Accessing an Assessment: Is this for you?

Some people may identify themselves or their child as autistic without a formal clinical assessment and diagnosis. This is referred to as self-identification or self-diagnosis. Within the autistic community there is growing recognition and acceptance around self-identification, particularly as access to diagnosis becomes more challenging. There are a number of reasons a person might self-identify, including waiting for an assessment. For some, clarification by way of formal clinical assessment is not something they feel is necessary, and for others the barriers to assessment make it too stressful to pursue.  

Self-identification can have a hugely positive impact on the lives of autistic people. Benefits to this approach include: 

• Freedom to explore their individual identity  

• An increased understanding of themselves, their  strengths and their differences  

• Increased confidence, self-esteem, empowerment and feeling of acceptance 

• Clarity around experiences and where at times there might be a lack of support 

• The ability to identify support needs, and advocate for themselves 

• Accessing support 

• Positive outlook for the future  

 

“Despite my discomfort at self-diagnosing (awaiting formal medical assessment), accessing support has been very easy here at Dundee Connections. The whole process has been straight forward, uncomplicated and incredibly accepting.” 

Accessing an autism assessment is a very personal decision, for a person and/or a family. These are some of the reasons why some choose to seek an autism assessment:

• Offers an ability to feel confident in a formal diagnosis and their autistic identity is accepted within wider society 

• Can provide definitive clarity, allowing for a true understanding of identity 

• Validates independent lived experience and affirms sense of self  

• Empowers autistic people and their families to advocate for their needs 

• Provides access to  additional pathways of support 

“I really needed the validation of a diagnosis before I could be open about my neurodiversity”

An autism assessment consists of a multi-disciplinary team of qualified professionals pulling together a range of information, from early development to present times and circumstances. This information will be gathered in a variety of ways, through paper-based questionnaires, reports from various institutions the person has been in contact with throughout their life, such as medical professionals and the education system.  The process also involves discussion and observation between professionals and the autistic person, as well as input from their family or those close to them throughout their life. If you are exploring an autism assessment for your child, it is important that they are involved with this process, from referral to assessment. 

Within Scotland there are two main routes for accessing an assessment, this either being via the NHS or privately.  

Experiences can vary across Scotland with regards to accessing NHS assessment. In some areas, NHS Boards are moving away from single pathways, like autism assessment, and moving towards neurodevelopmental pathways. Others are moving towards a request for assistance approach, rather than assessment.  

The first step to accessing an assessment via the NHS would be to discuss a potential referral with a GP, relevant healthcare or education professional. For school-age children, this is usually done through the education system.  

In some areas, self-referral is an option. In this circumstance, your GP, relevant health care or education professional would advise if this was possible.. Self-referral involves completing a referral form which asks why the assessment is being requested.  

If approaching your GP, relevant health care or education professional, they may wish to explore the reasons you are seeking an assessment further before a referral is made. This is so that they can gather information, and decide whether your case meets the criteria for referral in your local area. This criteria can vary from health board to health board.  

It can be very helpful before speaking with a GP, relevant health care or education professional to write down your reasons for seeking an assessment and what impact an assessment would have. It is also worthwhile to spend time prior to your appointment detailing some examples and collating evidence to support your request. Some examples of differences to note are:  

• Communication 

• Interaction 

• Planning and Organising 

• Sensory Processing 

• Self-soothing and regulatory activities 

• Special Interests 

When considering the areas above it is considering both strengths and differences, but also the wider impact these areas have on day-to-day living, such as education, employment, relationships and mental health. 

Above is not an exhaustive list of things to consider, and it is important to note that all autistic people have individual and differing experiences.  

As part of this discussion, your GP, relevant health care or education professional may request a screening questionnaire.. These questionnaires can inform whether to make a referral and aim to provide guidance for professionals in the early stages of the diagnostic process. These screening tools are readily accessible online, and some of the main questionnaires are linked to below: 

• AQ10 (Adults)

• AQ50 (Adults)

• RAADS–R (Adults)

• AQ10 (Child)

Some people chose to complete these screening questionnaires before speaking with their GP, relevant health care or education professional. It can be useful to bring the results of these questionnaires to your appointment. However, it is important to highlight that these screening questionnaires do not equate to diagnosis, and results can vary across different questionnaires. 

Once a referral has been made and accepted, you will then be put on a waiting list for an autism assessment. Unfortunately, waiting times can vary between health boards and can be very long. To find out more about waiting times in your area, you can contact your local health board. National best practice guidelines for autism assessments can be found here – SIGN 145 – National Best Practice Guidelines

Sometimes autistic people report difficulties in accessing an assessment via the NHS. This can be for a variety of reasons, such as the declining of a referral, limited knowledge of local pathways, or limited availability in local areas. If you have difficulty accessing an assessment, please contact Scottish Autism’s Community Advice Services, where we can help. Details of our advice services are at the bottom of this page. 

Some choose to access an assessment privately, normally due to long NHS waiting lists. However, the cost and range of support can vary significantly from one private provider to another. These are some things to consider when researching and discussing assessments with private providers:  

• Do they follow national best practice guidelines? 

• Are the clinicians involved in assessment registered with an appropriate professional body (dependent on their specialism, the professional body may differ)? 

• What are the clinicians’ accreditation and their experience in autism assessment? 

• What does the cost include? For example, some may only offer initial screening, some may offer a full assessment with a report, and in some instances, it can be a full assessment, report and post-diagnostic support. 

• Should the assessment result in a diagnosis, will the diagnosis be recognised by the local NHS board? This is called a shared care agreement.

Sometimes the NHS may cover the cost of a private provider or independent diagnosis. However, this request requires the completion of an UNPlanned ACtivities Form (UNPACS) and agreement from the health board.