Heading to Halifax for Autism Conference

Another parent and I are heading to the “Advances in the Science and Treatment of Autism” this weekend at Dalhousie University. It is being organized in partnership with the IWK. Brochure can be found here. I will report back with updated information after the conference!

Here is the schedule and speaker bios:

Friday November 6, 2009: Pier 21, 1055 Marginal Rd
5:30-6:30pm: Reception
6:30-7:30pm: Speaker: Dr. Patricia Rodier, University of Rochester, Rochester N.Y.
7:30pm: Dinner

Saturday, November 7, 2009: Dalhousie University
8:00-8:30am Check-In/Reception: McCain Building 6135 University Ave
8:30-9:00: Welcome Jennifer Overton (A Parent’s Perspective)
9:00-9:30: Susan Bryson, Dalhousie U
9:30-10:30: Marcel Just, Carnegie Mellon University, Pittsburgh, Pennsylvania
10:30-11:00: Nutrition Break: McCain Bldg
11:00-12:00: Mathew Goodwin, Massachusetts Institute of Technology, Cambridge, Massachusetts
12:00-1:00: Lunch: McInnes Room , S.U.B. 6136 University Ave
1:00-2:00: Peter Szatmari, McMaster University, Hamilton ON
2:00-3:00: Lonnie Zwaigenbaum, University of Alberta, Edmonton AB
3:00-3:30: Nutrition Break: McCain Bldg
3:30-4:30: Patricia Mirenda, University of British Columbia, Vancouver BC
4:30-4:45: Richard Goldbloom, Dalhousie U

Dr. Patricia Rodier, University of Rochester A leading researcher in the neurobiological origins of Autism, Dr. Rodier shares her research on prenatal environmental exposures.
Jennifer Overton, Actor, Teacher, Author and mother of a teenage son diagnosed with Autism shares a parent’s perspective on raising a child with autism.
Dr. Susan Bryson, Dalhousie University Craig Chair in Autism Research, Dr. Bryson gives an overview of current research on Autism.
Dr. Marcel Just, Carnegie Mellon University, Director of the Centre for Cognitive Brain Imaging , Dr. Just discusses cutting edge imaging research thathas advanced understanding of brain function in autism.
Dr. Matthew Goodwin, Massachusetts Institute of Tecnology describes advances in the physiological basis of arousal in autism, with reference to the role of autonomic nervous system regulation.
Dr. Peter Szatmari, McMaster University Chedoke Health Chair in Child Psychiatry, Dr. Szatmari shares advances in the genetics and epigenetics of autism.
Dr. Lonnie Zwaigenbaum, University of Alberta Co-Director of the Autism Research Centre Glenrose Rehabilitation, Dr. Zwaigenbau, discusses the issue of increasing prevalence of autism and possible links to environmental exposures.
Dr. Pat Mirenda, University of B.C. An expert in Special Education and Communication Disorders, including augmentative and alternative
communication systems, Dr. Mirenda discusses the treatment of autism.
Dr. Richard Goldbloom, Dalhousie University Renowned pediatrician and former Chancellor of Dalhousie University, Dr. Goldbloom gives closing remarks.

 

Our daughter has waited long enough

This letter to the editor was in today’s The Guardian. I hope the public will understand the challenges that families face on Prince Edward Island.

LETTERS TO THE EDITOR
Editor:

There are more kids being diagnosed with autism and it should become a priority.

Our three-year-old daughter was diagnosed with autism in November 2008. We were put on a waiting list for her to start intensive behaviour intervention (IBI) therapy in September 2009. With autism, the younger they are to start therapy, the better. We have spent the last year working with our daughter in all the areas that she has needed help in but the work was worth it as she has made incredible progress.

We looked forward to the help from the pre-school autism team when she started her IBI. When September 2009 came, we were contacted and a tutor was hired and myself and the tutor went to courses that were provided for the therapy. We had appointments booked to start the paperwork but something unfortunate happened and the pre-school autism staff member became ill. We received a call around the end of September telling us that she was still ill and would be out another month (which is now the end of October). I questioned about the return and if she was delayed longer, what would be done. I was told that someone else would be out to observe my daughter. If the team member doesn’t return, someone will have to be hired.

This is outrageous that the wait is so long. Our daughter has been waiting a year and now may have to wait longer. This is the time that the therapy should be happening.

I always wondered why people went off-Island for help and I can see why now. This is a hard enough time for families, to have a child with a condition like this and you can’t do anything about it. The P.E.I. government really has to take a look at this.

Darlene Ellis,

Charlottetown

Government Phone Ettiquette

I am wondering if anyone has had a similar experience with receiving call backs from Government, whether it be a bureaucrat or their elected MLA.  For example, I left a voice message for Ms. Sarah Henry at the end of the day on Friday, September 4th, 2009.  I stated that I would like to speak with her regarding the IBI tutor list that Government has begun to compile.

Almost six weeks have since passed and I am still waiting to speak to Government about the IBI tutor list. What are your thoughts on a reasonable time frame for a call back? 2-3 days? That would be appropriate. Or even a follow up email to ask for my questions so they can be addressed.

Two weeks after my initial phone call, all the Preschool IBI Service families received a letter regarding a negative situation that took place with the Passport to Employment autism trainees. I appreciate the letter of communication regarding this unfortunate incident. Perhaps it was assumed that the questions that I did have were answered in the letter. If this is the case, it has been assumed wrong.

Would I have gotten a (quicker) response if I had not stated why I was calling? I hope other parents do not have to wait a long period of time to get their questions answered.

Very interested to hear how long others have waited….

A Premier’s broken promise.

Eighteen months have passed since I was given hope that the PEI Government was going to create an Autism Strategy for it’s residents. In this May 2008 post, I questioned the reality of an internal autism strategy. To date, the PEI Government has not shared this internal strategy with parents or the Autism Society of PEI.

April 3, 2008

Hi April,

Thanks for your e-mail. I had the chance to take a quick look at your
video. You did an excellent job. Your message was presented in a very
professional, thought-provoking and engaging manner.

I have forwarded your e-mail to both Minister Currie, Department of
Social Services and Seniors; and Minister Greenan, Department of

Education, for information. Both departments are working
collaboratively to update and further develop an Autism Strategy for PEI.

I appreciate your taking the time to share your personal experiences
and comments regarding care and support, respect, and education for
special needs children.

Sincerely,

Robert Ghiz
Premier

Parents’ patience is wearing thin, frustrations and stress is increasing, the prevalence of autism has risen to 1 in 91 children.  When will Government recognize the crisis at hand? When will our children be important enough? Mr. Premier when are families going to be supported with a real strategy? What is a reasonable amount of time to wait for this strategy?

The reality is that the PEI Government began a closed consultation process in the fall of 2008. This statement was made by one Department of Education staff  “The Department of Education and Early Childhood Development, with the Departments of Health and Social Services & Seniors and the Autism Society have been working with HRA to review existing policies and programs, and provide recommendations for action. It may be a period of time before recommendations come from this process, but we can be optimistic the process is taking place.”

This review has been completed for some time, and the report of recommendations has been forwarded to Government, but all members of the committee have not even seen the final report. There was no public consultation process for parents and staff to share their voice.

It is very disappointing to be writing this post a year and a half later with no changes to improve supports for families affected by autism on Prince Edward Island.

Higher intensity of ABA treatment at a younger age leads to faster learning

“Researchers at the Center for Autism and Related Disorders, Inc. (CARD) found that increasing treatment hours within an early intensive behavioral intervention program resulted in greater efficiency in new skill acquisition. This effect was the strongest in younger children within their study.

The study also showed no point of diminishing returns as hours were increased. Meaning that 20 hours per week was better than 10, 30 hours per week was better than 20, and 40 was better than 30. The degree of improvement did not decrease as treatment intensity approached 40 hours per week.”

More on this study here.

Autism affects 1 in 58 boys

The United States Government confirmed today that autism is affecting 1 in 100 children now. Statistics show that boys are affected at a higher rate, and it is estimated that 1 in 58 boys are affected by autism.

So with these new numbers, is the Canadian or Prince Edward Island Government going to do more for families affected by Autism? What does the prevalence rate have to get to before it becomes an “urgent” issue?