Some reflections around World Autism Acceptance Day

This article is a reflective piece about my own experiences working with children and families in various educational settings and across all ages, including early years, primary, secondary, college, alternative provision and CAMHS.  I have summarised them in five sections and shared my own key learning points as an applied psychologist.  I have included some key links for organisations that readers may find it useful for signposting families and educational settings.

Feelings associated with exploring autism 

One of the most common experiences I have found is that for lots of families a journey of exploring the possibility of autism can be anxiety provoking. Feelings attached to that process can include shame, guilt and confusion, but also a sense of relief, a sense of justice, and of being heard and understood and validated.  

There are also cultural differences in how people process those experiences. Some cultures seem to be more open and accepting, whist in others there can be secrecy within the family due to feeling being judged or misinterpreted by others, and stigma attached to autism. I feel that as applied psychologists we have key roles in listening to families' voices, explicitly acknowledging and validating their feelings, and creating psychologically safe spaces where those feelings can be explored and processed. 

Use of the internet and sources of knowledge  

Many parents and carers are desperate to find the "right answer" and use the internet to educate themselves. However, this process can often evoke very strong and very unhelpful feelings, making them feel even more isolated and stressed than in the first place, due to misconceptions and myths that still exist around autism.

On the other hand, some parents and carers may find the internet as a source of connection (e.g. through online forums) – a helpful and a safe community where they can share their experiences and problem solve jointly.  We could use our knowledge and expertise in psychology to support families and educational settings and to signpost them to available support at local and national levels.

False belief that diagnosis means an automatically high level of support 

I get a lot of questions from parents, carers and educators who falsely believe that if a child receives a diagnosis of autism this will automatically lead to a specialist provision and/or accessing additional support.  For some parents having a diagnosis can be very liberating and for others it can be terrifying and often associated with a feeling of loss. 

However, the truth is that having a diagnosis does not necessarily mean that the child will be placed in a specialist provision and/or will receive extra funding, as the current SEND Code of Practice highlights a 'need based' rather than a 'diagnosis based' approach. Therefore, having those explicit conversations can expose some of the myths around diagnosis and support.

Significant increase in referrals

Since returning back to face-to-face work I have observed a dramatic increase in referrals, in particular in early years provision, due to social communication and interaction needs, speech and language needs and behavioural difficulties.  Sometimes these difficulties can relate to possible underlying autism, and other times they can be associated with an underlying language delay, children's lived experiences, medical needs and other genetic factors.

Thinking about the context of the pandemic, it is not surprising to reflect and wonder that there are key environmental factors (e.g. the lack of experience and exposure to social situations) that could also be associated with those needs.

I feel that before exploring and considering possible underlying neurodiversity it is important that we, as applied practitioners, share our hypotheses explicitly with families, children and young people themselves in an accessible way. This notion of 'giving the psychology away' can be empowering and beneficial. 

The consultation process provides the time and space for everyone to work collaboratively, and to explore and gain a holistic picture of a child. Gathering the background information and their lived experience is key in building that puzzle.  We could work with all the key systems around the child to build meaningful connections and offer support to them. 

One idea could be to focus on developing adults who support young children's understanding of early child development and pedagogy. Secondly, including a particular focus on play, relationships and wellbeing as important precursors for supporting all areas of children's development. 

Some implications of early diagnosis and misdiagnosing 

In recent years I have worked with lots of children who have been diagnosed with autism at a very early age. Once their language skills were fully developed and became more age appropriate their previous difficulties (that seem to fit in the autism spectrum and DSM-V criteria) were no longer relevant. However, when someone has been diagnosed with autism this is permanent and cannot be changed.  

The Coventry Grid Interview (CGI) tool was developed (Charlotte Flackhill, Sarah James, Richard Soppitt and Karen Milton, CAMHS team in Sussex) to differentiate autism and attachment difficulties, and to allow clinicians to use this with parents during the assessment process. However, this is not consistently used as part of the diagnostic assessment process (both in private setting and CAMHS).  

Therefore, there are children who have been misdiagnosed with autism, despite all their difficulties related to adverse childhood experiences. Often these children do not respond to 'typical recommendations for autism' and they need relational and trauma-based approaches to support. I wondered if it would be useful to include the CGI as part of a standard diagnostic process at a national level (in same way as ADOS and other valid and reliable tools are) to triangulate the data part of hypothesis and formulation process.

To sum up I feel that children and young people are experts by experience, and we as applied psychologists have expertise in psychology.  We can apply the psychology we know to make a difference for children and young people who have been given a diagnosis with autism and other neurodiversity. My experience has taught me that these children and young people can and will thrive in life – they may become independent adults, go to the University and further education to pursue their career, acquire life skills and live a life based on their aspirations and hopes.  All they need is for the environment to be right for them, and for others to value and listen to their voice, and accommodate their needs.

"For autistic individuals to succeed in this world, they need to find their strengths and the people that will help them get to their hopes and dreams. In order to do so, ability to make and keep friends is a must. Among those friends, there must be mentors to show them the way. A supportive environment where they can learn from their mistakes is what we as a society needs to create for them."

From an article by Bill Wong

Some relevant services and organisations 

The National Autistic Society provides advice and guidance and a wide range of information about autism – from what autism is, to diagnosis, to socialising and relationships. 

Autism Education Trust is a not-for-profit organisation supported by the Department for Education. Their 360-degree support programme offers education professionals training, practical tools and a wealth of free resources to better support autistic children and young people aged 0 to 25.

The Autism Toolbox is a free online resource developed to support the inclusion of autistic learners in Scottish early learning and childcare settings, primary and secondary schools. 
The toolbox supports the Scottish Strategy for Autism which aims to build on improvements to autism services and increase access to these.

Book and a movie for "light reading"

• The Curious Incident of the Dog in the Night-time 
• Rain man 

 

This article contains personal reflections of the author and is not intended to reflect the views of any member network or the BPS as a whole.