Has anyone suspected of ASD not been found as having ASD?

[Corinabloomer]

Sorry my question might sound confusing, just want to know if any kids with suspected ASD, having gone through the diagnosis path, have been found as not having ASD?

I have some slight suspicions about our 5 yo DD, but because she's not struggling with school, friendships (yet), I do wonder if these are just quirks or whether she should go through an assessment as she might struggle later in life? Or might be something else?

I'm so glad to hear that! Hope he continues to thrive.

My eldest was diagnosed clinically with ADHD but ADOS said no to ASD. Both I and school disagreed with this, so once they were titrated onto medication for ADHD, the ADOS was repeated and found very clearly to support a diagnosis of ASD alongside ADHD-combined type. My child was the first girl in our local area to be diagnosed with the two comorbid conditions, so I do understand it wasn't something they had encountered before, but am glad I pushed for reassessment.

My youngest was uncooperative during ADOS and unable to give a full picture to support diagnosis of ASD. She had been seeing CAMHS on a regular basis for a few years by this point, and they knew something was going on. We ended up doing a different assessment with the head psychologist at CAMHS which was more indepth and looked at past behaviour as well as present - think it might have been DISCO from what I've read since. Again, she didn't fit neatly into their expected boxes, but she was eventually diagnosed with ASD with demand avoidance, which makes sense.

I was the same over my dd wondering if it was asd or just her little quirks like I was waiting for a sign that it was definitely asd, then when I spoke to sen teacher she put referral in straight away dd is 8 now and isnt able to mask it anymore. Like you I was more concerned about when she gets older and what her to get the support she will need. Assessment waiting times is ridiculous by the time she's seen it may be more obvious Like with my dd.

We ended up with ADHD and other diagnoses first... but I knew that the correct diagnosis was ASD due to family history of an atypical presentation. I should add that my DC's school absolutely opposed any idea that my child was neurodiverse for a long time. They have since apologised and hugely changed their ideas about ASD and presentation, partly due to our experience (which is great for the children following my son).

You really need to trust your instincts and learn as much as you can. It sounds like you are in a very good place though and will be able to advocate for your daughter.

kittensinthekitchen that's interesting, ASD with PDA here too. Was uncooperative too in the first assessment (and masked for England...).

No got any advice but I'm in a similar position with my five year old. She also has some other issues glue ear and hearing difficulties and waiting a course of speech and language therapy. These will likely happen before the neuro-developmental teams assessment so I suppose i will be able to rule them out or see if they are the cause of some of her behaviour.

Here’s a link to the white paper I mentioned:

https://autisticgirlsnetwork.org/keeping-it-all-inside/

Thank you, I'll have a read!

@Corinabloomer think a “busy mind”, anxious, fidgety, can go off on tangents, answers are often outside the box. My son presents probably more like girls with ADHD. Highly intelligent and well behaved so knows he needs to sit still etc, however, then internally that puts a huge strain on him, because he’s having to permanently suppress his natural behaviours. He’s also clever enough that if he doesn’t actually listen to the teacher in class all the time he can work out what he needs to do from 50% of the time he is engaged.

So I think it could be missed as he doesn’t present like a traditional boy with ADHD.

@Corinabloomer a full cognitive test can also be helpful before assessment. So, for example, ASD was questioned in my child because they talk “like a little professor”, but his verbal iq is off the charts so it’s not actually unusually that his vocab and speech is far more advanced than peers.

About to do a combined assessment for DC1.

I have suspected ASD since 18 months.
Last year’s teacher also suspected ASD (KS1)
This years teacher suspects ADHD (KS2)

No one has ever accused DC1 of being NT 🤣

Oh bless him! ❤. It must have been so incredibly hard for him to mask it for so long.

I'm glad you got the right diagnosis and hopefully he is getting the support he needs.

Like a few others my DS didn’t get ASD diagnosis ( was described as borderline) but did get ADHD, OCD, anxiety and ODD diagnoses ( which is enough for anyone …). He was described as a particularly ‘spiky and contradictory profile - which did make me laugh as it kind of sums him up!). Also commented he presents more like female ASD ( I do again wonder about all this if there are boys who also get missed as their ASD traits equally aren’t ‘typical’ - if there is typical).

His paediatrician has suggested we might want to get him assessed again now his ADHD is medicated.

Yes lots are told they haven’t got ASD, there were 10 in my d school year, that were told they don’t.

This happened with my DD, she's 7 and definitely acts young for her age. It only became obvious this year as she's autumn born and I think it was hidden in the normal variation until now.

Yes, my son. I was dubious at the time, and thought further testing/experience would eventually show it, but I was wrong.

He does have a neurological disorder and ADHD though. He is now an adult and doing great.

Not quite the same, but I took ds to be referred for ADHD, and the initial assessment said not ADHD but ASD.

After he'd been diagnosed with ASD, they then asked to rerefer him for ADHD and he was diagnosed with that too.

Both conditions at the final assessment they said that they were undecided whether he would meet the diagnoses or be "with ASD/ADHD traits". Both they decided he met the diagnoses.

Lemursandions look into ASD with PDA traits if you haven't already... some children are misdiagnosed as ADHD with ODD, which isn't helpful as ODD and PDA are very different (even if they can look the same superficially) and requires different techniques etc. The remark about presenting like a girl comes up too. The PDA society is brilliant: https://www.pdasociety.org.uk/

Thanks @Grimbelina - I have actually been wondering about PDA! He definitely has ADHD as the meds make a big difference to him in focus and control in school - but he is without a doubt demand avoidant and ODD never properly ‘fitted’ ( the presenting like a girl is very interesting).

Oh gosh thank you @Grimbelina - just reading that PDA link and that’s him! The apparent social skills, the bit about his use of language but lack of deep understanding, avoiding eating when hungry, complete drive for autonomy, even the way he works with routines. He is currently diagnosed OCD as well but the description of obsession often with people also fits him to a T.