Does ‘suspected ASD’ ever end up not being ASD?

[TwinItToWinIt]

My 4 yo DC is currently in the process of being assessed for ASD. There’s definitely a speech and language issue there, and some other classic traits too, although in other ways they present as fairly NT (sociable, no major sensory issues, imaginative play etc), so I suspect it’s not going to be a straightforward diagnosis.

I’m just curious really if anyone has had a child with ‘suspected ASD’ who has then NOT had it? And if so, did it just turn out to be a development issue that they eventually ‘grew out of’, were they diagnosed with something else, or did they grow up as someone with ASD traits but without a diagnosis of autism?

(I should add - this isn’t a ‘clutching at straws’ thing. I love my DC in all their quirkiness, and although I strongly suspect they’re autistic, I sometimes wonder how things will then pan out if it turns out they’re not.)

DS's traits began to add up to an ASD picture when he was 7. He was diagnosed just before 9 and I was surprised at how adament the consultant was. He's very much what would have been described as an Aspergers level and masks very well in school and I was concerned that he masks too well to have been picked up.

His cousin was described as "borderline" and that description was also applied to an adult friend. Both have diagnoses of ADHD.

Not me personally, but I know a couple of people whose DC didn't meet the criteria for diagnosis. One was a bit older IIRC, the other one was nearly 5 and diagnosed with ADHD and dyspraxia, and I know his mum thinks another diagnosis might come out as autism.

Was going to add the same.

Sometimes they end up being diagnosed with adhd or dyspraxia.

Sometimes it's purely speech delay or language delay or speech and language disorder.

Sometimes children are diagnosed with something else, sometimes it turns out there is a specific reason (eg hearing etc) and on occasions it turns out to be situational (eg their upbringing).

And sometimes it's just not quite pronounced enough to be diagnostic, too.

I know the 'we're all on the spectrum' line annoys people (and rightly so), but I think it definitely is possible to have quite a lot of autistic traits without quite fitting the definition, because diagnosis isn't an exact science.

@SarahAndQuack

And sometimes it's just not quite pronounced enough to be diagnostic, too.

I know the 'we're all on the spectrum' line annoys people (and rightly so), but I think it definitely is possible to have quite a lot of autistic traits without quite fitting the definition, because diagnosis isn't an exact science.

Yes, I think about this a lot, and how it’s not as if there’s some sort of blood test or MRI scan or whatever that can give anyone a definitive answer. Clearly, some people are very obviously autistic and some are very obviously not, but there does seem to be a middle area where ultimately a diagnosis is a judgement call.

Thanks for the replies, everyone - so interesting to hear how it has turned out for other people!

DS. He was non verbal, didn't respond to voices, obsessed with a few cuddly toys, sucked thumb constantly.

Turned out he had terrible glue ear. Got grommets in both age 3.5. We bought a thumb guard to stop him sucking his thumb and within 6 months he was talking. Speech and language therapist laughed at the difference in a year.
Turns out he was shy, deaf, loved sucking his thumb, had an older sister who brought him everything he needed and really LOVED his stuffed rabbit.
Now he's 10 , never shuts up, quietly popular. Still loves rabbit.

Yes! My DS was investigated for ASD but diagnosed with Dyspraxia, ADHD and a specific learning disability. He is year 11 now.

My son was referred to the SENCo. Teacher suspected ASD. We had no concerns. Nothing came of it.

Thanks OP. I could have written your OP word for word and have debated doing so over recent months!!
DM me if you would like to chat with someone in the same boat (or same storm, different boat, whatever analogy you prefer 😄) as I know I would certainly love a chat with someone on the same road!

massive misdiagnosis, even inaccurate EHCPs

ADHD, SEMH and even dyslexia

Also a lot of ASD diagnosed as the above.

I think it’s not impossible but not that common to come away with no diagnosis at all. I think it’s more common to get a different diagnosis, e.g. adhd, or to uncover an underlying issue such as hearing. The bottom line is that your child is showing some signs that they might not fit the cookie cutter mould that many of his peers do.

That said, whatever the formal diagnosis, your child is still the same person. Any diagnostic process is just about evaluating your child’s own individual needs and how they can be supported to be the best version of themselves.

I do get it though, I once upon a time had a 4yo who was referred to assessment, with me being quite sure we were just ‘ruling it out’. Turns out he’s pretty bloody autistic, even though in many ways he presents as a perfectly NT child. He’s very good at masking at school, and very sociable and well liked by his peers. Over time he has become much more challenging at home and it’s very helpful to us to know why he is like he is. It’s not wilful disobedience, he just finds some things more difficult than other children.

A friend's child was assessed when she was 4. Turns out she needed hearing aids. Slightly later in primary school she was diagnosed with dyslexia. She's now a teenager, wears hearing aids and needs some support with things like organisation, but I don't think anyone would suspect autism now.

If most were diagnosed as a result of suspicions it would make me concerned regarding the rigour of the process.

@namochangoro

If most were diagnosed as a result of suspicions it would make me concerned regarding the rigour of the process.

I’m not sure that’s necessarily true, if by suspicion we mean observation of a number known ASD traits. Obviously other conditions can mimic those traits (hearing problems being a case in point, as some PPs have mentioned, although in my DC’s particular case that’s been ruled out). But I guess I’m wondering how common it is for a child with suspected ASD to end up without a diagnosis of something - it’s looking like, not very.

Wouldn’t rule out ADHD or dyspraxia rather than ASD in my DC’s case to be fair, and paediatrician did raise the possibility of a language disorder, too.

@Flamingolingo

I think it’s not impossible but not that common to come away with no diagnosis at all. I think it’s more common to get a different diagnosis, e.g. adhd, or to uncover an underlying issue such as hearing. The bottom line is that your child is showing some signs that they might not fit the cookie cutter mould that many of his peers do.

That said, whatever the formal diagnosis, your child is still the same person. Any diagnostic process is just about evaluating your child’s own individual needs and how they can be supported to be the best version of themselves.

I do get it though, I once upon a time had a 4yo who was referred to assessment, with me being quite sure we were just ‘ruling it out’. Turns out he’s pretty bloody autistic, even though in many ways he presents as a perfectly NT child. He’s very good at masking at school, and very sociable and well liked by his peers. Over time he has become much more challenging at home and it’s very helpful to us to know why he is like he is. It’s not wilful disobedience, he just finds some things more difficult than other children.

Yes, it’s a fair point that a formal diagnosis doesn’t actually change who the child is. Sometimes I feel like I don’t really mind one way or the other what it turns out to ‘be’, and at other times I think how useful it would be to know (not least to explain some of their quirkier behaviours to other people!)

I do know two children who don’t meet the diagnostic criteria for ASD however in both cases I personally think they have it. I am not an diagnostic expert though just a parent of a child with ASD and another with Dyspraxia/Dyslexia and an academic with a lot of experience of teaching students with HFA by virtue of where I lecture and the subject area I lecture in. I think the most telling feature for picking up ASD is social difficulties. Difficulty reading people. Difficulty interpreting or understanding the emotions of others or sometimes the other extreme way too in tune with the emotions of others that it causes emotional shut down. If you say your son doesn’t have those issues then I would absolutely look through other possible causes which as you identify there are a lot.

In the two non diagnosed children the issues that flagged the assessment cause them significant difficulties/challenges and very much relate to social difficulties among other sensory issues - but because they don’t meet the diagnostic criteria in other areas they don’t get the diagnosis. So that can happen too.

In my experience at my level of education I find that autism is actually under diagnosed as there would have been quite a few students over the years that a number of my colleagues would have flagged who have not been diagnosed.

I’m not sure that’s necessarily true, if by suspicion we mean observation of a number known ASD traits.

But diagnoses require much more rigour than a lay person's observation of symptoms. If this wasn't the case there would be no point in an official process. That's what I mean, really. Otherwise we would be diagnosing all sorts of conditions on anybody's say so.

My job involves assessing children for ASD. There are absolutely cases where the diagnosis is not given, but that doesn't mean the observed symptoms go away. Sometimes a different diagnosis explains the symptoms better, sometimes the symptoms aren't universal enough to be ASD.

This is the diagnostic criteria. The important bit is where it says "not otherwise explained" which is why for example language disorder or learning disability should be explored first.

My twins were both diagnosed at 2, in both cases they wanted to rule out other causes for their symptoms first such as fragile X syndrome, hearing issues, brain damage for DT2 which he does actually have but they think is unrelated.

Now a urine test run by his geneticist is borderline indicating MPS, a group of metabolic illnesses which are usually life limiting and some of which are often misdiagnosed as autism.

I think it’s unlikely to come through this without some form of diagnosis, but whether it’s autism, a rare condition or glue ear it’s hard to know going in.

My DS did get a diagnosis of an ASD... but, they took a very long time to do it to rule out other things first.

He has a speech and language issue not typical of an ASD, so they wanted to make sure it wasn’t just that causing some of the other difficulties.

So he wasn’t diagnosed with anything at all until he was 13, he’d been seeing an SLT since he was 2 and first assessed for an ASD at 7.

It did end up being a bit of a judgement call really, but he was in secondary school and really struggling - and it was almost impossible to access the right support without a diagnosis of anything.

In theory though, if the other difficulties had resolved themselves with SLT he’d have ended up not having the ASD diagnosis.

My DD was suspected to have ASD. We had her assessed and she was diagnosed dyslexic and the psychologist explained dyslexic children present as ASD as they are developing different ways to learn and communicate. She had dyslexic intervention at school and I never thought she would achieve much academically but she is now in year 9 and either meeting expectation or exceeding. I am so proud of her.

My child had ASD traits but no diagnosis. Even the teachers agree he has traits but choose to call him quirky instead. He’s pretty bright and sociable and to me is just a gorgeous geek.

I don’t think he’ll ever get a diagnosis, even if I pushed to get him back in from of a paediatrician. I’ve been told by all sorts of people he needs to be two years behind whereas in some subjects he’s actually ahead.

So try not to worry. I jumped through all the necessary hoops and my child is thriving regardless.

My DS is 5 and had his ADOS a few months ago. He was first referred when he was 2, has seen various SLT and other clinicians, who were 50:50, but when shown video of the flapping, jumping etc felt ADOS was appropriate.

He scored 3 (so not meeting any cut off for ASD). He is doing well at school, at expected level for everything, plenty of friends. But...there is still something, and at the same time they gave me the ADOS results, they said they will send someone to observe him in school when the pandemic allows. Basically in some cases it just isn't clear cut.