Background

As a parent, you want your child to reach their full potential. Sometimes children need specialist support and this can require an assessment. This can be a difficult time for parents with so much uncertainty, and can be the cause of increased anxiety for the whole family. It is important that you seek support and understand what you can do to help your child.

Research

In Northern Ireland, the waiting list for assessment for suspected autism in huge. According to the Northern Ireland Audit Office, more than 5,000 children with suspected autism are waiting for an assessment.[1] This is an increase of 148% from 2016.[2] Furthermore, the waiting lists vary depending on what health trust you live in. A total of 180 children in the Southern Trust will wait less than 13 weeks to be seen by a specialist, while there is a 10-week wait for a first appointment in the South Eastern Trust, where 63 patients face delays. The Northern Trust has the biggest backlog, with 1,883 children on waiting lists – which Trust officials partly attributed to it having the highest school age population. The longest delay is 490 days. In Belfast, there are 1,714 children waiting for autism assessments, with the longest wait at 846 days. The Western Trust confirmed it has 1,099 children waiting on appointments, with the longest wait at 720 days.[3]

Awaiting assessment for your child can exacerbate mental health and anxiety among parents. Parenting NI know, from our own studies, that just over a third of parents (37%) have reported high levels of emotional and mental health at the moment. While 44% reported a medium level of emotional and mental health and just under a fifth (19%) of parents reported a low level of emotional and mental health at the moment. This is likely higher if you are a parent waiting for an assessment for your child. Children’s education was the top area that parents felt has caused concern or affected their emotional health and wellbeing over the past six months with 50% choosing this option.  If you are in this situation, it can help to know you are not alone.  Many parents in a similar situation also feel stressed and anxious, this is to be expected and it is important that you seek support for yourself, during this challenging time.  Support can come in many guises – it can be from family, friends, a faith group or a community group or charity –online or in person, with specific experience of supporting parents.

[1] https://www.niauditoffice.gov.uk/sites/niao/files/media-files/242135%20NIAO%20Special%20Education%20

[2] https://www.niccy.org/media/3976/more-than-a-number-child-health-waiting-lists-in-ni-final-19-october-2021.pdf

[3] https://www.irishnews.com/news/healthcarenews/2021/04/19/news/-desperate-parents-opting-to-pay-up-to-1-400-for-private-autism-assessments-2293075/

Top tips

Below are some top tips and ideas to help you manage the time you are waiting for your child’s assessment:

Visual Supports

If your child struggles with communication, make some visual supports such as photographs of everyday things. Use the visual support while also naming the object or task. Think about how you give your child instructions and consider if this could be clearer e.g. break down into a step-by-step plan.

Thinking about time differently

If your child struggles with the concept of time, try using a sand timer to help your child. Your child may also understand much better if you say, “Two more goes before we put your toys away” rather than “five minutes until we tidy up.”

Play

Play helps to develop skills such as sharing, patience and increase attention span. It is also a great way to strengthen your relationship with your child while having fun. Encourage your child to lead the play activity using their imagination.

Focus

Focus on what your child can do rather than on what they cannot. Use lots of praise and encouragement when they accomplish a new task or behave well. All children are unique and you as their parent have the greatest knowledge of your child. Keeping a notebook on what behaviours you notice can help with the assessment.

Learn

Learn the art of keeping calm. Reacting to your child with a calm assertive approach will work best when things do not go so well. Speaking to other parents can reduce feelings of isolation and increase your knowledge of autism, which may help your child.

Practise self-care

Parents need to look after their own mental and physical health so they can parent effectively and advocate for their child. Talking through your concerns and frustrations can help reduce your worry and anxiety. Seek support from other parents, a support group or organisations such as Parenting NI.

Support available

Parenting NI encourage parents in Northern Ireland to use our Information and Support Line/web chat to speak to a Parent Support Officer who will provide a supportive listening ear and help guide parents to the services that may be most appropriate to them depending on their own unique circumstances.

Additionally Parenting NI have some resources online for all parents that provide advice and signposting for parents including an articles and podcasts that can be found on Parenting Family.

Further information including top tips and contact details can be found at www.parentingni.org.