There must be a better way to help autistic people avoid sustaining trauma during medical procedures.
It was recently necessary for my youngest son to undergo essential and emergency surgery with little to no prior warning. This sent him spiralling into both autistic shutdown and meltdown. He entered rapidly into pure “fight or flight” mode, could not process any information in relation to the need for surgery and reacted with spectacularly resistant and terrified behaviour.
Due to the nature of the injury there was no option to “wait and see” and, as parent, I made the decision to follow medical advice and proceed against the wishes of my son.
Part of my son’s autistic presentation is the extreme need to manage his anxiety by retaining control over all aspects of his life – abruptly working against this will always provoke dangerous levels of distress for him.
The management of this particular incident created trauma upon trauma due to multi-person restraint and forced sedation.
“This is kidnap. You are taking me from my home where I want to be.”
“You’ve stabbed me!”
“What happens to me, where do I go? Am I still me? But I’m not in control.”
Although there was much professional discussion around “protecting his future mental health”, ultimately, my son suffered. The physical trauma sustained – stitches and swelling – retreated quickly but emotionally he is broken. Pale, tired and switched off from the world. An unwillingness to leave the home even for his beloved dog. Veering between restlessness and silence. Shouting out “no, no, help, help” in his sleep…
As his Mum I cannot shake the feeling that I have failed him but neither can I envisage how he would have complied with the medical assessments and pre-surgery procedures without the horror of sedation. And so I am considering – what are the alternatives and how can multi-agency response to emergencies become more tolerable for autistic people?
For my son, he was surrounded by emergency and medical personnel constantly for hours. He was given no opportunity to work through his meltdown naturally and the non-abating conversation about him and invasive physical contact only exacerbated his distress. Good autism practice and autism knowledgeable staff were lost in the commotion of “emergency”. Higher ranked staff simply did not make way for the good autism skill set of more junior practitioners. I watched on in shock as an anaesthetist attempted to tickle my son into compliance without any understanding of how excruciating that would feel for him in the midst of heightened distress.
What was a low arousal room with gentle mood lighting quickly became invaded by a multitude of noise and smells when attended by eight other people.
Professionals and their strategic approaches rapidly interchanged – one surgeon drew pictures to communicate, whilst another stuck to dispensing facts, whilst another simplified their explanations and patronised my son’s intellect. One policewoman spoke in a gentle tone while another was loud and used “banter”. Consistency of approach was replaced by a whirlwind of panic – it isn’t difficult to understand why my son could offer nothing more than panic and refusal in return. Without the respite from over stimuli needed to bring about natural calming and the increasing urgency of surgical need there was no other choice but to sedate my son.
What is particularly frustrating for a parent is knowing that my child has a legal document that details exactly how his needs are best met – his educational and health care plan (EHCP). This one document should be enough to inform professionals working with my son. As should the Nice Guidelines for Autism which state that all health professionals working with an autistic child should have autism awareness training. Unfortunately the EHCP is too lengthy to be of use in an emergency situation and the Nice Guidelines are just guidelines.
Some hospital trusts encourage autistic service users to complete a hospital passport detailing any particular, individual preferences. The issue is that there just isn’t enough consistency among individual sites and people – autism “best practice” is still too “hit and miss” to be of any great benefit.
It seems that the foundations of autism best practice are not yet strong enough to transfer into emergency settings. There needs to be national protocol specifically for urgent and emergency needs and, dare I say, that these need to be legally binding.
I would really welcome a dedicated low arousal, sensory friendly and safe room in each and every hospital for all autistic people in need to access. Perhaps key autism awareness information could be condensed into an always accessible reference document for all hospital staff. Perhaps individualised “hospital passports” (detailing individual needs) could be attached to electronic health records – ensuring the correct information is available to all hospital staff as and when required.
No person should be made to feel terrified and traumatised by medical interventions just because effective autism communication was not employed.
#autism #Autismawareness #autismbestpractice #trauma #NHS #SEN #pathalogicaldemandavoidance