What does it mean to you when someone is classified "autistic"

and which forum do you think I should post requests for data concerning autism.

I am working on a pilot program to bring autistic children out of institutions and unify them with their communities and family. I was chosen for this job due to my patience and compassion. I need to learn a lot more about autism, and I want to hear your thoughts on the subject.

What does autism mean to you?
What are your experiences with autism?

Sorry, couldn't help it!

:rofl:

:toast:

It used to be when I would tell people my Sister is Autistic.. They would say, what does she paint? At least it has more exposure today than 20 years ago, for sure.....

http://www.thomaspages.org/bloggg/ - the Bloggist does lots of political stuff, but she has an autistic child and is very up on the issues involved. She's quite good, in my opinion (a fellow Liberal Coalition member).

Bryant
Check it out --> http://politicalcomment.blogspot.com

peace to you

as a developmental disability - which means medical insurance doesn't cover a lot of the treatment needed. One problem with categorizing is that the autistic spectrum is very wide. For some, it's a mild disability, for other it is very profound.

It is a medical problem, neurological, psychiatric, and social problem. For some kids, it may be based in the immune system, but we don't necessarily know, do we? I get angry over insurance companies not treating this as a medical problem, preferring to think of it only as a developmental delay that a child will grow out of. True, there are many things the child can learn to do, but the medical condition is still there.

I coud go on forever, but my autistic son and his younger brother are doing some water coloring in the garage right now. I am scheduling as much as I can for his summer, and he has about 5 weeks of sumemr school this year.

Also, I am pissed that I spent over $2,000 with someone who is supposed to be helpful with ABA stuff, but it hasn't been worth that. I should have gone somewhere else.

My parents had her diagnosed at age 5 when they could not potty train her... There was at the time, no clinics or specialist in this field, so they referred her to the Cerebral Palsy clinic, which of course, did not help. She never spoke until we sent her to school, when she was 14, in Victoria Texas for 2 years. I don't know what they did, but she came home speaking, a different person from the one who used to grunt to make her wishes known.

After that, my Father swore he would never send her to another school, we missed her too much. She is able to do chores in the kitchen, plus cleaning and doing her own laundry.. She interacts with us, but she would rather be alone tapping up in her room... She is constantly moving and loves to tap.

She is middle age now and we decided she needed to be with people like herself, so she is in a state home (a house) with others like her.. She works half a day and has activities the other half.. She is happy and loves it there and we think we have done the right thing for her... It beats her staying in her room all the time...

Sadly, her health is failing.. She has high blood pressure, diabetes, and glaucoma..

She is my best friend, I have never known anyone as innocent and sweet as my little sister....

You just made me tear up......bless you. :cry:

Sometimes you just get to experience a little more in life than most.. I feel blessed to know her:hi:

I enjoyed reading your post. And thanks and peace to sparosnare too! :patriot:

i basically didn't speak either until i was 13 but i had a better outcome, knock on wood

I teach special ed and I didn't realize kids were still institutionalized for autism.

There are lots of programs in public schools. Go visit a classroom that serves autistic kids. You will probably learn more there than by reading a book or a link someone posts here.

and are classified as Autistic.

It may be that their parents couldn't meet their needs, or because the community couldn't meet their needs. These are not private placements, they are facilitated by family court. Some are voluntary, some are not. Sometimes it is a money issue.

I am meeting with families that have been successful in meeting the needs of their kids and attempting to build a program that supports the family unity of families dealing with autism issues.

Good for you!

I still think it would do you good to visit a classroom for autistic kids. If kids are released from institutions, wouldn't the goal be for them to be able to function in school? So it would help to see what the expectations for them would be.

my sister was a special ed teacher down in the city and at west point. She is helping me out. I am also meeting with local families.

:)
peace to you.

could very well be...

normal sensory stimuli are perceived as pain or extreme irritants. The autistic person blocks out the stimuli as much as possible by perserveration and other, sometimes, seemingly bizzare methods.

I have occasionally subbed in classrooms set up for autistic kids (mostly teenagers). I had heard for years that one must never touch an autistic child because touch is painful to them. I found that this is an over generalization. Some autistic people find touch to be painful, not all.

Most of the autistic teens I have been around have been really sweet kids. Some want to hold your hand or have constant conversation with you. Some don't talk much at all (one comes to mind, he has the sweetest smile), while others will talk your ear off. One never mentions hot dogs around one girl, because she would then launch into an hours long request to make hot dogs for lunch or snack.

What I have not seen in the autistic kids is the stereotype of sullen, combative child. One girl would start a high pitched keening and would show signs of stubborn uncooperation on occasion, and that was the closest I saw of the media version of autism. Another, for whom English was a second language, would smile and spout gibberish (which might have been one of the slavic languages interspersed with English and gibberish) would smile as she ignored any instructions and continued babbling away. She was a good mimic and would occasionally spout out orders to the other children in perfect English...

While I wouldn't want to work with these kids all the time (I love them, but find the work rather stulifyingly boring), I do enjoy being with them on occasion.

autism spectrum -- it ranges from folks diagnosed with Aspberger's Syndrome, very high functioning very intelligent folks who struggle with the social and non-verbal aspects of communication, to those so removed from language communication with the outside world they they are basically self-contained. Each individual is different, with different behaviors, perceptions, and characteristics. Many Aspberger's individuals are among us, functioning every day, working complex jobs. (It has only recently been understood as falling on the autism spectrum disorders scale.) In fact, many individuals are seen as merely eccentric, obsessive, a bit difficult to communicate with socially. Autism research is identifying the tremendous variation in individuals and attempting to develop ways to help parents attend to the needs of small children once they are diagnosed. My nephew was evaluated as an 18 month old, when it was clear that he wouldl not make eye contact with others, was not beginning to speak, was uninterested in what should normally fascinate a toddler. He is a now a busy happy fifth grader, a very high achiever, who will do just fine. Early intervention, communication strategies from specialists, and loving family have launched him on what will hopefully be a great future.

separate problems. While Auspergers is related to Autism, they are not the same.

People with Auspergers are usually able to function in the normal world with few accommodations. Those with Autism usually cannot even with accommodations.

Even within Aupergers, there are many different ways of manifestation. My stepson is quiet and doesn't talk much, tends to keep to himself, and doesn't draw attention to himself (but can bore one to near death with facts about his main interests). It has taken him years, but he is liked by others even if he doesn't have friends as most of us define friends.

Another child with Auspergers that I know is such an annoyance that none of the kids in his school want anything to do with him. He is always trying to draw attention to himself, is loud, constantly talking (and during an important band evaluation made Senor Wenches type puppets with his hands along with other inappropriate behaviors which infuriated his fellow band members). This child is very intelligent, but doesn't have a single friend; no one likes him. (I do feel sorry for him, but he doesn't seem to know that he isn't liked.

"high" or advanced end, where folks with Aspberger's Syndrome tend to be, to the other end, extreme and severe autism. But the umbrella is ASD. It describes communication and relational disorders that affect an individual's ability to interact with others in meaningful ways using both verbal and non-verbal social cues. All of the very complex behavior we learn from others about how to interact with them, the subtle ways in which humans "read" each other, are distorted or missing in individuals with an ASD. The young man you describe who is loud, out of place, friendless, essentially clueless about how to behave or how he is perceived by others is a classic example of the fallout when one suffers from an ASD. It's very difficult, because therapy requires direct conscious "instruction" in how to interact and respond to people, and it doesn't always prove to be effective.

perhaps imitation? I wonder if there is some sort of "mentor" therapy for those with ASD that do not respond to direct instruction.

The kids were severely disabled enough that they couldn't be placed in a regular classroom. All of them had perseverative, self-stimulating behaviors. None of them had verbal skills beyond those of a two-year old and most couldn't speak, at all. Most of them looked "normal,' by society's standards. However, by their movements (walking, interacting with objects, eating, etc.), it was pretty clear that they were disabled.

None of them "improved," over the course of the year. This was probably becaause the teacher was not very effective but also because the condition, itself, was so poorly understood back then. It was still widely assumed that autistic children were the victims of detached and incompetent mothering.

At that time, the book, Son Rise, by Barry Neil Kaufman, had been out only for a year, or so, and, in some quarters, the author's ideas about helping autistic children were considered heresy. If you haven't read that book, I recommend it.

:kick:

A training period where they teach you what you need to know?... Just wondering...

We are actually creating a program. The program doesn't exist yet. We have a MD and a CSW, plus an manager of a group home for autistic kids. I am working with a group to create a program.

My job will be to meet with families to determine if they can meet the needs of their institutionalized autistic children with strong community based support. The service plan will be a family and team (MD, CSW, and me) effort.

I have a lot of experience with individual autistic kids. They picked me because I pretty much worked a miracle with one particular kid (I got him involved in a local political campaign. He loved it. He was on the verge of being institutionalized, and he was able to pull it together and is now a valued adult member of our community. He is, of course, a democrat :)).

What I'm trying to do is find out what services are needed for this population.

:toast:

TEACCH

before you all go about re-inventing the wheel. :)

http://www.teacch.com/

thanks

this is more or less what we are gonna try to do. Since each community is different, there is a little bit of "reinventing the wheel" that needs to be done (specifically for funding. We are going to be working with families that weren't able to meet their kids needs within the community, but would be willing to try again with community based support).

This is a really great link and I appreciate your pointing it out to me.

Peace!

in re: the homeschooling community - might help you, too. At the very least it can hook you up with people who ARE "trying this at home". It's a very resourceful community, btw.

Good luck!

There is a SPECTRUM - you aren't "just autistic" anymore. (Really - google is your friend :) )


As for forums on DU - I'd suggest the Education and Parenting forums for starters (and maybe the homeschooling one, too. I don't know about on DU - but there are increasing #'s of people hs'ing their autistic spectrum children. I just posted some hs'ing autism links in the Parenting forum, btw.)

edit to add: http://www.autism.org/temple/visual.html

Remarkable information

There have always been autistic "savants" who fit the classic picture of withdrawal and isolation except for this one particular gift of theirs, be it drawing or playing the piano. Then there's Bill Gates, Daniel Tammet, and others who have genius-level IQ but struggle with many day-to-day activities – I think they've all been diagnosed with Asperger's.

Lacking an authoritative citation, it's wildly irresponsible to diagnose Asperger's (as well as most other neurological disorders) from afar or from beyond the grave.

If you have evidence to the contrary, please share.

You're the one making a wild, unsubtantiated claim, and you're requiring me to disprove it? Sorry, but it doesn't work that way.

If you're making the positive claim (i.e., that Gates et al have autism/Asperger's/whatever), then it's up to you to support that claim. It is not up to me to refute it.

Alas, you're making the same simple mistake that advocates of pseudoscience make: "Any claim that I can make is considered valid until proven invalid."


Nope.

I'm not making the claim up - check out this MSNBC article on Gates:

http://www.msnbc.msn.com/id/7899821/

adults classified as profoundly autistic.
I was a job coach, which meant I trained people for specific job tasks.
Most of my clients had a hard time in the beginning, due to change in their ritual behaviors.Most of the first weeks were spent trying to integrate the new tasks into the ritual.
It was a very rewarding but often difficult job.

My wife manages a home for mentally handicapped adults. Occasionally, she'll fill in for some of her job coach friends in the company's workshop. On Wednesday, she told me an interesting story about one the clients who is autistic. Beyond using single words to communicate wants/needs (e.g., Gatorade, pencil, magazine...), he seems incapable of communication. One of his favorite activities is to copy entire articles from the magazines he requests. He refuses to use lined paper, yet he writes in straight lines and his letters look as if they had been typed. An IQ test was recently administered... My wife did not hear the exact number, only that he scored "beyond genius."

:hi:

peace!

Autism linked to aberrant chromosomes

New research has revealed a connection between aberrant chromosomes and autism.

http://www.scenta.co.uk/scenta/news.cfm?cit_id=809745&FAArea1=widgets.content_view_1

Eight children with four different disorders with autistic features were studied by the
Sahlgrenska Academy at Göteborg University in Sweden and all had an extra chromosome,
one damaged chromosome or pieces of chromosomes missing in their genes.

The children in the study had Asperger’s syndrome, infantile autism, ADHD, and Rett’s syndrome.

These are so-called autism spectrum disorders that all involve some form of contact disturbance.

The cause of these diseases is not known.

"Both heredity and environment play a role," said researcher Tonnie Johannesson.

"I believe it’s a matter of several genes working together, and if one chromosome is damaged,
there may be genes in that chromosome that have been damaged or are missing."

It is not known precisely which genes cause the disorders, but the study provides
an indication of where these genes might be situated.

"It’s as if we haven’t found the needle in the haystack yet, but now we know which haystack
to look into," explained Johannesson.

The research shows that two boys with Asperger’s syndrome had nearly identical aberrations
in a chromosome - a break on chromosome 17 in almost exactly the same place.

"It is remarkable to find such a similarity between two unrelated patients with the same disorder,"
added Johannesson.

Following in-depth analysis, Johannesson managed to find the faulty gene in one of the boys.

The study shows that the damaged gene is of importance to the brain, but it is unclear
precisely what role it plays in brain development.

Infantile autism is a form of disease that expresses itself during the child’s first year.

The study shows that four unrelated boys who have the disorder all had a small extra chromosome,
displaying three chromosomes instead of two on the fifteenth pair.

In a mildly mentally retarded boy diagnosed with ADHD the chromosomes had changed places
with each other.

Three of the chromosomes had been switched around, but all the chromosome pieces seemed
to be there.

On the other hand, a girl with a disease resembling Rett’s syndrome proved to be lacking
a piece of a chromosome in the third pair.

"Genes are presumably the cause of these disorders, but we still don’t know which ones they are,"
said Johannesson.

Source: scenta

Date Published: May 22, 2006

My heart goes out to all of you affected by Autism. :hug:

vaccinations.

:sarcasm:


Thanks for the link. I try and keep track of scientifically based information. I hadn't seen this particular one yet.

been diagnosed since childhood with Autism, sent me the link.

But don't forget...they're not saying that IS the cause. Mercury could still be a factor.

"The cause of these diseases is not known.
"Both heredity and environment play a role," said researcher Tonnie Johannesson."

:evilgrin:

EDIT: Damn. Didn't catch the first reply. Beat me to it!

See reply #1

The autistic people I've known seem to have the most trouble with the give and take that's normal human interaction.

My nephew is a very bright boy who seems to think of other people as something one must learn to operate. To get his message across, he issues very explicit instructions. For instance, he won't say, "Let's get some ice cream," he'll say, "I want you to drive me to the ice cream stand now so I can buy some ice cream." During dinner, he might suddenly say about the dinner conversation, "I've heard enough about that now, you can talk about something else." He's got a government job with computers now and does very well because computers are much easier to operate than people.


There's an autistic young man who works as a cashier at the grocery store I frequent. He's extremely efficient and keeps up a contstant stream of greetings and chatter. But his timing is totally off--he can't time his conversation to mesh with what people expect. It's quite odd and disconcerting the first couple of times you run into him, but I always pick his checkout line now because he is so very efficient.

Because the child can't sort it all out, he or she shuts down to varying degrees.

Most of us develop an ability to screen our perceptions, to recognize what is real and what is not. I think some children don't develop it, so everything that hits them has equal value, whether it's a shape in a shadow, or a car coming at them. It's like they are on sensory overload, so some shut down completely, and some develop coping mechanisms that others just don't understand.

As a social worker (not a medical person), I think autism is really interesting. It affects each person differently and to a different degree. I've met some high-functioning autistic adults, and I really think that the key to overcoming or coping well with it will be found through people like them working with kids and their parents as professional counselors. It strikes me that autism is impossible to understand completely if you haven't experienced it yourself.

in Chapel Hill, NC (it's part of UNC) and ask to talk to someone who studies autism or does research on children with disabilities. There are tons of people who can help you out.

I am the mom of a child with autism. Autism has taught me so much and made me a better person. When my daughter was younger, there were times I didn't think I could take another day of the enormous stress that autism places on the entire family. But it gets better over time, and with early treatment kids with autism are realizing much better outcomes than ever before.

I found this video extremely moving, because the emotions expressed by these moms were familiar to me. I also feel such sadness because not every child with autism has such dedicated parents and funding for programs for our kids is getting tighter and tighter. I fear that newly diagnosed kids will not have the same opportunities to grow and progress that my daughter had.

Autism Every Day
Minutes: 13:20
http://www.autismspeaks.org/media/d_200605_Autism-Every_Day_LoRes.wmv

peace!

Is a worthy goal. I would suggest beginning your search with The Arc of the US.
http://www.thearc.org/about.htm

In my experience, they are leading the drive toward independence for people with DD.

My 7 year-old has autism, and it's extremely frustrating for him and painful for those who care for him. He's lucky that he has the most patient person I know as his paraeducator. His teachers are also well-intentioned, but less skilled in dealing with ASD (autism spectrum disorders)

One suggestion: people with developmental disabilities generally prefer to be seen as a person first. i.e. "A person with autism", not "Autistic person". In fact the Washington State legislature passed a law called The Respectful Language Bill, which says that all government publications from that date forward would use "people first" language.

Good luck.

peace!

I know a few couples who are raising autistic kids.

It's no picnic.

:rofl:

It's just that parents of a child with any difference - especially more severe differences - have a little bit harder job figuring out their kid and how best to go about doing the raising.

I think it's getting better, though, as awareness is being raised about developmental issues.

People used to think that you were "retarded" if you were blind, deaf, or "dumb" - but Helen Keller helped change that.

Other developmental delays/challenges can be just as "severe" for the person who has them, but if you can't see them (the challenges) - you don't know what the problem is and how to go about addressing them.

PM me if you'd like some info.

But you're also asking for "opinions."

My first cousin is autistic. He's from the side of my family I never knew very well. (Long story, no blame.) First, doctors thought he was deaf. Then the dx was "retarded." Finally "autism" was mentioned. He never became verbal, is over 50 now & lives in an institution (not sure of the details). On home visits, it's apparent that he prefers the other place. Diagnosing & treating these folks has advanced since his youth. I remember when autism was considered the result of parental "coldness"--a cruel idea since abandoned. He has 4 "normal" younger sibs, 2 of whom are extremely bright.

I seem to have some of the "Asperger's" characteristics. The dx wasn't around when I was a kid, but it might explain some of the "weirdness" others noted. By now, I just deal.

My spouse has worked with the mentally handicapped for over 20 years.

What do you mean by bringing children our of institutions into the community.

Consider a school environment. Some kids are highly functional, and work well in a normal school environment. Other children, it is much better if they stay in the special ed program so that they get the special attention they need so they can develop.

The worst thing that some schools try to do, is take lower functioning students and try to place them in a 'normal' environment. There is too much stimulation and it only exasperates the child's condition and the child starts behaving worse.

I hope this helps.

this is what were tryin---

Some families can't meet the needs of their kids... the kids get placed in institutions (juvies, hospitals, foster homes, group homes, residential centers) by family court.

Some families want to meet the needs of their kids, but need help.

We want to help.

We are looking to help families with autistic kid in placement. We want to support the families so that they can reunify their family and get their kids home from placement.

Please have your wife PM me with some info on her work. Peace!

that was held 2-3 times a week. They both had small parts and slowly adjusted to the group setting. Both were very intelligent, but with limited social/communication skills.

One of the kids had aspergers and I don't know what the official diagnosis of the other kid was.

They were in a mixed age group of 10-17 year olds.

Just thought I would mention this as a possible activity for kids to participate in in their community. Most towns have a community theater, if not a theater class at their school.

all kids... thanks for the post.

I have a LOT of experience and training in this area.

peace!

To me it means a brain that functions differently than most, affecting the way that person perceives and interacts with the world.

My experiences with autism include one 1-day "workshop" on educating the autistic, and 6 years working with an Asperger's student, including personally doing the research that led to his diagnosis.

peace and low stress

... the whole definition of autism is complex, wide ranging and changing fast. Autistic kids range from those who are almost completely disabled, to those (like mine) who are somewhat functional.

You have a lot of reading and study ahead of you. The causes of this disorder are still unknown, but there are several suspects. Instances of autism have been rising rapidly for a while now - some think that is just improved diagnosis, most do not.

Good luck in your work.

A new judiciary forming that will take away civil rights successes for the learning disabled of recent decades. Hatred for the gang of 14 (and the dems involved) as well as for the republican extremists in office and the creeps they nominate for the courts.

you and your boy are in my thoughts and prayers. DLC makes me :mad:

peace to you.

so i don't know what the hell it means

my parents refused the classification and i think it just as well as there was nothing to be done about it then and probably still isn't really

all i can say is there is a WIDE variety of kids slapped w the label of being autistic, some are indeed damaged, but i don't feel that i am and there are many asperger's kids today who feel the same way -- the label is not necessarily a disease but just a different way of being

on the other hand there are autistic kids who truly can't function and taking them out of the institution is just dumping them on a family, by which i mean UNTRAINED AMATEURS, which is fine for saving the state money but leaves the family w. no choice but to run away and hide -- one of my friends is a "throwaway" and while as a matter of practice since he's my friend i hate on the parents, as a matter of reality, he is never going to be more than 11 years old emotionally even though he's a brainiac intellectually and i can't really blame them for running away and hiding, no one has or adopts (he was adopted) a kid assuming they are going to have to tell the kid to take a bath every day when he's 32 years old!

to varying degrees that interfere in varying degrees with functioning in everyday life.

For some autism is profound, for some it dominates life, for some its a big inconvenience, and for its just appears as a quirky personality.

Here are a few websites that might be of assistance:

http://www.nimh.nih.gov/publicat/autism.cfm

http://www.autism-pdd.net/

http://www.autism-resources.com/

The following are articles written by Temple Grandin, a "high functioning" woman with Autism. She has a PhD in Animal Science and is an assistant professor at the University of Illinois. She has amazing insights into what it is actually like to be a person with Autism. How people with this disorder experience the sensory distortions, communication barriers, socialization difficulties and the like. After reading some of her writing it made me understand the people I work with so much better ( I work with adults who have developmental disabilities, some of whom have Autism).

http://www.autism.org/temple/inside.html

http://www.autism.org/temple/visual.html


You may want to post your question in the Disability group. They probably can give you some assistance there. :hi:

mercury-based preservative in the vaccines -- thimerosal -- appeared to be responsible for a dramatic increase in autism and a host of other neurological disorders among children.

http://www.rollingstone.com/politics/story/7395411/deadly_immunity/

you are doing a wonderful thing their kiddo :toast:

peace! And God Bless RFK jr! :patriot: