#BoycottToSiri and Autistic Civil Rights in the Media

“To Siri, With Love” is a memoir written by Judith Newman about her life raising an autistic boy. It’s a New York Times best seller, with rave reviews from people like Jon Stewart. The book has been described as moving, honest, and funny.

My feelings on the book started at zero. I’d heard about the book, but I had no interest in reading it. Like most of my fellow advocates and activists, I became interested when I saw the #BoycottToSiri tweets from Amythest Schraber.

I haven’t read the book, but I’ve seen snips and clips. Those clips and snips have been horrifying to read. It’s enough to make me question how the book got published.

The common theme of those excerpts is that she continuously makes fun of the autistic experience at the expense of her son.

It’s not so much that I’ve been hesitating to speak on this. Ask my husband, it’s all I’ve been talking about.

It’s that I’m angry, and when I speak out of anger I usually set the conversation on fire with insults, disrespect, and overall meanness. That’s a weakness of mine that I’ve been working on.

I don’t want to hurl insults. I don’t want to disrespect anyone.

I want something to be done. I look around, and I see my neurodivergent family being affected with me that this book was allowed to be conceived.

Think I’m exaggerating? Check out these links. Go ahead, I’ll wait:

http://tagaught.net/boycotttosiri-1/

http://www.autistichoya.com/2017/12/boycotttosiri-letter-to-judith-newman.html

https://boren.blog/2017/12/02/an-actually-autistic-review-of-to-siri-with-love/amp/

https://beckettsthoughts.tumblr.com/post/168304914386/the-problems-with-to-siri-with-love

https://bookriot.com/2017/12/05/an-open-letter-to-harpercollins-about-to-siri-with-love/

https://www.autismforums.com/threads/people-on-the-autism-spectrum-are-boycotting-to-siri-with-love.22974/

https://americanbadassactivists.org/2017/12/02/an-actually-autistic-review-of-to-siri-with-love/

https://americanbadassactivists.org/2017/12/06/bookriot-an-open-letter-to-harpercollins-about-to-siri-with-love-boycotttosiri/

http://www.squidalicious.com/2017/12/boycotttosiri-needed-to-happen-because.html

https://www.bustle.com/p/why-i-believe-to-siri-with-love-by-judith-newman-is-a-book-that-does-incredible-damage-to-the-autistic-community-6780420

https://somegirlwithabraid.wordpress.com/2017/11/29/autistic-moments-autistics-should-be-sterilized/

https://elizabethroderick.wordpress.com/2017/12/07/review-of-to-siri-with-love-by-judith-newman/

https://aspi.blog/2017/12/08/links-pics-and-a-thunderclap/

https://writeabledreams.wordpress.com/2017/12/06/an-autistics-thoughts-on-to-siri-with-love-by-judith-newman/

https://themighty.com/2017/12/to-siri-with-love-boycott-judith-newman-autism-vastectomy/

http://talesbytheunexpected.be/books/book-analysis-to-siri-with-love-by-judith-newman/

https://culturess.com/2017/12/07/autistic-readers-boycott-to-siri-with-love-autism-moms-love-letter-to-her-son/

http://observer.com/2017/12/autism-to-siri-with-love-book-criticism/

http://www.thinkingautismguide.com/2017/12/why-to-siri-with-love-is-wrecking-ball.html 

https://visualvox.wordpress.com/2017/12/12/the-virulent-tosiriwithlove-debate-our-very-own-autistic-zombie-movie-drama/

https://navigatinglifemyjourney.wordpress.com/2017/12/10/stand-with-us-boycotttosiri/

https://sg.news.yahoo.com/people-autism-spectrum-boycotting-apos-195931360.html

http://unstrangemind.com/an-open-letter-to-jon-stewart-concerning-boycotttosiri/

It’s a lot, right? Is it overwhelming? It should be.

I myself have been hesitating to read the book. I’ve been actively taking part in the boycott and haven’t emotionally invested in obtaining a free copy yet. I’ve been repeatedly triggered with clips and snips in the #BoycottToSiri tag on Twitter though, and it’s shaken me to my bones. When I read it, I’ll do another post/book review.

This book is peppered with insults and bad ideas disguised as humor that read a lot like subliminal messaging: “How do I say, ‘I’m sterilizing my son’ without sounding like a eugenicist?” By itself it’s disgusting, but read the passage that follows and one could almost think that this line of thinking is acceptable and not actually eugenics (except she’s only lying to herself because it still totally is). Eugenics. In 2017. That’s incredibly dangerous, especially to the easily influenced who might explore sterilization options in their states or other countries.

There was another bit that struck me; it’s the part where she describes Gus’s reactions to thunderstorms. She tells us how he hides in the closet.

I felt a pang of recognition, I used to hide in the closet during thunderstorms! All the way up until 11 or 12! It wasn’t so much that I was scared of being flooded on, or anything like that, it’s that thunderstorms are LOUD. It was much quieter in the closet and less stimuli. That much sound is bound to wake up fear in a person who’s brain responds to the environment.

Anyway, she follows up that tidbit about her son’s fear with saying that every time he does it she wishes she had done pregnancy yoga.

Cue the sound of a stricken nerve, and a series of questions: Did my mom ever feel that way about my unreasonable fears? Is that what goes through the minds of people when an autistic person is startled by the environment, apathy? Is that apathy toward autistic people the reason this book is a best seller? Why isn’t the reaction to help Gus not to be afraid of thunderstorms?

I feel that way about every line that I’ve read that’s been posted by someone else. I question what empathy means to those people. If we can be seen as unfeeling, unworthy of consideration, unable to comprehend exclusion, how are we the ones who are unempathetic?

I look around and I see waves of people scurrying behind the anti-bullying movement, with no real, emotional understanding of what bullying is.

It’s not just physical fights. It’s not just emotional abuse. It’s pointing and laughing. It’s giving negative attention. It’s writing a book about autistic people, without autistic people, at their expense.

It’s devastating to me that this book is a best seller. It’s not just the author’s fault. She’s a product of autism propaganda, a mouthpiece for the neurotypicals who think they need a translator for autistic people. No, this is bigger than her.

This is a social failure. Neurotypicals already think negatively of autistic people.

To write a book about how hard it is to deal with your autistic son, detailing and dissecting his “weird” habits as though he were something to be studied. Then to say “[the book] wasn’t written for autistic people”. The nerve! Doesn’t she understand that this is a DIRECT EXAMPLE OF SOCIAL EXCLUSION? This the worst type of bullying!!! And to add that it’s supposed to be funny and we don’t get the joke

Sit down. I’m about to rap some knowledge.

The number one killer of autistic adults is suicide. As many as 67% of us have experienced suicidal thoughts. For most of us, they generally stem for a desire to be accepted for who we are: flaws, special interests, and all. Acceptance is a basic human need, even in autistic people. How does this book, which normalizes neurotypical negative thoughts about autistic people, make room for acceptance?

Why is it that neurotypicals don’t understand that they are just as perplexing to us as we are to them? Why don’t neurotypicals understand it’s harder to ACTUALLY deal with excess stimuli and allistic nonsense that it is to WATCH somebody deal with excess stimuli and allistic nonsense?

One has to wonder what the agent, the editor, the publisher, were thinking when they allowed this travesty to waltz out of their publication and into the hands of hungry readers curious about a love letter to a machine. Dollar signs, probably. Autism is a hot topic, with Atypical, The Good Doctor, Matthew Mcconaughey, Jon Stewart, Night of Too Many Stars.

The platform is seriously lacking autistic voices. It’s lacking autistic women’s voices. It’s lacking autistic people of color’s voices. It’s lacking autistic LGBT+ voices. We don’t need books written by people like Judith Newman.

We need to tear down the social construct that allows for people like Judith to speak over autistic people, and rebuild it with autistic voices front and center.

Autistic voices need to be in the media, politics, comedy, literature, Hollywood.

Are you autistic and thinking of running for office in 2018 or 2019? Do it.

Start writing, start speaking. Accommodations, be damned! Whether or not it’s too loud, too bright, too much, we are stronger together than we ever are apart. We need to boost each other up, and demonstrate how to respect an autistic person for who they are, regardless of “functioning level”.

Autistic people need to create the status quo. Get involved, speak for yourself, and then listen. We need to amplify each other’s voices. We deserve to speak about how we get treated, where we want research to focus, how we can be included in society, how we’re portrayed in the media and television.

Our siblings, parents, lovers, spouses, friends, we need you now more than ever. We need you to be better than Judith. We need you to appreciate us for who we are, respect our special interests, respect our autonomy, love us, stand with us, and give us the mic instead of answering for us.

It’s our time to speak now.

 

 

 

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How To Hire Someone With Autism

Less than a third of all autistic adults are employed, either full-time or part-time.

Less than a third. 

That means out of 3.5 million people with autism, only about 1 million of those people are employed. Most of them aren’t making enough money to live on their own. And it doesn’t look very good for the young autistic workforce.

That doesn’t make any sense. There’s literally science that says we can work and we love it!

So why won’t more people hire us?

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The Office Environment

The workplace is a beehive. Busy, busy, busy, all around you people walking to and from the copier, shuffling papers, keyboards clicking. The bright florescent lights beaming into your eyes paired with the gentle hum of everyone trying to talk low into the phone. Small talk is the only talk at the office. Cheeky smiles, ignored requests, unanswered e-mails and phone calls are just a few of the subtle, passive-aggressive ways people at the office get under each other’s skin.

People with autism don’t do well in these types of environments. Too loud, too bright, too mean. I myself work in this type of environment. I love my job, but I wear sunglasses and headphones on a daily basis. They were willing to accommodate my brightness sensitivity with light cover and a doctor’s note, but too many people complained that the light cover was too dark. If I answer a question too sharply, or respond too honestly, I get on people’s s**t list. They watch me like a hawk for about a week, and then they forget.

It sucks. I’d rather work from home.

Most employers don’t know how to treat someone with autism. Even less actually employ them. People fear what they don’t understand. We are how we are, and that’s not going to change. If we can’t change, that means employers have to.

It’s not acceptable that so many of us aren’t working when we have marketable skills and the only things standing in our way is HR’s interpretation of us. So, here’s how to hire someone with autism:

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How to Interview an Autistic Person

Don’t focus on eye contact, demeanor, tone of voice, none of that. Can the person you’re talking to do the job you want them to? Don’t worry about whether or not the person fits in with your team. If your team lacks people with autism in it, you’re not getting a full perspective anyway. Maintain an open mind, and have patience with any questions, stuttering, long winded answers, fidgeting, etc. People with autism have a knack for rote memorization, and make excellent resources in the workplace once we know the ropes.

Interview us like normal people, just be aware of our atypical movements and verbal communication skills. Just because we’re having a hard time talking to you, doesn’t mean we can’t do the job.

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How to Provide Reasonable Accommodations

Reasonable accommodation means certain things in the workplace environment can be adjusted to make the person with autism more physically comfortable. The less stimulating the environment is, the less likely we are to become overly stimulated and need breaks, and the more likely we are to make you tons of money.

Reasonable accommodations can include numerous compromises, like needing feedback regularly for job performance, requiring a 5 minute break every hour, light covers, heads-up for company changes, etc. It’s important to view these accommodations as compromises instead of negative aspects of hiring someone with autism. They aren’t negative. It doesn’t cost you anything to give your employee a few extra five minute breaks.

There are certain factors that must be considered when considering reasonable accommodations. These include the actual job itself. For example, light covers aren’t a reasonable accommodation if the job is predominantly outside.

Talking to the autistic employee is the best way to figure out what accommodations are necessary. Some of us have dulled senses instead of hyperactive ones. Some autistic employees don’t even need accommodations, depending on the job. At my job, my reasonable accommodations include letting me wear my sunglasses inside and sitting me in a darker area. In no way does this disrupt anyone, and without the light distractions I can see things so much faster, and therefore, work quicker. Productivity for the win!

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How to Give Performance Feedback

Be very clear! Make sure you have metrics in place to measure performance. Autistic people need clear metrics and expectations. We think completely differently from you, and that’s crucial to remember. For example, First Call Resolution numbers must be high, Customer Callbacks must be low, etc. My director gives my team weekly goal sheets and accounts list, and that helps me know what she’s looking at so I can work it. She’s a very intelligent lady, and I trust that she’s looking at the right accounts. If I didn’t trust her, I wouldn’t be working what she gives me, and I would be working on what I thought would bring us more money.

That said, it’s also super important to set attainable goals, and communicate them to us in a way we can understand. This will keep us on task with where our performance is at any given time, and will help us to work smarter, and make you money. Along with setting those goals however, you may need to check in a little more often than you normally would to make sure we’re on task.

What to Do When Your Autistic Employee is Socially Stepping on Toes

When I first got hired, before my diagnosis, before I was nice, I used to have problems with people in my department. Okay, all the departments. I was very nervous about making good impressions, but I didn’t have the skills or know-how to make one. My desk was (okay, is) filled with little Post-It notes to remind myself of basic social skills like, “Am I taking this wrong?”, “Humility – don’t be so prideful”, “Don’t forget to smile at people”, “People appreciate acknowledgement”, to name a few.

If your autistic employee is stepping on people’s toes, you need to let them know. We don’t do well with subtleties, so bluntly tell us that you’ve heard around the office that people are complaining about us. Tell us point blank how we can rectify that behavior. For example, if your employee is cutting in line at the fax machine, you can tell them, “People have complained that you are jumping the line for the fax machine. When you need to fax something, make sure there is not someone who was there first.”

My director gave me a book called, “What Got You Here, Won’t Get You There.” It was in regards to my behavior. I know because I read it, but I didn’t understand why she gave it to me. There are like, 20 habits in there, and I did a little bit of each, so I wasn’t sure if it was my whole personality that was off-putting or if there was something specific about interacting with me. With that book though, I learned about workplace self-awareness, and ultimately my temperament started to relax.

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Hiring people with autism is a very smart move for your employee base. Not only are you getting a person who isn’t interested in office politics or drama, you’re getting someone who wants to WORK. You’re also getting a new perspective. Working with people with autism gives a fresh outlook on what exactly is important in the job market, and I can attest to this, soft skills CAN be taught with the right training. I’ve been told many times by various supervisors that they wished they had 10 of me. I work hard, and even though I can be a little short-tempered on occasion doesn’t mean that I can’t make lots of money with my skills, and in the end, isn’t that what we’re all in business for?

 

Arianne Around the Internet

Paid Posts:

Arthritis Blog (MD Express Urgent Care)

Dear Neurotypicals: This is How You Communicate With Someone Who Has Autism (Healthline)

Dear TV: Please Don’t Take a Cookie-Cutter Approach to Autism (Healthline)

Guest Posts:

10 Quotes That Will Change Your Life (The Escape from Ordinary)

Receiving an Autism Diagnosis in Adulthood (Uninspired)

Syndications:

http://www.healthline.com/health/autism/autism-contemplated-suicide

https://themighty.com/2017/07/autism-and-the-importance-of-social-skills/

https://themighty.com/2017/09/autism-and-the-hispanic-community-3/

https://researchautism.org/examining-why-autism-is-under-diagnosed-in-the-hispanic-community/

https://themighty.com/2017/09/tips-for-hiring-an-employee-with-autism/

https://researchautism.org/how-to-hire-someone-with-autism/

Presentations:

 

I also have several projects currently pending, and will post as they are published.

 

Autism Through My Eyes

I’m at the point right now where I know who I am in this world. It took me a long time to get to this point. I used to hate talking to people, socializing, small talk, the works. I hated the show, I hated getting ready for the show, and I wanted everyone to just leave me alone. I relished being alone. I didn’t have to work hard at pretending to understand others or socializing, because I understood myself.  I’ve always had survival techniques, coping mechanisms and the like, but it wasn’t until I understood the basic structure of the feelings of a normal person that I able to see the associations in the correct order, and truly understand what it means to be human.

I am autistic. My mind works in associations that I call “boxes”. They are located in a place I call “the void”. The void just the blankness of my mind’s eye, it’s black and there is nothing, unless I’m thinking. Depending on what I’m thinking about, certain things happen in there. If I’m thinking about my feelings, there are color-placement associations. When I’m angry, my chest is red. When I’m sad, my arm are blue, and happiness is yellow in my tummy. If I’m recalling information, this happens in the form of images. I can pull up multiple images and videos at once in my mind, but I have difficulties communicating the relevance of all of those things quickly. If I’m not “on”, my responses get mixed up and I’ll get distracted by prefacing a semi-relevant story/article/video/scene, or the sentence I come up with is the point of all three of these at once but it doesn’t make sense unless you know all three of the things I’m talking about (here’s looking at you, babe). By the time I get to the grit of it I’ve already forgotten the point. Because of this I tend to remain kind of quiet.

There’s a beauty of being quiet though. A magic, if you will, to listening to the world around you. The people around you. Everyone has such an amazing story to tell. Can you tell yet where this is going? I love to listen.

In my youth, my parents made sure to instill on me that it was very important to listen. “Have initiative,” my dad used to say. I asked what that meant, expecting an answer that I was used to from mom (which was “go look it up, the dictionary is in the hall”), but he clarified, “It means that when you see something that needs to be done, do it. Don’t wait to be asked.” I remember thinking about this for a moment. I remember thinking that that was very efficient, but not knowing how one would be able to tell if something needs to be done if they can’t see it. I didn’t ask though, my dad always seemed to know what needed to be done next, with no seemingly rhyme or reason. Still, the concept stuck with me. I figured that one day I would understand. I stayed quiet, and listened.

I had a certain trust in my parents for good advice. I remember even further back, randomly asking my mom if other adults made fun of her for something kids were teasing me for, and she said no, they didn’t. I connected this “Social Rules” question to the box of “The Things They Say in Movies”, and paired it with the phrase, “kids are cruel.” I remember understanding then that the rules of children were not the rules of man, but not knowing how one would be able to tell when the rules of children applied and when the rules of man applied. I didn’t ask though, sometimes my mom would be too tired or too busy being amazing and raising four kids to talk with me about things sometimes. Still, the concept stuck with me. I chalked it up to, “One day I’ll figure it out.” I stayed quiet, and listened.

It seems that as I age, I can recall the most important advice I’ve ever received in the most important possible times. I feel the best way to describe it would be like if you were on fire and you remembered to stop, drop and roll. Where would I be if I hadn’t listened? In the movies, any character that leaves home, always eventually returns home, because they don’t understand that they themselves are home.

And yet, how many times have I understood someone was sad, knew that it was my turn to cheer them up, but I didn’t know how?  I feel the guilt of knowing that I have to say something, but… how can I say something if I don’t understand how that person feels the way they do or what the other person’s actions mean? How can I have initiative if I’m stunted on how to help? What am I supposed to do?

When I try to get into the mind of someone other than myself (“If you want to catch a Jew, you have to think like a Jew,” Hans Landa Inglorious Bastards), I can only do so if I have an emotional investment in this person. This is because all my associations are boxed up, and I have a separate yellow colored timeline in my head, and I have to know each interaction’s date and relativity to the calendar so that I can see what happened that caused this specific person to harbor ill-will towards me. I can then work out the misunderstanding between us and we can move on as people. However, if I don’t know the person, I don’t have any information to make these types of associations, and it leaves large communication gaps. Certain things are always off limits of course, but what about when the person I don’t know just senses I’m someone to trust? I just stayed quiet, and listened.

Becoming emotionally invested in a person is a long and rigorous process for me. Once I’ve determined that the person is a nice person, I have to piss them off real good one time to determine what they look like when  they’re angry, how they act with me, are they still respectful, did it change our friendship, etc. Only after I know that they are safe to be myself around can I actually trust their advice. Their advice however, directly translates to the role assigned by that person. I become Joshua in those moments, I can hear his voice come out through mine. I become my mother, her voice and sharp tongue either becoming my own or staying alive in me. In emotionally investing myself in a person, I allow them to impress upon me something they know, they are, or what they’ve done. I allow them to encompass me when I need them the most.

I used to believe that the sighs my grandma did in the car were on purpose because she wanted me to talk to her. If that was the case, why didn’t she just say anything? She’s the one who wants to talk…etc. Did you know that sighs like that are automatic? It’s to keep your body from suffocating out of frustration. I used to live my life in the hopes that everyone would eventually figure out to leave me alone.  This never happened, because that’s not how life is. And ultimately, it wasn’t what I wanted.

As humans, we crave interaction and approval of our tribes and families. I learned that it was about enjoying the time with others and resting in my off time, not painfully coutning the minutes before it was socially acceptable to go to the bathroom (for the third time this evening), and counting the hours until it was time to go.I learned the positive side, the love side, the side I was always afraid of, yet relied so heavily on. Why did I take such an adversarial position… with regards to talking to my grandma?

I need social breaks and communication breaks a lot. There’s a lot going on in a conversation. I can see all of the different movements in the face and body, and all of the incoming visual stimuli sometimes gets confused with the incoming auditory stimuli and my responses get mixed up. I can accidentally respond to the person’s feelings instead of what they actually said. Sometimes this works in my favor and we become closer. Some people challenge that they aren’t so easy to read. I can also accidentally respond to a completely wrong idea based off an incorrect processing of what the person is trying to say (for example, if the certain parts come in my head backwards then I might think you’re against something when you’re actually the opposite). I wish that talking wasn’t so hard for me. Perhaps the adversarial position was one of exhaustion, impatience, lack of self-control. As I age, I find that I can control myself more, and that has made me so much happier in my life.

I don’t want to have social anxiety, but I do. It comes with always being misunderstood and wishing I could explain. I cope by telling myself I’m a queen, and royalty doesn’t pay the game of feelings. That it’s always best to be diplomatic. It also helped to, you know, learn to explain (ha).

One never knows what’s going on with another person. It’s important to listen to others. If someone is trying to impart their wisdom on you, it shouldn’t be looked at as being imposing. Some people just want to help, just want to offer you something. They don’t want their interaction with you to be for nothing.

They want your approval of them. We all want approval from each other. Everyone appreciates acknowledgement. The box of everything I know about humanity in the void is a large one. I don’t always have access to it, so conversations in real-time puzzle me. In regards to myself as a human though, in order to prevent most confusions, I make sure that I live my life as nice as I can be, as generous as I can reasonably be, and with as much love as possible in my heart.

To be human is to love, and love is pain, and to love anyone is to know that you will be hurt by them sometimes. Life is about forgiveness and truly allowing yourself to live in the happy moments, because eventually you will hurt, and those memories of yourself being happy is what you will cling to when you are in pain. The stronger your arms are, the harder you can cling, and the easier the pain will pass. Remember to be strong and you will never have to worry about the pain carrying you away.

 


 

Click here or here for more personal thoughts.

Beating Self-Isolation and Negative Thoughts

I’ve been secluding myself from my friends and family and have been unusually internet quiet.

I haven’t really been texting back, I haven’t gone anywhere. I see my friends once every couple of months, I don’t really talk to anyone at work (save for a funny comment every hour or so), I haven’t posted on Facebook, my twitter feed is basically retweets, and my Instagram has been stagnant (save for a recent post where my husband and I suggested we were going to steal a child).

I haven’t really written too much, and I haven’t painted anything since that apple in August.

I’ve basically disappeared.

My husband has been worried about me, and I’ve decided to say something about my silence.

I’ve been depressed.

I haven’t had the will to reply or create. My thoughts are a carousel of self-doubt, panic and anxiety, and every time I would get an idea, I would tell myself that I don’t have anything to say on the subject.

Except that I’ve had loads to say about a lot of topics and I’ve been oppressing myself.

I’ve been silent because I don’t like myself. I crave the self-acceptance I had when I started this venture, and although feelings are a choice, I haven’t been able to jump out of this spinning wheel of madness.

I tell myself that I can make a difference with what I have to say, only to reply to myself that my viewpoint doesn’t matter.

I’ve been struggling with thoughts that I don’t matter.

Social situations have been making me extra nervous, and I hesitate to engage. I don’t necessarily wish to be sought out, as I feel like my feelings are contagious, and I would hate to spread my negativity.

My period of artistic solitude has turned into a maddeningly depressive isolation.

Shaking myself out of it isn’t doing any good, but I wanted to tell everyone who feels this way that you’re not alone.

It’s dangerous to act on the feelings that self-imposed isolation brings with it. If I acted on the thoughts that I don’t matter, my actions would surely lead to my suicide.

It’s about fighting yourself, for yourself, until you win. Sometimes to win you need medicine. Sometimes you need therapy. Sometimes you need friends and family to center you again. Sometimes you just need time to collect your good thoughts and put your brain back in order.

Whatever it is you need to win, seek it out. You’re worth it.

Isolation breeds social anxiety, which makes socializing feel awkward, and makes you want to socialize less and feeds the thoughts that come with isolation.

To beat the crippling anxiety of wanting to socialize and the debilitating self-doubt, you have to push yourself out of your comfort zone.

For me, pushing myself out of my comfort zone is writing about why I haven’t been writing and pushing myself to do the things that need to be done. The more productive I am, the better I feel about myself and the less likely I am to fall into old patterns of seclusion.

If you or someone you know is having suicidal thoughts, you’re not alone. Call the Suicide Prevention Lifeline and speak to someone.

Aspie Spouses: How to Show the Neurotypical in Your Life You Love Them (by Using the Five Love Languages)

I remember when my boyfriend (now husband) told me he couldn’t feel my love. I had no idea what he was talking about.

“I do love you,” I said matter-of-factly. “What does that even mean?”

I panicked. How can I get him to feel my love? I was touching him, we were spending time together, what more did he want from me?

“I don’t know,” he said softly and sadly, “I just don’t feel it.”

“Okay well stop” I said stupidly. I wasn’t very good at making people feel better then.

He didn’t say much more on the subject, but that conversation stuck with me. I wanted to be with him, and I wanted him to know, so I set out on a mission to get my boyfriend (now husband) to feel my love.

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I had no idea where to start. I knew that the love was there, so I decided to start with a google search, and that’s where I found out about this nugget of relationship gold: The Five Love Languages.

You see, neurotypicals have different ways of wanting to be told they’re loved.

I always assumed that the words “I love you” meant that he would understand that I loved him, but some people like actions better and others like gifts and stuff. So I took the five love languages test to see if it was right about me. It was. I like physical touch: cuddling, heavy pressure (but not light touches) and being squeezed. I had my boyfriend (now husband) take it that same night.

It was a floodgate. I learned so much about him. I didn’t realize we didn’t speak the same love language, and the way he wanted love was not the way I was showing him I loved him. His love language is Quality Time. I had to Google what that means, but don’t worry I’ll tell you.

Why Romance is Important to Your NT Spouse

Intimacy is one of the most important aspects of a relationship because it provides a safe closeness between two people. Intimacy is important to every relationship. But what is intimacy, and how can you get closer to your spouse? To start, any expectations that you or your spouse have for each other must be verbalized. Us aspies process emotions through words and not subtle cues, and that makes it so much more important to communicate with each other. It’s impossible to be a team if the players aren’t on the same page.

The best way to increase intimacy in your relationship is to increase romance. But how do you know which romantic ideas are going to make your spouse happy? That’s where the Five Love Languages test comes in.

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Getting Started 

I suggest both of you start by taking this test first. I recommend you take it by yourself, but they can take theirs with or without you, as long as you both come together when you finish. I’ll tell you how to compare your answers. Set aside time for both you and your spouse to sit together with a pen and some paper.

As the aspie, before you compare your answers I should warn you that this conversation is an emotional minefield. It’s an explosion of good emotions, this is true, but an explosion none-the-less, and it’s important for you to know about your own preferences before you can learn about your spouse’s. This will help you from getting emotionally overwhelmed and shutting down during the conversation. Know what you want from your spouse and practice communicating that for when the time comes to talk and exchange answers.

Once you’ve both completed the test, ask each other the following questions:

Was the test spot on about what your love language is?
Is there anything I do now that hurts your feelings?
Is there anything I do now that makes you feel loved?

When you compare your answers, make sure you take notes of what your spouse says. Listen very carefully for things your spouse says they like, want more of, want less of, and would like to do or try, and then write that stuff down. Don’t hesitate to ask them to wait while you write. They love you and they’ll be happy to wait.

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Here is a breakdown of what each language means, and examples of speaking in that language:

Quality Time

Quality Timers enjoy feeling like they have your focused attention. Eye contact is difficult for us aspies, but they extra love it, so if you can stand it for a little while I highly recommend doing it whenever possible, it makes them smile and feel good. If it burns though don’t worry about doing it, there are other ways of showing them your attention, like conversations and dates. Make sure to ask about your spouse’s day. Here are 36 questions you can ask your spouse that are proven to increase trust and intimacy.

Physical Touch

Physical Touch doesn’t mean just sex. Physical touch is a nonverbal sign of love: a shoulder rub, holding hands, touching legs, footsie. You don’t need a lot of words for this one, but if your spouses love language is physical touch and touching is a no-no for you, then you have to ask yourself how much of a compromise you’re willing to give. It’s important that you are aware of what you’re willing to tolerate and what you aren’t. If holding hands with your spouse isn’t painful and just annoying, then think about how good it makes them feel. Compromises should include comfort for both parties.

Gifts

Gifts can be from anywhere as long as they are from your heart. If your spouse like clocks, make one and give it to them. If they like plays, buy tickets for a date night. Use a calendar to plan out gift giving. Start with once every couple of weeks and adjust as necessary. Don’t forget to give gifts during special occasions. Make sure that if money is an issue for you that you don’t spend too much. Here are some good ideas (here too) if you’re not sure what to give.

Words of Affirmation

Words of Affirmation means that your spouse likes to hear how much you love them, what they mean to you, and how much you appreciate them. They also like it when you say nice things to them about how they look or what they can do. This one can be tricky for us to do randomly because of our communication problems. Tell your spouse something nice and thank them whenever they do something that benefits both of you.

Acts of Service 

Acts of Service means your spouse likes it when you do stuff with them and for them. This shows your spouse you care. Easy ways to do this would be to take your spouse’s car for a wash, gas or maintenance. You could wash the dishes when you see the sink is full. Breakfast in bed is another good one. Most Acts of Service don’t cost a lot of money, so if that’s an issue for you you’re in luck.

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One thing to keep in mind if your spouse is talking using strong words or a harsh tone: don’t instantly assume they want you to fix their issue. That means don’t ask them what they want you to do about their problem. Ask first if they are just venting. Venting means they want to talk, but they don’t really care if you have anything to say. Neurotypicals like to talk out loud when they are upset, but don’t necessarily want an answer to their problem.

So when your spouse confirms they are venting, don’t offer a solution. Offer sympathy instead. “I’m sorry, how did that make you feel?” can go a long way. When neurotypicals say we don’t have empathy, they really mean we don’t show sympathy, so this one little thing will get you far in social skills, not just conversations with your spouse.

Relationships between neurotypicals and aspies are very complicated, with lots of communication and lots of compromise. It’s important for the neurotypical to educate themselves on autism but it’s equally important for the aspie to educate themselves on neurotypicals if the aspie wants to be in a relationship with one. An AS/NT marriage is a marriage of two separate worlds, and learning about each other’s world in a positive environment allows for self awareness, open-mindedness, and lots of love, as long as both parties are willing to put in the work to be together and love each other.

Autism and the Hispanic Community

The quickest growing population in the United States has the lowest autism diagnosis rates, according to several studies, and the big question on everyone’s mind is: Why?

Well, according to pediatricians across the country, the primary reason for low diagnosis rates in Hispanics is due to the confusion of the questions on the screening questionnaire.

The solution presented to this is a verbal Q&A between the doctors and the parents of these children. Yippie for future kids on the spectrum!!

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But wait, what exactly does that mean?

It means the answer is to why Hispanics don’t have higher diagnosis numbers is because of language barriers and semantics. As great as this new research is, it does open the doors for a whole mess of questions, especially for teens and adults on the spectrum.

Right now the statistic is 1 in 68 kids has autism, up from 1 in 100. That doesn’t mean there isn’t an epidemic, though. We’re just getting better at recognizing it. Low Latino diagnosis isn’t limited to the United States though. Currently, diagnosis numbers range about 1 in 115 children in Mexico. Compared to 1 in 68, this is quite a gap.

Undiagnosed kids still grow up to be autistic adults, and a lot of them get married and have babies. In fact, many adults learn about autism when they’re raising their children and their children are diagnosed.

The autistic adult world statistics are very sad and scary, with 1 in 63 newly diagnosed adults having suicidal thoughts. Finding out about autism as an adult makes for a complicated life story, filled with sometimes horrifying revelations about one’s own childhood experiences way later in life and catastrophic misunderstandings.

So what about the undiagnosed autistic Hispanic teens and adults who are past the age for a verbal screening for autism? If there are verbal misunderstandings in autistic patients and cultural barriers in regards to language and semantics preventing a diagnosis of autism, then what happens when autistic Hispanics who don’t know they have autism… go to the doctor?

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How Does it Feel to be Undiagnosed?

As a teen and young adult, I lost many friendships because my responses were taken the wrong way or I said something too stupid for them to think it wasn’t on purpose. I got better at catching offense on my feet, but I hated living with the anxiety of knowing that I might say something offensive at any given moment, and having to be socially prepared for my own “stupidity”. I wanted so desperately for people to think I was a nice person, but I was just known as bitchy and bossy, and you could only see my “care” if you knew what it looked like. I will say this about myself though: I hate being misunderstood. Even if it took a fight for you to understand me, I made people understand me, because I wasn’t coming from a bad place and to me, people HAD to know that.

I was a Hispanic child with no diagnosis and a whole mess of weird issues. I knew I was different from the kids at school, because I was always lost on social situations. But I was book smart, and I would read six fiction books or so a week. I learned so many different words for so many different feelings I always had, but I didn’t understand social nuance in a way that allowed me to communicate anything unless I was upset or frustrated. Once I got mad enough, the words would flow, and I didn’t have the emotional maturity to tailor myself or sometimes even feel apologetic. Once I got out how I felt, the anxiety of trying to get all my words together went away and I felt ten times better. Most of the time, I wasn’t even mad anymore. I didn’t know anything about mental health disorders.

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How do Hispanic People on the Spectrum Fall Through the Cracks?

My parents never took me to a psychologist. I was too much like other family members, so I was given coping mechanisms, not medicine. I appreciated this so much, because it made me stronger, but I can’t help but wonder what would’ve happened to me if I got my diagnosis sooner instead of later. Would I have realized my talents sooner in life, accepted myself sooner, loved myself sooner, instead of wasting so much time trying to fit into a world that wasn’t made for me?

A diagnosis makes life easier on the patient, but because of the burden on the family people of importance are saying they aren’t sure now how beneficial having an early diagnosis is. In other words, having an autistic child makes life harder on the family, because coordinating doctor visits and therapy, along with handling meltdowns and social misunderstandings makes life more difficult for the parent.

My parents didn’t take me to a psychiatrist because life is hard and they were divorced. They both just corrected my terrible social skills as I messed up. And although they handled that very differently, they loved me for who I was.

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Being Undiagnosed as an Adult and Going to the Doctor

I went through a summer before I was twenty where I felt nauseous every time I ate and a lot of times I would threw up. I went to the doctor, and tried to explain my symptoms to him. He said I had Irritable Bowel Syndrome. Irritable Bowel Syndrome is a disorder that affects the large intestine, with symptoms including diarrhea, constipation, cramping, bloating and gas. There is no known cause. I was confused as to why he thought my problem had to do with my large intestine when my primary reason for visit was vomiting. From my stomach. I did my homework and found out that a diagnosis of Irritable Bowel Syndrome is basically doctor hack for giving up on why your belly aches, because it is actually an imbalance of gut neurotransmitters. Eventually a nurse practitioner diagnosed me with GERD and a hyperacidic stomach.

Another time, when I was around 24, I went to the doctor was because having trouble eating. Even the thought was making me nauseous and a few times I threw up. When he asked me what I ate that day, I answered, “A bag of chips.” For some reason, he thought that meant I was anorexic instead of the host of other things it could’ve been. In talking with a nutritionist, it was uncovered that I was experiencing quite a bit of stress that was exacerbating my previous GERD diagnosis, and that I needed to eat smaller and more often. Alexithymia is the worst.

Did I mention that people on the spectrum often suffer from gastrointestinal disorders?

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What can Physicians and Latino Patients do to help each other?

My advice to physicians? Talk to your patients and read. So quickly doctors rush to treat the symptoms and not figure out the cause. Observe your patients demeanor, review their medical history, and pull out your textbooks. There are too many specialists in the field and the generalists don’t know enough. Do your research about cultural preferences.

My advice to patients? Speak up. It doesn’t matter if you’re autistic or not. Everyone is a patient at some point or another, and no one knows your body like you do. If you’re feeling pain or you notice new or weird patterns with your body, it’s up to YOU to tell your doctor. People die unnecessarily every day because this kind of information is not exchanged. Tell your doctor about any weird symptoms you might have during your annual physicals.

Undiagnosed autistic Hispanic patients need to be treated with respect and listened to, just like neurotypical patients. The Latino population needs doctors who will show us that they are on our side. Verbal questionnaires are a great place to start.

America as a society is just barely understanding how mental health and medical health are actually hand-in-hand. People are starting to figure out that there is no such thing as normal and every day research is getting closer and closer to better treatments for people with autism.

Autism and The Importance of Social Skills

There was a recent study where researchers used a fMRI machine to study brain regions responsible for social abilities on people with autism before and after a five week social skills camp (one hour, twice a week).

The results were groundbreaking. Social skills training actually does help improve emotional recognition. That means that teaching us how to interact with neurotypicals will make us better at noticing when we’ve upset them.

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Do you have any idea how huge this is? It’s obvious to us that this is the case, because we tell each other this all of the time in our support groups, but science has made it official with brain scans and experiments. This has been a great month for autism awareness.

Social skills play a huge part of our every day lives. People with autism often have difficulties interpreting others, causing misunderstandings. The sooner we learn the skills we need to cultivate relationships, the more successful we are as adults.

There is a lot of focus on making our lives easier by controlling our symptoms, but another aspect of autism is our difficulties with the social world around us.

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Bullying on the Spectrum

I remember elementary school like it happened yesterday.

In first grade, I made friends with this kid named Micah, who would translate different social customs for me. He was the first friend who would do this for me, and his social status protected me for a little while.

I moved a few times between second and fourth grade. I found it hard to make friends and I constantly faltered. The end of elementary school was tougher because I wasn’t sure about the other kids. I would think that they were my friends and they would make fun of me, and once I figured out they didn’t like me I would just stop hanging around.  Solo jump rope was what I spent recess doing.

Middle school was ruthless. We moved again right before sixth grade, and I remember my first day someone made fun of me for my accent and haircut. I stopped telling my parents when people were making fun of me because I felt like I was constantly complaining. We moved again and I managed to make some friends, who helped me navigate though teenage girl evil plots.

63% of children on the spectrum experience bullying. These children will become adults, and they need those support services now, not later, because the sooner that kids get the social support they need, the quicker they’ll progress to emotional recognition. We need to get schools involved with changing policies and advocate for these children. The more apt they are to recognize their peers’ emotions, the less likely the are to be made fun of.

This, combined with the anti-bullying movement, will produce peaceful, intellectual progression.

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Okay, so how do social skills affect empathy with autistic people?

Learning social skills IS learning empathy. We don’t want to hurt people’s feelings, the same way a student doesn’t want to fail a test. When the student cannot pass the test, the teacher needs teach the student in a way the student can understand. The very notion that teaching us about you will make us more apt to recognize your pain is the meaning of learned empathy.

The more skills I acquire, the more I’m able to see in “real-time” what’s happening with any one person. For example, I can see when someone is anxious because they’re shoulders are risen, quickened speech, flushed skin.  I just have to wait for a conversational exchange so I can hear if they are going to tell me about their anxiety or if the conversation is intellectual in nature.

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Learning social skills made me quicker and smarter. When I’m not anxious about the situation, my brain pulls information so much quicker. Anxiety always slows me down. I can’t think straight when I’m emotional, and emotional includes being anxious because I don’t know what to say or do.

When I was younger and less “empathetic”, I used to “comfort” people who were crying to me by saying I wasn’t sure how what to do about them crying. And I would say it awkwardly with my hands like sort of waving, and a half laugh. Then I would reach out my arms like I was going to hug them, and then pull them back over and over because I don’t like to be touched when I’m uncomfortable until eventually I verified if my next move should be a hug. It was a mess.

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Yeah, pretty much.

How to Help

Awareness alone is not enough. Neurotypicals have to educate themselves about autism and social differences to expect. People on the spectrum have to have acceptance. It’s a basic human need.

Change must be affected. In order for us to change the world together, we must first be willing to change ourselves. Both neurotypicals and autistic people alike must be willing to adapt our own thought patterns to those around us, and look outside our own perspectives. It’s important to accept each other’s quirks and flaws. Even if we aren’t born this way, we can learn.

Mindfulness is essential to change of the self. Practicing mindfulness has health benefits, social benefits, and emotional benefits.

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Are you on the spectrum? Do you force eye contact to make the neurotypical feel comfortable, even though it hurts and you’re suffering because of it? Do you refrain from stimming because you don’t want to seem weird, even though it’s tough to concentrate while holding it in? Do you choose to remain silent because you don’t want to make waves or be put on the spot, even though the subject is your special interest?

Don’t let social anxiety get in the way of you being yourself. In order to bridge a gap, both sides must build toward the center.

Are you interested in attending a camp like the one in the study? Here are some options:

http://www.myasdf.org/site/our-programs/social-skills-camp-scholarship-program/ 

http://www.veryspecialcamps.com/summer/social-skills-camp/  (list of camps around the country)

https://recsports.berkeley.edu/social-skills-camps/ (children and teens)

Panic Attack Thoughts

This is the writings of a random panic attack I had the other day. I don’t normally have these, because I’m aware of what I can do and when I should stop, but they do happen for me occasionally, especially if I’m trying to do too much and I’m starting to falter.


I woke up at 3:30 this morning to my husband’s kicking, and I couldn’t go back to sleep. I got out of bed this morning crying and feeling hopeless. I feel orange and kicky inside. I can’t think straight. I don’t know why I’m feeling this way. The pictures are memories of today and last night and move too fast for me to try and pinpoint what my body is trying to tell me.

I made it to work though. I fought with Josh, but I made it. I knew I was being difficult when I told him I didn’t know what was wrong or how he could help me, but that was the truth. I felt panic trying to answer. I know that means this is in my head.

I know I need to calm down. Logically, I can reason there is nothing different about today from any other day. Logically, there is no reason to feel this way. This keeps me from being this way to others. So far I’ve only been told I look sick. I feel like something is going to happen, but I don’t think that’s right and I don’t feel good.

I know my feelings aren’t right and that’s why I’m still at work, but I need something. I’m trying to figure out in my mind what it is, because I don’t think that leaving work is the answer. I can’t do that, I have so much to do. I’m harnessing my anxiety into working on my accounts, but I feel like this is life or death. Sometimes I can trick my mind into making this some sort of fun battle, but right now I feel like I’m in danger. I can’t do that fun thing because this feels super serious.

I feel a quiet calm when I write this out. This is confirmation to me that this is what I’m feeling. I’m familiar with the kickback of when it’s not and so far it’s absent.

Talking to myself helps. Talking out loud doesn’t. Talking out loud makes me feel like I’m crazy.

I reach a certain level of calm where my mind thinks it’s safe to express and I start to cry. I can’t get past that point, I keep having to bring myself back up to get it to stop, it’s easier to raise my anxiety into manually faking calm than it is to actually calm down and relax.

I can’t think completely straight. I keep looking at all the time I’m wasting. It makes me panic more. I should stop doing that. I feel hunger in my stomach and fluff in my head. I’ve been needing so much food lately and I gained like 10 pounds in a week and I don’t know what to do. I’m so stressed. Even when I’m doing the things I love it’s been feeling laborious. That’s a sign of depression, which I was diagnosed with a couple months ago, but my life is awesome and I don’t know why I’m depressed. Chemical imbalance.

I don’t want to have all of this shit wrong with me. Why can’t I be normal-

Old demons coming back to bite. I’m not normal. Just let that go. My mind is picking anything to get me to react. It feels like my mind is trying to get me to do something about how I feel.

I feel like crap. That’s probably why I fought with Josh this morning. Actually fighting feels like that might help, but who would fight with me? I’m a grown up now and that’s not acceptable unless you’re in martial arts and I don’t have the money for that.

Also that doesn’t make sense either because it would deplete my resources and could potentially make things worse. The less resources I have, the more emotional I feel, the less control I have.

Exasperation is starting to rear it’s head. That comes with not being able to psychologically control my neurological problem. I need to figure out what physical thing will help me before I lose my shit. I’m going to try and get something in my stomach. I said I was hungry earlier.

Okay I’m snacking on this thing called “That’s It” which is a fruit bar from the vending machine. I feel calmer, more in control. I can make it. I wonder where the calmness comes from, if it comes from my mind and feeling good about taking control, or if it comes from my body’s needs being met.

I have no idea what sparks these things on. Sometimes I’ll be playing my clarinet and I’ll remember things from the past that hurt me and I get all glazed over. My husband always asks me what’s wrong, but I never know how to answer. It’s always different memories from different times in my life, coming through so vividly that I momentarily can’t shift them aside. Times like that and times like now make me feel like my mind and body take turns attacking my well-being.

Just because I feel better and calmer though doesn’t mean my hopeless feeling has gone away. Everything seems to be looking positive for me, and for some reason I’m scared of it. It feels like I can’t do everything that life has in store for me. I don’t completely understand why, but I feel it and I hate it and I don’t know how to make it stop.

I have the desire to do something about it. I need to do something.

What does that mean though?

If I still need to do something, but I feel calm and in control, what should I do?

Wait, if anxiety makes me question, “what do I need?”, and all my needs are met, what’s the answer? A problem.

I felt the kick, right now I need to work, but I can’t focus on that and I have to pee again. I can’t think straight still even with food and water and I feel panic over everything. It’s not my meds, it’s me, so I don’t even have that.

Racing thoughts just make it worse. I need to calm down my mind with focus.

Harnessing anxiety feels like catching a pissed off horse. It’s frustrating for you and the horse because you both need something, you need the horse to calm down and the horse needs you to acknowledge it’s feelings. It seems like an easy puzzle piece solution of using your skills to calm the horse down, but it’s harder than that, because the horse doesn’t trust you and it’s instincts are telling it that you mean harm and can’t help.

My anxiety demands that I pay attention to it, demands my time, my resources. Maybe my depression comes from feeling out of control and not feeling productive. That makes sense. I feel bad about myself for not being able to keep up with everything I need to be keeping up with. That makes sense as to why I feel hopeless too.

I suppose I’ll take these feelings and try to do something with them. Writing calmed me down enough to move forward, but it’s not enough to make me feel better.

I have work to do, always something to do, so I’ll just deal with it for now, I guess.

Maybe I’ll get something done and get to feel accomplished.

AFTERNOON UPDATE: After eating, drinking caffeinated tea, vitamin B12, shutting down for a little while and re-evaluating my demeanor, I was able to completely calm down 🙂  I don’t normally experience that hopeless feeling with panic attacks, but I know that does happen sometimes with my disorders, and it does help me to know that there are things I can do to help myself <3


For more information about anxiety and depression, visit:

http://www.anxietycentre.com/anxiety-attack-symptoms.shtml

https://www.adaa.org/understanding-anxiety/panic-disorder-agoraphobia/symptoms

http://www.calmclinic.com/anxiety/attacks/symptoms-and-signs

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Yeah I’ve Thought About It: Autism and Suicide

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A recent story stated that 66% of newly diagnosed adults with autism/Asperger’s contemplate suicide.

Let’s think about that for a moment.

In all of the concerns about the numbers, I found an article that has really good ideas about why we contemplate suicide, but the point of view of an NT (neurotypical – someone without autism) kind of makes me feel invalidated. A molehill is a mountain to an aspie? Come on. I’m not small enough think a molehill is a mountain; a mountain is a mountain, and just because you have tools to climb it and I don’t doesn’t mean that my tools are something to look down on, but I digress…

I was officially diagnosed at 25. I would be considered a newly diagnosed adult, but for me the thoughts come because I feel like a burden, and I’ve always felt that way. My first thought was when I was 13. Is it possible that it’s not just newly diagnosed adults? What about diagnosed teens? Children?

It’s easy to think, “I’m the problem.” I can think of so many people in my past who made me feel like I wasn’t worth their time. I can think of situations in the present that I’m not prepared for mentally, sometimes those make me think I want to take some kind of action like that. I understand this to be a chemical imbalance, but a lot of people don’t.

I’ve acted in ways during meltdowns that have made suicide seem like a viable option in my mind. I’ve had short thoughts, like “just drink the whole thing, do it, quick”, and long thoughts, “does life insurance pay out if it’s obvious you killed yourself?”.

I learned early though that suicide is never the answer. I saw the affects that taking your own life has on loved ones on TV, and I reasoned that if so many shows posed the experience as, “How could so-and-so be so selfish?” then that must be how suicide is viewed, as a selfish act. I decided to never to put my family through that. While I know now that suicidal ideation is a symptom of a larger problem, I’m glad I learned this lesson early.

Every single time the thought has crossed my mind, I’ve conquered it, to the point where it’s just a “helpful” reminder that I’m still alive and thriving in some ways. Particularly in the way of surviving myself. I refuse to allow myself to self-sabotage (basically, I just think about everything twice before I do it, then I think of the most probable outcome), and that has led me to be successful for someone of my disabilities. NTs think with their subconscious, which means their conscious minds don’t have focus to recognize input, such as eye contact, body language, facial movements, etc. Their conscious mind only has to process what’s being said, making their brains much faster at socializing than ours.

Our brains and subconscious work differently than theirs, and our thought process involves word processing in lieu of subtle cues. The conversational problems involved with this type of thinking can lead to semantical disagreements and misunderstandings. We desire connection, probably more so than the NT, and the anxiety of confusion often causes us to be misconstrued as maybe aggressive, annoying, or intentionally confusing. (*side note, sometimes we can be interpreted as funny) This can lead to an NT being afraid, angry, confused, or curious by an our behavior, or lack of reciprocation. Most times they’re trying to talk in the feelings language, and subtle cues quicken the pace of conversation. We tend to feel sensitive at these types of exchanges. In our minds, we’re thinking, “don’t you see how hard I’m trying?”  

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I’m not meant for this!

More than once this breakdown has led me to feel like I’m an idiot, and then pissed me off. I’m a fiery soul, but not all of us are. Some of us are gentler and more susceptible to the rants of someone who seems to know what’s happening. Alexithymia strikes again.

Because we’re trying to figure out if we’re being annoying, being understood, communicating effectively, etc., using our ears instead of our eyes, we often miss or confuse visual cues by the NT person, which leads to more misunderstandings. People fear what they don’t understand, and hate what they fear. It often leaves us wondering, “Do Neurotypicals Hate Us?”

They don’t hate us though. They just don’t understand us, because it’s difficult for us to explain our emotions. That gap needs to be bridged, we can’t be walking around thinking they hate us and they can’t be walking around not understanding. It’s just not an acceptable predicament.

As an autistic person, I searched and searched for something I could do to help bridge this gap. All I found was that I needed to accept myself and my spouse needed to understand my needs. Self-acceptance is a steady and unconditional love of self, and was something I haven’t always had. And yet, there is no other way to co-exist, and that’s very real.

Self-esteem is based off of what you think of yourself. If you derive your self worth by what others think of you, it will be forever dependent on your behavior. This means that when other people judge you negatively for having a meltdown, you will feel bad about yourself. You will feel terrible about yourself for something you can’t control. What sense does that make? By accepting yourself, you are letting go of the illusion that you can psychologically control a neurological problem.

It’s important for the welfare of the person with autism to have self-esteem. Self-esteem influences everything we do, including hurting and killing ourselves.

If you or someone you know if contemplating suicide, it’s important that you/they don’t go through it alone. Here is suicide hotline:

National Suicide Hotline: 1-800-273-8255 via Psych Central

autism weighted vests

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Autism and Alexithymia

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What is alexithymia?

Have you ever been at a loss for explaining yourself? Or you just can’t put your actual feelings into words? Like you know there something wrong, and sometimes you might even know what to do, but the actual words aren’t readily available to describe how you feel. This is called alexithymia. Alexithymia itself is not a condition, but a symptom. A symptom that can sometimes wreck havoc on the patient experiencing the loss of words. I myself suffer from this, though as I’ve aged my “feelings” are more recognizable to me. Here’s an excerpt from my journal from two days ago:

I don’t feel so well. I’ve had a rough few days. I’ve had a lot of feelings and I’ve been emotional, which adds to sensory problems I have. I react aggressively.

Ugh. I can’t think. I can’t think straight right now. I want to write something explanatory, something worth a write but right now I don’t have any words. I want to express myself, but… I can’t even bring myself to asking how. I think there are so many ways but I don’t know how I feel about any of them. Writing feels good, but all I’m doing is explaining what’s happening in my head right now and not explaining any of the anxiety-

Anxiety. But from what?

Maybe painting might help. I’m looking at the file room painting I started a few days ago. The file room is where I keep my memories. I have a series that I’m starting about places in my mind. I don’t think I want to paint right now though.

Maybe sing? No, this is enjoyable, right now we’re watching Deadpool and my husband is drawing Maggie.

It took me 200 words to figure out I had anxiety, and then I didn’t even know why. I was sitting on the couch with my husband watching a favorite movie of ours and I couldn’t figure out what my problem was. I didn’t want to take it out on my husband, so I attempted to find a way to channel my anxiety into something constructive, but that isn’t the point.

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What does alexithymia look like?

Alexithymia can present itself as physical pain/distress, such as high blood pressure, joint pain, and chest pain. Clinically, it is thought to influence behavior, treatment process and outcomes due to the lack of patient recognition of emotions. There is only one study that suggests that alexithymia can be reduced over time with group therapy, guidance on recognition and communication of feelings.

How to help

If someone you know is experiencing this, it’s important that they are met with compassion and assistance. Alexithymia can lead to identity crisis, as having feelings but being unable to express or explain them can often cause the person to remain silent, and their pain and anguish ignored. If they finally reach the point where they are acting out behaviorally, it’s important to get the help of a mental health professional who might be able to assist with why the your friend or family member is suddenly acting irrational.

Wrongplanet is a great resource for people with autism and their families to come together and talk about the positive aspects of autism, and get advice and resources for the negative side of autism. A little acceptance can go a long way.

What to do when you can’t express yourself verbally

If you think you might be experiencing this, there are a couple of online tests that you can take to help you. Separate yourself from any outside stressors (environmental, conversational, etc.) so you can think clearly. This is an important tool to figuring out your feelings. Participating in a favorite hobby or relaxation techniques have also been found to help. Once you start to realize patterns within yourself (“I get like this every time xyz happens”), then you’ll be more able to express yourself in moments where you feel “like this”, and when “xyz happens”, you’ll be more in line with yourself to better explain your end of the situation.

In my marriage, we have breaks in heated discussion. This is because the more emotional I am, the less sense I make when I speak. When I start to feel like nothing we’re saying is making sense to me, I tell my husband I need a break. It also helps to dull down lights, sounds, smells and to wear comfortable clothing. Sensory needs must always be considered. After I have calmed down, I can coherently discuss compromises and solutions to various issues.

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I have found that painting, writing, singing, and dancing help me to make me feel better, or at least help me find what I’m trying to say. However, if you’re experiencing alexithymia you may be in the “rumble stage” of a meltdown, and it’s important for you to make sure that you don’t get overwhelmed by trying to figure out what your emotions are. If someone you know or love is pushing you past your mental limits in an attempt to figure out why you’re having a problem, it’s because they don’t understand this symptom. Due to the complex solution of their problem is needing more words and your problem is too many words, it’s important for both parties to realize that respect for both needs has to be met delicately.

Alexithymia is a complicated, yet minimally studied symptom of ASD, schizophrenia, depression, ADHD, and other mental health disorders. It’s important for the mental welfare of the patient that their needs to be respected. Just because someone can’t put their feelings into words doesn’t mean their feelings don’t exist, and it’s better for all parties involved for either understanding or outside intervention.

Here are some free hotlines for counselling in a crisis, but please dial 911 for emergencies:

Autism Research Institute: 866-366-3361

American Autism Association: 877-654-GIVE

Autism Speaks Crisis Response Line*: 888-288-4762


*I know, but that doesn’t mean they don’t have good resources

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