If you would like to know more about autism, there is one good way and that is to meet me. I will be at
Come and say hello to me. Find out more about autism, me and my children's autism books. There will be lots of other crafts being sold too. Possibly home made greeting cards, art and gifts.
Hope to see some of you there. Let's celebrate National Autism Awareness Month together.
I thought I'd ask this question because something a cab driver said to me about autism on Wednesday made me think, what do others think autism is. This is what was said (not exact words):
I had told him where I was going and he asked me what was happening at the church. I replied that it was an autism family day for autism families organised by an autism charity.
The driver said something in the line of 'oh, autism can be funny with their routines and that. I drive a boy to school.'
When he said that, I thought, Mmm...
So I said, “Yes, we can be like that.”
He then said, “Oh, are you autistic?”
“Yes, I have Asperger's.” I then tried to explain to him why we like routines. I said it was to do with familiarity and the brain. If we were to go to a different place, our brains would get confused and we would have trouble transitioning from one place to another.
I think he apologised when I said I have Asperger's.
I hope that is what routine means to other autistics. Please let me know if this rings a bell with you. What does autism mean for you?
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.
