Special needs require understanding, not restraint
Acting as a family advocate for someone with special needs can help defuse potentially volatile situations, says retired nurse Vanessa Martin, an RCN fellow and trustee of the RCN Foundation.
Acting as a family advocate for someone with special needs can help defuse potentially volatile situations, says retired nurse Vanessa Martin, an RCN fellow and trustee of the RCN Foundation
My son, now 49, is on the autistic spectrum. He can speak but talking causes him stress, so he is apt to agree to every question so as to end the conversation. Medical staff often presume his positive answers mean he can make decisions for himself.
But he cannot communicate if he is in pain or where the pain is. He just becomes anxious and distressed. One reason my husband and I applied to become his legal guardians was to have more say over medical decisions affecting him.
Any procedure that Jonathan needs has to be described or illustrated so that he understands, feels in control and can cope. A difficulty arose when Jonathan needed three teeth extracted. I had explained to him at great length what would happen. As he was being sedated, the surgeon told me there were two other teeth that he also wished to remove.
When Jonathan came round I could hear that he was upset and he was very distressed when they brought him out. Two large men appeared in the doorway and approached Jonathan ready to restrain him. I told them firmly not to touch him.
My husband quickly produced a pad, pencil and calculator and Jonathan, who loves maths, immediately calmed down.
As we returned home Jonathan was visibly angry with me, because the pain was different from how I had described it.
People with special needs require the advocacy of someone who has lived with them and who knows them well, often a family member. Including that person in the medical decision-making and in their care plan should be automatic.
To improve the care and experience of patients with special needs the explanation about a procedure needs to be literal. If it is misleading then someone like Jonathan will lose confidence in those involved.
It is a common fallacy that the behaviour of non-verbal autistic people needs to be controlled, and that the response should be to restrain, sedate or punish them. This makes children and adults vulnerable to abuse. Distracting them and then trying to identify the reason for their stress is essential.