Archive | July, 2010

Opportunity to help improve care services for adults with autism

30 Jul

A consultation to help improve care services and healthcare outcomes for adults with autism in England was launched today by Care Services Minister Paul Burstow.

This is the next step to help adults with autism live full and independent lives as equal and included citizens and follows the publication of the strategy for adults with autism: Fulfilling and rewarding lives.

The strategy sets a clear framework for all mainstream public sector services to support adults with autism and is backed up by the Autism Act 2009, the first ever condition specific legislation.

The 12-week consultation process seeks views from those with autism, their families, carers, representative organisations and all sectors of society on a number of important issues such as:

*diagnosis of autism

*increasing awareness of autism amongst frontline staff

*provision of training and specialist training for frontline staff

*appropriate assessment of needs for those with autism

*provision of relevant services for young people and adults with autism

*local leadership for NHS and social care in relation to the provision of services for adults with autism

Care Services Minister Paul Burstow said:

“I hope people will take part in this opportunity to influence the direction and progress of our autism programme.

“It is unacceptable when adults with autism do not get the right care and support they need from health and social care services.

“The Government wants the consultation to reach as many people as possible, in line with our goal of giving people more say in the decisions that affect their lives. These views will help shape our priorities as we seek to help adults with autism live fulfilling and rewarding lives.”

Mark Lever, Chief Executive of the National Autistic Society, said:

“This is the vital next step people with autism and their families have been waiting for. During the passage of the Autism Act, Parliament described this statutory guidance as the ‘teeth’ of the Act, so it is vital that it secures real and lasting change at ground level.

“Now, I’d like to urge as many adults with autism, their parents and carers to take part in the consultation to make sure it is robust and can be used to hold their local services to account. The right support at the right time can make an enormous difference to peoples’ lives.”

The statutory guidance for health and social care will be published by December 2010. The strategy will be reviewed in 2013.

Go to http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_118058 for info packs.

Give the IACC your input on what autism research should focus upon

28 Jul

I’ve already blogged this a few times. The deadline is coming soon, July 30th. The IACC listens to public input. Whatever you think should be stressed or not stressed in autism research, let the IACC know now.

The link for the input form is here

They allow you to give very extensive responses. Don’t let this put you off. If you only have a couple comments, give them. Do it now.

Autistic adult left in van on hot day, dies of exposure

28 Jul

I have a real hard time discussing these events. The story Woods Services client dies in van appeared on a site called PhillyBurbs.com. Here are the opening paragraphs:

Middletown police are investigating the death of a 20-year-old Woods Services resident with severe autism who was left inside a van parked on the campus for more than five hours on the hottest day of the year.

Brian Nevins, originally from Queens, N.Y., died of hyperthermia Saturday after he returned with several others from a day trip to the Sesame Place theme park, said Bucks County Coroner Dr. Joseph Campbell.

An example of how alternate vaccine schedules endanger children

28 Jul

With apologies–this post has nothing to do with autism except in pointing out where groups like Generation Rescue give out bad advice.

There is an outbreak of pertussis (whooping cough) in California right now. It looks to be a major outbreak, possibly the largest in fifty years–since vaccination was implemented.

Generation Rescue has a number of alternative vaccine schedules that they promote on their website. Their “favorite” schedule was created by a doctor named Donald Miller. Let’s look at it, shall we:

In summary, this is a vaccination schedule that I would recommend:

1. No vaccinations until a child is two years old.
2. No vaccines that contain thimerosal (mercury).
3. No live virus vaccines (except for smallpox, should it recur).
4. These vaccines, to be given one at a time, every six months, beginning at age 2:
1. Pertussis (acellular, not whole cell)
2. Diphtheria
3. Tetanus
4. Polio (the Salk vaccine, cultured in human cells)

*No vaccinations until a child is two years old.* That’s right, don’t vaccinate infants. The deaths in California so far are for children under the age of 6. Dr. Miller’s schedule, the one most recommended by Generation Rescue, would leave children vulnerable to pertussis until at least age 2.

This is just plain dangerous advice.

It isn’t even well thought out. Not in the least. The reason is found in the FDA list of vaccines licensed in the U.S.. You can take a look or you can take my word for it: there is no single pertussis vaccine available.

It is impossible to follow Generation Rescue’s favorite vaccine schedule, which calls for a single pertussis vaccine to be given after age 2.

Even Dr. Sears acknowledges that (a) pertussis is a vital vaccine to give to infants and (b) you can’t get pertussis as a single vaccine. (also, (c) he sees rotavirus as an “immediate danger” to babies and children, contrary to the position of Generation Rescue).

Diseases that don’t exist in the U.S. or that don’t occur during infancy in the U.S. (so even though they can be very severe, a child has almost no risk of catching it in the U.S.) that could be safely delayed are polio, Hep B, tetanus, and diphtheria (although to get a pertussis vaccine, tetanus and diphtheria have to come along with it).

Diseases that DO pose an immediate danger to babies and children are HIB and PC meningitis, Rotavitus, and Pertussis. So, I would rather children stay on time with those four vaccines and delay the flu shots (if you feel comfortable delaying flu shots).

The whooping cough epidemic is getting a lot of coverage in the press. Just today, Dr. Nancy Snyderman of the Today Show discussed this:

Visit msnbc.com for breaking news, world news, and news about the economy

Dr. Snyderman has a lot of good points, including the fact that there are immune compromised people in the community are at risk from the spread of diseases like pertussis.

Dr. Snyderman also makes a mistake in the interview. She claims that children died of measles in the U.S. last year. Watch for groups like the Age of Autism to ignore all the facts and concentrate on that mistake.

ACT Now!

27 Jul

UK Autism campaigners are working together to ‘ACT NOW!’ about the proposed benefit cuts and assessments and have launched a petition which we intend to deliver personally to No 10 Downing Street. Please ACT NOW! and sign by accessing: http://actnow01.web.officelive.com/default.aspx

The proposed benefit cuts and the assessments will begin in 2013 for those on the Autistic Spectrum who are in receipt of Disability Living Allowance, Employment Support Allowance and other benefits. In addition the cuts across Local Authorities and Primary Care Trusts could have a catastrophic effect on the Autistic community, a group whose vulnerability already creates high levels of stress and anxiety to those involved.

Those who live with autism 24/7, 365 days each year will be at the core of these cuts and will have to live with whatever ensues as a result of the cuts. We are not opposed to cuts as such and understand that cuts need to be made. However the magnitude of the changes that these cuts will bring about and how they will impact on a community that is already marginalised and discriminated against, must be taken into account.

In 2008 the National Audit Office estimated that autism costs the UK 28.2 billion pounds each year and yet only 18% of Local Authorities who responded to the National Audit Office survey were able to give precise numbers of adults with low functioning autism known to services, with only 12% being able to do so for adults with high functioning autism. Given that thousands of children and adults do not meet the criteria for the provision that is available in their Local Authorities and Primary Care Trusts we would like to know how much of the money being spent is on crisis management.

The cuts to budgets in Local Authorities and Primary Care Trusts are going to make it even harder for children and adults to meet the criteria to access the provision that is available within Authorities and Primary Care Trusts, and we fear that only the minimum that can be supplied to these children and adults will be what is given. We also have grave concerns that there will be no new services that would directly benefit autistic children and adults, commissioned by Local Authorities and Primary Care Trusts.

We are calling for urgent talks with Her Majesty’s Government to ensure that those who live with autism 24/7 are consulted fairly and effectively in every aspect of the decision making process that will ultimately affect our lives.

We would like HMS Government to address and respond to our concerns. We WANT HMS Government to address and respond to our concerns.

ASAN Update on IACC Public Comment Deadline

27 Jul

The Interagency Autism Coordinating Committee (IACC) has the job of creating a strategy for the U.S. government’s research in autism. They are made up of government officials, professionals, parents and, most importantly, autistics. The IACC creates their Strategic Plan with input from the public.

One of the big opportunities to submit input is this week. The IACC has an “RFI“, request for information. This is your chance to tell the IACC what you think should (and should not) be stressed in autism research.

I was reminded of this deadline when I received an email from the Autistic Self Advocacy Network (ASAN), which I quote below:

This is another ASAN Update for bloggers in the Autistic and disability rights communities. The public comment period for the Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research closes this Friday, July 30, 2010, as stated in the IACC’s reminder notice set forth below. The IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism. The Autistic Self Advocacy Network encourages public participation in the IACC’s proceedings.

As always, please feel free to contact us if you have any questions or feedback, and let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network

The RFI announcement is below:

Reminder: IACC 2010 RFI to Inform the 2011 Update of the IACC Strategic Plan Closes This Friday, July 30, 2010

The IACC has issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

If you would like to respond to the RFI, please go to: http://www.acclaroresearch.com/oarc/2010rfi/. Responses will be accepted until this Friday, July 30, 2010.

Take the time to comment. You don’t have to give them permission to use your name. You don’t have to respond to every section. You can give a short comment or two (or more) and be done.

Now is the time!

Desiree Jennings back in the news

26 Jul

Remember Desiree Jennings? She was a cheerleader ambassador for the Washington Redskins who claimed that a flu shot gave her dystonia. She was highlighted by the Age of Autism blog and by Generation Rescue, who connected her with alternative medical practitioner Rashid Buttar. Mention of Desiree Jennings has been removed from the Generation Rescue website. Neurologist and blogger Steve Novella discussed how her case more closely resembled a psychogetic disorder. Dr. Novella’s take on the case prompted the American TV show Inside Edition to take a second look. We discussed the Jennings case then here on LeftBrainRightBrain as Successful blogging by Steven Novella: the Desiree Jennings story
.

Now the TV Show 20/20 has taken a look a the Desiree Jennings story in Medical Mystery or Hoax: Did Cheerleader Fake a Muscle Disorder?

First, one must stress that many people following this case have not been calling out “hoax”. A psychogentic disorder is quite real, just not dystonia and not physical.

That said, here is the trailer for the 20/20 episode:

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt.swf

I find the beginning to be really cheesy. The way they took the video to make it look like it was some film taken decades ago was, well, cheesy. Ms. Jennings is less than 30 years old. Somehow I doubt her wedding was recorded on film and, even if it was, it wouldn’t be so deteriorated in a few years. But, we get the idea–the wedding was in the past.

Ms. Jennings has been used as an example of how successful Rashid Buttar is. One article, copied to Dr. Buttar’s blog, states that shortly after beginning treatment with him:

The good doctor ran to his patient, fearing she had suffered another seizure but instead was elated to find that she was awake, coherent and carrying on a normal conversation with the nurses and her family. By the next day she was walking the corridors with limited affliction. (See the video at: http://www.desireejennings.com.) The AMA has remained silent.

(note–www.desireejennings.com is no longer active).

But just as she was leaving Dr. Buttar’s clinic on her last visit in December 2009 — with “20/20’s” cameras rolling — it all seemed to fall apart. Jennings was in distress again. She could no longer walk forward, and had to be taken out in a wheelchair.

In the early discussions of Ms. Jennings, much interest focused on the idea that she was diagnosed with Dystonia by doctors at Johns Hopkins. People complained that Dr. Novella shouldn’t make statements that contradicted doctors who actually saw Ms. Jennings. The 20/20 story states:

In search of a cure, Jennings and her husband Brendan visited countless doctors and four hospitals, among them Johns Hopkins Hospital. There, a rare movement disorder that causes the muscles to twitch or convulse involuntary. The symptoms resembled her own.

“a physical therapist told Jennings about dystonia”. That’s a bit different from a doctor diagnosed her with dystonia.

Yes, this isn’t about autism at all. But this story does shed some light onto groups like Generation Rescue who supported Desiree Jennings, sending her to Dr. Buttar. The story was compelling for them, even though it was not about autism. It was about alleged vaccine injury. Generation Rescue appears to have abandoned Ms. Jennings now. It sheds light on Dr. Buttar, whose claims of recovery for Ms. Jennings appear to be unsupported by the facts. Dr. Buttar is one of the more prominent names in the alternative medicine community marketing their services to the autism community.

Laura Hewitson has left the University of Pittsburgh

26 Jul

Laura Hewitson is the lead researcher on a series of studies on comparing vaccinated and unvaccinated macaque monkeys. This work became public first in the 2008 IMFAR conference. At that time and since, the work from these studies has been strongly criticized. Dr. David Gorski of Science Based Medicine discussed those abstracts. It is very likely that the new conflict of interest declaration policy for IMFAR resulted from Ms. Hewitson’s lack of declaration of her own COI at IMFAR (she has filed a claim with the vaccine court on behalf of her child). One paper resulting from that study was withdrawn before it was published (discussed by Countering Age of Autism and Respectful Insolence). More recently, a study from this series was published in which conclusions were drawn based on only 2 control animals. Those control animals underwent brain shrinkage during a critical period of infant growth. In other words, there was something seriously wrong with the control animals and, hence, the entire study. The study (and subsequent discussions by groups such as SafeMinds) spun the brain shrinkage around to claim that the “The vaccinated primates also showed altered maturation of their brains’s [sic] amygdalas.”

Ms. Hewitson has listed here professional affiliations as:

1Department of Obstetrics and Gynecology, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA;
2Thoughtful House Center for Children, Austin, TX, USA;

In 2008 she was listed as Associate Professor of Obstetrics, Gynecology & Reproductive Sciences on the University of Pittsburgh’s website. That is the last date for an internet archive version of that page. A google cache version of the page from June 2010 listed her as “adjunct” Associate Professor. Adjunct faculty are typically part time or people from other institutions who are working in some capacity with the University.

Ms. Hewitson’s webpage link at Pitt is no longer active. She is no longer listed on the faculty page for the Pittsburgh Development Center (PDC). The PDC confirmed that she is no longer on the faculty there.

Before people start speculating, the most likely explanation is that it simply became too difficult to balance a career at Thoughtful House in Texas with a faculty appointment in Pennsylvania.

This will mean that in the future Ms. Hewitson will be unable to use her University of Pittsburgh affiliation to bolster the credibility of her research. Studies begun while at Pitt will likely continue to show that affiliation (such as the recently published study on the amygdalas of macaques).

Whatever the reason for her departure, I welcome it. I don’t believe that a fine institution like Pitt should have its name attached to the level of research in the recent paper. It is difficult to simply put into simply how poor the quality of that study was.

OSR to be pulled from the market?

22 Jul

OSR #1, a chemical invented as a chelator and now marketed as a dietary supplement, will be pulled from the market in about 1 week’s time if the message below attributed to Boyd Haley is accurate:

On 18 June 2010, the FDA wrote to CTI Science questioning whether OSR#1® fit within the agency’s definition of a dietary supplement, indicating that instead it appeared to be a drug. Although we believe the product meets the legal definition of a “dietary supplement,” we have decided not to contest this point but to work with the agency. While achieving formal drug approval is lengthy and costly, CTI Science will in the course of it prove to FDA’s satisfaction the safety and efficacy of OSR#1® and ultimately be able to offer OSR#1® to the public with FDA-authorized therapeutic claims.

As a result of this decision, *CTI Science has voluntarily agreed to remove OSR#1® from the market effective Thursday, 29 July 2010*. The product will not be available for sale after that date until new drug approval has been obtained. Please continue to access our website, http://www.ctiscience.com , for updates on OSR#1® in the future.

On a personal note, I have met most of the medical professionals we deal with, and your passion and dedication to excellence are rarely seen these days. It has been an honor to work with you, and I am deeply appreciative of the support you have shown in the past. Please accept my best wishes for your continued success. I look forward to working with you in the future again with OSR#1®.

Boyd E. Haley, PhD

President
CTI Science-Color-EM
CTI Science, Inc.

The Twitter account for CTI science has the following message posted earlier today which would suggest the above message is accurate:

Registered Medical Professionals: Please review your email for an important message about the future availability of OSR#1®. http://www.OSR1.com

I will say that I welcome this move. I agree with the FDA that OSR #1 is not a dietary supplement and, as such, should undergo much more rigorous safety testing before being marketed.

More unidentified autistic adults found

17 Jul

One of the recurring themes heard in online discussions of autism is “where are the autistic adults?” The low number of identified adults is used as evidence of an epidemic and used to promote the vaccine-causation hypothesis.

A number of studies have started looking at adult populations and they always find a greater number of autistic adults than previously identified. Probably the largest study and the most discussed is one performed by the NHS in the UK which found a prevalence of about 1% in adults.

The NHS study looked at adults in the general population, outside of any institutional type setting.

One complaint that is often raised is where are the more severely challenged adults? The “obvious” autistics? How could they have been missed. Studies by Prof. Peter Bearman at Columbia and Prof. David Mandell have shown that, yes, we have miss counted autism in more challenged groups in the past.

Now a recent study from Iceland looks at autism in adults in Reykjavik with intellectual disabilities. They found that there were twice as many autistic adults than previously thought.

Prevalence of autism in an urban population of adults with severe intellectual disabilities – a preliminary study.

Saemundsen E, Juliusson H, Hjaltested S, Gunnarsdottir T, Halldorsdottir T, Hreidarsson S, Magnusson P.

State Diagnostic and Counselling Centre, Division of Autism, Kopavogur, Iceland.
Abstract

Background Research on the prevalence of autism in Iceland has indicated that one possible explanation of fewer autism cases in older age groups was due to an underestimation of autism in individuals with intellectual disabilities (IDs). The present study systematically searched for autism cases in the adult population of individuals with severe ID living in the city of Reykjavik, Iceland. Methods Potential participants (n = 256) were recruited through the Regional Office for the Affairs of the Handicapped in Reykjavik. First, a screening tool for autism was applied, followed by the Childhood Autism Rating Scale and finally the Autism Diagnostic Interview-Revised (ADI-R). Results The point prevalence of severe ID was 3.7/1000 (95% CI 3.2-4.1) with a male-female ratio of 1.2:1. Participation rate in the study was 46.5%. Participants were younger than non-participants and more often residents of group homes. The prevalence of autism was 21% (25/119) (95% CI 14.7-29.2) with a male-female ratio of 1.8:1. Of the individuals with autism, 10/25 (40%) were verbal according to the ADI-R definition, and 18/25 (72%) had active epilepsy and/or other neurological conditions and handicaps. Conclusion The study identified twice the number of autism cases than those previously recognised within the service system. Autism is a prevalent additional handicap in individuals with severe ID, which should always be considered in this population. There are indications that the estimated prevalence of autism found should be considered minimal.

Does this show that there has been no “epidemic”? No. But it does show (again) that the idea that autistics are so obvious that they couldn’t be missed is, well, a myth.

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