Confused by ADOS test

[Figamol]

Hi all,
Earlier this year the leader of my sons (now 27mths) mother and baby playgroup insisted I should take him to see someone, after spending nearly a year with us. I knew he had obsessions, was really difficult to engage and still hadn't said his first word at 23mths but was shocked at how strongly she felt about it so I set about doing something. She is also a qualified toddler autism screener.

We live abroad in a private health system so its pretty easy to access the specialists you need to by yourself.

So I addressed what bothered me most and thats the language delay. I though that this was DS main problem and wanted to shrug off the other concerns as actually he is very sociable and happy. However on the first appt with her I was shocked he spent the whole time obsessively playing with one cupboard door, never reacted to his name, wouldn't engage in ANYTHING. It was awful and upsetting to watch. But I realized that actually he is like this at home, its just he is number 3 child in as many years so it has always suited us that he's always played by himself. The speech therapist said she wasn't taking on anymore patients but felt so strongly about him needing help that she wouldn't let me leave without bringing him back for more treatment. Of course I agreed.

In 3 months he's made GREAT progress, there is much more eye contact and hand pointing, not many more words, and he has found enjoyment in engaging. At home he continues to ignore his name and plays obsessively with cars and anything with a door on it. He recently started creche and they've pulled me aside everyday complaining he is so difficult to engage, doesn't understand basic instructions and that they shout at him all morning and he just laughs at them. The rest of the time he is in a corner on his favorite train set or castle.

In addition to this at home he has never slept through the night, he screams with night terrors. He always has runny stools. Taking him out anywhere where he spots a lift, or automatic doors can turn into a 20 minute battle to get him away. Unlike my other kids I cannot distract him to focus on anything else and he will scream and scream till we get back to the lifts and doors.

So I hunt out THE best autism specialist. She was wonderful and warm and knowledgeable so we were delighted to have found someone that wanted to help get to the bottom of it. We had a first meeting where we tell her what everyone has been saying and she says she saw some red flags whilst he was playing and that they would video him and do the ADOS test.

Today we went to the Speech therapist where he engaged a little, but also was obsessive as usual about his one picture and sat under the table for the majority and shivered with terror touching playdoh.

We went to the ADOS test after and where she had brought a wonderful guy who just blew me away with his ability to get him engaged. He responded so well and there were smiles and eye contact and pointing. I was desperately confused. I was delighted to see this little side of him was in there but so sad we barely see it. She said she's on the fence right now about a diagnosis but will score the video and call me on Monday.

My problem is this. We were in an empty room with what was effectively his own personal clown with toys that he likes, bubbles etc. It was not representative of the struggles we deal with in his daily life. There were no doors, no toys with doors, no busy environment that makes him seek out comfort. No awful dinner time struggles as he REFUSES to eat without a distraction like a car or an iPad. We went to Disney and he only wanted to play with doors to the point where the struggles were physical. His sisters birthday party this weekend, he was in meltdown at the stimulation but I put him by a sliding door and he played with it and calmed down.

I don't want to come across as wanting him to get a diagnosis. But the little boy I saw today is not who we deal with and I know he will get great scores and not be diagnosed. She said herself she will take into account what we've told her and she'll call the speech therapist to get a bigger picture. But now I just struggle with the idea that perhaps its just us as useless parents that aren't able to find the little boy they did and that all of this has been fuss over nothing. Which I would find hugely embarrassing. I find it really difficult to know my mind anymore, Ive got friends that say he's fine and professionals that think he needs help. I find Im always trying to analyze him and its exhausting. She asked me if I have a gut instinct that something is wrong and I said I just don't know anymore, that I know he is different but is it a problem. Im not sure.

Has anyone else been through this and found their child was different during the ADOS and didn't represent the bigger picture. How did you deal with this?

I'm a qualified autism assessor too. I'm afraid you simply can't diagnose based on an ADOS. You need a very detailed developmental history too.

And 27 months is also too young. I didn't think the ADOs could be used until 36 months. Even so, there's so much that can change. We don't assess until 36 months and even then we go with a working diagnosis and we go cautiously for that reason.

I think you need to be very cautious getting this diagnosis at such a young age.

Hi

I've known kids who were 24 months at the time that have a diagnosis of autism.

I'm surprised they jumped you straight for the ADOS, as they usually would do a very detailed medical history from the doctor, refer the child to get some tests.. i.e. Hearing test, blood tests.. Whatever.

Personally, I wouldn't be bothered about finding the BEST autism assessor, I would be more concerned about if my child is getting the appropriate help and being referred to services.

Regarding the ADOS, they don't usually rely on that alone. They talk to the school or whoever is working with your child to provide info. I know a boy who has the triad of impairments and did have enough to receive a diagnosis. But surprisingly he didn't.

They may do a re-assessment for the ADOS based on what you said.

Yes my child did present differently in the assessment.

But he was the opposite from your son, and the professionals who worked with my son agreed that the assessment wasn't a true reflection of him. So my son was re-assessed.

Thank you for your messages. I feel like after having slept on it, he does need some help and if she decides it won't be in their centre, there are things I can do for him outside of it.

Everything Ive read and been told stresses the importance of diagnosing early, apparently changing the brain pathways is much easier before the age of 3 which is why they wanted to meet him and assess. Its the general consensus that you can see autism by the age of 2 if not well before. I was surprised that you though it was too early speechieusie as most of the specialists I've met says the worst thing you can do is leave it to the 'wait and see' approach.

I don't think 27 months is too early to dx.

but your whole assessments seemed rushed. Have you only be seen by a Salt? Ever seen a developmental paed? Has anybody looked at the complete developmental history of your DS?

Where are you now. In the UK and what kind of support and therapy are you getting?

We're not in the UK. He has only been seen by the SALT and the Head of the Autism dept of our region along with their developmental pediatrician. I know it feels rushed, I think that is the way it is here as everyone has access to specialists without being referred. Also they believe in early intervention between the ages of 2 and 3, so they don't waste anytime.

They are also opening a new therapy centre on the 1st of Nov where he would get 1 on 1 treatment and play every morning and I think the feeling is they need to know if they should save him a place or not. I think this is very nice of them to be trying to make sure they can accommodate him if they have to.

Hi

I understand what you mean about every professionals saying that the earlier diagnosis is better. Which is true in some way.

But when my son was diagnosed at 3, I thought ok that's fine, there's going to be a team of therapists that will refer my DS to the appropriate services, doctors, early interventions etc.

However, it wasn't like that at all!? When he got diagnosed, all the professionals did were gave me a bunch of information about autism ( which I already know a hefty lot about, since every book on my shelf is about autism, so that didn't help).
Benefits information, support groups info and that was it! No referrals! They were just trying to rush me out of the door.

I then asked them..."...so would my son be referred to X Y Z.?"... they replied "... You only get referred to services based on the need of the child... Not on the diagnosis..".

I was shocked and must of been naive to think that since DS got a diagnosis that a flood of professionals would start referring DS to the appropriate services.

I then realised that I was focusing so much on getting a diagnosis, I wasn't really thinking about pursuing the doctors to refer my son to the right services and you can do this without having a diagnosis.

Your DS, is in the systems so that's good. But you should be focusing on getting your DS referred. So if he has issues with his eating or sensory issues, then get a referral to see an occupational therapist and a dietician.

If he has issues with routine, a lot of kids ASD or not use a visual timetable. Even speak to your local autism outreach worker or call NAS, explain to them that your son hasn't got a diagnosis of autism as of yet, but he does have this symptoms and was wondering what things do they use with children with autism, that may benefit your son.

Please, please, go on this site: www.teachmetotalk.com. This is the only site that has intensive information about communication, hefty advice about working on speaking? Understanding.. Commuication. She has podcasts and things to look out for if your kids have autism etc.

But good luck with it all, you will get there!

That sounds really odd. Sure you get a diagnosis if there are signs that there are services that the child needs. You must have been terribly frustrated.

We actually said that to the autism specialist. That we're not pushing for diagnosis, but that he seems to have different needs to our other two and I feel like we alone can not give him what he needs. He's had the SALT for 3 months weekly and there is such a difference, not many words yet, but really in terms of engaging.

In addition Ive found an occupational therapist and a developmental optometrist so I will get him seen by these too. I think I was hoping someone would see his issues and organize to see who he needs. This may yet be the case but up until now Ive done it alone so I guess I'll continue.

We just want to know if he should stay at the creche in a big group being shouted at for non conformity or should I be looking for a smaller structure, or taking him out of daycare completely and hiring a young bouncy au pair to be his clown. Its the not knowing what to do for him that is frustrating.

Thank you so much for this advice, its super constructive and I will definitely check out the site.

In my opinion, you can tell that children are likely to be autistic much earlier than three, yes.

You can see it at 15/16 months sometimes. And occasionally earlier.

However, children change hugely. It is our policy (where I work) that we will assess a child's development and communication at any age, provide advice and strategies and support the parents. It's not especially important at that age to have any label - just to describe and treat the presenting difficulties.

You get lots of information from how the child responds to your advice or therapy.

We will formally assess from 3 years. If you were to speak to Judith Gould at the National Autistic Society (she trained me) then you'd find she takes a similarly cautious view on diagnosis.

Thank you, I really appreciate you explaining why you said what you did. It makes sense.

The problem her is without the 'label' I have to pay for everything privately by myself. An SALT session is £150 a time whereas with a diagnosis, it will be state funded mostly. Our private health insurance here doesnt cover autism.

He is changing all the time, the change in him since the first SALT session is huge. But there are enough signs to ask to have him assessed with a view to diagnosis. Its a real chicken and egg dilemma as I actually also think it better to treat the problems without labellumg him so young.

I would not worry too much about the diagnosis as such.

I would just run with whatever diagnosis gives your DS thr best support. If that only comes with an autism dx then just take that route.

Thanks so much for all the support. She called to say he scored mild to moderate overall with the ADOS and the questionnaire/evaluations. She confirmed to me that whilst he performed well she could see what we were trying to tell her and that I wasn't going crazy. He'll be put in a one on one centre from next month on an early intervention programme. I feel nothing but relief for now, I can stop analyzing him so much. She's not putting a label on him, says it could either explode or disappear around his 3rd birthday so lets just get on with treating the symptoms for now. She really is a wonderful Doctor and we're very lucky to have found someone so level headed.

Its really good that intervention is starting early. Its a much better system than in the UK. It far better to get support, than to wait and see. Ds (who was first seen at rising 3 and not diagnosed till 7) has been damaged I am sure by the wait and see approach, so I am very pleased for you.