Hello, my name is Marie. I have 2 daughter's, the youngest is Abbie (3) and we know there is something wrong. We have an appointment on the 27th Feb and I hope this is the start of getting some help and understanding and hopefully a diagnosis. After 18 months of research I have discover pathological demand avoidance, the signs and symptoms explain Abbies behaviour perfectly. Life can be extremely difficult, everything you ask of Abbie becomes a drama. Most days getting her to the school to take my eldest daughter is extremely challenging. Her meltdowns are extraordinary and quite frightening. She had a terrible episode in Sainsbury's yesterday, and after getting her out of the lift she laid on the floor and screamed at the top of her lungs. If I attempt to touch her or even carry her when she's in a state like this she will hit her head on the pavement so I have to be very cautious in my actions. If I do manage to pick her up I can't hold her for long and could drop her. I was dealing with it well, I was calm and felt she may be coming out of it slightly, then this woman appeared and starting having a go at me for allowing my child to be on the floor and making so much noise. She told me that I was doing everything wrong and need to pick her up immediately. I calmly explained that I couldn't do that due to Abbie hurting herself and then this Woman tried to pick Abbie up. I asked her repeatedly to leave me alone to concentrate on my child and that she was making me emotional and to please leave us alone. She went on to tell me that I shouldn't be dragging a small child round the shop and that they get tired and that this behaviour wasn't normal and must be my fault. She proceeded to tell me how she has children and grandchildren so she knows all about it. Eventually she left after I used a few harsher words. I was left on the floor in tears. I can't take much more of the filthy looks and ignorance that I receive, sometimes even from friends and family as well as strangers. I feel so alone and lost. I've never written on a forum before but I really need some support and it doesn't feel like there is any in my world at the moment
I have had lots of experience with this. I got to a point where I don’t feel I need to explain to everyone my child has autism. I have had people give me looks, made comments, call me a bad mother and even my child is naughty. My approach is simply pin them with a hard look and say I am the parent here and this is what is best. You don’t know my child so back away. I got this attitude when my child was having a moment in nursery and the qualified teacher was using the term naughty. I am about to say something that probably would not have been nice when the EdPsy stopped me and simply told the teacher there is something else going on here. I don’t know sign language except for maybe 1 or 2 which I used, not really to my child but it keeps the know it all wolves away.