Post-Diagnostic Support Group Minutes – January 2017

Meeting-minutes-pictureMinutes of the Eighteenth
Post-Diagnostic Support Group
18th January 2017

Today’s group was attended by 25 people.

Items discussed were:

Autism Pride and raising awareness of Autism in general.

Linda explained that today would be a relaxed group with no presentation and that we would be speaking about Autism Pride which we had rolled over from our last group. Linda spoke about our quarterly meeting where we talked about maybe having a conference next year and how we would be asking the group to give us their feedback and comments. Linda said she would be handing out post-it notes for people who didn’t want to speak out loud for this and that they could write down what they wanted to talk about. Linda explained how we wanted to talk about a Conference, raising awareness, why we should hold a Conference, to whom it should be aimed at, when to hold one and how.

The overall feeling of the group was that it should all be about raising awareness of Autism which should help reduce stress. One member of the group said that generally people aren’t interested in talking about Autism. This client also said how it would be good to all come together collectively as a group to support each other and how talking about our shared experiences. Ronnie said he would talk about his life experiences as a person with Asperger Syndrome. Another member said it would be good to meet people qho are the same as them and that is would be good to raise the awareness of masks in the Neurotypical world, they commented that coping is very tiring and we should all celebrate coping with our differences. Ronnie again contributed by saying at the last conference that Axia conducted made him feel comfortable and how he felt shielded.

Calvin’s presentation that he did at the last conference got lots of questions from members of the group and the audience, but not many questions were raised by the professionals that attended.

One member said it would be good for one of the group to talk to at a Conference to help break down the myths of Autism. There is a lack of understanding about Autism and people don’t understand and don’t know what to say, which makes a lot of us feeling isolated. Dream spoke about how, when he was first diagnosed, someone said to him
“how did you manage to pull off an invisible disability”
which again confirms that there is a general lack of understanding about Autism. One member said it would be good to let people know we exist. It was also discussed regarding how can we get non-believers of Autism to attend our Conference and the importance again of raising awareness.

Linda spoke about how holding a Conference takes time and costs a lot of money. She also said that the last Conference was attended by a combination of professionals and people on the Spectrum, she felt the ratio was 50/50 for this attendance. She also said that a professional admitted to her afterwards that she knew nothing about Autism before attending the Conference and how she found it very enjoyable.

Linda spoke about how she and Elspeth Bromiley had done a presentation at a GP practice regarding Autism and how she got a good response to this, the number of referrals from that particular practice have increased.

Linda then asked the group to think about how and when can we raise the awareness of Autism. She gave the group 15 minutes to think about this and again members of the group put their ideas down on paper for Linda to discuss with the group after the break.

We then had a 15 minute break for drinks and cake. Calvin had baked 2 cakes as usual, one being a blueberry and white chocolate gluten free cake and the other being a carrot cake.

After the break one member spoke about the ‘million pixel project’ that had been done a number of years ago and how it would be good if we could come up with something similar to raise the awareness of Autism. It was asked if we could make something that will change every day on a theme of “another brick in the wall” but instead of adding a brick to the wall, one would be taken out of the wall and would reveal something behind the brick, to and maybe call it “a myth busting reveal”. Calvin very humorously commented

“Build a wall and make the Neurotypicals pay for it”.
Other ideas were also revealed and these were Podcasts and it was suggested that it would be good if it contained the names of famous people who were known to have Asperger Syndrome. Collectively we talked about who have shared that they have Asperger Syndrome and these included, Darryl Hannah, Dan Ackroyd, Bill Gates, Chris Packham and Gary Numan. One member suggested actors and theatres games and performances, which were like role play but simpler. One member said it would be good to try and access a Journalist to get the message out there and a campaign that was suggested was “Spot the Difference”.
We spoke about doing a walk to raise the awareness of Autism where we could wear T shirts that Scott said he would design and Scott said the group could contribute to the design and also as well as T shirts it would be good to design a canvas bag and we could give these out on the walk and at conferences and include a leaflet, pen and business card in them. We said the walk could be called “Celebration of Autism”, but if we are to go ahead with the walk, it would be a good idea to inform the council and the police. We also said it would be good to let the radio stations know about this walk and Carly said we could contact North West Radio Station. We spoke of where the walk would be conducted. We suggested around the Chester walls and some members thought it would be a good idea to conduct the walk in more than 1 place too.

One member came up with a very good statement about Autism, which was “Autism doesn’t have one face”. One member of the group, who is in fact a landscape gardener suggested that we may want to contribute an “Autism friendly” garden to the next years Royal Horticultural Show.

We also spoke about how Axia would get involved and hopefully contact GP’s, and schools etc. Also it would be good to talk on the radio, and Dream spoke about how he and Dr Luke Beardon had a conversation on the ‘listening project’. We also discussed various social media, Calvin and Reece were talking about doing a regular Vlog, various people mentioned Podcasts, which again is a very clever way of getting the message out there for a long period of time. Several people mentioned having a YouTube channel, we discussed the positives and negatives of this and one group member felt we should be careful of the negatives as people can be cruel on social media.

The overall opinion of the group was that they want us to hold a Conference in 2018. We then said it would be good to hold the Conference in Chester and Carly was to look at booking it for late 2018, possibly the end of September. The main message would be, not being noticed, feeling isolated and masking.

Linda then spoke about the Autism Alert Cards and offered them to the group. She then spoke to group about how we had retained the Salford referrals and also would be getting more referrals from North Wales for children.

Linda also confirmed that at the next group we would be talking about Myth busting, Podcasts, a possible YouTube channel for Axia, Games and Performances and Vlog’s. We will also be talking about finalising the details for Autism Pride, where we are going to meet, where we are going to walk and how to get the T shirts and the bags designed.

Our next monthly post-diagnostic support group will take place on:
Wednesday 1 March 2017 between 12pm and 2pm at the Lifestyle Centre

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One comment on “Post-Diagnostic Support Group Minutes – January 2017
  1. ronnie says:

    Thank you very much for the Detailed but Easy and Interesting reading of the Minutes Carly.
    For me Personally having Originally suggested holding a 2018 Conference it is very rewarding for my idea after waiting 54 Frustating Years to be going ahead.Thank you very much to all who voted in favour of Holding a 2018 Conference.

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