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.)

I think to get to the point of a diagnosis there's usually something. My DS initially had a diagnosis of social communication disorder, which is basically the classic spiky autism profile but under the threshold for diagnosis. He was dx'd with ASD later on though once his language had caught up.

Hello there
I do hope you don't mind me asking on your thread OP but to those who have responded, may I ask:
Did receiving a diagnosis help your child and if so, how?
Thank you in advance
[Context: My child is under watch and wait at school and is managing. I do feel, as a parent and ex-teacher, there is something - but the school have only seen him meltdown a handful of times. I also know their budgets are hurting and only 4 in the school have EHCPs. How many of you with diagnoses of conditions have any of the following:
practical help (what? from whom?)
respite (laughs cynically)
financial help (see above)
extra support and adjustments in school (what? how consistent is it applied? has it made a difference?)
thank you so so much
psychologically, did it help you or your child (as in concerns were legit, it was not your parenting at fault it probably still is my parenting too you had a name for it) x

My dc has a speech disorder and was assessed but no asd so it's not a given

@flawsandceilings

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.

He sounds gorgeous. :)

My Ds was diagnosed ASD at 4. But the consultant said it was very borderline, and made the point that he might have traits that he then overcame.

Now 11 he has had the diagnosis confirmed and a whole bunch of other things added to the mix as well.

He's also gorgeous and has a stuffed cat (and a real live one) that he adores beyond anything.

My twins both have EHCPs and are at a specialist ASD school now - we had minimal support / input before that but social care have now decided we can have a few hours help a week in school holidays.

One child it turned out she was deaf and their was abuse and neglect at home. She went into foster care and learnt to sign.

One ended up ADHD diagnosed

Oh, another with speech delay/ glue ear and grew out of both with no additional input

"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."

Horrified and Alarmed face

@formerbabe Do you mind if I ask how it presented and how they developed as they grew older? Speech and language is the number one difficulty in my DC’s case, and it’s hard to tell how many of the other symptoms (eg difficulties with attention and knowing how to have appropriate social interaction) stem with that, so I wouldn’t be surprised to get a SLD diagnosis, but I haven’t been able to find much information about them online.

@SequinsandStiIettos For me, the main reason I’d like a diagnosis is for school. The SENCo seems to think it will help with an ECHP (I know it’s not a given), and I hope it will be a more straightforward way of explaining to teachers what their needs are in years to come (much easier than if they just present as difficult or distracted or whatever). They’re already having SLT, so it’s clearly not a necessity to have the diagnosis before being able to access that. I suppose we’re fairly lucky that, although they can be immature and we need to negotiate their quirks, at the moment they don’t display any of the more challenging behaviours that I know can accompany ASD.

In my family, myself and all my siblings have boys with additional needs. My eldest nephew was diagnosed with Aspergers age 10, now age 25. My son age 21 had never met him for more than a few minutes 2-3 times in his life but was diagnosed with ASD age 10. Both boys had shockingly similar developmental pathways and even had obsessions with the same very niche items, instruments and hobbies despite us barely even speaking to that part of the family at the time. Both incredibly gifted in maths but shockingly poor in social communication etc. My sisters boys are now 8 and 4 and have again followed the exact same path ways in terms of toilet training, speech delays as my son and our other nephew. Both her children were put on the ASD pathway but her oldest was told he has autistic traits but doesn't meet enough of the criteria at the moment. He does have mega sensory issues ( as does my son and nephew but less was known about that 10-15 years ago) but it's very difficult to get a diagnosis of that in this country. Her youngest is 4.5 yo and only just dry Day and night and only this month reliable poos in the toilet. His vocalist is very poor and other people struggle to understand his 2-3 word sentences. He has ASD traits too but the team believes he has a developmental delay.

But all the boys have had the same issues at almost the same time. My own son barely spoke until he was 4 . But they are all maths wizzes , very clever but struggle terribly with rules, sensory stuff and executive function.

I think the increase of knowledge about developmental delays, sensory processing etc is reducing the amount of kids diagnosed with ASD and instead focusing on the specific behaviour that are relevant under that umbrella. I think it's a good thing. My son would have benefited HUGELY from a proper sensory diet and help developing his executive function skills. He was failed terribly at high school, college and university.

DS had suspected ASD, then suspected ADHD. Now they suspect dyspraxia 🤷‍♀️ He’s certainly not entirely NT but he’s doing well in mainstream school...

I'll pm you @twinittowinit if that's ok as its long and might out me!

Is it possible to be “just” a S&L issue? What other traits does your DC have?

I don’t know, but I’d like to! As I understand it though it’s possible to have a diagnosis of Speech and Language Disorder rather than ASD.

My DC’s main symptom is difficulty with processing language - they really struggle with following directions, understanding questions etc. A lot of the typical ASD traits they exhibit seem to be linked to that - difficulty with conversation and appropriate social interaction (they’ve got what I secretly find a rather adorable habit of marching up to people in the street and asking them what their name is - which I think in their head is how you start all conversations - but I appreciate it’s rather startling for their chosen subject), difficulty following rules, still prone to tantrums you’d associate with a much younger child. But they do have other classic ASD traits too - they find it very difficult to transition out of a task they’re in the middle of, they struggle with sharing and turn taking, play can be a bit rigid, and school think they’re very distracted by noises others don’t notice (I’ve never picked up on that myself). Fine motor skills are also a disaster. On the other hand, eye contact is pretty normal, imagination is good, they love playing with other children, they don’t seem prone to meltdowns, not stressed by changes in routine, show empathy if another child is hurt / upset, etc. So it’s all a bit of a puzzle really!

@SequinsandStiIettos

We found we did access more support after diagnosis. Ehcp and dla are supposed to be needs led but we found the diagnosis came with a big document that evidenced all his areas of need and was key to getting the ehcp and dla. Which were key to going to his autism sen school.

We also got sent on autism specific parenting course. Which was useful and we met other parents which was like how other people find nct. We have a support whatsapp group.

It helped my son understand himself more.

It helped us be much more confident that we were good parents and were doing the right thing (especially after the course) as its so easy to take the stares and comments to heart.

Sequins, I have a “borderline” child that teachers were on the fence about that I pushed for an assessment for. He got a diagnosis of ASD. As he’s got older he’s somehow simultaneously become much more obviously autistic and actually much more able to cope and function.

I think his diagnosis possibly rules out a career in certain parts of the military (which he was never going to do anyway) but otherwise has had no downside. I wanted it partly for my own sanity (to know it wasn’t me or my parenting), partly for him to begin to understand he wasn’t “stupid”, “weird”, “crazy” and other adjectives he was using about himself and partly for being able to get additional help in school, claim reasonable adjustments for his disability etc. In all three ways it has been worth it.

I now just know he has autism - so I very rarely think about it anymore instead of constantly obsessing “is he, isn’t he”. I know how to parent him, I give myself permission to do/allow things I wouldn’t do with an NT child and I am generally much happier. Funnily enough the diagnosis was the point where autism became a much smaller part of my life.

For him it’s meant he is beginning to understand why he can’t tolerate certain things and why he finds some things very easy and others very hard. He has had access to play therapy and Lego therapy (through a charity) he wouldn’t otherwise get to help him with his emotions and managing his behaviour.

At school he doesn’t have an ehcp, but a diagnosis may make it easier if he needs one in future. It means his teachers understand his behaviour and he has special dispensations like a quiet lunch space. His school supported him incredibly well even without a diagnosis, but he’s not always going to be at that school and in the future it means if necessary he could potentially get a place at an autism specialist school or unit. It means I can get eg an airport to accept he cannot wait in a very crowded queue for security. It means he can join a social club for children with ASD and that I don’t feel like an imposter at ASD parenting classes.

I don’t need respite type help. But for us a diagnosis has been very positive.

@SequinsandStiIettos
My child was diagnosed when he was 3years and 4 months.
practical help (what? from whom?) mostly family (pre covid) but there is an amazing charity in our area that support families of children with ASD. They help signpost to other services, can help with DLA forms abs do amazing social events/ trampolining, soft play etc. Ds is under the learning disability team so we have had lots of training- parent and child, early bird and triple P. Also sleep advice and continence nurse.
respite (laughs cynically) yes we have recently been granted 2 hours a week direct payment for a PA.
financial help (see above) yes DLA And Carers allowance. This covers the private SALT we use. Also did floor time therapy privately when he was 2/3 years old.
extra support and adjustments in school (what? how consistent is it applied? has it made a difference?) EHCP finalised this May. Took a while and ds was getting 121 already but just means it’s legally binding.
thank you so so much brew cake

Sorry I’d cut and paste your questions- hope it makes sense!!

@Theotherrudolph That’s a lovely post that made me feel quite optimistic about the future. Thank you!

Hi OP I have one child diagnosed as on the spectrum and another going through diagnosis at present. I just wanted to mention that children with autism all present very differently so for example having good imaginative play or good eye contact does not mean they are not autistic. My eldest has good imaginative play but poor eye contact and hates social occasions. My younger son loves social occasions but has issues with aggression and toileting. It's different for each child.

We were sent away from our first pre-assessment and told to come back. So in our area a paeditrician does a mini assessment first and if they think there is enough there you get referred on for the full ADOS. My dc was 4 and the doctor decided there wasn't enough evidence yet so sent us off for SALT intervention to see what that did.

Second time, armed with a very comprehensive report from the speech & language therapist, he did get the diagnosis. I get the feeling from other people that, at least in our area, it's not uncommon to be sent off initially. Especially for younger children.

I’m an Ed Psych, and reading your post, I’d say a lot of your sons behaviours could be explained by a language issue.

• not following instructions, perhaps they genuinely don’t understand what they’re being asked to do or it’s taking longer to process. Have you tried using a visual alongside eg getting dressed you can get a visual of the steps.
• having trantrums - soooo common if a child is frustrated because they can’t communicate.
• going up to people and having a bit of a script - common for children with language difficulties to have a script for interactions or talk about topics that are familiar to them as they are safe topics. If child asks what their name is, 99% of the time the answer will be a name and ‘what’s yours?’ which presumably the child can answer. Again rigid play can be about staying in the ‘safe’ zone that the child understands.

Could be worth looking at auditory processing disorder - it’s worse when it’s noisy which could make sense if school are saying he seems aware of noise.

Could be ASD, of course, but I have worked with children with similar behaviours and it’s been a language disorder, hearing issues etc

One of my DSs has and ASD diagnosis, the other has a dyspraxia diagnosis. The one with dyspraxia was also referred for ASD assessment but they said his traits were down to his existing diagnosis.

“I just wanted to mention that children with autism all present very differently so for example having good imaginative play or good eye contact does not mean they are not autistic.“

You’ve also got to be aware that you sometimes see things differently...for various reasons.

It wasn’t until we were well into the assessment process for instance that it clicked for me that reenacting things exactly isn’t really imaginative play.

I didn’t see an issue with his eye contact, I said he had good eye contact - the dr stopped and looked at me and went, yes with you... not with other people, lol.

Then there was the whole discussion about literal language and idioms, we were talking about how he’d specifically learned some common phrases and she asked how he was generally though, if I said something like go jump in the car... and I suddenly realised I don’t say anything like that, but have never worked out if I’ve never said them or if I’ve learned not to say them because he takes things literally... I still don’t know, he’s 24 now, rofl.

So sometimes things like that aren’t cut and dried

@SkeletonSkins That’s really helpful, thank you. Do you mind if I ask what the prognosis on language disorders normally is? Does it tend to improve with age / treatment?

@tabulahrasa That’s really interesting! You’ s made me stop to consider how imaginative their imaginative play really is - there is definitely an element of acting out TV shows etc. Then again, they’re very fond of pretending to be a dog and having their big sister take them for walks, and as we don’t have a dog, I figure that’s pretty original! Also the egg and potato sandwich they like to make in their toy kitchen, that’s definitely not a reenactment of anything I’ve ever done . I’m not sure they’d literally ‘jump in the car’ if I told them to, but then again, because of the language issue, I think the nuance of jump / get in would be lost of them - they’d hear ‘car’ and rush out of the door without pausing to think too hard about the rest!