Being a parent carer of a child or young person with additional needs can bring extra situations which are challenging to know how to handle. It can also be frustrating while you are waiting for your appointment, not knowing where to turn next. There are however a number of online resources, workshops and parent support groups that you can access while you are waiting. To help support parent and carers the resources and parenting workshops cover subjects other parents have found useful. You don’t have to wait to have a diagnosis to access these workshops for parents and carers.

Starting Well offer some specific groups and workshops, all of these are free:

• Understanding your child/teen with additional needs | Starting Well (startingwellworcs.nhs.uk)
• Solihull Approach - FREE online parenting courses in Worcestershire | Starting Well (startingwellworcs.nhs.uk)

Autism West Midlands offers free online autism and anxiety training for parents carers of children who have been accepted for assessment on the Autism diagnostic pathway or who have received a diagnosis of autism. 

Autism Central offer 1 to 1 support, on-line workshops and podcast on useful topics.

Worcestershire Community Paediatric Service undertake Autism assessment and diagnosis for children age 0 to 17 years and 6 months, this pathway is also known as the Worcestershire Umbrella Pathway. A referral can be made for an assessment by a GP (doctor), school or school nurse. A referral should be made only once reasonable steps have already been made to support the young person and family in line with the Graduated Response for Neurodivergent Children and Young People. For practical purposes, referrals for those over 16 will be considered in terms of whether assessment by an adult service may be more appropriate. 

It is not unusual for children to present differently at home and at nursery or school. To understand this the assessment team requires some detailed information to begin the process. The information provided forms part of the child or young person’s assessment if they are accepted for the assessment pathway. The information consists of the following 4 parts and all of these need to be completed in full before the referral can be considered:

1. a referral form  
2. an age-appropriate consent form (young people aged 16 and over only)
3. questionnaire completed by parent or carer
4. questionnaire completed by educational setting (as long as the child or young person is attending one)

Where a child or young person does not attend an education setting, it is useful but not essential, to get a report from another setting the child goes to such as an activity or sports club. This helps the assessment team to understand how the child or young person presents in different situations.

The information provided will be assessed by a member of the assessment team. The assessment team consists of: Community Paediatricians, Speech and Language Therapists, Occupational Therapists and Clinical Psychologists. 

A decision will be made to either:

1. continue to a diagnostic assessment. An appointment will be sent to you for an assessment
2. ask for further information. Sometimes this happens if the information supplied by home or school is not detailed enough, in which case the team will ask for additional information
3. decline a referral if the information doesn’t show a need for further assessment. In this case, the assessment team will suggest referral to other services that would better meet your child’s needs

Initial appointment 

Once accepted, an initial appointment will be held with you and your child and the clinician will decide if any further assessments are needed to help understand your child’s needs better. If needed, further assessments would be carried out by the appropriate professionals and tailored to the individual needs of your child. 

These could include:

• a neurodevelopmental history
• Clinical Psychologist assessment 
• specialist speech and language assessment
• observations in education settings

A follow up appointment with a professional not previously involved may also be recommended.

In some circumstances, a specific evidence based assessment for Autism such as ADOS will be recommended by the team.

The diagnostic discussion 

A minimum of 2 clinician from the assessment team will evaluate the evidence collected and a diagnosis of Autism will be considered. The final decision will always include a Senior Clinician. A diagnosis of autism may or may not be given.

Feedback appointment

An assessment report will be produced detailing your child’s strengths, areas of challenge and strategies to support daily life (home or education). Sign-posting information will also be provided.

A face-to-face appointment will be held with the child, young person and their family to go through the feedback and the assessment report. 

The assessment team understands that everyone wishes to be seen as soon as possible and it can be difficult to wait for appointment without an idea of timescale. Due to extremely high demands on the service, it is currently difficult to outline exact waiting times for your child’s initial appointment. Please be reassured that your child will be offered an appointment as soon as one becomes available. NHS Herefordshire and Worcestershire are working with the team to bring down waiting times and provide useful information while you wait. 

In England under the NHS you now have a legal right to choose a different provider of Autism or Attention Deficit Hyperactivity Disorder (ADHD) assessments, this is called Patient Choice and sometimes Right to Choose. This means that, should you decide the waiting time for your assessment is too long, then you can choose to leave the NHS waiting list and go to an alternative provider. The provider must supply the service to the NHS somewhere in England. Your GP can advise you on which providers are able to offer Patient Choice assessments and refer you. NHS Herefordshire and Worcestershire are developing a list of quality-assured Patient Choice providers. The link to this list will be added shortly. In the meantime, some of the providers of Right to Choose Assessments for autism and ADHD can be found here: Right to Choose - ADHD UK.