Become a Better Ally: 23 Things I Wished I Knew About Autism When My Child Was Diagnosed

June 18 is Autism Pride Day. Autism Pride celebrates the beauty of neurodivergence and all the possibility it brings to the world. This post is intended to help us all be better allies to the neurodivergent community, today and every day. Here are 23 things I wished I had known five years ago in order to be a better ally to my child and autistic community members.

The intended audience of this post is for everyone, especially neurotypical (NT) parents, siblings, educators, peers, co-workers, policy makers, bosses, and caregivers who want to support autistic people.

Also to the neurodiverse (ND)/ #actuallyautistic people, I hope I got this right. If I didn’t or missed something important, please tell me!

1. Can you define autism, right now? If you can’t, then you probably don’t know much.

When it was suggested that my one and a half year old might be autistic, I was paralyzed with fear. How in the world would I help my child? Where do I start? I cannot remember the exact moment when it happened, but at one point the epiphany came: I knew NOTHING about autism and this ignorance filled me with dread and fear. Once I was able to define autism without googling it, the anxiety began to subside. I became receptive to learning more and better equipped to help my child. Start with a definition and by observing and learning, rather than relying on my ignorant presumptions. when I did that, I ceased to worry about all I didn’t know. Then grow from there.

2. Autistic is not a bad word, so don’t act like it. You’re allowed to say autistic. In fact, most people on the spectrum prefer this phrasing because their neurology impacts their entire life experience. However, not all autistic people prefer this. Want to know what to do? Ask the person what they prefer! Does it feel weird to ask them? That might be because you think of it as an insult. Autistic is a type of brilliant neurodivergence. It’s not an insult. If you still feel weird about it may mean…

3. One’s level of (dis)comfort when discussing autism indicates how much learning needs to happen. So learn! I’ve written about it here on the blog, but also follow the hashtag #actuallyautistic to learn about autism from autistic adults. I share many of my faithful resources on my Instagram @sensationalstims.

4. Tell your child ASAP. Do not hesitate to tell your child. Why?

A. Hiding an autism diagnosis implies there is something to be ashamed of. I assure you there is not.

B. If you feel ashamed, you need to seek help. I say that with the utmost love and kindness. Lots of folks who have a neurodivergent child learn about their own neurodivergence and/or suppressed traumatic past. Seek help. You’re not too busy for this. There is no shame and taking care of yourself is important! A healthy ally is an effective ally!

C. Your child is amazing and learning from your them is a wonderful way to learn about what autism means for your child.

D. Most autistic people who were diagnosed as adults will tell you they’ve always known they were different than neurotypical peers. Your child likely already knows there’s something different- use the right words to explain it!

E. Understanding different needs significantly reduces stress on the neurodivergent person (and neurotypical people, too).

F. Tell siblings and people living in the house, too. Why? Because you live together! It’s helpful to know about family members’ different needs.

5. Stimming is important! Autistic people have a different sensory processing system. Stimming is a way to deal and cope with different sensory needs. Check out my book about stimming. It’s an enlightening, sweet book about allyship and authentically represents what stimming is. From now until July 18th, we are having a BOGO special so you can keep one and share another!

6. Some people will absolutely break your heart in their unwillingness to make the world more inclusive. As you become more aware about autism needs, some responses from family, friends, even medical practitioners may surprise you. Trusted people might be ignorant which translate to mean, ugly things. It hurts. It’s confusing. Sometimes you will need to let those people go and sometimes you can educate them. I’ve been on the giving and receiving end of this experience and it’s rough. But I also have learned so much from my mistakes and from transgressions committed against me and my child.

7. Some people will restore your faith in humanity. Cherish those kind, loving people. Remember them instead of the heartbreakers. Become this person. I’ve also been on the giving and receiving end of this experience, too, and it’s all I ever need in the world.

8. “Curing” autism is wrong. There are MANY outlets that want to “cure” autism. This is highly offensive. I was looking through all the notes I have taken over the past 5 years and early on in my journey I went to a training called “Fighting Autism with [insert the name of quack doctor here].” Autism is the way a person is. Acceptance is the only cure needed. If you want to “fight” the way a person is, it’s a traumatizing, abusive approach.

I shudder at some of the “professional” advice I paid for, believed, and followed. However, there are things you can do to support an autistic person to help them experience the world in a healthier way. For example, food tremendously impacts a person’s overall health. A common experience for NDs with sensory sensitivities is that they struggle to physically tolerate certain foods. Uniform tastes/textures tend to be preferred and this uniformity is a guarantee in highly processed foods. But highly processed foods have unquestionably adverse health effects. There are therapies and support for this that I’ll share about later. Learn from professionals about ways to work with sensitive palates so your loved one can be healthy, and also have their legitimate needs met!

9. You may have feelings of guilt the more you learn about autistic people and their needs. Some may feel guilty with regards to their attitude. Others might realize therapies/trainings attended in the name of helping were actually traumatizing the one you intended to support. I know I have struggled with this immensely. All I can say is that when you know better, you do better. Guilt and shame help no one. Move forward by acknowledging your mistake and vow to do better by first listening to autistic voices.

10. A litmus to discover if a training/therapy is appropriate or not: replace “autism” with another group’s name and see how it sounds. Here’s what I mean: I am able to tell by using a different noun instead of “autistic” in the description of the proposed training/therapy if it is problematic or not. I share this because it is often overwhelming to learn, implement, and adapt to a person’s special needs. It’s also expensive and very time consuming; most parents don’t know where to start or what to do.

For example, instead of the aforementioned “Fighting Autism with Dr. Quackenstein” training I attended (see tip #8), I replaced the word “autism” with the word “Latinos”, and said it aloud. Let’s see how it sounds: “Fighting Latinos with Dr. Quackenstein”. Wow!

It immediately sounds wrong. You can do it with any noun you prefer and prepare to be amazed and how awful really intelligent people can be.

11. Don’t use the terms “high functioning” or Asperger’s. The implications of these terms are laden with ableism. Autistic people have varying support needs that fluctuate over time, so instead of “high functioning” (because we have no clue how much effort/work it takes for an autistic person to be perceived as ‘high functioning’ aka neurotypical), it’s much better to say describe a person’s support needs. For example, “Sally has low support needs in the area of math, but high support needs in executive functioning skills.”

Asperger’s is often used as a synonym for high functioning and implies that a person is only a smidge autistic. Actually, Asperger is the last name of a Nazi doctor who did terrible things during WWII, including murder children. Also, Asperger’s (since 2013) is no longer a recognized label on the DSM-5. That’s because…

12. A person is either autistic or not autistic. Similar to being pregnant, you can’t be it a little or a lot. People are autistic or not. While neurotypical people may have some autistic traits because autistic traits are human traits, we are not all a “little bit autistic.” Just like you would never say to a that because you and and a pregnant lady both have lower back pain that “we’re all a little bit pregnant”, don’t say “oh we’re all a little autistic” to an autistic person. It’s rude, untrue and not perceived as the sweet bond you think it might be. Also unlike pregnancy, autism is lifelong. A person cannot outgrow autism. Which leads me to my next point…

13. Autistic children become autistic adults. The autism spectrum is wide and depending on a person’s access to healthcare, support systems, intellectual capabilities, unique life experience, geographic location, gender, culture, socio-economic status, etc., the presentation of Autism and support needs will vary. But autism doesn’t go away with age. And since autism cannot be detected purely by visual cues, it’s always best to just recognize that sometimes people need help whether they have a diagnosis or not.

Getting an official diagnosis is a privilege. It takes a lot of clinical experts to get a diagnosis and it takes a long time to do. Usually people who can afford health care get this, while many others don’t. Respect those who have had obtained an official diagnosis and those who cannot afford one.

14. There will be awkward moments. Communication differences often cause social distress for both neurodivergent and neurotypical folks. Always presume competence and recognize that everyone is doing the best they can.

Most often, because communication styles differ, neurotypical people often feel offended by an autistic person’s linguistic faux pas. Because a NT usually has the social power, they are the ones typically considered “right”.

Neurotypicals, remember the inherited the privilege of being born neurotypical. It’s significantly easier for you to understand the social nuances of the NT world that impact every element of life.

As a parent who routinely finds myself in extremely awkward situations with my child and another person, I can assure you we’ve never died from it. Lean into the awkward.

15. If you’re not sure why an autistic person says/does/thinks a certain way?: ASK! My entire world shifted when I realized there are autistic people who are more than happy to share their insights and experiences and often do so for FREE!

There is no better expert on what autism is than asking an actually autistic person. Better than even asking, simply listen and learn! I follow the hashtag #actuallyautistic as well as a variety of specific accounts. This was especially helpful when my son was preverbal. These adults’ stories, wisdom, and knowledge stunned me. If you follow @sensationalstims, I share many helpful tips from a variety of accounts.

Bonus: I now get to ask my own child about his needs, preferences, and experiences.

16. There are lots of ways to communicate. Many autistic people struggle to converse verbally, but AAC (Augmentative and Alternative Communication) devices, sign language, writing, and behaviors are all legitimate, helpful ways to communicate. If you know of an autistic person who struggles with speech, find other avenues to connect and resist the urge to only value spoken language.

Also, depending on the stress load a neurodivergent person is under, sometimes the capacity to communicate verbally significantly declines. So if a neurodivergent person doesn’t answer right away, even if they usually speak, this may be due to other mitigating factors.

Neurodivergent folks often shed a light on problematic social practices and confusing figures of speech by acknowledging (or not acknowledging) certain social things. Instead of writing off these unique observations/behaviors as idiocy, the kind thing to do is either to explain why something is a certain way or acknowledge that while something might not be entirely practical, discuss how to handle the social situation in a socially acceptable way.

Additionally, what neurotypicals may label as rude might feel direct to a person on the spectrum.

17. Neurodivergent Love Languages. I saw this tweet from Amythest (@neurowonderful) and need to directly quote it: “The five neurodivergent love languages: infodumping, parallel play, support swapping, Please Crush My Soul Back Into My Body, and ‘I found this cool rock/button/leaf/etc. and I thought you would like it”. These terms all relate to different, sacred ways a neurodivergent person might share their platonic or romantic affections. If an ND shares love with you in a unique way, feel honored because many autistic people have learned to mask their true self due to negative social consequences. Also, these ways to share love are not ONLY for NDs, but they tend to be more common for NDs than NTs.

18. Be EXTREMELY careful when financially supporting autism foundations. When it comes to autism research, not all foundations are created equal. Many of these places have worked to eradicate autism (read: practice eugenics). Here are good ways to tell if a foundation is worthy of your money:

A. They hire autistic people to learn about autism and the autistic experience.

B. They find ways to support autistic peoples’ needs, not suppress, mask, or force compliance and proudly share it with their supporters.

C. They do not infantilize autistics or view autism as a tragedy or disease to overcome, but celebrate the beauty of the neurodivergent mind and all the possibility it brings to the world.

D. Though autism rates are on the rise, it remains one of the lowest funded areas of study in the United States. It’s important to think about who we fund and who we don’t in the process of rectifying this sad fact.

19. Your attitude and language matters: be mindful of the words you use. How you act and talk about a person’s neurology will significantly impact their life experience. Much of the anxiety and depression autistic people experience are due to trauma, not autism.

20. Autistic/ Neurodivergent people live in a neurotypical world; they are usually not in positions of power. It can be very challenging, complicated, confusing and exhausting. Just because some things might be obvious/simple/easy for an NT does not make it so for ND people, who are almost ALWAYS required to make an adjustment, not the neurotypical person in a position of power. If you want to be an ally, explain things simply and give people time to adjust. Pro tip: these approaches are helpful for nearly all humans!

21. Pathologizing differences is wrong. A common reason family’s fear an autism diagnosis is because it is often pathologized or phrased in ways that are similar to life-threatening illness. Here’s a common one: Know the signs of autism and get treatment right away!

I’m sorry, am I looking for a neurological difference or stroke signals?

Often, typical autistic traits are listed like symptoms which freak out inexperienced parents! For example, lining up toys is a common identifier when starting the path to diagnosis. Is this type of play inherently bad? Of course not! However, recognizing and diagnosing autistic traits helps people get appropriate services and assistance.

22. Address needs without attaching judgement. An ally does not judge another’s need, but accepts what it is and helps meet the need.

Sometimes autistic people are gifted at things that you might not value, and not very good at things you have determined are necessary. Please resist the urge to shame a person for engaging in “immature” play, or “hyper-fixating” on something you don’t care about.

There are things that autistic people will need to learn that might have been simple/easy for you or other neurotypical children. So what? If you find yourself saying things like, “she should know how to do this by now!” or “this is so easy why can’t you just do it this??” Or “be more flexible- why do you care so much?!” These shaming statements do not support or affirm an autistic person, but encourage masking and burnout.

Remember that milestones can come at varying ages and give people time to develop skills and have a healthy life experience.

23. Celebrate neurodiversity today and every day! I am so thankful to live in a world that is beginning to tap into the power of neurodivergence. The more we learn about different manners to solving problems, viewing the world, and our own unique needs, the better of we will be.

Thank you for reading. I hope this all helps us be better allies to the growing neurodivergent community. Please share and don’t forget to follow @sensationalstims on Instagram and Facebook!

I honestly could add more, but I tried to write the most important aspects that helped my family. Is there anything I missed or something you found interesting? Tell me!

Autism Acceptance Begins with Autism Awareness: Stimming

John Steinbeck once said, “I wonder how many people I’ve looked at all my life and never seen.” How true that statement still is.

Today I want to discuss autism acceptance and how society looks at but doesn’t actually see what autism actually is. I suspect this is because everyone has heard of autism but few can actually explain what it is. This is a problem and this post is designed to help fix that. Today I share with you how I came to authentically understand the beauty of neurodiversity.

I hope this piece helps you be an effective ally for any neurodiverse person, but especially for autistic people.

Right now in America, 1 in 5 autistic teens will be stopped and questioned by police before age 21 for suspicious activity. People with disabilities, including autism, are five times more likely to be jailed than those without disabilities. This is a problem that you should care about.

“But what if I don’t know anyone who is autistic?”, you may ask.

I understand that stance because I once had a similar view. Today, I have a big favor to ask: read this like the person you love most in the world was recently diagnosed as autistic.

Today, 1 in 54 people are autistic. Statistically, you’ll know someone who is autistic and it might not look like what you think it should. Because as I noted earlier, most people are familiar with the word, many could not explain what it means, what it looks like, why it happens, or what supports are needed to help people on the spectrum thrive.

The truth is I would not have made this effort if it were not for the sake of my own child who was diagnosed about 6 years ago. I also know I am typical in this way; I don’t generally care until I see how it affects me.

For the sake of safety and inclusion, I beg you to continue reading because I selfishly want help my own child and because I know your understanding will help many others as well.

If you couldn’t even imagine a loved one being autistic, I invite you to pause and think about why not. If you couldn’t even visualize it,that’s ok; it just means you were like me and you really don’t understand autism. Either way, I hope you will keep reading.

Autism rates are on the rise. In special education support group, the presenter warned that public education teachers like me are going to have many neurodiverse students in their classrooms in the near future and are not prepared. I felt a sinking feeling in the pit of my gut. I knew I was not prepared. “What is autism anyway and how would it look in a classroom?”, I worried. I couldn’t even imagine a class with three or four neurodiverse children.

After having a child on the spectrum, I also realized my own son would be in a series of classrooms and other social situations where teachers and other citizens would not be able to help him adequately unless we all got a similar understanding of what autism meant. 

It’s all so overwhelming. Who should be the one to help with this?

First, Autism is nothing to be cured or feared. This point of this post is primarily to help us understand the way we discuss neurodiversity matters. Once we become aware of how language impacts understanding, then we can become effective allies. 

Many parents like me generally fear an autism diagnosis. Below is an abstract written by Patricia Braus in 2017 in an academic journal to demonstrate why:

Autism is a profound neural development disorder marked by an inability to communicate and interact with others. The condition’s characteristics include language abnormalities, restricted and repetitive interests, and the appearance of these characteristics in early childhood. The disorder begins in infancy, but typically is not diagnosed until ages two to five years. Although individuals with autism are more likely to have severe intellectual disabilities than other individuals, some people with the disorder have a high intelligence level. The cause of autism is unknown although it is probably biological in origin.

Wow. Those are some scary words written by an academic expert in a position of power. No wonder people get freaked out when they hear the A-word. I have no doubt Braus is an expert, but her language is problematic right at the start of the report. Instead of wasting time unpacking the irritating and harmful semantics happening, today I am just going to tell you the answer:

Autism is not a terminal disease but it’s often treated like that because of how “experts” like Braus talks about it. “Tell-tale signs” or “symptoms” are not called traits. When you learn about autism from people who are actually autistic, rather than those who are “experts” because they’re written reports about and observed autism, your understanding will profoundly change for the better.

How will your understanding change if you learn from autistic people about autism?:

Instead of fearing this “mysterious” puzzle-like situation going on (as it is often presented by clinicians), there are many autistic adults who are proud of who they are and gladly share their stories with you. Search #actuallyautistic on any social media platform and prepare to be amazed. Many autistic people are incredibly articulate and often their “inability to communicate with others” was actually just a misinterpretation on the part of people in power, like Braus. But I implore you, please just listen.

Process later.

And don’t argue with the real experts about what being autistic means. Only autistic people are in a place to explain their experience.

Many of my perceptions and fears about autism were unfounded because I took a clinical approach. Autism is still medically referred to as a disorder (Autism Spectrum Disorder), not a different operating system (think Mac vs PC). In your quest for information about autism you might not “see” any answers because of an inappropriate approach that autism is a disorder. It’s not. It’s just a different order than many people are accustomed to. I now refuse to call autism a disorder. Autistic people are in perfectly fine order. I just didn’t comprehend what I was looking at because I spent way too many hours reading clinical studies about how different it was from a specific neurotypical standard that was set by neurotypicals.

Accepting and harnessing the power of neurodiversity will help solve a lot of society’s problems.  I’ll tell you more about that in another post, but today I need to talk about something more pressing: the safety of autistic people

Before I begin, I must note that I struggle to critique people in positions of power because I know at the end of the day, we are all doing the best we can. I am not anti-police, anti-medicine, anti-teachers, anti-psychologists- I am not anti-anyone. But I am unapologetically pro-safety, especially when it comes to my own child. Lots of people are aware of autism but it’s very obvious many do not accept autism. We need acceptance so parents can help their children thrive, so doctors can authentically support their patients, teachers help empower their students, and law enforcement do a more effective job when working with autistic people.

We need not just autism awareness, but autism acceptance. You cannot accept what you don’t understand, so the point of this post is to help us understand autism a bit better, nothing more, and nothing less.

Autism accetpance would have helped the Utah officers who shot 13-year-old Linden Cameron eleven times. Eleven. Times. I wasn’t there when Linden was shot eleven times, but I bet this 13-year old was stimming in public.

Why was this 13-year-old was shot eleven times? More likely than not, officers didn’t know what they were looking at and felt threatened because of their ignorance. Stimming can seem scary. Especially if you hear lots of sounds and noises and don’t know these are simply a very important way some people need to regulate their senses. I hope you can understand why parents like me, who are also parents of Linden, would want people in positions of power to genuinely understand the autism spectrum.

It’s the same reason Elijah McClain, a young black man who “looked sketchy” (that is an actual quote from an officer involved), was ultimately was killed through events orchestrated by law enforcement. It happened because of Elijah’s unusual appearance.

If we just accept that getting riddled with bullets is simply a part of life, we are doomed. It’s not normal, so don’t act like it. You can be outraged that this happened and still want to work with police so that this never happens again. And by the way, this doesn’t just happen with police. Abuse by parents, caretakers, educators, random people also happen daily.

But of the most pressing importance is that people in positions of power are stressed out when they see neurodiverse people regulate their senses in public. A major reason for the stress – which manifests in fear- is because these powerful people are uninformed/miseducated. So let’s inform people properly so that everyone can interpret what they see correctly and help everyone thrive. But you can’t be informed if you judge stimming to be something to be “cured” or deem it rude and something to suppress.

Stimming can look like rocking back and forth, flapping hands, making noises. My son often stims by galloping back and forth and making grunting or squealing noises. The purpose of stimming is to work through a sensory or stimulating experience. That’s what my book The Case of Sensational Stims is about. You can pre-order it here until May 1, 2021.

Stimming is a common behavior of many people, especially autistic people. It is often confused for “antisocial” or “suspicious” behavior that needs to be stopped. When adult autistic people stim, it is often interpreted as a person on drugs, which might be one reason why they are more likely to be apprehended by law enforcement.

My own child tends to stim more when he is anxious or excited. He often takes a second to stop or respond if he needs to answer a question, and I can clearly see how someone like him could get in trouble by the police. Depending on the intensity and nature of the stim, it is difficult for him to immediately stop or listen to a verbal command. I wrote The Case of Sensational Stims to address stimming. I did not want my son to have the same fate as Linden or Elijah. That’s the real, selfish reason I wrote this book.

But on a more positive note, it’s a happy book that celebrates stimming for what it is: a way to regulate one’s sensory experience and needs. Special sensory needs are nothing to be ashamed of. They simply need to be understood.

I also don’t believe in the concept that there are “other people’s children”. Linden and Elijah deserved safety. My son will be one of the most vulnerable in society because he is not in the majority class of neurotypical. People in incredible positions of power like the officers who shot Linden did the opposite of creating a safe environment. I don’t think they intentionally set out to harm an autistic child. They didn’t know what they were looking at. We have an education problem that can be fixed. But please, do not waste your time defending these officers. To do so would be to normalize shooting children. That’s lunacy. If you feel the strong urge to do that, this is not the place for you.

I wrote this post and my children’s book to fill the gaping, dangerous abyss that exists because people in positions of power do not understand some basic things that are critically important for the safety of neurodiverse people.

To be an effective advocate I needed to do the painful unlearning of some serious misperceptions, just as I am asking others to do. The Case of Sensational Stims, a children’s book I wrote to educate all of society about the importance of stimming is the result of my unlearning. It’s founded in my new education from resources written by autistic people as well as from my time spent in a classroom and learning about my child’s and my own neurodiversity.

My son’s “mysterious” needs are actually very relatable when I took the time to just listen to those who had similar needs. Typical behaviors of autistic children often begin with a question rooted in dismay (e.g. “why is he lining up his trucks!?”, or “why does she cry when I give her a bath!?”, “why does he keep saying the same words over and over!?”) and these same observations are often problematized by clinicians. Most of this unusual behavior is not harmful, but it certainly is different. And obviously, some stimming can be harmful if a person is banging their head against a wall or picking themselves until they bleed. My son often would bite hard things like bed posts and banisters. Something about the pressure on his teeth felt really good, but I feared he would only have nubs for teeth and all of my wood surfaces would have bite marks. We eventually learned about chewlery, got him a few options, and behold! His teeth are safe and so is my furniture! It was also very encouraging to know that this was a common need and that there were stimming tools to help my child with his unique sensory needs.

This realization took many months of agonizing over what I was doing wrong to make him want to bite hard surfaces. The answer was nothing! His sensory needs had nothing to do with our parenting. Relief!

But many well-meaning people try to “teach” their child how to stop regulating themselves if it is not socially acceptable. Instead of encouraging others to repress their stims, we need to discover what the root of the stim is and if necessary, help replace with healthy, safe behaviors. Stimming is an important means of regulation and supressing it causes burnout and meltdowns.

Before I knew better, I pathologized stimming. “He can’t keep moving around while we are at a restaurant!”, I would proclaim. I viewed my son’s behaviors like a tumor growing on his body, but if I am really honest, this was mainly because I knew others were judging his behavior and I felt ashamed and embarrassed. When I changed where I obtained my information, I gained a newfound perspective that empowered me to become a better parent to my child and teacher of neurodiverse students. I quit caring about judgement because I had clues about why he was behaving certain ways.

I realize now that all forms of behavior from all people, both neurodiverse and neurotypical, are important forms of communication. My son’s “unusual” behaviors serve a very meaningful purpose. For the first time, I saw beauty and wonder at his behavior like most parents of young neurotypical children do (instead of the chronic anxiety and dread I previously experienced when I saw him stim). And certain behaviors like running back and forth incessantly- one of his stims that led me to the path of diagnosis- was an indicator that he was regulating himself due to environmental stress. I was finally able to see it for what it was (for him, this was due to loud noise that hurt his ears). I now could support him appropriately (we use ear plugs/ defenders, or sometimes we just leave if it’s too loud). It was a miraculous yet simple discovery. I didn’t have to judge his behavior nor worry how others would feel about my child “running amuck” in a restaurant when he was really just soothing himself.

Getting information from the right sources is critical. Everything seemed to “fit together” when autism was explained to me by autistic adults (but no, for the record I don’t use the puzzle piece to symbolize autism and here’s why). I no longer hoped my son would “learn better” or “be different”. There was nothing to mourn; he just needed a specific kind of support that I knew nothing about. Everything came into focus, but I wasted critical formative years on a clinical approach to autism. If this post can prevent one parent from the agony or one child from the misery, my effort here will not have been wasted.

My transformational understanding is not overly optimistic nor does it discredit the real challenges and concerns that accompany those with special needs. But caregivers, whenever an “expert” pathologizes an unusual or undesired behavior or says it’s a manipulative, conscious decision made by your neurodiverse child, I tell you without hesitation seek a different advisor: your “expert” is a hack.

Advocating effectively is difficult. I’m not sure I’ll ever get to the final destination of total inclusion and societal harmony. I also know I make mistakes even though I’m trying my best. I’m sure some reader will be offended by something I’ve written here and inform me what a piece of trash I am because of the way I worded something. I’m fully anticipating it and ready to do better once I know better (also I will leave room for the possibility that sometimes keyboard crusaders can be wrong).

If we want a healthy, thriving, conscious society, we need to call things by their proper names and take time to genuinely learn about what we don’t understand. Just because you can “see” something, as Steinbeck noted, does not mean you actually understand what you are looking at.

At the very least, we need to believe people -all people- when they share their experiences. And if you haven’t made yourself uncomfortable by getting to know the person –not the topic– maybe that’s where you should first begin. It’s important to support where we can, and genuinely ask questions with the intent to understand. It takes time to look, see, and interpret. You might have to unlearn some things. That’s ok. This courageous decision is an investment of your precious energy. I can promise you though, the reward is worth it. 

If you would like to pre-order a copy of The Case of Sensational Stims you can do so here until May 1, 2021. After that it will be available on Amazon in May. 

Vanity of Vanities

I once went to an interfaith event where a rabbi briefly discussed an excerpt from Ecclesiastes:

Vanity of vanities, says the Preacher, vanity of vanities! All is vanity. What does man gain by all the toil at which he toils under the sun?

Sometimes when I read this above verse from Ecclesiastes or related writings, I feel frustration at the lot of human existence and the futility of it all. I especially feel this way when look at the state of America and how the powerful and weak respond to challenges.

Also, the fragility of life has been on my mind frequently. A few young friends of mine have recently passed in very tragic ways. Another friend in his 30s has a very serious medical condition that for the moment has left him debilitated. All of these people have young families. In these past few weeks, I have once knowingly and once unknowingly worked with teenagers who determined the world would be better without them here. It’s these occurences that remind me of this scripture.

In English the word vanity has an extremely selfish implication. The rabbi explained that “vanity”, commonly used in English translations, is not the best word choice to interpret the passage. It’s true. “Vanity” does not help me see the wisdom buried in this verse. The rabbi went on that a better translation would be the word vapor or breath. He asked the group to think about breathing on a mirror- how the breath is there, then vanishes. He said that’s more the original intention.

Vapor is there and in a flash, is gone- kind of like life is. When I replace the word “vanity” to “vapor” in this excerpt, I see and feel something different. One word changes the whole meaning for me.

Somehow my mind opens up with this new word. I am reminded of an October a few years ago when my grandfather celebrated his 94th birthday. At nearly midnight that same day, a baby boy was also born into my family. One lived through The Great Depression and one will likely hold multiple jobs that don’t even exist yet.
Here we have two beings at total different phases of the life cycle, but both amazingly magnificent. Totally different, but they both began the same way. And though taboo to mention, they will both end, too.

Every day I get up and essentially do the same things- I eat, I bathe, often I laugh, sometimes I cry. I breathe in, then out. I sleep. I live a lifetime in a day. I do everything to get to a certain point, yet still seem to always stay in the same place. I try my best and am still my imperfect self. Every day. It’s miraculous.

I breathe in. I breathe out.

I am here now and then I won’t be.

It’s worth noting that Ecclesiastes continues:


9 What has been is what will be, and what has been done is what will be done, and there is nothing new under the sun. 10 Is there a thing of which it is said, “See, this is new”? It has been already in the ages before us. 11 There is no remembrance of former things…

It is tempting to read this and say everything we do is futile and ultimately selfish. But I think that interpretation would be in vain. There are some new things, after all. I think about medical progress and how we can successfully operate on the brain, a luxury millions of prior generations did not have. But still, those same millions have helped us get to where we are today.

But maybe that’s not what this scripture is about. Maybe this verse is how each person must live their unique life cycle. With that comes the good and bad, joy and heartache, gain and loss, sickness and health. These ebbs and flows are our life’s cycle. Collectively, yes, humankind should do things differently and learn from our history as those who practice medicine try to do. It seems as a global group, we are unable to learn social mistakes that have occurred throughout history.

Perhaps the reason why progress is so slow is that individuals are all indpendently doing the best we can to live out our own life’s cycle. Maybe that indivudality is part of our problem. Or maybe it’s just how we humans intrinsically are and that’s the point Ecclesiastes.

Humans are naturally inclined to vanity- we tend to be excessively prideful in our own achievements and appearance, which can make the quality of our being seem worthless or futile. Though it’s an unhealthy outlook, humans seem naturally inclined to this approach. Maybe this is why vanity was used in the English translation- not as a slam to mankind- just an utterance of truth. We are inclined to vanity.

It’s interesting the things we accept, support, and celebrate. It’s also interesting to note the things which we do not celebrate. We don’t expect infants to know how to walk when they’re born even though millions have come before them.

Perhaps life wouldn’t seem so futile if we celebrated more milestones when those we love achieve them.

We celebrate milestones along the way of our babies, like a first bath or a first food because it is the baby’s first, not because they will continue these things for the rest of their lives.

For example, though I know all the stages of grief, I must live them out each time tragedy strikes, no matter how many times I lose someone dear.

Why don’t we celebrate not just when one votes, but when one actually reads the voter handbook and civilly discusses controversial policies with neighbors and family?

Or when a friend writes her first chapter.

When a neighbor takes the class.

When a colleague starts a business.

Wouldn’t it be great if we supported couples- not just at their wedding when they are in health, but also later when they are in sickness?

What would it look like if we all celebrated the miracle of our breath-ins and outs- like my Yoga practicing friends do?

To breathe in and out- what a miracle!

What would it look like if our society celebrated the food and sharing meals every day, instead of viewing our essential nourishment as a hassle to be tackled?

What would it look like if we had a community where everyone had a safe place to share their gifts and vulnerabilities so that we could indeed find peace on earth?

What would it take to live this way?

Perhaps the only way this is possible is to imagine the person you like the least- the person who causes the most problems, is the most irritating, and spend quality time with them until you can find something endearing about them.

Perhaps that person is you.

Perhaps that is the start of peace.

Perhaps it’s impossible, or perhaps it’s simple.

The answer, I suspect, is already here. After all, “What has been is what will be, and what has been done is what will be done, and there is nothing new under the sun.”

Concerns and possibilities.

At first I hear honking horns

It’s a parade of children waving

This cheering fills me.

Hopeful is how I feel.

I go inside

Then I think about the ones

Who rely on food at school.

They go and pick up their meals.

Now we need volunteers to help.

This place of enlightenment is also a food bank

It has been for some time.

They are  getting worried.

So am I .

Something doesn’t seem right.

What happens when the masses grow hungry,

And no one volunteers to feed them?

When we grow weary of this hibernation,

What happens then?

Thomas Jefferson once said, “if people let the government decide what foods they eat and what medicines they take, their bodies will soon be in as a sorry state as the souls who live under tyranny.”

*

This pandemic is no fluke.

It is a magnifying glass

On a wound that’s been around since before Jefferson. 

I write because I agree with his stance that, “the price of freedom is eternal vigilance”.

He was a founding father, ahead of his time in all ways political, economical, agricultural. 

I respect his work, despite the fact that he owned slaves and still dared to say, 

”Equal rights for all, special privileges for none.”

Can we leave room for the possibility that even a hypocrite can sometimes be right?

Maybe even the likes of Jefferson might have been unintentionally contributing to the problem that plagues us to this day. 

What a privilege it must be to have flaws and make policies that shape our country.

*

I recognize that even good leaders are deeply flawed. 

I see it easily in the ones I choose, and not as well in the ones I did not.

I still think that Jefferson had insights the average person didn’t, even though he was your average hypocrite.

*

I heard a gunshot yesterday 

While in quarantine.

It was 6am

Somewhere in my neighborhood

Close enough to rattle my window

And shake my soul.

Do I call?

“A random gunshot?”, they would sneer.

“From where?”

I would ask, “What good reason does one have to shoot

So early in the morning?

In a neighborhood like mine?

Something doesn’t seem right.”

But who would I call and what would I say? I dare not ask the question to strangers who are already taxed with their essentialness.

It’s a random threat

And only a possible death

“From which direction?” they would ask.

And since I do not know

I do not call.

Even though they might be bleeding out,

Alone and hopeless-

It is not my job to save the ones I cannot see.

But more than that, I do not know what to say

Or how to know

Nor whom to call without seeming foolish.

I don’t want to seem foolish.

So quietly I pray and write this.

Maybe this is foolish.

*

I use my money to stimulate by consumption.

The irony is not lost on me

The double meaning of consumption.

I fear this is what caused all our problems in the first place.

A trillion dollars

Trillion with a T

In the form of tiny drops into our buckets

To save our country without a system

No web to help those working

Essentially 

Hourly

Many with no pension or healthcare 

Dying

For $15 an hour

I remember Jefferson once said, 

“If the American people ever allow private banks to control the issuance of their currency, first by inflation and then by deflation, the banks and corporations that will grow up around them will deprive the people of all their property until their children wake up homeless on the continent their fathers conquered.”

*

Then I look and see

Others storming capitols with guns in hand,

And flags, 

Some representing a time long ago, not today

They demand liberation

In the face of medicine

And science

After all, Jefferson, the man I think has some reason and foresight- whose face is on a bill-once said:

“What country can preserve its liberties if its rulers are not warned from time to time that their people preserve the spirit of resistance? Let them take arms.”

They want to stimulate

They want to consume

They want liberation by returning to the America their grandparents knew

I fear it is already gone

What a privilege it must be to have flaws and still share an opinion.

*

The irony is not lost of me when they say, 

“What right do you have to police me?”

But they then police everyone else in their words and deeds.

We understand they have a right to be so patriotically demanding.

But then I think of all those peaceful protestors

Vying for legal policy change, kneeling, speaking, voting, marching-

Shot in their tracks for daring to question a broken system

That breaks them.

They looked different.

This seems to be the main concern. 

These people look different too. 

They’re all threatening the status quo,

In the ways that they’re allowed, that is. 

*

I cannot believe what I witness, even on the news.

What can I trust?

But then, when I want to turn it all off, I think of Jefferson when he said, 

“When the speech condemns a free press, you are hearing the words of a tyrant.”

Wait. 

Did he say that?

No, actually he said, 

“Our liberty cannot be guarded but by the freedom of the press, nor that be limited without danger of losing it.”

The first one seems like he said it though, doesn’t it?

*

Let’s promise to always critique a free press that is sponsored by someone selling something.

And remember we don’t have to buy it.

*

We don’t have to buy it.

*

I must find a way to trust 

Without consuming.

I understand.

*

Funny what demands we accept.

Closures without closure. 

No comprehensive plan at first, beyond a week or two.

Funny what is not questioned:

A broken system too expensive to adjust,

Authorities,

Lack of health care,

and $1200 a piece to “help”.

Funny what is questioned:

Convenience, security, economy over health.

Priorities, I suppose. 

*

Jefferson’s warning echoes in my ears,

“Yes, we did produce a near-perfect republic. But will they keep it? Or will they, in the enjoyment of plenty, lose the memory of freedom? Material abundance without character is the path of destruction.”

Today I pray we leave room for possibilities,

That near-perfect can still be better.

For memory, character, and discernment

in all.

Special Handshake

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*Disclaimer- I wrote this in 2019 but got the courage to make it public in 2021. Progress!*

I wish there was a special handshake for parents and allies of special needs kids. Something subtle, but noticeable that shows, “I understand what I am witnessing and I am cool with it, and you. I come as a friend.” It would need to be something that is appropriate in all cultures, so it could work on an international scale. Something inviting, like the Star Trek Vulcan salute, or a wink or something. It would really make our lives a lot easier.

This post is a chronicle of a social excursion for me, a parent of an autistic child. I write it to commiserate with other special needs parents, and perhaps help others understand (especially teachers and voters) why articles like an entire graduating class giving a silent ovation for a man with autism, matter. If you find yourself rolling your eyes at headlines like that, I definitely get it. I used to be of a similar mindset. I mean, inclusion is cool, but that isn’t how the world works, right? How in the world is not clapping for one kid a big deal? And why should we not clap? Everything is much better than it used to be. This kind of stuff is going too far. What’s next? Who cares?

Also, this is not written because I feel bad for my son or need to identify with being a “special needs parent” to feel special myself. I don’t. He’s perfect just as he is. I simply and firmly believe that there is no such thing as “other people’s kids”. We belong to each other.

I want to try to explain why you should care, but it’s a nuanced answer that is best explained with a recent, actual outing. Though we’ve come extraordinarily far, the bar set before things like the Americans with Disabilities Act was set extremely low. If you want to learn more about our country and the world’s relationship with special needs people, please read this incredible book. But today is just a brief insight into one family’s daily life, continue on.

Yesterday we went to the library to return some books when we unexpectedly arrived at the exact same start time of the reptile show. Reptiles are a favorite of my kids, but especially for my son who is on the autism spectrum. It’s been my experience that autism is generally misunderstood for a variety of reasons, but one main reason is that it presents so differently in each autistic person. For my kid, one volume and types of noises, textures, and lights often cause sensory overload for him. This is so not just for autistic people but for many others who have any kind of sensory sensitivity or processing disorder.

Since it was a Thursday afternoon, I felt like it was even better because the place surely wouldn’t be that crowded, making it simpler for my child to succeed in this setting with fewer sensory stimuli.

Except for today, the room was packed.

I took a deep breath. While I am thrilled that a public library was bursting at the seams midweek, I am still very weary of how my son will respond in crowded settings. I am not quite as on edge as last year, when he entered a general education kindergarten class. I worried extensively about elopement and social trauma, but it went about as well as it could. Life is starting to get a little easier.

It’s a tricky thing to be a parent of an autistic child. There’s a unique paradox that only the parents seem to know: on one hand we are so proud of our brave, resilient child, but also so fearful of the inevitable cruelty that will cross our child’s path. We all cope with this differently, but I find myself on daily alert for brutality towards my child. I also remind myself that everything, even cruelty, is a learning experience. I still get nervous when we attend social events, but am not deeply anxious anymore. This is not just because I understand that if I only look for cruelty, that is what I will find, but also because he practices a lot with trained professionals like speech therapists and occupational therapists outside of the normal school day.

Most kids sat on the floor of the retile show and parents sat in the back. The presenter was pretty funny, and made jokes throughout as he educated kids and parents.

Though nervous to let him be on the floor with his neurotypical sister but I decided, “I’ve got to learn to let him do this stuff, it’s the only way he will learn.”

The first half of the show he figuratively hit it out of the park- I couldn’t believe how well he did sitting on his bottom, listening and raising his hand. “Just like a regular kid”, I thought proudly.

Someone else arrived partway through the show. A beautiful little girl, maybe about 5 or 6, who walked right through the crowd and up front to the reptile presenter. She showed no concern for the others around her. The presenter frequently had to ask her, in front of everyone, to sit down, to stop touching his reptile containers or the reptiles themselves. She walked around touching other kids’ heads near the end of the show.

I don’t know this child, but I’ve seen this kind of behavior before. My son is built with a motor that prevents him from being able to stay seated very long. He has never finished a meal without getting up multiple times. Sometimes he gets lost in his thoughts and forgets what he is supposed to be doing. His compulsive need to touch interesting things make for some very awkward apologies when I explain to the middle-aged woman standing in line why my kid put his hand up her shirt. Because of my experience, I realized the way this little girl was behaving was not that of a naughty child, it was of a person who has special needs. Without raising a child like mine, I know I would have judged this mother to be negligent and this child to be willfully disobedient. In fact, even with my personal experience, I began to wonder why the mom didn’t just grab her kid and hold on to her after the fourth or fifth warning by the presenter. This was social suicide for her kid, and frankly, a bit disruptive.

The mom stayed in the back and watched this happen. I must give kudos to the presenter, because he had every right to ask the mother take her “disobedient” kid out. He didn’t do that, but I could understand how he probably wanted to. I wonder how many times this mother and child got dirty looks and judgmental statements hurled at them.

I couldn’t help but wonder if she knew she could get help to allow her daughter a better life experience. Maybe she did know and this is just what it looks like right now. Maybe she is in total denial? No, I saw how this little girl was dressed and groomed; this is a devoted, engaged mother who does understand society. But when I looked at the mom, she didn’t look disappointed in her daughter. She saw everything her child was doing, and didn’t spend her energy attempting to look disappointed to please the people she knew were looking at her, like I usually do. I was equally impressed by her, and ashamed of myself for moments earlier mentally congratulating my child for appearing “regular”.

I was also reminded of another thought I had only moments earlier about my child and wondered if she had the same thought about hers: “I’ve got to learn to let him do this stuff, it’s the only way he will learn.” Maybe that’s where this mother was, too. If so, she had way more grit than I have. I would have pulled the plug on the social outing way sooner.

We have come a long way from the old days of locking up children with special needs, or attempting to beat their “bad” behavior out of them. It was not that long ago where society as a whole believed children could be born defective, and though we usually didn’t murder them, we found it socially acceptable to lock them up in facilities that would halt anyone else’s “progress” by being slowed down by another. If you do not believe me about our history with people with special needs, please read In a Different Key. We still have a long ways to go before we can say we are a totally inclusive society, and even though it doesn’t always feel like it, our culture has made tremendous strides in a positive direction.

This child’s behavior was really hard to watch; it’s tempting to remove her from the situation. But each time we remove someone with special needs from the group, we prevent social progress because we prevent inclusion. At the reptile show, her awkward interjections made us go a bit more slowly, but there was a lot of learning happening. No, not just for this one child, but for the entire group, though I am not sure if the entire group knew. We were learning not just about reptiles, but also about patience, compassion, and empathy. As a teacher, I now think about how often we stop learn “in the moment” learning because it’s awkward and feels super slow and off-task. But I realize now how important slowing down is. It is no waste- it’s a valuable investment.

Deep down, and I am ashamed to admit this, I was a little relieved that it wasn’t my kid this time. This behavior is what my six year old’s social outings used to frequently look like, though he still does socially unacceptable things. However, for the first time in a long time, I got to be the objective onlooker and I noticed this child didn’t hurt anyone. She responded to the presenter each time. It was awkward and slowed us down, but we all still enjoyed the show, and she got to be a part of the group. There were lots of awkward, cringe-worthy moments, but it all worked out.

One interesting fact: to date, nobody has died of an awkward situation.

Sometimes I wish I could just go places with a big, light up billboard right over my head that said, “My son is autistic, that’s why”. I would turn it on whenever that cringe-worthy thing happened. Like when he raised his hand to go up and hold the python with a group of kids. I noticed he put his hands in his pockets, which was probably because he really wanted to hold up his shirt and bite it (but I told him earlier during the show he cannot do that and have told him this what feels like millions of times). I was proud of him for finding something else to do with his hands, but then the presenter told him to get his hands out to hold the snake, he wouldn’t do it. We made eye contact, and I gestured for him to put out his hands. Reluctantly, he took out his hands. He held up the end of the snake with glee, but I know he was mitigating the desire to squeal, flap his hands, and probably bite something because he was so elated. Though it took him a bit longer, he responded to the request. His progress makes me proud and breaks my heart. He has to do this every single day. And also, why can’t he just flap his hands? Who cares?!

My little boy loves to make jokes and he knew that this presenter was very funny. When his time was over, the presenter told the kids to sit down. He wanted to be silly with the reptile expert, but struggles to know when and where this is appropriate. After a few failed attempts to make the presenter giggle, he finally took his seat. At least he wasn’t doing what the little girl was doing, which was getting up again and attempting to touch his basket containing a lizard. I believe the distraction helped people not judge my kid so harshly for doing “weird” things.

After the show, we went to the children’s reading area where I ran into a respected administrator in my school district. He was there with his four perfectly behaved children. I introduced him to my kids, my neurotypical daughter said “hello”. My neurodiverse kid reached out to shake his hand, then told him he doesn’t shake hands, then offered “knuckles”, then shook his hand anyway, then told him to do knuckles, then he closed his hand over the administrator’s hand, then wandered to the back of the reading room.

*cringe*

I wish I had that light up billboard right then. But awhile ago I decided to no longer explain to people that my child was on the autism spectrum whenever something like this happened because: 1. I don’t think many people actually know what that explanation means and 2. I know that he notices EVERYTHING, even things cannot be seen. When I act disappointed in the way he is, I am sending him a powerful message that who he is isn’t right or good. I know I get a lot wrong, but I’ll be damned if my kid gets this message from his mother. That’s what advertisements and social media are for. Also, my kid loves to make jokes. This greeting, in hindsight, was actually pretty funny. Why can’t I just celebrate that in the moment?

We finally went to the back of the children room where the mother with her little girl were reading. The mom was struggling to get her to hold onto a book and look at it, something my son still struggles with, too. I noticed the mom spoke to her in Spanish, and the little girl answered in English. I was impressed by their bilingual exchange. I wanted to go say hello to the mother, but I didn’t know how to do it and wondered if she was fluent in English. I knew some Spanish, but if I was going to connect, I feared my Spanish skills wouldn’t get the job done (this is why we need a special handshake!!!).

I wanted her to know I understood the behaviors I was witnessing and that I thought her little girl was great. I tried to make eye contact to at least offer a smile, but it seemed the mother either didn’t notice me, or didn’t want to even go there, which I totally understand. This mom would have no way of knowing if I was friend or foe. I’ve been chastised by a perfect stranger for “neglecting” my child who was behaving in a socially inappropriate way. I’ll never forget it and would never want someone to experience that either. I suspect this mother has had this happen to her more than a few times.

Social outings are extremely exhausting for me even now with how much progress we have made. I know they are exhausting for my son too, and usually he goes to his room and lays down with his animals when he is done.

Children with special needs like my kid try so hard every single day, and succeed often. And they fail sometimes, too. Because they are children and learning. Because they have special needs. Because they are human beings. We push children with disabilities way harder than typical children. If I were my son I would hate to always have to make behavioral adjustments and mask who I am because society as a whole will fundamentally misunderstand me.

But how do I change this reality? This is the paradox of raising a neurodiverse child: you know they are brilliant and awesome exactly as they are, but they do need to respond in a socially appropriate way to the world around them if they ever want to thrive and have a chance at independence. There needs to be a way to explain briefly to people things like sensory overloads so people quit judging the wrong darn thing. Behaviors that are demonstrating a sensory overload need support not moral judgement. The worst part is that the ignorant onlooker seems to be the ultimate factor in determining if a child like mine is worthy of inclusion. This judgement is why autistic people are more likely to be apprehended by law enforcement, even when not breaking the law. People often do not know what autism actually looks like in regular life and the amount of trauma it inflicts on innocent people is one of the most despicable things I can think of. This fact is why you see autism awareness stuff EVERYWHERE; parents like me are scared. And we’re tired. And we are dependent on you to help our kids (and our autistic kids who become autistic adults, too!). And often, we parents aren’t even the autistic people! Can you imagine how they must feel?

I wish people could also consider what happens before the odd behavior, or at the very least what the function of the behavior is before they determine a person to be “bad”, or “weird”, or “naughty”. Right now, this is not considered to be relevant in the general population. Until that kind of thoughtfulness is pervasive in our society, kids like mine will live on the fringes. Until that day of sincere daily inclusion comes, I will keep writing to try to make the world a better place through education.

On a more basic level, I wish we had a special handshake or signal for the day to day activities to help families move through the world of parenting a child with special needs. Something that says, “I get it!”. It would help so much.

Any ideas?

“Tiger Livy” is Available Now!

Thank you for all your support! The e book, paperback and hardcopy are now available on Amazon or your local bookstore can order for you. If you’re in Central California, consider supporting Petunia’s Place or Vivily Vintage Handmade, as they carry the book there.

This book was inspired by my niece, Livy, who was diagnosed with a rare disease known as juvenile dermatomyositis or JM. But this work was also designed to help all children and their families struggling with chronic illness. To make this book, I worked with Livy’s family, doctors,  and some perfect strangers in order to provide a small bit of hope. Here is a media segment explaining more or go to tigerlivyproject.com to see more.

To our team’s knowledge, this is the first children’s book that attempts to discuss the mental, physical, and emotional challenges that come with any serious disease. The magic of this book is that it also touches on how one heals. Livy’s grit, imagination, medicine, nutrition, and love restore her health and transform her into a leader.

Thank you for all your support. It means the world to us!