Saturday, November 2, 2013

Autistic person speaking

Rainbow Goddess writes "Autistic person speaking" on Purple Aspie: Life on the Spectrum.

It is a well written account of going to an autistic conference where auditory sensitivities were not even accommodated, and the issues that she had throughout the conference.

Please Read!

"So you mean you're an engineer?"

The MoUsY spell-checker writes "So you mean you're an engineer?" on tumblr.

As an electrical engineering graduate who works on the railway and is known in the office for IT skills, perhaps it is a bit ironic that I participate in Autistics Speaking Day. If my job isn’t stereotypical, I don’t know what is.
This one response I got when I tried to explain what it means to be autistic says it all:
“So you mean you’re an engineer?”
Way to be dismissive. That’s like saying “but you don’t look sick”.
In the context of the original conversation, I was trying to explain what it means to be autistic, and received such a response when I mentioned communication difficulties.
Yes, poor communication is a common problem amongst engineers, and there are probably quite a lot of engineers who are on the autism spectrum. Perhaps the stereotype allows me to “pass” as allistic because my communication difficulties are then excused as being typical for an engineer. (The concept of “passing” is a complicated issue in itself.It still doesn’t make it right to conflate my neurology with my occupation.

Shared and Different Voices

Jodie Gray writes "Shared and Different Voices". Trigger Warnings for abuse.

When I first found out about an autistic community made of Autistics adults, children, and teenagers who were actively involved in speaking for themselves and about their own lives - I was thrilled. I thought that this community held very many similar beliefs with each other, that the community was good and supported each other. I must admit that at this early time perhaps I even held a false truth that all autistics were great people. I mean I knew that Autistic people spoke in different ways- sign language, body movements, writing, typing, screaming, singing, talking, and others. I knew autistic people came from all different racial back grounds, and of all different religious beliefs. I believed out of some false hope that this community was without fault, and with acceptance for everyone in it.

Autism on TV isn't always done wrong

Catsidhe posts "Autism on TV isn't always done wrong" on LiveJournal. Warnings for spoilers, and Trigger Warnings for violence, murder.

Overload is a feature of autism, to the point were I would talk about how my autism interacts with my circumstance, but there is so much going on that I find myself unable to extract any particular thing to discuss: the forest is so big, I can't describe any trees.

So instead of talking about that, let me talk about television.

There are autists on TV, even if their attributes are usually inconsistent and subject to plausible deniability by the show's writers. That is: it doesn't matter how obvious that the traits are, the writers will deny that the character is anything of the sort. Presumably so that they can explain away any mistakes they make.

Still, there is Sheldon Cooper, and Temperance Brennan, and Data, and (I'm told) Abed Nadir.

Characters in historical features, however, are more difficult to nail down. Not least because the assumption seems to be that, in accordance with Age of Autism dogma, there weren't any autists before the 20th century.

Which is, of course, ridiculous.

Historical autists who could feign normality, or were in circumstances where they could function, were just folks who were odd. Autists who could not function were "idiots", and typically ignored in the records. If they lived that long.

There's a good argument that Fitzwilliam Darcy was on the spectrum, given how he was described as acting stiffly and formally, and abnormally so even by the standards of the time, but hiding behind his demeanour a rare kindness and sensitivity.

Sherlock Holmes, for different reasons, as well.

But as far as it goes, that would seem to be that, unless you include the archetypal absent-minded professor. And even that is typically a trope in its own right, and with only tangential connection to autistic traits as is typically presented.

And then there is Miss Fisher's Murder Mysteries, series 2, episode 8: "The Blood of Juana the Mad".

Spoilers and potential triggers ahead

When autistic people speak their truth, just listen

PK writes "When autistic people speak their truth, just listen" on Walkin' on the Edge

My son was diagnosed 2 years ago at the age of 4. I was aware of autism and read about it mostly through Temple Grandin’s books. I had seen Rain Man back in the day, and the Temple Grandin movie most recently. For someone whose life hadn’t really been directly touched by it, I was reasonably well educated about it, but I didn’t (and still don’t) LIVE it.
Some people may say, “of course, you LIVE it, your son has autism!”. Yes, he does. He is autistic, and he has some challenges that we deal with. We are “lucky” in that he is very verbal, academically proficient, not sensory-sensitive. Our lives are pretty much like most neuro-typical families – so far. I worry about what will happen as he gets older, as social situations get more complex I fear he will be bullied. Even though he communicates well, he thinks differently, and I hope he can process things and let me know if something is troubling him. I watch his social interactions and I see the difference, the “other-ness”, and I know how people can be when you’re “not like them”, especially in school. But I think these are worries that MOST parents have, and are not just the worries of an “autism parent”.
But I don’t LIVE the autism experience. My senses aren’t constantly assaulted in every-day situations – I can filter out most noises, smells, etc., unless they’re over-the-top annoying. I generally can interpret body language and facial expresson. Eye contact doesn’t flood my brain with information that I’m unable to process quickly/effortlessly. I am aware of where my body is located in space. I am aware of how my body feels inside (pain, discomfort, sick, etc.). I can regulate my emotional states pretty well. MY stims (nail biting, hair twirling, nail-polish-picking) might not be considered polite, but they don’t get stares. I understand the non-literal nature of turns-of-phrase/figures-of-speech and the BS chatter of small talk. Every day isn’t a struggle to deal with an enormous amount of input, above and beyond the general experience of living.
The only reason I know this, is because I’ve read autistic voices: The Loud Hands AnthologyAutisticookInvisible StringsIncipient TurvyKarla’s ASD Page (Facebook), Aspergers and MeA Stranger in GodzoneTemple GrandinThinking Person’s Guide to Autism. Their experience is not mine. Their experience is not even the experience of my autistic child. But in no way, shape or form does that lessen the truth of their experiences. In my blog travels, I have read reactions of parents who say “but my child isn’t like you – can’t type, can’t blog, doesn’t live on their own – so you can’t speak for them” - and what I (and the autistic people who are sharing their stories) get from this is “If you are not as visibly impacted as my child, you are ‘not autistic enough’ and your experiences don’t matter”. Never mind that the blogger commenting ISN’T verbalDOESN’T live on their own  – these people generally jump on the defensive and don’t take any time to find anything out about the autistic person they are dismissing.
And to their defensive reaction, I call Bullshit! Since when does pain have to match to matter? Since when does one person’s experience make another person’s experience less valid?
Then there is a myth that autistic people lack empathy - which I know from personal experience with my son is false (perspective taking, maybe, but empathy? – no way). Again, I call bullshit – since when is a lack of empathy an “autistic thing”? Neurotypical people lie, cheat, steal, kill, abuse, bully, and otherwise treat people like crap all day, every day – but somehow lack of empathy is an “autistic thing”?! Give me a “socially clueless” autistic person who misreads cues and unintentionally upsets me over a neurotypical person who is deliberately screwing me over for their own gain any day of the week.
So if you know someone who is autistic/aspergers/”on the spectrum”, or someone who knows someone, and if you want to expand your horizons and maybe make the life of someone who is autistic a little easier – READ THEIR WORDS. You might be made uncomfortable by what you read, but growth hurts sometimes - that’s why it’s called growing pains.

Why I speak

rattiepuff posts "Why I speak" on Portrait of An Alex . Trigger Warning for stim suppression, ableism, abuse

Why I speak

People Like Us

Jennifer Hughes writes "People Like Us". Trigger Warning for ableism, murder of autistic people.

[Note: This piece was written for Day of Mourning as a speech (opening remarks for the NYC vigil) but never delivered (because of technical difficulties in accessing the text when it was to read, not because I didn't want to deliver it). I've sort of been sitting on it ever since, for various reasons. Autistic History Month seemed like the perfect time to finally share it, but be warned that it focuses on a very dark time in our history and how it wasn't as isolated as our society might like to think.]

Friday, November 1, 2013

Being Myself

"Aspie Kent" posts "Being Myself" on Aspie and Allie: Autistic and Allistic couple, dancing through life together.

For perhaps the first time in over forty years, I am being myself. I am taking a break. Pausing for a few hours, and just being me. Setting aside the exhausting work of trying to be the person that my allistic acquaintances expect me to be.
You see, I’m autistic.
I’m successful in my work, I’m the father of two wonderful children, and I am autistic.
I’ve spent most of my life trying to fit in, but until recently, I didn’t really understand why I’m
different. I’ve struggled to understand what people mean when they say things that don’t make sense to me, and I’ve agonized about trivial misunderstandings for days. I’ve gone to unimaginable extremes to avoid conflict, because in conflict I fear that my differentness will become a weapon to be used against me. I’ve thought and thought about things that many people would probably consider trivial, yet thought nothing about things that they seem to worry about a great deal.
And this past summer, I finally learned why.
Because I am autistic. My mind works differently.
In order to succeed, I’ve spent most of my life subconsciously compensating for the ways that my mind works differently. I’ve tried to behave like the many non-autistic people with whom I must interact. Ignoring the odd looks and blank stares at my failed jokes. Counting everything I see, absorbing patterns, getting lost in details. Struggling with words and feelings, experiencing powerful emotions but not knowing how to describe them or react the way allistic people do.
And yet, most people I know would not recognize me as an autistic person.
Eccentric, weird, aloof, or perhaps even reclusive. But not autistic.
Because I have unknowingly worked very hard to hide behind a caricature of myself. An allistic version of me. A facade. A fake.
The real me, the autistic me, has been here all along. And it feels good to be able to drop the charade, to just be myself.
Until I have to leave the house again, when I will put on my mask, slip back into character, and try to blend in with the alien expectations of this strange world that is my home.
For the time being, I am myself. I am relaxed, and comfortable, and enjoying some quiet time with my spouse. And I am me, not the character I often play, or the person that society expects me to be, but my happy, eccentric, autistic self. And that feels good.

My Value: Autism, Feminism, and Poverty

Bridget Allen writes "My Value: Autism, Feminism, and Poverty" on It's Bridget's Word.

There is a dollar figure attached to my right to exist. Do not tell me it is not there. That is a lie. I see it every time I look in the mirror as if tattooed on my forehead. There exists a ledger; a balance sheet of what I contribute and what I take.

Intangibles count for nothing.

Joy counts for nothing.


Every op ed piece I read defending food stamps or other benefits bend over backwards to point out the majority of recipients are employed. The majority are good people. Good people work.

But I do not work. I am autistic, and being the autistic I am means I am real world, social model disabled. I do not work because I cannot. There are a dozen hypothetical ‘what if…’ or ‘should be…’ scenarios in which I could hold down a job, but that is not my reality.

How much of myself do I have to lay bare for you to accept that work, as it exists today, is a thing I cannot do? I tried, and I had to chose between powering through another year or two that would kill me or come damn close, or admitting I cannot so my children could grow up with a mother.

My childhood was infused with a popular feminist theme. I was taught that a Real Woman is financially independent. She doesn’t need a man be it a husband or larger entity (The Man) to support her basic needs or the needs of her offspring. A Real Woman knows children are an accessory to a career, not something one builds a life around. I regularly heard the words “housewife” and “brood mare” used interchangeably. I am loathe to believe this is real feminism, because empowerment that exists on the denigration and neglect of other’s needs empowers no one.

Growing up, I was also told over and over again my worth was tied to doing Great Things. That lesser people lived ordinary lives, and that for me to live an ordinary life would be tantamount to complete failure. In order to be a worthy human, I needed to be financially independent while actively improving society. Nothing less would do.

So do I own my complete failure, or do I redefine what it means to do Great Things? I embrace both, which yields a very messy work in progress.

I started to apply for disability once, but every worker I spoke to asked some the same question: if you are too disabled to work, how can you be a fit mother? I was told, repeatedly and in no uncertain terms that if I submitted an SSI application, a Child Protective Services investigation would be in my future. That is not a risk I could take. My children need me. I know this as much as I know anything. I am the best possible mother on earth for those particular children. That is not negated by my sometimes inability to speak, or walk, or work.

I cannot do it, and I am sick to my teeth justifying myself on this. I had to justify my dirt poor, EBT dependent self daily. Now I am privileged enough to not be poor. Now I am loved unconditionally for exactly who I am by a partner who can work, but I refuse to hide behind that veneer of acceptability. I cast off strangers’ easy assumption that I choose to stay home. If I could choose, I likely would stay home, but I don’t really have that choice. I’m too disabled for gainful employment, and it would be a slap in the face to too many people I respect to fake that.

So here I sit, grateful for the privilege of things I still do not take for granted. Indoor plumbing on demand. Food my children can actually eat. Health insurance, and the ability to make copays. But all those privileges; privileges that should be rights, do not make me a better person than I was when I bartered baked goods made with food stamp purchases for enough cash to make sure my cancer was still in remission.

I am just as autistic,
I am just as disabled, and
I am just as valuable.

Autistic Vloggers and Autistics Speaking Day- LAFA

khawkgirl presents "Autistic Vloggers and Autistics Speaking Day- LAFA" on her YouTube channel Life As a Feral Autistic.


Savannah Logsdon-Breakstone posts "Impact" on Cracked Mirror in Shalott. Trigger Warnings for mentions of murder, attempted murder, and ableism; internalized ableism; suicidal ideation.  

This is a difficult post to write. It’s always difficult, of course, to touch on the subjects of murder and ableism, and on how they are excused. It’s more difficult to talk about the impacts in personal ways, ways that are your own lived responses and realities, rather than as abstracts. There’s a distance to the abstracts that keep you feeling safe, even though you know you aren’t. And this doesn’t even account for the risks that writing about those impacts can have on you personally. It is, plainly, all around difficult.
As a child and teen, I mainly just shrugged off these representations as I heard them. They may not have been as prevalent in the media I consumed, but they were, as they are today, “normal” things to hear. But just because something is de rigor doesn’t mean they are truly forgotten at all, even when they hold no special importance in the moment. Those words and memories are still in there, waiting for another train of thought to hook into them and pull them to the surface. It might be later that day or a decade away, but when you fish for something to carry you out of distress, sometimes you hook a poisonous fish instead.

Speaking from the shadows

Nightengale writes "Speaking from the shadows" on LiveJournal.

I was debating whether or not I should say anything for Autistics Speaking Day this year, because most of the time, I’m not speaking out as an openly autistic person. A few people know at work and in the community, but in most cases when I speak about autism at work or at community events, I do it without disclosure. And so I wonder if I’m a legitimately speaking autistic in the spirit of Autistics Speaking Day.

But I’ve decided to speak out. And specifically, I’m going to speak about the three reasons I’m not openly autistic at work and in my community, things I’m afraid would happen if I were. Things I have legitimate reason to fear, based on current available evidence. My fears are that I would be disbelieved, professionally discredited or tokenized. 

Please Read the rest on Nightengale's original post. 

Finding My Voice

Bird Gardener writes "Finding My Voice" on Take a Left at the Moon. Trigger Warning for forced hospitalization, some bullying, medical discrimination.

I wasn't diagnosed as Autistic until I was in my thirties. I was always a bit different than other children (okay, a wee bit more than a bit). I spent much of my "social" time with others in awkwardness and misunderstanding. I preferred to be alone. I was highly sensitive to light, sound, touch and scents. I had this capacity for feeling far too much and was often told I was too sensitive and that I needed to toughen up. I was ridiculed and teased, bullied and beaten up frequently for being different. I didn't have many friends. I had neighborhood "friends" who I played with during the weekends and after school at times but they never socialized with me at school. Much of the time I spent watching them play and listening to them talk. I would play next to people not necessarily with them. 

I didn't have a good friend until third grade. She was different too. She was not one of the popular kids and she was often ridiculed and teased as well. We were fringe kids. We didn't participate with the majority of the groups and never fit into any cliques. We bonded over our "differentnesses". 


Queerability has submitted their entire blog, with many awesome and informative posts about disability issues and intersectionality. Very excellent materials.

How Am I not Myself

Jasun Horsley writes "How Am I not Myself", published on Omni Reboot.

This exploration of Philip K. Dick’s neurological condition and potential autism is an edited version of a longer essay, taken from a book-in-progress about neurodiversity, culture, technology, and “extra-consensual perception,” by Jasun Horsley. The full, unedited, piece can be read here.

Philip K. Dick was a sci-fi prophet, among the most prescient science-fiction writers of the second half of the 20th century.

Among other things, he recognized that not only would technology provide us with the opportunity to expand our ideas about reality and ourselves—it would force us to do so. He foresaw that the opportunity of technology was also the crisis of technology, and that this crisis was not merely social, but existential, or even spiritual.

Less remarked upon—but in many ways more remarkable—is the way in which Dick’s fiction explored alternative forms of human consciousness, human reality, and human individuality. These explorations have have nothing to do with technology; rather, they present a biological crisis-opportunity. Which is to say, several of his novels involve a form of innate psychism possessed by a small minority, a mutant strain viewed either as a threat (crisis) or as a resource (opportunity) by the controlling powers.

While Dick’s worldview has long been described as “schizoid” (even Dick sporadically described himself that way), the word “autistic” has rarely, if ever, been attached to him or his work. This strikes me as a peculiar oversight. By my reckoning, Dick was the first writer to consider the psychic implications of autism in a work of fiction, or anywhere else.

The Book I Read: Jonathan Lethem’s Infinity Loop

Jasun Horusly posts "The Book I Read: Jonathan Lethem’s Infinity Loop" on Auticulture.

Here’s a review I wrote for Amazon (here).
I was surprised to see so many negative reviews of this book. What’s not to like? At one point Lethem remarks that his identification with Fear of Music as a teenager was so strong that you could have placed the album where his head was and it would have adequately represented his inner self. If you haven’t ever felt that way about an album, book, or movie, this isn’t a book you should read. Lethem isn’t doing standard music criticism or cultural analysis—thank God, who needs more of that?—he’s exploring the strange liminal zone between his own psyche and a rock album that got so deep under his skin (like Byrne’s air) that it had a hand in forming it (his psyche).
But then, some people don’t know shit about the air.
For Lethem writing this book, everything seems to be up in the air. That’s the point. Lethem can’t tell where Fear of Music ends and he begins, or vice versa, and the reader isn’t supposed to know either. And it comes directly from his heart to you. What Lethem can do as well as any music writer I’ve ever read, however (as he also showed in his novel You Don’t Love Me Yet), is describe musical progressions and effects in coherent language that somehow captures the essence of music and meaning, that merges forms, creates prose that sings the praises of songs that narrate, so the music and the analysis get together, load their trucks, burn their notebooks, and change their hairstyles. This is one of those abilities that mystifies and humbles me: I don’t know how Lethem does it. I can only absorb it admiringly and, as with great music, enjoy its ineffability and my own incapacity to understand how he does it. Ironic, because Lethem’s Fear of Music is kind of about that: Lethem’s still-adolescent fumbling, joyful, jerky, melancholy, intense, searching, desperate, weary and inspired attempt to come to terms with his inability to understand Fear of Music and, at the same time, his inability not to at least TRY. Maybe that’s why some people didn’t like it? Too naked, too honest, too raw—like Fear of Music the album, Fear of Music the book offers no comfort or solace besides the comfort and solace of forgoing comfort and solace: “I ain’t got time for that now.”
Fear of Music has been my favorite album for thirty years. My favorite song was Heaven, which is about a bar where they play your favorite song, all night long. (How’s that for an infinity loop?) I had never read anything else by Lethem before I read his little book. It did not disappoint, which in itself is about as likely as a party where everyone leaves at exactly the same time. Lethem writes like a building on fire, like he’s flat on his back, with no regrets, like he’s a little freaked out, like he’s charged up, like he’s got it figured out, like he doesn’t know what he’s talking about, like there’s a party in his mind, like he’s inside a dry ice factory.
It’s a good place. He gets his thinking done.
This is the book I read.

Autistics Speaking Day 2013!

Rayn posts "Autistics Speaking Day 2013!" on Trigger Warnings for lyrics that describe oppression, violence. (If the music doesn't play properly here, it is available on the original post, so see link above)

In honor of Autistics Speaking Day, I would like to share with the public some of my music, lyrics, performances, and videos as a Hip-Hop artist on the Autistic Spectrum. My involvement in Hip-Hop music stands out as the single most important factor involved in helping me to build the confidence I required to start fighting back strong against my severe social phobia, and finally begin publicly expressing myself as an Individual – from music networks, to social networks, to the stage and live audiences, to my very own website!

An Autistic Social Issue: Dismissal and Disrespect

Steve Summers writes "An Autistic Social Issue: Dismissal and Disrespect" on Autistic Aloha

November 1st is Autistics Speaking day. Please listen to us and speak with us.
I dislike dismissive and disrespectful behavior. I feel disrespected when someone acts like they are too busy to talk, and they barely speak with me. Then, when a Neurotypical (NT) person shows up, they have a lively conversation with that person. It is as if they don’t think that I will notice the difference in their attitude toward me (the Autistic guy) and the NT person. It is as if they think that I am not paying attention or they bought into the incorrect stereotype that “I am in my own little world.” I have news for those people, I notice much more than they think.
Everyone deserves to be treated with dignity and respect. It is ignorant for people to treat other people as lesser beings or less than themselves. Usually, truly smart people understand that they don’t know everything and that they have a lot to learn about life and others. They don’t parade around an attitude of smug superiority. They don’t dismiss and disrespect other people. We are all human. We all deserve respect and dignity. Unless, of course, someone unapologetically mistreats other people, then they forfeit that right. Rude, hurtful people forfeit the right to receive our respect.
We need more Autism Acceptance. We really need more acceptance for all people with disabilities and/or differences. We need people to treat us all as equals. We may be different, but different is not “defective.” Different is not “wrong.” Different is not “less.” Our differences do not excuse dismissive or rude behavior by others. We deserve the same respect as anyone else.
Photo quote: Treat everyone with politeness, even those who are rude to you - not because they are nice, but because you are. ~ Author Unknown

Autistics Are Speaking

Amy Sequenzia posts "Autistics Are Speaking" on the Autism Women's Network

* Autistics are speaking because we know it is our right.
Autistics are speaking because the silencing of autistic voices needs to end.
Autistics are speaking because it is time for non-autistics to listen.
Autistics are speaking because we know we have civil rights and we will fight for them.
Autistics are speaking because we are many and we communicate in many different ways.
Autistics are speaking because WE CAN.
Autistics are speaking because being silent is being compliant with oppression.
Autistics are speaking because we grew up and we found our voices.
Autistics are speaking because we want young autistics to always believe their voices count.
Autistics are speaking because we are here and we want to be heard.
Autistics are speaking because silencing us is not an option anymore
Autistics are speaking because it is Autistics Speaking Day.
* Because we speak every day!

We're All Awesome

Joe Andrew Campos writes "We're All Awesome" on Autistic BigBro

Yep, you heard me. We’re all awesome.
Autistic self-advocacy is on the rise, and it has built a significant ground in other countries, particularly in the United States. Here in the Philippines, though, autistic self-advocacy is a movement that we autistic Filipinos can take advantage of in pushing for our rights and acceptance. And I would like to share some of my ideas with the autism community, and hope to inspire others to follow suit.
I was in this two-day autism conference, where I attended with two hats: the organizer’s hat and the self-advocate’s hat. It was where such topics as the DSM-V, the issue of stem-cell therapy as a purported treatment for autism (don’t get me wrong–I loathe autism cures), diverse therapies for autism, and others have been discussed.
There was a part, though, that I love. This was a part of the conference where some awesomes (a name I gave to my fellow autistics) sat down in a panel, and told everyone inside the hall their life stories on how they cope with challenges that they face in daily living. The demographic was diverse: a singer, a wishful actor, a teaching assistant, and an office professional. Their stories were inspiring enough, but what inspired me even more was the fact that otherawesomes are inside the same hall, waiting to be discovered. And so, when it was my turn to speak at the forum, I motioned every autistic individual to stand up. In a sea of parents, teachers, therapists, and other neurotypicals, I was amazed at those who stood up and showed themselves to the people in the hall.

a bright light jolted Aanteekwa awake

Nicole Nicholson submits "a bright light jolted Aanteekwa awake" on Raven's Wing Poetry.  Trigger Warning for poetry depictions of sensory issues and stim suppression.


Kelly Green writes "Convergence" on

We can go there!!!
We can go there!!!
We love this word at ! It is precisely what we have been wanting! All roads leading to understanding of AUTISM. No more traveling alone in the dark. Instead a complete sunrise of Autistic information coming to light. Not the tired and isolating bombardment of so-called Autism facts that have been repeated from the past. But, a NEW convergence of Autistic people and their families with differing opinions about the seemingly obvious. International internet discussions #hashing it out so to speak!  Not the same old rhetoric brainwashed into people through lack of Autism knowledge, fear and/or oppression. A new look at Autism through the experiences of Autistic people discussed with mother’s, fathers and teachers of other Autistic people. Families and friends understanding more deeply what these shared opinions, experiences and emotions can teach us to better support future generations. What benefits we all gain from these experiential thoughts about relationships that can and do resolve and relax many “issues” surrounding Autism for us. Going to the core and source of a thing is a powerful place to go.

Listening to Autistic voices about Autism...priceless.
Listening to Autistic voices about Autism…priceless.

It is not an easy transition. Learning, carefully considering, and accepting a whole new dimension to the world you already know is a monumental thing. Monumentally life changing for you, your child and family. It is not an easy learning curve and can sometimes seem harsh. The clashing of presumed beliefs with the eye opening beliefs of others can be shocking and at first, evoke extreme dismay. Rocking the proverbial boat of beliefs is not always safe and feeling safe is one of the most important human needs. Utterly essential for Autistics. Throughout history, great change has never been safe. Wars between countries over rights to land, race and religion will undoubtedly never cease. The change we seek within the Autism Community should not feel like one of these eternal wars among countries. That is not safe space for any of us. We seek a safe haven within our own families first and foremost. We also seek this stability in our schools and communities rippling from there out into every society. Our world needs to be a world of practical understanding and grace allowing the freedom to proudly be who we are in a neurodiversly aware society.  AUTISTIC PEOPLE are an emerging culture with rich history and amazing information to share. If we don’t tap into our own best resource internally as a community …then who else will? We must lead by example!


Let’s realize we are much more powerful  respecting Autistic adults opinions and experiences. The Parents in the community need to fight for the Autistic perspective to help re-vamp all systems in every community! Parents need to spotlight and promote Autistic adults within our Autism networks and support systems. We firmly believe a systematic engine overhaul is needed in order for everyone to handle their own unique AutismHWY clearly and safely!  The driving force of new information must come from within the heart of the machine itself. From:Autistic minds. Let’s tap into this awesome, highly vibrational and sometime combustable energy. Allow Autistic adults the opportunities to tune-up and rebuild the correct Autism messages for the rest of the world! When this happens we will truly be off to the”proverbial races!”

                                                        We can do it…!!!

Regression. Does it Really Exist?

Alexandra Holt posts "Regression. Does it Really Exist?" on Suburban Mamma

Something that I feel quite strongly about in regards to ASD, is the idea of “regression”. The notion that a child will begin life in a “typical” way - smiling, making eye contact, interacting with others - before one day, suddenly falling down the autism rabbit hole never to be seen as a whole person again.  A shadow, somehow, of their former, promising, supposed-to-have-been, self.

I reject this. And I will explain why.

Autism Spectrum Disorder is a very complex thing. There are certain things that autistic people struggle with innately, and certain things that autistic people do brilliantly. We are, simply put, different.

Changes and struggles are a normal part of ASD. It is not necessarily a regression from NT development.


We need to remember that autism is different. Ups and downs are normal. Sometimes, autistic people one day just suddenly feel different. Nothing necessarily caused that; it is just what autism is. It is still a relatively unknown territory, science-wise.

When my children were babies, I saw them struggling when they were tired. They didn’t like to be in restaurants, they didn’t like to go to strangers and they preferred to smile at them from the safety of my arms. They didn’t want to sleep alone, they didn’t like the textures of certain foods, they gagged at the smell of the salty seaweed at the beach, and they gagged if I went into a public toilet to change their nappy. They sat at the shops, in the trolley or in the mei tai or in the sling, staring at the shelves, eyes flicking from item to item. They didn’t sit there slobbering and clapping and laughing constantly like the other babies did. My babies laughed. They smiled. They loved. They played. But there was always something a bit different about them. Not enough difference for others to notice. Just things that I noted and that I helped them with. It was information that I used to plan for everyday life, to make their life easier, and to give them the environment that they needed to thrive.

As they got older, they became more aware, and the world became more intrusive. They reacted more strongly, and began to express their dislikes more. They started to have meltdowns when they were overwhelmed, instead of crying and breastfeeding off to sleep, or instead of rushing into my arms and cuddling me to hide. They started refusing to go into restaurants and shops, refusing to go near others, snatching toys from others, laughing when they felt sad, and screaming when they were stressed. They started instinctively responding with aggression and rage when something went wrong. Their speech didn’t develop typically and their communication showed itself in different ways.

So, what happened to my babies?

Well, they grew up. And they changed, as we all change with age. As all children change as they age. They didn't “regress”. They had always been on their own developmental journey; an autistic one. They hadn't begun life as “normal” children with a switch later being flicked that turned them into “autistic” children.

Autism is neurology. That is a big deal. A pervasive big deal.

What concerns me mainly, is the way that autistic behaviours are so often seen as anomalies, as evidence of trouble or worry, as evidence of regression or becoming lost. Autistic behaviour has its own path, and we must respect it in its entirety, and for precisely what it is. It is normal autistic development. 

And normal autistic development may look something like this….

When I get into a situation and realise that, for whatever reason, I cannot translate a skill that I do have (or that I did have or that I thought I had or that I had used successfully before) into the situation, it really sucks. When I wake up some days and can barely function in the NT world, that sucks too. Sometimes, I just have something else that is taking up my energy, and my other abilities are just dormant for the time being. It is hard, and it can be frustrating to have that happen. 

However, although this is frustrating, it is also normal. I am autistic and that is just what happens. It has happened to me for as long as I can remember.

It is not as simple as assuming “regression” and wishing that you could have back the child who you thought you had, or who you wished you had, or who you swear you had just last week or last month or when they were a baby. Your child changes constantly. And those changes are a part of them.

It is also a lot more complex than face value in terms of whether a person is able to do something specific at any give time. There could be any number of other factors involved in that – stress, diet, sleep patterns, sensory environments, hormones, age, relationships, family pressures, therapy overload or inappropriate therapy, social expectations, work load.

Your own perception of these behaviours could be changing to match your own preconceptions too. You might be okay with a 3 year old having a meltdown but anxious that your 8 year old is having one. Your 4 year old might hit when angry but a 9 year old doing it seems worse. These differences in perception are not necessarily your child regressing or getting worse.

There are many things that can impact upon a person’s visible day to day abilities. And there are many things that can impact upon our perception and translation of what those abilities might mean or warrant.

Consider this: You generally don’t hear people grieve for the fact that their NT children have tantrums, or wear nappies in babyhood, or learn to crawl before they walk, or that they need someone else to cook their food for them.  Noone says, “Oh, I love my child. But it would be so great if they didn’t need to wear nappies, or for me to cook their food, or for me to have to wait for them to be able to walk. I wish I could just take the “child phase” right out of their brain, cure it and help them to be more independent.”  Noone says that, because we are all aware that those things are normal for children.  It would be not only disrespectful but silly, for us to say these things. We know that children, and people,develop. We all change, we learn, we grow. We can one day do the thing that the day before we could not do.

We understand and respect their development, their need to be given time, their need to learn about their world. Some people certainly get it wrong, but as a general rule we understand the basics of NT human development. 

So, why are we not more open to the differences of autistic development? Why do we insist upon holding our autistic children's developmental graph up to a NT graph, finding it constantly lacking? Autistic development is just not accepted and respected as a valid development.

Autism is a difference in neurology, and must not be considered an inferiority. The notion of difference being synonymous to inferiority is incredibly flawed.

Many autistic people lead lives requiring high levels of support. Whilst this is a part of the spectrum that differs from other parts; all autistic people deserve for their abilities and selves to be respected and not lamented. 

NT development has its own set of rules and events, its own assets, gifts, and strengths.

Autistic development has its own set of rules and events, its own assets, gifts, and strengths.

NT development has its own difficulties, setbacks and problems.

Autistic development has its own difficulties, setbacks, and problems.

The simplistic notion of “regression” is, in my belief, damaging the right of autistic people to be respected for who they are and for what they can offer.

At the very least, we need to not see “regression” as the simplistic and tragic concept that it currently is.

We must always respect the right of autistic people to be different and to develop at their own pace; a pace that we cannot decide, and that we cannot reasonably denounce. No matter how much they have "regressed".