Centracare
414 Bay Street,
Saint John, NB
Much of the autism discussion found on the internet does not seem directed at the very real concerns of families raising autistic children. Little of it provides practical assistance for the very real challenges facing families with an autistic child to raise and care for. The same is also true for the mainstream media. Despite all the attention generated by Autism Awareness Month in the US and the good efforts by the people at Autism Speaks, Oprah Winfrey and the View, there is very little coverage of, discussion of, or even acknowledgment of the realities of life that await autistic children, particularly those with severe intellectual, communication and behavioral deficits when they grow older, when they become youths and adults.
In New Brunswick Canada our residential care and treatment capacity is extremely limited. Information is not readily available to autism organizations about what facilities and services do exist. Requests for feedback sent to residential care home operators by the New Brunswick Autism Society went unanswered by the owners of those facilities. Government officials generally engage in the time honored tactics of delay and divide the autism community and lumber on with the same inadequate resources currently available.
In New Brunswick youths and adults who reside in residential care facilities will be cared for by staff with little or no training in autism or behavior management techniques. When frustrations and conflict arise from strained relations between untrained staff and persons with autism spectrum disorders there is no one to take the side, or offer the perspective of, the autistic youth or adult. Assault charges then follow against the autistic youth or adult who is supposedly being cared for in the residence.
In New Brunswick a year and a half ago an autistic youth was sent to reside on the grounds of the Miramichi Correctional facility. He had been convicted of no crime or offence. He was sent there because the Province of New Brunswick lacked the residential care or facilities in which he could live and receive treatment. Ultimately he was sent out of the province, out of the country, to a facility in the State of Maine.
New Brunswick has a central mental health facility in which persons with a variety of mental illnesses reside. The facility does have a psychologist on staff but the facts of life for an autistic person living in that facility are not pretty. I have visited that facility in the past with a father who told of arriving on short notice and finding his adult autistic son, barely clothed, in an isolation room with a hard wet floor. When we arrived we found exactly the same situation. There is little in the way of recreational programs or activities organized for severely autistic adults.
It might be different in other provinces and states in North America. Living in New Brunswick Canada this is the future that awaits severely autistic children as they age. As the father of an autistic son, now 11 years old, I can not ignore that future. It is the ultimate autism reality check.
Mr. Doherty,
ReplyDeleteIt is most likely not all that different in other places. Here in the Netherlands, people with severe behavior problems, especially teenagers, are often sent to juvenile prison cause there's no place for them in the mental health system. I do not know about autistic people specifically, but I assume they're among them. Untraied staff is also a problem here. It seems it's gotten better within the last few years (or maybe the media have just stopped reporting on the problem or I stopped seeing it), but that doesn't mean there's no concern.
However, I can't keep from wondering why at one point you make this point - that autistic adults lack good specialized services -, that is a very valid point, and yet at the same time you refuse to listen to any autistic adults who raise that very concern, solely on the basis that they disagree with you on the topic of cure and the "only hope" stand regarding ABA. Rather than discredit people who advocate services (if you read the senate report carefully, you would've known they did) on the basis that they do not contend that the only hope is in ABA drills and that every bit of autism should be extinguished, wouldn't it be much better if you and I and many other autistic people and family of autistics who want good services for autistic children and adults, would stand up against the poor services in your province and my country and probably in most places? I think you make qite a few good points in raising the issue of autistic adults being placed in inadequate facilities with untrained staff, but I see this concern being voiced by many autistic adults, too.
You make it sound little better than a holding pen. That poor dad! Glad that you were there to support him.
ReplyDeleteBest wishes
astrid
ReplyDeleteI do not agree with your characterization of my comments about ABA or the viewpoints of high functioning autistic persons. On ABA my point of view which is shared by province and state agencies across North America, professional associations like the Asssociation for Science in Autism Treatment, FEAT organizations to name but a few, is that TO DATE only ABA has been shown on the basis of empirical evidence to be effective at treating or educating autistic persons for their autistic conditions. It is quite possible that other treatments and educational interventions will be meet evidence based standards of effectiveness. To date though only ABA meets that standard.
Nor do I dismiss the views of high functioning autistic persons as a group. I disagree with those high functioning autistic persons who campaign against treatment and cures for autism simply because THEY do not want to be cured. Some of these people campaign publicly to fight parents seeking cures and treatments for their own children. They even malign parents of lower functioning autistic children who talk honestly about their children's conditions. I disagree that these higher functioning autsitic persons represent other lower functioning autistic persons such as my son. They do not even represent ALL high functioning persons one of whom I have worked with for several years as a member and director of the Autism Society New Brunswick and who appeared before the Canadian Senate Autism committee.
I have personally fought for services for autistic persons of all ages in my home province of New Brunswick and I continue to do so now with respect to adults autistic persons in need of residential care and treatment.
mcewen
ReplyDeleteHolding pen is one description that could be used to describe the life situation of many autistic youths and adults in New Brunswick. Custodial existence is another expression as was amply demonstrated by the housing of an autistic youth on the grounds of the Miramichi correctional facility even though he had committed no offense.