Search results for 'mccarron'

Katie McCarron, I still think of you often

2 Mar

Today is the Disability Community Day of Mourning.

Every year on March 1st, the disability community gathers across the nation to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.

There are so many people who have died. So many who should be here today, except that a caregiver murdered them. Today is for all of them. But for this post, I just want to bring up one, if I may. A little girl who I never met, but think of often. A little girl who would be the same age as my kid.

Katie, you should be here. I shouldn’t know your name, but your family should be showing you the love that I know most of them felt so strongly for you.

Katie McCarron, you will be remembered as long as I live.


By Matt Carey

Karen McCarron asks for new trial, claims she believed Katie would be resurrected without autism

27 Oct

Karen McCarron was the mother of a beautiful daughter. I don’t think I will ever forget the image of Katie playing with her teletubbie doll. In 2006, Karen McCarron was tried and convicted of the murder of Katie.

In Convicted child killer Karen McCarron wants new trial, we find that Karen McCarron wants a new trial. She claims her attorney was not doing his job properly and that she (Karen) was suffering from religious delusions at the time:

Fischer said McCarron believed she was “not killing her (daughter) forever and Jesus Christ would resurrect her,” similar to a passage McCarron read in the Bible, and also believed her daughter would be resurrected without autism. Only later when McCarron realized her daughter was not being resurrected did she “snap out of it,” Fischer later said.

Recall that Karen McCarron was a doctor. A pathologist. The unfortunate fact is that Karen McCarron like had ample experience with the fact that when people die, they don’t get resurrected.

Let’s recall what Karen McCarron had to say during her 2006 trial:

……..McCarron told her defense attorney that she felt responsible for Katie’s autism because she allowed her the child [sic] to get vaccinated.

Katie was suffocated with a garbage bag. A police technician examined a bag entered as evidence for DNA:

According to Midden, a DNA substance was retrieved after she noticed possible teeth marks on the inside of the bag.

Possible teeth marks on the inside of the bag. Katie fought to live. Karen McCarron must have fought to kill Katie.

Rereading these descriptions is extremely painful, and Katie isn’t even a relative. I’ve never met any of the McCarron family in real life. My heart goes out to them as this story gets dragged up again.

From Mike McCarron to the Autism Hub

27 Jan

What follows is the text of an open letter, Mike McCarron, grandpa of Katie McCarron wishes to pass on to Autism Hub members.

An open letter to members of the Autism Hub.

I wish to thank each of you for your words; both about Katie and about people with special needs in general. In a world where differences easily become reasons to devalue people, your words have always conveyed respect, dignity and love for those with special needs.

I know that each of you from time to time question if you should express yourself and wonder if you are making a difference. Your opinions and descriptions of your travels in life have made a big difference to one grandfather and I suspect to many other parents.

In the days following my granddaughter’s death I was very upset. As I read comments from autism “advocates”, I moved from upset into anger. Many wanted to twist what happened to fit into their own agendas. All of you know the dialogue. I began to feel that all reason and common decency had been beaten out of society and replaced with hysterical and illogical screaming. Every time I would read some “advocate” say they could understand how a person could kill a child with autism I would bristle and await their self serving monologue of martyrdom. I even viewed a film clip that turned my stomach but it was receiving wide acclaim.

Then I encountered a different film, one of a little girl bouncing on a trampoline and I met Kevin. Next I found Kristina and the rest of your sites followed at different times mostly by reference from one of these two. During the extremely long trial process of twenty months I have visited your sites, some almost daily. Sometimes I would comment under a pseudonym but most of the time I just read and drew strength from your thoughts and your love. My interest in your posts varied by topic but I was always gratified and reassured by the love you expressed for your children and the respect shown for all people with differences.

I have had the pleasure of meeting some of you in person, I have corresponded with some of you, and still others I know only through your words on the internet. But words are so vitally important. The words used by some are frightening, intended solely for shock value, but are very divisive in the long term. Every time an “advocate” classifies autism as a fate worse than death they not only display the weakness of their own mind, but they do a terrible disservice to every autistic person. Your words and posts, firmly grounded in respect and love, foster the understanding needed for social movement toward improvement.

I sincerely hope that parents new to the autism community encounter the hub and your sites long before visiting many others. I find it strange to recommend sites that value human dignity; every site should, but too many don’t. That is what makes your sites so valuable. It seems that autism falls prey to every kind of con artist, they need to be exposed. It also seems that anything can be said about people with autism if the person saying it claims it was done to create awareness, they need to be set straight. Please continue to lead by example, do it as time permits but do what you can and what you already do so very well.


Mike McCarron

Karen McCarron’s Confessions Allowed

5 Aug

Over a month ago I posted an entry that detailed how the Mccarron family were being subjected to more court time as Katie’s killer, her mother Karen McCarron, decided to instruct her solicitor to try and block her admissions to Katie’s murder from the court record – that they would not be available as evidence during the trial proper.

On Friday, the court eventually decided that *all eleven* confessions will be allowed to be heard. These confessions are on video tape, in police records, in doctors records and in the memories of Katie’s family members such as Mike and Paul.

There are two aspects to this whole thing that bother me a great deal:

1) The local support group, ANSWERS, continue to openly support Karen McCarron and also testify in her defence at court. I would wager that not one member of this ‘support group’ has been around to see the McCarron family since Katie’s murder to offer ‘support’ to Paul McCarron. They are too busy defending the actions of child killers.

2) What sort of Judge takes over a month to make a simple decision? It is utterly cruel and heartless to the McCarron family to keep them hanging on in the manner they have been whilst this person dithered around making what should quite obviously be – given the fact there are eleven separate confessions – an easy call. Lets hope he pulls his finger out when it comes to the proper trial.

Most people who are regulars on this blog will know that I have a good relationship with the Mccarron’s. We are very close. They were asked by their solicitor not to discuss the case and so they have not but even though they have not, the pain they are suffering through is tangible. This ruling will not take away that pain but I hope it may finally offer them a little chink of light in the battle for Katie’s memory.

Katie McCarron

12 Jun

Since the horrifying news that three year old Katherine ‘Katie’ McCarron was killed by her mother, a few of us have been in contact with Katie’s Granddad – Mike McCarron.

Mike contacted me after viewing the WMV file of [my daughter] I uploaded to counter the idea that autism was a tragedy and that a killing like this was in any way understandable and we’ve swapped emails since then. I have to come to have an inordinate amount of respect for Mike not just for his utterly transparent love for his grand-daughter but also his lucid refusal to countenance the idea that her death can be in any way rationalised or painted as understandable, despite the mealy mouthed efforts of a few journalists and a couple of bloggers who should know better.

Mike sent me the picture of Katie a week or so ago but asked me not to blog it which was totally understandable. However, as the ‘this is justifiable’ nonsense has increased, Mike feels that its time to show people the beautiful child that we’re supposed to believe it was ‘understandable’ to kill.

Here’s a comment from Mike over on Kristina’s AutismVox blog:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

I’m not ashamed to state that I have cried numerous times since corresponding with Mike. In horror that something so appalling could happen to someone so young and innocent, in recognition of the most abrasive pain I could imagine when talking to Mike and in awe that he remains so lucid and how directed and purposeful his very real anger is:

But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

Everyone should have such a Grandpa.

UPDATE: Stephen at Not Dead Yet also received some photo’s of Katie, as did Kristina.

Katherine ‘Katie’ McCarron

23 May

This is about the third draft of this post that I’ve written. The others were too angry or too sad to be constructive or valid. This is an awful story for numerous reasons. First, Katherine was three years old. Little more than a baby. Secondly was the manner of her death. Her mother took a plastic bag and suffocated her with it. I am finding it difficult to move past the awful reality of how terrified Katherine must’ve been in her last few minutes alive.

Katherine was autistic. Her mother was a doctor. Friends are quoted as saying that she spent time on forums helping other people. As far as her child went, it seems she was deep into the ‘treatment’ option. A post touching on Katherine’s death confirms that McCarron was a supporter and purveyor of biomedical treatment:

Dr. McCarron (a pathologist) was asking me for my experiences with the Geier protocol. (her daughter Katherine was not on the protocol….She was a friend of FAIR’s medical director, Dr. Ayoub… and pretty friendly with Julie, our research director (with whom she’s had several phone conversations). She is such a smart lady… and caring person/loving mother who knows so much about biomed, I had actually thought to invite her to JOIN FAIR!

A friend of hers states:

Meanwhile, Karen McCarron had busied herself in an effort to find clues to the puzzle of her daughter’s autism. “She read every book. She was trying so hard, pursuing every lead,” the friend says.

I wish that Karen McCarron had not been looking so hard for clues to the puzzle of her daughters autism. I wish instead that she had concentrated on looking for clues to the reality of her daughter. I wish that she had read the recent paper on acceptance bringing benefits instead of reading every book, pursuing every lead to find clues to autism. Her friends go on to say that she had become disillusioned and worried as Katherine seemed to ‘begin regressing’. Up until then she had been attending a specialist autism clinic in North Carolina. I wonder what sort of clinic it was. Maybe it was this one with what seems to be a TEACCH style program. Then again, with someone who ‘knows so much about biomed’ it seems doubtful. Who knows for sure? Not me.

The upshot of all this was that…

The setback only exacerbated Karen McCarron’s difficulty in accepting her daughter’s condition, her friend says. Unlike coping parents of autistic children, McCarron did not go through a grieving process.

This grieving process is necessary. Jim Sinclair in his outstanding essay Don’t Mourn For Us says:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize.

This is true, but as Sinclair _also_ states, one has to separate grieving for an _event_ and grieving for the _child_, which is not healthy.

…But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.

It sounds like McCarron was unable to separate the event from the child and the quoted submerging herself in the ‘effort to find clues to the puzzle’ certainly bears that out.

The great tragedy in writing this piece is that I’m aware that I know much more about Karen McCarron than I do Katherine. No paper has written a piece about what she liked to do. No paper relates what her favourite toy was, or if she liked to rock in front of the TV. I try to think of her doing these things as a way to stop thinking about the way she died. However, I have read lots of pious exhortations to pray for Karen McCarron. The pompous piety of such drivel makes my stomach churn and reminds me of other deaths of autistic children where there were calls for prayers for the family and scant sympathy for the dead child concerned. This may be a first (and possibly last) for this blog but I totally agree with Lenny Schafer when he wrote in a recent SAR:

….when a child is killed there more is involved here than a debate over the proper level of support services families deserve to expect. The first and foremost response to the news of such horrible things of a child being so destroyed should be moral outrage. The first reaction should not be “oh poor mom, if she only had better services. . .” The primary cause of death of that girl, and too many others like her, was not lack of services. To either say or imply so is the saddest of distortions — and such sentiments helps shift responsibility for these acts away from those who perpetrate them. An abstract concept about levels of service did not put a plastic bag over the head of little Katie to smother her — a real human being did so.

I wrote at the top if this post that aside from the sadness, I feel anger. I’m trying to temper that down but I am angry with the immediate association my mind made when I heard about Katharine’s death.

On 9th may, Autism Speaks, an organisation that has no autistic members at board level, released a short film called ‘Autism Every Day’. If you want to view it, you’ll have to google it as I’m certainly not going to link to it.

This video has to be seen in its proper context. Its a fundraiser. Its a way of soliciting money from people via pity and tragedy. Having watched the film I was struck by several things.

The film is entirely negative about autism. The opening scenes consist of autistic kids having meltdowns. No one seems to be addressing the fact that autistic kids are susceptible to changes in routine and that hence the cameras and crew are probably deeply unsettling.

At one point in the film, a young autistic girl a couple of years older than my daughter tries to retreat the refuge of her room. The director takes it upon himself to get a camera to follow her. The result is both predictable and probably considered great footage.

The editor seems to believe that no men are concerned about autism. I spotted two Dads (I presume they were Dads). The vast majority of the film interviewed women. I guess its easier to solicit money when you can create the belief that the autism community is parented mainly by single mothers.

The most chilling part of the film came when one of the mothers talked about how she had considered killing herself and her autistic daughter. She related this whilst her daughter was in the room. She concluded this segment by saying that the only reason she didn’t do it was her NT child.

This film was released on May 9th and consequently shown on the US nationally broadcast Don Imus show. Katherine McCarron was murdered by her mum on the 13th.

No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids… what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are _far_ from the whole story.

Katherine didn’t live long enough to live in acceptance. Her mother was so intent on autism, she never saw the autistic child. She decided that at three years old Katherine had had her chance and that she, as her mother, was a fit person to judge her undeserving of more life. Autism Speaks? No. ‘Autism’ was never given a chance to speak in this case. Autism’s parent removed that option.

My daughter is three years older than Katherine McCarron was when she died. At three Katherine and Megan were probably very similar. I don’t know if they shared the same interests or not but I hope they did because Meg is one of the happiest children I know. What she does ‘every day’ makes her happy.

I want to share some aspects of Megan’s life with you all – one of the things she likes the most and one of her favourite songs. I want you to see that ‘autism every day’ is not black or white. I want you to see that our children live in a place where their potential is just the same as everyone elses’s. Nobody deserves to die at age three. Especially for the pathetic reason that they happen to be autistic.

As you watch my daughter, please remember Katherine McCarron. I hope she had a favourite song and some days in the sun.

Beautiful Autism – WMV file (Windows Media Player), 30mb download, sound required.

Polly Tommey won’t judge parents who murder their disabled children. That’s part of the problem

13 Jul

Let’s just jump right to the video clip. Because it needs no introduction, it is just so wrong:

The speaker is Polly Tommey. Polly Tommey has a long history of bad autism advocacy. When people think of the autism parents who just do advocacy wrong, they are thinking of people like Polly Tommey. She’s been a voice in the “vaccines-cause-autism” movement for a long time. She’s worked with Andrew Wakefield (whose unethical actions in relation to disabled patients at his hospital lost him his medical license. To name one of his many failures). This in itself demonstrates bad judgement and poor reasoning. Recall that Andrew Wakfield fictionalized an account of a parent murdering her autistic child, framing it as an act of love.

But the low point of Polly Tommey’s advocacy career came when she and Andrew Wakefield “helped” a family in crisis. They were working on a reality TV show (that failed to get off the ground) called the Autism Team. The idea was simple: find a family with an autistic child who is in need of help. Swoop in with Team Wakefield, blame vaccines, claim it’s all about gastrointestinal issues, claim to have helped the family and move on to the next. But it all fell apart with one family–that of Alex Spourdalakis. In the autism community, a community were people have extraordinary needs, Alex had extraordinary needs. What he didn’t need was for his mother to be fed false hopes and bad advice, which is what Team Wakefield did. What he didn’t need was for Team Wakefield to walk away to their next project, leaving his mother with nothing when the hope they were sold proved false.

Alex was murdered. Brutally murdered. By his mother and another caregiver. Alex was poisoned. When that failed to kill him, he was stabbed. Repeatedly. His wrist was slit to the bone. By his mother and caregiver. Alex bled to death, leaving a grisly scene for when his father, estranged from the mother, found him.

The fact that Polly Tommey won’t face up to her abject failure with Alex Spourdalakis is not surprising. It is also not surprising that Polly Tommey won’t judge the people who committed that brutal murder, or any other murder by a parent of an autistic child. Not surprising, but an example of the failure of Polly Tommey and other faux autism advocates to actually stand up and lead. How hard is it to say, “No! Murder is wrong”?

Polly Tommey met Alex Spourdalakis. But she “won’t judge” the person who plunged a knife into his chest. She won’t judge the person who poisoned him. She won’t judge the person who slit his wrist.

No, she won’t judge Alex’s murderers. Instead she and Wakefield capitalized on the tragedy to make “documentary”, taking Alex’s story to promote their own agenda.

Ms. Tommey tells us to check the web for stories. I searched for: autism parent murder child. First hit was this article: “Please Don’t Murder Us” Shouldn’t Be Controversial. Autistic people don’t share your views, Ms. Tommey. Autistic people don’t think we should stand back and “not judge” murderers.

Check the web, Ms. Tommey, and you will find the story of Katie McCarron.


Katie was murdered by a mother who wanted a non disabled child. Katie, suffocated in a plastic bag by one of the people she most loved. Katie, who should be a beautiful young teenager today. Katie, whose mother felt that vaccinating her child made her responsible for Katie’s autism. Yes, the vaccination myth you, Polly Tommey, promote played into Katie’s murder. While Katie’s mother was suffocating her with a plastic bag, Katie struggled to get free, leaving teeth marks on the bag. She suffered. She feared.

Katie’s family (not counting her mother) loved her. She was valued. Her father stated, “If the measure of a person’s life could be quantified by the number of people that loved them, then Katie, in her brief 3 1/2 years, achieved well beyond all of us.”

Polly Tommey why won’t you judge Katie’s mother? Why won’t you stand up and say, “this is wrong”? Why not stand with Katie’s father?

Keep searching the web, Ms. Tommey and you will find London McCabe.


He loved hats. More importantly, he was loved. Valued. His father is quoted as saying that London was his whole world. That he will miss London forever.

London McCabe’s mother took him to a bridge and pushed him over the rail. He fell over 100 feet, landing in a river. He not only had the fall to know that his own mother had pushed him over, he survived the fall, suffering multiple broken bones. He died from drowning. London McCabe suffered. He suffered fear. He suffered pain. He suffered betrayal. His mother had planned the murder, researched how to get off with an insanity defense (which thankfully failed).

But outright premeditated murder isn’t something you can judge, Ms. Tommey?

When you say, “I won’t judge”, you are saying, “autistics have such hard lives that killing them can be justified in some cases”. You were probably thinking of people like Alex, whose challenges were great. But you were wrong. Alex deserved his chance. He deserved his life. But even in your twisted logic, why can’t you bring yourself to judge Katie’s mother? London’s mother?

You and your new friend Del Bigtree are trying to make a name for yourselves with all your talk of freedom we Americans value so strongly. Let me remind you of the Declaration of Independence.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness

All men are created equal. And the first of the “unalienable rights” is life.

Alex Spourdalakis was created equal. He had a right to life.

Katie McCarron was created equal. She had a right to life.

London McCabe was created equal. He had a right to life.

All people with disabilities are created equal. All have a right to life. A many are murdered. Why don’t you stand with them? Why do you stand with those who murder?

The phrase “parental rights” doesn’t exist in the Constitution. As a parent I am not endowed with the right to chose life or death for my child. Until you understand that, all your “freedom” rhetoric is, frankly, just a bullshit public relations effort.

When you refuse to judge, you enable. You make it just that little bit easier for parents and other caregivers to murder.

My kid faces an uncertain future. A future where abuse and murder are real possibilities. My kid needs advocates who will stand up for him and his rights. If I do wrong by my son, damned right someone should judge me. Because if we refuse to judge parents, we say it’s acceptable to commit murder. It’s acceptable to treat autistics as less valuable, less human, less deserving of basic human rights.

It is perfectly acceptable, even important, to judge others when they fail. Ms. Tommey, in case it isn’t clear, I’m judging you right now.

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

Katie, you should be twelve

1 Mar

Katie McCarron, you were beautiful and wonderful and loved by your father and grandparents and I’m sure so many more. Here’s what your grandfather had to say shortly after your passing:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that Katie was not in pain. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of karaoke. She liked to dance, she loved to do the hooky poky. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

I am writing about you today because it is a day of mourning in our community. A day when we remember those we failed to defend. For each of us there may be one out of the many murdered who touches us most deeply. I write about you today because it is a day of mourning. I think about you often.

If I recall correctly you should be turning thirteen later this year. I wonder how that wonderful smile would have matured. I know that there were people in your life who would be cherishing you and loving you. You deserved that.

By Matt Carey

Autism Speaks: it’s time to listen

18 Dec

I’ve always found the Autism Speaks motto ironic: “Autism Speaks. It’s time to listen.” Change he period to a colon and you get “Autism Speaks: it’s time to listen”. And, please, could you start listening, Autism Speaks?

Autism Speaks got off to a rocky start. Although they claimed an ” overwhelming positive response from the autism community”, the rollout of the organization was met with much criticism. Autism Speaks co-founder Suzanne Wright adhered to the “missing child” model of autism with phrases like: “It is as if he’d been kidnapped, or somehow had his mind and spirit locked in a dark hole deep within him”. She also had the parent-centric model of the autism community with phrases like “Such an effort must be driven by those with most at stake: the parents of autistic children.”

Shortly after their launch, Autism Speaks released a short film, Autism Every Day. While Autism Speaks told themselves and the world that the response was positive, in reality there was a great deal of negative reaction. (e.g. here, here, here, here, and more.)

It took years, but eventually Autism Speaks listened. The video disappeared from their website and YouTube channel.

Another video debacle came in the form of “I am autism” which depicted autism as a sinister monster stealing babies and ruining parent’s lives. Here’s the transcript in case you think I’m exaggerating. The video is now also removed.

Every now an then, I feel hope for Autism Speaks. There are some really excellent people at AS. AS took on the phrase “different, not less“. Sometimes a blog post comes by that I particularly like. And a lot of their research portfolio is quite good.

Then you get announcements like this one: Autism Speaks to Washington – A Call for Action. And we see that we are back to 2006. We are back to “I am autism” but this time it’s phrased “This is Autism”.

As a result of that opinion piece, John Elder Robison quit. He was one of the few (if not the only) autistics working in a high profile position with Autism Speaks. Here’s a section from his article, I resign my roles at Autism Speaks:

For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support. There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.

A newspaper in Palm Beach, Florida (where the Wrights have a home) published the article: Autism Speaks post rattles some readers One board member resigns, saying he can’t stand by co-founder Suzanne Wright’s views. While they couldn’t get a comment from Mrs. Wright, they did get some statements from Autism Speaks itself.

Autism Speaks took the old cop out. Whenever there’s a discussion of whether a depiction of autism is demeaning, one can count on hearing the argument that the discussion is between parents of “severely” autistic kids and “high functioning” adults.

Michael Rosen, executive vice president of strategic communications at Autism Speaks, said Robison was the only one who resigned over the post. He said the organization understands that higher-functioning people with autism may have a different point of view about the issue.

“The people who are not sick, not unhappy, and are totally fulfilled and happy with their differences, we totally support them as well,” Rosen said. “We’re not looking to change anybody, we’re looking to support and get services for everyone who needs them.

“What that column had was a lot of empathy for those who are struggling the most. But for those who just need support and services, we work for them as well.”

Eight years ago Autism Speaks could pretend to be ignorant of the fact that much, a great deal in fact, of the criticism they get is from parents like me. Parents of children. Children who are “struggling the most”.

Then there’s the old “they see autism as a good thing” bit:

He said some people with autism feel it’s “a good thing” that just makes them “neurologically different. It’s a matter of diversity, and diversity is a good thing. We understand that and get that. They’re proud of their diversity and we salute them.”

Unless John Robison was VERY different at Autism Speaks meetings than the John Robison I’ve seen at IACC meetings, Mr. Rosen had no business saying what he did. Perhaps he could have read Mr. Robison’s resignation article:

I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

Many autistic people are aware of this dichotomy. Some of us feel “totally disabled” and others feel “totally gifted.” Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.

It’s so much easier to build the straw man that criticism comes from those who are “totally fulfilled and happy” than to face the criticism head on.

Doing a quick google search, I found these criticisms of Mrs. Wrights op-ed:

A Reporter’s Guide to the Autism Speaks Debacle
by Lucy Berrington, autistic adult

by the Autism Women’s Network

A Poem For Suzanne Wright. A Call To Action; A Call To Be. November 15, 2013
By Cheairs Graves, mother of an autistic child.

no more – a letter to suzanne wright
by Jess, mother of an autistic child.

The Price We Pay for Autism Speaks
by Heather Clark, mother to two autistic children

Why Autism Speaks Doesn’t Speak for Me
by Emily Willingham, mother of an autistic child.

And there’s more. I did run into a couple articles supporting Mrs. Wright too. But this isn’t about who has more articles, it’s about the fact that Autism Speaks chose to frame the discussion in a very simplistic and, frankly, insulting way. They dismiss the criticism and ignore the fact that much of it comes from parents. The people Autism Speaks claims to represent in this discussion.

Autism Speaks: it’s time to understand.

By Matt Carey