Post-Diagnostic Support Group – August Minutes

Minutes of the fifth Post-Diagnostic Support Group
12th August 2015

Today’s group was attended by 16 people. 8 apologies were received prior to this.

Items discussed were:

Linda began by explaining the function of the group for people who were attending for the first time. The function of the group is to serve many purposes. Firstly so that when Dr Buchan discharges people she doesn’t discharge them back to nothing but rather discharges them to the monthly post-diagnostic support group (dates of which are on our website here) and also our Facebook page, Twitter account and Film Society and Calvin’s Twitter account. Calvin, at this point, also pointed out how much we welcomed user content and submissions and comments from anyone connected with Axia ASD Ltd in whatever capacity. He highlighted some of the brilliant animations, songs, book reviews and film reviews that have been done by people connected to Axia ASD Ltd.

Another function of the group is for Dr Buchan to be able to share advances in research and any other pieces of information that people with Autism, Asperger Syndrome and so on should have access to.

Finally the group serves a purpose for where people have issues to do with Personal Independence Payment and so on where they need a letter from their Consultant. Dr Buchan is happy to write that she has seen people if they attend the group, albeit just for a short period of time.

We then moved on to the main items of the agenda and Linda asked about the group’s experience of recent television programmes – The Autistic Gardener and Girls with Autism . The Autistic Gardener was a series whereas the Girls with Autism was a one-off documentary.

Calvin also brought to the group’s attention another series they may be interested in called King of the Nerds which is shown on Sky One on Sundays at 7pm.

The Autistic Gardener is actually featured in this month’s Your Autism magazine which along with Asperger United are magazines that Axia ASD Ltd routinely donate to Autism Inclusive. The two representatives of Autism Inclusive present at this group (James Whittaker, Secretary to the group and David Reiser, Trustee) received these.

Books were also given by Axia ASD Ltd to Autism Inclusive – “The Reason I Jump” and “M is for Autism” (related to the television series).

The next item on the agenda was the feedback and next steps from East Cheshire Clinical Commissioning Group (article here) and Linda urged as many people as possible to attend on 1 September so they could influence future service development.

The next item was clarification about the content of the conference Axia ASD Ltd are hosting, the programme and the costs. Just to clarify, you do have to book a place, you cannot just turn up on the day. If you are on any form of benefit (carers allowance, PIP, student, etc) places are £10. If you are not on any benefits the cost is £25. To secure your place at our conference please telephone Carly on 01244 56 76 56 or email carly@axia-asd.co.uk although we pointed out to the group that Carly was on annual leave until 17 August.

We then moved on to the main agenda item which was Housing and Ronnie who was one of the people who had suggested this topic very kindly introduced the topic. He described some of his own housing experiences, in particular in relation to sensory sensitivities but then went on to take it to a wider, national context and pointed out that much of the content of magazines, programmes and so on relate to children and young people with Autism Spectrum Disorder and the group all acknowledged that older adults with Autism are a neglected area. We spoke about some of the supported accommodation options that are available but mainly for people with Autism and Learning Disabilities.

As a consequence of discussing the housing options, Dream pointed out that individuals who are living alone can be exempt from council tax and wrote an article for us here. Calvin also informed the group of the National Autistic Society’s website in relation to housing and their PDF which can be found here.

James and others also shared their experiences of their own housing situations and also we discussed eligibility for social care assessments and whether people would meet the criteria of substantial or critical.

At this point we highlighted the importance of the National Autistic Society in terms of their search engine bringing up important information and we spoke about the helpline number which Danny very kindly phoned over the break and then gave feedback after the break to say that it had been a relatively easy phone call to make. There were a number of options and he said he would often listen to the options, put the phone down and phone again to make the choice of the options and this would felt to be a useful strategy. Despite him not having time to do that he did feel that something tangible had happened and he was going to be sent an information pack.

Other questions from the group emerged around driving, contacting the DVLA in respect to having the diagnosis of Autism and so on. Calvin again searched online and although it is quite a lengthy page, the information required was further down the search engine results N.A.S. page on Driving.

Calvin then explained for the Film Society the October schedules have all been rearranged and he asked the group whether they would like him to review Pan or Hotel Transylvania 2. It was decided that Pan was the preferred film.

Linda ended by saying that the September topic which is on 16 September is going to be Post Traumatic Stress Disorder. Dr Buchan will again draw up an agenda based on any new research journals, television programmes and so on and in addition we all discussed that we would need to carry over an item which was about lobbying in relation to housing. We are not yet sure the nature that would take but we were sure this would be an important thing that we could do.

In relation to the main topic of next month’s group, in Dr Buchan’s opinion, this is a much neglected area and she believes people with Autism may be more susceptible to Post Traumatic Stress Disorder and will explain why next month.