Woman's Hour - Parenting: The 'double discrimination' facing black children with Autism

Episode Date: January 29, 2020

Getting the right information and support to raise a child with autism can be difficult for any parent. But if the child is from an ethnic background, research has shown that this can act as a 'double discrimination'. Why is this the case? We hear from Pam Aculey whose oldest son has autism and now has produced a series of children's picture books. And Venessa Bobb who has two children with the condition and now runs her own charity - A 2nd Voice - set up to help families like hers.

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Hello, Jenny Murray here, welcoming you to the Woman's Hour podcast for parents. Now, it's not easy for any parent who has a child with autism to find good information and support, but research carried out by the National Autistic Society found that children from an ethnic background are less likely than white children to be correctly assessed. They're often said to have behavioural issues or difficulty with anger management. Nearly a quarter of them have been excluded from school and the society dubbed it double discrimination. That was in 2014 and six years on, nothing much appears to have changed.

Vanessa Bobb has three children, two of whom have been diagnosed with autism and she's set up a charity, A Second Voice. Pam Akili has three sons. Her eldest was diagnosed three years ago and she's produced a set of children's picture books. Pam, why do you use the phrase double discrimination coined quite some time ago? Like you said it was coined many years ago and unfortunately from personal experiences I still think that's completely relevant. My eldest son is mixed raised and he was diagnosed three years ago and we found it really really difficult to even get a foot in the door to get that diagnosis. I had to really really fight for it and when I did speak to health professionals I was basically told that he had behaviour issues and maybe had symptoms of ADHD and I had to go back for about nine months before I could convince them to try and start the process

of diagnosing him. Were you treated equally you and your husband? Not at all. Because your husband is white? Yes he is white Alex is white and it's quite interesting that you say that I think after the third time of going back I told Alex um you go on your own please um and you speak to the health professionals and we had completely different experiences um after the first time I've seen the pediatrician Alex came back and said um had a really really good discussion with him and he's basically said that yes we're going to start um the the process of diagnosing for autism um and obviously I was overjoyed at that point because that's what I'd been fighting for for such a long time but the key point is that I had to fight for it and I felt like my husband kind of went in there

um different questions were asked I felt that the questions were very much targeted to me as his mother, as motherhood and how I was, you know, bringing up my child. And for the dad to walk in and ask similar questions, but be told that, yeah, we're going to start the process, it did really hurt. It did hurt, I'm not going to lie. Vanessa, what about you? How difficult was it for you to get a diagnosis for your son and your daughter? The FANU was diagnosed in 2008 with autism, ADHD.

Prior to that, his challenging behaviour was just seen as my parenting skills. It's when he got excluded, that's where the alarm bells were there. But even though I thought he was just a bad child, because that's what I was told as a mother, once he had the diagnosis, I think that's where the problems more started. Nobody wanted to accept the label. For my daughter, Michaela, she was diagnosed with autism, ADHD and epilepsy between 2017 and 2018. It took longer for my daughter because they said that she was copying my son's behaviour. But for me, I just knew her behaviour was very different because her brother at the time by then was in a residential school. So for me, it was fighting a system

where everybody just said it was my parenting skills. This is very recent that your daughter had these problems. How common would you say these kind of experiences are, even now, when so much research has been done on it? It's still, I would say, it's always been there for communities, but I think when it comes to, as we're talking about double discrimination, we're talking about black autistic children, it would take 10 times longer. The evidence is there. When they do research, most of the research is aimed, as we've always been told, as middle class white boys.

It's not looking at the diagnostic tool where, when you're looking at black children, behaviour issues is always seen the first thing when they see a black child running down the street so when we're talking about my child is acting inappropriately they're quick to say it's because of my child's behaviour Why did you decide to set up your charity? I set it up because nobody was speaking for me it wasn't that it was for my son at the time I just felt as a black mother nobody was listening to me at the time I came in saying it's going to be for the black community by then I was like dealing with poor white families I didn't see nobody like me and that's when I thought let me just look at

community and not look at just the black community. And how important Pam have your picture books been for your child's development? They've been absolutely amazing I mean Walter was completely non-verbal up until the age of about four four and a half but we quickly realised that he was very connected with books and visuals and he used that as a means of communication almost and then I realised that there were no books where children like Walter could see themselves in the pages of those books and that's what kind of spurred me on to write these picture books to kind of champion inclusivity and diversity. And it's really helped him because he can now relate to the character,

not just visually, but just also through some of the things that the character does, which is very similar to him and his autistic traits. Why did you decide to write your own? Because I got so frustrated with having to go online and see there was nothing out there and I thought you know I can sit here and moan about the fact that it's not happening or I can try and add to that change and I thought right I'm going to write it because I'm writing it from personal experience as well and the feedback has just been phenomenal it's been it's been humbling. And it's been so great to

think that finally, our children are being heard and being seen. Because we all want to have that part of that belonging. And I think by having these books and showing children at an early age that differences are good and not something that we should be scared of, and we should embrace those differences. And that's so important how generally would you say autism is viewed within the black community once you've got your diagnosis what do people say it's difficult it's a tricky one because there's things like um depending on where you're from there's language barriers there's cultural barriers and stigmas um i have been speaking to a lady who english is not her first language so in her native tongue there's no word for autism so the closest they get to it

is someone who's got mental health issues so the stigma on both sides which makes it incredibly difficult for families and carers to get the help and support that they really need. What's been your experience of how the community sees it? I may be a bit controversial here. I would say, from my experience, being part of the National Society Diverse Perspective was that it took only 130 people that came forward. When we look at education survey, 11,000 people came forward. I would say my experience being in the white community, discrimination is that everybody will know

about autism, but the cultural perspective is always not looked at where that's where the discrimination comes. In the black community, my experience, I've always felt that I've always felt isolated. I felt that I've always been sabotaged. I've been told that I'm mentally ill. I've got issues. I seem to always be labelled that I'm the problem. So what I've had to do is just go alone and connect with other families where we've all just all come together and we've had to fight a different fight. So double discrimination for me is no matter where I am as a black mother, I'm fighting the fight because I'm always being told I'm still the problem

and I just need to get on with it How do you cope with them when you're out with them and they may be behaving in a way that surprises people? Okay, well my children are 14, 17 and 18 now So the two younger ones at the time I would say I used to be embarrassed The spitting, the biting, the slapping, the inappropriate behaviours But I learned to become thick-skinned now they're older they don't really want to go out with me not because I'm a bad mother it's just that they want to do things on their own they prefer to stay on their own or but people say

that I should force them to go out but they don't want to go out I've got to pick my battles wisely when it comes to when I decide that I want them to come somewhere with me. But I won't say that they're rude. It's just that when they're very direct in their conversation, people say, you know, your children have got no manners. They should know how to talk to people. It's just that if they don't know you, they're not going to talk to you. And that's more, I would say, my son in particular. My daughter now, they say that she learned how to mask because she was the one that was, as they said,

she was the abuse child because she went through a lot of emotional abuse in primary school because she was left undiagnosed how is your son doing um well water is sex um we tried him at mainstream school when he first started school and he lasted about five months and we pulled him out he almost started to regress um and we made the decision that he needed some more specialist one-to-one support so we moved him actually to a specialist school and the transformation has been phenomenal. It's like a completely different child, different learning style as well which is what he needs and I think sometimes in mainstream

they try and mould an autistic child to become more like a mainstream child and that's not the case. We should be finding what their strengths are and what their positives are and kind of harnessing those um as opposed to you know trying to dampening or silencing their autism which is completely the wrong thing to do. Vanessa you're nodding as everything Pam is saying. I went through four tribunal appeals with my son between 2009-2011 the first two I represented myself the last two I decided to get a legal aid at the time because I didn't understand what I was fighting for I just knew that my son struggled in a big class he went into a independent school he did well but again

when you he may do well in the school but once he's outside the school the resources weren't there so you found it was harder for me to try and maintain. Then he managed to get into a residential school where I would say everything just fit into place. He became Nathaniel, where he felt appreciated. His strengths were looked at. Michaela now, she was a school refuser. So once she got into secondary school, that's where everything went pear-shaped.

That's where she really got her official diagnosis. And I think as girls on the spectrum, they're the ones that I've left on the shelves because they have to struggle with a lot of you know hormonal things and for my daughter now I'm going through tribunal at the moment now with my well actually two of them the school she's going at the moment now is a specialist school she only started September last year she said mum I don't want to be there. I don't fit in. So what it is, is that even though you're quick to say, I want my child to be in a specialist school, we have to make sure that the school that they're attending is meeting their needs. Well, Vanessa, Bob and Pam Akuli, the best of luck to both of you. And thank you very much

indeed for being with us this morning. And again, you know, we'd like to hear from you if you have similar problems to the ones we've just heard about do get in touch with us you can email us or you can tweet and again you don't have to give us your name and of course if you have any ideas about things that we could discuss about being a parent do contact us You can email us or you can tweet us or you could even send us a letter. Bye-bye. I'm Sarah Treleaven, and for over a year, I've been working on one of the most complex stories

I've ever covered. There was somebody out there who was faking pregnancies. I started, like, warning everybody. Every doula that I know. It was fake. No pregnancy. And the deeper I dig, the more questions I unearth. How long has she been doing this? What does she have to gain from this? From CBC and the BBC World Service, The Con, Caitlin's Baby. It's a long story, settle in. Available now.