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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.

Tags: , ,

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.

U.S. Senator Ted Kennedy passes

27 Aug

Senator Ted Kennedy has passed away.

The Kennedy family is well known worldwide. He was well known in his own right as a powerful senator for over 40 years (third longest tenure in the U.S. senate in history). His family has included many prominent politicians and citizens.

The Kennedy family has a history of supporting disability rights issues. Ted Kennedy is responsible for much of that.

Here is the family’s statement. They have my condolences.

“Edward M. Kennedy—the husband, father, grandfather, brother and uncle we loved so deeply—died late Tuesday night at home in Hyannis Port. We’ve lost the irreplaceable center of our family and joyous light in our lives, but the inspiration of his faith, optimism, and perseverance will live on in our hearts forever. We thank everyone who gave him care and support over this last year, and everyone who stood with him for so many years in his tireless march for progress toward justice, fairness and opportunity for all. He loved this country and devoted his life to serving it. He always believed that our best days were still ahead, but it’s hard to imagine any of them without him.”

Here is the section on disability from Senator Kennedy’s website. It is quite extensive.

Disability Rights

In 1978, Senator Kennedy cosponsored the Civil Rights Commission Act Amendments of 1978, which expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability. Two years later, Kennedy cosponsored the Civil Rights for Institutionalized Persons Act, which enforced the rights of people in government institutions such as the elderly, the disabled, the mental ill, and the incarcerated under the Constitution. This law grew out of increased awareness of the unhealthy and inhumane living conditions and treatment of many people within government institutions, such as the case of the Willowbrook State School for the Mentally Retarded, which came to the forefront in 1972. Beyond assuring humane living conditions and basic rights to such individuals, the law details its protection of the religious practice of the institutionalized.

Senator Kennedy cosponsored legislation in 1984 requiring polling stations to provide physical accessibility for disabled and elderly people on federal election days. If this is not possible, polling places are required to provide alternative voting methods so that individuals in such a situation are able to cast a ballot. The law also holds that polling places must make registration and voting aids available for the elderly and people with disabilities. In 1986, Kennedy was an original cosponsor of the Air Carrier Access Act. This law required that facilities and services be provided to people with disabilities traveling by air. Accessibility requirements applied not only to the aircrafts but also to airports and terminals.

In 1988, Kennedy introduced the Fair Housing Act Amendments to extend the Fair Housing Act of 1968 to include people with disabilities and families with children. By expanding the law, the FHAA prohibited discrimination towards people with disabilities in the sale or rental of housing and in the terms, facilities and services provided. It also sets certain guidelines for remodeling and necessary modifications to a residence for both the landlord and the tenant.

On July 26, 1990, the Americans with Disabilities Act was enacted into law. Introduced by Senators Kennedy and Harkin, the ADA prohibited discrimination by a covered entity (employer, employment agency, labor organization, etc) against any qualified individual with a disability in job application procedures, hiring or discharge, compensation, advancement, training, etc. The law declared that no qualified individual with a disability shall be excluded from the participation in, denied the benefits of, or subjected to discrimination by a public entity, and also required accessible rail transportation and telephone services for persons with speech or hearing impairments.

In response the alarming level and increase in the victimization and violence against people with disabilities, Congress passed the Crime Victims and Disabilities Awareness Act of 1998. Kennedy cosponsored the bill, which directed the Attorney General to conduct a study on the issue and to include specific details regarding the crimes against people with disabilities and to include them in the National Crime Victimization Survey, an annual publication. In 2004, Kennedy was an original cosponsor of the Assistive Technology Act, which supported states in an effort to sustain and strengthen the capacity to meet the assistive technology needs of individuals. In addition, it would focus funding on investments in technology that could benefit those living with disabilities. Millions of Americans experience severe disabilities that affect their ability to see, hear, communicate, walk, or perform other basic life functions. This should not preclude any individual from enjoying full integration in the economic, political, social, and educational activities embedded in American life.

Vocational Rehabilitation and Employment

Senator Kennedy was a strong supporter of the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978. These amendments included a number of very important steps in disabilities legislation. It established a functional definition of developmental disability, created the National Council on the Handicapped and the National Institute of Handicapped Research, set a funding minimum for protection and advocacy services and authorized a grant for independent living services and opportunities for people with disabilities.

In 1982, Kennedy was one of the main cosponsors of the Job Training Partnership Act, which was designed to break down some of the barriers facing “economically disadvantaged” individuals and among them people with disabilities. Kennedy made sure to include provisions stating that people could not be excluded from the training program and the advantages it provides based on a disability or other classification. Four years later, Kennedy and Senator Quayle introduced amendments to the Act that afforded people with disabilities special consideration in the awarding of discretionary grants within this training program through the provisions of these amendments.

In 1986, Kennedy cosponsored the Employment Opportunities for Disabled Americans Act, which made work incentives for disabled individuals a permanent fixture of the Social Security Act. People working despite severe disabilities became eligible for special status to receive SSI benefits and Medicaid coverage. This special status was valid unless the impairment went away or their earnings exceeded an amount that zeroed out their cash benefits.

In 1999, Kennedy was the primary sponsor with Senator Jeffords of the Ticket to Work and Work Incentives Improvement Act. The law and its “ticket to work and self-sufficiency” program expanded employment opportunities for people with disabilities through providing disabled Social Security beneficiaries greater support and more options. It also allowed for working people with disabilities to receive benefits from Medicaid and/or Medicare.

Assistive Technology

Senator Kennedy was an original cosponsor of legislation that provided funding to all 50 states in order to raise awareness about the potential of assistive technology to significantly improve the lives of people of all ages with disabilities. It also aimed to facilitate a coordinated effort amongst state agencies to provide and encourage the use of assistive technology for individuals with disabilities. Senator Kennedy cosponsored reauthorizations of the Act in 1994, 1998, and 2004.

Education

Senator Kennedy was an original cosponsor of the Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act (IDEA). The law served to amend the Education of the Handicapped Act and to guarantee a free and appropriate public education to children with disabilities, regardless of their severity, in all states.

Kennedy was an original cosponsor of the Handicapped Children’s Protection Act of 1986, which overturned a Supreme Court decision and allowed courts to award sensible attorneys fees to parents of children with disabilities winning in due process proceedings and other court actions under part B of the Education Act. That same year, Kennedy cosponsored amendments to the Education of the Handicapped Act, establishing a new grant program aimed at developing an early intervention system benefiting infants and toddlers with disabilities and their families. It also sought to provide and promote preschool programs for children ages 3 to 5 with disabilities.

In 1990, Kennedy was an original cosponsor of a bill that changed the name of the Education of the Handicapped Act to IDEA, changed the term from handicapped to disability, and added two categories to the amendment: autism and traumatic brain injury. It also reauthorized the programs under the previous act to provide improved support to students with disabilities particularly in the terms of computer access and assistive technology. In 1997, Kennedy was an original cosponsor of amendments that consolidated the original 9 subchapters of IDEA into 4 subchapters. Among the other changes were the inclusion of special education in state and district-wide assessments, the promotion of mediation as an option to disputes between teachers and parents of children with disabilities, a provision that special education students be disciplined in the same way as other students, the continuation of services to adult inmates with disabilities who were eligible for IDEA prior to their incarceration, and the requirement of charter schools to meet the needs of children with disabilities and to receive IDEA funds from district schools.

In 2004, Kennedy was the sponsor and lead negotiator of the reauthorization of the IDEA, with a new focus on promoting better alignment of special education with general education and having school districts be accountable for the educational outcome of all students, including students with all ranges of disabilities.

Health Care

In 1982, Kennedy was an original cosponsor of legislation that allowed for states to cover home health care services for particular children with disabilities under their Medicaid plans. This was intended to allow parents “respite” or rest periods with a trained professional helping to care for their child’s needs.

In 1990, Kennedy, along with Senator Hatch, introduced the groundbreaking Ryan White CARE Act, which provided emergency relief to thirteen cities hardest hit by the AIDS epidemic, and also provided substantial assistance to all states to develop effective and cost-efficient AIDS care programs, aimed particularly at early diagnosis and home care. Other services included in the bill were drug treatment, dental care, substance abuse treatment, and outpatient mental health care.

In 1991, Kennedy sponsored legislation to reorganize the Alcohol, Drug Abuse, and Mental Health Administration. Specifically, it separated the previously combined treatment and research branches of the department, which improved the capacity to effectively address both the prevention and treatment of substance abuse and mental health.

The Ryan White CARE Act reauthorization of 2000 reaffirmed Senator Kennedy’s commitment to providing access for persons with HIV disease to life-sustaining medications, medical care and other essential services. The Act authorized nearly $9 billion in HIV/AIDS services over the next five years.

In 2006, Kennedy won a 5-year-long battle to pass the bipartisan Family Opportunity Act. The law provides states the option of allowing families of disabled children to purchase health coverage through Medicaid. The bill passed as an amendment to the budget reconciliation bill.

In 2007, Senator Kennedy reauthorized the Ryan White Care Act of 1990. The reauthorization focused on quality of life issues, new and emerging therapies, and ensuring that funding for programs followed the people affected by the disease. Having over 15 years worth of information and recognizing that the disease had changed significantly, the focus was placed on prevention and issues of chronic care. It also acknowledged that the demographics had changed and the disease was now evident beyond the cities and in rural areas as well. Drug treatments had also advanced and people living with HIV were staying alive 20 to 30 years beyond their day of diagnosis.

In 2008, after more than 10 years of effort, Senator Kennedy championed historic legislation to reform the inequities in the way mental health and substance use disorders are treated by the insurance industry. This legislation, co-sponsored by Senator Domenici, assured individuals living with mental health and substance abuse issues that there mental health benefit would be treated equally with the medical-surgical benefit regarding treatment limitations and financial requirements. This means that co-pays, out of pocket expenses, and deductibles cannot be treated differently than they way medical-surgical is treated. This legislation assured equity for 113 million Americans.

In July of 2009, Senator Kennedy succeeded in having the CLASS Act be included in the text of the Affordable Health Choices Act that was passed out of the HELP Committee. This bill aims to provide the elderly and disabled with a daily cash benefit that allows them to purchase the services and supports they need to remain in and be productive member of one’s community.

Developmental Disabilities

In 1975, Senator Kennedy cosponsored legislation to create a “bill of rights” for people with developmental disabilities. The bill also provided funding for services for people with this type of disability, supplemented funding for affiliated university facilities and created state-based systems of protection and advocacy groups in all 50 states. Kennedy was an original cosponsor of the reauthorization in 1987, which updated the language of the 1975 law. It also gave greater independence to the State Planning Councils, fortified the authority of the state-based protection and advocacy systems in investigations into abuse and neglect, and established separate line items for funding and training in university affiliated programs.

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