October PDSG – Guest Feedback


Following our
October Post-Diagnostic Support Group meeting in Crewe, I received an email from Helen who had attended.
 
As requested, I shared it with All at “Team Axia” and the response was so pleasing from them (I know Dream was particularly appreciative of Helen’s comments) that Dr. Buchan wished to share the feedback with a wider audience.

Re PDSG October meeting

Dear Carly,
 
You were missed on Wednesday, I just wanted you to know 🙂
 
I wondered if you could pass on this feed back re various things to Dr Linda please?

Dear Dr Linda and All Axia Team,
 
Very many thanks for another great PDSG meeting, and extra thanks to Calvin for his presentation on his research re  Autism “cures” which was very shocking indeed.
 
On the subject of whether we find it beneficial to see our diagnosing clinician at the PDSG, I would like to say a  huge “YES – DEFINITELY”.
 
From the first moment I met Dr Linda (who diagnosed my Aspergers in Feb 2016, and my son’s before that in September 2015), I felt safe in her presence.
 
This is a rare feeling, and so to have that continued link via the PDSG. Is of great value to me.
 
I would like to add, that as I get to know the team (Carly, Dream,Calvin, Gail, Scott, Elspeth- and PLEASE forgive me if I have missed someone out here) I also value them as they add to the very real benefits of the group.
 
On this note, wouldn’t it be great if we could adopt Dr Luke Beardon?
 
Post diagnosis I continue to live my life mainly as a fish out of water,  but for those two hours every month or so, I am very much a fish IN water.
 
How can something so intangible feel so right! When people talk they make sense, and if I manage to speak, I am understood.
 
Leaving the meeting, at the end of the session I find hard, because I am going back to an unsafe world, a very anxious fish out of water again.
 
Finally Dr Linda asked if any of us might be interested in helping at some level, regarding more localised help/support/meetings. And I would like to be considered as being potentially interested if I were able to help somehow, in my local area.
 
Kindest regards
Helen Jones
Guest Contributor

I did actually email Dr Beardon, and he responded…
I have recently been asked whether I am available to be up for adoption by Axia-ASD. Naturally, I accepted the honour with alacrity, delight, and excitement. I am elated to be a part of the amazing family that is Axia, and the extended family that comes with it by association.
Luke Beardon
Guest Adoptee

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6 comments on “October PDSG – Guest Feedback
  1. Dream says:

    Hi Helen,

    Firstly, apologies for not “Saying Hi” at the meeting, I did see you a couple of times but couldn’t catch your eye.

    I would like to echo your sentiments of the benefit and value of having our “diagnosing clinician” present at Axia’s PDSG’s. Perhaps what you describe as “feeling safe” I think of as “Trust”. I too felt from day one that I could implicitly “trust” both Linda and Carly, which for me is a rarity.

    For the first year following my diagnosis, I was attending the group sessions purely as a “recently diagnosed autistic adult”. In the last two years my “role” has evolved to include being a part of “Team Axia” (for which I feel truly blessed), however I feel I am also STILL attending the Post-Diagnostic Support Groups as an “autistic adult with a late diagnosis” (despite now knowing I am also seen as part of Axia, so “wearing two different hats” gets a little confusing for me at times!).

    Perhaps to say it another way; I can talk to you, Ronnie, Linda or Luke as “like minded equals” at a PDSG, but it feels important to me that “Dr. Buchan” is equally present (if that makes sense?). I think it is as Linda has said, the PDSG really IS a “co-production”, and for me there must be a trust-worthy director (to use a theatrical analogy).

    I thought your idea of adopting Dr. Luke was absolutely amazing, and it appears from his reply that he is more than happy to take on the role! *chuckle*

    There is no doubt in my mind that Axia’s Post-Diagnostic Support Groups are actually something quite special, unique even, serving multiple purposes to many people consistently. I do wonder what variables one would need to measure in order to try and reproduce what we have together achieved – and I do mean “together” to be those diagnosed who attend + Axia who organise. Without attendees voicing their needs from the group it couldn’t have evolved into that which it has become – a real Co-Production. It seems to me there is a dynamic feedback loop, and if that is replicated, then other groups may be successful, but they will never be the same!!!

    Thanks again for sharing this Helen, I’ll try and make sure I at least “give you a wave” at the next meeting! *chuckle*

    Safe journeys,
    Dream

    • Helen Jones says:

      Hello Dream! It was really lovely to read your reply. You’re very eloquent and absolute ly get it spot on everytime.I’m going to read it several more times.
      Your wish for safe journeys was very on point as I am currently on the trans pennine train to visit my brother – for this read ” fish out of water attempts flight to the moon”!
      I too am sorry I didn’t say Hi but next time, yes or at least a wave across a busy room 🙂
      Thanks Dream, you made me really smile.
      Take care and Kindest regards.

  2. Luke says:

    Both of you have now made me smile! As an honorary adoptee I am absolutely thrilled to be a part of the family; like all families there cannot really be any comparison or replication – but I would like to note that from my perspective Linda as the (dare I…do I say it…sorry in advance Linda…) matriarch with her immediate family in supporting roles, it would be something astonishing for others to come even close to what you (we!) all have and can experience. Long may it last!

    Annoying baby brother
    Sage father
    Insufferable know-it-all older brother

    [Delete as applicable or insert one’s own moniker]. Love to all x

  3. Carly Bailey says:

    I absolutely love this post and feel so honoured, privileged and grateful to be a part of this truly unique experience! I am in absolute awe that I get to witness the interactions and experience of everybody involved with Axia ASD Ltd on a daily basis and have true job satisfaction every single day. It’s more than a job to me it is a true experience and one I absolutely love being a part of.

  4. Linda Buchan says:

    I am struggling to write anything that adds to the previous brilliant posts
    I feel honoured too to be in such illustrious company
    I will simply say
    Thank you
    Linda

  5. Luke Beardon says:

    In such illustrious company in such an illustrious company – te he!

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