OUTSIDE READING: I’m Sorry… My Eyes Are WHAT?

I don’t like linking to pages which include “Aspie” in the title because y’all know how I feel about that word, but this is a good takedown of an article recently published in the New Yorker which has the following within it:
 
“For parents of autistic kids, awareness is desperately important. It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors. Public recognition is vital, both for its own sake and as a means to mobilize resources for care, support, and a possible cure. ”
What is Autism? (The New Yorker)
 
I’m sorry, but what the actual hell is that about? My eyes are black mirrors? I need to be “cured” because I don’t always have the ability to be verbal, don’t necessarily want to be touched, and thrive better under a routine than not? Oh. Okay. So because parents can’t (read: won’t) provide a routine for their kids, want to force physical touch upon children for whom it can be painful, and refuse to honor their children’s different style of communication… we’re the soulless ones?
 
Neat.

 

 

“I am NOT against every form of treatment. There are some very sucky comorbid conditions that come with being on the autism spectrum, but these can be mitigated. For example, I wear tinted glasses to cut down on my visual hypersensitivities. These also help with my sensitivity to fluorescent lights and CFL bulbs. I’d like to talk about my treatments some more, but I feel that I don’t have enough information at the moment.

No, Dr. Shapin, you have it wrong when you say that we’re against all forms of treatment. We are against treatments that seek to extinguish and/or modify our behaviors.”

– I’m Sorry… My Eyes Are WHAT? (Ad Astra Aspie)

Dichotomies of Functionality

The following post includes some very personal information. I’d appreciate it if those who know me in the “real world” not use it against me or judge me for sharing it. This is a hurdle I’ve struggled with traversing, when it comes to writing about being autistic… being truly open about how it affects me. So, here it goes… on 12/15/14, I made a comment on Diary of a Mom‘s page regarding functional labels and how the spectrum is fluid & broad, not a set scale:
“The problem with those labels is that not everyone fits into them at all times and it sets unfair expectations and requirements. I range on the ENTIRE spectrum, depending on the situation. All of the ‘types’ apply to me at some point. And every autistic person has the potential to decompensate enough to hit lowest end of the spectrum or bounce back enough to hit the highest end of the spectrum (passing for NT), given the appropriate set of variables to trigger that inability/ability to process and carry out executive & sensory functionality.
 
There are so many parents who say I am not like their child and couldn’t possibly understand what it’s like, simply because I can type as I do.
 
Meanwhile, these parents aren’t around when I am rocking, smacking my head against a door, clawing at my legs, sobbing uncontrollably, unable to sort my own thoughts enough beyond just wanting to do anything and everything I can to get up and run far away from the environment causing this drop in functionality, let alone being able to sort them well enough to speak OR type.
 
They’ve never been around when I have wet myself because I can’t process executive functionality as simple and taken for granted as: ‘Hey, your body needs to urinate right now, so you should probably prioritize getting up and going to the bathroom, despite all your spoons being gone and you not wanting to switch environments or sensory input/output situations.’
 
They’ve never been around me when I can’t sleep more than 2-3 hours a day for more than a week straight and forget to eat for days at a time, unintentionally causing myself to eventually pass out from sheer exhaustion.
 
What label does the dichotomy of these (and many more) situations, inhabiting the life of the same person who can eloquently advocate online (when given the right set of variables) AND manage handling Disneyland not only regularly but also on one of the busiest days of the year (given the right set of variables AND accommodations), say about my ‘autism level’ or place on the spectrum?
 
The spectrum is fluid and no one person is static upon it. People need to understand this. Just as non-autistic people can decompensate and be an emotional trainwreck after a traumatic experience, autistic people can also completely shut down due to trauma, based on variables within our environment, our past/recent/current history of required sensory input & output, and our general self-awareness and ability to mitigate effects of said trauma and input/output requirements.
 
We are autistic individuals. There is no need to label and set up expectations beyond that. So many people are fond of the phrase: ‘If you’ve met one autistic person, you’ve met ONE autistic person.’ …and then they turn around to slap labels on us, as a means of saying that there are only a certain set of connected ways autism can manifest within our lives at all times. Meanwhile, you and I know this to be completely untrue.
 
Functional labels – including Aspergers – don’t serve any purpose other than dumbing things down for those who don’t WANT to understand. Let’s reach out and educate people to how the spectrum TRULY works and WHY it is a spectrum… not static, but constantly fluid.”
And with that, I’m off to pick up my media badge for NAMM, nerd out over musical instruments, and hang out with friends. And hopefully run into Stephen Carpenter (Deftones’ guitarist). Even more hopefully… be able to manage navigating the crowds, when I’ve been having almost daily panic attacks for a few weeks straight. Fingers crossed.

The Stars Look Very Different Today

I’m at a loss for what I can say right now and not sound trite. Heartbroken isn’t the right word, it’s more than that. That word isn’t sufficient. David Bowie has been a constant in my life and the idea of a world, without him in it, is not one I am comfortable with in the slightest.

Music is the reason I am still alive. It has been the one thing I turn to when I can’t focus, when I need to decompress, when I need to recover. My entire life has a rich soundtrack, with countless songs attached to memories. Bowie’s music holds a pretty high percentage of my most vivid and important memories. 

Of all the tattoos I have (there are many), only one is music-related. It is a small 50s style rocket ship, on my left forearm. ¾ of that arm (from the shoulder down) is our solar system – a sleeve in progress. The rocket is my Major Tom rocket. It reminds me that the spaceship knows which way to go. I got it for my parent who passed away in 2008, as he requested “Space Oddity” be played at his funeral (not only was it, I coordinated the photo montage in time to the song). That song holds deep meaning for me, for that reason.

There was the project in high school (10th grade), where I had to pick a piece of music and write lyrics for it about a piece of literature assigned to me. The background music I chose was “Little Wonder” off of “Earthling” which had just come out… I remixed it myself, as an instrumental piece. I spent more time on that than the more important part of the assignment (being an English class and all). Still got an A, but I was far more focused on getting the remix perfect, because I didn’t want to disservice Bowie. Wish I still had that (it’s entirely possible I do somewhere on a tape).

I saw him perform multiple times, but nowhere near as many times as I would have liked. I was hoping there would be a tour for the new album just released. Seeing the post on his Facebook was a punch to the gut. I was in public, having a good time and the tears came immediately. I originally saw someone post on Instagram, didn’t believe it, and then the post from his page in my Facebook feed… his family confirming. I had to sit down. I sobbed. It couldn’t be real.

David Bowie is one of the bigger reasons I am unapologetically Jennifer at all times. His spark and uniqueness gave me permission to be myself. I have always looked the way I want to look, dressed the way I want to dress, while dancing to his songs the entire time.

I could write so much more about how David Bowie has immensely impacted my life, but Maow (my black cat, who has sort of taken over in Moya’s absence) just climbed onto my lap, purring and trilling. This means I’m getting overwhelmed and need to stop.

So I’ll end with this…

Magic doesn’t die and heroes live forever… so this isn’t real. My world will always have David Bowie in it. It has to.

Public Parenting… You’re Doing It Wrong

When you post memes which say:

Imagine being a therapist… living with your anxious clients. Always on call. They can knock on your bedroom door at any given moment. They have your private cell phone number when you leave the office. You are the one person in the world they trust with all of their secrets and worries. This is parenting autism.

And make posts which include these words:

There’s that motherly guilt that makes me NOT want to leave him all alone, hanging in the wind, feeling like no one cares about him. On the other side of that, is the feeling of resentment. There’s that whisper, (or maybe it’s a scream) that says, ‘I don’t want to do this!’

 

Just sitting here daydreaming @ night. Hoping that someday [son] will find the right girl who will put up with his crap…I mean inspire him to be all he can be. 
Cheers!” (accompanying a picture of a margarita)

And post screenshots of a text conversation with your child which reads:

Son: I need help.
Mom: On my way to the movies.
Son: Call me please.
Mom: I can’t.
Son: Why not?!?!
Mom: It’s noisy
Son: Excuses.

And you put all of this out for the world to read… you’re doing it wrong. This is the type of Mommy Blogger advocates and activists rail against. This is the type of Mommy Blogger who makes us cringe. Not for the mother, but on behalf of their kids.

This particular mother has chosen pseudonyms for her sons, but still posts their pictures on her page. She posts screenshots of text conversations. She makes memes which are just whinefests regarding her self-induced stress levels. She is not a parent, she is a hostage of her own making. Of course, she touts her hard work making her sons successful young men… but I see far more complaining and negativity on her page than boasting and positivity.

And almost everything she writes is about her and how her sons affect her. Very little is discussed why they behave the way they do or giving much context to her whining, aside from what a burden they are to her and her life. This is not a support page for anyone but the mother. It does not further the betterment of the autistic individuals in question, nor does it serve a genuinely productive purpose for the parents. This is not support, it is venting and it is shaming her children in the process, for her own selfish purposes.

I was banned from the page this morning (confession: I never “liked” the page in the first place, so no loss to me) after the following exchange took place on the meme I cited above…

Me: That’s called parenting.

 

J: It is a hell of its own some days you have to scream I dont give a fuck or get me the fuck out of here. Of course I say that mumbling as I walk away. Your sanity comes first…cant help others unless you have yours first.  Yes, it is parenting but it is a different experience, until you walk it and talk it you have no idea…just my opinion.

 

Me: “Just my opinion” …I am getting so sick of reading that, like people think it’s some sort of out from being held accountable for their words. We know it’s your opinion. That’s like saying, “By the way, I wrote words.” We know. We read it.

 

What is written here is BS. Plain and simple. It is parenting and it is hard. Parenting an autistic individual is different, but not harder. It’s just hard in a different way. ALL parents have those days. All of them. Using the kid’s neurology as an excuse for needing to protect your sanity doesn’t fly. ALL parents need to employ self-care. All of them, regardless of their kid’s status as neurotypical, autistic, disabled, abled, whatever.

 

However, being available to your child at all times is part of being a parent. That’s your position as a parent; to be a guide, a support, an unconditional provider of love. Not just when you feel like it. It’s for life.

 

L: I parent an Autistic child and I agree with [me]. Our kids deserve respect no matter how hard of a time we are having. Self care is important but when it comes at the expense of someone else’s dignity and humanity, you’re doing it wrong.

 

Page Admin: Who are you to say what is harder for someone else? I’ve parented both typical neurology and autistic …autistic is definitely harder for me …for many.

 

Page Admin: By the way [me] we are a judgment free zone. You don’t have to agree, but don’t judge someone else’s experience.

 

Me: Who am I? Someone who I knows. Who is [L]? Also someone who knows. 

 

It’s harder because you make it harder. I’ve read your page and it disgusts me. You have no respect for your kids’ privacy; using pseudonyms isn’t the end all be all. You say hurtful, disrespectful things about them. You post text conversations. You shame them for being themselves. All while using their pictures, so they’re not exactly hidden. But even without their pictures, your words are more of an indictment of your own poor parenting than their perceived misdeeds inconveniencing you. Turn that judgment on yourself. Ask why they behave the manner they do; behavior is communication. If you are unwilling to learn their method of communication and meet their needs (and they are needs, not wants)… you shouldn’t have been a parent in the first place. And I have no qualms in saying that.

 

And since I know you’ll lash out at me before absorbing anything I’ve had to say, as is typical for self-absorbed parents who refuse to turn the magnifying glass on their own behaviors, I’ll bow out of this and let you attempt to project your insecurities on me (just as you do on your children).

 

Me: P.S. Stop judging your children if it’s a judgement-free zone. Don’t be a hypocrite.

 

Page Admin: Then why the hell are you here? Good bye.

 

Me: Because someone needs to call you on your self-absorbed bulls–t for once. Toodles.

And then I was banned, because the page administrator knew I was correct. She would just project her issues upon me and probably unleash a further tirade of dismissive nonsense about how I didn’t know her, her sons, and “my autism” isn’t the same as her sons and I’m not a parent, so how dare I pass judgement upon her?

Well, here’s how: she’s making her life public and is open to scrutiny. Just as I am with this page. She chooses to share certain aspects of her life – mostly focusing on how negatively being a parent has affected her life – and I’m just supposed to read her missives, which are disrespectful and demeaning to her sons, and wholly inauthentic to what is truly causing her strife (hint: it’s not autism, it’s how she chooses to react to situations). She lays blame to neurology rather than her lack of mindfulness. She projects her own feelings of inadequacy upon others and, in turn, is psychologically (emotionally) abusing her sons.

And yes, it absolutely is abusive behavior on her part to tell her son, who clearly felt he needed help in that moment, that she was busy going to the movies. She didn’t ask what he needed help with or ask him to qualify his request. She dismissed him outright. And if he was asking for help as a plea for attention, she presented the situation without clear context and should be held accountable for that. Again, potential unauthentic representation of the reality, as a means of gaining pity and/or sympathy… if that’s the case, she’s exploiting her sons’ existence and private conversations with them  to build up her own sense of self-worth.

Now, there are many parents out there who will see this as me bashing this particular Mommy Blogger. Keep this in mind: She bashes autism (projecting). She bashes her sons (projecting). She bashes herself (and in turn, projects upon others). She dismisses anyone who disagrees with her, demanding that everyone follow a “judgement free zone” policy, yet most of what she posts is full of judgements. She is snarky and downright mean to her own children. Setting boundaries is important, but enacting those boundaries can be done in a respectful manner. What she does comes off as actively pushing her sons away, not setting boundaries. This Mommy Blogger repeatedly indicates she’s resentful of her family… does she consider that maybe her actions make them resent her in return? And even worse… resent themselves?

I am not bashing here. I am laying out truths and observations based on those truths. The truths I offer are based on the reality she presents on her page. The page, where she demands people not lay judgement upon her, and where she also does nothing but judge her sons and their ability to thrive within the dysfunctional environment she has provided for them.

She sees herself as burdened with a job she clearly does not want, which is why she likens her position to being an unwilling therapist, always on call… rather than understanding that being a parent to ANY child entails being a therapist, a protector, a mentor, a friend, a teacher,  a cook, a housekeeper, a chauffeur, a tutor, a nurse, a banker, a personal trainer, an activities director, and many more vocations rolled into one. You don’t parent autism, you parent your child. You don’t have it harder as the parent of an autistic kid… you just have to parent differently.

So many parents of autistic kids like to say, “If you’ve met one autistic child, then you’ve met one autistic child.” This means that every autistic child is a unique individual and they tend to parade this quote around as a means to say I don’t know what their kid goes through, since I’m obviously an autistic adult who can clearly communicate via a keyboard, so that means I’m not autistic enough to understand. Guess what? I was a kid once, too… and autistic then. So, I get it (and I certainly get it more than a non-autistic adult might).

Every human is an individual with autonomy. We all learn differently, adapt differently, have different wants, and different preferences regardless of our neurology. The one thing which ties us together is we ALL have the same basic human needs. How we require those needs be met, however, can differ. And that’s where you have to learn how to parent differently, whether your child is autistic or not.

Parenting two non-autistic children can differ greatly, just as much as parenting one autistic child and one non-autistic child can differ greatly. Parenting is as hard as you make it and parenting an autistic child isn’t harder… just hard in a different way. You can make the conscious decision to be mindful and strive to adapt to how your child’s needs are met, making things less hard. But that’s up to you.

It frightens me when parents like this particular Mommy Blogger are considered (even if self-appointed) to be members of the advocacy community and/or as ideal people to look to for parenting advice. These are not people advocating for us. Their blogs/pages/groups are an echo chamber for those who thrive upon tearing down others in order to build themselves up again, on an ever-tilting pedestal.  These are people who are advocating for themselves and utilizing their audience for personal individual support, as opposed to making a conscious decision to be mindful and enact positive change to foster a supportive and fulfilling environment for their children. If that is not your primary objective and the predominant message of your writing as a parental blogger, and if you’re not amplifying the voices of the community you seek to advocate for, then you’re doing it wrong.

Can We Please Stop “Aspie”-ing Now?

In a Psychology Today article published earlier today, John Elder Robison, published a story regarding downright despicable revelations about Hans Asperger.

“I had some doubts about Asperger’s kindness already. Several years ago, in my role on government autism committees, I listened to allegations of all the ‘new things’ that were appearing in autistic kids. In response, I asked the folks at NIH’s Office of Autism Research Coordination where I might find the original writings of both Kanner and Asperger. When I read them, I was struck by Asperger’s cold tone. At the time I thought, ‘This guy was no friend of my kind.’ I’d heard Kanner thought we belonged in institutions, but his writing felt gentler. People pooh-poohed that, saying Asperger was just talking as a conservative German in the 1930s. Others said he had to be careful because of the Nazis looking over his shoulder.”

Asperger, as you probably know (or could easily guess), is the man for whom “Asperger’s Syndrome” is named. There has been much speculation Hans Asperger fudged the abilities of autistic children, in order to save them from the Nazis. He has long been considered a kindly savior of autistic children, while most people believe Leo Kanner (one of Asperger’s contemporaries) thought we needed to be institutionalized. There are many who insist Asperger wasn’t a member of the Nazi party, but as Robison has written, it seems Asperger identified as a candidate for the Nazi Doctor’s Association on a job application. It seems that Asperger may not have been the altruistic doctor portrayed in secondhand stories from World War II.

As Robison suggests, everyone can read both Neurotribes and A Different Key to make their own conclusions. I’d also suggest doing your own research before coming to conclusions of your own. However, having read Robison’s article, it makes me ponder… when is the autism community going to give up on utilizing the label of Asperger’s?

The people I’ve encountered who use the Asperger’s  label – especially those who refer to themselves or their kid as “aspie” – tend to fall on the side of elitism and are desperately holding onto that diagnosis – which no longer applies, nor should it – usually as a way to separate themselves from their autistic peers. What’s so terrible about being autistic that they can’t accept their authentic neurology? The same goes for parents who insist their child has Asperger’s Syndrome and refuses to refer to their child as “autistic” under any circumstances. Why are they so afraid of the autism diagnosis? Yet another reason we need to work to get rid of the negative stigma autism holds.

While I do not advocate person-first language, with regard to being autistic, I do respect the individual’s right to identify their own neurology. If someone chooses to be identified as someone “with autism” as opposed to being autistic, I may disagree with their choice, but I won’t fight them on it. I won’t fight someone who chooses to identify as having Asperger’s and I won’t individually call someone out for referring to themselves as “an aspie”… but I will definitely stick to personal beliefs on the matter.

As I’ve written in my post on functional levels, I believe Asperger’s Syndrome was absorbed into the general DSM for autism with good reason:

…we’re all autistic and there shouldn’t be these imaginary levels dividing us. All autistic individuals need – and deserve – access to the same supports and services as others on the spectrum, some just require them in different ways or for shorter amounts of time. Does that mean they should be overlooked? No.

So let’s move past these divisive forms, levels, or flavors… let’s accept that we’re autistic and work together to secure supports & services for those who need it.

And now that more damning information is coming to light about Hans Asperger, I have to ask: isn’t it time to retire that label and move toward accepting yourself/your child as autistic?

The Problem With Hillary Clinton

Before you laud Hillary Clinton’s “autism plan” please consider the following statements… 
“’As a country, we must make a priority of supporting the millions of Americans with autism, and their loved ones,’ Clinton said of the autism initiative. ‘Too many American families are staying up at night worrying about their family members, especially children, who are living with autism.’
Time
I’m “living with autism”? I didn’t realize it was sharing a living space with me. Should I start charging it rent? Making it clean the catbox and do dishes? Do parents of kids who aren’t autistic not worry about them? Sounds oddly like Suzanne Wright’s “A Call for Action” from November 2013 (the comments for which you can read here, since Autism Speaks has hidden them from view).
It is truly a great pleasure to serve as honorary chair. I’m certain that through the convergence of scientific, academic, public and political programs we can successfully develop treatments and hopefully a cure for autism.
There’s that “cure” word. Cure something which isn’t a disease? No thanks, I don’t want you to dig into my brain and re-wire me.
“How much funding will you request to study potential environmental triggers of autism?
 
‘I am very concerned about the possible links between autism, the environment and other chronic diseases. Because there is so much we don’t know, I not only support increasing funding for the environmental research authorized by the Combating Autism Act, but I’ve also introduced legislation – the Coordinated Environmental Public Health Tracking Act – that would enable us to link disease surveillance to environmental infonnation, and investigate disease clusters. This bill would provide $100 million to monitor the environmental causes of disease. I have also proposed to increase the NIH budget by 50 percent over five years and to double it over 10 years.
 
As President, I will provide a total of about $700 million annually to address autism. That funding will go toward expanding research to identify causes of autism as well as creating a task force charged with investigating evidence-based treatments, interventions, and services; improving access to post-diagnosis care; providing teacher training; providing planning and demonstration grants for adults; creating a National Technical Assistance Center; and guaranteeing quality, affordable health care.’
 
Do you believe there is an autism epidemic in the United States?
 
‘Yes. Today, one in 150 children rare diagnosed with autism, for a total of about 25,000 each year. In sum, about 1.5 million Americans and their families are affected by autism today. This national health crisis is costing the United States at least $35 billion each year. I have long been a strong advocate for individuals and families impacted by autism. I have cosponsored the Combating Autism Act and introduced the Expanding the Promise for Individuals with Autism Act, in order to ensure that Americans living with autism could have access as quickly as possible to evidence-based treatments, interventions, and services. When I am President, I will dramatically boost research funding for autism and support services for families caring for an autistic loved one.’
There are quite a few statements throughout that entire survey/interview which trouble me, from Clinton… but hey, Age of Autism is just one big troublesome website in itself.
Last year, I worked with my colleagues on the HELP Committee to pass the Combating Autism Act into law. This important bill will increase the amount and type of research we are doing to understand the origins of this disease, and help us develop new treatments – and eventually – a cure. It will also help to increase the ability of our health professionals to screen and diagnose autism as early as possible in children, so as to improve our ability to treat this disease.
 
But while we are carrying out the research that will lead us to gain a better understanding of this disorder, we cannot forget those who are and who have been living with this disease today–the families who are desperate for assistance and help with a disorder that so often shuts off individuals from the world around them.

Cure cure cure cure cure… stop.

Additionally, this article, while on a website I’m not too keen about, does have some interesting reading regarding her ties to Dr. Mark Hyman, who is known for pushing quackery and curbie nonsense. This article also touches on their ties to the same doctor.

“But her plan is better than those without a plan.”

I’d rather have someone with no plans than have a plan which promote abuse and potential genocide. Having read Secretary Clinton’s plan, which mostly sounds good – aside from promoting ABA therapies, sheltered workshops (Autism Works), and eugenics projects (MSSNG) –  can we truly trust someone to have our best interests at heart, when that someone has a long history of considering us to be a diseased epidemic who need to be cured?

Clinton’s “plan” is problematic and needs to be revised. She can do better. Other candidates can do better, as well and they have time to show us that. I’m disappointed that ASAN or any of their representatives are touting this plan as acceptable. I almost feel like I’m being thrown under the bus for ASAN to win over political favors. Demand better on my behalf, if you’re going to speak for us. This isn’t better. This is the same ol’ lip service we’ve been getting, along with the same promises to wipe out future generations of autistic folks.

Personally, I’d like to see what Bernie Sanders has to say about all this, since he’s actually on the Congressional Autism Caucus… maybe that’s my next mission.

Mutual Appreciation Society

Today, Diary of a Mom published a letter she wrote to me. It’s just as positively overwhelming reading it a second time, especially now that it’s out in the world.

Yesterday, Jess asked if she could send me a letter she wrote for me, because she wanted to post it publicly, but not without my permission. I asked if it was going to make me cry. She said it wasn’t overly mushy, but no promises. My version of mushy is different from most people’s version of mushy.

There are so many times I wind up face-down in a pillow, screaming in frustration, and feeling near defeat. A couple of days ago, Facebook reminded me of a post I made in 2013… I was ready to be finished entirely with speaking up for my peers, due to a parent bully.

Thisdamnedclose to throwing in the towel on the autism activist stuff. It’s no wonder Autism Speaks gets a bigger voice… they’re neurotypical and don’t risk a shutdown when faced with this bulls–t. I feel like such a failure sometimes. This is one of them.

My friends insisted I’m not a failure. My mom reminded me I do this because it’s something bigger than myself and it matters more than temporary feelings I may have due to the words of others. I accepted that keeping autistic kids from having to jump through seemingly endless hoops I had to, both at their age and as an adult, is worth the effort.

As I read this wonderful letter, curled up on my couch with a cat next to me (as is my normal internetting position), I laughed a couple of times and then the tears hit me… and those turned to sobs. And then laughing sobs, because that’s just how I roll. Part of my response to Jess:

There really aren’t words to express how grateful I am to you. Not just for this, but for everything you do. We’re a team. Everyone fighting for these kids… we do this together. I need you and the parents like you just as much as you need me and those like me. We need each other. The kids need us.

My mom came in and I asked if she wanted to read it. She told me to read it to her, but I didn’t think I could through the tears. I did anyway. Her response? “I told you.”

There is a tongue-in-cheek idiomatic term for people who regularly express support and esteem for one another, occasionally to the point of pretentiousness: mutual admiration society. When parents complain to me elsewhere about a lack of decent parenting blogs in the autism community, I immediately forward them to Diary of a Mom. I frequently comment on Diary of a Mom’s Facebook posts, with my two cents. She tends to defer to my comments with some variation of, “What she said.”

Rather than dwell on admiration, which does seem somewhat self-serving, I think we are more in the realm of appreciation. I know that if I ever got out of line toward a parent, Jess would pull me aside and tell me. Just as she knows I would do the same for her. Jess makes me appreciate the parents who do get it and do listen. Seeing her readers take in what she says makes me elated. It’s great to see the comments of those who agree with her, but it’s even better to see the ones who put themselves in check; the parents who say what she’s written has made them think and reconsider their words/actions. And even better than that… the occasional comment from a parent who says they’ve never commented, but they are reading and taking in everything said by Jess and the autistic adults who comment on the page. Those comments are the ones which make me truly appreciate what Jess does and to further appreciate my fellow autistic advocates… my tribe.

Parents, please understand that while it may seem like autistic advocates are not on your side, we are on your kids’ side. Personally speaking, I have their back, no matter what. And I know that, as a parent, you strive to have the same position. So, if you think at any given time we’re on opposing sides… please try to understand why an autistic advocate is taking that particular position. Ask questions, listen to the responses, take the time to process those responses. We just want your kids to thrive and live a fulfilling life; whatever that may mean to them as individuals.

This letter is why I do this. Not for the thanks, not for the recognition, but because I hope parents are reading. I don’t need feedback or validation… I just want to hope they’re reading and processing. This proves they are and makes it all worth it. Thank you.

 


 

Read more on the importance of internet privacy: http://imapartygiraffe.com/choose-your-internet-words-wisely/ and here.

OUTSIDE READING: Why Can’t We All Get Along?!?

A fantastic follow-up read to my blog post from earlier… Leah gets it.

We can’t get along if you’re exploiting your child’s diagnosis to further your overdramatic egotistical ploy for a pity party. Check your feelings at the door. Let’s work together to get your kid on a fulfilling and happy pathway to success, whatever success may be for them as an individual. If you can’t check those feelings and drop the ego… then you’re making it about you, not your child. So just stop.

Within disabilities communities there is an enormous problem related to power withgroups and individuals that claim to be working to advocate for or support Autistic people, very often (too often) without including their voices.

And part of the difficulty is that this imbalance of power perpetuates itself and insulates itself with what I can only imagine is a threatened or fear-based reaction.
– Why Can’t We All Get Along?!?, 30 Days of Autism

It’s Not All About You

Are you a parent of a disabled child? If so, I’m going to need you to forget you’re a parent for the next five minutes or so and just be a person reading a blog. Don’t internalize this until you have finished reading it. Once you have finished, take some deep, relaxing breaths and then repeat these words out loud: it is not about me, it is about my child.

Can you agree to do that? Great, let’s continue…

The next sentence will come as no surprise to anyone who trawls through the various online communities focusing on disabled folks. Tone-policing is a huge issue within the disability community. When reading/hearing disabled people advocating for themselves and their peers, parents & caregivers seem to want to control the manner in which the message is being delivered, rather than giving consideration to the message itself.

Many of these parents/caregivers insist on speaking over the disabled voices; gaslighting, not-like-my-childing, berating, and demanding pity for their frustrations as parents & caregivers, rather than focusing on what could be learned from the adult peers of their children in order to better assist and accommodate those children. So many parents/caregivers would rather build up their egos and put themselves on a pedestal built upon pity and martyrdom, than reflect on the life lessons and experiences of their children’s adult peers.

(Reminder: you’re just someone reading a blog right now.)

Frequently, the non-disabled person will take their ball and go home or – worse – rally fellow parents/caregivers to dump on the person sharing their experiences as a disabled person; something they are electing to share for no reason other than to help the non-disabled learn how to better accommodate the disabled.

If curse words are utilized by a disabled person, the non-curse words are summarily dismissed. If the disabled person challenges a statement made by a parent/caregiver in a civil manner, the challenged party will typically shame the challenger by deploying the walk-in-my-shoes rationale or project feelings of insecurity by other means, neglecting to continue the discussion in a rational manner. If the disabled person comes off as frustrated, they are told not to be so angry and that they’re turning people off to their message.

Think about the last time someone told you that something you experienced wasn’t actually what you know you experienced. Do you remember how hurt you felt? How frustrated you were? How far back into a corner you felt? How invalidated your feelings were? This is how you make disabled advocates feel when you make the conversation about you, rather than them. Did you lash out in your head? With your words? Did you fight back or did you internalize it and move on to avoid further confrontation? Many of us internalize it and move on, but that builds up and when your lived experiences are being shunned with “YEAH, BUT…” statements from parents/caregivers, it eventually evokes assertive and potentially aggressive responses from self-advocates.

Recently, I had a dear friend say something very similar to me, stating you can hold allies accountable, but ripping into well-intended people may make them apathetic to your cause. The friend advised me that advocates should tell allies their efforts are appreciated and then tell them there is an issue with the delivery of the allied advocacy.

My response was this:
Being ripped into is all based on perspective. If someone feels ripped into, that’s on them to deal with… not the person being marginalized and self-advocating. The person advocating really only has a responsibility to accurately present the problem and a solution to that problem. Advocates don’t have to show appreciation or make apologies. That makes the conversation about the person being advocated to, not the person being advocated for.

If an ally (or potential ally) turns away from a “cause” because they feel insulted based on being called out for allying improperly, that’s not the type of ally I’d want around. Forget being weak-willed with regard to allying. Either do or don’t. If an ally’s personal feelings are more important than protecting the person you’re allying… you’re doing it wrong.

Another large problem is parents making meltdowns and other bumps in the road about what they – as parents & caregivers – experience. They vent about their personal frustrations, rather than discussing how to make things easier for the person actually having the meltdown or communication difficulty or whatever seems to be the issue du jour. They treat the symptoms – their vexations with the situation – rather than the cause: their child’s need for accommodations and support. This needs to stop. Behavior is communication; identify why your child is acting the way they are and approach that as the issue to solve.

And before you say, “But Giraffe Party, why is it okay for advocates to be angry and aggressive, but I can’t be? I’m just trying to protect myself/my child!” – stop. You are not the one experiencing life with a disability… you are experiencing life as the parent of a disabled individual. You are not living with a disability, if your child is disabled… you are living with a child – your child – who is disabled.  You are not your child’s voice… you are just the one who can amplify their voice the most. Even if your child is non-verbal, they still have a voice; they are an autonomous being with an individual experience in this world and they can and will communicate that experience in their individual way, however it may be presented.

If parents would step out of their pathologically insular Parent Bubble, they will likely get a good dose of the reality they sorely need to recognize, respect, analyze, and consider as they move forward. Listen to your child’s adult peers. We know what we’re talking about. Disabled advocates have lived through your children’s futures. Ours may not match exactly, but our past is closer to what your child may experience than you’ll ever live and we can provide you with the most valuable insight at no cost  other than your time and your patience. And maybe checking your ego along the way. We, as disabled advocates, do get that you’re not a bad parent and you are trying your best, but we want to help you be better… for your child. It’s not about us. It’s not about you. It’s about your kids.

Remember… deep, relaxing breaths and then repeat these words out loud: it is not about me, it is about my child. 

 

How NOT to Spread Awareness

How NOT to do “autism awareness”:

“Autism is now 1 in 45 in the US. The problem isn’t awareness. The problem is acceptance and lack of prevention. And how will someone with permanent brain injury, self-injurious behavior, leaky gut or completely non-verbal rule the galaxy?”

Do I really need to list all the things wrong with this comment?

1. Autism is estimated to be diagnosed for 1 in 45 children in the US, because we understand more about it and diagnostics criteria has loosened. “Awareness” means that more people are looking for the traits. These numbers are also based on white, eight year old males. If you were to add in adults, people of color, females… the number would grow higher. OMG WE’RE AN EPIDEMIC OF NEURODIVERGENCE!

Cry more, adults who have no idea what the hell autism even is. Your tears cure me. JUST KIDDING.

2. Lack of prevention? The only way to do that is eugenics. Eugenics, as in selective breeding in order to wipe out or promote genetic characteristics… such as being autistic. Eugenics… which Germany promoted back in the early 20th century during a certain period of time when Germany was known for less-than-stellar activities (aka crimes against humanity).

3. Permanent brain injury? We’re not brain-injured.

4. Self-injury? Maybe if you weren’t such a disrespectful jerk when speaking about your kids, they wouldn’t self-injure. Change your behavior and they’ll probably change theirs. Odd how that works.

5. Leaky gut? GTFO with your pseudoscience nonsense.

6. You don’t need to speak to rule the galaxy. My cats don’t speak and they’re in charge of my entire house. I’m partially non-verbal and I’ve held upper-level management positions in large corporations. So…. yeah, about that.

You’re doing acceptance wrong if that’s the sort of ridiculousness you’re going to lay down. That’s the same old negative blahblahblah martyr parents have been trotting out for years. Knock it off.

And if you’re so inclined, you can tell the person who inspired this post what you think here (I am now banned from the page and my comments have been removed).

P.S. Yes, I reported that horrible shirt to Disney for copyright infringement, because as an autistic Star Wars fan, it disgusts me.