[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Claire Spencer]

Regarding the Denmark study of MMR/Autism link. In a nutshell, the kids in Denmark didn't have the same exposure to Thimerosal (a preservative found in DPT vaccines, flu shots, etc., as children in the USA and presumably Canada. Denmark also has a lower rate of autism that North America. Coincidence?

Claire (Trevor's Mom)

[From SafeMinds.]

Denmark Study on Autism and MMR Vaccine Shows Need for Biological Research

Cranford, NJ – The newly released study on autism and the
measles-mumps-rubella vaccine ("A Population Based Study of Measles, Mumps
and Rubella Vaccination and Autism." New England Journal of Medicine, Vol
347, No 19; Nov 7, 2002: 1477-1483, by Kreesten Meldgaard,et al) is a
welcome addition to autism epidemiology. Unfortunately, the study
conclusions appear overreaching, claiming that this analysis is the final
word on autism and vaccines and implying that more research on the topic is
unnecessary. Safe Minds asserts that other vaccines besides MMR may be
involved in autism, and that only biological research, not epidemiology, can
answer the question of whether the MMR vaccine plays a role in autism.
"It is important to note that the study only focused on the MMR
vaccine, and not vaccines also implicated in autism which contain the
mercury preservative thimerosal," explains Sallie Bernard, executive
director of Safe Minds. "The study also failed to investigate whether the
MMR vaccine might be interacting with the thimerosal from other vaccines to
increase the severity of symptoms in children who already have autism.
Finally, the study did not differentiate between regressive autism, which is
the type being linked to MMR vaccine, and the more prevalent early onset
autism, which is the type being linked to thimerosal."
Safe Minds is an advocacy organization which focuses on the role of
mercury in neurodevelopmental disrorders, including autism. It was founded
by parents of autistic children. Thimerosal contains 50% ethylmercury and
has been used in most recommended childhood vaccines, including the
Diphtheria-Tetanus-Pertussis (DTP), Haemophilus influenzae type B (HiB), and
Hepatitis B (Hep B) vaccines.
Research studies have shown that mercury exposure in utero or during
early postnatal life – the time when thimerosal vaccines are being given –
can cause immune system abnormalities which predispose the child to ongoing
viral infections. It is biologically plausible that this immune disruption
may have allowed the live measles virus component in the MMR vaccine to
persist in susceptible autistic children, making the symptoms of the
disorder worse. This connection would not be detected through an
epidemiology study like the Denmark one. Nor does the Denmark study have the
power to detect differences in rates of regressive autism between vaccinated
and unvaccinated children, since the number of regressive cases – estimated
to be 10%-20% of all autism cases – would be too small.
"The overreaching conclusion of the study should not obscure other
important findings from this extensive and well planned analysis from
Denmark," continued Ms. Bernard. "The authors report an increased
prevalence of autism in that country, and thus it supports other recent
studies that are also showing increases. This rise tells us that an
environmental agent is at work worldwide that is driving this trend. We
believe that thimerosal and environmental mercury – which are worldwide
pollutants – are behind the surge. Also, Denmark has had lower and later
exposures to thimerosal in vaccines, and the report shows that their rate of
autism is lower than in the US, which is also consistent with a thimerosal
connection."
Safe Minds is encouraged that the Centers for Disease Control
sponsored such an extensive study on autism, which shows that this terrible
disease is finally getting the attention of public health officials. Safe
Minds looks forward to increased support for autism research, especially at
the biological level.
For more information, contact:
Sallie Bernard Executive Director Safe Minds 970 429-1460
sbernard@nac.net

[Michelle Weis]

November 7, 2002 – Hamilton Spectator

No link between autism, MMR vaccine

A large study from Denmark offers reassuring evidence that the widely used measles, mumps and rubella vaccine does not cause autism.

Some studies have speculated that the measles portion of the vaccine might trigger autism, in part because autism often becomes apparent during the second or third year of life, around the same time the shots are given. But several large studies have found no proof of this, and the latest of these was published in today's issue of the New England Journal of Medicine.
Dr. Kreesten Meldgaard of the Danish Epidemiology Science Centre in Aurhus reviewed the records of 537,303 children born in Denmark in the 1990's. The risk of autism was the same for those who got the vaccine and those who did not. Autism cases have risen substantially in the last 20 years, although some speculate this is a result of better recognition of the disorder, not a true increase.

[Deleted User]

I don't know if this is a major bone of contention with families on this list, but just wanted to add something ( since I missed the original post of concern?)about therapists going on to become consultants.

Bridget Taylor was once a "therapist".

I for one am thrilled to know that home grown guys and gals love this work and our kids enough to spend years in proper education programs like North Texas to give back to Canada and the high need we have for qualified and bonifide consultants.

I am very appreciative of our brothers and sisters to the south of us who offer their services to our children due to the current lack of expertise in the area of consulting that plagues this country. I wish our doller were at par. Their insight and expertise while priceless is unfortunately quite pricey.

As a parent myself I realize we live in a world of hyper vigilance. I think though it would behoove us to encourage bright young stars to invest not only in their futures but to invest in our children's futures and surely the thousands and thousands more that will come, given the stats of increase in ASD.

Ultimately it will ALWAYS be our responsibility as parents to ensure the qualifications and expertise of ANY health care or treatment professional working with our children, from peds to neurologists, dentists and ABA consultants.
If you do your job properly, your child will most likely be in good hands. There will always be some of us who have negative experiences, and they are deeply felt when the affect is upon the child. I believe it is critical to the development of Bonifide ABA consultation in Canada that we not only look to the program for example at North Texas to implement here, but to assist those who are willing to take the YEARS to become what our children in this country desperately need. Caring, qualified and bonifide ABA consultants.

Best Wishes to my BC friends
norrah whitney

[Tyla Frewing]

Re: Anonymous concerned about therapists "planning" on becoming consultants.
I, like Janna, am also a therapist who has the *eventual goal* of becoming a consultant. I am completing my BA in Psychology, and have been in correspndance with representatives from various graduate programs, and attended the International Association for Behavioral Analysis conference with the chief aim of looking into ABA graduate studies, and learning. All the therapists that I have known/know that are working towards becoming a consultant are those who are VERY aware that they are NOT consultants. They are those planning an educational path that includes a masters in applied behavioral analysis, with specific supervised training in its application to working with children with autism. These therapists are NOT the ones you, as a parent need to be concerned about, they are doing (or will be doing) graduate studies and training at reputable universities – which, I might add, will often be those in the United States requiring relocation, and significant financial means. No, we don't deserve a medal for this, that is not the point, what it should indicate though is that we are willing to do this because we want good training and credentials under qualified, experienced professionals in the feild of ABA. Parents need to be concerned about therapists who are not planning these studies, or, who are working at a level beyond their qualifications. Also, note the fact that there have been several therapists from this area who were once, like myself, "planning" on becoming consultants – they went to grad school, and further training and have either come back here as qualified consultants (for example, Rachel Russel), or are continuing their post-graduate studies. I am sure that Janna, as well as others who are planning a similar path to myself would NEVER consider deeming themselves consultants without the necessary qualifications. Hope this puts your mind somewhat at rest.
-Tyla Poirier, ABA therapist.

[Deleted User]

I am curious about how many young people you are referring to. To my knowledge, the only therapist to recently post regarding an intention to become a consultant was myself.

To set your minds at ease, allow me to state my education and future plans. By no means am I expecting to become a consultant at any time before 2006.

I currently hold a Bachelor's degree in Music Composition from the University of Calgary. I also have a 3-year degree in Psychology from Lakehead University in Thunder Bay.

Beginning next fall (September 2003), I hope to begin correspondence courses from Athabasca University in Psychology, in order to receive that fourth year qualification I am currently lacking and to raise my GPA to a suitable level. I'd also like to take a few counseling courses along the way. I expect this to take at least one year, possibly two.

After I have completed this coursework, I expect to enrol in the University of Northern Texas' ABA Certification Course. It's a correspondence course and will provide me with all of the necessary academic background to qualify to sit for the BCBA exam (previously mentioned). At the same time as I am doing the coursework from UNT, I hope to be completing the mentored programming requirement for said exam. This mentored programming is meant to be at least 20 hours per week of running programs as a consultant, under the direct supervision (mentorship) of a consultant who is either Board certified or qualified to sit for the exam.

Once I am qualified to sit for the exam, I will probably decide where I want to go in order to 'set up shop' as a consultant, move there, begin to get myself established, and, as soon as humanly possible, write and pass the exam.

In the meantime, I work as a line therapist on two teams and a lead therapist on a third, as well as providing respite care for an older autistic child (through the North Shore Association for the Mentally Handicapped). I've been 'doing ABA' since August 1999, and I am now 26 years old. I don't expect to become a consultant before my thirtieth birthday.

I hope that sets some minds at rest.

-Janna (if you want to find out more about me, feel free to check out my web site at http://www.crosswinds.net/~jlhasd)

[Deleted User]

Feat Members:

As I read the posts and hear stories from the different families, it seems that there are many young people here trying to become 'consultants'; most of whom have no academic credentials beyond a B.A. in a related discipline(if even that!)

Is anyone else here concerned about this? I worry that, in the absence of enough properly-trained, graduate-level behaviourists, many people are or will be setting up shop as 'ABA consultants' when they really have no business doing so.

I'd like to hear your views on this.

[Deleted User]

Dear Listies

Look to the Province of Ontario. Look at the significant if not disasterous problems of the IBI program. The province of BC is modeling after the Ontario program.
They have already
1. tried to create bottle neck multi-diciplinary and in many if not almost all cases, diagnosing "teams" from selected "government contractees"
RED FLAG NUMBER 1
2. Individualized "program options" /Individualized "funding option"
punative in many cases rather than beneficial
RED FLAG NUMBER 2
3. Province wide training by SOLE trainer or contract
there are HUGE dangers in this.
RED FLAG THREE
what do you call a doctor who graduated at the bottom of his class?
* doctor *
not all trainers are created equally, nor are training programs
I smell lucrative government contract here, but as we have historically witnessed in other areas of management of Autism by provincial governments it is often the lowest bid in that gets the cash cow.
ONE TRAINING INSTITUTE MUST BE BLOCKED.
Not all children with Autism respond the the same forms of treatment.
To clarify what I mean is given that 99.9% of children will respond favourably to ABA within that group some will do better with no no prompt , versus errorless learning, some will do better with randomized trials vs 10 trials.
Even within well established health care protocols there is diversity within treatment.
Are all Cancers equal? They are all cancer, but yet have different treatment protocols that reflect the individual's case and other variable factors.
TRUE high quality training will come from allowing REAL individualized funding with CONSUMERS/PARENTS demand for services. MANY VERY reputable ABA US providers will move to BC in a HEART BEAT if the business is there. I know because I have spoken with many who are willing to come and basically set up almost Lovaas like replications sites or clinics bringing up their people and training Canadians until there is a huge pool of diverse high quality therapists and consultants to choose from AS WE CHOOSE OUR DOCTORS.

Just some things to think about. Just remember BC is looking to Ontario. See what has happened there to avoid the same major pitfalls.

[Deleted User]

""MSP has no idea of how to provide for our kids. I think irregardless of how we look at it, training has to be involved. The question is: by WHO (and who profits)? We don't have the staff in the province but we don't need more of the same stuff we already have (EIBI made in BC).""

Well if we train anybody let's train MSP to add selected Lovaas consultants to their billing. Let them set up a billing number to submit to MSP. Training costs money no matter how you look at it, I suggest training MSP. If we all have a limit that's okay.

[Pete Stelmaschuk]

Families know who the good Consultants are:

They are the ones that stuck with us through this battle (and of course have the proper credentials).

We need to make our voice heard to the government.

[Bohdanna Popowycz]

I too would like to add a few thoughts in respect to Consultants/Supervisors. Working with children with autism is a great honor that comes with much responsibility. These responsibilities lie in making correct judgement calls on a particular child's programme and behavioural plans. It is key for a programmer to have several (if not all) of the below qualifications.
1. Work as a line or lead for at least 2 years under a qualified Consultant.
2. Accumulate approximately 2000 hours of this time working with a variance of children to improve programming skills, observe Consultants in trouble shooting difficult areas, and work closely with parents in building a generalization programme.(2000 hours based on Lovaas training curriculum)
3. Enroll in a training programme that focuses on principles of ABA under a certified centre/facility. This programme should be rich in DTF education, communication, play/social programming and teaching individuals to manage and work with a team of people.The programme should also focus on building of cooperation/behaviour skills as well as advanced programming for school readiness. Tailoring a programme for the individual child can never be simply photocopied out of any book!
4.Level 1 certification, meaning the deliverance of clear concise programming (i.e. implementation and passing scoring of a quality control one-on-one video tape) by a Lovaas replication site.
5.A multi-supervisory approach is also a key factor. Having people/resources that can be tapped into when working with children and assuring quality programming.

Although the above does not encompass all the qualities of a good Supervisor I hope it gives some ideas of what parents can look into. Parents and children with autism deserve a programme that helps the child reach their best potential.

I wish the families in BC continual success in their fight for quality services and funding!

Bohdanna Popowycz Kvam

[Author]

Replies