To The Parent Whose Child Just Received an Autism Diagnosis

Image is a blue background with white letters which read:
"Dear Parent, It'll be okay. I promise. Here are some tips.
Love, The Gonzo Mama." Pink lips in the shape of a "kiss"
appear in the lower right corner.

Hello, readers. I've recently been giving this topic a lot of thought, as I've been going through the diagnosis process with Bravo, and thinking about how different it feels, this time around.

When Curlytop was diagnosed, it wasn't news to us, because we knew who she was, and she had been with us for over eight years. We'd been asking and asking for someone to please, see what we are seeing, and give this kid a diagnosis, so we could arm her with the empowering language and identity she would need, as she grows to adulthood. Self-identification ("I'm autistic") is such an important part of self-advocacy ("so I may need accommodation"), and we wanted to ensure she was equipped with that personal toolbox.

And now, we have Bravo. Going through the diagnosis process was different, but just as important. Autism "looks different" in girls, you know? So, it's often easier to spot in boys, and the assessments and observations go more smoothly, and it's really just "yes, it's autism," or "no, it's not." In any event, we already knew Bravo was autistic, so the diagnosis was just a formality, just like in Curlytop's case.

Even though I knew I was autistic, I wasn't diagnosed in childhood, so I had no idea what an "autistic childhood" should or would look like, when Curlytop was diagnosed. I just kind of muddled through childhood and adolescence as the weird girl who didn't understand relationships and friendships, who was always writing or had her nose in a book so she didn't have to talk to people, and had a really overwhelming obsession with numbers and counting things like the number of steps from English class to History class, the number of seconds it took to evacuate the building during fire drills, and the number of tiles in the Science room.

I didn't have an autistic childhood. I had a really difficult, painful, tumultuous adolescence, and when I learned in adulthood that it was autism, it all made sense. It was freeing, liberating, and soothing. Everything I knew about myself fell into place.

How much easier would it have been, had I been able to -- and encouraged to -- identify as autistic in my youth? A large part of me wants to believe I would have mastered self-advocacy much earlier, and I would have felt safer, more comfortable, and less like an outcast. Of course, I'll never know, but I want every autistic kid to have the opportunity to learn self-love, self-identity, and self-advocacy.

Our job, as parents, is to provide those opportunities.

When Curlytop was diagnosed, because I didn't have a model for autistic childhood, I was easily influenced by marketing, false-advocacy, and pressure from healthcare professionals. It took me a full year to gain stable footing as an independent parent and advocate for my child (and myself!), and that footing actually didn't come from parenting communities or "Autism Awareness" campaigns or healthcare providers.

It came from my growing network and community of autistic adults.

What sort of future do I hope for, for my daughter, and the children in my care? I hope for one in which they are fierce, are proud of who they are, are in possession of strong and healthy boundaries, and ask for and receive help when they need it. So, it only makes sense to start setting that future up for them by learning from people who are already living it.

If I could go back to that day of Curlytop's diagnosis, armed with the knowledge I have now, this is what I wish someone had said to me, and what I'm glad I know, this time around (some of these things I already knew, but it would have been great to receive affirmation):

1. Your child's diagnosis does not change who they are, or who you are. 

You've known your child since birth (or -- for families created through adoption, kinship care, guardianship, or foster care -- since placement). You know who your child is. You've been together for a while, and your relationship is not changed by a medical proclamation. Your child is still your child, and your job is still to make your child feel safe, secured, loved, and protected in the world, while helping them to develop into the most beautifully awesome version of themselves they were meant to be.

2. You don't have to change anything, right this minute. 

Really. It's true. Your child was autistic yesterday, and they will be autistic tomorrow, and for the rest of their lives. Taking a little time to research, ask questions, and listen to your child and your heart will not doom them to failure.

3. You DO need to decide one thing, right NOW.

Right now, before you do anything else, you need to decide what kind of parent you are going to be as your child grows to adulthood, and beyond.

Are you going to be the kind of parent who shares things like, "You might be an autism parent if..." memes, without considering if they are offensive or harmful to your child and the autistic community?

Are you going to be the kind of parent who compulsively "likes" and follows every single Facebook page or social media community that has "autism" in the name, without first learning what the page's or organization's views and positions are, and whether those positions are in opposition to the autistic community?

Are you going to be the kind of parent who shares "inspiring" videos about how a football team helped an autistic kid make his first touchdown, without first asking yourself if the video exploits the autistic individual, for the sole purpose of spotlighting the non-disabled people, just to make them feel good/seem hero-like?

Are you going to be the kind of parent who consents to and agrees to everything your child's healthcare provider suggests, without weighing the risks and benefits for your individual child?

Are you going to be the kind of parent who is supports and embraces the notion that autism "stole" your child?

OR...

Are you going to be the kind of parent who establishes healthy boundaries for your social media and real-life conversational sharing?

(Hint: Talking about your child's poop, "stimming," or other behaviors in any way that could be embarrassing or uncomfortable for your child is robbing them of their dignity, and, likely, their ability to feel they can trust you. I'm the first to admit I have been reckless in this regard, in the past, but I've found clarity and sense over time. This post is insightful, though it uses PFL (see point number 4, below), and has some excellent points for consideration.)

Are you going to be the kind of parent who thoughtfully considers the values of a community, social media group, or fan page, and the impact of those values on autistics, before joining or following?

Are you going to be the kind of parent who researches thoroughly every single so-called "advocacy" organization before supporting it, amplifying its messages, or using its symbols and slogans to show your advocacy for your child?

(For example, I always tell parents to stay far, far away from "the puzzle piece," "Autism Awareness," and other high-dollar advertising which have become synonymous with autism in general, but do very little to actually advocate for autistics, and, in fact, may harm autistics through words or policy.) 

Are you going to be the parent who doesn't rush to enroll their child in recommended therapies without researching the methods used, and the possible future implications, first? (See my post on Applied Behavioral Analysis (ABA) therapy, here.)

Are you going to be the parent who embraces everything that your child is, and helps them to become confident in their identity?

4. Learn how to talk about autism, and work through your own misconceptions. Get comfortable with the language, and get uncomfortable when people use language that doesn't respect your child.

This link has some really, really good information about five common language mistakes people make when talking about autistic children. It requires a download of a PDF, but I strongly suggest you not only download it, but also print it out for future use. Make copies to give to educators and service providers. The document is crafted by autistic voices, and when we talk about autism, those voices are the strongest -- and only -- authority on the subject.

Much debate has been seen among my blog comments and social media comments about person-first language (PFL) versus identity-first language (IFL) when talking to and about autistics.

Back when I was getting familiar with and comfortable with not only Curlytop's, but also my own, autism, I fell victim to the "PFL is always respectful, polite, and correct" dogma. However, after talking to actual autistics, I learned why a great majority of (but not all) autistics prefer IFL.

5. Decide, right now -- RIGHT THIS VERY MINUTE -- whether you are going to be an "autism parent," OR "the parent of an autistic child."

It may seem like I'm trying to exaggerate what could be interpreted as a small issue of semantics, but the difference is huge.

If you identify as an "autism parent," the emphasis -- the priority -- is on you, and your identity.

When you're "the parent of autistic child," the emphasis -- and thus, the priority -- is on your child, and your child's identity.

It's staggering how such a small difference in wording can create such a huge difference in advocacy positions, attitudes, and effectiveness.

6. Your child needs to see you advocate for them.

Your child needs to see you fighting for them... so they learn they are worth fighting for. 

Your child needs to see you educating others about autism, autistic rights, acceptance, and inclusion... so they can learn to teach others the same.

Your child needs to see you changing the world for them... so they can change it for others.

PARENTS WHO HAVE AUTISTIC CHILDREN: What do YOU wish you had known, or done, when your child was diagnosed?

PARENTS WHOSE CHILD WAS RECENTLY DIAGNOSED: What questions, as the parent of a newly-diagnosed child, do you have?


"Like" The Gonzo Mama on Facebook, and don't forget to see what's cooking with Sexy Vegan Mama today!

The First Day of School... Kind Of

We all got up this morning, with big plans.

Mine was to get the kids off to school, send Pumpkin off with Mr. Wright to take pictures of some house a million miles away, enjoy an adult beverage or six, and take a bubble bath. Maybe crawl back into bed. Whatever it ended up being, it was going to be gloriously kid-free. (See photo.)

Yessssssssss...

So, I got the girls on the bus, and off to middle school:

And got the boys ready:

But I decided to take the boys to school, myself, rather than putting them on the bus, because Bravo had not yet been assigned to a teacher. 

Here we are, on the first day of school, and the kid DOESN'T HAVE A TEACHER, YET.

Let me back up a little...

Our district has a pre-K program available for kids who qualify for it. Basically, if their assessments show they're deficient by a certain percentage in one area, or a cumulative percentage over all areas, they're "in." Well, Bravo came to us with an IEP, so he was "in." He finished out the year with the pre-K program, and at the end of school, his teachers told him how much they would miss him, and how excited they were that he was now going to be a BIG KINDERGARTNER! Woot!

They may have also said something like I needed to fill out a packet for Kindergarten, if he was going to be in district when school started, but, you know, we're doing kinship care, and the plan is for him to go home, so back in June, I had no idea if he was going to be around when fall came, so I sort of filed the information in my "Think About It Later" file.

And there it stayed. Right up until Monday, when I was reminded that he still wasn't registered for school. Aw, firetruck...

So, on Monday, I packed the baby into the stroller, walked a couple blocks to the district office, and filled out the paperwork for him to be a BIG KINDERGARTNER, and turned it in (not without some struggle, because I don't have access to a lot of necessary documents, like his birth certificate, and so on). But, I got it done. 

Then, I was reminded that if I wanted him to attend the same school as his brother, I would need to "choice" him, and that was a completely different set of forms.

Let me back up a little further...

A few years ago, the boundary lines for our schools changed. Our house is in this weird little pocket that got changed from the school Curlytop and Snugglebug had been attending, to this other school. At that time, we sat down with the team, and determined it would be best for the girls to stay in the school they were already in, since their supports were already set up, we had a great working relationship with the team, and it was a familiar environment for them. So, we just had to "choice" them to the school they were already attending. And it was no big deal. 

So, when we got the boys, we "choiced" Alpha into the school Snugglebug was, and had been attending for years, because... one bus, convenience, and all that. (Curlytop had moved on to middle school by that time. Interestingly, she moved on to a middle school out of our boundary, because of the elementary school she had been "choiced" into. Snugglebug joined her, there, this year.)

Anyway, I filled out the choice forms, and was told we should have an approval by Tuesday, unless for some weird reason the superintendent decided to deny it. Good thing, since school starts on Wednesday, right?

Yesterday, I got the call that it had been approved, which was awesome. I asked who his teacher would be, and the district rep didn't know, but said the school should have that information for me. 

I was tied up yesterday for quite a while, and didn't get a chance to call the school until after everyone had already left the office, so I was a little anxious, knowing school would be starting today, and poor Bravo still didn't know who his teacher was.

So, this morning, I just drove the boys to school, and trotted into the office with Bravo. "Who's his teacher?" I asked.

"We don't have him assigned to a teacher, but we should have that information for you by tomorrow."

BY TOMORROW? I mean, this kid was sitting there, in the office, with his backpack on, and his shoes that weren't scuffed, yet, and his sweet little clean face, and all the other kids were heading off to their classrooms, and we would know tomorrow who his teacher was?

"So, what do I do? Do I just... take him home for today?"

I got a blank stare from the secretary. After a moment, she recovered, and said, "Kindergarten starts next week. You know that, right?"

Ohhhhhhh...

Anyway, here's what my plans have been changed to, today:

I think he's a little disappointed. I am, too.

I swear, Southern Comfort, we will see each other again, soon.

"Like" The Gonzo Mama on Facebook, and don't forget to see what's cooking with Sexy Vegan Mama today!

Get Out of My Face with Your "Quiet Hands"

In case you're out of the loop, we have two amazing kiddos staying with us through kinship care right now. That's right -- two bonus boys: Alpha, 8, and Bravo, 5 (almost 6).

Anyway, I had to take Bravo into the school today to meet with the school psychologist for some cognitive testing, as his IEP review is due before his birthday next month. I haven't worked with this psychologist before, and he seems like a nice enough guy, but I'm pretty sure he hates me now, because... you know... I can never seem to hold my firetrucking tongue when it comes to the treatment and education of the kiddos in my care.

So, I'm filling out the ABAS-3 (Adaptive Behavior Assessment System, Third Edition) while Mr. Psychologist gets out some puzzle pieces to begin testing. He's working in tandem with the SLP (Speech & Language Pathologist), and they're tag-teaming... Mr. Psychologist performs one part of his test, and then Ms. SLP performs one part of hers, and so on.

Everything is going fine -- I'm working on one side of the table on the ABAS, Mr. Psychologist, Bravo, and Ms. SLP are working on the other side. Mr. Psychologist has killed the fan in the room because the noise is distracting to me, and it's all good, until I hear it: Bravo, "quiet hands," please.

They were in the middle of testing, and Mr. Psychologist had asked me not to intervene with the testing process, so I lifted my head, gave the psych a look (he was too engrossed in the testing to notice), and went back to the ABAS.

When he finished the test portion, I butted in before Ms. SLP could begin her portion.

"Is this a stopping point?" I asked.

"Sort of," he said.

"May I speak, frankly?" I asked.

"Errrr... of course..." he ventured.

"Okay. So, we're a house full of neurodiversity and neurodivergence. We don't subscribe to ABA (Applied Behavior Analysis) therapy, its tactics, its goals, or its dictionary. We don't use phrases like, 'quiet hands.' We believe physical stimming is healthy and productive, and we don't force children to refrain from it, hide it, or minimize it."

There was a brief moment of uncomfortable silence, and Mr. Psychologist cleared his throat. "I understand that. That's great. I actually didn't even know that 'quiet hands' was an ABA thing."

Like, this guy wanted me to believe that he pursued an education in psychology -- presumably, with an emphasis on child development, at some point? -- to the point of receiving a degree, but had NEVER HEARD THE PHRASE "QUIET HANDS," IN THE CONTEXT OF ABA? I gave him the benefit of the doubt, in any event.

"Gentle redirection to return focus to the task at hand is fine," I said, "but I don't endorse attempts to restrict physical stims."

I let it go at that, but I wanted to scream, "BUT IT SERVES THE SAME PURPOSE, DOESN'T IT?! Does it even MATTER where you heard it, when what you want the child to do is stop his physical stimming?!""

Let me explain.

Applied Behavior Analysis (ABA) is compliance-based "therapy" popular with parents of autistic children, which includes goals such as "reducing inappropriate behavior," "increasing socially acceptable behaviors," and "increasing appropriate and effective communication." Its primary goal? To "fix" autistic children, "correcting" their behaviors, so they appear more neurotypical ("less autistic"), drawing less attention to themselves and their caregivers, so those caregivers and society at large can feel more comfortable around them.

If you're not grasping why ABA is harmful to autistics, try reading "Quiet Hands," by Julia Bascom.

Is that too artsy for you? Try this one from Amy Sequenzia, of the Autistic Women's Network.

Want to see what this compliance-based indoctrination looks like as it carries into adulthood? Read this post from Neurodivergent K.

Anyway, so I was trying to explain to Mr. Wright that the new school psychologist hates me, now, and I started telling him the story, and when I got to the part about hearing "quiet hands," he fell out of his chair, laughing.

Not because he thinks ABA is funny, but because he's been in IEP meetings with me, before.

He said, "Ohhhhhhhhhh, hell... QUIET HANDS? Did you lose your ever loving shit? Were you standing on your toes? Were you doing that? I can just see you, standing on your toes! You do that, you know!"

Well, no. I was sitting down, actually. Mostly, anyway. I may have been slightly out of my seat. Reaching across the table. With my hands ready to snap the guy's neck.

But mostly, I was sitting. Technically. Pretty much, anyway.

Mr. Wright asked what I hoped to gain from the exchange, and suggested that I simply wanted the guy to acknowledge that I am right about this issue. I thought about it, and replied, "No. I want people to earnestly consider the weight and implications of the ideals they hold dear, and I want them to come to the conclusion on their own that what they've learned or been taught may be wrong. I want them to realize they've got it all wrong, when it comes to the autistic community."

"In other words," he said, chuckling, "you want to be right?"

Well, yes. And, also, no.

See, I didn't come to enlightenment by nature. Nooooooo... I actually thought the "professionals" who were overseeing medical care for my children had all the knowledge, and I didn't really question their advice, until I hit a roadblock. ABA was one of many therapies suggested for Curlytop when she was diagnosed, and it wasn't available in our area for her. At first, I was devastated. Like, I didn't have the benefit of any type of interventions when I was growing up, so I wanted to make sure she had EVERYTHING that could possibly help her to succeed, so I went on a wild crusade to find an ABA provider, and did a ton of research to help find one.

It was that research that led to my enlightenment. I talked to actual autistics who had been subjected to ABA therapies as children, and learned that some of them had PTSD as a result of their experiences.

I thought about my own experiences, and my own struggles, and how difficult extended eye contact was -- and is -- for me, and how I always got poor grades in speech class because I couldn't look at my audience, and how I deal with that now (by simply saying to people, "Eye contact is really difficult for me. Please don't think I'm not listening to you if I'm not looking at you. I can actually listen better by NOT looking at you."), and how I'm actually existing pretty successfully in the world. I realized that if Curlytop doesn't get forced to initiate eye contact she doesn't feel comfortable with, it's going to be okay. She will be okay. She'll be better than okay... she'll feel safe, and comfortable, and accepted.

I thought about how I was always getting in trouble for having "fidgets" in class (my old-school favorite fidget was a retractable ballpoint pen with a button on top which I would click until my Spanish teacher took it away and gave me detention), and how we've come a long way in recognizing that fidget objects can be healthy devices which can help people concentrate.

I thought about how my fourth grade teacher called me out in front of the whole class for scrunching my nose like a rabbit, repeatedly, while I was silently reading, and how humiliated I was, and I was proud that my daughter felt safe enough to engage in her verbal "squawking" during times of stress and excitement, because we've never shamed her or tried to restrict it. It's just a really sweet, cute part of who she is.

And, just like that, ABA therapy was off the table for us, and for our children. We'd rather spend our time helping others to understand, accept, and embrace neurodiversity than spend it trying to mask the neurology and personalities of our children, who are amazing and perfect, as they are.

So, it's not so much that I want to be right about ABA as it is that I want others to consider that they may have it all wrong, when it comes to educating and serving autistic children. What if there's a better way? What if -- rather than trying to force them to be "less autistic" -- the best way to help them is to educate everyone else around them about neurodiversity? What if promoting autism ACCEPTANCE is superior to downplaying autism "SYMPTOMS/BEHAVIORS?"

Anywayyyyyyyyyy... I have to go back at 11am with Bravo tomorrow.

What do you want to bet that Mr. Psychologist will be all too keenly and freshly aware of my own personal hand-stimming (specifically, "clicking" my fingernails by placing my thumbnail under one fingernail, then pushing up and down, creating a satisfying series of  "clicks" as the nails pass over one another)?

Say "quiet hands" to me ONE firetrucking TIME... I dare you.



"Like" The Gonzo Mama on Facebook, and don't forget to see what's cooking with Sexy Vegan Mama today!