Archive by Author

Another autistic child murdered

20 Nov

The Wisconsin State Journal reports that 12 year old Kyle Dutter was murdered by his dad..

He wasn’t killed. He was murdered. His dad, his own father, put him in the car, drove him a distance and then shot him. This coward then turned the gun on himself, thus at least saving Kyle’s family the sort of horror and recurring tragedy that the McCarron family had (and still have) to face following the murder of Katie.

On Tuesday, an anonymous 911 caller directed Madison police to a sport-utility vehicle parked in front of Haen Family Park on the city’s Far West Side. Inside, police say they found Dutter and his son with gunshot wounds.

Kyle, who had a developmental disability, died that day. His father died Wednesday. Authorities say Dutter, 36, recently of Middleton, shot his son, then himself.

There is a website for Kyle which shows an excitement about Hallow’een. There are also a collection of photos on the website showing Kyle and his killer.

There can’t be any excuses for this. None. Kyle’s killer may well have been suffering from financial pressures or other kinds of pressure and the locality may well have had a severe lack of appropriate autism services – so what? That is no excuse – and never should be – for picking up a weapon and taking away someone _elses_ options and life. Kyle had a mother. Why not simply take Kyle back to her? What about Kyle’s grandparents mentioned in the article? There was no need for this.

I have a 16 year old son who is just beginning to spread his wings in the world. Kyle Dutter is another in what is a unnervingly long line of autistic children who will never have that opportunity, an opportunity denied to them by the very people who should be providing it to them.

I object! (Part 3)

20 Nov

If you’ve been reading these past few days, you know that I find a recent letter sent to the IACC by a number of autism organizations to be, well, objectionable (hence the post titles!). I’ve noted that I don’t like the way they claim backing from a united “autism community”. I don’t like the way they are presenting their arguments in their letter (here and here).

And now, for the last part of their letter.

Bullet point (d), or, we want a bigger say

Provisions for accountability and evaluation for the research spending are absent. Adoption of oversight, review and evaluation mechanisms, such as an Autism Advisory Board and a Department of Defense grant review model, should be added to the plan.

They are asking for an “advisory board” or AAB and a grant review system. Generation Rescue attempted (and apparantly failed) to get an AAB put in place by lobbying he Secretary of Health and Human Services. Now they are pushing the IACC to institute an AAB and also add DoD grant review model.

Let’s look at these proposals one at a time, starting with the AAB.

This is not the time to institute the Autism Advisory Board. President-elect Obama will soon be in office. He has specific ideas on autism and disabilities in general. These include an “autism czar” to coordinate autism activities. Let Mr. Obama and his team make the next changes in the structure of how autism research activities are conducted.

Second, the IACC is already an advisory board. Why are people asking for a second layer, when the IACC process has been working well? OK, you got me, it’s a good bet that these people don’t think the process has been working well. If I were to venture a guess, they are unhappy about the lack of a prominent statement about the “epidemic” and/or “vaccines” within the Plan.

Would an Advisory Board change that? Let’s look at how the Advisory Board is mentioned in the report that accompanied the CAA (note that the “autism advisory board is not mentioned within the CAA language itself):

[congressional report] The committee further re-examined the Interagency Autism Coordinating Committee (IACC). In particular, the committee wanted to increase the amount of public participation (from two individuals) to at least six. In addition, the IACC has been tasked to make recommendations to the Secretary regarding the public participation in decisions relating to autism spectrum disorder. For instance, the committee notes that the IACC may recommend providing other, additional, formal mechanisms, such as an Autism Advisory Board, to provide additional public feedback and interaction. Further, the Secretary may opt to provide such a mechanism without the recommendation of the IACC.

The committee expects that the IACC will be the primary mechanism for the coordination of all research, surveillance, and early detection activities within the Department of Health and Human Services. As agencies implement specific activities related to autism spectrum disorder, they should strongly consider those activities outlined in the Autism Research Matrix.

So, even if an Advisory Board were formed, it would still be the IACC that has the task of coordinating autism activities within HHS.

That would seem to me to be a potential reason why they are now asking for something akin to the DoD grant review process–to add some actual power–oversight and control–to the new “advisory” groups they are proposing.

Again, perhaps someone can correct me here in what I am about to say. But from my perspective I can’t see why the NIH needs a second layer of grant review. For the DoD, an agency that is not primarily involved in medical research, I can see a review board. For the NIH, an agency whose functions already include a peer-review grant process, I don’t see that the case is very clear at all for an additional review board. Let the NIH do what it is chartered to do.

Let’s look at that last bullet point from the letter:

[Letter]The planning process diminished the voices of important segments in the autism community. Future activities related to the SP should ensure integral participation of the diverse community representing families and individuals with autism.

First, I’d switch the wording in that last sentence to “….representing individuals with autism and their families.” (and I wouldn’t object at all to people who would change it to “…representing autistics and their families”)

Second, the very segments of the autism community who are signing this letter were given ample opportunities to be heard. IACC meetings have been dominated by a very few with a vary narrow message. An entire “Town Hall” meeting was held on the West Coast to obtain more input. Letters have been sent, investigations mounted and pressure applied. It is quite a stretch to state that voices were “diminished”.

Having your voice “heard” and having your requests acted upon are very different things, however. And that is the flaw in the logic of this letter: the voices were heard, but it appears that they carried a message that didn’t meet the basic criteria for inclusion in the Strategic Plan: a basis in sound science.

To take a recent example: People can say over and over, “we want research into chelation”. But, if (a) there is no reason to suspect chelation would help as autism is not heavy metal poisoning, (b) there is a possibility that chelation could hurt as demonstrated by recent rodent studies

Conclusion, or, tell them again

[letter]We ask that the IACC approve these specific action items: (a) adoption of amendments to the plan responsive to the above 5 concerns; (b) specification that research spending be at least the CAA minimum and establishment of a workgroup to be convened in January 2009 to develop recommendations to the IACC for increasing the research spending to at least that minimum and adding objectives which will bolster research on the environment, gene-environment and treatment; (c) inclusion of oversight provisions including an AAB and DOD-model review process; and (d) specification that oversight bodies and workgroups have strong and diverse community representation.

Which pretty much summarizes the bullet points above. My eye was drawn to the idea that a workgroup be convened in January 2009. Why? Could it be that they would like this workgroup to be a fait accompli when President Obama takes office? Again, let Mr. Obama put his plans into action.

The final short paragraph caught my eye as well:

[letter]Each day, decisions are being made on autism research by NIH and other federal agencies which are outside of the SP. It is imperative that the plan be improved in the areas noted above at the November 21, 2008 IACC meeting.

The strategic plan (SP) is not approved yet. By definition, decisions are being made that are outside of the Plan. Also, I sincerely hope that decisions continue to be made outside of the Plan. Who can predict what may happen in the next few years that may require action outside of the Plan? As the old saying goes, if we knew what the answers were going to be, it wouldn’t be “research”. I really have a hard time figuring out why they included that sentence in this paragraph.

The letter is then signed:

Autism New Jersey (formerly COSAC)
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

Much speculation could be had about what tradeoffs were made in order to get all these groups to sign the above letter. It isn’t much of a stretch to say that the letter doesn’t go nearly as far as many of the signatories would have gone on their own in the area of mercury and vaccines.

It is notable that Autism Speaks signed on to a letter with a number of groups that have been quite negative towards AS (to put it mildly). It is also notable that at least one, and this one major, autism research organization is not represented on this list.

I realize it is just one rather short letter, and my responses have been rather long in comparison. I also realize that many of these points are probably obvious to those at NIH and/or working on the IACC. And, yet, I somehow had to do this!

On to more important topics soon!

I Object! (Part 2)

19 Nov

It’s amazing that a relatively short letter could be so objectionable as to take multiple blog posts to discuss.

And, yet, here I am, on my third post. You can read the other two, I Object (Part 1) and Why should the Strategic Plan include vaccines.

Continuing on with bullet points (b) and (c)…

Bullet point (b), or “you are leaving money on the table”

[Letter](b) The plan fails to allocate commensurate resources. The CAA authorized $645 million for NIH research over five years. The plan falls short by close to $200 million. Given the urgent situation, we consider the CAA allocation to be a minimum requirement for federal agencies and feel that even greater resources are needed.

Who is going to say no to “we should apply more resources to the situation”? Certainly not I. But I’m not an MBA. I count resources in terms of how many good research groups are doing quality research in relevant areas. Counting the money, that comes second.

This is similar to the method used by the IACC. People tend to think–and this letter helps perpetuate–the idea that the CAA appropriated money and that the IACC worked from that budget to create the Plan.

Both ideas are incorrect.

First, in admittedly confusing language, the CAA authorized the appropriations. The CAA states, “…there is authorized to be appropriated..”, not, “this amount is appropriated”. Another way to look at it is to see how often “subject to the availability of appropriations” is used in the text of the CAA. It isn’t as though there is a bank account with $645M waiting to be tapped into.

Second, the IACC did not work from a budget and then decide on a Plan. They didn’t say, “Well, we’ve got $645 million, how will we spend it?” What they did was say, “what needs to get done?”. Near the end of the process, they passed the Plan on to the implementation subcommittee to draft the budgets for the various projects.

This sounds like the much more defensible method. The IACC can go to congress and say, “this is what we need to get the job done.” Had they come up with a budget higher than the CAA allocated, they would have been in a good position to ask for more. They are (I hope) in a good position to get their budget fully funded–they can defend why they came to the total cost in their budget.

That said, of course I’d like to see more research funded. But, I’d like to stay on a friendly partnership with the NIH too. Presenting their actions inaccurately (as this letter appears to do) doesn’t accomplish that in my mind.

let’s look at what the CAA authorized to be “appropriated“:

[Combating Autism Act]`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $15,000,000.
`(2) For fiscal year 2008, $16,500,000.
`(3) For fiscal year 2009, $18,000,000.
`(4) For fiscal year 2010, $19,500,000.
`(5) For fiscal year 2011, $21,000,000.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $32,000,000.
`(2) For fiscal year 2008, $37,000,000.
`(3) For fiscal year 2009, $42,000,000.
`(4) For fiscal year 2010, $47,000,000.
`(5) For fiscal year 2011, $52,000,000.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out section 399CC, 409C, and section 404H, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $100,000,000.
`(2) For fiscal year 2008, $114,500,000.
`(3) For fiscal year 2009, $129,000,000.
`(4) For fiscal year 2010, $143,500,000.
`(5) For fiscal year 2011, $158,000,000.’.

So, the $645 million number comes from section c. Two things to notice. First, there are large sums in sections (a) and (b) as well. I hope they are getting appropriated. Second, notice that there is money budgeted for 2007 and 2008 in that number. Remember that the CAA hasn’t been funded yet? Has NIH been sitting on their hands, waiting for the budget before they do autism research? Hardly.

The NIH budget for autism in 2007 is estimated at $127 million ($27M more than the CAA called for all IACC sponsored research, which includes CDC and other agencies). Similarly, $128M is the estimated budget for 2008 ($14M above the IACC budget).

Perhaps I am missing something. It is quite possible. But it appears to me that the NIH is working in good faith here.

Again, given the urgent need–to identify and serve the underserved in this country–I would consider there to be a great reason to increase resources applied by the IACC. I just don’t think that is want the signators of that letter had in mind. Consider the next point they make:

Bullet point c, More environmental research, or, what happened to the “V” word?

[Letter]Research on the environment, gene-environment interaction, and treatment are underrepresented in the draft plan. The plan should apply additional resources to these areas.

As already discussed, I found this statement interesting for what it doesn’t say, far more than what it says. What it doesn’t say explicitly is “mercury” or “vaccines”. As noted in that previous blog post: if the signatories of that letter are OK with this wording, it should be OK in the Strategic Plan.

Sullivan’s take

The order of these two bullet points sends a clear message: The Plan doesn’t use all the money “appropriated” and, yet, the Plan should put additional resources into environment and treatment.

Or, “why don’t you take some of the $200 million and spend it on these areas?”

It would be a good question if that was the way the process worked. (A) the money wasn’t appropriated (so there isn’t $200M sitting unused) and (b) the Plan was built on a “what needs to be done” basis, not “how much do we have to spend” basis. The push for more environment/treatment really needs to be justified in terms of “what needs to be done”.

But, again, I’d agree that more resources would be welcome. And, again, I would suggest attempting to meet the great need of serving the underserved. Research into services like the Taft Transition to Independent Living program comes to mind.

more to follow…

I object! (Part 1)

18 Nov

If you’ve been reading LeftBrainRightBrain lately, you know about “The Letter“. If you haven’t, here’s a quick introduction: A number of autism organizations drafted a letter and submitted it to the members of the Interagency Autism Coordinating Committee (IACC). The letter attempted to invoke “the autism community” (see the AoA blog post for more on that) and that was objectionable to me. Kev took up the idea of Who makes up the autism community. It is clearly an important discussion–there are over 100 comments for those two blog posts.

I’ve been told that the letter marks an achievement in advocacy–bringing together all these groups. And it was–someone got Generation Rescue to accept a document that didn’t explicitly call for research on vaccines. Whatever underling who told the top people there, “this is the best you are going to get” was pretty brave.

But, Let’s get back to the letter itself. Because, believe me, I for one have many more objections to that letter. Going through point-by-point takes some, but I present below my views. I’d suggest this: take a look at the letter, see what you may agree with or disagree with, and check back here to see if you agree or disagree with my take.

I’ll be frank. Every section had something objectionable in it.

Let’s take a closer look at the letter, shall we? I’ll add my thoughts section by section, starting in this post with the introduction and the first bullet point.

Introduction, or, “we are united”

[Letter]November 12, 2008

RE: Concerns on Draft IACC Strategic Plan

Dear Members of the IACC:

The Combating Autism Act required the IACC to prepare a strategic plan for autism research in order to enhance the quality, effectiveness, and overall benefits of autism research spending within HHS agencies. While the 2008 planning activities reflect improvements relative to earlier Autism Matrix efforts, ultimately the draft plan and the planning process have fallen short. Autism advocates have identified a range of deficiencies and each may place priorities on different concerns. Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here.

Ouch–there it is: “Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here”. For any confused as to what “community” means can read the title of the Age of Autism blog post, “Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research.”

That’s been discussed a lot (feel free to join in) here and here.

But, let’s look at the substance of the Letter. They make a number of bullet points, (a) through (e).

Bullet Point (a), or “no Urgency”

[Letter](a) The plan fails to communicate a sense of urgency reflecting the alarming increase in prevalence and autism as a national health emergency. The beginning pages of the plan should embody urgency and the critical need of the government to apply the resources to address a crisis situation.

Variations on the word “urgent” are used at least 5 times in the Draft Strategic Plan.

What do they want? They want the Plan to specifically state that autism causes “considerable human and financial toll”, as support for the greater need for “prevention and treatment”. Those are speculations, those are statements from SafeMinds in complaining about the “Strategic Plan” in a previous letter.

Sullivan’s take on “urgency”
When I think of “urgent” in regards to autism, claiming an epidemic is not high (or anywhere) on the list. Finding better ways to help people with autism, yes, that would be high. In terms of the “alarming increase in the prevalence of autism”, I also see things differently that the authors of this letter. I see great strides in identification more people with autism. But, I see a job that is not complete. Racial and ethnic minorities are vastly under-represented in the current autism counts. Autism counts vary significantly by geography. Lastly, but certainly not least in importance, there is likely a vast pool of undiagnosed, underserved adults in this country. But, that is a topic where the mantra “absence of evidence is not the same as evidence of absence” is ignored in place of promoting an epidemic.

Ignoring the underserved is a truly shameful position that these organizations have taken.

However, I am pleased to see that within the Plan, ethnicity, race and lifespan issues are prominent. There is even a prominent statement in the introduction of the Plan on lifespan issues:

[Strategic Plan] Lifespan Perspective: Historically, ASD has been characterized as a disorder of childhood. Although most individuals with ASD will not outgrow their diagnosis, their symptoms will change in form and severity over time. There was great support during the development of this Plan for more research on ASD in older individuals, especially the need for practical strategies for increasing the quality of life and functioning of adolescents and adults with ASD. As individuals with ASD advocate for themselves and expand our knowledge of their experiences and needs, they become partners in the research effort.

Does that rise to the level of “urgency”? I don’t know, I’ll take “great deal of support” happily.

Urgency or politics?
The issues noted above highlight what I see as a big problem with this letter: it is attempting to make the Plan a political document, possibly acknowledging the “epidemic” of “vaccine injury” autism. I am not naive enough to think that there are no politics involved in government sponsored medical research, but the backbone of the NIH process is scientific peer review of research proposals. I’d rather see the Plan document stay closer to that ideal than become political fodder in a struggle that is ripping our community apart.

Such a short letter, so much to discuss. And, we are only at the first bullet point! But, even at this point, it is clear that this is a letter that doesn’t come close to representing the views of this member of the greater autism community.

More to follow…

The Taft "Transition to Independent Living" program

17 Nov

Life transitions are an issue one hears about a lot with people with autism.  For young people, transitions to school, from elementary to middle school, from middle school to high school.

But, what about the transition from a school setting to an independent living situation?  What supports are available to make that transition: probably the most important transition?

A while back I heard about a program in “Taft” that targeted this exact transition.  I was somewhat surprised.  First, that there was only one program in California mentioned and, second, that this program was in Taft.  Not that I have anything against Taft, it’s just that my own prejudices made me think that such a program would be in a larger metropolitan area.  The city of Taft, California, is about 60 miles northwest of Los Angeles, in California’s central valley and is home to about 9,000 people.

The program that caught my eye is called “Transition to Independent Living” (TIL) and is hosted by Taft College, one of California’s Community Colleges.  Community colleges are 2 year schools, publicly supported.  They are great places for everyone from high school kids trying to get a jump on college credit, to older adults retraining for new jobs, and a broad spectrum of other people with various goals.

From their webpage:

The Transition to Independent Living Program (TIL) is a post-secondary experience for developmentally disabled adults emphasizing learning independent living skills.

Students are required to live in either the dorm or in a college run house.  Instruction is 5 days a week, 11am to 5pm, and a community integration program is run on weekends.  The course runs 22 months.

Instruction topics include: Meal Preparation, Money Management, Shopping, Housekeeping, Use of Appliances, Safety,  Communication, Transportation, Personal Care, and Interpersonal Relationships.

One thing I really like about this program is that people graduate.

Students are eligible for graduation when they complete the required course work and independently demonstrate the learned skills.  At that time, the TIL staff assists graduated students in transitioning into an independent living situation in their home community.  The TIL program tracks all of our graduates for a 10 year period to measure outcomes of the students and the program.

As a side-track, there is a lot of discussion in California about graduation requirements and special education students.  It is my feeling that graduation represents true accomplishment.  A “gifted” student who skates through high school and gets a diploma didn’t accomplish as much as the student who struggled for every credit.  But, that’s hard for governments to quantify, so standardized testing (CAHSEE) and other requirements are used to determine if someone graduates.  So, to repeat myself, I was much pleased to see that this program offers graduation. But, back to the main topic.

I found the program intriguing enough that I contacted Jeff Ross, Director of  Student Support Services for Taft College with some questions. I had a short list of questions–but in the end spent a long time talking to Jeff about the program. The more I heard, the more I wanted to hear.

Jeff has been with Taft College sine the 1970’s, working with people with developmental disabilities. He has worked a few positions in the area, and was instrumental in starting the TIL program.

One of the valuable assets that the Transition to Independent Living (TIL) program has is their dorms. Dormitories are not standard for community colleges. Taft College had dorms for their football program, but when sports were de-emphasized at Taft in the early 1990’s, the dorms became available for the disabilities program.

As an aside–for anyone who knows Taft even a little knows that “de-emphasizing sports”, especially football, was likely not an easy transition for the community. Taft is a big football town, and the Taft-Bakersfield rivalry is legendary.

The program is two years. The first year the students are in the dorms (about 28 students) and the second year the students are in community residences owned or leased by the college, for a total of 48 students. In dorm or the community, students each have their own single room. This is important for the students as a whole as they learn to be independent. It is important for the autistic students in that it gives them a sanctuary for private time.

I wanted to know if they thought that the location was an advantage for their program. There are some big advantages. Taft is fairly isolated, and they have good community support for the program. This helps the students be comfortable in their community. Students come to Taft from all over California. The students are truly “going away to college”. This last part is very important. The students are truly buying into the program and committing to the program. That commitment aids in their success.

There is a disadvantage to the location in that the opportunities for vocational training in the community are limited. All students work part time, some in on-campus jobs and others in community vocational programs.

I asked about other similar programs either in California or nationwide. He mentioned a program at UCLA, and that there is a national consortium of college presidents who are looking at building similar programs. But the more I heard about this program, the more I wondered why there aren’t more of them. There are some other programs, but they are not residential and many are not as comprehensive as TIL. For example, many community colleges may have a few classes, but nothing on the scale of TIL.

The TIL program is 30 hours/week of instruction with 8 hours per week of vocational training (paid employment). It is quite intensive, with community integration programs during the weekends and seven day a week staff.

One topic Jeff bought up was the fact that Community Colleges are open to all. If you are over 18 or have a high school diploma, you can attend. Many people with developmental disabilities do attend the various California Community Colleges, but without proper supports, they often are not successful.

How successful is TIL? They track graduates for 10 years. Right now, they have 142 grads of which 95% live independently and 93% are employed. I mentioned to Jeff that his screening process might be picking out those who have a better chance at gaining independence, and he was quick to correct me. Their program serves people with mild to moderate disabilities. I have no doubt that they are making a great impact on their students.

Another measure of success is in the area of the use of “supported living services”. These are services provided by the Regional Centers to help individuals with developmental disabilities stay in independent housing. One example would be banking or checking, where helping someone manage his/her budget and pay bills could make the difference in being able to stay in his/her own home. Typically, adults receiving supported living services use about 88 hours per month. Those who have been through the TIL program who use supported living services use 30 hours per month. One third of the graduates use no supported living services.

The program costs the student’s regional center about $29k/year. But, considering the numbers above, it is quite clearly cost effective on a mere dollar basis. This doesn’t even touch on the human aspects.

There is a very important word just mentioned: graduates. The students who complete the program graduate with certificates of completion similar to other vocational programs. Few (16%) ever go back for college level classes as they have that sense of completion and accomplishment that comes with graduation.

The TIL program students go through graduation ceremonies with the rest of the College. There is a second ceremony a month later, as the TIL program continues after the regular graduation date. For the last three years, the TIL valedictorian has been an autistic student.

That brings up the fact that this is an integrated program, with multiple developmental disabilities represented. I asked Jeff about this and found that in the first three years of the program they didn’t have students with autism. When they first came into the program, there was some concern about whether the program should be modified. They decided against modifying specifically for their autistic students and this turns out to have been a good decision.

As noted above, students have private rooms. This is beneficial to the autistic students in giving them a sanctuary of their own. On the other side of the coin, the mix of students and the intense program gives the autistic students models for personal relationships. The autistic students tend to lead academically, helping the other students. The non-autistic students help the autistic students on interpersonal relationships. So, the mix turns into a potential win-win for the entire group.

There is a transition specialist who helps the students integrate back into their own communities with housing and jobs after graduation.

Unfortunately, there is a 3-4 year wait list for the program, which in itself is a big indication of the need for more programs like this. Students typically start after high school transition programs–or at about age 22. Students often start touring the program at about age 16-17, with people starting to show interest in the middle-school to early high-school age ranges.

This really sounds like an amazing program. A really good idea that is making a difference. It sounds cost-effective and, more importantly, a real benefit to the students. I’ll be interested to hear what other people think of this program, but my reaction right now is: Why aren’t there more programs like this?

The TIL program has a website and a video (which I am going to try to get someone to YouTube so I can embed it here).

Who makes up the autism community?

16 Nov

On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’

Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.

The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.

The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.

The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.

2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.

2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.

2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.

The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.

And these are the people who claim to be the autism community?

The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.

These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.

A (head) space of my own

14 Nov

Four days ago the New York Times published a fascinating piece on the hypotheses of two scientists who are positing that mental disorders of an unknown variety and number are all actually one disorder. Specifically mentioned are autism (of course), schizophrenia, manic depression (aka Bipolar), depression:

In short: autism and schizophrenia represent opposite ends of a spectrum that includes most, if not all, psychiatric and developmental brain disorders. The theory has no use for psychiatry’s many separate categories for disorders, and it would give genetic findings an entirely new dimension.

Two fascinating aspects of this appeal to me. Firstly is the idea of this proposition as ‘hypothesis generation’:

The reality, and I think both of the authors would agree, is that many of the details of their theory are going to be wrong; and it is, at this point, just a theory,” said Dr. Matthew Belmonte, a neuroscientist at Cornell University. “But the idea is plausible. And it gives researchers a great opportunity for hypothesis generation, which I think can shake up the field in good ways.”

Can you sense where I’m going to go with this yet? Shaking up the field in _good_ ways…..as oppose to _bad_ ways….I’m getting predictable right?

Well, you’d be right. This is definitely a good sort of hypothesis generation – it leans on sound scientific theory and provides a possible next step for a wide variety of mental differences (my word, ‘disorder’ is not right for me) which other scientists can break down into testable ideas. Some will be right. Lots will be wrong. And science will carry on getting closer and closer to an accurate reflection of reality.

And the bad sort of hypothesis generation? It relies on science that is either unsound, improbable or fabricated from whole cloth. It represents a bad financial investment as the return from this sort of hypothesis in terms of solutions is pretty much zilch. And as the recent letter to the IACC sent by groups pursuing such hypothesis shows what it does produce is an overblown sense of entitlement and the lack of recognition that science cannot be served up like a drive thru burger meal.

Anyway, moving on from that, the second thing that appeals to me about this proposition is the fact that it links my autistic child and I in non just the bonds of blood and familial genetics but the genetics of difference too. She is autistic I am manic depressive – we have a head space all of our own.

Back in July, I wrote an entry that referred to an ever-shifting Aurora of autism’. I would love to have underestimated and would like to be able to refer to ‘an ever-shifting Aurora of neurodiversity’ where I share genetics differences with my autistic child but in slightly different shifting shades. All my online and offline friends with OCD, depression, dyslexia, schizophrenia and a wild mix of others are really my genetic family.

Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

Vocational Rehabilitation and Autistic Adults

13 Nov

I recently saw a paper in the Online First section of Journal of Autism and Developmental Disorders called “Use of Vocational Rehabilitative Services Among Adults with Autism“. I knew I had to read it. It comes from one of my favorite research groups, that of Prof. David Mandell. I’ve been carrying this paper around in my pocket for a month now. It is folded, tattered and filled with highlight marks.

The reason for the delay: how to condense this paper into a meaningful blog post without essentially copying the entire paper? As it stands, this will be a series of excerpts. The reason for blogging it: papers on issues directly related to adults with autism are few. This one looks at what I consider to be a very important question: training to get employment for adults with autism.

One other note: I will skip over the data analysis section. This will be a long post already, and I want to concentrate on the discussion of the results. But, rest assured, they did their due diligence and analyzed the data thoroughly.

So, even though this may not be the best presentation of the study, if I don’t do it now, it may never get done.

Here’s the abstract:

This study examined the experiences of individuals with autism spectrum disorders (ASD) in the US Vocational Rehabilitation System (VRS). Subjects included all 382,221 adults ages 18–65 served by this system whose cases were closed in 2005; 1,707 were diagnosed with ASD. Adults with ASD were more likely than adults with other impairments to be denied services because they were considered too severely disabled. Among those served, adults with ASD received the most expensive set of services. They and adults with MR were most likely to be competitively employed at case closure. Post hoc analyses suggest that their employment was highly associated with on-the-job supports. The results suggest the importance of the VRS in serving adults with ASD.

If you are interested, here is the first page (for free).

The paper points out that adults with ASD require considerable supports, with possibly only 15% achieving independence, and another 20% “functioning well in the presence of community based support.” This points out the great need for studies such as this one. We need a better understanding in order to improve the situation for the estimated 65% who are not independent or “functioning well”.

In the United States, the vocational rehabilitation system falls under the Department of Education, and helps with assessments, diagnosis, counseling, job search assistance, assistive technology and on-the-job training.

The outcomes include “Competitive employment”, which involves integrated settings (with supports as needed) and wages at or above the minimum required by law. Alternatively, Non-competitive employment can be paid below the minimum wage, and can include sheltered employment.

Results were compared for people with ASD, Mental Retardation, Specific Learning Disability (SLD) and Other Impairment Cause (OIC).

Individuals with ASD’s have “markedly different vocational needs than individuals with other developmental disabilities”. And “the small body of research in this area suggests that services provided through vocational rehabilitation programs are less than optimal for individuals with ASD.”

The authors stress, repeatedly, the value of employment. The concluding paragraph starts with the statement, “Work is among the most valued social roles in our society. Many individuals with ASD can achieve successful employment outcomes, despite questions about access and cost-effectiveness.” The value of employment is also spelled out in an earlier section:

Our findings are also important in light of research indicating that supported
employment through vocational rehabilitation programs may improve cognitive performance of adults with ASD (Garcia-Villamisar and Hughes 2007) and generally improves quality of life (Garcia-Villamisar et al. 2002).

They found that at the end of VR training, 42.2% of those with ASD were competitively employed, whith 2.1% employed in a sheltered setting. The remaining (55.7%) were not employed. These results are better than those for the other groups. The numbers for those competitively employed were, 39.4% (mental retardation), 37.5% (SLD) and 35.1% (OIC).

They found that 4.3% of individuals with ASD had cases closed for having a disability “too severe to benefit from services”. Compare this to 2% for those with mental retardation, 0.4% for those with SLD, and 2.2% for those in other categories. So, people with ASD were more likeley to be denied services for this reason. They state that this “hints at the possibility” that “some people with ASD’s may never explore the use of VR services because they (or their families) do not see it as a viable option or are discouraged from seeking services.” This could affect the numbers found for those achieving competitive employment.

The costs were compared:

VR expenditures were much higher for individuals with ASD than for those with other impairments except people with MR. This difference may be due to the additional needs of people with ASD (Muller et al. 2003). Alternatively, the VR system may not be structured to provide services to individuals with ASD in the most cost-efficient manner (Hillier et al. 2007). Both potential explanations beg for additional research on the most cost-effective strategies for achieving competitive employment.

The median costs? $2,380 (ASD), $2,160 (mental retardation), $1,108 (SLD), $1,280 (OIC).

So, yes, the numbers were higher for the ASD group. But even $2,160 per person to me sounds like a pretty darned good investment to get a sizable fraction of a group employed.

The authors noted:

VR expenditures were much higher for individuals with ASD than for those with other impairments except people with MR. This difference may be due to the additional needs of people with ASD (Muller et al. 2003). Alternatively, the VR system may not be structured to provide services to individuals with ASD in the most cost-efficient manner (Hillier et al. 2007). Both potential explanations beg for additional research on the most cost-effective strategies for achieving competitive employment.

There is a lot more valuable information in this paper. One thing that is missing is who funded the research. I’d love to hear that this is the sort of research NIH is sponsoring, and will continue to sponsor through the IACC process.

I’ve already quoted part of the conclusion. I think it worth quoting it in whole here:

Work is among the most valued social roles in our society. Many individuals with ASD can achieve successful employment outcomes, despite questions about access and cost-effectiveness. Individuals with autism and their families should seek out supports and employment; other support providers should emphasize employment as a possible social role; and policymakers should continue to examine ways in which they can enhance the variety and accessibility of supports for adults with autism, including vocational services, in order to ensure that they have opportunities to live and contribute in their communities.

ResearchBlogging.org
Lindsay Lawer, Eugene Brusilovskiy, Mark S. Salzer, David S. Mandell (2008). Use of Vocational Rehabilitative Services Among Adults with Autism Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-008-0649-4

Autism Myths

11 Nov

It is my great pleasure to release my latest website – Autism Myths. Its not a blog, its more like a collection of blog posts on very specific subjects regarding autism.

Topics referenced so far are:

The IOM Are Afraid to Look At Susceptibility Groups
The Myth That Autistic Children Can’t Develop
The Myth of No Autistic Adults
The ‘Leaky Gut’ Hypothesis
The Myth of Overwhelming Immunity
Misleading Lab Reports
“Mrs Toast”
The Autism Epidemic
The Verstraten Paper
The Poling Concession
The Simpsonwood Conspiracy
The Amish Anomaly

Please use the contact page to send me comments and suggestions but if you do suggest stuff, please include a link to a blog entry that you think best dispels the myth in question. Please further note that the site is *not* just about vaccines, it is about all myths related to autism.

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