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.

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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)

An Autistic Reflection of Self Acceptance

Excerpt 08/26/2016:

I’m imaging this. I’m imaging conflict. My differences are the root of this. I accept that I have them.

But this is where it stops. I’ve followed all the paths. The reason I’m afraid is because I think I don’t understand because I didn’t understand as a child.

I’m not a child anymore. I’m an adult.

I’m an adult capable of telling the truth, writing the truth, and being the truth, and capable of understanding that everyone is different. Don’t be afraid to ask questions, Arianne. You know the answers.

You don’t have any bad motives, and even though yesterday you were wrong doesn’t mean you shouldn’t listen. It means you need to actually apply everything everyone has ever taught you.

Ask yourself first, because you probably have the answer.

Ask myself first, because I probably have the answer.

And if I don’t know the answer, I can tell the difference between a good, honest answer and a bad answer, and I know the difference between right and wrong.

I’m in charge of my own choices and actions.

I decide and I always decide to tell the truth.

Contentment is having all your needs met.

Anxiety makes me question, “what do I need?”, but if all my needs are met, why should I question?

Maybe that’s why some people don’t. Never stop asking questions.

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

I wonder if regular people use this energy to talk to each other and help solve each other’s problems.

Christmas 2002 I got the “Back in the USA” Paul McCartney CD. I liked to listened to it on my CD player while I pushed my cat around in a Winnie the Pooh stroller.

I found that the CD sounded like a memory. I heard a song, I don’t remember which one, but it caught my attention with it’s familiarity. When one of my aunts heard me listening to it, she laughed at me and told me I was too young to know who he was. I was 11.

I was 13 when my mom made me throw away the stroller.

If anxiety is fight or flight, two animal behaviors, the root of the feeling would be the response of the person feeling anxiety. So fight would be closer to a predator response versus flight is the typical prey response.

Both stem from fear. Fear of attack. Don’t be afraid of the fight.

….

She says I’m trying to give my understanding, but I need to accept intellectually…

She says you can’t describe what rain looks like to someone who’s never seen before… I can tell when it’s raining by the air pressure, the wetness, the smell… but I wish I could tell if it’s going to rain.

I just need to accept that I can’t “see” and I never will.

I need to stop apologizing for being myself. I need to stop being sorry.

 

More Autistic Reflections:

An Autistic Reflection of Sensory Overload and Focus

An Autistic Reflection of Societal Views of Mental Health

 

thoughts about bathes

I was thinking about showers and bathes the other day and I remembered something. I remembered one of the first times I tried to take a bath on my own.

I don’t remember the reason I took it was, but I remember I wasn’t supposed to. I was still at an age to be supervised. We were living in Abilene, so 1996-1997 I would guess.

I wanted to be independent, I suppose. I had already learned from mom that shampoo goes first, from another bath I wasn’t supposed to start that my mom finished, so I grabbed the the quart-sized black Tresemme shampoo bottle. I remember looking around the bathroom, part of it was a habit from when my mom washed my hair, but this time it leaned a little more toward not wanting to be caught doing something I wasn’t supposed to.

My mom would flip the bottle upside down and dollop the soap on my head, so I proceeded to mechanically raise the bottle upside-down over my head as well, in the hopes of replicating the size amount, and squeezed.

I knew instantly I squeezed too hard. The feeling on my head was way more than she used, and I realized I hadn’t accounted for how hard she squeezed the bottle because I wasn’t the one squeezing the bottle.

I furiously attempted to delicately gather the thick, grey onto my hands in a feeble attempt to put the excess back in the bottle. I tried to put it back through the flip-hole in the top, but it didn’t work. I sat there for a moment looking around with slimy, partially shampoo’ed hair and a handful of expensive shampoo, wondering what to do.

I’m a firm believer of “You got yourself into this mess, you get yourself out.” I don’t ever practice this with other people, I always provide my assistance, but when it comes to myself I don’t like to ask for help. I hate being rejected, so much of the time I don’t bother putting myself out there. And when I do, there is never an expectation that I will be reciprocated. Also, if I expect the reaction to be negative, sometimes I won’t even bother.

I knew that calling for help was going to get me in trouble because I wasn’t supposed to be doing that anyway, I was going to either finish this and be clean and my mom will be happy she didn’t have to bathe me, or I was going to get caught and still be dirty and my mom will be mad I did something that she said not to.

I don’t remember if I was caught on this bathe, but I know I was caught on other bathes. I think I may have been this age when I started bathing alone.