Susan Chambers from PASDA outlines the work they do to support families of autistic adults in Edinburgh and the Lothians.
The statistics for autistic adults are sobering:
Knapp 2014 The cost of supporting an autistic individual during their life span with an intellectual disability is £1.5 million and those without £0.92. This includes the economic loss for parents.
NAS 2015 58,000 autism families in Scotland
NHS 2016 Autistic people have more difficulty accessing healthcare or discussing health problems.
Mackay 2018 Average age of diagnosis in Scotland is 34
NHS May 2018 79% of autistic adults are socially isolated
Rodgers 2018 Anxiety is significant in 50% of autistic adults
Hirviloski et al 2021 The average age of death for autists 54 but 70 years without autism
Autistica 2022 Autistic adults are more than 9 times more likely to commit suicide. You can find more information in the report: Autistica
The autism prevalence rate is currently 1 in a 100 but many adults remain undiagnosed, especially females. Autism is inherited and when a child/adult is assessed for neurodiversity the parents often realise that they are also autistic. Many professional organisations do not understand the role of families or autism in any depth. This leads to a huge accountability gap where autistic families frequently find themselves floundering.
PASDA was established over 25 years ago to guide parent-carers to find appropriate help for their adult family member. This is still the case as there is remarkably little post-diagnostic support for families with an autistic family member or assistance to find the diagnostic pathway. The waiting list for a diagnosis is still very long and the waiting time for mental health appointments is over 3 years. Although autism is not a mental health condition, the lack of appropriate support often leads to mental health problems such as high anxiety and depression.
1 A private session to discuss individual situations with someone who has lived experience
2 A printed or electronic guide to services in the Lothians
3 Information sessions on topics such as guardianship, Power of Attorney, benefits
4 Social events e.g. coffee mornings, guided walks, festive events. The social events are often cathartic for carers as they realise they are not alone. They are usually lonely and isolated as nobody has believed or listened to them for a long time, even other close family members.
5 A bi-monthly programme of workshops by a psychologist who is autistic and has an adult autistic son. The workshops provide practical help and advice to recognise the causes of autistic behaviour often related to high anxiety. Armed with knowledge, the parent-carer can provide a more harmonious environment for their adult family member.
For more information, please visit PASDA’s website
Susan Chambers is PASDA Convenor.