Testing and autism

The testing that many autistic children receive to obtain an Individualized Educational Program (IEPs) can be a helpful barometer to determine areas of support needs. Sometimes, these tests are flawed.

Autistic children often get tested to determine areas of support. Though these tests can be flawed, they are important. Services are significantly more affordable if assessed by official state authorities. Caregivers who are scared or overwhelmed by this process, this post is really about empowering you with information I wished I knew when my baby was being assessed.

While we can debate about if this testing system is right or fair or even good, at this moment in time, that’s not what I came here to discuss.

Obviously the system is flawed. There are a million parts to the system that with a slight tweak, could transform the educational experience for children and their families.

I am talking about things like making sure a child is regulated before testing them. I am talking about educating parents and providing therapy for them, too. I am talking about providing support for teachers so that they are seriously able to accommodate an autistic child in the least restrictive environment, genuinely and consistently, with no shame or wasted energy if and when they ask for help.

This part of the post is here because sometimes conversations can turn into a philosophical debate. Even people who fundamentally agree can vehemently debate each other and lose sight of the entire point. I’ve seen it a million times and I bet you have too. Mothers arguing over who is “right” for unique situations that have nothing to do with each other. Professionals who claim to know the best course of action.

On one autism support group, I anonymously shared about a social situation that happened with my husband and autistic child, asking for strategies to help my husband better support our child. Several group members instructed me to divorce over the incident. Their solution, in my time of despair, was to blow up my family unit. While sometimes starting over is the right thing, in this case I asked for ways to make my current situation better with the resources I currently have available.

It is easy to have the entire point missed in these online groups because keyboard warriors make sweeping declarations, oblivious that they are devoid of particular realities or factors that cannot be transmitted electronically.

I hope this blog never becomes something like that. The purpose of this blog is to imagine and then implement ways to support autistic people.

Most change happens when we all have a common understanding.

Most change happens when people understand nuance.

Most change happens when people patiently work towards a clear goal, not get distracted by complainers who lament all the things that “should” be happening.

When we focus clearly on where we currently are and where we need to be, nothing in the world will stop us, not even a deeply flawed, powerful system.

While there is no doubt overhauls in so many areas are needed, I am a lover of history and sports. It’s my understanding that the most influential change-agents cleverly, enthusiastically, and passionately find ways to win in the game that they’re playing. The school system is not that different.

If your child is being assessed in a current school system, it is tempting to feel like a victim or out of control.

There may be a lot you don’t know about the system, or autism, or I’ll be honest (and this is from personal experience): you may have parts of yourself hidden deep down that are beginning to surface. You may be grieving, mourning, angry, scared, isolated. If this is the case, you need to honestly look at why that is happening.

You will not die from this process. It might feel like it. I had my first panic attacks from this process. I promise, you will not die, but you will need to ask for help if this happens to you.

Breathe deeply. Take care of yourself. And determine what will “winning” look like for your family.

You’ll be stretched because for most of us, we haven’t had to dig more deeply than “getting a good education and having a good life.”

For most autistic people, their education in public school was not good. You probably already have a sense this, and this is why there is fear, anger, sadness, and resentment. Maybe you just never looked closely because it was not personal for you. I know those feelings are big, but if you have them, use them as fuel; do not let them consume you.

The teachers, administrators, other people aren’t the problem. Do not make them your enemy. More on that later.

You want to “win” this game and we need to define what that is. In this case, it means helping your autistic child thrive in a system that was not designed for them. To win, you must become an effective advocate. Don’t worry; you can begin in a free way, right now, with one step.

No matter if you are just getting started in the assessment process, or knee-deep in the system, you become an effective advocate by asking good, honest, thoughtful questions.

Ask them of yourself. Ask them of your support team. Ask them of your child.

You might not feel confident in how to advocate in a collegial way, I know I still struggle. But asking the right questions is life changing.

Here’s a real example of high level questions in action:

“Why can’t my child sit still in his class? Oh, he has significant proprioceptive and vestibular needs due to his autism? How do I support that? Who can help him with those needs at school? Can we make sure he is not getting in trouble for needing to move the way he does because of his unique neurotype? Who is educating the teacher about his needs? How can she get resources more easily? How can I help you help him have a great school experience?”

When I asked questions like that, without shame or blame, I pointed myself and the team to solutions. I learned, and so did the team supporting him. It required them to articulate what they were doing and more importantly, it helped them become aware of what they weren’t doing, without shame or blame.

Nothing about a disabled child in public school is simple or easy. What does “good” look like for your autistic child, not a neurotypical one. When you can define what a successful learning experience for you and your child, everything transforms not just for your kid, but honestly for the entire classroom. This is how we can make significant changes to the powerful, flawed system, right now.

You will get more adept at advocacy, trust me. More importantly, trust yourself. It will sometimes hurt because you’ll make mistakes. Some people you should trust will break your heart. Others will restore your faith in humanity.

Remember to be flexible but focused; adjustments are needed to support a growing child thrive in a system that was not designed with their needs in mind.

Testing Flaws

An IEP (individualized educational program) is a serious undertaking of time and resources and is usually only performed because there is a concern about developmental delays or noticeable learning deficits. Very rarely are these ever done because there isn’t a “problem”, when it comes to performing in a typical American public school.

The intent of this post is not to argue about the validity of the American educational system, but to discuss the system as it currently exists, in an effort to support autistic children right now, not later.

Though I love philosophy and discussing the future of public education, that wont help kids like my 8-year old, and thousands of others get a robust education. But one of the test results said my third grader’s vocabulary level was that of a kindergartener. This is a child who speaks about animals foraging, migratory patterns, unique camouflage of animals, knows the continents of the world, and a variety of other things. Though he may have language issues, his vocabulary level is not one of them.

But I’ll give you an example of what might have happened when he was being tested for vocabulary levels.

Once when we were reading a book, he was struggling to read a word he just read on the previous page. As a hint, I told my child to “go back to the last page to see the word you just read.”

With a quizzical look, he flipped to the last page of the book, not the last page he read.

Because many autistic people often interpret language in a more literal way than non-autistic people, he couldn’t figure out my hint, even though he technically did what I said.

it is also common for autistic people to struggle with auditory processing, as is the case for my child. Sometimes he mishears words, or it takes him longer than average to respond to verbal communication.

This is one reason why autism is considered a disability.

So what does a parent do when they’re told their child is deficient in a category where they know their child is not deficient?

Should I speak up and challenge it?

Does it matter? He is “low” for his age in a variety of undeniable areas. Will I be perceived as difficult? I want these people to want to work with me. I don’t want to be “that” parent who argues and nitpicks.

But I also want to see my child for who he is. It’s not my job to ask them if he was dysregulated when he was tested. Or is it my job? Was there a ton of sensory input before he was assessed? How was this test given in the first place? Was there reading involved?

Because if any of these are true, you’re not going to get a good snapshot of his ability.

It’s difficult for even an educated, motivated person like myself to address these questions politely.

I am not confident in how to advocate in a collegial way because the truth is, I don’t know these people well. And it hasn’t been modeled much for me. As a teacher, I have worked with parents who are downright awful.

In retrospect, I can now see their horrible behavior for what it is: rooted in fear. They’re afraid what their child’s disability means for their future. And as a young ignorant teacher, I didn’t know how to meet them where they were.

If I am totally honest, I probably exacerbated their fear because I was defensive and exhausted. It’s hard to be a teacher, let alone focus very closely on one student. I know- I am one. I am motivated, and extremely knowledgeable about IEP services and it’s still one of the most challenging aspects of my job as a general education teacher. I shudder when I think of ableist educators who commonly populate the general classrooms in our nation.

Conclusion

Nothing about an IEP is simple or easy. It is a complex, flexible plan that will be adjusted many times in order to help a growing child thrive in a system that was not designed with their needs in mind.

This plan will change a child’s life, and teachers would do well to treat it like a sacred document.

And parents? You’re part of a team. Trust your team.

Professionals? You’re part of a team. Trust your team.

Believe the best. Ask for help. You must. It will take a village to help these innocent ones thrive.

Testing and services for disabled people are powerful. Act like it.

What are the best ways to support my autistic child?

Here are some common questions people have about autism and answers I wished I had when my child was initially diagnosed in 2016.             

  1. What are the best ways to learn about autism? Learn about autism from the experts: autistic people. Follow #actuallyautistic people or check out NeurodivergentRebel.com. I wished I had done this first.

When you learn about autism from people who are actually autistic, rather than those who are “experts” who’ve only 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), you will be amazed at the beauty and power of neurodiversity. 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.

  1. How do I learn about autism? Remind yourself that you’re trying to learn about a neurology that has been brutally pathologized for a long time. Your core beliefs will be challenged and it’s normal to be uncomfortable. 

Many of my fears about autism were unfounded because I took a clinical approach to my understanding. 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.

Autism is not a terminal disease. But it’s often treated like that because of how “experts” like to talk about it. “Tell-tale signs” or “symptoms” are not called traits.

  1. Parenting and autism. Autism isn’t a moral failing on the parents’ part, nor a choice by your child. If you find yourself feeling like a failure or wanting to blame your kid for “misbehavior”, see #2.
  1. What are the best ways to help my child who is autistic? Autism presents differently in each person and is dependent on their support system and unique needs. A parent who helps their autistic child helps them build on their strengths and honors their unique needs. If you only focus on deficits, that is all you will see and that doesn’t actually help anyone. 
  1. How do you know if a therapy is right for your autistic child? If you’re not sure if a therapy/treatment/doctor is right for your autistic child, just replace “autism” in their advertisement with any other inherited trait and see how it sounds. “Curing Brown Eyes with Natural Supplements” sounds pretty stupid, huh? How about “Fighting Irish Heritage with [insert name of ‘expert’ doctor here]”? You can’t cure your inherited traits and you don’t need to. 

Hope this helps. Follow @sensationalstims for more info!

Helping Autistic and Neurodivergent People

This is a glossary that is available in my latest work The Case of Sensational Stims.

Included are many terms and concepts I wished I had known when our child was diagnosed as autistic.

If these can help one family better support their neurodivergent loved one, then this effort was not in vain. You can download, print and even make text bigger by clicking the + button on the documents below.

These pages and more are available at the end of my latest book The Case of Sensational Stims. Order it today on amazon! See more at sensationalstims.com

PS- Thank you to Ashlyn Garrett for designing this. Check out her portfolio!

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.”

“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!