I've also noticed that people often say a person is autistic when it's really obvious that they are (also?) mentally retarded. The two are NOT the same thing.
I also can't get over the people who INSIST that their Alzheimer's-stricken relative WILL NOT GO TO A NURSING HOME AND I WILL CARE FOR THEM ALL BY MYSELF.
I’ve often wondered whether Katie made up the PW diagnosis as an excuse for Harvey’s size (and for sympathy and attention, which is like oxygen for Katie). The other suspicious thing? People with PW are shorter than average, whereas Harvey is absolutely huge. I honestly think his obesity is due to being badly and chaotically parented by his mother, who has... lots of issues.
She definitely had issues that still continue. The interview about having to put Harvey in residential care also included her admitting to coke benders within the last year or so IIRC. Her relationship with him was always a bit weird though from what I can remember. I’m not sure if it was bc he was her first child, bc of his disabilities, or bc his father made it clear he wanted absolutely nothing to do with him. Partly, I think she was especially clingy with him bc mentally, he was her eternal child who would always adore her. She’d shared a video of him she’d taken not long before moving him into a care facility that showed him in bed with her & snoring. Regardless of his mental defects, I think it’s inappropriate for a mom to sleep in the same bed as her 17-18yo son. I imagine it would be exhausting with him too since she’s said numerous times that he has wet the bed at least twice a night basically his whole life. I can’t imagine getting peed on in bed & having to clean the mess plus the 300lb+ mentally disabled man every night.
Just caught up and had some thoughts on Kayli/the Hartley's and school.
My niece is severely disabled, diagnosed with Lennox-Gastaut Syndrome. She started seizing at 3 weeks old, and her development was stunted at that time. It's fucking hard. She goes to a special education program through the public school, all kids who are like her- no muscle control, nonverbal, severe cognitive disabilities, etc. The program serves two main purposes- they do sensory therapy, mild physical therapy, have a Snoezelen room- all things that benefit a child's QoL. There's no illusion of it being a traditional educational experience. But it also serves another important role, one of some respite care for parents. Those precious few hours where you know your child is in a safe place, with a nurse assigned to them that you know and trust... it's one of the few times you can relax.
Seeing these parents do shit like make them cheerleaders?? Take a bunch of photos of your kid propped up like a grotesque mannequin and make a ton of cheery back to school posts? It's disgraceful, dude. The rare photos of my niece that are ever posted online are ones where she's smiling- maybe it's a seizure, maybe it's not, but hey, she's making a face that's not a horrible reminder of her day to day life! If anyone posted a picture with her mouth open like a drunk corpse, her parents would skin them alive. It's just fuckin' mind boggling, the level of disrespect they display for their own kids.
They're not normal, and they never will be. They're not a Barbie to dress up in some morbid display of a life that could have been- they're your child. You had a dream of what life would be, and shit went sideways. All you can do is minimize their pain, do any available sensory/physical therapy, and keep them as healthy as possible while going to therapy yourself. It's okay to mourn, it's okay to admit that your kid might not be in there, that this feels hopeless. This inspiration Jesus porn bullshit makes me want to vomit.
But, you all know this shit. I'm just up late and full of impotent rage.
I logically know it can't be anything else but I am having a LOT of trouble actually accepting what I am seeing... is that two eyes merged into one horrifically large and misplaced eyeball?
Edit: oh my god I'm an idiot, I started reading this thread from the beginning and responded to a page two comment. Don't mind me.
I've also noticed that people often say a person is autistic when it's really obvious that they are (also?) mentally exceptional. The two are NOT the same thing.
The joke fifteen years ago in our city was that rich people had autistic kids and poor people had retards.
There were two programs in the county, one was for developmentally disabled kids (funded by medicaid) and the other for autistic kids (funded mostly Private insurance). The kids in both groups were virtually indistinguishable from each other, the biggest difference was the socio-economic status of the parents.
Theres many factors that cause it to be low or high functioning autism.
"Severity is based on social communication impairments and restricted, repetitive patterns of behavior"
The three levels are (3 low, 2 medium, 1 high to simplify):
Social Communication
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches
Restrictive, Repetitive Behaviors
Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Social Communication
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and how has markedly odd nonverbal communication.
Restrictive, Repetitive Behaviors
Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Social Communication
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
Restrictive, Repetitive Behaviors
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper indedependence.
Interesting bit on Intellecutual disability with Autism:
Autism spectrum disorder. Intellectual disability is common among individuals with autism spectrum disorder. Assessment of intellectual ability may be complicated by social-communication and behavior deficits inherent to autism spectrum disorder, which may interfere with understanding and complying with test procedures. Appropriate assessment of intellectual functioning in autism spectrum disorder is essential, with reassessment across the developmental period, because IQ scores in autism spectrum disorder may be unstable, particularly in early childhood.
Merging of Asperger's was by this rule:
Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not othenwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
Specifiers that exist with an autism diagnosis:
With or without accompanying inteliectual impairment
With or without accompanying language impairment
Associated with a known medicai or genetic condition or environmental factor
Associated with another neurodevelopmental, mental, or behavioral disorder
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)
From what I've seen, most of the 'middle functioning' kids probably have normal ish IQs. The problem is that when there's speech and language problems the testing isnt going to be as accurate. You get a sense of it - how much the kid tries to figure out stuff.
(Also, the difference in IQ is most noticeable between those severely retarded and normal whereas those around 70 are harder to pick out.)
I'd say it comes down to their capacity to learn - if they're teachable, their IQ ain't that bad. If it's bad, they wont learn much of anything. Hence why IQ is a better measure with functional skills involved. Low IQ autists often never learn basic life skills. The more they can learn and do learn those things, the greater the likelihood their IQ is closer and closer to average regardless of their language and sensory issues.
I.e. I've met nonverbal autists who couldnt do any basic life skills after years and years of work and others who were doing their grade level work in school.
I logically know it can't be anything else but I am having a LOT of trouble actually accepting what I am seeing... is that two eyes merged into one horrifically large and misplaced eyeball?
Edit: oh my god I'm an idiot, I started reading this thread from the beginning and responded to a page two comment. Don't mind me.
I think it's often that they don't realize how bad it's gotten because it's been gradual. The tantrums that are easily handled when they're coming from a small child get a lot more dangerous when it's a large adult male doing them, and at the same time, the parents age and get weaker. But it's not like the change is sudden, and they get acclimated to it and it isn't easy for them to give up after putting that much time into it.
My mother was actually given a concussion while she was working at a grocery store by an autistic woman having a tantrum.
The woman was told by her elderly mother that she couldn’t get something. My mom was just walking by when the autist grabbed her by the hair and slammed her head to the ground...
From what I've seen, most of the 'middle functioning' kids probably have normal ish IQs. The problem is that when there's speech and language problems the testing isnt going to be as accurate. You get a sense of it - how much the kid tries to figure out stuff.
(Also, the difference in IQ is most noticeable between those severely exceptional and normal whereas those around 70 are harder to pick out.)
I'd say it comes down to their capacity to learn - if they're teachable, their IQ ain't that bad. If it's bad, they wont learn much of anything. Hence why IQ is a better measure with functional skills involved. Low IQ autists often never learn basic life skills. The more they can learn and do learn those things, the greater the likelihood their IQ is closer and closer to average regardless of their language and sensory issues.
I.e. I've met nonverbal autists who couldnt do any basic life skills after years and years of work and others who were doing their grade level work in school.
Intellectual disaiblity is a specifier added on later if needed, but its assessed on social functioning and repetitive behaviors and how much functional help is required to function in society. IQ testing really isnt used anymore because its unreliable especially in populations where they may be non-verbal or unable to follow directions.
You can be autistic and intellectually delaeyd it would be called co-morbid disorder. Many people with low functioning autistism do have intellectual disability, but it is not a requirement. Autistic behaviors also can be symptoms of disorders that mean a person may "act autistic" but not be deemed autistic.
This can be seen in childhood disintegrative disorder, pervasive development disorder, rett syndrome, cases of severe neglect, etc.
I didn’t mean to infer that it was, apologies if it came across that way. I just wanted to point out, in response to booklover’s post about people being described as autistic and not exceptional even if they are both. My point being they can co-occur to such an extent that IQ was used to distinguish between “high-functioning” and “low-functioning” back in the day.
I logically know it can't be anything else but I am having a LOT of trouble actually accepting what I am seeing... is that two eyes merged into one horrifically large and misplaced eyeball?
Edit: oh my god I'm an idiot, I started reading this thread from the beginning and responded to a page two comment. Don't mind me.
To me, the biggest issue with putting kids in institutions is there's still a lot of abuse and neglect that goes on in them. I've mentioned before in this thread I think, but that shit even happens in special ed programs at school. A lot of sick fucks have realized they can usually get away with abusing disabled people, so they seek out those kinds of jobs.
Kids also do get sent to institutions that don't belong there i.e. kids with behavior issues from abuse. It is very, very easy for abusive parents/caregivers to get away with pretty much anything they want if the kid has some kind of diagnosis, because unfortunately the system is set up to believe parents before problem kids.
Even in general special needs shit you kinda see this. How much stuff is actually focused more on the parents than the kids? How much stuff treats non-disabled parents as experts before actual disabled people? How many cheesy "pray for autism/special needs/whatever parents" shit do you see? In general society, disabled kids are treated more as objects with their parents as the actual real people.
Caring for kids with a lot of support needs is rough, but I can definitely understand being hesitant to put them in institutions.
If you go back & read some of my previous posts. I mentioned that my family does put my nephew (I'll just say it) into social situations, but we don't do it to the extent where it will ruin other people's experiences. There's no sense in getting him upset & making others uncomfortable. It's a balance. We aren't going to force him to sit through a movie in a theatre, but we will take him grocery shopping. He may fuss a bit, but we're lucky in that he isn't runner, he's pretty content with his iPad & he won't throw things from shelves or scream. I know it's odd to say "we're lucky" with a kid who will need life-long care, but we are in the sense that he isn't destructive or violent. But it's different for each family. Yes, you and your child absolutely have the right to exist in society...but I also think you need to take other people's feelings and needs into consideration.
I also remember another story a few years ago about a church that banned a family with a severely disabled child, or more specifically the son, who was a teenager and (among other things) would urinate and masturbate with no inhibitions. Yeah, people don't need to be exposed to that kind of thing, and this was one of those cases where I personally thought he ought to be institutionalized. (I almost said "put away" but that's really a derogatory term, once used as a recommendation for parents so other people wouldn't be uncomfortable looking at their child with Down syndrome, leg braces following polio, etc.)
The joke fifteen years ago in our city was that rich people had autistic kids and poor people had exceptional individuals.
There were two programs in the county, one was for developmentally disabled kids (funded by medicaid) and the other for autistic kids (funded mostly Private insurance). The kids in both groups were virtually indistinguishable from each other, the biggest difference was the socio-economic status of the parents.
Until about 20 years ago, ADHD seemed to only exist in white children from low-income families. Nowadays, it seems that all children are assumed to have it until proven otherwise.
I also remember another story a few years ago about a church that banned a family with a severely disabled child, or more specifically the son, who was a teenager and (among other things) would urinate and masturbate with no inhibitions. Yeah, people don't need to be exposed to that kind of thing, and this was one of those cases where I personally thought he ought to be institutionalized. (I almost said "put away" but that's really a derogatory term, once used as a recommendation for parents so other people wouldn't be uncomfortable looking at their child with Down syndrome, leg braces following polio, etc.)
I'm a firm believer in early intervention. It sucks as a parent to accept a diagnosis of autism or whatever, but it's what's best for you child. Get those interventions, start routines, help them learn what is acceptable and what is not. No matter how 'low' they are, they need consequences, no matter how simple or short. It helps them learn to go out in society and not jack off.
As much as I hate hate hate using this word, a lot of these children are 'trainable'. You train them when to do certain things and when it's not okay to do them. But some aren't trainable. And in that case, you make the hard choices. My family has never had to make those decisions (thank God & I don't think we will), so I can't say what we'd do.
I'm a firm believer in early intervention. It sucks as a parent to accept a diagnosis of autism or whatever, but it's what's best for you child. Get those interventions, start routines, help them learn what is acceptable and what is not. No matter how 'low' they are, they need consequences, no matter how simple or short. It helps them learn to go out in society and not jack off.
As much as I hate hate hate using this word, a lot of these children are 'trainable'. You train them when to do certain things and when it's not okay to do them. But some aren't trainable. And in that case, you make the hard choices. My family has never had to make those decisions (thank God & I don't think we will), so I can't say what we'd do.
Why? Even normal toddlers and children need to be trained. You start with training them to shit in a toilet and work up from there. Up until a few generations ago there everyone understood kids needed trained, the only bad part was quite a bit of physical violence was used to do it.
Not that I blame them. If you look at the housing and the world people lived in 100 years ago there weren’t a lot of second chances. You didn’t get to use the soft touch and redirection. A kid ventured near the pond, played with stove matches, got behind the horses, hid around machinery, etc... just beating the bajezus out of them probably saved them from grave injury or death.
But spoiling kids was considered a high crime because it left them ill prepared for life. Even rich, royal families enforced strict discipline to avoid a spoilt child. (The czars’ children were required to talk cold baths, sleep on hard beds, take rigorous lessons, etc...)
But people today seem to have lost sight of the importance of it. Hell, most people are even too lazy and inept to train their dogs.
Until about 20 years ago, ADHD seemed to only exist in white children from low-income families. Nowadays, it seems that all children are assumed to have it until proven otherwise.
Because people have forgotten how to train and discipline kids. Mothers get upset little Conner is a bratty monster because she’s never set boundaries or enforced discpline. It IS a lot easier just to give a whiny kid what they want so you can keep looking at your phone in peace. By the time they get to school moms are glad to be rid of them and teachers want to drug them into submission because they are so difficult to deal with. Parents are apt to throw fits if any discipline is used on their precious angel, whereas in the past parents were very clear on respecting and listening to teachers.
All children need training, it’s part of learning to live in a society. Autistics and retards need different forms of trading but they are not exempt. It’s a disservice to kids to let them be feral and then just use drug to force compliance.
I believe that a major cause for the "increase" in ADHD is the elimination of recess in some schools. This is not a typo.
Young children need to burn off their pent-up energy, and they don't have lengthy attention spans (usually). Plus, ADHD is NOT about violent, anti-social behavior; people who have it often say things like "I feel like I have a tornado in my head" or they say it like someone has a remote that is constantly changing channels in their brain. Not a small number of adults have been evaluated for it (autism too) in the wake of a young relative's diagnosis, and received the proper meds, therapy, etc. and led to improved quality of life for both themselves and their families, employers, teachers, etc.
When I was in college, a woman I worked with (who I recently found out has since died) told me that her 10-year-old son had been diagnosed with ADHD, and put on a low dose of Ritalin. It was a very dysfunctional family situation and I sort of rolled my eyes a bit, and then she told me that in 2 months, he improved 6 grade levels in reading. That's what it's for, not for people who want their kids to get "crazy checks" (AKA SSI) or who think they can turn their normal, average kids into superstars with a few pills.
As for training kids how to behave in public, with some disabled kids (and adults), that's just not possible. There do exist people who cannot go out in public because of their behavior; Alzheimer's can do this, and so can other forms of traumatic brain injury. It can be a very tragic situation for all involved. Maybe I lead a sheltered life, but I rarely see really badly behaved kids in public, and when I do, 99% of the time, the parents are acting worse than the kids.
That's what it's for, not for people who want their kids to get "crazy checks" (AKA SSI) or who think they can turn their normal, average kids into superstars with a few pills.