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Originally Posted by coschristi
First of all: You seem to be a bright & articulate person & you deserve to be proud of yourself for this. And you are very, very, lucky.
As am I. Initially diagnosed as the "most profound case of adult ADD I have ever seen in a female" by a Neurophsychiatrist who is known throughout the country as being a top expert in his field; diagnosed ASD within that same year.
I'll admit to a little indulgement in "autistic-elietist" mentality here & there. I have been determined to have Savant Syndrome as well with two seperate capabilities of perfect pitch & atypical hyperlexia.
It took a Herculean effort on my part, to put myself through college (with a 9th grade education), graduate, become successful in my career with time-management & communication skills. I did it because I desired my independence so very much.. I remembered being called “retarded” & I used it, played it over & over inside my head because success is the best revenge. The more times I heard “retarded” in my head; the harder I worked.
I’ll bet you have a personal success story as well. But we are both walking a very fine line.
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Well my success story is more about just surviving. I've been through a lot of hell and back but I know I would not want to be "normal" because I know there is an angle to it all. I just haven't entirely found it and I know that surviving everything has made more resilient to things that would probably bother the normal-minded people.
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Originally Posted by coschristi
My 13 year old son is on the other side of this line.
I assume you can use a toilet by yourself? Me too. But not him. As I type this, I am sitting on the bed where he is sleeping in the dark. It's what I do every night because if not he will wake up in a panic & destroy everything within his grasp. Not because he's "bad" but because he's scared & he panics. In about an hour he will wake up & charge like a bull into the bathroom. He will throw or knock over anything that is not nailed down.He will be disoriented & violent. I don’t try to get sleep anymore between 10pm & 2am because I’m afraid he might head butt me unconscious before I’m even awake.
He is 6 foot tall & 200lbs. Hopefully he will lay down & ram his head into my body a few times. I don't mind that, really. I know he craves that deep pressure from the outside after spending the last 11 yrs with his brain swelling from the inside ... It's called Encephalopathy; it started within hours after being double-dosed with his vaccines at age 2. Within 1 week he had started full-regression with a loss of most developemental skills within 2 months.
He developed super-human strength; tipping hard wood furniture end over end & ripping metal gates bolted into walls out with his bare hands, leaving piles of plaster & drywall. All of this he was able to do by age 4. His pediatrician has predicted that he will be 6'7" by the time he is fully grown.
He was in diapers until age 8. Still requires help bathing & dressing. Is only able to tolerate a small number of foods. He self-harms. You could ask him how he feels about it all day long but he can't answer.
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Your son is definitely more of one of the severe cases as I said. However I was slow with that basic ability. When I was in elementary school I would pee on the seat and of course kids would laugh at me. I ended up having to go to the nurse to get new underwear on a regular basis. I was afraid to take a dump a lot for a long time while growing up. The pediatrician prescribed me Miralax and I would fight my mom on it because I did not like the taste even though it was not supposed to have a taste.
When I reached my teen years it got better but I still have times where I am afraid to go the bathroom due to panic attacks or heart palps. When I am not afraid at least at night I can't sleep until I urinate at least a few times. Taking a shower is even worse. I have got so many panic attacks in there so I try to take as little time in there as I can.
I can dress myself of course but even being years older than your son I still have trouble with button up shirts at times. I'm also a very picky eater and I have sensitivities to certain things due to my digestive condition. A lot of times I do not know how to describe how I feel either so my response is usually eh. Mine is for a different reason than your son's I'm sure but it's still hard to pinpoint my emotions at times and even when I can share how I feel I do not always know why or how to fix it. This makes getting doctors to figure out what the heck is wrong with me difficult. I know that something is off but I can't describe it in a way that makes sense to them. That happened to me recently too. I ended up having to take antibiotics because they thought I had yet another a UTI but then they found out I was negative.
Quote:
Originally Posted by coschristi
"His" Autism is something to be feared. Calling him Neurodivergent won't change the fact that he is a child with brain damage.
He's an eloper. Found once in a neighbors home at 5am playing with their dog. I had spent a year sleeping every night in a chair just feet from the foor to avoid this but he had gotten around me. He will wander without awareness of traffic, “Danger” signs, animals, water. God forbid he is spotted by a predatory person who realizes that without communication ability he will make the perfect victim; he can’t tell anybody who did what to him. He now wears a GPS tracker 24/7 for his safety.
He wants so badly to have friends & to be part of something. Instead; he calls himself “invisible Luke”.
I am no longer independent. I live at 200% below poverty level & am dependent on the good graces of his dad for a very small amount of monthly budget & his SSI to help provide for him. I have nothing saved for my senior years. I have no clue what will happen to us. I am beyond “fearing”; I am terrified.
I know you don’t want to be “cured” of Autism & you don’t have to worry about that. There will be no cure. What’s been done is done.
I wish I could find some benefit of my own that would help me help my son. Nobody cares that I can pick out the 1 person in a huge choir that is out of tune, or ad lib harmonize with a song I’ve heard just once. Nobody writes me a paycheck just because I can read over 1,300 words per minute with 98% comprehension (top 2% in the nation, no less) . What good is my being an Autistic Savant, really, to my son?
Can you believe ME that my son was NOT born Autistic? That I am hyper-aware of seeing/hearing/feeling that something hurt him? Changed him & damaged him?
And guess what? I know that vaccines don’t cause Autism. BUT, while some can be born with Autism, most are not.
But some people are born with genes containing atypical variants. These variant genes, can cause a person to be either highly resistant to, or susceptible to, our own antibody/immune response. If you are born with susceptibility variants, your own immune system might trigger a response capable of causing Encephalopathy. Which is known to cause Autism.
In other words; we gave ourselves Autism, with the immune response that occurred after being vaccinated. Unless, of course, maybe you were not vaccinated & just happened to be exposed to Measles, Mumps, Rubella, Diptheria, Pertussis & Tetanus ... all at once.
I just found out last month that I was born with three variant genes; one resistant gene & two susceptible genes & there may be more . Apparently, I passed along at least one of these to my son. The CDC & Pharma have known this for years & are in the process of developing bio-specific vaccines so we will have options to the “one-size-fits-all” vaccines available now. Until then I guess some of us have been (and will be, unless tested first) sacrificed in the name of the “greater good”, AKA herd immunity.
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You're right it won't change the damage in his brain. However when I say it's nothing to fear what I am saying is it will not always be like that. You could not predict that your son would end up this way and for all you know the lack of vaccine could have ended up in the same result or worse. Again there are certain vaccines that I stay away from however if the biggest risk was autism I will take it and the vaccines I stay away from are due to my thanatophobia.
Yeah I can't say that I have that problem. If anything I am too aware however I do get those moments where it might be a risk. Being as absent minded as I am, I check out a lot. I was really lucky but there was that one time I fell down the steps when my mind just blanked. I have also been often susceptible to being taken advantage of because I would not listen to myself. I had always had a hard time saying no.
I never wanted friends persay. I'm a loner and sometimes that is more difficult because I always yearn for being around kindred spirits. The worst part is being introverted my social battery gets very low and a lot of people do not understand me so it sets me up for being lonely.
I worry too because I have never been independent. I still live with my mom and she has ADD as well so that makes it difficult as well. I've been wanting to move away from this state because I am over it but I am always afraid to take that risk. I won't pretend it isn't constantly difficult. I was first diagnosed with depression at 14 so I have had it a long time and I did not even know I had a learning disability until a few years ago so I was struggling without even knowing why. However I could not imagine my brain being a different way. What kind of person would I be if I did not have that learning disability? They also always say that if it was easy it would not be worth it. I do wish that more things were easy but a lot of times the hardships make life an adventure. I also do actually have a very low self esteem and I get really hard on myself but it is not because of my learning disability itself it is because the world is unaccepting/misunderstanding people like us.
Oh I know what you mean nobody cares about our other wordly perceptions/gifts but at the very least it makes life interesting/colorful and when they see that you take pride in that eventually there is that person that does appreciate that about you. They are a rare breed just as you but that is why you have to be patient and find them. I even got the same thing about my interest in astrology but I did find a few groups to discuss it with. The hardest part about it for me is though I do not care what others think in a general sense I do wish I could use it to be financially successful but as I say I have to be patient.
Also even other worldly abilities/gifts have to be worked with. They are just like any other talent. You have to do something with them or they are proven to be useless.
You might not believe the positive side I am sharing with you but I am telling you this is coming from a person who is constantly told I am too negative. I can be pessimistic probably due to my rising in Cancer but my Aquarius side knows in my heart it is all going to be worth it someday. There is always a storm before the rainbow and any progress you make should be appreciated.
Perhaps so but that doesn't mean you caused the autism by taking a shot. The gene did and that means it could happen with anything. For instance some people say there might be an ingredient in a specific food that causes mental issues to surface. You can look at it as an environmental factor did it but it would not do it unless you had that gene so technically you always had it. I hope this last paragraph is making sense. It makes sense in my head but I cannot actually put it in a non abstract concept. I understand your concern though. You want to be as careful as possible but when it's a mental condition I feel like those tend to be more genetically related.
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