My Turbulent Twenties

Friends come and go. I tend to lose more friends than I keep. And that is especially true for online friends.  I’d wager that more than half of my friends list on FB has me hidden from their timelines for many reasons. One reason would be that I’m an Atheist, that I criticized religion pretty often in the past, especially in my twenties. At the time I was living on the bible belt and catching loads of shit from so called “good Christians”.  Other reasons are probably that I am pro choice, I believe everyone should be treated equally (lots of debates when it comes to any marginalized group fighting for equal rights), and I cuss a lot. #SorryNotSorry.  Some friends I haven’t minded losing much, while others that I truly cared for left me rather upset with their “unfriending”.  Granted, for a time I was a very angry individual, and I took out my anger in the form of online ranting about religion and other controversial topics. I had nowhere else to place this anger. My twenties were turbulent, to say the least.

In my late teens I grappled with Christianity, trying to find any part of it that made sense to me, that fit me right. It never did. So by the time I was in my twenties I began a sort of spiritual journey, looking for anything that I might resonate with. My early twenties were full of drama. So much drama, in a tiny shit town where no one had anything better to do than stir up shit with others. A relationship that was rocky, at best, ended in my early twenties and it didnt end well. So naturally, as someone as hurt and angry as I was, I began my destructive behavior in real life while simultaneously trying to find meaning of it all online in different communities. I moved back and forth between that shit town in the good ol’ USofA and Iceland, lost in many ways.  I found solace in a specific online pagan community among some people that I felt a great deal for.  While I never really found any religion to fit me at the time, I did find that I was really good at retaining information, cataloging and regurgitating what I learned during online chat debates.  Back then I don’t think I was aware of how the religion part just didn’t sit well with me, not really, and my real passion was the debate.

In my mid to late twenties I realized that I’m an Atheist. I just didn’t believe in the existence of any god. No matter how hard I tried. At the time, on the bible belt, I was also angry and arguing with people about how ridiculous I found Christianity (in particular) to be.  I was very adamant in my opinion of said religious beliefs, unapologetic in my insults.  After some time I did come to terms with my own personal cesspool of shit that made me so angry, and I finally learned how to be tolerant of others religious beliefs, to an extent, at least. By then, however, I had lost a few online friends I really cared about, so my epiphany of tolerance came a bit late. I guess it’s true that even in that sense, I’m a bit of a late bloomer. Such as the rest of my life, basically.  But that is beside the point. My stance is now that while I still find religious beliefs, mainly monotheistic ones, to be utterly ridiculous, I do respect other people’s right to believe in these things. So, I’ve stopped commenting on the posts of those who hold said beliefs, but I do continue to post whatever the fuck I want on my own profile. These days I don’t post much about religion, maybe a joke here or there, but I feel my time is better spent on other topics.

What I consider more important than bickering about religion these days are things like current events, equal rights, and Autism Acceptance.  While I have lost friends from my religious ranting, I’ve lost more due to my political and equal rights posts. Many trumpsters have unfriended me, some of which are “family”.  But I’m fine with that. Anyone who says unfriending over politics is childish doesn’t understand that a person’s political stance is basically what they believe in, how they think about others, what they stand for.  So if my “family” supports a politician that is openly racist, homophobic, sexist, xenophobic, and ableist then they obviously don’t give much of a shit about me, considering that many of said politicians stances would affect me negatively and the rest that wouldn’t affect me I care very deeply about because all people deserve to be treated like fucking people.

So while I was an angry and lost individual I managed to make it through my twenties, alive, despite my very destructive behavior in real life, and have emerged after much self reflection,  in my mid-thirties as one of those pesky snowflake social justice warriors. And that is something I am quite proud of.  Not to toot my own horn or anything, but… toot toot. I’ve come a long way.

So my early thirties were basically me coming to terms with my own diagnosis of Autism. I suffered a burnout at the beginning of last year or so and have found my way back, relatively unscathed. The fact that I’m writing this is a rather large improvement… considering that anxiety and depression left me without any real motivation to write at all. So here I am, working on myself, pumping out a blog post and arguing human decency on Facebook.  I start a program to work with social anxiety next week and I’m actually exercising regularly.  I will be doing my best to continue on this upward climb to bettering myself, my life, and in turn making life awesome for my kids. Perhaps I can get some real advocacy for Autism Acceptance done as well.

Thanks for reading, and remember to NOT light it up blue this coming month of April but wear red instead or light it up gold for Autism Acceptance.

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Autism Acceptance: Listen to Autistic People.

Lately I have been getting rather irritated by certain things in the “Autism” community. I put quotations around the word Autism because I am not referring to actually autistic people, I am referring to those who claim to speak for us.  The doctors and researchers and groups and therapists and other so called professionals that claim to work with autistic people. The idea that they work with us is actually quite laughable, because to me it seems they are working against us in so many ways. And then there are the “autism parents” who are not autistic but use the condition -that is not their own- as their identity somehow while simultaneously yelling at us to stop calling ourselves autistic because we are not our diagnosis.  They push person first language and say we are people and yet treat us like we are less than by speaking over us and ignoring/dismissing us when we do try to speak. They push person first language regardless of the fact that the majority of autistic people prefer identity first. And lest we forget, they also use the dismissal tactic of “there are more important things going on than language”.  I love that one. It’s like they don’t know us at all and yet claim to be experts.  The sheer hypocrisy of it all is absolutely mind blowing. But let’s move on from the infuriating language argument, that is still going on today -as we fucking speak- and move onto my next irritability.

Studies that claim to have found this miraculous piece of information about autistic people when if they had actually listened to us in the first place they would already know it. For example: An article in The Guardian titled A Potential Breakthrough In Care Of Children With Autism basically states that if you are understanding of the child and meet them on their level then behaviors improve. Fucking duh.  This is something  autistic adults have been saying all along. I’m willing to bet that if more of us were actually acknowledged then autism research and services would be more efficient than it is today. This is why we prefer organizations that include us like the Autistic Self Advocacy Network instead of groups that are constantly in search for a cure and refer to us as suffering from autism (cough autism speaks cough).

But, autistic people are such a mystery, yknow a puzzle to be solved, you might say. Well, one way to gain understanding of autistic people, this includes your child, is to ask autistic adults about their experiences.  Before you respond with something along the lines of “adults able to communicate can’t possibly understand MY child because they are too ‘high functioning’,” or any variation thereof,  do try to keep in mind a few simple facts.  One thing, you cannot compare autistic adults to autistic children in ways of skills or ability.  Another thing, you can’t possibly know a person’s struggles through text on the internet. And another, we were once autistic kids, like yours, with more than likely very similar struggles. But the difference between us is rather simple: we grew up.  Over the years we gained skills and experiences, we learned things, we got older and eventually found ways to communicate.  A very important piece of information is that many of us are also parents of autistic kids. That last one seems to be hard for people to comprehend. Very often when an autistic adult will try to communicate their different opinion on a matter then people respond with “well we are parents and we….” making the very wrong assumption that the individual couldn’t possibly be a parent because they are autistic. That, my friends, is called ableism. Always presume competence.

You guys, there is a ton of info out there written by autistic people from all over the spectrum. The best way to learn about a condition is to listen to those who live with it. Because we are looking through the eyes of an autistic person, who better to explain what it’s like? Seriously. Autism acceptance month is nearly upon us and I will be contributing by writing about certain things here in my blog. I have a few in the works already and am always open to topic suggestions. Some will be from the perspective of an autistic parent and others will just be information that is real and worthy of sharing. I do hope you stick around to read them.

We are not a mystery, we are not a puzzle to be solved, we are right here and ready for you to listen.  All you have to do is ask. 

Thanks for reading.

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Searching For Motivation


Nothing. Nothing. Nothing. I sit here and stare at this screen and nothing. So I’m going to write about this nothing. Since I have nothing to write about.

It seems that my physical pain and exhaustion is accompanied by an equal amount of non creativity, non writing, non fucking whatever… and it’s actually starting to piss me off. Is this the next step, then? Because before I just stared and then shrugged and then stopped trying.  My awareness of this lack of interest in things is difficult to describe really. I feel nothing for the things that used to make me feel. My attention is more focused on the here and now, and the here and now is dull. It lacks luster. The only thing I focus on these days is what I feel physically. It’s almost like I can only do one at a time, feel physical or emotional, but not at the same time. But I know that isn’t the case, because I can quite easily be angry while my back hurts. So I know I have emotions. I know I feel them. But the creative feel, the feel or passion for things.. creating. That is so far away from me.

Perhaps it’s like when you need to change the channel, but the remote is on the other side of the room. You cannot reach it so you stand up and walk over to it. But in this case the mere thought of standing up seems like so much work that sitting there and just watching something you dislike seems like the better choice. So sitting there watching something that you are not interested in, you zone out, or go along with it but not really that happily. The story is okay, it moves, but it’s not your thing. Why are you still watching this? Get up and get the remote, change the channel.  I think I might be stuck on a channel I never watch, with shows I never cared for, nothing grabs my attention. I remember feeling at least a sense of wonder about things, happiness even. But these days it’s not coming. And that’s not to say I’m mopey or sad or anything. I could even go so far as to say that I’m content sometimes. But I think that when I am content that is when my creativity fades. I think I have to at least feel a bit of suffering to be able to write like I used to. To be perfectly honest, I’d prefer to feel something bad instead of nothing at all. Is this what depression is like? Well it sucks. While it isn’t exactly fun to feel like one is screaming on the inside, at the very least it is passion, which is something I am severely lacking these days.

So I wrote:

Void. Abyss. Or some other dramatic word. Something that means empty… hollow… absent. Here but not here. There but not there. Moments pass in such ways that are fast and slow at the same time… dragging on and yet once gone I wonder where they went.. how long did that take? Really? It felt like less, even though during it felt like forever. Staring into space, no thoughts. Numbing quiet.

I guess that describes it.  So I think I need to go ahead and stand up to get that remote. Starting by just writing anything, free writing or rambling, using words I haven’t used in a long time. Even though when I look at this computer screen I go blank, even though I just want to shut it off and not bother with it. I will keep writing. I don’t care how bad it is, as long as I’m writing. This would be the standing up part, and with each post another step towards that remote.  I can do this.


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Feeling Alone 

I’ve been rather busy as of late but I just added the WordPress app to my new iPhone 7 and thought I’d try it out with an update post. I may do more of these in the future.

Just recently I nearly deleted this entire blog. It may have been an existential crisis or perhaps a need for a change; to control something I can while so many other things are out of my control.  But instead I trashed all of my old posts save a few I thought were still relevant.  Mostly everything I do or think is autism related and I’ve been so engrossed in it that all of my other interests feel like mere shades of a past I can barely remember.  I know that sounds gloomy but if there is a better way to explain this it eludes me.

Last week I went to a couple of appointments and filled out questionnaires and they told me I have anxiety and depression.  So the process of getting the help I need has begun and I am wary of having to explain it to another stranger when I’d rather just sit by myself away from any prying eyes. That is probably due to social anxiety.  These things come as no surprise to me, of course, but there is something in having that validation which leads to a time of reflection and mixed feelings and then the realization that had the help been sought after sooner my life could be dramatically different.

If enough time passes by with no real changes in the positive I tend to find myself questioning my very existence. I am in the process of trying to better my life, after all, but to do so while a war is raging inside of me makes it seem to be a process moving at a snails pace.  I feel like I am two extremes battling relentlessly.  There is the part of me that wants to do all these things and is impatient and wants to go go go… then there is the part of me that just doesn’t want to do any of it. Not out of fear or stress but out of a strong disinterest for just about everything.

I recall feeling, or even unfeeling, this way before at different times in my life. Just like this. The duality and the constant inner battle and basically seeming calm on the outside.  The dismissals by others when attempting to explain any of it.  The alone feeling… not necessarily that I want or even need someone because I do enjoy my solitude…  but knowing that I’m alone in this can make it … well it sucks, plain and simple.  It’s probably better to be alone rather than to not be alone and still feel alone.  That is what it seems like when those around me do not understand.  But as an autistic this is not a new thing for me.  I have always been alone. Always. Even when I wasn’t.

Crap this post is more negative than I had planned. But I guess at least it’s honest.

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Back to school and venting about last year….

So the new school year is starting.  This is good. All parents know that feeling when they FINALLY go off to school again.  For us it is that, but then it is also a bit stressful when considering all the school meetings that will ensue in the near future because my kids are autistic.

The teachers will scrutinize every single detail when it comes to my four year old, as they did last year, I’m sure.  I dreaded those meetings because it was mostly the teachers pointing out all the things that I did wrong. Every single meeting was basically them listing off a bunch of ways in how I suck as an adult and parent.  So I am, needless to say, not really looking forward to this years worth of “fuck your parenting skills” meetings.  I’ve decided to speak up more and to be more prepared for these meetings this year. This year I will be making my own lists to bring with me. Things that I wanted to say last year.

Last year’s meetings were basically the teachers being condescending and pointing out all of my shortcomings, combing through them with an incredibly fine toothed comb.. one of those weird lice combs, I guess. I mean every. single. thing. was mentioned.  At the beginning of the school year I was dealing with a lot… I have health issues, learned later that is Fibromyalgia, and I am also Autistic and while I knew it, I was waiting for a dx and services and to figure out ways to adult as an autistic. Learning new skills. Figuring out how to handle my work load as a single mom. Learning how to keep track of things, to do the things that most people can so easily do. I know these things are easy for others because I have been repeatedly told “you should be able to do this, it’s EASY.” I could make a really, really long list of things I have issues with and that is just inside the apartment…  But that would be beside the point.  So back to what I was talking about.  Ah, right. My health, my Autism, my single parenting, I can’t adult, apparently.

So throughout the year I was getting the help I so desperately needed, becoming more of a grown up, learning where I needed the most help in, taking long hard looks at myself and figuring out ways (or trying to) to work with it all. Over time I was getting better and remembering to check the kiddos bag to make sure she had all she needed, but of course with the way things are, it sort of fluctuates, and I am far from perfect, as I am made so fully aware on a daily basis.  Anyhoo…  As it stands now, I do manage to get more done around the apartment. I have always been able to at least have what the kids needed, yknow, food, water, roof, clothes.  However, this school seems to focus on every little thing. Right down to what kind of clothes they wore, and whether or not their socks match. I mismatch my socks on friggin purpose..   However, when the kids end up with non matching socks it’s because I cannot find the other, I guess the washing machine ate it or its hiding in a dark corner of the abyss somewhere in the sock dimension, so at the very least I make sure the brands are the same and to me, and I guess only me, the mismatching looks kind of cool.

There is one particular meeting that has been replaying in my mind over and over, which actually prompted this post.  At this meeting, it was brought up that my four year old Destructo Beast showed up to school in just stockings -which also happened in previous meetings but this one sticks out to me- which is bullshit, because that never happened like they say it did. What DID happen was when we got there the DB wanted out of her pants and I left them in her cubby.  Well maybe one other time she wore only stockings under a fucking dress..  But even then, a change of clothes in her bag, and a pair of pants in her fucking cubby AGAIN. While at this meeting I remained silent, in my head I was screaming– maybe look In Her FUCKING Cubby!!!!!!  Other things were brought up about me not sending her with gloves, which is also bullshit, and not sending warm socks, also bullshit. I remember picking her up on SEVERAL occasions wearing clothes that belonged to the school, then looking in her bag and finding her change of clothes completely untouched.  And me being me, the introvert, the autistic with communications issues, never spoke up.  So I’m sitting here thinking of ways to make sure I do speak up when this stuff happens. But how the hell do I do that? In the moment I just can’t. I can’t.  Then I go home reeling about it… and thinking well the next time, but again, I can’t.  But one thing to remember, she will be in a different class this year with a different set of teachers. Things are done differently so maybe this year will be different?? Jesus fucking christ, I hope so.  I don’t know if I can take that condescending bullshit anymore. Note to self: Work on speaking up this year. Don’t let this shit continue.

I wonder, the way these teachers were towards me during these meetings, is this just how they are with all the parents or am I a special case because they know I’m Autistic?  Do these teachers talk to other parents like they are morons when it comes to things like bathing their fucking kid. Swear to god, I was asked if I give mine a bath, because her nails get dirty quickly, because she is a fucking kid. Um, no, I just let her wander around all day in her own filth. Come. On.

What I wish I would have been able to do was counteract all of their “you suck” points with my own “you suck more” points. Because if you really want to get technical, there have been times when I’ve picked the kid up and she had shit in her diaper, and it had been there a WHILE. Or other times when I was left notes like “needs gloves” when I know I brought them, and oh my god there they are in her bag…. etc.  These teachers obviously had their own issues with keeping up with her stuff also, so often when I know I had brought her gloves I couldn’t find them when it was time to leave, they brushed it off like oh well she lost them. Bitch, you tell me to get MY act together??? Fuck.

I refuse to let it go down that way this year.

(Edit: I should add that the meetings weren’t always like this. Mostly they were about how the DB was getting along and what needed to be done for her to succeed, and shit like that. In this post, however I am only focusing on the negative aspect of, well, every meeting that always ended with them pointing out all the things I needed to work on, after, of course, focusing on the kid and how to best help her and how far she has come.)

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Stop #NotAll-ing Us.

If you do not know what I mean by #NotAll-ing:  When an autistic posts something about what allistics do, it goes without saying that not all do it, but many do, so responding with “not all allistics do that, so don’t lump us in” is basically like a man saying “not all men” on a post about rape (just an example, Im not comparing autism to rape, or allistics to rapists, relax).  Yes we get it, not all allistics (non autistics) treat us (autistics) like shit, but oh so many do and that is why these things need to be said.

When you say things like #NotAll so and so about the thing, you are essentially belittling the thing talked about, or seemingly trying to make the thing not so important. The thing being talked about matters to the people talking about it, whatever that thing might be. And to be perfectly frank (and maybe even rude) about it– if you aren’t actually Autistic you don’t really have a right to tell an autistic person that such a thing never happens, because that particular autistic very likely has seen that thing happen or it has happened to them. Autistics are beginning to speak for themselves, and much of which is through social media, because not all are verbal and typing online is a handy way to get their “voices” out there.  But it is met with a lot of negativity from parents of autistic kids, which is always astonishing to me, because these are people that should be more understanding than someone who does not have autism in their lives.  But they get offended, sometimes, and rather easily.  Do I really have to say that not all parents of Autistic kids yadda yadda? Well just in case, there it was.

Many many arguments and misunderstandings happen online within Autism groups, often between autistic and non autistic parents of autistic kids.  I think a lot of this has to do with the fact that autistics tend to word things more bluntly and the non autistics read it with a tone that simply isnt there.  And there is also this misconception that if one is able to type coherent sentences online then that person is too “high functioning” and “not autistic enough” to have a valid opinion.  People that hold that statement to be true have no friggin idea what that specific individual might have suffered through or overcame in their lifetime. Maybe it took years to find their particular form of communication, and then with a simple phrase it is belittled and all that hard work becomes diminished by some stranger on the internet.  This is how *some* allistics like to silence autistic adults.  The very autistic that you might be arguing with may have been nonverbal, or they slammed their head into things during meltdowns, or they might have chewed on their hands until they bled at some point or maybe they even still do. You. Don’t. Know.

Using the term high functioning can belittle the struggles of an autistic. Using the term low functioning can belittle that particular autistic in a way that people assume they have no strengths. I hate the functioning labels to be perfectly honest. Personally, I fluctuate. There are days where I get shit done. There are also days where I cannot function. There are many days where I am in between, sort of functioning but not really.  It will vary depending on stress, anxiety, sensory issues, and anything else really…  I guess my point is that no matter where we are on the spectrum we ALL have our struggles and our strengths, just at different levels and they vary from day to day. And that is if you don’t count comorbids. Don’t even get me started on the damn comorbids. Okay maybe Ill say a little. When people talk about hating autism, most things they are thinking about are the comorbids. So it would be nice if people would recognize that. If you do not know what I mean by comorbids those are other conditions that autistics may have as well like ADHD or Anxiety, or SPD, or Epilepsy, etc.

So often, when an autistic tries to give their opinion on something that disagrees with a non autistic person it is met with such animosity and defensiveness.  Then when the autistic tries to explain that they didn’t mean it however it was taken they are tone policed, told that they should be more polite while stating their opinion, etc.  This gives the message that the non autistic’s feelings are more important than the opinion of an autistic person who actually lives through what that person’s child lives through (on some level).   And yes, not all autistics are the same, we say that when non autistics try to fit us all into a box, however we all have to fit certain criteria to be autistic, so don’t you think that maybe there will be similarities among us?

Those of us that do take the time to try to offer our advice or opinions in a group or forum do so because we can relate on some level and most likely because we care about our fellow autistics so much that we want others to understand it from our perspective.  Being autistic makes it where when we see things talking about autistics it is personal to some degree. We see ourselves as kids when we read posts by parents talking about their children, because we were once children too, dealing with very similar scenarios. So when this happens it is difficult to not get a bit passionate and pushy when trying to get our opinions across.  I ask that if any of you non autistics do tend to try to silence autistics (online or in real life) to maybe consider all of which I have stated above. Autistics are the ones with communication issues, so to tell us to say things differently, in my opinion, is quite an insult, especially if it took a very long time and a shit load of hard work to be able to say what we do.

And before anyone says “you don’t speak for all autistics”, I know that. But I’m willing to bet that many other autistics will agree with what I have said.

Please also keep in mind that your autistic child will grow up to be an autistic adult. How would you want people to treat them? Would you find it acceptable for others to speak to your child the way that you speak to autistic adults? If not, then maybe it’s time to take a long hard look at the way you conduct yourself.



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It’s April 2nd. Autism “Awareness” up the wazoo. So here’s mine…

I posted the following in a rather large autism parent support group on FB and on my FB page for Eluding Atrophy:

Happy Autism Awareness/Acceptance Day!!!

Whatever color you use, blue, gold, red, or symbol, puzzle pieces or the rainbow infinity…
Let’s remember what this is about, okay? Autism. What that means, what it REALLY is, those affected by it and actually are Autistic, what they need to live a functional life. Stuff like that.
Let’s all, whatever friggin color we use, promote not only awareness (for those who have no idea what it is) but also acceptance. Auties want to be accepted, included, and accommodated where needed to live functional lives. Auties can contribute to society just like any other person, with the right services. While we fight for services for our kids, keep in mind that these kids will one day be autistic adults and will, more likely, still need some kind of help, so let’s try to look towards the future and find a way for them to have those things when they reach adulthood. So many of us have gone without, those of us on the spectrum that are adults today, and this is why you will see so many passionate auties speaking out.
You will see many Autistics speaking out against blue and the puzzle piece. Let them. This month is about THEM after all, isnt it? Yes it is about your little ones too, it is about my little ones, but it is also about the Auties that came before them. Accept that they have a voice and can speak for themselves, and that what they say might not be something you agree with but they have a right to speak about their own experiences. Our kids will one day be older and want to speak for themselves, would we silence them just because we don’t like what they have to say? I wouldn’t.
Promote your color, but let others promote theirs as well. I say this to all.
Fellow Autistics, as hard as it can be for some of us, the blue wont go away over night. Advocate. Advocate hard, but try to keep in mind that change is hard for all of us, some more than others. And a mindset cannot be changed right now, it takes time. Maybe one day a compromise can be made, maybe a real change will happen. But until then I will promote the color and symbol I feel is appropriate (gold and rainbow infinity), and if someone objects they can but I dont care, because I am autistic and I will promote my own neurotype the way I see fit.
Non Autistics, all I ask is that we ALL stop the sharing of misinformation. Let’s promote love and acceptance, let the world know that autism is not a disease and that our kids are not broken.
Go blue, go gold, go red, go orange for all I care at this point.
Ultimately it is about getting the right services for those who actually are autistic, and to stop the spread of misinformation and dehumanizing those with the disorder.

These past few days leading up to the month of April have been rocky, at best, in online Autism groups. Autistic adults have been speaking out against Autism $peaks and it’s been met with backlash from some parents that disagree with their view point.  Maybe… that post will be taken a bit better. I do NOT support AS, don’t get me wrong, and I do not agree with light it up blue or the puzzle piece. But I just felt like maybe trying to find a middle ground might be good to do, in the long run, if anything it might get a few people to think and ask  but why don’t they light it up blue?? etc.  Because clearly, if they know the harm AS does, surely they would be appalled by that as much as we are? Right?

Autistics are speaking up and for themselves, and it seems to be making some non autistic parents of asd kids upset.. Which is incredibly hypocritical if you consider that they are supposed to be advocating for the acceptance of their own child. These children will one day be adults, autistic adults, and yet they try to silence the very people that are in the same demographic…  WHY?   Why the fuck are they doing that? I just cannot wrap my mind around it.  So I take a step back and look. I see blogs by parents writing about their kids, I see posts in groups, etc, which many tend to have this “woe is me” thing going on. This isn’t to say that ALL are doing this, of course not. I know some wicked cool non autistics.  The point being that there are some or many that are using their child’s autism for sympathy or likes or views.  They even go so far as to post the most intimate of details and I cringe at the thought of my parents posting something about me in that way. I would NEVER go that far when it comes to my kids. I am not their voice. I am my own voice. When mine are able to speak for themselves they will do so, and I will do my best to help them find their voice, but I will in no fucking way attempt to speak for them. Ever. This seems to be a concept that is hard for many to grasp, letting the autistics speak for themselves. But what about the non verbals? I have to speak for my child because they CAN’T speak for themselves.  Not necessarily. There are nonverbal autistics out there with blogs. They probably can find their voice if you help them find it.   When it comes to schools and IEP’s and doctors etc, yes you speak for them there, I get that. But this isn’t what I’m referring to. I’m referring to the so many that will tell others what Autism is when they have no fucking clue what it really is, because they have only witnessed it as a carer.  Then when those who actually are autistic try to speak up, those very same people that claim to be fighting for services and acceptance of their own children will try to silence those of us who want to speak for ourselves. Something is VERY wrong with this.

This martyrdom of carers and parents has led me to believe that Autism “Awareness” month isn’t even about us anymore, if it ever was, but rather about the parents and how hard it is to raise someone on the spectrum, the struggles and sacrifices. Most of the message of “light it up blue” is negative. So much misinformation is still being spread about Autism. It is made to look like this horrible thing, worse than death.  Autism destroys homes, marriages, lives, etc.  This is what we (those who advocate against AS and for ourselves) are trying to combat. Fight the spread of misinformation, to get our voices heard, to tell you (the non autistic) what autism is REALLY like.  I am hoping that my post above will help to sort of “bridge the gap” that is growing so vast between the Autistic Adults and non Autistic parents of Autistic kids. Maybe it will, maybe it wont. But I have to try.

I want to say to those who continuously argue the use of light it up blue, those who say that it is fine because it is what they feel is appropriate and they like it:  Nobody fucking asked us what color or symbol WE wanted.  But many of us are telling you now, that we DON’T light it up blue, we DON’T like the puzzle piece and we are explaining WHY. Autistics are speaking out, why wont you listen?


For more info on the Autistic perspective (just a few links, there are so much more, and most of these have links to even more!):

Ask An Autistic- What’s wrong with Autism Speaks? 

30 Days of Autism

Emma’s Hope Book- What’s wrong with Autism Speaks?

Autistic Hoya- So High Functioning

Autism Women’s Network- Your Autism Awareness Has Failed

Non-Speaking Autistic Speaking 



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Online Bickering about Autism

I am Autistic.  That is not up for debate.  But for some reason, very often, actually, it seems to become the topic of discussion when I do bring it up while trying to “voice” an experience I may have had that relates to a particular online post.  I’ve been venturing out, more and more, out of Autism groups and posting on my own personal page, and my posts are being shared and so the audience grows.  This is supposed to be a good thing. My hope is that my experiences of growing up without a diagnosis (I have one now) might shed some light on some things for others.  I never claim to speak for everyone on the spectrum, I only talk about myself. But, I generalize a lot, and that gets misunderstood.

I found this meme and posted it because I relate to much of it.


It was shared at least 30 times… and I think that being shared as much as it was it brought the pink lady to my post.  I covered her name and photo in [pussy] pink while my name is covered in black, like my soul


Admittedly, I had zero patience from the beginning, and I know that I could have responded differently, but as the “conversation” progressed I realized that it wouldn’t have mattered. She had her mind made up and was looking for a fight. After my yawn comment her response was something along the lines of blah blah blah, under your skin, blah blah blah I’m an idiot. — I’m paraphrasing. And then I was blocked.  The fact that she called Autism a “mental disease” shows the lack of knowledge in her case, regardless of her brother having autism –If she even has a brother.  I came to the conclusion that this particular individual has lived with (maybe) someone on the spectrum and seen it, but has never taken the time to actually see things from their point of view.  And so when her name went black I decided to just delete the comments and be done with it.  Thing is, this will continue, I know that, and I guess I was just surprised it happened so soon on my personal profile. Granted, it was a public post- the point is to get it out there- but it took me by surprise nonetheless. And I know this happens a lot, to many other Autistics that advocate online. It happens to me in groups all the time. But this is something of a noteworthy experience, in my opinion, because it means my posts are getting around.  This could be good, all in all, despite the negativity that ensues.  And I wanted to document this momentous occasion, in the fact that it has found it’s way to my posts. Irritating, though, as it may be. It’s still kinda cool.

I wont let things like this deter me from what I am trying to do. I am at the beginning of my journey, so to speak. I now have a diagnosis, the pieces are finally coming together, and my childhood makes more sense.  Even though I suspected Autism for several years it hasn’t exactly hit home until recently, when I received my diagnosis, a sort of recognition or validation, perhaps?  I have been meaning to write about it… my thoughts on the transition, as it were.  But instead I dove headfirst into the cesspool that is Online Autism Groups and have been trying to find my way back to the surface. It is pretty easy to get caught up in the online drama.  And over the past year I have learned a lot and am hoping to use these lessons to my advantage in polishing my skills as a writer and perhaps as I go along- helping one or two people along the way by posting my own experiences.  I do so hope that you will accompany me on this journey.


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New Year’s Eve in an ASD Household

New Year’s Eve.  Fireworks.  Parties. Celebration.  Noise. Lights. Boom! Meltdowns.

The holidays can be especially hard on those with ASD (Autism Spectrum Disorder).  The change in routine, the chaos that is preparing for the holidays, the family gatherings, and all the distractions and possible meltdown triggers.  Just finishing up the Christmas dinners and presents and then right after comes New Year’s Eve.

I think it really depends on where you live, in cities there will probably be more fireworks…  In Iceland, we go ALL OUT when it comes to New Year’s Eve.  Just as midnight is about to roll in the sky lights up with bursts of green and blue and red and yellow, along with the crashing booming sounds that follow.  It is a wonderful sight, to be sure, but for the little ones who are on the spectrum it can be the most terrifying thing, ever.  I live in the city, and every frigging house, it seems, has their own fireworks show.

I have a love/hate relationship with fireworks. I love the way they look from afar, I HATE the way they sound and come at me if I’m close enough..  Then when all are going berzerk in the night sky, it is almost deafening.  A firework display meant for the public is also both incredibly beautiful but  terrifying at the same time.  This year we chose a spot that was far enough away to watch but close enough to get the intensity of it all.  It seemed to be a perfect spot, and I never felt the fight or flight kick in. My youngest, on the other hand, seemed to be very unsure. She wore headphones to block out the sound (somewhat) but she inched away with every blast. I had to keep a good grip on her, I was afraid that she would run off. She is one to run off on occasion with no sense of danger, right into the road if I don’t have a good grip.  I’m thinking now that my focus on the little one kept me distracted from any possible issues I might have had with the display.  But it went well, regardless. My oldest (ten year old) was incredibly excited and yelled “Wow awesome! Oh my god!” at every single one.  It seems like only yesterday that he was the one holding onto me for dear life during one of these shows.  But now it is his younger sister (nearly four years old) that I have to make accommodations for.  She is more sensitive to sound than he ever was.  Even with the headphones she complained about the noise.  The public display wasn’t that hard for us. But when we got home, that is quite different. While we were firing our own it wasn’t that hard, but eventually she said “that’s enough”.  It was closer so I’m thinking maybe that was more intense, I’m not entirely sure.

Bedtime.  I put the little lady down at around eleven… it took a while to shoot off all the fireworks we had, with breaks in between.  And she was so excited and over tired that I thought she would never go to sleep. Just as her eyelids were drooping, midnight was rolling around and the chaos that is New Year’s Eve here in Iceland ensued.  If you google it, you can see pictures of an amazing display of fireworks over the capital.  It is a sight to behold, seriously.  But if you are trying to get an over tired ASD nearly four year old to sleep at the time that all of these go off… it is an entirely different story.  I got lucky this time.  She was SO tired that even though there seemed to be a war going on outside she just drifted off as if we were out in the middle of nowhere, somewhere in nature that was peaceful and serene.  And maybe because she fell asleep with all that noise it never woke her up.  Me, on the other hand, I was so on edge that as soon as I saw her go to dream land I jumped up and had to go look.  It wasn’t even excitement for seeing the pretty stuff in the sky but rather the constant banging and boom and explosions had my nerves on edge. Some were so loud that I jumped, startled, like a cat realizing there is a cucumber in it’s space that wasn’t there before.. Seriously why do people do that to their cats?  Anyway, all things considered, it went really really well for us this year.

Last year was really really hard. So I took that into consideration and made the necessary accommodations and opted out of any sort of party that might make it more difficult for the little ones.  We kept it at home, except for the quick stop at a public fireworks display.  We had noise cancelling headphones and gave the kids a rest when needed.  We also made it fun, messing with each other and joking around. We had a nice dinner (which the littlest didn’t eat, she had toast).  This New Year’s Eve was pretty laid back, all things considered, but most important of all, the kids had fun and we were meltdown free.  The littlest seems to be a bit sensitive today, too much of a good thing last night I guess.

In closing, to any new Autism parents that might be having a hard time with the holidays:  It gets better.  It really does.  You learn through experience, what works and what doesn’t.  Even if these past holidays were really tough, you can use that as a learning tool, and perhaps make new and better preparations for next time.   And cut yourselves some slack also, because you are doing the best you can!  I say this because I have seen in some online groups how hard the holidays were for many Autism parents, especially those who are newer to their little one’s diagnosis. As hard as the holidays were on these parents, they were just as, if not more, hard on the little ones.  So do try to keep that in mind for next time.  You are doing great and don’t give up.  🙂




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Christmas and Food Aversion

The Holidays, Christmas, or whatever you want to call it… This is a time for celebration, a time to love and have fun with family and deal with all the glory that is Autism food aversion.  Fun fun.

Sitting down at your dinner table and putting that Christmas meal in front of the pesky picky eater and begging them to eat. You try to bargain, you try bribing, you try the old “if you don’t eat, you don’t get ice cream,” or whatever.  You name it, Autism parents have tried it.  And believe it or not, the picky eating isn’t even the worst part of the scenario.  The worst part is when the family members of yours, who don’t have Autistic kids (or any kids, for that matter) start giving you advice on what you should be doing instead. I’m sure most of you have heard some form of “if they are really hungry they would eat it…” or “it’s because you just let them have what they want most of the time” or the ever popular “they are being a brat,” or “they are controlling you..” As if any advice they are going to give hasn’t already crossed your mind at one time or another, before you ever did any research to learn what Autism really is.

So let’s start with what food aversion really is.  Using the term “picky” is not accurate, in my opinion.  Picky implies that they could eat it and simply choose not to.  When it is Autism related, it has nothing to do with them just being picky.  Food aversion for those on the spectrum, more often than not, has to do with sensory issues. Sensory meaning texture, smell, taste, look, etc.  And when it does not have to do with sensory issues, one must consider a large list of other things… such as are they having a rough day, are they close to a meltdown, are they stressed in any way that could lead to a meltdown… something like that.  It is NEVER simple when it comes to Autism, at least not to the untrained eye.  And then there is also the part where once they decide to not eat… there isn’t a thing in the world that can change their mind.  Getting an ASD kiddo out of a specific mindset is incredibly difficult. And all of that aside, there is also the part where many on the spectrum think they are not hungry when they actually are, or don’t know they are hungry until they are STARVING, or simply just don’t get hungry for long periods of time.  Like I said, it’s friggin complicated.

I’m going to go ahead and add what Autism really is, just for some background for those who have no idea. Autism is not bad behavior, it is not something a child can control. An Autistic individual has a differently wired brain than someone who is non Autistic. This means that information that comes through to the brain is in many cases unfiltered or over filtered, depending on the individual, and this accounts for overly sensitivities to things like sound, lights texture, (or under-sensitivity) and that is only a small part of it. There are other things, social communication problems and such, but that is nothing to do with this particular post. To learn more about Autism, click here.

In my own situation, I have a nearly four year old Autistic girl, whom I have lovingly dubbed The Destructo Beast.  She is incredibly “picky”.  Many Autism parents know how difficult it can be. This young lady will only eat a few things, which I can usually count on one hand, but also, it changes, what she eats one day she wont eat the next. So it isn’t like there is anything set as backup just in case she doesn’t eat. It is ALWAYS trial and error. She also has some pretty severe sensory issues, especially to sound and texture (when it comes to food and clothing), and I suspect there is a bit of OCD in there somewhere because food cannot EVER touch or she wont eat… even if she likes what is presented to her.

With that being said, I’m going to address some of the common things people say, when they have no idea what food aversion is.

“If she was really hungry she would eat it.” — No. Just no.  An ASD individual would rather go hungry than eat sensory offensive food.  I guess the only way I can explain this is if someone put the grossest thing in front of you, on a plate, and told you to eat it.  And this something gross is so disgusting that you literally cannot swallow it, because it is horrid in texture, smell, and looks awful all at once.  A plate of slimy worms or dog shit. Could you eat that? Even if you were really hungry, would you eat that? I highly doubt it.

“She wont eat now because you just let her have whatever she wants all the time.”  — Saying that to an Autism parent is pretty much a slap in the face.  For one, you are making a judgment based on one moment that you happen to be privy to.  For two, you have NO IDEA what it is like at home. And for three, a parent of an Autistic child HAS tried just about EVERYTHING to get their child to eat food that is good for them. Do you seriously think that we are such pushovers that don’t give a crap about our kids so we just give them what they want to make it easier on ourselves? If you think that you don’t know us at all. It is a constant BATTLE to try to get our kids to eat. And after we try and try again, we do get to the point where we decide to pick our battles. But that does not mean that we have given up and given in, it is simply that we are trying subtler approaches, that take time and patience, and results don’t show over night.  For me in particular, and I’m guessing this is probably common, during the holidays the last thing we want to do is fuss and fight with our kids, especially at someone else’s house, so for THEIR (the child and the person who owns the house we are visiting) sake, not our own, we let them slide this once.

“She is trying to control you.” — No, at most, they are trying to control their own situation, by NOT eating something that is sensory offensive. OR they have had a full day of sensory input and have reached their limit and sometimes no food will be good then… because THEN they are EXTRA sensitive.

There are many, many more.  The child is not a brat when trying to avoid eating something that is uncomfortable, or even painful, to eat.  As someone who has some pretty heavy food aversions, even as an adult, I can understand how difficult it is for that child… the one whom you might call a brat and/or judge that parent.

If you have an autistic individual in your family, or even know someone else who does, I urge you to do your research. LEARN about Autism, please, for the sake of those on the spectrum and their caregivers. And do the rest of us a favor and STOP comparing Autistic kids to non Autistic kids. The two are non-comparable.   It IS up to the non Autistic to learn about Autism, it is up to YOU to learn to accept Autistic individuals for who they are, and not try to mold them into something they may never be. That does not mean they are not capable, it means that accommodations need to be made, tailored to the individual to help them learn, grow, and succeed.

And if you are ever in doubt, ASK an Autistic or a parent of an Autistic. We are more than happy to explain and help.


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