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

(84 Posts)
Oneconfusedmum Fri 28-Nov-14 23:25:01

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gestures etc & still does when he wants to please you- but when his grommets fell & his hearing detoriated he became withdrawn (around 2.3yrs).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I still think his glue ear can have impacted on his speech which could make him withdrawn which in-turn make him seek stimulation from running / climbing etc.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.

autumnsmum Sat 29-Nov-14 05:58:46

Tbh , I've never heard of a child misdiagnosed with autism , I have two on the spectrum and with my son initially it was said he wasn't autistic and he is. My dd was diagnosed at two and the cdc checked for everything else such as hearing issues and vision problems before diagnosis

chocismydrug Sat 29-Nov-14 07:30:46

I suppose it must have happened but I never heard of it either. It is usually the other way round - parents struggling to get a diagnosis (and it is a diagnosis, not a 'label'). and being fobbed off instead.

Your DS is still young. If his speech comes on and his other autistic traits faint away, you could always look at a reassessment I suppose.

For now I would focus in supporting him. The Asd dx won't do any harm. You actually may find that it is easier to access support with this dx.

2boysnamedR Sat 29-Nov-14 08:44:18

As above. The diagnosis will open more doors for help than if he didn't have that dx.

The dx will not give him autisum. In a few years you could possibly ask them to remove it but I agree with above, belive me it's so hard to get any help at all. This should help your ds get more therapy and help.

My son has many asd traits but he gets no help at all. Because has no asd diagnosis. The diagnosis he has is ignored

tacal Sat 29-Nov-14 09:16:34

I have found the diagnosis to be a really positive thing now my ds is older (age 6 and at school and having to be more independent at clubs). People don't notice his difficulties and the diagnosis helps me explain them to people and he does get a bit of extra support where needed. This extra support allows him to do well at mainstream school and mainstream clubs. He is doing really well and I think it is because he has the diagnosis. He was not doing so well before diagnosis.

I know two families that have doubted the diagnosis and asked for a second opinion not very long after diagnosis. One was changed from autism to aspergers. The other is waiting to be reassessed.

Greenbootsbell Sat 29-Nov-14 09:21:56

I felt like this when we got the diagnosis 2 years ago
I still flip in and out of agreeing with it
But it has opened up avenues of help that would not be available otherwise
Which means progress in school is better due to the extra support
So overall it's a positive thing

As others have said, can always get him reassessed when older. And if he does develop away from the diagnosis then it will be self evident anyhow

But in the meantime use the diagnosis for what it is - a means of unlocking help.

fanjoforthemammaries7850 Sat 29-Nov-14 09:28:39

It's not a "label" it's a diagnosis of a neurological condition. If he has SPD secondary to glue ear I'm sure that will be picked up. If he has ASD then there will be other features. Getting a diagnosis is a complicated process

Greenbootsbell Sat 29-Nov-14 09:28:49

It will mean he will get extra support in nursery
Try to find a really nice that is really inclusive and where they won't " judge" (sorry can't think of better word) but just take each child on own merits diagnosis or not (easier said than done but go round them, meet SENCO's etc)

fanjoforthemammaries7850 Sat 29-Nov-14 09:29:03


FridayJones Sat 29-Nov-14 09:42:47

Hmm, I'm torn on this one, I didn't recognise a lot of my dd's behaviours as autistic until the experts explained the rationale behind it. Some of the details are so finicky you would have to have them pointed out.
And I totally denied the first assessment cos "she was tired and hungry". Turns out it was spot on. Cos some asd kids only present symptoms some of the time.
Try the tony atwood aspergers book if you haven't already. See if anything resonates.

However, my friends ds is constantly being proposed as autistic cos "his eye contact and finds it hard to socialise" but guess what? He has minimal sight. White stick territory. But people with checklists to fill in keep suggesting it again and again.
I don't know, he may have an asd, but it's not as clear cut when sight and vision issues are involved.

mummytime Sat 29-Nov-14 09:49:41

But Friday would you friends son get a diagnosis?

My DD would not have been diagnosed at 3. At 9 it was a relief when the CAHMS psychologist suggested it on the first visit as something worth exploring. It doesn't prevent DD doing anything, but does give her some support and a lot more understanding. And we have a diagnosis to campaign from; so she can't be labelled "manipulative" "disruptive" etc.
Her new school is very good at prioritising her anxieties, as dealing with her worry over "a missing PE kit" prevents a much bigger problem later.

Oneconfusedmum Sat 29-Nov-14 10:19:37

Thank you all- Like some of you said we will know with time I guess - I feel he will be loads better once his speech comes.... I just wanted to know if anyone had experience of DC's wrongly diagnosed ASD.... I had seen a thread here on googling....
Yes ASD label brings help- but also the moment you mention autism, some schools backtrack. And I guess in some ways I feel a huge burden on myself for allowing him to be labelled when I wasn't convinced.

Oneconfusedmum Sat 29-Nov-14 10:22:34

Tacal- the families you know- did those children also have speech delay & did things get better when speech came? The one where diagnosis got changed to aspergers- I guess these Days they are all labelled ASD, rt?

PolterGoose Sat 29-Nov-14 10:23:35

Message withdrawn at poster's request.

PolterGoose Sat 29-Nov-14 10:24:56

Message withdrawn at poster's request.

Ineedmorepatience Sat 29-Nov-14 10:25:03

Please try to remember ocm parcels get labels, children with disabilities get a diagnosis to help parents, teachers and other professionals understand that they need specific types of support!

Ineedmorepatience Sat 29-Nov-14 10:25:41

Oh and later on to help the child themselves.

2boysnamedR Sat 29-Nov-14 10:42:29

Sometimes the language doesn't totally correct. Ds hasn't and won't. Has hasn't got a asd dx

Oneconfusedmum Sat 29-Nov-14 10:56:44

I am thinking the fact that his dad was so much like him at his age (glue ear,
Delayed speech, jargon, hyperactivity) must have a connection- those Days ASD wasn't diagnosed this frequently... And he did so well in life without any additional diagnosis/ help- it was just called developmental delay & he caught up quickly.
I guess only time will tell.....

2boysnamedR Sat 29-Nov-14 10:57:02

If you also think about like this. My son has traits of asd. I have chased a asd dx a few times. I keep getting told it's not asd. However that never took his asd traits away. He has asd traits but no asd dx therefore we get no help from school, no support from the nhs, no understanding from family. Yet the nhs still refer to these traits, there will never be a dx or help, but it still warrants discussion.

I do know many parents who tell their peadiatritions their child is fine. Those children were all discharged. They then went on to run out of school on numerous occasions but never got reffered back. Dispite climbing six foot walls and being chased across a field by four teachers.

I do belive one has ahdh so at some point he will either get reffered again or not. But the wait here is 6-12 months. His mum thinks his fine and everyone is happy to just say he is spirited. Maybe he is, but I was his mum personally I would prefer some safeguarding that would come with a dx

PolterGoose Sat 29-Nov-14 11:07:15

Message withdrawn at poster's request.

PolterGoose Sat 29-Nov-14 11:08:08

Message withdrawn at poster's request.

Oneconfusedmum Sat 29-Nov-14 11:27:53

Thanx poltergoose- I guess because my son was so easily diagnosed (after the first paediatrician told me that it was unlikely he has autism but because of the history of getting withdrawn when the grommets fell out she will refer me to the complex communication team) I feel this way.
Yes I realise we have to support him whatever & we are doing that- we are making sure he has an enjoyable childhood & at the same times he learns life skills.... We will see what happens... If it is autism it won't go away.

2boysnamedR Sat 29-Nov-14 11:35:47

If it is autism no it won't go away, but that's not the same as he can't improve. That's what the intervention is for. It really can help so much.

Again ds doesn't have asd but I never thought he would talk. It's amazing where he was to where he is now. Ok it's never going to be perfect speech. Don't loose faith

Greenbootsbell Sat 29-Nov-14 11:37:16

I guess it's screening schools for you
You wouldn't want him to go somewhere non inclusive with or without a diagnosis
Imagine - if he didn't have a diagnosis and went somewhere like that and problems emerged how awful that would be...

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