"I Don't Remember You Being So... Autistic"

Image is of me, a pink-haired,
female-presenting person
wearing a black and white top
with a black and pink scarf and
pink over-ear hearing protection.
Background is lilac-colored.

Believe it or not, there are people in my world who still have a hard time accepting that I am autistic, because it doesn't fit with their memories of me in childhood or early adulthood. Some of those people have openly stated, "You never seemed autistic to me." Sometimes, I get the feeling they intend such a statement to be a compliment (it isn't). Other times, it seems to be more of a statement of doubt regarding my diagnosis.

There are others who are able to easily accept and understand that I'm autistic and always have been, but some have suggested that I've become "more autistic" over time. Is that even possible? I mean, being autistic isn't like being caffeinated. I haven't just been pouring myself an extra cup of The Autism every morning for the last few years.

Here's what I've come up with:

I'm exactly as autistic as I have been since birth. However, what those folks from my past remember as me being not-autistic or not-as-autistic is actually autistic me, in younger form, with more energy and desire to mask my neurotype and try to "pass" in an allistic (non-autistic) world. 

Whether they know it or not, what those people are saying is:

You used to put in more effort to make people like me feel more comfortable with you, despite the toll it took on your emotional, physical, and mental health.

The thing is, I never did "pass." I was always treated like an outsider by most of my peers, and the few people who did accept and value me knew exactly who and what I am. Maybe they didn't have a word for it ("autistic"), but they knew I was different than most people, and assimilation was not a requirement for their friendship. 

It took me a long time to realize two important things: First, the energy I spent attempting to appear like others was wasted... I would never be an insider to certain groups. Second, there are people out there who do not demand that energy as a condition for acceptance. 

Those two realizations were life-changing.

No one outside my home knew it, but I could barely get through the day at school when I was young. I would come home and completely melt down--often in violent, harmful ways. I didn't have the knowledge or tools to understand why it happened, and I wished so very much that I could control it, but I couldn't. 

When I went off to college, there was no "home" to melt down in. My campus was very active and involved, and cultivated a climate of connection, so there was a lot of pressure to be social at all times. By the end of the first year, I was so burned out I had to drop out. 

Entering the workforce as a young adult was much the same. I had to get through each day, engaging with coworkers and clients or customers, until I could break away and break down. My "melt down" actions took different forms, and self-destructive or risky behavior was often how I dealt with the emotional toll of feeling like I had to be "on" all the time. 

As we grow up, a lot of societally-enforced messages about socializing and interacting with others are either precisely and methodically taught, or reinforced through aversive responses. That is, we are taught to say "please" and "thank you" and to share our things directly, but we are indirectly taught things like forced eye contact ("Look at me when I'm talking to you!"), that we must refrain from oversharing about our special interests ("Give it a rest, already! No one cares that you like to read about serial killers!"), and that we must--at all costs--try to behave, dress, speak, and present like our allistic peers ("Maybe they wouldn't tease you so much if you made more of an effort to fit in.").

The result is that every interaction ("Good morning," for example) is dominated not by the external connection but by internal struggles and conflict. 

Am I making enough eye contact? Too much? Am I staring?

Am I talking too much? Not enough? 

Is it my turn to talk? 

Are they getting angry? Bored? Annoyed? 

Stop fidgeting! 

Look at them when they are talking to you! 

Don't talk about serial killers!

Act interested. It doesn't matter if you aren't.

What does "interested" look like?

Pay attention!

Don't stare!

Look at them when they are talking to you!

Add to that the pressure to make and have friends, when such relationships are confusing and confounding. Autistic kids and young adults are often taken advantage of because we are taught a lot of "rules" about making and having friends, and we assume that if we hold up our end of the deal (Be Kind. Share Your Things. Be Helpful.), other people will automatically be our friends. And when we think a person is our friend, we will often do what that person wants without questioning because we assume everyone follows the same rules about making and having friends. We may also make inappropriate overtures, such as gifting an expensive or personally precious item to someone who we think is our friend. The problem is, that person may or may not consider us a friend, and such overtures clue allistic peers in to the extent of our desperation for acceptance and make us targets for exploitation. 

The pressure to be accepted may never fully go away. I'm convinced of that. I'm 47 years old and it still hurts when I'm rejected by peers after I've followed the "rules" of making and having friends. It isn't so much that I truly need those relationships as it is that I've been conditioned to believe I need them, so the failure to cultivate them feels like personal failure. 

However, a couple years ago, I stopped trying so hard.

Despite the loss of a household member to COVID-19, the rest of the world shutting down proved to be incredibly healing for me. I no longer felt pressure to be "on" all the time, and my mental health improved.

I realized it was the culmination of an incremental process of letting go of my own expectations that I would be able to assimilate into allistic culture, as well as eradicating my tendency to capitulate to the expectations of others. I had slowly been putting less pressure on myself to hide who and what I really am, and learning to embrace my true self. 

Shockingly, I didn't fail to succeed. I honestly expected to, but I was so weary I didn't care. I'd grown up believing that if I didn't "at least try to fit in" and meet the social and communicative expectations of others, I would be not only alone, but also barred from any opportunity I might want access to. 

I went back to college during the 2020 shutdown, but I did it on my own terms.

I reached out to every professor before courses started and introduced myself. I told them I'm autistic, and what to expect from me in terms of communication and interaction. I told them my communication is sometimes considered blunt, but it is always honest. I stated eye contact is difficult for me, and lack of it should not be taken as lack of attention because I hear and learn more when I'm not forcing myself to maintain it. I told them what my needs are in terms of receiving communication and specifically, critique: Direct is best, because I won't pick up on suggestions offered gently. I told them what accommodations I qualified for through Disability Services, and accommodations I need that Disability Services can't offer me. 

I figured I'd just put it all out there, and take the pressure off myself to be or behave in any way that was inauthentic. If I was met with rejection, so be it, but I wasn't going to add the stress of having to "perform" as an allistic-passing person to the stress of being a non-traditional student who was already juggling parenting of multiple kids with newly added college commitments.

I wasn't rejected. 

Instead, I was thanked for the frank and productively critical disabled rights perspective I brought to classes. My work and talents were appreciated. Although I had a hard time relating to many of my classmates who were the ages of some of my kids, I found connection with several of my professors, and learned I am really, really good at a lot of things when I'm not distracted by forcing myself to behave or present in ways that are not natural for me.

I've even made a few authentic friends, and it's comforting to know and understand the parameters of those friendships. There are no surprise rejections because they began with me being open about who I actually am, rather than a forced, performative version of myself I will ultimately be unable to maintain, longterm. 

Living authentically and openly autistic has been personally freeing, and it has opened far more doors for me than trying to "fit in" with a culture that has overwhelmingly rejected me in the past.

It makes some people uncomfortable.

It makes some people think I've become "more autistic" over time.

It's distressing to some people that I don't do more to make them comfortable around me, as I have in the past. 

It makes some people think they are invited to critique my deliberate and conscientious decision to not cultivate in my autistic children the same lifelong pattern of self-abuse I developed. I am not interested in forcing them to mask their autistic behaviors, communication, and ways of experiencing the world. I don't teach them they need to change. Instead, I try to teach them about what I've learned about allistic people, and tips for engaging with them, when we must, without compromising or apologizing for who we are.

I received a letter from my mother-in-law last year, detailing all the reasons she thinks I am failing my children, and all the reasons why people "hate you... but would never say so." Most of the things she listed were to do with my (autistic) communication style and ways of being in the world, whether she realized it or not. Her assessment was that she thinks I need to "find Jesus." (Been there, done that... dig far enough into my blog or read my first book and you'll find it, along with some seriously misguided political beliefs that I've since disavowed.)

I've found myself, and it's enough.

I am enough.

I'm exactly as autistic as I have been since birth. That hasn't changed.

What has changed is my willingness to compromise my own well-being--and that of my children--in order to gain the acceptance of people who are never going to fully grant it, anyway.

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

Prioritizing My Health Means You Won't Be My Doctor, If You're Not Trauma-Informed

[Image is white text on a dark gray background.
Text reads: "I need you to stop crying. It's making my job
more difficult." -- Some asshole doctors I've had to see.
Watermark at bottom is for TheGonzoMama.com]

CW: This post contains discussion of gaslighting by medical practitioners, child sexual abuse, rape, and other topics that may be difficult to read, for some readers.

Today, I'm going in for my first pelvic exam in 14 or so years. During that lapse in care, I've convinced myself that I'm dying of cervical cancer on more than one occasion, but even that fear hasn't prompted me to return to the stirrups.

Not after what happened, last time, in 2006.

There I was, in a horrible gown that did nothing to preserve my dignity, on my back, with my feet at an awkward elevation. The (male) doctor forcibly pried my knees apart as I cried and apologized, trying to explain that I was sexually abused as a child, and raped on more than one occasion as I got older.

In the best way I knew how, at the time, I was begging for understanding and accommodation. I received neither, and I wasn't well enough versed in self-advocacy to stop the exam, and walk out.

Neither was my husband versed in survivor advocacy, as he sat beside me, holding my hand and trying -- unsuccessfully -- to soothe me.

When the doctor told me to stop sobbing because "it's making my job more difficult," my husband doubled his efforts to try to calm me, but they weren't working.

When the doctor said, "This is part of being a woman. Millions of women are able to get this done, every year... Why don't you suck it up, so we can get this done?" I didn't protest.

I dissociated.

I left the appointment feeling as violated as I did after being raped, and vowed never to go back.

And honestly, I wish that was the only time I experienced gaslighting by a medical provider, due to my personal trauma history, but it wasn't.

Last year, after multiple visits to my primary care provider for a string of mysterious -- but serious -- symptoms that included unbelievable fatigue, weakness, migrating piercing pain, and the inability to walk some days, I begged him for a referral to Neurology, or Rheumatology, or both.

I was pretty sure I had fibromyalgia, and I created a list of my symptoms consistent with the condition, as well as evidence I found online linking Post-Traumatic Stress Disorder (PTSD) with fibro.

"I know my body, and something isn't right," I said.

"Well, you ARE at the age (44) when things in the body start changing. There's a good chance this is hormonal," he said.

"No. You don't understand. I can't pick up my toddler. I can't stand at the mirror long enough to put on makeup. I can't lift my wok to cook dinner. This isn't normal."

"Here's what I think," he said. "I think you have a great deal of unresolved stress in your life, and it's manifesting in what we call Somatization Disorder, or Somatic Symptom Disorder. Do you know what those terms mean?"

"They mean, basically, that it's in my head, right? That my mental state is making me physically sick. That I'm literally sick in the head, and it's fucking up my body. Do I have the gist of it?"

"Yes."

"Listen, here's the thing. Other than my body not working, I'm on top of the goddamn world. The legislation I've been working on the last five years finally became law. I'm doing well in my business. I have friends and supportive social connections. I just want my body to work. THIS ISN'T NORMAL."

"I think you're really underestimating the effect that stress has on your body. Especially since you have a PTSD diagnosis," he said. "I'll give you a referral to a psychologist, but that's the only referral I'm going to give you. You haven't reported anything to me that warrants a referral to either neurology or rheumatology."

I started sobbing and crying, uncontrollably. I was so frustrated at not being listened to, and not being heard, I couldn't do anything else. I tried to protest through the heaving sobs, but he interrupted.

"See, this is what I'm talking about. Your emotional response is not in line with the situation. This is a VERY concerning amount of emotion, and it's overwhelming for me."

For him.

My emotional response to being talked over, gaslighted, and unheard was overwhelming for HIM.

I kept the appointment with the psychologist, who spent about ten minutes with me before essentially saying, "Oh, no, honey... This doesn't sound like somatization. You need to see a neurologist or rheumatologist." And then she put in the referral.

A few weeks later, after a ton of tests to rule out other possible causes, I received a diagnosis of fibromyalgia.

To no one's fucking surprise.

I mean, thank God the "gatekeeper" was trauma-informed, and refused to actually BE the gatekeeper my primary care provider had hoped she would be.

I'd been looking for a new therapist, anyway, since my old counselor is awesome, but I had to pay out of pocket, since he doesn't bill insurance. I asked the psychologist if she'd do therapy with me, and she agreed. I really like her, and think I'll continue seeing her for the long haul.

But last year really was a turning point for me, when it comes to what I will and will not tolerate in my health care.

And the number one requirement I have for all providers, now, is that they MUST be trauma-informed.

What does that look like?

Well, for me, it means my history of trauma won't be used "against" me, to overlook real and concerning symptoms.

It means providers won't touch me without warning or permission.

It means I won't be shamed for avoiding certain practices or providers, due to traumatic response.

It means I won't be gaslighted.

It means I won't be made to feel inferior because I struggle to endure invasive procedures that others are more easily able to cope with.

It means my provider will actually listen to me, and not dismiss my concerns, opinions, and wishes, when it comes to my care.

It means that my provider will understand and not be punitive if I have to stop a procedure, take a break, or leave and reschedule.

It means that my providers will be willing to work together for my safety and comfort -- like when my therapist made a point of contacting the midwife who will be performing my pelvic exam to discuss possible triggers, and how to accommodate for them.

It means I will receive care, on my terms, from providers who see all of me... not just my trauma history.

In my opinion, ALL providers should be trauma-informed. After all, a majority of patients they will see have Adverse Childhood Experiences (ACEs), or will have survived physical or sexual abuse or assault.

I deserve better understanding and treatment than what I've experienced in the health care industry, and so do you.

My health is too important to be put on hold out of fear. And so is yours.

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

#AutisticsSpeakingDay: Growing Up Autistic Without a Diagnosis, and the Importance of Community

Me as a young child, with blonde hair and dressed
in a pink jacket with a pink faux fur collar,
looking down at a red rose.

CN: mention of suicidal ideation

On Autistics Speaking Day, it seems appropriate to reflect upon the importance of community, but in doing so, I couldn't help but think about what life was like, before I found it.

I was not a child who was indistinguishable from my peers.

Instead, I was a child who stood out for various reasons:

My mom says when I was a toddler, I didn't point out things that were readily apparent to others. That is to say, when we were in the car and drove past a herd of cows, I didn't point, and say, "Cows!" because obviously, there were cows. Why point it out? Everyone can see them, so what's the purpose of exclaiming the obvious?

When I did speak at that age, people thought I was older, because I spoke like an adult. And that "tiny grown up" perception followed me throughout my childhood and youth, and a lot of times, it stood in the way of making friends, because kids my age thought I was arrogant, or weird, based on the way I spoke and tried to engage.

When I started school, I interrupted and corrected teachers and other students, and never understood why that was viewed as rude, disruptive, or inappropriate -- and certainly never understood why I was reprimanded or disciplined for it.

I had vocal and physical stims that were pointed out and mocked so many times by teachers and fellow students, I learned to try to stifle or hide them. I'll never forget my fourth grade teacher -- noticing how I scrunched my nose repeatedly during silent reading -- calling out from her desk at the front of the room, "That's not attractive, Christina-Marie." The entire class, naturally, turned to look, and laugh.

I tried to pretend to like the things my peers liked. I tried to look the way my peers looked. I tried to talk like my peers talked. I devoured "girl culture" magazines, like YM, Teen, and Seventeen, hoping to unlock the secret to being accepted by the other girls, but nothing ever "fit."

I did have a scant few friends that included me, but I always felt like an outsider, and worried so much that if I stopped trying so hard to be like them, they'd reject me. I probably imploded a lot of connections, either due to tiring of masking and pretending, or just sheer anxiety over what I imagined as inevitable... it's easier to walk away, than to be pushed away, you know?

I never figured out how to fit in with other kids, and I always preferred books to people, because books were never complicated. Books never had indecipherable expectations.

Teachers were equal parts fascinated, and frustrated, with me. If a subject interested me, I would dive into it voraciously, going far beyond the assigned coursework, but often became so fixated on a topic that it was difficult for me to "shift gears" and move on. And my struggles with executive function were hard for them to see, until they caused a "crisis."

For example, my senior year, my English teacher -- who recognized that writing poetry was my jam, and that writing reports on books I'd already read several times was not -- assigned me to an independent study for the second semester. "Go publish a book of your poetry," he said.

I spent nearly all of the semester studying publishing, design, and layout (instead of writing content) because I wanted the finished product to look great, lost a lot of my notes and original work, and ended up scrambling the last week of the semester to throw something together. It turned out really shoddy, and I could tell he was disappointed, but when I tried to explain how difficult it was for me to manage my time and materials, he didn't understand. He'd expected more from me, and I couldn't figure out how I'd failed so completely.

And there always seemed to be rules about how to be in the world that I didn't understand.

Be honest! But not too honest... don't tell someone you think their haircut isn't flattering, if they ask you what you think. Instead, say, "Wow! It's so different!" or something like that, because it's rude to say, "I liked your hair better, before."

Be yourself! Unless your "self" is the kind of "annoying" person that doesn't know how to wait for their turn to talk. Or unless your "self" is a person who speaks or acts differently than their peers. You should at least TRY to fit in! 

Express yourself! But not like that. No, don't do that. I mean, express yourself, but don't expect people to understand you, if you do it like that. There is something to be said for conformity, at some level. Conformity keeps you safe. Non-conformity makes you a target.

Follow the rules! But not all the rules need to be followed, all the time. Some rules are more important than others. And some people don't need to follow the rules, and sometimes, there are rules that you won't know, until and unless you fail to follow them.

Most of my childhood and youth was lonelier than anyone knows.

I spent equal amounts of time trying to be noticed, and trying not to be seen.

I entertained thoughts of suicide more often than I'm comfortable admitting.

"Why can't I...?" was a common mantra of self-hatred.

Why can't I make and keep friends?
Why can't I fit in?
Why can't I say the right things?
Why can't I do the right things?
Why can't I figure out why they don't like me?
Why can't I JUST be happy?
Why can't I JUST be "normal?"
Why can't I just... be accepted?

Not being diagnosed as a child created a fantastic incubator for self-loathing.

I never felt "seen" for who I was, and I could never figure out what was "wrong" with me.

Learning a few years ago that I am autistic was like a baptism, if you believe in that sort of thing. It washed away everything I thought about myself that had come before -- even if it didn't erase the scabbed-over pain of rejection and being mocked. It made me new, and whole. It gave me hope.

It also gave me community. And inspiration.

It gave me the type of friends I so longed for when I was younger -- friends who understand, respect, and celebrate who I am.

A welcome byproduct of that discovery was that it helped me to reconnect with and establish fresh relationships with people from my youth. No masks. No posturing. No more longing for friendships based on projection. Just, "Here I am. My world is quite lovely, and you're welcome to be part of it, if you'd like."

I am more comfortable with who I am, and the world around me, now that I've been able to connect with autistic peers and mentors.

That comfort and security are now so much a part of my being that I have no hesitation advocating for myself, or my children, when I or we need accommodations. I make no apologies for the way I need to access the world, and I don't encourage my children to, either.

It is so vital to me that my autistic children not only have a strong sense of identity, but also a fierce sense of community.

I never want them to struggle with trying to exist or behave in ways that are not genuine to them, and I never want them to feel like they have to hide parts of who they are, in order to be accepted, or listened to, or heard, or respected.

It is boggling to me that some parents don't want their children assessed for autism, or don't tell their children they are autistic, because they "don't want to stigmatize them."

To me, the only stigma surrounding autism is from people who don't understand it, or accept it.

To me, not knowing I was autistic was so much more harmful and painful as a child and young adult! Because I didn't understand who I was, I wasn't able to connect with the world in any sort of genuine way, and it was lonely-making.

I still struggle with things, at times. Identifying and explaining my emotions, for example. Working through and expressing those emotions, if I can identify them.

That's one of the reasons I started seeing a new therapist, recently.

She didn't have any real background on me, outside of knowing I was hoping to find a counselor who is trauma-informed, and knowing that I had experienced some significant gate-keeping by a medical provider, earlier this year.

She made notes as I went through a short list of topics I'd brought.

At the end, she said, "I'm looking over the notes I've made during this session, and I'm curious... Have you ever been assessed for autism?" I hadn't mentioned being autistic to her.

There wasn't a note of pity in her voice. There wasn't any pathologizing. It was strictly an acknowledgement of how I communicate, and of who I am, and how I relate to the world.

She sees me.

I explained how I'd found so much support in the autistic community, and she celebrated with me.

I knew I'd found a safe place. I'd found a place where the need for community is not only acknowledged, but when it is found, it is celebrated, and recognized as a strength.

The autistic community gives me strength, and so much more.


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

Teaching Kids About Neurodiversity and Self-Advocacy

Image is of almost-13-year old Snugglebug, a female person with dark hair and green eyes, with her mother, a female person with pink hair and green eyes. They are both smiling at the camera.



Update 9/10/19:

I didn't expect for this post to be so widely-read, but I am glad that it has been, and continues to be.

I would be remiss if I didn't point out the ways folks can promote understanding and acceptance of neurodiversity in their own communities.

The first thing, obviously, is to talk to your children. Make conversations about neurodiversity part of routine discussions in your home.

Another powerful thing you can do is to support neurodiversity libraries in your area -- and beyond.

If you're so inclined, please head to Facebook to "like" my brand-new neurodiversity library, North Central Washington Library for Education on NeuroDiversity (NCW LEND), and -- if you're able -- please consider sponsoring a book from our library wishlist on Amazon. Thank you!

__________________________


My Snugglebug will be 13 in a few short days.

I love this age -- this stretching of wings, testing of boundaries, questioning of All The Things. It's pretty amazing to see a once-child morphing into an almost-adult, and begin to embrace their passions.

Snugglebug is simultaneously blessed and burdened by an abundance of compassion, empathy, and understanding of social justice.

I say "blessed," because it is a notable gift to instinctively see all people as worthy of dignity and respect.

I say "burdened," because... Because sometimes, the world is a pretty overwhelming place for those who are attuned to the mistreatment of others. Once injustice is seen, it can't be unseen, and when it's everywhere... it can make a person begin to lose hope.

That being said, Snugglebug is a fierce self-advocate, and an advocate for others.

This space -- this time of life -- she's in is simultaneously beautiful, and raw.

She's full of energy, right now, and tackling ableism every time I turn around. She knocks down one challenge, and is immediately ready for the next. I have to remind her sometimes that a little bit of down time for self-care and spiritual nourishment is not only okay, but necessary.

Snugglebug is neurodivergent. That is, her neurology falls outside the societal expectation of "normal." She has an Individualized Education Program (IEP) at school, which provides reasonable accommodations for her to access and navigate her education.

We've made a point of including her in IEP meetings and discussions -- even before she felt ready to significantly contribute her own ideas. This was, and is, important to us, because:

• We presume competence in our children.
• We want her to see advocacy in action.
• We want her to see her parents and others standing up for her, and that she is worth advocating for.
• We want to model to her effective language for self-advocacy, when she's ready to use it.
• We want her to have a voice in plans that involve her.
• We value her input, when it comes to effective strategies and accommodations for her. She is the authority on her own lived experience.
• We want her to hear and know what is in her plan, so she can self-advocate when it's not being followed.

You see, I am NOT my daughter's voice, nor is any other parent the voice of their child.

Our job, as parents, is to help cultivate confidence in our children, and to amplify their voices until they're ready to independently assert themselves... but never to speak FOR them.

We talk a lot about neurodiversity in our home. 

We talk about how differences among brains and development are normal within nature, and among humans. We talk about how some people are good at certain things, but might need support to do other things. We talk about how everyone -- no matter how their brain works -- is worthy of respect and support.

And, we talk about ways to stand up for ourselves and others.

As a result, here are a few actions which Snugglebug has independently taken in the last few weeks:

• When a speech therapist was telling another child not to "squawk" during instructional time, Snugglebug was able to identify to the therapist that the child was vocally stimming, and that some people listen better when they stim. She stood up for the other child, and reminded the therapist that autistic people should never be forced to stifle or abstain from stimming.

• When a new teacher, on the first day of school, emphasized to the class the importance of maintaining eye contact when the teacher is speaking, Snugglebug was able to write a thoughtful, respectful letter to the teacher, reminding her that eye contact is difficult or even painful for some people -- including Snugglebug -- and that her teacher's words made her feel unaccepted, misunderstood, and unworthy. The teacher was receptive, and thanked Snugglebug for broadening her understanding of the students in her care.

• When a different teacher refused to allow Snugglebug an accommodation that is in her IEP, Snugglebug was able to correctly identify that she was, by law, allowed the supportive accommodation. She had to do so in front of her entire class, because the teacher had denied the accommodation, in front of everyone. She was made to go to the office until the vice principal confirmed to the teacher that the accommodation was in her IEP and she should be readmitted to class... but she didn't give up. She respectfully stood her ground, because she knew her rights.

(I've shared these examples with Snugglebug's permission.)

It's important to note they most likely never would have happened if we didn't talk, as a family, about neurodiversity.

She wouldn't have had the words to speak about stimming, and eye contact, if we hadn't discussed, as a family, that some people have different needs than others.

They most likely never would have happened if we had shielded our child from her diagnoses, because we "don't want to stigmatize her," or "don't want her to be defined by her diagnosis," or "don't want to label her."

She understands who she is, how her brain works, and what will best help her to be successful. She's not floundering about, in an educational system designed largely for neurotypical students, without proper supports and access.

They mostly likely never would have happened if we didn't presume competence, and allow her to be included in conversations about which supports are most effective for her. 

She knew that provision was in her IEP because she, herself, had asked for it.

"Mom, why do I have to be the one to stand up for what's right?" she asked me, the other night. "Why don't people just naturally do the right thing?"

There it is, I thought. There are the first signs of weariness. The first hints of recognition of the enormity of the fight. The first bits of realization creeping in, indicating that the fight for justice and equality is never over.

And my heart broke a little bit.

She'll be 13 in a few days.

Thirteen is far too young an age for human beings to become cynical. 

It is far too young an age to feel the weight of injustice crushing down upon those still-developing shoulders.

I have to believe there is hope. And I need my daughter to believe it, too.

"Because you get it, sweetie. You understand things that a lot of other people don't -- like that everyone deserves support, and respect, and dignity. You understand that true inclusion benefits everyone. You understand that injustice is all around, and that even though some people mean well, their actions or beliefs are often hurting others.

And, because you understand these things, you are in a position to change them, with your voice.

You are in a position to set an example for those who don't know they can stand up for themselves. 

When you stood in that classroom and said to that teacher, 'I believe I am allowed to do this, because it is in my IEP. Could you please check?' you showed other students in your class that it's okay to ask for and receive accommodations. You showed them it is okay to make sure that everyone has access to education. 

Maybe there are some students in there who have needed to self-advocate, but didn't know they could, or didn't know how.

And now, they've seen it in action. They know how it works.

And do you think that teacher will ever send another student to the office, instead of providing the accommodation the student has asked for?

You taught the students, AND the teacher.

And you taught the teacher who was insisting on eye contact. You did it in a respectful way, and helped her understand that not everyone has the same capacity or need for eye contact. She probably won't place that same emphasis on eye contact, and alienate some students, again, next year, right?

So things will be a little bit smoother for the next students who come along.

Every time you stand up for yourself, and others, there is change. It might be a little bit hard to see, and it might feel tiny, but this...

This, honey, is how we change the world.

One small, or medium, or great big act at a time.

And I want you to know that you have ZERO obligation to continue to do this work, if you don't want to, or if it gets too hard, or if you need a break, or it takes a heavy toll on you.

I will ALWAYS support you, no matter what."

She was silent for a few moments. I thought I'd overwhelmed her, or scared her, or upset her in some way.

But then...

But then, she said, "I think I'm okay. I like using my voice. I think I'm going to keep doing it. And the more people that learn, the more people there will be to help teach others, right?"

There, in that moment, I saw a glimpse of the adult she's becoming, and of the world she is daring to help create.

In that moment, I felt something that's hard to feel, some days.

I felt HOPE.

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

Toilet Paper, My Vulva, and the #StrawBan

Image is blue background with four text
blocks. Middle text block reads:
"How to react when a disabled person discloses
their access needs to you: (Explained by narwhals)

a small circular text block/bubble underneath is next to a bright pink cartoon narwhal and reads:

"I need a specific accommodation so that this space is accessible to me!"

The large left side text box has large red letters that say "YES!" on top of black text that reads:

"I am sorry that this space is not accessible!
Everyone deserves to be included, so thank you for bringing this to my attention! You certainly know your needs best and it would be incredibly rude and ableist of me to assume that I know better!
Can you help me by telling me what I need to do or directing me to information so that I can find ways to solve this inaccessibility problem?
We can all enjoy this space together!"

A smiling cartoon orange narwhal is under the text.

The large text box to the right has large red text that reads "NO!" on top of black text that reads:

"But why?
Have you tried doing it this way?
You don't look that disabled.
Why didn't you stay at home if you need so much help?
Are you sure you can't do this instead?
What kind of disability do you have?
That is rude.
How much will this cost ?
Just because you're disabled, that doesn't mean the world has to bend to your will.
You are being very selfish.
Do you have any proof that you need this?
Everyone else is doing it this way.
My brother's co-worker's second cousin once removed has the same disability that you have and they do not need this accommodation.
Wow, it really hurt my feelings that you think this is not
accessible. "

A frowning green cartoon narwhal is under that text.

neurodiversitylibrary.org watermark is on the bottom left of image.Someone made a choice (without consulting me) about my access to necessary equipment I rely upon for my health, independence, and well-being this week, and I'm not talking about the Seattle Straw Ban, although I've spent a great deal of time discussing it on my personal Facebook page and elsewhere, recently.

No, I'm talking about the Great Toilet Paper Swap of 2018, which shall henceforth evoke visuals of little pilled rolls of fiber, and friction burns in delicate places.

Here's the thing... When Mr. Wright went to the grocery store and saw that my preferred brand wasn't available in the multi-roll package with the roll count he preferred (for savings), he thought it was No Big Deal (NBD) to get a different brand, and save a few dollars in the process.

Saving money was his primary goal, for the good of the family, and he felt accomplished in being so conscientious. I think a lot of us can relate. Being responsible and conscientious makes us feel good about ourselves.

So, what does this have to do with the straw ban?

Plenty.

The first time I tried using the bargain toilet paper, it fell apart. It rolled up into little wads that separated from the sheet, and... clung... to my skin. It was a firetrucking disaster, hygienically speaking.

Access to good hygiene is -- at best -- a health concern, and -- at worst -- a matter of life and death. I think we can all agree on that.

But for many people with disabilities, going without plastic straws isn't a question of how much they care about dolphins or sea turtles; it can be a matter of life or death.

Maybe I'd changed my technique? Maybe I needed a bikini wax? I couldn't figure out what was causing the structural failure of the paper, and I really tried to make it work. I tried dabbing, instead of wiping. I tried drip-drying before patting dry, instead of wiping.

Nothing improved the performance, and it fell apart when I helped my toddler post-potty.

Clearly, THIS SUBSTITUTE for my usual toilet paper wasn't compatible with MY INDIVIDUAL NEEDS, or those of other family members, even though I tried everything I could think of to make it work, because I like to save money, too. I like to feel accomplished and conscientious, just as much as my husband does.

Maybe this paper works for other people. Maybe it works for people without sensory issues, or who have different skin, or who only use it to groom butterflies, or whatever. But it doesn't work for my family.

While reusable straws and redesigned cups may be a great solution for most people, they are not an option for many people with disabilities. For example, paper straws, which are most often cited as the best alternative, are not temperature safe, often dissolve in water and can become a choking hazard. As for lids designed to be used without a straw, they require the cup to be lifted by the user, which many people cannot do.

So, I went to Mr. Wright, and I said, "Hey. I know you don't have a vulva, so your experience is going be different than mine, I know. You don't have all the extra folds and bits that come with vulva ownership, so you might not understand, but this new toilet paper really doesn't work. It keeps self-destructing. It's kind of gross, and could we get rid of it, and replace it with the stuff we normally use and rely upon? Could we donate it to someone who might be able to use it without tissue issues?"

And he said, "Wow! I didn't know that was happening! As the only male in the house, I didn't that about how changing our toilet paper might affect the rest of you. I just thought about the savings. Thank you for letting me know. Of course, I'll make sure you have toilet tissue that works for you. Your vulva is important to me!"

I know some of you are wondering why this exchange was, and is, significant.

I know some of you are thinking, Of COURSE he should get you the toilet paper you need. It's such a simple thing.

And, I know others of you are thinking, What's the big firetrucking deal? It's TOILET PAPER! Just go get some, yourself, or use what's available, and deal with it. WHY IS THIS SO HARD?

The toilet paper doesn't work for me. It doesn't work for my daughters. He loves us. He wants us to know we're important. He's headed out to get toilet paper we can use.

He's showing us his respect and understanding, by making what we need available. He's showing us we're important to him, and our needs matter, even though they aren't the same as his.

It was so simple, and so easy to resolve. I communicated a need. I explained why the conscientious, money-saving solution didn't work for me, personally (or the other females in our home), and what was needed, instead.

And he responded by acknowledging my need, understanding that his experience is not the same as mine, and offering a solution that ensured I have access to what I need.

That's how it should be.

Unfortunately, I've watched the disabled community get marginalized time and again since news of the straw ban hit.

Many disabled people rely on single-use plastic straws, as a matter of survival. My grandfather, who was paralyzed in his final years, was simply one of many, many people who rely upon single-use plastic straws as a matter of access, independence, or literally life-versus-death.

Although there are numerous alternatives to plastic straws, such as metal, acrylic, glass, wheat- or corn-based compostable, paper, and more, some of those alternatives don't work for some disabled folks.

For my grandfather, metal, acrylic, glass, or other rigid designs not only posed a choking hazard, but also posed an elevated risk for cuts, tooth damage, and more, since he had tremors and diminished jaw control.

For folks who have allergies to corn or wheat, or celiac disease, bioplastics or straws made from those materials pose a definite health risk.

Paper straws tend to break down and can pose a choking hazard, especially for those who may need more time to consume fluids.

Some of the alternatives don't work for thickened liquids required for the nutrition of some disabled people.

I could go on, but suffice it to say that for some people, alternatives to single-use plastic straws don't work.

Naturally, for the good of the planet, we should all do as much as we can to reduce our planet's reliance on petroleum products, and reduce our waste and consumption of single-use packaging and utensils as much as possible. HOWEVER, it's simply not possible, for some of the disabled community.

Further, some of the discourse on the subject has been particularly disturbing, as disabled folks are being openly ignored, talked over, or shamed for their needs when they try to explain to the abled community what their specific needs are, and why an outright ban doesn't make for good policy.

(Image is a pink cartoon narwhal under a white bubble with question marks, an image of the earth and a plastic straw. Black text to the left reads: 
"How do plastic straw bans hurt disabled people?
Many disabled people need plastic straws to eat and drink. It provides access and they are literally keeping some of us alive! We don't hate the earth, but we really like being alive and able to access our communities!
-Paper and biodegradable straws break down faster than many of us can use them.
-Metal straws can cause injury if they are too hot or cold and also if the person has a disability that affects movement and motor skills.
-Reusable straws are great if you have the ability to wash, store and bring them with you every time you leave your house. Many disabled people do not.
-If you don't need a plastic straw, then don't use one, but you don't need to hurt disabled people to show that you love the earth.
-Punishing disabled people who need plastic straws to live will have very little impact on the environment but looking into creating a more viable and ACCESSIBLE alternative to single use plastic and placing greater regulations on businesses that are polluting the earth on a much larger, much more dangerous scale sure would!"
neurodiversitylibrary.org)

I've seen commenters say that the disabled should use reusable straws. When the disabled say they can't wash them, the abled say they should hire or recruit someone to come to their house to scrub their straws for them -- as if everyone has a budget to hire staff, or neighbors who are willing to sacrifice their time and effort on a regular and reliable basis, without compensation.

While the above might be, at best, attributed to the abled being out of touch, some of the backlash against the disabled has been worse:

"If you're too disabled to scrub a straw or use paper straws, you should have a feeding tube." Which, by the way, use single-use plastics, too. Ha.

"If you're too disabled to go without a straw, you shouldn't be visiting restaurants."

"We should only have flexible plastic straws in hospitals, convalescence centers, and nursing homes, because that's where disabled people belong."

"Disabled people are just making excuses!"

"Our planet is more important than their needs. Survival of the fittest!"

Readers, you may or may not know that Mr. Wright is a Norwex consultant. We use stainless straws at home. We use reusable, washable produce bags. Reusable shopping bags. Phosphate-free, natural cleaners, soaps, detergents, and more. We use dryer balls instead of dryer sheets. (Shameless plug... we get all these from Norwex, and you can, too, at the link I've provided.)

Our family -- while having disabled members -- remains incredibly privileged. We do our part to reduce/reuse/recycle, to offset the needs of those who can't.

When it comes to the needs of an already marginalized and disenfranchised population, can't we feel good about the choices we make, while ALSO providing access for those who don't have a choice?

Bottom line: If you don't need a single-use plastic straw, don't use one. The planet thanks you. But don't shame, degrade, or devalue those who do need them. Access and independence are for everyone.

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

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!

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!

Stop Saying Autism Stole Your Child

I've found a great number of really awesome groups and Facebook pages for autistic people and parents of autistic children online, and I'm sure glad for the support and education I've received from them. In fact, I read back through some of my posts from when we were going through the diagnosis process for Curlytop, and realize how uneducated I was, and what an ableist jerk and self-centered parent I was during that time of diagnosis. In fact, I almost acted like the diagnosis changed who she was, and how I would parent her when, in fact, neither of those were true.

Remember that we lived nine years with Curlytop before we had a diagnosis, and that diagnosis simply gave us confirmation of what we already knew -- that she experiences the world differently, and her neurological biology is different than many other children's.

I'm willing to forgive myself for that ignorance, because now, I know better, so I can do better.

But... I've had to leave a number of parent groups, because the parents within them are still acting like ableist, mourning, hand-wringing, woe-is-me, clueless and callous people. Their children have been autistic their entire lives, and yet they're acting like it's the end of the world.

Just the other day, I had to block posts from a Facebook page purporting to be autism advocates, because they posted something along the lines of, "We all know autistic children have singular interests. Using a gif, comment with what your child is obsessed with!" 

The level of overly-broad brush stroking there was unbelievable, and the grossness of sharing your kid's "weirdness" (and making a fun little game out of it!) just turned my stomach. It wasn't even a page I followed, but a "suggested post" from Facebook.

BLOCK. BLOCK. BLOCK.

The ones that really get me frothing at the mouth, though, are the parents who are still wailing that "autism stole my child from me."

Let me be clear... AUTISM DOESN'T "STEAL" YOUR CHILD.

Cancer may steal your child from you.
SIDS may steal your child from you.
A car accident may steal your child from you.
A predator may steal your child from you.
A non-custodial parent may steal your child from you.
Hell... A destructive cult may steal your child from you.

But, autism IS your child.

Autism is part of your child's biology, and identity.

Autism is something you'd better learn to LOVE, because that means loving your child.

By blaming and hating autism, you are, by extension, blaming and hating your child.

I get it... parenthood looks different to you than you expected. All those milestones your friends from Lamaze are sharing remind you that your child is different, and will reach those milestones in their own time. Or not.

But if you "mourn" that picture you imagined, you are missing the very real opportunity to love what is right in front of you -- your child, who is exactly who and where they are supposed to be, right this very minute, no matter what milestone they are working toward, or skipping.

I've "mommed" a lot of kids, and I'm here to tell you that parenting is HARD, whether your child is neurotypical, or not. If I "mourned" every time parenting looked differently than I imagined it, I would have been dressed in black for the last quarter of a century. (Okay, I did have my "goth" phase in the early 90s, but who didn't?)

On the real, though... you've been given the amazing gift of a perfectly complex and amazing child. Mourning your child's neurology is like getting a new car, and throwing a spoiled fit because it's the "wrong" color.




If life gave you an awesome car, I'd hope you'd drive it proudly, keep it well-maintained so it can perform its best, and cherish the hell out of it.

Your child is so much more valuable than a car!

If you really wanted a daughter, and your child was born male, would you spend years lamenting, every.single.day, on social media and in "support" groups how much you're mourning for the daughter you didn't get? Would you let your child witness, for the entirety of their lives, how robbed you felt? That your daughter was "stolen" from you? Would you let them think -- for even a minute -- that you didn't celebrate who your child really is?

That is self-centered AF.

Be proud of your autistic child. Nurture them. Help them grow. Cherish the hell out of them.

And, for the love of God, get out of your mourning, and LIVE life with your child.

Your child hasn't been stolen, but you may be stealing your child's dignity and self-worth.


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