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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Why a Shower Is a Big Deal for My Son With Autism and Sensory Processing Disorder

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My son is brave.

He took a shower tonight.

A full shower. Head wet. With water coming out of the shower head. Warm water, not cold. A full body, hair washed, under the water, traditional shower.

He’s 8.

Imagine being on The Maid of the Mist at Niagara Falls. The Falls are deafening as you near them, so you plug your ears. The pressure, like an airplane, makes your eardrums feel like they will explode. The beads of water are rushing at you so quickly they feels like “stingers” on your skin. Your adrenaline is pumping — it’s amazing to be this close to something so deadly, so powerful.  You’re scared but excited.

The boat keeps getting closer, and suddenly you realize it’s out of control. You’re heading right for the falls — how will you survive? Surely it will kill you. It will make the boat crack apart like toothpicks — “panic” is putting this emotion mildly. The fear is overwhelming. What do you do? Jump and try to swim? You’ll be caught in a current and pulled under. Is there anything you can do? There are seconds left until your boat hits the falls and you die. Now what?

Dramatic? Maybe. But that is what a shower seems like to my 8-year-old boy with autism, sensory processing disorder and a few other diagnoses. The beads of water feel
like “stingers” piercing his skin. He’s never been able to get near it until today. Baths only.

As a toddler, his fear of water was relentless and came out of nowhere. Without going into excruciating detail, this is a huge moment for him. He doesn’t like sprinklers or swimming — he can only handle it for a short period of time, if at all. And never, ever gets his head wet.

All this changed tonight.

I’m not sharing these details to embarrass him one day, or right now. This is personal. For us and many other families.

He wants the world to know he “is just like” his big brother.

He wants other autistic kids, like him (because there is a huge spectrum), to know
they can do it too. When and if they are ready, “they can be brave too.”

He wants them to know he “did it!”

He is proud of himself, and he should be — I am afraid of a lot of things and don’t face them daily like he does.

Every time I think he has reached the end of possibility, the reality that maybe this is the most he will continue to develop, he breaks through his fears and goes further than we ever expected. He pushes his boundaries and exceeds expectations, not only ours but his own.  He never stops amazing us. He never quits, not in the long run. Even through the: “I’m scared, Mom! I’m a little afraid. OK, I’m a lot afraid! But I can do it!”

Not only did he conquer one of his biggest fears, he recognized his feelings about it (both before and after), and verbalized them. We adapted his experience: neon pink ear plugs, I helped wash his hair, towel nearby for water in his eyes, and his big brother was right there for support as needed.

So you see, my son is brave.

He’s scared doing most everything, every day, but does it. He beats the odds. He lives in a neurotypical world that is not friendly towards him, at all really. He is full of love and spirit and courage.

I told my son how brave he was and how proud we are of him, and he is proud of himself: “I did it! I took a shower like [my big brother]!” He jumped up and down, screeching, neon pink earplugs still in his ears. Right now, he is excitedly flapping so hard in his bedroom I can hear him in the living room while I write this.

A shower may not seem like a big deal to most people. But to us, it’s not just a shower. It’s endless possibility.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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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The Question I Kept Asking Myself After My Son’s Autism Diagnosis

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On August 2, 2012, my oldest son, Trenton, received the diagnosis of autism. I will never forget how I felt the moment I heard the words out of the doctor’s mouth. Dizziness and lightheadedness consumed my body seconds after hearing the words. At one point, I thought I was going to pass out.

I did a lot of thinking on our way home from the doctor that day. The majority of my thoughts were fear of the unknown. Nonetheless, one thing I kept saying to myself that day was, “How could we move past this life-changing diagnosis?”

Mother with children
Angela with her sons.

I spent a lot of time that day and the days to follow asking myself that. I began to ask myself those questions even more as time went on. Our lives were soon consumed with therapy five days a week. I was sleep-deprived and mentally exhausted, and our family faced new challenges in our lives daily.

The life we had before autism was gone.

However, what I did learn over time was that we could get past it, and we could have an amazing life. It’s just a different kind of amazing that we didn’t dream about until our son’s autism diagnosis.

It’s simply closing one chapter in our lives and starting another one. It’s closing the chapter of old dreams and old goals and making new ones.

Sure, it took awhile to get used to. There are days when I just wish we could do some of the things I dreamed about while I was pregnant with Trenton. However, as we all know, life doesn’t go the way we plan most of the time. It doesn’t mean you can’t get past your old dreams; you just have to start dreaming up new dreams that are suitable for your family.

If I could pass on any bit of advice to newly diagnosed families, it would be to stay positive. Focus on the positives that happen each day. As challenging as each day can be, there is something to focus on that is positive. Once you focus on the positives, you’ll be amazed at how you can look at your new life with an open eye and see the beauty that lies within it. You will soon realize your life isn’t over — it’s just the beginning.

Along with the positives, find other families who are similar to yours. I wouldn’t be where I am today without the support from my fellow moms and dads of children with autism. The comfort of knowing that others truly understand you and your life is a positive within itself. You won’t feel alone or isolated. You’ll can be part of a new community and have a new beginning in your life.

When I think back to August 2012 and the two years that followed that day, it was the most difficult time in my life. I was too focused on the thought of never being able to move past the diagnosis and the life I expected to happen. Nonetheless, when I accepted our life, it was just the beginning of an amazing new journey that I believe God gave me and my boys.

Follow this journey on Two Brothers, One Journey and on Facebook.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? 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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