[FEAT BC Admin]

This area is for discussions in general topics.

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[Deleted User]

Hello Everyone,
My husband and I are needing your help. Our daughter(3 years old) has just been diagnosed and we are trying to put our team together. As we are noticing very quickly, it is difficult once you parachute into this world of Autism to try to find decent and honest people to truly help your child. Everybody tells you something different and my "gut instinct" that I thought was once very sharp is now becoming very foggy and tired. So as desperation sets in, can anyone please e-mail us and recommend some consultants that have a long and healthy reputation in the field. Please tell us why you are recommending this person or group, even if you know they have a waiting list.
eagermind@shaw.ca

[Amber Himmelright]

I am looking for Sequencing Flash Cards. Does anyone have any they would be willing to sell to me, or can anyone tell me which store I could find them at? Thanks.

[Rachel Russell]

Autism Speaks Joins Florida State University and First Signs in Launching First-Ever Web-Based Autism Video Glossary
An Innovative New Tool to Help Parents Recognize the Early Signs of Autism Spectrum Disorders

http://www.autismspeaks.org/press/video_glossary_launches.php

these are a set of very useful introductory video clips showing children with typical development and children with autism performing the same tasks – shows common behaviors exhibited by children with autism that might be useful for parents or clinicians not familiar with autism spectrum disorders.

[Dione Costanzo]

Hi everyone,

I have just connected with a mom in New Brunswick that has a new diagnosis and is looking for information. Does anyone know a family in NB who is running a program who she may be able to connect with?

Please email me dionec@shaw.ca

Thanks
Dione

[Diane Slootweg]

Hello Everyone,

This month's Mid-Island ASBC meeting will be held on Wednesday Oct. 17 at 7pm. The topic of the meeting will be Participation in Leisure activities. Our guest speakers will be Michele Duerksen, Special Needs Coordinator for Nanaimo Parks and Recreation and Cathy McKenzie from the Parksville/Qualicum district. Learn more about programs available in our communities. Come with your questions, share your experiences, and offer suggestions for what you would like to see.

Please note the new location of the meeting.

Mid-Island ASBC Parent Support Group Meeting
Wednesday, October 17, 2007
7-9 p.m.
Multi Purpose Room, McGirr Elementary School, 6199 McGirr Road, Nanaimo. Please enter using the outside entrance.

This meeting is open to parents and family members.

Please reply if you plan to attend so that we may arrange for refreshments.

Also, let me know if there are any topics that you would like to see discussed at future meetings

You can contact me at midisland.asbc @ gmail.com without the spaces

Looking forward to seeing you there.

Diane Slootweg

[Mike & Jean]

By Mike & Jean (Lewis) on Saturday, October 6, 2007 – 5:51 pm:
We must remind parents once again – this board is ONLY for parents who are running Lovaas-style ABA programs which are being supervised by properly credentialed Behaviour Consultants. In other words, only Behavioural Consultants which FEAT of BC recommends. This DOES NOT include Verbal Behaviour or Fluency based ABA programs. You must identify your Behavioural Consultant in your posting or it will be removed and your posting priviledges will be withdrawn. On a similar note – discussion regarding alternative treatments and therapies should not be conducted on this website. We ask that everyone using and taking advantage of this free FEAT of BC service read and respect the guidelines.

Thank you for your cooperation.

[Todd Dea]

Hi,

I was wondering if anyone was planning on attending the NAA's Autism conference in Atlanta this November.

http://www.nationalautismconference.org/index.htm

My wife and I are thinking about going. If anyone is planning on going OR has been to one of these in the past we would love to hear from you about your impressions or thoughts.

please contact us at onedea@shaw.ca

[Norm Tailless]

Hi Dave,

I haven't found an explanation regarding the mechanism for propionic acid reaching the brain either. I thought the theory explaining the link between gluten/casein and autistic behaviour was that their protein by-products (peptides?) can pass through the intestinal tract because of digestive problems. In that case, the idea of testing the child's urine for these proteins before trying the gluten/casein free diet makes sense (this is what we did and our son’s urine was normal). According to this page http://www.autismcanada.org/glutensugar.htm when you do that the control study showed a link between diet and autism and when you don't the link is not so clear (but I haven't read the original articles).

But I did read (http://cat.inist.fr/?aModele=afficheN&cpsidt=1267796) that a treatment with Metronidazole can have a significant reduction in the gut species that produce propionic acid (I don't really know if that's good for you though, since Metronidazole also kills good intestinal flora).

What I find puzzling is that none of these significant recoveries based on restricted diet are compatible with the observations regarding major brain structure differences (in terms of size of neurons, proportion of grey matter v.s. white matter, or size of minicolums, etc) in autistic people which is believed to be a source of communication bottleneck. There are lots on this topic: e.g. http://www.awares.org/conferences/show_paper.asp?section=000100010001&conferenceCode=000200010005&id=10
I can’t imagine any kind of diet would change brain structure or neuron size.

So, it seems to me that there are at least two independent mechanisms leading to autistic behaviour. One seems to be caused by food allergies and the kids who benefit from diet restriction also tend to also display gastrointestinal problems. The other mechanism seems to be a problem with the brain circuitry and these kids do not benefit from the “miracle” of restricted diets…and I am afraid those of us moms/parents with kids that fall into this category are never going to be hailed as “miracle moms” with miraculous recoveries of our kids.

It seems to me these two mechanisms need to be separated before the correct treatment can be discussed. However, I don’t find any research supporting my theory.

What is your opinion based on your research?

Thanks,

A mom – tailatrophy@yahoo.ca

[Dave Collyer]

Hi Jemma,

I agree with your observations but find it an interesting bit of work in itself ( the paper is here if you want to join me in disection: http://www.autismcanada.org/pdfs/MacFabe06.pdf ) The process of direct injection raised a question mark for me to. I know little of propionic acid… can it arrive in the brain via ingestion or less direct injection (some substances cannot… dopamine for example… L-Dopa is given instead as it can pass the blood brain barrier as dopamine cannot do so easily). Rat models are limited and human trials are called for with random assignement to groups, blind assessors and consistent use of measures (pre and post) etc etc. It is my understanding that the research group at UWO has moved to begin such trials. Can you imagine trying to control for confounds over the long term (I bet almost every child is going to find a pc of bread to snack on at some point).

D.

[Jemma Lee]

Regarding the UWO study: I wouldn't hold my breath just yet. The researchers injected a substance directly into rats' brains, and the rats acted wierd. That's a far cry from finding a link between diet and autism. It looks more like an effortless and inexpensive way to get a lot of attention.

I would much rather see the researchers work with two groups of children, all of which are receiving the same behavioural intervention. The control group gets a normal diet, while the other group gets a gluten-free casein-free diet. After a couple of years, they can compare the progress of both groups.

But who is going to go through all the expense and effort, if there is no guarantee of getting a ton of attention in the media?

Jemma

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