Guest Post: Starting a Support Group

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 locally that can help families and so if we can offer a little advice and reassurance I’m happy to do so. The group also spans about four counties which was never my original  intention but I’m proud to say that new groups are developing from my initial set-up, which 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 and information together and tries to make life easier for each other.  We don’t use social media just the e-mail, but it seems to work!

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!

One of the benefits I hadn’t foreseen is that not only have I made new friends but so have my children! Our daughter with PDA is learning to play, share and engage with others; she’s even beginning to show empathy towards her new friends!  Her sister on the other hand can relate to the difficulties other siblings experience and share ideas with them; she can see first-hand that there are other families like ours!

I’ve met lots of families over the last three years and can’t begin to describe what a privilege it’s been to listen to their stories and connect them with others.  A support group doesn’t have to be boring, it can be emotional but, it can also be lots of fun!

Want to find out if there is a PDA Support Group near you or, start your own? Then take a look at the information on the PDA Society web-site: click here

However if there aren’t any PDA groups nearby, please don’t give up, take a look under your Local Offer and see what else is available.  All groups will have their benefits you may just have to do a little PDA Awareness training first!

Take the plunge; seek out a group, share your journey, make friends but more importantly have fun too because you deserve it!