Autism assessment / SALTs are convinced but...

[NoPinkPlease]

Oh I don't know... Just need to randomly splurge thoughts. My ds (5) is poss ASD, glue ear, Speech delay, poss attachment disorder. He's settling in to school finally, in process of statement and making progress. Had ADOS and 3Di assessments in October, and came out as ADOS says ASD and 3Di says not ASD. So unable to make diagnosis.

In the follow up, it was clear to me that the SALT that did the assessment and the SALT we've had lots to do with are convinced its ASD. We agreed to retest in 12 months, means that the ASD team don't swing into action but that's it really.

Then Edpsych says it's attachment disorder which has come from persistent and undiagnosed moderate hearing loss to age 3 and from prem birth and separation from me. The limited info we get then resonates more than ASD ever has. Am completely aware of my own bias here, hoping it's not ASD.

Today, the old SALT says she wants to push for ASD reassessment in 3 months from now. DP agrees - I wasn't there but I don't mind.

But, I just feel like the SALTs are pushing for ASD when there seems to be so many other options. The 3Di assessment came out strongly as not ASD based on my answers to the questions. I don't know whether I should be doing anything else now... Should I be pushing for CAMHS to look at wider options. Are SALTs ever wrong! Am I in denial? Argh - should I just let them get on with it? Any advice very welcome. Sorry that was so long...

Meant to say that it wasn't a big fat positive ADOS, it was no on a few things and borderline on others, if that makes a difference.

NoPink, I feel your pain. But being mercenary about it, will the strategies be any different if it's ASD or AD (not sure about this myself) and which DX will bring the most support for your DS? I know of an adopted DC who had AD as her DX, this has recently been changed to ASD with PDA and the support seems to be greater for her now. I know it's supposed to be dependant on need not DX, but...

Nopink this sounds like a confusing situation. What I am getting from your post is that the input from the Psychologist/Paed is notably absent... diagnostic tools are one factor to take into consideration, they are not the be all and end all, clinical judgement has to be a major factor based on all the assessments done including the actual reasons some of the ASD questions were answered the way they were. Plus do bear in mind that different diagnoses will come from professionals with a different emphasis, so often what you get, depends on who you ask...

Moderate undiagnosed hearing loss can cause major problems, but would those problems would likely show a very speedy catch up if there were no underlying issues. Also lots and lots of babies are born prem and don't end up with attachment disorder (or is there more to the separation than extended time in neonatal unit?). Are you happy with the professionals who are conducting the ASD assessments? Do they have anything to add in terms of their judgement/wisdom/experience/observation of your ds? Which one of these professionals really understands your ds best?

Personally I would be hesitant about accepting another ASD assessment if it is just going to be with the same people and cover old ground, because nothing concrete seems to have come of it so far (sorry if this is too strong). Surely something different needs to be done with a new assessment? Would you consider asking for referral to a tertiary unit? Might be better than going round the houses?

More questions than answers there, sounds frustrating. Good luck working out a way forward. xxx

Thank you - that's really helpful - nice to just feel I'm not completely bonkers. I'm going to contact the 2 SALTs and talk about different assessment options. It was at the follow up to the last ASD appt that I asked whether we'd got all the assessments we needed as the clin psych hadn't really spent any time with my ds. I really like the 2 SALTs involved but I think they know about ASD and not wider anxiety / AD / other stuff I don't know about either.

Completely take the point about support - it's so tempting to overegg his behaviours to get the ASD diagnosis and watch the ASD support team swing into action but... Something just not quite right.

There's nothing more to the AD suggestion other than it could have arisen from the double whammy of separation then lack of security from not being able to hear and know where we were. It's the fact the hearing loss was undiagnosed for so long that meant we adopted strategies for behaviour / expectations that were completely inappropriate and I think contributed to anxiety... hindsight...

are you saying, noPink that ASD assessment was concluded without the clin psy spending time with your ds? Have I got that right?

also why not speak to the SALTS about what experience they have of AD? You might be surprised and it might help you shape where to go next. Good idea to discuss further assessment options.

Sounds like you just need to do some digging to get what you need from these profs........ good luck xxxx

Yep, the clin psych watched my ds in a classroom for about 20 mins i think but didn't spend any 1to1 time with him.

I have taken action and sent a joint email to the SALT who we've known for a couple of years and the SALT on the ASD assessment team - asking for a meeting to talk through options with them... But this time I shall not be fobbed off. Thanks very much for your help :-)

Just wanted to let you know as you were all so helpful, that I've been persistent and got ds a 3 hour home visit assessment with a consultant clinical psychologist and SALT coming to do ADOS again with me there too so we can work around the delayed speech with me translating as needed. Feel so much better about it now. If we do get ASD diagnosis now, it won't be cos that's all they looked for. Appt is end of March, will no doubt be back with more angst then... Of course, draft statement due before that so may be back sooner rather than later...

Thanks again.

That is good news, NoPink. Well done and good luck xxx