That is a question I’ve been pondering over the past couple of weeks. Using the term “Neurodiversity” rather that “Autism” has become the norm over recent years, allowing a wider range of people to be included in our community. In fact, when we started this business 5 years ago, we almost decided on the name “The Neurodiversity Shop” and not Autism Resources SA. We were even criticised initially for identifying with autism so directly.
According to Psychology Today, neurodiversity is the idea that variation in brain function exists across the population. Differences such as autism and ADHD have existed throughout human history and are not due to faulty neural circuitry. Rather than viewing them as such, neurodiversity embraces autism as a different way of thinking and behaving.
Proponents of neurodiversity believe that society should work to eliminate stigma, create accommodations, and fully accept people with autism as capable of contributing to society. The paradigm stands in contrast to the medical model, which conceives of autism as a disease to be treated or cured.
The neurodiversity movement was launched by Judy Singer, an Australian sociologist who is herself on the autism spectrum and coined the phrase “Neurodiversity.” Embrace Autism explains that Singer saw neurodiversity as a social justice movement, to promote equality of what she called “neurological minorities” — people whose brains work in atypical ways. As she defined them, those minorities included people with autism as well as ADHD and learning differences. Singer felt that these differences should not be viewed as deficits, but rather as normal and potentially valuable variations on the way brains work.
A main goal of the neurodiversity movement is to shine a light on the benefits of this diversity. For example, the creativity that so often goes with learning differences like ADHD and dyslexia, or the hyperfocus and novel perspectives associated with autism.
Singer stated that even assumptions about perception which we tend to take for granted—that we all more or less see, feel, touch, hear, smell, interpret, process, and broadly speaking experience in more or less the same way unless visibly or otherwise obviously disabled—are dissolving. For this reason, she said that the neurodiversity movement must keep gaining traction, so that differences in the human condition can be more readily acknowledged, explored, and even utilized.
Neurodiversity has also evolved from a focus on individuals with a formal diagnosis of autism, ADHD or a learning disorder to include a broader group of people, many of whom self-identify as neurodiverse.
Cynthia Martin, PsyD, the Clinical Director of the Autism Center at the Child Mind Institute, describes this shift:
“The term used to be used to describe people who either had a clinical diagnosis or were borderline, with symptoms that are near the clinical threshold for a diagnosis,” she explains. “More recently, what I’ve seen is broadening to include anybody who identifies with it. People who feel that they think or process outside of the box.”
Neurodiversity, she says, has become something many people, especially adolescents, are increasingly comfortable identifying with. For kids who are struggling socially, identifying as neurodiverse can be a way to make sense of what they’re going through. The concept gives them a brain-based explanation for their difficulties — “Oh, I’m like this because my brain works differently.” It can also help create a sense of community with others who identify as neurodiverse.
Some children are now diagnosing themselves with conditions that fall under the umbrella of neurodiversity, seeing a potential diagnosis as a way to validate their experiences. “The result is that we’ve been seeing parents come in with their self-referred 11-to-13-year-old who wants to be evaluated for autism,” says Dr. Martin. These children may or may not end up with autism diagnoses, but an evaluation is often an important step toward helping them feel better and cope with challenges.
According to Reframing Autism, the liberation of not being labelled neurologically impaired or deficient has proved an enticing prospect for autistic individuals. Because we – and many others with different neurological variances – want the opportunity to exist without judgement. The neurodiversity paradigm also doesn’t presume to categorise neurodivergences into “healthy” or “deviant” differences.
So, within the neurodiversity paradigm, autistic and neurodivergent are not equivalent, but autistic brains are neurodivergent, since they do not develop along the expected trajectory. But there are many other expressions of neurodivergence and all are invited to just “be” in the world without judgement. At the moment included in the definition of neurodivergent are:
I like the Euler diagram that Adaptive Edge Coaching uses to illustrate the difference:
As argued by Amy Lutz in her Psychology Today article "Please Stop Whitewashing Autism," it is not that simple. Adopting the Neurodiversity paradigm may have noble intentions, but it whitewashes the "other side of autism."
According to Moheb Costandi in the Aeon essay "Against Neurodiversity," the neurodiversity movement has indeed empowered many with autism, for example Greta Thunberg who described it as her 'superpower'. But the movement is proving to be harmful in a number of ways.
He argues that neurodiversity advocates can romanticise autism. While many with mild forms of autism might lead relatively normal daily lives with little or no assistance, many who are more severely affected cannot function properly without round-the-clock care.
In their zealous pursuit of autistic rights, some advocates have become authoritarian and militant, harassing and bullying anyone who dares to portray autism negatively, or expresses a desire for treatment. This extends to autism researchers in academia and the pharmaceutical industry, and also to the parents of severely autistic children.
For example, John Marble, founder of Pivot Diversity, an autism advocacy organisation in San Francisco posted this on Twitter in 2017:
According to Jill Escher, president of the National Council on Severe Autism and mother of two non-verbal autistic children, neurodiversity advocates cherrypick naive, feel-good stories that portray autism falsely instead of grappling with the reality. She says "If my child is having a meltdown at the supermarket, or taking his clothes off, or screaming, I want people to appreciate that his behaviour comes out of a difference in his brain wiring. But do I think his behaviour and wiring is natural? Absolutely not."
"If you're happy being autistic and think of it as part of your identify, that's great, and I don't want to upset you or hurt you, but don't tell me I can't try to help ease my sons' suffering,' says Bruce Hall, author of Immersed: Our Experience with Autism (2016), about his two autistic sons. "For them, autism is a life-altering, cruel disability, and I'd do anything to help them feel good and give them a better quality of life."
"Neurodiversity advocates ignore the harsh realities of severe autism, and want to forget about my sons and others like them," he added. "They've done a good job of hijacking the message and monopolising the discourse on autism, and are controlling the narrative so tightly that people like my sons will have no choice in the world."
My mother-in-law had a saying "alles wat te is, is sleg vir jou behalwe te voet en te perd." It doesn't really translate well to English, but it implies that maybe the neurodiversity movement is taking it too far. But many advocates of ABA and "autism cures" have gone way too far as well, therefore we should balance the need for acceptance and the need for treatment.
Yes, I am neurodivergent, but first and foremost I am autistic. I love the fact that I can solve complex problems and process huge amounts of data, but hate that my anxiety sometimes prevent me from doing the simplest tasks. I cannot stand watching my children's daily anguish and frustration and will try any treatment or medication that may decrease their suffering.
But I will research those treatment or medications objectively before exposing them to it. And test it on myself first to understand the impact and side effects.
Balance.
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According to Therapy Associates, the diagnosis of autism for a child affects and impacts the whole life of their family; Parenting an autistic child can have negative impacts on the psychological state of their family. Caregivers of children with autism face stress that can affect their mental, physical, social, and financial wellbeing. Specifically affecting the mothers’ working and social relationships.
Mothers are often the primary caregiver to their children. The concern and stress of constantly worrying if their autistic child will ever live independently, i.e., go to college, have a career, etc., causes them to bear a heavy burden. Feeling all these negative emotions and the expectations of a woman’s role in society are piled on top of a mother’s many worries. These women are not just mothers of autistic children but people with hopes, dreams, and problems outside the role of a mother.
Mothers who feel they are inadequate or failing their autistic child are likely to suffer from depression. Constantly worrying over the “unknowns” and the “what if’s,” mothers of autistic children can also develop anxiety. Symptoms of anxiety include excessive worrying, insomnia, lack of concentration, and irritability. It makes the parenting experience much more difficult and challenging because they are often drained and do not have enough energy to give their child what they feel they need.
In fact, Autism Parenting Magazine reports that about 50% of mothers of children with autism spectrum disorder (ASD) had higher levels of depressive symptoms, compared to 6% - 13% for mothers with neurotypical children. this is based on a 2022 study from The University of California, San Francisco (UCSF).
“Being the parent of a child with special needs is inherently challenging every day,” said Dr. Elissa Epel, PhD, UCSF one of the authors of the study. “It is a prototypical example of chronic stress, which is why we have been focusing on caregiving moms in our studies that examine effects of stress on health.
In the article In Defense of Autism Moms, Stephannie Bethal says that mothers of autistic children have a very different experience than typical mothers due to their child’s specialized needs. Based on data from a survey she conducted of over one hundred mothers of autistic children, on average, an autistic child participates in at least two therapies, such as occupational, speech, or physical therapy. Mothers are constantly being told by professionals about the issues their child has, and progress is measured by charts, numbers, and assessments.
One mother explained her different parenting experience by saying, “things aren’t always the same as they are with neuro typical children,” and she expressed her hope that others would “understand why we celebrate every little achievement." Another mom voiced her irritation with people comparing “normal” parenting to parenting autistic children, saying, “people are like, oh, well, it’s not that different. I’m like, yeah, because you’re changing diapers on your twelve-year-old. Yeah, I’m gonna go with it’s different." While other mothers may be displaying their child’s soccer trophy, many mothers of autistic children are celebrating their child mastering a skill like hair-brushing or successfully using coping skills to avoid a meltdown.
Initially, autism moms tend to go through a rollercoaster of emotions regarding their child’s diagnosis depending on their understanding of autism. This usually begins with overwhelming negative feelings. For instance, an article published in the Journal of Autism & Developmental Disorders states that “parents who receive a diagnosis of a significant developmental disability for their child often experience strong emotional reactions that reflect their grief for losing the hoped-for typically developing child”. Hearing that their child has autism can send parents into despair, especially those who are not well-acquainted with autism and have only heard about the negative aspects.
In fact, some mothers directly blame their minimal knowledge about autism for their initial feelings of sadness and grief, including one survey participant who said, “I was sad for [my child] because I did not understand autism, but now that we are [five] years in, I no longer feel sorry for him. I just encourage him to be himself because he is an amazing child”.
Here are three amazing pieces of advice from other Autism moms, sharing their journeys:
Hi there, fellow mom,
I, too, have an autistic child, except he’s not a child anymore. His name’s Diego and he’s 26.
You’ll go through various stages when it comes to how you view your child and his/her autism. I’ve been through every stage in the book, so I thought I’d share how it’s gone for me (at least up to now) so you know what to expect and to save you some of the anguish.
You’ll obsess about scores and tests, praying the gaps between below average and average will narrow. One day, you’ll realize testing serves this one purpose: advocating for your child. You’ll understand scores are what matters to society, not what matters to your child.
You’ll feel sick before, during, or after important school meetings. I, for one, had to excuse myself and head to the ladies’ room right before any IEP meeting!
You will not resist the power of denial.
I was convinced I’d “fix” Diego and he’d exit from special education, go to college, and just be quirky. I held on to this idea for so long you could say I was delusional. Anyway, Diego wasn’t “fixed”. He’s still autistic and intellectually disabled.
And so, when Diego aged out of public education, instead of going to college, he accessed new agencies and systems.
I’m here to tell you this: There’s no need to panic. It will be OK.
Here’s something else: You’ll argue a lot with your child’s other parent. My husband and I even disagreed on whether there was anything “wrong” with Diego up until he was nearly three.
You’ll think you have it worse than everyone else.
In case you’re not aware, relationship problems are no less frequent for partners with perfectly “normal” kids.
At times, you’ll think you’re crazy. For a good while, only I had concerns about Diego. Everyone else said he was just a late bloomer.
When Diego lined up his little toys, he was obviously engaged in some interesting geometric feat, my sister said. He went berserk when we took a different route to get to my mom’s house because he was so smart he had learned the way already, my husband insisted; "C’mon, Daniella, he’s just a toddler!"
Anyhow, if Diego’s at all like your child or you’re at all like me, perhaps you’ve moved beyond this God-awful, I-must-be-crazy stage already. As it is, this stage passes relatively early because other, less emotionally attached adults will enter your child’s life.
You’ll feel guilty for not doing enough for your autistic child and for neglecting your other kids. You’ll feel guilty when you lose it. I actually pushed Diego into a pool once because he was driving me nuts. And I bit (yes, bit!) his forearm when he threw a wild tantrum at a store.
Guilt was the one emotion that pulverized my heart.
Fellow mom, if there’s anything I wish for you it is that you learn to forgive yourself quickly. Your child will.
Plus, somehow, something extraordinary will happen. Your parenting experience will evolve so it isn’t frightening anymore. It will still be hard, exhausting, exasperating, and frustrating, but not a constant source of fear and anxiety.
You might accept, embrace, celebrate, or even love aspects of your child you thought you had to battle and extinguish.
He’ll teach you about different kinds of minds.
You’ll learn that financial and physical independence are not the purpose of any life.
Your autistic child might even help you glimpse this truth: that LOVE is the ultimate goal. Love and compassion toward all beings, including yourself.
That’s been the case for me.
Trust me on this: Wherever you are in your journey as a mother, how you feel about it will change. Heck, mine will, too. I might write you a letter about it when Diego’s 50.
Until then, take good care,
Daniella
My son is autistic. He received an autism spectrum disorder (ASD) diagnosis when he was three years old, which opened the door for a plethora of covered therapies, a rigorous therapy schedule and—on my part—excessive anxiety.
The early years were incredibly difficult, and I do not look back on them fondly. There was too much unknown, too much stress and way too much silence. My son met many milestones shakily, and I tortured myself with whether or not they counted.
When many toddlers were asserting their independence, he was quite passive. Speech and fine motor delays made independence more challenging. He seemed content to have things done for him. During that time, aside from “I love you,” the words I wanted to hear the most were, “I can do it.” It isn’t easy being the mom of a child with autism, and surely not everyone will understand my experience. But here are a few things I’d like for people to understand.
1. My kid’s milestones probably look a lot different than other kids’
For my son, it often takes longer to acquire a new skill. Every parent wants their child to be independent, but the reality is that in the business of everyday life, parents often don’t have the time to nurture a particular skill if it takes some time to acquire. It’s a slippery slope of dependency—but the consequences of not nurturing and supporting independence are serious.
Nurturing independence is even more crucial for kids on the autism spectrum. The statistics are sobering, with 2% attending college, 15% being employed and 1 in 5 living independently since leaving high school.
With my son turning double digits, it was a wakeup call for both of us to start stepping outside our comfort zones. Suddenly, every small step toward independence mattered. As a younger child, he never wanted to be left alone—I needed to be within eyesight, or he would come looking for me. Today, he still prefers that I’m somewhat nearby, but he has progressed to within an earshot.
After some discussion and experimentation, I was able to do short bouts of yard work (with his face sporadically pressed against the window), leave him in the car as I sprinted into Starbucks to pick up my coffee and then he even rode his bike solo around the neighborhood, which gave me a high that lasted close to a week. That bike ride was a milestone on his journey to increased independence for a variety of reasons: following the rules of the road, navigating any chance encounters with strangers and neighbors and returning home within a certain period of time.
After these successes, he was ready for his “first errand”: walking to a mailbox about eight minutes away to drop off (ironically) my life insurance payment. Another reminder of one’s mortality, that I won’t be around for him in perpetuity. I timed this errand so my partner could surreptitiously be in the parking lot nearby to ensure he got there safely. My partner hit some unexpected traffic so never made it in time, but the errand was successful.
When I saw him appear from down the street (this time with my face pressed against the window), I got a feeling I wish I could bottle: that feeling that everything is as it should be, and it will be OK.
The next day, we were at one of our favorite restaurants and he announced he needed to go to the bathroom. As I got up from my chair to escort him, he said, “I can go by myself.” I was shocked and tried to play it cool as he had never done that before. Was it a coincidence that he decided to go on his own after running his first errand? I’ll never know for sure, but I think not.
I share this because achieving independence is something much of the general population takes for granted. I’ve learned that fostering independence takes planning, effort, patience and additional time. My family has made conscious adjustments in our daily lives to build confidence and decrease dependence.
With every success and step forward, it’s easier to imagine what he’ll be doing in the next couple of years. He adores trains, so we have spoken about him taking the train when he gets older. Today, neither of us are ready for that. I’ve realized it’s OK if he takes a bit more time to establish independence as long as he’s making strides to get there—and I’m encouraging it.
2. My experience as a mom is vastly different than yours
When my son was a toddler and I was still reeling from his ASD diagnosis, I tentatively asked one of his therapists that I had grown close with if it was obvious he was autistic. She looked me in the eyes and said without hesitation, “Jane, we all know when a child is different.”
Looking back, I cringe thinking about that moment in time because I desperately wanted him to fit in and be a part of the neurotypical majority. In my mind, life would be easier and more predictable. Today, as a mom squarely in midlife, I know how naïve that mindset was: nothing is guaranteed for any of us—with or without a diagnosis.
Sometimes, in an effort to avoid being uncomfortable, people resort to platitudes about raising kids and make empty predictions about my son’s future. A few that I’ve received over the years: “He’s got good language. My so-and-so’s son was autistic and never spoke. I’m sure he’ll be fine.” Or “Have you tried Therapist X? She did wonders for my neighbor’s child and now you can’t even tell he’s different.”
Some moms have even tried to one-up me and share their experience of when their kid broke a bone and then summed it up with something like “All kids are hard to raise. It takes a village.” Although these comments may be well-intended, they don’t have that effect. I’ve most appreciated when other moms have asked questions rather than make assumptions about my son and his future. I value humor, support and an effort to understand—similar to most moms.
When you’re uncertain of what to do or say, err on the side of being inclusive. Ask for a playdate. Encourage your child to get to know the kid that’s different. Take an extra minute to introduce yourself to the mom sitting alone at a school concert because the other moms already know each other from past playdates. This stuff matters, and I speak from experience.
My son’s early years were some of the loneliest: dealing with all the uncertainty that comes with autism, balancing a full-time career and my son’s therapy schedule, and figuring out my new identity as a mom was overwhelming. On difficult days, I would have welcomed these because one simple gesture can change the trajectory of the day. Trust me.
3. It should be easier to provide meaningful experiences for a child with autism to engage with neurotypical children—outside the school setting
Like most mothers, I will fight to create opportunities for my son to thrive. This can be challenging when it comes to group activities if one’s social skills are not at the same level as peers or if there’s some behavioral unpredictability. As a result, group activities or team sports have not been an active part of my son’s life until late last year (ironically) during the pandemic. Neurotypical humans are a majority in this world—and I’ve always felt it important for my son to understand and get along with them, too.
But how can one develop this important skill if opportunities are limited and kids remain siloed? In my search for meaningful experiences for my son outside the school setting, I’ve primarily come across group activities specifically for kids with disabilities and ones that will consider a child with a disability if an aide or therapist is present. Neither are a good fit for him, as they do not provide the organic real-life experience.
We need more organizations that specialize in kid activities that embrace inclusivity. We need those leading kid activities to be creative and flexible in accommodating a range of different needs alongside neurotypical kids. Whenever this happens, it creates a pathway for understanding and acceptance. That is real life. Without all types of kids contributing to a shared experience, silos will remain.
As a parent of a child with a disability, you simply want to hear, “OK, let’s try it and we’ll go from there.” In the disability community, it doesn’t happen enough. When I told a colleague that my son enrolled in choir, she called him a “trailblazer.” She was referring to the fact that he was the only obviously autistic kid in the group, and his participation would (hopefully) pave the way for others to join.
We’ve been on this journey for five years, and while every day provides its challenges, reminding myself of these things helps us get through the hard times. My son, Channing, is almost six and nonspeaking. We have difficulty doing things that aren’t a part of our normal routine, but we always want to give him the same experiences and opportunities as his peers and his sister. Being the mom of an autistic child isn’t easy, but here’s 10 things I’ve learned that have helped us navigate this journey a little easier.
1. It’s OK to say no.
You know your child better than anyone. If a situation is going to be hard on them and you aren’t prepared to go down that road, don’t. Yes, we should always push outside our comfort zones and try things with our kids to see if it’s something they enjoy. However, you should never do it when you haven’t fully prepared. It’s OK to say no. Say no to the birthday party everyone is going to and you hate to miss, say no to a play date you aren’t up for. It’s OK. I know it’s hard and you want to say yes, and the day will come when you can. But remember it’s OK to say no and sometimes it really is best if you do.
2. Enjoy each stage.
This is a hard one for me as we recently went through a stage of sleepless nights and a need for me to lay in bed with Channing until he fell asleep. It was a quick stage, but while it was going on, it was exhausting. However, I did not for one second take advantage of those snuggles. I never get those snuggles and they were so needed and loved. Now, that stage is over. I miss the snuggles but I am so glad I chose to relish in them. Some stages will not pass so quickly, and you will pray they would… but remember, they will pass. And what could come next may be even harder than the stage you are currently in, so do your best to enjoy what you can out of each stage.
3. Ask for help.
I straight up moved next door to my mama within months of Channing’s diagnosis. I needed help. I still need help. Every.Single.Day. I am not one of those moms who can take multiple kids on outings by herself (see #1… I normally have to say no). I have to ask for help, and I have to be okay with receiving help.
4. Take time for yourself.
This is 100% easier said than done and I know some of you don’t even have the option of time for yourself. However, it is so important. I never ever imagined I would be a stay-at-home mom. I never wanted to be a stay-at-home mom. But here I am… and I know that to keep from going bonkers, I have to take time for myself. Even if it’s a 50-minute Barre class, a 10-minute drive around the block, or an entire weekend away. I need it, and I need it as often as I can get it. And I can bet you do too.
5. Never give up.
Never throw in the towel. There are times when I think I cannot do it any more. I can’t keep talking to him in the backseat when he doesn’t respond. Will he ever respond? Why am I even talking and asking him questions I know he won’t answer? But in times like these, I remember… he is counting on me. He needs me. I can’t give up on him and I can never let him think for a second I would. So I’ll keep talking to him, I’ll keep asking him those questions and I will never give up hope that one day he will say, “Thank you for always talking to me, Mommy, even when I didn’t respond.”
6. There are understanding people, and there are uninformed people.
You will come across some seriously understanding people who will let you jump in front of them in line when your child is upset just so you can leave the store faster. You will also come across seriously uninformed people who will say, “Awww, someone isn’t going to get a turn on the train if they don’t wait patiently and be still.” Yes, someone said that to us. Someone very uniformed. You have to remember that people don’t always understand your situation and may say things that are incredibly hurtful and flat-out wrong. Thank the kind ones and ignore the others. They don’t deserve an explanation and they probably wouldn’t understand it if you gave them one.
7. Don’t compare your child’s autism journey with those of other children with autism.
I have struggled with this. Every child with autism is different. Every child’s journey with autism is different. I was constantly comparing Channing to those other children with autism and trying to figure out how they are able to talk and he isn’t. Then I realized some of them had certain behavioral problems that were extremely difficult to overcome that we did not have with Channing. So while I was just wishing my son would talk like their child, they were probably wishing their child would behave like mine. All of that to say, everyone is on their own path when it comes to ASD. No two are alike, and you can’t compare them.
8. Try new things, but have a back-up plan.
As I said in #1, it’s OK to say no. But it is also OK to say yes… when you are ready. However, always have a back-up plan. It will reduce your anxiety when trying new things and hopefully set you up to succeed instead of fail. For example, we recently went to Carowinds,) an amusement park here in Charlotte, North Carolina. We drove two separate cars to the park, packed two bags of Skittles, a change of clothes, and pull-ups. We ended up not needing the two separate cars, the change of clothes, or the pull-ups… but we did tap into both bags of Skittles! I always knew in the back of my mind that if one child was having fun and the other wasn’t, we had the option to send one home. It kept my anxiety down and we had a great visit. A back-up plan is a must, in my opinion. I also always prepare myself for the worst and am normally pleasantly surprised (normally).
9. Advocate, advocate, advocate.
No one is going to fight for your child like you are. If you want something to happen, you’re going to have to fight. Whether it’s at the doctor’s office and you feel like you aren’t being heard, or at therapy and you feel like the therapist isn’t a good match. No matter what it is, you will have to do the advocating if you want to see the change. You can. And they are worth it.
10. Don’t dwell on the future.
I really need a tattoo of this one. I am the world’s worst at dwelling on the future. One look at my google search history would prove as much. However, I really feel like I am the happiest and most appreciative when I do not focus on the “what ifs”. When I think about the positives going on here and now, I find the strength to keep going. When I think about the future and the “unknown”, I want to give up. So, I say focus on the positives and remember the future is completely out of our control anyway. (Unless you find a way to see into the future, then let me know.)
Lastly, something to remember:
“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need, they’ll make their own boxes.”
Dr. Temple Grandin
“Autism parents are strong, determined, and fiercely protective. They face challenges others can’t imagine, and they never give up.”
Unknown
“When you change the way you look at things, the things you look at change.”
Wayne Dyer
“Every child is a different kind of flower, and all together, they make this world a beautiful garden.”
Unknown
“Autism is not a choice. However, acceptance is. Imagine if the one thing people judged you on was the one thing you couldn’t change.”
Stuart Duncan
]]>Our bodies naturally sense and position themselves in space through a system called proprioception, which involves sensory receptors in our joints and muscles. Unfortunately, around 95% of children with autism process sensory information differently, affecting at least one of their eight senses.
What is Proprioceptive Input?
Proprioceptive input plays a significant role as a regulator in the body, acting like a natural calming mechanism for an active nervous system. When a child might feel overwhelmed or overstimulated by their environment, engaging in activities that provide proprioceptive input can help bring a sense of order and calm.
This sensory input can improve a child’s attention and focus, making it an effective strategy to prepare them for various activities throughout the day.
Parents and caregivers can create a supportive environment by incorporating proprioceptive activities into a child’s routine, such as activities involving:
Proprioceptive input activities aid relaxation, organization, and readiness for daily tasks and challenges.
How Does the Proprioceptive System Work?
Our joints and muscles come equipped with receptors that connect with the brain through the nervous system – which is why we know precisely what tasks our bodies are doing, even without paying attention to it.
There are three different sensory receptors called proprioceptors:
We are all too familiar with the five better-known senses – sight, sound, touch, smell, and taste. Proprioception is one of the three lesser-known ones.
The other two are:
Signs Your Child May Have Sensory Issues
More often than not, sensory input challenges are mistaken for behavioral issues. Children with autism perceive the world quite differently from many neurotypical people.
According to The American Journal of Occupational Therapy, they often struggle with proprioceptive difficulties, making them act challenging or hyperactive.
However, the opposite also applies. Lethargy and social difficulties are also signs to watch out for, possibly due to proprioception processing issues. Understanding these signs will help you support your child throughout this sensory improvement journey.
The most vital step is to be willing to remain open-minded and not mistake their struggles for tantrums. For practical purposes, we are going to divide all these signs into two different categories: perception and praxis issues.
Perception Issues
Also known as sensory discrimination issues, they happen when the brain cannot interpret or give meaning to sensory input. Some examples include:
All these struggles have one thing in common: an inability to associate a sensory input with its meaning or interpretation – it’s like doing the same thing repeatedly as if it were the first time.
Praxis Issues
Praxis issues deal with unknown motor movements, something their bodies have never done before.
All of these behaviors tend to compensate for the sensory-seeking struggles these children are experiencing. Some adults with ASD even describe these feelings as if their bodies are numb and floating, with no awareness of where their bodies are at whatsoever.
Engaging and promoting proprioceptive activities with your kids should help with the following:
Proprioceptive Input Activities for Autism
While it’s true that most kids enjoy proprioceptive activities or at least participate willingly in them, there will be some in particular that children do not like. It is not advisable to force any form of sensory-seeking activity on children with ASD.
That said, here’s a complete list of wide-range proprioceptive activities for all sensory input stimuli in children with ASD.
Before becoming disengaged or lethargic, participate in a five-minute break of full-body movement with one of these ideas:
Trying a 7-minute HIIT emotional workout may be a good idea, too. For this workout, you will need:
All you need to do is a little room inside your house, shoving furniture to the sides. Results are best if done first thing in the morning because it sets the brain in a learning mood, ready to engage.
If you’re familiar with the Tabata method, you’ll understand why this works so perfectly. Set the timer for seven rounds of 45 seconds of work, with an interval of 15 seconds of rest.
Ideally, do these exercises with your kid; be the model you want them to see. For 45 seconds, do as many reps as possible of the following drills. The goal here is to become truly tired, sweaty, and a racing heartbeat.
Remember to play an upbeat song on repeat, one your kid loves! Here are some exercise ideas that you can try:
Once you finish with the drills, cool down slowly and dynamically. Don’t just lay on the ground, but pace around the room. As your heartbeat returns to normal, do some stretches and yoga poses with your child.
Most importantly, have fun and be creative! The animal theme creates an excellent creative outlet, so make sure to make animal sounds and gestures and possibly even decorate your living room like a jungle to give meaning to the activity.
Although they’re not as efficient as full-body movements, oral-motor activities are still pretty helpful in situations where you need to sit still with your kid, like a school meeting, doctor’s office, waiting rooms, etc.
Our jaws come equipped with proprioceptors, and we can stimulate them by:
Unlike the first set of movements, which required only using the body, these activities will need props and objects to play:
Children with ASD are not usually drawn toward the collective aspect of sports since many aren’t comfortable socializing with other kids or with other groups.
However, it doesn’t mean you can’t engage in sporting activities with your child. You can try:
These activities involve pulling, pushing, and lifting weights to stimulate the proprioceptors in the muscles and joints. Here are some ideas:
Things to Consider Before Choosing Proprioceptive Activities
Before choosing which activities you will implement with your kids, there are some questions to ask and factors to consider. We are going to detail these below:
Will the activity serve the purpose of calming an over-responsive child? Or will it stimulate an under-responsive, sensory-seeking kid?
When dealing with anxious children, first identify the trigger points for anxiety. These could vary from a playground, a school assembly, lunchtime, etc.
Once you’ve identified these triggers, introduce the activity before they can become anxious, helping them remain calm during such events. If successful, incorporate them into their timetables or visual schedule.
Likewise, with under-responsive and sensory-seeking children, you need to identify the lethargy trigger points when they become disengaged and distracted. Usually, these triggers happen either before or after sitting independently to work on a personal task.
Identifying trigger points will help you determine how often you should implement an activity. Every child is unique, as are their sensory needs. Focus on short activities rather than long ones.
Monitor how long it takes for your child to sway from lethargy to re-engagement or stress to calmness. This time interval will determine the duration of the activities.
It’s essential to know your surroundings and understand the correct place where the activity needs to happen.
Some tasks are available without leaving their seats, such as:
Others are still doable within a room, for example:
There are also outdoor activities, such as:
Fostering Confidence Through Proprioceptive Input
There are numerous benefits to promoting proprioceptive input in children with ASD. From everything we already discussed, arguably the most important one is confidence-building and awareness of their bodies and their surroundings.
Children with autism perceive the world differently than some of us. But they sense it, nonetheless. Helping them understand how the world around them works and how they also belong here is a critical step in their development. Ultimately, promoting these sensory input activities should help a child with special needs reach their full potential and get ready to tackle the world.
References:
The proprioceptive senses: their roles in signaling body shape, body position and movement, and muscle force. Physiol Rev.
https://pubmed.ncbi.nlm.nih.gov/23073629/
A set of Full-Body Movement Features for Emotion Recognition to Help Children affected by Autism Spectrum Condition, University of Genova
http://fdg2013.org/program/workshops/papers/IDGEI2013/idgei2013_4.pdf
Supporting Children with Sensory Processing Needs in the Early Years, Cumbria County Council
https://www.cumbria.gov.uk/elibrary/Content/Internet/537/1459/7037/18016/4450511357.pdf
Sensation-Seeking. In: Volkmar, F.R. (eds) Encyclopedia of Autism Spectrum Disorders. Springer
https://link.springer.com/referenceworkentry/10.1007/978-1-4419-1698-3_191
Sensory Integration and Praxis Patterns in Children With Autism, The American Journal of Occupational Therapy
https://research.aota.org/ajot/article-abstract/69/1/6901220010p1/5958/Sensory-Integration-and-Praxis-Patterns-in
Neurophysiological hyperresponsivity to sensory input in autism spectrum disorders. J Neurodevelop Disord
https://jneurodevdisorders.biomedcentral.com/articles/10.1186/s11689-016-9162-9
Kinesthetic Inputs. In: Pfaff, D.W. (eds) Neuroscience in the 21st Century. Springer
https://link.springer.com/referenceworkentry/10.1007/978-1-4614-1997-6_31
Approaches to the Teaching Exercise and Sports for the Children with Autism. International Journal of Early Childhood Special Education
https://dergipark.org.tr/en/pub/intjecse/issue/8653/107971
Effect of yoga on children with autism spectrum disorder in special schools. Ind Psychiatry J. 2022
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9678151/
Addressing Sensory Needs for Children With Autism Spectrum Disorder in the Classroom. Intervention in School and Clinic, 2022
https://journals.sagepub.com/doi/abs/10.1177/10534512221093786
October 18, 2022
What’s it like to have autism? I have often found myself wondering this when out and about with my children, watching them interact with the world.
I am a parent of someone diagnosed with autism spectrum disorder and have found myself watching videos by autistic people, and reading some books written by autistic people to try and understand what it’s like to have autism. The overwhelming response seems to be that autistic people feel that the world isn’t made for them and only neurotypical people can really understand how it works.
There are specifics that are different for each individual, as no two people with autism are going to experience the world the same way. This article is going to spotlight a few autistic people and how autism feels to them and what we, as parents, can do to help the world feel like a more accepting place.
That was hard to hear as I watched each of the individuals explain their experiences as they went through life before they were diagnosed, being diagnosed, and after diagnosis. It would seem that most people don’t really understand how to interact with individuals that are neurodivergent and that the stigma that surrounds autism spectrum disorder doesn’t help with those interactions.
I have taken quotes from individuals on YouTube and a book that I have read that I felt did a good job giving a well rounded explanation of their experiences living with autism and how they feel. The following article will be predominantly based around those individual experiences and a tool to try and understand how autistic people may feel and their life experiences.
This isn’t a complete analysis on how every person diagnosed with autism spectrum disorder feels and their experiences. Every individual is different, this article is just a tipping point and conversation starter to help open the door to how someone else’s life experiences differ and what could possibly be started to help those in the future.
So, what is it like to be autistic?
This is the million dollar question and one that parents, teachers, and those that interact and have an autistic person in their life wonders. I have summarized what a couple of people have stated being autistic is like for them.
When asked what’s it like to be autistic? Dan from The Aspie World answered:
“It’s like being all by yourself, in a crowded room constantly. When you could be in bed relaxing. And then, all of a sudden at no fault of your own, at the drop of a hat, you’d be flipped upside down into a bath of cold water.”
He added, “Then thrown into the middle of the street with people looking at you while reciting the national anthem backwards. That’s how confusing life is for people on the autism spectrum.”
No two stories are the same
Ethan Lisi discussed what it’s like to have autism spectrum disorder on the Ted channel. He had so many important points and they were all very eye opening.
In one of his examples, he compares two game consoles, a Playstation and Xbox. He states:
“They are both highly capable consoles with different programming. But if you put your XBOX game in your Playstation, it won’t work because the Playstation communicates differently.”
This is how he felt that the neurotypical brain versus the autistic brain compare. He continues by stating:
“The main problem with living autistic in today’s society is that the world just isn’t built for us.”
As a mother to a child with autism, that brought tears to my eyes and a tug at my heart. I wondered if this was how my child felt, because I know there are challenges. They can either be made easier or more difficult depending on whether people are unwilling to forget about in-box thinking and realize that there really is no box necessary to make a world that is accepting and comfortable for people with autism.
What does stimming and empathy have to do with it?
Ethan Lisi continues his talk and includes stimming and explains that it is the autistic person’s way of zoning out:
“It can often feel necessary for us to stim. However, it’s often frowned upon, and we’re forced to hide it. When we’re forced to hide our autistic traits like this, it’s called masking. And some people mask better than others.”
He talks about masking and adds, “Some people think that because of our ability to mask, that this is the cure to autism. However, all it really does is make us ashamed of showing our true selves.”
When discussing empathy and the stereotype that autistic people don’t have empathy he explains that he has a lot of empathy, he just doesn’t know how to react. He says:
“Emotional expression, however much or however little, is difficult for me. And that is because I am bursting inside with every single emotion one feels at all times. Though, of course, I cannot express it that way.” He continues, ” My inner feelings are unlimited, but my mind only lets me express extremes or nothing.”
What it’s like living with autism
In the video, 5 Things about Living with Autism, a young man named Andrew discusses his diagnosis and talks about how his brain is wired differently. The five examples include:
Different ways parents react
Tyler McNamer wrote a book called Population One. It talks about daily life as a person on the autism spectrum disorder. Some of the subjects he talks about is bullying, things that make a person with autism feel unaccepted, and how his parents make him feel.
In his chapter labeled My Mom, he talks about how his mom makes him feel accepted. He says:
“When I’m at Mom’s house, I get to be myself when I’m indoors. It’s like no one is there, and no one minds when I’m a little odd. But that’s what’s cool about being at Mom’s house – I get to release the oddness and get it over with. I don’t do it anywhere else because then people would think I’m weird.” He finishes the chapter saying, ” With Mom, everything is calm and not complicated. With Dad, it’s a different story.”
He talks about how his dad views Tyler’s life differently because of the way he views his world. There are more comments about his parents like:
“Both my parents are sometimes the same, sometimes different. They are like the Yin and Yang of my life.”
What parents can do
Parents can make all the difference. A lot of times parents are the cushion that autistic children have, their safe place.
Although there can be aspects that can seem a little overwhelming and difficult to understand. Certain things like sensory sensitivity, social anxiety, a fascination with special interests are very important, but making your child feel accepted for who they are seems to be the overall response people with autism want from parents, caregivers, and others they love.
Non autistic people have a hard time understanding a world where they don’t fit, that makes you feel that you don’t belong. Those individuals that aren’t neurotypical, like those with Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), and other learning or social skills disorders that have been bullied and felt different will have an easier time understanding autistic people.
Although I am a non autistic person, my child has told me they feel that I am one of the people who understands them the best because I don’t see things the way everyone else does. When they said that I cannot explain how great that felt because I knew they felt accepted somewhere, but I wanted them to feel that in more places and from other people as well.
Taking a moment and looking around at the world, getting to your child’s level and playing with the toys that they always want to play with, watching the videos that they always want to talk about, learning as much as you can about Steve from Minecraft and playing Minecraft with your child so that you can grasp what they are talking about and can actively have a back and forth conversation that helps them feel accepted while working on social skills is always a win.
See the world as they see it
There is a video that the National Autistic Society put out called Autism TMI Virtual Reality Experience. It shows how something that can be a part of everyday life, a trip to the mall, can look to someone on the autism spectrum.
The first thing that you notice is that the child is experiencing some sensory processing difficulties as things start happening around them. Things like the sound of balloons, bright lights, things that affect all five senses and the child starts having a meltdown.
The mother in the video removes the child from the overwhelming environment, makes eye contact, talks to them in a calming way, letting them know that they are safe and helping them to take long and calming breaths, bringing the child out of being overwhelmed.
This is an eye opening video that puts people in the autistic child’s shoes and shows things from their perspective. It also demonstrated how the mother in the video uses both verbal and nonverbal communication to communicate with the child by using a calming voice while slowly using her hands to show the calm down sign.
Final thoughts
In the end most people want to be and feel accepted and our children on the autism spectrum are no different. Making sure to take the time and really get to know them and know what helps them interact in the world that is just starting to open up and really learn about autism and what it means to be autistic.
Always strive to be the calm piece in your child’s world, there are so many resources that can help parents learn ways to cope with the array of emotions that go along with being a parent of someone with autism and offer ways of learning to better understand your child’s world.
Dave Willis once said:
“There are no perfect parents, and there are no perfect children, but there are plenty of perfect moments along the way.”
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A great example is this article on the Neuroclastic Blog, where the author describes 10 things he loves about being autistic:
In this article on the Autism Help Studio Blog, an autistic mom of an autistic child explains why she loves the fact that our brains are so different:
1. Attention to detail
Autistic individuals may have a keen attention to detail. The things that other people tend to miss or not focus on, which can be helpful in many cases.
2. Strong memory
Many Autistic individuals have excellent memory skills and can recall information with great accuracy. I, in particular have a crazy strong visual memory.
3. Unique perspectives
Autistic individuals may have a unique way of looking at the world, which can lead to innovative ideas and solutions. Sometimes, there is no need to over complicate things. And we generally tend to see things in Black or White. Therefore, it makes it much easier for us to simplify a situation.
4. Intense focus
Most Autistic individuals are able to focus intensely on tasks or interests they are passionate about, leading to high levels of achievement and success. If it is something that interest us, we can spend all several consecutive all-nighters on it, easily. Without wanting to give up.
5. Honesty
Autistic individuals may have a strong sense of honesty and integrity, which can be very valuable in personal and professional relationships. Also some autistic people, tend to be unable to lie. We say what we see and speak what we know. That’s it.
6. Creativity
Many Autistic individuals are highly creative and may excel in artistic or musical pursuits. In other words, if we learn something and we like it. We will learn it really well.
7. Loyalty
People who have Autism form very strong bonds with others and exhibit a deep sense of loyalty to those they care about. We are also all about familiarity. What this means, is that once we find a person who is ‘our’ person, whether they are our safe space or close friend. We hold them dear to us. For life!
8. Black and White thinking
We tend to keep emotions out of our scenarios. For the most part. It is either a ‘yes’ or a ‘no’. Not a maybe! If something is logical and makes sense, then we go with that. We know what we want. And what we like. It really eliminates a whole guessing drama game.
9. Detail-oriented
Autistic individuals may be skilled at analyzing complex information and identifying patterns or connections that others may miss.
10. Unique talents
Many autistic individuals have unique talents or abilities that can be leveraged for personal or professional success.
According to the author: "I have a thing. Where I can memorise codes and passwords. Not by knowing the numbers. But by watching which buttons your fingers press, where the buttons are located and the sequence that you push those buttons in.
So you could torture me for a safe combination and for the life of me, I will not be able to tell you.
However, put me in front of the safe and I will open it in seconds, if I have seen you open the safe before. I am not really sure which profession that this skill would be helpful to. Other than a professional criminal maybe."
And lastly, in one of her blogposts, Autistic Mama asked the Embracing Autism Facebook Group for awesome things about being autistic. Based on their response, she created a list of 25 things that make autism awesome. Here it is:
25 Things That Make Autism Awesome
When we flap with joy.
Our love of memory games.
Our hysterical honest comments.
Our ability to stun people with facts.
We can turn anything into a toy.
Our strong sense of self.
We think outside the box.
We physically light up when excited.
We have a greater sensory experience.
We notice patterns where others miss them.
Our love of straight lines and order.
We are accepting of everyone.
We can quote every line of a movie.
The joy of our special interests.
Our empathy for the oppressed.
Our adorable crazy hair.
We appreciate silly jokes.
Our near photographic memory.
Our eternally optimistic outlook.
Our stimming when we are happy.
We see the hidden things in life that neurotypicals miss.
Our pure love without rules.
Our ability to hyperfocus.
We don’t stress about social rules.
Our unique perspective on life.
Do you identify with any of these reasons listed here? What makes your autism awesome? Spend some time this weekend to think about it. And write it down! So that you can remind yourself every now and then.
If you are not convinced yet that being autistic is awesome, here are some more articles you can read about the subject:
10 Awesome Things about having Autism Spectrum Disorder
Let’s Celebrate the Pros of Being Autistic
7 activists tell us the best thing about being autistic
Autism Can Be an 'Advantage,' Researcher Says
8 Awesome & Admirable “Autistic Personality Traits”
Autism's Hidden Gifts
Prof Simon Philip Baron-Cohen (yes, the brother of Sasha), the director of the University of Cambridge’s Autism Research Centre, explores this question in his book, The Pattern Seekers: How Autism Drives Human Invention. In the book, he argues that all human innovation stems from what he terms the ‘systemizing mechanism’ — the ability to discern and manipulate causal patterns. This cognitive mechanism, Baron-Cohen says, is particularly strong in innovators in all fields — the arts as well as the sciences — and also in people with autism, two groups that he believes have overlapped throughout history.
Autism and Intelligence
His theory is supported by Renato Polimanti and Joel Gelernter in their 2017 study, Widespread signatures of positive selection in common risk alleles associated to autism spectrum disorder. “It might be difficult to imagine why the large number of gene variants that together give rise to traits like ASD are retained in human populations — why aren’t they just eliminated by evolution?” says Prof Gelernter. “The idea is that during evolution these variants that have positive effects on cognitive function were selected, but at a cost — in this case an increased risk of autism spectrum disorders.”
Similarly, a team of researchers from Ohio State University, led by Joanne Ruthsatz found a clear correlation between the genetics of autism and high intelligence in their study, Molecular Genetic Evidence for Shared Etiology of Autism and Prodigy. According to Ruthsatz, “It was like, here it is, here’s the autism and the prodigies together and they have a significant peak on chromosome 1, where they are significantly different than their non-affected family members.” The study says that “This finding suggests that a locus on chromosome 1 increases the likelihood of both prodigy and autism in these families.”
In an article written by Bernard Crespi, of the Biological Sciences and Human Evolutionary Studies Program of Simon Fraser University in Canada, he says that the “high intelligence imbalance” hypothesis predicts that autism should be associated, at a phenotypic level, with substantiated correlates of intelligence. He reviewed several studies of the genetic overlap of autism with intelligence and found that increased sensory discrimination ability in autism represents a strong correlation to intelligence that is frequently enhanced to the point of imbalance with other aspects of IQ. Hyper-functioning of these regions may thus result in imbalanced intelligence, whereby efficient integration with downstream regions, especially parietal regions that subserve symbolism, abstraction and categorization of sensory information, becomes dysregulated.
But what about natural selection?
As autistics, we all know that there is a link between autism and high intelligence. The fact that some of us a good at maths doesn’t make the rest of the world easier.
In the 2016 meta study, Are there alternative adaptive strategies to human pro-sociality? The role of collaborative morality in the emergence of personality variation and autistic traits, by Penny Spikins, Barry Wright &Derek Hodgson, they note that we might imagine that autism would imply limited reproductive success, but state this is not the case. In modern hunter-gatherer contexts such traits are rarely of primary significance in mate choice. Amongst the Hadza for example the most significant trait affecting female mate choice is being ‘a good hunter’ Food is shared widely so that hunting prowess does not confer direct nutritional advantage to one’s kin; however, good hunters are more reproductively successful in attracting mates. Intelligence is also significant and the primary consideration for someone to be seen as ‘nice’ is not astute social skills but non-violence.
They argue that, after the rise of collaborative morality (an investment in the well-being of everyone in the group) about 100 000 years ago, a social niche arose for individuals with autism whose logic-based theory of mind was a viable alternative perceptual strategy to a ‘neurotypical’ complex theory of mind, bringing with it valued social and technical talents. The emergence of technological or social innovations which improve survival, in turn, create a niche to which the characteristics of those with autism are particularly suited.
For example, environments associated with unpredictable resources might have been particular ‘hotspots’ where traits of autism were most valued. In such situations a focus on detail and a high level of standardisation to ensure maintainability and reliability, is essential for survival, and emerging specialised roles would provide the scaffolding for such autistic traits to be developed and valued. Abilities at focusing on and providing technological solutions will have been particularly valued, especially where changing environments put survival at risk.
Crespi also argues in his study, Developmental heterochrony and the evolution of autistic perception, cognition and behaviour, that hunters had to be able to predict the patterns of game movement through the seasons (a repetitive behaviour), endure solitude while hunting (an antisocial state), and make and invent tools (a mechanical action). Thus, he hypothesized that the autistic brain is an example of an "extreme male brain" that initially evolved to cope with the demands of hunting. In hunter-gatherer societies, these traits allowed males to survive and provide for their families However, these traits no longer provide the same benefits in the context of our modern world.
Personal View
I started asking myself the question about why autism exists during all the lockdowns, when I had lots of time to observe my children and think. I’ve developed the view that maybe autism is an evolutionary back up plan. When the environmental conditions change very rapidly and actions that neurotypical people view as “safe” are no longer safe, that’s when the back up plan kicks in. Social distancing is not a problem for most of us – in fact, I suspect that my son didn’t even notice we were in lockdown for the first couple of weeks.
Perhaps all of these studies can be summarized by two quotes from Temple Grandin, in her very blunt way:
“What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”
“People talk about curing autism. But if you got rid of all those traits, who's going to make the next computer?”
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According to the latest report by the CDC (based on data collected up to 2018), ASD prevalence in the USA has increased significantly:
Autism prevalence rates in adults
Many parents discover their own neurodivergence when seeking a diagnosis for their child
Do areas with higher prevalence rates have parents who are better educated and more aware of autism? Alternatively, are these areas, with higher prevalence rates, more accepting of neurodivergence, creating an environment where seeking diagnosis and intervention is easier with less stigma? We need more research but autism prevalence does seem to be influenced by:
Causes and risk factors
Autism Parenting Magazine has done a great job here at summarizing the data reported in the USA.
Even though there is much less data available about the prevalence of ASD in South Africa, there have been some recent studies on the subject. In 2015 it was reported in a study published in the South African Journal of Childhood Education that the prevalence of children with ASD in South Africa is still unknown. This study, focusing on learners at a school for children with Autism Spectrum Disorders in Gauteng, estimated that there are about 270 000 people in SA with Autism with 5000 newly diagnosed each year. It further observes that:
Probably the most comprehensive recent study in South Africa is this one, by UCT's Centre for Autism Research in Africa, even though it was only a statistical study based on data from the WCED. Published in 2020, it looked at the prevalence of Autism in 1 million school children in the Western Cape. Some findings of the study were:
The full study is behind a paywall, but hopefully some more information can become available.
We will add more statistical information over the next weeks, including
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1. The Reason I Jump by Naoki Higashida
Amazon price: $16.20 (R485 with shipping)
This book is consistently one of the top three books in most of the lists.
Written by Naoki Higashida, a very smart, very self-aware, and very charming thirteen-year-old boy with autism, it is a one-of-a-kind memoir that demonstrates how an autistic mind thinks, feels, perceives, and responds in ways few of us can imagine. Parents and family members who never thought they could get inside the head of their autistic loved one at last have a way to break through to the curious, subtle, and complex life within.
Using an alphabet grid to painstakingly construct words, sentences, and thoughts that he is unable to speak out loud, Naoki answers even the most delicate questions that people want to know. Questions such as: “Why do people with autism talk so loudly and weirdly?” “Why do you line up your toy cars and blocks?” “Why don’t you make eye contact when you’re talking?” and “What’s the reason you jump?” (Naoki’s answer: “When I’m jumping, it’s as if my feelings are going upward to the sky.”) With disarming honesty and a generous heart, Naoki shares his unique point of view on not only autism but life itself. His insights—into the mystery of words, the wonders of laughter, and the elusiveness of memory—are so startling, so strange, and so powerful that you will never look at the world the same way again.
In his introduction, bestselling novelist David Mitchell writes that Naoki’s words allowed him to feel, for the first time, as if his own autistic child was explaining what was happening in his mind. “It is no exaggeration to say that The Reason I Jump allowed me to round a corner in our relationship.” This translation was a labor of love by David and his wife, KA Yoshida, so they’d be able to share that feeling with friends, the wider autism community, and beyond. Naoki’s book, in its beauty, truthfulness, and simplicity, is a gift to be shared.
2. Uniquely Human (A Different Way of Seeing Autism) by Barry M. Prizant
Amazon price: $11.39 (R405 with shipping)
Also consistently in every list of top books on ASD, this is the best selling book on the subject on Amazon.
Autism therapy typically focuses on ridding individuals of “autistic” symptoms such as difficulties interacting socially, problems in communicating, sensory challenges, and repetitive behavior patterns. Now Dr. Barry M. Prizant offers a new and compelling paradigm: the most successful approaches to autism don’t aim at fixing a person by eliminating symptoms, but rather seeking to understand the individual’s experience and what underlies the behavior.“
A must-read for anyone touched by autism... Dr. Prizant’s Uniquely Human is a crucial step in promoting better understanding and a more humane approach” (Associated Press). Instead of classifying “autistic” behaviors as signs of pathology, Dr. Prizant sees them as part of a range of strategies to cope with a world that feels chaotic and overwhelming. Rather than curb these behaviors, it’s better to enhance abilities, build on strengths, and offer supports that will lead to more desirable behavior and a better quality of life.
“A remarkable approach to autism....A truly impactful, necessary book” (Kirkus Reviews, starred review), Uniquely Human offers inspiration and practical advice drawn from Dr. Prizant’s four-decade career. It conveys a deep respect for people with autism and their own unique qualities. Filled with humanity and wisdom, Uniquely Human “should reassure parents and caregivers of kids with autism and any other disability that their kids are not broken, but, indeed, special” (Booklist, starred review).
3. Thinking in Pictures: My Life with Autism by Temple Grandin
Amazon price: $10.99 (R403 with shipping)
Even though she has written multiple best-selling books, we chose Thinking in Pictures to be part of our list. Temple Grandin writes as both a scientist and an autistic person. In Thinking in Pictures, she introduces her own model of analysis based on thought patterns, comparing her mind with the minds of others who, as she puts it, “think in words.” In addition to giving her first-hand account of this process, and her life in general, she addresses developments in the study of autism, genetic research, and diagnostic criteria.
This book covers Dr. Temple Grandin’s way of experiencing the world intermingled with snippets of information from her life and of autism in general. Unsurprisingly, given the title of the book, there is a big focus on her visual way of thinking and how this manifests.
Grandin is quite straightforward and honest in stating that she used to think all autistic people must think in pictures like her, and how it is only relatively recently that she has learnt that other autistic people can have different ways of thinking. The first section of the book focuses on how she thinks, and how this has affected her life both positively and negatively.
The next section moves on to talking at length about sensory processing and some of the difficulties she has experienced with areas like understanding tone or theory of mind whilst relating them to herself, other people, and general anecdotes. She continues to the subjects of empathy and experiencing emotions, presenting it in a similar way and embedding the information with snippets about real people helping to make the information much more accessible.
4. The Complete Guide to Asperger’s Syndrome by Tony Attwood
Amazon price; $23.73 (R683 with shipping)
Tony Attwood is probably the world's leading expert on Asperger's and has provided the definitive handbook and guide for anyone affected by Asperger’s syndrome. Drawing on research, case studies, and personal accounts, this book is simultaneously authoritative and accessible. It examines topics like potential indications of the syndrome, diagnosis, language development, social interaction, bullying, and ongoing mental health. It also delves into sensory sensitivities, coordination skills, and career development.
There is also an invaluable frequently asked questions chapter and a section listing useful resources for anyone wishing to find further information on a particular aspect of AS, as well as literature and educational tools.
Essential reading for families and individuals affected by AS as well as teachers, professionals and employers coming in contact with people with AS, this book should be on the bookshelf of anyone who needs to know or is interested in this complex condition.
5. Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
Amazon price: $15.99 (R515 with shipping)
This book explores in fascinating, near-encyclopedic depth how autism has evolved. It’s a gripping narrative written with journalistic verve. It combines portraits of autistic individuals with a forensic exploration of the disorder’s history and also delineates the current political and cultural battles that divide professionals and parents, self-advocates and charities.
Silberman, an American journalist, came to the subject from an unusual perspective. Most books on autism are written by practitioners, parents or people on the spectrum themselves. Silberman is none of these – he specialises in writing about technology and the digital industry for Wired magazine and the New Yorker. It was only after interviewing several Silicon Valley innovators and finding that they had autistic children that his curiosity was piqued. The resulting article, The Geek Syndrome (Wired, 2001), posited the theory that Silicon Valley had become a hot spot for autism diagnoses because nerdy programmers and engineers met there and had children while carrying a “genetic predisposition” for the disorder.
It’s long been a puzzle that two seemingly unconnected pediatricians of Austrian origin, one based in Baltimore (Leo Kanner) and the other in Vienna (Hans Asperger), simultaneously observed the unusual behaviour of children brought to them by worried parents and coined an identical label to describe them – autistic – in 1943. Silberman uses his investigative skills to find the buried connections between the two doctors, the overlaps in mentors and colleagues, as well as revealing their profound differences in approach.
Though the process he casts light on the growing movement of "neurodiversity" activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences.
Amazon price: $19.20 (R385 with shipping)
Packed with real-life stories and everyday problem-solving ideas, this book has given many tens of thousands of parents the facts they need about high-functioning autism spectrum disorder (ASD), including Asperger syndrome. The authors are leading experts who describe ways to work with these kids' unique impairments and capabilities so they can grow into happy, self-sufficient adults.
Parents learn practical strategies for helping their son or daughter relate more comfortably to peers, learn the rules of appropriate behavior, and succeed in school. The book also discusses what scientists currently know about ASD and how it is diagnosed, as well as what treatments and educational supports have been shown to work. Updated with the latest research, resources, and clinical strategies, the second edition clearly explains the changes in diagnostic criteria over the past couple of years.
Amazon price: $19.94 (R575 with shipping)
Being a teen or tween isn't easy for anyone but it can be especially tough for Asperkids. Jennifer O'Toole knows; she was one! This book is a top secret guide to all of the hidden social rules in life that often seem strange and confusing to young people with Asperger syndrome.
The Asperkid's (Secret) Book of Social Rules offers witty and wise insights into baffling social codes such as making and keeping friends, blending in versus standing out from the crowd, and common conversation pitfalls. Chock full of illustrations, logical explanations, and comic strip practice sessions, this is the handbook that every adult Aspie wishes they'd had growing up.
Ideal for all 10-17 year olds with Asperger syndrome, this book provides inside information on over thirty social rules in bite-sized chunks that older children will enjoy, understand, and most importantly use daily to navigate the mysterious world around them.
Amazon price: $13.49 (R445 with shipping)
The complete guide to connecting with adults on the autism spectrum. For a friend, family member, or co-worker with high functioning autism, communication can be challenging. But Connecting with the Autism Spectrum can help you find common ground with expert tips and helpful insights about talking (and listening) to neurodiverse adults so you can make your interactions more transparent, meaningful, and rewarding for all.
Written by Casey Vormer, a self-taught artist and high functioning autism advocate, this comprehensive guide is a trusted source to understanding neurodiversity, a brief introduction to the autism spectrum, and easy communication strategies like active listening and positive encouragement as well as steps to avoid misunderstandings by teaching how to recognize biases and correct them.
This standout selection on working alongside others with high functioning autism delivers:
A simple approach—Discover the best ways to communicate with those living with high functioning autism.
Situational success—Find the right information for various situations and settings, including school, work, and social relationships.
Sensitive tone—Get valuable information from a clear, honest point-of-view that does not seek to “cure” or manipulate people with high functioning autism.
Learn how to communicate better with those diagnosed with high functioning autism in this simple book.
9. Navigating Autism: 9 Mindsets For Helping Kids on the Spectrum by Temple Grandin, Debra Moore
Amazon price: $14.95 (R510 with shipping)
Empowering strategies for anyone who works with children and teens on the spectrum. International best-selling writer and autist Temple Grandin joins psychologist Debra Moore in presenting nine strengths-based mindsets necessary to successfully work with young people on the autism spectrum. Examples and stories bring the approaches to life, and detailed suggestions and checklists help readers put them to practical use.
Temple Grandin shares her own personal experiences and anecdotes from parents and professionals who have sought her advice, while Debra Moore draws on more than three decades of work as a psychologist with kids on the spectrum and those who love and care for them. So many people support the lives of these kids, and this book is for all of them: teachers; special education staff; mental health clinicians; physical, occupational, and speech therapists; parents; and anyone interacting with autistic children or teens. Readers will come away with new, empowering mindsets they can apply to develop the full potential of every child.
10. All My Stripes: A Story for Children with Autism by Shaina Rudolph and Danielle Royer
Amazon price: $14.38 (R475 with shipping)
In this children’s book by Shaina Rudolph and Danielle Royer, Zane the zebra has autism, and he worries that his differences make him stand out in a bad way. Through his mother, he learns about the many things that make him and the other kids special, including but not nearly limited to his autism. Ultimately, it’s a book to teach children to embrace who they are but love others for their differences.
I'm going to stop there for now. If there are any books that you found valuable, let us know. Other books that are highly rated are:
Population One: Autism, Adversity, and the Will to Succeed by Tyler McNamer
In a Different Key: The Story of Autism Paperback by John Donvan and Caren Zucker
Autism in Heels: The Untold Story of a Female Life on the Spectrum by Jennifer Cook O'Toole
Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family by Jude Welton
Positive Parenting for Autism: Powerful Strategies to Help Your Child Overcome Challenges and Thrive by Victoria Boone
Look Me in the Eye: My Life with Asperger's by John Elder Robison
We're Not Broken: Changing the Autism Conversation by Eric Garcia
Here are some more lists:
https://www.choosingtherapy.com/autism-books/
https://www.appliedbehavioranalysisprograms.com/30-best-childrens-books-about-the-autism-spectrum/
https://www.andnextcomesl.com/2015/11/best-autism-books.html
https://bookauthority.org/books/new-autism-books
https://www.purewow.com/family/autism-books
https://www.independent.co.uk/extras/indybest/books/best-books-about-autism-a8712096.html
https://www.aapcautismbooks.com/blog/13-mustread-autism-books-for-parents-in-2022/
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The NDC is made up of a dedicated team of Clinical- and Educational Psychologists, Child and Adolescent Psychiatry and Adult Psychiatry, Developmental Paediatrics, Speech and Language Therapy, and Educational Specialists.
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When my son was diagnosed with autism, I really didn’t know anyone with a child with autism. I didn’t know people with autism (or so I thought). It’s a very isolating and confusing place to be. This is one of the many reasons I share our autism journey. I don’t want any other family to feel that they are alone out there. I want them to know there is someone who they can ask questions of, someone who will do their best to help.
What would I have done differently?
I would have worried less about a lot of things. He couldn’t write at all at age five when he was diagnosed. His speech was still a work in progress. When doctors would ask if my son met his developmental milestones on time, I always reply “sort of.” He started learning to talk, walk, and everything else on time. He just took a lot longer (like years…) to finish honing those skills than other children.
Knowing that maturation happens at different times with different children, if I would have let myself believe that, I would have saved myself a lot of time grief. My son can write just fine now (albeit slow), he can talk and has a voluminous vocabulary, he can walk (albeit is still liable at times to walk into walls or stumble). His progress is slow but he does progress. (If I could just get current me, to listen to old me about not worrying as much…)
What would I recommend doing?
First, get on the wait list for ABA (applied behavior analysis) therapy ASAP. The wait lists are usually very long but this is the one therapy that is worth the wait and has helped the most when we could get it. In the meantime, occupational therapy (OT), physical therapy (PT), speech therapy, equine therapy, and aquatic therapy depending on your child’s needs are good places to start and can be helpful. Discuss these options with your pediatrician.
Second, take the time to grieve and process the diagnosis. Know that your significant other will likely process the news completely differently than you and in their own time. Give them the time and space to do that. Take time to spend time with and love on your child. This is still your child no matter what diagnosis the doctor throws at you. Your dreams for this child just might have to take a little bit of a course correction.
Third, take care of you. This is going to be a marathon, it is not a sprint. You need to conserve your energy. Taking care of you means not just indulging in your favorite treat (though I do recommend it on occasion), but taking your vitamins, finding time to for prayer or meditation, seeking ways to help you grow. This is what is going to help you survive the grueling days ahead of you. This is what is going to give you the strength to continue to fight on to help your child. If you don’t take time for this, you will crash and burn. Trust me, I’ve crashed and burned a few times. Slow and steady wins this race. You’ve got this.
Calleen Petersen says she’s an ordinary mom who has a child with autism, and a husband in law enforcement and the military. She spends her spare time advocating for special needs families. Calleen writes about her family’s life and her thoughts while residing in Washington State.
Website: www.anordinarymomweb.wordpress.com
Facebook: www.facebook.com/AnOrdinaryMom1
Email: lollielean@hotmail.com
YouTube: www.youtube.com/channel/UCHgwYXOj2mpQZkvP259mNUg?view=
Pinterest: www.pinterest.com/lollielean/pins
Twitter: An Ordinary Mom @CalleenPetersen
This article from Autism Parenting Magazine was featured in Issue 82 – Finding Peace This Season
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Most of all, remember that your love and acceptance for your child is what matters most.
Taken from the 1 Autism Dad blog, by Michael, Colin's dad. Colin is autistic and awesome.
]]>Since this has happened more than a few times, I thought I'd compile some of the thoughts I've shared with these parents over the past few years into one list, in no particular order:
Most of all, remember that your love and acceptance for your child is what matters most.
Taken from the 1 Autism Dad blog, by Michael, Colin's dad. Colin is autistic and awesome.
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