During the current Coronavirus pandemic, it is likely that diagnostic assessments for autism and other neurodevelopmental conditions are put on hold. On this page, Dr Venkat Reddy shares advice for dealing with this uncertainty and preparing for assessments when they restart.
Why is a diagnosis important?
It is useful to have a formal clinical diagnosis of autism to access help. It is even more important to understand the full profile of strengths and difficulties of your child. This could be any neurodevelopmental difference affecting communication, social interaction, attention, impulsivity, activity levels, intellectual ability, sensory sensitivities, and secondary mental health problems.
Why might this pause on assessments be difficult as a parent?
It is incredibly frustrating and stressful to deal with the uncertainty of not knowing when the process will start again if you have been waiting for a long time for an assessment.
You might be worried about the impact on your child's day to day functioning at home, the loss of time for early intervention if your child is very young, their educational progress and mental health problems. Without a diagnosis you may feel that you cannot access the help and support you need.
What can we do while we wait?
- Keep safe and well: Develop and maintain a routine, use visual prompts, maintain physical activity, healthy eating, appropriate limits on screen time and good sleep routine. Use primary care services, NHS 111 and hospital services for any physical health problems. Make use of emotional health and mental health services that can offer support by telephone, by video and face-to-face.
- Write down your concerns and questions: You can write down your concerns and questions. Make sure that the Red Book is up to date and keep a developmental journal. You can use tools like a behaviour chart, sleep diary and food diary to record the impact on life at home.
- Organise information from other agencies or professionals: Make sure that questionnaires like social communication questionnaire are completed and returned. Chase up any pending information from educational settings that is needed to support the assessment.
- Understand your local pathway: You can find information about your local Early Help pathway, needs-led support, parent / behaviour support, Education, Health and Care Needs assessment process on your Local Authority Website under “Local Offer”. You might be able to access support for learning, behaviour, sleep, eating, toileting and secondary mental health problems without a diagnosis.
- Develop a network: National and local charities, local Parent Carer Forums, Parent Support Partnership officers can put you in touch with other parents who are in the same position as you are.
- Look after yourself: This is stressful time for parents and carers with added concerns about finances, social isolation, other caring responsibilities and your own neurodevopmental and mental health difficulties. You need to look after yourself to be able to advocate for your child when the assessment services are in a position to offer face to face assessments.