Post-Diagnostic Support Group Minutes – June 2018

Meeting-minutes-pictureMinutes of the Thirtieth
Post-Diagnostic Support Group
6th June 2018

Minutes – taken by Linda Saint
41 delegates attended the meeting
plus 1 very cute & vocal therapy dog in training.

Dr Buchan opened the meeting and explained the agenda. Items for discussion was the GDPR policy and what that means and also a presentation later by Autism Inclusive. Dr Buchan then introduced Dr John Biddulph.

John Biddulph gave a very interesting talk and presentation, which was full of humour. John started by talking of what his sensory experiences were when seated within the quiet zone of a train. It was his experiences and perceptions of his fellow travellers, how they smelt, good & bad! Being able to tell what they had been eating. The standards of their hygiene!  He described people who were around him obviously struggling with a cold. Given their behaviour it would perhaps have been better had they not travelled and kept their illness to themselves. It was interesting to realise how all of these things can make a person with ASD feel very uncomfortable and stressed. It was also amazing at how different things can affect so many people.

John started to talk about his life from being very young 2+ years to a young man of nearly 60 ish. He was born in Cromford, Derbyshire and it sounded as though he had enjoyed his childhood, although school life had at times been difficult. John had a lovely relationship with his Dad. John told a touching story when aged about 2 he mirrored his Dad whilst he was taking a photograph. They both bent their knees in unison as John copied literally what his Dad had asked him to do.

John’s school life wasn’t without problems due to bullying. Also, the teachers as neuro typical people would communicate in a neuro typical way. John’s responses would be correct but he would be misunderstood, even though John had responded correctly to what was asked of him. This would cause him anxiety. I came away wondering about the clarity of our questions. A good example of what John experienced following a field trip was the teacher asking him to do a project and record everything he could remember about the trip. John spent days and his lunch times doing his project as he had responded exactly to the task!!!!

John had few friends growing up but the few he had seem very genuine. Obviously when being very young his superb knowledge of Thunderbirds helped him in this area. I did have a degree of sympathy for poor “Malcolm from Matlock” who was a guinea pig for one of John’s teenage experiments. Poor Malcolm ended up with two brown fingers!! John has a super friend “Ian’ who really understands him. Ian has been a life long friend, someone for John to rely on.

John was going to progress to university and do chemistry, however at the last minute he decided to pursue his love of music. His parents were supportive of his change.  Now John runs Autism Outreach, which provides ASD training, various courses, mentoring and counselling. 

John has been married for 38 years and is the father of 3 exceptional children, one of whom is on the spectrum.

What does John find difficult, as follows: 

  • Sleep – each day awake at 4am, however he will need to allow time within his day to rest and relax. He must make adjustments to find this time.
  • Social Situations – Doesn’t really enjoy some of them and can misread the Norm.
  • Shopping – Is difficult given his sensory feelings.
  • Parent Evenings – Can be difficult and would rather avoid.
  • Work – Must allow time to accommodate sleep pattern and his sensory needs.

What advice did John have for others with ASD? John urges people to, accept the situation, work with it and know your own needs and strengths.   He feels it is important to realise your own differences but also to be able to understand a neuro typical point of view.

The conclusion from John’s excellent presentation was it is not Autism awareness that we should strive for but Autism understanding.

Next we had a brief presentation from AUTISM INCLUSIVE, Karen Betts & Jason Podmore, Autism Inclusive, Unit 8/9 Brierley Street Business Centre, Crewe, CW1 2AZ See also facebook. This is a new drop in centre. Karen & Jason who both have ASD have set this up and it is proving to be very successful. They listened to what people needed and the loneliness out there. Presently people are meeting for friendship and fun. Axia is very keen to have strong links with Autism Inclusive.

The next meeting of the support Group at the Crewe Life Style Centre is 18 July, 2018 commencing 12 noon and finishing at approximately 2pm. Sarah Hendrickx is presenting and the title of her presentation is “Happiness”.

Finally, we did discuss the need for us to try and support each other. We all face problems especially trying to be understood.  Perhaps if we can share our experiences a little, we can work towards solutions. There are so many people who have no one to help and even just to be able to talk to someone can have a very positive out come.

Linda Saint

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