shared by Healthwatch North Somerset
CASE STUDY – Parents views on how services offer support where their adult son or daughter has Mental Health (MH) issues & High Functioning Autism (HFA) or Asperger’s Syndrome (AS)
Author: Cirlei Ioris, Public Health Master’s Degree dissertation. ‘What are the mental health needs of adults with Asperger Syndrome or High Functioning Autism? A parental perspective.’
This study is on adults with AS or HFA who suffer from at least one mental health problem such as severe social anxiety and depression. A number are diagnosed with suicidal ideation. They live with their parents. Parents’ views were explored on the impact of mental health problems, not only on their adult children with autism but also on the wider family. The aim is to add to understanding about the mental health needs of adults with AS/HFA, a group considered understudied and underserved. This research examined the support they’d received and the support they considered they would benefit from.
The report highlights the challenges and difficulties faced when procuring appropriate treatment and support for mental health conditions from adults with AS/HFA conditions. This points to a series of weaknesses and failings in the current health system.
The strongest messages are:
- Mental Health support alongside the diagnosis of AS or HFA is of limited use unless there is also an understanding in the MH service of autism. Knowing how autism impacts on an individual’s experiences, their communication abilities and their need for predictability would make MH support more enabling and safe for the patients and families
- Support strategies offered by MH services were unsuitable as they were mostly group therapy or talking therapy such as CBT, and these adults were not capable of expressing their thoughts or their feelings. Parents felt practical skills on a 1-2-1 basis would have been more supportive
- These adults fall through the gap between services, and there is a need for a more joined-up approach so that adults with AS or HFA have a fairer access to service provision. Because people with AS or HFA do not have learning difficulties, they do not fit the criteria of the learning disability services or the criteria of the MH services and may not receive be eligible for support from the autism services because of their mental health problems
- The high turnover in staff and number of assessments caused anxiety and stress
In conclusion the thesis found that misdiagnosis, limited or inadequate autism training in health professionals, restrictive intake criteria, the lack of an autism-specific mental health service, and poor (or even no) coordination and communication between the health services have all contributed, in the eyes of the parents, not simply to the unmet needs of the adults with AS or HFA but also to an increased burden among the family members
All data has been abridged from a thematic review conducted between October to December 2017, cataloging the experience of five parents living with their offspring in North Somerset and three in Bath.