Post-Diagnostic Support Group Minutes – October 2016

Minutes of the Sixteenth
Post-Diagnostic Support Group
26th October 2016

Today’s group was attended by 36 people.

Items discussed were:

Linda introduced the group explaining the structure for the group. She passed on Carly’s and David Reiser’s apologies for not attending. Linda talked about how North Wales are trying to set up their own group and were attending to see how our group is run and that hopefully we will be having an open discussion regarding North Wales setting up their own group and we were delighted to welcome people from North Wales who had come to discuss with attendees of our group.

Calvin gave a presentation on The dangers of so called Autism “cures”. He opened his presentation by giving a libel statement, saying that what he was about to say was his own opinion. It was around MMS (Miracle Mineral Solution) where people are given samples and told to consume them, not knowing that the sample is “Sodium Chlorate”, i.e. bleach. Apparently when children are ill from taking the solution, they are told it is only their body purging the Autism!! Medication is sometimes necessary, but always check what you are taking. There has been a petition put together by Emma Dalmayne regarding MMS and she infiltrates certain websites, Facebook etc., to try and find out more information. The group discussed this topic www.change.org/p/jeremy-hunt-make-autistic-cures-illegal-in-the-uk. We are not sure if any children have been hospitalised, but some parents have been arrested for Child Abuse.

Linda also talked about how we have quite a few long standing members who have attended most of our groups and how we are seeing new people attending. Primarily we are a group for adults on the Spectrum. When we discharge people, we discharge them to the group but not children, they have no support group at the moment and families in North Wales are keen to set one up. Action for Children and Spectrum Wales are thinking through ideas.

Elspeth talked about how we can replicate out group elsewhere. We want other areas to have a group too so people don’t feel alone after diagnosis. We, as Axia ASD Ltd can only cover our group and hope that others can branch out and help with new future groups elsewhere. Quite a few people volunteered their services in helping to do this.

Calvin spoke about how he is writing a book for parents and professionals about individual interests so they can understand more. So far, Calvin has written about Anime at the moment and hopefully in the future will write about, video games, comics and possibly Sci Fi. Elliot spoke about how he is currently writing a fiction book and asked if he could post about it on the website and we would be delighted to do so.

Dream spoke about how he met Luke Beardon at last year’s Axia conference and how he talked about how being in the right environment makes him feel Ok and about how being in the wrong environment doesn’t.

I was a printer in a previous life, served my time for 23 years. Following hearing Dr. Beardon’s perspective at Axia’s conference, one of the things he referred to I interpreted as less “me being broken” and more “I’ve been in the wrong environment”. There is absolutely nothing negative with Autism per se, but environmental factors alter how it manifests.

 

It occurred to me recently after finding this old colour swatch that it served as an interesting analogy. The purpose of the “quiz” from the printers point of view was to explain to customers that the paper affected how the ink would look. If I were to think of my Self as “Blue Ink”, then that is what I am. However in this example, on nine different types of paper, nine different hues can be observed from the identically same ink. Ergo – the ink does not change but the environment alters the ink’s appearance.

Linda spoke about how we have all come from different areas today to be at the group, these included, Flintshire, Crewe, Wirral, Sheffield, London, Chester, Wilmslow, Macclesfield, Sandbach, Nantwich and Congleton.

We discussed CHAPS and their groups, how they support adults and children. A couple of people here today tried to go to a ChAPS meeting in Winsford, but when they arrived they were too nervous to attend. We spoke about the difference between our group and theirs and the common feelings were very positive for us. People felt a connection, found being able to talk to Carly about the group and its agenda reassuring beforehand was very helpful, the group is welcoming on arrival and it’s nice to get the personal contact. Organisation and structure was also welcomed. Linda said that knowing you are not alone is important and that there is someone the same as you. It’s important knowing that you are not going to be judged. After you are diagnosed it is a regular place to go so you are not on your own. It’s comfortable and stress free, relaxed and most welcomed the idea that you do not have to participate if you don’t want to. Some groups aren’t helpful, lots of people moan about circumstances. It was also good to hear how comfortable people are finding the group. The general opinion of the group was that it is good to have a diagnostician present and how it gave confidence. We also agreed that confidentiality was a given.

It was also talked about how friendly it was a Linda’s office, very different to other experiences

We discussed the Manchester Conference for next year being on 24 February next year and asked anyone who was interested to give their names at the end of the group and hopefully we can block book some seats, the cost of this will be £10.00 and the conferences is about “Autism and Offending Behaviour”.

Linda spoke about the books she had bought today, they were, You’re so Clumsy Charlie, You can’t do That, Sexual Health & Relationship skills, Neuro Tribes, The Geeky Chef Cook Book, Pretending to be Normal and ADHD. It was also suggested that Linda write a book about Dyspraxia.

We spoke about the Autism Alert Cards and how the idea evolved from a talk by Elspeth on managing anxiety. They were purchased by some members of the group at a cost of £2.00 each. They are for adults and children who have been diagnosed by Axia ASD Ltd. We also spoke about how we had been approached to see if we could get them translated into different languages for people travelling abroad. We have so far had volunteer to translate it into German.

Our next monthly post-diagnostic support group will take place on:
Wednesday 7 December 2016 between 12pm and 2pm at the Lifestyle Centre