Archive | August, 2009

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.

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),

Are more rich kids autistic?

28 Aug

That is the question researchers at the University of Wisconsin studied in a recent paper in the Wisconsin Medical Journal: Socioeconomic Disparity in the Prevalence of Autism Spectrum Disorder in Wisconsin.

The brief report looked at the data used in the 2002 CDC prevalence study that reported 1 in 150 children are diagnosed with autism in the U.S.. The data are collected through the Autism and Developmental Disabilities Monitoring (ADDM) Network.

Here is one of the tables
:

Prevalence vs SES for Wisconsin

Prevalence vs SES for Wisconsin

What’s it say? Basically, if you are wealthy or have a high level of education, your kid is much more likely to be diagnosed autistic.

The authors are pretty limited in what they can say. They didn’t look into the “why”. That they did say was this:

Although the positive association with SES reported here is consistent with early observations of autism and some previous epidemiologic studies,2-3,5 the reason for this association and the potential role of SES differences in access to health and educational services for ASD cannot be determined from the data available.

and:

Further research is also needed to examine whether the association reported in this paper is a result of differential access to health services, other sources of ascertainment bias, or SES differences in the risk of developing ASD.

Do I think that kids of wealthy parents are really 2.5 times more likely to *be* autistic? No. But, are they more likely to *get* a diagnosis? It sure looks like it.

I am not surprised. There are very large disparities by geography (state to state, rural vs. urban) and by ethnicity in much of the CDC’s ADDM network data. I was surprised that the disparity by socio-economic-status was so large.

Univeristy of Miami to get $20M for autism research

27 Aug

The John P. Hussman Foundation has pledged $20 million to the University of Miami’s Institute of Human Genomics.

Mr. Hussman has supporting and personally working with Dr. Margaret Pericak-Vance and Dr. Jeffery Vance of the Institute of Human Genomics at the University of Miami. The Institute will be renamed the John P. Hussman Institute for Human Genomics.

The research goal of the Institute is to “… discover the genetic factors that contribute to the cause of autism and related disorders.”

Mr. Hussman runs the Hussman Funds. He is also the father of a 15 year old autistic son.

Mr Hussman is quoted as saying:

“I don’t expect that autism will be cured,” Hussman said. “And to some extent, I’m uncomfortable with the notion of a cure because it refers to the desire of people with autism to be something different. But it could help with intervention when something starts to go wrong.”

also,

“I am convinced that the research under way at the institute will lead to further breakthroughs in our knowledge of autism,” Hussman said in a telephone interview. “Simply put, I don’t expect that autism will be cured, but I do expect that this research will lead to interventions that will significantly improve the lives of children and adults with autism.”

Are autistic kids less healthy?

27 Aug

This is a question that comes up a lot: is the general health of autistic children lower than, say, typically developing children or children with other developmental delays?

Actually, few people make the comparison to other developmental delays, but it is worth doing.

The National Survey of Children’s Health gives us some information to address this question. It is not a perfect set of data to study, but it will give us an idea.

Parents were asked to grade their child’s health with the question “In general, how would you describe [S.C.]‘s health? Would you say [his/her] health is excellent, very good, good, fair, or poor?”

The overall population showed the following distribution:

Excellent: 64.9%
very good: 22.9%
good: 9.8%
fair: 2.0%
poor: 0.3%

So, in general, American kids are pretty healthy.

How about autistic kids*? Here’s the distribution:

Excellent: 34.3%
very good: 29.5%
good: 23.0%
fair: 8.8%
poor: 4.3%

That is a big difference from the general population. From 65% “excellent” down to 34% for autistic kids. We don’t know how parents considered “autism” as being in “poor health”, though. In other words, parents could consider their child to not be in “excellent health” just because he/she is autistic. I throw that out for consideration, not as an explanation of these numbers. We just don’t know if this is a factor.

A clearer indication that autistic may have more medical health problems (at least to my eye) is the fact that “poor” is 4.3% for autistic kids, vs. 0.3% for their typical peers. I could be wrong, but I don’t see many parents listing their child’s health as “poor” just because the kids are autistic. I could see parents downgrading from “excellent” to “very good”, for example.

Compare the autistic group to children “who currently have developmental delay problems”. Note that this group includes many of the autistic kids. Here is the distribution for the kids with developmental delays:

Excellent: 30.1%
very good: 29.5%
good: 25.6%
fair: 10.9%
poor: 3.8%

To my eye, autistic kids and developmentally delayed kids are the same in terms of health grades.

In other words: yes, the general health of autistic kids looks like it is worse than the general population. However, the general health of autistic kids looks like it is basically the same as that for all kids with developmental delays.

To answer the obvious complaints:

1) I am not saying that autistic kids do not have health problems. Being autistic does not make one immune to serious health problems. If anything, autistic kids do have lower health grades than typical kids. However, autistic kids do not have lower health grades than developmentally delayed kids.

2) One (probably me) should look at health grades of autistic children who are rated as being more “severe” and see if the general health grades are lower for that subgroup.

3) This is not definitive data, but a response to a survey. However, within the limitations of a survey, I think these data are interesting to consider.

*Autistic kids being children whose parents told the survey team that the child currently has autism or an ASD.

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