Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

Discussion continues about autism legislation, and is going to continue here in the US under a new administration. One piece of federal autism legislation that has been passed here is the 2006 Combating Autism Act (CAA), under which the Interagency Autism Coordinating Committee (IACC) was charged to create a Strategic Plan for research in autism spectrum disorders. (Regarding how the CAA was voted on and passed, and on its unfortunate name, go here.)

Over the past year-plus, the IACC has been developing a draft of the Strategic Plan. This draft was reviewed at the IACC’s November 21st meeting and, as review of the plan was not completed, the IACC met again on December 12th to continue review of the draft Strategic Plan and, per the agenda, to discuss cost estimates.

The IACC will be meeting next on January 14th (and go here for how to listen in virtually, via the web or conference call). This meeting will be to continue the review of the draft Strategic Plan, and to make budget recommendations and finalize the plan.  There’s a report about the December 12th meeting on the Autism Speaks website which notes that 38 research initiatives were approved, and that the budget for these will exceed the amounts authorized by the CAA in a certain period of years. The IACC Strategic Plan recommends that more than $1 billion be spent on research objectives.

I was able to listen to some but not to all of the December 12th meeting. Autism Speaks lists 10 of the 38 research objectives, which include (with my commentary on some initiatives and some emphases in italics)

Develop at least one new diagnostic instrument (briefer, less time intensive); [Interesting I think, recalling the two-day-plus process---ordeal---of having Charlie evaluated by a diagnostic team in Minneapolis; might something get missed, though, if the process is hurried up too much?]

Validate a panel of biomarkers that separately, or in combination of behavioral measures, accurately identify, one or more subtypes of children at risk for developing ASD; [At the November 21st and December 12th meetings, some members of the IACC brought up the need for such "biomarkers" repeatedly, as well as the notion of "subtypes" of children who be "at risk" or susceptible to being diagnosed with autism.]

Establish an international network of brain and other tissue acquisition sites with standardized protocols;

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical and developmental profiles of children, youths and adults with ASD change over time compared to typically developing individuals by 2020;

Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 sequencing studies to examine more than 50 candidate genes by 2011;

Study the effect of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines; [Again, the mention of "subtypes" of individuals with certain susceptibilities, such as the so-to-speak "subpopulation of mitochondrial autism."]

Determine design and feasibility of addressing different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups; [Yes, another mention of vaccines; this study being the long-called for study of various "health outcomes" in vaccinated vs. unvaccinated, and not "alternatively-vaccinated groups"---those vaccinated under an "alternate schedule"?]

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors by 2014; [Sounds like the UC Davis M.I.N.D. Institute MARBLES study.]

Standardize and validate at least 20 robust model systems (cellular and/or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions; [But are "features of ASD" as seen in an animal (such as a mouse) model equivalent to features of ASD in human?]

Test the efficacy of 11 evidence-based services for people with ASD in community settings by 2015.[Would like to know about the what and where of these.]

And if the full $1 billion worth of research initiatives are not funded, what studies might be the first to be tabled…………….

Earlier this week, mega-autism-organization Autism Speaks announced the appointment of three new board members, Artie Kempner, lead director for the NFL and NASCAR on FOX; Billy Mann, President of International A & R - Labels and President of Global Artist Management, EMI Music; and Jack Schneider, managing director of Allen & Co.. Kempner and Mann are both fathers of autistic children.

It’s been noted (by Lisa Jo Rudy at About.com) that the new board members include no one who’s autistic. With the rise of self-advocacy organizations like ASAN, and also GRASP and many others, the absence of an autistic member on Autism Speaks’ board seems more and more puzzling. The Interagency Autism Coordinating Committee lists Stephen Shore, a self-advocate, on its roster, and Paula Durbin-Westby, a member of ASAN, was asked to present at the November 21st IACC meeting (and you can view her presentation here). The Autism Society of America has a panel of people on the spectrum of autism advisors; Shore is also on the ASA’s board as is Valerie Paradiz. And ought not most or all autism organizations have an autistic individual on their boards?

Next Wednesday, on December 10, from 2:00 p.m. to 5:30 p.m. ET, there will be a meeting of the Services Subcommittee of the Interagency Autism Coordinating Committee (IACC), to review public comments received in response to a completed Request for Information. When I attended the November 21st IACC meeting, a good part of the agenda was devoted to discussing services and the many needs of adults.

You can view the meeting agenda and also see who is on the committee. The meeting is being held here:

National Institutes of Health
9000 Rockville Pike
Building 31
Conference Room 7
Bethesda, MD 20852

You can attend the meeting virtually via a webinar; to register and access it, go here:

https://www1.gotomeeting.com/register/563207085

Or, to attend via a conference call, here’s the numbers:

Dial-in number: 888-455-2920
Access code: 3857872

And, it’s noted that:

There may be an opportunity for members of the public to submit written comments during the meeting through the web presentation tool. Submitted comments will be reviewed after the meeting. If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

Made it through Thanksgiving; did some holiday shopping from the comfort of home (and here’s some gift suggestions); time to get back on the school bus!

• Autism and Schizophrenia: The Same “Disease”?
  According to the latest theory, “an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways.”
• Girls and Getting a Diagnosis
  Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?
• Denis Leary Tries (Tries) to Defend Himself
  Contrary to what he said a few weeks ago, Denis Leary doesn’t seem to be so sorry after all about what he said
• Nicotine Addiction and Autism
  While studying drug abuse and addiction, researchers at the Ohio State University College of Medicine have found a link between nicotine addiction and autism.
• Mandatory Autism Registry in NJ Proposed
  NJ health care professionals will be required to report those diagnosed with autism at any time from the day they were born through their 21st birthday.
• Increased Use of Antipsychotics in Children (and Young Children) Criticized
  More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger.
• Teacher Suspended For Letting Students Vote Alex Barton Out of Her Class
  Florida teacher Wendy Portillo—who allowed her kindergarten class to vote on whether or not their classmate Alex Barton could remain in class—-has been suspended without pay for a year.
• Off to the IACC
  I attend a meeting of attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research.
• A Wish To Be in the Brownies
  In Wisconsin, after one visit to Girl Scout Brownie troop for girls with special needs in Oconomowoc, the troop’s leaders told 8-year-old Magi Klages’ parents not to bring her back.
• Looking For Autism’s Causes At Home
  MARBLES stands for Markers of Autism Risk in Babies—Learning Early Signs and investigates “biological and environmental triggers that children are exposed to prenatally and post-partum.”
• Refrigerator Mothers, Warrior Mothers: One and the Same?
  Is the “warrior mother” not—as proclaimed in the Warrior Mothers book put together by Jenny McCarthy—the opposite of the “refrigerator mother” of the previous generation, but rather her “distorted mirror image”?
• 28-year-old woman’s death under investigation
  The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent at the IACC—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.
• Something Else to Be Thankful For
  I’m thankful everyday to be Charlie’s mother.
• What’s In Your Library?
  What books about autism are in your library?
• Measles Aren’t Going Away, They’re On the Rise
  1049 cases of measles have been reported in England and Wales so far this year, the highest number in 13 years and exceeding the number on 2007, when there were 990 case

If you weren’t able to listen in to yesterday’s meeting of the IACC meeting, this is a brief summary:

In the morning, the committee members reviewed the draft of the Strategic Plan and “wordsmithed” various additions and revisions suggested by various members of the IACC. These revisions included:

• the use of “may” or “can” in regard to describing the effects of Early Intervention
• mention of “comorbid” and “co-occurring” (medical) conditions
• a lengthy discussion about vaccines and about what science and evidence there is to refute or support a link (it was decided to include the statement “the weight of the available evidence does not support a link between autism and vaccines”—more details about this are below)

Much more of the draft of the Strategic Plan remains to be reviewed and there was talk about the committee reconvening in December to finish reviewing the revisions.

Paula Durbin-Westby of the Autistic Self-Advocacy Network (ASAN) gave a well-received presentation on the need for ethics in autism research. There’s a need for research on the strengths of autistic individuals, she said, and on the positive aspects of difference, and it’s necessary that autistic individuals be fully represented on the IACC.

In the afternoon, there were detailed presentations on Medicare and Medicaid and on waivers (prompting the Chair of the IACC to note that these systems are as or even more complex that various topics in biochemistry); on the pressing need to focus on adult issues (will the employment rate for autistic persons be better in the future?, Dr. Cathy Pratt asked); on the waivers and other programs in Pennsylvania’s Bureau of Autism Services; and on the Autism Spectrum Disorder Pilot Program in Connecticut.

Pamela Beck spoke about her 24-year-old son Brandon Beck and the self-direction model. The Executive Directors of two agencies providing services and supports for adults in California (Dr. Jeffrey L. Strully of Jay Nolan Community Services) and in Maryland (Ms. Emily Homer of VOCA of Maryland D.C.) described the realities and successes of their programs, and of the intense need for staff: What are traits of staff who are really good at supporting people?

After comments from six members of the public, the meeting was adjourned.

There’s more to note—-will end for now with a quote from Lee Grossman, President and CEO of the Autism Society of America:

“”it’s what we hear the community is asking the most for—lifespan services.”"

I’m on the train to Washington D.C., to attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research. There’s a list of the federal and non-federal members of the IACC here; the committee has been overseeing the writing of the Strategic Plan for Autism Spectrum Disorders (ASD) Research. Over the past year, there have been numerous calls for input from “stakeholders”—from anyone concerned about autism—and other meetings of the IACC and of workgroups concerning various parts of the plan.

I went to an IACC meeting just about a year ago and read this statement. While I wrote up and sent in a statement for today’s meeting, there apparently is not space on the agenda for me to read it at the meeting, though I was told that copies of my statement will be included in folders given to the members of the committee. I emphasized the need to focus on research that can directly affect and improve the lives of autistic individuals here, now and today, and on the need to provide education and services for autistic individuals in the community, and that integration and inclusion are not goals to be aimed at, but simply essential.

Time and again in the past years raising Charlie, we’ve more than once heard the suggestion (sometimes a very strongly put suggestion) that Charlie be sent “out,” as in to an “out of district” school placement, where he would be very much outside the community, the people, that he lives in. While we have in the past been interested in Charlie attending a private autism school where all the teaching might be geared towards kids with his sorts of learning profile, I really think that he would lose something if he were not in daily (if limited) contact with kids his age, in a setting that kids his age are generally in.

At the moment, this setting is middle school. I visited Charlie’s classroom on Monday: It’s a well-ordered environment. Charlie uses a schedule broken down into a series of small binders throughout the day. There’s photos, small phrases, and Language Master cards velcro’d to the pages, and he knows to get the different binders and work through the pages.

The physical environment of his classroom is more, what shall I say, institutional-seeming than last year—he’s in a lower-ceilinged room with windows that look out onto a hallway, across from a small courtyard—generally, it’s the whole middle school (with some 1400 students) that seems more “institutional-seeming.” It’s a huge 70s-ish building with lots of shades of brown, all on one level, and without the aesthetic attributes of the town’s high school and elementary schools. It is, indeed, a middle school, playgroundless and the first step towards some kind of adulthood not only for Charlie and his three classmates, but also for every other student at the school. There was a fire drill when I visited. The 1400 students plus many, many teachers and staff all streamed out and stood in neatly ordered rows before streaming back in. Uncertainty, simple bafflement, the wish to run and loll about on the grass, yawns—-these were all to be seen in many of the students.

I thought of Charlie’s struggle to accommodate himself to getting up earlier and to a much earlier start to his school day. Seeing the while middle school out on the grass together, dutifully and somberly lined in rows for a fire drill, many pretending not to shiver in short sleeves though they’d been told to get their coats, it occurred to me that Charlie’s not alone in feeling a sort of loss and puzzlement at finding himself in a bigger setting, and with so many more expectations and demands placed on him. And yet—-

And yet, back when I was just starting to teach (before Charlie was born), I taught Latin at a private school in St. Louis, Missouri. I taught both middle and high school students and was surprised to discover that that 7th and 8th graders seemed so often the most eager to learn, the most determined to know every miniscule thing about third declension i-stem adjectives; the most curious, intellectually and otherwise. And, the most uncertain, insecure, and defiantly confused about anything social (and, of course, involving the opposite sex).

Charlie’s different in ways small and profound from his peers. He doesn’t have homeroom as he stays in one classroom; he doesn’t have science or social studies and he’s not in his first year of learning a foreign language. But he is one among many other kids in our town; he’s not hidden away, and he’s not at all forgotten.

And I guess it’s to make sure that he and kids and individuals like him are never forgotten, segregated, or give second or worse-class treatment, that I took the 5.46am train to Washington, D.C.

Go here to see the agenda for the November 21st meeting.

Tomorrow, September 30th, is the deadline to submit a comment regarding the Interagency Autism Coordinating Committee (IACC)’s Draft Strategic Plan for ASD Research. Feedback is sought from ASD stakeholders which means—as you’re reading this blog—you: individuals with ASD and their families, scientists, health professionals, therapists, educators, officials of state and local programs for ASD, and the public at large. The draft Strategic Plan can be accessed via this webpage (scroll down for a link to a PDF file). (The draft Strategic Plan does not include cost estimates for implementation; a workgroup has been formed to advise about the IACC budgetary requirements needed to fulfill the research objectives described in the draft Strategic Plan.)

Responses to the plan should be directed to iaccservices@mail.nih.gov . The IACC will review the workgroup recommendations at its next meeting on November 21, 2008. Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line. Go here to see the official RFI notice NOT-MH-08-021, and here is the IACC website.

The draft Strategic Plan addresses these questions:

• When should I be concerned?
• What are the early warnings signs?
• Are there typical characteristics that are part of an ASD diagnosis?
• How much variation is there in symptoms and severity associated with ASD?

• How can I understand what is happening?
• What is happening early in development?
• Are there known biological differences that help explain ASD symptoms?
• Are there subgroups of people with ASD that have been identified?

• What caused this to happen and can this be prevented?
• Is there something in my genetic or family history that poses a risk for ASD?
• How might genetics and/or the environment influence the occurrence of ASD?
• Could an exposure to something in the environment lead to the development of ASD?

• Which treatments and interventions will help?
• When should treatments or interventions be started?
• What are the medical issues I need to know about?
• How do I know that treatments are both safe and effective?

• Where can I turn for services?
• What types of services and supports should I seek and where can I find them?
• What is my state or local government doing to provide services for ASD?
• What is the cost of interventions and how will it be paid?

• What does the future hold?
• What will my family member be like when he/she gets older?
• What is known about adults with ASD and how can I plan for the future?
• How does American society support individuals with ASD?

When does one first detect signs of autism in a young child and how “severe” is a child’s autism, and how come my autistic child can’t do somethings (like talking) that other autistic children can? What causes autism—-how did this happen? What can I do as far as medical as well as educational treatments? And what about getting by day by day—-what about services, where do I find them, are some towns or even states better than others? And what will happen to my child as she or he grows up—-what if my child still needs a lot of supports and staff when I’m old?

That’s my paraphrasing of the main questions the draft Strategic Plan addresses. For each question, the draft Strategic Plan identifies an Aspirational Goal as well Research Opportunities, Short-Term Objectives, and Long-Term Objectives. I’ll quote the Aspirational Goals:

• Children with or at risk for ASD will be identified by 24 months and receive appropriate interventions.

• Discover how ASD affects development which will lead to targeted and personalized interventions.

• Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.

• Interventions will be developed that are effective for reducing both core and associated symptoms, for building adaptive skills, and for preventing the disabilities associated with ASD.

• Communities will implement high quality, evidence-based and cost effective services and supports across the lifespan for people with ASD.

• Advances in intervention, education, and services will support and enable individuals on the autism spectrum to lead fulfilling and productive lives in the community.

How to develop services and education to enable my son to lead a “fulfilling and productive” life and in the community—-that’s my main focus in the comment I’m writing. I’m in favor of devoting as many resources as we can to actual, alive and breathing autistic individuals. I’m always interesting in finding out more about the causes of autism. But I’m not sure resources are best used to find out how to prevent autism in children who have yet to be born, when so many children (like the child of the mom I just spoke to on the phone tonight) don’t have enough services and don’t have the right kind of educational program. That’s when life with autism feels hopeless and endlessly awful, and yes, there’s been a lot of time when our life with Charlie has been extremely difficult and when we’ve been through way too much; when he’s been through way too much: He’s only 11 years old, but he’s moved households eight times, been labeled a danger to himself and others, been in effect expelled from the schools in one public school district, had people look at him in not kindly ways and mouth “something,” just because he is who he is.

I talk, sometimes rather ad infinitum if not ad nauseam here about school and the importance of high quality education and program for autistic individuals. Charlie has always done best, and been happiest, when the better part of his day has been busy and his mind kept engaged and stimulated. Sitting in a regular classroom with other children does not provide this for Charlie; I know he’d try to sit and listen, but after a few minutes he would probably be asking for a break. We’re lucky that he’s in a classroom where the teachers and therapists know how to individualize their teaching to what Charlie needs, and who have helped him to manage his anxiety and, slowly, communicate this more to us.

And maybe it seems like a small small thing to talk about “better services,” and that we should rather  seeking ways to prevent autism and cure it. I really am convinced that, not too long ago, Charlie would have been packed off to a residential placement relatively early and I think, I hope, we’re slowly on our way to developing ways to enable autistic individuals to be educated and be included in as many ways as possible in their communities and at home. And really to do this right for all autistic individuals and their families—-this is something to aspire to indeed.

At the risk of being repetitive: Be sure to get your feedback in to the Interagency Autism Coordinating Committee (IACC). Send in what you think about comments about autism services by September 19, and also your comments about the draft of the Strategic Plan for ASD Research by September 30.

Also, you can go here to review the NIH’s Autism Spectrum Disorder Research Portfolio. Last year (FY 2007), the National Institutes of Health (NIH) devoted $127 million to research autism spectrum disorders through “grants, contracts, research projects conducted as part of the NIH Intramural Research Program, and other mechanisms of support.” In addition, NIH invested $3.9 million in the development of the National Database for Autism Research (NDAR). In FY 2006, $108 million was devoted to research on ASD’s. Go here to see the NIH Autism Spectrum Disorder Research Portfolio; this is how much was allotted to various areas of research:

Genetics/Genomics received $20,670,059 in funding; many other research areas also received significant funds. Clinical Neuroscience received $22,407,705; Behavioral/Psychosocial research received $10,275,206; Environmental Influences and Gene X Environment Interplay received $6,672,090; Education and Dissemination received $4,149,842.

Am finishing off my own statement before sending it off to the IACC.

The Interagency Autism Coordinating Committee (IACC) coordinates research and efforts pertaining to autism spectrum disorder (ASD) within the Department of Health and Human Services (DHHS). On August 11th, the National Institute of Mental Health issued a Request for Information (RFI): Priorities for the IACC Services Subcommittee for Autism Spectrum Disorders (ASD):

The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

The IACC is looking for your input and ideas about

….high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.

You can send in your responses (limited to one page) to iaccservices@mail.nih.gov , no later than September 19, 2008, and marked with this RFI identifier, NOT-MH-08-016, in the subject line. Responses will be collated, summarized, and provided to the IACC Services Subcommittee and to the public, and the collected information analyzed and used in reports. The Service Subcommittee meets on September 15th to discuss all comments received to date (information here to attend via conference call) and will present these at the next meeting of the IACC, on November 21, 2008.

“Education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning”—these are the issues I’m most concerned about and have been concerned about, and will be writing to the IACC about. The Arizona Republic describes another approach to housing for disabled adults: Placing a child in the home of a home of a licensed caregiver full-time. I read about these arrangements and think, that would never work for Charlie, and I just don’t know, and what will happen when he’s older……. How can we start planning and working to create the best possible life for Charlie and individuals like him, right now and throughout their whole lifespans?