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.

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