We Need to Listen to -- and Believe -- Our Autistic Loved Ones

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So you’ve started dating a girl with autism? So you just found out your son is on the autism spectrum? So you learned all of those times you felt stranded in a world that doesn’t make sense had to do with your “not-so-typical” brain?

You’re lucky you ran into me!

My mom, my brothers, some of my sons and a few of my friends all landed in various places on this broad spectrum.

You are lucky. I’m guessing you know this, but I want to reiterate it anyway. I, myself, took too long to understand it.

The world needs us to have the kinds of conversations that are encouraged by the challenges of autism. I don’t mean to glorify or belittle or romanticize the challenges; they are real and they are hard. But almost all of them are the result of a society that is uncomfortable with “chaos” and “inconvenience.” Only a few of them are actually because of autism itself.

Sadly, I didn’t know this. I assumed my mom and my brothers were asking too
much of themselves and the world, and that the world (when telling them
to stop being themselves) must be right. After all, there is so much more of the world than us! How could it be wrong?

But I had children, and they stimmed, pulled away from certain types of touch, remained nonverbal for a long time.

By the time I was a mom, my brothers had already proven the ever-doubting
world and me wrong, time and time again. My mom had patiently showed me, taught me, believed in me until I learned to know in what ways I was wrong. By the time I was a mom I was ready to step up and explain things to the world.

I started by admitting my own cruelties. That was sometimes hard but always easier than justifying and defending them. Then, I asked the people I love what was going on in their minds and — this is key — I believed them. When my mom and brothers used to try to tell me about their experiences, I mostly entertained them with nods and pats on the head. Secretly I thought they were being dramatic, not trying hard enough or just plain not smart enough to make sense. I could give you specific examples (I have many!) but suffice it to say, I was “nice” on the surface and saw them as “other” on the inside.

But my sons? I couldn’t do it. I had to believe in them and be interested in them and truly listen when they told me things. Whether they communicated by moving away or toward things, or eventually with words.

Because the world looks, smells, feels and tastes different to everyone, and especially for our autistic loved ones, it’s important to trust them to tell us how they feel, what they see, who they are, what they think. It can be hard to understand (my one brother used to complain about all the “poo flakes” flying at him when I asked about his flinching, and my other brother doesn’t have much language so I’ve learned to listen to his energy and motions), but it’s more than worth it. We all become better people when we learn to do this everywhere in our lives.

Because of my brothers, and especially because of my mom (who adopted my wonderful brothers despite everyone telling her they were unlovable), my life is better and my eyes are open in beautiful ways. I’m kinder, smarter and busier sharing wonderful things instead of hiding away from possibilities.

I’ve learned to listen when people take the time to share their experiences, and to believe them. Sounds simple and obvious, right? Yet pay attention. Most of us assume we know what other people should feel, we challenge their experiences by telling them, “That’s not right, that’s not what it is.” We do this easily and consistently, and it’s dangerous and sad.

So you’re lucky you ran into me! Take a deep breath, and when the world looks at you or your son or your girlfriend or the neighbor girl with judgments, anger or pity, try to respond with a kindness and a teaching. Not always, but when you can. I’ve learned to do this (for the most part), and it’s been enlightening! Often people shift when I’m willing to smile and offer a kindness. And when they don’t, I go ahead and give them the benefit of the doubt. Perhaps they thought about it later and will be less judgmental next time. Goodness knows I’ve gone home and thought about things only to grow kinder for the next person!

The weight of the world is not on your shoulders entirely, new friend, so don’t feel obligated to always take the time to teach or encourage a thoughtful reaction, but you have been gifted with a unique opportunity. Take advantage of it in creative and comfortable ways!

You’re new to autism, which means you’ll be interested and curious to learn from others. That’s great! Please know: The professionals will try to be helpful, but listen first to your autistic loved one. The professionals are lovely but not always right. And when they are right, when they do believe in unlimited possibilities and putting the goals and motivators of the autistic individual first, when they do prove their ideas and actions are effective and kind, hold onto them and learn with them. Those gems of support are your best bling.

While you’re here and we’re chit chatting, I want badly to tell you about all the things my mom does that can help. I want to tell you about my book that is a collection of stories starring parenting and autism. I want to tell you to hire my mom, watch her shows, read her books.

And here’s the thing: So many of us are going to tell you that. You will meet so many wonderful well meaning people with the perfect book, the perfect therapy, the perfect vitamin, the perfect-whatever. I suggest you listen to them because they have experience, and you don’t need to figure it all out alone. But always, always, always take time away from their opinions to think about how it resonates for you and your family.

Your beliefs. Your girlfriend. Your son. Your neighbor.

And also, friend, take the time to consider what beliefs or motivators you might have that are, in your own way, hurting your chances for a valuable and successful experience.

It will surprise you sometimes. We are creatures of our environment, and the environment is imperfect. That’s OK, because we are also creatures of power, and you can make changes. Invest in your happiness and agency.

My brothers are now my friends. My sons are my treasures. My mom is my mentor and kindred spirit. My life is diverse and unpredictable and filled with magic and miracles!

Because of my struggles with society and self, I’m able to share these learnings with you and hopefully save you some hardship. I’m able to explore my mistakes and see they are indeed valuable.

I see that it’s also me who’s lucky.

I’m lucky I ran into you.

Thank you, friend, for exploring our luck with me.

The Mighty is asking the following: What is the best advice your mom gave you while growing up with a disease, disability 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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To the Moms Who Love Someone on the Autism Spectrum

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To the moms who raise a loved one on the spectrum,

This weekend is Mother’s Day, and I wanted you to know how important you are to your child. You may not know it, but simply by being there for them you are making a huge difference. I know this because when I was growing up with autism my mom helped me through some of the hardest moments in my life…

When I was completely nonverbal (up until I was 2.5), my mom was there.

When I was diagnosed with autism when I was 4, my mom was there.

When educators in my schools couldn’t understand why I was lashing out, my mom was there.

When I started school my mom was there.

When I had to move to three different public schools in four years, my mom was there.

When I came home crying from school for not only being bullied but having difficulty with that transition, my mom was there.

When we fought our school district for two and a half years to get me an out of district placement for students with learning disabilities, my mom was there.

When I needed someone to drive me to school, my mom was there.

When I found my strengths, my mom was there.

When we finally found the therapies that worked best for me, my mom was there.

When I made my first friend and ran home to tell everyone, my mom was there.

When I graduated from grade school, my mom was there.

When I was struggling with taking the SATs, my mom was there.

When I graduated from high school, my mom was there.

When I was nervously waiting for an acceptance letter to come to our house to see if I got into college, my mom was there.

When I graduated with my undergraduate and master’s degrees, my mom was there.

When I received my first full-time job offer, my mom was there.

When I had any self-doubt in my ability to achieve great things, my mom was there.

When I succeeded and overcame the obstacles that challenged me when I was younger, my mom was there.

To the moms out there who love someone with autism, I hope you realize the impact you have, like my mom had on me, simply by being there. 

I love you, Mom!

Wishing all the amazing moms out there in our community a Happy Mother’s Day!

This blog originally appeared on Kerrymagro.com.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! 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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Carly Fleischmann, Nonverbal Woman With Autism, Interviews Channing Tatum

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Carly Fleischmann is nonverbal, but she’s become the voice of autism awareness. The young woman, who uses a communication device, gained notoriety when a video giving insight to how she processes the world went viral in 2012. It’s since been viewed more than two million times, and brought well-deserved attention to her book “Carly’s Voice.

Four years later, Fleischmann has launched a web series “Speechless with Carly Fleischmann,” which she hosts. In its first episode, released on Friday, she sits down with actor Channing Tatum to discuss growing up, his marriage and his greatest fears. It’s a wonderfully entertaining interview in and of itself, and we hope it will do wonders for spreading awareness for people who use alternative methods of communication.

h/t Kerry Magro

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Local Bars Boycott 50 Cent's Vodka in Response to Video Mocking Autistic Man

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Rapper 50 Cent is under fire for mocking a man on the autism spectrum in an Instagram video.

In the clip, the rapper, whose full name is Curtis Jackson III, suggests Cincinnati/Northern Kentucky Airport employee Andrew Ferrell is high on drugs.

“Listen, the new generation is crazy,” the rapper says in the clip, which has since been removed. “Look at him. What kind of [expletive] you think he took before he got to work today? He high as [expletive] right here in the airport. His pupils dilated and everything…”

Ferrell, a 19-year-old who has Asperger’s syndrome, told Fox19 the experience was weird, calling the rapper “a jerk” and questioning his motives for doing it.

“To put this video out there saying my son is on drugs or whatever, that is part of his social anxiety,” Kent Ferrell told WLWT. “He’s not wanting to talk, he’s not wanting to communicate, he’s walking on and he’s doing his job.”

The community has begun to respond to the rapper’s behavior and lack of awareness, coming to Ferrell’s defense. Cincinnati bar Holy Grail Tavern & Grille announced it would boycott the rapper’s liquor brand Effen Vodka. Since then, at least five other businesses have joined the boycott, according to WLWT.

Update May 3, 7:24 pm: Curtis “50 Cent” Jackson said the following to The Mighty in an email:

While the incident at the airport resulted from an unfortunate misunderstanding, I am truly sorry for offending the young man. It was certainly not my intent to insult him or the disability community, which is a source of great strength in America. I have apologized personally to him and his family. 

Update May 5, 11:05 am: Curtis “50 Cent” Jackson said the following to The Mighty in an email:

“I want to turn this misunderstanding into an understanding. There are people that are ignored, mistreated and neglected with disabilities that need our support. Today, I have made a donation of $100,000 to this worthy cause through Autism Speaks. I am calling on my fellow musicians, actors, entertainers and all others who may not have fully considered this cause to join together to help in any way they can.”  

If you are unfamiliar with autism, educate yourself and help spread awareness. Here’s a good place to start:

 

 

 

 

 

 

 

 

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What This Autistic Mother Wishes Social Workers Understood

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Dear Social Worker,

Please understand that when you are dealing with an autistic child, you may also be communicating with an autistic parent.

Misunderstandings can happen with any parent, but when a mother with autism is being misunderstood…

You may interpret her communication as obstructive when she has a social communication disability. She is doing her best. When you are starting to “get your back up,” please stop and rethink and rephrase.

You may think she is aggressive and shouting. She may struggle to moderate her tone of voice, and may lack some self-awareness, particularly in times of great stress and anxiety when her adaptive skills are lowered.

You may think she is not engaged with you and not seeming to take an interest in what is happening in the meeting. That mother’s whole body — how she feels, sees, hears and smells her environment may have reverted to a basic “fight, flight or freeze” protective mechanism.

You may think she is overly focusing on the disability of her child. That mother might be reading everything she can find, doing more research and asking more questions than what some professionals may find comfortable. She is trying desperately to help her child and find answers. And maybe, she took very literally the advice you gave her to “give an example of the worst day.”

You may think she is overly controlling when she tries in vain to control her situation. She may not know the hierarchy of the system — who can and cannot be useful, who can or cannot make decisions, who is or is not influential.

You may think she will not accept help offered, and is not coping, because she has not been told the processes with which she needs to engage. The uncertainty of not knowing what is coming next, how long it will last, or what her role is can be overwhelming.

You may think she has not formed a strong maternal attachment to her child, when she knows her child. She knows how they need time to process their own pain. She knows when her child is overloaded, the worst thing she can do is to touch and give additional input to her child.

You may think a lot. But the facts are, nearly half of dads with an autistic child will have autistic traits themselves. Girls are referred for an assessment far less often than males, and in the U.K. over 80 percent of general practitioners admit to not knowing enough about autism to feel comfortable making a referral.

infographic about autistic moms. Info is contained in text.

There are families right now that need you to listen and “do.”

Do become aware of how women with autism may present differently than men.

Do give her any paperwork at least three days before a meeting.

Do make sure meeting rooms are comfortable and sensory-friendly.

Do give her natural light.

Do give her a position where she can see who may be walking behind her.

Do give her a flowchart of the system, and show her what stage she is in.

Do make your communication clear, concise and without hidden meanings.

Do tell her who will be working with her, their role, their limitations and what they can do to help her.

Do allow a trusted friend or advocate to be with her.

There are many good social workers in the U.K. and beyond working well with families. Be one of them.

Regards,

An autistic mother struggling to be heard

Learn more at Autism Women Matter.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

Lead photo source: Thinkstock Images

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Flying Under the Radar as an Autistic Adult With ADHD

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For as long as I can remember, I’ve always been a little bit different. In pictures from when I was about 3, I’m looking in another direction and fiddling with my fingers. In preschool, I was the hyper kid who did whatever she wanted to. I have vivid memories of playing in the Little Tikes playhouse while the rest of the class was sitting obediently, following what the teacher was telling them to do. I was a free spirit.

In elementary school, I remember trying to play with the other kids, yet something just didn’t “click.” They would laugh together, and it happened naturally. I would force a laugh and get strange looks. I got along with my peers, however there was still something that set me apart from them.

Next came middle school. The other girls were suddenly interested in things like their appearance and boys. These things never crossed my mind; I was simply uninterested in them. I had an undying passion for playing Sonic the Hedgehog. I was obsessed. I got teased for this, but I didn’t let it stop me.

High school arrived, and I was still much happier playing Sonic than giving a care about boys or what I looked like. Comfort took precedence, and I still preferred t-shirts and athletic pants over “girly” clothes. While the other kids sometimes gave me a hard time about it, I was confident in who I was and didn’t let it get me down.

In college, I continued to play video games while some of my peers started partying and drinking. I was working at the time, and in some ways, I stuck out like a sore thumb amongst my coworkers. A lot of them seemed to find perverted jokes funny, while they grossed me out. They would talk about how they’d go to clubs and stuff that I wasn’t interested in. They knew I was different, yet we all still seemed to get along, which was a plus.

As time went on after college, I began a quest to learn more about myself. I was content with who I was and didn’t want to be any other way. At the same time, I had questions that I needed to find answers for.

I was working at my first full-time job out of college and was doing quite well. However, I noticed myself repeatedly forgetting to do things like fill out my time card. I’d write things down and still forget. I’d been suspecting I had ADHD since I first learned of it at about 12, and now the proof was in the pudding. I went for an assessment, and sure enough, I had hit the nail on the head! I began to take medication and noticed an improvement between that and just being more self-aware.

A few years went by, and I had moved on to working at another agency. Things were going well, and I didn’t really give any more thought to looking for insight. I don’t remember how I came across it, but one day I stumbled upon a blog by someone who had something I remember hearing of in college that sounded an awful lot like “asparagus” to me. If you just thought of Asperger’s, that’s it! I knew it was on the autism spectrum but never had made any connection between it and myself, until now.

The author of the blog referred to herself as an “Aspie.” As I read, I saw myself. Could I be an Aspie, too? I found the author on Facebook and became friends with her. We talked a lot and got to know each other well (Seven years later, we’re still good friends!).

After talking to my new friend and doing a lot of research, I decided to go for an assessment. I went to the same psychologist who had diagnosed me with ADHD, and sure enough, it was confirmed that I was on the autism spectrum. I felt so validated. The pieces finally fit! I actually started my own blog highlighting my diagnosis story, and titled it “The Pieces Fit” to represent my journey.

So how I flew under the radar for so long, I will never know. What I do know is that awareness and knowledge about autism is always developing, as are diagnostic tools. While I sometimes wish I hadn’t flown under the radar for so long, I have faith that everything happens for a reason. I’m autistic and proud.

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. 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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