This is
Roscommon Mother's Story
My son, who has autism, finished secondary school in the summer of 2022 and from then on there were small changes that we first thought were OCD.
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In February 2023 we noticed more pronounced changes that led us to question epilepsy.
After 2 years of regression and constant questioning and research we have finally been diagnosed with Autistic Catatonia (by Colin Doherty MD FRCPI Consultant Neurologist).
We had spoken to many professionals, had MRI's and EEG's and still had no clear answers. Fortunately, I contacted Susan Crawford (after reading Tomás' story - I actually thought I was reading about my son) and from there we began the process of diagnosis.
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We had completed the Bush-Francis Catatonia Rating Scale before our appointment with Dr Doherty, so we were expecting the diagnosis.
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The regression over the past two years has brought about the following changes:
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Catalepsy: That's when he stays in the position we put him in and doesn't move until we tell him to.
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Echolalia: He echoes sounds made by someone else.
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Grimacing: Maintaining the same facial expression, usually with stiff or tense facial muscles, usually after relaxation when told to open his eyes.
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Mannerism: Motions or movements that could be normal, but done in an unusual or exaggerated way. Pacing/marching.
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Posturing: This is when he holds a certain position.
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Stereotypy: These are repetitive movements, constant walking "over and back" that don't seem to have a purpose. It may include finger play.
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Stupor: This is when he's awake but unresponsive to what's going on around him. People with catatonia often don't respond to painful stimuli, such as being pinched.
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Waxy flexibility: When he reacts with resistance to any attempt to change his position. Then the muscles slowly relax and the limbs flex.
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Loss of self-help skills: now in need of help with basic skills that were once no problem.
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Meals take much longer, periods of staring at his glass, he is much slower to move between tasks. It has also affected his speech - the little speech he had has become louder (shouting) and he has developed a stammer. As a result, he can no longer go to a restaurant or coffee shop.
Catatonia has meant changes for the whole family. There is a great sense of empathy between the siblings, so it has affected the whole family.