The risks of reducing autism assessments

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At a meeting on 11th May, South West London and St George’s NHS Trust proposed that they only assess children for autism if they have another mental health condition that requires treatment.

As a researcher into the experiences of autistic girls, this worries me greatly.

What could be driving their suggestion? And why should it be a concern?

1) To hit targets?
It has been reported that “The effect of reviewing and revising the criteria must be to reduce the number of children and young people who are able to access a full diagnostic assessment from the trust”.

This suggests that the Trust are concerned with decreasing the number of children and young people they see.  This is connected with costs – of trained, available clinicians, for example. The Trust then has a choice over increasing the budget available to assess children, or accepting that waiting list times would increase.  In both cases, the Trust may be missing performance targets: either the costs go up, or the waiting lists and the time spent waiting increase.

In neither case are the rights of the child considered.

It also suggests that the ‘severely’ autistic child with a secondary mental health condition will be easy (for whom?) to identify and refer. This concerns me because it appears to take us back to highly problematic functioning labels, and an understanding of autism that has more to do with learning difficulties and IQ than it does with difficulties with social communication and interaction.

The impact of autism is too often considered from the perspective of the people around the autistic child.  This model relies on assessing a need based on stereotypes and the observation of externalised behaviours resulting from needs not being met. Leaving aside for the moment the issue of whether or not it is acceptable to withhold help until a child is so unable to cope, and is so out of control, that they become at risk of being (for example) formally (or informally) excluded from school, what about those autistic children and young people who internalise their difficulties and anxieties?

We know that many autistic girls (and some autistic boys) tend to internalise their feelings, and that the impact of autism on their daily lives often goes unnoticed and unsupported because it does not impact on teachers or peers; it impacts on them. These differences in personal responses to the challenges of autism mean that many autistic children and young people, many of whom are girls, are already missing out on a diagnosis. To further restrict their access to an understanding of their neurology and the support to which they are entitled, is discrimination.

And we know from previous research that autistic girls are often diagnosed later than boys, often in their teenage years when social difficulties become more apparent, or their twenties – or much, much later, if at all – and we know they are often diagnosed first with a secondary mental health condition. Which brings us full circle. In the long term, if these children’s needs are not met and their identities unacknowledged, we know that they are at risk of developing mental health difficulties.  It is therefore likely that this Trust would see a long-term increase in the numbers of children who are referred for an assessment of autism, and who also have a mental health condition, as a result of this plan.

2) To de-pathologise autism?

Perhaps, though, it is not an attempt to reduce the number of children and young people diagnosed as autistic. Perhaps, instead, it is a desire to reframe autism as a relatively common neurological difference? To move away from it’s classification of autism as a disorder, or disease?

The National Health Service Act 2oo6 Section 1(1) says that the Secretary of State must ‘continue the promotion’ of a NHS that will improve the physical and mental health of people living in England, and improve the ‘prevention, diagnosis and treatment of illness’. If autism was to no longer be considered until the medical model, with a focus on understanding the causes and finding ‘cures’, then why would an autistic person be assessed by the NHS unless they had a mental health issue?  This is surely the Trust in question applying the Act in accordance with the law?

To stop pathologising autism would be a good thing. Many in the adult autistic community (myself included) see autism as part of their identity; an integral part of who are they are, not an embarrassing appendage.  Learning that you are autistic is liberating, for many; the key to understanding and acceptance – for you, and hopefully those around you. Many would argue further that you do not need the NHS to tell you who you are. If you identify as autistic, then surely you do not need the confirmation from a medical professional, who does not know you as well as you know yourself.

However. A child is not likely to come to that point of self-realisation themselves. And if you’re that child’s parents, how do you know that your child is autistic unless you are too? Before a health visitor referred my daughter to a paediatrician shortly before her fifth birthday, writing ‘Asperger’s?’ on her referral form, I knew nothing at all about autism, or any of its names. Like many autistic females my diagnosis was as an adult, and in my case followed that of my daughter.

What do you go through as a parent when you don’t have the key to understanding your child? Guilt, feelings of failure, of helplessness, of nights spent wondering what you are doing wrong; why you can’t cope yet all the other parents on the playground seemingly can. Depression. As a child – unsupported, angry and afraid, isolated and outside, put into situations which are traumatic and confusing and never-ending and none-of-it-makes-any-sense.

So who identifies these children as autistic?

3) There is no need for a formal diagnosis?

A spokesperson for the Trust says that ‘children with suspected autism should be managed by schools and other services, and do not require formal diagnosis of autism’.

This is interesting. Firstly, the Children and Families Act 2014 says that Local Authorities must identify all children and young people resident in their borough who have/may have SEN and/or a disability. So is the Trust pushing responsibility back to LA’s, by saying no formal diagnosis is required for autistic children to be ‘managed’ by schools? In which case, how are they identified?

Schools – teachers – cannot be expected to identify pupils as autistic. They are already over-stretched with frequent changes to the curriculum and methods of assessment, have probably had an hour or two of training on autism in the whole of their careers, and have a class full of 30 individual children, each with their own demands and right to an education.  Most teachers do not have any capacity to do more.

Identification of an individual child’s needs that result from a special need and/or disability should be done for and alongside school staff. Schools typically call in an Educational Psychologist from the Local Authority to do this at the moment, who will then refer to the NHS for assessment if required. However, shrinking LA budgets and staff levels mean that Councils are unlikely to have the capacity to take on additional workloads, or to have sufficient staff with the specialist knowledge to replace the identification process used by the Trust.

And, whilst a diagnosis is not necessary for some support, in school a formal diagnosis of autism may be required for parents to insist on their child’s identified needs being met.  This is particularly the case when teachers gauge the severity of a child’s autism as lower than her parents do. We know from research that a formal diagnosis is not always sufficient in itself to get autistic children the support that they need, as some teachers base those needs on what they see (even though autism is not a ‘look’ but a neurological difference), which is particularly problematic for girls. Asking schools to support girls they think may be autistic will result in many more ‘flying under the radar’.

Finally, I am troubled by the term ‘managed’. What does this mean in practice? It’s use suggests it is more about controlling behaviour than accepting and accommodating neurodiversity. Less happiness; more deficit.

Conclusion

There seem to be some fairly likely outcomes to such a plan:

*It is likely that schools will be unable to identify autistic children whose behaviour does not have a severe impact on teachers and peers.

*More undiagnosed autistic children are likely to remain unidentified.
*More unidentified autistic children are likely to be unsupported, with their needs largely unmet.
*More parents/carers of unidentified autistic children are likely to feel that they are ‘bad’ parents and helpless to support their child.
*The numbers of autistic children developing a secondary health condition is likely to increase.
*Whilst it may save money in the short term, it is likely to have increased long-term costs.
*It is likely to have a potentially massive, negative impact on the daily lives of our autistic children.

Let us hope they reconsider.

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