Real Stories: Parenting a Child with Autism and Type 1 Diabetes

Raising a child with either Type 1 Diabetes or autism presents unique challenges- but when both diagnoses are present, families often find themselves navigating a complex uncharted path. This is the experience, insight and practical wisdom of one family in their own words doing just that.

What co-occurring condition(s) does your child have in addition to Type 1 Diabetes?

My child has type 1 diabetes, she also has autism, (up until recently was undiagnosed) and a working diagnosis of ADHD– commonly that combination is known as AuHD. This means that on the one hand we are balancing a chronic health condition with many everyday demands that require constant management and on the other hand a mental operating system than can make every day demands and pressure overwhelming. 

We would also say that for the past year we have been dealing with an added condition of Autism burnout which has no time frame to recovery.

Autism burnout means our child pressure sensitive and highly anxious which can really work against the everyday demand needs of type one diabetes management.

How old was your child when they were diagnosed with each condition?

My child was nine years old when she was diagnosed with Type One Diabetes. She received the diagnosis in an emergency room the week before the start of year 5. She received an ‘official’ autism diagnosis around two months ago at the age of 13. As parents, we have been supporting our child with a working diagnosis of autism since age 12, although the referral for an assessment started at the end of year 6.

We had an understanding in our minds as parents that she was autistic since around the age of 11 to 12. When she started secondary school, we referred her for an autism diagnosis. We had previously referred her for an ADHD diagnosis towards the end of year six primary school and she had a screening that year in October when she'd already started secondary school, which actually indicated that she was most likely autistic. She had a screening with CAMHS that indicated that she was most definitely probably autistic. So she was added on to the wait list for an autism diagnosis. We filled out various forms for that diagnosis and more forms for an ADHD diagnosis.

This is a recent diagnosis, but we have been working with an understanding that she's autistic and the transition into secondary school and the subsequent burnout proved that she was most definitely neurodivergent and struggling with everyday demands. So in some ways, I would say that we're dealing with not just a dual diagnosis at the moment, but a kind of trio because the neurodiversity is something that you manage and you work with and you do adaptations, but we would definitely say she's currently an autistic burnout. So there are things that we have to change in the way we manage her diagnosis with the way we manage her diabetes because she has such a low tolerance for demand and is so burnt out.

What are the biggest challenges you face managing both conditions at the same time?

The biggest challenges for us have changed over time. Initially, it was all about maths and working towards making sure our child has the tools and we had the tools to make T1D something that existed along side our lives rather than something that ruled it. As with all parents and carers our priority is to ensure that our child has the appropriate devices, the appropriate access to insulin, and access  glucose to stay healthy. 

One of the added difficulties we have is the struggles with pressure that our child has in regard to everyday demands. For instance, we change her Omnipod pump every three days and her Dexcom CGM every ten days. Something that emerged after around a year of having Type One Diabetes was that these device changes were becoming increasingly difficult. They were causing a lot of emotional dysregulation and the amount of time it took to get to an agreement to remove or attach a device was increasing. We, as parents, didn't really understand autism or pressure sensitivity. We weren't thinking we were working with a diagnosis of autism, so we hadn't done any research. So, there was a lot of “why don't you just get on with it?”, “You have to do this every three days, why are you making such a big deal?” Not too proud of that!

So, when things got really hard we had to learn new ways. We had some fantastic support from our diabetes nurse. One of the suggestions we were given was to play a favourite song as a distraction, because one of the factors is the suspense and the little clicking sounds as the pump prepares to insert the little cannula. Sound wise, it's like a torturous countdown and we realised that our daughter was sensitive to these sounds.

 Due to rigid thinking that comes with our daughter’s spectrum presentation we always had to play the same song but the anxiety she felt meant we had to play it multiple times until she felt safe enough to let us press the button to activate the canula or could do this herself. I can remember one time it was three hours worth of playing the same song over and over again, which was so hard to stay patient through. I don’t think I will ever be able to listen to Lizzo’s ‘About Damn Time’ without feeling PTSD!

Once we started to think more about supporting her with a working diagnosis of autism and research autism burnout and PDA (Pervasive Demand Avoidance) we were able to understand that yes, she does struggle with having pressure and unperceived demands, even if those demands might save her life. So, we have had to give her a lot more autonomy. Sometimes it would be convenient for her to change the pod earlier in the day or change it to fit around our schedule, but we have found that is more important that she is prepared and it fits her timing. We talk about it on the day that she's going to have the pump set or device change and we maybe mention it the day before. 

And we give her enough space to choose when she does it. And if at times we find ourselves doing the pod change at 10 o'clock at night, then we do it at 10 o'clock at night. We would rather change a CGM earlier in the day so that we don’t have to calibrate in the night, but we sacrifice a bit of sleep to keep her regulated.

As time has passed, the need for music in the background and the amount of time that it takes to change a device decreased  as she has had more and more agency and autonomy over when it's done.

How do the symptoms or management of the multiple diagnoses impact your child’s blood glucose control or diabetes routine?

I can only speak about our child's experience of autism as we understand it at this moment in time. 

Food selectiveness can be an issue. Due to sensory issues around textures our child has a limited range of safe foods that she will eat. This is not too severe but can cause an issue if she suddenly cannot tolerate one of those foods just after she has had a bolus. You can find yourself having to prepare a whole new meal at speed that has similar carbs. Unfortunately, most ‘safe’ foods are processed as they have uniform textures and this an ongoing challenge.

Presently and for the last two years, it's clear that a high level of social anxiety and perfectionism as well as rigid internalised thinking have caused extreme anxiety. We could see that in the blood sugar levels. It became quite clear within two years of T1D that there were times when she was going really high and there wasn't a reason. At first, we were thinking maybe it's growth hormones? Maybe it's hormonal changes? Maybe she will soon be having a period? All of these things can affect the blood sugar levels, but it still wasn't clear. Since burnout our child has been at home with us, unschooled, for a year. We have changed how we do life as a family to support her mental wellbeing, we do a lot of adaptations, we do lots of preparations to help her with transitions.

We're still very much at the beginning of this difficult journey, but compared to when she was undiagnosed, unclear about how she was feeling, and in a constant state of stress due to the transition to secondary school and all that Year 7 brings, her blood sugar levels are fantastic. In fact, in the last month, she has had the best blood sugar levels since diagnosis. We had one week where she was 94% in range! So, it just shows how much psychological well-being affects blood sugar levels. 

We have come to understand that you are someone who's neurodivergent, you're living with a different operating brain operating system and even nervous system to other neurotypical people, so you are more sensitive to things, and the world is often not built for you. This means you are constantly coming up against things that are going to cause you a higher level of stress and that will affect your blood sugar levels. 

Have you had to modify your diabetes management plan because of the second condition? If so, how?

We have had to modify our expectations of making our child more independent in her management. Attending three monthly medical reviews, going on day trips, residentials, independent outings or sleepovers with friends have not been possible since burnout. And so, our expectations of how independently our child manages diabetes have had to be changed. We put very little pressure on her now, and we are very slowly getting back to a place where our child can start to feel comfortable attending some of those appointments again and engaging with people, but it is a very, very slow process of recovery.

So that's the main thing we've had to do, adjust our own expectations. We do believe that she will be able to manage T1D independently as an adult but as we also understand that some parts of her executive functioning and emotional processing will be somewhat delayed compared to her peers. So it might be that what we would expect from an 18-year-old will be more likely to happen for her some time later and with some support.

Are there any tools, apps or routines that have helped you manage both conditions more effectively?

Tools and apps are fantastic. Carbs and Cal on a smartphone is an absolute game changer, especially with the function where you can use the photographs rather than weighing the item. When our child was more able to socialize without us, she would always make guesses based on the photographs. It’s not as accurate as weighing, but for us, the priority is the independence first and accuracy later. The Dexcom Follow app is great for our peace of mind and means we can still manage her hypos without waking her up too much – it also allows me the respite to leave the house for walks without needing childcare as I can talk my child through a hypo or get back in 5 minutes to help.

She uses her Dexcom app and has some settings on there for when she is starting to go low so she can do a blood prick and catch a hypo early. We have the Glooko app where you can see the last weeks information from the pump and the CGI combined, we are slowly starting to try to introduce into our routine so we can  work towards being in s place by age 15-16 where we can be looking at the app with her and looking at patterns to suggest adjustments.  

There isn’t a tool or an app for Autism or autism and T1D, but the best tool is connection. 

For us its device changes – no matter how many times we have done them - empathising with all the feelings, empathising with the stress. And making sure there are things that help your child regulate like playing music, playing video games, watching a favourite TV program, making sure a favourite cuddly toy is to hand, or a favourite fidget toy is on hand.

Another connection technique is to allow your child to info-dump about their latest special interest – maybe it means listening to half an hour of the ins and outs of a Manga book, the lore of a video game, the 102nd episode of (insert favourite show) – this will really help calm the nervous system and will make them a lot more amenable to device changes.

We have found humour is great. We have also introduced swearing as a healthy and useful way to manage all anxiety and particularly device changes. Last night our child wanted to change both devices as one was due to expire and the other seemed to be defective as her BG levels were higher than they should be. She wanted to do it but then got stressed and wanted to avoid it. We just had to be very patient and back off. But humour and encouraging her to swear really helped. When our child locks the door to her room during times like this, we used to feel helpless but now we text funny memes or just chat about silly stuff. My husband sent a little reminder about device changes after a bit of this and encouraged her to swear which she did vociferously in text. Cue lots of laughter and her coming out to do it. Humour is the best.

So, you can see from this that there are ups and downs. We have gone from a worse case scenario in one hour to agreeing to push the button on the Dexcom applicator to just being told to ‘do it’ as she plays her favourite online game.

How do you communicate your child’s needs to school staff, babysitters or extended family?

This question is hard to answer. We can give you examples of what has worked and what hasn't worked for us. What has worked was, after initial diagnosis, our child’s primary school was really engaged and wanted to have a variety of people trained to support our daughter with her diabetes management. So, what really worked was having a diabetes nurse come in and have three or four people trained together and have a little session with us where we talked about how we manage it with our with our child, you know, like our little quirks which might help. This also really helped with going on a residential for the first time. There were two teachers who wanted to learn how to change devices and we arranged a session where our child had a device change at the school during school hours, I went in and I changed the device with the two teachers in the room,  it helped our child get comfortable with the other people helping her with this and helped us  helped us to talk about what's difficult about it. 

In contrast, what didn't work with the transition to Secondary school was having a very small welfare team. I think only one person was officially trained, not trained with our nurse, but trained at some point historically in diabetes management. What didn't work was having a set up where the school felt very strongly that they knew how to manage Type One Diabetes, that they'd done this before with other pupils and they weren't interested in any further input. This led to complications. The first one being that, although they couldn't stop our child using their smartphone for diabetes management, they created a weird contract and spoke in unclear language that basically indicated to us and our child that although our child had the smartphone, it could never be seen by any of our child's peers and it must only ever be taken out in the welfare office where no one else would see it.

In contrast to primary school where the teachers were like, “yes, there aren't any smartphones allowed at school, but this pupil can because they need it to manage their condition”, the Secondary school had an ethos of no overt exceptions for anyone. It meant that the burden, the pressure and all the responsibility was on our child to basically hide the condition and not be open about it. The school never said that had to be the case, but in practice she would have to leave the class to manage it, there wasn't a facility anywhere in the canteen for her to weigh her food. She wasn't allowed to take out her phone to use Carbs and Cal to work out how many carbs she was eating.

This led to just ending up doing packed lunches, which is where the secondary diagnosis issue came in because our child was relying on the same set of  safe foods and the whole sensory issue around food and pack lunches, everything being  the wrong temperature and not  the same as at home and, if you're always asking for a safe food, you go off it and then you start to skip meals and we were finding increasingly she wasn't necessarily eating much food at all and then cramming three meals worth of snacks when she got home. 

So, this was what it looked like when the communication doesn't work. In our case, it wasn't that we did the wrong things. We had a care plan with our diabetes nurse. We had talked about it in advance. We just we weren't given any agency, and we did work really hard to advocate and bring about some changes but to no avail. To give further context, by the time my child could was in burnout and couldn't attend school anymore, nine months had passed and we had had various email communications, visits with the welfare officers, visits from our diabetes nurse but still we still didn't have a firm agreement about of a practical place to weigh food and bring her phone out that was closer to the canteen than crossing a playground to get to the welfare office. This was verbally agreed in some meetings, but nothing really progressed and importantly our child who needs clear language was never told explicitly by a teacher that she could use her phone for T1D management openly. In fact, she once asked if the alarms where necessary and could be muted.

These days we don’t really do baby sitting but my mother does come and help out sometimes. My mother has dyscalculia so this condition with so many numbers is not the best for her to help with, but we leave her large notes to show what numbers are bad and what numbers are good, and make sure we are near enough to get home within 30 minutes in a cab. When our child is with my mum, she manages all the carb counting and boluses and it's a nice change for her to keep those mental muscles being used. 

What strategies have helped your child understand or cope with having multiple conditions?

Humour, always humour. Being emotionally honest and not sugar-coating things or using language that doesn’t empower and centre the child. One of the things our child really struggles with is being told things like “oh, don't worry about that” or “you don’t need to worry about that” or “it's not that big a deal”. For her that's a little bit like someone saying, the sky is green, and the grass is blue. It just isn't true. It isn't authentically true to her. So, at home we're increasingly giving her the tools to to explain her struggles and the main thing we found is that that once we met her from a place of emotionally honesty rather than putting a ‘brave face’ on things it helped. Saying, “Yes, this is upsetting. We wish we have we didn't have to do this.” Acknowledging her and validating her anxiety and her desire to avoid a thing then giving her the space to choose when to do the hard thing. Those have been great coping strategies. 

Getting a diagnosis for autism is really helping her to feel that she's starting to understand herself better, but it also, for her this label is amazing because it explains a difference that she's felt and understood in herself but didn't have the words or language for. The diagnosis gives her the language in tool to advocate for herself. She is starting to feel a lot more comfortable not trying to be the same as everyone else. And she's a lot more open and verbal about the things that she finds difficult about everyday life and about diabetes management.

What kind of support (emotional, logistical, medical) has been most helpful for your family?

We could not do what we're doing without our amazing team at our hospital. Their way of supporting us and their ethos is very much being a team wrapped around the family. I think they’re very proud to be a team that do everything they can to avoid diabetes burnout and carer burnout. One of the most amazing adaptations they have been able to make during our child’s burnout has been to make home visits. We've had monthly home visits with our diabetes nurse and they have often sort of lightly mentioned diabetes, but generally they've just been about connection and just keeping that safe trust with our child. And that has been amazing at getting our us to the point where our child was able to attend her yearly review in March, despite still not being able to go to see her grandparents. There was one time child wasn't able to see the diabetes nurse and just stayed locked in their room and our nurse just sat with me to support me to see how I was doing. 

Other immense support has been from a local mum with three neurodiverse children, one of whom had 18 months worth of burnout a couple of years ago. Having someone walk along side you and say, yes this is weird to everyone else but this is normal for the situation was really helpful on the days where it all felt too bleak.

What advice or tips would you give to another parent just starting out on this journey?

Believe in yourself, research, research, research, and find people in the same boat. When we initially had the T1D diagnosis, I was quite open about it in my network and I was introduced to a bunch of people who whom I've never met in person, but who kindly offered to take a call from me and just listen and give advice. That is invaluable. And now with a secondary diagnosis we're lucky enough to have a couple of local friends with autistic kids but we are looking to find a network of parents with a similar profile that we can build relationship with.

As we look to the next couple of years, we've come to the conclusion that we won't be doing things in a mainstream way for some time, if at all. So, it's really important to have people around you who understand that, who understand the struggles, because you spend so much time advocating for your child, either for their diabetes management or for their sensory or emotional or social needs, and when you're advocating for your child with people who don't necessarily understand it, you feel like you are spending all your time explaining.

So, it's so vital to have people who do understand the situation because they live it and so that you can have a good moan. Its important to be able to have a good moan about it. This isn't easy. It’s hard work and its draining at times.  And other times very funny too, but you need your people to share this with so you don’t burnout.

Are there any specific resources (books, online communities, specialists) you recommend?

I wish there were some resources that were specifically how do you manage T1D and autism demand avoidance!

I don't have those, I can highly recommend that if you have a child who going through emotional based school avoidance, burnout or school burnout or just really struggling with school-based anxiety, that you consider that it may be due to neurodiversity and investigate this. I would also highly recommend any material by Eliza Fricker and any material by Dr Naomi Fisher. A book by Heidi Mavir ‘Your child is not broken’ was a game changer for me.

Is there anything else you’d like other parents in the Type 1 community to know about managing a child with autism, as well?

When I think of the type 1 community, I include the NHS providers and teams too who do amazing work. I suppose I would like it to be understood although we have this life-saving technology that saves our children's lives and will help them have long, healthy thriving lives, that this technology is not always the easiest answer for certain people, certain demographics. So, if your child is neurodivergent, there are many reasons why they are potentially going to struggle with having a device on their body. Some of it, like in our child's case is outside of the short sharp pain, it's to do with the pressure of the maintenance. For some people, having something attached to your skin that is not one of your limbs is a horrific feeling. And for some people the logic and the reason behind it still won't help them overcome this almost primal horror of having it on their body. So, I suppose I'd like that to be better understood. Yes, it's great, that we have these things, but there will be people who struggle more with their diagnoses because of their additional sensory needs and because of their additional social needs.  

I guess that for all of us as a community of families and parents, we should hopefully be trying to advocate to support each other, from the person that struggles most to the child that struggles the least so that we get to an even keel. 

We have this great technology, but I am always on the look out for alternatives and will keep checking in with my team. So, it is important to keep on looking for alternatives.

I guess it is understanding that for some families and people that perfect piece of technology which makes life so much easier than needles is still really hard.