2 year old DD autistic - what does the future hold?

[SpeechieE]

Hi everyone... so I know no-one has a crystal ball and can tell me what is going to happen, but I'd love to hear your experiences.

So my daughter will be 2 and a half in early January, and the paediatrician does think that she has lots of strong autistic traits, and we're on the pathway to assessment. We have been referred to SLT for her delayed understanding, and while she does speak a lot, she uses lots of repeated phrases and stereotyped language (echolalia). She's absolutely wonderful, and so bright - she can already read numbers and the alphabet, and is very interactive, just on her own terms, but the main challenge we have is that she doesn't understand what we're saying when we speak to her. There's no way we can have a two-way conversation with her.

There are quite a few other things going on, but I'd love to hear your experiences re: language. I was just wondering if any of your little ones used lots of echolalia and repeated phrases, and had no reciprocal language...did this develop? Can you have a conversation now?

The future feels so alien and strange.... the run up to Christmas is so weird for me, as my DD is not at all bothered about any of the stuff I imagined we'd do, and while that's fine, it does sometimes make me sad. I put the christmas tree up yesterday, and tried to get her involved in putting decorations on, but she was much more interested in reading her Hey Duggee book! Hey ho...maybe next year? Although I remember thinking that last year, so maybe not!

Thanks everyone.

I don’t have any advice. Just wanted to say that I’m in a near identical boat.

Realising that my DD’s speech was almost entirely learned and echolaic at 2.6y was actually the thing that prompted me to go to the GP with concerns about autism - she had lots of other signs too, but until that point I hadn’t realised they all formed part of a bigger picture. At your daughter’s age my DD was also very interested in the alphabet and numbers, and spent a lot of time with books. Her speech was plentiful, with amazing vocab, but not remotely ‘conversational’ and I think she didn’t really understand many of the long words she was using.

She is now 11.5 yrs and her language and communication has improved and expanded massively. She is able to express herself, her thinking and her feelings articulately and in a considered way, and to engage in conversations, but significant difficulties around communication remain, they are just different from when she was 2. So she can get very fixated on her special interest subjects and want to talk repeatedly at you about these, including to people who may show signs that they have lost interest, which she fails to pick up on. She has trouble with knowing how to speak ‘appropriately’ in particular situations - might speak to an unfamiliar adult very casually (perceived as rude), or overshare, or not realise when to stop in certain situations. She often wants to revert to ‘safe’ (ie. often repeated) subjects/conversational structures when she needs reassurance, or when she wants to initiate conversation but is not sure how, and at times wants me to speak for her. But all that said, we have really seen her own conversation and communication emerge over the last year, and the joy of it is, that it is very often extremely quick and witty, and bang on it (which amazes us, as often we had/have worried about a lack of understanding underpinning lots of of her communication issues). Her vocab is still very advanced except now she really is using words she understands and in the correct way. She can be hilarious, and is shaping up to be amazing company - which is so exciting as for years much of the time, communicating with her meant listening to endless reruns of the same conversations or being asked to tell the same stories. So all in all, don’t despair, and celebrate every communication gain! Xx

It's so hard when they are little and you want the crystal ball so badly. I find now DD is 7 I worry about the future far less. DD did have a lot of stereotyped language and took a long time to respond to her name (still does to be fair - though possibly some of it is now strategic ). She may still do: I never really noticed at the time, it seemed normal to me (but I've since realised I'm probably autistic myself so not the best judge of what is "typical" - she is a bit of a mini-me).

I just wanted to hop on to recommend the Nurturing Neurodiversity Facebook group and YouTube channel. Her son Dexter is largely non-verbal and super-smart - very into language and numbers like your DD. He's interacting much more as he gets older and Faye talks about things that she thought he was totally disinterested in that he then mentions on his AAC device ages later and it turns out he was taking it all in.

Search on Facebook for any local autism or special needs parents groups, see if the NAS has a group local to you, etc. Other local parents and adult autistics (which obviously are quite heavily overlapping groups!) will likely be your two most important sources of information and support. I remember pre-Dx I was reluctant to join groups or seek out local parents but I wish I had done. I've learned so much from these groups. Nobody is interested in gatekeeping in my experience, and I could have joined earlier when I actually needed the support and information more.

@LightTripper and @LemonGoby Thank you so much for your responses, I really appreciate them. And @Appleseesaw I also really feel for you and I hope these responses have given you some hope as they have me!

Thank you so much both, it sounds like both of your lovely little ones have done brilliantly! I understand it must be tricky sometimes when they still struggle with aspects of communication, but it is just so lovely to hear how far they have come. I have some dark days where it feels like how my DD is now is how it will be forever, as it's such slow progress. But progress is progress!

My DD is coming on more and more every day. She uses a lot of echolalia, but it is so adorable sometimes, I think I would miss it if she didn't do it! For example, when she falls over or hurts herself she'll say "Oh darling, oh sweetheart, what happened?!" exactly in my tone and intonation It absolutely melts my heart! And she's so full of personality, it's fab. I just hope one day we can have a conversation. But for now, I'll happily listen to her chatting away in her quirky little way.

Thanks everyone for your replies x

She sounds adorable! Having any language is a very good sign, and she clearly wants to communicate - it's just about finding ways to make it more effective.

We did a lot of modelling when DD was little and used to say e.g. "Do you want a drink?" when she wanted a drink. To be honest we were very happy with that because previously she wouldn't ask for things at all - but we did model for her by saying "Can I have a drink?" and she picked it all up fairly quickly.

Useful link on how to build on echolalic communication here:
www.hanen.org/Helpful-Info/Articles/Helping-Children-Who-Use-Echolalia.aspx

She sounds great! My boy did use language at that age (though there were subtle understanding issues) so I didn't really know anything was up, but in hindsight he did use a lot of echolalia and would recite whole books. Like your DD he was bright and very interested in letters/numbers/books. After learning all his books by heart, he would run through them while reciting them and thus taught himself to read.

If your DD becomes an early reader it is a great skill to have (also very cute). I once read about a technique you can use (for hyperlexic kids) to support language development. For example, if you want to teach the kid to ask for a drink, then you use a card with 'drink, please' or whatever, the child reads it, and then you get the drink. My son (at 11) still prefers to grunt at me and expect me to magically know what he wants! As for 'please' and 'thank you', he considers them to be a waste of words!

It is so tough when they are little and you don't know what the future holds. As you know, it is impossible to predict, but I would say that it may be challenging in ways you had not expected, but potentially more rewarding as well. It is great that DD is on the pathway to assessment and also that she sounds quite capable in many ways. I remember being really frustrated with mine when I took him to baby gym and he just wanted to read the letters on the side of the gym equipment, but if I could turn the clock back, I would spend more time joining him in his interests. I was worried that I would lose him to his world of words/Julia Donaldson/Octonauts (which has not been the case) but I didn't recognise that this was his safe place and his rigidness was his way of trying to impose order on a confusing world.

Hi my son has autism and PDA and your child sounds very much how my son was. He used ALOT of echolalia and always repeated phrases or sentences over and over. He is 11 now and still does this sometimes especially to express how he's feeling. But his speech came on brilliantly over time from about the age of 7. I use to feel things would never change as the progress feels so slow but he got there and your child will too. My son was great at reading very young too, and very bright so they sound similar 😊 it's only in the past two years that he even cares about Xmas and Santa before that he couldn't care less 😂❤️❤️❤️ always here if you need chat as I also know how hard day's can be with a child on the spectrum ..lots of love ❤️

She sounds a lot like my little boy at a similar age.

If you'll allow me to offer advice, if she gets a diagnosis of ASD then apply for DLA and use the cash to pay for weekly or fortnightly therapies to help bring her on. My DS was under our local NHS SALT and only got 1 appointment every 3 months which was nowhere near enough. We paid for 3 years of weekly SALT with DLA which made a big difference. DS's speech is still definitely very autistic - tons of echolalia. But he has enough spoken language that he can get by in mainstream primary school and we can have a conversation (his listening and social skills not so great, so that brings difference challenges. But he's verbal and his range of speech improves every year.)

Another thing that helped was putting the subtitles on his favourite programmes. He's a sight-reader. Doesn't get phonics at all but has managed to develop good reading skills just from recognising words from subtitles. Many autistic people have an excellent visual memory. In my son's case it has helped compensate for some comprehension difficulties he has elsewhere.

In terms of Christmas - my DS only really started getting into it at around age 5/6. Start with little things and draw her in gradually over a few years. For my son it was the advent calendar that first really sparked excitement. The lure of the chocolate coins inside! He quite enjoys Christmas now provided it's not too noisy.