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Paul Offit’s Mythical Millions (v. 2)

22 Dec

This is a PUBLIC DOMAIN document (dated 12/11/09, revised 12/12). It may be copied, forwarded, cited, circulated or posted elsewhere. The author requests only that it not be altered from its current form.

Breaking news: Dan Olmsted and AoA have finally admitted that CHOP paid Paul Offit $6 million, not $29M, $45 or $55M, for the Rotateq patent.
So why isn’t the Evil Possum sneering and laughing a single “HAH!” of contempt as he surveys the smoking wreckage and broken bodies of his enemies?

Because, the “correction” was embedded in another hate piece against Paul Offit, “Counting Offit’s Millions.” Here are some of the things Olmsted has to say to rationalize his earlier incompetence and/or dishonesty, and justify further suspicions against Paul Offit, and what I have to say in reply:

“Our new estimate of Offit’s total profit of $13-35 million through 2019, overlaps the range of our original estimate of $29-55 million. Both those estimates exceed Offit’s recent — and apparently partial — disclosure that he made `about 6 million.'”

I object strongly to the reference to this statement as “recent”. I posted it on “Evil Possum” (See “Offit’s Mythical Millions (v. 2)” back on August 18. I would also remind everyone of Dr. Offit’s statement to me: “CHOP sold its patent for $182 million. This information was made publicly available and was published in the Philadelphia Inquirer at the time. The inventors, Fred Clark, Stan Plotkin, and me split 10 percent of that three ways. This means that we each received about $6 million.” As we shall see, AoA is not trying to dispute this. They are arguing that he received more money from other sources. Fair enough, but that does not make his disclosure “partial”. It should be clear from context that Offit is disclosing the amount he was paid from the CHOP inventor’s share.

“Offit’s recent revelations do little to change our conclusion, that he was `voting himself rich’ while sitting on a government vaccine standards body.”

This “conclusion” would make no sense even if their original “estimate” were correct. From the standpoint of ca. 1999, even in the event of the recommendation of rotavirus vaccination the eventual development of Offit’s own patent into a commercial product was uncertain at best and improbable at worst. So, as long as the charge is intentionally using his position to pursue anticipated monetary gain, accusers don’t have a leg to stand on. It should also be noted that they have not offered any evidence that Offit made a single decisive vote on the issue.

“Based on two crucial new disclosures from Offit, we estimate in a revised and more detailed analysis that Offit has received and will continue to receive multiple payments based on Rotateq® licensing revenue, that he may already have earned $10 million from Rotateq® and that he stands to earn between $13-35 million over the lifetime of Rotateq’s key patents (based on different assumptions regarding the product’s future worldwide sales forecasts).”

At this point, any sensible person should be thinking, “Consider the source…” When Olmsted was working from figures and other facts that could easily be established from a few public records, he came up with a “minimum” of $30M for a payment whose actual amount was $6M. He also seems to have overlooked such basic things as the prominent listing of CHOP on Clark’s and Plotkin’s resumes and a clear statement in the CHOP document used as a “source” that a policy was not applicable to patents disclosed before July 1, 2005. So why should anyone put much trust in what he has to say on more complex issues, especially market projections?

“(Paul Offit) has thrust himself into the spotlight as both a vaccine safety authority and an autism expert, spokesman roles that have little to do with his work on Rotateq®. “

This is an entirely frivolous criticism. It cannot seriously be disputed that he is a “vaccine expert”. As for the label of “autism expert”, that is not a label Offit has applied to himself. The only place I personally have seen it applied it to him is in the sarcastic headline of an October 26 AOA post.

“Most notably, we have received hostile (and in one case threatening) messages from readers who take issue with our estimates. Although these threats have concerned us, they have also been a useful source of new information, the full implications of which our critics had clearly not grasped.”

I think it is not improbable that this is directed against me; in another instance, I have been referred to by name as “abusive”. In the interests of completeness, here is the text of a private email sent to Mark Blaxill: “I have attempted several times to post additional comments on article `Voting himself Rich’. I recognize that I have allowed the tone to get overly harsh, and I would rather discuss this in a private discussion, before posting my own work in progress… If you have any response or emendation to offer, I will duly note it in any public posting. But your previous report and response, as such, cannot stand.” So, what in this is “threatening”?

“(W)e have been unable to fully explain the $29 million difference between Royalty Pharma’s reported payment ($182 million) for CHOP’s royalty interest and CHOP’s reported proceeds ($153 million) from the monetization of its royalty rights.”

This is a decidedly frivolous aside, unless Olmsted wishes to imply that Offit’s disclosure regarding the CHOP sale is incomplete. By this point, any remaining “mystery” is on par with “What happened to Jimmy Hoffa?”: What we don’t know, can easily be guessed! It is reasonable to suppose about $18.5M was paid to the inventors. As for the other $10.5M, that could be accounted for by any number of things. Filing a patent costs money. Arranging the sale of a valuable intellectual property costs a lot of money. I attempted to explain the inevitable expenses in one of the few posts that were not censored by AoA: “I’m sure the 29M would include payments to others; for example, a 15% fee is typical from inventors’ royalties.” It should have been clear that I was no longer just discussing the inventor’s share, but also the presumable expenses related to the patent and sale. A reply by Mark Blaxill completely failed to acknowledge the issue: “David Brown, please read the article before making incorrect statements… Offit would have received the entirety of the CHOP inventor’s share.” Olmsted’s continued display of bafflement likewise shows a failure to apprehend (or openly acknowledge) just how far the claims of the original article were from what was known or even plausible.

“Based on the current CHOP policy, it is clear that such private arrangements between inventors are anticipated. `If there is only one such Inventor, Author, or other creator, the total Inventor Share is payable to that person’ reads the `Patent and Intellectual Property Policy” from CHOP’s Administrative Policy Manual. But `where there is more than one such Inventor, Author, or other creator, and all such persons unanimously agree in writing how the Net Income should be distributed among them … then the Net Income will distributed in accordance with such agreement.‘ According to Offit, he, Clark and Plotkin reached a private agreement to share the inventor proceeds, which resulted in a three way split of the inventor distribution.” (Underlining added)

This passage caught my attention because it seemed eerily familiar, and not just because I had read it in the CHOP patent policy manual. Just now, I was checking on my first draft (no longer online) of “Offit’s Mythical Millions”: “CHOP’s manual, cited by Blaxill and Olmstead, makes the following statements: `The Inventor Share… is the total amount payable to all Hospital Personnel who are Inventors, Authors, or other creators of the Intellectual Property… Where there is more than one such Inventor, Author, or other creator, and all such persons unanimously agree in writing how the Net Income should be distributed among them… then the Net Income will distributed in accordance with such agreement… (If) all such persons have not unanimously agreed on the distribution… then the IPA, or his/her designee, will determine an appropriate allocation of Net Income among the Inventors, Authors, or other creators… Each Inventor, Author, or other creator will be entitled to receive his/her Inventor Share of Net Income in accordance with this policy whether or not he/she remains Hospital Personnel. In the event of the death of an Inventor, Author, or other creator, such Net Income will be paid to his/her estate.’ (All italics added.)… It is also clearly the hospital’s intent that coworkers settle the issue among themselves. The implication is that the division of the share among a team would be negotiated among the team as a whole, with a reasonable balance of bargaining power even between a leader and his subordinates.” (Underlining new.)

Given the degree of similarity between their quotes and mine, I think it is very possible (I won’t go so far as to say probable) that their quote of the CHOP document is simply copied and pasted from mine. And that raises some question in my mind whether Olmsted (and Blaxill) have ever gone to the trouble of reading their “source” with any care. Then there is the remark that follows, which looks to me very much like what I suggested in the first draft of “Mythical Millions”. My correspondence with Offit on the matter convinced me otherwise, which was why I replaced that document.

“But if Offit shared the Royalty Pharma proceeds with Plotkin and Clark, then Offit would also stand to receive a share of any Rotateq® related payments made to Wistar, payments we did not attribute to him previously and that he has not disclosed.”

This is a reasonable conclusion, but an unacceptable argument. The reason Plotkin and Clark were eligible for payment from the CHOP share is that they both were present or former employees of the hospital. For the same argument to apply to Offit and the Wistar payment, it must be shown that he is or was a Wistar employee. As it happens, he is (a fact which I was aware of back in August). But, Olmsted has not gone to the minimal effort of establishing this fact, nor has he shown that he understands why he was in error in the first place.

“His claim of a 10% inventor distribution for Rotateq® is supported by a document we received from a critic of our analysis: a January 2007 newsletter from CHOP call `Bench to Bedside.’”

I will add a significant detail: I mentioned this document in the first draft of “Mythical Millions”, and gave Blaxill notice of what I intended to publish on August 10.

“Offit has now publicly disclosed both of these terms (a disclosure that Age of Autism Contributing Editor Jake Crosby confirmed in direct correspondence with Offit).”

This immediately reminded me of one of Crosby’s periodic visits to Left Brain/Right Brain. On September 14, he left this confrontational “comment”: “When did Paul Offit receive the royalty payments for the Rotavirus vaccine? It was added to the schedule in February 2006, but the new patent code went into regulation in November 2006. If Paul Offit’s vaccine was added to the schedule in early 2006, but received payment in late 2006 (either November or December), or beyond, then he would have received inventor’s share of the money according to the current patent policies of CHOP.

Also, how would Drs. Clark and Plotkin receive CHOP inventor’s share of the vaccine when they already received some through Wistar and no longer work at the hospital, and only Paul Offit does? That does not seem to make sense.” He did not offer any further comments or questions in response to detailed explanations. I mention this because it is indicative of how slow and recalcitrant AoA has been in retracting their original article: Nearly a month after I posted Offit’s statement, it appears that even a major member of the AoA staff was either wholly unaware of the correction or not yet fully informed of the extent to which the original story had been shown to be in error.

But even this revised lump sum estimate likely understates Offit’s total return from the CHOP royalty streams. According to the announced payment terms, Royalty Pharma only purchased the rights to CHOP’s royalty stream “from and after October 1, 2007.” Based on its quarterly financial statements, Merck reported Rotateq ® sales of $537 million before that date. If CHOP retained the royalty rights to Merck revenues before that date, then Offit could have received royalty payments directly from CHOP based on Merck’s early Rotateq® revenues in addition to the lump sum payment he received based on the Royalty Pharma transaction…

This is an odd tangent. If Olmsted thinks that Offit received a significant amount of money from this transaction, why doesn’t he give an amount? For that matter, why doesn’t he mention this after providing some suggestions as to calculate royalties? This immediately raised my suspicion that, as in the inclusion of $55M in the original piece (see “18/3=29”), Olmsted has put forward a claim he knows is improbable at best, to lead readers to draw erroneous conclusions.

As it happens, Olmsted suggests later (see below) that the royalties to the hospital(s) would have been 2.5%. If that is applied here, the hospital would have received $13.5M. Based on the complex policy in place in ca. 2000, the inventor’s share would be $200,000 for the first $500K, $675,000 up to $5M, and $850,000 for the rest, for a total of $1.725M, or $575K per inventor. Or, so it would seem. For 2006, matters seem straightforward. Olmsted reports that there were $163M in sales for Rotateq before the end of the year, which comes out as $4M for the hospital and $242K for each inventor. But what about 2007, which is when the greater part of the royalty would come into play? That would depend on the terms on which payments were made. If CHOP had received a royalty payment for each quarter, then the institution would have pocketed the royalties up to October. But if the royalty was an annual payment, it appears quite possible that, in making the sale, CHOP forfeited all royalties for 2007. Needless to say, I consider the second possibility more likely.

“Wistar’s immediate receipt of $45 million was subject to the same inventor distribution requirements as the CHOP transaction. So just as Offit received a share of the CHOP inventor distribution, the Wistar deal created an occasion for a second lump-sum payment. According to the “Guidelines for Wistar inventors”. Offit would have received 5% of the Paul Capital proceeds, or $2.25 million … In his recent disclosures regarding his CHOP payment of $6 million, Offit has consistently neglected to mention that he received another seven-figure payment from Wistar a few months before. Adding these payments together gives Offit a total of $8.4 million from lump sum payments alone.”

I mention this to point out that (contrary to what Olmsted seems to believe) none of this is news to me. As already mentioned, I was aware of Offit’s employment at Wistar around the time I contacted him for comment on his CHOP share. If he didn’t tell me his income from other sources, I will grant that, given the opportunity, I chose not to ask. Also, to the best of my recollection ,I had at that point taken a look at the Wistar policies, and come up with a figure in the neighborhood of of $7M for the inventor’s share. If I had chosen, I could have suggested the same figure Olmsted is presenting now. I had little reason to go to the trouble. For one thing, Olmsted had placed the focus on the CHOP share. For another, he had so preposterously inflated Offit’s income that two million or so either way would make no difference in judging the the credibility of his “reporting”. As far as I’m concerned, it still doesn’t.

“(I)n order for Paul Capital to be willing to pay $45 million for a 13 year royalty stream between 2006 and 2019, we calculate that Wistar’s royalties on the first $300 million in Rotateq® revenues would need to fall somewhere between $6-9 million per year, depending on the discount rate Paul Capital applied to the future royalties… This calculation would mean that Wistar has a royalty rate somewhere in the 2-3% range. For simplicity’s sake, we have assumed that Wistar’s actual royalty is 2.5%, which after adding an equal amount for the CHOP license brings Merck’s total royalty for its Rotateq® patent license to 5%.”

This whole passage is far from convincing. It is clear that what is “calculated” is based on a series of assumptions, of which the first- “for Paul Capital to be willing to pay $45 million for a 13 year royalty stream… Wistar’s royalties on the first $300 million in Rotateq® revenues would need to fall somewhere between $6-9 million per year”- is clearly the most questionable. How does one know what businessmen would be “willing to pay”, unless either a) one is telepathic or b) the businessman can see the future? It’s not at all clear to me how Olmsted came up with his figure.

Rather than try to sort out his calculations (in which he has given me no reason for confidence), I will do my own math. $45 million divided by 13 is $3.46M, or 1.15% of $300 million. It can be assumed on this basis that royalties were more than 1.15% , because Paul Capital would have had no chance of making a profit otherwise. But, if it were that much more, it is more likely Wistar would not have sold. So, I will settle for 2%, which would have given Paul Capital the chance of almost double return and allowed them to break even by the time sales hit the $150M mark. A 5% inventor’s share (1/3 of 15%) would come out at 0.1% of gross minus $300M.

In this scenario, in 2008, when gross Rotateq sales reached $665M, Offit and associates would have received $365,000. This doesn’t come close to justifying Olmsted’s figures. As noted, his claim at the start was that Offit has made $10M from Rotateq, which since he estimates lump sums to be $8.4M would mean $1.6 million, over 3 years, or on average $533,333 per year. My calculation for 2008 provides only 68%, and that is so far the peak for Rotateq sales. Moving up the percentage is little help: At 2.5%,, the royalties come out at $456,000 for 2008, which is 70K short. Even at 3%, I come up with $547,500 to Offit, which is only barely more than what Olmsted requires. So how is it that Olmsted has arrived at an “average” of $533K per year, when applying the royalties percentage he claims to have used to the highest sales on record falls short by about 14%?

That brings us to the final sentence of the passage, which I can only regard as an outright lie. Now, Olmstead previously suggests that Offit received royalties on Rotateq sales through ca. Q3 2007, on grounds which seem plausible. But that is not what Olmstead appears to be saying. Instead, he gives every indication of saying (briefly and offhandedly) that Offit is receiving ongoing income from both Wistar and CHOP. There is absolutely no chance that this is true, or even what Olmstead believes to be true. He repeatedly states, in this very article, that any current income to Offit can only come from Wistar. That he seems explicitly to say otherwise here cannot be excused as mere “error”. Witness the next item…

“(W)e estimate that Offit receives an eighth of a cent (or .125%) for every dollar of Merck’s Rotateq® revenue above $300 million If Rotateq® performs well, it can generate a large annual income for Offit: a relationship we have illustrated graphically in Figure 1.”

Year Q1 Q2 Q3 Q4 Total/300 Royalty
2007 85 119 171 149 224 $280,000
2008 190 178 134 162 364 $455,000
2009 134 126 127 120* 207 $258,750
Total $993,000

*Estimate by the author, minimum

It is clear from the chart that Olmsted’s “estimate” has no basis even in his own data. Even the 2008 “spike” falls $78K short of the $533K per year necessary to add up to the $1.6M that Olmsted implies. The sum of them all is only 62% of that figure. (Even granting his doubtful claim of CHOP royalty payments through Q3 2007 won’t quite get to $1.6M without rounding.) The only readily apparent means by which Olmsted could have come up with that, based on ongoing royalties alone, is by assuming two sources of such income, ie by adding CHOP payments which he has admitted do not exist. In summary, it is again proved absolutely impossible that Olmstead could have arrived at in the methods he describes. Furthermore, if he did not necessarily lie in producing the first story, it cannot be doubted that he is doing so in this one. I will grant him the benefit of one doubt: It is possible that the untenable figures precede the apparent “miscalculations”, and that the former were foisted onto him by another, possibly with initials of H, B and J, not necessarily in that order.

That brings us to the graph, which can be traced to what appears to be a protected site created by Generation Rescue, and kept disappearing or getting messed up when I tried to include it here. To the extent that I am able to analyze it (a task which required magnification, a printout and a ruler), I must admit its figures are less objectionable than Olmsted’s. At the least, it is clear enough (when the graph is examined closely enough!) that Offit’s annual royalty would not reach or exceed $500K until around $750M in gross sales. (By Olmsted’s math, the royalties on $750M would be $562,500.) But that is more than nullified by the extravagant scale assumed. Based on available fiscal data, it can be predicted reasonably that Rotateq sales will remain stable at around $500M per year. But the anonymous graph maker saw fit to illustrate Offit’s royalties on sales up to $3.5 billion.

After this, the only remaining question is why, after four months of denial, silence, censorship and the occasional insult, AoA is finally making a “correction” now. It certainly is not to convince me or those in the communities of which I am a part. If they cared about what we had to say, they would have issued corrections a long time ago. The only intelligible interpretation is that this is a “rear guard” action, and a sign that even loyal AoA members, perhaps even some of their leaders, are growing tired of this “story” and/or “anti-Offit” tactics in general. I suspect that the role of Olmsted in particular has been to stall, waiting either for criticism to die down or to perfect exactly what he has finally done: create a story which would admit his previous error(s) while allowing himself to “save face” before his loyal followers. In that event, I have only one thing left to say to Olmsted: This is the best you could do??!
And the Possum just says, “HAH!”

David N. Brown is a semipro author, diagnosed with Asperger’s Syndrome as an adult. Previous works include the novels The Worlds of Naughtenny Moore, Walking Dead and Aliens Vs Exotroopers, and the nonfiction ebook The Urban Legend of Vaccine-Caused Autism. This and other articles related to autism are available free of charge at evilpossum.weebly.com

Kim Peek has passed on

22 Dec

I was literally just about to write a post referencing Kim Peek when I found this story on the news: Father says Kim Peek, Utah man who inspired Dustin Hoffman’s ‘Rain Man’ character, dies at 58.

Kim Peek was a savant. He was the inspiration for the character Dustin Hoffman played in the movie “Rain Man”. This movie was and likely still is what many outside the autism communities think of when the hear the word “autism”. Interestingly, Mr. Peek was not autistic as such, but had a condition called “Agenesis of the Corpus Callosum” or ACC.

I tried to contact Mr. Peek earlier in the year for an interview on LBRB.

Here are some videos about the man.

I’ve been thinking a lot about Mr. Peek. I was actually worried that Mr. Peek’s father may have passed on. Kim Peek was very dependent on his father.

I wish Fran Peek well in getting past the loss of a child he obviously loved and who brought him joy. Episode 5 in the above series shows some of the relationship between father and son.

“My father and I share the same shadow” –Kim Peek

Tom Insel lets himself down

21 Dec

I was saddened to see a recent interview given by Tom Insel to the Age of Autism blog. Maybe he’s not a regular reader of that blog where his fellow scientst Paul Offit is regularly castigated in such personal and violent ways. Or maybe he is and doesn;t care. However the impression I get from Insel is that he’s a weak man who will say whatever it is the person he’s talking to wants to hear.

He certainly did this during his interview with David with statements as bizarre as:

As far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected…

In fact the oonly really accurate statement I found during David’s published highlights with Insel was Insel’s statement that:

I think I am arguing, probably, against the wave of the people that are in this field…

which is most definitely the truth. I can’t think of an autism epidemiology expert that has come out and said that there is definitely or definitely not an ‘epidemic’ of autism. And why? Because the science doesn’t exist.

Insel also seems to be infering that most people in the field believe there is one entity called ‘autism’ which is most certainly not true. A simple comparison between Rhett syndrome and all other known forms of autism would clearly show more than one type of autism. Insel doesn;t name names but I am at a loss to think of anyone else in the field who considers autism to be one entity.

He goes on to say that he finds it ‘believable’ that children can develop autism in the context of severe gut problems. Well, good for him. But ‘believable’ is not the same thing as ‘established’ or even ‘hypothetical’. Its one persons opinion.

All in all, this interview added little (if anything) to what we know about autism. But it did allow us to see Tom Insel in a certain light. Not a very good once in my opinion.

So, what is autism, culturally?

20 Dec

To some autism is a disability. To some autism is a difference. To most, including me, I’m betting its both. Its not always bad, its not always good. It leaves some people virtually unable to communicate in an NT world and it increases other peoples intellectual ability to the point of near genius.

Some see it as a gift, and others as a curse. Some, including me, see it as neither but as simply something that is. Like the colour brown, or the shape of a circle it exists above others perceptions and therefore is amoral as oppose to moral or immoral.

Some see it as something that needs research into its origins. Others see it as something that needs research into how it can be stopped. Some, including me, see it as something that needs research into how best we support autistic people as they become – and continue to be – adults. How we help them with housing, employment, education etc.

Some people would be shocked that others don’t see research into a cure as the number one priority – or even as a priority at all – and others would be shocked that others don’t seem able to see autism as anything but a state that medically affects children.

As we enter the last year of the first decade of the new millenium, the question needs to be asked: where do we go from here?

CDC report 1 in 110 kids are identified autistic

19 Dec

You’ve probably already heard–the CDC’s estimate of the autism rate was announced as 1% today. This was published in an MMWR came out today, with the new CDC prevalence estimate of 1 in 110. I made some notes on the conference call, but I thought it worthwhile to make a few comments on the document itself.

This is the third in the autism prevalence MMWR’s. The first was
Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2000

and

Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002

This new one is titled

Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, United States, 2006

In each they estimate the prevalence for 8 year olds. So, the 2000 study was on children born in 1992 and the 2002 study was on children born in 1994. They found prevalences of 1 in 166 (200) and 1 in 150 (2002), respectively.

The new prevalence is 1 in 110 for 2006 (8 year old children born in 1998). This is a big jump, no doubt. It is worth taking very seriously. Unfortunately, it isn’t as simple as saying, “the number of autistic children has increased”.

As the authors note in the introduction:

Since the early 1990s, the number of persons receiving services for ASDs has increased substantially. However, identifying children for services for autism might not be equivalent to using consistent diagnostic standards to identify persons in the population because services within communities are not available uniformly to all persons with ASDs. For this reason, studies that rely exclusively on single-source administrative datasets (e.g., disability service records or annual reports of special education counts) most likely underestimate ASD prevalence and might not adequately capture changes in the ASD population over time

Most of the states reporting in the ADDM use more than a single source. Most use medical and educational records. Those that use a single source (e.g. Florida) show lower prevalence estimates.

Let’s get back to that 1% estimate. This is a big jump in the prevalence–with the previous prevalence being 1 in 150 (about 0.67%). Yes, it should be taken seriously, but at the same time 1% is not a surprising number. The authors list 5 studies that show a prevalence >1%, using other methods.

Note that this is for the 1998 birth cohort, children born 4 years after those studied in the previous MMWR. I bring this up because the “buzz” before the MMWR was discussing this as the 1996 cohort. The studies are not spaced out evenly in time–2000, 2002, 2006.

Methodology
The methodology is through a record screen, not through direct observation of children:

Children aged 8 years with a notation of an ASD or descriptions consistent with an ASD were identified through screening and abstraction of existing health and education records containing professional assessments of the child’s developmental progress at health-care or education facilities.

If on review of the records, the child is deemed to meet the DSM-IV criteria for autism, he/she is counted. This is a good way to get an estimate, but there is a lot of room for children to fall through the cracks, in my opinion. As such, it is and has always been, an underestimate. In some cases, it is probably a very large underestimate. As will be shown below, there is a big variation by state–a factor of 3. I don’t think anyone really believes that the autism prevalence in Florida, or the prevalence amongst Hispanics is much lower than in other states or other ethnicities.

It is interesting to note that the ADDM network does find a significant number of children whom they (the ADDM) categorize as autistic even though they haven’t been given that diagnosis before. About 23% of the autisistics counted in the 1% value were not identified before the ADDM did their review.

That’s worth repeating–about 23% of 8 year olds identified as autistic were mislabeled as non-autistic by their schools, parents and doctors. That’s an interesting fact for those who claim that autism is easily identified.

The CDC study is not capable of explaining whether part of the increase represents a “real” increase in the number of autistic kids. It certainly can’t go into whether or not any specific proposed cause is valid. However, one can use the data to test hypotheses. This type of study just isn’t capable of making claims about causation.

States Reporting to the ADDM

This new study covers children born in 1994 living in 11 states:
Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina, and Wisconsin.

Note that this is different from the last MMWR, which looked at kids born 2 years earlier (1996) and included sites in:
Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia , and Wisconsin.

The new study added Florida, but took out Arkansas, New Jersey, Utah and West Virginia. These changes do make it more difficult to compare the prevalence data. They do not explain the increase. By that I mean, it isn’t as though the low prevalence states were removed from the previous MMWR study and high prevalence states were added.

I would have been very interested what happened to the prevalence in New Jersey. The last two MMWRs had New Jersey at about 1%. A good comparison would be if that state had the same autism prevalence or a higher value.

Prevalence by state

Data in Table 2 from the MMWR. Data from 11 states were reported. The prevalence ranged from 4.2 (Florida) to 12.1 per 1,000 (Missouri and Arizona). That’s a big spread, a factor of 3. The highest prevalence was for males in Missouri–19.1 per 1,000 (1.9%, or 1 in 52).

There was some variation in the male:female ratio, from 3.2 (Alabama) to 7.6 (Florida). Again, this shows that there is a big variation by state in how autistics are identified.

Variation by ethnicity.

There is a large difference in the prevalence by ethnicity. This also varies by state. For example, there is a 9.4 White-to-Hispanic ratio in Alabama, but the same ratio is only 0.7 in Florida. In general, Whites are identified more often than either Hispanic or African Americans.

We have a lot of work to do in making sure minorities are correctly identified and getting appropriate services and supports.

Earlier age of identification.

The median age of autism diagnosis is about 4.5 years. This is a big jump down from the 2002 data, which had a median of 5 years. That is a good thing.

This is worth a couple of comments. First, there is still room for improvement. Most of the children had development concerns noted in their records before age 2. The obvious question is whether these children could have been identified sooner. This was one comment stressed by the CDC in the conference call.

It is also worth noting that autism isn’t “obvious” or “easy” to identify autistics. 4.5 years old is the median age.

It is also worth noting that the big jump down in median age of identification is a very clear indicator that, yes, people are getting better at identifying and diagnosing autistics.

The range of age of identification is as low as 2 months (!) to as high as 106 months. The low end is pretty remarkable. I don’t think there are any tests qualified for such young children. At the high end, that is nearly 9 years old. Again, this goes to the idea that autism is not obvious.

One complaint that is always used in these discussions is “what, are you saying that no one noticed these kids?”. No. They likely had other diagnoses or that some concerns were noted about development for them.

Number of kids receiving special education services.

Table 3 of the report is quite interesting. They show for six states what fraction of identified autistic kids are getting special education, and under what primary label.

In Colorado, 76% of autistic students are in special education, while in Arizona it is 96%. Is there really such a big difference in the needs of these kids from state to state?

Colorado has only 34% of the autistic students under the primary category of autism. Compare that to Maryland with 76%. Again, it is pretty clear that there is a lot of variation in how special education services are granted by state.

Cognitive Functioning

From the MMWR:

Data on cognitive functioning are reported for sites having IQ test scores available on at least 70% of children who met the ASD case definition. The proportion of children with ASDs who had test scores indicating cognitive impairment (IQ ?70) ranged from 29.3% in Colorado to 51.2% in South Carolina (average: 41%)

I find this information rather interesting. Most of the children with IQ data were not cognitively impaired.

2004 Prevalence data.

There was also a small appendix released today, with information on 2004 prevalence data (note that the study noted above is for 2006). Those data show a prevalence of 8 in 1,000, or 1 in 125. This is a “smaller scale effort”

It is interesting to put the data from the various studies into a timeline:

2000 originally 1 in 166, revised to 1 in 150 (6.7 per 1,000) (1992 cohort)
2002 1 in 152 (6.6 per 1,000) (1994 cohort)
2004 1 in 125 (8.0 per 1,000) (1996 cohort)
2006 1 in 110 (9.0 per 1,000) (1998 cohort)

If you recall, David Kirby claimed the new CDC data would support his hypothesis that the Hepatitis B vaccine caused an upsurge. Mr. Kirby mistakenly assumed that the 1% figure would be for the 1996 birth cohort. Mr Kirby then correlated the jump from 1 in 150 to 1 in 100 with the uptake of HepB vaccination in that birth cohort. He stated (incorrectly, we now know):

But according to the CDC’s National Immunization Survey (which also includes parental telephone interviews), only 8% of infant children received the Hep B vaccine in 1992, when that birth cohort showed an ASD rate of 67-per-10,000.

By 1994, the number of children receiving Hep B vaccine had reached just 27% — and the cohort showed a similar ASD rate.

But the Hep B coverage rate had risen to 82% by 1996, when that cohort’s ASD rate rose to around 100-per-10,000.

So, there was a smaller jump that correlates with the uptake in HepB in the 1994 cohort–the rate increased from 0.66% (1994) to 0.80% (1996). Then, two years later, there is a similar jump, from 0.80% (1996) to 0.90%. But, this time without the big increase in HepB vaccination.

Not so dramatic a story with the real data. Just a constant rise.

Final words

I hope this highlights some of the information in the study. I wish I had the time to spend to make this summary a bit easier of a read. But, there are other posts to write. Like one talking about Autism Speaks and the way they are capitalizing on the new prevalence numbers with a very deceptive graph.

CDC conference call: 1% autism prevalence.

18 Dec

The CDC conference call was today. This call was about the new MMWR (Morbidity and Mortality Weekly Reports) that is due out. (The report is here, with an appendix here).

Dr. Catherine Rice, lead author was there. She gave the intro.

Report is released today. “Significant public health issue”. We need a coordinated and strong response to improve the lives of people with ASD.

2006–identified prevalence to be about 1% of 8 year olds. Representing about 8% of 8 year olds. 4.2 to 12.1 per 1000, average of 9.0 per 1000 (1 in 80 to 1 in 240, average on in 110)

The ADDM network collects data from multiple sites. All showed increases in identified ASD prevalence. The increases ranged from 27% to 95%, with an average of 57%

Identified ASD prevalence increased across all categories. Increases 55% for White, 90% for Hispanic (missed African American)

The autism prevalence is 4-5 times higher for boys. Prevalence numbers are 1 in 70 boys, 1 in 315 girls (average). The increases were 60% for boys, 48% for girls.

There were between 13-35% of the children studied who had a report of regression or loss of skills by age 2.

For most children, concerns were noted in the records were noted before age 2, but average identification age is about 4.5 years of age.

No single factor explains increase. Better detection is a factor (girls, Hispanics, people without cognitive impairment were given as examples of improved detection). True increase can not be ruled out.

CDC has new studies (such as SEED) to look into causes of autism. CDC is also represented on the IACC.

Some of the increase is due to better record keeping. One question from WebMD was about a possible true increase. CDC responded about the various factors involved, but a true increase can not be ruled out.

Boston Globe: (1) why are there broad “incidence” rates across sites (2) what about this study in terms of vaccinations.

Rage is 4.2 to 12.1 per 1,000. 7 sites were much more closely grouped around 10 per 1,000 (1%). There is a variation in the types of records available. The CDC representative states the low numbers are likely a low estimate.

Since autism is a behaviorally diagnosed condition, there will be variation in prevalence by region.

This study is not designed to look at risk factors, including vaccine. The children in this study were born in 1998, so these children were vaccinated with thimerosal.

NY Times: Range of spectrum. How well does this study catch the more “mild” end of the spectrum like PDD-NOS and Aspergers.

This went by fast, but it sounded like the CDC said that autism and PDD-NOS were more represented than Asperger syndrome.

CDC: The researchers do not actually test the children, but work on a review of existing records.

Pediatric news: What is the take home message for pediatricians?

CDC: Since there was usually an indication of delay before the age of 2, but identification wasn’t made until (on average) 4.5, pediatricians should be proactive in referring children for further evaluation.

In response to one question on intellectual disability: there is an overlap between autism and intellectual disability. Old stats showed 75% of autistics had Intellectual disability. Now it is more like 41%. This points to the idea that either the nature of autism is changing or that identification methods are changing, catching more autistics without intellectual disability.

CNN question–how much did the average age of diagnosis change?

CDC: 5 months. Children were identified on average 5 months sooner in these data than in the previous study.

Note: I made significant updates to this post since it was first published.

Is CDC to announce 1 in 100 autism rate?

18 Dec

And, if so, is SafeMinds trying to play games with Google news to get their story on top?

What happens when you are the first to break a big news story, at least in terms of Google News? Well, quite often your story gets to be the top story.

On Wednesday, SafeMinds put a piece on the Age of Autism Blog CDC Study Expected to Announce 1 in 100 Autism Rate—A Startling 50% Jump in Just Two Years. Evidence Points to an Environmental Trigger. Then, on Thursday, basically the same piece reappeared as CDC Brings Bad Tidings: 40,000 Children Diagnosed With Autism In This Year Alone. They open with:

Atlanta, GA – A study to be released Friday by the Autism and Developmental Disabilities Monitoring (ADDM) Network of the Centers for Disease Control (CDC) is expected to report that autism prevalence has reached the epidemic rate of 1 in 100 children.

Usually when a new study comes out, journals or the CDC will release some information to the press on the condition that they respect the “embargo”. That is, everyone is supposed to wait until the same time before going public with the information.

There are advantages to not playing by the rules. When you get your story out first, especially on a big story, you can try to influence other stories and you can ride the top of the wave of press coverage.

Take a look at Google News for a big story and often there is a “lead” or top story. No one wants to be burried in the mass of stories. Get your story out first, and, hey, maybe you will be the top story.

That would be a big public relations coup for SafeMinds. At the same time, we have to ask: if SafeMinds is correct, are they breaking an embargo? The release of information about a recent Pediatrics study claiming a 1% autism prevalence caused some bad press for the autism community (also here and here).

Let’s watch. Will SafeMinds put out yet another post Friday morning, just in case? Will they succeed in getting a prominent spot for their pieces? Will journalists covering the story contact SafeMinds or use their material for stories?

The CDC autism prevalence estimates are made via MMWR’s (Morbidity and Mortality Weekly Reports). The previous report was from 2007, using data collected in 2002, with the 1 in 150 prevalence estimate that has been commonly quoted.

If you recall, the existence of the upcoming MMWR was leaked a few months ago. Lee Grossman, president of the Autism Society of America, somehow found out and talked publicly, and David Kirby blogged it. Of course, Mr. Kirby found a way (or was told a way) to include this as evidence of vaccines causing autism. The argument being that the Hepatitis B vaccine was given to those kids. It didn’t matter that the other dataset he was discussing in that same post, from the National Children’s Health Survey, didn’t support the idea at all. SafeMinds seems to be making the same arguments in their blog pieces as well.

If SafeMinds is correct and the announcement comes out Friday, expect updates on the CDC autism data page, and the CDC autism page. But, hey, expect about 5,000 news articles too.

Autistic Self Advocacy Network leader Ari Ne’eman has been nominated by President Barack Obama for a position on the National Council on Disability

17 Dec

From a White House press release yesterday:

President Obama Announces More Key Administration Posts, 12/16/09

* Marie Collins Johns, Deputy Administrator, Small Business Administration
* Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
* Jonathan M. Young, Chair, National Council on Disability
* Carol Jean Reynolds, Member, National Council on Disability
* Fernando Torres-Gil, Member, National Council on Disability
* Chester Alonzo Finn, Member, National Council on Disability
* Gary Blumenthal, Member, National Council on Disability
* Sara Gelser, Member, National Council on Disability
* Ari Ne’eman, Member, National Council on Disability
* Dongwoo Joseph “Joe” Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

edit to add, from the press release:

Ari Ne’eman, Nominee for Member, National Council on Disability
Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

An example of how people earn the title “denialist”

16 Dec

Denialist. One who denies. It is a phrase that gets thrown around a lot on the internet. You don’t agree with me? Well, you must be a denialist. The term has risen in prominence lately with Michael Specter’s recent book, “Denialism, How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives” One of his prime examples is the anti-vaccine movement, so this book has been discussed on a number of autism blogs (including this one).

Denial–here are definitions from dictionary.com

1. an assertion that something said, believed, alleged, etc., is false: Despite his denials, we knew he had taken the purse. The politician issued a denial of his opponent’s charges.
2. refusal to believe a doctrine, theory, or the like.
3. disbelief in the existence or reality of a thing.
4. the refusal to satisfy a claim, request, desire, etc., or the refusal of a person making it.
5. refusal to recognize or acknowledge; a disowning or disavowal: the traitor’s denial of his country; Peter’s denial of Christ.
6. Law. refusal to acknowledge the validity of a claim, suit, or the like; a plea that denies allegations of fact in an adversary’s plea: Although she sued for libel, he entered a general denial.
7. sacrifice of one’s own wants or needs; self-denial.
8. Psychology. an unconscious defense mechanism used to reduce anxiety by denying thoughts, feelings, or facts that are consciously intolerable.

Many people “deny” that vaccines work. Many people “deny” that the diseases vaccines prevent are dangerous. People who do so are, in my book, denialists.

Case in point, a recent blog post by Kim Stagliano of the Age of Autism blog: An Autism Mom Goes Back to Christmas 1962. In it, she presents a doll from 1962. A doll with a changeable face, and one face shows the baby doll with measles. The message of the blog post is clear: measles wasn’t so bad. Ms. Stagliano writes:

Yes, in 1962, measles were a common childhood illness. And little girls played with dollies that had the measles, and made them all better. So did doctors for children who got the measles.

Well, yes. Most of the time children got better.

Let’s check what people wrote about measles in the early 1960’s, shall we? From Time Magazine, 1961 (with emphasis added by me).

When famed Harvard Nobel Laureate John Franklin Enders announced at a Manhattan meeting three years ago that he had isolated measles virus, his fellow virologists stood up and cheered. It would not be long, they hoped, before a vaccine could be developed to wipe out a disease that sends one child in 4,000 to institutions for the feebleminded. But the first live virus vaccine developed by Enders left much to be desired; four of five children got severe fevers, roughly half developed a rash. Last week, after much toil by Enders and others, a group of Pennsylvania physicians and virologists announced that they had successfully tested a measles vaccination technique. Children are first inoculated with Enders vaccine, which gives nearly 100% protection. Then, almost immediately, they are injected in the same arm with gamma globulin, which holds undesirable side effects, such as fever and rash, to a minimum. The Public Health Service still must approve the new measles technique, establish manufacturing standards. If all goes well, a vaccine will be on the market next year, just as measles heads toward its next cyclical peak.

Yes, virologists cheered, 1 in 4,000 children were sent to institutions.

Life Magazine, in 1963, discussed the new vaccines for Measles.

Though often joked about, this commonplace disease kills about 400 Americans each year–twice the number that polio now kills. Several thousand cases each year develop encephalitis, which can damage the brain.

The Age of Autism, where Ms. Stagliano blogs, was quite upset by Mr. Specter and his book for singling out anti-vaccine groups as denialists. My suggestion: if you don’t want to be labeled denialist, don’t be a denialist.

Gertrude “Trudy” Steuernagel in her own words.

15 Dec

Gertrude “Trudy” Steuernagel was the mother of Sky Walker. In case the story is unknown to you, it is one of tragedy. It appears that Sky Walker beat his mother, killing her. Sky Walker is autistic and quite disabled. He is also aggressive and quite strong.

He also loves his mother, and his mother loved him very deeply.

It is an important story within the autism community. One which is difficult for me to write about. This is especially so since many people seem to want to speak for Prof. Steuernage and/or her son and I don’t know how to write this without doing the same. So, with apologies to the Kent State newspaper, from where I lifted these articles in their entirety, I would like to present her own words. Should the request, will pull this post.

Here is a letter she sent to the Kent State newspaper about her son, Sky and his perseverations:

My son’s trail of sparkles

My son was diagnosed with autism shortly before his third birthday. I wasn’t surprised and had suspected autism. That said, I was unprepared for the depth and breadth of the challenges autism would present to us. Sky has classical autism and is on the severe end of the spectrum.

His verbal abilities are limited. I have never had a conversation with my son. He does not ride a bike. He does not tie his shoes. I say “does not” because with autism it is impossible to tell if it is “cannot” or “will not” or some combination. He will never drive a car or live independently. He will never be a husband or a father. The first questions I asked when I heard his diagnosis were “will he learn to read?” and “will he get married?” In that order. Autism helps you clarify what matters to you.

Sky had difficulties in preschool with scissors. He did not have the fine motor coordination or motor planning skills he needed to cut construction paper pumpkins. I worked with him with limited success and eventually, as I always do, arrived at my safe place, my “what difference does it make” place. The world, I decided, could make do with one less construction paper pumpkin. I forgot about scissors and the challenges they posed for Sky.

Two years later I went to his first kindergarten parent teacher conference and heard “Sky is quite good at cutting but has some difficulties with complex patterns.” Somehow, he had made it past learning how to place the scissors on his fingers, past how to coordinate paper in one hand in scissors in the other, past the conundrum of whether to cut inside or outside the line on the paper. Sky could, in teacher speak, “scissor.” Life went on and I thought no more of scissors.

Today Sky is 16 and, in addition to autism, he now carries the diagnosis of obsessive compulsive disorder. He can read and he is not married. Sky has many rituals, one of which is cutting paper into tiny pieces. He particularly likes to cut cellophane fruit bar wrappers into confetti sized pieces. The fruit bar must be strawberry. My nightly ritual is to get down on my hands and knees and pick the sticky confetti off the hardwood floors in the kitchen and family room. I always miss pieces and these are tracked on the soles of our feet or shoes throughout the house.

One night I was frustrated and angry with the universe. Why, I thought, does he do this? He doesn’t even eat the fruit bar. Then I thought back to the preschool days, the days when Sky did not “scissor.” I started to smile. The smile turned into a laugh, the laugh into a guffaw. My son the cutup had once again proven to be my best teacher. Try your best; do what you can; the universe will come to you.

I still don’t enjoy picking minuscule pieces of sticky cellophane from the kitchen floor, but the pieces that get tracked through the house? I try to appreciate the sparkle they bring to aged carpet, the pattern they make on worn tiles. I see those sticky cellophane bits as a trail my son leaves for me as we navigate this strange world of autism, because we do navigate it together and always will. Sometimes I lead and sometimes Sky leads and sometimes we get it right. Like we did this time. Sky can use scissors and use them well. He mastered that skill and he will master others.

Neither Sky nor I will ever win the Nobel Peace Prize. Neither of us will write the great American novel. We will, however, make each other laugh. We’ll challenge each other to be better people, to be a better mother and a better son. He is my dance partner and I his. Sometimes we step on each other’s toes and sometimes we navigate with great grace. I’ve learned when to lead and when to follow. I know Sky will continue to leave a trail for me, a trail of sparkles.

Here is an article she wrote about how Kent State’s hiring practices discriminated against the disabled.

Dear editor,

Stephen Hawking is not qualified to be hired as the Dean of our Honors College.

Why? According to the requirements listed for the position, advertised on the university’s Web site, the physical requirements for the position are as follows:

“Light work-exerting up to 20 pounds of force occasionally, and/or up to 10 pounds of force frequently, and/or negligible amount of force constantly to move objects. Typically requires sitting, walking, standing, bending, keying, talking, hearing, seeing and repetitive motions.”

Hawking, the eminent physicist, has ALS, more commonly referred to as Lou Gehrigs disease, and is confined to a wheelchair with little if any control of his motor functions. He uses an artificial synthesizer to speak. He cannot sit, walk, stand, bend, key, or talk without assistance. With Hawking, however, the deficits are minimal compared to what he would bring to the job including, but not limited to, his incredible intellect and his international stature.

Truthfully, I don’t believe Hawking has any interest in becoming dean of our Honors College. Our loss. What I do believe, however, is that the physical requirements listed for this position are reflective of a cultural bias against individuals with disabilities.

We look at what is missing, not at what an individual with challenges might bring to a position. We are all challenged in some way.

Isn’t it time we stop thinking that a person who cannot walk cannot be a dean? That a person who cannot “key” cannot lead our Honors College? Ironically, my son, whose autism guarantees he does more than enough repetitive motions to qualify him for this aspect of the position, would not receive adequate health coverage because KSU contains to retain the autism waiver in its health plan. Darned if you do; darned if you don’t.

Trudy Steuernagel
Political science professor

Another about what a conversation with her son would be like.

Just a conversation
3/28/2008

What I wouldn’t give for a conversation with my son. I don’t mean “the” conversation as in the birds and bees talk, but a conversation. My son has autism and he and I have never had a conversation. I keep waiting for that day. In the early days, right after his diagnosis, I was sure it would happen. Now, as Sky has celebrated his 17th birthday, I’m not so sure that will happen. So now I plan, just in case.

I think about what might be said in that conversation. What would I want to know first? I want to know if he is happy. Then I want to know what I could do to help him. When he gets so frustrated he strikes out, is there anything I could do? Anything I could say? I’m curious, so I would ask a lot of these kinds of questions. Why do you like “The Price is Right” so much? What is it you like about Dr. Seuss? How did you discover YouTube? Why will you wear only blue shirts? Why do you shred paper? Why do you watch the ABC “Nightly News” and never CBS or NBC? Why do you like Bill Clinton so much? I’d like to know if he thinks I’m funny.

I hope he has some questions for me. I think he’d ask why I don’t make homemade fettucini alfredo more often than I do. I think he would ask why he only goes to Disney World once or twice a year, and why we can’t live in Small World. I know he doesn’t need to ask if I love him. When we’ve had a bad day, Sky says “swap me.” I say, “I’ll never swap you. I’m going to keep you forever and ever.” He says “swap me” again and again and each time I reply with my forever commitment. It soothes and reassures both of us.

Life with Sky these past few years has been very isolating for the two of us. We can’t go out and do the things we used to like to do because Sky gets so overwhelmed. Much of our time, we’re here in the house. Sky has taught me to be in the moment. All children do that for their parents, but it is particularly true for Sky. Four years ago, things were so bad Sky could not even attend school for an entire day. My life was dominated by trying to teach my classes, trying to run a household, trying to fit everything into the few hours he was at school. On bad days, those few hours could turn into a few minutes. I had to take him and pick him up because the bus was no longer an option. I couldn’t be a friend to anyone because I physically and emotionally could not be there for them. I had no patience with good and decent colleagues who told me how busy they were. Busy? Try spending an evening sitting in a closet with your back to the door trying to hold it shut while your child kicks it in. I had even less patience with good and decent students who were “stressed” because they had a paper due. But Sky, as he always does, showed me the way. Even on the worst of days, Sky would find something to enjoy, even if it lasted less than 30 seconds. Maybe it was his beloved vanilla ice cream; maybe it was a chance to see 10 minutes of “Press Your Luck.” So I started to look for my joy. Every morning while I help Sky to get ready, I put his shoes on his feet. Then, following the ritual, I lie back on his bed while he puts his feet into his shoes. Then he sits down and puts his feet out for me to tie his shoes. I realized I had approximately 17 seconds where I could lie back and not have to do anything, fear anything, clean anything, teach anything. Seventeen seconds it took for Sky to jam his feet into his shoes, sit back on the chair and put his legs on my lap. Some days, those were the only blissful 17 seconds in my day, but they sustained me.

Today, things aren’t great, but they are better. My joy is not compressed into those 17 seconds and can extend throughout an entire day. We are still isolated, however. Odd how so many parties that used to include invitations for families are now “adults only.” As friends’ children get married, children I’ve known their entire lives, I get asked to fewer and fewer weddings. Friendships not nurtured die off, I tell myself, not wanting to believe Sky and I are just unwanted. Oddly, and for better or worse, we’re content; but I still want a conversation.

Here is a letter she wrote, pushing Kent State to give domestic partner benefits to employees. It isn’t about autism. but I appreciated the sentiment.


Domestic partner benefits strength of new contract

Dear editor:

I support the Kent State administration’s offer to extend the faculty contract one year. This offer includes the pledge not to raise health care premiums (no small matter these days) and, most importantly, to implement domestic partner benefits. The struggle for domestic partner benefits on this campus has been long and fraught with charges and countercharges of misleading statements and outright lying. AAUP’s recommendation not to accept the one year extension of the contract which would finally bring justice to gay and lesbian faculty, their spouses and their children is shortsighted. Domestic partner benefits are a vital tool in the recruitment and retention of quality faculty. How can we be certain domestic partner benefits will be obtained under a new contract? We cannot, and history suggests they will not be. Indeed, the administration might well see the AAUP as marginalizing domestic partner benefits or at the very least indicating a willingness to trade them away for something else, particularly higher salaries. The latter raises another issue I have with AAUP. In the past I, like other faculty, have received numerous charts indicating how our salaries would be much lower if it were not for AAUP. Now we are being presented salary charts saying our salaries could not fall much lower. I simply do not understand this. What I do understand is that accepting the contract extension will in all likelihood not help me. My guess is this means there will not be a faculty buyout and the autism exclusion clause in the current contract will continue. Still, I support the extension based on my belief that the single most important issue before us is making certain domestic partner benefits are guaranteed.

Her nephew put together a slide show which I think is worth watching. It is mostly (about 3/4) about her before Sky, but has a number of photos of her with Sky.

In writing this piece I am in no way saying Prof. Steuernagel would have agreed with any or all the positions taken on this blog. But, if I could I would share one of my favorite posts with her, one about trucks.

Finally, here is a letter that she wrote. This letter was found in her personal affects after her death.

“To whom it may concern:

“If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me. I have tried my best to get help for him and to end the pattern of violence that has developed in this home. I believe my best has not been good enough. That is my fault, not Sky’s. Numerous people know about the violence and many have witnessed it. We have all failed Sky. I do not want him to be punished for actions for which he is not responsible.

“Trudy Steuernagel.”

This letter, or more specifically the stories about this letter, are what prompted me to finally write about this story. In the introduction to the article linked above, they only quote the first line:

“If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker.”

They save the entire letter for the end of the story. I have read about this letter in other places where they only gave the first line of the letter. To me, cutting out that one line is being used to tell a very different story than what I believe Prof. Steuernagel intended with her letter. I’ll let you decide for yourself.

I wish Sky Walker and his extended family well through these very tough times. I wish Sky Walker peace.

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