To ask about the severity of my DS's possible ASD

[EveryAction]

Hi everyone, I have a lovely DS who is 2y10m and speech and language delayed and possibly ASD. I know none of you can tell me if it would be mild or severe, but I'm going to ask for your opinions anyway and maybe some of you could share your own experiences with me. So, DS ..

• Points to request things, starting at 2y7m
• Understands and follows instructions from his daily routine, shoes on/let's go/meal time/bedtime/etc etc
• Does babble and has recently started saying a few simple words in context, for ex, "shoes", "uh oh", "here" (when handing me something). He doesn't use his words too often yet, but I'm over the moon that he has started :-)
• Great fine and gross motor skills
• Great sleeper
• Great attachment to me
• Pretend feeds me with his toys, dances with me when I play the guitar, walks like a crab and hysterically laughs when I say "I'm a pinchy crab" (don't ask) 😂. Plays peekaboo etc with his sis and loves bouncing about on the trampoline with her
• imitates scenes/actions off Peppa pig all the time, he's got a great eye for detail actually!
• Loves toys and playing with them
• Feeds himself for the most part and can drink out of an open cup no problem etc
• Will now walk holding my hand instead of running off all the time

I've saved the not so positive stuff til last as I hate talking negatively about my gorgeous boy. But here goes ..

• Obviously the speech and language delay
• Sensory issues with having his nappy changed and wearing certain clothes, hates wearing a coat etc
• Ignores all other children apart from his sister and prefers to play alone
• Mostly ignores strangers when they talk to him
• Appears in his own world although does interact with us at home
• Sometimes looks at things from the corners of his eyes and sometimes spins

That's all I can think of right now, thanks for reading everyone and hope you've all had a great weekend ..

You really can't tell - and it will partly depend on the environment around him anyway, since autism tends to be rated on how it affects other people, not the person themselves.

When you have a more “high functioning” ASD child, they are aware of their difficulties such a finding it hard to make friends. Or feeling out of place. However they don’t seem to know how to resolve it, so it’s an internal battle that kind of rages! They may want friends, but have no clue how to go about it and it can cause such anxiety.

My younger is so in his own world he doesn’t care at all! So having a high functioning ASD child doesn’t mean it’s going to be easier to navigate. In fact it can be quite the opposite.

Thanks again everyone .. I should probably mention that our family is quite neurodiverse! I myself am diagnosed with innatentive ADHD. My brother has high functioning autism .. He wasn't diagnosed until he was a lot older but he didn't talk properly until age 5, many obsessions and his voice has a different tone to it but he's doing amazingly now. I love my brother so much! His son is also diagnosed with HFA and my other nephew is ADHD with autistic traits, in a specialised sort of school but also doing brilliantly and going on to become a carpenter now. My other two nephews didn't talk until 3 but do seem neurotypical now :-)

OP i mean this nicely, but as an autistic person it is hard to read you categorising your son's behaviours as good and bad. It seems like you're listing all the neurotypical traits as positive and the neurodivergent ones as negative. It makes me sad and uncomfortable to read that you think a little boy spinning (behaviour to self regulate himself or provide pleasant sensory stimulation) is a negative thing. I and most other autistic people spend large parts of our lives masking our authentic behaviours that can help us cope with life, because we've been brought up to believe they are weird and embarrassing. Please don't go down this route with your lovely son.

@EveryAction

Thanks again everyone .. I should probably mention that our family is quite neurodiverse! I myself am diagnosed with innatentive ADHD. My brother has high functioning autism .. He wasn't diagnosed until he was a lot older but he didn't talk properly until age 5, many obsessions and his voice has a different tone to it but he's doing amazingly now. I love my brother so much! His son is also diagnosed with HFA and my other nephew is ADHD with autistic traits, in a specialised sort of school but also doing brilliantly and going on to become a carpenter now. My other two nephews didn't talk until 3 but do seem neurotypical now :-)

I’d take great heart in your family’s experience of neurodiversity.

Obviously none of us can predict the future, but for me I’ve found huge amounts of reassurance in knowing other children, and people who are now adults, that have thrived with the supports that a diagnosis can bring.

@TheNarwhalBalloon

OP i mean this nicely, but as an autistic person it is hard to read you categorising your son's behaviours as good and bad. It seems like you're listing all the neurotypical traits as positive and the neurodivergent ones as negative. It makes me sad and uncomfortable to read that you think a little boy spinning (behaviour to self regulate himself or provide pleasant sensory stimulation) is a negative thing. I and most other autistic people spend large parts of our lives masking our authentic behaviours that can help us cope with life, because we've been brought up to believe they are weird and embarrassing. Please don't go down this route with your lovely son.

True ! I can see what you mean there. Sorry that I caused offence .. I'm really not bothered about his autistic traits, just hoping he comes along in his development which I'm sure he will :-)

I think the OP maybe doesn’t mean it her post to come off like quite like that- she probably didn’t intend it. From her previous post I think she has a positive view of people who are neuro divergent.

But I appreciate your post. I often need reminding that my sons traits are there as a copying mechanism and he’s not trying to be difficult on purpose xxx

Gosh that didn’t make any sense. So many typos!

“Coping” not copying!

@Missrabbitt that’s a bit of a generalisation surely? I know plenty of two year olds with obsessions, it’s a normal part of development. Obsessions with light switches, cars, balls for a bit then onto the next.
I also know lots of kids who used to hand flap when they were excited or agitated at that age and occasionally walked on tiptoes, all fine now.

I’m sure it can be indicative of autism but as I understand it lots of behaviours can be seen as “autistic” behaviours and it’s how they progress as they get older that makes it clearer. I’m always surprised when experts say they can spot it in children early when it takes so long to be professionally diagnosed.

By your list my DS would tick three of those behaviours from things he’s done today but we (and all health visitors etc) have no concerns

• I’m just curious as a lot of what you’ve said sounds like normal behaviour for a toddler aside from speech delay.

OP your little boy sounds lovely and I would be reassured by the fact he’s very engaged with you and his toys, however as you and so many posters have said nobody can tell you really, it’s very hard to know how it will progress or whether it will even be anything outside of NT behaviour.

I think it's a real red herring to go down the mild/moderate/severe route and it can actually do you and your child a disservice. My DS has what would probably be described as 'mild' ASD, he may even have been diagnosed with Asperger's but they stopped using that specific label. His pead said to me 'I am so glad they have stopped using that because people view it as autism-lite and that is incredibly difficult and damaging to people who struggle to fit into this world as much as any other neurodivergent person does, but because they have reasonable language and reasonable masking, no-one sees the struggle. They're then judged against a neuro-typical scorecard that they can't possibly make top marks on, and they're set up to fail. I cheered and cried the day they dropped that type of diagnosis.'

You sound lovely, I'm not criticising that you asked the question, just wanted to give you another viewpoint which is that it actually isn't that helpful a question to ask.

OP, with the absolute best intentions, it's not realistic to say X is autistic and doing brilliantly now. They are still autistic. I have past my 'doing brilliantly' stage. I'm in my 40s and in the middle of an absolute burnout which started about 3 years ago as the result of 'doing brilliantly'

It like my pp, where a person is now, in all aspects of their life, will change. I worked a customer facing role for 30 years - I now have non verbal episodes. Maybe next year I will go back to work, who knows. What you need to focus on is what your son needs now, how to help him get through the day. 'Uncle doing brilliantly' is an expectation that neither of you need and said uncle is prob let struggling internally to do brilliantly.

Honestly op, there is nothing in your 'negative' behaviours that couldn't be evident in a NT child He sounds like a wee love and I'm sure you'll nurture him beautifully regardless of any possible diagnosis in the future

@DietrichandDiMaggio

It will probably be mild. For Moderate I wouldn’t expect more sensory issues, no imitation, and absence seizures. For severe I would expect close to zero social interaction / communication.

What are your professional credential for such a sweeping statement?

20+ years childcare experience for kids in this age group. Basically at 2 I would only really expect severe asd to be diagnosed in the UK. Even moderate has to be on the severe side. The parent of a 2 yo that is communicating, imitating, talking would probably unfortunately be fobbed off by a mild diagnosis if lucky or, more likely, be told it’s too early to tell.

This is why it’s so important to keep a diary.

Thanks everyone. Some really interesting views here which have made me think! :-) But I will say, uncle really is doing brilliantly and I will focus on that and tell it to anyone because my brother has to overcome more challenges than most and why not focus on the positives in life. :-) As humans we all have our struggles, and humans with autism, more so for sure .. But deep down I think my son will do great, and I'm surrounded by neurodiverse people who confirm that for me everyday .. :-) and he has me! I'm probably a bit of a Pollyana but I quite like being one!

No one can say and all honesty no professional likes to say low/ mild/ high now either.

Talking is great though. Try as much as possible to work on communicating with him, turn taking games and making him communicate to get his turn.

ASD isnt always about the severity of the tirades but more about the impact they have on your life. You could be the worlds biggest stimmer, but if it doesnt impact massively on your life, you wont be so far along or into the spectrum.

@EveryAction - with a Mummy like you, he will do so well, no matter what.

you wont be so far along or into the spectrum.

That's not what 'spectrum' means. It's not a sliding scale. There is no along or into.

A lot of what you describe is very similar to my son just diagnosed with moderate asd. I think a lot of people are very surprised with how autism presents in different people. For instance my son makes eye contact, points, engages in imaginative play has excellent gross motor skills, has interest in other children, very attached to both his parents, plays with a wide range of toys, excellent sleeper, not a flight risk, follows instructions, good appetite and diet. However he is non verbal, has sensory issues around clothes and noise, very rigid around routines, prone to meltdowns, hates change, becomes overwhelmed easily. Try not to focus too much on the diagnosis itself as and just use it to get the extra support that you need. My little boy is making huge progress quickly and definitely calmer and coping much better overall ♥️

@glittereyelash

A lot of what you describe is very similar to my son just diagnosed with moderate asd. I think a lot of people are very surprised with how autism presents in different people. For instance my son makes eye contact, points, engages in imaginative play has excellent gross motor skills, has interest in other children, very attached to both his parents, plays with a wide range of toys, excellent sleeper, not a flight risk, follows instructions, good appetite and diet. However he is non verbal, has sensory issues around clothes and noise, very rigid around routines, prone to meltdowns, hates change, becomes overwhelmed easily. Try not to focus too much on the diagnosis itself as and just use it to get the extra support that you need. My little boy is making huge progress quickly and definitely calmer and coping much better overall ♥️

Glad your little one is doing so well! :-) Are you in the UK? Only asking as I've heard they don't tell you what level your child is here as they can change so much in the early years? I could be wrong though!

You need to read up on the “spiky profile” theory. Nancy Doyle does good word on this; it’s essentially the theory that people with autism do
not have linear capabilities but more strengths in some areas then massive gaps in others- if you drew a graph it would be “spiky”.

I am 29 but at 2 would only talk to my mother, inside the home, lots of handflapping and tiptoeing, though clearly bright.

At 29 I’m a project manager in a demanding industry with a degree, earning good money, own my own home and getting married next year. I am selectively mute when stressed, sometimes socially awkward/outspoken, have various sensory issues and sometimes just crash with the effort it takes to keep up in a NT world and my fiance needs to care for me as I can’t even dress myself. I have a few reasonable adjustments in work but generally manage my condition myself.

Overall I live a happy life and also indulge my special interests of live music and photography. I would not change being autistic for the world; it has actually opened several doors for me previously.

[quote Shimmylikejoanholloway]@Missrabbitt that’s a bit of a generalisation surely? I know plenty of two year olds with obsessions, it’s a normal part of development. Obsessions with light switches, cars, balls for a bit then onto the next.
I also know lots of kids who used to hand flap when they were excited or agitated at that age and occasionally walked on tiptoes, all fine now.

I’m sure it can be indicative of autism but as I understand it lots of behaviours can be seen as “autistic” behaviours and it’s how they progress as they get older that makes it clearer. I’m always surprised when experts say they can spot it in children early when it takes so long to be professionally diagnosed.

By your list my DS would tick three of those behaviours from things he’s done today but we (and all health visitors etc) have no concerns

• I’m just curious as a lot of what you’ve said sounds like normal behaviour for a toddler aside from speech delay.

OP your little boy sounds lovely and I would be reassured by the fact he’s very engaged with you and his toys, however as you and so many posters have said nobody can tell you really, it’s very hard to know how it will progress or whether it will even be anything outside of NT behaviour.[/quote]
Yes I’m generalising and i hope it hasn’t come across that I think one of those behaviours means an ASD diagnosis- just that a few together can be an indicatior.

Also by obsession I don’t mean that they are really into something for a while and then move on. A friend’s little boy has been into rockets since he was 2 and is now 8. At 3/4 years old he would just sit and watch rocket launches on the TV and relay back every tiny detail - but then didn’t have any clue who I was.

Hard to say but my dd2 was like your son and nothing wrong with her (adult) Dd1 is autistic and had no speech at that age, terrible sleep, wouldn't eat etc

Oh and seizures

@EveryAction no I'm in Ireland. It depends who does the diagnosis I think. Best of luck with it ♥️