Full interview transcript:
Michael Short: Amanda Curtis, welcome to The Zone and thank you very much for your time. You’re here to talk about Asperger’s syndrome – or autism spectrum disorder – and about what you have done to help children understand and embrace their peers with Asperger’s. Perhaps we should start with an overview of Asperger’s, please.
Amanda Curtis: Asperger’s falls on the autism spectrum and usually covers three main areas: communication, where people on the spectrum have difficulty with communication; social skills, fitting in with their peers; and quirky little eccentric habits like obsessions, where they get so focused on different things that it interferes socially.
That is what my book is about – addressing those sorts of issues that stand in the way of helping some of these children mix with their peers successfully.
MS: There can be a really enchanting lack of guile in people with Asperger’s, and they can be very easily misunderstood. It doesn’t necessarily reflect poorly on the people who are around them; it is something where we need to have some knowledge to empower us to embrace the difference, and I know that you are an advocate of disclosure under certain circumstances. Can you talk of little bit about that serendipitous and wonderful nature of people with Asperger’s, and how the broader community might better understand?AC: I will give you an example with my little boy in primary school. In prep, before the other students knew he had Asperger’s, before we disclosed, he went up to a little girl – it was soon after Easter, so he must have had rabbits in his head – and he said to the little girl “do you know you have big buck teeth just like a rabbit. You look like a rabbit; your teeth are so huge you look like a rabbit.”
And this little girl had a beautiful set of teeth, but these kids with Asperger’s visualise things differently to us – things that might just look like a beautiful set of teeth, he noticed her two front teeth and he had to tell her that she looked like a rabbit, and of course she went off really upset.
The events that followed, that my son relayed to me, was her friends showed concern and asked what happened etc. as they saw their friend upset, Philip was not too popular at that moment and felt excluded. Now, if the girl had had the understanding that he had Asperger’s, she could have said different things to him. Instead of getting upset, she would understand that sometimes he tells the truth or sees things differently and that he just says it in a way that might be upsetting.
If peers understand their friend with Asperger’s, they would know “my friend doesn’t really mean to hurt my feelings, but what I can say to him is “stop it, I don’t like it, that hurts my feelings”, and the incident would end there. And so my son knows that he has done something that is not socially acceptable, and the little girl doesn’t go off upset to her friends and causing a situation that needn’t have happened.
MS: Before we get onto the book, and I would have a good look at that, perhaps you might talk a little bit about your son Philip, who is eight and will be nine this year. Talk to me about your son please.AC: His sense of humour is absolutely wicked and quick. He is incredibly funny. He is amazing with his illustrations and drawings, and he is into comics at the moment and drawing little comic strips and the sequence of events.
He had a lot of problems in prep socialising, where he would grab other children. We did months and months of therapy with him before he started Primary School, to try and help him learn to respect personal space and not to grab other children. To be frank, the only way I think he figured out that he should not grab onto other children is because he was hit all the time on his arm when he grabbed others and would not let go. He would come home with his forearm spotted with bruises and I would ask him “how did you get these?”. He would not answer, but I knew it was because he was gripping peers and just couldn’t let go, I had seen it myself when he played in the school yard before and after school. Please let me explain that the other children were just doing what they could to make this little person stop grabbing them, his peers were not bad or to blame, they are all beautiful children in the school. It’s just one of those things that happen.
This is one thing with these Asperger’s children – their minds are like train tracks; once they have got an idea they just stick with it, and for him it was holding on. He learned not to grab because he had been hit back and it hurt.
He used to hit other children and sit too close to them. They were the sorts of behaviours that excluded him and got him into social situations which were really difficult.
The intervention that took place and the continual interventions that we have in place and the consistent language, the routines, schedules, different behavioural tools are helping. Sometimes it falls over; when you’re having a tired day and you don’t feel like putting up the schedule, or towards the end of the year when everyone is tired and it seems Philip is tracking well enough to drop the strategies. But, it is constant, and you can’t let your guard down or let the strategies fall over or your consistent approach stop at any moment.
My little boy is doing well and he will always do well with the right support. All these kids will do well in whichever path they choose; they are little leaders in their own right, they are fantastic little people who have specific interests and passions and they will be so good at whatever they choose and so successful, and this is the type of talk that I feel, is missed a lot when children are being diagnosed and talked about in clinical settings.
These special little people have so much to offer in their field, whether it be typing all day or designing engines or being a rock star, they will do well with whatever they choose because of their obsessed nature.
MS: From our earlier discussion, one of the points that came out strongly was the need for, or the benefits associated with, early diagnosis and early intervention. Can you talk a little bit about that please, Amanda?AC: It is absolutely important. There seems to be a common theme of the “overly concerned mother” and that mums are being told by paediatricians/specialists that their young child’s behaviour will settle. I have heard lots of stories in that regard. One therapist told me that by the time the child gets to her Occupational Therapy clinic at around five years of age, with the mum absolutely beside herself with concern that her gut is telling her something is not right, that 100% of the time the mum has been right and the child is a special needs child.
Sometimes children get picked up and diagnosed early. Sometimes they are left until the age of five or six, until they start school and that’s where it is picked up. Please, I want to emphasise that I am no expert and I do not know if more work needs to be done in that area, but certainly there are many children who’re picked up when they first start school, because that’s where most of the problems occur.
But definitely – had my son been picked up at three years old and had been diagnosed then, there could have been a lot done at that age to prepare him for school.
MS: And he was not diagnosed until a few years after that?
AC: That’s right.
MS: You mentioned earlier how tiring it can be. Parenting young children, I know from experience, is tiring anyway, and I should imagine, and I think statistics show, that having a child with Asperger’s can be quite difficult within a marriage. Can you talk a little bit about that?AC: I think any special-needs child places extra pressure, and, as you said, any children place pressure on a marriage when you have to get used to different things and different ways of operating in the household.
There are different statistics to show the rate of divorce of parents with children with Asperger’s – some say 65%, others rate it as high as 80%. I am part of that percentage.
MS: It’s very high.
AC: It is high, and it is something that I feel personally needs to be looked at.
MS: Perhaps this is a good time to look at the book, Amanda. The book is different to the many books about Asperger’s in that it is not about Asperger’s per se; it is to help the peer group and others in the community understand, embrace and celebrate children with Asperger’s. Can you talk about the book please, and what effect it has had?
AC: I am so glad that you talked about the celebration of these children! Quite often when I carry out public speaking about my book and its worth I receive the feedback from attendees “great, my child with Asperger’s will now be tolerated”. And I say I don’t want our kids to just be tolerated and accepted, I want our kids to be celebrated!
My son is cool. He’s probably one of the coolest kids in the school playground, the same as all children with Asperger’s. You know, I’ve heard of a child with Asperger’s that wants to wear a fedora hat all day and a tie – I reckon that’s cool, that is different from all the others.
I want to push that point: they are not sheep, they are little leaders in their own right and us parents should be proud of that! My little boy had trouble fitting in socially and in the classroom and being understood by his peers and by his peers’ parents. My book is very much behavioural driven. I used to work in business, so I’m very much into stakeholder management.
I thought if I had to get my little boy accepted, education is the key and managing his stakeholders important, which are his immediate peers and their parents. We underestimate the amount kids understand at the junior level in primary school. They are intelligent and they are flexible (much more so than when we were at that age!). Their minds are not set yet.
That’s why my book is set for children between prep and grade two, even though it is being used in middle school as well. If we can get into their minds and develop their attitudes that there are different people and yep, that’s Asperger’s, that’s all it is and we’ve got to accept them and help them – peers will (hopefully) carry that right through to high school and adulthood.
They get it. These kids get it. Once they have read the book, they think that is why that little boy flaps his hands when he’s excited and jumps up and down. And it looks really silly, but he’s excited and why does he do it? Well, he doesn’t know how to control his emotions, and what can we do when we see that happening? We can just think, okay he’s flapping his hands and is excited and we can just understand that behaviour and we can just leave him be.
Another behaviour of children with Asperger’s is they don’t have good spatial awareness. They might sit too close to their peers. And this can be really off-putting for other children. My son used to almost sit on top of other children on the mat and he would get the elbows in the ribs and be told to get away. And I would see all that when I volunteered in the classroom.
So my book tells the child, that is being overcrowded, look he doesn’t mean to sit on top of you, he doesn’t know he’s doing it, so just put your hand up and say “please will you move away and please do not be a space invader”, and your friend will move. He’s not doing it on purpose. My book is helping all the other children around my little boy learn social skills.
And you know what, I think it’s about time! Let me explain…
Us parents of children with Asperger’s – we are sitting in clinics for years, whether our kids are diagnosed or undiagnosed, we know there are problems. We’re taking them to the Royal Children’s for blood tests. We’re taking them to the physio, because quite often these kids are clumsy and need special assistance in that area. We’re sitting in occupational therapists’ offices. We’re sitting in psychologists’ offices. We are sitting and waiting and attending appointments for hours and hours on end. This quite often means we’re not taking them to basketball or to all these other little activities that other children can get into.
So by the time we get our kids to prep in primary school, us parents are tired! And when I saw the behaviour of other kids not understanding my son, when we parents are trying to get our kids socialised and trying to have them change and ‘fit in’, I could see that I couldn’t control that or make that happen quickly enough for my child.
He is really starting to fit in now, but it took years and there is still work to go, there always will be. But I realised I have more control over my child’s peers and what they were thinking and what they could say. I had more control over his environment and helping him that way, by way of my book, than the years of therapy that he will need. What I’m saying is for once, just for once, let’s take the focus off our kids with Asperger’s ‘improving’ and work on the others.
MS: What has been the effect for Philip?AC: Immediately after disclosure he was a lot calmer, because he felt understood. He knows that peers now know why he behaves the way that he does, and that they want to help him. One time, before disclosure, there were all the children lining up and not one wanted to hold his hand in line. I heard a little boy say he didn’t want to hold hands because Philip was annoying, and I said “please could you just told his hand”. And he said “no I really don’t want to”. Heartbreaking, just heartbreaking.
Please let me explain that of course I understand this can happen to any child at any time. But what needs to be said is that Asperger’s is pervasive, that is, the holding hand incident is just one of probably 20 incidents on that day for my child. For example: the noise level in the classroom may be too loud for him to do his work, someone may have rub passed him in the corridor but it would have felt like a punch to him, he may not have been able to catch a ball in sport as he is a little uncoordinated so he would feel disappointed with himself, someone may have smiled at him in a funny way that he couldn’t read and therefore it may upset him for the day…the list goes on.
Let me say also that teachers are amazing. They are absolutely amazing, but they have 26 other children under their care! They are not going to notice all these things that as a mother, on volunteer duty, you notice.
So, after the book was read and disclosure made, I remember one gorgeous little girl coming up and pulling Philip’s arm to pull him in line and help him, and wanting to include him, because she understood, after the book,“he is not doing these things on purpose to annoy me, and we need to help him”. She was so insistent on having him as her line partner, she was almost dragging him. He was stumbling as he was being pulled by her, he couldn’t keep up. There are no words to describe how I felt that day.
MS: There’s a key word here: disclosure. How do you make the call? What is your counsel?AC: Look, there may be no need to disclose if the child with Asperger’s fits in with peers, and doesn’t have social or other problems. That child may well sail through school life and beyond without any complications or issues as their behaviour doesn’t set them apart from peers. We tried to fudge it like a lot of other parents of children with Asperger’s do, in not disclosing. So, for the first six months of prep we thought we’re not going to tell the parents and we’re not going to tell the classmates he has got Asperger’s. He’s having therapy, he’ll be okay. And he was not okay. And the kids did notice and parents noticed. And it was just awful.
So, together with the principal, we decided to hold a disclosure session and invite all the parents at the school to say “our son has Asperger’s and this is what we’re doing about it and this is what it means”. And that was great. We had about 20 parents attend. But one of the questions from a parent was “this is all good and we understand this now, but how do we explain this to our child?”
So the school and I looked for other resources and couldn’t quite find anything suitable, and six months went on and I jotted down some ideas for a book. When my little boy started grade one, I could see the same things happening over again with him being excluded etc. I mocked up a copy of the book, and wrote a letter to all his classmates parents to disclose and let them know Philip has Asperger’s and included a little mini copy of the book that was going to be read in class.
And when I sent that letter with the mini book, the following day I had a couple of mums coming to me teary-eyed saying “we didn’t understand, we did not know that there was a problem, we just thought that he misbehaved. Now we understand and now I’m telling my child to play with him and now we know what to say to my child to help yours.” So it was just overwhelmingly successful.
MS: That must have been a good feeling.AC: It was all a bit hazy, because it is a big clash of emotions – suddenly having people be supportive when you’ve been unsupported for quite a long time. It was overwhelming.
I have to say though, everything lined up for us at my son’s school: teaching staff, parents and the school community were very supportive. Very many things need to line up for the roll out of the book to be successful, and I can’t guarantee the same successful outcome for all that use it. But what is the alternative if the child with Asperger’s is not understood, being excluded and/or teased? What if there’s lots of “whispers/gossip” in the school yard about your child? I met it head on, and I like to have faith that if people understand and are educated about it then they’ll come through for the child.
MS: How is the book going? How many schools are using it? What is the outlook? I know you have some international interest. I know that you’re looking at perhaps another version for older schoolchildren. What is the situation; what is the outlook?AC: I launched the book in August 2012, and that was very successful and I have sold to many schools and government organisations and parents. I have been excited about that, but at the same time it’s very much in its early stage. It’s not happening quick enough for me. So I wrote to Premier Ted Baillieu to meet with him and see if I could have the book included/recommended as part of primary school libraries – the resources for teachers section, since there is pretty much at least one child with Asperger’s in every school (diagnosed or undiagnosed).
Schools need help with this, and my book is a pick-up resource that schools can show to parents for consideration. Premier Baillieu referred me to Hon. Wendy Lovell’s Adviser and my colleague and I have met with this adviser and I feel really supported from that office.
Parents of children with Asperger’s, where the children are now in secondary school, have told me that if my book was included in their primary school’s library, and shown to them when their child started school, that they would have made the decision to disclose and it would have made things so much easier for their child. It is crucial to understand that disclosure can only happen with the parent’s permission, and only if the child themselves understands they have Asperger’s. I’m not saying my book should be part of an essential curriculum for schools, again, I must reiterate that permission from parents must be sought and disclosure driven by parents. But what I am saying is that if the book is sitting in the school’s library, and parents were made aware of it, they could better choose if they wanted to disclose or not, and know that there is in fact a resource to help.
I know the Premier’s office is getting a bad run at the moment with schools, but after having that meeting with Hon. Lovell’s adviser, well that was promising and gives an indication that the office is interested in helping.
As part of my book launch, I invited many anti-bullying organisations, since this book helps acceptance and understanding it does fit part of the anti-bullying movement.
Crown Princess Mary is the patron of the Alannah and Madeline Foundation and other anti-bullying associations and I thought I would write to Princess Mary and send her a copy of my book. Just a few weeks before Christmas I received an email from the Princess’s Foundation Director saying that the Crown Princess has looked at the book with great interest and they have passed it to the Danish Ministry of Children and Education.
So my goal with that is to translate the book into Danish and get it in e-book format so that it can be easily shipped and have copies over there. I have a representative in the US that is showing it to clinics and they are excited about the book there. And I have been approached to write a version for secondary schools.
The feedback I’ve had from teachers and parents of secondary school students is to write a version for secondary schools, and use exactly the same language/text in the book but change the illustrations. Teenage kids with Asperger’s talk too loudly, they stand too close, they don’t know how to stop talking obsessively about their topics. My book fits the bill. I Use the same language for this age, but just change the illustrations.
MS: So this could actually snowball, and people need to have confidence in your credibility. You have said a couple of times you’re not an expert, but I would dispute that in the sense that you are an expert through personal experience, you are highly educated in teaching and education and you are an accomplished public speaker. So they are credentials. But what endorsements have you had for the book?AC: I worked with a psychologist with all the behaviours in the book, and she endorses it as a resource where the child is being excluded through the child’s behaviour in school. She is quite excited about the book and the change that can occur from its use.
I have had different leading people in the field support it. I showed Tony Attwood my book, he really liked it and my book was just recently showcased on one of his websites.
MS: Just before we go on there, can you please talk a little bit about who he is?AC: Tony Attwood is the leader and world expert in autism spectrum disorders. He is very highly regarded. He is booked many years in advance for his seminars and tours worldwide.
It is very hard to get an audience with him, and I managed to get that one of the last times he was in Victoria, for which I was really grateful.
MS: Another key word that comes out, looking at your work, is collaboration. And you’re talking about principals, teachers, students, parents, etcetera. Can you expand on that a little please?AC: That is something that is tough for parents and schools. It’s tough for parents and specialists. And it’s tough for the schools and the specialists. I believe needs to be more of a case-managed approach for children on the spectrum.
Quite often they will see a psychologist from one clinic and an occupational therapist from another clinic, and the principal and the teachers and not everyone is across what’s happening. Sometimes the parents don’t have the capability or the time to get everyone across what’s happening. This collaborative approach means that everybody has to work at it, and especially the parents have to keep pushing and managing things.
This case-managed approach is particularly important for me, so much so that I am running seminars with a team of leading specialists in Melbourne – a psychologist, an occupational therapist, a speech therapist and a drama and social skills specialist.
The five of us will be running seminars throughout the year on different things like bullying, pragmatics and speech therapy, with OT working as a team, and in disclosing the diagnosis, in psychology and managing the stress levels and anxiety and how the whole team can work to bring that together with the school and the parents.
I am very excited about the seminars because according to our research there are no such seminars currently on offer that brings all the specialists together.
MS: How do people find out more about those seminars and perhaps become involved?
AC: They are called “Special Little People Seminars”, and people can find more information at speciallittlepeopleseminars杭州夜网m. That is the website, and there is a special reason why I have named it that. Dr Sophie Banfield, the psychologist who’s on board with the seminars, was one of the first professionals I’ve met with, who speaks from the heart on how special these children are.
I’ve seen many specialists regarding my son for years, and quite often the clinician would sit in the office and talk about my child like he was not even there and it’s in very clinical terms.
Dr Sophie talks about these children with such kindness and explained to me once that “these special little people have it hard; we need to take it easy on them”. Then she explained the word “pervasive” and this is what resonated with me the most. It’s not that these children have a rough time at lunchtime in the playground and then they get back to the classroom and it’s all then good. They are going to get a hard time in the classroom (noise levels, settling down to work etc). As I mentioned earlier, there can be 20 things that happen during the day to upset them. It’s pervasive. These little people can have it hard every single day.
And here is the most important key with my book and seminars. It is the mindset I want to change with teachers and the wider community. Us parents are so worn out and tired and we need people to know our kids are special little people who need help. Easier to think this about a child with two broken arms than a little person who seems ‘mostly’ like a regular kid.
MS: So it’s not a case of just reading the book and thinking right, we can check that box. This is an ongoing thing that can have hugely beneficial effects for the child in question, the peer group, the family and teachers, who have a big load and who may not know really what is going on behind this behaviour. And so all of what you’re doing can help relieve stress across the board.
AC: Absolutely. I know that teachers are absolutely stressed and have all the extra work of the NAPLAN testing that they have to do. They have children with issues, issues that weren’t around 20 or 30 years ago that for different reasons are present today. Teachers are working long hours, attending meetings, excursions and camps outside of regular paid hours. They are instructors, counsellors, negotiators, carers. These professionals even clean up when children vomit in the classroom! I mean – they do everything!
Teachers are so much more busy and feel more undervalued than in the past and what I say is that strategies to help manage the behaviour of the child with Asperger’s will also help another four children in the classroom who have disruptive behaviour.
I am very much a believer in Pareto’s 80/20 rule – 20% of the children in the classroom are going to cause 80% of the issues. So if you have a classroom of 25 students, there are going to be five children at the beginning of each school year to the end of the year, and it’s probably going to be the same five children, who are going to be disruptive and need the most attention and cause the most disruptive behaviour.
You could have an unsettled child from a broken home, you could have a child who has not eaten properly in the morning, you could have a child that stays up late at night, you could have a child with Asperger’s and then one who is hyperactive, extra energy to burn. Highly likely there are at least five children that would need extra attention in every classroom.
If the child that has stayed up late at night and just isn’t interested in doing any work and so starts nudging and bothering the other children on the table, call them over and cut their work into thirds and have them just to do a third of their work. They go back to the table and then report back once that section is done, give them a special sticker. That child may then need a bit of time out on the mat, read a book quietly for five minutes, then go to the teacher to collect the next bit, and go finish off that other section of their work. The alternative is for that child to remain at the table, not knowing how to start their work, they feel irritable and irritate others around them. The threat of staying in at recess or whatever, for being disruptive, is not going to help that child at that particular point. In fact, it could just make the child feel worse – it would make me feel bad if I couldn’t go on my coffee run if I was having an off day!
You’re looking at quality, not quantity, with these five children, but the quality and the quantity for the rest of the children will be there because you are being proactive with the disruptive children.
Behavioural management strategies for the child with Asperger’s will fit across the board for the rest of the classroom. My book, along with strategies from the seminars, emphasises this all the way.
MS: Amanda we are nearly out of time. Can you please talk little bit about you and your motivation, which is perhaps a silly question because it’s evident where you’re coming from. But you are a passionate person, you are an advocate and you are an activist. What drives you?AC: I think about my little boy entering a secondary school of 1500 to 2000 students, which is very different from the beautiful, gorgeous little school of 250 students at the moment. I think of the few times I was bullied or teased at high school – and I was a pretty regular kid. Then I think of him and his eccentricities and quirkiness and worry that he will stand out and be bullied.
There is research that shows in high school, 80% of children with Asperger’s are bullied and 25% of those children are physically hurt. That frightens me. My goal is to get my book into as many primary schools as possible.
If we can get as many children in junior school now using the word Asperger’s like asthma, nut allergy and all those other sort of words as they are going through primary school through to high school, my little boy in high school will have a posse, peers around him, so that if he is bullied or pushed around he’ll have a group that will say “leave him alone, he’s just got Asperger’s, he’s quirky, he’s fine” and will help protect him. That’s the only way I can help him in high school that I can see.
MS: The final question to every guest in The Zone is what is the hardest thing you’ve ever had to do.
AC: I think there are two things. Is that okay?
MS: Two things? Fine.AC: The first thing was taking my little boy into school before we disclosed. Every morning I would be a bag of nerves dropping him off, wondering if the teachers were going to put the strategies into place, if he was going to be bullied that day, if he would settle, if he would trip over because of his clumsy gait. I had so many worries just going into that school and taking him in everyday.
The second thing – the day after disclosure.- walking into that schoolyard trying to hold my head high wondering if I had done the right thing disclosing and wondering what the response was going to be and knowing that my very private life – I have always been a very private person – was suddenly made public and that I had no choice. I had to for my little boy, and I needn’t have worried about that because it had such a positive outcome.
So that was one period of my life that was the hardest thing – just wondering what was going to happen with my little boy before disclosure and then after disclosure.
The second thing, which we have not touched on at all, but is from way back, personal experience, when my sister had leukaemia, and going to visit her at the Royal Children’s Hospital. She only had it for nine months and I would go into that ward and look at the other children through the rooms and go and visit her and that was hard.
I still think of that today, and even though she’s passed away and she’s gone, that ward is still full of children who are sick with cancer and some of them won’t recover – of course, many of them do but many of them don’t. And that was the hardest thing, visiting someone who was dying. That was very hard and had a profound impact on me.
MS: What a terrible thing. Thank you for your time, and I wish you and your son and all the others out there a very, very good future and a future to which you’re clearly contributing in a really positive way. Good luck and thank you very much Amanda.AC: Thank you Michael.
The original release of this article first appeared on the website of Hangzhou Night Net.