More than a diagnosis What families with ADHD and Autism need to thrive

Healthwatch Wakefield wanted to explore the experiences of local families with children who are waiting for a diagnosis or have been diagnosed with ADHD and/or Autism. The focus was understanding how these experiences can affect families, what could help to improve their experience, and what gaps and barriers there are to accessing these services. They conducted 5 interviews with families as they navigate the emotional and exhausting journey of Autism and ADHD with their child. 

When a parent first notices differences in their child’s development or behaviour is the start of a process of understanding their child’s needs. At this time, they may face challenges in having their questions and concerns taken seriously by family, friends and professionals. 

For children, these differences may be felt but not always understood, sometimes leading to a sense of being set apart from their peers. 

Nurseries and schools can play a key role in identifying needs and providing. However, experiences are varied. While some families find schools helpful, others encounter limited understanding, and additional pressures. Children may also try to fit in at school and behaving differently causes a strain which emerges in behaviours in the place they feel safe, which is at home. Families who feel that their concerns aren’t believed feel isolated and unsupported. 

Staff at schools, family hubs, and community services have access to neurodiversity training delivered by Wakefield Metropolitan District Council ‘s specialist teachers and this has led to over 5,000 individuals receiving the training. The aim in providing this is for individuals who have contact with children to be better able to understand presentations of young people who may be neurodivergent and care for them equipped with skills and tools to help families throughout the child’s development. 

A diagnosis assessment for Autism or ADHD is not a simple process, requiring varied assessments by different professionals, and this can seem inconsistent and confusing to families. The complexities of assessment and the numbers requesting this process have led to long waits to be seen. 

It is important to note that while a diagnosis may bring recognition and access to some support, such as medication, in itself it isn't therapeutic. Many families feel that getting a diagnosis is the first and most important step in helping their child to flourish, but it isn't a requirement of many offers in Wakefield, and so it is possible to seek support earlier and it isn’t reliant on having completed the process in full to get help. 

Parents can access external support while waiting for assessment to support their child however the pathways to support are not clear or understood by families which means they are managing on their own which can impact on family life, work and finances. 

Families and children require support to manage the challenges they face; however, a diagnosis may not be the outcome of the assessment process and therefore support needs to be based on needs and not diagnosis. Additionally, it must also be recognised that where a child does receive a diagnosis this may not change or increase the support they receive if the child’s needs are already being met. Families often find strength in increased knowledge, peer networks, and supportive environments outside of clinical pathways. 

Families with greater capacity, time, or financial means can often navigate the system more successfully, raising issues of equity and fairness in current support models.