Autism in the Care System

Alice (mother of an autistic looked after child) describes the challenge of supporting a son who rejects human contact in the current care system.

Author: Alice (mother of autistic looked after child)

It is almost a year since our 17-year-old son with Asperger Syndrome signed himself into Care. He began running away from home at 16 for reasons he could not explain, and we had arranged for many fresh starts for him living with family members on both sides of his family in an attempt to keep him safe.

Each fresh start culminated in a crisis when he felt a compulsion to leave and no one around him knew why or how to help. CAMHS advice when available made no difference. The day he entered the Care system was the first day he appeared on our borough’s Children’s Department’s radar after yet another crisis. By then he had run out of family members he would stay with and had been under CAMHS care for six months.

When I managed to speak to his CAMHS consultant later that day, he explained that within Care, there would be a focus on a co-ordinated package of health and social care support for our son, something he clearly needed.

I cannot describe the anguish of parting with our child in this way – knowing his largely hidden vulnerabilities and trusting the Care system to understand and support him. He on the other hand was delighted and when given the choice whether to ‘share’ information with his parents or not, chose not to. Within weeks he had cut ties with all his family and refused to take birthday cards, presents or visits. He had cast himself adrift without any links to his past.

How many autistic kids/young people are in Care? No-one really knows because health checks for physical disabilities for children in Care are so poor. Even with these limited health checks, official figures tell us that more than 60% of children in Care have some form of Special Educational Needs, often a neurodisability such as ASD or ADHD.

A year later, where is our son now? He being supported by Social Care living in a semi-independent unit out of borough. We understand from the very little we are told that he lives the majority of his life in his bedroom and will not allow anyone into it. He has not met a mental health professional since entering Care and has not reconnected with any of his family. He has had three successive social workers with significant input from two others. We have never been given any details of the autism training of any of the people who support him and there is no requirement that they have any experience or training in supporting autistic young people like him. No-one provides independent oversight of his Care package. No team within the Local Authority believes he meets their criteria for Care provision post 21.

He is lost to us, but safe and this is our consolation. He is still young and he is free – so many other autistic young adults in Care, particularly boys with ‘conduct disorders’ and ‘emotional difficulties’ are locked up either in Young Offenders Institutions or Mental Health Units. I can only imagine what is happening to autistic girls in the Care system given the extreme naivite that autism brings and the inability of the Care system to get to grips with what it means to be autistic and how best to support autistic kids in Care. The last time I saw my son’s CAMHS consultant at the end of a social care meeting he was visibly upset and crossed the room to apologise.

I am a different person today – much wiser and tougher. I now fight to raise awareness of the needs of children in Care with physical unseen disabilities in a system designed to rescue children from abuse and neglect and ‘make them’ better. Children in Care that have mild intellectual disabilities, Autism, ADHD, speech and language and similar neurodisabilities may never have these identified or meaningfully addressed. I believe the proposed Amendment to the Children and Social Work Bill has the power to be transformational for children and young people like them because it identifies Children with these disabilities as a significant group within care and sets out a framework for identification, training and support but it will not go through without a groundswell of public support.

The publisher is the Centre for Welfare Reform.

Autism in the Care System © Alice 2016.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.

Story | 04.08.16

intellectual disabilities, social care, Story