It may be shocking to be advised that your child may have ASD in their teen years, and many parents feel a sense of guilt that they ‘should have known’ or sought help for their child sooner. However, it is important to realise that not everyone with ASD is diagnosed at a young age and this is could be for a variety of reasons.
For example, public knowledge and understanding of the condition has only begun to grow in recent years, so there are many teenagers today who did not have access to diagnosis when they were younger, or who were misdiagnosed. Of additional note, ASD is spectrum condition, and there is a significant proportion of people with ‘high functioning ASD’ who may have had the feeling that they view the world a little differently to their peers, but who rarely had problems with schoolwork and therefore their difficulties were never picked up as ASD by parents or teachers. Another significant factor to mention is gender; males are around four times more likely to be diagnosed with ASD than females. While figures do seem to show that ASD is genuinely more prevalent in males, recent research has shown that females on the spectrum may present differently to males and/or may tend to ‘mask’ the symptoms more efficiently leading to misdiagnosis.
Whatever the situation it’s crucial to remember that the absence of a recognition of ASD in the younger years does not indicate a ‘failure’ on behalf of the parents or child.
What to expect as part of the Autism Spectrum Disorder Assessment
ASD is diagnosed by gathering evidence from a child, their family 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 looks like ASD or if the symptoms can be better explained by something else, for example, anxiety or learning difficulties.
In order to provide a ‘gold-standard’ service, we have chosen to use a range of clinically recognised tools. Below is a guide of how our assessments typically proceed:
Stage 1: Initial Consultation with Parents/Guardians
The first stage of our assessment process involves an initial consultation with our senior clinical psychologist. The purpose of this consultation is to give you the opportunity to meet with a member of our team to discuss your child’s presentation and provide some details about your child’s developmental history. Where applicable, both parents or guardians should attend this meeting which will last approximately one hour.
Following this initial consultation, if full assessment is indicated, we will provide you with a questionnaire to give to your child’s nursery/school to fill out and return to us. We will also need to contact the school/nursery to verify information. This information is vital to the diagnostic process and is essential for us to have prior to us meeting your child.
Stage 2: The Core Assessment
As parents/guardians, you will meet with one member of our team to complete the ADI-R. Currently this is being conducted via Zoom. This is a standardized interview which includes in-depth questioning relating to your child’s early years and developmental history and has been proven to be highly useful for diagnosing and supporting individuals with ASD. It is a gold standard assessment tool and is recommended in current national guidelines.
Your child will also attend the practice to complete the ADOS-2 assessment for ASD. This is a semi structured, standardised assessment which is designed to identify behaviours that are typically related to a diagnosis of ASD. This is also a gold standard instrument recommended in current national guidelines. This play-based observational assessment involves your child playing with specific toys and undertaking various tasks with a member of the team, whilst their interaction is being observed by another team member.
Stage 3: Diagnosis
Following the completion of these assessment processes, the team meet to discuss the young person’s case and the information that has been gathered during the assessment process. The information is mapped onto the DSM-V criteria for Autism Spectrum disorder and a decision is reached regarding diagnosis. If all information is available, the team would hope to feedback to you within 14 days of the clinic assessment.
In some cases, further assessment may be required if it is determined that further clarification and observation would be useful to the assessment process. Examples include a nursery/school observation, an additional speech and language assessment, or a review by a paediatrician or child psychiatrist. If this is the case then the rationale and timing for the further assessment will be discussed.
Report & Recommendations
Following completion of our assessments a written diagnostic report will be completed. We will aim to have this report finalised 6-8 weeks after completion of our assessment.
Stage 4: Post-Assessment Support Meeting
Whether or not your child received an ASD diagnosis, we understand that the whole process and outcome will have been challenging for you as a family. Receiving a positive ASD diagnosis for a child can feel overwhelming, and each individual will have differing emotions following the diagnosis. Equally, parents of children who do not receive a diagnosis and where the origin of their child’s difficulties appear to point elsewhere can also feel overwhelmed and helpless as to what to do moving forwards. For this reason, we have structured in a ‘follow-up’ meeting, approximately one month after your child’s assessment. This meeting allows you the opportunity to go through the report again if necessary and get clarity on any outstanding queries. Whatever the outcome of the diagnostic assessment, you will be provided with practical resources and recommendations for local services and support groups that may be helpful for you and your family.