Post-Diagnostic Support Group Minutes

Minutes of the Second Post-Diagnostic Support Group – 29 April 2015

Remaining items from previous group were carried over. Linda introduced the self-assessment framework which has recently been completed and advised that it will go public in June. We then discussed the notion of a conference and the group were extremely positive about this. The suggested programme which has been agreed by members of the group is attached and we have seven volunteers (3 women and 4 men of varying age ranges).

The group were very keen that the conference went ahead in October of this year although Carly had reservations about getting professionals as what she perceives as short notice.

Linda then asked the group how they would like the group to be evaluated. The unanimous decision was that the group should simply be evaluated by if people turned up.

A number of topics had been suggested and we tried to prioritise those. The next session will be carried out by Elspeth Bromiley. A session on managing anxiety had been requested. We currently work jointly with Elspeth Bromiley as she carries out post-diagnostic support work for us for people who are funded privately, for example, self-funded healthcare and she is a very experienced therapist. The group suggested the following format for all meetings. The first fifteen minutes or so to be networking, tea, cakes and so on then a focus on a particular topic which will be posted in advance on our website and the last half an hour for updates, sharing of information and so on.

The topics to be focused on over the next three months are managing anxiety, supported employment/meaningful employment and Autism friendly homes/where one lives.

Dream, our I.T. guy brought up adding musical content to the website and Calvin pointed out that originally the aim was to get more interaction going and that he was starting with film as the first place to go hence the Film Society. However, since then we have had book reviews, user reviews of films, animation and so on and are keen to add all forms of other media to enable ongoing interaction. This was agreed.

We then discussed the idea of getting a book together of people’s experiences particularly of the diagnosis and Megan had done a particularly helpful diagram to show how we might progress that. There were several volunteers to contribute to that book and we will be advertising on our website for further volunteers. Carly to action.

We then hoped to be able to welcome Sharon Parke to the group to discuss a number of questions she had regarding post-diagnostic support. Unfortunately, due to family circumstances she was unable to attend but Carly had already written out sheets with the questions on and a variety of means were taken to gain peoples’ views. These questions will also be posted on our website (HERE) for people who were unable to attend that could email their responses to carly@axia-asd.co.uk 

The responses were collated by Linda after the group and these are the following findings.

23 people attended the group. 5 people left before this item on the agenda and there were 16 responses to the questions. It is to be noted this is only the second of our post-diagnostic support groups. All previous support groups have been co-production events. We also had a number of apologies from people who were unable to get to the meeting, either because they were physically unwell but more frequently people who were either unable to physically get themselves to the group, for example, transport issues or psychologically get themselves out of their home. There is a clear, unmet need in supporting people outside of their homes and getting them transport.

1. Do you find the groups helpful?

Can’t comment because this if the first one I have attended (N = 0) Yes. (N = 8).

Comment given – Yes it’s nice to get together at Crewe Library.

2. Are they run often enough?

Yes (N = 6). No (N = 5). Don’t know (N = 1).

Comment given – For me I would like every 4 weeks but I don’t think that’s practical.

3. Do they address any issues you might have?

Yes (N = 7). No (N = 0). Don’t know (N = 2).

4. Does the group meet your personal goal/need?

Yes (N = 6). No (N = 0). Don’t know (N = 2).

5. Do you have improvements about the group?

Yes (N = 4). No (N = 3).

Improvements suggested:

More locations

A focus on adults

Contact with a wider range of people on the Spectrum

Structure into topics of discussion and aims to achieve (this will be actioned)

A group closer to home

People need to be told not to talk over each other (Linda is trying to action this and will keep on trying)

The room is quite echoey I would like to be able to hear better

6. What would be helpful in terms of information/signposting?

Comments:

Higher Education Colleges need far more training about Autism Spectrum Disorder

Posting the agenda, locations and dates (actioned)

Email notifications or letters maybe (Carly to explore)

A list of sympathetic employers

Clarity in where to find specific help in dealing with different authorities (employment, benefits, medical, etc.)

Posters in Doctors Surgeries, public buildings, for example, the library about the group’s existence (we would be happy to produce the poster but would need help regarding how to distribute)

An email system or using the website (I don’t use Facebook). Carly to explore

Any other views:

Some people expressed quite personal views which we will send directly to the commissioners.

Other views:

The option of having smaller groups

I would like help with finding employment and anxiety problems

I am delighted and very grateful to be part of this group

I enjoy these groups, being able to meet people with Aspergers and offering and receiving help and ideas

The original forms will be sent to Sharon Parke to make her own analysis of the responses. Linda to action.

It is proposed that Linda will bring the same questions to the group in six months time to make a comparison. Carly and Linda to action with permission of the group.

Subsequent to discussion with the group the following is a suggested programme for the conference:

Conference

• 9.30 am Coffee and Refreshments.

• 10.00 am Welcome and Introduction (Commissioners) 10 minutes.

• Introduction to Axia ASD Ltd, meet the team (Linda and Axia) 10 minutes.

• How to refer and what happens next (Carly) 10 minutes.

• What have we learnt about people on the Autism Spectrum, the diagnostic process (Linda) 60 minutes.

• 11.30 am Break – Coffee and Refreshments.

• 12.00 pm The Portrayal of people on the Autism Spectrum and ADHD in film and TV (Calvin, self-proclaimed Nerd Consultant and Head of Axia Film Society) 30 minutes.

• 12.30 pm. The Experience of being diagnosed (Linda) 30 minutes.

• 1.00 pm. Explaining the afternoon and a chance for people to write down any questions they have for the panel. 15 minutes.

• 1.15 pm onwards. Lunch will be available and a chance to visit exhibition stands. Also, chance to write down any further questions people would like answered after lunch.

• 2.30 pm. An opportunity to have your questions answered by a panel of individuals who describe themselves as being on the Autism Spectrum.

• 3.30 pm. Break

• 4.00 pm. Final opportunity to ask questions.

• 4.30 pm. Reflections on the day (Commissioners).

Attached are a list of people we could approach regarding having exhibition stands:

Axia ASD Ltd

Autism Inclusive

University of Chester Careers and Employability

NAS Chester branch

Orkid Ideas Ltd

Dyspraxia Foundation

SENAD Group

YPS Psychology Ltd

Rhino UK Ltd