About Autism

Culture Sign with Arrrow

The Importance of Culture

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Culture is a very important part of life and a very important part of the development of people all across the world, especially people with autism.


One of the major influencing factors about autism is that as a young person, you don’t learn from observing people that you spend a lot of time with in the same way that a person without autism does. The reason for this is that a big part of autism is not having very solid social connections, of course, some people may have better social skills than others.


Typically, I don’t focus on the same things as a neurotypical person. I might look at different things that are happening around me and perceive them differently. A typical example is that someone with autism might tend to avoid making eye contact, and that’s because, to an autistic person, often the eyes aren’t as important as maybe the mouth or other parts of the face when someone is speaking. Even though a neurotypical person gains a lot of information from the eyes, someone with autism may gain more information from a different part of the face.


When you’re watching people around you, you’re learning different things, especially as you start to grow up and your mind develops. One of the big things we pass on to our children is our culture. We pass on to them how we interact with people, what values we hold, what is most important to us, what is not important to us, and how we think you should treat other people. People who are autistic often grow up with a different culture than the one of their own family. It’s not a specific culture, there’s no single, individual autistic culture. It just means that they have different reactions to the world and the people around them.


One thing I learned as my family moved around a lot and from living overseas is that there are so many differences in culture that every country, and every group of people, has their own culture. That is sort of what it’s like to be autistic. It’s almost as if you’re living with a group of people that grew up with a different set of values – a different culture from what you understand. You don’t know how they originated, where they came from, and you don’t really understand it.


You’ll often see that in support groups for people with autism that people understand each other a little better than they understand neurotypical people. You would think that if autism is simply an issue with having social interactions, then there would be challenges with everyone in these support groups. But when you put a group of autistic people, or at least higher functioning autistic people, together often they’ll understand each other in ways that they would never understand neurotypical people. It’s partly because they just have a different underlying sense of what they’re looking at and how they have experienced and are currently experiencing the world.

Three young men in swimming attire

The Autistic Swim Team that Proved Everyone Wrong

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This week on the blog, I’m sharing information on an Autism Awareness Month event. Avondale House is proud to host a free screening of the award-winning new documentary film Swim Team, which is an inspiring look at the rise of a competitive swim team of teens on the autism spectrum. 


Following three teammates on the cusp of adulthood, when government services become scarce, Swim Team is a portrait of diverse American families grappling with the problem of “aging out.” Over the course of a year, the film explores the overwhelming struggles they face and the triumphs they achieve as they strive for independence, inclusion and a life that feels winning.


The movie, directed by Lara Stolman, who has a 10-year-old son with autism, focuses on Mike and other members of the Jersey Hammerheads swim team, which was formed to cater to teens on the spectrum.


Swim Team was most recently screened in Austin at SXSW; and now they’re excited to bring the experience to the Houston audience. If you’re interested, you can learn more about Swim Team at the film’s webpageThe movie has been featured in the press in recent months, including articles in the New York Post, Columbia College Today and the Hollywood Reporter.


Avondale House will be screening this film on Friday, April 14 at 6:00pm at the Children’s Museum of Houston. While the event is free and open to the public, seating is limited so attendees must please RSVP here.


If you’re interested in sharing the word, feel more than free to pass along this information. If you would also like to promote the event on social media, you can contact Alyssa Purcell, Development Coordinator at Avondale House at alyssap@avonalehouse.org for more information. 


More info here: Swim Team Film Screening


My Thoughts on Autism Awareness Month

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Autism awareness month can be challenging for many of us who are on the spectrum. A large amount of it centers on non-autistic people talking about what to do about us, and a large amount of the publicity is created and focused around Autism Speaks and their “light it up blue” initiative. And both the organization and the initiative itself can be seen as controversial for reasons that aren’t really as important as the effect.


For many of us, autism awareness month is a period of time where we hear people talk about an “epidemic” that needs solving. We hear people who know almost nothing about what it means to live as an autistic, talking about how important it is to raise “awareness.” But awareness doesn’t even begin to offer people clues about realistic things that can be done to improve the situation. And we all know that when the month ends, most of these individuals will spare hardly a thought about autism for another year.


On the other side, however, autism awareness month has resulted in millions of dollars being raised toward research into both therapeutic and biomedical approaches to autism that have changed the lives of thousands, if not millions, of individuals for the better. The “light it up blue” initiative both paints autism as “something that mainly affects boys,” leaving women struggling on the spectrum to feel left out and “not as important” and also reminds millions that autism is something affecting all of us, as monuments around the world turn blue for a day or an entire month.


Autism awareness month, like many things, is a mixed blessing. We don’t suffer from autism one month out of the year, and our struggles aren’t improved by the simple fact of people knowing about us or giving money to research. We’re real people, living in the real world, trying to get by day to day.


World autism day gives us the chance to have a voice. News organizations are willing to have us on to talk about it. Right now “autism awareness” largely means “awareness that it exists.” We have the chance to change that into “awareness of who we are” and I’m hoping this year and the coming years we’ll see more and more autistic voices welcomed to the conversation that we have each year about what autism is, and what can be done about making people’s lives better.


Thanks again for reading.

— Paul

Elmo, Abby, and Julia on Sesame Street

Sesame Street’s Character with Autism

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I wanted to share some quick thoughts on the latest news about Sesame Street adding a new character with Autism. Here’s some more background information.


First, I’m thrilled that the autism community will be represented on Sesame Street, a truly iconic television show. Simply put, Sesame Street introducing a character with autism is fantastic. One of the strongest forces for improving a group’s treatment is representation. When you don’t appear in media at all, it reinforces for you the idea that you’re not “normal” and that not being normal is bad. You’re never the main character of a story, and never the person who succeeds. Stories are about other, different people, not people like you. On top of that, it means other people don’t see you either. It allows stereotypes to spread more easily, as there’s no countering force.


One of the sad things about autism in recent times has been the fact that there are many characters that are “potentially autistic.” Often the traits that mirror autistic traits are shown as a form of comic relief – the audience is expected to laugh at them when they do something unexpected, rather than with them as an empathetic character. In other cases, autism is often portrayed, but portrayed as an extremely thin slice of the disorder.


Often, these characters are so severely affected that they can’t express any real independence, and they typically have savant traits that really just aren’t that common in the community. Another group regularly shown are the “good autistics.” The people with autism who are just a bit quirky, and interact with the world in a slightly weird way, but it doesn’t significantly affect their lives. And when problems do come up, they can solve them by trying harder. Seeing these people can really make you feel like you’re not “doing it right.” And that if you can’t beat your autism, or turn it into a strength, you’re failing.


What we really benefit from is showing autistic individuals as “just people.” Everyone has struggles in their lives. For me, autism is one of them. But people with autism are also just people. We want to play games. Some of us are extroverts, some introverts. Some of us are quiet, some of us love motion and noise.


Autism changes how we experience life, but it doesn’t change that we’re people too, and judging by what I know about the character in Sesame Street, it sounds like she’ll be showing off some of that.


Representation is great, when it portrays us as part of “all of us” and not as some unique, stand-out to be observed. Just recently, we also saw Blizzard confirm that one of their characters in Overwatch is definitely on the spectrum, and I’m really hoping that as we move into the year, this may be the start of the “mainstreaming” not just of particular autistic individuals, but the disorder as a whole.


It’s really about time people start understanding a bit more about what it means to be autistic.


I hope you enjoyed the post!


— Paul

Motivation written in journal

Motivation and Self-Discipline

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I hope you’re all doing well! We’re currently in the midst of the first week of my book being available, and I could not be more thrilled about the support that I’m getting from so many great people. It’s been such a long road to getting this book published — I guess you could say it’s been a lifetime! But I’m so happy that people are enjoying it.


With that in mind, I wanted to write a post this week about a topic that I cover in my book, and a topic that I regularly receive a large number of questions about. That topic is: motivation and self-discipline. Motivation, self-control and self-discipline can be extremely difficult for those of us on the spectrum. Even some things I really enjoy and like to do, I still have difficulty doing on a regular basis.


The lack of positive, emotional memories limits my motivation and accomplishing anything in life ultimately requires successful interaction with others. The stress of foreseeing those interactions, which don’t always go right for me, also limits my motivation.


A big part of motivation for me in almost everything I do is having time to build up to an event, like a mental long jump. You can’t do the long jump with a standing start; you need a run up to it. I need to get a mental run up to almost everything.


The executive function of the brain, which handles time management, motivation and processing the general events of a day, is also affected. When this is functioning poorly, a person may have severe difficulty with motivation even with things they enjoy. They may have difficulty staying aware of what time it is and how long they have to accomplish certain tasks. Routine tasks such as grooming, house cleaning and mowing the lawn may lose their importance in daily living.


Overall, motivation and self-discipline will likely always be tough for me. As I mentioned, I will always need that “build up” time, and I encourage everyone who communicates with people with autism to try to keep the “build up” time in mind. It really helps to limit the stress and that is a hugely important thing for many people on the spectrum — myself included!


I hope you enjoyed this post. And if you want more info on the book, you can check it out here.

Man holding his head

Autism and Anxiety

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Anxiety hovers over a person on the spectrum like a gray cloud. The world is very stressful, because uncertainty looms everywhere.


A lot of people with autism don’t really have any awareness of how stressed they are, how to recover, or how long it’s going to take to recover.


Anxiety is a real and serious problem for many people on the autism spectrum. I’ve heard this from parents, teachers and doctors, and I’ve also heard this from people with autism. Often, anxiety can lead to panic disorder and phobias.


Children with autism express anxiety or nervousness in many of the same ways as neurotypical children. This could mean separation anxiety, anxious worrying or social anxiety. These issues commonly affect both children with and without autism. However, social anxiety is especially common among kids with autism.


That said, one of the most important parts of an autistic’s life is figuring out what parts of their schedule are most stressful for them.


For example, many people on the spectrum become stressed in social situations and don’t know how to pinpoint the source. When you don’t recognize what’s causing the stress, you don’t have the tools to ask for help in finding a way to make the situation easier.


Helping an autistic discover the source of their stress and an awareness of how stressed they are, how to recover, or how long it’s going to take to recover, is among the most important steps toward a more productive life.


If you have any tips or suggestions on how you think people can better understand the stress felt by those on the spectrum, I’d love to get your feedback!


Thanks for reading.


— Paul

Sign Arrows: with Help, Guidance, Support, Tips, Assistance

Is Autism Advice Misleading?

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Often I’m asked if I think that my advice on autism is misleading to some people, since not every person is the same and everyone has different experiences that make them who they are. And my answer is simple: Yes. To many on the spectrum, my advice will not be helpful. But to a lot of others, it may be very helpful.


My greatest fear is the day someone else on the spectrum approaches me and says, “This isn’t my experience at all! You’re misleading and confusing people, and making it harder for me to get the help I need!”


Unfortunately, I know this will happen eventually, because people with autism are exactly that: people. Every life is a unique experience, and what I’m trying to share with you is mine.


The diagnosis for autism is much more limited than the external symptoms you see. Autism creates many different symptoms that are coping mechanisms and can vary a great deal from person to person.


Working to understand some of the common challenges and experiences faced by most people with autism can make all the difference in your ability to understand them, and afford them the opportunity to function better in the world at large. And that is the primary goal of my life.


I truly hope that everyone takes my advice with a grain of salt and that they do some of their own digging for what advice is helpful, and what advice is not. I want to share my experiences and help whoever I can. But I know, for a fact, that everyone is different, because we are living our own lives.


Thanks for reading and I hope you continue to enjoy my blog posts!


Autism and Emotions

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I often get asked about people with autism and why we show emotion in a different way than people without autism.


People with autism do have emotions just like everyone else, but we aren’t affected by those emotions the same way, we don’t express them the same, and we don’t remember or recall them very well.


We can be considered cold or dispassionate, even robot-like, without visible emotion. This is a big misconception. We do have strong emotions going on inside, but we don’t know how to recognize them in ourselves or how to express or explain them to others.


Typical people express their emotions through subtle cues, like body language and tone of voice. Those of us on the autism spectrum don’t pick up on those cues very well.


When someone is sending emotional data to those of us on the spectrum, and from their perspective it seems as if we’re ignoring the data, it tells them the situation is not important to us. The truth is, we don’t even know we are sending that message.


Emotional understanding and expression is a very cultural thing. Japan for example, places the emphasis on NOT expressing emotions. Regardless of where someone lives, if they are on the spectrum, they will undoubtedly have the same struggle within their culture.


So just because someone on the spectrum may not seem to care, it is very likely that they do care, and either they do not know how to express that care, or they think they are expressing care, when indeed they are not expressing their emotions the way that is understandable to most people.


Always try to remember, people with autism are still people. We just express ourselves in different ways.


Thanks for reading, and I hope you enjoyed this post! Please let me know if you ever have any questions.

Words Have Power

Person First Language

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This week, I want to talk about an issue people with disabilities face, in some cases, every single day. That issue is person first language.


Person first language is the idea of not identifying people as instances of a disease. You don’t want to say 30 autistic people, but instead, you want to be sure to say 30 people with autism. You always identify the person as a person, because, well, we ARE all people!


This is simply the idea of changing how we think about people, by first changing how we talk about them.


There’s definitely a lot of evidence that shows the way we phrase things and the way we discuss things affects how we internalize our thoughts about certain issues. If we always focus on the person first, and the condition second, this reduces the dehumanizing effect. And doing this makes communication with, and our overall thoughts about, that person immediate and much more personal.


This might seem obvious to many people with disabilities, or people who’ve spent a lot of time around people with disabilities. But, in fact, it’s quite common to hear “that autistic kid” or “that deaf guy.” But you wouldn’t describe someone without a disability without using people first language, because it just would not feel right. For example, if your friend John was a chef at a restaurant, you wouldn’t say “that chef John,” you would instead say “John, who is a chef.” It’s the person first. And that’s the way it should be.


I hope this helps clear up the topic of person first language. If you have any questions, feel free to make a comment below. I love getting your feedback and read every comment.




Autism written on a puzzle

How Common Is Autism?

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How Common?


Today, the rate of autism is roughly around one in 89, with it being much higher among males; almost one in 50. The numbers change pretty much yearly, and they’ve been rising frequently throughout the last decade.


Part of the cause for this increase in the number of people with autism is that each and every year, we become better at identifying autism. A huge reason for this is awareness campaigns. And we’re living in the information age. Everyone has access to so much more information than ever before and this has been great for those trying to better understand autism. We all have access to Google and to other search tools that can lead us to autism advocacy groups where we can find all sorts of great information.


The Information Age


We now have access via search engines to groups like Autism Speaks, the Autism Cares Foundation and Autism Empowerment. These organizations have started campaigns like “Light It Up Blue,” which spreads awareness and understanding of autism, celebrates and honors the unique talents and skills of people with autism, and brings attention to the needs of all people with autism. These campaigns are a benefit to both people with and without autism.


Along with everyone having more information at their disposal, a large part of why the diagnosis rate may be so high right now is that we’re trying so hard to diagnose people early.


Of course, we know that autism likely has multiple causes. Some of them may be genetic. Some of them may be environmental. And there are surely causes that we do not even know of today. At the very least, the increased rate of diagnosis is at least due, in part, to our ability to identify autism so much better now than we could even ten years ago.


Overall it’s clear that people are, without a doubt, trying to understand autism. Along with that, it’s more common for people to try to understand what it’s like to have autism, and how they can better communicate with people they know who are on the spectrum.


If you have any other questions, feel free to leave a comment below.


As always, thanks for reading!