Unpacking Autism Ep.10: Don’t check out of check-ups! Navigating sight appointments

Reena: [00:13]

Welcome everyone to today’s episode of Unpacking Autism, and as usual, you’re going to love this one. I’m absolutely delighted to be talking to Katherine Anguige today. Katherine is a principal optometrist at Moorfields Eye Hospital and she’s got a wealth of clinical experience in paediatric and adult refraction and low-vision, glaucoma, external diseases and general ophthalmology. She’s the lead optometrist for the paediatric service at the hospital and since qualifying with a first-class honours degree in 2007, Katherine’s gone on to complete the College of Optometrists Professional Certificate in paediatric eye care and the Higher certificate in glaucoma. She’s also a registered independent prescriber and holds a postgraduate certificate in healthcare leadership. Katherine enjoys seeing patients of all ages and making them feel at ease, and she has a special interest in the provision of eye care for those with learning difficulties, carrying out eye screening for those in special needs schools and setting up clinics for adults with learning difficulties.

I was really keen today to bring Katherine on because it’s not easy navigating unfamiliar spaces with our autistic children, whether that’s the dentist, the doctors or going for an eye test. And Katherine’s got a wealth of experience in this area and is going to be sharing with us today some tips on how we can navigate this journey with our children to make it as stress free as possible, both for the child and for the parents. So, I’m hugely grateful to you Katherine. You are an extremely busy lady, and not just at work, you’ve got your family and all sorts going on. So, thank you so much for taking the time out to share with our parents and carers and listeners some of your experience.

Katherine Anguige: [2:06]

You’re very welcome. Happy to be here. Thanks for inviting me.

Reena:

Thank you so much. So, I’d love to hear what is it about this area that’s of particular interest to you?

Katherine Anguige: [2:21]

Well, I think it’s just the fact that vision and eyecare is just so important in a child’s development. Their learning – not only that, but the general wellbeing, their happiness and their enjoyment of the world around them. It’s just so key to make sure that their vision is as good as possible. And I’m really keen that eye tests are just as accessible for children with learning difficulties, with autism, so that they can have the same opportunities and reach the same potential as everybody else.  I’ve seen obviously first hand all the different children attending the clinic. So, it’s really just super rewarding to see the children and to give them the care and to put them at ease. If I can impart any of that knowledge then that’s great.

Reena: [3:27]

That sounds amazing. It’s so admirable. I mean, I can only imagine the different challenges that might present themselves when you have children who might be afraid of the environment. I mean hospitals in their nature look quite clinical, can look a bit scary, so much equipment. And managing that – to be able to even conduct a test. I loved what you just said there about, by looking at and correcting and supporting their eye health, that actually opens up so much more of their world that they can participate in. It’s not just about being able to see. It’s about so much more than that.

Katherine Anguige: [4:14]

Yeah, absolutely. Their education and as I say, their wellbeing. If you can see the world around you, what more of a joy is that? If you go on a walk and you can see the birds in the trees. Everyone should have that opportunity.

Reena: [4:32]

So, from your experience, what are the most common difficulties that you see when you have autistic child patients, in terms of getting them tested and helping them become comfortable with the environment?

Katherine Anguige: [4:50]

You’ve already touched on it, really. A lot of it is just that unfamiliarity and that uncertainty of what it involves. Going to a completely new place, whether that’s an optician’s practice or a hospital, as you say somewhere quite clinical that can look quite scary with all the machines and bits of equipment. We have to do certain tests that include bright lights, which often children aren’t keen on, and we have to get quite close up in some cases to actually look at the eyes as well. So just that general invading the child’s personal space – that’s quite tricky sometimes. And even just simple things like having to ask a lot of the child – a lot of cooperation, ask them a lot of questions. We have to explain everything quite easily and simply to the child, especially when they’re autistic, so that they get a grasp of what we’re actually asking them to do. So yeah, there’s quite a few obstacles there already.

Reena: [6:14]

Yeah, absolutely. And I think there’s always an element of either interest or curiosity and possibly fear when you have a neurotypical child. But the sheer number of layers of potential triggers for a meltdown, I mean, it’s quite ripe for a child to be highly distressed. I mean, the things you just listed now – I was thinking of Evy – the lights, the being in his face. Kind of the questions he would ask. I remember taking him – I mean, opposite end of the body, it was his foot. But he was asking everything. He absolutely grilled the podiatrist about his qualification to touch his feet before he would let him anywhere near them! But obviously Evy’s also able to communicate that, and a lot of autistic children might not have the language yet to even be able to articulate.

Katherine Anguige: [7:13]

Communicate, yeah, exactly.

Reena: [7:16]

So how can we overcome? What sorts of things do you do to help parents and the children feel at ease in that environment, either before they attend the appointment or even during it?

Katherine Anguige: [7:25]

Well, I think preparation is key. It’s all about talking to the child about what’s going to happen. Maybe even take them to the building if it’s in a local optician’s, just say, ‘Oh that’s where we’re going to go’, maybe even inside and just say hello to the staff that are there so that they’re all a bit more familiar on the day. So that when they go back to the eye test, it’s not as scary. There’s lots of resources that you can look at which actually are created for children with learning difficulties or with autism, which actually shows you the journey of what happens in the eye test. It’s put very simply in pictures and pointing out that we’ll use a light and we may need to get quite close to look at your eyes, preparing the child and the parents for what will actually happen on the day so they can talk through it and prepare for it. 

There’s a really good couple of resources. On the seeability.org website – they’re a fantastic website and they have lots of resources on a link there. One of those is called ‘Having an eye test’, so you can either look at that on your tablet or you can print it out and it’s actually got all these pictures of what to expect on the day so you can actually familiarise the child with it. There’s even a Peppa Pig episode where Peppa goes to get her eyes tested, so even something like that, just to make it more fun and show what’s going to happen. Even simple things like just practising wearing and putting on glasses at home, because we might want to put the glasses on, to put the lenses in the eye test. Having a little play with mum or dad’s glasses or putting some sunglasses on, just to get used to the feel of something on the face. Because a lot of children, autistic children especially, don’t like things going on their face. If they’re prepared for that to happen and used to it, then that’s really helpful. 

And the other thing that I thought of is, if you are coming to a busy hospital for an appointment, you could have the sunflower lanyard. So just for the people with hidden disabilities, they’re great. It’s a really visible sign: ‘Oh, actually we might need to just give you a bit more time and a bit more space while you’re in the hospital’. We have ‘helping hand’ stickers that we put on an individual’s notes that might need a little bit more time, a little bit more care, just as a visual trigger for us to know that person needs a bit more help. So, it’s that sort of thing really. And then we can do things like make sure that it’s a quiet time of the day that we’re seeing the child. One of our clinics here, we have dedicated to children with special needs. We do that in a different part of the hospital where it’s really nice and quiet. There’s no other children and families or milling around. It’s just them. And so it’s a lot less stressful. And you’re not going to be waiting for really, really long times, getting very anxious; you’re going to be seen promptly. Things like that will always help as well. 

And sometimes we don’t get all the cooperation in one go. We just bring them back another time. It’s not worth absolutely terrifying the child the first time, and then they don’t want to ever come back again. We sometimes bring children back again to complete some of the tests, just because it’s so much better all round in the long term, just to keep their happiness and their confidence of coming into the hospital. Yes – lots of things.

Reena: [12:01]

That’s amazing. I was just thinking, because even now, I mean Evy’s nine and I still use social stories for any place we’re going to, whether that’s visiting family or whether we’re going to an appointment. It just helps him mentally prepare for the place he’s going to, which is somewhere he’s not been, either before, or doesn’t go to regularly, and he feels a little bit more in control. So it’s wonderful, that Seeability have got that, and for anyone listening in, I’ll post the links to the resources that Katherine just mentioned in the show notes. It’s wonderful to hear like the quiet space and things; I think parents would find that really reassuring. Obviously not all parents will have their children as patients of Moorfields. Would you agree that if there was anything that a parent would feel could benefit their child, that they should feel comfortable in approaching the hospital setting or the optometrist’s that they’re visiting, to just share anything that they can do that would help make that visit a bit more comfortable for that child?

Katherine Anguige: [13:12]

Yeah, absolutely. That’s really, really helpful. I work in private practice too and in an optometry shop, so I work in that setting as well and that’s really valuable there as well. And often you can dedicate things and tailor things a little bit better when it is in that setting. It’s not quite as busy and quite as chaotic as a hospital. So yeah, the more information we can get, the better. 

There is I think – again it’s on Seeability website – there’s also a form that you can fill in on there. It’s called ‘About your child and their eyes’ and that has just really key information about what you’re concerned about. And also, as you say, any triggers that we’ve got to be mindful of when we’re doing the eye test. And that’s really good. You can actually fill that in and just drop that off at the practice before you have the eye test. So, they’ve got all that information even before you step through the door on the day. It just saves time. You’re not having to sit there asking all the questions. You can just get on and do the tests and just focus on that, which is much better if you only have a limited amount of time to get the cooperation. Yeah, information is amazing. That’s what we want, definitely.

Reena: [14:48]

I think parents will find that really reassuring to hear, because I remember in the early days feeling that anything I was asking was almost burdensome. Like I was actually creating more work for whoever it was that I was visiting, but from what you’re saying, essentially, it’s actually making that whole visit not only go smoother, it actually is helping the practitioner, because they can ensure that whatever they can learn in advance they can familiarise with, and then just get on with the actual task at hand.

Katherine Anguige [15:21]
Yeah, you already know what you really need to check because of what your concerns are, so you know what you can hone in on with your tests. And also what you have to be mindful of, that’s not going to hopefully trigger a meltdown – by being aware of what can actually trigger the child. So yeah, it’s really helpful. Sometimes they might book a double appointment or something like that. So there is a bit more time if we know all these things in advance.

Reena: [16:02]

That’s really helpful. I was just wondering: is there a correlation between autism and vision? Is there anything that talks about later diagnosis of eye issues, or do we find that children who aren’t able to express that they can’t see very well, maybe through a process of elimination, it’s later discovered maybe that they have a difficulty with their vision?

Katherine Anguige: [16:40]

Yeah, definitely. Both of those things are correct. I mean a lot autistic behaviours can actually present as a result of a visual problem: so poor eye contact, excessive blinking, turning the head, rubbing the eyes – all these sorts of things you can assume are just because the child is autistic. But actually, they’ve got an underlying eye problem. They can’t see very well, so they’re rubbing their eyes. Or they’ve got hay-fever, so they’re itching them. Various things. You could have a glasses prescription – they’re trying to really blink and focus. So, we need we need to make sure we’re not just overshadowing things and assuming it’s the autistic behaviour when it could be down to a problem with the eyes. themselves. So definitely there’s that element. And research would show there is definitely a link between a higher incidence of certain things with autistic children. Things like strabismus, which is where the eye turns in or out. You may have heard the word ‘squint’? That is thought to be, from research, about 25 to 50 % higher incidence in children with autism. And that can lead to the eye getting lazy if it’s not picked up and it’s not treated properly in those early years. Also, there’s definitely a link between a higher incidence of spectacle prescriptions in children with autism, and that links in with evidence that a lot of autistic children have weakened near focusing, which we call accommodation. One study showed that one in five autistic children had this lag of near focusing. They weren’t able to maintain that focusing when they were looking at their toys and things close up. Obviously, that’s going to definitely impact their learning, their vision – everything. So, it’s really important to pick things up so that they can be treated before they run into any problems. 

I think something like 80 % of learning is supposed to be from the vision, so if you can’t see well and you can’t focus up close, you’re really going to struggle. And you already may have other elements of problems with learning, other barriers, so you don’t need vision getting in the way as well. So yeah, it’s really important to check it. It’s very simple to just have a quick look; we can literally just have a quick look with a light and a couple of lenses and get an idea of whether there is something that we need to investigate further. So, it doesn’t take long to get an idea of whether there’s anything that needs looking into a bit more and needs treating.

Reena: [20:05]

Yeah, and for any parents out there whose children aren’t under a hospital or receiving any treatment for their eyes – would what be a good frequency for them to be asking for their child’s eyes to be tested?

Katherine Anguige: [20:25]

Well, the NHS will do eye tests on the high street for any child under 16 for free, and generally for under 16s the review would be once a year. Unless there’s any concerns, we would obviously follow up sooner. Generally, things you’re looking out for earlier: if there’s any family history of a squint or a lazy eye – so an eye turning in or someone in the family having to wear a patch – then that needs treating before the age of about 8, because the vision is kind of locked in by then. So, if there’s anything like that in the family – high glasses prescriptions from a very young age – then it’s a really good idea to get a test, especially if you’ve actually noticed an eye turn, or you’ll notice your child get really close to stuff or complain of anything. Those are the kind of things to look out for, as we said already, rubbing the eyes as well. 

As a rule, I think Reception age is a good age to have an eye test –age 4 – most high street opticians would be would be happy seeing a child from school age. If it’s less than that, or if the child isn’t able to name pictures or letters and you have a concern, then you would need to get a referral to the hospital to have a test done. We’d need to do more specialist tests. So that would be done, you just go to your GP and you get a referral. But generally, as a rule, school age and up and once a year.

Reena: [22: 18]

And with the example you just gave where they’re not able to label, say, letters or pictures –say the child is preverbal. Are there mechanisms – are there ways that you can still check the eye health of that child, where they can communicate in an alternative way with you?

Katherine Anguige: [22:38]

Yeah, absolutely. Even if they’re non-verbal we can test the vision by using – we call it preferential looking. The theory is that a child would always rather look at picture than an empty space. So, we hold the cards and the pictures on one side and an empty space on the other side and then you’re just literally looking to see what they look at and whether that’s correct, and then you get gradually smaller and smaller pictures. So, you can still get, even in children that aren’t verbal, a measurement of the vision in that way. 

And another thing we do which parents can do at home, which is really helpful, is just cover one eye at a time. And if they’re not bothered with one eye, and then you cover the other eye and they absolutely hate it, that’s the sign that there’s quite a difference between the two eyes. If that’s something that you notice, again that needs to be seen in the hospital because there may be something going on, there may be some glasses treatment needed or some patching. 

But yeah, there’s lots of tests we can do without actually having any sort of communication. And actually, looking at the health of the eyes in the hospital, we have a special kind of headset that we can use just have a very quick look and we can see the whole snapshot of the back of the eye, all in one go, super quick. And as I said, for the prescription, just looking with a light, literally just holding up some lenses. Again, not having to ask them, ‘Is it better with one, or is it better with two?’ You know, be all objective. It’s all looking, so yes, it doesn’t matter if the child has limited communication. We can still get a really good handle on their vision, their prescription, their eye health, all of these things.

Reena: [24:37]

I think that’s fantastic and I think hopefully that will provide a lot of reassurance to parents who might be wondering how they could even get their child’s eye health checked if they’re not able to communicate that. I think that will actually really help parents to hear that. So thank you for that. 

I think that’s been really helpful to share what parents can do in advance and what accommodations can be made in hospital and optometry settings to help their experience just flow a bit more easily for everybody involved. Did you have anything else that you really wanted to share or that you’d like parents to take away with them in relation to this topic?

Katherine Anguige: [25:25]

I think I would just say, if you have concerns, then obviously just don’t be scared to have an appointment to see the GP and ask for a referral. There are obviously tests that we can do and we can make accommodations for the child, and it can be made as hopefully as good an experience as possible. A lot of children just think when they actually have had their eye test that it’s really fun. You know, they get their sticker, we’ve had a little look with some pictures and they’ve played a game, and they brought their teddy bear in and we’ve tested their eyes, and they just think it’s great. And they realise that it’s not anything to be worried about and then they will come back again. 

So yeah, I would just say don’t be scared, and have the eyes checked, whether that’s in hospital or that’s in the high street practice. So many things can be picked up. It’s really important, especially in the early stages before the age of eight because that’s when everything’s fully developed, and the earlier the better to get them familiar as well. I would just really advocate – just go and have an eye test.

Reena: [27:03]

You heard it here parents, okay? Look, as Katherine said, 80 % of our learning is through what we see, so if your child’s not had an eye test yet, or if you’ve been worried about taking them because of their autism and because of how they sometimes may react to a new environment, please don’t let that put you off. Please reach out to your nearest optometrists and see how they might be able to help you make that experience one that isn’t going to be traumatising for your child. But certainly, we need to be on top of it, and we know that our children just need a little bit more careful handling. But we want to optimise the environments for them so that they can thrive. We have to make sure that they get their eyes tested and all their other health checks done, so that they’re primed for success, whatever that success looks like for them. So, you don’t have to listen to me, but you’ve heard it from Katherine, who’s highly, highly qualified in this space. And Katherine, thank you very much indeed. I think that’s been hugely informative and I think parents will find that really reassuring.

Katherine Anguige: [28:20]

That’s great, and if you get any questions, I’m happy to answer them if anyone contacts you.

Reena: [28:25]

Thank you so much. Thank you.

Katherine Anguige: [28:29]

Thank you very much.