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
Hi, it's sad that some people have so little awareness and as a result so little understanding to make you feel so awful for not doing anything wrong, but if it starts to make you worry a lot about your daughters future then maybe try to keep in mind that nowadays there will also be people that do have the awareness and understanding to help your daughter and yourself, that was very different not so long ago. Not saying it's going to be easy, but at least there is help available now. Guess it will still hurt every time you get comments or looks of that sort, but perhaps once you have some kind of diagnosis it will become a bit easier to cope with that.
Anyway, for now, could you perhaps just tell someone like that woman that your daughter is autistic? Just that, no PDA (most people will never have heard of that) or trying to explain the issues (because many people think they are optional). Even if she doesn't have a diagnosis yet (and you can't be sure that's what it is until she has been assessed). It's not something you can use for people staring and so on, but if someone comes like that then just this one word may stop them and they may quickly walk off. Don't know how you feel about it, but in situations like this it may help to stop others from making them worse.
Take care, hope you have a friend or relative you can talk to about this. Try to do that, even if it's just one person out of many, it would make negative comments etc. from the others matter a lot less.
Thank you for your reply.
I did tell this lady that Abbie is autistic because as far as I'm concerned she is and I even tried to explain PDA but it made no difference whatsoever to her! Maybe she was embarrassed by that point but I really thought she would stop once I'd said that Abbie has a condition.
Thank you for your advice and kind words