Autism and the heart

I have read that there are lots of different co-morbidities (don't like that word) that come with autism, and one of them is congenital heart defect. I had one of them, being born with a hole-in-the-heart (medical term is ventricular septal defect). If this is you, or you know someone with this, please read what I have to say. It might not happen to everyone who is autistic and has a heart defect but it can happen, which it did to me. In 2020 I fell seriously ill and didn't realise how serious and complicated it was, until 2021 when I ended up in hospital and being diagnosed with endocarditis. I had a blood test which revealed I had a bug in my blood. That bug had got into my blood stream and then to my heart via the hole-in-the-heart that was there. It then found the leaky heart valve I had (medical term for that is aortic regurgitation), where it made the valve worse so that it spread throughout my body during that year. It infected my valve so badly that it needed replacing, and I now have a mechanical heart valve. The hole-in-the-heart was stitched up during the main surgery.

So, how did the bug get in my blood in the first place? Well, I am not completely sure but I still think it was during a dental hygiene appointment when my teeth were being cleaned. This was before Covid, and procedures have slightly changed since then. If you have a congenital heart defect you will probably have a special card to take to your dentist when having treatment about having to have antibiotic cover. If you do have one of these, please use it and make sure your dentist/dental hygienist adheres to it. It is important to your health and heart. I will expand on that next week.

If you have a heart defect or even a leaky heart valve, please take care of both your heart and teeth. They are closely linked as I have found out to my own health, even if I did take the antibiotic cover on that day.

I am aware that not all autistics might have a heart defect, and not all people with heart defects are autistic. I have met a couple of people (both ladies) when I was in hospital both times who had heart defects and weren't autistic. 

If you would like to know more about how I coped with his heart infection and why I am passionate about it (dare I say it is close to my heart), then why not read my memoir 'Endocarditis - My Journey'. It is available on all digital platforms as an ebook, also as a paperback via my website (UK only), and from The Book Dragon bookshop instore and on-line. 

Being an adult with a heart condition

I have talked about how I was as a child with a heart condition but what about when I got older and became an adult. Well. If I had to walk so far, then I would have to stop along the way and get my breath back. I would also get a stitch in my side. I couldn't walk too far or too fast. I would get that stitch, and/or get out of breath by the time I got to my destination. I certainly couldn't run that far, either. For the bus, yes, but that was it. The last time I remember really running for a bus was several years ago now. My mum and I had got to one bus stop to see the bus we needed to go on to where we wanted to get to. The bus had to go round a main route which included traffic lights to get to the next stop. We walked fast with a bit of running. We made it and got on the bus, but it really puffed me out. I had a stitch in my side, I was out of breath, and I had a pain in my stomach as I was gasping for air. It was the worse I had been that I recall. I vowed not to do that again. I don't think we did.

Now that I have had the surgery and don't have the hole-in-the-heart, I think I might be all right that way. I don't know yet as I now walk with a stick due to balance issues caused by the perimenopause. So at the moment just running a little bit makes my balance even worse. I would like to think that I would be able to move like that without the stitch and the breathlessness. We shall see. I plan to build up my walking over time when it is warmer.

#HeartAwarenessMonth #hearthealth #adultcongenitalheartdisease

If you want to find out what happened to me so that I no longer have that hole in the heart, then it is all in my memoir which can be found either via my website, The Book Dragon bookshop, Amazon or all other digital platforms as an ebook. 

ASD and common co-morbidity

I was born with a ventricular septal defect (hole in the heart or congenital heart disease). It wasn't until I was diagnosed with Asperger's in 2011 and read the report that I discovered that this is a common co-morbidity with ASD. Who knew?

So how does it affect me? I am slow, physically, than others. I get a stitch in my side and breathless when I either walk fast, go up a hill or run.

At school I hated PE because I'd be one of the last people to be chosen for teams; probably because I was slower. I hated the gym sessions in primary school. I couldn't do handstands because the blood would rush to my head and I'd go dizzy. In secondary school I remember when we had a sports day at a nearby stadium. Most of the school walked there but I had to get the bus with a few others in my class. We got off at the wrong stop and were late for the start.

When I was little I was told that the hole would decrease in size when I got older but over the last couple of years, I've been told that it has done the opposite and stretched. I still get breathless going too fast or up hill. Sometimes when I walk fast I can hear my heart beat louder, as it's worked hard.

So, that is my common co-morbidity with ASD. Do you have one, too? How does it affect you?

I have loosely based Book 3 of my Rainbow School series ' Susie and the Jiggling Jumper' on me. Susie has a heart condition which makes her slower than her classmates and her little sister, so she has to overcome this with her ASD.

Susie's advice with coping with the anxiety of a heart condition is: 'Don't worry about this. Do things at your own pace and don't feel pressured into doing something that you know you can't do.'