Parenting Pointers - Community Support for Autism

 I recently had a chance to interview Mental health expert Noel McDermott to learn more about supporting families.

 

Can you share a little bit about institutional care for autistic people and how it affects families? In this context institutional means a lack of personalised approach to care. The use of institutions in ASD care is often due to a breakdown in support services in the community setting and a more medicalised and controlling form of care is instituted. The autistic person will face significantly higher use of medication designed to control behaviour and significantly less adaptation of the care to meet their individual needs. The institution is usually focused more on compliance and control and has significantly more legal powers to impose treatment on individuals with or without their or the family’s consent. Families can face significant disempowerment in the face of institutional responses due to a number of processes. The professionals have the power in the relationship and take over. Institutions are based upon hierarchies and professional qualifications and experience. Families can often be viewed as a problem to be managed and especially in the context of mental health act practitioners there is more often than not conflict. Mental health act-based professionals often see themselves at odds with family and also often other care professionals. Families can experience being cut out of the care of loved ones and having their views and opinions ignored or even directly undermined. 

 

Where can families go to find support? A good place to start is The National Autistic Society, https://www.autism.org.uk/ for general support issues. The nature of autism care is that it is a complex condition across a spectrum and the challenges faced by any one individual or family can vary enormously. In the use of the Mental Health Act you may need legal help to understand your rights as a family member and in particular if you are designated the 'nearest relative’ which is a legal term meaning you will have to be consulted on care decisions, info can be found here https://www.mind.org.uk/information-support/legal-rights/nearest-relative/nearest-relatives-rights/#:~:text=The%20nearest%20relative%20is%20a,This%20can%20sometimes%20be%20changed. Talking to other families with similar experiences can be enormously helpful as can mental health support services. Families often forget their own needs and life goals as the ASD person’s needs can come to dominate. If there are non-ASD children, ensure they are not lost with the focus on the ASD child’s needs. Use the metaphor of putting the oxygen mask on yourself first. 

 

How can community members work to make communities more inclusive, especially for autistic people?

There are many ways in which people can help individually in reducing the isolation felt by families with disabled children and most revolve around having an open mind and reaching out to chat. Don’t be afraid and also don’t stop your children from asking the ‘embarrassing’ questions they ask each other. There are some very welcome moves by large supermarket chains                to have ‘quiet hours’ for shopping where sensory stimulation is reduced and in fact many people not on the spectrum welcome this also https://www.autism-unlimited.org/blog/supermarket-quiet-hours/. Cinemas are also offering this approach which is again welcomed by many seeking less sensory intense lifestyles https://dimensions-uk.org/get-involved/campaigns/autism-friendly-cinema-screenings/. Reducing sensory input is actually of benefit to all of us and a very quick win for inclusion and support. Employers can help enormously with adaptations and HR training is crucial. 

Mental health expert Noel McDermott is a psychotherapist and dramatherapist with over 30 years’ work within the health, social care, education, and criminal justice fields. His company Mental Health Works provides unique mental health services for the public and other organisations. Mental Health Works offers in situ health care and will source, identify and co-ordinate personalised teams to meet your needs – https://www.mentalhealthworks.net/