Could DS be misdiagnosed as ASD? I am worried the label may do damage.

[Oneconfusedmum]

So DS got ASD diagnosis couple of weeks before his 3rd birthday. He is minimally verbal or is it non-verbal (has a few words, uses them ocassionally)
There is a family history of speech delay (dad & uncle spoke first words at 3-3&1/2 respectively- both are doing well & don't have any autistic traits except they can be bit reserved). Also DS has had glue ear since baby days- not quiet resolved as Grommets keep falling. His comprehension is good- both us & Nursery feel that- however during assessment he was not in a mood to listen (he was tired during all the assessments due to them being close to his nap time)
He used to be social/ used to imitate gestures etc & still does when he wants to please you- but when his grommets fell & his hearing detoriated he became withdrawn (around 2.3yrs). He does have hyperactive tendencies and in the absence of stereotypical behaviours the diagnostic team labelled his running & jumping repeatative- he doesn't do any of these for hours but does tend to do them when he is bored. It's easy to distract him from these- so I never thought they were repeatative & restrictive. He does play appropriately with toys, but only briefly- his attention span is short (but they said he was too young for ADHD diagnosis)
I still think his glue ear can have impacted on his speech which could make him withdrawn which in-turn make him seek stimulation from running / climbing etc. wether there is an element of ADHD in addition to the speech delay.
I am not sitting & doing nothing- we are doing PECS & interaction as per NHS advise -I have read ABA can be good for ASD as well as developmental delay & we are looking into it.
But guess on some level I am worried wether the ASD label will harm DS's future where he maybe rejected based on it without actual assessing his potebtial. I am not in denial, I do know he has issues. But also I feel he has so much potential. I am also concerned how the so called 'specialist health visitor' tried telling me how all his beahviours were autsitic on her first visit- I feel as they had sent her to do the parent interview the panel gave too much weight to her opinion.At ADOS he wasn't his normal self, but they didn't particularly hear me out when pointed it out- for example he does have joint attention but if he is distracted by all the toys in the assessment room- he doesn't listen.I feel the problem is inability to process auditory stimuli. (APD secondary to glue ear)
Sorry for the long ramble, but my question is can children can be misdiagnosed as autistic when the underlying problem is something else. Anybody with any experience of this? I felt the panel of 'experts' were in a hurry to give him ASD label.

Thank you all. Yes I am keeping my faith in him- but it's
hard at times to not get bogged down by it all. I hope we do all the right things for him.

I know it's hard not to get bogged down
It was recommended on here to me - mindfulness - can really help. Also do as much as you can to look after yourself. Obvious statement I know but really important.
Writing the above as a reminder to
myself!!

My son got an ASD DX at 2.5 years and he had on going glue ear too. He's autistic without a shadow of doubt but I really did everything I could to check out his hearing and get the right grommets. My son got triune grommets in the end-they stay in for longer. It's also really worth getting a private hearing test to see what your son's hearing levels are. ASD or not, if his hearing is impaired it won't be helping his speech development. If his hearing is OK, then at least you can stop worrying about that.

He is having his hearing test again under anaesthetic as they were not sure of his wake hearing test results (like I said he can get easily distracted). They confirmed grommets are out & glue ear is back- So unlikely his hearing is going to be OK.
Zzzz- I guess that's what surprised me- they haven't given too much weight to parent/nursery history... We both told them he doesn't have repetitive behaviours- so they said his 'preferred repetitive behaviour is movement related- he was noted climbing on couch & sliding off it at home'- won't a lot of 3 year old boys will do that? If he was speaking & I had gone & told them he likes to climb & slide they would have probably laughed at me!

youre clutching at straws.

your ds is under no obligation in his life to mention his asd if he doesnt want to later on.

You can still have autism but have speech and communication as your main needs.

They are some kids who do fit the criteria for the ADOS- autism assessment- but they do not get a diagnosis, so it depends.

The only difference I can think of between a child who ONLY has a hearing issue vs a child who has ASD as well as a hearing issues- is the amount gestures that they use and other things as well.

zzzzz I feel in my borough that they do over diagnose young kids with ASD.

"We both told them he doesn't have repetitive behaviours- so they said his 'preferred repetitive behaviour is movement related- he was noted climbing on couch & sliding off it at home'- won't a lot of 3 year old boys will do that? If he was speaking & I had gone & told them he likes to climb & slide they would have probably laughed at me!"
The key thing with repetitive behaviours is how often they are repeated. How long would he keep doing this for? I would expect maybe 2 or 3 times, at the most a couple of minutes, and then be easily distracted to something else. However once he starts to do something how easy is it to distract him to something else? Does he keep returning to something?

The repetitive behaviour can be something "normal" but done an unusual amount. Lots of girls have trouble being diagnosed because their interests are "normal", such as pop stars or animals, but they are just rather more thorough.

There are areas where diagnosis is a bit more common. This could be because the professionals are more clued up. Or because the parents tend to be high earners, which means they are more likely to be highly numerate/scientific, which seems to be related to more chance of Autistic traits, maybe.

If professionals are seeing it you should be pleased. There are lots of parents who see issues, but have to fight for years to get the professionals to see it. Getting a diagnosis opens a lot of doors, and early help can change lives - and prevent a lot of problems. It isn't easy to get.

You are probably going through grief - but this doesn't stop your little boy still being the wonderful person you know. It might just help explain some of his behaviours, and get him help he needs.

My daughter wAs diagnosed at two and her repetitive behaviours were and are the same as boys with autism, she doesn't have special interests , she likes repeatedly opening and shutting doors

ASD is more of a label than a diagnosis in ways, as there are no objective tests or 'signs' to be proven, such as testing someone's blood or urine. The 'diagnosis' is based on matching behavioural observations to what's known about the condition based on best available evidence (both specific to the child and up to date research). The panel/team approach exists because it is quite a subjective process, when all is said and done. The professionals can only work on the basis of what evidence is available.

Having said that, misdiagnosis by a multidisciplinary team is pretty unusual. It's probably more likely in countries where one professional diagnoses alone.

Label is just a word, it doesn't have to have those connotations. Language is highly politically charged, it's true.. some people, for example, don't like autism to be classed as a disability. We all put our own interpretations on words based on our experience and personal interests and biases. I don't think it invalidates the experience of being on a particular spectrum to say it's a label rather than a diagnosis but then I don't think using a pathological medical term validates the reality of autism either. I think whatever you call it, it hopefully opens the door to someone being seen for themselves, as an individual, with particular behaviours that may require support, awareness or intervention depending on how they impact that person's life.

oneconfusedmum, I know how you are feeling, I went though the same a couple of years ago. I did think long and hard about seeking a second opinion for DS, I might still do in the future...

Our situation was slightly different as ds was already 5 when ASD was discussed. I knew ds wasn't a typically developing child, but I was expecting dyspraxia and maybe something else like Sensory Processing Disorder because as in your case I couldn't see any restricted interests and repetitive behaviours.

Ds' s SALT and school supported the dx and was left feeling everyone was conspiring against us!
I was so adamant he didn't have ASD that I demanded proof . They agreed to carry out the ADOS. He was his normal self that day, so he scored highly in everything apart from restricted interests and repetitive behaviours where he scored the bare minimum. The dx was still confirmed and I didn't feel I could argue with it anymore at that point.
Don't get me wrong, I wasn't rejecting ASD because I thought it was a bad thing, I just didn't think it represented DS and it would lead to the wrong support. Saying that, ASD dx has helped get an EHC plan and we are trying to get him the right support based on his individual needs so that has been a positive.

Btw zzzzz , I didn't know they weren't physical tests to diagnose Crohn's disease and I have 3 close relatives with the disease!!

I think the repetitive behaviours one can be hard to see sometimes when your so close. My toddler spins, wears my scarf and falls back wards off the sofa. I didn't really think much about it. Till it was pointed out by portage. He does it to get that sensory feed back.

2boys, yeah my boy definitely does that sort of thing, repetive noises, bouncing up and down his Swiss ball for the whole duration of a film, but I always assumed it was due to a sensory need rather than the need for repetion. ..I probably not explaining myself very well...

zzzzz about the teasing. I was thinking that Crohn's it an awful condition to have, there better be no teasing about it !

zzzzz thats why ASD is diagnosed by a Multi-disciplinary team or a Development Paediatrician. There is a doctor involved in the diagnosis - even if as in my DDs case she was only seen in person by the GP and a Psychologist (specialist).

Maybe another technique that might be helpful is - look at the diagnostic criteria. Could you come up with something for each of those criteria if you tried really hard?

Just thinking about the last line of your OP - what would the panel of experts gain by being in a hurry to give a small child an ASD diagnosis?

They don't get a govt subsidy for successful dx (as has been discussed for GPs spotting some other health conditions early). A dx doesn't save money, or time, or resources - all quite the opposite. And you are pretty far from the Daily Mail beloved stereotype of a mother pushing for a diagnosis... So what's the benefit to them of misdiagnosing?

Yes, I suppose mistakes can be made and children can have bad days. But usually that's to do with degree - my DS did not receive an autism dx when he was 4, but he's being re-assessed aged 9 and most people who've seen him recently believe he'll get an ASD dx. It's not without the bounds of possibility that your DS has speech and language delay due to his hearing, with a few autistic traits that may not have got him a full dx on a good day. But my DS gets no support with his current dx. None, zip, nada. If he has been over-dx'd, you're in a good position. But I honestly think the likelihood of that is very, very slim.

"but also the moment you mention autism, some schools backtrack."

You could also think of it as a useful filter. I wouldn't want my NT children to go to a school where those with autism weren't welcomed, never mind a child with SN.

My son was easily diagnosed, a preliminary diagnosis (with hearing, genetic testing, SALT & portage to see him) on the first visit in April. I finally read the report from then in October when he was given a firm diagnosis and I was so surprised at how absolutely obvious it was! I was still unsure and "suspected" and had been shocked that one paediatrician had said it so blatantly after one visit! But in hindsight, it really was obvious.

And as a diagnosis, I LOVE that it's there in black and white. He's starting nursery after Christmas and so they all know, they can apply for funding for a 1to1 for him, from their earliest interactions with him they know. I can specify so many things that won't be taken as "fussy parent" but as firm things to make his time enjoyable and to actually allow his teachers to enjoy him without having a confused and distraught child on their hands. And that will allow him to reach his huge potential.

I understand your worries though. My ds1 is less obviously on the spectrum, but it's obvious to me now he is. Everyone used to mention how hyperactive he was as a child. But they weren't restrictive behaviours. However, he STILL at 10 and nearly 5 feet tall throws himself around the living room, no matter what the sanctions he cannot help throwing himself around. So what's appears normal for a small child can actually be a subtle manifestation of behaviour. I wish I'd known things back then because while he's in a fabulous school now his last school was disastrous for him and if he'd had a "label" we all would've known why a supposedly typical child was getting into so much trouble, having meltdowns on the way home and screaming and wrecking his room and wanting to be dead, at 7. But I'm still reluctant to get him "labelled" even though he may have problems transitioning to secondary. It's completely irrational.

It can be really hard to see things in our own children that are obvious to others. It's only since ds2 was diagnosed I realised ds1 has never done imaginary play. He seemed to play, but since Portage explained to me about imaginary play, well, no. He used to line his cars up or crash them together to see who was the winner.

The school he's at says that children with autism do very well there so no wonder he's thrived, as do children without autism! In fact they get as good SATS results as the school which actively discourages SN children. One of those schools has fantastic inclusive teaching, the other relies upon the fact it has a reputation which filters out parents who aren't hugely involved and so relies upon outside factors for its "success".