Sunday, March 29, 2009

jenny mccarthy: more ammo for angry neurodiversitites?

I have just read an interesting piece about Jenny McCarthy . These are some stories that her ex-husband are claiming about some rather salacious sexual exploits that Ms. McCarthy was involved in. As most persons interested in autism know, Jenny McCarthy has a son with this ex who has been diagnosed as autistic (the son not the ex). She has embraced biomed treatments and the rather notorious generation rescue run by the litigation happy J.B. Handley. She is now claiming that chelation and other biomed treatments have cured her son as well as other questionable allegations.

Though I despise the neurodiversity movement, I do agree with them that McCarthy is doing harm and giving parents false hope. However, I do believe she is a mother who has the best intentions and wants to help her child and other children. She does seem to provoke the ire of the neurodiversity movement and autism diva once called her Jenny McDumbbell. Since ND's often want to engage in personal attacks I suspect they may use this article as further ammo.

On an interesting side note I met Jenny McCarthy at a DAN conference. DAN conferences are not something I would normally attend and I would probably never go to one again, but Stephen Shore who is a friend of mine was presenting at one relatively close to where I live, so I checked it out. McCarthy had stated on the Larry King show that she had never met any autistic adults. Steve, a girl named Kelly, and myself were the first adults with autism that McCarthy met. When I pointed that out to her, her response was "you guys are awesome".

Also interesting is the last line of the article with John Asher, McCarthy's ex, making the comment that having an autistic child either brings the parents closer together or pulls them apart. It would seem that he is implying that their son's autism is responsible for their divorce- I kinda suspect that's going to rattle the cage of ND just a smidgen.


Anthony Cole said...

Hi Jonathan
I surfed here from .
I'm a 56-year-old male who has only lately realised I'm autistic. Over the last couple of years I've been reading some text books and heaps of peer-reviewed papers on the subject trying to grasp what is the present state of evidence-based knowledge. I think I've fairly well got my mind around that. Now I am gingerly dipping my toe into the autism blogosphere and it is dawning on me that there is a political controversy along the lines of the "deafness: disabled or different?" debate which erupted a decade ago. Initially I was thinking this is all a bit trivial. But I suppose the power in the debate stems from the allocation of funding.
Is there a book or web page you would recommend that might bring me up to speed on the issues and players? I'll check back here in a day or so, or you can email me if you like. My user name is ahcole and the at part is at


SM69 said...

Just a few facts/ reviews of papers on the impact of autism in family to steer things up - Of course one might reject all of this to say it is invalid, but the issues reviewed below have a cartain reality none the less and will impact one way or another.

That was a review I had conducted a few years ago to survey the type of holiday families of ASD kids experience in Scotland compare to DS. The conclusions were a little scary- I can explain for those interested, but on the topics of divorce etc here are a few facts:

Research on autism indicates that parents of children with autism have a significantly increased risk in experiencing psychological difficulties and stress than parents of non-disabled children (Hare et al., 2004, Fombonne et al 2001) and parents of children with mental retardation and Down Syndrome (Holroyd & McArthur, 1976; Donovan, 1988). A large proportion of parents (81.9%) reported to be stretched beyond their limits (Sharpley et al. 1997). Increased divorce rates are reported, with 1 in 3 families breaking up in the UK (Bromley et al 2002), though the figure most commonly reported in the media is of 8 out of 10 marriages with an autistic child breaking up.

The level of psychological distress was found to relate to the level of behavioural impairments of the ASD child, deficit in social and communication and play skills, as well as general lack of family support. A National Health Interview Survey conducted in the United States in the years 2003-2004 on a sample of parents of 102 children with autism, indicated that 43% of children had emotional symptoms, 34% had conduct problems, 65% had hyperactivity issues, 82% had peer problems (CDC report 2006). Five main categories of conduct problems are typically seen; violence and aggression to others, self injurious behaviour, destructive behaviour, repetitive and stereotyped behaviour, disruptive and antisocial behaviour.

Maladaptive behaviours may prevent families from attending events together. For example, the mother might have to stay home while the father takes the sibling to a football game. Not being able to do things as a family can impact on the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch the disabled child in their absence. Additionally, the responses of fathers and mothers to the disability of a child with autism display different levels of perceived stress and impaired health (Allik et al., 2006, Little 2002, Gray 2003), potentially causing further issues of conflict.

A further significant stress factor experienced by parents of a child with autism relates to the recognised increased cost of living particularly for parents who are unable to work due to their caring requirement (Loynes 2001, Jarbrink and Knapp, 2001). Additional factors impacting on the family relate to the lack of suitable services and supportive structures. Families experience frustration with regard to the long process of obtaining a diagnosis, the lack of public knowledge of autism, the lack of acceptance of autistic behaviour by society and sometimes by family members, and the very low level of social support (Kamisky and Dewey, 2002, Gray 2003, Sharpley etal., 1997). A recent National Survey of Children’s Health conducted in the United States further confirmed that families of children with chronic problems had diminished family functioning, more school absences, less participation in community activities, difficulties with child care, employment and parental skills (Blanchard et al., 2006).

For the siblings, there are also many potential sources of stress though not all siblings will experience these issues: feelings of anger, guilt, embarrassment, jealousy, being the target of aggressive behaviours, loneliness, concern regarding their parents stress and grief and concern over their role in care giving, have been reported (Anon 1998, Bagenholm and Gillberg, 1991).

To conclude, families with ASD children are vulnerable because of the nature and permanency of autism, overall isolation of the family, lack of support and limited financial resources. Each family member is impacted differently by autism and often a fracture exists between spouses. According to the American Academy of Paediatrics, “Families are the most central and enduring influence in children’s lives… the health and well-being of children is inextricably linked to their parent’s physical, emotional and social health, social experience and child rearing practices” (Schor, 2003). It is therefore possible that the overall dysfunction of the families with an ASD child further impact the development of the ASD child and his or her siblings.

SM69 said...

I thought I should add a more humane comment to your post, on the issue of divorce in ASD families.

Children can be a challenge to many couples, ASD ones even more so. Often parents experience for the first time what it is to be with a child as they start a family, there are many surprises on the ways, many good ones and some more challenging. Because men and women are not equal but rather complementary, they most of the time respond to challenges differently. Not one is better than the other, they are just different, both have rationales. Most of the times these differences are welcome and beneficial to the couple, however, at times, the differences are so large, regarding things that are so important- children, that a compromise cannot be reached. Usually the mother does not compromise to lesser care, she is more in touch with the child and will have greater intuitive sense of how best to protect and nurture that child (her genetic make up selected her for this and the father tend to select her for these traits too). It’s not always the case, some fathers can be more in touch than mothers. But if decisions and support are needed from both sides, and they happen only from one, or one always conteracts the other, blocking any type of progress, there is a fracture. At first the fracture is almost invisible. But with time, it tends to grow wider. Until the parents found themselves alone with each others, with limited intimacy, occasional sexuality, increased frustrations and diverted anger. It takes a lot of effort to rebuild relationships like these, especially if there are many ways to escape outside the marriage, I don't mean in adultry, but in thoughts, to work etc. Often it is easier to depart, and this is what a majority of couples do when they have understood that cannot go on like this.

The trouble is that these parents did not know each others under these novel settings, they did not know that they would become different in their answers. But once you know how you deal with certain things and learn, I think then, one should be able to make better choices, choices that will be OK for the child as long as dealt with openly, with trust and without fear.

I am not commenting on Jenny McCarty, because as you mentioned, I don’t believe in personal attacks… other than directed towards SBC that is.

jonathan said...

Hi SM69: I published both of your posts. However, don't be surprised if you get some angry responses from some of the neurodiversites that read this blog from time to time.

SM69 said...

Thanks Jonathan. I reported on the published opinions of others on the impact of autism on families. Not my opinion for what happens in my own family. Those who know me and my video work for example would know how I have responded personally to include and support autism.

But to deny the fact that many families as represented in these studies have difficulties is to deny a certain reality, what I am most concerned about is the reality of the autistic people in these situations. The answers to this reality are no to abolish autism but to provide the assistance and understanding needed.

Foresam seems to have poor (if at all) lines of arguments; his blog witnessed his extreme limitation in the understanding autism and of a dangerous extremist and discriminatory mind. The thought that a country could be defended by including people with this type of personality is disturbing.

John Best said...

As an ex soldier, the object of conflict is to kill the enemy. Autism is an enemy and it should be wiped off the earth by curing everyone who has it and preventing it from happening to anyone else.

People who get in the way of us curing autism...just shoot them.

jonathan said...

SM69, if you don't want to cure your son fine. If you have a solution as to how an autistic can have a completely decent life, free of challenges without a cure, then since you are a ph.d. scientist you ought to publish it in a peer reviewed journal. Unlike yourself, I am too impaired to get a ph.d. and do scientific research. I don't believe anyone has come up with an answer to the problems of the autistic that would obviate the need for a cure so i must agree with Foresam that abolishing it would be a good thing. If someone is a consenting adult and does not want a cure, I am fine with that.

Though I don't agree with Best's statement about shooting people, we are in a metaphorical war in the USA with the combating autism act being passed so the elected officials americans have voted for have decided we want to spend tax dollars and have government intervention with the intent of preventing and curing autism.

I don't agree with a lot of john best's behavior and tactics. But you have to understand this is a man with a severely autistic son who can hardly speak, smears feces on the wall etc. I don't blame him one bit for the anger and contempt he has towards these people which I share with him, though I would not recommend shooting them. However, since we are at the moral equivalent of war with autism in the USA, it could be argued that a lot of the activities the ND's are doing are treason. We do have federal statutes prohibting treason in the USA, something to think about.

SM69 said...

There is another difference between your view J and the one of Foresam, the difference is that you make a judgment and a choice regarding your own person, he does it towards his son primarily. I cannot possibly agree with these views and I cannot but have great concerns for the consequences they will have on his children, autistic or not. I meet many families of autistic kids, I have met maybe 400 or so, whilst we are focusing on medical issues that can be identify and which we know contribute to developmental and well being difficulties, other issues are also looked at. I have never met such extreme rejection towards autism, but I can guaranty one thing, that is if even I would see 1% of that level of hatred, I would address it, question it, challenge it and hopefully give means to parents to change their own perspective on their child, because it cannot be beneficial to him, it just cannot.

You must have heard autistic people saying they are not a person with autism but an autistic person. I have heard even children as young as 9 year old saying this, children who have not been influenced by what others like themselves or the ND movement says. They cannot conceive themselves as a person + a condition that could somehow be separated from. They perceive themselves as whole. This view needs to be respected. I understand it and I accept if fully.

I have just read “The Reader” from Bernhard Schlink, for people not familiar with the story, Hannah is on trial for having guarded a SS camp, she is accused of having denied freedom to women prisoners trapped in a fire, not unlocking the door allowing them to escape and for having reported in writing the events to falsify its cruel reality. At first she said she did not write the report (which was the case), but when confronted with the need to check her handwriting, she fears her illiteracy will be identified and prefers to admit to an offense she has not done, causing her life imprisonment. Her younger lover is a law student who attended to the whole trial. He realizes that she was not willing to earn victory at the price of exposure as an illiterate. He understood everything, he had the power to present his views to the judge, but he questioned the morality of his options greatly. Eventually he approached his father who was a philosopher. The father said “but with adults I see absolutely no reason for setting other people’s views of what is good for them above their own ideas of what is good for themselves”. The son replied: “not even if they themselves are happy about it later?”. The father answered, “We are not talking about happiness, we’re talking about dignity and freedom. Even as a little boy, you knew the difference. It was no comfort to you that your mother was always right”.

Anonymous said...

Good video of Jenny

jonathan said...

I see absolutely no reason for setting other people’s views of what is good for them above their own ideas of what is good for themselves”.

This is a real problem I have with the ND movement. The constantly speak for all or most autistics, they try to impose what is their own individual view on everyone and all families and insist that their minority view is the view of everyone.

John Best said...

I had the same extreme rejection of slicing a golf ball. I conquered it. I learned from my mistakes so now I can slice a golf ball with extreme precision when I want to to avoid obstacles.

My son was born perfect. He did not have one symptom of autism until after thimerosal attacked his brain and mangled it. I'm a perfectionist. I will never accept anything less than giving him back the full mental capacity he was born with. I may not succeed but I will die trying. Anything less makes me a failure as a father.

In the meantime, I love my son for what he is and as he is. As with all children, you love them as infants who can do nothing for themselves. You watch them grow and you love them through each stage of that development. You don't quit helping them improve themselves and expect them to remain in an infantile state.

You and your ilk accept failure. Failure is unacceptable to me.

John Best said...

You can get the same advice that Atwood gives from a fortune cookie, or a fortune teller.

I think young people gain the right to refuse a cure when their parents decide they aren't too screwed up to go through life without help.

SM69 said...

Well, it is nice to know that you are not just a rock face with no heart. Whilst the association between mercury and autism may be playing a role in the course of development for some individuals, it’s not easy to prove that this is indeed the case to anyone specifically, unless the exposure is so great. There is a great deal of misinformation going about mercury and its implication in autism. I am not saying that mercury is a harm-less compound, it is not, and it must never have been injected in anyone. But I am saying that what your son has been affected by can be other things too, or combination of them and almost certainly he is genetically susceptible to this. It can also be mostly genetic even with a regression. The truth is that you don’t know, and right now we don’t have the tools to know for sure. But we have are ways to look comprehensibly at potential problems, and to be comprehensive is essential, this is why I especially dislike the mercury only theory- it is not sufficiently comprehensive to encapsulate every aspects of today’s autism. In addition to this, I am afraid, but you and I and others like us have also to deal with sorrow, with unfilled hopes, with anger, despair, we have to find the way to deal with this because I am afraid, these do not help, unless all people like you actually step in the street and make their voice yet even louder and ask for radical changes to our livings (well beyond mercury). Dealing with these emotions is not aiming at damping the right of investigations but to help your child.

One grand-father of an autistic child who also regressed after vaccination, I know very well, was and to some extent is always angry about that situation. Often I have seen him torn to pieces, could not tolerate the situation his grand-son was in. He was because of this totally unable to relate, prefering to move away. No matter what happens to that child, this child exist and what is best for him? A grand-father who cannot relate or someone who is in touch, listening and attentive, even if in different ways? That is something I have tried to press on times and times over. Now, (nothing to do with me, but more to the evolution this man made), he is in touch, he takes him for long walks on the hills, go ride a bike, 10 miles or more, and taught him to fish… What do you think is best for that child? Anger or acceptance?

Acceptance is not compliance, acceptance is unconditional love. No matter what, that is love these people deserve, no matter what. And with this, respect, and with this, care for all their health and educational needs.

Hey Jonathan, peer reviewed publications, that sounds like a bullying comment to me, but no offence, an easy one I forgive you to have made. Actually, I am at peace with this. I have priorities in my life and publications is priority Nb4, i.e. I want the first 3 before getting at Nb 4. Nb is my family, Nb 2 is me (hey bloody selfish!, having fun, being creative and happy in the way I like to be), Nb 3 is finding funding (and I tell you I am kicking my ass big way at the moment, I have a lot on my shoulders) and Nb 4 is publications. And I tell you what, I am going to succeed at these 4 things, even though it’s actually much harder to succeed outside University setting, you appreciate this I presume from your sister’s work, but no excuse, I will make it., but with priorities, I will try my best, that's all I can do.

Anonymous said...

"Beyond that you people seem to recognize that HFA/AS people should deserve the right to refuse a cure.. the question I have always had is when do they gain such a right?"

That's exactly the problem I have with anyone involved with neurodiversity. It just comes to show you they're angry people (as a result of being disabled) who want to be cured from the bottom of their hearts and resent the fact they're misunderstood by NTs.

There's a concept called 'moving forward' with your life, but it's obvious no one is doing so. At least I have ambitions to want to do well in life, so I see a speech pathologist to work on as many coping strategies, social skills, and pragmatic training skills as possible. Maybe I'll try neurofeedback one day. I know I haven't reached my fullest potential to have the most positive attitude on Earth, but aren't we all human?

I should be finding better things to do than spending a huge chunk of time dealing with autism on the Internet, but I'll still keep in touch with you, Jonathan. Hopefully your self-esteem will improve dramically within some time, but you should think about what I said.

SM69 said...

The post I had written a few days ago concerning Tony Attwood and the discrepancy there is between portraying a positive image of autism and for those on the Spectrum to actually feel positively about themselves, but it got lost. My brain is too tired from work to write it again or even to think afresh about autism. Instead I chose to open the book of poetry from Brian Turner “Here Bullet” I have just received, randomly. I have not yet received your sister’s book, but it should be coming soon. You may wish not to publish this post as it is totally off topic, or you may enjoy the break and diversion as I have. This is not a tease, but I find this so strong and touching that I cannot refrain from sharing.

Last Night’s Dream

(Brian Turner/ Here Bullet, ISBN: 978 1 85224 7997)

In the dream her breasts become confused in my lips, I shoot an azimuth to her navel while her fingerprints touch me with concussions, as if explosives rang through the nerves of my body, as if I am strung with wire, a huge receiver of UHF radio transmissions, frequency hopping with our tongues as we kiss and I slide into her with a sound of flashbang grenades that make her eyes cloud over in smoke from the heat of it.

In the dream she kisses Arabic into my skin and I understand every word of it, I transcribe it backwards into cuneiform and stone, I rename the arteries and veins for every river and wadi from Dohuk north to Basra south, I feel for this geography of pleasure, my tongue is a marker that writes even in the rain, even in the salt and sweat, and I write with it now, over every curve and turn of her body.

In the dream our orgasm destroys a nation, it leaves thermites and gunpowder in the air above us, a crackling of radio static as we kiss on, long into the denouement of skin and fire, where medevac helicopters fly in the dark caverns of our lungs in search of the wounded, and we breathe them one too another, a deep rotorwash of pain and bandages.

PS- I thought I should clarify Brian Turner is American (not French, obviously).