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If autism is obvious at 2, is it severe?

40 replies

Goodwitchglenda · 12/07/2024 16:14

Hello
We are looking at an autism diagnosis for my child, who is 2. Says few words, no pointing or much waving, lots of running up and down and flapping, pushes other kids away. We are on the waiting list and have been told we will get a diagnosis probably. We are very worried, my mother less so (I have two autistic siblings, one very severe, so her benchmark is quite extreme).

Amidst the “red flags” there are lots of promising signs of progress - eye contact, good understanding, games, sense of humour, desire to engage with us (cuddles, books, songs and play), learning hand gestures to songs, no real sensory or routine issues to speak of, protests but not massive meltdowns. Lots of babbling and a few words breaking through. Child was also premature so milestones have been a bit off, but smiled on time and has always responded to faces. Was so social as a baby that we didn’t think there was anything to worry about.

I suppose what I’m asking is, in your experience, does autism that is obvious early on always mean severe autism? Or could my child still learn to talk and even live independently?

I want to manage my expectations, but I also don’t want to live without hope. I know some autistic people didn’t talk until quite late.

Thanks

OP posts:
Dollmeup · 13/07/2024 15:49

I had no idea my daughter was autistic until she was 3 and her nursery said they wanted to refer her for assessment. She had a few words at 2 but it was generally naming objects and at 3 she was using echolalia and scripts to communicate. It was during COVID orid probably have noticed more differences between her and other kids. She didn't point or follow pointing but did make eye contact with us and smiled so I never really considered ASD. I just thought she was a really difficult toddler.

Her autism was actually more obvious once her speech progressed I think. She is very bright but has a lot of social and emotional delays. I'm hoping one day she will be independent with minimal support but she's only 7 so who knows.

Ellie56 · 13/07/2024 20:50

When our son with autism was 3, he had virtually no language, no social skills, the concentration span of a gnat, exhibited bizarre behaviour and regularly had meltdowns.

When he went to school at 5, he still had poor language skills, no social skills and had no idea how to behave. He regularly lay down in assembly, refused to co operate in class and used to hit the staff and other children, and growl aggressively.

He was not diagnosed with autism until he was nearly 8. By this time the hitting and lying down in assembly had stopped, and he was conforming more at school, but we noticed his behaviour at home was much worse. It was as though he was only just managing to hold it together for the time he was at school and then all hell let loose when he got home - meltdowns, throwing things, climbing out of windows, threatening us with knives etc. and at times I really feared for the future.

I now realise a lot of this was down to his school not giving him the right provision and the right level of support . The gap between him and his peers was widening all the time and he was really struggling. At the end of year 2 he had been functioning at age appropriate levels but by year 6 he was well behind the others in his class as lessons became harder and more abstract.

Despite this, by the time he was 11, our son bore no resemblance to the little boy he had been when he first started school, although he still struggled with language, was emotionally immature and still needed a lot of support at school.

He went to a fabulous secondary school where they put in virtually 1:1 support all the time and he settled really well in a very short space of time. They also put him in small groups for English and maths and worked on his social skills. Although he still found things difficult at school he made progress and all the behaviour problems we had up to then stopped. I believe this was because he was given the right support at school, by people who understood autism, and were experienced in this field.

He has continued to improve all the time. He has developed a sense of humour and is very caring. When he was 16 I couldn't envisage him ever living away from us or doing anything on his own. I thought then that eventually, we would end up later in life, a doddery old couple with a 40 year old man trailing round after us wherever we went. The idea of our son even catching a bus by himself was unthinkable.

Four years later, after training , he was able catch the bus back home from college. He is now 29 and regularly goes out on his own in the local area which he is familiar with, and often catches a bus into town or some other local place. He can use a mobile phone and always takes it with him and keeps it switched on, so we can keep in contact with him. At first he had a cheap phone that he could just take calls and text on. Then he learned you could do loads of other things on phones and he asked for a smartphone of his own, so he could do all those things too.

As the years have gone by, we have met many challenges, but our son has continued to develop in his own pace. Mainstream FE was a disaster as the staff had no clue about autism and just expected him to fit in with everyone else. Not surprisingly the placement fell down and our son was diagnosed with an anxiety disorder after nearly having a nervous breakdown.

When he was 21 he went to a specialist residential college for students with autism, 160 miles away from home, where the staff were absolutely fabulous. He spent 3 years there and achieved far more than I ever thought possible.
He learnt independent living skills, improved his communication skills, did work experience dealing with the public at several tourist attractions, and acquired GCSE and NVQ level 3 qualifications.

He learnt to cook, to do his washing and ironing, and to manage money. He learnt to travel independently and regularly travelled home on the train from Somerset to Staffordshire by himself, which involved changing trains. His confidence improved and his self assurance became more and more apparent as time went on. He now has a part time job and is living in his own place (with some support) when I once thought he'd be living with us for ever.

BrumToTheRescue · 14/07/2024 10:27

Such a fabulous post, @Ellie56. Lovely to hear DS is doing amazing.

GapingGill · 14/07/2024 17:23

I think if you know what you are looking for, which you do, you will probably notice earlier. Families where the first child is autistic often say that they didn’t realise how different they were as infants and toddlers until they had a subsequent neurotypical child.

I have a child who I noticed was a bit different before he turned 1. I considered and dismissed autism because of one aspect of his behaviour when he was maybe 2-3yrs. I assumed he couldn’t be autistic because he did something, and did it well, that the stereotypical autistic child is supposed to be bad at. He got a diagnosis at 4.

At 11 he can sometimes pass for neurotypical, is intelligent, but is in specialist provision because of his autism. I think many people would classify his autism as mild, yet it has a very profound effect on him. At 11 I still have no clear picture of what his adulthood will be like and I find this very hard.

sleepworkmum · 15/07/2024 10:41

GapingGill · 14/07/2024 17:23

I think if you know what you are looking for, which you do, you will probably notice earlier. Families where the first child is autistic often say that they didn’t realise how different they were as infants and toddlers until they had a subsequent neurotypical child.

I have a child who I noticed was a bit different before he turned 1. I considered and dismissed autism because of one aspect of his behaviour when he was maybe 2-3yrs. I assumed he couldn’t be autistic because he did something, and did it well, that the stereotypical autistic child is supposed to be bad at. He got a diagnosis at 4.

At 11 he can sometimes pass for neurotypical, is intelligent, but is in specialist provision because of his autism. I think many people would classify his autism as mild, yet it has a very profound effect on him. At 11 I still have no clear picture of what his adulthood will be like and I find this very hard.

"At 11 I still have no clear picture of what his adulthood will be like and I find this very hard."

I can relate so much to this!

Flop2023 · 15/07/2024 19:50

Hi OP, I was exactly where you were just under a year ago (and to some extent am still here). Our DC sound alike. Last summer I began to realise my then 2.5 year old, whilst verbal, was very repetitive in his speech and wasn't able to ask and answer questions in the same way that his older brother had at that age. Googling quickly led me to echolalia of course. But he had always been engaged in family life, relatively placid, and affectionate, so I waited - and had some trouble convincing my husband of my concerns anyway.

He turned moved into the 3+ room at nursery, where they immediately clocked a whole raft of issues that had flown under the radar in the toddler room - repetitive behaviour, inability to complete multi-step instructions, short attention span, and indifference to the other children. Nursery were fab and never said 'autistic', saying they were not qualified to diagnose (true), but we all know that's what it is. Husband, to his credit, did a total 180 and is fully on board.

Like you I have taken comfort from DC's positive relationships with us, his brother, his grandparents and some of his keyworkers - important 'building blocks' to socialisation. His autism is now blindingly obvious to those of us in the know - at home we see classic flapping and jumping. We can however still access our community without too many challenges. He's just cracked riding his balance bike and responds to 'stop' and 'wait'. His speech has developed, he talks a lot and some of it is functional, lots of echolalia still, he is not conversational and still can't answer questions. He sleeps better, but eating is more rigid. He now has more obvious routines and rituals which do cause meltdowns if not followed - things like crossing the road in certain places or touching a particular tree - but they are easy to accomodate for now. He is nearly 4 but is more like a young 2. Strangers (and even some family members we do not care to share such personal info with) mostly do not clock his differences but, to use a PP's phrase, it's clear to us he is profoundly affected by his autism and I suspect the gap will widen between him and other children in time.

Like you I find looking ahead to his future scary. Our current challenge is toilet training, which isn't going brilliantly, and looking ahead to reception in 2025. He has taught me so much, is an absolute delight, and is more straightforward in many ways than my fiery (but awesome) NT 6yo.

I've been on a huge learning journey the past 9 months and I just hope I can always do what is best for him. Feel free to PM if you ever wish x

Scratchybaby · 16/07/2024 09:59

Flop2023 · 15/07/2024 19:50

Hi OP, I was exactly where you were just under a year ago (and to some extent am still here). Our DC sound alike. Last summer I began to realise my then 2.5 year old, whilst verbal, was very repetitive in his speech and wasn't able to ask and answer questions in the same way that his older brother had at that age. Googling quickly led me to echolalia of course. But he had always been engaged in family life, relatively placid, and affectionate, so I waited - and had some trouble convincing my husband of my concerns anyway.

He turned moved into the 3+ room at nursery, where they immediately clocked a whole raft of issues that had flown under the radar in the toddler room - repetitive behaviour, inability to complete multi-step instructions, short attention span, and indifference to the other children. Nursery were fab and never said 'autistic', saying they were not qualified to diagnose (true), but we all know that's what it is. Husband, to his credit, did a total 180 and is fully on board.

Like you I have taken comfort from DC's positive relationships with us, his brother, his grandparents and some of his keyworkers - important 'building blocks' to socialisation. His autism is now blindingly obvious to those of us in the know - at home we see classic flapping and jumping. We can however still access our community without too many challenges. He's just cracked riding his balance bike and responds to 'stop' and 'wait'. His speech has developed, he talks a lot and some of it is functional, lots of echolalia still, he is not conversational and still can't answer questions. He sleeps better, but eating is more rigid. He now has more obvious routines and rituals which do cause meltdowns if not followed - things like crossing the road in certain places or touching a particular tree - but they are easy to accomodate for now. He is nearly 4 but is more like a young 2. Strangers (and even some family members we do not care to share such personal info with) mostly do not clock his differences but, to use a PP's phrase, it's clear to us he is profoundly affected by his autism and I suspect the gap will widen between him and other children in time.

Like you I find looking ahead to his future scary. Our current challenge is toilet training, which isn't going brilliantly, and looking ahead to reception in 2025. He has taught me so much, is an absolute delight, and is more straightforward in many ways than my fiery (but awesome) NT 6yo.

I've been on a huge learning journey the past 9 months and I just hope I can always do what is best for him. Feel free to PM if you ever wish x

@Flop2023 we had - still have - that same issue of needing to cross the road at specific places, or not being able to cross the road at all in some places! It is so frustrating trying to find workarounds to get to places you need to get to (i.e. how the hell do I get him to the eye doctor across the road without having to leave an hour early and take a round trip bus journey just to get to the other side of the road?? 😅)

It does seem to come with a very developed sense of direction and geography though, even from a really young age. Before DS was three I took him for a walk and let him decide the directions we took at each junction of the road and he led us all the way to the biscuit aisle of the shop a half mile away from our house 😂the rigid routines are clearly developed through strong motivation and determination!

Worriedmotheroftwo · 25/07/2024 22:50

My son is autistic. It was obvious to me well before he was 1, though everyone dismissed me. He finally got his diagnosis at 5 (this year).

He is a delight. He is in a mainstream school, is working at expected levels in everything (except social emotional stuff) and is brilliant at maths. He has friends and hobbies. He has just finished Reception and loves school.

So honestly, you just can't tell. Best of luck to you and your child.

Bubblebather89 · 03/01/2026 09:20

How is your child now OP?

Goodwitchglenda · 03/01/2026 14:56

Bubblebather89 · 03/01/2026 09:20

How is your child now OP?

Hello,
He is autistic - his diagnosis at 3 was no surprise to me. He is now nearly 4 and doesn’t really talk still, perhaps never will. We get the occasional word. I taught him to point. Still not toilet trained but he will get there. We are on our way to an EHCP and a mainstream school with autism provision.

He is the most wonderful, loving, cuddly little boy and I would not trade him for any other child. I am so, so glad that I trusted my gut and had him referred at 18 months. The day of his diagnosis was in some ways sad but we also raised our glasses to having done all we could for him as his parents by getting support in place early.

To the person upthread who said they’d be surprised if he was autistic, all I can say is when you’ve met one autistic child you’ve met one autistic child. Mine still cuddles, smiles back at me, kisses me, takes turns with me, plays games with me, and responds to his name. He is also very much autistic!

Your messages were all really helpful at a difficult time in my parenting journey, so thank you one and all!

OP posts:
Goodwitchglenda · 03/01/2026 14:57

Worriedmotheroftwo · 25/07/2024 22:50

My son is autistic. It was obvious to me well before he was 1, though everyone dismissed me. He finally got his diagnosis at 5 (this year).

He is a delight. He is in a mainstream school, is working at expected levels in everything (except social emotional stuff) and is brilliant at maths. He has friends and hobbies. He has just finished Reception and loves school.

So honestly, you just can't tell. Best of luck to you and your child.

I’m so glad that he is doing well and happy!! Did he have a speech delay? Our consultant says it’s still very early days for speech although to me it feels very late of course.

OP posts:
Worriedmotheroftwo · 03/01/2026 20:55

Goodwitchglenda · 03/01/2026 14:57

I’m so glad that he is doing well and happy!! Did he have a speech delay? Our consultant says it’s still very early days for speech although to me it feels very late of course.

Yes he did have a speech delay. He was in a waiting list for SALT (advised by NHS) but by the time he finally got to the top of the list he was speaking so they never gave him SALT. In hindsight I should have pushed for it! He was less delayed with speech than your son. He has SALT and OT sessions these days (after a long battle I got him an EHCP). He's achieving amazingly well - exceeding expectations in almost everything. He's in Year 2 now and is a happy chap. He loves school, he has friends, and he does clubs. I realise now I'm probably autistic as well and that gives me hope for him! Hope your son is doing well.

Goodwitchglenda · 04/01/2026 15:41

Worriedmotheroftwo · 03/01/2026 20:55

Yes he did have a speech delay. He was in a waiting list for SALT (advised by NHS) but by the time he finally got to the top of the list he was speaking so they never gave him SALT. In hindsight I should have pushed for it! He was less delayed with speech than your son. He has SALT and OT sessions these days (after a long battle I got him an EHCP). He's achieving amazingly well - exceeding expectations in almost everything. He's in Year 2 now and is a happy chap. He loves school, he has friends, and he does clubs. I realise now I'm probably autistic as well and that gives me hope for him! Hope your son is doing well.

That’s great. How old was he when he started speaking and was he a gestalt language processor? Would you say his autism is “mild”? Just curious to hear others’ experiences.

I know people don’t say mild or severe anymore, but it feels like a huge umbrella term at the moment, maybe one that is too huge because of all it is trying to contain. We get high rate DLA so it’s obviously judged as fairly severe.

My son doesn’t have scripts or echolalia at all really, which makes him very different to my sibling. He has started responding yes and no to questions sometimes which is interesting as he is doing it appropriately. I hope he speaks more eventually but at the moment that seems unlikely.

OP posts:
Worriedmotheroftwo · 04/01/2026 16:51

I'm afraid I can't remember when he did start speaking. I know nursery and a Health Visitor raised concerns. I feel like maybe he got to the top of the waiting list during covid, which would have made him 2 to 3 years old? He was talking by then. I had to look up what a gestalt language processor is, but no, he wasn't.

I'm fine with using terms like mild etc, and I agree with you. He does get high rate DLA, but I would actually say his autism is fairly 'mild'. As in, most other parents we hang out with don't realise he is autistic unless we tell them (they view him as a little quirky, or a character I think). He has ADHD as well, and can be quite exuberant, which I actually thinks masks his autism a bit. He will likely struggle with life more as he gets older but he is currently a happy little guy.

Great to hear your little one is responding to questions. I'm afraid I don't have enough experiece in speech delays to reassure you, as although my son was delayed it wasn't severely long.

Goodwitchglenda · 04/01/2026 18:48

Worriedmotheroftwo · 04/01/2026 16:51

I'm afraid I can't remember when he did start speaking. I know nursery and a Health Visitor raised concerns. I feel like maybe he got to the top of the waiting list during covid, which would have made him 2 to 3 years old? He was talking by then. I had to look up what a gestalt language processor is, but no, he wasn't.

I'm fine with using terms like mild etc, and I agree with you. He does get high rate DLA, but I would actually say his autism is fairly 'mild'. As in, most other parents we hang out with don't realise he is autistic unless we tell them (they view him as a little quirky, or a character I think). He has ADHD as well, and can be quite exuberant, which I actually thinks masks his autism a bit. He will likely struggle with life more as he gets older but he is currently a happy little guy.

Great to hear your little one is responding to questions. I'm afraid I don't have enough experiece in speech delays to reassure you, as although my son was delayed it wasn't severely long.

Thanks for answering my questions! It sounds like your boy is making great progress 🙂

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