Communication

Autism Q&A

Louden on Autism Q & A: Life After High School

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Welcome to the Louden on Autism Q & A: Volume 6. Today, I’m back to answer a question submitted by a website visitors to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

 

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

 

This week, I received a question about children with autism who are nonverbal. This is a very common topic, so I wanted to address it in this week’s post.

 

QUESTION

 

My daughter has autism (high functioning) and has been excited about the debut of Julia on Sesame Street and other TV stars with autism. She is 20 years old, and she loves theatre and film. I want to find programs for her to join after high school. I would love to hear your advice and understand more about the challenges you have faced post high school/pre college years. She is incredibly confident on stage!

 

ANSWER

 

There are some programs that I’m aware of. I largely focus on trying to understand and communicate my experiences, so I’m not as knowledgeable as I’d like to be in terms of services available.

 

Particularly, as you’ve noticed, services for adults are fairly limited, though there’s a definite increase in interest. I do know of the Burkhart Center at Texas Tech in Lubbock that focuses on either developing job skills or a collegiate plan. They seem to have a fairly broad approach to things, but I believe have a considerable waiting list. There’s also the nonPareil Institute in Plano and Houston (you may have noticed my knowledge is fairly Texas based right now).

 

They’re also focused on developing employability, mainly with a focus on programming, computer art, and game design skills. They’ve expressed a desire to expand, and among those are film and other media. So, there are things like that out there. An online search might be a great place to start!

 

As for the challenges I personally faced, it was mostly in self-management. I failed to pay my bills in a timely manner, failed to attend classes, or turn in assignments. I had no problem keeping up, but while I wanted to get things done, I wasn’t able to self-manage myself and overcome anxiety and other barriers that prevented me from acting. One thing I strongly feel about autism is that while many people see a goal as “helping them have a typical life” the more important goal is “help them have a happy life.”

 

Sometimes this means foregoing a college degree and finding your niche elsewhere. Sometimes it means pushing through and figuring out how to make it work. If she’s confident on stage, it might be worth looking into alternative approaches to developing acting skills outside of college. Maybe a local theatre group or improv classes.

 

Thanks for reading. Check back soon for another Q&A.

Autism Q&A

Louden on Autism Q & A: Volume #5

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Welcome to the Louden on Autism Q & A: Volume 5. Over the course of the next few months, I’m going to be using questions submitted by my website visitors, readers, autism advocates, parents and others to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

 

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

 

This week, I received a question about children with autism who are nonverbal. This is a very common topic, so I wanted to address it in this week’s post.

 

QUESTION

 

My son is nonverbal and autistic, and I’ve tried so much to help him. There will be many days where he says absolutely nothing that’s very understandable. However, the other day he said a whole sentence. I was very surprised. Any suggestions on how to keep this progress going?

 

ANSWER

 

A full sentence is great! Often there are a lot of factors when someone is nonverbal, and what it means when they verbalize something. As humans, we attempt a lot of nonverbal communication before we ever become verbal, and nonverbal communication still makes up a large part of how we communicate.

 

With autism, we tend to experience a lot of failures communicating. We often “reach out” in one way or another and have it ignored or misunderstood. And a key part of improving communication is developing the two-way flow.

 

Communication is never one sided, and your reactions to it, and how you respond, can be just as important. That may mean sometimes communicating as much as you can in the way they do. So if they prefer sounds or gestures, then sometimes trying to use some of their own communication tactics back, as a way of establishing a “shared” communication.

 

While the eventual goal is to move them toward more typical verbal, it can help to move back to them, and then move forward as a guide, rather than standing at the endpoint and asking them to come to you. Look a lot at the situation where a whole sentence was used — had it been a good day? Did he feel particularly safe? Was there something unique that might have removed barriers on the situation? Understanding the why is hugely important.

 

Thanks for reading. Check back next week for another Q&A.

The Jenny McCarthy Show

My Thoughts on the Jenny McCarthy Show

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JENNY MCCARTHY & AUTISM

 

Last week was an important week for me. As you may have heard, I made my first appearance on the Jenny McCarthy Show on SiriusXM radio. To start, I believe it went well, and I enjoyed the conversation with Jenny about autism and my new book.

 

But I will say, when I received the invitation to be on the show, I definitely had to think twice about what it would mean to accept the invitation and to speak with Jenny about autism and her controversial opinions.

 

WHY I WENT ON THE SHOW

 

My instincts told me to avoid the show, and to tell the producers that I would not accept the invitation. But that seemed like the easy way out. I understood that a large portion of her audience would benefit from hearing about my experiences and my perspective on life in general.

 

I felt like it was important to go on the show, but to also make it very clear that Jenny and I have differing opinions on many issues within the autism community.

 

In case you’re wondering why this is so important — Jenny’s son, as she has openly talked about, is on the autism spectrum. She has been very vocal on the topic, and it’s safe to say that over the years I have disagreed with a few of her points with regard to vaccinations.

 

That said, whether you’re a fan of hers or not, Jenny has given a voice to the autism community. She is a celebrity and world-famous, so if she’s talking about autism — people are likely going to listen. Although this isn’t always 100% positive, in my opinion, she truly does care about the happiness of people with autism.

 

MY KEY TAKEAWAY

 

So, after speaking with her, it’s clear that her main point is that if parents have children on the spectrum who are in immense pain because of their autism, then she would love to find a cure for that pain — not for the autism. This was a key takeaway from the show.

 

Overall, one thing that is always important to me is the idea that we need to remember that even when we strongly disagree with someone, we need to see life from their perspective before jumping to any conclusions. Most of the time, they’re just doing what they think is best for the people they care about.

 

TAKING THE RISK

 

I took the risk. I went on the show. And I knew that if did not go well, then it would be pretty damaging to my reputation in the autism and disability community. But I felt that sharing my message with her audience was worth the risk.

 

I hope you agree.

 

I’ve posted the 25-minute clip on my YouTube channel, so feel free to check it out by clicking here.

 

We also talked a lot about my new book: AUTISM – Behind The Locked Door: Understanding my Life as an Autistic. You can always learn more about the book at the link below.

 

Behind The Locked Door on Amazon.

 

Thanks.

— Paul

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.

Man with hands over eyes

Social Situations & Stress

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Falling Behind

 

When those of us on the spectrum find ourselves in a social situation where it seems everything is going wrong, we feel like we’re falling behind.

 

Once that starts to happen, it becomes very hard to resolve things and every situation becomes more stressful, especially when there’s not enough time to recover between events. It gets incrementally worse until something goes horribly wrong.

 

Maybe we’re shouting at someone or locking ourselves in a room because we don’t feel like we’re able to come out for a while. I’ve been there.

 

Learning Limits

 

A big challenge is learning limits, and I’ve gotten a good feel for where my stress level is at any given time.

 

Now I can tell people when I’m getting too tired to spend any more time with them and that I need to go home; or tell them, “I’m sorry, but I really need to ask you guys to head on out.” I have an awareness of my stress that’s taken a long time for me to develop.

 

A lot of people on the spectrum don’t really have any awareness of how stressed they are, how to recover, or how long it’s going to take to recover, so that presents a challenge for higher-functioning individuals with autism. It’s learning to recognize that self-awareness of, “What stresses me, how stressed am I, and how do I recover from it.” It is an important step in figuring out how to comfortably live.

 

Improving Social Interaction

 

It’s important that everyone involved works hard to not interpret struggles in social situations as a lack of desire or avoidance of social interaction. Sometimes, it’s just hard and it becomes very difficult. Unpredictability is something that I believe a lot of people on the spectrum struggle with, and I think that if we can all work to recognize that sometimes people just need support, social situations can become a less intimidating thing.

 

Some tips that others have offered include getting to know people better before entering larger social situations, working toward a focus on areas of interest within social situations, and lastly, understanding that social situations will be perceived differently by all people on the spectrum — not one person is the same as the next.

 

Challenges will always be apparent in social settings, but it does not always mean we’re trying to avoid them.

 

Children holding hands

Autism, Friendship and Relationships

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Inside every autistic person there are the same general needs for connection and interaction that a typical person has. We’re all human and we want to have great relationships. I think that’s something that most people can agree on.

 

Wanting friends is something that comes naturally to everyone, including those of us on the spectrum. But in my personal experiences (of course people with autism all experience different things in life), friends are few and far between, and friendship can be very difficult.

 

I didn’t really understand friendship the way others did. I shared activities with people, but it often didn’t connect to me that it matters so much which people I was sharing those activities with. There has always been a missing element for me when it comes to friendship and friendly relationships.

 

Observing people around me, I know I am missing how to make friends. I would have liked someone to teach me when I was younger, but we can’t learn it from just anyone who knows how to make a friend. People with autism — myself specifically — need someone who has a special insight, with an in-depth view of where we are and can explain the importance of friendship in a way we can grasp it.

 

Autism is not a reason to avoid having relationships. But it needs to be worked on, and the biggest part of friendship is trust.

 

Thanks, as always, for reading.

— Paul

Southwest Boarding Terminal

Gray Area for People on the Spectrum

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One common issue for people with autism, is the lack of feel for non-literal conversation. Our view of self and the world tends to be very concrete, and we rarely see the abstract. You might say, “Just don’t think like that, life isn’t all or nothing.” And we would if we could.

 

In my mind, the lack of gray area when you’re on the spectrum means we can have difficulty dealing with or understanding that not everything is necessarily absolute.

 

For example, the way my mind works, an agreement between two people is an agreement, and it does not matter what your position is relative to each other. Once the agreement is made, you have to stick to it — no matter how small the agreement.

 

In college, it drove me nuts that an instructor could be five or ten minutes late, but if I arrived late I was penalized. I didn’t know how to deal with it, and I just needed the concreteness.

 

It’s always important to understand that some people might not view the world in the same way that you do. Specifically, when communicating with someone with autism, you might want to be careful about sarcasm or about doing things outside of the “rules” of the situation. Another experience that comes to mind happened to me when I was in the airport. I was in line for a Southwest Airlines flight. I had a boarding number, like B-10. So, I casually took my place in line at the B-10 section. Someone in front of me had the boarding number B-13. But since B-10 through B-15 were all lined up in the “same” section, he just stepped in front of me and said, “you don’t mind do you?”

 

Honestly, I did mind. Rules are rules. And to me, I follow the rules and expect everyone else to do the same. Otherwise, why do we have them in the first place? Overall, try to remember that people on the spectrum don’t purposely try to take things as literally as they do, it just happens sometimes.

 

I hope this post is useful! And thanks for following along.

Why am I dedicated to helping others understand Autism?

Why am I dedicated to helping others understand Autism?

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For the past couple of decades, Autism awareness has been a huge goal. It’s been successful in getting the message out there that Autism exists, and that it’s something that we do need help with. We need donations, foundations and medical research. With one in 50 young men, and one in 90 children being diagnosed with Autism in the youngest generation, it’s a problem that’s far bigger than we expected it to be.

 

You have adults now who are on the spectrum, who are trying to hold down jobs and trying to live their lives, and have spouses and children. You have people of all ages, 10s, 100s and 1,000s of them, who are or could be diagnosed with Autism. We’re at a point now where it can’t just be a question of therapy and processes to help. It has to be a question of how do we help those with Autism and those without Autism interact with each other.

 

We have to address the question of not just awareness of Autism, but understanding Autism. What does Autism mean? What does it mean for a person to have Autism? How will they see the world differently? How might they react differently? How can a person with Autism and neuro-typical people have constructive and positive interactions?

 

What I want to do, and what I am going to be doing for as long as I can, is helping to help everyone understand Autism.

 

Right now I’m just a person with a message, but the important thing isn’t me, it’s the concept that there is a diverse range of ways people can experience and interpret the world. I want to use my personal experiences with Autism to start a conversation in which people are actively understanding Autism. I want people in schools to be exposed to people who have Autism, who have different ways of experiencing the world. At some point, I won’t need to be spreading the message, because there won’t be a message to spread anymore, it will just be a part of our culture.

 

One day, I’d love to be on a show like Jon Stewart’s, because one of the biggest things about spreading something like this, any issue about trying to address understanding and acceptance, is that you have to step away from being the “other” and start being one of us normal.

 

Autism obviously isn’t normal in many ways, but people who are autistic are still people. We all still have stresses. We all still have goals, wants and desires in our lives. You even have a few people out there who had Autism, or have Autism rather, who talked about it after the fact.

 

Dan Aykroyd is one famous person who has recently said he has Autism. Part of it is getting those of us who have Autism to come out in front of normal people and be normal in front of normal people, and to talk with them. One of my big, long-term goals, is to sit across from Jon Stewart and talk to him about what it means to have Autism. I want to show his audience of so many thousands of viewers, that someone with Autism can be there and be a part of everyday life.

Was I Hesitant to Tell People I Had Autism?

Was I hesitant to tell people I had Autism?

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I didn’t really have that many people to tell, so it didn’t really become a major question until far enough along. One thing is, I am Autistic. I didn’t make a lot of friends. I didn’t have large social circles. So I really didn’t have to ask myself that question, “Should I tell this person?” for quite awhile. I didn’t tell a lot of people at first, but once I finally sat down and asked myself, “Well, should I tell people or should I not tell people?” I think I pretty much decided that I should.

 

With most of the people I’ve told, I typically try to not immediately tell them, but instead I try to get to know them a little bit first, so that they know me as Paul and then they know me as “Paul who happens to be Autistic,” rather than “that Autistic guy Paul.”

 

I don’t want, “Hi, I’m Autistic,” to be the first thing I tell someone, because then you get caught up in whatever preconceptions they have about it. Overall, there’s a savant issue. A lot of that comes from people who’ve seen Rainman. They remember how he acted in that movie and they have expectations, so I’m afraid if I tell someone right up front that they might think, “Well, if there’s a loud noise or a fire alarm goes off he’s going to start freaking out.” I don’t want people to have that expectation of me, so I’d like them to get to know me a little bit first.

 

In most cases, when I tell people I’m Autistic, they simply say, “Oh, okay.” There are a few people who will then go on to ask me about it or tell me that they don’t really believe it’s a real thing. Or some people might share their opinions about it one way or another and those can always be challenging but, typically, it’s just an, “Oh, okay.”

 

I’m hoping that when and/or if there is a misunderstanding, it provides them the thought to take a step back and say, “Maybe he didn’t mean what I thought he meant,” and that it gives them that little bit of extra thought. Perhaps something like, “maybe he’s not reacting in the way I would normally expect a person to react.” Then, that gives us an opportunity to work through misunderstandings more easily than we would otherwise.