I recently read Van Der Kolk's "The Body Keeps The Score", a book about trauma and its effects. It's a masterwork, and I'll be thinking about it for the next year. But one of the big themes for me is the extent to which he, a well-placed psychiatrist with a strong mix of clinical and research work, had trouble getting the medical establishment to go beyond outdated categories and marginally effective treatments. It's heartbreaking to think of all the patients so poorly supported by the existing system.
It made me realize that as far as mental health goes, we're living in an age that people will later look at with horror. It makes me think of Semmelweis [1], who had the then-radical idea that surgeons should wash their hands before cutting people open. Many in the establishment mocked him. How dare he call them dirty! He ended up being committed to an asylum where he was beaten; he died 2 weeks later from a gangrenous wound. Eventually people realized he was right, but too late for him. And for who knows how many deaths.
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> My nephew hung himself at 14 years old after a doctor thought he had ADHD and gave him ritalin. It was a misdiagnosis.
I have ADHD and the first to get diagnosed in my family, and now that I'm dealing reasonably well with that, strongly suspect other ASD-related traits: obsessionality, sensory issues, social problems, but these lightly enough that I've been able to make it through life just being a bit "weird" and that's okay because I'm a successful software developer. (Crazy rich guys are just "eccentric", right?)
My father definitely does have many of these too, and if you look back at the family history it's everywhere... from cousins with autism who can't live independently, to back generations with erratic behaviour for which this sort of neural difference is the best explanation.
Now speaking to the quote... my 13 year old has terrible levels of anxiety and depression, and has an ADHD diagnosis. We very briefly tried a stimulant and just as quickly took him off it, whereas they have worked well for me (now, I was also suicidal as a teen.)
Why? He struggles with focus and concentration, which the stimulants should help with, as they do for me. My best guess is that he has a deeper problem in finding life meaningless, a lot of "no point to anything" and "I don't want to live anymore". When he took the stimulants, he was able to focus... but on those thoughts since he had little else he was thinking about and that made the depression and anxiety so much worse. So I can absolutely see how Ritalin could result in suicide. :(
The difference for me was that I knew what I loved, and I knew what I wanted to do with my life, yet I was constantly beset with intrusive thoughts that were telling me I should be doing something "better" with my time. And a fundamentalist religious upbringing had me thinking that was my conscience or God and therefore I should be paying attention to it. But then that almost shrank to nothing as soon as I started the amphetamines.
So I view this as a similar situation to giving antidepressants to sufferers of bipolar and mania; you end up exacerbating the problem.
They are finding there is so much genetic overlap for these disorders which is why you see so much similarity in your child, yet there will be differences that might be influenced by his mothers genetics.
My father was no doubt an Aspie, he was a poor Italian boy in NYC but somehow attained a full ride to NYU when he was 16. My mother, a poor Polish girl who ran away from the coal country to NYC where she met my father. She has the bipolar phenotype running through her side of family and she was in and out of hospitals and attempted suicide a few times as well.
So you end up with me, a mix of my mother mitochondrial DNA and my fathers Nuclear DNA. Bipolar, OCD, Aspergers...
Your experience with amphetamines is like mine with Benzodiazapines. When I took them for the first time I finally understood how other people were able to exist in the world. Klonipin stops my suicidal impulses in a half hour.
Regarding my nephew, I was frustrated with my brother, he did not listen to me. I was given Ritalin when I first saw a psychiatrist in 1996 and it threw me into an insane manic episode (I am still apologizing to my ex-girlfriend). That is how that "diagnosed" my bipolar disorder. So being he was realted, and showing some of the same behavior of my other brother who was also bipolar, I felt it was a wrong diagnosis.
I can tell you the most important thing you can do is get your child's full genome run if you can afford it. To me it is the only thing that will help you find what he needs. I have collected about 15 other people's genetics and I often compare them to mine. By a white European standard, I am a genetic "freak". But through intensive self study of nurtigenomics, I have found a lot about what works for me.
And I am sure you know this, but the less stress on your child the better, we need to live a life that looks nothing like the mainstream, and the more you can let him live how he needs to live the better. But I wish my parents could have helped me as much as you have already with your son. My mother told me that since I was pretty intelligent they felt I could be left to my own devices.
But I think mitochondrial genetics is huge in all of this. I have a family's genetics who have two sons with severe Autism and their mitochondrial genetics are different to say the least.
If you want to email about anything feel free: [email protected]
> My father was no doubt an Aspie, he was a poor Italian boy in NYC but somehow attained a full ride to NYU when he was 16. My mother, a poor Polish girl who ran away from the coal country to NYC where she met my father. She has the bipolar phenotype running through her side of family and she was in and out of hospitals and attempted suicide a few times as well.
Oh yes. I got into family history as a lockdown hobby, and it runs well back on my side of the family. And suspect my wife has some ND traits as well, but her environment led her to develop some exceptional coping skills.
The key difference between my son and I that I note is that I escape into books and learning (as did my father before me), whereas my son escapes into physical activity, much like his mother's side did... surfing, boxing, extreme mountain biking... it's the adrenaline that's his coping 'drug'. (Notably I did get into extreme amounts of exercise at one point to cope, but mine was much less adrenaline... it was long distance and multi-day activity.)
> When I took them for the first time I finally understood how other people were able to exist in the world.
That moment of clarity is incomparable... the only comparison I can make to it from before the stimulants was when I was able to induce "runner's high" in myself.
> Regarding my nephew, I was frustrated with my brother, he did not listen to me. I was given Ritalin when I first saw a psychiatrist in 1996 and it threw me into an insane manic episode (I am still apologizing to my ex-girlfriend). That is how that "diagnosed" my bipolar disorder. So being he was realted, and showing some of the same behavior of my other brother who was also bipolar, I felt it was a wrong diagnosis.
I got a bipolar diagnosis a decade ago. Whether technically a misdiagnosis or not I do not know, but I consider the bipolar symptoms to be resulting from the ADHD... I was forever "failing to live up to my potential" and then when I did achieve miracles seemingly out of nowhere I became manic with "I can do anything" euphoria... only for the cycle to repeat. I think partly I didn't have enough life experience to recognise the cycle, because I did fine up until the end of my undergrad due to the formal external structures that kept me on the right path.
By the time I actually got the formal ADHD diagnosis and the prescription, I had already reached a high degree of self-awareness, and knew exactly what it was I wanted to be able to focus on.
But that when contrasted with my son's experience (and the others in this thread) are crystallising the view I'm trying to express... someone may very well have ADHD and lack executive function, but if they are in a pit of anxiety, depression and despair, then they need to work out what they want out of life and what to focus on first before going anywhere near stimulants. Because if you're focusing on wanting to be dead... well, I'm sure you can see the implication I'm getting at.
The same is true for both my brother and myself... I have a number of quite close friends, yet my preferred interaction is one-on-one.
Couldn't agree more that it's strong social connections that bring purpose. He's struggling on that front being out of school, but school brings other troubles.
(The other aspect of purpose is a sense of achievement in one's work... that's a struggle too.)
For instance, I still struggle with procrastination at work and avoiding starting tasks... I can often take my dose and then proceed to hyperfocus on social media for hours on end. But once I am working, it's great. I first noticed the impacts of the meds when I could actually enjoy just playing with the kids and not constantly battle with feeling like I should be doing something else.
The pill can help you maintain interest in something, not start that thing. I don’t have an answer to this problem. I’m 34. I don’t take anything for my disorder anymore. Either tolerance builds up, or the novelty wears off and my intention to start things declined as a result. And I end up back where I started but now I’m taking drugs everyday.
On my brother. I think that he doesn’t have ADD. That his issues at school were unrelated, and Ritalin just made him more anxious and neurotic.
I hope you can get help. I have a few family members with schizophrenia / bipolar disorder and the way society treats them is like shit.
And yes, like shit is the right way to put the treatment. But I understand, it is so hard for people to not see my disorder as something I willfully express on the world. I know a better understanding is around the corner, but I am afraid treatments will take longer to appear. It is a slow process.
And thanks.
If you do, what treatment options does that offer? Can you pursue that treatment without an official diagnosis?
https://my.clevelandclinic.org/health/diseases/15612-mitocho...
mentions no prescription-restricted treatments, just vitamins, diet, exercise, and rest. It mentions therapy, but general skills therapy, nothing specific to mitochondrial disease.
- What hopes did you have when you were younger?
- What did it look like when you started failing?
- Do you think a different turn of events would have avoided that?
I feel like I was on the high path up to 25 years old, I’m earning now, but I’m getting inexorably rid of my friends, one after another. I’d like to know where I’m at…
All it proves is that there is a big housing shortage.
Have you tried taking your van somewhere where housing is dirt cheap?
I hear small poor towns are better at taking care of the downtrodden too. Walk into the church poor people go to, and see what happens.
And go to a poor town? And not have healthcare, be away from my friends and support? But yes, I have tried it. They ask me what I do and when I say I am on disability they deny me the rental. And many of these towns will not let you live in your van while you are looking.
It is inequality, not a shortage.
I am telling you, you have no idea what it is like.
Advice that I've usually found more valuable was formatted as "here's an option and here are the possible pros and cons". These people also did more listening than 'should-ing'. They also didn't have the audacity to tell you what is best, which is implied by 'should', because they weren't in your shoes and neither completely informed of the context so how would they know what's best?
Which is a symptom of people not caring.
And through all this I keep up my research on my familial disease, pressuring doctors to at least do some tests. I am pretty sure, looking at my genetics, I actually have a mitochondrial disorder. This is an easy test, but they will never do it. They just keep focusing on the same old pathways and that is why there is no progress.
The medications? They do nothing but make me worse. They usually give me drug induced lupus or just make me more suicidal the next day. The only one I can rely on is Klonopin, it works great but I do not take it everyday adn I only take a very low dose, the lowest that works. And every time I get a new doctor I face the stigma of being a drug seeker. Luckily, that is not so much of a problem anymore.
Now iwth COVID, everyone thinks they haev a mood disoder but in reality it is just situational, but they take up all the appointments so now mine are getting pushed further apart.
My nephew hung himself at 14 years old after a doctor thought he had ADHD and gave him ritalin. It was a misdiagnosis.
If you do not have a serious mental illness you have no idea how bad the treatments are and how they ignore any other issues you have in your body. We are the garbage people in this age but we probably used to be the shaman.
So all I can do now is drink a bit to escape, its a great drugs, an awesome calcium channel blocker.
Oh well, that's enough of that. Just wanted to share.