The ASD Assessment Process: What to Expect
What is Autism
Autism Spectrum Disorder (ASD) is also known as ‘Autism’ or ‘Asperger Syndrome’. It is a medical condition that affects the way an individual makes sense of the world. ASD is caused by genetic factors. It occurs in more than 4 in 100 people and leads to difficulties in social and communication skills and ability to be flexible about things; often having strong, narrow, repetitive interests and routines. Many individuals also describe sensory sensitivity (i.e. to sound, touch, taste or smell).
More men are diagnosed with ASD than females (but it is believed that many females may have been missed or misdiagnosed). Many individuals with ASD may have an average or above-average IQ and excellent attention to detail.
It is not uncommon for a diagnosis of ASD to be accompanied by other developmental disorders, (e.g., ADHD or Dyspraxia) and mental health difficulties such as anxiety and depression.
Benefits of diagnosis
Some adults seek a diagnostic assessment as they did not have access to services when they were children. Others say that they have always used strategies to mask their difficulties, so others didn’t suspect that they were struggling as much. Some individuals feel their symptoms have previously been misinterpreted as behavioural or mental health difficulties.
Receiving a diagnosis in your adult years can be a mixed experience, many people feel an overwhelming sense of relief as they can finally put a name to all the difficulties they have been facing and feelings of being ‘different’ and ‘alone’. Others feel sad that it has taken so many years to receive their diagnosis leading to another, inaccurate diagnosis been given.
Many individuals describe finding it helpful to be able to finally access support (e.g. social support groups, ASD services), relevant information and benefits (e.g. housing, supported employment, advocacy and mentoring), and access reasonable adjustments (e.g. through work and university) that are able to better understand their needs).
The Assessment Process:
ASD is diagnosed by gathering evidence from an individual, their loved ones and by completing a clinical assessment. Currently, there is no blood test or brain scan that can test for ASD. It is a bit like a jigsaw, gathering pieces of information from different sources to see if the picture is autism or if the symptoms and individual experiences are better explained by something else, for example, trauma, anxiety or problems with learning.
The Edinburgh Practice follows best practice guidance from the National Institute of Clinical Excellence (NICE, 2014) and Scottish Intercollegiate Guidance Network (SIGN 2016) and uses a range of gold-standard clinically recognised autism assessment tools. Below is a guide to how our assessments proceed:
Stage 1: The Clinical Assessment
An appointment will be arranged at The Edinburgh Practice or video conferencing that is convenient to you. Normally this lasts around 2 hours. For patient’s travelling to Edinburgh, it can be possible to complete the assessment and feedback session all in one day, you just need to request this at the time of booking an assessment.
At the start of the appointment, the clinician will want to get to know you, the reasons you have come for an assessment and more about the difficulties you are experiencing. It may help to bring along any notes you have to the session.
Following this, there will be a structured interview. This will involve the clinician asking you questions about your relationships, interests and how you feel about things, combined with some tasks that will be explained in detail at the start of the assessment.
Stage 2: Additional information/Assessment
The clinician you see for the assessment will ask if there is someone who knows you well can contribute to the assessment (e.g. parent, sibling, partner, boss). Questionnaires will be given to these individuals with your permission and the Clinician will contact them for more information. We are aware that not everyone will have someone they can ask to be involved in an assessment and this will not prevent you from having an assessment.
Very rarely, some patients have other difficulties (e.g. medical, significant mental health, learning or speech and language) that need a further assessment before a conclusion can be reached. Support with accessing this assessment is always offered.
Stage 3: Feedback, Support & Recommendations
Once all of the above information is gathered, you will be provided with feedback on whether or not you meet the criteria for ASD or whether there is another reason you may be experiencing the problems you described in session.
We will aim to complete the feedback appointment within 2 weeks of your first assessment session. This session typically lasts around 2 hours.
As well as feeding back the outcome of the assessment, the Clinician will give you the opportunity to ask questions and discuss concerns. For many individuals, the desire to explore whether they have ASD or not will be driven by a current change in mood or circumstances. Information about what supports may best meet your needs after the assessment will be provided in this appointment.
A report detailing the outcome of the assessment and conclusion made will be provided to all individuals. This does not contain any of the more private details discussed in the assessment, so it can easily be given to those who support you, for example, your manager or university student services.
Written information will also be provided about what local supports may be helpful to access moving forward.
Additional sessions or reports can be provided that detail more specific work and educational adjustments. You can discuss the cost of these with the Clinician in the session.
Patients travelling to Edinburgh
It is possible to complete the assessment and feedback session all on one day, with a break in the middle (taking 4 hours in total). You just need to advise this at the time of booking an assessment.