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!!


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 somber 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.

If there are verbal misunderstandings in autistic patients and cultural barriers in regards to language and semantics preventing a diagnosis of autism, what about the undiagnosed autistic Hispanic teens and adults who are past the age for a verbal screening for autism? 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. Still, 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 the wrong 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 in 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 mixed feelings I always had. Still, 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 for the patient. Still, 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 summer before I was twenty, where I felt nauseous every time I ate, and a lot of times, I would throw 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 the visit was vomiting. From my stomach. I did my homework and found out that a diagnosis of Irritable Bowel Syndrome is basically a 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 hyper acidic 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?


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 patient’s 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 everyday 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.


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.


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.


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.


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.


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.


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:  (list of camps around the country) (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:

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Yeah I’ve Thought About It: Autism and Suicide


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?”  


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

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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.


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.


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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Insurance Companies and Out-of-Pocket Costs

How do insurance companies determine how much you owe?


Let’s start off with a scenario: Your stomach hurts, so you decide to see your primary care physician. She takes notes and decides that a CT scan would be an excellent diagnostic test for you. Her office obtains the needed authorization and sends you to a radiology facility to have your test done.

At the billing counter, after your test, the radiology facility staff tells you you’re going to owe a $70.00 copay for the visit. They’re very friendly and confident, so you pay the copay, thinking that’s all you’ll have to owe because that’s how it works at the grocery store.

After two months of not hearing anything from the clinic about the procedure, you receive a bill in the mail from the radiology office for $400. What happened?


Now let’s take that same scenario and look at the “back-end”:

Once your doctor decided you needed a CT scan, she lets her office staff know to fax orders to the radiology facility. The Verification team of the radiology facility calls your doctor’s office to determine who is going to obtain the authorization; your doctor’s office decided to get it for the radiology facility.

Before your appointment, the Verification team “verifies” your insurance. This means that the verification department finds out the following: A) if you have coverage, B) what your benefits are (and if there is an authorization needed for your test), and C) how much you MIGHT owe.


What do you mean, what I might owe? Why wouldn’t they know??

Allow me to explain:

A) Coverage is determined based on either a phone call or an online verification tool provided by your insurance company. Neither way of verifying coverage is perfect. This could be due to job loss, spouse coverage, COBRA, coordination of benefits (multiple insurances), and the like.

B) Benefits are determined based on the most recent information available to the provider. Let’s say in this situation, you had a $500.00 deductible with your insurance plan. In the phone call to the insurance, the Verification team is told that for diagnostic scans, you only owe a $70.00 copay. What doesn’t always get translated are exceptions; in this case, the exception would be that diagnostic radiology scans are applied to your deductible. Information that the Verification team doesn’t know before the radiology facility rendering services to you.

C) The Verification team tells the “front-end” team (the sweet, confident people you actually meet and talk to) that you only are going to owe a $70.00 copay, not knowing that your insurance policy has that very minute exception. Not knowing that you’re going to get a nasty surprise in the mail.


I wish it was only $1.

After you have your service done, all your information is sent to the Coding team. The Coding team reviews your medical records, questionnaires, medical history, and medical report. The “code” the service based on what you had done at the facility and your doctor’s reasons for having the test. They see that contrast was used, only the abdomen was ordered, and you have no medical history of abdominal pain. The”CPT” code (the procedure code) they chose would be for a CT abdomen, which is 71260. The “ICD-10” code (the diagnosis code) the Coding team chose (in this case) R10.0, acute abdominal pain.

These codes are entered on a particular form (a “claim form”) that is sent to the insurance for payment. The insurance reviews the final charges and compares them to your insurance benefits. Over two months, your “claim” is processed by the insurance. The insurance representative notices a clause in your policy that diagnostic radiology tests are applied to your deductible. They calculate how much you’re going to owe based on what is called the “allowable” amount.

The allowable amount is the contracted amount of money between the insurance companies and the provider that the insurance is willing to pay to the provider. The retail price of this CT scan (these change per provider) is $757.00, and the allowable for this service (in this case) is $470.00.

It’s determined that you have not met any of your deductibles, and the copay doesn’t apply due to the clause in your policy about diagnostic radiology procedures. Since the allowable amount for your service is $470.00, this will leave you with $30.00 left on your deductible with the insurance company. So if you had another diagnostic radiology test, you would only be responsible for $30.00, and the rest of the service would be covered by the insurance because you’ll have “met” most of your $500.00 deductible with this first CT scan.

The insurance company sends both you the patient and the provider a document called an Explanation of Benefits (EOB). This document tells both the patient and provider how much the provider charges for the service, how much the insurance allowed based on their copy of the “fee schedule” (list of all charges they pay for and how much), and how much total the patient will owe. This EOB says you owe $470.00. Because you paid the radiology facility $70.00 and not your insurance, your insurance won’t have a copy of how much you paid to the provider. It’s up to the provider to send you a bill reflecting the information shown on your EOB.

$470.00 minus $70.00 paid at the time of service equals a $400.00 bill.


The healthcare process in America is atrocious. We all must try to do something. Tell your representative to support healthcare for all Americans, because you never know if you’re going to be the one to get sick and be stuck with a $400.00 bill you can’t afford because of your illness.

Get involved!

Click here to view the Patient Advocacy series!

My Emotional Support Dog Died

I’m not sure how I want to write about Maggie. I started off not being sure how to express myself. I knew I was sad, but the words were coming out right.

Maggie’s gone.

I wasn’t sure what I wanted to do. Maggie’s body couldn’t stay there in the entryway, we needed to do something, but doing something made it real. Doing something meant that soon I would never see her again. So maybe she was just paralyzed. Or sleeping very uncharacteristically. I shook her, but no response. “Maggie…” I called to her, looking for something, anything, to tell me she was alive.

Maggie’s gone.

That was the first thing I wrote. I tried to write about how great Maggie was, but that felt… real. I couldn’t think straight, I was just writing shit on the paper and hoping that I’d feel something. My mom was already on her way over, and there wasn’t anywhere else to put Maggie, so we called my mom and told her we found Maggie. She came over to make sure I was okay, and then she went home.

My husband and I took her to the house we’re buying, and we picked a spot that we’re going to call “Maggie’s Garden.” I had never dug a hole before, but my (very naïve) idea of digging was like Disney’s Holes, and the hole we had to dig was only half as deep as the one in the movie. Piece of cake, I’ll just sing the song and all the other digging songs I know, and we’ll get this done.

Maggie’s gone.

It hit me again while I was trying to dig. My husband was very expertly instructing me on the actual digging of the hole because it’s totally not like the movies, and it kind of sucks. But if I wasn’t digging my dog’s grave, I’m pretty sure I would’ve kicked that hole’s ass. When my father- and brother-in-law came, I asked them to help my husband finish digging. Maggie was still in the backseat, I’d been helping by holding the light and staying out of the way, and I was ready to be done. I knew I couldn’t deal with that situation right then and there, and I had no outlet. I felt trapped.

There was no Maggie to come home to.

I miss her. I miss my dog like crazy. I didn’t realize how much I depended on her for stuff.

That next day I called in. I didn’t want to get out of bed or do anything, and I was ready to cancel the camping trip. The only reason we still went was that I couldn’t stand being in the apartment, and I was prepared to run away from my problems. There was no reason to text or call anyone to watch Maggie. There wasn’t a Maggie for anyone to watch.

Maggie’s gone.

On the drive to the park, I kept having slight panics at everything and feeling nauseated and anxious and exhausted. I threw up halfway there, and my husband drove, and by the time that we saw the park sign, I was so happy I almost threw up again. I didn’t want to think about anything bad. This was a camping trip to get away, to talk, to work. Of course, talking meant that we would eventually have to talk about Maggie, and everything I was writing was either talking shit about personal space invader families on the river or theories on why she died. Everything I wrote felt like crap. I felt like crap. But I also felt free. Free from responsibility, free from social convention, free from judgment. I decided to bask in that because I could be sad about Maggie when the trip was over. There wouldn’t be a Maggie to come home to.

Maggie’s gone.

I drew a picture of my feelings during camping:


Pictured: My Emotions and my feelings on processing Emotions

I cried unceremoniously at the end of the trip, after a fight, I started about something stupid. Josh seemed to know I was crying about Maggie. He held me, and I felt better, and then it was time to go. It felt weird not worrying about needing to pick up Maggie. She was eight years old, and there were times when she couldn’t live with me, but there was always some part of me that knew she was safe. It seemed that part was absent on the drive. When we came home, the cat started yell-meowing at me because he was hungry. We’d left out dry food, and most of it was gone, so I fed him a can. I sat down on the couch, and after some time, he came and lay down in Maggie’s bed.


Pictured: Greta missing Maggie

I don’t know what to do with her bed or her stuff.

We had a bond. People do with their dogs. I named her after the planet Magrathea from Hitchhiker’s Guide to the Galaxy. Every time we watched the movie, she would turn her head when they called after the planet. She protected me, loved me, and her fierce loyalty was never lost on me. She stood by my side, and she always knew when I was in trouble or having a mental issue. She’d let me hug her if I needed to cry, she exercised with me, and we spoke our own language. I don’t even know how a dog would become like Maggie. And every time I think about that, I remember that there won’t ever be another Maggie.

Maggie’s gone.


When Sensory Overload Affects Focus

What is the “rumble stage” of a meltdown, and how can it be prevented?


I’m having trouble focusing right this minute.

I can hear four keyboards pounding and three computer mice clicking. Two people are on the phone, and two people are whispering. They must have gum or something, they’re making rattling sounds now. I’m having trouble focusing on my actual work because I can hear everything. I get bursts where I get flustered by all the sounds, and that makes my neck shake, and my muscles rush. That’s when my ears turn off. I use that burst of energy to type faster and think quicker until it ends or my ears turn back on. At this point, I can hear the sound, but I can’t process language very well. Words come in in the wrong order, and that messes with my understanding of the conversation. My headphones were charging, but they’re done now, so I’m going to put them in. This will help.

My mind is a fire hydrant. You can’t just flip the switch, or you’ll get a powerful, uncontrollable burst. You can only ease into it. There are processes and procedures involved with sensory overload. Oh, I love this song.


“OooOoh the wheel in the sky keeps on turning…” yeah this is my jam

My eyes don’t turn off like my ears do. Everything gets visually more intense, and I get overwhelmed by the brightness and color. I experience a natural intensity with color, as in every shade of green (and grey and yellow) on a leaf, so light becomes a factor with my vision. I get a headache from everything my eyes try to process. It’s very bright in here, and there’s a glare on everything. I have my blue-tinted sunglasses on, but it only helps so much.

I can see every color, hear every sound, feel the air pressure around me, the temperature. When I go without dulling aides, I feel like I’m getting to experience the world in the beauty I was meant to, with sweet bird coos and beautiful sights in all sizes. But like with Cinderella, the party does end at some point. I turn into Meltdown Monster if I don’t pay attention to my sensory limits. Headphones, sunglasses, and Ibuprofen restore my normality.

The air is cold on my skin right now, but my insides are warm. My skin is susceptible to temperature, so I get cold very quickly. I get hot when I get anxious or flustered, though, so I enjoy the flexibility that the everyday cardigan provides. Right now, rolling up my sleeves should cool down my stomach.


Reminder: Deep breathes, and concentrate

The fluctuation and intensity of my senses make it difficult to focus on the task at hand. I find myself almost always distracted by my environment, sometimes painfully. Unfortunately, increasing my focus medication dosage throws my senses into overdrive and go haywire with the extra input, making meltdowns more volatile. My spirit becomes fire, and after the flame has died down, regret seeps into me. I don’t like to be out of control, so I’ve learned that controlling the effect my environment has on my senses helps keep my embers from becoming a fiery flame. My brain doesn’t have that extra input to the process, and the excess energy can be channeled.

Right now, I have my headphones on, my sunglasses on, and my cardigan with the sleeves rolled up. I’m starting to feel peace, and focusing on the music helps centers me and gives me something to work around in my mind. I can feel my monster being soothed back to sleep by the sweet sounds of Journey’s talent.

I have a sensory fidget that I play with to distract me from the surges in my neck, and clicking the switch feels nice. I have space/galaxy looking one. Turning the joystick part reminds me of the controls on the imaginary spaceship that was the bottom bunk of my bunk bed. I put stickers on different parts of the headboard and turned the bars, and I would pretend I was having fantastic space adventures.

Ok, I’m starting to be able to concentrate. At the very least, I’ve been able to build a steady stream of thought that I can channel into working. This feels like a win. It’s so late in the day, and my medication is wearing off, so generally, I’m more prone to environmental stresses, but the combination I choose to calm myself down today worked.

I hate it when it doesn’t.

Click here to read more about how I learned to accept myself with autism.

For more information and resources for coping with sensory overload, visit:

autism sites

What is an ABN?

An Advanced Beneficiary Notice of Non-coverage (ABN) is a document from Medicare to determine responsibility of a procedure that might not be covered under Medicare. Occasionally, your doctor will send you for a test that Medicare might not cover.

The provider who verifies the benefits will issue an ABN at the time of service to let the patient decide if they want to proceed with the procedure knowing this information. The provider is not allowed to pick an option for the patient, so it’s important for the patient to know what options they have.

A valid ABN requires that you, the patient, sign that you understand the following:

-The service you are having
-The reason Medicare may deny
-The cost of the procedure
-Your options (there are three)

Medicare may deny your service for any number of reasons, including frequency limitations, unnecessary screenings, or medical necessity. If the provider is telling you Medicare might not cover the service, make sure you understand your choices:

Option 1: Option 1 is the most common option. This option means you want the test done, and the provider can bill Medicare, but you will be responsible for the procedure if Medicare doesn’t pay. Talking to the provider upfront about payment arrangements (if Medicare doesn’t pay) is the safest way to keep your account from going to collections. However, Medicare does have a patient appeal option in the Medicare Summary Notice. When submitting your appeal, it’s important to include your medical records and doctor’s orders. A letter from your doctor explaining the medical necessity of the procedure will almost always get Medicare to reverse their decision. If/when Medicare overturns their decision, contact the provider’s office for your money back.

Option 2: Option 2 means you want to have the test done, but don’t bill Medicare. This option could be a valid option for you if the self-pay price is cheaper and more affordable than the retail cost of the procedure. However, it’s important to ask the provider if they will let you pay the Medicare price. Medicare’s allowable is often even less than the self-pay price, and most providers will allow you to pay this amount if you pay in full at the time of service.

Option 3: Option 3 means you don’t want the test done at all. It means you aren’t having the procedure done and you don’t want Medicare billed. At this point in registration, you may have already paid your estimated amount. If it’s not possible for the provider to void the transaction, then make sure you get the phone number for the business office refunds department and have your payment confirmation number and medical records number ready. This will help the refunds department to track and refund your payment.

Utilizing Medicare resources is the best way for you to understand your Medicare Part B benefits and the options you have as a Medicare patient. This website will tell you about special restrictions, covered screenings, Part C plans and the like. You can also contact 1-800-MEDICARE, and they can answer any questions you might have about the Advanced Beneficiary Notice of Non-coverage.