Professional Documents
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2000: Special Report - Children in Disorder
2000: Special Report - Children in Disorder
A
9
A
West
sections
130 pages
www.insidevc.com
SPECIAL REPORT
PART I OF III
ILDRENinDI
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RDER
Slain w to turn
I
Elizabeth Sa through the withdrawal. supposed to instead, she strangled, be in a muddy i
o coast
~ Ann Miller
taff writer In what investigators are call g odd circumstances, a Santa nez woman was found dead Sat ~day off the Oxnard coast a few ~iles from a sinking boat, author ies said. U.S. Coast Guard officials found ~e middle-aged woman at 1 p.m. oatin~ about 5 miles from shore nd 4 miles from a boat called the botsy that is registered to her nd. her husband, Petty Officer andy Needle said. The couple was last seen about p.m. Friday on the boat leaving anta Barbara Harbor. As of 10 ~m. Saturday, the husband was till missing, and the Coast Guard tas unsure whether anyone other mn the two had been on the boat. The couple was not identified ending notification of family embers. The Coast Guard received a II about 7 a.m. from a passing at reporting another vessel talc g on water about 9 mileg off aore near an oil platform, Needle aid. The witness said nobody was board the Tootsy, a~ 38-foot Dwer vessel that was listing adly and had between 2 and 3 tet of water inside, Needle said. I Coast Guard rescue crews from hannel Islands Harbor, Los An eles International Airport, ManDel Rey and Sacramento re onded to look for anyone who light have been on board. After discovering the dead oman, a Coast Guard helicopter ~w the body to Oxnard Airport, i~ere Ventura County Medical xaminers Office investigators +ok it for examination. They cre unable to locate relatives as 8p.m. The Tootsy was towed into bannel Islands Harbor after ws removed most of the water om the boat, Needle said. I Investigators were unsure why te woman was in the water. She as not wearing a life vest, Petty (ficer Francis Fitzpatrick said. The Coast Guard had received radio traffic from the Tootsy ,ice it left Santa Barbara, Fitz krick said. Usually when a boat takes on kter, the occupants notify the bast Guard and put on life vests. [Its very strange, he said. ~e dont know when the people ft the boat or why they left the Please see MYSTERY on A9
AIR SHOW~ P drawing neai COLUMN: A ~ Camarillo Sti OPINION: Ed call for doub DREAM HOMI takes a look
,>1
clock
Staffphoto by James Clover It
ove
~ 4
her autistic son, JF~ who is having a tantrum. He attends Las Posas School in Camarillo, and she says he has taught her that family and faith are the important things in life.
Fe 8 lx
hree-year-old Coby been getting the same diagnosis Dennis wiped off over the past decade, fueling an his mothers kiss unprecedented increase in autism es, crawled on the con cases. A disorder that was once crete until his toes were thought to strike one out of every bloody and couldnt sit 2,500 children is now estimated to still long enough to eat. affect one in every 500 to 1,000 in The sound of a lawnmow fants. er made him scream, In California, the growth has cover his ears and flee. been so staggering that legislators last year funded a $1 million study his home to his brothers school in to investigate the increase. In just Camarillo terrorized him. 11 years ending in 1998, the num His father, hoping he would ber of autistic people served grow out of it, excused his behav through the state Department of ior. Developmental Services went His mother cried. from 2,778 to 10,360 a 273 per And the boy with almost no lan cent increase. During the same guage grew more frustrated. period, Californias population in Finally Coby was diagnosed creased by 18 percent. with autism, an incurable and seri A year later, the DDS figure had ous brain disorder, and there was topped 12,150, an additional 17 nothing to do but deal with it. Or percent increase. as his father, Tom Dennis, put it: Autism has shot up even faster I cried a lot, prayed a lot and put on special-education rolls in Ven it up to God because I couldnt do tura County and the neighboring it myself. Las Virgenes schools, quadrupling Coby is one of hundreds of chil in six years to more than 300 stu dren in Ventura Count) thousands dents last April. By December it in California and tens of thousands in the United States who have Please see AUTISM on AG
I he kid looks
absolutely normal and he acts out in public and people tell you he just needs a smack across the behind.
Laura Valdez, advocate and mother of two autistic sons
Headle~ to be
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WILL TO SURVIVE
46 ~
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that since this :trend has persisted for 10 years, it will likely
continue. Ron Huff, psychologist who wrote the report for the state Department of Developmental Services documenting the California increase
STRESSFUL MOM JP Samuel cries he enters schoc His parents thin its because his regular teacher, was absent the before, wont b his preschool program.
understand whats
wrong with the
chile), it helps the kids get services and most nnpwfant of all, it
helps the kids
By Kathleen Wilson Staff writer Three-year-old JP Samuel is so disabled by autism that hes turned his familys life upside down. From morning to night, he has to be watched, diapered and fed tiny morsels of food like a baby. His parents keep the lights off in their Camarillo house and play Barney videos over and over to soothe him. Sometimes the only place that comforts him is the family van, so theyll sit with him there for two to three hours. People will look at you like, Just make him shut up, said his mother, Kris Samuel. I just want to scratch their eyes out. People tell me he really doesnt have autism. Theyll say, have you ever seen Rain Man? I hate that they ever made that movie. Hes one of the lucky ones. I hope JPs that lucky. As much as I hate it, I know I will take care of JP forever. His mother said there are no holidays at Grandmas house and no vacations because JP could not stand the change in routine. The family cant sit down and eat meals at the table together because he would throw the plates onto the floor. Flis 4-year-old sister, Madison, cant have a friend over to play because he would push her. Mom and Dad dont even have the privacy of sleeping alone in their bedroom because the brown-haired boy with the huge brown eyes and soft, babylike skin cant be left by himself. i-Ic might tear the screen off the second-story window in the bedroom that the three of them share. So his mother lies down with him at night, and he yips and yaps for hours before he finally nods off. He has a twin bed thats shaped like a cai; but he wont sleep in it. So Dad does. At least JPs sleeping more now Four hours a night, instead of three. Even such normal things as haircuts and trips to the dentist become extraordinary. His parents have to hold him down while they try to cut his thatch of brown hair: He undergoes general anesthesia for dental work. Day care is impossible, his mother said, because no one wants to take a child once they find out he has the A word. Caring for JP is so demanding that his parents work and take care of him in shifts. His father produces videos, for a living but has cut back his hours and is workmg at iught to free up time for JP lbs mother works during the day at a childrens shop she ownavi then takes over at n.ight. Husband and wife are cattily together except Sundays. .%. Still, they do not regret having him., 7i~.: I love him, said his fathei; Chris Samu.ei, Of course, who wouldnt take away the autism if they could? His mother said her autistic child has taught her whats important in life, namely family and faith. I feel honored that JP chose us. I feel honored that God for some reason thinks we can do this, she said. She noticed something was different about him right after he was born. He screamed like something was burning him, never cooed and wouldnt nurse. She brought home all kinds .of toys in the hopes that something would turn on the light. Nothing did. Samuel gave birth to him after a troubled pregnancy. She was hospitalized four times: twice for hemorrhaging and twice for kidney failure. Emergency-room doctors had recommended ending the pregnancy at one point because of her excessive loss of blood. Fler personal physician disagreed and she could see the fetus moving on an ultrasound test, so she said no. Even though she fears that JP will never be able to live on his own, she sticks by her decision. I would rather have this life with him than a life without him, she said. They have no health insurance for treatment at recogn.i.zed autism centers and have found behavioral management prescribed by a specialist to be too harsh. They take JP to publicly funded occupational therapy sessions in Ventura to improve his coordination, calm his overcharged senses and develop some language. He attends a preschool for autistic children at Las Posas School in Camarillo, hut mostly they tough it out on their own. Autism has changed their future, too. The couple does not
for the state Department of Developmental Services documenting the California increase
~ abeling is LcriticaL It helps the parents understand what.s wrong with the child, it helps the kids get services and most important of all, it helps the kids know why theyre different. Bi. freeman, director of the Autism Evaluation Clinic at UCLA
~s difficult, ~ its rar~ and you have to specialize in this area and see enough cases to knew whats going oh. There are only af.ew medical centers like UCLA that have a broad range of cases. Dr. Edward R. Ritre, autism specialist and professor emeritus at the UCLA School of Medicine
From morning to night, he has to be watched, diapered and fed tiny morsels of food like a baby. His parents keep the lights off in their Camarillo house and play Barney videos over and over to soothe him. Sometimes the only place that comforts him is the family van, so theyll sit with him there for two to three hours. People will look at you like, Just make him shut up, said his mothei; Kris Samuel. I just want to scratch their eyes out. People tell me he really doesnt have autism. Theyll say, have you ever seen Rain Man? I hate that they ever made that movie. Hes one of the lucky ones. I hope JPs that lucky As much as I hate it, I know I will take care of JP foreven His mother said there are no holidays at Grandmas house and no vacations because JP could not stand the change in routine. The family cant sit down and eat meals at the table together because he would throw the plates onto the floor. His 4-year-old sistbi; Madison, cant have a friend over to play because he would push het: Mom and Dad dont even have the privacy of sleeping alone in their bedroom because the brown-haired boy with the huge brown eyes and soft, babylike skin cant be left by himself. I-Ic might tear the screen off the second-story window in the bedroom that the three of them share. So his mother lies down with him at night~ and he yips and yaps for hours before he finally nods off. He has a twin bed thats shaped like a cai; but he wont sleep in it. So Dad does. At least JPs sleeping more now Four hours a night, instead of three. Even such normal things as haircuts and trips to the dentist become extraordinary. 1-us parents have to hold him down while they try to cut his thatch of brown hair. He undergoes general anesthesia for dental work. Day care is impossible, his mother said, because no one wants to take a child once they find out he has the A word. Caring for JP is so demanding that his parents work and take care of him in shifts. His father produces videos, for a living but has cut hack his hours and is working at night to free up time for JP His mother works during the day at a childrens shop she ownA~ then takes over at night. Husband and We are rarely together except Sundays Still they do not regret having him 1 love him, said his tithe~ Chris Samuel, Of course, who wouldnt take away the autism if they could? His mother said her autistic child has taught her whats important in life, namely family and faith. I feel honored that JP chose us. I feel honored that God for some reason thinks we can do this, she said. She noticed something was different about him right after he was born. He screamed like something was burmng him, never cooed and wouldnt nurse. She brought home all kinds of toys in the hopes that something would turn on the light. Nothing did. Samuel gave birth to him after a troubled pregnancy She was hospitalized four times: twice for hemorrhaging and twice for kidney failure. Emergency-room doctors had recommended ending the pregnancy at one point because of her excessive loss of blood. Her personal physician disagreed and she could see the fetus moving on an ultrasound test, so she said no. Even though she fears that JP will never be able to live on his own, she sticks by her decision. I would rather have this life with him than a life without him, she said. They have no health insurance for treatment at recognized autism centers and have found behavioral management prescribed by a specialist to be too harsh. They take JP to publicly funded occupational therapy sessions in Ventura to improve his coordination, calm his overcharged senses and develop some language. He attends a preschool for autistic children at Las Posas School in Camarillo, but mostly they tough it out on their own. Autism has changed their future, too. The couple does not dare have another child for fear he or she would have autism. I just wanted to work, go home and have a family and it fell to pieces, Kris Samuel said. People take so much for granted. You cant come home and relax and sit and watch Ally McBeal. I cant fix it because I dont know where to go, what to do.
HIGH MOMENT: JP Samuel, 3, of Camarillo builds a block tower during h Caring for him is so demanding that his parents care for him in shifts. 1 shifts so one can always be With JR
Many advocates and families, director of special services for the the skeptics. Were calling milder develop however, believe the numbers are Pleasant Valley School District in Camarillo. These kids were not mental disorders autism, and grossly underestimated because parents dont want, their children. ~had soared to 408 youngsters, around. Thats whats kind of sometimes were doing it to get labeled with the A word. Its a kids services, Spiker said of the scary many of them from suburbs But specialists in the disorder trend. Theres no evidenceto my stigma. that has haunted the disor known for half-million-dollar say the picture is muddied be knowledge that classic, more se der and may have led to underhomes. diagnosis in the past As little as It is not just a California phe cause of factors that have noth vere autism is on the rise. State psychologist Ron Fluff 10 years ago, doctors hated to tell nome non. Schools and doctors are ing to do with autism. They say parents a child had. autism be seeing the increase in every re many of the people diagnosing said the California figures are cause it was cciitsiclered untreat gion of the country. The number of autism in California are unquali highly suspect. They may, he said, able. autistic students has doubled, for fied, that the true occurrence is be swollen by misdiagnosis and It meant we basically had been example, in New York and Michi questionable because of dis clerical errors because the state forced to give parents an. emotion agreement over mild cases, and network of 21 regional centers has gan. f-.11.-~,,, t!-.~ l-.nrnmn r,uprnln with nennle al and communications death sen Govt inued from Al
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AUTISM: Numbers increase; some attribute it to misdiagnosis or an attempt mentalget fun to illness. Byrd tory of
to report some preliminary r of the state study this mont has thus far found no genel environmental explanation fc explosion. He said redefinitio better identification will pro account for a large part of it. He also expects to find li children who were diagnos autistic so they would quali: state-paid services even ti they dont fully meet the cri While one psychologist calle medical fraud, Byrd said
FC
The Star
cHILDREN in DISORDER
VOLMMAR ~~~ts really not ~ at all clear to my ,nind. I think we just really dont know. Dr. fled H. Volkmai
Yale University psychiatrist who coordinated the international field study leading to the current definition of autism
~~~have seen ~people calling things autistic features that are not autistic features. There are people out there who are missing the boat, who are not looking at the full definition.
Steve Graft, psychologist who reviews autism cases for state services
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not: he used, was one of the parents who turned to her. Mices son knocked out six windows in their house, threw chairs in his preschool class and was the toddller from helL lies 8 no~ talking and last year was the most advanced reader in his firstgrade class. But Mice remembers the dark days when she felt like putting a big A on her forehead. The autism society was a lifeline because you feel like youre drowning, she said. Christophers father, Larry Valdez, made his own peace. He worked less at the printing business he owns and spent more time with his family. He volunteered at school to help Christopher become involved in playground games. With his wife, he set up a trust so their inheritance can pass to their children untaxed. The two support research on autism and along with their sons have donated their blood for genetic studies~. But theyre not waiting for a cure. I have to deal with living for today, Laura Valdez said. They dont know yet what the future holds for Christopher, who is considered to be high-functioning, a term that means his intelligence is at or near normal. ilut Christopher has
psychiatrist who coordinated the international field study leading to the current definition of autism fl~have seen ~people calling things autistic features that are not autistic features. There are people out there who are mIssing the boat, who are not looking at the full definition.
~~Weve [ Wlteanw4a frreat deal more frbout our ability. ~ identify same of fre problenis frputa name Jo. There are some about ~ but i~ .1 undentand it, ~e have became nore proficient at (iagnosing. the boblem. rather ~an less.
HARD AT W0RK
Chnstopher
Valdez
concentrates on his studies, A classroom aide who sits next to him helps him
understand the schoolwork.
Ha~.Betb
rot be used, was ne of the parents who turned to her. Mices son knocked out six windows in their house, threw chairs in his preschool class and was the toddler from hell. Hes 8 now, talking and last year was the most advanced reader in his firstgrade class. But Alice remenibers the dark days when she felt like putting a big A on her forehead. The autism society was a lifeline because you feel like youre drowning, she said. Christophers father, Larry Valdez, made his own peace. He worked less at the printing business he owns and spent more time with his family. Fle volunteered at school to help Christopher become involved in playground games. With his wife, he set up a trust so their inheritance can pass to their children untaxed. The two support research on autism and along with their sons have donated their blood for genetic studies. But theyre not waiting for a cure. I have to deal with living for today, Laura Valdez said. They dont know yet what the future holds for Christopher, who is considered to be high-functioning, a term that means his intelligence is at or near normal. But Christopher has his own dreams: He wants to go to college, be a policeman and marry his friend, Caroline, who also has autism. Shes my dream girl, he said.
DGH COSTS: Families, educators find autism eats time, energy and money
~ontinuedfrom A6
igures released so fan They are not scientifically in erpretable, he said, because the tandards for diagnosis changed ver the period of the survey. Fombonne, who is affiliated rith the Institute of Psychiatry in ~ondon, found that autism occurs seven to eight of every 10,000 frths based on studies of the past 0 years. Thats double the esti kites of the 1960s. But its diffi pit to interpret whether the num era have truly increased because esearch standards varied from tudy to study. Even within the same country bey are using different concept.s, i.fferent instruments, different bethods, lie said.
1.. r.~..,L,.%..,., ..~n
showed absolutely no change in the rate when the definition was held constant. Costly disorder What is certain is that autism can be both devastating and baf fling, causing some children to pull their hair to the point of bald ness or flip a light switch for hours. About half of these chilcfren never develop full-blown language and few ever live on their own. Even comparatively mild cases such as Cobys can turn family life inside out. He needed occupational thera py at $85 an hour, special educa tion and a daily schedule. The fam ilys health insurance would not cover autism, so they paid close to $l.,500 for tre.atm.en.t, a fraction of the $20,000 and more other par-
Aufism numbers
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the refrigerator so Coby knows whats hes doing all day long, from cleaning his room to going to bed at night. They l.ightiy stroke his arms with a plastic brush, a technique to calm his nervous system. They put up a tent in his
routine and a schedule, his father said. Otherwise, I dont know if he could function. I dont know to what level he could function. The couple found that autism eats time, energy and money. Just
teract with her son. I was ob sessed with it, she said. Autism is costly to the taxpay ers as well, with estimates show ing that only 5 percent to 10 per cent of adults with the disorder live independently. Epidemiologist Sandy A. Geschwind priced the expense at more than $13 billion annually in the United States in the mid-1990s, including th.e costs of lost productivity, some medical expenses and residential care. The figure did not include the sig nificant out-of-pocket costs borne by families and special education. Last year, the state Depart. ment of Developmental Services spent $95.3 million on about 9,500 clients with autism. The bill has doubled in the past five years as the number of autism clients has doubled.
I-
~~The range of
~ autism is so broacL There ;nav be kids who are misdiagnosed, but others who are missed. Its not that youd be lookingfor the Rain Man. Cindy Osei spokeswoman for Zero to Three, a nonprofit organization promoting healthy development of infants and toddlers
CHILDREN in DISORDER
SPIKER
Staffphoto 1~y James Glover II WHAT NOW? A schedule, complete with pictures, helps Coby Dennis, 5, keep his life organized. He and his mother, Carolyn, review one of the items on his daily list of things to do.
law required school districts to educate disabled children in the least restrictive setting, meaning in local schools when possible. Psychiatrists defined autism as a separate disorder and began training other professionals to recognize it. California established a network of regional centcrsprovidhig.~suppo4~..~.. fn,in legal athice ~ treatment for people with autism and other serious disabilities. Research funding began opening up in the 1990s after autism was named as an orphan disease by a commission established by President Reagan. Ritvo said Rain Man helped promote research, as did new books on the disorder Prior to that it was just ignored, he said. Now there are many centers all over the world working on it. Its totally out of the closet.
..
AUTISM ~N ThE MOVIES: Tom Cruise, left showed one aspect of autism albeit Rain Man. Very few people with autis Hoffmans character was.
psychologist
Staffphoto ky Jan WHAT NOW? A schedule, complete with pictures, helps Coby Dennis, 5, keep his life organized. He and his mother, Carolyn, review one
FELDMAN
4~ a &Dtre
VIa i the labeJfilT with milder
problems. Thats not to say we have more mild kids. Dr. Gary
kldman, geneticist
and flap their hands. They may press from their parents for a prolonged their eyeballs, stare at the edge of a period of psychotherapy. The table for hours, or open and close a devastated mothers were often door hundreds of times, placed in psychotherapy, too. Some scream for hours. Some try The Austrian-born Bettelheim to mutilate themselves. Some seem was no stranger to fear. He had been insensitive to pain and i~oll~bang tlWr imnn~~n~wA at Ti~acbau and heads until they h4Sihbps4n~ k~\ E&iliflhlFcoriceutration camps, 4 ~ flj~fl~Wtfl~ht!1tt~? buying his underwear at Kmart. might spend hours tearing paper to survivors. But his theory that He had ne~sei been kissed. tiny bits, shakmg a string, or flipping autistic children were the victims of The middle-aged autistic savant a light switch, poor parents did not last. exasperated his money-driven It is a disorder or more likely a It was debunked in the late 1960s brother, played by Tom Cruise in the group of disorders that has baffled by Dr. Bernard Rjinland, a parent and 1988 Oscar-winnmg movie, scientists for decades. Partly because founder of the Autism Society of You cant tell me that youre not it varies so much from one person to America. Rimland argued that autism in there somewhere, Cruise yelled, the next, and partly because it affects was the product of a maldeveloped It is this glimpse of autism in the so many human abilities, from brain, which has been shown to be 1988 Oscar-winning picture that is all thought to communication to true. many people know about the emotion. Since then, treatment has focused disorder. The reality, though, is that Although autism has probably on behavior training, special fewer than 10 peicent of autistic existed for centuries, psychiatrist education and various speech and people are sannts, individuals with Leo Kanner first identified the occupational therapies, although splinters of giftedness in their disorder in 1943, based on 11 psychotherapy is still used in some disordered brains, children he saw at the Johns Hopkins parts of Europe. The rest covet an enormous range Childrens Psychiatric Clinic. About Psychologists say the lives of from the few who have earned the same time, Hans Asperger of the even the most severely affected have doctoral degrees to those requiring University Pediatric Clnuc in Vienna dramatically improved over the last 24-hour care in institutions, and a prepared his doctoral thesis on the 20 years. whole spectrum in between who live same type of child. As late as the 1970s, most parents in group homes, with their parents London scientist Uta Frith wrote placed autistic children in institutions and with live-in help. Historically, that both men borrowed the term by the time they were 9 or 10 most have been seriously autism from adult psychlatr3 because thy were so out of control, handicapped, close to 80 percent where it had been used to refer to according to a state study. They were have been male and 75 percent have the progressive loss of contact with misdiagnosed as mentally ill, been mentally retarded, the outside world experienced by prokiundly retarded and suffering Although children with autism adult schizophrenics. Autistic frorayanous brain disorders, said Dr. may look normal, they are impaired children, though, showed this Edward Ritvo, an autism authority at in qualities that strike at the heart of withdrawal from an early age. the University of California, Los human experience. Talking and Famed psychologist Bruno Angeles. listening. Making friends and playing Bettelheim theorized in the 1960s They called them everything, with others. Thinking and learning, that children became autistic because he said. Many seem overwhelmed with the they were brought up by cold and But a whole series of events world, so they cling to rituals and unaffectionate refrigerator mothers edm the 1970s and 1980s, ioutines amid the chaos. and weak, absent fathers, His providing the supp4 for families to Some rock, run around in circles prescription: removing the children keep their children at home. Federal
t~t~ffl~5
By Kaildeen Wilson Staff w&er Dustm Floffman captured Raymond Babbitts autistic world in bvmg color for the millions who saw the movie Rain Man. Babbitt beat a Las Vegas casino, but couldnt make change,
law required school district educate disabled children in least restrictive setting, r in local schools when possit Psychiatrists defined autism separate disorder and began other professionals to recog Califurpia established a netti frornkgalattore4i{d~nt treatment for people with at other serious disabilities. Research funding began up in the 1990s after autism named as an orphan diseas commission established by I Reagan. Ritvo said Rain M~ helped promote research, as books on the disorder. Prior to that it was just i he said. Now there are mar centers all over the world w on it. Its totally out of the c
showed one aspect of auti Rain Man. Very f~w peor Hoffmans character was.
LABELS: Children being treated earlier as more people say the A word is just a word,
Continuedfrom A7 for the boom. He says the numbers started going up in the 1970s, long before the new standards were pub lished by the American Psychiatric Association in the 1980s and 1990s. The good news is that the new wave of autistic children is less like ly to be mentally retarded and more likely to be young when theyre di agnosed, improving their prognosis.
A dar,,rle ~rrn nyo r~ralnr,nf
when he was born after a textbook pregnancy. The doctors said he was fine. But his mother, Carolyn Den nis, noticed that he was different from their first son. Coby did not crave affection as most infants do instead he pushed her away when she tried to cuddle him. He could not handle it, she said. He would nurse very hard and fast and get it over with. Doctors at first thought Coby
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No medical test for autism ex ists, so diagnosis is partly a judg ment call for mildly affected chil dren like Coby, who now speaks in sentences and shows no signs of retardation. Science offers no easy answer because researchers know so little about the human genes that cause autism. Is mild autism really autism? We have no idea, said Dr. Joe Piven, professor of psychiatry at the University of North Carolina
Goldman, who oversees autism services m the Conejo Valley pub hc schools. 7ou can go to six dif ferent physicians and get a differ ent diagnosis every time. Theres no sure-fire way to telL B.J. Freeman, a medical psy chologist who directs the Autism Evaluation Chide at the Universi ty of California, Los Angeles, is in the middle of lie controversy. Critics question Whether shes di agnosing the disorder so liberally
services, takes a stricter vie than Freeman. If you broaden the descriptic to include so many things, after while its hard to discern what really is and how to treat it, h said. For now the controversy lies i how far the definition should b expanded, said Dr. Gary Feldmar a geneticist who diagnose autism. Push it too far, he said, an services for the severely affecte
electricity has qute y s o wend its way through Califor nias tangled thicket of proce dures for setting utility rates. Spanning more 1,000 pages, Application 00-01-009 asks state regulators in eye-
mons I posal, insist it is more equitable than cufrent rates and would end up costing most customers less. But opponents, who point out that residential customers now
-
costs that ought to be recovered on a fixed basis. We think theyre wrong as a matter of eco nomic theory We think theyre wrong looking at the specifics of how their system is designed
months deciding who is right, said Kyle DeVine, its Los Ange les spokeswoman. The PUC has Please see BIWNG on AG
student pai last week school pap said, to up Amendmet TRAFFIC: ~ 118 at So CRIME MA in your coi OPINION:~ casino tnt
SPECIAL REPORT
PART II OF III
CHILDREN n DISORDER
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SNACK TIME: Andrew Austin of Moorpark, eating a snack in the kitchen of his home, has needs as an autistic child that forced his parents to change their lives. He is going through extensive therapy so he can attend a regular kindergarten.
world
he boy is sup posed to be doing his math problems, but instead he is intent on singing The IWelve Days of Christmas, re fusing to stop until hes made it all the way through the 12 drum mers drumming. His classmate, meanwhile, spins his way back and forth across the classroom, shrieks, then crawls under a desk. This is routine behavior in Cathy Homes classroom of seven autistic children, mostly boys between 9 and 11 years old, at Laden School in Thousand Oaks. Its not a typical classroom. The desk blocking the door makes that clear immediately. ks there so the youngsters cant wander out perhaps trying to es cape the piercing racket and glar ing colors that assault their over charged nervous systems.
Home and her three aides have made other changes, too, so their students can learn. Adults speak in low voices be cause research shows autistic children have little tolerance for noise. A daily schedule posts pic tures next to the words because some of these students, even though theyre in fifth grade, dont read. One doesnt talk, ei ther. He uses a book with photos of his favorite things to show his teacher what he wants. In fact, everyone in the room uses lots of pictures, for every thing from communicating to teaching language and math. If its visual, they feel less anxious, said speech therapist Becky Singhal. It gives them a clue to whats happening in their lives. This scene is playing out in public schools across the state Please see AUTISM on AZ
INSIDE
Early and intensive treatment is apparently preparing Andrew Austin to enter kindergarten. A7
Far fewer minority students than whites get public help for autism, but the reasons arent clear. Al
Dear Abby
Editorials
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nd country, as teachers, polititrained. So r lans and parents grapple with blend of met] uestions about how to educate tures to corn: ie growing number of children social skills iagnosed with autism. The cost is with childrer igh, but so is the need. Nor has Farran said nything theyve done in recent that vanety ears prepared them for the enorfrom paren tity of the situation: a surge of schools are isabled students filling a dozen fits-all educai iore classrooms a year in Ventura In her cla~ Lounty alone, little agteernent on and chooses baching methods, high teacher gies, depen urnover, a severe shortage of child needs. herapists to develop speech and teach an ll-y botor skills, and pressure from showing him ~rents to do whatever it takes to of a cup, thc ilp their children learn, her what it is The job for special education the object, h enormous, said 0. Ivar Lovaas, pile of lette] pioneering researcher on autism word spelled the University of California, Los the picture. ugeles. Meanwhil At the heart of the problem is one who I ~itism itself, around the n I This is a brain disorder so difSince he brent from other disabilities that Home gives ~iildren need intense and individtos of the f wlized instruction to learn, quests. He r They need specially trained Starbursts, achers and aides, who often foods. ork with them in a ratio of one The chal. dult to every two or three chilwould have Lr n. Many require occupational there were s rapy to help calm their nervous what metho vstems, which overreact to such Arner-Coste v i yday things as a ticking clock for the coun the smell of perfume. They Staff photo by James Clever H Schools Off ually need speech therapists to isnt, a coun lp them learn to talk, and some- FJW Autistic twin brothers Tommy Romero, 5, left, and Nicky enjoy rough touch, or playing rough with each other. ing away fro mes behavior specialists to teach veloping ne~ em social skills and seif-discithe task forc line. tion, officials said. A study conducted by Lovaas S~fl cators is em And while some can be educatte h California severely under- and his colleagues at UCLA found rubY t take 16 days d in regular classrooms with the e are ac ing funds special education, said Bob that about half of 19 preschoolers ic sec or a certificate: Ip of an aide assigned exclu- children in a very Farran, head of a state association who received Ins behavioral train- services are not Amer-Co vely to them, many others stay s~~st m tic o of special-education directors. ing were performing normally at ade~u te and fi~~nciall meets the special education. - a We already dont have any the end of first grade and later as well as the 411 this costs money. County fashion how to talk, go money for anything new. adolescents and adults. The oth- how would they pay for Acknowledgi hool district which bear the to th ntt~z h ~ tn School administratorssay fam- ers did not achieve normal func- it~ If e r child ant the would help, nt of pro iding therapy and ed ilies want the Cadillac model for tionin and crc found to have V stftt. Whats tion on a autistic child greet people, how to sit their children when all the taxpay- e tr m difficulties pr cessing therapy they needed, it ctiousn n 3 i ndm hunclredsof and read and write. We ~ can provide isaChcvy lan ~ ~ ill ~ 1 would probably bankrupt
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Cahorna ~ Angele,who involvedin treatmentfor autism LOVAAS tionaily recognized program Panicked parent ar ob ii to that gap along with hat say are minimally tram ch era and occupati nal th r I and inadequate facthti 0 u tional therapy, for e I quires gym-like spac t ropes, beams and mats in s hool that dont have enough mon t build classrooms. School districts already are dipping into funding for nondi bI children to pay for special u Fhtd1i1~ The
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in t.Lo iid u it hv to Un ntn d mtinalh i ould n tiut an just h ri u t ndomi d ontrol tnal years Id h t ould ultim tily cost fixed. Of o m I h n thi . cal. Who wot h I us d the Lovaas Lovaas, th th 1970s, but many method wo. mov d th ir children special educ th in tiuction because yet to be pr i ts o ed behavior by though the r i uch as squirting training he I n in h f c with lemon $120,000 pe t a e ives are no its a bargaii I Lo method lifelong cost m b k nt fa luon, Far- with autism. . The Ion m duc t rs and par- this, he Si ts Lo a approach, problem will I
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CHILDREN in DISORDER
Andrew~
Andrew Austin 15 hours weel help him redu autism. His m Austin, hopes that Andrew c~ kindergarten ~ travel from Mc Valley to Thou~ various prograi Monday 9 to 10a.m.: therapy, Simi~ Tuesday 8:15 to 8:45 therapy, Moon 9:15 a.m. to program, Thou 2:30 to 7:30 I student from t Californias Sa campus works Andrew to dev such areas as
Austin put more than K~O miles on the family van in ~onths after her 2-year-old Andrew, was diagnosed with e took the boy with the age of a 1-year-old to s appointments, attended rerences and went to ~ft group meetings. She ~ him almost every day to ;s preschool and therapy rams in three cities. She bout autism, asked tions and made lots of a calls. the schedule was intense, :said, and there were no bpie answers. frTheres no blueprint on ~at these kids should get, the ~year-old Moorpark resident 4 I think thats the ~trating part. 5She found that the therapy ~df could be frustrating. lAustin still remembers that jiast summer when specialist jpdy Carter showed her how to ~Id the line when the brown fred, brown-eyed boy threw
8:15 to 8:45
therapy, Mooq 9 to 11a.m.: Moorpark 3 to 4 p.m.: S Moorpark horn specialist
Thursday
WHERE IS IT? Brenda Austin, left, and Cindy Carter, a UCSB graduate student, help Andrew develop social and language skills. They encourage him to say over by tossing the ball back and forth over his head.
tantrums instead of trying to talk. Andrew kept leading her to the refrigerator and put her hand around the white grape juice he wanted, but he refused to try to say juice. Finally after two hours filled with screaming and crying, he said jult That was a breakthrough., Austin said, and the boy, who is
8:45 to 9:45 specialist work an indMdual b May 11 a.rn. to 12: class, Moorpar 3to4p.m.: Oi therapy, Simi \
couple isnt sure whether to have another child becau.se of the demands of ca.ring for him
child with a disability. From the beginning, specialists disagreed about whether he had autism or a less serious language delay. But his mother said. that she wanted to give him every chance after autism speciali.st Bj. Freeman told her Andrew could enter a regular kindergarten if he
received early and intensive services, Close to a year later, his mother said, the effort has been well worth it. Im so prou.d of him, she said. He has made amazing accomplishments in such a short period of time,
BEatrice Flores struggles to rstand her 4-year-old sons autism in English-speaking world. .The Oxnard single mother found scant tion written in Spanish about dos disability. Friends and neighbors werent much either. ey told her the little boy who didnt md exploded in anger was crazy. Nor, she said, did educators and ors seem to know what he had. I felt alone, Flores said. I didnt to know anything except what could ne for my son.
Advocates fear that Flores is just one of scores of parents with autistic children who receive inadequate services because they lack the money, language or education to battle for speedy diagnosis and treatment. Administrator Sean Goldman noticed the discrepancy in the number of parents asking for special services for autism when he moved from the predominantly Latino and working-class Rio School District to the heavily white and affluent Conejo Valley Unified School District. There if it happened once a year it would be a lot, he said. Here its every day. Portia Iversen, president and founder of the Cure Autism Now research foundation in Los Angeles, says minorities are very underserved. Whatever the reason is, we have very few of these families involved in this organization, she said. Theyre not showing up at the good schools, theyre not going to the good therapists, somehow theyre not
connecting in. Specialists say autism occurs in a broad range of racial and ethnic groups, but state figures suggest that, compared with minorities, whiteslitttverrepresentttd among autism clients receiving tax-paid state services. The discrepancy is pronounced in two selected affluent counties, Ventura and Orange. Last year, 78 percent of autism clients in Ventura County were white and 22 percent were minorities, excluding those with an unknown or other racial background, The countys population is 57 percent white and 43 percent minority. Latinos, representing about one-third of the county population, totaled 17 percent of the autism clients. In Orange County, whites make up about half th.e population but close to three-quarters of the autism clients. Minorities, making up the other half of the countys population, accounted for only one-fourth of the autism clients.
Statewide, the discrepancy existed in 1999, but at a much smaller rate. Whites make up hail the population but 54 percent of the autism clients. Latinos, the largest minority group in California, make up one-third of the state population but one-fifth of the autism clients. Paul Verke, spokesman for the state Department of Developmental Services, declined to comment on the discrepancies. It would be pure speculation, lie said. Bob Baldo, executive director of a state association of regional centers providing autism services, said he was not surprised. Fle predicted the trend would probably be more pronounced by income groups. People aware of the services out there are in a better position to ask for these things, he said. Administrators said the centers employ bilingual staff and make information available in various languages. But in some cultures, Baldo said, families shun state agencies that send therapists into the home. They may want to take care of
their own or fear that country illegally will b< One advocate said 1 families considered or pay for private then with what the state wi Nobody says you services, but they don these services you can advocate, who declined Flores, 25, said she psychological counselir with her sons disabilit3 because she could not help through Autismo, support group. It meeb the fourth Thursday of Esplanade Drive, Suite Coordinator Benita members come to shar Flores puts it anothi These people have me, she said. They a You need to get clo~ have similar problems. understand more.
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