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

24 Jul
July 24, 2014

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.”

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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?

Absolutely

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?

Simple…

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…

SUCCESSFUL  IN  SCHOOL

 

 

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

29 Jun
June 29, 2014

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
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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…

ACCEPTANCE.

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.

Sincerely,

Dr. Gregg D. Beratan

 

 

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

21 Jun
June 21, 2014

 

ADVOCACY

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.

Anyway…

 

IN OTHERS’ WORDS

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…

**speechless**

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.

 

NO APOLOGIES

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.

 

YOUR ADVOCACY TEASER

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.

Damn!

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!

 

 

S.R. Salas post @squagdotcom “Sweet Summer: Blessed Breaks and Divine Decompression”

07 Jun
June 7, 2014

The following post was written especially for Squag! If you haven’t heard of it, You must check it out…

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.”

 

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Sweet Summer:  Blessed Breaks and Divine Decompression

At some point each of us needs a break from something. For many Autistic people the need for breaks is more frequent and tends to last longer. What would be considered an uneventful day to non-Autistic people: going to school, going to work or whatever the daily routine is, can be extremely exhausting for us.

While peers are in school focusing on academics and socializing, my kids are enduring sensory overload (lights, sounds, textures, odors).

In addition, they are trying to focus on academics that are generally not taught in ways that their brains get right off the bat. Couple that with the fact that while their peers are socializing, my kids are busy trying to observe, learn and even mimic them so they can – if they’re lucky – get a shot at socializing. That is if they’re not so busy learning the rules of engagement that they either forget to socialize or are too tired to try. I know these things because we talk about it, and I speak from experience. Here’s what I’m trying to get at…

We’re exhausted AND we need breaks… Lots of them!

My two oldest children and I are Autistic. My youngest is a neurodivergent as well and there has been speculation as to whether or not she is Autistic, too. If she is we will know some day, and all in good time. So while all three of my kids and I are very different people we do have one major thing in common…

A need for Decompression

When they get home from school, my kids scatter. From 4:00 – 6:00pm I have the quietest house on the block. They grab a snack and disappear. Their absence is not seen as some form of antisocial rebellion, but exactly for what it is…

Break Time!

And our most favorite break of ALL time… Summer! Summer means many things to us: Sunshine, warm weather and water. We love water and the escape it provides. It offers wonderful contradictions doesn’t it? Water is calming and exciting, relaxing and invigorating. There is both serenity and joy in its sound as it ripples, babbles, splashes and falls. And in its color or lack thereof, and the way it feels on my skin! And while rivers and lakes are gorgeous, waterfalls magnificent and swimming pools divine, there are no words to accurately describe my feeling for…

The ocean.
I love it so much I’m stimming as I write this!

 

My kids and I love the ocean and all that goes along with it. Heat, sun, breezes, hot sand, wet sand, waves crashing on the shore, and most importantly the water itself. While we four love the surf and sand…

My son and I are the fish.

We are the ones that go out into the water and pretend to not hear the others as they call us in for a snack; And then an hour or two later for lunch; And then hours later when it’s time to leave. We cling to each other, smiling conspiratorially, and it’s heaven! It is just the two of us, and the ocean, the pelicans and gulls, and a complete lack of conversation. My non-speaking 11 year-old son, who rarely says a word – talking is extremely difficult for him and he types to communicate – leans in and whispers excitedly:

“Ocean fish”
yes, I reply to a phrase most wouldn’t understand if they heard him say it
 
“Ocean crab”
yes!
 
“Ocean dolphin!” more excitedly as we watch a pair swim by.
Yes! Yes! I match his excitement. With the ocean comes an ease of speech my son almost never enjoys.
 
“Ocean shark?” he whispers with a wide-eyed grin
Yes…. NO! I reply as he giggles.

Voices are calling to us from shore, barely audible over the crashing surf. I look at my son with a gleam in my eye: “Did you hear something?” I ask. His eyes light up with mischief, his grin widens but he shakes his head no. I smile in complicity. Me either, must have been the wind.

               And we break.

                                 And we decompress.

                                                       And we swim in…

SWEET SUMMER

 

 

 

 

#My Writing Process Blog Hop: S.R.Salas | Autism Blog

19 May
May 19, 2014

We’ve done blog hops here before, and if you follow me, you know I always participate (only missed one I think) in the monthly T-21 Blog Hop hosted by Down Wit Dat. Basically a blog hop is a way to share similar posts from other bloggers you might be interested in reading. The #My Writing Process blog hop  is dedicated to sharing different writing processes and we will each do so by answering four questions which you’ll find below.

 

SO, HERE’S WHAT HAPPENED . . .

I was sitting here minding my own business when I received a Facebook message from Cynthia Kim who blogs over at Musings of an Aspie, asking me to participate in a Blog Hop for writers – you can read her post here. By the way, my “sitting here” comment should be expounded upon at this point so you will know what I was actually doing:

Staring blankly out the window trying to decompress.

Assuming a frozen posture hoping to blend into my surroundings chameleon-style, so I might go unnoticed for a time in hopes of quietly relieving myself of the ridiculous amounts of stress and anxiety I incurred during the exciting (overwhelming, over-stimulating) month of April.

For those of you who don’t know Cynthia, all I can say is: Get to know her! When I joined the online Autism Community a year ago, Cynthia, author of “I Think I Might Be Autistic”, became one of my go-to bloggers. I learned more from her about myself than I could begin to explain. She is a lovely human being, an excellent writer and a great teacher. Thank you, Cynthia!

 

WHAT AM I WORKING ON?

Currently I’m working on a parenting book, untitled as yet, and I’m really excited about it. I have been asked several times if I was planning to write a book on the subject, and while it was not the book I had in mind at the time, it is the book I am now writing. Why? Because people are asking for it. I have learned through comments on my blog as well as other social media that many non-Autistic parents are desperate for a better understanding of their Autistic children, but unfortunately many of the resources out there are heavily medicalized.

It seems that while there are many books on autism, there are too few written by actual Autistic parents of Autistic children.

Teaching is something I always hope to accomplish through my work and I have to say I’m always excited to meet parents that go straight to the source - Autistic people! My other writing includes my blog where I write on autism, disability rights, advocacy and the importance of education. And I have also had the good fortune to be a contributing writer to Autism Parenting Magazine as well as Parenting Autistic Children with Love and Acceptance (PACLA) Magazine. Other notable writing opportunities include guest posts for Kate Winslet’s Golden Hat Foundation, Squag.com and Handicap This!

 

HOW DOES MY WORK DIFFER FROM OTHERS IN THE GENRE?

That’s a difficult question to answer. When I consider all of the Autistic writers and bloggers out there, all writing from their unique perspectives, I feel our work differs in many ways. Maybe that’s because my autistic brain is so detail-oriented? But I see so many exciting differences when I read pieces from other Autistic writers so I try to share others’ work as much as possible. I believe we are so very fortunate that when we write, each of our voices is so different – more “teachers” to learn from. So how does mine differ?

I would say because I am an Autistic parent to Autistic children, and also because I am a woman.

I realize I’m not the only one, but we’re told there aren’t as many Autistic women as men out there - that’s what the numbers tell us anyway. Personally I don’t believe that. I think we’re harder to diagnose because assessments don’t properly account for female/male differences, but that’s just my take on it.

 

WHY DO I WRITE WHAT I DO?

My blog originally began as a way to share my experiences in hopes of educating people from my Autistic point of view. Then, after completing the Virginia Board for People with Disabilities – Partners in Policymaking program my inner-advocate was unleashed! Being the parent of 3 disabled children, advocacy is something I have always done, just not so publicly. Adding that component to my writing was a natural progression.

I suppose you could say my blog is an ever-evolving creature that grows and changes with me, as it should.

And just as important as the advocacy, we need to hear more from Autistic people themselves, they’re the real experts. There is so much information out there about Autistic people written by non-Autistic people and that needs to change. On my blog, on Twitter and Facebook, I do what I can to promote other Autistic writers, bloggers, artists, photographers, etc… We need all the “voices” we can get.

 

HOW DOES YOUR WRITING PROCESS WORK?

This question completely threw me because I don’t know that I actually have one. For those of you who don’t know, I’m not a writer… Huh? Okay, I am a writer, but even though I’ve written a book, write for magazines, own a blog and guest blog for others, I had never considered myself a writer. My editor, yes I even have one of those, frustratedly assures me that I am in fact a writer every single time he reads my work. I suppose not going to school or working to become one, and never attempting to write prior to the last couple years led me to believe that I wasn’t a writer when in fact that’s exactly what I am. So being a writer that hadn’t acknowledged it left me completely confused as to even having a process of any kind, because I’d never actually thought about it.

Oh! My writing process. Sorry. Here’s what I do…

I basically pull from past experiences or current observations. I take the idea and sit down and have a conversation with you. I think of my writing as talking to each of you personally, as if we were hanging out and the subject came up. That’s really it. I suppose that’s my process: Writing to you as if we’re visiting with one another.

 

COMING SOON…

Next up on the #My Writing Process Blog Hop are two very special people who I had the pleasure of meeting through Twitter this past year. I have a great deal of respect for them as writers and consider myself lucky to call them friends:

Alex Foreshaw who blogs over at ‘Married with Aspergers’

M. Kelter who blogs over at ‘Invisible Strings’

Please visit their sites to learn more about each of them and make sure to check their blogs next week for their answers to the writing process questions!

 

S.R. Salas | Autism Blog: Expressions of PosAutivity #AutismPositivity2014

28 Apr
April 28, 2014

Expressions of PosAutivity, our 2014 Autism Positivity Flashblog, is intended to be a celebration of the multiple and varied ways to express experience or convey ideas. This year we hope to highlight the importance of flexibility in communication within our diverse community and honor multiple forms of personal expression, from the written word, to art, to photography, or a video (as a link)

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The Art of Communication

 

 “Are you lost or incomplete? Do you feel like a puzzle, you can’t find your missing piece? Tell me how you feel. Well, I feel like they’re talking in a language I don’t speak. And they’re talking it to me.”   -  Coldplay

I love Coldplay. When I first heard the song ‘Talk’ I felt they had written it for Bas. And not because of the whole “puzzle” mention, I don’t actually go for the puzzle piece/autism thing, but because I wondered: Is that how he feels? Does he feel like we’re talking in a language he doesn’t speak? I mean literally, we do, but how does he feel about that? It’s a conversation I’ve had (one-sided of course) with him since he was probably three years old. I wanted him to know that I would always be there for him as long as he needed me, to help him understand the world in his way, and to make sure he had whatever tools necessary to navigate it. And that at any time if he felt like something was missing, I would help him find it.

The funny thing is, the parts others found missing in Bas, I never saw.

I go through life living it, being in it, doing my thing, whatever that may be. I find it surreal at times to say I have no real complaints – mainly because at a very young age, I learned I had no room to complain because no matter what, someone always had it harder. At times I might feel slightly guilty because I think to myself how very lucky I am to have the family I do, especially my kids. People have always looked at us, my kids and me, wherever we go. In the past I would feel a slight twinge of pride, which I quashed quickly due to this, because I was sure they were looking at me in envy of my fabulous kids – obviously wishing theirs were half as cool as mine! I have never paid much attention to other people (not in a rude way, but I’m usually otherwise occupied), and once my kids came along my acknowledgement of others lessened further.

But that was why people were staring wasn’t it? Envy?

 

Eyes Wide Open 

Merriam-Webster defines communication as a process by which information is exchanged between individuals through a common system of symbols, signs, or behavior.

It never occurred to me that not being able to speak was a sad thing, or a bad thing. That people saw my son’s lack of speech as a tragedy – and they felt sorry for him. Even worse, and more peculiar, they felt sorry for me?! These Moms weren’t staring at me in envy, they were staring at me and thanking their lucky stars that they weren’t me. That their kids were “ok.” I was oblivious to the fact that these women saw me as a ‘getting by’ or as ‘surviving as the parent of a child with a disability’ (I’ve heard this phrase before and thankfully can’t relate).

My love and hope for my kids, all three of them, and my faith in them as human beings shielded me from the thoughts of others. And that oblivion, my friends, is compounded by the gift of autism. My autistic brain never understood what other Moms meant when they said to me:

“I don’t know how you do it.”

How I do what? You see being nonspeaking is the way Bas was born, just like every other human being that enters this world. Babies don’t tell us what they want, but they absolutely communicate what they need. And as my son has grown, like other children, he has continually communicated – just not with words. And I have never not known what he wants.

So I began to take note…

I had always seen the way people look at my kids and me, specifically with Bas. And with the newfound information that people saw my son’s inability to speak as “a shame,” my perception began to change with it. I began to notice as they hugged their kids a little tighter, and if I looked closely enough, I swear I could see them sigh in relief. That last part may be my imagination, but I don’t think I’m too far off the mark. And I didn’t fully get it until I read a quote some time ago from actress Kate Winslet, founder of the Golden Hat Foundation (if you’re not following @KateWinsletGHF you should be!). Ms. Winslet’s daughter asked:

“What if I wasn’t able to tell you I love you, mummy?”

I was confounded by that question, because the answer was so easy. I felt like raising my hand and saying, “Oh, I know! Pick me! Pick me!” Because my very simple answer would be that you would just show me. And that’s what it’s all about, right?

Communication:  Information exchange between individuals.

I have never wondered if Bas loves me. Never. He looks at me and I know because he doesn’t look at anyone else that way. But that innocent question, “What if I wasn’t able to tell you I love you, mummy?” spoke volumes to me. I always thought when people commended me on my ‘strength’ and applauded me raising my son (that one still boggles the mind and if you weren’t sure, it’s not a compliment) that they were being nice. Like they were telling me ‘Good Job, Mom!’ not in a sympathetic way but more conversationally, you know like you would say to any Mom: “Your kids are wonderful, what a great job you’re doing!”  When I read Ms. Winslet’s words, the words of her daughter, it opened my eyes a little wider. And then, holy cow I finally got it… These Moms, the very same ones that praised my strength and commended me for raising my son, actually meant what they were saying to me.

They were not looking at me with envy they were looking upon me with pity! They were relieved they were not me!!

I am so glad Ms. Winslet shared the lovely exchange she had with her daughter, it’s important. It gives me an idea of what non-autistic people might be thinking when they look at us together. I’m not in the least bit offended. I understand they might feel this way because they don’t know. Parents may sigh in relief and count their blessings because they are imagining how they might feel if their child could no longer speak and if their child was Autistic. But they can’t really do that because it’s not the same. They are trying to imagine a child that never existed. These parents imagine a part of their child - the ability to communicate with words - being taken away and I will agree that sounds scary.

But you see Bas never lost his speech, because he never had it to lose.

In return there is something I can’t imagine: My son talking. He is 11 years old and I have never had a conversation, verbal or typed, with him. Am I sad? Not in the least. You see, I can’t imagine a speaking, non-Autistic 11 year-old Bas because that child never existed. Do I wish this imaginary boy did? NO. WAY. And why is that? Let me quote myself here because it’s really, really important:

“… the parts others found missing in Bas, I never saw.

As I said I have never had a conversation with my son, verbal or typed, but we’ve been connecting since the day he was born. Bas has communicated since the beginning with his eyes, his expressions, his body and with behaviors and emotions. He is learning to use assistive technology (iPad) to communicate, and some language but it’s extremely difficult for him. If you met us on the street and spoke to him, you most likely would not understand a word he said to you, and that’s if he chose to speak at all. Not because he’s rude, but because verbal communication is hard. It takes more time for him to process than most people are willing to spend with him. And the assumption is that because he cannot speak, he doesn’t understand. Let me assure you folks, he most certainly does. And that got me thinking about a quote I’d seen in a number of places that read:

“Just because I am unable to speak does not mean I have nothing to say.”

And honestly, I grew up believing false assumptions such as non-speaking people not having a thing to say, and I talked about that here. Learning I was completely incorrect in that is yet another instance in my life I thankfully embraced my wrongness and learned from it, and I talked about that here. I happily own that loss of ignorance (gratefully educated in these instances by disabled people themselves) and will share lessons learned from it again and again if it will help even one person realize the damage that way of thinking causes. I’ve seen it firsthand with my son and with my many disabled friends.

Having a nonspeaking child as well as a daughter (and myself) who experience nonverbal episodes, I can assure you we absolutely have something to say.

 

Can You Miss Something You Never Had?

Bas has never shown sadness, frustration or anger at not being able to talk. He’s a seriously happy kid. Does he get aggravated when people don’t understand him? Well, yeah, but don’t you? When he does become frustrated, I’m willing to believe the aggravation is directed more toward the person’s inability to understand him than at himself for not being able to speak. Because for Bas, speech has never been a natural form of communication.  We don’t emphasize or focus on his lack of speech. We talk to him (just like we do our other two kids) and use whatever form of communication - gestures, pictures, typing, body language - that gets the point across.

We have to learn to “listen” to more than just spoken language.

My hopes for my son do not hinge on whether or not he will be a savvy conversationalist or a non-speaker that uses assistive technology. I have no way of knowing whether or not he will even choose speech as his primary form of communication. Whatever his choice, it’s important to share that Bas is understood in so many ways: His gestures and body language; through some verbal exchanges; and with gentle touches and pressure point squeezes; and with his iPad; and, my favorite, with kisses and smiles. He will get what he wants and what he needs because without speech Bas, in his very own way, has perfected:

 

The Art of Communication

 

 

 

 

Accommodating Tragedy, Part III: A Guest Post with Brian Rowe @cartesianfaith

27 Apr
April 27, 2014

The following is Part III, the final installment of an excellent three part series from Brian Rowe. If you have not yet read Part I and Part II, you must go back and read them! Brian shares a lot of important information in both pieces that build the foundation for Part III. If you have read Parts I and II, well done!! The conclusion awaits…

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This is a three part series on managing unavoidable social situations. In my case it was due to a death in the family, but situations often arise where extended social interaction becomes an obligation. These essays reflect on how I used my toolkit of coping mechanisms to make the most of the situation.

Social interactions

I’ve presented some examples of using my toolbox to manage situations that are most challenging to me. Now what happens in a social situation, where I’m confronted with all these challenges at once? Social interaction is more than just a confluence of these obstacles. I also happen to be a very solitary person and can burn out in social situations rather quickly. My tolerance for small talk is limited, and when confronted with too much I feel as though I am being suffocated. Having extended conversations with people is a huge stressor for me, as it usually ends up being silent and awkward. I have this problem even with people that I’ve known for a long time including my own family. This is due to the fact that the only thing readily accessible in my memory is my current hyper-focus, which is usually not something others are interested in nor know much about.

Plus I find small talk extremely tedious because in my logic it is inefficient filler that could be reallocated to something productive like reading, working, or just thinking.

My strategy in this situation was to reframe the situation into an anthropological exercise. By observing the mannerisms and protocols between the people I’m around, it helps to ease some of the anxiety surrounding the social interaction. Now my role is intentionally one of an outsider, so it is okay not to be familiar with all the protocols. Once I have collected enough data to build an internal model, then I attempt a bit of mimicry. This isn’t so different from an anthropologist “making contact” with a primitve culture. This extended family consisted of extroverts that joked around a lot, using exaggerated teasing. Knowing this I could laugh when the teasing was directed at me and also initiate some of my own successfully. At times I would mess up, like when the topic suddenly turned a bit more serious. Apparently the protocol is not to use exaggeration under this circumstance, so I simply updated my rules.

In these types of settings, I rarely ever initiate a conversation. Instead I wait for someone to start speaking and establish a topic, and then I can start to dig out that subject from my brain catalogue. Once the conversation gets started I can usually maintain it by asking targeted questions based on what has been mentioned.

The rules for a conversational volley is fairly straightforward: one must either affirm the other person’s speaking, ask a question to keep them talking, or tell a personal anecdote or other story that is moderately related to the counterpart’s oratory.

This strategy works very well in a group of extroverts as they rarely ever pick up on the fact that it’s more or less a one-way conversation. On the other hand, with introverts it can be disastrous if the counterpart is also not good at initiating conversation. Sometimes it’s better to engage in non-verbal activities. The family hosting up had a pool table, which I knew was a good way to spend time with minimal social pressure. Games like these are great for building camaraderie while also requiring less talking than conversation. The limited number of exchanges is fairly easy to memorize and mimic. It also allowed me to build rapport, which made it easier to engage in conversation later.

I also took advantage of the general acceptance of alcohol within the group. Even though the beer wasn’t to my liking, I knew that the alcohol content was at a level that was good for improving my speech. So I started early and consumed it in measured amounts to stay engaged with the group. Taking medication was a difficult change for me.

Having grown up isolated and alone, my independence became a source of pride and resilience.

This included independence from doctors and medication. Even when I got sick, I would forgo antihistamines just because I felt like I should be able to conquer the sickness on my own, without help from anybody. It really wasn’t until I became aware of Asperger’s Syndrome and ADD that I started questioning the efficacy of this philosophy. Essentially my pride of self-reliance was at loggerheads with a lifestyle that was optimal for my particular neurology. It was only when I was reminded that drinking was a form of self-medication that I decided that I should explore other options that might be safer than heavy drinking. So now I preemptively take anti-anxiety medication if I know that a situation will be particularly taxing.

Recovery

The final step for me was to ensure that I had adequate time to recover from all the socializing. I slept in every morning as I get physically and mentally exhausted from conversation. I also took breaks from the socialization. Thankfully in the age of smartphones it is no longer rude to pull your phone out and stare at a screen for a while. This allowed me to work on things that were important to me. When i have time to focus on my projects it’s easier for me to be flexible and socialize since I’m getting some of my needs met.

I still ended up crashing when we returned to New York, but I’ve learned to factor in a day or two of recovery after heavy socilization, which tempers my stress. Overall my toolkit has enabled me to manage difficult situations in ways that are healthy.

By working with my strengths and accepting my weaknesses, I’m able to tailor a plan and adapt to situations while remaining in control and even having some fun.

 

 

Accommodating Tragedy, Part II: A Guest Post with Brian Rowe @cartesianfaith

23 Apr
April 23, 2014

The following is Part II of an excellent three part series from Brian Rowe. If you have not yet read Part I, go back and read it! Brian shares a lot of important information that builds the foundation for Parts II and III. It’s also where I introduce Brian and give you lots of links to learn more about him and what he does. If you have read Part I, YaY!! You may now proceed to Part II below :)

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This is a three part series on managing unavoidable social situations. In my case it was due to a death in the family, but situations often arise where extended social interaction becomes an obligation. These essays reflect on how I used my toolkit of coping mechanisms to make the most of the situation.

Dealing With Uncertainty

Not knowing what to expect or knowing what the outcome will be in a given situation can be extremely stressful for me. This is because I need a certain level of predictability to function in an environment. It takes me a while to adjust to new situations, which are cognitively taxing. In college, the first day of class would always be stressful because I wouldn’t know where to sit nor who would be in the class. Once I chose my seat I would remain there for the semester. If my seat was taken, I would get stressed out trying to determine where else to sit. The same is true at movie theaters, where I agonize over choosing the optimal seat.

Part of my anxiety around uncertainty stems from the fact that I am obsessed with efficiency and optimization.

I abhor wasting anything, including time. In this hospital situation, the schedule was wholly determined by the health outcome of an individual. To manage my anxiety I used the reframing trick. Instead of worrying about the optimal way to spend time, I reframed the goal to be providing emotional support for my wife and getting to know the family. That meant that my obsession with optimization was directed away from time and towards improving my interactions with others. This also helped me reframe the uncertainty around the timing and schedule to one of learning, which is something I can hyper-focus on.

Sensory Overload

I haven’t decided whether hospitals are better or worse than airplanes in terms of hostile sensory environments. While others are most sensitive to light, my sensitivity is highest with touch (including temperature, humidity, and air pressure), followed by smell, sound, and finally light. Airplanes are worse for touch and sound. Hospitals are probably tied for sound and worse for smell and light. Sounds are not only distracting to me, but certain frequencies can be quite painful. Hospitals have so many beeping devices all intentionally loud to attract the attention of a nurse or orderly. Plus the smells of disinfectant, stuffiness, etc can be rather nauseating. I found breathing to be the most effective defense for this situation. In daily life I regularly manage my breathing to avoid smelling things. Thanks to my martial arts practice I can preemptively breathe at the first sign of a foul odor and then do a sequence of exhale, hold, exhale, hold, until there is an opportunity to inhale.

It turns out that breathing can also refocus your consciousness to diminish the impact of sounds.

With enough practice you can even carry on a conversation or continue some other primary activity. In the hospital this was an invaluable tool to manage the sounds and smells. Breathing can be found in all sorts of disciplines these days, from meditation, to sports, to new age religion. What’s most important is to find one that is compatible with your personality and then try it out.

Memory Recall

Most people don’t know that I live two lives. My friends and colleagues see a smart workaholic with a handful of quirks. Strangers and neighbors see an awkward recluse that can barely utter a complete sentence. When I was younger I didn’t know which side of me would appear when meeting new people. Over time I began to understand how my brain worked and how I could influence which one would appear in a social situation. Much of it has to do with memory recall. The smart workaholic has access to an amazing depth of knowledge available almost instantaneously. This treasure trove is accessible when I’m in a hyper-focused state but only for the subject that I’m hyper-focused on. Retrieving any other information is a slow process filled with jumbled words and sentences.

I end up learning stuff over and over again because once I switch to something new to focus on, I will have forgotten (or it’s buried) what I learned previously.

Over time my sophistication will increase as will my insights, but to access them will take a while. Speech is cognitive for me, so it’s no different than any other intellectual endeavor like mathematics or writing. The reason is probably due to the fact that I think spatially. I see objects in three dimensions in my head and words appear visually in collections of associations. This results in highly non-linear thinking that is difficult to sequence linearly in real-time to form spoken sentences. As my wife will attest sometimes I will finish a sentence with a hand movement that traces out an action I see in my head but unable to articulate. Words are also difficult to access, which requires a lot of memory recall. An example is when I tried ordering a sandwich at the hospital cafeteria. I wanted mayonnaise and mustard but what left my mouth was “mayo and mayonnaise”. It didn’t register that I said the wrong thing, and the server was very confused asking over and over “what else?” to which I would repeat my refrain of “mayo an mayonnaise”. I really couldn’t understand why she was putting so much mayonnaise on the sandwich until it finally occurred to me that I was not saying what I had intended. Later I was looking at the red onions but ended up saying “red peppers” instead. It wasn’t until visually I saw the difference between the shape and color of the objects that I realized I said the wrong thing.

So how did I overcome this difficulty when the situation required so much social interaction? Partly due to understanding when I am most talkative: either talking about my current obsessions or when I’ve consumed alcohol. Even though the situation was somber, the family stayed upbeat. I suppose it’s like the wake mentality of celebrating a person’s life instead of mourning a person’s death at a funeral. This meant in the evening there would be some drinking and socializing. For me I knew what dosage of alcohol was appropriate to facilitate talking without losing control.

I also took advantage of steering a conversation to my obsessions if I thought there was a good overlap.

For example, I am obsessed with ice climbing and love to talk about it. One conversation was about how someone had a fear of heights, so I try to casually mention that they probably wouldn’t like the sport I do. Sometimes it works and other times it doesn’t, which is okay too, since the goal was to engage in conversation and not look out of place.

The other technique is auto-priming. Knowing what a situation entails beforehand allows me to preload conversations, mannerisms, and personas. Not only am I able to draw from past experiences and interactions, it’s also easier to pick up on new mannerisms and expressions since I’ve filled my mind with the socialization program.

If I don’t auto-prime, then conversations unfold like this: someone asks me where my Dad lives, and after a pause I say Michigan.

Considering that we are all sitting in a hospital in the Detroit area, the response is largely silence followed by bemused laughter. Had I auto-primed, I would have known that strangers often ask about family, and since this extended family knew my Dad lived in Michigan, I could have loaded that information. Since I didn’t, only the stock answer was available, and I responded without applying context to the exchange.

Sometimes it takes multiple tries for a tool to work. Other times you may need a combination of tools. The key is to try things out. Even if they don’t work at least you place yourself in an active role, which is healthy. In part three, I’ll discuss how I used all these tools to weather long periods of social interaction.

Accommodating Tragedy, Part I: A Guest Post by Brian Rowe @cartesianfaith

20 Apr
April 20, 2014

I was tweeting with my friend Brian Rowe - follow  him on Twitter @cartesianfaith, he’s wonderful! - about the various tools and techniques we have to employ just to manage social situations, and the work that goes on behind the scenes so we can participate in what society considers an acceptable manner. Then I had a brilliant idea:  Ask Brian to share from his point of view how he handles these things. So I did, and he agreed, and it’s really great – I can’t begin to tell you how much of it I related to!  

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Meet Brian…

Brian Lee Yung Rowe is founder of Zato Novo, a boutique R&D firm that licenses quantitative models as a service. His work has been featured in The Guardian, TIME Magazine, and other media outlets. He also teaches mathematics and machine learning at the CUNY Master’s program in Data Analytics. Brian writes at Cartesian Faith – Insights of a modern alchemist, and is writing a book entitled ‘Modeling Data With Functional Programming In R’ to be published in 2015. He is on the autism spectrum, exhibiting characteristics of both Asperger’s Syndrome and ADD.

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This is a three part series on managing unavoidable social situations. In my case it was due to a death in the family, but situations often arise where extended social interaction becomes an obligation. These essays reflect on how I used my toolkit of coping mechanisms to make the most of the situation.

 

Recently tragedy struck our family, and we witnessed the passing of a close family member. My wife and I found out on a Thursday, and a few hours later we were on a plane to Detroit. Little did I realize that this would mean interacting with a large extended family that I had never met before.

It usually takes multiple interactions before I become comfortable around someone new as it takes a while to process all their mannerisms, expressions, intonations and associate them with the words they are using.

Until then the sheer volume of data coming at me coupled with the uncertainty of the interaction is overwhelming, and I tend to clam up like a mute. It’s much too difficult to parse multiple simultaneous conversations while also participating, so I end up focusing on observation and rudimentary matching of the tone (e.g. laugh when others laugh and hope I stop when they do). I store all this knowledge for later use, which usually takes a while to recall. Sometimes it can take hours if I’ve been deeply focused in another activity. Speeding up this process requires priming my brain in advance to respond accordingly. Without this priming, my interactions are noticeably awkward and my speech stunted. This happens all too frequently, causing lots of gaffes and other awkwardness.

My own issues notwithstading, my wife was in no condition to socialize, meaning that the burden of building rapport fell to me. Remarkably I was able to blend in for three full days of socializing with some 15-20 extroverts. About half of this time was in a hospital, which is not a pleasant sensory environment.

Quite a feat for someone that typically interacts for 2-4 hours per week with people (other than my wife).

How was I able to accomplish this Herculean task? Largely it is thanks to the large toolkit of coping devices I’ve developed. This stems from the fact that I’m now aware of my peculiar way of thinking and what challenges I face. This awareness was the catalyst for developing tools (with the help of professionals) to temper their effect.While the specific techniques I’ve developed may not work for everyone, I think the framework is generally applicable.

My greatest challenges come in the form of coping with uncertainty, sensory overload, and slow memory recall. Social situations happen to be a confluence of all three challenges. It has taken years to identify these issues let alone the best ways to cope and compensate for them (as well as accept them for what they are).

My toolkit is generally divided into three areas: discipline, reframing and auto-priming, and when necessary, medication.

Discipline is how I describe staying in control and avoiding outbursts, freak-outs, and meltdowns. For me this requires a combination of physical exercise, breathing exercise, and music. The goal is to develop a routine that you can conjure during a moment of extreme frustration or agitation to stay in control. My therapist calls it a “safe place” that you can retreat to at any time. It wasn’t until I really got into ice climbing that I was able to recreate that feeling in my head.

Reframing is a trick I developed in my twenties to rewire my brain. I’m sure psychologists have their own term for it, but as an auto-didact this is what I call it. The general idea is that if you know what types of situations are compatible with you (calming, enjoyable, etc), then you can transform a stressful situation into a good situation by reframing it in terms of things you like.

I suppose another way of saying this is that attitude is everything.

Remarkably you truly can improve your outlook and emotional state if you can find a different perspective that is more compatible with your psychology. Reframing has its limits so it’s not like you can eat dirt and attempt to reframe it as chocolate. But within reason, it can be a powerful device. A complementary tool is priming. In psychology this is used to influence someone’s behavior by recalling specific memories. Usually one person attempts to influence another, but I’ve found the technique works for auto-priming as well. By this I mean you prime yourself for a situation, which prepares you for situations since you’ve “preloaded” the program from long term memory into working memory.

The final tool is more subtle than you might think. Medication takes all forms and serves many purposes. The first is for emergencies when nothing else works. An anti-anxiety drug is an example of this. Less critical situations but still ad hoc call for other sorts of medication like a beer to ease you into socializing. I no longer drink much coffee due to its side effects but sometimes I will drink some if I need to stay alert in a social situation. Notice my deliberate reframing of alcohol and beer as medication? This is because medication is a controlled substance, so when I frame them this way, I’m more active in deciding how much to consume and how often. Another type of medication is continual use substances. Lithium, amphetamines, anti-depressants are all examples. Whether these are right for you depends on the individual. I’ve found some to have no effect whereas others have a profound effect.

Creating a toolkit to deal with social situations requires knowing both your strengths and weaknesses. Once you are able to identify these, then you can draw from the wealth of resources to add the appropriate tools to your toolkit. In part two, we’ll see how these tools translate to practice.

Awareness v. Acceptance: Does It Matter? Article for PACLA Magazine @Aut_Love_Accept

19 Apr
April 19, 2014

I wrote the following article for the very first edition of  Parenting Autistic Children with Love & Acceptance (PACLA) Magazine! If you haven’t visited PACLA before, head over and check them out on Facebook and follow them on Twitter @Aut_Love_Accept. Being April, Autism Awareness ACCEPTANCE month, I thought I would share a little more on the subject, this time with a huge shout out to PACLA for all the great work they do!

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Autism Acceptance

What does it look like exactly: Autism Acceptance? Awareness has always been the headliner, but honestly I think we’ve moved well beyond the whole, “This-is-what-autism-looks-like-so-be-aware” campaign. It has to be about acceptance now.

Accept – to receive willingly; to give admittance or approval to; to regard as proper, normal or inevitable; to make a favorable response to; to recognize as true

When I look at those definitions, all pulled from Merriam-Webster’s, the two that resonate with me are ‘to receive willingly’ and ‘to recognize as true.’ Now consider those words in conjunction with autism. When we advocate for autism acceptance it is because we want to be received willingly and recognized as our true selves, just like our non-disabled peers.

Autism acceptance means you accept the entire person as they are: boy, girl, tall, short, silly, serious, graceful, clumsy, stimming, still, echolalic, non-speaking, special interests, disinterest, contentment, meltdowns, etc… the whole person. Life is not a salad bar you don’t get to pick and choose. It’s all or nothing, every strength and weakness, every success and failure… everything that makes us who we are. Just as you would with our non-disabled peers, because like them…

Everything about us makes us who we are.

  

Old News

This whole milestone check, striving for ‘normal’ and comparing children with one another is an outdated and damaging concept. I’ve asked professionals before why they would compare my disabled children to non-disabled children, only to be met with a blank stare at my perceived ignorance. My guess would be their incredulity at me not wanting my children to be ‘like everyone else.’ Don’t I want my kids to fit in? Don’t I want to take whatever measures necessary to help them blend? What I believe they are trying to get at is whether or not I want to condition and reprogram my children so society will not know they are, dare I say it… different.

Uhm… No thanks. We’re all good here.

If you continually chart the progress of Autistic children using non-Autistic measurements and goals, they will generally miss the mark (or score off the charts). And this is not because our children are incompetent or not capable of success but because the odds are stacked against them. Why? For the very same reason non-Autistic kids would miss the mark if measured by Autistic standards: We are made up of two very different neurologies. We experience things – thinking, learning, feeling, interactions – too differently to be ‘samed’ with non-Autistic peers.

 

For the Love of Neurodiversity

Including me, there are four disabled people in my family of five, three of whom are Autistic. The idea of ‘normal’ with its bland soullessness is a joke in our home. It’s what we strive not to be. We are fortunate enough to find ourselves in a time where neurodiversity is an acknowledged concept – by the folks in my community anyway – and that an internet search of the Neurodiversity Movement will come up with 236,000 hits. It is exciting for me to share this information with my kids exclaiming, “Yes! That’s it! That’s us!”  We are not defective, damaged or disordered.

We are neurodiverse!

 

Enter PACLA

I’ve only used social media for a little less than a year. I’ve always been scared to death of being that exposed to people. However, once I got into it, I was hooked. I met so many Autistic people and our supporters via Twitter and it was beautiful! I was never judged or ridiculed, I have been corrected a time or two, but I always own my ignorance and am thankful to learn from it. Twitter was so welcoming I decided to try Facebook (FB) a few months later.

I actually found PACLA by accident a few months ago through another FB group. I am not in many groups because I find the FB interface makes me anxious. The graphics are overwhelming and I find that I can’t follow threads very well because my brain tries to take in everything at once: Private messages, threads, ads, requests, pokes, etc… It feels as if I’m in a room and I have ten different people talking to me on ten different topics and they all want ten different answers right away! It causes tremendous anxiety at times. I often think that I’m glad no one can see me considering a meltdown from looking at a computer screen!

But that’s not what this article is about. This is…

I am an autism acceptance advocate and when called for, activist. While autism awareness continues to be the loudest voice, I generally avoid the groups that focus on it. In addition, I want a group with an Autistic voice. I’m not saying all moderators have to be Autistic but there has to be some. Oftentimes it’s actually non-Autistic people doing the talking about us with little to no Autistic input, and that will never do…

Nothing about us without us!

Don’t misunderstand me, there are a great number of non-Autistic people whose support I am grateful for, but we also have a great number of Autistic people that need to be heard and PACLA provides a platform to share.

 

PACLA’s Commitment to Autism Acceptance

PACLA is a safe space where Autistic people are respected, their perspectives valued and their personal experiences appreciated. The gorgeous banner that heads their FB page reads:

  • Functioning Label Free Community
  • Autistic Safe Space
  • Identity First Language
  • Pro-Vaccination
  • Anti-Autism Speaks
  • Anti-Compliance Based Interventions
  • Anti-Cure
  • Pro Autistic People
  • Pro Disability Rights
  • Pro Presumption of Competence

I think that is one of the most beautiful things I’ve ever read. I only wish I had read it sooner because PACLA offers something rare:

Actual Autism Acceptance!

The real deal! I’ve seen FB pages, support groups and organizations advertise with pride their commitment to autism acceptance only to read about:

  • Early interventions/intensive therapies that work to eliminate ‘Autistic behaviors’
  • Using functioning labels and other medical model language to refer to Autistic people
  • Loving the child yet hating the child’s autism
  • Stories of people ‘overcoming’ autism
  • Tips, tricks and diets that alleviate ‘autism symptoms’
  • Surviving as parents of disabled children
  • Language that describes us as suffering or as victims

Nothing from that list supports autism acceptance. It doesn’t make me feel good about how these people view my kids or me. Reading those words doesn’t make me feel accepted.

Pay attention to language, if you’re seeing mentions of cures and thread after thread of how unbearable life is as an ‘Autism Parent,’ you are not in a group promoting autism acceptance no matter what they advertise. I’m thankful FB wasn’t around when I was a kid. Hypothetically-speaking, I can only imagine I would have been heartbroken to think my Mom spent her days talking very openly about how difficult life was because of me and even worse, that everyone was reading it!

I would not have felt accepted.

 

Awareness v. Acceptance: Does it Matter?

Yes, it does. Awareness lets us know that something exists, which is fine if you’re introducing something new. But we’re not and this is no longer about being aware of autism, but being accepting of Autistic people. Autism acceptance is a concept of entirety with many facets and layers and dimension. It is wrought with feeling and emotion, knowledge and ignorance, and most importantly with…

LOVE

True acceptance is about loving a whole person and everything about them. I was a late-in-life diagnosis, self-diagnosed at 37 then professionally at 39. At 41 I found the autism community online and it felt like I was home. Never in my life had I found anyone I could really relate to and not hide my true self from. Not even my family. And then I found hundreds on Twitter, FB, and through blogging. It’s been the most liberating experience of my life.

I grew up undiagnosed and it was difficult. It was decades of feeling lost, confused, scared and angry on the inside while maintaining a perfectly happy facade. My children know they are Autistic and are happy to be so. They understand they need accommodation so they can be successful, but they also understand these accommodations are necessary and deserved.

They know they are loved and accepted just as they are.

Autism acceptance is about letting go of what the majority says is right or ‘normal’ and having the courage to love unconditionally. It’s taking a step back and realizing your child loves you as you are, no matter what, because they are born doing so. As parents we need to do the same. Society hasn’t stepped in yet to dictate your child’s perception of you so don’t let an ignorant majority dictate your perception of your child.

It’s time to turn away from societal expectations of normalcy. And well past time to show our children (all Autistic people) that they are right and beautiful just the way they are. It’s time to be received willingly and recognized for our true selves. It’s time for…

AUTISM ACCEPTANCE