ND Treatment & Post-Diagnostic Support

These are fast-acting medications which increase dopamine and norepinephrine levels in the brain. They are fast acting and the effects can be felt within an hour after taking them. Stimulants are a controlled substance.
Methylphenidate for ADHD – Medicines For Children
Lisdexamfetamine for ADHD – Medicines For Children

These take longer to start working, your child may need to take them for longer to feel the effects. They must be taken every day.
Atomoxetine for ADHD – Medicines For Children
Guanfacine for ADHD – Medicines For Children

What will happen to young people who are currently taking ADHD medication but have not yet transferred to adult services?

We will prioritise an appointment for you with one of our team. This appointment will focus on medication review and transition planning to the appropriate adult ADHD service.

What will happen if I do not attend my appointments?

Due to the demand on our service, we will be unable to offer another appointment. You will be discharged from our service back to the care of your GP.

What happens if I am approaching my 18^th birthday and have not yet started medication?

Young people aged 17 years and 6 months, or older, who have not started medication will not be commenced on medication through our service. We will refer those who are already on our waiting list to the appropriate adult ADHD service if they opt in.

Why has this change been made?

Alder Hey are commissioned to provide this service to children and young people up to the age of 18. We are really proud to have been able to support young people up until this age. As a provider service, we are required to work within the scope of the services that are commissioned for our population and to ensure that prescribing is undertaken within the most appropriate clinical setting.

What will happen with the prescribing of my ADHD medication?

To support continuity of treatment and allow time for ongoing arrangements to be established with your adult provider, we will ensure you have the option to request a 3 month medication prescription at the point of discharge. This supply is intended to provide sufficient time for prescribing responsibilities to transfer to your adult ADHD service.

I am 17 years and 6 months old, why am I being affected?

Due to our current waiting times, we will be unable to commence your medication before your 18^th birthday. We are continuing to work closely with your local adult ADHD provider to support you with your transition journey.

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

Referrals

If you would like to refer your child for a PDA assessment, please e-mail [email protected]