Some people talked about how they were supported by professionals in different ways. One man, for example, found a local job support agency helped him to find a job and provided support within the job. Another man had a care worker who visited every couple of weeks and helped him with organising his home and reducing the clutter he lived with. A few people lived in supported living accommodation and had round the clock support.
Mary is getting more used to going out and about with the help of her support worker.
‘If someone says ‘in four weeks time’, I think they mean in four weeks time’
While a few people had good experiences with the provision of appropriate support, many had not. This was often related to the lack of understanding professionals had about autism and was very frustrating for people.
Debbie describes how she has not been able to get the support she needs.
It has taken a long time for Alex to get an appropriate care package. She had a long period of…
John’s problems with attention have not received the support he would have liked.
Alex thinks she ‘fakes understanding’ sometimes and social care professionals don’t really…
Alex describes her experiences of direct payments and commissioned services.
Alex’s social worker admits she has no understanding of autism which is ‘scary.
Sam talks about the support he has had that hasn’t helped him.
Funding issues could interrupt the support people had. Ian, for example, had the support of a psychologist and an ‘autistic nurse’ which was helpful until the funding was withdrawn.
Those people who were in further education or were about to start further education, felt they had been offered appropriate support to facilitate their studies (see ‘Employment’ and ‘Further Education’).
A few people talked about how they felt that health and social care professionals had not been very supportive towards them. This was linked to a lack of understanding and awareness about the autism spectrum and, in particular, Asperger syndrome. A few people found that their GP’s had little knowledge about the autism spectrum and one woman talked about taking a counsellor who worked in the autism field to the doctors with her to help her explain what she needed to explain.
The educational psychologist didn’t think James would go to university.
Support workers have to understand John L’s interests and be curious in order to support him effectively.
Paul I was told by a GP to get on with it when he was depressed. The GP apologised after he emailed the practice.
Some people talked about the kind of support they would like.