No dx of ASD from an ADOS test, despite overwhelming ASD traits.

[DiamondDoris]

My DS (aged 6) was assessed for ASD by an ADOS test in March this year. It was only carried out by a SALT while I sat in another room answering questions from a paediatrician. Both procedures were 45 minutes duration and then the SALT came into the room with my DS, sat down and said, he scored "quite well" in all the activities so he is not on the autistic spectrum, but has learning difficulties. I was upset that what he told us completely contradicted what I had told the paed. There was no consultation. I felt as though it was a snap decision. It was also classed as multidisciplinary (why???). I got a report a bit later, which was just going over what I had told the paed - no scoring, nothing whatsoever about how my son did in the tests. Much of the report centred around my bipolar disorder, and little to do with my son. My social worker has contacted this paed and she told the SW that my opinions were "one sided" and that he was learning disabled and because of this he had ASD traits - I would have thought that ASD might explain his social and communication and learning problems! He has an amazing memory, countless sensory issues, hypermobility problems to name a few. I've listed all his ASD traits and he seems to have 90% of them. He's a very tactile, loving child who takes to people quite well. I am currently appealing. I suppose what I am asking is, a) was this the right way to go about an assessment and b) anyone else experienced this? We are in Kent and I have heard from SW that Kent are very bad at diagnosing/or reluctant to diagnose. I feel lost.

NICE issued guidance last year on asd diagnosis. I am pretty sure what you describe is not compliant. i think there needs to be a psych eg clinical and / or educational. Observation should be in different settings. Have a look at the guidance.

I'll take a look at the NICE guidelines. Thank you.

Where I am there has to be 2 professionals with one being a clinical pych or paed. When my Ds was assesses the salt did the ados with a paed present also and a clinical pych spoke to me in another room. The salt who is an expert in Asd did a school observation, Then there was a formulation meeting with other professionals who had dealt with Ds over the last few years. They took the eps report into consideration also as well as the school findings. Ours was not a clear cut case.

How can the Salt know your Ds has learning difficulties?. The ados test does not test for cognitive functioning. An Ep would need to conduct tests on your Ds. What you describe does not sound like it was a complete assessment.

AFAIK you can ask for a second opinion.

We got a dx of ASD from a single assessment from a paed and SALT (who actually disagreed, the SALT felt he didn't have it). But they had a detailed report from nursery, and a very in-depth assessment and questionnaire with us.

Where I am I refused ADOS because like your situation it was being completed by one SALT who had no knowledge of other conditions such as ADHD or dyspraxia. I have since referred my child for assessment and they have totally changed the way they DX I would say to follow the NICE guidelines. Definitely make a complaint as Agnes has said it does not sound right.

They should be seeking reports from other settings (school). This would have the benefit of their being unable to dismiss your reports as one-sided. As well as providing a more comprehensive assessment. Mutidisciplinary assessment is really stressed as a prerequisite for assessing autism. They seem to be calling it multidisciplinary on the basis that there is 2 of them. Which suggests a poor understanding of the meaning of the prefix "multi"...and when it is something that has such an impact on your child's life and the kind of support they should receive, I think they should be seeking to gain as much information as is available, to ensure their diagnosis sends you in the right direction.

Ill message you op

I'm on my phone and can't figure out how to message. Can you get a referral to medway instead. I strongly recommend Dr durowuju who leads the social communication pathway.

my ds passed his ADOS two years ago and was diagnosed yesterday via CAMHS as having mild to moderate autism.

Don't give up hope. It has taken us 5 years to get this diagnosis

Thanks all. I've read the NICE guidelines and it certainly sounds as though they weren't following the guidelines and they didn't take other factors into consideration, it was purely based on this test - which I'm not 100% sure that it was ADOS - I wasn't given the name of it, didn't see it, don't know what it consisted of, no scoring or finds from that assessment sent to us. The paed told the SW that I had other reports to back her up... I don't know what she means, as the first community paed who saw my DS suspected autism. The first SALT who observed my DS at school (in reception) suspected autism. These reports were obviously ignored. The only other report I can think of that she may be referring to was an observation by CAMHS of my DS at school - she was a trainee psychologist, a trainee. She didn't say that he wasn't ASD.

Thanks ThoughtBen I will def. try Medway and the Dr you suggest. I'm starting to feel paranoid that I'm seeing autism where it actually isn't. Maybe because I have bipolar disorder (2), medicated and have all my faculties btw, they are not taking me seriously, that's how I feel.

FFS. Mum has a bit of bipolar so must be imagining autism? Have they done full IQ testing (Wisc-IV by preference) to check the SW's learning disability theory?

Get your psych to write telling them this?

Alternatively, sit tight till you've had a children with disabilities assessment, a carer's work-up and some respite hours or direct payments . Cos in a lot of areas, you're not eligible if your child has ASD without learning disability.

Mariamma Right about the link between mood disorders and autism :D It wasn't the SW who proposed the learning disability theory, it was the blasted paed. The SW is great and totally on my side :D. DS hasn't done an IQ test. He is very behind in his reading and writing, he has odd communication and often inappropriate behaviours in social contexts (like getting his willy out), he has no awareness of personal space that sort of thing. Basically, he's what you would call "eccentric" and I love him even more for it. The other children look at him as an oddity, which I feel very sad about, as you would imagine. He has some wonderful skills, fairly good at reasoning (with concrete things), astounding memory, can memorise bits of dialogue from tv or remember the exact sweets we bought 6 months previously. He has the most beautiful singing voice, and is a great dancer. I don't think he's intellectually impaired, just neurologically different.

If parent's views are one-sided, why even bother with a parent interview?

'I don't think he's intellectually impaired, just neurologically different.'

And he'll do well in life with a parent with that attitude.

I'm feeling more and more that prognosis for our children is everything to do with parental expectations and nothing to do with state-funded intervention.

Hi Doris, I found this website this morning ( sorry a bit crap with links) but google RASDN six steps of autism care leaflet. This lays out exactly how the DX process should work following the NICE guidelines. It may still vary from area to area but I wouldn't think it should be vastly different. Hth

2nd opinion time. Took us 4 years to get a diagnosis, so you aren't alone.

Places to ask for 2nd opinion (imho)
GOSH - cahms have to agree (blocked all my attempts 3 times)
Maudlsey Autism Clinic - cahms have to agree it (again my local cahms refused)
Newcommen Centre Guys (Gillian Baird or her minions).

Privately the 2 most reccomended options seem to be GOSH (can be seen within 4 weeks if you have the cash) or Daphne Keen (v. popular on here but you have to get past her secretary to make the appointment). IF you have the cash, I'd just go private tbh and save yourself potentially years of grief.

I absolutely agree with star that outcome is more related to parental ability to fight the good fight, than actual level of clinical disability in the child. It disgusts me tbh.

Great info - thanks. I'm sure CAMHS will block it as they could only be bothered to have a trainee observe my son a year ago in a class setting and the report wasn't very good/thorough or highlighting anything useful. Neither the CAMHS team or social communications clinic want anything more to do with my son - this all seemed to coincide with my declaration of having bipolar disorder. I will contact CAMHS again. We're seeing another paediatrician re my son's small size and gut problems - maybe something relevant there? I know many autistic children have metabolic and gastric problems, iron deficiency (which my son has) - maybe I'm making too many connections between my son and asd, but they do seem to be glaringly obvious to me (rather than anyone else at the moment). My GP is on my side but wants me to wait re another diagnostic assessment until I've seen this paediatrician. Fingers crossed I get somewhere.

On the NHS front Guys (Gillian Baird) will take a 2nd opinion referral from a pead and against the say so of cahms. Ask the pead to make the NHS referral to Guys before this avenue is blocked off too, as this clinic is getting a steady trickle of kids from kent/oxleas.

I now refuse to have anything to do with my local cahms as they did my family so much harm and actually refused an ados assessment 4 times over 4 years for my ASD son. In their eyes ALL DS's issues were down to my abysmal parenting . Since cahms were totally removed from the picture last year, real progress has been made in all areas for my child.