Ados next week and I am worried DS won't be diagnosed

[Levantine]

My 6 year old is being investigated for autism. It has been a long long time since we first met the paed (8 months) and in that time we have turned ourselves inside out to support him. We never tell him off, we prepare for transitions, we do what we can to help with his sensory issues, we give him supplements.

He is so so much better now than he was and I am worried that he won't score highly enough to get a positive diagnosis. It matters to me because the school hasn't done that much so far to help him and I think they are waiting for a diagnosis to put a proper scheme of support in place. I would also be worried about him going to secondary school (I know it's ages away) without a clear diagnosis.

Am I being silly? Is autism autism and that's that or if he is on a good day might they not diagnose?

It's a catch 22, isn't it?

I'd say that if what you've done to help him is significant enough to hide his ASD traits, that's no bad thing. Schools should put in place measures for SN regardless of diagnosis. Of course, they often don't.

In general, I think if he has enough traits to be diagnosed, they'll find them. Try to stay positive!

I know. It's silly isn't it. Just today he tried to strangle me because I had called him darling not "ds name", but he did it pretty gently and snapped out of it quickly - whereas before he might have smashed up his room and said he wanted to die. It would just be such an anti-climax not to get a diagnosis!

Levantine I feel for you. My dd2 has been on waiting list for ADOS for over about 14 months. She was first referred to Paeds when she was 4 years old. She is now 8years old. School provides sufficient structure and routine and at present she copes well. However, she does now have an IEP in place because she struggles with anxiety and hypersensitivity to sound when under pressure (asked to write something, or write words in a spelling test for example, she can get all 'perfectionist' about things, demands silence in the class room and end up producing no work). Plus she is making slow progress with literacy and numeracy. She is upset at EVERY afternoon session in after-school club because child X or child Y did not do as she expected. She is good in adult 1-1 situations, particularly with new people, all interested, polite, compliant. With me last week on hols we had multiple tantrums, meltdowns, rudeness, unreasonable demands. All over and done with fairly quickly now because I handle them with acceptance and reduced demands as appropriate together with concrete language, visual aids, the 'Incredible 5 point Scale' and explicit teaching about social situations. dd2 has a history of poor eye contact, delayed and reduced reciprocal social communication and severely delayed and disordered language and some explicit rigid routines and inflexible thinking, striking problems with non-literal language (especially written). With me so far?

In the last week of term we had ADOS (paid for private ADOS as CDC waiting list is seemingly never ending). At private assessment (observation in school, at afterschool club, ADI-R and ADOS) assessor noted subtle but significant difficulties IN ALL AREAS of the triad (well it used to be a triad until recently) of impairments commensurate with ASD. But they did not meet the 'severity threshold' for a formal diagnosis. He considered a diagnosis of Social Communication Disorder but says she can't have this dx because dd2 shows restricted and repetitive interests/behaviour, yet she can't have a dx of ASD (going round in circles? Much?). He stressed that dd2 may well have met the 'severity threshold' at the age of 4 but she has made an awful lot of progress since (not least because of intense therapy with amazing private SALT and because 60% of her interaction at home is imitation of her very placid, compliant and mature elder sister).

We are living proof that just because you pay for an assessment you won't necessarily get a dx.

In the meantime we are left with 'significant impairments on an everyday level' but with no diagnosis. Primary school is a fairly protective environment. Like you, Levantine, my main aim of getting a dx now is so we don't have to go through the years of assessments and questionnaires (we must have done about 25 questionnaires) and endless waiting and musing on dd'2s subtleties and whether it's ASD or hearing problems, while dd2's self esteem takes a nosedive in secondary school. I want all the speculation over and done with and would like to channel my energy into just giving dd2 the help she needs, with Autism Outreach available for whatever paltry help they can give in the future.

I have my own issues with the way the ADOS is carried out and interpreted. I just have to put my faith that our CDC appointment will take a more pragmatic and holistic view and give her the diagnosis that I feel she needs. Hope yours does too. Very very best of luck for your ADOS, look forward to hearing that they have a good handle on your DS and that you get the result you need.

Handywoman . That sounds really hard. Have you no working diagnosis at all?

He just bit me really hard because I didn't want to watch Sonic teh Hedgehog with hiim. I had started a diary which I might do again over the next few days and take it as supplementary evidence!

Definitely take a diary with you, or a list of concerns, grouped into verbal and non verbal communication, reciprocal interaction, anything that strikes you as unusual in its scope, duration or intensity, that includes sensory issues.

I gave our private assessor bucket loads of examples in each area, these were quite nicely prompted by the ADI-R which complements the ADOS. Obviously only a few made it into the report, it is not possible to recound everything that was raised in a 2-day assessment. I take issue with how much weight the ADOS has. As I say, dd2 is quite good at interacting 1-1 with an adult. Some of the things I told the assessor were interpreted subjectively e.g. my dd2 repeats the second half of utterances when discussing social situations (ie those situations when she is simultaneously speaking and thinking - you won't see it in a Q&A situation like ADOS or SALT session). I googled this and came up with the phenomenon 'palilalia' - a verbal tic associated with ASD. Private assessor dismissed this as 'something to help her process information'. And other things I said which were definitely in the 'obsessive' or 'unusual in their scope, duration or intensity' which he dismissed e.g. her subtle turns of phrase which don't jump out but are nevertheless novel (self-generated little phrases that you don't hear elsewhere). He dismissed this as 'something that has become habit' . Seems with this as with anything else, you can interpret differently depending on which side of the fence you are coming down on.

I tried to ask our private assessor how we should sum up the result of the assessment (since he won't dx SCD or ASD) but he never gave me any pointers. I am left feeling the outcome is that dd2 is 'a little bit autistic' (lower case 'a') or has 'Autistic Traits' - a term I hate with an absolute passion!

Quite where this spectrum starts is a mystery to me, I am no nearer understanding it than before the ADOS. I would have thought if there was a significant/everyday impact there should be a dx. I guess dd2 dips a toe on the spectrum. To me, this means she is on it not off it, especially as it's affecting her at school/socially every day. But I am also trying to stay positive, our CDC ADOS is still pending, our private report may help, and if I fail to get a dx in the end it won't be for want of trying!!

Forgot to mention that on day 1 our assessor did ADI-R and observations in school/afterschool club and told our private SALT the next morning (whilst he was consulting her) that he was expecting to give dd2 and dx of ASD. After the ADOS, he changed his mind

After all this he said he was perplexed about dd2 and 'needed to go away and consult other professionals, consider a dx of SCD and generally mull it over' Partly this seemed to rest on the fact that dd2 was shown photos of different emotional responses. dd2 was stumped by quite simple visual scenarios (a Mum and a daughter doing homework, the Mum was angry, dd2 did not pick up on this) but yet was able to identify that in another photo, adults were stressed and lost abroad. Because this didn't fit the pattern it seemed to sway him away from dx.

I would have loved him to have spent the last week on holiday with us..... that would have been a more 'holistic' assessment and he and nobody could deny that there are some striking problems with her level of understanding social communication, and with anxiety.

Praps I'll invite him next year if nothing comes of the NHS assessment..... perhaps we'll go to Disneyland hahahaha!

Blimey. It sounds as if your daughter has more pronounced traits than my son and we have had a couple of "this isn't a diagnosis but if it were a diagnosis then he's autistic" kind of conversations from our community paed, who used to run the social communications clinic.

Did the behaviours you reported make no odds? When I rang our paed in a panic because DS was trying to climb out of moving cars she took it very seriously. Do you think that perhaps your NHS assessment might be more helpful?

I am going to feel like a total twit if I have to go back to school and say oh he isn't autistic after all becuase I have been on and on at them to get autism outreach in place. I know, it doesn't matter, but still.

I think that if your child is climbing out of a moving car (poor, poor you, that's awful) then it will be taken seriously. Rightly so. You are fortunate to have a Paed at the end of the phone and I hope they take everything into account.

Girls often express their ASD with more subtlety. Don't get me wrong, all these 'trait's my daughter has, appear but are in reality fairly subtle. It has taken me a good while to see everything in context. dd2 holds it together in school, they think of her as a bit of a 'one off' but not ASD apart from with anxiety and demands over her environment. Except that she is a different child at home and can meltdown completely and kick out, including in public, outside school, in the cinema etc. when she can lose control and growl like The Exorcist. But this is not so frequent although it goes in phases (seems to relate to how things are at school).

It is only when you put the pieces of the jigsaw together that you can see it in terms of ASD. Her play: imaginitive, yet intense, restricted (barely any narrative), repetitive and focussed on small things like bottletops, stones, marbles. Her verbal communication: repetitive in quality (to the trained ear of a SALT), difficulty with non literal language e.g. 'dropping in for tea' can tell you what a verb or compound noun is, but can't describe a cat (pragmatic language issues). Uses novel phrases... awkward and poorly judged interaction which is brief in nature and she normally gets distracted and moves on to something else. Repetitive overtures to friends and failure to notice when they are uninterested or take into account the fact that they have got bored and wandered off! Her teachers think she is well integrated and has lots of friends, yet she never does social chit chat, and barely shows any interest and only the most basic understanding of the motivations, feelings, values and lives of her friends and describes all social difficulties in terms of the 'rudeness of X or Y'. During the private assessment the assessor sat next to her to listen to what she was saying in afterschool club, and sat next to her the whole time. Her peers approached him and asked questions, read his name badge etc. dd2 made no acknowledgement and took no interest in his presence. She would not entertain having new pants in her drawer for six months. On account of them being new. Nothing earth shattering there, until you put it all together or til you are on the receiving end of a screaming meltdown (normally that's only me or hubby).

When I took dd2 to see the Paed in June 2012 she said of dd2 (bearing mind the word Autism had not passed my lips): "I think she may be on the spectrum but be quite subtle". I hope, hope, hope, that she still feels that way after our NHS ADOS. I just need someone to see it like this too, put 2+2 together and come up with something more concrete than 'a little bit autistic' then we can all move on and understand!

You can always ask for a second opinion/another referral if you don't agree with the result. When my ds had an Ados test we were given a dx of 'behavioural difficulties' .
A few months later we had several assessment meetings with a clinical psychologist elsewhere and received a dx of HFA/PDA. I think in some cases the Ados doesn't really highlight all the difficulties. Ds was very charming during the Ados test and obviously didn't present as he usually did. Good luck.

Hmm I hope then the good progress dd2 has made will be taken in the same light by NHS, Polter.

ADOS assesses communication and interaction rather than behaviour. Ds's psych felt he might not score on ADOS due to all the SALT and social skills input he had had, but he scored almost full marks, so the ADOS was clever enough to pick up more subtle traits, however well behaved they are.

mmm, maybe my dd2 is not on the spectrum, then. Wish the NHS would hurry up and put me out of my misery.

Hope they hurry for you - I do think it's harder to dx girls than boys, as girls do seem to pick up social norms better, even if it's learned behaviour rather than instinctive. I guess the ADOS would struggle to differentiate that.

Polter one of my worries is that there isn't very much relevant professional input.

On Monday he finally saw a SALT, who said she would normally observe at school too, but it is the holidays so she will do it in September if it's necessary. She said his concentration was fine, he was able to follow instructions. That doesn't surprise me, as he is pretty bright and likes working with an adult one to one. But in class he is incapable of sitting in a group, can't hear/process what the teacher is saying (not sure which really) and can't follow through on an instruction unless an adult is with him. The report from school is from such a long time ago, it won't reflect that as it has got so much worse.

No one has observed him at school. There is also no record of his sensory issues, as we are waiting for OT referral.

I suppose all I can do is point that out I suppose.

This morning he wet himself just as we were leaving the house as he "can't feel the energy". And then he got upset as I was stressed as late for work/holiday club. I said I was sorry I had got angry. Then he said (this was a big deal) that when he feels sad he gets angry. Followed quickly by telling me he doesn't like talking about feelings.

Anyway, am rambling now. It is just so hard!

Lev if there is any doubt then someone will go and observe your ds in school, but it might not be necessary (although I'd have thought it would be good practice to see how he's functioning in school, dx or not). In my neck of the woods, school observation is carried out by the specialist SALT who sits on the multidisciplinary diagnostic ASD panel. Did your SALT say if she is part of the diagnostic process?

I'd not worry about your ds's sensory issues not being documented. Parental report should suffice, I think. Brilliant that your ds talked about feelings, that's fantastic. dd2 blocks those sort of conversations outright, it's like lighting a touchpaper.

Must be such a nerve-wracking time, leading up t assessment. When is it? Rooting for you.

My son is being assessed for aspergers next week and I feel the same way you do for the exact same reasons. Everyone who meets ds for the first time is surprised when I say he's possibly on the spectrum. His head teacher, who was the one who pointed things out to us in the first place, says because he copes so well it's not immediately clear but once you're in his company for a couple of hours the signs begin to show. This is what worries me. The first psych he saw over a year ago was pretty judgemental and said she didn't think he was on the spectrum because he could maintain eye contact and she thought I was a bit over protective. She didn't listen to a word I said and just made up her own mind on the spot. He was referred to another psych for anxiety issues and fortunately this one was so helpful and saw him once a week for 5 months and it was she who said he absolutely needed to be assessed because she thinks he's on the spectrum. I'm still worried sick that they'll say he's fine and he won't get the help he really needs. I hope you get on really well Levantine.

Hi Levantine, I feel the exact same as you. My ds is being assessed this week. I will get the results some time this month. I am finding the waiting very difficult. I asked if I could get some verbal feedback this week but they said no, I have to wait for the full report.

Good luck, I hope it all goes well for you and that you get the results quickly.

I felt the same about DS2, he was clearly autistic at a young age, and having had DS1 dx-ed we put in a lot of early intervention. After a mess up in the dx waiting list he didn't get to the dx service until he was 5 when he was a lot 'better' ie he had become verbal, wasn't kicking doors off hinges in meltdowns every day, didn't throw tantrums if we tried to interact, he had actually gone to being 'too friendly - hugging random strangers etc. The team who had seen DS1s AS within minutes of observing DS1 in school, observed DS2 in school and weren't sure if he had ASD or not.
But the ADOS showed up all his autistic traits that he couldn't actually mask, on probing about things they worked out lots of his coping behaviours - he was reciting lists to them of what he had to do in different situations - then they came and asked me what he would do in a situation and I Recited the same list to them. He 'failed' the ADOS with flying colours - scored more than double the cut off in some areas.

I assess for autism as part of my job. I'm trained to use ADOS and DISCO. Apparently there is a high degree of agreement between results on the tests, but I much prefer the DISCO.

The ADOS is such a snapshot and I've seen it used inappropriately (eg with only one assessor - there should be two for score agreement). I've seen children with comprehension problems labelled with ASD because they didnt understand what the ADOS was asking of them.

The DISCO is a comprehensive history. It takes about 9 hours to administer (about 4 appointments), about 30 minutes to score up and another 5 hours for me to compile the report. Much more labour intensive, but I much prefer it and have more faith in it.

Hallo. Well I needn't have worried at all. As we got there ds climbed onto the desk and the examining bed thing and then flicked an elastic band into my eyeball and made me cry. So DH and I both relaxed

The paed did the interview and then asked what we thought. I said I thought he was a bit on the spectrum, a bit dyspraxia and had big sensory issues but that I was very concerned that without a clear diagnosis the school would continue to do nothing.

He said moderate ADHD and some ASD but that really he didn't fit any categories neatly. However, those two diagnoses would mean that school would start to put measures in place.

Big relief all round!

Of course who knows how good the support the school gives will be but they will now get in autism outreach for example. I am also pushing and pushing for OT referral and he seemed surprised he hadn't already been seen so hopefully that will come through. If not I am tempted to pay for private assessment at least.

AO are all very well and good but some schools do not take much if any notice of them. Paed may be overtly optimistic re school and level of support offered post diagnosis.

I would seriously now consider applying for a Statement if you have not already done so. Use IPSEA's website which is www.ipsea.org.uk.

Never forget too that you are your child's best - and only - advocate.