confused about how assessment is going

[pleasegivemestrength]

Hi all! I dont post much but was wondering if anyone here understands which way ds2' ASD assessment is going. I am very confused myself.

ds1 has Asperger's, and ds2 has suspected autism. even a specialist autism team, who is in our house every weekday afternoon, supporting us and working with ds1, is certain ds2 has autism. we got referred for assessment and had the thrid appointment today.

we are in Germany, so assessment may be done slightly differently here. First appoinment was just a chat with me.

Second appoinment (last week) was a non-verbal IQ test and then the psychologist also did a language comprehension test with him. to my amazement the IQ test came back above average, and the language comprehension test came back within normal range. It is the second test which left me . EVERYONE had assumed that ds2 does not understand much and doesnt get the most basic of concepts. The leader of the above mentioned autism team once said she thought his S&L development was about 9 months delayed (he is 3.5 now btw). Often when you ask him a question, he will not answer. or he will give ANY answer. or he will just give you either a blank face or a lovely smile without saying anything. or he will just start talking about something else, seemingly ignoring the question.

During the test the psychologist did have to repeat everything at least twice before ds2 reacted to it. but I am sure it's not his ears that is causing the problems, as he repeats absolutely everything ds1 says, and in general shows direct as well as delayed echolalia.

Anyway, today we had another appointment, which was the ADOS assessment. she used module 2, which I was a bit surprised about, but anyway she said that she thought his interaction was quite good. I have to say, he did work really well with her, no refusal, not too bad with transitions from one exercise to the next. But I dont really see how she thought that the interaction was good - he only reacted to what interested him, only answered when he felt like it and otherwise started his own question about something. role play or pretend play I didnt really thing was good at all, but then I am not the psychologist. She did videotape the assessment, so I am hoping that she will watch it and perhaps see what I saw too. ds2 does have this gift of being able to bewitch anyone with his huge blue eyes, massive grin and charm :)

I am just so confused? where is this assessment going? what do you think about the language comprehsion test result? any ideas whatsoever would be greatly appreciated.

I was absolutely certain (and still am to be honest) that ds2 has autism. pre-school is very unhelpful, and if I dont get the diagnosis he will never get the support I believe he needs. if he refuses, they let him be and call him stubborn. if he lies on the floor, just looking at a toy car or watching the ceiling, they leave him be (poor boy must be tired...). pre-school makes me feel and look like a hysterical mum, making up problems where there arent any. Obviously I dont want a diagnosis if it's not the right one. what I do know is that ds2 is not normalk and that he does have "problems"...

thanks for reading!

Hi pleasegivemestrength
I am no expert on this, just a primary school teacher of eight years, but I have worked with lots of autistic children. It isn't usually the case (this is just in my experience) that AS children have average or higher language comprehension, but it doesn't rule out AS as far as I am concerned. I have worked with autistic children who are selectively mute and decide what and who to respond to, who actually have very good comprehension and average or higer IQs. As far as I am concerned (and the people I work with) it is the behaviour that is the signal, not the ability level.

His results so far wouldn't rule him out as AS for my school, I hope that helps and I have got my fingers crossed that you get the help and support you need. In my experience the AS children I have worked with have been some of my favourite and most memorable kids, but I wouldn't have been able to cope without support and the right diagnosis. And that is just for 7 hours a day!

hello quicksie,
thank you so much for taking the time to reply! what confuses me most is not that his scores were above average and that his comprehension seems to be fine, but the fact that everyone inclusing me had so far assumed that he DOESNT understand much, because from looking at him and watching him, that is the impression you get. the psychologist agrees and seems a bit confused about this herself.

also, all other behaviour I notice at home was extremely toned down at the assessment. same at pre-school I guess who I making me believe that it only me who sees problems. whereas ds1 gets very aggressive and shows challenging behaviour both at home as well at pre-school, ds2 is very quiet and just takes himself away into his own world. Thus he isnt a bother to anyone, if you see what I mean. and his severe temper tantrums he saves for home as well, unless there have been obvious changes to routine or surroundings at pre-school.

You sounds lovely and very supportive of your pupils, like the sort of teacher I am hoping my dc will have :)

sorry I just re-read and saw your comment about responding whne he feels like it. That is certainly sometimes often case, I think. But in general you still get the imression that many things he does not 'get', even simple things have to be repeated several times. Psychologist mentioned something about maybe there is a problem not with hearing but with processing the heard informtion? But she also said he may be a bit young testing for that...

Hi there! Sorry I didn't reply sooner, I have been away over half term! Bloody teachers eh...
He sounds interesting! I wish I had a pound for every parent of an AS child who felt that they choose where to behave...When we have an assessor from the local authority in, and really want them to 'play up' so we can get them the funding and resources they need, they invariably become like different children! I have had a lot of AS children who have severe behaviour at home - to the point of a parent having to hide the door keys, as her child would get up during the night and unlock and open all the doors, cut the plugs of the tv to stop it being switched on at all hours - but in school, no problems with those things. I think at home, that is where the true behaviour comes out, as AS children can be acutely aware of school rules and expectations and fall in to line. At home, where rules are (rightly) more relaxed and children can be themselves so much more, you see a difference! I know it can be hard, especially if school staff tell you that children are very well behaved at school - I try to avoid this as it just makes parents feel like they are doing something wrong, which they definitely are not. It isn't our skill that makes a difference, it is their understanding of expectations in school and a wish to conform or at least to comply!
It could be something like a processing delay. I have experienced that too and it can be alot harder to get diagnosed. I had a child in my class last year who is extremely creative, great reader, sociable...but completely stuck when it comes to verbal instructions! If you ask him to do something, he will look blankly at you and it seems like there is a block...write it down, write a list of instructions, he will do them all and tick them off as he goes! He can keep up with verbal games, memory games etc, but there is a block between verbal instruction, processing and action. A bit like some children have with dyscalculia, they can use numbers when written down, but not when spoken, or vice versa.
When you think about it, the fact that we can hear, understand, follow instructions, act on verbal commands etc. is an absolute miracle, let alone making funny shapes in to meaningful words and sentences! I think the kids who struggle are actually the reasonable ones!
I will speak to our SENCo at school and see if she knows more about this, she might be able to signpost us to some experts out there.

Thank you very much for your lovely comments, I do my best...sometimes it works, sometimes I come home feeling like I could have done more, or didn't get through to all of them. I think the best teachers are constantly feeling guilty and like they don't work hard enough! It's the ones who think they are great that you have to watch out for!

Hello again! We've had another appointment since and the psycholigist also mentioned something re processing, but also said he would be too young to assess him further wrt to that.

He was very well behaved during the ADOS. I did think there was some VERY obvious behaviour, but he does disguise it very cleverly with his charm :o It was videoed so I am hoping that she will pick up some more bits when viewing it.

This week Friday I have the parent interview thing. I doubt she will give me a yes or a no by then. ALso, this past week I have been taking short videos of ds2 to show some of the behaviour he displays at home.

Will let you know what Friday brings. Thanks for checking in on me again :)

No problem! I hope you get the support you need, and if I can do anything to help I will do. I had a quick word with our SENco this morning as she was covering my class for me! She said that with processing delay it is hard to diagnose and tends to be done on a collection of evidence over time. She is digging out some info for me so I will let you know what turns up!

Hi quicksie! Just wanted to give you a brief update ... Ds2 has now received a provisional dx of atypical autism/ aspergers. Provisional because he is so young and I guess his symptoms aren't severe enough to give a full dx. Psych was lovely though and said we should be able to get the same support and provisions as with a full dx. She wants us to get a 1-1 for his pre- school and also for extra help at home. Possibly also salt.

She is still unsure of the cause if his language problems so on tues we are taking ds2 for a full paedoaudiological assessment and see if that comes up with any obvious problems.

I'm glad assessment is almost finished now. I had forgotten how stressful it was with ds1. And at least we are already in the system and should get provisions approved relatively quickly- fingers crossed.

I just hope pre- school will improve their know- it- all attitude. The psych will go to talk to them do hopefully that will help. Otherwise we'll have to somehow find another suitable pre- school for him.

Thanks again for your posts and advice :)

That is great news - it is such a relief when someone takes you seriously isn't it! Hopefully the pre-school will sit up and listen to a professional. You might not get an apology but if the support is put in place that is a big step forward! If they don't play the game, I would complain about them to whoever will listen, because this will happen to other parents. In the UK it would be OFSTED but I am sure there is a similar body in Germany.

Hopefully it won't come to that, it is amazing how having an official title can change things! Even though the parent or person who knows best has been ignored previously! Thanks for the update, fingers crossed for you!