Confused with ADOS assessment for my 12year old dd

[87SPD]

Hey there 👋

My DD has just had her ADOS assessment and I am now feeling so confused!

She is a very shy and anxious girl when in new situations especially when being directly spoken to so I knew she would be hard to get talking properly but she barely engaged at all! The assessor asked so many questions and tried to get her to engage in conversation and I was actually shocked myself at her lack of dialogue.

She was extremely fidgety, kept cracking her knuckles, chewing on her hoodie strings, looking down rather than at the assessor. She played connect 4 and didn’t say when she had clearly won so the assessor carried on and then laughed that she had won but my DD just stayed quiet.

Then she showed images from a book but with no text and asked what was happening, my DD didn’t respond to most but what she did was just literally what was on the page rather than telling a story. I was shocked at this part but I guess I shouldn’t be.

Anyway, the assessor spoke to me privately after and said she cut the interview short due to DD clearly being so anxious and not responding much. She said she feels she has what she needs though and doesn’t think there will be a requirement for another session with DD. She then asked about activity levels and broached the subject of ADHD and said this would be kept in mind during the next part of the assessment (ADI-R). She mentioned anxiety a lot. My DD is very switched on, struggles to concentrate and is always climbing/running around but also cannot discuss feelings in anyway at all and really struggles to form friendships or even have the desire to form friendships. She can be socially awkward too but has never shown any bad behaviour or pushing of boundaries she is the most obedient person I know!

I am confused now, does this sound like they are disregarding Autism? I feel that she thinks my DD ‘just’ has anxiety (I am not demeaning Anxiety I understand how debilitating this alone can be) but I was convinced she has Autism. Sorry for the eagerness I know I should wait for the official report but just taken by surprise now!

Any advice or similar experiences?

thank you for lasting this long! 🙏

I think you really have to wait for the report - hope that won't take too long. When my 14 year daughter first met the psychologist who would carry out the ADOS the initial meeting was cut short because her anxiety was so high and they didn't want to stress her further. She did get through the actual ADOS, although in your case perhaps the assessor had seen enough to make her assessment? I think it is shocking to see how our children are with other people. We missed seeing the signs of autism in our daughter because she was comfortable with us at home, but seeing her with the psychologist was different, and subsequently hearing of her experiences at school makes it all add up. My daughter gave such simple answers to questions and had to be prompted all the time. (I didn't sit in the actual ADOS though as she was a bit older). My daughter is similar to yours, she is also well behaved. She hates making decisions so tells me she would rather be told what to do, hence the obedience ! With regards to ADHD, my autistic son (19) has just been diagnosed and he was the best behaved child in the year at school. His issues are more to do with keeping focused. I think the bad behaviour myth throws people off making the diagnosis. I suspect my daughter also has it too as her attention span is so short. I could add much more if you have any more questions. Waiting for the results is not easy!

Wow our children sound so alike! I am really new to all this and trying to learn and educate myself as much as possible after years of knowing my DD was ‘unique’ and ‘quirky’ the transition into secondary school really made all of her traits even more prevalent.

My DD is the same in that she is so comfortable at home and I guess we have made many adjustments for her without even realising so when we see her in an environment out of our control has been very eye opening and upsetting.

Please may I ask you about contradictions with regards to ASD and ADHD? My understanding of ASD involves rituals and strict routines, my understanding of ADHD is inability to focus and obviously hyperactivity. My DD does have contradictory traits such as she has to have certain items in her room in a particular place, opens draws repeatedly, light switches, chews a set amount of times with food etc but she is also so disorganised and scatty, she can’t handle when her room is a mess but doesn’t know where to start in getting it ok again. We have to repeat instructions so many times before she listens (not through naughtiness) and so on. Is this similar to your experience?

sorry hope that makes sense! It really feels like the longest wait for the report and I’m worried as my DD didn’t engage much that they will pass it off as anxiety.

thanks again 🙏

About 70% of people with autism suffer with anxiety so I really don't think they will dismiss the possibility of autism at all. Of course I wasn't there but, from your description, it sounds like she ticked so many "autistic" boxes they are not in any doubt.

Reading ds2's report he obviously came across as far more clearly autistic during his assessment than he does when relaxed at home. He had a whole series of tics we don't usually see fi and he failed to pick up very clear conversational signals. It made me really see the disability in a way I don't often as we are so used to him.

@87SPD Having ASD and ADHD for my son is very contradictory, the autism makes him want to obey people's rules, but similarly he wants to do things his own way (ie not obey other people's rules). He can find it hard to focus because with ADHD he has so many things running through his head at one time, he can hyperfocus on his favourite interests but he can't just make it happen when he needs to. Because he has so many things going through his head he can't relax easily although the autism burnout exhausts him. He tends to relax by playing a video game and listening to music at the same time. In fact, he listens to music all the time because it helps to focus him rather than his thoughts going all over the place. Autism affects him where he gets very focused talking about one topic and you can't get him away from it, but also ADHD can mean his thoughts jump all over the place! He manages his life (now at Uni) by planning his day, his study, his gym timetable, anything and everything is planned on an excel chart, and this is partly how he has managed the ADHD part, as well as satisying the autistic part of him where he needs to know what he is doing that day and at what time.
Similar to you, we had always made adjustments for our children without really knowing that their behaviour wasn't typical. ie avoiding crowded noisy places.
With regards to the messy bedroom, I must admit I could never cope with my daughter's mess. We had so many arguments when she was younger, however we now understand it is because she has processing difficulties - she sees the problem as a whole. We have now learnt to break everything down into sections - tidy this bit, then that bit (seems obvious but she saw it as one big insurmountable job). They both learnt to have a home for everything in their room so it was easier to put things away - and to find them again! Both now have quite tidy bedrooms! Neither can really process verbal instructions very well. Break every task down into smaller steps and even write them down.
Keep talking to her about what she finds difficult - or what you notice she doesn't do very well. When you understand what the problem is, it is easier to come up with solutions. ie My daughter just wasted her days in the holidays and after discussion it was because it was easier for her to sit doing nothing than decide what to do with her time, so I typed her out a timetable to give her a routine in the mornings, then it became a habit. As I said, she needs to be told what to do in order to do it.
I imagine it is the beginning of a journey for you both so just keep observing, listening and you'll work out how to overcome the issues. Over the last 20 months I'd just started to understand my son's type of autism and then discovered my daughter's - they are both very different! I would also advise finding a local support group - we have made new friends and it has been a big advantage with coming to terms with it all.

Anxiety, poor eye contact, very literal - my guess would be that if the assessor's seen enough to suggest dd is autistic. My DS was diagnosed in 30 minutes aged 10.

Thank you, really appreciate the replies and so enlightening to hear such similarities!

@VMJ1 what you said about a timetable is actually such a good idea and something I really think my DD would respond well to! Like your DS she appreciates organisation and routine but at the same time can be so scatty with a million thoughts going through her mind. A timetable for her weekends might actually help her to relax knowing for sure what is coming up! Thank you so much for sharing that! Also totally understand about processing the tidying up. Good to hear your DS is doing well and at uni, he clearly has great support around him and is understood and that’s exactly what we want for our DD.

@Choconut thank you - I am so nervous that they will say it is anxiety but they haven’t yet done the parental interview so I suspect the ados followed by our account of her other issues such as sensory/lack of emotional literacy/rituals/no desire for friendships/obsessive interest etc they will hopefully join the dots!

@Porcupineintherough thank you, it really is so eye opening seeing them with a stranger or being asked direct questions from the outside looking in, my DD could not sit still at one point I thought she was going to break her fingers from bending them back so much poor thing!