I didn’t know what to expect when we went to my boy’s ADOS test. We had waited a long time to see the ‘social communication expert’ in our local area. 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 – Autism Diagnostic Observation Schedule
ADOS is a semi-structured assessment looking at social interaction, communication and play for individuals suspected of having autism. It is used as an assessment to assist with diagnosing autism.
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.
What should I do before ADOS & Social Communication Assessment?
Nothing, just make sure you have read any information sent to you, you know where you are going and when it is.
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. The point is to see if your child has signs of an Autistic Spectrum Disorder (ASD). 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, it 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 took my husband, this way 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 & Social Communication Assessment?
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.
Essentially the session consists of chatting with the assessor who also watches and plays with your child. It includes observations relating to communication, difficulties with social interaction and restricted repetitive behaviour along with communication difficulties.
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.
The assessment took place in a room at the speech and language unit. The room was set up with a small table with chairs for the adults and a few toys dotted around. Over the next hour and a half we chatted with the assessor as she asked questions about our son. She asked questions about his eating habits, sleep pattern and interaction with others. She also asked about our concerns, what our son enjoyed / didn’t enjoy – all questions that we could easily answer. At the same time she was watching our son, how he interacted with the toys and us. There was also a snack section where she was looking at how he indicated choice.
Throughout the session the lady would make attempts to engage with our son. She was speaking to him, attempting to join in his play and attempting early social games like peekaboo. Age appropriate toys were brought out like shape sorters, cars and dolls. Exciting things like bubbles and light up toys were used to gain my son’s attention and see how he asked for more (or walked off). A doll was used to do more imaginative play like giving her a wash and brushing her hair.
I remember thinking how well the session had gone with my son playing with all the toys and engaging with her (she was clearly used to working with children on the spectrum). I was really struggling at home, I would try and play with him only to have him turn his back so he could play alone.
What happens after ADOS & Social Communication Assessment?
We were really lucky, towards the end of the session the lady conducting the assessment explained that she felt my son was on the autistic spectrum. She talked it through with us before saying she would refer us to the paediatrician recommending he get a diagnosis. I remember her asking if that was OK and I wondered what she would say to parents that say no?
The assessor explained that she thought our son would need assistance now but she expected he would live a normal happy life. I later found out she had said the same thing to other mums, to be honest when you are told your child has autism you do need someone to point out that it is OK.
My son got a high score on the ADOS assessment so it would have been easy for the assessor to make her decision there and then. I am sure in many cases it is not clear cut and they may want time to come to their decision. Some local authority areas may have a policy of not revealing the score or giving any information until they have written up a report. I think it was then a couple of weeks later we received a letter with the full report following the assessment.
The report we received detailed the session and her assessment in the following areas:
Social use of language
Play and social imagination
Rigid and repetitive behaviours
Sensory seeking behaviours
In the report conclusion section she highlighted significant language and social communication difficulties alongside rigid behaviours. It also included her recommendation that he be diagnosed with an autistic spectrum disorder. Finally it stated that she had made referrals to the paediatrician and the complex needs speech and language team.
What does the ADOS Score mean?
Following the ADOS assessment you may be told your child’s score although it doesn’t really matter if you get it or not. Essentially the main aim of doing the assessment is to work out if your child has autism or if the difficulties they have are for another reason.
A score of 12 or above indicated moderate to severe concern of ASD, my son’s score was 24. When I received the report and our score I Googled ADOS to see what this score meant. I got all worked up as I realised it was a very high score. I emailed the assessor with some questions after we got our report, she was very helpful in clarifying a few points for me.
The score is actually just an indication of difficulties that may indicate autistic spectrum disorders. So a higher score is an indication that it is more obvious that my son has autism. It means he clearly displayed the traits they were looking for through ADOS.
ADOS is one tool towards a diagnosis and it worked well for us but may not help for others, many kids perform very differently one day to the next and in different settings.
The ADOS classification includes a comparison score, this is so the results can be compared with children of the same age that don’t have communication difficulties.
Ask questions to the professional carrying out your assessment, they are best placed to explain what they are doing and what their report means.
How long does it take to get an autism diagnosis
Every diagnosis journey is different. Also the standard route is likely to be different depending on where you live. For many reasons its not possible to give you an accurate timescale. However I can tell you it took us 11 months from initial speech referral to diagnosis of 11 months. Just based on discussions with other parents and various autism Facebook groups I would say the average wait is between 1-2 years for an early years diagnosis.
You may also find my posts about Early Years help, using visual aids and speech and language useful. You can also get my free quick guide to challenging behaviour when you sign up to my monthly newsletter here.