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Are autistic kids in the foster care system being over medicated?

8 Sep

Who should we as a society be watching out for more than kids with disabilities who are in foster care? They are kids. They are disabled. They don’t have their parents to advocate for them. They are our responsibility once they enter into the foster care system.

What if they are being over medicated?

One subject that comes up a lot in the online autism community is the use of psychotropic medication on autistics. Note that the following is my opinion and not from the paper: medications, including psychtropic medications, have their place and can be beneficial, but great care and monitoring must be taken to insure that they are appropriately used. Psychotropic medications should not be used as chemical restraints.

That is why I was very interested when I saw that this paper was going to be published in Pediatrics: State Variation in Psychotropic Medication Use by Foster Care Children With Autism Spectrum Disorder.

The paper has been out for a while but I couldn’t blog it right away. I wanted to take the time to do this paper justice. In the end, I don’t know if I have as I’m trying to find a good “voice” for this post. I keep switching between trying to give an uncolored presentation of the data and being outraged.

Yes, outraged.

The paper authors are David M. Rubin, MD, MSCE, Chris Feudtner, MD, PhD, MPH, Russell Localio, PhD, and David S. Mandell, ScDd.

If you are a regular reader of this blog, you may know that I have a great admiration for Dr. Mandell and his group. He asks important questions, often about groups like autistic racial/ethnic minorities or about autistic adults. Groups I consider to be the underdogs in the struggle for recognition and services in the autism communities.

Who could be more of an underdog than disabled kids in foster care?

One of the reasons the authors give for studying autistic kids in the foster care system is:

Second, beyond the cumulative impact of trauma on psychiatric symptoms after maltreatment, children with ASD in foster care are particularly vulnerable to the social and psychological disruptions that foster care placements can create, such that an excessive variation in the use of psychotropic medications between states may indicate problems in the ability of different foster care systems to achieve placement stability for these children or adequately provide for their well-being.

My read on that–autistic kids are more vulnerable to being traumatized by the foster care system, and the states using more meds may be worse at being able to care for these kids.

The authors list a number of factors that could play into this, including lack of resources and lack foster parent or caseworker training. One big factor–the possibility that these kids are frequently moved around. This is hard on all kids, but is obviously going to be especially tough on ASD kids.

The objective of the study was:

The objective of this study was to compare on a national cohort of children with autism spectrum disorder (ASD) the concurrent use of >=3 psychotropic medications between children in foster care and children who have disabilities and receive Supplemental Security Income, and to describe variation among states in the use of these medications by children in foster care.

They are looking at kids getting three or more psychotropic medications at a time.

Psychotropic medications include:

neuroleptic, antidepressant, stimulant, anticonvulsant/mood stabilizer, anxiolytic, and hypnotic agents. Lithium was categorized with the anticonvulsants.

What did they find? For starters, 20.8% of autistic kids in foster care were using three or more classes of psychotropic medications. This double the number of kids who were classified as having a disability (10%).

I could see people arguing that by the nature of the disability, autistic kids might be expected to use more psychotropic medications. Or, that kids in foster care might be more likely to use multiple psychotropic medications. The authors acknowledge this, but point out that:

Nevertheless, Although one might expect the overall use of psychotropic medications to be higher for children in foster care than for other children, state-to-state differences in the average use of medication by their children, although expected to vary to some degree randomly, would not be expected to vary excessively unless system-level factors were exhibiting a high level of influence on such use independent of children’s needs.

My interpretation: there is no obvious reason why the use of psychotropic medications should vary much from state to state. There may be some statistical variation, but each state should be pretty close to the average.

That is, unless there are “system-level factors” which have “a high level of influence on the use of psychotropic medications independent of the children’s needs”.

My interpretation: if there is a variation by state, something other than the needs of the children is likely to be causing it.

And, yes, they did find a state-to-state variation in psychotropic medication use:

Forty-three percent (22) of states were >1 SD [Standard Deviations] from the adjusted mean for children who were using >=3 medications concurrently, and 14% (7) of the states exceeded 2 SDs.

Statistically, they would expect 2 states, not 7, to be more than two standard deviations from the average.

OK. My guess is that this point most people’s eyes are starting to glaze over. 14 states instead of 2 are more than two standard deviations away from the average in terms of foster care autistic kids using 3 or more psychotropic medications. Not exactly a sound byte you can take to your congressman, is it?

How about this, in some states over half of the autistic kids in foster care are getting more than 3 psychotropic medications. Half of the kids. Or, how about this–the state-to-state variation in the raw numbers vary by a factor of 10.

Yes. In some states about 5% of the kids are getting three or more psychtropic medications, while in others it is as much as 60%.

Take a look at the figure below (click to enlarge). Pay special attention to the figure on the left, which is the raw data.

Figure 2 from paper on use of psychotropic medication on foster autistic kids

Figure 2 from paper on use of psychotropic medication on foster autistic kids

The raw data show the huge variation in use of psychotropic medications by state.

Why do the raw data and the adjusted data differ so much? The adjusted data is controlled for other diagnosed clinical conditions. These include depression, bipolar disorder, anxiety disorder, attention deficit disorder, conduct disorder, schizophrenia and mental retardation.

ASD kids are more likely to have other diagnoses if they are in foster care. 32% of ASD kids have another diagnosis, while 54% of ASD kids in foster care have 1 or more additional diagnoses. They are more likely to be given medications as well. This is shown in Figure 1.

Table 1 from paper on state variations in medication of foster care ASD kids

Table 1 from paper on state variations in medication of foster care ASD kids

Again, my read on this: A study like this can’t discern why ASD foster kids have more diagnoses and get more medication. It could be that these kids actually have more conditions and need the medications. It is possible that the trauma of the foster care system is affecting these kids greatly. It is also possible that some kids are being given extra diagnoses in order to justify the medications.

The authors note this as quoted below:

Furthermore, we are concerned that the true magnitude of variation might be larger than we report, because our method of analysis adjusted conservatively for other psychiatric conditions listed in the children’s records; if these diagnoses were not accurate (as has been suggested by others)[ref 15] and were instead recorded as a means to justify treatment with medication, then our analysis might have underestimated the true extent of state-to-state variation.

I am very glad they included the raw data in this case. It highlights the big potentiality that there is a bigger state-to-state variation than in the adjusted data.

Seriously, why would ASD foster-care kids in Arizona be more likely to have a second (or third or fourth) diagnosis than the similar kids in Tennessee?

There is a lot more in this paper. But as one final note, here is a comment about the youngest kids in the study:

Finally, we also note that younger children in foster care were proportionately using more medication; as many as 1 in 8 children aged 3 to 5 years in foster care was receiving medications from >=3 psychotropic classes in this sample from 2001

As I mentioned at the outset: who is more vulnerable than a disabled child in the foster care system? For Americans like myself, the kids in this study are our responsibility.

It looks to me like we are failing them.

Penn looking for Post Doc in Autism Services Research

4 Aug

There is a great need for more and better research into services for autistics.   At the same time, there aren’t that many groups looking at services.

That’s why I was pleased to get the following job announcement in my email today. I’m glad to see more research and more people being brought into the field.  The announcement is for a post-doc position at U. Pennsylvania on “Interstate Variation in Healthcare Utilization among Children with ASD”.

This job is to work with David Mandell’s group, with the contact being Lindsay Lawer.  Name sound familiar?  She was first author on the paper Vocational Rehabilitation and Autistic Adults, which I blogged.

I don’t know if anyone will find the job from this blog. But, then again, I want as many good people as possible pulled into researching questions important to the autism community. So, here is the job posting:

University of Pennsylvania School of Medicine

Postdoctoral Training Fellowship in Autism Services Research

The Center for Mental Health Policy and Services Research (CMHPSR) invites applications for one- and two-year post-doctoral fellowships in children’s health services research, with a specific focus on the organization, financing and delivery of care to children with autism spectrum disorders. The fellowship is funded through a research grant from the National Institute of Mental Health entitled, “Interstate Variation in Healthcare Utilization among Children with ASD (5R01MH077000).” This study combines national Medicaid claims data, information on local healthcare and education resources, and state-level policy data to examine associations between policies and healthcare delivery to children with autism.

Fellows will receive training in health policy and services research methods and in the clinical presentation and care of children with autism. Training activities include intensive mentorship from a multi-disciplinary team of faculty, participation in didactic courses and lecture series, clinical observations, and guided research activities.

We seek applications from persons with a PhD or equivalent in psychology, sociology, public health, economics, social welfare, or other related fields. Preference will be given to applicants with strong statistical skills and those with previous experience analyzing administrative data. Knowledge of children with autism or other psychiatric/developmental disabilities is preferred but certainly not required.

Applications will be accepted throughout the year. Recent graduates and those seeking to enhance their skills in new areas are welcome to apply. Applications should include: 1) Cover letter and CV; 2) List of degrees, dates of conferral, focus of study & institutions; and 3) Current and permanent contact information (address, phone number, e-mail). Please e-mail complete applications to Lindsay Lawer at

For further information, please view our web sites at and

(note: edited to correct who the principle investigator is on this project)

Autism and Gastrointestinal symptoms: two new studies

28 Jul

Autism and poop. You hear those two words in the same sentence a lot on the net. People have been asking for studies on whether autistics have a higher incidence of gastrointestinal (GI) problems for a long time. Well, two papers came out in the last week with answers…and many parents are not happy.

The two papers are:

The early stool patterns of young children with autistic spectrum disorder

by B Sandhu, C Steer, J Golding, A Emond of the University of Bristol


Incidence of Gastrointestinal Symptoms in Children With Autism: A
Population-Based Study

by Samar H. Ibrahim of the Mayo Clinic.

The Bristol group’s study came out last week. Given that the Mayo Clinic study was on the way, I figured I’d wait and blog them both at the same time. Actually, I considered not blogging them at all. These papers are more nails in the coffin for Andrew Wakefield’s hypothesis that MMR causes “autistic enterocolitis” and the belief by many that this drove much of the “autism epidemic”. But, tired as that story is, the question of whether autistics have GI problems at a higher rate is important and worth discussing.

The Bristol study has free pdf access. Not so the Mayo Clinic study: abstract only, but I have a copy. Rather than go through the studies in detail (if you are that interested you will likely read the paper for yourself), let’s just look at the results and conclusions sections of the abstracts:

Bristol group:

Results: Comparison of the ASD and control group during the first 3.5 years of life showed no major differences in stool colour or consistency, or in frequency of diarrhoea, constipation, bloody stools or abdominal pain. The ASD children had similar stool frequency up to 18 months, but there was a trend for ASD children to pass more stools at 30 months (OR 3.73, 95% CI 1.11 to 12.6; p=0.004) and at 42 months (OR 6.46, 95% CI 1.83 to 22.7; p,0.001), although only three children passed more than 4 stools/day. Repeating the analysis on only those cases diagnosed as having classical childhood autism resulted in very similar findings.

Conclusions: During the first 42 months of life, ASD children had a stool pattern that was very similar to that of other children, apart from a slight increase in stool frequency at 30 and 42 months. There were no symptoms to support the hypothesis that ASD children had enterocolitis.

Mayo Clinic:

RESULTS: Subjects were followed to median ages of 18.2 (case subjects) and 18.7 (control subjects) years. Significant differences between autism case and control subjects were identified in the cumulative incidence of constipation (33.9% vs 17.6%) and feeding issues/food selectivity (24.5% vs 16.1). No significant associations were found between autism case status and overall incidence of gastrointestinal symptoms or any other gastrointestinal symptom category.

CONCLUSIONS: As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism.

Or, to put in a single sentence: there is no evidence that children with autism have GI problems at a greater rate than the general public.

How about repeating that with emphasis: there is no evidence that children with autism have GI problems at a greater rate than the general public. They are not saying that there are no children with autism and GI issues. Quite the contrary. You wouldn’t know that to read some comments on the internet about these studies.

I’m a little surprised by these results. No, I don’t think that Wakefield was right. But, I wouldn’t be surprised if children with autism have other medical concerns at higher rates. Also, there were two abstracts from IMFAR 2008 that stuck in the back of my mind.

In the first, a team from the University of Connecticut presented a study suggesting that GI issues may be more common in children with children with ASD’s (but at a similar rate to children with other developmental delays).

No evidence for higher rates of gastrointestinal problems in young children with ASDs versus those with other developmental delays

Conclusions: In this sample of young community-based children with ASDs and other developmental delays, no significant group differences in parentally reported feeding problems and gastrointestinal symptoms were found at age two or at age four. Most published research has been conducted at specialty GI or DD/ASD clinics with older children. The results of this study suggest that their findings may not be applicable to young children or to children evaluated in community settings. While GI problems may be increased in children with developmental disorders, we found no evidence that they were specific to autism spectrum disorders.

The second abstract (which later became a paper that was discussed on this blog): David Mandell’s group presented a paper suggesting that a significant fraction of adults hospitalized with schizophrenia diagnoses might actually have autism:

Evidence of autism in a psychiatrically hospitalized sample

Their IMFAR presentation (and later published paper) showed an increased number of GI problems in their adult group. 36% of their adults had GI problems vs. 23% of the general psychiatric hospital population.

Unfortunately, these latest studies are getting the usual “online-autism-parents” community welcome. It follows the same pattern as vaccine/autism research:

a) Ask for studies to be done
b) Studies are done
c) Disagree with the data
d) try to slime the authors

Is it a surprise to anyone that some researchers have opted out of working on autism?

(note: minor edits were made shortly after publishing this article)

Autism and Insurance

3 Mar

ResearchBlogging.orgOne of my favorite autism researchers is a guy named David Mandell. The reason is simple: he just asks good questions.

For example, he studied Vocational Rehabilitation and compared the results for autistics and non-autistic adults. There’s a guy looking at issues that will matter to me all too soon, and already matter to a lot of people already (people all too often forgotten even within greater the autism community: adults).

He looked at adult populations in psychiatric hospitals and found that many adults diagnosed with schizophrenia may be autistic.

Now he has addressed a big question: how much would adding insurance mandates for autism increase the premiums?

This question comes up a lot. For example, in California one of the big questions has been how can Kaiser get away without providing insurance coverage, even though California has an autism insurance mandate (AB88).

The YouTube video is about the first person to win coverage for therapies like Speech, Occupational and ABA from Kaiser:

Kaiser said this will “Significantly increase the cost” of insurance, with “their actuaries” estimating would be $5 to $7 per member per month.

As an aside, the Kaiser person in this meeting was dodging the question, and it is annoying that the interviewer let her do it. The question isn’t about how much it will cost, but the fact that California already mandates that the insurers cover the therapies and that kaiser is avoiding it’s legal responsibility.

As another aside–this is what insurance is for. We pay a little bit to share the risk. If it costs us all a little bit so that some small group gets help when they need it. We don’t question it when we are talking about, say, therapies for a stroke victim or someone in a bad accident. Why do we question it when it comes down to children with developmental delays?

Pennsylvania recently passed a mandate requiring autism insurance coverage with a $36,000 cap per year. Dr. Mandell works in Pennsylvania and used his state as an example in his paper, Quantifying the Impact of Autism Coverage
on Private Insurance Premiums.

That’s a RBQ (really big question) that comes up a lot when people are working on getting autism insurance mandates in their state: what will the cost be? Insurers, as one could imagine, claim the costs will be big. (again, avoiding the question of whether it is the right thing to do).

I won’t go into the details of the model Dr. Mandell’s team used. It was actually pretty straightforward, just as you would probably expect. Instead, let’s take a look at results. Figure 1 shows the increase in insurance premiums if autism therapies are covered.

Figure 1 from paper

Figure 1 from paper

The y-axis is the percent increase in insurance premiums, and the x-axis is the average expenditure per child with autism (in $1000’s). The model gives estimates for average expenditures from $10,000 to $36,000 (the cap in the Pennsylvania insurance mandate). Estimates are given for 3 different autism prevalences: 2.0 per 1000, 4.0 per 1000 and 6.7 per 1000. Note that 6.7 per 1000 is the same as 1 in 150.

Take a look at the highest estimate: $36,000 per child, 1 in 150 prevalence. Increase in insurance premiums? 2%. Yep, 2%.

Or, in the words of the study authors:

Even in the unlikely event that treated prevalence were to rise to the accepted community prevalence of 1 in 150 children, and per capita expenditures rose to $36,000 per year, the increase in the family contribution would reach $6.53 a month, or $78.31 per year

This may be the same amount as the Kaiser actuaries claimed. They claimed about $5-7 per “member”. Usually “member” means the primary insured (I.e. the parent whose job gives the insurance coverage). If, instead, they mean $5-7 per every insured family member, then Kaiser’s estimate is likely about 4x higher than prof. Mandell’s team’s calculation.

Prof. Mandell’s team recognizes that this $78.31 per year is likely an overestimate.

To that extent, the estimates presented here may overestimate actual increases to premiums, given that some healthcare expenditures would remain the same but now would be associated with an ASD diagnosis.

One reason they give is that many children with autism may already be receiving insurance paid medical treatment, but under a different diagnosis. I.e. doctors may be avoiding the autism label in order to get reimbursed. So, for some kids and some therapies, an “autism” mandate may just shift the costs already being paid by the insurance companies from some other diagnosis to autism.

Another reason why this estimate may be low comes to my mind, even though it isn’t discussed in the paper. I know this is anecdotal, but medical expenses are likely highest for younger kids. That’s when the OT, ST, and ABA type therapies will be most common. It doesn’t make sense that the average expenses would be the same for older kids as for younger kids. So, when they calculate based on $36,000 per child per year, they are likely overestimating the expenditures for the older kids (say ages 10-20).

Another possible cause of over-estimating the expenditures. When they estimate for the full CDC prevalence (1 in 150, or 6.7 per 1000), they are including all ASD’s. People with, say, Aspergers or PDD-NOS have significant challenges, no doubt. However, my guess is that they do not require the same level of medical expenses as someone with autistic disorder. So, by assuming the prevalence for all ASD’s, Dr. Mandell’s group may have overestimated the expenses.

Now, it is worth noting that when one includes ABA in the picture, $36,000 per year may not cover everything. A 20 hour week program could cost more than $36,000.

But, leave all of that out for now. Take the high end estimate and ask, will a 2% increase in premiums to make such a big difference? I know there is a risk of this discussion getting sidetracked into an ABA discussion. But, consider adding 2 sessions a week of speech therapy and/or 1 session a week of OT to a young autistic kid’s life. Think of the difference that could make. These are life-long benefits. Isn’t that worth something comparable to, say, the amount of insurance premiums we pay to cover heart surgeries or other very expensive medical interventions for adults?

Or to put it another way: if my insurance company said, “Sure, we can give your autistic kid these therapies now. But, if you ever have a heart attack, you are going to die on the table because we won’t pay for heart surgery.” I’d sign on the bottom line. No, I am not asking everyone to make that choice, or to sacrifice their own benefits for other people’s kids. But, isn’t improving the life of a young child worth at least as much as what we spend to improve the life of older adults?

James N. Bouder, Stuart Spielman, David S. Mandell (2009). Brief Report: Quantifying the Impact of Autism Coverage on Private Insurance Premiums Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0701-z

This paper has also been discussed in the Translating Autism blog, which is where I found out about it.