Tag Archives: 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

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More California Advicacy Needed: take 20 seconds to protect services

22 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

Yes, this is a repeat of an article posted over the weekend. But weekends get low traffic and we need to keep this effort moving forward. And I am adding the message I sent my legislators below.

As a citizen (born here!) of California, I made a promise to disabled Californians that I would help support them. I do this with my taxes and have for years.

Now that I have a disabled child, I see that the level of support we offer has been low and recently has been diminishing.

We Californians made a promise, we need to keep it.

I am extremely disappointed with the Legislature for caving in to Governor Brown and passing a budget with not one dime to stop the deterioration of our developmental services.

Please do much, much better in the special legislative session. Give the developmental disability community the emergency 10% across-the-board funding increase we need starting NOW. Anything less won’t stop the service system from collapsing, just slow it down.

And please, don’t pass any more unfunded mandates on our community service providers. When you vote on Senate Bill 3 to raise the minimum wage and any other bills to make our providers spend more, insist that the state cover the full costs to prevent the loss of ever more of our services.

The people who take the front lines in supporting our disabled have one of the most demanding jobs in our State. I started out on the minimum wage and know the limitations of it. I’m support an increase.

Be compassionate with the minimum wage, but understand that we have to realize that this will impact our most vulnerable citizens.

Respectfully Submitted,

Matthew J. Carey

More California Advicacy Needed: take 20 seconds to protect services

21 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed 

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

‘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

Is Andrew Wakefield’s Strategic Autism Initiative failing?

3 Mar

When Andrew Wakefield left Thoughtful House he set up a charity, the Strategic Autism Initiative.  Interestingly even now, years after it was founded, it appears to have no website or Facebook page.  What it does have is tax forms because every charity must make those public.   Last year when I looked these tax forms, a few points became apparent.  Most of the money the SAI had taken in (58%) had gone to salaries, with the lion’s share of that going to Mr. Wakefield himself.  In 2012 more money was spent on salaries that was taken in.  SAI appears to have two employees, Andrew Wakefield and Terri Arranga.  Here are the contributions to the SAI, Mr. Wakefield’s salary and Ms. Arranga’s salary for the years 2010, 2011, 2012.

SAI contributions and salaries

And here are the tax forms:

Strategic Autism Initiative 2010 tax form
Strategic Autism Initiative 2011 tax form
Strategic Autism Initiative 2012 tax form

It is worth noting that the SAI was formed towards the end of 2010, hence the low salaries for that year.

Donations were down dramatically from 2011 to 2012 leaving one to wonder: what would 2013 bring?  Did the downward trend continue? Well, here’s the 2013 tax form:

Strategic Autism Initiative 2013 tax form.

Gross receipts: $50,498, down from $113,501 for tax year 2012.  A drop of over 50%.  The SAI ran a deficit of $97,514, nearly twice what they took in.  Mr. Wakefield took no salary, Teri Arranga only $5,000.  The SAI only had $21,396 in assets at the end of the year.

In short: the SAI appears to be failing. OK, in terms of benefit to the autism communities, the SAI has continually failed.

SAI 2013 form 990

Below are the “program service accomplishments” for the SAI in 2012 and 2013.  Program services are the heart of what a charity is doing.  Well, a standard charity.  That said, ignore the money amounts listed and tell me if you can see any difference in the text.  It looks to me like they copy and pasted the accomplishments from 2012 into 2013.  If I wrote the same accomplishments one year to the next, my management would likely let me go for accomplishing nothing in a year.

SAI 2012 program services SAI 2013 program services

This tax form–the most recent one available–is from 2013.  We will have to wait for the 2014 form but if this trend continued, the SAI is either failing or has failed as an organization.

By Matt Carey