Action For Autism

Is autism a disease?

 A QUESTION

Over on Orac’s blog, Respectful Insolence, The Integral asked an interesting question.

Orac, and anyone else, I need help…..I want to respond to someone who believes that autism is a “disease”………I don’t believe that at all. Are there medical blogs/entries/articles that offer “proof” (for lack of a better term) that autism is not a true disease, like HIV or syphillis or other things like that?

thanks………I wouldn’t know where to start looking.

The Integral

 SOME ANSWERS

Well, the president elect of the American Acadamy of Pediatrics, Doctor David Tayloe has stated on the Larry King Show that he regards autism as a disease.

KING: He might do a few things. What puzzles you the most, Dr. Tayloe, about autism?

TAYLOE: Autism is a disease that just doesn’t have an easily identify cause or therapy.

KING: You call it disease?

TAYLOE: Yes.

Doctor Grinker in Unstrange Minds wrote:

 “In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs and systems, whereas an illness is the experience of unwanted or negative changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.” [Unstrange Minds page 230]

Furthermore autism is included in the World Health Organization’s International Classification of Diseases. You will find it in Chapter V, Mental and Behavioural Disorders. Dig deeper and you find autism in block F80-F89 Disorders of Psychological Development. 

In the United States (and increasingly throughout the rest of the world) The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR) offers an alternative system of classification that, like the ICD 10, also refers to autism as a disorder.

This all illustrates the folly of using quote mining to try and prove a point. Dr Tayloe is a pediatrician. He treats sick children. I imagine that he uses words like illness and disease as synonyms and has no reason to consider the technical differences between these two terms that Dr Grinker, the anthropologist describes. And it is very unlikely that either of them will have enjoyed the dubious pleasure of sitting on commitees that explore the nosological niceties involved in classifying and defining conditions and deciding whether they constitute a disease or a disorder or even a syndrome. (Asperger’s Disorder in DSM-IV-TR is Asperger’s Syndrome in ICD-10 for example.)

Joseph responded to The Integral and linked to his own blog post on the Emporor’s New Pathology. I particularly enjoyed his conclusion.

Calling something a pathology shouldn’t be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?

The short answer is that it is problematic when the so-called disease refers to your way of being. If it were no big deal, then shouldn’t the gay community be OK with homosexuality being called a pathology?  The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical “cure”, which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone’s way of being, calling the condition a disease is effectively the same as calling the individual a disease. This is the case whether we’re talking about a disability or a difference.

I would quibble with the last point. The individual may feel that. But this does not mean it is the intention of those who call autism a disease. I do agree with Joseph that:

It’s really not something there is a right answer for based on what is known. It’s probably more of a political question at the moment.

DISCUSSION

My old philosophy tutor warned us against ”weasel words” that often have to bear the weight of the user’s political and ideological baggage. That is why we have to be careful when ascribing significance to ”expert” opinions and  definitions. When challenged over whether autism is a disease, a disorder, a syndrome or even a difference our natural inclination is to follow The Integral in seeking out an authoritative source to justify the political burden that we attach to the concept. 

But that just mirrors our opponent, who has their own agenda and their own  equally authoritative sources. We have all been there, swapping PubMed abstracts in a vain attempt to trump the other person’s argument. It is better to challenge the other person to justify their argument.

Some examples:

• “What do you mean by disease?”

• “What do you mean when you characterize autism as a disease?”

• “By your definition is Down’s Syndrome a disease?”

• “Why is it important to you that autism is not a disease?”

• “What would it take to prove you wrong?”

In my experience the important thing in discussions like these is not to persuade the other person that they are wrong. Instead, if you believe that reason supports your case, the important thing is to persuade your opponent to think. It is also incumbent on you to think as well. We all come to these questions with a predisposition to favour one side or another. This may be a reasoned decision based on previous knowledge and understanding or it may be more visceral.

Some more examples:

• If it is wrong to eat mercury in a tuna sandwich how can it be right to inject it into babies?

• If autism is a disease of course we ought to try and cure it.

• Investigating the causes of autism is the same as wanting to get rid of all autistics.

• Saying I have a disease is like saying I am a disease.

Sometimes gut feelings turn out to be correct. After all instinct preceded intellect in the evolution of  life. But feelings should not be privileged over other forms of knowledge. Your strength of feeling is no more a measure of truth than your opponent’s equal and opposite feeling on the same subject. We often turn to science to settle these questions. But, as Joseph observed, how we characterize autism is as much a political question or [my preference] a philosophical question.

The problem with philosophy is that it is not science. The scientist uses tested procedures, equipment, measuring devices to produce data. And there are further statistical tools to analyze the data and point to conclusions. It is not perfect. Bias can interfere with the choice of subject, study design and the interpretation of results. Even so the bench work of the humblest scientist should yield results that are more objective than the discourse of the most eminent philosopher. And most of us engaging in these discussions are trained in neither science nor philosophy! 

A CONCLUSION

I think that whenever we use words like disease, cure, neurodiversity, acceptance around autism we should not be asking are they true. Instead we should ask if they are helpful. Do they take the discussion forward or do they erect barriers? It all depends on the context. In the case of anthropologists like Dr Grinker who are examining autism in the context of the cultural response to difference, it makes sense to think of autism as a disease entity and compare it to other disease entities. Are attitudes to autism within a given society concordant with attitudes to other diseases or to disease in general? Diseases like childhood cancers can attract sympathy and the local community will rally round an affected family. The same people may recoil from a child with AIDS. Where does autism fit in this scheme of things?

I do not think it is useful for medical doctors like Dr Tayloe to think of autism as a disease.  All their training leads them to seek cures for diseases, to normalize the abnormal. But if you think of autism as a different way of being the solution changes. Instead of trying to normalize the autistic person you are more concerned to optimize their development. And if that means accepting the parameters of their autism rather than seeking to eradicate them so be it. When I addressed a conference of health service professionals in London a few years ago I gave them this message.

It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.

A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,

“I’m sorry, Dad. I wish I could have been the boy you never had.”

Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.

April 27th, 2008 Posted by Mike | Autism, Neurodiversity, autism acceptance, politics, science | 32 comments

Petition the UK Government for Autism

Barbara Wilson, the National Autistic Society Regional Councillor for the South West has had a petition to the Prime Minister accepted by the office of the Prime Minister. UK citiizens can sign the petition on the Prime Minister’s website

The petition reads:

    We the undersigned petition the Prime Minister to make it
    compulsory for Local Authorities, NHS and Social Care to work
    together to produce a strategy with guidelines for Autism /
    Asperger syndrome  including diagnosis, pathways to services
    and criteria that are realistic and address supportive and
    lifelong support,rather than waiting for people to fall into
    crisis before services respond.  Also to create a national data
    base of the numbers of people diagnosed as being on the ASD
    spectrum.

    for people on the Autism/Asperger Spectrum specifically to
    address the issues on Fair Access to Care and support that many
    consequently fall through the services. Also adopting a clear
    pathway to services for adults on the spectrum who currently
    are referred to as ‘high functioning’ rather than awaiting
    their move into ‘crisis’ To include more preventative and
    supportive approach. We need to have a national data base on
    the numbers of people affected.  Currently services are only
    estimating numbers consequently do not see the need for
    strategies and specific services.

I am sure this petition will strike a chord with many people in the UK and chime with the experience of autistic people and their families around the world. In the UK we have plenty of good practise guidelines for health, education and social care but very little effort on the part of government to mandate these guidelines or provide adequate funding. Sometimes these guidelines come together and are implemented in the provision of children’s services. Even so,

• Over 50% of children are not in the kind of school their parents believe would best support them.

• 66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.

• Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
  across the school.

• In mainstream schools only 27% of parents say that all their child’s teachers could adjust their approach and
  teaching materials - and therefore meet their legal duties under the SEN and Disability Act (2001).

• Special Educational Needs Co-ordinators (SENCOs) are responsible for co-ordinating provision for children with
  autism in schools, yet 23% of parents are dissatisfied with SENCOs’ level of understanding of autism.

• Over 40% of children with autism have been bullied at school.

• 45% of parents say it took over a year for their child to receive any support. 

• There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about
  autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case. 

• Parents say the biggest gap in provision is social skills programmes. 

• 1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.

• Only 53% of young people aged 14 to 19 years have transition plans, falling to just 34% of students in mainstream schools.

Source: Make Schools Makes Sense Autism and education: the reality for families today. (NAS 2006)

The Makes Schools Make Sense Campaign did make a difference. The government has responded to our concerns and made a number of commitments designed to improve education for autistic children in England. That still leaves the rest of the United Kingdom. But it is a start.

If the situation for children is bad, then for adults it is dire. This year, the Think Differently About Autism Campaign is focusing on adults under the slogan “I exist” Its main points are that,

• Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.

• 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.

• 61% of adults with autism rely on their family financially and 40% live with their parents.

• 60% of parents believed that a lack of support has led to higher support needs later on.

• At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.

 Source: I Exist. The message from adults with autism in England (NAS 2008)

Barbara’s petition can only help to focus attention on these problems. Autistic people and their families, along with autism professionals and advocacy organizations spend a lot of time arguing about important issues like causation, cure and the various interventions that are supposed to help autistic people fit in with society. But while we may disagree on how to assist autistic people in coping with society, we should all agree to support Barbara’s petition and campaign to make society better able to understand and cope with autism. 

NB. Throughout this blog post I refer to England and link to materials pertaining to NAS campaigns in England. This is a consequence of the different forms of government that pertain throughout the United Kingdom and the way these differences impact upon the provision of services. There are parallel campaigns in Scotland, Northern Ireland and Wales that take account of these differences.

April 23rd, 2008 Posted by Mike | Autism rights, National Autistic Society, adults, autism advocacy, disability rights, education, government, parents | 4 comments

An open letter to David Kirby and Dan Olmsted about the Kathleen Seidel subpoena

Orac has written this open letter. Please spread it far and wide.

Dear Mr. Kirby and Mr. Olmsted:

You are both journalists. I realize that neither of you at present work for the traditional press and that both of you seem to devote yourselves mainly to blogging (Mr. Olmsted at the Age of Autism and Mr. Kirby at the Huffington Post), but I have to believe that you both still consider yourselves to be at heart journalists. That is why I am writing this to you and posting it publicly on my blog. If you’ve ever read any of my posts on this issue, you probably realize that I strongly disagree with your positions and that at times I have been quite harsh in my judgment of articles you have both written. I am, however, hoping that for this one issue, upon which (I hope) we can all agree that you will for the moment put that aside and consider what I have to say. I am appealing for your condemnation of what has been done to autism blogger Kathleen Seidel.

The letter continues at Respectful Insolence

I hope that Olmsted and Kirby respond. As Orac points out later in his letter, if a vaccine injury lawyer is allowed to silence his critics with a subpoena, government and industry lawyers will take note and journalist bloggers like Olmsted and Kirby could be next in line.

April 6th, 2008 Posted by Mike | Neurodiversity, journalism | 11 comments

Shoemaker’s subpoena is a load of cobblers

Kathleen Seidel’s Neurodiversity blog is an example to us all. She combines meticulous research with lucid prose.  Her writing is as good as or better than much that passes for investigative journalism today.  Now she has had to add the skills of a lawyer to those of a journalist in response to a subpoena from Clifford Shoemaker. This subpoena is so onerous and burdensome in its demands that it beggars belief, even in an overlawyered society like America.  

Kathleen is being subpoenaed to testify at the taking of a deposition in the case of Lisa Sykes et al versus the Bayer Corporation and to provide

All documentation  pertaining to the set up, financing, running, research, maintaining the website: http://www.neurodiversity.com that specifically relates to Lisa Sykes, her son, her lawsuits (NVICP and civil litigation, her church position, her family in general, her associates, her attorneys, her Citizen’s petition (FDA Filings and Court Filings) and her physicians. This shall include, but not be limited to bank statements, cancelled checks, online or offline donation documents, and tax returns. This to include the names of persons helping, paying or facilitating in any fashion these endeavours.

Whoa there!

1. Kathleen is not a party to the dispute between Sykes and Bayer.
2. She has had no contact with any of the parties to the dispute.
3. The content of her website will have no bearing on the outcome of the case which will be determined by the quality of the expert testimony brought to the case by both sides, not the sleuthing of a citizen blogger.
4. Nobody pays her to maintain Neurodiversity. She puts her own time and money into it.

It is obvious what Shoemaker is after. He is on a fishing trip to see what he can learn about Neurodiversity.com. Perhaps he thinks it is a front for Big Pharma and he can turn up something that will embarrass Bayer in court. He is only in it for the money and so cannot conceive how a private citizen  could put so much effort into a resource like Neurodiversity.com and have the moral rectitude to blog about the abuse of autistics by quack practitioners and their attempts to use the courts to justify their behaviour and all with no thought of personal gain for herself.

But Shoemaker is not just fishing. It seems his intention to bully and intimidate Kathleen into silence. Because the subpoena asks for more, a lot more. Kathleen describes it thus in her motion to quash,

The subpoena commands production of “all documents pertaining to the setup, financing, running, research, maintaining the website http://www.neurodiversity.com“ – including but not limited to material mentioning the plaintiffs – and the names of all persons “helping, paying or facilitating in any fashion” my endeavors. The subpoena demands bank statements, cancelled checks, donation records, tax returns, Freedom of Information Act requests, LexisNexis® and PACER usage records. The subpoena demands copies of all of my communications concerning any issue which is included on my website, including communications with representatives of the federal government, the pharmaceutical industry, advocacy groups, non-governmental organizations, political action groups, profit or non-profit entities, journals, editorial boards, scientific boards, academic boards, medical licensing boards, any “religious groups (Muslim or otherwise), or individuals with religious affiliations,” and any other “concerned individuals.”

Could any of this be connected to the fact that 4 hours before being served with this subpoena Kathleen published a blog post The Commerce in Causation which enumerated legal costs paid to Mr Shoemaker by the National vaccine injury compensation Programe to the sum of $584,449.28.

Kathleen ends that post thus:

These nonprecedential decisions reveal only a portion of Mr. Shoemaker’s VICP income since June 2006; they pertain to fee requests to which HHS and the presiding Special Master raised few objections. In contrast, published decisions on fees and costs offer a more detailed view of controversies calling for a comprehensive judicial analysis, and of the billing practices of petitioners’ attorneys.

to be continued

Could the real purpose of this subpoena be less to do with what Shoemaker thinks Kathleen might know about Sykes versus Bayer and more to do with what he thinks she might know about him? Whatever his motives, he has managed to spread his name  accross the Internet to almost universal opprobrium.  Anti quackery blogs like Holford Watch, Science Bloggers, Autism Hubbers and legal blogs like the aptly named Overlawyered are all chiming in on Kathleen’s behalf. I Speak of Dreams is trying to keep a comprehensive list of them all. The total currently stands at 52.

Some voices have remained silent. Can you imagine the reaction in some quarters if the Department of Justice decided to subpoena David Kirby to discover who was leaking court documents to him in the Poling case. By his own admission

The unprecedented concession was filed on November 9, and sealed to protect the plaintiff’s identify. It was obtained through individuals unrelated to the case.  

As a fellow blogger it ought to be in his interest to support Kathleen against this abuse of the legal process. How about it, David?

April 5th, 2008 Posted by Mike | Autism, Neurodiversity, journalism | 13 comments

Dr Tayloe, apologies from (some of) the autism community

David T Tayloe is a pediatrician from Goldsboro, North Carolina (NC) and president elect of the American Acadamy of Pediatrics (AAP) He seemed a decent fellow when I watched him on on the recent Larry King Show about autism. This is what he had to say, taken from the transcript of the show (with numerous interruptions [...] from Jenny McCarthy edited out.)

On Vaccines

“Well, first of all, the childhood vaccine program is the most beneficial public health program in the history of mankind. [...]
And you must have immunization rates that approach 90 percent to keep diseases such as polio, measles, whooping cough and diphtheria from coming in here from countries. They’re one plane ride away and we’re that close to an epidemic.
So, for the American Academy of Pediatrics to want to change the immunization program, there would have to be medical evidence — indisputable medical evidence that we ought to change it. Now [...] we’ve changed it about six times just in the last 10 years. We changed the whooping cough vaccine, we changed the polio vaccine, we changed the rotavirus vaccine.

KING: Why are there so many? TAYLOE: Because we’ve been able to develop ways to vaccinate children to prevent pain and suffering. Just in my practice, I’ve watched three children die of each of the different kinds of bacterial meningitis that we immunize for today. And it’s tragic when that happens. I, in my practice, have not referred a child to the compensation program for a vaccine-related injury [...] and our practice has seen over [...] over a hundred thousand kids a year. [...] They’re recommended.

On drug company donations to the AAP 

TAYLOE: I would say it does not influence policy. We have very strict conflict of interest and ethical statements, and abide by the professionalism guidelines of the AMA and are very sensitive issues. Again, we’re not afraid of the truth about vaccines. We’re all for vaccine safety research, efficacy research, all of that.

On profit from vaccines

TAYLOE: I think vaccines are a very difficult way to make a profit in a pediatric practice, because the price of the newest vaccines are like 120 a dose, one dose. And the insurance companies don’t want to pay us much more than that very bare-bones amount for all the costs we have with the vaccines. Then the administration fees are less than what’s recommended by Medicare in most practices.So physicians, as a rule, are taking a loss on vaccines in their practices. But we feel so committed to the public health effort, that we’re going to do it. And just about half the children receive government funded vaccines, which are free vaccines that go to the states. There’s no profit at all there. You just give the vaccine and then charge a government controlled administration fee.So this is not a profit center for pediatrics. This is something that’s for public health that we all do. And it’s the right thing to do.

On listening to parents about autism

TAYLOE: At the American Council of Pediatrics we’re making some progress on that, because we had two policy statements in November, and a tool kit for our members. We’re getting 18 and 24 month screens. I like to screen between six and 12 months, carefully. [...]We are quite willing to work with anyone on this. We would like to be [...]

This all seems quite reasonable to me. Dr Tayloe is expressing the mainstream medical opinion on vaccines, which was why he was invited onto the show. But he is not just a mouthpiece for the AAP. Dr Tayloe heads a pediatric practise in Goldsboro NC and he is obviously motivated by a desire to care for children. I found the part were he talked about the children in his practise who died from diseases that can now be prevented with vaccines particularly moving.

However, not everybody shares my opinion. Those who cling to the notion that vaccines cause autism appear outraged by his comments. A lady who once claimed to bring “graciousness” to the debate about autism wrote on her blog:

Dr. Tayloe said that in his practice that has seen 100,000 patients that he has never referred one person to the Vaccine Injury Compensation Fund. If he has never seen a serious vaccine injury, it is not because he has not come across one, it is because he has his head up his ass.Tayloe is just dangerous.

This man has GOT to be removed from the position that he has been elected to before he takes office. I would take Karp in a second over this guy. Karp was wrong, but he wasn’t crazy person saying insane things with a smile wrong.

Actually, Dr Tayloe’s words show us how rare vaccine injuries are. There are around 60 million children aged 14 and under in the USA and around 60,000 pediatricians. Out of all the millions of kids who have been vaccinated, there have been less than 10,000 petitions (8,224) to the US Court of Federal Claims under the National Vaccine Injury Compensation Program since its inception nearly twenty years ago in October 1988.  Though  I hesitate to contradict a gracious lady, it seems to me that, in the light of these figures, the likelihood of a pediatrician encountering a case of vaccine damage is low enough to encourage belief in Dr Tayloe’s statement.

Never mind. Our gracious lady suddenly adds an interpolation:

[UPDATE: OMG! Turns out the Vaccine Injury Compensation Court exists in part due to the 3.5 million dollar malpractice suit that Dr. David Tayloe lost in 1985 when a child he gave the DPT shot to magically got permanent brain injury!! That Asshole just got on TV and implied that he had never SEEN a vaccine injury in his practice!!! ]

Actually this was Dr Tayloe’s father, David T Tayloe Snr. Our David Tayloe, David T Tayloe Jnr. was still at medical school during the fateful immunization in 1974. The settlement was reduced to $1.1 million on appeal and the real culprit, if ‘culprit’ is an appropriate word in this case, was the practise nurse who failed to inform Dr Tayloe Snr. of a reported adverse reaction by the child to his initial DPT shot.

Incidentally, I wrote to the lawyer who prosecuted the case against Dr Tayloe Snr. and he told me that Dr Tayloe,  “seemed like a  nice guy who just made a mistake which was fatal to a baby.” Our gracious lady is less than gracious when she writes,

I got an email from someone Tayloe went to med school with that says this was his father. In thinking about where to adjust my judgmentalism meter, I think that I will retract my declaration that he is an asshole, and say that he is a dangerous, foolish man.

That is big of you, Ginger. Then you go on to say:

A jury told his own father that he was more than three million dollars worth of wrong for administering a shot that plunged a boy into brain damage, and he learned nothing from it, continuing to claim that ‘all vaccines are safe for every child’, and that there is no such thing as serious vaccine injury. (or maybe, but barely ever, as his statement last week was that there was not “any relationship between vaccines and permanent injury”, and this week he has downgraded his stance to “extremely rare”.) Even though it was not directly his, he should still know better because of his father’s legacy.]

Sins of the fathers? Even so, if that was my legacy I would be very much aware of the possibility of vaccine damage. And I am sure that Dr Tayloe Jnr is aware. But he must be equally aware of his profesional obligation to maintain the health of the nation by encouraging take up of the vaccine program. Considering his family history I can think of no man better equiped to lead the AAP in this task.

There are many people who presume to speak on behalf of the autism community. Very few of them speak for me. So, speaking entirely for myself, I just want to apologize to Dr Tayloe on behalf of all the people like me for the ill-deserved remarks that have come your way as a result of your appearance on the Larry King Show.

April 5th, 2008 Posted by Mike | Autism, vaccines | 7 comments

Karen McCarron sentenced to 36 years in prison

Karen McCarron was convicted in January of murdering her autistic daughter, Katie. Today she was sentenced to 36 years in prison. It is too soon to know if she will appeal. When Katie was murdered there was a real concern that this would be presented as yet another case of a desperate mother driven to murder by the awfulness of her situation. This Way of Life lists 38 people who were killed because they were autistic. Most of their killers received modest sentences, if they were sentenced at all. But in Katie’s case attempts to present Karen as the victim of her daughter’s autism were forestalled by the rest of Katie’s family.

Showing enormous strength and dignity, Katie’s grandfather Mike McCarron stepped forward to demonstrate that Katie was loved and accepted by all her family, all that is except her mother. Katie was a source of joy to all who knew her, all that is except her mother. I discussed the reasons for this in my earlier post when Karen was found guilty.

Karen believed that autism was the most terrible thing that could happen to Katie, that autism was worse than cancer. She believed those who told her that vaccines caused autism and blamed herself for allowing Katie to be vaccinated. She believed those who told her they could cure Katie’s autism. And when the cure did not work she saw no future for herself with an autistic daughter. Karen’s crime was a selfsh act, committed because she wanted a life without autism.

In the world of autism there is often a rift between those like myself who argue for autism acceptance and those who believe they owe it to their children to look for a cure.  But parents like Karen McCarron are a special case and I have no desire to exploit her wickedness to berate the biomedical community. I believe that to do so would be to mirror the disrespectful behaviour of those self appointed autism advocates who tried to exploit Katie’s death.

I  give the last word to Paul McCarron, Katie’s father, who greeted the guilty verdict thus

 “I ask all parents especially those of children with disabilities to ALWAYS love your children and be proud of them. Cherish every moment you have with them. Love, patience and tender efforts are the best therapies.”

April 1st, 2008 Posted by Mike | Autism | 5 comments