Here we answer some of the most Frequently Asked Questions (FAQs) we are asked. Please click the + sign to expand the box to read more.
Here we answer some of the most Frequently Asked Questions (FAQs) we are asked. Please click the + sign to expand the box to read more.
There are several profiles of how someone’s autistic strengths and differences may present. Some of these profiles have a label such as ‘female presentation’ (not just for females), PDA (Pathological Demand Avoidance) and Savant.
When we complete diagnostic assessments for individuals, we think it is important to try and best understand your profile, so we can make recommendations of things the world around you can do to make things a little easier for you. It can also help us to think of things we can support you with in developing certain skills or ‘fine tuning’ some of the strategies you are using for example conflagrating and when to use and not to use so your mental health is not impacted.
Our team has several years experience in assessing female presentation. We have in-depth knowledge and skills around the various camouflaging strategies that people may use to manage and navigate social interactions in a neurotypical world. Typically, when people think of ‘camouflaging’ behaviours, they assume this is just masking; But we know many will use compensatory and assimilation strategies as well. During the diagnosis process, we use various tools to inform the assessments as well as using the peer support practitioners lived experience of using such strategies. This supports the clinicians to identify subtleties that neurotypicals may miss or not be as attune too.
Our team of experienced clinicians are highly trained in the ADOS-2 and will reliably identify females presentation. We use the ADI-R alongside the ADOS-2, this is ‘gold standard’ (as described by NICE) to support identification of this profile. This process ensures thorough assessment as we do not solely rely on the observation to reach the diagnosis.
The ADOS-2 is a standardised, semi-structured observational assessment used to assess communication, reciprocal social interaction, imagination/creativity, stereotyped behaviours, and restricted interests to inform diagnosis of Autism Spectrum Condition. *Due to PPE requirements as set out by COVID-19 guidance or if we are completing the assessment remotely, we do not calculate the scores from this assessment but use the information gather inform diagnosis of Autism Spectrum Condition. This is inline with the approach occurring nationally within diagnostic services. This assessment is completed with the young person or adults we are assessing independently from their caregiver where possible.
PDA (Pathological Demand Avoidance) or sometimes referred to as EDA (Extreme Demand Avoidance) is still a relatively new term in the medical profession and there is limited research about this. Medics and professionals like facts and evidence base, so some are still not sure about this profile. Others however, have experienced supporting someone with PDA and have seen the positive impact of adopting PDA friendly approaches for the individual, therefore more likely to be accepting of this profile. Autism Oxford UK recognise and have supported many people with this profile while also sharing this knowledge and strategies building with services and wider support networks.
Our knowledge on PDA is always growing and the evidence base is emerging.
The ADI-R is an extended interview designed to elicit a full range of information needed to help assess and diagnose Autistic Spectrum Condition. The interview focuses primarily on the three domains specified as diagnostic criteria in the ICD-10 and DSM-IV; language and communication; reciprocal social interaction and restricted, repetitive, and stereotyped behaviours and interests (behaviours which are rare in non-affected individuals).
The Ritvo Autism Asperger Diagnostic Scale- revised (RAADS-R) is a tool that can be used when assessing adults, who do not have a informant from when they were younger than 5 years. The tool is used as part of a interview to gain qualitative information around social interaction, communication, sensory and circumscribed interests that might be present before the age of 16 and now as an adult. It can also be useful in identifying other conditions and needs.
PDA (Pathological Demand Avoidance) or sometimes referred to as EDA (Extreme Demand Avoidance) is still a relatively new term in the medical profession and there is limited research about this. Medics and professionals like facts and evidence base, so some are still not sure about this profile. Others however, have experienced supporting someone with PDA and have seen the positive impact of adopting PDA friendly approaches for the individual, therefore more likely to be accepting of this profile. Autism Oxford UK recognise and have supported many people with this profile while also sharing this knowledge and strategies building with services and wider support networks.
Our knowledge on PDA is always growing and the evidence base is emerging.
We can here this in the wider community a lot, where people we say ‘well everyone is a bit on the spectrum’. This is not true. While we can share some traits and similarities as human beings, autism has its own distinct diagnostic criteria that has to be met to have a formal diagnosis.
Our autistic community have shared that when people make comments like this, it can be invalidating and unhelpful- while we understand some people make this comment to try and relate and from a supportive perspective, this is not how it is received.
We have met several people who have avoided seeking an assessment as they have heard others around them make a comment about everyone wanting the autism label and this being viewed as a statement or a ‘the in thing’. While we have seen a sharp increase in people seeking an assessment, this is not because it is fashionable or popular. People typically come to us for an assessment, either due to barriers to access their education or support they desperately need, or later in life, when they have felt isolated from the world and even been misdiagnosed with other conditions such as personality disorder.
It is absolutely vital when completing any assessment it is accurate and reflective of the experiences of the individual and it is inline with NICE and the diagnostic criteria.