ADOS for a teenage girl

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Dd is 15 and a half. She's been struggling a lot lately with social anxiety and her OCD and other behaviours - self-harming, anxiety and depression have reached an all time high. She has now not been at school for over 3 months and we are in the process of trying to get her a place at a pupil referral unit which has about 30 kids in total between age 11 and 17. It's been a truly awful 18 months - 2 years and I've been seriously afraid I would lose her at times. She's recently started taking an anti-depressant but we haven't seen any positive effects from it yet.

During her various assessments at CAMHS, it was suggested that she may be on the autistic spectrum which is something I had never considered before - I still have uncertainties about it although having now read a lot more about it I can see that she certainly has traits suggesting autism.

She has an appointment for an ADOS on 19 June and the letter that comes with it talks about playing games and being observed - surely the wouldn't do that for a teenage girl? Does anybody have any experience of what the test might consist of for someone her age?

I'd really appreciate some advice if anybody has any ...

My dd had ab ADOS assessment a week before her 14th birthday. The assessment was done by a speech and language therapist and I watched with a doctor through a one way window - I did not know I would be watching and dd did not know until afterwards - she was absolutely livid and felt she had been deceived. I don’t remember the assessment in detail but I do recall she had to look as pictures and describe them, including suggesting what they might be feeling, and the final task was to give her a box of small world toys and she had to make up a story about them. She did find it all a bit ‘young’. Afterwards, she went home with my husband and the school SENco joined me, the doctor and the speech therapist to share information - we had all completed questionnaires before the assessment. It was a one-stop diagnosis only clinic - they assess and diagnose but no ongoing support of any kind. The diagnosis was given on the day and in writing a few weeks later.

In case it is helpful for you to know, the school encouraged us to have the formal assessment as they felt it would help dd understand herself better. Subsequently, we found out that dd only agreed (she knew what it was for) so that she could prove that she did not have ASD! When the diagnosis was given, her already fragile mental health deteriorated and we have had a very traumatic couple of years - self harm, eating disorder, massive anxiety problems, attempts at suicide - and she has been an in patient in an adolescent mental health unit several times. She is 17 now, doing much better, with some understanding of herself, and will be returning to full time education in September. I am not suggesting that any of this will happen to your dd but I would prepare her well and make sure she understands.

Good luck! Xx

Thanks TAmum we’re pretty much where you found yourself with your dd after diagnosis already.

Dd is completely uninterested in whether or not she gets the diagnosis although she does look very scathingly at times on the whole idea of autism.

I am just curious as to what they will do or ask her. She is not very communicative - more like a surly teenage boy than anything I can describe. Emotions, games, role play, trying to fool the assessors etc is miles away from her mind. She never remembers what I mean when I say ASD.

It sounds great that your dd is well enough to return to school! We have been hoping for that too. If you don’t mind me asking, what has she done for education whikst oit of school?

She spent most of the autumn term of year 11 in an adolescent mental health unit, went back to school and deteriorated so was readmitted. She would then have gone back to school after Easter... as GCSEs started... all the professionals agreed returning to school at such a tense time would never succeed so she spent the summer term in the hospital school attached to the unit. She started A Levels in a new school and deteriorated again so was readmitted... she is home now but remaining at hospital school until July.

Do you have an EHCP? I applied for the EHCP myself when she was first admitted and succeeded straightaway - I had put off applying as I thought it would be impossible to get an EHCP for a 15 year old! It has been invaluable - the facilities they know about that we might not and the knowledge they have. My dd will restart A levels (academically she is v strong) in September in a specialist independent school with all the support she needs and only about 30in the sixth form. It will be funded by the EHCP, as will transport.

I know it is unusual but we have had fantastic support from CAMHS - we are in London and there is a dedicated neurodisability team, who have been amazing. Dd is v positive about restarting in September, which is good as she cannot be a camhs patient once she turns 18 and nor can she be readmitted to the unit!

I do feel for you - I wouldn’t wish our experience of the last couple of years on anyone! Xx

We don’t have an EHCP but we might I think if she gets the ASD diagnosis? Education-wise I don’t know what she’s realistically going to achieve in terms of GCSEs - probably English language and art. But I’m not too bothered - I’m more bothered about getting her out of the house to do something as being at home all the time is not helping her at all.

Just to go back to my original question though - is there anything I can tell her about the ADOS? They say it will be videod and that she will be asked to complete some puzzles and games and play imaginatively with toys. To be honest I would think that most teenagers might hate that regardless of being on the spectrum or not ...

I think a video was made. There were pictures dd had to describe including how people might be feeling, she had to tell a story from a series of pictures, she thinks she had to do a jigsaw puzzle and we all remember the final task - the box of objects she had to make up a story about. It was all very ‘young’ and not what a teenager might expect to do! The speech and language therapist was very good and explained that the assessment was aimed at at younger children - she did everything she could to put dd at ease and encourage her. I wonder how adults are assessed and if that might be more appropriate at 17?

I had my ADOS at 46 and although there are 4 different 'modules' depending on age and verbal ability, many of the activities are exactly the same across them all (as well as my own I was present when my ds had his ADOS when he was 6). It is best that she is not prepared for it as it might affect her responses.

Thanks all. I wasn't planning on preparing her as I don't think I've ever had any success at preparing her for anything so far in her life! I was just curious to see how they would assess someone who is not a child and not an adult, taking into consideration that there will be 'teenage' resistances coupled with possibly ASD resistances.

Dd's speech and language isn't bad, nor is her perception of pictures or ability to make up stories. What she struggles with are sensory things, organisation and socialising but I presume that the tests cover these areas in subtle ways?

Have you had forms to fill in? I had to complete very detailed questionnaires and so did the school. The doctor and speech therapist had both seen the questionnaires before the assessment. After the ADOS, the school SENCO came and we had what they called ‘an exchange of information ‘. The speech therapist picked up lots of small things that were relevant during her assessment - I think even refusing to engage completely would mean something to them. My dd also has ADD, which was diagnosed a couple of years earlier, and there was information from that doctor too. Our gp was asked but had never met dd so felt she couldn’t contribute. I watched the assessment and wasn’t sure there was enough to give the diagnosis but they were sure.

We filled in some detailed forms with dd's previous CAMHs counsellor, the one who suggested dd be assessed. The school have also had a series of forms that they have submitted.

I've always thought dd had some ADD but honestly until the last 18 months - 2 years, nothing was bad enough to be majorly affecting her life except the OCD. It's been secondary school and the change of social life, increase in need to be independent, harder academic work. She just hasn't coped with it all, she's come unstuck. Hormones must be part of it as well.

She's self-harming, lost tons of weight as she barely eats. She can't sleep at night, she has no friends now at all and spends her days in her room, looking at rubbish on Instagram or drawing which she's amazing at. She listens to a lot of music too. She seems further removed from reality than she ever was. Her mood is low, anxiety high, no motivation to do anything. She hasn't showered now in about 2 weeks for instance and she used to be very fastidious.

I'm concerned too that the Sertraline is actually making her worse rather than better.

It's absolutely completely horrible to witness and to feel so utterly powerless.

It is terrible to watch and terrible to feel powerless - I am her mother, I fix things and I couldn’t.

For my dd, the increased social expectations and more complicated interaction were the things she couldn’t manage. I think hormones had a massive impact - she has matured a lot in the last year. One of her doctors told me that teenagers with ADD or ADHD tend to be a year to 18 months behind their peer group emotionally and that has been true for us. Friendships have been and are the biggest issue here - dd is desperate to have friends and a normal social life but finds she can’t manage it or doesn’t enjoy it. I am having to learn to adjust my expectations, try and work out what is achievable and help her adjust her expectations. She has a small circle of friends, all of whom have similar problems - good because they understand each other but bad because we know she really needs ‘normal’ behaviour modelled around her, as that helps her know how to behave! It is very hard.

Sending you lots of love xx

TAmum thank you so much for your input and responses. Everything you're describing is really familiar to me and also the terrible sadness that dd too wants to have friends desperately. She doesn't currently have a circle of friends - there's the daughter of a family friend but they are so different and I often think the other girl 'tolerates' dd because she's just a really lovely friendly girl and our families are close. I'm really hoping that if dd goes to the pupil referral unit she will meet some similar people / some friends.

Much love to you too xxx

PS I'm also a 'fixer' and this has been so so so difficult.