autism is not just about flapping hands, spinning objects, repetitive behaviors and shutting ears. It can also be about working through challenges and breaking stereotypes. It is in knowing that Autistic people can also achieve the extraordinary if provided the right channel.

Awareness is understanding that autistic people are not “weird,” they are different in their own unique way.

Awareness is understanding that autistic individuals might retreat into their bubble often, but they are not invisible.

Awareness is not just knowing that there is a large percentage of autistic individuals out there but also understanding that they deserve a life of respect, too.

Awareness is understanding that autistic people might not all communicate the same way, but they still have a say.

Awareness is understanding that autism doesn’t have a “look” or a “face” to it.

Awareness is not just running marathons and lighting it up blue, it’s enlightening our minds, too.

Awareness is understanding that it is the path to acceptance.

Let’s talk about acceptance.

A lot of us are under the false notion that we embrace autism acceptance, but do we? It’s not acceptance if you have a special classroom for kids with different needs but you refuse to have them in the graduation parade or deny their award for their hard work. When there are autistic kids still being bullied, acceptance feels a long way from home.

Acceptance is not just calling an autistic kid over for a birthday party. It’s acceptance if you teach your kids to make the effort to connect with that child.

Acceptance is the pressing need to go to that child, that peer who might be sitting alone, reach out, and try to communicate and be a facilitator, if not a friend.

If you think you are doing an autistic individual a favor by offering him a job or an opportunity, it’s not acceptance. Acceptance is not when you condescend, it’s when you respect them for who they are.

Acceptance is not just smiling gently at an autistic child but also raising your voice when you see someone being unfair towards them. If you say nothing, you have still some distance to cover.

Acceptance is not just joining your friend in a walk or wearing a custom t-shirt saying how you stand by them. It is in teaching your family and your friends about appreciating the challenges that autism can bring and being a friend to people in the autism community.

Having a special day at school or a small classroom speech highlighting a peer’s autism sounds more patronizing than inclusive to me. How about actually creating more inclusive environment and making them part of the everyday classroom so all kids can learn the normalcy of co-existing. That, I would call acceptance.

To me, acceptance would be when every playground has kids of all needs playing with each other, when no kid is sitting alone in a cafeteria because he has needs different from others, when his sensory needs are not mimicked and laughed at but understood and accommodated. That would be acceptance to me.

Acceptance is when a video of a child walking hand in hand with an autistic child or a stranger helping a family with an autistic child is not one in a million but run of the mill.

Acceptance is more than just opening doors — it’s opening your heart and your arms, too.

While I ask for more understanding and inclusion from many, I also am thankful for those who have made the world a better place for people on the autism spectrum by their thoughts and actions.

Just like I wish the world to be free of war, poverty and hunger, I hope one day we will all learn to respect each other’s differences. That one day we will be more aware and more accepting of autism and every other disability.

Follow this journey on Tulika’s blog.

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You Can’t Put a Label on How Tasty These Baked Goods Are

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Jacob Wittman, who’s on the autism spectrum, wanted a career as a chef and No Label At The Table Food Company is his own creation to make that happen.

Read the full transcript:

You Can’t Put a Label on How Tasty These Baked Goods Are

No Label at The Table is a gluten- and dairy-free food company staffed by people on the autism spectrum.

When Jacob Wittman turned 18, he decided he wanted to be a chef in a restaurant.

Wittman, with his parents help, started the baked goods company in spring 2017.

Based in Carmel, Indiana, the company has made its way to farmers markets and a wedding tasting.

The company’s $2 snickerdoodles and brownies packages usually sell out within hours.

The company continues to grow and employ more adults on the spectrum with every event.

To learn more, visit nolabelatthetable.com.

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Autism Makes Me Who I Am — and I'm Proud of That

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I didn’t know there was an Autistic Pride Day — June 18, 2017 — until the day before yesterday! And now it’s really playing on my mind. I’ve read all sorts of comments on social media. Mostly of the “Oh, really, there is one?” variety. But there was one post…

The writer asked why they should have pride in their neurology, and asked whether an Autistic Pride Day drew unnecessary lines that divide humanity. Reading those words made my brain hum. The cognitive wheels started whirring, and I did what I always do. Parse, deconstruct and draw the meaning from the words. Cogitate, reflect and ponder. Then finally, systematize my thoughts and my response.

So here it is.

I am proud to be autistic. Due to heredity, genetically, I could never have been anything other than autistic. My sense of pride was built during a childhood being nurtured and supported as “other.” Boy, my family was different! Papa was a refugee who came here after WW2. Mum was from the country, but was a woman out of time. She, like many of her generation who were liberated by the Women’s Movement, might have felt happier and more fulfilled if she’d been born half a century later. Their family, me and my siblings, stood out like flashing red lights in our white bread and comfortably conservative neighborhood. Nah. We never fitted in! Too bright, too quirky, socially isolated, focus fixed somewhere in the distance and with weird interests, we were on the outer.

 

But home was different. My mother built a safe place for us, just like her mother had before her. Our interests were encouraged, our sensory challenges accepted as totally normal, and we were taught to read ourselves — in our responses to situations and stimulation, and in our anxiety. We were taught that all of this was just us. And that we were fine. The rest of the world may be weird, but home, and us, we were the sane center in an incomprehensible world. My autistic pride honors that upbringing.

Everything I am good at, all my learned skills — in particular, social and emotional skills — my acquired academic knowledge, and my hobbies and interests have been filtered through my brain. My autistic brain. And I love my brain. I’m damn smart, too. And all of those things are mediated by my autism. My drive to systematize, the ability to deeply focus on details, my drive (compulsion, really) to learn and assimilate information, my extreme empathy — and my creativity — are heightened because I’m autistic. I am so sick of the deficit model! Yes, my anxiety isn’t removable, my sensory processing is out of whack, and I’ve got quirks galore that Must Not Be Ignored. But I am a better person knowing my autism and learning to live with it. And I’m damn proud!

Now, here’s the nota bene, the coda, maybe even the mea culpa I am expected to add. Autism has its challenges. Some experiences are different because of how autism manifests in some people. All of us struggle at some level with anxiety, social skills and managing the demands of life. But these are characteristics, not autism itself. In a perfect world (Ha!, Oh, I know!) we would all have access to the right supports to allow us to function like everyone else. It’s not the autism, it’s the response of other people that undermine our abilities.

I am really starting to wonder how far we’ve come if I have to make cogent arguments in favor of autistic pride, rather than just having it! After all, we live in a world where millions of dollars are being spent on trying to “cure” autism and autistic people out of existence. That’s why Autistic Pride Day is so important. If autistic people can’t be proud of who we are, how can we argue for our right to exist? How can we fight the “cure” fantasy and the tragedy line spun by others? This is our neurology. It makes me who I am. It makes us who we are. It makes us live, do, be, feel, experience, sense, love and learn differently. Not less. Just differently. I think that is worth feeling a sense of pride.

So — Happy Autistic Pride Day. Here’s to a better one next year!

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Thinkstock image by m-gucci

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Someone I Love Is on the Autism Spectrum

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The day my grandson received his diagnosis for autism spectrum disorder was an overwhelming day. On one hand, we were relieved that finally someone besides ourselves realized there was a significant developmental delay for him and we weren’t imagining it. On the other hand, we were such newbies to the diagnosis, we weren’t sure what happened next. That was over a year ago. He was/is considered nonverbal, and he has made great strides in the past year.

By all appearances, he may seem like many other 3-year-olds. He is rambunctious, adventurous and active. I get so frustrated when people say things like, “He doesn’t look autistic.” What exactly does someone look like if they are autistic? His engagement with others has improved in the last year as well. He can look at someone and interact with them.

We have learned when you meet one person with autism, you’ve met one person with autism. Everyone on the spectrum is different in how they act and how they interact.

When he wants something, he uses a combination of signs, words or visual supports to let us know what he wants or needs. It can be a challenge when he does ask for something correctly and we can’t give it to him. Maybe because it’s too close to dinner or too late in the evening for him to have ice cream or a sweet treat or simply because the answer is no. He might not fully comprehend the no answer, so he will use the signs “please” and “want,” and I have to say “no,” and he becomes confused. When he doesn’t have a word or sign to use, he grabs his book of pictures, and flips through until he finds what he wants and hands me the picture, along with the signs “please” and “want.” I am glad we have the pictures. They are a huge help for all of us. The problem is when he wants something and there is no picture, but he has figured out how to overcome that problem.

One day, he brought me his small picture book, flipping through the pages but still not finding the right picture. He left the room and returned with the larger book and once again went through over 200 pictures and still had difficulty. I told him I would go to the kitchen with him and he could show me what he wanted, but he was too fast for me. He came into the living room carrying a plastic bowl with spaghetti in it from the refrigerator! The most amazing thing to me is that he is undeterred. If pictures couldn’t tell me, he finds a way! There was a picture of pasta in his book, but it didn’t have sauce on it, so he might not have realized that was the same. There is now a photo of spaghetti in the book for when he wants something like that again.

Every day, he amazes me. I love when he stims. It is exhilarating to him and he does it when he feels overloaded. He loves to spin around and around to the point where I can’t watch because I get too dizzy, but he just plops down on the floor, giggles and does it again. He also does a lot of jumping on his tot-sized trampoline. He is full of energy from the time he awakens until he finally fizzles out. One minute he can be running through the house and the next minute, he is fast asleep on the floor.

 

If someone in your family received an autism diagnosis, learn all you can to provide help and support. All of us have struggles we face daily, and some of us need extra help in some areas. We all dance to our own beat, regardless if we are on the spectrum or are neurotypical. Live life to the fullest every day. Don’t sweat the small stuff.

Our grandson has autism, but for us it doesn’t define him. He just looks at the world a little differently than we do.

Boy wearing a striped shirt, sitting in a chair indoors

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Why Conversation Can Be Hard for Me as a Person on the Autism Spectrum

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Most of the time, the main struggle for me is simply getting on with other people. Ideally this would be quite easy. This is mostly because of the importance placed on getting on well with others. It is not always easy, though. Typically it is possible for me, but other factors get in the way. There have been many occasions when I would have quite liked to converse with another person, perhaps in a spare moment. But the strain of everyday function always manages to get in the way.

If so much time was not spent worrying about where I was, what I was hearing, what I was seeing, I could do a much better job of starting a conversation. There is also the issue of considering what it is I could do to interest the other person. The automatic thought is that I am not interesting and that I have nothing of real value to say. If anything is started, I find I deliberately scale back some of what I am saying for fear of boring the individual I am speaking to. This then means if a conversation is brought about, then I can be restrained. I am quite happy to listen to the other person, but when the time comes for me to respond to something, I give half an answer.

On the face of it, this may not seem too bad. At least a conversation is taking place, even if it is at an early stage. The issue is developing those conversations further. I can sometimes find that my restrained manner could be perceived as a lack of interest from the other person. This then means the conversations never go further than being used as a way of wasting time, and that the individual either loses interest in talking to me and also thinks I do not really care about talking to them. This is a shame because in a lot of ways it could not be further from the truth. When it is manageable, I like to try and talk to different people. This is not always possible, but when it is, it is positive, because it feels like progress. If I can end the conversation thinking it went well, I will be quite pleased. The trouble is that this takes considerable effort. It almost brings about fatigue. I have to move beyond the comfort zone of sitting quietly and just have a go saying different things to see what works. Sometimes this works well and that is always good; other times it does not work so well, and it always brings about an amount of worry afterwards.

 

This then contributes to the fatigue that can be felt after an off-script conversation or particularly busy day. Off-script is a good way of describing it. A lot of the time I prefer for most days to be near enough the same. I have a tendency to informally plan the day and then go about the day following what that plan is. These are never written down, but I always know whether a day is going comfortably or not. Going off-script refers to any moment where I may try something I am not entirely comfortable with. If I have had a quiet few days, I may try to create conversation with the people I meet throughout the day. Despite the difficulty it can bring, it can also bring incredible positivity. If I go a long time without talking to many people, I start to think I may be something of a failure.

This is therefore an issue that continues to go round in circles. In one sense it is something I would like to improve. In another sense I am quite happy to carry on in my own way. It is probably a case of finding some kind of balance between the two. I do not have high expectations when it comes to forming friendships; in a lot of ways I would be quite happy to have a small group of people to meet up with every month, and that would be quite enough. It is also something I do not feel that I can have high expectations of either. This is because I find I am near enough starting from nowhere. The one thing that does need to change is the way I appear to other people. With things as they are, it is not difficult for me to appear rude or perhaps unappreciative of other people. This is the main thing I would like to work on going forward.

So it is simply a case of working on the simple aspects of conversation. Just saying hello to people would be beneficial. The trouble with this is that I have only recently realized this is something done quite often, and it is out of being polite. Part of the issue was that I perhaps thought acknowledging someone in passing was only really reserved for friends, not just for people I half know. I am going to try to do a better job of this in the future. It may then be possible that I get on better and then end up enjoying day-to-day life more.

As I have said, as much as talking to people is difficult, it always feels like positive progress. So if I can manage to do better over time, I may find I will get on better with other people. This can help with enjoying life more, and it could also be a route into employment. That is part of where some of my bitterness with the way the world works has come from. One of the best qualities that an individual can have, it seems, is to appear a certain way. This opens up a lot of doors and can make life a lot easier. It is therefore an important life skill. Yet it is usually left to the individual to learn the skill for themselves. This then leads to a number of people, including myself, being shut out of mainstream life. So it is now time for me to try and do something about it.

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Thinkstock image by Rupert King

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