'I fear for the safety of my black autistic son'
Melissa worries her teen might bring unwanted attention to himself.
Melissa Simmonds is black and autistic, as are her children. In this episode she talks about the anxiety she feels when her 16-year-old stims in public, and what he might do if stopped by police.
How would you feel if a builder arrived an hour earlier than expected? Listener Daisy was overwhelmed when her plans had to suddenly alter and says 1800 Seconds on Autism helped her get through. You're welcome.
This is the last episode in the current series. We've published regularly since March 20, the start of the covid-19 pandemic, and it has been a pleasure to be with you during such unsettling times. Please stay subscribed, because you never know when a one-off special might appear. The stim@bbc.co.uk inbox is still active too.
With Robyn Steward and Jamie Knight. Produced by Emma Tracey.
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Transcript
1800 Seconds on Autism, Episode Eightbbc.co.uk/ouch/podcast
Presented by Robyn Steward and Jamie Knight
[Jingle: 1800 Seconds on Autism. With Robyn Steward and Jamie Knight]
[Intro]
MELISSA -Ā Thereās no books. Thereās no person in a position of power who gets up and talks about autism whoās black.
JAMIEĀ -One of the stims that I developed during lockdown was rubbing my hand down the side of shelves in a supermarket.Ā
MELISSA -Okay.
JAMIEĀ -I didnāt even know I was doing it. And Iād go click, click, click, click. And I kept getting store detectives come up behind me because theyād think that I was trying to steal stuff.
[Music]
JAMIEĀ -Welcome along. This is the last episode in the current series of our podcast that makes you think about how you think. Thank you for being there. Iām Jamie Knight.
ROBYN -Iām Robyn Steward. On this episode our guest, Melissa Simmonds, talks about being a black autistic woman. Three minority groups for the price of one.Ā
JAMIEĀ -How would you react if a builder came to do some work in your home and arrived ahead of schedule? Argh! Donāt like that. Listener, Daisy, has been there and will tell us how she coped. Letās grab the bull by the horns and jump right in. And that totally came from the script. [Whispers] Iāve no idea what it means.Ā
ROBYN -Thanks for being here. Itās the last episode of this series. Sadly, Jamie is only here for half of this episode because he ran out of spoons, so in the last half itās just me. But, jumping straight into the podcast, hereās Jamie introducing our first guest.Ā
JAMIEĀ -Melissa Simmonds is black and autistic and mum to two autistic children. Hello, and welcome to the show, Melissa. Please could you tell us about yourself?
MELISSA -Yeah, Iām in my early 40s now. I was diagnosed with autism, I think itās about five or six years ago, and I received my diagnosis after my children, which is becoming increasingly common. Luckily I live in Sheffield and they have an autism studies masters that you can do at Sheffield Hallam, and so I just thought Iād go on there to understand autism better so that I could understand myself better and just make sure I can support my kids as best as I can.
JAMIEĀ -Awesome. So what do you do in autism land?
MELISSA -I started something called MisTaught and I started it to actually educate children about autism. I then started as well to educate faith settings, because I found when people receive a diagnosis in their family they kind of want the support of their community, and for some people thatās their faith community. And actually when they go to church or to temple or to mosque thereās not a lot of understanding, because a lot of times they expect children to be quiet or behave a certain way.Ā And Iāve also started to just do lots of talks about autism, because unfortunately through university my first assignment was looking at the late diagnosis in black children, and thatās when I realised there are no journals, articles, there are no books, thereās no person in a position of power who gets up and talks about autism whoās black. So although I went to university because I wanted to be educated about autism I soon realised that actually I would have to be in a position where I was educating other people about it.Ā
ROBYN -How old are your children?
MELISSA -My daughter is almost 12, my son is almost 16.
ROBYN -What words do you use to describe yourself?
MELISSA -I call myself black. I donāt like BAME, which is Black, Asian Minority Ethnic. I donāt like BME, which is Black Minority Ethnic, because that does not describe me as an individual. Iām a black woman. And in lots of organisations they say they have a BAME representative or theyāre recruiting BAME individuals, but I always ask what does that mean, because when you look at the ONS, which I canāt remember what it stands for nowā¦
JAMIEĀ -Office of National Statistics.Ā
ROBYN -Office of National Statistics.Ā
MELISSA -Thatās it, thank you.Ā
JAMIEĀ -[Laughs] Trust me and Robyn to know that.Ā
MELISSA -Ā ā¦and you see the categories of race or ethnicity, there are so many different colours under the umbrella of BAME. And so actually, if you say well weāve got a BAME representative to talk about the experiences of autism in the BAME community, actually if a Chinese or Japanese person gets up and talks about their experiences of autism Iām kind of, like, 90% certain that their experience is going to be different from mine.Ā Even if somebody from the Ugandan community or Nigerian community got up and talked it would be different for me because Iām a black British Yorkshire lass, and my parents came over to the UK from Jamaica. The majority of the black community want to be referred to as black. So call me black. And if youāre not sure, ask me how would you like to be referred to, just like how itās really normal now for us to ask people about their pronouns. We wouldnāt hesitate to ask that question now, yet we feel uncomfortable to ask about race in a respectful way.
JAMIEĀ -Itās a similar sort of thing with asking if somebody prefers āwith autismā or āautisticā. You know, thereās an overwhelming preference towards autistic, but thereās still a lot of people who prefer person first language, so the best thing to do is to ask somebody.Ā
MELISSA -Any of the conferences or workshops you go to, all the speakers are white, and itās not good enough. And Iām not saying, oh you need to hire Melissa, thatās not what Iām saying, but what Iām saying is, you canāt just have female and male representatives from the autism community and feel like youāve done your quota and say, well thatās enough, because actually, no itās not.Ā Ā
ROBYN -How would you go about, you know, if you were putting on a speaker series how would you go about finding autistic people who arenāt white?
MELISSA -Twitter, I think, is very good, where actually you can learn so much from the non-white communities, but you have to put the work in. There isnāt a single answer, but itās about you kind of putting the work in and finding people and connecting with them and then taking the relationship from there.
JAMIEĀ -Weāve got a lot of podcast listeners who want to ask about masking, but Iām guessing that thereās something more interesting here. Thereās intersectional masking where youāre both masking perhaps black culture things and autism things at the same time. Thereās like a double, double empathy problem. Does that make sense?
MELISSA -Yeah. I call it triple because the UK is a white society set up with systems, rules, laws, that cater to the white community. And so I have to conduct myself in a certain way that is pleasing to the white community, because if I donāt do that then Iām faced with aggression or negative assumptions on me. So thatās one mask that Iāve had to learn from a very young age anyway. And then to be autistic Iāve had to mask that, to act in a certain way in society.Ā So Iāve acted like I could cope with certain things that I couldnāt cope with. I learnt everything through observation. Iām not sure how much just comes to me naturally, but I know that I figure out what is fashionable through observation, I figure out what the right thing to wear is through observation. I figure out what is deemed beautiful through observation. Everything I do is through observation, I donāt really have an opinion on something, or I never used to have an opinion, it was through pure observation. So I learnt to mask everything as an autistic individual.Ā And then, even though as a black person I can be more of myself within the black community, actually Iām also autistic and there is not a very good understanding of autism within the black community. So I still actually within that community have to mask as well. So thereās no setting where Melissa can be Melissa, and so because of that Iāve never had a clear outline of who I am, and itās not until I received my diagnosis that I started to actively figure out who I was. And so thatās something I actively work on with my children so that they donāt get into their 40s and have no concept of who they are, and so that their health is better, because mineās crap.Ā
JAMIEĀ -The development of a cohesive identity requires an environment that is identity supporting.Ā
MELISSA -Yes.
JAMIEĀ -And even in just, you know, kind of standard autism circles this can be a huge problem where, so you have parents who are not particularly understanding who are pushing somebody to be as normal as possible, and in turn donāt give them a safe place at home to be themselves. It sounds very familiar but just with a different angle. And of course much more intense because itās everywhere and all the time.Ā
[Jingle: 1800 Seconds on Autism. With Robyn Steward and Jamie Knight]
EMMA -Why is autism less well understood in the black community?
MELISSA -Ā I think thereās not big enough investment to educate the community about it. I think again, with the NHS, with statutory services weāre an afterthought, weāre classed as hard to reach and so nothingās developed culturally appropriately to educate us about autism. So Iāll never blame my black community for it, I think sometimes people want to say, āOh well, theyāre hard to reach,ā and they just donāt understand it and itās because of religion reasons and this and that, but actually we donāt have the money, we donāt have the tools to do it. Give us the funding and then give us the space to educate the community.Ā So yeah, I have to mask more there because I think Eurocentric thinking is very I, whereas Iāve always been brought up to say we, so I try to think collectively. So I think thereās certain behaviours and certain attitudes within the community where I want to be pleasing to my community. I want to represent my community and so I think thereās a lot more pressure on the, although I donāt like to use BAME or BME, but thereās more pressure on the BAME communities to be respectful and strive, you know, do better than their parents did. And so you do mask what youāre struggling with because you want to make your family proud.Ā
ROBYN -Ā How could diagnostic services be more culturally sensitive? Like you say that there are people who feel that they have to mask to make their family proud, but also they might benefit from a diagnosis. So how could services be more culturally sensitive?
MELISSA -I think language. I mean, language is important. Representationās important. You know, if youāre going in a room with your black child to be diagnosed and youāre just surrounded by a sea of white people I think youāre a bit more hesitant to talk about difficulties that theyāre displaying. Thereās a mistrust of healthcare because of a history of things that have been done to us at the hands of white doctors and nurses. Weāve got centuries of evidence of that. Thereās also just a prejudice within schools. You know, if my childās acting a certain way the teacherās more likely to see it as a behaviour issue instead of a disability, purely because itās a black child. So I think there needs to be a lot of bias training for people who are in positions of power that will be writing documents to diagnose children. Thereās just so much that needs to change and I really donāt honestly know where to start.
Emma -Yes, itās so huge and complex.
MELISSA -Itās so huge, but I think we should be doing so much more better than we are in the UK.
ROBYN -Yes. Melissa, could you give us some examples about how non-white people have maybe been mistreated by medical professionals in the past?
MELISSA -Iām writing a chapter at the minute and talking about some examples in the UK and in the US about things that have happened at the hands of healthcare. And one of the things at the minute is, when you think about skin cancer I think the examples that they use to learn about skin cancer, itās on white skin, so when theyāre learning theyāre not learning about what skin cancer would look like on a black personās skin, which means itās missed until itās too late.
JAMIEĀ -Do you know about the NFL one?
MELISSA -No?
JAMIEĀ -Ā So the NFL, which is National Football League in the US I think, they have a thing about head injuries and about concussions where they use an IQ test, and if your IQ drops by a certain amount youāre liable for compensation. And they had what they called the racial modifier, which was the assumption that all black people started with an IQ 20 points lower. It was built into the test. So itās paid out to almost no black people at all, because itās been built into the test, biased from the start with this assumption. And that was a couple of months ago that was changed. It came to light. So itāsā¦ Iām not quite sure what to say, right? Iām trying not to cry, which is one thing. Iāve just recently had some medical trauma, so you know, itās a little bit current for me right now.Ā
EMMA -Yeah.
[Jingle: Email stim@bbc.co.uk]
EMMA -What has masking done to you? Youāve mentioned a couple of times that your body has not done well out of it.
MELISSA -My first job was in Meadowhall where thereās no natural light, so I worked under fluorescent lights for two years. I had raindrop psoriasis. Iāve had depression. I was diagnosed with severe prolonged depression at 18. I was diagnosed with chronic fatigue syndrome, I think itās about nine years ago now, I had to leave my post in the Civil Service, because Iād come home and my body would be wrecked. Iād crawl up the stairs, I couldnāt even walk. And understanding what I know now I was justā¦Ā I mean, I love Marvel movies and superhero movies and if you think about that superhero who puts like a shield, like a protective dome shield over stuff, I think my body was just trying to put a shield around me for so long and it just couldnāt cope anymore. But as a parent who is autistic, weāre struggling with our issues, our own metaphorical baggage as well as trying to juggle parenting and to find that balance. And I think in pictures, and my life is very much spinning, what feels like lots of plates. And then it feels like thereās also a fire in the corner of the room that I need to focus on and try to put out as well.Ā And so that, trying to juggle and find balance then causes me to implode a lot, so I do have a lot of meltdowns that I feel really embarrassed about afterwards and have to apologise to my children about. Words havenāt been created to explain how much I love my children, and itās the biggest insult when people feel or make assumptions that, because Iām autistic I canāt have empathy and love, if anything I love too deeply, I love too hard, and I have too much empathy.Ā
JAMIEĀ -One of the things that weāve seen, particularly in the US, is about how young black people can get a really rough time from authorities and be misinterpreted. You have an autistic son, do you worry about him when heās out and about?
MELISSA -Absolutely, and heās very rarely out and about on his own. So my fear as a parent is holding him back, and Iām really aware of that, and itās a juxtaposition Iām at where Iām totally against ABA and behaviour modification, but then thereās a part of me trying to teach my child to act, quote unquote, ātypicalā you know? And I want him to be exactly as he is, because I love him unconditionally but Iām also really, really scared of him out there in the world. And so Iām having to fight the urge to try and teach him to be normal so that he will go under the radar.
ROBYN -Just so you know, ABA stands for Applied Behavioural Analysis. Itās a way of educating autistic people to act like theyāre non autistic, but it can be quite harmful for autistic people and there are other ways of supporting autistic people, including things like looking at their environment. Well, thatās my take on ABA anyway.Ā
EMMA -What would youā¦? Not intentionally and out of love, what would you be suggesting that he may not want to do or act like?
MELISSA -Itās stimming. I have masked for so long my body is wrecked because of it, so I do not want my childrenās bodies or minds wrecked, I want them to lead happy, healthy lives, but Iām trying to figure out how I can stop him stimming in public so that he doesnāt draw attention to himself and then end up being harmed by the people around him or being arrested when he runs when heās questioned or cornered. And so yeah, I catastrophise a lot, but Iām so, so worried, and heās going to be starting college soon and I really donāt know how Iām going to cope with that, because he wonāt be in the integrated resource anymore at school which was a safe environment for him.Ā You know, heās going to be off at college with lots of strangers around him who have no understanding of autism. And so, as a parent I feel so conflicted because Iām surrounded by lots of white parents who just let their children be, and I have a lot of resentment sometimes towards them, and an envy because I wish my child could act like that in public. I wish that as a parent I could just say, āWell, you know, let them take off the mask and be exactly who they are,ā but I canāt because I have to look at the bigger picture. And before people see that my sonās autistic or may have a disability they will always see his race first, and so I have to look at his isms and try and find a safe space and time for him to do that so that when heās in public he can be safe around white people.Ā
JAMIEĀ -I donāt have a good answer for you here, but Iām the same, itās why I donāt go out in public much because I canāt not stim. And when I stim I get attention. One of the stims that I developed during lockdown was rubbing my hand down the side of shelves in a supermarket.Ā
MELISSA -Okay.
JAMIEĀ -I didnāt even know I was doing it. And Iād go click, click, click, click. And I kept getting store detectives come up behind me because theyād think that I was trying to steal stuff. And I was completely unaware of this until one day I was likeā¦ Itās really weird, this guy in the same coat always follows me around B&M and I was like, oh wait, Iām attracting the wrong attention. So yeah, again itās a different lens, itās a different intensity. As you say, the judgement is made on the colour of his skin before he even gets to the point that I get to, but I could totally see how some of the things that I do and weāll give him the benefit of the doubt, he wouldnāt.Ā
ROBYN -Thank you, Melissa. Bye-bye.
JAMIEĀ -Yes, itās been great, thank you.
MELISSA -Thank you very much. Take care. Bye.
[Music]
JAMIEĀ -Ā Hey Emma. You told me to tell you when I was done. I am absolutely cooked and my pain levels are through the roof. I need to stop.Ā
[Jingle: 1800 Seconds on Autism. With Robyn Steward and Jamie Knight]
EMMA -Do you know, Robyn, itās a real shame that in the last episode of this current series Jamieās had to leave the recording because unfortunately his pain levels have got too high and heās not been able to continue.Ā
ROBYN -It is a shame, but on the positive side itās good that he was able to tell us that and that he was able to do what his body needs him to do.Ā
EMMA -Exactly.Ā
ROBYN -Weāre heading towards the end of this series, and straight away weāve got another guest whoās joined us. Hello, Daisy.
DAISY -Hello, Robyn.
ROBYN -Daisy sent us a very detailed email about disruption and how this very podcast helped her cope during a particular incident. Daisy, could you tell us about when the workmen came to you?
DAISY -I can indeed. Yes, so I had a contractor booked on this particular day and Iād been told beforehand that he was going to be coming between ten and two and he was going to be fixing my window frames. And I knew that was very important because my window frames were falling apart and they were letting lots of cold air in. And Iād planned the day so thatā¦ He wasnāt coming until ten oāclock, Iād planned the day to go for a run because I like my runs, it lets out lots of excess energy and helps me out for the day. Iād then wash up and Iād go for a shower and Iād all be ready for ten oāclock. And as I ran towards the house it was quarter to nine and there was a van outside and I realised what had happened. Thereās a man stood on my garden and heās the contractor and Iām in my running clothes and I havenāt had my shower and I havenāt done my planned washing up and now I need to be polite to someone in my home. So yes, as you can imagine that made me feel really, really uncomfortable.Ā
ROBYN -Yeah, I mean itās very overwhelming isnāt it?Ā
DAISY -Yeah. I think the thing I found most difficult was theyāre in your home, so my home is my safe space, itās me and Tigger and no one else comes in, apart from when we organise something orā¦ And even more so this year as well. So whether itās my bubble coming in or whether itās my family coming in itās usually quite organised and I know what to expect, but obviously this contractor is someone that I donāt know, that Iāve never met before and heās now coming into my safe space. So what I wanted to do at the time was scream at him and tell him to go away and get out of my home and that I didnāt want him there, but not only would my windows not get fixed, but the people that organised him being there are also the people that I work with. So I could understand that what I wanted to do initially was not what would help me in future life.
ROBYN -So what did you do to deal with the situation?
DAISY -Previously when I felt uncomfortable in certain situations I could never really work out why or what it was I didnāt like or what it was that didnāt make me feel good. I would just either use language I understood, like Iām having a panic attack or I feel uncomfortable, but I couldnāt quite put my finger on it. But the more I listened to your podcast and the things that you describe, Robyn, and the things that Jamieās used to describe as well, I can now pinpoint what it is thatās making me feel uncomfortable. And you guys have kind of made this wonderful, like break glass emergency pack.Ā
ROBYN -So whatās in your emergency break pack?
DAISY -So, on the day one was like, plan and organisation. So I went back to my diary, and I often joke that if ever I lose my diary I donāt think Iād ever make it into work or anywhere else, so on there Iād listed the things that had to happen that day, the things Iād like to happen, and then if I had spare time what I could fill them with. The next part of my plan was have a shower. How do I feel about this? I have got a lock on the door. Itās probably not a good idea to go into a shower when thereās a stranger in the house, but like this was my plan, so I decided, right, this is what my next step is. I knew that the next room he had to work in was the room with my clothes, so I went and got my clothes and packed that as well. So that was number one, like back to the plan; what still works, what doesnāt.Ā The other thing was warmth, comfort and heat. So I went and got my bobble hat and my fluffy hat. I got the cat, I put the electric heater on, I got my hot water bottle and I locked myself into the other bedroom that was like my comfort zone. I was like, okay whilst heās out there Iām in here. And then I used your podcast throughout the day, so whilst he was in as well every time I kind of achieved something, so right, Iād done the shower now, or Iād done the washing up now or I made polite small talk to the contractor that went something like, āOh, you were early, I wasnāt expecting you until ten.ā There we go. Polite small talk. Done. Then I could listen to another bit of your podcast, and it basically just got me through, these little steps being like, oh hereās another voice I recognise again, Iāll just lock myself in the room and put that on.
ROBYN -Ah.Ā
EMMA -Ā That makes me so happy.
DAISY -And then for the contractor, at the time I noted to him, I told him, āYouāre earlier than expected,ā and he said something along the lines of, āOh, I had another job so I just thought it would be easier ifā¦ā So he thinks it was faster for him and it was more suitable for him, but actually it affected me so much that I was still feeling the negative consequences three days later. So the second time round, so I had a contractor in, I think it was the day before yesterdayā¦? I asked them for the entire period of time that the work people could turn up, so whatās the very earliest this person could turn up and whatās the very latest. So instead of having a ten till two timeslot I was given an eight till five timeslot. Now, usually I recognise that other people might not like the longer timeslot but it meant I was prepared from the moment they could physically turn up to not try and fill my day with anything else.Ā
EMMA -Can I ask what it sort of physically feels like when somethingā¦? What happens in your body and your head when something like a contractor or something else happens?
ROBYN -When disruption happens, for me I feel like a lot of whatever was inside of me weighting me has gone and I become very sensitive. A bit like a wound. You know like, obviously your skin protects you but if you, like, fall over, for example, and you scrape your knee, when you touch where the blood is it hurts because layers of skin have been taken off. Your body isnāt designed for you to be touching that layer of skin thatās still there because thereās normally several layers on top of it and so it really hurts. And I suppose it feels like that, that it makes me very sensitive to everything else and it can also make my brain slow down and everything is a bit scrambled. A bit like, you know, Emma, sometimes when you talk to people over the internet and they sound like theyāre an alien or something and you only hear little bits of what theyāre saying?
EMMA -Hmm-hmm.
ROBYN -Itās like that. Although Iām hearing it normally my ability to process is drastically reduced and I canāt think, I canāt access all my brain functions properly.Ā
EMMA -Yeah. Wow. And Daisy, does that sound familiar?
DAISY -Oh my gosh. All the way through this podcast every time Robyn says something or Jamie describes something, the amount of times Iāve been like, thatās all the words Iāve been trying to say for years and thatās perfect. Iād also like to say thank you to you because when I have an uncomfortable feeling or a really happy feeling Iāve had to shake out of the energy, I need to get my excess energy out like Doctor Who when they regenerate and all the light comes of their hands. And Robyn, when you described flapping I could not feel more happy that thatās exactly what I do. Before I go back to work now Iām going to flap all the excess energy out because thatās exactly the description.
ROBYN -Oh yes. Iām doing some happy flapping. Soās Henry.Ā
DAISY -Good. Thank you, Henry.
ROBYN -Thatās it for this episode, and this series of 1800 Seconds on Autism. Thank you so much for letting us into your earphones. Weāve had so many amazing messages to our email address, stim@bbc.co.uk. Thatās spelt S-T-I-M @bbc.co.uk. And weāve only been able to read out a tiny percentage of them on the podcast.Ā
Thanks to everyone who has been in touch. We do read them all. Itās been our pleasure to entertain and support you in such unsettling times.Ā
And if youāre hearing 1800 Seconds on Autism for the first time there are 23 more episodes on the feed for you to binge on. We know that some listeners have heard all episodes multiple times, or have played their favourite ones over and over. Or both. That makes us very happy. Keep yourselves subscribed to the podcast though, you never know when we might drop a random episode. In the meantime, if youāre a fan of the show and want more please email us and weāll pass it on to the bosses here. Bye-bye, and bye-bye from Jamie and Lion.Ā
[Jingle: That was 1800 Seconds on Autism]
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1800 Seconds on Autism
The podcast that makes you think about how you think.