Tag Archives: Intellectual Disabilities

CDC Data and Statistics that you may not know.

Hi, We have a new volunteer. Our first. Elizabeth Campion,  from the Shelby Township library here in Michigan. She is an expert at mining data, She did this as a sample of her work. Even I had not heard all these facts. I thank her for this work.





About one in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.

ASD’s are reported to occur in all racial, ethnic, and socioeconomic groups.

ASD’s are almost five times more common among boys (1 in54) than among girls (1 in 252).

Studies in Asia, Europe, and North America have identified individuals with an ASD with an average prevalence of about 1%.  A recent study in South Korea reported a prevalence of 2.6%.

About one in 6 children in the U.S. had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.



Studies have shown that among identical twins, if one child has an ASD, then the other will be affected about 36-95% of the time.  In non-identical twins, if one child has an ASD, then the other is affected about 0-31% of the time.

Parents who have a child with an ASD have a 2-18% chance of having a second child who is also affected.

ASDs tend to occur more often in people who have certain genetic or chromosomal conditions.  About 10% of children with autism are also identified as having Down syndrome, fragile X syndrome, tubers sclerosis, and other genetic and chromosomal disorders.

The majority (62%) of children the ADDM Network identified as having ASDs did not have intellectual disability.

Children born to older parents are at a higher risk for ASDs.

A small percentage of children who are born prematurely or with low birth weight are at greater risk for having ASDs.

ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal and genetic diagnoses.  The co-occurrence of one or more non-ASD developmental diagnoses is 83%.  The co-occurrence of one or more psychiatric diagnoses is 10%.

Research has shown that a diagnosis of autism at age 2 can be reliable, valid and stable.

More children are being diagnosed at earlier ages – a growing number (18%) of them by age 3.  Still, most children are not diagnosed until after they reach age 4.  Diagnosis is a bit earlier for children with autistic disorder (4years) than for children with the more broadly-defined autism spectrum diagnoses (4 years, 5 months) and diagnosis is much later for children with Asperger Disorder (6 years, 3 months).

Studies have shown that parents of children with ASDs notice a developmental problem before their child’s first birthday.  Concerns about vision and hearing were more often reported in the first year, and differences in social, communication, and fine motor skills were evident from 6 months of age.



Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110-$6,200 per year.  On average, medical expenditures for individuals with an ASD were 4.1 – 6.2 times greater than for those without an ASD.  Differences in median expenditures ranged from $2,240 to $3,360 per year, with median expenditures 8.4 – 9.5 times greater.

In 2005, the average annual medical costs for Medicaid-enrolled children with an ASD were $10,709 per child, which was about six times higher than costs for children without an ASD ($1,812).

In addition to medical costs, intensive behavioral interventions for children with ASDs cost $40,000 to $60,000 per child per year.

Question?: Autistic Definition

Ruth asks…

What are some good things to do with autistic kids?

My cuz is autistic and I ned to find done good ways to play with him. can you help me?

admin answers:

There are different forms of autism, and different levels of disability across the whole spectrum. About 40% of all people on the spectrum have intellectual disabilities as well, this is a lot higher for people with Autistic disorder but people with Asperger’s syndrome, by definition, are in the normal range. Some people have no speech, whilst others have minor idiosyncrasies (or no abnormalities). The vast majority have sensory problems, but this varies greatly as well.

You didn’t mention how old he is either, it would obviously be inappropriate to read a Teletubbies book to an intellectually normal, high functioning 15 year old.

If the individual is high functioning, then an age appropriate activity (tailored around an interest) would be fine.

If the individual is low functioning, then you could watch a favorite TV show with them. Even with low functioning individuals, there are some with no communicative abilities or ability to interact with others, if your cousin is this severe then there is little playing you would be able to do with him. With individuals with some speech, a simple, repetitive card game (such as happy families) would be good.

There is a strong possibility that he has a specific interest, reading a book about this (be it horses or lawnmowers) with him would probably be a good way of entertaining him.

Also, try going to the park. Unless he is very severe then this would be good for anyone. Every child likes going to the park and insomnia and ADHD like behaviors are very common amongst individuals on the spectrum, some exercise will help with this a lot.

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Autism FAQ: “I think I have Aspergers. Where can I go for a diagnosis and support?

Perhaps the most heart wrenching question that I am asked goes something like this:

“I’ve struggled for years with social relationships and while I am very capable, I have a very hard time getting and keeping a job. I think I might have an autism spectrum disorder, but have no idea of where to get a diagnosis. Can you help me?”

I asked Camilla Bixler of AASCEND for help answering this question, who in turn consulted with Dr. Clarissa Kripke of UCSF for some recommendations.


“Within psychology or psychiatry,” says Dr. Kripke,”there are a few individuals with sufficient training and experience to diagnose Aspergers or Autism, but not many. ”

For people who do have intellectual disabilities or who need “Official” diagnosis to access resources such as regional center, vocational rehabilitation, educational or work accommodations, biomedical treatments, or insurance benefits, Dr. Kripke’s list of resource recommendations are:

Autism Clinic at UCSF—Bryna Siegel will do a diagnostic evaluation an adult and will make an accurate diagnosis using standard definitions and methods.  Advantages are that no bureaucrats from public agencies will challenge the accuracy of the diagnosis from the Autism Clinic and that it will provide solid documentation to use for negotiating access to resources, services and supports.  Don’t expect a warm, fuzzy experience. If the person has MediCal and no UCSF primary care doctor, they can’t see them.  However, if MediCal managed care doesn’t offer an alternative (likely because they have no providers), then an appeal/complaint can be filed to cover the service.Rich Goldwasser, MD Adolescent psychiatrist in Mill Valley 415-381-1690 private practice–expensiveRegional Center for those with functional limitations in 3 or more areas of major life function. Free.  They will only do eligibility assessment—not full diagnostic; Aspies don’t qualify.Chinatown Public Health Center (Community Health Network-MediCal clinic in SF) has an autism clinic for kids. They don’t really see adults, but their adolescent psychiatrist would be the only resource I can think of for someone who speaks Cantonese or Mandarin.


For people who have normal intelligence and whose interest in diagnosis is primarily for self-exploration, one tool is the Ritvo Autism/Asperger Diagnostic Scale-Revised. http://www.springerlink.com/content/fhj14075h450547q/fulltext.pdf This is a test that is self-administered with someone present to answer any questions about the meaning of the questions.   It is pretty accurate for those with normal intelligence.


Managing Meltdowns Deborah Lipsky, Unwritten Rules of Social Relationships, Temple Grandin, A Field Guide to Earthlings by Ian Ford (I like BE DIFFERENT-Laura)


AASCEND, Austistic Self Advocacy Network, Autism National Committee (to name a few)


WrongPlanet and Autism Network International.  (Laura like THINKING PERSONS GUIDE TO AUTISM-check their resource page HERE) For more resources,  Jessica Kingsley and Brookes are the two main publishers of disability books.  Pick resources written by self advocates to start as they are usually more practical and relevant.

**Exercising Rights to Access these resources for people with managed care health insurance:

If someone has managed care (e.g. San Francisco Health Plan, Health Net, Kaiser), they should get a referral from their primary care doctor and then can call their insurance company and ask for a health care provider in their network to do the assessment.  It is possible the Health Plan has resources I don’t know about.  If the Health Plan doesn’t provide an appointment with someone within 15 days, they are out of compliance with the Timely Access Law. It is important to file a complaint with the health plan and the state if the managed care company doesn’t produce a an appropriate appointment, because otherwise they can’t be held accountable.  The health plans have to fund an out-of-network provider if they don’t have someone in their network AND fail to arrange an appointment within 15 days.  However, I would probably give them a reasonable amount of time like a month or two if they are working on getting the appointment, unless there is some urgency.  Keep all paperwork and document every phone conversation. Some common games insurance companies play:

1.       Most Health Plans subcontract mental health to another organization that specializes in mental health.  The Health Plan may try to say that diagnosis of autism is the responsibility of their behavioral health subcontractor.  If so, follow the procedures to get the service through the behavioral health contractor.  The contractor may say it is the responsibility of the Health Plan.

2.       The Health Plan may claim diagnosis of autism isn’t a covered benefit or that it is the responsibility of regional center, voc rehab, or the school.  That is not correct.  SB 946 says they have to cover autism diagnosis, care and services.

3.       They may also refer to someone who doesn’t see adults, or who is unqualified or inexperienced.  That is also not acceptable.  Call and ask about the qualifications of the person they refer you to and their training and experience.

If you don’t have success with getting an appropriate appointment, start by following your health plans procedures for filing a complaint or appeal. File one with the behavioral health subcontractor too if needed.  If they still deny the care, file a complaint with the CA Dept of Managed Health Care.  To learn your rights and how to file a complaint with the Dept. of Managed Health Care: http://www.dmhc.ca.gov/dmhc_consumer/br/br_rights.aspx; http://www.dmhc.ca.gov/dmhc_consumer/br/br_timelyacc.aspx.  Doing all this is a bother, but unless we file complaints, these needed resources are never going to materialize.  Even if they don’t lead to an appropriate appointment/diagnosis this time, at least it will force health plans to deal with developing their network.  It will also put a person in a good position to win an appeal to get reimbursed for any out-of-pocket expenses if they self-pay.

Other specialists who might get involved with adult diagnosis:

-Neuropsychologists are good for administering standardized IQ and other cognitive tests to determine someone’s cognitive strengths and weaknesses.  It is helpful if you are trying to diagnose intellectual disability or long term cognitive problems related to an injury or illness.  They have no training in diagnosis of autism spectrum disorders.  Their IQ and other tests may not be valid for people on the spectrum.  This testing is typically lengthy (like 8-12 hours) and expensive.

-UCSF or Stanford Genetics can do assessments to diagnose genetic disorders if a genetic condition is suspected by their doctor.

-Psychologists and psychiatrists can help diagnose mental illness.

-Neurologists can help diagnose seizures (which aren’t always obvious) or other neurological conditions like tics and movement disorders

-San Francisco City College and Vocational Rehab have some educational/vocational resources through their assessments and disability services, but their expertise is limited.


Camilla Bixler is the parent of an adult son with Asperger Syndrome. She is the founder of AASCEND,(Autism, Asperger Syndrome Coalition for Education, Networking and Development

Dr.  Clarrisa Kripke is Associate Clinical Professor of Family and Community Medicine. She cares for people of all ages and has special interests in primary care of transition age youth and adults with developmental disabilities.  She directs the Office of Developmental Primary Care a program dedicated to improving outcomes for people with developmental disabilities across the lifespan with an emphasis on adolescents and adults.


Got  questions? Need resources? Email me here citybights@sfgate.com and I will do my very best to help.



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Researchers Examine Impact Of New Autism Diagnostic Criteria

Main Category: Autism
Article Date: 12 Apr 2012 – 1:00 PDT

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Getting an autism diagnosis could be more difficult in 2013 when a revised diagnostic definition goes into effect. The proposed changes may affect the proportion of individuals who qualify for a diagnosis of autism spectrum disorder, according to a study by Yale Child Study Center researchers published in the April issue of the Journal of the American Academy of Child & Adolescent Psychiatry.

The proposed changes to the diagnostic definition will be published in the fifth edition of the American Psychiatric Association’s (APA) “Diagnostic and Statistical Manual of Mental Disorders (DSM-5).”

“Given the potential implications of these findings for service eligibility, our findings offer important information for consideration by the task force finalizing DSM-5 diagnostic criteria,” said Yale Child Study Center director Fred Volkmar, M.D., who conducted the study with colleagues Brian Reichow and James McPartland.

Volkmar and his team performed an analysis of symptoms observed in 933 individuals evaluated for autism in the field trial for DSM-4. They found that about 25 percent of those diagnosed with classic autism and 75 percent of those with Asperger’s Syndrome or pervasive developmental disorder, not otherwise specified, would not meet the new criteria for autism. The study also suggests that higher-functioning individuals may be less likely to meet the new criteria than individuals with intellectual disabilities.

Volkmar cautioned that these findings reflect analyses of a single data set and that more information will be provided by upcoming field trials overseen by the APA. He stressed that it is critical to examine the impact of proposed criteria in both clinical and research settings.

“Use of such labels, particularly in the United States, can have important implications for service,” he said. “Major changes in diagnosis also pose issues for comparing results across research studies.”

Article adapted by Medical News Today from original press release. Click ‘references’ tab above for source.
Visit our autism section for the latest news on this subject. Citation: Journal of the American Academy of Child & Adolescent Psychiatry Vol. 51, No. 4 (April 2012)
Yale University Please use one of the following formats to cite this article in your essay, paper or report:


Yale University. “Researchers Examine Impact Of New Autism Diagnostic Criteria.” Medical News Today. MediLexicon, Intl., 12 Apr. 2012. Web.
22 Apr. 2012. APA

Please note: If no author information is provided, the source is cited instead.

posted by Shell Tzorfas on 14 Apr 2012 at 5:02 am

1 in every twenty-nine12 year old boys in NJ now has Autism, Who are well enough to be in Public School. This was taken from the CDC findings of 1 in 49 for both sexes. These findings are FOUR years old. If they researched children from 2 through 10 the numbers would be far worse. Asperger’s kids were Barely included. Why? Because they usually do not qualify for school services and if what they have impacts their ability to learn then they likely have just plain Autism .A sudden 78% increase can NOT be Genetics.Let’s get to the Point. These kids are injured by the point of a needle that includes Aluminum, mercury, embalming fluid, ether, fetal cells-Peanuts-antifreeze and much more. So now after they have been fully injured, the medical community has the audacity to UNdiagnose and take away what minute amounts of services a few get in the first place? I do appreciate that the research in this article shows the truth, that it will be difficult for many affected kids to get help or a diagnosis leading towards help. What is the Point?

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posted by Carol Fowler on 14 Apr 2012 at 6:56 am

This reminds me of how the state of Ohio handles identification and services for other exceptional learners. Students are identifited as gifted on the basis of a 95th percentile on a norm referenced test or a group IQ score of 127 or higher. These scores are valid for 24 months. SO a student may either be identified specific academic, superior cognitive or both for a 2 yr period. While the state requires identification and parental notification;it does not mandate services for the identified child. Furthermore, when the child is retested 24 months later on a norm referenced test, the child should he not meet the required percentile or IQ score is no longer identified gifted.

Should that child reside in a district that provides services for the gifted and talented, the child would no longer qualify for those services. Hence gifted one day, not gifted the next day.
It is this educator’s opinion who is also a parent to 4 daughters, that once gifted always gifted unless a medical condition affects the brains ability to process and function at pre-condition levels.

The analogy here is that there will be children and adults who exhibit symptoms and functions that today would garner them services as an individual on the ASD, but tomorrow even though those same symptoms and functions exist, the individual would no longer qualify for services under the ASD diagnosis. Yet, there has been no change in the neurochemical functioning of the brain or any other changes to the “wiring” of the brain.

What compelling and significant studies in mumber of participants and quality of data is there that suggests it is in the individuals best interst or it is an educational best practice to create new criteria for the DSM V that will eliminate significant numbers of individuals from receiving appropriate services?

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‘Researchers Examine Impact Of New Autism Diagnostic Criteria’

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Autistic Self Injury, Autism Self Harming Autistic Children

Research into the cause and frequency of autism self harming behavior in autistic children shows that depending on the functioning level of the child and IQ that up to 70% of children with a range of intellectual disabilities are likely to self harm.

Studies into low functioning autism show an increased probability autistic self injury behavior.

Autism self harming behaviors are sometimes referred to as self mutilation, self destructive, or masochistic behaviors. Behavior specialists will sometimes categorize self harming behaviors in autistic children as autistic repetitive stereotypical behaviors, with the proposed difference being at the moment of self injury.

Autistic repetitive stereotypical behaviors can have a very wide range from finger picking which is classed as mild to severe head banging which of cause is serious and will have damaging affects.

The autistic self injury will vary between individuals and will largely depend on the circumstances and environmental input at the time of the self harming autism behavior.

One theory for why autistic children use self harming autism behavior is that of self – stimulation. Autistic children are either classed as being over sensitive or under sensitive to their environment.

One set of repetitive stereotypical autistic behaviors or autistic stimming (hand flapping, rocking, finger tapping, and spinning) is used in under aroused autistic individuals to provide sensory stimulation.

Suitable behavior management strategies can be put used to help control and mange repetitive stereotypical autistic behaviors.

One autism resources is “autism social skills stories”. For example: Jessie is a seven year old autistic child that uses the self harming autistic behavior of finger picking.

Her OT suggested using social skills stories to help Jessie find strategies for dealing with this behavior and a suitable social skills story was put in place to help Jessie control and manage this autistic behavior. 

A summary report on Jessie’s autistic behavior after two weeks showed a vast improvement in Jessie’s autistic self harming behavior after the social skill story had been implemented and reported less incidence of finger picking.

Such autism resources as autism social skills stories are used effectively in controlling and managing autism self harming behaviors. Research shows autistic children respond well to visual support in the form of autism social skills stories.

Autistic behaviors such as autistic stimming can be helped using autism social skills stories.

Immediate download from:


autism social skills stories can be used for a wide variety of autistic behaviors. They can also be used to teach social skills effectively like tooth brushing, visiting the dentis, good eating habits and so on. Get immediate downloads of over 100 social skills stories from www.autismsocialstories.com
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