Latest / UK Column Radio / Unmasking Autism — with Sinéad Murphy

Transcript

Unmasking Autism — with Sinéad Murphy · UK Column Radio

0:07
Speaker 1: Hello, everyone, This is Diner with Missus mckelly, with you,
0:10
Speaker 1: k Colin. I'm happy to be joined today by one
0:13
Speaker 1: of our members. Actually the name is Janeeda Murphree. I
0:17
Speaker 1: met her for the first time back in our live
0:20
Speaker 1: event a few months ago in Bristol and we shared
0:23
Speaker 1: a couple of drinks and hopefully you enjoyed the day. Dave,
0:27
Speaker 1: what was your impression when you read the conference? Did
0:29
Speaker 1: you have a good time?
0:30
Speaker 2: I hope, thanks, Diane, and it's very nice to talk
0:33
Speaker 2: to you. And yes, I think like most people had
0:36
Speaker 2: a very good time at the Bristol conference. I mean
0:39
Speaker 2: everyone said this, but it bears repeating that it is
0:43
Speaker 2: a joyful thing to be in a room with a
0:47
Speaker 2: large number of people with whom one knows, one can
0:50
Speaker 2: share the jokes that one has stored up and told
0:54
Speaker 2: mostly to oneself during various phases of madness. So for
0:58
Speaker 2: that reason and many there is, it was an excellent occasion.
1:01
Speaker 2: Thank you.
1:03
Speaker 1: Yeah, I was really happy to see you there, and
1:05
Speaker 1: I'm looking forward to our next event, which is gonna
1:07
Speaker 1: be in April. So it's really it's great to see
1:09
Speaker 1: everyone in person, and it was what's really interesting about
1:14
Speaker 1: UK column members. Is that so many of you have
1:17
Speaker 1: things to share with us, and we get communications all
1:21
Speaker 1: the time from members who send us interesting videos, stories, opinions, comments,
1:28
Speaker 1: everything like this, and so this is one of the
1:30
Speaker 1: great things that I think you and I met each other,
1:33
Speaker 1: and you know, we have some other connections, but I'm
1:36
Speaker 1: really happy to be talking to you today about the
1:39
Speaker 1: topic of autism in general. I know that you have
1:42
Speaker 1: a child with autism, and you also have an academic
1:45
Speaker 1: background and you're doing some research in this area. So
1:49
Speaker 1: this is a topic of interest to a lot of
1:52
Speaker 1: our members. I see this come up frequently in conversations,
1:55
Speaker 1: and so I have a feeling that everyone has some
1:58
Speaker 1: different opinions, experiences with autism within their families, things that
2:04
Speaker 1: they've seen from other child, other people's children, maybe in
2:08
Speaker 1: their own in their own lives, and I have a
2:11
Speaker 1: feeling today that today's interview will generate some good discussion.
2:15
Speaker 1: So I hope that you're prepared for whatever the other
2:18
Speaker 1: members come back with, because there's some there's some strong
2:21
Speaker 1: ideas out there. So I'm really happy that you're willing
2:25
Speaker 1: to come in here and talk about your research, and
2:28
Speaker 1: I hope this will end up being a very good
2:30
Speaker 1: conversation for those of us who have interest in autism.
2:34
Speaker 1: I have to say for myself that I personally, I
2:37
Speaker 1: have a close friend whose son has autism, and I've
2:42
Speaker 1: seen this for a very long time, around twenty one
2:46
Speaker 1: years old now. But for me, it's it's not something
2:49
Speaker 1: that I live with every day, honestly, but I'm really interesting.
2:54
Speaker 1: I guess for you, I don't know if you want
2:56
Speaker 1: to maybe start with some of your personal stories, if
2:59
Speaker 1: you're comfortable with I know that you are a parent
3:02
Speaker 1: of a child with autism, which I assume is that
3:05
Speaker 1: what led you to start to do this research is
3:08
Speaker 1: just your experience with your son.
3:10
Speaker 2: Yes, it is, And in a way, I suppose I
3:14
Speaker 2: feel the responsibility of having a child with autism and
3:19
Speaker 2: having things to say about autism, because I think it's
3:23
Speaker 2: difficult to speak on the topic. As you said, it's
3:27
Speaker 2: one that has touched so many people's lives and continues
3:30
Speaker 2: to do. And I think without having a very close
3:35
Speaker 2: relative who suffers from the condition, and even to describe
3:41
Speaker 2: it as a condition from which anyone suffers is itself
3:45
Speaker 2: a controversial description. I think it would be difficult to
3:50
Speaker 2: speak on the topic without the personal connection. So I mean,
3:54
Speaker 2: I'm driven to do it because of that, because of
3:56
Speaker 2: my experience, but also I feel the pull of the
4:01
Speaker 2: responsibility to do it, if that makes sense. And I
4:05
Speaker 2: mean also I think living with autism, as in with
4:11
Speaker 2: a child dependent to his autistic is a peculiarly dispiriting
4:20
Speaker 2: sometimes and certainly exhausting experience. So to marshal the energies
4:28
Speaker 2: to speak on the topic, to attempt to articulate things
4:33
Speaker 2: that might be helpful in clarifying what's at staken it
4:37
Speaker 2: is not easy. So you know, I appreciate anyone who
4:42
Speaker 2: does that, and I wish to join them in so
4:46
Speaker 2: far as I can.
4:48
Speaker 1: And I think you're you're a really good place to
4:49
Speaker 1: be doing this research because, you know, in my academic background,
4:55
Speaker 1: it's interesting that one of the most cited papers that
4:58
Speaker 1: I have in my entire academic career was about ideas
5:02
Speaker 1: of different notions of authority on a topic. Right, because
5:05
Speaker 1: the way a doctor would talk about a medical doctor
5:08
Speaker 1: would talk about autism is very different from the way
5:11
Speaker 1: a parent would talk about it, and very different from
5:14
Speaker 1: the way a person who has autism works with it.
5:17
Speaker 1: So what's really interesting in your situation is that you
5:22
Speaker 1: have an acative background. If you have a PhD and philosophy,
5:25
Speaker 1: which is not what we're here to talk about today,
5:27
Speaker 1: but I think it gives you a couple of different,
5:29
Speaker 1: obviously notions of authority that makes you able to do
5:33
Speaker 1: this research on this topic. So you can speak from
5:35
Speaker 1: your personal experience every day as a parent and from
5:38
Speaker 1: your academic research. So how have you found those working
5:42
Speaker 1: together as you've been doing with this work.
5:45
Speaker 2: Both have I guess illuminated the other. It's impossible to
5:51
Speaker 2: if your background's in philosophy, to leave that behind, although
5:55
Speaker 2: professionally I have done that. But you know, my philosophical
6:01
Speaker 2: background was in an area called hermeneutics, which is not
6:06
Speaker 2: a very I guess well used or commonly used term,
6:10
Speaker 2: but it simply means thinking about the conditions under which
6:16
Speaker 2: we interpret the world or texts or other people under
6:20
Speaker 2: which we understand things, and how we might enhance that process.
6:25
Speaker 2: And a basic technique I guess in that area of
6:31
Speaker 2: philosophy has to do with attempting to generate and avail
6:37
Speaker 2: oneself of occasions that allow us to step back from something,
6:42
Speaker 2: so visiting another country, learning another language. These are ways
6:46
Speaker 2: in which one can gain perspective on the conditions of
6:49
Speaker 2: one's own existence. I mean, autism is an incredibly productive
6:55
Speaker 2: phenomenon in that regard, because to summarize autism is difficult,
7:01
Speaker 2: but I think one can make us stab at it
7:03
Speaker 2: by saying to be autistic is to be unworlded. More
7:07
Speaker 2: or less. It is stunning how the world does not
7:12
Speaker 2: grab people with autism in the way that we expect
7:17
Speaker 2: it to do, and in the way that it just
7:20
Speaker 2: does people who do not have autism. And in that
7:25
Speaker 2: sense it is all outside perspective. I mean, it makes you.
7:30
Speaker 2: It defamiliarizes even the most basic of interrelations of worldly
7:37
Speaker 2: purposes and functions and so on. As the parent of
7:41
Speaker 2: a child with autism, my time and my attention is
7:47
Speaker 2: largely spent in dismantling the basic processes of life, basic
7:56
Speaker 2: interactions of life, in order to bring my son into
8:02
Speaker 2: them in some way, you know, So even walking along
8:06
Speaker 2: a street to anticipate the trajectory of the person coming
8:10
Speaker 2: against us, because Joseph, that's my son's name, does not
8:16
Speaker 2: human beings are not salient to him in the way
8:19
Speaker 2: that they simply are to the rest of us, and
8:23
Speaker 2: so I cannot anticipate that he will move aside for
8:26
Speaker 2: the person or etc. So even at that very basic level,
8:30
Speaker 2: the entire of the world is suddenly something that one
8:35
Speaker 2: has to step back from and anticipate and see. And
8:40
Speaker 2: while that can be quite discombobulating, it is also, I guess,
8:45
Speaker 2: philosophically productive, because you begin to rethink even the most
8:51
Speaker 2: fundamental experiences of life.
8:54
Speaker 1: I know you have is that you have one other child.
8:56
Speaker 1: He does not have autism, if I remember correctly.
9:00
Speaker 2: That's right. I have an older son, so and it's
9:05
Speaker 2: true that he doesn't have autism, which is wonderful for
9:09
Speaker 2: all kinds of reasons, but including simply allowing me that
9:14
Speaker 2: kind of contrast point. And you know, it's I mean,
9:20
Speaker 2: we can talk about this, Diane, but one of the
9:22
Speaker 2: challenges of having a child with autism and engaging with
9:26
Speaker 2: institutions as one does more or less, is too you know, there's,
9:32
Speaker 2: on the one hand, a drive to identify children as different,
9:37
Speaker 2: and then oddly, when they are ident when they are
9:40
Speaker 2: thus identified, a drive to say, well, all children are
9:44
Speaker 2: like this, you know. And it's a very kevin fully
9:48
Speaker 2: explained why that is. But one of the things that
9:51
Speaker 2: has allowed me to maintain my sense of direction and
9:54
Speaker 2: orientation in the middle of it all is that I
9:57
Speaker 2: have well, two children, one of them is artistic and
10:00
Speaker 2: one is not.
10:02
Speaker 1: How does that affect the relationship in the house with
10:05
Speaker 1: having one who has it? And when does not? Do they?
10:07
Speaker 1: Do they get along? Well? Does one help the other?
10:10
Speaker 1: How does that work in your family?
10:12
Speaker 2: I mean it works wonderfully.
10:15
Speaker 1: You know.
10:15
Speaker 2: I love our life and I am. I'm appreciative every
10:19
Speaker 2: day of my older son, who has developed, you know,
10:24
Speaker 2: an understanding of people and a patience with it, because
10:27
Speaker 2: patience is the number one virtue that is required. Not
10:31
Speaker 2: because my younger son now is very disruptive, but he
10:37
Speaker 2: requires repetition on a scale that is really unimaginable unless
10:44
Speaker 2: you live with it. So you know, Patrick, his older
10:46
Speaker 2: brother services that with never an objection, for which I'm
10:52
Speaker 2: eternally grateful.
10:54
Speaker 1: I think I remember some things, and my memory is
10:56
Speaker 1: not entirely clear because there was wine on the table
10:59
Speaker 1: when we were talking when we were back in But
11:03
Speaker 1: I think I remember you talked about your son is
11:08
Speaker 1: not attending school. You took him out of school. What
11:11
Speaker 1: led you to that decision? And are you homeschooling him
11:14
Speaker 1: or how does that work with a child with autism.
11:17
Speaker 2: So it's true that Joseph no longer attends school. He
11:22
Speaker 2: attended school only part time once the return from the
11:29
Speaker 2: so called lockdowns occurred. And really, I mean those lockdowns.
11:36
Speaker 2: The school closure was horrific, of course and so on,
11:41
Speaker 2: but in many it was revealing for me, you know,
11:45
Speaker 2: the onset of autism, which occurs, at least the onset
11:48
Speaker 2: of clinical autism. Because I have come up with a
11:51
Speaker 2: rough taxonomy to try and somewhat clarify the muddy waters
11:56
Speaker 2: of autism. And so one of the categories that I'm
12:00
Speaker 2: now using is the category of clinical autism, which I
12:04
Speaker 2: used to describe the autism that emerges, you know, at
12:06
Speaker 2: about the age of two or three, and from as
12:10
Speaker 2: if from nowhere, and it is, you know, absolutely undeniable,
12:16
Speaker 2: and you know it's it will never retreat from then
12:21
Speaker 2: on forward. But so it emerges then, and of course
12:25
Speaker 2: your child is at a phase of really quite dramatic development,
12:29
Speaker 2: as all three in four year olds are at. So
12:33
Speaker 2: there's a real lack of clarity as to what's the autism,
12:37
Speaker 2: what's not, what will change and improve what won't. I
12:41
Speaker 2: mean children of four, You know, Joseph did not speak
12:45
Speaker 2: at four but children of four are often not that articulate,
12:49
Speaker 2: so the question is is he is he just behind
12:53
Speaker 2: or you know, so you have such uncertainty. And in
12:56
Speaker 2: the middle of it all, off he went to school
13:00
Speaker 2: and I never I regret this, I guess, but I
13:04
Speaker 2: never considered homeschooling or anything of that kind. And at school,
13:08
Speaker 2: he spent a year and a half there and learned nothing.
13:11
Speaker 2: I mean, he didn't learn to write anything, to read nothing,
13:16
Speaker 2: And I guess I was in the mode of wondering
13:20
Speaker 2: whether that was simply the case he could not learn
13:23
Speaker 2: those things. And this is all in the context of
13:27
Speaker 2: it being a very fraud few years. I mean, the
13:29
Speaker 2: years between three and eight are really quite dramatic, so
13:33
Speaker 2: your you know, your ability to assess the situation is
13:36
Speaker 2: also eroded. But then the school's closed and I started
13:41
Speaker 2: a kind of rudimentary homeschooling routine, and within five weeks
13:47
Speaker 2: Joseph was writing legible words. I was totally stunned, and
13:53
Speaker 2: I was never even that enthusiastic about the education system,
13:58
Speaker 2: but I could not believe that it could so ineffective,
14:02
Speaker 2: and so quickly, I, you know, I realized that that
14:07
Speaker 2: was the case, and then began to think about why
14:11
Speaker 2: that was the case, which is what led me to,
14:13
Speaker 2: you know, think about writing something on autism and bringing
14:17
Speaker 2: my I guess analytical skills to bear on the topic.
14:21
Speaker 2: But Joseph never did return to school full time and
14:25
Speaker 2: now does not go to school at all because as
14:28
Speaker 2: the as the as his aide, you know, as he
14:31
Speaker 2: got older, the curriculum became more and more alien to
14:36
Speaker 2: someone like him who is incapable of engaging with abstractions.
14:41
Speaker 2: And one of the things, you know, one of the
14:44
Speaker 2: interesting things that autism makes salient is how abstractly our
14:52
Speaker 2: education system delivers the learning that it purports to deliver,
14:59
Speaker 2: you know, even the most potentially involving experiences music or
15:06
Speaker 2: even pe, this kind of thing, so much of it
15:09
Speaker 2: is translated into passive reception of abstract ideas. And Joseph
15:15
Speaker 2: was absolutely incapable of that. I think many children struggle
15:19
Speaker 2: with that.
15:20
Speaker 1: Yeah, that's really interesting, and I think a lot still
15:23
Speaker 1: when I look back on twenty twenty lock ups as
15:28
Speaker 1: we call them here, usually you could call them. One
15:33
Speaker 1: of the things that I was doing at the time
15:35
Speaker 1: was research with a PhD student on the effect of
15:40
Speaker 1: the situation on people with dementia, because that was one
15:43
Speaker 1: of my research areas was dementia. And you know, thinking
15:47
Speaker 1: about for people with dementia. With my father died of dementia,
15:51
Speaker 1: how confusing that must have been that all of a sudden,
15:54
Speaker 1: these weird rules were imposed on the whole world, when
15:57
Speaker 1: you already have a difficult enough time understand standing the
16:00
Speaker 1: normal world, and then all of a sudden you're being
16:03
Speaker 1: told with dementia that you have to you're supposed to
16:06
Speaker 1: wear a mask where you're supposed to stay two meters apart,
16:09
Speaker 1: and all these ridiculous things that they tried to make
16:11
Speaker 1: us do. Were those things difficult with Joseph? Did he understand?
16:16
Speaker 1: Because he, you know, it's the sort of the other
16:19
Speaker 1: side of a lifespan. Compared to an older person with dementia,
16:22
Speaker 1: a young person still is learning about the normal world.
16:25
Speaker 1: And so how did you see that those weird things
16:28
Speaker 1: impacting on Joseph?
16:30
Speaker 2: It was profound. Diane, It's interesting that you introduced the
16:34
Speaker 2: question with the example of dementsia. I remember, very early
16:39
Speaker 2: on in the COVID business listening to an interview with
16:42
Speaker 2: a professor from University College Dublin called Dolaurs Cahill but
16:47
Speaker 2: one of the interesting observations she made, and she's in
16:51
Speaker 2: the area of biochemistry, I believe her professional area is
16:56
Speaker 2: that is the parallels that she drew between Alzheimer's or
17:01
Speaker 2: demensia generally and autism and you know, their connection with
17:04
Speaker 2: inflammation and so on. But I've found that kind of
17:09
Speaker 2: persuasive at the time and very interesting that in a sense,
17:13
Speaker 2: our population is now increasingly bookended by these two conditions
17:17
Speaker 2: which you share an awful lot and do require and
17:23
Speaker 2: you know, quite similar interaction with in order to support
17:28
Speaker 2: you know, so anyhow, But to answer your question more directly,
17:33
Speaker 2: I mean the effect of the lockdowns on or lock ups.
17:36
Speaker 2: I'm happy with that on Joseph Well, was yeah, utterly
17:40
Speaker 2: profound because Joseph he still has but certainly had at
17:45
Speaker 2: that aid, really no ability to appreciate a narrative, right,
17:51
Speaker 2: so all he can see are little bits, and you
17:57
Speaker 2: know if bits change, and this is why life can
18:00
Speaker 2: be quite trying, because you know, order must occur in
18:04
Speaker 2: the most trivial ways because he's not able to see
18:08
Speaker 2: the big pictures. So you know, very often we would
18:12
Speaker 2: tell our children that we're moving house, right, that's a
18:14
Speaker 2: big change. But we might not say that we're changing
18:17
Speaker 2: the CD in the CD player. That's a small change.
18:20
Speaker 2: But Joseph kind of would really not mind much if
18:23
Speaker 2: we were moving house in that sense. But the CD
18:26
Speaker 2: is a big thing, right, so so your perspective becomes
18:29
Speaker 2: very small. And yeah, so for him, the lockdowns were
18:33
Speaker 2: all about the small things, you know, and in particular
18:37
Speaker 2: for him because I guess said driving along in the
18:40
Speaker 2: car in the back of the car was something he liked,
18:43
Speaker 2: and suddenly the shutters everywhere really affected him so deeply
18:50
Speaker 2: that he would if he was not inside the car,
18:54
Speaker 2: he would become absolutely distressed at the present, you know,
18:58
Speaker 2: at the presence of a shutter and when everything opened up,
19:02
Speaker 2: at the possibility that there might be a shutter coming down.
19:05
Speaker 2: He's still, you know, five years later, has not recovered
19:09
Speaker 2: from that trauma. Shutters are still a big thing with him.
19:12
Speaker 2: He never ever built anything out of lego, never has,
19:15
Speaker 2: except for one thing, five blocks on top of each other,
19:19
Speaker 2: which he places in front of the doors of busses,
19:22
Speaker 2: little busses, the doors of his little playhouses. You know,
19:26
Speaker 2: he recreates shutters using legos. So yeah, I mean it's amusing,
19:32
Speaker 2: I guess in a way, but it's also just gives
19:35
Speaker 2: some insight into the enormity of what happened. I mean,
19:39
Speaker 2: and you know, again, Diana, it revealed so much because
19:42
Speaker 2: we had spent a year and a half in school
19:45
Speaker 2: and having meetings where it was discussed that we might
19:48
Speaker 2: coordinate the color of his pencil that he used at
19:51
Speaker 2: home with the pencil that he used in school. And
19:54
Speaker 2: now it's, oh, well, never mind all that the schools closed,
19:56
Speaker 2: you know, I mean, it was in a way, I mean,
19:59
Speaker 2: I I think it explains why from the very beginning
20:02
Speaker 2: all I was was outraged about the whole COVID thing
20:06
Speaker 2: because of the just the ease with which and the
20:12
Speaker 2: you know, implicit contempt for the needs of people that
20:17
Speaker 2: it exhibited, you know. And of course this was made
20:20
Speaker 2: just particularly obvious by people with needs and vulnerabilities.
20:26
Speaker 1: Yeah, it was. It was difficult enough for me, as
20:30
Speaker 1: an adult who doesn't have autism, to sort of adjust
20:34
Speaker 1: to this, you know, because I was still an academy
20:37
Speaker 1: at the time. All of a sudden, everything that I
20:38
Speaker 1: used to do on campus every days, you'll know, well
20:42
Speaker 1: that you have your students, you have your office, you
20:45
Speaker 1: have your classrooms, go home and do it all in
20:47
Speaker 1: front of your screen, all of a sudden, and that
20:51
Speaker 1: was dramatic for me. Other people who bought into the
20:54
Speaker 1: story a little bit more, I think, actually transitioned a
20:56
Speaker 1: bit easier because they were scared enough of this apparent
20:59
Speaker 1: deadly vibe is floating around that they were happy to
21:02
Speaker 1: do whatever they were told. But for me, it was
21:04
Speaker 1: really traumatic because of the fact that all of a sudden,
21:07
Speaker 1: my whole entire life just disappeared from the way that
21:11
Speaker 1: I saw it in twenty twenty. So I can't imagine
21:14
Speaker 1: that that sounds really really profound for your son, and
21:17
Speaker 1: I feel for any child that grew up as well
21:20
Speaker 1: as even for Patrick or any child who was that
21:24
Speaker 1: young in twenty twenty to not even be able to
21:26
Speaker 1: understand yet the general world around them. But then now
21:30
Speaker 1: this weird thing that's happened, and we don't have experience
21:33
Speaker 1: of it, so we can't explain it, and it's all
21:36
Speaker 1: very nonsensical. And then what do you do with that?
21:39
Speaker 1: Because even the university students I saw impacts on them
21:43
Speaker 1: that they were having mental health issues, and I was
21:46
Speaker 1: dealing with the fact that they were going into crisis
21:48
Speaker 1: situations and I couldn't refer them to the counseling services
21:51
Speaker 1: on campus because they were closed. So my heart goes
21:55
Speaker 1: out to you for trying to support him through that time.
21:58
Speaker 1: I can't imagine how that stressful that must have been
22:00
Speaker 1: for you as well as his mom. That must have
22:02
Speaker 1: been really hard.
22:03
Speaker 2: Wow, he was absorbed in a general stress. I guess
22:06
Speaker 2: which everyone was experiencing or most people who? I mean,
22:10
Speaker 2: some did seem to get high on the drama of
22:13
Speaker 2: it or the big meaningfulness apparently of it, But other
22:16
Speaker 2: than that, I think people were fairly miserable. But you know,
22:19
Speaker 2: one of the things, Diane, and this was true at
22:21
Speaker 2: university teaching too, is that education was even possibly to
22:31
Speaker 2: be delivered remotely, That it was possible even to simulate
22:35
Speaker 2: it remotely says something about how undermined education had become.
22:43
Speaker 2: You know, it's the same with healthcare. You know that
22:46
Speaker 2: a visit to your doctor is even potentially available via
22:51
Speaker 2: a screen or you know, or via a sort of
22:55
Speaker 2: phone call or a an algorithmically determined sort of transaction
23:01
Speaker 2: is already shown. It already shows how impoverished those possibilities
23:06
Speaker 2: have become. And you know, all children, of course, are
23:12
Speaker 2: really not available for screen learning. But I think in
23:16
Speaker 2: one sense, the great gift of a child like Joseph
23:20
Speaker 2: is that that is just utterly obvious. I mean, he,
23:24
Speaker 2: you know, a screen means nothing to him. It requires
23:28
Speaker 2: the language. He doesn't understand language as it it's spoken
23:31
Speaker 2: to him. He can't answer the question what's your name?
23:35
Speaker 2: I mean, just imagine the impossibilities that stack up so
23:40
Speaker 2: in a way. I mean, I've written a book on autism,
23:43
Speaker 2: and in part it is a hopeful book because it
23:47
Speaker 2: is an effort to argue that children with autism in
23:52
Speaker 2: fact flag through their dysfunction, and through their meltdowns and
23:59
Speaker 2: so on, all of the ways in which our society
24:03
Speaker 2: is in fact dysfunctional for all children. For example, let's
24:08
Speaker 2: keep it to children. And the things that children with
24:11
Speaker 2: autism need, the things they crave, are the things that
24:16
Speaker 2: all children need and crave. And perhaps what we ought
24:19
Speaker 2: to regret is the terrible ability that many of our
24:24
Speaker 2: children have, or have inculcated in them, the ability to
24:29
Speaker 2: kind of pass muster in the situation that we throw
24:32
Speaker 2: them into, the kind of institutional settings, the impersonal interactions,
24:39
Speaker 2: the overly abstract curricula, the remote modes, and so on
24:45
Speaker 2: that our children are able to able to suffer them
24:49
Speaker 2: is perhaps what ought to be regretted in a sense.
24:53
Speaker 1: I think it becomes even more abstract when you're online,
24:56
Speaker 1: and having done the teaching online in twenty twenty, there's
25:02
Speaker 1: really I guess there's some topics maybe that are easier
25:05
Speaker 1: to teach online than others. But I you know, I
25:08
Speaker 1: have a good friend who's a high school teacher, and
25:11
Speaker 1: hearing her stories of teaching high school age students anything
25:15
Speaker 1: when you know, high school's a difficult time enough for everyone,
25:19
Speaker 1: and there's all kinds of things happening, and you have
25:21
Speaker 1: all these social pressures and you want to fit in,
25:24
Speaker 1: but then you can't interact with each other the same way.
25:29
Speaker 1: And that was what I missed as well, about just
25:32
Speaker 1: being face to face with my students. They turned off
25:35
Speaker 1: their cameras so I couldn't even see if they were
25:37
Speaker 1: listening to my lecture, and it was all very impersonal
25:41
Speaker 1: and personally. I think it was a bit intentional, honestly,
25:44
Speaker 1: if we want to go down that route, which we
25:46
Speaker 1: can avoid for today, but I think that part of
25:49
Speaker 1: it was was intentionally to distance us, to break our
25:53
Speaker 1: social connections, and there was a reason it was called
25:55
Speaker 1: social distancing and not physical distancing. They really did want
25:59
Speaker 1: us a part and that does not help child children
26:02
Speaker 1: develop into the social creatures that they that they are
26:06
Speaker 1: meant to be. And I realized, you know, autism might
26:09
Speaker 1: be as something where they're not as social as people
26:12
Speaker 1: without autism. But I can't imagine that for any child's development,
26:17
Speaker 1: no matter what their what their challenges are, or what
26:19
Speaker 1: their strengths are, that having them sit at home in
26:22
Speaker 1: a room in front of a computer all day, that's
26:25
Speaker 1: not going to be it for any child's development if
26:28
Speaker 1: they have no chance to get out and see friends
26:31
Speaker 1: and go do normal child things. So I saw a
26:36
Speaker 1: lot of people struggling with that with their own children,
26:39
Speaker 1: and I certainly struggled with it. I was just at
26:40
Speaker 1: home by myself with my dogs and trying to manage
26:44
Speaker 1: teaching online. It was very, very difficult. I want to
26:50
Speaker 1: come back to your book because I know you have
26:52
Speaker 1: a book and you have some current research that you
26:54
Speaker 1: came to me with when you wanted to do this interview.
26:58
Speaker 1: I'm wondering if because these issues around what seems to
27:01
Speaker 1: come up a lot with a lot of UK column viewers,
27:04
Speaker 1: is that you know the cause of autism. There's a
27:08
Speaker 1: lot of different views on it. Debbie Evans had views
27:11
Speaker 1: on it. So the introduction of your book, and I
27:15
Speaker 1: have to been I haven't read the whole thing yet,
27:17
Speaker 1: but the introduction where you tell the story of what
27:21
Speaker 1: happened to you in your pregnancy and the questions around
27:24
Speaker 1: that are you are you willing to share that with
27:26
Speaker 1: the audience, And that's quite personal, but it's in your book.
27:29
Speaker 2: Yes, I don't mind. I came from a culture in
27:32
Speaker 2: which one says nothing about any of these things, but
27:36
Speaker 2: one fights against that. So yeah, I mean, it's true
27:38
Speaker 2: that Joseph was born in a very traumatic, traumatic set
27:42
Speaker 2: of events, but which ended in an abruption, which is
27:46
Speaker 2: a serious end to a pregnancy, and ended very early.
27:49
Speaker 2: But why I tell the story in the book to
27:52
Speaker 2: start with is that, you know, the the entire experience
27:58
Speaker 2: of Joseph's pregnancy revealed what I in the book wished
28:02
Speaker 2: to describe as a kind of autism in the health service.
28:06
Speaker 2: And I began writing the book before COVID, So when
28:09
Speaker 2: COVID happened, I was in kind of the first third
28:11
Speaker 2: of it. And I mean I didn't do anything for
28:13
Speaker 2: a couple of years, but I couldn't believe. You know,
28:17
Speaker 2: it was like the few chapters that I've written writ large,
28:20
Speaker 2: you know, and the few observations I'd made about the
28:23
Speaker 2: health service writ large. So yeah, I mean, because you know,
28:27
Speaker 2: when the pregnancy began, there was effectively I was told
28:33
Speaker 2: that it was a miscourage, so okay, and then it
28:36
Speaker 2: ended up not being And then throughout it, you know,
28:41
Speaker 2: Joseph wasn't not measuring correctly right, so he was very
28:44
Speaker 2: small and worryingly small and so on, and then at
28:48
Speaker 2: the end it ends in an abruption and a no,
28:52
Speaker 2: I mean that happened, you know, at home. That's a
28:55
Speaker 2: very It's a situation where time is of the essence.
28:58
Speaker 2: Luckily we lived, you know, about eight hundred yards from
29:01
Speaker 2: the hospital, so all of that was fine. But in
29:05
Speaker 2: a sense it ought not to have happened at home
29:08
Speaker 2: because as a midwife told me, and you know, in
29:12
Speaker 2: the health service now when I was pregnant, there was
29:16
Speaker 2: no continuity of midwife provision, so you don't build up relationships.
29:22
Speaker 2: But this midwife, who had never met before, said, well,
29:25
Speaker 2: of course the whole thing's connected. Of course, you know,
29:28
Speaker 2: the early excessive bleeding depleted the environment, the baby did
29:34
Speaker 2: not thrive through the pregnancy, and in the end the
29:37
Speaker 2: whole system breaks down. And I was stunned to hear that,
29:40
Speaker 2: because no one had suggested, you know, throughout the whole
29:45
Speaker 2: tobaccle that there was a concern about the terminate, you know,
29:48
Speaker 2: how the pregnancy would terminate, and that might have been
29:51
Speaker 2: had I lived somewhere else, a life threatening certainly for
29:57
Speaker 2: Joseph it would have been. And possibly so it just
30:02
Speaker 2: struck me that, I mean, the characteristics of autism, the
30:07
Speaker 2: two main characteristics are, you know, blockage to interaction and
30:13
Speaker 2: rigidity in patterns of thought and behavior. And here's a
30:17
Speaker 2: health service where no one's talking to anyone, and all
30:21
Speaker 2: of the measurements are you know, inputed in the most
30:24
Speaker 2: rigid way without being interpreted and without a narrative being
30:29
Speaker 2: formed from them. And it struck me that really the
30:34
Speaker 2: autism of the health service, the as ath autism had,
30:38
Speaker 2: you know, really negatively impacted the beginning of Joseph's life.
30:44
Speaker 2: I mean, as to whether the beginning of Joseph's life
30:48
Speaker 2: is linked to his autism, I don't know. I mean,
30:52
Speaker 2: there are links that have been drawn between premature birth
30:55
Speaker 2: and autism, but really I guess the autism like Joseph's,
31:01
Speaker 2: which I call clinical autism. I have not done an
31:05
Speaker 2: awful lot of research on it. It takes a number
31:08
Speaker 2: of years to even begin to contemplate it as a
31:10
Speaker 2: parent who is likely to have cause damage to their
31:14
Speaker 2: own child. But as I look at the research out
31:17
Speaker 2: of the corner of my eye, I am so far,
31:21
Speaker 2: you know, persuaded somewhat well that you know, certainly the
31:27
Speaker 2: very complex childhood vaccination program ought to be looked at
31:31
Speaker 2: very closely. I've read recently that there's no autism in
31:35
Speaker 2: the armored community. We are prevented, in a sense from
31:40
Speaker 2: sort of marshaling the wherewithal and the determination to solve
31:47
Speaker 2: this problem of the terrible rise in clinical autism by
31:51
Speaker 2: the fact that it is sort of very softly, softly
31:55
Speaker 2: rebranded as a kind of identity. So in a sense,
31:58
Speaker 2: if you're looking for the cause of votism, what you're
32:02
Speaker 2: prejudiced against boties, which is, you know, the identity label
32:07
Speaker 2: for them. And one of the struggles that I have
32:10
Speaker 2: is really a struggle that one ought not to have
32:13
Speaker 2: if you have a disabled child, is to insist that
32:17
Speaker 2: my child is disabled. I mean not, you know, insist implicitly.
32:22
Speaker 2: I don't go about the world doing this. But you
32:24
Speaker 2: have no idea how many settings, institutions and people one
32:28
Speaker 2: encounters you say, oh, bless you know, No, don't say that.
32:32
Speaker 2: You know if you say that I have a disabled child,
32:34
Speaker 2: but what would you call it? He will never live independently,
32:38
Speaker 2: he will never have a job, He'll probably never have
32:40
Speaker 2: a friend. I have a friend who's blind. No one
32:43
Speaker 2: would argue that that's not a disability, and she certainly
32:47
Speaker 2: would not argue that it's not a disability. But she
32:50
Speaker 2: has a full social life, she has a family, she
32:52
Speaker 2: has a child. You know, Joseph will never have any
32:55
Speaker 2: of those things. So it is a profound disability, profound
33:00
Speaker 2: exclusion from human sympathy and from significance and worldly functioning.
33:09
Speaker 2: So yeah, and what has caused it? I think this
33:13
Speaker 2: is the kind of question that we ought to be
33:17
Speaker 2: glamoring for an answer to. If I can say just
33:20
Speaker 2: one one thing more on this topic, is that part
33:26
Speaker 2: of the problem also is that the situation of those
33:31
Speaker 2: who are clinically autistic is somewhat obscured by the general
33:37
Speaker 2: pylon to autism, which is abroad. Now, you know, every
33:43
Speaker 2: second celebrity, is identifying as autistic, is receiving a retrospective diagnosis,
33:51
Speaker 2: and so on. So this floods the plane with autistics,
33:56
Speaker 2: and the reality, the tragic reality of the kind of
34:01
Speaker 2: autism that will never allow you to function in the world,
34:05
Speaker 2: will never go hidden, is hidden ironically by that sort
34:12
Speaker 2: of enthusiasm for identifying as autistic. So that is one
34:19
Speaker 2: of the issues. But there is also then one final issue,
34:23
Speaker 2: I think, which is that even though I am skeptical
34:26
Speaker 2: of the retrospective kind of diagnosis of fully functional people
34:31
Speaker 2: or highly functional people as autistic, on the other hand,
34:34
Speaker 2: I do think there are also two real forms of
34:39
Speaker 2: autism that are on the rise, which are not clinical autism,
34:44
Speaker 2: but which I call social autism and cultural autism. And
34:49
Speaker 2: just to say something on social autism to clarify that
34:53
Speaker 2: social autism I regard as the autism that children are
34:57
Speaker 2: now beginning to suffer from in all or piecemeal fashion,
35:01
Speaker 2: and which results from their startling consignment to screen living
35:10
Speaker 2: and institutional cause. I care. And these two experiences, which
35:18
Speaker 2: now dominate the lives of even very young children, are
35:21
Speaker 2: scrambling of normal development, I believe, and are producing this
35:26
Speaker 2: phenomenon which one observes, I spend a lot of time
35:29
Speaker 2: with children, and one observes it all the time, the
35:34
Speaker 2: autism like propensities and behaviors that are being produced in
35:39
Speaker 2: our children by what is really active neglect.
35:45
Speaker 1: Do you think that, I know there's debates out around
35:48
Speaker 1: vaccinations and causes of autism. Do you think that all
35:52
Speaker 1: of the screen time that children are exposed to now
35:55
Speaker 1: contributes to some of these characteristics in them?
35:59
Speaker 2: Absolutely? Absolutely, I do. It's not fashionable to say it,
36:04
Speaker 2: and because I know I have two children, I know
36:09
Speaker 2: I won't even say how common. I'll just say that
36:11
Speaker 2: it is universal almost that children live a life of
36:18
Speaker 2: you chat to casually to young children. I'm interested in
36:21
Speaker 2: their lives and how they live, you know, the side
36:24
Speaker 2: of football matches. And you know, one recently said, oh,
36:27
Speaker 2: we've just looked up for me his average time spent
36:29
Speaker 2: on his phone that week four hours a day, four
36:33
Speaker 2: hours a day, and it was a school week. You know,
36:36
Speaker 2: just think about that, and he's only twelve. This is madness.
36:41
Speaker 2: And all of the kinds of experience that are not
36:47
Speaker 2: available via a screen are being ignored the importance of
36:52
Speaker 2: them is being ignored, and they are replaced by highly generic,
36:59
Speaker 2: highly convention overly stimulating, hyperbolic images and streams of content
37:07
Speaker 2: which is scrambling. I mean, as an adult who does
37:11
Speaker 2: not do that. If I were to spend four hours
37:14
Speaker 2: looking at that material on any one day, I mean,
37:17
Speaker 2: it would addule you. And this is normal life for children.
37:20
Speaker 2: I have absolutely no doubt that this is producing the
37:25
Speaker 2: autism like behaviors that children are now beginning to exhibit,
37:30
Speaker 2: children who did not emerge as autistic at three as
37:34
Speaker 2: Joseph and his peers did.
37:37
Speaker 1: Yeah, I've seen this for years actually, even before phones
37:40
Speaker 1: were as common as they are now when everybody has
37:43
Speaker 1: them in their hands all the time. But even before this,
37:46
Speaker 1: when they had you know, sort of the little Nintendo
37:48
Speaker 1: game boys, and then I would see them in a
37:51
Speaker 1: restaurant where the children would be out with their parents
37:54
Speaker 1: having a meal and the child is stuck in the
37:56
Speaker 1: game boy. You know, this goes back ten fifteen years.
38:00
Speaker 1: Is even even back then, I was seeing that sort
38:03
Speaker 1: of behavior where, well, shouldn't they be talking with their
38:07
Speaker 1: their sister or their parents, but no, they're just looking
38:09
Speaker 1: at the screen. And you know what kind of family
38:12
Speaker 1: bonding time is that when you're just looking at that
38:16
Speaker 1: and not even looking at one another. It's it seems
38:19
Speaker 1: to be very isolating. But it also seems to me,
38:21
Speaker 1: my very limited knowledge of autism, it seems like that
38:24
Speaker 1: kind of behavior would be very favorable to a child
38:27
Speaker 1: that has as you call clinical autism because they don't
38:31
Speaker 1: or maybe can't interact, so it's comfortable for them. Right
38:34
Speaker 1: is that?
38:34
Speaker 2: Would that be absolutely right? And this is I mean,
38:38
Speaker 2: you know, a double tragedy is the children with autism
38:42
Speaker 2: are far more likely to be consigned to institutions and
38:46
Speaker 2: screens even more than children without because they like it.
38:53
Speaker 2: It's often said, well, I mean, really that should not
38:57
Speaker 2: be a start point with we are here to form
39:00
Speaker 2: our children, not to be led by you know, likes
39:05
Speaker 2: and dislikes. And actually the claim that they like it
39:08
Speaker 2: is often projected onto them because very often these screen experiences,
39:15
Speaker 2: you know, generate a kind of inertia on we fractiousness,
39:19
Speaker 2: which doesn't look at all like liking. So yes, I mean,
39:23
Speaker 2: it is a double tragedy that the conditions that produce
39:26
Speaker 2: what I call social autism in non clinically autistic children
39:31
Speaker 2: highly exacerbate clinical autism in those who suffer from that.
39:36
Speaker 2: So yes, and ironically, they're more likely to be exposed
39:40
Speaker 2: to it. That's true.
39:43
Speaker 1: So can you talk a little bit more about this
39:45
Speaker 1: classification that you've come up with. Do you have kind
39:48
Speaker 1: of an explanation for each one that you could provide us.
39:51
Speaker 2: I mean, it's a, I guess, a work in progress.
39:54
Speaker 2: I've just begun to use these terms because, and to
40:00
Speaker 2: some extent, I was provoked to do that by the
40:04
Speaker 2: rise relatively recently of this new concept of masking in autism.
40:11
Speaker 2: And I first encountered that on a BBC documentary which
40:14
Speaker 2: came out I think last year, and it was something
40:18
Speaker 2: like Inside the Autistic Head or Inside the Autistic Brain,
40:21
Speaker 2: something like this, and it featured a number of people
40:24
Speaker 2: who are autistic or identify as autistic, and at least
40:29
Speaker 2: one I didn't watch. I watched half one episode that
40:32
Speaker 2: was as much as I could bear. But the woman
40:35
Speaker 2: on the episode that I looked at presented herself as
40:40
Speaker 2: having to mask her autism when out in the world,
40:43
Speaker 2: and they put a video camera in her sitting room
40:46
Speaker 2: to show the kinds of behaviors that she really wanted
40:49
Speaker 2: to engage in that she had to suppress when she
40:52
Speaker 2: went out in the world. And this seemed to me
40:56
Speaker 2: utterly objectionable, because if you were to summarize autism, it
41:02
Speaker 2: is precisely the inability to mask. I mean, masking anything
41:08
Speaker 2: requires some awareness of other people, their judgments, worldly expectations,
41:16
Speaker 2: or possibilities. These are the very things that people with
41:19
Speaker 2: autism cannot do. So to say that autistics mask is
41:28
Speaker 2: first and foremost to deny the defining reality of autism.
41:34
Speaker 2: I mean, so that's the first thing. But the second
41:37
Speaker 2: thing is that it redirects our energies because masking becomes
41:41
Speaker 2: the focus. And of course it's bad to mask because
41:44
Speaker 2: we should be ourselves. So the energies are then focused
41:48
Speaker 2: on challenging and removing the masking and not the autism.
41:57
Speaker 2: And suddenly, the more autistic you can present as, the
42:02
Speaker 2: more inclusive the society is, and the more fulfilled in
42:07
Speaker 2: some way that you are, and the the autism charity
42:10
Speaker 2: in Ireland is called as I Am, So you know,
42:14
Speaker 2: it's it's society that is the problem.
42:17
Speaker 1: It is.
42:19
Speaker 2: But this seems to me a very problematic situation because
42:27
Speaker 2: it validates what is a common response to a diagnosis
42:33
Speaker 2: of autism and a child, which is to somehow accept
42:37
Speaker 2: or license all kinds of behaviors that are not appropriate
42:44
Speaker 2: in the world. They're not accommodatable in the world, they
42:47
Speaker 2: are not easy for other people or even possible for
42:51
Speaker 2: them to be around, and so in the and and
42:54
Speaker 2: often they are aggravating for the autistic person themselves, so
42:59
Speaker 2: called STiMi behavior for example, repetitive movement or sounds or etc.
43:05
Speaker 2: These can often be very limiting for the autistic person
43:09
Speaker 2: because having to spend your energies on that spinning or
43:14
Speaker 2: flapping or means that you don't have enough left for
43:18
Speaker 2: what might be more edifying kinds of observation or engagement. Now,
43:25
Speaker 2: in order to correct that, or to help the autistic
43:29
Speaker 2: person to limit their behaviors or to alter them or
43:35
Speaker 2: modify them is a very onerous task, and it takes
43:39
Speaker 2: a long time, but it certainly can be done. But
43:42
Speaker 2: it won't even begin to be attempted by if we
43:47
Speaker 2: buy into this concept of masking which is now being
43:51
Speaker 2: promoted by the institutions regarding autism, which is to say
43:56
Speaker 2: that the problem is that are the construins rains that
44:00
Speaker 2: are placed on the autistic person, and the autistic person
44:03
Speaker 2: should It's that typical trajectory of identity and coming out
44:08
Speaker 2: the autistic person should be allowed to come out. I mean,
44:13
Speaker 2: there's no doubt that there is a limit to how
44:16
Speaker 2: how much the child with autism can be It can
44:21
Speaker 2: modify their behavior, but they can do it to a
44:24
Speaker 2: large degree, and you can do it in very productive ways.
44:27
Speaker 2: So it doesn't have to be just stop doing that.
44:31
Speaker 2: It can be do this instead, swim fifty lengths rather
44:37
Speaker 2: than I mean, this is the the the real tragedy
44:42
Speaker 2: of autism is that it sort of licenses this hands
44:51
Speaker 2: off approach in respect of children who require even more
44:55
Speaker 2: intense hands on than non autistic children.
45:01
Speaker 1: Right. It's interesting that the name of the charity in
45:04
Speaker 1: Ireland that you suggested, because it reminded me again another
45:08
Speaker 1: comparison to dementia, because one of the things that I
45:11
Speaker 1: learned when working with my father when he had dementia
45:15
Speaker 1: was that you basically you can't expect them to adapt
45:19
Speaker 1: their behaviors even if they're really difficult. They can turn violent,
45:24
Speaker 1: they can turn just completely unpredictable, and you just you
45:29
Speaker 1: have to go to where they are. They can't come
45:31
Speaker 1: to you. And I'm kind of hearing that a little
45:33
Speaker 1: bit as well, and what you're saying about working with
45:36
Speaker 1: someone with autism at the same time.
45:39
Speaker 2: I mean, it's certainly a balancing act. It is something
45:44
Speaker 2: that requires primarily a lot of time, repetition, and care
45:51
Speaker 2: in the truest sense of that word. And it is
45:53
Speaker 2: precisely the thing that institutions cannot do. I mean, one
45:58
Speaker 2: of the remarkable thing about school and what emerged around
46:04
Speaker 2: school and Joseph was the emphasis on the role that
46:09
Speaker 2: would be played by his one to one support person,
46:14
Speaker 2: by his teacher. It's all about the role, not about
46:17
Speaker 2: the person, and institutions find the personal utterly objectionable. That
46:24
Speaker 2: is what ought not to be involved. And in a
46:27
Speaker 2: sense it reframes the parent as in a somehow overly
46:33
Speaker 2: personal role or sorry relation with regard to their child,
46:38
Speaker 2: so that you wouldn't know why, because well, you're a
46:43
Speaker 2: person who is too involved with them. And you see
46:46
Speaker 2: this all the time that parents appeal to the teachers,
46:52
Speaker 2: the psychologists, whatever, they appeal to them as knowing more
46:58
Speaker 2: about their own child. But in fact, children with autism
47:03
Speaker 2: absolutely require that personal involvement because the level at which
47:12
Speaker 2: they learn and the pace at which they learn is
47:17
Speaker 2: so slow and so minute that nothing bought an every day,
47:22
Speaker 2: up close and personal repeated, routine and sort of involvement
47:29
Speaker 2: in the mundane aspects of life. That is what will
47:33
Speaker 2: succeed with children with autism, precisely what the institutions neither
47:37
Speaker 2: value nor provide.
47:39
Speaker 1: That seems as well to go along with them. A
47:43
Speaker 1: lot of other topics that we cover regarding children at
47:46
Speaker 1: UK column around the institutions sort of taking over the
47:51
Speaker 1: state taking over children and not just you know, there's
47:55
Speaker 1: obviously the horrible child snatching cases that Brian Garrett has
47:59
Speaker 1: been covering recently around social services coming and taking people's babies,
48:05
Speaker 1: but the child abuse situations, the stuff that I cover
48:09
Speaker 1: about the sexualization and the inductrination that's built into so
48:12
Speaker 1: called school curriculums. Now, what I'm hearing from you, just
48:17
Speaker 1: from my perspective, is that there is the institutions once
48:23
Speaker 1: again failing our children and not allowing parents to be
48:27
Speaker 1: involved in what they should be able to say happens
48:30
Speaker 1: to their children when they are sent away to school.
48:33
Speaker 1: And it sounds like once again their involvement is overreaching
48:38
Speaker 1: and inappropriate and not fit for purpose for the children.
48:41
Speaker 1: Would you agree with that too.
48:43
Speaker 2: Even accepting the label of autism is already a step
48:48
Speaker 2: down that road, and it was the most a challenging
48:53
Speaker 2: thing about Joseph's situation was the moment that you know,
49:00
Speaker 2: he was given and I accepted the label of autism
49:03
Speaker 2: for him. It was a hugely demoralizing and alienating phase
49:09
Speaker 2: because it comes with so much content, and it inserts
49:16
Speaker 2: itself right there between you and your child, who previous
49:20
Speaker 2: to that you had interacted with without this label. And
49:25
Speaker 2: so whatever behaviors were there, whatever tendencies, you were dealing
49:30
Speaker 2: with them one by one and in an unmediated way.
49:36
Speaker 2: And I won't say that there was nothing about the
49:38
Speaker 2: label that was helpful, but for the most part it
49:43
Speaker 2: was hugely depressing, and it was a feeling of something
49:49
Speaker 2: having been inserted between me and him. Is that autism
49:54
Speaker 2: or is that Joseph? And if it's autism, then that's
49:58
Speaker 2: very impersonal prism through which to experience your child. And
50:05
Speaker 2: if you allow it into, you know, into that space,
50:10
Speaker 2: there will come. There will be placed all kinds of
50:14
Speaker 2: strategies and techniques and professional advice, even pharmaceuticals if you
50:22
Speaker 2: are not careful, and all of those are highly engineered
50:28
Speaker 2: and highly impersonal effects that insert themselves right there. So
50:33
Speaker 2: the label itself is like a capture of your child,
50:38
Speaker 2: an institutional capture of your child. And I use it,
50:41
Speaker 2: of course because we require some base camp with which
50:45
Speaker 2: to discuss phenomena in the world with people. But I
50:49
Speaker 2: use it with some degree of reluctance.
50:53
Speaker 1: I suppose that makes complete sense. Very insightful. We have
50:59
Speaker 1: just a few minutes left, but I was wondering if
51:01
Speaker 1: you wanted to maybe just give a quick summary of
51:04
Speaker 1: what's in your book, and we'll put a link to
51:06
Speaker 1: it in the write up for this interview so that
51:08
Speaker 1: everybody will go and buy it. Do you want to
51:10
Speaker 1: tell us a little bit?
51:12
Speaker 2: Yeah, thank you, that's very generous. A few Diane. So
51:17
Speaker 2: the book is, I'm simply structured. It has two parts.
51:21
Speaker 2: The first part is divided into three health, education, and care,
51:26
Speaker 2: because these are the three institutional channels that you interact
51:31
Speaker 2: with the moment that your child is given a diagnosis
51:33
Speaker 2: of autism. It's a very odd diagnosis because it's a
51:36
Speaker 2: kind of quasi medical diagnosis, and so it has all
51:40
Speaker 2: the impact and the punch of a health category, but
51:45
Speaker 2: with none of the consequences in a sense, because it's
51:47
Speaker 2: not actually attended by medical conditions. It can be but
51:52
Speaker 2: not necessarily, and so that the book outlines the manner
51:58
Speaker 2: in which health is attacked or undermined by our health system,
52:08
Speaker 2: which really is an illness system, and so you know,
52:13
Speaker 2: reframes our experience of our own body in terms of
52:17
Speaker 2: the illnesses that it does have or might have, and
52:20
Speaker 2: administers us in that way, and in that sense inserts
52:25
Speaker 2: itself between us and our own confidence with regard to
52:29
Speaker 2: attending to what well our health as it should be.
52:34
Speaker 2: And the second chapter education again addresses the manner in
52:39
Speaker 2: which the rendering abstract of every possibility in fact militates
52:48
Speaker 2: against real educational potential. And then thirdly, the care chapter
52:59
Speaker 2: describe the way in which kind of signals of care,
53:04
Speaker 2: as sort of documented by institutions and delivered by them,
53:08
Speaker 2: you know, actively militate against real care. And I guess
53:12
Speaker 2: the argument is that in so far as the autistic
53:15
Speaker 2: child interacts with institutions of education, health, and care, they
53:20
Speaker 2: reveal quite clearly, if you attend to it, the ways
53:23
Speaker 2: in which real education, real health, real care ought to
53:28
Speaker 2: be delivered and ought to be abroad. And then the
53:32
Speaker 2: second part addresses these themes of society and self. And
53:38
Speaker 2: so with regard to society, it examines the ways in
53:42
Speaker 2: which strategizing has come to substitute for kind of more
53:48
Speaker 2: fullsome social interaction. And in fact, with this regard, I
53:53
Speaker 2: listened to an account that you gave recently, Diane, about
53:56
Speaker 2: the government website that you can go to for knowing
54:01
Speaker 2: how to remember the day of remembrance for COVID or
54:04
Speaker 2: something like this, And you can actually click on a
54:07
Speaker 2: government website and it will tell you how you can
54:10
Speaker 2: remember it, I mean the most and of course it
54:13
Speaker 2: will do so no doubt. I haven't looked at it
54:15
Speaker 2: in the most infantile of ways. So in a way,
54:18
Speaker 2: I mean, one of the things I'm interested in is
54:20
Speaker 2: the way in which our the trajectory, the direction of travel,
54:24
Speaker 2: which is a favorite UK column phrase, is towards reframing
54:28
Speaker 2: the entire population as if autistic, because that's what you
54:32
Speaker 2: do for you know, the institutions do for autistic people.
54:35
Speaker 2: They bring them over here, they break down kind of
54:39
Speaker 2: various life functions, they give them a little emoji drawings. Well,
54:43
Speaker 2: this is this is what we're being subjected to. So
54:48
Speaker 2: I mean, what I kind of attempt to outline aspects
54:52
Speaker 2: of that and how it has eroded real social possibilities.
54:55
Speaker 2: And finally, then the chapter on the self has to
54:59
Speaker 2: do with the rise of identity as a mode of
55:05
Speaker 2: interacting with ourselves and each other, so that we are
55:09
Speaker 2: re engineered as a kind of constellation of identities, and
55:13
Speaker 2: that these are very abstract theoretical forms, and you know,
55:17
Speaker 2: the very thing that people children with autism cannot interact with.
55:22
Speaker 2: I mean, Joseph doesn't even know what a mother is.
55:25
Speaker 2: He doesn't know that I am his mother in the
55:27
Speaker 2: same way as you know the child down the road
55:30
Speaker 2: has a mother. He absolutely cannot experience or appreciate abstractions.
55:37
Speaker 2: So I am mama very particular. So if you want
55:42
Speaker 2: something that is the absolute opposite of the identity mode,
55:47
Speaker 2: you know, we're all experienced, as you know, by or
55:53
Speaker 2: extrovert or you know, all of these, and we understand
55:56
Speaker 2: ourselves and one another as a sort of collections these
56:00
Speaker 2: very abstract terms. Nothing could be more opposite to the
56:04
Speaker 2: kind of glorious focus on the particular and the singular,
56:08
Speaker 2: which is what Joseph is able to do. And I
56:11
Speaker 2: mean in that book, I do I do also try
56:14
Speaker 2: to present the great gifts that people with autism have,
56:18
Speaker 2: by which I do not mean they're fantastic ability at
56:21
Speaker 2: maths or anything. I simply mean that the way in
56:24
Speaker 2: which people in particular are made salient to children with
56:29
Speaker 2: autism and are loved by them and noticed by them,
56:34
Speaker 2: you know, the people close to them, is really wonderful
56:37
Speaker 2: and quite different from our rather jaded and overly over theoretically,
56:43
Speaker 2: overly theoretical ways of relating to ourselves and other people.
56:48
Speaker 1: It's fascinating and looking forward to reading the rest of it.
56:50
Speaker 1: I didn't get through it all before our discussion, but
56:54
Speaker 1: this has been helpful anyway, so I know what I
56:55
Speaker 1: have to look forward to, and I finish it six
56:59
Speaker 1: again for your today. Is there anything else that you
57:03
Speaker 1: wanted to say to the audience that we didn't cover,
57:06
Speaker 1: that you wanted to tell them?
57:08
Speaker 2: I mean, I suppose I could end finally, because it
57:11
Speaker 2: is something that might be of interest to people generally
57:15
Speaker 2: who are not, you know, affected by clinical or perhaps
57:20
Speaker 2: even social autism. Because I have a third I have
57:23
Speaker 2: come up with a third category which I think is
57:26
Speaker 2: a significant one, although perhaps only in its infancy in
57:30
Speaker 2: terms of its emergence, and that is cultural autism. Because
57:35
Speaker 2: you know the the I mean, some of the philosophers
57:40
Speaker 2: who I have read from Italy, for example, Paolo Verno.
57:45
Speaker 2: Ivan Illitch is another. They are interesting on the way
57:48
Speaker 2: in which what is required now in substitute for the
57:53
Speaker 2: more organic or traditional modes that were characteristic of societies
57:58
Speaker 2: in the past. What is required now is a very
58:01
Speaker 2: shallow but virtuosic social kind of mode, so that we're always,
58:07
Speaker 2: in a sense on ready to deliver, you know, the
58:10
Speaker 2: appropriate sentence or the pick the appropriate emoji in kind
58:15
Speaker 2: of constant stream of interaction. And that this, you know,
58:19
Speaker 2: that this cultural mode, this requirement for a constant, low
58:25
Speaker 2: level virtuosity, is producing in people kind of autism like propensities.
58:32
Speaker 2: You know, people experience themselves as disaffected, dissillusioned, or they're
58:38
Speaker 2: hyper stimulated. And those really are two kind of red
58:42
Speaker 2: flags for autism, right, the combination of you know, inattention
58:46
Speaker 2: absent mindedness and hyper attention and hyperactivity. And you know,
58:52
Speaker 2: if you look at the ways in which we are
58:55
Speaker 2: now expected to operate in the world, which is a
58:58
Speaker 2: highly over stimulating world with traffic and lights and noise
59:02
Speaker 2: and constant beats and input, and then we must output
59:07
Speaker 2: the most kind of generic but constantly in play phrases
59:13
Speaker 2: and you know, replies, and of course we crave to
59:18
Speaker 2: be assisted in that, so we take the drop down lists,
59:21
Speaker 2: or we say yes to that which shall I will
59:23
Speaker 2: a I write your eBay description. Yes please. So you know,
59:28
Speaker 2: we are in a state of sort of disaffected frenzy.
59:32
Speaker 2: And I would like to at least suggest that this
59:35
Speaker 2: is a sort of the advent of cultural autism. And
59:39
Speaker 2: there was there was a study done by the University
59:42
Speaker 2: of Montreal in twenty nineteen, and it conducted a meta
59:45
Speaker 2: analysis of trends in the diagnosis of autism, and it
59:49
Speaker 2: concluded from analyzing trends that if the trends continue by
59:54
Speaker 2: twenty thirty two, it will be statistically impossible to distinguish
1:00:01
Speaker 2: between those in the population who merit the diagnosis of
1:00:04
Speaker 2: autism and those who do not, by which time we
1:00:07
Speaker 2: are all effectively autistic. So we ought perhaps to attend
1:00:11
Speaker 2: to autism as a more general encroachment upon us all.
1:00:17
Speaker 1: That's a really really fascinating place to end. That gives us,
1:00:20
Speaker 1: I think all a lot to think about and the
1:00:23
Speaker 1: ways that we have to be in the world, even
1:00:26
Speaker 1: now in twenty twenty five, just to all the expectations
1:00:29
Speaker 1: that are either imposed on us, or that we believe
1:00:33
Speaker 1: or imposed on us, and the things that maybe we
1:00:36
Speaker 1: are taking on that we wouldn't have done thirty years ago.
1:00:39
Speaker 1: It's really really interesting. Are there any final thoughts that
1:00:43
Speaker 1: you want to share other than that?
1:00:44
Speaker 2: I mean, well, okay, so one thought I might end with,
1:00:49
Speaker 2: which is something that I just noted recently. I mean,
1:00:51
Speaker 2: with the much, much exposure that the inauguration of Donald
1:00:57
Speaker 2: Trump had, and it was significant at least to me that,
1:01:01
Speaker 2: you know, Elon Musk gave the salute, you know, at
1:01:05
Speaker 2: the inauguration, a Nazi style salute, but then it was
1:01:10
Speaker 2: all okayed afterwards because he's autistic supposedly, and you know,
1:01:16
Speaker 2: you can throw up your eyes at that and dismiss it,
1:01:19
Speaker 2: but to me it seemed quite sinister because again, if
1:01:23
Speaker 2: we return to the fact that if you claim autism,
1:01:26
Speaker 2: then the problem now has to do with, well, can
1:01:29
Speaker 2: you find a place where you don't have to mask?
1:01:31
Speaker 2: Because masking is bad, and autism it's an identity, so
1:01:35
Speaker 2: it should come out. So it's okay if you do
1:01:39
Speaker 2: a Nazi salute or if you stim in public, because
1:01:45
Speaker 2: that's healthy and what's not healthy is to mask it.
1:01:48
Speaker 2: So it's healthy that Elon Musk did ask did a
1:01:54
Speaker 2: Nazi salute at the inauguration. But since he's also you
1:01:58
Speaker 2: know that so champion of free speech, one wonders about
1:02:02
Speaker 2: the value of this free speech that will result from
1:02:06
Speaker 2: a society full of autistics who are acting out because
1:02:10
Speaker 2: they're not masking anymore. I mean that speech potentially is
1:02:16
Speaker 2: not worth much, doesn't make much sense, cannot produce much effect.
1:02:21
Speaker 2: So the main business of living will have to be
1:02:24
Speaker 2: conducted by others and their machines. So, you know, the
1:02:30
Speaker 2: sort of the great promise of free speech is delivered
1:02:33
Speaker 2: by Elon Musk was for me at least given an
1:02:36
Speaker 2: interesting turn that day by the fact that, well, if
1:02:40
Speaker 2: free speech is a Nazi salute at an inauguration, who's
1:02:45
Speaker 2: going to be doing the real business of running the
1:02:47
Speaker 2: world or running our lives, Because it won't be us.
1:02:52
Speaker 2: Autistics will be stimming to no good effect. So anyway,
1:02:58
Speaker 2: that's perhaps I thought end with, Yeah, that.
1:03:02
Speaker 1: Is interesting, and I guess, well, if he's the world's
1:03:04
Speaker 1: richest man, he can do what he wants, apparently, and
1:03:07
Speaker 1: he seems to be doing just that. So yeah, to
1:03:11
Speaker 1: be continued, I think in this strange world we're living
1:03:15
Speaker 1: in right now. Thank you Shanet for your time today.
1:03:18
Speaker 1: This was really fascinating and I'm sure the other members
1:03:21
Speaker 1: and people out there will really learn from this as well.
1:03:26
Speaker 1: I just want to thank you again for your time
1:03:28
Speaker 1: and your openness and your willingness to speak out about
1:03:32
Speaker 1: what I know is obviously a very very personal topic
1:03:35
Speaker 1: for you and your family. So again, this is din
1:03:38
Speaker 1: Reestmus and Macattie with you can call him news and
1:03:41
Speaker 1: that we will see you on the next one. Thanks
1:03:43
Speaker 1: very much, thank you.
1:03:45
Speaker 2: Thanks toanne H