Autism and illness

4 May 2016

Dear friend,

Having a sick child is a nightmare for any parent. Your little love, your pride and joy is poorly and with every fibre of your being you want them to be better. I've heard people say (me included) I wish it was me and not them. Add to that the mess, the washing, the noise, the exhaustion all while your heart is feeling raw and no wonder it is one of the most stressful times for parents.

Having a sick child who also happens to have autism adds a different dimension. If you have an autistic child this isn't always so straightforward...

Most of the time I don't really notice my sons autism but sometimes it pops up and bites me on the arse bottom. I didn't notice that my son was ill. I'm the worst mum in the entire world! How can you not notice your child is sick?

But add in autism and it is not so easy!

The big lad had been complaining of pain in his throat for a couple of days. It isn't that I ignored this, I did ask how he was feeling and got the answer, fine. There was my first mistake...
  • Communication - Autistic children have problems with communication. It can be really difficult for autistic children to identify how they are feeling and then tell someone. (These visual pain scales are a great way to help autistic children better communicate how they are feeling.)

Being an autism parent means I have to be a kind of health detective and learn how to read the tiny signs that something is not quite right; not sleeping, not as active as 'normal', not eating the same. But he was sleeping and he was eating the same. He had come into our bedroom during the night and I'd given him calpol and a drink. Mistake number 2...
  • Higher threshold for pain - I have lost count of the times when I have put the big lad in the bath and discovered a really nasty bruise somewhere, one of those deep purple stingers that really hurt. Ask him what happened and he won't remember, he appears to hardly notice it. Sometimes he doesn't notice pain...
  • Hyposensitivity - The big lad has hyposensitivity, this means that the messages that tell him about his body seem to get lost somewhere on their journey to his brain. That is why he finds it hard to sit still. He wobbles to feel where his foot or hand are to give his brain a jolt. When he was younger he used to fall off his chair, a lot! When he's ill sometimes he doesn't know exactly what/where is hurting and doesn't notice until it really hurts. For example he often won't announce his stomach hurts until one minute before he vomits (this is interesting, I'm now good at catching!)
In the morning he didn't feel warm so I didn't take his temperature - he hates that. I gave him some more calpol and asked if he felt OK for school. I made a mental note to take him to the Doctor to get him checked out after work. Mistake number 3...
  • Hypersensitivity - many autistic people also have hypersensitivity. The big lad doesn't like having his hair/nails cut, or having thermometers in his ears and needles are a massive no! When he was younger this could be interesting especially when a Dr wanted to look in his ears/mouth, now he tolerates it...
When I came home from work he had two friends here, they were playing on the computer, laughing and joking. Hubby and I made a remark like; Well there doesn't seem like there's much wrong with him now! Mistake number 4...
  • Hyperactivity - I have read accounts of autistic children just crashing when they are ill but the big lad is the opposite. He keeps going and it is super hard to get him to rest. He will go about his day as normal and then as soon as it is time for lights out the problems come out. It is as though only when his body is quiet can he process the information...
I woke on Thursday morning to the sound of vomit! Panic stations...
  • Emetophobia - a fear of vomiting. The big lad is really scared of being sick and goes into a panic. He hates not being in control of his body and the feeling this gives. Trying to get medication, a drink anything into him at this time is a nightmare! Many autistic children are at particular danger of dehydration during sickness...
I rang the Dr and off we went...
  • Fear of Drs - for quite a while (after a bad experience with an injection) the big lad was terrified of even going past the Dr surgery, it took a long time for him to realise that every time you go to see the Dr you don't need a shot. He still asks sometimes, are we having a prick (injection) when we need to see a Dr... For him it is all about trust and if he doesn't trust you then he is not going to open up and tell you what's happening. 

What do you do when your child either doesn't feel or doesn't register they are ill or doesn't have the words to tell you? 

Autistic people's lack of communication surrounding illness can have more serious consequences as discussed in an article in the guardian in March 2015 entitled: Autism and ill health: how to spot the subtle signs that something is wrong
On average, people with autism and learning disabilities die between 10 and 20 years prematurely... Dr Pauline Heslop, the lead author of a groundbreaking UK study into premature deaths, said: “The unacceptable situation remains that for every one person in the general population who dies from a cause of death amenable to good healthcare, three people with learning disabilities will do so.”

On average people with autism and learning difficulties die between 10 and 20 years prematurelyWhat can we do to address this problem?

Drs have noted that more attention must be given to the thoughts and opinions of advocates when assessing autistic patients. Advocates often notice subtle changes other's don't. Parent's often have this inkling that something isn't right - don't be fobbed off!

Campaigners ... encourage the use of health or hospital “passports”... They give vital personal history, medical information, sensory idiosyncrasies and advice on how the patient might behave if stressed by their surroundings or illness. 

What is obvious is that there needs to be more information about how having autism can have an impact on general health and more training for health professionals. Every time I take the big lad to a new Doctor I need to explain that he finds it difficult to say what is wrong with him and that he feels pain in a different way. Some Drs listen better than others! I think having a health passport would make this much easier for everyone involved.

Thankfully the Dr today did listen to me and did show understanding (except when she stuck the stick in his mouth without warning him first, basic error). It seems the big lad has a very nasty throat infection. How did I/he/we miss that?

OK, on reflection, I know I am not the worst mum in the world but that is the first thought that entered my head when I realised he was really sick. It can be very hard to recognise and read the signs. I am lucky to have lovely friends who jumped to my defence immediately when I had my wobble. Even super mummy gets her cape caught sometimes, was one amazing response!

I can teach him how illness feels by giving him the words to use. Next time he tells me his tummy feels hot I will model him the language, you have pain in your tummy so he starts to verbalise his feelings better and realise that means he may be sick. Any other tips then please let me know!

I have my fingers, toes and eyes crossed for a speedy recovery.

My Healthcare passport is available to download from The Royal College of General Practitioners.

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