Autism

[GhostGirl]

Growing Old with Autism

 

A sad but realistic glimpse into the future for families like mine.

[Mara]

How painful the awareness must be. And I am sure you worry about what this means for Kerry's future as well - how much of the responsibility for Stephen's care will be on his shoulders?

 

So unfair.

[Queen of Megadon]

QUOTE (GhostGirl @ May 24 2009, 01:29 PM)

Growing Old with Autism A sad but realistic glimpse into the future for families like mine.

HELL NO! Not realistic, not if we dont let it be.

 

I am starting to see the real disparities for funding of autism programs for young children vs any for young adults. Daniel will age out of his programs in a year. Then there's nothing. So what do I do now?

 

I make calls and I complain and I bitch and I read and I make more calls. If I'm lucky, I'll come across someone else who needs the things I do, and they can start knocking on doors too.

 

We've been doing this all along, always at the front waiting for the next "age appropriate" thing. My son's staff actually looks to me sometimes for information.

 

I'm a working single mom. There is no one to pick up the slack but me. That's just the way it is, so I must keep going.

 

Don't dare let them tell us our children cant have what they need as adults in the future. I'll keep knocking down barriers with my son. You can too GG, and we will all be better for it.

Edited May 24, 2009 by Queen of Megadon

[GhostGirl]

QUOTE (Mara @ May 24 2009, 02:03 PM)

How painful the awareness must be. And I am sure you worry about what this means for Kerry's future as well - how much of the responsibility for Stephen's care will be on his shoulders? So unfair.

I do worry about Kerry. I have promised him that we will provide funds and a place for Stephen to live (meaning, not WITH Kerry) if Kerry will just be a guardian for his brother.

 

I owe both my children that much. I'm not raising Kerry to be in total charge of his brother.

[GhostGirl]

QUOTE (Queen of Megadon @ May 24 2009, 03:20 PM)

QUOTE (GhostGirl @ May 24 2009, 01:29 PM) Growing Old with Autism A sad but realistic glimpse into the future for families like mine. HELL NO! Not realistic, not if we dont let it be.   I am starting to see the real disparities for funding of autism programs for young children vs any for young adults. Daniel will age out of his programs in a year. Then there's nothing. So what do I do now?   I make calls and I complain and I bitch and I read and I make more calls. If I'm lucky, I'll come across someone else who needs the things I do, and they can start knocking on doors too.   We've been doing this all along, always at the front waiting for the next "age appropriate" thing. My son's staff actually looks to me sometimes for information.   I'm a working single mom. There is no one to pick up the slack but me. That's just the way it is, so I must keep going.   Don't dare let them tell us our children cant have what they need as adults in the future. I'll keep knocking down barriers with my son. You can too GG, and we will all be better for it. Yes, I know. I fight for things all the time.   But if I recall, your son is higher functioning than Stephen and I hope the world opens up for him - I will never stop reaching for more, but I DO feel I'm being realistic in OUR particular case. The family in the story has tried very hard too...

[Queen of Megadon]

QUOTE (GhostGirl @ May 24 2009, 06:13 PM)

QUOTE (Queen of Megadon @ May 24 2009, 03:20 PM) QUOTE (GhostGirl @ May 24 2009, 01:29 PM) Growing Old with Autism A sad but realistic glimpse into the future for families like mine. HELL NO! Not realistic, not if we dont let it be.   I am starting to see the real disparities for funding of autism programs for young children vs any for young adults. Daniel will age out of his programs in a year. Then there's nothing. So what do I do now?   I make calls and I complain and I bitch and I read and I make more calls. If I'm lucky, I'll come across someone else who needs the things I do, and they can start knocking on doors too.   We've been doing this all along, always at the front waiting for the next "age appropriate" thing. My son's staff actually looks to me sometimes for information.   I'm a working single mom. There is no one to pick up the slack but me. That's just the way it is, so I must keep going.   Don't dare let them tell us our children cant have what they need as adults in the future. I'll keep knocking down barriers with my son. You can too GG, and we will all be better for it. Yes, I know. I fight for things all the time.   But if I recall, your son is higher functioning than Stephen and I hope the world opens up for him - I will never stop reaching for more, but I DO feel I'm being realistic in OUR particular case. The family in the story has tried very hard too... I hear you GG, and yes, we must each do what is best for our particular situations.     Daniel is an enigma, even in the autism community...he's hard to figure out.   He presents as very typical, and he is striking to look at, he's big and strong, and people are drawn to him. And it takes a minute or so, but then they notice, and they are no longer so drawn to him.   Yes, he is high functioning, that doesn't mean its easy.   In our most recent triennial evaluation, his staff says his academic functions are late 5th grade/early 6th. He enters high school in Sept. Work, home and at school is a struggle. But his oral expression...look at a picture and tell me about it...12+ grade level.   I cant leave him home, cant let him run across the street, cant let him ride a bike without me...he is so very unaware of his surroundings...so I go to game rooms with him, and the playground where he wants to go on the swings, even if there are little kids, and I'm watching all the "big kids" who are there on scooters and skateboards, ripping through the park on their own...and that just cant be for Dan. He's nearly 14, and we are still pretty much attached at the hip.   He has no social life, no friends, no girlfriends, no one calling to say, hey! come hang out and shoot hoops with me. He just doesnt have that available to him...I'm it. And its not right, if he weren't who he is, he'd totally be one of the cool kids! On some level, he knows it, because he is drawn to them. LOL   But he's funny, and knows lots about trains, and wants to work in an ice cream factory when he grows up. He can tell you lots about Japanese Power Rangers, and he's a wonderful actor and story teller.   There will be a place for him I hope. I am prepared for whatever happens. So, I push forward not just for him, but for all the kids behind him and all the moms who need a hand figuring things out.   And hopefully the world will open up for both Daniel and Stephen.

[GhostGirl]

Thank you for sharing more about Daniel.

 

And never think that I'm saying it's "easy" because he's higher functioning...it's just all relative, isn't it?

 

Amen to all you said. Amen.

[Queen of Megadon]

QUOTE (GhostGirl @ May 24 2009, 10:36 PM)

Thank you for sharing more about Daniel. And never think that I'm saying it's "easy" because he's higher functioning...it's just all relative, isn't it? Amen to all you said. Amen.

thank you GG for the it always helps.

 

 

[GhostGirl]

A short blog entry I wanted to share: The Rainbow Connection

[nettiesaur]

GG, that really is interesting.

[Queen of Megadon]

QUOTE (GhostGirl @ May 25 2009, 09:59 AM)

A short blog entry I wanted to share: The Rainbow Connection

i bet Stephen was singing it in his head when he lined them up.

[Rolinda Bonz]

QUOTE (GhostGirl @ May 25 2009, 06:59 AM)

A short blog entry I wanted to share: The Rainbow Connection

 

curious. timothy drives me batshit with the vhs cassettes. ever since he could crawl, he's delighted in tearing them off the shelves. about two months ago, he paved a portion of the floor with them and wallpapered them up the wall 3 feet high. (i wish i'd taken a picture of it now.)

 

can't get him to play with legos tho.

 

anyway, the rainbow thing is kewl.

stuff like that is very validating.

[Mara]

Thought you guys might like this. Some might know that I am nutso over Thoroughbred racing (if I'm online and not here, I'm on the racing forum). I am not a bettor, just a fan. . .

Autism Awareness-The Racehorse

 

He's quite the runner. His owner has an 8 year-old son with autism, and a portion of the colt's winnings go to fight autism. Autism Awareness has a full sister named Cure Autism.

[Lerxster]

QUOTE (GhostGirl @ May 25 2009, 09:59 AM)

A short blog entry I wanted to share:  The Rainbow Connection

[Dweezil]

link

 

 

 

 

QUOTE

Doctors 'need more autism training' Eight out of 10 doctors need more training to spot the signs of autism, according to a new report. The study, from the National Audit Office (NAO), also found that around half of the estimated 400,000 adults in England with autism may be falling through the gaps due to a lack of services. This is because they do not have a learning disability and services are mostly set up for people with illness, physical or learning disabilities, and mental health problems. A poll of 1,000 GPs for the report found 80% thought they needed additional guidance and training to identify and manage those with autism more effectively. Many did not know where to refer people with autism due to a lack of specific services. The study said: "In our survey of GPs, 64% told us that they referred adults with suspected high-functioning autism to adult mental health services, and 19% to learning disability services. "(A total of) 12% were not sure where they should refer such patients, and only 10% reported that they would refer them to a specialised autism diagnostic service." The NAO found that most NHS organisations and local authorities do not know how many people with autism live in their area, something it said should change. It also called for specialist support services. The study - called Supporting People with Autism through Adulthood - said: "Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings." Tim Burr, spokesman for the NAO, added: "Greater awareness of the numbers of people with autism, as well as better understanding of autism amongst those providing health, social care, benefits, education and employment services, would lead to improved quality of life for those on the autistic spectrum." Mark Lever, chief executive of the National Autistic Society (NAS), said: "Neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. This is simply unacceptable."

[1-0-0-1-0-0-1]

QUOTE (Mrs. Huck Rogers @ Jun 5 2009, 12:06 AM)

link QUOTE Doctors 'need more autism training' Eight out of 10 doctors need more training to spot the signs of autism, according to a new report. The study, from the National Audit Office (NAO), also found that around half of the estimated 400,000 adults in England with autism may be falling through the gaps due to a lack of services. This is because they do not have a learning disability and services are mostly set up for people with illness, physical or learning disabilities, and mental health problems. A poll of 1,000 GPs for the report found 80% thought they needed additional guidance and training to identify and manage those with autism more effectively. Many did not know where to refer people with autism due to a lack of specific services. The study said: "In our survey of GPs, 64% told us that they referred adults with suspected high-functioning autism to adult mental health services, and 19% to learning disability services. "(A total of) 12% were not sure where they should refer such patients, and only 10% reported that they would refer them to a specialised autism diagnostic service." The NAO found that most NHS organisations and local authorities do not know how many people with autism live in their area, something it said should change. It also called for specialist support services. The study - called Supporting People with Autism through Adulthood - said: "Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings." Tim Burr, spokesman for the NAO, added: "Greater awareness of the numbers of people with autism, as well as better understanding of autism amongst those providing health, social care, benefits, education and employment services, would lead to improved quality of life for those on the autistic spectrum." Mark Lever, chief executive of the National Autistic Society (NAS), said: "Neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. This is simply unacceptable." Truth.

[GhostGirl]

QUOTE (1-0-0-1-0-0-1 @ Jun 4 2009, 11:17 PM)

QUOTE (Mrs. Huck Rogers @ Jun 5 2009, 12:06 AM) link QUOTE Doctors 'need more autism training' Eight out of 10 doctors need more training to spot the signs of autism, according to a new report. The study, from the National Audit Office (NAO), also found that around half of the estimated 400,000 adults in England with autism may be falling through the gaps due to a lack of services. This is because they do not have a learning disability and services are mostly set up for people with illness, physical or learning disabilities, and mental health problems. A poll of 1,000 GPs for the report found 80% thought they needed additional guidance and training to identify and manage those with autism more effectively. Many did not know where to refer people with autism due to a lack of specific services. The study said: "In our survey of GPs, 64% told us that they referred adults with suspected high-functioning autism to adult mental health services, and 19% to learning disability services. "(A total of) 12% were not sure where they should refer such patients, and only 10% reported that they would refer them to a specialised autism diagnostic service." The NAO found that most NHS organisations and local authorities do not know how many people with autism live in their area, something it said should change. It also called for specialist support services. The study - called Supporting People with Autism through Adulthood - said: "Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings." Tim Burr, spokesman for the NAO, added: "Greater awareness of the numbers of people with autism, as well as better understanding of autism amongst those providing health, social care, benefits, education and employment services, would lead to improved quality of life for those on the autistic spectrum." Mark Lever, chief executive of the National Autistic Society (NAS), said: "Neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. This is simply unacceptable." Truth. This.

[Lerxster]

Posted on Wed, Jun. 10, 2009

 

Study to track autistic children includes Phila.

 

By Don Sapatkin

Inquirer Staff Writer

 

In a bid to unravel the confounding mysteries of autism, researchers yesterday launched a comprehensive study to track families with an autistic child through another pregnancy, birth, and the following three years.

 

Hundreds of environmental factors - from diet to infection, pesticides and medications - will be examined for possible interplay with genetic makeup. Perhaps 100 children with autistic spectrum disorder will be born, researchers said, to the 1,200 women they hope to enroll at four study sites nationwide, including Philadelphia.

 

"These families know there is susceptibility, because they already have an affected child," said principal investigator Craig J. Newschaffer, a professor at the Drexel University School of Public Health, during a teleconference with reporters yesterday.

 

About one out of every 150 children is diagnosed with autism spectrum disorder, a group of neurological disorders that cause delays in language development and impairment in the ability to relate to others. For siblings of children with autism, the risk may be 10 times greater - one reason that genetics is believed to play a large role.

 

While diagnoses have increased dramatically in recent decades, it is unclear how much of that is due to increased public awareness and better testing.

 

Some parents believe that childhood vaccinations, which also have increased in recent years, could be a trigger. Medical research has found no solid basis for this idea, but vaccines are among the many environmental factors that will be examined in the new study. The effort is unusual because "we are collecting the information in real time," said Lisa A. Croen, an epidemiologist with the Kaiser Permanente Division of Research in Northern California, which is part of the study. So-called prospective research is considered more accurate than medical studies that enroll people after a diagnosis and ask them to look back.

 

Daureena Williams, 26, has two sons - a 2-year-old with autism and a 1-year-old without - and has told investigators that she wants to be part of the study if she gets pregnant again. "I just want to know where autism comes from," she said last night from her West Philadelphia home. Anthony Shawn Williams Jr. was born in August 2006. While something seemed wrong within weeks, at 10 months "he started talking, saying 'Mommy' and 'Daddy,' " she said. Then he had the first of two seizures, and he was later diagnosed with autism. Although he has learned to recite the letters of his name, Williams said, he waves his fingers and arms in a pattern associated with autism, and his communication is no longer spontaneous. "He would never say, 'Mama, juice!' " she said.

 

The Early Autism Risk Longitudinal Investigation (EARLI) will include "multiple encounters with mom" during pregnancy, Newschaffer said, to get blood and urine samples (for DNA and other analyses) and updates on detailed diaries the women will be asked to keep about their health and environmental exposures.

 

Other data will be collected from the father and from siblings who have autism spectrum disorder. Stool and other samples will be taken from the baby at delivery, followed by examinations at 6, 12, 18, 24, and 36 months.

 

Researchers will follow a broad range of developmental and cognitive measures to pinpoint the timing of any symptoms that might hint at developmental delays, said Rebecca Landa, director of the Kennedy Krieger Institute's Center for Autism and Related Disorders in Baltimore, which is participating in the study there along with Johns Hopkins University.

 

Newschaffer, an autism expert who came to Drexel from Hopkins three years ago, said researches would "combine environmental data with the genetic data, because very likely there are genetic susceptibility factors."

 

Besides Philadelphia and Baltimore, there are two study sites in Northern California, one of them at the University of California, Davis. The study is funded with $14 million from the National Institutes of Health and $2.5 million from Autism Speaks, an advocacy group. The local portion of the study, which aims to enroll 300 women who are no more than 20 weeks pregnant and reside in Southeastern Pennsylvania, will be led by Drexel and by the Center for Autism Research, a collaboration between Children's Hospital of Philadelphia and the University of Pennsylvania.

 

Children's Hospital two months ago became the seventh center to participate in a huge national examination of how genes and the environment interact to affect children's health. The National Children's Study, which locally is limited so far to residents of Montgomery County, is expected to follow as many as 100,000 children from before birth until age 21.

 

That study is not specifically aimed at autism, but early findings, once they become available, could help autism researchers identify other environmental targets.

 

Children who develop autism in the NCS study, for example, might not have siblings with the disorder. The EARLI researchers are looking only at families that already have a diagnosed child because, among other things, finding more autism will also offer more opportunity to tease out environmental triggers.

 

"By studying families that have this enriched risk, there are some advantages to finding some environmental risk factors," said Newschaffer, and the findings "may be generalizable to the general population."

 

In addition to identifying how environmental exposures during pregnancy and early life might play a role in autism, and how they might interact with genetic factors, his study will also look for possible biological markers (measurable in blood or urine, for example) and behavioral changes that might predict development of autism spectrum disorder.

 

http://www.philly.com/philly/health_and_sc...html?page=1&c=y

 

[GhostGirl]

http://asortoflifewithautism.blogspot.com/...d-and-fury.html

 

Whew...

[Inthend]

QUOTE (GhostGirl @ Jun 12 2009, 10:42 PM)

http://asortoflifewithautism.blogspot.com/...d-and-fury.html Whew...

Hey GG,

 

Does Stephen understand the concept of the headphones?

Does he know how to plug and unplug them?

 

 

[GhostGirl]

QUOTE (Inthend @ Jul 26 2009, 02:28 PM)

QUOTE (GhostGirl @ Jun 12 2009, 10:42 PM) http://asortoflifewithautism.blogspot.com/...d-and-fury.html Whew... Hey GG,   Does Stephen understand the concept of the headphones? Does he know how to plug and unplug them? Yes, he does.

[Inthend]

QUOTE (GhostGirl @ Jul 27 2009, 10:19 AM)

QUOTE (Inthend @ Jul 26 2009, 02:28 PM) QUOTE (GhostGirl @ Jun 12 2009, 10:42 PM) http://asortoflifewithautism.blogspot.com/...d-and-fury.html Whew... Hey GG,   Does Stephen understand the concept of the headphones? Does he know how to plug and unplug them? Yes, he does. And he never pointed to the h.phones or shook them? He just said 'box'?

[GhostGirl]

QUOTE (Inthend @ Jul 27 2009, 08:18 PM)

QUOTE (GhostGirl @ Jul 27 2009, 10:19 AM) QUOTE (Inthend @ Jul 26 2009, 02:28 PM) QUOTE (GhostGirl @ Jun 12 2009, 10:42 PM) http://asortoflifewithautism.blogspot.com/...d-and-fury.html Whew... Hey GG,   Does Stephen understand the concept of the headphones? Does he know how to plug and unplug them? Yes, he does. And he never pointed to the h.phones or shook them? He just said 'box'? The story as written in the blog is exactly what happened. No, he never pointed to or indicated the headphones.   This kind of thing is what makes it hard for people to understand how complex some kids with autism can be - his brain KNOWS the sound isn't coming out, but he can't make the connection to TELL someone.

[Mara]

QUOTE (GhostGirl @ Jul 28 2009, 11:23 AM)

QUOTE (Inthend @ Jul 27 2009, 08:18 PM) QUOTE (GhostGirl @ Jul 27 2009, 10:19 AM) QUOTE (Inthend @ Jul 26 2009, 02:28 PM) QUOTE (GhostGirl @ Jun 12 2009, 10:42 PM) http://asortoflifewithautism.blogspot.com/...d-and-fury.html Whew... Hey GG,   Does Stephen understand the concept of the headphones? Does he know how to plug and unplug them? Yes, he does. And he never pointed to the h.phones or shook them? He just said 'box'? The story as written in the blog is exactly what happened. No, he never pointed to or indicated the headphones.   This kind of thing is what makes it hard for people to understand how complex some kids with autism can be - his brain KNOWS the sound isn't coming out, but he can't make the connection to TELL someone. Add to that it seems as if he knows WHY the sound isn't coming out - it's something to do with the headphones, which are in a box. . .

[Inthend]

QUOTE (GhostGirl @ Jul 28 2009, 10:23 AM)

QUOTE (Inthend @ Jul 27 2009, 08:18 PM) QUOTE (GhostGirl @ Jul 27 2009, 10:19 AM) QUOTE (Inthend @ Jul 26 2009, 02:28 PM) QUOTE (GhostGirl @ Jun 12 2009, 10:42 PM) http://asortoflifewithautism.blogspot.com/...d-and-fury.html Whew... Hey GG,   Does Stephen understand the concept of the headphones? Does he know how to plug and unplug them? Yes, he does. And he never pointed to the h.phones or shook them? He just said 'box'? The story as written in the blog is exactly what happened. No, he never pointed to or indicated the headphones.   This kind of thing is what makes it hard for people to understand how complex some kids with autism can be - his brain KNOWS the sound isn't coming out, but he can't make the connection to TELL someone. Thk you for making that clear.   I find it interesting that he concentrated on the solution, instead of what was broke.   I know it's it's hard GG, tho I know so little. Things will reveal themselves in time. I must believe that.   I enjoy your blog; some of your writing is more than very good.