Autism spectrum disorder (ASD)

Children with ASD can find the world a confusing place and may have high levels of anxiety, despite their intelligence. ASD may impact on other aspects of behaviour too for example finding it hard to be flexible. Some children with ASD may have difficulties with sensory processing.  These children may avoid certain sensory experiences (noise, smell, touch etc.) or they may seek out these sensory experiences.

ASD can affect anyone, no matter what their ability or background. More boys than girls are affected, a ratio of 4:1. Although it is more recognised in boys there is growing evidence that it is common in girls as well, they tend to present differently and may ‘mask’ their presentation.  After 50 years of research, there is still no agreed explanation for ASD, but it is unlikely there is one single cause for it.  There is no link between immunisations and autism, despite intensive research into this area.

Referrals

Please find below the link to our newly launched ASD online referral platform. This will now be the quickest and most effective method of referral for ASD, making the referring and tracking progress of referrals easier. Please also find guides below for using the online platform. If you are experiencing any significant problems with the online referral platform, please revert to using the paper referral form as normal. 

Online referrals

The paper referral forms can still be used in the event of a system error on the online referral platform. If you are experiencing any significant errors, please use the below link to access the paper form. This referral form can be submitted electronically by saving it into a PDF format and emailing it over to our Booking & Scheduling team on [email protected] . Further guidance is attached to the form itself.

Download the ASD Referral Form (2MB)

Pathological Demand Avoidance (PDA) Statement

The following position statement has been co-produced between Alder Hey Children’s 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.

More information and support for schools visit the PDA Society website.

Private diagnosis

The process for diagnosing children with autism is purely a clinical one. It involves getting a detailed history from families and other professional bodies e.g. school (to gain information about your child from more than one setting) and direct observation and clinical assessment of the child This information is then interpreted taking into account the individual child’s presentation and its impact on functioning in a social setting. An experienced multidisciplinary team then conclude the outcome using internationally recognised diagnostic criteria. If we are presented with a diagnosis for a child that was arrived at by health professionals who are not employed by Alder Hey the following will apply:

The Alder Hey ASD Diagnostic Pathway Team can accept a diagnosis (with mention
of who completed the diagnosis) of a child presenting with an ASD diagnosis from
any other provider outside of Alder Hey including private provision and out of the
Alder hey catchment area. It will however be clear on any communication sent from
the trust that the assessment has not been concluded by the Alder Hey team and the team cannot take any responsibility for the information or conclusion of such an
assessment.
The ASD Diagnostic Pathway team will not routinely offer re-assessment of children
presenting with a diagnosis of ASD by a different provider and as such a referral will
not be accepted by the team unless it is clearly stated why this is required. If a
referral is accepted then child will join the waiting list as a new referral. Any
information available from previous assessments may be used towards the
assessments if available and the triage team will decide and agree next steps.
If a child is already on the Alder Hey ASD Diagnostic Pathway and parents choose to
proceed with a private assessment the child will be discharged from the pathway. A
re-referral will only be accepted if there is clear indication as to why this is required.
If a family move to the area from another country with a child diagnosed with ASD in that country, the clinician who receives the initial referral will review the information they have received and make a decision as to whether the child needs to be referred to the ASD Diagnostic Pathway. If Indicated then the clinician will refer the child to the pathway and this referral will be treated as a new referral. Should the clinician decide not to refer to the pathway then point 1 as described above will be applied.

Post Diagnosis
Unless medically indicated, ASD Diagnostic Pathway Team do not organise follow up for children with an ASD diagnosis. However, should there be a separate medical indication where there is a clinical need for follow up ( for example an associated difficulty) this will be arranged/organised so that the child will be seen by one of our developmental paediatricians in a general Neurodevelopmental clinic.

It is the responsibility of the school the child is attending and local authority/local council area the child /family reside in to use the outcome and recommendations of any assessments by any organisation or provider to support the child as required.
Support for children with an ASD diagnosis is available via the Local Offer. This is an information service which advises you about what services are available for your area and can be accessed via your local council web sites.

Resources

PDA Society Autism.org Sefton Parent Carer Forum Liverpool parents and carers Liverpool CAHMS SEND local offer Sefton.gov Disabilities and SEN

Support services

In Sefton there is also a designated team who help to provide post diagnostic support for children and young people from 0-19 years who have a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD).

View and download the ASD information booklet below:

Autism_Spectrum_Disorder_ASD_Advisory_Session_Information_Booklet_PIAG_223 (258kB pdf)

Assessment process

We are now recommencing face-to-face appointments, but only for those assessments that cannot be carried out virtually. Alder Hey ensures a thorough checklist and assessment process is in place to identify which patients these appointments are suitable for.