ADOS results say no diagnosis, ADHD, any advice?

[IceWater]

Hi,
I have used this forum over the years to discuss my worries about ds (now 10) who I suspect has ASD but it's been a while since I posted so apologies this is rather long.
Bit of background... when ds was a toddler he showed all the stereotypical behaviours of ASD need for routine, stimming, no role play, lining up toys, tip toe walking, speech delay with echolalia etc. This was all flagged up by nursery and primary school also, however ds is very sociable I would say overly so and has always wanted friends, whether they wanted to be his friend or not! He has also always been very hyperactive constantly bouncing and fidgeting, touching everything in sight etc. As he got older these behaviours lessened but were still very much there. Finally last year he was referred to CAMHS and diagnosed with ADHD they also referred him for ADOS. The results have came back as no diagnosis.

A little about ds now. He has no friends but thinks he does, if he meets a person once he thinks they are his best friend. He has the same obsession that he has had since he was 3. He has various tics that he finds very distressing. He has lots of sensory issues, he still tip toe walks, he sniffs everything and touches items to his face, he won't have his hair cut and gets distressed by washing. Food is not allowed to touch or change brand. He has little sense of what is appropriate for his age he wants to act like a younger child and befriends even toddlers he see it unfair that he is older. He would happily not wipe nose even if friends mention it's runny or put deodorant on even if he smells bad, he constantly touches his private parts and can't understand it's inappropriate. He has no sense of personal space and constantly grabs my dp's bum. I can't take him anywhere because he still constantly touches everything, jumps, walks backwards around shops etc I could go on....

In the ADOS they said he did not score because he could have a conversation with the examiner back and forth. I think ds really struggles with communication unless it's one to one then he loves it or if it's on his terms he just talks 'at you' generally. In fact at a recent SALT assessment he scored 1st percentile of non literal language and 3rd percentile for receptive vocabulary. He also used gestures and asked the examiner for information and gave names of his 'friends' who are actually just classmates. He was unable to make up a story and used functional objects as intended, he also showed repetitive behaviour but there was no anxiety, in the real world ds has LOTS of anxiety and is showing aggression with it recently. They also noted him touching himself throughout. Ds admitted he holds his tics in at school they say this is a sign of social awareness so not ASD

Conclusion of all this is they believe it's the ADHD causing all of the above and he will be starting a trial of Strattera soon. Does this sound like just ADHD to anyone else and will the medication really help? I don't know how much more fighting I have left in me and I'm so concerned for his future.

I can't comment on the ADHD, but interestingly, on dds ADOS, she was noted as socially reciprocal, smiling, chatting, appearing to have recipricol intent, however, they noticed that she didn't sustain eye contact, tried to avoid the examiner's gaze, didn't display appropriate facial expressions or the facial expression didn't match her mood. Dd did receive a diagnosis of ASD. She did also use gestures (though they expected more), used objects as intended; but is seemed that they could see past her masking and while she complied with most things, they said she lacked creativit.

I honestly thought she'd 'pass' ADOS but I was impressed by the quality of the report. I've never really thought about the ADOS process before, but I suppose it can be open to interpretations?

A pychologist told me that the Ados is not the b all and end all, she told me there is a much bigger picture, when my son has the ados done all that cam from it was he spoke in a monotone voice, anyway the pychologist told me this a few months back, just because they do not fail the Ados does not mean they are not Autistic. If that makes sense. I belive the disco assesment is supposed to be much better

We were in exactly the same boat, your ds sounds just like my dd. She had the ADOS when she was 8 and we were told that there wasn't enough evidence to support a dx but instead said she had ADHD. They said her lack of eye contact and conversational skills were caused by inattention. I wasn't convinced but at least it got her extra help in school. Her paed, OT, teacher and specialist nurse all pushed for a re-assessment as they also remained unconvinced so she had a further ADOS at age 11. She was said to have unusual facial expressions, monotone voice, unable to have a two-way conversation - she just talked at them with her own interests, she used unusual phrases, could not engage with imaginative play, etc etc. They were able to look a bit deeper at her and see her difficulties. Her eye contact was very poor on the day and she rocked and flapped her arms throughout. Many people would never guess that she has ASD if they don't know her well, however when I bring her and her siblings to ASD groups she blends right in whereas her siblings stick out like sore thumbs.

Diagnosis is via comm paed (neurodevelopmental clinic) in these parts. The team first said ADHD but wanted further investigation for ASD, the consultant thought behaviour was the result of ASD not ADHD. Then he 'passed' the ADOS and the diagnosis went back to ADHD.

If DC have had the ADOS and a diagnosis (or not) you are entitled to request second opinion. I asked my GP for referral for a second opinion to a centre of national excellence as I had 'exhausted local expertise' and requested GOSH HFA ASD clinic (social communication disorder clinic). They repeat the ADOS and also do the 3Di and WISC and both parents and school fill in loads of questionnaires. There were about 4 separate appointments over a six month period. He was diagnosed with ASD and nobody has mentioned ADHD since.

It had been suggested by the local team that he be put on medication. That has been quietly dropped now. Plus he now gets support from autism outreach who visit him in school twice each half term and meet with parents once every half term. They also train and advise the school and provide them with resources. It was extremely time consuming but worth it in terms of access to support.

Thank you for the replies. I'm rather confused by how conflicting the different reports are SALT noted unusual eye contact and a monotone voice, ADOS didn't flag up either of these. ADOS said his reciprocal language was great but his receptive language scored 3rd Percentile at SALT. I do think as he gets older and especially starts secondary school things will become more obvious. Is it likely that the medication for ADHD will mask the ASD type behaviours even more making it harder to diagnose? also if it's not ADHD at all as I suspect it isn't will the medication just have no effect proving it's something else?

I agree with Polter. ADHD medication is pretty specialised. If the person taking it doesn't have ADHD it often has the opposite effects and it will be fairly clear. That might be why they want to try it first because it's a fairly easy check - if it works it usually works well and you can see an improvement within 24h. So if it doesn't then they might try changing the dose or a different kind of medication but you should get answers with it fairly quickly.

This is a not very educated guess, but I'd say it's possible that the ADHD symptoms at the moment are masking the ASD ones. And he could have both. So it does seem plausible that medicating for ADHD would bring ASD symptoms to the fore.

The conversation thing jumped out at me anyway. The fact if he's comfortable he will talk at you. That is a very ADHD thing.

ADHD meds actually have a positive effect on most people's ability to attend and focus, that's why uni students buy them on the black market! They don't necessarily 'not work' if you don't actually have \ADHD (though it's fair to say you may see a less clear response).

However yes it is common for children once medicated for ADHD to have their social communication symptoms become clearer, because it is easier to see that, for example, inability to sustain a conversation is not based on attention control but on social interaction issues.

Extract from an article quoting research:

The double standards implicit in the warnings about off-prescription use might lead you to think that the drug somehow acts differently on the ADHD brain than it does on the non-ADHD brain—that what’s soothing to one is likely to be either ineffectual or outright harmful to the other. But those who have studied the issue carefully, including Volkow, know that’s not quite right. Ritalin, Adderall, and their chemical cousins work in part by increasing the brain’s access to dopamine, a neurotransmitter that helps control the brain’s pleasure and reward centers. For people with ADHD, that could mean the ability to concentrate on tasks that would otherwise be painfully boring. And for people without ADHD … it could mean the same thing.

Kollins, of the Duke ADHD Clinic, has studied the effects of stimulant drugs on people with and without ADHD and concluded that the differences are largely a matter of degree. “Because patients accurately diagnosed with ADHD are coming into the game at a different baseline as far as what’s going on in their brain, the drugs might sort of bring them back up to a level playing field,” he says. “For somebody without ADHD, because they’re already functioning at that level, it’s going to take them a little bit higher.”

www.slate.com/articles/technology/superman/2013/03/adderall_ritalin_vyvanse_do_smart_pills_work_if_you_don_t_have_adhd.html

Also

www.forbes.com/sites/matthewherper/2012/06/10/the-questions-about-adhd-drugs-the-new-york-times-didnt-ask/#37f620902f07

Obviously it isn't a great idea and from what I see it is easier for a non-ADHD person to 'overdose' and get 'high' from stimulants but in a small enough dose as far as I can see they don't have a dramatically different effect on an ADHD brain than a regular one; they increase ability to focus. When it says 'could take you a bit higher' in the original article I assumed it meant that it would take you from 'ordinary ability to focus' to 'super ability to focus'.

If you follow the neuropharmacology link in the second article you get to the raw published study with refs to a number of others.

He could just have a social communication disorder, without being on the spectrum.

not! With the list of red flags in the OP including sensory issues, repetitive behaviours, tics, lack of personal space awareness etc it is quite likely that its not just a social communication disorder!

There are so many overlaps between conditions ice ! ADOS is not the be all and end all at shazz was told! Has he had an OT assessment? You could ask for a DISCO assessment as that picks up hard to diagnose people from their history and it sounds like you have plenty of that!

Good luck

OP Russell Barkley who is a leading expert on ADHD just posted this on his facebook page re ADHD and ASD together. Hope you can see it. Let me know if not!

www.facebook.com/DrRussellBarkley/posts/427686074088958