The NAS Lobby

When the National Autistic Society turned away families who were in crisis we decided to do something about it.

Isabelle Garnett

How can the NAS help autistic children and adults at risk of crisis & inpatient admission?

A group of families and I have been lobbying the National Autistic Society (NAS) to establish much-needed case work support for children & adults in inpatient hospitals for almost three years now. As families, we turned to the NAS when our loved ones were at crisis point and at risk of being sectioned, but were turned away and had nowhere to turn to for autism-informed advice and support. Since then, through contact with other individuals and families in similar situations, we know that this continues to be the case.

On 26th April, we families met with the NAS to discuss a new casework support role (similar to the case work support that Mencap and the Challenging Behaviour Foundation provide to families of children, young people and adults with learning disabilities). I thought others might be interested to read what we had to say, and also contribute their views (please see survey at the end).

Why is there a need for case work support?

We told the NAS that this role was urgently needed as the number of children with autism being admitted to inpatient units has doubled since 2015, the biggest group of these being girls with autism, without learning disability The vast majority autistic people are admitted to ATUs when they have reached crisis point because of a lack of adequate provision across health, education and social care – not mental health illness per se. In this sense, inpatient units are the last stop on the SEND Crisis Line.

The role we discussed with the NAS was about supporting and advising individuals and their families in avoiding crisis in the first place. And, should a child or an adult be admitted, it would be about getting them out of inpatient units and securing the right care in the community.

Important factors to consider

We stressed that it is vital for case work support role to be across education, health and social care. It is vitally important for the following factors to be considered:

The Pathway to inpatient units
starts at diagnosis (please see flow chart below). This is especially true for girls, as many are not diagnosed until they are in crisis in inpatient units.

Pathway to inpatient care

Key factors in education are:

  • School refusal
  • Exclusion / Off rolling
  • Parents pressured to home educate
  • Parents pressured to ask Clinicians for medication or their child will be permanently excluded

Key factors in social care include:

  • Lack of respite care
  • Cuts to a person’s social care support
  • Lack of fast intervention – held on duty for too long
  • Not fitting in to one team if the person doesn’t have an identified learning disability

Key factors in health include:

  • Anxiety must not be underestimated
  • Clinicians inadequate autism understanding leads to misdiagnosis and /or diagnostic overshadowing
  • Missed diagnosis of girls
  • Over-medication medication
  • Medical model approaches
  • Lack of autism-adequate CAMHS & crisis support

Particularly at risk autistic profiles are:

  • Girls with autism (particularly anxiety-related eating disorders, self-harm – also affects males)
  • Those with a PDA profile of need

Predicable trigger points include:

  • Puberty
  • key stage transitions (especially primary to secondary and CYP to adult services).

The number of autistic CYP under 18 in inpatient units has doubled, and the vast majority of these are girls with autism, without learning disability.

Inpatient mental health hospitals are rarely helpful for autistic people (c.f. Mental Health Code of Practice: Chapter 20, Section 20).

Any case worker must understand how the law (e.g MHA, MCA) applies differently to under 18s.

Nature of the support that needs to be given

Communicating with families on phone /email x hours per day,

Key areas of support:

  • Understanding why autistic people need homes not hospitals and what the alternatives to inpatient admission are or could be
  • Good practice and person-centred approaches
  • Dynamic Risk Registers
  • Community and inpatient CETRs (how to request, how these should be conducted, how emergency protocol meetings are different)
  • Advocacy
  • The law (MHA, MCA, DoLS) and how it applies differently to under 18s.

Research and fact sheet writing

Liaison with other services

Admin (emailing out info)

Recording evidence of what people / their families are experiencing – to inform NAS policy, practice and campaigns

Ongoing training for local branch families (e.g. crisis prevention and management) and branch volunteers (as before, and signposting).

We families hope that this feedback might be helpful and swiftly lead to the casework support that we believe urgently needs to be put in place.

Please share your suggestions and ideas on the support the NAS could give to autistic children and their families at risk of admission to, or in, inpatient units, by completing this very short survey on Survey Monkey [LINK]