What Does a Good Autism Diagnosis and Support Experience Look Like?

15/12/2020

Recent research has looked at what parent carers would identify when talking about a good experience of Autism Services, including the diagnosis process

Most research has in fact been on parental dissatisfaction with their experience of Autism Services, including the diagnosis process.

Areas of dissatisfaction were reported as;

1. Waiting times – both for diagnosis and access to services
2. Lack of information – about autism in general, support available and financial issues
3. Access to services – confusing criteria, services not suitable for needs, no early intervention
4. Professional behaviour – use of complex language, ‘quick’ judgements made, lack of reasonable adjustments, not including parental voice / views

Themes relating to positive experiences were reported as follows;

1. Specific agencies support valued – especially school support
2. Enduring/sensitive and effective relationships with professionals – especially those that show empathy and understanding
3. Discussions that are comprehensive, transparent and accessible – which respond to parental views
4. A clear / structured process – knowing what to expect and when

Reference: ‘Above and beyond’: The perceptions of mothers of children with autism about ‘good practice’ by professionals and services - Catherine E. Stanforda, *, Vaso Totsikab,c , Richard P. Hastingsa,c

Would you agree with the above?  Is there anything missing?  Tell PACC what a good experience of Autism Services look like to you.

We also want to understand what the main type of support you feel is needed.  Based on our discussions with families to date we have listed some things that families of young people with possible Autism have told us they want support with addressing;

• School aniexty - due to sensory and communication issues
• Making friends and understanding relationships
• Understanding and regulating emotions
• Issues with food 
• Issues with sleep
• Independence
• Making choices and expressing wishes

Are there other areas of life that we might have missed?

Email your thoughts to us on enquiries@paccshropshire.org.uk