I'm going to try and keep this short, and I want to give all the information in hopes that anyone has experience with our situation because we are lost.
We have twin 7 year old boys (as average as average can be) and our oldest (who the post is about). Born without an auditory nerve, single sided deafness and wears cross aids. First diagnosed first with ADHD and ODD, realizing around 4-5 years old that it was autism. We like to keep the label "Asperger's" because it helps people understand better. Not sure if it's the Autism or he has been passed down my Narcolepsy, but he won't sleep without meds. With zero entertainment, he will stay awake for 24 hours straight. If he manages to sneak an electronic he can stay awake for days at a time.
Every doctor, every therapist, every teacher that has "seen this before and can handle it" all learns quickly that they are wrong. We have yet to meet a single person with any idea of what to do. People who have no experience with Autism say it's a parenting issue (luckily my parents after one night at their house now understand and are very supportive), close friends needed the full 3 hour Q&A session and end with "I'm sorry that sounds really hard", and professionals point to the same rotation of services and resources that repeat the cycle.
We knew very early on he was different and VERY smart, but we thought he was just quirky and weird. He learned to read at 3 when he asked my wife what "linwood" means when reading the street sign on their way home. He demanded to bring the first Harry Potter book as his independent reading book in first grade because he was already a few chapters in. We had his IQ tested at 129 but we are sure that it's higher because he had clocked out by the end of the testing. Reading is much more advanced than his other subjects, he just tested a month ago at an 8th grade reading level, but they are still grade levels above his peers. I don't say this as a brag (All smarts come from my wife), I say it to paint a full picture.
He is the most interesting kid you'll ever meet. He gets along better with teenagers than he does his own peers. Kids his age can't keep up, and even though older people adore him, obviously a teenager isn't going to be his best friend.
He flips on a dime and there is very little to no warning signs. Sometimes he rocks, sometimes he makes noises and fidgets, but sometimes it's all internal and there zero signs that he has lost it. The only chance we ever have to de-escalate once the signs show but id say 70% of the time we had no chance.
Before continuing, because I'm sure the thought will come across your mind: He is very empathetic and his pet dog and cat are his entire world. There is no amount of anger that would ever make him hurt an animal. When he is calm, he is very sweet, loving, and caring about those around him.
Even though he had been SUSPENDED 4 times in 1 year, spent 45% of his school day in the principals office, emergency removals 3-5 times a week, with an autism diagnosis as well as a hearing disability, he was not given an IEP until October of his 2nd grade year. (I have an NDA from a settled lawsuit so I will not be providing any further details pre January of this year) He has been moved to a more suitable public school (private schools are not in the budget) Where there has been mild improvement but still daily calls and the emergency removals have turned into "can you come pick him up, he is refusing to do anything and is running and hiding from staff" The new school is great, they are doing everything they can. I know it's a battle for any IEP, but trust me when I say that every single person/educator/education lawyer who has heard our story has their jaws on the floor with our story. School is hard, elopement, physical aggression toward staff and peers, trashing classrooms, ripping up work in front of teachers, loud noises with no end. He is offered breaks along with non preferred tasks, given a week to complete a smaller workload (even though we know he could do the work with his eyes closed) and just overall misery for us as parents, the staff, and other students. Nothing works.
Home life is rough. Positive reinforcements might work for a day/hour/minute but they don't last. The only thing that works is offering rewards (games, toys) for good behavior but we just cant afford to dish out an extra hundred dollars a month to bribe him with things that work for a very short time and the moment we don't have something worth his time, it's right back to his way or the highway. He loves creating games and playing with his brothers, but it's very much "You are here for my entertainment" very controlling and bossy. The moment they don't listen to his rules for his game, the ideas he comes up with, or they have any ideas themselves it could quickly end in an injury or a path of destruction. It's very much "if I can't be happy, no one will". We cant lie to him to get him to behave, he sees through it. We can't reason with him once he gets elevated because his social/emotional seems to be about 3 maybe even 4 years behind. This kid has the willpower of a marathon runner. No matter what our resolve, he has more. Once a punishment is given, he will spend every single moment hyper focused on how to get around it, lie, sneak, manipulate his way out of the situation. Spoken with ZERO exaggeration, he has out lasted us in 8 hour stand offs over small things that escalate into huge events.
If I were to explain him in as few words as I can: He does not understand cause and effect, and the world only exists to keep him entertained.
We can tell him "if you hit your brother again, you'll lose TV for the night" and when he looks us dead in the eyes, gets his "I'm escalated smile" does it again, and we tell him he lost the TV, it's like we just out of the blue for no reason decided we want him to be miserable because we are awful people. For whatever reason, no matter how clear our boundaries, no matter how huge the punishments, no matter how small the original issue is, he'll do it. He follows rules when it's convent for him and to hell with the rest. He would rather lose everything he owns and sit in time out for 2 hours rather than pick up his bookbag that he threw on the floor the second he walks in the door. He loses backyard privileges because even though we have the SAME EXACT conversation EVERY DAY about not sneaking snacks and eating them in his room, he will do it EVERY SINGLE DAY and we just hate him because it feels like he had no idea this rule exists (He has a near photographic memory, his first memory was at 1 1/2 years old. He remembers everything and holds grudges)
For a while, we were able to use the police as a tool to explain that the way he acts is not acceptable but that quickly fell apart. He has no respect for authority. Principals, us as Parets, police, grand parents, other parents.
I can not stress enough that there is nothing on this earth that will stop him from doing what he wants, when he wants it (When he is escalated....which if 100% is when he loses control, then he is permanently at 80%) I have watched him step on a toy, then proceed to smash his brother's face on the coffee table full force (this level of aggression is VERY rare) but no one can figure out what his triggers are. They change day to day, and all it takes is the wind to blow the opposite direction and he's lost.
We are currently trying neuro feedback and stimulation focused physical therapy, no meds for the last 2 months.
We have had 2 different therapists focused on talking out his feelings which always results in refusal to go (Going back to the willpower to fight no matter what)
We have tried medication. His most recent medication was rispardol which seems to have little to no effect. Before that was guanficine and hydroxizine for "busts of violent episodes" which did work but our home life was much worse because he spent his entire day at school trying to hold it together and he went totally off the rails at home . Methylphenidate gave him a stutter and life controlling texture seeking OCD (thank GOD that went away shortly after we stopped the meds). After more research and talking to doctors we want to try a bi-polar med to help bring his highs down, and his low moments to not feel so hopeless but we like to try something new for 6 months with breaks between.
We have tried every support, every resource, every idea, every method of parenting. Older role models, buddy systems, fidgets, comfort items, stress relieving, giving him a safe space, more ways to get out his energy, punishments, rewards, avoid non-preferred activities. We are told that "we just need to find the right med for him" or "we need to try and find a therapist that is the right fit". "We need to find the right supports at school" "He'll grow out of it". Every resource we exhaust points the finger at the next and says that will help. Everything works for an hour/day/week but not longer than that. Once he decides he's done, it's over no matter how many times we force him to go to therapy, it's a fight. No matter how many times we remind him that he's making bad decisions before a punishment, it won't change his behavior.
After all this, he's still my favorite person to spend time with. I love playing games with him because it's always fun. I love teaching him things because he loves space, physics, science, math, and loves video games like me. We try desperately to understand him, and we know he tries to understand too. He's just as lost as we are because once he gets escalated, it's like he blacks out and forgets the rest of the world exists. I have seen him break down time and time again sobbing because he can't control himself during an episode.
I'm not here asking for advice, we get advice from every single person who has ever come into contact with us or our story. The one thing we don't have is someone with experience. Our son is, as far as I can tell, unique. One in a billion. Genius and caring, but destructive and heartless all at the same time. I'm begging for help because no one knows what to do. We are all at a loss our family is suffering. Every day is hard. I honestly don't know how we do it because my wife and I just look at eachother and smile, then cry. How we can be happy and completely miserable at the same time is beyond me. I feel so bad for our twins because they are just normal kids stuck in the middle of a war that they didnt ask for. We try all day, every single day to do better and the best we get is not worse. We don't expect better anymore because there just isn't any hope left to give. We are just trying to get through today knowing damn well that tomorrow is going to be miserable, but we just pretend like we don't already know that.
I would love to hear your story, what you remember as a child, what worked, what didn't work. No outside resources are going to help, we aren't looking to mask it with meds, we need to learn how this kids brain works and how we can work with it.
Thank you for your time.