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gestures etc & still does when he wants to please you- but when his grommets fell & his hearing detoriated he became withdrawn (around 2.3yrs).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I still think his glue ear can have impacted on his speech which could make him withdrawn which in-turn make him seek stimulation from running / climbing etc.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

OldAntiquity - I'd personally push for diagnosis before secondary. It helps them and you work for a really positive transition. My DDs has been a dream, but if we hadn't all worked at it, there are so many points where it could have gone so wrong. Her gaining a "reputation" in the first few weeks. Teachers speaking a bit too severely to her. Not having extra support to help her understand the "unwritten rules". Even not being forewarned about fire practise, or introduced to sharp knives in a very controlled way (Food tech).

I fully expect my DD to go to University, possibly even a very top one. I also studied with people who with hindsight were on the spectrum - but they did struggle with understanding why and how they were different, and how to manage.

Thank you all for your thoughts & suggestions-
I guess what I was trying to say was I felt the multidisciplinary team relied heavily on one persons opinion - the letter only mentions what he can't do- parts of history which shows his strengths have been omitted. Yes they won't gain anything by giving him a diagnosis (or a label as I prefer to call it as it's not a disease)
I do plan to get him reassessed at some point- but we want to work on his speech first.

mummytime Thanks. Makes me feel sick to be honest. But actually two things you've mentioned will be flash points and that's the "unwritten rules" and if teachers speak too severely to him he will be devastated and unable to concentrate or take in new info and it will all snowball and he'll refuse to go. I can see it clearly. It'll be enough having to deal with other kids.

In hindsight, dh and I are on the spectrum, both seen as very able and with massive potential as children, both crashed and burned. I desperately don't want that for ds. In fact I was so sure that while having masses of potential he was also nothing like us and I was so glad of it and I don't really want to face the truth.

The dx process is hard and often heart breaking because it necessarily focuses on weaknesses, but omitting his strengths from the dx process doesn't mean his dx is wrong. All children have strengths.

Tambaboy - not sure if my toddler will get asd dx. His repetitive behaviours I suspect are down to dyspraxia. Both boys have enough asd traits but still told it's not asd. In two mind as to how hard to pursue that dx, as so far all dx has been ignored anyway - hence tribunal

When we went for our ASD assessment, both DH and I knew that DS has autism - it was obvious - but even we were shocked at what the report picked up. I remember the assessment with the psychologist and SALT and DS moved around the professionals as if they were furniture and screeched if anyone approached him - I came out of the building and felt sucker punched. I spoke to DH about the assessment as it was eye opening for me and he made excuses such as DS was not in his natural environment and he may have been distracted by the toys.

I'm saying even with a child we admitted was ASD, we were still in denial about the severity of his autism. I see it again and again on support forums that parents suggest the diagnosis is wrong, it is probably a speech delay, DC is just introverted/shy, I was like them as a child and I grew up fine - because all of these can be 'fixed' and ASD can't be - easier to have a language delay which intensive SALT will make go away rather than a lifelong neurological disorder.

Our family has gained the following positive things from DS' diagnosis:

1. 1-to-1 funding at nursery (including flexibility over hours so DS could attend 12 hours all year round)
2. Wonderful portage sessions based on his diagnosis
3. DLA (I know this is based on care needs but a diagnosis makes the path smoother)
4. Family fund money (again a diagnosis has helped with this)
5. A place at a special school just for children with autism (a statement is a pre-requisite of entry).
6. Acceptance from DH's family that DS has a disability rather than judgement about our crap parenting.

There are most some days where we are on our knees with sleep deprivation and feel we are at breaking point - but we would have had this anyway without a diagnosis. The difficulties my son has are as a result of his ASD but not because of his diagnosis. I'd be interested to see other posters experiences of diagnosis though.

I didn't know that's where you were atm zzzzz - us too. DS dx age 4 was social communication disorder, typically spikey autism profile but not severe enough for a full dx. The consultant said that it could change as he became older/social differences became more apparent with peer group/language got to a level where lack or not of language was impeding the dx, and here we are age 9 waiting for ADOS.

The waiting lists haven't reduced any....

Two year waiting list!! and in your behalf. It was around 2 months for us from referral and 2 further months for the ADOS.

it's bloody outrageous you all have to fight to get the professionals to listen.

Thank you all for taking time to reply- Gathering from all your experiences it sounds like the label can do only good & yes the funding will help him in Nursey to get some 1:1.

Zzzz- 2 yrs? I do not understand why we in UK waste so much time- yes I guess it's better to have the label & help (as he has issues & needs help) rather than problems & no help.

We had a 12 month waiting list - we put in a formal complaint and we were seen within 7 months.

DS had a speech delay, or so we thought. He had an ASD assessment and everyone told us he was mild. He also had glue ear.

I hung on to the hope that all he needed to do to be 'alright' was speak more. I thought speech woukd solve everything.

2 years later and speech is indeed his biggest problem but it only highlights what has subsequently been described as moderate-severe autism with co-morbid severe speech disorder.

Having said all of that my hopes are high for him and have currently no reason to believe that one day he won't take a handful of GCSEs and live relatively independently. But it will take work, and that work will be all the more harder if his rights aren't protected so obviously in law by his diagnosis.

No we just had a standard NHS Trust - tbf our complaint was very detailed and upheld by the ombudsman because the Trust broke NICE guidelines, NAP etc. It wasn't just write a complaint and get seen.

I'll be honest, I wonder often if my DD has been misdiagnosed.
Her speech (she is 6) and social skills as come on amazingly in the last year since the diagnosis.

She is appropriately now, has a great sense of humour and understands jokes, has no obsessions or repetitive behaviours, plays imaginatively and is holding her own (although about 12 months behind academically) in mainstream school.

She's developed and progressed so much that I think she presents completely differently to a year ago.

I'm quite happy for her to keep the diagnosis as it helps in additional support in the form of 1:1 assistance for some of the school day. She needs this in order to keep improving.

ASD outreach are involved but all their generic suggestions are pointless as my DD doesn't have problems with transitions, doesn't need visual reminders to keep her on task etc.
I'd rather she kept her diagnosis as it isn't harming her in any way.

I work on a diagnostic team and I would say we do sometimes make mistakes. You might be surprised how often it is not clear. I would say about 3/5 of children are easy to diagnose and about 2/5 are harder, and some of those have something going on, but it isn't clear whether autism is the best way to describe it. Others have ADHD or selective mutism or developmental delay etc. However, I would say that the children who are brought for earlier diagnosis (pre 3 and at 3) are less often the children we 'umm' about, because for someone to have noticed and brought them forward for assessment when they are so little the presenting behaviours are often clearer.

One of the reasons why lots of teams don't like diagnosing pre-3 is because other conditions can appear like autism in a preschooler. Diagnosing at, say 18 months or 2 is less likely to be still valid at 10 because there is more chance of error. But at very nearly 3 we would usually be more confident - but that doesn't mean we never make mistakes.

As others have said, embrace the help for now, and maybe ask for a reassessment further down the line if you continue to feel that it is not the correct diagnosis for your child.

This is a great thread and should be stickied IMO.

Reffering back to the poster who was despondent about the lack of strengths in the report, our SALT wrote:

It is recognised that DS a has areas of strength. However if this report appears skewed toward DSs difficulties, this is only to enable those in his life to better understand his needs so he can be supported by appropriate strategies.

DS dx took just under 12 months. However during that time he saw SALT, OT, Ed Psych, 2 paediatricians, specialist nurse for anxiety and had input from SEnco and school teachers. Each person highlighted areas that I'd not considered or picked up on. I'd had no RL experience of ASD so all of it was an eye opener at the time, but now makes perfect sense.

The other thing to remember is that it is a spectrum of conditions, some people will have stronger traits in areas than others and some may be absent, e.g. My DS makes good eye contact, is coherent and intelligent, very loving and tactile, and shows empathy to others, but struggles to make sense of the world, gets very anxious and has massive problems with sensory inputs. He has for the last hour, been stripped down to his boxers and is running backwards and forwards the whole length of the house touching each window.

'ASD outreach are involved but all their generic suggestions are pointless'

That seems to be a regular theme on here.

Glittery that's wonderful news about your daughter. Without being the voice of doom though, girls are really good at masking so maybe she's getting better at working round? God that sounds so bloody negative, sorry. But you know what I mean.

I have to say I went out with my daughters special school today and there was definitely no masking amoung the girls

Op-if you do decide your son does fit his ASD diagnosis, you may find you don't like the term 'label' much. I certainly find it offensive-a label tells you what something IS, my son is many things and not just defined by a label. He has a diagnosis of a neurological condition.

I'm sorry you're going through this stressful time. like everyone here, i cant possibly comment about your ds, but to give another perespective: when ds had his assessment when he was 3.6 we were "offered" the dx of asd, as the team felt he was 'borderline'. Assessment and diagnosis isn't always a black and white thing, even though the ADOS is a numbers-based questionnaire. We took the diagnosis, as we knew that he would be the same child with or without it, and knew that the 'label' might actually be helpful in the future. As someone has said, it isn't the dx/label that gives your child asd, it's the asd that does that. What mattered far more to us was, and is, recognising his individual difficulties and addressing those, and we had startled ABA therapy before he was actually diagnosed.

In the US there is the PDD-nos (pervasive development disorder not otherwise specified) diagnosis which isn't used here, but is more of a catch-all for communication/developmental disorders, and i suspect my ds wouldbe been diagnosed with that if we were in the states. I also wonder one day if the generic asd umbrella term will be broken down into much more specific and discrete conditions one day.

Fwiw ds is now 7yo and can seem so near NT that we now have the situation where we struggle getting school, and even family, friends etc to remember and recognise the difficulties that we see. If assessed now he might not be given a diagnosis of asd, but I am 100% certain he has it, and am glad he got the dx when he was younger.

I also knew a family whose ds was showing clear signs to me at the age of 4 or so, but he was assessed and categorised as not having it. The mum was jubilant about it, as if scoring 49/100 (no dx) as opposed to 50/100 (dx) meant he was just fine. His lack of dx didn't stop him having huge difficulties, and they are really struggling now to get him support without that 'label'.