Q&A

Autism Q&A

Louden on Autism Q & A: Life After High School

560 315 Paul Louden

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

560 315 Paul Louden

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.

Autism Q&A

Louden on Autism Q & A: Volume #4

560 315 Paul Louden

Welcome to the Louden on Autism Q & A: Volume 4. 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 struggles with autism and hygiene — specifically brushing your teeth.

 

QUESTION

 

How can I get my son to brush his teeth? He’s 21 and has suffered from depression. I’ve bought every type of dental accessory and paste, but he won’t use anything. He had 9 cavities and early gingivitis. He just does not care.

 

ANSWER

 

Honestly, this is a case-by-case basis for most people. For me personally, repetition of activities creates a lot of anxiety, so I found myself unable to consistently brush my teeth when I started living on my own. Because of this, I had severe decay and some significant problems. For me, it was the internalized anxiety of the nature of the activity. For many autistic people, the consistent routine is important, but because of my toothbrushing routine as a child, the lesson I’d learned had been “brush your teeth before bed,” and because I had severe sleep difficulties, it didn’t work well.

 

Once I became relaxed and tired enough to sleep, I had to embrace it fairly quickly. Getting up to brush my teeth before would’ve made it much harder for me to sleep. As well, I didn’t eat breakfast, though morning brushes were at least somewhat of an occurrence. If someone had just told me “brush your teeth at 8 pm every night” it would’ve helped.

 

While your son’s challenges with tooth brushing may be different, part of it is a simple fact that the anxiety spike is a “now” thing, while rotten teeth is a “future” thing. It can be really hard for those of us on the spectrum to be motivated by things we can’t necessarily make a firm emotional attachment to. Also, presenting the task as “extremely important” can then make the task feel more high-pressure, and increase the anxiety over doing it. Then, the sense of “I’ve already failed” kicks in if your teeth are already in rough shape.

 

My recommendation is to take your time, and try to work through what the obstacles are to getting it done — is it schedule, taste, the texture, the time needed, or something else? It’s so important to figure this out. We need to know the “why.”

 

Then, once they’ve been better identified, work on plans to overcome these obstacles. Try to identify places where he may get stuck — assumptions he’s made about how things “have to” be done. And at the same time, try to let him lead in making the plan as much as possible. If it’s his plan, it can help grow his confidence and sense of control along the way.

 

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

Autism Q&A

Louden on Autism Q & A: Volume #3

560 315 Paul Louden

Welcome to the Louden on Autism Q & A: Volume 3. 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 struggles with school and an issue with discipline.

 

QUESTION

 

My son is 47 years old and he has not been tested for autism, but he is the textbook case of Asperger’s. He is working & living independently but needs support with living skills; housekeeping, laundry, money matters & bills, and he has a relatively recent lack of personal hygiene. He agreed to find a diagnosis while looking into getting disability for his anxiety, which he takes medicine for, but since that was declined he is reticent about testing. What are your thoughts?

 

ANSWER

 

I’m strongly in favor of seeking disability in general. The possible foundation of reliable income and potential medical insurance can reduce the general anxiety someone struggling with mental health may feel, and that can help improve their ability to operate daily and alleviate some of the “worry” they may constantly feel.

 

It’s important to remember that the process of applying for disability is intentionally harsh – it has many checks to ensure it doesn’t go to people who don’t need it, and so it’s actually likely you’ll be rejected once or many times. It’s expected, and you’re expected to persist if you actually need it, which unfortunately can be very difficult for those of us on the spectrum. We often take “no” at face value, and assume that systems like these are impartial rather than oppositional.

 

Seeking the diagnosis is, to me, very important. It gave me tools to better understand my challenges as well as a secure point from which to ask for accommodations. Much of the world is willing to say “yes” when you say something like, “I’m autistic and would like to be part of the early boarding group for this flight so that I’m not too close to so many other people for my sensory issues,” and similar. It may also help with the application for disability.

 

It may also be worth looking for experts in the application in your area. The process has grown complex, and there are often agencies and individuals who specialize in helping you with it and understanding the challenges it poses.

 

I am absolutely in favor of seeking whatever help you can get, in whatever form. There’s a world of difference between treading water and having a life preserver. While neither puts you on shore, you’re much more likely to keep your head above water and have the energy to work on improving your situation if you have that life preserver.

 

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

Louden on Autism Q & A: Volume #2

560 315 Paul Louden

Welcome to the Louden on Autism Q & A: Volume 2. 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 struggles with school and an issue with discipline.

 

QUESTION

 

My son is 13 and very high functioning. We have struggled with school mostly, but have not had many problems at home. My question really involves discipline. When he is argumentative, he gets extremely disrespectful with school staff.  He thinks the teachers are attacking him. So when he tells me what he thinks they meant or even what he thinks they said, how do I give consequences for his reactions?  He truly believes he was defending himself and I feel bad punishing him. Any suggestions?

 

ANSWER

 

This is a difficult question to answer from the outside. Often a lot of negative feedback, such as removing privileges, can be less helpful in changing a behavior that is seen as “self defense.”

 

It simply feels like it’s unavoidable – you’re either punished by your parents, or you suffer in the other situation. Neither situation keeps the person from suffering. In fact, this can sometimes lead to someone being more defensive — it’s hard to trust and open up to someone who you truly believe is “not on your side.” And it can also be hard to view someone as on your side when you see them as punishing you for trying to keep yourself safe — either physically or mentally.

 

Instead of changing the behavior by punishment, my recommendation would be to try to understand more deeply where the disconnect is. Does he not do the work, or is it just a matter of “respect?” If it’s what the school staff considers respect, then you need to think about whether or not they are adequately adjusting their expectations for someone on the spectrum who may struggle with typical social expectations.

 

When you live with autism, the world can seem like a very dangerous place. You often feel like everyone is “ganging up” on you because they have expectations that you can’t understand. And much like in your case, people punish your son when he fails to meet those expectations.

 

If someone says, “I explained it” and you say, “but I didn’t understand” then you’re punished for not understanding, even though you have a disability. Might they be in the wrong for failure to explain more clearly? This is rarely the case.

 

Because of this, trust can be very difficult to come by, and easy to break. My recommendation, then, is to look for ways to talk with the educational staff about fostering and increasing trust, and try to minimize punishments unless it’s clear there’s a real, conscious choice to do wrong. Poor behavior with intent is very different from a failure to understand.

 

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

Autism Q&A June 9th, 2017

Louden on Autism Q & A: Volume #1

1024 768 Paul Louden

Welcome to the Louden on Autism Q & A series. 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. But either way, I hope you enjoy the Q & A.

 

This week, I received a question about advocacy — how I do it, why I do it, and why there aren’t more people with autism out there advocating?

 

QUESTION

 

Why have so few successful autistic people come forward besides Temple Grandin to do what you are doing?

 

ANSWER

 

It’s very difficult. At the base level, most people can’t afford to do it. I wouldn’t be able to make a living from it, and I am only able to continue because of financial support from my parents — they feel that the message is important, so I’m thankful. Temple Grandin was fortunate enough to be able to graduate college and have a career. After that, advocacy is a difficult process. In some ways, it’s confrontational – you’re challenging beliefs people had and trying to change them. I often meet people who argue with me that I don’t seem autistic. Many of us have spent our lives being worn down, and if we manage to get to a level where we can get by, we don’t want to go out and make it worse for ourselves by having to confront people.

 

Assuming you have the financial means and personality for advocacy, you also have to have the communication skills. Even neurotypical people rarely have the communication skills to explain complex topics about their own thought processes and experiences. That’s why organizations like Toastmasters exist, to help people learn the techniques and skills to communicate effectively. Many of us with autism wouldn’t really think about going into a situation like that, one that feels largely social, to try to develop those skills. It only occurred to me after years of advocacy as a means of improving my skills, and I haven’t done anything like it yet. While, speaking diagnostically, autism is specifically an impediment to social communication, this can result in communication delays in general or uncertainty in general communication, so you have to be one of the autistic individuals who either overcomes that or doesn’t struggle with that delay.

 

Very few people who have disabilities go out and advocate for those disabilities — it’s very difficult. Most people just want to find a way to live their lives, and advocacy can add a whole new set of challenges. Autism, unfortunately, presents some unique additional challenges that make advocacy more difficult. You always have to put your own personal mental health first. So for many people, advocacy simply isn’t the right choice, because adding the additional challenges on top of how difficult daily life can be may just be too much. I’ve had to take a step back from my activities in the past, the radio show, and other things because I just couldn’t manage it. Sometimes retreating for months at a time was the best thing for me.

 

It’s just hard. And it’s not right for everyone in the first place, so the right combination of events has to lead to it. There are a lot of people with autism out there advocating on their own, locally, in their own spaces, but on top of everything else you also have to land in a situation where there are people who can help you spread your message on a larger scale.

 

It takes a lot of luck, really. That’s the short of it. Some of us got lucky, many of us are still working just as hard, or harder, to help people understand, but haven’t had the same opportunities.

 

Until next week, thanks for reading.

Children taking a test

The Educational Experience – Q&A

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Q: What was college like for you?

 

I tried to go to college a couple times. Eventually, I stopped going to classes most of the time. The second college I went to had an office for students with disabilities. They treated me pretty poorly. I went in the first time and had an interview. Then, I went in the second time and got yelled at for how I treated the person.

 

I think they confused me with someone else, because the first time I was there with my mom. Neither she nor I thought that I’d done anything unusual. That gave me a sour taste from the start.

 

Q: What were some big issues you had with college and your experience?

 

The big problem was that the only concession that they could offer me because of my autism was longer time for tests. That is not the kind of help that I need in any sense.

 

Typically, I go very quickly on tests. An hour test might be completed in fifteen minutes. I rush through things and get it done. Often, what I needed was sort of more flexibility on when homework could be turned in. I needed knowledge of what the homework was, in advance, so that I could work on it early to get it done on time.

 

Overall, they didn’t really have any sort of understanding of autism. I was unable to handle college, in large part because of their lack of understanding. I think that for a lot of people on the spectrum, college is an option if they start off with the right experiences.

 

Q: What made school easiest for you? Do you remember an example?

 

The easiest and most enjoyable time I had learning was when I was in Indonesia and we had 1 math teacher for 4 grades.

 

The classes were all at the same time. The teacher would say, “You’re on chapter 7. You have to complete chapter 7-1 through 7-7 in the next 10 days. I’m going to give you a test at 10 days and by that point you have to have turned in all of these assignments.” It was very black and white.

 

I could turn the assignments in earlier if I wanted to, and take the test earlier, and go on to the next chapter. I could work at whatever pace I wanted. It was entirely self-taught. I would read the lessons; I would learn the things. If I had questions, I would go directly to the teacher.

 

If I didn’t have questions, I could just go onto the test. I was allowed to work absolutely at my own pace. It worked fantastic for me.

 

Thank you all for reading! If you have any additional questions, feel free to head on over to the “Ask Paul” section and shoot me a question.

Family holding hands

Parents: Understand Your Child With Autism

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Often, I’m asked if I have any advice for parents of children with autism. Although there is not a “one size fits all” answer to this question, I typically start with something very simple. Parents should work to spend as much time as they can listening to their children and learning about them.

 

One thing that often helps people on the autism spectrum, is being able to answer the question, “why?”

 

Any time you do something, be ready for someone with autism to say, “Why did you do that?” And if you want them to develop the same habits as you, or the same values as you, be ready to talk about why you do the things you do. Clear explanation is key!

 

For example, why do you clean when you do, why you do anything when you do it, why do you keep the schedule you do. But I urge parents to also pay attention to why their child does what they do. This comes with learning and listening, as mentioned above.

 

Watch what they do, when they do it, and watch what their interests are. And try, if you can, if they’re verbal, to engage in dialogue about why. And if they’re not verbal, try to think of as many reasons as possible as to why this might be. Think beyond just why you would do it, and think about reasons why someone with autism might behave the way they do an do things a certain way. Put yourself in their shoes and show some empathy, because the biggest tool you have for getting along is understanding, not just knowing.

 

A true, in-depth understanding of why a person on the spectrum and a person not on the spectrum each do different things is a major key in fostering quality relationships — specifically for parents who have difficulties understanding their children who have autism.

 

If you have any questions, please let me know in the comments section of the post.

 

I hope you all enjoy!

Q&A, Volume 2

Q&A, Vol 2

900 600 Paul Louden

Q: If I ask my child to help me with some chores, sometimes he says okay but doesn’t stop what he’s doing. How can I handle this, as it can be very frustrating?

 

Paul: Again, that’s one of those instances where I don’t know the exact situation. It sounds like if you said, “I want you to help me take out the trash,” you didn’t say you want it done right now. Maybe they’re thinking, “Okay, I’ll come to you and say in an hour when I am done with whatever I am doing, hey, let’s take out the trash now.” Part of it could very well be that there’s an actual literal misunderstanding of what’s going on. That’s a very real thing that can happen.

Another part of it is, again; he could just not be paying attention. That’s very possible. The problem with dealing with a child on the autism spectrum is that it’s sometimes hard to tell what is or isn’t’ autism. If you’ve got a 12 year old who’s like, “Okay, Mom, whatever.” You still get that from those on and off the Autism spectrum. It’s a tough mix to figure out what’s going on. That’s why you go back to that concept of “pay attention to the why’s of everything,” and help them understand why you do things and try to understand why they do things. Never be afraid to ask.

 

Q: What would be the best way? If I wanted you to take out the trash right now, do I have to explain why, or just I want you to take out the trash right now?

 

Paul: It depends on whether you want them to do it sullenly and irritated or happily. If you say, “I want you to take out the trash right now,” and it’s interrupting something they’re doing, neurotypical or autistic, they’re going to be annoyed with it being interrupted. I think if you say, “I want you to take out the trash right now because the garbage truck could be coming in five minutes,” then that may help alleviate some of it. This isn’t necessarily an autism thing at all. Them not doing it right away because of communication issues, that’s more likely with autism, but being frustrated about it, that’s going to be any kid.

 

Q: What I think I am picking up from a lot of these questions is that apparently children with autism have a tendency to appear to be a little bit more stubborn.

 

Paul: They often do. That’s one thing that you get. Kids on the autism spectrum, they often ask “why” a lot more. A lot of times, they may have a hard time understanding authority. And doing it just because someone says to do it is really an emotional thing. It’s a cultural thing — parents having a specific authority over the child, a teacher having a specific authority over the child — those are all sort of cultural institutions. Doing something because your parents do it, the autistic child may be just thinking, “Well, you’re standing there right now. You’re closer to the garbage can than me. Why don’t you just take it out? It would take you less time to take it out, rather than it would to come upstairs to ask me about it.” Overall, there can be challenges understanding that dynamic between parents, child and authority.

Q&A, Volume 1

Q&A, Vol 1

900 600 Paul Louden

Q: What causes stress for a person with Autism?

 

Paul: My immediate response was … everything. And it’s probably true in one way or another. The world is just very stressful to me because uncertainty is stressful.

 

Q: What helps you relieve the stress?

 

Paul: Doing things I can control. That’s one of the reasons I got into video games in the first place. They take place in a controlled environment, they have rules, and they’re structured in a way where you can’t really break the rules. The game enforces the rules. When you play Monopoly with someone, they can slip money from the bank when you’re not looking, but if you’re playing the Monopoly video game with someone, they can’t do that — the game does not allow that to happen.

Video games gave me a controlled and predictable environment, that’s also why I like passive entertainment like books, movies, and things like that because they may have unpredictability, but I know that a movie can’t do anything, it’s just there on the screen. It’s a chance for me to avoid that unpredictability.

I get an anxiety spike every single time I hear the text message sound on my phone, every single time, no matter what. Just because … and it’s frustrating. I actually just get just a little bit angry every time I hear it, because no matter what it’s sort of interrupting my peace. But I also can’t just turn it off for the day because I will be anxious if I don’t know that there’s text messages waiting for me. It’s just one of those things where unpredictability is bad, but you can’t get rid of it. So, in short, it’s extremely difficult to relax.

 

Q: Why would a text message stress you? Afraid it might be bad news or something?

 

Paul: Oh, no, it’s not the content of the message; it’s just the interruption. It’s just that it was not predicted, it just happened randomly.

 

Q: How do you feel when you’re standing in line at the grocery store and it says ten items or less and a person in front of you has twelve items?

 

Paul: Drives me absolutely crazy.

 

Q: Why?

 

Paul: It says ten items or less. For example, I fly Southwest a lot, and they just give you a number to line up. So I’ll be number A-18 and in front of me is supposed to be A-17, behind me is supposed A-19, and you hear someone say, “Well close enough,” or whatever. I’m like, I know that you’re going to get upset with me if I say, “Well, I’m supposed to be in front of you,” but at the same time it’s clear that it matters to you too, because if it didn’t matter to you, you’d just say, “Okay,” and move behind me.

It’s the same at the 12 items or less line in the grocery store. It’s clear they want to take advantage of it being the express lane, but they also want to get around that. If you said something to them, they’d likely say, “Well, why is this a big deal?” I would say, “Well, if it’s not a big deal to you, why don’t you go stand in the other line?” It’s clear that in some way there’s a little bit of hypocrisy there no matter what happens.

 

Q: Do you say anything?

 

Paul: Usually, no.

 

Q: Would you have when you were a child?

 

Paul: Almost certainly. Probably the main reason I don’t say anything today is I fear for my safety.

 

Q: But you’d like to say something?

 

Paul: Absolutely.