Image courtesy of the fabulous organization, Parenting Autistic Children with Love and Acceptance (PACLA)

Why Acceptance Is So Damned Hard

* Image: “Change the world Not your Autistic child” via the awesome Parenting Autistic Children with Love and Acceptance (PACLA).  If you are not familiar with PACLA, get familiar with them!


Forgive my absence, but the end of 2014/ beginning of 2015 has been difficult and I am sure you and I will visit these things over the next year. However, rest assured I am slowly working my way back to all of you. The following post is quite long (you know how I am) and addresses something that has been on my mind for quite some time. And while it’s difficult for me to think on, and possibly controversial to some, I need to talk to you about it. With that, I’m dedicating this piece to my fellow disability rights advocates and activists for your selfless hard work and dedication. I am honored to know you and work along side you…

“We may encounter many defeats but we must not be defeated.”– Dr. Maya Angelou

To support this piece and with the utmost respect, I have included several quotes from Dr. Maya Angelou, a brilliant writer and advocate, whom we sadly lost in 2014.


So… Why Is Acceptance So Damned Hard?

I talk about acceptance all the time. It generally shows up in my posts at least once or twice per, reason being it’s a really big deal to me. And if there’s one thing that’s been made concrete since I started this blog in 2012, it is that some folks don’t like the idea…


Some treat the idea of acceptance as if it’s a bad thing and that parents of Autistic children, and disabled people themselves who advocate for acceptance, have given up. As if acceptance itself is the easy way out and we took it because we didn’t have the backbone to stick it out and fight. I cannot tell you how many times I have witnessed fellow advocates trying to explain that acceptance was an unexpected surprise, a treasure discovered at the end of a long, hard journey, not something they succumbed to or a last resort. So here’s what I’m feeling…

If I want acceptance for myself, as I am, and for my kids as they are then essentially it is believed that I’ve given up.

For those who roll their eyes at my advocacy for acceptance for Autistic (all disabled) people as we are, and for those who verbally attack self-advocates, the parents who advocate for their children, and allies advocating for friends and many times, complete strangers,

Please… Listen.

I’m not finger-pointing, preaching or shaming, because I don’t work that way, and who the hell would listen to me if I did? I believe in educating. But before I can do that I am asking kindly: Please explain why my kids, my friends and I, are shamed for accepting ourselves as we are. For accepting that some things not only can’t be changed, but don’t need to be…

“It is time for parents to teach young people early on that in diversity there is beauty and there is strength.” – Dr. Maya Angelou

I want to know what goes through the mind of someone who tries to tell people they are wrong for loving their imperfect selves, their imperfect children and the countless imperfect people they support in their advocacy,

             Because we’re all imperfect, even the so-called “normal” non-disabled folk.

Acceptance is not the easy road. I have seen more of my friends verbally attacked,  shamed, silenced, laughed at, trolled and bullied merely for loving themselves and their children just as they are, disabilities and all.

Acceptance is the Hard Way

It’s hard because of the misinformation – generally via non-disabled people/sources – out there working against us: Misinformation from helpful organizations who claim they advocate on our behalf, which they do not and I talked about that here; Professionals and educators who in 2015 still adhere to the Medical Model of Disability (the idea that disability is a problem located solely within the person. It focuses on individual deficit and thus sees disability as something to be fixed or cured) The ones who refuse to see anything but deficits, and who refuse to listen to Autistic people and what we have to say. The very same professionals and educators who confidently tell others what we need because we couldn’t possibly know ourselves… because we’re Autistic (*sigh*). You see, most people don’t even know there is another way to see disability. And there is, and it’s brilliant:

Social Model of Disability

The Social Model is based on the idea that disability is socially constructed rather than a part of the person. A distinction is made between impairment and disability with an impairment being any physical, sensory or cognitive limitation. Disability on the other hand is the way society constructs the individual as a problem based on the perceived understanding of impairment. So a person not being able to walk is only made problematic by the fact that we have built a world that is inaccessible to wheelchairs. Therefore disability is the result of the environment rather than something within the individual.  – Both Medical and Social Model definitions via Dr. Gregg D. Beratan

Unfortunately, the Social Model hasn’t yet gained as much attention as it should - we’re working on it - and because of that, the Medical Model assures society that because we are disabled happiness with ourselves just the way we are is an impossibility. I mean, Autistic people can’t be happy and if we are then we are not Autistic enough, (Judy Endow addresses that here). However, if we are considered by non-disabled people to be Autistic enough (Amy Sequenzia nails that here), then we can’t possibly know any better (*sigh*). So many times it seems we face Lose/Lose situations, yet we stand strong in our convictions and continue to advocate. Against all of the:

challenges • obstacles • inaccessibility • discrimination • marginalization • victimization • pity • grief • oppression • prejudice • fear • ignorance…

We Accept Ourselves and Each Other.

Is It Asking So Much?

No, it’s not. Those of us who accept ourselves as we are, are able to do so because we’ve found community, and within that community made up of family, friends and allies, we’ve found acceptance for who we are as human beings. We understand that being disabled doesn’t mean we are “less than” or that we should expect a lesser quality of life than non-disabled people. It seems to elude those who claim that we’ve given up that acceptance for most is an uphill battle…

Given up?

Given up?!!

If one considers advocating, writing, blogging, public speaking, protesting, testifying, educating, tweeting, Facebook(ing) and so on, for hours on end giving up, then I guess… that’s what we’ve done?

Not hardly.

What I wish detractors could see, especially the parents of disabled children, is what we are actually doing. While I am a self-advocate I don’t advocate solely for myself and my kids, but for all disabled people. And I mainly do what I do to educate in the now, to hopefully change minds and alter perceptions so people begin to see beautifully flawed, whole human beings, not living deficits.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” – Dr. Maya Angelou

I’m hoping my advocacy  for acceptance is working for the children, including those whose parents are angered by my advocacy now. For many, their children are young and I’m guessing they haven’t quite wrapped their heads around the idea that one day, their child will be an Autistic adult…And very possibly advocating like we do now. How will these parents feel when their now-grown children want acceptance? When all of the therapies didn’t change them (or worse… Did) and they’re just as Autistic as they were on the day they were born. And, by their standards, maybe some of the therapy worked and their children appear less autistic, or maybe therapies didn’t work. Either way let’s say these young adults have decided they want to be accepted as they are. What if they want to become advocates? What if they have found a community that accepts them and has helped them love who they are (that’s how it happened for me), and are no longer willing to “pass?” They might even advocate against therapies designed to make them look less autistic. It happens. Many of the young adults I advocate with are doing that very thing. So then what?

So then their children will be where I and other disabled people are now:

Advocating for acceptance and inclusion in society, and being reprimanded and bullied for their advocacy by the same type of parents who will tell them again and again that they don’t know what they’re talking about. That they don’t know how hard it is…

Like what we advocates are experiencing now.

I have a couple questions for those who try to silence us and disregard our advocacy:

  1. How will you feel when you see your child being silenced by others as if what they say doesn’t matter?
  2. How will you feel when your child, speaking (typing, signing) from personal experience and wanting to educate, is told he or she can’t possibly know what they’re talking about? 

That’s the one that really gets to me: Anyone that would purport to tell a disabled person that, in regards to disabilities, they don’t know what they’re talking about.

Acceptance means giving up?

Again… Not hardly.

Out of Love

I don’t for one second believe all of these folks are purposefully undermining our advocacy. Just as I don’t believe there is always malicious intent (trolling not included). I believe many are frightened. Like the rest of us, they love their children so very much and they fear for their futures and want to protect them…

I’m there. I get it.

But we have a choice to make. We can jump on the Medical Model freight train and treat our children as if they’re broken as we robotically nod our heads and do what we’re told by professionals focused on fixes rather than our children. And we can do this without question, bending and forcing them into a mold they can’t possibly fit, never once questioning what it is they want.  And as we do this, we can watch as our words and actions, work to undermine our children making them believe they are broken and eliminating any possibility of success through their own self-determination.  Or we can advocate for acceptance and nothing less…

Nothing will protect our children better than a society that accepts them for who they are.

Advocacy Kicks Ass

Please tell me, are people under the impression that I want to be at my laptop blogging away, asking again and again for my children to be seen as whole? To please, please see that my kids, too, can be productive members of society if they’re included? Every parent’s dream, right?

Blogging is great and advocacy kicks ass and I’d be lying if I said I didn’t love both.

My topic of choice, at times, leaves much to be desired and not because it’s not worthy. Disability rights activism is awesome but you see, my job in essence is to reach out to human beings and ask them to accept other human beings who, through mainstream media, unreliable reporting and fear-mongering  are found to be unacceptable. I have friends, people I have grown to know and love, called “less than human” because they are disabled. So while I love advocating, and have committed a good portion of my life to it, there’s this little voice inside I try to talk over that whispers a painful truth:

Advocating for acceptance hurts, and… It. Is. HARD.

It hurts to think (know) for instance that because my kids are disabled, I have to ask society to include them while their non-disabled peers are accepted automatically. I’m basically asked to prove that my kids count. We have been taught through segregation, seclusion and self-contained classrooms that our children are not equal.

“Prejudice is a burden that confuses the past, threatens the future and renders the present inaccessible.” – Dr. Maya Angelou

We have been taught that disabled people are miserable, unfortunate individuals that want and need our pity. I know I grew up thinking those things and talked about it here and here. Because of these things, I don’t believe that all of the parents I see fighting acceptance or trying to silence our advocacy efforts are doing it out of hate, they’re doing it because they don’t know, just like I didn’t.

They don’t understand that when they walk for cures, or open their wallets to finance autism prevention, they are actually advocating AGAINST their very own children.

The very organizations they hand their hard-earned money over to, and that are supposed to be advocating for us (the ones that take money from the disabled community to finance their mission, which seems to focus on eradicating our neurology) are working against disabled people. And they prey upon frightened, well-meaning parents, depending on them to help finance it. They take our neurology and use it to fund research for elimination of our people.

Parents are told by professionals to fight their children’s neurology, scared into employing as many early interventions, trainings and therapies as possible to “fix” their children. Then large charitable organizations swoop in and support these parents by fueling their fears…

So we fight for acceptance against the tidal wave of ignorance that works to drown out our advocacy by telling society we are less than they.

Acceptance as a Road to Peace

It really can be and many of us have found it. We have found the love in acceptance and through that acceptance, peace. It’s why we continue to advocate even as others tear us down. So, can I ask you to think on it? Please? Can I ask you to consider that acceptance just might be a way to find your peace? Will you be strong and stand against those who say your child is less? Will you join us not only for your child, but also for the children of parents who aren’t strong enough yet, because I truly believe one day they will be…

Acceptance takes time,

It’s an uphill battle

And it’s hard.

And your child, every child, deserves it.

* * * * *

Awesome organizations that support Acceptance:

ASAN (Autistic Self-Advocacy Network)

AWN (Autism Women’s Network)

Boycott Autism Speaks


Parenting Autistic Children with Love and Acceptance (PACLA)


Learning to be Autistic

Philly Pride

“Autism Pride” sidewalk art courtesy of Leah Kelley of Thirty Days of Autism and Bella while we were in Philly last Spring! 

Learning to be Autistic

That sounds funny, doesn’t it? I hear all the time about people learning to NOT be Autistic (i.e. being forced through therapies to not “behave” autistically). I’ve yet to hear about anyone actually wanting to learn how to be Autistic. 

So what does it mean?

Last week my friend Cynthia who blogs over at Musings of an Aspie wrote a great piece, At the Intersection of Gender and Autism – Part I. I read it and found myself nodding in agreement through much of the post, especially at this:

“Knowing that I’m autistic has helped me to reconcile so many confusing aspects of my life. It’s as if I’m slowly reassembling the pieces of myself.”  –  Cynthia Kim

I tweeted Cynthia’s post and got this response from a Twitter follower: “This is brilliant, esp about learning to be autistic. Well written.” At first I wasn’t sure how to take it: “…learning to be Autistic”? Was she being sarcastic? She did add the “Well written” part, so I didn’t think so, but responses on social media can be confusing to me and I’m not always sure how to take them. I thought on it for a bit and I realized what I believe she was trying to say or at least what I came away with, and that was this… We spend our entire lives masking, passing, faking, essentially trying to act neurotypically so that by the time we are diagnosed in our late 30s, early 40s, we have to learn (re-learn) how to be Autistic. In essence…

We have to learn how to be ourselves.

I wanted to hug Cynthia after I read her post and I wanted to hug the woman for her response. Yes! Learning (re-learning)! They’re right! I thought to myself. We have to learn how to be who we truly are, not the person we forced ourselves - or were forced by others - to become so we could pass:

  • Hiding our stims
  • Forcing ourselves to make eye-contact
  • Joining the crowd and enduring parties, sleepovers and other social-gatherings
  • Mimicking others so we knew how to “act right”
  • Hiding our depression behind a well-practiced smile
  • Silently berating ourselves for not fitting in – even if it seemed to others that we did
  • Psychologically abusing ourselves for perceived social, familial and relationship failures
  • Hiding our Self-Injurious Behavior (SIB) – and oh how easily we hid them
  • Eating disorders to try and gain control over some part of our lives because everything else seemed out of control
  • Obsessive Compulsive Disorder (OCD)
  • Hiding meltdowns whenever possible

I self-diagnosed six years ago at 37 and was professionally diagnosed at 39, two years later. J mentioned to me around that time that I acted more autistic than I used to. He questioned whether or not it was because of the diagnosis itself. The answer sprang to mind immediately…

No, I’m not being more autistic now, I’m just not acting neurotypical any longer.

I stim openly, and I may look away from people while they speak and I will script without worry with my kids. I rarely go to social events but no longer feel that nagging guilt when I decline. I don’t beat myself up for not fitting in everywhere because I’ve found a community where I’m always welcome as I am.

So You’re Okay being “Out There”

I am. And that’s a difficult concept for many to comprehend. Why, if I have been passing for so long, would I want to put myself out there for prejudice and discrimination as a disabled person? Wouldn’t it be better to continue hiding who I really am, at least while I’m out in public? NO. Because any abelist comments I endure from ignorant people merely for being myself can’t compare to the…

self-hate • pain • shame • embarrassment • guilt • SIB • frustration • anger • confusion • meltdowns • depression • stress • OCD • self-abuse • eating disorders • feelings of failure and inadequacy

…that I endured for years trying to pass. I learned the hard way after several decades that I would rather love me than please others.

 Disability Pride… Are You Serious?

Oh, hell yes! Disability pride is another reason I don’t pass, and that decision has been strengthened and supported since day one by finally finding and joining the online disabled community. My kids are growing up knowing that they are autistic, what that means to them as well as to how the majority of society perceives them (quite negatively) and why, which I talked about here and here. Our focus is on their strengths, where they excel, so they can take pride in themselves and their accomplishments.

Do we gloss over the difficulties? Absolutely not, we live those, too, every single day.

So we talk about challenges and areas of difficulty, we don’t ignore them, and we figure out what we can do to either strengthen ourselves in those areas, or how to work around them when we can’t. My children do not feel a need to pass and are learning to advocate and ask for accommodations when they need them – not making the mistake of pretending to have everything under control like I did. They speak of disabilities very openly because it’s a part of who they are. They are being taught the Social Model of Disability and how it’s our environment along with people’s attitudes towards disability that disable us. While there are challenges and obstacles, they are not insurmountable. They do not render us incapable, they make us have to figure out other ways to do things so we can be successful. That’s not being incapable, that’s being adaptable. We will figure out how to make things work because, honestly, we don’t have a choice.

Unlike me when I was growing up, my kids don’t feel the need to hide who they are.

I hope they never do, which is why we keep the conversation going. I’m hoping what they learn in childhood will carry over into adulthood. And that it will continue to strengthen their disability pride, and support their decision to not hide their disabilities.


We have a choice to make… Either we continue to try and pass, and teach our children to do the same, putting them in therapy after therapy so they can “act right,” teaching them by our actions that disability is a bad thing and that we don’t accept them as they are,

And then let them deal with the consequences when they’re older, like many of my friends and I have.

Or we can love them unconditionally, every single bit of them, and teach them about themselves with disability pride: Our children are not broken, they do not need to be fixed. And while we’re at it we must educate them about the wall of societal hate and fear they are up against. That information we cannot keep from them because if they haven’t already encountered it, they will. And it shouldn’t be a story of gloom and doom – don’t scare them! – be honest but allow the conversation to grow and mature as your children do. However you approach it, it’s still a part of the conversation that needs to be addressed so they are able to handle ableism when they encounter it, like my children have.

Life is a work in progress. It’s not easy, we’re not always going to get it right and we’re going to make mistakes again and again. Learning from those mistakes and not making the same ones twice, talking to our kids about successes as well as the things we failed at and why we failed, is a big part of our education and theirs. That is why I am teaching my kids to love themselves as they are, to accept that there are things they will do with ease, and others they’ll not be able to do at all (you know, like every other human being).

When we talk about autism acceptance we usually see passing as a fail.

So Then is Passing Always a Fail?

No, it’s not. Times are changing, acceptance and inclusion, and disability rights as a whole are garnering more attention through major social media outlets. But we’re not “there” yet.  I have friends who continue to pass as non-autistic because of incidences of bullying and job discrimination, and I support them in their decision. I get it, do you? Do you understand why some of our fellow Autists choose to pass? It’s not because they have a problem with being Autistic, or they hate who they are. Far from it. It’s because they fear loss of income or abuse for being themselves. For them…

Passing isn’t about embarrassment or shame, it’s about survival.

While advocates continually chink away at the ignorance surrounding disability, we continue to teach our children that there is no reason to act or pretend to be something they’re not. Will they ever have to pass to get or keep a job? I have no idea, but I truly hope not, it’s why we continue to advocate for acceptance. Speaking in a non-survival context, the need to pass generally serves to make non-disabled people feel more comfortable around us, nothing more. What I tell my kids is this: “You are loved and appreciated, and whole just as you are, and when ignorance rears its ugly head, the person making the ableist comment is the one with the problem, not you.”

My hope for my kids is that they never have to re-learn how to be Autistic because they will have always been cool  BEING  Autistic.


Advocacy in HER Words


I’m not the type of person who claims to be right all the time (or even half the time), nor do I brag about my accomplishments. Knowing I’m right about something is good enough for me, no need to announce it. However, there are exceptions to most rules, and today it is with much pleasure and an overflowing heart that I must shout to all of you…


I talked to you over the last couple months about a few things that are very near and dear to me:

My kids   •   Advocacy  •  Acceptance   •   Disability Pride

Actually, I suppose I’ve been talking on those things for almost 2 years now – where does the time go?? – and I always find myself wondering if I’m getting through. Not that anything negative has happened, it’s just that blogging can be difficult because comments are rare so you can spend time wondering: is anyone listening? This isn’t a lecture, no way, not from me. Honestly, I read many blogs that I absolutely love and rarely comment, so I understand and am not offended. However, to counter my feelings of “anybody-out-there?”, something was shared with me the other day, something so powerful that the author of the piece was slightly stunned at my silent tears – I’m not a big crier. Prior to reading the piece, I promised her I wouldn’t comment because, like me, she has a difficult time accepting praise. But the piece she wrote was to me: art, music, poetry… beauty embodied. Because of what I read, I came to a realization…

. . . talking about advocacy and disability rights even when you don’t have a platform or a large audience matters because people are listening.

That’s pretty intense, right: Beauty embodied? What the heck could possibly meet that standard? Well, I’m going to share it with you but first I’m going to tell you why I was right. The last piece I published, Eight… The Magic Number is Eight needs to be read before you continue for this piece to make sense. So please do so, I’ll wait.

*** waiting ***

Great, let’s continue. So you’ll remember in that piece I said this:

” Conversations become more detailed and more questions will be asked as they get older, and these conversations should involve siblings, too! Until they’re able to advocate for themselves, their siblings are their strongest allies! “

This is the part where I get to be right and shout it from the mountain tops…

Below is a piece written by my 14 year-old daughter, Bella, well before I even wrote “Eight…” For those of you who don’t follow this blog, Bella is brilliant. Seriously, I’m not “Momming” up that descriptor. Straight A(s) / A+(s) in every subject. She has already skipped one grade, she’s in 10th now taking AP courses and will be starting pre-Calculus this Spring. Her chemistry teacher asked her after the first day of class if she just wanted to go ahead and take APChemistry instead, and she has been given the green light by her Spanish teacher to go ahead on her own because she was so far ahead of the other Spanish classes she had nothing to do. She is in the 3rd year of a neuroscience mentorship at the College of William & Mary, observes a 400s Level PsychPharm course at the College, and currently wants to be a brain surgeon. She is an autodidact and is teaching herself computer coding (with ease), Japanese and French, is an avid and hyperlexic reader (adores Manga and Stephen King). She’s a self-proclaimed geek, loves technology and is an awesome gamer -- she kicks you know what at video games (Titanfall being one of her favs).

I wonder what it would be like if she put all that hard work and effort into not leaving her shoes all over the house or possibly putting her dishes away… Oh the possibilities!

Kidding aside, Bella is a self-motivated and seriously hard worker but her success comes with the price of little sleep, because her brain rarely allows her to rest and it also doesn’t allow her to easily connect with peers.  It’s a blessing then, academics and work ethic aside, that Bella is not one for the social aspects of life. She is a very solitary soul and shuns socialization whenever possible because for her it tends to be wrought with a lot of frustration, anxiety and overstimulation. She spends most of her time outside of school, happily alone. One of her favorite past times besides research is watching YouTubers: Feminists, Disability and LGBTQIA Rights Activists and Minecraft experts (Shout out to Leah Kelley’s awesome H <3 )! By the way, did I happen to mention…

Bella is proudly AUTISTIC

( Look, I snuck in more disability pride! )

Ok, here’s where I get to the point of this post…

Bella was asked to write a piece for school about someone she admires: celebrity, historical figure, fictional figure, etc… It could be anyone in the world, real or fictitious, the sky’s the limit. When she mentioned the assignment to me I hadn’t the slightest idea who she would choose: Mr. Spock, Hayao Miyazaki, the 10th Doctor (from the show, Doctor Who), Sherlock (Cumberbatch’s version), one of her YouTubers… Who? WHO?!! The suspense was killing me! Who out of billions of people (fictional characters not included) would my daughter choose to write about? Who could possibly meet her standards of excellence? As always, she surprised me. Not in the choice itself because I loved her choice, but in the fact that this 14 year-old could write about “L” from Death Note (an old Manga crush), Stephen Hawking, Stephen King, or Lizzie Velasquez to name a very few of the people she finds excellent. But she didn’t, she chose to write…


“A Bit About my Brother

When I was about two or three, I was a little bit strange.

I didn’t have any real friends and was the kid that mainly stayed in my room and had conversations with my four walls.

My parents decided that for my own mental stability, a sibling would be a good idea. My brother was born on March 17th, 2003, and he wasn’t very interesting at first. Then, as he started developing, I noticed he was different. He was perfect. He grew perfect brown hair, had perfect brown eyes, and was the best sibling I could ask for. We would sit in the same room (at opposite sides, of course) and read books for hours.

I wouldn’t talk to him, and he wouldn’t talk to me; it was the ideal relationship.

I remember teaching him how to play video games, and him teaching me computer commands. Now I can say I’m pretty good at using a computer. I also remember how he was the buffer for my anger, specifically my irritation. I remember one time I could not pass a stage in the Barbie and the Magic of Pegasus video game on my Gameboy Advance (SP), and in all my rage, I pushed my brother down. He only seemed mildly irritated at first but walked it off, making me still feel bad even eight years later. I can still say that even now he is by far one of the coolest little brothers I’ve ever seen. Not only is he wickedly intelligent, but he’s pretty modest too.

Sometimes I wish other people could see my brother as I do and see how much he really is worth.

Yeah, he doesn’t talk, but imagine if he did! He would be too busy nagging at me, and would stop being as awesome as he is! I hope Bas never changes, and I hope he stays the intelligent, humble, slightly crazy, and totally awesome self that he is. “



I don’t want to take away from the beauty, so I’ll end quietly by saying (again):

 “I’m tearing up now as I consider my three excellent kids. All three already advocating… And I am speechless. And I am proud. And I am honored to be their Mom.”




“EIGHT… THE MAGIC NUMBER IS EIGHT” S.R. Salas post for @squagdotcom


The following post was written especially for Squag

What Is Squag?

“SquagTM [skwag] is a curated, online experience for kids on the autism spectrum (and their siblings!) that allows them to initiate, explore, and self-discover. Our SquagpadsTM give parents an opportunity to learn about their kids and give kids a new way to learn about themselves, making screen time more meaningful.”

* * * * * * * * * * * * *

The Burning Question

The question I am asked time and again: At what age do we talk to our kids about disabilities? And more specifically: At what age do we tell our children they are Autistic? For me the answer to either or both is…

as soon as possible.

Why wouldn’t we, unless we’re trying to keep something from them, which I talked about here.We want our children to know themselves, don’t we? And that’s not something that can start too soon. We begin teaching our children about themselves from the very beginning. We teach them about their bodies, we talk to them about eye and hair and skin color. We talk to them about family and friends, relationships, their feelings and emotions, so why not about their disabilities? They are a part of them.

If we want our kids to have a clear understanding about themselves we should tell them all about who they are, right?

Unless one considers disabilities something that should be hidden. We’ve talked about autism in our family since we realized our children (and I) were Autistic. As they’ve grown, we’ve also been met with auditory processing issues, physical disabilities, learning disabilities, Attention Deficit Disorder (ADD) and more. These things need to be addressed. It’s important to me that my daughter know that she has difficulty in school, not because she’s “dumb,” which is what she thought very early on, but because her “brain works differently,” which is what she told a classmate more recently…

Yessss! She nailed it!!


Early Disabilities Education At Work

The other night we attended an ice cream social for Lexi’s, school, which was held at a local public playground. We’ve been going every year for about 9 years now, and it’s pretty much the same year in and year out: Parents and teachers talking, children running, swinging, climbing and shouting…

I find it a bit overstimulating, but the kids seem to like it.

After a couple of hours, as it began to grow dark, it was time to go. My kids seemed to have a good time and discussed animatedly where we could go for a late dinner. As we walked toward our truck, Lexi became quiet and hung back, taking my adult-sized hand in her tiny 8 year-old hand (I forget how small she is sometimes). She then asked me to walk with her so we could speak in private. So we slowed up letting the others walk ahead, and as I looked down at her I watched the tears begin to fall. Like me she has sensory integration impairments and is hypersensitive to most stimuli, and most likely an empath as well, so tears from her are not uncommon.

“What is it?” I ask, sure she is having a bit of a meltdown from all of the overstimulation from the evening.

*She shakes her head unable to speak.

“Would you like to tell me later?”

*She shakes her head again.

“When you’re ready to talk, just let me know.” This is usual for her as it takes time for her to process information and to make sense of most social situations.

“They laughed at Bas,” she says finally.

*I feel sick

“Because he couldn’t talk they laughed at him!”

*And the tears fall harder. I swallow mine because now is not the time to be hurt by ignorance and bullying and the unfairness, and the other stuff that can go along with being disabled.

“Who?” I asked.

“Two boys. I asked them how old they were and they said they were in the 4th grade (Lexi is in 3rd). And I told them ‘He’s Autistic and he can’t talk!’ And the one boy said ‘sorry’ but the other boy kept laughing, then they ran off.”

*And she cries some more then asks me not to say anything to the rest of the family. She has difficulty with her emotions and becomes overwhelmed easily, usually only sharing them with me.

“I won’t tell,” I promise.

A bit later as we sat down to dinner at the restaurant, a seafood place that has become a family favorite, Lexi, still unable to engage with the rest of the family asked me to share what had happened. So I did. And do you know what the first thing I heard was?

“Yea, I remember the first time that happened with me and Bas,”  from my 14 year-old daughter, Bella.

I gulped the tears back on that one, too: “I remember the first time…”  I’m tearing up now as I consider my three excellent kids. All three already advocating…

And I am speechless.   And I am proud.   And I am honored to be their Mom.

 I’m thinking of a post I wrote quite some time ago, The Magic Number. And after re-reading that post, I was left with this…

Eight… The Magic Number is Eight


The Sooner The Better

And that’s why we talk about it early. Keep it simple at first. Conversations become more detailed and more questions will be asked as they get older, and these conversations should involve siblings, too! Until they’re able to advocate for themselves, their siblings are their strongest allies! Never underestimate the lessons kids learn from each other…

Even on a playground.

Self-perceptions begin to form at such a young age and if we don’t give our kids all the information because we think they’re too young, or that they won’t figure it out if we don’t tell them, then we’re doing them a disservice. They will find out if they haven’t already, and by not talking about it we run the risk of them trying to hide these things from us…

If we don’t talk openly with our kids, we run the risk of them feeling embarrassment or shame about a part of themselves, and it’s up to us as parents to do what we can to keep that from happening.

We have to learn to accept these things about our kids – their differences, it’s what makes them unique – and help them to love and accept themselves completely. Are there obstacles? Challenges? Holy cow, yes! And that’s why the conversations can’t start soon enough. Education is key, the more our kids know the better they are able to handle situations as they arise.


Advocacy In All Of Its Awesomeness

Eight? Isn’t that a bit young? I don’t like to think myself naïve, and I know I miss a lot of the social stuff, but eight? Really?! Ugh. I guess it’s not too young considering Bella was around that age when she first encountered prejudice against her little brother. So, how old was he? Bas is 11 now and still non-speaking. He’s never mentioned anything to me, but I have to wonder… What does he think?

What was going through his mind that evening when those boys were laughing at him?

Was he hurt? Did he care? Bas was not left out of the conversation (nothing about him without him). I talked to him that evening at bedtime. I told him those boys were wrong and that I was proud of him and his sister. He seemed happy as usual and not upset by any of it and I’ll take that as a positive, but right now I have no way of knowing for sure and I hate that. But there is one thing I do know, and more importantly that I know he knows:

Two times (at least) when kids were bullying him, laughing and making fun of him, his two sisters, whom he adores, stood up for him.

And they are wondrous and I am in awe of them, and do you know why? I never once asked or told either of them to do what they did. To advocate for their brother when others bullied him. They did that on their own.

They were both witness to ignorance and hate and they each made the choice to speak out.


In Retrospect

Do I still feel that discussing autism as soon as possible is the right thing? Without question. Discussing disabilities shouldn’t be a negative thing and if you think it is, please check out my blogroll and read about…

Autism Acceptance and Disability Pride.

I also wrote a teaser of sorts for an excellent book on the subject of disability pride Criptiques , which is a collection of essays by disabled writers. And while we’re on the topic, take the time to learn about the Social Model of Disability and why it’s well past time it replace the Medical Model of Disability with its outdated notions and disrespectful views of disabled people.

Advocacy is not always a conscious decision. Personally, I was advocating for my kids for years and had no idea, I was just doing what was necessary to help them be successful. And I’ve encountered the same in others. I’ve had people tell me they choose not to advocate, that they just can’t do it, and didn’t realize that any time they had asked for the smallest accommodation for themselves or someone else, or maybe told a couple of bullies that they need to lay off, that they have in fact advocated. You don’t have to protest, or march, or blog, or testify at the capitol (but it’s AWESOME if you can) to advocate. You could do something as seemingly small as educating two little boys on a playground like my 8 year-old daughter did…

 . . . And the ripples of your advocacy could be felt by thousands.




PRESS RELEASE: Disability Visibility Project @DisVisibility

I am so happy to be named the 60th Media Partner of the Disability Visibility Project! If you haven’t heard of it (yet) you must check it out ASAP! Below is a press release and I ask that you please join me in spreading the news far and wide. This is an amazing project dedicated to…“Recording Disability History, One Story at a Time.” 

* * * * * * * 



Disability Visibility Project to Record Stories for the 25th Anniversary of the Americans with Disabilities Act

Preserving the Stories of People with Disabilities

SAN FRANCISCOJuly 25, 2014 — The Disability Visibility Project is a yearlong grassroots campaign to document the stories of people with disabilities in celebration of the upcoming 25th anniversary of the Americans with Disabilities Act (ADA) in 2015.

In partnership with StoryCorps, the national oral history organization, Disability Visibility Project encourages people to record and archive their unique and powerful stories at StoryCorps’ recording studios in AtlantaChicagoSan Francisco and in StoryCorps’ mobile recording booth that travels from city to city throughout the United States.

StoryCorps interviews are conducted between two people who know and care about each other. A trained facilitator guides the participants through the interview process. At the end of each 40-minute recording session, participants receive a copy of their interview. With their permission, a second copy is archived at the American Folklife Center at the Library of Congress.

Participants can to make reservations online with StoryCorps and mention the Disability Visibility Project in the “NOTES” section of the online form so their story will be tagged for this project. Check StoryCorps’ website for more information on how to participate:

“The Americans with Disabilities Act was a landmark civil rights law that prohibited discrimination based on disability and provided equal opportunity for millions to participate in society. As we celebrate the 24th anniversary of the ADA tomorrow, we are taking this opportunity to remember and reflect as a community on the tremendous changes we’ve experienced so far,” says Alice Wong, Project Coordinator. “The struggle for disability and human rights continues and it is important for future generations to have this history to guide them.”

About Disability Visibility Project
The project partners with individuals and organizations to reach diverse groups within the disability community. “We believe all people are historic figures with stories that are worth sharing and preserving,” says Wong.

For more information:

Twitter: @DisVisibility

About StoryCorps
StoryCorps’ mission is to provide people of all backgrounds and beliefs with the opportunity to record, preserve, and share their stories. Each week, millions listen to StoryCorps’ award winning broadcasts on NPR’s Morning Edition.

For more information:

Twitter: @storycorps

Photo –

Media Contact:

Alice Wong, Project Coordinator
Disability Visibility Project

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On Being An Empath

Conscious v. Subconscious

I’d like to apologize for not being here like I (had hoped to? promised myself I would be?). Sometimes it’s hard to just “be,” you know? Alanis Morrissette said: “Life has a funny way of sneaking up on you…” And it does, doesn’t it? I’ve spent the last few years in a limbo of sorts. I was caught between focusing so hard on the details of my life that I was missing the big picture, but at the same time I was trying to not look to closely because I knew if I did I wouldn’t like what I saw, and…

 Life snuck up on me.



Unfeeling, Unemotive and Unreachably Autistic

While I do my best to stick to the positive and speak to people as respectively as possible…

 Bite me.

Sincerely. Anyone who ever told me how cold, unfeeling, callous and hateful I was because I did not “act right,” or react the way I was “supposed to” in certain situations, or because my emotions weren’t displayed in a socially acceptable way or because my expected actions didn’t quite fit the norm

Seriously… Bite me.

And for the rest of you, please forgive me for that. I don’t complain here often and you will rarely, if ever, find me bitter. It’s just that I spent a life time (it seems) masking my emotions, hiding my feelings and passing as non-Autistic and it was hard. But you know what? As I sit here talking with you now, I find I’m feeling quite bitter. You see, this last time I caught life sneaking up on me I learned a lot of things: Where my psychological self-abuse and constant feelings of guilt came from, and my eating disorder, my depression, and… other things.  So very much of it I’m grateful to know, all of it actually because it all added to that lifelong goal of getting-to-know-myself. However like many of life’s discoveries there’s been…

 “the bittersweet between my teeth.”- Young Blood by The Naked and Famous

Not including family and friends, if you follow me here or on Twitter (@srsalas13, please excuse the prolonged absence as I continue to decompress) you will know that I care a hell of a lot about people. And I truly care. I do. I have spent many late nights, sometimes sleeping only three hours at a time because I advocate not only with people here in the States, but with people all over the world. Advocacy does not sleep and it does not wait for me to sleep and in case you were wondering, it doesn’t pay either – not a dime. But that’s not what this is about. This is…

I care. A lot.

The people I advocate for or with, they all matter. They are human beings with lives each just as important as the next. And I care, god help me I care so much sometimes it hurts so desperately I want it all to stop. I want to cover my ears and close my eyes and make it all go away because the pain is too great: The pain in the anger, the joy, the sadness and the excitement of it all. It amazes me sometimes how the images and actions stay so fresh in my mind and I can’t get away from them.

 Heartless?  Unfeeling?  Me?


It hurts to think that people used to believe that of me because I didn’t respond fast enough or in the right way. It hurts because after hearing it for so long, I believed what they said about me. And I was so confused and afraid for so long, that is the person I tried to be. By the time I was professionally diagnosed as Autistic, I felt I had met all the requirements. Because of my numbness and unwillingness to let people in, I had earned my diagnosis.

 Autism MYTH No.1:

Autistic people have little/no feelings or emotions, sympathy or empathy because we are incapable.

I read that bullshit (excuse that one, too, please) in a few places years ago and I believed it. Of course it wasn’t written by Autistic people, but by some “experts” (using that term very loosely and with much sarcasm) that obviously didn’t know a thing about Autistic people.


Numbness Set In

So why would I believe such a thing about myself? Why would I think that I had little or no empathy? Well, it seemed people didn’t matter much to me (except for my kids). I found I could spend very little time with them without being frustrated and exhausted. I didn’t want to hear their problems. I didn’t want to hear their joy or sorrow. As a matter of fact…

I didn’t want to hear anything.

So I stopped. I began to tell myself that their words didn’t hurt me and that people didn’t matter, that their problems and issues were insignificant just like mine. Each person was only one person and there is a world full of hurt and pain and anger and who did they think they were complaining about themselves when we have global crises of monumental proportions?! Yeah, I was in that place…

So I shut down.

I chose not to feel. I became numb. Sound impossible? I can assure you it’s not. From about 2007 – 2011 that’s where I was and I talked about that here. The decision to shut down, to disconnect from society was an easy one and carried out with no feelings of loss or isolation. Quite the opposite, it was the best I’d felt in years. Was it so unusual to prefer numbness to the barrage of feelings and emotions I absorbed in an almost osmotic fashion from everyone I came into contact with, their feelings bleeding all over me like an attack on my nervous system. Suffocating. Mr. Spock said it perfectly…

“…you mistake my choice not to feel as a reflection of my not caring. Well, I assure you, the truth is precisely the opposite.” - Star Trek: Into Darkness, 2013

Yes! Like that! Exactly! When you feel so deeply sometimes you have to turn it off because it’s too much for the human heart (soul?) to bear. That was me as a child and as I grew the feelings I experienced with others, not together as a “we” but separately from them as a they, were so strong they could be painful. Even their joy hurt me as I became excited and stressed to the point of bursting. My friend Ariane Zurcher, who blogs over at Emmas Hope Book, wrote a piece on The Intense World Theory that addresses the issue of hypersensitivity:

“The Intense World Theory for Autism states autism is the result of a “super charged brain.”  Feelings, visual, auditory and tactile sensations are felt so intensely they are painful.  These intense feelings, coupled with extreme pain memory causes the child to become overwhelmed and shut down, withdrawing from stimulus.” – A.Z.

Many times my reactions to another person’s emotions were wrong it seems. I responded inappropriately because when nervous and stressed, which was how I’d spent a good portion of my life, that’s what my central nervous system chose as a reaction (e.g. I smiled throughout my grandfather’s funeral). Was I happy? Absolutely not, and I truly had no desire to react in that manner, but my brain – my body – did not want to feel the pain of loss, so it chose… joy?? In other situations, a person’s joy or pain was met with my flat affect.

And I felt for them, sometimes so deeply it was “attacking” my insides, but it didn’t show on my face.

Why? There are many reasons the main one being I didn’t realize my face wasn’t mirroring my feelings. At other times, and on a more conscious level, I wasn’t sure how to appropriately express myself and was afraid to try, or maybe I missed a social cue or misread body language, which to everyone but me screamed,

“Hey! This really hurts could I get a hug??”

But I didn’t get that. So I gave people what I would want in my time of need: personal space. I left them alone and it seems that was the wrong thing to do earning me the title of uncaring. But no one ever explained that to me. As a matter of fact no one explained much to me in regards to feelings and emotions – I know, I know, I was supposed to just “get” that stuff – and I’ll honestly say that while I saw people’s reactions to things, I never quite understood them. They were too emotional, over-reactive and seemed to wear their feelings on their sleeves. I’ve always been incredibly private and the mere thought of someone reading my face and knowing my innermost thoughts was scary (this is how eye contact can feel to me, too). I mistook other’s behavior because it was different, just as they mistook mine. But there were more of them than me. I don’t remember meeting another Autistic person until I was an adult, I’m sure I did and would guess they were most likely hiding in plain sight just as I was.

So basically I was confused, angry and worst of all surrounded.


And I had no idea what was going to happen.

As I got older I began to numb myself. I, like Mr. Spock, chose not to feel. And it worked! So well in fact that I worked to become those awful things some people said about me. Because they were right, weren’t they? Why would people who supposedly knew me and cared for me say those things if they weren’t true? Because they didn’t understand me, hell, I didn’t understand me. I did the best that I could with absolutely no support and no guidance. Those that called me heartless, callous, unfeeling?

They didn’t really know me. And you know what, they were wrong. THEY were wrong.

Not me.

I missed a lot and tended to misunderstand what I didn’t miss. So maybe I picked up certain obnoxious habits like sarcasm to hide my slower processing time. Anything to draw attention from my inability to process auditory information, or the fact that I couldn’t read between the lines or that I didn’t get the joke that I was the butt of.

All of these things combined to create an unpredictable world and add to my constant feelings of fear and dread.

Numbness when it finally came was a gift. A respite from feeling badly about myself day in and day out and not knowing why I was feeling that way. It took me many years and some very kind people to make me realize those people had been wrong. In addition, there was an important fact right in front of me for over a decade and I never saw it. I said it once already did you catch it?

“Well, because people didn’t matter much to me (except for my kids).”

Except. For. My. Kids.

Hard to claim you’re completely numb and that people don’t matter when you are blessed with three living, breathing, beautiful human beings, whom the sun rises and sets on for you and whose every joy and hurt is your own. Looking back, I was afraid. Afraid to do and say the wrong thing, to be laughed at, to hurt someone’s feelings to completely ruin a relationship over my inability to get it right. All those years ago I took the easy way out. I let social norms dictate who I was and how I acted and when I had had enough of their estimation of me I shut down. I chose not to feel.


Here And Now

It’s taken three years and many new, wonderful and loving friends to realize that I am a good person: I. Am. Good. And I always was. In a recent session, T, my therapist said off-handedly…

“You’re an empath.”

I thought it was her turn to lie down on the couch. An empath? Me? If you’re not sure what an empath is, here’s a quick definition from the Urban Dictionary:

A person who is capable of feeling the emotions of others despite the fact that they themselves are not going through the same situation.

I was so surprised at her assessment, and she said it so matter-of-factly that I shared it with friends, and do you know what they said?

“Well, yeah, of course you are. Didn’t you know?”


No, I didn’t because even though I’ve come to many very positive realizations about myself and have had many new experiences that have taught me otherwise, I still have a good three decades of “you are awful” to contend with. And let’s not forget that lovely little tidbit from Autism 101 written and approved by non-Autistic “experts,” which I bitterly repeat:

Autism MYTH No.1:

Autistic people have little/no feelings or emotions, sympathy or empathy because we are incapable.


I Am An Empath… Again

Of course I never stopped being an empath I was merely ignoring whoever or whatever I could get away with because it was my only defense. I never truly stopped feeling although I had the floodgates locked tight. So when I say I feel again what I mean is I am feeling differently and this time on my terms and in my own way, and with respect to myself as well as the people I am interacting with.

People… You must stop expecting us to react or respond in non-Autistic fashion.

It’s unnatural, and understand that if we do you’re merely seeing what we think we’re supposed to show you (think social skills training) and not how we really feel. For me, I handle social situations in the best way that I can and hope it’s ok and received well and if it’s not then hopefully the person with whom I am speaking will explain more clearly what they need.

I am not heartless.  I am not unfeeling.  I am not uncaring.

Learning I was Autistic five years ago was a liberating experience. Over the last two years I’ve enjoyed the freedom to explore as an adult, hindered by no one, countless Autistic experiences outside of my own and those of my kids. I have talked with and read Autistic adults, teens and children and it’s been a learning experience that I will continue to share on this blog because…

It’s the TRUTH about autism:

Autistic Lives.   Autistic Experiences.   Autistic Education.

By Autistic People.

Autistic writers, bloggers, speakers, performers, artists, poets, advocates, activists and so on, working to erase the stigma placed upon us by non-Autistic people.

Autism TRUTH No. 1:

Autistic people have multifaceted, multi-layered feelings and emotions, sympathy and deeply-felt empathy because we are capable.

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AUTISTIC EXPERIENCE Defined… Neurotypically???


Is it Truly the AUTISTIC Person’s Experience?

My son, Bas, was 2.5 years old when it was first suggested to me that he might be Autistic. This wasn’t an informal or formal diagnosis, but a family member mentioning off-handedly:

“Uhm… Renée? I think he’s Autistic.”

I was surprised by the idea. I mean, he wasn’t talking yet, and I hadn’t the slightest idea why, nor was I worried because I didn’t talk until I was almost 3. However, lack of speech wasn’t the only thing different about Bas, and I realize now what others saw when they looked at my son:

The Red Flags of Autism.

But at the time, his so-called symptoms were just part of Bas. For the hell of it, I ended up doing a cursory search of autism and what the diagnosis encompassed. Those of you who follow my blog know that in-depth research into Autism  did not begin for me until Bas was about five, so what I’m sharing with you today happened approximately 2.5 years prior to that.

Now this is NOT a post about diagnosis, so if you were thinking of skipping it and waiting until I posted something more interesting…


We’ll be melting down shortly.


Autism, Its ‘Symptoms’ and Why My Autistic Son Could NOT Possibly be Autistic… Could He?

During my initial research, I accepted little and rejected so much information that much of it remains a blur. However, there was certain information that stuck with me. Meltdown, for instance, was a term I came across a time or two that I found, well… unsettling. The information I found described what could only be called rage-filled tantrums lasting for hours on end. Parents, scared to death, unable to help or control their children’s outbursts. Now, that was more than 8 years ago and I can honestly say I ignored a lot of what I came across and can no longer recall it in much detail. Fear and frustration at all of the negative information I was reading played a huge part in my choosing to forget it as well, but what I do remember is this: What I was reading scared the hell out of me! It didn’t sound anything like my child.

Note:  I have to share that none of the information I came across mentioned adults, possibly because the idea of adult Autistics was merely that…


While I am research-driven, the many symptoms of autism: meltdowns, stimming, scripting etc… were not terms I studied in great detail, mainly because the information given initially did not describe my child. I was assured that if Autistic, my child would be unaffectionate, unemotional, unloving, uncaring, untouchable, unreachable. None of which is even remotely true.

Please keep in mind this was before my son (or his sister and I) was formally diagnosed

My son is the most laid back and most affectionate person in my family. He has a great sense of humor, although I’ll admit I haven’t the slightest idea what he’s laughing about half the time, and he’s very reachable if you take the time to learn how to reach him – i.e. pay attention. You see the information I found did not describe anything I’d ever witnessed. I’ll take partial blame, maybe I should have delved more deeply, but what I found was so far off base, at the time I didn’t see a need for the further exploration that would take place a few years later. However it may sound,

I truly was not a parent in denial.

I was a parent discovering information that did not describe her child. Instead I was finding data on subjects in clinical studies that removed their humanity and created statistics. As a Mom I couldn’t relate the information to my living, breathing, beautiful son.


The Meltdown as a Neurotypically (NT) Defined Experience

I would like to offer a reason as to why I was under the impression we had never experienced meltdowns. Interestingly, the material I encountered was not authored by Autistic people. All information I read was from Neurotypical (NT) resources or learned from one or two NT parents of young children. So the description of a meltdown for instance, was not via anyone who had ever actually experienced them, but from people who had observed them. Same for all the other Autistic ‘symptoms’ I had read about.

I’m sure the accounts had some validity, but it didn’t help me understand what a meltdown was. It gave information as to what to look for: warning signs, characteristics, behavior…

But it didn’t tell me what a meltdown FELT like.

When a NT person writes about our experiences, it makes them impersonal. It is not an experience that comes from within. It can’t possibly convey the emotions and feelings that are felt during the meltdown. It can’t share the trigger and why it was felt so powerfully. It can’t explain the anger, frustration and fear because coming from an NT, it is only an…

Eyewitness account

… and how reliable is that? Unless the Autistic person described the entire experience in detail, in which case the observer still can’t feel what it’s like, then the observation is merely an outsider’s opinion.

At no time in my 42 years, my daughter’s 14 years or my son’s 11 years has any of us experienced an uncontrollable, rage-filled, screaming tantrum that lasted hours on end with no respite. Am I saying that a meltdown can’t be that?

No, I am not.

Meltdowns vary from person to person and each episode can be as unique as the person experiencing it. I have also learned that my meltdowns – yes, I’m finally accepting it – vary from time to time, as do the triggers and the intensity and duration.


So, You Do in Fact Have Meltdowns?

…Absolutely, and so do my kids. Once I joined social media, and met so many amazing Autistic people via Twitter and through other blogs, I learned through their expertise and information sharing that I was having meltdowns, and that I had been having them since I was old enough to remember.

I’ve talked to you before about guilt and masking so you understand that I’ve been in hiding almost my entire life. When I was very young, unless I completely lost it with my older brother, I hid my meltdowns. Why? Because I had no idea what was happening to me and I was scared to death someone would see, think I was unstable and send me away. I can remember sitting in my room as quietly as possible, as young as five years old, rocking, crying non-stop and pulling my hair. I remember biting myself, in places on my body that couldn’t be seen and with enough control to not leave a mark.

As I got older, I remember hitting things: walls, doors, floors, myself. Pacing back and forth, a nervous wreck. The anger had gotten worse by then, and my ability to hide it diminished rapidly. By 12 my Mother decided I had hypoglycemia like my oldest sister, and that was the reason for my outbursts. We couldn’t afford extra doctor’s appointments (and had no insurance), but my Mom had been nursing my sister’s hypoglycemic ‘fits’ for so long, she knew how to handle them. In essence, my Mom was…

Ascribing her NT ideas to explain my Autistic experience.

These episodes continued through high school, and by my freshman year in college, I was a mess. My hypoglycemic ‘fits’ were now accompanied by full blown panic attacks. These new episodes were defined by a medical doctor who, as far as I know, was not Autistic. In addition to both the hypoglycemic and panic attacks, I had insomnia, chronic migraines, and what appeared to be obsessive compulsive disorder (OCD – undiagnosed because we still lacked insurance). My Mom, of course, was the only one who knew because I hid what was going on from everyone else.

Eventually there were extensive evaluations and CT Scans to rule out possible medical causes. Since nothing was found, except low blood sugar (hypoglycemia) in my blood work. The official ruling…

It was all in my head and I needed to calm down.

So, what did I do? Worked even harder to hide everything from everyone and for two very good reasons:

1.) The Doctors must be right (because nothing was found during evaluations)

2.) I was scared to death I was losing touch and might be sent away.



Let me say that again so it will sink in…

Autistics are the experts.

When I am talking about Autistic life, Autistic people are, hands down, the experts. I understand we have many professionals that are experts in the study of Autism, I know several I respect highly. However, unless they themselves are Autistic, they cannot share our experiences. They cannot tell you, personally, what being Autistic is like because they cannot experience it.

And that’s what I had been missing.

I did not know my kids and I had meltdowns (shutdowns, nonverbal moments, that we were stimming, and scripting…) because, until I began reading Autistic blogs and communicating with other Autistic people, the accounts I had read didn’t fit. They were impersonal descriptions of observed behaviors. They were…

Feelings clinically defined and outlined by non-Autistic people.

Can you imagine if you were having some sort of an emotional breakdown, and instead of finding support of some kind that could address your feelings, your triggers and your personal experience, I brought you a checklist of matching symptoms so I could define your experience for you?


Meltdowns Today

Do I still have them? I do. Not often, but I do have them. Do they feel like they did when I was younger? Rarely. The anxiety and anger have lessened dramatically and I believe it is because I am older and have a better understanding of my personal needs and control over my experiences. Sometimes I cry but mostly I just get angry. As SIB goes, I might dig my nails into my hands hard enough to leave marks, but not break the skin. I’ve noticed now that I’m older the non-verbal moments are my biggest tell. I can’t say a word. On the inside I feel as if I’m going to explode, wrought with anxiety and seething with anger, but on the outside I’m pacing and looking for a quiet place away from people.

I won’t share my daughter’s or son’s meltdowns, which are thankfully few and far between. First, because I didn’t ask them. And second, meltdowns are personal experiences and I’m not comfortable sharing that about them, which is why I didn’t ask in the first place. When they’re older, if they like, I’ll let them share.


The Remedy

For me? Easy.

Leave me alone.

And I mean that as kindly as possible. And it sounds like the last thing a parent might do for a child when they see them in emotional upset, doesn’t it? And maybe it’s not the right thing for everyone, but I have always handled them on my own, even before I knew what they were.

A meltdown for me is extremely emotional, embarrassing and frustrating and not something I want to share with anyone.

My kids handle it the same way. If any of us are feeling a possible meltdown coming on, we just leave. Go to our rooms or somewhere in the house we can be alone. I don’t worry for injury with either child, so leaving them alone is not a safety issue. Being alone allows us an opportunity to calm down and gain a better understanding of what is happening and how we would like to deal with it on our own terms. It gives the feelings of anger, and the anxiety and stress time to dissipate so we can begin self-repair. We are well aware that someone is a shout away if we need them, and there is a security in that, but at the same time we need the control over our personal space so we can make sense of things.

Although people tend to use them frequently, compassion and support are the last things my kids and I are looking for during a meltdown. I talked about what that type of support really feels like here, and it’s not a positive experience. We generally like to be left alone for however long it takes for us to feel in control. Exhaustion tends to set in afterwards and we just want to rest.


The Autistic Experience, AUTISTICALLY Defined

Again, so much of the information available is written by non-Autistic people, and while some of it is very helpful (check my blogroll for some excellent non-Autistic writers) it is still someone sharing experiences about others. And these folks will tell you the exact same thing I’m going to tell you:

If you want to learn about meltdowns or any other Autistic experience, and what your child may be going through…


I also have several excellent Autistic writers on my Blogroll that I consider “must reads,” who share their experiences so beautifully it’s as if you’re sitting right there with them. I urge you to read their words and understand the gift they are giving you when they share meltdowns and shutdowns, or what it’s like to be non-speaking, why they stim, their thinking processes and how very differently they experience social interactions and the environment itself.

 If you listen to Autistic people, read our work on blogs and in books, through poetry and essays, or perhaps via social media, you will better understand the…




sunlight glare

S.R. Salas post @squagdotcom “Life Lessons in Light and Sensory Processing”

The following post was written especially for Squag

What Is Squag?

“SquagTM [skwag] is a curated, online experience for kids on the autism spectrum (and their siblings!) that allows them to initiate, explore, and self-discover. Our SquagpadsTM give parents an opportunity to learn about their kids and give kids a new way to learn about themselves, making screen time more meaningful.”


Light Bright

Like many Autistic people I have sensory integration issues (impairments, condition, whatever it’s being called these days…). So what does that mean exactly? For me, it means reactions to sensory input are very intense. My senses of touch and hearing are greatly affected. You will see me avoiding touch if I don’t get to initiate (be in control) or prepare for it and I will cover my ears if noises, which don’t seem to bother others, are too much to take. And while touch and sound are two of my more sensitive senses…

Neither comes close to vision and how light affects me.


Light In Its Many Forms

I love sunlight it feels so good! A sunny day is a great day – it’s shiny and cheery. Oddly enough, as a child I woke to sunny mornings in pain because light was too bright. Even though it wasn’t shining directly in my window, opening my eyes each morning was a process. It felt like I had soap in them. It probably took a good five minutes for me to be able to open my eyes fully, but once adjusted I was fine.

Light has always been a dominating factor in my moods and productivity. The sunnier the day the better my mood and the more work I get done. Natural light is most comfortable and incandescent bulbs are okay, too, but there is one type of lighting that has bothered me my entire life…

Fluorescent lights

I hate fluorescent lighting. After too much exposure it actually has a sedative effect on me, which would have been nice to know growing up. I still remember sitting in class as the lights glared on white paper, white-ish floors and white walls. And the constant flicker that made me feel sick and jittery while the hum tried lulling me to sleep. Do fluorescent lights still affect me today?


I don’t detect the flicker in fluorescents today and lighting covers have changed, so maybe that’s why, but they do make me tired and at times nauseous. So where am I effected?

Grocery stores, office buildings, doctor’s offices, retail shopping, airports… just about everywhere


Hindsight Being What It Is…

Looking back this knowledge would have been so helpful. I believe it could have explained some of the nervousness and lethargy I experienced in school in conjunction with my lack of concentration skills. Imagine if I had told my teacher…

“Excuse me, Mrs. Kraft, these flickering lights are making me sick and the humming is making it hard for me to listen to you. And they’re really bright and make my eyes tired, too.”

What might have happened? More importantly, why didn’t I do just that? Why didn’t I tell my teachers so they could help me?


If you are born with sensory integration impairments and have lived every day with them, then you don’t know differently.

I didn’t know that the other kids weren’t struggling throughout the day. Unlike me, they weren’t fidgety and made nervous or sick by the flicker. They weren’t missing what the teacher said because they were lulled into a dreamy state by the constant hum. And their eyes weren’t tired from the brightness and glare…

I had no idea.

All three of my kids have sensory integration issues so I work closely with their teachers to make sure their days at school are as comfortable as possible and accommodations are made…

  • Fluorescent free work space (natural light whenever possible)
  • Earbuds/headphones with or without music to help cut down on background noise
  • Sitting on an exercise ball instead of a chair while working
  • Breaks to get up and walk around the room or go outside when they need them

I remember how poorly I did in school (elementary years) and how it negatively impacted my learning and perception of school and I don’t want my kids to experience the same. I want their education to be a positive experience so I make sure accommodations are made. When my oldest daughter is overwhelmed by the other students or by noise, she is able to work in a more quiet space and wear earphones to listen to music. My son, too, is able to wear earphones and is given many breaks throughout the day. And my youngest sits on an exercise ball instead of a chair and uses earphones, which help her concentrate more fully.

These types of things are not too much to ask and it is up to me, until they are older, to make sure accommodations are made so they can be…





#EducateSesame… An Open Letter to @SesameWorkshop from @GreggBeratan

This #EducateSesame Flashblog is brought to you by the hard workers at #BoycottAutismSpeaks @Boycott_AS:

“The good people at Sesame Street Workshop have made a terrible mistake by partnering with Autism Speaks. Although we assume their intentions are positive, their association with Autism Speaks is downright dangerous for Autistic children, Autistic adults, those that love them, and all people wanting to learn about autism. Sesame Street Workshop educates children around the globe. If the information they use about autism comes from Autism Speaks, it could create detrimental repercussions for generations to come. 

Because Sesame Street has not done it’s due diligence in learning about autism and Autistic culture before entering this partnership with an organization which is currently under protest by the very people it claims to serve, we must take action to #EducateSesame ourselves.”  – Boycott Autism Speaks
The following is an open letter to Sesame Street from Dr. Gregg Beratan, Lead Consultant for Education, ADAPT Rights Group, Mumbai. He is a wealth of knowledge regarding disabilities and alongside writing and research, Gregg shares information daily from news sources in the U.S. and around the world. You can follow Gregg on Twitter @GreggBeratan and I highly recommend it. He’s a valuable resource in the community and I owe him a big thanks for offering to guest post for the Boycott Autism Speaks, Educate Sesame flashblog.
Thank you, Gregg! :)


Dear Sesame Street,

I’m 44 years old, part of the first generation that has never known life without Sesame Street. Whenever I heard the words “Sunny day, sweeping the clouds away…” a smile came across my face. For this reason I probably watched it much longer than was age appropriate. I don’t think I could possibly count the number of lessons I have learned from your show. My favorite teachers growing up were Mr. Hooper, Grover, Linda, Susan, Mr. Snuffleupagus, Kermit and Big Bird. They were effective teachers, and as someone who struggled to learn as a kid, I wasn’t easy to teach.

The lesson they taught more consistently than any other was…


On Sesame Street everyone was part of the community, every difference was valued. Difference wasn’t demonized on Sesame Street, it was cherished. For this reason I can’t begin to express how disappointed I was to learn that you had partnered with Autism Speaks.

For the longest time Sesame was the only place I remember seeing disabled people on TV. From Linda Bove teaching us about sign language, Dee Schur teaching about Braille, to disabled kids who have appeared in numerous segments over the years…

Sesame has, for much of its history, been the only place on television where disabled people had any visibility; and not only were they visible they were full, active members of the community.

Your lessons about the value of disabled lives extended well past the actors and kids on your show. I can remember seeing so many skits on disability over the years, from Rosita trying to understand why her father Ricardo has returned from military service using a wheelchair to the wonderful Princess in the low tower which elegantly teaches kids that built environment plays a much bigger role in people’s ability to be a part of the community than any impairment does. Sesame Street has been on the right side of disability issues for as long as I can remember, that is until now and your partnership with Autism Speaks.

I can only guess that you looked at Autism Speaks’s name, prominence and their nonprofit status, and assumed they were a good organization to partner with. If you looked a little more closely you would have seen that they are the antithesis of everything you have stood for over the last 45 years.

Autism Speaks is an organization whose primary message is that autism and Autistic people are to be feared and combated.

You wouldn’t have to look very far to see the contempt they hold for Autistic people. You could take note of the fact that they have no Autistic people serving on their board of directors, or you could listen to the way their founders speak about Autistic people, referring to them as burdens, lying to the world saying their families are not living but merely existing, they paint a portrait of Autistic children as family destroying monsters (and not the good Sesame Street kind of monster). If you looked at these things you would definitely not see an organization worthy of associating with Sesame Street.

As someone who sees himself as neurodivergent (although not Autistic) and as someone with many friends and loved ones who are autistic, I find it disturbing that a show I love, one with such a rich history of promoting acceptance would partner with an organization that has made the eradication of a whole group of people a central focus of its mission. Autism Speaks spends more on their salaries than they do in supporting Autistic children and their families. And if you read any of the information they offer, you might think there is no such thing as an Autistic adult. If you truly want to work with organizations that promote autism acceptance, organizations that can “See amazing in all children” I suggest that you look to the Autistic Self Advocacy Network or The Autism Women’s Network or The Golden Hat Foundation, these organizations understand the value autistic lives add to the world.

Since this partnership was announced Autistic people have written to you, tweeted to you, messaged you on Facebook, tried calling you and their concerns have been dismissed or ignored.

This is not the Sesame Street I grew up with. It is not the show that stood up for acceptance and equality and against fear and hate, the Sesame Street of Mr. Hooper, the one where every member of the community was accepted for who they are. I hope you will reconsider this partnership; Autism Speaks stands for everything Sesame Street has opposed. I still love Sesame Street and everything it has taught me over the years, but right now I am deeply disappointed in you.


Dr. Gregg D. Beratan



Criptiques Word Cloud final

S.R. Salas post: “Advocacy In Others’ Words” for T-21 Blog Hop @Down_Wit_Dat



Jen who blogs over at DownWitDat and also runs the monthly T-21 Blog Hop has been rather generous lately in selecting topics for us to write on and it goes something like this…

“Write whatever you want, just make sure it’s an advocacy piece!”

I’ll have to admit that with such strict (hee hee) guidelines it’s been incredibly difficult to stay in bounds. However, I have done it each month except one I think and it generally sounds something like this…

“Oh (insert curse word) Jen, I forgot! Can I link one of my old posts??”

It’s not because the T-21 Blog Hop is not important, I assure you it most definitely is, which is why I always try to participate. It’s the fact that I still can’t figure out where the time between the first of the month and the 21st goes,

Every. Single. Month.

Is it a phenomenon of having kids or getting older? Or perhaps a combination of the two? Whatever the reason, the fact remains that at least 21 days (and sometimes more) mysteriously go missing from my calendar each month. But that’s an entire blog post in itself.




I’m not going to write a post on my advocacy efforts past and present – you get that here and on Twitter (and Facebook when I can handle it). Not my show today, folks. Instead, I’m going to sell you something!

Not literally, so keep reading.

I just finished reading Criptiques, edited by Caitlin Wood. It is a collection of essays by disabled writers addressing the “provocative sides of disability” some whose work I already know and love (Lydia Brown, Ibby Grace, Alyssa Hillary, Emily Ladau) and many I had the pleasure of reading for the first time. My thoughts…


But, since speechlessness doesn’t make for a very good blog post, I’ll do my best to do it justice by telling you Criptiques is:

Advocacy  •  Activism  •  Awesomeness

I heard the word “crippled” growing up when speaking of disabled people. In those days it was used to describe people with physical disabilities. As I began to get into advocacy, I was told the word “crippled” was a derogatory term right along with “disabled” and that out of respect I shouldn’t use them.

It’s important to note that I was told I shouldn’t use these terms by non-disabled people.

The very same people that told me not to call myself or my kids “Autistic.” That obviously didn’t stick. And as I found myself drawn further into the disabled community I began to learn from other disabled people. See what I did there? I used the word “disabled.” It is an Identity First Language (IFL) v. Person First Language (PFL) choice which is another post entirely and if you’re not willing to wait, there’s a great piece on that very topic in Criptiques. However, I will sum up for you quickly by saying while I personally choose IFL, I believe it is up to each person to choose how they want to speak (or not speak) about themselves. It’s about respecting individual choice and I ask the same in return.



In her Introduction, Criptiques: A Daring Space, Wood invites readers in unapologetically

“Crip is my favorite four-letter word. (…)a powerful self-descriptor (…) a challenge to anyone attempting to conceal disability off in the shadows.”    - C. Wood

Uhm… should I be reading this? I thought “crippled” was a bad word?? Yet Wood writes a most tempting introduction that has me champing at the bit to get going…

“Our crip bravado reaches out like sun rays and emboldens those who need our swagger the most – those strangers to disability pride. The ones who’ve travelled a long, lonely road and finally discover the joys of chosen family and friends and a rich history they don’t teach in schools.”   - C. Wood


“Welcome to Criptiques:  a space of shameless flaunting and significant contribution to crip culture by crip culture.”   - C. Wood

Oh, yes! She had me at “bravado“, “swagger” and “shameless flaunting.” I had to reluctantly remove my fingers from the keyboard of my laptop several times to keep from sharing Wood’s entire Introduction, an advocacy piece in itself, with all of you. This post is not a review of Criptiques, although I’d like to write one at some point because it’s an important book. However, after just finishing it I have some re-reading to do because, as my friend Lei and I were discussing, not everything sinks into our Autistic brains on the first go round. In addition to that, a lot of what I learned needs to marinate, to gel. So many new thoughts and ideas rolling around inside my head I couldn’t possibly put it all into words at the moment. Instead what I offer you is a trailer of sorts, a preview.



Learning is a continual process I plan to enjoy for the rest of my life because it is impossible to know everything. Obviously. With that, one irksome creature remains constant and I have to admit I’m becoming less surprised each time I encounter it: my own ignorance.


I don’t curse here very often, but the more I get into disability rights advocacy and think I’m really starting to “get it,” the more I realize how much there still is to learn. And I am grateful for the knowledge and know it will serve to make me a better advocate/activist. Criptiques is one of those pieces I consider a teaching tool as I found myself learning loads of new information from the Introduction on p. 1 to the last word on p. 256.

Okay, so here’s your teaser…

A collection of words to get you thinking:

Ableism • Activism • Ageism • Anorexia • Art • Autism • Beauty • Blindness • Brain Injury • Burlesque • Cerebral Palsy • Chronic Pain • Crip Culture • Desire • Disabled • Discrimination • Drooling • Erasure • Gender • Hearing Impaired • Humanity • Identity • Intersectionalism • LGBTQ • Love • Marginalized • Noncompliant • Oppression • Poverty • Privilege • Provocative • Racism • Rebellion • Revolutionary • Schizophrenia • Seduction • Sexuality • Sizeism • Truth • Unapologetic • Vulnerability

And much, much more…

Do I have your attention yet? Good! Am I going to tell you more about the book? Nope. You can buy it in paperback, which was my first choice. What can I say? I’m old-fashioned and like to hold a book in my hand, make notes on its pages and dog ear ‘em. And for those of you who are way more hip than me, until the eBook is ready, it is being offered as a free downloadble PDF. However you come by it, I highly recommend you read it. Whether it’s to agree, disagree or spark further discussion, the topics addressed – which some may find controversial – are most definitely thought-provoking and educational.

Criptiques opened my eyes wider, I don’t know if I can blink anymore, and my mind further. As disability rights advocates one of the most important things that must be done is to listen to disabled people. Our ‘voices’ are important whether we agree with each other’s point-of-view or not. And it’s not always going to be about agreement. Just as it’s not all about you, or me, or him or her. Instead, it’s about the entire disability rights community to which we belong. It’s about ALL of us.

In closing, I promised Jen at DownWitDat an advocacy piece so here’s my offering and this time it’s in the words of others:

 C R I P T I Q U E S . . . Read it!



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