By Pam Long
With 500 students with autism now in every high school graduating year group in Colorado, parents across the state seek a statewide response in both education and Medicaid that will address the lifelong disability needs of 25,000 affected children and adults. In April of the 2018 legislative session, Colorado parents brought forward CO HB18-1223 Declare Autism Epidemic in Colorado. This bill cited that the 2009 Colorado Autism Commission, which thrice referred to autism as “epidemic” in its executive summary report, had both failed in its primary mission to “identify the number of individuals affected by autism in the state” and failed to request or obtain funding for any of the eighteen service recommendations for the statewide autism population in its ten years of existence. The Autism Commission has dedicated its efforts to “autism awareness” left in the hands of non-profit organizations, while the state of Colorado passively allows 2,900 adults to wait for years on the Medicaid Developmental Disabilities (DD) waiver waitlist. The magnitude of the problem becomes even more alarming when analyzing the 2017 Colorado Dept. of Education disability data which shows 16,000 pre-school and school-age children with developmental delays and autism. Can we agree the time for “awareness” is over, and the time for “action” is now?
Autism as an “epidemic” became the issue of objection for Colorado lawmakers. Colorado statute defines an epidemic as “an increase in a communicable or non communicable disease or condition.” Lawmakers in the House Health, Insurance, and Environment (HIE) Committee alleged that declaring autism an epidemic would stigmatize affected people as having a contagious disease. By definition, autism is a disorder affecting speech, behavior, and social skills. The House HIE committee was unwilling to even consider referring to autism as a “crisis” in an amendment suggestion.
Published Data on Autism
Lawmakers also denied that there is a true increase in autism and clung to unsubstantiated claims of “better diagnosis,” despite expert testimony by two published authors. Mark Blaxill, co-author of Denial: How refusing to face the facts about our autism epidemic hurts children, families, and our future, presented data slides from three data sets (CDDS, ADDM, US Census) on the impending tsunami of children with autism while the state is unprepared to provide facilities or caretakers when they outlive their parents. Dr. Cindy Nevison, Ph.D., University of Colorado, briefed autism prevalence trend data from her landmark (52,000 downloads) peer-reviewed study in the Journal of Developmental Disorders (JADD, July 2018) that analyzed three data sets (CDDS, IDEA, ADDM) and concluded a 1000% increase in autism since 1930. Nevison explained that the increase in autism is not caused by diagnostic substitution (the conjecture that autism was previously referred to as intellectual disability) but rather a true increase to epidemic levels, with autism having a unique set of diagnostic criteria and established as a distinct federal disability reporting category starting in 1991.
Colorado Dept. of Public Health & Environment (CDPHE) on Autism
CDPHE is required by Colorado Rule 6 CCR-1009-7 to monitor, investigate, and report annually on environmental and chronic diseases, to include Autism Spectrum Disorders. CDPHE has never included statewide autism data surveillance in their annual reports, nor included autism as even an “emerging issue” in the state’s health strategic plan. At the HB18-1223 committee hearing, Rep. James Wilson expressed his concerns to CDPHE’s representative with "You don't like the word epidemic. I understand that. It doesn't matter what you call it, we've clearly got a huge problem.” Mr. Chris Wells, of CDPHE, responded, without providing any data sources to reference, that the autism rate remains stable at 1.1%. In CORA responses in the follow-up of the bill hearing, Mr. Wells provided me over a hundred files of CO ADDM, CO SEED, and MMWR autism data, and none of those reports show autism as “stable” at 1.1%. In fact, all of those reports support a near zero autism rate in the late 1980’s (1 in 10,000) and rising steeply to 1% of the population in 2018 (1 in 59), thus affecting tens of thousands of children. Mr. Wells also responded that CDPHE was actively looking at autism risk factors such as genetics, older parents, maternal obesity, and low birth weight. Mr. Wells did not disclose that CDPHE spends millions of dollars on the Colorado Autism and Developmental Disabilities Monitoring Network (CO ADDM) data team, which generates the Colorado autism rate from only the 8-year-old age cohort, and only seven counties, while changing sample counties and changing educational and medical records requirements from reporting year to reporting year, resulting in very unreliable data that shows an underestimate of the Colorado autism rate compared to all other states. CDPHE’s CORA responses show that CDPHE spends zero dollars actually providing services to families affected by autism, beyond a quarterly speaker on “autism awareness” at CANDO support group meetings at JFK Partners at UC Denver. UC Denver also employs the CO ADDM data team.
Lawmakers defer to the testimony of CDPHE and their local partners, and do not require these agencies to provide any data to validate their assertions. To illustrate this, Rep. Janet Buckner asked about diagnostic swapping as an explanation for the rise in autism. Dr. Cordelia Robinson-Rosenberg of CDPHE’s community partner at JFK Partners at UC Denver, and also a member of the unfunded Colorado Autism Commission, replied affirmatively stating that the increase in California autism is mirrored by a decline in intellectual disability. That statement has been demonstrated in many scientific publications to be completely false. The rate of intellectual disability has remained relatively constant over the last 30 years in California as the rate of autism has risen dramatically.
Colorado Department of Education (CDE) on Autism
CDE provided their opinion to lawmakers on an autism epidemic by a letter submitted by consultant Jennifer Mello. The letter disputes CDE’s own disability reporting data of 17 cases of autism in 1992, and 7,111 cases of autism in 2016, which is a 41,729% increase in autism. Ms. Mello claims that Colorado had “flexibility” under strict federal disability reporting categories to report autism under the category of “Physical Disability.” CDE clarified in a follow-up CORA request that the 41,729% increase in autism in Colorado students since 1992 is correct as reported federally, but the districts under CDE report a 1,234% increase when combining the Autism and Physical Disability categories together. This data demands an investigation. How can CDPHE report “stable at 1.1%” while CDE reports either a 41,729% increase or a 1,234% increase? How is a 1,234% increase in ANY disorder not triggering an immediate investigation by the Governor’s Expert Emergency Epidemic Response Committee (GEEERC)? In comparison, one potential case of rabies gets investigated and reported by the GEEERC, and rabies is monitored continually. Colorado has 25,000 cases of autism with projected increases in the preschool age groups as most toddlers and preschoolers are not diagnosed until age five. There is no state agency monitoring and reporting to lawmakers on autism, while annual special education costs are bankrupting local schools at the cost of $6,000 to $13,000 per student with autism annually. Added financial unsustainability was imposed by the Supreme Court ruling in 2017 against Colorado schools as failing students with autism, and setting precedent for parents to ask local districts to pay for private education for autism.
Colorado Dept. of Human Services (CDHS) on Autism
Mr. Robert Lawhead’s, of CDHS and Colorado Developmental Disability Council (CDDC), follow-up CORA responses to his testimony against CO-HB1223 fully highlight the total lack of long term state planning and department coordination for autism. Regarding the Medicaid DD waiver waitlist of 2,900 adults, CDDC endorsed legislation in 2018 to fund 300 additional adults by 2020. By Lawhead’s assessment, “While 300 new resources only represents approximately 10% of the people currently waiting for services, it is a move in the right direction.” And regarding long term residential living for people with autism, Lawhead responded with “We do not advocate for building new residential facilities but advocate instead for fully funding the Medicaid HCBS-DD waiver program which provides funding for community based residential options like host homes and companion models.” Mr. Lawhead did not know there are 16,000 students with autism in the pipeline as reported by CDE data, which makes the funding the Medicaid DD waiver program unattainable without declaring an epidemic and requesting federal funds. It also makes the idea of host families adopting 25,000 adults with autism very unrealistic. 24-hour-care is $70,000 a year per adult, and it would cost $200 million annually to clear the current waitlist of 2,900 adults.
The Autism Society of Colorado on Autism
At the HB18-1223 hearing, a representative for the Autism Society of Colorado opposed declaring autism an epidemic based on a movement called “neuro-diversity.” Neuro-diversity is a belief that rejects the Diagnostic and Statistical Manual of Mental Disorders (DSM) diagnosis criteria for autism, which holds that autism is a disorder with severely life restricting impairments in three areas of language, behaviors, and social skills, with symptoms evident by the third birthday, and requiring a lifetime of support. Instead, the neuro-diverse supporters believe that adults can self-diagnose autism at any point in their lives, even after going to college, having a career, and having a spouse and family. The neuro-diverse supporters portray autism as gifted savants with slight social quirks, and that any legislation to fund autism services is “ableism” and stigmatizing, and instead call for acceptance and equality. They deny the statistics that 76% of people with autism have less than 70 IQ and Adaptive Behavior Scores, and 40% of people with autism are non-verbal as “outdated statistics.” It should be noted that there is a subset of high-functioning autism under Asperger’s Syndrome, but it accounts for only 10% of cases. The President of the Colorado Autism Society, Kathryn Dran, opposed CO-HB18-1223 on the CBS Denver news exclaiming insensitively, “There’s never been a better time to have autism!” In historical comparison, when 16,000 Coloradans affected by HIV/AIDS necessitated the declaration of an epidemic, no groups advocated for “immune deficiency diversity” and the result was funding services, not stigma. Likewise, when obesity and opioids were declared epidemics, no groups advocated for “body fat diversity” or “addiction diversity.”
Colorado State Legislators on Autism
Responding to autism is in your power. You have a desperate plea for immediate investigation from a parent, in the trenches for 14 years, looking for a solution to the high probability of my son with autism being homeless when I die. I testified at the Board of Health, at the SMART hearing with all three health committees, and for HB18-1223. Autism is the Invisible Epidemic that you choose to see or ignore.
Pam Long is a graduate of USMA at West Point and a former Medical Intelligence Officer under NATO SFOR.