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 →
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!!
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?
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.
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.
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.
What can Physicians and Latino Patients do to help each other?
My advice to physicians? Talk to your patients andread. 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.