As a communications professional and mother of an autistic child, I often am asked how to talk to a neurodiverse person. Let me assure you, I’m not an expert in this field. Just because I have a child on the spectrum and a degree in communications doesn’t make me an all-knowing spokesperson for neurodiverse people. Honestly, I consider it disrespectful to speak as if I have any deep understanding of what it’s like to be neurodiverse in a world that’s less than accommodating to differences. What I can do is share what I’ve learned from 16 years of living with and loving an amazing autistic person. He’s promised to fact-check everything I write, so you can be assured it’s been reviewed by a knowledgeable source. Joining me is Kelly Metzger, the mother of my son’s best friend (who also happens to be on the spectrum). In honor of Autism Acceptance Month, we’re going to get candid with what we wish other people knew about communicating with our kids. Say what you mean to say“When you speak to someone who is neurologically different, say what you mean and mean what you say,” suggests Ms. Metzger. “You don’t need to offer funny puns or flowery metaphors. You don’t need hyperbolic language or dramatizations. Use relevant wording to convey what it is you want or need or is important to communicate in that moment.” I concur with this tip 100 percent. Honestly, this is good advice when speaking with anyone, not just neurodiverse people. We’re all busy. Don’t waste someone’s time. As my journalism advisor always used to say, “keep it simple.” Don’t be sarcasticSarcasm can be funny to some people. Oh, the irony of a humorous dig. For others, sarcasm can be confusing, and it stings. “When someone can only grasp concrete language, trying to be comical at someone else’s expense just comes across as mean, particularly if the sarcasm is used in a group and the neurodivergent person doesn’t understand,” said Ms. Metzger. “Now they have become someone to laugh at in addition to the sarcastic remark.” This is something I struggle with personally. Anyone who knows me knows that sarcasm is my love language. Thankfully, my son not only gets my sarcastic nature, but he also has learned to engage in the behavior himself. I know I can joke with him because I am confident that he understands my irony. When I’m talking to someone for the first time – especially if I know they’re neurodivergent – I keep my quips in check. Practice some patienceI’ve gotten used to not being answered the first, second, and sometimes 53rd time I’ve asked a question in my house. Like Thomas the Tank Engine says, “patience is a virtue.” That’s certainly been true when communicating with my son. He may not respond as quickly as I’d like, but eventually, he processes my request and answers. “Communication is a challenging skill,” said Ms. Metzger. “How many times have you gotten into an argument or disagreement because of a simple lack of effective communication?” She’s not wrong. According to the science guys, a lack of communication skills is a leading cause of arguments within relationships. Since our brains all fire at different speeds, give people the time they need to respond to you. Likewise, if an answer flies out quickly that completely misses the mark, try again. Patience is key when communicating with anyone. Allow for Q&A timeRepeating a question back to someone not only lets them know you’ve heard them, but it also may be needed for clarification. Using questions as a teaching tool is highly effective. Instead of jumping to the conclusion that the person is being rude by asking you to repeat yourself, understand that they may need additional clarification to process your request. “This ensures there won’t be any confusion,” said Ms. Metzger. “This is useful in every form of communication because it leaves out room for grey areas and potential contention.” Be willing to explain againWhen communicating with a neurodivergent person, show them grace. That’s a good rule of thumb when talking to anyone. If the person doesn’t appear to understand, explain again. Find a different way to express yourself, because maybe you’re not being as clear as you think. Or, maybe it’s a topic you assume the other person knows as well as you, but they don’t. They may need some precursory information before they can engage in a meaningful discussion. Sometimes people view this as the other person being disinterested in what they’re saying. Step back for a minute. Don’t assume the world revolves around you. If you truly want to communicate with the person, you’ll be willing to explain as many times as it takes for them to understand your point. I must admit I struggle with this one myself. I have an autistic adult in my life who frequently responds to my conversation starters with, “Pardon?” Yes, it can be annoying. But getting past my own ego and being willing to repeat myself until he’s heard me is worth the effort. Put on your listening earsCommunication is a two-way street. Otherwise, it’s just a monologue. Remember when we suggested that sometimes neurodivergent people need a moment to process what you’ve said before they respond? Part of respecting their communication style means allowing them the time they need to express themselves (and making sure your listening ears are on when they do). “When your brain is wired differently, you see the world from a different perspective,” said Ms. Metzger. “(Neurodivergent people) can offer valuable insight your neurotypical brain just hadn’t thought of. If you don’t understand what they’re trying to communicate, ask questions and seek clarification.” Understand that behavior is communicationOh, the stories I could tell of all the times well-meaning people approached me when my son was younger (and having sensory overload in public) with their helpful suggestions for curbing his behavior. I could probably write a novel. Talk to any parent of a neurodivergent child and they likely have similar stories. What so many people don’t understand is that behavior is communication. Behavior is an essential communication tool for someone who is non-verbal. When my son was young and still struggling to speak, his behavior was his way of telling me when he was overstimulated or when he needed or wanted something. I understood it for what it was and would never have punished him for communicating with me the only way he knew how. To strangers, they just assumed my son needed a good spanking (and some didn’t mind telling me their opinions about it). It was exhausting educating ignorant people about my son’s communication preferences. “It’s important to realize that behavior is a valid form of communication, just as body language is and words are,” said Samantha Supernaw, a licensed clinical social worker with Heart and Head Healing. “When working with clients, sometimes I need to help them to better understand other people’s behavior to better communicate themselves.” You must learn to listen with your eyes and your gut instead of your ears, added Ms. Metzger. “Watch how they move through the world. Get to know what triggers them, what brings them joy. And talk to them. Just because they can’t vocalize with words doesn’t mean they don’t want to hear or can’t understand what you have to say.” Don’t infantilize themDon’t ever talk about someone in front of them as if they can’t hear or understand you. This is an ongoing problem across the disability spectrum, not just with neurodivergent people. “There is nothing worse than having someone talk to an adult who has limited communicative verbal skills and be spoken to as though they are in preschool,” said Ms. Metzgar. “Just because expressive language is lacking doesn’t mean receptive language is as well.” Don’t invalidate their perspectiveI hate to break it to you, but you’re not the authority on everything. Remind yourself of that when communicating with other people. The old ego can creep out when some folks realize they’re talking to a neurodivergent person. They somehow decide they’re “less than” and mustn’t have a clue about anything. Let me assure you that if you think like that, you’re wrong (and quite possibly a jagoff). Effective communication means trying to understand the other person’s perspective, even if it differs from yours. “Everyone is different,” said Ms. Metzger. “Every mind, every experience, every life. The way we walk through the world lends itself to how we view ourselves and the world around us. Each and every perspective is valid and worthwhile.” Don’t be an assholeI said what I said, and Ms. Metzger wholeheartedly agrees with the sentiment. There’s no point beating around the bush, either. Being clear and concise, after all, is an effective communication strategy. When someone already is marginalized because the world has deemed them to be different, they don’t need you to take your sour self out on them to boot. If you’re in a mood, avoid human interaction. If you don’t understand neurodiversity, educate yourself. What’s not acceptable is to be anything less than kind to another human being. Life is short. Don’t be an asshole. Go talk to a neurodiverse person todayTalking to a neurodiverse person isn’t difficult. I do it every day and am richer for the experience. Can it require a little more patience and kindness? Yes. Might you have to be willing to see someone else’s perspective, even if it differs from yours? Absofreakinglutely. But you know what? I promise it’s worth the effort and it will make you a better communicator. AuthorShari Berg has known she wanted to be a writer since she was old enough to hold a pencil in her hand. She believes everyone has a story to tell, and it’s her job to discover it. Shari owns The Write Reflection, a Pittsburgh-based copywriting and content writing company that empowers small business owners to wield the power of words.
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I was scrolling through my social media feeds, much as I do every day, partly for professional reasons and partly for personal reasons. I wasn’t expecting to see anything beyond the usual “here’s what I’m having for dinner” type posts or the political musings that seem to flood most every social media outlet these days. Social media, without a doubt, can be a great tool for promoting your business or just staying in touch with family and friends. But it also can be mind-numbingly mundane. My morning pass was proving to be more of the second variety until I scrolled past some words that seemed to jump right off the Facebook post and hit me squarely in the face: He apologized one too many times, and I realized he should not apologize for who he is, rather that I should apologize for thinking he should be anything but himself. Those words could apply to so many situations in life. For me, they immediately made me think of my own 13-year-old son, who was diagnosed with autism at the age of 3. We were fortunate in that his diagnosis came early in life, enabling him to receive the kind of crucial early intervention services that have made all the difference in the world. But then I got to thinking about all the things my son learns he must do every day to fit the norm society has set for him, and the reality of those words brought tears to my eyes. Why can’t he just be accepted for who he is? Why should he have to mold himself into the societal norms and standards just so others deem him worthy? Those 30 words caused me to take a long, hard look at my stance on how individuals with autism should be treated, and just how much conforming they should be expected to do. It wasn’t the first time I had wondered why the rest of society can’t learn to be more accepting. But it was one of the few times I felt so strongly about it that I have made it my new mission to push for more understanding and acceptance of those on the spectrum – to help others learn how to celebrate the beauty of neurodiversity rather than punishing it. I have Tiffany Hammond to thank for my newfound drive for autism advocacy. A lifelong Texan and mother of two children on opposite ends of the autism spectrum, she recently started a blog called 2 Dollops of Autism. If you haven’t checked it out, you don’t know what you’re missing. Run, don’t walk, right on over to her site and check her out. She also has a Facebook page. I asked Tiffany if she would share some of her most private thoughts with us concerning her autism advocacy, her two beautiful children, Josiah and Aidan, and the motivation that keeps her going when she’d like nothing more than to quit. “I decided to launch (2 Dollops) because writing helps me deal with my most intense emotions,” said Ms. Hammond. “I bottle things up so much that it literally hurts me and others around me.” She’s not just talking about the negative emotions, but also the positive ones. “I needed a way to let those out, so one day I picked up a journal and I didn’t stop writing until I filled three of them in a day.” Like other parents of children with autism, Ms. Hammond gravitated toward autism support groups. What she found was other parents who were struggling with the same issues that she had already gone through with her boys. That’s when she decided to take her knowledge and use it to help others who were struggling. “Then I started to make my own posts. People received them so well I thought maybe I could share more advice and tips, and maybe eventually my own story.” Glazing the Ham 2 Dollops of Autism isn’t the first time Ms. Hammond has blogged about her personal experiences with autism. Several years ago, she decided to get her proverbial toes wet by launching a blog she called GlazedHamm. While she shared some of her thoughts and experiences about autism on the blog, she admits she didn’t take it seriously, neglected it on most days and didn’t own the content she was posting because it was being housed on a free blogging site, not her own domain. “I shut it down and a couple years later, decided it was time to start back up again. I promised I would take it more seriously because writing is my therapy. The challenge in creating new content to put onto a site is my therapy.” Thus was born 2 Dollops of Autism. Finding a Community Everyone needs their tribe. People who love and accept them. Others who know what it is like to struggle with the same things you do. Individuals on the spectrum often struggle to find their tribe, even among others who share their diagnosis. “The hardest part about finding a community is that autism exists on a spectrum, and so do their support groups,” said Ms. Hammond. “Then you have groups for those with severe autism, those for high-functioning autism . . . it’s hard to belong to just one group when so many address the many sides of autism.” While diversifying support for those on the autism spectrum based on severity can be a good thing in some respects, it also comes with its disadvantages. Ms. Hammond has one child who is classified with high-functioning autism, while the other is more severe, making the challenge of finding all the support she needs for both of her children in one place. “On one hand, the group that caters to your specific needs (i.e. severe autism parenting group) can provide you with a ton of support from others who are often drowned out in other groups, but then as a parent of a child on the moderate to high end of the spectrum, I often find many of their posts to be demeaning towards that end of the spectrum. Same with being in other groups and their comments towards parents of children with severe autism.” She hopes that her blog will provide the kind of support that applies to all parents of children with autism, regardless of their placement on the spectrum. From Shaun Murphy to Rainman While struggling to find a place among the autism community can be difficult, it can be even more so when trying to fit in among those who deem themselves as neurotypical. The hardest part about finding community support from the general public is that for the most part, the public's knowledge of autism comes from how they see autism portrayed in film and television, not from actual interaction with someone on the spectrum. With estimates of 1 in every 59 people having autism, Ms. Hammond said it’s hard to imagine that there is anyone out there who doesn't know someone who has autism. “I'm not one of those people who views the general public as purposefully unaccepting and unaccommodating. I think it's that they simply do not know what to do, they do not know how to respond. They don't know what kind of help and support that our loved ones with autism actually need. So they see someone like my oldest, who isn't like Dr. Shaun Murphy on “The Good Doctor,” and they don't know how to respond. They do not know what to do. They don't know what he needs. And it's much easier to ignore the problem than it is to address it.” As a result, Ms. Hammond said she believes there are many communities that are underserving this population. “And then you have those with autism like my youngest, who is more like Dr. Shaun Murphy than my oldest, but they still do not understand his kind of autism. They think it’s quirks and intense shyness. They assume that he will be independent, just as they are, because he is verbal and can do many of the things they can do.” Ms. Hammond said her youngest son’s challenges are written off, with the attitude from some that he should know better. “More understanding is given to my child who is severely impacted by autism than my youngest. The general public does not know what autism actually is, and once they do, they'll be better able to address it.” It is a large part of why she still supports autism awareness and not simply autism acceptance. Common Myths and Misconceptions There are a lot of misconceptions and downright myths when it comes to the general population’s understanding of the autism spectrum. “Not all those with autism are ‘Rainmen,” nor do they have some special hidden talent that will blow your mind,” said Ms. Hammond. Autism is a social-relational disorder, meaning there are deficits in how individuals with autism interact with the world and other people. “You do not realize how important it is for a human to engage with the world until you have met someone who chooses to not do so at all. How we develop biologically, psychologically, emotionally, and physically depends on our interactions and connections with other humans,” said Ms. Hammond. “Because of their autism, they have deficits in communication, relating to others, and forming connections.” One such misconception is that of individuals on the autism spectrum being unable to learn. For example, speech is learned by watching those closest to us and engaging with them. Those with autism are in their own world and they do not engage with others, unless it is on their terms. This can result in speech delays. “People need to understand that simply because someone with autism is delayed or severely impacted in one (or more) areas, doesn't mean that they cannot learn,” she said. “They can still develop these skills. Humans are lifelong learners, including those with autism.” One of the biggest myths about those with autism – and one that is upsetting to many on the spectrum – is the belief that they do not desire a connection with others. “Just because someone has delays or impairments doesn't mean that they do not exhibit any signs of connection with others,” said Ms. Hammond. “Those with autism can show love and emotion for others, they just show it differently. Treat them with dignity and respect, accommodate for their needs, address their deficits appropriately, build up their strengths, and accept them. They have feelings and they understand more than people think.” The Attitude of Gratitude Ms. Hammond doesn’t pull any punches when asked what it’s like to live with autism every day. “My attitude dealing with autism every day, all day, all year long? It's going to suck. It really is. It's also going to be beautiful as hell too. I cry so much, but I also celebrate so many successes that my boys have because I put in the work to get them there. It's okay to cry, to get frustrated, angry. I do all the time, but I don't live in those moments. I have work to do. I can't spend days crying in my room wanting to give up, but I also cannot neglect my own feelings.” Ms. Hammond said she allows herself to cry and be angry because she knows if she keeps it bottled up, she eventually will explode, which is not good for anyone. “So let it out. Take some time for yourself. Self-care is taking care of your children. Make sure you are carving out time for yourself. Then come back refreshed, ready to take on the world again.” She said she has come to the realization that autism is marked by periods of connection and disconnection. “You're going to have so many ups and downs, as are your children. If you spend every waking moment forcing them to enter your world, you're going to be met with pushback, and you damage their trust in you.” Instead, she has chosen to let her children lead the way, to enter their world when they leave hers. When they venture back into her world, she uses that time to work with them, building skills. “I don't embrace the waves as they hit; you get knocked down every single time. I ride the waves. I flow as my children flow, and I adjust often.” Mom, Advocate, College Graduate One of the most inspiring things about Tiffany Hammond isn’t that she’s raising two kids on the spectrum while spending countless hours helping others. It’s the fact that she doing it all while going back to school full time. Already in possession of a bachelor’s degree, she decided to pursue her master’s degree in Applied Psychology with a concentration in Developmental Psychology. She is on track to graduate this May. While going back to school was a challenge, she said technology helped out…a lot. “Colleges and Universities push to make education more accessible to more students – and probably to make more money – and opened up so many opportunities for persons like me to obtain degrees online. When I received my bachelor's years ago, there weren't that many online degree programs. But now, so many schools now offer online degrees. It wasn't hard for me to find a school with the program I wanted and jump right on it.” Ms. Hammond said she is able to learn around her children’s schedule, thanks to courses that allow her to test when she is ready and to turn in assignments whenever she chooses, so long as it’s before the due date. “This freed me up to attend to my children during the day and do my own schooling at night.” In addition to all that she already is doing for the autism community, Ms. Hammond also works as a volunteer advocacy ambassador with Autism Speaks. The position requires her to work with her local Congress members at the federal level to push through initiatives that are helpful to those with autism. A major part of their goals for this year is to get as many members as they can to join the bipartisan Autism Caucus and re-authorization of the Autism Cares Act, which is the foundation for all federal efforts surrounding autism. She also is working hard to get reform in Texas, a state she affectionately refers to as virtually dead in terms of care, supports and services for those with disabilities. “This desperately needs to change. There are wait lists for the Medicaid Waiver programs that are decades long. There is a push to enact policy that will reduce the wait list.” One measure she is focusing on heavily is enabling Medicaid to cover Applied Behavioral Analysis (ABA) Therapy, which is considered the gold standard for autism therapy. The passage of the bill will not only benefit her two children, but countless others across the state of Texas. Expanding medical marijuana laws also is a top priority for her, as well as increasing the pay for personal healthcare workers. “There are many, many issues with Texas and I am trying to address as many as I can, but I think if I spread myself too thin, they won't get the necessary attention that they need. So, I stick with a few at a time so that I can go all in on them. Once I graduate in May, I can focus a lot more on advocacy.” During the month of April – which is dedicated to autism awareness and acceptance – Ms. Hammond will be creating some Zines with her youngest son, whose creative mind will play an essential role in spreading the message of acceptance. The 2 Dollops of Autism blog also will include lots of tips and awareness items, not only this month, but in the many months to follow. ”I hope that through my site, I can help other families like ours see that not only are they not alone, but they can get through it, there's always light at the end of the tunnel, sometimes you just need the right tools to see it. I am there to help them find the light.” |
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