The people we talked with had differing support needs [see Everyday life with autism and organisation skills]. Some people we talked with had high levels of support need and had twenty four hour care worker support. Other people, whilst leading apparently normal and successful lives, still experienced disruption or difficulty in their lives and their relationships and their ability to function due to their location on the spectrum.
Some people talked about needing very little or no support, or trying to manage without support. One woman, for example, talked about how she could do her own shopping “and things like that” but needed support if she got a job [see
Employment].
Professional support
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. 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.
Autism support groups
Several people talked about being involved with an autism support group which largely involved meeting socially to do things like ten pin bowling, going to the cinema or chatting in a pub. They enjoyed meeting other people who understood what they were going through.
One woman described how it was “a breath of fresh air finding people that would understand me and would accept me”. She attended a parents group because the group for people with Asperger syndrome had mostly men attending and they did activities she did not enjoy. One woman talked about how her social life revolved around friends that she had made through running a support group with her partner who is on the spectrum.
A few people talked about how they did not feel comfortable with the thought of autism support groups or how there were no groups that met at a time or place that was convenient to them.
Internet
Some people we talked with discussed talked about using the internet chat rooms and forums as a form of support. Talking online was an easier form of communication for some people because there was no face to face contact which meant no difficulties interpreting facial expressions or body language. Some people found it much easier to express themselves online than in face to face contact.
One woman talked about how she is very cautious about using internet chat rooms.
Other types of support
Several people said that their family and friends were very important to them. One woman, for example, spent every weekend at her parent’s house and had a good relationship with her brother and sisters. Another man, who experienced serious difficulties at work, talked about how supportive his parents were both emotionally and financially. A few of the people we talked with discussed how important their faith was to them.
