Diagnostic Pathway for Children

Overview

Pathological Demand Avoidance (PDA) is one of the profiles present in some individuals on the autism spectrum, as such it is usually identified during or following an assessment for an Autism Spectrum Disorder (ASD).

Recognition of PDA as part of the Autism Spectrum is fairly recent and remains a contentious issue among some professionals. But, this has greatly improved during recent years due to the increasing bank of peer reviewed research and the acceptance of the PDA profile, as part of the autism spectrum, by the National Autistic Society combined with increasing awareness and recognition of this profile among parents, and how it accurately describes their child.

During the process of considering an assessment or diagnosing ASD, clinicians will often refer to one of the diagnostic manuals; ICD-10 (published by the World Health Organisation) or DSM5 (produced by the American Psychiatric Society). Different clinicians and local authorities may have guidelines about working within one of these manuals to provide consistency at a local level, but this is not always the case.

Therefore, currently the lack of inclusion of PDA in either of these diagnostic manuals combined with the policies of local areas and the opinions of individual clinicians continues to result in an inconsistent approach, regarding the PDA profile of ASD, across the UK.

However, both recent and forthcoming changes to these diagnostic manuals will mean that the most widely used term for diagnosis by clinicians will be ‘autism spectrum disorder’ (ASD), and additional terms will often be used to describe particular profiles presented by individual children such as ‘ASD with a profile of Asperger’s’ or ‘ASD with a profile of PDA’.

Some clinicians may still continue to be restricted by the policies of their local authority. However, clinicians can use their own clinical judgement to describe an individual child’s presentation of ASD and remain within the guidelines of the diagnostic manuals. The National Autistic Society have produced useful information that describes autism profiles and diagnostic criteria in more detail.

Lost and Confused Signpost
Therefore, for many families, it can be difficult to know what to do for the best, how to proceed forward, what information to share and how to deal with common misconceptions if your local services are not experienced in identifying or are sceptical about the PDA profile of ASD.

The following information should help to guide you through this process and the various options that are available to families.


What is the purpose of a diagnosis?

The purpose of a diagnosis is to help families and others involved with the child to make better sense of the child’s strengths and difficulties. This helps to provide the child, the family and those working with the child a shared and collaborative approach across all settings regarding the correct understanding and the most appropriate interventions.

What are the benefits of a diagnosis?

  • A diagnosis is helpful in highlighting that the child’s difficulties are primarily due to a developmental disorder rather than a result of parenting issues.
  • It can help children with PDA and their families to understand why they experience certain difficulties and what they can do about them.
  • Allows people to access services, support and appropriate advice about strategies.
  • Avoids incorrect assumptions and diagnoses, such as Oppositional Defiance Disorder (ODD), Attention Deficit Hyperactive Disorder (ADHD), Reactive Attachment Disorder (RAD), dyslexia or dyspraxia (although a child might have these as well).
  • Many children will require additional support in school and it is crucial that this support is tailored to their specific needs, which may differ to those that benefit from more typical ASD support. This helps to avoid school exclusion.
  • Informs local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions.

Some families may decide not to seek a diagnosis knowing their child’s strengths and difficulties are enough for them to feel secure that they can achieve the correct support for their child. There are no right or wrong decisions, this is a personal choice for each family to make.


What you can do while you are waiting

The diagnostic pathway is a time consuming process that can take many months or, in some cases, even years. The reasons for which are wide and varied. But, the important point here is for families to understand that there are plenty of positive things that they can do to improve their situation prior to receiving a diagnosis of any type. We have provided some useful suggestions of things that you can do now in the ‘Does my Child have PDA?’ section of our website.


Beginning the diagnostic pathway – collating your evidence
files

Prior to beginning the diagnostic process it is helpful and important to collate your evidence and organise it in an easy to navigate manner.

This can help families to feel more confident when they request a referral for an assessment and provides medical professionals with clear reasons and explanations for you concerns.

Features of ASD

  • First and foremost it is helpful to list the features of ASD that your child presents with. The National Institute of Care and Excellence (NICE) Pathways provide a useful checklist for Identifying possible autism spectrum disorder in under 19s which you can download from their website. Of particular interest may be the following guidance from NICE Pathways.

Signs and Symptoms in Children
Responding to others:
Unusually negative response to the requests of others (demand avoidant behaviour).  NICE Pathways 2017, Identifying possible autism spectrum disorder in under 19s, Point 7, p.g. 7, 9 & 11

Features of PDA

Considering the possibility of autism spectrum disorder
Do not rule out autism because of:
good eye contact, smiling and showing affection to family members
reported pretend play or normal language milestones. NICE Pathways 2017, Identifying possible autism spectrum disorder in under 19s, Point 6, p.g. 5

Further information to provide

  • Provide evidence from someone else who can support your descriptions of your child’s difficulties.  This person could be an extended family member, friend, teacher or an out of school activity leader.
  • Keep a behaviour diary of your child’s difficulties to give an overview of a typical week or month. Note down the difficulties that your child is experiencing, what happened prior to the difficulty e.g. was there a trigger, how you dealt with the situation and what the outcome was.

Diagnostic pathway options

The three main options available for families regarding the diagnostic pathway are:-

1. Local NHS pathway

Some NHS autism diagnostic teams will be experienced in recognising the PDA profile of ASD and will use a suitable descriptor, in a child’s diagnostic report, to explain a child’s profile of ASD in relation to the PDA profile. Other NHS autism diagnostic teams experienced in identifying this profile of ASD may only be willing or able to provide a generic diagnosis of ASD, but will provide a diagnostic report that clearly describes the child’s individual strengths and difficulties, inclusive of demand avoidance and acute levels of anxiety. This should be sufficient to correctly support the child.

Not all NHS autism diagnostic teams will be experienced in recognising the PDA profile of ASD, their expertise may be limited to recognising the traditional profile of ASD. This is when some children may fall through the ASD diagnostic net. Discuss any concerns you may have regarding your local services with your GP.

2. Referal to an NHS specialist or an Independent Diagnostic Centre

Some NHS autism diagnostic teams may be aware of and accepting of the PDA profile of ASD but agree that they do not have the experience or expertise to identify this profile of ASD. You can request onward referal to an NHS specialist within this field. Access to an NHS specialist is based on need via your GP. Or you can request that you are referred to an Independant diagnostic centre.  This may involve your GP submitting an Individual Funding Request to the Clinical Commissioning Group (CCG). It is important to discuss these options with your GP to ensure that you follow the correct local pathway to secure any funding that may be required.

It can sometimes be helpful if your local MP is able to support this request. If the request is refused you can usually appeal this decision or make a complaint, but you would need to seek further information about the process for appeal from your local health authority, as this may vary according to local policies.

3. Private assessments

Some parents decide to proceed with an assessment and diagnosis, first and foremost, via an independent diagnostic centre. Other parents  may choose this options if they have been unable to make progress via the NHS pathway.

Please be aware that local services are not obliged to accept a private diagnosis and may insist upon you having an NHS diagnosis. But, providing the assessment has been conducted in accordance with NICE pathways i.e. multidisciplinary, there should be very few grounds for not accepting the outcomes of a private assessment. If your private assessment is not accepted by your local services it can be helpful to ask the clinician who conducted the assessment to contact the services involved on your behalf. If this doesn’t resolve the issue you could make a complaint to the service concerned, request your local MP supports you with this matter.

The PDA Society would always advise parents to continue with any NHS diagnostic pathway that has been offered to you, even if you decide to simultaneously proceed with a private assessment.

Independent diagnostic centres

The following independent autism diagnostic centres all assess and diagnose ASD with a profile of PDA in accordance with NICE pathways. These services can be commissioned either privately or by your Clinical Commissioning Group if they have approved funding for an assessment. N.B. discuss local funding pathways and process for independant diagnostic centres with your GP.

The Elizabeth Newson Centre (ENC) – Nottingham 
The Lorna Wing Centre (LWC) – Kent 
Help for Psychology – Norwich 
Healthcare 4 Kids – Warwickshire 
​Spectrum North West - Warrington
Axia ASD - Cheshire
The Spectrum Centre – Northern Ireland

Costs can vary between approximately £ 1000.00 – £3500.00, please contact these services directly for further information regarding costs, waiting times and their referral process.

N.B. The PDA Society take considerable care to ensure the quality and experience of the services that we signpost to parents and professionals. However, the PDA Society are not making any recommendations nor is responsible for the quality, experience or the outcomes of assessments performed by independent services.



Requesting an assessment for ASD – NHS pathway

  1. Make an appointment with your GP to share your concerns about the possibility that your child may have ASD.  Submit the information that you have collated to support your concerns and request that your child is referred on to the next stage of the autism assessment pathway, this may vary regionally but may include a referral to a Paediatrician, Child and Mental Health Service (CAMHS) or a Child Development Centre (CDC).
  2. If your referral is refused ask to be provided, in writing, with the reasons why your child did not meet the criteria for the referral to be accepted. Understanding the exact reasons why your referral has been refused can help you to prepare a case for the decision to be reconsidered as detailed at the end of this factsheet.
  3. If your referral is accepted you may need to attend further appointments to help the professionals involved to determine if onward referral to the ASD diagnostic team is appropriate.
  4. It is during this stage of the process that you may face obstacles if your local services are not experienced in the PDA profile of ASD, such as not identifying your child as meeting the criteria for onward referral to the ASD diagnostic team due to his or her atypical profile.
  5. This is when you may need to redirect them to the information that you provided at the start of the process, which explains that this is an atypical presentation for some children on the spectrum and that these features should not rule out the possibility of autism.
  6. This process can be time consuming and may take many months to complete and involve numerous appointments. At the end of which you should be informed if the decision has been taken to refer your child to the ASD diagnostic team.
  7. If your request for a referral to the ASD diagnostic team is refused ask to be provided, in writing, with the reasons why your child did not meet the criteria for onward referral. Understanding the exact reasons why your referral has been refused can help you to prepare a case for the decision to be reconsidered as detailed at the end of this factsheet.

NICE pathways provide further information regarding the recommended pathway for local services to follow for each stage of the assessment and referral pathway, which you can download from their website.

Identifying possible autism spectrum disorder in under 19s
Referral of under 19s with possible autism spectrum disorder


Requesting an assessment for ASD – independent diagnostic centres (private)

  1. If you wish to see a private specialist, you are still advised to get a referral letter from your GP. However, if you see a private specialist without a GP referral, your GP is not obliged to accept the specialist's recommendations.
  2. In addition / or instead of, some independent services will often carry out their own referral process to decide if a full assessment is warranted.
  3. This may involve carrying out their own screening tests combined with viewing the information that you have collated.
  4. Following this an independent diagnostic centre should be able to inform you if it is advisable to proceed with a full assessment or not.

The autism diagnostic assessment team

Once your child has been referred to the ASD diagnostic team, it is then this service who will make the decision regarding if they feel it is appropriate for them carry out a full assessment for ASD and/or an alternative assessment, which should begin within 3 months from the referral.

If your request for a full assessment for ASD is refused by the ASD diagnostic team, please follow the guidance (Requesting an assessment for ASD – NHS Pathway – point (2)) above.

If the ASD diagnostic team decide to carry out a full assessment for ASD, the assessment should follow a similar process whether it is being conducted by the NHS or an independent diagnostic centre.

The assessment should be conducted by a multi-disciplinary team that would include a core of at least three professionals from different fields of expertise.

The autism team
In each area a multidisciplinary group (the autism team) should be set up. The core membership should include a:

  • Paediatrician and/or child and adolescent psychiatrist
  • Speech and language therapist
  • Clinical and/or educational psychologist.
  • The autism team should provide assessment, management and coordination of care for children and young people with autism.

The autism team should either include or have regular access to the following professionals if they are not already in the team:

  • Paediatrician or paediatric neurologist child and adolescent psychiatrist
  • Educational psychologist
  • Clinical psychologist
  • Occupational therapist.

Consider including in the autism team (or arranging access for the team to) other relevant professionals who may be able to contribute to the autism diagnostic assessment, for example, a specialist health visitor or nurse, specialist teacher or social worker.

Service organisation and delivery for autism spectrum disorder pg. 5, point (5)


The assessment

The assessment for ASD should include the following:-

  • A detailed history from parents or carers (this is usually gathered using an autism specific interview/diagnostic tool such as the Autism Diagnostic Interview-Revised (ADIR) or the Diagnostic Interview for Social and Communication Disorders (DISCO)
  • Direct observation of the child (this is usually performed during an Autism Diagnostic Observation Schedule (ADOS) assessment)
  • Observation in a different setting (services may gather reports from other settings for this purpose when this isn’t possible e.g. the child may be home educated or a school refuser)
  • A general physical health check (if this has not previously been conducted)
  • Reports from other professionals and agencies involved with the child

NICE Pathways – Assessing autism spectrum disorder in under 19s and the National Autistic Society provide further information about what a diagnostic assessment should involve which you can download from their websites.


Outcomes of the assessment

Diagnose Words Magnifying Glass Finding Searching Medical Diagno

Following a full assessment the diagnostician will tell you whether or not they think your child is on the autistic spectrum. They might do this on the day of the assessment, by phone on a later date, or in a written report that they send to you in the post.

The report should give a clear diagnosis and a clear description of the child’s individual profile of needs because this can have implications for support. If the assessment team has concluded that your child does fit the PDA profile, the report may say that your child has ‘ASD with a profile of PDA’, ‘ASD with extreme demand avoidance’, ‘ASD with demand avoidance’ or ‘atypical ASD with demand avoidance’.

Or, if the diagnostic service are reluctant to provide a specific profile, such as those described above, it should still be possible for whoever you see to give you a detailed description of your child’s strengths and difficulties. For a child who fits the PDA profile this may include difficulties associated with acute levels of anxiety, intolerance of uncertainty, the need to remain in control of their immediate environment and the extreme avoidance of everyday demands.


If you don’t agree with the outcomes of the assessment

  • If you feel that your child presents as a complex case, you can discuss this with the professional or team who conducted the assessment and request that your child is referred to a tertiary level service (a specialist level of health care)
  • You can seek a second opinion, by going back to the GP to explain that you aren’t happy with the diagnosis and ask the GP to refer your child elsewhere.

Diagnosis uncertain

If any of the following apply after assessment, consider obtaining a second opinion (including referral to a specialised tertiary autism team if necessary):

  • Continued uncertainty about the diagnosis.
  • Disagreement about the diagnosis within the autism team.
  • Disagreement with parents or carers, or if appropriate the child or young person, about the diagnosis.
  • A lack of local access to particular skills and competencies needed to reach a diagnosis in a child or young person who has a complex coexisting condition.
  • A lack of response as expected to any therapeutic interventions provided to the child or young person.

NICE Pathways, Diagnosing autism spectrum disorder in under 19s, P.g. 5, point (6)

N.B. Funding issues can often delay the process of getting a second opinion. There may be no tertiary service in your local area and in some cases, funding requests may be refused.

NICE Pathways – Diagnosing autism spectrum disorder in under 19s and the National Autistic Society provide further information about diagnosing ASD which you can download from their websites.


What you can do if you are not satisfied at any stage of the process

  • If you are unhappy with any stage of the diagnostic pathway you can try to resolve any issues, in the first instance, by directly giving the service involved your feedback in writing.
  • If your feedback does not resolve the issue you can make a complaint about the service involved to your local NHS service.
  • It can be helpful to explain the difficulties that you are experiencing with your local MP to see if he or she is able to support your complaint.
  • Our Free Support Resource can signpost you to services that may be able to help you with this process.
  • Some families may commission the services of a specialist solicitor, but this can be expensive unless you qualify for legal aid. Also, only a few specialist solicitors experienced in health matters will be able to represent legal aid cases.
  • If you have a complaint about a private diagnostician they should have their own complaints procedure, as required by the Care Standards Act 2000.

Further information – assessment and diagnosis

The PDA Development Group have produced ‘What Makes A Good Diagnostic Assessment for a Child with a PDA Profile?’ which you can download from our website.

The National Autistic Society provide an in-depth but concise factsheet on Diagnosis for Children.


Further information – family resources

You can find further information, leaflets, websites and webinars in our extensive list of family resources and webinars.


Further reading and information about PDA

Further information about PDA can be found in the following areas of our website.

The National Autistic Society also provide an increasing amount of information about PDA.


Please note that the PDA Society are not making any recommendations nor is responsible for the content of sites and links that are external to the PDA Society.

Please contact us if you discover any broken links.