When Autistic Children Are Children No More

Three local families confront the looming social crisis.

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Lunchtime at Our Place
 

The peas must be sorted. On a recent Friday morning, several 20-something volunteers buzz around a North Shore basement that houses a food pantry for the needy. Pouya Bagherian, an outgoing young man who is prone to mistakenly throwing valuables into the trash, goes through bags of donations. Jason Kaplan, a quiet type who is most comfortable plugged into his iPod, checks each can of peas to make sure it has no puncture marks. And Frank Craven, who is slight and wears thick-rimmed glasses, organizes the cans on a shelf so that the earliest expiration dates are in front.

These tasks require an enthusiasm for repetition that many people would find mind numbing. Not these three. Bagherian and Kaplan, both 26, are autistic; Craven, also 26, has a rare autism-like condition called Lowe syndrome. Coming here lets them build real-world skills such as organization and teamwork, plus earn the satisfaction of a job well done. Equally important, it gives them a reason to get up in the morning.


Jane Gallery and son Frank Craven at Wilmette’s Our Place program, which she founded

Many autistic adults have a hard time finding their place in the world. Less than half enroll in higher education or find work. (According to the Social Security Administration, only about 6 percent of adults with autism work full-time.) Many lack the skills to live alone. Those who cannot work generally qualify for monthly Social Security disability payments, which are too low to cover vocational coaches, therapeutic day programs, or other interventions that may help an autistic person reach a modicum of self-sufficiency. Meanwhile, the federal government does not require school systems to provide special education for students older than 18 (most states, including Illinois, have extended the requirement through age 21). “If you have a developmental disability like Frank, when you turn 22, you disappear,” says Craven’s mother, Jane Gallery, a 61-year-old Winnetka resident. “You fall off a cliff.”

Despite the countless news reports about the meteoric rise of autism-spectrum diagnoses (1 in 88 American children today vs. 1 in 150 in 2000) and the myriad books and websites about raising youngsters who have this developmental disorder, there is little discussion of or planning for what those kids are to do when they are no longer kids. An estimated 300,000 of them are expected to hit adulthood in the next decade (see “A Looming Tsunami”). Their fate is an increasingly urgent social problem, especially in Illinois, where the state budget is under immense pressure. “I’m very concerned,” says Kevin Casey, appointed by Governor Quinn in 2011 to overhaul the state’s Division of Developmental Disabilities. “There are not enough services for everyone. If we don’t get the pension crisis solved, it’s going to get worse before it gets better.”

Frank Craven’s postteen experience illustrates the problem. After finishing high school at New Trier in 2005, where he took a mix of regular and individualized classes, he began attending a publicly funded life-skills and job preparation program run by a consortium of North Shore school systems. Four years later, when his 22nd birthday arrived, he got a Friday afternoon sendoff party with pizza and cupcakes. And then he went home. That next Monday was what parents sometimes refer to as as the Day the Bus Does Not Come.

His mother, Gallery, the former owner of a food store and catering company, and father, Buz Craven, a corporate tax attorney, spent the months leading up to their son’s birthday combing Chicago’s North Side and North Shore. Their goal: find a day program that would (a) get their son off the couch and keep him happy and engaged and (b) meet his physical needs, such as insulin monitoring. (Frank’s condition affects not only cognitive functioning but also metabolism, muscle development, and vision.)

The couple found very few programs that met the first requirement and none that met both. One reason for the scarcity is that “research hasn’t focused on the needs of these adults, and it hasn’t focused on interventions [for them],” says Jennifer Gorski, a professor at the University of Illinois at Chicago who runs a local training center for the state-funded Autism Program of Illinois. Many existing day programs for autistic adults, parents charge, amount to little more than warehouses.

Afraid that Frank would languish in front of the television, gain weight, and grow more depressed by the day, Gallery finally threw up her hands and did the only thing she could think of. She started her own program. Called Our Place, it provides a range of constructive activities—such as organizing that food pantry—five days a week for some 50 adults with autism and other developmental disabilities.

Turns out that Gallery is in the vanguard of a pioneering group of parents and grandparents. Frustrated by the current options and more than a little worried about the future of their loved ones, they’re rolling up their sleeves and creating their own solutions. For example, Forest Park resident Debra Vines, a former hairstylist, is focused on building a community that will help get autistic adults out of hiding; retired CEO Terry Kline recently started a west suburban version of Our Place.

While they have a tough road ahead, says Katy Neas, a Washington, D.C.-based disability rights lobbyist for the charity Easter Seals, it is people like these who will ultimately upend the current system of care for developmentally disabled adults. “It is because of them that we are even as far along as a country as we are,” Neas says. “The dedication of these families to each other has made a world of difference.”

* * *

Photography: Chris Lake

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1 year ago
Posted by amdachel

We need to ask what’s really happening here. Why is there is huge need for services for a disorder that was almost unheard of 25 years ago?

The official autism rate is one in every 88 children, one in every 54 boys.

Experts tell us that 80 percent of Americans with autism are under the age of 18. That simple fact should scare us all.

Imagine the future as a generation of children with autism ages out of the school system with nowhere to go. It’ll be the taxpayers who will be responsible for their support and care.

Anne Dachel, Media editor: Age of Autism.

1 year ago
Posted by amdachel

Please look at this short PSA https://www.youtube.com/watch?v=3yL4BQbu48o

by Natalie Palumbo of Lexington, SC. She talks about her brother, a young adult with autism.

Anne Dachel, Media editor: Age of Autism.

1 year ago
Posted by amdachel

"Despite the countless news reports about the meteoric rise of autism-spectrum diagnoses (1 in 88 American children today vs. 1 in 150 in 2000)..."

Actually, it's much worse.

In the 1970s, the autism rate was one in every 10,000 kids and almost no one knew anyone with autism. That changed when the definition was broadened in 1994 to include other behaviors doctors were seeing in children. At that point the numbers exploded.

1995 1:500

2001 1:250

2004 1:166

2007 1:150

2009 1:110

2012 1:88

Some people claim that all the autism is the result of better diagnosing of a disorder that's always been around. If that were true, the rate would have leveled out between 1995 and 2000, after the definition was changed in 1994. That hasn't happened.

The autism rate is based on studies of eight year olds, not eighty year olds. No one has ever been able to show us a comparable rate among adults. And that simple fact should be scaring us all.

Anne Dachel, Media editor: Age of Autism

1 year ago
Posted by joejoe

The U.S. has let children with autism down to say the least, they seemed disinterested in finding the cause after thousands of parents pointed to regression after vaccination, they go ahead and spend billions on genetic research, and still continue to deny any link to this moment, meanwhile the numbers continue to skyrocket,the kangaroo court continues to pay out for vaccine induced autism, even though they try to deny every case at any cost. Their fake genetic epidemic which is not possible by the way is still getting the bulk of the research, with a few pennies going to environmental studies that show us its older fathers, obese mothers, living near a highway, basically just more insults, while showing their ignorance on the matter.Pathetic, then would be the best way to describe their effort when speaking of the autism epidemic!

1 year ago
Posted by Faithful NeuroDiversity

Autism is not caused by vaccines. Doing a simple search for research support so would bring a person to just one study led by a British doctor named Andrew Wakefield. No other studies have replicated these results. By January 2011, Dr. Wakefield's study was discredited by the British Medical Journal and his licence was revoked in the United Kingdom for medical fraud: http://www.bmj.com/content/342/bmj.c7452

There ARE studies looking at autism prevalence rate in adults in both the USA and UK- and guess what- they reflect the current prevalence rate of 1% of the population:
http://www.ic.nhs.uk/article/1733/New-study-estimates-autism-prevalence-among-adults-with-learning-disability
http://www.guardian.co.uk/society/2009/sep/22/autism-rate-mmr-vaccine
http://archpsyc.jamanetwork.com/article.aspx?articleid=211276


Additionally, a 2012 global rate of autism study shows a prevalence rate average of 62 in 10,000: http://onlinelibrary.wiley.com/doi/10.1002/aur.239/pdf

Fear mongering will not help autistic children, and have caused much stigmatization of autistic adults, creating empowering and accepting environments is a much more useful way to make the world a better place for everyone...

1 year ago
Posted by LifeLover12

Wow! Great article. The statistics really are scary :( I wonder if adults with ASD want love and stuff? I came across this kid's video but I don't know if I buy it.

http://www.youtube.com/watch?v=DCtTNUKSjw0&feature=youtu.be

I dunno.

1 year ago
Posted by bepatienz

Imagine how scary it would be if amdachel considered these facts: Until the early 1990s, bipolar disorder was very rarely diagnosed in children, but currently about one third of all children and adolescents discharged from child psychiatric hospitals are diagnosed as bipolar; outpatient office visits for children with bipolar disorder increased 40-fold from 1995 to 2003; and Harvard child psychiatrist Dr. Joseph Biederman stated, “Juvenile bipolar disorder is a serious illness that is estimated to affect approximately 1 percent to 4 percent of children.”

Of course, although it seems that the percentage of children who have a problem that could be termed bipolar disorder has remained constant--and only the label has changed--amdachel could have a field day with that information: if the apparent increase in the prevalence of childhood bipolar disorder is not related to increased consumption of organic foods, it must be correlated with big Agriculture's promotion of genetically-modified crops--or, more likely in amdachel's view, it's da vaccines.

amdachel might wish to comment on why the diagnosis of "specific learning disorder" among California school children fell as the diagnosis of ASD climbed, or why among kids in California simple diagnostic accretion for only one comorbid condition (simply _adding_ a diagnosis of ASD to children who would formerly have been labeled only as mentally impaired) accounted for one-fourth of the apparent increase in the prevalence of ASD that amdachel flogs as an epidemic. The percentage of adults in the community with ASD in the UK is similar to the percentage of children in the US with ASD--and that, of course, does _not_ include those more severely impaired adults who would have been, as was common in the recent past, institutionalized.

1 year ago
Posted by cycle3man

1i Treatment of Autism Scams Have Taken On A life of Their Own
No one other than then families affected by damaged children have an interest in finding the cause or a cure for those children already damaged, i.e., poisoned to be autistic.
I tell ya’ why I make this statement. I have been involved and engaged actively with the autism community for the last 18 years. My grandson born 20 years ago yesterday, received all vaccines according to the FDA recommended protocol, made all developmental benchmarks up until 18 months of age at which time he received the MMR jab and within a day or two slipped away from being a normal child to an Autistic. At that time there was little known about the mystery of either the cause or the cure. There was little help from the so called professionals. The most support a family could depend upon was parents banding together to share their experiences and experimentation. Well, from my vantage point little has changed regarding determination of the cause or finding a cure. The professionals, the FDA< CDC< IOM< and all full alphabet soup of tasked government agencies, along with the vaccine companies, the coal burning power plants, those screwing up our food chain, and I must not forget our majestic Medical doctors are all in the denial mode while they are financially prospering with the status quo. A massive set of cottage industries has sprung up bilking these suffering parents and damaged children, taking their hard to come by money with bogus promises of help.
The number of people making a living of this epidemic has reached a critical mass and has taken on a life of its own. Organizations representing the various supposed disciplines are and have been banding together and exerting influence to keep things as they are because they now earn their living off this tragedy.
We are nearing the point where the affected families will have to fund and fund raise to underwrite the research to uncover what is damaging these children and to find techniques and protocols for curing these children and adults that are already damaged.
Cycle3man
Posted by: Paul S |

1 year ago
Posted by cycle3man

1i Treatment of Autism Scams Have Taken On A life of Their Own
No one other than then families affected by damaged children have an interest in finding the cause or a cure for those children already damaged, i.e., poisoned to be autistic.
I tell ya’ why I make this statement. I have been involved and engaged actively with the autism community for the last 18 years. My grandson born 20 years ago yesterday, received all vaccines according to the FDA recommended protocol, made all developmental benchmarks up until 18 months of age at which time he received the MMR jab and within a day or two slipped away from being a normal child to an Autistic. At that time there was little known about the mystery of either the cause or the cure. There was little help from the so called professionals. The most support a family could depend upon was parents banding together to share their experiences and experimentation. Well, from my vantage point little has changed regarding determination of the cause or finding a cure. The professionals, the FDA< CDC< IOM< and all full alphabet soup of tasked government agencies, along with the vaccine companies, the coal burning power plants, those screwing up our food chain, and I must not forget our majestic Medical doctors are all in the denial mode while they are financially prospering with the status quo. A massive set of cottage industries has sprung up bilking these suffering parents and damaged children, taking their hard to come by money with bogus promises of help.
The number of people making a living of this epidemic has reached a critical mass and has taken on a life of its own. Organizations representing the various supposed disciplines are and have been banding together and exerting influence to keep things as they are because they now earn their living off this tragedy.
We are nearing the point where the affected families will have to fund and fund raise to underwrite the research to uncover what is damaging these children and to find techniques and protocols for curing these children and adults that are already damaged.
Cycle3man
Posted by: Paul S |

1 year ago
Posted by cycle3man

@ FAITHFUL NEURODIVERSITY
You Wish!!! Vaccines may be one of many environmental causes. But, for sure injecting mercury and aluminium into our children can't bwe doing them any good! Apparently, you have a very sketchy knowledge of the Wakefield because a colleague that worked with Dr Wakefield was cleared of all charges. It's only a matter of time for Wakefield to be cleared of the trumped up charges!!!!

Now I wonder if you have any 'conflict of interest" or special connection you failed to declare????

Paul Shapiro, no conflicts of interest or special connection other than being the grandfather to beautiful male child, who received the FDA recommended schedule of vaccinations and met all developmental benchmarks until he received the MMR jab at 18 months. His reaction was within hours and he has not been the same since. Within a few months he was diagnosed by a team of medical professionals a major west coast medical center!!!

1 year ago
Posted by lorigauthor

@lorigertzauthor

There is a wonderful article about Designing a Future for Your Special Needs Child here on Specialneeds.com (http://bit.ly/VllJAY)

Making decisions for others is never easy. In fact, it’s probably one of the hardest things one can do for someone, especially if that person is their child. When a family is coping with mental illness and intense special needs and a parent is charged with not only choosing interventions to support what a child’s life will look like as they grow but also what their adulthood will look like long after they themselves are deceased, the challenge becomes overwhelming.

1 year ago
Posted by Tired of being hijacked

As the mom of two autistic children and I am sick and tired of every autism discussion being hijacked by the anti-vaccine cranks. This article is about the challenges of ADULTS with autism and vaccines, which have consistently been disproven as a causal factor, have no role in the discussion. The dearth of options for a meaningful life is the focus. Please keep it there and AgeofAutism folks please go away.

1 year ago
Posted by downtowndad

I am a stay-at-home father of 2, one of whom is 6 and high functioning autistic.

One thing that the article doesn't suggest is that parents begin financial planning for their impending adult dependents.

Just as we would start a college fund, so should we start saving for our adult dependent. Yes, it's hard. But relying on the government for another branch of funding is not something that will happen overnight. It is something that will take a lot of planning.

The grassroots groups being started are a great start. The more of us that band together and have well-run organizations up-and-running, the easier it will be to see how funds will be efficiently used.

Thank you to everyone who is looking our for the future of my little boy. I will certainly meet many of you in the near future. We will work together to make a functional world for our little ones.

1 year ago
Posted by Sam Golden

This is a good article about a difficult problem faced by some parents and other relatives of autistic adult children. Where you get off tract is when you applaud the clsosing of state facilities for the intellectually disabled. Group homes, or homes of parents/siblings are okay for the mildly retarded or autistic who can live in group homes satisfactorily. But they are not adequate for the severely, profoundly, and multiply-handicapped folsa who require 24/7 care with all the necessary specialties on board, such as nursing care. Equip for Equality has done the very persons it purports to speak for a disservice. The people left in state homes are those that truly require a full-range of services. These cannot be provided in dinky four-person group homes. (If they were available in numbers to care for the population, which they are not in Illinois). Ending state institutions is a death warrant for these poor people. I hope you will correct your article to reflect that larger institutions are needed for the severely/profoundly disabled. And you should not lump together all persons with an intellectual disability, like organizations such as Equip for Equality do. As the Supreme Court ruled in the Olmstead case, some persons need institutional care. And the choices of the person and his/her loved ones must be taken into account. There is no "one size fits all". We know this because our daughter, Anne, was beautifully cared for in the Mount St. Joseph Home for the thirty years that she lived there. She was a lovely person, but severely limited and required full-time care from the wonderful sisters of St, Mary, who manage the institution. I don't understand why people can applaud the assisted living institutions that are mushroooming all over the place for elderly persons and reject the same kind of institution for the intellectually disabled. I hope you will correct the misapprehension that large facilities are per-se bad. As Sr. Rosemary has said, there are good and bad institutions of every size.

1 year ago
Posted by Sylvia Sanchez

My son is 22 years of age. Because he was high functioning and completed his requirement at the vocational highschool they graduated him at 19. The school had nothing to offer him in the way of a post transition program before college. I was told to let him try community college. Because of his severe reading impediments and auditory processing difficulties he could only handle one class a semester in culinary arts. He complete a cold food certification and is working toward a bake shop certificate. He works part time in a local high school cafeteria ( my husband was able to get that job for him.) There are no social net works for individuals like him and he suffers I believe from loneliness. Before the job he went to an occupational training center but because my husband and I are professionals we had to apply for guardianship for him so he would qualify for Division of vocational rehabilitation services, otherwise you get nothing.( not that they are that helpful) the choices are stocking cans and boxes at teh center or they might get you a part time job to janitorial work. My son had knife skills as a prep cook and had work part time in Cosi. I think that the employment agencies for the disabled should do more> There are disabled individuals who can do more and we should as a society respect them for their abilities and help them and give them a chance.

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