Happy Independence Day to My American Friends From a Canadian Autism Dad

I am, like most Canadians, a cultural "spy " of all things American. Spy might be overstating it but we are very knowledgeable about you. We have no choice.  Your television programs and news broadcasts are beamed into our living rooms every day and have been for many years. That is not a complaint. That is a fact. Most Canadians enjoy American TV and movies and what ever the internet brings today. This Canadian is very happy that we live beside such a fine neighbor with whom we share so many common values. On your Independence Day I  wish you "the very best".

As a father of an Autistic boy I am particularly appreciative of the efforts made by Americans in advancing our understanding of autism disorders and seeking treatments and cures. Two names in particular stand out for this Autism father:  the late Bernard Rimland and Ivar Lovaas.  

Lovaas  provided the evidential  kick start that helped make ABA available to parents seeking to help their autistic children.  His study results and methods  have been invaluable  tools used in  the progress that has been made to date in Canada .... by parent advocates ... seeking to actually help our autistic children. 

Bernard Rimland is given credit for ending the very harmful refrigerator mothers' theory of autism causation that did so much damage to autistic children and their families.  He also pointed out that autism is increasing , a simple fact which is to this day denied by so many with career or ideological interests in denying the facts in front of their faces. With autism diagnoses themselves expanding from 1 in 166 to 1 in 150 to 1 in 110 within a few short years, and long after the DSM changes in 1994, there are still  many head in the sand denialists who argue that increases in diagnoses does not mean increases in tactual cases of autism They rely on unproven assumptions to dig in their heals. Rimland knew better.

I also thank the US for the debates going on in places like the IACC, the Inter Agency Autism Coordinating Committee. While I share the frustration of many autism parents with the flimsy science used to assert the lack of any vaccine autism connection and the  IACC /pharmaceutical  conflicts the IACC has at least discussed and acknowledged that the dramatic increases in autism diagnoses can only be partially explained by the 1994 DSM changes and social ascertainment factors. That in itself is progress as small as it may seem. The IACC has expressly acknowledged that a paradigm shift in our understanding of autism is taking place from the 100% it's gotta be genetic model identified and criticized  by Teresa Binstock over a decade ago to the modern view that autism disorders probably result from the interaction of genetic and environmental factors.

Small steps? Maybe, but they are necessary steps.  Once acceptance of the environmental aspect of autism becomes more widespread real research aimed at understanding fully what causes autism disorders, and finding cures, can begin and the bizarre obsession with genetic autism research can be reduced to a more balanced level. 

Whatever paths unfold for those with autism disorders, and the families that care for them, real progress is unlikely to come from Canada dominated as it is by a small clique of autism researchers some of whom think that the very idea of curing autism is nonsense.  In the UK the Neurodiversity embrace and enjoy the beauty of autism mindset also has a firm grip  and no progress is likely on that side of the ocean. Future autism progress will likely occur in the US as it so often has.

To all our American friends this Canadian autism dad says thank you and have another very happy Independence Day.

Autism Blame From Refrigerator Moms to Stressed Out Moms and Dads

That deep well of autism knowledge, the New York Post, shouts the retro headline in tabloid size letters:  The parental stress behind autism.   Where once cold and distant mothers were blamed for causing their child's autism disorder now the blame is laid at the feet of both parents, stressed out moms and dads.  What would Bernard Rimland say? 

"Parents stressed out from hectic lives and neglected or volatile marriages are putting their kids' health at risk, too. Parental stress may be a major factor in many childhood problems, including even autism and asthma.

That's the conclusion of more than 20 separate studies, including several articles by the National Scientific Council for the Developing Child, a Harvard-based group of researchers from top universities: "The realization that stresses experienced by parents and other caregivers can affect a child's developing brain architecture and chemistry in a way that makes some children more susceptible to stress-related disorders later in life is startling news to most people."

Thank heavens they did the research and now all further autism causation research can be shut down and money saved.  It WAS those darn, evil parents of autistic children all along.  That 'll teach them for asking questions about autism and vaccine safety. 

Serves them right.

Adult Autism Residential Care After the Institutions Close

Photo by   wayne.glowacki@freepress.mb.ca

 

Where do adults severely affected by autism disorders, and others living in institutional  residential facilities  go,  when the  institutions close? It is one of the questions being asked in Manitoba right now as that province ponders what to to with an aging residential institution, the Manitoba Development Centre in Portage la Prairie, pictured above. Its current residents are growing older and  the Centre's  population  is declining. Some of the residents are severely intellectually disabled for a variety of reasons including some persons with autism disorders. Some require constant care and a team of professionals and staff. Many people are outraged or frightened at the thought of their severely disabled autistic adult children living in such a facility but what is the real world alternative for the severely affected by autism disorders and intellectual disabilities?

This important story is covered by the Winnipeg Free Press in "A kind of home 'Close it,' say the lobbyists. But then what?".  The WFP derserves full credit for reporting this story in a balanced, objective manner.  The WFP reports that:

"There are 285 complicated cases at the Manitoba Developmental Centre, the sprawling campus surrounded by trees on the north side of Portage la Prairie. It’s home to people with severe intellectual and developmental disabilities caused by everything from a traumatic birth to severe autism.

Some are high-risk offenders prone to aggression or sexual crimes like exposing themselves or voyeurism or worse. Those people, mostly men, are kept on a locked ward.

Others are deaf and blind from childhood measles and many have physical disabilities — they’re confined to wheelchairs, they suffer debilitating muscle contractions that contort their bodies, they have seizures.

Most — about two thirds — have been largely abandoned by their families and are wards of the public trustee. They get no visitors."

That grim but realistic depiction of life for some persons with severe functional limitations is a future that awaits many of our children with Autistic Disorder and severe Intellectual Disability.  But what do we do about it? Do we close the institutions? If so, as the WFP asks, then what?

In Manitoba public consultation will begin this summer into the future of the MDC.  Presumably that discussion will include consideration of a new systemic approach to providing care, real world care, not ideological, feel good puffery, for those severely disabled including those severely affected by autism disorders.

It might be helpful if those participating in that discussion consider the following articles by Dr. Bernard Rimland, the now deceased hero to many parents of autistic children who  brought an end to the  very harmful "refrigerator mothers" theory of autism development:

1) Community placements can be dangerous, mortality figures show

"Startling new statistics indicate that the death rate for mentally retarded individuals in community settings is dramatically higher than the death rates for comparatively disabled individuals in institutional care."

2. Re-Open the Institutions - Advocates Reverse Stand as "Community" Tragedy Unfolds, Bernard Rimland Ph. D.
 
"It has quickly become apparent that the cure - closing the institutions - is often  worse than the disease.  ... Millions of Americans with these life-long handicaps are at risk for poor quality care , questionable and even criminal management practices by service provides, and lacklustre monitoring by public health and welfare agencies ... A disturbing pattern of abuse, neglect and fiscal mismanagement has emerged:... Employees at small, community based facilities are often under-trained, poorly paid and inadequately screened. ... Death can come quickly to those removed from institutions. Ten patients dies after being removed from the Porterville Development Centre into group homes. "Most were middle aged and lived most of their lives in state centers.".. Many medically fragile or behaviorally disordered clients are a danger to themselves and others when placed in group homes where staff training is inadequate, supervision is lax, and local doctors are ignorant about developmental disabilities. Such individuals need other options including institutions.  Rather than closing down the institutions we should update them, replacing the very expensive medical model of wards and white coats with with residential model in which residents live in home-like settings in which they are protected from, but not isolated from the outside world."

I recommend that the good people of Manitoba take a reality based approach to developing a residential care system for the most severely disabled.  I say this from the perspective of a severely disabled autistic 14 year old son.  I say this from the perspective of someone who has visited the regional hospital facilities at which some adult persons with autism have lived. I say this from the perspective of a lawyer who has represented some youths with Aspergers who have had legal problems arising from life in the group home.

I do not want my son to live out his days after I am gone in a psychiatric hospital ward but I don't  want him thrown into a group home where his security and care requirements will not be met. I hope the people of Manitoba ... and the people and government of New Brunswick .... develop modernized residential care systems for persons with autism disorders who are intellectually and otherwise disabled.  I hope that the system includes community group home  and institution options.... modernized institutional options as suggested by Bernard Rimland Ph. D. the man who did so much to help rid the world of a  harmful non-reality based ideology the refrigerator mothers theory of autism.

Let's replace our current systems of residential care placement for adults severely affected by autism and intellectual disabilities with a reality based, evidence based system which provides options for our adult autistic population including options that protect, in a humane way their care and security needs.

When I Am Dead Will My Son Encounter Frozen Indifference?

(Photo by Max Ortiz / The Detroit News)

If you are the parent of an autistic child you worry about your child's future. If your child is severely autistic, if you already know that, after you die, he will be dependent on the care of strangers, then you will be haunted by worries about how he will be treated, how he will be cared for, ... his quality of life .... even his safety and security.

The shocking Max Ortiz photo was taken after Charlie LeDuff of the Detroit News was contacted by an "urban explorer" playing hockey on the frozen floor of an abandoned warehouse in Detroit with some friends. None of the men called the police and continued their game after seeing the body frozen in the ice. In Frozen in indifference: Life goes on around body found in vacant warehouse LeDuff describes the macabre scene that he found and reports on the plight of the homeless in Detroit. The photo and the story stoked my own fears for my autistic son's future AD ... After Dad.

Many of the homeless in North America would, at one time, have been housed in asylums and institutions:

In Reopen the institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds (1997) Bernard Rimland exposed the horrors that resulted from closing down institutions that provided residential care and treatment for autistic adults and other persons with developmental and mental impairments. Rimland cited the 1993 report by US Congressman Ron Wyden which noted that:

"the private sector residential facilities for the mentally retarded have become an $11 billion-a-year business.. Millions of Americans with these life-long handicaps are at risk for poor quality care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies."

Rimland cited a disturbing pattern of abuse, neglect, and mismanagement and some terrifying statistics:


"A disturbing pattern of abuse, neglect, and fiscal mismanagement has emerged:

*

"Employees at small community based facilities are often under-trained, poorly paid, and inadequately screened. As one New York State official put it: 'some consumers leave institutional programs where staff have received 100 hours of training, and move to homes where staff do not even know first aid.'
*

"Former employees of one facility reported that prescribed medications for residents are routinely discarded."
*

Dr. Cindy Ochs, of Livonia, Michigan, who cares for mentally retarded residents at about forty metro Detroit homes, stated, "They're hiring people off the street for five or six dollars an hour to care for patients who have complicated seizure disorders, feeding tubes, all kinds of problems."

Under these conditions, it should surprise no one that death rates have risen to horrifying proportions. As we recently reported (ARRI 10/4, 1996), a study by David Strauss and Theodore Kastner, based on 18,000 adults who were "clients" of the Department of Developmental Services in California from 1980 to 1992, found the death rate to be 72% higher in group homes than in asylums. A more recent study of nearly 1,900 California patients transferred to group homes from asylums in 1993-1994 showed an 82% higher death rate in group homes. In both studies, the "institution" and "community" patients had been carefully matched on all known risk factors.

Death can come quickly to those removed from institutions. Ten patients died after being discharged from the Porterville Developmental Center into group homes. "Most were middle-age and had lived much of their lives in state centers," the San Francisco Chronicle reported on February 25, 1997. "Their average life span after leaving Porterville: just 62 days."

As Strauss points out, "deaths are but the tip of the iceberg. Where there's an excessive number of deaths, there's an excess of other types of medical problems. for every death, there are many emergency hospitalizations." And, obviously, for every emergency hospitalization, there are a multitude of untold and unrecorded tales of hunger, neglect, and abuse of every imaginable kind. The situation is so clearly monstrous that even the most vocal advocates of the "close the institutions" school of thought (actually non-thought) have been forced to change their tune.

Here in New Brunswick we have made great strides in provision of services for people with autism disorders during the pre-school and school years. At the adult level though we have an antiquated, inadequate and chaotic system of residential care for autistic adults. Despite the number of persons with autism disorders and the complexity of challenges in caring for them we lump them into a general adult care system with inadequately trained staff, inappropriate locations and diets, lack of exercise and activity, and lack of security. Even stability is not guaranteed with a residential care facility closing recently with just 24 hours notice. But it is the lucky autistic adults who reside in these facilities. We have some that we have to export to other provinces, even to the US, far from family members. We have at least one autistic adults living on a general hospital ward.

We have to do something for New Brunswick adults with autism disorders. And we have to get started now.

If we do not, we have to live with the possibility that our grown autistic children will meet with frozen indifference once we are no longer around to help.

autism

Autistic Adults Lack Vital Services

When people think of adults with autism they tend to think of Dustin Hoffman's role in "Rain Man", or real people like Temple Grandin Ph. D. one of the most accomplished autistic adults in the world. Others might think of anti-ABA crusader Michelle Dawson who has appeared before the Supreme Court of Canada and the Canadian Standing Senate Committee on Social Affairs, Science and Technology as part of her ongoing campaign to prevent Canadian governments from funding Applied Behavior Analysis interventions for autistic children. Here in New Brunswick many people would think of Jason Oldford who has long been involved in efforts to help autistic children and adults in New Brunswick. Mr Oldford also appeared before the Canadian Senate Committee and offered a positive voice in support of efforts to assist autistic children with ABA intervention.

When thinking of autistic adults most people will not think of the 50 year old autistic woman who can not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island. This sad case is not an isolated event. In Reopen the institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds (1997) Bernard Rimland exposed the horrors that resulted from closing down institutions that provided residential care and treatment for autistic adults and other persons with developmental and mental impairments. Rimland cited the 1993 report by US Congressman Ron Wyden which noted that:

"the private sector residential facilities for the mentally retarded have become an $11 billion-a-year business.. Millions of Americans with these life-long handicaps are at risk for poor quality care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies."

Rimland cited a disturbing pattern of abuse, neglect, and mismanagement and some terrifying statistics:

"A disturbing pattern of abuse, neglect, and fiscal mismanagement has emerged:

• "Employees at small community based facilities are often under-trained, poorly paid, and inadequately screened. As one New York State official put it: 'some consumers leave institutional programs where staff have received 100 hours of training, and move to homes where staff do not even know first aid.'

• "Former employees of one facility reported that prescribed medications for residents are routinely discarded."

• Dr. Cindy Ochs, of Livonia, Michigan, who cares for mentally retarded residents at about forty metro Detroit homes, stated, "They're hiring people off the street for five or six dollars an hour to care for patients who have complicated seizure disorders, feeding tubes, all kinds of problems."

Under these conditions, it should surprise no one that death rates have risen to horrifying proportions. As we recently reported (ARRI 10/4, 1996), a study by David Strauss and Theodore Kastner, based on 18,000 adults who were "clients" of the Department of Developmental Services in California from 1980 to 1992, found the death rate to be 72% higher in group homes than in asylums. A more recent study of nearly 1,900 California patients transferred to group homes from asylums in 1993-1994 showed an 82% higher death rate in group homes. In both studies, the "institution" and "community" patients had been carefully matched on all known risk factors.

Death can come quickly to those removed from institutions. Ten patients died after being discharged from the Porterville Developmental Center into group homes. "Most were middle-age and had lived much of their lives in state centers," the San Francisco Chronicle reported on February 25, 1997. "Their average life span after leaving Porterville: just 62 days."

As Strauss points out, "deaths are but the tip of the iceberg. Where there's an excessive number of deaths, there's an excess of other types of medical problems. for every death, there are many emergency hospitalizations." And, obviously, for every emergency hospitalization, there are a multitude of untold and unrecorded tales of hunger, neglect, and abuse of every imaginable kind. The situation is so clearly monstrous that even the most vocal advocates of the "close the institutions" school of thought (actually non-thought) have been forced to change their tune.

In Australia both government and opposition parties have recently announced funding packages to provide early intervention for autistic children, a critically important service. Autism advocates and service providers though remain concerned that the needs of adolescent and adult autistic persons, most of whom would not have benefited from receipt of ABA intervention, remain neglected. Ken Baker, chief executive of National Disability Services, said the Government's plans were a strong foundation that the:

"challenge now is to ensure that services for people with autism, where required, are also readily available later in life," Mr Baker said.

In Canada, in the current Ontario election campaign, debate has taken place around the provision of Intensive Behavior Intervention services to school age children and the removal of waiting lists for autistic children to receive services. There has been very little mention, if any, of the needs of autistic adults; of the residential care and treatments needs of our most vulnerable autistic adults.

Here, in New Brunswick there is a lack of information available concerning actual conditions facing autistic youths and adults living in group homes. My own experience as an autism advocate and discussion with other advocates indicates that staff in New Brunswick group homes lack autism specific training. As a province, as a society, we have failed our more severely autistic youths and adults by failing to provide appropriate residential care and treatment. In New Brunswick our more severely autistic youths and adults have been sent out of province to other provinces and in some cases to the United States to receive treatment. In one instance an autistic youth who had been charged with no criminal offence was sent to reside on the grounds of a youth correctional facility because that was the only accommodation available for him while he awaited treatment at the Spurwink facility in Maine.

We have to do more for our autistic youths and adults. We have to ensure that residential accommodations suitable for autistic people are available for them, accommodations in which they can maintain ties with their families and friends in safe, hygienic settings. We also need institutional care facilities for the most severely autistic; facilities at which they can receive proper care and treatment.

It is time we stopped pretending that privately run group homes operated by poorly, or untrained, staff are a fix all solution to the very serious residential and treatment needs of autistic youths and adults. It is time we started talking about autistic adults and their needs.