Maxine Share

@autismgoggles | contributor
Community Leader
I am determined to do my part to change shift understanding of autism. At present, we are judged by how well we can keep up with the expectations of the hyper-social typical world. I am a writer, advocate, workshop creator and presenter working hard to try to change understanding so that we can change the actions of those working and living with people on the spectrum.
Community Voices

What is something nice a stranger has done for you? #52SmallThings

<p>What is something nice a stranger has done for you? <a class="tm-topic-link mighty-topic" title="#52SmallThings: A Weekly Self-Care Challenge" href="/topic/52-small-things/" data-id="5c01a326d148bc9a5d4aefd9" data-name="#52SmallThings: A Weekly Self-Care Challenge" aria-label="hashtag #52SmallThings: A Weekly Self-Care Challenge">#52SmallThings</a> </p>
30 people are talking about this
Maxine Share

Why I Stopped Listening to the Naysayers About My Autistic Son

Many years ago, when a doctor confirmed that my son is autistic, there was little I knew for sure. But I was certain of this: Daniel was the same child he was before the identification. He was smart as a whip, gentle, patient, kind, and already, as a small child, a thoughtful and attentive listener. Oh — and he was a ham from the get-go, developing a love affair with the microphone at age 2 that seeded his public speaking career. For me, the name — it was Asperger’s at the time, now ASD level 1 — held hope of new ideas for helping him with the things he found difficult and begged for help with: social understanding, anxiety, sleep difficulties, executive functioning, sensory and motor challenges among these. I’d stumbled onto many things that helped, but these were rarely things shared with us by professionals. We were on our own to figure out how to help this wonderful little human being. We did it together, with me as the adult leading. As Yoda would say, “Always two there are…no more, no less.” I learned really quickly that there was little to no useful help out there — mostly because there was little to no understanding of autistics who were average intelligence or higher and could communicate with spoken language. In other words, if you can talk and can do the school work, they couldn’t care less about any “apparent” challenges. The needs just were not recognized, supported, believed, or respected by our systems of supports. No worries. As an autistic mother, I knew what I had to do, and I did it fully: I became a lay expert so I could help my kid. It became my mission. This is a common autistic trait, being able to do deep dives into areas of high interest, and there was nothing more compelling to me than helping Daniel feel calm, happy, safe, comfortable, valued and competent. Ultimately, I learned enough to be hired as an autism consultant with a large non-profit autism agency, write workshops, advocate, advise our education minister on special education, publish articles…yadda yadda…long story short: together, Daniel and I figured out what he needed and set about finding ways to get those needs met. Thanks to a handful of educators who were ahead of their time, our ideas were often greeted with curiosity and openness. I’m going to skip the 20 years from then until now, but will just say this. To those who thought he should never go to university, that he could never live alone, that the substantial amount of support he required through high school meant he would never be able to succeed, that the level of life skill support was unnecessary and unhealthy, that he should be in a self-contained special education class and not integrated with typical students: F you. My kid is the bomb. He has an honors degree in communications, an honors degree in social work, a post-grad in Children’s Media and a certificate from Wilfred Laurier University in Positive Psychology. Was it easy for him? It was not. The speed and the volume of the curriculum, and social and sensory demands presented a challenge. He embraced the accommodations he required in university, including things like note-takers, double time for exams, one exam per day maximum, clarification of exam questions, and having his therapy cat live with him in residence. It makes sense to continue with accommodations in post-secondary, right? If we are autistic learners, this does not change because we got older or because we have completed high school. Daniel needed what he needed to keep up with demands that were fashioned for typical learners. Through the years, though, anxiety has been the real beast. Autism is not a mental health diagnosis, but a lifetime of being misunderstood, feeling out of sync, being corrected at every turn, and having sensory differences ignored or poorly supported took its toll. When anxiety dominated, it was hard for Daniel to cope — and he was almost always very anxious. Anxiety hijacks the prefrontal cortex known as our thinking brain — and with it our executive functioning skills that allow us to organize, remember, plan, prioritize, manage emotions, manage time, and be flexible in our thinking — they can go bye-bye! This is what happened to Daniel. So you know what? We kept at it. I kept helping him by being there for his texts and calls, and saying what I hoped would redirect his freight train of negative self-talk from drowning out rational thought. I would help him to identify a next step, and then call me when that step was done. We kept looking for ways to tamp down the anxiety, and suggesting he take a mindfulness course was the start of a sea change. Finally, a portable, cost-free way for him to quell the unpleasant body sensations of anxiety. We have also continued, over the years, to find ways to accommodate and teach executive functioning skills that continue to challenge him. He continued to learn how to prioritize a to-do list, how to ask for help, how to say no if he had too much on his plate, and how, when, and if he would share his autism identification. He has spent the past 16 years teaching others about autism, and in doing so, has learned much about himself. Daniel is still the same child he was when we learned that autism helped to explain his unique way of learning, interacting with others, and experiencing the sensory world. The difference is that today, this smart, funny, patient, thoughtful listener is now a social worker, a published author, an accomplished public speaker, an autism advocate, a registered professional and an incredibly supportive son. In this year, maybe more than all the others, I am reminded of how blessed I am to have him in my life. In one of the most difficult years I have ever experienced (unrelated to COVID), he has flipped the script, helping me often to douse anxiety, figure out what I need to do next to get through the day, guide me toward greater goals, and help me when I cannot do it for myself. The young Padawan caught up with his mother. I could not be prouder or more grateful to have him in my life. Happy Birthday, Daniel!

Maxine Share

Why I Stopped Listening to the Naysayers About My Autistic Son

Many years ago, when a doctor confirmed that my son is autistic, there was little I knew for sure. But I was certain of this: Daniel was the same child he was before the identification. He was smart as a whip, gentle, patient, kind, and already, as a small child, a thoughtful and attentive listener. Oh — and he was a ham from the get-go, developing a love affair with the microphone at age 2 that seeded his public speaking career. For me, the name — it was Asperger’s at the time, now ASD level 1 — held hope of new ideas for helping him with the things he found difficult and begged for help with: social understanding, anxiety, sleep difficulties, executive functioning, sensory and motor challenges among these. I’d stumbled onto many things that helped, but these were rarely things shared with us by professionals. We were on our own to figure out how to help this wonderful little human being. We did it together, with me as the adult leading. As Yoda would say, “Always two there are…no more, no less.” I learned really quickly that there was little to no useful help out there — mostly because there was little to no understanding of autistics who were average intelligence or higher and could communicate with spoken language. In other words, if you can talk and can do the school work, they couldn’t care less about any “apparent” challenges. The needs just were not recognized, supported, believed, or respected by our systems of supports. No worries. As an autistic mother, I knew what I had to do, and I did it fully: I became a lay expert so I could help my kid. It became my mission. This is a common autistic trait, being able to do deep dives into areas of high interest, and there was nothing more compelling to me than helping Daniel feel calm, happy, safe, comfortable, valued and competent. Ultimately, I learned enough to be hired as an autism consultant with a large non-profit autism agency, write workshops, advocate, advise our education minister on special education, publish articles…yadda yadda…long story short: together, Daniel and I figured out what he needed and set about finding ways to get those needs met. Thanks to a handful of educators who were ahead of their time, our ideas were often greeted with curiosity and openness. I’m going to skip the 20 years from then until now, but will just say this. To those who thought he should never go to university, that he could never live alone, that the substantial amount of support he required through high school meant he would never be able to succeed, that the level of life skill support was unnecessary and unhealthy, that he should be in a self-contained special education class and not integrated with typical students: F you. My kid is the bomb. He has an honors degree in communications, an honors degree in social work, a post-grad in Children’s Media and a certificate from Wilfred Laurier University in Positive Psychology. Was it easy for him? It was not. The speed and the volume of the curriculum, and social and sensory demands presented a challenge. He embraced the accommodations he required in university, including things like note-takers, double time for exams, one exam per day maximum, clarification of exam questions, and having his therapy cat live with him in residence. It makes sense to continue with accommodations in post-secondary, right? If we are autistic learners, this does not change because we got older or because we have completed high school. Daniel needed what he needed to keep up with demands that were fashioned for typical learners. Through the years, though, anxiety has been the real beast. Autism is not a mental health diagnosis, but a lifetime of being misunderstood, feeling out of sync, being corrected at every turn, and having sensory differences ignored or poorly supported took its toll. When anxiety dominated, it was hard for Daniel to cope — and he was almost always very anxious. Anxiety hijacks the prefrontal cortex known as our thinking brain — and with it our executive functioning skills that allow us to organize, remember, plan, prioritize, manage emotions, manage time, and be flexible in our thinking — they can go bye-bye! This is what happened to Daniel. So you know what? We kept at it. I kept helping him by being there for his texts and calls, and saying what I hoped would redirect his freight train of negative self-talk from drowning out rational thought. I would help him to identify a next step, and then call me when that step was done. We kept looking for ways to tamp down the anxiety, and suggesting he take a mindfulness course was the start of a sea change. Finally, a portable, cost-free way for him to quell the unpleasant body sensations of anxiety. We have also continued, over the years, to find ways to accommodate and teach executive functioning skills that continue to challenge him. He continued to learn how to prioritize a to-do list, how to ask for help, how to say no if he had too much on his plate, and how, when, and if he would share his autism identification. He has spent the past 16 years teaching others about autism, and in doing so, has learned much about himself. Daniel is still the same child he was when we learned that autism helped to explain his unique way of learning, interacting with others, and experiencing the sensory world. The difference is that today, this smart, funny, patient, thoughtful listener is now a social worker, a published author, an accomplished public speaker, an autism advocate, a registered professional and an incredibly supportive son. In this year, maybe more than all the others, I am reminded of how blessed I am to have him in my life. In one of the most difficult years I have ever experienced (unrelated to COVID), he has flipped the script, helping me often to douse anxiety, figure out what I need to do next to get through the day, guide me toward greater goals, and help me when I cannot do it for myself. The young Padawan caught up with his mother. I could not be prouder or more grateful to have him in my life. Happy Birthday, Daniel!

Community Voices

Are Scholsl Causing Disability in Autistic Students?

Rant warning 🙂

While autism is not a mental defect or a mental illness, the attitude of our society toward verbal autism creates disability.

When you consider that disability is the distance between what’s required (for children with autism) to do well and what is actually provided, the statement makes sense, right? Our kids simply do not get what they need—especially in schools—to thrive.

In fact, our society lacks the will and is reluctant to provide sufficient relevant supports, accommodations, and resources to autistic students, and the lack of these at the school level often sets the stage for the child’s future. Verbal autistic people have sky high levels of anxiety and depression, unemployment, and social isolation compounded by difficulties navigating social relationships.

Why is this happening to such capable people?

It may be because autistic students do not receive the kind of education they need. :

* Disability is created when boards of education don’t provide life skills curriculum within the school system. Motor and learning differences often mean our children need this embedded in their daily education.

*Disability is created when assistive technology is not provided until the child is falling behind or falling apart. The system is reactive rather than proactive.

*Disability is created by having to cross our fingers, school year after school year, and hope that our child will have a teacher who understands autism, and will provide the hard won accommodations. Since general education teachers are not required to have autism education, that’s not a realistic expectation. Bluntly stated, every year is a crap-shoot.

*Disability is created by failing to provide social communication curriculum day in and day out so that this central feature of the autism identification is respectfully addressed. The only plan right now seems to be catching our children being autistic—catching them in so-called social missteps, then shaming and blaming them.

*Disability is created by not providing psycho-educational assessments to every autistic child. These assessments tell educators how our children learn. Without them, plans to teach are based on guesses considered through a typical lens. Without them, plans are often way off base, and guess who suffers the consequences? The autistic student is once again disabled by the laziness and indifference of the system.

Ergo, like I said: our systems of support are creating disability in our autistic children.

Discuss.

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Maxine Share

Common Signs of Autism in Women

Mothers of autistic kids: can we talk? Many of you have wondered aloud about your spouse. You say things like this: My husband can’t multi-task, has awkward social skills, and retreats to the computer or other special interest at every opportunity. He doesn’t know to help when there is lots to do (10 people are coming for dinner in an hour, the house is an awful mess and he is waxing the desk in the basement office). He is too tough on the kids, or He is way too lenient with the kids. What you’ve been wondering is, “Could my sweetheart be autistic?” Well, here’s something to really get you thinking — would it surprise you to know that your spouse may harbor the same suspicion about you? While autistic women may raise kids and run households, corporations, or marathons, female autistic behaviors may affect many areas of functioning. Autistic women may be smart, well-spoken, and can be highly-educated. They have lots of gifts and can be tons of fun! Still, there are a few things that can be a tad… trying… for a partner unless they understand where the issues are coming from. As we say, “change understanding — change actions.” These anecdotal issues can certainly impact family functioning as well as relationships with your co-workers or extended family. Here is my lay-person, non-scientific, nowhere-near-complete list of autistic female characteristics, tendencies and traits. It goes without saying that there are many more things we could add, and that you don’t need all of these to (potentially) be autistic — and you don’t need to demonstrate them all the time. On that note, recognize anyone? Autistic women may have a strong aversion to scary movies, scary music, psychological thrillers — anything that triggers the anxiety response. Alternately, they may love scary movies — nothing like a good terror flick on date night. Crying jags are common, especially when tired or hungry. Meltdowns and tantrums that were common in childhood can continue into her adult life — especially with sensory overload or too many expectations at once. Super, duper ticklish… someone could get hurt! Autistic women can have significant sensory differences. If I hear someone chewing and slurping, it’s not good. Let’s leave it at that! Hugs? Meh — sometimes, from some people — and those who are not “some people” need to back off. Crows? Forget it. Chaotic environments? Never. Executive dysfunction can be a huge issue for autistic women. The ability to prioritize, get started, manage time, and stay organized can be an ongoing and exhausting undertaking. Can be very resilient, as in able to reinvent herself or bounce back from personal setbacks or major life challenges. Autistic women commonly have lots of anxiety, and may be diagnosed with depression. She can be quite empathetic and intuitive. She may be very tuned to the emotions of others; if someone is not happy or is hurting, she can almost feel it. It really affects her mood. She may have a hard time keeping her emotions in check, resulting in socially inappropriate responses. Can have a hard time communicating how she feels, especially if stressed out. Can be unable to speak if overwhelmed with emotion. Can have a real problem asking anyone to do anything for her. Finds it really difficult to ask for help. May be blunt — too blunt, and then be surprised if people tell her she was hurtful or rude. She gives so much detail when she talks that she bores people and buries the main point. Writes lengthy, detail-laden emails that can overwhelm the recipient. Has a hard time figuring out what is important and what is less so. Non-autistics are often exasperated by this. Autistic women may expect immediate responses to emails; a late response is often a source of anxiety as she imagines the most negative reasons for the supposedly “late” reply. She cannot tolerate injustice — has a finely tuned sense of right and wrong. She makes a great advocate. She will not let an issue go until she feels fully understood. She might point out the mistakes of others, though she feels terrible if she is corrected herself. She can be highly artistic and creative. Talents in music and language are common. Unless appearance is a special interest, she will prefer a low-maintenance hairstyle. Often has really long hair. May have no fashion sense unless fashion is a special interest. May really need to control the routines in the household. May be happier in the home because she can control what happens there. Can be fidgety — twirling or chewing hair is common; may rock when sitting or standing. Sensory preferences can continue into adulthood. Intimacy can have sensory aspects that are really challenging (for example, “spooning” in the afterglow can feel like torture of 1,000 needles when combined with body heat and a partner’s chest hair). Autistic women may have sensory and digestive differences. They may be very picky eaters who don’t really know when they are hungry (or full) or thirsty until they are very hungry or thirsty. At this point, they may have very little patience. This is when we might see crying, meltdowns, or low mood. She often prefers to have one close relationship (often a spouse); may not have a close girlfriend, though she can have many acquaintances; prefers the company of her family. Dislikes work lunches and social functions. Grew up copying others to try and fit in. Never really liked the gossipy small talk girls engage in. Her best friend may have been a boy. May love fantasy books, movies, art — and may have had an active imaginary world as a child. Animation and anime art are a favorite area of expertise. Can have anxiety from being misunderstood all her life. Her words, tone and expression are often misinterpreted, and because she can misinterpret the nonverbal cues of others, she may misinterpret their intentions as anger or disappointment directed at her. If an autistic woman has to be overly social for a period of time, it can take her days to get over this. It’s a “social hangover.” Loves to spend time with her special interest. This can be reading, movies, art, crafts, couponing, social issues — or something entirely different. Interests can change quickly or be lifelong. Can be great at presenting to groups but unable to attend a party because of social anxiety. Can take things too literally and miss jokes, but have a great sense of humor herself. Can be highly disorganized and messy — or extraordinarily organized and tidy. She can be both: she may have an immaculate house and a very messy car. Has a difficult time juggling both home and work responsibilities — she may do a good job, but is highly anxious in achieving it. It takes a great deal of effort to keep up. Has a pervasive sense of dread that she is going to forget something very important and people will figure out that she finds her roles difficult. Can be highly expressive and emotional or withdrawn and unable to share feelings. Is sometimes accused of being cold and unfeeling. She’s not! Autistic women tend to be independent, determined, focused, talented, creative and empathetic. Can quickly become self-taught “experts” when they set their mind to a topic of interest. Autistic women have a higher risk of eating disorders — studies are suggesting nearly 30 percent of women with eating disorders are autistic or have autistic traits. Autistic women usually feel terrible if they feel they have done something wrong. If they are told they’ve done something incorrectly, they have a really hard time letting go of the reprimand. Autistic women avoid conflict like the plague — unless someone is threatening their cubs! Moms on the spectrum will often step way outside of their comfort zones in order to get their children what they need. Though autistic women avoid confrontation, they will often step up to protect the rights of others if they perceive something is unfair. They are finely tuned to social injustice and often want to save the whole world. That’s just a tiny glimpse into the world of autism and women from my lay perspective. What do you think? Did the apples stay close to your family tree?

Maxine Share

Why Psycho-Educational Assessments Are Essential for Autistic Students

Autism is not a mental illness or a mental defect. It is a unique way of learning and experiencing the sensory world. It has always astonished me how educators guess at what our autistic children need in the absence of any professional documentation regarding the learning profiles or sensory profiles of autistic students. A psycho-educational assessment has the potential to tell us exactly how our child learns, and pinpoint exactly where they are struggling. It can help support the essential need to supplement all verbal learning with visual supports, for example, or measure the degree of strength or struggle in the many areas of executive functioning that are so important in the school setting: working memory, organization, and task initiation, to name a few. Once we know what the challenges really are, appropriate and relevant supports can and must be provided. Sadly, very few autistic children are provided with these assessments. The same is true of sensory processing assessments. These are rarely provided within our school systems, and no one is telling parents of newly-diagnosed children just how important this assessment could be to understanding their child’s experience of their world. It is worth noting that the sensory differences of autistic children are not a sidebar to the diagnosis. Up to 90% of autistic children have sensory and/or motor differences that can be the cause of, or contribute to, their behaviors or emotional responses. It stands to reason, then, that if we don’t have a professional understanding of how a child is experiencing his or her physical/sensory environment, we will fail to make connections between coping behaviors, school achievement, and the child’s experience of the school setting. The many autistic children who are overwhelmed by the noisy, unpredictable sensory environment that is their school day may exist in a state of fight, flight or freeze while there, with educators completely missing the cause. Our children are instead characterized with unflattering editorial words: lazy, spaced out, rude, defiant, when all they were trying to do was protect themselves from a world that is Just. Too. Much. We must have comprehensive sensory assessments, along with psychoeducational assessments, when we are trying to figure out why an autistic child is struggling. If we don’t provide these assessments — along with professionals who truly understand the implications of the findings — I would suggest that any ideas we have to support challenges are just a crapshoot — guesses based on a neurotypical worldview. In my experience, so-called behavior issues are really “lack of understanding” issues and “lack of appropriate support” issues. It’s high time we started providing psycho-educational assessments and comprehensive sensory assessment to every autistic child so they can be taught in ways that work for them and in environments they can tolerate.

Maxine Share

Why Psycho-Educational Assessments Are Essential for Autistic Students

Autism is not a mental illness or a mental defect. It is a unique way of learning and experiencing the sensory world. It has always astonished me how educators guess at what our autistic children need in the absence of any professional documentation regarding the learning profiles or sensory profiles of autistic students. A psycho-educational assessment has the potential to tell us exactly how our child learns, and pinpoint exactly where they are struggling. It can help support the essential need to supplement all verbal learning with visual supports, for example, or measure the degree of strength or struggle in the many areas of executive functioning that are so important in the school setting: working memory, organization, and task initiation, to name a few. Once we know what the challenges really are, appropriate and relevant supports can and must be provided. Sadly, very few autistic children are provided with these assessments. The same is true of sensory processing assessments. These are rarely provided within our school systems, and no one is telling parents of newly-diagnosed children just how important this assessment could be to understanding their child’s experience of their world. It is worth noting that the sensory differences of autistic children are not a sidebar to the diagnosis. Up to 90% of autistic children have sensory and/or motor differences that can be the cause of, or contribute to, their behaviors or emotional responses. It stands to reason, then, that if we don’t have a professional understanding of how a child is experiencing his or her physical/sensory environment, we will fail to make connections between coping behaviors, school achievement, and the child’s experience of the school setting. The many autistic children who are overwhelmed by the noisy, unpredictable sensory environment that is their school day may exist in a state of fight, flight or freeze while there, with educators completely missing the cause. Our children are instead characterized with unflattering editorial words: lazy, spaced out, rude, defiant, when all they were trying to do was protect themselves from a world that is Just. Too. Much. We must have comprehensive sensory assessments, along with psychoeducational assessments, when we are trying to figure out why an autistic child is struggling. If we don’t provide these assessments — along with professionals who truly understand the implications of the findings — I would suggest that any ideas we have to support challenges are just a crapshoot — guesses based on a neurotypical worldview. In my experience, so-called behavior issues are really “lack of understanding” issues and “lack of appropriate support” issues. It’s high time we started providing psycho-educational assessments and comprehensive sensory assessment to every autistic child so they can be taught in ways that work for them and in environments they can tolerate.

Maxine Share

14 'Truth Bombs' About Raising Autistic Children

As an autistic writer, workshop developer and autism consultant, I get asked a lot of questions by parents and teachers. The most common request I get always makes me giggle just a little, and it goes something like this: ‘Tell me how to raise an autistic child.” I giggle because autism is simply a way of being human, so there is no prescribed formula for parenting or teaching an autistic learner. Having said that, there is information that is helpful, critical, even essential for parents and teachers to understand if their goal is to help grow healthy, confident, autism-proud children who believe in themselves. After all, autism is a unique way of learning, interacting with others, and experiencing the physical / sensory world. Anyone working with the kid must understand what this means for them. We must try to understand the autism culture through the eyes of the child before considering how to teach anything at all: emotional regulation, academics, social skills, or life skills. If you can consider situations through the autism lens, it will often help to inform a more effective and positive response. That said, this list represents some of my best advice. 1. In everything you do, ask yourself: How will this affect my child’s dignity? Here’s why. Autism can mean the autistic child acquires skills and mastery in life skills, communication, social understanding, sensory and motor processing, executive functioning, and emotional regulation along a different timeline than a typically-developing child. As a result, people may get impatient when expectations are not aligned with the autistic child’s ability. The children may then be reprimanded, chastised, or corrected on a regular basis by many different people, and in many different settings, all day long and across years. Even when done with love and kindness, it chips away at the child’s confidence, and many autistic children become risk-averse because they simply do not trust their ability or instinct. If you can identify the gap in their skill or understanding and then teach to that, it is far more positive than catching the child being autistic and making them feel as though they have done something naughty, rude, or inconsiderate… or that they are too slow and are causing everyone an inconvenience. 2. Use positive language. Being corrected or being told “no” are often triggers. Flip your language to tell your child what they can do, not what they can’t. 3. The more rigid and demand-avoidant the child, the more flexible the adults need to be. Often, those children who cannot cooperate with demands are driven by anxiety — they need to be in control of what is being asked of them. If and when this is the case, children do well with a collaborative approach: do you want to tidy your room now, or after lunch? Do you want pizza for lunch or macaroni and cheese? 4. Don’t allow anyone to shame your child for a social misstep. Autism is a social communication diagnosis, and our children often need to be taught, directly, what others may pick up intuitively. It can be so helpful to identify the gap in the child’s understanding, and then, being very mindful of the child’s dignity, find a way to teach what the child has yet to understand. 5. Slow down, because many autistic kids have slower processing speed. Some rules of thumb might be that they can do half the work in twice the time, or that that they are six-second kids in a three-second world. This does not mean autistic learners are cognitively slower — they may just take longer to switch gears or to respond to what is expected. Understanding what slow processing means in your home can mean a sea change. If your child needs five or six seconds to respond when you ask them to do something, try asking, then waiting. Make certain that you have their attention — don’t call them across the room — then give one clear and unambiguous instruction: “Chris, put your shoes on, please.” Here’s the hard part. Now say nothing and wait. Do not interrupt their processing, because if you do, you shoot yourself in the foot. You cause a reboot, and the processing will start all over again. Though there is much to consider even in this little scenario (does the child actually know how to put on the shoes? Are they so anxious that they can’t remember what they have learned, or cannot comply with your command?), learning how to wait to respect the child’s processing can make a world of difference. It can really reduce anxiety in the home and improve the family dynamic. 6. Visuals are a best practice and are essential for many autistic children. Most of our kids benefit from having all verbal commands paired with a visual. In simple terms, this means if you send your 10-year-old upstairs to get your purse and keys, as you are saying it, hand her a note that says: “Keys…Purse.” Have a weekly or monthly calendar and teach your child to use it. Create a to-do list for the morning, for homework, and for the evening routine. Many parents think that if their child is bright and communicates verbally, they don’t require visual support. For the vast majority of autistic learners, the visual reference helps compensate for the impact anxiety has on memory, or for difficulties in executive skills that can mean, among other things, they struggle to remember what comes next. Remember this: humans use visuals, including our phone calendars, to-do lists, step-by-step instructions for cooking. Visuals should not be considered a special education support. They are a human support that helps most people. 7. Live your life out loud! Autistic children may think they are the only ones who mess up — the only ones for whom things don’t go right, or who struggle to understand what to do. The truth is, plans change unexpectedly for everyone at times, but our children are often not aware of this. If you were going to make lasagne, but find you are out of cheese, as the parent, you’d just figure it out and decide on making spaghetti or something else. If you have an autistic child, let your internal dialogue be heard so you can demonstrate problem-solving to your child: “Oh dear. No more cheese left! That’s OK. I will make something else that everyone likes. Let’s see — do I have spaghetti sauce? I do! Perfect. I will make spaghetti instead of lasagne tonight.” By doing this, you demonstrate emotional regulation as you cope with an unexpected change and you solve a problem. 8. Autistic children often have intolerance for uncertainty. Learn about and incorporate the Plan B approach in your home. The more we can help them to understand what to expect, and what is expected of them, the less anxious they may be. Try incorporating the idea of a Plan B into your life. It will help your child to be more flexible when things change unexpectedly. For example, if you have planned to take your child to the park on Saturday morning, teach them to put that plan on their calendar — but not before also including the backup plan! “Chris, I am looking forward to taking you to the park on Saturday after breakfast. I love spending time with you! Now, what is our Plan B in case we can’t go… like if it rains or one of us isn’t feeling well?” The child then chooses Plan B: to watch a Disney video with you and have a bowl of popcorn if the park trip doesn’t work out. You make sure to get the child to put the Plan B on the calendar — and you will review Saturday’s plan several times during the week. 9. Sensory differences are real. Research is showing that up to 90% of autistic learners have sensory differences that may be impacting their behaviors and/or emotional responses. Validating the child’s experience and then letting them know you want to help them to feel comfortable can go a long way to reducing anxiety. Finding a good occupational therapist who can help the child to feel safer and more comfortable in the world is even better. 10. Keep in mind that the majority of autistic people have some sort of sleep issues. Some studies suggest our diurnal rhythms — our body clock — is off by two to three hours. This means your child just may not be ready to sleep when tucked in. 11. Find opportunities for your child to learn from and about autistic role models. For example, the child who loves Pokémon may enjoy knowing that the creator of the popular card game, Satoshi Tajiri, is autistic. Autistic children benefit from knowing their unique way of learning does not have to limit their potential. Read books to them where autism is not pathologized but celebrated. Consider the picture book “Do You Want to Play: Making Friends With an Autistic Kid” by my autistic son, Daniel Share-Strom. 12. Learn about your child’s interests so you can model and practice reciprocal conversation. I know way more than I ever intended about video games, but it allowed me to share a special bond with my autistic son. We’d get into great debates over which was the best gaming system, and he learned to share the conversation, listen to his communication partner, and manage his emotions in the process. I am also autistic, which can make it harder to feign interest. However, I am highly motivated to be a good parent and to have a good relationship with my son. We tend to do well when we find the task motivating and relevant. This approach checked both of those boxes for me. 13. Remember that fairness does not mean equal — it means giving every child what they need. Your autistic children may need more parent involvement and for a longer time than your typically-developing children. Find sibling support groups if your non-autistic children are struggling with feeling unappreciated. 14. Don’t punish the child for being autistic. Too often, people say they understand the child is autistic, but then do little to accommodate the child’s needs. They will yell in a home where the child has auditory sensitivity. They will punish the child for not eating a food when he cannot tolerate the texture or smell. They will flip out when the child’s slower processing speed makes everyone late in getting out of the house. True autism acceptance means raised voices would be avoided, children would not be chastised for a response to an aversive food, and supports would be put in place to allow extra time to get out of the house, or to help the child master skills that are slowing them down.

Maxine Share

14 'Truth Bombs' About Raising Autistic Children

As an autistic writer, workshop developer and autism consultant, I get asked a lot of questions by parents and teachers. The most common request I get always makes me giggle just a little, and it goes something like this: ‘Tell me how to raise an autistic child.” I giggle because autism is simply a way of being human, so there is no prescribed formula for parenting or teaching an autistic learner. Having said that, there is information that is helpful, critical, even essential for parents and teachers to understand if their goal is to help grow healthy, confident, autism-proud children who believe in themselves. After all, autism is a unique way of learning, interacting with others, and experiencing the physical / sensory world. Anyone working with the kid must understand what this means for them. We must try to understand the autism culture through the eyes of the child before considering how to teach anything at all: emotional regulation, academics, social skills, or life skills. If you can consider situations through the autism lens, it will often help to inform a more effective and positive response. That said, this list represents some of my best advice. 1. In everything you do, ask yourself: How will this affect my child’s dignity? Here’s why. Autism can mean the autistic child acquires skills and mastery in life skills, communication, social understanding, sensory and motor processing, executive functioning, and emotional regulation along a different timeline than a typically-developing child. As a result, people may get impatient when expectations are not aligned with the autistic child’s ability. The children may then be reprimanded, chastised, or corrected on a regular basis by many different people, and in many different settings, all day long and across years. Even when done with love and kindness, it chips away at the child’s confidence, and many autistic children become risk-averse because they simply do not trust their ability or instinct. If you can identify the gap in their skill or understanding and then teach to that, it is far more positive than catching the child being autistic and making them feel as though they have done something naughty, rude, or inconsiderate… or that they are too slow and are causing everyone an inconvenience. 2. Use positive language. Being corrected or being told “no” are often triggers. Flip your language to tell your child what they can do, not what they can’t. 3. The more rigid and demand-avoidant the child, the more flexible the adults need to be. Often, those children who cannot cooperate with demands are driven by anxiety — they need to be in control of what is being asked of them. If and when this is the case, children do well with a collaborative approach: do you want to tidy your room now, or after lunch? Do you want pizza for lunch or macaroni and cheese? 4. Don’t allow anyone to shame your child for a social misstep. Autism is a social communication diagnosis, and our children often need to be taught, directly, what others may pick up intuitively. It can be so helpful to identify the gap in the child’s understanding, and then, being very mindful of the child’s dignity, find a way to teach what the child has yet to understand. 5. Slow down, because many autistic kids have slower processing speed. Some rules of thumb might be that they can do half the work in twice the time, or that that they are six-second kids in a three-second world. This does not mean autistic learners are cognitively slower — they may just take longer to switch gears or to respond to what is expected. Understanding what slow processing means in your home can mean a sea change. If your child needs five or six seconds to respond when you ask them to do something, try asking, then waiting. Make certain that you have their attention — don’t call them across the room — then give one clear and unambiguous instruction: “Chris, put your shoes on, please.” Here’s the hard part. Now say nothing and wait. Do not interrupt their processing, because if you do, you shoot yourself in the foot. You cause a reboot, and the processing will start all over again. Though there is much to consider even in this little scenario (does the child actually know how to put on the shoes? Are they so anxious that they can’t remember what they have learned, or cannot comply with your command?), learning how to wait to respect the child’s processing can make a world of difference. It can really reduce anxiety in the home and improve the family dynamic. 6. Visuals are a best practice and are essential for many autistic children. Most of our kids benefit from having all verbal commands paired with a visual. In simple terms, this means if you send your 10-year-old upstairs to get your purse and keys, as you are saying it, hand her a note that says: “Keys…Purse.” Have a weekly or monthly calendar and teach your child to use it. Create a to-do list for the morning, for homework, and for the evening routine. Many parents think that if their child is bright and communicates verbally, they don’t require visual support. For the vast majority of autistic learners, the visual reference helps compensate for the impact anxiety has on memory, or for difficulties in executive skills that can mean, among other things, they struggle to remember what comes next. Remember this: humans use visuals, including our phone calendars, to-do lists, step-by-step instructions for cooking. Visuals should not be considered a special education support. They are a human support that helps most people. 7. Live your life out loud! Autistic children may think they are the only ones who mess up — the only ones for whom things don’t go right, or who struggle to understand what to do. The truth is, plans change unexpectedly for everyone at times, but our children are often not aware of this. If you were going to make lasagne, but find you are out of cheese, as the parent, you’d just figure it out and decide on making spaghetti or something else. If you have an autistic child, let your internal dialogue be heard so you can demonstrate problem-solving to your child: “Oh dear. No more cheese left! That’s OK. I will make something else that everyone likes. Let’s see — do I have spaghetti sauce? I do! Perfect. I will make spaghetti instead of lasagne tonight.” By doing this, you demonstrate emotional regulation as you cope with an unexpected change and you solve a problem. 8. Autistic children often have intolerance for uncertainty. Learn about and incorporate the Plan B approach in your home. The more we can help them to understand what to expect, and what is expected of them, the less anxious they may be. Try incorporating the idea of a Plan B into your life. It will help your child to be more flexible when things change unexpectedly. For example, if you have planned to take your child to the park on Saturday morning, teach them to put that plan on their calendar — but not before also including the backup plan! “Chris, I am looking forward to taking you to the park on Saturday after breakfast. I love spending time with you! Now, what is our Plan B in case we can’t go… like if it rains or one of us isn’t feeling well?” The child then chooses Plan B: to watch a Disney video with you and have a bowl of popcorn if the park trip doesn’t work out. You make sure to get the child to put the Plan B on the calendar — and you will review Saturday’s plan several times during the week. 9. Sensory differences are real. Research is showing that up to 90% of autistic learners have sensory differences that may be impacting their behaviors and/or emotional responses. Validating the child’s experience and then letting them know you want to help them to feel comfortable can go a long way to reducing anxiety. Finding a good occupational therapist who can help the child to feel safer and more comfortable in the world is even better. 10. Keep in mind that the majority of autistic people have some sort of sleep issues. Some studies suggest our diurnal rhythms — our body clock — is off by two to three hours. This means your child just may not be ready to sleep when tucked in. 11. Find opportunities for your child to learn from and about autistic role models. For example, the child who loves Pokémon may enjoy knowing that the creator of the popular card game, Satoshi Tajiri, is autistic. Autistic children benefit from knowing their unique way of learning does not have to limit their potential. Read books to them where autism is not pathologized but celebrated. Consider the picture book “Do You Want to Play: Making Friends With an Autistic Kid” by my autistic son, Daniel Share-Strom. 12. Learn about your child’s interests so you can model and practice reciprocal conversation. I know way more than I ever intended about video games, but it allowed me to share a special bond with my autistic son. We’d get into great debates over which was the best gaming system, and he learned to share the conversation, listen to his communication partner, and manage his emotions in the process. I am also autistic, which can make it harder to feign interest. However, I am highly motivated to be a good parent and to have a good relationship with my son. We tend to do well when we find the task motivating and relevant. This approach checked both of those boxes for me. 13. Remember that fairness does not mean equal — it means giving every child what they need. Your autistic children may need more parent involvement and for a longer time than your typically-developing children. Find sibling support groups if your non-autistic children are struggling with feeling unappreciated. 14. Don’t punish the child for being autistic. Too often, people say they understand the child is autistic, but then do little to accommodate the child’s needs. They will yell in a home where the child has auditory sensitivity. They will punish the child for not eating a food when he cannot tolerate the texture or smell. They will flip out when the child’s slower processing speed makes everyone late in getting out of the house. True autism acceptance means raised voices would be avoided, children would not be chastised for a response to an aversive food, and supports would be put in place to allow extra time to get out of the house, or to help the child master skills that are slowing them down.

Maxine Share

Autistic People Do Not Lack Empathy

One of the most harmful misconceptions about autism is that we lack empathy. In reality, the vast majority of us feel things very deeply. We have emotional empathy by the bucketful. Now, knowing what to do when someone else is overwhelmed with emotion? How to comfort a distressed co-worker or classmate? That would require cognitive empathy, and that can be another story entirely. That’s because the features that landed us on an autism diagnosis in the first place mean we need to be taught what to do in response to the emotions of others. Let’s dig deeper into this. Autism is a social communication condition. This means individuals with this identification will have substantial deficits in nonverbal communication. Translation? They may not understand how to interpret facial expressions, body language and tone of voice in others — and may not be aware of what they are communicating with theirs. A flat tone of voice and flat facial expression — resting b**** face, in other words — can be interpreted as icy cold or uncaring, when in fact, the outward appearance in no way reflects what is felt inside. The autistic person may need to be taught how to respond in each situation. For example, cognitive empathy is called for when your child’s friend has a grandparent pass away. This would be the time to teach him how to respond to and support his friend — and how to act and interact with his friend’s parents. Teach him what to say when he sees his friend, and what to say to the parents. Model for him how to write a sympathy card, and show him what to write inside. Is he old enough to attend the funeral? If so, teach the expectations for behavior in the funeral home, at the gravesite and at the wake. Teach by role modelling, using social scripts, and by viewing video clips. If a classmate’s pet is lost, use it as an opportunity to teach your daughter what to say to the child whose pet is missing, and to practice the tone of voice that should accompany the sentiment. As much as possible, we want to teach our children the Hidden Curriculum of these situations before they embarrass themselves or are labelled heartless, unkind or lacking empathy. We don’t want to shame children for being autistic — for not knowing what others might understand naturally. We do want to teach them what they need to know to stay ahead of social demands such as these. Difficulties with interpreting facial expressions and tone of voice are part of the diagnosis criteria, and everyone who gets an ASD diagnosis these days must display challenges in this area. This means that to enhance someone’s ability to respond appropriately when another person is upset, grieving, angry or frustrated, it is important we teach our children to recognize what these emotions look like. You could ask their school to include a Program Page in the IEP to address nonverbal communication, with a specific goal around teaching facial expressions and body language. There are a number of good books available that could help you help your child, including Making Faces: A First Book of Emotions, or Unmasking the Face: A Guide to Recognizing Emotions. Let’s not forget sensory experiences when we talk about emotions. Many autistic people report feeling distressed at the sound of crying. It can be highly triggering, and if an individual is in fight, flight, or freeze due to a sensory reaction instead of showing sympathy for a crying person, it is considered a highly inappropriate response. In this case it would be essential to understand the depth of the sensory response. This is very difficult for the autistic person, and sensory integration therapy to address the response to the crying adults, children or babies would be the first order of business. At the same time, you could teach the person how to remove themselves from the unpleasant sound, and what words they can use as a cover story. This way, you can teach them self-advocacy and social understanding concurrent to seeking sensory help. If crying is how one measures the emotional impact on a person, autistic people may be negatively judged here as well. Some individuals cannot tolerate feeling overwhelmed with emotion, and will do their best to avoid crying themselves. This stoicism is often interpreted as lacking empathy when it is actually self-preservation. The person cannot stand the sensation of losing emotional control in this way. Deficits in social communication needed for nurturing relationships are also commonly present in autism across the spectrum. This simply means a person may not know what they need to say to you to show empathy when your boyfriend dumps you, when you didn’t get that job you were hoping for, or when you lost your wedding ring. While many typical people may admit they don’t “feel” your distress, they will know the right words to say. An autistic person might need to be taught this — they may not realize how important it is for building and maintaining relationships to show support and empathy in these situations. It has to be taught. Let’s not forget anxiety when we are talking about empathy. In order to show empathy, one needs to notice that something has happened, and that someone is not happy. When an autistic person is consumed by their own anxiety, it is hard to pay attention to anything. Our world becomes very small as we hyper-focus on our perception of imminent danger — even though no danger exists. An autistic person struggling with clinical anxiety may not be aware of what is going on around them, and so they miss the opportunity to provide support to anyone else. These are just a few of the reasons autistic people are accused of lacking empathy. I promise you this: autistic people do not lack empathy. If we do fail to acknowledge your pain, this means there are gaps in our understanding. The challenge is to figure out what we need and then figure out how to provide that lesson or experience. What we don’t want to do is catch a child being autistic — catch him or her not knowing any different — and then shaming and blaming them for it. Instead, let’s identify what they have yet to learn, and find a way to provide it. If that sounds like a tall order, I feel you, but autistic kids can be quick learners if we approach these situations in consideration of their dignity.