Hi everyone,
Worried mum here. My son is 16 and was diagnosed with autism at the age of 3. In September 2023, he was diagnosed with autistic catatonia.
Since this diagnosis, we have struggled with the support provided by NHS health professionals, largely due to a lack of familiarity with autistic catatonia. I was the one who initially raised the possibility of this diagnosis before it was taken seriously. Without meaning to sound ungrateful or disrespectful, there seems to be very little willingness from professionals to research or upskill in order to properly support him.
This has been incredibly frustrating for us as parents and devastating for my son’s mental health. More recently, his condition deteriorated to the point where he was at risk of being detained under the Mental Health Act. Rather than treating the catatonia, the local authority funded adaptations to his bedroom at home, including padded walls, to make it “safer.” I feel completely at a loss.
Has anyone had a similar experience, or can recommend any professionals or NHS services where their child has been well supported?
Does anyone have contact details for Dr Shah, or know how to access advice from her? Read her book and it’s brilliant. Literally my bible at the minute!
Any guidance, experiences, or suggestions would be hugely appreciated. Thank you so much for taking the time to read this.
