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 have heard of it but often where the assessment has been carried out by someone less expert at identifying autism in girls, with a second assessment than having a different outcome. I’m sure it must happen tho. In fact, DD’s diagnosis was borderline as they used the ADOS, which is geared up to more ‘clear cut’ cases.

Have you heard of the Autistic Girls Network? They have a great white paper with 3 pages of bullet points about girls’ difficulties, many of which resonate with us. Maybe start keeping notes on things you observe in your daughter so you can build a case for assessment. It’s a tricky one as waiting lists are long (so good to get on there sooner rather than later) but hard to get a referral without having built up a bit of evidence. Lorna Wing are supposed to be good at assessing girls if near you and you’d consider a private option?

We had a full assessment that said no ASD... and a couple of years later had another assessment and my DC now has a diagnosis (which I knew would happen). In our case different teams assessed, both were apparently extremely skilled and experienced. You really do need to research who will assess as there can be quite a lot of nuance in presentation, especially for children who are almost borderline or who mask exceptionally well... and of course diagnosis of girls is still catching up.

Also remember that children can often cope in primary but fall apart in early secondary... and this can happen very quickly and dramatically. As some of the waiting lists are years long (even with some of the most skilled private psychiatrists etc.) delaying assessment can cause major problems when I child starts school refusing etc.

I would definitely be investigating no later than year 2/3 so any support, EHCP's etc. can be applied for before secondary. Meanwhile it is worth trying looking into how to parent a child with ASD and see if any of those techniques help. Different presentations require different skills however so what may work for someone with ASD won't help someone with ASD/PDA for instance. Start evidence gathering too which you will need to get the best out of any assessment.

I was told by my GP: Neurotypical people don't tend to wonder if they are autistic 😂

@Kta7 thank you for your advice. Good idea keeping a diary. Haven't considered a private option yet, but will look into it. Never heard of the Autistic Girls Network. Our suspicions have only started recently as we do know a few ASD girls with more typical traits and DD is quite different from them. But she does seem to have some unusual quirks and I wonder if we should go through the diagnosis so by the time she starts struggling (if she does), she'll have access to support.

As someone who assesses and diagnoses ASD I would say, yes, it does happen, however, we tend to have very thorough screening processes in place meaning that by the time it gets to assessment it is more likely that you will receive a diagnosis (in the NHS, anyway).

@Grimbelina thank you for your advice, very helpful.

I like this explainer from Prof Amanda Kirby - being diagnosed with ASD, or any other neurodiverse condition, is a question of whether you reach the threshold for diagnosis, based on the degree to which you are impaired by the condition.

Someone might show traits of a certain condition, but not to the degree that they would be diagnosed - however they might still have needs in that respect.

Thank you, that's helpful to know.

Thank you for your input, very helpful.

My son has health conditions and is under teams with liaison psychiatrist and psychologist. We ended up with literally the range of views on ASD/ADHD (we and school had not suspected either) - so none to both.

The psychologist who saw him for 6 sessions was adamant he had ASD but not ADHD and in told me not to bother paying for the combined test.

Because we’d had the range of opinions I did pay for the combined test. I was expecting ASD and possibly ADHD. He was only diagnosed with ADHD. He also has dyspraxia and SPD. I do think that fits more with his behaviour. ASD never sat quite right (we’ve never had issues with responding to name, eye contact, loves imaginary play, very empathetic and aware of other emotions). I think my son is complicated by the fact his presentation is subtle and he’s clever so can mask.

😶

I know children who haven't got an ASD diagnosis. There's often a quite detailed pre screening before you move on for the full ADOS and that is where people I know have been moved out. Some are told to wait and come back, some are sent on different pathways. Sometimes they get an ADHD diagnosis but not an ASD. Sometimes told there is a sensory processing disorder but not ASD.

I also know children who've been told no and then yes later. My youngest was rejected from the first prescreening and we were told to come back. The second time they were all "ooh yes definitely autistic". Not much had changed between the two appointments, just a bit of time passed so it wasn't a "stage".

@KingFisherSalmon Thank you for sharing your experience and I'm glad to hear you got some answers. You must be relieved.

Can I ask you what were his ADHD behaviours and how do you think he managed to mask for so long that even a specialist would not suspect it?

@Corinabloomer To clarify this was in response to me crying in front of her saying that I thought I was autistic but didn't want to waste anyone's time if I wasn't.

I had a weird experience with my kid. I strongly suspected ADHD, is all over the family and I know a lot about it. When presented the NHS wanted to put him forward for ASD assessment first (which was annoying as the process for this was long and couldn't start the ADHD process until it was done). He wasn't ASD but in the end was ADHD. So yes this was the case for us, but I think down to an error in judgement, I knew he wasn't ASD.

Thank you for sharing your experience, that's very helpful to know. Gives me a lot to think about.

@Corinabloomer at a similar age my DD was sort of fine with friendships and she's always been great at school in an academic sense. What you may find if she is autistic that the gap starts to widen as they get closer to the end of primary. It became very obvious in Y3 that the social side of thing wasn't great as the other kids started to outstrip her. And the sensory issues became more pronounced as she got older. She went from teachers thinking "oh she's just a bit sensitive" to obviously neurodivergent.

I totally understand. I do feel like DD is a little more immature than the girls in her class for instance. This wasn't obvious when she was at nursery but starting to show now.

I have long suspected that my dd is autistic, but I don’t think she would meet the threshold for diagnosis at the moment and is exceptionally good at masking. She is now in early secondary and although still clearly ‘different’, some of her behavioural and sensory issues have improved so I think perhaps she’s not quite autistic enough to get a formal diagnosis. I still parent her in the way she needs, which is quite different to what my other kid needs.

I just want to say that if you do suspect it, it's worth talking to school and seeing what they think because the waiting list for a diagnosis can be 2 years in some areas. And as she gets older, you're right in that there might be different challenges for her as she grows up.

My son missed the threshold for ASD (scored low on ADOS) but got diagnosed with very obvious ADHD. I think we'd possibly get a diagnosis is we assessed again now a few years later however I'm not pursuing it at the moment as he has a reasonable EHCP and support in place.

My DD was very similar to yours.

She had an assessment when she was 7 after school spotted some difficulties she was having, coupled with difficulties at home. We filled in all the questionnaires and were told that while she had lots of ASD traits there wasn’t enough for a diagnosis. She was quite immature so it was felt this would improve as she got older.

We then struggled on for a few more years with her mental health declining, every time I suggested that there was maybe something more going on, I kept being told she was fine, it was “just anxiety” and the classic “Mum seems anxious”.

Then when she was 15, she went bang and had a breakdown, self harmed, took an overdose and developed what we originally thought was an eating disorder and OCD. We were referred to CAMHS who were stunned she hadn’t been diagnosed before, they listened to what we had to say and referred her for an assessment and she was diagnosed.

I know it takes years. I'm just starting to gather info now. The school havent expressed any major concerns at the moment except for some hand flapping which happens sometimes but she snaps out of it very quickly when they call her name. In fact she just changed schools as we moved house and she adapted amazingly. She is confident with everyone and very chatty and engages in all activities and plays with the other kids.

Yes, my DS was put on the waiting list for an Asd assessment in 2018 aged 2.5 due to significant speech and language delay, other communication concerns and some other behaviours.

3 years later he was assessed and no diagnosis, which I believe is the correct decision. He had changed an enormous amount in those three years.

Sorry to hear that, it must have been heartbreaking! I'm glad you got a diagnosis and hopefully she'll get all the support she needs.

DD has some slight OCD behaviours (which we thought were delaying/avoiding tactics) but I do wonder if we need to give her some support. Plus the toilet habits are a nightmare and I don't quite see that with other kids. Seems to get worse as she gets older.