Thursday, November 21, 2019

“Thoughts on Dr. Ivar Lovaas from a Parent” Written by Harold Doherty for the ASAT


Dr. Ivar Lovaas
photo from the Association for Science in Autism Treatment
His truly ground breaking research provided the evidence basis to prove the effectiveness of Applied Behavior Analysis as an autism disorder treatment.
Neither I, nor any of the other NB parents who advocated for evidence based autism services, the early autism intervention program,  teacher aides and resource teachers trained in autism and ABA principles, reversal of the decision to close the Stan Cassidy Autism team and the as yet unrealized autism village network and center were invited to speak at the recent Atlantic Provinces "High Functioning" Autism Conference at UNB Fredericton even though some including me live within walking distance of the Conference location.  We were not always treated with such disrespect though, our childrens' voices were able to be heard directly with our help.  Recognition came from different sources including the Association for Science in Autism Treatment which asked yours truly to offer commentary on the great Dr. Ivar Lovaas who contributed so much to the lives of children with autism spectrum disorders. 

“Thoughts on Dr. Ivar Lovaas from a Parent”
Written by Harold Doherty
I never met Dr. Ivar Lovaas in person. My 14 year old son, Conor (diagnosed at age 2 with Autistic Disorder and profound Developmental Delays), was never a patient or a subject in a Lovaas study. Yet, when Dr. Lovaas passed away recently I felt that one of the most important people in my son’s life had been lost. Through his career and research he helped our family, our teachers, and autism service providers, teach my son and other children with autism. He proved to us that we could help children with autism learn to communicate, to overcome deficits, to grow, and to live more rewarding lives.
The importance of Dr. Lovaas in my son’s life stems from his research, reported in 1987 and 1993, which demonstrates that Applied Behavior Analysis (ABA) can help many children with autism overcome the cognitive, linguistic, and behavioral deficits which are often displayed in these children. Unfortunately, I cannot provide testimonial evidence that my son Conor, who is severely impaired by his disability, has recovered from autism because of ABA. This is partly because such services were not readily available in Fredericton (New Brunswick, province of Canada) where we lived at the time when Conor received his diagnosis. I did not learn about ABA until Conor was almost four years old, when the preschool development window was already closing for him. Therefore, he did not have the opportunity to receive 40 hours per week of discrete trial training between the ages of two and five. Notwithstanding the severity of my son’s condition, and his late introduction to the ABA principles that Dr. Lovaas demonstrated, he has been helped immeasurably by the effective autism intervention created through this research.
Dr. Lovaas’ work helped convince this father that ABA was the best bet on which to gamble my son’s valuable development time. That research provided me and my wife, Heather,with the confidence and the methods to help us communicate with our severely autistic son, and help him grow and develop. As parents, few gifts are greater than these. My knowledge of Lovaas and of ABA began when I attended lectures given by a clinical psychologist and University of New Brunswick (UNB) psychology professor emeritus, Paul McDonnell, PhD, who worked with children with autism and educated many parents about the Lovaas studies and about ABA principles in general.
In particular, Dr. McDonnell gave a lecture entitled, “Managing Problem Behavior in Autistic Children.” It is the only talk from the many, varied, and bewildering seminars given by various purported authorities in those early years that I can remember with any detail. It was the only presentation at which I was made aware of learning principles that would be helpful in dealing with the serious challenges a parent faces in raising a child with autism. I can still visualize a “Problem Behavior Extinction” Chart from that lecture, based on evidence, which showed how to eliminate problematic (including dangerous and self-injurious) behavior in children with autism. The effectiveness of ABA principles was not “pie-in-the-sky” nonsense. The claim of effectiveness was based on solid research, and in particular, on the research of Dr. Ivar Lovaas.
At the conclusion of that presentation by Dr. McDonnell, I immediately tried to use what I learned. That evening, in a crude application of ABA principles, I refused my son’s initial screaming for what I knew, from experience, was a favorite treat (an apple), until he started to ask for it by saying the word, “apple.” I repeated “apple” in two drawn out syllables, “Appp … pull.” Conor continued to scream. This process continued for almost 45 minutes until Conor finally said, “App.” I immediately gave him a bite of the apple. Each time he said, “App,” he got another bite. Then I insisted that he say “app-pull” to get another bite. After almost an hour and a half of this process, Conor had said “apple” several times, and without prompting.
This anecdote might not seem like much to many people, but to me it was the first time I was able to teach my son to say a word. It was the first time that I could communicate with him at all, in any meaningful way, other than by guessing what he was trying to say through his screaming. The process I just described was not easy for me to endure as a parent; to withhold what I knew my son wanted while he screamed in frustration. That experience, though, was the beginning of my ability to communicate meaningfully with my son with autism, and he with me. I was able to do it, I was able to communicate with him meaningfully, because the principles were sound and because I was convinced it would work. I was convinced it would work because of the research evidence in support of its effectiveness, especially the research by Dr. Lovaas.
Since that initial success there have been many others. Conor’s ability to communicate with us, and ours with him, has improved substantially. We used ABA principles at home and were successful at toilet training Conor well before he started school. Frustration-induced aggressive behavior toward others has been eliminated. Conor started his first year of high school, with his own curriculum and with ABA based instruction at school. Conor initially started school in a general classroom for the entire school day, but that resulted in some self-injurious hand-biting. It was resolved shortly thereafter by placement in a more quiet area for his ABA instruction, and the hand-biting disappeared. Otherwise, we have not had a single incident of aggression toward himself or others, nor problem behavior of any kind, reported to us by school officials. Conor loves attending our neighborhood schools, loves receiving his ABA based instruction, and is liked by fellow students and educational staff. I do credit Conor himself. Conor has always been naturally personable, and well liked by other children and adults, but his interaction with others has also been helped by the application of ABA principles to address his more challenging autism based behaviors.
It might surprise some to read that, here in New Brunswick, my son receives ABA based instruction in our neighborhood schools, but that has been the case for several years. The provincial government has provided ABA training to teacher assistants and resource teachers at the UNB-CEL Autism Intervention Training Program. The program is based on ABA principles and research, and has received external review by Dr. Eric Larsson of the Lovaas Institute who described it as “A remarkable and thorough program that has been developed to an exceptional level of quality in the context of limited resources. The province-wide model is one that many other provinces should adopt, as it carries with it many cost-effective features. The curriculum content requires little modification.”
The UNB-CEL program itself was based on ABA research, and includes instruction in discrete trial training. The program was first developed to train autism support workers and clinical supervisors for the preschool autism intervention treatment centers, established in New Brunswick several years ago, in response to intense parent pressure. It was adopted for use in training teacher assistants and resource teachers in our neighborhood schools, again after some determined parent advocacy. As parents supporting our children with autism, we were successful because we were focused, persistent, and well informed about autism and effective interventions. We also succeeded because we had the tools (the Lovaas studies) with which to convince political and civil service leaders that ABA was an effective evidence-based intervention that would help children with autism to learn.
Dr. Lovaas provided our family and our government with evidence that ABA is a powerful intervention for children with autism. He said that “if a child cannot learn in the way we teach, we must teach in a way the child can learn.” He also proved to us that it could be done, and showed us how to do it.
Harold Doherty is the former President of the Autism Society of New Brunswick, involved with advocacy for establishment of UNB-CEL Autism Intervention Training program, provision of ABA early intervention up to 20 hours per week provided by the Province of New Brunswick for children with autism between 2 and 5 years old. He currently advocates for autism youth and adult residential care systems in New Brunswick.
Citation for this article:
Celiberti D., & Taylor, B. (2010). A tribute to Dr. Ivar Lovaas. Science in Autism Treatment,7(4), 8-11.

Sunday, November 17, 2019

APAC Chose Not to Include NB Parents of Adults with Severe Autism and/or Intellectual Disability on APAC Speakers List and Their Adult Childrens' Residential Care and Treatment Issues were not Discussed at the Fredericton "APAC "Autism"" Conference

Adults with severe autism challenges and.or ID have been sent to the Restigouche hospital on the northern NB/Quebec border for decades far from families; out of sight and forgotten by government. The recent Ombud Report has confimed our fears that proper care is not provided in this location far from most NB families. This has been a serious issue in NB for many years and is referenced in the UN Convention on the Rights of persons with Disabilities.  Clearly in violation of the United Nations Convention on Rights of Persons with Disabilities articles 25 and  26.  Canada is a signatory to the CRPD including the protocol provisions which were signed on to in late 2018. 

These facts and issues were not discussed at the recent Atlantic Provinces ""Autism"" Conference ....because NB parents were not included on the speakers list by APAC or UNB CEL. I could have attended at no cost to the APAC group as I  literally live in walking distance of UNB Fredericton. I have been actively involved, as have many other NB parents, in advocating for adult autism residential care and treatment. But we were not worthy of being consulted and as a result our adult childrens' interests were not discussed at the alleged "autism' conference.



The UN Convention on the Rights of Persons with Disabilities, which has been ratified by Canada,  states in Health article 25(b) and (c) that parties to the CPRD have agreed to:

b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;

c) Provide these health services as close as possible to people’s own communities, including in rural areas;
(Underlining added HLD)


The Autism Society of New Brunswick submitted a request for  an Autism Village residential care and treatment network to the PNB government in 2008. 




Paul McDonnell, UNB Psychology Professor Emeritus identified adult residential care and treatment as NB's  greatest service need in a 2010 CBC Interview. 




Paul McDonnell, September, 2010

"Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.


We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervisionThat major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.  Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."  

(Bold highlighting added - HLD)

Professor McDonnell submitted a paper to government  in 2015 in conjunction with parents Cynthia Bartlett and myself which called for an autism village consisting autism trained staff facilities in communities around NB and a center to develop autism expertise and permanent residential care and treatment for those most severely affected by autism and related disorders. 

The issue of adult residential care and treatment however was not, according to people I have consulted, discussed at the Atlantic Provinces ""Autism"" Conference.  Given the Atlantic Provinces ""Autism"" Conferences decision to exclude NB parents of NB adults with severe autism and/or intellectual disability I am not surprised. 

It is almost 12 years since the Autism Society New Brunswick attempted to discuss the need for adult autism residential care and treatment with NB governments. We fought for NB's early autism program, UNBCEL autism trained education aides and reversal of the decision to close the Stan Cassidy autism team.  Yet almost 20 years later and many years of attempts of advocating for governments to address the needs of adults with autism for residential care and treatment NB governments still ignore those needs. 

APAC could have provided a forum for these important adult autism issues in NB and Atlantic Canada to be addressed. 

They chose not to consult us parents or invite us to speak on these important adult autism issues and I for one am not at all impressed.

Harold Doherty
Conor's Dad
Queen Elizabeth II Diamond Jubilee Medal Recipient - Autism Advocacy