Tuesday, April 29, 2008
As many of you know, I run a company that distributes fresh cut flowers to the North American markets. Here in Southern California, floral production is peaking as Mother's Day draws near. This is a potent brew in our business, and I spend far more time at the office at this time of year than I would choose to in a perfect world. In the flower biz, however, one must make hay while the sun shines, so to speak.
At the same time, J is in Kindergarten, T is in preschool, both of them are in T-ball, Colin is walking (which dramatically increases his destructive range - now knee-high) and babbling a lot, Grandma and Poppa take them on regular weekend adventures, we had Arts in the Park to attend, it has been warm enough to swim, we are trying to train our puppy Marley (who is rapidly approaching 100 pounds of hyperactive dogginess), the yard and house need lots of attention, L and I are trying to exercise a bit more, etc, etc.
I also have been following the autism/mito story as it develops in fits and starts. While fascinating from a purely academic standpoint, the real-world implications are far-reaching. At this point, I am of the strong opinion that any possible mito/autism connection (with the implication that vaccines are the link) has turned into a feeding frenzy for the anti-vax crowd, that they are being irresponsibly (and erroneously) offered chum by sensationalist David Kirby, that real mitochondrial experts are carefully weighing in with cautionary notes that are being largely ignored, and that some bloggers are doing a superior job of weaving personal experience with scientific understanding in an attempt to bring some well-needed grounding to the situation.
Another fascinating situation involving Neurodiversity.com author Kathleen Seidel has been unfolding rapidly and with great affect. Let me be the 1000th to say Kudos! to Kathleen for her oh-so-American, self-made Motion to Quash that may have propelled Clifford Shoemaker (a key player in the autism/mito scenario, to boot) to the brink of jurisprudential retribution. For shame, Mr. Shoemaker. At the same time, thanks for indirectly generating so much traffic for the Autism Hub.
I have also had my nose in a few different books/publications. One has been Elijah's Cup, a heartfelt opus written by Valerie Paradiz. Though I am only about 1/3 of the way through this book, I am completely drawn in by the story of Valerie and her son's early days entering the arena that so many of us inhabit comfortably now. I am eager to continue on with the lovely style of Valerie's writing and its powerful, positive message.
Another thing I had wanted to write at some length about is Autism: The Musical. Here's the short version of my reaction to this documentary: I LOVED IT. Not all of it, but who cares? I loved it. Please watch it.
I have also noticed that we have a couple more new bloggers here at the Autism Hub - the more the merrier!. Welcome, Bill! Your well-grounded opinions and wonderful sense of humor are very welcome around here. Welcome, Jeff Gitchel! I've been reading your blog a bit and I really like it. Your real-world guides are great!
I also have been actively at work behind the scenes, along with several other Autism Hub bloggers, on a project. Taking a page out of David Kirby's book, I'm not going to tell you what it is right now. Instead, I am going to leave you with this teaser: Leave your calenders open the week of June 25.
Friday, April 11, 2008
From an email distributed via the NIH Autism List Manager today:
IACC Strategic Planning Workgroup Meeting Announcement
There will be a meeting of the Strategic Planning Workgroup formed by the
Interagency Autism Coordinating Committee (IACC) on Monday, April 21st from
11 am to 6 pm EST. Workgroup members will review current funding for autism
spectrum disorder (ASD) research, proposed research initiatives and resources.
They will then discuss and make recommendations on prioritization of research
initiatives for the IACC strategic plan for ASD research.
The workgroup meeting will be open to the public through a conference call phone
number and a web presentation tool on the Internet. Members of the public who
participate using the conference call phone number will be able to listen to the meeting
but will not be heard. There may be an opportunity for members of the public
to submit written comments during the workgroup meeting through the web presentation
tool. Submitted comments will be reviewed after the meeting.
Individuals who plan to use these electronic services and need special assistance,
such as captioning of the conference call or other reasonable accommodations,
should submit a request at least seven days prior to the meeting to Tanya Pryor.
Interagency Autism Coordinating Committee
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 6187, MSC 9669
Rockville, MD 20892-9669
To register for the meeting, please go to the link below:
The conference call phone number is (641) 715-3222, access code 693-119-10.
If you experience any technical problems with the conference call phone number or web
presentation tool, please contact GoToMeeting at 888-259-8414.
For more information on the IACC, please see the link below:
I agree with Ari Ne'eman that the "central stakeholders" in development of
autism-related policy and research orientation are those individuals who are on
the Autism Spectrum. I have met many people who have tremendous
contributions to offer to the ongoing discussions taking place, many of which will
dictate future policies regarding autism. I would encourage anyone who has the
time and the inclination to attend, listen to, or follow this meeting online
(via the provided web presentation tool), and to contribute when possible.
Wednesday, April 9, 2008
Today's homework entailed the directive to look around, say what you see, and then draw a picture of that in the box. L was helping J with his homework and I was sitting next to J eating my dinner.
J looked around and settled his searching gaze on ... me.
And this was the result:
Allow me to walk you through the creation of this piece of art.
The first thing J did was to ask for his colored pencils. He was not at all happy that we didn't have 'grey'. 'Why do you need grey', L asked. 'For hair' was J's reply. Ouch!
He decided to do the hair "spikey".
The black circles that you are currently convinced are eyeballs? They are nostrils. The yellow circle around them is my nose.
The red edges to the ears do not indicate that I am a warrior of the Sioux nation, but that my ear rims were redder than the rest of my ears.
The black dots are a very fine 5 o'clock shadow. I did shave this morning. J's attention to detail is astounding.
The large brown patch and the green smudge in the eye area of the drawing are my eyes. He asked me to look at him and stared deeply into my eyes, after which he pronounced, "Light brown for the outside, light green for the inside, and dark brown for the spots."
The yellow column upon which is resting my head is my neck (in retrospect, that is the strangest sentence I have ever written.)
The black oval, black stripes, and red circle below the neck represents the Adidas logo on my t-shirt.
And the best part, the crowning achievement of this original opus, the element that will echo through the years .... my smile. I always want my boy to see that smile. On so many levels, this is my favorite part of the "portrait".
One last thing to end this post...
This morning J was up early. He was perched in front of the computer when I came downstairs to leave for work at 5:20 a.m. I walked over, rubbed his head, kissed him, and said "Bye, J! I'm going to work now. You have a wonderful day, I love you, and you're a great kid!" (this is something I tell all three boys every chance I get)
Without peeling his eyes away from the computer, he responded in a low, yet falsetto, voice, "You're a great dad."
I walked away, knowing that even though he didn't address me directly or in a normal-volume voice he meant it. As I was about 5 steps away, he piped up with:
"Dad. I think you never thought I was gonna say that."
Tuesday, April 8, 2008
This month, the cover story is "Microenterprises: A New Way for Consumers to do Business". This brief article discusses the microenterprise - defined as a business with five or fewer employees that can utilize initial capital of $35,000 or less. Think of things like minor repair operations, cleaning services, pet sitting or training, gift basket creation, local tech support, etc. The point of the article is that this type of business venture creates an exciting opportunity for individuals with developmental disabilities to strike out "on their own". Of course, on one's own can be defined in many different ways, as different people have highly variable needs for support.
The article goes on to detail some of the necessary areas of skill acquisition and interest determination that would allow for a successful outcome in a microenterprise.
I think the thing that struck me most about this article was the closing paragraph, as it seamlessly integrates my acquired views of both personal fulfillment/responsibility and the need to provide ample opportunities for all people to realize their potential:
"People have a universal desire to experience and express their dignity, meaning, and self-worth through creatively harnessing their skills and talents in volunteer or compensated work activities. Microenterprises and self-employment is a dynamic vehicle to make that happen."
Anyone who has spent any time looking at this issue will have a pretty good idea of some of the reasons to believe that the current upward trend in administrative prevalence does not actually mean that more autistics are being born (or "damaged" into autism) nowadays. Among them are several changes in the diagnostic criteria, the adoption of the Spectrum Disorder assignation which includes PDD and Asperger's Syndrome, changes in reporting requirements at various service providers, an increased awareness among diagnosticians and a possible improvement in diagnostic tools, and a reduction in the social and educational stigma associated with Autism. Another chief reason is diagnostic substitution.
Diagnostic substitution describes an occurence in which a person either receives a change in diagnosis or is diagnosed with, in this case, autism instead of a different diagnosis that may have been appropriate under previous diagnostic criteria. It has been demonstrated numerous times that in CDDS data, the increase in administrative prevalence for autism very closely mirrors the simultaneous decrease in administrative prevalence for Mental Retardation. It has also been closely examined that Childhood Schizophrenia is a diagnosis that has, for many children, been replaced by an autism diagnosis as the diagnostic criteria for autism changed and developed over the years.
Setting aside speculation, it is nice to see some science being done on this question. Establishing accurate and consistent real prevalence figures and trends would be tremendously beneficial in understanding many aspects of autism, including clues to causation as well as planning for the future needs of autistic people in a whole-society sense.
Today I saw the abstract for this study that has been published in Developmental Medicine and Child Neurology . An excerpt form the abstract states:
"Rates of diagnosis of autism have risen since 1980, raising the question of whether some children who previously had other diagnoses are now being diagnosed with autism. We applied contemporary diagnostic criteria for autism to adults with a history of developmental language disorder, to discover whether diagnostic substitution has taken place. ... Some children who would nowadays be diagnosed unambiguously with autistic disorder had been diagnosed with developmental language disorder in the past. This finding has implications for our understanding of the epidemiology of autism."That's pretty straightforward. This study follows another published in the Journal of Autism and Developmental Disorders (2007 Nov). From the abstract:
"We examined trends in assignment of special education codes to British Columbia (BC) school children who had an autism code in at least 1 year between 1996 and 2004, inclusive. The proportion of children with an autism code increased from 12.3/10,000 in 1996 to 43.1/10,000 in 2004; 51.9% of this increase was attributable to children switching from another special education classification to autism (16.0/10,000). Taking into account the reverse situation (children with an autism code switching to another special education category (5.9/10.000)), diagnostic substitution accounted for at least one-third of the increase in autism prevalence over the study period."So here we have two differently structured studies that both indicate that diagnostic substitution plays a role in the increase in autism administrative caseload prevalence. These two follow another, perhaps more widely known study by Shattuck, published in Pediatrics (Apr 2006). This is the study that resulted in harrassment and character assassination of Paul Shattuck by the folks over at NAA, a major "mercury causes autism" advocacy group. From this study's abstract:
"RESULTS: The average administrative prevalence of autism among children increased from 0.6 to 3.1 per 1000 from 1994 to 2003 ... During the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1000, respectively. Higher autism prevalence was significantly associated with corresponding declines in the prevalence of mental retardation and learning disabilities. The declining prevalence of mental retardation and learning disabilities from 1994 to 2003 represented a significant downward deflection in their preexisting trajectories of prevalence from 1984 to 1993. California was one of a handful of states that did not clearly follow this pattern. CONCLUSIONS: Prevalence findings from special education data do not support the claim of an autism epidemic because the administrative prevalence figures for most states are well below epidemiological estimates. The growing administrative prevalence of autism from 1994 to 2003 was associated with corresponding declines in the usage of other diagnostic categories."I think that in today's media climate, where fund raising a la Autism Speaks, spotlight seeking a la Jenny McCarthy and David Kirby, and controversy seeking a la every major news outlet are combining to paint a picture of a devastating autism epidemic, it is important to keep in mind that the path to real answer lies in the careful application of science.
And it is even more important to understand and recognize the impact of our focus on various issues on those who sometimes seem to have the quietest voice in a community full of big voices - autistics.
Sunday, April 6, 2008
This post will, therefore, be a break from suspicious subpeonas, from mercury moms, from jabbering Jennies, from suspect science, from suggested segregation. It will not discuss important autistic issues such as residency options, community acceptance, communication assistance, or health insurance coverage. It will avoid causation controversies, blathering bloggers, and annoying antagonists. You will notice the almost complete absence of parental perception, friendly factoids, and buddy bias. In fact, you will be acutely aware of the almost all-inclusive absence of any and all autism assignations, both abstract and actual. All these things will be put on hold.
And instead, I'll just tell you about a birthday party.
No, seriously. I took J and T to the most interesting birthday party today. I carefully chose the word interesting, largely because many other adjectives simply do not apply in this case.
A few weeks ago, the invitation came in the mail. Pretty standard stuff for a 4-year old boy's birthday - an imposing Transformer commanding you to attend a party. We RSVP'd, and the family lottery determined that I go to this party with J and T, while my wife spent quality 1 on 1 time with baby C. (Family lotteries are great in that, hey, nobody can lose! Either spend a lively day with 'the boys' or a quiet day with 'the baby'. Automatic win-win.)
Noon rolled around today and we left for the party. As we approached the area, I realized that we were entering interesting territory. Very expensive homes set on several acres each make up this neighborhood, which is absolutely beautiful. We found the house we were looking for and went in.
It was a lovely home. Furniture was oversized, almost Baroque but lacking its ornate pretense, with big cushions and large pedestal-like footings. The flooring was dark hardwood, the interior rooms were separated by brick walls. The peaked ceilings featured dark wood beams and casing. It was austere and yet inviting, very nicely done. How very old-world, I thought to myself. And then I met the parents of the birthday boy who were Italian. Not Italian-American, but Italian born and raised. It turns out they are restaurateurs and own a couple of really good eateries in our area. Which leads me to the most interesting part of the party - the food.
Now keep in mind, as I list the 'finger food' portion of the offerings, that this is a birthday party for a young boy turning four. Also note that I will create contrast by listing the Common birthday party fare alongside the Actual party fare offered today.
Common / Actual
Tortilla Chips and Salsa / Pita Toasts and Ceviche
Cheese and Crackers / A full wheel of Parmagianno-Reggiano with cracked pepper wafers
Potato Chips / Deep-fried potato puffs with chorizo and chile stuffing
Ice Water / Vitamin Water, chilled, over ice
Pigs in a Blanket / Tart Cherry and Ground beef in Phyllo pastries
M&M's / Cinnamon and Stewed Apple Empanadas
Hot Dogs / Hot Dogs
Get the picture? Or, keeping in the vernacular, capeesh?
While not uncommon for an adult beverage such as a can of light beer to be offered to the parents who stay through these kids' parties, it is decidedly uncommon to be able to choose between a very nice Malbec from Argentina or an ice cold Stella Artois on tap.
(Note to self: Next year, at this kid's party, bring wife to be designated driver).
So they had an inflatable bounce-house and a swingset which kept the kids entertained. Then there was a fabulous puppet show - superbly done and replete with original music, konfetti cannons, smoke effects, and great kid humor. Very impressive stuff.
The cake. This was a marvel, something one might see on Ace of Cakes. This particular opus was an eclectic mix of Spiderman, Transformers, and Cars (the Movie). It was done in two layers. The top layer was chocolate with strawberry striations. The way they served it was to pool some creamy strawberry sauce on a plate, lay the cake slice on it, then smother it with more strawberry cream. While the kids were enjoying that, they served the adults the bottom layer. This was vanilla with vanilla cream striations, covered in stewed strawberry halves. This would have been great, except I really had my heart set on a particular Spiderman decoration that ended up going to the lady served right before me. I had to settle for sucking the frosting off a Lightning McQueen figurine. Damn!
All in all, a good time was had by all. I am really looking forward to next year!
Friday, April 4, 2008
A Bully can be defined as "a blustering, quarrelsome, overbearing person who habitually badgers and intimidates smaller or weaker people."
Apparently, Clifford Shoemaker and his clients, Reverend and Mr. Sykes, failed to consider the last portion of this definition prior to issuing their subpeona to Kathleen Seidel.
You see, Kathleen does not strike me as being someone who is weaker than anyone else, or as being someone who is likely to take bullying and intimidation lying down.
Please review, therefore, her post at Neurodiversity.com in which she describes the circumstances of the issuance of the subpeona and follows that with a 17-point Motion to Quash Subpeona that has now been filed. I have no legal background, but it certainly appears to me that Kathleen has offered a vigorous and compelling set of arguments for the consideration of the United States District Court for the District of New Hampshire.
The patently obvious effort at intimidating a private citizen who has no bearing on the outcome of the Sykes vs. Bayer case provides a crystal clear example of the lengths to which anti-vaccine activists and the ruthless trial lawyers who steer them will go. Considering the fact that my blog among many others was named specifically in section 5 of the subpeona, I am proud to stand with my fellows in the online community against this baseless harassment and infringement on Kathleen Seidel's personal right to research, analyze, and publish information about ... well ... any damn thing she wants to.
Here's to hoping that Mr. Shoemaker and his gold-digging clients get a lot more than they bargained for when they settled on bullying as their stratagem of choice.
Liz at I Speak of Dreams has taken the time (thank you, Liz) to keep a running list of blogs and other internet locations who have offered reactions to this situation. Based on a recent count, I may be about the 40th person to let my feelings be known on this travesty.
Wednesday, April 2, 2008
These comments were delivered today to the Florida Autism Task Force's inaugural meeting by ASAN President Ari Ne'eman.
"Thank you for this opportunity to address the first meeting of the Florida Autism Task Force on today, the first World Autism Day. My name is Ari Ne'eman and I am here today in my capacity as the President of the Autistic Self Advocacy Network (ASAN), a volunteer non-profit organization run by and for adults and youth on the autism spectrum. ASAN works to promote the autistic culture movement and other opportunities for individuals on the autism spectrum to interact with each other as well as work to improve the representation of the autistic community in public policy deliberations about autism and disability affairs.
The autism spectrum is broad, diverse and subject to many stereotypes. Just as we work to combat generalizations about racial, religious, national or other minorities, it is only right to avoid a stereotyped view of autism. There are speaking and nonspeaking people on the autism spectrum; people currently capable of living independently and holding competitive employment and those with more significant support needs before those goals are conceivable to them. There are those of us who have held diagnoses since childhood and those of us who were identified later in life, serving to correct an inaccurate previous diagnosis that had placed us in the wrong educational or service-delivery infrastructure. To claim, as some continue to do, that we on the autism spectrum are all incapable of speaking for ourselves is an ignorant and damaging falsehood. Equally harmful is the idea that autistic people are all geniuses or savants, with Rain Man-esque abilities. As someone with an autism spectrum diagnosis myself, I hope to address some of these misconceptions, explain a bit more about our community and inform those assembled here today about the public policy priorities – and concerns – of the autistic self-advocacy movement. In doing so, I hope to communicate to you that, contrary to the unfortunate paradigm that has pervaded the media discourse about us, autism is not a tragedy. We are, as with any other minority, a community with unique needs, strengths, challenges and aspirations that are often distinct from the parent or professional voices that speak about us, without us. The true tragedy is the persistent discrimination, abuse and lack of access that continues to govern society's approach to us. On this, the first ever World Autism Day, we assert that it is this prejudice – not autism itself – that we have a true interest in combating, in the interest of ensuring for every person the rights of communication, inclusion, self-determination and respect.
I was diagnosed on the autism spectrum, specifically Asperger's Syndrome, at age 12. Growing up, I spent time in both inclusive and segregated educational placements. My own negative experiences with segregated educational environments led me to become an advocate for my own educational inclusion and later for the inclusion of other students with disabilities. These experiences motivated me to found the Autistic Self Advocacy Network, an international grassroots advocacy organization of adults and youth on the autism spectrum. ASAN's work has involved me in a number of areas of public policymaking that are important to people on the autism spectrum, some of which I will outline here.
In determining how best to develop a system that provides for the educational, service-delivery and other needs for individuals on the autism spectrum, it is imperative that self-advocates be recognized as the central stakeholder in this discussion. I'm happy to see Florida creating an Autism Task Force to identify what needs to be done in the areas of education, services, supports and research, however I am saddened that the task force did not provide for representation from people on the autism spectrum ourselves. During my time in Florida, I will be working to create a chapter of the Autistic Self Advocacy Network. I encourage the members of the Task Force to communicate with us in their deliberations. Future policymaking bodies relating to the autism spectrum and disability issues more generally must include self-advocates. We know our own needs best and no policymaking process can be legitimate without including those who it purports to serve. Nothing About Us, Without Us!
One of the key areas of unmet need for the autistic community – the community of those of us actually on the autism spectrum, as opposed to the parents and professionals who make up the frequently discussed autism community – is in the area of diagnosis. As many of you familiar with the autism field are aware, we have been seeing a steady increase in the reported incidence of the autism spectrum, with the most recent update pointing to an incidence of 1 in 150 from a previous 1 in 166. The reason for this increase in reported incidence is not an "autism epidemic" or any other causation theory that seeks to promote the false idea of autism as a contagion or a force that "steals" an otherwise normal child. This disease-oriented model is not supported by either science or our own experiences. What we are seeing is an increase in awareness of the autism spectrum, resulting in more accurate diagnosis identifying individuals who previously were placed within the mental retardation, mental illness, learning disability or other educational and service-delivery infrastructure. This is a situation that I myself experienced, having been diagnosed on the autism spectrum after having an inaccurate ADD diagnosis for years prior. It is also something that is experienced by many other adults and youth on the autism spectrum in a far more damaging fashion, as a result of the frequent institutionalization and presumption of cognitive inability that far too many autistics continue to suffer from today.
The rapid increase in autism spectrum diagnoses has accompanied repeated broadening of the diagnostic criteria for the autism spectrum, incorporating more information about the diverse manifestations of our neurological type. In addition, the past few decades have resulted in a decrease in the stigmatization of parents of autistic children, as a result of the medical community moving away from the odious and damaging inaccuracy that autism is the result of "refrigerator mothers". This, combined with increased services and supports available for the autism spectrum, has resulted in more autism spectrum diagnoses. These increasing numbers, however, fail to take into account the substantial number of individuals on the autism spectrum who, as a result of a lack of health care access and/or professionals trained in the diagnosis of adults as well as problems with inaccurate diagnostic criteria, are unable to find the resources to acquire the diagnosis that would accurately describe their characteristics and enable them to qualify for services. It is necessary that we increase the availability of accurate information relating to the autism spectrum in reference to adults and youth.
There remains a shocking lack of awareness for the needs – and even the very existence – of autistic adults. In many circles, it is assumed that autism is something relevant only to children and as a result legislation and policymaking has been focused mostly on early childhood. However, there is a large population of adults and adolescents on the spectrum with needs that are not being met. In areas like employment accommodations and other aspects of disability service-delivery, adults on the spectrum are frequently unable to access the supports that are currently available, due to a lack of knowledge of our particular needs. Many of us, as is the case for others with less obvious, "invisible" disabilities, face pervasive employment discrimination as a result of communication difficulties. Vocational Rehabilitation agencies in many states are unaware of how to address these issues, due to the fact that while many of us have the skills for competitive employment, difficulties with transportation, the interview process and the social aspects of the workplace can often interfere with holding a job. It is important not only to educate the general public about autism, but also disability service-delivery professionals who are too often unfamiliar with our population.
Many adults on the autism spectrum continue to suffer in institutions, despite the Supreme Court decision of Olmstead v. L.C., promising community living options for adults with disabilities. In my work on New Jersey's Olmstead Implementation and Planning Advisory Council and with ASAN chapters across the country, I have seen a consistent lack of knowledge of the unique needs of adults on the spectrum when planning community living options. Many of us have difficulties with certain kinds of sensory environments – a lack of awareness of these issues on the part of those planning and implementing the transition into the community can result in problems with the de-institutionalization process. These and other aspects of community living show the need for significant representation of self-advocates in the policymaking process, to ensure both the legitimacy of the process and the creation of the most effective possible public policy strategies.
Autism training for law enforcement (as well as other emergency personnel) remains a key issue. Many of us possess significant difficulties with communication, particularly in high-stress and anxiety-provoking situations. What happens when a person who cannot speak out loud when under stress is approached by a police officer and asked for personal information? What about when a person fails to understand instructions given to stop or engages in an activity that is interpreted as aggressive? There have been numerous incidents of serious injury and even death as a result of a lack of knowledge on the part of law enforcement personnel about autism and other disabilities. This must be rectified and has been the source of legislation in a variety of states across the country. High-quality training for law enforcement and other emergency personnel does exist and it should be utilized in every locale.
For many adolescents on the spectrum and our families preparing to transition out of the school is a process with little guidance or support. When I was preparing to leave high school, my school did not provide sufficient information on the college applications process because it was assumed that as a special education student, my options were limited. While it is certainly the case that not every student on the spectrum – or every student generally – will be able to attend university, more of us are having that opportunity. It is necessary to see more of a focus on college transition for students on the autism spectrum in both high schools and universities. One of the areas that is frequently ignored in this process is that of "soft skills" related to day to day living. Many of ASAN's parent members frequently are told that issues relating to life skills are not the obligation of school districts, despite the fact that this type of education is just as necessary for students to succeed as the more traditional forms of academics. The communication and executive functioning difficulties that those of us on the spectrum face compound the traditional difficulties that new college students face. In fact, these issues – as well as the matter of transition more generally – are relevant for all students on the spectrum, whether or not college is a possibility. For a successful transition to a post-secondary environment of any kind, basic life skills need to be understood. It is essential that steps be taken to incorporate these elements into the school curriculum in an inclusive fashion.
In a broader sense, educational needs for students on the spectrum must be given additional focus. There has already been a productive discussion on the issue of early childhood educational methodologies. It is important to keep in mind that any educational intervention should be aimed at the acquisition of skills, not trying to enforce an arbitrary standard of normalcy. Efforts should not be aimed at the undesirable and impossible goal of trying to make autistic individuals non-autistic. Instead, education should be aimed at addressing the significant disabilities many of us face with the goal of improving quality of life. We also have to ensure that are educational methods avoid utilizing abusive and dangerous techniques in the name of treatment. The use of aversive interventions, the application of pain as a means of behavior modification, should be considered unacceptable in any society that aspires to be termed civilized. As a result of aversives and abusive restraint practices, many students and adults in institutions are injured or even killed each year. This must stop. We need a full ban on the use of aversives and non-emergency restraint as well as an end to out-of-state placements that put students in facilities that utilize these barbaric methods.
We also have to face up to the persistent problem of bullying and its negative effect on the mental health of all students. Students on the autism spectrum are particularly vulnerable to bullies due to the social literacy issues we tend to have. When I was in school, bullying was one of the reasons I spent a period of time away from my home school. This is a common situation for students on the spectrum and represents a grave obstacle to our legal right of a "free and appropriate public education in the least restrictive environment". I know that the success that I have achieved today would not have been possible had I not returned to an inclusive school setting where I learnt more about how to successfully adapt to the world around me. Yet, as a result of bullying, many students face serious emotional or physical injury if they remain in their home schools. This also must be stopped. Florida remains one of a handful of states without true anti-bullying legislation. I urge the legislators and activists here today to address this problem.
Finally, I turn to the more controversial area of research. Here, the autistic self-advocate community holds strong views that may clash with those of some of the interest groups assembled today. The persistent focus on both causation and cure in the autism research agenda has left promising areas of research ignored would could positively impact the quality of life for those of us on the spectrum. Despite extremely encouraging possibilities in the realm of Assistive and Augmentative Communication (AAC) technology for many individuals on the autism spectrum, research in this area is given little to no funding. The development of best practices in service-delivery and education is too often ignored. Mental health needs, restraint reduction, health care access, transition, adult supports and a variety of other educational and service/support needs could all benefit from more research into best practices and effective methodologies. Yet quality of life-oriented research in general is underfunded. If we spent one-tenth of the money and attention we currently lavish on the idea of an autism cure on communication technologies, countless nonspeaking autistic people would be able to communicate today. The fact that we have not pursued promising avenues of research into communication possibilities should be a source of great concern to us as a society.
There are also concerns that we have about the type of research that is being funded. The autism spectrum represents a natural and legitimate part of human genetic diversity. As a result, efforts to identify genes associated with autism with the goal of developing a prenatal test, enabling the possibility of selective abortion, should be met with opposition from all those concerned about the issue of disability rights. Given the fact that 90% of fetuses that test positive for Down Syndrome are aborted and there exists a similar social stigma against the autism spectrum, I urge both private foundations and government research institutions to re-orient their funding away from research with eugenic applications. While we have no position about the broad issue of abortion, the issue of eugenics is of great concern to us.
Thank you for your time. If we as a society seek to fulfill the values we espouse, we must take practical steps to establish ourselves as a culture that respects neurological diversity in the same way that history has shown us to respect racial, religious, national and other forms of diversity. We on the autism spectrum can make significant contributions to the world around us and, with the right supports, services and education, we can and should be active and participating members of society. By pursuing the goals of inclusion, respect and access, we can make that a reality. I'd like to end with a quote from Jim Sinclair, the founder of Autism Network International (ANI), the first autistic self-advocate organization and a group from which much of the growing autistic culture developed from. ""The tragedy is not that we're here, but that your world has no place for us to be." Today, on the first World Autism Day, I encourage all of us to think about what we can do to change that unfortunate reality and pursue a policy of autism acceptance, now and into the future."
While I agree strongly with the majority of Mr. Ne'eman's and ASAN's positions, there are a few elements of this statement that leave me wanting to discuss the positions in more detail. Specifically, though I share his concerns about genetic research and its implications for eugenics, I also see the potential for genetic research to result in significant quality of life improvements for autistic people. I am not knowledgeable enough about this topic to postulate how best to reconcile these issues.