So, you supposed champions of autistic minorities, why aren’t you commenting on the new autism prevalence report?

17 Nov

One of the first things I check when I see a new study on autism prevalence is how the prevalence varies among racial and ethnic sub populations. In the U.S., this usually means comparing autism rates among Caucasians to that among African Americans and Hispanics (the most reported minority groups). I am especially interested given that in the past year the groups that promote the failed notion that autism is a vaccine-induced-epidemic have tried to position themselves as champions of the African American community.

So with the new autism prevalence study out, I decided to check on what these various “champions” are saying. I look specifically because the reported autism prevalence estimate is slightly lower among African Americans and much lower among Hispanics.

AutPrevalence race-ethnicity

In case you want the conclusion–few of these groups seem to have even read the new study, and none of them have anything to say about the disparities among racial/ethnic communities.

And this is a shame. Under diagnosis means under-served autistics. It means autistics likely getting the wrong supports.

Here’s a non scientific survey of various groups and their reactions to the new autism prevalence study:

The Age of Autism blog has New Estimate 1 in 45 American Children Have Autism. There’s no evidence that whoever put this article up actually bothered to read the CDC report. Much less comment on the racial disparity reported.

This should shock Americans for two reasons. One, the sheer epidemic numbers of this life and demographic landscape altering diagnosis is appalling and unacceptable. Two, the CDC continues to prove its inability to keep track of American medical conditions and provide any measure of protection. Like school shootings, autism has continued to rage across the nation unabated. Cui bono? Not families. Not the children, many of whom are now young adults.

The article is just listed as “Posted by Age of Autism” but the wording is very characteristic of Kim Stagliano. Likening autism to schoo shootings that continue “to rage across the nation unabated” is very much in her style. It’s not a style I appreciate. My child is not like a school shooting, thank you very much Age of Autism, and you are doing zero to help and much to harm my child’s chances for a better life with your stigmatizing approach.

Focus for Health (formerly Focus Vaccines), the organization that funded the Brian Hooker “reanalysis” of the CDC data and the media campaign to try to create a controversy around the so-called link between the MMR and autism in African American boys? They have a confusing article “Do vaccines cause autism?” which doesn’t address the question of race/ethnicity at all.

“Dr. Bob” Sears, who recently claimed to speak for all autistic students in California posted a link to a TACA (Talk about Curing Autism) blog article. TACA gives little indication that they read he CDC study beyond the one number, and doesn’t address racial/ethnic disparities at all. The TACA article is titled Autism is now 1 in 45 – will anyone listen?. Hey, Lisa Akerman–Autism is STILL under diagnosed in the Hispanic community. When will you listen? And, “Dr. Bob”, gee thanks for cutting and pasting a link to someone else’s blog post. That’s going to make a change in our community. And by “our” I don’t include you.

Andrew Wakefield’s “Autism Media Channel” copied a link to an NBC article about the new study. Nothing more. Wakefield and his Autism Media Channel were the primary force in promoting the supposed controversy about the MMR vaccine and African American boys. Well, the autism prevalence is slightly lower in African Americans, Wakefield. And much lower in Hispanics. Do you care?

The self-named (and inaccurately named) National Vaccine Information Center is another group that only put a link to someone else on their facebook page. And, you guessed it, nothing about race/ethinic groups.

I don’t see anything on the Generation Rescue blog, but a short blurb on their Facebook page that, again, looks like they didn’t even read the study. Much less comment on under served communities.

OK, basically nothing so far. Let’s look at some of the smaller players in the vaccines-cause-autism arena. Like the “Thinking Mom’s Revolution”. Nothing on their Facebook page or their blog that I can see about the new prevalence numbers. So, naturally, nothing about under served communities. They do have a few FB posts asking people to take a survey (because an online survey only advertised to a skewed demographic is accurate, right?). The survey is calling asking if people want a congressional hearing on vaccines.

By Matt Carey

U.S. announces 2% autism rate. Again. And it’s dependent on a change in the way a survey is worded. Again.

17 Nov

Last week a study was released showing an autism “rate” in the U.S. of about 2% (an estimated prevalence of 2.24% to be exact). Luckily one of the best science journalists out there focuses a lot of her attention on autism and covered this story. I’m writing of course about Emily Willingham and her article Increase In Autism Diagnoses Not An Increase In Autism.

The study in question is Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey. The abstract is at the bottom for those interested.

While other articles are discussing the large “increase in autism”. Or, as in this Reuters article, US autism numbers soar in which we read what must be a confusing message to many:

The results reflect a near doubling in autism rates over the past three years, but the US Centers for Disease Control, which released the data last week, says the shift is largely due to a change in the way the survey was worded.

Here’s the thing, before I saw what the study was, I actually thought that the discussion was about this study: Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012. In that study, released in 2013, a 2% autism “rate” was announced. And that was a significant change from the previous survey data (using the National Survey of Children’s Health). And like previous estimates based on survey’s the change is at least due in large part to a change in the way the survey was presented to parents (I’m looking for a link to the discussion of the change in survey questions that affected the 2013 estimate, but there was a shift and it had a big impact).

Thankfully much of the media, and even Autism Speaks, are pointing out how this 2% figure doesn’t represent a “real” change in autism prevalence, but is largely dependent on the study methods. Others can be counted on to shout “epidemic” and ignore some of the key reasons why this doesn’t reflect a real increase.

Number 1 reason–the autism prevalence is basically the same for kids who were 3-10 and kids who were 11-17:


A real increase would show up as a higher prevalence for younger kids.

One thing we see is a decrease in disparity for autism prevalence by race/ethnicity. African Americans have a slightly lower autism prevalence (it’s unclear whether this is statistically significant or not), and Hispanics have a decidedly lower autism prevalence (1.49% vs. 2.55% for Caucasians). Which means we still have far to go to identify and bring services to all autistics. And it also means that the autism prevalence estimates will continue to rise as we do identify more in under diagnosed populations.

AutPrevalence race-ethnicity

But let’s focus on the important part of that–we still have a large under-diagnosed/under-served population and it is largely among Hispanics. We really need to be focusing more attention on remedying that situation.

Here is the abstract for the current study:

Objectives—The developmental disabilities questions in the 2014 National Health Interview Survey (NHIS) were changed from previous years, including
question reordering and a new approach to asking about autism spectrum disorder (ASD). This report examines survey-based estimates of the lifetime
prevalence of ASD, intellectual disability (ID), and any other developmental delay (other DD) following the inclusion of a standalone ASD question, the
inclusion of specific diagnoses in the ASD question, and the ASD question preceding the other DD question, and compares them with estimates from
previous years.

Methods—In NHIS, one child is randomly selected from each family to be the subject of detailed questions on health conditions, functional limitations, and
health care utilization. Parents are asked if a doctor or health professional had ever told them that their child had each of a series of developmental disabilities.
Prevalence estimates of ASD, ID, and other DD for children aged 3–17 years were calculated using data collected in 2011–2014.

Results—The estimated prevalence of ASD based on 2014 data was 2.24%, a significant increase from the estimated annualized prevalence of 1.25% based on
2011–2013 data. In contrast, the prevalence of other DD declined significantly from 4.84% based on 2011–2013 data to 3.57% based on 2014 data. The prevalence of ID did not significantly change from 2011–2013 (1.27%) to 2014 (1.10%). The prevalence of having any of the three conditions was constant across survey years.

Conclusions—The revised question ordering and new approach to asking about developmental disabilities in the 2014 NHIS likely affected the prevalence estimates of these conditions. In previous years, it is likely that some parents of children diagnosed with ASD reported this developmental disability as other DD instead of, or in addition to, ASD. Following these changes, the 2014 ASD estimate was more similar to ASD prevalence estimates from other sources.

By Matt Carey

Mr. Kennedy, if you know the science, why did you claim that the MMR vaccine contains mercury?

16 Nov

Robert Kennedy (son of Robert F. Kennedy) has been focused on reducing mercury exposure for some time. His advocacy against mercury led him to focus on vaccines (infant vaccines used to contain a mercury compound as a preservative). And, the main argument against mercury in vaccines is the (now totally failed) idea that mercury in vaccines causes autism.

It’s important to keep that autism is not his priority. It’s his tool to allege dangers of vaccines. He’s not out to help us out, but instead to use us to help him.

Add to this that he’s a lawyer, not a scientist and he’s from a very political family. Three are lawyers and politicians actually understand science. Mr Kennedy claims he is in that number (he’s “rabidly pro-science”), but in reality he either doesn’t understand the science or the facts are just be a political tool for him.

That Mr. Kennedy feels the need to instill in us the message that he understands science may stem from the fact that his first attempt at discussing autism and vaccines met with disaster. He published an article “deadly immunity” (because, you know, very pro-vaccine people use terms like “deadly immunity” to discuss vaccines, right?). This article was published both in Rolling Stone and In Salon’s Correcting our record, We’ve removed an explosive 2005 report by Robert F. Kennedy Jr. about autism and vaccines. Here’s why we read:

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged here) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

“…critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link”. Not exactly a ringing endorsement of Mr. Kennedy’s approach nor the “science” he still promotes.

One take a moment here to discuss Mr. Kennedy’s strong record of advocating for real changes that would benefit autistics. Or we could if there were such a record. Again, we aren’t his focus. We are his tool.

So, given this long introduction, what about the claim that that the MMR vaccine contains mercury? It is in this video Mr. Kennedy produced recently. And while it may seem like a small thing, it is a clear example of misunderstanding or ignoring simple facts in order to support his argument that mercury in vaccines cause autism. Mr. Kennedy is jumping on the controversy that Brian Hooker and Andrew Wakefield tried to make last year about the MMR vaccine.

Now for those who have a basic understanding of the science, one will immediately wonder, “why is Kennedy latching on to this MMR story when there is no mercury in the MMR vaccine?” Not only does the MMR vaccine not contain mercury, it can’t contain mercury. The MMR vaccine is a live virus vaccine. Mercury is a preservative; it’s specific purpose is to kill bacteria (mostly) and viruses.

Let’s leave out the other huge warning flags here–such as the current MMR controversy Wakefield and Hooker tried to create is based on a huge amount of misrepresentations. Let’s ignore that and ask, surely Mr. Kennedy wouldn’t claim that the MMR vaccine contains mercury, right? Because that would mean either he doesn’t care about the facts or doesn’t understand the facts. It would suggest that sticking to very simple facts is taking back seat to political advocacy.

Why care, one might ask? Politicians have been ignoring facts for millennia. I care beause of the harm Mr. Kennedy brings to my community. I care because he is be scaring parents, especially African American parents, needlessly and convincing them to avoid a vaccine which prevents three very serious diseases. But more, he’s instilling in a new community the guilt and shame that comes with belief in the vaccines-cause-autism idea.

Given that long intro, here’s the video where Mr. Kennedy sends out his message to the African American community:

You can jump right to the point I’m discussing (6:45 into the video).

“…it proved that these vaccines, these mercury containing vaccines particularly, were causing autism”

When he’s talking about the William Thompson story, he’s talking about this study, Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan atlanta. He’s talking about the MMR vaccine.

Again, the MMR doesn’t contain mercury. Never has. In fact, it can’t. And there’s no good reason why after all these years why Mr. Kennedy would not know this. In his book “Thimerosal, let the science speak”, Mr. Kennedy on two occasions (Kennedy MMR-not thimerosal 1 and Kennedy MMR-not thimerosal 1) notes that the MMR vaccine does not contain mercury.

Again, this may seem like a small thing–he got this fact wrong. So what?

There was a time when I thought that the leaders of the movements that promote the idea that vaccines cause autism were just misguided. Probably good, decent people who somehow got themselves to believe wrong ideas. It’s not that hard to believe in something false, and just because you are wrong doesn’t mean you are lying.

Well, in my opinion, that doesn’t describe Mr. Kennedy. And as I’ve noted, the consequences for my community are huge. And I don’t appreciate Mr. Kennedy what appears to be Mr. Kennedy using us as his tool.

By Matt Carey

With a new IACC meeting, there’s a chance to be heard. Send your comments now.

11 Nov

The Secretary of Health and Human Services has seated a new Interagency Autism Coordinating Committee (IACC). The committee is in place to coordinate Federal and private research efforts and to provide policy advice to the Secretary and Congress.

The Committee takes public comment in both oral (be present at the meeting) and written. This is from the meeting announcement:

Notification of intent to present oral comments: Monday, November 9, 2015 by 5:00 p.m. Eastern

Submission of written/electronic statement for oral comments: Tuesday, November 10, 2015 by 5:00 p.m. Eastern

Submission of written comments: Tuesday, November 10, 2015 by 5:00 p.m. Eastern

Please note: Written public comments and statements accompanying oral public comments should be sent to The NIMH Office of Autism Research Coordination (OARC) anticipates that written public comments received by 5:00 p.m. ET, Tuesday, November 10, 2015 will be presented to the Committee prior to the November 17th meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. EST, November 10, 2015 deadline through November 16, 2015 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. Please read the IACC Public Comment guidelines.

While on the last IACC, I pointed out that while oral comments were available on the website (through video), written comments were not. OARC responded and now written comments are posted to the IACC website. This was no small effort as Federal rules are different like privacy are different for comments that are made available on request vs. those that are posted like this.

All that aside, take a look at the comments. Ask yourself, do these represent your views? More, do they actually push for a better life for yourself or your loved one? I ask this because the groups that push the failed idea that vaccines are causing an autism epidemic are actually very good at getting comments submitted to the IACC.

I was a public member to the last IACC. I can tell you, we read all the comments. We took them seriously and I’m sure this Committee will as well.

This Committee has a lot of very important work to do. The Strategic Plan for autism research needs a full overhaul. The old one has basically expired–the goals were written with timelines that have already passed. There is also a requirement in the new law for a report on autistics transitioning from school to adulthood. Do you want that to include a strong emphasis on autistics who need high levels of support? Send comments. Do you want an emphasis on support in higher education? Send comments. If it’s important to you, it’s worth putting in a comment.

And, yes, I will be reminding you for future meetings as well.

But for now, put what you want the IACC to read into a message and email it to

The Committee members can’t represent the entire diversity that is in the autism communities. They need your input on what is important to you. And this is how you can do it.

By Matt Carey

Was the murder of Dustin Hicks committed by a biomed mom?

10 Nov

Let me start with some resources. Shannon Rosa of the Thinking Person’s Guide to Autism have done a good job in writing about resources for families. In particular, Parenting Kids With Disabilities: How to Get Through Tough Times. There are other resources out there as well. As Shannon wrote in a recent Facebook comment

Again: The solution **for this situation** is to spread the message that killing disabled people is unacceptable, and that parents have other choices. Here are some of those choices: -SR

Also, the Autistic Self Advocacy Network (ASAN) has an effort to stop such murders. One can find information about that at their Anti-Filicide Toolkit page.

With that long introduction, here’s the main article:

Recently I posted news here about another murder/suicide. The autistic youth, the victim, was Dustin Hicks. Usually when I write these stories I leave out the name of the mother. I do because many news stories focus on the mother, even to the point of not naming the victim. Consider yesterday’s news where they asked if this was a mercy killing. A possible mercy killing?

Dustin Hicks’ mother was named Nina Hicks. They lived in Georgia.

As it turns out, there was a mom in Georgia named Nina Hicks who also listed herself as “Dustin’s Mom” in online discussions. As one can see in the signature in this post left to the “open Georgia Autism Group”. On this list, we see that she is a proponent of so-called “biomedical” intervention approach. Here we see her promoting the Amy Yasko “protocol” (which, by the way, is nonsense):

I would also highly recommend your looking into the genetic testing offered by Dr. Amy Yasko. It takes a lot of the guess work out of biomedical interventions and addresses the underlying reasons why your kiddo cannot excrete toxins like his typically developing peers can. You can find info regarding the Yasko protocol on the two sites I’ve listed above. It’s a little extra $$ up front, but it will save lots of (precious) time and $$$ overall.

She appears to have petitioned on behalf of her son for compensation in the vaccine court (Court of Federal Claims). The decision states that the mother did not provide any medical opinion or medical record that autism was a vaccine injury. Simply put, she didn’t really put forth a case.

One might ask why bring all this up?

Because the culture that goes with the alternative-to-medicine approach and the vaccines-cause-autism movement is toxic. Yes, I know these groups feel some sort of ownership over the word “toxic” and will feel that it’s ironic that I use it here. But their culture has very toxic elements. Let me explain. Because this is exactly what many of us have been fighting against. And the murder of Dustin Hicks is exactly the sort of event we have tried to prevent.

First we have the toxic message, “your child is damaged. You did this by vaccinating him/her. Now it’s your job to fix him/her.” Think I’m exaggerating? Take a look at the introduction to Jenny McCarthy’s first autism book, “louder than words”. The introduction was written by DAN (Defeat Autism Now!) doctor Jerry Kartzinel:

“You broke him, now you fix him!” was the mandate given to me by my wife as we watched our fourth boy slip into the world of autism after receiving his first measles, mumps, andrubella (MMR) vaccine.

Further in the introduction, we read:

Autism, as I see it, steals the soul from the child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.

Let’s break this down. First we get the message that autistics are less than they should be. They are damaged. And not only are they damaged, but autism also destroys their loved ones. Allow autism to go unchecked and you are allowing this damage into your family.

So, “fix him!”. The goal of a parent is to try anything, tested or untested (mostly untested), with a demonstrated safety or (more often) not.

And while not in the above quote, “the clock is ticking”. You as a parent have only a short time before your child will forever be this source of sucking life’s marrow out of everyone around him/her.

Yes, that’s a toxic message. And yes, that plays into pushing some people over the edge. Did it push Dustin Hicks’ mother over? We can’t tell for sure. Did it push others? Yes. Consider Katie McCarron’s mother. She killed Katie because Katie was autistic and wasn’t on a path to being non-autistic. Who cared that Katie was a beautiful child with a future? Well, a lot of people. Her father. Her grandparents, just to name a few. But that wasn’t enough for her mother.

Let’s look for another source of the toxic message of the autism-is-vaccine-injury community. Here’s part of the introduction to Dr. Bob Sears’ “The Autism Book”, titled ironically “an encouraging word”. It begins:

Autism has become one of the most widespread childhoold epidemics in recorded history. Except for some infectious disease epidemics of the past, no other serious condition has ever affected so many of our children.”

He goes on later in that paragraph,

“What makes it so devastating for parents is that autism can strike unexpectedly, seemingly out of nowhere; a healthy and neurologically normal infant can suddenly regress into autism, between ages one and two.”

Where’s the encouraging message? We get the “devastating” and “epidemic” messages. What’s encouraging about that? Well, having sewn despair and fear, Dr. Bob offers encouragement in his book of untested (for either efficacy or safety) treatments based on either disproved or just bad ideas of what autism is.

And, again, having instilled the fear in the parents, what happens as the fake medicine doesn’t really render the child non-autistic? Not only the autism remains, but the fear and despair.

And that’s classic for the Dr. Bob’s and the Dr. Jerry’s of the world–use despair and fear and then sell hope. False hope. Tell them all will be better with fake treatments like chelation. Years back, JB Handley, founder of Generation Rescue, told the world that if you chelate your autistic kid, you “get them back”.

Boyd Haley, long proponent of the autism as mercury poisoning idea tried to coin the phrase “mad child disease” (because autism is just like mad cow disease, right?) for autism. He went on to try to sell an untested industrial chemical, a chelation compound, as a “supplement”.

Then you have people like Andrew Wakefield. Mr. Wakefield has been at the forefront of the vaccines-cause-autism movement for about 20 years now. He introduced one of his first books with a glorification of a murder/suicide. He gives a fictionalized account of a real incident in which a mother jumped to her death, taking her autistic child with her. With no apparent sense of irony, he ends his intro with

She knew. She was ready. Falling ever faster, she pulled him to her, love and instinct keeping him safe.

Because pulling/pushing your child to his death is “love” and “keeping him safe”.

Andrew Wakefield also famously took on a family in a very desperate situation–the Spourdalakis family. Alex Spourdalakis was an autistic teen with very extraordinary needs. Mr. Wakefield was trying to launch a reality show where he would show that his “autism team” could swoop in and save people like Alex, blame vaccines and move on to the next family.

Only after collecting his tape, after taking him to his colleague for the diagnosis of the non-existent diagnosis of “autistic enterocolitis”, Alex’s mother brutally murdered him.

But don’t look to the people who spread the message of despair to take responsibility. No. They will tell you, as Dr. Bob does, that they are giving “encouraging messages”.

In the days when Yahoo Groups were flourishing and many were focused on giving autism parents a venue to discuss autism as vaccine injury and ways to “heal” that supposed injury, one could often read parents write, “what have I got to lose”. Because the lives of their autistic children where already so devalued by the process of selling fake cures that parents actually came to believe, “what have I got to lose”.

Is this what drove Dustin Hick’s mother to the edge? We don’t know yet. Maybe in the past few years she came to separate herself from the ideas of autism as vaccine injury and autistics as being less and “devastating” to the family and all that goes with that message.

While writing this article, the Age of Autism blog came out with their own article on the murder/suicide. Kim Stagliano left this as the conclusion to her comment.

I do understand that some families will be so overwhelmed, so set adrift, so exhausted and facing such despair that murder and/or suicide seems the only solution. There but for the grace of God.


No, Kim, you don’t understand. You are and have been part of the problem. You are just using this tragedy to continue to spread your message of despair. You offer no help, instead you just throw an anchor to those who are already having trouble staying afloat.

Not “there for the grace of God”, Kim. How about, “if you get to that point, STOP. Find resources. If you have reached the end of your abilities, pass on the responsibility to someone else. Because even though it may seem the only solution, it isn’t.”

How about trying to stop this instead of claiming it’s some “new normal”. Not on my watch, Kim. Perhaps on yours, but not on mine.

I won’t close with that. Instead I’ll end as I started, with Shannon Rosa’s Parenting Kids With Disabilities: How to Get Through Tough Times.

To Dustin’s father, I can only imagine what you are going through.

Dustin, you should be alive today.

By Matt Carey

Another autistic youth killed by a parent. And, No, Channel 11 Atlanta, it’s not a “mercy killing”

7 Nov

Dustin Hicks was an autistic youth. A teen. Someone who faced very significant challenges and needed a great deal of support. But someone who needed to be respected and valued as a person.

Dustin Hicks was murdered by his mother. News stories are reporting that he was shot in the head. The exact motives are at present unclear since the mother killed herself shortly afterwards.

A TV station in Atlanta reports the story as Dawsonville mother shoots disabled son, self in possible mercy killing.

No. There is no mercy in murder. Just because someone is disabled doesn’t mean someone can justify or downplay murder.

No. Just no.

Our children are our responsibility, not our property. We do not get to kill our children and downplay it because they are disabled and call it mercy.

I can’t go on.

By Matt Carey

note: I corrected a mispelling in the above after this was published.

Associated Press: Woman who held disabled people captive gets life in prison

6 Nov

Sometimes people who misunderstand the disability rights movement, the neurodiversity movement or ideas like disability acceptance will try to characterize these movements as denialist.  They deny disability.  They deny challenges.  They “whitewash” disability.

It’s all bogus, but it’s a common theme.

Why bring that up, given the title of this article?  Well, here’s the news story: Woman who held disabled people captive gets life in prison.  Here’s the start of that story:

PHILADELPHIA (AP) A woman who kept mentally disabled adults captive in the basement of a Philadelphia home and in other states for their disability checks was sentenced Thursday to life in prison.

Linda Weston, 55, apologized during the hearing, saying: “I believe in God and God knows what happened.”

U.S. District Judge Cynthia Rufe replied that: “There are a lot of people in this courtroom who know what happened too,” according to

Thank you Judge Cynthia Rufe.  Thank you the strong sentence.  Thank you for the message that there is no excuse for what Linda Weston did.

Often I will post such stories here and leave it at that–here’s the horrible thing and damned right this person deserves to be put away for life.

But the conversation elsewhere will often focus on “this is why disability is so bad”.  Sure, they don’t write it in exactly those words, but the message is basically that.  It’s used to justify alternative (aka fake) medicine or promoting vaccine fears (ostensibly to keep others from facing the fate of being abused like the people in the story above).  All with sly attacks on “well, the neurodiverse just accept this”.

Hell no, we don’t.

Acceptance isn’t denial.  It isn’t giving up. It isn’t walking away from fights.  Acceptance is hard.  For a parent acceptance means facing reality head on and saying, “I will do what I can to change today’s reality to make a better place for my kid”.

No amount of bleach, chelation, vitamins, hyperbaric oxygen, energy medicine, homeopathy or any of those alternatives to medicine will make the evil people in the world go away.  Nor will they cure autism, but let’s move on.

We need a society that will make the bad people look elsewhere than at people with disabilities.  We need laws, law enforcement and courts that work to protect disabled people.  We need regular citizens who see it as their duty to help in these efforts.

And if history tells us anything–heck, if just looking around the world today tells us anything–it’s that making societies that will stand up for the rights of the disabled is hard.  Not impossible, but hard.  Because in the very recent past, many would have looked the other way or downplayed the actions of this horrible woman.   They would have said, yeah, but they were “only” disabled people.

Because in the past society didn’t respect the disabled.  It still doesn’t really, but it was much worse before.

This is why I advocate acceptance. I will need society to one day support my kid. And I don’t want society to do this out of pity. Because pity doesn’t come with respect. The institutions of the past are how my society “helped” those they didn’t respect in the past. No.

Linda Weston is an example of someone who did not understand acceptance. Clearly. She didn’t accept people as valuable. As human. Had the judge not understood acceptance, Weston might have gotten a lesser punishment.

For those who say that acceptance is for the so-called “high functioning” in the disability community, you have no idea what you are talking about. Those who need the most support are the ones who need acceptance the most. Because without it, crimes like the one above will be common.

As I said above, acceptance means looking reality head on. Anyone who thinks that’s easy or denial has never done it.

Matt Carey


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