Sensory issues with heart teenage son

[Disneyprincess1973]

Hello, my son is autistic and turned 14 in April. There have been various issues over the years that I have dealt with, but since he turned 14, there is something going on that I've never seen before. He can hear his heart beating in his chest and there's been a lot of tears because he thinks he is going to have a heart attack 😢. For the last 6 weeks or so, he has been so miserable and crying and having meltdowns because of this issue. I have taken him to the doctor a few times and he has had 2 ECG's which were fine. He has had his blood pressure taken and his pulse taken etc and everything is fine. As well as the heart issue, he says he has pains all over his body, almost like muscle pain. He has also been getting tremors where his whole body just shakes involuntarily. He is very emotional. He is usually such a happy smiley cheeky boy but we haven't seen him like this for the whole 6 weeks. He is having blood tests soon for these body tremors and muscles pains and twitches to rule things out basically.
Does anyone have any experiences of this first hand please? My brother said it could be growing pains? I was thinking it might be sensory? Thank you in advance for any advice anyone may have. I am trying to deal with it the best I can but if there is a better way of dealing with it, I will gladly do it.

With the pain, tremors and the sensation he has with his heart beating, I would request a referral to the hospital. Before going down the sensory route, I would want to rule out a physical cause.

He has already been in hospital twice for this and been told everything fine. Sorry, I forgot to mention that. I have been trying to eliminate things while trying to help him. He is very anxious too, worries about everything and has always had trouble going to sleep because he can't switch off. These are autistic traits that he has always had. 13 years old, no problems apart from the usual things but 14 years old, everything got a lot worse. I just wondered if any parents of autistic teenagers have come across this too, ie. the pains etc.

I don’t have personal experience of the heart problems, but sensory processing differences related to autism can affect how autistic people experience pain. Has DS had a sensory OT assessment? How are things at school? Is DS receiving any support with his anxiety and does he take anything to help with sleep? How is his eating?

DS had an assessment at age 3-4 and was diagnosed with moderate learning difficulties. Then at age 7, he was diagnosed with autism. He had speech therapy from age 3 to age 8-9. He was under a paediatrician from age 1 to age 7 but that was for febral convulsions and he was actually on medication for his fits. He had his last fit at age 6, thankfully no more after that 💙. So basically, he hasn't had any other assessments apart from ones above. DS is in homeschool. He had various issues in school and I was often called to the school to pick him up because he was inconsolable and I have found homeschool has been incredibly effective. He feels safer and has made amazing progress in his learning. No, he doesn't take anything for sleep and I am the one who helps him with his anxiety by talking to him, playing games with him, trying to keep him occupied. His eating used to be extremely limited years ago, only ate certain things but he has come on leaps and bounds. His favourite food is any pasta dish, lasagne, spaghetti bolonaise, mac and cheese etc but he will eat roast dinners and lots more. Since this issue, the eating has suffered a little with him being sick but that has now stopped. It's his anxiety that caused that. I have since read about autistic boys and puberty and they do have a tough time apparently 😢. I spoke to my sister- in-law and my autistic nephew had the same thing going on where they were back and for to the doctors for the same reasons as DS, and each time got given a clean bill of health. He eventually had to accept that it was puberty causing all these things. So it's sounding more and more like this is what is going on with DS. Hopefully it's all puberty and it will eventually pass. Thank you for messaging me regarding this, I appreciate it.

A sensory OT assessment will help. Not all ICBs commission sensory OT on the NHS, but if your area does, it is worth a referral. If finances allow, there are independent OTs who could help.

Therapeutic MH support would also help. You could request a referral for that, or again in money allows look privately.

If it is something you wanted to do, you could go down the EHCP route and both of the above can be included in EHCPs. You can request an EHCNA even if you are EHE. The LA doesn’t have a duty to provide the provision in an EHCP if you EHE, but you would be able to pursue EOTAS/EOTIS if attending school was inappropriate.

I would also speak to the GP about a referral for the sleep difficulties.

My son constantly complains about his body being in pain. He has ASD with hypermobility and DCD, so we always assumed that the hypermobility causes pains that are amplified by his autism (higher perception of pain). My daughter is also autistic and hyper aware of and hyper focused on bodily functions and noises, like ear popping, sound of heart etc. She can get very anxious about these things, they can trigger either a panic-attack like meltdown or the anxiety is channelled into OCD behaviour.

Thank you, that explains so much 💜. I want you to know how much that has helped x