Sign In

Please sign in using the log in form at the top of this page or click here

Not a member

You need to register before you can start a new discussion or comment on a post.

Click the button below to go to our forum registration page.

In this Discussion

Welcome to the PDA Society Forum. Please take time to read the 'Forum terms and conditions', which can be found via this webpage:https://www.pdasociety.org.uk/terms-and-conditions and also in our NEW Forum User Guide: https://www.pdasociety.org.uk/forum/forum-users-guide-created
Messages in the 'General Discussions' category of the forum are visible to all internet users. You are therefore advised not to post anything of a confidential nature in this category.
Welcome to the PDA Society Discussion Forum. Please read our User Guide for more information and contact forum@pdasociety.org.uk if you would like to join one of our closed Member Forums for registered members only.
PDA information card
  • Lixina
    Posts: 289
    I'm thinking of carrying a card with me containing information about PDA, so I could hand it to people in an emergency when I'm unable to explain my situation verbally. I'd like you guys to read over the text I've written and let me know how you think someone who knows nothing about autism/PDA would react to it.

    Here it is:

    If I have handed you this card, it means I think you need to know about my disability.

    I have Newson Syndrome, a rare subtype of autism. Newson Syndrome causes mood/anxiety problems, difficulty with social interaction, atypical sensory processing, unusual motor mannerisms, and obsessive behavior. It does not lower intelligence (I have an IQ of 137), but causes difficulty with specific cognitive skills such as planning, facial recognition or time sense.

    Under stress, I have a tendency to loose skills such as speech or motor skills. Other times, I show high anxiety and become extremely defensive, inappropriately fearing attack from other people. It is important to remember that I do not have control over this behavior, and can’t stop it at will.

    If I am in a noisy environment or one with flashing lights or high sensory stimulation of another kind, I need to escape that environment as soon as possible. Due to stress-related shutdown, I may need to be guided to a safe, quiet place. Do not touch me without warning, instead offer me your arm for support or simply ask me to follow you. I am more likely to be able to say ‘no’ than ‘yes’, so lack of response should be taken as agreement. Also, sometimes I am able to write but not speak, so if you offer me a pen and paper I may be able to write my replies.

    Do not crowd me or stand over me – if I am on the ground, get down to my level to talk to me. Speak in a calm, soothing tone. Rather than giving me a direct command, offer me a choice between equally attractive options. Don’t block my way to an exit, or I may feel trapped.

  • Moose
    Posts: 1,843
    Hi Lixina

    I think this is an excellent idea and could be a good tool for your confidence in difficult situations. I have deliberated over doing something similar for my son, but have hit certain potential pitfalls.

    I have no wish to over play my son's difficulties, neither do I wish to patronise him with requests to handle him 'oh so gently'. If I over play his abilities do I undermine his difficulties.
    It is not so much that I don't know how he needs to be handled, but that it has taken me a life time to understand the complexity and contradictions of PDA. If I try to put these into a nutshell, I fear that the receiver of the card will make judgements that could hinder my son, rather than help.

    For example stating that my son is intelligent, could be interpreted that he then should be capable of behaving rationally in a stressful situation. By explaining too much you give people the option of thinking " that's just pandering to the person" or " I can see that this person has been wrapped in cotton wool".
    Too many people you meet are self appointed 'behavioural experts' and immediately make judgements about you or how you have been raised.

    I would therefore suggest you pare information down to the bare minimum. This card would be for emergency situations and so only requires enough detail for them to help you, they do not need to try to understand you.

    Try condensing as much as possible and provide bullet points of 'do's' and don't's'.

    Hope this helps and I hope I don't come across as critical. I know how hard it is to do, I've tried several times and always end up abandoning the idea because I have not been able to get it right so far.

    neville
  • webbwebb
    Posts: 2,558
    Hi

    I too think it is a great idea.

    I am wondering if you should have 2 types of cards?

    The one you have already done is great and would be very helpful in some situations.
    I also agree with Moose that you could have another that is more brief and contains just a few bullet points.

    I used a very similar technique when my son was younger.
    If people in a shopping queue made horrid remarks about my sons behaviour I would whip out my "short version" which said he had a pervasive development disorder etc. This would shut them up and help them to make less judgements about children in the future.

    If I was in a more difficult situation that required more info I would give them my "longer version". For instance one day I was at a theme park with 2 of my children. Matthew (PDA) ran into a gift shop, saw a toy he liked, then ran out to show me the toy - the shop keeper chased after him, when they both got to me, the shop keeper said "Hey, your son just took that out my shop", Matthew turned round and kicked her in the shin!!!
    This situation required the long version card! Thankfully this avoided the shop keeper calling the police!
    Because I had prepared the card, had it in my pocket, the shop keeper and Park Manager knew my son had a disability - I hadn't just made it up?

    I'm not sure if you want to adopt this idea of 2 cards but definately do a short version in case of any emergencies.
    I have been using cards(credit card size to fit in my purse) for about 12 yrs and it has got me out of many a tricky situation and helped Public Awareness!

    Paula
This discussion has been closed.
All Discussions