Autism's lost generation

Post Reply New Topic

Last year, Scott Hartman moved into his own apartment for the first time. He quickly learned to balance his budget, squirreling away money to buy a Blu-ray player or Xbox games. He started taking long walks to his favorite fast-food joints: Hardee’s, Papa John’s, Chick-fil-A, Taco Bell. To get to the science museum or the library, his other favorite destinations, he is learning the intricacies of public transportation.

Scott can enjoy these simple pleasures because two years ago he was finally diagnosed with autism. He was 55.

For decades, Scott had struggled to find his place in the world. Misdiagnosed with schizoaffective disorder and manic depression (now called bipolar disorder), he spent much of his life in and out of group homes and psychiatric institutions, often heavily medicated: At one point, he was taking 18 pills a day.

http://www.theatlantic.com/health/archi ... =SFTwitter

Thanks for posting this. I'm a bit amazed that anyone is looking into this. The part about Parkinson's is interesting and the kind of information that sure as heck ought to be made known.

Interesting. What especially caught my attention in the article are the detrimental effects of overmedication. Thanks for posting.

We read a bit about this on the fringes here but institutions haven't changed a whole lot... they're in larger buildings with fewer staff and hidden behind closed doors plus mountains of paperwork but they aren't treating people so differently these days. If somebody lacks the wherewithal to refuse being force-fed dangerous drugs, sorry but that's on them. Sedation obviously should be administered responsibly but that's not stopping any doctors doing otherwise these days. I'm not saying I had decades of my life robbed from me, mainly that this article draws a line in the sand where little distinction exists - I haven't lived as long as that poor guy spent institutionalized!

What struck me was how the 'professionals' are so attached to diagnostic tests and methodologies which are intended for children. Whilst admitting that this is the case.
The whole "diagnosis process" appears to come with inbuilt Infantilisation. Especially the ADI-R, which IMHO, is entirely inappropriate for adults.

Although never diagnosed I have NVLD/Aspergers symptoms . I guess I was in my early/mid 40s when I came across descriptors for NVLD and thought "Wow,that explains a lot!". Took me years to see the pdoc about my concerns in that area. Unfortunately it was an unproductive encounter. After asking a few irrelevant questions he cut the discussion dead very abruptly.
Due to past ,negative experiences trying to get more help I've not had the courage to press the matter further.
I think though it might explain why after 40+ years of almost exclusively medication I've not come near to what could be called a recovery. The social(interaction) problems especially have been chronic and enduring. The paranoia and social anxiety I experience tied in with the bullying and peer rejection I experienced in my teens for being physically and socially awkward. I had experienced teasing pre teens but nothing like the bullying I encountered on going to public school.
I guess I would like things acknowledged but am pessimistic at nearly 59,and with a lot of water passed under the bridge, that it will make much positive difference to my life.
I manage in a limited/restricted way but it's not a life I would wish on anyone else.

Diagnostic tools need to be extensively researched and validated before you can know if they are reliable. If you don't have good data yet, it's better to modify an existing diagnostic tool than make up a completely untested one.

Firemonkey, that could almost be my story. I took advanced classes in school, was seen as smart, but socially I was inept--a couple kisses in high school and that was it as far as romance. I never fit in anywhere, never held a job for longer than two years despite my abilities.
I am pissed that no one EVER thought "maybe he has Asperger's" and tried to get me some help. Now I am finally in a position to get an official diagnosis.

Where do I go to get the last 40 years back?

Reading sh!t like this makes me glad that I refused to take any of the psych drugs my mother was trying to feed me. Of course back then. The main reason for me doing this was because I was into climbing 100ft trees and diving down to the bottom of a 50ft lake. And the last thing you want to do is be under the influence of some medication while doing dangerous things. I'll bet, if I took those meds. I'd be locked-up today.

Sounds like a guy who got traumatized/victimized by truckloads of incompetent doctors for decades, one after another, until some researchers who seemed to actually give a damn, came along and rescued him. The story really illustrates the importance of a diagnosis for adults and how it can change their lives. Yet, for the past how many years, I had doctor after doctor, completely clueless about the importance of a diagnosis telling me "why do you need a diagnosis if there is no treatment?". Ugh...

I just got my official diagnosis last month, at the age of forty three. My psychiatrist, when I was in high school, diagnosed me as bi-polar and prescribed valium, amytriptylline, and prozac. The longest I've ever held a job was three years, because my mother also worked there. All of those workplace reprimands, at so many different jobs, and every time my mother told me that my problems were my fault, "your life is your choices"; I'm very angry about it.

People say to let go of anger, but after so many years of being literally mistreated, it's really hard.

Yeah, they have nothing to offer. With a long history of seeing specialists (psychologists, psychiatrists, social workers,) I have only seen one that had the tools to help me. She diagnosed me and suggested the medications which have saved my life. That was six years ago. I saw her three times, once with my mother for a childhood history. I was not able to see her more because she works primarily with children and as a professor at the university.
Since then I have been passed on to another useless old white man. "You're far too pleasant to be autistic." He knows nothing. The only tools with which they can diagnose are behavioural. So a successful autistic is no longer autistic. In the minds of most professionals they are mutually exclusive concepts. Go figure...

I resent the big group Autism groups basically ignore anyone who isn't really low or a child, being born before 1990s. My husband could use some services. Like pragmatic speech therapy. Or PT/OT for needs that were never addressed.

Because he pass as NT (BARELY), he's f****d. Our insurance email will pay for nothing because is functioning. Even if they paid.for services, their are no professionals that work with Asperger adults. We have heard, "why bother getting a diagnosis, when there are literally no services for you or treatments."

I have never seen a diagnosis that is so age-ist. Noone tells depressed or bipolar folks, well...yeah...you function enough, quit whining. That is what society and the professionals tells people with HFA and Aspergers. Here's a cup of STFU, and be grateful you aren't in a diaper.

*been fighting with insurance people today, so I am extra bitter about this...

It's the same for just about every other social welfare program. You can get help; but only if you are a child, a woman, a woman with dependent children, or a Syrian refugee ...

I have already been misdiagnosed once, and spent $1,250 of my savings for the privilege (he doesn't accept MediCal and I am unemployed, so other insurance wasn't an option). He couldn't quite put a diagnosis together ("might benefit from", Not Otherwise Specified, "autistic-like", "lacks insight", "struggles to see another's point of view") but was confidently able to recommend his own services in therapy*, plus 'experimental' drug protocols, with lithium and anti-depressants.

I have Inflammatory Bowel Disease, and occasionally this causes bleeding (and often causes chronic pain, panic attacks, anxiety, and depression). There is no way I am going to 'experiment' with drugs that have side effects that could make that worse. And talk therapy with someone who doesn't at least have an open mind about the possibility of autism, well, let's just say I've been down that route once already. It didn't end well.

*He "usually only does assessments, but..."

I think that might be a little unfair. I think most people have no idea about Big Pharma psychotropic drugs. They simply have been raised to trust the doctor. That is normal. Even one of my counselors takes some of those drugs as do many people I know. And once you take the first one, the effects start. But to say that if someone lacks the wherewithal to refuse being force fed dangerous drugs, than it's on them, I think that is a bit harsh. We know many people and I my husband and I are the only people we know who are not on something. But we do the research so we understand how these drugs are. But not everyone researches them and many people see doctors as educated authorities who have only their best interest in mind.

The problem isn't with the patients, it's with the pharmaceutical who put out these dangerous drugs and push them as safe. And doctors, especially of the older generations, are only trained in drug pushing. They know nothing else.