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Articles: Insight, Help & Advice For Every Day Life With Asperger's

There are a TON of different paths you could take when helping someone with Asperger’s. Where do you start? What will be most effective? What should you avoid?

If you are confused about how to actually get started, this article is for you.

Everything we do at Asperger Experts is based on personal, real-world experience living with Asperger’s every single day. Unlike the doctors, we don’t get to turn it off at the end of the day. So that means finding real solutions that work for our lives, as well as the lives of our customers and clients.

Over the years, we’ve developed the AE Process which guides people with Asperger’s and their families on how to improve life with Asperger’s.

It looks like this:

aeprocess

(If you’d like a breakdown of how the AE Process works, click here)

For most though, the AE Process can still seem overwhelming. Where do you start? What do you focus on?

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Environments cause tendencies. Write that down and stick it somewhere that you can see it often, because it is a golden rule of life that isn’t often talked about.

What I mean by tendencies is that certain environments have a better chance of causing certain things to happen. A school causes tendencies of learning. A prison, not so much.

Sure, you can work on changing yourself, getting out of Defense Mode, aligning your Influence Circles, Holding The Space, and everything else we teach, but if you aren’t in a proper environment, everything will be much harder, take much longer, and be a lot more frustrating.

So what is an environment exactly? In our world, it’s just a distinction that creates a frame around a set of relationships.

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Since 2012, we've been helping people with Asperger's & their families through our courses, communities and workshops. Through this work we often get asked MANY questions.

Here are the answers to more of your burning questions.

As always, we'll be answering this from our own personal experiences of living with Asperger's, helping thousands of families, and understanding the latest science.

Why do they shut down so much?

First let's define what "shut down" means in this case. In this case, we call shut down "Defense Mode", the state in which someone with Asperger's is withdrawn, avoidant and reclusive. They want to spend time in their room doing nothing but, as an example, playing video games all day, only coming out to go to the bathroom or eat.

So here's the short version of why they are doing that:  Everything seems like a threat to them. And until they learn how to feel safe & secure in their body and the world, nothing will change.

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I spent many years very ill, going from doctor to doctor and being the “perfect patient”.  I did everything they suggested and took EVERY medication that was prescribed up until my kidneys gave out as I was taking upwards of 20 medications a day.  I realized I was spending a fortune and repeating the same treatments over and over without relief.

It was at that point I chose to start taking responsibility for this body I am in and realized I needed to advocate for myself.  That no one could remember what it was that I needed from appointment to appointment. I came to understand that each specialist would do what they saw fit but that it was up to me to not only tune in to what was right for me, but to track what had been done and keep detailed notes of what I needed.  Upon this realization I started to pay attention to my behavior and mindset within these appointments. I observed that I felt much like a victim at my appointments and blindly trusted each physician to know what was right for me.  This was the point in the appointments that I would then shut down, having no confidence that I knew what was right for myself or how to ask for the things I came to know I needed.  

So I changed some things:

I started to just be with my body, listen to it and keep clear notes of what I needed.  I recognized that I did shut down during my doctors appointments and learned to ask for help.  I sat with someone that I really trusted and who was willing to take the time to help me and I explained what I had experienced and what I needed and then I would take them with me to doctors appointments. This is where I transitioned from being a victim to being in control of myself and my outcomes.  I am happy to say that I am now healthy and thriving.  This wouldn’t have happened had I not stopped and clearly looked at the situation directly in front of me and chosen to take control and ask for help.

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We're fortunate enough to make a living helping people with Asperger's and their families. We've been doing this since 2012, and have gotten a LOT of questions.

(Over 43,000 questions so far... but who's counting?)

So here are the answers to the most common questions we get. Figured I would save you some time googling and looking through our materials.

Without further ado, lets get started!

Where do I start? What do I focus on?

Not social skills. Seriously. Everyone (including a lot of therapists and doctors) thinks that Asperger's just means lack of social skills. You and I know better. For someone with Asperger's, learning social skills is a SIDE EFFECT of getting out of Defense Mode.

Once they are out, they will start to pick up social skills on their own.

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Asperger's is a neurological condition that causes one to become overwhelmed by sensation, be unable to connect socially with their peers, and withdraw into a world of their creation. Now if you look and ask a doctor, the term Asperger's has actually been phased out, it's now been replaced with Autism Spectrum Disorder. And you can look in the new DSM, the DSM V, to find that.

But it essentially means the same thing, it's just a different label for the same thing. Nothing has really changed at all. Autism Spectrum Disorder is just now diagnosed either as mild or severe (mild meaning Asperger's, or severe meaning full-blown autism). But it's just a different name for the same exact thing.

We still use the word Asperger's because it still holds a lot of meaning to people. They still identify with it and they still know what it means and they're familiar with it.

It's like Mac or PC, it's just a different operating system. The icons may be slightly moved, things may work slightly differently, there may be different workflow steps to get to the same thing or do the same thing, but it's all still there and it all still works. It's just for different types of people.

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So your child has just gotten their very own Autism Spectrum Disorder (ASD) diagnosis, or at very least, you strongly suspect that they’re on the spectrum somewhere. Congratulations! As a proud Aspie myself it is my honor and pleasure to welcome you and your family to our little community. I really think you’re going to love it here.

Many times when I’m speaking to parents who are just getting introduced to this new world I’m often asked the same question. Whether the child is 4 or 44, parents all want to know: “Should I talk to my son/daughter about their diagnosis? If so, how? When? What if they’re already pretty turned off to or angry about the “label”?

All great questions. I totally get why this might be weighing on your mind. On one hand, it is really nice to know what is actually going on, but on the other hand, there are completely valid worries about Asperger’s becoming a label and an identity. So let’s answer them one at a time.

Should I talk to my child about their diagnosis?

First, and foremost, I want to say that ultimately this is a decision that only YOU can make. At the end of the day, I’m just the invisible, mysterious guy writing to you through the magic of the internet. I’ve never met you or your child personally, and I don’t know your life story. Therefore I cannot tell you exactly what you should do in your specific situation. I can only offer guidelines that tend to apply 95% of the time.

Generally speaking, there are 3 signs to look for in determining whether or not to have “the talk”.

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Simply put, the AE Process is a way for people with Asperger’s and their families to have a better life. It was created by people with Asperger’s, and has now been tested with tens of thousands of people all around the world.

They say things like:

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There are 3 main parts to successfully implementing the AE Process. These are: Community & Capacity, Culture & Connection and Change.

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More AE Process Articles

Be. Allow. Accept. This is the essence of “Being With It”. This is one of the simple, most profound tools you will ever come across. (So much so that we hand out wristbands that say “Be with that” to anyone who attends our live events & workshops).

When we say “Be with it” we generally refer to one’s emotional state. So often people with Asperger’s (and their families!) get so overwhelmed, burnt-out and spent that they have very little emotional processing capabilities. Then they forget to process their emotions once things get a bit better, and get stuck in a freeze loop of more and more overwhelm.

Being with it is so simple it can trip people up. All you have to do is let everything be as it is. Don’t try to control, manipulate, change, or make different at all. Let your emotions be. If you get uncomfortable, be with that too.

Yes, it is uncomfortable. Yes, it does “suck” at times. But if you stay connected to those sensations, they start to change. They start to melt. And suddenly, what was once uncomfortable is now effortlessly easy.

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Holding space is one of the simplest and most effective things you can do to help someone with Asperger’s emotionally process the day. Simply put, holding space is acceptance without judgement. It often, but not always, involves sitting with someone, practicing Deep Listening, and being a mirror to help them become aware of themselves (their feelings, emotions, and physical sensations).

Holding space helps people with Asperger’s (or really anyone) process their emotions, feel safe, and be able to settle and center themselves.

Holding space DOES NOT involve fixing, judging, offering advice, manipulation or any act of change. It simply allows what is already there to have the space to be.

A lot of people have trouble when practicing holding space for someone else because they feel overwhelmed by the conversation, or the person stores all of anxiety and throw it all out there at once.  If this is the case in your household, remember once people feel that they are heard and what is going on with them matters, they become more comfortable and feel more safe.  If you are finding that you are having a tough time with this skill (it takes practice and time to master) you may want to practice the process we call being with it.

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Ah that is the age old question, isn’t it? Why won’t they just listen?

You daydream about a perfect world where the beds are always made, homework is swiftly done, teeth are frequently brushed, your viewpoints are clearly expressed and understood, and there’s not an argument to be had.

Sadly, that is not the world in which we live. It sucks, I know.

So what do you about it? Are you doomed to wallow in misery as these problems remained unsolved? Sure, if you want to. But there’s a better way! Believe it or not, it is possible to expertly navigate the relationships and social situations that surround you every day.

To work this magic you need to learn and master a very special skill-set. It’s a broad and varied one, but we’ll sum it up in one word: Communication.

Now most of us have a pretty good idea what communication is, but just to be sure we’re all on the same page  let’s define it. If you look at the etymology of the word “communication” it stems from the Latin word “communis” which literally means “to make common”. So for our purposes today, we’re going to define communication as any action that transmits information to another human being. Basically, just something that puts information out there into shared (common) pool of knowledge, meaning, and understanding. This “something” can be practically anything: the words you speak, your tone of voice, your facial expression and body language, your behavior, the clothes you’re wearing, the list goes on and on.

So by now I’m sure you’re dying to become a master communicator, and learn all about how to actually do this. All in good time, my young grasshopper. Before we can get into all that awesome stuff we must first learn the 3 essentials of communication.

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Defense Mode is one of the 4 core pillars of the AE Model. This is a state in which someone with Asperger’s is scared, frustrated, or angry, as well as shut down and & withdrawn. In Defense Mode, everything is harder because you are constantly trying to protect against an imminent, perceived, but extremely vague threat. The perceived threat creates the same anxiety as a true life threatening situation.  Fortunately, the vast majority are not actual threats, but merely signals that the brain perceives as threats.

In scientific terms, what is going on is a complex biological, neurological & psychological rat’s nest of “problems” that all compound on each other (but have roots in low vagal tone). Simply put, there is simply too much to process at once. Most of it is internal and unseen.

From an outside perspective Defense Mode can look like someone who is unmotivated, unwilling, uncooperative or “rude”. I’ve heard it called Oppositional Defiant Disorder, PTSD, lack of motivation, video game addiction and all sorts of other names.

With limited understanding, all of those are accurate to a point. They miss, however, the key understanding of Defense Mode: People with Asperger’s and Autism are in Defense Mode and shut down because they are scared, upset and/or angry, not because they are trying to spite you, or be rude, or defiant. And yes, it sucks as much as you might think. To complicate matters, it is scary to be angry with the people who support you when you are in are in Defense Mode. Add a fear of abandonment to the mix and it gets really complicated.

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More Defense Mode Articles

Even More: Articles On Picky Eating, Influence, Hygiene Issues, Video Game Addictions & More

When Asperger Experts started in 2012, we never in a million years imagined it would get to where it is now.

With literally hundreds of thousands of parents, teachers, caregivers, and people with Asperger’s following us on social media, reading our emails, and asking for advice, we feel deeply honored to be able to positively impact so many lives.

There’s 3 main reasons why people love our courses and communities:

Firstly, what we teach really works. Take a look at the reviews of Asperger Experts below and you’ll see for yourself . . . If you’re willing to trust the process, it really does work.

Secondly, everything we teach makes plain old common sense when you think about it logically.

Lastly, we have an amazing money back guarantee. If you aren’t THRILLED with the results you get from trying our course, please email us and we will give you a 100% refund anytime within a year of purchase. No questions asked.

Now, enough from us. Take a look below and hear what others have experienced from our work.

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A lot of times on our website and Facebook page we see people that say something to the equivalent of “This is great, but it doesn’t work for everyone! Each person is different. If you’ve met one person with Autism, you’ve met one person with Autism”.

And we agree to a point. But there is another side that most people miss.

Let’s rephrase “It doesn’t work for everyone” to “Not everyone is ready for it to work”

Why?

Because from the hundreds of thousands of interactions we’ve had with people, we’ve noticed some patterns that DO work for just about everyone (assuming they are ready).

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My name is Rob Raede and I'm Danny's Dad. As parents of kids with Asperger's, I don't need to tell you that raising a child with AS can be incredibly challenging and frustrating.  My wife and I are thankful every day that somehow along the way we did enough things right to get Danny to a point where he could find a path to become a thriving adult.

Asperger's as a term and diagnosis was fairly new when Danny was diagnosed at age 12.  Not very many people knew about it, and no one had heard of Defense Mode or Sensory Funnels.  Resources were limited, and we had to make a lot of it up as we went along.  We wish we had Asperger Experts around when we were raising Danny.

I thought perhaps it might be helpful to other fathers of AS kids to recount some of the things I did wrong, and did right, raising Danny.

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You read a book. Or listen to a doctor or therapist and think "That's a great idea!"... but when it is time to finally IMPLEMENT that advice, you easily forget to actually use your new found wisdom.

Sound familiar? It's something I've done time and time again. So as a reminder, here are the top 9 things to remember when raising someone with Asperger's. You might want to print this one out and hang it somewhere to remind you. If you'd like more reminders, inspiration, and hope, you can join our email list here.

#9 - It's Not Personal

This is an essential mindset to always have. Kids WANT to do their best (adults do too). Nobody wakes up in the morning and goes "I'd sure like to have a horrible day! How can I make that happen?"

So when someone attacks you (verbally or physically), or does something that seems to be in spite, always remember. They are hurting inside. They aren't doing it because they want to be mean to you, they are doing it because they are suffering.

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Note about the author: Ellen is the mom of two adult sons  (including Danny) who are two years apart. She was, and still is, the “mom on call” for  Danny, who was diagnosed with Asperger's at age 12, and his older brother, who was the one with the more “normal” culture. She is thankful that she has had a very patient, and much more playful husband, to share in her parenting responsibilities.

I really hated summertime! Unless I could get frequent breaks, I disliked being with my Asperger son, Danny, playing Pokemon with him all day, and listening to endless monologues about his obsessions.

While I did my best to pretend to enjoy every single moment of parenting, I can now admit that I did not enjoy summertime. Here are some things I would have done differently:

1)  Don't stress about the lack of peer-friends.  Up until about age eight, his peers didn't seem to mind Danny's quirks.  After that, the kids his age began to notice that Danny was different and didn't want to be with him. (I used to cry when he was excluded from birthday parties.) They didn't understand him when he spoke obsessively like a little engineer explaining in much too much detail about whatever topic interested him. They didn't like that Danny did not abide by the social norm of respecting their physical space, and they thought it was strange that he would freak-out when someone touched him playfully. So, instead of complaining about the lack of peer-friends, or forcing Danny to be in stressful situations trying to fit in, I would have removed that stress by finding people of different ages to be with him.

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When everything goes wrong, what do you do? We’ve all had moments where the metaphorical rug has been pulled from beneath our feet. Moments where it seems like all hope has been lost.

Most people don’t have a plan. So when everything goes wrong, they panic. And then they either do nothing, or pick some random, emotionally-driven action and hope it pays off. The problem is, those random actions rarely (if ever) pay off. Without some simple pre-planning, it is almost impossible to keep your composure and act appropriately when you need to course correct.

Here’s the easier way: Follow the process outlined in this article. And remember, when crisis strikes: You have a second. You really do. Take a moment and follow the process.

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Why do people with Asperger’s sometimes smell like the inside of an onion that has been rotting in a graveyard for a century? Or to put it another way, why do people with Asperger’s often struggle with hygiene issues?

It’s not that they aren’t motivated. It’s not that they don’t care. Often, it’s just that they are so deep into Defense Mode that they don’t have enough energy to care. Their energy is completely spent just getting through the day, and defending against the world in general.

Hygiene is on their priority list! It’s just #27, and they only have enough energy for #1-3, which would be basic life functions (eating, sleeping, etc), getting through the day (school or work), and keeping it all together. Often there simply isn’t enough energy left to do anything else.

But assuming you are already helping someone with Asperger’s get out of Defense Mode, what are some things you can do to help them specifically with their hygiene?

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When you look at the etymology of the word “Influence”, it means “any outpouring of energy that produces effect.” Without this idea, we wouldn’t be able to change or shape our internal world, the world of others, or our relationships.

In our work at Asperger Experts, questions regarding Influence are the most asked type of question. Things like “How do I get my child to do their homework?” or “How do I stop myself from having anxious thoughts?”

A parent will try to get their kid to do homework by yelling at them or threatening consequences (outpouring of energy), but instead of being motivated, the kid will sink deeper into Defense Mode and withdraw & shut down further (the resulting effect).

Whenever we look at this system, we use the framework of Influence Circles to understand, evaluate and troubleshoot the issue. When ALL of your influence circles are aligned, the energy that you put into the specific act of influence produces the desired action (We call this the “Big Result”).

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At school I ate a peanut butter & jelly sandwich for lunch almost every single day from 1st grade - 10th grade. When I say almost every single day, I mean that I can literally count on both hands the number of days I didn’t eat PB&J.

I was one of the pickiest eaters you can imagine. Everything had to be a certain way. EVERYTHING. I had to have a specific brand of bread. I had to have a certain type of jelly. And if you used the same knife to cut my sandwich that touched anything green, it was game over.

At school I ate a peanut butter & jelly sandwich for lunch almost every single day from 1st grade - 10th grade. When I say almost every single day, I mean that I can literally count on both hands the number of days I didn’t eat PB&J.

I was one of the pickiest eaters you can imagine. Everything had to be a certain way. EVERYTHING. I had to have a specific brand of bread. I had to have a certain type of jelly. And if you used the same knife to cut my sandwich that touched anything green, it was game over.

This extended well beyond PB&J. Up until the age of 12, the list of foods I ate were:

  • PB&J
  • Rice, beans & chicken (Mexican style only)
  • Grilled chicken
  • Mac & cheese (but only sometimes! Other times it was evil)
  • Pasta (But I didn’t try that until I was 6)
  • Chili (turkey, beans, tomato sauce, seasoning packet.. That’s it)
  • Milk & Cereal
  • Waffles & Pancakes
  • Bacon
  • Pizza (but I didn't try it until I was 12)

That’s about it.

Fast forward to today at the age of 26, this is what I made for dinner a week ago . . .

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I was often concerned about Danny’s eating habits. He wasn’t willing to try pizza or pasta until he was 9, and has never tried red meat, fish, or most vegetables. He would have a meltdown if we cooked anything involving fish or olives that he claimed “smelled up the house and caused him pain,” and would be agitated if any prepared meal had anything green on it. As for school lunches, he ate the same thing - a peanut butter and jelly sandwich and apple sauce - every single day for 7 years!

I attributed his picky eating habits to his Asperger’s, but really didn’t understand the problem, and I regret that I initially scolded him for reacting so adversely. Now I know that Danny was, and is, hypersensitive to smells, textures, and flavors, a trait which is not uncommon for those on the spectrum. Certain smells, textures, and flavors, or even the thought of this sensory overload, would cause him to retreat into Defense Mode.

Early on, I would insist that Danny eat what was served, but that didn’t work well at all as he just didn’t eat. I also tried bribing him to try new foods, but that didn’t work either. To keep peace in the family, and to keep him out of Defense Mode before I even knew what Defense Mode was, I became willing to cook separately for him. I tried to keep it simple and if, for example, I made chicken with an elaborate sauce for the family, I’d have some plain cutlets just for him. 

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If you’ve ever been on an airplane, you’ve heard the flight attendants say “Put on your own oxygen mask before assisting others”. You’ve probably also heard this phrase applied to life in general.

But what does that really mean? It means that without taking care of yourself and making sure that all of your bits are operational, it is very hard, if not impossible, to take care of others.

This isn’t a wrong act, or something to feel guilty about. It IS selfish, because you are focusing on yourself, but at the same time, it is selfless because through the act of self care, you can better take care of others. So, let’s call it “self-focused” rather than being selfish.

If you ignore the importance of taking care of yourself and solely focus on taking care of others, the day will come when your health will catch up with you… and then you won’t be able to take care of yourself OR others.

In other words:

Self care is as essential as food or water.

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Embarking on the Asperger’s journey alone sucks. A lot. Some (including us) would say that it is almost impossible to succeed (aka thrive in life) without having a solid support system.

When you look at the etymology of the word support, it comes from “sub”, meaning “Up from under” and “portare”, meaning “to carry”. So in essence, a true support system carries you. It is a community; a system that helps ensure that no one has to shoulder the entire burden. It's a village (whether real or metaphorical).

Without a support system you are left exhausted, sick and stressed nearly 24/7 as you try to handle things well beyond the scope of any one human. That’s probably why Autism moms have stress levels similar to combat veterans. It’s FRICKIN' HARD to do this alone.

People with Asperger’s & Autism aren’t exempt from this. Unless you have a supportive group of peers, family members, doctors, therapists and caring individuals, life is not fun at all, and you can usually forget about having a thriving life.

So how do you gain a support system?

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What do you do if someone with Asperger’s is addicted to video games?

First, we have to understand the cause of video game addictions. Some people would say that the screens and games are designed to pull them in and keep them addicted. Some would say that they just don’t want to be a part of the outside world. Some people have no idea.

The current widely accepted model of addiction comes from the idea that the thing that the person is addicted to (whether that be video games, cocaine, alcohol, phones, etc) is the thing that is causing the addiction.

In other words, drugs cause people to be addicted to drugs, video games cause people to be addicted to video games, etc.

And so under that assumption, treatment centers, types of therapy and all manner of programs have been created to train people not to need the “substance”.

Here’s an alternate view of “Video Game Addictions”:

Addiction is lack of connection. Put another way, the opposite of addiction is connection.  

Because people who are addicted to video games usually have a hard time connecting in the world, they turn to video games in an attempt to A) Numb the pain, and B) Connect with something that is dependable.

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