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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.

Special education takes a step forward in Egypt

7 Sep

A recent story from the Egypt Today website caught my eye:

Into the Mainstream
‘After decades of virtually no access to education, children with special needs are getting a shot at the regular school system.’

The story details how the Egyptian Ministry of Education is changing its policy towards special needs students. The story gives an interesting view into how special education is handled in what is to me a very different culture.

It is both encouraging and very discouraging at the same time. According to the story, few of Egypt’s special needs students are currently getting any education. About 1.8%. Egypt plans to increase this to about 10% by 2012. So they are increasing enrollment of special ed students a lot, and will still leave about 90% unserved.

As it stands, children with special needs have had practically no access to mainstream schooling. Now, as the MOE moves to open classroom doors for them, families are faced with a new dilemma: will their children be better off integrated into public and private schools, or should they remain in special schools for the disabled?

The idea is to allow kids only into regular education environments. This will obviously limit who is accepted:

Even after training and renovation, schools will not be able to accept all children with disabilities that come to their doors. A prospective special needs student will undergo an evaluation exam prior to admission. To be eligible for a regular school, a student must not have a dual disability, such as visual and hearing impairments or a combined mental and physical disability. His or her Stanford IQ must be higher than 52 points, and his or her hearing impairment may not exceed the diagnosis of moderately severe hearing loss. Under the MOE plan, each classroom will have no more than four special needs students.

I must say I disagreed with the following paragraph:

“If I’m a child with a disability and I’m always around others who also have disabilities, then I’m not challenged and I don’t have a role model,” says Abdel Hak. In regular schools, she says, a child with special needs interacts with other children and picks up some skills through observation and practice.

I hope Abdel Hak learns soon: a child can be challenged and have a role model while in a special education environment.

This story makes me appreciate all the more the people who pushed through special education laws in the United States. Our system is also both encouraging and (very) discouraging. It is certainly not what I think a special education system should be. But, with apologies to those in Egypt, it could be a lot worse.

Ultrasound: “unlikely to increase the risk of ASD”

5 Sep

A couple of years ago I remember a lot of discussion on the groups I follow about ultrasound as a cause of autism. A lot of parents were concerned that they might have done something that resulted in their child’s autism diagnosis.

A recent study in the Journal of Autism and Developmental Disorders looked into the possibility.

Antenatal Ultrasound and Risk of Autism Spectrum Disorders
by Grether JK, Li SX, Yoshida CK, Croen LA..

Here is the abstract:

We evaluated antenatal ultrasound (U/S) exposure as a risk factor for autism spectrum disorders (ASD), comparing affected singleton children and control children born 1995-1999 and enrolled in the Kaiser Permanente health care system. Among children with ASD (n = 362) and controls (n = 393), 13% had no antenatal exposure to U/S examinations; case-control differences in number of exposures during the entire gestation or by trimester were small and not statistically significant. In analyses adjusted for covariates, cases were generally similar to controls with regard to the number of U/S scans throughout gestation and during each trimester. This study indicates that antenatal U/S is unlikely to increase the risk of ASD, although studies examining ASD subgroups remain to be conducted.

The study doesn’t rule out ultrasound completely, but perhaps this will be welcome news to those parents who were concerned.

Is the rate of autism recovery going down with time?

2 Sep

There is evidence that autism recovery is real. At least that is what we are being told on blogs based on data from the latest “National Survey of Children’s Health (NSCH)“.

We’ve already discussed some of the misinterpretations of the NSCH dataset on this site. I had a long post about this question prepared, but let’s just cut to the chase. If biomedical interventions are resulting in more kids recovering from autism, the “recovery rate” would go up with time. Kids born in the early 1990’s, before ideas like chelation and special diets were popular, wouldn’t be recovered at the same rate as kids born in, say, the last 10 years.

This just isn’t the case.  I graphed the “recovery rate”.  Take the number of kids whose parents were told that the kid had autism minus the number where the parents are reporting the child does not presently have autism.  Divide by the total number of kids whose parents were told the kid had autism.  Show as a percentage (click on graph below).

"recovery" rate from the NSCH data

"recovery" rate from the NSCH data

The “recovery rate” is going down. The rate was about 40% for kids born in 1990 but has dropped to below 30% for kids born in 2004.

Note that there is a high “recovery” rate datapoint for birth year 2005. Those kids were 2 years old for the survey and there were very few of them (only 15 kids total compared to about 90 for most birth years). I wouldn’t try to draw any conclusions from that point.

But, what’s the bottom line? The NSCH data don’t support the concept that introduction of “biomedical interventions” are “recovering” kids with autism. If you really wanted to take the data at face value, you would have to say exactly the opposite: the recovery rate has gone down with the growth of “biomed”. I don’t buy that. The easiest explanation is this: older kids have had more time for some medical person to say, “he/she might be autistic”.

Dr. Bernadine Healy talks about vaccines and autism…or does she?

1 Sep

Vaccines and autism: publicity of the topic just got a “shot in the arm” this weekend with a story on Dateline. As part of the story, Dr. Bernadine Healy was interviewed.

Dr. Healy has called for more research into the proposed vaccine-autism link. She has some good credentials (former head of the National Institutes of Health)

Take a look at what she had to say.

I really want people to actually watch her before reading my opinions. I’m very interested in what other people see, untainted by my opinion.

Did you watch? OK, go ahead.

My view: She sounds like a politician on a stump speech. She makes her “constituency” think that she made a commitment when, in fact, she never does.

“…in the area of autism, and in the area of vaccines, there are many many questions that need to be answered and they need a broad base of science.”

Does she ever say, “we need to research vaccines as a cause of autism”? No. She doesn’t. She mentions autism and she mentions vaccines, but doesn’t really put them together.

Another statement, in talking about vaccine safety:

“…it is about understanding if something is happening that we need to address in a small subset”

Her words are very imprecise, letting the reader interpret as he/she will.

“small subset”. Some will hear that and think, “children with autism, that’s the small subset” and the “take away” message will be, “she supports the idea of vaccines causing an epidemic of autism”. It’s possible that “small subset” means a small subset of autistics. In other words, she might be accepting the data that shows vaccines haven’t caused an epidemic of autism. It’s possible that “small subset” is the very small subset of people who are injured by vaccines, some of whom are autistic and some of whom are not. In which case, what she said isn’t controversial at all.

We just can’t tell what she meant from what she said.

And, yet, many would could come away thinking that her statement supports their side.

Perfect politician speak. Very reminiscent of the style Sentator McCain used in his comments courting the autism vote in the last U.S. presidential election.

Dr. Healy has not always been so cautious with her words. When she first appeared on the autism scene, she made accusations against the Institute of Medicine. She also made statements about young children having no risk for Hepatitis B, questioning the need for that vaccine. There are more examples, but these two serve the point: when we make specific statements, we run the risk of being wrong.

The rest of the interview was mostly “mom and apple pie” statements about good communication with parents, pediatricians and the American Academy of Pediatrics.

She also talks about vaccines and how there are “questions that must be addressed”. See what I mean about how that sounds like a politician? What questions must be addressed? The listener is likely to fill in the blank and feel that Dr. Healy made a statement supporting, say, questions about vaccines potentially causing autism.

Contrast Dr. Healy’s non-statements to the statement by the American Academy of Pediatrics on the Dateline website.

August 2009

Statement from the American Academy of Pediatrics to “Dateline”

The immunization schedule is considered the ideal schedule for healthy children. It is designed to stimulate children’s immune systems so they will not suffer illness, disability and death from vaccine-preventable diseases. The recommended immunization schedule is based on the latest scientific research. There is no scientific evidence to support the safety or effectiveness of alternative schedules. Delaying vaccines leaves babies unprotected when they are most vulnerable to vaccine-preventable diseases such as hepatitis B (a liver infection), rotavirus (severe diarrheal disease), whooping cough and bacterial meningitis.

Autism is a devastating, poorly understood neurodevelopmental condition. It is upsetting for families not to know what caused their child’s autism. The American Academy of Pediatrics (AAP) supports additional research to investigate genetic and environmental factors that may affect the developing brain. While it is likely that there are many environmental factors that influence the development of autism, vaccines are not the cause of autism. We know this because many careful and repeated studies show no link between vaccines and autism. Specifically, numerous studies have refuted Andrew Wakefield’s theory that MMR vaccine is linked to bowel disorders and autism. Every aspect of Dr. Wakefield’s theory has been disproven.

The AAP wants parents to have complete, science-based information so they can make the best decision for their child about immunization. The AAP urges parents who have questions about vaccines to talk to their pediatrician. For more information, visit www.aap.org.

See the difference between Dr. Healy’s interview and the AAP statement? The AAP said something concrete. They said that Wakefield’s theory has been disproven. They say that they support additional research into genetic and environmental factors.

Having done so, the AAP will almost certainly have their message picked apart and misinterpreted.

For example, one common attack I would expect to see is “if they don’t know what causes autism, how can they say that vaccines didn’t cause an autism epidemic?” This comes up enough that I have a handy counterexample: I, for one, feel safe in not applying research funding into the “refrigerator mother” theory, even though we don’t know what causes autism. I will go out on a limb and state that it is likely that most autism parents and autistics would agree with me on that. See, one can reject some ideas even without a complete understanding of autism.

What I really expect is for some people to jump on the “environmental factors” statement by the AAP. David Kirby, for one, has made a mini-career out of collecting such statements. Each time it is evidence of a “new” position on the possibility of environmental causes of autism by one group or another, Mr. Kirby jumps on it and adds it to his list.

I guess this hasn’t happened with this statement by the AAP because because this isn’t a new position. For example, this past May they stated, “A complex collection of variables, both genetic and environmental, have been associated with the development of autism spectrum disorders (ASD).”. This statement is a part of the FAQ (frequently asked questions) on the AAP autism website.

I was amazed then that Mr. Kirby didn’t extrapolate wildly on the “environmental” statements by the AAP.He tends to leave it implied that anyone who accepts “environmental causes” of autism is referring to events that happen to young children and not, as is most often the case in the studied environmental risk factors, prenatal events. Mr. Kirby tends to imply that anyone who agrees that there are environmental risk factors likely supports his contention that mercury causes autism.

In other words, he tends to claim support for his ideas even where there is none.

But, enough about Mr. Kirby. At least he sometimes makes definitive statements. Yes, he likes to hide behind the cloak of “what if” statements that are supposed to be “sparking a national debate”. But, he can and does occasionally make hard statements, unlike Dr. Healy in her interview.


The CDC also submitted a statement to Dateline. It too has concrete statements:

August 26, 2009

NBC News
30 Rockefeller Plaza
Suite 325W-1
NY, NY 10112

CDC Statement on Vaccine Safety, Thimerosal and Autism

At the Centers for Disease Control and Prevention we understand that autism and autism spectrum disorders place a heavy burden on many families.

Despite compelling scientific evidence against a link between vaccines and autism, some parents wonder if vaccines could have caused their children to develop autism. The suggestion that MMR (Measles, Mumps and Rubella) vaccine could be related to autism was initially raised in a 1998 article by Andrew Wakefield and colleagues. Several subsequent studies by independent researchers, however, have not found an association. A study that included the same laboratory that was involved in Wakefield’s original studies was not able to replicate the original findings. Concerns have been raised about possible biases in the study by Wakefield, and 10 of the coauthors of the 1998 article have published a formal retraction of the article’s conclusions. A review by the Institute of Medicine in 2004 concluded that the evidence indicates that MMR vaccine does not cause autism.

In early 2000, concerns were raised that thimerosal, a mercury-based preservative that had been used in some childhood vaccines, could cause autism. Numerous studies have found no association between thimerosal exposure and autism. Since thimerosal was removed from all U.S. childhood vaccines by 2002 (with the exception of the flu vaccine), we have not seen a decline in children being identified with autism, indicating that thimerosal is unlikely to be related to autism.

The CDC supports research to better understand the causes of autism and to develop more effective treatments. Early intervention is critical and research is our best hope for understanding the causes of autism. Through collaborations with partners in government, research centers, and the public, CDC is focusing on three areas: 1) understanding the frequency and trends of autism spectrum disorders, 2) advancing research in the search for causes and 3) improving early detection and diagnosis.

CDC places a high priority on vaccine safety and the integrity and credibility of our vaccine safety research. CDC, along with other federal agencies, is committed to assuring the safety of vaccines through rigorous pre-licensure trials and post-licensure monitoring. This commitment not only stems from our scientific and medical dedication, it is also personal–for most of us who work at CDC are also parents and grandparents. We too, are concerned about the health and safety of children.

Frank Destefano, M.D., M.P.H. Edwin Trevathan, M.D., M.P.H.
Director Director

Immunization Safety Office, CDC National Center on Birth Defects
& Developmental Disabilities, CDC

Again, unlike Dr. Healy, the CDC makes definitive statements. On statement I am surprised I haven’t read people pointing out the “burden” statement.

I also am surprised I haven’t heard people jump on some other statements. Specifically, “understanding the frequency and trends of autism spectrum disorders”. That’s a perfect opening for people to claim that the CDC believes there could be a vaccine-caused epidemic of autism.

Most people tend to just equate the idea of the autism rate increasing with vaccines and or mercury. So, if anyone were to say, “so-and-so thinks the autism rate may be increasing”, they usually are trying to imply, “so-and-so thinks that vaccines cause autism”.

Well, guess what, the CDC does think it is possible that the autism rate is increasing. That’s why they are monitoring the autism rate.

But, bringing this back to Dr. Healy. I am on the one hand pleased that she didn’t make her false statements about the IOM or other unfounded comments. On the other hand, I would hope that if MSNBC thought it valuable to interview her, they would have found it valuable to get her to actually say something concrete.

It is interesting to look at the blog post on the Age of Autism blog about this. They show the video, with no commentary other than the title: “Dr. Bernadine Healy Implies Hubris on Part of Docs Who Deny Vaccine Autism Possibility”.

Even they couldn’t pull a concrete conclusion out of this interview. The strongest statement they are left with is “implies hubris”.

If AoA can’t spin this interview into a strong statement, it’s pretty clearly a fairly empty interview.

Loneliness and Social Support in Adolescent Boys with Autism Spectrum Disorders

1 Sep

ResearchBlogging.orgLonliness in boys with ASD’s. That’s the subject of a recent paper in Journal of Autism and Developmental Disorders.

Loneliness and Social Support in Adolescent Boys with Autism
Spectrum Disorders
Mathias Lasgaard, Annette Nielsen, Mette E. Eriksen and Luc Goossens

Abstract Loneliness and perceived social support were examined in 39 adolescent boys with autism spectrum disorders (ASD) by means of a self-labeling loneliness measure, the UCLA Loneliness Scale (third version), and the Social Support Scale for Children. Twenty-one percent of the boys with ASD described themselves as often or always feeling lonely. Compared with 199 boys from regular schools in a national probability study, ASD was strongly associated with often or always feeling lonely (OR: 7.08, p < .0005), as well as with a higher degree of loneliness (F(1,229) = 11.1, p < .005). Perceived social support from classmates, parents, and a close friend correlated negatively with loneliness in ASD. The study, therefore, indicates a high occurrence of loneliness among adolescent boys with ASD and points at perceived social support as an important protective factor.

Somehow I never thought of loneliness as a quantifiable entity. It’s very sad reading about loneliness, even when it is broken down into clinical terms.

The authors describe loneliness as:

Loneliness is an aversive experience that affects an individual’s social, affective, and cognitive functioning. The phenomenon has been defined in many ways, but most scholars agree that loneliness is a subjective, unpleasant, and distressing experience resulting from deficiencies in a person’s social relationships

The ASD boys were chosen from special ed schools, but were considered “high functioning” as rated as having at least five-word sentences. They were compared to boys in regular schools.

The key result, not surprisingly, more ASD kids are lonely than typical kids:

Twenty-one percent of the adolescents with ASD described themselves as often or always feeling lonely and another 38% reported that they feel lonely sometimes. Four percent of the controls described themselves as often or always feeling lonely and another 19% reported feeling lonely sometimes.

This was independent of whether a child was diagnosed autistic, Asperger, or other ASD. ASD kids with 2 or more siblings reported less loneliness. But, contact with peers outside of school and perceived teacher support level do not affect loneliness. Social support from classmates did help reduce loneliness.

Having difficulty making friends was seen to result in more loneliness for boys in regular schools, but, interestingly, was not seen to have an effect on loneliness for the ASD kids.

The authors note that further study is needed to determine if loneliness is attributed to ASD or learning disability.

I would add–how much is is loneliness attributed to being in a separate school? While related to the question of learning disability, I think it is a separate question.

Lasgaard, M., Nielsen, A., Eriksen, M., & Goossens, L. (2009). Loneliness and Social Support in Adolescent Boys with Autism Spectrum Disorders Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0851-z

Autism Research Today

31 Aug

What is really important in autism research today? Believe it or not, the online world may give you a slightly skewed idea of what is really considered important.

Dateline had a special tonight on Autism. I’ve stayed away from it so far, but I saw this additional material on the MSNBC website and wanted to post it here.

It includes intereviews with Dr. Margaret Pericak-Vance, head of the new John P. Hussman Institute for Human Genomics and Dr. Eric CourchesneH of U.C. San Diego.

She is head of a new, $100M center and he is one of the top cited researchers in autism. Dr. Courchesne has been asking important questions and writing important papers since the 1990’s.

The video clip doesn’t go into depth about the research, but it is worth the watch.

Visit msnbc.com for Breaking News, World News, and News about the Economy

New research proposed for diet and autism

30 Aug

LBRB has a record of coming down hard on so-called complementary and alternative medicine (CAM). We support evidence based treatments and therapies. CAM is all too often an opportunity for snake oil merchants to rip off parents and potentially harm their children.

It may be  that some CAM interventions are beneficial. Properly conducted research may provide the data to support the claims for a particular therapy. So far the record is not good. Secretin has been tried and found wanting. Facilitated Communication could not live up to the hype. Holding Therapy was not only wrong it was abusive. Chelation is based upon fraudulent challenge testing that has been dismissed by the American College of Medical Toxicologists.

But that does not necessarily mean that all CAM therapies are bad. It does mean that they lack evidence and only research can provide that evidence. Note that evidence is not the same as the parent testimonials that CAM practitioners display on their websites and in their literature. Evidence is data collected by disinterested researchers whose methods and results are open to scrutiny. This is more reliable thsn testimonials, which may be influenced by all sorts of factors, including the placebo effect, recall bias and good old fashioned wishful thinking.

One researcher in the UK who has taken a scientific interest in CAM for autism is Professer Ann Le Couteur. She knows that lots of parents use CAM therapies and wants to investigate their effectiveness. In particular she is interested in parental and professional attitudes to dietary interventions, probably the most widespread alternative therapy for autism. To this end her department has sent out the following letter which is also available on the NAS website.

The study

Researchers at Newcastle University would like to find out about parents’ and child health professionals’ experiences of autism research and their attitudes to the use of the gluten- and casein-free diet as an intervention in ASD. We are carrying out two web-based surveys; one for parents/carers and the other for child health professionals who support children with ASD and their families. The results of these surveys will help us plan the design of UK research studies into biomedical and complementary and alternative therapies for children with ASD.

Participants

Parents/carers of pre-school or primary school-aged children with a diagnosed autism spectrum disorder, and child health professionals who support children with ASD and their families, are invited to take part.

What happens next?

If you are interested in taking part, please visit our website: PADIA. When you follow this link, you’ll go to a web page that tells you more about the study, and will ask you to enter some details.

We will then send you a letter of invitation with a unique ID number and the link to an information sheet. This information sheet has the link to the web-based survey.

If you would like any more information about this study, please contact:

Professor Ann Le Couteur
Tel: 01912 821 384
Email: padia@ncl.ac.uk

When I saw this my first thought was “What about the parents whose children have grown up? What about autistic adults? Do their opinions and experiences matter? So I wrote to Professor Le Couteur who promptly replied and gave me permission to share her reply.

MY LETTER

I recently received an invitation for parents of young children and health care professionals to complete a questionnaire that will assist you plan the design of UK research studies into biomedical and
complementary and alternative therapies for children with ASD. May I enquire if you are also interested in the opinions of parents of older children, and indeed of the adults themselves? Many of us have attempted to implement these therapies in the past or had them done unto us and our experience should not be ignored.

PROFESSOR LE COUTEUR’S REPLY

Dear Mike Stanton

I quite agree experiences of parents of older children and personal experiences are of great interest to us.

The research survey was funded for parents of primary school aged children only and the child health professionals that support them. However if you or anyone you know would be prepared to give us information about your/ their experiences in the past that would be really interesting. We cannot include the information in the survey but would be able to use the account to add to our knowledge and to inform our grant applications etc.

I also value personal accounts as these add great value to my talks and presentations if I have permission to share the experiences (in an anonymised form) for teaching and conference events

Thankyou for contacting PADIA

Your sincerely

Ann Le Couteur
Professor of Child & Adolescent Psychiatry
Institute of Health and Society
Newcastle University
Sir James Spence Institute
Royal Victoria Infirmary
Queen Victoria Road
Newcastle upon Tyne
NE1 4LP

Tel: 0191 2821398 (University)
0191 2821384 (University Secretary)
0191 2196455 (Clinical Secretary)

So there you have it: an autism researcher who is open to personal accounts from parents, professionals and autistic adults in order to assist her in formulating and designing her research programme into CAM. This is a positive invitation and I hope people avail themselves of this opportunity in the spirit in whch it is proffered.

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Interesting information in the National Children’s Health Survey

28 Aug

The National Children’s Health Survey (NCHS) has a lot of data and I think it’s worth the time to see what sorts of questions and informtion we can get from it. I’ve already discussed data from this a number of times, but these are questions I don’t see other’s asking.

The survey questions and the distribution of the answers for the entire population surveyed can be found here.

I’ll compare data from that document to how the same questions are answered for kids who are identified by the parents as “having autism or an ASD”.

So, going question by question (with me paraphrasing the questions), in no particular order:

Is child using a prescription med (non vitamin)

autistic: 45.7%
all famililies: 21.7

Not surprising that more autistic kids take prescription meds. It would be interesting to know what sorts of medications are common. I can’t find it right now, but I recall a recent paper that showed even higher numbers for adolescents and young adults.

depressed

autistic: 12.1%
all families: 3.4%

I am not surprised, but saddened to see that statistic.

Does the family have medical insurance:
autistic: 95.4%
all families: 92.4%

I’m sort of amazed that the numbers were that high for both groups.

Does the child have some form of state run medical insurance
autistic: 34.5%
non-autistic: 21.6%

Does medical insurance always cover costs?
autistic: 45.3%
all families: 69.5%

I am not surprised that parents have more out-of-pocket expenses for autistic kids. Just the question of whether autistic kids are less healthy (per our recent post) would suggest more out of pocket. More CAM (complementary and alternative medicine), more therapies like speech and OT, all of these would result in more out of pocket expenses for parents of autistic kids.

Has a doctor told you that [child] has a food or digestive allergy?
Autistic: 14.8%
all families: 5.1%

I’m half surprised that this statistic hasn’t been heard more–about threetimes higher food or digestive allergy? Then again, I think many would be surprised to see such a low number as 14.8%.

Again, this is a doctor telling the parent that the child has allergies. I imagine many parents are told this when seeing a DAN doctor.

Does the child have Eczema
autistic: 21.5%
non-autistic: 12.4%

Eczema does come up a lot in online discussions. Not as much as food allergies (specifically gluten and casein).

Are the kids living in a household where the parents are married?
69.4% of families who identified their child as autistic
74.0% of all families who responded.

There is a commonly quoted statistic that autism parents have a divorce rate of about 80%. This doesn’t support that.

This also doesn’t support the idea that 50% of marriages in the US end in divorce, but that is a strange statistic anyway.

did the child have fever or resperatory allergy in the last year
Autistic: 26.8%
general population: 18.0%

Does the child have bone, joint or muscle problems
autistic: 11.9%
total population: 2.3%

I would have expected this to be higher, given the number of kids in OT. Would a gross motor or fine motor problem be categorized as a “muscle” problem? I would think so.

Does the child have epilepsy/seizures
autistic: 7.1%
total population: 0.57%

I hear a lot of different numbers for how many autistic kids have seizures–I’ve heard up to 30% for autistic kids. However, this number (7%) is consistent with data from the California Department of Developmental Services, from what I recall.

Does the child have Asthma
autistic: 12.5%
total population: 8.7%

Does the child have speech problems
autistic: 40.0%
total population: 2.9%

Not surprising that this would be very high, in my opinion.

Does the child have developmental Delay
Autistic: 59.8%
total population: 2.67%

For autistics, the level of developmental delay is reported as:
18.6% mild
26.2% moderate
14.5% severe

it is interesting that 40% of autistic/ASD kids are not listed as having a developmental delay. This isn’t saying that 40% don’t have developmental delays–the question is more complicated than that.

I need to go back and check these data against kids with developmental delays. In other words, a good comparison is autistic kids vs. developmentally delayed kids in order to see if some of the conditions are autism specific or common in the developmental delay population.

Autism and dentistry

28 Aug

I thought this was a good blog post: Autism and Dentistry: Dental Challenges for Families and Treating Dentists. By Darlene Oakley at empowher.com

I don’t want to copy a lot of the post here–I’d rather send you there. One new and cool piece of information for me: I didn’t know about these two organizations:

Special Care Dentistry Association (www.scdaonline.org) and the National Foundation of Dentistry for the Handicapped (www.nfdh.org),

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