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PDA, Selective Mutism or both?
  • JG14
    Posts: 1
    Hi, I have only discovered the existence of this condition recently. My son, 9 has been diagnosed with Selective Mutism and has some interventions in school to help with this.

    My problem is his increasingly difficult behaviour outside of school. I have always put this down to anxiety he feels during the school day and it being released when he's at home. However his meltdowns are quite bad and more often we're finding him refusing to do things like get out of bed, have a wash/shower. Put the iPad away when asked to - despite giving him timescales and a 5 minute warning. The result is frustration, anger, shouting and often physical outbursts if he is forced to cooperate.

    He also keeps complaining of headaches in recent weeks. But often when we're having a difficult conversation with him, he'll hold his head and claim a headache.

    Having read about PDA, my son shows some, but not all the traits, but I don't know how this would sit along side SM? The thing that relates the 2 conditions is obviously anxiety, but SM means the person physically can't speak even though they want to, but I presume Mutism within PDA means the person is refusing to speak in a specific situation.
    Does anyone have any experience of anything similar? I have a meeting with the Educational Psychologist at school on a Friday and not sure whether to mention this to them? At school behaviour is very good and he only speaks to his friends plus a few adults in school.
  • Interestingly there is selective mutism and elective mutism. I assume selective is mutism in particular circumstances through either being unable or being too scared and elective is just 'choosing' not to speak fullstop, because of underlying difficulties.

    http://www.communitycare.co.uk/2011/05/20/battling-elective-mutism-in-autistic-children/

    I read that selective mutism rates are around 7% so quite a lot higher than the rates of autism, but that still doesn't mean there is no connection because not all selective mutism will be because of the same reason. As it is an anxiety-based condition and rates of anxiety are higher in the autistic population, it stands to reason that there will be the same trigger and also that there will likely be higher rates of selective mutism in the autistic population than the NT population.

    There is an NAS forum thread about Asperger's and selective mutism here: http://community.autism.org.uk/discussions/health-wellbeing/health-problems/selective-mutism-any-advice

    Not all children with an ASD show all the traits of the condition, children are not text books after all. And sometimes they may display a trait in a less obvious way. It's about how the condition presents in the child not how the child meets the list of traits.
  • Vix78
    Posts: 1
    Just
  • Holly59
    Posts: 2,381

    JG14 said:

    Hi, I have only discovered the existence of this condition recently. My son, 9 has been diagnosed with Selective Mutism and has some interventions in school to help with this.

    My problem is his increasingly difficult behaviour outside of school. I have always put this down to anxiety he feels during the school day and it being released when he's at home. However his meltdowns are quite bad and more often we're finding him refusing to do things like get out of bed, have a wash/shower. Put the iPad away when asked to - despite giving him timescales and a 5 minute warning. The result is frustration, anger, shouting and often physical outbursts if he is forced to cooperate.

    He also keeps complaining of headaches in recent weeks. But often when we're having a difficult conversation with him, he'll hold his head and claim a headache.

    Having read about PDA, my son shows some, but not all the traits, but I don't know how this would sit along side SM? The thing that relates the 2 conditions is obviously anxiety, but SM means the person physically can't speak even though they want to, but I presume Mutism within PDA means the person is refusing to speak in a specific situation.
    Does anyone have any experience of anything similar? I have a meeting with the Educational Psychologist at school on a Friday and not sure whether to mention this to them? At school behaviour is very good and he only speaks to his friends plus a few adults in school.



    Hi ,
    Welcome to the Forum,

    There are lots of conditions misdiagnosed . This link gives a wealth of information .

    https://www.pdasociety.org.uk/families

    Don’t forget the EDA questionnaire was compiled some years back and there has been a lot of extra research since . Basically some of the issues can be flexible . My two had speech issues , one talked too fast , the other had difficulty pronouncing certain sounds . One was violent on occasions , the other wasn’t .

    The main thing you are looking for is the extreme Demand Avoidance , the lengths they go to to avoid , don’t forget the role play , they are the parent / teacher or whatever role they choose to play .

    How PDA affected my two was different . One was full on from the start , the other was quite subtle like hiding car keys then boom in the teenage years .

    PDA is a very complex condition , there are normally extra issues to add such as Dyslexia , Dyspraxia , EDS , SPD ,Hypermobility the list is quite long . It’s like a jigsaw puzzle putting the pieces together .

    http://www.autismwithlove.co.uk/2016/12/when-i-realised-why-my-child-has.html

    Masking in school is common . PDA children are excellent at this . Mum normally gets the back lash and most things are her fault .

    https://www.pdasociety.org.uk/forum#/discussion/6057/useful-autism-sleep-advice-and-charities-

    Sleep issues are common in ASD .

    I would definatly compile your evidence , keep a diary , ask the school to do the same , explain your concerns and ask would they help gather evidence too.

    If both yourself and the school tried PDA Stratagies , see if there is any improvement . Watch the Webinars , they are the easiest way to learn about PDA .

    https://www.pdasociety.org.uk/education

    Don’t forget everything in life is a Demand , eating , sleeping , personal hygiene , yes talking too !
    Pat xx
  • dirtmother
    Posts: 877
    The key phrase to remember is "Can't help won't"

    There's not always the language catch up described and we're not always good at giving time for processing and responding... we may put everything right back to square one by adding further input. Easier said than done to zip it though!

    Some people's demand avoidance is extremely 'skilled' and subtle rather than overt, and of course you've been trying to get on with life, so it isn't the first thing you'd notice, you may already have adjusted brilliantly without realising.

    Learning a whole new language is often needed - in our house "Time to go" is "Are you OK to get your shoes on?" (and that's us in a really good phase and with a young man) Advance 'warnings' and a lot of the stuff suggested for ASD generally makes things twice as bad for us.

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