So confused! 2 days, 2 different professionals & 2 completely different opinions re: asd!

[osospecial]

Ok so had first OT appnt yest and posted about how it had gone well and how I thought she had really understood dd. she said really early on she was surprised dd hadn't had dx of asd and thought she showed enough symptoms. She said she will put this in her report and send copy to paed suggesting dd be assessed quicker than 2 yrs time. (Paed not sure about asd as no issues with routine just speech and communication)

Ok so today we had an appointment with a Biomedical doctor and nutritionist who said, also quite early on, he didn't think dd has asd. He looked in throat and said it was red ( think he said strep throat) and in her ears he said there were small bubble type things behind ear drum which is stopping her hearing clearly. He has put her on dairy and gluten free diet and referring to ENT and doing hair, urine, stool and blood tests.
He said it was really good news and I want to believe it but my head just feels like its spinning really fast at the moment!
I'm confused as it doesn't explain things like the fact that dd babbles to herself in her own world not to me as if trying to communicate and also the fact that she completely ignores peers and has never even tried to play or even give eye contact to them. She is better with adults. And she is getting obsessive with things. the OT is not the first person to suggest dd has asd. Also we started this whole process in audiology but dd was discharged over a year ago. Feel like were going in circles.
Obviously I'm going to take this advice and follow what he says and see what happens and if this is right then it is really fantastic I'm just struggling with these two complete different opinions. I guess if he is right then all dd issues can be 'cured' and I'm scared to believe that in case it's not true.

I totally agree dd needs to be seen by a asd specialist to get a proper assessment

Oso, this sounds so confusing and frustrating. It must be hard to have two year waiting time for ASD assessment.
I'm just wondering about the paed's interpretation of the third triad; i.e. based on routine? Not that I have any expertise, but from what I have read, this impairment is wider than just difficulties with routine, and girls seem to have different presentation than boys.
My DD has no problem with routines at all, and so far no big sensory issues. I emphasised this at every appointment (paed, SALT, OT etc). She had the ADOS a couple of months before her fourth birthday, and I stressed this again. She got dx of ASD and speech & language disorder on the day. In relation to the third triad, the dx report refers to the clinicians' observations of "literal interpretation", "concrete thinking" and "need for order". Not a mention of routine!

DD has glue ear/fluid as well and she had ENT consultant appointment this week. She had another hearing test done on the day, and a session with the SALT. Consultant said that although she has fluid, it is not affecting her hearing and that her sounds are mature; so grommets wouldn't be beneficial, but they will keep her under review.
What do you think about dx? I have to admit I was ambivalent towards it at first, but I don't have regrets now - it has been helpful. If you feel it would be helpful, I would maybe ask the paed regarding the wider behaviours in the third triad?
Good luck with everything - hard to believe primary school is looming!

I would echo marchduck dd2 is not hung up on routine, Particulatly. But, to use her Paed's description, she is 'rigid in her outlook'. Paed thinks 'probably ASD' (waiting for ADOS, 18 month + wait here).

writing to DDs gp with his opinion and telling them to refer dd to ENT on NHS

would love to be a fly on the wall when that letter gets read

Hi marchduck, thanks for your post. Since the paed last saw dd she has started some behaviour that the OT said was her way of controlling her environment (basically she likes everybody to be in their seat and gets upset if they get up and move around, she goes and drags them back by their hand) this happened in the appointment yest, today, on weekend at my aunties house, even in the waiting room today she tried to move a stranger to a different seat, lined up by us!). The OT explained the lack of routine as DDs need for new experiences and constant sensory input outweighs the desire for routine. She is the opposite, instead of being afraid of change she is constantly on the go, looking for it. This explains her constant climbing etc as well. I think this might make a difference next time we see the paed along with the OT's report.
Like you say about the dx, I was happy to 'wait and see' before as I didn't want dd wrongly dx but now I think it would be helpful, in particular with school issues.
Dd started school in an assessment unit for 2 terms in March on a part time basis (we are in Wales so start school term aft 3rd birthday) and.she is enjoying but there are some issues with tantrums when she doesn't want to do certain things!
When does your DD start school?

The whole point of specialisms is that someone spends time training in a narrow area of practice.

We also see him and our experience has been positive. I know he also sees lots of other patients as well, majority of them with ASD. So as per the sentence mentioned, he should know what he is talking about.

Oso I am by no means defending his suggestions what he said about your dd not having ASD, as he is not qualified to suggest that. It is a private practice after all so they generally try and put a positive spin on things. He can't cure your dd of ASD, but doesn't mean that he can't help either. I didn't want to post as I know Biomeds are not the done thing on this board, but I thought comments about him were a bit harsh IMO.

oso, has Dd had a hearing test recently?

my dd had glue ear and her hearing was down.

as for the routine, Dd's autism is pretty severe but she does not have issues around routine either

dev9aug there is a huge difference between seeing a lot of children with Autism and therefore knowing some stuff about them as a group, and identifying which children out of a selection have autism.

Of course he can form an opinion about the autistic children he sees, but he is in no way qualified (from his GMC profile) to diagnose or exclude autism.

Dev9 thanks for the post, it's good to know you have had a positive experience with him. I hope there is something in his suggestions that can help dd, the more I think about it, the more I can't see how he could put ALL DDs symptoms down to a hearing issue (and tbh he doesn't even know them all as the form we filled in was more about health issues) but I do intend to follow up his suggestion about going back to ENT and about vitamin supplements.
Choc-no she was discharged from audiology about a year ago so could be good to check out her hearing again

I have been there and bought the T-shirt with the ASD vs hearing issues.... for four years. It is eye-wateringly frustrating.

There is a school of though that hearing problems are more prevalent in the ASD population.

There is something known as 'diagnostic overshadowing', believing that one diagnosis explains all the problems.

There is another poster on here, NoPinkPlease, who has a child with hearing loss and ASD. It's not beyond the bounds of possibility. Takes a good deal of professional unpicking to sort out what is what though.

Yes, I can very much identify with the controlling behaviours. DD is mainly very compliant -but there are definitely things that she is seeking to control Little wonder that I am tired most of the time
DD starting primary 1 in Sept - YR equivalent. Can't believe it!
Have you had any feedback yet from the staff at the assessment unit? would the OT be able to observe/assess your DD there?

to all...who bash up biomed...Dr Goyal is v v good doctor. He has helped a lot of people. I see a biomed doc in USA and it has helped my dayghter maximise her potential. oso...pls take the doc seriously. I am happy to explain any biomed theories if people are a bit confused. it takes time to warm up to it but there is no harm in trying...these are not invasive measures and are backed by new scientific research

Marchduck, I've had some feedback about the tantrums and the fact that she won eat at snack time but we are working on those. I think the OT would be allowed to see dd at the unit so that might be good idea, it could help the staff see why the tantrums are starting.
Thanks Zumba, it's good to hear positive things about the dr, I will be following up what he said about DDs ears and throat to see if there is a hearing problem still contributing. I am very worried about her speech so it's def worth investigating.

I'm not bashing biomed. I'm bashing any doctor who strays outside their area of expertise and starts diagnosing ( or excluding) things they are not qualified to do so.

Same here, this doc appears to have excluded ASD which is not in his remit. And certainly not something to excluded on the basis on a single one-to-one consultation in the case of mini oso (unless you are Daphne Keen, I suppose!). Also the diagnosis of strep throat on the basis of an asymptomatic redness, leads me to raise an eyebrow........ the rest of it (food intolerance theory, link with gut flora and behavioural symptoms, dietary measures) I don't personally get on with BUT, am not criticising.

I agree that he should not be diagnosing either, that bit was out of order.

I don't agree that his suggestion of restricting diet is very extreme. It is very widely accepted that GFDF is very beneficial especially in kids with ASD. I am not just talking about alternative therapists either. This was mentioned to me by a Gastro Paed at Chelsea and Westminster. BTW, our NHS dietician and local Paed are extremely supportive of this as well so it is not as extreme as you suggest. We started GFDF last september as well and I wish somebody would have told me how easy it was so we could have started earlier because the benefits have been huge.

Oh BTW, we didn't get involved with Biomends to 'cure' DS1's autism, but for his constipation as this time last year he was doubled up in pain and nothing with NHS was working. Today he is free of pain and his constipation is not cured but its under control. Oh the imrovements in his communication skills just happened to be a positive side effect...

And you have to put this in context, NHS can string patients along for as long as they want. With most patients seeing him privately, they don't have the luxury of seeing him every four weeks as it is expensive so he has to suggest the most effective course of action there and then in the first appointment or parents won't be coming back to him.

How could he eliminate ASD as a possibility when he was looking at physical, dietary and environmental triggers only You need a swab to diagnose Strep throat iirc and usually needs swift treatment with ab's. Maybe the diet will help but it does seem all very convenient.

NHS can string patients along for as long as they want

dev9, I've never criticissed one of your posts before, but this simply isn't true. Hospital doctors aren't allowed to bring patients back without clear reasons any more. see this. And the last thing an overloaded GP wants is to see someone again without good cause.

criticissed. Oops

I'm not sure about the strep throat thing, he did say it was red+i think he is going to ask the gp to do swab, he hasn't prescibed us with any medication. I'm just waiting for a report now that summarises what he said as it was a bit confusing, he was talking to the lady nutritionist that was present and jotting notes down and talking out loud about the strep throat thing. The info bubbles behind the ear were more definate and directed to us but he didn't prescribe anything for them just reccomended gng bk to ent. I'm just confused at the asd comment, esp after hearing the opposite the day b4 and I don't think he had enough facts to make the assumption tbh. But if he's right on the fact that her hearing is down it would help explain her speech troubles and that's great

Mareeyaa I will put my hands up and say that I have not had much experience of GP's as ds1 was a premmie so we have always been under the care of a Paed so when I say NHS I mean Paed/salt/OT etc.

Based on my personal experience, I do think they do keep saying patients again and again for not a lot of progress to show for it. The last time we saw the NHS Neuro Paed for ds1 she was actually surprised to see progress. (It was not a lot I should add) According to her, she normally sees patients with ASD who generally kept getting worse every time she sees them. this might also have something to do with the fact that the LEA is very anti ABA

I am not as articulate as some of the posters on this thread who massively respect and don't want to fall out with so before I dig myself another hole, I will stop now because it sounds like I am defending what he did which I am not. He is not qualified to dx or rule out ASD, full stop.

dev, none of us are falling out

It's simply that (speaking only for myself) I passionately feel that parents of pre-diagnosed/newly diagnosed children are so very vulnerable, that they should never be put in a position where they are anywhere less than clear on the qualifications of a professional to hold an opinion.

A biomed doctor with a background in occupational and environmental medicine is not a developmental paediatrician and is not qualified to rule out ASD.

If he had said 'I hope you get to the bottom of your concerns about ASD very soon. Regardless of that, evidence shows that x, y, z can be helpful in reducing some of the difficulties your DD is showing, would you like to try that?' I would not have any comment to make.

Pressed post too soon.

What these Doctors need to realise, as any health professional, is that they carry weight to their opinion, which is a huge privilege.

It doesn't matter if it was an idle musing to the Doctor in question. A patient's mother has come away with the impression that ASD has been ruled out. It shouldn't happen unless the person is directly qualified to rule it out.