This is a guest post written by Jade Page, one of our trustees. It first appeared on her blog, The Autism Page
I didn’t know what to expect when we went to my boy’s ADOS assessment. We had waited a long time to see the ‘social communication expert’ in our area (BaNES). So I thought it might be helpful to share our experience of ADOS for those about to have an assessment.
Don’t worry there is no need to prepare for ADOS but its always nice to understand what its all about.
What is ADOS?
ADOS stands for – Autism Diagnostic Observation Schedule. Essentially ADOS is a test to see if a child is displaying traits of autism. It is a semi-structured assessment looking at social interaction, communication and play. The assessment is a step in the process to get a diagnosis of autism
There are different modules used generally depending on the child’s age or language ability. For example if you see ADOS – 2 or ADOS – 3 the number refers to the module used.
Getting an autism diagnosis
Getting an autism diagnosis is different for each person but ADOS is a common tool used with young children. In our case it was used alongside a social communication assessment, other speech and language reports, a common assessment framework (CAF) and standard development reports from nursery and our Health Visitor. The ADOS test was just one step towards my son’s diagnosis.
We were first referred to speech and language in June. The professionals we saw kept saying we should see the ‘social communication expert’, I had no idea what they meant. It wasn’t until September that one professional explained that it means they would assess my son for autism.
It wasn’t until the following February that we got an appointment to see the social communication expert where our ADOS assessment took place. We then waited until April to see our Paediatrician who gave us a diagnosis for my son.
How can I prepare for the ADOS and Social Communication Assessment?
You don’t need to do any preparation for an ADOS assessment. Do read any information sent to you, this is usually just information about when and where the assessment will take place.
I know how hard it is to think about your child being assessed but the best thing you can do is be normal. Answer all the questions honestly and let your child respond as they naturally would. The point is to see if your child has signs of autism. If you are not honest, the person doing the assessment may get the wrong result which in the long run doesn’t help anyone.
The letter we received was for a speech and language appointment and a social communication assessment. The letter didn’t state ADOS on it – this was explained at the appointment. It said to allow 90 minutes which was about right.
It helps to have someone with you that knows the child well. I went with my husband. You can both answer the questions even if you have different opinions. Unfortunately I also had my three month old baby with me which I wouldn’t recommend, lucky for us he slept through most of the session. I would suggest getting childcare (if possible) for any other kids as the focus needs to be on the child being assessed.
What happens during the ADOS assessment?
The person doing the assessment is often a speech and language therapist; it may be someone you have already seen. The assessor should explain what will happen before they start. The assessment is a play based observation of a child’s social communication skills. It explores the child’s use of language and communication, two way social interaction, imagination, behaviours and interests.
It was a while ago now but I remember being nervous and finding it all a bit stressful (probably didn’t help that I was full of new baby hormones at the time). I think it is natural to be scared and uncomfortable about any assessment related to your child. Having said that the assessment we had was not particularly formal. The lady who did our assessment was clearly used to dealing with stressed out parents.