Archive by Author

Recording IEP meetings

7 Dec

I was in BestBuy (and another electronics store) this past weekend. As I wandered around I stumbled upon microphones. This reminded me that I want to upgrade my method for recording IEP (Individual Education Plan) meetings. For those who may be unaware, U.S. Law allows parents or districts to record IEP meetings. WrightsLaw points out that this is not a universal right in the U.S.: “State departments of education or school districts can require, prohibit, limit, or regulate the use of recording devices at IEP meetings.” California has state laws allowing recording of IEP meetings. From DisabilityRightsCa.org:

51. Can I tape record an IEP meeting?

Yes. Parents may tape record an IEP meeting, even without the school district’s permission, as long as the parents give the school district 24 hours notice of their intention to do so. Similarly, a school district may tape record a meeting with 24 hours notice to the parent. However, the district cannot tape record the meeting if the parent objects. If the parent objects to the district tape recording, then there can be no tape recording of the meeting by either the district or the parent. [Cal. Ed. Code Sec. 56341.1(f)(1).]

Under federal law, audio tape recordings made by the school district are governed by the Family Educational Rights and Privacy Act of 1974. [20 U.S.C. Sec. 1232(g).] In addition, you have the right:

(1) To inspect and review district-made tape recordings;

(2) To request that the tape recordings be amended if you believe that they contain information that is inaccurate, misleading, or in violation of the rights of privacy or other rights of the individual with exceptional needs; and

(3) To challenge, in a hearing, information that you believe is inaccurate, misleading, or in violation of the individual’s rights of privacy or other rights. [34 C.F.R. Sec. 99.10-99.22; Sec. 56341.1(f)(2)(A)&(B).]

Recording technology has changed a lot in the past few years. Only a few years ago, our district was still using tape recorders. Tapes are bulky and you might need a few tapes (and a lot of flipping of tapes) to get through a long meeting. You may find yourself transferring the tapes to a computer file anyway, adding more time and more chances to mess something up. Digital recorders are now ubiquitous. Smart (and not so smart) phones can serve as a digital recorder. Otherwise, there are a lot of options in the <$100 range (which wasn't the case a few years back). One can use a laptop, with the correct application (Microsoft windows includes an application that is limited to 60 second recordings).

IEP meetings are long and if you are recoding them, you should be prepared to listen to them. In addition, you may have to transcribe them. Room recordings from cheap microphones can be painful. Last think you want is the fatigue of listening for hours to an IEP meeting, with the fatigue of a bad recording, with the fatigue of having to transcribe, "And, on this very important point [garble]".

I'd be very interested in other people's experiences with somewhat more modern, yet portable equipment. Especially since now some digital recorders are packaged complete with speech-to-text software like Dragon Naturally Speaking. Software like that tends to be focused on dictation applications, where one person uses a microphone close up.

Girls less likely to be diagnosed with autism than boys

6 Dec

A recent study out in the Disability and Health Journal shows that girls are more likely than boys to remain undiagnosed. The study, by David Mandell‘s group at the University of Pennsylvania, evaluated data from the Autism and Developmental Monitoring Network (ADDM). This is the same group that collects and analyzes data for the CDC’s autism prevalence studies.

Each ADDM study concentrates on children from a specific birth year. In this case, children born in 1994. They review records (medical, educational or both as available) to determine which children meet the criteria for autism. Some children already have a diagnosis of autism in their records. Other children are determined to be autistic via the ADDM review.

Prof. Mandell’s group found that for those with existing diagnoses at the time of review, girls and boys were similar in terms of average age of diagnosis and first age of evaluation. However girls were more likely to be undiagnosed (medical or educational) at the time of the ADDM review.

Here is the abstract.

Sex differences in the evaluation and diagnosis of autism spectrum disorders among children.

Giarelli E, Wiggins LD, Rice CE, Levy SE, Kirby RS, Pinto-Martin J, Mandell D.

Division of Biobehavioral Health Systems, University of Pennsylvania School of Nursing, Philadelphia, PA 19104, USA.
Abstract

BACKGROUND: One of the most consistent features of the autism spectrum disorders (ASDs) is the predominance among males, with approximately four males to every female. We sought to examine sex differences among children who met case definition for ASD in a large, population-based cohort with respect to age at first developmental evaluation, age of diagnosis, influence of cognitive impairment on these outcomes, and sex-specific behavioral characteristics.

METHODS: We conducted a secondary analysis of data collected for a population-based study of the prevalence of ASD. The sample comprised 2,568 children born in 1994 who met the case definition of ASD as established by the Autism and Developmental Disabilities Monitoring (ADDM) Network for ASD surveillance. Children who had a history of developmental disability and behavioral features consistent with the DSM-IV-TR criteria for autistic disorder, Asperger’s disorder, and Pervasive Developmental Disorder-Not Otherwise Specified in existing evaluation records were classified as ASD cases via two paths: streamlined and nonstreamlined. Streamlined reviews were conducted if there was an ASD diagnosis documented in the records. Data were collected in 13 sites across the United States through the ADDM Network, funded by the Centers for Disease Control and Prevention.

RESULTS: Males constituted 81% of the sample. There were no differences by sex in average age at first evaluation or average age of diagnosis among those with an existing documented chart diagnosis of an ASD. Girls were less likely than boys to have a documented diagnosis (odds ratio [OR] = 0.76, p = .004). This analysis was adjusted for cognitive impairment status. In the logistic model, with the interaction term for sex and cognitive impairment, girls with IQ of 70 or less were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.70, 95% confidence interval [CI] = 0.50-0.97, p = .035). Boys with IQ greater than 70 were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.60, 95% CI = 0.49-0.74, p < .001). This finding (less likely to have a documented diagnosis) was also true for girls with IQ greater than 70 (OR = 0.45, 95% CI = 0.32-0.66, p < .001). Girls were more likely to have notations of seizure-like behavior (p < .001). Boys were more likely to have notations of hyperactivity or a short attention span and aggressive behavior (p < .01).

CONCLUSIONS: Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Alex Barton wins $350k

3 Dec

You may recall the case of Alex Barton the (then) five year old boy who was ‘voted‘ out of his class:

Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

This was one of the few instances the whole autism community spoke as one to voice their outrage.

Anyway, time has moved on and today it has been announced that Alex Barton has won $350k damages. Good for him.

And I do believe that. It will be good for him. However, I wonder if it is good for the issue of wider autism advocacy. Whilst I believe it is right that he should win this award I notice that:

The teacher who held the vote, Wendy Portillo, was originally suspended a year without pay. The school board has reversed the decision and has reinstated her.

How does this help future autistic children coming through this teachers classroom and who will be exposed to her (to use a very kind word) strange ideas about what autism is and how best to deal with it?

It’s my opinion that she should’ve continued to be placed under suspension (with or without pay) until she had completed a course in autism awareness. That in fact should’ve been the very _least_ that should’ve happened.

Portillo is an educator. An educator at the prime point in a pupil’s life. The lessons and attitudes she shares with them will stay with them for the rest of their lives in some shape or form. At the point she decided to ridicule young Alex Barton she had an opportunity to teach her class the _right_ way to deal with the issue of behaviour in the wider world and also to provide a ‘teachable moment’ to her pupils about what autism was and the nature of autism. She elected to do neither and instead decided to make a mockery of Alex Barton.

The lesson of this incident must stay with the autism community. Autistics are prime targets for ridicule and bullying – even from adults who should know better. We must strive as a whole community to find ways to ensure this doesn’t become any more common than it already is.

IACC Subcommittee for Planning the Annual Strategic Plan Updating Process tomorrow (Dec. 3rd)

3 Dec

Tomorrow there will be a subcommittee meeting for the IACC to work on the Strategic Plan. You can listen in or watch via webinar. It is likely past time for any public comments to be accepted for this meeting, but if you have anything to suggest, they will keep it and distribute it after the meeting (possibly in a future meeting).

Reminder: Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process

Please join us for an IACC Subcommittee for Planning the Annual Strategic Plan Updating Process meeting that will take place on Friday, December 3, 2010 from 10:00 a.m. to 4:00 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The subcommittee will discuss the updating of the IACC Strategic Plan for ASD Research.

Meeting location:
The Bethesda Marriott
5151 Pooks Hill Road
Bethesda, MD 20814

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible through a webinar and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please e-mail IACCTechSupport@acclaroresearch.com.

Webinar Access: https://www2.gotomeeting.com/register/687738010

If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Blogger flex muscle–now how about for productive purposes?

2 Dec

Bloggers, largely from outside the autism communities, managed to halt plans to show a scary vaccine themed advertisement which SafeMinds was trying to place in movie theaters for the week of the US Thanksgiving holiday.

This is all well and good, but there has to be more that can be accomplished. More as in something that advances a good cause rather than obstructs a bad one. For the most part I don’t blog to advocate.

There have been some notable successes by bloggers adding to advocacy efforts, in my opinion. For example, stopping the NYU “Ransom Notes” campaign and getting Autism Speaks to back off of the “I am Autism” video. I can only stand back in awe at the efforts of Kathleen Seidel at Neurodiversity.com in depth of reporting on important subjects.

While I don’t plan on moving to making my position here into primarily calling for action, I do hope that with the waning of the vaccine/mercury movement, more effort can be made on directly improving the future my child will live in.

Unfortunately, while it is waning, the vaccine debate will not go away. The way it is waged is damaging, to society as a whole and to the autism communities in particular.

It may be my own personal bias, but I do believe that scientific research has a great benefit in that quest. I believe that the United States, as the leader in autism research funding, should be leading the way. I will continue to follow and encourage others to participate in the IACC process through stakeholder comments.

I also strongly believe in human rights. I believe that we as a people have a long way to go still to insure the rights of the disabled. It is unfortunate that there are so few autism organizations which put the dignity and rights of autistics as a prime focus. It is absolutely shameful that many so-called autism organizations willingly and purposefully act in ways which harm the dignity and rights of autistics.

If we could only harness half of the energy that has been applied to the vaccine-causation discussion, we could make huge gains. 2011 has at least one real goal to work for. If you read the text of the Combating Autism Act (CAA), you will find this phrase a number of times: “Sunset.–This section shall not apply after September 30, 2011.” Yes, the CAA is up for renewal in 2011. The CAA reinstituted the Interagency Autism Coordinating Committee (IACC). This group drafts the Strategic Plan for autism research funding in the United States. The Plan was instrumental in funneling a significant amount of the federal economic stimulus money into autism research–had there been no plan in place, that funding may have been less or zero. Moving forward, it is time to push for a greater amount of research funding to be applied to areas that can have a direct impact on the lives of autistics. Much of the funding is focused on causation and treatments aimed at young children. Much more focus needs to be applied to older children, adolescents and adults. Much more.

Advancing paternal age and risk of autism

2 Dec

This isn’t the first study to look at paternal age as a possible risk factor for autism but it is, I believe, the first meta-analysis of the subject. The conclusions of the study were:

Based on data from a birth cohort, a family-based study and a meta-analysis, we provide the strongest and most consistent evidence available that advancing paternal age at the time of birth of offspring increases the risk of autism. De novo germline mutations, epigenetic alterations and life course toxic exposure may partly explain the observed association. The evidence is substantial enough to justify a search for the underlying mechanisms in both human and animal models

An interesting conclusion for a few reasons. First and foremost the idea of paternal age being a definite risk factor for autism. Secondly the authors don’t shy away from the idea that ‘life course toxic exposure’ may explain the association. Its not exactly a new observation amongst science (despite what some observers think) but its good to see it placed so clearly amongst the other clear risk factors.

There will be those, I predict, who will have a go at this study for somehow ‘blaming’ fathers/parents. It has happened in the past and will no doubt have the same effect on those who’ll attack this study for their own reasons.

Another example of misdiagnosed autistic adults

2 Dec

I am very bothered by the strong possibility that a there exists a large group of autistic adults who are either undiagnosed or misdiagnosed. Demonstrations of this come up over and over in the research literature. Such is the case with Missed diagnosis of autism in an Australian Indigenous psychiatric population, which came out on Pubmed today.

This recent example is from a very specific group: Indigenous Australians hospitalized with schizophrenia diagnoses. This particular group was 215 patients. Of this group, 14 were selected (I haven’t read the paper so I don’t know how this subgroup was selected). Out of that particular subgroup, 13 were “considered” to have a diagnosis of autism.

Missed diagnosis of autism in an Australian Indigenous psychiatric population.

Roy M, Balaratnasingam S.

South Birmingham Primary Care Trust, Birmingham, UK.
Abstract

Objective: The aim of this paper is to review the diagnosis among adult Indigenous patients from the Kimberley region of Western Australia who had an existing diagnosis of schizophrenia. A visit from a psychiatrist specializing in intellectual disability provided the opportunity for conducting psychiatric assessments from a developmental perspective. Method: Selected patients with schizophrenia were assessed from an intellectual disability perspective from an active case load of 215 patients. Result: Thirteen out of 14 selected patients were considered to have a diagnosis of autism when a developmental history was undertaken. Case studies are presented to illustrate the overlap in symptoms and potential for the diagnosis of autism to be missed. Conclusions: Autism spectrum disorders may be missed in Indigenous population groups. This has implications for treatment and service provision. Clinicians need to be mindful of the diagnostic possibility that an autism spectrum disorder might be masquerading as schizophrenia in the context of intellectual disability and atypical presentation.

Misdiagnosis of autistics happens. It happens in the U.S., the U.K. and elsewhere. Again, this really bothers me. It bothers me that there seems to be little focus on this issue by autism advocacy organizations, even by the research funding agencies.

Don’t Take the Risk: Get the Facts on SafeMinds

1 Dec

No matter what your position is on SafeMinds, I bet you found that title somewhat overly sensational. You may have thought that there was a not-so-hidden message in it. I’d love to know what your initial reaction was. Think it over before going on.

Here is one of the banner icons from the SafeMinds website. “Don’t Take The Risk” (big letters) above “Get the Facts on the Flu Vaccine” (smaller letters, below). What message does this send?

So, once again I’ll ask you to think about your initial reaction to the title of this blog post. If you found it sensational, if you found it leading, what do you think about the SafeMinds banner?

That banner is from the site you go to if you follow their advice to get more information at “safemindsflu.org”. You may recall that SafeMinds was collecting donations to fund the placement of their advertisement about flu vaccines, an ad that asked you to go to safemindsflu.org. As it turns out that fundraising effort was at least partially for naught. You can read about it in Orac’s Something to be thankful for: No anti-vaccine propaganda with my Harry Potter, or at skepchick’s Let’s all go to the movies and save ourselves some lives.

As you might guess from Autism News Beat’s, AMC says no to shouting fire in a crowded theater, AMC movie theaters decided that they would pass on the opportunity to show the SafeMinds advertisements.

Why? Well, according to a comment left on the AMC community discussion forum by an AMC employee:

Ryan Noonan, Official Rep, replied 12 hours ago
Thank you for your feedback.

I understand there’s a lot of passion on both sides of this issue, however, as an entertainment company, AMC feels our movie screens are not the proper forum for this debate.

Quite right: public service announcements aren’t for the promotion of a debate. As if to prove AMC’s decision correct, the forum then devolved into the usual debate on mercury in vaccines, with much of the usual misinformation and, as Mr. Noonan notes, name-calling:

Thank you all for taking the time to post. As I have addressed, AMC Theatres have not and will not be airing any spot about this topic. While we appreciate the feedback received, we consider this matter closed.

Per Get Satisfaction’s community guidelines, discussion about topics unrelated to AMC Theatres, as well as name calling are against Get Satisfaction’s community guidelines. Despite numerous requests to refrain from debating issues not related to AMC Theatres, there continues to be discussion and debate about vaccination. Because this is not the proper forum for this debate, I am deleting this thread, as well as any subsequent discussion about this topic in this community.

The advertisement was to put both SafeMinds and their position in the public eye. Those who wanted to could then read more on the SafeMindsFlu.org website. Here is an example of what you will find there. Under the heading “If You Are Pregnant or Have Small Children . . .”

Look at the evidence and decide if you consider the influenza virus a true threat to your family. Also consider the evidence regarding, the effectiveness of the flu vaccine in actually preventing influenza.

If you do decide to vaccinate, insist on mercury–free influenza vaccines for yourself and your children.

Do not combine the flu vaccine with other vaccines.

Do not let yourself be pressured into receiving a vaccine that you don’t want; insist that your doctor or pharmacist find you a mercury-free vaccine

Let’s look at those points.

1) “Look at the evidence and decide if you consider the influenza virus a true threat to your family.” Well, unless you are immune to influenza, then, yes, it is a threat to your family. The question is how much of a threat, not whether it is a threat. The second part is valid, consider the effectiveness of the vaccine. I would add, consider that any medical procedure, including vaccines, carries some risk.

2) “If you do decide to vaccinate, insist on mercury–free influenza vaccines for yourself and your children.” Sounds like they’ve made up your mind for you on the mercury discussion.

3) “Do not combine the flu vaccine with other vaccines.” Why would that be? Especially, why would that be from the position of mercury exposure? If, as SafeMinds claims, this discussion is about reducing the exposure to mercury, why avoid, say, a mercury free flu shot in combination with a mercury free measles/mumps/rubella shot?

4) “Do not let yourself be pressured into receiving a vaccine that you don’t want; insist that your doctor or pharmacist find you a mercury-free vaccine “. But do let yourself get pressured by SafeMinds, as they have already made up your mind that you must have mercury-free vaccines.

SafeMinds goes on:

All vaccines pose some risk, with or without mercury content. However, the influenza vaccine is of great concern, as many brands contain high levels of mercury. SafeMinds recommends that consumers read package inserts for any vaccine prior to immunization.

No idea given as to what constitutes a “high level” of mercury. Given that SafeMinds bills themselves as an autism organization, one would assume that flu vaccines have a low level of mercury. Why? Because the level of mercury in a flu vaccine doesn’t cause autism. (It is worth noting that no level of mercury exposure has been shown to cause autism).

There are valid questions that should be raised about any medical procedure, vaccines included. One reason why SafeMinds gathers so much criticism is that they do not act as a vaccine safety organization. Instead, they are an organization which uses vaccine safety information and questions.

SafeMinds cites studies in Pediatrics, some authored by employees of the CDC or vaccine manufacturors to support some of their claims that the influenza vaccine may not be effective in pregnant women and their infants. Those familiar with SafeMinds will find this ironic as any of those affiliations appear to be a basis to immediately disregard any paper that goes against the SafeMinds positions.

Another example of the methods used by SafeMinds which are deservedly criticized is their approach to the issue of the flu-mist vaccine. They give citations which conclude that the flumist vaccine (which is thimerosal free) is more effective than the injected vaccine. However, SafeMinds stops short of a clear statement such as, “Ask for the nasal spray version of the vaccine”. Why? They have no problem making a clear decision for their readers in regards to avoiding mercury. Why not recommend a vaccine that they claim is safer and more effective? Why not recommend a vaccine? Many critical readers would question whether SafeMinds is, as they would like to say, an organization promoting safer vaccines or if they are, instead, an organization which can not bring itself to recommend a vaccine because they will not support a vaccination.

Can you “get the facts” from SafeMinds? Well, you won’t get all the facts in any place as there is so much material. But, one paper I couldn’t find on the SafeMinds website was this very recent one:

Eick, A., et al, Maternal influenza vaccination and effect on influenza virus infection in young infants.

Here’s the abstract:

Objective To assess the effect of seasonal influenza vaccination during pregnancy on laboratory-confirmed influenza in infants to 6 months of age.

Design Nonrandomized, prospective, observational cohort study.

Setting Navajo and White Mountain Apache Indian reservations, including 6 hospitals on the Navajo reservation and 1 on the White Mountain Apache reservation.

Participants A total of 1169 mother-infant pairs with mothers who delivered an infant during 1 of 3 influenza seasons.

Main Exposure Maternal seasonal influenza vaccination.

Main Outcome Measures In infants, laboratory-confirmed influenza, influenzalike illness (ILI), ILI hospitalization, and influenza hemagglutinin inhibition antibody titers.

Results A total of 1160 mother-infant pairs had serum collected and were included in the analysis. Among infants, 193 (17%) had an ILI hospitalization, 412 (36%) had only an ILI outpatient visit, and 555 (48%) had no ILI episodes. The ILI incidence rate was 7.2 and 6.7 per 1000 person-days for infants born to unvaccinated and vaccinated women, respectively. There was a 41% reduction in the risk of laboratory-confirmed influenza virus infection (relative risk, 0.59; 95% confidence interval, 0.37-0.93) and a 39% reduction in the risk of ILI hospitalization (relative risk, 0.61; 95% confidence interval, 0.45-0.84) for infants born to influenza-vaccinated women compared with infants born to unvaccinated mothers. Infants born to influenza-vaccinated women had significantly higher hemagglutinin inhibition antibody titers at birth and at 2 to 3 months of age than infants of unvaccinated mothers for all 8 influenza virus strains investigated.

Conclusions Maternal influenza vaccination was significantly associated with reduced risk of influenza virus infection and hospitalization for an ILI up to 6 months of age and increased influenza antibody titers in infants through 2 to 3 months of age.

So, vaccinating a pregnant mother reduces the risk of the infant getting the flu (and getting hospitalized as a result). That is contrary to the message I see coming from SafeMinds. They do host another, older study that showed no statistically significant difference in children of vaccinated or unvaccinated mothers. Will they update their webpage to include this new study?

SafeMinds does bring up some valid questions on vaccine safety. And, contrary to how they like to present the discussion, vaccines (and all medical procedures) are not above challenge. However, they tend to use safety questions more as a tool rather than as honest discussion points. Perhaps I missed it, but can you find them bringing up these questions? How can we make influenza vaccines more effective? Isn’t that a laudable goal? Isn’t a universal influenza vaccine be a good goal, rather than the current method of trying to guess which specific strains will be in circulation for the upcoming season? Why haven’t simple safety improvements been made sooner. Changes such as the move to cell-based cultures over egg based cultures which run the risk of allergic reactions. Note that a new flu vaccine plant was being built in the US which would make the move to cell based cultured vaccines. Instead they concentrate on mercury and autism–mercury being the most thoroughly studied vaccine ingredient when it comes to autism (as in, multiple studies, large studies, good studies, have failed to find a link).

The arrogance of the Autism Treatment Trust

26 Nov

Earlier this week, Anthony wrote about the Autism Treatment Trust and their arrogance in assuming that association with a Nobel prize winner meant their untested therapies were suddenly OK to use.

Today I discovered that their arrogance extended to ignoring the law in the services they offer.

According to their website:

…if you are in need of respite, please contact us and send us a short outline of what your needs are.

The provision of Respite care in Scotland is taken very seriously by the government. So seriously that it set up something called the Care Commission. The Care Commission is there to:

The Regulation of Care (Scotland) Act 2001 (the Act) established a system of care regulation in Scotland. The Act‘s purpose is to provide greater protection for people in need of care services. We are required by the Act to regulate certain care services.

with one of those service being _’Short breaks and respite care services’_ .

One of the great services on the Care Commission website is the ability to check whether a service is registered with them or not. I invite you to do it now – why not check to see if the Autism Treatment Trust is registered?

In fact, I’ll save you some time. They’re not.

Before I blogged this I wanted to be absolutely sure of two things:

1) That the Autism Treatment Trust were definitely not registered with the Care Commission
2) That the Autism Treatment Trust were definitely offering respite.

I tackled the second point first. As members of the Autism Treatment Trust know who I am I decided to assume a false identity and email them. I asked Autism Treatment Trust if they could offer me respite care. The response was:

Thank you for your interest in the Autism Treatment Trust. We have respite care by some of our professional volunteers. This is free of charge, however you would have to cover the travel costs of the volunteer. Some of the respite is offered at the clinic after school or on a Saturday.

So that took care of that – Autism Treatment Trust were definitely offering respite.

To tackle the first point I contacted the Care Commission and asked them if the Autism Treatment Trust were registered with them, as they must be by law. They were not.

Autism Treatment Trust are flouting the law in Scotland. As a autism parent I went on to report them to the Care Commission. The Duty Officer I spoke to was very interested and confirmed that Autism Treatment Trust were definitely breaking the law and that steps would be taken. These steps would include an investigation of Autism Treatment Trust and the forced cessation of offering respite care.

UPDATE

I recieved this email from the Care Commission earlier:

Following your enquiry regarding Autism Treatment Trust I have spoke with the organisation’s President and a doctor working in the clinic. They have confirmed that the respte on offer is where a volunteer (Disclosure Scotland checked) provides activities in the young person’s home while the parent is in the home. The volunteer does not carry out any personal care or administration of medication. Given these circumstances the organisation would not be required to register as a care service.

I have advised them that if they develop their respite to enable the parent to leave the home then they would need to apply to the Care Commission for registration

My response

Dear ******,

That is not what the service was described to me as. The email I received clearly states:

_”Some of the respite is offered at the clinic after school or on a Saturday.”_

Are parents present during this activity?

Update No.2

The relavent page on the ATT website has now changed from its content this morning. This morning the content was as this screenshot (click for bigger):

The content now reads (click for bigger):

Hope and False Hope

25 Nov

Hope. It’s a wonderful thing, and something that parents of children with autism deserve to have in their lives. Fortunately, science shows that there is very good reason for hope. It shows that children with autism continue to learn and develop throughout their lives. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765385/
http://www.ncbi.nlm.nih.gov/pubmed/15666341

But false hope is another matter. As we saw in my guest blog Truth and Consequences – The Anti-Vaccination Movement Exacts a Price from last year, “biomedical support groups” for autism, so prevalent and so active on the internet, provide a sense of hope and community for parents of children with ASD. But, that hope is not real. The case of “Mary” and her son “Saul” illustrates this – Mary joined a multitude of groups, and tried dozens of “treatments” only to be left poorer. And her child, at age 8, had not “recovered”, but still exhibited many of the challenging behaviors which he had at age 2.

Mary is a bit unusual because she has persisted with “biomedical autism treatments” for 6 years. The typical cycle of membership on such “biomedical support groups” is much shorter. A new parent joins, and attempts to follow the protocol or the advice of the other parents, but if this approach does not help their child, the parent simply abandons the group, usually without comment. However, there are always newly diagnosed children, so one sees a continuous influx of new parent members, asking the “newby” questions. Typically, there is a core of self-proclaimed “go-to” people in the group who have devoted themselves to advising these parents.

The purpose of this blog post is to introduce you to one such “go-to” person, a woman called Dana, a resident of California, and the owner of a website http://www.danasview.net.

Here’s how Dana describes herself:

Hello, my name is Dana and I am 41 years old. I am an attorney, I am married, and I have four children. I homeschool all four of my children, and I do legal work part time from home.
When my second child was diagnosed with autism at age 3, I began searching the internet to learn more about him and who he is, and I was surprised to discover that I also qualified as AS, which I will use here to refer to Autistic Syndrome although I am aware it is used for other uses as well. My third child would probably qualify as PDD, but I have not pursued an official diagnosis for him. My first and fourth child are NT.

Notice that Dana makes it clear that she has no medical background, and she is always careful never to present herself as a medical professional. Nevertheless, she has a lot of credibility on the “autism biomedical support groups”. The reason for this credibility is that she is supposed to have “recovered” her second child, or rather both her second and third children. Here is how she describes her second child in 2001 when he was 5 or 6:

My son’s pedneuro told me that he was very low functioning, never developed at all, classic genetic Kanner’s autism, that my best hope for him would be assisted living in a group home some day. Now my son no longer qualifies as autistic, he will be productive and independent some day, and all of it is because of information I read in books and on the internet. Keep going, you are doing the right thing, as you now know!

Wow! a child who no longer qualifies as autistic! That was pretty impressive in 2001, and it made Dana into an authority on biomedical treatments. However, the story has changed quite a bit over the years:
2003, age 7-1/2

My son was not as old as yours when I started biomedical, altho he was older than most kids I read about. He was age 4 when I started, now is age 7-1/2. When I started biomedical, he basically did not tolerate anything.

He is nearly recovered, his last issue is language delay, all his other issues are gone. Chelation was the intervention that provided the final measure of recovery. I did a few other things along the way, but with chelation he can eat all foods now with no problems, he never has a yeast issue any more, stims only very occasionally and voluntarily stops almost immediately. He is now working on catching up with his language delay.

2006, age 10

My son has a Kanner dx, autistic from birth. In reality, he was injured from my dental amalgams plus HepB vax at birth. I chelated him with ALA, and he is almost biomedically recovered now [chelation being one part of that recovery]. Still developmentally delayed, but catching up.

2008, age 12

Well, when he was 3, the pedneuro told me he would never talk or even acknowledge my existence. Today he is 12 and just completed a first grade program. He talks, he reads, he does simple math, he loves giving me hugs, he calls us “mommy” and “daddy” and says “I love you” and lots of other things. He plays well with his siblings, defends them when we gang up on them to tickle them, is concerned when they get hurt, and he is the only child I have who will do his chores without prompting or complaining.

Because he is so far behind and is already 12, I don’t know if he will be age appropriate. But so far I am pleased with his progress. He has gone from “classic Kanner’s autism, severe, low functioning”, to not qualifying as autistic, but definitely developmentally delayed.

2010, age 14

My son has a dx of “classic Kanner’s autism, severe, low functioning”. The pedneuro who dx him, told me he would never talk or even acknowledge my existence. He said his first word at age 6, after I added digestive enzymes.

The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful.

Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much.

To me it’s clear that her second son is not actually “recovered” from ASD.

Dana is an amazingly prolific poster. When using the handle “danaatty”, between 2001-2003, she made a total of 9882 posts to just four yahoo groups, abmd, Autism-Mercury, EnzymesandAutism and GFCFKids. In 2003, she adopted the handle “danasview”, and since has made a mind-blowing 48,187 posts to just three groups, with the largest number, 23,705 posts to GFCFKids. That’s an average of 17 posts per day, every day, for 9 years!

Dana blames vaccines for her childrens’ ASD, even though she recognizes that she herself is also on the spectrum. And like most parents who blame autism on vaccines, she has an obsession with eliminating both viruses (presumably the residual measles virus from vaccination) and mercury (from thimerosal containing vaccines). There is absolutely no clinical evidence for any of her recommended protocols. Everything is based on her reputation as a parent who has “recovered” her children.

When viewed in isolation, a single piece of her advice may seem reasonable. However, a small sampling of her posts taken together shows a different story. Here are some symptoms that Dana has blamed on viruses or on viruses leaving the body:

plantar warts
molloscum contagium
yeast, which causes constipation
goopy green eye discharge
major red rash
dry patches of skin
bad case of the “chewies”
visual stims
pushing finger joints and cracking knuckles
OCD
low white blood cell count
loud talking
mouth sores
language difficulty
high fever
sore throat
runny nose
aching bones
fine bumps on chest

In Dana’s view, some symptoms of mercury poisoning are:

dilated pupils
headaches
neck pain
sinusitis
asthma
ear infections
tingling down arms/legs
urinary incontinence
jitters
restlessness
can’t sleep very well
heart palpitations or weird feelings around heart
fungus on feet
pain in jaw
ears popping
pressure in ears
pain in intestines/bowels when exercising
food intolerances
lazy eye

Conventional “autism biomedical” wisdom is that “yeast infections” are common in autism. And that “yeast infections” can result from either anti-viral “protocols” or chelation. According to Dana, some of the symptoms of “yeast” are:

symptoms of Tourette
OCD
anxiety
dark circles under eyes
squinting eyes
needing to chew things
eating plastic and rubber
persistent nail biting
redness/bumps around the mouth
sinus infection
hitting oneself
hitting one’s ears
head banging
making pig noises and snorting a lot
standing on the head
hands always in mouth
severe dandruff
biting a parent
yellow bowel movements
yellow finger nails
pee accidents
tics
crying uncontrollably for 20 minutes or more
cystic acne
constant high pitched vocal stims
non-stop talking
low grade fever
loose sounding cough
ringing in the ears
dizziness
constipation
humming
licking things
hyper and giggling
laughing hysterically
flying into a rage
sleep problems
problems falling asleep
sleep walking
teeth grinding
stinking armpits in a five year old
spinning around in circles
balance issues
chapped lips
extra bad handwriting
visual stims
sexual behavior
red ring around the anus
“spaciness”
anger and aggression,
headache
head banging
sound sensitivity [holding the hands over the ears]
climbing on furniture and jumping off
vestibular sensory issues
and
multiple personalities

It strains credulity that such a diversity of symptoms could possibly be attributed with such precision to only three causes. In fact, there are very few things Dana will NOT attribute to these three causes. For example:

Q: What can cause low white blood cell + low red blood cell count? A hematologist has performed blood tests and ruled out antibodies (lupus, rheumatoid arthritis, etc) and now wants to proceed with a bone marrow biopsy. He appears to think he has ruled out everything else and is now looking for Leukemia or Lymphoma.
Could mercury/metal exposure cause these symptoms? Anything else?

A: It is very possibly a mercury toxicity issue. May also be related to a latent virus issue.
Dana

Dana on viruses:

He had a wart that did not go away with high dose vitamin C [which eliminated a lot of cold/flu viruses in his brain], so I tried lysine, which caused more gains.

I watched a cold virus migrate into my son’s brain once. And after starting
anti-virals, I watched the viruses come out one by one.

The above four supplements (Vitamin A, vitamin C, vitamin D, and lysine) eliminated my son’s viruses, they no longer lie dormant.

Dana on food intolerance:

At my house, controlling yeast and bacteria was required to stop raging. Also, most of the SCD-legal foods my son did not tolerate. He tolerated nothing orange or green, and he did not tolerate fats until mito cocktail. That would have caused major problems for him.

Dana on short stature:

One of my kids had this problem. He needed carnitine and thyroid support.

Dana shows her knowledge of chemistry:

Arginine and lysine are “opposites”, sort of like zinc and copper. If
you suspect a herpes virus issue, definitely do NOT give arginine, it will increase the virus.

Dana on yeast:

The yeast is in his head/brain, not in his GI tract. This happened with my son for a few years. Just because you don’t see signs of yeast in the bm/GI tract, does not mean yeast is not present in other areas of the body.

With her prolific posts and her continuous flow of “biomedical autism treatment” advice for parents, Dana has established herself as a guru. She is one of the key people personally responsible for encouraging parents to subject their children to unproven and potentially dangerous experimentation. According to the Office of Dietary Supplements, consumers in the USA spent $20.3 billion on dietary supplements in 2004. Someone is getting rich on her advice.

Addendum:
In researching this story, I encountered something astonishing. Remember “Mary” and her son “Saul”? Saul is very clearly NOT recovered despite all the experimentation performed on him. The ultimate irony was to see “Saul” featured on Dana’s website, touted as an example of a chelation recovery!

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