Autism Awareness? Start By Telling The Truth

April is Autism Awareness Month in the United States and April 2nd is World Autism Awareness Day. While some want to believe that every genius or person of exceptional ability from Mozart to Van Gogh to Einstein was autistic there is no way such speculation can possibly be substantiated.

Others focus on the accomplishments of modern day persons with autism like the amazing Dr. Temple Grandin. Such persons with autism should be celebrated and their accomplishments made known to the world. But autism awareness should not be limited to promoting the positive contributions of some persons with High Functioning Autism or Aspergers.

The world should also be informed about people like the two young autistic men facing murder charges, one for the death of his mother, and the young man in Fredericton, New Brunswick who had to be removed from his parents' residence after his mother was injured during a violent outburst at his home. As an autism advocate here in New Brunswick, as a legal counsel who has done some work with persons with Aspergers and as a Blogger I have received information of similar stories involving families with autistic children in New Brunswick. I have visited first Centracare; and subsequently the Restigouche Regional Hospital Psychiatric unit in Campbellton and seen autistic persons living in institutional care.

Thank you to Dr. Grandin ... and to Jason Oldford of Fredericton New Brunswick for being such a fine example of what some autistic persons can do. Jason is a personal friend and a long time autism and Aspergers advocate in New Brunswick who has addressed his challenges head on with public speaking activities at Toastmasters and at autism events.

Several years ago on a St. Patrick's day meeting of autism parents and government representatives Jason attended on his own initiative and addressed all of us. He spoke eloquently, from the heart, about his own experiences and offered his insights about growing up with Aspergers. He did so in a way that was respectful of parents' responsibilities and that brought tears to the eyes of many parents in attendance. Jason's comments before the Senate Comittee studying autism treatment and financing in Canada were highlighted by the Committee in its report. As an Autism Society New Brunswick director who benefited from Jason's organizational skills and in depth knowledge of a number of important subjects I am well aware of the positive contributions that can be made by many persons with autism and Aspergers.

There are many other outstanding accomplishments of persons with autism which appear every day on the internet including those of Alex Bain of PEI whose blog site Runman reports his running successes. But the harsher realities of autism should also be made known on autism awareness days wherever and whenever they are celebrated. We do no favors to the severely autistic by pretending they do not exist and by whitewashing from the public consciousness the harsher realities they face.

On World Autism Awareness Day start by obeying every parent's prime directive to their children - tell the truth.

Tell the truth about autism, the whole truth.

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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.

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