freedoms, healing & stories in the news
Diagnostic & Statistical Manual (DSM) & Psychology topics including autism, autistic spectrum disorders, intellectual disability, mental retardation & ADHD
Does your child smile and laugh when looking at you?
When your child plays with toys does he/she look at you to see if you are watching?
When you are not paying attention, does your child try to get your attention?
Does your child point to objects?
Does your child nod head to indicate yes?
About how many different words does your child use meaningfully that you recognize?
The above questions are from the the CBS Intant-Toddler Checklist. Visit www.brookspublishing.com for more information.
Through Early Start the regional centers serve many children with social and communication delays. Children do not need a diagnosis of autism or autistic spectrum disorder to receive early start services from 0-3.
In Santa Cruz County, a variety of venders provide services under the auspices of the local regional center. A wide variety of programs are available from P.L.A.Y. – which as its name denotes helps parents to have fun while interacting and teaching age appropriate social and communication activities to their children – to strict ABA type programs such as ABRITE wherein, I have been told, the parent is not permitted in the room during therapy sessions.
Personally, for various reasons I support programs such as P.L.A.Y offerred locally through Easter Seals in Santa Cruz (http://central.easterseals.com). I also support Floortime approaches. One local therapist with Floortime using a DIR approach is licensed MFT Lisa de Faria, located in Scotts Valley. Through her you can obtain other names of competent therapists using the DIR and Floortime model.
It is possible, though not frequently done, for parents receiving Early Start regional center services to create their own particular mix of social skills training, speech and occupational therapy. When people come out to assess, that is the best time for the parent to state that they want to be in charge of the mix of services offerred.
Below is an article by Jill Echer. From her blog: Autism Tomorrows www.autismtomorrows.blogspot.com
What the Psychologist Should Have Said by Jill Echer from her blog: autismtomorrows.blogspot.com
“If psychologists told the truth when delivering an autism diagnosis, this is what they would say.
“Thank you, Mr. and Mrs. Jones, for bringing little Joey in to see me. It was an honor and privilege to spend time with such a sensitive and special child. I know you are concerned about Joey’s social development, and I can understand that; as you know, when we see distortions in social development, we usually give it a label, an autism spectrum disorder. But just because we have a label, that doesn’t mean we understand the problem any more than you do.
I see the same things you saw before you made the appointment, for example, Joey is not pointing to objects and then referencing you, as normal toddlers do many dozens of times each day. He’s not responding to his name or turning his head when you say, “Look at this!.†He does not share and show, or draw attention to himself. He has a few words to label objects but it not engaging in any little conversations or respond to questions. He’s not interested in other children, lacks eye contact, and does not pretend play with toys. I am not any more observant than you, I just have the ability to put these omissions in stark relief by administering some diagnostic tests.
We have no idea why Joey is developing so differently than other kids his age. New theories seem to be developing every day, and just about everyone agrees that autism is a neurobiological disturbance caused by a mix of genetic and environmental factors. Some theories relate to neural under connectivity, neural overgrowth, lack of synaptic pruning, failure of certain neural pathways to develop, weakness of the mirror neuron system, neuroinflammation, mitochondrial dysfunction, even hormonal influence on the developing brain. But in the end, we just don’t know.
I know what you’re thinking: why would a psychologist like me have any business diagnosing and treating a mysterious neurological disorder? That’s a good question. In reality, the field of psychology is completely irrelevant to autism. And worse, and I’m very sorry about this, my profession has a history of doing more harm than good to people with autism, and their families. For decades, from the 50s through the 70s, we routinely blamed the children’s mothers for causing the social withdrawal resulting in autism. Then from the 80s to today most of us have portrayed autism as a behavioral disorder addressable at least in part through behavior modification based on discredited work by someone who knew nothing about autism, named BF Skinner. His legacy is a form of systematic rewards and punishments used originally on dogs and pigeons. Psychologists who follow the behavioral model don’t believe in addressing the core deficits of autism, just shaping external behaviors. My profession has done a poor job of developing or understanding effective therapies; in fact we do very little hands-on work with your kids. Most of our observations come from ivory tower research papers; we remain naive and a bit mystified about how to implement meaningful therapy.
You asked about prognosis. There are few good longitudinal studies examining long-term outcome, but from my experience I see that children with these early developmental patterns have some level of social and sensory difficulty that persists throughout life, although there is evidence that some children do in fact recover. Some individuals move along the spectrum and become quite functional; others are wired in such a way that they always have profound problems relating to our world.
That said, we psychologists have done a terrible disservice by presuming your kids are mentally retarded, when in fact so many people with autism, though nonverbal and remote, have proven to have active and engaged intellects. We know this because many of them have learned to type or point to communicate amazing and complex thoughts. I myself have met several of these kids and believe that a great many people with autism could do the same if given appropriate help and guidance. I am sorry that my profession has perpetuated so many myths about people with autism. Autism for the most part is a disorder of the sensory-social system and not of the intellect.
You asked about next steps. We psychologists usually follow a cookie-cutter approach that recommends a total of 25 hours per week of intervention, including about 10-18 hours per week of ABA and about 7-15 hours of other therapies, including speech therapy, occupational therapy, and play group.
But let me tell you the truth. By running a parent-led home program, you are free to emphasize the critical deficits in autism, namely development of social interest and relatedness. You will have complete control over quality and training of the therapists and the ability to videotape sessions to provide constructive feedback to the therapists. It is not as hard and daunting as it sounds. For one example of an excellent home program, see autismtreatmentcenter.org.
The real issue here is not parent competence, but availability of support and funding, even though 40 hour per week parent-led programs cost one-quarter as much as 20 hour per week therapist-led ABA programs. But because agencies, school districts and insurance do pay for some portion of an ABA program, cost efficiency is a moot point for some families, and I understand that.
You asked about Joey’s repetitive behaviors, like flapping his hands, and sifting sand, and spinning wheels. Well, I know we psychologists have labeled these type of repetitive behaviors as aberrant and maladaptive, and again, I am sorry about that. We have no idea why Joey does these things, but of course these activities have meaning and value to him; it how he is taking care of himself and exerting some control over his confusing world.
We have sought to extinguish these type of activities through behavior modification, but that almost never works. Please look at Joey’s repetitious behaviors as an opportunity to join him in his world, to get to know him better. It’s a wonderful starting point for strengthening your relationship and earning his trust. Do not judge him, after all he is doing the very best he can given his most unusual neural wiring. Your total acceptance will be the best starting point down the road.
For more articles by Jill Escher, go Jill Echer Autism Tomorrows
the above was written by Jill Escher
“I’m a former attorney, a stay at home mom of three, and an active community volunteer. For those who care about resume type information, I grew up in Los Angeles, have a BA from Stanford University (1987), and a Masters and a J.D. from the University of California, Berkeley (both 1996). We live in San Jose and Santa Cruz, California. The goal of this blog is to help parents of children with autism think critically, and in a more informed way, about their children’s treatment options. Please reach me at jill.escher@gmail.com.
View my complete profile
Check out and support senate bill introduced by Senators Durbin (D-Il) Casey (D-PA ), and Menendez (D-NJ): the Autism Treatment and Acceleration Act 2009 (ATAA) http://www.autism-society.org/site/news2?page=NewsArticle&id=13301. ATAA would create many services for adults with autism- vocational, employment, housing and transportation to name a few. This is something for all of us to support.
831 688-6002 Licensed psyhologist Dr. Cameron Jackson, Ph.D. writes: The increase in autistic spectrum disorders is so huge and fast that finding enviornmental causes — and doing so quickly — is crucial to getting a handle on this disorder. Per regional center data, in 30 years the number of persons served by the California regional centers diagnosed with autism jumped 1200% from 2,701 in 1987 to 34,656 in 2007.
Judith Grether, Ph.D. research scientist with the Enviornmental Health Investigations branch of the California Department of Public Health speaks this Wed., May 27 at the Morgan Autism Center, 2280 Kenwood Av., San Jose, CA 95128. Cost is $20. Call 408 241 8161 for more information.
For more information about Morgan Autism Center go to Morgan Center
written by Dr. Cameron Jackson, Ph.D.. L.D. Licensed Psychologist 831 688-6002
Children with a diagnosis of Autistic Spectrum Disorder (ASD) (Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disorder, NOS) have major social and communication difficulties.
Families need to be given the TOOLS how to have fun and be spontaneous with their children as they teach them. It is very hard on families to be social and engaging with ASDD children who seem to be in their own world, who seem to ignore their parents, who seem unaware of brothers and sisters.
The P.L.A.Y. project’s goal is to teach parents to PLAY in a fun way in developmentally appropriate ways. Not only the child – the whole family can benefit. Currently available in Monterey County, P.L.A.Y. is also available to Santa Cruz County parents. P.L.A.Y. is a vendor of San Andreas Regional Center which covers the four counties of Santa Cruz, Monterey, San Benito and Santa Clara. Pl.L.A.Y. is a regional center vendor for under 3 children. It is appropriate for children before attending school.
The following information comes from the Easter Seals site. There is a link to the site at the bottom.
“Easter Seals P.L.A.Y. Project (Play and Language for Autistic Youngsters) program started in 2006. The mission of the project is to help young children (up to age 6) with autism spectrum disorders and their families obtain interventions that consist of 2-3 hours of intensive, individualized therapy per day, and are integrated with other therapies saving the parents time and money.
“The P.L.A.Y. Project is unique in that it provides training for the parents of children with autism so they can implement therapy at home. Easter Seals has home consultants, including specially trained occupational therapists and speech pathologists, to implement the P.L.A.Y. Project, enabling them to teach parents how to initiate therapy in the home setting. A child with autism needs 20-30 hours per week of therapy to learn and grow as quickly as possible. This project is highly cost effective for families and enables the child to receive a continuum of service throughout their day.
“The P.L.A.Y. Project was founded by Dr. Rick Solomon, who has diagnosed and treated children with autism for over 15 years. Dr. Solomon’s initial study of 70 children with autism demonstrated that 65% of the children in the P.L.A.Y. Project made good to excellent progress. Solomon’s study has been given tremendous credibility with its recent acceptance for publication in the Journal of Autism and receipt of a National Institute of Health grant.
Goals of the P.L.A.Y. Project include:
Improving parent/child relationships.
Improving behavior of the child reducing stress within the home.
Including siblings in coaching and training.
Creating strong families including improved spousal relationships
Improving child development so children are ready for school.
Improving systems for families so services are integrated, accessible, culturally-appropriate and of high quality.The P.L.A.Y. Project is partially funded by First 5 Monterey County, First 5 Fresno County and the Fansler Foundation.
“If you or someone you know would like information regarding the P.L.A.Y. Project, please contact Drea Martinez at 559-267-3952 in Fresno and Mark Wenzler at 831-684-2166 in Monterey.
“For more information about the P.L.A.Y. Project, you can also visit www.playproject.org.
Above comes from Easter Seals
Free screenings for possible SOCIAL & COMMUNICATION delays in children ages 6 – 36 months. By appointment with licensed clinical psychologist on Fridays and Saturdays, 1-4 pm. Office located in Santa Cruz. Call 831 688-6002 and leave name and telephone number. Or write P.O. Box 1972, Aptos, CA 95001-1972. For information about autistic spectrum disorders and other childhood dificulties visit and discuss your questions on Monterey Bay Forum, www.freedomOK.net/wordpress
The following is from The Atlantic article on happiness. Citation at bottom.
“What allows people to work, and love, as they grow old? By the time the Grant Study men had entered retirement, Vaillant, who had then been following them for a quarter century, had identified seven major factors that predict healthy aging, both physically and psychologically.
“Employing mature adaptations was one. The others were education, stable marriage, not smoking, not abusing alcohol, some exercise, and healthy weight. Of the 106 Harvard men who had five or six of these factors in their favor at age 50, half ended up at 80 as what Vaillant called “happy-well†and only 7.5 percent as “sad-sick.†Meanwhile, of the men who had three or fewer of the health factors at age 50, none ended up “happy-well†at 80. Even if they had been in adequate physical shape at 50, the men who had three or fewer protective factors were three times as likely to be dead at 80 as those with four or more factors.
What factors don’t matter? Vaillant identified some surprises. Cholesterol levels at age 50 have nothing to do with health in old age. While social ease correlates highly with good psychosocial adjustment in college and early adulthood, its significance diminishes over time. The predictive importance of childhood temperament also diminishes over time: shy, anxious kids tend to do poorly in young adulthood, but by age 70, are just as likely as the outgoing kids to be “happy-well.†Vaillant sums up: “If you follow lives long enough, the risk factors for healthy life adjustment change. There is an age to watch your cholesterol and an age to ignore it.â€
The study has yielded some additional subtle surprises. Regular exercise in college predicted late-life mental health better than it did physical health. And depression turned out to be a major drain on physical health: of the men who were diagnosed with depression by age 50, more than 70 percent had died or were chronically ill by 63. More broadly, pessimists seemed to suffer physically in comparison with optimists, perhaps because they’re less likely to connect with others or care for themselves.
For more information about “mature defenses” and what allows people to work and love when old, go to
This story is from the famous study of Harvard men selected from the classes of 1942, 1943 and 1944. Half of the men are still alive today. They are now in their late 80’s. One Harvard selectee was President Kennedy. Their lives were followed and are still followed.
It appears to me that what matters is how we respond to what life puts on our plate. We don’t get to pick what is on our plate. We can affect how we respond. What say you to the following story?
“Vaillant … tells the story of a father who on Christmas Eve puts into one son’s stocking a fine gold watch, and into another son’s, a pile of horse manure. The next morning, the first boy comes to his father and says glumly, “Dad, I just don’t know what I’ll do with this watch. It’s so fragile. It could break.†The other boy runs to him and says, “Daddy! Daddy! Santa left me a pony, if only I can just find it!â€
For the complete article, go to The Atlantic
Melatonin helps children go to sleep and sleep better per Autism Research Institute’s poll of over 1200 parents. Find out about other over the counter supplements such as cod liver oil and vitamins. For more complete information, go to the web site for Autism Research Institute.
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116 USA
“The parents of autistic children represent a vast and important reservoir of information on the benefits-and adverse effects- of the large variety of drugs and other interventions that have been tried with their children. Since 1967 the Autism Research Institute has been collecting parent ratings of the usefulness of the many interventions tried on their autistic children.
“The following data have been collected from the more than 26,000 parents who have completed our questionnaires designed to collect such information. For the purposes of the present table, the parents responses on a six-point scale have been combined into three categories: “made worse†(ratings 1 and 2), “no effect†(ratings 3 and 4), and “made better†(ratings 5 and 6). The “Better:Worse†column gives the number of children who “Got Better†for each one who “Got Worse.â€
“There are three sections: Drugs, Biomedical/Non-Drug/Supplements, and Special Diets. Download a one-page Adobe (.pdf) file containing all three sections.
Drugs
Biomedical/Non-Drug/Supplements
Special Diets
Drugs
Note: For seizure drugs: The first line shows the drug’s behavioral effects; the second line shows
the drug’s effects on seizures.
Possible Adverse Effects of Prescription Drugs
Got
WorseA No
Effect Got
Better Better:
Worse No. of
CasesB
Aderall 43% 25% 32% 0.8:1 775
Amphetamine 47% 28% 25% 0.5:1 1312
Anafranil 32% 38% 30% 0.9:1 422
Antibiotics 33% 53% 15% 0.5:1 2163
AntifungalsC: Diflucan 5% 38% 57% 11:1 653
AntifungalsC: Nystatin 5% 44% 50% 9.7:1 1388
Atarax 26% 53% 22% 0.9:1 517
Benadryl 24% 50% 26% 1.1:1 3032
Beta Blocker 17% 51% 31% 1.8:1 286
Buspar 27% 45% 28% 1.0:1 400
Chloral Hydrate 41% 39% 20% 0.5:1 459
Clonidine 22% 31% 47% 2.1:1 1525
Clozapine 37% 44% 19% 0.5:1 155
Cogentin 19% 54% 27% 1.4:1 186
Cylert 45% 36% 20% 0.4:1 623
Deanol 15% 57% 28% 1.9:1 210
DepakeneD: Behavior: 25% 43% 32% 1.3:1 1071
DepakeneD: Seizures 11% 33% 56% 4.8:1 705
Desipramine 34% 35% 31% 0.9:1 86
DilantinD: Behavior 28% 49% 23% 0.8:1 1110
DilantinD: Seizures 15% 37% 48% 3.3:1 433
Felbatol 20% 55% 25% 1.3:1 56
Fenfluramine 21% 52% 27% 1.3:1 477
Haldol 38% 28% 34% 0.9:1 1199
IVIG 10% 44% 46% 4.5:1 79
KlonapinD: Behavior 28% 42% 30% 1.0:1 246
KlonapinD: Seizures 25% 60% 15% 0.6:1 67
Lithium 24% 45% 31% 1.3:1 463
Luvox 30% 37% 34% 1.1:1 220
Mellaril 29% 38% 33% 1.2:1 2097
MysolineD: Behavior 41% 46% 13% 0.3:1 149
MysolineD: Seizures 19% 56% 25% 1.3:1 78
Naltrexone 20% 46% 34% 1.8:1 302
Paxil 33% 31% 36% 1.1:1 416
Phenergan 29% 46% 25% 0.9:1 301
PhenobarbitalD: Behavior 47% 37% 16% 0.3:1 1109
PhenobarbitalD: Seizures 18% 43% 39% 2.2:1 520
Prolixin 30% 41% 29% 1.1:1 105
Prozac 32% 32% 36% 1.1:1 1312
Risperidal 20% 26% 54% 2.8:1 1038
Ritalin 45% 26% 29% 0.7:1 4127
Secretin: Intravenous 7% 49% 44% 6.3:1 468
Secretin: Transdermal 10% 53% 37% 3.6:1 196
Stelazine 28% 45% 26% 0.9:1 434
Steroids 35% 33% 32% 0.9:1 132
TegretolD: Behavior 25% 45% 30% 1.2:1 1520
TegretolD: Seizures 13% 33% 54% 4.0:1 842
Thorazine 36% 40% 24% 0.7:1 940
Tofranil 30% 38% 32% 1.1:1 776
Valium 35% 41% 24% 0.7:1 865
Valtrex 6% 42% 52% 8.5:1 65
ZarontinD: Behavior 35% 46% 19% 0.6:1 153
ZarontinD: Seizures 19% 55% 25% 1.3:1 110
Zoloft 35% 33% 32% 0.9:1 500
Biomedical/Non-Drug/Supplements Got
WorseA No
Effect Got
Better Better:
Worse No. of
CasesB
CalciumE: 3% 62% 35% 14:1 2097
Cod Liver Oil 4% 45% 51% 13:1 1681
Cod Liver Oil with Bethanecol 10% 54% 37% 3.8:1 126 Colostrum 6% 56% 38% 6.1:1 597
Detox. (Chelation)C: 3% 23% 74% 24:1 803
Digestive Enzymes 3% 39% 58% 17:1 1502
DMG 8% 51% 42% 5.4:1 5807
Fatty Acids 2% 41% 56% 24:1 1169
5 HTP 13% 47% 40% 3.1:1 343
Folic Acid 4% 53% 43% 11:1 1955
Food Allergy Treatment 3% 33% 64% 24:1 952
Hyperbaric Oxygen Therapy 5% 34% 60% 12:1 134
Magnesium 6% 65% 29% 4.6:1 301
Melatonin 8% 27% 65% 7.8:1 1105
Methyl B12 (nasal) 15% 29% 56% 3.9:1 48
Methyl B12 (subcutaneous) 7% 26% 67% 9.5:1 170
MT Promoter 13% 49% 38% 2.9:1 61
P5P (Vit. B6) 12% 37% 51% 4.2:1 529
Pepcid 12% 59% 30% 2.6:1 164
SAMe 16% 63% 21% 1.3:1 142
St. Johns Wort 18% 66% 16% 0.9:1 150
TMG 15% 43% 42% 2.8:1 803
Transfer Factor 10% 48% 42% 4.3:1 174
Vitamin A 2% 57% 41% 18:1 1127 Vitamin B3 4% 52% 43% 10.1:1 927
Vitamin B6 with Magnesium 4% 48% 48% 11:1 6634
Vitamin B12 (oral) 7% 32% 61% 8.6:1 98
Vitamin C 2% 55% 43% 19:1 2397
Zinc 2% 47% 51% 22.1:1 1989
Special Diets
Got
WorseA No
Effect Got
Better Better:
Worse No. of
CasesB
Candida Diet 3% 41% 56% 19:1 941
Feingold Diet 2% 42% 56% 25:1 899
Gluten- /Casein-Free Diet 3% 31% 66% 19:1 2561
Removed Chocolate 2% 47% 51% 28:1 2021
Removed Eggs 2% 56% 41% 17:1 1386
Removed Milk Products/Dairy 2% 46% 52% 32:1 6360
Removed Sugar 2% 48% 50% 25:1 4187
Removed Wheat 2% 47% 51% 28:1 3774
Rotation Diet 2% 46% 51% 21:1 938
Specific Carbohydrate Diet 7% 24% 69% 10:1 278
A. “Worse†refers only to worse behavior. Drugs, but not nutrients, typically also cause physical problems if used long-term.
B. No. of cases is cumulative over several decades, so does not reflect current usage levels (e.g., Haldol is now seldom used).
C. Antifungal drugs and chelation are used selectively, where evidence indicates they are needed.
D. Seizure drugs: top line behavior effects, bottom line effects on seizures.
E. Calcium effects are not due to dairy-free diet; statistics are similar for milk drinkers and non-milk drinkers.
© 2008 Autism Research Institute | Notices | DAN! Webcasts
Special Education is enormously expensive. The overhead expenses of administration are enormous. School districts must pick up the cost for special education from the age of 3 onward. With the huge increase in students categorized as “autistic-like” by the schools, special educaiton costs are sky rocketing.
Santa Cruz County has 10+ different school districts and two SELPAs. Every school district has a different Special Education Director. The two SELPAs must divide up money in some equitable manner between these 10+ school districts.
Imagine the money that could be saved if there was ONE SELPA and far fewer school districts? Parents need to unionize on behalf of their children and work with the schools for sensible change. Parents & the public must work to reduce overhead administrative costs. We must work so the special educaton “goodies” are spread more equitably.
www.freedmOK.net/wordpress
