70. Sophie Dow: No mind should be left behind

Sue Stockdale talks to Sophie Dow, a former freelance correspondent, writer, and founder of the Salvesen Mindroom Centre about what happened when she went on a search to discover a diagnosis for her daughter Annie, who had learning difficulties, and how it led to her to starting up a charity.

Sophie’s search took her to a conference in Gothenburg in 1998 – one of the very first in the world on learning difficulties. Sophie spent two days listening to desperate statistics about exclusion, bullying, loneliness, divorce, and suicide which she found totally unacceptable and decided to do something about it. Her bold vision for the Salvesen Mindroom Centre was created. It is a leading Scottish charity helping and supporting children and young people and their families who are neuro divergent, previously referred to as having learning difficulties.  The charity has 22 employees and have helped thousands of children and families since its’ inception.

Sophie’s book When life doesn’t follow the script, about life with her daughter Annie, the setting up of Salveson Mindroom centre and neurodiversity was published in her native Sweden in 2018 and has received five-star reviews.

Find out about Sophie Dow and Salveson Mindroom and It Takes All Kinds of Minds 2023 conference

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Key Quotes

‘We didn’t have any guidance or directions or anything. So thanks to being a journalist, I just set about doing research.’

‘There were 2,700 delegates, professors and teachers and head teachers and speech therapists at the conference. Anyone needed to support and help a child that’s struggling.’

‘I realised this is a public health issue that hasn’t been addressed. It’s still a public health issue today in 2022.’

‘Every single person that’s born has the right to a dignified life.’

‘ I don’t have some £70,000, but I have a vision.’

‘We are all only human beings.’

’25 genes out of the 22,000 or so that we all need in order to have a good chance at life were missing. And those 25 genes are the cause of Annie’s mental handicap.’

‘The big challenge of the 21st century is to try and understand more about how the brain and the mind works.’

Sophie Dow Transcription

Sue: Welcome to the podcast Sophie

Sophie: thank you very much, Sue.

Sue: It really intrigues me that this statement when life didn’t turn out, as you imagined, so maybe there’s a good place to start is how did you imagine it when you were young?

Sophie: Yes. So I think you’re referring to the title of my book, which is when life doesn’t follow the script, which it doesn’t for anyone really. So I’m Swedish. You might be able to hear that on my accent, which I have managed to maintain despite 40 years in the UK. I was working very happily at Swedish TV. I was as an assistant director on the daily news program, and this was in the early eighties, I had decided I was going to eventually progress to become a director and then eventually take over the sports department at Swedish TV. They don’t know that. And I think that. they can thank their lucky star that life didn’t turn out like that. So I had my career path planned out and I was very happy. I was single 28. I think I was. And then I got an invitation to a wedding in New York which I would have loved to go to, but my salary from Swedish TV wouldn’t allow a return trip Stockholm New York in 1981. So I had to say no, and I was pretty miffed to have to do that.

However, three weeks before the wedding, I get a letter from a lawyer saying I had inherited a woman that I had never heard of in my life and my sister and I, and our two. plus 12 people we had never met in our lives, all inherited £700 each from this woman who turned out to be my paternal grandmother’s sister. So I took the £700, ran through a travel agent in Stockholm, which is still there and bought a ticket to New York. At that wedding, I met my Scottish husband. And that in a nutshell is how the sports department at Swedish TV can thank their lucky stars because I moved to London in 1982 to live with Robin.

Sue: Well, it wasn’t that serendipitous to get that inheritance. And then what happened next?

Sophie: So then. Arrived in London, nobody knew who I was, nobody cared. I had, fantastic letters of recommendation from the bosses of Swedish TV, but that didn’t matter to anyone in London. I managed to somehow make my way into the Head of Granada television. I can’t remember how I did that. Brought to my two letters of recommendation to him and thought it would be a matter of minutes before , he would have offered me a job. And this man was extremely irritated at having to meet me and he paced up and down and shouted angrily. Why on earth would I employ you? And I was so taken aback by that, that all I could think of saying was, I’m a nice person. And he said, well, I can tell you they are a hundred other people. I would much rather employ rather than you. That was a very humiliating moment. And I remember taking the Northern line home with tears of humiliation running down my face but it also showed me that I had to really think outside the box and find another way to make my way in this new country that I lived in. So I am a journalist, so I just started to build up a network became a freelance foreign correspondent for Swedish press and media and radio.

Sue: And as your career developed and you made the decision to have a family and then how did that shape to the next stage of your life?

Sophie: Yes. So I had twelve years as a foreign correspondent and loved them. I had a fantastic time. My was culture. So film theater. Human interest stories. And I interviewed all the big film stars, which was wonderful and fun. In between Robin and I had two children. So we had James who today is 34, 6 foot five tall, Swede Scottish person. And Annie came along Annie is 31 and Annie is mentally handicapped. So that completely changed our world. And eventually when the children were seven and four left London and moved up to Edinburgh in order to give the children a sort of more freer childhood up here. And that’s also when we started to look into what it was we were facing with our daughter.

Sue: And when you did try to get answers to the questions that no doubt you had in your mind, what did you discover?

Sophie: Well, first of all, try to get answered. Is not easy, it’s still not as easy. It we clocked into the sick kids here to try and get some answers. And it was a two year endlessness of appointments with professionals that we didn’t know, had never met, trying to understand what It was we were facing why Annie wasn’t behaving and functioning, like most other children.

In the end after two years the conclusion then this was in 1997, I think. So Anna was seven at the time was that the diagnosis was brain damage that occurred during pregnancy. Today when Annie’s 31. We know that wasn’t right, but that’s was as little as they knew then. And I remember after having been to see the consultant getting the, the definitive diagnosis, we thought it was then the sick kids said, well, thank you very much. We’ve done our bit. And I remember standing outside the sick kids completely bewildered because they didn’t give us any further information. I remember standing on the pavement, thinking, what do we do now? And that my inner compass had no north, south, east or west. It just went round and round around like in the north pole I’ve read your book. Sue it’s an excellent, well, my, my inner compass was like the compass that you described when you go to the magnetic north pole. It didn’t stop anywhere. I had no answers. We didn’t have any guidance or directions or anything. So thanks to being a journalist. I just set about doing research. So what do I do? I talked to everyone, everyone I could think of. Eventually I was given a book so happened to be in Swedish by a fantastic professor of psychiatry called Christopher Gillberg who is still one of the world’s leading experts on any form of learning difficulties as it was called them neurodiversity as we call it now. The title of that book was one child in every class. I read that book and realize that that was the realm that where we belong, which was learning difficulties. So ADHD, autism, Tourette syndrome, OCD, and so on. I’m sure you’ve heard of all of them. He described all of that and I thought, well, this is the area where I need to focus my research.

And then I thought, you know, the title was one child in every class. And I thought, oh, is it that common? Because up to them, we had thought we were the only family in the world with a child like Annie. Then Christopher Gillberg it so happened That he was organizing a big conference in Gothenburg in 1998. So I flew there thinking still, we were the only ones in the world with a child like Annie I step into the auditorium and there are 2,700 delegates. In 1998. If we Mindroom, we are organizing a big conference next year here in Edinburgh, our sixth conference. But if we get 2,700 in 2023, I’ll be really happy.

So in 1998, that was phenomenal. So I step into the other 2,700 delegates and my first thought was we are not alone. And then I looked at the demography of the delegates and they were parents like myself, they were grandparents who wanted to help, but didn’t have the tools to do so. They were professors and teachers and head teachers and speech therapists anyone that is needed in order to support and help a child that’s struggling. So then I spent two days listening to desperate statistics about loneliness bullying, exclusion, prison, statistics divorce in families, and even children who were thinking about suicide. And I found that completely unacceptable. I still find it completely unacceptable.

Sue: That must’ve been quite a relief to realize that you weren’t alone and then to get those statistics and information, I’m wondering what that caused or motivated you to do.

Sophie: Yeah, absolutely. It was a reassurance, but it was a reassurance that gave me force because I knew I didn’t have to plough my own furrow well, I have done in one sense, I realized actually this is a public health issue that hasn’t been addressed. It’s still a public health issue today in 2022. So you were asking what I did. Well, I found it utterly unacceptable. The thought of going back to home to Edinburgh and to say to Annie, I’m really sorry nothing can be done was not on, so I decided that to do something about this. And I felt I could. So the vision for Mindroom, Salveson Mindroom now called, was born then and there. So I flew back home and I told Robin what I had experienced and what I had understood that this is a public health issue that needs addressing. And I told him that I had a vision and I knew I could deliver it.

Sue: And other people at that point, Sophie might see there’s an issue. Hope that there could perhaps have some sort of impact. I’m wondering what gave you that inner belief that you could do something that would effectively change the way that today people with learning difficulties on their families are supported.

Sophie: Yeah. I have had that question quite a lot. It’s been 20 years and while since I can’t answer it, it just is innate the strength within me and I should thank my mother. My father died very early, but I should thank my mother who was also a very strong person, but what drives me is human rights. Every single person that’s born has the right to a dignified life. What I saw and heard at that conference was none of that. I find that unacceptable and it’s still my driving force. We live with Annie and she has just as much right to a dignified life as you and I. So it’s unacceptable that that’s not the case there. However, I think society creates or emphasize says someone’s handicap on is completely at ease with being mentally handicapped. We now know she’s mentally handicapped and I can talk about that later, but she’s completely at ease with that. She has no problem with it, but society has a big problem with anyone who falls out with the norm.

Sue: So with that inner energy, that inner strength that you brought to wanting to make a difference, how did you then set up the charity and how has it developed since you founded it?

Sophie: Yes. So I’ve never done anything like that. I had been my own boss. For the past 12 years, writing my articles and sending my invoices And nobody could really tell me what to do and here I had to really start from scratch and learn what is needed when you set up an organization judicially, economically and so on. And that’s not my strength. I have likened it to, to I dunno if you’ve seen the film Free Solo you know, El Capitan is a very vertical piece of rock actually. It felt like that at times, and I was very much outside my comfort zone, but I believed so much in the vision that I had created myself that I just kept going. I remember. Robin saying to me, Robin, who has had a career in corporate life. And so on, he said to me, you have to have a, a board when you create an organization. I said, what a board? Does that mean I have to listen to what other people think I should be doing? And he said, yes. And I said, oh, how many?

And he said, at least six. So I set about putting together what I thought was a board. You have to bear in mind. I was in a new city and part of the country, nobody really knew me. And in order to put a board together, it’s advantageous if you have a previous network, but I didn’t have much of that. So I put together a board which consisted of a very good friend of mine who was super. Very funny and has a son who is also learning disabled, Robin’s sister, because she was extremely well organized and a friend of ours who used to be Robin’s former business partner, it’s all. And then I presented this suggestion of a board to Robin and he said, what do you think this is some sort of play ground and I said, what do you mean? And he said, you can’t just have a board with friends. You have to, find the right people even if you don’t like them. But if you think that they can contribute to your vision and to the organization. You should ask them. So that was a steep learning curve. I managed to put the fantastic board together and we got going, I would say in 2000 really launched ourselves in 2003 with a big conference at the Edinburgh international conference centre. That was the launch of what was then called Mindroom which is now called the Salveson Mindroom Centre.

Sue: And from not knowing about how to set up a charity or an organization to having a conference at the Edinburgh international conference center, which for the listener whos not been to Scotland its one of the premier conference venues in Britain. How did even that happen?

Sophie: Well by that time I attended many conferences very often and pretty crap venues, where the technology didn’t work that sort of stuff. And I have decided that the whole issue of what we now call neurodiversity is a huge issue, and if we’re going to do something about it, everything that we do has to be top quality what we say, what we produce, where we have conferences and so on top quality. So the EICC, was an obvious place to go to. So I go there, I suppose it was 2001 or maybe 2002, because it takes time to plan a conference. And I said, hello. I would like to have a conference here. I’ve never done anything like that. And they said, oh yes, of course. That. It is £70,000. And I said, Well, I don’t have some £70,000, but I have a vision and here’s my vision. And I said, so could you defer all the invoices please, and somehow they said, yes, that was amazing. And then I proceeded to invite 16 of the best speakers I had listened to through the years. And I said the same thing to them. We need you here in Scotland. We don’t have any money, but we have a lot of whiskey and my husband is a member of Muirfield Golf club so if you want to play golf, you can play with him. Please come for free. And all 16 said yes, and they came from jail. They came from Oxford, they came from Sweden, they came from Australia, they came from Berkeley and so on. And then I had never done a conference either. Anyway we opened the doors and a thousand delegates came and that was the launch of Mindroom.

Sue: Wow, what a start. It strikes me that the mindset that you had at that start point about valuing the charity valuing what was going to be said is actually a reflection of what your overall messages about society and how it needs to value everybody.

Sophie: Yes, that’s a very good thought. I think that’s also how and why we have been successful is you know, I do quite a lot of public speaking, both in Sweden and here. And, we are all only human beings and neurodiversity or learning difficulties as it was called for so long. It exists in every family, whether you’re a Royal or, or not as it were I do is I, I always sort of put it on that level. We are all only human beings.

Sue: And what does the Salveson Mindroom Centre do? 21 years later. Here you are. What services does it provide?

Sophie: So the main part of what Salveson Mindroom does is what we call direct help and support. And that is in effect like a clinic. We help anyone that contact us whether they have a diagnosis or not. Actually, it’s very important that we say that, because right now It has been for years, there is a more or less a two year waiting list for a child or a family to get into the system and get the diagnosis. And those years, are lost years, you don’t have two years to wait. So we have always said we help anyone who contact us, whether you have a diagnosis or not. And we help the child always with the child at the center, we help the family. Whatever it is that they need, whether they to guide them towards a diagnosis or we mediate in schools, or we give advice for transmission, when they leave school or when they go from primary to secondary and so on, those are very crucial times in a child’s life. So that’s, what’s the direct help and support does.

Since we started, we have helped tens of thousands of families, but there are so many more still that needs help. We also do workshops and we collaborate with the general teaching council for Scotland. We advise the Scottish government on these issues and so on, and we have our own. Research center at Edinburgh university we have always said that we need to work with the scientists. We who are further down the line we need to understand what happens in the brain in order to be better prepared and better help further down the line. So we have our own research centre at other universities headed up by professor Sue Fletcher-Watson, who is a professor of developmental psychology. It’s called the Salveson Mindroom research center. And together with Salveson mind room, we work out different studies and so on. And ultimately we want to reform the system because it isn’t working a two year waiting list, if that isn’t acceptable, but that is a very big task. But we’re working on it.

Sue: It seems like you like a bold vision, Sophie not something that’s a small vision, but something ambitious. I’m wondering if you were asking Annie, what she makes of, what you’ve done, what would Annie be saying?

Sophie: That’s a really nice question. Sue. Annie’s very proud. Whenever we’re together and if I’m either introduced as the finder, or I say that I am the founder, she will say, excuse me, I am the founder of Salveson Mindroom centre. She’s completely onboard with that. And she’s very proud of what we do. And at ease with, as I said before, being someone who is mentally handicapped. So shall I tell you how we know not what diagnosis she had? So, we were looking and asking everywhere for the better diagnosis than the one we got in 1997, which was brain damage that occurred during pregnancy. It wasn’t specific enough. So I kept looking and asking and eventually I asked Christopher Gilberg who had by then become a friend and had spoken at several of our conferences and I asked Christopher if he would assess Annie and look at her. So he said, of course, and we flew over to Gothenburg, the whole family, and he assessed Annie for two days. Still couldn’t pinpoint what was the reason or the diagnosis, but he said, I think you should look at something being chromosomally, not right.

And that wasn’t something we had thought of before, by this time Annie was 13, still couldn’t read and write and so on. She still can’t really read and write has no concept of time or of consequences, she has many, many strengths, but there are also weaknesses. So we flew back. I contacted David Fitzpatrick, who is a professor of genetics here, another row. And I asked him if he could have a look at, Annie for a specific chromosome fault that Christopher had suggested he did took her blood sample in 2003 he said he didn’t think it was what Christopher had suggested. And it wasn’t. But David said, can I please save Annie’s blood sample while I wait for better technology? And we said, of course, so four years later on the 18th of July, you have these dates burned into your memory. 18th of July, 2007, we get a letter second-class post from David saying, dear Sophie and Robin, I now have a stronger loop in my microscope and I have screened down this blood sample and she does indeed have a small, but significant chromosome deletion on chromosome one. the upper arm. 25 genes out of the 22,000 ish that we all need to have in order to have a had a good chance in life were missing. And those 25 genes are the cause of Annie’s mental handicap. She is the only one in the world with this particular chromosome profile. She still is. So we asked if asked Annie if we could call it Annie’s syndrome in order to push boundaries and also make it a more personal thing. So it’s now called Annie’s syndrome rather than the Fitzpatrick syndrome which it should have. Because it was David who discovered it.

Sue: Wow. So you’re, you’re making a mark, you and Annie and the charity in the whole field of neurodiversity.

Sophie: Yes.

Sue: As you look into the future, you talked about the conference coming up next year. What’s that going to involve?

Sophie: So we being a journalist a very big, an important part. of Salveson Mindroom has always been for me to create awareness and to get information out in order to tackle the very damaging stigma that still surrounds any form of learning difficulty. I get very cross when I think of that, because the stigma is really based on ignorance. So it’s very important to get information out there. So we have had five very big conferences through the years parallel to all the other work that we’ve done. And next year we are now staging a very big international event back at the EICC 20 years on from when we first, were there it’s a big conference called it takes all kinds of minds and it will talk about all kinds of neurodiversity.

Sue: So any of our listeners who are interested to find out more about that conference, how might they do that?

Sophie: Well, there is excellent a website for the conference, it’s called, it takes all kinds of minds, and so the website is called ITAKOM.org and if you go there, you’ll have all the information you need for the conference. And also if you book now you get very advantageous early bird prices. So for instance, for private person, personally funded as we call it. If you book now early bird is 225 pounds, we have 50 speakers so far, very high profile, and they range from scientists to people who are experts on the benefits of surfing and mental health, for instance, it will span the whole thing. So really to, to summarize it is about science and reality.

Sue: Wow, that sounds like it’s going to be quite an event. And if you were. I guess sharing any of the wisdom or learning that you have gained during the years what would be a message you’d want to leave for our listeners ?

Sophie: In one sense that’s a multifaceted question. For me, I always talk about, Annie has shown and so many with her has shown us a completely different universe from the universe that we thought we knew before. And Anna’s universe is just as valid as yours and mine. I am absolutely fascinated by the brain and the mind. And so we work with neuroscientists. I love hearing what they have to say. Every year I ask them, they find it rather irritating because they think it’s a very simplistic question, but I asked, I asked them how much do we know about the brain today?

One of them says at the best one and a half percent. And another one says, Well, maybe a little bit more, but not even 10%, all of them say that is the big challenge of the 21st century is to try and understand more about how the brain and the mind works. And for me personally, I suppose to answer your question. First of all, I find that very exciting. It’s like discovering a whole new continent, then I want to see a paradigm shift in how we look at and understand the brain and the competence of everybody. so with the further understanding of the brain I hope we’ll come a much more inclusive way of looking at everybody and inclusive way. That includes all kinds of minds and make sure that no mind is left behind.

Sue: that’s a powerful message from which to leave us. One thing I didn’t ask you about Sophie, it was about your book that you wrote. It’s written in Swedish I understand soon to be in English as well. I understand?

Sophie: Yes. So I one of the things of being a founder, I find their responsibility is to know when to hand over to the next person. And I see Salveson Mindroom as my third child, but a child should grow up and leave home. So I’ve always been very aware that my responsibility is to hand over when I’m no longer as effective as a CEO if you like. You come to a point and I know you talk about entrepreneurship in your book. You know, I think I am a starter up person. And then there comes a point when it’s very important to hand over to someone who knows how to take it to the next step. So I did that a few years ago and I’m not quote unquote only on the board which allowed me time to write, which is what I really love doing. So I was asked to write the book by a Swedish publisher that in itself was wonderful. So I wrote this book called when life doesn’t follow the script ‘När livet inte följer manus’, that’s in Swedish was published in 2018 and if I made boast a little bit, it had five star reviews. It’s not a sad book about having a child that’s mentally handicapped it’s a book about life with Annie, which is never. It’s I talk about neuroscience and I talk about all the struggles that was involved in setting up an organization when you’re not a business person and so on. And it has a lot of hope that book. So it’s been translated now to English and it will be ready for the conference next year. It’s also being translated into French.

Sue: Wonderful. So your mission to generate greater awareness that will happen with those other language versions of your book coming out into your course.

Sophie: I hope so.

Sue: I really enjoyed our conversation so far. I think it’s a very important topic for all of us to be more aware of. And I’m sure that our listeners will want to discover more about Salveson MIndroom centre as well. How might they do that on the internet?

Sophie: web address is www.mindroom.org, M I N D R O O M.org. I also have. Websites now which is Sophie-Dow.com

Sue: Wonderful. Well, it’s been a real pleasure to speak to you Sophie today, to hear about your journey and the unexpected and wonderful outcomes that have happened when your life didn’t follow the script.

Sophie: Nor did yours sue. I recommend everyone to read your book, explore a life in adventure. It’s so inspirational. I will never go to Antarctica or Greenland or Kenya or the magnetic north pole. So I was very happy to read about it. And your thoughts and struggles as well. And how life has taken you in the most unexpected directions.

Sue: Well, there’s the commonality between both of us, Sophie, and thank you so much for your time.

Sound Editor: Matias de Ezcurra (he/him)

Producer: Sue Stockdale (she/her)