Is there too much gate-keeping for autism assessments?

I have heard, one time too many, that a child won’t be referred by a GP for an autism assessment unless school staff ‘agree’ or ‘have concerns’.  Teams that do this and professionals that partake are not, it seems, following their own professional, evidence-based guidance.

A diagnosis of autism is carried out by a multidisciplinary healthcare team.  They have NICE guidance to follow which states the following, firstly about making the referral.  Note there is no reference to ensuring school share the concerns of the parents:

1.2 Recognising children and young people with possible autism

1.2.1  Consider the possibility of autism if there are concerns about development or behaviour, but be aware that there may be other explanations for individual signs and symptoms.

1.2.2  Always take parents’ or carers’ concerns and, if appropriate, the child’s or young person’s concerns, about behaviour or development seriously, even if these are not shared by others.

1.2.3  When considering the possibility of autism and whether to refer a child or young person to the autism team, be critical about your professional competence and seek advice from a colleague if in doubt about the next step.

1.2.4  To help identify the signs and symptoms of possible autism, use tables 1–3 (see appendix C). Do not rule out autism if the exact features described in the tables are not evident; they should be used for guidance, but do not include all possible manifestations of autism.

Point 1.2.5  states that when considering the possibility of autism, the referee should be aware that (among other things):

• signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals
• when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment
• autism may be missed in children or young people with an intellectual disability autism may be missed in children or young people who are verbally able autism may be under-diagnosed in girls

Secondly, after referral, considerations that should be made by a specialist from the autism team as to whether a full assessment should be carried out:

1.4.4  When deciding whether to carry out an autism diagnostic assessment, take account of the following(…):

• the severity and duration of the signs and/or symptoms
• the extent to which the signs and/or symptoms are present across different settings (for example, home and school)
• the impact of the signs and/or symptoms on the child or young person and on their family or carer
• the level of parental or carer concern, and if appropriate the concerns of the child or young person

• factors associated with an increased prevalence of autism (e.g. a sibling with autism)

• the likelihood of an alternative diagnosis.

Moreover, NICE continues to advise: If there is uncertainty about whether an autism diagnostic assessment is needed after information has been gathered, offer a consultation to gather information directly from the child or young person and their family or carers.  (point 1.4.6)

With regard to the use of information from in schools or nurseries, NICE advises that more research on the routine collection additional information from educational settings is required as “the degree to which information from teachers and schools helps in accurate diagnosis has not been well tested” (page 32).

In summary, then, information from parents and carers is paramount, the value of information from school staff is yet to be determined and a consultation with the family should be held if there is uncertainty about the need for an assessment.  

It seems to me, that where clinical teams depend on the agreement from school that the child may have neurodevelopmental differences worthy of a full assessment they are not following NICE guidance.

 

Forums all over the country are littered with examples of examples of parents experiences of teachers apparently not having the experience, training or desire to detect neurodevelopmental differences – especially in children that don’t cause problems in schools.  So to make school staff gate-keepers is not only practice that goes against guidance, it is potentially putting children at risk of delayed diagnoses and unnecessary harm.

On our case, staff from three schools were convinced that “Peter is fine/functions normally” despite endless reports and meetings from many professionals to explain that he was different:

• They were sure when the school nurse referred him for anxiety issues at age 5.
• They were sure when the clinical psychologist explained her findings from 3 terms of assessments.
• They were sure when he was diagnosed – even when the process included a second clinical psychologist assessment as well as the full MDT.
• They were so sure that when Peter had been assessed by two Tier 4 CAMHS (inpatient psychiatric) teams that they wrote to Children’s (Social) Services to tell them all about it.
• They were sure when he was an inpatient in one of these units that records show that they reported to social services “School think Peter is fine and mum is fabricating”  (from 150 miles away??? really????)

Peter had needed them to understand, to believe him and to work with the clinical teams that did ‘get it’.  They weren’t ‘seeing it’ where they?  Even when it was spelt out.  Even when there is plenty of literature about masking/blending in/camouflaging in autism.

NICE continues to advise that clinicians should be aware that:

• when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment
• autism may be under-diagnosed in girls

• autism may be missed in children or young people who are verbally able

 

… and that autism shouldn’t be ruled out because of

• good eye contact, smiling and showing affection to family members
• reported pretend play or normal language milestones
• difficulties appearing to resolve after a needs-based intervention (such as a supportive structured learning environment)

 

What training do the teachers have to notice subtle and communication difficulties?  Peter’s early year’s assessment marked him as having exceptional skills in these areas despite the fact that they had been alerted to a likely social communication difficulty.  What training do they have to understand ‘imagination’ the many manifestations… to properly be aware of their own assumptions instead of observations?  I sometimes wonder if misconceptions about autism held by teachers are similar to those held by the general public, and whether it is fair to expect them to know more without additional training or specialist experience.

In addition, it seems to me that teachers are under considerable pressure and that identifying issues within the children in their class/school may simply add to that pressure.  The systems are rife with perverse incentives that obstruct the goal of early diagnosis which we know will lead to better outcomes for children.

 

If your area subscribes to a system that is dependent on using schools to gate-keep referrals – challenge it.

More information on related topics below:

NICE guidance on this in full

How to determine if the professional is acting as such…

More thoughts on how best to use the opinions of teachers on SEND

More on masking and blending in

Getting your GP to help

 

 

 

 

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