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Support Groups - they can help...
  • RhanHRhanH
    Posts: 1,138
    The other week I welcomed my 100th family into our support group! It felt like a triple edged sword; a real achievement that the group is established but quite alarming that so many need support and, frustrating that the extent of PDA is not yet recognised by many professionals.

    Significantly I’d say that over half of our group have a diagnosis which highlights PDA, whether this is stated clearly or explained as a profile or traits. Many have sought a private diagnosis but, a few of us do have a diagnosis via our local NHS Community Paediatric Team.

    However diagnosis is not a requirement to join the group. We also warmly welcome any families who are exploring the possibility of PDA and/or who have an ASD diagnosis but are struggling with demand avoidance and/or anxiety. There are few groups around our area that can help families and so if we can offer a little advice and reassurance I’m happy to do so. The group also now spans about four counties but I’m proud to say that new groups are developing from my initial set-up, that I’m delighted to support and promote. I hope we’ll be able to organise some joint events in the future too!

    As a group we try to meet every six weeks for coffee and then every other month in the evening for a meal, which is very popular with the dad’s! We regularly invite speakers to share about their services, arrange family activities and also organise training for families when needed. It’s an active group that shares ideas together and tries to make life easier for each other.

    So, if you’ve not yet tried to find a support group, I would really encourage you to do so. In the right group, the friendship and understanding of what it’s like to live with PDA can be life-changing; it’s certainly kept me afloat and made me strong again!

    For more information on support groups near you or, for ideas on how to start your own please take a look at the links here:

  • Holly59
    Posts: 2,586
    Wow , that’s absolutely amazing. I think the last time you were up to 70.

    I agree it is sad to think how many of us are unable to get a formal diagnosis . Fortunatly in Scotland a formal diagnosis is not required but PDA cases are so complex with co Morbid issues we really do need an accurate diagnosis .

    I only wish more people would set up support groups . Even a small group of eg ten parents in an area would make a huge difference to those parents . Just having a listening ear and someone who really understands is so comforting .

    Another group making the press . These support groups are a “ Lifeline “.

    Pat xx
  • RhanHRhanH
    Posts: 1,138
    Thanks Pat.

    West Berkshire is one of the groups where the parent who set it up started at our group. It’s doing really well and they’re also supporting another new venture in Reading! :-)

  • Holly59
    Posts: 2,586
    I have been chatting to an Edinburgh Mum at the start of her PDA journey but she an excellent understanding of PDA. She would dearly like to meet up with other Parents / Carers in a similar position for a coffee and a chat .

    If anyone is interested we would love to hear from you .

    Thank you.

    Pat xx

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