If autism is obvious at 2, is it severe?

[Goodwitchglenda]

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

how far in to being 2?

i can’t fathom that on the basis of what you describe a medical professional said a diagnosis was “likely”

Are you…. sure?

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 abou

i would be very very surprised if this child is has ASD

I have two autistic siblings, one very severe, so her benchmark is quite extreme).

i think this is making you see shadows where there are none

I wouldn't start thinking about severity yet. Unlike the previous responses, I do think its good that you're seeking an assessment, but you don't even have a diagnosis, so worrying about severity isn't going to get you anywhere. And a lot can change over time in both directions. I saw a young autistic person give a presentation to an audience this week, and they said they didn't speak until 3 - now thriving in mainstream high school with support. Concentrate on meeting your son's needs now. Do you have a speech therapy referral?

My DD showed all these signs but at aged 4 or 5 things started to change. We clocked on at 7 and she was diagnosed at 9. All this is to say, perhaps try no tot catastrophise and concentrate on enjoying hanging out with your lovely DD! She sounds wonderful. You can't see what's round the corner and it sounds like it's too early to tell what her experience will be in the future - with or with out ASC.

2 years 3 months.
Yes am almost certain, and I know what to look for. Not pointing alone seems like a massive one, but now the stimming and running up and down make it seem obvious. Child is engaged with us but seems markedly different to peers, to me anyway. Does mostly ignore medical professionals/strangers, which doesn’t help.

My partner is neurotypical and didn’t say a word until 3, but it’s the other signs plus the speech delay.

Can I ask, when did they point/talk? How come you didn’t suspect ASD?

Thank you, I’m trying, but my experience of severe autism is making it very difficult. I know how challenging this journey could be. I hope your daughter is happy and well

because i didn’t have two siblings with autism

and just accepted he was…. 2 years old

and as long as he seemed happy, i was happy

2 years 3 months

so so young op

and if you’re being honest

no medical professional has said your 2.3 year old who still laugh, engages, enjoys cuddle and playing… “likely” as ASD

They have. They said we were almost certainly looking at a diagnosis when our assessment comes up.

This is the third professional who has been concerned, as well as nursery who have put extra support in place and receive extra SEN funding for child.

DS’s presentation now may not always be how he presents as he grows up. No-one can say if DS will be independent or verbal. That’s really hard when all you want is answers, I know.

Also, ASD isn’t on a scale from mild to severe. That isn’t what the spectrum is. A child who is verbal may still have significant support needs. A child who is not verbal may go on the be independent. A child who has low support needs may go on to be a teen/adult with high support needs.

It is brilliant you are on the waiting list for an assessment and have met supportive HCPs. None of what you have written rules out autism. Some autistic DC laugh, play, engage, enjoy (or even seek out) cuddles, smile, shows eye contact.

how nursery applied and received SEN inclusion funding for your son?

I think that’s what it is, yes. It’s not much, it’s just for a bit of extra support, he isn’t diagnosed with anything and didn’t need to be

My DS sounded almost word for word like yours at 2yo, and he is now 5.5yo and does have a diagnosis of ASD. I was in the same boat as you, seeing the red flags but also the things like eye contact and cuddles that "surely" meant he wasn't autistic but he is indeed!

In equal measure, your DC is only 2 and a lot can change month by month, so don't in any way consider this as a diagnosis! It's good you are trusting your gut instinct though, despite people telling you otherwise (EVERYONE told me to calm down and stop imagining things - his nursery, HV, family, etc). Learning about autism now, in case you are correct, isn't a bad thing.

For what it's worth, our DS does speak (though still has a significant speech delay), attends mainstream (though struggles), and is getting additional support for things like speech and sensory integration. He's only 5, and although he does need help on these things it's also clear how intelligent he is - he's learning phonics at a similar pace to his peers, has a startlingly good memory, really cheeky sense of humour, and surprised me lately with how much his awareness and understanding of other people's emotions has come on in the last few months. It's a lot of work to help him in the areas where he needs it, but it's also so worth it because I'm optimistic about what the future holds for him.

Because autism is a difference in neurotype, its really really difficult to declare how "severe" or not their symptoms will be when they're older (agree it's not a simple sliding scale of mild to severe, but I understand why you're asking). Each individual develops differently based on their unique nature/nurture, genetic/environmental factors. Rather than worrying about what may or may not be set in place due to genetics, I would look at what you can do now in terms of early intervention to help steer that trajectory because, luckily, you are thinking about this early. There's a lot that parents can do at home to help support DC to develop joint attention, communication and language skills at such a young age, which can make a real difference to future outcomes.

Thank you. This is a nice message. We are doing private speech therapy. There is no NHS offer for speech therapy for any autistic child in our borough, it’s a scandal.

Nursery has a language group which he is a part of, and they have set targets for him. The SENCO says she believes that he will speak. He is obviously behind but not in the way my sibling was. He washes his hands, brushes his teeth, lies down for his nap, climbs up to get his nappy changed when instructed etc.

A child psychologist spent an hour with us and said what I’m doing is as good as any speech therapy. She called it intensive interaction which I guess it is. I was just doing it instinctively because of my siblings but I’m going to read up on it.

Thanks for this message. Well done to you and your DS for making such amazing progress. He sounds like a lovely, cheeky little lad.

I’m not really holding on to the eye contact/turn taking/cuddles as a sign he isn’t autistic. More a sign that there is a communication bedrock/desire to engage that might bode well for better social communication in the future. My sibling was very much locked in his own world which is what I mean when I say severe. The sort of classic autism that was the only kind that was really diagnosed back in the 1990s. Times have changed and the spectrum has widened massively. At the same time, it is hard for me not to go into a dark place of worst case scenarios.

When did your DS start talking? Did he follow a classic language pyramid of development or was he more of a gestalt processor? Did he ever point?

I’m going to buy a few books to complement the intensive interaction stuff that I’ve been doing (that I mention above). We are also doing private speech therapy and nursery are doing a language group with the speech delayed kids. There’s also a class we go to and child is participating in group activities there.

If there are any other resources out there that you think might help, please do let me know

That's so great - well done! Yes, in our area, the speech therapy support from the NHS is really just recommended reading for parents/teachers as well, not providing actual speech therapy sessions. So it's good to just cut to the chase and get on with things, rather than wait for support that's never going to arrive!

When our son was 2.5 we did something quite similar (though you may be working with more up to date info) and it did get us to the point of him enthusiastically using language, but it was mainly delayed echolalia. Once we realised that, we started following approaches for Gestalt Language Processors (there's tons on social media about this that can lead you to more robust info). If you find when your DS starts speaking that he can recite whole pages or even whole books, but doesn't construct his own simple sentences, this might be relevant for you.

Good for you following your instincts. If you're wrong, at worst, you may be doing some extra parenting, but it's not going to hurt anything. But if you're right, then you'll have acted early and put in place some early intervention that will have long term benefits, which you'll never regret. My only regret is not trusting my instincts sooner.

Has an EHCNA been requested? If an EHCP is issued, SALT in excess of what is typically available can be included in there without you having to pay for it.

It hasn’t, and it hasn’t been mentioned to me, I guess because he is still so little. I will look into it, though, thank you. I’m sure there are a few people who could provide supporting evidence

You can request an EHCNA yourself. IPSEA and SOSSEN are charities who support parents of DC with with SEN. They both have lots of helpful information on their websites, including model letters you can use to request an EHCNA.

Sorry, I didn't respond to some of your questions.

• DS didn't point until we manually taught him, at around 2.5yo
• He started using functional single words around that time (mainly "biscuit" haha)
• By around 3yo he was reciting whole sections of the Gruffalo and before 3.5yo he was using scripts from Julia Donaldson books to communicate in a classic GLP way - i.e. he would say "I am Stickman" to tell us he was upset, because there was a scene in the movie where the character is upset and he attached that emotion to the phrase
• At some point between 4-5yo he started breaking down those scripts and now at 5.5yo he uses a mix of original, functional language, and scripts which I think he mainly uses as stims

At 2.5 we used the book A Better Start for your Child with Autism - it outlines the Early Start Denver Model approach to building communication and shared attention/interests. Newer books and approaches may be even better, but I think the underlying principle of building connection and communication through your child's interests and preferred activities is the foundation for all these approaches.

Now that his speech has progressed, and his sensory differences are easier to see and try to understand, we use:

• the Meaningful Speech resources for GLPs
• sensory activities recommended in the Out of Sync books (though we're still trying to wrap our head around this)

We're still very early in the journey too, but I guess it's just important to say that you should absolutely have hope and be optimistic. And that you can play a really important role in shaping your DC's future, that it's not all set in stone because of a potential diagnosis. But it sounds like you're already on board with this idea and getting stuck in! Honestly, well done and just keep learning and supporting your DC xx