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

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)

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).

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.

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).

In this clinic your child will be seen over ½ 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.

• 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.

In this clinic your child will be seen over ½ 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

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.

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.