Understanding the autism assessment pathway for children and young people
Please carefully read the following information as it contains important information about your child’s pending autism assessment including the steps involved and possible timescales.
We have collated this information based on common questions we get asked. We aim to be as open and transparent as possible whilst reasonably setting expectations.
Please review the following information before contacting the assessment team as the answer may be below.
About the team
Barnsley Autism Assessment Service sits within Community Paediatrics, a part of Barnsley Hospital NHS Foundation Trust. Our Autism Spectrum Disorder Assessment Team (ASDAT) offers a specialist assessment and diagnosis service for children under the age of 18.
As a specialist medical assessment service, we are unable to offer support, training or interventions for autism. Our role is to focus on assessing the child’s difficulties against the DSM-5 criteria for diagnosis whilst ruling out any other medical factors which may be causing these.
Is the assessment compulsory?
No – you and your child have the choice.
If you feel that your child does not need to be assessed or if you believe the outcome will make no difference to your child’s development, then you can withdraw from the process at any time.
By consenting to the assessment, you are giving permission for Barnsley Hospital to share relevant information and reports with external organisations in order to support this process.
Without this information we may not be able to proceed with an assessment. A copy of the assessment will be kept on your child’s hospital record.
What happens now my referral has been accepted?
You should have now received a letter from the team which is your official confirmation that your child has been accepted onto the assessment pathway. From this point, it will appear to go quiet for a while - this is totally normal. During this time, our team will be busy ensuring your child is added to all the relevant pathways and waiting lists needed to move through the assessment process and ensuring that the relevant paperwork is in place.
The assessment process is lengthy by nature and is completed in various stages as detailed further down this page. There may be a delay between each stage of the assessment, again this is normal.
At this stage, we are unable to confirm any dates for appointments. Dates are only confirmed closer to the actual appointment time and we will be in touch in due course.
In what order are patients seen?
As most children accessing our service have some form of difficulty or need, the assessment is carried out according to the date that their referral is accepted to ensure they are all assessed fairly. The severity of need and the impact on the child’s family does not change the place of a referral on the waiting list.
What are the stages in the assessment process?
The assessment process takes place over a period of time. There will be delays between each step of the process. However, it is important to understand that this doesn’t impact on the overall duration of the assessment.
The assessment process may include:
Step 1: Initial Autism Assessment Clinic (IAA)
This is where you and your child will meet with the Consultant Paediatrician who will be overseeing your child’s assessment. At this appointment, we will obtain a history from yourself including details about pregnancy, birth, early childhood development and any family history. The consultant may also wish to carry out a physical examination of your child to rule out any other factors which may be causing your child’s difficulties, this is normal. This is your opportunity to share your concerns and to discuss what you feel your child’s difficulties and strengths are.
*If your child is already known to a Community Paediatrician for other conditions and it is them who have requested this assessment, this step may not be always necessary.
Step 2: Independent Communication Assessment (ICA)
This assessment is normally carried out towards the final stages of the assessment and is typically conducted by someone who has had no prior involvement with your child’s assessment, usually by a Specialist Speech and Language Therapist (SALT). This may involve a parent/carer telephone interview, a school/nursery visit or a clinic appointment. This is not a typical speech and language assessment. Instead it will explore how your child communicates and interacts socially with different people and in different situations.
If your child has had previous involvement with community speech and language services, the Specialist SALT may link with your child’s named therapist for their opinions and findings.
Please note: This stage may not be required if your child’s Community Speech & Language Therapist has already provided the detailed clinical evidence required under the Autism assessment diagnostic criteria. The professional carrying out this step will contact you independently to arrange this, the ASDAT team are unable to advise when this is likely to be.
Step 3: Update from Educational Setting
As we nearer the conclusion stage of the assessment process, we will contact your child’s educational setting for an update as things may have changed since the referral was submitted. If your child is known to other services, we may also contact them at this point to obtain information and reports which may be considered as part of the assessment process. It is important to let us know if you child has changed school to avoid unnessessary dealys.
Step 4: Autism Assessment Conclusion and Feedback Meeting (ACFS).
This is normally the final stage of the assessment process. The Consultant Paediatrician who has been leading the assessment will review all the information obtained throughout this process and using a nationally recognised criteria for diagnosis, a decision will be made as to whether your child meets the criteria for diagnosis. Schools and Nurseries are normally invited to this session along with other key professionals.
Parents and carers will then be invited to attend part of this meeting to discuss the outcome of the assessment and what happens next. Unless otherwise requested, we ask that children are not brought to this meeting.
*Please note, from time to time we may need to alter the process shown above however, where possible, this will be communicated to you in advance.
Following the conclusion of your child’s assessment, a follow-up appointment may be offered to see a paediatrician, specialist pracitioner or specialist nurse before being discharged from the autism assessment pathway. If at this stage the clinician feels further follow-ups are needed to explore other issues, your child will be referred across to our Community Paediatric Clinics. Plesae note, there may be some cases where a follow-up is not required and your child been discharged following the conclusion meeting.
Other forms of assessment
There may be occasion when your clinician feels the need to undertake a different type of assessment. One of these assessments is called the Autism Diagnostic Observation Schedule 2 (ADOS-2) assessment. However, this is not required for every child and the paediatrician will decide if this is required.
Time scales (assessment lengths)
Due to the demand on our service and the complexity of the assessment process, it can take around 20 to 24 months to complete this process. However, in some circumstances this may take longer. This time scale may vary depending on the demand on the assessment service at any given time.
It is important that you and your child attend appointments where possible. If you are unable to attend your appointment, please let us know as soon as possible. However, it is important to know that this may delay the assessment process as clinics are normally full and you may have to wait some time, for the next available appointment.
Failure to attend a planned appointment or frequent cancellations are likely to result in your child being discharged from the assessment pathway without it being concluded. If this happens, the referral and assessment process would need to start again from the beginning, this includes the need for a re-referral to be made, therefore delaying any possible diagnosis.
Changes to appointments
Unfortunately, there may be times where the hospital needs to cancel, postpone or re-schedule an appointment. This may be due to sickness within our team or because we are still awaiting information from other professionals or organisations who are contributing to this assessment. This is not something we do unless we really have to and we will do everything we can to keep the assessment process moving.
Keeping your details updated
It is important that you let us know if you move house, change your phone number or your child changes schools as failure to do so could lead to a delay in appointments or assessments.
All our appointments are now sent using the NHS Appointment Portal direct to your phone so please let us know if you think we may have an old number on record.
Contacting the team
We hope this page has provided a clear understanding of what the assessment process may look like and answered any questions you may have. However, should you still need further information about this process, please contact us using the details below.
Please remember, we are unable to give you any dates at this point, these will be sent to you in due course (near the time of the appointmnet).
Support, advice and interventions
We are a Specialist Assessment and Diagnosis Service. Our role is facilitating the assessment for autism; we do not offer an autism support service.
We have an online resource base for families which contains links to services and resources for difficulties such as anxiety and the impact of autism on sleep.
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