Friday, January 20, 2017

What Constitutes a Free and Appropriate Public Education for a Autistic Children?

The Supreme Court is set to clarify FAPE this session
In a case argued before it last week, the U.S. Supreme Court is considering a ruling that could strengthen, or at a minimum, clarify what defines the Free and Appropriate Public Education (FAPE) promised to students with disabilities in federal law under the Individuals with Disabilities Education Act (IDEA). This is a subject near-and-dear to my heart, and was the topic of my doctoral dissertation at the University of Southern California.

In the case currently before the Court, Endrew F. v. Douglas County School District, the question presented is “whether the ‘educational benefit’ provided by a school district must be ‘merely more than de minimus’ in order to satisfy the FAPE requirement.”

I have never studied Latin, but I’ll go out on a limb and loosely translate de minimus as “the minimum”. What parent of a disabled child—or any child, for that matter--wants to think the bare minimum is an acceptable educational standard?

As a little background, IDEA, a renamed follow-on to the 1975 Education of the Handicapped Act, was itself modified in 1990 to extend eligibility to students with autism. Prior to this, autistic children were left to languish with no programs available to them through the public schools.

In trying to achieve the lofty goal of providing a free quality education to students with disabilities, the federal government pledged to cover 40% of the additional costs for special education. However; in my research I could not determine the actual level of federal funding has ever exceeded 18%. In 2014, approximately 15.3% of the cost was provided through federal funds, representing a significant shortfall to the states.

FAPE is defined under IDEA as special education and related services that are provided at public expense under public supervision and direction with a plan for that education laid out in an Individualized Education Program (IEP).

Related services in current law are quite broad, and defined as speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation—including therapeutic recreation, social work services, school nurse services designed to enable a child with a disability to receive a FAPE as described in the IEP, and counseling services, including rehabilitation counseling, orientation and mobility services. 20 U.S. C. § 1401(26)(A).  
Apparently, dolphin therapy is a big thing in Kazakhstan and Tatarstan
I find it interesting that Behavioral Therapy doesn’t appear in this rather exhaustive list of services—could “therapeutic recreation” be extrapolated to mean horseback riding or dolphin therapy? This is not to say these are not effective for some children, but there is less (if any) published research supporting their use as evidence-based practice in comparison with the studies demonstrating the success of Applied Behavior Analysis (ABA), or similar techniques in providing measurable cognitive improvement in autistic children.

I point out this exclusion because many parents have complained that schools will not allow for ABA to be specifically called out in their child’s IEP, although Physical Therapy, Occupational Therapy and Speech Therapy services are literally defined by the number of minutes the child is to receive per quarter. I would bet the rent that financial implications are the reason for the omission of ABA, which for severe children like my son, should be provided 35 – 40 hours per week.

Although several courts have ruled ABA must be part of the plaintiffs’ IEPs, the omission of Behavioral Therapy has been interpreted at times to mean schools are not required to offer it despite being generally regarded as the gold standard of care for children with autism. This is significant and at the heart of the case—remember the Latin term de minimus used in the question before the Supreme Court? For children with disabilities—in this case, autism—is there a minimally acceptable standard of education or is there a requirement to educate a child to their potential?

Predictably, parents of special needs children say, “Yes”, but are often surprised to find current law is not in their favor. In the seminal case, Board of Education of the Hendrick Hudson Central School District v. Rowley, the Supreme Court held that while the state must provide an education that is “reasonably calculated to enable the child to receive educational benefits,” (Rowley, 458 U.S. at 206-07), the goal of IDEA was to provide “appropriate, not optimal, special education…” Further, the Court said “…courts many not substitute their notions of sound educational policy for those of the school authorities” (Rowley, 458 U.S. at 198, p. 206). This ruling would seem to allow a great deal of latitude to educator’s to determine the child’s needs—which necessarily must be balanced with the resources available.  

Rowley coined the term, “Basic floor of opportunity”, and has been used extensively in deciding subsequent court decisions involving FAPE cases. The Rowley decision has been interpreted to mean schools are required to provide students with disabilities access to “an appropriate education”—could it be any more vague than this?—but not the best possible one. An analogy often seen when discussing Rowley is Cadillac versus a Chevy…in other words, the minimum acceptable, aka, de minimus.

But who could possibly argue with giving students with disabilities the best education possible?

Given the limited resources schools have, it is not surprising there is another side to this argument.
ABA is an evidence-based effective treatment for autism
ABA has been shown to effectively treat children with autism, but to be effective in severe cases, a child must receive between 30 – 40 hours per week of one-on-one ABA services. The cost of these services (which have historically been denied by health insurance) are quite expensive and out of financial reach for most families. Additionally, according to the Centers for Disease Control, medical expenditures for individuals with autism were 4.1 – 6.2 times greater than for those without an autism spectrum disorder. The sheer expense of raising an autistic child results in parents pressing schools for increased service levels.

Students with autism also use more services than children covered under different disability categories and use a wide array of services. In addition to Behavioral Therapy, Occupational Therapy, Physical Therapy, Psychological Counseling and Speech Therapy are quite common at a minimum. Since services cut across several areas of professional expertise, it can be difficult for schools to staff all specializations to meet demand.
It's not hard to spot the trend here...
Couple that with the rapidly rising prevalence rates of autism, and it doesn’t take a rocket scientist to realize there is far more demand than supply.

In California, the number of public school students with an autism diagnosis has risen seven-fold since 2001, according to the latest special education data from the California Department of Education, the Sacramento Bee reported in July of last year. There was a 7% jump from the 2014 – 2015 and 2105 – 2016 school years. The increase in kindergartners with autism jumped 17% overall.

Assuming similar increases in most states, and it’s clear where public school special education costs are headed.

For those of you who think educating these kids to make them as independent as possible is a waste of your tax money, consider this: a 2015 study that appeared in the Journal of Autism and Development Disorders estimates the economic costs of autism for 2015 to be $268 Billion in the United States, rising to $461 Billion by 2025 if prevalence rates remain flat. If the increase observed over the last decade continues, autism’s costs to society will exceed $1 TRILLION by 2025.
From Psychology Today
And as expensive as it is to educate a child with autism, one thing is for certain. These Children with Autism will become Adults with Autism. In my home state of Hawaii, Dr. David Fray, then the Department of Health Developmental Disabilities Division Chief testified at a 2014 hearing that his department served 300 adults with severe autism, with the cost of each individual ranging between $200,000 to a whopping $900,000 per year.

Who do you think pays these costs? The insurance companies—nope. You, the taxpayer.
Pay for the Chevy for the Lamborghini later

So I ask you—should a Free and Appropriate Public Education for an autistic child be a Cadillac or a Chevy? Because if it’s the Chevy, taxpayers will be paying the equivalent of Lamborghini taxes to provide care to the flood of autistic adults into the social system. 

Wednesday, May 18, 2016

Autism and Nitrous Oxide—Just Say NO?

First isolated in 1772, Nitrous Oxide was in use in dental practices by the mid 1800s.
Awhile back Ryan was pressing his cheek into his arm, my arm, my face, anything he could find. I was concerned that he was seeking pressure to alleviate pain from a cavity or worse, so began searching for a pediatric dentist who sees special needs kids. I located a practice in my town and was able to make an emergency appointment.

I went to the practice’s website to check their protocols for dealing with kids like my son—language impaired and minimally-verbal and homozygous for an MTHFR polymorphism (see my blog at for more info on MTHFR). Listed in their behavior management tab was the routine use of Nitrous Oxide (NO—an abbreviation; chemical formula N2O), although N2O should be considered an emphatic “NO” for kids on the spectrum).

Because I know of two parents whose children developed autism post-anesthesia, I’ve done some reading on the subject and have found copious amounts of research that demonstrate some forms of anesthesia are contraindicated for autistic kids—or anyone with MTHFR polymorphisms. Unlike a pathogenic mutation (one known to cause disease), a polymorphism is a variant within a gene that does not necessarily affect its function. In research articles, I've seen MTHFR polymorphisms affecting anywhere from 12% - 70% of the study population, depending on geography and ethnicity, so clearly MTHFR is not rare and the possibility of its presence in an autistic child--or anyone--should not come as a surprise.

It concerned me that a dental practice specializing in treating children with autism didn’t take the time to learn about potential serious adverse events posed by an anesthesia they routinely use to manage autistic patient care, but consider that Autism Speaks, probably the best known autism advocacy organization funded a $3.4 million grant to “train dentists on the special sensitivities and strategies needed to care” for autistic kids. On their website, Nitrous Oxide is discussed as a “generally safe anti-anxiety medicine” for an autistic child to receive during a dental appointment.
What particularly concerns me is that this piece was written by a Pediatric Dentist and a Director at the University of Colorado School of Dental Medicine. Is it only me who is bothered by the fact that potentially dangerous misinformation is being taught to future providers of dental care—and our dental schools are receiving funding to further propagate this misinformation?

The article also says, “It is important to know that dentists generally don’t receive training in the use of…sedation and anesthesia during standard dentistry education.”

Good to know. How often do we simply accept the word of the person in the white coat on what is safe for our children, who frequently have MTHFR polymorphisms, B-12 deficits and mitochondrial dysfunction? How many dentists, or MDs for that matter, are so much as conversant in these areas? From my experience, not many but we assume they have learned all of this in medical school.

Although generally regarded as relatively innocuous, research on the use of Nitrous Oxide has shown very real risks in its use, particularly in the pediatric population, those with MTHFR polymorphisms, and children with autism. Selzer (2003) reported the neurologic deterioration and death of a child who was anesthetized twice with Nitrous Oxide and attributed the child's death to the administration of Nitrous coupled with the MTHFR defect. Patients "with even subclinical deficits of vitamin B12 are at increased risk for the development of myeloneuropathy" (Pratel, 2007) and symptoms may not appear until days to weeks after exposure to nitrous oxide (Baum, 2008).

That symptoms may not appear concomitantly with the administration of anesthesia is also an important point. There is a clear bias where medical errors are concerned that if the patient didn’t die on the table, all is well. Any subsequent problems are a mere coincidence.

Further, Chen et al (2013) found leukocyte (disease-fighting white blood cells) and DNA damage following administration of Nitrous Oxide. This led to increased probability of wound infection. A quick search yielded a number of research articles positing the potential for Nitrous Oxide to cause elevated homocysteine concentrations that could lead to post-operative cardiovascular problems in clinical studies (Savage, 2014; Nagele, 2008).
Although this piece has focused on N2O because of the prevalence of use in dental practices, general anesthetics are also associated with lowered IQs, learning disabilities and behavioral issues (Jevtovic-Todorovic, 2013; Flick, 2011; Loepke, 2008). In fact, Jevtovic-Todorovic (2013) concludes, "Based on presently available evidence, it is becoming clear that regressive behavioral changes in children exposed to general anesthesia are most common in those exposed before the age of 4 years, which coincides with the time period of rapid brain development in humans." 

The purpose of this piece is not to frighten, but to inform parents of potential anesthesia risks that may be unknown even by their dentist or MD. Because our kids frequently undergo procedures requiring anesthesia, parents of autistic children especially should know their child's MTHFR and B12 status (much easier today with the advent of 23 and Me or and should make sure the anesthetist is aware of possible complications so a suitable anesthesia can be chosen. 

1) Baum, V. C. (2007). When Nitrous Oxide is No Laughing Matter: Nitrous Oxide and Pediatric Anesthesia. Pediatric Anesthesia; Vol 17: 824-830.
2) Chen, Y., Liu, X., Cheng, H. K. et al (2013). Leukocyte and DNA Damage and Wound Infection after Nitrous Oxide Administration: A Randomized Controlled Trial. Anesthesiology; Vol 8, No. 6: 1322 – 1321.
3) DiMaggio, C., Sun, L. and Guohua, L. (2011). Early Childhood Exposure to Anesthesia and Risk of Developmental and Behavioral Disorders in a Sibling Birth Cohort. Anesthesia and Analgesia; Vol 113, No 5: 1143 – 1151.
4) Flick, R. P., Slavica, K. K., Colligan, R. et al (2011). Cognitive and Behavioral Outcomes after Early Exposure to Anesthesia and Surgery. Pediatrics; Vol 128, No. 5: 1053 – 1061.
5) Hollmen, A., Joupilla, R., Koivisto, M. et al (1978). Neurologic Activity of Infants following Anesthesia for Caesarian Section. Anesthesiology; Vol 48, 350 – 356.
6) Ing, C., DiMaggio, C., Malacova, E., et al (2014). Comparative Analysis of Outcome Measures Used in Examining Neurodevelopmental Effects of Early Childhood Anesthesia Exposure. Anesthesiology; Vol 120: 1319 -1332.
7) Jevtovic-Todorovic, V. (2013). Functional Implications of an Early Exposure to General Anesthesia: Are We Changing the Behavior of Our Children? Molecular Neurobiology; Vol 48: 288 – 293.
8) Loepke, A. W., Soriano, S. (2008). An Assessment of the Effects of General Anesthetics on Developing Brain Structure and Neurocognitive Function. Anesthesia and Analgesia; Vol 106, No. 106: 1681 – 1707.
9) Nagele, P. et al (2008). Influence of Methylenetetrahydrofolate Reductase Polymorphisms on Homocysteine Concentrations after Nitrous Oxide Anesthesia. Anesthesiology; Vol 109: 36 – 43.
10) Praetel, C. (2007). Nitrous Oxide: Neurotoxicity. Complications in Anesthesia, Ch 18: 69 – 71.
11) Savage, S. and Ma, D. (2014). The Neurotoxicity of Nitrous Oxide. Brain Sciences, Vol 4: 73 – 90.
12) Selzer, R. R., Rosenblatt, D. S., Laxova, R., and Hogan, K. (2003). Adverse Effect of Nitrous Oxide in a Child with 5, 10 Methylenetetrahydrofolate Reductase Deficiency. The New England Journal of Medicine; Vol 349: 45 – 50

Saturday, April 30, 2016

Autism Is

Now that Autism Awareness Month is over, I thought I would muse about what autism is here in our Hale. I’ve seen many feel-good pieces of the so-called autistic kid making the three-point basket at the buzzer to win the game…or graduating from college with honors…or painting Rembrandt-quality portraits...or the Sesame Street version of autism, manifested by a new and slap-happy puppet named "Julia".  I decided I would jot down a few thoughts about what autism is to me, and so many others.

All of these are faces of autism...just not the kind I live with...

Autism Is:

  • Not being able to use the bathroom for even less than a minute without the terrifying thought that your non-verbal child is escaping, unable to clearly say even his name.
  • Feeling your heart pound out of your chest when you realize your child is not in the house, knowing he does not respond to his name when called.
  • Describing your child and what he was wearing to mall security.
  • Being too afraid to send your child to school because of its inability to provide a 1-1 therapist to ensure not only your child’s education, but his safety throughout the day.
  • Knowing your non-verbal child is completely vulnerable to abuse.
  • Watching your child scream in pain, unable to tell you where it hurts…or if it hurts.
  • Finding your child eating inedible items, such as the plastic from the handlebars of his bike, pieces of wood, the case to his iPad, or particularly disturbing—used kitty litter.
  • Opening the car door to let your child out with a body block in place to ensure he can’t bolt into traffic…holding his hand in a death grip when crossing the street.
  • Having countless items broken or ruined. Finding iPads in the pool or phones in the toilet is not an uncommon occurrence.
  • Realizing your imagination is finite when it comes to the things your child can do that can cause him grave injury or death.
  • Fearing your child could fracture his skull when throwing his head back onto the floor when in the throes of a meltdown.
  • Seeing your child tremble and shake uncontrollably and worrying he could be developing a seizure disorder.
  • Sleeping with your ever-growing child in your bed just so you know where he is and that he is safe.
  • Cooking with all sorts of unusual ingredients to accommodate food allergies and sensitivities to nearly every food and spice.
  • Having a teenage daughter who dearly loves her brother but at the same time is embarrassed by his behavior and sometimes resents there is little time for her needs.
  • Wondering who will care for your child when you are no longer here.

Autism is...
  • Isolating…your friends and family are completely unable to understand the reality you live with and you quickly realize most prefer idle chit chat to hearing about an Autism Day-in-the-Life, stories that frequently include poop or a meltdown. You find yourself in close on-line friendships with other autism parents, most of whom you will never meet.
  • Frustrating when you hear constantly how it is a psychiatric condition and is is a serious medical condition and is epigenetic. 

Autism is an all-encompassing, relentless and heartless beast. It is pain and suffering and grief for a lost child with a future lost. It is the realization that in all likelihood, your child will outlive you, and you are not completely sure that is a good thing.
Gosh, isn't autism just great?

Autism is not a gift; it is not “differently-abled”; it is not a cute puppet or animated character, and it is certainly not something to be celebrated with blue lights or human interest news stories. As long as the media portrays autism as the quirky genius child who just lacks social skills, there will never be true autism awareness.