Autism spectrum disorder (ASD)

Will Healios be able to complete a proper assessment over a video call?

You and your child will be able to see and interact with your clinician via the video call just like you would in a face-to-face setting. At Alder Hey we now also routinely use video calls for either part or all of children’s ASD assessment and are confident that a video call can provide a good assessment in most cases. Lots of young people have told us they were more comfortable to engage via video call as they were able to complete their assessments in a familiar environment rather than travelling to a clinic.

What if I choose not to proceed with Healios? / What if Healios cannot complete my child’s assessment?

Healios will pass the referral back to the ASD Pathway at Alder Hey. The team will review and decide how best to proceed with the assessment. We book all appointments in order of when the original referral was received so your child will keep their place on the waiting list and further appointments will be offered in due course.

The following position statement has been co-produced between Alder Hey
Childrens NHS Foundation Trust, Education (Liverpool and Sefton) and Parent Carer
Forums (Liverpool & Sefton) to ensure a shared understanding of Pathological
Demand Avoidance (PDA) and how best to support children and young people with
this profile and their families. We work together to ensure every parent/carer in
Liverpool and Sefton feels that their voice, their views and their experiences matter
and contribute towards developing and improving services to positively impact upon the lives of children and young people with SEND.

What is Pathological Demand Avoidance (PDA)?

Demand avoidance is a common response to anxiety in children with and without
Autism Spectrum conditions. In contrast, Pathological demand avoidance (PDA) is
not common and is characterised by a continued and pervasive extreme resistance
to everyday demands through strategies of social manipulation that originate from an anxiety-driven need to be in control.

The PDA profile of Autism can sometimes be difficult to identify and it’s not
uncommon for it to be missed, misunderstood or misdiagnosed, which may lead to
poor outcomes for children and young people.

PDA was first described as a separate clinical entity by Elizabeth Newson and
colleagues in Nottingham and almost all published research regarding PDA comes
from this group. There is ongoing debate but most professionals believe that children described as having PDA fall within the autistic spectrum (ASD). Children and young people with ASD and a demand avoidant profile may respond to different strategies particularly in educational settings.

PDA does not appear as a separate diagnostic condition in nationally and
internationally recognised diagnostic manuals such as DSM-5 or ICD-10. As there
are no formal ‘diagnostic criteria’ for identifying a PDA profile of autism, Alder Hey
does not make this a separate diagnosis. However, for a child or young person who
has been assessed as being on the autism spectrum and presents with a demand
avoidant profile, this will be recognised and described within the child or young
person’s assessment report as “ASD with a PDA profile”.

Alder Hey will only consider recognising PDA as a profile within a diagnosis of ASD,
therefore the assessments and information gathered as part of the diagnostic
process must result in a diagnosis of ASD before PDA can be considered and
recognised. Where there is no diagnosis of ASD, PDA will not be considered.

However, if PDA strategies are found to be helpful for the child or young person then we would suggest they are employed by parents/carers/school even when a
diagnosis has not been reached, as ultimately it is the interventions and support
based on the needs of the child or young person that are essential rather than
focusing on further assessments and diagnosis.

What might a PDA profile look like?

Children and young people with a PDA profile may use a number of strategies in
response to demands, including delay tactics, distraction, shouting, falling to the
ground, saying body parts don’t work, negotiating, escape, manipulation, aggressive or dangerous behaviour.

Behaviours that may be typical (but are not always) seen are:

• Resistance to / avoidance of everyday demands e.g. getting up, getting dressed, eating a meal or washing.
• Using ‘social’ strategies as part of the avoidance e.g. not just saying no, withdrawing, shutting down or running away, distraction, making excuses, physical incapacitation, withdrawing into fantasy, procrastination, controlling, reducing meaningful conversation or masking.
• Sociable, yet lacking depth of understanding
• Excessive mood swings e.g. difficulties with emotional regulation, rapid mood swings, impulsiveness and unpredictability.
• Comfortable in fantasy/imaginative play e.g. this can sometimes be to an extreme extent with other personas being adopted for a prolonged period of time.
• Displays of obsessive behaviour, often focused on other people

Some of these behaviours are a form of ‘panic attack’, often referred to as ‘fight,
flight or freeze’ responses.

How do we support children and young people with PDA?

Children and young people with this profile do not generally respond to the traditional approaches recommended for autism and also tend not to respond to conventional parenting, teaching or support approaches.

Often the child or young person responds better to a more flexible and non-confrontational set of personalised approaches. The most important thing is to gain a strong understanding of the presentation of the individual and to use approaches
which are going to be most effective for them.

Schools can gain further information and support from https://www.pdasociety.org.uk/working-with-pda-menu/info-for-education-professionals/

Resources

• https://www.pdasociety.org.uk/
• https://www.autism.org.uk/
• 
  http://www.seftonpcf.org/
• 
  www.livpac.org.uk
• https://www.theisabellatrust.org/
• 
  https://www.liverpoolcamhs.com/
  
• Liverpool SEND Local Offer
• Sefton SEND Local Offer
• Education support
• 
  Sefton CVS