Tag Archives: Autism

Donald Trump believes that “the education is flush with cash”. How did he get that “alternative fact”?

23 Jan

Donald Trump was inaugurated last Friday. His speech was overall very poor, but one statement stood out to me above all the others. A statement which is not getting much (if any) press:

But for too many of our citizens, a different reality exists: mothers and children trapped in poverty in our inner cities; rusted out factories scattered like tombstones across the landscape of our nation; an education system flush with cash, but which leaves our young and beautiful students deprived of all knowledge; and the crime and the gangs and the drugs that have stolen too many lives and robbed our country of so much unrealized potential.

Emphasis added.

I don’t think anyone who actually deals with the education system in America would consider it “flush with cash”. That said, no one involved in special education would every say such a clearly false statement.

We absolutely are not serving our students, but this is because our education system is woefully underfunded. My own district cut back on many school days a few years ago when California cut the funding sent to districts. Guess what, when funding returned, the district didn’t restore the days we lost. We have about 10 education days fewer than before the budget crunch.

And that’s just in general. Special Education, since the first law in the 1970’s, was supposed to come with 40% of the costs covered by the Federal Government. OK, they said a “maximum” of 40%, but the Federal government has never come close. Estimates are that the contribution is about 17%.

These are the disabled children of our country. Does “America First” mean, “non disabled American’s first”, Mr Trump? Or will you be the one who finally corrects this injustice? That’s going to be hard to do if you think that schools are “flush with cash”.

You’ve come down from your tower to live in a mansion. One walled off from the world. And you surround yourself with people who, like you, don’t understand the experiences of the majority of Americans. And when you make statements like “flush with cash”, it shows.

I’ll be honest, one disappointment with Mr. Obama’s administration was his failure to live up to America’s commitment to people with disabilities, including funding Special Education. How about you prove you can do better than Mr. Obama–don’t tell us that school systems are “flush with cash”, make them flush with cash.


By Matt Carey

Thank you to Lorna Wing, Ruth Christ Sullivan and so many more

4 Nov

Last weekend I was having lunch with my kid. Yes, we interact a great deal in these lunches but, yes, I also take some time to read. I was re-reading Steve Silberman’s book Neurotribes. There is a great deal of discussion in Neurotribes of people who changed how we understand what autism is, as well as how we (we =autistics and non autistics) relate to autistic people. Much of this comes out in one of the last chapters, where the discussion of how the film Rain Man came to be produced. Two of the many names that came up were Lorna Wing and Ruth Christ Sullivan. Both were parents of children with very high support needs. Especially in their time, the people involved in shaping the understanding of autism and autistics were largely parents.

Both Wing and Sullivan had children with high support needs. And, yet, Wing was instrumental in bringing about the understanding that autism is not just about people who were like her child. Wing brought the work of Hans Asperger from out of obscurity. None of this “not like my child” stuff. Sullivan helped found the National Society for Autistic Children (what we know today as the Autism Society of America). She was lobbied to get special education passed in the U.S..

And as I read about them, again, I was struck with, “I never wanted to be a part of advocacy. I just want to live my life with my family.” I want to quietly eat lunch with my kid and read books, and probably not autism related books.

It wasn’t until later that a few things dawned on me.

I was sitting in a restaurant, having lunch with my kid. A kid who is very, very clearly autistic. And who was being very, very obviously autistic. Something Lorna Wing and Ruth Christ Sullivan almost certainly couldn’t do. And something that is only possible now because people like them (as well as many others, including autistics) accomplished in acceptance.

Seriously, in their day I would have been asked to take my “retard” kid out of the restaurant and not come back.

I am able to sit in a restaurant because my kid attends an excellent school. I won’t go into details, but, yeah, good school = better life for all of us. And without special education laws that wouldn’t happen. And without the understanding of how to support autistics, brought about by so many that came before me, a good school wouldn’t even exist, law or no law. That school and our opportunity to send our kid there exists because of the hard work of so many people who came before me.

I’m no Lorna Wing. I’m no Ruth Christ Sullivan. I’m not one of the many autistics who have helped change the world–autistics who are “not like my kid” but who have, nonetheless, helped get my kid and me into a world where we can sit on a quiet Saturday afternoon and eat noodles. One of us being clearly autistic, and the other reading a book. And most of all, both of us welcomed.

So I’ll try to keep doing what I can to help keep progress happening.

by Matt Carey

Autism Speaks founder Bob Wright’s opinion is more important than science

24 Sep

Last year the Chief Science Officer of Autism Speaks made a simple and clear statement

“Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.”

It was nice to finally see someone from Autism Speaks make a clear statement without a lot of equivocation and “leave the door open” language.

But what I think is nice and what Bob Wright, the founder of Autism Speaks, thinks is nice are two different things.  The Wright family is, at least, sympathetic to the idea that vaccines cause autism (and, in at least one case, very outspoken on the idea.)  So perhaps I should have been surprised when Autism Speaks put on their website Rob Ring’s statement together with a statement by Bob Wright.

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.
Rob Ring
Chief Science Officer, Autism Speaks
Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually  made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.
Bob Wright
Co-founder, Autism Speaks
Because why should we let the Chief Science Officer have the actual word on what Autism Speaks thinks about an issue of science?  Why let a clear statement stand alone when one can leave the door open with “Scientific research has not directly connected autism to vaccines.”
And that was sad.  A sad move by Autism Speaks.  A sad move by Bob Wright.
But I’ve already written about that.  Why bring it up again now?  Well, because a reader here alerted me to the fact that Bob Wright and Autism Speaks have expunged the statement by their science officer. If one now goes to https://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism, one finds only Bob Wright’s statement:
AS backpedals on vaccines
I so want Autism Speaks to be an organization I could support.  And sometimes they seem to be moving in that direction.  But, in the end, they are still clinging to ideas like “vaccines cause autism”, ideas that cause a lot of harm within the autism communities.  And they also take a very stigmatizing approach to the discussion of autism, but that is another discussion.

Autism Speaks pretends to be a science driven organization, but they just aren’t.  The founder is the founder and his opinion means more than the results of scientific studies as expressed by their own Chief Science Officer.

By Matt Carey

‘Miracle autism cure’ seller exposed by BBC investigation

12 Jun

The BBC have a new story taking on the so-called “Miracle Mineral Supplement” in ‘Miracle autism cure’ seller exposed by BBC investigation.

MMS (AKA chlorine dioxide, CD, or part of a so-called “parasite protocol”) is a bleach solution produced by mixing two chemicals which are sold separately and manufactured often in rather dubious factories. Case in point, the BBC tested the chemicals they were given and found they were much stronger than labeled.

Through his website, Mr Edwards, who says he is not attending the conference, sold the researcher the one bottle of liquid labelled as 22.4% sodium chlorite and a second labelled as 4% hydrochloric acid.

When the BBC sent the chemicals to Kent Scientific Services, an independent laboratory, they were found to be 57% and 45% stronger than the advertised concentration respectively.

The BBC approached a seller of MMS and purchased the chemicals. The person selling MMS, one Leon Edwards, made the usual huge claims: it cures malaria, HIV, cancer and, of course, autism. Of course they don’t say “cure”, they say in this case “purge”.

MMS is a scam, plain and simple. It is sold as a cure to autism parents for use on their disabled children. The sales pitches present it with the usual approach: claims of children “recovered” together with some scienc-y sounding discussion to make it seem legitimate. And, of course, if you blame vaccines for autism and claim your product somehow heals vaccine injury, you will get nothing but support from a vocal group of autism parents.

Fiona O’Leary–an autism parent–is quoted in the story. She’s been a major advocate for autistic kids through her efforts to expose MMS.

Fiona O’Leary, a mother of two autistic children, is a leading campaigner against MMS. She warned: “This has been offered as a cure for autism in 60 countries.

“What worries me is people normalising this treatment – it does not even warrant the word treatment, autism is not a ‘disease’ that you can ‘cure’ with bleach.

“We need legislation so that people offering it are always prosecuted, but we don’t see the authorities addressing this issue.”

She added: “The suffering children are going through is shocking – it’s child abuse.”


By Matt Carey

You know, “Dr. Bob”, minority health disparities are HUGE in the autism community.

1 May

Robert “Dr. Bob” Sears is advertising himself again on the TacaNow blog. He’s telling us all about how he was an early adopter on biomed approaches to autism and how it’s all about listening to the parents. He tells us about how it all started with a parent asking for a prescription for an antifungal. No discussion of actually testing the kid for a fungal infection, just the standard story: parent asks, DAN doctor writes prescription story, DAN doctor takes credit for any gains, and no mention ever of any adverse reactions.

So, clearly, a case of same old/same old. So why write about it here? Because once again “Dr. Bob” shows how out of touch he is with the needs of the autism community. Oh, sure, he knows what parents at conventions like AutismOne want to hear (snarky remarks about vaccines and, you, the parents are always right). But what is one of the biggest problems in the autism communities right now? And has been for, well, ever? Disparities in diagnosis and access to treatment.

Here’s an example: racial and ethinic minorities are vastly under diagnosed and under served. In my state (same as “Dr. Bob’s”) if you are Hispanic, you are about 70% less likely to get special education services under the autism label as if you are white. I’ve plotted it out for my district that that ratio has remained basically constant for the past 14 years (as far back as the data are available).

I’m sure “Dr. Bob” can rattle off the latest CDC autism prevalence figures, or at least some of them. But if one actually reads the report, what does one find?

Non-Hispanic white children were approximately 30% more likely to be identified
with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children.

Given that, take a look at what Dr. Bob wrote on the TacaNow blog:

Yet, there is a shadow over all this success: April was supposed to be Autism Awareness Month. Did anyone even know? I checked the CDC website, and they proclaim April to be National Minority Health Month, with the catch phrase “Learn about CDC and HHS efforts towards eliminating health disparities,” as if THAT is the most important health crisis facing America today.

If “Dr. Bob” really believes that biomedical approaches are so helpful, why discount the need for outreach to minorities? Really, we have a HUGE problem with under diagnosis of autism in California among minorities. But you seem unaware of this.

One does wonder how many minorities, especially those with low incomes are served by the Sears clinic. I grew up in “Dr. Bob’s” home, Orange County, going to school along side farmworker kids. There’s a huge population of underserved minority kids there.

As an aside, here’s how one does an internet search, “Dr. Bob”. Top hit is Announcement: Autism Awareness Month and World Autism Day — April 2015. But that’s an MMWR (Morbidity and Mortality Weekly Report) from the CDC, and as a doctor you must follow those, right? Especially since the MMWR’s include, say, information about the recent California measles outbreak which you downplayed.

Here, while we are at it, let’s do another google search. The word “minority” on the “Dr. Bob’s” family website (askdrsears.com).

Gee, 5 hits. One on how only a minority of families skip the MMR vaccine. Only one on racial/ethinic minorities, an article on lice.

No hits for “Hispanic” on the Sears family website.

“Dr. Bob”, if you want to pretend to speak for the autism communities (you don’t), at least show us the respect of acknowledging one of the big issues in our community: under served and under diagnosed populations.

Of course, to acknowledge these points you have to also acknowledge that autism isn’t always diagnosed, and that we need awareness to get diagnoses and services to these communities.

Which is to say, you have acknowledge that autism “rates” are under counts. And that doesn’t fit with your ideas on vaccines causing autism, does it? Or did I misread you when you wrote that you were waiting to “proclaim from the rooftops” that the MMR causes autism? (odd how you edited the original version of that article to remove that comment, isn’t it.)

Seriously, “Dr. Bob”. Get out of the corner of the autism community you profit from and take a hard look at what we really need.


By Matt Carey

comment on: When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?

1 May

Having just discussed a study on what happens after autism “recovery” it may be worth taking a look at another study that just came out this week. This study isn’t yet published but was presented at a conference:

When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?

The abstract is below, but in this study group there were significant gains in a subgroup and a loss of ASD diagnosis. The subgroup had much less intellectual disability on follow up.

And they also had a number of other disabilities and support needs. Most still had some diagnosis, if not ASD. Most were still getting some level of extra support in school.

BACKGROUND: It has been documented that some children with early diagnosis of Autism Spectrum Disorder (ASD) do not meet criteria for the diagnosis at a later age. It is unclear, however, if deficits remain after ASD symptomatology resolves.
OBJECTIVE: To characterize residual learning, cognitive, emotional/behavioral diagnoses and educational needs of a group of children with early ASD diagnosis that resolved.
DESIGN/METHODS: Review of 38 children diagnosed with ASD at a University-affiliated inner-city early intervention program 2003-2013 who had follow up evaluation indicating resolution of the original ASD diagnosis. The group represents 7% of the 569 children diagnosed with ASD by the program during this period. Original and follow up diagnoses were made by an experienced multidisciplinary team based on DSM-IV criteria, Childhood Autism Rating Scale(CARS) and/or the Autism Diagnostic Observation Schedule(ADOS). All children had re-evaluation an average of 4 years later. Initial cognitive level was based on the Bayley, and follow up on WPPSI, WISC, or Stanford Binet. Data collected included: demographics, cognitive level, CARS, diagnoses and services originally and at follow up.
RESULTS: Mean age at initial diagnosis 2.6±0.9y and at follow up 6.4±2.8y. 80% male; 44% Hispanic, 36% Caucasian, 10% African American; 46% had Medicaid. Mean initial CARS 32±3 and at follow up 25±4. The initial ADOS (21/38) categorized 29% as autism and 67% ASD and was negative at follow up when available (23/38). On initial cognitive testing (29/38): 33% with intellectual disability, 23% borderline, 44% average. At follow up (33/38): 6% borderline, the rest average. At follow up, 68% had language/learning disability, 49% externalizing problems (Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Disruptive Behavior Disorder), 24% internalizing problems (mood, anxiety, OCD, selective mutism), 5% significant mental health diagnosis (psychosis.nos), and 8% warranted no diagnoses. 26% were in mainstream academic settings without support and 13% with support, 29% in integrated settings, and 21% in self-contained classes.
CONCLUSIONS: When an early ASD diagnosis resolves, at least in the early years, there are often learning and emotional/behavioral diagnoses that remain. Understanding the full range of possible outcomes is important for parents, clinicians, and the educational system.


By Matt Carey

Autism Speaks:  The results of this research are clear: Vaccines do not cause autism…but doesn’t let that statement stand alone.

26 Mar

Autism Speaks has come out with some very strong statements about autism and vaccines.  And the back peddled. 

First, here is a statement by Robert Ring, Chief Science Officer:

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.

Rob Ring
Chief Science Officer, Autism Speaks

 
In the past Autism Speaks had been sympathetic towards the idea that vaccines cause autism.  More than sympathetic, some would say.  Such a clear statement as above would have been unthinkable from Autism Speaks only a few years ago.
I wish they had made these statements earlier, but I am glad they are making these statements now.  The vaccine hypothesis has been the most damaging idea in autism since the refrigerator mother theory.  With Autism Speaks position as a well known autism organization, perhaps even fewer families will get caught in the vaccines-cause-autism trap in the future.Here’s the way the Autism Speaks vaccines and autism page looked just last year.  It includes many problematic statements and concludes: “A list of publications that used VAERS information to study associations with autism can be found here“.  “Here” is a link to pubmed with the search terms “vaers” and “autism”.  No surprise, it’s a list that is padded out by works by Mark and David Geier.  The Geiers have been performing poor research for years and have been discussed here at Left Brain/Right Brain many times.


The above statement by Mr. Ring was picked up by the press in February as it was so clear.
Next, Bob Wright, co-founder of Autism Speaks:
 

Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually  made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.

Bob Wright
Co-founder, Autism Speaks

It’s a fairly stilted paragraph in my read.  It comes across as though Mr. Wright is trying to appear to ride the fence while at the same time pulling back dramatically from the clear statement by Mr. Ring.  Scientific research has not directly connected autism to vaccines?

Even with that, I can’t imagine that admitting that vaccines are “important” will go over well in some circles.  Close circles.  Even “important” is to positive a word for some.  But, seriously, here we have an invention that has saved more lives that possibly any other in medical history and we get “important”?

Yes, Mr. Wright, efforts must be made to educate parents about vaccine safety.  That’s what your chief science officer did.  Sadly, you can’t let Autism Speaks be a science led organization.

By Matt Carey

Note: I accidentally published an early draft of this article yesterday.