Some parents have unrealistic expectations for autism funding

Yesterday I read that Nova Scotia’s NDP government was going to double funding for pre-school children diagnosed with a moderate to severe autism spectrum disorder — from $4 million to $8 million a year.  In my opinion, that is a good investment because research has proven that the earlier you get children into an ABA or alternative program, the more likely their social interaction and verbalization will improve. (See also the report on the Stanislaus Study.)

So, what was the reaction among parents who have children with the kind of autism that would benefit from such funding? As the Globe and Mail’s Corbett Hancey reports (my italics):

“Jenn Fancy de Mena, President of the Annapolis Valley Autism Support Team in Nova Scotia thinks the funding is a step in the right direction, but worries the decision ignores older children with autism. ‘I presume they’re operating from the belief that the younger the children get therapy the better it is,’ she said. ‘Unfortunately that leaves out a whole group of kids. My son gets no money and no treatment right now.’

Ms. Lanthier of Autism Speaks acknowledges that despite new funding announcements parents of children with autism will still be going into debt to pay for treatment. She said that even funding in British Columbia, where the government provides $22,000 per autistic child per year, is not enough. ‘If you’re talking about a really multi-disciplinary, comprehensive treatment plan that includes behavior modification, speech and language therapy, occupational therapy…you could be talking $60,000-$80,000 per year.'”

 A step in the right direction? From $60,000 to $80,000 per year per child? What on earth has happened to our society when parents expect taxpayers to provide that kind of money for each and every child diagnosed with an autism spectrum disorder? Of course they will go into debt. That is a given. Because, remember, government’s can be all things to all people. They have to prioritize and take care of all children with special needs. 

For example, what about the parents who have children with juvenile diabetes, Cerebral Palsy, Muscular Dystrophy, Attention deficit Disorder and intellectual disabilities, such as Downs Syndrome? I mean, there is only so much money in any one province’s health care and social services pots, and that money needs to be shared.  In other words, it’s not all about childhood autism treatment or it shouldn’t be because there is a whole lifetime to consider!  

My son was born 45 years ago. I knew something was wrong with him in the hospital because he couldn’t suck. Then, as as soon as he could stand, the hand flapping and hand biting started.  Yet, in spite of all the subsequent problems before and after he started school,  it wasn’t until he was fourteen years old that we were able to get him admitted to an Ontario residential treatment centre where he received behavior modification over a two-year period.

Prior to that time, as with all parents, we had to pay for whatever help we could find ourselves. We both worked. We did without. We remortgaged our home many times, which was made possible simply because real estate prices continued to rise through the 70s and 80s.

So, yes, I acknowledge the importance of government funding. But, I also know, from personal experience, that scarce resources must be spent in the most effective way possible. And if that is at the pre-school level, then that is where it should go. Because, there is going to come a time — at the other end of childhood and youth — where funding of a different nature will also be required, either for supports to live at home, supervised independent living in an apartment (which is the kind of funding support my son and daughter-in-law receive at the moment) or in a specialized group home.

So, while individuals with mild autism or Aspergers can live their lives like everyone else, those with moderate to severe autism usually cannot. It’s also about the types of long-term support individuals and their families are going to need. If provincial governments started allocating $80,000 a year towards treatment for one child, say from age three to age ten, there will be nothing left when they are twenty-three and they and their families need other equally important interventions. 

Something to think about.

Endnote: I would like to point out that there are many people with mild autism that don’t feel they need any kind of health care supports, ABA or otherwise. In fact, some individuals with Asperger’s, for example, are very high functioning and extremely creative individuals. The reality is, of course, that none of us are “normal” in that none of us are “perfect.”  We all think differently. We all use different learning strategies. Some of us like using maps. Some of us like using point form lists. Some of us wear glasses, some not. So, when I refer to an autism spectrum disorder or special need, I am talking about children and adults who are like my son, unable to work in a competitive job and require constant supervision in the context of daily living, particularly with money management. Fortunately for us, our son is now quite verbal and social. But, there are also children and adults who are not only non-verbal, but have severe intellectual disabilities combined with autism-related behavioural problems. They, unfortunately, will always require 24 hour supervision — which is why I make the point that government funding needs to be shared and allocated throughout the entire life spectrum.

Genetic findings about autism factors are huge!

When I received my University of Toronto alumni newsletter this morning, I was very pleased to read a news release about the latest findings of the International Autism Genome Project, Phase 2. Although the report of the study itself can be found in a June 9th advance edition of Nature, the key points for professionals and parents from the release are:

The study substantiates the importance of genes as susceptibility factors in autism spectrum disorders. Meaning that if a child’s behaviours falls within the autism spectrum, identifying those factors could pave the way for a definitive diagnosis, which in turn should lead to treatment options.   

Some of the susceptibility genes — called “copy number variants” (CNVs) appeared to be inherited while others are considered new. The result? Dozens of new autism risk genes have been discovered, including “some that might be helpful in early diagnosis.” As Stephen Scherer (Director of the McLaughlin Centre at the University of Toronto) is quoted as saying: “We now know several of the genes involved in autism and for the first time, we are able to tie many of these genes into the same biological pathways involved in brain function….Knowing these autism genes are linked, we can begin to develop therapies to target the common pathways involved.”

Another discovery made during this phase of the project was the overlap between autism susceptibility genes and those genes that were previously thought to be implicated in intellectual disability. As such, I can’t help wonder how the developers of the next DSM-V will deal with this new information.

In 10% of the families studied (1500 in all and more than 120 scientists) they found that there were some genetic “clues” that may “assist in the early diagnosis of autism or related complications.”

So, the results of this study will, no doubt, result in a paradigm shift when “it comes to our understanding of the root causes of autism and indeed other neurodevelopmental disorders.” In fact, the Canadian researchers involved in this project say the next goal “is to set up mechanisms and processes so that all families who are interested can have access” to the same testing as the 1500 families involved in the study.

Think about that. Parents being able to take their children for DNA testing, just like any other blood test. Then, if no genetic cues or CNV’s suggesting autism or intellectual disability are found, then genetic causes can be ruled out. Meaning, that the medical profession will have no choice but to look for other possible causes, including environmental toxins and possible negative reactions to vaccines.

The crux of the matter is that, even though this study’s findings have been quietly released, its findings are huge because they are about to change the way autism spectrum disorders are currently diagnosed. Here, for example, is what Harold Doherty at Facing Autism in NB wrote on that topic in relation to these latest findings.

Wakefield decision & autism battles continue

The broader autism community (parents, educators and other professionals) and political autism activists are at war. As a result, in seems that many of them, particularly the latter, have totally forgotten about the children and adults with moderate to severe autism who need their help and guidance.

(1) The Neurodiversity Vs Disability Battle

The first battle in the war relates to autism diagnosis and what has euphemistically been called the “neurodiversity” versus disability battle. Essentially, what has been happening is that, for the politically correct reason of including stakeholders in political decision making,  people with mild or borderline autism (Aspergers) are making decisions that affect those with moderate to severe symptoms. 

For example, many high functioning autistics have given presentations to parliamentary and congressional committees, to court  justices, to politicians and to television audiences. They have also been appointed to important councils (e.g., President Obama recently appointed Ari Ne’eman to an administrative post on the U.S. Council on Disabilities) with major implications for the future of autism treatment. 

Some, like Ne’eman, are not only anti-research and anti-disability but even anti-treatment and anti-cure (unlike other groups who desperately want more research and treatment options), meaning they are being asked to judge the needs of others on the basis of their own reality.

Continue reading “Wakefield decision & autism battles continue”

“World Autism Day” & lack of consensus

April 2nd, 2010 is World Autism Awareness Day. As such, it is perhaps a good time to remember that there is currently no consensus in Canada or the United States about what autism is, its possible causes or how best to treat it. As such, I can support Harold Doherty’s of Facing Autism in New Brunswick’s hope of a national autism strategy. 

However, I do not blame any Canadian government, Conservative or Liberal, that there isn’t a national strategy because, as World Autism Day highlights, there is a great deal of anger and debate in the various autism camps. In fact, even now, under the Obama administration in the U.S, we see that the controversies are what is obstructing progress and that ever so elusive consensus.

For example, there is the Ari Ne’eman debate and the controversy surrounding his views. Why?  Because he was appointed by President Obama to the National Council on Disabilities to represent autistics.  Yet, he has said it is wrong to try and cure autism — in fact to do so is reprehensible — and that autism is simply a different way of looking at the world. 

Continue reading ““World Autism Day” & lack of consensus”

YouTube videos on “Son-Rise” autism treatment

While ABA (Applied Behavioural Analysis) works for many children with severe autism symptoms, there is also an alternative called the “Son-Rise” approach.  (See what I have written on this topic here.) In fact, as more and more parents are taught how to use this form of treatment, the more it seems we are hearing about positive outcomes — with some parents going so far as to claim, not only dramatic results, but even a cure.

As such, while I remain somewhat sceptical, I would, nevertheless, strongly recommend parents, caregivers and even behavioural therapists, check out the YouTube videos at this link before they decide which approach would be best for their children or patients.

Please note, however, that since Sandy does not endorse any particular approach or treatment protocol, the link is provided only as a resource.

“Son-Rise” alternative to ABA autism treatment

For parents with a child or youth with a moderate to severe autism spectrum disorder, there appears to be a realistic alternative to Applied Behavioural Analysis (ABA) programs such as the Intensive Behavioural Intervention (IBI) approach. (See my parent advocacy link on my header bar for those resources.)

The Marazzo family & the Son-Rise Program

It is called the “Son-Rise Program,” a program that is trademarked and presented by the Autism Treatment Centre of America in Massachusetts. Started in 1974 by parents Barry Neil Kaufman and Samahria Lyte Kaufman, I have been skeptical of its claims until I read this good news story out of St. Catharines, Ontario, Canada, about the Tom and Stacey Marazzo family and the amazing improvement of their three year old son Riley.

So, while I am not endorsing Son-Rise, since I have not personally evaluated the program (whereas I have observed IBI many times and know that it gets results more often than not),  it is obvious that for some children and their families, the Son-Rise approach does help modify a child’s social and emotional behaviours significantly. Or, as Stacey Marazzo said in the Standard article, Son-Rise “focuses on the child’s social and emotional well-being, as opposed to his behaviour.”

Mind you, as a former learning specialist and special education consultant, (as well as the mother of an adult son with autism), whether we are talking about emotional well-being or observable behaviour, the result is the same. When a child or youth can interpret, function and respond in what professionals refer to as a normal developmental range, they have improved.

Son-Rise workshop for parents Feb. 12-14th, 2010There is further good news as well. For parents and professionals who are located somewhere in Southern Ontario and would like to learn more about Son-Rise, a number of former teachers and staff have organized a new Canadian service called “Relate to Autism,” which will provide a parent training workshop from February 12-14th in Toronto. For more information on that or their services, here is the contact link.

So, if parents are still on a waiting list for ABA, or their child has finished his or her allotted time in such a program, the Son-Rise option is certainly worth trying because the cost is considerably less than ABA since it can be implemented by the parents themselves.

What others are saying about Son-Rise:

I’d love to hear from more parents or professionals who have experience with Son-Rise so that I can write about both the successful and unsuccessful stories. Why? Because no one technique works for every child and parents need to know all sides of the issue in order to make an informed decision.