This topic contains 1,814 replies, has 143 voices, and was last updated by  Laurie Guerra 5 hours, 59 minutes ago.

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  • #75

    FEAT BC Admin
    Keymaster

    In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

    This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

     


    —-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

    -Hi everyone!

    These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

    Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

    Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

    Sabrina

     


    How To Fight for Funding for Autism Treatment and Appropriate School Placement

    1. Establish a Paper Trail

    Always take notes, documenting major points of all conversations with government and school officials.

    This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

    Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

    Why?

    It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

    In other words, they canit use discretion unfairly under the cloak of secrecy.

    2. Submit all Requests in Writing

    All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

    3. Set Deadlines for Action

    All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

    Why Set Deadlines?

    When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

    How to icci?

    A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

    Who to icci to?

    Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

    Why send a icci copy?

    The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

    What is the sequence of letters?

    Find out the chain of command of the particular bureaucracy you are battling.

    TOP

    Minister
    Deputy Minister
    Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
    and Social Worker
    Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

    BOTTOM

    Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

    Documentation from Experts:

    In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

    When to hire a lawyer?

    If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

    If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

    How to hire a lawyer?

    The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Viewing 10 replies - 11 through 20 (of 1,814 total)
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  • #22989

    Andrew Kavchak
    Participant

    Hi Folks,

    Sometimes I wish that those charged with responsibilities and vested with some power that could actually help our community would focus on doing their jobs and helping people.  Unfortunately, one frequent problem for politicians is the lack of time and the unlimited numbers of demands placed on them. As a result, they have to prioritize, and often I get the feeling that the autism file gets stuck at the bottom of the pile.

    Well, today’s news suggests that the federal Minister for Persons with Disabilities, Mr. Kent Hehr, may be somewhat distracted for the next little while as he too has now been accused of misconduct allegations towards women.  I’m not exactly clear what the allegations are as the news stories read like headlines.   Trudeau’s previous track record with members of his caucus in similar hot water is a zero tolerance policy (e.g., the Massimo Pacetti story), so Mr. Hehr’s seat at the Cabinet table may be on thin ice right now.  However, this is the same Minister who previously made headlines for telling thalidomide survivors that they don’t have it so bad and that “everyone has a sob story”, so he seems to have placed himself on thin ice with a few people already.  If there is going to be some musical chairs at the Cabinet table when the PM gets back from his trip to Davos, hopefully the new Minister will be a helpful one.  Unfortunately, after two years in office, I still can’t identify a single one of the government MPs that strikes me as a champion for our cause.    

    #22984

    Andrew Kavchak
    Participant

    Hi Folks,

    I remember in the early 90s seeing one of those newspaper editorial cartoons that really made me laugh. It was a picture of a news stand with the headlines of numerous papers on display.  The headlines were all about the big global things that were happening at the time, like: “Berlin Wall Falls Down!”, “Soviet Empire Disintegrates!”, “Apartheid on its last legs!”, “IRA seeking a Peace Deal!”, “Israeli-Palestinian Peace Negotiations Going Places!”, and then the last one said “Mulroney senses change!”.

    Newspaper headlines used to have a big impact.  Nowadays, I’m not so sure. But if article titles can identify a trend, how about these two:

    1. Edmonton schools cope with explosion in number of students on autism spectrum

    Edmonton schools cope with explosion in number of students on autism spectrum

    2.  Jump in emergency calls involving autism spawns new training for RCMP

    http://www.cbc.ca/news/canada/nova-scotia/lunenburg-county-training-autism-community-help-1.4496260

    Now that some school boards and police services are noticing that autism is an issue, any guesses on which sector of our country will be the next one to wake up and notice?

    While these articles relate to Canada, the Jerusalem Post is reporting in an article that the number of people on the spectrum has tripled in Israel over the past decade.

    http://www.jpost.com/Israel-News/ALUT-Number-of-children-on-autistic-spectrum-has-tripled-over-past-decade-539475

    It would appear that there are calls in Israel for autism to become a national priority and for a “national plan” to be formulated.  I wish I could tell the folks in Israel, and all other countries that are experiencing similar issues, that Canada provides a great “model”.  Unfortunately, Canada does not.  At least, not yet.  Hopefully one day….

     

     

     

    #22980

    Andrew Kavchak
    Participant

    Hi Folks,

    Every once in a while there are some public policy developments in other countries that can make you want to stop and reflect for a while. Is this something we could, or should, do here?  If it is a good idea, why did we not think of it earlier? Sometimes it really requires “thinking outside the box”.  The ideas themselves may be good or bad, and may or not be attractive to Canadians, depending on a number of factors, etc.

    The Government in the UK launched a “campaign to end loneliness” in 2011.  And more recently they established a “Ministry of Loneliness”.

    http://www.cbc.ca/news/canada/british-columbia/seniors-expert-applauds-u-k-move-to-appoint-ministry-of-loneliness-1.4494466

    Home

    Now, I know what some of you may be thinking.  The Brits have come a long way since the “Ministry of Silly Walks” (as described and demonstrated by John Cleese himself):

    Loneliness is not a new social phenomenon that is a by-product of “smart phone” technology use.  In the 19th century Karl Marx observed that one of the consequences of the industrial revolution was a sense of “alienation” among the working population (who no longer worked with other humans but with machines, etc.)

    Kudos to the British government for recognizing that for many people (there are always exceptions – introverts may feel more comfortable being alone, etc.) loneliness sucks and that the consequences of chronic loneliness may affect mental health and productivity, mortality rates, overall well-being, etc.  Obviously, some folks in the depths of the British government bureaucracy did some “cost-benefit analysis” and figured out that an investment in a “Ministry of Loneliness” could result in a overall improvement in society and the bottom line of a government in a liberal democratic welfare state (i.e., spend some money here, and save a lot more elsewhere).

    OK, so what about autism?  Any possibility of doing some “cost-benefit analysis” on the autism file?  When the Auton case was going through the court system the plaintiffs had an accounting firm do a study on the “cost-benefit analysis” to society by comparing the costs of investing in early intervention ABA which could help the child develop and improve their overall functioning, versus a situation of no early intervention and a lifetime of institutional care. Which costs more?  The latter.  I believe this “cost-benefit analysis” relating to the provision of autism treatment was also studied and reported on in some authoritative journal by at least one other academic group in recent years (I don’t have the link handy at the moment).  Perhaps this is an area of study whose profile needs to be raised with the appropriate politicians and bureaucrats (the ones that pay attention and think beyond the next election, I mean).

    So…if “cost-benefit analysis” can lead to the creation of the “Ministry of Get Out of the House and Join a Club or Two that Meet Frequently”, why can’t we have a “Ministry of Autism Diagnosis, Intervention, Education, Work, and Living Supports when your Parents are Dead” or something like that?  Or is that too far outside the box for those who run the country?

     

     

     

    it never occurred to me that the government should spend scarce resources and taxpayer dollars on helL

     

    #22976

    Andrew Kavchak
    Participant

    Hi Folks,

    The drum beat in Halifax continued today with an interesting piece in the paper.

    http://thechronicleherald.ca/opinion/1537183-plea-to-the-pm-get-serious-about-national-autism-crisis

    <h1>PLEA TO THE PM: Get serious about national autism crisis</h1>
    JAN KEDDY
    January 16, 2018 – 3:18pm

    Dear Prime Minister Justin Trudeau,

    I am writing to you as one dedicated teacher to another.

    I know from personal experience the power of teachers to mentor, to change and to influence our future generations. I have seen your passion in action while giving our younger, neurotypical generation of students a voice. I would like to explain my passion to help Nova Scotia’s autistic adults, as well as children and youth with autism and their families.

    Over my career spanning 30 years, I have had the privilege of working in three different provinces in the field of education. Please try to imagine the influences on my teaching career: first working with children and youth at risk; then working with children and youth with special needs promoting inclusion; finally for 14 years working as an autism specialist for the largest school board in Nova Scotia as we transitioned a generation of children with autism into the public school system.

    Now, in retirement, I am trying to give a generation of children, youth and adults with autism/autism spectrum disorder and their families that same voice.

    After completing needs assessments with over 600 families of children with ASD in the Halifax regional school board, I realized that there were gaps in the current service-delivery model across Nova Scotia. Working with AutismNS, we learned that there were also gaps in other provinces.

    Please ask yourself, Mr. Trudeau, “Why would a retired teacher and autism specialist spend her own retirement savings to begin programming for individuals with autism/ASD and others who need additional support to be successful?”

    The answer becomes clear if you conduct a scan of community-based programs that support meaningful community inclusion. To say they are very limited would be an understatement.

    With the numbers of children and adults being diagnosed with autism spectrum disorder increasing and chronic funding cutbacks, the public services for children, youth and adults with ASD in the provinces are basically non-existent — resulting in a community in crisis.

    My disappointment with our current model of public service delivery in Nova Scotia deepened when the only children’s hospital in the Maritimes, the IWK, was not able to provide support to a nine-year-old boy with severe autism while this young boy was an in-patient for six weeks.

    The family hired my team to provide developmentally appropriate programming for their son, first in the hospital and now at home. They are paying for this service out of their own pockets.

    When the boy’s mother, Carly Sutherland, stood and spoke at the “town hall” meeting you held last week in Lower Sackville — and once again exposed her soul and asked for help for her son, Callum, stating that this is a human rights issue — you gave her your political answer: “We are investing in research.”

    I would like you to look at this issue as a teacher because that answer is not good enough for our families in crisis. We need to move beyond research immediately, moving to a lifespan approach if we do not want to fail another generation. From my perspective, working with our unique population of individuals, we have to move from research to a co-ordinated National Autism Strategy.

    Our team has started to implement change at the community level; we are turning research into practice, using evidence-based practices, a collaborative, community partnership model and working with families as partners. We would like to suggest and show the way to “transformational change” and how to start to implement a true “continuum of supports and services” suggested in all the research literature.

    If you would like to hear how with partnerships, innovation and research we could have a positive impact, please contact us at playingandlearningtogether01@gmail.com

    Jan Keddy of Dartmouth, a retired teacher and autism specialist, is CEO of Playing and Learning Together.

    #22972

    Andrew Kavchak
    Participant

    Hi Folks,

    This is going to sound like “deja vu” for those of you who have read many of my posts in the past, so if you see some repetition and don’t have time or are not interested, please ignore this.  But if you find the latest samples of hypocrisy from some politicians to be occasionally of interest for their sheer brazenness (defined as “bold and without shame”), then consider this latest one…

    At the beginning of this month Senator Jim Munson tweeted “I have only one wish for 2018. The full engagement of the federal government in the autism community.  Let’s make this a breakthrough year!”

    And on January 3, Mike Lake retweeted it and added: “100% with you on this, Jim. Thanks for all of your great work!”

    On the 10th anniversary of the Senate’s 2007 report “Pay Now or Pay Later: Autism Families in Crisis”, Senator Munson and his Senate colleagues organized an “autism awareness” campaign throughout October (2017) in the Senate with at least one speech and call for government action on each sitting day throughout the whole month, as well as a live streamed autism “roundtable” at the end of the month. Yet, I did not see Mike Lake at the roundtable or see him make one reference to the Senate autism initiative in any of his speeches in the House of Commons (Hansard). If he did make some reference to the Senate campaign in the House last October, I’m sorry but I missed it.  In fact, I don’t think I saw a reference to the Senate report or its campaign in any of his social media “tweets” that month either. So much for adding his voice to the those currently calling for federal engagement on the autism file and the creation of a National Autism Strategy.

    In some respects Mike Lake is consistent. Back in February 2007 there was a Bill C-304 that was voted on at second reading in the House of Commons.  Mike Lake was on the government side, and the Bill was tabled by a Liberal. It called for the creation of a National Autism Strategy and a legislative enactment that would see autism treatment covered by Medicare.  If the Bill had passed second reading, it would have gone to “committee stage” for a committee’s clause by clause review, which would have resulted in a report to the House (with possible recommendations for amendments to be considered at a third reading vote – before going to the Senate, etc.). Thus, the vote at second reading is not a vote to make a Bill become a law the next day.  Mike Lake voted against the Bill and contributed to its being defeated and no longer subject to any review, discussion, amendment, debate, etc. He also issued a “Media Statement” at the time to denounce the Bill and the politics of its sponsor (accusing him of exploiting a “wedge issue” for political gain, etc.).  In his Statement, he denounced the proposed legislative portion to include autism treatment in Medicare, suggesting that the issue of what to cover under our public health insurance system is entirely provincial, and he did not say a word about the part of the Bill calling for a National Autism Strategy. In fact, he stated: “If voters feel as strongly as I do about this, they must let their provincial governments know and then hold them accountable at election time.”  There you have it.  It’s entirely a provincial matter, and who are we supposed to vote for at election time? The “Autism Party”?

    Mike Lake’s tweet seems to imply that he thinks his behaviour (both historic and recent) can be characterized as 100% support for “full engagement of the federal government”.  It seems to me that he exaggerates somewhat.

    Oh, I know, I know…he supported the CAP project….but how could that possibly be characterized as “full engagement of the federal government” when the project proposed marginalizing the whole autism file by assigning it to a new bureaucracy with absolutely no power or resources to do anything apart from engage in consultations, “issue identification”, etc. ?

    Ironically, I cannot find Mike Lake’s 2007 Media Statement on his website anymore….and the links to the 2007 newsletters on his website generate “Error 404” messages.  This is not surprising.  Another Conservative (I think it was Randy Kamp) once posted a press release on his website (when he was in opposition) which called for the creation of a National Autism Strategy. However, after an election when he suddenly found himself at the Cabinet table (I think he was the Minister of Slippery Fishes or something) the press release disappeared (I have a hard copy somewhere).  Similarly, when Pierre Poilievre was in opposition, he had an article published in The Hill Times calling for legislation to ensure autism treatment was available under Medicare. However, once he was on the government side, he too voted against the Bill that would have accomplished precisely that.  Fortunately, you can find the FEATBC annotation of the Mike Lake Media Statement at:

    http://featbc.org/downloads/FEATBC_release_02_26_07.pdf

    #22968

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, the mom in Nova Scotia is getting more traction with the media…and politicians!  Check out this story (and the video, where at the one minute mark the provincial Premier makes some interesting statements about two of his Ministers).

    http://www.cbc.ca/news/business/banks-mortgage-rates-1.4484616

    As the article says and quotes:

    “On Thursday, Nova Scotia Premier Stephen McNeil added his thoughts. “The Minister of Community Services will be taking this issue to the National Social Deputy tables, around looking at a national strategy. The Minister of Health at the same time will also be doing the same thing,” McNeil said. ”

    So it appears that the Nova Scotia Premier is using the term “National [Autism] Strategy” and may have specifically asked two of his Ministers to “look into” this with their cohorts across the country.  Unfortunately, my search for some information about what is a “National Social Deputy tables” has not yielded any results.  Perhaps the Premier was confused and used the wrong term?

    Wherever the Minister of Community Services takes the issue, I hope it is some place that will generate some meaningful results and action.  In the  meantime, I congratulate Carly Sutherland for keeping the issue going in the media and with politicians!

    #22966

    Andrew Kavchak
    Participant

    Hi Folks,

    Bravo to the brave mother who managed to get into the Trudeau “town hall” meeting in Halifax and ask him to get the federal government to do something since the provinces are not doing what needs to be done.  CTV carried an interview with the lady before the event and then a report about what happened when she asked the PM about autism policies.

    https://www.ctvnews.ca/politics/mom-who-quit-job-to-care-for-son-with-autism-questions-trudeau-about-national-crisis-1.3752767

    Obviously, this kind of lobbying is tremendously helpful for our cause and I think we all appreciate what the mother has done to raise the profile of our common challenge. I hope more mothers and fathers will show up at other town halls and keep the drum beat going.

    However, while I believe we all understand what the lady is going through (I know I sure do), what frustrates me is the inconsistent message from our community to the media and the politicians.  In the interview the lady was asked what does she expect the federal government to do since healthcare is a provincial jurisdiction matter.  While she did mention the Senate report of 2007 and the call for action, she did not describe what that key recommendations or issues were (the key recommendation was for the negotiation of a funding formula to pay for “autism therapy”).

    Instead, she went on to refer to the government’s rejection of the “Canadian Autism Partnership” (CAP) proposal as an example of government inaction and suggested that rejection of the CAP proposal is the closest we’ve come to a “National Autism Strategy” (NAS).  Huh? I just did a search of the term “National Autism Strategy” in the executive summary report of the CAP proposal and the term does not come up once in the report.  The Senate report recommended the development of a NAS, but I did not see any such recommendation in the CAP executive summary report. CAP merely proposed the government spend millions to set up a bureaucracy that would engage in consultations, issue-identification, etc.

    This kind of confusion is not surprising given that no autism authority or group has proposed a definition of a National Autism Strategy or draft model that has (at least, none that I am aware of) received widespread community endorsement and support.  Thus, even though many of us use the term, it is not necessarily clear that we are thinking about the same thing.  Now that we have some politicians finally using the term (usually those in opposition, although I cannot recall ever hearing Mike Lake use the term), it may be time for the community to move beyond using the term in the abstract and now try to get a little more concrete about what such a strategy should consist of.

    The other reason of course for the confusion is that the CAP proposal and its supporters have done a remarkable job of portraying the proposal as the answer to all our problems. The CAP report actually states: “The development and implementation of CAP represents a comprehensive solution that will address systemic issues and complex needs of individuals on the Autism Spectrum” (p. 1). How can the creation of a bureaucracy constitute a “comprehensive solution” to anything apart from the possible previous unemployment problem of the newly-hired bureaucrats?  During the debates last year in the House of Commons the former Conservative Party leadership candidate Erin O’Toole even referred to the CAP proposal as a national “program”.  Program for what?  Where?

    I liked the part where the lady in the interview indicated that research does not help people on the ground.  However, she went on to say that we need to identify “best practices”.  That is the typical message from the CAP project and its supporters.   The issue of which marketed “autism therapies” work, and which don’t, has already been studied many times.  We don’t need more study of best practices (especially since it appears to many of us that across Canada none of the practices regarding the delivery of treatment, or supports in school, or adult housing, etc. can be characterized as “best”). We need to implement best practices, not study it.

    The article appears to suggest that the PM Trudeau responded to her the same way he and other Liberals responded in the House last year….we’re funding research and support advocacy, bla, bla, etc.

    How about asking the PM why does the federal government negotiate and fund health accords that continue the Medicare discrimination against autism treatment? Why not use the negotiations to develop national standards for the inclusion of autism treatment under Medicare?  Why not ask the PM about his government adopting his party’s policy resolution on funding autism treatment in Medicare? Why not include in the “Mandate Letter” to the Minister of Health the development of a National Autism Strategy that would see autism treatment made available under Medicare from coast to coast? etc.

     

     

    #22964

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, it is that time of the year again.  In the annual political cycle of the Ottawa “fiscal year”, the end (March 31) is coming up.  Usually, at this time of the year, the officials at the Department of Finance are putting some finishing touches on what will be a budget for 2018-19 which will (usually) be tabled in the second half of February.  More than any other government document (e.g., election platforms, speeches from the throne, etc.), the budget is the most authoritative reflection of where the government stands on public policy items.

    So, if the Minister of Finance is consulting with his Cabinet colleagues and asking them “who needs what?” and “where can we help?”, I hope that someone around the table will give him a copy of this:

    http://www.cbc.ca/news/canada/nova-scotia/autism-boy-family-resources-carly-sutherland-1.4478816

    If the Minister thinks that such sad stories only occur from time to time on the East Coast, then I hope someone will give the Minister a copy of this:

    http://www.cbc.ca/news/canada/british-columbia/angie-robert-robinson-inclusion-inquest-1.3289375

    It is absolutely unbelievable that in a wealthy and democratic county like Canada parents of such disabled children would have to either reveal their most painful and private personal challenges in the media to try to get Government attention and help, and that in some cases the attention only comes after it is too late.

     

    #22958

    Andrew Kavchak
    Participant

    Hi Folks,

    What’s the most recent figure on prevalence rates for Autism Spectrum Disorders?

    Another study just published in the U.S. appears to suggest that it is now 1 in 41.  1 in 41!!!  Are the Ministers of Health listening?

    I wonder if the CDC (which seems to have been the historic source for authoritative rates) will confirm this.  The article seems to be a little confused. While reporting what seems to be a huge increase in the rate since the last generally-accepted figure of 1 in 68, the article appears to suggest that things have “stabilized”.  What?  The trend is clear…the prevalence rates have been going steadily upward over the past decade.  I’m not sure how one can suggest that the trend has suddenly stopped when this figure of 1 in 48 is certainly new and suggests a continuation of an alarming trend.

    It will be most interesting to see what the Canadian “Public Health Agency of Canada” will report this year as they are apparently in the process of preparing a Canadian “first”…the first ever all-Canadian report on ASD prevalence rates.  One can guess what the report may contain. I suspect there will be a lot of explanation about the difficulty of gathering reliable statistics across the country, and even though the Dominion Bureau of Statistics (now called “StatsCan” or something) was created in 1918 (a full century ago) and can tell you on an annual basis how many cherries were produced across Canada every summer, the counting of people with ASD is not easy and the stats for ASD prevalence rates across Canada have to have the “margin or error” or a public opinion survey, etc. followed by some discussion of why the U.S. figures are unreliable or not applicable to Canada because….we’re different or something.  I actually have not been this eager to read an expected government report in a long time.  Hopefully, it will be a useful report that will help to improve public policy.

    Below are the first paragraphs from the article contained at this link:

    https://www.cbsnews.com/news/u-s-autism-rates-appear-to-be-stabilizing/

    <h1 class=”title”>U.S. autism rates appear to be stabilizing, new study suggests</h1>
    Autism rates are much higher than originally thought but may have stabilized in recent years, a new study suggests.

    An estimated 2.41 percent of children in the United States have autism spectrum disorder, according to a new analysis of data from the U.S. National Institutes of Health (NIH). The most recent previous estimate put autism rates at 1.47 percent in 2010, researchers from the new study said.

    “The prevalence of autism spectrum disorder is much higher than previously thought,” said senior author Dr. Wei Bao, an epidemiologist with the University of Iowa College of Public Health.

    Autism spectrum disorders now affects about 1 of every 41 children, a huge increase in autism from previous decades, Bao said.

     

    #22955

    Andrew Kavchak
    Participant

    Hi Folks,

    I came across this article by a parent of a child with autism who expresses some frustration about the frequency with which strangers ask him “Does your son have a special talent?” as soon as they find out his unusual behavior is a result of autism.

    https://www.theguardian.com/lifeandstyle/2017/dec/30/seen-rain-man-that-doesnt-mean-you-know-my-autistic-son

    I have had this experience much too often, as I suspect many of you have as well, and I often reflect on how to react.  When I protested on the Hill years ago I remember one specific individual came up to me and said something along the lines of “You’re so lucky! What’s his special talent?”   While I often found myself explaining to strangers that the movie “Rain Man” did not depict typical or average autism cases, over time this exercise can become tiresome.

    Recently, I was walking down the street with my son and he started acting up.  I saw an older gentleman on his lawn and he said something to me. I stopped and asked him to repeat it because I did not hear it.  He seemed like a nice fellow and asked me about my son.  I did not particularly feel like talking to a stranger about my son and his health issues, so we exchanged some pleasantries, and then the guy asked me “So what’s his special talent?”.  I politely suggested to him that the question is one posed by many people who watch too much Hollywood stuff, but he insisted and added “You just have not found it yet”.  Gee, thanks.

    The next day I was at a grocery store with my son and sure enough, the cashier asked me the same question.

    Ok,….so what am I getting at?  It seems to me that in many ways the years of “autism awareness” activities by so many charities and “autism societies”, etc. have largely been ineffectual.  While high functioning individuals with “special talents” may find themselves being recognized in some fashion more frequently, as a parent of a low functioning child with autism, I have often been disappointed by  the “awareness” campaigns and events that struck me as doing a poor job of raising any awareness of the challenges faced by low functioning people with autism and their families.

    My favourite examples occur every year in Ottawa with these “Autism on the Hill” rallies.  Besides getting a few politicians to give the usual political speeches with some “feel good” expressions of support, the events always seem to involve some high functioning people giving these flawless speeches. Two years ago there were two teens who spoke and were absolutely perfect in their speaking skills and delivery of their prepared speeches.  Communication impairment?  Where?

    Last year they had two memorable speakers.  One was bilingual and the other was finishing a masters degree at university in disability studies.  Needless to say, getting off the waiting list for a government ABA program or fundraising to pay for a private program was not referred to in their speeches.

    If there was anyone in the audience who had no idea what autism was and was interested in learning about it, these rallies to promote “autism awareness” would have given them the impression that people with autism are … fine.

    And then there’s Mike Lake.

    Although his own son is non-verbal, he concluded his speech by saying that people should listen to the “self-advocates” because … I’m trying to remember exactly his words now…it was something like “they are the most authoritative” or “most important spokespersons” or something like that.  Really Mike?  Those who can speak so well that they can advocate for themselves (thank you very much) are the best spokespersons for your son and others like him?  Really?  Respectfully, I disagree.  While those “self-advocates” could potentially be great reps and potentially advance “autism awareness” a lot, my observation is that they don’t do much to raise awareness of the conditions regarding those who cannot advocate for themselves. So who does?  We, parents.  And despite all these years of the Autism Societies promoting “autism awareness”, I suspect that being asked “So what special talent does your son have?” will be a question that I will likely have to deal with for many years to come.

    Anyways, I’m really glad the other parent wrote an article about the issue.

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