Friday, July 20, 2007

Autism Society New Brunswick Accomplishments and Challenges That Lie Ahead

In the course of our lives we may join many organizations from Cubs and Minor League Hockey to Home and School Associations to professional organizations and a variety of charities and groups with good public purposes. I am proud to be, and to have been, a part of an organization which exists and dedicates the time, concern and efforts of its members entirely to the cause for which it exists with no distractions such as salaries or fancy buildings or offices in which to lodge and no conflicts of interest such as government funding of its activities. One example of these efforts are the autism and autism intervention books which ASNB has purchased and donated to the New Brunswick Public Library System and to community autism centres across New Brunswick. The Autism Society New Brunswick has operated out of the home or office of whomever serves as President. It does not pay salaries or honorariums to its directors or any executive personnel. All resources of the ASNB go entirely into materials of direct benefit to the autistic people of New Brunswick that we are pledged to help.

The membership of ASNB is varied including parents, professionals and paraprofessionals but it has always been, with two very notable exceptions, a parent driven organization. The two notable exceptions are Jason Oldford, a person with Aspergers who served as a Board official with ASNB for several years and who provided excellent organizational skills, knowledge in a number of important areas, support for parents and his insights into autism as experienced by him. I first learned of Jason although we did not talk at an autism meeting held in Fredericton on March 17 2001. When Jason introduced himself and spoke eloquently to the entire crowd of parents gathered tears flowed.

The other exception to the parent driven character of ASNB is Paul McDonnell, Professor Emeritus, (Psychology) and a clinical psychologist with a focus on autism. Paul, to my knowledge, is not a formal member of ASNB, he is simply the source of most of the ideas on which we have acted over the years. Paul has worked directly with many autistic children and assisted many agencies seeking to address autism issues in New Brunswick. He helped keep the focus on ASNB on evidence based autism interventions and came up with practical ideas on how to address the autism crisis in New Brunswick. If ASNB has had a good idea from time to time it probably originated with Paul who has educated parents, professionals and public servants in this province with his informed expert lectures on autism and autism interventions.

Apart from these two outstanding exceptions ASNB has been driven largely by parents who have given thousands of hours of their time, their parent derived expertise and concern and their commitment to make changes for the better in New Brunswick. Because of ASNB lobbying efforts New Brunswick, despite its poor cousin status amongst Canadian provinces, has one of the better pre-school autism funding programs in Canada. That does not mean that the monetary limits which restrict hours of intervention and other problems do not exist, simply that the program is good compared to some of our other provinces and for that we can thank the intense lobbying efforts of the ASNB and its parent members. We can also thank ASNB lobbying for the efforts to ensure that the people providing pre-school autism intervention receive decent training which most do through the UNB-CEL Autism Intervention Training program. Again, problems exist, some autism agencies in New Brunswick still utilize untrained personnel and that is simply not acceptable. But the current state is much better than what existed eight years ago and we will continue to work on addressing these issues through ASNB.

A key accomplishment of UNB has been that of obtaining the reversal of the decision to terminate pediatric tertiary care autism services at the Stan Cassidy Centre in Fredericton. Such services address the needs of some of the most challenging and complex issues confronting autistic children. The decision to reverse was prodded by a lobbying effort led by the Autism Society New Brunswick.

In Education the ASNB has achieved some success in encouraging the education department to depart from its rigid adherence to a philosophy that all children must be educated in the mainstream classroom. The ASNB position is that education of autistic children requires an evidence based approach, look at what is best for the child or student in question. Allow that student to learn in the way he learns best where he learns best whether in the classroom or in a quieter location. That evidence based, common sense position however, does not always prevail. There is a powerful lobby in New Brunswick led by the well connected executive director of a community living organization which opposes any attempt by the Department of Education to depart from a philosophy of total mainstream inclusion for every student. The lobby also includes the current Chair of the New Brunswick Human Rights Commission and the learned professor who conducted, within the terms of a restricted mandate, the flawed review of New Brunswick's inclusive education system. ASNB will continue its efforts to ensure that students with autism will be educated in an environment appropriate for that student whether it be the mainstream classroom or a quieter environment within the school.

ASNB has also enjoyed some success in encouraging government to provide quality autism intervention training to the teachers aides who work with autistic students. Approximately 100 have been trained over the years and another 100 are scheduled to be trained commencing in October. A further 300 are expected to be trained over the following three years pursuant to an express commitment by Premier Shawn Graham.

The greatest challenge, however, lays ahead. New Brunswick has an abysmal, almost non-existent system of youth and adult treatment and residential care for autistic persons. The primary component of this system are group homes, run by private, profit driven organizations which staff their homes with untrained personnel and have been known to skimp on basic dietary requirements, feeding autistic residents low nutrition, high carbohydrate diets. There is no oversight to speak of for these group homes. If a confrontation arises between an autistic resident and an untrained staff member there is no one to corroborate the autistic resident's story and no one who can determine whether a situation might have been provoked by a staff person ignorant of autism. Beyond the group homes there is Centracare a mental health hospital in Saint John and beyond that New Brunswick sends its most difficult challenged autistic youths and adults to facilities in other Canadian Provinces and the United States. We export our autistic people. ASNB is not giving up on this area. ASNB has in the past exposed the fact that an autistic youth was sent to reside on the grounds of a youth correctional facility, pending export to a facility in the US, not for having committed an offence but because there was no other place for him to live in New Brunswick.

These are the past successes and present and future challenges facing the Autism Society New Brunswick. ASNB is a democratic organization with open membership rules and no conflicts of interest involving a government from which it does not receive, or seek funding, and which seeks input from all persons interested in autism. I am proud to be associated with ASNB and I hope all New Brunswickers with an interest in autism will become involved to deal with the huge challenges that lie ahead.

1 comment:

Anonymous said...

We will keep working at ASNB until the work is done. Together we are accomplishing things for all our children and adults.
Thank you for writing such a nice one energy again to forge ahead.