Latest Developments in Global Autism Scientific Research and Advocacy and A Special Preview of the World Autism Awareness Day (April 2) Announcement
1:00, P.M., EDTAudioMODERATOR:
Okay. One, we’re going to begin, and I want to thank everybody who is in attendance today – to join us for this roundtable briefing.
An estimated 67 million people worldwide have an autism spectrum disorder. Autism Speaks is the world’s largest autism, science, and advocacy organization. It’s dedicated to funding research, increasing awareness, and advocating for the needs of individuals with autism.
Our guests today include Mr. and Mrs. Bob and Suzanne Wright, the co-founders of Autism Speaks, and they will provide us with an update of the latest developments in global autism research and advocacy. And to begin, I’m going to turn this over to the president of Autism Speaks Mark Roithmayr, who will emcee and introduce everybody for you. Thank you.MR. ROITHMAYR:
First and foremost, it’s a pleasure to be here today and I want to thank Mark and the Center for hosting us today, and I want to thank all of you for being here. It’s an exciting day. It’s really an eve of a day for us because tomorrow is the second Annual World Autism Awareness Day, April 2, as declared by the United Nations. So we are on the eve on that, and to kind of kick off our efforts here with you today just seems to be very appropriate.
I want to tell you that Autism Speaks began four years ago. We celebrated our fourth anniversary in February of 2009, founded by Suzanne and Bob Wright, and this was within a year after their grandson, Christian, getting a diagnosis that he was with autism. And Suzanne and Bob and their family spent a better part of a year of understanding what autism was, what were the services that could be provided to their grandson, and really kind of went around the United States to understand that, because Suzanne and Bob and their family had the ability to do that, and to see what was best to get their grandson as settled as best as he could.
The better part of that year – at the end of that journey, Suzanne and Bob were struck by several things. In addition to what this impact had on their own family – which was, at the time, in the United States, the prevalence of autism was 1 in 166 children were being diagnosed with autism, and that figure today is 1 in 150, and actually 1 in 94 boys – but they were struck by here is this prevalence of autism that no one in the United States was really talking about.
Another thing that they were struck by were all the families they met in their journey. And at the end of their journey, who was taking care of those families? Who was speaking up for those families? And it was out of that that Suzanne and Bob started Autism Speaks. And, again, that was in, officially, February of 2005.
And the beginnings of the journey for Autism Speaks – Suzanne and Bob founded Autism Speaks really on three principles: that funds that were raised would be spent on and would be about science; and, two, it would be about providing a voice for all of these families that they met along the way; and three – and at the time this may have been uniquely American – but three was to invite the general public to come in and be part of this cause. Because when you look at 1 in 150 children, 1 in 94 boys, if this wasn’t in your immediate family, well, then certainly it was touching your neighbors, your friends, your coworkers. So it was time to begin a more national dialogue on that.
I guess the fourth piece of that at the time – and this is further about the science – the decision was made that, you know, autism had been under-funded from a research or a scientific perspective, and not only here in the United States, but in the world, and that when you looked at science there was this belief that one could hurry science, that – if you centralized it and did it in a more concentrated fashion. And the thought that came out of that was, were there other groups to merge with that were concentrated on the science? And there were 3 other groups in over a 20-month period, which really began in August of 2005 and went through February of 2007. Autism Speaks merged with three other groups that were involved with funding science.
And I guess the thing that came with science, that brings us to the international span, is that science knows no borders. When you’re funding the best quality science that you can, you will fund that anywhere in the world. And so, with these three organizations that merged in, they were already funding science globally.
The other thing that came with one of the mergers, there were two international offices that came. So today you have – there is an Autism Speaks Canada that is in Toronto, and there is an Autism Speaks UK, that is an affiliate office that is in London for us today.
But the concept of Autism Speaks – and you will hear much about it today – it’s really about two things: it’s about our science, and it’s about our families; and, what can we do to take science from discovery to deliver to improve the lives of our families?
And with this, now, I am going to officially turn it over to Suzanne and Bob Wright, who – these are the founders of Autism Speaks. I tell their story, but also can bring us up to, from there, how did we get to a World Autism Day and all the efforts that we’re doing now.
So, Suzanne?MS. WRIGHT:
Thank you, Mark. MODERATOR:
Do you want to just take a quick look at the (inaudible)?MS. WRIGHT:
I’m sorry. As part of World Autism Awareness Day, we have several first ladies who have taped public service announcements.
(Video is played.)MS. WRIGHT:
Well, thank you all for coming. I’m Suzanne Wright, and my dear husband Bob. I’d like to, first, start asking you what countries you’re from.QUESTION:
I’m from the United Kingdom.MS. WRIGHT:
(Inaudible.) MS. WRIGHT:
She’s so lovely.QUESTION:
She’s very nice.MS. WRIGHT:
She’s also offered us a – later on in this Autism Awareness Month, she’s offered us to attend Downing Street to have a reception, so we’re going to be getting everybody from the UK involved at this reception.QUESTION:
Right. I’d like to know more about your office in the UK.MS. WRIGHT:
Perhaps later on.MS. WRIGHT:
Later on, sure. And you’re –QUESTION:
I’m from from China.MS. WRIGHT:
China, oh, my goodness. That’s great. We don’t have too many great numbers from China yet.QUESTION:
I’m from a global organization based in New York, working in a hundred countries in different parts of the world.MS. WRIGHT:
A hundred? You sound like Autism Speaks.
(Laughter.) MS. WRIGHT:
India, but based here, in New York.MS. WRIGHT:
India. We’re doing some collaborative studies of prevalence in India.QUESTION:
I’m from Taiwan.MS. WRIGHT:
Taiwan. We’re doing the same there. Right, Andy? In Taiwan as well.QUESTION:
Denmark. We’re doing something in Denmark as well. QUESTION:
Russia. We don’t do anything in Russia right now, no.MR. WRIGHT:
Dr. Kim, would you please join us up here?MS. WRIGHT:
Oh, yes. Dr. –MR. WRIGHT
: Dr. Kim is a researcher in Korea, and she has completed a very large study, which she refuses to –
(Laughter.) MR. WRIGHT:
– refuses to tell us exactly what they’ve found until she can get it published.
I want it to be a surprise.
The First Lady of the United Nations, Mrs. Ban, yes, she has just done a PSA for us as well.
Well, our journey began with our Christian. That was a horrifying experience for me, because we thought we were pretty informed people. Bob was CEO of NBC at the time. And we just could not believe that we didn’t know the prevalence of autism, not only here in the United States, but, then to find out, globally. So we began Autism Speaks and we started this Ad Council campaign, which is autism is much more prevalent than you know. I don’t know if you’ve seen any of our campaigns, but for instance, they have a little boy throwing a baseball and it says, “1 in 25,000 will become a baseball star; 1 in 150 will get autism.”
With that awareness cam (ph), we’re coming up on about 60 – no, where would we be up on that, about? How many –MR. WRIGHT:
166 – MS. WRIGHT:
166 million, 166 million, and that’s only in the 3 years that we’ve started, which is really great. That’s Smokey the Bear drinking and driving, that’s the Ad Council campaign in this country. And the most amazing about that, they’ve done a single disease. They’ve only stuck to, you know, social issues. And here we have our single disease campaign, one of the most successful they’ve had, and it’s been just terrific.
So, they ended out their little story. We get this out there and Her Highness Sheikha Mozah sees this, some of her people here in New York see it, and they invite us to come to Doha to present the Ad Council, and what we have done, funding Autism Speaks. So we get over to Doha – Andy and I went over – and we presented with the Ad Council, and they were very impressed.
And for a country in the Middle East, as you know, it’s very difficult to talk about these social problems, and she was very open to it. She asked us to then help her start an awareness campaign, so we did. And we became her Autism Speaks Middle East, so we had a big ceremony here in New York last year where she came, where her entourage came over, and we announced our partnership. And, with that, we started their awareness campaign, which they have – that they will start tomorrow. They have a huge building, when you get off at the airport in Doha, with this big banner that talks about autism.
Bob, you want to pass it around? We don’t have it on the – you can pass it around. It’s just very impressive.
So then, we – she and I decided we wanted a World Day for autism. And I – you know, sometimes ignorance is bliss. I didn’t have any idea, you know, that this was going to be as difficult as it might be, because in the history of the UN they’ve only have two days for a disease – World AIDS and World Diabetes. Well, we went to the missions with Highness Sheikha Mozah, and also the Arab Emirates, and we were able to get it done. And on December 18th
of last year, we had – the gavel came down at the United Nations and they said that we would have World Autism Awareness Day. That was December 18th
. The first World Autism Day was last year, April 2nd
. So we had to really get going and get some countries involved. But we were very lucky. We were able to get 6 continents and about 30 countries. This year we have 40 on 7 continents.
So it’s been a great journey. And I love the international aspect of it because it’s really a global effort to find the cause and cure of this terrible disorder that’s afflicting the globe. And in London, where we have our office, it’s 1 in 100, and that’s why, when I met with Sarah Brown after I had this wonderful day for autism, I thought I’d have a breakfast at the opening of the General Assembly, the 63rd
General Assembly, and we invited first ladies of the world and Sarah came, and many first ladies of the world. And it was standing room only because I invited everybody. I met someone from Russia. I met someone from China, from their missions, and it was just fantastic. So I’m going to have it again this year. But as a result of that, we were able to get many of the first ladies of the world to make these PSAs for us.
Let me hand it over to you for a minute, Bob.MR. WRIGHT:
One of the things we found out is – about autism, there’s a lot of things that are counterintuitive here. I was – I’ve been fortunate to be well traveled in my business career, long before I got involved in autism. And, you know, people never brought up autism outside the United States, and mostly didn’t in the United States.
And the numbers, when we got into this, when we down to the Center for Disease Control in Atlanta, the numbers were so shocking, I couldn’t believe it. And they weren’t publicizing it. And they told us they weren’t publicizing it because they were nervous that pediatricians were uncomfortable dealing with the diagnosis of autism. And then they were uncomfortable dealing with the therapies that were available.
So I said, “That’s a reason not to tell people about this? I mean, that’s something you shouldn’t be doing now. You shouldn’t make those decisions. That should happen – you should be getting it out.”
It became obvious to us, when I saw that this is the most prevalent serious childhood developmental disorder in this country. And as far as I can – and it is in the developed countries. Now, in the undeveloped countries, there are other things like malaria, and other things like that, that, you know, have a huge – huge needs. But in a developed country, this is clearly going to be the most serious developmental disorder. Everywhere we go, everywhere that has taken an examination of this, even if they haven’t done the epidemiology work – which Dr. Kim is doing in Korea, for instance – even if they haven’t done that, it’s – the data that we have would indicate it’s going to fall under that category.
If you think about – asthma is 1 in 70, epilepsy is 1 percent, and – but epilepsy is perfectly treatable and diagnosable and treatable, and you won’t – you should not die of epilepsy. You should be able to live a long life. You should be able to be completely effective. And autism is about the same as epilepsy. And, in – 1 in 70 is asthma, and 1 in 100 is something, more or less, where autism is, so – and it’s a lifelong affliction.
And what we do know about autism is that it fully presents itself, from a symptom standpoint, by age three. You don’t get autism at 10, 15, 20, 31. It’s not like cancer in that respect. We also know that there are many autisms, so it is like cancer in the – it’s a spectrum disease. You can have people in dramatically different conditions and be autistic.
It is also not an easy condition to be diagnosed with autism. So you can’t run into a doctor and say, “My child has a developmental slowdown,” you know, “The child is autistic.” It doesn’t work that way at all. So, there is a relatively complete diagnostic pattern. We also found that that was not – that diagnostic pattern wasn’t available in most countries because it hadn’t been translated.
So, we concluded initially that awareness was the biggest issue we face, that no matter how many scientists we could hire and raise money for, if there was no real awareness in a country, or a given state, or a given city, or, especially with the medical organizations, then you’re not going to get any – you’re just not going to get anywhere. It’s going to be buried in the literature, and you’re not going to really get people out.
And I know, from my own background, unless you can really get people to come forward and to be activists in this, you’re not going to get politicians to take note. You’re not going to get large health organizations to take action. You’re not going to get foundations to put money in and to do the things. So that’s what we have tried to do, and we’ve really been quite effective at that in the United States. But we had some tools to deal with it here that aren’t necessarily available everywhere else. These PSAs through the Ad Council, which Suzanne alluded to, that gave us access to all kinds of media and all kinds of media support.
So, outside the United States there are different issues to deal with, and – but we have been very fortunate. And I think the irony is that – here it is – a Middle Eastern nation the size of New Jersey is really the proponent here. That is, you know, Qatar. And, you know, why they chose to do it, or how they chose to do it is almost irrelevant at this juncture, but they chose to raise their hand.
And last year Suzanne and I went from there to Israel, and we found – we thought we could put a partnership together with the Israelis and with the Qataris –MS. WRIGHT:
Well, we did, but Gaza came along.MR. WRIGHT:
And, actually, we did. And, lo and behold – I feel like the G-20 meeting, now here it is again, the same thing – MS. WRIGHT:
– just before this big exchange of doctors and scientists was going to take place – it was January –MS. WRIGHT:
– Gaza happened, and the whole thing got, you know, set back, you know, dramatically until that issue is resolved. So, politics do play a clear part. But, in the absence of politics, you are able to make a lot of progress. So we just have to work around the politics. And even the good politics, like the G-20, which is certainly not controversial in the sense of pitting countries against each other, have their – take their toll here, as they probably will tomorrow.
But the effort here – last year we got a number of countries to do things. This year it’s 40 countries and 6 continents. Suzanne was able to get first ladies to take part, and this year it will be substantially more. And also, not only first ladies from the standpoint of being the spouses of a country or the leader of a country, but also very significant world figures to take part in this, and so that is important.
No matter what the spousal working conditions are, unfortunately, with autism, the child always gravitates to the mother. So, no matter who was working in the family, the mother is the one that locks with this child. And it requires so much care that it can destroy marriages, because it can just take the love out of marriage because the child demands so much.
And the other thing that we do know, we do know it fully presents itself by three, but we also know that if a child is diagnosed by two-and-a-half, and is given a significant amount of traditional therapies – of speech, occupational and behavioral therapies, and that could be up to 40 hours a week – that that child has a 50 percent chance of being able to matriculate through a public school environment at or near age-level with significant help.
But if the child is diagnosed at age five or six – or, really, age six in the U.S. school system – if the child is diagnosed at that age, then there’s very little chance that that child is going to be able to matriculate. So the child is going to end up in a kind of what we call a special education class, or some satellite program outside of the regular classroom and outside of children that age, or the child may end up going back home to stay and live in the home, or the child could be institutionalized.
And so, there’s an enormous burden to the educational system if they are diagnosed in the educational system, because they’ve missed this early period where we can demonstrate – and it’s accepted – that substantial numbers of these children can be advanced enough – they will be not cured, but they can be advanced enough – to participate.
If they do not, then, effectively, they become wards of the state in one way or the other. And the cost of dealing with – in the United States the cost is estimated to be between $35 billion and $50 billion a year, dealing with autistic people in this country, and that’s a function of lost productivity, as much as anything. They’re not productive. They have to be produced to. They can’t contribute. They have to be fully supported in private homes, or semi-private, or institutional environment. So, there’s very good economic reasons to do all this besides the compassion and the assurance of – dealing with the child and the family. And a lot of our awareness is to try to make that visible to countries and health organizations.
Now – and health organizations, you know, often times don’t want to deal with anything new because it’s a cost. It’s a new budget item. And we understand that. It’s like when insurance companies don’t want to deal with things like this. But the – now the science comes into play. With a lot of awareness, it’s easier to get well-known scientists and educators to become involved. They think they have a place that their work is going to go somewhere, they’re not just going to talk to themselves when it’s over. So getting this out in the world is very, very important. And we haven’t seen anywhere where the numbers aren’t in that 1.5 percent range.
In Israel, ironically, they have a different way of going about it, and that’s probably – it’s probably the reason for this. But their view of it is it’s 10 to 1, boys versus girls. And there’s probably some social reasons as to why the girls aren’t stepping forward more than boys, but the reality is their numbers are 10 to 1. Their overall prevalence is less than I just described, but that’s a different percentage. But many other countries – four to one is generally what we see around.
So, these efforts here in autism tomorrow with the UN, the efforts of trying to get – one of the efforts we’re working on – those of us at this table will be speaking to a group with the World Health Organization. The World Health Organization has not embraced autism. I could be very critical of that, but I’m not. I’m just going to say they haven’t done it. And we’re going to be presenting a case for that tomorrow, and that is important. We are an NGO. We are recognized in the UN now. We have standing to do this sort of a thing. Our sponsor – or actually, they’re part of the irony of this whole thing – the sponsor, our sponsor in the UN, was actually the Arab League through Qatar. And I will tell you a story with some humor in it.
When we were going through this process, in order to become – in order to get this recognition and have this day, it required 100 percent agreement among countries. So I’m saying to myself, “What are the chances that that’s going to happen?” So we said, “All right, let’s go work on this, work on this.”
So, we go out there and Doha starts, we get a country here, we get a country there. Pretty soon we get 20 countries or something like that, and I’m getting nervous. And, all of a sudden, we get a call that the we – the Arab League just elected to take the lead in doing this. And, all of a sudden, we got 60 countries. It went from 20 to 60, you know, right off the bat. And the reason is because everybody asks the Arab League for things, but they don’t ever ask anybody else for anything. So this is, like, the first time they asked.
So we go to the UN last year, last December. And I’m getting off, but it’s so exciting. We get there, and we’re in the whole General Assembly. It’s the very last day of the General Assembly. And they have these petitions, as they do in the U.S. Congress, and they probably have in other parliaments and organizations, where they have uncontested bills. Some of them are very minor. Some of them can be – and they’re presented by the presenter, whoever, the sponsor, and it requires a 100 percent vote. And if anybody objects, it’s too late. That’s it. It’s like blackballing. And it’s up to you to get everybody to agree behind the scenes.
So we get there, and they’re going down the list – there is about 25 of these – and I’m sitting there, and I’m sitting there with the ambassador from Qatar. And, one after the other, people are objecting. “Gee, there’s another one down, another one down.” You know, and he got up there and they did it, and they put the gavel on it. It’s like, “Going once, twice, enacted.”
So, it was a very important day. And that gave us a lot of energy to continue, and to make sure that we would have a presence this year, get as many countries that’s involved, create events –MS. WRIGHT:
– in different parts of the world, and especially here in New York. MS. WRIGHT:
And (inaudible) will talk about that. MR. WRIGHT:
We will talk about the research and the other issues, because they all tie in together. All the research, the international research, is very critical.MODERATOR:
So I just – and kind of tying up with that whole section. So for tomorrow, for the Second Annual World Autism Awareness Day, (inaudible) that we have materials on autism for public awareness that have been translated into 10 languages, including: Arabic; Chinese, traditional and simplified; French; Greek; Hebrew; Hindi; Korean; Russian and Spanish.
And we have – there are events, literally, going on all over the world. There are fundraising walks from Aruba to the UK that are going on. There are concerts and fundraising events in Canada and the Netherlands and Nigeria. We also have Yoko Ono tomorrow, who’s going to be at the UN and unveiling a new art piece of hers that’s going to be auctioned off for autism awareness and autism science. So we’re excited about that. There are day-long seminars that are going on in Japan and Nigeria and Pakistan, and it’s been hard for us to keep up with everything that’s going on. It’s very exciting.
We also have – and I don’t know if we wanted to show these now, but there are a couple of other – just on the awareness front – a couple other of the first ladies who have made public service announcements for the day. And did we want to take a look at those now?MS. WRIGHT:
Now, this is just a sample of some of the first – I went to the women of the world. None of them said, “No.”
(Video was played.) MS. WRIGHT:
We just received another two from Albania and Mexico that will be joining us.MODERATOR:
And all of this is covered – we have a wonderful website, WorldAutismAwarenessDay.org, where all this information is contained.
So, this is the awareness piece. But, as we’ve alluded to, the science piece is so important for everything that we want to do: prevention; treatment; hopefully one day, ultimately a cure. Here to talk to us about that now is Autism Speaks chief science officer Gerry Dawson, and also our vice president for scientific affairs, Andy Shih. So, Gerry?MS. DAWSON:
Well, I’m going to read a few remarks. But, before I do that, I wanted just to take a moment and make sure that everyone really understands what autism is. We’ve kind of alluded to it, but I’ll give you a little bit more detail on that. It is a disorder that affects brain development. In most cases, we can see symptoms starting to emerge quite early in life, below age three.
What we see is difficulties in the area of social interaction, so the child may not be making eye contact or reading emotional cues, engaging in social games, developing friendships. And then, the second area is communication, and that includes not only spoken communication, the use of language, but also nonverbal communication, so the use of gestures and reading facial cues and body language. And then, finally, individuals with autism tend to have what we call a restricted range of interest. Sometimes it’s preoccupations or areas that they’re overly focused on, or sometimes this can be manifest in stereotype behaviors.
So, it’s really a constellation of symptoms, and also a spectrum disorder, with many individuals having cognitive impairment, but also at least 25 percent of individuals with autism have a normal intelligence. So, even in the area of cognitive ability, you know, we see this wide range.
So, what I wanted to do today is to just give you a few highlights about Autism Speaks’s research program. And to date, we have dedicated $131 million to research on autism. And we conduct research in five areas: the causes, the biology, diagnosis, treatment, and also the factors that promote dissemination of these research findings into the community.
And we’re still really in the early stages in understanding the causes of autism, but we do know that it involves both genetic and environmental factors. And we are discovering some of the genes that make an individual more susceptible to developing autism. But we’ve also recently launched a major effort at understanding the role of environment. And in fact, the most, I think, exciting area is to understand how genetic susceptibilities interact with environmental factors to then lead to vulnerability to autism.
Now, we’ve learned that autism is not one disease, but it’s many different diseases with many different causes. And so, piece by piece, we’re following each one of these leads to understand every one of those causes.
And we know, as I said before, that autism affects people in different ways. Some individuals will need constant supervision; they will never learn to talk. The estimate at this point is about 25 percent of individuals do not develop communicative speech. That’s changing, that percentage, over time. It used to be 50 percent, now it’s 25, and we imagine soon it’ll be more like 10. And that’s because of the availability of early intervention. But other individuals lead satisfying and very independent lives, and they’re able to use their talents and gifts in work settings, and really go on to lead very productive lives.
And what we’ve found, through research, is that early intervention has a profound influence on outcome. As Bob was alluding to, if we provide these interventions where we work one-on-one with children beginning at an early age, many of these children respond dramatically. So the average IQ gain, if you are participating in these interventions, is about one-and-a-half standard deviations, you know. So a child could be – and that would be about 20 points, or 25 points on an IQ. So a child could begin with mental retardation, and then, by the end of the intervention, actually be functioning at a normal level of cognitive ability. And then this has a huge impact on outcome.
We’ve also learned that we can recognize the symptoms of autism in infants, and this is a very active area of research. Autism Speaks is funding several clinical trials that are exploring interventions that can be used with young babies, and that can be delivered by parents, which is really important, especially as we move out into countries – even our own, in many cases – where we don’t have the resources to always provide expert therapists to come in. And when parents can do much of the intervention themselves, this makes it much more exportable.
It’s our hope that, by being able to recognize these symptoms in the first year of life, that we can eventually be able to intervene, either medically or behaviorally, before the whole syndrome is manifest, and that someday we may reduce the symptoms of autism in this way, or even, in some cases, prevent autism.
Now, we also know that many individuals with autism continue to suffer tremendously, even if they have received early intervention. So families face tremendous challenges financially and emotionally. Many individuals have associated medical conditions – so, for example: seizures, sleep problems, GI problems.
And, in fact, a study that came out last year showed that compared to other children that have special care – health care needs, that children with autism are more likely to have unmet health care needs. They have difficulty getting coordinated care. They have difficulty getting referrals from their physicians. They experience more financial hardship. They have to spend more time providing care themselves than parents do if they have other – children with other kinds of health conditions.
Currently, there’s no real well-defined standard of medical care. So, you know, if you have in the United States a stroke, or cancer, or cystic fibrosis, you can go to a center where you know that you’ll get a consistent type of care in the medical community. In autism we don’t have that yet, and that is a – so you can go to one place and get this kind of care, another place and get something different.
So, we’re very dedicated to developing treatments to address some of the medical conditions that children and adults with autism have. But, also, we’ve funded something called the Autism Treatment Network, which is 15 hospitals that are working together in the United States to develop standardized medical practice guidelines. And the idea behind having these standardized medical guidelines is to be able to use them, not only in the United States, but to be able to provide that information globally.
Now, at the same time that we are working on treatments that can address these symptoms that people have today and really improve quality of life, we’re also continuing to fund very basic research to – that can discover the causes and address the core symptoms of autism.
Currently, Autism Speaks is developing $10.9 million dollars to international research, and many of these studies are large, collaborative efforts that are bringing together the resources and expertise of many different countries. This year, for example, we committed $1 million to a 3-year study that will bring together data from large health registries from 6 different countries, so Australia, Denmark, Finland, Israel, Norway, Sweden. And these – this large registry of registries, so to speak, will be exploring both genetic and environmental risk factors for autism.
For the past several years, we’ve funded the Autism Genome Project. This is a $4.7 million collaboration among 120 scientists from 19 different countries. And they have created a common database of genetic information on families that have more than one child with autism. And already, this international collaboration has resulted in major discoveries, such as the Neurexin gene, which are allowing us then to get important information about the biology of autism, giving us hints about early diagnosis, and also leading to ideas about medical treatments.
We’re also funding an international consortium of clinical scientists who are studying infant siblings who have an older – well, an infant who has an older sibling with autism. So what we know is that if you have one child with autism in the family, that the risk of the second child having autism is much higher. It’s about one in 20, or even higher than that.
So, by following these infants who are at risk for autism prospectively, we’re able to watch how the symptoms emerge early, and then develop very early methods of early detection. But, since these are such special samples, it was recognized that, by bringing together these samples internationally, we would have much more power in understanding autism. So this international consortium is not only looking at new methods for early diagnosis, but also for early treatment.
Now, at the same time that we’ve been collaborating with many countries that have well-developed research infrastructure, we’re also helping other countries to develop their research structure, if they’re – infrastructure, if they’re in early stages. And a first step in doing this is the translation of reliable diagnostic tools. So, currently, we’re helping to translate the standardized diagnostic tools that exist for autism into Mandarin Chinese, Arabic, Hindi, Bengali, Marisi (ph), Konkani, Korean, and the Zulu language.
So, in all, these languages are spoken by an estimated 1.75 billion people worldwide. And we see this as a really important first step in conducting a worldwide epidemiology study that can help us understand the global impact of autism.
Currently, we have prevalence studies for autism in the United States, in the United Kingdom, in Scandinavia, Iceland, and Australia. But we’re also – Autism Speaks is funding prevalence studies in Bangladesh, in India, in South Korea, in Taiwan, and South Africa. And, in many of these countries, we’re also using these opportunities to study genetics or other kinds of special opportunities. So, for example, in South Africa, we’re funding a study that not only will look at prevalence, but is exploring the link between HIV infection and autism.
So as you’ve heard, autism does affect 67 million worldwide, but remember that that doesn’t reflect really the hundreds of millions of people in the families that are affected by autism. By combining all of our resources internationally, we can have a much bigger impact. And we’re – it’s wonderful to see you here today, and we really look forward to more international collaborations as we look forward to the future. So, thank you. MR. SHIH:
Thank you. It’s very – and Bob and Suzanne, and Mark alluded to – we fund autism research worldwide. We believe, by prioritizing our funding to deliver benefits to the individual families, we can further the relevance and the impact of science.
What we hear from families, and research by doctor Yung Shin Kim (ph) here, who is principal investigator of our – the first ever – permanent study in Korea, is that while research takes – like prevalence study can help define the scope of the public health problem in the foreign policy development, it is less likely to deliver immediate value to the situated families in need.
So, by complementing research-related activities, it increases professional and public awareness, it can help lessen stigma, encourage better care. Furthermore, by facilitating community-based training and service development, we can contribute to more immediate mitigation of suffering.
As a result, in 2008, Autism Speaks launched a global public health – the Global Autism Public Health Initiative, or GAPH. This is an ambitious international advocacy effort to provide support to other countries, to enhance public and professional awareness of autism, to develop clinical and scientific expertise and capacity, as far as international research collaboration, and enables service development and training in early detection and intervention.
The GAPH development process is informed by the latest in treatment research and the (inaudible) science. We can accelerate delivery of meaningful benefits to individuals and families in need by working collaboratively with all of the stakeholders. That would include health and education professionals, expert clinicians and scientists, and, of course, parents and families.
Today, GAPH-related efforts include the Shafallah Center partnership that you’ve heard about, where we’re working with the Shafallah Center for Children with Special Needs, to enhance autism awareness, and to pursue also genetic research and service delivery. In Latin America, we have the Pan-American Autism Awareness Training initiative. We’re working with partners like the Carso Health – Carso Health Institute of Mexico, the Canadian Institutes of Health Research, Sociedad Mexicana de Autismo, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the American Academy of Pediatrics, because both – the national initiative is a precursor to GAPH, and is helping to raise awareness and enhance research expertise and service delivery across North, South, and Central America.
Today, Autism Speaks is thrilled to announce the first GAPH partners worldwide with the participation of Albania and Ireland. As partnered in the GAPH Albania initiative, the Albania Children Foundation, under the leadership of Dr. Liri Berisha, the wife of the prime minister of Albania, and Autism Speaks have agreed to work together to develop sustainable, programmatic solutions that would ensure comprehensive and appropriate services for Albanian children with autism, and their families.
In Ireland, Autism Speaks announced an agreement with Irish Autism Action, an advocacy group, to form an advisory committee to fulfill the development of GAPH partnership. This committee will be comprised of representatives from IAA, Autism Speaks, members of autism – of the Irish autism stakeholder community and expert researchers from Ireland and abroad.
As Bob and Gerry and Mark and Suzanne have mentioned, autism knows no boundaries. And, as they have pointed out, our experience in the U.S. and around the world clearly shows that we can accomplish so much more by joining together in our effort across the globe. Autism Speaks, and the world is listening. Thank you. MODERATOR:
Thank you. That’s a lot of us talking, and I suspect you may have some questions, so we’re happy to open it up to any of your questions right now.QUESTION:
You asked where I came from, but you didn’t ask what I do.
I’m the president of the Foreign Press Association, which is a system organization to this – we have 350 members here. And I can tell you that a lot of this stuff will go up on our website –MS. DAWSON:
Thank you. QUESTION:
– and in our publication, and we’ll spread the message as much as we can.
Apart from professional interest, we have something in common. I have an autistic granddaughter, and so I know the disruption that it causes. And also, I was interested about how early you can recognize the symptoms, because I think that my daughter and her husband were in denial for quite a long time before they really accepted what this was. And what is the – when is the point where some kind of intervention might be really helpful? And I know you said there could be no cure, but at what stage is it beyond being able to help?MS. DAWSON:
In terms of age, is there a point at which you –QUESTION:
– close the door, so to speak?QUESTION:
Absolutely not. I really think that, at any age, at any time, you can have a huge impact, in terms of intervention. Of course we want to start early. You know, we want to have the child moving on to a more normal trajectory as soon as possible. But the notion that there is some point in development where a door is closed, it’s not only not supported by science, in terms of what we know about brain development, but it’s also not supported by the research.
In fact, you know, as we were starting to follow children longitudinally, you know, we’ve seen that, during the first five years, you can get dramatic changes in IQ with intervention. And now what we’re finding is that the changes that can occur during elementary and adolescence are just as great. Now, some children are developing language for the first time as – in their elementary school age and adolescence. So, I don’t want people to take away from the message, you know, when we talk about these early interventions, that, you know, it’s too late at some point.QUESTION:
Can I ask another one? You talk about environment. Are you talking about the domestic environment? Are you talking about a global environment? Is it more difficult in a city like New York? Are you less likely to get it in a rural situation? I mean, is there any distinction at all in the environmental basis for this?MS. DAWSON:
Right. Well, so, the best way to think about it is something like cancer or heart attack. We’re used to thinking about the idea that you would have genes that would make you more susceptible to a heart attacks, for example. So you might have things that are related to cholesterol, blood pressure, obesity.
But then we also know that diet, right, is going to make a difference, and that’s an environmental factor. Exercise is going to make a difference. So, in the same way with autism, what we think is that there are multiple susceptibility genes, and that these are interacting with multiple environmental factors. And, at this point, we’re casting a very wide net.
And so, for example, one of the studies that we’re funding is following 1,500 infants, who are at risk because they have an older sibling, from the point of conception. And we’re monitoring everything that the mother experiences during pregnancy: medication; diet; what was the, you know, the pregnancy and delivery length, and looking at – so examples of risk factors during that period would be we know that maternal infection raises risk during pregnancy. We also know that prematurity is a risk factor for autism. We’re looking at things like vitamin D, folic acid.
And then, after the birth, there are – we’re looking at things like pesticides or other, you know, kinds of environmental factors that would occur in the first few years of life. And, again, you know, there’s not going to be one thing, but rather, there may be multiple environmental factors that we may find raise the risk.MS. WRIGHT:
How old was your granddaughter when she was diagnosed?QUESTION:
She was three?QUESTION:
How old is she now?QUESTION:
She’s three and a half and she’s just –MS. WRIGHT:
So it’s relatively new for you now?QUESTION:
Yeah, but she’s on the brink of going to special preschool – MS. WRIGHT:
We were – visited with them.MR. WRIGHT:
We gave a speech there last October.MS. WRIGHT:
We gave a speech there last October.QUESTION:
Right, right.MS. WRIGHT:
When we went and met Mrs. – with Mrs. Brown.MR. WRIGHT:
This is one of the other contradictions of autism, with the – the parents that – the most well-off are the ones that are often slowest to – the ones that are more in denial.QUESTION:
And their reason is that they don’t want the child to be classified as “autism.” The longer you hold out treatment, the more likely that’s going to happen. And when they get to – when they get into the school, if they haven’t had any effective therapy, they’re likely to get classified. And it becomes harder to get out of that classification, in terms of age groups and whatever.
So it’s sort of all backwards in terms – and when we see – and some of the studies we’ve seen, in poorer areas where there’s a – where they may not have a lot of government or social services, they do have strong family connections. And those family connections, when they can get into something like autism, can be quite helpful. And they are actually more willing to gravitate to that solution – a family, with a family around a solution – than wait. So there is – there are a lot of things here that are just – MS. WRIGHT:
And we have to take the stigma away. I mean, it’s –QUESTION:
I mean, it’s fine now to be a child with AIDS. We all accept that. Well, it’s fine to have autism. It’s not a stigma. We have to take that stigma away.QUESTION:
Because it’s a global autism community that has to accept that they are autistic, that we accept them for their autism, and not, you know, in any way stigmatize them.QUESTION:
That’s why there’s denial because –MS. WRIGHT:
– if you don’t know, you might think it’s some kind of mental disease –MS. WRIGHT:
– or a mental illness –MS. WRIGHT:
– which it isn’t in that sense of it, really. And I don’t want this to be a private conversation (inaudible.).MS. WRIGHT:
No, no. We’ll have that later.
But could I just say one more thing? You cannot underestimate the damage to the family. You –MS. WRIGHT:
Oh, I know. I’ve seen it.QUESTION:
And I’ve seen it with my own family. My eight-year-old granddaughter, we learned this week, has a period of crying every day at school. And when the teacher asked her why, she said, “I’m crying for my sister.” So that’s just a small thing. QUESTION:
(Inaudible) compassion for (inaudible).MODERATOR:
Do you have a question?QUESTION:
Sure. Hi, my name is Shanta (ph). I work with a disability magazine, so we focus on disability issues. And I appreciate the information about your research and I had two questions, actually, on the advocacy work that Autism Speaks does.
One was exactly related to the point made about stigma, and I wondered what are some effective ways you’ve been able to address the stigma, particularly in developing countries, where I feel like the work that I’ve seen in HIV and disability there, because of the double stigmas attached, it’s been more difficult for people to actually recognize and accept and not deny autism. So I’m wondering if you’ve come across some effective strategies for addressing the stigma here and in developing countries.
And my second question was about self-advocates. Have you engaged self-advocates, people who have autism who are now part of the advocacy work that you’re doing, or even beyond that, and the work that Autism Speaks does?MR. WRIGHT:
Well, I’d say that the answer to the first one is – what I was trying to say before – once you explain to people that the earlier they can move into therapies, the more likely the child will be able to improve significantly. Once that gets through to people, the stigma issue breaks down a great deal, because that means if you’re hiding the child, the likelihood of help is very – is moving away from you. And if you’re active, it is moving towards you.
And it can be significant. You know, we’re talking about 20 IQ points, you know, between age, you know, birth and 5. That’s a – that takes a child into a classroom or keeps a child out of one. I mean, that’s a whole – that’s a huge deviation. So the issue really – the way we’ve been successful is we’re – people act in their own self interest at some point. If they think the child can really be helped, and they have to move now, they will do it. That’s where the awareness comes out. If they don’t understand that, they are likely to, you know, sort of hide the child, or hope they’re going to naturally get better. And that doesn’t work. MS. WRIGHT:
And I think a good example of that – and Andy, you might have some other countries because you deal with it much, much more than I do on that level – but certainly, Shafallah. I mean, for them to come to us and want an awareness campaign, and we partnered with them for the awareness campaign, was truly extraordinary. And to have those banners all over Doha about, “Look for the early signs of autism,” I would venture to say that possibly four years ago, they didn’t even say the word, “autism.” What other international groups that we –MR. SHIH:
I think, you know, what we said here is correct. I would think this – one of the keys is trying to find culturally appropriate ways to introduce the concept, and for the public to discuss, and for them to discuss this issue.
I’ll give you a very simple example. I was in Hong Kong a couple weeks ago, and I was surprised to learn that one of the main ways in which they help increase autism awareness is through Manga comic books. They have a series of Manga called “Traveling with Light.” It’s about a mother with a child being diagnosed with autism. Yet it sold 15 million copies in the Chinese-speaking world and it has done wonders in terms of enhancing public awareness.
And when we work with a country like Mexico, you know, we talk about perhaps the usage of soap operas to disseminate the information. So it’s all about trying to find the right medium, the right vehicle to share the information, to increase public awareness and appreciation of this disorder.MS. WRIGHT:
And I’d like to say, too, that when we were having the Presidential campaign, most of the candidates had autism on their health platforms. And, during the debates, if you remember, autism was mentioned several times. And we met with Barack Obama early on in his campaign, and he assured us that we would be hopefully getting an autism czar and hopefully, that’ll happen soon, and a billion dollars by the time his first Administration is ended, the first four years.
So, we’re very actively involved in Washington. I don’t know if you’re aware of – about several years ago, we got the Combating Autism bill passed, which is the $972 million. So they are listening in Washington. They weren’t listening, unfortunately, for many years. But when they see us coming, I kind of analogize it to the AARP. They didn’t have much clout for many years until they all got together. So with Bob’s great merger and acquisition of getting all of these groups together, we have a lot of clout now. When they see us coming, they know they need to listen.MR. WRIGHT:
The second part of your question is people do come forward with autism.MS. WRIGHT:
Yes, they do.MR. WRIGHT:
Young adults, older people in some cases, and they’re welcome – obviously, they’re welcome. There are people, though, that are generally older that are resentful of efforts to organize around autism.
And it’s difficult to explain, but they feel that their situation is not a bad situation, and they don’t like people talking about it in a negative way. But I would say that that, by definition – these are people that are really well off on the spectrum. And there are many that are in that case, but there are many more that aren’t. So, you know, if we would listen to them, we wouldn’t do anything. And they would be at the top of the pyramid in autism, but the pyramid below would be very big.
So, you know, we try to reach – we look at the entire range of people with autism. And, as Gerry said, a substantial number of those people are really handicapped – mentally handicapped, not necessarily physically handicapped. And they can improve, or at least they have a high likelihood, if they’re given a lot of therapy. And the more awareness we get in, the better we get. We get more doctors, we get more facilities.
One other comment I’d make that is helpful to us is the – one of the reasons why Qatar is where they are is they built this very elaborate facility called the Shafallah Center. And it was dedicated to children with disabilities – Down’s Syndrome, other disabilities – and they relied heavily on outside advisors for this design of this, and so forth.
And Sheikha Mozah told us that she was just stunned when they opened. Over 50 percent of the children that came there had autism. And their advisors had not suggested that would be the case at all, that it would be something like five percent. So they weren’t staffed correctly, and they weren’t – they didn’t have the right resources. They didn’t have the right planning. And I think that was very annoying to them, that they had gone to this much trouble and that they were – so they were sort of angry, “How could this be? Why don’t we know this, why don’t these advisors know this, why don’t these doctors and scientists know this? What did they tell us?”
So, they started looking around and, you know, and they realized that, in their own population, people were actually showing up with autism without being forced to go there, and the numbers were quite significant, as they are everywhere.
So we’ve seen that in the United States now, and many, many of the strongest supporters – the Marcus Institute, which is down in Atlanta, had the same experience. It’s a very well-funded organization. And 60 percent of the children that come there, this – the children with disabilities have autism. Twenty years ago, when that opened, it was only like, five or six percent.
So, care is helping us too, as a friend of this issue. And hospitals in the United States are raising their hands very quietly, the staffs are, saying, “We’re turning away autistic children because they don’t have insurance. In this country, insurance doesn’t cover autism. And we can’t keep doing this. We’re turning them away, we’re not giving them help, we’re not admitting them to the hospitals, we’re rejecting them because they don’t have proper insurance.” And they do have insurance, but it’s – so we’ve done things to get insurance passed and we’re doing that at the federal level.
So, there are a lot of things happening now where constituencies are recognizing that this prevalence is impacting their professional abilities, and they have to get out that message.QUESTION:
Thank you. MS. WRIGHT:
I just want to introduce Peter Bell, who works with Autism Speaks, and he’s a parent of a 15-year – 16-year-old child with autism named Tyler.MR. BELL:
I would just – real quickly, because they’re not going to take credit for this – but your first question was, how do you reduce the stigma? Those two people right there have probably made the most profound effect on this community, not only here in the United States, but also around the world. As Suzie said, I have a 16-year-old son and for the first 10 years of his life, you know, autism really was not something that people talked about.
And when Bob and Suzanne came forward and talked about having a grandson with autism, it gave millions of people around the world permission to talk about their child. So, they’ll never admit it, but what they’ve done – not only just by doing what they’ve done, but Suzanne being relentless with the UN and first ladies around the world, and so forth – MS. WRIGHT:
Thanks, Peter.MR. BELL:
– you’re looking at it, right there.MS. WRIGHT:
But I really give my daughter a lot of credit. And I’m getting teary-eyed now, because when this happened to us, you can imagine how devastating it was in our family. And we could take care of Christian, and she knew that – my daughter – that we could take care of him, and we wouldn’t need any more help. We could just go.
But she and my son-in-law found it so terrible that this was happening on such a scale that we – they said, “Mom and Dad, it’s okay, we’re going to talk about it, because now we’re – because we’re so public, God willing, if Christian does come out of the darkness of autism that he’s in now – because he’s nonverbal – he will always be autistic. That label will stay with him.” And I – and she said, “So what? So what? It’s much more important that we form a global community and help not only this generation, but the generations to come that will be born with autism.”MR. WRIGHT:
There’s also no blame here. MS. WRIGHT:
One of the things we – I say this to people – we – if somebody were to come to us and say – a mother were to come to us and say, you know, “What can I do to avoid getting autism,” the answer is, “We don’t know.” And I turn it around the same way. If you wanted to get autism, we couldn’t tell you what to do to get it. It’s very much like cancer in that regard. The vast majority of cancers, we have no idea where they come from, and we have no idea how to prevent them, and there’s no blame.
Now, we talk about smoking and we talk about sun, but this is a very small segment of cancers, and even there it’s not clear. But, you know, you can’t tell somebody how to get cancer. If you want to go, “I want to go out and get cancer,” you can’t really do that. And you can’t really tell somebody exactly what you do to avoid it, because it just doesn’t work that way. Well, that is autism. So it isn’t – there is nothing we can tell a mother that she should do or not do, that we can say would either prevent autism or cause it. MS. WRIGHT:
We can say to the young mothers, “Watch the milestones.” That’s really important, and that’s all over our website. And I think that young mothers today, that’s the real key thing, that they have to be advocates for their children. They have to make sure that if that language is slipping – which was in Christian’s case, Christian has a really great vocabulary – and many doctors in this country told us that, “Don’t worry, because another baby was born, boys regress.”
Well, in the day of the Autism epidemic, that’s not allowed. If you have slippage of language, or tantrums, or biting, or walking on your toes, or slapping, you know, there’s all kinds of signs. And, you know, better be wrong than not, than continue to go on and be in denial, because you – the – Katie will never forgive herself because she lost nine months in denial.
So, okay, anymore questions? Yes. QUESTION:
Yes. I wonder how the number 76 million comes up? MS. WRIGHT:
Sixty-six – yes.MS. WRIGHT:
One percent of the world population.MS. WRIGHT:
One percent of the world population. QUESTION:
One percent of the world population. And is this more prevalent in developing world or developed countries? MR. WRIGHT:
We don’t know. QUESTION:
You don’t know? MS. WRIGHT:
Do you know that?MS. DAWSON:
No, we don’t have that info. QUESTION:
And another question is about a research project by participating countries. Is it the medical institution or civil groups or the government? FEMALE:
You know, it differs depending on the country. So, depending on how the scientists are being funded. So sometimes with the health registries, we’re really, you know, supported by the government. In other cases, we’re working with universities. And so it’s very individual.MR. SHIH:
And you’re from Taiwan, right? QUESTION:
Yes. MR. SHIH:
So I can tell you that part of the study that’s being conducted in Taiwan right now, they’re actually in the field this month, and we should have some data by the end of this year. That is an effort, a collaborative effort by a researcher from Johns Hopkins University, and cultural and medical center, (inaudible) county magistrate’s office. So it’s truly – as we’ve been emphasizing, it’s a collaboration of the government, the scientists and the parent community that enable these things. QUESTION:
Yes. MR. SHIH:
I have a question. And if it’s – could you elaborate a little bit on exactly this thing about combining your registries in different countries? What are you hoping to gain from this, and how do you do it? And maybe you already (inaudible) – MS. DAWSON:
Do you want to do it, or do you want me to?
Well, so, you know, in other countries we just have – they just have – much better systems for monitoring, on a broader scale, the heath experiences of children. And so, what we’re trying to do is to take advantage of the countries that do have these broad health registries, to look at things like what happened during the prenatal period. What was the birth and delivery like? In some cases, there’s DNA available.
So, it’s just to create a very large database to look at the combination of both, you know, specific genetic mutations, in some cases, as well as particularly things during the prenatal period and during the birth So, prematurity would be something that, clearly, we would be looking at. QUESTION:
So it’s going back to the balance between the environment and the – MS. DAWSON:
Yes, absolutely, and trying to look at how they interact. QUESTION:
So it may be that prematurity is going to be a risk factor only in children who have certain genetic susceptibilities, for example.
And the thing about putting – trying to understand these different causes – and similar with genetics, because there’s multiple genes – that’s why you need the large databases. You know, if it were one gene, you would not need that many people to – and we would have figured it out by – right. But it’s many genes, each one of them having some type – you know, only a small effect on a small proportion of individuals. So these large datasets are very important. And that’s why the international collaborations are so key, because people are doing these studies around the world. And if – and then we bring the datasets together. And the Autism Genome Project is a wonderful example of that, right, and we’ve already seen the results of putting together that large dataset and discovering genes that had not been discovered before. And now, this year, we expect more findings to come out. PARTICIPANT:
Maybe Dr. Kim could just describe for a second what she’s – how she’s –MR. DAWSON:
What she’s hiding.MR. WRIGHT:
She won’t do that, but she can describe to you – describe what (inaudible) have been doing, in terms of the – in Korea, and what she’s gathering, and where that data comes from, and so forth.DR. KIM:
Probably the Korean study, the first study funded by Autism Speaks in Asia area, right? So those that was 2005. And, you know, I can cover a little bit about the stigma in Korea too, because it all tied up with everything. And so when we studied about this study, what happened in Korea is Korea is well advanced, in terms of (inaudible) country. But, for some reason, Autism Spectrum Disorder was not on the edge.
So, what’s happening is, at the time – first of all, autism was regarded as a, like, a death sentence. So once you get the diagnosis, your child is never going to be making anything, and dependent upon you, and institutionalized. So – and then, they would rather not have that diagnosis, because that’s death sentence. And, with some of the tradition in Korea focusing on parents, parenting issues, so a lot of – some of the doctors came up with this reactive attachment disorder. And there was an epidemic of reactive attachment disorder in Korea.
So, all of these kids who have these developmental delays or problems, and having difficulties with social interaction, all the mothers began to be blamed that, “It’s because you didn’t raise your child right, and that’s why you are having a child problem.” So you can imagine how it affects on the family in front of all the family members, you are blamed to have your child be developmentally delayed and a deviant. So that was a huge problem.
But then, rather, parents were willing to take that blame because that means, “If I change myself and raise children better, then the children are going to get better,” whereas, you get the diagnosis of autism, then it’s – there’s nothing. So, in terms of stigma, then you have to teach the public what is available that actually ought – there’s no cure for autism at this point, but we can make huge difference. There is an intervention that works – make a huge difference. So they’ve got to know about that kind of thing.
And also, when we talk about the causes, especially genetic causes that Bob mentioned about finger-pointing and blaming, and then it becomes blaming issues that, okay, the people have a very rudimentary understanding about the genetics, then, “Oh, okay, so genetics. So you have a problem in our genes. It’s whose problem? Is that your family? Is it my family?” And then it becomes a whole problem, finger-pointing.
But the genetics of – complexities, it’s not that simple. It’s not like one disease – one gene, like Gerry mentioned. It’s not coming from one family. It’s multiple genes combined, you know, very random fashion, and also with the environmental factors. Because there are some (inaudible). So there’s 100 percent identical genes, but some have autism and very small (inaudible) too. There’s a disparity of the diagnosis. It’s not all gene.
So you have to understand that genetics doesn’t mean that it’s your family’s problem or your problem. So all those – accurate information has to be conveyed. MS. WRIGHT:
How prevalent is it in North Korea – I mean, South Korea? DR. KIM:
South Korea. We don’t know, we don’t have the answer yet. But we don’t expect that it’s going to be any lower than we see in the Western culture. MS. WRIGHT:
And the Korean studies, with the help from Autism Speaks – so that was the status. And no one was really interested in Autism Spectrum Disorder, because it’s somebody else’s problem, so we jumped in with Autism Speaks, because there was no way for us to get any money from Korea to do this study. And then we went and entered a community. We decided to screen all the children, because we couldn’t accept any diagnosis from psychiatrists or some other hospitals, so we decided we’re going to do it by ourselves and that’s spread some wars out there.
So, we went into one city, which is just next to Seoul, the capital. It is a very residential community. And we screened all of the children in the school system – regular school, special-ed school, disability registry, with parents and teachers who put a lot of work. Some of the schools, when we visited, they didn’t even want to talk to us, and they just closed the door and we came back and we knocked on the door again. So persistence and insistence is a really important factor.
And then, that started about 2005. And so, right now, 2009, we are almost at the end of the stage, so we will be making the final diagnosis based on all – so when the kids are screened positive with lots of other questionnaires, we brought them in for the – like, about 6 or 8-hour diagnostic procedures. And then we make diagnosis. So that’s what we’re doing right now. And, because we look at the children, even at the regular school, we’ve – even at the regular school who were not identified with any problems before, but have some problems, like with peers and that kind of thing, we begin to find a lot of kids with Autism Spectrum Disorder.
These other kids fully (inaudible) and have, you know, high functioning, meaning above normal or normal range children, but they were having a lot of problems with peers. They couldn’t figure out what was the problem. Maybe the kid was selfish or just couldn’t take turns and that kind of thing. But when we did the whole evaluation, some of those kids were having trouble in the social interaction, and then they were referred to some of the social skill training programs.
What happened is, a year later, the kid who didn’t want to go to school, having horrible problems at school, a year later, he became vice president of the class. Well, he’s not the most popular child. He’s still having some problems, but he could make that much progress. He loves going to school, and makes some friends that he can talk and spend some time. So there are those kind of stories that we can share with you.
And then, now we are – we were able to have, like, annual meetings, seminar, to talk about the Autism Speaks awards and Autism Spectrum Disorder. And so this is not top-down, but it’s more like a bottom-up, that we are starting, you know, from the scratch.
And then, this study actually created pretty positive impression in the community. And many the community picked it up and then studied (inaudible) like mass screening program for the six-year-old children who comes into the school system, not only for Autism Spectrum Disorder, but all sorts of developmental psychopathology, and provide some treatment for them. So that’s the story. MS. WRIGHT:
Well, that’s great. Anybody have any other questions? PARTICIPANT:
We have time for one more question. And before we take that, I just want to encourage everyone to please go to the Autism Speaks website. We have a Facebook page and we’ll be Twittering, beginning today. And I encourage you, and there are a lot of stories. There are a lot of videos. There are a lot of – there’s a lot of information to be shared, not just today, but as we move forward. So it’s the best way to really engage the whole global element of the activities that we’re doing. QUESTION:
And the world (inaudible) website (inaudible)? MODERATOR:
Any – is there – the last question, please. QUESTION:
I have two questions. One is what do you think is the validity of the theory that autism could be caused by infection, by bacteria? And the second one, in this country, your group, is your group promoting some kind of social networking for the people with autism, to help them to ease the stigma of that? MS. DAWSON:
So, with respect to bacteria, I mean, there’s no, you know, specific bacteria that comes to mind. But remember that autism can have many different causes. So, theoretically, one could get a bacterial encephalitis and then develop autism symptoms secondary to that. That would be an unusual cause, you know, that doesn’t – that’s not a common cause. Did you have a certain one in mind or? QUESTION:
I have a an example of my friend’s – MS. DAWSON:
Okay. Yes. Usually that is not the typical cause of autism. You know, but again, thinking of it as a brain disorder, and anything that could theoretically affect the brain and brain development – so we know, for example, you know, viral infections, right, can have an impact. Maternal rubella, right, is an example of a viral infection that has – is a – you know, results in autism or can result in autism. So it’s certainly theoretically possible. It’s not the most common ideology.
With respect to social networking – I might turn this over to Peter – what we are currently moving – or rolling out a large program focused on adults in Autism Speaks. And a very important aspect of supporting adults with autism is social networking, and them providing, you know, support for each other and being able to establish communication. And sometimes over the Internet is one of the very best ways to do that.
And so it is, you know, a component of, really, a large array of services and different approaches to helping adults to be successful in their lives. I don’t know if – Peter, if you have anything more to add on that. MR. BELL:
No. I mean, it was actually very well handled. We are starting to focus on the entire life span. And the face of autism is changing. That is no longer something that happens just to very young children. In most cases, because people will live with autism throughout most of their lives, we need to reflect the fact that there are adolescents and eventually adults. And there is this wave, certainly here, at least in the United States, of people that – a significant increase in the number of diagnosis that started happening in the 1990s. And so, it’s sometimes referred to as a tsunami of people who are going to be aging up and becoming adults over the next 5 to 10 years.
I think we’re also becoming much more aware of the cognitive abilities, as also – as well as the nonverbal communication abilities. So, computer or assisted devices have become much more common place. I think that, you know, many years ago, there was this notion that facilitated communication and that people – it was not considered a viable form of communication. But there certainly are other devices and ways for people to communicate, not just necessarily through verbal communication. And I think social networking, this would be a great opportunity for our kids who are eventually become adults, and those people who have autism and are adults today, for them to network with each other.
And the last point I’ll just say that we have to, as a society, figure out ways to integrate people with autism into our communities. They can’t be shut out or put off into a developmental center, or what have you. They need to be our neighbors. They need to be people that we’d interact with and see on the bus and see in our religious places, and so forth. And we have to continue to change that stigma. We’ve made some inroads, certainly, but we have a long way to go. MR. WRIGHT:
Israel has actually done a good job of that – impressive, very impressive. MS. WRIGHT:
Very impressive. PARTICIPANT:
Let me just add a little to it by (inaudible) and a quick story. Let me direct you to two wonderful websites particularly set up for tomorrow, that – WorldAutismAwarenessDay.org is a wonderful resource. And then, ongoing is AutismSpeaks.org.
And we’ve talked today about awareness and stigma and intervention. So let me – let us end on hope. And it’s an interesting story you tell, and I’ll connect back to something Peter said before of, really, the ground that’s been covered in the four years that Bob and Suzanne have brought this Autism Speaks to the United States, and now the world, but particularly here in the United States, and the awareness.
I have the honor of traveling around this country and I meet with hundreds of thousands of families across the country. And about a month ago, I met a mom of a son – who had a son two years, nine months. And she was being told at 18 months by her doctors, “There are some tendencies here. Your child may be with autism.” And it sounds, like many moms, she went into a depression and she was (inaudible) and didn’t understand what this was, and was overwhelmed, and did not want to talk to anybody.
And, because of the awareness that’s here in the United States and seeing these public service announcements, she went to the Autism Speaks website, and there was something there called the First Hundred Days Kit. And it just explained very clearly what autism is, what autism isn’t, how it wasn’t her fault, how these were some developmental signs, and what might be able to be done. And then in back of this kit, it also contained where she could reach out locally to get help with her son.
And that’s where I met her, was at a program, and she was there with her son, two years, nine months, and she was so proud because she turned to me with tears running down her face, saying, “You know, he’s been in this program now for since about 20 months. And they’re talking to me about now, if he’s going to lose his designation that he is with autism,” because he’s gained those 20 points that we talked about. And that’s what ultimately, this all is about. So thank you all for today. MS. WRIGHT:
Thank you so much.
(Applause.) MS. WRIGHT:
The mayor has declared tomorrow – we just got our proclamation – World Autism Awareness Day here in New York. So I’m very happy.MODERATOR:
Hold that, we’ve got a picture.MS. WRIGHT:
Oh, okay, we’ve got a picture.
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