Autistic Masking and Being Hispanic

There was a moment right when I first realized that I was autistic. Like a bright, shining bulb. And once that bulb was lit, it lit up a maze I didn’t even know I was in. A maze of emotions and discovering meaning within myself that I continue to navigate today. However, my internal discovery doesn’t change my outward appearance. This ‘eureka’ moment has led to so many answers to situations in my life, but it has also led to questions.

For most of my life, I’ve been a coded, but open, book. My emotions were a vulnerability that I bottled up, then shelved. I had a front that wasn’t really a front. I was cranky a lot, and spoke in a verbally aggressive tone even if I was saying something nice. I spent a lot of time not knowing what was going on because my attention was constantly shifting to my environment, and spent forever wondering what I was missing to be considered ‘nice’.

When I typed a social situation in Google, I was met with a plethora of forums, articles and groups focused on singular issues similar to the social situation I typed in. In forums, strangers comment on the person’s situation and I would glean from those comments and finagle an answer to my situation.  Each situation solution became a patch that was a social opinion of me, pieced together like a patchwork quilt. Sometimes I would ask my friends what certain actions or phrases meant to be better at socializing. It took up all my energy, and I still sucked.

I cared about social situations off-and-on depending on the situation until I understood why it was so important in the first place. There isn’t a fiscal logic to feelings, but there is an emotional logic. For example, if you hit someone, the emotional logical next action is that the person will be angry and hit you back. Whether or not that is the case depends on the emotions of the person you hit and outside factors. Depending on the context of who you hit and how, it might not even be a problem, like in a boxing match. Another example, if you hurt a friend’s feelings accidentally, the emotional logical next action would be to apologize. Again, whether or not you actually need to depends on how close you are to the friend and the severity of the hurt feelings. Some people feel better with just knowing you’re remorseful.

Emotional logic got more complex the more I learned about human nature and needs.

Masking is pretending to know what’s going on in a conversation involving facial cues, it’s acting “normal”, it’s hiding sensory pain so people don’t make fun of you. It’s the struggle with coming up with the “right thing to say” all the time, because it seems that everything you say is wrong. It’s being someone you’re not so people will accept you.

My ‘patchwork quilt’ of outward responses to society was actually part of the foundation of my mask. It’s a mask I still put on in unfamiliar territory, like camouflage in a recon mission. Continue reading

Advertisements

#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.

 

 

 

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.

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!!

jump-996210_1920

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?

black-and-white-1278713_1920

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.

day-of-the-dead-1868836_1920

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.

nerve-cell-2213009_1920

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?

apple-2391_1920

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.