While in Texas for the World Autism Organization International Congress, Jake's brain was working overdrive. He wanted (needed) to write to manage his thoughts, so we banged out a bunch of blogs on a variety of topics. We wrote as we scrolled through his 500+ notes in his phone. Two of the scariest things have combined to terrify Jakey, brain changes and loss of control. Jenn
"Oftentimes, now during puberty, I struggle with intrusive thoughts. It can happen numerous times every day. When I am calm, when I am playing on my computer, when I am eating dinner or any time.
The thoughts that pop into my head are about all kinds of things: getting in trouble, girls, Impractical Jokers TV shows, YouTube videos that I’m not supposed to watch, threatening thoughts, police & crimes, being silly in public and what would happen next.
I have a hard time telling the difference between what is real and what is not real. So if a thought comes into my head, I could do it…. And that could be scary.
I worry very much about being overwhelmed and losing control in public. Sometimes I think about crashing into or hurting people, sometimes it is fear of the police or what others might think that cause me to act wildly or dangerously.
Lately, the way I have been dealing with stress and these thoughts is by writing them down. I have more than 500 stress notes in my phone.
Writing them down and sharing them, helps me help others. When I share them other people may feel better because they will learn about autism. " Jake
In the throws of teenage torture, many of Jake's writings and texts are stress-filled, anxiety-riddled brain dumps. I've been waiting to publish another one until I came across something hopeful and positive. Here we have it, sort of. Instead of just listing symptoms of his autism and anxiety disorder, he's turned his focus to designing a hospital that specializes in Autism that could help him and his friends. [Background info: I think he has heard me discussing with colleagues the need for Mental Health Treatment Hospitals, for crisis care, that also have special strategies to address and communicate with our Super Heroes. Many times mental health issues are co-morbid with autism, but cognition and comprehension challenges prohibit some mental health treatment success.]
Here are his words, I just added punctuation.
Stop incarceration of special needs people.
Replace jails and psychiatric hospitals and group homes with Autism Crisis Hospitals and schools, with apartments inside the hospitals.
We need to redesign the logos of Montgomery county police cars, get new uniforms and add new cars called the Autism Crisis Services. All police and EMS will be even more specially trained.
For the Autism Crisis Hospital, I will contract with Kennedy Krieger, they are the best. It will be a hole new change for global disabilities or challenges. They will help us when our choices we do, when we are upset or overwhelmed or making poor choices.
Our hospitals will be completely positive and well-trained staff with no mean doctors. It will have very neutral, calm-colored paint, with cement walls and some with blue-pads available.
It will have a lot of sensory rooms, a light room for some kids, an OT gym and cafeteria. All this will help and support many of my friends. Once you are there, there would be no reason to go back to a regular hospital because they would have things figured out to help everyone.
The police would know what to do with our kids and individuals they would calm them down
and find them a quiet space. If they lose control the police can bring Autism Crises vans with pillows, soft walls in the back of the van, a weighted blanket and blue lights.
So here is how the system would work the families; First ask the upset person with autism to take break, if that doesn't work ask them leave the situation if they are still having trouble, then they could call the Autism Crisis van to come. Calmly walk to the van, that is just as big as a giant truck (think mobile home).
Inside the Autism Crisis van there will be 3 rooms like my school resource room. Pillows in the rooms and super duper quiet with blue lights and gentle music. It will have safe-room doors and will have something so if a child is upset they can either watch tv in the safe room or do a calming activity. Then the Autism Crisis team person can talk to the kid who is struggling or upset or perfectly fine yet still sad.
If the person is still upset you can decide to take them to the Autism Crisis Hospital. When you enter, calm lights turn on that are white but very dim and they pull the van into a big garage that closes behind them so no one escapes. They can go slowly into the hospital and not elope.
Inside the hospital they give weighted blankets to every person... boys and girls have to be suppurated so no one gets more overwhelmed.
Fidget toys, Snacks and Blue flooresent lights too.
Then doctors check in, they are happy and talk soft and they help them get calm.
If a person gets upset again there would be no reason for my friends to go to the jail. Even if they are dangerous because they can't help it.
I have all these ideas because I have experience at regular hospitals. There would be no need to go to a hospital ever. If I’m in overwhelming settings and being dangerous (committing crimes, disorderly conduct and losing control) there would be no need for me to go directly to jail without calming down in the Autism Crisis Van or Autism Crisis Hospital first.
My mom and dad help and support me and my school and behavior resource friends
and doctor Mathew and the federal police and doctors and police friends are on top of my behaviors. We leave overwhelming settings, we take breaks, we talk aLOT.
These are things my family and team is on top of.
When I’m talking about the hospital, I’m taking about how it would help my friends too. When I’m a president, I’m talking like down down the road, this will help my friends and me. When I’m done being president and making a big change all of this, there is going to be help and support all the time.
Also I think what we are also going to do in my county, not just here but everywhere is make a big difference with police EMS hospitals, and no more jails for people with special needs.
No more untrained police, no more untrained doctors.
We need new and trained professionals for family members, students and foster family’s who understand this behaviors so there is no more stress.
We need to stop putting people with special needs in prisons.
Here I am transcribing 4 pages of stress texts about relationships, friendships and FEAR. We've talked a lot about EVERYTHING, and Jake fully admits that the driving force behind all of his behaviors is fear. Fear of the future, fear of growing up, fear of abandonment, fear of being forced to have friends and fear of losing control of himself. Below are snippets of his texts, that he literally woke up to write, hours after he went to bed. The fears stir up so many emotions that will keep him awake.
Some of what you will read is as sad as it is insightful. We are social creatures. Jake wants this to be remembered by teachers, schools, parents and extra curricular coaches, who want to emphasize "learning to be friends." There's a time, and it's necessary, but when the time is right and the young individuals are available for growth. Right now, in puberty, we are not available for such challenges. We are literally treading water until the storm subsides. --Jenn
I cannot understand relationships. I just cannot learn it. It's too hard. I learned it in middle school but for me now, my behaviors are bigger and different. I just get wild and completely unsafe and want to hurt myself. My body gets loud and disruptive and uncalm and uncaring and completely out of control. If I'm forced to be a friend and I'm not ready it can be dangerous. My body is going through so much changes right now and adding confusing people and scary.
Relationships I'm just not ready for that at all and it is very arduous (his new favorite word) and when I have to learn hard things now I just want to die and/or be dangerous. Then if I get feedback from that it can get very dangerous.
Relationships are very hard for me and that triggers me to act in an unsafe manner and get dangerous because saying have "her" as a friend is super hard and for me my brain works very fast and respecting boundaries is hard.
I have so many intrusive thoughts but the scariest thoughts are about girls, being forced to be friends. I will have friends when I'm ready and it might be when I am older.
I hope this helps my friends around the world and helps parents and teachers understand kids in puberty and all the changes. -- Jake
Again... transcribing about 3 pages of text messages about girls and all the emotions that come with them! At this point in time, 16 years old, Jake is completely terrified of girls and how they make his body feel. He asks why girls make his stomach feel jittery... he can't control it. Everything comes back to control.
Also know, these texts about girls stem from heartbreaks he had in 3rd grade and 9th. This misinterpretation of signals and cues from girls, did a number on his heart. He is doing what we all do... protecting his heart. --Jenn
When I think about girls, I just lose control. Pretty painted nails and long hair make my stomach wiggle around and my heart go fast. When I get overwhelmed by these emotions I have to let it out. I scream-sing a song about the Cookie Monster and a couple girls who make me upset. Many think I'm being a class clown and being goofy person but my autism doesn't let me make sense of these feelings. I just cannot help it so I scream.
Sometimes I scream her name too. Everyone in my class knows her name. I'm not a bad person or a teenager "playing games". I'm scared of these emotions.
Girls started getting me upset in 2nd grade. Sometimes I think they should put girls in jail and keep them away from me. Maybe I need to go away alone because I'm handsome and scared. I'm going to be famous. Girls will like me ... and that is scary. I don't know what to do. Sometimes I stare.
Sometimes I yell the names of the people who have made me upset and the girls names too. I even do it during school. I am not trying to violate their privacy. If they or anyone sees me screaming the names and tell me to stoop, I will lose more control and sing more! I might become disorderly or dangerous and hope police will understand. Man police might understand this.
I need to leave and take breaks.
The emotions that come with girls are scary, confusing and make me out of control. I do hope to be married one day tho.
One thing I had not discovered until recently, is how much words matter and how long this guy hangs on to every word spoken. He’s literal, black or white, all or nothing and no in between. Everyday conversation can spike his anxiety through the roof and spark panic attacks, which trigger the downward spiral. "Remember when I was 4, little baby Jake, and you told me I could do things on my own... well now I'm 16... I'm doing this Jake's way, you told me I could."
He holds on to EVERY word, ever spoken... plan ahead before the words leave your mouth.
Here’s Jake’s literal and fearful view of growing up. Anxiety rules all. Autism is the least of his challenges. -Jenn
I’m nervous about when I turn 18 and accidentally lose control the consequences are bigger and more serious. I find it very ridiculous and very counterproductive because that is giving me stress. I do struggle and do make poor decisions and because of my Autism behaviors, don’t always realize it until its too late.
My behaviors have even gotten bigger and more serious and when my body is very high it’s very hard to follow laws or police commands and rules even at home. I do struggle with staying in control and being safe. I have a hard time controlling myself especially in overwhelming settings.
I want to help everyone understand that if kids with a disability might get in trouble with the law when they are 18 years old and lose control. The most important thing to do is talking it through and help them feel comfortable and calm. We need more intensive help and support. I struggle with behaviors because of my very fast brain and I’m getting older. Some people that don’t know me, already expect me to behave like an adult because I’m really big and strong.
I’m very scared of my future and people not understanding. We need to teach the whole world about Autism Super Powers. I would make a speech about autism, IMPORTANT JUST LIKE MARTIN LUTHER KING JR at Jeni’s & Mattie’s park. There would be food and police friends and fire rescue friends as well and other fun stuff. Then make a parade with all our families by marching in front of the Police headquarters.
We should rally around people and families who struggle. They should not be judged by what they look like or their size. People need to accept us as we are because we are gifted and amazing. We can be big and still like the Cookie Monster, Wiggles and Santa. We cannot be judged by our behavior because we are scared and make mistakes sometimes. Just be nice and calm to us.
Let’s make the change for the best of everyone with faith, confidence, bless, grace lord and hope. And for not just me, but for everybody all over the world.
Oftentimes, Jake's biggest challenges are fear based. Along with Autism he is also diagnosed with Generalized Anxiety Disorder - NOS... among many other things. He writes to calm himself and to let others know what's going on in his head. As you read these snippets, read between the lines and feel his fear. Fear of someone being upset with him. Fear of Jail. Fear of not being perfect. Fear of people not understanding him. Fear of not being in control or able to control others.
Jake sent me a series (20) text messages to write this story. When he's upset he purges into notes/texts on his phone. They are in no particular order, but fascinating nonetheless. I've edited so they make sense, have some appropriate grammar, while keeping his message.
I have a hard time understanding when people are emotional. Everyone is entitled to have emotions as well, but because of my autism, I get confused and scared. All those emotions come into my body at once.
When others are having an emotion I feel it deeply but don't understand, I automatically think I'm in trouble and I don't like when I see people having emotions with me... especially seeing the reactions because that will make me scared because I have a hard time understanding it.
And I don't like it when people have strong emotions because I feel them too. I like it when people are chill with me instead of full reactions... but that's hard because everyone is entitled to have emotions.
When I feel others' emotions it actually hurts my body. I feel jumpy all over the inside and like sharp tasers in my stomach. It starts in my neck, then shoulders then down my arms and stomach. If i'm really stressed my body wants to crash and bash down. If I am doing that, it is very hard to make me stop and can be dangerous.
Down the road in my head I'm afraid that autism may limit me and I will always be confused. I am working very hard at understanding everyone and the world around me. When I'm overwhelmed and people are pissed off with me, I don't like it because my autism super powers allows me to feel all those emotions.
Mom says we do not punish autism.