Children with Autism Deserve Education, but I don’t support C.A.D.E.

17 Jun

There is a charity called “Children with Autism Deserve Education“. C.A.D.E or CADE for short. I ran across them a few years ago and saw some expenses in their tax forms that I felt were, let’s say, interesting. So they stuck in my mind and I decided recently to check into them again.

The name suggests a strong focus on education. I know many who will take issue with the use of “with” autism. That aside, helping autistic kids get access to education is a good thing. The vast majority of the money I donate to charity goes to exactly that cause–providing education opportunity for autistic kids.

The tax records indicate that C.A.D.E. spends a lot of money on non educational projects. On alternative medicine, for example. It looks like they’ve spent money on vaccines-cause-autism research. And if I were donating money just based on the name of the org, I’d not be happy with that.

To be clear, C.A.D.E. is public about their support for non educational projects. That “medical interventions” and research into causes are part of their agenda.

Before we dive into the details of where money is spent, let’s take a look at how they present themselves to the public. If one goes to the C.A.D.E. website and checks the “about” page, the first thing one sees is this:

About C.A.D.E.
Helping Children With Autism Reach Their Full Potential Through Financial Support For Evidence-Based Education And Therapy.

More and more children in the United States are diagnosed with autism. In fact, 1 in every 59 children was identified with autism spectrum disorder in 2014—up from 1 in 150 in the year 2000.

While opportunities for high-quality therapy and educational resources are increasing to account for this growing prevalence, intensive treatments are often well beyond a family’s financial means and many public schools don’t have the resources to provide them.

According to a 2014 study, the total lifetime cost of supporting an individual with autism is an astonishing $1.4 million in the United States. If an intellectual disability is also present, the total rises even more to $2.4 million. Education alone can cost a family an extra $8,600 per year.

We Believe That Children With Autism Deserve To Obtain The Most Effective Means Of Education.
C.A.D.E. Exists To Help Them Access It.

Through grants, C.A.D.E. helps fund evidence-based education, therapy and medical interventions for children with autism that don’t have the financial resources. Since 2014, C.A.D.E. has provided more than $500,000 in financial support to families in Minnesota—helping kids reach their full potential to live healthy, happy, productive lives.

From my perspective, this sounded reasonable right up the the phrase “medical interventions”. Education is a worthy goal. Therapy can include speech and language therapy, for example.

“Medical interventions” tells me that they are probably supporting alternative medicine. Many in the autism community promote alt-med and this is a common way that they phrase it when trying to seem more legitimate. But a casual reader might not realize that this phrase opens the door to donations being spent on “treatments” that are generally considered unproven or ineffective.

But keep reading the about page and towards the bottom of the page you find:

Our founders, board and volunteers have personal family experience with autism, and are deeply committed to ensuring that children are able to access the education and medical treatments they need to live healthy lives—as well as supporting organizations exploring the causes of and interventions for this epidemic.

So, yes, they are making it public that the money donated will not all go towards education. But consider further the phrase “supporting organizations exploring the causes of and interventions for this epidemic” sounds like the usual code in the autism parent community for “supporting research which tries to support the idea (failed idea) that vaccines cause autism”.

Two questions come to my mind when I read this. First, are they actually spending money on vaccines/autism research. Second, would they lose donors if this were made more clear in their public statements? Would, say, “Children with Autism Deserve Education and to be subjected to Alternative Medicine” get the same level of donations?

I am particularly suspicious of C.A.D.E. because I know that one of the board members is Jennifer Larson. Ms. Larson is prominent in the “autism is a vaccine epidemic” and the alternative medicine communities. She owns at least two businesses that provide alternative medical services (the Holland Center and Minnesota Hyperbaric). She donated $40k to former congressional representative and committee chairman Darryl Issa. At that time he was hosting hearings on vaccines and autism. She also founded the tiny Minnesota based “Canary Party“.An early version of the Canary Party’s website states:

American children are over vaccinated and over medicated, over fed, undernourished and have record levels of chronic illness and developmental delay.

Emphasis added.

We can get more information from the public tax records. The most recent tax year for which I can get records (tax forms for charities are public record) is 2017. Here’s their tax form for 2017. More specifically, here’s the schedule O for 2017. Schedule O is where charities list “grants and similar amounts paid”. It’s where you can find a lot about where they are spending their money, aside from operating expenses and salaries and the like.

Let’s take a look at the schedule O entries sorted largest grant to smallest:

First we have “family assistance for medical and therapy paid directly to the provider”. Said provider is the Holland Biomedical Clinic. And they note that the Holland Biomedical Clinic is owned by a board member. Which appears to be Jennifer Larson. The Holland Center provides both ABA (which can be considered educational) and alternative medical (biomedical) treatment. This entry specifically says “Holland Biomedical Clinic”. So my guess is that this wasn’t for ABA. To my knowledge, the Holland Center is a for profit business, not another charity.

This was the largest grant given out this year by C.A.D.E.: $15,282.

Next we have a grant for $10,000 to Ken Stoller, M.D. as “Family assistance for medical and therapy paid directly to provider”. Ken Stoller is well known in the alt-med and anti-vaccine communities. It seems odd to me that the amount is an even $10,000. Odd as in, did the the bills for a family actually come out to an even $10k? Even more odd that a doctor in San Francisco is getting a grant I thought were for local families in Minnesota. The famous name alt-med autism doctors do get patients traveling to see them. We don’t know what medical services were purportedly provided for this grant, but it seems unlikely that he could provide something not available in Minnesota. So, the question in my mind was whether this was a specific grant for specific families, or was this some sort of general support for Dr. Stoller?

The next “family assistance for medical and therapy paid directly to the provider” is to the Lovaas Institute for $5,390. This would be on target for the C.A.D.E mission, as the Lovass Institute is a provider of ABA services.

Another “Family assistance for medical and therapy paid directly to provider” is to “Grantee Name: Minnesota Hyperbaric. Grantee relationship: none.” Amount was $4,000. Minnesota Hyperbaric is, I believe, a business owned by Jennifer Larson (board member of C.A.D.E.) and housed within the same Holland Center noted above. Which if true would make the “grantee relationship: none” statement a bit problematic.

There is a $3,000 entry for “family assistance for medical and therapy paid directly to the provider” where the provider is listed as “Laidas”. I can not find who “Laidas” may be. I wonder if this is somehow a misspelling for Lovaas?

Next is Autism Recovery Foundation. Two entries for $2,000 total. The Autism Recovery Foundation is primarily focused on ABA. Yes, there are those who oppose ABA, but this is, in my opinion, spending funds on education. Note that Jennifer Larson is on the board. These appear to be described elsewhere in the tax form as “DIRECT SUPPORT TO ORGANIZATIONS THAT HELP FUND EDUCATION AND AWARENESS OF TREATMENT OPTIONS FOR AUTISM.”

Another “family assistance for medical and therapy paid directly to the provider” grant was paid to James Neubrander, M.D. for $1,410. Dr. Neubrander is an alt-med practitioner in New Jersey.

By the way, take a moment and check out his website. Watch the images that flash by and read the messages. It’s not pleasant at all.

The New Bridge Clinic received a grant for “family assistance for medical and therapy paid directly to the provider” in the amount of $1,190. I believe that is this clinic, which is another provider of alternative medical treatments. This is not educational.

Lastly we have “family assistance” paying rent for a family in need. Paid directly to Chohan Properties. For $1,180. While not educational, I wouldn’t have a problem with this.

A quick summary of the grants which appear to me to be for alternative medicine providers:
Holland Biomedical: $15,282
Dr. Ken Stoller (California): $10,000
Minnesota Hyperbaric: $4,000
Dr. Neubrander (New Jersey): $1,410
New Bridge Clinic: $1,180.

The total for Schedule O is $43,452
The amount paid for alternative medical providers appears to me to be $31,882. Or about 72% of the total grants.

72%

I would be very unhappy were I donor and found that out. It’s not illegal. It is, in my opinion, misleading. I’d think an org named “Children with Education Deserve Education” would be spending my donations on, well, education.

All the above is just for tax year 2017, the most recent where the information is publicly available. What about the other years? I went through the tax forms I could find going back to 2010. Here’s a summary table:

Who are they giving money to? Here are the top 10 projects, by money committed, from what I can see:

1) $56,000: The Autism Treatment Foundation of Minnesota, which appears to be this organization. Jennifer Larson is currently on the board. This org supports ABA for autism, and would be considered on target for “education”. From what I could find this appears to be something like a lobbying organization.

2) $22,000: Generature Rescue. Widely considered an anti vaccine organization. I’m unaware of any education projects they’ve been involved in. They are mostly involved in promoting the failed idea that vaccines cause autism and also promoting alternative medicine for autism. However, it struck me that in 2010 Generation Rescue made a big ($100k) donation to Andrew Wakefield’s “Strategic Autism Initiative” (Mr.Wakefield was the top in Time Magazine’s list of research frauds). In my opinion the SAI was set up to provide support for Mr. Wakefield after his ouster from Thoughtful House. This raises the question in my mind–did C.A.D.E. send money to Generation Rescue as a way of providing funds to Mr. Wakefield? Jennifer Larson is a known supporter of Mr. Wakefield.

3) $19,678: University of Northern Iowa. researchers DeSoto and Hitlan at the University were prominent in the “vaccines cause autism” scene for a few years. The work was poor in my opinion. Prof. DeSoto lists $80k in grants from C.A.D.E. for “Study of Autism among Somali Immigrants in MPLS, MN Area.” Her vitae does not list any publications. There was great interest from the anti-vaccine community in the Minnesota Somali community. Besides apparently accomplishing nothing, this expense by C.A.D.E. appears to have nothing to do with education.

4) $15,282: Holland Biomedical Clinic. This is reportedly owned by Jennifer Larson. The clinic offers alternative medical approaches. An initial visit can run $995, and alternative medicine is rarely covered by insurance.

5) Autism Recovery Foundation. Same address as the Autism Treatment Foundation of Minnesota. ABA based. Would be on target for donations to “educational” orgs, in my option.

6) $12,102. Unnamed medical therapy. Unclear what this was spent on, although it’s a good guess it was alternative medicine.

7) $10,000. Autism Resource Network. Looks like it was a store (autismshop.com). Which had a leaning towards the failed “vaccines-cause-autism” idea.

8) $10,000: Dr. Ken Stoller. Discussed above. Dr. Stoller is well known in the anti-vaccine community. And is in California, not MN.

9) $9,380: The Holland Center. Discussed above. Business reportedly owned by Jennifer Larson. Largely ABA focused, but also houses the Holland Biomedical Clinic and Minnesota Hyperbaric. One of the entries was for iPads. Why they were distributed through Ms. Larson’s business rather than directly is unclear.

10) $7,661: iPad purchase. iPads are often used as alternative communication devices and otherwise educational devices by people with disabilities.

There are a lot of expenses above which, again, I wouldn’t be expecting on donating to a charity calling itself “Children with Autism Deserve Education”.

One last comment. Above you will find this quote from C.A.D.E.: “Since 2014, C.A.D.E. has provided more than $500,000 in financial support to families in Minnesota—helping kids reach their full potential to live healthy, happy, productive lives.” I find that hard to believe. I count about $112k spent on program expenses from 2014-2017. So unless they spent a lot more money in the past 2 years, $500,000 seems like much more money than they’ve spent. Perhaps I’m missing something in the tax documents. I’ll provide them below.

C.A.D.E. fundraises with a run (the Autism5k) and also golf events.

One last topic is interesting here. Here’s a copy of an older form they used to apply for their grants. The CADE Medical & Therapy Grant Application. They specify some interesting requirements:

“These grants are for CADE approved physicians & CADE approved therapy programs.”

“I understand that my child is required to follow the GF/CF diet or SCD diet for the 90-day grant period if the medical grant is awarded and the diet is recommended”.

“I understand that an approved Doctor will be assigned to my child and that I have no choice in this matter and cannot change the assigned doctor. This doctor will be a specially trained for autism. ”

“If you are chosen for the CADE Medical or Therapy grant, you agree to the following:” which includes: “Implement ASD diet such as GF/CF or SCD for the medical grant ” and “Document the child’s progress through a daily journal and pre and post photographs or a Flip video camera that will be provided if needed.”

First off, keep in mind that Jennifer Larson also helps run an organization called “HealthChoice.org”. Given that, I find the lack of choice in the above quote very ironic. You must follow a diet for 90 days. One must follow the doctor’s recommendation, even if one disagrees. The doctor is ” assigned to my child and that I have no choice in this matter and cannot change the assigned doctor”

Yeah, that’s health choice.

Second, they ask for a lot of information. Including one has to keep a log and take pictures/videos. I would be very worried if I were to see such an application that the org was thinking of some sort of study based on the kids going through the grant program. That would be highly unethical.

Under “Disclaimer” the application states:

If you are chosen for the CADE Medical or Therapy grant, you agree to the following:
• Implement ASD diet such as GF/CF or SCD for the medical grant
• Dropping out of the program once selected will make you liable for the following:
1. All postage costs
2. The fee(s) of 2(two) Medical visits (estimated at $750.00)
• Document the child’s progress through a daily journal and pre and post photographs or a Flip video camera that will be provided if needed. 

All dollars for therapy grants go directly to the provider.

So, where the application previously stated that a diet is required if “recommended”, here the parent is accepting that it they will implement a diet. And, let’s say you think the medical professional isn’t working out for your kid, and/or the diet isn’t helping (or is even bad) for your kid. You get to pay back $750. Remember, parents are selected based on need. So $750 (which by the language reads as though it could be assessed even if you didn’t actually go to one or both of the visits) is possibly enough to force a parent to keep his/her kid in the program.

And, as we saw above, sometimes the grants are paid to clinics run by one of C.A.D.E.’s leadership.

As I titled the article, I believe strongly in doing more to provide better educational opportunities for autistics. But after going through all the above research, I wouldn’t send any of my money to C.A.D.E.. Sadly, this makes me wary of most charities. Especially small charities where it’s unlikely that there is much oversight.

Below are the tax forms for years 2010 to 2017 if you wish to check for yourself. If you find any mistakes in what I reported above, please let me know.

CADE_2017
CADE_2016
CADE_2015
CADE_2014
CADE_2013
CADE_2012
CADE_2011
CADE_2010

By Matt Carey

It is time to renew the Autism CARES Act

21 May

The Autism CARES Act (Autism Collaboration, Accountability, Research, Education, and Support Act of 2019) has been introduced in the House of Representatives and the Senate. The existing Autism CARES Act will expire this year, so a new bill is needed to continue the work.

Autism CARES is good for the autism communities. Autism CARES continues the government’s focus on funding autism research and coordinating research with nongovernmental groups. This work has been ongoing since the Combating Autism Act was enacted in 2006.

The bill has yet to come up for a vote. It has been gaining sponsors (85 in the House and 22 in the Senate). My senators are not yet cosponsors of the bill, so I sent them messages urging them to do so. It’s easy. You can find your House representative here and your Senator here.

The text of the bill can be found in the link: H.R.1058 – Autism CARES Act of 2019. It’s basically a continuation and update of the existing bill–which as I noted above expires this year.

If you are wondering what the bill does, the current law states (among many other things):

The Director of NIH (in this section referred to as the “Director”) shall, subject to the availability of appropriations, expand, intensify, and coordinate the activities of the National Institutes of Health with respect to research on autism spectrum disorder, including basic and clinical research in fields including pathology, developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology, and toxicology. Such research shall investigate the cause (including possible environmental causes), diagnosis or rule out, early detection, prevention, services, supports, intervention, and treatment of autism spectrum disorder.

The current law also authorizes appropriations. Which means Congress says they are allowed to set aside a lot of money ($190M) for autism research, but doesn’t force Congress to actually put that in the budget. Still, it’s a lot better than most of the disability or disease communities have as a commitment.

Let me put that another way–in legislative language Autism CARES is a single disease specific bill. Leave aside the term “disease”. It’s a bill that supports a single community. Congress has long been pushing to move away from that. Autism has kept this status even while Congress has moved to restrict it. The way to insure that we keep this in place is to act. Let your legislators know it is time to support Autism CARES.


By Matt Carey

Age of Autism financial documents, are they taking in less money?

16 May

A few years back the Age of Autism converted from a business to a nonprofit. That means we get some information on their financial status. As a nonprofit, their tax forms become public. Nonprofits file IRS form 990’s and those are hosted by various providers online.

The most recent informaiton we can get is for tax year 2018, according to this IRS website, the Age of Autism blog filed a “e-Postcard” instead of a form. Per the IRS this means they are receiving less than $50k in a year:

Organizations who have filed a 990-N (e-Postcard) annual electronic notice. Most small organizations that receive less than $50,000 fall into this category.

Here’s a screenshot from the IRS (click to enlarge):

So we don’t know how much they brought in, but it appears to be less than $50k. The thing is, the tax forms available for 2015 (here) and 2016 (here) showed AoA bringing in about $100k a year.

The natural questions are: is this drop in revenue real and, if so, why did it happen?

If one checks the Age of Autism blog today, one finds that there are three sponsors listed in a sidebar for the website. My recollection is that in the past sponsors paid about $15k per year. Here’s a screenshot, for some reason the actual icons for two of them don’t come through on my browser. (click to enlarge):

When I click on the icons I find that the three sponsors are (a) HealthChoice.org, (b) The Canary Party and (c) The Holland Center. HealthChoice and The Canary Party are, in my view, basically the same people. One listed as a political party and the other is a nonprofit. Both are run by Jennifer Larson and Mark Blaxill (Blaxill has been associated with the Age of Autism for many years). The Holland Center is a nonprofit run by Jennifer Larson, if memory serves.

Which is to say, the Age of Autism has basically one group of people sponsoring them.

Years back I once did a calculation of how much the Age of Autism brought in a year, and it worked out to about $100k/year, or a bit more. I’ll try to find that article. Back then they had more sponsors and also had advertisements

I checked some dates in the wayback machine (internet archive) and found that for the date I checked in 2016, AoA had 5 sponsors:

In

In 2015, they had 7 (some had larger icons, which may have meant higher paying sponsorship?):

Assuming $15k/year per sponsor, going from 7 to 3 sponsors could mean a loss of $60k in annual revenue.

Checking the wayback machine again, the ads were a significant source of revenue with this one type being $200/week. That seems like a lot more than I’d think they could pull in with ads.

I clicked a date in 2015 by random and there were 3 ads going on that day. That would mean possibly $600/week, $31,200/year.

One thing I find interesting in the list of sponsors is the lack of Generation Rescue as a sponsor. I recall that AoA started as the “Rescue Post“, “brought to you by Generation Rescue”. Perhaps Generation Rescue is supporting AoA in another way?

The tax forms tell us that Dan Olmsted was paid $26k in tax year 2015, and $39K in tax year 2016. Kim Rossi (then Kim Stagliano) has stated that she was hired by JB Handley (if memory serves) to work at the blog. A salary for her is not listed. There are entries for “contract services” in the amounts of $36k (2015) and $37,422 (2016). Some or all of that might have been to pay her for her efforts at the blog.

These are not high incomes. They are, however, incomes. People paid to, well, put out a junk blog that spreads misinformation about vaccines and stigmatizes autistics. Compared to my income from blogging (zero), these incomes are significant.

One must speculate as to why the Age of Autism blog may be losing revenue. My own speculations include:

1) Ad revenue down as blog lose traffic to Facebook and other social media.
2) Ad revenue down as even the credulous advertisers on AoA want less exposure to the clearly anti-vaccine message
3) Dan Olmsted, who passed away a few years ago, may just have been better at the business end. He could have been better at keeping sponsors and advertisers.
4) Some factionalization in the anti-vaccine/autism community. The current sponsors are all tied to Mark Blaxill, who is still listed as an editor of the Age of Autism blog.

There are probably other reasons, and it’s entirely possible the above reasons are minor or not applicable at all.

By Matt Carey

Trump is only the latest charlatan to use the anti-vaccine community

15 May

When Donald Trump was running for president (has he ever stopped running for president and started governing?) the anti-vaccine community threw full support behind him. They were excited because here was a candidate who publicly accepted and promoted the fake and damaging idea that vaccines cause autism.

Before running, Trump supported the idea that vaccines cause autism in twitter. During the campaign he stated his support for this failed idea clearly in a debate. So it’s no wonder that the anti-vaccine community backed him.

Then, a few weeks ago Trump said this, in response to the recent measles outbreak:

“They have to get the shots. The vaccinations are so important. This is really going around now. They have to get their shots.”

That didn’t sit well with the various anti-vaccine groups. But allow me to take a moment to look at the viewpoint during the campaign. In specific, think about this–while campaigning did Donald Trump appear to be a candidate who would do well by the disability communities? Would someone like my kid benefit from a Trump presidency?

Clearly not. It’s not even a close question. And yet, even autism-parent anti-vaccine activists were pro Trump. Even though life would be harder for their kids after Trump. Even though there would be less support for their kids. Even though Trump would heighten stigma of disability.

One would think that parents of disabled children would run to vote for anyone else. Anyone who even paid lip service to supporting their children.

But the anti-vaccine autism parents didn’t. And I wasn’t surprised.

These are the same parents who:

chelated their kids (even though autism looks nothing like mercury intoxication, could cause harm and in at least one case did cause death)

dumped synthetic chemicals mislabeled as as “supplement” on their kids’ gluten free waffles.

promoted bleach enemas for “treating” autism

injected children with filtered urine

chemical castration of disabled children as a purported “cure”

The list goes on and on. But what do all of the above “therapies” have in common? OK, what do they have in common besides being bogus? They are all promoted by people who say vaccines cause autism.

So I wasn’t the least bit surprised that the anti-vaccine autism-parent community backed Trump. Not for a moment.

Remember back during the campaign when JB Handley (anti-vaccine activist founder of the Age of Autism blog) wrote Trumps Stands with my Son, I Stand with Trump

In it he stated:

But, I will make the point to you anyway: Donald Trump is the best thing that has happened to our kids in a very long time and I hope we can all lay down our issues and stand with him.

Because Handley is a “one issue voter” and that issue is the (failed) idea that vaccines cause autism

Did it matter that Trump had no plan for supporting people with disabilities?

Did it matter that Trump openly mocked people with disabilities?

Did it matter that Trump didn’t have the backbone to actually apologize for such a crude attack, stigmatizing disability?

Did it matter that Trump was pushing to remove the Affordable Care Act, which has allowed many autistics to get medical insurance? As part of that push Trump wanted to remove coverage for people with pre-existing conditions? One would think that pre-existing condition coverage would be a priority for Handley and the anti-vaccine community.

Did it matter that Trump was planning to gut funding for support services for people with disabilities?

Or, to put it simply, did the anti-vaccine community actually put people with disabilities in into their decision to support Trump? No. Not even close.

Trump said vaccines cause autism. And with that Trump got their vote.

Did Trump ever stand with any autistic? Anyone’s child? Anyone’s son? Nope. Trump stood with the anti-vaccine activists themselves.

And now Trump has abandoned them. It may only be for now. But the anti-vaccine community isn’t large enough and the sentiment against them is rising.

Here’s a response to Trump from Kim Rossi at the Age of Autism blog:

From an MSNBC report yesterday: President Donald Trump commented on the recent measles outbreaks, saying that people “have to get their shots” and called vaccinations “important.”

Will the First Lady share her children’s vaccination status, please? We would have like to have seen the Obama girls’ records too. No partisanship here at AofA. Both sides of a rotten apple with a pharma profit core.

Trump is now part of the “rotten apple with a Pharma profit core”.

No partisanship, eh Kim? I guess you finally realized that being a charity (the Age of Autism converted to a charity a few years ago–before the election) actually means having to follow the laws imposed on charities. Like abandoning the clear partisanship you showed in promoting Trump’s candidacy.

So Kim…JB…and the rest of you: Trump fooled you. Did you stop for a moment and think, “wow, I can be fooled. I wonder who else has fooled me in the past and who is still fooling me now?”

I doubt it. And that’s too bad. You all could do a lot to undo the harm you’ve caused.


By Matt Carey

Why I don’t like “Happy Mother’s Day: Mothers Lie”

13 May

The essay is structured as “you were pregnant. You had hopes and dreams. Then you got a shock–your kid wasn’t what you hoped for.”

Why do we keep telling parents that story? The only reason there is a shock is because we don’t remind parents that disability is real. And that the dream lives on–having a family, loving a child. It isn’t disloyal to the parents or the child to accept the possibility that a child will be born or acquire a disability. And it would help child and parents if we as a people did this more.

A list I joined a long time ago is run by someone very active in the anti-vaccine/fake-cure movement. And every year I get sent the “inspirational” essay: Happy Mother’s Day: Mothers Lie. I truly dislike that essay.

I’ll put it below.

The short version of why I dislike this essay has to do with this one phrase:

You didn’t volunteer for this

Let me add another phrase from the essay:

You’re a woman who doesn’t have time to step back and put things in perspective

I’m a father, not a mother, but allow me to use my own experience. Having a disabled child has forced me to put things in perspective. It took years, and help from a lot of people. Shan, I’m thinking of you and other parents, but mostly from adult autistics.

So, with all that time and help, here’s my perspective for our family. The truth of the matter is we did volunteer for this. “This” as in: we decided to have a child. Perspective means I’ve stripped this down to the basics. We volunteered to have a child. And we were lucky enough to get a child. We are lucky enough that our child is alive. I’m lucky my wife survived pregnancy. I wanted a child I could love. I wanted a child I could try to help find their own identity, their own way, their own life. To help them pursue happiness, on their own terms.

Ms. Borgman, I appreciate what you were trying to do with this piece. I really do. But a lot of parents never get past the “what I hoped for was…” phase. Hitting mothers with this every year doesn’t really help. In the autism community we see parents who never accept who their child is, and focus on who their child was “supposed” to be. What the parents hoped for. They focus much of their energy in anti-vaccine action, because they are convinced that autism is “vaccine injury”. They become targets for charlatans selling all sorts of fake and even abusive “therapies”, because they want to “recover” their child. Note the term: recover. They aren’t trying to treat a condition, they are trying to regain what they feel they have lost.

Believe me, I am in awe of mothers. My wife especially. She had a better perspective on disability before we had children than I had even after our child was diagnosed.

It’s great to hope and dream. I’ve never stopped. But we need to ground our future parents before diagnoses as to what to expect. And that acceptance is a very valid option. That being the parent of a disabled child is more challenging, but it doesn’t require a super power.

In my opinion our culture needs to reassess how we view and discuss disability. And how we view the hopes and responsibilities of starting a family. Here’s a simple example of what I mean–I did a quick search on the site for the famous book “what to expect when you are expecting”. I used the term “disability”. Here’s what I got:

Here’s what I noticed–the first two hits are for (1) having a child while disabled and (2) disability insurance for maternity leave. Only when we get to (3) are we seeing disability for the child. And this is under “first year”. We really need to be educating people about disability before pregnancy. During pregnancy. You can’t fully prepare for the news that your child is disabled. But, then again, you can’t fully prepare for life with any child. What you can do is do some preparation.

You may be thinking that I’m saying “don’t encourage parents to hope.” Far from it. But hope and acceptance are both good things.

Another way to look at it is this. The essay is structured as “you were pregnant. You had hopes and dreams. Then you got a shock–your kid wasn’t what you hoped for.”

Why do we keep telling parents that story? The only reason there is a shock is because we don’t remind parents that disability is real. And that the dream lives on–having a family, loving a child. It isn’t disloyal to the parents or the child to accept the possibility that a child will be born or acquire a disability. And it would help child and parents if we as a people did this more.

Here are the sorts of corrections I’d suggest. First this phrase:

“Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.”

Perhaps this version wouldn’t change your story that much?

Every Mother wants a baby. Full stop. Remember that, you wanted a baby. You hoped that your baby would be able to see, hear, run, jump and fire neurons by the billions. But you knew that your child might be disabled.

I would change the last paragraph from:

You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.

to something like:

You weren’t fully prepared for this. You are the mother. You are an advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.
But, most of all, you are a mother.

Actually, I’d probably not use “you’re a wonder”, but I did say I am in awe of mothers. So there’s that. But the whole “you’re a wonder” message makes expectant parents think, “maybe I’m not up to the task.”

I don’t usually like it when people tell me how to write, or what to write about. I’m not suggesting you rewrite. But perhaps take a look at what these changes do to the message. Let’s move away from our society’s ideal that it is somehow romantic to look back on when we were naive and ignorant about our children possibly being disabled. That leads to regret and holding on to a feeling of loss. And that leads some parents into a very bad place. It keeps some parents from ever accepting their child’s disability. Perhaps you don’t know, but there is a segment of the autism parent community that thinks acceptance is a bad thing. Boggles the mind, but it’s true.

If nothing else, I can say that it would have helped me a great deal if we had changed the message long ago. Before I had kids.


By Matt Carey

here’s the essay:

Happy Mother’s Day: Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.
The doctor’s words took your breath away.
It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn’t seem possible.
That didn’t run in your family.
Could this really be happening in your lifetime?

There’s no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you’re ordinary.
You snap, you bark, you bite.
You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling,
“Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack.
You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.

An autism parent’s gratitude to the Kennedys for speaking out

9 May

Kathleen Kennedy Townsend, Joseph P. Kennedy II, Meave Kennedy McKean: thank you. We in the disability community owe much to the Kennedy family. We don’t forget the gains in special education and other areas that the Kennedy family championed for us.

With that in mind, it’s been especially hard to watch Robert Kennedy Jr. spread vaccine misinformation. More, it’s been painful to see him use my community, the autism community, as his base and his weapon in his campaign.

I know it took courage to step forward and speak out against the misinformation your family member, Robert Kennedy Jr, has been spreading. Thank you.

For readers who are unaware, members of the Kennedy family wrote a piece published on Politico:

RFK Jr. Is Our Brother and Uncle. He’s Tragically Wrong About Vaccines.

Here’s a paragraph:

These tragic numbers are caused by the growing fear and mistrust of vaccines—amplified by internet doomsayers. Robert F. Kennedy Jr.—Joe and Kathleen’s brother and Maeve’s uncle—is part of this campaign to attack the institutions committed to reducing the tragedy of preventable infectious diseases. He has helped to spread dangerous misinformation over social media and is complicit in sowing distrust of the science behind vaccines.

To the Kennedys: I am a father. I have an autistic child. Robert Kennedy positions himself as an ally, a champion of parents like myself. Let me make this clear: Robert Kennedy does not speak for me. He does not speak for more than a few autism parents. He certainly doesn’t speak my son or other autistics. He has been part of the effort to weaponize fear of disability to frighten people about vaccines. As such, he has added to the stigma my son faces.

There is another aspect to this you may not be aware of: the anti-vaccine community is closely tied to the worst in the alternative medicine movement. Robert Kennedy regularly speaks at autism parent conventions where therapies that can only be called abusive are promoted as “cures for vaccine injury”. Mr. Kennedy could speak out against these therapies. He could stand up and make himself heard and stop this abuse. Instead, he has remained silent.

In a few weeks, Mr. Kennedy will once again be speaking at the Autism One convention in Chicago. Here are some of the therapies that have been promoted at Autism One:

Chemical Castration. Mr. Kennedy’s allies in promoting the failed idea that mercury in vaccines cause autism promoted an idea that Lupron could help remove mercury from the brain, somehow treating autism. Lupron shuts down the body’s production of sex hormones. It’s basically chemical castration. (See Disability Scoop: Chemical Castration Drug Peddled As Autism Treatment). Chemical castration of disabled youth, how can anyone not see this as abuse?

Bleach Enemas. Sounds so ridiculous that it couldn’t be true, right? But there are people, presenting at the same place as Robert Kennedy Jr, claiming that a bleach solution, either as a drink or an enema, can cure autism. Somehow this treats vaccine injury, in their logic. Disabled children are exposed to enough of this bleach (Chlorine Dioxide) that they pass the lining of their intestines. These are called “worms”. It’s abuse.

Unregulated stem cell transplants. Parents have been flying their children to foreign countries to have “stem cell” infusions. This is nothing short of medical experimentation.

Chelation. Mr. Kennedy’s main theme for years involved mercury from vaccines. When my son was first diagnosed, one couldn’t get into an online autism discussion without chelation coming up. Autistic children were misdiagnosed with “mercury poisoning” by various, frankly fraudulent, tests. These tests were used to justify chelation, without the supervision of actual toxicologists. These children were never mercury intoxicated. Animal studies have shown that chelation, applied when there is no intoxication, causes cognitive decline. Think of that, disabled children may have lost cognitive gains because people believed Robert Kennedy’s message.

The list goes on and on. “Autism as Vaccine Injury” is used to sell all sorts of fake and, sometimes, abusive therapies. And no one in the anti-vaccine community, and that includes Robert Kennedy Jr., stand up to counter this movement. Instead they accept these charlatans and frauds as allies. As long as vaccines are blamed, charlatans know they can stand up in places like Autism One and not hear criticism.

Robert Kennedy could have slowed or stopped these abuses. He could have shown courage. Instead he’s been using my community as a weapon in his attack on vaccines.

To the Kennedy family: I know this is tough to read. Believe me, if anything, I’ve downplayed the harm the “vaccines cause autism” message has caused to my community. You are the people who might be able to get Robert Kennedy Jr. to stand up and start correcting the damage he’s help inflict.


By Matt Carey

Today’s measles outbreak, brought to you by Generation Rescue and other anti-vaccine misinformation sources

1 May

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

–J.B. Handley. Founder of Generation Rescue and the Age of Autism Blog.
March 17, 2010

Kelli Ann Davis. Anyone remember that name? She was a spokesperson and political liaison (or something like that) for Generation Rescue back in the day. As in 10 years ago or so.

I’d be amazed if anyone actually remembered her name. It took me a while to remember her name, but I remembered her. She was a frequent commenter in online discussions on vaccines. News stories and blogs. She really liked to point out that there were pockets of under vaccinated people. Schools and communities with low vaccine uptakes. And there weren’t outbreaks of diseases. This, in her mind, seemed to be evidence that herd immunity was a fake idea. Worthy of scare quotes (“herd immunity”).

Here’s an example I dug up from the Age of Autism blog, circa 2009:

She stuck in my mind. She was so arrogant in her ignorance. So full of her self with her bad logic. And she was spreading misinformation.

I knew it was only a matter of time before the outbreaks did come. Before someone imported something like measles into one or more of these under-protected communities.

I won’t hold my breath waiting for her to come back and take responsibility. I won’t wait for Generation Rescue to accept its role in causing suffering. I won’t expect other purveyors of misinformation to show the backbone needed to admit a mistake.

I will admit I was wrong in one area–I worried that eventually the press would start to realize that a great deal of the misinformation campaign has been waged by a vocal minority of autism parents. That is why I remembered Kelli Ann. Not for the chance to one day say, “I told you so”. I knew that these outbreaks would come. The outbreaks would cause people to suffer, some to possibly endure lasting harm and, let’s hope this doesn’t happen, death. While slowing or blunting the harm from these inevitable outbreaks was a worthy goal in and of itself, I was worried that the autism community would take the blame for people like Kelli Ann. JB Handley. Jenny McCarthy.

I am grateful that this hasn’t happened. So far. But I also think it’s on us, autism parents, to call out the behavior of our own. We need to reduce the misinformation that comes from our community. Be it vaccine misinformation, disrespect of people with disabilities or spreading medical pseudoscience.


By Matt Carey

p.s. Yes, I realize that “anti-vaccination” and “misinformation source” are largely redundant.