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Case Studies

Tales Of Transformation

Stories of Struggle & Success From People Using The AE Method & Tools

What Will Happen To Our Daughter Once We Aren't Around Anymore?

"For 20 years, my husband and I have done everything we can to help our daughter grow in her life. She is now 26. We have spent thousands of dollars, read hundreds of books, seen multiple counselors, had endless meetings and tried countless things throughout her life to help her to have a prosperous life.

With her high school graduation, we lost many of our resources and she lost most of her contact with others. We have tried to encourage her to develop relationships with those in our church and through volunteer work, but her interest is inconsistent. We remodeled a part of our home into a studio apartment for her, hoping to help her develop independent living skills and she was making progress.

Two years ago, however, she had a life threatening illness and all the progress toward independence seemed to vanish when she was so ill. She had to be dependent on us in the year she was sick. (It turned out she had Crohn’s Disease.) She’s been well for about a year now, but seemed to be stuck. She wasn’t taking care of herself or her environment. Her hygiene was poor, she laid around all day watching TV, she put on a lot of weight, and her living conditions were a mess. Her dad and I were becoming frustrated and hopeless. Nothing seemed to work to help our situation.

Then AE came into our lives.

I saw an ad for Aspergers Experts on Facebook and thought ~ yeah right! (sarcasm) I clicked on it anyway even though I was skeptical. After all our “experts” this was probably just more of the same. I was wrong.

From the beginning of the videos, I could feel my excitement growing. Here are people who are telling me how Kaitlin thinks, how to communicate, how to see below the surface of the situation. I could see her in you. You break things down so it’s perfectly clear. Plus, your videos are fun to watch ~ you guys have a great sense of humor.

I started watching your videos like they were life support ~ which they are. I tried things you suggested and they worked! Understanding that her anger comes from her rules has been life changing. It’s opened up conversations as she tries to identify her rules. I’m learning so much about her now and she’s learning a lot about herself. We’re making progress. I have hope again.

The best part about it is that she is excited also. She identifies with you. She’s even spent some of her own money for a camera for her computer so she can skype with you at some point. She has questions she’d like to ask. She is currently babysitting a boy with Aspergers and she’s also learning how to better help him.

You came into our lives unexpectedly and have made such a difference in a short time. I am so grateful for this blessing.

Thank you Thank you Thank you!" - Cheryl Allen

We Tried Everything And Kept Getting Nowhere

I didn't know until she was in high school that she was selectively mute at school. The teachers were saying, "Your daughter's really quiet and not participating", no one was saying "Your daughter is not frickin' talking at all!" She carried a whiteboard around with her at school to communicate in middle school. No one shared that with me. I had no idea. Because when she came home, she talked. She was extremely articulate. So I didn't even see the version of her that was at school. I mean, it baffles me.

She always had tactile issues. Clothing had to be the right way, her socks had to be the right way, and I just went with it. We just bought her really soft clothes.

Things started to escalate with my other daughter at school, and so she was diagnosed with anxiety, depression and school refusal. What we now know is she was having sensory issues at school, not just her Crohn's disease, which was also an issue at that time.

The way she processes her work, she explains she has to read something in full. So when you get an assignment to read a story and then answer questions, she can't do that. A lot of us can read it and answer the questions as we go along. She has to read it and then look at the question, answer that question, and then she'll read it all again and answer the next question, so it takes her a much longer time to do the assignment. It would take her six times as long as it was supposed to. So the teachers would say she's lazy and she's not doing her work, but we didn't have all this information.

I Didn't Even Realize How Deep Into Defense Mode We Were As A Family

I didn't even realize Defense Mode existed until I read an article on AE about it. That was about four or five years ago,when we were trying to help Harley's oldest daughter Sophie who, at the time, was 27.

Then, when Harley's son Avery came to live with us, I could see that he was very shut down. My personal experience with Defense Mode is that I didn't even realize I was in it. I think that's probably the case with a lot of people. It's not until you start learning about it and are able to even have a fair bit of self reflection that you realize you're in it, and then you need to work on it yourself.

To help myself get out of Defense Mode, I've been focusing on engaging in Somatic Therapy. I started with doing some work with Holly Bridges on my vagus nerve and that really helped. But Holly felt that probably my past trauma was so severe that I needed help from a somatic therapist.

So then I contacted Eva Angvert-Harren, and I've been working with Eva for about 12 months now. I think that's really changed my life and allowed me to, well, get rid of my PTSD, basically, which sounds an extreme thing to say. But that is what she's done.

Now that I know what it feels like to be out of Defnese Mode, It's fantastic. But it's also been interesting, because now I have to work out who I am again, which sounds a bit severe when I say it like that. Before, I was living with all these restrictions to make sure my life didn't spiral out of control. Now I can take the restrictions away, and my life's not spiraling out of control.

So I have to ask myself, "What do I do with all that extra emotion that I now have, and all that extra calm, and all the extra time, and all the extra energy?"

Because what you don't realize is, when you're in Defense Mode, it takes so much emotional and physical energy. When you're out of Defense Mode, you realize how much more emotional energy and normal energy you have to do other things.

So then you go, "Right, what am I going to do with my day now, because I have so much more time and energy?"

So that's been a really interesting journey to be on to work out, OK, so who am I now? And what do I want to do with my life?

Danny Took A While To Come Out Of His Shell

For the last couple of years Danny was in high school, we hired a couple of young ladies who acted as mentors/friends/homework enforcers. We outsourced the nagging to them so that it didn't become a family stress point and so that they could work out the homework thing together. That seemed to help quite a lot.

We found this one woman from a friend who worked at the university, and then her sister was the other person because she couldn't do it more than one day a week. In our community, high school students are required to have volunteer hours in order to graduate. And I can think of a whole bunch of high school seniors who would have been very mature and very capable of sitting down with Danny, and being patient, and knowing that they're his friend, and helping him get the homework done.

The beauty of all that is it took the stress away from our relationship with Danny

My Child Was Being Defiant And I Was A Nervous Wreck

"I think the bigger issue was that it took me a while to understand that they didn't have the tools, the resources, or the understanding to truly help. They were working on an old and outdated behavioral model that really wasn't about my child's behavior. For them they thought it was about her behavior. But in the end, through Asperger Experts, I learned it wasn't the behavior that was the problem. It was what was triggering the behavior.

I feel like, if somebody would have knocked on my head, hit me in the head with a brick, and said, "Listen up, we are missing the point!", then that would have been great, so I am trying to do that now with the reader. I find other people with kids who are struggling and trying to get the help they need and they get frustrated, and say "My kid spends all their time playing video games.", or "My kid refuses to do X, Y, or Z", or "My kid has a meltdown over this.", or "I'm worried that my kid isn't socializing enough."

They're looking at the behavior. They don't realize it, but they're looking at the behavior, and then their anxiety starts to amp up. And now they are worried about their kid's behavior and then they start to panic, and they start making demands of their child that the child just is simply not capable of fulfilling, because of the underlying problem of the parent being in Defense Mode.

A great example of this, for instance, is that right now I'm trying to learn how to speak French, that way I can speak it with a few friends who are already fluent. They try to talk to me in French, and what happens? I immediately panic, and I can't remember even how to say, "Hello, how are you?" All of the sudden, it's gone. So that's an oversimplified version of what's going on with a kid who is shut down, or melting down, or refusing to do what they're being asked to do.

I've had to explain this to family members and friends who say, "Why don't you make her do it? Just take away the internet, or just take her devices away, or refuse to let her do X, Y, or Z?" They don't understand. That would work if she felt safe and secure and grounded, but she doesn't, and even then, I don't know if that's the best way to handle it. It's a great way to destroy relationships.

To put it in the most extreme example, I saw a news article recently that said the FDA has banned shock therapy in schools. Obviously, that's horrific but there were some parents that were angry because it worked and provided treatment. I'm thinking to myself, "Of course it would work!" If you have a kid who's freaked out and you say, "Do what I say or I'm going to give you a painful electric shock", then they're going to do what you say. It worked in the sense of it got you the result that you want, but you aren't looking at the bigger picture to see that it destroyed any sense of them having any trust in humanity ever again.

So when you're looking at a kid and you're saying, "Well, he's just refusing. He's being manipulative, or he's being whatever." remember: it's for a reason. They don't feel safe. They don't feel grounded. They don't feel secure.

They Locked My Son In A Broom Closet

It's against the law where I live to deny a child an IEP service or an accommodation. So, what happened was they brought him to an illegal timeout room. There are legal timeout rooms in New York and in many states across the country, but there are also illegal timeout rooms. The idea is that they're supposed to de-escalate and to calm down in a safe environment.

What they did to my son was they stuck him in a little, tiny instrument closet, literally the size of my child and he was in there for two hours. This is an illegal time out room. He was told he couldn't come out until he did the assignment, which means he had to write. Of course, my son could not write because he has dysgraphia, so they would not let him out of the room. This went on for two hours.

Now, I knew nothing of this. At the end of the day I got a phone call, and it was the principal saying, we're suspending your son. This is the first day of fourth grade in a brand new school district that was known for how wonderful the special education was. Wonderful, right? So, I get a call. I go into panic mode. I'm in Defense Mode at this point. Because what I hear is, "Your son is not compliant. He threw a pencil at the teacher". And I said, "Wait a minute. My son, that doesn't sound like him at all. My son has never thrown anything at anybody." And all of a sudden, I get a week-long suspension for my son, which throws my family into chaos.

Both my sons went into Defense Mode but I did not understand what was going on. Remember, I did not know anything about the timeout room. I just knew about the suspension. I realized I had to have some help to fight the suspension, so I started calling advocates, and I started asking questions the same way people do right now on Asperger Experts. They say, "This just happened to my son. What do I do?"

I learned that there was a system and a process that had to be followed that I did not understand. I had to meet with the principal. I had to have a hearing. I had to do all of these legal things.