therapy – eringarciabooks

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

Featured by eringarciabooks, posted in autism, health, psychology, special needs

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 intent 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. Keep reading and learning!

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 after his official diagnosis.

Start with learning the definition and do not attach judgement to it. Observie and learn, rather than rely on presumptions. When I did that, I ceased to worry about all I didn’t know.

Even if you know nothing right now, just learn one thing today. Then grow from there.

Knowledge is power.

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. Confusing, I know.

Want to know what to do? Just 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 in taking care of yourself. A healthy ally is an effective ally!

C. Your child is amazing. 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 everyone’s unique 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.

G. Don’t advertise a diagnosis without consent. But if the autistic person is a child and lives with or frequently visits another person/family, it should be shared.

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.

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 translates to mean, ugly messaging.

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. It’s all I’ll ever need in the world.

8. “Curing” autism is wrong. 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. 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].”

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. How to discover if a training/therapy is appropriate or not: replace “autism” with another group’s name and see how it sounds. 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 and trauamatizing really intelligent people can be.

10. You may have feelings of guilt the more you learn about autistic people and their needs. Some may feel guilty with regards to their previous attitudes. 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.

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 haven’t but have self-identified. Sometimes that’s all a person can do.

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 situation in a socially acceptable way, but that still keeps the dignity of the neurodiverse person in tact.

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 some 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 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!

Special Handshake

Featured by eringarciabooks, posted in special needs

*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?