Autistic Children and Young People with Elaine McGreevy – Universal Learning with Saj Mohammad
Please Note: This transcript has been slightly edited to improve readability.
Saj Mohammad: In this series, I’ll be talking to professionals inside and outside education, as well as parents, carers, and learners themselves about their experiences of inclusive practice.
I’m on a mission to discover as much as possible about inclusion, because I’ve been a learning support practitioner for over six years and I’ve come to realise that many of the adjustments we make for students with additional needs could benefit all learners. For example, making things easy to read helps dyslexic students, while using clear language can benefit autistic learners. So, shouldn’t inclusive practice be part of our normal routine when planning teaching, learning, and assessment?
In an ideal world, I’d like educators to stop thinking about inclusive practices as another chore to be added to an ever-expanding workload. In actual fact, I believe that inclusive practice can ultimately make life easier by making learning more accessible for all of our students.
In this edition of Universal Learning, I’m talking to Elaine McGreevy who is a speech and language therapist. Many of the children and young people that Elaine has worked with over the years are autistic and she has become a powerful advocate for the rights of autistic people to be treated fairly and with dignity.
We start our conversation talking about how Elaine became such a passionate advocate for the rights of the autistic community. She raises the fact that one in five autistic children are denied education which stands in sharp contrast to their peers who are not autistic.
We also talk about how practices in educational settings may be well-intentioned but are discriminatory. For example, awards that encourage high levels of attendance may be seen as a good form of motivation. But for neurodivergent students or those who have medical issues, these awards may realistically never be achieved.
The debate around ABA or Applied Behavior Analysis also comes up in our discussion. This is a long-standing form of behaviour modification that is used with autistic children and is increasingly seen by many autistic people as a form of human rights abuse.
There are many myths and misconceptions about autistic people and we touch on some of these including the myth that autistic people can’t feel empathy. We also look at why terms like spectrums or high and low functioning are no longer seen as useful.
We also talk about some of the research and theories around autism and why celebrity academics such as Simon Baron Cohen are not as well-respected in the autistic community as actually autistic theorists like Damian Milton.
Online gaming has proved to be a good way for many autistic children and young people to form communities and we talk about some of the implications of this, especially from a safeguarding point of view.
We move on to discuss the idea of co-production and how educational settings need to think about ceding some of their power and find ways to involve parents and carers more with supporting learners with additional needs.
We conclude our discussion talking about how supporting neurodivergent learners with additional needs may be simpler than we think. The vexed issue of learners wearing coats and hats in classrooms also comes up. While rules may reflect the idea that Ofsted expect students to look like they’re ready to learn, for some learners wearing a coat or hat may be a much-needed coping mechanism.
We also discuss how the built environment can make life difficult for learners with additional needs. But if we design things right and think about the needs of the neurodivergent, we can find solutions that work for everybody.
Hopefully Elaine answers many of your queries about how to best support autistic children and young people. But if there’s anything else that you want to know more about, I am planning to answer questions from listeners about inclusion in an upcoming episode. So do feel free to get in touch with your questions via our website at UniversalLearning.education
So, this interview was recorded using Zoom and the quality is not always the best. However, you can read a transcript of this and every episode on our website UniversalLearning.education where you can also find links relating to each episode to help you discover how you can put inclusion into practice for all of your learners.
Elaine is an eloquent advocate for the rights of autistic children and young people and I learnt so much from speaking to her. I hope you enjoy listening to our conversation.
Elaine McGreevy: My name is Elaine McGreevy. I’m a speech and language therapist. Until the 31st of March there, just passed, I worked as a clinical lead speech therapist in the health service here in Northern Ireland. I’ve been a speech therapist for 25 years. Most of that time, I have worked with and for autistic children and young people and their families.
Saj: What was it that led you to become a speech and language therapist?
Elaine: When you’re 17 years old, it’s really hard to know what to pick. You want to go to university, I suppose I’m a very practical person. I am a vocational person, and I was always interested in education, but I didn’t think that I wanted to be a teacher, but I knew that I wanted to be able to support children or young people in their development.
I came across speech and language therapy randomly within a university prospectus. I thought that would actually be quite interesting, “I think I could do that job,” so that’s what I did. Here I am now.
Saj: That particular degree that you did, was that a very specialist degree that was very much focused around getting you into that job?
Elaine: Yes. You’ll find that allied health professions really, physiotherapy, occupational therapy, speech and language therapy, radiography, they are all very specific degrees to lead you towards being a clinical practitioner. The degree was clinical speech and language studies at Trinity College in Dublin. Across the UK, there are speech and language studies degrees, probably in most universities now.
Saj: In your career, you clearly have a real passion for supporting autistic people. Were there any experiences in particular that led you into focusing on helping autistic people?
Elaine: Again, I suppose these are things in your job that you fall into. Early in my career, I had the opportunity to work within a child development service. Then, I found myself mostly working with autistic children, young children. I always enjoyed the work. I always find it interesting. I find the children purely delightful. What made me passionate was injustice actually, I suppose, and trying to help children participate in their everyday environments, be that education or home.
Sometimes, I was facing barriers, particularly in education where the autistic child was maybe viewed as a problem in the class. Then, I felt that I was gradually taking on that role in advocating for this child’s right to be included here and for them to have the accommodations. Gradually, over time, that just became a burning passion, a desire that these children should have better support, better understanding.
Also, looking at myself then, I felt totally inadequate as not the right speech and language therapist for these children because I didn’t know enough to advocate for them. That’s actually what took me to the social media world where I said, “I have to learn from the experts. I have to listen to autistic people. I need to know more to be a better advocate for the children that I’m supporting.”
Really, when I started to read about autistic experience from autistic people, and I started to learn from autistic researchers and autistic advocates, then I just became so much more fired up in my passion and my determination to actually correct some of the false narratives out there and to really advocate for equitable support for autistic children and young people. That has become just such a burning passion that it’s just taken me over.
Saj: I think it’s really interesting that you used the word injustice. There have been a lot of advances we could say in the area of rights or human rights with things like the Equality Act, with the Care Act. Would you say that we still have a situation where a lot of particularly young autistic people really have faced a lot of barriers to access the services that they have a right to?
Elaine: Yes, I really do. I suppose I will have to start with the fact that too many children, young people, and even young adults are in the seat of behavioural intervention such as ABA and positive behaviour support. These approaches fundamentally deny the person’s right to autonomy, to dignity, and to respect. When is this going to stop? I feel that enough autistic people have explained now in great detail about the trauma, that these have caused them the denial of the personhood, that this has led to a confusion in their identity and led them to be vulnerable to future abuses as well.
When are we going to stop? When is this going to be just consigned to the past? I feel that’s the first basic human right that autistic children, young people in these therapies are really being denied. Then, the next thing, of course, is speech and language therapists, their rights to freedom of expression in whatever way, you need to give or receive information. Autistic children and young people with communication difficulties may not always have the right to the most accessible form of communication for them.
Of course, in the UK, I would say that there is growing recognition that autistic non-speaking children can actually communicate if they had access to, say, communication apps or assistive technology, but that’s not freely available. It’s not freely available early in a child’s life. You always have to go through the tried and tested other methods before you can prove that maybe this technology would actually be revolutionary in helping that non-speaking person express themselves.
In lots of ways, I feel that our autistic children and young people probably don’t have the same options to express themselves in ways that are authentic and natural for them. Lots of autistic people will explain that they have to translate language into a different form of communication, into a visual form of communication or that they actually need to be able to write it rather than speak it.
I don’t think that our society, our education, or even our homes are set up to actually accept that oral communication is not the only way to express yourself, and that puts a huge burden on autistic children, young people who are cognitively labouring over so much of their day. Then, I suppose the other one I would think in terms of human rights is the right to an identity and the right to a culture.
We recognise that autistic people have their own autistic culture, their own language, their own body language, and their own kind of norms as such for how they interact with each other. That’s not really accepted. Autistic people are often denied their identity. They’re told to mask, to cover up to look and act like neurotypical people. In many ways, that’s denying them their identity, denying them access to their culture.
The biggie, the right to education, so how many autistic children, young people, other neurodivergent children as well, children with ADHD, for example, how many of those are not in school? How many of those are on part days, on a reduced day, going home early? I think it’s one in five autistic children might be excluded from education. Why? Why is that? That’s not the child’s fault. That’s their basic right that they’re being denied. I’m feeling that injustice quite sharply now. Then I think about health services for autistic children and young people and the right to appropriate, say, for example, mental health services or speech and language therapy services. Sometimes, children don’t access these services because they’re deemed as not able to engage, not able to come to the appointment, and guess what? Not able to communicate when they’re in the appointment.
Again, denied access to services that really would help them because in some way they’re blamed for their difficulties. Their difficulties themselves are the reasons why they can’t participate according to the services, rather than the services looking at themselves and saying, “We need to change. We are the barriers. We need to do things differently here to actually meet these genuine needs of these children and young people.”
Another one. There’s so many. The right to protection from discrimination, ableism. Ableism goes right through our education and health and probably most of society. If I just think about an education, school attendance awards, getting an award at the end of the year for going every single day to school, that is ableism. That denies the child at home who cannot go to school because they are so distressed, and school is a distressing place for them, but they want to go, they would like to win that award, they’ll never win that award.
That’s so harmful to them. That’s discriminatory practice. School trips, where the child with the challenging behaviour can’t go on the trip or the parent must come. That’s discriminatory practice. That is ableism.
The other one I want to talk about as well would be the focus on, again, oral communication. A young friend of mine was talking about an English lesson that she was having, and they were studying how to be a good public speaker. For example, you would have to use good eye contact, good body language, and you would have to use a certain type of fluency. You wouldn’t want to use too many fillers, and stopping and starting. I said to her, “I’m really sorry to hear that that’s what you were learning in school,” because that sounds like ableism to me.
I’m thinking of the child in the class who is selectively mute. That child immediately feels like they’re a failure. I’m thinking about the child who is dyslexic, who’s going to stand up and make a speech. That child is going to feel like they’re going to fail before they even start. Never mind the autistic child who actually have to stand in front of the class with the spotlight on them, completely overwhelmed, and who has different body language, who has different way of speaking, a different type of tone, who might find eye contact very difficult, immediately is discriminated against.
They’re never going to get the top mark in that because– and that’s presented as the most preferred way and the most successful way of communicating. I think these ableist practices are discriminatory, and they do much damage to the self-esteem and the self-worth of our young people.
Saj: You mentioned ABA. For people who aren’t familiar with ABA, as I understand, it’s a very structured type of intervention that we could say is ableist. We could say it’s a discriminatory model that basically tries to normalise the behavior of the child.
I haven’t looked into this debate in great depth, but I have sort of seen two sides of the debate on social media. One is very much that this causes a lot of trauma for the children, young people who have this therapy. Then, there’s another voice that you see sometimes of people who say, “Well, if it’s done quite properly, it’s valid.”
Elaine: The good ABA.
Saj: Yes. For those who aren’t familiar with this debate and with ABA, how do you see this debate?
Elaine: I suppose that good ABA is in response to challenge. Yes, it’s not like we give them electric shocks anymore, even though I think that’s still on the cards. It’s not like we’re using punishment. It’s much softer. It looks friendly, it looks playful, but actually underneath it, the same methodology is used. Basically, what ABA is is that a powerful person in that child’s life enters their life, and they engage with them, and they groom them. They basically engage in all the things the child likes. They find out all the child’s interests, and the child then associates this person as being a positive person. That’s called pairing. It’s an actual ABA technique.
Then, at some point, the powerful person holds all this person’s passions and joys to ransom. They will then say, “You can have these if you perform this.” Basically, everything that the child then does is externally controlled by this powerful person. Whether it’s good or bad ABA, that is coercion, that is external control of the person. The very things that they need to help them regulate, to help them, to help them connected are held as a ransom. That’s really quite traumatic.
Also, I suppose I have witnessed some ABA sessions in the past as a speech and language therapist. I suppose the one thing that’s always really genuinely missing is a genuine relationship, because what I’ve witnessed, is a therapist with a particular– I don’t want to say a therapist, a technician with a particular list of targets and drills that they have to fly through and checkbox achieved, achieved, then achieved, achieved, achieved, then achieved these discrete trials.
This therapy is done onto the child and performed on the child, but actually, there’s really no relationship, there’s no connection. What must that feel like for a child day after day, hour after hour when all their passions are held at ransom to them, when this person comes into their life and makes them perform so that they can get access to the things that they need. I think that is so relentless, and I feel it’s dehumanising.
Saj: A lot of this sounds deeply troubling from an ethical point of view. Does ableism explain partly why something like ABA is allowed to continue and it isn’t investigated for its efficacy and its possible traumatic results?
Elaine: Well, I think there’s multilayers to that. I don’t know if I have the best answer, but of course, ableism and stigmatization of autistic people do contribute to this. When a parent finds out that their child is autistic, recently this happened to me, a parent contacted for some speech therapy, and she said, “Our community speech and language therapy service said they couldn’t help us. Our child had stopped speaking because another child was born in the house. We went on Google, and we read, ‘You will lose your child, you must intervene early. The brain is very plastic. You must intervene early before you lose your child to autism.'”
I was really quite shocked to realise that that type of narrative is so accessible to parents. These parents who desperately loved and cared for their child then googled again, and the only answer was ABA. Through stigmatizing information, false narratives and parents’ fear and a society that does not value neurodiversity, does not value deference, actually, never mind the money, the big autism industry, that actually ABA is an industry. That’s one of the reasons why I think it’s very hard to abolish it really because it makes lots of money for lots and lots of people. In the United States, there was a TRICARE report in 2020.
That was, the American government paid for ABA for all the children of service personnel in the army. They actually commissioned a report to look at, “Well, is this effective? All these millions and millions of pounds of money, is this making any change?” They found out, on average, no. They actually found out, it actually is harmful, but unfortunately, that hasn’t led to ABA being abolished in the United States. I can only think that the money is a reason why it is not consigned to the olden days yet, so there’s multi reasons.
Saj: The self-interest, if you like, of the ABA lobby?
Elaine: Yes, I think so.
Saj: I’ve worked in education for quite a few years now, and unfortunately, I’ve come across a lot of people who have some quite bizarre ideas about autistic people, and there still seem to be quite a few myths and misconceptions. In your view, what would you say are the most persistent or pernicious myths and misconceptions that we really need to get rid of?
Elaine: Yes. More indeed. I suppose the first one and the obvious one is that autistic people lack empathy. That’s so offensive. Just because autistic people have a different way of processing information and different ways of responding, non-autistic people have assumed they have a lack of empathy. In fact, autistic people, let’s just say have buckets of empathy and hyper-empathy, so much empathy, it actually hurts, and a great empathy and affinity for nature, for animals, and for other people.
Really, that’s the first one, and that has been led out of the flawed theory of mind. We still have a lot of issues with people believing that autistic people don’t understand the thoughts, minds, and feelings of other people. That really causes a lot of harm. I think as well that there is a myth or a belief that autistic people are violent and aggressive. I think that’s partly due to, unfortunately, some of the most distressing times in autistic people’s lives being probably shared, maybe even on social media or some of those headline stories about some very unfortunate thing happened, and this was an aggressive, violent autistic person and then that story then just perpetuates a myth.
In fact, most of the autistic people I’ve ever met are affectionate, deeply caring, and very kind more often, and we do know this, and the victims of aggression and violence and bullying and victimisation. Somehow, the bigger myth gets listened to that autistic people are violent and aggressive, which really isn’t, often quite distressed. To think that autistic children don’t grow up, that somehow autistic adults don’t exist.
I think there’s a lack of understanding that autistic children grow up to be adults, and that they change and that as you are now isn’t as you are in the future, but you will have different needs. I think there’s something about treating autistic people in an infantile way, patronizing way, and I think that’s fed out of a lot of myths about autistic people that they don’t actually, a belief that autistic people don’t want the same things as everybody else. Of course, they do.
High-functioning myth. This whole myth about high-functioning and low-functioning, what grade of autism are you? Are you low-grade or high-grade? Determining anyone’s functioning is a value judgment placed by non-autistic people on a disabled person and their worth. Also, when you say that someone is high-functioning, it means that you don’t see their needs, you don’t meet their needs, and you don’t give them accommodation, so they actually struggle more.
When you say that someone is low-functioning, you deny them a future, I think. You deny them the opportunity to access the broadest education, to access opportunities, and to access the right to an autonomous and self-determined life because most of you see them as not being capable of having thought of their own and not being capable of making decisions that are right for them.
Male and female autism myth. That’s a big one, I think. There’s no such thing as that but honestly, doesn’t that conversation go on all the time about female autism? I suppose the truth is there’s a great diversity in autistic presentation. The whole male, female autism is so exclusionary. It excludes people who are gender non-conforming, people who are non-binary or trans people as well. I think those things don’t help us.
I think neurotypicals or the neuro-majority are determined to work in stereotypes and determined to work in false narratives, maybe through complacency, maybe through just a lack of taking a bit of extra time to listen and to learn and to reflect and to change. Those are the key ones I wish we could do better on.
Saj: You mentioned, as you described, the flawed theory of mind, I’m a learning support practitioner now, and I work with a lot of different types of learners. I can’t be an expert on everything and certainly with the teachers or lecturers that I work with, I’m not expecting them to be experts on everything either. A lot of what we encounter sometimes in relation to things like autism are often through the mass media. You have people like Simon Baron-Cohen popping up in the media and dominating the popular narrative. As somebody who works in the field, how do you feel about the work of people like Simon Baron-Cohen?
Elaine: Well, it fires up my sense of injustice, really it does. I think he is recognised as a world leading expert in autism research by non-autistic people. He’s not the leading expert that autistic people are looking to for answers, but unfortunately, as you say, he dominates, and if Simon Baron-Cohen says it, then it must be true. This has really done quite a lot of damage, some of the work that he has done, and still does perpetuate some of these myths. It’s not helping us move to a better inclusive society for autistic and neurodivergent people generally.
Saj: As you say, you mentioned the theory of mind, what would you say in particular is flawed about his theory?
Elaine: Whatever you really understand when it was developed in the ’80s, all those years ago, the Sally–Anne test, the test of, Sally–Anne puts her marbles in a little basket, and she walks out and then her friend puts them in another basket. When Sally–Anne comes back, where will she look for the marbles?
That was the test that was used with 20 autistic children, 14 children with Down’s Syndrome and 27 children who were neuronormative, so a very small sample. Based on that very small sample, I think it was something like 20% of the 20 autistic children got the answer right as according to the researchers, but basically what it didn’t take kind of was autistic perception, autistic processing, autistic cognition. Viewing the children’s responses to the research as it was presented, they didn’t understand that autistic people are going to be quite literal. They didn’t understand that autistic people have that strong sense of injustice and go, “Well, okay, Sally–Anne has come back. I’m going to need to tell her that the marble is in that basket, don’t be looking there, it’s over there.”
If they had actually done what they should’ve done, which is ask an autistic person what are the important things that we need to consider when we’re designing this research and when we’re interpreting this, what’s your interpretation of it from an autistic experience, then we would have maybe been able to understand that research better. That was such a small study, and they made such big sweeping statements that were just gobbled up by people like myself and still to this day, based on that such small sample, people still believe that autistic people lack of theory of mind.
Saj: Interesting. You said that for autistic people, Simon Baron-Cohen is not the figure that they are looking to. Who are the theorists or the researchers autistic people are really looking to?
Elaine: Well, of course, I’m a big fan of Damian Milton. In 2012, he proposed the double empathy theory and the double empathy problem theory. Basically, he discounted the theory of mind in 2012 saying in fact, if autistic people cannot understand the thoughts and minds and feelings of non-autistic people, well, it’s true, non-autistic people cannot understand the thoughts, minds, and feelings of autistic people. It is a double problem. It’s a shared problem. Really, that research was revolutionary. I still think that it’s still not even placed front and center of the mainstream research narratives, but I’m really a big fan then of Professor Noah Sasson at the University of Texas.
He and his colleagues have really done huge work around building on Milton’s work and looking at the double empathy problem, looking at the bidirectional communication problems between autistic and non-autistic people, and much of their research has actually really strengthened that double empathy problem as well. I think that Dinah Murray, I can’t think of the other people’s names now, but she’s one of the people who has proposed the unified theory of autistic cognition, which is monotropism. This is an autistic-led cognitive theory for why autistic people really think and act and communicate in the way that they do.
Monotropism is for your cognitive efforts to be kind of focused on one or very few interests at any one time so that you are interest-driven and that you are, rather than polytropic attending to multiple things at any one time, you are likely to be more zoned into one of very few interests. That really explains why autistic people will be, more tendency to be focused on one thing at a time, will have difficulties stopping that flow to move and transition to something else, actually they may info dump and talk and give lots and lots of information in a big chunk and then hand the conversation back to the other person.
For me, that monotropism theory is really wonderful, and it was developed by autistic people. Other people who I really do listen to autistic people, maybe, obviously the University of Edinburgh, Catherine Crompton, she produced empirical research to show that communication between autistic people is not impaired but you only reach problems when you’re communicating across the neurotypes, autistic and non-autistic, and obviously that, and Sarah Cassidy as well, who has built on some double empathy work, looking at mental health.
Those are the people that really do educate me. Monique Botha as well is doing some good research at the minute. Amy Pearson is an autistic researcher who produced research on conceptual analysis of autistic masking along with Kieran Rose who is an autistic advocate. Those are the people that I learned from and teach me every day.
Saj: Fascinating. Sounds like there’s a real wide world out there, different researchers doing some innovative work.
Elaine: So many and I could actually say more, so I do apologize for anyone I’ve missed out there because I’m thinking of others who are all equally good too.
Saj: Well, I’m sure they all cite each other, so if you started looking into those theorists and researchers, I’m sure people will eventually find their way to the others. I just want to refer back to something you mentioned earlier. When you were talking about human rights, you were talking about the right to identity and the right to a culture. Obviously, the internet has been great for lots of different communities, enabling people to sort of find each other and then form meaningful relationships and cultures online.
Would you say that in your experience that young people, especially as we using the internet and things like this, really developing their own culture and identity as autistic people?
Elaine: Yes, I would say so because I think that social media and the internet has really helped the disability movement, neurodiversity movement, it has provided a way for autistic people to connect with each other in ways that are accessible to them and communicate in forums that are accessible to them. For young people to find a safe place online where they can actually connect with people with same experience, where they’re automatically accepted, where there are no barriers, no judgment, where they actually can belong. That’s hugely important too.
We do know that autistic teenagers experience quite a lot of loneliness, but so many places are inaccessible for them or there are not enough forums for them to meet people like themselves where communication is easier and just more enjoyable. Having access to a safe online place has created this forum for friendship, connection, actually for affirmation, for actually meeting other people like yourself and knowing that you’re a totally valid human being as you are.
Giving a young person through looking at another young person or listening to another young person, the confidence to say, “As I am, I’m fine,” to actually be able to listen to somebody who is the same as yourself speaking up and advocating for themselves about what they need and that they have rights and that they can actually say what their accommodations should be.
I don’t know that there are enough places where young autistic people can actually access that. It’s good if they can find it online, I suppose I’m thinking of Spectrum Gaming. Andy, I can’t think of his surname, but he has recently launched an online community for autistic children and young people, Spectrumgaming.net, I think it’s called. I think that this is a fairly safe place for autistic young people to meet, connect with each other, and to learn more about their autistic identity and autistic culture, and a place where they’re totally accepted.
I think there should be more of that. Again, obviously you have to be cautious around safeguarding. There are lots of scary places online as well. I think that there does need to be a little bit more work in creating those places for young people.
Saj: Interesting. Yes. When it comes to developing the kind of environment in education that’s going to make young people feel safe and allow them to sort of thrive. Would you say that maybe the voice of parents and carers is not listened to enough sometimes and that maybe educators need to think about more of an approach of a co-production, where they listened to the voice of parents and carers a little bit more when they’re thinking about how to create that environment that autistic children or young people can really thrive in?
Elaine: Yes, I really do and I suppose that’s probably one of my earliest experiences of sensing that, injustice or the lack of willingness to be open to other people’s opinions about the education of the child and I even think to this day, I have witnessed and been in parent-teacher meetings or parent liaison meetings with teachers and I feel there is a power imbalance. Co-production is an answer to this power imbalance and co-production, I’m really quite familiar with it in the health service world because that is very much what we do, or what we aspire to do. In the world of PPI, public and patient involvement, co-production sees the importance of power-sharing. I think that’s important for us to try to move that into the education world.
Can we genuinely share power? Teachers, parents, therapists who come in valuing and respecting the knowledge from different sources. How do we do that? How are we genuine and authentic in valuing and respecting the voices from different sources, different experiences, the parents’ experience, the therapist experience and the teacher experience. How do they be given equal value, and relationship building to genuinely be co-producing, and to improve things for an autistic student, we must have relationships that are open, honest, and are truthful. Where you really can say what you need to say, but also in a respectful way, but also that you will be less than two. How do we achieve that? Because I think it’s a really valuable direction to go. I’ve been reflecting on this a little bit lately and I suppose the things that I think about, all the times I’ve been in liaisons with schools alongside parents, and listening to parents, and sometimes parents might say, you know, while I’m waiting on the teacher to give me a date for a meeting, I had an IEP, but I didn’t even know I had an IEP.
I had a parent tell me on Tuesday this week, they didn’t know their child had a classroom assistant from September. There’s something about us as professionals in education, being much more proactive in seeking parental engagement, in sharing information, providing parents with an opportunity to really sit at the table and say, this is where we are, this is the information that we know we have produced this information in jargon-free, non-technical language so it’s understandable to you, and actually, we want your contribution to be able to help us to shape up this because this is our side of it. How can you influence what we think about that? How do we genuinely listen to parents? What does listening really mean? Is it surface-level?
Yes, yes, yes, we have you here we had a meeting, we ticked the box and thank you very much, we’ll see you in three months’ time, or listening, because we really have implemented what you’ve said, we’ve done something about what you told us. Seeing a parent and I’ve learned this in my own practice as well. A parent who is so frustrated, so angry, challenging to say, “This isn’t good enough,” and rather seeing that parent as a problem, a problem parent, see that parent as holding a mirror up to what we’re offering and saying, “This isn’t right. It’s not right for my child, but I bet you, if you did try to make the change that I’m asking you to do, it would benefit someone else.” That takes courage. That takes flexibility, that takes humility.
Actually recognize that when a parent has developed that strong anger or frustration with the system. The problem is not in the parent, the problem is in the system and co-production would be an answer to that. It really would.
Saj: From my experience working in in post-16 education, we do have a lot of parents who faced years of struggles just to get basic rights to their children. They’re in that mode of ‘we have to be assertive’. That often causes friction because, staff are like, “Well, actually, we’re just trying to help here,” but actually that parent has had so much trouble. I think there’s a lack of insight or empathy sometimes for parents, that actually it does change you.
Elaine: That’s right because the system creates that distress in the parents. Rather than looking on an individual basis, and saying, “Well, me as a practitioner, I think I’m doing a good job.” Maybe where as a whole system not doing what we need to do here, maybe we can change. I think that would defuse a lot of distress and stress all around, if we actually had that kind of equal relationship, the power-sharing, and the parents’ ability to try to influence the direction of support and change that’s needed. It’s not a perfect situation. There are lots of problems with resources and classes are oversubscribed, sometimes there are classes with children with multiple needs, competing needs at all times.
I’m not saying teachers have an easy job or support staff have an easy job at all, but almost don’t blame the parents’ anger, the system is wrong. We’re all stuck in this system that is not serving any of us well. If we became allies together, maybe we could actually start to make some small steps of change, we could make progress together.
Saj: With all of the issues that unfortunately, still persist. I think it’s fair to say that for a lot of autistic children, young people their experience for education is really surviving it, but not really thriving. What do you think we can do in education to really support our autistic children to be able to thrive as much as possible?
Elaine: Yes, well, I want them to thrive, I really do. I see too many children just surviving and some not managing to survive. I think there’s something about getting away from the mentality of this child has special education needs, they need an EHCP or they need a statement of special education needs. “Without these things, we cannot have this child, this child needs a classroom assistant, without this support, we cannot have this child,” somehow that is an immediate block to doing the everyday ordinary adjustments that are free, that do not require excessive paperwork or excessive numbers of professionals coming together to write lists and lists and lists of things that could be done for the child.
Some of the everyday ordinary reasonable adjustments that I think could happen in schools would be first of all looking at creating a sensor-ally safe environment. This takes bravery and it takes flexibility and leadership really. The first thing I’m going to say is can we either turn down the school bell or turn it off or can we find a different way? If you have hyperacusis – auditory over-reactivity – if you’re sitting highly stressed that bell is just like a dagger in your ears and that is something that an autistic student just has to eat. They just have to eat that sensory distress.
They don’t get used to it. It’s just hell, thinking about staggered start times for children who just need to come that wee bit later in the morning, or that need to leave a class earlier before they have to go through the corridors, allowing a student an opportunity to get up out of their seat and walk if they need to. To go to the toilet without having to ask to go to the toilet. Sometimes children who have social anxiety or have communication difficulties will suffer in silence and status because they have to put their hand up or they have to wait to a certain time before they need the toilet. I think that’s, again, it’s a bad ableist practices, and that for me is an ableist practice. No assembly, or forcing children who can’t sit for long in assembly, do we have to? I used to say also there are many times I have witnessed autistic children sitting and they’re practicing the school concert endlessly. I used to say to myself, “I don’t know what the education is here, but they’re getting practice at sitting.”
Is that useful? I’m not sure if it’s useful or not, and offering safe, quiet spaces for young people to retreat to to recharge, recognizing that they need that through their day. They need to plug into a quiet space and offering alternatives to the playground, of course nurture. I think nurture’s really important.
Can we become a more nurturing educational environment? Again, witnessing many is a child being dragged into school by their parent kicking and screaming and screaming down the corridor to be brought into their classroom. I just think that’s a trauma for the child and the system isn’t saying, “Don’t do this that your child is in distress. We need to go slowly here.
We’ve created a little pod for you to get to, get your child to this pod, let your child gather themselves, recharge from that. When they’re ready, they can make the transition to their classroom instead of the undignified, distressing experience of the child going down the corridor.” I suppose I’ve witnessed that a lot. I’m speaking from experience when I’ve seen that I’m thinking we could do better.
Relationships, having really warm, affirming, validating relationships with key people autistic children and young people need to be able to, if they can plug into their energy of their parent. If they’re very distressed being away from their parents, they need to be able to plug into a safe person and that needs to be created for them. It could just be, for example, I remember being with a young boy in high school and this was a very accommodating high school.
Now and again, he just needed to go and see a certain teacher that he really liked and he would take a walk around and he would have a random chat with this teacher in the middle of this other teacher’s lesson. It was accommodated and it was the necessary plugin for that student’s well being. I really appreciated the flexibility from the school to actually say this matters to this child and the teacher himself. He didn’t particularly mind what it was the young person was coming to tell him, but he just knew that the young person needed to plug in and connect, and then he could go back and continue on with his work.
I think understanding as educators that what happens in the school day affects what happens in the afternoon and in the evening and affects even that young person’s ability to go to sleep just because the young person does not appear to have a problem in school does not mean you’re not contributing to their problems in their life and their participation and their wellbeing and taking responsibility for the fact that if the parent says my child is distressed about their homework.
My child can’t sleep because they’re worried that they’re not going to, there’s something happening in school tomorrow and they’re worried about that, that they’re worried about relationships with peers, that there isn’t something that we can do on an everyday ordinary level to reassure that person, to give that person who is masking, literally sitting stuck to their seat afraid to move, afraid to fetch it, afraid to stem. Actually permission to do what they need to do to meet their sensory needs, to create movement breaks naturally for that person.
I think our schools, we could learn more about neurodiversity. We should be educating our students on neurodiversity. The University of Edinburgh is working on this at the minute learning about neurodiversity and schools are developing a program for Key Stage two really, how to teach Key Stage two children about and your neurodiversity and neurodivergent people and differences in communication.
I think we should do that on a whole, in every school because if we know now that autistic communication is valid, it’s not disordered, it’s not wrong, rather than put autistic children in social skills classes, we should be teaching each other about different ways of communicating that there are different styles and each one is valid and we should be looking at our practices in education and thinking about others and is what we do causing autistic and disabled students to feel that they are set apart, that they are made out to be different, that they have these special accommodations, things stuck onto their desk that point them out saying, “Here is the disabled child right here, here is the different child right here. You all get this approach and this child gets a special accommodation.” For quite a lot of autistic and disabled people, that othering is quite stigmatising.
I think we need to be sensitive to how we on a whole school basis implement strategies that support all learners without separating out. Working to autistic cognitive strengths. I talked earlier about monotropism. If we know that autistic people were zoned in and focusing on a few interests at a time, and then will have difficulty shifting attention, then if a child, a student is really struggling, can we work with an interest-led curriculum for that student? Can we give them more time to follow their topics of interest so that you’re accommodating that need to be absorbed in the topic for maybe a longer than a 25 or 30 minute lesson.
Teaching self-advocacy, I think as within all of our schools, we should be encouraging our young people to say, “What do you need and how can we help make that happen for you?” Rather than dismissing a student who might say, “It’s too loud in here, it’s too hot in here. He’s poking into me and he’s hurting me,” rather than say that that’s not, that didn’t happen. That that’s irrelevant, actually say, “I hear you. Let’s do something about that and thank you for bringing that to my attention,” that is teaching a young person to self advocate.
If we want our disabled children to grow up, to be able to be self determined, they need to self-advocate and we need to support them in that, and that is education.
We, of course, need to move away from a behavioural approach in our schools. I would love that if we can get rid of sanctions, consequences, detentions, especially for children who have emotional dysregulation, who have trauma backgrounds, who are autistic, may be experiencing high distress meltdowns and then they’re sanctioned, or they do things like say for example an autistic person who doesn’t see social hierarchy because of their different perception, they develop horizontal relationships.
They don’t say that the principal is actually any different to them, but just a person. Speaking to the principal in a very direct tone can actually be punished when actually the autistic person is just speaking in their own authentic way of communicating and their way in the way, how they see social relationships, which is horizontal and not hierarchical. I suppose if we could lessen up on that and have a bit more flexibility. Recently I was in a school where a young person had his hood up in the classroom. Usually I see that as a cocoon, a way to feel safe and a teacher walked into the classroom and said, “Take your hood down, the schools rules are no hoods in the classroom.” I thought that’s really harsh because this young person is quite distressed.
He was doing something that was helping him cope. Then he was being punished publicly for disobeying a school rule. There was no compassion. I think that’s where all these little small things add up to make education a hostile place for our young people and that’s probably it really I suppose in a nutshell.
Saj: I think the example that you gave just then of the child with the coat on as a coping strategy, something that’s very familiar to me and as far as I’m aware, this type of rule came in because Ofsted inspectors in the settings that I’ve worked in, would expect to see a class all ready for learning. A class that’s wearing hats or wearing coats is not ready for learning. Clearly from the ableism point of view, that’s not respecting the fact as you say, some children, young people are using these behaviours as a coping strategy. I think also, what was interesting and what you just said at the start about the school bell. In FE, we don’t have a school bell. Getting students used to the idea of taking responsibility for their own movements is always interesting.
Elaine: I can imagine.
Saj: We don’t have the school bell. What we do often have in FE is buildings where the lobby or the atrium has hard, shiny, reflective surfaces, glass, and steel and is echoey. We have practical rooms, again metal and glass and tiling, all very echoey. For those with sensory issues, it can be really, really distressing. The colleges that I’ve worked in or visited, where there’s a sensory room are very, very much in the minority, unfortunately. I think in FE certainly, and I think in education in general, do we really need to be thinking about the built environment and making it as friendly as possible for our neurodivergent learners?
Elaine: Yes. We should be asking them, “What will make this a comfortable and safe place for you?” Design it right from the start and get the people involved who are going to be users of that space, and help them shape what that space should look like.
Saj: Yes, I think that’s a fantastic bit of advice. Finally, widening out to all learners, from your practice of working with neurodivergent learners, what practices do you think that educators should really incorporate into the normal routine of planning, teaching, and learning? What lessons can we apply to really make education as accessible as possible for everybody?
Elaine: Well, I suppose, just echoing my last point. If we design it right from the start, and if we design it for disabled, and neurodivergent learners, we get it right for everyone. Rather than having– At the minute, we have a mainstream education system, mostly. Then we are squeezing in neurodivergent learners at the edges, and they have to fit into what is already existing, rather than creating a new space and way of educating. There’s no easy answers to this, but I suppose universal design is where we should be thinking about.
I suppose I would think about having all forms of different ways of participating. Lots of different ways of sharing and giving information and lots of different ways for learners to actually participate. For example, if you can write an answer or you can decide to put your hand up, that means that everyone can participate. That means that the shy, anxious child can actually participate and can feel, “Okay, I have a way to be participating here.” Rather than feeling, “I’m failing immediately. I actually have been given a way that doesn’t make me feel that I’m less than the person who can put their hand up.”
What will work for an autistic student will work for any other student as well. I suppose there’s probably maybe a curiosity approach as well. From my own practice, rather than coming with a preset idea of, “This is an autistic child. These are the things that they’re going to need. This is how they learn.” Go back to being individualised and personalised. I know it’s very difficult, obviously on a classroom basis to do this.
If we can make less assumptions about what it is that this student needs and listen to the student, be led by the student, then we will probably make adjustments that actually benefit all possibly. We’ll be getting it right, we’ll be tailoring the education for that individual student and in some ways, there will be a ripple effect to other students as well.
Saj: Well, thank you very much for taking the time to speak with me today. I’ve learned so much, there’s so much there for me to put into practice in my own career. I hope everyone listening also has gained some insights that will help them improve the quality of education for all our learners, and especially for our autistic children and young people as well. Elaine McGreevy, thank you very much.
Elaine: No problem. Thank you.
Saj: Thanks to Elaine for sharing her insights on how autistic children and young people can not only survive in education, but with the right support can thrive.
You can find Elaine on Twitter @ElaineMcgreevy and if you want to know more about her work as a speech and language therapist, visit her website accesscommunication.org.uk/
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