Story or nonstory? SacBee: "Autism rates in California public schools jumped 7 percent in 2016"

[proverbialwisdom]

Original reporting, SAC BEE, July 18:

SAC BEE, July 18, "Autism rates in California public schools jumped 7 percent in 2016"

[center]"The increase was especially sharp among kindergartners, where autism cases grew by 17% last year."[/center]

[/center]

LA Times coverage of the story:

http://www.latimes.com/newsletters/la-me-essential-california-20160719-snap-story.html

ESSENTIAL CALIFORNIA
By Alice Walton and Shelby Grad

Good morning. It is Tuesday, July 19. Police descended on a San Mateo neighborhood after receiving reports of a mountain lion in the area. Residents were told to shelter in place, but it was all for naught. The ferocious puma turned out to be a regular house cat. Here's what else is happening in the Golden State:

TOP STORIES

STORIES TO WATCH TODAY

L.A. AT LARGE

POLITICS AND GOVERNMENT

CRIME AND COURTS

EDUCATION

More cases: The number of children with autism in California’s public school systems has increased sevenfold since 2001. That’s about 97,000 students. Officials say the jump can be attributed to better screenings, a broader definition of the autism spectrum and more children being born with the condition. Sacramento Bee

SPOTLIGHT: Appropriate reporting or a failure of journalism? Scroll down, scroll way, way, way, way down.

MORE: http://www.democraticunderground.com/10028030727

[proverbialwisdom]

1. LINK: "Special Education - CalEdFacts" from CA Dept of Education website

http://www.cde.ca.gov/sp/se/sr/cefspeced.asp

The disability categories and enrollment breakdown in California for individuals (newborn through twenty-two years of age) who received special education services in 2014–15 are as follows:

Intellectual disabilities: 43,750
Speech or language impairment: 160,071
Visual impairment: 3,864
Emotional disturbance: 24,214
Orthopedic impairment: 12,293
Other health impairment: 76,122
Specific learning disability: 284,196
Deafness: 3,531
Hard of hearing: 10,325
Deaf-blindness: 116
Multiple disabilities: 6,435
Autism: 90,794
Traumatic brain injury: 1,744

In total over 717,000 California kids were in special education programs in public schools. There were over 6,235,000 kids in public schools, translating to 1 in 9 who were in special ed programs.

Link from post by: Greg | July 20, 2016 at 11:50 AM

[NuclearDem]

2. This is bordering on spammy.

[proverbialwisdom]

4. No, clearly not. The post demonstrates abject UNDERREPORTING of an important 7/2016 CA news story.

Here's another little known detail to contemplate:

http://childrenspecialneeds.senate.ca.gov/
http://sd06.senate.ca.gov/biography

[HuckleB]

24. Your are far too kind.

[still_one]

3. More of the Robert Kennedy anti-vexer bullshit

[proverbialwisdom]

5. Hijack. Stick to the topic, please, or visit the other thread which resembles a food fight now. (nt)

[HuckleB]

27. Everyone knows what your real topic is...

Why can't you be honest?

[womanofthehills]

8. Actually, some countries, like Japan, refuse to give the MMR vaccine

because of too many reported side effects - so they have measles, mumps, and rubella in individual shots - with less reported side effects. Japan said that 1 in 900 children having a severe side effect was too much and changed the way they give their vaccines.

Why Japan banned MMR vaccine

Of the 3,969 medical compensation claims relating to vaccines in the last 30 years, a quarter had been made by those badly affected by the combined measles, mumps and rubella vaccine, they say.

The triple jab was banned in Japan in 1993 after 1.8 million children had been given two types of MMR and a record number developed non-viral meningitis and other adverse reactions.

Official figures show there were three deaths while eight children were left with permanent handicaps ranging from damaged hearing and blindness to loss of control of limbs.

The government reconsidered using MMR in 1999 but decided it was safer to keep the ban and continue using individual vaccines for measles, mumps and rubella.

Read more: http://www.dailymail.co.uk/health/article-17509/Why-Japan-banned-MMR-vaccine.html#ixzz4FGEwCzxA




http://www.dailymail.co.uk/health/article-17509/Why-Japan-banned-MMR-vaccine.html

[proverbialwisdom]

10. Hijack, off topic. (nt)

[womanofthehills]

20. Sorry about that

It's just the MMR is the one that gets linked to autism

[Warren DeMontague]

42. And, there it is.

You're not supposed to openly acknowledge what these threads are really about, silly!

[womanofthehills]

9. Actually Robert Kennedy has represented kids injured by vaccines

The US Government has paid out over 3 billion for vaccine injuries. In other countries, people injured by vaccines can sue the pharma companies, but not in the US. In the US, you have to file your claim through the Health and Human Services Vaccine Injury Compensation Program.

[killbotfactory]

6. Kindergartners? It's probably being overdiagnosed.

There are a whole host of factors as to why a very young child might not act the way people think they should act.

Government Study Suggests Autism Overdiagnosed

Several factors may be contributing to overdiagnosis, researchers said. It could be the result of imprecise screening and evaluation processes or difficulty distinguishing kids with language issues from those with developmental delays.

In some cases, however, parents admitted that clinicians gave their child an autism diagnosis simply because that label would make services more readily available.

https://www.disabilityscoop.com/2015/10/27/government-study-autism/20907/

[proverbialwisdom]

34. 2009: UC Davis MIND Institute study shows CA's autism increase not due to better counting, diagosis.

http://www.ucdmc.ucdavis.edu/welcome/features/20090218_autism_environment/

UC Davis M.I.N.D. Institute study shows California's autism increase not due to better counting, diagnosis

A study by researchers at the UC Davis M.I.N.D. Institute has found that the seven- to eight-fold increase in the number children born in California with autism since 1990 cannot be explained by either changes in how the condition is diagnosed or counted — and the trend shows no sign of abating.

Published in the January 2009 issue of the journal Epidemiology, results from the study also suggest that research should shift from genetics to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California’s children.

“It’s time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California,” said UC Davis M.I.N.D. Institute researcher Irva Hertz-Picciotto, a professor of environmental and occupational health and epidemiology and an internationally respected autism researcher.

Rise in autism

Hertz-Picciotto said that many researchers, state officials and advocacy organizations have viewed the rise in autism's incidence in California with skepticism.

The incidence of autism by age six in California has increased from fewer than nine in 10,000 for children born in 1990 to more than 44 in 10,000 for children born in 2000. Some have argued that this change could have been due to migration into California of families with autistic children, inclusion of children with milder forms of autism in the counting and earlier ages of diagnosis as consequences of improved surveillance or greater awareness.

Hertz-Picciotto and her co-author, Lora Delwiche of the UC Davis Department of Public Health Sciences, initiated the study to address these beliefs, analyzing data collected by the state of California Department of Developmental Services (DDS) from 1990 to 2006, as well as the United States Census Bureau and state of California Department of Public Health Office of Vital Records, which compiles and maintains birth statistics.

Hertz-Picciotto and Delwiche correlated the number of cases of autism reported between 1990 and 2006 with birth records and excluded children not born in California. They used Census Bureau data to calculate the rate of incidence in the population over time and examined the age at diagnosis of all children ages two to 10 years old.

The methodology eliminated migration as a potential cause of the increase in the number of autism cases. It also revealed that no more than 56 percent of the estimated 600-to-700 percent increase, that is, less than one-tenth of the increased number of reported autism cases, could be attributed to the inclusion of milder cases of autism. Only 24 percent of the increase could be attributed to earlier age at diagnosis.

“These are fairly small percentages compared to the size of the increase that we’ve seen in the state,” Hertz-Picciotto said.

Hertz-Picciotto said that the study is a clarion call to researchers and policy makers who have focused attention and money on understanding the genetic components of autism. She said that the rise in cases of autism in California cannot be attributed to the state’s increasingly diverse population because the disorder affects ethnic groups at fairly similar rates.

“Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones. We need to even out the funding,” Hertz-Picciotto said.

<>

[Iggo]

7. Care about kids? Story. Spreading anti-vax bullshit? Non-story. (n/t)

[proverbialwisdom]

11. What? Of course, I did not introduce the second topic here or in the context of the previous thread.

Only detractors have done that, as if reporting on special education in California in 2014-2015 (OP and post #1) could be negated by discrediting me. Ridiculous, actually.

[Warren DeMontague]

12. why don't you tell us exactly what you're getting at, then?

Because dollars to donuts, at the end of this ride there is some shit about Vaccines.

[proverbialwisdom]

14. Tip: Belligerence is an impediment to learning how exceptionally uninformed certain views might be.

The subject is the information presented in the OP and Post #1, period. In the context of this thread any other subject is OFF TOPIC.

Are you not concerned that 1 in 9 children in California's public schools require special education? Over 717,000 children? That autism rates in California public schools jumped 7% from 2014-15 to 2015-16? That the increase was especially sharp among kindergartners, where autism cases grew by 17% last year?

How is it acceptable that this news from the California Department of Education is reported by the SacBee, then subsequently covered only in the LA Times, and only as a single paragraph buried in a long article presenting an overview of news links for July 19?

How can the public be adequately informed when the media coverage is this weak? And if you think this doesn't matter to all of us, you're wrong. That's my point, get it?

[Warren DeMontague]

15. It's still not caused by vaccines.

[womanofthehills]

21. but the CDC does not definitely say that

Dr. Thompson of the CDC says differently and he still works there.

[Warren DeMontague]

25. So you acknowledge that, at the end of the day, that's what this crap is about.

an anti-vax agenda.

People should be honest about what they're trying to achieve and who they are, etc.

[HuckleB]

26. Honesty is not a concern of anti-vaxers, however.

[uppityperson]

17. Expand a diagnosis and more people will fit it. I'm not concerned at what you write because it does

not tell what is really happening. It's one of those lies, damned lies, statistics sort of "facts".

"How can the public be adequately informed when the media coverage is this weak?" Because it is a non-story beyond "diagnosis expanded". You do realize that this is being covered in anti-vax publications, don't you?

[proverbialwisdom]

19. All good? No concerns? Same as it always was? Is that how you remember things during your childhood?

One in nine public school students in California assigned to special education classes in 2014-2015, more than 717,000 children overall. (One in twenty children under five years of age diagnosed with epilepsy. Off topic, sorry.)

Is your observation about who is paying attention a valid reason to remain nonchalant, detached and unconcerned? Or an excuse to avoid cognitive dissonance, like asking WTF is going on?

Right track, wrong track? To anyone who cares about the well being of children this is trending wrong track big time. What if the signal here isn't artifact?

[uppityperson]

23. You seem to be saying agree with your or we'd are uncaring and wrong. "WTF is going on" has been

ID'd as far as autism. Expanded diagnosis, expand what counts as fitting under the diagnoses.

You also seem to be saying no one is noticing this, which is incorrect. It's been noticed and explained. I work with people with severe autism, and know how bad it is. Expanding the range for diagnosis collects many more people, at the peril of those truly in need by taking away the resources they need.

Our of curiosity, since you obviously disagree with expanded diagnosis being the cause of increased #s, why do you think the #s have increased?

[Iggo]

13. I'm talking about the story. All I did was answer your question.

Read it again.

[PasadenaTrudy]

16. Amscray, you.... nt

[ismnotwasm]

18. My third grandson has autism

I don't take kindly to conspiracy theories about the cause,--It certainly was not caused by vaccines--anymore than I take kindly to bullshit CT "cures" for my husband's Multiple Sclerosis.

So what is being implied here?

[Odin2005]

29. I actually am on the spectrum, OP's BS disgusts me.

[proverbialwisdom]

30. I'm sorry to hear that. Do you know that John Elder Robison and Kim Stagliano are friends, actually?

http://jerobison.blogspot.com/search?q=kim+stagliano

http://www.johnrobison.com/
http://jerobison.blogspot.com/

He even posts occasionally on the site where she is Managing Editor.

[Sen. Walter Sobchak]

22. Well if you're calling everything short of impecable socialization in five year olds autism...

Some friends of mine fought their kid's school on this years ago, they were labeling every other kid autistic including their son. Years later it is pretty glaringly obvious he isn't.

[Odin2005]

28. WARNING, OP IS AN ANTI-VAXXER PUSHING FEAR AND HYSTERIA.

[proverbialwisdom]

31. That is false. (nt)

[HuckleB]

32. It is accurate. You know that, and it's not ok for you to pretend otherwise.

[proverbialwisdom]

33. Again, that is false. (nt)

[HuckleB]

35. Oh, FFS. You're not fooling anyone.

We all know what you're doing.

[proverbialwisdom]

36. WEAK RESPONSE, THE DATA STANDS: "Special Education: CalEdFacts" from CA Dept of Education website.

http://www.cde.ca.gov/sp/se/sr/cefspeced.asp

The disability categories and enrollment breakdown in California for individuals (newborn through twenty-two years of age) who received special education services in 2014–15 are as follows:

Intellectual disabilities: 43,750
Speech or language impairment: 160,071
Visual impairment: 3,864
Emotional disturbance: 24,214
Orthopedic impairment: 12,293
Other health impairment: 76,122
Specific learning disability: 284,196
Deafness: 3,531
Hard of hearing: 10,325
Deaf-blindness: 116
Multiple disabilities: 6,435
Autism: 90,794
Traumatic brain injury: 1,744

In total over 717,000 California kids were in special education programs in public schools. There were over 6,235,000 kids in public schools, translating to 1 in 9 who were in special ed programs.

Link from post by: Greg | July 20, 2016 at 11:50 AM

[HuckleB]

38. You keep trying to fool people, but you are fooling no one.

Your response is ludicrous. It has nothing to do with your real reason for posting this.

Everyone knows it.

[proverbialwisdom]

39. You, you, your, your...people, no one, everyone. Yeah, right, got it. (nt)

[LanternWaste]

37. So you allege.

So you allege.

[Warren DeMontague]

41. You are not fooling anyone.

Neither are you convincing anyone.

[Warren DeMontague]

40. Hey, I hear Jill Stein is on the Anti-Vax Train.

Woo woo!

[proverbialwisdom]

43. Off topic, thread hijack. (nt)

[Warren DeMontague]

44. No

everyone here knows what this is about. No one is fooled.

[proverbialwisdom]

45. Forgetting something? Personal attacks fail to actually address the content of posts #1 and #34.

Sidestepping this data will become increasingly impossible. Research this objectively.

According to the CA Department of Education website, 1 in 9 children in public school required special education in 2014-2015, autism rates in California public schools jumped 7% in 2016 and the increase was especially sharp among kindergartners, where autism cases grew by 17% last year.

[Orrex]

46. There was no change to diagnostic criteria during that time?

[proverbialwisdom]

47. INSEL: Burden of proof is upon anybody who feels that there is NOT a real increase here in # of kids

http://pic.twitter.com/yiHBv7yDCa

10:02 AM - 27 Mar 2014

"...the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected."
- Dr. Thomas Insel

Director of National Institute of Mental Health and head of Interagency Autism Coordinating Committee (IACC)

Update: https://techcrunch.com/2015/09/15/alphabet-hires-director-of-the-national-institute-of-mental-health-for-its-life-sciences-team/

http://www.ncbi.nlm.nih.gov/pubmed/19234401

Epidemiology. 2009 Jan;20(1):84-90. doi: 10.1097/EDE.0b013e3181902d15.

The rise in autism and the role of age at diagnosis.
Hertz-Picciotto I1, Delwiche L.
Author information: Department of Public Health Sciences, University of California, Davis, California 95616, USA.

Abstract:
BACKGROUND: Autism prevalence in California, based on individuals eligible for state-funded services, rose throughout the 1990s. The extent to which this trend is explained by changes in age at diagnosis or inclusion of milder cases has not been previously evaluated.

METHODS: Autism cases were identified from 1990 through 2006 in databases of the California Department of Developmental Services, which coordinates services for individuals with specific developmental disorders. The main outcomes were population incident cases younger than age 10 years for each quarter, cumulative incidence by age and birth year, age-specific incidence rates stratified by birth year, and proportions of diagnoses by age across birth years.

RESULTS: Autism incidence in children rose throughout the period. Cumulative incidence to 5 years of age per 10,000 births rose consistently from 6.2 for 1990 births to 42.5 for 2001 births. Age-specific incidence rates increased most steeply for 2- and 3-year olds. The proportion diagnosed by age 5 years increased only slightly, from 54% for 1990 births to 61% for 1996 births. Changing age at diagnosis can explain a 12% increase, and inclusion of milder cases, a 56% increase.

CONCLUSIONS: Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

[Orrex]

48. Insel is wrong; the burden is on the claimant

The claim is that the incidence of autism has increased. It's up to the claimant to show that the increase is actual and not based on shifting the criteria.

For instance, if the claimant could demonstrate the current diagnostic criteria would produce the same apparent number of autism cases reported 15 years ago as was reported using the diagnostic criteria of that time, then that would be a stronger case that the current claim has merit.

If the claimant were serious about the claim, then this would already have been done. Has it been? What was the result?


Additionally, no one is interested in yet another of your Gish gallops. When someone asks you a question, then you should either answer it or not. Cutting and pasting 1,000+ words is not an answer; it's a smokescreen.

[proverbialwisdom]

49. Hey, Insel headed the NIH's Interagency Autism Coordinating Committee (IACC) for 13 years.

His expert opinion on this question cannot be dismissed with any legitimacy simply by your bluster. Get it straight.

Additionally, the cumulative research and analyses by multiple, independent, actual stakeholders who are intensely focused, extremely objective and painstakingly meticulous in their examination of these questions cannot be dismissed indefinitely either, no matter what effort is undertaken to malign their efforts to speak truth to power. To share information that has been solidly vetted? Not a smokescreen at all.

Developing.

[Orrex]

51. I note that you still haven't answered the question

More Gish gallop.


You have nothing to offer on this subject.

[proverbialwisdom]

50. Transcript of testimony before IACC on 4/19/16 by SafeMinds Executive Director Lisa Wiederlight.

...to express concerns over the validity of the autism prevalence data provided by the U.S. Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network, and to recommend moving responsibility for the prevalence data collection and analysis to the National Center for Health Statistics, which conducts the National Health Interview Survey.

IACC Full Committee Meeting Video: https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/april19/#webcast

Transcript of testimony by Ms. Wiederlight:

My name is Lisa Wiederlight. I am a mother to a 15 year old boy with autism. I am also the executive director of SafeMinds, a national, 501 (c)3 nonprofit organization whose mission is to end the autism epidemic by promoting environmental research and effective treatments for people with autism today.

Five months ago, SafeMinds implored this Committee to convene four work groups that will inform the work of the IACC Strategic Plan. I am told that those work groups, Autism and Wandering; Co-Occurring Conditions with Autism; Environmental Contributors; and Caregiver Support, are likely to be formed shortly. For this I am grateful. Today, SafeMinds asks for the inclusion of and consultation with diverse subject matter experts, including, but not limited to, people with autism who are not able to participate regularly in IACC meetings due to the characteristics and/or severity of their autism, caregivers across the country, environmental health experts, toxicology specialists, gastroenterologists, and public safety professionals.

In addition to having quality input into and feedback on its Strategic Plan, the IACC needs high-quality, dependable, and consistent data upon which to make policy and budget decisions. It does not.

On March 31st of this year, the Centers for Disease Control and Prevention announced that autism prevalence has stayed the same as it was in 2012, at 1 in 68 American children. This defies human observation, and befuddles educational and medical professionals. The data comes from the Autism and Developmental Disabilities Monitoring (ADDM) network, which is coordinated by the CDC’s National Center for Birth Defects and Developmental Disabilities, and led by Dr. Coleen Boyle.

The policy implications of using faulty data on autism prevalence at such a high level of prevalence and urgency cannot be overstated. I will go into more specifics, but the data, as collected, represents an underestimation of autism prevalence, which then results in unfunded mandates for such agencies as the departments of Education, Housing, and Labor, among others.

The ADDM’s goal, according to Dr. Boyle’s 2012 testimony in front of the House Committee on Oversight and Government Reform, is to “provide comparable, population-based estimates of the prevalence rates of autism and related disorders in different sites over time.” In this 2012 testimony, Dr. Boyle herself cites the following reasons for the rise in autism prevalence from 1 in 110 in 2009 to 1 in 88 in a March 2012 report. These reasons, as you will hear, are likely not to have abated since the last prevalence estimate her office provided four years ago. They are, in part, from:

- Improved methods for identification and diagnosis
- Increased public awareness

However, these two factors alone are not responsible for all of the increased prevalence we have seen since the early 1990s.

The most current 1 in 68 figure released less than a month ago in 2016, represents children who were born in 2004, who were diagnosed with autism by age eight, in 2012. This data is therefore four years old. The Strategic Plan will guide the IACC for how many years, and it is based on four year old data? Where is the urgency that this crisis so obviously demands?

Notably, the state with the highest prevalence was New Jersey. New Jersey has kept the most rigorous and consistent case ascertainment practices since its inclusion in the ADDM network. The state continues to see an increase in prevalence—rising 12 percent in two years, from 1 in 45 in the 2010 report, to 1 in 41 in the latest report.

The ADDM report chronically underestimates the rate of autism by including sites that only collect medical records, rather than both medical and educational records. Medical records miss a high percentage of autism cases—17.1 per 1,000 are ascertained using both sources, while only 10.7 per 1,000 using medical records alone.

The variability in case ascertainment methodology among catchment areas also threatens the integrity of the data. This includes how sites access records, how medical records are kept, and the quality of the investigators assigned to a site.

We are equally concerned about the court case which will be held in Utah, brought by former principal investigator for the Utah ADDM site, Dr. Judith Zimmerman. Dr. Zimmerman is alleging that the CDC’s ADDM network allowed research misconduct and persistent data errors in their autism prevalence reports, and that she alerted the CDC to these allegations. This raises significant worry about the integrity of the CDC’s ADDM reports.

Another study, the National Health Interview Study, puts autism prevalence at 1 in 45. This estimate is based on data from 2014, two years later than the ADDM compilation. This research is coordinated by the National Center for Health Statistics, which is run by Charles Rothwell. To quote the National Health Statistics Report from November 13, 2015, “Children diagnosed with developmental disabilities typically require a substantial number of services and treatments to address both behavioral and developmental challenges. Measuring the prevalence of these conditions in children aids in assessing the adequacy of available services and interventions that may improve long-term outcomes.”

Improving long-term outcomes and getting the best return on the taxpayer’s investment is what is really most important. Therefore, SafeMinds suggests moving the ADDM to the National Center for Health Statistics so that the research scientists there can compare and contrast the findings of the National Health Interview Study and the ADDM to ensure that estimate of autism prevalence is the most accurate and strongly-supported estimate available to the decision makers at the IACC and elsewhere in the federal government for appropriate resource allocation and better long term results.

Thank you.

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html
https://iacc.hhs.gov/

http://www.democraticunderground.com/10141506618#post13

[TheDebbieDee]

52. Maybe they need to check the lead levels in the drinking water

in Sacramento.... Maybe they should check the lead levels in the drinking water in ALL of the US cities!

Lead in the water was a leading cause in the fall of the Roman Empire and lead in the drinking water in the US might explain the high number of Trump supporters!

[proverbialwisdom]

53. "Kids have federal rights to 'free & appropriate education,' but no mandate to anything after that."

http://www.rollingstone.com/culture/features/lukes-best-chance-one-mans-fight-for-his-autistic-son-w431012

Luke's Best Chance: One Man's Fight for His Autistic Son
More than a million children in America are the autism spectrum. What happens when they come of age?

By Paul Solotaroff
July 27, 2016

...And overhanging those are my master emotions: the panic and confusion about what's next. Three autumns from now, Luke will age out of school and go hurtling off the cliff called "transition." The day he turns 21, he will lose his legal mandate to the government-funded care for disabled kids. Something will replace this – a shared room in a state-run group home, or a terrifying arrangement in which a flat is rented for him and his staffer leaves the moment Luke's off to sleep.

And so – the clock ticking – I set out last winter to seek a third way for him: a place or a program for profoundly impaired kids that provides them more than shelter and hot meals. The search, however selfish, had a messianic bent. There are more than 1 million children in America with autism, and 3 million more with other intellectual or developmental disabilities. Many, if not all, of their mothers and fathers are kept awake nights by two worries: How can I give my child a life worth having, and where will she/he live when I'm dead? There is no peace for us till we've settled those questions, not an inch of separation from the gnawing dread that we'll leave them alone and undefended.

<>

Forty percent of autistic children never learn to speak. Roughly half engage in aggressive behaviors, either against their caregivers or themselves. These aren't likely to be among the 10 percent with so-called savant gifts who go on to do great things in arts, science and engineering. Nor are they the fraction, substantially larger though uncounted, whose high-end functioning allows them to work and find their own way in the world. These are the other kids, the sizable percentage who don't make sudden strides or outgrow symptoms. They are the boom generation of the cognitively disabled: kids like mine, who are taught, at great expense, to fold a towel and eventually tie their shoes.

And then they turn 21 and an odd thing happens: Collectively – poof – they disappear. "Kids have federal rights to 'a free and appropriate education,' but no mandate to anything after that," says Desiree Kameka, director of community engagement and housing network for Madison House Autism Foundation, a matrix of housing and service providers for people with intellectual and developmental disorders. "Fifty thousand autistic kids are aging out a year now, and the great majority go home and get no support: no job training, therapy or socialization."

As adults, they must apply to their states for help and clear a series of tall hurdles to get it. State agencies are supposed to assess them while they're still students for the care they'll need as adults, but often fail to do so or set the bar so high that few qualify for Medicaid-funded help. That's because it costs at least $2 million to support an autistic person with intellectual disabilities over a lifetime, and states are responsible for roughly half the tab for any adult they support. (The other half is paid by federal Medicaid.)

Without calling it such, states quietly ration care by placing the mentally impaired on waiting lists. In states like Texas, Ohio and Florida, the wait period for a Medicaid slot can be several decades long. In New York, that list is 12,000 deep. "There are almost 5 million adults with intellectual disabilities, and barely 20 percent get any funding [for residential support]," says Kameka. "They just sit around, regressing and getting sicker."

<>

Anne Dachel: "What Will Happen to Adult Children with Autism? Actually it's the WRONG QUESTION. We need to be asking the people in charge of health care more than one that only gets a vague, shoulder-shrugging answer. Instead, this is what authorities should be forced to respond to:

'Why aren't there services already in place for the 1,000,000 young adults with autism who will be aging out of school in the next two decades? ...If it's all just better accounting of the disabled, then they should be able to show us where the 40, 50, and 60-year-olds with autism are.

Even if they have another label, they would still require care, so where are they? Where are autistic adults just like Luke living currently?'"