9 Things I Have Learned About Autism From My Son

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I wish I could have found this article when my son was diagnosed with autism.

I wish someone could have been honest and blunt.

I have decided to share nine things that I, as a parent, have learned about autism. Everything in this list is formed from my own opinion. I understand if you do not agree!

1. There is no cookie cutter form for autism. Just like every “normal” person is different, so is every autistic person.

2. Autism can affect every moment of your life.

3. Autistic kids, even children who are nonverbal, are often more aware than they may seem. It may seem like they are not paying attention when, in reality, they are hanging on your every word.

4. People may stare at your family. Why does everyone stare? Are they curious? Are they being judgmental? I have just started staring right back.

5. My son has learned from various sources that he can use his autism as an excuse for poor behavior. We do not accept this. At home, he is treated like everyone else. Autism is not an excuse.

6. We have high expectations of our son, and we are going to do whatever it takes to help him get there.

7. A lot of kids with autism fixate on things and “obsess” on every aspect of these things. I know way more than I need to know about Super Mario, the Titanic and submarines lost at sea.

8. Just because my son is labeled as “high-functioning” and verbal, doesn’t mean we do not have challenges. We do.

9. There is not enough autism awareness. Too many people only have a vague notion of what autism is, and it is usually completely off. The spectrum is large, and there is so much that we do not understand.

Autism has become a part of my life.

I wouldn’t change it.

I love my boy with all of my heart.

I love everything that he is, and I love what he has taught me.

A version of this post appeared on themadmommy.com.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I Love the Moments When My Daughter With Autism Doesn’t Want to Hold My Hand

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Like many mothers, holding my little girl’s soft, ever-warm, pudgy hand in mine has always been a wonderful moment of connection. Those little digits, never far from mine, help when the walk gets too long, the road gets too noisy or just for that little bit of reassurance. From back ache from the height difference of walking with a toddler, to the “swing me, swing me” stage, to the steadying hand when learning to ride skates, that handhold has always been beautiful.

Added to this, the calm moments at bedtime when your sleepy little girl lies there yawning and drifting off while you stroke her hair rhythmically or gently brush the back of her hand, and you feel the grip loosen as she finally nods off. I feel it epitomizes childhood, reliance, peace, comfort and contentment.

I always knew one day the handholds would diminish, but I didn’t expect that to be for sensory reasons. The comforting stroke of her hair can be a huge irritation, the passing hug a meltdown inducer, and the hand-holding rejected when the mood takes her (Daddy gets no hand holds unless he has gloves on because he has hairy hands!). But it is not always this way, and I think it is brilliant that she is starting to understand her feelings and how she reacts to touch and sounds and smell, etc. She is starting to realize that at certain times, that stroke is not a comfort, it is an irritant — and no matter how hard it is for me to take, I know by her telling me to back off, she is in fact growing in knowledge and confidence with her autism spectrum disorder.

She has always loved soft toys as long as they have a smiley face, fleecy things, snuggly blankets, laying her head on the dog’s velvety ears — those things are still a huge comfort to her. She piles these fluffy creatures around her at nighttime, extended families of bunnies, large-eyed pandas, neon build-a-bears who snuggle around her, protecting silently, soothing motionlessly and comforting telepathically.

So at bedtime, she is wrapped in her fleecy star blanket and tucked in tight, snuggling her favorite toy, which has been her companion since birth, and lying peacefully while I read a bedtime story. I keep a hand there, on the bed just in case she reaches for it — and sometimes she does, hugging my arms so tight that it feels like she is a little curly-haired toddler once more. I love those moments, but I also love the moment when she is confident to know that the stuffed toys are better than my hand at that moment in time. On those nights, I don’t feel bad. I still kiss her forehead, I still whisper, “Night night.” I just ensure that the whippet sits on the sofa next to me so I can stroke his little head instead.

Follow this journey on Coloring Outside The Lines.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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12 Things I’ve Learned From Life With Autism and Mental Health Issues

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I have a diagnosis of autism and atypical schizophrenia. I have been dealing with my illness for as long as I can remember and my autism since I was born. These are some things I have discovered along my mental health journey which may assist others.

1. It can be common for people on the autism spectrum to also experience mental health issues. Mental illness may present differently in a person on the autism spectrum than in others. If you have a mental illness and autism spectrum condition, it is important that you, those who care for you, and your treating doctor and other health workers understand how your mental illness impacts you and how they can help.

2. Many people on the autism spectrum have something called alexithymia (also known as “emotion blindness”). This means they can struggle to contact the emotions they are experiencing. They might be extremely depressed and not realize it, instead thinking they feel “bad” but being unable to pinpoint how serious their low mood is.

3. As a person with mental illness and other issues, I’ve learned it is important to take responsibility for your own future. Nobody else can change your life for you. I’ve found positive change can only happen from the moment at which you decide to make it. You really can be the CEO of your own life. You are in charge of the decisions you make and the direction your life takes.

4. You are not alone — many other people will be experiencing similar things to you. You can meet others with similar experiences through getting involved in the autism and/or mental health communities. This can help you to value and respect yourself as a person with autism and a person with mental illness, in addition to connecting you with like-minded people. There are many groups on social media which may be of assistance.

5. Make use of difficult experiences by viewing them as teachable moments. This doesn’t mean to minimize or discount your negative experiences. Instead it means to reflect on any difficulties you have had and then ascertain what you have learned from them. This is a good way of building your resilience.

6. Independence does not mean doing everything by yourself. You can access support and be independent. Everyone needs help with something.

7. When life was very difficult, I reminded myself that “this too will pass.” I’ve found this is a helpful attitude and can be used when you are experiencing a mental health crisis.

8. Recognize that people with autism and people without autism tend to communicate differently. This does not mean that one or other style is “right.” Each style is valid. But be aware of this when dealing with non-autistic mental health clinicians, as they may be misinterpreting what you say. It can help to discuss this issue with your doctor or other mental health professional.

9. If you use a psychologist or psychotherapist, you may need to shop around to find one that works well for you. Understand there are different therapy models and some will be more effective than others. The relationship between you and your therapist is often more important than the kind of therapy model they use. Try to find a therapist who has some knowledge about autism and/or is willing and able to learn.

10. You may be prescribed medication for mental health issues. Remember that medication is not “one size fits all.” It may take a few attempts to find the medication that works for you. Be patient, because getting the right can one usually provide some good results. Record any side effects or anything else you notice that concerns you while taking medication and report back to the doctor who prescribed it. Even if you think you know best, discuss any changes you want to make to your medication with your doctor before acting on them.

11. Do what works for you. Find strategies to address the different challenges your illness and/or your autism present. It can take a while to develop effective strategies for everything you experience. See it as an ongoing learning process. You will build wisdom by using each method or strategy.

12. Finally, remember that you are amazing. You are strong and have been through some of the most difficult situations with a 100 percent success rate. Acknowledge your efforts and reward yourself for good progress.

still from film of woman smiling
Jeanette.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

Follow this journey on Jeanette’s website, and learn more about her new book, “The Guide to Good Mental Health on the Autism Spectrum,” here.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Blue Man Group Promises More Sensory-Friendly Shows for Kids With Autism

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Blue Man Group announced on Monday that they will continue their partnership with Autism Speaks and host a set of sensory-friendly shows suitable for children with autism in five major U.S. cities over the next year.

“Creating a version of our show that is more accessible for families affected by autism has been a very meaningful experience for us,” Phil Stanton, Blue Man Group co-founder said in a press release. “We are thrilled to provide a safe and welcoming environment and are often quite moved by the emotional response to the show.”

To make the show more sensory-friendly, the performers will reduce sound and light levels, make headphones available and limit the amount of direct audience interaction. Blue Man Group will also have calm and quiet environments in the theater’s lobby for families who might need a break from the show.

“We are overjoyed that Blue Man Group is continuing their partnership with Autism Speaks,” Peter Morton, Autism Speaks vice president of corporate development said in a statement on the Blue Man Group website. “This is an initiative that not only raises funds and awareness but also provides families with the unique opportunity to experience Blue Man Group in a setting that meets their needs. We are grateful for this commitment to the autism community.”

Sensory-friendly performances will take place in the following cities:
Las Vegas: Sunday, June 12
Boston: Sunday, June 26
Chicago: Sunday, Oct. 2
New York City: Saturday, Nov. 5
Orlando: January 2017

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Don’t Feel Sorry for My Autistic Child

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I have four daughters. Two are autistic. Sometimes throughout my travels in life I encounter some people who I need to explain my girls autistic behavior to — because maybe they don’t understand. It could be at the library when someone is too loud and my daughter gets upset and covers her ears. Maybe it’s at the beach when she gets wet sand on her legs and begins to have a meltdown because her sensory tolerance is just lower that day. Or it could even be on an extra hot day out and about and she’s just not coping. When I explain to onlookers that my daughter(s) are autistic, I often get the response, “Oh, I’m sorry” or “Oh, that’s a shame” or “Oh, that’s sad.”

I just want to explore these comments.

OK. Having a child who is autistic can be hard. There are often times when it is so hard that you don’t know if you can handle it. But you do because you’re a parent of a child, and that means loving them unconditionally. Autism forces you to find other ways of doing things, it makes you aware of things you may have never considered before, it enables you to find a patience, tolerance and compassion for your small person that you never really thought was possible beforehand. You want them to grow up in a tolerant, understanding and loving world. So you model this as often as you can.

So yes, it is hard. I will not deny that.

But having an autistic child is not a death sentence. It is by no means the worst possible thing to happen to a parent. It does not mean your life is over. It does not mean their life is over. So you can shove your pity, your sadness and your condolences. I don’t need them; and my girls and their sisters and my husband don’t need them either.

I’m grateful for my autistic daughters.

They’re loyal. They will stand by you, even when you’re a flakey friend. They will root for you when others bail. They will continue to love you even when you’ve been an a**hole. They won’t judge you without real reason, and if you’re lucky enough to be their friend they’ll embrace you and love you for being you. They’re forgiving, and they won’t let you down.

They’re  intelligent. They have so much knowledge to share with you. It could be one of their few (or many) special interests, or it could be learning new things together. They have a thirst for knowledge, and if you take the time to find out what ticks their motor and find out how they learn, you’ll find your world becomes so much richer because of it.

They’re diverse and interesting. I bet you’ve never taken the time to ask an autistic person with a method for the way they eat things in a certain way, why they do it that way. I am sure you’ve never really noticed the reason someone who is autistic may wear sunglasses a lot is because they’re sensitive to light and sunglasses enable them to be more comfortable in social situations. I doubt you’ve ever made the realization as to why someone who is autistic really loves circles because they’re smooth and concentric, and this is reassuring. People who are autistic are fascinating to spend time with and have diverse interests and preferences. Not only do they perhaps like things a certain way, but once you spend time with them you realize it’s actually perfectly OK to have these preferences. Autistic people will expand your level for tolerance and color your world.

So don’t feel sorry for my autistic child.

Follow this journey on GirlTribe.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My Son With Autism Wore Bright Orange Headphones at a Play Area

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We slid the headphones on, and his whole body relaxed.

Tension we didn’t even realize he had vanished. He looked up, alert and interested with shoulders pushed back instead of hunched. He seemed taller, stronger. He was also the only kid wearing bright orange headphones in the play area.

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Kitty’s son.

I hadn’t realized how much the noise had bothered him and how much he’d endured. The edginess he usually had in crowded, noisy spaces was gone. He was swimming through the crowd and heading towards the climbing equipment. He threw a quick smile back at us before he commenced climbing. He was determined and he looked happy.

We were in shock.

He loved play areas. He loved climbing, spinning and hurling himself into ball pits to be buried over and over. But there was always a cost. We always watched for the moment when the scales tipped from engaged to overwhelmed, so we hovered around him like dragonflies.

Not on this day.

He’d mentioned noise a few times but in different contexts. Sometimes he wanted things louder, sometimes softer. We couldn’t find the sweet spot, and he’d get frustrated trying to articulate it. We bought the headphones as a shot in the dark. They were fluro orange because that was his favorite color. Plus, it had overtones of construction sites, another plus for a 5-year-old boy.

He didn’t see the stares and the eyes following him around. We were proud of him — this boy who’d found a way to negotiate his circumstances and turn a world that he loved into one he could take part in without pain. For now, at least.

He gracefully moved through crowds of children, skipped around belongings scattered on the floor and took his place in line for the giant slide. He waited peacefully, occasionally guarding his position from opportunists and sometimes hurrying to catch up when the line moved. He waved me over to “come down the big slide!” The girl in front of him spoke to me when I showed up: “Why is he wearing those?”

“Why don’t you ask him?” I redirected.

She took a breath and looked in his eyes. He was just a boy wearing headphones. “Why are you wearing those?” she asked him.

He pointed to his shirt, eyebrows lifted. She shook her head, giggling. “The headphones!” she said. “Why are you wearing headphones?”

“It’s noisy,” he replied in a loud voice due to the headphones. “I hear all the noises. And now I don’t.”

I never knew he heard all of them. Maybe he couldn’t concentrate enough to tell us.

The girl nodded, “Wow, you’re like a superhero!”

He, of course, enthusiastically agreed. They went down the slide together. My boy took this very seriously and made her wait while he counted to three. They whooshed down the slide and then he’s gone, disappearing into a field of primary colors and giant balloons. He’s busy.

He has superhero things to do.

Follow this journey on Playing With Fireworks.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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