Referred to ADOS, trying to come to terms with it

[gutted2014]

This is the first time I've posted about this, so please be gentle, it all feels very raw.

Am just back from SALT with DS2 (2.11) & she is recommending he be referred to ADOS as she suspects he has autism. I am gutted. I always knew he was 'different' but I put it down mainly to a language delay plus quirkiness.

He was referred to SALT at 2.0, at my request. He had glue ear for at least 8 months in the last year, too. He had 10 words when referred, now has about 40. He has seen 2 different SALT, both have said he has made more than the expected amount of progress between sessions (last lot finished in October).

The other concern I have had about him in the past is that he loves doors and used to sit for 5-10 mins opening & closing the doors on a toy kitchen, plus he likes to make sure that lids are put on things when finished. But this has become a lot less over the last 6 months or so, to the extent that he only really does it when tired now, although he does always have to make sure a door is shut. He can be taken away from doors/lids without more than a small squeak of protest.

Apparently, his language is about a year behind where it should be. SALT also said that although he has great eye contact & looks to both me & her for help, interest & reassurance etc that he was not relating to people how he should. Eg she was blowing bubbles & said 'ready, steady' about 10 times, he only said 'go' twice, she said this was not consistent enough. Also, she said his play skills are delayed - she had some toy animals out & he was not very interested, although did copy her a few times with noises & making them gallop etc. He has been in an awkward mood all day Also, he does tend to shout, but can sit nicely when the situation requires it eg in groups or restaurants etc.

SALT was talking about schools & about specialist language units, but said he probably won't need a special school as he is very sociable & as he copies can obviously learn from others. She also said that he is doing everything she would expect, but from a younger child, so he may have a delay rather than a disorder. She also talked about DC having a diagnosis when young & then outgrowing it.

DH does not think that DS has autism, just that he is quite delayed. I don't know what to think. I am just sad for my beautiful boy. I don't want him to have autism, but then I feel ashamed for feeling like that

Sorry if this post is jumbled, I just wanted to get my feelings out & I thought you guys would be well-placed to understand (hopefully).

Also, I just wondered if anybody can tell me what is likely to happen at the ADOS assessment?

The SALT kept saying how lovely he is & what a pleasure he would be to teach & how good I am with him & patient & I just felt like crying & saying don't be so patronising This makes me a terrible person, doesn't it Sorry for rambling, I have tears streaming down my face

Aww

He sounds like a lovely little chap :-)
It's very very hard and it will be raw for a while.
This is normal
But he is your same boy that he has always been Gutted... And the only thing that may have changed is that you may now be better placed to support him should he need it.
You are doing the very best for your child
Chin up girl

There is a good description of the Ados assessment online somewhere ...I'll see if I can find it .
Ds was older when he was assessed ( 10) so it was a different version but basically they play with them ( it feels like that anyway) . From their behaviour/ responses during play they are scored.
Ds enjoyed it :-)

No it doesn't make you a terrible person. You have had a huge shock and it will take time to process it. What you're feeling is perfectly natural. . I know I felt they couldn't know my child better than I do. They don't. They do know signs to look for that I for one missed.

An autism diagnosis, if he gets one, won't change your little boy. He'll still be your beautiful boy. The positive side to getting diagnosed early is that support will be in place when your son starts school.

My son had the ADOS test when he was four but still non verbal. I sat in the corner of the room and my son sat and played with a SALT. He was in front of me so he couldn't see me. They played with some bubbles, a phone, small world figures, looked at a book and, to his delight, blew up a balloon and let it go. Another SALT recorded the session. My son had a great time. He didn't want to leave. It was really relaxed.

I can understand your feelings. I came out of the ADOS smug that he'd shown them he doesn't have autism. He does have ASD. It took a while to process that but we did. Now he's getting help at school, he's progressing and more important he's happy.

Thank you all for replying, it's reassuring to hear that I'm not being awful & things aren't terrible.

I just feel so sad for ds & want to protect him from everything. I feel angry that anybody would say he's less than perfect. I feel scared that he'll be left out in the future, and that people will laugh at him. I don't know if being referred so young means he is severely affected, although salt said she thought not. I'm also scared that 3 week old ds3 will be affected too. And I'm ashamed for feeling like this

He scored 1 on that. I know that he is different to other children in some ways, but I always thought a lot of it was down to language. He doesn't understand or say as much as others. He has always been late to do stuff, pointing, self feeding, walking, crawling,but he always does it in the end (although he doesnt point now so much if he sees something, he tells me using words what he's seen).

When we saw the audiologist last at ent, he said glue ear was not present that day, but had been for 8 months before, so he'd expect a speech & language delay of that much.

I don't want to be in denial, but I really can't believe it.

Just thought, though, he is 35 months, so 5 months over the upper age limit for the mchat.

That was my initial reaction, but dh says to grab any referral with both hands, and take any help we can get for ds, whatever is wrong with him. The salt said it would take about 18 weeks, so either way it will be interesting to see what progress ds makes in that time.

Actually I have thought of a couple of other things that puzzle me about ds, I don't know if they're linked to a general or language delay or not. When people he doesn't know well greet him, he doesn't really respond. He happily interacts with them after the initial greeting, though & greets people he knows more enthusiastically depending on how well he knows them eg dh he runs up to & puts his arms out with a big grin. Also, he doesn't really answer questions such as what did you do today etc. He will answer where is x, what do you want to drink etc, using his words or gestures of some sort.

Hi Gutted

I feel that we are kind of going through the same situation.

Though my son is four years old but has the same speech as a 15 month old..so very severe. Though, mainly uses made- up gestures to communicate..he has several of these made- up signs.

I suspect he has autism..some professionals degree and some don't. But, i have been through the ADOS with my son, they said he had autism then two months later they changed it to inconclusive... ( long story) so he is having his second ADOS in a couple of weeks.

Depending on your DS language level..they are different modules they use to assess a child. My DS had module 1, because of his severe language delay.

So they looked at his play skills, i.e. we had a birthday cake, free play, puzzles and a remote control car and some pop-up device that is meant to scare the kids...to see if your child was able to look for reassurance from parent. They would also like to see if your child can communicate in other ways and use things like eye- contact, sharing attention etc.

adrianna it's good to talk to somebody who's going through the same thing. Thanks for your description of ADOS, it doesn't sound terrible, already I'm trying to picture how my son will be with things. Was it just the speech delay that led you to suspect autism in your DS? I think with my DS there are very other indicators that I can see - he doesn't have any problems with change or routine, doesn't have meltdowns or even really tantrums lasting longer than a minute or so, doesn't have any issues with food, is always asking for things & pointing things out - but obviously the SALT can see something that concerns her

One thing I would like people's advice on - does anybody have any ideas I could try to stop him from shouting? He seems to do it when he's excited or frustrated & when he repeats a word or sound a few times. It has caused other DC to cover their ears around him on 2 occasions & that makes me feel sad for him

I have spent the whole of last night turning things over in my head, I still can't quite believe this is happening. I still keep bursting into tears at the slightest thing & my eyes are all puffy (not helpful that DS3 had a really unsettled night, waking every hour or so). DH is being great & saying that we must get whatever help we can, that he won't love DS2 any less or differently (of course neither will I) & just being really logical about it all. I want to be, but I just can't get past being upset. DH is working from home today so he can support me, which is lovely, but in a way I'd rather be on my own to process things.

Anyway, I'm rambling again, but I will probably be back on here during the day. Thanks again for all the advice & support

Thanks Polter. I do wonder if the shouting is linked to the hearing issues, certainly, but I guess there's no way of knowing for sure. I will try the method you've suggested.

You are right as well about the assessment. I guess it's like any illness or injury etc, you have to find out what's wrong so you can treat it. I think what's hard for me is the thought that he won't ever 'get better' and wondering what his future holds - will he be able to leave home, have a job, have a family etc?

You did give me food for thought in your previous posts, I must say. I have always thought his difficulties were mainly speech & language & that when that improved, so would other things eg his interaction with others, his play skills & so on. I have definitely noticed a vast improvement in him since his clear hearing test in January, he has more words & his play has developed somewhat. But I can still see that he's different to other dc in some ways, he doesn't understand as much, he shouts more, he doesn't always join in (although he often tries). I suppose the assessment will tell us what's what, it's all so confusing.

(((((((((Huge hug)))))))) for you (sorry not very mumsnetty).
My DD had a huge regression in language at about 20 months and eventually (about a year later) had her ADOS and was diagnosed with ASC ( they call it Autistic Spectrum Condition in my area but it is autism). I have a couple of relatives with autism so I had some idea of what it was, but I was still massively in shock after the diagnosis. I felt cold and numb. But a few days later we attended an autism group and I met other parents and children the same age. It was the best thing for us because I saw other children like DD and some totally non-verbal children. I realised that we had a lot to be thankful for. DD is much more interactive, much more communicative and has not got any co morbid issues that many other children that we meet have. I imagine your DS has a lot going for him too. Plus we had a lot of help and intervention, free courses (Early Bird was helpful) etc once she was diagnosed. The hardest bit truly is the not knowing.

Fast forward 18 months and DD is speaking in good sentences. She goes to nursery with 1-1 and enjoys it. She is better than I could ever have imagined. She is happy and friendly and her anxiety is less of an issue now her understanding is developing. I wish I could have had a magic window to see how much more positive it would look now.

Be kind to yourself and remember nothing will have changed but the level of understanding if the ADOS reveals he is on the spectrum.

PS Poltergeist and others are correct. Your child will still do all of the milestones but might just have their own timetable for it. They will still grow and change and develop and enjoy their life. My daughter is a wonderful person and fantastic company and she is very happy.

I hope you don't mind, but I've sent you a pm as our situations are so similar.

Update - We have just had our last speech therapy session for this block of 4 sessions. The SALT, who was before talking about referring immediately for ADOS, has now said she wants to refer DS to a paediatrician instead, in case there are any other issues and then they can refer for ADOS if they feel it's necessary/appropriate.

She said he has very good joint attention skills, very good copying & that his language is developing well . We need to work on pretend play, although he does do that sometimes eg pretends to bf, wind, sleep etc dolly plus plays rolls cars along floor/garage & sometimes puts people in them, but only pretends to eat pretend food, not mix, peel etc. We also need to work on ready, steady, go being used consistently (something which he does outside of the sessions but not in them so much )

I have noticed developments from him since his first session there 5 weeks ago - he is starting to put 2 words together now, copying people more (eg entertainer doing dance moves at a disco), identifying picture flashcards at nursery & home and loads more besides!

I don't know what to think, really, but I do feel positive & happy that he's made the progress that he has

Hi my son is 6, diagnosed at 5 but I realised the truth when he was about 4 too. I was beside myself when the penny dropped. To the point of almost hysterical. But you do adjust. We went through a lot, he was already in ms school while we were getting assessments, diagnosis and statement. I didn't think it was autism in the early days - because I was comparing him with the one and only autistic child I knew! Also, because my older son had language delay and turned out fine (though I now suspect he had very mild traits himself). It's great that you have got the assessments booked. What I didn't realise, once the penny had well and truly dropped, was just how long it would take to get all the appointments and the diagnosis (about 8 months in my case and that's good from what I have heard from others). By the time he had the ADOS test, I knew for sure what he had, so it was just formality in my mind. The process we went through was referral by SALT to paed, questionnaires by us, SALT and school, 3di test with paediatrician, blood tests to rule out other conditions, ADOS and then multi disciplinary meeting which resulted in diagnosis. It was all quite straightforward really. My son is at special school now. The change in him between age 4 and now (nearly 7) is amazing. He does have autism, he is different from his peers but his developmental progress has been great and the behavioural difficulties are so much less now. He is happy, his needs are being met and I don't compare his progress against anyone else's but his own (if that makes sense!)