Minutes of the Twenty Seventh
Post-Diagnostic Support Group
31st January 2018
and once again a lovely “Therapy Dog”.
Linda introduced herself and the members of the Axia team who were present.
The first topic that Linda discussed was an article that has been published on our website regarding “Munchausens Syndrome”. How loving mothers, who have done nothing to harm their child are wrongly being accused of Munchausen’s Syndrome by Proxy. It is wrong how they are being accused of fabricating illnesses. She also said how a lot of these accusations are coming from schools. The full article can be accessed through our website HERE.
Linda then spoke of how this is a very proud time for her and for Axia as we have been nominated by the NAS in the category of “Outstanding Health Service”. This is truly a great moment and we are all very proud and are all rooting for Linda to win this award.
We brought along to the group a large collection of books and videos and encouraged people to borrow them. Linda said that she only brings books that she has either read and reviewed or books that have been recommended to her. DVDs are ones that Calvin has recommended.
Linda asked the group how they found the lighting levels in the room. The consensus of opinion was that the group preferred the lighting off. We do acknowledge that this was a majority decision and that some members preferred the lighting on, it is impossible to please everyone, but we felt that today the lighting was better off. On a duller day this may not be the case and if it is too dull we would put the lights back on.
Hannah Williamson: Hannah is a Liverpool Psychology trainee. She qualifies in September and we are delighted that she will be working with us after then. She will be working at least one day and week and hopefully two. She will be presenting the next Post-Diagnostic group and her theme is “Aging and Autism”. Hannah is also compiling an Annual Report for Axia and will hopefully be presenting her findings to the group in March.
Sheena Mansell: Sheena is Linda’s friend who she has known for many years. They go to lots of rock concerts together, bands like Iron Maiden and AC/DC. Sheena has a son on the Spectrum and she will be working with us for two days a week carrying out diagnoses, follow-up appointments and therapy.
Lynn Rollinson: Lynn is a friend of Elspeth Bromiley’s and she will be working with us for one day and week. She will be conducting diagnoses and also will be conducting therapy sessions.
Sue Power: Sue is Linda’s niece and she is an English teacher. She is joining the admin team in a full-time role in April and she will also be our Education Lead. She will be able to conduct school observations in future and this will be very helpful to Axia.
Our Operational Manager Carly was not able to attend the group again and we acknowledge that she is a loss to the group, but we are so busy at Axia that we have to have a presence in the office at all times now. Carly is not only Linda’s right hand, she is also “her left hand and both her legs”. Carly will be training Sue and between them they will attend alternate groups in the future. Linda reassured everyone that just because we are getting “bigger”, we are not losing our core values: our partnership model. Axia is totally committed to the post-diagnostic support group as we benefit and learn from attending as well as enjoying attending.
Karen is now chair and Pod is the vice chair. They are now re-launching and they are funded as a charity. Their group is now hoping to be run as a social group, an activity lounge. They will be holding Steampunk nights, Art nights, “stitch and fit” (sewing). They acknowledge that there is a high “nerd” count now and they want to present opportunities for this. They want to be interactive. They hope to have a Youth Club for kids eventually. They say it can be a geek fest where you can “be yourself”. They acknowledge that it is all about “fitting in” and they want to focus on what people want to do.
One group is held on the first Wednesday evening of every month between 7.00-9.30pm. This time may change in the future and may expand, they are flexible on that.
Linda also explained to the new members of the group how we have co-produced our group with input from our members. The consensus of opinion was that the group liked structure and presentations. We always break for tea, coffee and cakes. Unfortunately Cal was not able to provide cakes for us today as he is on holiday, but we were kindly donated cakes and biscuits by one of our clients, this was much appreciated. Our main ethos of the group is that we are respectful to everyone at all times.
The next question was about how is some situations we say something indiscreet or what can be construed as “inappropriate” without meaning any offence and how we can then ruminate over and over about this and is this common”. The answer to this one is “Yes”. Autism is a disability, people struggle with social communication and interaction. No offence is intended. People with Autism are very honest, moral and do not like breaking rules. They have values. They do not like lies or cheats, and they don’t like it when people don’t say what they mean.
Dream asked a very interesting question around Autism. Simon Baron Cohen had said that he thinks “everybody has some Autistic traits”. Dream said how can you have Autism or traits of Autism. There is a difference scientifically. Most people receive a diagnosis because they have been suffering. This should not be minimised. One of our members Ed said that you could also say that being a bit Autistic, was the same as saying you are a “bit of a billionaire”. You can’t say we have all got bits of Autism. You are either Autistic or you aren’t.
He said that it is always helpful to have a strategy document. How it is always better to write down what you need. Identify and describe the reasonable adjustments for that situation. Sign this document and hand it over. It is better to have a minuted meeting to discuss these. Dream stated that it might be more helpful if the document is titled “Notice” as they do not tend to ignore a notice as easily as they may a “letter” or a document without title.
Dave stressed that the whole point of a diagnosis is to help with “self-acceptance”. As a person with a diagnosis you have a Legal right to be understood as different. The document that you produce is an official declaration of what you need, it is your legal right for this to be adhered to.
Lynn spoke about the Equality Act and how the “Best Endeavours” should be used as a code of practice to help people.
We hope the group empowers each other. People spoke about it being a grinding battle and how you have to keep fighting. It was also said how to give you social confidence it is helpful if you have an advocate to support you, who can talk on your behalf.
- Space for Autism
- Cheshire Carers
- NAS – very good source of information, they have a check list for points scores
- Fight Back – In Burnley, this is run by a lawyer, they can help
- DPAC – Disabled People Against Cuts – very helpful
Linda thanked everyone for attending and announced that the next group will be held on 14 March 2018 between 12.-1.30.
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