Haringey Community Paediatrics: Pathway for children referred for a diagnostic assessment of autism

Telephone: 020 8702 5311
Email for referrals: whh-tr.compaed-har@nhs.net

Who is this care pathway for?

This care pathway has been written primarily for families and carers of a child who has a diagnosis of Autism.
This information is also likely to be of interest and helpful for professionals as well.

Who do we see?

We see children where there are concerns their social communication and possible autism who have not yet reached their 12th birthday AND who have a Haringey GP / attend school in Haringey.
With children who require a diagnostic assessment for autism who are 12 years or more, they are seen by the Child and adolescent mental health service (CAMHS) for this work – for a professional to make a referral to CAMHS, if they contact the CAMHS Access Administrator at Burgoyne Road Clinic on 020 8342 5900/5927 they will provide them with a referral form.

How to use this tool

When you scroll down you will see the information provided in this care pathway is set out in the following sections:
  • Who we see?
  • Who can refer and how?
  • Care Pathway: gives a flow-diagram type overview of the pathway
  • Detailed actions: sets out in more detail what is involved in the different parts of pathway
  • Associated documents: more for use by professionals
  • Resources: these are links to relevant web sites
  • Quality standards: this is a list of the quality standards that we report on annually on this web site and these are designated by QS where they appear in the text
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Autism Care Pathway

Detailed Actions to be Completed

Referral Received

When your child is being referred to this service this should be discussed with you so that you are aware of the reasons for the referral and your consent given

Please note:

  • We use an electronic patient record to hold our clinical notes and documents. This in turn is accessible by other professionals who work for Whittington Health and helps greatly with our information sharing
  • At the end of each appointment we will write a report that is sent to you with an agreed plan and copy list of all relevant professionals. We aim to send this out within 2 weeks of the appointment (QS-1)
  • We welcome and actively seek, and act on feedback from all who use our services (QS-2)

 

Referral Triaged

All referrals are triaged by a paediatrician who will:

  • Review the referral of your child and take a decision based on the information provided
  • To undertake a holistic assessment, we may request additional information from other professionals who know your child
  • Make any additional referrals to therapy services if your child is not already known, e.g. speech and langue therapy, audiology etc, so that any waiting time for these services can be minimised
  • When your child is accepted by the service you will get a letter informing you of this; you will also get a Parental Questionnaire which is very helpful for us if this is completed and brought along to the first appointment

The national standard is for all children to be seen within 18 weeks of referral – although we aim to see children well before then (QS-3).

 

Next Steps
 

There are a number of different clinics in this pathway and which ones your child goes through will depend on their presentation, previous assessments and to some extent their age. All or most children go through Social communication – part 1 and then either Social Communication Part 2A or Social communication Part 2B. Descriptions of these are given below.

 
Social Communication
Clinic - Part 1

The large majority of our children go through this clinic. Your child is seen by a paediatrician for a holistic assessment that will include:

  • Developmental assessment
  • Review the child’s physical health
  • Consideration of comorbidities in the child’s presentation
  • Consideration of investigations including some baseline bloods tests

When we receive the investigations results we will write to you with the results; if there are any abnormal results we will contact you directly and arrange an appointment to discuss these further

The case is then discussed with the consultant and a decision is taken as to which clinic your child will go to next, Social communication part 2A or part 2B (these are described below).

 
Social Communication
Clinic - Part 2A

In this clinic your child will be seen over ˝ a day by a paediatrician and a specialist SLT for a final review and a standardised assessment called an Autism Diagnostic Observation Schedule or ADOS for short.

In this clinic:
  • If a diagnosis of autism (or not autism) can be made this will be fed back to you on the same day
  • If there remains clinical uncertainty about the diagnosis, then a school or nursery observation is undertaken by the specialist SLT and a follow up feedback appointment is arranged
  • Consideration is given again as to the presence of any comorbidities
  • A management plan is agreed between you and the clinicians. If the diagnosis is autism, then you will be given our comprehensive information pack on autism.
 
Social Communication
Clinic - Part 2B

In this clinic your child will be seen over ˝ a day by a paediatrician and your local SLT who knows your child for a final review. In this clinic:

  • If a diagnosis of autism (or not autism) can be made this will be fed back to the family on the same day
  • If there remains clinical uncertainty about the diagnosis, then your child is referred to our specialist SLT for an ADOS, and then a follow up feedback appointment is then arranged
  • Consideration is given again as to the presence of any comorbidities
  • A management plan is agreed between the family and clinicians. If the diagnosis is autism, then the family will be given our comprehensive information pack on autism

Not a Diagnosis of Autism
For some children the diagnosis of autism is not given. We will have a discussion with you about the profile of your child’s difficulties and a review of the supports in place with you. Additional referrals may be made as at the end of this depending on your needs and views.
 
For some children we cannot make a diagnosis. Typically this is because the individual child’s history and profile are complex, there may be additional co-morbidities and the total picture is difficult to fully understand. The numbers of these children are few and one option will be of a referral for a 2nd opinion. If this is the case with your child we will discuss this fully at the time and let you know what your options are.
 
 
Post Diagnostic Work

If a diagnosis of autism is made the follow are available and are set out in your child’s management plan that you get at the time of the diagnosis:

  • Your child will continue to receive input from your local SLT
  • If your child is under 5 years of age, we will offer you the Early Bird course – this is a course designed for parent of children under 5 who have had a new diagnosis of autism
  • You will also be offered a place on our Post Diagnosis Group – this too is a group for parents where you get to meet a range of professionals who can give advice in their area of expertise and other families in a similar situation as yourself
  • We will offer you paediatric follow up if there are any medical issues
  • Any additional referrals are made to relevant services, e.g. community dentist, CAMHS, OT, depending on your child’s needs
  • Key Worker for your child is usually the SENCO in the Nursery or the School – this is someone who will be able to help you understand the complex world of disability and the range of service available.

 
Discharge or
Transition to
Adult Services

When our work is complete then we will discharge your child from follow up in Community Paediatrics. However there remains the possibility of us seeing you and your child again if problems emerge over time. For many your child will remain under therapy services and your therapist can flag up any concerns that you have with the paediatrician. Alternately someone such as your GP can refer you back to be seen again.

If your child is under follow up with the Community Paediatric Service coming into their adult years, typically this will be a young person who is in one of the borough’s special schools, then we will participate in the transition process to adult services and make any relevant referrals to adult medical services and/or the Adult disability service.
 
 
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Associated Documents

Resources

Useful links  
 
Recognition, referral and diagnosis of children and young people on the autism spectrum (Issued: September 2011)
 
 
The National Autistic Society
The National Autistic Society is the leading UK charity for people with autism and their families. They provide information, support and pioneering services, and campaign for a better world for people with autism.
 
 
This is a government sponsored NHS website that presents information on a wide number of condition and the link on this page takes the reader to the relevant page for Autistic Spectrum Disorders.
 
Haringey Autism is a group for parents and carers of children on the autistic spectrum living in the London Borough of Haringey.
 
Markfield is a community centre in Haringey which promotes the dignity, choice, independence and community inclusion of disabled people and their families.
 
The Disabled Children’s team provides advice and assistance to families with children who have severe and complex disabilities.
 
This information is for parents/carers of children with special educational needs and/or disabilities. It explains the support we offer in Haringey for those children and young people. This is called our ‘local offer’.
 
Haringey Learning Disabilities Partnership provides health and social care services for adults with learning disabilities and their carers. The Partnership aims to support people with learning disabilities achieve independence and life-time wellbeing.
 
Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:
are under 16 AND has difficulties walking or needs more looking after than a child of the same age who doesn’t have a disability.
 
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Quality Standards

QS-1
We will send out our clinic letters within 2 weeks of the appointment
 
QS-2
We welcome, actively seek and act on feedback from all who use our services
 
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Working on it!