Rise in autistic adults worries caregivers
The Autism News | English
Marlon Barton, 26, was diagnosed with autism when he was about 2, at a time when the condition was considered unusual and doctors offered little help or hope to parents of the children who suffered from it.
By Cynthia Hubert | The Sacramento Bee
As a chubby, smiling baby boy, Marlon Barton delighted everyone around him. Now that he is a strapping young man who flaps his hands and makes odd noises, no one knows quite what to do with him.
Barton is 26 years old, 6 feet 2, 283 pounds and acutely autistic. He was diagnosed when the condition was considered unusual and when doctors offered little hope to parents of the children who suffered from it.
His mother, Pearlie Barton, cares for her son around-the-clock now in their south Sacramento home. “He scares people, even though he usually is not aggressive,” she said.
“Being large, African American and autistic does not work in his favor,” either socially or in programs designed to help people with disabilities, she said.
Autism, a neurodevelopmental disorder that affects language and social skills, was relatively rare when Barton was born. Since then, for reasons that are unclear, diagnoses have skyrocketed and the condition is surfacing in an estimated 1 in 150 children.
As a tidal wave of these youngsters moves toward adulthood with complex behavioral and medical problems, society is largely unprepared.
“We don’t have the programs. We don’t have the research,” said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. “We have this very large adult population of autistics coming along, and we don’t know how to deal with them. We just haven’t come to terms with it.”
But the futures of hundreds of thousands of autistic people in America cannot be ignored for long, said Hendren and others.
In California, regional centers will be serving more than 50,000 autistic people of all ages by the end of this year, according to the state Department of Developmental Services. If the trend continues, that number will grow to 70,000 by June 2012.
By 2013, according to the department, more than 4,000 teenagers with autism will reach adulthood, and by 2018 the agency will be serving more than 19,000 adults with the condition. Nationally, the number of autistic children expected to need extensive adult services by 2023 is about 380,000 people, and the bill for caring for them will be in the billions of dollars.
Care providers are just beginning to grapple with how to deal with the surge, even as governments slash social services to cope with budget deficits.
“The financial impact will be huge,” said Hendren. “Many, many people will be living impaired lives, and where are they going to go? Who will take care of them? The challenge will fall largely to family members. As those parents age, they are asking, ‘Who is going to take care of my autistic child after I am gone?’ “
It is a question that haunts Pearlie Barton, 58, and her friend Helen Richard, 78, who also has an adult autistic son.
“Right now, every time I leave Marlon out of my sight I’m taking a chance,” said Barton, recalling how once, when she looked away for a moment, her son wandered into a women’s restroom. “I have to watch him every minute. But I’m not going to be around forever.”
Research focuses on children
Some people with autism, including Ray Richard, can speak and care for themselves with limited supervision. Some are able to work, if employers are willing to adapt to their limited social skills. Others, like Marlon Barton, are entirely dependent on caretakers and family members. Day programs, job opportunities and housing options geared specifically toward adults with autism are limited.
“There’s really nothing out there to meet the needs of these guys, even guys who are as highly functional as Ray,” Richard said. Her son is 43 years old and has Asperger’s syndrome, a milder form of autism.
“Ray can type 40 words per minute,” Richard said. “He has a great vocabulary. He has a photographic memory, but I can’t get him a job because you can’t really teach socialization. It’s terrible.”
Life for her son might have been better, she said, had he had access to training programs when he was younger.
Hundreds of millions of dollars a year are now devoted to research around autism. But the vast majority of studies and treatment are focused on children, whose brains are still developing and who, with early intervention, have a good chance to develop speech, social, and vocational skills.
Source: http://www.sacbee.com/topstories/story/1983338.html
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Jody Isenberg Italiaander at 11:24am June 28
This is what keeps me awake at night…sigh.
Anyone with girls on the spectrum ? I need you !
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Sam Davis at 11:30am June 28
i have u can add me jody
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Tina Loughton at 11:36am June 28
this is truly worrying i have a daughter and a son on the spectrum.
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Becca Major at 11:37am June 28
I have a daughter on the spectrum, also.
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Jennifer Monnier Shanahan at 11:37am June 28
Extremely worrisome.
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Jody Isenberg Italiaander at 11:38am June 28
How do we respond to the open discussion above?
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Jennifer Monnier Shanahan at 11:40am June 28
It is a link so I guess the comments are the discussion….
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Erica Waldron Hawk at 11:40am June 28
My youngest daughter is on spectrum Jody – you can add me as well.
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Danielle OShaughnessy at 11:40am June 28
I have a daughter on the spectrum also, she will be 12 on Thursday. I worry about her all the time
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Tammy Burton at 11:47am June 28
My daughter was 3 when she was diagnosed with autism. She is 17 now. Yes, constantly worrying, never stops
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Tara-Kelly Andrews at 11:47am June 28
i have a daughter on the spectrum…and shes 5…6 in November
Bill Davis at 11:51am June 28
My new book “Autism Tomorrow – the complete guide to helping your child thrive in the real world” Has a very large section on adults on the spectrum & future/ financial planning- I also have a few chapters dedicated to Girls on the spectrum as well as puberty, hygiene & fitness. My son is going to be 16 & is diagnosed ASD. So this is something that… Read More I am currently living & I felt there wasnt enough information about living w/ older children/adults on the spectrum.
My book is available for pre-order at http://www.autismtomorrow.com
Hope this helps
Bill Davis
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Klarin Fausett at 11:53am June 28
Hey JOHN!!! HI! I was just getting ready to send this article to you! It is on the front page of our home paper Sacramento Bee. This lovely young man lives 10 minutes from me! I am going to try and contact her to see if I can volunteer to help her and her son! THIS ARTICLE IS HUGE for the awareness that we are going to have a HUGE population of … Read Moreyoung adults who have autism and we won’t be ready.. ESPECIALLY here in California where we have an epidemic and our state is almost Bankrupt. In the meantime, it is folks like PEARLE BARTON, the loving mother & caregiver of Marion who worries. She is 58. What would happen to him should something happen to her? This is the worry along with lack of adult services! I will attempt to contact her & I will let you know. So glad to see you again my dear friend and thanks for POSTING THIS ARTICLE!! XO KF
Curt Linderman Sr. at 12:07pm June 28
had they listened to our community years ago, they may have been able to do something about this, however, what should be worrying these people is that they STILL aren’t listening!
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Klarin Fausett at 12:22pm June 28
YES CURT!!!!! I could not agree more! Sure … the MIND institute was built… and Dr.Hendren IS speaking out… BUT… the MIND institute is for kids AND very hard to get into….. and VERY expensive…… California is in big trouble… especially with a Governor who has cut services and aid to all special needs areas of care……….. there will be a nation and world wide issue in the next 5 years. My son is almost 13 and he was at the beginnng of the huge BOOM in Autism…. 5 years from now comes 18….. 1 in 150 boys are ASD in Calif. …. I could not agree with you more Curt!
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Korey Rood-Behlmer at 12:26pm June 28
Jody you can add me! I have Aspergers…was diagnosed autistic as a child. I am married and have three beautiful children now.
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Jean Barkley at 1:10pm June 28
i have a group for parents of girls on the spectrum you are all welcome to add me and join group – my daughter is nearly 4
http://www.facebook.com/home.php#/group.php?gid=78231846218&ref=ts
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Andrew Jones at 1:10pm June 28
I have two Jody a Asperger’s 7 year old and a PDD 4 year old. I was diagnosed with ADD as a child, however, I’m fairly certain if I idid I was tested again I’d get the Aspy label.
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Kimber Lyn Rogelstad at 1:25pm June 28
!) And is figuring out public transportation so she can get to places on her own until she gets her license. We are worried about her too after graduation but we figure we just keep plugging away and work on as many life skills as we can and make sure she has available support. Hang in there and contact me any time!
I have a 17 year old that was a late diagnosis at 15–brought to the table at an IEP meeting at 13 but the teacher’s said they didn’t see any behaviours even though parents and school psychologist(who brought it as a possibility) did. This was after years of other diagnosis including ADHD and Obsitinate deficiance. Needless to say it has been an uphill battle that we are just now begining to see the light–she is going to graduate high school in 2010–YEAH!! She went to prom with her best friend(didn’t like any of the guys they hang with so just met some of their girlfriends there–why couldn’t we do that in high school
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Stephanie Tibbetts at 1:42pm June 28
I have a 15 yr old, diagnosed aspergers at 10, also a 7 yr old (autism) and a 5 yr old girl (aspergers),….yikes!…..I find my girl is a huge handfull now, can barely imagine when she is a teen, feel free to add me, she also has mood disorders (possible bi-polar) and we have her on meds, also still not toilet trained, wears diapers, and to top it off, she won’t go poop willingly, i am increasingly worried of how this will effect her self esteem going into school years. ~sigh ~ every day is a battle of some sort.