Post-Diagnostic Support Group Minutes – March 2017

Minutes of the Nineteenth
Post-Diagnostic Support Group
1st March 2017

Today’s group was attended by 33 people.

Items discussed were:

Autism Awareness, Autism Pride, and our Conference which will be taking place in September 2018

Linda started the group by introducing herself and everyone who works for Axia who were present introduced themselves and gave a brief summary of their responsibilities. Linda then spoke about Axia’s website and informed everyone that if they wanted to know more about any of us that we have a “Meet theTeam” page on there. She then went on to explain how we structure our group and how this was formulated with the group’s own input.

Carly spoke about what we intend to do to celebrate Autism Pride which will be a walk on the Sunday 18 June. Carly explained that we will need an idea of the number of people who want to walk with us. We have asked everyone to let Carly know if they are coming, you can email her at carly@axia-asd.co.uk. We will be meeting at Northgate Arena and intend to walk from there around Chester to Grosvenor Park where we will then have a picnic and enjoy the rest of the afternoon there. Everyone is welcome, including children. She also spoke about having a colour theme, so we would welcome ideas and as yet we are not sure of the time we will be meeting, but it will probably be in the afternoon. The walk will take about 20 minutes. Carly also explained that the canvas bags which we spoke about at our last meeting were not going to be initiated as the cost of these was very expensive and we had to order in large quantities. We hope that everyone appreciates this decision and understands our reasons for not pursuing this idea.

Linda spoke again about the ‘million pixel project’ idea from our last meeting and we also said that we weren’t sure about how we could implement this, but we still think it is a good idea. Linda also informed the group that Luke Beardon was going to come to our group in May and speak for us. She explained how he speaks about Autism as a strength. Calvin spoke about the VLOG idea that was spoken about at our last group. He want these to be based on Anime. He wants to have 4 meetings to compose these. The first one will be at the end of March, then the end of June and September and the beginning of January will be the final one. So it will be the 4 seasons of Anime. He wants people’s opinions on:

• Best opening
• Best ending
• Best surprise
• Best sequel
• Best original

These will be recorded at Red Hill House and the session will last approximately 2-3 hours. Linda also spoke about Podcasts and how we can facilitate that if anyone is interested.

Carly then spoke about the Conference which we have arranged for 21 September 2018 which will be held at Chester Racecourse and how we had come up with a title for this which was “Beneath The Masquerade”. Carly and Gail then handed out the draft format which we had compiled. Carly explained that Luke would be speaking, also Linda would be speaking and how we thought in the afternoon we would be open to workshops. Carly then explained the costs that we intend to charge for entry. These are, £50.00 for people on benefits, £100.00 for an early bird and £150.00 after that. Local charities who would be attending were hoped to be Chaps and Orkid Ideas and also Remploy. We want workshop contents to come from the group. These should be relaxed and informal with a question and answer format. People can talk about their lives and we can speak about there being “no one face of Autism” and we hope that the afternoon sessions will reflect the diversity of Autism. Linda spoke about how annoying it is when people who mask their difficulties are not recognised as having Autism. She is hoping that the title of the conference will intrigue professionals. As a way of advertising our Conference we will be producing a flyer and Linda explained how we need help with the design. When we spoke further about the Conference it was a general consensus of the group that they thought we could have a better name for this. So we asked for ideas, these were:

• Behind the mask
• Beneath the mask
• Making the mask
• Hidden behind the door
• Lifting the mask
• The real face of Autism
• Chips/scratches in the veneer
• No more hiding
• The many masks of Autism
• Masking and it’s multiple faces
• Hidden Truth

We then spoke collectively about the above ideas and then mulled over quite a few different connotations of these and the following ideas were put into the mix:

• Understanding the neurotypical world
• Autism and Social Adaptability
• Autisms, Beneath the Mask: The real faces of Autism
• Autisms Multiple Masks “Beyond the Barrier”
• Autisms True Faces
• Autisms Masks, a caricature of a nuerotypical

The ideas just kept coming and coming and we all then decided that it was now getting very confusing and perhaps we should have a more detailed discussion about this. Ronnie also commented that he wanted to do a talk at the Conference and how he wanted the whole audience to be able to hear him if they so wished and how he would be happier doing this rather than speaking at a workshop.

Linda then announced that it would be good to devote the final session of the group to these subjects. She decided we would split the group into 2 halves. One half would be designing the flyers and the title for the Conference. The second group would help design the Conference programme.

Linda spoke about the books that she had bought along and invited member of the group to borrow them and spoke about how she had reviewed some of the books herself for the publishers.

We then had a 15 minute break for tea, coffee and cake.

Both sets of groups had some very interesting discussions and they both equally came up with some very good ideas. The title for the Conference will be Autism “People Behind the Masks”. This group also came up with some very good ideas for the flyers and it was decided that Scott and Dream will draw up a few samples of the ideas collected today and present them at our next group so the group as a whole can chose then the one that they think is the best. The second group decided agreed with David Reiser that he will talk about Autism and Social Adaptability. Luke Beardon has kindly agreed to be a keynote speaker, but can only join us the the beginning of the day due to other commitments. They also thought it would be good to have a panel of 4 people who could do a question and answer theme. Ronnie would like to talk and would invite questions. There was also the suggestion that there could be a workshop for and run by parents regarding how children mask their difficulties particularly at school.

Linda summarised that we have spoken about Autism Pride, Vlog’s and the Conference.

The programme for the Conference will be developed by Axia-asd and brought back at a later date to show to the group.

She also spoke to the group about the Autism Alert Cards that we supply at a cost of £2.00.

It was announced that the next group would be held on 12 April at the slightly altered time of 11.30-1.30 where she will be doing a presentation on Sensory Sensitivities. Linda also said she would bring along the sample flyers for people’s opinions on them.

Carly ended by announcing to the group that Axia are sponsoring the NAS Professionals Conference next week in Harrogate and how we would give feedback in April regarding this. She explained how Linda had been asked by the NAS to speak and also will be chairing the older adults streams over the two days.

Carly, informed the group via a leaflet of “Health Watch Cheshire East” who you can contact if you have any comments about local services.

Our next monthly post-diagnostic support group will take place on:
Wednesday 12 April between 11.30am and 1.30pm at the Lifestyle Centre