My child has been added to the social communication pathway – what happens next?

Once your child has been referred to our service, our clinician will review the questionnaire you or your children’s nursery or school completed, as well as their nursery or school report.

After this, the clinician will decide the best way to support your child. In some cases, the paediatrician may have enough information, provided by multiple agencies, to support a diagnosis at first assessment.

First assessments may include a:

• speech and language only assessment: Seen by a clinician and added to the pathway before being seen by a speech and language therapist for assessment. You will have a follow up appointment with a paediatrician to feedback the outcome of the assessment
• joint assessment: Seen by a clinician and added to the pathway before being seen by a speech and language therapist and paediatrician for a joint assessment (ADOS/BOSA). The outcome and next steps will be provided at the appointment
• review assessment: Seen by a paediatrician and where enough evidence has been presented, from multiple agencies, receive a diagnosis without the need for a full assessment.

When will I hear from you again?

Different assessment types have different waiting times. At your appointment we will explain which assessment you are being referred for and the current waiting time.

At the moment, the waiting time for a joint assessment is 42 to 48 months.

We know this is a long time and we are doing everything we can to reduce this, but be reassured you don’t have to wait for a diagnosis to access the majority of the help available.

Unless your child is seen by our service for any other reason, such as ADHD medication or general health reviews, your next appointment with our service will be for an autism assessment.

Why do I have to wait this long for an assessment?

Unfortunately, the Covid-19 pandemic prevented us from completing any face-to-face assessments for more than a year. The wait time for autism assessment has risen nationally. Our waiting lists were recently reviewed and we want to be honest and share this with families so you know what to expect.

Why have children been seen before my child? Are they jumping the waiting list?

We understand many families who have children waiting for an autism assessment are in contact with each other. Due to the different routes followed within the pathways it can sometimes seem like some children are being seen quicker than others.

All children are seen in order of being referred to the social communication pathway unless a clinical prioritisation has been made. We have strict criteria for this, which is discussed by a multi-disciplinary team before decision is made to expedite a referral.

What can I do while I wait?

As we are a diagnostic service, we are unable to provide one-to-one support to families for concerns, like behaviour and mental health. However, you don’t have to wait for a diagnosis to access the majority of help and we can signpost you to what’s available.

Our children’s therapy pod – www.kentcht.nhs.uk/childrens-therapies-the-pod – has lots of information and you can check out our dedicated pages at www.kentcht.nhs.uk/leaflet/autism-spectrum-condition-asc/

I have concerns regarding my child’s mental health. How can I get support?

We recommend making a referral to Children and Young People’s Mental Health Service (CAMHS). The first step to making a referral to CAMHS is often to speak to your GP. Some CAMHS services will accept self-referrals from families. You can speak to your local CAMHS team to find out whether this is the case for your area.

Visit www.kentandmedwayccg.nhs.uk/mental-wellbeing-information-hub

If you are looking for urgent mental health help for a child or young person or are in crisis, please call the Single Point of Access (also referred to as SPA) on 0800 011 3474.

We have further links to mental health support on our website.

Autism assessment – what will happen?

To assess for autism the clinician will use either the autism diagnostic observation schedule (ADOS) or brief observation of symptoms of autism (BOSA). Both assessments are conducted in a similar way, but use different tools to complete evaluation. For example, BOSA may use parent involvement and ADOS will not.

The speech and language therapy (SALT) assessment is carried out by one of our speech and language therapists. The therapist will use BOSA or ADOS tools to complete. The observation will be filmed and video consent will be needed.

The assessment is conducted through games and conversation with your child; creating a context in which symptoms of autism can be observed.

We have a video on our website, which show what happens in an assessment so you and your child can be prepared. Visit www.kentcht.nhs.uk/service/community-paediatrics/autism-spectrum-disorder-asd/

This appointment is only part of the multi-disciplinary diagnostic assessment and does not conclude their journey on the pathway. There may be a further wait between this assessment and when you receive feedback.

The joint assessment uses either BOSA or ADOS tools to complete; with a speech and language therapist and paediatrician present.

Your child may be taken into a separate room to complete the assessment with a speech and language therapist, while you remain with our paediatrician to provide a detailed case history.

My child has been diagnosed – what’s next?

You will be told at your joint assessment or feedback appointment with our clinician if your child meets the criteria for a diagnosis of autism. The team will explain more about autism and how this may affect your child. You will also be signposted and provided with relevant support near you.

The team will share information from the assessment with your child’s GP and with other professionals such as your school, with your consent.

A written report will be provided.

My child has not been diagnosed – what’s next?

A member of the team will explain why your child doesn’t have autism and may offer to refer you to other specialists. For example, Children and Adolescent Mental Health Service (CAMHS), if appropriate.

The diagnosis is uncertain – what’s next?

Sometimes there can be uncertainties when diagnosing autism and it may not be possible to confirm or rule out a diagnosis on the day. If this happens, the team will talk to you about will happen next.

This may result in your child being seen again after an agreed period of time or for their case to be discussed at our multi-disciplinary panel.