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Unheard

elsie

I was diagnosed with autism a female in September 2025 I have been completely invalidated for this diagnosis no one believes me even though it was done by the doctors. I have care workers who clearly have not done there Oliver McGowan training that have. No idea about autism and are not listening to my triggers or anything. I am constantly in overload and smells, touch , taste, noise and lights are my triggers they called a ambulance today as I was in complete meltdown but the care agency are saying it’s outbursts which there clearly not. Why can’t we be understood and heard and listened to when we have said this is what happens. I’ve also asked for women only and there constantly sending men also strong smells including creams, detergents, washing gels, shampoo, perfume and aftershave are a massive trigger and have asked that this property mine is a non scent free property I’m being ignored lied to and manipulated. I don’t know what to do anymore as I’m being unheard and my voice not respected eg wishes preferences and choices. Has anyone else found this with a care agency. I’ve asked to change care providers but the social worker has said it’s them or no one at all I feel bullied into having this care provider who have lied and written and said false reports about me. We have asked for a care provider to be autism qualified and trained and trauma informed. 

  • in reply to elsie

    If you don't know the agency that they use the name, perhaps next time a carer comes you can ask them where they work. You could call and speak to a manager yourself and tell them the carers who come to you should be trained and see what they say. I had occasion to call the managers of the agency that I used at times.

  • in reply to RachelO

    They are not trained nor have they done Oliver McGowan training the director has said this to me himself 

  • in reply to elsie

    I have looked into it and if carers are working with you they should have some training, although the McGowan training is not mandatory but preferred. Have you asked your social worker if they had any training in autism? 

  • in reply to RachelO

    No I was not put in a ambulance as the paramedics could tell I was having a meltdown so did not need to be going to hospital 

  • I had carers in 2023 early 2024 probably. It was for another condition then but i am diagnosed with autism also though. None of the carers were trained in my conditions and I paid for them out of my own benefit. If you are not happy with the service and as your social worker has stated that is what they will provide you, if they are paying for this. May be you look around yourself and pay privately if you want a better service. 

    It sounds like something else could be going on with you as well I have moderate to severe sensory and a trigger is not likely just to put me in an ambulance.