I was a speaker at a seminar on “Autism, Women & BAME (Black, Asian & Minority Ethnic) Community” at Birkbeck University last week, organised by A2ND VOICE in association with NABSS.
Speakers from different boroughs, communities and cultures came together to share their experience as parents/carers of those on the autistic spectrum. As well as sharing my story about my 7-year battle to meet my son’s special educational needs, I heard other parents’ distressing stories about their fight to meet their child’s needs, especially those involving young adults on the autistic spectrum who have been let down by our care system – instead of being provided with effective support/therapies, they have been misdiagnosed/ mistreated, ending up:
• In hospital/residential institutions, prescribed with a toxic cocktail of drugs to control their
mood/behaviour (often against their parents’ wishes), ending up unresponsive/mute;
• In the care of social services (sectioned under the Mental Health Act, removed from the family home …);
• Detained by the police (ending up in custody/a prison cell).
By the end of the seminar, two things became clear to me:
1. Despite our different experiences, we all had one thing in common – having to go through a long, costly battle to ensure our child’s needs are met; fighting to get help for our undiagnosed, misdiagnosed, unsupported child/young adult; and being patronised, humiliated or criticised about our parenting skills along the way.
2. After my battle to get educators to meet my Asperger son’s needs, I was hoping it would be smooth sailing from now on. However, it seems there is a huge gap in services for young adults on the autistic spectrum; as one parent said: “Once they leave school, there is nothing out there for them, no support at all”. I am really concerned about what the future holds for my son and for other young adults with autism/Asperger’s.
People on the autistic spectrum are vulnerable – if their needs are not met, they are at high risk of isolation, exclusion and mental health problems (depression, hospitalisation, imprisonment, suicide).
Research by the National Autistic Society found that nearly two thirds of adults with autism do not have enough support to meet their needs and one in three are experiencing severe mental health problems due to lack of support (Rosenblatt, M: I Exist: the message from adults with autism in England. London, NAS. 2008).
Autism costs the UK at least £32bn a year in terms of treatment, lost earnings, and care and support for children and adults with ASD (Journal of the American Medical Association Paediatrics). The figures show a clear need for more effective interventions to treat autism, ideally in early life, to make the best use of scarce resources.
The evidence is strong and clear, but progress is slow.
Parents need to be heard and seminars like these help to raise awareness of the challenges facing our families. Thank you Venessa at A2ND VOICE for organising this seminar and for giving us ‘a voice’.