Realizing My Son on the Autism Spectrum and I Have More in Common Than I Thought

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I always try to understand my son Griffin and the unique and beautiful ways he views the world. I admire his passion and caring heart. He likes to collect things, like yogurt tops. He was starting to get quite a collection recently. He would rinse them and then put them in a cup, telling us he was going to use them for an art project. He’s also big on recycling, so I suggested that he start putting the tops in the recycling bin so they could be recycled into new tops. But I couldn’t help but wonder where the idea for his unique collection came from.

And then an idea hit me…

One night when we had some friends over, I looked up and saw this: my own unique collection of coffee canisters.

Collection of empty Folgers plastic coffee canisters on top of refrigerator

I had to laugh and realized that I had my own reasons for this collection. I wanted to share some of the ways I use these lovely canisters. As you will see I prefer Folgers Half-Caf canisters, but — you be you! — and use whatever canisters you like.

We recently had a leak in a sink. What to do? Use one of our nice bowls? Oh, hell no! Canister please!

Plastic Folgers coffee can underneath sink

What about a unique way to store toilet paper and keep thieves away. Canister please!

plastic Folgers coffee canister filled with toilet paper roll

A spoonful of sugar? How about a canister full of spoons! Canister please!

plastic Folgers coffee can filled with plastic spoons

Oh where, oh where do I put my wet umbrella? On the wood floor? No way! Canister please!

Umbrellas in a plastic Folgers coffee canister

Normally I wouldn’t put salt in my coffee but where does one put their sidewalk salt? Canister please!

plastic Folgers coffee canister filled with sidewalk salt

Well, I think this helps me understand where Griffin might get his unique collection ideas. Hopefully it gave you some ideas, too.

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Robert F. Kennedy Jr. Offers $100,000 for Proof Vaccines Are Safe

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On Wednesday, at a National Press Club Meeting, vaccine skeptic and chairman of the World Mercury Foundation Robert F. Kennedy Jr., announced he would give $100,000 to the first person who can prove vaccines are safe for children and pregnant women.

According to a statement from the World Mercury Project, Kennedy “will pay $100,000 to the first journalist, or other individual, who can find a peer-reviewed scientific study demonstrating that thimerosal is safe in the amounts contained in vaccines currently being administered to American children and pregnant women.”

In his book “Thimerosal: Let the Science Speak,” Kennedy argued that thimerosal – a mercury-based preservative added to vaccines, which has been reduced or removed from most vaccines used today – causes autism. The Centers for Disease Control and Prevention (CDC) asserts, “there is no link between vaccines and autism”; the research that originally suggested there may be a link has been repeatedly disproven, and the doctor who authored the study, Andrew Wakefield, has his medical license rescinded.

The CDC has maintained that there is no connection between thimerosal and autism spectrum disorder. Since 2003, there have been nine CDC-related studies, all of which have determined no link between vaccines containing thimerosal and autism.

According to the CDC, thimerosal was “removed or reduced to trace amounts in all childhood vaccines except for some flu vaccines” between 1999 and 2001. The thimerosal was removed was a precaution, a way to limit children’s exposure to mercury. Now, in 2017, the only childhood vaccines that contain thimerosal are flu shots packaged in multi-dose vials. Thimerosal-free shots are also available.

Last month, Kennedy made headlines after he said Donald Trump had tapped him to head a new vaccine safety commission. Following Kennedy’s statement, more than 350 medical and professional health organizations co-authored a letter to Trump with evidence of the safety of vaccines, stating “Vaccines are safe. Vaccines are effective. Vaccines save lives.”

Photo credit: Daniel Schwen

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What Helps Me During a Meltdown as Someone on the Autism Spectrum

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I was diagnosed as being on the autism spectrum when I was 15 years old. Back then, meltdowns were common for me. Even now, meltdowns can be hard for me to handle. What may have helped when I was a child doesn’t help as much as an adult. But over the years, I’ve learned what has helped the most and why.

When I was a child, I didn’t know what to do with myself when I was having a meltdown. I just knew I was upset. So the first thing I needed help with was finding the coping skills that worked best for me. This included strategies such as wearing headphones to block out overstimulating noises, stimming — a form of repetitive movement to self-soothe — in a safe way, and focusing on my breathing.

Once people helped me to come up with these ideas, I had the strategies. The issue is that during a meltdown, I can’t think straight. So I would forget to use those coping skills right away. This meant I needed help in a different way. I needed people to gently remind me to use the coping techniques. There were times I felt so upset, I couldn’t stop thinking about the issue that caused the meltdown in the first place. It helped when people reminded me of the situation once I’d calmed down a bit so we could work on solving the problem again. In fact, this is still something I need to be reminded of occasionally.

As I got older, I started to recognize on my own when I was beginning to have a meltdown. This takes a lot of self-awareness, which came with maturity for me. At this point, it helped to have a codeword or a phrase to say to others when I needed a break to prevent it. (Just make sure the people who need to know about it are aware.) Eventually, my parents and even close friends were able to figure out when I needed a break without me saying a word.

In the end, if I do happen to have a meltdown, the most important thing you can do to help me is be patient. Understand I’m not trying to be difficult. Once I’ve learned to use my coping skills, allow me the time and space to use them. And once I’ve calmed down, we can work on solving whatever issue caused the meltdown in the first place.

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What Helps Me During a Meltdown as Someone on the Autism Spectrum
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Why I Share I'm Autistic on Online Dating Profiles

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I’ll be going out on a date soon. I really dislike dating because it generally feels like an interview. I feel like I must make eye contact, be “bubbly,” ask a lot of intriguing questions, and more. I wish dating could be skipped altogether and that one and another could just automatically be part of each other’s routines as if they had been for years. Who am I kidding, though? There are some things set up by society that must be endured.

I met this person online and he already knows I’m autistic. You see, recently, I decided to state clearly on my online profile that I have autism spectrum disorder (ASD). Why? Well, it may give a potential neurotypical partner a chance to do a little research on the topic. Or, it may even attract other autistic people. ASD impacts every part of my being. If someone has an issue with that, I’d rather they not “apply.”

So, will I have to make constant eye contact when I meet this potential partner? I shouldn’t have to because many people with ASD have issues with eye contact (I am one of them), and hopefully he has done a little research or already knows that. Will I have to be “bubbly”? No, I shouldn’t have to because I am not that kind of person. I have a flatter affect and may not fit the stereotype of a neurotypical female… because I’m not. I have my own personality and way of expressing myself.

I’m so glad I decided to state the status of my neurotype online. It means I can be myself and not worry about “faking it until I’m making it.” That’s not for me, and never will be.

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Boy wearing yellow shirt and holding a sippy cup with a matching yellow top playing inside a wooden play structure.

What I Wish for My Son on the Autism Spectrum

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A wave of nostalgia swept over me as we drove past my 15-year-old son’s former daycare on a cold, dreary January day. It seems like just yesterday I was dropping off my boys (and most of my paycheck) to that glorious setting where they were cared for and loved. But those days have disappeared as quickly as the snowflakes hitting my windshield. As I lingered at the stop sign deep in melancholy,  I wished I could go back, if only for a moment.

I glanced over at my son, sitting next to me in the passenger seat, staring out the window. Although his face is now more mature, wearing glasses and in desperate need of a shave — the look on his face still seems the same. He appeared to be deep in thought, almost concerned, as he stared out the car window. And just like I did all those years ago when he was a toddler tucked safely in his car seat staring out the window of the back seat, I wished I knew what he was thinking.

I smiled as I pointed at his old daycare playground, “That’s where you used to play when you were little.” He looked in the direction of the playground but didn’t say a word. Then I recalled a wish I had in those early days. Every day as I approached that playground at pick-up time,  I wished that just once I would not find him playing alone. I felt that same ache in my chest as I did back then.

Pushing that ache to the side, I took another peak at my boy, who still hadn’t responded but was staring at the playground. I wondered if he was trying to remember when he played there and with whom. It was a long lonely time ago — for me.

I had so many wishes back then when I felt something was “wrong” with my son, but had yet to see all that was “right.” As I watched the daycare, the playground and my son’s childhood slowly disappear in the distance, I caught a glimpse of myself in the rear-view mirror. I had no doubt the wishful face all those years ago looked younger and less wrinkled than it does today. But the face staring back at me now is wiser, more educated and more aware.

Ryan and I spent the rest of the ride — as we almost always do — in comfortable silence, so my brain had plenty of time to reflect on how my wishes have changed over the past 10 years.

My wishes then:

For him to fit in.

For him to “be like everyone else.” (Most guilt-ridden wish. Ever. I’m sorry, Ryan.)

For “it” not to be autism.

For him to eat more than one thing.

For him to never need a haircut, his teeth cleaned or a strep test.

For him to talk to me.

For him to know how much I love him.

For him to connect with me.

For him to connect with his brother.

For him to tell me about his day.

For him to say, “I love you” just once after the 50 times a day I told him.

My wishes now:

For him to feel confident and comfortable wherever he is.

For him to be exactly who he is and never be anyone other than that.

For him to feel happy and loved.

For him to be accepted.

For him to find success, in his way, in his time.

For him to believe in himself as much as I do.

For others to take the time to see how fabulous he is.

For the world to be more accepting of different.

I wish I had know then what I know now.

I wish I could go back in time and realize my wishes then were my wishes, not Ryan’s.

Some wishes don’t come true. For that I am grateful. Because you see, most of those wishes I had for Ryan then weren’t really for Ryan, they were for me. Ryan did show me his love, even though he may not have said it. Ryan was connecting with his brother, he just didn’t connect the way I expected him to. Ryan was eating the only food his body would allow, not trying to be difficult. And dental cleanings and strep tests really do suck.

It’s OK to wish, and I still do. Today I make sure the wishes I have for my son are his wishes, because those are the only wishes that really matter, then and now.

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Creating a List System to Help My Children on the Autism Spectrum Learn Life Skills

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I am a single mum to three children, two of whom have a diagnosis of autism. Juggling the needs of my children takes time, patience and a well-structured tick list.

For my children, routine is not only fundamental — it is a necessity. The systems in place at my house are steps and guides on how to do tasks to make day-to-day functionalities less anxiety-provoking and promote a growing independence for everyone in the house.

The idea of these lists goes beyond simple routines. They are the safety net that make things work. They are the go-to when all else fails, and most importantly, they can be followed step by step, over and over — something I think we all appreciate.

Looking back, we have had a lot of formulated lists in place that have grown in complexity as my children have grown:

  • How to put clothes on, a step-by-step guide with clothing items pictured along with their order
  • How to tidy a room, which involves looking at the floor as well as the room at eye level
  • How to run a bath

It is amazing reflecting on the amount that has been explored in my home through “tick-lists” and reward charts. As my children grow, our systems are also becoming more sophisticated. The newest is “how to meltdown safely,” an idea taken from a recent Mighty post. We are in the process of trying to manage these difficult emotions in a way that reduces the stress quickly for the person experiencing the emotion.

Whether a life skill has to be learned or comes naturally, it is a necessary element of preparing children for independence and later adulthood. Applying “tick lists” to life tasks and emotion regulation works for us and gives us a structure to experiences that, without such structure, can be highly anxiety-provoking.

If anyone in our house finds structuring a task difficult, a simple “tick list” seems to be the simplest yet most effective answer. Now please excuse me as I must go write a “to-do list” for the day, complete with tick boxes.

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