Trump and autism: People affected speak out

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1:17Hello, I'm Rahul Tandon. Welcome to the documentary from the BBC World Service. In BBC OS Conversations, we bring people together to share their experiences. This time, we hear from people with autism. The meteoric rise in autism is among the most alarming public health developments in history. There's never been anything like this. Donald Trump speaking from the White House, pledging to confront what he called the horrible crisis of autism, in which he said cases had jumped from 1 in 10 ,000 children to 1 in 31 in the space of around 18 years. He claimed these figures show that something is causing the condition.

2:02Previously, the president has suggested a link between some vaccines and autism. And in this announcement, he pointed the finger at a commonly used painkiller, paracetamol, as it's known here in the UK, or Tylenol. Fight like hell not to take it. There may be a point where you have to and that you'll, you have to work out with yourself. So don't take Tylenol. His comments have been widely disputed by scientists and researchers around the world who study the condition. They say the rise in reported cases of autism is due to increased understanding and diagnosis, but does not reflect any change in its prevalence.

2:44They also reject the suggestion that autism is caused by painkillers or vaccines. In our conversations, we'll hear from autistic people and parents of autistic children. as they react to what's being said by the politicians.

3:04Sue Nelson is an award-winning science journalist and broadcaster here at the BBC. She was diagnosed with autism at the age of 60. Elena Carroll lives in Canada and was diagnosed at 25. And Ella Willis is from Newcastle in the UK and was diagnosed in their early 20s. I began by asking them all what they thought when they heard Donald Trump's comments.

3:52globally. Elena? Yeah, it is completely heartbreaking. I don't just hear the deranged misinformation. I hear the harm that it's causing. I hear the blame that it's putting on mothers. I hear the fear that it's spreading to families. And I see how it's pushing us backwards in the work that so many of us are doing to build understanding and support for autistic people. Sue, we use the term autism, don't we? And it's one of those words that we use a lot. And yet many of us don't really understand. Well, I think that's one of the issues here. I mean, as a science journalist, I object to the fact that certain pronouncements are made when the evidence doesn't support that statement.

4:39But as an individual, and as somebody who didn't know she was autistic until very recently, It's a lifelong condition. So even if you're not diagnosed, you still have autism. And my objections are more to do with the fact that it sounds like I've got a disease, that I need a cure. And for people who've got autism, they will be able to tell you that it's something deep within you. It's like if you're gay, do you need to be cured for being gay if you've got autism? It's a different way of processing information. It's about social development. It's about understanding people or very often misunderstanding people because a lot of autistic people take things literally.

5:24But, you know, there are a range of diagnostic criteria that goes into somebody being autistic, but it's not something that can be cured. I mean, maybe some of the issues associated with autism can be helped or relieved, like anxiety. But the condition itself, as far as science knows, can't be cured. It shouldn't be treated as if there's something wrong with us. It's just a different way of thinking and it's how we are. Elena, when the president stood up and talked about preventing autism, an epidemic of autism, Do you think that makes your life a lot more difficult? Because when we talk about a cure for something, it means it's a problem, doesn't it?

6:06Completely. I think that the comment about autism being an epidemic, it's not. It's always existed. What has changed is our awareness, our understanding, and our ability to diagnose it and recognise it. And what we're learning is that autism is a spectrum. that has been half of my battles is not presenting as the stereotypical autism way. And so the broader our understanding becomes, the more people are finally getting the recognition and support they need. So I think now the discussion around autism is transitioning as something that needs to be prevented or cured, which is complete ableism. And it's shifting the conversation away from what really matters, which is accommodations, support and acceptance.

6:56And it's placing the blame on parents, especially mothers. Yeah, and it's scary because it ends up framing autism as the thing that should be feared. And especially when we're talking about vaccinations, they're there to prevent people from becoming sick from things that can actually be deadly. Whereas people start to think that autism is the thing that they want to avoid. It changes the world in the way that people view autism when we have these conversations. and misinformation is spread because autism is then not viewed as a disability that should be cared for. It's something that is seen as something that's shamed and then people don't have their needs met, especially for higher support needs autistic people.

7:35That can be incredibly dangerous. It makes me worry for the way that autistic people are going to be trekked from now on, now that we're seeing it be spread online on so many major platforms from a man that shouldn't be trusted. And that word, Elena, fear that Ella used there, do you sometimes worry about how people are going to react to you? I think that there's always been that fear. I mean, that's part of the reason why I was probably masking my entire life even before I knew what was going on before the diagnosis came. I didn't know how people were going to react to the real me and so once I've had this diagnosis there's now this other layer of fear now with politics now autism is being framed as something that is preventable and now it's fueling discrimination suddenly being autistic looks like a choice someone made and it does often land on on the mothers which is definitely not the way that this conversation needs to go no it certainly isn't too.

8:40I have friends who have children on the spectrum of autism. I remember in the past somebody saying, oh, it's to do with what you eat. And there was a whole period where a friend of mine went off to the States thinking, oh, they could cure autism in that way. It's not the first time we've had things like the president said about paracetamol. It's been there before, hasn't it? Yes, it has. And actually, there's quite a lot of concern about some of the so-called cures that are already operating for autistic people, especially in the United States, some of which actually involve physical harm. But I think what Elena said about accommodation is really important and actually is something that can be easily done.

9:21And there are companies around the world that do do this already. They make some of their workplace spaces autism-friendly. And interestingly, some of the things that they do to accommodate autistic people non-autistic people really enjoy as well, which is like having textiles and textures that are more varied. I, for instance, love stroking furry things, anything really soft. Exactly, who wouldn't? And also they will have like separate workspaces where autistic people who get overwhelmed by certain sounds or lighting. So there are all sorts of accommodations that can be made that would make autistic and particularly autistic children and maybe those who don't even know they're autistic yet but understand that they've got huge sensitivities that may not make sense it would make their lives better as well as other people's that's sort of where this should go sue nelson alana carroll and ella willis sharing their experiences of autism and their reaction to donald trump's claims about the condition

10:37I'm Rahul Tandon and this is the documentary from the BBC World Service.

10:47Hi, this is Oliver Conway from the Global News Podcast. Big news from Washington. The US Supreme Court has ruled that President Trump exceeded his authority when he imposed sweeping tariffs on America's trading partners, The 6-3 ruling is a major blow against his economic policy. We have the details. Search for Global News Podcast wherever you get your BBC podcasts.

11:15If there was a big red button that would just demolish the internet, I would smash that button with my forehead. From the BBC, this is The Interface, the show that explores how tech is rewiring your week and your world. This isn't about quarterly earnings or about tech reviews. It's about what technology is actually doing to your work, your politics, your everyday life, and all the bizarre ways people are using the internet. Listen on bbc.com or wherever you get your podcasts. The characteristics of autism vary from person to person and can overlap with other conditions, sometimes including learning difficulties.

11:59There's no blood test or brain scan to detect autism. So diagnosis always has to be made by a trained specialist. Many scientists believe there's a strong genetic component and there may be other environmental factors involved in someone being born with autism. But a study last year looked at data from two and a half million babies born in Sweden and found no evidence to support President Trump's recent claim that there's a link between autism and the use of the painkiller paracetamol or Tylenol in pregnancy. So what are parents of autistic children to make of all of this? Kieran Rose lives in the UK and has three autistic children with his wife Michelle.

12:44He works as an autism advocate. Gifty Ayoka is in Ghana. Her son was three when he was diagnosed with autism. She's since trained as a speech and language therapist to support him and other autistic children across Ghana. And Areva Martin is in the US. Her son Marty was diagnosed with autism at the age of two. She's a civil rights lawyer who defends parents of autistic children from discrimination. When I heard Donald Trump make those comments, I had a range of emotion from shock, dismay, anger and frustration. And those feelings are grounded in what has become a pattern from this administration, which is not relying on credible scientific and evidence-based information and noted and renowned scientists, but rather disseminating fringe information, a lot of which could be labeled junk science.

13:45and having been an autism advocate for over two decades, I know that someone with his power, that it would create a lot of confusion, a lot of fear, a lot of concern, a lot of anger, a lot of guilt, and that people would hang on every word and they would start to share that information and they would believe it even in light of the credible evidence that directly contradicts it. I can't agree with that more. Coming from my position as a parent, as an autistic person, and as also someone who's an autism researcher as well, the way that it was done and the things that he said always come as a shock and a surprise, but the narrative was not a surprise.

14:26We've consistently had this kind of narrative of fear and it feeds this kind of ecology of stigma that we have around autism. And while I think Reva's right around the kind of junk research and the fringe research, there is also a huge amount of research which does consistently drive towards this idea of there being a cause. And this consistent cause-seeking is one of the biggest parts of the problems that we have. For me, in Ghana, you know, in this part of the world, people associate autism with witchcraft and all sorts of things, you know. And so as a parent and a parent advocate, you're already out there trying to tell people that this is not the cause of autism.

15:05And these are the possible causes, you know, as scientific evidence suggests and all that. Then you have to deal with this other, would I say, new information. And this is the president of the United States of America. So they will take his word more than yours because, of course, he holds a bigger stage than you. He holds more power. So it brings a lot of confusion in the space, you know. Tell me what it was like, the conversations you had over the next few days after President Trump made those comments. Did people come up to you and start talking to you about it? Oh, yes. You know, apart from being a parent of, you know, a child with autism, I also am a speech and language therapist, so I worked so hard.

15:48And so one of the first things that came up in our parents group was, oh, no, I never took Tylenol. I remember clearly I never took. And then you have others also saying, oh, I took it. Could it be? And then now you have to now tell them that, you know, there's no scientific evidence to it. We've done a lot of advocacy around autism, trying to educate parents on what it is and what it's not. And so to have this new set of information just, you know, coming like that, it sort of disrupted everything that we've worked so hard to achieve. And there's anxiety, the fear, you know, what's next for us?

16:25Where do we go? You know, shall we travel to the U.S. and get some help? because it looks like they have more information and there will be some form of help. You know, it's a lot of confusion. It's overwhelming. Kieran, you used the phrase, ecology of stigma. Can I talk about your children? Tell me how old they are. They are 16, coming up 15 and coming up 13. Have they had different experiences since President Trump made his comments? And have you sat and had a conversation with them? And if so, what have you said to them? Yeah, we have had conversations about it. They understand that they're autistic.

17:02We are an autistic family. So we're very kind of up on the politics. And obviously what I do is often a dinnertime kind of conversation for everybody. Were they scared? You know, you talk already about stigmatization and it's difficult. Did they worry that it was going to suddenly be even worse? Yes, I think that's fair to say. They, like me, were not surprised because we are surrounded by this rhetoric a lot. For it to come from such a powerful place, as Gifty said, is obviously fresher and different and bigger. but they are constantly fearful about how people are going to perceive them and how people do perceive them all three of them have had problematic relationships with the education system which again i think is a big part of this narrative of how autistic people are perceived and stigmatized and reduced down to this idea that we are disordered and dysfunctional and broken versions of human beings and then someone like trump comes out and basically says that on the There has been very little pushback from politicians here in the UK and in other countries as well.

18:05You know, I monitor this. There has been an outcry and there's been a lot of media talk about it and push back against it. But politically, there has not. And that's obviously tied into other things. I'm aware of that. But I worry about my children. I just want to bring Areva into this conversation because Marty, your son, was diagnosed at 2. He's now much older than that. He's 25. What have his experiences been like? What has it been like for both of you? As Karen has said, the stigma that families face, that individuals on the spectrum face, that's real in places that you think should be safe.

18:38They may have behaviors that people find unattractive, find offensive, find annoying, and it can cause them to act on that, whether it's a nasty stare or an offensive comment, or even a request to management to have you removed from a hotel lobby, from a restaurant, from a movie theater. Families with autism face a great deal of discrimination and they are often ostracized from these environments. Yeah, I can definitely relate to what Ariva is saying, the stigma in raising a child with autism, especially in this part of the world, where I would say that we were sort of late to catch up on autism.

19:19You get a lot of stigmatization, school, church, public spaces, the hospital, you know. It's as if you didn't, you know, raise your son well. You go to schools and they tell you they can't accommodate your son. And it's like a cycle. You go here, you hit a dead and you go to another place and it's the same thing, you know. Every day you try to navigate through these challenges, you know. And to now add Tylenol, it places more blame on the mother. And already we've had in the past the cold mother syndrome where, you know, mothers were blamed for autism. I think that this is going to bring back this kind of blame.

19:59And as a mother in this part of the world, Africa, we already have men who don't understand these things. I mean, it adds more value to their conspiracy theories. The mother ate something, the mother did something and all that. Now, and it's like, oh, you see, we always knew that it was coming from the mother. I do. I lived in India for a long time where there were very similar sentiments. Ariva, Marty's 25 now. How is life for him today? His life is very good. It's because he has a very loving family. He has sisters, two sisters that love and adore him, that support him. And because he's been fortunate, because I'm a civil rights attorney, my husband is a litigator.

20:42We own our own law firm. We are well resourced. But the reality is so many kids, particularly black kids like Marty, brown kids, kids of color in the U.S., don't have the advantages and benefits that he has had. He had early intervention. He had early diagnosis. So many black and brown kids don't have access to high quality health care, don't have access to qualified medical providers who can provide early diagnosis. We know that black women, in particular in the US, oftentimes are ignored by medical professionals. And the wait time for a diagnosis can be as much as two to four years. And then the access to those very, very costly gold star intervention treatments are often lacking in black and brown communities.

21:29Gifty, you're in Ghana and we heard there from Areva in the world's largest economy struggling for resources. What is the situation like in Ghana? I think that we have a similar situation in Ghana where we don't have enough speech and language therapists. We have 16 regions and I think from now we have only four regions that have access to a speech therapist. We don't have any form of financial support or let me say there's no insurance cover for therapists. There's no support from government. Is there much discussion about it? There is. Compared to 10 years ago when my son was diagnosed, I would say that now awareness is much better.

22:12People are getting to know what autism is. We are getting a lot of advocates out there, especially mom advocates or parents advocates. My worry is always when someone calls you and say that they've been diagnosed and they live in this part of Ghana and you don't know where to direct them to because you know that there's no service in where they live. And that's always heartbreaking for me. I always say that I'm blessed enough to be able to support my son. But I also know that a lot of families are not able to afford the therapies and those who can even afford, some of them don't have access. Kieran, you're the parent of three autistic children.

22:49Let's talk about the good bits. the humor the joy the absolute lack of boredom probably the biggest thing is uh the joy that we take in each other's interests when you are autistic there is a probably a common narrative that most people know this term special interest that kind of floats around but it's much richer and it's much deeper than that and there is a whole embodied way that autistic people engage with the things that we are passionate about and that's not just our attention that that's every aspect of our being gets poured into that and there is such a joy when they want to share about their passions and that's really what is at the core of our little family is our shared ability to throw ourselves into things and i see that in my children every single day a lot of that means just ripping up all of these normative ideas and leaning into people's identities helping them to understand themselves, helping us to understand each other so that our children grow up to know themselves well and to live good lives that they want to live for themselves.

23:55Oh, absolutely. My son, Marty, is the joy of our lives. He's the center of our lives. And I wouldn't trade my journey for anything in the world. And what we all want is for our kids to be accepted for who they are and not for the world to constantly be trying to change them. Autistic individuals or people on autism spectrum have a lot to contribute. They are able to be productive members of our society just the way that they are. They bring joy to their families. They bring joy to their communities. They can work. They can attain higher educational degrees. They can do all the things, many of them, that other kids do.

24:33And I think it's our obligation, those of us who have a platform, to have a voice, to stand up and to speak out and to use that voice to push back against those negative associations and those stereotypes and to help people understand. People on the spectrum want what all of us want. They want to be loved and they want to give love. Areva, Gifty and Kieran, all parents of autistic children. Thanks to them and to all our guests this week for sharing their experiences. I'm Rahul Tandon and this has been the documentary from the BBC World Service.

25:33is a major blow against his economic policy. We have the details. Search for Global News Podcast wherever you get your BBC podcasts.