The code of practice describes what should happen before an assessment, during the assessment process and following an autism assessment. 

It says that people involved in the assessment process must receive training on how to identify autism and how to make referrals for assessment, as well ensure that that they explain the process clearly to autistic people and families.  

Before an assessment

The code says:

• referrals must follow a Wales-wide pathway, which says what will happen and how long the process will take
• what the referral must include
• the views of the autistic person and their family must be considered
• people on the pathway must be offered support while waiting for an assessment 
• there must be a single point of access for assessments, which means that all referrals go to, and are decided by, the same team. If a referral is not accepted by the assessment team, the assessment team must say why, and what more information may be needed. 

Assessments

The code says:

• children’s and adults’ diagnostic services must work together
• the assessment must consider any co-occurring conditions
• assessment pathways must be available publicly and professionals must be aware of them 
• people in secure hospitals or prisons must have access to assessment services and support from professionals who understand autism 
• assessments must be provided by a team of professionals with different skills and experience (multi-disciplinary)
• assessments must take place within the timescales agreed by the Welsh Government. At the moment, this means 26 weeks between the referral being made and the first appointment 
• professionals who carry out the assessment must take into account all relevant information, including the views of the autistic person and their family
• there must a point of contact for the autistic person or their family, in case they have any questions during the process
• the outcome of an assessment must be communicated with the individual or family, whether or not a diagnosis is made 
• onward referrals must be offered to individuals with co-occurring mental health conditions or learning disabilities, who may need additional support
• carers must be offered a referral for a social care assessment. 

After an assessment

The code says:

• that a follow up appointment must be offered within six months of a diagnosis of autism. If no diagnosis is given, relevant information and support must be made available, and if requested, information on seeking a second opinion must be provided
• local authorities must make autistic people and their carers aware of their rights to a social care assessment and information and signposting for autism services 
• health boards must collect information on assessment waiting times 
• with permission from autistic people and families, health boards must make onward referrals to appropriate services following assessment, whether a diagnosis was given or not, including to social care services 
• local authorities must work with health boards to share information so that people can get the right support as quickly as possible
• local authorities and health boards must work together to ensure an appropriate person is chosen to oversee and promote assessment pathways for autistic people and families. 

How we think the code could be improved

It’s important that autistic people and families are able to get a timely autism assessment. This can help someone to understand themselves or their child better, and to get the right help and support. 

The code says that referrals and assessments must be arranged within agreed national timescales, which is to be welcomed. We would like to see more detail on how these nationally agreed standards and waiting times will be decided, to ensure that autistic people and their families are included, and that best practice advice and guidance is fully considered. Currently, the waiting time standard between referral and assessment in Wales is 26 weeks, which is set by the Welsh Government, however best practice guidance says that the wait should be three months (13 weeks). 

We would like to see clear referral pathways that say who is able to refer someone for an autism assessment. Assessment teams that decide whether or not to accept a referral should also be working to the same criteria across Wales, so that decisions are consistent for all and not based simply on managing capacity.

We think that there should be a duty on those undertaking an autism assessment to keep in regular contact with those on the waiting list, and provide them with updated information and support during this period. 

There will be many people with mental health conditions or learning disabilities who require an autism assessment. The code should ensure that referrals and assessment pathways take this into account. 

We know that following an autism assessment, many people find it difficult to get health and social care support. This is often for lots of different reasons – many autistic people are told that they don’t meet the eligibility criteria for a certain service, or sometimes the sort of service someone may need doesn’t exist.