Listening to Children and Young People

Part 1 of 3: Backward Services are not working for children with autism.

Why are children with autism and their families increasingly fearful of engaging with the very services that have been created to serve them? Services are increasingly dysfunctional and failing to give support or understanding to children with autism. Children with autism are being presented as ‘problematic’ to mask poor services. Ill-equipped professionals blame children rather than acknowledge service failings. We know these services have had billions of pounds cut from their budgets for over a decade. What is unforgivable is that managers and politicians have generated a myth that these cuts would not have a negative impact upon the service to children. This is clearly not correct.

Living can be a struggle when you are a child seen as different and having to manage being the ‘round peg in a square school’. It requires guts and resilience to cope with ordinary living in such circumstances.

Some children with autism may have a ‘meltdown’ or adverse sensory reaction; these can be triggered by inappropriate lighting, sounds, temperature, smells or tensions in school when appropriate support is not available. Such experiences are very difficult for children with autism to manage, but it is made much worse when the event is ‘catastrophised’ by the professionals in charge. This reaction can lead to a chain of events resulting in unlawful exclusions and for some children, removal into closed systems where they ‘disappear’.

Families, understandably, are fearful of such a possibility so may not seek advice or support from services, preferring to keep their children off ‘the professional radar’.

This is such a regressive situation which undermines the progress made, over many years, in our understanding of autism and the significant contributions made by people living with autism to their schools, communities and society in general.

Statutory services are losing integrity. It is also disturbing that allied services, including charities, academics and advocates are suspected of colluding or standing by as children with autism are further devalued and put at risk of disappearing into closed systems.

This is what happened to Philip (not his real name). After several assessments from various professionals, Philip was directed to different special schools; he was eventually diagnosed with autism. It became clear to his parents that ‘the schools did nothing to educate Philip’. When he was 10 years old and after a major struggle with schooling authorities, the family researched and critically questioned another ‘specialist’ school before securing funding for Philip to attend. Philip ‘made great progress’, particularly in relation to physical abilities and developed greater independence. Philip is non-verbal and his parents explored different ways of supporting his communication, they believed that Philip, with the right support, could express his thoughts. They discovered an approach where Philip was able to spell meaningful words on a keyboard and express his thinking in a way that was understood by others. This was a transformation for Philip and his family. However, this change was not acknowledged by the professionals. It was frustrating to find they were unwilling to build on Philip’s new skills and his ability to communicate. They were not prepared to listen to him or his family.

Philip’s parents had more struggles to secure funding to support his independent living; they did manage to get some, which had to be managed by a charity, allocated by the local authority. During this period Philip’s family organised support for him to develop a healthy lifestyle with a good diet and plenty of rigorous exercise, where he could also develop his communication.

Philip was now living in his own rented accommodation with support from personal assistants. More importantly for Philip he was regularly attending classes at university, an opportunity to study which Philip had wanted for so long. He was free to be a member of his own community, which is a basic human right for every disabled person.

Philip and his family still had issues to manage such as staffing issues, and managing budgets, not helped by inadequate funding from the local authority. He was however able to develop friendships where his communication was actively valued and used; this progressed for almost ten years.

Part 2 of 3: It’s a shock for parents when some professionals deliberately lie to them.

When Philip was in his mid twenties, the local authority, without any consultation with Philip or his parents, handed over Philip’s funding to be managed by another agency. The agency was inexperienced and unable to support Philip’s independent living; it lasted a short time. To bring an end to managing Philip’s independent living, Philip was deliberately made homeless when the agency decided not to renew the rental agreement on his home.

The professionals from the local authority persuaded Philip and his parents, that a ‘short three month assessment’ in a residential ‘care facility’, was the most appropriate way forward, when detailed planning could be completed to arrange Philip’s future and independent lifestyle once again.

Within a few days of being institutionalised Philip, who had been drug free since birth, was given antipsychotic medication; his parents immediately protested and met with the clinical psychologist in charge, but their voice was ignored.

A few days later, Philip was admitted as an emergency patient to the local hospital, having had multiple seizures. Philip had never experienced a seizure prior to his admission to the institution and the medication he was forced to take. After his stay in hospital he was returned to the ‘care facility’. The institution remained silent and refused to make any comment about Philip’s hospitalisation.

The medication continued and Philip’s communication was stopped. At the end of the 3 month ‘assessment’ a case conference was convened. Philip was not allowed to attend: his parents were told by the psychiatrist and other members of the team ‘it would be too distressing for Philip’.

The parents refused to attend the case conference without Philip’s participation. It was again made clear Philip could not attend. The family refused to leave without seeing Phillip. The psychiatrist called the police to have the family removed from the premises.

The following day Philip was discharged to another private residential facility hastily, arranged by the local authority, 40 miles from his family’s home.

Part 3 of 3: ‘Closed Settings’ are a fertile ground for the abuse, in silence, of children with autism.

For the first few months Philip was treated well in the new centre by support staff, he was medication-free and his healthy diet was adhered to. He had plenty of exercise and was relieved to be away from the other ‘care facility’. Philip’s parents visited every weekend and Philip was relaxed and beginning to regain his self-confidence.

However when Philip’s communication device was broken the manager refused to replace it – having staff communicate with Philip was not part of the culture of the institution.

Philip was returned to anti -psychotic medication prescribed by the psychiatrist. Yet again, Philip had seizures and was admitted to another general hospital as an emergency patient.

Again the silence of the management continued and no formal acknowledgement or explanation was given to the parents or Philip. This was now a ‘private closed institution’, who were not open to questioning from families or friends.

The family made formal complaints to the statutory service, to the governors of the centre, to local and national politicians and the ombudsman service. These complaints and calls for help resulted incredibly slowly in neutral responses, thus supporting Philip’s continued incarceration in the closed centre. The senior professionals maintained a powerful silence with little or no meaningful engagement with Philip or his family.

Philip’s current independent lifestyle – a bright future?

It was years of ongoing advocacy by his family and friends, with a commitment to hearing Philip’s voice for independent living, that maintained the motivation for his release. Eventually, two new professionals in the statutory service, who were honest and prepared to listen to Philip – and more importantly willing to challenge the decisions of their colleagues – worked with the family to enable Philip to return to independent living.

Philip currently lives in rented accommodation with his own support staff, takes holidays and visits his friends in Europe. Philip also advocates at international conferences for independent living for all disabled people who require the funding to do so.

Philip has left behind the horrors of a closed setting, where he was systematically abused by the professionals in charge. His family have to remain continually vigilant to ensure he always has independent living. It is clear what happened to Philip five years ago is happening today up and down the UK and it could happen to any disabled person who requires support and funding to live an independent lifestyle.

Why is such a horrible prospect still happening?

Because:

• We fail to listen to and respect disabled people.
• We fail to provide free legal and independent representation to disabled people when they have been subject to an injustice.
• We fail to provide secure and adequate funding, for disabled people to live a full life in their local community.
• We fail to uphold the UN convention on the Rights of Persons with Disabilities.
• Whilst places exist in closed settings, some professionals will put disabled people like Philip in them.

It is important however, to know what is in Philip’s life now that will militate against a repeat of the injustice he has already endured:

• His parents and his family
• His many close friendships
• People who work for and with Philip who have a belief in him
• Professionals who are prepared to listen and listen, then listen again to hear Philip and critically challenge their own services when necessary.

Philip, alongside many other disabled people and their allies, continues this vital campaign to uphold the human rights of all disabled people at a national and international level.

We must resist and expose, through our friendships and networks, the services that fail in their obligations to disabled people. We must speak out against professionals who allow themselves to be seen as ‘experts’ on disabled people, which is as ridiculous as being an expert on people who wear blue jumpers.

A way forward

Many families who have a child with autism can feel very alone and isolated, thinking that they are the only family struggling. They may feel the only choice they have is to turn to professionals for help. Families can benefit by forming groups and being in an environment where they feel safe to share thoughts and experiences with other families where they increase their power to speak out and work together to bring about the necessary changes.

Joe Whittaker

February 2019