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What do I call it?
  • When my daughter gets anxious and displays angry/upset/unhappy/whatever behaviour, what do you call it?

    To the 'outsider' who doesn't realise she has PDA it's a tantrum/paddy, but I know it isn't so don't want to call it that.

    It's not an's a what???

    Please help, I'd like to keep a diary of her behaviour so that I can look back and see how I handled a particular situation and if it worked etc, but I can't think of a word to use when my daughter gets unhappy....
  • Pamela
    Posts: 205
    Olivias behaviours are like that and I put it down to panic/anxiety attack. They always happen when she is anxious about a situation or environment. Her behaviours then escalate until they crescendo and she is then left exhausted. If you are asking what you tell complete strangers looking on? I tell them nothing...they are not really that interested anyway and my energy is being used up to help Olivia overcome what ever it is that is causing the behaviours in the first place. Hope this helps. :wink:
  • Amanda
    Posts: 281
    We use the term meltdown. Seems to say it all.

    I don't understand why you can't see the parents sction honey, it would be a better place for you to post as it can only be read by members :)
  • Yeah! I like meltdown! It certainly fits.

    Will try the parents section again, it's not impossible that I've been trying to get into the wrong bit.....Frazzled mummy!
  • Nope......It's isn't my fault!

    Makes a change I must say! Am off to investigate further and check out the link you so kindly posted.....
  • Pamela
    Posts: 205
    are you actually logging in? I know when my hubby has refragmented the computer all the sites I am a member to doesnt remember me and I have to log in and tell it to remember me again
  • webbwebb
    Posts: 2,593

    I also use the word meltdown, I find it helps me to react to my son better than if I were to use the word tantrum(that's what other people think it is!).
    When I'm with members of my family or very close friends I just deal with my son in ways I know work, like getting him to a quieter place or taking him home or restraining him, they know that I can deal with him best so they understand my techniques.
    If we are in a public place I deal with my son in the same ways and try very hard to ignore everyone around us who may be stareing or making judgements/comments.
    If a member of the public demands to know what is going on(because they have been injured by my son or had property damaged) then I tell them that he has Autism, or you could say she has a developmental disorder:although I'm not sure they would understand what that meant but it may take them aback and make them shut up!
    The only other thing I do is to use the NAS cards. I keep them in my purse and should my son meltdown in public and someone wants an explaination I haven't got time to give, I pass them one of the cards, which gives a good explaination and it looks very official! They are available from the NAS.
  • NAS??
    Sorry to appear thick......but I don't know what that is!

    I know that people think she's a spoilt brat as that is exactly what it looks like but I couldn't give a hoot what they think. However, the idea of being able to educate the "tutters" in the supermarket is a wonderful idea!
  • Amanda
    Posts: 281
    National Autistic Society hun :D
  • webbwebb
    Posts: 2,593

    Really sorry!

    NAS - National Autistic Society - (you can order the cards from the web-site, on line, I believe).
    Our children suffer so badly with anxiety but people can't see it, maybe they think children don't suffer with anxiety and panic, maybe they think their too young! How naive they are!!!
  • Pamela
    Posts: 205
    I have said to people before that Olivia has 'autism' just because most people have heard of it. Quite often though their response is 'but she can speak!' I think a lot of people think people with autism are mutes and are in their own world or that they are like 'rainman' Olivia is like neither. I also use the word 'meltdown' but again, without sounding negative, the word 'meltdown' is used by many people whose 'typical kids' are only having the 'typical' tantrum. It is very hard to describe to people that dont know Olivia exactly what is happening with her. How do you explain the extreme emotions that run through her head? How do you explain to people why Olivia will approach them and start touching them and talking inappropriately to them? How do you explain why she is taking her clothes off and exposing herself? How do you explain why Olivia will be a sweetie pie one second and then attack someone physically the next? How can you expain any of that. When all this is happening to us out in public I consciously gain 'tunnel vision' and my sole mission is to get Olivia away from the situation that has caused the meltdown which ever way I can. We are fortunate that we live in a very small town and most people have had some kind of 'Olivia initiation!' They are very understanding and will do anything to help. Even if it is only me asking them to take a few steps back and carry on with their day.
    When we are in different places that are not familiar to Olivia and we are up against complete strangers I really dont see why I have to explain in the first place. As Olivia has got older it is maybe more obvious physically that she is disabled. But for many years Olivia looked just like any other kid! A parent of a child with Downs or that is profound and severly disabled NEVER has to explain why their child acts the way they do. I think the 'invisible disability' is the hardest of all.

    There....I feel better for that! :wink:
  • mango69
    Posts: 967
    Here here Pamela - how all that rings true. I also just tell people Max is autistic - its just easier and people back off which is exactly what I need them to do when Max is kicking off or about to kick off if I dont handle it well. It is very frustrating that he doesn't have a little sign above him which says "Dont mind me I have difficulties with doing as I'm told cos I need to be in control but don't blame my mum, she is a good mum and she's doing the best she can in the circumstances!!" Hmmmm...... if only life were like that. I just wish I had more of the "I dont care what people think". I think as time goes on though this is developing!!!! Incidently getting back to the thread, I also call them meltdowns but I used to call them mega tantrums to distinguish them from your average tantrum. I prefer meltdown because it describes the state of mind. We also rate them 1-10 where 10 is complete unadulterated meltdown not dissimilar to caged lion! It helps me and my other half give each other support when we are apart. We had a 10/10 the other night after 2 wonderful weeks at school - I suppose that figures.

    I also feel better after that rant!
  • Hi,
    I usually tell people my kids are autistic if they need to be told, but the amount of people who turn round and say "the look fine to me" drives me nuts, what do they expect a child with autism to look like? " horns on their head and a tail with a spike at the end??
    It would be interesting to do some market research into what the general public knows:

    a) what is autism?
    b) what is PDA?
    c) what is PDD
    d) what is aspergers?

    Would it get us of the hook if we said "oh my child has PDD, PDA or ASD instead of us saying they had autism? Because maybe people in their ignorance would just say "oh right, i see" becasue they may not know what each of these terms mean. Whereas many seem to stereotype autism and think - child who can't talk sits in corner and rocks or stares into space, looks vacant. So if that is their understanding of it, well no wonder they don't believe us when we tell them theyre autistic eh!

    What do u all think?
  • I will never describe my son as being autistic - although I do tell people he displays some autistic type behaviours. Last night by chance I met an outreach teacher who had worked with him and said that it was interesting that he behaved worst for those people who thought he was autistic and she said "Of course, because they will have been doing exactly the wrong thing." For years I said communication and behavioural disorder and even now, just to say PDA doesn't describe the difficulties he has with language so it isn't enough on its own, depending on the situation.

    I have ME (myalgic encephalopathy) and I know the incalulable harm that has been done by people using a blanket term of chronic fatigue syndrome. ME isn't a perfect description but it better describes my experience, the same with PDA for my son. I find the 'pervasive developmental disorder' umbrella quite useful as it does get people thinking along the right lines (although it makes it sound as though he'll grow out of it) and PDA does sound terribly like a humorous politically correct joke for lazy or blood minded doesn't it?
  • As we are newly diagnosed with PDA I have to admit to being rather scared of the word Autism. Is that an awful thing to say? Probably. The thing is she ISN'T Autistic and I think that we'll just get labelled that way which isn't good for her and isn't good for the children who are autistic......

    I read somewhere that a mum and her little boy were in a cafe (one they didn't know) and her little boy was anxious and as the other diners were getting their attitudes out she simply said to the room "he has a disability". It shut them all up. I don't know if it would work all the time and I resent having to explain my daughter to a stranger anyway!
  • mango69
    Posts: 967
    Yes, I understand why people dont want to use autistic, and I completely agree that it does nothing for educating people, I guess its just what people feel most comfotable with - Max has not been to the EN centre yet and when we go, if they decide he is PDA then perhaps I'll feel easier using that. I did describe it to someone once though and they said "Oh so he's a refusenik" and I just thought - why bother!!!!! - I guess rather than go through the explaining of the term etc its easier for me to use autistic in the hope they know something and back off. It would of course be much easier if we just didn't care what other people think!
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