Researchers found nearly one percent of Britons older than 16 years have autism, a rate that is similar to that seen in children. Younger people were no more likely to be affected than older ones, however, which would have been expected if the condition were truly on the increase.
Fears that the condition is becoming more and more common in children have launched both researchers and parents on a fierce search for the underlying reasons.
So far those efforts haven’t paid off, however, and the much-reported claim that childhood vaccines could be the culprit has been widely discredited.
…
“None of them had been diagnosed (previously) with autism,” he said. “I think for me the issue is that people have been ignoring autism in adulthood and only focusing on children.”
I can’t recall the amount of times over the last 10 years or so that people have accused me, or other writers on this blog of saying that autism is ‘merely’ a difference. Its a lot of times however, and every time they say it, its still wrong. Both in fact and idea. I’ve never said autism is merely a difference or just a difference. I think it is also a disability.
However, even that is not the truth in my opinion. The truth is that autism is a spectrum. I think however, that a lot of people perceive a spectrum as a ‘straight-line’ type idea with a definite start and a definite end. Thats not how I see it. I see it more as something like light refracted through a prism creating a rainbow of colours. With these colours one can make a near infinite range of hues and shades.
And that is also how I see the autistic spectrum. It doesn’t begin with severe autism and end with very high functioning autism or vice versa. It is comprised of individuals that each are their own hue and shade, made up of differing components of the spectrum. Something that doesn’t have a beginning or an end but an ever shifting array of possibilities.
So an autistic person may have very severe autism but not have an intellectual disability. A different autistic person may function very well socially but not very well with eye contact. Yet another individual may have epilepsy and Aspergers. I don’t see how, in such a scenario one can say autism is ‘just’ or ‘merely’ anything. For a lot of autistic people, their autism is a disabling condition and also a difference they may cherish. For others, they may hate the way their autism affects them.
What I advocate for is the preservation of an autistic individuals personal right to be who they are. If they want to advocate for their autism and fellow autistic peers, who are we non-autistics to judge? It doesn’t matter to me if that person is someone who loves or hates their autism. As an autistic individual they have every right to speak for themselves and for others who are like-minded.
My own belief is that with self-confidence and the support of family, friends and professionals, an autistic person can have a world of options open to them. Those options _may_ be limited by the spectrum of difference autism has abled/disabled them with and they may also be limited by the society in which they live but I believe there is always options, always choice and always hope.
Before I started blogging here, I had started a website. The site is now being promoted as my secret life as a curbie. I’ve tried to find the archive of the site and the backup of the blog. Then it struck me, you can see snapshots of how the site looked with the wayback machine. At some point after I started blogging here at LeftBrain/RightBrain, I added a blog to my website. Sort of a spin-off that didn’t really take. You can find that on the archive as well.
The main website gathered a lot of criticism from people I respect so I took it down with the intent or rewriting it at some point. As you can see, that never happened. I invite you to go look for yourself.
Past criticism included:
1) promotion of ABA in general
2) lack of a good description of the fact that early autism diagnoses may not be stable, so studies claiming benefit based on changes in diagnosis are suspect
3) since many studies use changes in diagnoses, they promote a “cure is better” model
4) There isn’t a strong enough statement against using ABA (and like therapies) for trying to extinguish autistic traits and “normalize” autistics
4) links to other sites that are considered offensive to some (e.g. FEAT, ASAT)
There was more. Let me know your criticism.
If your criticism is, “but you are so anti treatment now!”, take a moment first. That is such a strawman. There is a big difference between being (a) treatments which are untested for efficacy or safety (or have known serious side effects) and (b) treatments which have some sound basis for how they work, have some efficacy data and have safety data.
Unfortunately, there are a lot of the former and very few of the latter.
This isn’t new, nor something hidden. I’ve written here on LeftBrain/RightBrain about clinical trials, for example. Our family has even participated in a clinical trial. We were able to look at the proposed mechanism (which wasn’t particularly strong, I admit), and the previous studies and, most importantly, the safety data. And it was a study–our participation would be used to gather data which could help out the greater community by stating whether the treatment was beneficial or not. We weren’t trying to gather anecdotes for advertisements.
One problem with keeping to a pseudonym and keeping private is that it allows for strawmen to be built. There is a big strawman that I (and others) are against any and all forms of treatment. I doubt the strawmen will go away anytime soon. They are so much easier to fight than facts.
A recent Guardian Roundtable touched on an interesting subject for those of us who are responsible for children with learning difficulties. The article was written, sourced and published in the UK but I believe it applies everywhere in the world where there are children with learning difficulties.
Just 6.4% of people with learning disabilities are in paid employment and that stark statistic – and the shocking waste of financial (and human) resources behind it – formed the backdrop for a recent Guardian roundtable discussion.
This issue has its root, I believe, in the way we are led to think about our children from birth:
When it comes to setting expectations for a child with learning disabilities, things can start to go wrong the moment they are born. The roundtable heard how health staff use their “breaking bad news” training to counsel parents, leaving them with the impression that there’s not much incentive to look forward to the future.
I remember the day we received the news that our child was autistic with profound learning difficulties. There were 3 calm staff members and a box of tissues on the table. By the time we left, the tissues had been used – and although the staff were gentle, kind and wonderful people who clearly were fond of our child – they too fell into that trap of ‘breaking bad news’ mode. A mode that, by its very tenor, fulfills the expectation of _being_ bad news.
The truth is, in my opinion, that with a little effort from health care agencies we can move from:
staff at one special school who, when the issue of employment was raised, replied: “That’s not for our kids.”
to a de facto position as espoused by agencies like Remploy who are the UK’s leading provider of employment services to people with disabilities.
But we’re not anywhere near that yet. In my own experience too many parents of people with special needs are content to wallow in the comfort of ‘putting it off’ – their children are still young. But consider this – we are far longer a time adults than we are children. Our children need to learn how to function in the world. This won’t be brought about by sham cures and ideaslistic fights against a strawman army. Neither will it be brought about by those who insist on misrepresenting the nature of what autism is to all rather than some.
One speaker summed up the fundamental question underpinning the whole debate: “Do we believe that people with learning disabilities and their families are worth it?”
Are they worth the upheaval and political effort it would take to transform a system that often fails them when it come to finding work?
In any society that claims to be fair, children with learning disabilities surely deserve the same life chances as other young people, the roundtable heard. They should be encouraged to have ambition
The iPad and autism: it’s a story that has picked up a lot of momentum in the media. One person who has told the story, and told it very well, is Shannon Rosa (of Squidalicious and The Thinking Person’s Guide to Autism). Her family won an iPad in a raffle and it has been “a force for good” for her son Leo ever since. Well, Leo has an iPad 2 (which I’m sure he shares with his sisters) and Shannon is passing on the “force for good” through a raffle of her own. She goes into details on her blog in a piece: Leo’s iPad Raffle.
Here are the basic details: $10 per ticket, purchased online for a chance to win a used iPad. This is the iPad used by the Leo in the video Apple produced to commemorate year one of the iPad:
Proceeds to benefit the Autism Science Foundation as a thank you for supporting Shannon’s travel expenses to attend IMFAR this year.
I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract.
That abstract was briefly, and mistakenly, posted online so I chose that time to acknowledge my identity. As it turns out the abstracts are still under embargo and, as such, I have pulled the remainder of this article. I will repost once the embargo is lifted.
Back in 2010, Age of Autism’s Inspector Clouseau, summed up the following about Sullivan:
1) Female
2) American
3) A doctor or scientist
4) Not the parent of an autistic child.
5) Is actually Paul Offit’s wife Bonnie.
And followed up with this promise:
If you can produce a dad with a child with autism with a remarkable grasp of the medical and scientific literature who blogs under the name Sullivan, a man who has an inordinate grasp of the details of your husband’s patents, lawsuits, published studies, and web habits, I will make sure that the pauloffit.com website is given to you and your husband for good.
In fact, if you can produce this father, I promise to never, ever publicly write about or utter the name “Paul Offit” again.
I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract: Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.
The abstract in question is:
Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey. M. J. Carey
M.J. Carey, of course being LB/RB’s own Matt Carey.
So, now we turn back to JB Handley – are you ready to both hand over both the domain and your word to never mention in word or speech the name Paul Offit again JB?
Dr. Ricardo Dolmetsch is a professor at Stanford University. He is one of the keynote speakers for the IMFAR conference. Recently, Tom Insel, director of the National Institute of Mental Health interviewed Prof. Dolmetsch on his work. The video is up on the NIMH website, and I embeded it here.
I’m sure when many people read “stem cell possibilities” they are going to wonder if this is about stem cell therapy. No, there is no stem cell therapy for autism at present. What Prof. Dolmetsch is doing is taking skin cells and converting them into brain cells. He can then compare brain cells from autistic and non-autistic individuals and look for differences.
The idea is very interesting. If this method really does represent the brain cells in the individual, it would give some indication of the operation of those cells. What it probably won’t do, I suspect, is give an indication of long range connectivity or size of individual structures (e.g. corpus callosum, amygdala, etc.).
As you will hear (or read), Prof. Dolmetsch started working on autism after one of his children was diagnosed.
Here is the transcript:
Transcript
Announcer: NIH Radio… from Bethesda.
Announcer: Recently, Dr. Ricardo Dolmetsch, an associate professor of neurobiology at Stanford, spoke with National Institute of Mental Health Director Dr. Thomas Insel. Devoted to Autism Spectrum Disorder research, Dr. Dolmetsch and his colleagues have generated stem cells from children with autism allowing them to study how the brain develops in children with ASD.
Dr. Thomas Insel: I thought a good place to begin the conversation was to ask you about your interest in autism and how that happened. You’re someone who trained in calcium channels… worked on very basic problems in molecular biology and now you’re interested in autism…
Dr. Ricardo Dolmetsch: Right, when I first got to Stanford I was interested in a very basic question.. and um.. you know for a few years we worked on that and that was really exciting but it was very arcane. And then about I guess four and a half years ago, our son was diagnosed with autism. And so this really changed my…the direction of my lab. Actually, what really happened was that my wife and I got together and we thought a little bit about what we could do and we came up with a bunch of projects and one of the ideas was that we were going to just change all of our efforts and that’s how we started working on autism.
Dr. Thomas Insel: I know what you’re working on now has to do with induced pluripotent stem cells. And that’s a bit magical for many people… the idea that you can create a stem cell from skin or from some other differentiated cell. Can you explain what that is and how you think that will be helpful for studying autism?
Dr. Ricardo Dolmetsch: Our whole idea of development is that development is sort of a directional arrow. It’s kind of like spilling water. You can spill water but you can’t unspill water. And we sort of thought development went to the same way. You start out with an egg and you end up with a human- you don’t go backwards. But it turns out that that’s not quite true. So, this pioneering Japanese group led by Dr. Yamanaka developed this system that allows you to take for example skin cell or blood cell and convert it into a stem cell. And the way you do this is you introduce these four proteins that do something mysterious that nobody completely understands and it changes the cell and makes it into a stem cell. And that stem cell has the capacity to make every cell in your body including brain cells.
Dr. Thomas Insel: So you can make brain cells from the skin or blood cells of a child with autism.
Dr. Ricardo Dolmetsch: Exactly, so what this allows you to do then is you can then take.. for the very first time… you can make these tissues that you wouldn’t be able to access normally. So, so you can take the skin cells of a child with autism and you can make stem cells from those skin cells and then you can take those stem cells and you can differenciate them to generate basically little pieces of brain. And then you can analyze the development of those cells as well as their function once they’re mature and so this gives you insights that you wouldn’t have any other way.
Dr. Thomas Insel: So, when you do this in autism how do those brain cells that you derieve from skin differ in children with autism versus kids who don’t have autism.
Dr. Ricardo Dolmetsch: Well, this is something we’re still working on, right and I think we’re still at the very beginning. I think that the short answer is that we have so far only looked at a couple classes of autism and in those classes of autism we have learned something about how development is changing. So for example in one case we know that these kids are making too many cells that produce dopamine and norepinephrine. Dopamine and norepinephrine are these really important neurotransmitters that are important for motivation, attention and pleasure and for some reason these children are making too many of them and they’re turning on the pathways that generate these neurotransmitters in the wrong cells. And so, that…. I mean just knowing that gives you a target- gives you something to target therapeutically.
Dr. Thomas Insel: Is there some way in which having the stem cells the way you describe is going to help us to develop new therapeutics?
Dr. Ricardo Dolmetsch: Oh absolutely. So, so…. this is the thing, right? We need to understand what is going wrong. And things are going wrong at multiple levels. So, so… we know for example.. so the first sort of level of understanding is we have to figure out what the genes are. We’ve started to identify many of the genes. The next level of understanding is we have to understand how those genes are actually changing the function and development of the cells and that is what we are working on-what we have developed. Now, once you know what is wrong with the cells you can then look for ways to reverse that.
Dr. Thomas Insel: I can’t help but ask the question.. how you done this with your own son? Have you taken skin cells and created stem cells from him?
Dr. Ricardo Dolmetsch: We have. And we have sequences genome as well as ours. And you know, I mean, it’s um… it’s a difficult project to have in your own lab. Um… in a way.. you really want to know. And in a way you really wish.. you really hope that what you find is not too terrible. But absolutely, this is one of the motivations- not the only motivation. I think one of the things I’ve discovered in working on autism I’ve met many families – it’s been that it motivates you in a way that… you know… is difficult to explain and in a way I never would have expected when I was being trained as a very basic scientist.
Today, JB Handley, founder of Generation Rescue became the latest person at Age of Autism to abuse a man with a psychiatric disorder.
Shouldn’t we celebrate that Mr. Mnookin claims to be sober? Sure we should. Beating a heroin addiction is a laudable outcome. That being said, I sure wouldn’t hire Mr. Mnookin in one of my companies, let him watch my kids, or go to him for parenting advice. He was a garden-variety junkie who stole money from friends and family, sorry.
Give with one hand, take with the other.
I don;t ever seem to recall such vitriol for another former heroin addict. In fact, for _this_ former heroin addict, JB Handley said:
I wept when I read RFK Jr’s piece yesterday on the Huffington Post…
As far as I can tell, the only difference between Mnookin and Kennedy is that Mnookin is man enough to discuss his addiction up front and personal.
JB Handley and his ilk idolise Kennedy because he’s on their side. If Seth Mnookin had written a very different book, you can bet that his former addiction wouldn’t count for a damn thing. I wonder if JB would hire Kennedy, let him watch his kids or go to him for parenting advice? Because according to JB’s standards, Kennedy is just another garden variety junkie.
I believe both Mnookin and Kennedy deserve credit for fighting a fight that JB Handley can neither envisage nor learn from. What neither of these two men deserve is to be judged on their past. I look forward to reading an AoA article on Seth that describes what is wrong with his writings rather than what he used to do as a young man.
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