Parent Carer Meet Up 31st March 2017 Notes

Marc Goblot (Chair) with branch volunteers Julie and Claire, plus parents. Please note views below are from parents and carers and not necessarily the views and recommendations of the NAS Branch.

Parents expressed well-founded anxiety about their grown-up sons and daughters both now and in the future. Social skills, money management and housing were key concerns.

  1. Sons/daughters were isolated in their own rooms-not going out, not meeting others. This meant the parents were very worried about them and tended to stay at home to ensure the well-being of their grown-up children.
  2. Training in social skills , money skills, internet safety, benefits, housing were all needed. Adults with ASD often could not manage their money at all or deal with bureaucracy , leading to loss of benefits and other problems. They were treated as adults, but were too vulnerable to manage without help.
  3. Parents were not sure how this could best be delivered as adults with ASD were often reluctant to travel to attend courses. Ideas were: Use real life situations ; individual help; on-line chat resources or possibly virtual reality/avatar programmes such as Marc had encountered at Hao2.eu
  4. Housing was a big problem ; adults with ASD were either being left living with parents or allocated shared housing with unsuitable fellow tenants. They are extremely vulnerable in the community and prey to drug dealers and others who spot them as soft targets and take their money. Left unsupported in shared accommodation meant they were made anxious and frightened when fellow tenants were noisy or did not understand them.
  5. Bullying had had a severe adverse impact on adults with ASD- in one case a group had deliberately targeted a young person via the internet .
  6. Carers were very concerned about what would happen to their sons/daughters  when they , the parents died or became ill or infirm.
  7. Employment was a problem. Marc spoke of AS Mentoring, providing for a range of individual needs such as for jobs and other support, run by the former head of NAS Prospects. Auticon is another company employing those with ASD. Locally the Camden Society via the Greenwich Worktrain helps people with ASD into work, volunteering or training which could lead to work.

Other suggestions:

  1. Shooter’s Hill College was praised-staff had made a lot of effort to encourage a young person with ASD to attend.
  2. Tangled Feet, a theatre group in Croydon, was mentioned as a helpful place.
  3. Parents would like GNAS to run trips where adults with ASD would not have to chat to others, but could enjoy visits to museums etc alongside others and feeling safe.
  4. One idea was to run the Hub like the Saturday Club , with a range of sensory and other opportunities. Film–making might be popular.
  5. Marc spoke of setting up a social enterprise for creative digital media using a mix of those with and without ASD.
  6. Parents were keen to attend more meet ups like today’s as well as speaker events. One parent shared a valuable tip to another which seemed very helpful to her.