Why my autistic children don't need a 'cure' Vikie Shanks TEDxLeamingtonSpa

6:09AM Aug 26, 2021

Speakers:

Keywords:

nikita

people

autistic spectrum

autistic

autism

extremely

children

neurotypical

picture

creative

richard branson

life

defining

disabled

casey

struggle

perceptions

neuro

dyslexic

divergence

Okay, as Brian said, I have seven children, six are autistic, the seventh is severely dyslexic, and the two youngest also have cerebral palsy, as well as their autism. Thank you, Ryan, I need that. I want you to humor me for a moment. Could I just ask you to please just conjure up a picture in your mind of what that description looks like to you? Just think,

yeah, got a picture?

Help?

Does it look something like that? Yeah. Generally, a lot of people when I talk about my family will describe my children. A huge number of people see kids who are socially, totally inept, completely out of control, who have no understanding of the real world. They think my life must be almost impossible. They actually pity me and pity my children. I've even had people say to me that life can't be worth living. So here's a picture of my real children. Now, when you've heard that description, is that really what you pictured? Or was it more like The Addams Family, and if it was more like The Addams Family, you're totally forgiven. It's a it's a funny thing. These words like autism, dyslexia, ADHD, OCD, bipolar, they all conjure up quite negative images in our minds. And it was because of those negative images that a lady called Judy singer who was a sociologist, in late 1990s, coined the phrase neuro or the word neurodivergent. And it was her hope that at a stroke, she could change people's perceptions, away from the disorders and impairments of people with atypical brains, and more towards the talents and abilities that they have. And my own children run, they founded and run their own very successful award winning business. They're a girl band called relative blue. And they've also won so many sporting and academic medals and trophies that the cabinet that I had to buy to house them all is heaving with the strain. So Judy singer hope that she could change people's perceptions. But obviously, it wasn't going to happen overnight, changing one word wasn't going to change. Everyone's very deeply ingrained ideas of what these words mean. But what has happened is neuro divergence has given people with atypical brains, a generic term that they can use to describe themselves if they feel more comfortable with that. So am I saying we should do away with labels? No, I'm not. But a label or diagnosis should be a reference point, it should be a starting point, it should be a point from which we can say this person is autistic. So it's possible they struggle in these particular areas, so we can help them with those. And none of these things should be seen as diseases, none of these conditions should ever be seen as diseases. And actually, if it weren't for john Nash, who was the subject of the film, a beautiful minds, who experienced extreme paranoid schizophrenia, we wouldn't have a lot of the mathematical systems that our modern computer industry and military use even to this day. It's a well known fact that there is a disproportionate number of entrepreneurs who are also dyslexic. And studies have shown that the reason for this is that because their brains don't quite work in the same way, in certain areas, the brain develops in other areas, and they become extremely creative. And my own daughter, Casey, is severely dyslexic. But it hasn't held her back in her chosen field of fashion design. In fact, it could be said that it's actually enabled her she actually made my dress, which I hope you like. Casey is extremely creative, but she also has very formidable spatial skills. She can picture an item of clothing in her mind, and then she can convert that picture into the actuality of the garment. And I have to say that I'm extremely grateful to Richard Branson for being so open about his dyslexia because he's given me an icon that I can hold up in Have Casey and say, Casey look for Richard Branson's done, imagine what you can do. And she now says to me Mum, if Richard Branson can do it, I can do it kind of come full circle. But Richard Branson is incredibly creative. There's no denying that Richard Branson has brought his some of the most creative and different things that we've ever known, he brought his Tubular Bells. He's now bringing a space tourism. He also brought us the Sex Pistols. Now, whatever your feelings about the Sex Pistols, it doesn't really matter, because the reality is that they were extremely different

for their time. But it's also a fact that they actually ended up defining an entire generation. So Richard got it right. Silicon Valley is full of people on the autistic spectrum. Computers seem to be an area where their brains work extremely well in that kind of environment. But it's not the only area where their brains work extremely well. There is actually a firm of architects near here, who actively seek out people on the autistic spectrum to work for them. They've recognized that their focus and their ability to see patterns is extremely useful in their particular industry. And it's widely believed now that both Mozart and Einstein were on the autistic spectrum. And that would certainly explain why they were both so focused, and such radical thinkers. And we need radical thinkers. We desperately need radical thinkers, we need people who are not only capable of radical increase of thinking, we need people who aren't held back by social convention, people who aren't afraid to express their ideas, people who aren't fearful of the backlash of public opinion. And so, to a large extent, neuro divergence drives innovation. And pet Belbin, I don't know if it's Dr. Bell but Bell but Meredith Belbin did a huge amount of research on teams, and not just teams, effective teams. And he discovered in his research that an effective team was made up of numerous different components. But the one person that no team could be as effective without was the one he called the plants. And he called this person the plant because he planted one into every single team you worked with. Now, the plant was someone who was a radical thinker, with a loose cannon, very, very creative. And what he discovered was that every team needed this person in order to be as effective as they could possibly be. So how do we nurture these people? How do we nurture on your divergent population, who so often feel so alienated in our world, who don't quite fit into a neurotypical way of doing things? Who find the way we live a little bit strange and everything a little bit too much

for them?

I think we need to look at workplaces, we need to make minor adjustments that will allow them to feel more comfortable, we need to look at our education system, we need to start teaching the person, not the condition, not dealing with the behavior, but helping the person underneath and the abilities they have. And there's so much we could do to make these two people feel comfortable, and not feel as if they're, they don't fit in. They don't deserve to feel that way. They have immense qualities and attributes. So we need better understanding we need to value these people alongside everyone else. Every person should feel valued as having something to contribute to society. So we need to enable them, not disable them. We need to make them feel as though they have something valuable to offer. And am I saying that neurotypical people aren't capable of being creative? And of course, I'm not. That would be ridiculous. But what I am saying is that neurodivergent people, because of their differences are so often overlooked or sidelined. And not given the opportunities they should be given because the perception is that they will struggle in every area just because of some areas that they may have challenges with. So myddleton Nikita, who I love dearly. Nikita is quite severely autistic. And when she was about nine We had a psychologist visiting the house who was actually doing some work with Osborne, who was struggling with some of his difficulties with autism. And while she was there, the kisa went into meltdown. Now, this was a regular thing, it happened a lot. And the psychologist said to me that she had never, ever witnessed such extreme behavior in a child on the autistic spectrum. And that really frightened me. But you see, Nikita would, she would not only go into meltdown, she would shut down completely. She you couldn't break through to her. She couldn't express her feelings. She couldn't verbalize her needs. She couldn't tell you what she needed. And her compulsions were absolutely paralyzing for her. And I must be I must be brutally honest. I'm so ashamed.

I'm so ashamed now to admit.

I actually wrote Nikita Roth,

I didn't believe that she could ever live anything resembling a normal life. And I've been told by professionals that she would one day need full time residential care. And I believe that it's a terrible thing to feel that you wrote your own, your own child off. Because of her struggles, I applied to the local authority. And I managed to get a statement for her. And Nikita started at a wonderful special school near here in Warwick. And they were fantastic with her, even though she didn't look at anyone, or talk to anyone for months and months and months. When she started there. They were absolutely brilliant and encouraging the keytar to take part in all sorts of different extracurricular activities, excuse me. And they would take her on all sorts of events. And they would take on Special Olympic events all over the country, sometimes in big stadiums, as she was on some one such event one day, and I went to pick her up. And everyone the coats, the teachers were all jumping around like two year olds. And they told me that Nikita had won four gold medals that day. Now, I was overjoyed, because here was a child who was struggling and failing it every single way. And maybe maybe we'd found something that she was actually really good at something that we could focus on, and bring her up in and give her something positive. But on the drive home, she started to cry. So I asked her what was wrong? And I didn't really expect an answer. Nikita normally couldn't tell you what was wrong. She couldn't explain her feelings. But on this particular occasion, she code and what she told me was heartbreaking. She said, I hate being disabled. And I hate going to special school. And for me, that was heartbreaking. Because there was nothing, nothing I could do to solve those problems. So I thought for a minute. And I said to her Nikita, you know, there are some things that I'm good at, that you're not very good at. And you know, there is some things you're really good at that I'm really not good at. As it is there are things that I'm good at that you're not and things that you're good at that I'm not. Does that mean I'm disabled as well.

She looked at me

with a quizzical look. And she said, Well, you're not disabled. I said, No, I'm not. She said, Well, maybe I'm not then. And that was a massively defining point in the kitas life because I started to see an imperceptible change in her. I started to see her see herself as a person with abilities rather than as someone who was disabled. And then year 11 came we were looking at what she would do next. I had my own very definite ideas about what the teacher was going to do in year 12. She was going to stay at school to sixth form and have a year to develop and confidence in life skills. I didn't recommend the key to having very, very different ideas and I certainly didn't recommend her determination because Nikita had decided she was going to mainstream college 20 miles away to do Performing Arts following in the footsteps of three of her older sisters. And it was no budging her. So in The end I had no choice but to give in and the grade. The day she was due to start, I woke up to the sound of Nikita being violently sick in the bathroom. The anxiety had completely taken over. I got her in the car, we drove to college, we pulled up. I said, right, let's go in, she said, changed my mind. I'm not going. So she was about to give up on her dream. So I wasn't having that. So I cajoled and begged. And eventually I tricked her to go into the college. And she stayed the whole day. I didn't get the phone call. And when I picked her up, she came out and she looked quite some, she looked quite happy. And I said, How did it go? She

said, Okay.

I said, What did you do? She said, Well, we had to do an icebreaker. We had to tell people, something about ourselves, and tell people what we thought our greatest strength was. Now before Nikita started college, her biggest, biggest worry was whether or not to tell people about her autism, because she knew that potentially, people knowing that could define their opinion of her for the next three years. And she didn't want that. But she said when it came to her turn, she decided in that moment to tell everyone, and she told them not only that she's autistic. She also told them that she saw her autism as being her biggest strength. And in that moment, Nikita took total ownership of who she is. And I know how much courage that took, and how far Has she come? Since the time I was told she would need full time residential care. And I love I absorbed all my children, but I respect them so much. Because each and every one of them have done the same. They take total ownership of who they are, they will happily tell people about their particular neuro divergence, they don't have any problem with it. And if they upset someone or they say something inappropriate, they'll just say to people, I'm so sorry, I didn't mean to upset you. But I'm autistic, and social skills aren't my forte. And so, please, we have more than enough evidence that neurodivergent people have so much to offer society. Isn't it time we started to recognize them for their talents and abilities, and not see only their shortcomings. Isn't it time we nurtured them and brought out the best in them and help them and really isn't it time that we changed our perceptions and our attitudes towards mental health? On absolutely every level. Thank you.