Residential Needs of Adults with Severe Autism in New Brunswick Are Not Being Met

Autism parents, and some supporters, conducted protests in front of the Centracare pyschiatric hospital in Saint John 10 years ago advocating for better, autism spectific,  care for a man with a severe autism disorder who was placed there by the NB government of  the day. The man was relocated to a more decent accommodation outside New Brunswick but no modern residential care and treatment facilities have been built in NB. I drove to Centracare with the man's father on one occasion who told me while driving there that he had visited the facility and seen his son wearing only a "Johnny shirt" in a detention room with a cement floor and liquid on the floor.  When we arrived his son was in that same room, wearing a Johnny shirt, with liquid on the floor and no one attending to him just as his father had described seeing  him before.  No significant, systemic progress for residential care and treatment of NB adults with severe autism has been made since that time.  

Laverne Stewart and the Fredericton Daily Gleaner are running a five part series on the families raising children with severe autism disorders and the challenges they face as their children become adults.    The first two articles in the series have been published. I recommend New Brunswick residents to purchase these and the remaining three issues of the Gleaner series, either by direct purchase or by subscription to Brunswick News which provides online access to all the BN community papers.

'Parents of severely autistic kids desperate for more help' was published Tuesday, October 29, 2013 and features the autism challenges faced by autism mom Brenda Comeau and her severely autistic 9 year old son Brendan Bernier and the impact his severe autism challenges have had on Brendan and his mom.  The second article  'It's going to kill her and it's going to kill me', appears today, October 30 and features Cathy Hutchinson and her 29 year old severely autistic daughter Kristie Everett and the struggle to find a decent home with properly trained staff for Christie.

That article also features comments by Paul McDonnell and clinical psychologist and Professor Emeritus (Psychology, UNB) who has educated many parents of autistic children and provided the evidence based information foundation for the early intervention and school services advocacy that did achieve some successes for autistic children and teens before and during the school years:

"Paul McDonnell, a clinical psychologist in Fredericton and an expert on the autism spectrum, agrees that the needs of adults with autism in the province aren’t being met. McDonnell said he believes a multi-tiered approach is needed. “There have to be places for individuals to live and to work. I think we need a range of services because we have a disorder that has a significant spectrum of disabilities and issues. There are some very high-functioning individuals who need different kinds of services and support than individuals with very severe autism.” 

A residential facility would have to have staff who are highly trained in the autism spectrum, he said. “What we don’t have right now is any kind of consistent government policy regarding supports and services for persons with autism spectrum disorder and I think that it needs to recognize the diversity of needs and while that might sound challenging it’s not impossible to do.” McDonnell said warehousing adults with severe autism at psychiatric facilities and nursing homes is unacceptable. “These are not appropriate places for these people to be at all and that can lead to all kinds of other issues.” He said if a family is unable to cope with an autistic adult at home the province must provide appropriate care that allows individuals to live safely and with dignity. 

McDonnell said most special-care home workers are not properly trained in the autism spectrum. “I do think the training is really critical. Ongoing training and support is absolutely crucial.” Untrained individuals who don’t understand an autistic person’s needs can cause behaviour problems to escalate, which often results in more severe forms of inappropriate intervention including heavily medicating individuals who are sometimes tied to hospital beds, he said. “We can arrange it so that these individuals are not engaging in these behaviours. We don’t have to have that. It’s all for a lack of training.” 

The Spurwink Institute in Portland, Maine, houses some New Brunswickers with severe autism. The Daily Gleaner asked the Department of Social Development for the number of adults from the province being cared for at Spurwink and other facilities outside the province and at what cost. The department refused to provide that information. A Right to Information request was sent to the government to reveal those figures. Once again, the department refused to supply the information. 

McDonnell said he believes the money the province is spending to keep people at facilities outside the province could be better used building an autism facility here. “It costs a little bit up front to get something going but in the long run taxpayers would be saving money and the quality of life for the families and the individuals concerned would be dramatically improved. So everybody wins in the long run.” McDonnell said the government is aware that there is an issue with a lack of resources for adults with autism. He said he’s attended several meetings with government representatives where the matter has been discussed.“But nothing has happened yet … Somebody’s got to put some pressure on to get this to happen. Somebody‘s got to say this is an important issue and we have to get going on this. It’s something we need to do. There’s no question about that.”" 

The fact that the needs of adults with autism in New Brunswick are not being met has been known for many years but the will to do anything about it has simply not been present in government. At one time it appeared that then Minister of Family and Community Services Tony Huntjens was going to make a serious effort to address these needs. Minister Huntjens had taken a very personal and real interest in the early intervention autism programs at UNB-CEL and in the needs of autistic children and adults. Unfortunately he resigned from cabinet before anything was put in place for autistic adults and no successor has attempted to seriously address the needs of adults with severe autism disorders.

8 Years Later: Autism Youth & Adult Residential Care & Treatment Still Abysmal in New Brunswick

In May 2007 I commented on this site about the abysmal state of Youth and Adult Residential Care in New Brunswick. That commentary included the October 2005 article by then Toronto Star journalist Kelly Toughill who is apparently now a Director and Associate Professor in the School of Journalism at the University of Kings College in Halifax, Nova Scotia. As an Autism Society New Brunswick representative and as the parent of a son with severe autism and profound developmental delays I have reminded the NB government, under both Liberal and Conservative administrations of the need for autism trained staff to work in group homes with autistic youth and adults.  I have also reminded them that we need an intermediate level facility based in Fredericton, close to the UNB Psychology department, the UNB-CEL Autism Intervention Training program and the Stan Cassidy autism treatment team.  Such a center could provide autism trained staff AND professional oversight and treatment for the more severely autistic youth and adults while also providing training and clinical visits as needed to group homes around the province. In the past year the government has indicated that one group home has received autism training for the staff as a pilot project.  8 years after a youth was sent to reside on the grounds of the Miramichi correcitonal facility, and with Autism Awareness month in Canada drawing to an end, there is still NO facility in place for those like my son with severe autism, the youth who had been sent to the correctional facility grounds in Miramichi, for those like the man sent to Spurwink Maine or the son of the letter writer from Woodstock whose letter appears at the conclusion of this blog post.

As parents we fought hard for early evidence based autism intervention and for the quality program to provide the training to those working with young children.  We also advocated with some success for autism trained teacher aides and resource teachers and accommodation of some autistic students with placement outside the regular classroom over intense opposition from the powerful extreme inclusion "community living" forces in New Brunswick which typically have not been of assistance to severely autistic children, youth and adults.  Adult care autism facilities  have been very much more difficult to advance achieve in part because of money, in part because it is harder to motivate parents of younger children to look ahead to the adult years and in very large part because of the ideological objections of the community living movement.  There is no choice in the matter though, we must fight hard for decent, modern adult residential care in New Brunswick or send our severely autistic adults to other jurisdictions. 

In October 2005 the Toronto Star reported on the case of a New Brunswick autistic youth who was being housed by the Province of New Brunswick on the gounds of a youth correctional facility. The youth had committed no crime. The state of New Brunswick's youth and adult residential care and treatment facilities was so bad, virtually non-existent for those with more severe and challenging autism disorder, that the province felt it was the only place that could accommodate the youth while they waited for his admission to a facility in the United States. The Toronto Star article follows this comment. Unfortunately, as the letter from Stephen Robbins posted here a couple of days ago indicates things have not improved any since then. In New Brunswick we must still export our autistic youths and adults out of the country for decent residential care and treatment.

From a personal perspective this issue weighs heavily on my mind. My son Conor was 9 at the time of the first story. He is now 11 and nearing the age of the two youths in these stories. In the meantime youth and adult residential care and treatment in New Brunswick have not moved a single steop forward. The bureaucracy does what the bureaucracy always does. It delays, it denies that problems exist, it worries about the careers of its members and whether they might be embarassed but it takes no significant action on critical issues affecting some of New Brunswick's vulnerable members.

" Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospitalNo other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province. "

....

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007

Appeared on page C7

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher's aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government's lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B."

Severe Autism Disorders: Conor's Autism Progress: Teeth Brushing and Tickle Shaves!

Conor Doherty sporting a big smile after a quick 

tickle shave adventure with Dad this morning

Many famous "autistics" were not diagnosed until they were adults and have turned their diagnoses into good career opportunities: John Elder Robison, Michelle Dawson, Ari Ne'eman and Mr. Ne'eman's colleagues, the fellow corporate trustees of the Autistic "Self" Advocacy Network.  For these extremely high functioning "autistics" autism is merely a difference not a disorder and they object, some even demonize, parents who talk about autism DISORDERS and seek TREATMENTS and CURES for their autistic children.  For my son, who unlike all of the aforementioned, was diagnosed with a severe autism disorder and developmental delay the day after his second birthday autism is a disorder that severely limits his daily functioning abilities.  

For Conor progress is not measured by speaking appearances at, or provision or participation as an Autism Speaks science advisory board or Washington press corps events.  It is not measured by success as a letter carrier with Canada Post, (a challenging job of which I have professional knowledge), a career researching high functioning autism or service on corporate boards for Autism Speaks or ASAN.  Nor will he be asked to participate on the IACC in the United States or similar agencies in Canada if they are ever established by a future, post Stephen Harper, federal government.  

Conor's progress though is measured in activities that are important and bring us great joy and happiness when they can be measured.  We are not part of the confused crowd that tries to sway public opinion into thinking that we should love the autism disorder from which our son suffers, the disorder that severely limits his daily functioning abilities.  For us Conor's progress is measured by excellent dental checkups and the ability to get his face shaved to make him presentable to attend at the school he loves so much.  Following are two recent Facebook posts which speak to Conor's progress in these important areas:

Tickle Shave Progress! Conor is now a young man and his whiskers need to be trimmed regularly. As with haircuts, and to an extent more so, Conor is nervous with razors scraping his face. I have called his shave a tickle shave to try and make it less frightening and I involve Conor in scheduling a shave. Yesterday I talked with Conor about having a tickle shave before school this morning. Shortly after he woke me up at 6 am sharp (as always) I asked him if we could have tickle shave at 7 am and asked him to let me know when it was 7. Conor let me know at 7 and we got a tickle shave done more quickly, and with less discomfort for him, than we have previously. A good start to the week!

Conor's dental checkup this afternoon went very well. Conor was cool, calm and collected sitting in the dentist's chair even while Dr. Andrews did a tiny bit of cleaning. The verdict: Conor's teeth are looking great!!!! I honestly believe Conor enjoys brushing his teeth.

Autism disorders are now widely recognized to be heterogenous in nature with wide variations in intellectual ability (50% of persons with autism also have an intellectual disability, WHO, September 2013), some have epilepsy, some suffer from depression, some from self injurious behavior.  Some leave the security of home and school, in some cases resulting in tragic ends.  My son left our house, on my watch, while I was occupied on a business call. Fortunately a good Fredericton citizen took him to a nearby convenience store, called 911 to report my son's presence there and waited until I arrived frantically after calling 911.  The good citizen, on learning I was there as Conor's Dad just left without giving me a chance to thank him.  My son also suffers from intellectual disability, self injurious behaviors and meltdowns and serious epileptic seizures.  Progress for my son is not measured in corporate board memberships or book sales, it is measured in calm dental checkups and good teeth.  It is measured in being able to shave the heavy beard from his face without too much discomfort to him to ready him for school.  My son has a severe autism disorder among the many variations of this heterogenous disorder.  The very high functioning media stars diagnosed as adults have much different measures and much different autism disorders.  They can sell all the books they want, build all the careers they want but they do not speak for my son with severe autism disorder.

Parent Advocacy, Autism Services and the Lack of Decent Adult Autism Care in New Brunswick

In Canada October is our official Autism Awareness month.  

That is not as widely known as it might be for a number of reasons including the fact that we live next door to the large, influential United States where April is the official Autism Awareness month. A second reason is that we do not have a meaningful National Autism Strategy.  Here in Canada our federal government has taken a small and narrow approach to autism.  Our federal government plays no meaningful role in providing autism services across Canada and in fact plays no meaningful role in providing reliable evidence based information about autism.  For that reliable autism information parents and autism advocates have had to look to the United States for guidance. It is quite understandable in those circumstances if Canadians assume that April is also autism awareness month here in Canada. In some provinces though, particularly British Columbia and New Brunswick strong parent advocacy did lead to creation of evidence based autism services being available. 

Here in New Brunswick we live in one of Canada's smaller, less affluent provinces.  Nonetheless we were, for a while at least, a Canadian leader in provision of evidence based early autism intervention, thanks to strong parent advocacy and sound guidance about evidence based autism interventions from UNB Professor Emeritus (Psychology) and clinical psychologist Dr. Paul McDonnell. With the information base to which Paul McDonnell directed us, parents were able through determination and strong advocacy, to prompt our governments, both Conservative and Liberal,  to provide evidence based early intervention services, in both English and French at a level that was recognized by the Association for Science in Autism Treatment:

"ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

Saturday, October 23, 2010

I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.

There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.

And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.

It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.

Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.

David Celiberti, Ph.D., BCBA-D, President

Association for Science in Autism Treatment"

The most advocacy focused organisation in New Brunswick was group, of which I was a founding member, called FACE ... Family Autism Center for Education. Despite the reference to Education in the title FACE was primarily an advocacy organization that. because of its advocacy focus, did not enjoy official charitable status. We met in my law office board room on King Street in Fredericton and we lobbied persistently online, through the "regular, mainstream" media such as CBC, Rogers Television, The Daily Gleaner and the Telegraph Journal.  Eventually we were able to convince more reluctant members of the provincial Autism Society to join our advocacy efforts and we returned to the Autism Society New Brunswick. Together parents stood in front of the Legislature and other provincial government buildings holding signs and making our voices heard.  

Ultimately we received conscientious, serious responses from high political leadership in the Conservative Bernard Lord government and subsequently in the Liberal Shawn Graham government. With responsive leadership from our provincial cabinets we were able, for a considerable period of time, to leap frog over the more bureaucratically inclined senior civil servants who wanted to go slow who lacked the understanding of the need for urgency in helping our autistic children. 

As noted by ASAT's David Celiberti we were able to establish a strong early intervention autism service base here in New Brunswick.  We were also successful in having our governments begin providing strong autism training to Teachers' Aides and Resource Teachers to assist autistic children in our schools.  That fight was somewhat more difficult.  "Educators" did not really see it as the place of parents to play a significant role in determining what services are available in NB schools.  Again, we appealed to our political leadership and with solid information from local experts like Paul McDonnell and US sources like ASAT,  the Office of the US Surgeon General and state autism reports from Maine, New York and California we were successful. We also used the tools at our disposal including appeals under our provincial Education Act and Human Rights Act to help our autistic children receive autism trained aides in our schools.

Strong parent advocates in British Columbia played a significant role in providing tools for New Brunswick parents to use in exerting political pressure here. The Hewko BC Supreme Court decision and the Auton BC Supreme Court  and Auton BC Appeal Court  decisions (until the latter was reversed by the Supreme Court of Canada) provided valuable tools to assist us in our advocacy here in NB.  Ontario parents fighting for autism education services in the Deskin-Wynberg litigation were also of great assistance to our efforts here in NB. 

New Brunswick parent advocacy was very successful in establishing the early intervention and school autism services here in NB.  We intentionally started out by focusing on early intervention services and then moved on to the school years.  Unfortunately the success we enjoyed in advocating for our children in early intervention and school services has not been repeated in the adult years. We are as we have been for many, many years largely bereft of any meaningful adult autism care residential care and treatment services.  Our more severely impaired autistic adults will, if they are lucky, live in group homes staffed by people with no autism specific training and little if any professional oversight. Those, like my son, who are severely autistic AND developmentally challenged will probably have to live in hospital facilities, again, if they are lucky.  New Brunswick has for many years ignored these serious needs of autistic adults although there are some signs of an awakening in the form of a pilot project involving the training of one service providers at one group home. 

We also have to continue the battle to make our civil servant decision makers understand that some people with autism have other challenges which present themselves which can provide very serious risks to the safety of autistic adults. Many with autism and intellectual disability also suffer from seizures, some of which are life threatening.  Some on the autism spectrum, including some with higher functioning levels also suffer from serious challenges like depression, challenges which may be made very difficult to address because of their autism disorders. 

In Autism Awareness Month in Canada we still lack a meaningful National Autism Strategy.  Here in New Brunswick our successes at early intervention are still recognized as in they were by ASAT in 2010 and by a mother who recently returned to NB from Ontario to open a Bistro in her hometown of Woodstock and because New Brunswick offered better autism services for her autistic son than those that were available in Ontario:

"Opening a restaurant, however, was not the motivation to bring McQuade back to Carleton County. She has a four-year-old son with autism, and she says the treatment in New Brunswick is more accessible and better than what was available to her in Ontario."

A new bistro in the square, Telegraph Journal, September 5, 2013

Many New Brunswick parents whose children are currently receiving early autism intervention services or school autism services may be unaware that it was parent advocacy that led to the creation of these services.  We have to be vigilant to maintain and expand these services at the early and school years. And we absolutely have to work to bring to the attention of government the need for a full range of autism residential care services and for the end of policies of excluding adults with Aspergers/autism from other mental health services.

High Functioning Autism Speaks Continues Betrayal of 50% of Autism Spectrum With Intellectual Disability

Autism Speaks continues its betrayal of the 50% of persons on the autism spectrum, those with intellectual disability, those for whom  autism is a disorder not a superior way of thinking or the possible subject of a new TV comedy series or a career as a well paid "autism" advocate with "Autism" Speaks. 

In the October 11 2013 blog "An Emphasis on Strength: Finding Fulfilling Employment" Sarah Andrews, Autism Speaks Coordinator of Adult Services, and mother of two sons with autism, talks about the interests of her two sons "on the spectrum".  Ms. Andrews offers the current feel good drivel that is circulated widely now and which simply pushes aside, as the DSM5 does, those with severe autism disorders, specifically those with serious intellectual disabilities ... global developmental delay:

"Focus on your child's strengths and interests and hopefully he 

or she will find a career that is fulfilling and rewarding." 

This may come as a shock to Ms Andrews and the rest of the Very High Functioning Autism Speaks organization but most children receive an autism disorder diagnosis because of their deficits, not because of their strengths or interests.   Many families are literally trying to live each day with their severely autistic, intellectually disabled child, usually a son, to the best of the PARENTS ability. Some lose the battle when an autistic child goes missing and is found in the worst of circumstances.  Some deal with noise levels, and chaotic conditions, that can result in threats of eviction from apartments and condominiums as is now occurring in Ottawa. Some see self injurious behavior in their child on a regular basis. Some struggle to communicate with their child.  

The corporate officers at High Functioning Autism Speaks are reportedly well paid.  They should offer more than feel good platitudes and meaningless tripe as advice to parents dealing with their child’s harsh realities.  The corporate officers at High Functioning Autism Speaks should at least PRETEND they care about the 50% of the autism spectrum with intellectual disabilities. At the very least they should not engage in the misrepresentation of autism challenges to the world at large. 

Excellent! Chalmers ICU Team Reaches Its Funding Goal to Purchase New Patient Monitoring Equipment!

The Chalmers Foundation has officially announced that it has met its funding goal and will soon be purchasing the patient monitoring system that is instrumental in helping the Chalmers Hospital Intensive Care Unit save many lives ... including my son Conor's for which his Mom and Dad will always be grateful:

"The Chalmers Foundation shared a link. September 25

The Foundation along with the DECH Auxiliary Inc. have officially reached our $600,000 goal to support the purchase of a new monitoring system for the ICU here at the DECH!! A HUGE THANK YOU to all donors, supporters, staff and volunteers for making this a reality! We certainly would not have been able to make this possible without your help!"

Conor at the ICU surrounded by the old monitoring equipment

Conor sharing some "happy" with his Mom, months after the ICU saved his life

Autism Speaks Enters Into "PURE" Autism Research PACT; Excludes Autism With Intellectual Disability

Autism Speaks has entered into a Research PACT to continue its focus on "pure autism"  (referred to in the PACT as core symptom autism),   while ignoring 50% of the autism spectrum, those with intellectual disability (WHO, September 2013):

"Working together, the PACT team is developing a platform of preclinical tests to evaluate and compare new medications for the core symptoms of autism."

Vivanti and his colleagues offered the term "pure autism" to refer to the tendency of autism studies to intentionally exclude subjects with autism AND intellectual disability:

"the question of the nature of the association between ID and ASD has received little attention. One common view in the current conceptualization of ASD is that ID is a comorbid condition that occurs over and above ASD symptomatology in some individuals with ASD (Nordin and Gillberg, 1998; Cashin et al., 2009; Matson and Worley, 2013). The term “comorbidity” is used in medicine to denote clinical entities “unrelated in etiology or causality to the principal diagnosis” (e.g., cancer diagnosed after a stroke), and therefore conceptually distinct from complications or sequelae of the principal diagnosis (Greenfield, 1989; Iezzoni, 1994, p. 52; see also Lilienfeld et al., 1994). Other authors suggest that ID and ASD are related in terms of their etiology (i.e., that which causes ID also causes ASD) but they are not themselves causally related (e.g., Waterhouse, 2013). The perspective according to which ID is a distinct additional entity to ASD is reflected in many aspects of ASD research. For example, many studies report that participants with “comorbid ID” were excluded, to allow for the study of “pure autism”; that is, autism not confounded by ID."

The need to study the existence of intellectual disabilities and autism disorders was highlighted in 2004 by La Malfa:

"There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. ... The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID."

Autism Speaks has routinely obscured the existence of "autism's vast majority" (CDC medical epidemiologist Dr. Marshalyn Yeargin-Allsopp, CMAJ, 2010) who also have intellectual disability. Apparently it is not helpful for fundraising to point out the harsh realities of of autism disorders suffered by those with intellectual disability, many of whom, like my son, also suffer from epileptic seizures. This latest research venture accentuates Autism Speaks refusal to deal with the harsh realities of the disorder. Far easier to talk about blue lights and parade "autism" representatives with no apparent daily functioning impairment like John Elder Robison in front of the world than to face the autism reality faced by many with autism and intellectual disabilities and their families.

I hope the Autism Speaks PACT helps those with "Pure Autism" who do not suffer from the aggravated challenges of intellectual disabilities and epileptic seizures. Hopefully too "PACTS" will be formed by organizations that are willing, unlike Autism Speaks, to deal with the harsher realities of the intellectually impaired end of the "autism spectrum". 

Autism Speaks Betrays Children, Adults With Severe Autism Disorders: Autism Speaks Blogger Calls Autism A Blessing

UPDATE NOTICE: Since this comment was published Autism Speaks has changed the title of the article I complained of from "Autism Diagnosis Is A Blessing In Disguise"     to   "Autism Diagnosis: An Unexpected Journey". Apparently the mother of a boy with autism who authored the blog comment in question also objected to the original title which was a creation of an Autism Speaks officer and done without her participation.  Nice to see that Autism Speaks will listen to some parents of autistic children even if they do still ignore persons with autism and intellectual disability,, their parents and family members, and the challenges they face together. (Thank you to Dasa Lessard for the UPDATE  Information)

Since my 17 year old son was diagnosed with autistic disorder and profound developmental delays (and more recently, like many who share those conditions, with epileptic seizures) little has been done to advance our knowledge of causes, to find treatments or cures for autism disorders.  In terms of our understanding of autism we have largely regressed in public understanding of autism disorders. 

There are some who talk about autism realistically but there are many who have adopted the perspective of some with very high functioning autism that autism is not a disorder after all.  It is very disheartening to see that Autism Speaks which has been dancing a long slow dance with the autism is a blessing Neurodiversity ideology has now fully consummated the relationship. You can read it for yourself on the Autism Speaks blog page under the title:  Autism Diagnosis Is A Blessing In Disguise written by a mother of a boy with high functioning autism. 

Autism Speaks has betrayed those with severe autism disorders and their families.