So this is a post I have been planning for a while now, about the life of a person – like myself – who has Autism Spectrum Disorder and Type One Diabetes. These two conditions do appear to be linked (some professionals would disagree) but there appears to be no scientific reason why the two are linked, yet in every group I have been to for those of us who are type one, there has always been at least one other person on the spectrum.
However, I’m not about to argue about the whole who, what, where, when of Autism and Diabetes, I am simply going to talk to you all a bit about my story as a diabetic and how it affected me.
I was diagnosed a month or so after my tenth birthday as a type one diabetic. I don’t remember the exact date, I’m not even 100% sure it happened in December. I do remember that I was drinking and going to the toilet a lot, to the extent that one night I got up to the toilet eighteen times and still managed to wet the bed. Up until that night, it had all been put down to stress as my Mum had only just come home from two months in hospital with Encephalitis (causing the brain to swell) and my family, mum included, considered this reaction to be due to the anxiety and change that I had been enduring.
I remember after that night my mum had phoned or seen the GP (this chunk in my mind is a little blurry) and I was taken straight from school to the local hospital, where, after blood and urine testing I was diagnosed type one. At this time my parents knew so little about the condition that they honestly thought all it meant was that I would no longer be able to eat sweet things and that is far from the truth of the matter. They didn’t know that from that day I would have to have a minimum of four injections a day and four finger pricks although in reality the checks on my blood sugar levels were often at least double the minimum amount.
There are likely some of you who are now thinking… wait, I thought diabetes was about being overweight and was caused by sugar? This is totally WRONG, type one diabetes has nothing to do with sugar or weight. Type one is caused by the pancreas (a little organ down next to your stomach) failing to produce any insulin. Insulin is what turns the sugar from our food into energy and without it, the level of sugar in our blood can become so high that it will – over time – be deadly. In type two diabetes, the type which is always talked about on the news and other media types is caused by the pancreas struggling due to poor diet and sometimes due to genetics.
When I was first diagnosed this was an issue that I struggled with, that people did not believe I was diabetic because they thought that only old fat people could get it. I was frequently told by elderly people that I had eaten too many sweeties as a child. As a kid with Autism, I found this very difficult. I didn’t understand that what these women were saying to me was false knowledge and it upset me, making me think that I had been a bad child in some way. I also experienced being called a drug addict and being told I was disgusting when my parents would have to give me injections, or later I was giving myself injections, in a public place. Most of the suffering I have experienced due to diabetes has come from the hands of other people.
I was a very lucky kid in that my parents helped me to be strict with my diabetes, helped me to understand the dangers if I was not careful and did not keep in control of my illness. It was due to the guidance they gave me and the strict rule-following mindset I had as an Aspie girl, that only two years after I was diagnosed as type one I was one of the first six kids in my NHS region to be trialled on the relatively new Insulin Pump. This meant only one injection (the insertion of a cannula) every three days instead of four or five injections.
Before I got the pump I wasn’t sure about it, in layman’s terms, there was going to be a plastic tube going into my body all the time and a machine attached to the end. I would have to wear it all the time and there would be no hiding it. This was not the reality of the situation. The Insulin pump gave me back freedom I had forgotten about, it meant I could eat at any time of the day not just specific and set mealtimes. It meant I could eat extra foods such as an ice cream or other treats without being given another injection.
And I suppose that is us almost up to date on the whole T1 story, the most recent part only changed in the past six months or so and it came about due to a less than great happening.
As I think I have mentioned before I have had an eating disorder for around five years now and due to this my HbA1c (basically my long-term blood sugar readings) was very high, much higher than it had been since my diagnosis ten years ago. Due to this my mum and my diabetic Nurse agreed to have a trial of the amazing Freestyle Libre.
The Libre is a little cannula which goes into your arm and you scan this cannula (there must be more technology to it than that but I don’t know how it all works) with the little reader (smaller than a mobile phone) and it tells you not only your current blood sugar but shows it on a graph of the past 24 hours as well as giving a little arrow which indicates the direction that your blood sugar level is going in. It is amazing and the first life-changing piece of tech since the pump was made. I love this invention and it makes living with ASD and T1D much, much easier.
One of the hardest parts of having Type one and ASD is the issues with executive function. Of course, diabetes is now such a huge part of my life that it has become very normal and mundane and therefore I often forget to check my blood sugar levels. The brilliance of the reader is that instead of it taking five minutes to check my blood sugar I can carry on doing whatever I am doing and give my arm a little swipe with the reader and bingo – blood sugar done! It means I have far better control and for those that are also diabetic and face this battle, the Libre got my HbA1c from 87 to 52 in six months. It is incredibly expensive when it comes to self-funding but it has made a huge influence on my life and made Diabetes much easier yet again.
When it comes to living with ASD and T1 there have been a lot of battles, a lot of issues with learning how to recognise changes in my blood sugars (before its so low that I can’t see… oops) as well as having many, many, MANY meltdowns when having to get injections and finger pricks in the early days. I can vouch for many of us though who are ASD and T1, I can say that we can adapt, we can learn to live our lives in entirely different ways, we may struggle, but we can do it and we will.
Autism is a different way of living, after all, not a wrong way.
Thank you all for reading, I apologise hugely that things have once again got a bit sporadic with my posts but as it is exam week (gulp) and I have been very ill for the past two weeks I have been a bit all over the place. I hope you enjoy this post, any thoughts, comments or questions are as always more than welcome. Thank you all so much 🙂