Say Anything Blog

Below are two recent posts from Autism Vox. One is about the refreshing recognition that autistic individuals and other individuals with disabilities should be included in religious communities. The other is a disturbing demonstration that not everyone is willing to make that happen.

Autism and Faith: A Journey into Community

Autism and Faith: A Journey into Community is a new resource for clergy, religious educators, and families of autistic children to develop “inclusive spiritual supports” for autistic individuals in religious settings. The 52-page guide was developed by the Autism and Faith Task Force of COSAC, New Jersey’s main autism organization, and the Elizabeth M. Boggs Center on Developmental Disabilities, which is in the Department of Pediatrics at UMDNJ-Robert Wood Johnson Medical School.

Priest Files Restraining Order Against Parents of Autistic 13-year-old

This story about a Catholic priest filing a restraining order against the parents of an autistic 13-year-old to keep them from attending church on Sundays in Bertha, Minnesota, is why resources like this are more than needed—-and a spirit of inclusion and mutuality.

It’s a bit disturbing to see some arguing in the comments that the priest was right to seek a restraining order against this family. We aren’t the first family in our church to have special needs children and we won’t be the last. I’m fairly confident that if our boys ever got to be “big and scary” the last thing on anyone’s mind would be trying to convince us not to come to church any more.

Sam of Uncle Sam’s Cabin.

The cold weather and the recent remarks by Jeremiah Wright have enticed me to break my blog fast. The short version of my thoughts is that Wright is trying to hijack Christianity for his own purposes and he is trying tar and feather black Christians in America specifically with his views.

The long version is thus. The things that Wright has been saying recently are not new. I’ve heard them many times before, usually right before someone starts laughing. Anybody seen the movie Undercover Brother? Pay close attention to the character Conspiracy Brother. He and Wright would get along famously. I can’t take credit for coming up with that comparison. I adapted it from a commenter on this post. But I digress.

Wright’s proclamation that the negative reactions to his remarks are an attack on the “black church” was just too much. To attempt to tar black Christians in America with his views is...I’m trying to find the right word to use here without being too rude (Wright does claim to be a man of God after all and I was raised to respect those in that office) but I’m drawing a blank. Wright’s implication that his views are representative of the “black church” is a bit like the white person who thinks that their racial prejudices are acceptable because they have black friends.

I would like to remind Mr. Wright (and anybody else who has forgotten) that as far as God is concerned there is no “black church” there is only The Church, the world wide body of those who believe in Jesus Christ. Wright’s wanting there to be a “black church” that thinks as he does to save his hide and to hide behind clearly states where his priorities lay. To the genuine Christian the fact that they are a Christian comes first and is far more important than any other group affiliation. A Christian’s affiliation with Christ shapes all other group affiliations not the other way around. That is the standard that the Bible calls Christians to live by. Wright apparently wants black Christians in America to do differently.

One last comment. Yesterday I listened as Wright dismissed a question about his comments about America’s chickens coming home to roost during one of his sermons because the reporter admitted to not listening to the entirety of the sermon. Aside from his behaviour being rude I thought his reasoning was also wrong. One does not need to roll up on a Klan meeting to understand the full context of what they believe. Wright’s meaning and intent were clear then and is even more so now.

Check out Baldilocks’ response to Wright’s performance so far.

Sam of Uncle Sam’s Cabin.

I got to see the first graders at my sons’ school put on a musical a few days ago. It was a delightful experience to watch the kids sing, dance, and belt out their lines on stage. Our neighbourhood elementary school has quite a few special needs students. They seem to do the best job at educating these students compared to other schools in the district. While there were no doubt students on stage with learning disabilities who could not be easily marked as such there were some students whose disabilities made them stand out in the crowd. I was glad to see them there.

In the past those students would never have had the opportunity to participate in anything as enjoyable as a school musical. They would have been shut away from view so as not to make the rest of the “normal” folk uncomfortable with their presence or burden themselves with the work of understanding them. These children would have been medicated into submission and left to languish in institutions or shut away at home by parents trying to protect them from a cruel and unbending world that feared them.

With the assistance of teachers, classmates, and assisted communication technology these students were able to sing and dance with their classmates. Even more encouraging their non-disabled classmates accepted their special classmates without rancor. Kids can seriously torment their peers for any perceived difference but when taught otherwise they can be quite angelic.

I wondered if any in the audience resented the time and resources that were spent to make these kids a part of the school community. If they did they kept their quiet about it. In any case a good time was had by all.

Sam of Uncle Sam’s Cabin.

There are a lot of extra costs associated with caring for autistic individuals, particularly when they are young. Apparently someone has taken the time to do a study on what it costs to care for autistic children.

Association of Childhood Autism Spectrum Disorders and Loss of Family Income

Data collected from 1999 to 2000 showed that each year U.S. taxpayer dollars collectively pay $12,773 of the annual education expenses associated with each child with autism. In spite of this assistance, ASD-affected families still bore the brunt of the financial burden. Between un-actualized income (again, estimated near $6,200) and extensive out-of-pocket ASD-related expenditures – one 2006 national study from the University of Rochester estimated that these families paid nearly $5,300 more than other families – this direct-to-family cost may exceed $11,000 each year.

Recent research has shown that parents of children with emotional and behavioral disorders lack appropriate community-based services and resources needed to support work and family obligations. Families with a child with a serious disability often accommodate family and work obligations to the requirements and behavior of the affected child. Lack of resources that fit the special needs of the child can have a significant impact on work and family functioning, leading to significant difficulty in establishing a work-family balance.

Kristina of Autism Vox notes,

Even if one is not paying for specialists and therapists who can cost a few hundred dollars an hour (depending on what they are providing), money just becomes an issue for families with a special needs child. First of all is the matter of work: A child may have so many needs, and need such constant attention, that one parent is simply not able to work. Second, as noted, kids with special needs often need specialized educational therapies and medical treatments.

The reader comments on her post are an enlightening read on what it costs families to care for their loved ones. It’s a price we are willing to pay because to us it’s more than worth it.

Sam of Uncle Sam’s Cabin.

I meant to post this earlier but got sidetracked by life.

Early morning, April four
Shot rings out in the Memphis sky.
Free at last, they took your life
They could not take your pride.

In the name of love
What more in the name of love.
In the name of love
What more in the name of love.

Pride (In The Name Of Love)
The Unforgettable Fire
U2

A bit inaccurate since King was shot in the evening but haunting none the less. Today is the anniversary of Martin Luther King Jr.‘s assassination in case you were wondering what this is about.

Sam of Uncle Sam’s Cabin.

This is just a small portion of the address by the president of the Autistic Self Advocacy Network (ASAN) on World Autism Day at the Florida Autism Task Force’s inaugural meeting. It stands in stark contrast to the way that other advocates speak about autism and autistic individuals.

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.

Sam of Uncle Sam’s Cabin.

Should we refer to an individual as “autistic” or “a person with autism”? Some people are very diligent about drawing a distinction between the two and making a point of saying that they will only use one. Usually they choose “person with autism”. I didn’t really care about the distinction until I started working on this post.

I’ve leaned more towards “autistic” because it is far less cumbersome to say and write. But many would argue that merely saying “autistic” de-emphasizes the personhood of the autistic individual while “person with autism” recognises that the individual is “a person first”.  I disagree with that mode of thinking.

I’ve cooked up this niffty little graphic over here to help me make my point (no wise cracks about my graphics skills please). What is it? It’s a cup. What kind of cup? It’s a red cup. Does the fact that it’s red make it any less of a cup? Not to my mind so why bother with saying something like “a cup that happens to be red” (equivalent to “a person with autism”)  instead of just “a red cup” (equivalent to “autistic”)?

My analogy breaks down a bit because red-ness does not imply cup-ness. However, personhood is implied in the term “autistic.” It is a descriptor that is only appropriate for people while red can appropriately describe a multitude of things. “Person with autism” suggests, even though the people using the term would (I hope) deny believing such a thing, that autism can exist without personhood. That’s not something that I want to imply.

In any case, I think a more important distinction to make in how we use language in discussing autism is to recognise that people are autistic for life. Autism is not a childhood something that will fade away with time. The autistic kids that we worry about today will grow up (with that that entails) to be autistic adults each one as different from the other as snowflakes. They will still need our love, support, and compassion then. There are autistic adults today who need it now.

Sam of Uncle Sam’s Cabin.

Today is the first day of Autism Awareness Month. I spent this morning in a room with 8 or so other parents of autistic children (one dad, go dad!) and one autistic adult. She was diagnosed at the age of 36 or so and is just now hitting her forties. In her words autism is as new to her as it is to us parents.

We peppered her with questions about her past, present, and future. She was very candid about the amount of effort it took for her to sit and interact with us. From the preparation she had to do before hand (watching videos in the morning to get her words back, not unlike the non-autistic who can’t function until they’ve had at least one cup of strong coffee in the morning, the picture schedules that remind her of the proper sequence for getting dressed in the morning, etc.) to the anxiety and sensory overload she would have to deal with afterwards (head banging, screaming, rocking, and other stiming behaviours to relieve her stress).

The stories that she told of past abuse at the hands of people who had no idea what to do with her were sobering. Years of mis-diagnosis, in and out of inappropriate institutions, misunderstood and mistreated by her own family. Her over all positive attitude despite all of strife and sorrow in her life was encouraging. She reminded us of the advantages and blessings that we have today that weren’t available to her or her family when she was younger.

We all laughed together. We shared hopes and fears. We comforted those of us who were brought to tears by the love and burdens we bear for our children. We shared the wonder and awe at the things that our children have thus far accomplished (such as defeating every safety device that mom or dad installs to keep them from wondering off).

We talked about the stigma attached to autism. The misconceptions about what autism is and what autistic people are like. The frustration of family members in denial about the presence of autism in the family. The annoyance of having to deal with people who stare or who draw back as if autism is a contagious plague. We shared about the little (or not so little) bits of autism we have discovered in ourselves as we get to know our children better.

It was a refreshingly honest and realistic way to kick off the month for me. The public will be bombarded with the usual hysterical stories about vaccines, disparaging portrayals of autistic individuals, and interviews with vapid celebrities during this month of awareness. I got to sip from the fount of knowledge that is an autistic adult. (I still can’t believe that a certain celebrity spokes person, who shall remain nameless, who is supposed to be educating the public about autism, once admitted that she didn’t know any autistic adults.)

Sam of Uncle Sam’s Cabin.

My sister emailed me this little gem to the left yesterday. I couldn’t resist sharing it.

Spitzer Resists Calls to Resign

New York governor Eliot Spitzer resisted mounting calls for his resignation Tuesday, as he first tried to work out an agreement with prosecutors not to file criminal charges against him.

[snip]

Mr. Spitzer won’t resign until he reaches an agreement with the government not to pursue charges, say those familiar with his legal team’s thinking.

A poll released late Tuesday found that 70% of New Yorkers think Mr. Spitzer should resign, while 66% believe he should be impeached and removed from office if he doesn’t. “It’s a big thumbs down,” said Lee Miringoff, director of the Marist College Institute for Public Opinion, which conducted the poll. “It points to just how politically untenable his position is right now.”

Even if Mr. Spitzer resigns, 49% of New Yorkers said he should face criminal charges. The telephone poll conducted Tuesday surveyed 624 registered voters and had a margin of error of plus or minus four percentage points.

• Local reaction to Spitzer scandal
• Spitzer Scandal-Analysis
• How Spitzer’s scandal is affecting Albany
• Pollster on Spitzer scandal
• State Lawmakers React to Spitzer Scandal

As Governor Spitzer clings to the governorship like a leech clings to the backside of a skinny dipping hiker I wonder if this scandal will damage the Democratic party in New York state enough to turn it into a red state. Probably not. While less than half of New York’s counties went blue in 2004 they happen to be the more heavily populated counties.

Sam of Uncle Sam's Cabin.

So how long is it going to take before Governor Spitzer’s imminent resignation becomes an actual resignation? The longer he waits the slimier he looks. It’s one thing to be caught in hypocritical and morally reprehensible behaviour. It is several magnitudes worse to try (apparently) to weasel out of the consequences of such behaviour. For the sake of the state and the government that he once promised to clean up Eliot Spitzer needs to depart the governor’s mansion, now.

State Republicans are already planning to start impeachment proceedings if Spitzer doesn’t depart soon. As more details come to light I can’t really blame them.

Sam of Uncle Sam’s Cabin.

Now that the initial shock over Elliot Spitzer’s involvement in a prostitution ring is starting to wear off, and as Spitzer has yet to resign, I’m feeling less sorry for him. Spitzer is now being caught on a bed of nails that he made for himself (Spitzer Gets Spitzered).

Spitzer earned his place on my people-I-will-never-vote-for list with his pursuit of crisis pregnancy centers in New York city some years ago. In fact I created that list just for him. I find it ironic that Spitzer had to cancel his morning meeting with an abortion rights group that was advocating for a particularly repugnant abortion rights law because of the prostitution scandal.

A note to New York state Republicans, y’all might want to stop talking now. Really.

Sam of Uncle Sam’s Cabin.

Updated


Uh...

NY Governor Linked to Prostitution Ring

NEW YORK (AP) — The New York Times is reporting that Gov. Eliot Spitzer has told senior advisers that he had been involved in a prostitution ring.

Spitzer is scheduled to make an announcement Monday afternoon. Spitzer officials wouldn't immediately comment on the story.

Spitzer, 48, is married and has three daughters.

Details about the prostitution ring were not immediately clear.

UPDATE 1-NY Gov. Spitzer tied to prostitution ring - NYT
Spitzer was due to make an announcement at 2:15 p.m. EDT (1815 GMT), the Times said.

As state attorney general before being elected governor in November 2006, Spitzer was sometimes called the Sheriff of Wall Street for his prominent role in investigating financial cases.

A Democrat, he entered the governor's office promising reform but soon entered into a conflict with Republican leaders in the state Senate, slowing his agenda.

He has been married to Silva Wall Spitzer since 1987 and they have three daughters.

That odd sound you hear is the collective jaw of New York state hitting the floor.

Update
According to Fox News Channel Governor Elliot "Steamroller" Spitzer is going to resign.

I was hoping that this would turn out to be another New York Times smear campaign. I've never voted for Spitzer for anything, and I never intended to but, damn. I wouldn't wish this on my worst enemy.

Update 3:13 PM EDT:
Now Fox News Channel is reporting indictment. Just damn.

Michelle Malkin has an extensive post on this mess.

Sam of Uncle Sam’s Cabin.

Updated

Day light savings time (DTS) is a cruel joke played on parents with small children. Instead of having my usual 2.5 hours to get everyone ready for church I've now got 1.5 ours to strong arm 4 people into washing up and putting on clean clothing all at the same time. For the next few weeks I will be dragging myself, hubby, and my kids out of bed before any of us are ready thanks to this arbitrary messing with our internal clocks.


Update: Adding to my discontent is the sheet of ice holding the doors closed on the minivan.

Sam of Uncle Sam’s Cabin.

Autism is in the news again. This time some of the usual suspects are hoping that the public will believe that a child with a pre-existing mitochondrial condition who had a reaction to a vaccine is proof that vaccines cause autism. The NPR report on this has the headline, Case Stokes Debate About Autism, Vaccines.

Julie Gerberding, who heads the Centers for Disease Control and Prevention, said, “The government has made absolutely no statement indicating that vaccines are a cause of autism.”

“That is a complete mischaracterization of the findings of the case and a complete mischaracterization of any of the science that we have at our disposal today.”

But that remains a hard sell to parents of autistic children, such as Becky Estepp of Poway, Calif. She says the reaction her son Eric had to a hepatitis B vaccine in 1998 was immediate and severe.
Emphasis mine.

That sentence really should read “a small and unrepresentative group of parents of autistic children”. I am not one of the crowd hoping to blame autism on Big Government, Big Pharma, or Big Toxins (as the evidence mounts that the previous vaccine villain thimerosal has no connection to autism the focus is shifting to an amorphous “something” or nebulous “toxins” in vaccines). The Polings (the parents of the child in this case), Becky Estepp, David Kirby (a vaccines-causes-autism proponent who made public confidential information from this ruling) and others who insist that vaccines cause autism do not and never will speak for me or my children. Please don’t EVER think that people like this EVER speak for me and mine.

The most troubling thing about what people are claiming about this ruling (rather than what the ruling actually says) is that people will use it as an excuse to not vaccinate their children. As I sit here with my 17 week old peanut intermittently going through a gymnastics routine in my belly I have to worry if one of these unvaccinated individuals is going to expose my child to a life threatening disease before he/she can be vaccinated against it.

Not too long ago the World Health Organization and other aid agencies were well on their way to eradicating polio in Africa. Then some idiots started spreading rumors that the polio vaccines were contaminated with the AIDS virus and that the vaccines were making people sterile. They claimed that the evil infidel West was trying to destroy Muslims by infecting them with AIDS and/or sterilizing them.

Vaccination rates dropped and polio out breaks began to kill and cripple (Vaccine boycott spreads polio, Spread of Polio in Africa Makes UN Fear a Major Epidemic). Those who keep pushing the myth that vaccines cause autism are no better than those who spread the rumors that polio vaccines were contaminated with AIDS virus or that they made people sterile. Both have, and will continue to, cost people their good health and their lives.

Informative commentary on the Poling case:

• The Case of Hannah Poling
• It’s Not Our Fault!!
• Evidence of Misinformation
• Does My Autistic Child Have Mito?
• Vaccines and Autism: Can the Causal Link Be Proven in Law?
• Autism, Mito, Vaccine Court, and the Polings

Sam of Uncle Sam’s Cabin.

This has nothing to do with this post except that it generated the following thought. The Death of Taxes is a Discworld character that I would love to see Terry Pratchett write.

Sam of Uncle Sam’s Cabin.