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Q&A

Autism Q&A

Autism Diagnoses: The Next 20 Years

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 autism and the future of diagnoses. Here it is…

 

QUESTION

 

If 1 in 68 children (1 in 50 males) are being diagnosed with autism what will the world’s population look like in 20 years? I am a 78-year-old and have has been in special education advocacy field for 35 years. I also adopted and raised my 17-year-old great grandson who has autism. What a learning curve it has been. Even though I thought I was well versed in disability understanding and advocacy, autism was a whole new set of rules and language. I daily watch the struggles my grandson undergoes to try and understand my world. What will life be like for all of us in 20 years?

 

ANSWER

 

For the most part, I believe the higher diagnosis rate is more anchored in our improving ability to recognize autism early, and in higher functioning forms. I wouldn’t be surprised if we found that better diagnosis and treatment meant that we have fewer people struggling, unemployed, or in jobs that make their mental health worse and their life experience worse.

 

In many cases I’ve observed older individuals, people from before we really started pushing to diagnose autism, that I’m fairly certain are exhibiting signs of being an individual with high functioning autism. There’s even one past supreme court justice, in reading both his opinions for the court and his personal thoughts on his life and experiences made me suspect he may be an undiagnosed individual with autism.

 

In some ways the high numbers are a crisis, but I feel it’s a crisis of “now we know how serious it is” rather than “it’s becoming worse and worse” and that it largely means that individuals who would slip through the cracks will now have the chance to address some of their challenges better, and live healthier, happier lives.

 

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

Autism Q&A

Autism & School: A Major Issue

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 autism and school and why some struggle so terribly with each and every day. Please let me know if you have any questions.

 

QUESTION

 

My question is regarding school and discipline with my 17-year-old grandson. He doesn’t do well in high school. He gets mostly failing grades in the classes that don’t interest him and he doesn’t seem to mind. He can make them up in an online credit recovery class, which he has been successful with. He usually misses or is late to about 5-8 classes a week due to various reasons such as having a headache or wanting to get a drink or being hungry or having problems with his phone or because he is afraid someone is going to beat him up, etc. Homeschool is not an option. He is motivated by the promise of money and video games, but this seems unhealthy and unsustainable, and he won’t get rewarded like that in real life. He has a life coach but it seems the autism piece is a big obstacle to moving forward. Any suggestions would be very appreciated!

 

ANSWER

 

One thing people often miss when trying to help an autistic person overcome motivational and discipline issues is the other side of the equation. Often for us class, attendance, being around other students, etc, present unique and overwhelming strains on us.

 

Meanwhile, things like our cellphone, personal time, video games, etc, are coping mechanisms for anxiety. So when you use them as a punishment it’s like being in a situation where someone says “It’s cold out here, but I’m not going in there because it’s even colder!” and you react by taking away their blanket, so then their thought is “well, this is bad, but that makes going in there even worse.”

 

While discipline is very important, the school, coach, therapist, and others should be looking not for ways to push harder from behind, but rather the smooth the ground in front. Spend more time trying to identify why he’s willing to face the penalties and sees them as “not as bad” as what’s in front of them. It could be issues like pacing, struggles with sensory issues, anxiety or depression that needs other treatments, or a variety of other things.

 

It sounds a lot like he’s still in the mode where his primary concern is his own mental safety. Until he feels on solid enough ground, it’s very hard for him to go into areas where he’s been hurt before, and take the risks necessary to attend education or develop toward an adult life.

 

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

Autism Q&A

A Defiant Attitude or Autism?

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 a question about a defiant attitude form a person with Autism. Here’s the question and answer:

 

QUESTION

 

How do you know when certain behavior is the autism or just being defiant? My 14 year old becomes aggressive and loses temper easily when things don’t go his way especially with his much younger siblings.

 

ANSWER

 

There’s no real “tell” that I’m aware of, unfortunately. We’re people, so asking that can be like looking at a purple wall and asking “how do I know which parts are red and which parts are blue?” For example, it’s possible that he becomes frustrated with the situation because of the autism, but the actions he chooses to demonstrate it are a result of personality that needs guidance.

 

Aggressiveness isn’t typically a core aspect of autism. On the other hand, the situation itself could be a clash of personalities, while the aggressive response is because autism has so far deprived him of life experiences and skills that help him resolve it in other ways. While aggressiveness is less likely in autism, it’s not impossible, especially if it’s developed over time in response to the world around him.

 

The best starting point is just to see if you can get him to open up about it. Try to make sure he doesn’t feel “interrogated” or necessarily “in the wrong.” Just that you’re interested in why he did what he did. See if he can, probably slowly and across multiple incidents, be coaxed into opening up about what leads to these situations.

 

Whether it’s autism or personality, you still want to understand the behavior and you want to change it. The major difference is really in how you go about trying for change, and that can only come from a deeper understanding of what’s actually happening inside his mind when things go wrong.

 

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

Autism Q&A

Louden on Autism Q & A: Speech Therapy?

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 autism and speech therapy. Here it is…

 

QUESTION

 

I have two sons, ages 11 and 9, who have autism. We are doing ABA and speech therapy. How did you come out of it? Any recommendations going forward?

 

ANSWER

 

I haven’t done ABA therapy. I’ve worked with someone who was a BCBA but when we worked together she was practicing a different therapy.

 

As always there are many approaches to autism, and each one tackles different aspects of it. ABA can be good for developing specific behaviors, but make sure you’re working with someone who recognizes that autism isn’t just behaviors and that sometimes behavioral change can lead to more stress, anxiety, and potential depression.

 

A good practitioner will keep you in the loop, and adjust things based on the current state of wellbeing of your children. Beyond that, remember to give them lots of opportunities to be themselves. Intense therapies can often wear away at your ability to feel confident in your own decision making, as many of your decision-making tools have now come from “outside” and replaced the ones you’d come up with yourself.

 

So, giving them chances to take the lead, and live life their way can help them maintain the confidence necessary to take skills and make them their own, rather than just repeating someone else’s teachings.

 

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

Autism Q&A

Louden on Autism Q & A: Improving Your Skills

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 fine motor skills and apps that can help people with autism at school and with their writing skills.

 

QUESTION

 

We have a 13-year-old son with autism. In addition to trying to get compliance for his IEP from his Magnet school (health sciences and engineering) and dealing with his daily behavioral slips and suspensions (we’re on thin ice) he struggles with writing. It’s not just the fine motor skills, but the transference of ideas into organized thought/essays/stories, poor spelling and grammar and not understanding space allocation on a page. He also lacks confidence, even though his verbal vocabulary is off the hook. Note-taking is a challenge and he gets dinged for it. Every app I’ve found out there is either concept only or too “babyish” as he puts it. Do you know of anything to help with the motor skills and composition both? He has a voice-to-text device, but that’s not ideal, and unfortunately, they don’t teach keyboarding anymore. Any guidance you could offer would be great. I think this would go far in his self-esteem and help his stress level and grades as well.

 

ANSWER

 

One idea that might be interesting is to look into learning programming. There are both typing programming languages and more “visual” ones that allow you to construct your programs out of “blocks” that perform functions.

 

The reason I suggest this is because programming can become very engaging for people on the spectrum, it’s fairly common for us to end up with an affinity for technology and related things.

 

But programming also depends on a certain type of “logic.” You are, in essence, “explaining” to the computer what to do. The skills developed from this of thinking things through, understanding the parts, and putting them in an order that makes sense, typically starts very simple and grows in complexity as you learn to program. The same internal mental processes can be transferred to the process of organizing thoughts and ideas into clearer essays and stories. It may be something to look into.

 

It’s not specifically a treatment for autism, but there are many skills out in the world that can help anyone and there’s no reason not to repurpose them.

 

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

Autism Q&A

Louden on Autism Q & A: The Safe Person

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 why a grandmother’s grandson was insulting her often, when he is very nice and polite to many other people.

 

QUESTION

 

My 22 year-old grandson, who is on the spectrum, has beaten many odds like graduating high school and working for two years. He was the employee of the month for May! He loves work, but when home he shuts himself into his room & plays games online with people. I’ve always been his advocate & cheering squad but he’s very rude, insulting & mean to just me! His psychiatrist says I’m his “safe” person! What does this mean?

 

ANSWER

 

That’s difficult. Typically when an autistic person is “rude” to someone it’s usually a case of them not intending to be rude, but being interpreted as rude despite that. That can happen fairly easily if it’s around someone they feel “safe” with because they finally get the chance to relax from the high effort of trying to maintain their “appearance” throughout the day.

 

If he plays a lot of online games, he may have recognized that gamers often insult and “trash talk” each other as a means of bonding (though it’s not always this, and can just as easily be intended as offensive). It may be that he’s trying to form connections with you in a way he’s recognized elsewhere and it may take some time and effort for him to learn that such things aren’t appropriate except in very specific circumstances, or possibly even that what he’s doing isn’t the same as what’s happening elsewhere. Subtleties and nuance can be very hard for someone on the spectrum to pick up, so the difference between “playful and good-natured” ribbing and actual insults can be lost.

 

Because of the other disorders, it could also extend beyond that. It’s important to remember that not everything is autism, and it may be that something about his living situation or place in life is causing him physical or mental discomfort, and this is a way he releases that pressure.

 

My strongest suggestion is to talk with his psychiatrist more about the behavior. As they’re the person with the most direct knowledge of what may be going on, they may be able to guide you toward more positive behavior.

 

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

Autism Q&A

Louden on Autism Q & A: Autism Advocacy

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 Temple Grandin and why so few people with autism are successfully advocating, like I am working to do.

 

QUESTION

 

Why are there so few people with autism who are advocating for others on the spectrum? You and just a few others are doing this. Why?

 

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 am only able to continue because of financial support from my parents because they feel the message is important. 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 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, 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 overcome that or doesn’t struggle with that delay.

 

Very few people who have disabilities go out and advocate for them. Most just seek 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 made advocacy more difficult. You always have to put your own personal mental health first, and 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.

 

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.

 

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

Autism Q&A

Louden on Autism Q & A: Feeling Different

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 how people with autism sometimes feel different and inadequate. Here are my thoughts.

 

QUESTION

 

My son has so many feelings of being different and inadequate, and I was wondering if you knew what I can say or do to help him?

 

ANSWER

 

It’s difficult. Most autistic individuals who are at least interacting with the world around them are likely to recognize at least some of their differences.

 

My biggest recommendation is to try to give him the opportunity to be “in the lead.” Often if you’re doing a lot of therapy or education or other things, you’re following other peoples’ instructions and rules. Between that and the struggles of autism, you rarely have a chance to feel “in control” or even “right” sometimes.

 

If he has an interest, let him teach you more about it. Or look for activities like games, video games, or even just sharing a favorite book, movie, or TV show, where he can have control of when and how you do things, and be the one to “teach” you about it. This can help build a degree of confidence that, over time, can start to show elsewhere as well. Confidence and control are very, very important.

 

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

Autism Q&A

Louden on Autism Q & A: Finding A Job

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 older people with autism and how diagnoses can be different for those people who aren’t children or in their youth. This is a very common topic, so I wanted to address it in this week’s post.

 

QUESTION

 

Every time we discuss with my son about getting a job he shuts down. His story is that he worked for IBM after college for two years. He was then let go because of sleep problem.  He has $60,000 in student loans and we need to find him work, any suggestions?

 

ANSWER

 

This is a difficult situation many on the spectrum find themselves in. Failures lead to a loss in confidence, but you also often learn not to trust your own feelings of confidence. You’ve been confident before, and failed, so you learn you can’t really judge whether you’re ready to try again or not.

 

On top of that, you often have people telling you “I believe you can do it,” but you’ve seen them be wrong about you before. It’s also difficult because as long as you’re feeling pressured to get a job, it adds to the anxiety and uncertainty, making being successful at the job more difficult.


The most important thing, really, is to work to reduce pressure. That means focusing on other things, helping him find a place in life where he feels competent at just having reliable days. Address the anxiety, depression, and other symptoms.


Also, it may be valuable to look into SSI disability income. For some it’s important as a long-term tool to help stabilize things, but it can also just be a stepping stone. With the income from SSI offsetting the time-pressure that can come from being unemployed, it can make searching for a job feel less panic and anxiety inducing, and more something about finding “the right job, where I can succeed” rather than “any job, so that I’m no longer unemployed” which often can lead to more failure, and further loss of confidence.

 

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

Autism Q&A

Louden on Autism Q & A: Bullying People With Autism

560 315 Paul Louden

Welcome to the Louden on Autism Q & A. This week, 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 bullying on the Internet in relation to Autism. Here are my thoughts.

 

QUESTION

 

I am on the Autism spectrum as well. People on the Internet like to say that people who do or say something stupid are . . . Autistic. Personally, I do feel insulted by that. How would you perceive these comments?

 

ANSWER

 

This is particularly frustrating because we’re often struggling against our challenges, trying to be better. Trying to make missteps less often. When it’s used as an insult, it suggests we aren’t good people, when the truth is, we usually are and our missteps hurt us when we recognize them just as they may hurt people we’ve inadvertently offended.

 

So using the term “autistic” as a general insult for anyone who lacks social graces or otherwise does things like that is just completely unacceptable in my book. I take offense to it and it really does bother me quite a bit.

There are a lot of words, historically, that have been used as insults for a while until people learned to adjust their behavior around them. Although it’s not nearly to the same severity for “autistic,” things like the n-word and “retarded” have gone through various periods with the former being reclaimed, and the latter more or less being retired.

 

My perspective is that we should be trying to lay claim to “autistic” and establishing it as an identity. A word that has a specific meaning *we* control, rather than letting people who might abuse it toss it around as an insult, and that ties into part of how I speak about it these days. But in the end, harsh words come from all types of people, with and without disabilities, so we have to focus on what we can control and move forward being the bigger person.

 

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

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