Autism without meltdowns?

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I posted this in SEN-children but got no responses so posting here for traffic.

My 9 year old DS was diagnosed with ADHD and dyspraxia a couple of years ago. At that time he fell just under the threshold for further investigation for autism and the dr wrote that he had some autistic traits.

Over the last year I've thought more and more that he probably is on the autistic spectrum. He's started stimming a lot when he's excited (tapping his chest rapidly). He has very intense interests and he lives in his own world a lot of the time, the gap between him and his peers seems to be widening in terms of social skills.

But I spoke to the GP today to see if we could get referred back to the paediatrician who diagnosed him before and the GP was very nice but seemed unsure whether the referral would be accepted as we don't actually have any "problems" at the moment. He's never had what you'd consider a typical meltdown. When he's anxious he cries quite a lot and has occasionally struggled to stop. That seems to be his reaction so he never lashes out, if he's upset or worried or angry he just cries, bless him. But cuddles sort that out. There's no problems at home or at school with behaviour. He forgets instructions quite a bit but that's his ADHD and dyspraxia.

In general he's quite an easy child to parent so I feel like a bit of a fraud? But when I see him out with other children his age I really do see the difference. He's quirky as hell so he'll just start crawling around like a creature quite a lot and he often comes out with stuff like, "I'd really like my own stasis chamber!" Many of the children at his school think he's weird and he'll say himself that he's weird but that he likes being weird! But I am terrified about secondary school and what's going to happen there. I'm a teacher and have seen quite a few children fall apart when they get to secondary and/or hit puberty.

His school agree with me so I'm sure they will help in writing to the dr but I wanted to ask if anyone else had a child like him and if they got a diagnosis.

Wow Im finding this thread really helpful. Thankyou. I am pretty sure I'm autistic (daughter is) but for a long time felt I didnt "match" the stereotype. I dont meltdown but I do regularly shutdown or disengage with life to my detriment....

Reading some of these comments made me worry a bit. My dc doesn't have diagnosis, but referred to paed at 2 year check up and it was inconclusive. He is very quirky and different to his peers but happy and well behaved at school despite social awkwardness. He does have meltdowns at home but not a violent ones, more like break down and shut down, never at school.
We never really tried to get him seen again since he has no trouble at school and none of the teachers mentioned concern.
But now he is in secondary, I will keep an eye to make sure he isn't suffering silently.

With regards to school for a lot of children the coke bottle effect comes into play. So throughout the day things will happen but they keep the lid on the bottle but it gets shaken a bit, then at the end of the day when they are home and in a safe environment that lid comes off and because it has been shaken all day everything explodes

I have ASD, do not have 'meltdowns' and never have. Any rage/frustration has always been hyper-controlled by me. Much more likely to cry copiously. I was quiet and well behaved as a child (plus they didn't believe autism existed for girls then) so I got no help or understanding because it only impacted me.

Bobbin what promted you to get diagnosed. How did you find it?

@TryingNotToPanicOverCovid I retrained as a teacher and started to recognise my own traits in the autistic children. Talked to some of the allied professionals that came in to school about it and went to the doc. It was a pain in the arse to do and I'm not sure if bother again, because my issues are largely social; I don't teach any more but I am in a job which sees many of my 'traits' as assets. Also I work almost entirely with men so they don't notice my awkwardness as much (sweeping generalisation there but it's my 'anecdata')

Sirzy that’s so true. Both my two were like that at school, especially DD1 who would unleash all her fury on me and teachers just would not believe she had difficulties. She had almost 5 years home ed after that (DS still is) and even now she’s gone back to secondary she’s still a bit like that, but has shutdowns, not meltdowns. It’s like she’s paralysed sometimes.

I’m a bit like the coke bottle too tbh and it’s far far worse since covid. Even talking to me sometimes is like somebody knocking into the coke bottle and it just builds up and up through the day until I end up hurting myself.

GP’s can be stupid and condescending at times.

Briefly, dd2 dx with ASD aged 11. Dd1 went through assessment at 16 - was told (exact words) “we can’t give dd dx of ASD as she likes music and goes to college. However I have no doubt if she’d been through the system aged 6/7 she’d have been given a dx of ASD” .... Wtaf?!

Roll forward a few years, asked GP for re-referral for assessment (due to new challenges) - no, your dd can’t have ASD as she doesn’t have a learning difficulty, therefore can’t have ASD. EVEN THOUGH dd2 doesn’t have a learning difficulty but does have ASD dx. This was our family GP who knows us all!

Mad. Keep pushing for your ds.

The learning difficulty thing is bollocks as well. I have a master's degree and a PhD. Across the board at school my academic reports were glowing. I'm not dyslexic, not discalculic and I don't have processing speed issues. I just can't deal with people and I wasn't good at PE/music/dancing.

Many don't have meltdowns including my son for a referral for diagnosis.

In fact he never had a tantrum either!

But just be careful how you describe the behaviour. My ds would also get very very upset and son over things and would also hit himself and pull his hair etc.

He did have meltdowns as he got older and couldn't cope anymore but he's been diagnosed a few years when these started.

Before that he lived in his own little bubble and a bomb could've gone off beside him and he wouldn't have noticed

If that was for me bobbin - I know .. it’s a pity GP’s don’t...

Hi op, my DD 12 was dx add when 10. She rarely meltdowns now, used to when younger, but it was more unable to communicate her needs. She often shutdowns, these shutdowns can last a whole day, she goes non verbal during the shutdown and does not have any recall afterwards. So getting her to understand and self regulate is very difficult. I would definitely press on with dx, it didn't help in primary school for my DD, but her secondary school are great.

@Frazzledbutcalm I was agreeing with you

bobbin - I thought so ... why don't some TRAINED professionals understand it?? Madness!

I’m so tired of fighting for my children (now adult
& almost adult) - we just shouldn’t have to. Other disabilities and illnesses don’t have to fight for their rights ...

The crying is a meltdown. Not all autistic children shout and throw things. My own dd's meltdowns involve an hour or so of crying under a blanket. Try a different GP op.

@ListsWonderfulLists Can your School not refer? On the basis that it needs to be addressed before transition?

[quote crapbuttrue]@ListsWonderfulLists Can your School not refer? On the basis that it needs to be addressed before transition?[/quote]
Yes we could probably go down that route but the SENCO suggested going via the GP and the paediatrician who saw him before if possible, as we have history with them. We went the GP route a couple of years ago with the dyspraxia because the initial problem I noticed was his issues with coordination so we escaped CAMHS! If they don't accept his referral then I guess we will look at that instead though with the school. They are very supportive thank goodnees.

My 6 year old was diagnosed at 2.5 (it was obvious from around 14 months old he had Autism). He is non verbal and still in nappies but has honestly never had a meltdown in his life, even when told no. He’s very good natured and he’s never violent to anyone, and doesn’t hurt himself either.
For me personally “meltdowns” aren’t a symptom of my son’s autism.

My DS (now 23) has Asperger's Syndrome and never had one meltdown.
In fact, he was a lot easier behaviourally than my 2 young Neuro-Typical DCs.

He had other textbook traits such as obsessive hobbies, finding social interaction difficult, little eye contact, eccentric body movements.
Now at the age of 23, his eye contact is good as are his social skills because he's worked really hard at learning them, almost like a Neuro-Typical would learn a foreign language.
I think he's amazing 🙂

Hi

It's worth looking at the dsm V diagnostic criteria for ASD. No mention of meltdowns there! I don't know why GPs don't use this. I know they aren't meant to be experts but it's quite easy to access the info.

www.autismspeaks.org/autism-diagnosis-criteria-dsm-5

I for one won’t be clicking on an Autism Speaks site 😬

@IhateBoswell

I for one won’t be clicking on an Autism Speaks site 😬

I've just googled Autism Speaks. I didn't know. Apologies.

Apologies if my post came across as unnecessarily snarky, izzy2076.

DS2 was diagnosed at 11 and very rarely loses his temper about anything, no tantrums as a toddler and hardly cried at all as a baby.
He just gets very tired when he's overwhelmed.
His brother with ADHD had epic tantrums that were very hard to handle.

@IhateBoswell

Apologies if my post came across as unnecessarily snarky, izzy2076.

Not at all! I'm grateful for the heads up!