A holiday experience reminds us that when it comes to helping individuals on the spectrum, some health professionals get it and some don’t.
On December 30th, my son suffered the first seizure of his life. Three hours later, he suffered his second. After two days and a battery of tests at Sacred Heart Hospital, it was determined that his seizures could probably be handled by proper levels of medication without any lasting trauma. (Very good news, considering the litany of scenarios that ran through my mind when I first saw the street in front of his house jammed with aid vehicles and EMT’s). But that horrifying, hectic, fatiguing 48 hours reminded me and my wife once again of something we learned early on in our nearly two decade journey with our son through the world of ASD – when it comes to caring for individuals with autism, it’s clear who gets it and who doesn’t.
The following is a chronological step-by-step listing of individuals (caretakers, first responders, nurses, doctors and techs) and how they handled their encounters with my son on December 30th and 31st. Each is followed by their grade [get it/don’t get it]. If it helps, think of this as pass/epic fail.
His staff during both seizures – calm, effective, empathetic – get it.
EMT’s in home – overwhelming, far too concerned with procedure – don’t get it.
EMT’s in transport – Caring, helpful, able to adapt to my son’s needs – get it.
Emergency Room, adult side – Doctors and nurses, confident, competent, helpful. – get it.
Emergency Room, pediatric side – not helpful, annoyed (many sighs, frowns and rolls of eyes), couldn’t stop staring, blamed the system for delays and setbacks, worst experience of the entire two days – don’t get it.
Eighth floor nurses – helpful, underestimated his behaviors but quickly learned to value our assessments – get it.
In-hospital transport – careful, fun, attendant – get it.
MRI nurses – helpful, listened to our advice on his behaviors when waking up from sedation – get it.
Dr.Hasan – quick, direct, caring – gets it.
Hospital Doctor doing rounds attempted to interrupt EEG procedure (even after being asked by one of the techs to wait a moment), reacted childishly to being told her paperwork would have to wait. – doesn’t get it.
My son’s doctor – got him admitted quickly during a code red – always gets it.
I really didn’t want to start my new blogging year with a negative post, but hopefully, those who don’t get it will learn from my words or, at the least, re-visit the reasons why they joined their profession in the first place. And for those of you who do get it, words can not express our gratitude. Thank you.
Edited by Mjollnir 
You had more gets it than don’t get its so that is a positive.
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Yes, there are so many amazing people that help my son every day. We are very grateful for those that “get it”.
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Sorry to hear your year ended on such a note, but I’m glad to read your report on the services. We endured three years of similar experiences with one grand daughter. We are fortunate that my son and his wife are both excellent, dedicated paramedics. In their village, the rest of the Emergency Responder staff has first-hand information from working with them. I issued a similar style of grade reports to the local hospital staff the first three years of the ordeal – and they actually thanked me for them on the third year. Best wishes for a bright new year!
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We are always seeking opportunities to educate police, fire and emergency workers on ASD behaviors. It is a wonderful experience when they are open to the process. Your involvement is impressive. Thank you for your response.
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Thank you for sharing this; I find it most informative and positive that so many “did get it” and others still need to learn. There should be a patient feedback at all health care facilities…this is how we will learn. May I share this on my blog Stigmahurtseveryone.wordpress.com?
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I agree and yes, absolutely, you can share this. Thank you for reading it.
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