Post-Diagnostic Support Group Minutes – December 2016

Meeting-minutes-pictureMinutes of the Seventeenth
Post-Diagnostic Support Group
7th December 2016

Today’s group was attended by 38 people.

Main Topic

A presentation from Dr Sudharsan who carried out a question and answer session on People on the Autism Spectrum, co-occuring mental health conditions and also medication and the impact of medication’.

Dr Sudharsan spoke and opened floor for discussion

Linda asked about whether he had noticed that often people with Autism had paradoxical effects (opposite effects to what might be expected from some medications) and also on occasion, minor doses having a big impact and other medications having a very small impact.

Dr Sudharsan quite rightly pointed out that there is no medication available purely for autism, however, people may has associated depression and he spoke about various anti-depressants including those that impact on Serotonin and those that impact on Noradrenaline production. He also spoke about when anti-psychotics can be useful and also the impact of ADHD medication

Dream spoke about Serotonin based medication which made him quite ill causing nausea. When ‘Conerta XL’ was prescribed for his ADHD, this was much more effective for him. Dr Sudharsan spoke about the fact that Serotonin is not only produced in the Brain, but also produced in the stomach and this might account for some of the side effects. He pointed out that Serotonin based medications impact on everyone, causing nausea, but that usually clears up after a few days.

A question was asked about medication for Post Traumatic Stress Disorder.

Dr Sudharsan spoke about needing to weigh up the positives from the medication versus the side effects, such as weight gain, personality change, drowsiness.

Dr Surharsan spoke about the fact that it is really important that there is regular follow-up and if medication isn’t working, it needs to have regular reviews.

Dr Sudharsan then went on to talk about the fact that we need more funding and training across society to raise awareness of autism, that he felt it was not good that there was no coherent service in the NHS for Autism after diagnosis.

A question was asked about how it might be difficult for Dr Sudharsan to notice people with Autism in adult life where they had got very used to masking their symptoms, particular women who may be very adept at masking their difficulties. At this point, Dr Sudharsan spoke about the vital importance of gaining a clinical history and also noticing where things might not follow the usual pattern, for example, people with very black and white thinking and people with difficulties with change, inflexibility.

Dr Sudharsan did recommend that people do their own research on the internet and to present their thoughts to the GP. Further discussion about medication occurred, about the importance of Beta blockers potentially for anxiety in certain situations.

A question was asked, can you have anxiety without depression, one client was told that you couldn’t. Dr Sudharsan cleared up this misnomer.

A question was then asked about Dissociative Disorder and PTSD and a discussion occurred about the potential importance for Pregabalin. Somebody asked, is it appropriate for a client to actually ask the Doctor for a particular medication, Dr Sudharsan replied, yes. Dr Sudharsan was quite clear:
“don’t suffer in silence, your health is most important, change your Doctor if they don’t listen”

Break

We then had a break. Where 2 cakes were provided by Calvin. One was a Gluten free fruit cake and the other was a Deliciously Moist Cake from the game Portal, this is the cake of the month.

The feedback from the group was that Dr Sudharsan was extremely informative.

We discussed about the previous group where we discussed rules about the group including being respectful to each other and also about confidentiality. Linda bought up, what about if you see somebody outside of the group or indeed a member of Axia, would you want to be acknowledged or not. Linda explained her position, that if she saw somebody and they were with someone she didn’t know, she would not make the first acknowledgement, but would wait to see whether the individual would want to be acknowledged. Different members of the group, understandably had very different ideas about whether they would want to be acknowledged or not, some did, some didn’t. This also led on to the fact that, common in people on the Autism Spectrum is that they often don’t recognize people by their faces. There is a phenomenon called Prosopagnosia which basically means that facial recognition is not something that is easy for the person to do, so it could be that the person isn’t ignoring you, but actually doesn’t recognize you.


Addendum by Dream. Ronnie reminded us that it was around this point he raised the very pertinent fact that, in his words, he had recognised

“Failure to realise Calvin was at the meeting for about 30 minutes until Linda started speaking to Calvin which I was Honest enough to admit and thought it was very funny and was a significant Factual Funny Contribution to the Facial Recognition Subject. I think the group was laughing like me seeing the Funny Side and very relevant to the Facial Recognition Subject.”
Personally I too recognised what Ronnie was describing, I had noticed “something wasn’t as usual” when chatting with Cal prior to the meeting, I just hadn’t realised Calvin looked different purely due to the lack of his hat!


Autism Alert Cards

Autism alert cards were again offered to the group.

Books

A number or books were recommended by the group, including, Panicosaurus By Kay Al-Ghani which was recommended by client and also Something different about dad by John Swogger and Kirsti Evans. 

Helen had read Pretending To Be Normal by Liane Holliday and had given a review on the website, she described it as good and helpful with a lasting effect on her. We then discussed Steve Silberman’s book Neurotribes which is an excellent book but is quite lengthy, one of the group members pointed out that there are some very good YouTube videos of Steven Silberman talking about the content of his book. There was another book about young people with intellectual disabilities and autism hit puberty’.

Linda also shared something a young child had said to her recently who was going through the diagnostic process
“Why do we have to put a label on people who think differently”
which was a very astute point.

Gift Ideas for Xmas

Calvin then did a presentation on gift ideas.

  • DVDs: Long way north. When Marnie was there.
  • Comics: Scott Snyder Batman series
  • Anime:  Sword Art on Line.  Your lie in April. Fate stay night
  • Manga:   My hero Academia.   Food wars
  • Games: Superfight (card game)

His Ultimate recommendation was a subscription to Loot Crates (anime and gaming) and/or a Crunchyroll account and/or a Funamation Account as gifts

Final

Finally there wasn’t time to discuss it, but we decided, following on from what Dr Sudharsan had said about raising awareness and our previous discussions about celebrating Autism Pride that we could combine an Autism awareness and a celebration of Autism Pride. It was decided to give over the whole of the next group to planning for Autism Pride to include Autism awareness.

The next group will be on:
Wednesday 18 January 2017 between 12pm-2pm at Crewe Lifestyle Centre.


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28 comments on “Post-Diagnostic Support Group Minutes – December 2016
  1. ronnie says:

    Thank you for including my Facial recognition contribution Carly and Dream also Thank you Dream for your supportive words.
    Enjoyable meeting and interesting presentation by Dr Sudharsan.
    I forgot to mention at the meeting if the Group is interested in a 2018 Conference taking place, I am still happy to give a talk on my life experience with Aspergers Syndrome. But if Group wants a 2018 Conference to take Place ideas are needed from other members of the Group Please.Linda agreed a few months ago it could be discussed in January, but as I said before I forgot to mention it at the last meeting.The group did have an enjoyable day Conference in 2015. But if the Group does not want a Conference in 2018 that’s fine.But if the Group does my offer to give a Talk Stands. Thank you.

    • Dream says:

      Hi Ronnie,

      No, Thank YOU for reminding us of this moment in the meeting. I personally feel it is a very valuable point, probably because I experience the same sort of thing much of the time without even noticing! When you brought it up at the meeting I suddenly realised that I’d experienced the same sort of thing nattering with Calvin earlier, only my brain hadn’t put together the fact that it was simply because he wasn’t wearing his hat that “something is different”!

      I thought the other important part of your “revelation” was that you were able to recognise the humour of the situation when “honestly sharing”. I remember chuckling to myself as I realised the same thing had happened to me, but I didn’t work it out!

      Again, this is my personal perspective, but I feel that being able to see our own “weaknesses”, and then laugh at our Selves when we recognise them, is EXTREMELY important for “us”! Maybe I mean “me”, but I think that recognising where my “disabilities lie” and NOT chastising myself for being such an idiot, and laughing instead (without some sort of “judgement” comparison to others) makes it easier to “let go of” the flaws and focus on where my “abilities” can be of benefit.

      I also loved the 2015 Axia Conference, despite it not “flowing in the direction I expected”. I would love a 2018 conference too. For my Self, I need to be able to “see a point”, so I think if we are to “make a conference happen”, we need to “do something different”, find an angle which is unique and serves a purpose which others are not seeing or doing…

      Nope, no idea what that might be I’m afraid Ronnie, but I hope you know what I mean? I’m sure a talk on your life experience could be extremely valuable to many people, maybe even assist or aid them in some way, so please don’t think I’m being dismissive of your offer to speak at all – not that I have any say in anything man, I’m just along for the ride! 🙂

      It appears to me there are plenty of “issues” around Autism being covered by NAS, the media, politics etc., however my FEELING is that we’re on some sort of “cutting edge” here… I feel blessed to have been diagnosed, and privileged to have crossed paths with the Likes of Luke Beardon, and supremely grateful to Linda and All at Axia for creating the P-D.S.G. gatherings (which in honesty, falls into the “going above and beyond” category in my book!).

      Hope you have an enjoyable Christmas man, won’t be long before I’m putting on my “Bah Humbug” sweater me thinks! *chuckle*
      All the best Ronnie, see you in 2017!!!
      Best wishes,
      Dream

  2. ronnie says:

    Hi Dream,
    Yes I found it really funny that I didn’t realise Calvin was at the meeting and i’ve never mentioned it before, but I was puzzled why Linda wasn’t mentioning Calvins absense.
    I think my offer to talk about my Life experience of Asperger Syndrome is a Major Point for the meeting and to be honest while hopefully many people with Aspergers Syndrome would be at the Conference, my Talk would be aimed at professionals hopefully to give them an understanding of the Problem we face with Aspergers Syndrome which you and I and the rest of the Group already understand.
    If the group could come up with other ideas to Complement the Major Point. (My Talk ). Then that could make for a Successful Conference. And I think it’s important that plenty of People with Aspergers Syndrome are at the Conference rather than just Experts with perhaps 1 or 2 people with Aspergers Syndrome to be paraded in front of the Experts so they only have to Cope with 1 or 2 Asperger People, rather than there being many People with Aspergers Syndrome at the Conference. That was one of the Good things about the 2015 Conference the were a lot of us with Aspergers Syndrome at the Conference as well as many Experts. That is another reason for the 2018 Conference to take place. I’ve provided 2 reasons. By the way a few month ago Helen was supportive of my idea to give a Talk on my Life Experience with Aspergers Syndrome and I did Thank Helen.( It was on one of the Monthly Meeting Minutes. )
    I will be glad when Christmas is over, no longer enjoy Christmas. Best wishes Ronnie.

    • Dream says:

      Hey Ronnie,

      I think I know what you mean, i.e. a “talk aimed at professionals” to hopefully inform them of the problems you’ve experienced. My personal experiences in dealings with the NHS regarding diagnosis have been mostly positive in comparison to some stories I’ve heard since, however my problems perhaps lie more with “the public & people” and the need to “educate” or “inform” them maybe…

      I don’t know, I think it’s all very confusing to me. I will never forget the very first “meeting” I think we both must have attended where I heard the “Joke” – “ When you’ve met one person with Autism you’ve met one person with Autism !!! ” I found that deeply profound, and I sort of think some of what Dr. Beardon says kind of reinforces that idea, we are maybe “more unique than most”?

      Have you thought about maybe writing a book Ronnie? I say that because I agree with you about your story being important. I’ve often heard it said that “we all have one good book in us, our own story”, and I’ve been encouraged to write a book myself recently (which I am now attempting to do). I realised the book I WANTED to write I would not and could not ever write! I have absolutely no interest in writing an autobiography though, however I’m now approaching it from a different angle, embracing my “autistic perspective” and attempting to write the book from that point of view.

      I do vaguely remember Helen speaking as you say about supporting your talk, and if you tell me “It’s in the minutes”, I have total faith in your word being accurate on that score mate! Maybe you could talk to Carly or Linda about perhaps performing a presentation of your “talk aimed at professionals” at a P-D.S.G. sometime? Perhaps something to discuss in January at the meeting.

      Anywayz, I no longer “enjoy Christmas” either, however in the last few years haven’t found it quite as distressing as in previous decades! So even if not “enjoyable” Ronnie, I at the very least wish you a “Peaceful Period over Christmas!” 🙂

      Best wishes,
      Dream

  3. ronnie says:

    Hi Dream,
    I’m not writing a book, I’m not a natural writer and don’t enjoy writing.
    As I’ve said I will mention the talk idea,but it’s up to the group if they want a conference or not and have said it’s fine if they don’t want a Conference as I have said if the group would like a Conference then ideas are needed as well as mine.
    The Talk in front of Professionals would be better than a Book which is frankly to much for me and as I’ve said believe it or not I don’t like writing.
    I think it is in the September minutes about Helens support, but the Tablet I use is not very good for finding the way round the site, but I’m pretty certain it’s in the September minutes, which I’m sure with you having set up the site you would easily find.
    Best wishes
    Ronnie.

  4. ronnie says:

    I’m right Dream. Helen’s support for my Talk is in the September, minutes.
    I just discovered the older posts Button at the bottom of the Page which I clicked until I saw the September minutes.
    Best Wishes.
    Ronnie.

    • Dream says:

      Hi Ronnie,
      As I said in my previous comment, “I have total faith in your word being accurate on that score”, so I was right too! *chuckle*
      Safe journeys,
      Dream

      • Helen says:

        Hi Ronnie and Hi Dream
        I’ve read your conversation with interest and warmth.
        I too would like a 2018 conference to take place. I was saddened that the 2017 one was shelved. I would very much like to hear Ronnie’s experiences of living with Aspergers syndrome and admire you Ronnie for having the drive and strength to give such a talk.
        I always benefit from hearing members of the group talk about their experiences, we all have such varied pasts but all are united by the bond that is Aspergers.
        I am still, I feel, a newcomer to all this and am not sure what I could suggest that would be relevant to include in a conference.

        Dr Luke Beardon would be high on my list to include. He would benefit everyone in attendance, whether they have ASD or are NT and open to learning about us.
        On that note, it would be wonderful if, in the future, recognition is shown to the neuro diverse on a daily accepted basis, by providing quiet places to ‘be’ such as railway stations!!!
        The noise, the wrappers, the eating, the phones, everything. Then you get on the train – if you are lucky enough to have found the right p!atform – and it’s all there again. Except this time you are trapped in close proximity to the torture of someone eating crisps.
        The noise and the smell…………… real torture.

        So perhaps at the conference there could be videos shown to illustrate to NTs the sensory overload that we experience many times a day, and how exhausting it is. Especially from an adult’s perspective, as well as a child’s.

        I’m going to keep thinking about the conference and possibly content.
        Kindest regards to you both
        Helen

        • Dream says:

          Hi Helen,

          Lovely to “hear from you”, or should I say “read your comment” (and we waved at the last P-D.S.G meeting too! *chuckle*).

          Firstly I must mention your description of difficulties faced on “public” transport such as trains most profound. The “torture” which you describe, and I have experienced, are too much for me to cope with. Driving is difficult enough for me, but at least I can travel in silence with only my thoughts (and an awareness of the chaos around me I’m trying to process and deal with in order to avoid hitting the idiot who cut in front of me with out indicating this evening!!!), so I still have “independence”, but I am doubtful I could adapt to another mode of transport where my senses are being overloaded with painful, redundant data as in your vivid rendition.

          Regards the conference, I too would like another, perhaps because the last one I found so profound, despite it not heading in the “intended direction” exactly as planned. I appreciate Ronnie’s sentiment of wishing to speak to a group of “Professionals” in order to inform and enlighten them. Sadly in his recent guest submission post he expressed a disinterest in speaking at a P.D.S.G. though, however perhaps your words will demonstrate that it is not only “professionals” who may benefit in hearing the experiences of those of us with a “diagnosis” (ASD, ASC, Autism, Aspergers, whatever label one chooses for themselves).

          Amazing as I found Axia’s “Perspectives from the Spectrum” conference to be, I understand if Ronnie may feel frustrated that the planned “platform” for a number of us to be questioned by the audience didn’t occur. At the time the totality of questions received were directed towards the “Speakers” from those “On the Spectrum” (who appear more willing to learn in some respects?) rather than “Professionals” wishing to learn about “our” experiences, so it evolved unexpectedly in a different direction. Perhaps part of the “problem” with a conference is that one is probably “preaching to the choir” (if that makes sense?). Those who attend are least likely to be those who need to learn, but are those who benefit most from a positive experience… perhaps, maybe, I have no idea what goes on in other peoples heads, I’m just guessing!

          As for the Good Doc Luke… Helen, Shhhhhh… YOU managed to get Axia to adopt a “god”, we can’t tell anyone!!! *chuckle* Seriously though, he is an amazingly insightful and inspirational gentleman, able to inform, educate and entertain both the neuro-diverse and the neuro-typical equally. Perhaps it would be my “Christmas Wish” that the P.D.S.G. get to see “Axia’s Guest Adoptee” in 2017, as a 2018 Conference feels like a lifetime away! That said, I can’t imagine the planning, organising and cost it takes to create such an event… but I’d still like to see one happen…

          Your “fish out of water” phrase keeps coming back into my head funnily enough, most recently when thinking about being “Self Aware” compared to “Self Absorbed”. The word “Autism” is etymologically linked to an “action or state of self”, and recently it came into my head that the “fish out of water” is “self aware”, whilst the “fish in water” is like the “Self Absorbed”, if the water is a fish bowl then one only sees their own reflection… Sorry, just sharing my musings, meaningless as they may be!…

          I hope life is treating you kindly Helen, and that you find some “peace” within the “Holy-days” to come 🙂
          Best wishes and safe journeys,
          Dream

  5. Ronnie says:

    Hi Helen. Thank you so much Helen for your enthusiastic support for a 2018 Conference and your very kind words to me in support of my Talk.
    Your idea for a Video Presentation on Sensory Overload is a Fantastic idea, Thank you very much for the Video idea and your very kind Encouragement to me. Best Wishes.
    Hi Dream, I am not going to give a Talk at the Group meeting at Crewe Lifestyle Centre on my life with Aspergers Syndrome. It is only going to happen at a 2018 Conference in front of the Group and Profesionals or not at all if the group decides against a Conference. I WAS NO MORE DISSAPOINTED THAN THE NEXT PERSON AT NO QUESTIONS ASKED IN 2015. Will not be writing a Book which i am not up to and my Book would be boring. Best wishes.

    • Dream says:

      Dear Ronnie,

      Sincere apologies if I have written something which you have taken offence with, it was not my intent, I am only trying to help here!!!

      Also HUGE apologies if I have misinterpreted your comment as having any tinge of “hostility” ( this is why I don’t do “text messages” for a similar reason, all too often I find I can’t say what I mean in less than 160 characters, or interpret others with so few words. Plus I have witnessed an incredible number of arguments start in the Neuro-Typical population due to misinterpreting a text message received on their phone! )

      I’ve re-read my comment, and can’t see where you think I implied you were any more or less “disappointed than the next person” that no questions were asked of those of us invited to answer questions. Personally my recollection is more of confusion than disappointment when the itinerary changed, but what I said was, I could understand your “frustration” (not the same thing as disappointment from my perspective).

      I almost feel I want to apologise for suggesting “writing a book” to you Ronnie, or suggesting you “share your story” with those of us “On the Spectrum” who are actually interested in hearing others experiences (as Helen stated) at a PDSG, but is it right I apologise for trying to help???

      I think you know I have a lot of respect for you sir, you have gifts I lack, and our lives have no doubt been totally different, and if you do not want to write a book or talk at a P-D.S.G., then that’s fine, it’s your decision, I wasn’t trying to put any pressure on you or anything, I was just thinking of “practicalities”…

      How would one get people who NEED to be “educated” and “informed” to a “conference” they have no interest in attending?!? In my experience, the people who NEED to be “illuminated & enlightened” include politicians, the police, and County Councillors (amongst no doubt many others), but in “reality”, I am in doubt one could “force or make” ANY of them attend.

      I think discussion of a potential conference is scheduled for the January P-D.S.G., so everything can be aired there.

      I hope “we’re good” here man? I was only thinking of “alternative outlets” for you, my intent was to “encourage not undermine” in any way mate, so I sincerely hope you feel no animosity or ill will towards me Ronnie!

      Best wishes and safe journeys,
      Dream

      • ronnie says:

        Hi Dream,
        It’s OK I was surprised you mentioned about my Frustration at no questions in 2015. It did come across to me as though it was just me.Let’s just say it was a misunderstanding.To be honest at the time it was a relief to be able to return to the audience.
        When I mean Proffesionals I mean Professionals in the Autism Field. I admit I my self am not ready for giving a talk to Mp’s Councilors or Police, because frankly I think the Autism Professionals who my talk is aimed at
        have still a lot to lean about People living with autism.And the group would be there so would still hear my talk.
        I’m so grate to Helen for her support and to Mark on the Guest Content for his Support.
        No hard feelings.
        Best wishes
        Ronnie.

  6. Helen says:

    Hello Ronnie,
    It was lovely to read your reply, thank you very much for being so positive.
    I’ll send a separate reply to Dream.
    This time of year is so demanding on our resources, emotionally, mentally and physically, I hope all goes well for you.
    Best wishes
    Helen

    • ronnie says:

      Your so welcome Helen and Thank you so much again for your fantastic support which means so much to me.
      Hope all goes well for you.
      Best wishes
      Ronnie

  7. Helen says:

    Hi Dream,
    I have taken a while to reply to your very thought provoking reply to my post – I’m seeing things from another angle and it’s quite enlightening thank you!
    On the fish out of water/ in water/ reflections in the bowl – very clear, I like it. I am thinking that actually, it’s ok to be out of water, all positive in fact. So many thanks for that.
    And the conference situation, such a new thing to me; I may have said previously that I have no experience of such a thing – and what you say about the people who may be in attendance at such an event, having an interest in ASD already. Well that made complete sense, and preaching to the choir may not be totally beneficial.
    Perhaps the Autism Pride is an event closer in time, that may be a way of reaching out to society in general.
    Again, I have no experience of this so I may be barking up the wrong tree.
    Thank you Dream, for all your input. I was very pleased that my train travel/sensory issues interested you. It was good to talk about it!
    I’m looking forward to the January PDSG meeting.
    There are one or two hurdles to be cleared before then. But I count my blessings.
    Very Kindest Regards,
    Take care of you and Thank you again.

    • Dream says:

      Hi Helen,

      many thanks for your “considered” response, it is MUCH appreciated! 🙂

      I would guess that you have experienced a “single sentence” remaining in one’s mind following a conversation? So I should be thanking you for supplying me with “mind fuel”. I was merely musing about my own experiences and that I was perhaps “most conscious” when “most uncomfortable”, which indeed gave me an awareness which one could think of as “positive” (at the very least I became more aware of that thing I think of as my “Self” in comparison to those whom I perceived as “Normal” in those days).

      I am actually extremely grateful to now know WHY I think so differently, and that although it MAY be seen as a “curse”, it MAY also be seen as a “gift”. I have strange thoughts, such as “An anchor is seen as a good thing, which is true if one is trying to avoid being thrown into rocks midst a storm, however not true if one is trying to cross a desert alone and has to carry said anchor upon one’s back!”

      I do not know why these thoughts flow through my head half the time, sometimes I share them, sometimes I don’t, but at least I now feel, at times, under certain circumstances, they are totally acceptable and have some value.

      Regards the conference, did you not attend last year? I suppose I had assumed with your mention of Dr. Beardon it was in reference to the conference, however realise it may have been from his visitation in May at the PDSG, so apologies for “making an assumption”. I’d merely said I had a pretty good video camera, next thing I knew I was filming the event! *chuckle* That’s actually a “half truth” Helen for comedic effect! It was an absolutely amazing event, but I WAS in a constant state of feeling “outside the fishbowl”, neither part of the “audience” nor part of those “on stage”. The whole original idea of the conference (in my head) “Perspectives from the Spectrum” was to present Axia’s findings from data analysis which was new and unique, have Luke as a guest speaker, and in the afternoon have a “panel” of those of us diagnosed who would be prepared to answer questions which the audience had written over the lunch break.

      As I mentioned to Ronnie, my recollection is more of confusion, as I was offering to help set the chairs up and suddenly “uncertainty” appeared. I think most questions may have been for Luke (whom I believe may have already left by that point), I really don’t know exactly, and I never felt inclined to ask (which some may consider odd, but it didn’t feel like my concern)… I’m finding that whole “Prayer of Serenity” contains quite a pleasant “acceptance” which I’d maybe not given enough credit to in the past…

      Sorry Helen, see what I mean by “sharing my musings”? When my thoughts start rambling I just type what comes to mind, when perhaps I should “edit” them first!

      Looking forward to the January PDSG too, I hope your “hurdles” before then don’t prove too troublesome.

      Kindest thoughts and best wishes,
      Dream

  8. Helen says:

    Hi Dream,
    I have just written a reply to you, pressed post, and lost it!!!!,
    I am so frazzled by this technology right now.
    I have to go and jump another hurdle this evening, but I’ll be back!
    Kind regards

    • Dream says:

      Hi Helen,

      I’m very sorry to hear your comment “vanished”, but please do not stress on my behalf, I totally understand as this has been happening to me since the 1990’s on occasion!

      Personally, I have learnt a safer approach, open a text application (TextEdit on my Mac, or WordPad on Mum’s laptop), write my response in that and then copy and paste it into the web-browser or email. That way, when weirdness happens, I haven’t lost all I’ve typed and can try again.

      It’s not perfect, but has “protected” me from the “glitches” I encounter on a relatively regular basis on this “Inter-weby-net-thing”!

      I don’t envy you whatever hurdle you’re facing, but wish you all the best. A friend once told me “it’s not one step at a time, it’s one breath at a time”, and perhaps the best advice I ever received was “keep breathing”!!! It sounds obvious I know, but it made me realise how often I found I was actually “holding my breath” without even realising (I still do!). One of the advantages of simply having my “Axia Autism Alert Card” is that it acts as a reminder for me that if necessary, I can always say “You need to read this” giving me time to breathe and process.

      I still find myself having to remind my Self, that it is okay to be me, it is okay to NEED extra time to process information, and it is okay to tell people “I’m sorry, I have to go” and apologise later.

      I am still thinking about your “idealistic” comment of “it would be wonderful if, in the future, recognition is shown to the neuro diverse on a daily accepted basis”. I feel that IS absolutely how it should be, and am wondering how such recognition could be achieved… it appears extremely complex to me, however I have hope, and think we may at least be “heading in the right direction”… maybe!

      Best wishes (and if this vanishes I can investigate!),
      Dream

      • Helen says:

        Hello Dream,
        Thank you very much for the great tip about the “copy and paste ” back up system. I’ll be using that from now on.
        I have to say that I always enjoy hearing you speak at the PDSG, and reading your “musings” here.
        You are very eloquent and your words always resonate with me.
        This time in particular you have helped me to see things “outside the box” that I hadn’t dreamt of before.
        I am still learning, I doubt I will ever stop.

        I am quite recently diagnosed – February this year, and that’s why I didn’t go to the 2015 conference.
        It came as a wonderful relief to be honest, after 60 years of feeling ” not right” at the very least. It’s been a traumatic “journey” but I made it, and I’m a better person for it.

        I count my blessings, and feel so fortunate to have landed in the Axia radar. I feel it to be unique and hugely special. And that’s down to the people involved and running it.
        You are right, it’s all very complex, but I like that you think we may be heading in the right direction.
        Kindest regards.

        • Dream says:

          Hi Helen,
          Sincere thanks for your kind words, means a lot to me 🙂
          Apologies for brevity, got a few “hurdles” of my own currently!
          Safe journeys and best wishes,
          Dream

          • Helen says:

            Hey Dream,
            There is nothing like a hurdle or three to cause brevity and sombreness. I fully understand.
            I hope you get through ok. Be kind to yourself.
            It’s a hard time of year I think, and I remember that you lost someone very close to you this year.
            Wishing only good things for you.
            Helen

          • Dream says:

            Hi Helen,

            Thank you for that, an apt reminder “Be kind to yourself” ! For many years I have found some comfort and solace in “Desiderata” which has a similar line “Be gentle with yourself”, although it is a line which follows I think of most oft “And whether or not it is clear to you, no doubt the universe is unfolding as it should”.

            I try my utmost not to even “recognise” Christmas half the time, let alone “celebrate” it, however helping my mother makes her happy, which reduces my stress (despite the “doing” to help her being a cause of raising my anxiety levels !!! )

            I’m also probably still angry with my father dying on 5th January 2001, so yes, Skipy’s passing earlier this year is making it harder. Particularly as her family have always known me as a grump this time of year, her kids giving me a black santa “bah humbug” hat one year and Skipy sewing the same onto a black sweater another year for me. A few years back she introduced me to the idea of the “12 Holy Nights Meditation” as opposed to the “Holy Days”. It was way too much of a rigmarole to actually DO, however I loved the concept and saw how it was based on my “birthday nemesis”, the “Mid Winter Solstice”. We’d been toasting the sun for some years, however actually looking at the period with a different “model” meant the last 3 Christmas periods have been some of the most pleasant and peaceful I’ve had in decades.

            Thank you for remembering my friend Helen, personally I probably wouldn’t have remembered such a detail from another’s life, and if I had I would probably feel awkward about mentioning it as I’m really not good dealing with all this emotional stuff. Perhaps that is why the universe is creating all this “doing” preventing me from “being”… I know ideally the two should be harmonious, and hopefully after this week I will be in the right environment to concentrate on what is currently “driving” me – I gotta get me a book wrote quick! *chuckle*

            A few winter solstices ago we filmed Skipy’s younger son shaving my head in a sham ritual for the “fake religion” of Discordianism. It’s sort of like a Taoist philosophy made humorous. I’m meeting up with him tomorrow, have a catch up, take my guitar and see if we can have a bit of a jam. Gonna be a different solstice tomorrow for sure, but hopefully beneficial to us both.

            Anywayz, apologies, I seem to have rambled on, I’m conscious of the time, and wondering if the comments section is the best place to be so “open”… as good a place as any I would guess, and I’m sure I’ll be informed to the contrary if I am wrong!

            Best wishes to thee and thine once again,
            Dream

          • Helen says:

            Hi Dream,
            Well I’m hoping that your jam session took place – with guitar and in other ways too. A blending of thoughts and minds, and if possible some small glimmer of peace.

            Your last post had me researching on the “interweb” 12 Holy Nights.
            I’m most taken with that, in its simplest form I must add, being a simple “ish” soul.

            Like you I had wondered if it is ok to converse and share on this site.
            But it’s all linked to the PDSG I feel, support for one another.
            It’s so nice to “speak ” and know someone is listening.
            And also, others may benefit from things said.
            You’ve certainly made me think outside the box and that’s good.
            I hope you have some peace of mind and that the coming times are not too stressful for you. Pick up your guitar…………I tried sooooooo hard to learn the guitar a couple of years ago. I even paid for lessons but
            I think I would have made a better job of learning Japanese!

            Stay safe Dream
            See you in afew weeks at the PDSG for another wave 🙂

          • Dream says:

            Hello again Helen,

            Than you for your thoughts, they are much appreciated, and I suppose make me realise how little I take in of “others lives”, it is indeed a failing in me, and looking back always has been.

            We did “jam” for about an hour before my ears couldn’t take any more! I was also conscious Skipy’s son was “putting effort in for my benefit”, which is nice, but not necessarily “organic”. Tough times though, “we do what we do to get through” as another good friend once told me.

            LoL, I too consider my Self a “simple soul” and am proud of it! If my recollection serves me correctly, Sir Isaac Newton gave a talk to the Royal Institute in which he said something akin to “There are 3 rules of science: Simplify, Simplify, Simplify”. I know not as to whether this be true, but I like the concept, it has a “Socratic Feel” to me!

            I really don’t know what one would find googling the 12 Holy Nights, but I would “exercise caution”, as this “arena” is Astrological in Nature. Unfortunately, the circle, cross, light, dark, wax, wain, horizontal, vertical, clockwise, counter-clockwise, thirds, quarters, nothing and 1 are made to appear confusing (as I have just demonstrated my Self ! ). Personally, I find some peace in patterns I can observe, and ALL is “cyclical” from my humble perspective. Time will tell whether this “model” I have has any “value” as it is currently “driving” my book!!!

            I too agree that it is okay to share here on Axia’s site, thinking of it as a “safe zone”. That said, experience has taught me to not express in public perhaps all that goes through my mind (even if I am demonstrably, empirically and emphatically proven right on a “forum”, I can still be told to “stop talking about this topic” by an Administrative Monitor). I know that it is Axia’s wish to have an interactive site, however they also know of the complexity and responsibility of operating a “forum”. There are many places offering this platform and method of interaction, but in my opinion, to “do it right” requires more resources than one would ever imagine… In fact wonderful as the National Autistic Society may be and for all the good they do, whoever told me I was NOT “in a contract” with NAS “posting in the forum”, should have been removed as a moderator, because they OBVIOUSLY had not read their own “Terms and Conditions” page on their website!!!

            Sorry Helen, mind swirly and just typing thoughts as they arise… it makes sense in my head, apologies if it makes not sense in reading!

            I do also thank you for commenting that I’d assisted you in seeing “outside the box” (what till you see “there is no box”! *chuckle*). I do like to think if I’ve assisted another in seeing a different perspective, I have performed my role, fulfilled my duty and been true to my Self. Incidentally (please note, not “coincidently” as it is actually “synchronistic”), only a few hours earlier did I comment to the good Dr Luke how I agreed he was right in the historical value of “The Fool”. It is an incredible “archetype” with many connotations. I consider my Self a “humble fool”, perhaps more foolish than humble! That’s one of those “half true / half jest” statements!

            I tell you what Helen, with your mention of attempting “learning guitar” and my experience earlier of having my guitar strings resonate with the drums despite my NOT playing guitar at the time but feeling them ringing, instead of “another wave”, let’s “make a point” and speak again at the next P-D.S.G.!… Ohhhh I feel so mad at times, this paragraph may be describing the “collapse of the wave function” if one reads between the lines! *chuckle*

            I truly wish you a peaceful and pleasant period over these holidays (whatever label one wishes to ascribe), and that any “stresses” are “tolerable”. I feel aware of a hideous irony, without “stress” we would not even exist, and at the same time, it is stress which kills us!!! Everything in moderation perhaps?

            Best wishes and kindest thoughts,
            Dream

          • Helen says:

            Hi Dream,
            I just had to message to thank you for your kind wishes and your very interesting ( as always) post.
            The time of year has caught up with me, and I’m doing my best to “Go placidly amongst the noise and haste…………..” but it’s swamping me at the moment.
            I do send my best wishes to you Dream – see you on the other side.

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