Autism without meltdowns?

[ListsWonderfulLists]

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.

I was part of a diagnostic team before I retired. As with allistic people, autistic people are as many and varied. Not all Autistic people have meltdowns.
My professional opinion would be keep pushing for a dx. You’re absolutely right, the amount of autistic children that cruise through primary and fall apart at High school is worryingly high.

Keep pushing and see a different GP if necessary. I’ve worked with many autistic children and they all present differently and many do not have meltdowns

I think of a meltdown as extreme emotion rather than lashing out etc, I have a 9 year old with ASD very worried how he will cope in secondary.

I’m autistic and never had meltdowns as a child other than uncontrolled crying. Some people have shutdowns rather than meltdowns. That’s more what I do now although I have meltdowns now too sometimes, since lockdown.

Definitely keep pushing. These misconceptions of autism do nobody any favours :( hope you can get somebody to listen!

Hi

My DS is very similar in terms of ADHD but having been described as having some ASD traits. I would keep pushing for a diagnosis if you think it will help.

I guess the bigger question is whether his needs are currently being met by the school? Is your concern that without an additional ASD diagnosis his needs won’t be met at secondary ( not dismissing this as despite what is often said sometimes you do need a diagnosis!). However it might also be worth concentrating on finding the best secondary you can for him and working with the school to ensure his needs are clearly articulated before moving to secondary. If the school has good SEN provision then even if you don’t get the formal diagnosis you’d hope his needs would be met under his ADHD diagnosis ( I completely appreciate that in many many cases this isn’t true btw! I know at my DS primary they don’t understand ADHD at all and even view it as requiring less support than ASD)

My child is autistic and doesn’t have aggressive/angry meltdowns at all. He’s very cuddly and gentle. You can still be very disabled and not fit the criteria for autism. I personally would argue he would be better served by a diagnosis that doesn’t carry the “meltdown” baggage than pushing for him to be squeezed in.

I have two sons with autism (non ID twins). One has meltdowns, the other never has.

The one who has meltdowns was diagnosed with ASD about 3 years before his brother.

Keep pushing. I eventually got a referral as school got involved and the diagnosis process started slowly but got there in the end.

I'm an adult on the waiting list for an ASD diagnosis... I don't have meltdowns in the stereotypical way - I can kind of feel the overload pressure gauge starting to rise and know to get myself out of the situation as soon as I can... and at home I tend to end up in a dark room with a weighted blanket on to rearrange inside my brain again.

My ds is 3 years and has a DX of ASD, he very very rarely has a meltdown but he does shutdown a lot. Usually his sensory needs go into overdrive and then he'll just shutdown to the world.

As someone who was only diagnosed with autism aged 40 I would urge you to keep pushing. Having that diagnosis at an earlier age would’ve helped me tremendously. I could’ve been your son from your description and would just shut down/ disappear into a fantasy world. I was a very quiet child and didn’t cause any problems so nobody really bothered looking at how I personally was affected.

Thank you so much for all sharing your experiences and @Gilead for your professional view. It's taken me a while to phone the GP as I kept doubting myself and then after speaking to him, I felt even more confused. I know of children who have symptoms that fit more obviously into the autistic "box" so you wonder if you're going insane. But you've helped reassure me that it's worth pursuing.

The GP has said to me to write to him listing as much as I can think of and to get a letter from the school as well so that's my next task and hopefully the referral will be accepted by consultant team.

My brother was diagnosed with ASD at 4 years old. (Privately, but was waiting on the NHS list). He's now in his teens. He's never had a "meltdown" as such. He's generally quite quiet and reserved and just gets on with being in his own world. "Meltdowns" are not part of the diagnostic criteria.

Really odd thing for a GP to say tbh.

I'm autistic and have never had a meltdown, I just withdraw.

My ds (16) got a diagnosis aged 10, he doesn't have a lot of the stereotypical ASD traits. He's fine with routine change and has never had a meltdown, but does lots of stimming and echolalia. It was only really in the last 2 years I have seen the gap between him and his peers widen massively.

Op, I agree keep pushing, consider other sensory needs.

Having meltdowns is a result of needs not being met, I pre empt many of my ds 9 needs so we don’t have meltdowns in a typical way, but he does need time to decompress which I understand, and has many other ASD traits (sensory around clothes, food, very black and white thinking, no edit on his communication)
We have referral without meltdowns or behaviour issues.... just explain why.
I’m also doing a dx cos of secondary school- need a dx to get the right school as he won’t cope with usual schools (too strict, doesn’t stop talking), I can’t see him being failed cos he doesn’t fit in!
Good luck- Gp shouldn’t be getting in the way of referral, school can also refer for you.

My autistic son didn't start having meltdowns until he became a teenager. Not all meltdowns look the same. In autism, becoming intensely irritated, anxious, angry and upset can be meltdowns.

Unfortunately, healthcare professionals understanding of autism is often inadequate and out of date. Autism research and autistic people speaking out and describing their experiences for themselves is changing the understanding and identification of autism all the time. Things are changing fast and clinicians can't keep up.

My Ds did not have meltdowns at primary school, secondary was a completely different matter. Although his meltdowns are always at home, not in the school environment. He finally got an autism diagnosis in year 11. Far too late and many of his difficulties now, are because he was not supported adequately when he was younger.

When I asked for an autism assessment in year 9, I was told by his school he was fine. The boy that I was told was fine in 2018, now needs an EHCP to meet his needs.

My ds1 was dx with ASD when he was 5. He is now 11, and has never had a meltdown. His behaviour both at home and school has always been brilliant. He is kind, loving, generous, forgiving and gentle. His main difficulties are with is extreme anxiety and, he is developmentally behind and struggles academically. I have often felt a bit of a fraud just like you. However, I am very glad that he has his dx as although it should not be the case, I think it has helped his needs to be recognised and met more easily, especially at school.

Ds is autistic and much more likely to shutdown than have a stereotypical meltdown (although we do get them too)

He can spend hours hiding under blankets and quilts and just can’t communicate at all

Understanding why he sometimes doesn't fit in with others and struggles with some things will help your DS self esteem. He won't think he is just weird but understand that sometimes his brain works differently, and that can be a good thing because the world needs people who are able to see things in different ways. He can look to the autistic community for advice on managing areas he has problems, and he can get support at school and university and later at work.

The shutdown thing which many of you mention is interesting. I hadn't heard of that before but we have noticed that DS goes off inside his own head a lot more when he's anxious. I think it's his safe space and way of coping - although it does mean he then often doesn't seem to hear or see anything else. His teacher commented on it when he first started Year 5 but it's improved since he's adjusted to a new class so I think it is related to anxiety.

Thank you everyone, it's really helpful.

Really sorry to hear about the struggles your boy has had @Punxsutawney . That's the sort of thing that worries me. I hope things improve for him now.

Really good point @DudeistPriest . He's got an amazing brain in so many ways and I don't want him to think negatively about himself. He's so creative within his sphere of interest and loves creating monsters/creatures in a programme. I realised the other day that he's created over 1800 creatures over the last 3 years, all utterly unique.

Someone recommended that I put my concerns under different headings when I was trying to get my DS assessed (he doesn't have meltdowns - he withdraws):
Behavioural
Emotional
Educational
Developmental
Physical
Social
Wellbeing

Your GP obviously has little awareness of autism. I'm not going to castigate him for that, because GPs can't be experts in every single field of medicine/psychiatry.

But having taught autistic children in special schools for most of my career, it is frustrating to hear of someone blocking a referral for the absence of meltdowns. My pupils were obviously severely autistic, but I'd say only 20% had meltdowns.

I'm glad the school is now able to support you with a report, so hopefully this time you'll get further.