Archive | March, 2009

Autism And Divorce

8 Mar

What is the divorce rate among autism families?

Let’s set aside the fact the this is a very poorly worded question, and let’s just go with the notion that is likely to be pondered by typical peeps on the street – what is the divorce rate among couples who have a child (or children) with some sort of autism spectrum ‘disorder’ diagnosis?

Many bloggers have apparently attempted to look somewhat earnestly at the question – and they often come up empty handed:

Lisa Jo Rudy
“But so far as I can tell, having researched the topic in all the usual places plus a few more (personal connections to reearchers in the autism community), there is no basis for these claims.”

Kristina Chew
“While I have often seen the figure of 80-85% referred to, I have not found a good source for this figure.”

Patricia Robinson
“I can’t find a study that shows that rate.”

But for everyone of those who don’t turn anything up, there appears to be a glut of what looks more and more like internet urban legend similar to the following:

On Oprah
“The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation’s largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end.”

I have news for Autism Speaks – 100% of all marriages end, eventually.

In all practicality, there are probably way too many internet discussion forum threads, blog articles, and statements from anti-autism advocacy organizations to really quantify, so I’m not even going to pretend to try. Heck, this is probably one reason this particular urban legend persists – the fallacious logic of appeal to popularity can be strong with the masses.

Let’s just round out that fallacious logic, of truth due to popularity, with a comment from botulinum toxin injection-loving Jenny McCarthy, which is really not much more than ascribing importance to her personal experience (appeal to anecdote).

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

Source

Well if Jenny believes it, it must be true (and especially so, since she apparently said this on the Oprah show).  😉

Okay, enough already. It’s clear that there is probably a lack of real quantifiable information “out there” about divorce among families with autistic children.

However, Easter Seals (in conjunction with the Austism Society of America) did look at the question (quite recently I might add: July, 2008 – Report Published in December, 2008) as part of a larger “Living With Autism” study. You can download the report (registration required) here.

Even autism super sleuth, Kim Stagliano, over at AoA noted this ‘research’ when it dropped (apparently whining about unsurprising content):

“Click HERE to read more useless information that any parent of an autistic child would have told you for a large coffee and 15 minutes of respite time. Is this what we can expect from the partnership of ASA and Easter Seals?”

Kim obviously couldn’t be bothered with some of the report’s details, really didn’t care, or just skimmed the media story, and didn’t even read the actual report (personally, I’m voting for this possibility as likely). Of course it’s also entirely possible that Stagliano’s absence of mention about the divorce rate information in this survey, is due to lack of interest in the subject, or some other reason altogether.

Pleasantly surprising however, following the AoA post, is a small, yet more astute portion of commentary on AoA (yes, you read that correctly), authored by “Gale”:

It also sheds light on an often misreported urban legend of higher divorce rates for families with autism concluding “Families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third say their divorce had anything to do with managing the special needs of their children.”

Good on Gale for adding a little to the story here!

So what numbers were actually reported for divorce rates by Easter Seals?

No Special Needs (N=866) 39%
ASD (N=1573) 30%

30% ??? Not only is that 25% lower than the families with no special needs children (the ‘control group’) in this survey, it’s nowhere near the mythical 80% number.

But let’s be clear here. The Easter Seals report, while perhaps interesting, is not a scientific study.

While it is a fairly large survey, and one that contains a sizeable ‘control’ group, it has problems that make it very limited in its ability to lend support for conclusions about reality.

First of all, there is an obvious likelihood of selection bias. The survey respondents were solicited via an e-mail invitation from Easter seals, ASA, or Harris Poll Online, which means the respondents were likely to be already involved (to some degree) with at least one of those organizations (enough to be on some sort of contact list), and regular internet users. The survey respondents may, or may not be truly representative of parents with ASD children. The ‘control’ group may not even necessarily be representative of the parents of children with no special needs (the U.S. divorce rate for married couples with children is probably closer to the U.S. average of 48%).

There is evidence of one possible effect of such selection bias, and that is that this survey’s demographic profiles are not consistent with the most current autism epidemiology at all. A full 55% of the parents of ASD children were reported to be parents of autistic children, as opposed to 45% of the parents whose children were diagnosed with PDD-NOS or Asperger’s. This is fairly divergent from the current descriptive epidemiology which puts Autism at about 33% of the total diagnoses, and 67% for PDD-NOS and Asperger’s combined. Such a skewing toward autism diagnoses could represent any number of things (diagnostic inconsistency for example), but I think it’s certainly possible that selection bias (specifically, “self selection”) is at play here – e.g. parents who are already connected in some way to Easter Seals or ASA, may simply be more likely to be the parents of children with an autism diagnoses, and parental participation in such groups by parents of children with PDD-NOS and Asperger’s diagnoses may be considerably less, because affiliation with such organizations simply may be a lower priority for those parents. If this is the case, it would inadvertently exclude representation of a significant portion of the question’s target parent population. If the question’s target population is not representative, is the information accurate? It’s hard to know.

In the context of a sense of scientific rigor, there just isn’t much here. Surveys, and parent reports are just that, reports. As an example, diagnoses were not confirmed with any standardized and normed instruments that I can see. And, to be fair, scientific answering of the divorce rate question wasn’t really an objective of this survey in the first place.

I realize that a skeptical look at both the urban legend of 80% or higher divorce rates and the reported lower divorce rates from the Easter Seals/ASA survey doesn’t really provide any kind of clear conclusion. There will be those who believe that anti-autism advocacy groups like Autism Speaks have some sort of authority on the subject, and they probably won’t see anything wrong with the perpetuation of what looks more like urban myth for pity. There may also be those who believe that parents of ASD children are less likely to divorce (based on this survey, or their own beliefs), ascribing some sort of family-strengthening magic to having special needs children in and of itself.

As for me, I tend to think the actual divorce rate among autism families is probably pretty close to whatever the average is for all families. All families, and all marriages, have sources of difficulty, conflict, and compromise. They all have good too. Is there any reason to think that parents of ASD children are really that much different than most parents when it comes to divorce overall, one way or the other? So far, I haven’t seen any good scientific evidence to make me think so.

Some readers may think of me as one of the Evil Neurodiverse League of Evil Bloggers, and be wondering why I wouldn’t jump on an opportunity to say that having an autistic child is some awesome family-strengthening thing that makes a man more happily married than a father with typical children. I’m sorry to disappoint in this regard – while possible, and undoubtedly true for some, the science just isn’t out there to support the notion that such a statement is applicable to couples with autistic children in general. If you were hoping for something potentially more romantic, or something as equaly tragic (and real) as an 80% divorce rate among autism parents, I recommend:

Dr. Horrible’s Sing Along Blog.

IACC Strategic Plan: Good for us?

6 Mar

By ‘us’ I mean my idea of what the neurodiversity community is.

The IACC released their strategic plan for the future direction of autism research yesterday. This is the basic plan that will form the basis of US (and probably world) autism research for the next 10-20 years. It sets out what it thinks the problems are, what should happen to address those problems and what specific research targets should be set to help address those problems.

So, is it good for us?

On one hand it is. In some places the document makes a clear distinction between the need to address the disabling issues that autism can bring and leaves aside cure language:

It is critical for research to identify the methods and approaches that can be used to prevent the challenges and disabilities of ASD.

Cool. Fine by me. And yet later on in that same paragraph:

Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected.

Hmmm. Possibly less good. I don’t even really quibble at the ‘reducing the degree of severity’ phrase but prevention? Even researchers as established and august as Simon Baron-Cohen and Tony Attwood have suggested this is not such a great idea. I also don’t believe its a great (or necessary) idea.

There’s lots of good talk about support and education for adults and the need to recognise that autism is not a childhood condition. Amazing that such talk is needed when adults clearly make up the larger percentage of the autism population.

I’m not sure this is a cure-based document. I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.

And so we turn to the ‘v’ word. Vaccines are given fairly short shrift in the plan. I didn’t think so at first. When I read this paragraph I was dismayed:

To address public concerns regarding a possible vaccine/ASD link, it
will be important over the next year for the IACC to engage the
National Vaccine Advisory Committee (NVAC) in mutually informative
dialogues. The NVAC is a Federal advisory committee chartered to
advise and make recommendations regarding the National Vaccine
Program. Communication between the IACC and NVAC will permit each
group to be informed by the expertise of the other, enhance
coordination and foster more effective use of research resources on
topics of mutual interest. Examples of such topics include: studies of
the possible role of vaccines, vaccine components, and multiple
vaccine administration in ASD causation and severity through a variety
of approaches; and assessing the feasibility and design of an
epidemiological study to determine whether health outcomes, including
ASD, differ among populations with vaccinated, unvaccinated, and
alternatively vaccinated groups.

This is in section III under the heading ‘what needs to happen’. As I say at first I thought this was terrible. But then I read it again and noticed that what the plan is actually saying is that the IACC and NVAC should talk about these things. They’re not committing money to them.

Vaccines in fact feature nowhere as a short or long term objective in the whole plan and are mentioned again once as a possible research opportunity for people to keep an eye on any developing science.

Overall its a mixed bag. Good on vaccine stuff, good on recognition of need for services, good for recognition of adults but ambiguous at best on its intent for the idea of curing autism.

Advocacy Success: NIMH Use of Stimulus Money Includes Services-Research

5 Mar

If you’ve read what I’ve written on the IACC process, and been able to get past my annoyance with the political maneuverings, you know that I’ve had great hope for the research into areas involving services and adult issues.

Given that, you can imagine that I was quite pleased to get this email from Ari Ne’eman of ASAN (the Autistic Self-Advocacy Network), discussing recent RFA’s (Requests for Applications) for research topics in specifically these areas.

Hello,

Recently, the National Institute of Mental Health released several Request for Applications (RFAs) on services-research topics relevant to autistic people and our families as part of a broader effort to identify NIMH’s priority areas for use of stimulus funds. The RFAs utilize funds specifically allocated under the recently passed American Recovery and Reinvestment Act (aka: the Stimulus bill). As you may be aware, the Autistic Self Advocacy Network and the broader autistic and disability communities have been lobbying for increased representation of services-research and bioethics issues in the NIH research agenda for some time. We’re pleased to share with you these RFAs, which hopefully will yield research that will have a positive impact for our community.

04-MH-104 Access to services by individuals with autism and their families. Engage well-characterized subjects and families in existing autism research activities in preliminary studies exploring variations in access to and use of services, identification of targets for services interventions, and exploration of how variations in service use affect family functioning in diverse populations. Contact: Denise M. Juliano-Bult, M.S.W. 301-443-3364, djuliano@mail.nih.gov

02-OD(OSP)-104* Ethical Issues in the Translation of Genetic Knowledge to Clinical Practice. Genetics and genomics have great promise for the development of personalized medicine, yet the ethical, legal and social implications of both the research and application of genetic and genomic knowledge and technology are far reaching. Studies are needed to better understand the factors that influence the translation of genetic information to improved human health and the associated ethical issues. Examples of studies include those to address ethical issues related to broad sharing and use of new genetic information and technologies for research to improve human health, human subjects protection in genetic and genomic research, the identifiability of genetic/genomic information and how our understanding of identifiability is evolving, return of research results and incidental findings to subjects, alternative models of informed consent for broad data sharing for research, and the impact of intellectual property (IP) issues on development of new technologies. OD(OSP) Contact: Abigail Rives, 301-594-1976, rivesa@od.nih.gov; NIMH Contact: Jean Noronha, Ph.D., 301-443-3367, jnoronha@mail.nih.gov

05-MH-101* Leveraging Existing Healthcare Networks for Comparative Effectiveness Research on Mental Disorders and Autism. Existing large integrated healthcare networks are needed to more efficiently conduct large-scale effectiveness trials in “real-world” patient settings. The NIMH solicits individual or collaborative, linked grant applications from researchers with experience conducting studies within large integrated healthcare delivery systems to develop and test infrastructure to efficiently conduct trials on the effectiveness of treatment, preventive and services interventions to improve care for people with mental disorders and autism. Applicants can propose studies to 1) demonstrate the ability to identify, recruit and enroll large patient populations into clinical trials, 2) harmonize electronic medical record data across multiple integrated systems for research use, 3) pool data for common analyses, and 4) build capacity for the collection and storage of biologic material. Contact: David Chambers, D.Phil., 301-443-3747, dchamber@mail.nih.gov

05-MH-103* Collaboration with AHRQ Comparative Effectiveness Research Program
In FY09 and FY10 the Agency for Health Research and Quality (AHRQ) plans to support research grants (PA-09-070) on comparative effectiveness of clinical treatments and services as authorized in the Medicare Prescription Drug, Improvement, and Modernization Act (MMA) Section 1013. MMA section 1013 mandates two mental health categories: Depression and other mental health disorders; and Developmental delays, attention deficit hyperactivity disorder and autism. NIMH is interested in funding ancillary studies including but not limited to: 1) studies on the comparative effectiveness of important new or existing technologies; and 2) assessment of the comparative effectiveness of treatments that are commonly administered to children but have been evaluated for safety and effectiveness in adult populations. Two year studies will contribute to successfully implement the mental disorders components of MMA Section 1013 by utilizing AHRQ networks ( e.g. EPCs, DEcIDE, CERTs, PBRN, ACTION, etc) to generate information for health care decision-making. Contact: Agnes Rupp, Ph.D., 301-443-3364, arupp@mail.nih.gov

04-MH-105 Developing interventions and service delivery models for the transition to adulthood. Conduct pilot studies to develop and test developmentally appropriate, evidence-based prevention interventions and service delivery models for youth with who are at high risk for, or experiencing severe mental illnesses who are transitioning to adulthood. Studies would propose strategies to address discontinuities in service systems and health care financing. Contact: Joel Sherrill, 301-443-2477, jsherril@mail.nih.gov

Furthermore, NIMH also released the funding of the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan as an RFA. ASAN has been active in lobbying for the inclusion of quality of life oriented research in the IACC’s priorities since this IACC’s inception in 2007. While having both positive and negative components, the IACC Strategic Plan includes services- and quality of life-research components, including research on meeting the needs of autistic adults. It can be found below.

04-MH-101* Autism: Addressing the challenge. Target research gap areas identified by the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research, including biomarkers, novel interventions, and new tools for screening, among other topics. Contact: Ann E. Wagner, Ph.D., 301-443-5944, awagner@mail.nih.gov

We encourage you to transmit this information to your contacts in the research and scientific communities, encouraging them to apply for funding for projects that will positively impact the lives of autistic people while working with the self-advocate community to ensure inclusive and participatory models of research, as we practice through our partnership with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Please feel free to e-mail us at info@autisticadvocacy.org with questions on ASAN’s research advocacy and how you can get involved. If you are a researcher, interested in interfacing with ASAN and our research partner AASPIRE on research priorities, design and implementation, we encourage you to contact ASAN Board Member and AASPIRE Project Co-Director Dora Raymaker at dora@aaspireproject.org.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

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.

More bad Kirby spin

1 Mar

And it is pretty weak this time, so I’ll make it brief.

David Kirby has a new blog post up on the Age of Autism.

David Kirby: US Health Officials Back Study Idea on Vaccinated vs. Unvaccinated Children – Will Media Take Note?

He reports on a meeting of the National Vaccine Advisory Committee and their consensus statement. Mr. Kirby quotes the Concensus Statement:

As they stated in a draft “consensus statement”:

“(There is) a strong desire to study the health impact of the immunization schedule, potentially through a ‘vaccinated vs. unvaccinated study’. Outcomes to assess include biomarkers of immunity and metabolism, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and learning disabilities. The inclusion of autism as an outcome is desired”

Implying that the NVAC has a “strong desire”.

Oh, wait, he didn’t exactly quote, he changed something into (There is). He provides the original, so read and compare:

Public and stakeholder engagement activities have identified a strong desire….

Yeah. It isn’t NVAC who has the “strong desire”, but, well, the organizations Kirby represents (and may be paying him).

Kirby then throws in some of his boilerplate: story ideas he wants others to do.

It isn’t even good spin anymore.

Newer Entries →