Hispanic mother and daughter.

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 and 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 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 door 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 is 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 their own autism when they’re raising their children and their children are diagnosed.

The autistic adult world statistics are distressing, 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 revelations about one’s own childhood experiences and 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 foolish 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 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?

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 20 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 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 hyperacidic stomach.

Another time, when I was around 24, I went to the doctor because I was 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 I needed to eat smaller and more often. Alexithymia is the worst.

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

What Can Physicians and Latino Patients Do to Help Each Other?

My advice to physicians? Talk to your patients and read. Doctors often 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 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 there is no such thing as normal and every day research is getting closer and closer to better therapies for people with autism.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Jupiter Images.

RELATED VIDEOS


An old People for the Ethical Treatment of Animals (PETA) campaign is making its way around the internet again, almost 10 years after it was originally launched. In 2008, the Autistic Self Advocacy Network (ASAN) fought — and won — to have a PETA billboard taken down that linked drinking milk caused autism. In addition to the billboard, the campaign, titled “Got Autism,” also featured an article on PETA’s website, which still exists to this day.

According to PETA, “Anyone who wants to alleviate the effects of autism should try giving cow’s milk the boot and switch to healthy vegan alternatives instead.” The organization’s claims were based on two incredibly small studies, that looked at 20 and 36 children respectively. Since then, multiple studies have found the evidence linking casein-free (the protein found in milk) and gluten-free diets as a “treatment” for autism to be “limited and weak.”

The campaign appears to be brought back to people’s attention by Jack Monroe, an autistic British food writer who tweeted on Thursday asking the controversial organization to remove Monroe’s recipes from its site.

Less than a day following their tweets, PETA removed Monroe’s recipes from its site but has not taken down the original article or issued any comments regarding its campaign. Since then, others have replied on Twitter criticizing PETA and asking them to remove the campaign from its website.

The campaign’s resurfacing marks the third time people have protested the nearly decade-old campaign. The campaign made headlines again in 2014, but was not removed despite media attention.

Update: A spokesperson for PETA told The Mighty: 

This is an old campaign that is still on our website because we have heard from people who have said it contains helpful information. Many families have found that a dairy-free diet can help children with autism, and since the consumption of dairy products has been linked to asthma, constipation, recurrent ear infections, iron deficiency, anemia, and even cancer, dumping dairy is a healthy choice that everyone can make.

The Mighty reached out to Jack Monroe and has yet to hear back. 


My name is Hannah. One year and two days ago I was diagnosed with autism spectrum disorder — Asperger’s syndrome profile.

I had been trying to get a diagnosis since I was 17 years old. I was misdiagnosed with depression, anxiety (I do have anxious feelings but these are as a direct result of how I perceive the world due to my autism) and an eating disorder.

I have lost count of how many times that people have said things to me like “but you don’t look autistic,” “but you have a job,” “but you seem so normal.” People focus too much on stereotypes and don’t realize people with autism are as diverse as everyone else.

Since I received my diagnosis, I have been sharing my experiences on every social media platform possible. I want to stop people having the same problems I did. It is too common for people on the spectrum, particularly women and girls, to get misdiagnosed.

I used Autism Awareness Week to share my story on a local radio station and they shared an article about me on their website. This was great, but it is not enough.

Just because Autism Awareness Week is over, it doesn’t mean people with autism disappear. We constantly need to be aware and there is something much more important than awareness — acceptance.

A lot of people with autism use a technique called “masking” to hide their autistic traits and appear to be neurotypical. Our condition is not visible, yet we often still have the urge to hide it and pretend to be someone else.

I want people with autism to be free to be themselves. To encourage people with autism to embrace themselves rather than mask themselves, I started a new Instagram account, Aspie Aesthetic, to share my thoughts and feelings relating to autism in the hope it will open up a dialogue between me and other people with autism to normalize our experiences. I also hope neurotypical people will read my posts and educate themselves about autism so they understand us better.

I know I am only one girl and it is a big task, but I want to change the way the world sees us so the world is a nicer place for people with autism in the future.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by DM Baker.


This couple opened a karate studio to teach people of all abilities.

Read the full transcript:

This Martial Arts Program Is Karate Chopping Stereotypes

Kicking The Spectrum teaches people of all abilities Japanese Shotokan Karate.

Located in NYC, the adaptive martial arts program was established by David and Stephanie Rosenberg in 2010.

The program started as karate demonstrations for kids with disabilities at St. Mary’s Hospital.

After seeing how interested the kids were, David began teaching students one-on-one.

Stephanie, a Behavior Analyst, takes David’s curriculum and tailors it to each student’s needs.

Group classes can be as small as 2 to 5 students, allowing everyone individualized attention.

There are also classes that disabled and neurotypical kids can attend together.

“It is often that as a society, individuals are viewed solely on their external limitations.” -David Rosenberg

“However it is often forgotten that apart from their disabilities, these youth have the same general interests, energy levels and social needs as their peers.”

To learn more, visit kickingthespectrum.com.


As someone on the spectrum myself, I am a major autism advocate. I love to spread awareness and understanding. That being said, I had a very eye-opening conversation with a good friend one day. She mentioned something that made me realize one of the major issues in the autistic/autism community.

To me, it that there are many “neurotypical” people who are extremely open and willing to try to understand things from the point of view of someone on the autism spectrum. They are willing to ask questions and see things differently. Granted there are a few who are lost and confused and grasping what ASD means for their loved one. But most are trying to understand.

But it seems that when many people (not all, but many) on the autism spectrum are asked to do the same in return, there is a ton of resistance.

Don’t get me wrong. I have been this way myself in the past. I was definitely one of those people on the spectrum who didn’t even want to see things from the point of view of a “neurotypical.” To me, that wasn’t the issue. The issue was that no one understood me. I needed to teach them what it’s like to be on the spectrum.

But I believe this is a two-way street. It’s time to take responsibility and do my part to work with the rest of society. Just because I’m a little different, that doesn’t mean it’s their job to cater to me.

Maybe this means I need to figure out a way to be more patient and listen to what they are trying to say, even if I think I understand… maybe I’m misinterpreting things. Or perhaps it means I need to step a little bit outside of my comfort zone sometimes, like wearing a nicer outfit at a special occasion when I’m so used to my everyday clothes. I might need to be a bit flexible, and find ways to manage my anxiety when there is an unpredictable change in routine.

Yes, society should be understanding and a bit accommodating. And I see that “neurotypical” people are trying. Sometimes they struggle a bit. I’d struggle on my end, too. But if I’m a part of that society, I need to do the same for them. I need to try to be understanding of what they would like from me.

It’s only fair.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Garrett Aitken.


I’m sitting with Holden in our home office which we’ve painstakingly decorated with every piece of nostalgia we could find over the years. “This,” Holden says as he waves his hand vaguely at the walls, “this is what the inside of my head looks like.” I sit back and realize that although we’ve been married for over eight years, I’ve never understood my husband as much as I do in this moment.

Just last month Holden was diagnosed with autism, and while this diagnosis has answered some questions he’s had all his life, it has also opened a whole world to him that he wasn’t anticipating being a part of. While looking around at our all-too familiar office, I wait for Holden to be ready to talk. I get the feeling he has a lot of catching up to do.

Lyvonne: At what point did you realize you might have autism?

Holden: Probably about a month or two after we figured out that our son Cade might have it. I was doing a lot of research and things started to add up, for not only him but for myself as well.

Lyvonne: At the risk of sounding cliché, how did that make you feel? Realizing that you might have autism at 29 years old must have been a bit of a jolt to the system.

Holden: Um, really my age didn’t come into play because we didn’t know much about autism, so I was kind of confused. Usually when people think about autism they think of the stereotypes, people like Rainman or those kids that sit in the back of the class who don’t really participate or seem to be in their own little world. While I am neither of those, I was having a hard enough time understanding how Cade fit into that world, let alone how it was possible for me to be a part of that world as well.

Lyvonne: With the introduction of not using functioning labels like high or low when speaking about those on the autism spectrum, were you told where on the spectrum you actually sit?

Holden: The psychologist was actually quite surprised that I fell on the spectrum not as someone who would have earlier been given the separate diagnosis of Asperger’s, but rather as someone with moderate autism like that of our son.

Lyvonne: You talked about the research we did for Cade. What part of it really clicked for you and made you think “Wow, that sounds like me”?

Holden: To be honest I don’t know; I don’t remember back that far. I just remember as I was looking through all the Google checklists of “your child might have autism if” and thinking “wow, this reminds me of my childhood” or even “this reminds me of now.” Of course, at the time of the research, my attention was on Cade and so the thoughts about myself were just in the farthest reaches in the back of my mind.

Lyvonne: Was there something that really stood out from your childhood that just made things click? Once you got to the point of looking into your own diagnosis, I mean.

Holden: As I started going through the diagnosis with the psychologist, she started asking me a lot of questions that brought about memories from when I was a child. Things like going through all of these different social groups as I moved schools or districts, things most kids didn’t seem to go through.

Lyvonne: Were you able to look at Cade and his struggles and see your own within them? Either from your childhood or from your adulthood?

Holden: I don’t know if I necessarily saw myself in him. I really do believe in the saying that if you’ve met one person with autism then you’ve met one person with autism. Cade and I experience the world differently from each other, but I think I see some of the same loneliness in him and it really makes me sad. I hope for a better future for him.

Lyvonne: Seeing as you are experiencing the understanding of autism as an adult rather than in early intervention as a child, do you think that is affecting how you are approaching your own diagnosis?

Holden: Honestly, for me, I think as an adult I’m able to look at the fact that I spent 30 years not having the diagnosis and trying to make me work in the box of society. There is almost a script the rest of the world is going by and I feel like I had 30 years of ad libbing in the world. So now I’m seeing it’s OK to be me and there’s a reason why I didn’t get the same script as everybody else.

Lyvonne: Does that mean that, if given the chance to go back and change things, you wouldn’t choose therapies and interventions and would instead trudge your own path knowing full well there would be massive obstacles you’ll have to overcome?

Holden: I think instead of therapies per se, I would have just preferred having someone help teach me “translation skills.” if you will. I would want someone to teach me to understand things rather than to just conform to them. That’s kind of what my outlook is with Cade. I don’t want to force him to conform to the world, just learn how to live within it and understand others.

Lyvonne: Do you think you would be different today had you been evaluated as a child?

Holden: For me, that’s a trick question. You see, it would have depended upon my mother’s insistence or not on therapies. I’d like to believe that without therapies I would still be the same kid I was; I just may have understood why some things were harder for me. While with them I may have learned to conform and assimilate, but it may have made me a duller version of myself.

Lyvonne: I’ve noticed there have been a few changes in you since your diagnosis. Do you think those are directly related to you understanding yourself more?

Holden: (Laughing) As long as that’s a good thing, yes.

Lyvonne: (Laughing) Yes, of course it’s a good thing.

Holden: Like I was talking about earlier, I spent 30 years trying to make myself fit into the box of society and not having the feeling I could be me and that it was OK. Not that it’s not OK for everyone to be themselves, because I feel they should be who they are, I just didn’t feel like I fit in and I didn’t know why. Now that I do know and I know it’s OK, I feel like I owe it to myself to be me, to be comfortable being me, and to love myself.

Lyvonne: Since Cade’s diagnosis came before yours, do you have a different view of him now that you can understand him a bit more?

Holden: I don’t know that I necessarily have a different view so much as I now have the ability to understand where he might be coming from with things.

Lyvonne: How has your diagnosis helped you?

Holden: At this point in my life, there wasn’t a lot in terms of quantity that it could do, but it definitely has added to the quality. It’s helped me to better find myself and understand myself and my family.

Lyvonne: Looking back, were all of those struggles ultimately worth it in regards to where you are in your life now?

Holden: Looking back? No. They still bring about horrible memories and nightmares of a childhood misunderstood and lonely. I really wish I’d had the opportunity to know this about myself when I was younger so at least I could have understood it wasn’t my fault that I was different.

Lyvonne: Does that mean there is a part of you that wishes you didn’t know you have autism now?

Holden: No! I would never change knowing it. I’m just upset that I didn’t know it earlier. In reviewing a large part of my childhood both educationally and medically, it creates a certain resentment against those who from my perspective prevented me from being evaluated earlier on.

Lyvonne: You do take into consideration that it was the ‘90s and much of what we know now wasn’t even really a glimmer in the eye back then, right?

Holden: I do. But as I look through the documentation and my memories there were a lot of red flags. Maybe they might not have screamed autism to professionals in the ‘90s but it should have said “not neurotypical.”

Lyvonne: That makes a lot of sense. Is there anything you wish you could go back and tell pre-diagnosis Holden?

Holden: I’d go back and say “It’s OK. Don’t worry about the world’s perception and trying so hard to fit in. One day everything will come together and make sense.”

Lyvonne: Well, I think that is a wonderful way to wrap this up. But I’ll still ask, is there anything else you would like the world to know about being an adult with a new autism diagnosis?

Holden: I would want the world to notice that as someone who should have been diagnosed when younger but wasn’t until the age of 30 — not only can we get married and have families of our own, we can be successful in life and our careers.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Lacheev.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.