AN issue dear to me is state agencies educating parents on emerging treatments for Autism. It is dear to me because my own two children’s Autism was remediated through an intervention that at the time, was new on the scene ( 7 years ago) Imagine if I would have had to wait for science to catch up to what the research was saying about Autism For my own research, I needed to go back into history to wrap my head around the direction I needed to go with my own two children to decide how to help them.
At the time they were both in a behavioral conditioning program known as ABA based on the work of BF Skinner. While my oldest made some progress with skills, he still had no idea how to socialize, make friends, or think for himself ( prompt dependent). I definitely felt as though I was doing all the work in the relationship. As his mom I would, but in the real world, relationships are a give and take!
In regards to behaviorism as ABA, we know that Dr Lovaas started his work in the early 1960’s. In 1965 there was a published article in LIFE regarding his * new treatment*
My purpose is not to discuss this article at all, but to merely continue to show the progression of research.
Backing up to see Dr Lovaas influences, In 1904 Pavlov won the Nobel prize for his work in conditioning. From the early 19th century and the early 20th Century Behaviorism gained popularity among many philosophers. Dr Lovaas based some of his work on the studies of Ivan Pavlov and BF Skinner to apply conditioning/Behaviorism to help children with Autism. Before that period work was limited for Autism/mentally handicapped children.
Dr Lovaas started his work in the 60’s. yet it was not until the 70’s that he started research, which resulted to his first research paper published in 1987. This is an estimation of about 13-16 years of research before the first study was published, and going back further before a connection was made that behaviorism could benefit mentally handicapped children.
http://www.cvapinc.org/files/1987_Lovaas_Study.pdf
Ultimately, Dr Lovaas was the pioneer who was able to help parents by giving them the choice to not have to put their children in institutions, which was typical and recommended at the time. Giving their child basic skills compared to not giving them skills is progress!! Looking back on History, I think it is safe to say that in the years from 1960 through 1987 there were many parents who could of taken advantage of behaviorism to help their children stay out of institutions, but either were not aware of this option or if they were aware, for sure heard differing viewpoints with no evidence either way. Since my brother was born in 1960, who most certainly would have been Diagnosed with Autism if we were as advanced in how we understand Autism as we are now,
By the time 1987 arrived, my brother was 26.
I take this information , along with educating parents, to heart. Take a look at this video-
It is a very hard video to watch, yet as I watched it for the 4th time, I could not help but think how we, as a society tend to repeat our mistakes. History repeats itself if we do not learn its lessons. Considering my brother is the same AGE as Molly, my thought process tends to think about the Mom. We know what she was told about her daughter. Was she given options? Was she told about any *emerging treatments?* Was she educated on all her options? We obviously can think of the pain she must have gone through
Relationship development intervention (RDI )is considered an evidence based emerging treatment from the National Autism Center report, having been in the mainstream now for just about 10 years. Like Lovaas, Gutstein based his work like those in the field, but unlike Lovaas, based his work in part with the cognitive revolution which became popular in the second half of the 20th century. As the understanding of the human mind evolves, so do philosophies. Dr Gutstein saw the cognitive advances in Therapies and knew that again, they were not being applied to Autism. I tried RDI with my younger son J, who was responding negatively to behavioral conditioning. Within weeks there was a huge difference ( using RDI and some Complimentary Bio medical treatments for food allergies and gastro issues)... and he has gone on to develop relationship awareness, perspective, and understanding how to make decisions based on others.... he no longer has those core deficits of AUtism. That is pretty amazing as he was Diagnosed Severe Infantile Autism. My older son, N, who was destined to remain in a school for children with Autism for his educational experience after graduating his ABA program, also started RDI ( after I saw J's progress)and in 3 years graduated RDI and is in mainstream school, with many friends and even a facebook J...again those social and emotional milestones so crucial to every person, no matter what their diagnosis!
Regarding research, Dr Lovaas himself took 15 years to be able to formulate his first study. By the time his first study was published, he had been working in the field for approximately 27 years. More importantly then that, is the thought that parents and children suffered as they waited for Science to catch up to what can benefit children and change a child’s life and future. If you look at Cancer research, Doctors and researchers have learned a valuable lesson in the crucial element of educating patients with clinical trials. ALso take into consideration that there are no long term studies on ASD that are favorable even after 30 years. RDI is backed by research and there are numerous research studies underway both in the US and abroad. Researching behaviors that result from mental processes which are more complex then simply documenting a conditioned behavior.
I believe a balanced procedure is crucial, and that includes educating parents so that they can make an informed choice.
The choices between Behavioral therapy or Cognitive therapy ( or using both) should be offered to parents. Kudos to those who do!!! Unfortunately, parents are finding some agencies, who iare supposed to be helping/educating them , limited in their capacity to do so. We, as parents, end up turning to other parents for help. I have been on the receiving line of many of those phone calls. I myself heard about RDI years ago from another parent. I cannot imagine what my life ( and definitely my children’s life) would be like had I not been introduced and educated. I wanted for my own children, the ability to make decisions, learn from their experiences, and have that situational awareness that is the cornerstone of relationships...and this helped me to look at these crucial elements of their future, to work towards what needed to be done now!
All Agencies should educate parents on all their legitimate options when it comes to their own family and children at their upcoming Conferences of all the options. We as parents are capable of making choices that best fit our family.
All Agencies should educate parents on all their legitimate options when it comes to their own family and children at their upcoming Conferences of all the options. We as parents are capable of making choices that best fit our family.
Kathy Darrow
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