A journey through grief with autism.

Alan Greenwell

4-Minute Read


Any parent knows that when their child is ill that it is the most worrying of times. When a child is a bit quiet and complains of a belly ache any normal parent thinks a couple of polar opposite things at the same time. “I told you to stop eating so many strawberries” to “its appendicitis, and it about to burst”, both of these are normal reactions and you talk to your child to help make the decision as to what it is and before you get a chance to work it out they left off a large fart and are off playing again. It’s normal. Absolutely normal. When that does not happen and you end up in A&E at 2 in the morning well that’s a different story all together.

I think most people (especially parents) will recognise that situation, anyone who doesn’t, they will when they have children. Well step into the shoes of a parent with an ASD child who is minimally verbal or non verbal. Imagine getting no feedback from your child, imagine having a child who laughs and giggles when they bang there shin off a door stop and have a massive lump and bruise but just giggle where a typical child would be screaming. Now think about the scenario I outlined and remove any verbal communication.

Illness’s both major and minor come up with no warning, the initial verbal indicators are not present. The discomfort is not signalled, the pain might present the opposite response to what is expected. All of the normal indicators are messed up and jumbled. The signs and symptoms contradict each other. The first you know that something is wrong is a 39C temperature and a non responsive child. From zero to emergency.

On top of that ASD kids can be sneaky as well, we had a situation once with Tam where every time we gave him a drink he was finding a way to dispose of it. We were totally unaware he was doing this. We were totally unaware of the reasons why he was doing this. He ended up in hospital dehydrated. How you ask? Well if a child has a sore throat you hear it in there voice and you would a administer some medicine and or ice cream. What if the child is non verbal and there throat hurts and keeps being given a drink and it hurts more when they drink. What if their mum or dad makes them drink and it hurts, this little feedback loop without further information does not go well. No visible physical indicator of trouble, an invisible problem occurring and danger close approaching. It does not take long to become very ill if you are getting no fluids.

It only took a couple of hour at the hospital to get him rehydrated and a physical struggle with several member of the nursing team for the doctor to see he had very inflamed tonsils.
Inflamed tonsils is one thing, think of all of the childhood ailments in the situation I have described.Then think of those ailments slowly taking hold until they show symptoms. It is a continual worry and a continual effort to stay on top of Tam’s health.

Since Bev died I have had to deal with a lot of issues with Tam’s health brought on by his lack of sleep and general anxiety. As a single parent with no one else to say those immortal words - “oh, he’s fine it’s just……..” is difficult. The support and understanding I have had from the medical professionals I have come across has been both very understanding of the situation and very professional. They have listened to me, worked with me and reassured me when needed.

One day I will get back to the point of being much calmer in these situations but for now I have to accept the situation and jump between reassuring myself and panicking.

Recent Posts



Want to know more about us?