Joanne Lockwoodhost
Hello, everyone. My name is Joanne Lockwood and I am your host for theInclusion Bites podcast. In this series, I will be interviewing anumber of amazing people and simply having a conversation around the subject ofinclusion, belonging and generally making the world a better place foreveryone to thrive in. If you'd like to join me in the future, then pleasedo drop me a line to jo.Lockwood@seechangehappen.co.uk,That's S-E-E Change Happen dot Co dot UK.You'll be able to catch up with the previous shows on iTunes and Spotify andthe usual places. So plug in your headphones, grab adecaf and let's get going. Todayis episode 18 with the title an autisticparent's perspective of autism. And I have the absolutehonour and privilege to be joined by Laurie Morgan. I metLori online in a Facebook group for professional speakers, yet anothernetworking success for COVID lockdown on online networking.Laurie describes themselves as a speaker, trainer andauthor. I asked Laurie to describe their superpowerand they said they don't need one.So hello, Laurie. Welcome to the show.
Hello, Jo. Did I really say Ididn't need a superpower? It's incredible.I get told reminded of stuff that I'vesaid and I go like, that sounds really good. Did I actuallysay it? It's really good to be here today.It's fantastic. After allthe problems that we've had, the issues connecting all of thatstopped starting to finally sit downtogether with the coffee in one hand, the water in theother and the microphone right in front of us. How are youtoday? I'm good,
Joanne Lockwoodhost
yeah, I'm having a good week. This is even better, as yousay. Finally, after much toing and froing and online diariesand trying to get this coordinated, we finally made it. So I'm reallypleased that we can sit down and have our coffee together and achat. So why do we needto understand an autistic parent's perspective ofautism? Right? In
April, I had a book publishedcalled travelling by train, the journey of anautistic mother. And since it'sbeen published, it's brought to mind something that I wasalready very aware of, that there isn't a lotof dialogue around about autisticpeople as parents. I had one or twopeople pick up on it, like little conversations thathappen in Facebook threads.One or two people have been confused and they've made commentslike, is the child autistic or is the motherautistic? And it's aboth because peopleget confused. There's so much about I'm an autismparent, I'm an autism dad, I'm an autism mum.And what that means is thatsomebody is saying that I'm the parent ofan autistic child. I mean, we mightjokingly call them autism mamas. And itindicates more of a type of personwho's kind of hanging their identity on that of theirchild. And there's a distinctdefinition. There's a big difference between being the parentof an autistic child and being the autistic parent ofthe child. And there's another difference being the autisticparent of an autistic child or children.So yes, I'm an autistic parentand grandparent. I have three adult children,two sons who were both diagnosed and a daughter who isnot. And Ihad an awful lot of people approaching methrough various social media channels telling me theirstories and their experiences of being anautistic person and being a parent. Now we canhave a lot of these chats in safe spacestalking to each other. This is autistic conversationhappening about our lives, our jobs, our children, ourstruggles, our joys, our traumasand all this kind of thing. Butthat's sitting on the couch of friendship in a safespace with people we trust, with other people that we knoware autistic, we know their parents and we kind ofjust get it. We're sitting within our own community.There does not seem to be an awful lotof dialogue about the autistic person as aparent. And it's everybody's rightto be able to have their own childrenand to raise their own families, whether they're children bybirth or their children by adoption.However we acquire our children, it's a basic humanright, it's actually a basic human need.And the reason why this came about so strongly is thatin the training that I deliver,I deliver autism training to variousprofessionals. I've spoken to parent groups, I've spokento parents of incoming students at the university Iused to work at. This is all in the realm ofautism world and all in the role of an autisticperson. And I still hearpeople saying that their child has beendiagnosed or however long ago they werediagnosed. And I was told my child wouldnever. And then we get a big shopping list of things that they'renever going to be able to achieve, they're never going to be able towork, they're never going to be able to live independently, they're never goingto form successful relationship, they're never going to be able to learn howto drive. They're never going to be daddy, daddy, daddy, dad.All of those things that human beingsexpect their children to be able to do. Now Isay in my training, that sets the bar of expectationvery low. If we do not expectour children to achieve this, why should we bother?So they're already disadvantaged and it'sa mistake that far too manyprofessional people make. Whatever realm ofprofessionalism that they're in is to say, no, yourchild is not going to achieve anything.It's signing them off beforetheir lives even really begun. And it makes me soangry. And as a parent, yes, we should beallowed to have children. They have an awful lot, thewhole parenting. It coversall sorts of other areas as well.It challenges autism myths.Apparently we get told it's a myth that welack empathy. It's a myth that we're unable toform relationships. It's a myth that we can meet otherpeople's needs and all this kind ofthing. If professionals are being taughtnegative stuff about autistic people, thenthey come into contact with anautistic parent, with an autisticchildren with an autistic child or autisticchildren, they're going to say, well, you're not capable ofraising this child. This child is the way they arebecause you are somehow deficient as a parent, whether that's aspoken dialogue or a written dialogue, or whether it's anunderlying negative belief against thatindividual person.And there needs to be more dialogue about autistic people asparents. Because if we see the potential of an autisticperson as a parent, there is no reason why this personcannot become a parent. If we deny themthat possibility, then that putsthat parent at risk. It putsthem at risk of having their children removed. It putsthem at risk of having unnecessary interference fromauthorities, from social services. Daddy, daddy,daddy, dad. And I have come across that a lot since my bookwas published. And there does need to be a wider dialogueof the autistic person as a parent.
Joanne Lockwoodhost
That's fascinating because I think I'vebeen subjected to thatstereotypical view of an autistic personbecause I work a lot with recruiters recruitment process, and there'sthis push on autism awareness. Andthe common thing that comes out is that autistic people, asyou say, don't have empathy or they are not ableto speak in any kind of metaphorsor vague terms. If you say, how are you feeling? That's not agood question. That's why I've been told that's not a good question to ask anautistic person, or if you say to somebody, tell me about yourlife, that's, again, a bad question for an autistic person, because it needs to bevery specific about what I'm trying to do. This is how I've been taughtto communicate effectively with autistic people. And what you're saying is,as I've heard of other people say, is if you meet one autistic person, you'vemet one autistic person. Every autistic person is different. Everyone has a differentlayer of need in the same that I'm an individual, you're anindividual, the world are individuals. We all have to have thisperson centric view of who we are, don't we? And I found itvery fascinating that because I'm 56years old, only 56. And when I was young, we didn'thave autistic people. We did, butwe didn't call them autistic, we didn't have people with Asperger's, we had all these.We had difficult children, we had children who were unteachable,we had the bottom of the classcorner where children were effectively written off. And it's onlyreally been in the last, what, 1520 years, where we've started tounderstand about different learning styles, different communication styles.And some of those children who probably in my day werewritten off, simply had either a learning disabilityor were autistic or had adhd, had attentiondeficits and they received no help, whereas at least childrentoday are getting their help. So is it because the oldergeneration see autism as a young personthing, not an old person thing? Which is why you probably don't get the supportor understanding that you're looking for.
It's a difficult one, isn't it? Because while progress has beenmade, there's still an awful long wayto go. I'm a little bit older thanyou, but we were brought up in the samekind of, like, era. I'm59, so I related towhat you said about we didn't have autistic children in the classroom. We did,but we didn't know they wereautistic. I didn't get diagnosed till I was 44 andit was massively life changing. Iwas doing some background research on behalfof my youngest son who had to move schools.I don't want to go off on too much of a tangent with that,but it was after doing some research that Irecognised on behalf of him that I recognised the traits inme. So, yeah, it was massively, massively life changing,but there's still an awful long way to go.A lot of differences have been noted for a long while because as youwere talking, I remembered different things. Andyou've got to remember that this is language that was used in the1960s, 1970s, because children, forinstance, with other differences like dyslexia, theywere recognised. They were recognised asdyslexic. But to use words that were commonat the time, please hear that. I've said thatthey were seen as a little bit backwardor a bit slow or somehowdeficient, but thankfully this had been ahell of a lot of progress on that. So being dyslexicnow does not have the same tag attached toit as being dyslexic did 50 years ago.So maybe in another 30 or 40 years time,and hopefully it isn't going to be that long, thatautism will be see in anothermore positive light because you said something thatwe hear an awful lot. I can hardly ever talkabout autism to somebody new who does not quote,if you've met one autistic person, you've met one autisticperson. It's one of the mostcommon things that gets grown up about.And we would not say that inany other context. We would not say, ifyou have met one Hindu, you havemet one Hindu. If you have met one black person,you have met one black person. If you have met onewoman, you have met one woman. If you have met one man, you have metone man. We just don't hear it in any othercontext apart from autism. Whyis it only in the realm of autism that we hearthat? And when on the other hand, the same people will say,they will follow it up the subtitle to ifyou have met one person with autism, you have met oneperson with autism. The subtitle then goesinto we're all individual, we're alldifferent. And that's usually said in that kind ofspecial voice that we usually reserve to somebodylooking at a basket of kittens.If you've met person, youmet one autistic person. We're all individual,we're all unique in our own special way. Whata cute basket of kittens.And in some context,and too many contexts that happen, andwhen you're on the receiving end of that and it'sa professional, do you know that is like thegarage doors slamming. Oh,by the way, autistic people don't use metaphor, so just ignorethe fact that I said it's like a garage door slammingbecause I clearly don't know what thatmetaphor might conjure up with anybody.
Joanne Lockwoodhost
Maybe you're not autistic enough, then. Do you have that problem as well?
No, I might only be a littlebit autistic. No. Hang on a second. Hang on a second. Butaren't we all a little bit autistic? Aren't weall on the spectrum somewhere? And thatleads into that one, doesn't it? Actually, no.And this is something that I bring up in my, I do this Mythbusterquiz, and this mythbuster quiz is compiledover questions that autistic people want to askor points they want to raise. And lack ofempathy is one of them. That's the top. Well, youcan hear they all pop out going. Youcan almost see people popping on socialmedia going like, tell them about the lack of empathy. Tell themabout the lack of empathy. That is our number one. Drives us nuts.It's absolutely crazy. And the other one is, we've autistic.We are not people with autism. Andit's crazy. It's absolutely crazy. And we areso passionate about this stuff, whethernot everybody can hop up and down in a chair and wave their armsabout the way I do, the way that Iam, but this kind ofthing matters. No. When I bringup the stuff about everybody being a littlebit autistic and everybody being on the spectrum somewhere. Thefirst time I heard that, I was delivering aworkshop to 95 children's careworkers, and that came up andI asked the question,so who thinks everybody's a little bit autistic?And this is the question I put to 95children's care workers. Nearly everyhand went up. Probably about 90 hands wentup and that I had that feeling. Icould feel my face went cold.I could barely breathe for that moment,I was utterly speechless. Thehorror that just filled me was incredible.I thought, are you really being taughtthis? And justsomewhere, somewhere out ofgoodness knows where, I heard my voice. I heardthis voice from inside mesaying, keep your hands raised.So which little bit of autisticare you? If you can tell me, please keep yourhand raised. Not one hand stayedraised because it's one of those things that people aretaught and they take on board without actuallyquestioning it. And there's onlyever been one person who's argued with mein a training session, and she was a consultantpsychiatrist. Now, that's nothing to do with, ifyou've met one consultant psychiatrist, you've met oneconsultant psychiatrist. Now, I've met a lot, andmost of them are absolutely brilliant, but this particular individualwanted to argue with me. Sosometimes we just have to draw a line under it and say,okay, fine, but until you can tell me which littlebit of autistic you actually are, because youhaven't answered my question, then arewe going to have to leave it there and move on? And then I moveon really quickly. And moving on really quickly was anart I learned when I was a taxi driver. That's another story.Seriously. This is one of my funny little anecdotes.
Joanne Lockwoodhost
This is like getting stuck into a Monty python sketch without realising it. This isabsolutely fantastic. Shall I
tell you how I learned to move on really quickly?I did spend a period of time, about three or four years,being a taxi driver. And the reason I got to being a taxi driverwas because out of an unfortunate circumstance,it was a really horribly, terribly stressful andtragic point in my life. And I'm actually making it sound like a joke, andit wasn't. I was subject to childcare proceedings. And my two older children hadn'tlived with me from before his birth. They were his halfsiblings. And he had an injury, anon accidental injury, and I couldn't provethat I hadn't done it. And he was infoster care and I used to see him.Sorry, I've got a dog running around underneath.He was in foster care and I used to see him on Monday and Tuesdayand Thursday and Friday. So I needed a job that was duringthe nighttime or at weekends. And I got a job as a taxidriver. And I thought, social services are going to think, this is really great, deadpositive, all that kind of thing. But no, they said I was putting myself atrisk. Now, had I have got a job during the day, they would havesaid, she's putting career before child. So it's notlike I couldn't win. It was just completelydreadful. But I got a job as a taxi driver andseriously, and I talk about it in my book, andit saved my sanity. I did tworeally positive things in that awful time. And one wasget the job as a taxi driver and the other one was to start dancing.And I used to find out that Igot asked out an awful lot to startoff with. Nearly every shift I did, I was getting asked outlike four or five times a week. I'd get asked out ondates and I kind of started to get a little bitannoying. I wasn't interested in relationships at the time. I wantedto focus on what really mattered. And relationshipsweren't one of them. And I figured outthat people ask this question,people. It was usually blokes.And the quite common question went along the lines of, doesn't your husband mindyou doing this? Or doesn't your boyfriend mind you doing this? And Iused to say, well, I'm sort of like, haven't got a husband or, no, I'mnot in a relationship. And then I'd get asked out.And that's when I realised that they weren't really asking whethermy husband minded or my boyfriend minded. They were reallyasking, are you single now? I wasanswering the question that they asked and not the questionthat they meant. And this is a completelyautism thing. You ask me the question, you ask me if Iwant a cup of coffee, I'll say yes or no. If you're askingme if I want a cup of coffee because you think itmeans you're inviting me in your housefor a fumble on the sofa to Matt Monroe songs orthing, then it's not going, you asked me for a coffee. You didn'tsay, know, take your clothes off, lord, oranything like that. And I realised that that was what the questionmeant. So I learned to move on really quickly and say,like, well, actually, I don't have one. And then Ichange the subject quick. And the invitationsto quiet nights in just dried up, which is quite arelief. So that's how I learned to move onfrom an awkward question. And it does work well ina professional setting.
Joanne Lockwoodhost
Yeah, I think you're right. When we're training, when we're standing in front ofpeople, it's quite easy to get sucked into a black hole if you're not careful.Yes. Someone's going to have a question or they'll have a perspective and you getdragged into. As you say, it's very important to be able to have an escaperoute out of a conversation, isn't it?
Yes, it is.It's being able to look atthat distraction over their shoulder and thatnice shiny ball or that lovely view or something likethat, and then move on to something else. But we need to move onnow. We're really short of time. So x, Y and z, you're welcometo speak to me afterwards. So you're also
Joanne Lockwoodhost
going to destroy the myth that you're not a mathematical genius, then? Is that anothermyth that you try and bust?
Yes, that's on the quiz sheet as well. We're notall good at maths. It's actually really common.Some people are really genius with numbersand some aren't.I'm not great. It was one of those painareas when I was growing up, because my dad was a genius,literally, and he was literallya mathematical genius and Iwasn't. I've got dyscalculia, which is the numericalequivalent of dyslexia, and I've gotno capacity to retain numbers or information andstuff like that and working out calculations, and itdoes affect a bigger area of your life, apparently, it affects yourability to organise yourself, et cetera, et cetera as well.It's not just the numbers, it's the other things. But I'mnot great with numbersand it's not just me, because when Istand in a training room or in front of an audience, Iknow that I'm representing the autistic communityand I say, yes, I'm anindividual, very unique,but I'm not unique, because if Isay I'm really dreadfully poor at something,I know I'm not going to be the only one, because I know I belongto a community where there will be other people who experiencethe exact same kind of difficulty as well. So Ifeel that I can honourthe autistic communityby speaking, by being amouthpiece for us, becauseI need to put us across in a positive light.If I stand in front of an audience and I seemarticulate and I seem capable, that's busting a myth assoon as I walk in the room, the fact that I open mymouth and I can string a sentence together whenpeople have only really come into contact withautistic people in the context of learning disability,that's something else that people confuse as well. Autismis not a learning disability,and I think a higher proportion ofus don't have learning disabilities than actually dohave. I think the printed statistics,about 48% of autistic people have a learningdisability. But I actually challenge thatbecause there are going to beundiagnosed people out therewho meet the criteria for genius, or average orabove average, who they've never had their autismdiagnosed and they clearly don't fallinto learning disabled, and they won'tappear in statistics any more than they'll appear instatistics of employmentfigures, for instance, or school exclusionfigures, anything like that. If you're not diagnosed, then you're notgoing to appear in statistics. It well, then look atautism.
Joanne Lockwoodhost
People hear these terms, hear the word autism or autistic,they hear of Asperger's. Are theselinked or separate? I mean, there are different conditions ordifferent ways people exhibit autismto certain degrees or strengths. Is that right? Is Asperger's similar toautism?
Actually, I really am so thanks loads.Very much appreciated. I'm currentlywaiting to hear about the tribunal for mypersonal independence payment, which I gotturned down for. They decided that I hadto go from DLA to Pip and I hadn't gotassessed. And like most people, you get turned down and they hope you're going togo away and leave it, but you appeal. I'm going through theprocess. And in my PIPinterview, I had this argument with the assessorbecause she said, it says, here you have autism andAsperger's. And I just. No,it's the same. It'sthe same. Asperger's andautism are usedinterchangeably. Asperger's is aform of autism. It's not used somuch now. I tend to just use autism. Andeven on the letter I got from the court, it said,I got autism and Asperger's.You don't have both. It's one. It's just onecondition. They tend not to diagnose Asperger's nowbecause it comes under the umbrella of autism spectrumdisorder or autism spectrum condition, andthere's no difference, because if you look at that, you start looking atfunctioning labels all over again. They used tosay Asperger's is a high functioning form ofautism, Asperger's is amild form of autism, but they're still saying formof. It'sstill the same thing. And it'sconfusing because one of those things that happens iswhen we're looking at functioning labels, is thatsevere autism,high functioning, low functioning, severe, mild, allthis thing to meet the diagnosticcriteria, you go through all of the things thatyou have difficulties in all the areas that areproblematic. So basically, you have to fit all ofthis negative criteria to get your diagnosis.Now, when you go and look for support, they're notinterested in what you can't do, they're interested in what you cando. So to fulfil the diagnosticcriteria, it might be, look, I'm absolutelyunsafe to live on my own, for instance, andthen to get support and help, and they'llsay, yes, but you live on your own.And then they'll see that as it's completelyskewed, it's completely wrong, it's to look forsupport. They'll dismiss you as needing supportbecause of everything that you can do. Now,let's just say at my end, when you'reautistic and you don't have a learning disability or what people mightcall high functioning or whatever, and it's all arguableand it's terrible and it's offensive toautistic people. So if you're classed as severelyautistic, then what happens is that they don'tactually look at the things that you're capable of achievingand they set the bar of achievement incredibly low.So you're disadvantaged by the functioning labels that wesee, especially when it comes down toliving your life like being a parent, being employed, livingindependently or getting support, just beingseen as a regular human being.
Joanne Lockwoodhost
You've been autistic all your life, so youcan't know what it's like not to be autistic or not to be you. Butcan you imagine some of the additional challenges you've had asa parent with children? Obviously, to bea parent you have to have children, but to be a parent of bothautistic children and non autistic children that you've had tocope with that maybe other parents don't.
My daughter isn't diagnosed and she doesn't want to go for anassessment. So in theory, I don't know whetherI've got a child who isn't autistic.So I've got a bit of a question mark overthat one. I think, generally speaking,yeah, we kind of think that she is, butthat's fine.I've never parented any other children apart from mineeither, so it's a kind of tricky one.I do know that with my eldestson, I hadn't got very much of an idea,like, what the hell am I doing here? I've got this smallbaby,okay, what do I do with this? It's likegetting that really useful Christmas present. And you lookat it, you look across at the person who's giving it you and they're justliterally bursting with excitement. They're not literally, let'ssay metaphorically bursting with excitement. And they're lookingat you going like, isn't this the best present you everhad? And you look down at it and go like, what am Isupposed to do with this? And that was what itwas like having a new baby. SoI just kind of grew with him andI tuned into him. I knew what worked. Iknew this behaviour meant one thing and thatbehaviour meant something else. You knew that if he startedto get raggy and irritable, he was probably hungry.He wouldn't come and say, mummy, I'm hungry. You know, byhis behaviour, he was hungry.You learn these things over a period of time.He's kind of like in the way he's under your feetan awful lot. Just give him something todo and he's happy. He didn't necessarilywant me to play with him. He just wantedgiving a job to do. So you'd set him up with a task. Get allthe sticky box, stick all the boxes, the glue out, the paint out andgive him some cardboard box modelling to make. He'd be happy,or you're making bread, just wrap a tea towel round histummy, wash his hands, stand him on a chair,put him at the dining table with a lump of dough, show him howto do it, leave him with it, happy as you like. And you just gotto know. So thatwas my experience of having his childand we had a few issues when he startedschool. He was one of those kids who crawled. Hecrawled around on the floor, under the table, he'd roll aroundon the cloak room floor, this kind of thing. And hedisplayed the sort of behaviour that he displayed at home and I knewhow to deal with it. But I didn't go particularly down well,particularly at school. I got called into the headmistress's office an awfullot. And I'd say, well, I've always done an awful lotwith him because when this happens, I do that, it's causeand effect. He does this, I do that, everybody's happy.And she said to me, perhaps you've done too much with him, but if Iignore him, he's just an absolute pest. Sothat was how I related to my child. I did not have a good example.My parents were both dreadful. I wasabused an awful lot, emotionally andverbally, occasionallyphysically. I was hit. Mymom would lose a temper and she'd just launch into me and thump me inthe head and that kind of thing.So I didn't really have an awful lot to follow. I just learnedfrom my childrenand that was my experience of parenting fromthat particular angle. And now I've got different experiencesover the years and I haven't stopped being a parent. My youngest one was nearly27 and still learning new thingsbecause his life experience changes. So stuffcrops up when they're adult that isn't going to crop up whenthey're five, for instance.The things that I found difficult were things likeplayground conversations with other parents,going to play groups and stuff like that, or toddlergroups where you're mixing and meeting other parents. AndI didn't know what to do.I didn't know how to have conversations, didn't know how tochat. I felt awkward.Sometimes I couldn't speak, I'd stammer an awfullot because I couldn't get my words out, whichis sort of thing that generally happens when I'mfeeling incredibly awkward and in a situation that'sdifficult for me. And I didn't really evermake lots of friendsbecause I didn't really know how to.
Joanne Lockwoodhost
When we were chatting earlier, you were talking about motorways and countrylanes, which I thought was a beautiful analogy. And asyou've got older, you've kind of also questionedyour own sense of self, your identity, your gender,et cetera, et cetera. And as you've evolved your ownsort of identity, you've becomeless able to cope with overload, haven't you? I think that's what youwere saying. You get too much information sometimes.
I don't know, about being less able. It's more aware thatsomebody's not tolerating it. It's notnecessarily coping. I think asmy self awareness has grow, I'm less inclined totolerate what I call country lanetalking. And, yes, we were talking earlierabout some of the issues that I have,and quite often I have difficultyrelating to women because I know it's ageneralisation. It is very much a generalisation.So if any women are listening and they're beingoffended and they're saying, yes, but I'm not like that. Well,I'm acknowledging that because you've metwoman. One woman, you've met one woman.You'Ve met one woman. It doesn't mean to say you know them all,but this is a common experience that I found,and, yes, I am generally generalising an awful lot,is that women tend to give you far more information thanyou need it. They'll waffle, they'll say25 words where one will do, andit's hard to keep up, it's hard to follow,it's hard to know, what are you actuallyasking? What information are you actually givingme? And it's sometimes likepeople talk a lot and communicate absolutely nothing.There's one female lecturer, when I was atdiversity, I just couldn't bear going to her lectures.I took literally what the course leaders said in theintro before we started uni, and I didn't go to uni till I was44, so I was alreadytheoretically grown up. But I can remember sitting in thestreet. I was going to be meeting mymentor. I remember sitting in a publicstreet in Sheffield, outside thelibrary, and it was by the side of one of thedual carriageways that runs through the middle of Sheffield. And I just satthere in the side of the street with my back against the libraryball crying. And it's the prospect of goinginto this woman's lecture because she just talked talk.I've got no idea what she's trying to say. Andthat's an extreme example of something that I find reallycommon. And it's what I call country laneconversation because it goes all over the placeand it takes ages to get to where you're going now.That's very common in people who aren't autistic.Autistic people tend to be more motorway thinkers andmotorway talkers. So you don't get the waffle. Youget very direct answers, you get very direct instructionsand it's so easy to follow.Occasionally you might stop at the servicesbecause you need a bit of a break. But generallyspeaking, it's a far more efficient way of communicatinginformation and it's ametaphor that autistic people aren'tsupposed to know very much about.We're going to keep coming back to this because it's just pokinga bit. It's just poking a bit of fun at stuff, butin a light hearted way. I hope anybody listening is actually getting a bitof a message there. Yeah, that
Joanne Lockwoodhost
autistic people. You've met one autistic person, you've met one autisticperson. I learned that's a really crass thing to say. Yeah, but
you're saying it more than I am. I know it's a
Joanne Lockwoodhost
crass thing to say. Couldn't we, to put all. I know, Christmas
cracker instead of a joke, is it sort of a Christmas crackerautism myth and one of them couldit? Yeah. I think many of the autistic
Joanne Lockwoodhost
people who train on autism use that phrase a lot and I thinktraining it is. Yeah. Ican't speak for every autistic trainer or every trainer who teaches autism,but I often hear that from people and I hear that about people withdisabilities and other characteristics. So I thinkit's a Muggle's way of describing people who area Muggle was assumed that they're normal and everybody else isn't.When you talk about people with different gender identities, different abilities,disabilities, we like to box people in, don't we? We like tocreate this sort of, like, stereotypical view of somebody sothat we can put them in a box. We can say, well, autistic people arelike this, trans people like this, disabled people like this, people who aredeaf are like this, and we like to have these little boxes. It makes itmuch easier to deal with people, doesn't it? And I think what we'redoing with autism is doing that. We're creating these boxes so we can put peoplein, so we can label people and say, right, that's an autistic person.We're going to treat them like a mathematician. They're not going to have anyempathy, they're not going to want to communicate. If you ask them a question, it'sgoing to be very direct and they're going to give you direct answers back andavoid eye contact. And that's kind of the rules. It's abit like having a gremlin, isn't it? You can't feed it after ten,you can't get it wet, and you can't give it bright light wherever the otherthings is. So we learn about people in these bigstereotypes. And I think what we're discovering here is thatwe can't be stereotyping people with autismbecause autistic people, because there is notypical person in the same way there's no typical other person.
Well, I think if you go back throughthe history of the study of autism, and I don't know whether you'vecome across the book called neurotribes by SteveSilberman, it's quiteheartbreaking reading the earlier chapters,and lightsdon't start to come on till quite a way intothe book, so it's really heartbreaking.But looking back at the original people who were studyingautism, they weren't even trainedpsychologists. It's absolutely. Theyset themselves up as. And they studied stuffand they brought papers out that anawful lot of understanding wassubsequently developed on. And they only looked at boys,they only studied boys. So for a very longwhile, and it's still the case today, it's much harderto diagnose girls or women because so much ofthe information that's out there is based around the study ofmales, or typically presentingmales, andit's very difficult. And the thing is that if you look atit from an autistic perspective,if the children in the study are not showing anyempathy from an autisticperspective, it might be because they don't understand whatthey're supposed to be doing in that particular task.They're too frightened to show any emotionwhatsoever. Because one of the myths is that we don'tshow emotions. If you're frightened,it's difficult to show any emotion. If you're frightened, it'sdifficult to take on board any information. Andchildren were being studied in laboratories underartificial circumstances. Now, if you're the type ofperson who finds those sort of conditionsincredibly difficult to operate under orthink inside, then you are going to present in a waythat isn't normal for you.So an awful lot of these diagnostic criteriawere set up based on artificialsituations. Now, if children were studied athome and studied in the natural environment, if they werewatched while they were in the playground or at the park, orin the classroom, or in the home, or in thesupermarket or walking to thesupermarket, you'd see a completely different picture.You'd see a completely different picture if you saw the way thechild interacted with their family pets, with theirsiblings, with their parents, in an environment that'sactually the one they're used to living in.And this is where a lot of this absolute rubbishstarts from, andthe things that we impose on people as well.
Joanne Lockwoodhost
So what can we do in the workplaceor even in society to change thecultural perception of autisticpeople? What can we learn? What can I learn fromtoday? We can be more motorway,
what job do you want doing? This person cando this job, so let them do the job. That isjust cutting out a hell of a load of rubbish.You're not employing somebody tomake friends, you're not employing somebodywho looks like they might be a laugh on a night out,you're not employing somebody who's great to have a watercooler conversation with. You are employingperson a to do job a. Person B to dojob b. Why do social skillsmatter very much inany job where it might not necessarily be relevant?In fact, how relevant is it in an awful lot of jobs? Ifyou're sayinga social worker visiting a family, you've got questions toask. Ask the questions.Ask the question that you want the answer to, not thequestion, and the person gives you the wrong answer because theydidn't guess the right answer.We can all learn to be a bit more direct. Some of that isactually part of british culture, and I'velearned that by mixing and meeting with peoplefrom other cultures. Some cultures are very much moredirect. No, if they think you're fat, they're going to say, man, youlook fat. And that's theway that culture operates. And that is quite aculture that you can relate to from an autistic perspective,because you think that person needs to shedsome pounds. But it's not necessarily the commentthat british people would make,but it's perfectly acceptable. Let's be directwith people. Let's sayit's the wholethat social interaction thing is a nightmare, because some thingswe don't say some things we do say, like, I was just saying what Iwas thinking. Well, sometimes it's not relevant. Itdoesn't matter. All you need to know, person a needs todo job a. Nothing else particularly matters. It doesn't matterhow old they are, it doesn't matter what colour they are, doesn't matter what sizethey are, it doesn't matter whether they preferif they're boys who like to sleep with boys orgirls who like to sleep with girls or they like to sleepwith both or. It doesn't matter. Doesn't matter howmany children they've got, doesn't matter whether they're married or not. No. Youneed person a to do Job a. There is too muchin the workplace is where you're taking on a personwho fits in with company culture, and a lot of that's basedon ageing, appearance.We were all in a young, dynamic team.You need a young tip. Focus on
Joanne Lockwoodhost
the task in hand and less about the social interactions. It's kind of theautistic view of efficiency, if youlike. Yeah. What job do you want doing? Show me.Sometimes when I'm concentrating, that's exactly what I need. I needjust head down, let me get on with it. Tell me what you need. Letme do it. And as you say, I think there's a lot of country linkconversations where you end up over talking about something, where you end up explaining ittoo much detail. And sometimes it's nice to say, okay, tell me what.Where are we going with this? Where we going? Tell me what you're after. Let'sget on with it. So I completely relate to that. Cashinto the chase, I think we call it the chase. We canflower things up, can't we often think howmuch money we could. Save if we weren't having meetings?
About having meetings, if weknew. Have you found strengths? Were, have you found
Joanne Lockwoodhost
lockdown? We got a person who's absolutely brilliant at this.
Let them get on with it.Management. Yeah. So have you found lockdown,
Joanne Lockwoodhost
then? So presumably, like the rest of thecountry, you're often now working from homeand spending more time at home. Is that more of a challenge for you, ordo you find that more relaxing because you'renot dealing with people's country lanes at themoment? Country lanes and motorways that.
I've been forced to be more isolated, in away. I've had a lot ofpersonal circumstances going on. How have I found lockdown? You'vegot highs, there are highs, there are lows.I got a one. She's16 month old granddaughtermissed her first birthday, missed the opportunity of seeingher in real life because of lockdown. My youngestson's partner had a baby during lockdown, and that was a highpoint. I've hada few inquiries about paid work, whichfreelance work, which is positive, but I've hadall this stuff that had to be postponed or put on hold,which has been difficult.I got to a point ofmonth six weeks ago where I was realising that I wasgetting a lot of anxiety, et cetera, et cetera,and I decided that I needed to do something about it. So I startedgarden projects. Now, I'm not one for gardening, I'mnot one for housework. I just often find it difficult toknow where to start. So with the garden, I started digging.I started chopping back a lot of stuff that had overgrownand started digging. And when I started digging, Isaw the next job coming along. Although if I clear this enough, withmy birthday approaching, which is the beginning of July,I can make this area big enough to pitch a tent in sothat my two older grandchildren can come over on mybirthday and we can camp in the garden and have a barbecue and all thissort of thing. And the idea started to grow. And this is howideas things develop with me. And sometimes itis the runaway train and I end up taking on more than Ican deal with. I was borrowing nextdoor's garden waste bin because theirs is pavedover just to put garden rubbish in. And I went around one day to seeif I could borrow it and they got this treasure chest, cardboard box, treasure chestin the garden on the front step with a postit notesaid, okay, can I have that yet? So of course I got hold ofthat. I'm going to fill it with stuff like chocolatemoney and various bits of shiny, sparkly,piratey looking stuff and bury it in the garden. So that meansI had to dig a big hole to bury it in the garden, which isfine because I don't have any lawn at the moment. I can dig upas much as I like. I can dig a World War I trench ifI want to. It's absolutely fine. So I had this crazyidea of burying this treasure chest and of course, bury the treasure chest.I had to make a sort of, like, clues so the childrencould run around the house from one clue to the next till they gotto x marks a spot. Now I got a literalx marks a spot because my littlegrandson, who's six, he likes looking atmaps and he was looking at a map one time andhe was looking for something that he called x marks the spot.Well, let's have a real life x marks the spot. So I crossed twotwigs over, covered it with a map, laid these clues out. I uncoveredthe map, found x marks a spot, and I stood there looking at it fora moment and Olivia said to Mickey, I think we're supposed todig. So we got soil flying everywhere. Itwas just an absolute total mess. By the end of the weekend, I think Icould have grown potatoes on my dining room floor, there was thatmuch soil everywhere. But they had a great time andthey have lots of fun when they come over. And I thinkthat's because I get down on their leveland I see life through their eyes and I thinkthey're going to love this.Is that showing empathy, looking at itthrough their eyes, thinking, they're going to love this, they're going to lovethe treasure chest, they're going to love the camping in the garden, andit's about designing things around what they are goingto absolutely love. And they enjoy coming over somuch. So that was a lockdownproject and it takes ages. It took hours to digthat hole and 30 seconds to dig the treasure chest up. But itdidn't matter. It's helping to keep me mentally well andhealthy and that matters. Thechildren are having fun while I'm looking after my mental health.
Joanne Lockwoodhost
Yeah, I agree completely. Well, you've written yourbook. Just remind the listeners about your book again. So thisbook you've written, what is it about? It's called travelling by train,
the journey of an autistic mother.It's by me, Lauren Morgan, and that's spelledL-A-U-R-I-E-M-O-R-G-E-N.It's published by Panama Press, it's availableon Amazon and other outlets throughBlackwells, through Warstones, directly throughme. I'm guessing that you may well put my contactdetails somewhere on your. I will do, yeah. So this book will be
Joanne Lockwoodhost
useful for parents who in the cells are autistic or people whowant to find out more about autismor is it a life biography? Right. It's
a fabulous question and well worth asking.It's not a book. It's not a book about friends, it'snot a book about autism, it's not a book aboutparenting. It is apersonal storythat's written from an autistic perspective.Through most of the book, it covers a twelve yearperiod. Some of the time init I go into more detail than others,so it slows down in pace, it picks up in paceand it raises questions that need to be raised.Did find myself in circumstances that Ididn't understand and I was responding tothe situation in ways that weren'texpected, and that went against meand I responded in ways that weren't expected because there's aprescription, especially when you're coming into contact withauthorities like the social services, and they'reexpecting an invisible tick boxto be ticked, and if you're not ticking the tickbox, it's wrong. And I wasn'tresponding in ways that they would have expected. So that wentagainst me. Now, the reason I didn't respond in ways they would haveexpected is because I took a lot of what they said quiteliterally. They didn't understandwhy an intelligent, articulate persondidn't understand what was happening. And that's because a lot ofit hadn't been specifically and explicitlylaid out to me. I'll give you an example that happensearly on in the book I was told that my son hadsustained a non accidental injury. And the first thoughtthat went through my head was if he was in hospital at the time,oh, he hasn't had an accident, so he must be ill. He'll get better.I can take him home. I had no ideathat non accidental meant deliberate,and it took me a long while to realisethat. And one of the reasons of that was because Iwas autistic and another one was because I'd never been in asituation like that before. Now, it wouldalso be a confusing thing to say to somebodyif English isn't their first language orif somebody might have a mild learning disability.And that's where certain typesof people, certain cultures, are actuallydisadvantaged. And this is why this book raisesimportant questions. We should not make theassumption that because somebody appears to beintelligent, they appear to be articulate, or because they'redoing parenting in a way thatseems unusual, that there'ssomehow something wrong with that. And this goes right back tothe beginning of our conversation that we were talking about thiswhen we were talking aboutparenting and stuff like that, is that not everybodytakes the same approach. You do get culturaldifferences in parenting, and because it's different doesn'tmean that it's harmful, it doesn't mean that it's abusive.And this is what came out in contact that Ihad after mybook was published, from peoplesaying that they've had these difficulties. They've had thosedifficulties simply because they're doing perfectlybrilliant job in a waythat's slightly different, that falls outside, that tick boxtype of approach. I completely get what you're saying
Joanne Lockwoodhost
there. When someone says non accidental, what they really mean is adeliberate injury. Why don't they say deliberate?But I guess the UK culture, the english culture, or theNHS culture at the moment is trying to be accusatory. So if someonesays someone's deliberately harmed this child, that sounds much moreaccusatory than a non accidental injury. So I can see why thelanguage. I
said to, I can remember saying at one part, well, why didn't you just sayit was a deliberate. Why did you say it was a non accidentalinjury? Because to me, a non accidentwas like a non event. I've said this to other peoplebefore, lots of times. I say it in my book, I've said it in otherpodcasts. It was like a non accident was the sameto me, in my head as a non event. He was ill, he'd get better,he'd go home. I was not expecting all therest of it. One, because it had never happened to me before. It hadnever happened to anybody. I knew it was completelyoutside of anything I'd experienced. I couldn'tunderstand why anybody would even think that I'd want to hurtmy baby. This was my third child. I hada ten year old, I had a five year old, and I hada very small baby. Why would anybodyeven think that? I've said this frequently. Idon't know. Why would you even think I'd want to do that?
Joanne Lockwoodhost
No, I completely get that. And I think one thing we can all take awayfrom this is thinking about the language we use. Arewe making language more confusing by trying to package it up?It is country lane driving, as you're saying, putting too muchdepth into it, rather than just saying it like it is. I completely understand that.Sometimes when we're trying to get a message across, we need to be maybe clearer,and that is more inclusive for all people, not just people with autism orautistic people. It's also people who maybe, just maybefrom different cultures, they want to be told straight rather than have it floweredup and lots of metaphors and descriptions there,but I completely get that. Well, thank you for your time today. It's beenreally interesting, and I know I've been laughing and chuckling a lot in the backgroundhere, as you've been talking. It's been some serious points as well. I've learned alot, and certainly the way I've been talkingabout autistic people, I'm going to change the stereotypes andmake sure I do some more research now, and it's been really fascinating to listento you about your life and your experiences asan autistic parent. So I'm sure our listenerswill have much to ponder and take inspiration from as well. Sopresumably our listeners can get in touch with you on LinkedIn or throughyour website, which I think is Lauriemorgan Co. UK. That'sLauriemorgenCo. UK and find you on LinkedIn as well as Lauriemorgan.
As soon as you spell my surname right, you're in know becauseit's quite unusual. Google will wantto suggest alternative spellings, butignore them, stick with it and. Go for the right spelling and
Joanne Lockwoodhost
they'll find you. Yeah, there's one of you. You know how to spell your Laurie
Morgan, you've met one?
Joanne Lockwoodhost
We sure have. Well, a huge thank you to the listeners who'vetuned in and listening to this right now. Please dosubscribe to keep updated on future episodes of the InclusionBites podcast. That's B-I-T-E-S. Tell your friends,tell your colleagues. I have a number of exciting guests lined up that I'msure you'll be inspired by over the next few weeks and months.Remember, if you'd like to be a guest on the show, please let me know.I'd also welcome any feedback suggestions for future shows howwe can improve. Tojo.Lockwood@seechangehappen.co.uk.my name is Joanne Lockwood and it's been an absolute pleasure to beyour host for this podcast today. Catch you nexttime. Bye.
